Advocacy I: Seize the Power! March 17-19, 1999 Salt Lake City, Utah Sponsored by the Independent Living Network Contributors to the TRAINING MANUAL: Julie Ballinger June Isaccson Kailes Dan Mayclin Jim Glozier Gloria Nieto Roberta Sick Kevin Irvine Linda Anthony Kathleen Kleinmann Woody Osburn Barbara Toomer Richard Petty Laurel Richards Carri George 1999 ILRU Program 2323 S. Shepherd, Suite 1000 Houston, TX 77019 713-520-0232 (V) 713-520-5136 (TTY) 713-520-5785 (fax) Substantial support for development of this publication was provided by the Rehabilitation Services Administration, U.S. Department of Education. The content is the responsibility of ILRU and no official endorsement of the Department of Education should be inferred. Permission is granted for duplication of any portion of this manual, providing that the following credit is given to the project: Developed as part of the IL NET: ILRU/NCIL National Training and Technical Assistance Project. TABLE OF CONTENTS SECTION I: IL Network Information Trainers and IL NET Staff About the IL NET About ILRU About NCIL TRAINERS AND IL NET STAFF TRAINERS Julie Ballinger IL NET Consultant 9416 Freedom Way Alburquerque, NM 87109 (505) 797-8612 (v) julieb4@flash.net June Kailes Disability Policy Consultant 6201 Ocean Front Walk, Suite 2 Playa del Rey, CA 90293-7556 (310) 821-7080 (v); 827-7470 (fax) jik@pacbell.net; http://www.jik.com Dan Mayclin, Ph.D. Consultant & Trainer 101 Moss Lane Santa Cruz, CA 95060 (831) 469-3621 (v) dmayclin@inreach.com Jim Glozier Advocacy and Training Director Tri-County Patriots for Independent Living 69 East Beau Street Washington, PA 15301 (724) 223-5115 (v); 228-4028 (TTY) 223-5119 (fax) jim@tripil.com Gloria Nieto, Executive Director People of Color AIDS Foundation of NM P.O. Box 5720 Santa Fe, New Mexico 87502 (505) 820-0622 (v); 8200-636 (fax) globall@newmexico.com Roberta Sick 2519 Durwood Road Little Rock, AR 72207 (501) 663-5895 (v); 568-9504 (Fax) cimarronrs@aol.com Kevin Irvine Disability Advocate Equip for Equality, Inc. 11 E. Adams St. Suite 1200 Chicago, IL 60603 (312) 341-0022 (v/TTY); 341-0295 (fax) dirvine@compuserve.com Linda Anthony, Executive Director PA Coalition of Citizen with Disabilities 101 South 2nd Street, Suite #4 Harrisburg, PA 17101 (717) 238-0172 (v); 238-3433 (TTY) 238-8663 (fax) jbpccd@aol.com Kathleen Kleinmann 69 East Beau Street Washington, PA 15301 (724) 223-5115 (v); 228-4028 (TTY) 223-5119 (fax) kleinman@tripil.TRIPIL.com Woody Osburn, Executive Director Ohio SILC 380 South Fifth Street, Suite B8 Columbus, OH 43215 (800) 566-7788 (v); (614) 463-1244 (TTY) (614) 463-1246 (fax) silc@netwalk.com Barbara Toomer Secretary/Treasurer Disabled Rights Action Committee 3565 South West Temple Salt Lake City, UT 84115 (801) 484-9314 (V/TTY) 484-9315 fax drachq1@ibm.com IL NET STAFF ILRU Lex Frieden Laurie Gerken Redd Executive Director Administrative Coordinator lfrieden@ilru.org lredd@ilru.org Richard Petty Bob Michaels Program Director Training and Curriculum repetty@compuserve.com 65 E. Kelly Lane Tempe, AZ 85284 Laurel Richards (602) 961-0553 (v); 961-0533 (fax) Training Director michaels@impulsedata.net lrichards@ilru.org Carri George Dawn Heinsohn Project Associate Materials Production Specialist cgeorge@ilru.org heinsohn@ilru.org ILRU Program 2323 S. Shepherd, Suite 1000 Houston, TX 77019 (713) 520-0232 (v); 520-5136 (TTY); 520-5785 (fax) ilru@ilru.org NCIL Anne-Marie Hughey Raymond Lin Executive Director Logistical Coordinator amhughey@aol.com raymond_lin@msn.comNCIL 1916 Wilson Blvd., #209 Arlington, VA 22201 (703) 525-3406 (v); 525-4153 (TTY); 525-3409 (fax) ncil@tsbbs02.tnet.com Other Staff June Isaacson Kailes Roland Sykes, President Disability Policy Consultant Greater Independence through 6201 Ocean Front Walk, Suite 2 Management Programs, Inc. Playa del Rey, CA 90293-7556 6256 Ramblewood Drive (310) 821-7080 (v) Dayton, OH 45424 (310) 827-7470 (fax) (937) 237-8360 (v) http://www.jik.com rsykes@gimp.com jik@pacbell.net ABOUT THE IL NET This training program is sponsored by the IL Net, a collaborative project of Independent Living Research Utilization (ILRU) of Houston and the National Council on Independent Living (NCIL). The IL NET is a national training and technical assistance project working to strengthen the independent living movement by supporting centers for independent living and state councils on independent living. IL NET activities include workshops, national teleconferences, technical assistance, on-line information, training materials, fact sheets, and other resource materials on operating, managing, and evaluating centers and SILCs. The mission of the IL NET is to assist in building strong and effective CILs and SILCs which are led and staffed by people who practice the independent living philosophy. The IL NET operates with these new objectives: Assist CILs and SILCs in managing effective organizations by providing a continuum of information, training, and technical assistance. Assist CILs and SILCs to become strong community advocates/change agents by providing a continuum of information, training, and technical assistance. Assist CILs and SILCs to develop strong, consumer-responsive services by providing a continuum of information, training, and technical assistance. ABOUT ILRU The Independent Living Research Utilization (ILRU) Program was established in 1977 to serve as a national center for information, training, research, and technical assistance for independent living. In the mid-1980's, it began conducting management training programs for executive directors and middle managers of independent living centers in the U.S. Since 1985, it has operated the ILRU Research and Training Center on Independent Living at TIRR, conducting a comprehensive and coordinated set of research, training, and technical assistance projects focusing on leading issues facing the independent living field. ILRU has developed an extensive set of resource materials on various aspects of independent living, including a comprehensive directory of programs providing independent living services in the U.S. and Canada. ILRU is a program of TIRR, a nationally recognized, free-standing rehabilitation facility for persons with physical disabilities. TIRR is part of TIRR Systems, a not-for-profit corporation dedicated to providing a continuum of services to individuals with disabilities. Since 1959, TIRR has provided patient care, education, and research to promote the integration of people with physical and cognitive disabilities into all aspects of community living. ABOUT NCIL Founded in 1982, the National Council on Independent Living is a membership organization representing independent living centers and individuals with disabilities. NCIL has been instrumental in efforts to standardize requirements for consumer control in management and delivery of services provided through federally-funded independent living centers. Until 1992, NCIL's efforts to foster consumer control and direction in independent living services through changes in federal legislation and regulations were coordinated through an extensive network and involvement of volunteers from independent living centers and other organizations around the country. Since 1992, NCIL has had a national office in Arlington, Virginia, just minutes by subway or car from the major centers of government in Washington, D.C. While NCIL continues to rely on the commitment and dedication of volunteers from around the country, the establishment of a national office with staff and other resources has strengthened its capacity to serve as the voice for independent living in matters of critical importance in eliminating discrimination and unequal treatment based on disability. Today, NCIL is a strong voice for independent living in our nation's capital. With your participation, NCIL can deliver the message of independent living to even more people who are charged with the important responsibility of making laws and creating programs designed to assure equal rights for all. WEDNESDAY MARCH 17 9:00 Welcome! Julie Ballinger, Conference Coordinator 9:30 Keynote Address "Seize the Power!" June Isaacson Kailes, Disability Rights Advocate 10:30 Break 10:45 Understanding The Hold Of Victimization And Oppression. Dan Mayclin, Peer Support Coordinator, Traumatic Brain Injury Project Jim Glozier, Parent Advocate 12:15 LUNCH 1:30 Acknowledging, Assessing, And Redefining Personal Risk. Dan Mayclin and Jim Glozier 3:00 Break 3:15 Gaining Of Awareness Of Different Ethnic Cultural Influences Regarding Disability As It Relates To Self-Advocacy/Power Issues. Gloria Nieto, Director of People of Color AIDS Foundation of New Mexico 5:00 Finished for the Day! For the safety and comfort of those with chemical and environmental sensitivities, please refrain from using any perfumed grooming products such as scented soaps, deodorants, perfumes, and colognes. In addition, it is essential that we maintain a smoke-free environment. THURSDAY MARCH 18 9:00 Changing Defeating Thought Patterns To Positive Self-Esteem And Personal Empowerment. Roberta Sick, Disability Consultant and Trainer 10:45 Break 11:00 Gaining Advocacy Skills To Implement Positive Life Changes And To Solve Personal Advocacy Issues. Kevin Irvine, Disability Rights Advocate Linda Anthony, Director of Pennsylvania Coalition of Citizens With Disabilities 12:15 Lunch 1:30 Gaining Advocacy Skills To Implement Positive Life Changes And To Solve Personal Advocacy Issues Continued. Kevin Irvine and Linda Anthony 3:00 Break 3:15 Knowing How To Seek Peer Support And How To Use That Support To Continue Growth In Personal Power (Disability Culture). Kathleen Kleinmann, Director of Tri-County Patriots of Independent Living Woody Osburn, Director of Ohio Statewide Independent Living Council 5:00 Finished for the Day! FRIDAY MARCH 19 9:00 Knowing How To Seek Peer Support And How To Use That Support To Continue Growth In Personal Power (Disability Culture) Continued. Kathleen Kleinmann and Woody Osburn 10:00 Break 10:15 Gaining Basic Awareness Of Disability Civil Rights. Barbara Toomer, Disability Rights Advocate 12:00 Finished - Thanks for Attending Advocacy I: Seize the Power! "Understanding the Hold of Victimization & Oppression" Advocacy I: Seize the Power Goal of Presentation: Working through victimization and oppression to achieve self-empowerment. Know what Oppression is Understand how & where Oppression happens to people with disabilities Understand the difference between being victimized & being a victim --What is Oppression? --What is Victimization? --Who are Victims? --What are words associated with each of these? --How are you Victimized? --How are consumers Victimized? --The Psychological Aspects of Oppression what does it do to the oppressed & the oppressor? --Experiences of oppression from a personal & a parental perspective. Victim vs. Victimization: Becoming one vs. what Society ascribes to you. --What the ADA [& the media] has wrought in the Attitude Wars. "Acknowledging, Assessing, and Dealing with Personal Risk" Advocacy I: Seize the Power Goal of Presentation: Understanding how having a disability can put one at risk & how to cope with risk. Acknowledging personal risk is the first step in being empowered. -- Looking at your own life: -- In what way are you at personal risk? -- Is there a lack of awareness or denial of risk on your part or the part of the consumer? Assessing personal risk -- Questions to ask: -- Who has the power in the situation? -- What power do you [the consumer] have? -- How can you use it? -- What friends/support do you have? Personal Risk how much do we dare to be advocates for others or ourselves? -- The more you have to lose, the less likely you are to be an advocate. -- For example: -- In an institution, you may see that you have a lot to lose what little freedom you have now, your "privileges" you have acquired, maybe even your life. -- If you live with your family, you may lose freedom, emotional support, & the approval of your family. -- If you live on your own & work, if you advocate, you could lose your job, your abode, your freedom. How does Dependency relate to Personal Risk? Skill Building Exercise -- Listening skills to allow the consumer to lessen their risk "Gaining Awareness of Different Ethnic Cultural Influences Regarding Disability as it Relates to Self-Advocacy/Power Issues" Advocacy I: Seize the Power Goal of Presentation: To gain cultural awareness in relation to others and ourselves. How to relate this awareness and understanding to becoming effective self-advocates. What Do You Mean We're Not All the Same? Learning Objectives: -- To identify the core identities for participants -- To identify other identities that affect a person's perspective. -- Culture is both conscious and unconscious. -- Identify those perspectives and look at the different intersections in life. -- Provide tools for communication for participants to take home. -- Gain a broader understanding of the dynamics of oppression to allow participants to become better advocates. Understanding Cultural Perspectives -- What is our identity? -- Name game - participants engage in a discussion of our names -- Where do we get our identity? -- A discussion of the various factors which comprise our identities. Secondary Identity -- A discussion of the identity factors which can layer on through our culture Culture -- Show me a picture of your grandmother. Dominance Through Culture -- A look at the dominant culture and the relationship of people not in power This Is Real Life -- How Do We Talk To Each Other And Still Be Heard? -- Real life tools for real communication Acquiring Positive Thought Patterns: The Power of Language And Thought Advocacy I: Seize the Power Goal of Presentation: Stop talking to your SELF and start talking to YOU! Learning Objectives -- Look at our words in a new and different way. -- Become more aware of the power of these words and of what we say to others and ourselves. -- Gain a new perspective on what we say to ourselves and then begin to change the messages to influence us so we feel better and accomplish more. Do you talk to yourself? Sure you do. -- What are we really telling ourselves? -- Write down below some of the things you say to yourself ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ The Way We Look At Things Positive Negative Description Of Our Mind -- Conscious Mind -- Subconscious Mind Biological View -- Three Structures of the Brain -- cerebral cortex -- limbic system -- brain stem Characteristics of these Structures -- Tool 1: Shooting The Conversational Hoops -- Hoop 1. You want to say things you agree with. -- Hoop 2. You want to say things that are beneficial and that you are better off believing. -- Hoop 3. You want to say things in a way that the subconscious mind can understand. Your Subconscious Mind Has: -- Difficulty With Concepts Yet Understands Specificity -- Difficulty With Generalities But Understands Specificity And Sensory Experiences -- Trouble With Negation So That Many Times It Does Not Hear The Word No Or Not -- Difficulty With Logic It Simply Doesn't Exist In The Subconscious-It Just Reacts Your Subconscious Mind Also Confuses: -- Similar with same -- Figurative with literal -- Time-gets the past mixed with the present -- And the imagined with real PRACTICE -- Example 1. I really don't know what I am doing! -- Example 2. I am letting my emotions get away from me again. -- Example 3. _______________________________________. Characteristics of these Structures -- Tool 2: Judging The Thought -- Another simple tool is to envision your thought in front of you as if it is in stone. Okay now look at it and ask the following four questions. -- Does it lead to a good feeling? -- Does it lead to a useful action? -- Is it really relevant to the situation you have going on? -- And then is it really an accurate thought? Is it true? OTHER HELPFUL TOOLS -- Have a quiet place -- Take time for yourself -- Breathe deeply! SUMMARY -- Open Up Possibilities -- Remove Blocks -- Free Energy -- Awaken Creativity -- Accelerate Healing -- Generate Excitement -- Inspire Action "Gaining Advocacy Skills to Implement Positive Life Changes And to Solve Personal Advocacy Issues" Advocacy I: Seize the Power Goal of Presentation: To understand the process of how we learn to self-advocate. Stating the Obvious: What Do We All Need? -- Discuss "Maslow's Hierarchy of Needs" -- Compare Maslow's list to the "average" consumer of IL services -- Why does anyone call a CIL anyway? -- Why would anyone need to advocate for themselves? -- Is your house on fire? What Does the Consumer Want? -- Does it have anything to do with what he or she needs? -- Which is more important: learning to travel independently or saving money for a new TV? -- Are you judgmental of other people's personal goals? -- Does anyone want (or ask for) "self-advocacy skills training?" -- Does it matter if anyone can recognize the difference between: -- what a consumer "wants" -- what the consumer "needs?" Assessing A Person's Current Self-Advocacy Skills. -- Who does what? Recognize and understand the person's support system. -- Analyze personal successes and failures - who takes responsibility and/or blame? Identifying an Individual's Goals. -- Wants + Needs (sometimes) = Personal Goals Identifying Barriers to Accomplishing Individual Goals: -- What stands in your way? -- Family? -- Education? -- Government funding? -- Bureaucracy? -- Friends? -- "Support" staff? -- Money? -- Time? -- The consumer themselves? -- Which barriers can be overcome? -- Which barriers cannot be overcome? What Personal Advocacy Tools Are Available? -- Brainstorm with participants. For each advocacy tool identified, the group will actively identify and share proven techniques for learning how to use that tool. -- Telephone calls -- Letters -- Personal contact or personal appeal -- Using your governmental representatives or civic organizations -- Filing "pro se" lawsuits How Does an Individual Measure Success? -- Discussion of difference between personal and systems advocacy: -- How many people can sit and write a letter to their U.S. Senator when their house is burning down around them? "Knowing How To Seek Peer Support and How to Use that Support to Continue Growth in Personal Power" Advocacy I: Seize the Power Goal of Presentation: Understanding true peer support and how it relates to disability culture. Polar forces pull on individuals with disabilities that create a continuum of opinions and attitudes that influence what we want. Understanding these forces and how they affect our opinions on different issues: -- Do we want Segregation or Integration? -- Do we want Special Treatment or Equal Treatment? -- Do we want Disability Pride or The Cure? -- Do we want main stream American Culture or Disability Culture? Group Activity -- Measure yourself on the 1 - 10 scale on each polar force -- How does each person differ? Defining Peer Support -- What it is: -- Permission -- Encouragement -- Support -- How do we nurture a peer support environment? -- What peer support is not CILs building an interdependent disability community using different approaches to implementing a peer support program. -- Plan A - hiring peer counselor; why it doesn't work well. -- Plan B - using skilled staff to cultivate a peer support network. The evolution of Disability Culture -- Disability type specific culture -- Local community disability culture -- Broad based national disability culture Large Group Activity -- Practice examples of: -- Permission -- Encouragement -- Support "Gaining Basic Awareness of Your Disability Rights" Americans with Disabilities Act Presentation Advocacy I: Seize the Power Goal of Presentation: To gain a broad knowledge of the Americans with Disabilities Act and to access materials that can teach others the importance of the ADA civil rights legislation. Understanding the Americans with Disabilities Act Introduction to the Americans with Disabilities Act (ADA) Where the ADA came from and why we need it Why the ADA is important Civil Rights legislation -- Common sense ADA basics: -- Who is a person with a disability (use questions) -- The five parts or titles of the ADA - what they cover -- Language of the ADA - agencies involved in guidelines -- Who has to do what, when, and where -- Who benefits and why -- Who enforces -- Tax incentives -- Summary - Multiple choice questions ABOUT THE TRAINERS June Isaacson Kailes works as disability rights advocate and project developer in the independent living movement. One of the original respected and recognized national leaders in the Independent Living Movement, June has a presidential appointment to the United States Access Board and currently serves as its vice chair. She chaired the Committee on Telecommunication as well as serving as Board's liaison to the Telecommunication Access Advisory Committee and the Passenger Vessels Access Advisory Committee. She also serves on other national committees and boards which include the Alliance for Technology Access and Pacific Bell's Telecommunication Citizens Advisory Panel and the Advisory Group on People with Disabilities. She has held many offices on the boards of the National Council for Independent Living (NCIL) and the California Coalition of Independent Living Centers. Prior to establishing a full-time consulting practice in 1989, June worked for the Westside Center for Independent Living (WCIL) in Los Angeles. During her eight years as executive director, she established WCIL as one of the largest, most respected independent living centers in the United States. June is the recipient of many awards and has written over 50 disability-related publications including numerous articles, book chapters, monographs and training manuals. Her latest popular books include "A Guide to Planning Accessible Meetings", "Americans with Disabilities Act Compliance Guide for Organizations", "Be a Savvy Health Care Consumer, Your Life May Depend on It!" and "Health, Wellness and Aging with Disability." Dan Mayclin is a psychologist who has had a spinal cord injury for 39 years. He has worked in the field of disability for over 30 years. He is currently working as Peer Support Coordinator & Resource Center Manager for the Traumatic Brain Injury Project in San Jose, CA. Dan has held positions as a private Rehab Counselor, a hospital psychologist and private psychologist. Dan also worked as Director of Mission Fulfillment, Disabled Programmers Inc., in San Jose, CA. In 1996 Dan and his wife moved to Dublin, Ireland where he worked as a Management Consultant & Director of the "Peer Counsellor Training Programme", for the Irish Wheelchair Association. Dan and his wife made a training video entitled, "Making the Americans With Disabilities Act Work for You" and also published an article in New Mobility entitled "Changing Ireland" (Dec. 1997). Over the course of many years, Dan has served as a speaker and trainer many times, including providing disability sexual attitude seminars for physicians and other healthcare professionals. Dan has dealt with advocacy issues on an international level where he was the Conference Coordinator & presenter at the International Conference on Peer Counselling in Dublin, Ireland. He also made presentations to the Disabled People's International-Italy Conference. He developed & taught a 5-day training course for Peer Counselors in Finland in 1997. Jim Glozier is the parent of three children and a consumer of services for children with disabilities. Jim has advocated for children with special health care needs at the state, national and international levels for over ten years. He began his career working with parents of children with disabilities in the public interest law field at the Center for Public Representation, a national public policy think tank based in Wisconsin. During his time with CPR he worked in the policy and program areas of the Wisconsin Medical Assistance Program and parent advocacy projects. While living in Wisconsin Jim served as chairman of the Kenosha Interagency Coordinating Council for Birth to Three Programs and as a member of the State Formula Allocation Work Group for Birth to Three Programs. He assisted in the initial development and planning for the State program that administers services to children in Birth to Three Programs. He has served as Research Director for the Free Hand Press Publishers of Mouth Magazine. Jim has addressed issues related to children with disabilities as a trainer and facilitator on a national and international level. Currently he is employed at Tri- County Patriots for Independent Living in Southwestern Pennsylvania as their Advocacy and Training Director. Gloria Nieto is the Executive Director of the People of Color AIDS Foundation in Santa Fe, New Mexico. She is a member of the Democratic National Committee and is the President of the Coalition for Equality in New Mexico. She was one of 12 gays and lesbians invited to meet the President in the White House in 1997. She is currently at work trying to pass legislation in New Mexico to provides specialized case management for Native Americans and to establish an Office of Minority Health. Roberta Sick lives in Little Rock, Arkansas where she is a consultant and trainer. The training she currently provides includes the Americans with Disabilities Act, adaptations of toys for children with disabilities, the use of play as a tool to empower children, enhancing communication, and conflict resolution skills. Her work experience includes 20 years in the areas of personal counseling, advocacy, facilitating groups, vocational training and placement, and coordination of a clubhouse model program for persons with mental illness. She holds a Professional Counseling License and a Rehabilitation Counselor Certification. She is quick to acknowledge that her real training came not from her education but from truly listening to the people with disabilities and their families that have shared their lives with her. Kevin Irvine is an Advocate at Equip for Equality, Inc., in Chicago, the Protection & Advocacy System for Illinois. Mr. Irvine is a person living with HIV and Hemophilia and is a longtime disability rights activist. He is an active member of ADAPT (American's Disabled for Attendant Programs Today), DRACH (Disability Rights Action Coalition for Housing), and Not Dead Yet. He has worked for the Independent Living Resource Center in Albuquerque, New Mexico as a senior IL specialist. While living in New Mexico Kevin organized the New Mexico ADAPT chapter and led actions in the community against the institutional bias of long term care funding. He also organized advocacy efforts around transportation, housing, access and other disability rights issues. Linda Anthony, the Executive Director of the PA Coalition of Citizens with Disabilities, is a leader in disability rights. She is committed to forwarding civil rights of people with disabilities, and works tirelessly to this end on both the state and federal levels. She is Past-President of the National Association for Independent Living (a division of the National Rehabilitation Association). Linda is currently Vice-President of the PA Protection and Advocacy Board of Directors and Chairperson of the Protection and Advocacy of Individual Rights. She sits on the Developmental Disabilities Council, is a member of the PA Department of Public Welfare's Medical Assistance Advisory Committee, and served on the PA Statewide Independent Living Conference in 1993, 1995 & 1997, chairing it in 1995. She is an active member of the PA Attendant Care Advisory Committee and is currently a member of the Board of Directors of the National Council on Independent Living. Kathleen Kleinmann has been the Executive Director of Tri-County Patriots for Independent Living in Washington PA since 1990. She previously worked at Three Rivers Center for Independent Living, in Pittsburgh PA. Kathleen currently serves on the Board of Directors of the National Council on Independent Living (NCIL), the Pennsylvania Statewide Independent Living Council (PA SILC) and the Pennsylvania Council on Independent Living. She is an organizer in grassroots movements through ADAPT (American's Disabled for Attendant Programs Today). Kathleen has been a local and national organizer for ADAPT since 1992 and has been to 12 national actions and countless state and local actions demanding change of public policy on Long Term Care to entitle every American the choice of Home and Community-Based Services. She has also traveled to England to participate in the Disability Action Network (DAN) national action for accessible public transit in Bristol. Under Kathleen's directorship the Tri-County Patriots for Independent Living provides DIMENET (Disabled Individuals Movement of Equality Network) which involves the movement that is dedicated to the equal access of people with severe disabilities with low-incomes to computer networking and the Internet. In conjunction, she supervises the provision of WEB services and email list services to ADAPT and other organizations for organizing purposes. Over the course of many years, Kathleen has served as a speaker and trainer many times, including for the conferences of NCIL, PA SILC , APRIL and IL Net. Woody Osburn has been the Executive Director of the Ohio Statewide Independent Living Council in Columbus, Ohio since August of 1997. He has seventeen years experience as an advocate and activist in both the independent living and disability rights movements. Woody has worked as a Civil Rights Specialist with the Pennsylvania Coalition of Citizens With Disabilities. He has also worked in a Center for Independent Living where he was an Advocacy Coordinator and developed and presented ADA trainings, and performed peer support duties. He has served as Chairman of the Board for the Tulsa Independent Living Center and in 1984 founded a grassroots organization known as Tulsans for Accessible Public Transportation. In addition, Woody has worked as a transportation consultant. He was chairman of the Oklahoma Independent Living Council, and was also Chair when this council was an advisory body. Woody has done numerous trainings on a variety of disability related issues such as effective advocacy, civil rights, and accessible transportation. Barbara Toomer has been a wheelchair user from the effects of Polio in the early fifties. She has been active in issues affecting people with disabilities since 1976. She was one of the founders of the Utah Independent Living Center, Community Shares/Utah, Utah Nonprofits Association and the Disabled Rights Action Committee where she now serves as the Secretary/Treasurer. Currently she is also a member of the Professional Ethics Committee of the Utah State Bar, the Utah Martin Luther King Jr. Human Rights Commission, and the Utah Statewide Independent Living Council She has been a member of ADAPT (American's Disabled for Attendant Programs Today) since 1983 and continues to work with that organization through ADAPT/Utah for the rights of people with disabilities. Introduction The Challenge: Introduction to the Material Section Remembering the Old: Looking Forward to the New History of Independent Living THE CHALLENGE Introduction to the Material Section OK, how many of us, once we get back to our offices, put our conference manuals on our bookshelves-never to be looked at again. I mean, not to be really USED over the course time. My challenge - to develop a "stand alone conference manual" that would get your attention and get you excited to the point that you can't wait to share the material with your fellow staff and consumers! To meet this challenge I knew I would have to put together exceptional articles and training materials that would work in real life. So, I searched the nation over (I believe several times) and only chose articles and training materials that lived up to the following criteria: -- The articles and training materials would have to not only make sense to you, but would also touch your passion from within. That passion that drives you to endlessly strive for the empowerment of all of us with disabilities. -- The articles and training materials would have to have a "common sense flow" to them so that YOU in some way could relate to the message or training. If you make a head and heart connection with what the author is saying or teaching, then your consumers will make these life connections also. -- Lastly, all the articles and training materials will be easily applicable TO EVERY DAY LIFE, so that you can take these materials and USE them over the next several years! I believe that I have successfully put together a collection of articles and training materials that meet all the above criteria (whew-what a challenge that was)! Now YOU HAVE A CHALLENGE. Some of the articles and materials are "geared" toward people with certain disabilities concerning specific subjects. For example, two of the articles in the section of "Beyond Oppression" are written by and directed toward people with psychiatric disabilities concerning specific subjects relating to oppression. Your challenge (which actually is not hard to do) is to read them as if they were written to you and to your consumers with various disabilities. Even though these articles are directed to specific situations such as employment or "helping professionals", the message to all of us concerning the struggle with societal oppression is loud and clear. We can make sense of our own struggles through learning about the struggles others. The SECOND CHALLENGE TO YOU is to take the material in the section "Disability and Diversity" and exchange the words of rehabilitation counseling/services with Independent Living (IL) services. It can't be done you protest! IL services are nothing like rehab! Trust me, if you do this exercise you will see how your IL services do or do not live up to creating empowering situations for people of diversity and disability. Unfortunately there is not a lot out there on the specifics of how our IL philosophy can blend in with cultural diversity. The third challenge is to really use the training materials in the section "Self Advocacy Skills". Actually this is not a hard one either. The training materials are comprehensive and effective. Don't let the 71 page training on "Consumer Involvement in Community Advocacy Organizations" overwhelm you. This is one of the best materials I have found that can be used immediately to start a peer support group that will teach both self and systems advocacy! And if this collection of articles and materials is not enough! The section of "Resources" covers everything from great Internet web sites on advocacy to very specific literature that will fit your very specific needs. The best to you as you continue to work toward the empowerment and justice for all of us with disabilities! Julie Ballinger IL Network Conference Coordinator Remembering the Old: Looking Forward to the New George Covington Disability Advocate ABSTRACT This article addresses the challenges facing advocates, professionals, and legislators with regard to meeting the changing and diverse needs of persons with disabilities. The author advocates for a new era of leadership which will train future leaders who will: a) be sensitive to the needs of persons with disabilities, b) continue to advocate for the civil and human rights of consumers with disabilities, c) change the negative attitudes held by society regarding persons with disabilities, and d) implement policies and programs relative to the inclusion of persons with disabilities into all aspects of American society. The author also stresses the importance of heightening the awareness of the accomplishments and progress made by pioneers of the disability movement. Before I begin talking about "New Leadership for a New Era," I want to talk about leaving my present job. I am going to be leaving the White House staff in January. I had said in April of 1992, that no matter what the election outcome, four years in one job is enough. That was my third attempt to resign, and the Vice President again talked me out of leaving. Earlier attempts were the results of battles between me and the senior staff. I had my priorities and they had theirs. They accused me of running a renegade operation, going outside of the channels, not following procedures, never taking "no" for an answer, going over their heads to get what I wanted, and then hiding behind the Vice President when they came to kill me. And it was all true. But that's the only way I could get anything for us. When I first got there, if I went into a scheduling meeting and said I want to do a disability event they'd say "why?" After the first year they did not do that anymore. We are on the same billing with everybody else and we get to fight just like they fight for time, space, and so forth. I get the same chances as the agriculture interest, as the domestic policy people, as the education people, as the national security people, and so forth. Toward the end, I had a much higher rate of winning than they did. That is because I had a Vice President of the United States who supported me and believed in the issues we believed in. Within a few months after going to work in the White House, I convinced the Vice President that not all disabled people were middle class white men in wheel chairs. I quickly convinced him that we come in all colors and shades, shapes and sizes, and at least two genders. I had the representatives of many minorities in to meet the Vice President. I am going to be looking back over the last four years and remember a lot of very humorous stories. One of the reasons I said I wanted to leave in January, 1993 is so I can write a book about the four years and all the b_ _ _ s_ _ _ I had to put up with; a lot of it from disabled people, and the VP's senior staff. I'll never forget the time when the Vice President opened the Paralympic Finals in Long Island, New York "Who's introducing the Vice President?" I asked. "Well, you know we've got a United States Senator, and we've got a U.S. Congressman, and we've got the Mayor, and we've got a few other politicians, and...and... the County Executive is going to introduce the Vice President." "Is the County Executive disabled?" I asked calmly. "No." "Is anyone who's going to be speaking besides the Vice President disabled?" "No." "The Vice President of the United States will be introduced by a disabled person." I stated in a very firm and slightly cold tone. "But, we can't do that. Everything is all set." "Want to bet?" I said in a firmer and colder tone. At this point I found myself surrounded by the able-bodied organizers of the event and several disabled board members of the organization sponsoring the Trials. My peers were staying out of the line of fire. They were happy to have the Vice President come to the games. They would not fight over symbolic details. To me, it was not a symbolic issue but a political one. When politicians spoke to a constituency, the introduction came from a member of that group. When a politician spoke to a charity, a Good Samaritan did the honors. The major concern was that the County Executive, a Republican who could deliver votes, would be offended if he were not allowed to introduce the Vice President. Representing the County Executive was a young political toad on the rise. "Everything has been set," the young toad said. "My boss has his speech written." "And your boss can give the speech," I said slowly, coldly, and methodically; looking in the direction of the toad. "But after he gives his speech, he is going to introduce a disabled person and that disabled person will introduce the Vice President to the 2,000 disabled athletes and their coaches and trainers. It is ludicrous to have an able-bodied person introduce the Vice President to that many outstanding disabled people." The young toad disappeared and shortly reappeared with a member of the Vice President's advance team and a member of the Secret Service. He had obviously explained the political damage control he was trying to do. I knew immediately that the advance man would take the side of the local toad and do everything he could to guarantee the politician wouldn't have his feelings hurt. "Who do you have on your board who's disabled?" I asked. I asked this strange question because like many disability groups, a large number of their board members are able-bodied. This particular organization has half of its board, able- bodied people, a large enough segment to control policy. The only name that could be recommended was an over-weight blind blow-hard I had known for years. "There's no way that obese slob will introduce the Vice President," I said. "Who is the most articulate person you can think of on your board who also happens to have a disability?" "Well," there was a long pause, "we have Len Sawich, but he's..." pause again, "he's a dwarf!" "I'll take the dwarf. I've never met Sawich, but I've talked to him on the phone several times and he's articulate. He'll do." The young toad began to sputter. Undoubtedly, he could see his career flashing before his eyes. His boss would not be introducing the Vice President of the United States. Instead, it would probably be a short axe-wielding escapee from a Tolkien novel. How was he going to explain to the boss that he was not going to introduce the Vice President but a wee one!! He sputtered, fumed, stated he was going to call his boss, and disappeared. "You can't have a dwarf introducing the Vice President of the United States. We'll have to cut the podium in half," said the VP's advance man. "No we won't cut the podium in half. He'll pull up a chair, jump up into it, and then introduce the Vice President." I said this very slowly as though talking to a child. The advance squad didn't seem to notice. "You can't have a guy standing in a chair introducing the Vice President of the United States!" one advance man screamed. "Wanna bet?" I said through clenched teeth. "What about security?" the Secret Service asked. At this point I was losing my patience, my temper, and my humor. "If he pulls a gun," I said slowly, "lean over and shoot the little bastard!" I was screaming. The advance man literally stomped out of the room. "We'll see about this," he said. "I'm calling the White House on this. You've gone too far this time Covington!" This might be my second chance to resign in two months. The strange thing is, I always had a fear of being fired, but I always found it a very positive feeling when I thought about resigning. I think it's one of these conflicts I'll have to work out in later years. The next morning, I was notified that the County Executive would introduce Len Sawich. Later, I was told by the Press Secretary, "they called the VP and the VP said it's Covingtons's event and we'll do it Covington's way." As the event got underway, each of the politicians received very polite but very cool applause from the crowd. Most of these individuals had competed on the local, state, and regional level to get to the Long Island Trials for the Paralympics. They were advocates who knew what it meant when we said discrimination against people with disabilities. Len Sawich was one of their own. He pulled a metal folding chair up to the podium and jumped up. He looked out over the crowd and waited a few moments. Then, when he had the attention of all 2,000 athletes and their 1,000 trainers and coaches, he began to harangue like a southern preacher. "Do you know why I like Dan Quayle?" He yelled in the microphone. "I like Dan Quayle because he's the first Vice President who ever came to our events. I like Dan Quayle because he doesn't say we're confined, or bound to wheel chairs. I like Dan Quayle because he isn't condescending toward us. He treats us like individuals and people. And most of all, I like Dan Quayle because he doesn't patronize us by calling us inspirational!" He screamed. The 3,000 people on the other side of the track went wild. There was screaming and hooting and applauding that went on for several minutes. Len had warmed the crowd up. The Vice President was genuinely moved. After Len's introduction, he advanced across the podium and hugged Len. This brought more screams and applause from the audience. Quayle then gave his speech. In that speech I had him say: "You are not disabled athletes. You are world-class athletes who happen to have a disability. No one can look at you and see what you do and ever hold the same images and stereotypes again." He ended the speech by saying: "I speak for all America when I say for those of you who win here today and go on to Barcelona, Go For the Gold!" Next to that last line I had put in parenthesis, "Extra Emphasis." Quayle had delivered the speech beautifully, and he yelled the last line. The crowd was ecstatic. As Quayle passed me going down to the track he leaned over and said, "Extra emphasis." He was in a jubilant mood. The next instant, he did something that made me more proud of him than I had felt until that day. Instead of looking to the politicians on the podium, he turned to Len Sawich and said, "Len, let's work the crowd." He and Len shook hands with 3,000 people for more than 30 minutes. During this one event, Dan Quayle shook hands with and talked to more disabled people than all the previous vice presidents in history combined. As the Vice President headed back to his motorcade after a half hour of picture taking with the local dignitaries and a large number of disabled athletes, he stopped to talk with me briefly. "You did a great job today. We've got to do more of this. It was really enjoyable. I really enjoyed myself. Let's try to set something like this up in the near future." "I think it's great. I'll be glad to do it within the next month or so. I'll have it set up. I'll send you a briefing document, you approve it and we'll go with it." "Let's do it." He turned and walked back to the motorcade. It had been a great day. Beckwith dropped by on his way to the motorcade to explain that Bob Woodward was in the crowd. "He's working on a book about the Vice President and was very impressed with the event. You might even make Woodward's book. I think he'll want to talk to you. We'll send him by when we get back to Washington." "Can Harrison Ford play me in the movie?" It's not enough if I am the first person to ever serve as Special Assistant to the Vice President of the United States for Disability Policy. I cannot be the last. The disability community must lobby to keep this slot open. I want to leave but I do not want to leave the slot. We deserve a voice in the White House at all times with the kind of access I had to the Vice President. And if we can't do anything else, we should shame the next administration into trying to match what Dan Quayle did. I think when we do that they will have to find somebody for the slot who will carry on what we have started together not me, but me and you, and the thing is, we won't let it go away. Now, this basically is tying into the old theme of the New Leadership for a New Era, because we are getting ready to enter a new era. You know right now we are looking at a movement that for the first time in our history has a real Civil Rights Law behind it. As I have said to many able-bodied groups in the last six months, I don't care if you're sensitive, we have the law and we are going to kick your ass if you are not sensitive. It makes a difference when you've got the law. You don't have to understand us, you just have to understand the law. All we are asking for is an equal opportunity. That's all anybody coming to this country since its founding has ever asked for. I don't think it's too damn much to ask for it two hundred years later. We have a right to get out there on a level playing field whatever that level playing field is for us. What it is to me as a visually impaired legally blind person is not what it is to a deaf person or a person who uses a wheelchair, be that person a paraplegic or quadriplegic. We all have different needs because we are humans. Every human has different needs. Why is that accepted among able-bodied people? Everybody touts the fact that we are a diverse group of people in this country, but they think all of disabled people are alike. What do they think blind people do at night? Go home, turn off the lights, look at the wall, and have a blind experience...You know, and they look at the dark, isn't that cool...think folks. Do they think all of you wheelies go home and just go around in circles all night? We have got to convince these people that we are just like they are. We can be fools, fakes, and frauds, liars, cheats, and thieves, and saints or sinners. I once was interviewed by a lady at the Boston Globe who after she finished the interview said, "I've heard that all blind people are nice," and I said, "listen, I know two SOBs who are blind who should be in jail, and they are not because they are blind, and able bodied people like you just say oh aren't they nice people." But I said, "listen if you are going to spread rumors, if you are going to spread myths, please do one that will help me a little bit," I said, "it is true that blind and visually impaired people make the best lovers, so please put that in the paper." It did not appear in the Boston Globe. But, the next day I was speaking at a conference on photography for visually impaired people. On the front row there were eight little gray haired ladies that had been brought in from a geriatric center to attend the conference. I told them about the incident with the Boston Globe reporter, and when I got to the part about how we blind and visually impaired people make the best lovers, the little old ladies gave me a standing ovation. I think I hit a nerve. These negative images, myths, and stereotypes are what we must defeat if we are ever going to cross the bridge and join the rest of society. The first ramp we must build is the ramp into the human mind. The barrier to the mind will always be the first and hardest barrier to breach. People must understand that the percentage of disability among minorities is much higher than in the general population. If you happen to be a minority and have a disability, you have an extra burden to bear. You have to fight the dual battle of disability, discrimination, and racism. To survive, we must have a new leadership for a new age. That leadership must understand that the battle will be against the images and myths and stereotypes in the minds of others. We must destroy the symbols of fear that are used against us. One good example is this white cane of mine. It's just four little pieces of metal, but people will cross a street, and get as far off the sidewalk as they can if they see you coming with one of these things. It's nothing but a piece of metal held together by a big rubber band. Yet until AIDS, blindness was the second most feared physical condition in this country, second only to cancer. Blindness, I mean it's unbelievable that such a little bitty stick could cause such incredible reactions of horror. The Harris Poll a year ago indicated that 57% of the people interviewed admitted that they felt discomfort in the presence of a disabled person, 48% admitted they felt actual fear. How are we going to overcome all of this that we have to face when there are so many people who won't admit that they fear us, they don't understand us, they feel uncomfortable with us? The only way, is when they get to know us. It is funny, sadly funny, when people have a family member who becomes disabled. The whole world changes. Their perspective changes. Suddenly, they are there for the person who needs them, and they want to learn all they can. It is up to us to be there to help them. The rest of the general public we have to work on, and we have to do it through a concentrated effort. Right now, there are approximately 2.4 million disabled college students. Last September, statistics showed that one in eleven entering freshman had a disability. This is an incredible improvement when it indicated that in 1978 only one out of sixty-seven entering freshmen had a disability. We are getting out of the closet and into the educational system. Young people going through public elementary schools with a fellow classmate with a disability will learn to accept the disabled child as a normal part of things. They will grow up knowing that we are just like they are, so consequently, proximity will help beat prejudice. For the new era we are going to need to find a new leadership, because many young people, particularly young people in wheelchairs, have never been in an environment where there were not curb cuts. They assume they grew that way. That is like many young African Americans who would tell you they don't know what you are talking about when you remember the Civil Rights days. In 1964, I was a young Republican, who was for Barry Goldwater, and I am still for Barry Goldwater. (Would that make me a liberal today?) On the night I turned 21, I got a free poll tax. Poll taxes were still in existence when I turned 21, and I bet that most of you in this room don't even know what poll taxes were. I do. In 1965, I left the Republican Party, one of the closest guarded secrets on Dan Quayle's staff, and for 27 years I have been a Democrat. I left the party for one reason, because people were dying in the South, and only one group seemed to care, and it was a small group even within the Democratic Party. So consequently, like Will Rogers, I've been a person without a party for 27 years. I've been a Democrat. So, we have got to pay attention to the young people coming up, and make certain that they know that their rights were not always there, and if they are not constantly vigilant at least for one more generation, they might face some backlash if the economy ever goes bad and suddenly funds are not there, and suddenly somebody starts talking about amending ADA. I don't think it will happen, but we've got to get to these kids who were literally a generation ago kept in closets, and teach them what it was we went through in our days. I was born and raised in East Texas. I am from Texarkana, just like H. Ross Perot. Except I am taller, prettier, got smaller ears, and more qualified to be President. I've had more White House experience, and if I had 3 billion dollars I still would not run for President. We have to educate the young, we have to find them, and we have to be able to understand them. I go to meetings like this, when I get together with friends, we are all over 40, some of us are few more years over 40. Folks, you know we can't sit around talking about how great the good old days were. I am not going to ever get to that point in my life. Because I don't think those good old days were ever that damn good. So consequently, we have got to look forward and we have got to keep moving and I can't think of a better person for doing that, quite frankly, than Sylvia Walker. I've known this lady, and she is the closest thing to a sister that I have got. She is one of the few people who has the guts to call me at home at night. She also is one of those people who knows I work on Sunday, but then everybody in Washington knows I work on Sunday. For the past six months, every time I go in I get more calls on Sunday than I do on Saturday, which is usually when I go in too. But it's just a question of us working together and never forgetting the trials and tribulations that we went through. I went through public school because I had more guts than brains. They did not want me there. They wanted me to go down to the School for the Blind, and my family doctor, my family ophthalmologist, said, "don't send him down there, they will just warehouse him, and he'll never learn anything, and he'll never be able to get into society." So, I fought through the system. I didn't know I was fighting though. It's just, I was one tenacious little SOB, and I made it through. But, I wouldn't be able to do that if I had been born Black, not in the South that I was born into, not into the South even today. If you are white you are developmentally disabled, if you are Black you are mentally retarded. It's still there folks, and we better never forget it, and if we do, the old saying is "the price of liberty is constant vigilance." I think all of us in this room have fought more battles than anybody out on that street without a chair or without a cane. We know what it's all about. We know how precious it is to us, and we are going to keep it. Now, we have got to start looking for ways, and I wish I had the answers, I don't. I've just got the questions. But we've got to find these kids, and we've got to show them what leadership is. We've got to show them that there is nothing to be ashamed of because you use a chair or a white cane, you don't hear as well or move as fast. We can do that by fighting the stigmas that they put on us, by fighting the "confined to a wheelchair," or "bound to a wheel chair." I have told numerous groups of journalists, "don't you ever write 'bound to a wheel chair' unless you are talking about kinky sex," because a wheel chair is a freedom machine that gives mobility. That little statement really sticks in their minds. Sometimes we have to startle people to get their attention. We don't have to frighten them, we do that already, because we are different, and it doesn't mean the pigment of our skin. It doesn't mean anything other than we are not understood, but we are getting to the point where we are. Having served in the position that I did for four years and still do for another month or two, I can say that my being there has made a difference to a lot of disabled people. I've been told that it's good to be able to know that I can call you, and you may not be able to help, but you would listen and take the concerns to the Vice President. I tried to introduce the Vice President to as many people as I could. In the past, access has been very restricted. If one person had a friend in the White House, that was their friend, and nobody got to share that friend. My idea of Dan Quayle was a complete opposite. I wanted him to see as many of us as he could, to shake hands with as many of us as he possibly could, and he did. Consequently we can expect, I hope, from the next administration, the same opportunity. One bridge that we can use to train our new leadership for a new age, is the concept of universal design. Our young people must understand that this concept, in one generation, can have a major impact on our society. Using the process of universal design, in the creation of products, places, and services will make our road to the mainstream a lot easier. Universal design is not a difficult concept to understand. If you can design a product, place, or service so that an eight year old female child or an eighty year old woman can use the creation, you will discover that most of us who are disabled will fit nicely on the continuum between the two age groups. The concept is simply common sense. Universal design is a guarantee to wider markets, both within this country and throughout the world. I am certain you have noticed that much of the rest of the world does not have our height, strength, or dexterity. When a product, place, or service is designed to be used by the maximum amount of people, you have created a wider market. These products are not intended "for the disabled." They are intended to be used by a wide range of individuals including most but not all disabled people. Severely disabled individuals will always require certain modifications to guarantee accessibility. However, it is far easier to modify something for a severely disabled person if that "something" is the result of the universal design concept. America, and particularly the baby boomers, are aging rapidly. As ever growing larger numbers of baby boomers hit the brick wall of fifty years, they are discovering that many of them do not see as well, hear as well, or move as well as they once did. We must reach out for these people without frightening them. This "Fifty Plus" group cannot deal with the idea that they may be, or may be becoming, one of us. This group constitutes the most rapidly increasing segment of the low vision market. Yet, most of these individuals will not seek the social services necessary to assist them. We must learn to build bridges to these people without causing them to shrink away in terror. All their lives, they have believed the negative images, myths, and stereotypes about disabled people. As they begin to enter disability, they apply these negative images, myths, and stereotypes to themselves; and it scares the hell out of them. Universal design is a common sense concept that will allow us to teach the young people how to design a better world and older people how they can be a part of that world. The old Star Trek television series always began with the words SPACE - THE FINAL FRONTIER. Space is the final frontier. But, it's the space between the ears. We must fill that space with reality, not myth, with facts, not stereotypes. If we do, we win. If we don't, we lose. History of Independent Living by Gina McDonald and Mike Oxford ______________________________________________________ This account of the history of independent living stems from a philosophy which states that people with disabilities should have the same civil rights, options, and control over choices in their own lives as do people without disabilities. The history of independent living is closely tied to the civil rights struggles of the 1950s and 1960s among African Americans. Basic issues--disgraceful treatment based on bigotry and erroneous stereotypes in housing, education, transportation, and employment -- and the strategies and tactics are very similar. This history and its driving philosophy also have much in common with other political and social movements of the country in the late 1960s and early 1970s. There were at least five movements that influenced the disability rights movement. Social Movements The first social movement was deinstitutionalization, an attempt to move people, primarily those with developmental disabilities, out of institutions and back into their home communities. This movement was led by providers and parents of people with developmental disabilities and was based on the principle of "normalization" developed by Wolf Wolfensberger, a sociologist from Canada. His theory was that people with developmental disabilities should live in the most "normal" setting possible if they were expected to behave "normally." Other changes occurred in nursing homes where young people with many types of disabilities were warehoused for lack of "better" alternatives (Wolfensberger, 1972). The next movement to influence disability rights was the civil rights movement. Although people with disabilities were not included as a protected class under the Civil Rights Act, it was a reality that people could achieve rights, at least in law, as a class. Watching the courage of Rosa Parks as she defiantly rode in the front of a public bus, people with disabilities realized the more immediate challenge of even getting on the bus. The "self-help" movement, which really began in the 1950s with the founding of Alcoholics Anonymous, came into its own in the 1970s. Many self-help books were published and support groups flourished. Self-help and peer support are recognized as key points in independent living philosophy. According to this tenet, people with similar disabilities are believed to be more likely to assist and to understand each other than individuals who do not share experience with similar disability. Demedicalization was a movement that began to look at more holistic approaches to health care. There was a move toward "demystification" of the medical community. Thus, another cornerstone of independent living philosophy became the shift away from the authoritarian medical model to a paradigm of individual empowerment and responsibility for defining and meeting one's own needs. Consumerism, the last movement to be described here, was one in which consumers began to question product reliability and price. Ralph Nader was the most outspoken advocate for this movement, and his staff and followers came to be known as "Nader's Raiders." Perhaps most fundamental to independent living philosophy today is the idea of control by consumers of goods and services over the choices and options available to them. The independent living paradigm, developed by Gerben DeJong in the late 1970s (DeJong, 1979), proposed a shift from the medical model to the independent living model. As with the movements described above, this theory located problems or "deficiencies" in the society, not the individual. People with disabilities no longer saw themselves as broken or sick, certainly not in need of repair. Issues such as social and attitudinal barriers were the real problems facing people with disabilities. The answers were to be found in changing and "fixing" society, not people with disabilities. Most important, decisions must be made by the individual, not by the medical or rehabilitation professional. Using these principles, people began to view themselves as powerful and self-directed as opposed to passive victims, objects of charity, cripples, or not-whole. Disability began to be seen as a natural, not uncommon, experience in life, not a tragedy. ADAPT Wade Blank began his lifelong struggle in civil rights activism with Dr. Martin Luther King, Jr. to Selma, Alabama. It was during this period that he learned about the stark oppression which occurred against people considered to be outside the "mainstream" of our "civilized" society. By 1971, Wade was working in a nursing facility, Heritage House, trying to improve the quality of life of some of the younger residents. These efforts, including taking some of the residents to a Grateful Dead concert, ultimately failed. Institutional services and living arrangements were at odds with the pursuit of personal liberties and life with dignity. In 1974, Wade founded the Atlantis Community, a model for community-based, consumer-controlled, independent living. The Atlantis Community provided personal assistance services primarily under the control of the consumer within a community setting. The first consumers of the Atlantis Community were some of the young residents "freed" from Heritage House by Wade (after he had been fired). Initially, Wade provided personal assistance services to nine people by himself for no pay so that these individuals could integrate into society and live lives of liberty and dignity. In 1978, Wade and Atlantis realized that access to public transportation was a necessity if people with disabilities were to live independently in the community. This was the year that American Disabled for Accessible Public Transit (ADAPT) was founded. On July 5-6, 1978, Wade and nineteen disabled activists held a public transit bus "hostage" on the corner of Broadway and Colfax in Denver, Colorado. ADAPT eventually mushroomed into the nation's first grassroots, disability rights, activist organization. In the spring of 1990, the Secretary of Transportation, Sam Skinner, finally issued regulations mandating lifts on buses. These regulations implemented a law passed in 1970-the Urban Mass Transit Act-which required lifts on new buses. The transit industry had successfully blocked implementation of this part of the law for twenty years, until ADAPT changed their minds and the minds of the nation. In 1990, after passage of the Americans With Disabilities Act (ADA), ADAPT shifted its vision toward a national system of community-based personal assistance services and the end of the apartheid-type system of segregating people with disabilities by imprisoning them in institutions against their will. The acronym ADAPT became "American Disabled for Attendant Programs Today." The fight for a national policy of attendant services and the end of institutionalization continues to this day. Wade Blank died on February 15, 1993, while unsuccessfully attempting to rescue his son from drowning in the ocean. Wade and Ed Roberts live on in many hearts and in the continuing struggle for the rights of people with disabilities. These lives of these two leaders in the disability rights movement, Ed Roberts and Wade Blank, provide poignant examples of the modem history, philosophy, and evolution of independent living in the United States. To complete this rough sketch of the history of independent living, a look must be taken at the various pieces of legislation concerning the rights of people with disabilities, with a particular emphasis on the original "bible" of civil rights for people with disabilities, the Rehabilitation Act of 1973. Civil Rights Laws Before turning to the Rehabilitation Act, a chronological listing and brief description of important federal civil rights laws affecting people with disabilities is in order. · 1964 Civil Rights Act: prohibits discrimination on the basis of race, religion, ethnicity, national origin, and creed -- later, gender was added as a protected class. · 1968 Architectural Barriers Act: prohibits architectural barriers in all federally owned or leased buildings. · 1970 Urban Mass Transit Act: requires that all new mass transit vehicles be equipped with wheelchair lifts. As mentioned earlier, it was twenty years, primarily because of machinations of the American Public Transit Association (APTA), before the part of the law requiring wheelchair lifts was implemented. · 1973 Rehabilitation Act: particularly Title V, Sections 501, 503, and 504, prohibits discrimination in federal programs and services and all other programs or services receiving federal funding. · 1975 Developmental Disabilities Bill of Rights Act: among other things, establishes Protection and Advocacy services (P & A). · 1975 Education of All Handicapped Children Act (PL 94-142): requires free, appropriate public education in the least restrictive environment possible for children with disabilities. This law is now called the Individuals with Disabilities Education Act (IDEA). · 1978 Amendments to the Rehabilitation Act: provides for consumer-controlled centers for independent living. · 1983 Amendments to the Rehabilitation Act: provides for the Client Assistance Program (CAP), an advocacy program for consumers of rehabilitation and Independent living services. · 1985 Mental illness Bill of Rights Act: requires protection and advocacy services (P & A) for people with mental illness. · 1988 Civil Rights Restoration Act: counteracts bad case law by clarifying Congress' original intention that under the Rehabilitation Act, discrimination in AN-Y program or service that is a part of an entity receiving federal funding -- not just the part which actually and directly receives the funding -- is illegal. · 1988 Air Carrier Access Act: prohibits discrimination on the basis of disability in air travel and provides for equal access to air transportation services. · 1988 Fair Housing Amendments Act: prohibits discrimination in housing against people with disabilities and families with children. Also provides for architectural accessibility of certain new housing units, renovation of existing units, and accessibility modifications at the renter's expense. · 1990 Americans with Disabilities Act: provides comprehensive civil rights protection for people with disabilities; closely modeled after the Civil Rights Act and the Section 504 of Title V of the Rehabilitation Act and its regulations. The modern history of civil rights for people with disabilities is three decades old. A key piece of this decades-long process is the story of how the Rehabilitation Act of 1973 was finally passed and then implemented. It is the story of the first organized disability rights protest. The Rehabilitation Act of 1973 In 1972, Congress passed a rehabilitation bill that independent living activists cheered. President Richard Nixon's veto prevented this bill from becoming law. During the era of political activity at the end of the Vietnam War, Nixon's veto was not taken lying down by disability activists who launched fierce protests across the country. In New York City early leader for disability fights, Judy Heumann, staged a sit-in on Madison Avenue with eighty other activists. Traffic was stopped. After a flood of angry letters and protests, in September 1973, Congress overrode Nixon's veto and the Rehabilitation Act of 1973 finally became law. Passage of this pivotal law was the beginning of the ongoing fight for implementation and revision of the law according to the vision of independent living advocates and disability rights activists. Key language in the Rehabilitation Act, found in Section 504 of Title V, states that: No otherwise qualified handicapped individual in the United States shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance. Advocates realized that this new law would need regulations in order to be implemented and enforced. By 1977, Presidents Nixon and Ford had come and gone. Jimmy Carter had-become president and had appointed Joseph Califano his Secretary of Health, Education and Welfare (HEW). Califano refused to issue regulations and was given an ultimatum and deadline of April 4, 1977. April 4 went by with no regulations and no word from Califano. On April 5, demonstrations by people with disabilities took place in ten cities across the country. By the end of the day, demonstrations in nine cities were over. In one city, San Francisco, protesters refused to disband. Demonstrators, more than 150 people with disabilities, had taken over the federal office building and refused to leave. They stayed until May 1. Califano had issued regulations by April 28, but the protesters stayed until they had reviewed the regulations and approved of them. The lesson is a fairly simple one. As Martin Luther King said, "It is an historical fact that the privileged groups seldom give up their privileges voluntarily. Individuals may see the moral light and voluntarily give up their unjust posture, but, as we are reminded, groups tend to be more immoral than individuals. We know, through painful experience that freedom is never voluntarily given by the oppressor, it must be demanded by the oppressed." Leaders in the Independent Living Movement The history of the independent living movement is not complete without mention of some other leaders who continue to make substantial contributions to the movement and to the rights and empowerment of people with disabilities. Max Starkloff, Charlie Carr, and Marca Bristo founded the National Council on Independent Living (NCEL) in 1980. NCEL is one of the only national organizations that is consumer-controlled and promotes the rights and empowerment of people with disabilities. Justin Dart played a prominent role in the fight for passage of the Americans with Disabilities Act, and is seen by many as the spiritual leader of the movement today. 9 Lex Frieden is co-founder of ILRU Program. As director of the National Council on Disability, he directed preparation of the original ADA legislation and its introduction in Congress. Liz Savage and Pat Wright are considered to be the "mothers of the ADA." They led the consumer fight for the passage of the ADA. There are countless other people who have and continue to make substantial contributions to the independent living movement. ______________________________________________________ REFERENCES DeJong, Gerben. "Independent Living: From Social Movement to Analytic Paradigm," Archives of Physical Medicine and Rehabilitation 60, October 1979. Wolfensberger, Wolf The Principle of Normalization in Human Services. Toronto: National Institute on Mental Retardation, 1972. This article is from: ILRU IL Library - IL HISTORY-PHILOSOPHY-CULTURE Archives History of Independent Living CATEGORY: IL History TITLE: History of Independent Living SUBJECT: Independent Living History; social movements; civil rights laws AUTHOR: Gina McDonald and Mike Oxford COST: N/A SOURCE NAME: Access Center for Independent Living, Inc. SOURCE ADDRESS: 35 S Jefferson Street, Dayton, Ohio 45402 SOURCE TELEPHONE: 937-341-5202 SOURCE TTY: 937-341-5217 SOURCE E-MAIL: ryan@acils.com URL: http://www.acils.com/acil/ilhistor.html Content Public Domain Page Generation Copyright 1998 DIMENET and TNET Services All Rights Reserved. Permission given to reprint for the IL Network: NCIL/ILRU National Training & Technical Assistance Project Advocacy I: Seize the Power Beyond Oppression Beyond Oppression: Feeling the Movement and its Power Acquiring Positive Thought Patterns: The Power of Language and Thought Letter to My Friend Who Is Giving Up Sprit Breaking: When the Helping Professionals Hurt Beyond Oppression: Feeling the Movement and its Power! By June Isaacson Kailes, Disability Policy Consultant Acknowledging and discussing oppression experienced by people with disabilities is not given much attention. Oppression does, however, require attention as it locks out many from "feeling our movement." For many people with disabilities, particularly those not exposed to independent living values and philosophy, all there is to the disability experience is oppression. This article explores oppression, why acknowledging it is important and what people with disabilities can do about it. As advocates, we must help people move from being held back and locked out by internalized oppression and move toward adopting a rights-bearing attitude. This attitude enables people to fight for disability rights. Dealing with oppression means helping people move from destructive, depressing, internalized anger to focused, energy-enhancing, externalized anger. It means moving from passivity to activity. It means moving from identifying as a poor oppressed cripple to identifying as a person with a disability who has rights, pride, passion and power! What is oppression? This article defines it as elements in our society that devalue, burden, obstruct, intimidate and just plain get in our way. When it comes to getting people involved in disability rights battles and in feeling our movement, first we have to understand what contributes to people's reluctance to get involved and take risks. Most people with and without disabilities have been and are susceptible to some degree of oppression, often stemming from racism, sexism, ageism and other "isms." However, for many with disabilities, the overexposure and experience of ablism, handicapism and oppression are more significant, more pervasive and much less compartmentalized than that experienced by others. Oppression is learned and ever-present whether in the background or foreground. We must continually acknowledge it, discuss it and work through it by way of friendships with other people with disabilities; at independent living centers through peer counseling and peer support groups; and by strengthening our independent living and advocacy skills. Learned oppression becomes apparent, for example, in a public hearing opportunity. People's negative self-talk and internal scripts are manifested by lack of confidence and can control their ability to participate. Their self-talk goes something like this: "How will I get there? What if there are no curb cuts or no elevators? What if the aisles are too narrow? What if the podium's too high? What if I don't sound polished enough? What if they ask me questions I can't answer? I'd be up there all alone! What if they don't understand me? What if they patronize me?" These projections and assumptions of exclusion and intimidation are based not on speculation but on repeated and real experiences. Society frequently tells us how devalued we are. Visible signs of this oppression and devaluation are alive and well in the forms of environmental barriers, stereotypes, society's values and public policies. Environmental barriers, including communication and physical barriers, are well known to us. Myths and fears stem from stereotypes and attitudes about disability. Society views people with disabilities as biologically inferior; deviant; unnatural; unfortunate; burdens requiring charity and welfare; and having little or no value to society. They view people with disabilities as lacking in skills and talents; outcasts; menaces; asexual; subhuman; fragile; and sick individuals requiring either cure or care! Of course, telethons do wonders to reinforce society's pathological views of disability. These views destroy many people's lives. Society reveals its values in many ways. One very visible example is advertising which creates images about beauty, health, and dress unattainable and oppressive for people with and without disabilities. These images create a norm few can achieve and burdens and degrades people who can't begin to meet this norm. Public policies foster dependence, isolation, poverty, and lack of options and risk taking opportunities among people with disabilities. A 1983 headline in the Los Angeles Times summed it up well, "In case of nuclear attack, evacuate the young, fit and useful first." A current example is the assisted suicide debate, an ongoing discussion of who lives and who dies. Popular opinion reflects the "let's put them out of their misery-quickly" approach as opposed to offering support services and resources. Tim Cook, in his article "A Little History Worth Knowing," highlights some of these public policies. During this century, democratically elected state legislatures referred to people with disabilities as: "anti-social beings" (Pennsylvania) a "blight on mankind" (Vermont) a "danger to the race" (Wisconsin) a "misfortune both to themselves and to the public" (Kansas) a "defect that wounds our citizenry a thousand times more than any plague" (Utah) The list goes on and on! Health care rationing, an ever increasing public policy reality, is like a time bomb for people with disabilities "As technology's ability to keep people alive continues to grow (as does its expense), the question of which people will be of greatest value to society will be applied in making medical decisions! If your long-term prognosis is expensive, the new rationers, do not want you any more than insurance companies do." Must people with disabilities have a short and compelling statement of our social value, social function and current contribution to productivity prepared? Can we educate a medical gatekeeper quickly and decisively about our value, why we should receive medical care and why they should allow us to live? Simply saying, "I want to" will not suffice. For many, these policies, values, stereotypes and environmental barriers have, and will continue to have, a destructive force and wreak havoc in terms of feelings of self-worth, self esteem, self-concept and self-pride. These devaluing feelings get internalized and fertilize the seeds of self-hatred. Why dwell on oppression? Am I into pity parties? NO! I dwell on oppression because the disability community must understand what prevents people from joining our movement and feeling its power. If we seriously want to increase the troops and groom new leaders, we have to understand oppression and how to deal with it. Dealing with it means we are not part of the oppression. We need to stop oppressing others with our language and prevent others from oppressing us with language. The following paraphrases Elaine Popovich's article "You and I." Do we play the "we/they" game? They are residents, we reside; they are admitted, we move in; they are aggressive, we are assertive; they have behavior problems, we are rude; they are noncompliant, we don't like being told what to do; when we ask "them" out for dinner we call it an outing, when we ask one of "us" out we call it a date; and they learn household skills while we hate housework. Do we allow independent living centers to oppress people through language like "the people we serve," and "our consumers." Should they say client, consumer, case or person? What about quasi-professional language that communicates subjectivity and bias, promotes distance and sets up we/they and superior/inferior dynamics? Instead of open cases why not active? Why not serve coordination or helping people get what they want instead of case management? Do we need managing? Other changes to consider: --getting to know the needs of the individual instead of intake or client needs assessment --older person who has functional limitations instead of frail --personal attendant or family helper instead of caregiver, care provider, care taker or personal care. We must ensure the language we choose does not reduce an individual's sense of self-worth, self-direction and power. Unfortunately, sometimes even inter-disability politics reflects oppression. We find it easier to pick on each other than to fight the oppressive system. It is easier to pick on powerless people than on powerful people, especially if we feel powerless. Remember, united we stand, divided we fall. When people don't get involved, we have probably all thought or said at some point, "Well, they just aren't motivated!" This explanation is too simplistic as well as inaccurate. What we do about oppression is not so simple. How do we help people identify and get in touch with various aspects of oppression and how it effected or continues to affect them? We need to help people get in touch with covert and overt negative messages they receive about their disabilities and assist in the exploration of the messages' origination. We need to talk about what we do to counteract the negative messages. We need to share our stories. For example, I got a message veryearly in my life that, if I wanted to do what everyone else was doing, I would have to hide my disability. If I hid it and denied it, I could "pass." To me passing meant being treated like everyone else and allowed to participate equally. I picked up early the negative, devaluing stereotypes, misconceptions and myths about disability that permeate society. However, I could not verbalize these frightening feelings. I know these messages affected the development and maintenance of my early sense of self-worth and self-esteem. I remember only one role model and he certainly reinforced my decision to "pass." The role model was a man with cerebral palsy who walked around my neighborhood selling pencils. It did not appear to be a great future to look forward to. In addition, I received strong messages from television about who and how acceptable I was as an individual with a disability. If you had a disability in the 1950s, you certainly didn't become a member of the Mickey Mouse Club or have friends like the Beaver; Dennis the Mennis; Sky King; Donna Reed; The Flintstones; Tom Terrific and his dog Manfred; Ozzie, Harriet, David and Ricky; or Lucy and Ricky. These characters did not have friends with disabilities. People with disabilities obviously didn't use the phone, drink soda, brush their teeth, drive, shave, use deodorant or play with toys. In other words, you rarely, if ever, saw a person with a disability on TV. When you did see someone with a disability on television, the messages were clear! These poor unfortunate folks were sick, childlike, helpless victims or burdens in need of care. They represented passive, unfulfilled, evil, lonely, isolated, angry, embittered and depressed people consumed by their disability. Telethons, with their "pity-me" approach to fundraising, reinforced these themes. These messages remain vivid in my memory. It took years of struggle to recognize these messages objectively as a compilation of many inaccurate stereotypes. By sharing these difficult and painful experiences, we can foster group solidarity and common bonds. We recognize that people with and without disabilities share some of these experiences through being subjected to ablism, handicapism, racism, sexism and ageism. This exploration can help people move beyond oppression toward externalizing anger, action and liberation. We need to talk with people about the negative by-products of disability stereotypes and what to do about them. We need to identify the strengths that result from living with disability, some of which include stronger, more resilient values values that devalue treasured societal standards of physical perfection; view physical characteristics as shallow, superficial and easily changed by uncontrollable and common occurrences like accidents, illnesses, and aging; and view people's personalities and spirits as most important. We need people to understand the all-too-common statement, "I never think of you as disabled," is NOT a compliment but another reflection of society's pathological view of disability. People who make this remark can unconsciously communicate a denial of your reality and a negation of who you are. It says, "Your disability is not a valuable part of who you are and, if I thought of you as having a disability, you would be less than a regular person in my eyes." It is equivalent to saying, "I never think of you as a woman, mother, Puerto Rican, Native American, or Hispanic! "This form of oppression is more subtle. The message is, "Because you are successful, I will negate your disability." People who make such statements buy into disability stereotypes and exempt you! This became clear at Tim Cook's memorial service when friends paid him tribute by saying, "He never seemed disabled to me," Joe Shapiro wrote, in his book No Pity, " 'He was the least disabled person I ever met.' It was the highest praise these nondisabled friends could think to give a disabled attorney who had won landmark disability rights cases, including one to force public transit systems to equip buses with lifts. More than a few heads in the crowded chapel bowed with an uneasy embarrassment at the supposed compliment. Here in this memorial chapel was a clash between the reality of disabled people and the understanding of their lives by others. It was the type of collision that disabled people experience daily." How do we help people gain insight into oppression so they understand it and can then put oppression in its proper place? We need to help people see barriers as problems with public policy rather than elements of personal restrictions and impairments. Have we helped people challenge these barriers? Hale Zukas, an advocate from Berkeley, CA, is fond of saying, "When you're fed garbage all your life, you develop a taste for it." Si Kahn, an organizer says, "All of us are partly what we think we are, and we think we are what we've been told we are." Have we helped people redefine themselves? Have we helped people adopt a rights-bearing attitude and take the "Activist Leap," the understanding that society has obligations to us and the issues are civil and human rights? Have we helped people further stretch to understand that all people with disabilities have much in common and that together, through powerful coalitions, we can move this rights revolution? Have we helped people get to "aha experiences " so they no longer accept the garbage? These issues are often not intuitive. People need assistance to understand them and part of our role is to provide that assistance! It doesn't just happen! Insight and understanding don't get passed along from one generation to another if the parents don't have disabilities and don't identify with the independent living philosophy. Oppression is a continuing theme which is never fully resolved. We have to keep revisiting it, examining how it can bog people down and stop them from taking action. It takes work to recognize oppression and break the oppression cycle. It means adopting a way of viewing disability different than society's view of disability. It takes peer support, role models and time. It is always easier to do for people than to bring people along! We need to bring people along, help them identify elements of oppression and get in touch with anger, which then leads to involvement, action and liberation! Sometimes we have to agitate people to not accept the unacceptable. People have to get angry. Converting oppression to anger means converting it to action and power. What have you done to help people recognize their anger as legitimate and to direct that anger? What have you done to help people take the activist leap? What have you done to help people understand the extreme importance of identifying as people with disabilities; feel the passion, the pride and the power; and build coalitions to move this revolution? Have you helped people get these insights, these "aha experiences," feel the movement and stop accepting the garbage? Remember, when focused, anger is the fuel that makes change! Anger generates the spark, which lights the fire, which fuels the passion, which taps those hidden reserves of strength and energy to act! It's up to us, so let's get to work! Adapted from remarks made in keynote addresses: 1. Power Through Knowledge: Feel the Movement! Pennsylvania Statewide Conference on Independent Living, Harrisburg, PA, October 13, 1995 2. Systems Advocacy: Beyond Rhetoric: Attic, Vincennes, Indiana September 12, 1996 Copyright 1995: Revised 12/96 All rights reserved. No part of this article may be reprinted or reproduced or utilized in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without prior written permission from the author. June Isaacson Kailes Disability Policy Consultant 6201 Ocean Front Walk, Suite 2 Playa del Rey, CA 90293-7556 (310) 821-7080 (v) (310) 827-7470 (fax) http://www.jik.com jik@pacbell.net Acquiring Positive Thought Patterns: The Power of Language and Thought Stop Talking To yourSelf And Start Talking To YOU! Do you talk to yourself? Sure you do. What Are We Really Telling Ourselves? Can we change the commentary in a way that will make us feel better and accomplish more? Following are some clues to changing patterns that can be self-defeating. The goal is not to stop those thoughts but to change them into powerful tools that will work for you. These methods of promoting self-esteem and empowerment are applicable in our communication with ourselves as well as with others. A. OBJECTIVES 1.) Look at our words in a new and different way. 2.)Become more aware of the power of these words and of what we say to ourselves and others. 3.) Gain a new perspective on what we say to ourselves and then begin to change the messages to influence us so we feel better and accomplish more. B. WHAT WE SAY TO OURSELVES Write down below some of the things you say to yourself. Here are some things that others have shared to get you started. Examples: I just can't get myself motivated. I am not a very good advocate. I really don't know what I am doing. I am letting my emotions get away from me again. Look at what you have written and see how many of them are really helpful to you. There are literally hundreds of self-help books and many of us have read them. Yet still when we are asked to write down some of the things we say to ourselves, how many of them are truly helpful? C. THE WAY WE LOOK AT THINGS It is often said that our negative thoughts create our bad feelings. Now there's a helpful concept for us to reinforce every time we try to change a thought! Why not think of it like this. Our positive thoughts create our good feelings. Now there is some good news to use! D. DESCRIPTION OF OUR MIND Different people and groups give names to the places in their heads that help to originate these thoughts. Many people say they just come out of nowhere. Here are some labels others have used. Self-help books may call it the inner voice. Alcoholics Anonymous members may call it the conversational critic. Alanon members may call it the committee that meets in my head. Counselors or Therapists often times call it the subconscious mind. Whether or not you are aware of it, or what you may call it, the point is, we all have a running commentary in our heads that gives a play by play of what occurs in our life. While many people understand the power of this voice, others just listen. They don't make any efforts to understand it or to change the messages that it gives. That's what this is about. Understanding what you are really saying to yourself and how with some awareness, it changes. This in turn will help you with what you think and say to yourself and more importantly, what comes to you to think and say to yourself. It will also help with some of those things that are influencing you just below your level of awareness. Let's start with agreeing together that our mind has basically two parts, the conscious part and the subconscious part. Here is a list of some of the characteristics of each. OUR MIND Conscious Mind A Stream of Awareness Directs Purposeful Activities Can Reason and Use Logic Can attend for a limited time, to a limited number of things Subconscious Mind Positively Intentioned Controls Physiology Directs Emotions Creates Dreams Source of creativity Information Storehouse Directs many activities simultaneously Directs activities over an unlimited time span Directs most of what is going on Has difficulty with logic Can mistake similar for same May take things literally Can confuse past and present May have difficulty understanding negation What you go out of your way to avoid is dangerous What you go out of your way to do of be near is safe Takes over what you consciously repeat Confuses what is imagined with what is thought to be real Taken from presentation by Jon Connelly (1995). Used by permission. E. BIOLOGICAL VIEW Lets look at this from a biological view. We could get very detailed here but for our purposes - simple is good. We are primarily concerned with three structures of the brain. Three Structures of the Brain · Cerebral cortex · Limbic System · Brain Stem Characteristics of these Structures: Cerebral cortex · -Logical · -Alert · -In contact with daily surroundings · -Looks for an effect for every cause and a cause for every effect · -Can modify the instinctive reaction of the subconscious mind - Limbic system -Source of motivation -Source of emotions such as fear and aggression - Brain stem -Oversees reproduction -Self preservation -Vital body functions The cerebral cortex is the smart part. It is the part of the brain that is logical, alert and that is in contact with daily surroundings. This part of our brain tries to find a cause for every effect and an effect for every cause. Very logical this part! All vertebrates from reptiles to mammals have what scientists have called the "Reptilian Brain". This part oversees reproduction, self-preservation, and vital body functions and is more widely known as the brain stem. The limbic system is the source of motivation as well as emotions such as fear and aggression. This along with the brain stem makes up our subconscious mind. Often it just reacts. You hear people talk about the fight or flight response. This part of the brain is where it originates. How often as advocates in independent living do we find ourselves in that response? So looking at this in this way, doesn't it make sense to learn how to try and talk to ourselves in a way that our subconscious mind can understand and in a way that is helpful as opposed to harmful? Sure it does! F. TOOL 1: SHOOTING THE CONVERSATIONAL HOOPS Now that we have established that, let's look at some of our thoughts that we wrote down and think about them in a slightly different way. This is where we begin to understand and change simply because - we are aware. As we look at these statements let's see if they make it through these three hoops. The goal is to have our communication go through any of the hoops that apply. Look first at 1 then 2 and then 3. Not all of our thoughts will necessarily have all three components yet this process definitely gives us something to realize as we analyze using this different way of looking at things. Here is a helpful tip. Many times we spend so much time lamenting what we can't do that we forget to state what we truly want. We must begin to be effect driven in our communication in order to help us move to being positively intentioned. Hoop 1.) You want to say things you agree with. Hoop 2.) You want to say things that are beneficial and that you are better off believing. Hoop 3.) You want to say things in a way that the subconscious mind can understand. Let's look more in-depth at these hoops to see what needs to happen to get through them. Also to help understand this better let's pretend that you are trying to restate your original statement back to yourself. As we each try to shoot the hoops tell yourself what you heard. Get through those hoops as you do it! Hoop 1: You want to say things you agree with! That is pretty self-explanatory. Getting through hoop 1 is sometimes easy but gets harder when you then look at what you said as in relation to hoop 2. Hoop 1 Examples: I keep forgetting the words when I give a speech. OKAY SOME WILL SAY YES I DO THAT-makes it through hoop 1 maybe maybe not. While in the past you might have done that, is it truly helpful to tell yourself this. Wait till we get to Hoop 2 with this one. I am not a very good advocate. Some of you will try and tell yourself this. Think about it really though. If you still agree with the statement then maybe we will give you hoop 1 but wait till you get to hoop 2 and see what happens. Hoop 2: You want to say things that are beneficial and that you are better off believing. The most descriptive way to think about hoop 2 is "Don't poison the air for despair." How often do we do that? Just thinking about this line alone can have dramatic effects as we begin to hear what we are truly saying to ourselves. Many times you get through hoop 1 only to fail hoop 2. Hoop 2 Examples: I keep forgetting the words when I give a speech. BENEFICIAL? HELPFUL TO BELIEVE? I think not!!!! So what is the point here. Positive thoughts make us strong and negative thoughts in the past have made us weak. Hear that part, it was subtle. Let's do it again, in the past negative thoughts have made us weak. I am not a very good advocate. Okay, it's another self fulfilling prophecy statement. What was it we said in the beginning, "What are we really telling ourselves?" You figure this one out. Hoop 3: You want to say things your subconscious mind can understand. We have already established how powerful our subconscious mind (or whatever you individually call it) can be. You can tell from these examples that what we are saying to ourselves and to others is very powerful. To really get hoop 3 we must understand more about how our subconscious mind processes and what it hears. Your subconscious mind has: Difficulty with concepts yet understands specificity Difficulty with generalities but understands specificity and sensory experiences Trouble with negation so that many times it does not hear the word no or not Difficulty with logic it simply doesn't exist in the subconscious-it just reacts Your subconscious mind also confuses: Similar with same Figurative with literal Time-gets the past mixed with the present And the imagined with real G. PRACTICE Lets look again at our examples. Now is the time to see if we can apply some things. Remember: When it misses a hoop just stop and change the words to go through the hoop. Sounds easy let's try it ! Example 1. I really don't know what I am doing! Hoop 1: The truth is you probably do know what you are doing or you wouldn't have been asked to do it or be doing it to start with. Even if we can talk ourself into believing that we made it through Hoop 1 - Does it make it through Hoop 2? Now is this a helpful thing to think when we are working on a project. You decide. Example 2. I am letting my emotions get away from me again. Hoop 1: Are you really? What is it that you are doing? Are you crying, are you anxious, are you throwing chairs? Or are you just feeling some emotions. Gosh that is something we sure don't want to do. Tell yourself that the next time you are well ....never mind. Hoop 2: Is this a beneficial thing to say to ourselves? "Just the facts mam" as our friend Sergeant Friday used to say on Dragnet. Let's start to think in terms of what we want for ourselves. Remember not to poison the air for despair. Example 3:____________________________________________________ H. TOOL 2: JUDGING THE THOUGHT Another simple tool is to envision your thought in front of you as if it is in stone. Okay now look at it and ask the following four questions. 1.) Does it lead to a good feeling? 2.) Does it lead to a useful action? 3.) Is it really relevant to the situation you have going on? 4.) And then is it really an accurate thought? Is it true? So look at the thought in that stone now .realizing that as you are looking at it that it doesn't make you feel good, does not lead to a useful action, it leads to nothing useful for you and there is some real question as to whether it is relevant or true. Kind of like taking a jack hammer to it isn't it? I. OTHER HELPFUL TOOLS -have a quiet place -take time for yourself -Breathe deeply! J. SUMMARY So as you can see to effectively communicate with ourselves and others, in a way that is empowering, you must know the effect you want to have and then be aware of the effect you are having on yourself and others. As you practice this, you will be amazed at what you begin to realize. Here is your gauntlet challenge. As you practice and begin to understand what you are saying, pat yourself on the back. Your conscious mind is now in tune with helping you to open up possibilities, remove blocks, free energy, awaken creativity, accelerate healing, generate excitement, inspire action. One more thing, BE PATIENT and HAVE FUN. Go for it!!!!!!!!!!! K. RESOURCES AND SUGGESTED READING Burns, D. D. (1993). Ten Days to Self Esteem, New York: Quill William Morrow. This book includes ten steps can be learned which help to defeat depression, develop self- esteem and improve quality of life. It can be read alone or used as a participant's guide for assisting with self-esteem training groups. Burns, D.D. (1989). The Feeling Good Handbook, USA: Penguin. This is a handbook that gives some simple steps that can be followed to help people understand how to feel better. Connelly, J. (1995). Transformational Communication, Orlando, FL: Author This is a workshop handout used by Mr. Connelly in training seminars that he conducts across the country primarily for mental health professionals. For additional information on seminars conducted by Mr. Connelly contact, Jon Connelly Seminars, 7512 Doctor Phillips Blvd. Suite 50-267, Orlando, Florida. Donaldson, M.C., and Donaldson, M. ( 1996). Negotiating for Dummies, Foster City, CA: IDG Books Worldwide, Inc. A reference guide based on the popular "Dummies" series. This is a book for anyone who needs to learn to get what they want with dignity and honor yet wants an easy to read version with a familiar layout of the principles. Jeffers, S. (1987). Feel the Fear and Do It Anyway. New York: Fawcett Columbine. This includes dynamic techniques for turning fear, indecision, and anger into power, action and love. It is simple to understand and can be used as leisure reading with some powerful payoffs. NOTE: Appreciation is extended to Mr. Jon Connelly, LMSW, for permission to use and expound upon some of his training concepts in order to develop these materials. Letter to My Friend Who Is Giving Up By Patricia A. Deegan, Ph.D. Northeast Independent Living Program 130 Parker Street Lawrence, MA 01843 Presented at the Connecticut Conference on Supported Employment Sponsored by the Connecticut Association of Rehabilitation Facilities I would like to thank you for this opportunity to speak with you today. It is encouraging to see so many program staff, users of supported employment services and state agency representatives here today. Later in the afternoon I will be conducting a workshop entitled "The Empowerment of People with Psychiatric Disabilities." At that time I will present a more technical introduction to the concept of individual and collective empowerment and will help workshop participants understand how the empowerment process is an integral part of the process of recovery. However, during this address, I plan on doing something a little different. During this conference we have talked a lot about the value of supported employment for persons with psychiatric disabilities. Indeed, all of us gathered together here today share a common understanding of the powerful transformations that can take place in people's lives when they have the opportunity to develop and exercise work skills in real life employment settings. But it is important to understand that there is a difference between "employment" and "Vocation." Today there is a lot of discussion about how to help people with psychiatric disabilities secure and maintain employment. Yet there is virtually no understanding of the need that people with psychiatric disabilities have with regard to discovering and developing their own unique vocation. The word vocation and the word employment are not interchangeable. What we do for work in a paid employment setting may be a part of our vocation, but it is not the totality of our vocation. The word vocation comes from the Latin vocare, which means "to be called." Each of us, in our innermost being, senses that we are called, that we are unique, and that we are graced with certain gifts. And because each of us senses that we are called, we also feel a restlessness in our hearts as we seek to answer that call. As our vocation evolves, we seek to discover, develop and actualize our gifts in answer to that call. We seek to discover, to use, to express, to share and to have our special gifts valued by the human community. Thus, to be human means by definitions that we are not complete. We are not finished products. We are always on the way. We are always growing and discovering who we are. The philosopher Martin Heidegger captures the incomplete and always evolving essence of being human when he says that to be human means to be a question that is seeking an answer. And this process of being called and seeking to answer that call, of discovering who we are and of becoming as fully human as possible, is the ontological call of all human beings. However, for those of us who have been diagnosed and treated for mental illness that process of vocation, that process of being called and answering that call, is often disrupted. Too often being diagnosed and treated with mental illness means that we are no longer viewed as individuals who are being called with a unique, never-to-be-repeated vocation. Rarely are we seen as people who are graced with certain gifts that seek to be discovered, used, expressed, shared and valued by the human community. Too often to have a psychiatric label means that we are viewed as "finished products" or as people whose futures are completely predicted by prognoses that sound more like prophecies of doom. But today I would propose to you that people with psychiatric disabilities share the same ontological vocation as all other human beings. The prognoses and prophecies of doom are wrong. We are not "finished products." Our fates and our futures have not been sealed by virtue of having a psychiatric disability. We, too, are being called to a special vocation, although at times it is very hard to believe this deep intuition when we surrounded by stigma which undermines our self-esteem. It is hard to trust this deep intuition when we have been taught to distrust and dismiss the promptings of our heart as being "crazy." Yes, we too experience the ontological vocation of becoming as fully human as possible, even if we must try to do so in systems which sometimes act to dehumanize us, rather than help us to become more fully human. Furthermore, I would propose to you that the real work which faces people with psychiatric disabilities is to become empowered to overcome the prophecies of doom and despair which enshroud us by virtue of having been diagnosed and treated for a mental illness. Working in a pre-vocational work unit in a clubhouse, or working in a transitional employment placement, or working in supported employment placement these can be important tools in our journey of recovery. But I would argue that our real work, our real vocation, is to passionately pursue our own journey of recovery. As people with psychiatric disabilities, our real work is to recover not only from mental illness, but also from the effects of dehumanization, stigma, and learned helplessness. Our real work is to realize that we are not broken things that need to be fixed, but rather that we are called to become a new creation. In the face of overwhelming odds, we are called to undo the soul-killing effects of the degradation and dehumanization that we have suffered. We are called to reclaim our dignity. We are called to empower ourselves, and in so doing, reject the prophecies of doom and to reject the stigma we have internalized. We are called to reclaim our ontological vocation to become as fully human as possible. We are called to discover our beauty and our capacity to love, even though we have been so deeply wounded. We are called to discover and share our gifts and our talents. We are called to celebrate that sanctity of our lives, our strength, our courage, our hope and our endurance. This is the real work and the real vocation of those of us with psychiatric disabilities. Now this all sounds pretty nice on paper. But how does what I am saying translate into the everyday world of people with psychiatric disabilities and those who seek to serve them in their journey of recovery? Perhaps I can begin to answer this question by sharing an experience I had recently. The other day I called a friend who regularly attends a team meeting at the Northeast Independent Living Center where I work. It was her turn to chair the meeting and to present a topic of concern to those of us with psychiatric disabilities. In any case, I called my friend up to ask her how her preparations for her presentation were coming. When she answered the phone, her voice sounded distant and hollow. Her voice sounded like a broken reed through which a cold November wind was blowing. Though she spoke words, her words did not say nearly as much as the sighs that escaped her lips. Her sighs were the sighs of someone who was bone weary and collapsed. Her sighs were those of one whose whole being was at once aching and wishing to be numb to the pain of it. I knew my friend was in trouble. "Pat," she said, "I'm giving up. I won't be coming to the meeting. I'm notifying you that I am quitting the team meeting. I also quit M*POWER a few weeks ago and I quit working at the Club. I just can't go on. For two years now I have been trying with all of my strength to recover, and for a while there, I was starting to make some progress. It was like a big mountain and I started to climb it. I started to feel hope again. After twenty years of mental illness, after twenty years of going around and around in the same circle, I started to break out. My hopes started to get up and I started to believe I could really climb that mountain. I started doing more and more. But these last few weeks have been a landslide. I've slid all the way back to the beginning. Nothing has changed. It's a cruel joke to get your hopes up. It just sets you up to get crushed again." "Well, it's over for me now. I quit. I'm giving up. That mountain can't be climbed. I quit trying. I'm burning all the bridges. I've moved back home. I just don't care anymore. I just have to accept that I'm defective. I have an illness, just like they say. I don't care anymore. I quit." I asked my friend, "What was the name of that mountain you were trying to climb?" "Oh," she said, "You know, the mountain of normalcy, just trying to be normal, live in an apartment, have a job like everyone else. I was just trying to get normal." My friend and I continued to talk for a while and I felt deeply moved by our conversation. I felt prompted to write a letter to her and all people who are feeling like giving up. I entitle this piece A Letter to My Friend Who is Giving Up. Dear Friend: I believe you when you say you are giving up. I can hear the exhaustion in your voice. I can hear the pain in your heart. I can hear your anger and your sense of betrayal. You are right. Sometimes it seems like a cruel joke to dare to get our hopes up and to think that we are really beginning to live a really real life and then to find ourselves sliding backwards with our hopes and dreams crushed but one more time. It makes perfect sense to want to give up. To keep working on our recovery is very hard sometimes. Sometimes giving up seems like the better alternative. It's such a scary thing to begin to hope again. When we were younger, before we got sick, we dared to dream dreams for our lives. We dared to think of becoming professionals, or going to college, or getting married or developing a trade or craft. But once we got put in mental hospitals and were told we had incurable illnesses, our hopes and dreams seemed to shatter all around us. Once we got out of the hospital, we desperately tried to put the pieces of our dreams back together again. But with each subsequent hospitalization, with each relapse, or with each failure, our dreams got crushed all over again. Our dreams and our hopes got even more crushed as we watched our friends get jobs, or get married, or start their professions. We were not stupid. We knew that with each passing day we were falling farther and farther behind our peers. In time, it became apparent that we would probably never catch up with them. And I understand the cynicism and anger in your voice when you tell me that compared to where your high school friends are today, your "progress" in the clerical unit seems like a joke. And that type of comparison, which we all make at times, crushes our spirit and our hopes even more. And finally there is the stigma and the prescribed role of learned helplessness and patienthood that we have had to endure. It seems that we were systematically told that we could never follow our dreams and hopes and really become real people who live in the real world. Rather, we were consistently told to avoid stress and to learn to cope. But let's face it, avoiding stress translated into being bored. And we know that being bored is stressful That's quite the double-bind, eh? In any case, the stigma and despairing messages did not just stay in our environments. Slowly we internalized all of the stigma and despair that surrounded us. We came to believe that we were as useless and as helpless and as hopeless as we were being treated. We learned to settle for less and less and actually began to believe that was all we could be. And this was the most dangerous part. It was like a darkness began to settle over our hearts. The flame of hope and dignity began to fade under the dark shadow of oppression. It was a type of dying: the death of hope, the death of dreams, and the death of humanness and our individuality. And the answer, the only way to survive this kind of living death, was to give up. The professionals called it apathy and lack of motivation. They blamed it on our illness. But they don't understand that giving up is highly motivated, highly goal-directed behavior. For us, giving up was a way of surviving. Giving up, refusing to hope, not trying, not caring: all of these were ways to try and protect the last fragile traces of our spirit and our selfhood from undergoing another crushing. And so today you tell me you are giving up and quitting your work of recovery. And I understand that way of surviving. But there's only one problem with that strategy: although it's possible to quit, to sever ties and to give up trying, it is not possible to completely stop caring. To be human means to care. In a sense, to be human means to be condemned to caring. There is an old myth which says it this way: Once when the goddess named Cura (or Care) was crossing a river, she saw some clay. She thoughtfully took up a piece and began to shape it. While she was meditating on what she had made, Jupiter came by. Care asked him to give it spirit, and this he gladly granted. But when she wanted her name to be bestowed upon it, he forbade this and demanded that it be given his name instead. While Care and Jupiter were disputing, Earth arose and desired that her own name be conferred on the creature, since she had furnished it with part of her body. They asked Saturn, the father of time, to be their arbiter. He made the following decision, which seemed a just one. "Since you, Jupiter, have given its spirit, you shall receive that spirit at death; and since you Earth have given its body, you shall receive its body. But since Care first shaped the creature, she shall possess it as long as it lives. And because there is now a dispute among you as to its name, let it be called 'human' for it is made out of the earth (humus). So you see, to be human means to be condemned to care. Care is what shapes us and gives our humanity its essence. Care possesses us as long as we live. Only in death will we be freed from care. And so, my friend, even though it is possible to give up. It is not possible to stop caring. It matters that you are giving up. It matters to you and it matters to me because we care. You are giving up because in some way, you are trying to be "care-full." You are trying to protect yourself. And that is okay. It's part of the recovery process. My friend, it is so important to remember that recovery is a process. In the process of recovery we make progress and we slide back. We live through the vissitudes of hope and despair, and above all we learn to survive, not just as victims, but as people who can turn reaction into action that is self-directed. Thus, we never get 'recovered." We are always on the way. However, our Western culture often confuses the model of the hero with the process of recovery. In our culture the model of the Hero is the model of a superior individual who, in one or two acts of dramatic courage, overcomes all obstacles. And all of us who have begin the journey of recovery have, at one time or another, fallen into the trap of confusing the process of recovery with the model of being a hero. At these times we summon huge amounts of determination and strength and with all out effort become heroes who try to slay the dragon of mental illness, learned helplessness and oppression. Remember how you said that for the past two years you have been trying to climb a mountain? Like a hero, you were trying, in a magnificent and glorious act of fortitude, to climb the mountain of normalcy. You wanted to slay the dragon of mental illness and upon reaching the summit arrive at the goal of being normal. Upon reaching the summit, you hoped to finally feel like one of the "real people" who have not had to endure what you have lived for the past twenty years. But the hard truth is that recovery is not about heroically conquering mountains. The model of heroism fails us as a model of recovery. Heroism assumes the existence of superior individuals who, in an all out effort, fight a single battle and win. In all models of heroism there is a defined goal and a clearly defined end. But for us the goal of our recovery is never completely clear. It is always ambiguous. We are never fully sure of who we are going to be in the end. The model of the hero also fails us as a model for action and spiritual support because, for us, there is no clearly defined end in sight. There is no day, no one moment in time when we will be suddenly cured. The model of heroism fails us because there will be no one single moment when we will stand on top of the mountain of normalcy and triumph victorious over mental illness, learned helplessness and oppression. The task, our vocation, is not to become normal. Our vocation is not to become live everybody else. Our vocation is to become who we are called to be. The model of heroism fails as a model for recovery. For me, the model of the survivor works much better than the model of the hero. Those of us with psychiatric disabilities know what it means to live in extremity. Thus we share many of the experiences of other people who have had to survive in situations of extremity. For instance, many of us can relate to this experience of a survivor of Auschwitz: Every morning the survivors will had to be renewed and it was not through some secret fortitude of the heart but through the physical act of getting up. The pain might be enormous, despair complete, but the commitment to that day, to that much more existence was made. I climb down onto the floor and put on my shoes. The sores on my feet reopen at once, and a new day begins. (Des Pres, 1977, p.85) Just like our fellow survivors, those of us with psychiatric disabilities know how hard it can be to swing our legs over the side of the bed and stand up to begin a new day. Sometimes the pain is enormous. Sometimes the despair feels complete. But nonetheless, we make the commitment to just one more day. We shake off the mind- numbing exhaustion of our psychotropic drugs and we step out into the day. We have no heroic expectation to conquer the day or to find a cure in it. The commitment is to simply live it. Yet the miracle is that if we dare to make the commitment to simply live the day, if we dare to revolt against the prophecies of doom and stigma which surround us, if we dare to swing our legs over the side of the bed, stand up and seize the day one day at a time, something wonderful begins to happen. We begin to heal. We begin to experience a sense of dignity. We become more than a victim. We move from being passively pushed around by our environments to being survivors who are passionately pursuing our journeys of recovery. Healing does not happen quickly. We cannot will or command healing to happen. Healing comes at a level prior to what can be willed. For instance, healing "comes" in the same way that sleep "comes." When we want to sleep at night we usually lay down on the bed. But we do not immediately fall asleep. In other words, we fake it for a while. We begin to curl up, fix the pillow in a certain way, perhaps let out a certain weary sigh, and finally begin to imitate the breathing and bodily posture of the sleeper. And then by some mysterious process which we do not understand, a moment arrives when sleep "comes." Sleep comes and settles on this imitation of itself which we have been offering to it. Thus we succeed in becoming what we were trying to be, one who is sleeping. (Merleau-Ponty, 1962) The same is true for healing in the recovery process. We cannot will healing to happen to us. However, just like in the example of sleeping, we can assume the posture of one who is surviving and recovering. We can swing our legs over the side of the bed, stand up, face the promise and the pain of the day, seize the day and live it. This is the posture of recovery. And although it cannot be willed, healing will come in its own time, in its own way. Healing and recovery will slowly come and settle on this 'imitation' of itself which we have been offering it. And so my friend, recovery is not about heroism. It's not about climbing mountains. It's not about trying to get normal. It's not about slaying the dragon of mental illness. It is about living this day and in so doing, not allowing despair to come over us. Recovery does not happen to heroes through some secret fortitude of the heart. It happens for ordinary people like me and you who, upon awakening, swing our feet over the edge of the bed and stand up. We stand up and look the day squarely in the face knowing that today will not bring total cure or total relief from our pain. It means rather than despairing in the face of our pain, we seize the day with a fierce determination that only survivors know. It means that we head out for our supported work placement or our TEP or our pre-vocational work unit. It means that we do this work with pride and we are not ashamed. We do this work because it is part of our vocation. It is part of our recovery. It is a step in our project to become who we are called to be. My friend, we have not been called to lives of meaninglessness and uselessness. We certainly have not been called to be normal. Rather, we have been called to discover, share and celebrate the unique and precious gift that we are. That is our vocation. Oh, and one final postscript. You said you were burning all your bridges. No way, my friend. There are no bridge between people. There are only arms that reach out and can be connected. Right now you are exhausted and collapsed from all that mountain climbing you were doing. For right now you have withdrawn your arms and wrapped them about yourself in order to protect yourself. That makes good sense. By my arms and the arms of the rest of us on the team are still reaching toward you. When you are ready, please reach back. Someday I'll need you to do the same for me." That is the end of my letter to my friend. But before I even got a chance to write or send it to her, we received a note from her. I would like to use her words as a closing to my talk with you today. She wrote: We've all known so much pain and so many years of struggling, that I feel we share a bond the likes of which the so-called 'normal' world will never know. I consider it a privilege to be associated with people who have survived and survived and survived again, but still have the courage, the compassion, and the humanity to keep on striving and care about themselves and reach out to touch others in trouble. Although the rest of the world perceives us as different and pretty much useless, I think we're about as special as you can get. Thanks again for not giving up on me and I'm looking forward to seeing you again. Spirit Breaking: When the Helping Professions Hurt By Patricia Deegan, Ph.D. As published in The Humanistic Psychologist Volume 18(3), pp. 301-313 Abstract Too often the human services dehumanize and depersonalize those who come to receive services, as well as those professionals who provide physical disabilities and people with psychiatric disabilities are frequently hurt by helping professionals, the phenomenon of "spirit breaking" is introduced. Suggestions for re-humanizing the human services are made. Including new models for clinical interaction that serve to empower rather than disempower service recipients, and the contributions that people with psychiatric disabilities are making in their own state and national movements for social justice and the right to humane treatment and rehabilitation services. Recently I was asked to speak with a group of graduate students in clinical psychology. In preparing my talk I reflected on what the most important message was I could share with these young people who would soon enter professional practice. The message I felt called to share was rather simple: People with disabilities are people. When we forget that people with psychiatric disabilities share a common humanity with us then the human is stripped from human services and the stage is set for the emergence of the inhuman and the inhumane. The inhuman and the inhumane emerge from that rupture which occurs when one human being fails to recognize and reverence the humanity and the fundamental sanctity, sovereignty and dignity of another person. Such a rupture in mutual relatedness occurs often in the helping professions and for this reason, helping professionals sometimes hurt rather than help people with disabilities. Too often the human services dehumanize and depersonalize. Many people with disabilities refer to this special kind of hurt as "spirit breaking," or "how the system tries to break your spirit." I think we can all learn from the paper I shared with those graduate students. It went like this: Being a student is very important work. Beyond merely mastering a finite content area of study and becoming proficient in clinical practice, we also have the obligation to develop and articulate our values and the ideals which form the foundation of our clinical praxis. We must take the latter aspect of our work very seriously, because when we leave the university setting and enter the day-to-day business of clinical psychology it is very easy to become compromised in our values and ideals. It is easy to lose sight of our humanity as the common ground we share with those who come to use for help. When we make the transition from being a student to being a professional clinician, our culture and human service institutions grant us a broad range of power over the lives of people who are in distress. With that power comes enormous responsibility and great risk. Our responsibility is to never lose sight of the fundamental sanctity, dignity and sovereignty of another human being no matter what their diagnosis may be, no matter how "regressed" or "poor" their prognosis may be and no matter what their disability may be. The risk is that the power which is granted and which we also assume as clinicians, can begin to eat away at our values and ideals such that we fail to safeguard and uphold the fundamental sanctity, dignity and sovereignty of those whom we seek to serve. The danger is that we can over identify with the professional roles we play and forget the people we are. The danger is that our minds can become severed from our hearts such that our human hearts no longer guide, inform or shape our work with people. In my years of experience working as a clinician in public sector mental health, as well as my experience as a recipient of mental health services, I have found myself needing to ask some difficult questions about the power granted to clinicians: about the way we assume this power as privilege; about how this use of power can erode our values and ideals; about how our use of this power can systematically disempower those we are supposed to be serving; and about how it can oppress and sometimes hurt the people who come to us for help. These are some of the questions I find myself asking: Is there room for the human heart in the human services? Why does working in human services sometimes feel so dehumanizing? Why Does receiving human services sometimes feel so dehumanizing? Why do we use the language of war rather than the language of love in the human services? For instance we talk about sending staff out into the field to provide front line services to target populations for whom we develop and implement treatment strategies, whether they want them or not. There are no easy answers to these questions. However I am confident that the only way to overcome the forces of dehumanization is to be bold and daring and brave enough to be fully human in the places where we work and to always recognize that we work with people and not with disabilities or diagnoses. This may seem self-evident, and yet this simple ethic is routinely ignored. For instance, in Rosenhan's now classic study entitled Being Sane in Insane Places he exclaims: Neither anecdotal nor "hard" data can convey the overwhelming sense of powerlessness which invades the individual as he is continually exposed to the depersonalization of the psychiatric hospital. (p. 256) I, too, have experienced the effects of depersonalization and dehumanization. Below is the account of one such experience: It was nighttime. Nighttime in a mental hospital. If I looked out the wire mesh windows I could see the stars assuming their winter formations in the bitter cold December sky. To me the stars were beautiful. To me they were like beacons of light from another time and place. It was good to see all those stars breaking through all that darkness. And though they gave no warmth, the stars shone through the darkness as a promise, as a hope. But that was on the outside. On the inside of the mental hospital, things were very different. In some ways nighttime in a mental hospital is the hardest time. It's hard because you have to stay still long enough to fall asleep. You have to be with yourself, alone and in the dark, with the sound of your own heart beating lonely and scared and in pain and so far away from the people you love. So far away and all alone. And as you lie there at night, sounds amplify and echo down the great empty corridors. Some sounds you get used to real quickly, like the jangle of keys locking and unlocking doors and bathrooms and elevators and nurses stations. You get used to the sound of the keys that separate those who can leave and those who have to stay, those keys that separate those who get to go home and those many who have no home to go to. You get used to the sound of the keys jangling and echoing down the empty nighttime corridors real fast. But there are some sounds you can never get used to. Like the sound of a man strapped down in restraint and crying out "Help. Help me. Someone please help me." When I first heard him crying out, I jumped out of bed and hurried down the hallway. What I found amazed me. There, outside the door of the seclusion room, was a mental health worker sittings with his legs swung casually over the side of a soft lounge chair. He had parked the lounge chair outside of the open door from which the cry was emanating. The mental health worker was flipping through a magazine. He appeared to not hear the cry of the man in the seclusion room. Actually, it was as if he didn't even recognize that the patient in that room was a person who was in great distress. Quietly, I slipped past the mental health worker and looked inside the seclusion room. An old man, probably sixty or so, with white hair and very thin, was strapped down on a green rubber mattress. Heavy leather cuffs lashed his wrists and ankles to the cold steel of a metal bed frame. He was stripped naked except for his underwear. When I saw the mental health worker sitting in casual comfort outside of the room in which a man was restrained, humiliated and crying out for help, I froze in terror and disbelief. For a moment I could not move. I felt numb. Then I felt a tearing pain inside my heart. You see, if you are a patient in an mental hospital and you hear a fellow patient who is in restraint and who is crying out for help, you are not allowed to answer the cry. You are not allowed to be fully human, to be whole and therefore able to respond to another human being compassionately. You are not allowed to go into that room, next to the old man and talk softly to him. You are not allowed to bring him a drink of water or to wipe his brow or to just sit there with him so that he will not feel so abandoned. In fact, if you respond humanly and with compassion, you get punished. That is, if you are a patient in a mental hospital and you try to go in and comfort a person who is crying out from the seclusion room, you get an initial warning from the staff and, if you repeat the violation, you get your "privileges" revoked for the day. There is such a great irony in the fact that mental patients get punished for responding to the fullness of their human hearts to the cry of another person who is in distress. That is, there is an anguished feeling of having "fallen to pieces," or of being "shattered," or "fragmented" that often is a part of the experience of mental illness. To respond as a whole person, as a wholly human being, to the cry of another patient, is actually a response that could be healing. Indeed, the word "whole" or "wholeness" has the same etymological root as the word "healing." To respond as a whole person to the cry of another would be healing. But such a response is punished. Thus an opportunity for healing is lost, while brokenness, fragmentation and dehumanization are reinforced as prescribed roles for staff as well as patients. I knew that to stand for too long in front of that seclusion room was dangerous. And so I turned quickly away and returned to my bed. But I could not sleep. Instead, I lay in my bed, my eyes open, staring into the darkness and listening. The old man kept crying out all night long. He kept saying, "Help me. Help me " Sometimes his voice was strong like a lion. At these times I would hear his voice crying out loud and strong and insistent. At other times, I could hear his voice weaken and quaver, like the sound of a lost and broken child. As the night wore on, his voice grew hoarse and dry and weary and drugged. By dawn, his voice became more of a whisper haunting down the empty corridors. It was a terrible thing to hear that man's struggles. All night I heard that man crying out in an effort to save the last vestiges of his dignity. I heard that man struggling against overwhelming odds to assert his humanity in an environment which was utterly dehumanizing. I heard his voice rising up like a blaze in the darkness, trying to leave a mark or a streak or some trace of dignity before being swallowed up in the darkness and oblivion of chemical restrain. The voice I heard was a human voice. His message was perfectly clear, "Help me." But the staff did not hear that simply human voice. Perhaps they thought they were hearing a symptom? But it was not just the man in restraint who got hurt that night. I, too, was very deeply wounded. Something inside of me started to break that night. In my heart I felt a deep aching and a profound sense of outrage. My anger was not a symptom of mental illness. Anger is never a symptom of mental illness. The anger and outrage I felt were human responses to an inhuman situation. During the course of that dark night a kind of numbness settled into my soul. I felt powerless, helpless and trapped in a situation over which I had almost no control. I did not intend for my heart to close up tight and numb. It happened almost like a reflex, like a way of surviving in a place that is not good for the human heart. It is so important we understand that I am not describing an isolated, "merely personal" experience here. In fact, I would argue that a majority of people with disabilities have experienced what I am speaking about. In clinical language we might refer to this as an experience of trauma, with subsequent emotional constriction or numbing (van der Kolk, 1987). Sociologists who study the impact of institutionalization might help us understand the impact of dehumanization and depersonalization on people in total institutions (Goffman, 1961). However, to fully understand this experience, we must look further than clinical explanations. In many respects, people with disabilities who have lived the experiences of dehumanization, trauma, and depersonalization are the real experts. When those of us with psychiatric disabilities come together and talk among ourselves, we don't use clinical language. Instead, we talk about the experience of "spirit breaking" or we refer to times when "they almost broke my spirit" or the times when "they broke my spirit." We use our own language and discover our own words in order to reclaim our experiences and validate them. As Paulo Friere (1989) helps us understand, overcoming the effects of dehumanization and oppression means "each man wins back his right to say his own word, to name the world. (p.13)" Indeed, the first step in overcoming oppression is expression. That is why it is so important to listen to people and allow them to find their own words in order to name their own world. The experience of spirit breaking occurs as a result of those cumulative experiences in which we are humiliated and made to feel less than human, in which our will to live is deeply shaken or broken, in which our hopes are shattered and in which "giving up," apathy and indifference become a way of surviving and protecting the last vestiges of the wounded self. This experience is not confined to any one disability group. It can and does happen to people with mental retardation, people with physical disabilities, people with head injuries, people who are blind, members of the deaf community and people with psychiatric disabilities. For instance, I work with a man who has a spinal cord injury. He tells of a time his spirit was very nearly broken and a deep, reflexive numbness settled over his heart. His story goes like this: At fifteen years old he had been recently paralyzed from the neck down. He was lying naked, under a sheet, on his hospital bed. A group of interns came into his room, led by a chief resident who was conducting rounds. Without asking permission, the chief resident ripped the sheet off the fifteen year old boy and exposed his naked body for all to see. They boy began to scream and scream and scream. Just like the old man in restraints, that outraged scream was the desperate assertion of the boy's dignity. Dignity safeguards that sacred, inviolate place within the human heart wherein dwells the very integrity of the human spirit. It was this deepest sense of spirit, of self, of dignity that had been violated. The boy gave witness to that violation in his screams (Des Pres, 1976). But the doctors failed to hear the humanness of the boy's cry. Instead, they ordered that he be given tranquilizing drugs. And it was at this point when he had been rendered powerless and helpless, when no one would listen to him or embrace and acknowledge his humanity, that a numbness began to settle into my friend's heart. That was when he experienced his spirit as being deeply wounded and beginning to break. It is clear those doctors did not respond humanly and with compassion to the cry of a real person. Just like the mental health worker, who sat in comfortable indifference outside the door of the seclusion room, those doctors failed to realize the patient was a real person. I would argue that because both the mental health worker and the doctors failed to see patients as people, they became a little less human themselves. As Paulo Friere puts it, dehumanization "marks not only those whose humanity has been stolen, but also (in a different way) those who have stolen it (p. 28)." That is how the terrible cycle of dehumanization works. When helpers fail to see and hear the personhood of the people they work with, and when we see diagnoses and disabilities rather than human beings, then we as helpers become a little less human ourselves. We become a little less able to respond from the fullness of our human hearts to the cry of another person who may be in distress. And it is precisely in situations and relationships which are dehumanizing that people with disabilities suffer the experience of spirit breaking. The experience of spirit breaking is not confined to specific places. In other words, it does not just happen in mental hospitals or state schools or rehabilitation hospitals. It can and does happen in community residences, outpatient medication clinics, vocational rehabilitation programs, private practice, homeless shelters, clubhouses and respite centers. For instance, I know a man with a psychiatric disability who approached his community case manager and stated that he "wanted help making friends and getting a girlfriend." The case manager responded: "What? You can't expect me to pimp for you!" My friend was deeply hurt and humiliated by this comment. He says the cumulative impact for this and many other humiliating experiences at the hands of helping professionals, nearly broke his spirit. Spirit breaking can and does happen in any environment in which there are people who have power and people who have been stripped of their power to direct their own lives and make their own choices. It can happen in any environment in which there are those in a position of dominance and those who are deemed to be subordinate. It can happen in environments where there are people who are considered by implication to be superior, because they are surrounded by people who are labeled as inferior. Simply put, it occurs when we relate to people as if they are disabilities, as if their personhood is disabled, and as if somehow, they are not real people at all. But the point is, people with disabilities are real people. The man in restraint was not a "madman." First and foremost, he was a human being. The teenage boy in the hospital bed was not a "quadriplegic." He was a human being. We are not "disabled people." We are people with disabilities. Our personhood must always come first. It is offensive to refer to us as "the mentally ill" or to refer to people with physical disabilities as "the disabled." We are people with mental illness, people with psychiatric disabilities, people with physical disabilities. If our personhood does not come first, that is if we are perceived as disabilities and diagnoses rather than as human beings, then the relational foundations which result in dehumanization and spirit breaking are laid in place. Striving to be as fully human as possible is the only way to overcome the forces of dehumanization. Humanizing the human services is a task which begins with you and me. Jean Baker Miller (1976) and Janet Surrey (1987), and other women of the Stone Center at Wellesley College in Massachusetts are pioneering a new and exciting theory and praxis of clinical work, which suggest how we might enter into therapeutic relationships that avoid the pitfalls of dehumanization and depersonalization. The Stone Center scholars note that traditionally and culturally we have come to understand power as signifying domination, control and mastery. In other words, we equate power with "having power over someone or something." Human service institutions grant clinicians power in this sense of the word. In fact, the "sicker" a person is perceived to be, the more power and control we are expected to exercise over nearly every detail of their life. The theorists at the Stone Center argue that these traditional, institutionalized power relationships are dehumanizing, precisely because they lack the possibility of true mutuality. These are hierarchical relationships in which clinicians have most, if not all, of the power and patients have little if any power to control their own lives, destinies and the resources effecting their lives. These hierarchical and paternalistic relationships not only set the stage for dehumanization to occur, but also prescribe a role of passivity, dependence, and learned helplessness for the patient (Seligman, 1975). Esso Leete (1988), a woman who has been diagnosed and treated for schizophrenia and is a nationally recognized spokesperson in the consumer/expatient/psychiatric survivor movement, captures the essence of the effects of such disempowering and dehumanizing relationships when she says: I can talk, but I may not be heard. I can make suggestions, but they may not be taken seriously. I can voice my thoughts, but they may be seen as delusions. I can recite experiences, but they may be interpreted as fantasies. To be a patient or even an ex-client is to be discounted. There is an alternative to such hierarchical, dehumanizing and disempowering relationships. Again, following the lead of the Stone Center theorists we find that by definition "power" can also mean the capacity to move or produce change. Surrey (1987) helps us to understand that power need not mean "having power over" but can mean "having power with" or "having power together." She urges us to enter into relationships that are mutually empowering for both the clinician and the client. Relationships between professionals and clients are empowering when both parties are available to "be moved by" the thoughts, perceptions and feelings of the other. In such empowering interaction, both people feel able to have an impact on each other (Stiver, 1985) and on the movement of "flow" of the interaction. Each feels "heard" and "responded to" and able to "hear," "validate," and "respond to" the other. Each feels empowered through creating and sustaining a context which leads to increased awareness and understanding. Further, through this process, each participant feels enlarged, able to "see" more clearly and energized to move into action. The capacity to be "moved" and to respond, and to "move" the other, represents the fundamental core of relational empowerment. (Surrey, p.6-7) Because power is often related to the ability to control another person, Surrey (1987) and the other Stone Center theorists recognize that relational empowerment means learning new ways to relate to clients. It means learning how to have power with rather than power over those who come to us in distress. It means learning how to work with another person such that neither the clinician nor the client is "in control." Rather, both can learn to experience themselves as being heard and responded to as well as being moved and moving the other. Clearly, this model holds promise for helping us understand how to re-humanize the human services. However, it remains to be seen how (and even if) these insights and values can be incorporated into human services institutions, which seem almost by definition to operate on the hierarchical principles of having power and control over patients/inmates. Certainly clinicians can help re-humanize the human services, but my real hope for achieving this goal rests with the community of people with disabilities. There are over 43 million people with disabilities in this country. We are the largest minority group in America. Slowly but surely we are becoming organized and empowered to act. The recent passage of the Americans with Disabilities Act (ADA) is a landmark piece of civil rights legislation for us. The ADA confirms what we have known for a long time. That is, whereas clinicians usually insist the disability resides "within us," we understand that what is truly disabling to us are the barriers in our environment preventing us from living out the full range of our human interests and gifts and preventing us from living, loving, worshipping and working in the community of our choice. What is truly disabling to us is stigma which, though rampant in the general population, is also widespread in the helping professions. In human service institutions, policies and clinical/rehabilitation praxis, stigma often disguises itself as a kind of benevolent paternalism or the sympathy of "false charity" which Friere (1989) characterizes as follows: False charity constrains the fearful and subdued, the "rejects of life," to extend their trembling hands. True generosity lies in striving so that these hands whether of individuals or entire peoples need to be extended less and less in supplication, so that more and more they become human hands which work and, working, transform the world. (p.29) These stigmatizing and infantalizing attitudes are disabling to us. In addition to the stigma we find discrimination in employment, housing and education are disabling. Poverty, oppression, segregation and unemployment are conditions we find disabling. Staff attitudes characterized by low expectations, prophecies, and prognoses of doom, as well as policies, procedures and practices which teach us to be passive, helpless, dependent and irresponsible are also disabling to us. Finally, those aspects of the human services which dehumanize and break (or try to break) our spirit are disabling to us. These wounds "numb" or at times "break" our will to live, rob us of hope, and instill a deep sense of apathy, despair, personal worthlessness, and self-hatred. Many of us experience these wounds as more disabling than the mental illness or physical injury/syndrome we may have been diagnosed with. It is these wounds that take a long, long time to heal. My real hope for re-humanizing the human services rests with people with disabilities as we begin learning that we can organize, that we have power in our numbers, and that we can overcome oppression through expression. The days of silence are over. As professionals and as fellow human beings, we have a great deal to learn from the people we seek to serve. It is important to listen to people with disabilities. For instance, Bill LaLime is a member of a Massachusetts grassroots organization made up entirely of people with psychiatric disabilities. This organization is called M*POWER (Massachusetts People/Patients Organized for Wellness, Empowerment and Rights). Mr. LaLime has written about his struggle to remain human while receiving what, at times, can only be characterized as "inhuman services." He also suggests what we can do to help bring about change: I want to have my story written down so I can remember where I've been and so I don't forget what I've been through. If I have it on paper, I know it's not a lie; it's something I've been through. If people read our stories, they know what we have been through. People who haven't been through what we've been through need to hear our stories so they'll know what we experience. The system sucks. I've been though the whole nine yards. The system has to change. One way we can help it to change is to tell our stories. I couldn't fight the system myself; it was really hard. They tried to break me to a point where I lost my values. There were things happening that could have broken my spirit. But I still had enough of myself to keep going, even though I got sick and tired of being locked up. When I went in the hospital, I lost my values, my intellectual thoughts, my thinking, my self-esteem. I know it's my values that I lost. Values means my morals. They force you to do things against your will, against your values. When I was at [a well-known private hospital], they drugged me with medication and when I got up in the middle of the night, I didn't know where I was and I fell against a metal hinge with my back and had a big black and blue mark, and it was bleeding. I told the nurse and asked her to look at it and she did, but she wouldn't do anything about it. She said, "What happened to you?" and I told her. She and the other staff said, "Just lay down in bed and rest and it will go away." But it didn't go away. I kept complaining to the staff. I asked for aspirin but they wouldn't give me anything for the pain because there were no doctors on call. They kept telling me to wait till the next shift and they wouldn't do anything about it. And then the next shift would tell me to wait for the next shift, and on and on. Finally, on Sunday morning, I told a mental health aide I'd been trying to get help for my hurt back for three days and the aide told me to wait until it goes away. I said I couldn't wait anymore and threw the aide against the window, and they finally took me to the hospital to get some treatment for my back. At [an in-patient community mental health center], they took my cheese away from me. I was eating too much food that day, and at night they took my cheese away from me and I got violent. I threw a chair at them and they locked me up, and I swallowed money to aggravate them while I was in seclusion. They were watching me through the window. I'd say, "here's a coin. I'm eating it," and I'd swallow it. They'd laugh at me, and they'd say, "Swallow another one." And so I'd do it again. I'd swallowed thirteen coins in all. I stopped because they lost interest, they weren't amused anymore and they went away. When I was in the hospital, the loneliness in there and no one to talk to, the only ones to talk to were the other patients. It was a horrible thing. Other patients meant a lot to me. It was beautiful. They helped me a lot. The patients kept me going. The way they felt, too. We talked about our problems outside the hospital. I got very discouraged, because when I left the hospital, I couldn't visit my friends because I was a former patient and there was a rule against my visiting. I felt lonely after I got out of the hospital. At [ ] and other hospitals, they took my rights away. I wrote letters, but I never got any back because the staff wouldn't give them to me, or if they did, they opened them first and read them. I didn't have that much privacy. I couldn't bring my girlfriend in my room. Or every five minutes they came in to check on me. Without privacy, you feel you can't trust anyone. I lost my freedom. The locked doors, I couldn't leave. I was very scared by that. I didn't have many visitors because they didn't like where I was. They were scared to come visit because of where I was. I was very lonely. Talking on the phone to my teacher and minister kept me going, because they knew what I was going through. I'd tell my minister and my teacher and they could see how I was. For example, Thorazine made me slur my words. They were concerned about me, but the staff weren't concerned. They didn't care. I was in a state hospital. I was in the shower and four men patients came in and raped me, and the guard, who was watching, laughed about it. I remember and I don't forget about it. You're in a daze in there. Visitors stare at you. Once they gave me Haldol and I was screwed up for seven hours. My neck muscles were all tightened up and my legs were all locked up. I was on the floor for seven hours because of this reaction to Haldol. They gave me two shots of Benadryl, but it took two or three hours to work. I didn't know what happened to me. My mouth tightened up and I tried to tell them I was having a bad reaction, but I couldn't talk well and they told me I was just fine, there was nothing wrong with me. But I wasn't fine. The stuff I've been through was like a nightmare. Sometimes I go back into the nightmare. I cry every night about it. Remembering it is like being in the nightmare again. But I'm going to remember it till the day I die. It will be with me for the rest of my life. Sometimes I scream at night because I've dreamed about the hospital I was raped in or some other hospital I was in. When I came home from the hospital I was raped in, I went to a lake where I could listen to the birds chirping in the sky and I could watch the waves on the water, and it gave me peace of minds, and if I wanted to scream, I could and no one would hear me. I was all alone and it was really beautiful. If I'm up in my room by myself, I can think about my own problems. It isn't easy, but I can deal with it. Today, I don't have to think about it so often. We need better doctors, people who care and help people. We need to say what we want, what the problems are. If they can't listen the first time, we go back again and again until they'll listen to us. Things might not change overnight. But if we can come together as a group to work towards change, it gives us something to look forward to. Bill LaLime is right. We need better doctors. We need people who care and who can help people. We need people who will listen to us and if they don't listen we need to keep going back until they do listen. References Des Pres, T. (1976). The survivor: An anatomy of life in the death camps. New York: Pocket Books. Friere, P. (1989). Pedagogy of the oppressed (M.B. Ramos, trans.). New York: Continuum. Goffman, E. (1961). Asylums: Essays on the social situations of mental patients and other inmates. New York: Anchor Books. LaLime, W. (1990). Untitled speech used as part of Lowell M*POWER's Anti-Stigma workshop, Lowell, Massachusetts. Leete, E. (1989). The role of the consumer movement and persons with mental illness. Presentation at the twelfth Mary Switzer Memorial Seminar in Rehabilitation, Washington DC, June 15-16. Miller, J.B. (1976). Toward a new psychology of women. Boston: Beacon Press. Rosenhan, D.L. (1973). On being sane in insane places. Science, 178, 250-258. Seligman, M.E.P. (1975). Helplessness: On depression, development and death. San Francisco: Freeman. Stiver, I. (1985). The meaning of care: Reframing treatment models. Work in Progess, #20. Wellesley, MA: Stone Center Working Papers Series. Surrey, J. (1987). Relationship and empowerment. Work in Progress #30. Wellesley, MA: Stone Center Working Papers Series. Van der Kolk, B.A. (1987). Psychological trauma. Washington DC: American Psychiatric Press. This article originally appeared in The Humanistic Psychologist, Autumn 1990, Volume 18(3), pp. 301- 313 Disability Diversity What Do You Mean We're Not All the Same? Disability And Cultural Diversity The Leadership Responsibilities of People of Color with Impairment in the 21st Century Building Networks in the Latino Community: A Mechanism for Empowerment Outreach Services For American Indians Rehabilitation Counseling For Asian Americans: Psychological and Social Considerations Problems of Providing Services to Persons with Disabilities from Minority Groups Skills Development for Multicultural Rehabilitation Counseling: A Quality Of Life Perspective African American Women with Disabilities: An Overview Independent Living and Women with Disabilities What Do You Mean We're Not All the Same? By Gloria Neito Key Concepts v Our manners and customs are so natural to us that we are seldom aware that they are part of our own cultural ways. v All human interactions are influenced by the beliefs, values and practices of each person's culture. v A person's culture provides direction and meaning to life's experiences. v Culture provides rules that govern a person's behavior, including the cultural for promoting, maintaining and restoring one's wellness. v Human beings have the right to be assessed within the framework of their own cultural ways. v The goals of cultural care are to maintain as many customs as possible or make any adaptations as necessary and select only the harmful practices for repatterning. v Ignorance of cultural patterns can alienate people you would like to reach. Primary Dimensions of Diversity -- Ethnicity -- Race -- Gender -- Age -- Sexual Orientation -- Physical Qualities Secondary Dimensions Of Diversity -- Family values, structures and systems -- Socio-political factors -- Acculturation process/continuum -- Language and communication factors -- Community culture -- Military experience -- Spiritual/religious beliefs -- Historical consideration Challenges of Working with Diversity -- Racial and ethnic diversity -- Class issues -- Heterosexism and homophobia -- Sexism -- Ageism -- Disability Language Attributes, Knowledge Area and Skills Essential to the Development of Cultural or Ethnic Competence Personal Attributes: -- Personal qualities that reflect genuineness, accurate empathy, non possessive warmth and a capacity to respond to a range of possibilities. -- A willingness to work with people of different ethnic groups. -- Acceptance of ethnic differences between people. -- Articulation and clarification of personal values, stereotypes and biases about their own and other's ethnicity and social class and ways these may accommodate or conflict with the needs of others who are ethnically different. -- Personal commitment to change racism and poverty. -- Resolution of feelings about one's choices which have systematically excluded people of color. Knowledge Areas: -- Knowledge of the culture (history, traditions, values, family systems, artistic expressions) of ethnic minorities. -- Knowledge of the impact of class and ethnicity on behavior, attitudes and values. -- Knowledge of helpseeking behaviors of ethnic minorities clients. -- Knowledge of the role of language, speech patterns and communication styles in ethnically distinct communities. -- Knowledge of resources (agencies, persons, informal helping networks, research) that can be utilized. -- Knowledge of power relationships within the community, agency or institution and their impact on ethnic minority clients. Skills: -- Techniques for learning the cultures of minorities. -- Ability to communicate accurate information to minority communities. -- Ability to openly discuss racial and ethnic differences and issues and to respond to culturally based clues. DISABILITY AND CULTURAL DIVERSITY According to the U.S. Census Bureau's 1994-95 data approximately 72.2% of African Americans with disabilities and 51.9% of Hispanics with disabilities are not working. The data further show that 85.5% of African Americans and 75.4% of Hispanics with severe disabilities are not working. Individuals with disabilities who are members of other minority groups are also disproportionately represented among the unemployed. The employment circumstances facing minorities with disabilities are bleak. Attention to this issue must become a priority for the nation. In response to these unacceptably high unemployment statistics for persons with disabilities from culturally diverse backgrounds, the President's Committee on Employment of People with Disabilities has been working with Howard University, the National Association for the Advancement of Colored People, the National Urban League, ASPIRA and other minority organizations in an effort to respond to this challenge. It will take the efforts of many organizations and employers to reverse the negative employment picture for minorities with disabilities. FACTORS THAT CONTRIBUTE TO HIGH UNEMPLOYMENT Here are some factors that help to perpetuate the high unemployment rates of persons with disabilities from culturally diverse backgrounds: · People with disabilities from culturally diverse backgrounds experience twice the discrimination experienced by non-disabled people in the minority community. Both disability and race complicate the situation. · There is disparity in rehabilitation services provided to minority persons with disabilities. · Educational opportunities are less available and affordable to individuals with disabilities from culturally diverse backgrounds. · Inadequate transportation and housing in disadvantaged communities intensify the employment barriers for minority people with disabilities. · There is a lack of mentors and role models for minority individuals with disabilities in the workplace. · Mainstream job coaching, on the job training and internships are often not readily available to minority individuals with disabilities. · Both mainstream and minority communities and religious organizations tend to overlook their capability to support the employment of minority individuals with disabilities. · Cultural differences are not clearly understood by individuals or organizations designing programs to support the employment of minority persons with disabilities. ACTIONS THAT CAN HELP IMPROVE THE EMPLOYMENT PICTURE Here are some actions that businesses and organizations can take to help reduce the level of unemployment of individuals with disabilities from culturally diverse backgrounds: · Learn More. Focus on public awareness by learning more about minority disability issues. · Change Attitudes. Conduct sensitivity training and awareness sessions for staff. · Reach Out. Involve minority persons with disabilities in organizational programs. · Make a Commitment. Designate an organization official to serve as a disability specialist. · Help Tell the Story. Publicize stories about this issue, whenever possible, in company and organization newsletters, newspapers and magazines. Focus on minority individuals with disabilities who are working successfully. · Educate. Help improve employment opportunities for minority persons by addressing this problem at all minority-related conferences and other events. · Furnish Role Models. Identify role models and mentors for minority persons with disabilities. · Recruit Wisely. Utilize local recruiting sources such as area minority organizations, religious institutions and disability related organizations to identify qualified job applicants with disabilities from culturally diverse backgrounds. · Advance Training. Include minority persons with disabilities in job training and upward-mobility training programs. · Provide Employment Opportunities. Develop targeted internships and job programs for minority persons with disabilities. Resources · President's Committee on Employment of People with Disabilities' Cultural Diversity Initiative (202) 376-6200 (V), (202) 376-6205 (TDD), (202) 376-6219 (Fax) · Howard University Research and Training Center 2900 Van Ness Street, NW, Washington, DC 20008 (202) 806-8086 (V), (202) 224-7628 (TDD), (202) 806-8148 (Fax) July 1998 President's Committee on Employment of People with Disabilities 1331 F Street, NW, Washington, DC 20004-1107 http://www.pcepd.gov The Leadership Responsibilities of People of Color With Impairments in the 21st Century Barbara Hardaway, Ph.D. Associate Professor Gallaudet University Abstract This article discusses the challenges which non-White professionals face in their attempts to attain leadership status. A major task for this group is to lower barriers to full professional development within the workplace. Frequently, these barriers consist of hostile attitudes and behaviors on the part of seasoned professionals which hinder the attainment of full potential by minority persons. The paper suggests strategies which non-white professionals with disabilities may use to achieve their professional goals and leadership potential. Introduction Initially, I had been asked to present a paper which would basically outline ways in which one might prepare professionals of color with impairments for leadership in the next century. Immediately I considered the task to be misdirected for our discussion here today, in so far as I have always known people of color and individuals with impairments in leadership roles in this country. I am hopeful that the recent legislation for persons with impairments will allow for an increase in professional opportunities and economic empowerment. However, my optimism is somewhat tempered by the enormous challenges facing all of us in this century. In light of the fact that America has become more culturally and racially diverse, non-white professionals will have a greater responsibility in their role in providing culturally relevant services. This type of professional often enters settings that have addressed technological and environmental barriers without having devoted the necessary time and attention to the human barriers. Our fundamental task should be that of preparing the workplace and institutions to receive this type of professional with dignity and human respect. More often than not, businesses and institutions tend to view communication training as unnecessary for sensitizing employees for this on-going process. Training tends to consist of explaining the "Americans with Disabilities Act" and defining "reasonable accommodations" for persons with impairments and how the Act impacts upon one's life. Reserved parking spaces are designated and ramps built, yet co-workers are not schooled on various medical conditions and communication techniques used to solicit information respectfully when they have questions and concerns. Non-White professionals with impairments are expected to teach, handle, and address everyday interpersonal conflicts of colleagues while defending their self-esteem and worth from the assaults of ignorance, fear, and avoidant behaviors. As we approach the 21st century, people with impairment conditions, in ever increasing numbers, will become role models for us all. Communities that previously practiced overt discrimination, must work through anxieties that necessitate their need to create "outcast" groups of people with impairments. Legislation has been passed stating that "these people" are your equals. The Americans with Disabilities Act is a catalyst for positive social change and the beginning of a very difficult and painful process for many. If handled properly, this civil rights ruling will benefit the entire country. Professionals, role-models, and leaders with impairments have a critical role in this process. However, we must all be in support of changing community attitudes, so that people of color with impairments can celebrate their self-worth, and receiving communities can reap the benefits of their contributions. In closing, I cannot stress enough the task before us and the importance of having professionals with impairments being an integral part of the process. Unfortunately, receiving communities remain emotionally and attitudinally ill- prepared to accept many leaders and professionals with impairments. This reality became painfully apparent to the public when Magic Johnson announced that several players refused to play basketball with him despite his professional history, talents, and abilities as an athlete. They were afraid of becoming infected when there was community support for Magic Johnson's decision to play again. Magic, therefore, decided to withdraw from the challenge. However, there are others who will not. There will continue to be similar confrontations at the workplace, regardless of the type of impairment conditions, unless we all stand vigil in protection of our human rights, and unless we all learn appropriate interpersonal skills, while elevating our knowledge base as informed citizens in this country. I leave you with the recommendation that communication training of employees be implemented with equal fervor as your environmental and technological considerations. Companies and institutions across this country are preparing their workforce for multicultural diversity in the 21st Century. Non-white professionals with impairments are part of the plurality and deserve your diligence in the area of communication sensitivity if any of us is to benefit from America's gesture of people empowerment. Building Networks in the Latino Community: A Mechanism for Empowerment Lucy Wong-Hernandez San Jose State University Foundation Abstract The Hispanic population has been long overlooked in regard to issues related to education, rehabilitation and social services. In addition, sufficient research efforts have not been made to study this population in reference to disability and rehabilitation services. The absence of networking, collaboration, and communication has further hindered the attempt to provide service to improve the implementation of programs for the Hispanic population. Recommendations are presented to build an active Network System to address this issue. Historical Perspective of the Hispanic population As our nation reorganizes and changes its path and its views towards society, we hear more and more about minority issues and their direct relationship to today's societal problems. A group that is always mentioned regarding societal problems is the Hispanic population. For most Americans, the mentioning of Hispanics as a minority group implies the birth of a new subgroup in our society or a group of newcomers, recently arriving in this country, and bringing with them their cultural flavor and conflicts. In fact, history tells us otherwise. The Hispanic population has been very much a part of the American society since the historical days of the formation of this country. They were the native settlers of most of the Southern part of this country. Today, we find large groups of Hispanics in many geographical areas of this country; from the agricultural fields to our most cosmopolitan cities. They come from very diversified countries in Central and South America and the Caribbean. These groups bring their own cultural characteristics, values, and beliefs; and their strongest bond is their native Spanish language. During the past decades, persons of Hispanic origin have continued to arrive in the United States. The influx of this rich and colorful culture, mixed with native Hispanic Americans, is one of the most significant factors that contributes to this country's demographic changes. There is an abundance of literature which reports the reasons for mass migration of Hispanics to this country. It appears to me that the reasons are very obvious: sometimes political reasons and, most of the time, economic reasons. The reality is that the majority of this population is here to stay and it constitutes an integral part of the American society. The Hispanic population is the youngest group in our society, with an average age of 22 compared to 35 for non-Hispanics. Hispanics also maintain a higher birth rate than any other group. At present, they are the second largest minority group in the United States. Due to its rapid growth, this population has the inevitable potential to become the largest ethnic group in this country within the next ten to fifteen years. The cultural aspects that differentiate this group from other ethnic groups are numerous. Just like any other immigrant group, Hispanics hope for the "American Dream." However, because of a number of barriers, unknown to many of them on their arrival in this country, a great number fail to enjoy the equality of opportunities that this great country has to offer. Historically, it appears that Hispanics continue to be culturally misunderstood, are negatively stereotyped, and very much underserved and under-represented at all levels of the American society. As a group, they have less education, less skill training, and most often, hold non- skilled jobs. From the migrant working fields to the political arenas of our largest cities, the lack of leadership is quite obvious, considering the large percentage of the total population represented by the Hispanic population in this country. Current Issues Affecting the Hispanic Population Hispanics have the same problems as other minority groups and they are affected by the same issues affecting the general population in this country today. In addition, they have their own internal conflicts with other groups, coupled with the deterioration of family and societal values. Large numbers of Hispanics live below the poverty level, have lower educational achievement, and many are school dropouts. One way of becoming aware of the seriousness of a current problem affecting the Hispanic population is by looking at the nation's school system records. We will find, as recently confirmed by the Secretary of Education, Mr. Lamar Alexander, that the high school dropout rate among Hispanics is 33.5% This constitutes the highest in the nation, and higher than any other ethnic group. Moreover, an alarming number of Hispanic students are trapped in the web of the Special Education system in which they are frequently intellectually misdiagnosed. A reason which might account for this serious problem is the of lack of professional training and sensitivity in reference to intervention and multicultural issues. Should this serious situation continue to be overlooked, the underrepresentation of Hispanics in the professional world and the absence of role models will be perpetuated for years to come. While looking at the present situation, questions arise such as: What is happening in the Hispanic population? Where is the safety network or community support to rescue these youngsters and prevent their further alienation from society? How can we assist them and their families with the necessary support to improve their quality of life? Perhaps, we will find the answers to these questions from future research activities and by building and creating a productive and active network system to work with the Hispanic community. Research on Hispanic Disability Issues The Hispanic population in the United States has an increasing number of disability statistics. It is estimated that two out of ten Hispanics have a disability, and most often the individual with a disability is of school and working age. Studies show that the rehabilitation outcome for those who participate in rehabilitation and vocational training programs is less successful than for any other ethnic group. Employment, vocational training, health status, and the utilization of rehabilitation services are at a disadvantage for this segment of the population. Limited studies and no substantiated research activities have been conducted to investigate the prevalence of disability issues regarding this population. Therefore, there is a lack of direction on how to successfully integrate Hispanics with disabilities into the nation's education and rehabilitation programs. Research activities for designing, implementing, and evaluating the rehabilitation process for improving outcomes for the Hispanic disability community have been addressed only superficially, and the evidence and data obtained is not being fully utilized. Networking with the Hispanic Population It is important to build a network system with an aggressive outreach program to provide information to Hispanic families in reference to programs and opportunities available to them in the community. In order for these programs to be successful in reaching their objectives, and to avoid language barriers, agencies must make a concerted effort to integrate bilingual professionals into their staff. Rehabilitation professionals and service providers are in need of training to enhance their counseling techniques and their effectiveness in working with clients from multicultural groups. It is important to be in touch with the norms and cultural values of the population being served. In order to improve network communication, a model of Micro-Networks, among Hispanic organized groups already in existence, must be established and strengthened. These groups could be found in local churches and civil organizations as well as through civil group leaders, business owners, and other merchant organizations organized under the Hispanic Chamber of Commerce. A Macro-Network model is also needed in order to extend the necessary support system and network between Hispanic organized groups and other ethnic group organizations. This model will create a "safety net" by working together, sharing experiences and information; and would serve as a liaison between different groups. The outcome of this collaboration will benefit all minority groups and empower them to achieve a more productive life. When we talk about networks, vocational programs, training, rehabilitation, etc., we tend to think of funding sources to implement these services. But in reality, it is not so much the need for new programs to provide information and services to Hispanics that is needed; rather, the incorporation of new ideas to old programs. By building an organized network system in our communities, more comprehensive services would reach this population with the necessary elements to accomplish the task. In this case, these elements are the knowledge and understanding of the Hispanic culture and language, and a genuine commitment to provide quality services that will ensure successful rehabilitation outcomes. The Building Networks approach will provide us with program development and linkages with people and agencies with a common cause or goal. A strong network system will fill the gaps that the system has overlooked for a long time. The following recommendations presented here for Building Networks in the Hispanic Community are simple and basic. There is a need to develop a system which includes the following: I. Micro-Networks Model · Hispanic organized groups working together. Creating outreach groups to bring the Hispanic cultural diversity under one umbrella. This approach will allow the diverse members of the Hispanic community to learn from each other and to become aware that their needs and there goals might be similar. II. Macro-Networks Model · Exploring and establishing a working relationship with organizations already in existence outside the Hispanic community. This action will sensitize other minority groups and professionals in general about the issues and cultural differences that sometimes become a barrier for the Hispanic population. This is an opportunity for learning and sharing. III. Communication · Open and clear communication is essential when dealing with sensitive and diverse issues. If communication presents a barrier, the effort to network will be useless. Effective communication is the only way that we learn from each other; and most importantly, it is how we set our lines of expectations and goals. IV. Role Models · The role model approach for networking is very valuable. Collaborating with Hispanic individuals that are/or have been recipients of services and have achieved their goals successfully, can serve as a source of inspiration to others. This approach highlights the idea that opportunities are available to those who work hard and can be reached by every one. In sum, building an active and strong network system is probably the key approach for effective implementation of social services programs. This action will benefit the entire society. The network system can provide us with a fountain of information and knowledge. We must not repeat the history of apathy and indifference towards multicultural issues. Rather, we must try to enhance our service delivery system with more collaboration through networking and reaching out to embrace the diverse groups that form our society. This country has made tremendous progress in enhancing its rehabilitation programs and removing barriers to productivity for the disability community. We now have the Americans with Disabilities Act, our greatest accomplishment, not only because it protects all persons with disabilities from further discrimination when attempting to join the country's labor force, but more importantly, because it prepares our society to embrace what has been regarded as "different" for so many years. Outreach Services For American Indians Priscilla R. Sanderson Director American Indian Rehabilitation Research and Training Center Northern Arizona University Abstract This paper rejects the "myth" that American Indians and Alaska Natives constitute a homogeneous class, i.e. one showing no internal cultural diversity. The author's term "designing" of services means playing a leadership role in the formulation of services to be offered. Extremely important in outreach services for any given minority group is contact with individuals and understanding cultural practices of the specific minority group. Measures tending to foster understanding and productive contact include: attending pow wows; vigilance in regard to one's dress; knowledge of the various American Indian sovereign groups, and of the highly particular role played by a person's entire family. In developing the key ability of the counselors, which is being highly sensitive to cultural differences, the counselor must appreciate the frequently demonstrated ability of the consumer to be the counselors mentor. Introduction The mission of the American Indian Rehabilitation Research and Training Center (AIRRTC), located at Northern Arizona University, is to improve the quality of life for American Indians with disabilities through the conduct of research and training that will result in culturally appropriate and responsive rehabilitation services and increase the participation of American Indians in the design and delivery of services. Providing outreach service for American Indians and Alaska Natives with disabilities is a challenge to service providers and requires time, energy, and patience in developing rapport with the "Indian Community" resources. The American Indians and Alaska Natives do not represent a homogeneous group. This group comprises less than 1% of the total population in the country, yet they have as much diversity as the remaining 99% (Hodgkinson, Outtz, and Obarakpor, 1990). There are over 309 federally recognized tribes and 197 Alaska Native villages. There are also over 250 different languages still spoken today by the Native people. The 1990 Census reported that over 240,000 American Indians, Eskimos, or Aleuts resided in California. The majority of this group reside in urban areas, while others reside in reservations and rancherias. Today many of the tribes, unrecognized by the federal government, are in the process of petitioning the Interior Department for formal federal recognition as a tribe. Such recognition is critical to their economic and cultural survival because only recognized tribes are entitled to participate in federal housing, health, and education programs and to maintain their rightful government-to-government relationship with the Federal government in Washington (Echohawk, LA Times, 1990). Providing outreach services for American Indians involves learning about the people you serve, including; their history, culture, customs, and tribal politics. Rehabilitation counselors and service providers who provide services to American Indians with disabilities must be aware that it is advantageous to seek approval from the tribal government prior to entering their reservations or rancherias. This can be done in a number of ways including the following: · Appoint a contact person in the reservation or rancheria who works with you to assist you in developing a rapport with the tribal government. · Write a letter explaining to the tribal government why you want to visit their community, and follow it up with a telephone call. · Involve the consumer or their family members, if they came to you for services. Many urban areas have an American Indian center or an inter-tribal council which can be considered by the native people as a gateway to services and a way to get involved in the "Indian Community" affairs. It can benefit the rehabilitation counselors or service providers to visit the Indian Center and find out what types of services are offered. Developing rapport with the staff of the Indian Center can open doors to linking up and sharing services or resources. The service provider who involves herself/himself in the Indian community by attending pow-wows, craft shows, fund raising, and any other Indian sponsored activity will find himself/herself gaining rapport with the Indian community. It is during these activities and events, usually consisting of intertribal gatherings, that the service provider will notice the pride of the Indian heritage that the native people possess. Food! Historically food is an important aspect that surrounds events: whether to celebrate, to attend tribal meetings, funerals, or tribal elections. The service provider who wishes to meet with community members to disseminate information on their organization should plan on providing a pot-luck or snacks. Another resource is linking up with the local native community health representative (CHR). The CHR can be considered a referral source and a person who can help you provide assistance to the consumer to increase or maintain his/her independent living or employment goals. The service provider who goes into the reservation or rancheria must be aware that wearing a suit and tie, or being dressed up may be a barrier to some native people. This may be because they associate formal clothing (suits, ties, or women's business outfits) with a history of government paternalism. Ask a community member about the best way to dress, if you are not sure. Similarly, declaring your credentials, such as a rehabilitation counselor with a master's degree and/or counselor rehabilitation certification (CRC), is not going to assist you in gaining rapport. It takes time for the Indian community to have confidence in you and to witness your sincerity. The American Indian consumer usually relies on family members to assist in fulfilling his responsibilities during the rehabilitation process. It is important for the service provider to be sure that the consumer and the consumer's family fully understands why you are providing outreach services. The service provider can involve the family members in identifying resources in their community. The service provider needs to ensure that the identified resource is sensitive to cultural differences and that the identified resource agency continues to involve the family in the rehabilitation process. While exploring outreach services for the American Indians, the service provider must ensure that transportation is available and readily accessible for the consumer. The AIRRTC has conducted research projects on community consumer concerns in Denver (Marshall, Johnson, Martin, Saravanabhavan, 1991), Minneapolis-St. Paul (Marshall, Day-Davilla, Mackin, 1992), and Dallas-Ft. Worth (Schacht, Hickman, Klibaner, 1993). One of the important findings revealed that transportation in the metropolitan areas is one of the barriers to successful rehabilitation encountered by the American Indians with disabilities. Thus, the service providers should not assume that transportation is readily available to the consumer and should ensure that the bus system route and hours are compatible. Family or even extended family can be a good resource in assisting with transportation. Thomason (1991) pointed out: "All counselors should have a basic understanding of the history and present status of American Indians and should be able to serve members of this group. Although the American Indians are diverse and no one can be knowledgeable about all tribes, there are some similarities in the basic values and beliefs of many American Indians." (p. 326) Outreach services for American Indians include networking with the tribal, state, and federal agencies, organizations, and schools. The challenge is that of ensuring that these resources will treat your consumer as a person first, who can also be your teacher and also be sensitive to cultural differences. Becoming sensitive to cultural differences can be the seed to becoming culturally sensitive. Developing culturally sensitive strategies in implementing outreach services for American Indians and re-examining the strategies is a priority that all vocational rehabilitation agencies and other service providers to American Indians with disabilities need to follow. References Echohawk, J.E. (1990, March 12). The first Californians are still last. Los Angeles Times, p. 5. Hodgkinson, H.L., Outz, J.H., Obarakpor, A.M. (1990) The Demographics of American Indians: One percent of the people fifty percent of the diversity. Institute for . . Education Leadership, Inc. Center for Demographic Policy. Marshall, C.A., Day-Davila, C.A., & Mackin, D.E. (1992). The replication of a model for determining community-based needs of American Indians with disabilities through consumer involvement in community planning and change: Minneapolis - St. Paul, Minnesota. Final Report: Phase I. Flagstaff: Northern Arizona University, American Indian Rehabilitation Research and Training Center. Marshall, C.A., Johnson, M.J., Martin, W.E., Jr., & Saravanbhavan, R.C. (1990). The assessment of a model for determining community-based needs of American Indians with disabilities through consumer involvement in community planning and change: Final Report: Phase I. (Rev. Ed.). Flagstaff: Northern Arizona University, American Indian Rehabilitation Research and Training Center. Schacht, R.M., Hichman, R., & Klibaner, A. (1993). Needs assessment of American Indians with disabilities in the Dallas-Fort Worth metroplex. Preliminary Report, Phase I. Flagstaff: Northern Arizona University, American Indian Rehabilitation Research and Training Center. Thomason, T.C. (1991). Counseling Native Americans: An introduction for non-Native American counselors. Journal of Counseling and Development, 69, 321-327. Rehabilitation Counseling For Asian Americans: Psychological and Social Considerations George K. Hong, Ph.D. Associate Professor/Clinical Psychologist California State University, Los Angeles Abstract This paper examines the psychological needs and the social environment of Asian American consumers. Factors considered include: the diversity and commonalties among different Asian American groups, concrete services versus psychological counseling, individuals versus family focus, and the obstacles to rehabilitation encountered in the social environment. Implications of these issues for culturally sensitive rehabilitation services are discussed. Introduction In order to provide effective services, rehabilitation counselors have to be aware of the psychological needs of their consumers and the social environment in which consumers live. These are crucial factors that should be taken into consideration in developing a working relationship with the consumer, as well as in realistic service planning. This paper aims to familiarize counselors with these two aspects of the Asian American populations so that culturally sensitive services can be designed. Diversity & Commonalties Among Asian Americans In the mass media as well as in the professional literature, Asian Americans are often presented as a homogeneous group. In reality, Asian Americans come from different countries in Asia which have different languages and cultures. They also have different histories of migration to the United States. A first generation Korean American and a Sansei, i.e., third generation Japanese American, will have different degrees of identification with mainstream American culture and their cultures of origin. A Chinese American coming from the rural parts of mainland China will be embracing a form of Chinese culture different from that of one coming from the cosmopolitan centers such as Hong Kong. All four of the above will have migration experiences that are in sharp contrast to Vietnamese Americans who came as refugees, and whose trauma from war and turmoil will likely have a lasting influence on their experience in the United States. Thus, in providing rehabilitation to Americans, it is important for the counselor to be sensitive to the differences among groups of Asian Americans. One should also keep in mind that every consumer is an individual whose degree of identification with his or her ethnic culture and with mainstream American culture might be different from others in the same ethnic group. Stereotyping, even when it is based on benign intentions, will lead to misunderstanding, frustration, and eventually hurt feelings for both the consumer and the counselor. Given the diversity among Asian Americans, it is difficult for a counselor to learn the details about every group. So I will focus on the general characteristics shared by many of them. Many Asian cultures, namely Chinese, Japanese, Korean, and Vietnamese, share common world views which are based on the "Eastern" philosophies such as Confucianism, Taoism, and Buddhism, in contrast to mainstream American or western culture which is based on the Judeo-Christian orientation. Many discussions are focused on these Asian American populations. As noted by many authors, (Hong, 1988, 1993; Lee, 1979; Shon, 1979; Sue & Morishima, 1982; Wong, 1985) they can be considered as a group with shared cultural characteristics which warrant counseling techniques and service delivery models that are different from those designed for the mainstream population. Concrete Services Versus Counseling In order to provide effective rehabilitation counseling, a counselor often has to go beyond medical or concrete services to address the psychological needs of the consumer. For example, one cannot provide successful job training or placement until the consumer has the motivation and the emotional strength to go through with it. Issues relating to the loss of an ability, etc., are all to be addressed in the course of providing rehabilitation services. When Asian Americans seek counseling, they often expect a quick resolution of their problems, such as trouble-shooting an issue, direct advice, or concrete services (Hong, 1988, 1993; Sue & Morishima, 1982). They are not familiar with the "emotional/psychological" type of counseling. In addition, Asian Americans have the tendency to somatize, or complain about physical discomforts such as poor appetite, insomnia, headaches, or other "pains," etc., when they experience emotional difficulties (Hong, 1993). In working with Asian Americans, rehabilitation counselors should be careful not to be misguided into focusing solely on medical and concrete services for Asian Americans and neglect their psychological and emotional needs. Similarly, one has to be sensitive to the consumer's interest in the "non- psychological" aspect of a disability. A good approach to this dilemma is to engage consumers by starting from the medical or concrete aspects of the disability, and gradually lead them to explore their feelings. The emotional issues can then be addressed in the context of how the psychological well-being might impact on the progress of one's rehabilitation. Family Versus The Individual Asian cultures are focused on the family as opposed to mainstream American culture which is focused on the individual (Hong, 1988; Shon & Ja, 1982; Sue & Morishima, 1982). In working with an Asian American consumer, it is important to take the family into consideration. When making a service plan, the rehabilitation counselor has to examine the impact of a disability on the individual consumer as well as on the whole family. For example, a vast majority of Asian Americans are immigrants and establishing economic security is a major concern for them. Therefore, the following questions should be considered by service providers: To what extent does the disability of a family member affect the family's collective goals? How does one address the guilt experienced by a consumer for being an additional burden on the family members? How does one help the Asian family locate culturally congruent resources? Given the importance of the family, the rehabilitation counselor has to be careful to include relevant family members in the decision making process. At times, this might include extended family members, such as uncles or cousins (if they are in the United States). When a service planning meeting is held, it is useful to let the consumer know in advance that all concerned family members are invited to the meeting. If the counselor limits participation to the consumer and a significant other, the plan will often need to be re-negotiated because other members of the family have different ideas. Giving an open invitation to all will facilitate the process and enhance consumer cooperation. Social Considerations Cultural sensitivity on the part of the rehabilitation counselor by itself is often insufficient for effective services. The cooperation of other people in the public or private sector is essential. As such, Asian American consumers face a double jeopardy. They face discrimination as an ethnic minority individually, and they face discrimination as persons with disabilities (Broadwin, Hong, & Soriano, 1992; Cook, 1992; Fine & Asch, 1988). This is especially true for those of lower socioeconomic background or those living in the ethnic communities. They are typically less integrated into mainstream America than the middle and upper classes. Many are not fluent in English. Where can the counselor find appropriate job training for them? Are firms and agencies in mainstream settings willing to hire them? Will their potential colleagues accept them socially? Take for example a Chinese American consumer who, for most of his adult life, had been working as a cook in a Chinese restaurant. Due to a car accident, he suffered a permanent disability and could not perform work requiring physical labor. He could not sit or stand too long without incurring pain in his hips. The restaurant business became too strenuous for him. Being in his late forties, what employment opportunities did he have? He was denied disability benefits because the welfare caseworker indicated that he could work as a telephone operator, and there were corporations willing to hire people with disabilities for that position. What the caseworker did not consider was that this consumer had limited English fluency! The caseworker also said that he could be a cashier. Again, which place would hire a person in his forties who was not fluent in English and who needed frequent breaks as he could not stand or sit in the same position too long? What sounded good on paper for the "average" Anglo American consumer was simply not feasible for this consumer. Sure, having the consumer enrolled in adult English classes could be part of the rehabilitation plan. But this meant that the consumer would require a longer time for job training than the bureaucratic "formula" for rehabilitation allowed. Considering the limited training and employment available to ethnic and linguistic persons from minority groups such as Asians, the rehabilitation counselor has to be especially resourceful and persistent. Very often, he has to be the advocate for his consumers, arguing their cases before government agencies, and locating legal assistance when needed. He also must serve as the liaison between different agencies, such as medical services, job training, and welfare services, to ensure that the consumer will not get lost in the shuffle between them. This is especially important for many Asian immigrants who are unfamiliar with the institutional system in this country (Hong, 1993; Shon, 1979; Sue & Morishima, 1982). Finding their way among the myriad of providers is a confusing and frustrating experience. In order to perform the above functions, it is useful for rehabilitation counselors working with Asian Americans to network with community agencies and other culturally sensitive providers in allied professions (Chan, 1986). When a referral is needed, they can use their contacts to locate appropriate services for their consumers, and if necessary, to advocate for their consumers. In addition to working on individual cases, rehabilitation counselors should use their professional knowledge and status to identify the inadequacies and insensitivities currently present in both public and private agencies. They need to work together with other community groups to promote institutional change so that cultural services will be more easily accessible than at the present time. Concluding Remarks This paper has focused on the major psychological and social issues commonly experienced by Asian American consumers. It is not a comprehensive list of all of the problems. In working with a consumer from a particular ethnic group, it is important for the rehabilitation counselor to apply the suggestions advanced here selectively. Group characteristics can serve as guidelines, but indiscriminate applications will lead to over-generalization and stereotyping. The counselor should remember that, first of all, the consumer is an individual with his or her own unique circumstances, personal experiences, and needs. It is only with such attitudes that truly culturally sensitive services can be achieved. References Brodwin, M.G., Hong, G.K., & Sorian, M (1992). Discrimination, disability, and cultural considerations: Implications for counselors. California Association of Counseling and Development Journal, 12, 9-14. Chan, S. (1986). Parents of exceptional Asian children. In M.K. Kitano & P.C. Chinn (Eds.) Exceptional Asian children and youth (pp.36-53). Reston, VA: Council for Exceptional Children. Cook, D. (1992). Psychological impact of disability. In R.M. Parker & E.M. Szmanski (Eds.), Rehabilitation counseling: Basics and beyond (pp.249-272). Austin, TX: Pro-ed. Fine, M. & Asch, A. (1988). Disabilities beyond stigma: Social interaction, discrimination, and activism. Journal of Social Issues, 44, 3-21. Hong, G.K. (1988). A general family practitioner approach for Asian American mental health services. Professional Psychology: Research and Practice, 19, 600- 605. Hong, G.K. (1993). Contextual factors in psychotherapy with Asian Americans. In J.L. Chin, J.H. Liem, M.D. Ham, & G.K. Hong, Transference and empathy in Asian American psychotherapy: Cultural values and treatment needs. (pp. 3-13). Westport, CT: Praeger. Lee, E. (1979, May). Mental health services for Asian Americans: Problems and alternatives. In Civil rights issues of Asian and Pacific Americans: Myths and realities. A consultation sponsored by the U.S. Commission on Civil Rights. (pp. 734-756) (GPO: 1980 624- 865/1772). Washington, DC: Government Printing Office. Shon, S.P. (1979, May). The delivery of mental health services to Asian Americans. In Civil rights issues of Asian and Pacific Americans: Myths and realities. A consultation sponsored by the U.S. Commission on Civil Rights (pp.724-733) (GPO: 1980 624-865/1772). Washington, DC: Government Printing Office. Shon, S.P., & Ja, D.Y. (1982). Asian families. In M. McGoldrick, J.K. Pearce, & J. Giordano (Eds.), Ethnicity and family therapy (pp. 208-228). New York: The Guilford Press. Sue, S., & Morishima, J.K. (1982). The mental health of Asian Americans. San Francisco: Jossey-Bass, Inc. Wong, H.Z. (1985). Training for mental health services providers to Southeast Asian refugees: Models, strategies, and curricula. In T.C. Owan (Ed.), Southeast Asian mental health: Treatment, prevention, services and research (pp.345- 390) (DHSS Publication No. ADM 85-1399). Washington, DC: National Institute of Mental Health Problems of Providing Services to Persons with Disabilities from Minority Groups Carl Douthitt, M.A. Graduate Research Assistant Howard University Research and Training Center Abstract This paper presents a number of problems that need to be addressed in order to successfully provide rehabilitation services to minority persons with disabilities. Negative perceptions and attitudes of people without disabilities are identified as major barriers to the provision of these services. Discussion of issues such as cultural sensitivity, group distinctions, changing demographics, and labor force highlights the difficulties of the service delivery system that is oriented to ethics of the majority culture. Introduction From what I understand, when a person is asked to speak to a group there are certain obligations or responsibilities that one must adhere to. It seems that one of the first obligations is to tell some kind of joke or story and so, I would like to fulfill that first obligation by telling a story. There was a man who was driving along a seldomly traveled, hilly, rural road. As he got to the top of one of the hills he got a flat tire. So, he got out of the car and proceeded about the task of changing the tire. He took off the five (5) nuts and placed them down beside him. As he was putting on the spare, he accidentally kicked three of the five nuts down into a gully. " Well," he thinks. "What in the world am I going to do now?" He looks across the road and he notices this BIG facility, with this BIG gate and this big sign on the gate that reads, "Maple Wood Psychiatric Facility." Peering from behind the gate is this middle aged gentleman who looks as though he's been standing there for some time. The guy with the flat tire walks over to the gate rather hesitantly and he asks the gentleman on the other side, "Hey buddy, is there a phone around here? I got a flat tire and as I was changing it I accidentally knocked some of the nuts into the gully over there. I want to call to get some assistance." The guy on the other side of the gate said, "Yeah, there is a phone, but it's way over on the other side of the facility. I have a suggestion for you. Why don't you take one nut from each of the other three tires and put them on the tire that's missing nuts? That should hold you until you're able to get to a gas station." The guy with the flat tire proceeded to follow the suggestion and sure enough the tire was secure enough for the car to be driven. As he was about to drive off, the guy in the car hollered over at the guy behind the gate and in a very condescending manner said, "Hey buddy, if you're so smart, how come you're on the other side of that gate?" The guy behind the gate peered at the guy in the car for a few moments and then he responded, "You know, I may have a mental illness, but I'm not stupid!" This story depicts the kind of negative attitudes that many people without disabilities have towards those with disabilities. A person with a disability is often seen as being UNFIT, UNABLE, and in essence DEVALUED in the mind of the person without a disability. This kind of devaluation becomes compounded when the person with a disability is also a member of a minority group. In a sense there becomes a kind of dual devaluation. One is devalued because of the disability, and also devalued because of the minority status. This dual devaluation flies in the face of the concept of the "melting pot." That is, the notion that group distinctions between people are unimportant. It does not appear that we have melted entirely. Racism, sexism, and abilism are just a few of the barriers that have prevented many from realizing the American Dream. These barriers must be broken down! They must be broken down because the demographics of this country are changing! Between the years 1980 and 1990, the Anglo American population has decreased in the United States by 2.8%. However, within this ten year period, the African American population has increased by .4%, the Latin American population by 2.6%, and the Asian American population by 1.4%. If these trends continue, by the year 2000 it is estimated that the Asian American population will increase approximately 21%, African Americans will increase about 12%, and Anglo Americans will increase approximately 2%. With this type of change estimated within the country's population, it is evident that there are going to be various effects. Probably one of the primary effects will be in the labor force. According to the U.S. Bureau of the Census, it is projected that between 1988 and the year 2000, immigrant females along with native white males will comprise approximately 9% of the labor force, respectively. Immigrant males will make up 12% of the labor force followed by native minority females and native minority males both at approximately 21%. It is estimated that native white females will comprise the bulk of the country's labor force totaling approximately 29%. The challenge that is presented by this change in the labor force is to maximize and utilize the abilities of persons from minority groups, particularly minority persons with disabilities. Unfortunately, presently it appears that this challenge is not being met. African Americans account for approximately 22% of the unemployed persons with disabilities. For working-age Latin Americans with a disability, approximately 76.8% are out of the labor force, and if they are out of the labor force we are definitely not maximizing their abilities! With regard to participation in the rehabilitation process, there are many inequalities that exist for minority consumers. There are large percentages of African Americans nationwide who are not being accepted for services. When they are accepted, they are less likely to be rehabilitated. It is estimated that as high as 50% of Asian American and Pacific Islanders who participate in public vocational rehabilitation programs are terminated prematurely. Similar concerns exist for Latin Americans and Native Americans. One of the primary reason for these inequalities is the cultural insensitivity that seems to exist among many service providers toward consumers who are of a different cultural background. The service delivery system has traditionally been oriented towards the ethics of the majority culture, which espouses individuality, control of one's environment, and a value of the future. When a person, who seeks services is of a cultural background that values group behavior rather than individuality, harmony with the environment rather than control over it, and a value of the past or present rather than the future, it becomes apparent how this individual might experience problems seeking services within a system that has values almost totally opposite his own. One way of dealing with this disparity is for the representatives of the system, on all levels, from top to bottom and from bottom to top, to become more culturally knowledgeable and culturally sensitive. There are many service providers who see cultural background as being superficial or irrelevant to the rehabilitation process. One reason this may occur is the fact that many of us have gone through practically our entire educational and professional careers without having a word mentioned about "cultural diversity." Therefore, it is not difficult to understand why some individuals do not appreciate the role of cultural diversity in the rehabilitation process. By not giving attention to, or having some degree of understanding of cultural differences, it becomes very difficult to provide the most appropriate level of services to consumers who may be of a different background. It is not to suggest that one needs to know everything there is to know about all cultures - that would be impossible. However, we do need to develop some understanding about the major values and belief systems of the people we service, especially those who may come from different cultural backgrounds. For example, it is important to know that the extended family is held in high regard within the Asian American culture, that there exists respect for authority, and for an orientation toward the past and toward privacy. In the African American culture, respect for the individual is valued. Traditionally, there has been a distrust of big institutions, and there is an orientation toward the present rather than the past or future. In addition, the extended family has traditionally been deemed as a valued asset within the African American culture. In the Latino culture, there is a strong work ethic, orientation toward the present, and the high value placed on the extended family. The few cultural tendencies that are mentioned here will vary based upon socioeconomic status, region of residence, etc. It is important, however, to have at least a basic knowledge and understanding of cultural diversity when providing services to individuals from these cultures. In the cultures that are cited above, it is noted that the family served as a source of support in all three. Traditionally, the field of rehabilitation has focused on the consumer's treatment, with not much attention being placed on the involvement of the family. However, we are now beginning to see the importance of actively involving the family in the rehabilitation process. There have been studies which show that the involvement of family members in the rehabilitation process can enhance an individual's adjustment to a disability. Furthermore, family reinforcement or support can be vital to maintaining gains made during rehabilitation. In conclusion, I would like to briefly address one other area of concern. With an increase in minority consumers with disabilities, there should also be an increase in minority service providers at all levels; service providers, administrator, and at levels where decisions are made concerning how services are provided. There is little doubt that changes are necessary for our society to become culturally sensitive and pluralistic. But, I would like to leave you with this Chinese proverb, "The journey of a thousand miles begins with the first step." I think that we have taken the first step with conferences like this one, but there is a need to continue the process. By doing so we will be able to successfully reach the end of the thousand mile journey. Skills Development for Multicultural Rehabilitation Counseling: A Quality Of Life Perspective Leo M. Orange California State University Abstract This article focuses on a discussion of specific strategies usable in promoting the development of leadership capabilities in individuals with disabilities from minority groups. This paper states that rehabilitative success in counseling such persons depends on "the counselors understanding the life factors unique to consumers whose sociocultural experiences are different." Frequently, the general population affixes action-engendering stigmas and stereotypes on entire groups of minority members with disabilities. The author states that professionals also entertain pejorative cultural assumptions about disability. Recommended and discussed in detail in this paper is the Quality of Life (QOL) approach shortly defined as an orientation towards a wellness and holistic outlook addressing both the consumer's individual development and his/her environment in the broad sense of the term. Introduction Counseling ethnic minority persons with disabilities is a topic deserving debate and discussion in the field of counseling. If quality counseling services are to be provided to ethnic minority persons with disabilities, rehabilitation counselors and human service professionals need to examine the issues involved in interacting with this consumer group. As suggested by Herbert and Cheatham (1988), and Kunce and Vales (1984), the success of rehabilitation counseling services to persons from minority groups is dependent upon the counselor's understanding of the life factors unique to consumers whose sociocultural experiences are different. For example, the rehabilitation challenges facing African Americans with disabilities are varied and complex and require counseling approaches that are sensitive to the idiosyncrasies of the African American community. Wright (1988) and Atkins (1986) indicate that human service professionals need to be cognizant of the cultural issues involved in serving minority persons with disabilities. Disability and Minority Status The similarities in stigmas and inequities experienced by persons from minority groups and people with disabilities are numerous. Historically, both groups have been excluded from the mainstream of American life and share an underprivileged status. Walker (1988) gave a brief historical account of societal perception of people with disabilities. Though some societies looked upon individuals with disabilities with "awe" and "reverence," in most societies disabilities have traditionally been associated with negativism. In the most recent past, people with disabilities have been consistently relegated to economic deprivation and dependency. Stigmas associated with the minority status reflect these experiences. Wright (1983) noted that racial minority-group members have always had to deal with non- minority individuals who insist that they "not only know their place but also keep their place, that is to feel and act less fortunate than others." Herbert and Cheatham (1988) stated that either having a disability or being a minority person can present stigmas that pose barriers to full participation in education, employment, and social opportunities. Wright (1983) asserted that an individual is appraised according to the presumed characteristics of the group in which he or she is placed. An example would be that individuals with disabilities are often stereotyped as having suffered a great misfortune, and their lives are consequently disturbed and damaged. Stereotypes also exist for persons from minority groups in the larger society. For example, African Americans are perceived as low achievers, promiscuous, and untrustworthy (Atkins, 1988). Wright (1983) maintained that the impact of these stigmas associated with disabilities or minority status can be so intense and pervasive that it can overpower other positive personal characteristics of the individual which may run counter to these stigmas. Minority persons with disabilities are already aware of the stereotypes and negative attitudes held by the majority of Americans. These observations are significant because they suggest that minority persons with disabilities must learn to cope with what Marshall (1987) called the "double whammy" - racial discrimination and physical impairment. The double bias of being a member of both status groups can manifest itself through extreme prejudice on the part of the non-disabled, non-minority individuals who lack awareness and sensitivity to the combined effects of being a minority person and having a disability. Minority Model The disability experience is described through psychological, sociological, and economic paradigms. More recently, ecological and minority models are advocated as appropriate frameworks for analysis through inclusion of an analysis of the person-in-environment (Fine & Asch, 1988; Hahn, 1987; Liachowitz, 1988). Hahn (1988) proposes that a socio-political (minority model) provides a framework from which to examine the disabling environment rather than examining personal limitations (medical model) or functional limitations (economic model). Fine & Asch (1988) challenge the research and professional community to stop considering the environment as unalterable, and to reconsider common assumptions about the meaning of disability which helps to perpetuate cultural stereotypic responses. Critical cultural assumptions about disability also shape professional thinking and attitudes. These assumptions also reinforce language, social beliefs, and interactions throughout the culture. Common cultural assumptions and their implications are that: · 1. Disability is solely biological and outcomes of social interaction are based on disability as the independent variable. 2. Problems faced by persons with disabilities are a result of the impairment rather than the cultural, legal, economic, social, and environmental contexts. 3. Persons with disabilities are victims of biological injustice rather than social injustice; hence, interventions are directed toward changing individuals' abilities rather than social context. 4. Disability is central to the individual's self-concept, self- definition, social comparison, and reference groups. 5. Disability is synonymous with needing help and social support, reinforcing associations between disability and conditions of helplessness, incompetence, and the perpetual receipt of various forms of assistance (Fine & Asch, 1988). Quality of Life and the Role of Rehabilitation Rehabilitation professionals continue to disagree on what is the primary goal of rehabilitation. Some rehabilitation counselors believe that vocational placement is the final outcome of a successful plan while others promote consumer independence. Atkins (1986) indicated consumers enter a rehabilitation process with a set of beliefs, attitudes, values, and goals; they encounter rehabilitation counselors with their own set of beliefs, attitudes, values, and goals. Undeniably, the interaction between consumer and counselor attributes could be critical in determining whether they leave the program successfully rehabilitated. A Quality of Life (QOL) perspective on rehabilitation counseling integrates competing program goals such as consumer independence or employment into a higher order, multidimensional rehabilitation outcome. Counselors committed to a QOL orientation work from a wellness and holistic position that addresses both the development of the individual and the environment in which the person lives (Roessler, 1990). Livneh (1988) presented a hierarchical and multifaceted definition of QOL. He conceptualized QOL as comprising two domains, namely community and labor force memberships; each of these was subdivided into two parts - physical and psychosocial adjustment. Within physical and psychosocial adjustment, sequential subgoals were further identified down to the level of specific behavioral objectives for a given individual. Hence, to enhance an individual's quality of life, rehabilitation services must target a wide range of body, self, and social objectives. Quality of Life began as a political slogan during the 1950s and was rapidly adopted by the field of medicine (Vash, 1987). Definitions of QOL in the literature view "quality" as synonymous with grade or level, which may vary from high to low. "Life" generally refers to mental life, even though environmental conditions are included in some definitions. Admittedly a complex concept, QOL is typically addressed in three ways, i.e. by user of: (1) subjective estimates of satisfaction with life in general (well being or happiness); (2) subjective estimates of satisfaction with specific life domains (work, finances, health, and relationships with others); and (3) socio-demographic data of life quality (social indicators) reflective of environmental opportunities, barriers, and resources (Baird, Adams, Ausman, & Diaz, 1985; Schuessler & Fisher, 1985). Satisfaction of life domains must also address recreation, a factor that until recently has not been discussed in regard to rehabilitation services when people with disabilities are involved. Quality of Life (QOL) is determined by both inner and outer forces (Roessler, 1990). According to Campbell (1981), one's sense of global well-being "is always dependent on the subjective characteristics of the person and the objective characteristics of the situation." Inner (subjective) factors influencing QOL include aspiration level, past experience, personal expectations, and perception of current condition (Lehman, 1983). QOL is also affected by the level of environmental resources and stressors, as indicated by a variety of social indicators (Schalock, Keith, Hoffman, & Karan, 1989). Therefore, to enhance QOL of people with disabilities, rehabilitation practices must focus on both personal and environmental conditions. An individual personal estimate of QOL may be registered in terms of global life satisfaction or dissatisfaction or domain-specific satisfaction or dissatisfaction. In either case, the judgment requires people to compare what they have with what they believe they deserve. Consistency between the two results in satisfaction and feelings of positive effect and pleasure. Perceiving oneself as having less than one deserves creates dissatisfaction and feelings of negative effect, which create experiences of strain and pressure (Campbell, 1981). Global QOL may be measured by asking the person to indicate on a single dimension (terrible to delighted) his/her current satisfaction with life. For example, "How do you feel about life in general?" A semantic differential format with several different adjective pairs (boring-interesting, useless-worthwhile) for "I think my life is..." may also be used (Lehman, 1983). By addressing global and domain issues in adopting a QOL outlook in rehabilitation, the counselor emphasizes consumer input and, more importantly, the individual affected level is directly related to personal and environment factors that may need to be addressed in counseling. Scherer (1988) identified two personal factors that, if addressed in counseling, have the potential to improve life outcomes -perceived control over QOL and the desire to assimilate into society. Other correlations for people with disabilities underscore the need for intervention that results in safer living conditions, improved health care, prevention of health problems, development of social and leisure skills, increased financial security for satisfaction of social and family relationships, and improved employment status. Roessler (1990) stated that QOL orientation benefits rehabilitation in many ways. It: a) orients the field to a wellness model, b) stresses the multidimensional nature of rehabilitation, outcomes, c) requires intervention that addresses both the development of the individual and the environment in which that person lives, d) enables practitioners to consider the consumer's perspective without imposing their own expectations on the individual, and e) yields program evaluation data indicating the extent to which interventions and facilities have enhanced the "quality" of the individual's life. Conclusion A QOL perspective on rehabilitation counseling results in a greater commitment to a holistic approach. QOL is a wellness construct with multiple dimensions. In contrast to a more traditional disease or medical model, QOL stresses competency, wholeness, robustness in individuals and society (Kirchman, 1986). QOL encompasses not only satisfaction with regard to life's basic necessities but also with regard to less tangible values such as security and fulfillment. Rehabilitation counselors must incorporate in their work as well this commitment to tangible and less tangible values. People with disabilities tend to downplay the relationship of lost function (motoric and physiological) to QOL and stress the importance of social and interpersonal skills. Finally, consistent with the initial premise on global and domain issues, QOL must play an important role in the evaluation of rehabilitation programs. Rehabilitation counselors need to rehabilitate the "whole person" and dedicate their efforts to the end goal of increasing QOL for people with disabilities. References Atkins, BJ (1986): Innovative approaches and research in addressing the needs of nonwhite disabled persons. In S. Walker et al. (Eds.), Equal to the challenge: Perspective, problems, and strategies in rehabilitation of non-white disabled. Proceedings of the National Conference of the Howard University model to improve rehabilitation services to minority populations with handicapping conditions. (Eric Document Reproduction Services No. ED 276 198). Baird, A., Adams, K., Ausman, J., and Diaz, F. (1985). Medical neuropsychological, and Quality-of-Life correlations of cerebrovascular disease. Rehabilitation Psychology, 30(3), 145-155.36. Campbell, A. (1981). The sense of well-being in America. New York: McGraw-Hill. Fine, M. & Asch, A. (1988). Disability beyond stigma: Social interaction, discrimination, and activism. Journal of Social Issues, 44(1), 3-21. Hahn, H. (1987). Advertising the acceptable employable image: Disability and capitalism. Policy Studies Journal, 15(3), 551-568. Hahn, H. (1988). The politics of physical differences: Disability and discrimination. Journal of Social Issues, 44(1), 39-47. Herbert, JT., & Cheatham, HE. (1988). Africentricity and the Black disability experience: A theoretical orientation for rehabilitation counselors. Journal of Applied Rehabilitation Counseling, 19(4), 50-54. Kirchman, M. (1986). Measuring the quality of life. The Occupational Therapy Journal of Research, 6(1), 21-31. Kunce, JT. & Vales, LF. (1984). The Mexican American: Implications for cross-cultural rehabilitation counseling. Rehabilitation Counseling Bulletin, 27, 97-108. Lehman, A. (1983). The well-being of chronic mental patients. Archives of General Psychiatry, 40, 369-373. Liachowitz, CH. (1988). Disability as a social construct: Legislative roots. Philadelphia, PS: University of Pennsylvania Press. Livneh, H. (1988). Rehabilitation goals: Their hierarchical and multifaceted nature. Journal of Applied Rehabilitation Counseling, 19(3), 13-18. Marshall, M. (1987, October). Fighting for their rights. Ebony, pp. 68-70. Roessler, RT. (1990). A quality of life perspective on rehabilitation counseling. Rehabilitation Counseling Bulletin, 34(3), 82-90. Schalock, R., Keith, K., Hoffman, K., & Karan, O. (1989). Quality of life: Measurement and use. Mental Retardation, 27(1), 25-31. Scherer, M. (1988). Assistive device utilization and Quality of life in adults with spinal cord injuries or cerebral palsy. Journal of Applied Rehabilitation Counseling, 19(2), 21-28. Schuessler, K. & Fisher, G. (1985). Quality of life research and sociology. Annual Review of Sociology, 11, 129-149. Vash, C. (1987) Quality of life issues affecting people with disabilities. In W. Emener (Ed.), Public policy issues impacting the future of rehabilitation in America (pp. 2-35). Proceeding of the Second Annual Education Forum. Stillwater, OK: National Clearinghouse of Rehabilitation Training Materials. Walker, S. (1988). Toward economic opportunity and independence: A goal for minority persons with disabilities. In S. Walker et al. (Eds.), Building Bridges to independence. Proceedings of the National Conference on Employment Successes, Problems, and Needs of Black Americans with Disabilities. (ERIC document Reproduction Service No. ED 309 588). Wright, BA. (1983). Physical disability: A psychosocial approach (2nd ed.). New York: Harper and Row. Wright, TJ. (1988). Enhancing the professional preparation of rehabilitation counselors for improved services to ethnic minorities with disabilities. Journal of Applied Rehabilitation Counseling, 19(4), 4-9. African American Women with Disabilities: An Overview Eddie Glenn, Ph.D. Post Doctoral Fellowship Howard University Research and Training Center Abstract The premise of this paper is that African American women with disabilities are victims of the impact of a "triple jeopardy" syndrome: race, gender, and disability. The author makes the point that there is a dire need for research which focuses on the status, needs, and aspirations of African American women with disabilities. The research study under discussion is designed to address the issue of multiple jeopardy in which most African American women with disabilities find themselves. Introduction It is only recently that people in general have begun to hold candid discussions about disability. Even people with disabilities have always been reluctant to talk about themselves. In the past, many persons with disabilities were self-conscious. In addition, many of them refused to admit that there were differences between persons with disabilities and the non- disabled. In the African American communities, discussions of disability were even less prevalent. African American men and women seemed to feel that silence would somehow alleviate the stigma attached to their conditions. This silence was especially acute among African American women who felt that their disabilities were not issues for discussion. These conditions were personal matters which were seldom, if ever, shared with other people. Today, however, a tremendous change in the attitudes of people with disabilities is very evident. Individuals with disabilities, including African American women, are finding it more and more difficult to remain silent about how they should live their lives. Many African American women with disabilities are cognizant of the fact that they are "victims" of the "stigma" attached to three "minority" groups. These perceptions place them in a special category. The purpose of this study is to address the issue of multiple jeopardy in which most African American women with disabilities find themselves. Several objectives are identified including the following: 1) to explore what it means to be an African American woman with a disability in a society that devalues people who are African American, have a disability, and are female. Although men as well as women with disabilities experience severe prejudice and discrimination in our society, women with disabilities carry a double (Froschel & Rousso, 1984) and sometimes triple burden. In other words, African American women with disabilities are faced with additional types of oppression. 2) To examine several aspects of the lives of African American women with disabilities in an effort to determine the impact of this "triple jeopardy" syndrome. It is noted that although there has been an increase of rehabilitation literature on women, there is an underrepresentation of such literature pertaining to African American women with disabilities. 3) To underscore the need for explicit attention to relevant issues regarding the success of African American women with disabilities in the following four areas: (a) support and family relationship, (b) education, (c) participation in the rehabilitation process, and (d) employment and income. Today, there are an estimated 43 million Americans who have disabilities, of which, 13,420,000 are between ages 16 and 64 and report a work-related disability (Bowe, 1990). This figure translates to approximately 8.6%, or about one in every twelve (12) "working- age" Americans. Disability is disproportionately high among "minority" groups (Walker, 1991). Of the 13,420,000 Americans between ages 16 and 64 who have disabilities, some 2,512,000 are African Americans and report a work-related disability. This figure translates to approximately 13.7%, or about one in every seven African Americans who are of "working- age." African Americans make up approximately 19% of all persons of working age who have disabilities, yet they represent just 8.6% of all year round full time workers with disabilities (Bowe, 1990). Therefore, African Americans incur a disability at a much higher rate than their white American counterparts. According to Bowe (1990), of the 13,420,000 adults age 16-64 who report a work-related disability, 6,714,000 or 50%, are women. This figure translates to 8.4% or about one in every 12 "working age" women. Also, further examination of the data indicates that one in three (34%) African American or Hispanic women with disabilities are severely disabled, compared to three in ten in 1981 (Bowe, 1990). In addition, more than two-thirds of African American women with disabilities (69%) are categorized as severely disabled versus 51% of white American women. A review of the data clearly illustrates that not only do women have more disabilities than men, but also that more African American women have disabilities at a disproportionately higher rate when compared with white American women with disabilities. Therefore, one would expect that research and studies would include a substantial amount of information about African Americans with disabilities, especially African American women with disabilities. However, this is not the case. A more recent review of the rehabilitation literature and related disciplines, indicates that issues concerning African American women with disabilities have been neglected. For example, in examining the lifestyles of African American women with disabilities, it is evident that this group of women is confronted with many barriers in the struggle for equality and rights. While women with disabilities in general are subjected to prejudice and discrimination because of their disabilities, African American women with disabilities are at greater risk for becoming victims of negative attitudes and behaviors, because of gender, race/ethnic group, and disability. These individuals are placed in a category known as "triple jeopardy," because they belong to three distinct "minority" groups within the American society. This triple "whammy" puts these individuals at a further disadvantage compared to men and White women who are disabled, as well as women who are not disabled. African American women with disabilities have historically been excluded by both the disability movement as well as the feminist movement. During the 1960s and the 1970s, the disability movement gained momentum on the heels of the Civil Rights Movement. However, African American women with disabilities were not visible. It is time to stop viewing African American women with disabilities as helpless, childlike, dependent, needy, victimized, and passive individuals since it reinforces the traditional stereotypes of women. Inaccurate and negative perceptions are reasons why some African American women with disabilities may have been excluded from the movement. A review of the rehabilitation literature suggests that while there are some African American women with disabilities who have met the challenge, there are still many who are angry and bitter about the isolation, despair, poverty, and powerlessness. Regardless of the design, there is a scarcity of literature about African American women with disabilities. Both the data and current legislation point to the need and can facilitate a change that includes African American women with disabilities in the rehabilitation literature. Although the last decade has seen an increase of rehabilitation literature on women, the existing literature on African American women with disabilities has been limited in scope. Some attempts have been made to incorporate diversity of race, ethnicity, and class. However, African American women with disabilities are still not given sufficient consideration in the literature. Little attention has been given to this unique group which has been so underrepresented over the years. Although there have been legal changes (e.g. The Rehabilitation Act of 1973, amendments to the Rehabilitation Act of 1973, the Education for All Handicapped Children Act of 1975, the Americans with Disabilities Act, etc.), inclusion activities still appear to be restricted in various aspects of the lives of African American women with disabilities. These two distinct movements (the Women and Civil Rights Movements) have encouraged women with disabilities, including African American women with disabilities, to perform self evaluations and to strive for equality and their rights. These individuals, along with political forces and advocacy groups, have managed to help focus on civil rights, interdependence, and abilities. In addition, this ongoing impetus of the Civil Rights Movement has opened doors and provided leverage for African American women with disabilities to join forces and to obtain benefits. According to Bowe (1990), African American women with disabilities comprise 20.4% of the working age population of women with work disabilities; although, African American women are only 12.4% of all 16-64 women (see Figure 1). This is due to the fact that 13.8% of all African American women have work disabilities, as opposed to 7.7% of white women The data also indicate that 9.5% of all 16-64 year old African American women have severe disabilities, more than double the rate of white American women which is 3.98% (Figure 3). A translation of these figures illustrates that of all women who are severely disabled and of working age, African American women with disabilities make up 26%. African American women with disabilities contribute disproportionately to the population of under-educated American women. Three out of every ten women with a disability of working age have fewer than eight years of schooling. Consequently, these individuals are least likely to have a high school diploma. Due to the severity of their disability and the lack of schooling, women with disabilities do not vigorously participate in the labor force (approximately 27.5% are African American women). African American women with disabilities are more likely to live in metropolitan areas, and in the South. They are least likely to be married or living in a family arrangement. In addition, the data indicate that they have an average total income of $6,355 a year. These findings document the increased need for inclusion of African American women with disabilities in research activities that can explore how various dimensions of the "triple jeopardy" impact their lives. There is clearly sufficient data that substantiate the need for increased inclusion of African American women with disabilities in such research activities. It is hoped that future research projects and studies concerning rehabilitation will reflect the exploration of the "triple jeopardy" issue in a manner that will adequately address the needs of African American women with disabilities. Anticipated outcomes of such research activities include the following: a) A theoretical framework designed to be utilized in research with African American women with disabilities, and b) models developed which will facilitate a better understanding of, alleviate the problems thereby reducing some of the barriers which prevent African American women with disabilities from obtaining equality and other civil rights. Hopefully, these research activities will assist in fostering not only a better understanding of the lives of African American women with disabilities, but also enhance their ability to make a contribution and live productive and meaningful lives. References Bowe, F. (1990). Adults with disabilities: A portrait. Washington, DC: President's Committee on Employment of People with Disabilities. Froschel, M & Rousso, H. (Eds). (1984). Building Community: A Manual exploring issues of women and disability. New York, NY: Educational Equity Concepts, Inc. Walker, S. (1991). Building Bridges to Empowerment for Minority Students with Disabilities. OSERS News in Print, III (4), 6-9. MONOGRAPH NO. 9 Independent Living and Women with Disabilities Nancy A. Brooks July, 1982 This is one of a series of monographs on independent living issues published by the Research and Training Center on Independent Living (RT-29). The RT-29 Bibliography provides a complete listing of monographs and other works published by RT-29, and is available on request. Preparation of this monograph was supported in part by Grant #G008006928 form the National Institute of Handicapped Research, to the University of Kansas. EDITORIAL PREFACE There is very little literature in the field of rehabilitation on the unique concerns of women with disabilities. This may be due to the smaller percentage of women with disabilities, and particularly those with severe disabilities. There is evidence of an increasing interest in this group now, however, and the issues and concerns felt by women with disabilities may be receiving the emphasis they deserve in the future. Part of this new interest comes from an increased number of disabilities in women as a result of more frequent participation in high risk activities -skydiving, motorcycling, hang-gliding, etc. - but part of it comes from a more aware women's population. Consciousness raising groups, educational opportunities, and the mass media have increased the awareness of women of their rights, their potential, and their opportunities. It is understandable that this general effect of the women's movement would have an impact on women with disabilities. Some of the specific concerns that are emerging for women with disabilities include such things as body image, sexuality, safety and security, employment, and transportation. While these concerns are not exclusively associated with women, the differences that exist between males and females in general do pose a dual problem for women with disabilities. Prof. Nancy Brooks' paper is an excellent overview of this problem and introduces the reader to Some special insights that should be considered by families and professionals alike. The paper is based on her presentation at the National Conference on Independent Living, "...With Independence and Justice for All," in Kansas City, Missouri, November 11-13, 1981. You are encouraged to read this paper and become more aware of the unique concerns of women who want and need independent living opportunities. Gary M. Clark, Ed.D. Monograph Series on Independent Living R & T Center on Independent Living (RT-29) University of Kansas INDEPENDENT LIVING AND WOMEN WITH DISABILITIES Nancy A. Brooks Assistant Professor of Sociology Wichita State University The theme which is central to independent living (IL) is the development of opportunity to achieve one's full potential (Crewe, 1979). Working to obtain accessible housing, appropriate devices, and equitable laws, the IL movement seeks a basis from which disabled individuals can choose how to live, work, and share family life in the community. In accomplishing this work, advocates of IL challenge traditional social and environmental conditions. When advocates assert that people with disabilities can and should hold a variety of social roles-from butcher and baker to employer and spouse-they argue that the restrictions of custom can and should be augmented to include more non-traditional roles for people who have limiting conditions. Yet one segment of the disabled population deserves expanded attention within the movement. Women with disabilities present an additional challenge to social and environmental customs, for the qualities of femaleness and disability combine to create a double social handicap. Although women have been part of the IL movement as consumers, providers, and activists, their own unique experience as women with disabilities has not yet been adequately investigated or generally incorporated into actual programs. The purpose of this paper is to outline the implications of IL for women by describing the characteristics of disabled women and identifying typical barriers they encounter. When the special circumstances of women with disabilities are more widely understood, the diverse resources of IL can be better applied to serve this population. Women's issues provide an opportunity for IL to expand its agenda by incorporating women's specific needs more clearly into IL aims and programs. ESSENTIAL CHARACTERISTICS Who are the women being discussed here and what are their circumstances? Knowing what women experience and which kinds of services they require is necessary to expansion of IL activities Until the results of the 1980 U.S. Census are distributed, descriptions of any aspect of the disabled population will be tentative. Other surveys of this group provide varied estimations ranging from 18% of the U.S. population (U.S. DREW, 1974) to 14% (U.S. DREW, 1977). Two surveys estimate that more women than men have disabilities and one survey found more males having disabilities (Kutza, 1981). The fact that such a basic factor has not been agreed upon demonstrates the tentative nature of available information. My own judgment tells me that since disability incidence increases as populations age and women tend to live longer than men, it is likely that more women do have disabilities. When considering these discrepancies in basic surveys it is important to note how disability is defined, for a definition which designates inability to maintain employment as the basis of disability will determine that more males are disabled. Advocates for disability programs must examine any bias in the counting procedures that form the justification of policy. Women who have functional disabilities but who have not sought employment may be over looked in the surveys. Then the counting error may be compounded if services are planned for what appears to be a larger male population. Most surveys do show that women are likely to have somewhat different disabilities than men do, being less subject to accident-related disability and more subject to chronic debilitating conditions such as arthritis and diabetes (Kutza, 1981). An outstanding example of this difference in disability is spinal cord injury, an injury most frequently received by young males, although as women take on non-traditional work and recreation their rates of spinal cord injury are likely to increase. For females, the result of the different pattern of disabilities becomes an issue when one realizes how intensive are the medical and rehabilitation efforts in confronting accident-related impairments and how minimal is the organized effort to manage chronic debilitating conditions. There is almost a romance associated with the high technology of trauma whereas the business of dealing with long-term progressive conditions attracts substantially less professional attention. This institutionalized preference for technologically advanced diagnosis and treatment is characteristic of the U.S. health care system (Sidel & Sidel, 1981). A further obstacle barring disabled women as a group from receiving medical and rehabilitation attention comparable to that directed toward predominantly male disabilities is the additional stigma of aging. The chronic conditions which tend to disable a greater proportion of women are associated with life's decline rather than youth. The image of a woman restricting her diet and using insulin to manage diabetes is not as appealing to professionals or others as is the image of a young male quadriplegic using space-age devices. As DeJong (1979) has suggested, the IL movement must come to terms with aging individuals who have disabilities, and when it does, it will accommodate more women in doing so. Other information about women with disabilities shows that regardless of age, women are more likely to have work limitations and to become disabled earlier in their lives (Kutza, 1981). In these circumstances it is apparent that more women must rely upon family support, yet women who are disabled are less likely to be married than are disabled men (Kutza, 1981). Without a spouse to provide care and emotional reinforcement, disabled women become susceptible to remaining in their parents' homes or residing in a care facility. Disabled women also have fewer economic alternatives than disabled men. Being less likely to be in the work force, disabled women have fewer opportunities to build their own financial resources. Then because they have not been employed, women who become disabled are not eligible for social security disability insurance or worker's compensation and must rely upon the lower benefits of supplementary security income. The real Catch 22 occurs, however, when SSDI benefits are indexed to earnings while women working full-time are still earning 59› to every $1.00 earned by males. Here the fundamental stratification into male and female worlds is strikingly evident and personally painful. Traditional benefit programs, the systems many disabled persons rely upon to achieve independent living, have been organized to follow male rather than female life histories. The economic disadvantage extends into work training programs. Although these programs might become channels for introducing disabled women to more economic alternatives, women have been less likely to receive work training (Fine & Asch, 1981). Furthermore, as of 1978 more than two-thirds of the vocational education available to women with disabilities did not prepare them for the job market. Fewer women in rehabilitation attained wage-earning occupations (70.4 percent for females vs. 97.2 percent for males), and employment for rehabilitated women has been clustered in a few low paying, low prestige occupations, primarily service (Greenberg, 1981). These patterns of work preparation reveal institutionalized bias against developing the income producing capacity of women with disabilities. To summarize, general estimates indicate that there are more women with disabilities, they have more work limitations, they receive disabilities earlier, yet they are less likely to be married or be eligible for economic benefit programs. Because of these characteristics, disabled women bring different social and economic needs to IL service systems. BARRIERS IN THE FEMALE EXPERIENCE On a personal level also, women with disabilities challenge the IL movement to confront perhaps more subtle and therefore more stubborn attitudinal barriers than male disability arouses. There is an underlying assumption that women adjust to disability more easily than men (Kutner and Gray, 1981) and therefore do not require organized service systems. Stemming from traditional stereotypes, these attitudes reflect the belief that women as disabled individuals will be passive, dependent, and reclusive. Here the woman who is trying to live independently is placed in double jeopardy by the combination of sexism and handicapism. Programs which assist disabled women should guard against such traditionally narrow visions of women's needs. When the culture interprets disability as a lesser problem for females than for males, it follows that less effort will be made to ease the situations women encounter. There seems to be little appreciation for the fact that dependency creates vulnerability. Like disabled males who do not experience ''the dignity of risk" (Park, 1977) through paid work, women with disabilities who live passive lifestyles have fewer resources for dealing with life's inevitable crises. At the same time that disabled women have had fewer choices in building their lifestyles, they have not had substantial opportunity for carrying out traditional female roles. Perhaps that lack of reinforcement should not be surprising, given the lower prestige and power granted to homemaking and child rearing in our society. In the first place, for a disabled woman to achieve marriage is a challenge in itself. Since physical beauty is a major criterion for attracting husband material, women who have impairments are by definition less eligible for dating and mating. The double standard which applies to nondisabled persons is an additional handicap for a woman with disability. In fact, the sexuality of disabled women is in itself an issue, for women who are disabled may be perceived as asexual, and, again, ineligible for male-female relationships (Shaul, Downing & Laden, 1981; Romano, 1973). Somehow disabled women become "neuter" unless special efforts to compensate are made. Some women may exaggerate their dress, their language, or their mannerisms in order to overcome permanent wallflower status. Even parents can contribute to these efforts by urging their disabled daughters to be outstanding career women as an indicator of better marriageability (Boyle & Shawl, 1979). Once a disabled women has established a sexual partnership, childbearing becomes an issue, if not for the partners, probably for the observers. Whether or not a disabled woman should have children may even become a question of public policy, as in the cases of legally sanctioned sterilization of intellectually disabled women. What is more likely than such overt action is a conspiracy of silence which conceals sex education, contraception, and pregnancy information from the woman who is disabled. When children are born, the conspiracy continues. Managing infant care and child rearing practices is challenging enough for ablebodied mothers, but at least they have an overflowing market of parenting books, clever appliances, and experienced role models to guide them. In contrast, there is little guidance for the disabled mother who may also be confronting an inaccessible physical environment in her home, at the pediatrician's office, and in her shopping center. Her own physical differences can combine with attitudinal and physical barriers to make child rearing an especially strenuous experience. Even without children, the disabled woman who takes on traditional roles is likely to find that homemaking is not necessarily easier than outside employment. Housework can be physically demanding beyond the requirements of most desk jobs and at the same time carry the stress of lower prestige and greater isolation than outside employment (Kutner & Gray, 1981). The need to move, lift, carry, push during routine cleaning chores may strain the capacities of any homemaker, especially when the home is not designed to suit the woman's needs-as most homes are not even for nondisabled homemakers. As I have collected materials on accessible housing, I have been constantly amazed that kitchens receive the most attention regarding design modifications while other functions of household maintenance such as bathroom cleaning and laundry are often overlooked (Brooks & Reeves, submitted). One could wonder if someone else has a vested interest in the woman's capacity to cook and wash dishes! While it might be tempting for women to delegate those chores to others in the household, it is also important to remember that dependency is vulnerability. If the disabled woman is architecturally prevented from choosing how to exercise her own household management, then she is vulnerable to others' decisions and actions. Independent living advocates can help disabled women monitor home designs to prevent barriers to traditional women's roles. Since most working nondisabled women consistently carry the burden of home chores as well as their own employment, attention to home architecture for disabled women is also necessary, perhaps moreso, given their time limitations. Participating in community life through employment or other nontraditional activities (such as entrepreneurship) can be part of the disabled woman's lifestyle just as nondisabled women have been selecting alternative lifestyles. Here the lack of information networks, adequate transportation, child day care, and appropriate role models is an experience shared with ordinary women. However, disabled women have additional burdens to carry. In addition to the stigma of disability itself, women must contend with the wish of others to shelter and protect. Opportunities for training and advancement may be interpreted as "too strenuous" for the disabled woman employee. Coming from combined responses to traditional feminine fragility and the cultural expectation for "taking care of the sick person," these tendencies to protect disabled women may be well intentioned yet result in isolation and exclusion. Women who want to take on alternative roles can be prepared to negotiate the terms of their acceptance, offering information and assertive attitudes on their own behalf while recognizing the confusion their venture into nontraditional roles may bring to the nondisabled. On the personal level, one barrier to IL achievement which especially pertains to women is the issue of self-definition. Because there is the danger that females may internalize the dependent, passive, inferior stereotypes applied to women and to disabled persons generally, they may succumb to a double barrage of negative expectations. Social- psychological findings substantiate the hypothesis that humans tend to evaluate themselves according to the responses we observe from others (Manis & Melzer, 1972). When the responses indicate that both our gender and our physical functioning are below par, we may have a greater tendency to see ourselves as powerless, unworthy, and needing protection from others who are seemingly more capable (Smite, 1979; Weinberg, 1979). Defining oneself negatively may begin with the perception that a woman with a disability does not adhere to the American standard of beauty and desirability. The lack of long, willowy athletic legs or delicately shaped (but capable) hands can become an indication of worthlessness. If a woman can find support groups which will provide positive role models which substitute for the customary "body beautiful" standards of our society, she may be able to reinforce the strengths of her being rather than her limitations. Beyond that, recognizing that negative definitions of femininity and disability are products of culture and are not inherent to physical traits is an important step. But women who have disabilities are in a position of role ambiguity. They experience confusion and conflict in trying to apply women's roles and expectations about disability to themselves. Denied the opportunity to fit traditional expectations for beauty and femininity, disabled women also find substantial barriers against their assumption of alternative female roles, especially since the present condition of women's new roles often requires a full-fledged Amazon. The woman who is disabled, therefore, often is not in a position to take the risks of new role flexibility easily. Not only are their architectural and social barriers to be overcome in accomplishing women's roles, but there is also the question of identity. Does a woman who has a disability consider herself truly feminine or some variation thereof? And if she considers herself feminine, what are the standards she can use to measure her self worth? Since even the changing rules are not easily applied to disabled women, the strength required to participate fully in IL may need to be cultivated. OPPORTUNITIES FOR INDEPENDENT LIVING How can the independent living movement become more responsive to the particular needs of women? Given the observation that women have participated in the movement extensively, perhaps the question should be, to paraphrase Sigmund Freud, "What more does woman want?" First, as with all minority groups, opportunities for mutual discovery and acknowledgement of shared problems must become available. IL programs can become the base for consciousness-raising sessions which will help women to see that their circumstances are shared with others, and, amazingly, that their problems are not all of their own making. Second, IL participants and providers can encourage researchers and technicians to expand their investigations so they include greater examination of women's worlds. Information and devices to aid in child care and family management are much needed. The facts of menstruation, contraception, and menopause need to be better understood for disabled women. Gaps in knowledge can be closed given current research technologies as soon as investigators choose to learn more about the circumstances of disabled women. Third, those who plan and administer the comprehensive services of IL can conduct purposeful audits to determine whether women's needs are being met according to the definitions of women themselves. Peer group programs are legitimate places for these assessments and models for these already exist (Sexton, 1981; Kolb, 1981). Unified by group approaches to shared dilemmas, women with disabilities can gather appropriate resources for achieving their goals. On a social-psychological level such peer group sessions could become clearinghouses for personal issues and choices about lifestyle. Fourth, independent living advocates can include a critique of existing benefit and training programs for women as part of their activity. Those programs which discriminate against femaleness should be identified and changed, for until women have the same preparation and reinforcements for independent living as men, they will remain less likely candidates for independence. Since many benefit programs are now being modified, lobbying efforts at state and federal efforts should be reviewed for their attention to female issues as well as general disability concerns. Last, IL activists can extend efforts to change attitudes about disability by presenting positive images of female worlds. Public service announcements which show a woman who has cerebral palsy caring for a young child are as important as images which picture young male paraplegics working on the assembly line. Providers of service, the general public, and the disabled population itself will benefit from learning more about the possibilities of both traditional and alternative lifestyles which can be available to women with disabilities. IMPLICATIONS If independent living "develops individual power" (Crewe, 1979) both with respect to others and within oneself, then what does that imply for women with disabilities? Asking this question raises issues of women's power in general and reminds us that woman's status has become complicated. When women choose to develop individual power, they face decisions regarding which power they choose to nurture. The flexibility of women's roles today must be taken into consideration if IL efforts are to facilitate women's sense of personal control over daily lifestyle. Nondisabled women are increasingly making choices between traditional homemaker, career, or combined roles, and women with disabilities are also likely to want these choices. The contribution of IL will be to spotlight the choices available and facilitate development in the chosen directions. While IL will not be able to solve all the present concerns about women's roles, the essential aim of disabled women to make their own selections needs to be incorporated into IL work so that services can best assist the achievement of female goals. References Bogle, J., & Shaul, S. Still a woman, still a man. Journal of Current Social Issues, Spring 1979, pp. 39-41. Brooks, N. & Reeves, M. L. Housing and independent living services for disabled persons, in process. Crewe, N. Independent living: An idea whose time has come. Physical Medicine and Rehabilitation, 1979, 60:433-434. DeJong, G. Independent living: From social movement to analytic paradigm. Archives of Physical Medicine and Rehabilitation, 1979, 60:435-446. Fine, M. & Asch, A. Disabled woman: Sexism without the pedestal, Journal of Sociology and Social Welfare, VIII, 1981, 2:233-245. Greenberg, J. M. The bias trap: The interaction of handicapism and other forms of bias, Newsflash, 1981, 3,4:4-8. Kolb, C. Assertiveness training for women with visual impairments, Journal of Sociology and Social Welfare,VIII, 1981, 2: 263-273. Kutza, E. A. Benefits for the disabled: How beneficial for women? Journal of Sociology and Social Welfare, VIII, 1981, 2 :298-319. Kutner, N. G. & Gray, H. L. Women and chronic renal failure: Some neglected issues, Journal of Sociology and Social Welfare, VIII, 1981, 2 :320-333. Manis, J. G. & Meltzer, B. N. Symbolic Interaction: A Reader in Symbolic Interaction. Boston: Allyn and Bacon, Second Edition, 1972. Park, L.D. Barriers to normality for the handicapped adult in the United States, In J. Stubbins (Ed.) Social and Psychological Aspects of Disability. Baltimore: University Park Press, 1977. Romano, M. D. Sexuality and the disabled female, Accent on Living, 1973, Winter, pp. 27-37. Saxton, M. A peer counseling training program for disabled women, Journal of Sociology and Social Welfare, VIII, 1981, _: 334-346. Shaul, S., Downing, P., & Laden, B. F. Like other women: Perspectives of mothers with physical disabilities, Journal of Sociology and Social Welfare, VIII, 1981, 2:364-375. Sidel, V. W. & Sidel, R. Health care and medical care in the United State In P. Conrad & R. Kern (Eds.) The Sociology of Health and Illness: Critical Perspectives, New York: St. Martin's Press, 1981. Smits, S. J. Reactions of self and others to the obviousness and severity of physical disability, In B. Bolton & M. E. Jaques (Eds.) The Rehabilitation Client, Baltimore: University Park Press, 1979. Weinberg, N. The Effect of Physical Disability of Self-Perception, In B. Bolton & M. E. Jaques (Eds.) The Rehabilitation Client, Baltimore: University Park Press, 1979. U. S. Department of Health, Education, and Welfare, Social Security Handbook. Social Security Administration, Washington, D.C.: Government Printing Office, 1974. U. S. Department of Health, Education, and Welfare, Limitation of Activity Due to Chronic Conditions: U. S. 1974, Series 10, Number 11. Rockville Maryland: U. S. DREW, 1977. Self Advocacy Skills Self - Advocacy Curriculum for Minorities with Disabilities Legislative Internship Project A Guide for Personal Testimony:March 4, 1999 The Art of Using Your Personal Experiences to Influence Policy Decisions A Guide to Writing Letters to Public Officials: Contributing to Important Decisions Affecting You and Others A Guide to Writing Letters to the Editor: Expressing Your Opinion to the Public Effectively Consumer Involvement in Community Advocacy Organizations Leadership and Empowerment SELF-ADVOCACY LEARNING OBJECTIVES 1. To understand what self-advocacy is. 2. To understand my rights as a person with a disability. 3. To be able to identify who to contact when I must advocate for myself. 4. To be able to make advocacy phone calls on my own behalf. 5. To be able to write a self-advocacy letter. CONTENT OUTLINE I. Situations requiring self-advocacy. A. Brainstorm the definitions of advocacy and advocate. Then compare to Webster's definition: 1. Webster on advocacy, "the act or process of advocating or supporting a cause or proposal" 2. Webster on advocate, "1: one that pleads the cause of another; specifically, one that pleads the cause of another before a tribunal or judicial court; and 2: one that defends or maintains a cause or proposal" B. People with disabilities have "rights" which are guaranteed by federal, sometimes state and sometimes local laws. Brainstorm the definition of a right. 1. Webster on this type of right: "2: something to which one has a just claim; as a: the power or privilege to which one is justly entitled; 3: something that one may properly claim as due; 4: the cause of truth or justice" 2. Protection from discrimination 3. A guarantee C. What is self-advocacy? 1. Standing up for one's own rights 2. Advocating for one's self 3. Fighting for personal rights or against personal discrimination 4. Speaking for one's self D. What are some of the federal rights people with disabilities have? Ask the group to list federal rights before reviewing the list below: 1. Freedom from discrimination in employment 2. Access to a free, appropriate, public education 3. Access to live wherever you choose 4. Freedom to have access to and participate in any activity or program which is available to the public 5. Access to get on a public bus 6. Access to select an advocate to act on one's own behalf E. Name the federal laws which guarantee certain rights to people with disabilities. What rights do these laws grant you? If you don't know, how could you find out? See handout which explains basics of some of these federal laws. 1. 1968 Architectural Barriers Act 2. 1970 Urban Mass Transit Act 3. 1973 Rehabilitation Act (Section 504) 4. 1975 Developmental Disabilities Bill of Rights Act (P&As established) 5. 1975 P.L. 94-142, Education of All Handicapped Children Act, now titled Individuals with Disabilities Education Act (IDEA) 6. 1978 Rehabilitation Act Amendments (Title VII, Part B) 7. 1983 Rehabilitation Act Amendments (CAPs/Title VII Part A) 8. 1985 Mental Illness Bill of Rights Act (P&As cover MI) 9. 1986 Rehabilitation Act Amendments ("consumer control" for Title VII Part B, supported work) 10. 1988 Civil Rights Restoration Act (organization or corporation receiving federal funds may not discriminate in any programs) 11. 1988 Fair Housing Act Amendments (coverage for people with disabilities and universal design in new construction provisions) 12. 1990 Americans with Disabilities Act (broad, sweeping civil rights protections for people with disabilities -- modeled after Section 504 of the Rehabilitation Act of 1973 -- including non- discrimination by employers, public entities like state and local governments, and private entities providing places of public accommodation and engaging in commerce.) 13. 1992 Civil Rights Act (enables victims of employment discrimination to sue employers for punitive damages, up to $300,000 per instance of discrimination) 14. 1992 Rehabilitation Act Amendments (specific definitions and separate funding for independent living and centers for independent living, increased "consumer control" over vocational rehabilitation services and the presumption that an individual with a disability can benefit from vocational rehabilitation services if there is a disability and if the person has a vocational goal.) F. Describe some situations where a person with a disability may need to engage in self-advocacy to gain a right or protect a privilege. A role play about an individual who wants to be a volunteer at a museum is included with handouts. Ask for four volunteers to read parts in this prepared role play and then lead a discussion about what rights the individual has under the ADA. Also see the module on the ADA. G. Pass out Legal Rights of Disabled Persons and ask participants to mark each item as true or false. After everyone is finished, discuss each statement in small or large groups. H. Pass out Have Legal Rights Been Violated? and ask participants to answer yes or no to each situation described. After everyone is finished, discuss each situation in small or large groups. II. Use of assertive behavior in advocacy settings. A. Review assertive behavior (as opposed to passive or aggressive behaviors) from previous module. What are some characteristics of an assertive person? 1. Making eye contact 2. Using "I" messages 3. Being concise, clear and persistent 4. Using a "reasonable" tone of voice 5. Active listening 6. Making appropriate self-disclosures 7. Making personal decisions 8. Taking risks 9. Being self-confident B. What do assertive people and self-advocates have in common? Lead a discussion about assertiveness and its importance to being a strong self-advocate. C. When you think you have been discriminated against or you are not getting what you need, how do you find out where to go for help? Finding the right or knowledgeable person who can help you go farther often takes assertiveness skills too. Brainstorm the things you could to seek advocacy support from someone else in small groups or as a large group. D. Discuss what you should do after someone has helped you put the advocacy pieces together. III. How to follow the hierarchy until you get what you want. A. What is a "hierarchy?" How does it relate to self-advocacy? 1. Webster on hierarchy, "3: a body of persons in authority; 4: the classification of a group of people according to their ability or to economic, social, or professional standing; also the group so classified; 5: a graded or ranked series." 2. "The system," "the bureaucracy" 3. Self-advocacy often means learning how to find your way through the hierarchy (system or bureaucracy) to get what you want. 4. The ultimate power in the hierarchy of government is the Congress (or the state legislature or the city council, etc.) B. Informal role plays: 1. Your social security check has not arrived on time. Who do you call? What happens if that person cannot help you? Who do you call next? Next after that? 2. You have just made an application for an apartment in a new housing authority building. You have cerebral palsy and use a motorized wheelchair. You know that at least five units in the building are wheelchair accessible. The resident manager takes one look at you and says, "Only people who can take care of themselves can live in this building. I'm afraid you will have to look elsewhere." What do you say? If you get no positive response from the resident manager, who would you talk to next? Next after that? 3. You are a deaf and just graduated from a master's program in business administration. You apply for a job with a major Fortune 500 company as a statistical analyst in their computer division. A friend told you about this job and you are clearly qualified. When you are called for an interview, you tell the employer you will need an interpreter for your interview. The employer says, "You need an interpreter to talk to me? Well, I am sorry, then, but you clearly are not qualified for this job." He hangs up. Who do you call? If you don't get a satisfactory response from this person, who do you call next? Next after that? 4. You are a recent graduate of the Harvard Law School and you are blind. You have had two interviews with a major law firm in the city and feel things are going pretty well. Now the administrative partner of the law firm asks you to produce information about what will be required to make reasonable accommodation on the job for you. You begin to tell him about the optiscan computer system and the braille programs that are available by computer. He seems agitated. In fact, he finally says, "Well, I don't think we can buy you a computer. That is going far beyond reasonable accommodation in my book. I am sorry, but I will have to tell the managing partners that I am opposed to your hire on this basis." Who do you call? What do you do if you get an unsatisfactory response from this person? Who do you call next? C. What chain of people did you contact in each role play? How many chains of command led to filing a complaint with a federal agency for breaking a federal law? Which federal agencies of the government or which courts of law do you think you should go to for each of the role plays above? 1. Social Security Administration -- Department of Health and Human Services (HHS), or contact your elected federal officials (Congressman or Senator) 2. Local housing authority -- Department of Housing and Urban Development (HUD) or contact elected officials; local human relations commission or local civil court 3. Private employer (corporation) -- if they have contracts with the federal government, you contact the Office of Civil Rights of the federal agency through which they get their contracts or you may contact the Equal Employment Opportunity Commission (EEOC) if they are not getting federal funds; you can contact your state or local human relations or rights commission; or you can go to a civil court. 4. Private employer (law firm) -- if they have contracts with the federal government, you contact the OCR office of the federal agency through which they get their contracts or, in this case, you may contact the Attorney General's Office to investigate possible non-compliance issues. Again, you can go to the federal EEOC, state human relations or rights commission, or local civil court. IV. Getting help when you need it. A. What fears do you have about doing your own advocacy? 1. Taking risks 2. Could lose benefits, job, housing, etc. 3. May not be "smart enough" to stand up for myself 4. Can't think "fast on my feet" 5. Uncomfortable speaking to people in authority B. How could you overcome some of these fears? 1. Work with a partner or someone who has been there (i.e., a peer counselor) or contact a self-help center to see if a self-help group appropriate to you is available. 2. Contact an advocacy organization (like a center for independent living, coalition or other consumer group like the National Association of the Deaf, National Federation of the Blind, etc.). 3. Contact state-wide advocacy organizations or programs like Protection & Advocacy (P&A) agencies, governor's offices on disability issues, legal aid societies. 4. Practice what you want to say on someone else first, like an informal role play. Ask them to be tough with you and then critique how well you did. 5. Practice self-advocacy skills on a smaller issue before jumping to a big issue. 6. Put everything into writing and ask someone else to read it and make comments on it. V. How to write an advocacy letter. A. Advocacy letters should be clear, concise and to the point. Using the third role play (you are deaf and need an interpreter for a job interview) above, write an advocacy letter which includes the following things: 1. The date of the letter. 2. Name, title, office, address, city, state, and zip code of intended recipient. 3. A friendly salutation and first sentence. 4. A statement of what you want or are looking for from the intended recipient. 5. A brief description of the problem. 6. The names of other people you have talked to or written to in order to resolve the problem. 7. A closing statement or question. What are you asking the person to whom you are writing to do? What response are you expecting? 8. Your typed and/or signed name. B. Pair off and have participants read each other's letters. Does the letter contain all of the above items? Is it clear? Does it request something specific? How would you respond to your partner's letter if you were the intended recipient? C. Now write another letter in response to the second role play above (you have cerebral palsy and make application for a wheelchair accessible unit in a new housing authority building). Pair off again, this time with a different partner, and repeat the exercise. D. When is it appropriate to write a self-advocacy letter? 1. When you are afraid to make a call or visit the person 2. When you want to ensure that the facts are in writing 3. When you want to keep a "paper trail" of your efforts 4. When the rules or law says you must submit something in writing HANDOUTS  Legal Rights of People with Disabilities  Have Legal Rights been Violated? Facilitator should order copies of "Self-Advocacy: How to be a Winner," a reprint from the National Information Center for Children and Youth with Disabilities (NICHCY) [If this handout is not included in your copy of the curricula or if you bought a diskette, write to NICHCY and ask for a copy of this reprint: NICHCY, Box 1492, Washington, D.C. 20013-1492 or call 1/800/999-5599 toll free or 1/703/893-6061 local to D.C. or 703/893-8614 TT] Legal Rights of People with Disabilities Name:________________________________________________ _______ Date:_________________________________________________ ______ Score:_________________________________ DIRECTIONS: For the statements which are true, mark a "T" for true. For those which are false, mark an "F" for false. 1. Students under the age of 21 with disabilities are entitled to a free, appropriate, public education. 2. Blind students can be educated in classes with non-blind students. 3. If a blind person's guide dog damages someone's property, the owner of the property is not responsible. 4. If a building was built 30 years ago, every part of it does not need to be accessible to people who use wheelchairs. 5. People who use wheelchairs have a right to ride on public transportation vehicles. 6. A college admissions form cannot ask applicants if they have a disability. 7. An employment counselor at a community college does not need to help students with disabilities. 8. An employer cannot use a physical examination (medical examination) as a way to avoid hiring someone with a disability. 9. An employer can demand that an employee with a disability pay for making a restroom accessible. 10. An adult who has been a "special education" student can rent an apartment. Have Legal Rights Been Violated? Name:________________________________________________ _______ Date:_________________________________________________ ______ Score:____________________________ DIRECTIONS: Decide if rights of people with disabilities have been violated in each situation below. Check "yes" or "no." SITUATION Y ES NO 1. Jason is deaf. The school system will not provide an interpreter because he is the only deaf student in the school building. 2. A new city library is being built with no elevator to the second and third floor. 3. A landlord informs a tenant who is blind that his rent will be raised $25 per month because he has a guide dog. 4. During a job interview, the employer asks the applicant if she is mentally retarded. 5. A student in a special education program is told he must take physical education in school. 6. An employer refuses to offer health insurance to an employee because that person has an artificial leg. 7. Thomas walks with two canes. The city bus driver told him he cannot board a city bus because it is too dangerous. 8. Mrs. Williams' guide dog damaged the carpet in her apartment. The landlord says she must pay for the damages. 9. The employment counselor at the community college where Joe attends school has told him he cannot expect any good job offers after he graduates because he uses a wheelchair. 10. Marilyn applied for a job as a typist and was told by the employer's personnel office that she would have to take a typing test for speed and accuracy on a computer keyboard. She didn't think it was fair because she cannot use her hands very well. 11. Mary and Debbie plan to share an apartment and leave their group home. One landlord told them she couldn't rent to people who are mentally retarded. 12. Bill, who is visually impaired, was told by his English teacher that he cannot use a tape recorder in class because it is too noisy. 13. During a job interview for a grocery store cashier position, Darla was asked if she had a history of mental illness. Darla has been treated, off and on over the last four years, for depression. 14. An employer remodeled a bathroom so it was large enough for wheelchair users. One worker who uses a wheelchair thought the employer should have built an addition to the building with an entirely new accessible bathroom rather than remodeling an old one. 15. Steve was taking a ferry ride on a city operated ferry to an island. The boat captain told him he would have to pay double fare because his wheelchair took up extra space. REFERENCES Congressional Yellow Book, Monitor Publishing Co., Suite 1000, 1301 Pennsylvania Ave., N.W., Washington, D.C. 20004 How to Get Services by Being Assertive, Coordinating Council for Handicapped Children, Chicago, IL (312/939-3513) How to Organize an Effective Parent/Advocacy Group and Move Bureaucracies, Coordinating Council for Handicapped Children, Chicago, IL (312/939-3513) The following are available at the Access Living office: Action through Advocacy: A Manual for Training Volunteers, Carolyn D. Rude, Research & Training Center in Mental Retardation, Texas Tech. University 1980 Advancing Your Citizenship: Essays on Consumer Involvement of the Handicapped, Philip Browning, Cindy Rhoades and Anita Crosson, R&TC in Mental Retardation, University of Oregon, Eugene,OR 97403, 1980 Citizen Advocacy Resources, Carolyn D. Rude, editor, Research & Training Center in Mental Retardation, Texas Tech. University 1979 A Consumer's Guide to Organizing the Handicapped, Harold Remmes, Massachusetts Council of Organizations of the Handicapped Consumer Rights for Disabled Citizens, City of New York Department of Consumer Affairs 1976 Disabled Citizens at the Polls: A Guide for Election Officials, National Organization on Disability, 2100 Pennsylvania Ave., N.W., Washington, D.C. 20037 Guide to Disability Civil Rights Volume II, Updates, Disability Rights Education and Defense Fund (DREDF), Berkeley, CA Illinois Department of Rehabilitation Services Legislative Handbook, Jane Elmore, Sue Baltusevich, Gwen Peregrin 1980 Laws for Youth (pamphlet), Illinois General Assembly, January 1986 (Publication 203) Legal Advocacy for the Handicapped, A Legal Services Practice Manual, Paul Hearne, Edidtor, Office of Program Support, Legal Services Corp., 1981 Legal Rights of the Hearing Impaired by DuBow and others References (continued) Manual on the Equalization of Opportunities for Disabled Persons, United Nations, New York, NY 1986 The Medicolegal Rights of Physically Disabled Persons Coursebook, contact Attorney James F. Holzer, c/o Tufts-New England Medical Center, 171 Harrison Avenue, Box 427, Boston, MA 02111. Readings on Self-Advocacy by Groups of People with Developmental Disabilities, Rehabilitation Research & Training Center on Mental Retardation, Eugene, OR Representing Disability Claimants Before the Social Security Administration, a Primer for New Advocates, Greater Upstate Law Project and the Monroe County Legal Assistance Corporation, 100 Powers Building, 16 West Main Street, Rochester, NY 14614, September, 1985 The Self-Advocacy Workbook, Nancy E.S. Gardner, Technical Assistance for Self-Advocacy Project, Lawrence, KS 1980 MAGAZINES and JOURNALS Disability Rag This Brain Has a Mouth Clearinghouse Review, National Clearinghouse for Legal Services Disabled Americans Report Issues in Law & Medicine CONSUMER SELF-ASSESSMENT FORM Name:_____________________________________ Date:________________ ___ Pre-Workshop Assessment OR ___ Post-Workshop Assessment # Assessment statement Understand Do Not Understand Completely At All 10 9 8 7 6 5 4 3 2 1 1 I understand what self-advocacy is. 2 I understand my federal rights as a person with a disability. 3 I am able to identify who to contact when I must advocate for myself. 4 I am able to make advocacy phone calls on my own behalf. 5 I am able to write a self-advocacy letter. Curriculum for Minorities with Disabilities Legislative Internship Project LEARNING OBJECTIVES 1. To understand how the legislative process works. 2. To understand my rights as a person with a disability and what self-advocacy is.. 3. To be able to identify who to contact when I must advocate for legislation. 4. To be able to make advocacy phone calls on behalf of legislation. 5. To be able to write a self-advocacy letter on behalf of legislation. 6. To understand how to make my voice heard on legislation in Chicago and Springfield. CONTENT OUTLINE I. LEGISLATIVE PROCESS/ADVOCACY/SELF-ADVOCACY A. Brainstorm the definitions of legislation and advocacy. Then compare to Webster's/others definitions: (e.g. Webster on advocacy, "the act or process of advocating or supporting a cause or proposal.") 1. What is the legislative process in Illinois? Examine what a bill is. Examine how bills are developed, introduced, sponsored, approved, vetoed, and signed into law. 2. Why is self-advocacy necessary on legislation? How is it connected to people's own needs and human rights? B. What is self-advocacy? (Self-advocacy as the bridge between legislation and disability rights) 1. Standing up for one's own rights 2. Advocating for one's self (e.g. on a particular bill) 3. Fighting against personal discrimination II. DISABILITY RIGHTS A. Brainstorm the definitions of civil rights/ disability rights. 1. What is the relationship between legislation and disability rights? 2. What is the history of disability rights? 3. What is the relationship between civil rights and disability rights? 4. What is the relationship between the civil rights and the disability rights movement? I. LEGISLATURES/ LEGISLATIVE PROCESS ***City/State legislatures-these are the bodies of elected officials who make laws for the state. The laws they make, combined with federal funds and federal laws, mandate what state agencies do and how they will do it. What do you know about your state legislature? Where could you find out more about it? Ask participants to call their state senator or state representative office to get answers to the questions below: 1. When does it meet (i.e., when is it "in session")? 2. Where does it meet? 3. What are its committees? 4. Which committees have jurisdiction over the state agencies you listed above? 5. Who is your local state senator and local state representative? 6. How would you write a letter to your state senator or state representative? What is the proper way to address an elected official? Federal legislature (Congress)-this is the body of elected officials who enact federal (national) laws and appropriate funds for programs and services of the federal government. They develop laws and programs which must be carried out by the federal agencies named above. They also have an oversight responsibility to ensure that the federal and sometimes state agencies authorized to carry out federal laws and programs do so efficiently and effectively. 1. Who are your U.S. Senators and who is your U.S. 2. Representative? How could you find out? Ask participants to call the local federal information office to find out the name, addresses, and telephone numbers of their elected federal representatives. 3. What are some issues/bills you might want to write to them about? 4. Brainstorm what issues/bills are important right now and might be appropriate for a letter Different kinds of laws and the courts which enforce them. 1. Local laws-may be passed by your city council, town council, county commissioners or similar type of local government. When laws or ordinances are local, they are enforced through the local court system which may be city or county. Local laws which violate state or federal laws are usually tested in court and if they are illegal, the court will declare them such. 2. 3. State laws-these are laws passed by your state legislature and are enforced by local, state and federal courts. All criminal statutes or laws are written and enforced by the state in which you live. 4. Federal laws and regulations-federal laws are passed by the United States Congress and federal regulations are written by federal government agencies to implement those laws. Federal laws and regulations are enforced by local, state and federal courts, including the Supreme Court of the United States. *** LEGISLATIVE ADVOCACY: When working with an advocacy organization, what are some of the concerns which might have an impact on which problems the group decides to address? Joining with advocacy organizations: Almost all systems change comes about as a result of group efforts. 1. How difficult the legislation will be to pass. 2. What strategies will work for solving the problem. 3. What kind of resources, financial or human, it will take to pass the bill. 4. How many people are affected by the problem. 5. How knowledgeable the group is about the problem and ways of solving it. 6. How can the group prove its claim about the numbers of people affected and how they are affected by the problem. Strategies: 1. Letter writing campaigns. 2. Public media attention and news coverage. 3. Sponsoring an ordinance or a bill in the city or county council, state legislator or U.S. Congress. 4. Seeking public hearings on the problem. 5. Street actions like public demonstrations, sit-ins, marches, blockades. 6. Law suits-either individual or class action, sue for damages or file for an injunction to stop something from happening. 7. Filing an official complaint (if there is a complaint system in place for this problem). 8. Educating people outside the organization about the legislation. In each case cited above, advocacy organizations are probably working together to pass laws. Think of all the advocacy organizations which have helped promote the cause of full integration for people with disabilities: 1. Local centers for independent living and self-help groups. 2. State associations of centers for independent living and self-help groups. 3. 4. State and local associations and coalitions of people with disabilities. Cerebral Palsy (UCP), Association for Retarded Citizens (ARC), and Epilepsy Foundation. 5. National coalitions like the American Coalition of Citizens with Disabilities (ACCD, now defunct), the National Council on Independent Living (NCIL), The Association for the Severely Handicapped (TASH), the Coalition for Citizens with Disabilities (CCD, which is a Washington-based coalition of other national organizations concerned with disability issues). 6. National not-for-profit organizations like the World Institute on Disability (WID) and the Disability Rights Education and Defense Fund (DREDF). 7. National single disability associations like the National Federation of the Blind, National Association of the Deaf, etc. 8. Federally mandated and funded state organizations whose mission is to advocate and protect the rights of individuals with disabilities like Protection and Advocacy (P&As) 9. organizations and Client Assistance Projects (CAPs). 10. Law firms and legal aid offices which take on disability-related legal issues free of charge or for minimal fees. *** Describe some situations where a person with a disability may need to engage in self- advocacy to support legislation. A role play about an individual who wants to advocate in Springfield. Ask for four volunteers to play legislator, lobbyist, chief-of-staff, self-advocate. Use of assertive behavior in advocacy settings. 1. Making eye contact 2. Using "I" messages 3. Being concise, clear and persistent 4. Using a "reasonable" tone of voice 5. Active listening 6. Making appropriate self-disclosures 7. Making personal decisions 8. Taking risks 9. Being self-confident A. What do assertive people and self-advocates have in common? Lead a discussion about assertiveness and its importance to being a strong self-advocate. B. How to follow the hierarchy until you get what you want. 1. What is a "hierarchy?" How does it relate to self-advocacy? (Webster on hierarchy, "3: a body of persons in authority; 4: the classification of a group of people according to their ability or to economic, social, or professional standing; also the group so classified; 5: a graded or ranked series.") 2. "The system," "the bureaucracy," the legislature. 3. Self-advocacy often means learning how to find your way through the hierarchy (system or bureaucracy) to get what you want. (Getting help when you need it. What fears do you have about doing your own advocacy? Taking risks; Could lose benefits, job, housing, etc.; May not be "smart enough" to stand up for myself; Can't think "fast on my feet"; Uncomfortable speaking to politicians/ people in authority.) C. How could you overcome some of these fears? 1. Work with a partner or someone who has been there; Practice what you want to say on someone else first, like an informal role play. Ask them to be tough with you and then critique how well you did. D. How to write an advocacy letter (on legislation). 1. Advocacy letters should be clear, concise and to the point. Using the third role play (you are deaf and need an interpreter for a job interview) above, write an advocacy letter which includes the following things: the date of the letter; Name, title, office, address, city, state, and zip code of intended recipient; A friendly salutation and first sentence; A atement of what you want legislation you are interested (be specific about a bill) or are looking for from the intended recipient; A brief description of the problem; The names of other people you have talked to or written to in order to resolve the problem; A closing statement or question; Your typed and/or signed name. What are you asking the person to whom you are writing to do? What response are you expecting? E. Pair off and have participants read each other's letters. Does the letter contain all of the above items? Is it clear? Does it request something specific? How would you respond to your partner's letter if you were the intended recipient? F. Now write another letter in response to partner's letter (acting as if you are the politician). Pair off again, this time with a different partner, and repeat the exercise. II. DISABILITY RIGHTS People with disabilities have "rights" which are guaranteed by federal, sometimes state and sometimes local laws. Brainstorm the definition of a right. (e.g. Webster on this type of right: "2: something to which one has a just claim; as a: the power or privilege to which one is justly entitled; 3: something that one may properly claim as due; 4: the cause of truth or justice.") A. What are some of the federal rights people with disabilities have? Ask the group to list federal rights before reviewing the list below: 1. Freedom from discrimination in employment 2. Access to a free, appropriate, public education 3. Access to live wherever you choose 4. Freedom to have access to and participate in any activity or program which is available to the public 5. Access to get on a public bus 6. Access to select an advocate to act on one's own behalf B. Name the federal laws which guarantee certain rights to people with disabilities. What rights do these laws grant you? If you don't know, how could you find out? See handout which explains basics of some of these federal laws. 1. 1973 Rehabilitation Act (Section 504) 2. 1975 Developmental Disabilities Bill of Rights Act (P&As established) 3. 1975 P.L. 94-142, Education of All Handicapped Children Act, now titled Individuals with Disabilities Education Act (IDEA) 4. 1978 Rehabilitation Act Amendments (Title VII, Part B) 5. 1988 Civil Rights Restoration Act (organization or corporation receiving federal funds may not discriminate in any programs) 6. 1988 Fair Housing Act Amendments (coverage for people with disabilities and universal design in new construction provisions) 7. 1990 Americans with Disabilities Act (broad, sweeping civil rights protections for people with disabilities-modeled after Section 504 of the Rehabilitation Act of 1973 -- including non-discrimination by employers, public entities like state and local governments, and private entities providing places of public accommodation and engaging in commerce.) 8. 1992 Civil Rights Act (enables victims of employment discrimination to sue employers for punitive damages, up to $300,000 per instance of discrimination) Legal Rights of People with Disabilities Name:________________________________________________ _______ Date:_________________________________________________ ______ Score:_________________________________ DIRECTIONS: For the statements which are true, mark a "T" for true. For those which are false, mark an "F" for false. _____ 1. Students under the age of 21 with disabilities are entitled to a free, appropriate, public education. _____ 2. Blind students can be educated in classes with non-blind students. _____ 3. If a blind person's guide dog damages someone's property, the owner of the property is not responsible. _____ 4. If a building was built 30 years ago, every part of it does not need to be accessible to people who use wheelchairs. _____ 5. People who use wheelchairs have a right to ride on public transportation vehicles. _____ 6. A college admissions form cannot ask applicants if they have a disability. _____ 7. An employment counselor at a community college does not need to help students with disabilities. _____ 8. An employer cannot use a physical examination (medical examination) as a way to avoid hiring someone with a disability. _____ 9. An employer can demand that an employee with a disability pay for making a restroom accessible. _____ 10. An adult who has been a "special education" student can rent an apartment. Have Legal Rights Been Violated? Name:________________________________________________ _______ Date:_________________________________________________ ______ Score:____________________________ DIRECTIONS: Decide if rights of people with disabilities have been violated in each situation below. Check "yes" or "no." SITUATION Y ES NO 1. Jason is deaf. The school system will not provide an interpreter because he is the only deaf student in the school building. 2. A new city library is being built with no elevator to the second and third floor. 3. A landlord informs a tenant who is blind that his rent will be raised $25 per month because he has a guide dog. 4. During a job interview, the employer asks the applicant if she is mentally retarded. 5. A student in a special education program is told he must take physical education in school. 6. An employer refuses to offer health insurance to an employee because that person has an artificial leg. 7. Thomas walks with two canes. The city bus driver told him he cannot board a city bus because it is too dangerous. 8. Mrs. Williams' guide dog damaged the carpet in her apartment. The landlord says she must pay for the damages. 9. The employment counselor at the community college where Joe attends school has told him he cannot expect any good job offers after he graduates because he uses a wheelchair. 10. Marilyn applied for a job as a typist and was told by the employer's personnel office that she would have to take a typing test for speed and accuracy on a computer keyboard. She didn't think it was fair because she cannot use her hands very well. 11. Mary and Debbie plan to share an apartment and leave their group home. One landlord told them she couldn't rent to people who are mentally retarded. 12. Bill, who is visually impaired, was told by his English teacher that he cannot use a tape recorder in class because it is too noisy. 13. During a job interview for a grocery store cashier position, Darla was asked if she had a history of mental illness. Darla has been treated, off and on over the last four years, for depression. 14. An employer remodeled a bathroom so it was large enough for wheelchair users. One worker who uses a wheelchair thought the employer should have built an addition to the building with an entirely new accessible bathroom rather than remodeling an old one. 15. Steve was taking a ferry ride on a city operated ferry to an island. The boat captain told him he would have to pay double fare because his wheelchair took up extra space. REFERENCES Action through Advocacy: A Manual for Training Volunteers, Carolyn D. Rude, Research & Training Center in Mental Retardation, Texas Tech. University 1980 Guide to Disability Civil Rights Volume II, LEGISLATION and the LEGISLATIVE PROCESS, Disability Rights Education and Defense Fund (DREDF), Berkeley, CA Manual on the Equalization of Opportunities for Disabled Persons, United Nations, New York, NY 1986 The Self-Advocacy Workbook, Nancy E.S. Gardner, Technical Assistance for Self- Advocacy Project, Lawrence, KS 1980 MAGAZINES and JOURNALS Disability Rag This Brain Has a Mouth CONSUMER SELF-ASSESSMENT FORM Name:_____________________________________ Date:________________ ___ Pre-Workshop Assessment OR ___ Post-Workshop Assessment # Assessment statement Understand Do Not Understand Completely At All 10 9 8 7 6 5 4 3 2 1 1 I understand what self-advocacy is. 2 I understand how the Illinois legislative rocess works. 3 I am able to identify who to contact when I must advocate for myself in Springfield/Chicago. 4 I am able to make advocacy phone calls on my own behalf. 5 I am able to write a self- advocacy letter on legislation. A Guide For Personal Testimony: The Art of Using Your Personal Experiences to Influence Policy Decisions Tom Seekins and Stephen B. Fawcett 1982 Research and Training Center on Independent Living University of Kansas, Lawrence, KS 66045 The quality of life in any community is determined to some extent by the laws and policies of governmental units and agencies. One way of changing community conditions is to change laws and policies. From a group's perspective, any proposed change may be for the better or the worse. However, for changes in laws, regulations, or policies to occur, a public hearing is often required. During public hearings, people have an equal opportunity to speak either for or against proposed changes. Many different types of testimony can be and usually are provided during public hearings. These may range from detailed, expert testimony using facts and figures to brief, personal testimony using personal experiences. Each type of testimony has great importance, because public officials often judge the importance of an issue by the number and type of comments they hear. The purpose of brief, personal testimony is to help those making the decision understand the issues in human or personal terms. As someone interested in giving personal testimony, your task is to tell a story about the changes being considered: to tell what they mean to you. This is not an easy task. It is never easy to talk about important things in limited time, and the issues may be very emotional ones. This booklet is designed to help you prepare your testimony and to teach you how to present it successfully. Instructions First, write your answer to these three questions in the space provided. 1. To whom will you be speaking when you give this testimony? 2. What is the rule, policy, law, or regulation this group might make or change? 3. Why is it important to you? Second, read the following example of a successful testimony. Note the kind of statements made. Imagine yourself there. Ask yourself, what were the most important things this person said? Next, use the guide for preparing personal testimony to write the comments you want to make. After you have written your comments in the testimony guide, write them all together on a separate sheet of paper. Read your comments to make sure you said everything you want to say. Time how long it takes you to read your testimony. If it takes more than three minutes, make it shorter by cutting out some comments. Two minutes is excellent. Finally, memorize your comments, if you have time. Using notes to read testimony can distract you and your listeners from what you have to say. In addition, you are less likely to forget an important point you want to make. Memorizing your testimony is especially important when testimony is limited to one appearance scheduled in advance. In this case, you can't go back to make a point you missed. An Example Of Successful Testimony Scene: A public hearing concerning a change in educational policy that would reduce the requirement for public schools to provide equal education to all students. A woman took the floor. There was a moment of silence as she looked at the panel of officials who were charged with the decision. She said, "My name is Barbara Krieder. It may not look like it to you, but I'm disabled. I have a learning disability. I can't read. When I was a child, my disability was not diagnosed, and I didn't get the special kind of help from my teacher that could have helped me learn how to read. Now I can't go to a restaurant alone, because I'm too embarrassed to tell the waitress I can't read the menu. I can't drive, because I can't read the signs on the road. I can't even read stories to my own children. I'm not stupid. I just never learned how to read. She paused for a moment. "Now, whatever you do won't change things for me. It's too late for me. But it's not too late for these young kids. If you change the law, the way I hear it, the kids whose lives were looking brighter than mine will end up suffering the same as I did. Teachers won't know that they have a disability." "They'll push the kids too hard, or in the wrong way, or, most likely they will give up on them like they gave up on me. Those kids will just turn into shadows. So, what do you tell a kid like me? Where's the justice in it?" "What kind of progress have we made when kids like me still can't learn to read?" She stopped and looked at each member on the panel. Then she returned to her seat. Testimony Preparation Guide Now take the time to prepare your own testimony following the general 'testimony activities seen in the two examples. Use the blank spaces to write what you want to say in Your testimony. 1. GO TO THE PODIUM. Move up to the podium when called or when it's your 2. STOP AT THE PODIUM AND PAUSE. Stop at the place where testimony is to be given and take a deep breath. 3. LOOK AT EACH MEMBER OF THE PANEL BRIEFLY. Slowly sweep your eyes down the row of people to whom you will speak. Look at each one for almost a second. Hint: As you look, try to make eye contact with each person. 4. LOOK DIRECTLY AT THE CHAIRPERSON OR LEADER OF THE HEARING. This person usually sits in the middle of the panel. You should address all your comments to this person. 5. STATE YOUR NAME. 6. MAKE A STATEMENT ABOUT YOURSELF Tell the panel some key bit of information about yourself that makes your comments particularly important. Examples: "It may not look like it to you, but I'm disabled." "To you, I probably look just like anybody you might see on the street. But I'm poor." YOU MIGHT SAY: 7. DESCRIBE YOUR CIRCUMSTANCES. Describe some details about the condition that you just identified. Be brief: 5-10 seconds. Examples: "I can't read." "I have three kids at home and I haven 't worked three days in a row since August." YOU MIGHT SAY: 8. TELL HOW THIS HAPPENED OR WHAT LED UP TO IT. Tell some details about what caused or contributed to your circumstances. Be brief: 5-10 seconds. Examples: "When I was a kid, my disability was not diagnosed, and I didn't get the special kind of help from my teacher that I needed." "I was laid off eight months ago when the tire plant closed and my unemployment is out." YOU MIGHT SAY: 9. TELL WHAT THIS MEANS TO YOU IN YOUR EVERYDAY LIFE. Explain how your circumstances affect the way you live, the decisions you make, the things you do, or the way that you are treated by others. Be brief: about 10 seconds. Examples: "Now, I can't go to a restaurant alone, because I'm too embarrassed to ask for help reading the menu. I can't drive, because I can't read the signs. I can't read stories to my own children. I'm not stupid. I just never learned to read." "When I walk home from the job service each day, I check the dumpsters for things we need. I found this shirt in an alley! So how can I pay a $160 utility bill?" YOU MIGHT SAY: 10. PAUSE. Hints Take a deep breath and count to three while breathing out slowly. 11. TELL HOW THE DECISION THESE PEOPLE MAKE WILL AFFECT YOU PERSONALLY. Describe the likely effect of the proposed change on you. Will things be better, worse, or stay the same? Explain the difference between the way things are for you now and the way things will probably be for you if things are changed. Be brief: 5-10 seconds. Examples: "Whatever you do won't change things for me. It's too late for me." "As it stands now, if you don 't start charging us less for the heat, I'll just have to quit paying my bills altogether and take my chances with next winter. But if you start these new rates, maybe we can keep our use low enough and get by and catch up on our bills. Then maybe by next spring I'll have a job. " YOU MIGHT SAY: 12. TELL HOW THE DECISION WILL AFFECT OTHERS YOU KNOW. If you know others who will be affected, tell how the change will affect them. Be brief: 5-10 seconds Examples: "But it's not too late for these Young kids. If you change the law, the way I hear it, the kids whose lives were looking brighter than" mine will end up suffering the same as me. Teachers won't know the kids are disabled. They'll push the kids too hard, or in the wrong way, or, most likely, they will give up on them like they gave up on me. Those kids will turn into shadows." "But you know it's not just me. My neighbor's in the same boat. Except he has less seniority at the plant. So that's at least two of us." YOU MIGHT SAY: 13. ASK A VALUE QUESTION. Ask a question or two about what seems most important. Important values include ideas such as freedom of choice, equal opportunity, safety, fairness or justice, self-respect, and progress. Examples "So, what do you tell a kid like me? Where's the justice in it? What kind of progress have we made when kids like me still can 't learn to read?" "So, how am I supposed to keep my kids warm? What would you want me to do, if we changed places?" YOU MIGHT SAY: 14. PAUSE AND LOOK AT EACH MEMBER BRIEFLY. Slowly sweep your eyes down the row of people to whom you have spoken. Look at each one for almost a second. As you look, try to make contact with each person. 15. LEAVE THE PODIUM. Turn away from the podium and return to your seat. Optional: You may wish to say thank you before leaving the podium. Notes A Guide to Writing Letters to Public Officials: Contributing to Important Decisions Affecting You and Others 1984 Research and Training Center on Independent Living University of Kansas Lawrence, KS 66045 A well-written personal letter may be the most effective way to communicate with public officials. They want to know how their constituents feel about issues, especially when those issues involve decisions by elected officials. Public officials usually know what lobbying groups are saying about an issue, but often they do not understand how a particular decision affects you. A well-written letter describing your experiences, observations, and opinions may change an official's mind. The same guidelines are also useful for writing to private officials such as business owners, executives of groups like the chamber of commerce, or presidents of corporate boards of directors. These individuals can also make decisions that affect you or the public. You can write two types of letters--positive or negative. A positive letter explains why a decision is or would be good. You should write positive letters about favorable decisions. A negative letter explains your opposition to a pending decision. Writing effective letters builds your reputation as a thoughtful person in the eyes of officials and makes your criticisms more influential. This guide is designed to help you prepare effective letters. It includes examples of a positive letter and one that criticizes a pending decision. Specific steps for writing an effective letter are also described. Then, you will write your own letter. The following letter supports a proposed policy change Honorable Mayor Robert A. Hersch: I am a disabled American veteran who uses a wheelchair. Despite my disability, I drive my own van, as many other disabled citizens do. So, as you may imagine, I was pleased to hear that the City Commission was considering a proposal to strengthen the handicapped parking ordinance. The new ordinance is designed to help keep the designated handicapped parking space on both public and private property open for use by disabled persons. The proposal has already led to publicity about the problems citizens with disabilities have getting a convenient place to park. This has increased the sensitivity of the general public. Further, an occasional $25 ticket ought to keep those important spaces open for those who need them. For me, this new ordinance will mean that I can drive anywhere in town I need to go and have a fair chance of being able to park and go in. The latest census statistics indicate there are over 1,200 people in our community who are similarly affected. Your votes on the architectural accessibility ordinance in the past have demonstrated your support for disability issues. I urge you to vote in favor of the new parking ordinance. If there is any way I might be of assistance, please don't hesitate to call on me. Thank you for your support. Sincerely, Gary Hardage 14 Cottage Avenue The following letter opposes a proposed zoning change. Honorable Mayor Robert A. Hersch: I own a home and live in the west side of town. I am writing to express my concern over the proposed down zoning of my neighborhood. It is my understanding that this new zoning ordinance will bring more people into the neighborhood and force property values down. Reducing the zoning level will allow developers to build apartment buildings and stores in among the older family homes already here. This will clearly bring more people into the neighborhood increasing traffic, noise, and crime. The value of my house is its value as life insurance for my children and my retirement fund. If it declines in value, so does the security of my family. In addition, more crowding, more traffic, more noise, and crime would be extremely upsetting to the many elderly residents in the neighborhood. You have always been sensitive to the preservation of the unique character of our neighborhoods and maintaining the family strengths of our community. I urge you to vote against this zoning issue. Zoning in our neighborhood should remain as it is. Those wishing to build apartments, rather than new homes, have many alternatives more appropriate than this from which to choose. If I can help in any way to defeat this proposal, let me know. Thank you. Sincerely, Mary K. Sterner 1001 Park Walk Road Preparing Your Letter The following guidelines are offered to help you write an effective letter. Keep in mind that you can write a positive letter that explains why a decision is or would be good (a recommended practice after a favorable decision) or a negative letter that explains your opposition to a pending decision. Use the blank spaces to write what you want to say in your letter. A. DECIDE WHOM YOU WILL WRITE. Get the name, title, and address of the highest official who has authority and responsibility for a decision. Example: The city's mayor is the highest official with authority over zoning issues or parking ordinances, such as the ones described in the sample letters. A corporation's executive president might have the final say over whether a new business office is accessible to disabled persons. A state human service agency's director might be responsible for the way services are provided. YOU MIGHT WRITE TO: B. WILL THE LETTER BE POSITIVE OR NEGATIVE? A positive letter would explain why a decision is or would be good. A negative letter would explain your opposition to a pending decision. THIS LETTER WILL BE: 1. OPEN THE LETTER. If you are writing to an elected official, show respect for the position by using the term "Honorable," the title of the office, and the official's full name. In any other letter, use the familiar term "Dear," the title Mr., Mrs., Ms., or Dr., and the official's full name. Examples: "Honorable Mayor Robert A. Hirsute: " "Dear Dr. Frederick Marsh: " YOU MIGHT ADDRESS YOUR LETTER: 2. WRITE SOMETHING ABOUT YOURSELF. Example: "I am an art lover. However, I have never been able to get my wheelchair into the city Art Museum." YOU MIGHT WRITE: 3. TELL WHY YOU ARE WRITING THIS LETTER. State why you are concerned or pleased that a particular decision is being considered. Example: "I am writing to let you know how pleased I am that you are considering using revenue- sharing funds to make the museum accessible." YOU MIGHT WRITE: 4. SUMMARIZE YOUR UNDERSTANDING OF THE ISSUE (DECISION) BEING CONSIDERED. State the general impact you expect, if a particular decision is made. Example: "I believe that this change will make it easier for many people in our community to enjoy art. " YOU MIGHT WRITE: 5. TELL WHY YOU THINK DECISION SHOULD OCCUR. Describe in detail why you feel the decision made will lead to the impact you foresee. Example: "The proposed installation of wheelchair ramps for the front entrance of the museum will make it possible for me to get into the building to enjoy the exhibits and plays. " YOU MIGHT WRITE: 6. TELL WHAT ANY CHANGES MEAN TO YOU PERSONALLY. Describe decision's positive or negative effects for you. Examples: "These changes will make me feel that I am truly a part of our community." YOU MIGHT WRITE: 7. IF YOU THINK OTHERS WILL ALSO BE AFFECTED, IDENTIFY THEM. Tell the official who and how many other people will be affected in the same way. "The latest census statistics indicate there are over 1,200 people in our community with mobility impairments. All of these individuals are similarly affected." YOU MIGHT WRITE: 8. ACKNOWLEDGE PAST SUPPORT. Tell official about appropriate actions and decisions she or he has made in the past. Example: "You have always been sensitive to the needs of all community residents. YOU MIGHT WRITE: 9. DESCRIBE WHAT ACTION YOU HOPE THE OFFICIAL WILL TAKE. State specifically what action you hope the official will take--what you would do in his or her place. "I urge you to vote in favor of using revenue-sharing funds to improve accessibility." YOU MIGHT WRITE: 10. IF YOU HAVE WRITTEN A LETTER THAT OPPOSES SOME ACTION, OFFER AN ALTERNATIVE. Tell the official what decision or action you believe would be best. Example: "The zoning in our neighborhood should remain as it is. Those wishing to build apartments rather than new homes have many alternatives more appropriate than this from which to choose." YOU MIGHT WRITE: 11. IF YOU HAVE TIME AND YOU ARE COMMITTED, ASK HOW YOU CAN HELP. Tell the official that you would be willing to volunteer your help. Example: "If there is any way I might be of assistance, please don't hesitate to call on me." YOU MIGHT WRITE: 12. CLOSE YOUR LETTER. Thank official. Example: "Thank you for your thoughtful consideration of this important matter." YOU MIGHT WRITE: 13. SIGN THE LETTER. Sign your full name and write your address. A Guide to Writing Letters to the Editor: Expressing Your Opinion to the Public Effectively Tom Seekins and Stephen B. Fawcett 1984 Research and Training Center on Independent Living University of Kansas Lawrence, KS 66045 One way to express your opinion publicly is through a letter to the editor in your local newspaper. While every letter may not be published, editors pay attention to well-written letters. This is especially true when there are many letters written on the same topic. In turn, elected officials are also influenced by letters newspapers have chosen for publication. This guide will help you prepare an effective letter to the editor that expresses your opinion on an issue. It includes two letters about a controversial issue and specific guidelines on how to prepare a successful letter yourself. After you read the guide, prepare a letter yourself. Let a friend read it for clarity. Be sure to sign the letter and list your address-newspapers will not publish anonymous letters. Your letter can be positive, negative, or informative in tone. It can also be emotional or objective. But it should be simple and short--rarely more than 300 words. And, of course, it should reflect your true opinions. Here is an example of a letter supporting a proposed program. Dear Editor: The big jump in the cost of heating a house has me concerned. I just got my utility bill in the mail, and I was shocked. Even though the weather has been mild, this bill was as high as any I have seen. I'm worried that some of my friends won't be able to pay their bills when it gets really cold. If I'm not lucky, I may not be able to pay my bill. I want to praise our elected officials for having the courage to try to do something about this problem when other cities and the state government won't, because they're afraid of politics. The life-line utility program is a good idea whose time has come. It's getting cold now. We can't afford to wait for every legal opinion in the state. I believe the city should act before it's too late. Sincerely, Tom Seekins 1400 New York Anytown, USA 04521 Here is an example of a letter opposing the same program. Dear Editor: The City Commission is considering increasing everyone's gas utility bills to create a subsidy program for the poor. I am able to pay my own way on a small, fixed income. I haven't used my furnace yet this winter, preferring to wear three woolen sweaters. I am saving so that I can pay the proposed 38 percent increase in gas bills when it REALLY gets cold. I called City Hall to protest and was told, ever so gently, that I was one of those who would be helped by the subsidy. Absolutely not! No self-respecting oldster would accept a dole extorted from other struggling citizens. The churches have prime responsibility in this area. Churches are close to the source and are in a position to locate those actually suffering in the cold. I am outraged by the proposal to the City Commission. Mrs. A.B. Tony 543 South Ave. Letter Preparation Guide This guide is designed to help you write a letter to the editor on some issue that concerns you. Read the general activities and examples, and then complete the form. Use the blank spaces to write what you want to say in your letter. 1. OPEN THE LETTER. Get editor's name and address from editorial page. YOU MIGHT ADDRESS YOUR LETTER 2. TELL WHY YOU ARE WRITING THE LETTER State the problem or issue that concerns you. Example: "The big lump in the cost of heating a house has me concerned. I just got my monthly bill in the mail, and I was shocked. Even though the weather has been mild, this bill was as big as any I've seen." YOU MIGHT SAY: 3. TELL WHY THIS IS IMPORTANT. Tell how the problem or issue affects you or others, or tell what will happen if something isn't done. Example: "I'm worried that some of my friends won 't be able to pay their bills when the weather gets really cold. If I'm not lucky, I may not be able to pay my bill." YOU MIGHT SAY: 4. PRAISE OR CRITICIZE WHAT SOMEONE HAS SAID OR DONE ABOUT THE ISSUE. Make a positive or critical statement about a public action related to the issue. Example: "I want to praise our elected officials for having the courage to try to do something about this problem." YOU MIGHT SAY: 5. TELL WHY THIS IS GOOD OR BAD. Explain your view about why the particular action or comment is good or bad. Example: "Other cities and the state government won't face the problem because they're afraid of the politics." YOU MIGHT SAY: 6. STATE YOUR OPINION ABOUT WHAT SHOULD BE DONE. Explain what you think would work. Example: "This life-line utility program is a good idea whose time has come." YOU MIGHT SAY: 7. MAKE A GENERAL RECOMMENDATION. Say what should be done, by whom, and when. Example: "I believe our elected officials should do something." YOU MIGHT SAY: 8. SIGN THE LETTER. Sign your full name and write your address. 9. ADDRESS THE ENVELOPE AND MAIL THE LETTER. You can find the address of your local newspaper on the editorial page or by calling your local public library. THE NEWSPAPER'S ADDRESS IS: . CONSUMER INVOLVEMENT IN COMMUNITY ADVOCACY ORGANIZATIONS Volume 1: Monitoring Events and Reporting Issues Tom Seekins, Fabricio Balcazar, Stephen B. Fawcett Research and Training Center on Rural Rehabilitation University of Montana University Affiliated Program University of Illinois Department of Human Development and Family Life University of Kansas Funds for this publication were provided, in part, by a grant to the Bureau of Mental Health, Department of Health and Welfare, state of Idaho, by a contract with the National Institute on Mental Health. This material is an adaptation of material originally developed by the Research and Training Center on Independent Living at the University of Kansas under a grant from the National Institute on Disability and Rehabilitation Research (#GO08006928). Table of Contents Acknowledgments 3 Preface 4 Foreword 5 PART I - An Introduction to Consumer Involvement in Advocacy Organizations 8 Lesson 1: An Overview of Consumer Involvement 9 Lesson 2: Organizational Considerations for Consumer Advocacy Organizations 15 Lesson 3: Etiquette for Consumer Involvement 22 Part II- Monitoring Events and Reporting Issues 26 Lesson 4: Sources of Information 30 Lesson 5: Identifying Issues 35 Lesson 6: Selecting Relevant Issues to Report 46 Lesson 7: Developing Clear Goals and Suggestions for Action 58 Lesson 8: Reporting Selected Issues to your Group 67 Acknowledgments Several very fine people contributed to the development of this manual in both the original and current versions. We are indebted to the members of Independence in Action of Lawrence, Kansas for help in developing the original material on which the 1993 version is based. In particular, we wish to thank Barbara Lumley, Lloyd Slocum, Kalen Beaumont, Celia Tebe, Wendy Balfour, Barbara Moody, and Lois Jones. We also want to thank Mona McCoy for her tolerance and cooperation. Staff of the Research and Training Center on Independent Living helped shape and judge the quality of these procedures. We are particularly indebted to Jim Budde, Director of the RTC/EL, who supported this project in good times and bad. Contributors to this version, focusing attention on mental health issues, include Rob Hess, Cynthia Clapper, Richard Schmidt, Janice Atcitty, Ardia Johnson, and Karen Hoekstra. We are grateful to the people of Idaho for this opportunity. As authors and as applied researchers, we are interested in your comments about the utility Preface Citizen participation strategies once focused on making demands on government officials through demonstrations and other militant actions. However, as conditions have changed, other strategies have evolved, too. Supporting positive service, policy, or fiscal changes and potentially beneficial proposals is an important element in successful consumer involvement groups. Many consumer advocacy organizations have made a regular practice of honoring community leaders who contribute to community improvement. Consumer organizations and their members now take more responsibility in contributing to community improvement and cooperating in community planning. The four volumes of this manual collate a broad range of strategies into easily understood guidelines and instructions. FOREWORD Some of us learn early to complain about situations, but very often we don't know how to get organized with others facing similar issues. We are unsure how to plan and take actions to change conditions, or to make decisions and move things forward under our own initiative. That is -we don't know how to take control. Planning, organizing, making decisions, and taking action on situations affecting your life is what some people call "empowerment", and this is what we are trying to learn through the Leadership Academy. This is what advocacy really is about. It is taking. the initiative, developing projects, getting those projects on their way, collaborating with others participating in policy decisions, influencing the budgets at the state and local levels, improving services, creating new services, educating the community. These are some examples of the actions we are looking forward to see you take. It's very important that you take this training opportunity to start working together with others interested in mental health issues. We think that there is no telling how much you are going to be influencing the decision-making process in in this state regarding mental health services. Nobody can predict what is going to happen became your actions will decide the future. It is up to you now. When you come to a group to talk about advocacy, you often wonder, what is it that the group is supposed to be doing? People have very different ideas what advocacy is. For example, the mother of a child with severe disabilities who attended a workshop we conducted recently with a parent group, summarized her idea of advocacy as follows: "I am in a situation where I have to fight with my local school district to address the needs of my son. The way the teachers and school administrators characterized me was as the "witch." Before this training program, I was very negative, criticizing and complaining all the time. And I felt that was my legitimate role. I was never comfortable in that situation, but I thought that was the only way to get what my son needed." Several weeks after the training, the same concerned in came to us and said: "You know what, now I understand that there are other things I can do besides complaining. I complained too much. My problem was that I was just doing that and I was not taking any constructive action." She understood that there was a difference between complaining -- while expecting others to do everything for you - and learning to collaborate with others and taking actions to meet your needs. That is what this training is all about. To complain and criticize is easy. As a friend of ours used to say, "It is easier to cut heads than to make hats." Individuals with mental illness have a lot to teach service providers, public officials, and the public, in general. However, few individuals are naturally equipped to be effective advocates. Like many others, a person who has a mental illness may be concerned about a broad range of issues but be unsure of what to do. Consumers, family members, professionals, and community development experts from around the country have commented on the need for methods and materials to make consumer advocacy efforts easier and more effective. In response to this problem, we have developed several self-help guides. These guides offer a systematic approach to promoting a variety of consumer advocacy programs. OVERVIEW OF THE MANUALS The materials used in the Leadership Academy have been experimentally evaluated. We have had several applications with different groups of individuals with disabilities and family members. We have collected data and modified and adapted the materials with feedback from previous users. We would like your comments and suggestions too. We want these materials to be easy to understand, yet effective. Part I of the manual introduces readers to consumer involvement. Lesson 1 defines consumer involvement and explains the different forms it can take. Lesson 2 presents some organizational considerations and general recommendations regarding legal responsibilities for advocacy organizations. Lesson 3 offers an etiquette course that can be extremely important for the ultimate success of any consumer endeavor. Part II describes how individuals can monitor events and report issues to their group effectively. Lesson 4 describes several information sources that can be used in various ways to identify issues. Lesson 5 discusses eight types of issues that are highly relevant to consumer organizations. These issue types help organize the options for appropriate action. Lesson 6 discusses how to select relevant issues to report to the group. Lesson 7 explains one method to clarify what you'd like the group to accomplish on an issue and also introduces the Project Planning Guide. Finally, Lesson 8 tells how to report issues in such a way that you peak the interest of the group. Each lesson in Part I and II is followed by an exercise. Readers should complete the exercises for each lesson. You should then compare their answers to those in the answer key. These exercises will help group members develop a common understanding of issues and a consistency in their perspective. Such common ground provides a firm basis for group action. Volume II, Leading Effective Meetings, describes how the group discussion leader can chair effective meetings. Lesson 9 describes how to form an issue agenda to get the meeting started. Lessons 10 through 14 show the reader effective ways to open meetings, lead discussions, guide systematic planning, take votes, and close meetings. Volume II also provides instructions for the group secretary on taking the minutes of group meetings. Volume III presents the Project Planning Guide. The Guide lists a sequence of 35 possible actions for each type of issue and goal. The work involved in each action, its goal, resources required for taking the action, and possible costs and benefits are specified. The INDEX permits a consumer group to consider a full range of legitimate responses for achieving a variety of goals. It is intended to balance rational planning with effective citizen action and protect the credibility of its users. Volume IV provides guidelines for proctors, peers, or instructors on how to train group members using this manual. The training package is divided into four training sessions. Evaluation questionnaires are included at the end of this manual. PART I AN INTRODUCTION TO CONSUMER INVOLVEMENT IN ADVOCACY ORGANIZATIONS Persons with mental illness often face obstacles other people never encounter. Historically, people with mental illness have been denied fair treatment in a wide variety of public situations, including education, employment, housing, transportation, and access to public buildings and activities. Many persons with mental illness have also found that their mental illness becomes an obstacle in gaining respect and acceptance in personal situations. Discrimination against people with mental illness has usually been inadvertent or the result of ignorance and insensitivity. Occasionally, however, it can be the result of malice or conflicting interests. In one case, a landlord threatened a woman with a mental illness with eviction, if she did not stop sitting in front of the apartment building. She had been enjoying the summer sun in front of her apartment. Some other tenants had complained that she made the place "look like a flophouse." Because of a basic insensitivity, the other tenants had not accepted their neighbor. The landlord, wanting to satisfy his other tenants, violated the woman's civil rights and her dignity by threatening eviction. Fortunately, conditions have been improving in the last several years. Court cases and legislation have clarified and extended the rights of disabled people. For example, Title V, Section 504 of the Rehabilitation Act of 1973 (Public Law 93 - 112) guarantees equal access to employment, health care, and other benefits, if the provider receives federal assistance of any kind. The new Americans with Disabilities Act (ADA) provides many of the same guarantees in private activities and facilities. Public awareness efforts and increased visibility of disabled people in our communities have begun to dispel general ignorance about mental illness. The existence of these laws does not guarantee fair treatment, nor does the appearance of a disabled person in a television commercial eliminate widespread ignorance and insensitivity. The housing discrimination mentioned above occurred in the "enlightened 80s. " There are many cases each year in which rights or benefits are improperly denied to individuals with mental illness. However, there is one way to assure rights, benefits, and fair treatment, and that is through consumer involvement. LESSON I AN OVERVIEW OF CONSUMER INVOLVEMENT Empowerment has become a major theme in all consumer-oriented movements. One method for promoting empowerment is for consumers to become involved in advocacy organizations. Consumer involvement means individuals with mental illness taking responsibility for helping themselves, improving services provided by service organizations, and improving the communities in which they live. Consumer involvement builds independent living in three ways. First, individuals who are effective consumers of public and private services are more likely to achieve their personal goals for living a more independent life. Second, if consumers participate in service design and delivery, services are more likely to meet consumer needs. Third, public affairs can influence the extent to which all consumers in a community can achieve independent living. The more individuals with mental illness who are effective participants in public affairs, the more likely decisions will be made about community conditions that will facilitate independent living for everyone. Consumers can become involved as individuals or as members of organized groups. For example, an individual with a physical disability might engage in consumer self-help by hiring, training, and managing a personal care attendant. Alternatively, a mental health consumer might report a problem of unacceptable police harassment to an advocacy group of which he or she is a member. This group, in turn, might develop a comprehensive plan to work with city and county governments to address the issue of the legal status of and humane treatment of people with mental illness. Consumer involvement usually focuses on four general levels. First is the individual level, i.e., consumers organizing a peer support group. Second is the service organization level, i.e., consumers constituting an advisory board for a rehabilitation program. Third is involvement at the community level, i.e., promoting jobs for individuals with mental illness in through a mayor's commission on employment issues. Finally, there is the state and national level, i.e., an individual presenting testimony on an administrative proposal to a state's legislature. All four levels can be addressed by individuals or by organized groups. Table 1 provides a convenient way to view consumer involvement. It suggests how individuals and organized groups can be involved at all four levels. Each matrix cell represents a general type of consumer involvement. Table 1 A TYPOLOGY OF CONSUMER INVOLVEMENT Level of Focus Individual Organizational Community State and National Individual Self-Help Participant Citizen/ Citizen/ (e.g., (e.g., Consumer Consumer supportive volunteer, peer (e.g., assertive (e.g., letter writer) housing counselor) recipient of medical or other services) Organized Peer Support Consumer Consumer Coalition Building (support group) Advisory Advocacy (policy (monitor (community development) operations) development) Effective consumer advocates require familiarity with a wide range of consumer-oriented activities. Although many of these activities overlap, the conditions under which they are used differ dramatically. For example, an individual might provide testimony to a legislative subcommittee as a concerned citizen, to a tribal council as a member of a consumer advocacy organization, or to a service program's board of directors as a representative of a consumer advisory group. Thus, understanding how to be successful in one area is likely to improve effectiveness in another. The major purpose of this manual is to describe ways consumers might be more successful at improving service organizations and their community. We hope that understanding more about these two areas will also enhance other areas of consumer involvement efforts. BENEFITS OF ORGANIZED CONSUMER INVOLVEMENT Individuals can be effective agents of change. However, their individual acts can become even more powerful when they are part of an organized effort. Individuals organized into groups to address common concerns have greater resources than most individuals acting alone. A group can allocate individual time and energy to carry out many tasks. This permits more projects to be accomplished with less effort by each person. The relative anonymity of group action also provides some protection against individual risk. Groups also provide natural support that can stimulate interest and participation over a long period of time. Finally, a group provides the strength of numbers that is crucial in convincing others. Of course, the benefits offered by a consumer group have their costs. Groups reduce the freedom of individual action by requiring mutual consent on issues selected and actions taken. This can mean that a group will be slower to act than an individual. Therefore, organized efforts should always be seen as only one aspect of consumer involvement. The shared goal of living a self-determined life provides an excellent context for organized consumer groups. First, the definition of independent living involves control over one's life. Involvement in organized consumer groups is one way to exert and extend that control. Second, although virtually every community needs more mental health services, there are neither enough funds nor professionals to have a mental health center in each community. However, consumer organizations can have substantial local impact, even when there is no funded mental health center. Accordingly, consumers need to know how they can become involved and what methods will help them be effective. ORGANIZING FOR CONSUMER INVOLVEMENT A major purpose of consumer groups is to facilitate independent living in their communities. They can do this by monitoring events in their community and local service organizations, analyzing relevant issues, planning appropriate responses to issues, and taking action. Table 2 illustrates this process. Individuals are best suited to monitor events within a community or organization. They identify relevant issues and report them to their group. The group discusses reported issues and determines appropriate responses. It then uses available resources to implement its decisions. Thus, consumer involvement forms a feedback loop between the community, service providers, and consumers. The remainder of this manual offers instructions on how to complete each of the major activities of a consumer group. Table 2 Consumer Involvement Process CONTEXT INDIVIDUAL CONSUMERS CONSUMER ORGANIZATON Community Events Monitoring Events Discuss Reports Selecting Issues Analyze Issues Reporting Issues Plan Projects Making Decisions Organizational Activities Monoriting Activities Discuss Reports Slecting Issues Analyze Issues Reproting Issues Plan Projects Make Decisions Implement Decisions Implement Decisions EXERCISES: Lesson 1 Fill in the blank. Check your answers with those in the answer key on the following page. 1. Consumer involvement means individuals with mental illness taking _______________ for helping themselves, improving services provided by local agencies, and developing communities in which they live. 2. Consumers can become involved as individuals or as members of organized ________________________. 3. A consumer involvement group can help facilitate independent living in its community by monitoring community events, analyzing relevant issues, and taking appropriate ________________________. 4. Group members should monitor events and report relevant _____________________. 5. Consumer involvement forms a feedback ____________________between the community, service providers, and consumers. ANSWER KEY: Lesson 1 1. responsibility 2. groups 3. action 4. issues 5. loop LESSON 2 ORGANIZATIONAL CONSIDERATIONS FOR CONSUMER ADVOCACY ORGANIZATIONS A frequently asked question about consumer advocacy involves organizational structure. The question can be divided into two parts.' First, what are the organizational standards for advocacy groups, and second, what legal standards should be considered by an advocacy group? ORGANIZATIONAL STANDARDS FOR ADVOCACY GROUPS Standards are explicit statements of an organization's operations, based on members' goals and experiences. They are used to ensure that group decisions are appropriate and made fairly. In any business, government agency, or educational organization, performance standards state goals and define procedures. Table 3 lists some generally accepted standards for consumer advocacy organizations. Not all of these standards are appropriate for every group. However, together they do define an advocacy organization. The importance of such a written document is discussed along with other legal considerations. Table 3 Organizational Standards for Consumer Advocacy Organizations Mission statement Defined membership criteria Specified organizational structure Stated rules of order Agenda formed by consumers Meetings chaired by consumers Statement of relations with advisors (if any) Regular minutes Regularly scheduled meetings Program of active community involvement Program of active service review Organized training Established relations with service program Established linkages with similar other groups Public reporting of projects Mission statement. A mission statement defines the purpose of a group. It can be broad, such as, "Improve the community for all citizens," or narrow, such as, "Provide consumer input on services to the local agency on aging. " The mission statement briefly describes what an organization is designed to achieve. It helps members focus their efforts appropriately and helps others understand what to expect of the group. Defined membership criteria. Membership criteria should state who is allowed to participate actively in the group and how one can become a member. These criteria may also be broad, such as, "Membership is open to all Indian people," or narrow, such as, "All citizens over 60 years old who are receiving service from the Area Agency on Aging are automatically members of the organization." The most important aspect of defining membership is agreeing upon who is allowed to vote on proposals. Specific organizational structure. Organizational structure defines the rules of the group. It states how members and others can participate in group decisions and activities. It specifies leadership roles (e.g., officers), responsibilities of officers, various roles for members, how leaders will be selected, and what decisions can be made between meetings. Without a clear statement of group structure, much time and energy can be spent debating who can vote and what can be decided. This often frustrates members and leads to member attrition. Conversely, a well-organized group uses its energy efficiently, because everyone knows how to use the system to get things done. Stated rules of order. Rules of order should describe how items can become topics for discussion at meetings, how meetings will be run, and how decisions will be made. The standard rules of order are Robert's Rules of Order. But there are many variations. Section III of this manual presents rules of order for the chairperson of a consumer group. As with a specific group structure, rules of order promote efficiency by establishing a standard way of deciding that everyone can understand. Agenda formed by consumers. The meeting agenda defines issues of importance to the group. Although nonmembers may be permitted to raise issues, agenda items should come primarily from members. This manual is designed specifically to help members learn how to identify important issues to raise with their group. Specific methods for forming an agenda are discussed in Section III, Lesson 1. Nonmembers should be allowed to discuss issues only at the discretion of group members. Meeting chaired by consumers. As important as the agenda is, chairing organizational and committee meetings is an important leadership opportunity and symbol for consumer advocacy organizations. It is an important mechanism for demonstrating that consumers control the direction of the group. This manual also shows how consumers can conduct effective meetings. Statement of relations with advisors. Many groups are organized as part of a service organization or broader advocacy effort. This often leads to advisors, liaisons, or technical assistants participating in the group. Since these participants often have their own agenda, it is important that the group's relationship with an advisor be specified. This helps avoid misunderstandings about who is responsible for decisions or whose interests the group should serve. Regular minutes. Minutes are the record of a group's business and a guide for action. it is important that accurate, complete, and publicly available minutes of each meeting be kept and publicized. Minutes should record who is in attendance, date of the meeting, issues discussed, and decisions made. Minutes are the legal record of a group's decisions, so they must be accurate. The minutes should note the names of any members voting in opposition to any motion. Minutes help inform members not in attendance about group decisions, act as a record for future action, and provide a group history. Minutes should be retained indefinitely. Part VI of this manual provides a simple framework for managing such group records. Regularly scheduled meetings. Meetings are the heart and soul of voluntary consumer organizations. Meetings permit the group to develop consensus on issues and commitment to projects. They allow members to share information and develop a common perspective on their community. Infrequent meetings reduce the efficiency of the group, because there are delays in taking appropriate action on important issues. Or, only a few members end up making decisions. Too frequent meetings exhaust the membership. Most groups handle this dilemma by organizing committees to address issue details between monthly meetings. Program of active community involvement. A primary goal of consumer advocacy groups is to improve community conditions. One approach is to have a program of active community involvement. This may involve an organized system of monitoring community events and reporting them to the group, a structured committee that reviews community events and develops recommendations for, the group, or members who attend meetings of public bodies as observers or participants. A specific program of regular and active involvement provides multiple roles for group members and develops a reputation for involvement that leads to respect for the group. One model for such a program is used by the League of Women Voters. It is referred to as an Observer Corps. Individual members are assigned "Portfolios." A portfolio is a packet that identifies the organization one is assigned to observe and explains its general importance to the group. A portfolio may also contain a letter of introduction for each new observer to the chairperson of the organization being observed. It may also contain special instructions, such as not to take positions or comment publicly on the organization's actions without group approval. Program of active service review. Many consumer advocacy groups have a special interest in one or more service organizations. Occasionally, groups have a specific relationship with a service organization that involves providing consumer advice. The consumer group should state the specific methods it will use to monitor services and provide consumer input. When possible, these methods should be negotiated with service providers. Formal relations with a service agency . Some advocacy organizations are affiliated with service organizations. Such affiliations are mutually beneficial. The consumer group provides legitimacy and support to the agency, and the agency provides limited resources to the advocacy organization. When there is a relationship of this nature, all matters should be. carefully negotiated and clearly detailed. If there are liaisons exchanged between the groups, these individuals should be carefully selected and their roles (e.g., voting rights) clearly stated. This will help avoid confusion over whose interests are served and how the agenda of the groups should be formed. Established linkages with other similar groups. Within any community, there are many groups that address similar issues for different populations. It is often possible to cooperate on these issues. To do so requires some familiarity with one another. This may be accomplished by exchanging liaisons or "ambassadors," exchanging newsletters and minutes, or holding occasional joint meetings. Such cooperation will enhance the reputation and effectiveness of each group. It will also alert both groups to issues they may not otherwise uncover. Organized training . The nature of a voluntary consumer group means that many new members lack advocacy experience. To ensure the effectiveness of the group and its long-term survival, it is important to provide training to new members and improve the skills of regular participants. Organized training also permits full participation by members in group business and facilitates consumer control of the group. This manual is designed to teach consumers the basics of organizing and operating a consumer advocacy group. In addition, several other sources are listed for additional training. Public reporting of projects. An advocacy organization should practice open communication with its membership and the public. This may be accomplished in several ways, including regular distribution of group minutes, articles in newsletters, circulation of a group newsletter, and press releases. Such public reporting increases the chances potential members will become aware of the group. It also enhances the reputation of the group and leads to contacts from others. The manner in which a particular, group addresses these standards and other goals is often found in a written charter or bylaws. Such a written document helps avoid capricious changes and establishes -the groundwork for an organization's legal status. LEGAL CONSIDERATION Advocacy organizations are held to the same legal standards as any other organization, and their members are held to the same legal expectations as other citizens. There are, however, several special considerations for voluntary advocacy organizations. These include fund raising and spending, individual liability, and organizational liability. Many of these considerations can be viewed from the perspective of whether to associate or incorporate, and if the decision is to incorporate, whether to seek nonprofit status. The best way to make these decisions is to consult a local legal authority. Some of the general issues, however, are discussed below. Association. An association is a group of individuals who agree to work together on various issues or projects. They may agree to certain rules, guidelines, or procedures, but the group, as an organization, has no true legal status. Generally, a consumer advocacy association can emerge in two ways. First, an established service organization or state advocacy organization might sponsor a local group. Second, individuals with common interests might simply come together to address those issues. The benefits of an association include the limited amount of effort required to initiate it. If the association is successful, it might later apply for independent legal status as a corporation. One problem of such associations, however, is that those sponsored by another organization lack independence. Another problem is that they may not get the same respect given to independent, incorporated organizations. Such associations may also find it hard to raise and manage funds, since they lack corporate status. Incorporation. A corporation is a legal creation. It is a group of individuals who secure the right to act together as a legal body. Incorporation requires filing legal applications, usually with the Secretary of State of a state, and compliance with accepted practices of corporate law -most often involving financial matters. Once granted, a corporation can take any action consistent with its charter or bylaws, including lobbying. Corporate status provides some protection for individual members of an organization from legal action taken against them because of actions of the organization. It also makes it easier to raise and manage funds, because there is some assurance to contributors that contributions will be handled appropriately. However, funds raised by a corporation are taxable, and thus, contributions made to the corporation are not tax-deductible. Nonprofit status. Nonprofit status refers to Section 501.C3 of the Internal Revenue Code. It means that none of the "profits" of the organization will accrue to its members. Nonprofit status is achieved by applying to the IRS. The procedure can be difficult and time consuming. It is almost always a good idea to get legal help. Nonprofit status allows a corporation to collect money without it being taxed. It also permits those making contributions to the organization to take a tax deduction on personal taxes. However, nonprofit status places a number of restrictions on an organization. For example, although nonprofit corporations may engage in public education activities, they may not lobby. The precise distinction between educational activities and lobbying is not clear. This ambiguity may leave a group uncertain of its rights or open to punitive action by others who may oppose its positions. CONCLUSION There are many ways to structure a consumer advocacy organization. In general, the organization should be controlled by consumers, it should specify its goals and methods, and it should develop clear linkages with others in the community. A consumer advocacy organization should address several legal issues that affect its operation. The best way to do this is to seek advice from a local legal authority. Often, this advice may be given to such a group free of charge (pro bono) from a local lawyer or from the local bar association. EXERCISES: Lesson 2 1. Check the standards your group meets. ___Mission statement. ___Defined membership criteria. ___Specified organizational criteria. ___Stated rules of order. ___Agenda formed by consumers. ___Meetings chaired by consumers. ___Statement of relations with advisors (if any). ___Regular minutes. ___Regularly scheduled meetings. ___Program of active community involvement. ___Program of active service review. ___Organized training. ___Established relations with service agency. ___Established linkages with similar other groups. ___Public reporting of projects. 2. What legal form does your organization have? ___Association. ___Corporation. ___Nonprofit status. LESSON 3 ETIQUETTE OF. CONSUMER INVOLVEMENT Consumer groups exist to promote a broad set of values in their communities. Among the many values that consumer involvement groups share are such principles as fairness, equal access, equal opportunity, independence, community integration, social acceptance, safety, dignity, and consumer control. Issues involve the application of these principles in everyday situations. For example, a policy change can have positive or negative effects on the principle of community integration. The general goals of a group are to support positive changes, prevent negative changes, or develop new ways of enhancing these principles. But the approach you take can significantly influence the degree of success you achieve. This lesson describes 10 guidelines that have led others to successful efforts. TEN GUIDELINES FOR PRUDENT ADVOCACY The type of projects your group chooses will contribute to its reputation in the community. Since your group is likely to address many issues over a long time, its reputation is a key to success. The following guidelines have emerged as characteristic of many successful advocacy organizations. This list is by no means complete, but it may serve as a basis for healthy community advocacy. Accentuate the Positive. Respond to at least as many positive events as negative ones by complimenting positive actions and honoring key figures. Keeping positive is easy, and it will win you friends and build your reputation as being a reasonable group. Constructive involvement can serve as the basis for many successful projects. Begin by assuming the best of others. Challenging the motivations of others often produces needless resistance. Assuming a negative act is the result of ignorance or inattention (maybe even your own) creates opportunities to teach and learn. A corollary is to give credit freely for beneficial decisions. Acknowledging the wisdom and vision of others who support you is likely to increase their commitment to your goals. Do your homework and document everything . If your group takes a position or initiates an action based on an error in fact, you stand a good chance of being very embarrassed. Such embarrassment can damage a hard-won reputation. A significant error in fact can also direct attention away from your issues, no matter how important they are. Thus, the first step in developing a position or a project should always involve confirming your information. In addition, you should document everything you do as well as what others tell you. Documentation protects you from denials and counter chargers. Take the high ground. When you take a position on an issue, always highlight the general values or principles you are promoting, such as independence, equal access, well being, dignity, or safety. The importance of these values and principles is hard for anyone to deny. They serve as a firm basis for agreement on general community goals. They help prevent personality conflicts stemming from disagreements over details of solutions. And finally, positive values lend an air of eloquence to your position that will impress almost anyone. Take a broad perspective. Although a consumer group is usually too small to act on every relevant issue, it is wise to spread your attention across different issue types over time. Various issues are likely to share many similarities. A group that focuses only on transportation issues will have a narrow appeal to members and the public. Addressing issues of integration broadens appeal and generates more opportunities for involvement. It probably increases opportunities for success, too. Plan many small successes. Groups are more likely to grow and maintain themselves over time, if they have many successes. One way to facilitate success and growth is to have many small projects rather than one major one. Many successful efforts over time will build the competency and reputation of the group so that it can take advantage of major opportunities more effectively. Begin with the simplest step. If an issue is personally important, members tend to want to make an immediate, strong response. This approach can seriously restrict your options and those of others who support you. Radical actions should usually be saved as options until other, less intrusive steps have been tried without success. Be prepared to follow through. Once you have begun to address an issue, be prepared to follow through. This means you should be ready to compliment responsiveness, attend meetings, compromise, or escalate your approach, if there is no response. Some situations may become intolerable, and you should not seek to avoid conflict at all cost. If you don't follow through on your current efforts, others will be likely to ignore your future efforts. Be reasonable. Developing a quality community requires cooperation and compromise between groups with competing interests. Public support is almost always on the side of those who are most reasonable in their approach and demands. Action that offends interested parties -- especially the public -- decreases the chances for cooperation and success. Be prepared to accept success. Success might best be viewed as progress toward an ideal rather than capitulation by the enemy. You should advocate for your own proposals, but you should also keep an open mind for alternatives and compromises offered by others. They, too, have legitimate goals and need some control over their situation. Moreover, their knowledge of the workings of systems you may not understand might lead to greater success than you imagined. A mutually acceptable solution to a problem is a success for everyone. Your willingness to help others win will contribute to a strong group reputation. EXERCISES: Lesson 3 Fill in the blanks. Check your answers with those in the answer key on the following page. 1. Advocacy groups exist, in part, to promote a broad set of values in their community, including such principles as fairness, equal access, independence, opportunity, community integration, social acceptance, safety, well being, dignity, and consumer control. What values and principles do you feel your group should promote? __________________________ 2. The general goals of a group are to support changes, prevent negative changes, and develop new ways of enhancing its values. 3. A good reputation is the key to ___________________________. 4. Accentuate the ______________________. Respond to at least as many positive events as negative ones. 5. Take the _____________________ ground by referring to the general values and principles you believe are involved in an issue. 6. Plan many small ________________________. 7. Begin with the __________________________ step. 8. Assume the ______________________________ of others. ANSWER KEY: Lesson 3 1. There are no right or wrong answers. You will have to consider each issue carefully, and examine your beliefs in relation to it. 2. positive 3. success 4. positive 5. high 6. wins 7. simplest 8. best PART II MONITORING EVENTS AND REPORTING ISSUES There are three general types of information shared during consumer group meetings: issues, announcements, and general discussion topics. Each has its place in a meeting. Of the three, however, issues are the most important and the most difficult to handle. The following lessons describe sources of issues, how to identify them, what makes issues relevant, how to develop goals and objectives, and how to report issues to a group effectively. ISSUES DEFINED Issues are the fuel of active consumer groups. Members supply the fuel by monitoring local events and reporting issues. Without issues, a consumer group cannot get started or keep going. Viewed from a distance, a community or an organization is a buzz of events. Many of these events may have little or no relevance to your group. Some do. The job of a monitor is to identify and report events that suggest relevant issues on which your group should act. In general, issues are community events to which your group can and should respond. Issues can be both positive and negative. For example, the hiring of an additional mental health counselor at the tribal health center may be most important achievement for that organization during the year. This extremely positive event is as much of an issue as the long wait to obtain medications from the Indian Health Service pharmacy. To be successful, a group must support positive changes as well as oppose negative ones. You can tell an issue from an announcement or general discussion item by asking if it is a situation in which systematic group planning and action are appropriate. For example, a decision by the city-operated bus company to eliminate a key route to a consumer center is an event to which your group can and probably should respond. On the other hand, an invitation to group members to attend a civic event is an announcement - an event members might be interested in attending but not one calling for careful planning or group action. A national study concluding that sufficient funds are not being allocated for research on mental illness is a general discussion topi -information that may draw a few members into a discussion but not something the group is likely to tackle as a project. As an observer, you should focus your attention on finding and reporting issues. The next four lessons and the accompanying exercises are designed to help you become familiar with information sources about issues, how to identify relevant issues, how to develop action suggestions, and how to report issues effectively. Later sections address ways a group can analyze issues and any actions they might take. We will follow two groups through the course of these lessons, Community Improvement for the Mentally III (CIMI) and Consumer Advocates in Action (CAA). However, the lessons are also applicable to neighborhood service centers, self-help groups, and other consumer-based organizations. EXERCISES: Part II Fill in the blanks with the correct answers. Check your answers with those found in the answer key. 1. There are three types of information consumer group members want to share: ________________, announcements, and general-discussion topics. 2. As an observer, you should focus your attention on finding and reporting _________________________. 3. Issues can be both ____________________ and negative. 4. In general, issues are ____________________ events to which your group can and should respond. 5. To be successful, a group must __________________ positive changes as well as opposing negative ones. 6. Without issues, a group simply __________________________get started or keep going. 7. The job of a monitor is to identify and report relevant issues on which the group should _____________________________. ANSWER KEY: Part II I. issues 2. issues 3. positive 4. community/local 5. support 6. cannot 7. take action/systematically plan LESSON 4 SOURCES OF INFORMATION Consumer groups monitor events at two levels, organizational and community. Organizational monitoring involves overseeing the operation of an organization of which you may be a part. For example, the consumer advisory committee of a mental health center may want to monitor the center's policies and activities. Likewise, a consumer advisory committee for a case management program may want to monitor the program's response to unmet needs. Monitoring agency activities provides you with an opportunity to support or suggest changes regarding the center's activities. The second area most groups may want to monitor is local community affairs. For example, a consumer advocacy committee of a mental health center could monitor the city commission to alert their group about any actions that affect their organization. Monitoring community events provides group members opportunities to become active in civic affairs and promote changes that facilitate independent living, acceptance, and integration. There are a number of useful information sources about the policies and operations of an organization, including your own experiences, comments from others, minutes of the board of directors, staff reports, grant proposals and contracts, press releases, and budget documents. Simply by asking, you can get copies of documents or be put on a mailing list to receive regular copies. Because they are almost always part of the public record. you cannot be refused reasonable access to these important documents. Sometimes you may have to make a written request. To get these documents it is important to identify a specific person who can provide you with the kind of document you need. For example, you might contact the president of the board of directors to get on the routing list for board - There are other information sources about community affairs. They include: your own observations, comments of others (e.g., rumors ) local newspapers radio reports, television reports, reports from organizations, committees, commissions, newsletters, brochures from other organizations, and issue papers or study reports released by other organizations. These and other sources of information are also part of the public record. Copies can often be found at local agencies or the public library. You may also be able to get a regular routing of such documents by asking for them by subscribing to some of them ( e.g. the newspaper). The following are examples of how one might use these information sources to identify important issues. Listen to comments from others . Note any positive or negative remarks you may hear from others about community events, or any of the staff, programs, or projects of the organization you monitor. For example, a neighbor might mention that her daughter told her that some of the classes at her school will be studying mental illness as part of Mental Illness Awareness Week. This is an effort your group may want to support by providing a written compliment. Or, you might hear a friend complain that she has not been able to get help finding an apartment that she can afford. This is an unmet need about which your group may want to take action. Comments from friends, neighbors, and consumers are valuable sources of information about your community and the services provided by community organizations. Being responsive to others increases the chances that people will share information with you. It also increases the chances that people will speak highly of your group to others. Consider your own experiences. Note your own positive and negative reactions to community events, services you've received, or observations about your organization. You might hear a broadcast on a radio program that refers to persons with mental illness "psychos, stupid, zombies, cripples, loonies, crazies, and whackos." This offensive public remark may lead your group to provide corrective feedback to the radio station manager. Another example may involve your experience as an American Indian trying to obtain mental health services, and being referred to several separate agencies, instead of being able to obtain help in one place. This may represent an unresponsive policy or procedure that your group may want to criticize. Your personal experiences and judgments are indisputable evidence. Bringing compliments and complaints you have to the attention of the group may help you deal with a situation effectively. It may also help others describe similar experiences they have not been able to talk about. Scan the newspaper. This involves reading local newspaper stories to identify reports that relate to your group. You might read that the tribal council is considering hiring an architect to do a feasibility study and preliminary design for a proposed low income housing. This might be a project on which your group may want to request participation. The newspaper is important, because it contains so much local information. Some sections of the newspaper are more likely to contain issues relevant to your group than others. You may want to look carefully at these sections. For example, the front page usually summarizes the most important daily events. You might pay particular attention to local events reported on the front page. Most papers have a special section devoted exclusively to local and regional events. You should also look at the editorial page. Some letters to the editor can give you an idea about community reactions to current controversial issues. Reports of meetings or local boards and commissions, such as the city commission, county commission, and tribal health board, often contain issues relevant to your group. Use your newspaper to track local current events so you will be informed about various positive and negative events to which your group might want to respond. Scan organizational newsletters. This involves reading the newsletter of your organization or other organizations and noting the main events reported. You might note in your organization's newsletter that there are requests for volunteers to help make telephone calls for a study. This might be a project you may want to help complete. Using newsletters as a source of information is important, because you might discover things your organization or other organizations are doing that affect you. This permits your group to facilitate or oppose what's being done. Review minutes of the board. Read the minutes of the board of directors of organizations that are intended to serve members of the group you represent. Note proposals, announcements, and/or changes about the activities of the organization. You might note from reading the minutes of a center's board that there has been a change in transportation policy. The new policy states that you can get transportation to the center but not from the center back home. Group members might want to criticize this policy because of the inconvenience it creates. Using minutes as an information source helps you to be aware of what's going on within local service agencies. Precise, up-to-date information allows the group to support, oppose, compliment, or change your organization's activities. In summary, these and other sources will be useful in providing you with important information about your community and your organization. SUMMARY OF SOURCES OF INFORMATION - Listen to comments from others - Consider your own experiences - Scan the newspaper - Scan organizational newsletters - Review minutes of the board EXERCISES: Lesson 4 List sources of information you might use to monitor organizational events and community affairs. Then get a copy of these sources to review while you study the following sections of the manual. Organizational sources 1. ______________________________ 2. ______________________________ 3. ______________________________ Community sources 4. ______________________________ 5. ______________________________ 6. ______________________________ 7. Consumer groups monitor events at the organizational and ____________________ level. 8. What is the purpose of monitoring organizational activities? _______________________ ______________________________________________________ _________________ ______________________________________________________ _________________ 9. What is the purpose of monitoring community events? ___________________________ ______________________________________________________ _________________ ______________________________________________________ _________________ ANSWER KEY: Lesson 4 1. newsletters 2. board minutes 3. annual report 4. newspapers 5. radio and T.V. 6. your own experiences 7. community 8. Monitoring organizational events provides a chance to support or suggest changes in agency programs. 9. Monitoring community events provides opportunities for members to be involved in civic affairs and promote changes that facilitate independent living. LESSON 5 IDENTIFYING ISSUES A major task of active consumer groups involves reviewing information sources issues. In general, issues are actions by others that affect your group in important ways. Issues can involve both positive and negative events. It is as important to react to positive events as it is to respond to negative ones. There are six major issue types that observers should monitor. Each of these types suggests one or more group goals. The Situation/Goal Chart presented below shows the relationship between issue types and goals. For example, a group goal in response to a positive service change might be to support the change. The relationship between issue types, goals, and possible actions the group may want to take is explained in Lesson 7. This lesson describes issue types in detail and provides several examples of each. Exercises to help you practice choosing issues from announcements and other interesting information are provided at the end of the lesson. ISSUES/GOAL CHART SITUATION/ISSUE TYPES Good News . Positive changes in service, policy or budget allocation; and potentially beneficial proposals. GENERAL GOALS Reinforce . by supporting, encouraging complimenting, facilitation, honoring. Contradictory Information Rumors, complex issues, incomplete or confusing information. Investigate by conducting studies, analyzing, documenting, clarifying, revising, UNMET NEEDS Develop a Solution by expanding existing services or new options or programs. Bad News Negative changes in service, policy, or budget conditions; an potentially harmful proposals; unresponsiveness; offensive language or action; discrimination. Oppose by criticizing, educating, complaining, and proposing alternatives. Watch for changes in services or practices. Note any improvements or decrements in services necessary for members of your organization. A member of Community Improvement for the Mentally III (CIMI) might hear from a friend who lives on a nearby reservation that a service coordination committee - including Tribal Health Social Workers, Tribal Police, Tribal court, and their community counterparts - had stopped meeting. Over the past three years this committee had significantly improved responses to crisis situations. Without it, confusion and distrust might return. This is a change in practice CM might want to investigate. Similarly, the minutes of the board of a mental health center might report that the more case managers will be available on weekends. This is an event CAA may want to compliment, because it provides individuals with a mental illness with greater access to services. Noting improvements or decrements in services provides your group with information about actions it may want to compliment, criticize, or take action of its own to change. Watch for changes in policy. Note any proposal to change an organization's goals and objectives. A member of CAA might read in the mental health center's newsletter that the board of directors has decided to make it a policy that a staff member must be present at all meetings held in any of the center's facilities. This is a change in policy the group may want to criticize and monitor closely. In another example, a newspaper story may report that certain insurance companies are changing their policy to provide more comprehensive coverage of treatment for mental illness. This is a new policy CAA may want to compliment by writing letters to the insurance companies and the newspaper. . A special type of policy involves the rules for making decisions. For example, a state housing task force may decide that consumer comment is not necessary before allocating housing trust funds. Consumer advocacy groups might want to protest this arbitrary action. Noting policy changes provides you with an opportunity to compliment, criticize, oppose, or facilitate these policies. Rules for making decisions are intended to maintain a fair and open decision process. Watching for changes in the rules helps promote and protect fairness. Watch for changes in budget allocations . Note my increases or decreases in a program's budget or allocations from community funding sources. A member of Community Improvement for the Mentally Ill (CIMI) might note in the minutes of the tribal newspaper that the tribal council is seeking funds to increase the availability of mental health services on the reservation. This is a move CIMI might want to compliment through a letter to the tribal council and Indian Health Service. In another example, a member of CAA might note in the newspaper that the legislature has increased the budget of the community mental health program. This is a budget allocation the group may want to compliment publicly by writing a letter to the editor of the paper. Noting budget allocations like these provides you with an opportunity to examine individual needs as well as a chance to suggest group needs that might be overlooked by planners and decision makers. Look for proposed changes . Identify potentially beneficial or harmful proposals by others to change rights, entitlement, or obligations.' The minutes of a tribal council meeting show that tribal leaders are considering changing the definition of who is eligible to be a tribal member, which in turn might affect who is eligible for tribal health services. The CAA might want to follow this proposed decision closely. In another example, a member of CIMI might note a newspaper story about a proposal by a rural hospital to consider developing a portion of its space for services to people experiencing a mental health or emotional crisis as an alternative to holding them in jail or sending them to a state facility. This is an issues CIMI might want to endorse. They may also want to seek greater involvement in the program's development. A special type of proposal involves changes in the rules for making decisions. In an example involving CM, the board of directors of the day-treatment program might propose making the president of CIMI a permanent voting member of the board. This is a proposal the members of CIMI may want to endorse heartily. It changes the way decisions are made by involving consumers. Proposed changes provide an opportunity for your group to prompt responsiveness to the needs of its members and influence the form. of -the -final decisions. Watch for incomplete of confusing information. This involves identifying reports or rumors that lack information about what's happening, to whom, where, when, why, or what effects this information has on your group. A mental health center may decide to delay the filling of vacant positions in its case management program. CAA may want to contact staff members asking for an explanation. Similarly, members of CIMI might contact staff of a service center to clarify a draft of a press release that announces services will not be available during August. Identifying incomplete or confusing reports suggests information your group may need to collect or clarify. It also helps in making sure the information is clear and understandable by all group members. Watch for unmet needs. Listen for complaints from others, and note your own observations about persistent obstacles, unfair treatment, and lack of needed help. For example, over several months, a member of CM might note several complaints about the problems individuals with mental illness have finding a decent and affordable place to live. This might be a persistent obstacle the organization may want to study. Alternatively, a member of CAA might find it difficult to find transportation to the group's meetings. CAA might want to develop a proposal to address this problem. Identifying unmet needs may lead your group to propose changes in services or new programs to local decision makers. These can produce important benefits for those your group represents. Watch for unresponsiveness of others to your suggestions. Note other persons who refuse, delay, or ignore suggestions, corrective feedback, or proposals made by your group or other advocates. Note if others are failing to take your group's needs into consideration. For example, the results of a survey reported in a League of Women Voters issue paper might identify the lack of affordable housing in your area as a problem for persons with mental illness. Yet, after a year, nothing is done by the city council regarding housing. This may be a condition CAA may want to criticize. Alternatively, the executive director of the mental health center might ignore repeated requests to develop weekend social activities, because of budgetary restrictions. This lack of response might lead the group to organize a series of weekend picnics on the lawn outside the center during the summer. This might demonstrate the simplicity of the request, draw attention to it, and provide some exciting social events itself. If people can refuse or ignore your group's action on a particular issue, they may do so again on another issue. It is important that your group follow up on its suggestions or proposals. Putting pressure on those who ignore your group helps protect your reputation for effectiveness. Watch for active resistance or hostility. Active resistance or hostility involves unfair treatment, attempts by some one or some group to deny individuals their rights or benefits, disruption of your activities, or disruption of the operation of other groups. A landlord might threaten to terminate a woman's lease if she doesn't stop sitting out in front of the building. He tells her that other tenants have complained that the sight of her sitting in front of the apartment makes it look like a flophouse. Such activity may be a violation of fair housing laws. A group such as CAA may wish to help file a formal complaint or take legal action against the landlord. Alternatively, a number of consumers may want to visit her regularly at her apartment to discuss the matter -- perhaps while sitting on the front porch. Alternatively, a staff member of a day-treatment program might resist involving consumers on a project, because that person believes it would cause her more work, and the project could be done easier, faster, or better without consumer involvement. This is an issue group members might want to pursue, because it is counter to the goals of the consumer empowerment movement to deny consumer involvement. Identifying active resistance or hostility toward the efforts of your group provides the opportunity to discuss how you might protect your group and what actions you might take to resolve any conflicts. In summary, there are many types of issues. Knowing the various types will help you identify them and help your group decide what to do. SUMMARY OF ISSUE TYPES -- Changes in services or practices -- Changes in policies -- Changes in budget allocations -- Project proposals -- Incomplete or confusing information -- Unmet needs -- Unresponsiveness of others to your suggestions -- Active resistance or hostility EXERCISES: Lesson 5 Instructions. A number of events reported in various sources are listed below. Some events suggest issues relevant to a group of mental health-consumer advocates, such as CIMI. Other events will be announcements and generally interesting information, but not issues. If an event appears to be an issue, indicate the type of issue (e.g., policy change). If the reported event does not appear to be an issue, mark N/A in the column. You are provided with an example below. Read each item and fill in the blanks with your answer. Then check your answer with the answer key. EVENT WHAT TYPE OF ISSUE IS THIS EVENT EXAMPLE TRIBE EXPANDS CONTRACTED HEALTH SERVICES PROGRAM (The Council Fires News) The tribal health board announced that it has been successful in expanding the contracted health services offered directly by the tribal health center. EXAMPLE Issue type: Potentially beneficial service change. Possible action: Support and continue to study. BEACON RECEIVES FUNDS (The County News Weekly) The County Commission allocated $20,000 from its discretionary funds to the BEACON, a local center for adults with mental illness. These funds will be used to operate a nutritional meals program. EVENT WHAT TYPE OF ISSUE IS THIS EVENT? EDITORIAL - PROTECT OUR NEIGHBORHOODS (The Daily World Journal The city commission considered a zoning change request to develop low income apartments for individuals with a mental illness. Residents of the neighborhood are protesting on the grounds of safety. This newspaper must support the current residents. This neighborhood is home to both children and elderly who cannot protect themselves. The city can not gamble with the potential for violence. MEDICATIONS NUMBER ONE PROBLEM FOR MENTALLY ILL IN COMMUNITY (The Daily World Record) For people with mental illness, paying for medications they need to control their illness can be a problem. In fact, in a survey of this segment of our community's population, the University of Idaho found affordable medications to be their number one problem. OUTLOOK GOOD FOR HOUSING LAW (AP - Washington, DC) "A proposal to strengthen the federal law protecting citizens against discrimination in housing will be successful, although it may take several years," U.S. Congressman Dan Glickman said Saturday. For the past 10 years, the need to change portions of the federal housing law has been apparent to the U.S. Congress. EVENT WHAT TYPE OF ISSUE IS THIS EVENT? PERSONAL CONVERSATION WITH A FRIEND "I stopped by the tribal health center the other day to pick up some materials on depression. I was surprised to find the center was closed. They just reduced their hours to three days a week." KLWZ RADIO NEWS For the second time in less than a year, the County Drug Enforcement agency has followed a trail of drugs that led to a number of arrests. Six local residents were arrested early this morning and two are still wanted SCHOOL BOARD ADOPTS NEW POLICY (The Daily World Record) In a close vote, the District 489 School Board adopted a policy that will integrate children with mental illness into classrooms in all elementary schools. A motion to eliminate funding for special classrooms for children with mental illness was also adopted EVENT WHAT TYPE OF ISSUE IS THIS EVENT? CITY CONSIDERS AIR-PORT ISSUE (The Daily. World Record) At a study session last week, city commissioners discussed proposals from private groups that want to operate the new terminal building at the city-owned airport. MINUTES OF THE REGULAR STAFF MEETING The consumer advocacy committee's request for a staff liaison is not mentioned. INDEPENDENCE NEWSLETTER A grant application has been submitted to the state Human Resources Division. The proposal is to develop local employment opportunities over the next 2 years. MENTAL HEALTH CENTER BOARD OF DIRECTORS MEETING MINUTES During the June meeting, the Board of Directors voted 7 to 5 to require prior approval of any public education or advocacy projects conducted by consumers. Approval must first be sought from the Executive Director. If the project is controversial, the Executive Director will refer it to the Board for review. ANSWER KEY: Lesson 5 EVENT ISSUE TYPE EXPLANATION OF POSSIBLE ACTION BEACON RECEIVES FUNDS Budget allocation Compliment commissioners EDITORIAL - PROTECT OUR NEIGHBORHOODS Hostile action, unfair treatment File a complaint MEDICATIONS NUMBER ONE PROBLEM FOR MENTALLY ILL IN COMMUNITY Unmet need Request enforcement of law OUTLOOK GOOD FOR HOUSING LAW Nonissue This is taking place at the national level PERSONAL CONVERSATION WITH A FRIEND Decrement in services Criticize KLWZ RADIO NEWS Nonissue Provide public support SCHOOL BOARD ADOPTS NEW POLICY Policy change Provide public support CITY CONSIDERS AIRPORT ISSUE Nonissue MINUTES OF THE REGULAR STAFF MEETING Unclear or confusing information or lack of responsiveness Request explanation INDEPENDENCE NEWSLETTER Proposal to develop a local program Support MENTAL HEALTH CENTER BOARD OF DIRECTORS MEETING MINUTES Change in rule for making a decision Study and monitor change LESSON 6 SELECTING RELEVANT ISSUES TO REPORT There are many events that occur within the general community and within any specific organization. But not every event is relevant to a particular consumer group, nor is it possible for most groups to respond to each event. In fact, for most consumer-based organizations, it is important to focus attention on only a few ' issues at a time. Thus, a major task of a monitor is to carefully select relevant issues to report to the group. Determining whether a particular issue is relevant involves judging how it affects your group. This lesson describes some considerations in selecting relevant issues from the many you might identify. Read the descriptions, and complete the exercises at the end of the lesson. Look for issues of personal interest. Select issues that affect you and others similar to you. For example, a member of Consumer Advocates in Action (CAA) might be told by the landlord that an apartment she is interested in has already been leased. During the next week, an ad for the apartment appears in the newspaper. When she calls to ask about the apartment, she is again told it has been rented. Yet, the ad continues to appear in the paper. This is at least a confusing situation the group can help to investigate. It may constitute active resistance (i.e., a violation of fair housing law) against which legal action could be taken. In another example, a member of CIMI might want to report the extraordinary efforts of the tribal health center staff to help him obtain SSDI benefits after he had initially been denied. This may be an opportunity for the group to compliment the staff on a job well done. Helping each other is one of the key reasons people organize consumer groups. Look for issues that affect other consumers . Select problems that consumers might have in common. A member of CAA might hear from a member of a family support group that she is unable to pay for prescription medication for her son. The consumer group might conduct a study to determine if this is a common problem. Or, the group may want to develop a proposal to solve the problem. A member of the consumer group may note that the local warm line is trying to establish a toll-free number. This is a service change that your group may want to compliment. Addressing issues consumers have in common is an efficient and effective way of benefiting the group's constituency. Look for issues that affect current activities . Select issues you identify as bearing on the current goals, objectives, or activities of your organization. For example, one goal of groups such as CM and CAA might be to integrate all community services and programs. Thus, members of these consumer groups might select an issue involving a proposal by the tribal health board to place mental health, substance abuse, and other social and health services in one center, encouraging coordination among the programs. The group would want to support such an effort, as it fits into their goals. Similarly, a decision by the board. of directors of a regional community mental health center requiring the executive director to approve all education and advocacy contacts might be reported as a change in the rules for making decisions. A consumer group such as CINH may want to monitor the effects of this decision closely. A number of unexpected events can affect the success of a current project. A group must take advantage of events to further its goals and adjust its activities to changing circumstances. Look for issues sirmilar to ones addressed in the p ast. Select issues you identify as similar to issues on which your group has acted in the past. An issue dealing with the proposal by a Community Housing Task Force to develop and begin building affordable housing - including consumer/tenant labor to keep costs down - may be relevant to consumer groups such as CIMI, if they have dealt with housing issues in the past. Such an issue represents an opportunity to suggest the inclusion of a number of units that might be specifically designed for or set aside for people with mental illness. Addressing issues similar to ones you have addressed in the past reminds others of your group's commitment. Demonstrating continued interest may give you access to plans and decisions that can benefit your group. It also allows you to- use tactics you've used successfully in the past. Look for issues that affect similar other groups located in the same area. Select issues that may be important to other organizations dealing with similar problems or dealing with different problems but using the same methods as your organization. Such issues may be important even if they don't appear to affect your group directly. A member of CAA might report that the local developmental disabilities center is concerned about the development of jobs for people with disabilities. This might be an opportunity to develop a coordinated strategy in approaching employers. Similarly, CIMI may want to publicly support an effort by CAA to educate local employers about the requirement of the Americans with Disabilities Act. Working on common issues with other groups strengthens group networks. SUMMARY OF FACTORS THAT MAKE AN ISSUE RELEVANT - Issues of personal interest - Issues that affect other consumers - Issues that affect current activities - Issues similar to ones addressed in the past - Issues that affect similar other groups located in same area EXERCISES: LESSON 6 Instructions. You will find a list of events below. Some are issues, and some are not. Read each of the following entries, and indicate what FACTOR might make this issue relevant to a group of adults with mental illness or their families. This group has worked on community transportation over the past 2 years and is currently addressing public education. In the second column, tell why it is an important issue to the group. An example is shown below. EVENT IS THIS AN ISSUE? WHAT MAKES IT RELEVANT, IF YOU THINK IT IS? EXAMPLE PERSONAL CONVERSATION A member of a tribal mental health support group tells you her son, who has a mental illness, is reluctant to seek treatment because he feels the stigma of everyone in the general tribal services waiting room knowing he is there for mental health services. HOUSING BOARD NOMINATIONS SOUGHT (County News Weekly The county commission is soliciting recommendations for individuals to serve on the public housing board. Nominations will be accepted from the public until June 10. EVENT IS THIS AN ISSUE? WHAT MAKES IT RELEVANT, IF YOU THINK IT IS? COUNTY CLINIC CHANGES POLICY (County-News Weekly) The Garberson clinic, the primary outpatient medical provider in the county, has announced that it will no longer accept Medicare or Medicaid assignment. The Clinic Director, Jason Scrooge, explained that the reimbursement they receive from these Federal and State sources does not cover the actual costs of services. In order to stay in business, only patients with private insurance or who can demonstrate an ability to pay will be accepted. HAVE YOU HEARD? (Independent Newsletter) There is a resource guidebook available for disabled persons planning to attend the 1988 Summer Olympics in Japan. Accessibility information on flights, hotels, restaurants, and major entertainment attractions are included. It was designed and produced by the Nippon Olympic Committee and can be purchased from them for $12. EVENT IS THIS AN ISSUE? WHAT MAKES IT RELEVANT, IF YOU THINK IT IS? DISCUSSION TOPIC AT SUPPORT GROUP MEETING Mike, one of the most shy participants in a weekly support group, mentions that the security guard at the local mall hassled him twice the last week. The last time Mike reports that he said, "Listen, people like you scare the customers and I don't need the hassle from my bosses. So, I don't want to see you hanging around anymore." Another participant says they had a similar experience two weeks ago and had been afraid to go back. TOLL-FREE LEARNING DISABILITIES HOTLINE (Independent Newsletter) An announcement has been made about a toll-free information and referral service for teachers who serve learning disabled teens. For more information, call 1-800-522-3458. EVENT IS THIS AN ISSUE? WHAT MAKES IT RELEVANT, IF YOU THINK IT IS? TRANSPORTATION FUND ESTABLISHED (County News Weekly) At their regular Tuesday night meeting, Hamilton county commissioners approved a proposal by Independence Inc., a regional disability services program, for funds to operate a subsidized voluntary transportation program. The $10,000 allocation will go to defray the costs of transportation provided to people with disabilities who need rides to Ludburry or other towns for service. If you need help, call 555-1212. ANSWER KEY: Lesson 6 EVENT RELEVANCE EXPLANATION PERSONAL CONVERSATION Issue that affects other consumers Concern about the stigma of seeking treatment may affect other consumers as well HOUSING BOARD NONIINATIONS SOUGHT Issue that affects current activity Joining the board would provide an opportunity for public education on housing needs of persons with a mental illness COUNTY CLINIC CHANGES POLICY Issue that affects similar groups in the area Lack of access to Medicaid services will affect any low income person seeking medical care, including those with a mental illness HAVE YOU HEARD Non-issue Not a local event DISCUSSION TOPIC AT SUPPORT GROUP MIEETING Issue of personal interest Helping consumers resolve this discriminatory treatment and combat discrimination by the mail employees would be an example of consumers helping each other TOLL-FREE HOTLINE Non-issue TRANSPORTATION FUND ESTABLISHED Relates to transportation issues addressed in the past Reminds individuals of your group's commitment to these issues LESSON 7 DEVELOPING CLEAR GOALS AND SUGGESTIONS FOR ACTION Advocacy groups exist . to promote a broad set of values, including such principles as fairness, equal access, equal opportunity, independence, community integration, social acceptance, safety, dignity, and consumer control. Issues involve the application of these principles in everyday situations. For example, a proposal to build a fully accessible recreation center can have positive or negative effect on the principle of community integration. The general goals of a group are to support positive changes, prevent negative changes, or develop new ways of enhancing these principles. This lesson is designed to help you develop clear statements of the goals you want your group to promote and suggestions for action that will achieve common goals. Once you have selected a relevant issue to report, you should develop a clear statement of what you would like the group to achieve in the situation, the goal, and suggestions on how the goal might be addressed. The Situation/Goal Chart and the Goal/Response Chart presented here are designed to help you clarify the relationship between the issue type, goals, and possible actions. Using the categories suggested by the chart will help the chairperson lead the group to planning projects systematically. It will also make use of the Project Planning Guide possible. ISSUES/GOAL CHART SITUATION/ISSUE TYPES Good News . Positive changes in service, policy or budget allocation; and potentially beneficial proposals. GENERAL GOALS Reinforce . by supporting, encouraging complimenting, facilitation, honoring. Contradictory Information Rumors, complex issues, incomplete or confusing information. Investigate by conducting studies, analyzing, documenting, clarifying, revising, UNMET NEEDS Develop a Solution by expanding existing services or new options or programs. Bad News Negative changes in service, policy, or budget conditions; an potentially harmful proposals; unresponsiveness; offensive language or action; discrimination. Oppose by criticizing, educating, complaining, and proposing alternatives. Goal/Response Chart REINFORCE INVESTIGATE 2. Personally compliment favorable action 3. Organize celebration 4. Provide public support 5. Volunteer to help 13. Request participation 22. Conduct a fund-raising activity 23. Sponsor a conference 24. Offer public education 25. Develop consensus between groups 26. Build a coalition 31. Conduct a petition drive 32. Conduct a letter-writing campaign 5. Volunteer to help 6. Document evidence of a complaint 8. Establish a formal communication mechanism 9. Request formal justification 11. Gather more information 12. Prepare a fact sheet 13. Request participation 14. Watchdog decision process 20. Conduct a study 23. Sponsor a community conference 25. Develop a consensus between groups 26. Build a coalition 30. Organize consumer service audits service audit DEVELOP A SOLUTION OPPOSE 2 Personally compliment favorable action Provide public support 5. Volunteer to help 8. Establish a formal communication mechanism 11. Gather more information 12. Prepare a fact sheet 13. Request participation 14. Watchdog decision process 15. Provide corrective feedback 16. Remind those responsible 17. Make an informal complaint 18. Seek a mediator or negotiator 19. File a formal complaint 20. Conduct a study 21. Develop a proposal 22. Conduct a fund raising activity 23. Conduct a community conference 25 Develop a consensus between groups. 26. Build a coalition 28. Seek enforcement of existing laws, policies or ordinances 29. Seek enactment of new laws policies or ordinances 30. Organize consumer service audit Conduct a petition drive Conduct a letter writing campaign 37. Organize a boycott 38. Establish an alternative system or program 1. Postpone action 7. Personally criticize unfavorable action 9. Request formal justification 10. Express opposition publicity 12. Prepare a fact sheet about the issue 16. Remind those responsible 17. Make an informal complaint 18. Seek a mediator or negotiator 23. Sponsor a community conference or public hearing 24. Offer public education 25. Develop a consensus between groups 26. Build a coalition. 27. Initiate a legal action 28. Seek enforcement of existing laws, policies or ordinances 29. Seek enactment of new laws, policies or ordinances 31. Conduct a petition drive 32. Conduct a letter writing campaign 33. Flood the system 34. Media expose 35. Organize passive resistance 36. Organize public demonstrations 37. Organize a boycott To use the chart, first decide what type of situation the issue represents. One situation may represent more than one issue type. For example, the county commissions allocation of funds to support a temporary shelter program may be defined as a positive service, policy, or budget change. Second, examine the goals implied by each situation. Check the goals you feel most accurately reflect your opinions. For example, some consumers might consider a proposed recreation center for special populations to be a potentially beneficial proposal that should be supported. To others, it could be potentially harmful, because it could limit community integration. In the latter case, the group goal might be to oppose the proposal, improve it, or prevent the project. Debate over different interpretations is the heart of good group discussion. After you have selected the goal(s) you'd like to see achieved in the situation, review the projects listed under that goal(s) in the Goal/Response Chart. Choose one or more that strike you as appropriate. For example, if you feel that the county commission's actions or the recreation center proposal is a potentially beneficial proposal, you would look at the projects listed under the goals of supporting and endorsing. Project responses such as complimenting favorable action, providing public support, and volunteering to help might seem appropriate to you. Next, you can examine what is involved in these responses by reviewing the project outlines in the Project Planning Guide. For example, in examining Project #5, Providing Public Support, you would see that: 1) This project involves ". . . sending letters to editors of newspapers and to public officials expressing your support." 2) The objective of the response is to increase the chances the proposal will be accepted. 3) The resources required to implement the project include volunteers to draft the letter, the chairperson's time to review and approve it, and someone to type, copy, and mail it. 4) There are several benefits and few costs to taking this action. EXERCISE: Lesson 7 One issue is presented below. Use it to practice developing clear goal statements and action suggestions. Once you become familiar with it, you'll find that you won't need to use the Project Planning Guide all the time. ISSUE The local health and welfare office has announced that it will apply for funds to develop a five bed respite house for persons needing temporary 24-hour support with their mental illness. However, you are aware that no consumers or their families were consulted in preparing the plans or the grant proposal. 1. What is the issue type? _______________________________________________ 2. What goals would you like the group to promote in this situation? _____________ ______________________________________________________ ____________ ______________________________________________________ ____________ 3. What actions from the Goal/Response Chart strike you as appropriate in this situation? ______________________________________________________ _____________ 4. Choose the most appealing action. What does it involve? What is the objective? What resources are required? What are the potential costs and benefits? ______________________________________________________ _____________ ______________________________________________________ _____________ ______________________________________________________ _____________ ______________________________________________________ _____________ 5. Advocacy groups exist to promote a broad set of values. Number the values listed below in order of importance to you, with 1 being the most important. ___Safety ___ Independence ___ Consumer control ___Fairness ___ Dignity ___ Social acceptance ____ Equal access ____ Community Integration Select your own issue. It can come from your personal experience or from the materials you've covered. Write a brief summary. ______________________________________________________ ________________ ______________________________________________________ ________________ ______________________________________________________ ________________ ______________________________________________________ ________________ ______________________________________________________ ________________ 6. What is the issue type? ______________________________________________ 7. What goals would you like the group to promote in this situation? ____________ ______________________________________________________ __________ ______________________________________________________ __________ 8. What actions from the Goal/Response Chart strike you as appropriate in this situation? ______________________________________________________ ___________ ______________________________________________________ ___________ 9. Choose the most appealing action. What does it involve? What is the objective? What resources are required? What are the potential costs and benefits? ______________________________________________________ ___________ ______________________________________________________ ___________ ______________________________________________________ ___________ ______________________________________________________ ___________ ______________________________________________________ ___________ 10. What values are involved? ____________________________________________ ______________________________________________________ ___________ ANSWER KEY: Lesson 7 1. This is a potentially beneficial proposal. But it may also represent a negative policy or practice, since no consumers or family members were consulted in the planning process. 2. It is likely that you'd want the group to support the positive proposal. You may also want the group to try to reverse the practice of not consulting consumers. 3. Possible actions include: complimenting the potentially beneficial proposal, providing public support for the proposal, personally criticizing the failure to consult consumers and family members, and requesting participation in future action. 4. Check the Project Planning Guide in Volume III for a description of what the four actions involve. You may have chosen other actions. Review those as well. The final choice is yours. 5. There are no correct answers to this question. LESSON 8 REPORTING SELECTED ISSUES TO YOUR GROUP Once you have identified an issue and have an idea about possible actions to take, report them to your group. There are seven steps involved in. reporting selected issues: (1) State the issue and source; (2) describe the situation; (3) tell what you would like the group to achieve in this situation; (4) explain what makes the issue relevant to the group; (5) state your opinion on the values involved; (6) suggest one or more steps for the group to consider; and (7) be sure a decision is made on your report. Here is an example of a complete report: I read in yesterday's paper that the county commission is in the process of deciding whether or not to start a warm line. I know personally that this responds to an important unmet need. This project will affect every person with a mental illness in the community. It involves consumer control of a city program. This proposal is a welcomed effort to address this need. I'd like to see the group support the project in every way we can. I'd like to suggest that we write a letter to the editor stating our support and volunteer to help the project planners in any way we can. The following is a description of the steps required to complete a good issue report to your group. State the issue and the source. Describe the problem as you understand it, and specify the source of your information (e.g., newspaper, minutes, newsletter). For example, "I read in yesterday's paper that the City Council is in the process of deciding whether or not to start a warm line. The warm line would provide people with an opportunity to receive support over the telephone at all hours." Stating the issue helps keep group members informed about events. Moreover, stating the source helps listeners judge the credibility of the information. It also gives them a way to check your report, if they wish to do so. Describe the situation. Tell what type of issue you are reporting. The Situation/Goal Chart lists five general issue types you can describe. These include: 1) positive service, policy or budget changes, or potentially beneficial proposals; 2) negative service, policy or budget changes, or potentially harmful proposals; 3) complex issues or ones with incomplete or confusing information; 4) unmet needs; and 5) unresponsiveness of others to your group, or discrimination. (The Situation/Goal Chart will help clarify the relationship between the issue type and what the group might want to achieve in different situations.) For example, "I know personally that a warm line addresses an important unmet need. This proposal is a welcome effort to address this need." Labeling the type of issue will help members understand it clearly, suggest the goal you have in mind, and help the group analyze the issue and plan action effectively. ISSUES/GOAL CHART SITUATION/ISSUE TYPES Good News . Positive changes in service, policy or budget allocation; and potentially beneficial proposals. GENERAL GOALS Reinforce . by supporting, encouraging complimenting, facilitation, honoring. Contradictory Information Rumors, complex issues, incomplete or confusing information. Investigate by conducting studies, analyzing, documenting, clarifying, revising, UNMET NEEDS Develop a Solution by expanding existing services or new options or programs. Bad News Negative changes in service, policy, or budget conditions; an potentially harmful proposals; unresponsiveness; offensive language or action; discrimination. Oppose by criticizing, educating, complaining, and proposing alternatives. Explain what makes this issue relevant to the group. Explain who will be affected by the issue. (Review Lesson 3, if you are unsure about what makes issues relevant to the group.) For example, "This project will affect every consumer in the community." Explaining why you selected a specific issue gives the group members a sense of how critical the issue is both to you and the group. State your opinion on the values involved. Tell the group which of the many principles it values are involved in this issue, including: fairness, equal access, equal opportunity, independence, community integration, social acceptance, safety, dignity, and consumer control. For example, "I believe this issue involves consumer control of city programs that we have been promoting for years." Stating your opinion helps the group judge the significance of the issue. It will help group members compare the issue you report on to other issues being addressed as part of the group's current activities. This will help the group set its priorities for action. Tell what you would like the group to achieve in this situation. State whether the issue is one you'd like the group to support, oppose, avoid, prevent, clarify, improve, or stop. For example, you might say, "I'd like to see the group support this project in every way we can. " I A clear goal statement helps the group consider possible options. (The Situation/Goal Chart will help clarify the relationship between issue types and what the group might want to achieve in different situations.) Suggest one or more actions for the group to consider. Suggest specific steps that might achieve the goal you describe. You can use the Project Planning Guide to find potentially effective steps to suggest. For example, "I'd like to suggest we write a letter to the editor stating our support and volunteer to help the project planners in any way we can. Suggesting specific steps helps the group discuss the issue in a way that leads to a decision. Goal/Response Chart REINFORCE INVESTIGATE 2. Personally compliment favorable action 3. Organize celebration 4. Provide public support 5. Volunteer to help 13. Request participation 22. Conduct a fund-raising activity 23. Sponsor a conference 24. Offer public education 25. Develop consensus between groups 26. Build a coalition 31. Conduct a petition drive 32. Conduct a letter-writing campaign 5. Volunteer to help 6. Document evidence of a complaint 8. Establish a formal communication mechanism 9. Request formal justification 11. Gather more information 12. Prepare a fact sheet 13. Request participation 14. Watchdog decision process 20. Conduct a study 23. Sponsor a community conference 25. Develop a consensus between groups 26. Build a coalition 30. Organize consumer service audits service audit DEVELOP A SOLUTION OPPOSE 2 Personally compliment favorable action Provide public support 5. Volunteer to help 8. Establish a formal communication mechanism 11. Gather more information 12. Prepare a fact sheet 13. Request participation 14. Watchdog decision process 15. Provide corrective feedback 16. Remind those responsible 17. Make an informal complaint 18. Seek a mediator or negotiator 19. File a formal complaint 20. Conduct a study 21. Develop a proposal 22. Conduct a fund raising activity 23. Conduct a community conference 25 Develop a consensus between groups. 26. Build a coalition 28. Seek enforcement of existing laws, policies or ordinances 29. Seek enactment of new laws policies or ordinances 30. Organize consumer service audit Conduct a petition drive Conduct a letter writing campaign 37. Organize a boycott 38. Establish an alternative system or program 1. Postpone action 7. Personally criticize unfavorable action 9. Request formal justification 10. Express opposition publicity 12. Prepare a fact sheet about the issue 16. Remind those responsible 17. Make an informal complaint 18. Seek a mediator or negotiator 23. Sponsor a community conference or public hearing 24. Offer public education 25. Develop a consensus between groups 26. Build a coalition. 27. Initiate a legal action 28. Seek enforcement of existing laws, policies or ordinances 29. Seek enactment of new laws, policies or ordinances 31. Conduct a petition drive 32. Conduct a letter writing campaign 33. Flood the system 34. Media expose 35. Organize passive resistance 36. Organize public demonstrations 37. Organize a boycott Be sure a decision is made on your report. Every issue you report should lead to a vote to take a specific action, form a committee to study the issue further, or table the issue. If the group moves on to discuss other issues without making a decision, you should remind them to vote on your recommendations. For example, if the group began discussing a recent conference without taking a vote on supporting the warm line proposal, you might say, "Excuse me, but I'm confused. It doesn't seem like we made a decision on supporting the warm line. Are we going to vote on my proposal?" Reminding the group to make a specific decision on every reported issue ensures members' work will be rewarded. It also clarifies the group's position and intentions. SUMMARY OF STEPS 1. State the issue and source. 2. Describe the situation. 3. Tell what you would like the group to achieve in this situation. 4. Explain what makes the issue relevant to the group. 5. State your opinion. of the values involved. 6. Suggest one or more steps for the group to consider. 7. Be sure a decision is made on your report. EXERCISES: Lesson 8 Instructions. Three practice issues are presented below. Each sample offers A greater challenge to preparing a report. First, decide what type of situation the issue represents, what you'd like the group to achieve, and what action you might suggest. Then, write out what you might say in your report to a group. Compare your reports with those in the answer key. ISSUE #1: A neighbor might mention that her daughter told her that some of the classes at her school have started mental illness awareness projects. This appears to be a change in school services that affects the current public education activities of your group. 1. What is the situation (positive or negative change in services or policies, potentially beneficial or harmful proposal, unmet need, incomplete or confusing information, offensive language, or discrimination)? ______________________________________________________ _______________ ______________________________________________________ _______________ ______________________________________________________ _______________ 2. What would you like the group to achieve (support, oppose, facilitate, prevent, develop new options, improve, clarify, or correct)? ______________________________________________________ _______________ ______________________________________________________ _______________ ______________________________________________________ _______________ 3. What would you suggest the group do (review the Goal/Response Chart for ideas)? ______________________________________________________ _____________ ______________________________________________________ _____________ ______________________________________________________ _____________ ISSUE #2: You are listening to a favorite radio talk show, when the host refers to persons with mental illness as "psychos, crazies, stupid, lunatics, and zombies." He says he can't understand why so much money is spent on so few people when there's no expected return on the investment. 4. State the issue and the source. State the problem as you understand it, and specify the source of your information. You might say, ______________________________________________________ ________________ ______________________________________________________ ________________ 5. Describe the situation. Tell what type of issue you are reporting. You might say, ______________________________________________________ ________________ ______________________________________________________ ________________ 6. Explain what makes the issue relevant. Tell who will be affected by the issue. You might say, ______________________________________________________ ________________ ______________________________________________________ ________________ 7. State your opinion of the values involved. Tell which of the many principles your group values might be involved, such as: fairness, equal access, community integration, well being, etc. You might say, ______________________________________________________ ________________ ______________________________________________________ ________________ 8. Tell what you would like the group to achieve. Tell whether you'd like the group to support, oppose, correct, clarify, prevent, etc. the situation you've described. You might say, ______________________________________________________ _______________ ______________________________________________________ _______________ 9. Suggest one or more actions for the group to consider. Suggest specific steps that might achieve the goal you've set. You might say, ______________________________________________________ _________________ ______________________________________________________ _________________ 10. Be sure a decision is made on your report. If the group moves on to discuss other issues without making a decision on your report, remind them to vote on your recommendations. You might say, ______________________________________________________ _________________ ______________________________________________________ _________________ ISSUE #3: You read in the tribal newspaper that the tribal health board is considering an expansion of mental health counseling services offered on the tribal reservation. 11. What is the situation? ______________________________________________________ _________________ ______________________________________________________ _________________ 12. What would you like the group to achieve? ______________________________________________________ _________________ ______________________________________________________ _________________ 13. What would you suggest the group do? ______________________________________________________ _________________ ______________________________________________________ _________________ 14. State the issue and the source. ______________________________________________________ _________________ ______________________________________________________ _________________ 15. Describe the situation. ______________________________________________________ ______________ ______________________________________________________ ______________ 16. Explain what makes the issue relevant. ______________________________________________________ ______________ ______________________________________________________ ______________ 17. State your opinion of the values involved. ______________________________________________________ ______________ ______________________________________________________ ______________ 18. Tell what you'd like the group to achieve. ______________________________________________________ ______________ ______________________________________________________ ______________ 19. Suggest one or more actions for the group to consider. ______________________________________________________ ______________ ______________________________________________________ ______________ 20. Be sure a decision is made on your report. ______________________________________________________ ______________ ______________________________________________________ ______________ ANSWER KEY: Lesson 8 ISSUE #1 "A neighbor told me her daughter's school is starting mental illness awareness projects in some classes. I think this is a very positive change in school policy. It will increase the awareness of kids in school of what mental illness is all about and promote their acceptance of persons with a mental illness. Id like to see us support this change. Maybe we could volunteer to speak to some classes. The least we could do is write a letter expressing our support." ISSUE #2 "I heard Waldo Woody, the radio talk-show host on FM 109, use some very derogatory descriptions of people with mental illness like "psychos, zombies, imbeciles, and cripples" yesterday, when he was talking about Social Security. He was very critical about spending money on people outside of institutions when there wouldn't be any "return on the investment." I found his tone and remarks very offensive. He cast a negative shadow on every disabled person in town. I think his comments were unfair and maintain obstacles to our goals of community integration and acceptance we've been fighting for years. I think we should get him to apologize and correct the misconception he broadcast. I think the first step is to make an informal complaint to the station manager. If that doesn't work, we could file a formal complaint with the FCC." ISSUE #3 "I read in the Council Fires News that the tribal health board is considering an expansion of the mental health counseling staff. This is a positive change in services for persons with a mental illness. Persons will be able to get needed appointments much sooner, and may even have a choice of counselors. I would like us to not only support this proposal in writing, but also offer our opinions to the board on the specific mental health services that are needed the most on the reservation. Leadership and Empowerment Claudie Grant, Esq. Program Manager President's Committee on Employment of People With Disabilities Abstract This paper discusses the importance of leadership in the disability movement, especially as a pathway towards empowerment. Further, it explores some critical ingredients of good leaders and leadership. It also presents some useful suggestions to assist persons with disabilities, their families, and advocacy groups for such individuals. Introduction I was pleased and honored to have had the opportunity to participate in the "New Leadership For A New Era" Conference. I see leadership as an important component in the disability movement. Leadership is a pathway towards empowerment. I will explore some critical ingredients that I believe are necessary to help in the formation of good leaders and leadership. This article is intended to highlight a few "nuts and bolts" about leadership that may be useful to persons with disabilities, their families, and organizations advocating for such individuals. I. What is a leader? A leader is an individual who guides other people or organizations in a certain direction or on a charted course. A leader directs the operations or activities of a group of people. Leadership is critical in any organization, because without leadership, organizations and people tend to go astray. Now, more than ever, leadership abilities are essential skills that the disability community must nurture and fully utilize. The Americans with Disabilities Act {ADA} (PL 101-336) opens up opportunities for persons with disabilities to exercise the empowerment they are now afforded. Civil rights organizations serving people from minority groups, women, and other protected classes have been able to make significant strides because they have had persons within their ranks that were able to lead and advocate. It is essential that people with disabilities have persons within their ranks who can effectively project the new empowerment embodied in ADA. II. Why be a leader and an advocate within the disability community? It is important that persons from the disability community become leaders. Currently, there are too few individuals within the disability community who have taken on the mantle of leadership and it is critical that an increasing number of persons with disabilities take on leadership roles. With ADA, leaders are needed now more than ever to guarantee that the law is fully implemented. Leaders are continually needed to keep persons with disabilities informed and organized. Leaders must also advocate for the empowerment, rights, and privileges of persons with disabilities. Existing leaders and advocates are role models for other persons with disabilities. Being a leader can be both challenging and satisfying. In addition, I would like to point out that there is a dearth of leaders within minority communities. We need leadership badly. Therefore, those of us who have gained some measure of success must work hard to assist others. Many minority individuals with disabilities lack the essential skills to advocate for themselves and we must work to correct that problem. Persons of color must be provided opportunities to demonstrate their leadership skills and they must take advantage of all opportunities to do so. For instance, the collaborative arrangement between the Howard University Research and Training Center (HURTC) and the President's Committee on Employment of People with Disabilities (PCEPD) has been a major stepping stone towards developing multicultural leaders with disabilities. The PCEPD Disability and Employment Concerns (DEC) Standing Committee's Leadership 2000 project and Howard University's Bridges To Leadership 2000 project have greatly assisted in the empowerment of minority persons with disabilities. III. What does leadership entail? Leadership entails being a responsible, strong-willed, and strong-minded person. Leadership must show strength and yet be willing to compromise when necessary. Having good interpersonal and human relation skills is essential. Leaders must be able to persuade other people to rally for causes when necessary. Good leadership requires that persons be well informed about issues that impact on them and their constituents. Being a good leader also requires working in the trenches along with comrades. Good leaders must be motivators, negotiators, and consensus builders. Good leaders must always be concerned about the welfare of comrades. Effective leaders must always be able to communicate with comrades, government, the private sector, and political leaders. Leaders must be knowledgeable about laws like ADA, and be politically astute as well. They should have the ability to effectively lobby for the rights of people with disabilities. Leaders within the disability community must be able to communicate with persons who have various disabilities. A leader must also possess diplomatic and advocacy skills. IV. Can I be a leader and a follower? One of the most frequent questions raised by persons with disabilities is, "Can I be a Leader?" Yes, you can be a leader and a follower, often at the same time. Too often, leaders make the critical mistake of not wanting to be followers. Good leaders are also good listeners. A good listener pays attention to the concerns of others, and a sensitive leader remains attuned to the needs of his/her constituents. Leaders emerge from the ranks of followers and often continue as followers of others. Every great leader must fall in line with others and work in the background. Every great leader has sought and acted upon advice from followers and has merged the roles of following and leading. Within the disability community, we must both lead and follow in order to become completely empowered and fully implement the ADA for all American citizens with disabilities. We cannot afford to be fragmented on the basis of our roles. Leaders at all levels must work together in a coordinated, cooperative effort just as we did in the campaign for the passage of the ADA. V. Do you need a large following to be considered a leader? Contrary to what most people think, you do not need a large following to be a leader. Oftentimes, leaders that have small followings are quite effective. For instance, in the political arena, the precinct leaders and ward captains are extremely valuable because they help provide the glue that keeps the larger organization intact. In order to make ADA effective for all persons with disabilities, leaders of large and small groups must work together. Persons with disabilities in every hamlet, village, town, county, city, and state will need dedicated leadership to work for the full implementation of ADA and the empowerment of their peers. Sharing the media spotlight is not a prerequisite for being a good leader. Not all leaders will receive the recognition that they believe is due them. Just as there is a place for leaders of large constituents, there is also a place for leaders of small groups. It is imperative for existing leaders to create and develop new leaders within the disability community so that they work for the full implementation of ADA and the struggle for empowerment of such persons. VI. How and where are leaders found? · 1. Leaders within the disability community may be found in: · a) Churches and in local and national church organizations b) Schools and colleges c) Community organizations such as Kiwanis, Lions, etc. d) Independent Living Centers e) Rehabilitation agencies f) Federal, state, and local government g) Advocacy groups 2. Leaders within the disability community may be recruited by: · Other persons with disabilities · Community people · Friends and family · Pastors, officers, and members of churches · Teachers · Human service professionals · Legislators and other government officials VII. How can I become involved and utilize my leadership skills? You might ask yourself, "How can I get involved and use my leadership skills?" You can and should get involved to advocate for yourself and others. Here are a few suggested ways of getting involved: · 1. Become involved in local community activities (e.g. neighborhood associations, citizens groups, public interest groups, consumer groups, etc.); 2. Volunteer for PTA's, school boards, civic library boards and other organizations to put the views of persons with disabilities views into accessibility plans; 3. Attend local community hearings and public meetings and speak out; 4. Attend Private Industry Council (PIC) meetings; 5. Join local organizations such as the Junior Chamber of Commerce, Kiwanis Club, Lions Club, local professional organizations, etc.; 6. Attend legislative sessions at local, state, and national levels. For example, attend city council meetings, county council meetings, state legislative sessions, and national legislative sessions (United States House of Representatives and The United States Senate). Participate, to the extent possible, in the legislative process; 7. Attend and participate, to the extent possible, in the administrative process at the local, state, and national levels (e.g. housing and zoning appeals, transportation authority hearings and meetings); 8. Lobby local, state, and national governmental bodies and officials to introduce and promote the passage of legislation that will be beneficial to persons with disabilities; 9. Become active in local, regional, and national religious bodies and social organizations and advocate for change; 10. Join local disability groups and actively participate in them (e.g. organizations for persons with hearing and visual impairments, persons with various disabilities such as Cerebral Palsy, Multiple Sclerosis, Polio, etc., and local independent living centers). Initiate new ideas for change that will be advantageous to persons with disabilities. Organize groups and organizations, if necessary; 11. Seek appointments to serve on local private, state, and national governmental boards and councils (e.g. school boards, neighborhood advisory councils, advisory boards for persons with disabilities, industrial boards and commissions, zoning boards, transportation committees, etc.); 12. Persons with disabilities should exercise their rights to vote in local state and national elections; 13. Seek elective offices if you desire to do so; and 14. Write letters to editors of newspapers, magazines, and television and radio stations concerning issues relating to persons with disabilities. The aforementioned are only a few suggestions of how you can become involved. You should think of as many ways as possible to become involved and attempt to effectuate change for the empowerment and betterment of people with disabilities. YOU CAN BE A LEADER, JUST GET INVOLVED. ONE PERSON CAN MAKE A DIFFERENCE. Peer Support And Disability Culture Peer Support and Disability Culture From the Kitty Room We Are Who We Are ..So Who Are We? Peer Support and Disability Culture A. Polar forces pull on individuals with disabilities creating a continuum of opinions and attitudes on what we want. We must understand the forces and how they affect our opinions on different issues. 1. Do we want Segregation or Integration? 2. Do we want Special Treatment or Equal Treatment? 3. Do we want Disability Pride or The Cure? 4. Do we want main stream American Culture or Disability Culture? B. Group Activity Measure yourself on the 1 - 10 scale on each polar force and see how each person differs. C. Defining Peer Support 1. What it is -- Permission, Encouragement, & Support 2. How we nurture a peer support environment 3. What it is not -- service coordination D. CILs building an interdependent disability community using different approaches to implementing a Peer Support program. 1. Plan A - hiring peer counselors; why it doesn't work well. 2. Plan B - using skilled staff to cultivate a peer support network. E. The evolution of Disability Culture 1. Disability type specific culture 2. Local community disability culture 3. Broad based national/ international disability culture F. Large Group Activity - Practice of Permission, Encouragement & Support through examples. PRE-TEST Place your-self on the scale of 1-10 for each polar force with 1 being the polar force stated first and 10 being the polar force mentioned second in each group. 1. Equal treatment versus special treatment: The disability community demands comparable services because we are equal AND the disability community demands special services because without them we are disadvantaged. After years of a lack of accommodation, the system has created major deficits in the skill level of people with disabilities resulting 70% or plus non-participation in employment and civic opportunities. 1-------------------------------------------------------------------------------- --------------- 10 Equal Special 2. Disability Pride Versus The Cure: The disability community needs to be openly proud of who they are in mind and spirit AND the disability community needs better medical and scientific technology to allow us to function competitively and no longer be disabled, when possible. 1-------------------------------------------------------------------------------- --------------- 10 Pride Cure 3. Segregation Versus Integration: The disability community needs to come together to share and support each other AND the disability needs to be fully integrated into their local community and society as a whole. 1-------------------------------------------------------------------------------- ------------- 10 Segregation Integration 4. Disability Culture versus American Culture: Persons with disabilities have unique experiences as a person that binds them to others with disabilities and that needs to be expressed through arts AND persons with disabilities need to participate and express themselves through the community and art forms at large. 1 ----- --------------------------------------------------------------------------------- ---- 10 Disability Culture American Culture DEFINING PEER SUPPORT 1. What is a Peer? A peer is a person who of equal status with another. (Webster's Dictionary) 2. What gives each of us Status? a. Paycheck versus no paycheck b. Same disability versus different disability c. Highly educated versus under educated d. High income versus low income e. New disability versus old disability f. Life long disability versus traumatic disability g. Skilled versus Non-Skilled h. Older age versus younger age i. Male versus female j. Your ethnic/race group versus my ethnic/race group k. Your Experience versus My Experience 3. What is Peer Support? A peer engages in the sharing of another peer's issues and views and in return gives them the following: a. Permission to express and believe in a personal point of view; b. Encouragement to undertake a personal course of action; and c. Tangible and intangible support for implementation of their personal plan for problem resolution. We all need peer support in order to move forward in our personal growth. 4. If there is unequal Status, how can the CIL provide be Peer Support as a Core Service? Plan A: Providing a fully effective peer support program at a CIL for every consumer that requests services, requires a CIL to have: 1. Unlimited budget 2. Unlimited staff 3. One peer of every kind of status 4. Unlimited evaluation tools for performance measures 5. Access to other miscellaneous resources as needed Plan B: Providing a fully effective peer support program at a CIL for every consumer that requests service requires a CIL to have: 1. A limited number of qualified staff to cultivate peer relationships among people with disabilities within the community 2. Access to other miscellaneous resources as needed 5. What does "qualified staff" mean? a. Good philosophical foundation in independent living philosophy; b. Acceptance of personal responsibility to communicate very effectively with many different individuals; c. a sincere interest and openness in sharing experiences and ideas with others; d. Superior resourcefulness in the generation of ideas and accessing of information; e. The ability to report events and facts accurately; f. the active pursuit of the identification and eradication of prejudices within themselves. 6. Under Plan B, what do we have to offer consumers in the provision of peer support? a. Relatively few one-on-one personal meetings; b. Numerous invitations to participate in groups; c. Personal engagement of community members in the on-going identification and selection of who their peers are and who their peers are not; d. Several or many different sources of peer support simultaneously; e. An environment of non-discriminatory and tolerance established and enforced by a facilitator; f. Access to information; g. Access to skill development methods; h. Access to support for advocacy; i. The potential for a peer support community network that is fully operational 24 hours per day, 7 days per week, and 365 days per year; and j. Staff with disabilities get peer support benefits and a community network (and use it more often than anyone else!). 7. Given the above conclusions, what is NOT peer support? a. Emphasis on service coordination tasks and services; b. Emphasis on record keeping; c. Emphasis on psycho-social analysis; d. Emphasis on behavior modification; e. Strict adherence to a written service plan; f. A static, unemotional process DISABILITY CULTURE 1. What is Disability Culture? The development of disability culture is the by-product of peer support within an interdependent community of people with disabilities. 2. The Elements of Disability Culture include: a. Strong friendships; b. Interdependence of small groups pooling resources; c. Marriages and the formation of functioning family groups; a. Collective problem solving by persons who share similar problems; b. Watchfulness within the community for emerging problems; f. Watchfulness for jeopardy of individuals; g. Development of unique cues, insider's humor, and language variations with the community; h. Strong rejection of outsiders who claim to speak for the disability community; i. Demand for the right to define who the group IS and who the group IS NOT; j. Participation in gatherings within the greater community in larger numbers; k. Greater impact and accommodation by the community at large; 1. Encouraged and supported self-expression resulting in the personal risk and exposure through expression within the arts; m. Higher self esteem by individuals through their group membership; and n. Greater general political involvement. IN SUMMARY Persons with a disability in quest of peer support will seek from an Independent Living Center assistance in building a network within the community of people with disabilities. They are seeking companions who can readily relate to their experiences as a community member with a disability, who are open to give and take relationships with other persons with disabilities, and who's company they enjoy. Peer support is one of the core services of an independent living center and ILC staff are frequently some of the primary beneficiaries of peer support efforts. However, the attempt to provide peer support within a structured setting of paid staff servicing consumers on a case by case basis is a limited and ineffective method that will more often fail than succeed. In promoting the building of an interdependent disability community, we will be simultaneously fostering the development of a disability culture locally, nationally, and worldwide. SAMPLE Job Description JOB TITLE: PEER SUPPORT Exempt (YIN): EMPLOYEE NAME: SUPERVISOR: SUMMARY: Coordinates and provides peer support to individuals and families requesting the assistance of the independent living center by performing the following duties: ESSENTIAL DUTIES AND RESPONSIBILITIES include the following: Provides permission, encouragement, and support to consumers in pursuit of there personal objectives. Assists consumers in the process of understanding of themselves and their environment. Assists consumers in taking control of their own lives to meet their personal goals and to avoid unnecessary and/or unwanted segregation apart from the community. Engages consumers in a on-going, one-on-one or group discussion of goals and concerns such as personal areas of lifestyle, civil rights, ambition, experiences, frustrations, and desires in a manner that increases their network of resources for problem solving. Maintains access to well-stocked library and related databases and organizes all information for easy self-help access by consumers and staff, including accessible formats. Assists in community research for the analysis of trends and the collective problem solving pertaining to both individual and systemic issues. Provides training to consumers related to self-help plans, skill development, and mobilization of inner capacities and environmental resources. Provides support that increases consumer's appreciation for cooperation with other people with disabilities for mutual help. Coordinates and facilitates work groups of consumers focused on peer issues. Keeps records of services provided using appropriate forms or computer database and compiles reports as needed including preparation of newsletter articles. Participates in conferences, staff meetings, in-service trainings, and committee work. Local and regional travel essential to responsibilities. SUPERVISORY RESPONSIBILITIES: NONE QUALIFICATION REQUIREMENTS: To perform this job successfully, an individual must be able to perform each essential duty satisfactorily. The requirements listed below are representative of the knowledge, skill, and/or ability required. Reasonable accommodations may be made to enable individuals with disabilities to perform the essential functions. EDUCATION and/or EXPERIENCE: Bachelor's degree (B. A.) from four-year college or university; or one to two years related experience and/or training; or equivalent combination of education and experience. This requirement can be waived when the employer identifies unusual experience and aptitude for the position based upon life experience. Within one year in the position, person must acquire a thorough understanding of the Independent Living Movement, it's philosophy, principles, and values and the ability to communicate these to others and a strong aptitude for using computer based information sources. LANGUAGE SKILLS: Ability to read and interpret documents such as regulations, operating instructions, and procedure manuals. Ability to write routine reports and correspondence. Ability to communicate effectively with the public and management. MATHEMATICAL SKILLS: Ability to apply concepts such as fractions, percentages, ratios, and proportions to practical situations. REASONING ABILITY: Ability to define problems, collect data, establish facts, and draw valid conclusions. Ability to interpret an extensive variety of technical instructions in mathematical or diagram form and deal with several abstract and concrete variables. CERTIFICATES, LICENSES, REGISTRATIONS: Willingness to obtain training on significant legislation affecting citizens with disabilities, independent living philosophy, accessibility standards and regulations, and computer tools. OTHER SKILLS and ABILITIES: The ability to travel throughout service region independently routinely and to travel state and nationwide when requested. Must have the aptitude for using computer tools reliably. PHYSICAL DEMANDS: The physical demands described here are representative of those that must be met by an employee to successfully perform the essential functions of this job. Reasonable accommodations may be made to enable individuals with disabilities to perform the essential functions. Employee must be able to manipulate data in a variety of formats, including visual, auditory, and/or tactile and have the ability to communicate effectively. ACKNOWLEDGEMENT: Employee must read and understand the above job description as it will be used to evaluate job performance. The employee is responsible for seeking clarification from his/her supervisor on any part of the description that is not understood. The employee's signature below signifies this understanding of the job description. Employee Signature Date Peer Support Large Group Activity A. Community Member makes a visit to the Peer Support staff person at the local independent living center and says: "This is what I think (--Any Example---)" "and this is what I want to do (--Related Example--)." B. Peer Support staff person under Plan B MUST respond in a manner to give permission, encouragement, and support using the following guidelines: 1. Permission: "Tell me more about what you are thinking and feeling." 2. Permission/Encouragement: "Tell me what do you really want to accomplish in pursuit of this idea." 3. Permission/Encouragement: "Tell me about the various plans you have considered." 4. Encouragement: "Many of your ideas have merit." 5. Encouragement/Support: "We need to find other people who share your issue and see what other plans and solutions they can offer." 6. Support: "We need to find other resources of information that you can consider in your planning." From the Kitty Room. by Cass Irvin. Cass Irvin, former publisher of The Disability Rag, now directs Access to the Arts, Inc. Her book focusing on FDR is being published by Temple University Press. Ourselves, our lives, our times, our truths, our culture. Do we collect it all piece by painful piece, or do we invent it? Does it matter? We've patched together our lives after years of disability, and now we're patching together our culture after decades of fragmentation. We're reinventing ourselves personally, and now we're doing it collectively. --Barry Corbett, writing in the August, 1998 issue of New Mobility. I believe I've finally made the circle. I fled from this room in 1973; I went out from here free at last to live my own life. And now, twenty-five years later, I'm back. I'm here in the room where I spent much of my childhood. This time by design. I remember when I was twelve noting in my diary that I had spent a whole month -- 30 days - - in this room. Never leaving the room. Never leaving my bed, actually. I was a classic case of "bedridden." It was easier on my mom if I didn't get out of bed and up in my wheelchair. So I didn't. This is not a big room. It's smaller still if it's your whole world. For too many years, it was my whole world. In 1954 I got polio. I couldn't walk anymore, so I couldn't go back to the room upstairs I shared with my sister. This room beside the kitchen, the room that had been a nursery, then Daddy's den, the room with the big corner windows became my room and, for too long, my whole world. I was educated in this room from fifth grade through high school. They called it "Home Instruction for the Homebound." I called it "home tutoring" to try to make it sound a little prestigious. In reality it was an inadequate education. How much can you learn in two hours, one day a week? I missed adolescence -- I was here instead of in school. (I was able to attend high school for only two hours a day, and then only during junior and senior years). I lived in this room through college and graduate school. And all the while, I used my wheelchair only when I went out. The rest of the time, I was in my bedroom, in bed. Not asleep, not incapacitated or sick. Just -- in bed. My family had a woman come in several times a week; that's all the personal assistance I had, other than my family. Staying in bed just made everything easier. Once I moved out of my parents' house into my own apartment, I still stayed in the bed a lot (It is really true that some people can be more functional in bed). These rooms, though, were very different from the one I stayed in at my parents' house. In every apartment, in every house I rented, I claimed the biggest room for my bedroom. Many years later, I moved back to my childhood home after my parents had gone. I made this old bedroom into my dining room. The house has a perfectly beautiful dining room -- but I made this room my dining room because, I reasoned, it's the room you're in the least. When I moved back to this house, I knew I had to deal with sad memories. Sometimes I would sit in my old bedroom (newly christened the dining room) where my bed used to sit and see if it felt or looked the same. The view out the corner windows was the same, but trees are larger and the woods out back seem steeper than I remember (perhaps the rumor about the hill moving is true). I recognized the black circle stain on the floor where the 30-pound weight had sat when not hanging from a rope from the ceiling with me hanging on the other end in a head sling. The aim had been to "straighten my back." I had hung there for at least twenty minutes a day. How many days, months, years? I don't remember. It's taken me years to feel comfortable about being in this room. I had many sad times here; I was alone a lot. The years I didn't go to school I was very isolated. I didn't have neighborhood friends. There were no independent living centers back then; no disability groups except for crippled children charities. My mom said I was not like other crippled kids so I did not associate with them. My mom influenced me a lot: the lessons I learned about disability from her were not accurate. I learned early on not to be a burden. It was easier on my family, for instance, if I didn't wake them in the night. So I learned to occupy my mind with something else. I would concentrate on whatever was keeping me awake and use my imagination to find a way to make it go away. Sometimes I would become the main character in Topper (a TV show at the time) and have the ghosts in the house help me, like he did -- but instead of them moving furniture around and scaring people, my ghosts would move my foot to take pressure off my heel, or get me a drink of water, or put my blanket on. With all that concentrating of my imagination, I'd usually fall asleep --and then wake, suddenly, realizing I was still cold. Other nights I'd simply wish myself to sleep. It seems odd to me now, but I never wished for cure. For some reason, I think, I figured that it wasn't a good idea to wish for something too big -- better to wish for something that might have a chance of coming true. I thought about the kids I been in the hospital with and the things they could do. Some could walk, some couldn't sit up by themselves. After much deliberation, I decided to wish for a straight back, strong lungs and the ability to use my arms again. My legs? I knew kids who walked; walking was nothing. President Roosevelt didn't walk and he did OK. I could handle being in a wheelchair. I knew if I could use my arms, I could do most things: get in and out of my chair, get dressed, go to the potty. Soon I'd realize my wishing did no good, and I'd decide that I must be wishing for too much, that maybe I should scale down my wishes so I could get one to come true. Before the night was over, I'd be wishing, "Just arms! Arms are the most important!" If I could just use my arms, I could do a lot, I knew. Legs were expendable, straight backs were expendable. Maybe I would never have had these wishes at all if mother had taken care of me better. Sometimes I wished I was still in the hospital, because there I could turn on my signal light and someone would come to help me. When I remember the times I was unafraid and unalone as a child, I find that those were the times was when I was at Warm Springs, Ga. It's a paradox to think an institution can be liberating. But for me it was. I was with kids there, kids like me. I was not confined there as I was at home. Life was accessible to me there. There I learned about life with a disability and how to get along in the world--life lessons. My family, who had little experience with disability, couldn't teach me that. Some of my friends think I'm obsessed with Warm Springs. But it's a big part of my childhood and adolescence. It's a part of who I am, it's a part of my heritage. A part of my culture. Back in 1982, I wrote in The Disability Rag that "Unlike most minority groups, we do not have our own culture and traditions." I was wrong. But I wrote it because at that time I did not have a clear idea what our "culture" was. I thought of culture as one's background, one's mom and dad, one's grandparents. I saw culture as being where one came from. My ancestors were French, German and English; my home, Louisville, has Churchill Downs, and horse racing, too, is part of my background. I'm proud of my heritage, my family background, history, those things that form you as a family, as an ethnic group -- and at the time I wrote that piece in The Rag, I didn't see disability in my culture. My dictionary defines culture as "customary beliefs, social forms, and material traits of a racial, religious or social group." Psychologist Carol Gill once said in The Disability Rag that we people with disabilities are "cultural foster children." "It's hard to know who we are," she said. My parents taught me everything I needed to know about where I came from and where I was projected to go -- but they could do nothing to prepare me for life with a disability. Since the majority of us come from nondisabled parents, too many of us think of ourselves as not disabled. Thus we think we can't connect to disability culture. We don't grow up with others in our family who've also had the experiences we're now having. We are, for the most part, alone. Not wanting to be alone made me look for family at Warm Springs. That, and my reverence for Franklin D. Roosevelt, generated my search for disability family. I wanted to be a part of his Warm Springs family, but I was born too late. I found a part of it nonetheless. Many disability activists criticize FDR, suggesting that he's a bad model. I think they make a mistake, taking him out of his time and basing their judgments on 1990s sensibilities, not judging him in his own time as, I believe, he should be judged. I have learned a great deal about disability in America from Franklin Roosevelt. He ran the country from his bed. To me that's a disability hero. It was my belief in looking toward the past for lessons that sent me looking at my past. Looking at my past meant dealing with the memories of this old bedroom. I felt the oppression and the loneliness when I first came back to this room. It has taken time, and growing, for me to be able to put those memories, those feelings in the place where they belong. I realize now I was pretty lucky. I was not poor, my family could afford a child with a disability. Still I was a back room person. My neglects, I discovered, were from misinformation, misconceptions and a lack of adequate personal attendant services. Several years ago we fixed up this the room. We repainted it, carpeted it, and I turned it into my office. It's the only carpeted room in the house. My kitties love it. There are other rooms in this house I could have chosen as my office. But I chose this one -- to reclaim my memories, my history; and to learn from what I experienced. Growing up with a disability in America is to experience unconventionalism, confinement and oppression. We have to acknowledge that part of our culture has been oppression: physical, economic, educational, institutional -- oppression not always acknowledged; but real nevertheless. It's sad that part of our past was painful, but it's a tragedy if we don't learn from it. That's why disability folks are coming together and getting involved. That's why we're chronicling and reclaiming our history, why we're teaching disability history, and why we're starting to write about it from our perspective. We are building a disability family, celebrating our culture. "Skeptics notwithstanding, disability culture is incandescent and spreading," Carol Gill said. "I'm still betting on it to warm this tired world." I've come back to this room because this is my room. And because I'm expecting those memories give me the energy to help celebrate our culture. WE ARE WHO WE ARE...SO WHO ARE WE? Musings on the path to a definition of "Disability Culture." by Steven E. Brown Saturday morning. The sun is shining. I sit contentedly in my living room chair fulfilling a volunteer commitment. Baking pleasantly in the warmth, and the light, I am energized. I finish the volunteer work; I complete some light reading; I retrieve my pile of disability culture research notecards waiting to be organized and filed. I feel productive. I am contemplative. Before I can stop myself my brain is racing into an approach and definition of disability culture I think might be livable. How many cultural definitions or characteristics might one find in the above paragraph? Sun- worshipper? Volunteer? Workaholic? Reader? Philosopher? What would make any of the above words into cultures? What would make me a member of such a culture? It's been ten years since I first started mulling over the concept of disability culture. During the first five of those years I was a passionate, though sporadic, investigator of the concept. I facilitated and participated in some panels that discussed the subject. I began to promote the concept. During the past five years I have moved from passionate investigator to an acknowledged authority" (and to what cultures does that appellation belong?). I am writer, promoter, advocate, expert, co-founder of the second institution specifically about disability culture, teacher, student, poet, and so forth. And yet when someone asks for a definition of disability culture I am hard-pressed to respond in a way that will make sense to both of us. I have never had a handy one sentence or paragraph explanation of the concept. One reason for this is that the words themselves are full of controversy. "Disability" is defined differently in various parts of the world, by distinct cultures, by diverse outlooks on life. What once was a disability may no longer be, for example, certain visual needs which can be corrected with the use of glasses (and who hears the phrase spectacle-bound?). The United Nations has spent more than ten years and who knows how many people hours attempting to define disability, handicap, and impairment for a classification system. The endeavor continues. "Culture" is a word just as value-laden. There may be as many definitions as there are people working in the field of "cultural studies" (which did not exist several years ago). I am loosely defining that field, for the purpose of this essay, as anyone who chooses to pursue cultural issues. When I began to write about disability culture I felt much more comfortable with my ability to define "disability" than "culture." So I started searching for definitions of culture. I quickly learned how many definitions and controversies about the word and its meanings existed. So I did as I was taught many years ago. I looked it up in the dictionary. The 1973 Random House Unabridged Dictionary, which happens to be the one I use at work, defines culture as "the sum total of ways of living built up by a group of human beings and transmitted from one generation to another." Shortly after copying this definition I came across another. I don't know its origin, but its definition is a "totality of socially transmitted behavior patterns, arts, beliefs, institutions, and all other products of human work and thought characteristic of a community or population." I did find one other definition useful: one is a part of a culture if they think they are. I did not note the source of this definition-it seemed too simple, I guess. But the phrase, or a variation of it, shows up frequently, including in my own writing. The problem with these definitions is the same obstacle that is the problem with any definition that is not commonly accepted--they generate controversy. So, as I sat radiating in the sun this morning, I started thinking about the definition and my inability in developing an argument defining disability culture that gave me comfort. I seemed to have hit upon some clues. Let's see... What, I wondered for the first time, if I analyzed similarities that the various definitions of culture seemed to share? An appallingly simple answer resulted: Each definition of culture is trying to place the concept in some sort of context. Either one is a part of a culture because one fits the context or one is not for the same reason. What then is the reason for such emphatic need to develop context and ensure its integrity? Henry Adams wrote more than a century ago, "order is the dream of man, chaos is the law of the universe." Context is order. If we can figure out to which culture, or context, we belong, then we can put the rest of humanity in order, that is in context, either as a member or an outcast of our culture, our context. As any activist in any social, political, cultural or other movement can verify, belonging is about naming, claiming, and proclaiming. We all do this all the time. I claim, for example, to have a disability, to be a writer, to be a husband, and to be a father. Naming these identities is the same as making a claim to them. When I claim to be a writer I also proclaim myself a member of a group of people who write. Others may write who do not make such a proclamation. Are they not writers? Indeed, they are. But they choose not to claim to be a member of the group. Meaning they refuse, for whatever reason, to put themselves into the context, the order of the group of writers. If I find out you are a writer who does not choose to proclaim yourself by that label, I can either choose to accept you as you are or try to change you. In either case I am making a choice to put you into an order, a context. Who am I to do this to you? Exactly. The debate about definitions is not a debate primarily about the literal meaning of a word. It's a debate about power. Who has the power to create and apply definitions? In this specific case, who has the power to create and apply definitions of culture? For the most part, the people who have claimed-- and proclaim--that power have been academicians in the fields of anthropology, psychology, history, sociology, and other so-called social sciences. There may be all sorts of reasons for this act of power. People who are formulating definitions may believe that they have the most knowledge about the concept and therefore the most right to implement their own beliefs. They may just as easily believe that they have spent many years of their life acquiring this knowledge and because of it the position to formulate definitions. They may also believe that others who have not experienced their long quest for knowledge and position have little right to question their judgment. Or they could just as easily fear that when someone questions their judgment they will lose their power. In any case, the motivation for claiming expertise is power. The power to name, the power to define, the power to proclaim, the power to place people into a context, an order which fits the vision of the person doing the naming, claiming, and proclaiming. Many people who have had the power to define culture have chosen to state, in one variation or another, that you cannot be a part of a culture because you think you are. Why not? Who makes this rule? If I choose to say I am a member of the disability culture who is anyone else to oppose this proclamation? A doctor, social worker, psychologist, politician, (and so forth) who say I do not have a disability? Who are they to make this judgment? Do I have a disability if I think I do? Who is the expert, the person in power, who can argue I do not have this right? If I choose to state I am a member of the disability culture who is anyone else to oppose this claim? An anthropologist, sociologist, psychologist, historian, and so forth who says I have no culture to which to belong? Who are they to make this judgment? Do I have a culture if I think I do? Who is the expert, the person in power, who can argue I do not have this right? If I do not give them the power no one has these rights. If I do give them the power, then everyone has those rights. This makes the debate, the controversy over definition a fight over who has the power of naming, claiming, and proclaiming a disability culture. I believe I have this right for myself. I am unwilling to give it to anyone else. I have the power. Of course, the entire preceding debate is moot. Because while we may argue about its existence or characteristics the culture itself goes on with or without us. Art is burgeoning. Writing is increasing. Teaching is taking place. Children are learning about their history. Values are being explored. Music is being composed. Humor is generating laughter. Members of the culture are being born and dying. Life goes on. The debate itself, while perhaps irrelevant, goes on as well. And because I am a part of that debate, I offer a definition of disability culture as follows: People with disabilities have forged a group identity. We share a common history of oppression and a common bond of resilience. We generate art, music, literature, and other expressions of our lives and our culture, infused from our experience of disability. Most importantly, we are proud of ourselves as people with disabilities. We claim our disabilities with pride as part of our identity. We are who we are: we are people with disabilities. You now have the choice to accept, reject, or refine this definition. The power is yours--if you take it. Copyright 1996, MAINSTREAM, Magazine of the Able-Disabled, the national news, advocacy and lifestyle magazine for people with disabilities. Reprinted with permission. MAINSTREAM provides essential reading on recreation, travel, social and political issues, new products, technology, employment and education. One-year subscription $24. Sample copy $5.00. Also available on computer disk (ASCII) and on audiocassette tape. Write: MAINSTREAM, 2973 Beech Street, San Diego, CA 92102. Disability Rights ADA IQ Test The Americans with Disabilities Act: A Brief Overview American with Disabilities Act Requirements Fact Sheet A Parents Guidebook on the Civil Rights of Individuals with Disabilities Summary of Disability-Related Legislative Initiatives ADA IQ TEST GENERAL There are approximately million people in the United States with a disability. 49 20 5 d. One-half Approximately how much does the Federal government spend on disability benefits and programs annually? Up to but not over $100 million Up to but not over $500 million Up to but not over $10 billion d. Over $100 billion If you live to the age of 70, the chance of you having a disability is: 12% 28% c. 55% d. 82% The ADA addresses disability issues as they relate to: Employment Public accommodations Telecommunications All of the above 5. The Disabled Access Tax Credit offers an annual tax credit to eligible small businesses for removing physical and communication barriers of up to 50% of expenditures which: Exceed $250 but do not exceed $1,250 Exceed $250 but do not exceed $7,250 c. Exceed $250 but do not exceed $1O,250 d. Have unlimited dollar amount 6. Title II addresses issues related to: a. Telecommunications b. Miscellaneous provisions c. Employment d. Public programs and services of state and local government 7. Title III addresses issues related to: a. Employment b. Public accommodations operated by private entities c. Telecommunications d. Public services of state and local government 8. Title IV addresses issues related to: a. Telecommunications b. Miscellaneous provisions c. Employment d. Public services of state and local government EMPLOYMENT 9. Which agency can help answer ADA employment and reasonable accommodation questions? JAN (Job Accommodation Network) 1 -800-ADA-WORK/232-9675 b. The 10 regional ADA Technical Assistance Centers 1-800-949-4232 c. EEOC (Equal Employment Opportunity Commission) 1-800-669-4000 d. All of the above 10. Before taking an employment action such as recruiting, advertising or hiring, it is important to identify: a. Essential job functions b. All responsibilities associated with the job Jobs that are likely to be difficult for applicants with a disability 11. Approximately 50% of accommodations for people with disabilities will cost: $1 to $100 $0 to $50 Under $500 d. Alot 12. Which of the following actions could be considered a reasonable accommodation for applicants or employees with a disability: Restructuring a job Modifying work schedules Modifying examinations d. All of the above 13. The ADA prohibits an employer from inquiring as to whether a prospective employee has a disability. True or False? 14. The employment provisions of the ADA are applicable to entities, organizations, and private businesses which employ 15 or more employees and to all Title II entities regardless of size. True or False? 15. The manner in which tests and training are administered may need to be modified to provide equal employment opportunities. True or False? STATE & LOCAL GOVERNMENT 16. State and local governments need not remove physical barriers, such as stairs, in all existing buildings, as long as they make programs accessible. True or False? 17. Does a municipal performing arts center that provides inexpensive balcony seats and more expensive orchestra seats have to provide access to the balcony seats? Yes or No? 18. Cathy, a person with a disability, stops at a rest area on the highway. Cathy requires assistance in order to use the toilet facilities and her only companion is a person of the opposite sex. Permitting a person of the opposite sex to assist Cathy in a toilet roon. designated for one sex may be a required reasonable modification of policy. True or False? 19. A public entity is designing and constructing, a playground. Because there are no UFAS or ADAAG standards for playground equipment, the equipment need not comply with these specific design standards. The Title II requirements for equal opportunity and program accessibility, however, may obligate the public entity to provide an accessible route to the playground, some accessible equipment and an accessible surface for the playground? True or False? PUBLIC ACCOMMODATION 20. The effective date for Title III: Public Accommodations was: January 26, 1992 July 26, 1992 January 26, 1993 d. July 26, 1994 21. All of the following are considered places of public accommodation according to the ADA with the exception of: Restaurants Retail stores and theaters Private clubs and religious organizations d. Amusement parks and private schools 22. A public accommodation should take measures to comply with the barrier removal requirements in which order of priority? 1) service areas 2) entry 3) restrooms 1) restrooms 2) entry 3) service areas 1) entry 2) service areas 3) restrooms d. All have equal priority FACILITY ACCESS 23. To accommodate wheelchair access to a facility, door width should be at least: 36" 30" 32" d. Depends 24. When a door has a closer, how long should a door take to move to a point of 3" from the latch from an open position of 70 degrees? At least 3 seconds At least 5 seconds At least 10 seconds d. It does not matter 25. The maximum slope of a ramp in new construction shall be: 1:10 1:12 1:16 d. Ramps are not required in new construction 26. For self-parking areas with up to 100 spaces, accessible parking shall follow the minimum standards: 1 out of 5 1 outofl5 1 out of 25 d. No accessible spaces required 27. One in every eight accessible parking spaces (but not less than one) must meet van accessibility standards and be designated "van accessible". True or False? 28. Accessible parking spaces may be designated either by a vertical sign or by a pictogram painted in the space. True or False? 29. Examples of businesses which are covered by Title III include theaters, laundromats, retailers and medical offices. True or False? 30. In general, service animals may not be prevented from entering places of businesses. True or False? ADA IQ QUIZ ANSWERS GENERAL 1. A 2. D 3. D 4. D 5. C 6. D 7. B 8. A EMPLOYMENT 9. D 10. A 11. B 12. D 1 3. True 14. True 1 5. True STATE & LOCAL GOVERNMENT 1 6. True 17. No (if accessible seats and companion seats are provided at balcony prices in orchestra section. 1 8. True 1 9. True PUBLIC ACCOMMODATIONS 20. A 21. C 22. C FACILITY ACCESS 23. C 24. A 25. B 26. C 27. True 28. False 29. True 30. True (as long as legitimate safety or health issues are not involved.) The Americans with Disabilities Act: A Brief Overview Disclaimer; This is a brief overview which cannot possibly set fort everything about the ADA and which, for purposes of brevity or as part of an effort to state legal concepts simply and in plain English, may describe the law in a manner which is not necessarily precise and/or accurate in every respect. Signed into law on July 26 1990, the Americans with Disabilities Act is a wide- ranging legislation intended to make American Society more accessible to people with disabilities. It is divided into five titles: 1. Employment (Title I) Business must provide reasonable accommodations to protect the rights of individuals with disabilities in all aspects of employment. Possible changes may include restructuring jobs, altering the layout of work stations, or modifying equipment. Employment aspects may include \the application process, hiring, wages, benefits, and all other aspects of employment. Medical examinations are highly regulated. 2. Public Services (Title II) Public services, which include state and local government instrumentalities, the National Railroad Passenger Corporation, and other commuter authorities, cannot deny services to people with disabilities participation in programs or activities which are available to people without disabilities. In addition, public transportation systems, such as public transit buses, must be accessible to individuals with disabilities. 3. Public Accommodations (Title III) All new construction and modifications must be accessible to individuals with disabilities. For existing facilities, barriers to services must be removed if readily achievable. Public accommodations include facilities such as restaurants, hotels, grocery stores, retail stores, etc., as well as privately owned transportation systems. 4. Telecommunications (Title IV) Telecommunications companies offering telephone service to the general public must have telephone relay service to individuals who use telecommunication devices for the deaf (TTYs) or similar devices. 5. Miscellaneous (Title V) Includes a provision prohibiting either (a) coercing or threatening or (b) retaliating against the disabled or those attempting to aid people with disabilities in asserting their rights under the ADA. The ADA's protection applies primarily, but not exclusively, to "disabled" individuals. An individual is "disabled" if he or she meets at least any one of the following tests: 1. He or she has a physical or mental impairment that substantially limits one or more of his/her major life activities; 2. He or she has a record of such an impairment 3. He or she is regarded as having such an impairment. Other individuals who are protected in certain circumstances include those, such as parents, who have an association with an individual known to have a disability, and those who are coerced or subjected to retaliation for assisting people with disabilities in asserting their rights under the ADA. While the employment provisions of the ADA apply to employers of fifteen employees or more, its public accommodations provisions apply to all sizes of business, regardless of number of employees. State and local governments are covered regardless of size. AMERICANS WITH DISABILITIES ACT REQUIREMENTS FACT SHEET U.S. Department of Justice Civil Rights Division Coordination and Review Section CRD-20 GPO : 1990 0 - 273-184 EMPLOYMENT Employers may not discriminate against an individual with a disability in hiring or promotion if the person is otherwise qualified for the job. Employers can ask about one's ability to perform a job, but cannot inquire if someone has a disability or subject a person to tests that tend to screen out people with disabilities. Employers will need to provide "reasonable accommodation" to individuals with disabilities. This includes steps such as job restructuring and modification of equipment. Employers do not need to provide accommodations that impose "undue hardship" on business operations. Who needs to comply: All employers with 25 or more employees must comply, effective July 26, 1992. All employers with 15-24 employees must comply, effective July 26, 1994. TRANSPORTATION New public transit buses ordered after August 26, 1990, must be accessible to individuals with disabilities. Transit authorities must provide comparable paratransit or other special transportation services to individuals with disabilities who cannot used fixed route bus services, unless an undue burden would result. Existing rail systems must have one accessible car per train by July 26, 1995. New rail cars ordered after August 26, 1990, must be accessible. New bus and train stations must be accessible. Key stations in rapid, light, and commuter rail systems must be made accessible by July 26, 1993, with extensions up to 20 years for commuter rail (30 years for rapid and light rail). All existing Amtrak stations must be accessible by July 26, 2010. PUBLIC ACCOMMODATIONS Private entities such as restaurants, hotels, and retail stores may not discriminate against individuals with disabilities, effective January 26, 1992. Auxiliary aids and services must be provided to individuals with vision or hearing impairments or other individuals with disabilities, unless an undue burden would result. Physical barriers in existing facilities must be removed, if removal is readily achievable. If not, alternative methods of providing the services must be offered, if they are readily achievable. All new construction and alterations of facilities must be accessible. STATE AND LOCAL GOVERNMENT State and local governments may not discriminate against qualified individuals with disabilities. All government facilities, services, and communications must be accessible with the requirements of section 504 of the Rehabilitation Act of 1973. TELECOMMUNICATIONS Companies offering telephone service to the general public must offer telephone relay services to individuals who use telecommunications devices for the deaf (TDD's) or similar devices. This document is available in the following accessible formats: Braille, Large print, Audio tape, Electronic file on computer disk and electronic bulletin board 202 - 514 - 6193. For more information about the ADA contact: U.S. Department of Justice Civil Rights Division Coordination and Review Section P.O. Box 66118: Washington, DC 20035-6118 202 - 514 - 0301 (voice) 202 - 514 - 0381 (TDD) 202 - 514 - 0383 (TDD) THIS DISK COPY WAS PRODUCED BY: BRAILLE LINE, INC. 3901 N. Vincent Ave., Peoria Heights, IL 61614 309 686 - 0855 ILRU IL Library - ADVOCACY Archives A Parents Guidebook on the Civil Rights of Individuals with Disabilities Document Date: 7/94 AREA: Advocacy CATEGORY: Grassroots Advocacy TITLE: A Parents Guidebook on the Civil Rights of Individuals with Disabilities SUBJECT: Children's Rights AUTHOR: Cape Organization for Rights of the Disabled ANNOTATION: A brief manual for to help parents understand the civil rights of their children and encouraging them to fight for those rights. DATE: 7/94 TYPE: Brochure LENGTH: 15 pages COST: Free SOURCE NAME: Bill Henning SOURCE ADDRESS: CORD, 114 Enterprise Road, Hyannis, MA 02601 SOURCE TELEPHONE: 508-775-8300 SOURCE TTY: 1-800-541-0282 SOURCE E-MAIL: cordwin@capecod.net URL: http://ne-index.shriver.org/Factsweb/21a6.htm Cape Organization for Rights of the Disabled Your Child's Rights in the New World A Parents Guidebook on the Civil Rights of Individuals with Disabilities This guidebook was adapted and developed by the Cape Organization for Rights of the Disabled (CORD) from a grant from the Administering Agency for Developmental Disabilities and the CORD Peer Assistive Technology Project, which is funded by a grant from the National Institute on Disability and Rehabilitation Research, U.S. Department of Education, and administered by the Massachusetts Commission for the Deaf and Hard of Hearing. The contents of this publication do not necessarily imply endorsement by the U.S. Government Edited by: Lisa Canto Nikula Program Coordinator Cape Organization for Rights of the Disabled (CORD) July 1994 Hyannis, MA This guidebook contains the work of many people. We would particularly like to thank the Maine Consumer Information and Technology Training Exchange (CITE) Project for allowing us to quote their Parent Guidebook to Assistive Technology; and the Massachusetts Assistive Technology Partnership (MATP) Cente r for producing Assistive Technology: A Basic Training Manual from which much of this publication was reproduced. Other publications used to compile this guidebook are: Discrimination on the Basis of Disability: Federal and Massachusetts Law The Disability Law Center of Massachusetts and the N. Neal Pike Institute on Law and Disability Community Access Monitor Project Massachusetts Office on Disability What Fair Housing Means to People with Disabilities? The Mental Health Law Project for the National Fair Housing Alliance The Americans with Disabilities Act Questions and Answers U.S. Equal Employment Opportunity Commission U.S. Department of Justice Civil Rights Division Employment Discrimination Against People with Disabilities: How to Fight Back in Massachusetts Ernest Winsor and others IMPORTANT LEGAL NOTIFICATION The Cape Organization for Rights of the Disabled, though having the highest respect for all persons and organizations which provided legal information for this guidebook, cannot practically attest to absolute accuracy of every bit of information that is provided. Furthermore, legal interpretations change and evolve over time and laws are amended. CORD encourages persons exercising their legal rights to consult, whenever feasible, with an attorney, an advocacy or legal services agency, or the body over seeing and enforcing a law. Table of Contents Your Child's Rights in The New World ........................ 3 An introduction Advocating and Understanding a Child's Rights ............. 5 Building the knowledge base to protect your rights Appropriate laws, areas of coverage and established rights What To Do When Your Rights Are Not Being Protected .......... 15 When to enlist the assistance of outside advocates Finding Help Along The Road to Independence .................. 16 Independent Living Centers Directory of Resources ....................................... 16 Other helpful resources YOUR CHILD'S RIGHTS IN THE NEW WORLD Families of children with all kinds of disabilities know the tug of the Old World. Not far behind us is the world that saw all "handicapped" kids as very different from every other child and very much like each other. The Old World always put "handicapped " kids on segregated buses, sent almost all "away" or to "special" schools. Up ahead, but still far away, was an unfamiliar world of acceptance and accessibility. In recent years there has been a steady coming apart of the Old World: segregated buses are rarer now, fewer babies and children are sent away, many buildings are accessible, some services have been modified and some attitudes have changed. But the road to our children's success is hardly smooth; it remains a rough and rocky road. This guidebook is intended to help families move along the road to accessibility, equality and acceptance with the confidence that comes from knowledge. It also is intended to provide valuable information to those, such as teachers and school administrators, who play especially critical roles in children's lives. Our children will succeed by combining their strength, their parents' encouragement, help from skilled professionals, and an understanding of the rights guaranteed them by state and federal law. Equal access is a civil right. A free and appropriate public education is not a gift. The ADA is not a dream, it's the law. Know your rights! The answers to the following questions are YES!! Is the school responsible for paying for my child's assistive technology? Can my son take home his computer from school so he can do his homework? Must a hospital provide an interpreter for a deaf child affending a hospital-sponsored sibling class? Is it against the law for a school to prevent a student who uses a wheelchair from going on a field trip because the bus doesn't have a lift? Is HIV or AIDS considered a disability? The local library has story hour in an inaccessible location; can I request them to move this to an accessible site? Must a landlord allow me to build a ramp onto my rental unit? Is there a place to get a hands-free phone for my child with limited dexterity? If I file discrimination charges on behalf of my child are there any laws that protect me from retaliation? Can the school provide a reader for my child with low vision? Should I expect my town-sponsored swimming lessons to provide access? ADVOCATING AND UNDERSTANDING A CHILD'S RIGHTS Parents and people with disabilities have a vital role to play in the lives of children with disabilities. They can help develop self-esteem, independence, self-respect, control, and decision making. They also can develop an understanding that for both kids and adults with disabilities-- just as for all kids and adults--it is proper to try many things and it is alright to fail. The shackle of overprotection has snuffed the spirit of many a person with a disability. In striving to reach all of these goals, whether it is the parent speaking as an extension of their child, or the child speaking for themself as they get older, self advocacy is often a vital tool. Following is information that can help parents and persons with disabilities to communicate for themselves, to make decisions for themselves, and to have the knowledge to defend their rights. The first section discusses appropriate laws and areas of cover age. The subsequent section further explains the laws and the rights they establish. What laws guarantee the rights of persons with disabilities to an education? If a person has a disability and is a Massachusetts resident, the primary source of protection for the purposes of preschool, elementary, and secondary education is a law, which is commonly referred to as Chapter 766. Chapter 766 is designed to define the needs of children requiring special education in a broad and flexible manner, to minimize the possibility of stigmatization, and to maximize the child's development in the least restrictive environment. This law is incorporated by reference into a federal special education law that is similar to Chapter 766, which is called the Individuals with Disabilities Education Act (IDEA). The other laws that protect individuals with disabilities in the educational settings include Section 504 of the Rehabilitation Act of 1973 Rehab Act); the Americans with Disabilities Act (ADA); Article 114 of the Massachusetts Constitution; and Massachusetts General Law Chapter 151C, which prohibits educational institutions from excluding students who are blind or deaf or require the use of a guide dog. What laws prohibit discrimination on the basis of disability in places of public accommodation? Title III of the Americans with Disabilities Act prohibits discrimination against people with disabilities by any privately owned public accommodation whose operation "affects interstate commerce." Public accommodations include the following types of business (this is not a complete list): inns, hotels, motels, restaurants, bars, movie houses, theaters, stadiums, stores, shopping centers, laundromats, funeral parlors, gas stations, the professional office of a health care provider, hospitals, depots, museums, libraries, parks, zoos, places of recreation, day-care facilities, senior citizen centers, homeless shelters, gymnasiums, golf courses and other places of public gathering, recreation, education, service establishments and places specific to public transportation. The Massachusetts Public Accommodations Law has many similarities with the ADA and a few important differences. It is much less detailed that the ADA and has no regulations explaining it. However, it is likely that the Massachusetts Commission Against Discrimination (MCAD) and the courts enforcing the Mass. law will apply the more detailed requirements of the ADA to the Mass. law except where those requirements explicitly conflict with it. The Massachusetts law is more inclusive in that it includes government-owned public accommodations. An individual discriminated against by a public accommodation may also file a lawsuit under Amendment 114 of the Massachusetts Constitution. What laws protect the right to access public transportation? Title II of the Americans with Disabilities Act requires that nearly all public transportation systems, including buses, subways, light rail, commuter trains and intercity trains, be made at least partially accessible over time to people with disabilities. Although the passage of the ADA has minimized the importance of Section 504 of the Rehabilitation Act, Article 114 and the Massachusetts Public Accommodations Law, they may still be useful in cases where the ADA is not yet in effect and in cases where t he ADA may not apply (for example, private taxi service). The Air Carrier Access Act of 1986 prohibits discrimination against people with disabilities by U.S. airlines. What are the laws related to employment? The Rehabilitation Act of 1973 (Title V) as amended in 1978 is the first law that comprehensively prohibited discrimination in employment. Massachusetts followed suit in 1983 by amending its employment discrimination law, commonly referred to as Chapter 1 51B, to prohibit handicapped discrimination in employment. In 1990, Title I the Americans with Disabilities Act established broad federal prohibitions against discrimination in employment. What are the legal rights of persons with disabilities to be free from housing discrimination? Section 504 of the Rehabilitation Act affords persons with disabilities protection against discrimination only when federal financial assistance is received by the landlord. Title VIII of the Federal Civil Rights Act of 1968 was amended to prohibit discrimination on the basis of disability in 1988. The Federal Fair Housing Act and its state counterpart, Chapter 151B (commonly referred to as The Housing Bill of Rights) are more comprehensive and more explicit in their protections than Section 504. The Arch itectural Barriers Act of 1968 applies to buildings and facilities that, after August of 1968, are owned, leased or financed (partly or entirely) with federal funds. Also Article 114 and Massachusetts Executive order 246 may be applicable in ensuring equ al access to housing. What are the important pieces of legislation affecting the requirement of assistive technology and services? The Technology-Related Assistance for Individuals with Disabilities Act of 1988 (the "Tech Act") makes funds available to statewide projects and targeted projects of national significance to promote the provision of consumer-responsive assistive technology devices and services. Although the Rehabilitation Act of 1973 Sections 503, 504 and 509 does not provide any sort of direct funding for technology or related services specifically, it creates opportunities for individuals to obtain assistive technology from the many recipients of federal funds who must abide by the law. A special use of Section 504 is in the field of education. Additional amendments to the Rehab Act directly affect the provision of assistive technology services to clients of rehabilitation programs. The Individuals with Disabilities Education ACT (IDEA) entitles a child with a disability who is between the ages of 5 and 21 to an "Individualized Education Plan" (IEP) which must include, among other things, all "related services" needed to ensure an appropriate education, with the cost of these services to be borne by the school district. One policy letter on Assistive Technology from the Office of Special Education states that a district cannot presumptively deny assistive technology to a student with a disability and must determine on an individual case-by- case basis the need for such technology. Another policy letter stated that "if assistive technology is needed at home to meet a child's educational goals, school systems must allow assistive technology to be taken home" and that a school board cannot rewrite an IEP to exclude assistive technology and that a school cannot delay in providing the technology identified in an IEP. The TDD/SCPE Program (Specialized Customer Premises Equipment) made assistive technology equipment that allows individuals with disabilities to communicate over the telephone available to qualified Massachusetts residence telephone users. The equipment is available through NYNEX and is distributed by a number of agents across the state. Equipment is free of charge to those who qualify and have an individual income of $50,000 or less. This equipment includes telecommunication devices for the deaf (tty or tdd), telebraillers, artificial larynxes, signaling devices, amplifiers, amplified telephones, speaker phones, hands-free telephones, big button phones and one-number dialer telephones. The ADA specifically addresses assistive technology in its requirements. This legislation also creates opportunities for access to assistive technology in the areas of employment protection, public accommodations, transportation, government, and telecommunications. Not all Massachusetts Laws (Article 114, Executive Order 246, Mass Public Accommodations Laws, and 151B) mention assistive technology; however, the rights and protections they provide form the basis for equal access and equal rights for individuals with disabilities in the Commonwealth. These laws thus lend themselves to the potential provision of assistive technology, as individuals with disabilities increasingly find technology to be beneficial, and in some cases essential, to maximizing accessibility, independence, and equality. The Architectural Access Board Rules and Regulations include the provision of some types of assistive technology. What key law mandates architectural access in Massachusetts? While the ADA has critical provisions guaranteeing architectural access, the Massachusetts Architectural Access Board (AAB) rules and regulations do likewise, as they are "designed to make public buildings accessible to, functional for, and safe for use by physically handicapped persons." The AAB rules govern, among a number of items, the accessibility of buildings, public phones, parking lots, sidewalks, and elevators. As they are enforced within state, many advocates feel it is easier to work with the m on concerns and complaints than it is with officials overseeing federal access laws in Washington. Below is a listing of laws that protect the rights of persons with disabilities. 1. The Individuals with Disabilities Education Act of 1990 (IDEA), which is the re- authorization of the former Education of All Handicapped Children's Act of 1973. 2. The Technology-Related Assistance for Individuals with Disabilities Act of 1988. 3. The Americans with Disabilities Act. The Rehabilitation Act of 1973, amended in 1986 and 1992, and including Section 504. 5. Chapter 766 of the Acts of 1972: Massachusetts Special Education Law 6. The Massachusetts Architectural Access Board Rules and Regulations (521 CRM) 7. Fair Housing Amendments Act of 1988 8. Mass. Constitutional Amendment 114 (1980) 9. Executive Order 246 (1984) 10. Mass. Employment Discrimination Law (1983) - GL. c. 151B 11. Mass Fublic Accommodations Law (1 979) G.L. c. 272, sections 92A and 98 12. Air Carriers Access Act of 1986 1. The Individuals with Disabilities Education Act (IDEA) IDEA entitles all children, regardless of their disabilities, to a "free and appropriate public education" (FAPE). IDEA assures that the rights of children and their parents or guardians are protected. IDEA created three programs, addressing the needs of children between the age of 5 and 21, preschool children ages 3 and 4, and infants and toddlers. School districts are responsible for identifying, locating and evaluating children with special needs. T his includes children in all public and private agencies. After evaluation the school must develop an Individualized Educational Plan (IEP) or in the case of infants and toddlers an Individualized Family Service Plan (IFSP). IDEA also guarantees that, to the maximum extent possible, children with disabilities go to school with children their age who do not have disabilities. This covers academic as well as non- academic and extracurricular activities. Parents must be notified of meetings early enough to ensure the opportunity to attend. The school district must provide interpreters for deaf parents or for parents whose native language is other than English. "Related Services" must be provided as required to assist a child to benefit from special education. Examples of Related Services include transportation, assistive technology, physical and occupational therapy, psychological services, speech pathology and audiology, counseling, medical services for evaluation and diagnosis, physical education and therapeutic recreation. 2. The Technology-Related Assistance for Individuals with Disabilities Act (Tech Act) of 1988 The "Tech Act" makes funds available to statewide projects to promote the provision of consumer-responsive assistive technology devices and services. The Tech Act project in Massachusetts is the Massachusetts Assistive Technology Partnership (MATP). Th e MATP provides information about assistive technology; works on systems change related to assistive technology; and provides advocacy, training and referrals to funding resources. The MATP works to promote the benefits of assistive technology at the federal and state levels. .3. The Americans With Disabilities Act (ADA) The ADA is a federal antidiscrimination statute designed to remove barriers which prevent qualified individuals with disabilities from enjoying the same opportunities that are available to persons without disabilities. It protects individuals' rights when it comes to earning a living, using public accommodations, traveling by bus or rail, taking advantage of state and local government programs and services and communication. The ADA covers people who have a physical or mental impairment, have a record of such an impairment or are regarded as having such an impairment. Under Title I of the ADA, employers are prohibited from refusing to hire or rehire, firing, or otherwise discriminating against qualified disabled employees and applicants on the basis of disability. An employer covered under this section must make reasonable accommodations that will enable a person with a known disability to perform the essential functions of a job. Examples of reasonable accommodation include making existing facilities used by employees readily accessible to and usable by an individual with a disability; restructuring a job; modifying work schedules; acquiring or modifying equipment; providing qualified readers or interpreters or appropriately modifying examinations, training, or other programs. Title II of the ADA prohibits discrimination against qualified individuals with disabilities in all programs, activities, and services of public entities. It applies to all state and local governments, their departments and agencies, and any other instrumentality or special purpose districts of state or local governments. A state or local government and any of its departments or agencies may not refuse to allow a person with a disability to participate in a service, program or activity simply because the person has a disability. They must provide programs and services in an integrated setting, unless separate or different measures are necessary to ensure equal opportunity. Unnecessary eligibility standards or rules that deny individuals an equal opportunity must be eliminated. Those covered under Title II of the ADA must make reasonable modifications in policies, practices, and procedures that deny equal access to individuals with disabilities, unless a fundamental alteration in the program would result. They must furnish auxiliary aides and services when necessary to ensure effective communication and may not place special charges on individuals with disabilities to cover the costs of measures necessary to ensure nondiscriminatory treatment. Title III of the ADA covers public accommodations. Virtually all buildings and places open to the general public are considered "public" for the purposes of this Act, with the exception of private clubs and religious organizations. Places of public accommodation are required to make reasonable modifications in policies, practices, and procedures, unless doing so would fundamentally alter the nature of the goods or services being provided. Auxiliary aids and services must be provided unless an undue burden would result. Physical barriers in existing facilities must be removed if readily achievable. If not, alternative methods of providing services must be offered. Additionally, alteration of existing structures must be accessible to the extent that the added accessibility costs are not disproportionate to the overall alternation costs, and new construction must be accessible, effective January 26, 1993. The various transportation-related requirements of the ADA are included in Titles II and III. They state that new public transit buses and rail vehicles ordered after August 1990 must be wheelchair accessible and as of July 26, 1992, transit authorities must provide comparable paratransit or other special transportation services to individuals who cannot use fixed route bus services, unless an undue burden would result. Over-the-road buses, like Greyhound, must be accessible by July 26, 1996 or 1997, de pending on the size of the business. In addition transportation authorities must address issues of accessible signage, provision of TDD's in stations, alternative ways of announcing arrivals, departures and stops. Title IV of the ADA addresses telecommunications. It requires that companies offering telephone service to the general public must provide telephone relay services 24 hours a day for individuals with hearing or speech impairments. Also, television public service announcements that are produced or funded by the U.S. Government must include closed captioning of the verbal content. Title V covers miscellaneous provisions. Section 503 of Title V is Prohibition against Retaliation and Coercion. It is unlawful to coerce, intimidate, threaten, or interfere with any individual in the exercise or enjoyment of; or on account of his or he r having exercised or enjoyed, or on account of his or her having aided or encouraged any other individual in the exercise or enjoyment of; any right guaranteed or protected by this Act. No person shall discriminate against any individual because such individual has opposed any act or practice made unlawful by this Act or because such individual made a charge, testified, assisted, or participated in any manner in an investigation, proceeding, or hearing under this Act. 4. The Rehabilitation Act of 1973 (Section 504) Until the passage of the ADA in July of 1990, the "Rehab Act" was the most important and most frequently cited law prohibiting discrimination against people with disabilities. It is anticipated that judicial interpretations of the ADA will take into account the substantial body of law interpreting the "Rehab Act". Moreover it is the only law that prohibits discrimination by executive agencies of the federal governments. The most far-reaching section of the Rehabilitation Act is Section 504 which reads: No otherwise qualified individual with handicaps in the United States...shall, solely by reason of her or his handicap, be excluded from the participation in, be denied the benefits of; or be subjected to discrimination under any program or activity receiving federal financial assistance or under any program or activity conducted by any Executive agency or by the United States Postal Service. Examples of governmental entities that are likely to fall under 504 are housing authorities, public welfare agencies, state schools, public hospitals, public transportation systems, and public school systems. Examples of private entities covered by 504 include hospitals, privately operated subsidized housing, legal services organizations, nursing homes, rehabilitation facilities, organizations that provided services under contract with state or local government agencies, museums and other arts and cultural organizations. 5. Chapter 766 - Massachusetts Special Education Law Chapter 766 requires school systems to meet a higher standard than the federal law when providing special education services for all school-age children. 766 requires that special education services provide "maximum feasible benefit" or assure "maximum potential development" for students with disabilities in the least restrictive environment consistent with that goal. In other words special education services which include not only academic instruction, but also training in vocational, social and daily living skill and related services, must be provided in a setting which allows integration of students with and without disabilities to the maximum extent feasible. The Massachusetts Architectural Access Board Rules and Regulations (AAB) These rules and regulations are designed to make public buildings accessible to, functional for, and safe for use by individuals with disabilities. The AAB is in the process of revising its Rules and Regulations to achieve substantial equivalency with the ADA Accessibility Guidelines. New facilities must be constructed to comply with the AAB regulations. Any renovations made to facilities under AAB jurisdiction must comply with AAB regulations. The Architectural Access Board has the authority to grant variances if compliance with the regulations is technologically infeasible or if the cost of compliance is excessive and without any substantial benefit to people with disabilities. Local building inspectors have the authority to enforce the AAB regulations. Individuals may file complaints With the Architectural Access Board. If the AAB issues an order and the required changes are not made, that facility in violation of the regulations may be subject to fines of up to $1000 per day, per violation. 7. Fair Housing Amendments Act It wasn't until 1988 that Congress passed the Fair Housing Amendments Act to broaden and strengthen the 1968 law. The amendments added people with mental and physical disabilities and families with children to the list of people protected by the Act. Under the Fair Housing Amendments Act of 1988, many public and private owners, developers and operators of housing must change any policies and practices that have excluded people with disabilities. Furthermore, any new multifamily housing built to be occupied for the first time after March 13, 1991 must be architecturally accessible. The federal Fair Housing Act (FHA) as amended provides protection from housing discrimination for housing applicants, tenants and buyers with any kind of disability. People are also covered if they have a record of having a mental or physical disability or if they are being treated as if they have a mental or physical disability. 8. Massachusetts Constitutional Amendment Article 114 (1980) Article 114 states: "No otherwise qualified handicapped individual shall, solely by reason of his handicap, be excluded from participation in, be denied the benefits of, or be subject to discrimination under any program or activity with the Commonwealth. " Article 114 is broadly written; it prohibits discrimination on the basis of disability on any level within the state, by private business, nonprofit organizations, and state, county and municipal governments. 9. Executive Order 246 (1984) This Order prohibits discrimination and mandates affirmative action to ensure equal opportunity for people with disabilities in the Commonwealth. The requirements of this Order apply to state executive agencies' internal policies and practices, such as employment and the granting of licenses, as well as to recipients of state funding, including contract and grant recipients such as municipalities. Each agency under an executive office is supposed to create an affirmative action plan that includes goals and methodology for the placement of people with disabilities in the state's workforce. 10. Chapter 151 B - Mass. Employment Discrimination Law Chapter 151B prohibits the Commonwealth of Massachusetts and its political subdivision, boards and commission from discriminating. This statute also applies to most private employers, labor organizations and employment agencies. There are certain concepts and definitions that are common to all laws prohibiting handicap discrimination in employment. However, in some cases Massachusetts law may afford greater protections than similar federal laws. Chapter 151B covers all private employers with more than five employees with the exception of an exclusively social club or fraternal association or corporation if the club in not organized for profit. In simple terms this law says that it is unlawful for an employer, personally or through an agent, to discriminate against a person who is disabled because of his or her disability when that person claims to be a "qualified handicapped person." A qualified handicapped person is able to do the job but may (or may not) need some help for the employer to do it. The employer has to give that help unless the employer can show that it would be a real strain on the business to make that accommodation. 11. Mass Public Accommodations Law This law bans discrimination on the basis of disability in places of public accommodation, that is, any place that is open to and accepts the general public. The law prohibits discrimination not only in terms of architectural access but in terms of busin ess and services as well. Additionally, places of public accommodation cannot discriminate against a blind, deaf, or hard of hearing person, or any other person with a disability who uses a service animal. 12. Air Carrier Access Act of 1986 This Act prohibits discrimination against people with disability by U.S. airlines. The regulations require new aircraft to have certain accessibility features depending upon the size of the plane, including moveable armrests, space to store folding wheel chairs, accessible lavatory facilities, and an onboard wheelchair for use of passengers with disabilities. Airlines may not require an individual with a disability to travel with an attendant except under specified circumstances where an attendant is essential for safety. In most cases the airline may not charge a fare for an attendant mandated by the airline if the individual with a disability believes he is capable of traveling independently. Air carriers may not exclude disabled individuals from certain seating unless required by federal safety regulations. WHAT TO DO WHEN YOUR RIGHTS ARE NOT BEING PROTECTED It is not uncommon, despite the best self-advocacy, for people to still encounter frustrating and seemingly insurmountable barriers to attaining what is guaranteed under the law. Often what would seem the proper steps to address a concern have been taken: calls have been made, letters have been written, meetings have been held. Yet a restaurant still may not install an accessible restroom, or a doctor won't hire an interpreter, or a school won't purchase adaptive computer equipment. When barriers to access and participation arise, it may be time to enlist the assistance of outside advocates. It also may be time to seek legal redress. At the end of this guidebook is a list of resources that can assist parents and people with disabilities who need advocacy assistance as well as school systems that need clarification on laws and regulations. Also listed are those agencies which oversee enforcement of civil rights laws. CORD wishes to note that the recourse of filing a complaint or lawsuit is one that some people find easy and some will pursue with only the utmost reluctance. The Cape Organization for Rights of the Disabled encourages those who wish to file a complaint to enlist the support of an attorney or an advocacy group. Many times advocates are more versed in disability rights laws and complaints than private attorneys. In ten years CORD has assisted literally thousands of people to seek solutions to problems. And on hundreds of occasions, the consumer and advocate have decided it best to file a formal complaint to solve a problem. CORD has regularly assisted people to file successful complaints with, among many, the Massachusetts Department of Education, the Architectural Access Board, the U.S. Department of Justice, the Massachusetts Attorney Generals Office and the Massachusetts Commission Against Discrimination. The organization also has directed people to legal services that have assisted people to file suit and win punitive damages. For more information on filing complaints and to receive appropriate referrals, contact CORD at 1-800-541-0282 (V/TTY) or 508-775-8300 (V/TTY). FINDING HELP ALONG THE ROAD TO INDEPENDENCE. In Massachusetts there are independent living centers (ILCs) that provide a variety of services to individuals with disabilities and their families free of charge. ILCs serve as a strong consumer voice on a wide range of national, state, and local issues . ILCs also work to assure physical and programmatic access to housing, employment, transportation, communities, recreational facilities, and health and social services as well as providing advocacy services, skills training, information and referral, and peer support. Contact the ILC in your area for further information. ACCESS IS A CIVIL RIGHT! Content Public Domain Page Generation Copyright 1998 DIMENET and TNET Services All Rights Reserved Summary of Disability-Related Legislative Initiatives* National Vocational Rehabilitation Act of 1920 Established state/federal system of rehabilitation services. Social Security of Act of 1935 Established federal/state system of health services for "crippled" children; permanently authorized civilian rehabilitation program. Wagner-O'Day Act of 1938 Authorized federal purchases from workshops for people who are blind. Randolph-Sheppard Act of 1938 Authorized federal program to employ people who are blind as vendors on federal property. Vocational Rehabilitation Act of 1954 Authorized innovation and expansion grants, and grants to colleges and universities for professional training. Wagner-Peyser Act Amendments of 1954 Required federal/state employment security of offices to designate staff members to assist people with severe disabilities. Social Security Amendments of 1956 Established Social Security Disability Insurance Trust Fund and provided for payments to eligible workers who became disabled. National Defense Education Act of 1958 Authorized federal assistance for preparation of teachers of children with disabilities. Mental Retardation Facilities and Community Mental Health Centers Construction Act of 1963 Provided grants for construction of mental retardation research centers and facilities; provided for training of educational personnel involved with youth with disabilities; authorized grants to states for construction of community mental health centers. Mental Retardation Facilities and Community Mental Health Centers Construction Act Amendments of 1965 Established grant program to cover initial staffing costs for community mental health centers. Social Security Act Amendments of 1965 Established Medicaid program for elderly people and for blind persons and other persons with disabilities. Elementary and Secondary Education Act of 1965 Authorized federal aid to states and localities for educating deprived children, including children with disabilities. Elementary and Secondary Education Act Amendments of 1966 Created National Advisory Committee on Handicapped Children; created Bureau of Education for the Handicapped in U.S. Office of Education. Fair Labor Standards Amendments of 1966 Established standards for employment of workers with disabilities, allowing for subminimum wages. Elementary and Secondary Education Amendments of 1967 Authorized regional resource centers; authorized centers and services for deaf-blind children. Handicapped Children's Early Education Assistance Act of 1968 Established grant program for preschool and early education of children with disabilities. Vocational Education Act Amendments of 1968 Required participating states to earmark 10 percent of basic vocational education allotment for youth with disabilities. Architectural Barriers Act of 1968 Required most buildings and facilities built, constructed, or altered with federal funds after 1969 to be accessible. Developmental Disabilities Services and Facilities Construction Amendments of 1970 Expanded services to individuals with epilepsy and cerebral palsy; authorized new state formula grant program; defined "developmental disability" in categorical terms; established state-level planning council. Urban Mass Transportation Act Amendment of 1970 Authorized grants to states and localities for accessible mass transportation. Javits-Wagner-O'Day Act of 1971 Extended purchase authority to workshops for people with severe disabilities in addition to blindness; retained through 1976 preference for workshops for people who are blind. Social Security Amendments of 1972 Extended Medicare coverage to individuals with disabilities; established Supplemental Security Income program for elderly people and for blind persons and other persons with disabilities. Small Business Investment Act Amendments of 1972 Established the "Handicapped Assistance Loan Program" to provide loans to nonprofit sheltered workshops and individuals with disabilities. Rehabilitation Act of 1973 Prohibited disability discrimination in federally assisted programs and activities and federal agencies; required affirmative action programs for people with disabilities by federal agencies and some federal contractors; established the Architectural and Transportation Barriers Compliance Board. Education Amendments of 1974 Required states to establish plans and timetables for providing full educational opportunities for all children with disabilities as condition of receiving federal funds. Headstart, Economic Opportunity, and Community Partnership Act of 1974 Required that at least 10 percent of children enrolled in Headstart be children with disabilities. Housing and Community Development Act of 1974 Established Section 8 housing program for low-income families, including individuals with disabilities and/or their families. Developmentally Disabled Assistance and Bill of Rights Act of 1975 Described congressional findings regarding rights of persons with developmental disabilities; established funding for protection and advocacy systems; added requirement that state plan include deinstitutuionalization plan; required states to develop and annually review rehabilitation plans for all clients. Education for All Handicapped Children Act of 1975 Required states to establish policy assuring free appropriate public education for children with disabilities as condition for receiving Part B funds; established procedural safeguards, procedures for mainstreaming children with disabilities to the maximum extent possible, and procedures for nondiscriminatory testing and evaluation practices. Rehabilitation, Comprehensive Services, and Developmental Disabilities Amendments of 1978 Established National Institute of Handicapped Research; established National Council on the Handicapped; authorized grant program for independent living services; replaced categorical definition of developmental disability with functional definition; established minimum funding level for protection and advocacy services. Civil Rights Commission Act of 1978 Expanded jurisdiction of Civil Rights Commission to disability discrimination. Department of Education Organization Act of 1979 Established Office of Special Education and Rehabilitative Services in new cabinet-level Department of Education. Civil Rights of Institutionalized Persons Act of 1980 Empowered Department of Justice to bring suit against states for allegedly violating rights of institutionalized persons with disabilities. Job Training Partnership Act of 1982 Authorized training and placement services for "economically disadvantaged" individuals, including persons with disabilities. Education of the Handicapped Act Amendments of 1983 Authorized grants for training parents of children with disabilities. Child Abuse Prevention Treatment Act Amendments of 1984 Required states' child protection agencies to develop procedures for responding to reports that newborns with disabling conditions were being denied treatment; established conditions for requiring such treatment. Developmental Disabilities Act of 1984 Shifted emphasis to employment in priority services; required Individual Habilitation Plan for consumers; increased minimum funding for protection and advocacy services. Rehabilitation Act Amendments of 1984 Established Client Assistance Programs as formula grant programs; made National Council on the Handicapped an independent agency. Consolidated Omnibus Budget Reconciliation Act of 1985 Expanded the definition of "habilitation" for Home and Community-Based Waiver recipients with developmental disabilities to cover certain pre-vocational services and supported employment for previously institutionalized individuals; authorized states to cover ventilator-dependent children under the waiver program if they would otherwise require continued inpatient care. Education of the Handicapped Act Amendments of 1986 Authorized a new grant program for states to develop an early intervention system for infants and toddlers with disabilities and their families, and provide greater incentives for states to provide preschool programs for children with disabilities between the ages of three and five. Handicapped Children's Protection Act of 1986 Authorizes courts to award reasonable attorneys fees to parents who prevail in due process proceedings and court actions under Part B of the Education of the Handicapped Act. Employment Opportunities for Disabled Americans Act of 1986 Made the Section 1619(a) and 1619(b) work incentives a permanent feature of the Social Security Act, added provisions to enable individuals to move back and forth among regular SSI, Section 1619(a) and Section 1619(b) eligibility status. Education of the Deaf Act of 1986 Updated statute establishing Gallaudet College and changed name to Gallaudet University; authorized Gallaudet University to operate demonstration elementary and secondary schools for deaf children; established Commission on Education of the Deaf. Rehabilitation Act Amendments of 1986 "Severe disability" definition expanded to include functional (as well as categorical) criteria; defined "employability" for first time; added formula grant program for supported employment; renamed research branch the National Institute on Disability and Rehabilitation Research. Air Carrier Access Act of 1986 Prohibited disability discrimination in provision of air transportation. Protection and Advocacy for Mentally Ill Individuals Act of 1986 Authorized formula grant program for statewide advocacy services for person with mental illness, provided directly by, or under contract with, the protection and advocacy system for persons with developmental disabilities. Developmental Disabilities and Bill of Rights Act Amendments of 1987 Raised minimum allotment levels for basic state grant program and protection and advocacy systems; increased minimum allotment for university-affiliated programs, basic state grant program, and protection and advocacy systems. Technology-Related Assistance for Individuals with Disabilities Act of 1988 Provided grants to states to develop statewide assistive technology programs. Fair Housing Act Amendments of 1988 Added persons with disabilities as a group protected from discrimination in housing and ensures that persons with disabilities are allowed to adapt their dwelling place to meet their needs. Omnibus Reconciliation Act of 1989 Included major expansion in required services under Medicaid's Early and Periodic Screening, Diagnosis and Treatment Program (EPSDT). Television Decoder Circuitry Act of 1990 Required new television sets to have capability for close-captioned television transmission. Americans with Disabilities Act of 1990 Prohibited disability discrimination in employment, public services and public accommodations operated by private entities; requires that telecommunication services be made accessible. Rehabilitation Act Amendments of 1992 Changed eligibility requirements and procedures for determining eligibility; strengthened requirements for interagency cooperation; strengthened consumer involvement requirements. Family and Medical Leave Act of 1993 Allowed workers to take up to 12 weeks of unpaid leave to care for newborn and adopted children and family members with serious health conditions or to recover from serious health conditions. National Voter Registration Act of 1993 Required states to liberalize their voter registration rules to allow people to register to vote by mail, when they apply for driver's licenses or at offices that provide public assistance and programs for individuals with disabilities such as vocational rehabilitation programs. Goals 2000: Educate America Act of 1994 Provided framework for meeting national educational goals and carrying out systemic school reform for all children with disabilities. Telecommunications Act of 1996 Required telecommunications manufacturers and service providers to ensure that equipment is designed, developed and fabricated to be accessible to and usable by individuals with disabilities, if readily achievable. Health Insurance Portability and Accountability Act of 1996 Improved access to health care for some Americans by guaranteeing that private health insurance is available, portable and renewable; limiting pre-existing condition exclusions and increasing the purchasing clout of individuals and small employers through incentives to form private, voluntary coalitions to negotiate with providers and health plans. Mental Health Parity Act of 1996 Included a provision that prohibits insurance companies from having lower lifetime caps for treatment of mental illness compared with treatment of other medical conditions. Personal Responsibility and Work Opportunity Reconciliation Act of 1996 Required work in exchange for time-limited assistance; Temporary Assistance to Needy Families (TANF) replaced the former welfare programs, ending the federal entitlement to assistance; states, territories, and tribes receive a block grant allocation with a requirement on states to maintain a historical level of state spending known as maintenance of effort. Balanced Budget Act of 1997 Section 4733 provided a new Medicaid buy-in option for people with disabilities. This provision gives states the option to allow individuals with disabilities who return to work the ability to purchase Medicaid coverage as their earnings increase up to 250% poverty, based on an individual's net rather than gross income. Individuals with Disabilities Education Act of 1997 (IDEA) Reauthorization Formally called P.L. 94-142 or the Education of All Handicapped Children Act of 1975, IDEA required public schools to make available to all eligible children with disabilities a free appropriate public education in the least restrictive environment appropriate to their individual needs. Workforce Investment Act of 1998 Required consolidation of several federal education, training, and employment programs; reauthorized Rehabilitation Act programs through fiscal year 2003 and linked those programs to state and local workforce development systems. *Adapted from Kay F. Schriner and Andrew 1. Batavia, "Disability Law and Social Policy," Encyclopedia of Disability and Rehabilitation, NewYork: Simon & Schuster Macmillan, 1995, with summaries of legislation enacted since 1995 contributed by Carri George, Rebecca Ogle, Bobby Silverstein, and the Department of Justice's 1997 publication, A Guide to Disability Rights Laws. This chart includes laws and amendments to laws significant to the context of this report and is not intended to be exhaustive or all inclusive. Advocacy Resources Excellent Internet Web Sites on Advocacy A Selected & Not Exhaustive Bibliography on Disability & Oppression A Selected Bibliography on Attitudes Books and Videos About Self Advocacy Developing Consumer Leadership: An Annotated Bibliography EXCELLENT INTERNET WEB SITES ON ADVOCACY WEBSITES THAT DEAL WITH SELF ADVOCACY CONSUMER ADVOCACY llusa Advocacy Links Has General Advocacy:, Self-Advocacy, International Advocacy, And A List Of Advocacy Groups Who Are Not Online: www.ilusa.com/links/advo.htm Center On Human Policy Has Extensive Resources And Reports On Community Integration That Are Intertwined With Self-Advocacy: http://soeweb.syr.edu/thechp/ The Independent Living Research Utilization (ILRU) IL Network Has The ILRU/Dimenet Independent Living Library Which Has A Great Selection Of Independent Living Information Including Self And Systems Advocacy: www.ilru.org WEBSITES THAT INTERRELATE WITH SELF ADVOCACY CONSUMER LEADERSHIP People Who Information Center: http://www.rainier-web.com/html/pwic.html The Madness Group: http://www.peoplewho.org/Madness http://www.peoplewho.org/Meetings/NMHABeers.htm WEBSITES CONCERNING ATTITUDES TOWARD PEOPLE WITH DISABILITILES ATTITUDINAL BARRIERS Attitudinal Barriers Toward People (Including People Of Color) With Disabilities: http://soeweb.syr.edu/thechp/multatt.htm Cultural Diversity: The Challenge Of Service Delivery: http://www.dinf.ch/pres_com/pres-dd/perez.htm WEBSITES THAT HAVE ADVOCACY TRAINING MATERIALS CATALOGS Research And Training Center On Independent Living, University Of Kansas: www.lsi.ukans.edu/rtcil/rtcbroc.htm 1998 Disability Resources Catalog: http://www.pdassoc.com A Selected & Not Exhaustive Bibliography on Disability & Oppression Abberly, P. "The Concept of Oppression and the Development of a Social Theory of Disability." Disability, Handicapand Society, 1987, 2 (I):5-19. Bartky, Sandra Lee. Femininity and Domination: Studies in the Phenomenology of Oppression. New York: Routledge, 1990. Brown, Steven E. "Creating a Disability Mythology." International Journal of Rehabilitation Research, 1992,15:227-233. Carillo, A.C., K. Corbett, and V. Lewis. No More Stares. Berkeley: Disability Rights Education and Defense Fund, 1982. Charlton, James. "Development and Disability: Voices from the Periphery." In Traditional and Changing Views of Disability in Developing Societies. 1982, 41-70.Monograph 53. Durban: University of New Hampshire, International Exchange of Experts and Information in Rehabilitation. Charlton, James. "Religion and Disability." Disability Rag (Spring): 1994, 17-25 Charlton, James. "The Disability Rights Movement and the Left." Monthly Review 1994, 3 (46):77-85. Driedger, Diane. The Last Civil Rights Movement: Disabled Peoples' International. 1989, New York: St. Martin's Press. Fine, Michelle, and Adrienne Asch, eds. Women with Disabilities :Essays in Psychology, Culture and Politics. 1988, Philadelphia: Temple University Press. Freire, Paulo. Education for Critical Consciousness. 1987,New York: Continuum. Hahn, Harlan. "The Politics of Physical Difference: Disability and Discrimination." Journal of SocialIssues, 1988, 44:39-47 Helander, Bernhard. "Disability as Incurable Illness: Health, Progress, and Personhood in Southern Somalia." In Disability and Culture, ed. Benedicte Ingstad and SusanReynolds Whyte, 1995, 73-93. Berkeley: University of California Press. Hershey, Laura. "False Advertising: Let's Stop Pity Campaigns for People with Disabilities." Ms, 1995, (March/April):96. Hurst, Rachel. "Choice and Empowerment: Lessons from Europe." Disability & Society 1995, 10 (4):529-534. ICD. "Bringing Disabled Americans into the Mainstream." ICD Survey of Disabled Americans. 1986, Conducted by Louis Harris and Associates for the International Center for the Disabled. Longmore, Paul K. "Screening Stereotypes: Images of Disabled People in Television and Motion Pictures." In Images of the Disabled, Disabling Images, ed. A. Gartnerand T. Joe, 1987, 65-78. New York: Praeger. Lorde, Audre. Sister Outsider. 1984, Trumansburg, N.Y. :Crossing Press. Miller, Constance, & K. Campbell. From the Ashes A Head Injury Self-Advocacy Guide. 1987, Seattle: Phoenix Project. NCD. "Public Attitudes Toward People with Disabilities." 1991, Report. Louis Harris and Associates. Oliver, Michael. The Politics of Disablement. 1990, New York: St. Martin's Press. Oliver , Michael, and Gerry Zarb. "The Politics of Disability :A New Approach." Disability, Handicap, & Society 1989, 4 (3):219-240. Shapiro, Joseph P. No Pity: People with Disabilities Forginga New Civil Rights Movement. 1993, New York: Times Books. Shaw, Barrett, ed. The Ragged Edge: The Disability Experience from the Pages of the First Fifteen Years of the Disability Rag. 1994, Louisville: Avocado Press. Zola, Irving. "Toward Independent Living, Living: Goalsand Dilemmas." In Independent Living for Physically Disabled People, 1983, 344-356.& Zola, Irving. "The Politicization of the Self-Help Movement." Social Policy 1987, 18 (Fall):32-33. A SELECTED BIBLIOGRAPHY ON ATTITUDES Web Site: http://soeweb.syr.edu/thechp/multatt.htm TITLE: The Disabled Minority AUTHOR: Biklen, D., & Knoll, J. PUBLICATION INFORMATION: 1987 In S. J. Taylor, D. Biklen, & J. Knoll (Eds.), Community integration for people with severe disabilities (pp. 3-24). New York: Teachers College Press. Teachers College Press 1234 Amsterdam Avenue New York, NY 10027 This article discusses the minority status of people with disabilities and presents the view that change toward community integration will occur more rapidly if we recognize people with disabilities as a minority who face discrimination. The article also challenges us to the fact that the greatest barriers for people with disabilities are not technical but rather attitudinal. TITLE: Handicapism AUTHOR: Bogdan, R., & Biklen, D. PUBLICATION INFORMATION: 1977 Social Policy, 7, 14-19. This article introduces the concept of handicapism and draws parallels to it and racism and sexism. The authors examine how handicapism manifests itself in personal interaction, in organizations and on an institutional level. It also discusses it's presence in human service policy and practice. This is a very important article in understanding the relationship of handicapism to the other isms that exist in our society. TITLE: Socio-cultural aspects of disability: A three-area survey of disabled American Indians AUTHOR: Hodge, F., & Edmonds, R. PUBLICATION INFORMATION: 1988 Native American Research and Training Center University of Arizona 1642 East Helen Tucson, AZ 85719 (602) 621-5075 Research findings are presented in this monograph that provide comprehensive data on health and disability issues of American Indians with disabilities. The study also includes input from Indian personnel at vocational programs that exist as well as by Indians who are disabled. The monograph also looks at the socio- cultural aspects of Indians with disabilities which can be useful in the planning and development of services by Indian communities as well as state and local governments. The difficulties and barriers faced by Indians with disabilities are also discussed as they relate to Navajo, Shoshone-Bannock and Chippewa-Cree tribes. TITLE: Disabled American Indians: An overview of the etiology of disability in the Alaska, Montana, and Navajo areas AUTHOR: Hodge, F., & Weinmann, S. PUBLICATION INFORMATION: 1987 Native American Research and Training Center University of Arizona 1642 East Helen Tucson, AZ 85719 (602) 621-5075 Focusing on three regional groups of American Indians, Navajo, Montana and Alaska, this monograph outlines and discusses various disabling conditions among each group as well as health conditions that are likely to result in disabilities. The various regions represent unique environmental, climatic and tribal differences. Such information has been pieced together thus far so this comprehensive effort is very welcomed. TITLE: American Indian cultural perspectives on disability AUTHOR: Joe, J. R., & Miller, D. PUBLICATION INFORMATION: 1987 Native American Research and Training Center University of Arizona 1642 East Helen Tucson, AZ 85719 (602) 621-5075 This monograph offers insight into the cultural dimension of disability specifically related to the American Indians. It looks as some common perceptions of disability and discusses the Indian and non-Indian traditions and approaches regarding attitudes toward disability, examining differences and broader cultural values. It also offers specific examples of where cultural differences and misunderstandings have arisen when the Indian becomes a client in the non-Indian service world as well as recommendations to providing better understanding and services. Also discussed is the bi-cultural nature of Indian culture today and a brief historical insight as to how this occurred. TITLE: American Indian beliefs concerning health and unwellness AUTHOR: Locust, C. S. PUBLICATION INFORMATION: 1985 Native American Research and Training Center University of Arizona 1642 East Helen Tucson, AZ 85719 (602) 621-5075 This monograph explores a number of common beliefs that many American Indians have in common. It offers a brief explanation and examples of how and why those beliefs are expressed and some actions caused by such beliefs within the service system. The monograph reviews literature in this area as well as offering insights for American Indian people. It helps to widen our understanding and provides insight as to how many people in the American Indian culture think about health and how that impacts on attitudes and treatment of community members that are disabled. TITLE: Apache beliefs about unwellness and handicaps AUTHOR: Locust, C. PUBLICATION INFORMATION: 1986 Native American Research and Training Center University of Arizona 1642 East Helen Tucson, AZ 85719 (602) 621-5075 This monograph offers an overview of Apache life addressing issues of the change from traditional ways to ways of Western medicine in treating physical symptoms. It also discusses the concern within the community that the "old way" is being lost as younger people become more acculturated into the white culture. These concerns face many cultures in this country today as well as to impact on the identities that people of various cultures must struggle with. It offers a review of some of the literature that has been written about the Apache culture and religion, questioning some of what was written. In addition, the monograph discusses the Apache concept of power, who can have power, causes of unwellness and handicaps, and what in fact is viewed as a handicap. In addition, it points out conditions that would not be viewed as handicapping conditions in mainstream culture but are in Apache culture. Other issues such as fetal alcohol syndrome, abortion and infanticide are also discussed. It is an excellent overview of the Apache culture and beliefs. TITLE: Hopi beliefs about unwellness and handicaps AUTHOR: Locust, C. PUBLICATION INFORMATION: 1987 Native American Research and Training Center University of Arizona 1642 East Helen Tucson, AZ 85719 (602) 621-5075 This monograph looks at fundamental Hopi beliefs about unwellness and handicaps, what it means to be a Hopi, and what is said to walk the Hopi way. The Hopi identification of two categories of unwellness, things brought on by unnatural causes and those things brought by natural causes and how this impacts on the way they see disability. It also discusses how the Hopi belief that man is made up of three components, body, mind and spirit, and health is achieved when there is harmony between the three. It adds further insight and more specific understanding to attitudes of this specific group of American Indians and how they think about unwellness and disability within the tradition that has lasted within their culture. TITLE: Perspectives on disability AUTHOR: Nagler, M. PUBLICATION INFORMATION: 1990 Health Markets Research 851 Moana Court Palo Alto, CA 94306 This edited book presents a collection of articles related to disability. Of particular significance are sections on what it means to be disabiled and societal attitudes about disability. Articles discussing such things as the media, the politics of difference, the sociology of acceptance, as well as disabiltiy as a social movement provide for useful information related to issues of disability and multiculturalism. DEMOGRAPHICS TITLE: Disability prevalence and demographic association among race/ethnic minority populations in the United States: Implications for the 21st century AUTHOR: Asbury, C. A., Walker, S., Maholmes, V., Rackley, R., & Sterling, W. PUBLICATION INFORMATION: Research and Training Center for Access to Rehabilitation and Economic Opportunity Howard University 2900 Van Ness Street, N.W. Holy Cross Building, Suite 100 Washington, DC 20008 (202) 806-8727 This monograph deals with the demographics of increased diagnosis of disability among people whom they call ethnic minorities (African Americans, Hispanic Americans, Native Americans and Asian Americans). It discusses a review of the literature and a study that was conducted to determine the prevalence of disability as associated with race/ethnicity. The study attempted to discover who and where these individuals are and what disabilities they have so as to examine demographic characteristics of these individuals. In defining disability the study refers mainly to people with chronic health conditions, physical, sensory and language impairments, mental disorders and nervous disorders. TITLE: Demographics and cultural diversity in the 1990s: Implications for services to young children with special needs AUTHOR: Edmunds, P., Martinson, S. A., & Goldberg, P. F. PUBLICATION INFORMATION: 1990 PACER Center 4826 Chicago Ave. South Minneapolis, MN 55417 (612) 827-2966 This 10-page booklet offers a current look at the changing demographics across this country of children of color who are at risk for disabilities. It begins with a look at why we need to talk about multiculturalism and goes on to discuss the impact of poverty on people of color relating specifically to pre-school age children. The booklet provides brief interviews with several people working in the field who are attempting to make their systems more responsive to multiculturalism. It also provides further resources on the areas discussed. Books and Videos About Self Advocacy (Adapted from a resource list by Community Interface Services) The A-B-C's of Parliamentary Procedure (1974). Channing L. Bete Co., Inc., South Deerfield, MA. A New Way of Thinking (1987) by Minnesota Governor's Planning Council on Developmental Disabilities. Minnesota Governor's Planning Council on Developmental Disabilities, State Planning Agency, 300 Centennial Building, 658 Cedar Street, St. Paul, MN 55115, phone (612) 2964018. Assertiveness Program Curriculum (1983) by Laura Crawford and Mary Hart--Furman. People First of Washington, PO Box 381, Tacoma, WA 98401, phone (206) 272-2811. Building Self-Esteem -A Guide for Parents and Professionals Working with Persons with Developmental Disabilities by Roger A Frank and Jean P. Edwards. PRO-ED, 8700 Shoal Creek Bl., Austin, TX 78758-9965, (512)451-3246 (cost $18.00). Challenges: A Young Man's Journal for Self-Awareness and Personal Planning by Brigham Edmonson. ETR Associates, P.O. Box 1830, Santa Cruz, CA 95061-1830, 1-800-321-4407 (cost $16.95). Charting a Bold Course: A Self-Advocacy Curriculum (1988) by K. DeMerit, P. Halter, G. Jauron, L. Jirovetz and M. Kreuger. Brown County Citizen Advocacy Program 1673 Dousman Street, Green Bay, WI 54307-2770 (cost $14.20). Choices: A Teen Woman's Journal for Self-Awareness and Personal Planning by Mary Bingham, Judy Edmonton, and Sandy Styler. ETR Associates, P.O. Box 1830, Santa Cruz, CA 95061-1830, 1-800-321-4407 (cost $16.95). Choices -Why it is Important for People to have Choice and Power by People First of Washington. Obtained from People First of Washington, PO Box 3 8 1, Tacoma, WA 9840 1, phone (206) 272-2811. Circles of Friends (1988) by Robert and Martha Perske. The Roeher Institute, 91 Granton Drive, Richmond Hill, Ontario L4B 2N5 Canada (cost $12.95). Communicating Emotions by Kathleen Middleton. ETR Associates, P.O. Box 1830, Santa Cruz, CA 95061-1830, 1-800-321-4407 (cost $19.95 for Manual, $2.95 for workbook). Connecting Health, Communication and Self-Esteem by Susan J. Laing and Clint E Bruess. ETR Associates, P.O. Box 1830, Santa Cruz, CA 95061-1830, 1-800-321-4407 (cost $19.95 for Manual, $2.95 for workbook). Developing Skiffs by Gilda Gussin and Ann Buxbaurn. ETR Associates, P.O. Box 1830, Santa Cruz, CA 95061-1830, 1-800-321-4407 (cost $12.95 for Manual, $19.95 for teacher's guide). Effective Self-Advocacy (Report #90-4). University of Michigan, Community Integration, 109 Pattee Hall, 150 Pillsbury Dr SE, Minneapolis, MN 55455 (cost $3.00). Four Conditions of Self-Esteem by Reynold Bean. ETR Associates, P.O. Box 1830, Santa Cruz, CA 95061-1830, 1-800-321-4407 (cost $24.95). History and Goals of People First of Washington (1986) by People First of Washington. People First of Washington, PO Box 381, Tacoma, WA 98401, phone (206) 272-2811. How We Lived and Grew Together (1986) Interstate Seminar on Self- Advocacy for Persons with Developmental Disabilities. InterServ, 3 9 East 5 1 st Street, New York, NY 10022. How We Shared Life Experiences (1987). The Second Inter-State Seminar on Self-Advocacy. InterServ, 866 U.N. Plaza #4 10, New York, NY 100 17. It's Never Too Early, It's Never Too Late - A Booklet About Personal Futures Planning (1989) by Beth Mount and Kay Zwernik. Minnesota Governor's Planning Council on Developmental Disabilities, 300 Centennial Office Building, 658 Cedar Street, St. Paul, N4N 55155, phone (612) 2964018. Making a Contract With Your Advisor (1987) by People First of Washington. People First of Washington, PO Box 381, Tacoma, WA 98401, phone (206) 272-2811. Making and Keeping Friends by Imogene Fox. ETR Associates, P.O. Box 1830, Santa Cruz, CA 95061-1830, 1-800-321-4407 (cost $19.95 for Manual, $2.95 for workbook). Making Friends: Developing Relationships between People with Disabilities and Other Members of the Community (1990). The Roeher Institute, 91 Granton Drive, Richmond Hill, Ontario L4B 2N5 Canada (cost $16.00). Newsletters ... Why & How (1984) by People First of Washington. People First of Washington, PO Box 3 8 1, Tacoma, WA 9840 1, phone (206) 272- 2811. "Normalization and the Consumer," from Advancing Your Citizenship - Normalization Re-examined [ed. Gilbert Foss] (1982) by Sharyn Kaplan, Dennis Heath, and Valerie Schaaf. University of Oregon Press, Eugene, OR 97403. Officer Handbook (1978) by People First of Washington. People First of Washington, PO Box 3 8 1, Tacoma, WA 98401, phone (206) 272-2811. Our Voice is New: All About Self-Advocacy (slides, script and tape cassette) (1986) by Cynthia Sutton. Center on Human Policy, Syracuse University, PO Box 127, 724 Comstock Avenue, Syracuse, NY 13244- 4230, phone (315) 423-3851. People First Handbook [Blue Book] (1983) by People First of Washington. People First of Washington, PO Box 381, Tacoma, WA 98401, phone (206) 272-2811. People First Language (1992) by Jean Ann Tulloch. Community Interface Services, 2621 Roosevelt Street, Suite 102, Carlsbad, CA 92008, phone (619) 729-3866. People First of Kansas City Evaluation Activities and Self-Advocacy Information (1988) by B. Eddy (ed.). University of Kansas, Institute for Human Development-UAP, 2220 Holmes, Kansas City, MO 64106-2676 (cost $3,00). People With Developmental Disabilities Speak Out on Quality of Life (1990) by Valerie Vivona and Deborah Kaplan. World Institute on Disability, 5 10 -16th Street, Oakland, CA 94612, phone (5 10) 763-4100. Planning Life Directions by Susan J. Hart. ETR Associates, P.O. Box 1830, Santa Cruz, CA 95061-1830, 1-800-321-4407 (cost $19.95 for Manual, $2.95 for workbook). Read My Lips -It's My Choice (1989) by William T. Allen, Ph.D. Minnesota Governor's Planning Council on Developmental Disabilities, 300 Centennial Office Building, 658 Cedar Street, St. Paul, MN 55155, phone (612) 296-4018. Self-Advocacy -A Guide to Teaching Persons with Severe Disabilities About Their Basic Rights and Responsibilities as Members of Their Communities (199 1) by Glen Maxion and Bob Morris. San Diego City Schools, Publication #I-D-9 1. 1, U.S. Department of Education, Office of Special Education and Rehabilitation Services, 4 100 Normal Street, San Diego, CA 92103, phone (619) 299-1901. Self-Advocacy by Persons With Disabilities - Ideas for Creating a National Organization (199 1) by University of Minnesota. University of Minnesota, Research & Training Center on Community Living, National Steering Committee of Self-Advocates, 150 Pillsbury Drive SE, Minneapolis, MN 55455, phone (612) 624-4512. Self-Advocacy Curriculum for High School Students Who've Been Labeled Learning Disabled and Educable Mentally Retarded (1987) by Jaqueline Osborne, et al. Kansas University United Facility (KUAF), 3111 Haworth, Lawrence, KS 66045, phone (913) 8644950. Self-Advocacy Is... by People First of Washington. People First of Washington, PO Box 3 8 1, Tacoma, WA 98401, phone (206) 272-2811. Self-Advocacy: Learning About Rights and Responsibilities (1992) by Michelle Wischkaemper. Community Interface Services, 2621 Roosevelt Street, Suite 102, Carlsbad, CA 92008, phone (619) 729-3866. S elf-Advocacy: Resource and Training Manual (1992) by Jean Ann Tulloch and Stacy Onks. Community Interface Services, 2621 Roosevelt Street, Suite 102, Carlsbad, CA 92008, phone (619) 729-3866. (The) Self-Advocacy Workbook (198 1) by Nancy E. S. Gardner. Kansas University United Facility (KUAF), 3111 Haworth, Lawrence, KS 66045, phone (913) 864-4950. Self-Esteem ABCs ETR Associates, P.O. Box 1830, Santa Cruz, CA 95061-1830, 1-800-321-4407 (cost 50 for $15.00). Self-Esteem in the Classroom by the Regional Opportunities Program. Regional Opportunities Program, 4 100 Normal Street, San Diego, CA 92103, phone 293 -852 1. Serving on a Board of Directors by People First of Washington. People First of Washington, PO Box 3 8 1, Tacoma, WA 9840 1, phone (206) 272- 2811. Setting Goals for People First Local Chapters (1986) by People First of Washington. People First of Washington, PO Box 3 8 1, Tacoma, WA 9840 1, phone (206) 272-2811. Speaking Up and Speaking Out: An International Self-Advocacy Movement (1985). People First of Washington, PO Box 3 8 1, Tacoma, WA 9840 1, phone (206) 272-2811. Speaking Up and Speaking Out to Make Services Better (1984) by John O'Brien and Connie Lyle. Georgia Advocacy Office, 1447 Peachtree St. NE, Suite 811, Atlanta, 20309. Starting a People First Chapter by People First of Washington. People First of Washington, PO Box 3 8 1, Tacoma, WA 98401, phone (206) 272-2811. Successful Meetings by People First of Washington. People First of Washington, PO Box 3 8 1, Tacoma, WA 98401, phone (206) 272-2811. "10 Ways to Support a People First Group" from Self-Advocacy Is... by People First of Washington. People First of Washington, PO Box 3 8 1, Tacoma, WA 9840 1, phone (206) 272-2811. Twenty-Nine Recommendations From the Conference Participants (1989) by University of Minnesota. University of Minnesota, Institute on Community Integration, 150 Pillsbury Drive S.E., Minneapolis, MN 55455, phone (612) 624-4512. Unlocking Doors to Self-Esteem by C. Lynn Fox and Francine Lavin Weaver. ETR Associates,* P.O. Box 1830, Santa Cruz, CA 95061-1830, 1- 800-321-4407 (cost $16.95). We Are People First -Facts about Persons with Developmental Disabilities, author unknown. United Cerebral Palsy Association, 3821 Calle Fortunada, Suite C, San Diego, CA 92123, phone (619) 278-5420. We Can Speak For Ourselves (1984) by Paul Williams and Bonnie Shoultz. Brookline Books, PO Box 1046, Cambridge, MA 02238-1046. Why We Need People First and Self-Advocacy (1985) by Bob Furman. People First of Washington, PO Box 381, Tacoma, WA 98401, phone (206) 272-2811. Worker's Handbook: Workers Have a Right to Know (1985) by People First of Washington. People First of Washington, PO Box 381, Tacoma, WA 98401, phone (206) 272-2811. Advice for Advisors: People First (1988) by Bill Worrell. National People First, Kinsmen Building, York University, 4700 Keele Street, Downsview, Ontario M3J IP3, Canada (cost $12.00). Consumer Roles in Society (1989) by B. Eddy & G. Cohen. University of Kansas, Institute for Human Development-UAP, 2220 Holmes, Kansas City, MO 64106-2676 (cost $4.00). How to be an Effective Board Member: Manual for Facilitators (1989) by B. Eddy, G. Cohen, C. Rinck & P. Griggs. University of Kansas, Institute for Human Development-UAP, 2220 Holmes, Kansas City, MO 641062676 (cost $5.00). Role of An Advisor in Self-Advocacy Groups (1985) by People First of Washington. People First of Washington, PO Box 3 8 1, Tacoma, WA 9840 1, phone (206) 272-2811. Working with Parents: A Practical Guide for Teachers and Therapists by Roy McOnkey. Brookline Books, P.O. Box 1046, Cambridge, MA 92238 (Cost $21.95). Articles of Incorporation (1990) by People First of Washington. People First of Washington, P.O. Box 381, Tacoma, WA 98401, telephone (206) 272-2811. Learning About Voting and How Government Works: A Voter Education Handbook by People First of Washington. People First of Washington, PO Box 381, Tacoma, WA 98401, phone (206) 272-2811. Tax-Exempt Status for Your Organization [Publication No. 557] (1992) by Internal Revenue Service. Internal Revenue Service, EP/EO Division, McCaslin Industrial Park, 2 Cupania Circle, Monterey Park, CA 91754- 7406. Your Rights and Responsibilities by San Diego and Imperial Counties Self- Advocacy Committee. San Diego Regional Center for Developmental Disabilities, 4355 Ruffin Road, San Diego, CA 92123, phone (619) 576- 2980. Building Self-Advocacy in the Community: A Model Workshop to Begin a Self--Advocacy Group (1989), author unknown. Association for Retarded Citizens of the United States (ARC), National Headquarters, Self-Advocacy Committee, PO Box 6109, Arlington, TX 76005, phone (817) 261-6003. Citizens in Our Communities (1990) by People First of Washington. People First of Washington, PO Box 381, Tacoma, WA 98401, phone (206) 272-2811. (The) Heart of Community is Inclusion... (1990) by Minnesota Governor's Planning Council on Developmental Disabilities. Minnesota Governor's Planning Council on Developmental Disabilities, State Planning Agency, 300 Centennial Building, 658 Cedar Street, St. Paul, MN 55155. phone (612) 296-4018. How to be an Effective Board Member (1989) by B. Eddy, G. Cohen & C. Rinck. University of Kansas, Institute for Human Development-UAP, 2220 Holmes, Kansas City, MO 64106-2676 (cost $10. 00). Individual Program Plan (T-PP) Meeting Work Sheet (199 1), Albany, NY: New York State Self-Advocacy Conference. Leadership Training Manual: People First (1987) by Bill Worrell. National People First, Kinsmen Building, York University, 4700 Keele Street, Downsview, Ontario M3J IP3, Canada (cost $12.00). Participation in Your Individualized Service Plan (ISP) (1985) by People First of Washington. People First of Washington, PO Box 381, Tacoma, WA 98401, phone (206) 272-2811. Peer Tutoring Handbook: Promoting Co-operative Learning by Keith J. Topping. Brookline Books, P.O. Box 1046, Cambridge, MA 92238 (Cost $18.95). People First Self-Advocacy Manual (1986) by B. Eddy, G, Cohen. University of Kansas, Institute for Human Development-UAP, 2220 Holmes, Kansas City, MO 64106-2676 (cost $7.00). Reaching for Independence: A Self-Advocacy Curriculum (1986) by Pamela L Halter. Brown County Citizen Advocacy Program 1673 Dousman Street, Green Bay, WI 54307-2770 (cost $8.75). What We Want From Residential Programs (1985) by People First of Washington. People First of Washington, PO Box 3 8 1, Tacoma, WA 9840 1, phone (206) 272-2811. ACT Resource Library (1992), St. Paul, MN. Advocating Change Together (ACT), 1821 University, Suite S-363, St. Paul, MN 55104. National Self-Advocacy Resources (1992). Self-Advocacy Grant Project, Community Interface Services, 2621 Roosevelt Street, Suite 102, Carlsbad, CA 92008, (619) 729-3866. National Toll-Free Numbers for Persons with Developmental Disabilities by National Information Center for Children and Youth with Disabilities. National Information Center for Children and Youth With Disabilities, P.O. Box 1492, Washington, D.C. 20013-1492, phone 1-800-999-5599. People First of Washington Resources and Bibliography (199 1), Tacoma, WA. People First of Washington, P.O. Box 381, Tacoma, WA 98401, telephone (206) 272-2811. Publications Catalog (1990), University of Kansas. University of Kansas, Beach Center on Families with Disabilities, Bureau of Child Research, 4138 Haworth Hall, Lawrence, KS 60045, phone (913) 864-7600. "Resources on Self-Help and Self-Advocacy," from Speaking Up and Speaking Out: An International Self-Advocacy Movement (1985), Tacoma, WA. People First of Washington, P.O. Box 381, Tacoma, WA 98401, telephone (206) 272- 2811. Self-Advocacy Bibliography (1991), ARC. ARC National Headquarters, P.O. Box 1047, Arlington, TX 76004, telephone (817) 261-6003. Self-Advocacy Bibliography (1987), Center on Human Policy. Human Policy Press, Syracuse University, P.O. Box 127, University Station, Syracuse, NY 13210, phone (315) 423-3851. Self-Advocacy Programs Directory (1990), by Association for Retarded Citizens. Association for Retarded Citizens (ARC) of the U.S., National Headquarters, P.O. Box 6109, Arlington, TX 65005, phone (817) 261-6003. 1991-92 Catalogue (199 1) by the Roeher Institute. G. Allen Roeher Institute, Kinsmen Building, York University, 4700 Keele Street, Downsview, York, Ontario M3J 1PE, Canada, phone (416) 661-9611. Advocates' Voice. Arlington, TX Association for Retarded Citizens (ARC) of the United States. Available from ARC, P.O. Box 6109, Arlington, TX 76010, phone (817 261-6003. People First Newsletter. Tacoma, WA: People First of Washington. People First of Washington, P.O. Box 381, Tacoma, WA 98401, phone (206) 272- 2811. A New Way of Thinking (1987), 23 minutes, Minnesota Governor's Planning Council on Developmental Disabilities. University of Michigan, Community Integration, 109 Pattee Hall, 150 Pillsbury Dr SE, Minneapolis, NIN 55455 (cost $35.00). Our Voices Count Self-Advocacy Now, 25 minutes, Self-Advocacy of New York. Self-Advocacy Association of New York State, Inc., 75 Morton Street, 13E, New York, NY 10014, (cost $10.00). People First Leadership Training Cassettes National People First, Kinsmen Building, York University, 4700 Keele Street, Downsview, Ontario MH IP3, Canada (cost $12.00). Self-Advocacy for People with Developmental Disabilities-A Trainer's Manual [A five-part video series with manual] by Phillip Browning, Ph.D. and Cindy M. Rhoades. James Stanfield & Co., Inc., PO Box 41058-S, Santa Barbara, CA 93140, phone 1-800-421-6534 (cost $149.00). Self-Advocacy: Learning About Rights and Responsibilities (1992) by Michelle Wischkaemper. Community Interface Services, 2621 Roosevelt Street, Suite 102, Carlsbad, CA 92008, phone (619) 729-3866. Speaking for Ourselves, 17 Minutes. National People First Project of Canada (1988). National People First, Kinsmen Building, York University, 4700 Keele Street, Downsview, Ontario M3J 1P3, Canada (cost $23.00). We Can Do It. National People First Project of Canada (1987). Landmark Films, 3450 Slade Run Dr., Falls Church, VA 22042 (cost $160.00). SELF-ADVOCACY BIBLIOGRAPHY Materials available from The Arc National Headquarters, P.O. Box 104 7, Arlington, Texas 76004, (817)261-6003,(817)277-0553 TDD. (Prices include shipping and handling.) Advocates' Voice. A newsletter on self-advocacy. No charge for self-advocacy groups. A Call to Action: 7he Roles of People with Mental Retardation in Leadership. (1992). A handbook outlining the proceeding from the leadership forum held during The Arc's 1991 national convention. Discusses barriers and strategies to supporting leadership of people with mental retardation. 1-9 copies, $3.50 ea.; 10-29 copies, $2.50 ea., over 29 copies, $1.50 ea. Bill of Rights Series: Three cartoon-style booklets -The First Amendment, The Voting Amendments, Arrest and Trial Amendments; two games - Graphistory, a board game, and Old King George, a card game; a poster; three book marks; and a Teachers 'Guide (1990). These materials were prepared for use in helping to educate high school students with mental retardation about our constitutional system of government. These materials help people learn about their fights and responsibilities as citizens of the U.S. and about the history of our Constitution. $5.00. Self-Advocacy Bibliography. (1997). Books, pamphlets, video cassettes and other materials on self-advocacy from around the United States and Canada. Single copies free by sending self-addressed, stamped envelope. Directory of Self-Advocacy Programs. The Arc's Self-Advocacy Committee (1997). A listing of self-advocacy groups in the United States, Canada and Mexico. Single copies free by sending self-addressed, stamped envelope (Extra postage required). Video: Self-Advocacy: Supporting the Vision. The Arc of the U. S. and The Arc of New Mexico (1992). A video discussing the importance of chapters of The Arc supporting the best practices of self-advocacy and self-determination. Members of The Arc - $18.00; non-members - $23.00. Self-A dvocacy: Supporting the Vision. The Arc of the U. S. and The Arc of New Mexico (1992). An accompanying handbook to the video. Provides additional information and detail on the importance of supporting self-advocacy and steps to organizing a self-advocacy group. 1-9 copies, $3.50 ea.; 10-29 copies, $2.50 ea., over 29 copies, $1.50 ea. Ae Americans with Disabilities Act (ADA) and Working. The Arc of the U. S. and Great Lakes Disability and Business Technical Assistance Center. (1993). This booklet is for people with mental retardation and is written in easy-to-read language to explain basics of Title I (employment) and what to do if discrimination occurs. 1-9 copies, $3.50 ea.; 10-29 copies, $2.50 ea.; over 29 copies, $2.00 ea. Disabilities Act and Working: A Curriculum to Teach Older Self-Advocates About the ADA and Employment. The Arc of the U.S. (1996). This multimedia training guide can be used to teach self-advocates, and especially older self-advocates, about the ADA, discrimination and how to resolve disability and age-related employment problems. $15.00. Learning About the Americans with Disabilities Act and Title II.- Opening Up Government Services & Activities for People with Disabilities. The Arc of the U.S. (1996). This easy-to-read guide is geared toward self-advocates to teach about the Americans with Disabilities Act (ADA) and title II, the ADA's provisions for state and local government. The guide carefully describes title II, how to recognize discrimination and "special rules" that might apply to various government activities and services. Included with the guide is an audio cassette tape that can be used to follow-along while reading. $15.00. Learning About the Americans with Disabilities Act and Title III: Opening Up Places of Public accommodations for People with Disabilities. The Arc of the U.S. (1996). Describes in easy-to-read language, the ADA title III (public accommodations - hotel, restaurants, stores, etc.) including how to recognize and solve issues of discrimination. Included are ideas that self-advocates can give to public accommodators, resources and inserts that can be photocopied and handed out to title III entities. Publication is accompanied by a read-along audio tape. 72 pgs. $15.00. The Setf-Advocacy Movement. Research and Training Center on Community Integration, Center on Human Policy, Syracuse University. A two-page information sheet discussing the self-advocacy movement, the history, why these groups are important, barriers, and what local chapter of The Arc can do to promote self-advocacy. Single copies free by sending self-addressed, stamped envelope. $13.00 per 100. Know Your Rights if You Get Arrested. The Arc of the U.S. (1996). A two-sided reproducible brochure slick of information for self-advocates on what to do when in contact with law enforcement and/or the courts. Single copies free by sending self-addressed, stamped envelope. $13.00 per 100. 10 Steps to Independence: Promoting Setf-Determination in the Home. (1992). An overview of the family's role in promoting attitudes and abilities leading to self-determination. Provides ten ways that the family can play a critical role in teaching their son or daughter to be self-determined. Flier. Single copies free. Send self-addressed, stamped envelope. $13.00 per 100. Voting. (Revised 1992) A student brochure. Answers questions about voting: What is voting? Who can vote? When and how can I vote? Single copies free by sending self-addressed, stamped envelope. $13.00 per 100. Voting: Preparingfor Citizenship - A Guidefor the Teacher and Citizen Advocate. (Revised 1992). Flier on voting. Single copies free by sending self-addressed, stamped envelope. $13.00 per 100. Materials available front G. Allen Roeher Institute, Kinsmen Bldg., 4700 Keele St, Downsview, Ontario, Canada M3J My (416) 661-9611 (All prices quoted in U.S. currency. Add 10 percent of price for mailing to United States. All orders must be prepaid. Some discounts available for ordering quantities.) Justice For Some: A discussion book on law for people with mental handicaps. Harvey Savage (1983). 95 pages. Case studies and answers to legal questions. $8.31. Order #1119. People First: Advicefor Advisors. Bill Worrell (1988). 84 pages. A handbook written for all who act as advisors to self-advocacy groups like People First or who want to act in this capacity. $8.31. Order #5036. People First: Leadership Training Manual. Bill Worrell (1987). 57 pages. For those who want to know what the organization represents and how to start and operate their own group. $8.3 1. Order #5039. This Book is About Rights. British Columbians for Mentally Handicapped People (1988).22 pages. A clearly written and illustrated book for people with mental handicaps telling about basic human rights. $2.91. Order #5037. Materials availablefrom Human Policy Press, P.O. Box 127, Syracuse, N. Y 13210, (315) 443-2761 Ordinary Moments: The Disabled Experience. Alan Brightman (Ed.) (1985). This book contains the reflections of people with disabilities on their lives, experiences and struggle for human rights. $10.95. Our Voice is New: All About Self-Advocacy. Cindy Sutton (1986). A slide show which explains what self-advocacy is, why it is important, what issues are important and what self-advocates do. 114 slides, script and tape cassette. $50.00. Materials available from Kansas University Affiliated Facility, 1052 Dole, University of Kansas, Laivrence, Kan. 66045, (913) 864-4950 A Self-Advocacy Curriculum for High School Students & Self-Advocacy Curriculum Teacher's Manual. Jacqueline Osborne, et al. (1987). Provides basic instruction for secondary students in the principles of self-advocacy. The curriculum is comprised of 15 lesson plans, designed to teach students 1) how to assess their own needs and decide what they want; 2) about their legal fights and responsibilities; and, 3) how to negotiate and communicate effectively. The curriculum includes principles, checklists, suggested role plays, and other activities. $11.50. The Self-Advocacy Workbook. Nancy Gardner (198 1). One of the most comprehensive books ever written about how to form self-advocacy groups. Designed specifically for people with developmental disabilities, it takes you step-by-step through the process of starting your own group. It also provides ideas for what to do during meetings and how to put self-advocacy into practice. $15.00. 7he Advisor's Guide boo for Self-Advocacy. Jeff Woodyard (198 1). A companion book to The Self-Advocacy Workbook, written specifically for the advisors of self-advocacy groups. Provides advisors with practical advice on how and when to best help a self- advocacy group. In addition, it has numerous valuable resources, ranging from names and addresses of self-advocacy groups nation-wide, to sample by-laws. $6.00. ANDI for Consumers. William Allen & Nancy Gardner (198 5). A workbook designed to help people with disabilities evaluate the places they live and work. It is written in simple language and has large print. It is a step-by-step guide to learning how to evaluate programs such as group homes, sheltered workshops, and state institutions. Although it is written specifically for consumers, it is also an excellent means by which staff members can evaluate their own programs. Includes training guide and complete set of worksheets to be used on an actual evaluation. $6.00. Getting on Board. Barbara Gibbons & Jacqueline Osborne (1982). Written especially for consumers with simple words, large type, and illustrations. This booklet explains the basic principles of how to participate on decision-making boards. $5.00. Materials available from People First of Washington, P. 0. Box 381, Tacoma, Wash. 98401, (206) 272-2811 (Indicate the quantity and title of the materials you wish to order. Please make check or money order payable to People First of Washington -no cash please. Postage and handling are included in the prices quoted above. Add 10 percent for postage when ordering outside the United States. If your organization is unable to pay for requested materials, People First of Washington will attempt to provide as many of the materials as possible.) Assertiveness. 12 pages. A curriculum for teaching the difference between non-assertive, assertive and aggressive behavior. Includes graphics for non-readers and skits for practice. $ 1. 00. Evaluating Programs (Seminar). 8 pages. Description/discussion of how programs can help/hurt persons with disabilities. Suggestions for change included. $.50. History & Goals of People First of Washington. 8 pages. A complete history of how and why People First began in Washington. Follows the growth of the organization to include 35 chapters and over 1,000 members. $.50. Officers Handbook. 21 pages. Information on the duties, roles and responsibilities of a good officer. Includes guidelines for setting up an agenda, conducting a meeting, voting on chapter issues and electing officers. $2.00. Participation in Your Individual Service Plan. 18 pages. A complete guide to use when developing your Individualized Service Plan or Individualized Educational Plan. Over 100 illustrations are used for persons who have difficulty reading. $2.00. People First. 48 pages. An encompassing look at People First support groups, meetings, elections, workshops, conventions and core groups. $4.00. People First Newsletter. 8 pages. Published quarterly to keep its readers up-to-date about People First. $5.00 for out-of-state requests. Renting an Apartment. 14 pages. Includes specific information on what to look for when signing a lease, landlord and tenant duties, paying rent, eviction and moving out. $1.00. Role of an Advisor. 20 pages. A chapter from the book, International Self-Advocacy Leadership Conference which gives advisors input that may assist them as they begin to advise a People First chapter. $2.00. Setf-Advocacy is... 1 page. A brief, illustrated description of what People First members feel self-advocacy is all about. Free. Setting Goals. 2 pages. An illustrated approach to help a chapter survey its members to determine what their priority goals will be. Free. Speaking Up & Speaking Out. 89 pages bound. This book is the story of the International Self-Advocacy Leadership Conference that was held in Tacoma, Wash., in July of 1984. We feel that this is a great source of information regarding self-advocacy by citizens with developmental disabilities. $11.50. Starting a People First Chapter. 13 pages. A "grass roots" approach to starting a local chapter in your community and ensuring that its growth continues. $.50. Successful Meetings. 9 pages. A step-by-step description of how to organize a meeting that allows participants to be actively involved. $.50. Voter Education. 14 pages. A four-part curriculum on the rights and responsibilities of voting. Describes each of the federal, state, county and city governments and the officials for which one votes. $1.00. What We Want From Employment Programs. 13 pages. Offers suggestions to employment program providers about what consumers are looking for in their employment program. Illustrated. $1.00. What We Want From Residential Programs. 12 pages. Offers suggestions to care providers about what consumers are looking for in their residential program. Illustrated. $3.00. Worker's Handbook. 12 pages. A helpful guide for employers to use in developing handbooks for their workers. Illustrated. $2.50. Materials availablefrom University of Missouri-Kansas City, 2220 Holmes, Kansas City, Mo. 64108-2676, (816) 276-1770 (All prices include shipping and handling. Send check, money order, or purchase order.) Consumer Roles in Society. B. Eddy & G. Cohen (1989). A manual for training board members and staff on self-advocacy and the importance of involving people with disabilities in decision-making. $4.00. How To Be An Effective Board Member. B. Eddy, G. Cohen & C. Rinck (1989). A manual for self-advocates on how to be a good board member. It includes rules used in meetings, appropriate behaviors and how to prepare for a board meeting. $1.00 from each sale of this book will be donated to People First activities in Missouri. $10.00. How To Be An Effective Board Member: A Manual For Facilitators. B. Eddy, G. Cohen, C. Rinck & P. Griggs (1989). A manual which describes the training and support process of assisting self-advocates on boards. It also contains a list of training information and a list of useful resources. $5.00. Community Advocacy Press. A newsletter on self-advocacy. Contact Capabilities Unlimited Inc., 2495 Efie Ave., Cincinnati, OH 45208. No charge. Freedom of Speech Setf-Advocacy Newsletter. A newsletter on self-advocacy around the country. Contact The Open Door Club, P.O. Box 454, Northampton, Mass. 01061. No charge. Leadership Plus. Michelle Hoffinan. Developed by Tulsa ARC. A Facilitator's Manual and Participant's Manual to teach people with disabilities the important points of being leaders. A complete training course which mixes fun and education. Facilitator's Manual $11.00; Participant's Manual $8.50. I Make a Motion Too. (pamphlet) $ 1. 00. Order from Tulsa ARC, 1400 S. Boston, S-600, Tulsa, Okla. 74119. Shipping and handling included. National Conference on Self-Determination. A booklet of the recommendations and reports from a conference on self-determination held in Arlington, Virginia from January 9-10, 1989. Free copies available from Institute on Community Integration, 6 Pattee Hall, University of Minnesota, 150 Pillsbury Dr. SE, Minneapolis, Minn.55455. Our Voices Coutit - Self-Advocacy Now. A 25-minute videotape on self-advocacy narrated by Geraldo Rivera. $ 10.00. Order from The Self-Advocacy Association of New York State, Inc., 75 Morton St., New York, N.Y. 100 14. Reaching for Independence: A Setf-Advocacy Curriculum. Pamela L. Halter (1986). A curriculum to teach self-advocates a variety of skills to become more independent in the community. $7.50 plus $1.25 shipping and handling. Order from Brown Co. Association for Retarded Citizens, P. 0. Box 12770, Green Bay, Wisc. 54307-2770. Read My Lips: It's My Choice. William T. Allen (1989). A resource guide to help self-advocates get the services they need and want to become more independent. $9.95 plus $2.00 shipping and handling. Order from Minnesota Book Store, 117 University Ave., Ford Bldg. Main Floor, St. Paul, Minn. 55155, (612) 297-3000. Self-Advocacy for Persons With Developmental Disabilities. Philip Browning & Cindy M. Rhoades. Five programs on videotape covering an overview of the self-advocacy movement, starting a group, role of the advisor, officer training and organizing a convention. Package includes videotape and Teacher's Guide. (Free 30-minute video "People First" with purchase.) $149.00 plus 8 percent for shipping and handling. Order from James Stanfield Publishing Company, P.O. Box 41058, Santa Barbara, CA 93140. Toll free 1-800-421-6534. Speakeasy: People With Mental Handicaps Talk Out About 7-heir Lives in Institutions and ill the Community. Karen Melberg Schwier (1990). A collection of stories about people with developmental disabilities speaking about their lives in institutions and the community. $12.00. Contact PRO-ED, 8700 Shoal Creek Blvd., Austin, Texas 78758, (512) 451-3246. Speaking for Ourselves. National People First Project of Canada (1988). A 17-minute videotape featuring Patrick Worth, President of People First of Ontario, speaking on how People First made him a strong self-advocate and on issues of sheltered employment and real employment. $18.28 U.S. currency (includes shipping and handling). Order from National People First Project, Kinsmen Bldg., 4700 Keele St., Downsview, Ont., Canada M3J IP3, (416) 661-9611. Stigma: Stereotypes and Scapegoats. Maureen Crossmaker & David Merry (eds.) (1990). A collection of writings, poems, songs and transcripts from speeches depicting how people with disabilities feel about themselves and society. The book was the result of a conference on stigma. $7.00 (includes shipping and handling). Order from Ohio Legal Rights Service, 8 East Long Street, 5th Floor, Columbus, Ohio 43266-0523, (614) 466-7264. Transition Summary: Self-Determination. A series of articles and stories on self-determination. 1988. Single copies are free by contacting the National Information Center for Children and Youth with Handicaps, P.O. Box 1492, Washington, D.C. 20013. We Can Do It. National People First Project of Canada (1987). A 30-minute award- winning videotape on self-advocacy. $150.00 plus $5.00 shipping & handling. Order from Landmark Films, 3450 Slade Run Dr., Falls Church, Va., 22042. Toll free 1-800-342-4336. Purchase orders or prepaid orders only. We Can Speakfor Ourselves. Paul Williams & Bonnie Shoultz (1984). A book of practical advice to help self-advocates, parents and professionals learn about the rights of people with developmental disabilities. This book was written for and by a group of self-advocates. $17.95 plus $3.00 shipping and handling. Order from Brookline Books, P.O. Box 1046, Cambridge, Mass. 02238, (617) 868-0360. We the People. Arc/Florida . An illustrated book (1988) on the basic rights of self-advocates including government benefits, independent-living and voting and a 15 miinute videotape (1989) providing step-by-step instructions on how to set up a self-advocacy group. Book is $3.00, videotape is $12.00. Order from ARC/Florida, 411 E. College Ave., Tallahassee, Fla. 32301, (904) 681-193 1. Whatever You Decide: A Workbook for Teaching People "o Are Mentally Retarded How to Make Choices and Assert Themselves. Jennifer Moore-Johnson (1983). This book provides a program for teaching decision-making and assertiveness skills to consumers at all levels of comprehension. It introduces several effective approaches for teaching (for example, using role plays). Order from Jennifer Mohr Johnson, 23 8 Hampton Drive, Venice, CA 9029 1. Revised. Contact for price information. June 1997 Books and Videos About Self Advocacy (Adapted from a resource list by Community Interface Services) The A-B-C's of Parliamentary Procedure (1974). Channing L. Bete Co., Inc., South Deerfield, MA. A New Way of Thinking (1987) by Minnesota Governor's Planning Council on Developmental Disabilities. Minnesota Governor's Planning Council on Developmental Disabilities, State Planning Agency, 300 Centennial Building, 658 Cedar Street, St. Paul, MN 55115, phone (612) 2964018. Assertiveness Program Curriculum (1983) by Laura Crawford and Mary Hart--Furman. People First of Washington, PO Box 381, Tacoma, WA 98401, phone (206) 272-2811. Building Self-Esteem -A Guide for Parents and Professionals Working with Persons with Developmental Disabilities by Roger A Frank and Jean P. Edwards. PRO-ED, 8700 Shoal Creek Bl., Austin, TX 78758-9965, (512)451-3246 (cost $18.00). Challenges: A Young Man's Journal for Self-Awareness and Personal Planning by Brigham Edmonson. ETR Associates, P.O. Box 1830, Santa Cruz, CA 95061-1830, 1-800-321-4407 (cost $16.95). Charting a Bold Course: A Self-Advocacy Curriculum (1988) by K. DeMerit, P. Halter, G. Jauron, L. Jirovetz and M. Kreuger. Brown County Citizen Advocacy Program 1673 Dousman Street, Green Bay, WI 54307-2770 (cost $14.20). Choices: A Teen Woman's Journal for Self-Awareness and Personal Planning by Mary Bingham, Judy Edmonton, and Sandy Styler. ETR Associates, P.O. Box 1830, Santa Cruz, CA 95061-1830, 1-800-321-4407 (cost $16.95). Choices -Why it is Important for People to have Choice and Power by People First of Washington. Obtained from People First of Washington, PO Box 3 8 1, Tacoma, WA 9840 1, phone (206) 272-2811. Circles of Friends (1988) by Robert and Martha Perske. The Roeher Institute, 91 Granton Drive, Richmond Hill, Ontario L4B 2N5 Canada (cost $12.95). Communicating Emotions by Kathleen Middleton. ETR Associates, P.O. Box 1830, Santa Cruz, CA 95061-1830, 1-800-321-4407 (cost $19.95 for Manual, $2.95 for workbook). Connecting Health, Communication and Self-Esteem by Susan J. Laing and Clint E Bruess. ETR Associates, P.O. Box 1830, Santa Cruz, CA 95061-1830, 1-800-321-4407 (cost $19.95 for Manual, $2.95 for workbook). Developing Skiffs by Gilda Gussin and Ann Buxbaurn. ETR Associates, P.O. Box 1830, Santa Cruz, CA 95061-1830, 1-800-321-4407 (cost $12.95 for Manual, $19.95 for teacher's guide). Effective Self-Advocacy (Report #90-4). University of Michigan, Community Integration, 109 Pattee Hall, 150 Pillsbury Dr SE, Minneapolis, MN 55455 (cost $3.00). Four Conditions of Self-Esteem by Reynold Bean. ETR Associates, P.O. Box 1830, Santa Cruz, CA 95061-1830, 1-800-321-4407 (cost $24.95). History and Goals of People First of Washington (1986) by People First of Washington. People First of Washington, PO Box 381, Tacoma, WA 98401, phone (206) 272-2811. How We Lived and Grew Together (1986) Interstate Seminar on Self-Advocacy for Persons with Developmental Disabilities. InterServ, 3 9 East 5 1 st Street, New York, NY 10022. How We Shared Life Experiences (1987). The Second Inter-State Seminar on Self- Advocacy. InterServ, 866 U.N. Plaza #4 10, New York, NY 100 17. It's Never Too Early, It's Never Too Late - A Booklet About Personal Futures Planning (1989) by Beth Mount and Kay Zwernik. Minnesota Governor's Planning Council on Developmental Disabilities, 300 Centennial Office Building, 658 Cedar Street, St. Paul, N4N 55155, phone (612) 2964018. Making a Contract With Your Advisor (1987) by People First of Washington. People First of Washington, PO Box 381, Tacoma, WA 98401, phone (206) 272-2811. Making and Keeping Friends by Imogene Fox. ETR Associates, P.O. Box 1830, Santa Cruz, CA 95061-1830, 1-800-321-4407 (cost $19.95 for Manual, $2.95 for workbook). Making Friends: Developing Relationships between People with Disabilities and Other Members of the Community (1990). The Roeher Institute, 91 Granton Drive, Richmond Hill, Ontario L4B 2N5 Canada (cost $16.00). Newsletters ... Why & How (1984) by People First of Washington. People First of Washington, PO Box 3 8 1, Tacoma, WA 9840 1, phone (206) 272-2811. "Normalization and the Consumer," from Advancing Your Citizenship -Normalization Re-examined [ed. Gilbert Foss] (1982) by Sharyn Kaplan, Dennis Heath, and Valerie Schaaf. University of Oregon Press, Eugene, OR 97403. Officer Handbook (1978) by People First of Washington. People First of Washington, PO Box 3 8 1, Tacoma, WA 98401, phone (206) 272-2811. Our Voice is New: All About Self-Advocacy (slides, script and tape cassette) (1986) by Cynthia Sutton. Center on Human Policy, Syracuse University, PO Box 127, 724 Comstock Avenue, Syracuse, NY 13244-4230, phone (315) 423-3851. People First Handbook [Blue Book] (1983) by People First of Washington. People First of Washington, PO Box 381, Tacoma, WA 98401, phone (206) 272-2811. People First Language (1992) by Jean Ann Tulloch. Community Interface Services, 2621 Roosevelt Street, Suite 102, Carlsbad, CA 92008, phone (619) 729-3866. People First of Kansas City Evaluation Activities and Self-Advocacy Information (1988) by B. Eddy (ed.). University of Kansas, Institute for Human Development-UAP, 2220 Holmes, Kansas City, MO 64106-2676 (cost $3,00). People With Developmental Disabilities Speak Out on Quality of Life (1990) by Valerie Vivona and Deborah Kaplan. World Institute on Disability, 5 10 -16th Street, Oakland, CA 94612, phone (5 10) 763-4100. Planning Life Directions by Susan J. Hart. ETR Associates, P.O. Box 1830, Santa Cruz, CA 95061-1830, 1-800-321-4407 (cost $19.95 for Manual, $2.95 for workbook). Read My Lips -It's My Choice (1989) by William T. Allen, Ph.D. Minnesota Governor's Planning Council on Developmental Disabilities, 300 Centennial Office Building, 658 Cedar Street, St. Paul, MN 55155, phone (612) 296-4018. Self-Advocacy -A Guide to Teaching Persons with Severe Disabilities About Their Basic Rights and Responsibilities as Members of Their Communities (199 1) by Glen Maxion and Bob Morris. San Diego City Schools, Publication #I-D-9 1. 1, U.S. Department of Education, Office of Special Education and Rehabilitation Services, 4 100 Normal Street, San Diego, CA 92103, phone (619) 299-1901. Self-Advocacy by Persons With Disabilities - Ideas for Creating a National Organization (199 1) by University of Minnesota. University of Minnesota, Research & Training Center on Community Living, National Steering Committee of Self-Advocates, 150 Pillsbury Drive SE, Minneapolis, MN 55455, phone (612) 624-4512. Self-Advocacy Curriculum for High School Students Who've Been Labeled Learning Disabled and Educable Mentally Retarded (1987) by Jaqueline Osborne, et al. Kansas University United Facility (KUAF), 3111 Haworth, Lawrence, KS 66045, phone (913) 8644950. Self-Advocacy Is... by People First of Washington. People First of Washington, PO Box 3 8 1, Tacoma, WA 98401, phone (206) 272-2811. Self-Advocacy: Learning About Rights and Responsibilities (1992) by Michelle Wischkaemper. Community Interface Services, 2621 Roosevelt Street, Suite 102, Carlsbad, CA 92008, phone (619) 729-3866. S elf-Advocacy: Resource and Training Manual (1992) by Jean Ann Tulloch and Stacy Onks. Community Interface Services, 2621 Roosevelt Street, Suite 102, Carlsbad, CA 92008, phone (619) 729-3866. (The) Self-Advocacy Workbook (198 1) by Nancy E. S. Gardner. Kansas University United Facility (KUAF), 3111 Haworth, Lawrence, KS 66045, phone (913) 864-4950. Self-Esteem ABCs ETR Associates, P.O. Box 1830, Santa Cruz, CA 95061-1830, 1-800-321-4407 (cost 50 for $15.00). Self-Esteem in the Classroom by the Regional Opportunities Program. Regional Opportunities Program, 4 100 Normal Street, San Diego, CA 92103, phone 293 -852 1. Serving on a Board of Directors by People First of Washington. People First of Washington, PO Box 3 8 1, Tacoma, WA 9840 1, phone (206) 272-2811. Setting Goals for People First Local Chapters (1986) by People First of Washington. People First of Washington, PO Box 3 8 1, Tacoma, WA 9840 1, phone (206) 272-2811. Speaking Up and Speaking Out: An International Self-Advocacy Movement (1985). People First of Washington, PO Box 3 8 1, Tacoma, WA 9840 1, phone (206) 272-2811. Speaking Up and Speaking Out to Make Services Better (1984) by John O'Brien and Connie Lyle. Georgia Advocacy Office, 1447 Peachtree St. NE, Suite 811, Atlanta, 20309. Starting a People First Chapter by People First of Washington. People First of Washington, PO Box 3 8 1, Tacoma, WA 98401, phone (206) 272-2811. Successful Meetings by People First of Washington. People First of Washington, PO Box 3 8 1, Tacoma, WA 98401, phone (206) 272-2811. "10 Ways to Support a People First Group" from Self-Advocacy Is... by People First of Washington. People First of Washington, PO Box 3 8 1, Tacoma, WA 9840 1, phone (206) 272-2811. Twenty-Nine Recommendations From the Conference Participants (1989) by University of Minnesota. University of Minnesota, Institute on Community Integration, 150 Pillsbury Drive S.E., Minneapolis, MN 55455, phone (612) 624-4512. Unlocking Doors to Self-Esteem by C. Lynn Fox and Francine Lavin Weaver. ETR Associates,* P.O. Box 1830, Santa Cruz, CA 95061-1830, 1-800-321-4407 (cost $16.95). We Are People First -Facts about Persons with Developmental Disabilities, author unknown. United Cerebral Palsy Association, 3821 Calle Fortunada, Suite C, San Diego, CA 92123, phone (619) 278-5420. We Can Speak For Ourselves (1984) by Paul Williams and Bonnie Shoultz. Brookline Books, PO Box 1046, Cambridge, MA 02238-1046. Why We Need People First and Self-Advocacy (1985) by Bob Furman. People First of Washington, PO Box 381, Tacoma, WA 98401, phone (206) 272-2811. Worker's Handbook: Workers Have a Right to Know (1985) by People First of Washington. People First of Washington, PO Box 381, Tacoma, WA 98401, phone (206) 272-2811. Advice for Advisors: People First (1988) by Bill Worrell. National People First, Kinsmen Building, York University, 4700 Keele Street, Downsview, Ontario M3J IP3, Canada (cost $12.00). Consumer Roles in Society (1989) by B. Eddy & G. Cohen. University of Kansas, Institute for Human Development-UAP, 2220 Holmes, Kansas City, MO 64106-2676 (cost $4.00). How to be an Effective Board Member: Manual for Facilitators (1989) by B. Eddy, G. Cohen, C. Rinck & P. Griggs. University of Kansas, Institute for Human Development- UAP, 2220 Holmes, Kansas City, MO 641062676 (cost $5.00). Role of An Advisor in Self-Advocacy Groups (1985) by People First of Washington. People First of Washington, PO Box 3 8 1, Tacoma, WA 9840 1, phone (206) 272-2811. Working with Parents: A Practical Guide for Teachers and Therapists by Roy McOnkey. Brookline Books, P.O. Box 1046, Cambridge, MA 92238 (Cost $21.95). Articles of Incorporation (1990) by People First of Washington. People First of Washington, P.O. Box 381, Tacoma, WA 98401, telephone (206) 272-2811. Learning About Voting and How Government Works: A Voter Education Handbook by People First of Washington. People First of Washington, PO Box 381, Tacoma, WA 98401, phone (206) 272-2811. Tax-Exempt Status for Your Organization [Publication No. 557] (1992) by Internal Revenue Service. Internal Revenue Service, EP/EO Division, McCaslin Industrial Park, 2 Cupania Circle, Monterey Park, CA 91754-7406. Your Rights and Responsibilities by San Diego and Imperial Counties Self-Advocacy Committee. San Diego Regional Center for Developmental Disabilities, 4355 Ruffin Road, San Diego, CA 92123, phone (619) 576-2980. Building Self-Advocacy in the Community: A Model Workshop to Begin a Self-- Advocacy Group (1989), author unknown. Association for Retarded Citizens of the United States (ARC), National Headquarters, Self-Advocacy Committee, PO Box 6109, Arlington, TX 76005, phone (817) 261-6003. Citizens in Our Communities (1990) by People First of Washington. People First of Washington, PO Box 381, Tacoma, WA 98401, phone (206) 272-2811. (The) Heart of Community is Inclusion... (1990) by Minnesota Governor's Planning Council on Developmental Disabilities. Minnesota Governor's Planning Council on Developmental Disabilities, State Planning Agency, 300 Centennial Building, 658 Cedar Street, St. Paul, MN 55155. phone (612) 296-4018. How to be an Effective Board Member (1989) by B. Eddy, G. Cohen & C. Rinck. University of Kansas, Institute for Human Development-UAP, 2220 Holmes, Kansas City, MO 64106-2676 (cost $10. 00). Individual Program Plan (T-PP) Meeting Work Sheet (199 1), Albany, NY: New York State Self-Advocacy Conference. Leadership Training Manual: People First (1987) by Bill Worrell. National People First, Kinsmen Building, York University, 4700 Keele Street, Downsview, Ontario M3J IP3, Canada (cost $12.00). Participation in Your Individualized Service Plan (ISP) (1985) by People First of Washington. People First of Washington, PO Box 381, Tacoma, WA 98401, phone (206) 272-2811. Peer Tutoring Handbook: Promoting Co-operative Learning by Keith J. Topping. Brookline Books, P.O. Box 1046, Cambridge, MA 92238 (Cost $18.95). People First Self-Advocacy Manual (1986) by B. Eddy, G, Cohen. University of Kansas, Institute for Human Development-UAP, 2220 Holmes, Kansas City, MO 64106-2676 (cost $7.00). Reaching for Independence: A Self-Advocacy Curriculum (1986) by Pamela L Halter. Brown County Citizen Advocacy Program 1673 Dousman Street, Green Bay, WI 54307-2770 (cost $8.75). What We Want From Residential Programs (1985) by People First of Washington. People First of Washington, PO Box 3 8 1, Tacoma, WA 9840 1, phone (206) 272-2811. ACT Resource Library (1992), St. Paul, MN. Advocating Change Together (ACT), 1821 University, Suite S-363, St. Paul, MN 55104. National Self-Advocacy Resources (1992). Self-Advocacy Grant Project, Community Interface Services, 2621 Roosevelt Street, Suite 102, Carlsbad, CA 92008, (619) 729-3866. National Toll-Free Numbers for Persons with Developmental Disabilities by National Information Center for Children and Youth with Disabilities. National Information Center for Children and Youth With Disabilities, P.O. Box 1492, Washington, D.C. 20013-1492, phone 1-800-999-5599. People First of Washington Resources and Bibliography (199 1), Tacoma, WA. People First of Washington, P.O. Box 381, Tacoma, WA 98401, telephone (206) 272-2811. Publications Catalog (1990), University of Kansas. University of Kansas, Beach Center on Families with Disabilities, Bureau of Child Research, 4138 Haworth Hall, Lawrence, KS 60045, phone (913) 864-7600. "Resources on Self-Help and Self-Advocacy," from Speaking Up and Speaking Out: An International Self-Advocacy Movement (1985), Tacoma, WA. People First of Washington, P.O. Box 381, Tacoma, WA 98401, telephone (206) 272- 2811. Self-Advocacy Bibliography (1991), ARC. ARC National Headquarters, P.O. Box 1047, Arlington, TX 76004, telephone (817) 261-6003. Self-Advocacy Bibliography (1987), Center on Human Policy. Human Policy Press, Syracuse University, P.O. Box 127, University Station, Syracuse, NY 13210, phone (315) 423-3851. Self-Advocacy Programs Directory (1990), by Association for Retarded Citizens. Association for Retarded Citizens (ARC) of the U.S., National Headquarters, P.O. Box 6109, Arlington, TX 65005, phone (817) 261-6003. 1991-92 Catalogue (199 1) by the Roeher Institute. G. Allen Roeher Institute, Kinsmen Building, York University, 4700 Keele Street, Downsview, York, Ontario M3J 1PE, Canada, phone (416) 661-9611. Advocates' Voice. Arlington, TX Association for Retarded Citizens (ARC) of the United States. Available from ARC, P.O. Box 6109, Arlington, TX 76010, phone (817 261-6003. People First Newsletter. Tacoma, WA: People First of Washington. People First of Washington, P.O. Box 381, Tacoma, WA 98401, phone (206) 272-2811. A New Way of Thinking (1987), 23 minutes, Minnesota Governor's Planning Council on Developmental Disabilities. University of Michigan, Community Integration, 109 Pattee Hall, 150 Pillsbury Dr SE, Minneapolis, NIN 55455 (cost $35.00). Our Voices Count Self-Advocacy Now, 25 minutes, Self-Advocacy of New York. Self-Advocacy Association of New York State, Inc., 75 Morton Street, 13E, New York, NY 10014, (cost $10.00). People First Leadership Training Cassettes National People First, Kinsmen Building, York University, 4700 Keele Street, Downsview, Ontario MH IP3, Canada (cost $12.00). Self-Advocacy for People with Developmental Disabilities-A Trainer's Manual [A five-part video series with manual] by Phillip Browning, Ph.D. and Cindy M. Rhoades. James Stanfield & Co., Inc., PO Box 41058-S, Santa Barbara, CA 93140, phone 1-800- 421-6534 (cost $149.00). Self-Advocacy: Learning About Rights and Responsibilities (1992) by Michelle Wischkaemper. Community Interface Services, 2621 Roosevelt Street, Suite 102, Carlsbad, CA 92008, phone (619) 729-3866. Speaking for Ourselves, 17 Minutes. National People First Project of Canada (1988). National People First, Kinsmen Building, York University, 4700 Keele Street, Downsview, Ontario M3J 1P3, Canada (cost $23.00). We Can Do It. National People First Project of Canada (1987). Landmark Films, 3450 Slade Run Dr., Falls Church, VA 22042 (cost $160.00). SELF-ADVOCACY BIBLIOGRAPHY Materials available from The Arc National Headquarters, P.O. Box 104 7, Arlington, Texas 76004, (817)261-6003,(817)277-0553 TDD. (Prices include shipping and handling.) Advocates' Voice. A newsletter on self-advocacy. No charge for self-advocacy groups. A Call to Action: 7he Roles of People with Mental Retardation in Leadership. (1992). A handbook outlining the proceeding from the leadership forum held during The Arc's 1991 national convention. Discusses barriers and strategies to supporting leadership of people with mental retardation. 1-9 copies, $3.50 ea.; 10-29 copies, $2.50 ea., over 29 copies, $1.50 ea. Bill of Rights Series: Three cartoon-style booklets -The First Amendment, The Voting Amendments, Arrest and Trial Amendments; two games - Graphistory, a board game, and Old King George, a card game; a poster; three book marks; and a Teachers 'Guide (1990). These materials were prepared for use in helping to educate high school students with mental retardation about our constitutional system of government. These materials help people learn about their fights and responsibilities as citizens of the U.S. and about the history of our Constitution. $5.00. Self-Advocacy Bibliography. (1997). Books, pamphlets, video cassettes and other materials on self-advocacy from around the United States and Canada. Single copies free by sending self-addressed, stamped envelope. Directory of Self-Advocacy Programs. The Arc's Self-Advocacy Committee (1997). A listing of self-advocacy groups in the United States, Canada and Mexico. Single copies free by sending self-addressed, stamped envelope (Extra postage required). Video: Self-Advocacy: Supporting the Vision. The Arc of the U. S. and The Arc of New Mexico (1992). A video discussing the importance of chapters of The Arc supporting the best practices of self-advocacy and self-determination. Members of The Arc - $18.00; non-members - $23.00. Self-A dvocacy: Supporting the Vision. The Arc of the U. S. and The Arc of New Mexico (1992). An accompanying handbook to the video. Provides additional information and detail on the importance of supporting self-advocacy and steps to organizing a self-advocacy group. 1-9 copies, $3.50 ea.; 10-29 copies, $2.50 ea., over 29 copies, $1.50 ea. Ae Americans with Disabilities Act (ADA) and Working. The Arc of the U. S. and Great Lakes Disability and Business Technical Assistance Center. (1993). This booklet is for people with mental retardation and is written in easy-to-read language to explain basics of Title I (employment) and what to do if discrimination occurs. 1-9 copies, $3.50 ea.; 10-29 copies, $2.50 ea.; over 29 copies, $2.00 ea. Disabilities Act and Working: A Curriculum to Teach Older Self-Advocates About the ADA and Employment. The Arc of the U.S. (1996). This multimedia training guide can be used to teach self-advocates, and especially older self-advocates, about the ADA, discrimination and how to resolve disability and age-related employment problems. $15.00. Learning About the Americans with Disabilities Act and Title II.- Opening Up Government Services & Activities for People with Disabilities. The Arc of the U.S. (1996). This easy-to-read guide is geared toward self-advocates to teach about the Americans with Disabilities Act (ADA) and title II, the ADA's provisions for state and local government. The guide carefully describes title II, how to recognize discrimination and "special rules" that might apply to various government activities and services. Included with the guide is an audio cassette tape that can be used to follow-along while reading. $15.00. Learning About the Americans with Disabilities Act and Title III: Opening Up Places of Public accommodations for People with Disabilities. The Arc of the U.S. (1996). Describes in easy-to-read language, the ADA title III (public accommodations - hotel, restaurants, stores, etc.) including how to recognize and solve issues of discrimination. Included are ideas that self-advocates can give to public accommodators, resources and inserts that can be photocopied and handed out to title III entities. Publication is accompanied by a read-along audio tape. 72 pgs. $15.00. The Setf-Advocacy Movement. Research and Training Center on Community Integration, Center on Human Policy, Syracuse University. A two-page information sheet discussing the self-advocacy movement, the history, why these groups are important, barriers, and what local chapter of The Arc can do to promote self-advocacy. Single copies free by sending self-addressed, stamped envelope. $13.00 per 100. Know Your Rights if You Get Arrested. The Arc of the U.S. (1996). A two-sided reproducible brochure slick of information for self-advocates on what to do when in contact with law enforcement and/or the courts. Single copies free by sending self-addressed, stamped envelope. $13.00 per 100. 10 Steps to Independence: Promoting Setf-Determination in the Home. (1992). An overview of the family's role in promoting attitudes and abilities leading to self-determination. Provides ten ways that the family can play a critical role in teaching their son or daughter to be self-determined. Flier. Single copies free. Send self-addressed, stamped envelope. $13.00 per 100. Voting. (Revised 1992) A student brochure. Answers questions about voting: What is voting? Who can vote? When and how can I vote? Single copies free by sending self-addressed, stamped envelope. $13.00 per 100. Voting: Preparingfor Citizenship - A Guidefor the Teacher and Citizen Advocate. (Revised 1992). Flier on voting. Single copies free by sending self-addressed, stamped envelope. $13.00 per 100. Materials available front G. Allen Roeher Institute, Kinsmen Bldg., 4700 Keele St, Downsview, Ontario, Canada M3J My (416) 661-9611 (All prices quoted in U.S. currency. Add 10 percent of price for mailing to United States. All orders must be prepaid. Some discounts available for ordering quantities.) Justice For Some: A discussion book on law for people with mental handicaps. Harvey Savage (1983). 95 pages. Case studies and answers to legal questions. $8.31. Order #1119. People First: Advicefor Advisors. Bill Worrell (1988). 84 pages. A handbook written for all who act as advisors to self-advocacy groups like People First or who want to act in this capacity. $8.31. Order #5036. People First: Leadership Training Manual. Bill Worrell (1987). 57 pages. For those who want to know what the organization represents and how to start and operate their own group. $8.3 1. Order #5039. This Book is About Rights. British Columbians for Mentally Handicapped People (1988).22 pages. A clearly written and illustrated book for people with mental handicaps telling about basic human rights. $2.91. Order #5037. Materials availablefrom Human Policy Press, P.O. Box 127, Syracuse, N. Y 13210, (315) 443-2761 Ordinary Moments: The Disabled Experience. Alan Brightman (Ed.) (1985). This book contains the reflections of people with disabilities on their lives, experiences and struggle for human rights. $10.95. Our Voice is New: All About Self-Advocacy. Cindy Sutton (1986). A slide show which explains what self-advocacy is, why it is important, what issues are important and what self-advocates do. 114 slides, script and tape cassette. $50.00. Materials available from Kansas University Affiliated Facility, 1052 Dole, University of Kansas, Laivrence, Kan. 66045, (913) 864-4950 A Self-Advocacy Curriculum for High School Students & Self-Advocacy Curriculum Teacher's Manual. Jacqueline Osborne, et al. (1987). Provides basic instruction for secondary students in the principles of self-advocacy. The curriculum is comprised of 15 lesson plans, designed to teach students 1) how to assess their own needs and decide what they want; 2) about their legal fights and responsibilities; and, 3) how to negotiate and communicate effectively. The curriculum includes principles, checklists, suggested role plays, and other activities. $11.50. The Self-Advocacy Workbook. Nancy Gardner (198 1). One of the most comprehensive books ever written about how to form self-advocacy groups. Designed specifically for people with developmental disabilities, it takes you step-by-step through the process of starting your own group. It also provides ideas for what to do during meetings and how to put self-advocacy into practice. $15.00. 7he Advisor's Guide boo for Self-Advocacy. Jeff Woodyard (198 1). A companion book to The Self-Advocacy Workbook, written specifically for the advisors of self-advocacy groups. Provides advisors with practical advice on how and when to best help a self- advocacy group. In addition, it has numerous valuable resources, ranging from names and addresses of self-advocacy groups nation-wide, to sample by-laws. $6.00. ANDI for Consumers. William Allen & Nancy Gardner (198 5). A workbook designed to help people with disabilities evaluate the places they live and work. It is written in simple language and has large print. It is a step-by-step guide to learning how to evaluate programs such as group homes, sheltered workshops, and state institutions. Although it is written specifically for consumers, it is also an excellent means by which staff members can evaluate their own programs. Includes training guide and complete set of worksheets to be used on an actual evaluation. $6.00. Getting on Board. Barbara Gibbons & Jacqueline Osborne (1982). Written especially for consumers with simple words, large type, and illustrations. This booklet explains the basic principles of how to participate on decision-making boards. $5.00. Materials available from People First of Washington, P. 0. Box 381, Tacoma, Wash. 98401, (206) 272-2811 (Indicate the quantity and title of the materials you wish to order. Please make check or money order payable to People First of Washington -no cash please. Postage and handling are included in the prices quoted above. Add 10 percent for postage when ordering outside the United States. If your organization is unable to pay for requested materials, People First of Washington will attempt to provide as many of the materials as possible.) Assertiveness. 12 pages. A curriculum for teaching the difference between non-assertive, assertive and aggressive behavior. Includes graphics for non-readers and skits for practice. $ 1. 00. Evaluating Programs (Seminar). 8 pages. Description/discussion of how programs can help/hurt persons with disabilities. Suggestions for change included. $.50. History & Goals of People First of Washington. 8 pages. A complete history of how and why People First began in Washington. Follows the growth of the organization to include 35 chapters and over 1,000 members. $.50. Officers Handbook. 21 pages. Information on the duties, roles and responsibilities of a good officer. Includes guidelines for setting up an agenda, conducting a meeting, voting on chapter issues and electing officers. $2.00. Participation in Your Individual Service Plan. 18 pages. A complete guide to use when developing your Individualized Service Plan or Individualized Educational Plan. Over 100 illustrations are used for persons who have difficulty reading. $2.00. People First. 48 pages. An encompassing look at People First support groups, meetings, elections, workshops, conventions and core groups. $4.00. People First Newsletter. 8 pages. Published quarterly to keep its readers up-to-date about People First. $5.00 for out-of-state requests. Renting an Apartment. 14 pages. Includes specific information on what to look for when signing a lease, landlord and tenant duties, paying rent, eviction and moving out. $1.00. Role of an Advisor. 20 pages. A chapter from the book, International Self-Advocacy Leadership Conference which gives advisors input that may assist them as they begin to advise a People First chapter. $2.00. Setf-Advocacy is... 1 page. A brief, illustrated description of what People First members feel self-advocacy is all about. Free. Setting Goals. 2 pages. An illustrated approach to help a chapter survey its members to determine what their priority goals will be. Free. Speaking Up & Speaking Out. 89 pages bound. This book is the story of the International Self-Advocacy Leadership Conference that was held in Tacoma, Wash., in July of 1984. We feel that this is a great source of information regarding self-advocacy by citizens with developmental disabilities. $11.50. Starting a People First Chapter. 13 pages. A "grass roots" approach to starting a local chapter in your community and ensuring that its growth continues. $.50. Successful Meetings. 9 pages. A step-by-step description of how to organize a meeting that allows participants to be actively involved. $.50. Voter Education. 14 pages. A four-part curriculum on the rights and responsibilities of voting. Describes each of the federal, state, county and city governments and the officials for which one votes. $1.00. What We Want From Employment Programs. 13 pages. Offers suggestions to employment program providers about what consumers are looking for in their employment program. Illustrated. $1.00. What We Want From Residential Programs. 12 pages. Offers suggestions to care providers about what consumers are looking for in their residential program. Illustrated. $3.00. Worker's Handbook. 12 pages. A helpful guide for employers to use in developing handbooks for their workers. Illustrated. $2.50. Materials availablefrom University of Missouri-Kansas City, 2220 Holmes, Kansas City, Mo. 64108-2676, (816) 276-1770 (All prices include shipping and handling. Send check, money order, or purchase order.) Consumer Roles in Society. B. Eddy & G. Cohen (1989). A manual for training board members and staff on self-advocacy and the importance of involving people with disabilities in decision-making. $4.00. How To Be An Effective Board Member. B. Eddy, G. Cohen & C. Rinck (1989). A manual for self-advocates on how to be a good board member. It includes rules used in meetings, appropriate behaviors and how to prepare for a board meeting. $1.00 from each sale of this book will be donated to People First activities in Missouri. $10.00. How To Be An Effective Board Member: A Manual For Facilitators. B. Eddy, G. Cohen, C. Rinck & P. Griggs (1989). A manual which describes the training and support process of assisting self-advocates on boards. It also contains a list of training information and a list of useful resources. $5.00. Community Advocacy Press. A newsletter on self-advocacy. Contact Capabilities Unlimited Inc., 2495 Efie Ave., Cincinnati, OH 45208. No charge. Freedom of Speech Setf-Advocacy Newsletter. A newsletter on self-advocacy around the country. Contact The Open Door Club, P.O. Box 454, Northampton, Mass. 01061. No charge. Leadership Plus. Michelle Hoffinan. Developed by Tulsa ARC. A Facilitator's Manual and Participant's Manual to teach people with disabilities the important points of being leaders. A complete training course which mixes fun and education. Facilitator's Manual $11.00; Participant's Manual $8.50. I Make a Motion Too. (pamphlet) $ 1. 00. Order from Tulsa ARC, 1400 S. Boston, S-600, Tulsa, Okla. 74119. Shipping and handling included. National Conference on Self-Determination. A booklet of the recommendations and reports from a conference on self-determination held in Arlington, Virginia from January 9-10, 1989. Free copies available from Institute on Community Integration, 6 Pattee Hall, University of Minnesota, 150 Pillsbury Dr. SE, Minneapolis, Minn.55455. Our Voices Coutit - Self-Advocacy Now. A 25-minute videotape on self-advocacy narrated by Geraldo Rivera. $ 10.00. Order from The Self-Advocacy Association of New York State, Inc., 75 Morton St., New York, N.Y. 100 14. Reaching for Independence: A Setf-Advocacy Curriculum. Pamela L. Halter (1986). A curriculum to teach self-advocates a variety of skills to become more independent in the community. $7.50 plus $1.25 shipping and handling. Order from Brown Co. Association for Retarded Citizens, P. 0. Box 12770, Green Bay, Wisc. 54307-2770. Read My Lips: It's My Choice. William T. Allen (1989). A resource guide to help self-advocates get the services they need and want to become more independent. $9.95 plus $2.00 shipping and handling. Order from Minnesota Book Store, 117 University Ave., Ford Bldg. Main Floor, St. Paul, Minn. 55155, (612) 297-3000. Self-Advocacy for Persons With Developmental Disabilities. Philip Browning & Cindy M. Rhoades. Five programs on videotape covering an overview of the self-advocacy movement, starting a group, role of the advisor, officer training and organizing a convention. Package includes videotape and Teacher's Guide. (Free 30-minute video "People First" with purchase.) $149.00 plus 8 percent for shipping and handling. Order from James Stanfield Publishing Company, P.O. Box 41058, Santa Barbara, CA 93140. Toll free 1-800-421-6534. Speakeasy: People With Mental Handicaps Talk Out About 7-heir Lives in Institutions and ill the Community. Karen Melberg Schwier (1990). A collection of stories about people with developmental disabilities speaking about their lives in institutions and the community. $12.00. Contact PRO-ED, 8700 Shoal Creek Blvd., Austin, Texas 78758, (512) 451-3246. Speaking for Ourselves. National People First Project of Canada (1988). A 17-minute videotape featuring Patrick Worth, President of People First of Ontario, speaking on how People First made him a strong self-advocate and on issues of sheltered employment and real employment. $18.28 U.S. currency (includes shipping and handling). Order from National People First Project, Kinsmen Bldg., 4700 Keele St., Downsview, Ont., Canada M3J IP3, (416) 661-9611. Stigma: Stereotypes and Scapegoats. Maureen Crossmaker & David Merry (eds.) (1990). A collection of writings, poems, songs and transcripts from speeches depicting how people with disabilities feel about themselves and society. The book was the result of a conference on stigma. $7.00 (includes shipping and handling). Order from Ohio Legal Rights Service, 8 East Long Street, 5th Floor, Columbus, Ohio 43266-0523, (614) 466-7264. Transition Summary: Self-Determination. A series of articles and stories on self-determination. 1988. Single copies are free by contacting the National Information Center for Children and Youth with Handicaps, P.O. Box 1492, Washington, D.C. 20013. We Can Do It. National People First Project of Canada (1987). A 30-minute award- winning videotape on self-advocacy. $150.00 plus $5.00 shipping & handling. Order from Landmark Films, 3450 Slade Run Dr., Falls Church, Va., 22042. Toll free 1-800-342-4336. Purchase orders or prepaid orders only. We Can Speakfor Ourselves. Paul Williams & Bonnie Shoultz (1984). A book of practical advice to help self-advocates, parents and professionals learn about the rights of people with developmental disabilities. This book was written for and by a group of self-advocates. $17.95 plus $3.00 shipping and handling. Order from Brookline Books, P.O. Box 1046, Cambridge, Mass. 02238, (617) 868-0360. We the People. Arc/Florida . An illustrated book (1988) on the basic rights of self-advocates including government benefits, independent-living and voting and a 15 miinute videotape (1989) providing step-by-step instructions on how to set up a self-advocacy group. Book is $3.00, videotape is $12.00. Order from ARC/Florida, 411 E. College Ave., Tallahassee, Fla. 32301, (904) 681-193 1. Whatever You Decide: A Workbook for Teaching People "o Are Mentally Retarded How to Make Choices and Assert Themselves. Jennifer Moore-Johnson (1983). This book provides a program for teaching decision-making and assertiveness skills to consumers at all levels of comprehension. It introduces several effective approaches for teaching (for example, using role plays). Order from Jennifer Mohr Johnson, 23 8 Hampton Drive, Venice, CA 9029 1. Revised. Contact for price information. June 1997 Developing Consumer Leadership: An Annotated Bibliography Currently in the United States and Canada there is a growing acceptance of the idea that consumers of mental health services should have increased involvement and participation in the decision and policy making which affects mental health services. However, many professionals, family members and consumers lack the specific technical knowledge to develop this belief into reality. This annotated bibliography is designed to act as a resource guide to many of the existing resources which may be used to increase consumer participation, involvement, advocacy and leadership in the field of mental health. This document focuses primarily on the trainings, programs, consultants and written material which can provide professionals, families, and consumers/survivors with the specific technical assistance to encourage and develop consumer leadership. Compiled by: Nick Nichols, M.S.W. and Henry Palmer, M.S.W. Please direct comments/feedback to: Nick Nichols Vermont Department of Developmental and Mental Health Services 103 S. Main Street, Weeks Building Waterbury, VT 05671 802-241-2625 E-mail: Nnichols@ddmhs.state.vt.us For additional copies contact: Center for Community Change through Housing and Support Trinity College of Vermont Attn: Staci Visco 208 Colchester Avenue Burlington, VT 05401 802-658-0000 http://ccc-international.org PROGRAMS, TRAININGS AND CONSULTANTS Advocacy Unlimited, Inc. Yvette Sangster, Director 300 Russell Rd. Wethersfield, CT 16109 1-800-573-6929 E-mail: ysangster@mindlink.org Website: http://www.mindlink.org Advocacy Unlimited, Inc. "maintains that primary consumers of mental health services understand their own needs and desires, and that of their peers, better that anyone else, and that they are capable of acting on their own behalf." The organization "educates consumer leaders in advocacy skills that will empower them to play a central role in shaping the policies and services that affect their lives. The vision is to educate enough people to build a strong, vocal, and united grass roots movement in Connecticut." Advocacy Unlimited offers a leadership-training program in which consumers learn advocacy and public speaking skills through an intensive 14-week semester and then receive on-going advocacy support. Advocacy Unlimited also maintains a Advocacy Alert network which alerts participants about advocacy efforts and issues which may require action. The director is also available for private consultation. Deborah Anderson Northeast Independent Living Program 17 Forest Street Byfield, MA 01922 978-687-4288 Extensive experience as consumer organizer and director of statewide, grassroots political action organization for people with disabilities Current work involves organizing patients in local state hospital where she developed and consults to Patient Advisory Committee Coordinates Peer Advocacy Project for people on inpatient unit, teaches self-advocacy skills for treatment team meetings, competency and commitment hearings Developed curriculum for intensive training in peer counseling for consumers/survivors Provides lectures/training on recovery, empowerment, organizing consumer/survivor groups, organizational development, involving consumers on mental health boards and committees, and consumer-run conferences Provides long term consultation and supervision to state mental health divisions, provider agencies and consumer/survivor organizations Arkansas Consumer Leadership Initiative Kathy Schmidt, Arkansas Alliance for the Mentally Ill Website: http://www.nasmhpd.org/ntac/arbrag3.htm "The Consumer Leadership Initiative (CLI) is a collaborative effort designed to insure meaningful participation of consumers and families in the planning, development, implementation, and monitoring of mental health services. CLI was formed by consumers, families and their advocates in January of 1996 to be able to more effectively work with policy makers in the process of restructuring the mental health delivery system. CLI is aimed at building a competent and confident leadership pool for present and future participation of family members and consumers in making changes within the state's mental health system. CLI objectives are: To identify and develop leadership throughout Arkansas To acquaint this leadership with issues such as managed care To challenge these leaders with developing a process of information interchange which keeps consumers and families informed about system; and To keep policy makers informed about consumer concerns Fabricio Balcazar Department of Disability and Human Development University of Illinois at Chicago (M/C 626) 1640 West Roosevelt Rd. Chicago, IL 60608 312-996-4744 Served as instructor and trainer at the Leadership Academy (see below) in Idaho Specialized experience working with minority populations (especially Latinos) Assisted in modification of existing grassroots advocacy workbook Currently designing, implementing and evaluating programs and interventions for minority youths with disabilities Pat Capponi Ontario, Canada 416-465-2212 (A-Way Express) Authored several materials on consumer leadership (see below) Has provided extensive consumer leadership trainings in Canada, including the Psychiatric Survivors Leadership Facilitation Program Available to work with former patients/psychiatric survivors to develop leadership skills. Available to work with staff to help them view consumers as more than one-dimensional "patient" Cynthia Clapper, M.S. Mental Health Services Director Community Partnerships of Idaho, Inc. 3663 Collister Drive Boise, ID 83703 1-208-344-7473 E-mail: Suntia@aol.com Has extensive experience in developing and coordinating the prototype for the Leadership Academy, which originated in Idaho and was designed to teach grassroots advocacy skills to consumers/survivors and their families members Has provided consultation and training on the Leadership Academy to consumers/survivors and advocates in other states Has provided training, consultation and technical assistance in areas such as communications, assertiveness, coping with stress, fund raising (including grant writing), problem-solving, networking and attracting allies Has experience developing and implementing needs assessment tools, facilitating town meetings and assisting with service evaluation through tailored satisfaction surveys Spent several years as the statewide liaison to local and statewide consumer/survivor and family member self-help groups Available for consultation Community Resources Consultants of Toronto Leslie Morris 120 Eglinton Ave. E. Ste. 800 Toronto, Ontario M4p 1E2 416-482-4103 E-mail: crct@interlog.com Involved in designing and delivering leadership development programs with Consumers/Survivors over last few years Emphasizes experiential adult learning approach with role plays, group discussions, theory and "practicum experience" for survivors to practice/refine skills (much like a student placement in an organization) Training topics include: communication skills, participating in meetings (e.g. chairing, taking minutes), assertiveness training, and group work skills (including identifying group roles, public speaking and team building)  Worked with consumers/survivors to design and deliver sensitivity workshops for staff and board members to enhance partnerships within organization Consumer Development Project Coordinator: Shelagh Turner, B.A., MSc. 1C-1864 Spall Rd. Kelowna, British Columbia V1Y 4R1 1-250-868-9611 E-mail: CMHACDP@awinc.com Understanding that each person gets something different from participating and making decisions, the focus of the Consumer Development Project is to ensure that people with a mental illness are meaningfully involved in decision making at every level. The CDP has worked to develop a staff of consumers who can both act as system advocates and assist other consumers in enhancing their own participation. The CDP provides and facilitates training opportunities which assist individuals in building their skills and provides them with information to help them make informed decisions about mental health services and supports. CDP staff is available to present the work that they have done and share their experiences with interested parties. The staff have extensive experience in the following areas: Developing staff made up of individuals who have experienced significant mental health problems Developing consumer networks Acting as effective systems advocates in key decision making boards and committees Acting as mentors to other consumers who need support in participation Facilitating forums on such topics as visioning, brainstorming or needs assessment Facilitating systems evaluation of mental health services with participation by all key stakeholders Developing and presenting workshops for consumers (topics include: board and committee survival, communication skills and resolving conflicts, tools for wellness and coping, and understanding the health and mental health systems) Janice Duda-Kosar Canadian Mental Health Association, Hamilton-Wentworth Branch 182 Rebecca Street Hamilton, Ontario L8R 1C1 1-905-521-0900 Member of E/Merging committee, whose purpose is to develop an ongoing approach to provide consumers with basic leadership, communication and organizational skills for community services. Facilitator of E/Merging workshop for consumers: designed to make boards and committees more familiar, teaches skills and provides training on how to be an active community/board member and understanding the "language" of boards. Available for consultation Robert Hess Senior Consultant William M. Mercer, Inc. 2390 E Camelback RD.. Suite 240 Phoenix, AZ 85016 602-955-9682 Has extensive experience in developing and coordinating Leadership Academies in Idaho and West Virginia (see below) Karen Hoekstra Mountain States Group 1607 W. Jefferson Boise, ID 83702 208-336-5533 Served as the Leadership Academy Coordinator in Idaho, 1993-1995 Currently Project director for Idaho's new Leadership Academy Planning Project, 1997- 1998 May be contacted for information on how the Leadership Academy--a grassroots leadership and advocacy training project for consumers--worked and can offer consultation on replication The Leadership Academy 625 8th Street, Room 208 Huntington, WV 25701 1-800-598-5653 "The mission of the Leadership Academy for Consumers and Families is to train consumers of mental health services--and their families--to be effective advocates and to have an integral role in shaping mental health services." Designed to instill and enhance leadership skills, motivation, and empowerment, the Leadership Academy focuses on teaching consumers and family members three primary skills: 1) How to keep informed on local and state mental health issues which affect them; 2) How to decide the best action steps to take on their concerns; 3) How to organize a local advocacy group, or reorganize an existing one, into a respected and effective voice on mental health. The academy provides several options for interested out-of-state parties: A team of consultants can be sent to you to teach the how-to's of setting up the Academy in your area. The consultants will cover such topics as how to recruit trainers and participants, what type of curriculum really works, what pitfalls to avoid, and how to network A consumer or family member can be sent to attend one of the West Virginia's Leadership Academy training sessions to observe first-hand and then decide on further consultation and assistance. (Each session, 3 slots are set aside for consumers/family members from other states who are interested in setting up an academy in their area) A group of leaders in your area can meet with the Leadership Academy's team of consultants in West Virginia for face-to-face technical assistance. For those interested in setting up a Leadership Academy in their area, written training material is also available. Rebecca McAuley Institute for Consumer Power in Mental Health Management 413-584-1460 Helps organizations develop a culture and service system which respects and promotes the role of consumers in planning, providing and evaluating services Provides training for employees of service organizations and state agencies in development of positive perspectives on consumer participation Assists in providing a forum within the human service establishment for consumer groups to more effectively hold the public and private mental health system accountable Available to facilitate increased consumer participation and work on individual basis to cultivate leadership qualities Terri McCaslin Leadership Academy 13559 McCall Ct. NE Albuquerque, NM 87123 505-271-1880 Extensive experience with development and implementation of Leadership Academy in New Mexico Uses cross-disability model with special emphasis on working with individuals with learning disabilities Developing model for use with adolescents and Native Americans National Empowerment Center 20 Ballard Road Lawrence, MA 01843-1018 1-800-POWER-2U "The mission of the National Empowerment Center is to carry a message of recovery, empowerment, hope and healing to people who have been diagnosed with mental illness." The NEC is dedicated to providing mental health consumers with "information that they might need in order to regain control over their lives and the resources that affect their lives." The NEC offers the following resources: (taken from the NEC brochure) A national directory of mutual support groups, drop-in centers and state-wide organizations Networking and coalition building A collection of significant audio tapes, including Alternatives and NARPA workshops, institutes and keynote addresses Staff available for workshops, public speaking and technical assistance, including training and consultation on removing barriers to effective board participation Education and training to providers from a consumer/survivor perspective A data base with hundreds of topics of interest to consumers/survivors relating to empowerment and recovery A toll-free 800 line for information and referral National Mental Health Consumer's Self Help Clearinghouse 1211 Chestnut Street, Suite 1000 Philadelphia, PA 19107 1-800-553-4539 "The mission of the Clearinghouse (a consumer-run national technical assistance center established in 1986) is to promote consumer/survivor participation in planning, providing and evaluating mental health and community support services, and to provide technical assistance and information to consumers/survivors interested in developing self-help services and advocating to make traditional services more consumer-oriented." Through conferences, and training events, technical assistance materials and other initiatives, the Clearinghouse promotes the development of consumer/survivor movement leaders who can effect change in the mental health area and have an impact on public opinion in regard to fighting the stigma of mental illness and discrimination against people with mental illnesses. The Clearinghouse also assists in the establishment and development of consumer-run programs and provides technical assistance to traditional mental health providers to promote consumer-oriented policy. State Healthcare Reform Advocacy Resource Center National Mental Health Association Jesse Gately, Manager 1021 Prince Street Alexandria, VA 22314-2971 703-838-7524 E-mail: nmhajesseg@erols.com The primary role of the State Healthcare Reform Advocacy Resource Center is to provide on-going technical assistance to statewide mental health coalitions, as well as other advocates, to facilitate meaningful healthcare reform. The Center focuses on issues such as managed care, consumer rights, parity, insurance reform, funding issues, and system restructuring. Mental Health advocates can rely on the Center to: Respond to requests for information and research Produce informative publications on managed care and state healthcare reform topics Identify experts on specific issues and arrange for consultation INVOLVEMENT/PARTICIPATION: OVERVIEWS Church, K. & Reville, D. (1989). User involvement in the mental health field in Canada. Canada's Mental Health, 37(2), 22-25. This article defines "user involvement" as any process in which users (in this instance, persons commonly referred to as the "chronically mentally ill") can exercise some control over decisions that affect their lives. The authors discuss the state of user involvement in the mental health filed in Canada, using examples from the literature and from practice. They describe three categories of involvement: consumer control, coalitions/partnerships, and consumer participation. A focus on power reflects the author's belief that the growth of user involvement depends on the rate at which power relationships change within the mental health field. Increased user involvement is both a key factor in and an important outcome of re-thinking how we respond to mental health issues. However, important obstacles remain, notably lack of financial and attitudinal support for user involvement.* Church, K. (1986). From consumer to citizen: Building a framework for support. (Available from Canadian Mental Health Association-National, 2160 Yonge St., Toronto M4S 2Z3, [416] 484-7750). This document compiles the proceedings from the conference: "Empowerment Through Partnership: A Search Conference on Mental Health Advocacy," sponsored by the Canadian Mental Health Association, which brought together people from the self-help movement, community service providers and professionals from the formal psychiatric system. The document includes process notes, the keynote address and personal perspectives on the partnership process.* Dewar, G. (1992). Consumer/survivor participation: A background paper. Prepared on behalf of the Consumer/Survivor Action Task Force of the International Association for Psychosocial Rehabilitation (IAPSRS) - Ontario Chapter. 14 pages. This paper outlines the history of consumer/survivor involvement in IAPSRS - Ontario Chapter. Initially, the Chapter was reactive to the issue of consumer participation rather than proactive. This paper addresses the definition of "consumer/survivor", why participation is needed in IAPSRS, and what forms this should take (e.g., opportunities for leadership as board or committee members, involvement in program development, leadership as board committee members, involvement in program development, operation, and evaluation). Factors favoring increased consumer participation, and barriers preventing full participation are addressed. Lastly, guidelines are offered to facilitate a step-by-step process for true partnership.* Leiper, R. & Field, V. (Eds.). Counting for something in mental health services: Effective user feedback. Adlershot, U.K.: Averbury. This book brings together a wide array of opinions and experiences on consumer involvement in the mental health system in the United Kingdom. Both consumer and professional viewpoints are represented. The first section addresses consumer feedback and quality assurance while the second addressed problems and strategies in creating change. The sections address two different "strands" in the consumer involvement movement: from the "top" down, services are being pressured to be more consumer-oriented, while from the "bottom" up, consumers are asserting their right to be heard and involved in planning and operating the services they receive. Chapter headings include, "What Does it Mean to Have User Participation in Planning?" and "User Feedback and Organizational Change."* Lerner, M. (1986). Surplus powerlessness: The psychodynamics of everyday life.. And the psychology of individual and social transformation. Oakland, CA: The Institute for Labor and Mental Health. In recent years some theorists have come to believe that many of the crises of survivor organizing stem from surplus powerlessness. Lerner describes this as "the set of feelings and beliefs that make people think of themselves a s even more powerless than the actual power situation requires, and then leads them to act in ways that actually confirm them in their powerlessness" (11). Failure to actualize possibilities can be understood as the result of a deep belief that nothing can change. Lerner sees this as a socially (and psychologically) constructed phenomenon. He traces its emergence primarily through the family and the organization of work, and proposes ways of resolving these issues. His vision for the future involves liberatory politics, and religion and therapy as vehicles for the growth and expression of compassion. This book is highly relevant to the changes demanded of both survivors and mental health professionals in our evolving relationships.* Lord. J. (1989). The potential of consumer participation: Sources of understanding. Canada's Mental Health, 37 (2), 15-17. The potential for consumer participation in mental health services involves three "sources of understanding": listening to consumers and their perspectives, gaining insight from partnership models for change, and learning from consumer-directed organizations. Ways of structuring consumer participation to maximize empowerment and equality are noted.* Milne, T. & Szathmary, T. (1996, February). Partnerships: A work in progress (A discussion guide for Canadian Mental Health Association volunteers and staff). (Available from Canadian Mental Health Association-Ontario, 180 Dudas St. W., Ste. 2301, Toronto, Ontario M5G 1Z8, [416] 977-5580). Mental health reform invites new opportunities for stakeholders to work in partnership. However, there is lack of policy direction due to the ambiguity around the nature of, and necessary circumstances for, working partnerships. The work of the Consumer/Survivor and Family Task Force was to begin to define the meaning of partnerships, and the values and conditions which foster a flourishing and genuine partnership environment in mental health. This paper is presented as a "work in progress" that will change as working partnerships emerge. Partnership will be defined and contextualized through examining the vision, key components and barriers to change in achieving true partnership.* Milroy, A & Hennely, R. (1985, November). Changing our ways: Steps towards redundancy. A paper prepared for the annual conference of MIND: From Patients to People, United Kingdom. This paper is about reshaping professional practice in order to transfer power to clients.* Pape, B. (1989) The consumer participation task group: Consumer involvement at the Canadian Mental Health Association. Canada's Mental Health, 37 (2), 32-33. This brief article outlines the history of consumer involvement at the Canadian Mental Health Association. It explores the formation and development of the Consumer Participation Task Group at CMHA. "It is obvious to the members of the Consumer Participation Task Group that their work is a first step in what will be a long process. Yet, they are convinced that consumers in Canada have all the skills, knowledge, and experience necessary to build a strong network. And they know, from their first accomplishments, that the results of consumer participation will be highly worthwhile, not just for consumers, but for those of us in the mental health field, and for everyone in Canada's communities."* Pape, B. (1988). Consumer participation: From concept to reality. (Available from Canadian Mental Health Association-National, 2160 Yonge St., Toronto M4S 2Z3, [416] 484-7750). This 55-page document was written over ten years ago, when CMHA had experienced the benefits and challenges of the Consumer Participation Task Group. It takes the reader through the history of that task group within CMHA, and suggests some implication for public policy. These pertain to appointments, funding, and hiring. The author reviews how the task group achieved its goals, namely through membership, internal organizational development, funding support, organizational support, and collaborative leadership.* Pyke, J., Samuelson, G. Shepard, M. And Brown, N. (1991). Shaping mental health services. The Canadian Nurse, p. 17-19. In this article the authors suggest that mental health professionals must encourage and actively facilitate the involvement of consumer/survivors and family members in all aspects of mental health planning and evaluation. This implies a different working relationship between professionals and consumers/survivors and family members Three models for consumer participation are outlined: consumer control (where consumers have the authority to make binding decisions on all issues within the mandate of the organization) coalitions or partnerships (involving consumers and service providers working towards a common goal, benefiting from each others' experiences and resources) participation (ensuring that consumer voices are heard on multiples issues and levels). Attitudinal, cognitive and instrumental barriers to consumer and family involvement are discussed.* Ridgeway, P. (1988). The voice of consumers in mental health systems. A call for change: A literature review. (Available from the Center for Community Change Though Housing and Support, Trinity College of Vermont, 208 Colchester Ave., Burlington, VT 05401, [802] 658- 0000). This 26-page review provides an overview of the professional literature on consumer participation. Included are references which give concrete suggestions for consumer involvement and a brief summary of strategies. Trainor, J. & Church, K. (1989). User involvement in mental health planning. ( Available from the Community Support and Research Unit, Queen Street Mental Health Centre, 1001 Queen St. W., Toronto, Ontario M6J 1H4, [416] 535-8501 x. 2068). This 23-page paper was written by the Alliance Development Committee for District Health Councils in Ontario when they were in the early stages of preparing to implement the "Graham Report". It provides a rationale and specific strategies for building user involvement. Stages described include forming a reference group, "mapping" your community and organizing an initial meeting. It points out the difficulties of being unable to find "users" to participate, or having many competing viewpoints among "users. It suggest some logistical strategies: 1) Hold meetings when users can attend; 2) Use a less formal style and less jargon; 3) Pay users for their time and expenses; and 4) Chair meetings in a user-sensitive manner. The planning process should involve users from the outset, and be structured in a "user friendly" way.* Wilson, S. (1996). Consumer empowerment in the mental health field. Canadian Journal of Community Mental Health, 15 (2), 69-85. This article is an overview of consumer empowerment and involvement in the mental health field, focusing on recent Canadian developments as described in the formal literature. Traditional approaches to treatment and support for persons with serious mental health problems are described, followed by a discussion of the principles of consumer empowerment and involvement. Three categories of involvement and their associated benefits and barriers are described, together with methods for overcoming them.* World Health Association. (1993). Consumer participation manual. (Available from W.H.O., #2 U.N. Plaza, 9th Floor, N.Y.C. 10017, [212] 963-4388). This 9-page document is an introduction to the subject of consumer/survivor involvement in the mental health system. Two reasons why consumers should be actively involved are identified: 1) Because Canadian society is based on certain assumptions about the rights of individuals, consumers have the right to be involved; and 2) consumers can help to create a better mental health care system, as they feel more keenly than anyone the effects of shortcoming in policies and programs. The difficulty of realizing these ideals is acknowledged. Barriers include the lack of a well-developed rationale for the inclusion of consumers in the planning, delivery, and evaluation process, and structural/motivational factors that favor the mental health professional and disadvantage the consumers. Specific problems and possible solutions are suggested.* World Health Association. (1990). Report of a World Health Organization (WHO) meeting on consumer involvement in mental health services. Psychosocial Rehabilitation Journal, 14 (1), 13-20. This article provides a global perspective on such topics as the need for empowerment, the right to representation, access to medical records, and cultural differences in developing countries. Recommendations for enhancing consumer involvement in the design and evaluation of services include: publication and wide-spread dissemination of documents, development of a multi-site research and service demonstration network, and ensuring that government legislation and administrative policy includes consumers and family input.* LEADERSHIP, PARTICIPATION AND ADVISORY BOARDS: TECHNICAL ASSISTANCE AND SKILLS DEVELOPMENT Anderson, D. & Deegan, P. (1997). Overcoming Barriers to effective consumer participation on boards. (Available from the National Empowerment Center, 20 Ballard Road, Lawrence, MA 01843-1018, 1- [800]-POWER-2U ) . "This book is intended for anyone who is charged with the responsibility for setting up and running boards and committees that include people with psychiatric disabilities. It is filled with proven, concrete steps and actions that you can take to achieve the goal of insuring effective consumer/survivor participation...With the proper skill development and support, anyone who is interested in participating can learn to do so and will make a valuable contribution if given the chance. This illustrated book outlines seven barriers which can interfere with the effective board and committee work. After each barrier is described, specific 'hands on' strategies for skill building and support are discussed. These strategies for overcoming barriers are then followed with concrete examples from the work experience for the authors. A chapter addressing frequently asked questions closes the text." Anderson, D. & Deegan, P. (1994). Overcoming Barriers to effective consumer/survivor participation on boards and committees. (Available from the National Empowerment Center, 20 Ballard Road, Lawrence, MA 01843-1018, 1-[800]-POWER-2U ). This 4 page document outlines 6 barriers to consumer participation (lack of accommodation, access, poor communication, the tendency to pathologize consumer/survivor behavior, tokenism and lack of skills training and technical assistance) and provides specific strategies for support in overcoming these barriers. Baker, K. (1994). What does significant involvement really mean? Structural and practical assistance for building partnerships with consumer/survivors and families. Workshop proceedings. (Available from Canadian Mental Health Association-Ontario, 180 Dudas St. W., Ste. 2301, Toronto, Ontario M5G 1Z8, [416] 977-5580). This workshop provided CMHA delegates with the opportunity to share information and learn about practical resources to assist CMHA branch offices in developing successful partnerships between consumers, survivors, family members, and service providers. Addresses the fact that there is much rhetoric about consumer involvement, but little practice. Contains transcripts of workshop presentations, question and answer periods, small group discussion, and recommendations.* Canadian Mental Health Association Consumer Development Project. (1996). Board and Committee Survival Handbook. (Available from CMHA Consumer Development Project Team, 1C-1864 Spall Rd.., Kelowna, British Columbia V1Y 4R1, [250] 868-9611). This book is designed for consumers to act as a guide to participating on boards and committees. Topics of the book include: barriers to getting involved, strategies to overcome these barriers, levels of possible involvement, an outline of mental health services and systems, an explanation of different kinds of boards, how boards and committees work, and meeting agenda. A glossary of terms and "12 steps to mental illness recovery" are also included. Canadian Mental Health Association - Nova Scotia Division. (1996). Consumer-led education and action for reform: A three-part project involving mental health consumers in health system reform. (Available from CMHA-Nova Scotia Division, 63 King St., Dartmouth, Nova Scotia B2Y 2R7, [902] 466-6600). This document provides an overview of a project to increase the involvement of mental health consumers and dispel myths about the limited capacity of consumers to participate in health policy reform. The project was broken into three phases: I) Capturing consumers' comments regarding wellness, recovery and health reform through focus groups; II) forming workshops made up of different mental health stakeholders to disseminate and work with information gathered from Phase I; III) establishing and implementing a strategy for sustaining the participation of consumers and communities in mental health reform. This document provides a summary of each phase, as well as an extensive evaluation of the entire project (prepared by Maureen Summers). Carver, J. (1997). Boards that Make a Difference. San Francisco: Joey- Bass. This 241-page book focuses on boards of non-profit and public organizations and how they can be developed to be "forward-thinking, value-oriented and leading." The author begins by outlining the predictable difficulties of boards and then argues for a revision of goals and approaches to policy making. Instead of using "traditional categories of board policies borrowed from administration", he develops "four new categories tailored for the governing role" (Ends, Executive Limitations, Board-Executive Relationship, and Board Process). After examining common traps in policy making, the author then describes the characteristics of effective policy making to provide greater control and avoid traditional practices which typically cripple boards. The authors goes into great detail describing the four categories of board policy, all of which "engage the board in governing outcomes rather than activities and resolve such issues as mission, priorities, and target recipient groups." The author then discusses ways to keep boards focused by developing "structured discipline and agendas into the long view." Finally, he discusses the importance maintaining a vision and including other aspects of strategic leadership. Capponi, P. (1989). Board sensitization package. (Available from Community Resources Consultants of Toronto, 120 Eglington Ave. E. Ste. 800, Toronto, Ontario M4P 1E2, [416] 482-4103). In this 20-page resource document the author draws on both her personal and professional experiences to offer tips for partnerships between professionals and consumers/survivors on boards and committees. The goal is to move beyond defensiveness to new awareness by applying the same standards of non-racist, non-prejudicial assumptions, actions, and speech to consumer/survivors as would be applied to any other minority group. The processes used by the board should be agreed upon by professionals and consumers, thereby facilitating empowerment. Capponi offers a formula for valid partnerships, based on building trust, exercising leadership which recognizes the power differential between service providers and consumers, a change in roles for service providers, and moving beyond tokenism by involving significant numbers of consumers/survivors.* Cassin, C. & members of Toronto Psychiatric Survivors. (1991). A proposed policy on survivor involvement in the mental health system. Unpublished manuscript: Toronto Psychiatric Survivors. This paper suggests some concrete ways that survivors can become more involved in the mental health system. One section deals with independent survivor organizations, and the other discusses involvement in mainstream mental health services. The author outlines reasons for supporting survivor organizations, the areas of survivor involvement and/or survivor activities, and the role of provincial support.* Centifanti, J.B. (1988). Systems Advocacy. (Available from the National Mental Health Consumer's Self-Help Clearinghouse, 1211 Chestnut Street, Suite 1000, Philadelphia, PA 19107, 1-[800]-553-4539). With the goal of creating a better mental health system by involving consumer advocates, this six page guide discusses the "who and what" of advocacy (including legislative and legal advocacy). Church, K. (1994). Working together across differences: an invitational symposium and how it grew. (Available from Community Resources Consultants of Toronto, 120 Eglington Ave. E. Ste. 800, Toronto, Ontario M4P 1E2, [416] 482-4103). This document is the third in the series produced by the Psychiatric Survivor Leadership Facilitation Program, the first two documents being Re/membering Ourselves (1991) and Moving Over (1992). This document discusses the planning process and results of an unusual conference made up of consumers/survivors and professionals from across the province to speak openly about the dilemmas and rewards of partnership experiences. Church, K. (1992). Moving over: A commentary on power sharing. (Available from Community Resources Consultants of Toronto, 120 Eglington Ave. E. Ste. 800, Toronto, Ontario M4P 1E2, [416] 482- 4103). This 38 page document was written for the Psychiatric Survivor Leadership Facilitation Program It discusses how mental health service providers can engage in "partnership" relationships with psychiatric survivors, and describes some of the important principles and issues from the point of view of survivors. Included is a list of published resource materials.* Church, K. & Capponi, P. (1991, September). Re/membering ourselves: A resource book on psychiatric survivor leadership facilitation. (Available from Community Resources Consultants of Toronto, 120 Eglington Ave. E. Ste. 800, Toronto, Ontario M4P 1E2, [416] 482- 4103). This 28 page document, written for the Psychiatric Survivor Leadership Facilitation Program, discusses empowerment, leadership and how psychiatric survivors can organize and work with others for positive change. The authors also reflects on the experiences, assumptions, dilemmas and solutions which professionals and survivors share and do not share.* Consumer and Family Participation Workgroup of the Simcoe County District Health Council, CMHA. (1996, February). Enhancing Consumer and Family Involvement in Mental Health Service Planning and Delivery. This report summarizes the efforts of a participation work group to: conduct a review of consumer/survivor participation in mental health agencies in Simcoe County, review existing models of planned participation in mental health reform implementation, and to recommend actions to achieve greater participation. The participation work group surveyed local mental health agencies, reviewed relevant literature and held focus groups on the subject of increasing consumer/family involvement. This report presents the groups findings and provides numerous recommendations for increased involvement under the subjects of: involvement at the individual service level, board and committee involvement, effective chairing of committees, using other strategies, remuneration for incurred expenses, payment for participation on committee and boards, dual relationship problems, enhancing employment opportunities for consumers, and potential difficulties in employing consumers in mental health settings. Curtis, L.C. & Montague, W., McCabe, S., Caron, D. & Harp, H. (Eds.). (1991). Strategies for increasing and supporting consumer involvement in mental health policy development, planning, management, and service delivery. (Available from the Center for Community Change Though Housing and Support, Trinity College of Vermont, 208 Colchester Ave., Burlington, VT 05401, [802] 658-0000). This 6-page document identifies a number of practical strategies for how agencies and service systems can encourage and support ex- patients/consumers and family members to play an active role in the determination of mental health policy, service delivery, and training activities. Fawcett, S.B., Seekins, T., Whang, P.L., Muiu, C., and de Balcazar, Y.S. (1982). Involving consumers in decision-making. Social Policy, 13(2), 36-41. "The purpose of this article is to describe the Concerns Report Method, a systematic, data-based process for identifying the strengths and problems of human-service institutions and communities--and ways to improve them--from the perspective of citizen-clients... Unlike traditional survey research approaches, it involves consumers in selecting the issues to be studied and in interpreting the results. In addition, the Concerns Report Method describes information about problems and strengths to decision-makers, and offers concrete proposals to solve the problems and preserve strengths that may be at risk." Hutchison, P., Lord, J. & Osborne-Way, L. (1986). Participating with people who have directly experienced the mental health system. (Available from the Canadian Mental Health Association-National, 2160 Yonge St., Toronto M4S 2Z3, [416] 484-7750). Part of the Canadian Mental Health Association's Building a Framework for Support series, this 53 page document was designed to assist service providers in analyzing current levels of consumer participation, determine barriers and develop effective strategies to overcome these barriers. This document provides strategies for increasing participation on both and individual level and a service/program level. In addition, the authors discuss the linking participation with self-help. Kadis, S. & Holmes, P.C. (1996). Coming aboard: A self-help guide for consumers who are interested in joining nonprofit mental health boards or advisory councils. (Available from On Our Own of Maryland, Inc., 1521 S. Edgewood Street, Suite C, Baltimore, Maryland, 21227, 1- [800]-704-0264) "The purpose of this manual is to give consumers some tools for taking positive action to become members of boards of directors and advisory councils." This manual begins by exploring the definitions and primary characteristics of nonprofit organizations, boards of directors, and advisory councils. The authors then describe the preparatory steps to joining a board or council: assessing one's own strengths and abilities, researching the organization, applying for a position, and interviewing. How to avoid the consumer trap of tokenism is explored, and then helpful skills for board and council members are briefly provided. The manual then outlines a "six-year plan for leadership" to assist participants increase their level of responsibility over time. This outline provides reasonable expectations for a board member's gradual, step-by- step development of their leadership presence. The manual goes on to provide outlines of mental health organizations in Maryland and a typical nonprofit organization, and then examples of different Maryland councils and boards on which consumers may serve is given. The manual also provides a bibliography of related materials and a glossary of terms in the appendix. Lefever, J. (1991). Network Simcoe: An experiment in partnership. Barrie: CMHA/ Simcoe County Branch Outlines the process of facilitating consumer/survivor involvement in mental health service planning for one particular district of Ontario. Includes some real "nuts and bolts" issues such as how to begin, identifying and recruiting both consumer-participants and service provider-participants, and supporting their involvement. Mistakes made by the group, and feedback from consumer-participants are discussed.* National Mental Health Consumer's Self -Help Clearinghouse. (1996). Making our voices heard: Consumer Representation on Decision- Making Committees. (Available from the National Mental Health Consumer's Self-Help Clearinghouse, 1211 Chestnut Street, Suite 1000, Philadelphia, PA 19107, 1-[800]-553-4539). "No longer will we be silent." This 4 page document discusses where and how consumers can get involved, what is tokenism, and compares cooperation vs. Coaptation. Bibliography is included. Nugent, J. (1996). Consumers on Board: The Effective Participation of Consumers on Boards of Directors. (Available from the Community Training and Consultation Services, United Way of Peel Region, 151 City Center Drive, Suite 800, Mississauga, Ontario, L5B 1M7 [905] 896-7335. This manual begins by outlining the theoretical background of the issues of organizational change and power sharing, and the question of why consumers should be involved? It then provides a step-by-step guide (including worksheets for specific activities) to ensuring effective consumer participation. After discussing the initial steps for getting started, the author suggests that one must develop a clear definition and understanding of: 1) who the consumer is; 2) the history of the agency's consumer participation; 3) and the agency's current status. The author goes on to provide specific information on developing and managing orientation, training, resources, a "buddy system", meeting logistics and evaluation of the board. The sponsoring agency (Training and Consulting Services, United Way of Peel Region) also provides a phone number for further consultation. Otto, D. (1990). Unlocking the System: Consumer Participation Strategies in Mental Health. Thornbury, Australia: Victorian Mental Illness Awareness Council (VMIAC). This booklet was designed to act as a resource for consumers, service providers and others wishing to increase consumer rights and participation. The implementation of participation is presented as a process of community development rather than a standard model. Material is presented under the following headings: 1) Learning from experience (an outline of developments in Australia affecting consumer participation), 2) Changing the framework (examining existing beliefs and ideas in mental health systems and it could be changed to encourage consumer participation), 3) Understanding decision-making structures, 4) Identifying the barriers (a compilation of consumer and professional views regarding what creates barriers to consumer participation), 5) Devising strategies for change, and 6) Dealing with structural inequalities (examining power differentials between consumers and strategies to overcome these). A list of other resources (including audio and video) available in Australia and New Zealand is also provided. Penny, D. (1993). Preliminary thoughts on best practices for establishing state offices of consumer/ex-patient affairs. (Available from the National Association of Consumer/Survivor Mental Health Administrators, c/o Joe Slack, P.O. Box 3710, Montgomery, Alabama 36109, 1-[800]-832-0952). This 8 page document, Human Resource Association of the Northeast summarizes the results of a meeting of 11 state directors of consumer/ex-patient affairs. "The meeting was convened specifically to gather and synthesize information from the directors in order to provide guidance for state mental health commissioners who are considering establishing offices of consumer/ex-patient affairs. Issues explored in this document include recruitment and retention practices, organizational issues, and the tension between the double role of bureaucrat and systems change advocate. Reville, D. & Church, K. (1990). Do the right thing* right: A brief presented to the Toronto hearings of the legislative sub-committee on community mental health services legislation. Canadian Review of Social Policy, 26, 77-81. This development of this brief was an exercise in coming to understand the barriers to survivor participation built into the consultation on community mental health services legislation sponsored by the Ontario government in 1990. It suggests that consultation which includes survivors should: address issues generated by survivors; take place in survivor-friendly environments; and be organized in survivor friendly ways. There is some discussion of what this might look like.* Rogers, J.A. How to Start a Self-Help/Advocacy Group. (Available from the National Mental Health Consumer's Self-Help Clearinghouse, 1211 Chestnut Street, Suite 1000, Philadelphia, PA 19107, 1-[800]-553- 4539). This document is a basic guide to why and how to set up your first meeting, concerns for your second, and more. A bibliography of further readings is included. Scott, P., Pomeroy, E. & Pape, B. (1995). Tools for consumer participation. (Available from the Canadian Mental Health Association- National, 2160 Yonge St., Toronto M4S 2Z3, [416] 484-7750). This document is a resource package for facilitating consumer participation and conducting workshops on the subject. The document consists of three sections: 1) Tips and strategies for building consumer- friendly agencies, boards and committees; 2) A presentation kit comprised of overheads, workshop agendas, recommendations for videos, and presentation ideas that have worked for others; and 3) A resource section with other relevant material. Seekins, T., Balcazar, F., & Fawcett, S. (1993). Consumer involvement in community advocacy organizations: Volume I - Monitoring events and reporting issues. (Available from Mountain States Group, 1607 W. Jefferson ST., Boise, ID 83702, [208]-336-0880). This document is one of four volumes originally created for the Leadership Academy of Idaho. The four volumes of the manual are designed to help consumer organizations and their members take more responsibility in contributing to community improvement and cooperating in community planning. Each volume explores a broad range of strategies using easily understood guidelines and instructions. "Part I of [volume I] introduces readers to consumer involvement. Lesson 1 defines consumer involvement and explains the different forms it can take. Lesson 2 presents some organizational considerations and general recommendations regarding legal responsibilities for advocacy organizations. Lesson 3 offers an etiquette course that can be extremely important for the ultimate success of any consumer endeavor. Part II describes how individuals can monitor events and report issues to their group effectively. Lesson 4 describes several information sources that can be used in various ways to identify issues. Lesson 5 discusses eight types of issues that are highly relevant to consumer organizations. These issue types help organize the options for appropriate action. Lesson 6 discusses how to select relevant issues to report to the group. Lesson 7 explains one method to clarify what you would like the group to accomplish on an issue and also introduces the Project Planning Guide. Finally, Lesson 8 tells how to report issues in such a way that you peak the interest of the group. Each lesson is followed by an exercise." Seekins, T., Balcazar, F., & Fawcett, S. (1993). Consumer involvement in community advocacy organizations: Volume II - Conducting effective meetings. (Available from Mountain States Group, 1607 W. Jefferson ST., Boise, ID 83702, [208]-336-0880). This document is one of four volumes originally created for the Leadership Academy of Idaho. The four volumes of the manual are designed to help consumer organizations and their members take more responsibility in contributing to community improvement and cooperating in community planning. Each volume explores a broad range of strategies using easily understood guidelines and instructions. Volume II (lessons 9-14) describes "how the group discussion leader can chair effective meetings. Lesson 9 describes how to form an issue agenda to get the meeting started. Lessons 10 through 14 show the reader effective ways to open meetings, lead discussions, guide systematic planning, take votes, and close meetings. Volume II also provides instructions for the group secretary on taking the minutes of group meetings." Seekins, T. , Balcazar, F., & Fawcett, S. (1993). Consumer involvement in advocacy organizations: Volume III - Project planning guide mental health. (Available from Mountain States Group, 1607 W. Jefferson ST., Boise, ID 83702 [208]-336-0880). This document is one of four volumes originally created for the Leadership Academy of Idaho. The four volumes of the manual are designed to help consumer organizations and their members take more responsibility in contributing to community improvement and cooperating in community planning. Each volume explores a broad range of strategies using easily understood guidelines and instructions. "Volume III presents the Project Planning Guide. The Guide lists a sequence of 35 possible actions for each type of issue and goal. The work involved in each action, its goal, resources required for taking action, and possible costs and benefits are specified. The INDEX permits a consumer group to consider a full range of legitimate responses for achieving a variety of goals. It is intended to balance rational planning with effective citizen action and protect the credibility of its users." Seekins, T. & Balcazar, F. (1993). Consumer involvement in advocacy organizations: Volume IV - A Manual for Proctors. (Available from Mountain States Group, 1607 W. Jefferson ST., Boise, ID 83702 [208]-336-0880). This document is one of four volumes originally created for the Leadership Academy of Idaho. The four volumes of the manual are designed to help consumer organizations and their members take more responsibility in contributing to community improvement and cooperating in community planning. Each volume explores a broad range of strategies using easily understood guidelines and instructions. "Volume IV provides guidelines for proctors, peers, or instructors on how to train group members using this manual. The training package is divided into four training sessions. Evaluation questionnaires are included in the end of the manual." Seekins, T. & Fawcett, S.B. (1993). A guide for personal testimony: The art of using your personal experiences to influence policy decisions. (Available from Mountain States Group, 1607 W. Jefferson St., Boise, ID 83702, [208]336-0880). This short document, used in trainings at the Leadership Academy in Idaho, provides an easy to read, step-by-step guide to preparing and delivering personal testimony. An example of "successful testimony" is given. Seekins, T. & Fawcett, S.B. (1993). A guide to writing letters to public officials: Contributing to important decisions affecting you and others. (Available from Mountain States Group, 1607 W. Jefferson St., Boise, ID 83702, [208] 336-0880). This short document, used in trainings at the Leadership Academy in Idaho, provides an easy to read, step-by-step guide to preparing and writing a letter to public officials. The importance of expressing one's opinion to public officials is discussed, and an example of a letter supporting a proposed policy change is given. Seekins, T. & Fawcett, S.B. (1993). A guide to writing letters to the editor: Expressing your opinion to the public effectively. (Available from Mountain States Group, 1607 W. Jefferson St., Boise, ID 83702, [208] 336-0880). This short document, used in trainings at the Leadership Academy in Idaho, provides an easy to read, step-by-step guide to preparing and writing a letter to the editor. The importance of expressing one's opinion is discussed, and an example of a letter supporting a proposed program is given. Shimrat, I. & Black, P. (1993). Taking Power: Doing a Newsletter and Strategic Planning. (Available from the Gerstein Center, 100 Charles St. East, Toronto, Ontario M4Y 1V3, [416] 929-0149). This 17 page document, prepared by the Leadership Facilitation Program, outlines the general steps to creating a newsletter and strategic planning. In the first half of the document the authors address the benefits and importance of doing a newsletter, how to set up a working group, and the actual drafting and production of a newsletter. The authors go on to outline the development, implementation, and evaluation of a "work plan" used in strategic planning. Smith, M.K. & Ford, J. (1986). Client involvement: Practical advice for professionals. Psychosocial Rehabilitation, 9(3), 25-34. Client involvement in the mental health system can be beneficial both to clients/consumers and mental health professionals. This paper presents practical advice to professionals who have a commitment to the concept of client involvement and wish to cultivate and use consumer input in their professional endeavors. Valentine, M.B. & Capponi, P. (1989). Mental health consumer participation on boards and committees: Barriers and strategies. Canada's Mental Health, 37 (2), 8-12. Part of a special issue of Canada's Mental Health on self-help and consumer participation, this article provides an overview of factors related to the participation of consumers of mental health services on boards and committees. Six primary barriers to effective consumer participation are addressed: in congruency between stated values and actual practice, tokenism, lack of representativeness, role strain, poor communication and economic factors. Strategies are proposed to increase the potential for effective implementation of consumer participation. The article concludes with a broad statement affirming interdependence and the potential for increasing the effectiveness of boards and committees and exerting a positive influence on the system. Williams, Xenia (1994). Reasonable Accommodations for People with Psychiatric Disabilities on Governing Boards and Advisory Councils of Protection and Advocacy Systems. (Available from the Center for Community Change Though Housing and Support, Trinity College of Vermont, 208 Colchester Ave., Burlington, VT 05401, [802] 658-0000). This 5 page document, presented at the annual conference on the National Association of Protection and Advocacy Systems in Vermont, provides general explanations and practical accommodation concerning the following topics: medications and their side effects; "funny mental stuff and/or reaction to psychiatric oppression" (how to respond to behaviors which could be the result of either mental illness or psychiatric oppression); making accommodations for members with low incomes; and learned helplessness and poor self-esteem. Wilson, S.F., Mahler, J. & Tanzman, B.H. (1990). Consumer and Ex- Patient Roles in Supported Housing Services: A Technical Assistance Report. (Available from the Center for Community Change Though Housing and Support, Trinity College of Vermont, 208 Colchester Ave., Burlington, VT 05401, [802] 658-0000). This 100 page monograph summarizes information obtained from over one hundred professionally operated supported housing organizations and thirteen consumer-operated organizations across the country about the direct involvement of consumers/ex-patients in governance and service delivery. It includes an overview of the various roles held by consumers/ex-patients in these organizations, descriptions of the organizations that have consumer/ex-patient staff, the reported benefits of consumer/ex-patient staff, issues related to employing consumers/ex- patients, and suggested strategies for addressing these issues.* RESEARCH Clapper, C.R, Hess, R.E., & Hoekstra, K. (1995). Empowerment effects of teaching leadership skills to adults with a severe mental illness and their families. Draft submitted for publication. (Available from Robert Hess, William M. Mercer, Incorporated, 2390 East Camelback Road, Suite 240, Phoenix, AZ 85016). "As consumers become proficient with advocacy skills they are better able to impact the planning and provision of mental health and support services at the state and local levels. A Leadership Academy was founded in Idaho in 1992 to teach the basic skills necessary to train adults with a mental illness and family members, including Native Americans, to be effective leaders in grassroots advocacy organizations. Participants learned to identify issues and develop and implement action plans to address those issues within the context of their local communities. While the first three trainings were facilitated by professional instructors, the last two were led by consumer and family member graduates. In the course of five Academy sessions in three years, 160 consumers and family members graduated from the Leadership Academy. In a 27 month period, Academy graduates took 1,345 action steps to address issues of concern, with 400 outcomes." Srebnick, D., Robinson, M. & Tanzman, B. (1990). Participation of mental health consumers in research: Empowerment in Practice. (Poster session presented at the American Psychological Association Convention, Boston, MA). (Available from the Center for Community Change Though Housing and Support, Trinity College of Vermont, 208 Colchester Ave., Burlington, VT 05401, [802] 658-0000). This 11 page document summarizes key dimensions of participatory research, i.e. involving consumers/ex-patients in all aspects of the research process. It describes the variety of roles in the research process, the rationale for involving consumers, the advantages of consumer involvement, barriers to involvement, and examples of how barriers can be addressed. The authors contend that consumer involvement is beneficial at many levels: to the research informants, to consumer research assistants, to researchers, to the quality of the research and the findings, to the process of instrument development, and to the mental health system as a whole. Vandergang, A.J. (1996). Consumer/survivor participation in the operation of community mental health agencies and programs in Metro Toronto: Input or Impact? Canadian Journal of Community Mental Health, 15(2), 153-170. The purpose of this study was to obtain an overview of consumer/survivor participation in the operation of mental health agencies in Toronto. This article describes, from the viewpoint of agency executive directors, the nature and extent of consumer/survivor involvement, and the difficulties encountered in implementing it. It appears that while involvement is increasing in specific, measurable ways in many agencies, the actual impact of consumer/survivor input on agency philosophies, policies, and practices is unclear. Agency directors tend to account for this in terms of the failure of consumer/survivors to meet agency expectations. Drawing on the literature on consumer/survivor involvement, the author suggests that the more fundamental problem is the continued imbalance of power between consumer/survivors and agency staff, and the failure of agencies to create an environment conducive to meaningful consumer/survivor participation. This study found that there was a high degree of interest in receiving support to address these issues encountered in developing partnerships with consumers/survivors. PERSONAL PERSPECTIVES Cassin, C. (1993) A psychiatric survivor's challenge. In Duplessis, G., McCrea, M. & Viscoff, C. What works! Innovations in Community Mental Health and Addiction Treatment Programs. Canadian Scholars Press Inc. This 17 page document is written in the context of challenges facing community mental health programs in the post "Graham" era of mental health reforms. The challenge is to achieve creative, effective collaboration with psychiatric consumer/survivors who are willing to work at developing and reforming the mainstream mental health system. Cassin outlines six principles which must be followed if such collaboration is to be achieved. She suggests practical ways of following the principles, "in hope that all who are involved...are now willing and able to walk where they've been talking."* Church, K. (1995). Forbidden Narratives. Buffalo, NY: University of Toronto Press. "Forbidden Narratives explores overlapping layers of voices that convey the social relations of psychiatric survivor participation within a community mental health service system. Perhaps its most unique feature is that it begins with tales of the personal and professional changes which the author had gone through in relation to psychiatric survivors over the past decade...The work then shifts to stories about psychiatric survivor participation in the implementation of community mental health systems reform by the Ontario government... These stories demonstrate ways in which the knowledge/power relations of community mental health are significantly disrupted by processes which bring forward survivor knowledge repertoires. When this happens, mental health professionals and bureaucrats become unsettled; their personal as well as professional identities are called into question. The emotional expression of this "unsettlement" is an integral part of policy re/formation; the supposedly rational practices of planning also mobilize emotional investments, desires and pain. The book thus takes up the subjective dimensions of power and the disunity of state order." Deegan, P. (1991, February). How to integrate and involve consumers in all levels of the mental health system. Presentation at the Canadian Mental Health Association Ottawa-Carlton Branch, Ottawa, Ontario. Drawing from her personal experiences as a consumer/survivor of the mental health system, Deegan proposes that the reason the mental health system has failed to involve and enter in partnership with people who have been labeled a shaving a mental illness is because we have failed to see them as real people whose views and opinions are valued, respected, listened to and acted upon. To truly enter in partnership with people and overcome our "mentalism." Mentalism refers to attitudes and assumptions that stereotype people who have been labeled with a mental illness and which lump us all together and deprive us of our individuality. These attitudes imply that we are somehow less than human and that we don not want or aspire to the same rights and responsibilities as other people. Before trying to integrate consumers and survivors into the mental health system, we must understand how our mentalism has segregated them in the first place. 13 pages.* White, J.C.M. (1989). Consumer Participation: A personal journey. Canada's Mental Health, 7 (2), 2-4. One consumer shares a personal journey that enable her to participate in the Canadian Mental Health Association. Committees, boards and other groups can encourage consumer participation by accepting and supporting these individuals. Consumers bring a personal, passionate knowledge of the problems, and potential solutions. Partnerships among consumers, professionals, family members, and community leaders increases effectiveness. Consumers who choose to identify themselves and participate face financial and emotional costs. Their anger with the system is a motive to create change. People who are taking risks need practical and emotional support. Other group members can help provide safety that makes consumer participation possible.* AUDIO/VISUALS Deegan, P. (1993, October). Strategies for removing barriers to effective consumer/survivor participation on boards and committees. [Cassette recording]. (Available from the National Empowerment Center, 20 Ballard Road, Lawrence, MA) 843-1018, 1-[800]-POWER-2U). Gervain, M. (Speaker). (1996). Consumer Participation on Mental Health Boards and Committees. (Cassette recording No. 938). (Available from the National Empowerment Center, 20 Ballard Road, Lawrence, MA 01843-1018, 1-[800]-POWER-2U ). WEBSITES RELATING TO CONSUMER LEADERSHIP People Who Information Center: http://www.rainier-web.com/html/pwic.html The Madness Group: http://www.peoplewho.org/Madness http://www.peoplewho.org/Meetings/NMHABeers.htm *Taken from Consumer/Survivor Involvement: An Annotated Bibliography (1997) compiled by: Community Resources Consultants of Toronto (CRCT) 120 Eglinton Ave. E. Ste. 800 Toronto, Ontario M4P 1E2 1-416-482-4103, E-mail: crct@interlog.com