For the Crime of Being Different: Exploring Disability Rights, History, Philosophy, And Culture July 14-15, 1997 BUILDING A STRONG FOUNDATION in a Rapidly Changing Environment "FOR THE CRIME OF BEING DIFFERENT" Exploring Disability Rights, History, Philosophy, And Culture July 14-15, 1997 Portland, Maine IL NET NCIL/ILRU National Training & Technical Assistance Project copyright 1997 ILRU Program 2323 S. Shepherd, Suite 1000 Houston, TX 77019 713-520-0232 (V) 713-520-5136 (TTY) 713-520-5785 (fax) 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 NETWORK: NCIL/ILRU National Training and Technical Assistance Project. Developers of this TRAINING MANUAL: Steven E. Brown Laurel Richards Lillian Gonzales Brown Rose Shepard June Isaacson Kailes Gina Shore Cynthia Dresden Raymond Lin Dawn Heinsohn Anne-Marie Hughey "FOR THE CRIME OF BEING DIFFERENT" EXPLORING DISABILITY RIGHTS, HISTORY, PHILOSOPHY, AND CULTURE TABLE OF CONTENTS Agenda List of Trainers and IL NET Staff About the Trainers Steven E. Brown Lillian Gonzales Brown June Isaacson Kailes About NCIL About ILRU About the IL NET IL NET Resource Materials National Resources on Independent Living Readings for the Independent Living and Disability Rights Movement Learning Objectives Acknowledgments Excerpt from "Out of Isolation" Frank Moore "Tell Your Story" Steven E. Brown Historical Perceptions of People with Disabilities in the United States Scenario One "Mirror, Mirror On the Wall" Scenario Two "Say What You Mean and Mean What You Say" Scenario Three "What's My Line?" Scenario Four "It's Not My Problem" Scenario Five "Now, Play Nice . . ." Scenario Six "Home Sweet Home" Scenario Seven "Oh, You're So Sensitive" "The Fishing is Free" Jane Field "Disabled People Do It!" Jane Field. "Martyrs" Steven E. Brown "Sonata in the Lingering Keys of Life" Steven E. Brown "Where Is...?" Steven E. Brown "I've Gone Too Long (Without Democracy)" Frederick M. Markham and Ramsey Kearney "For the Crime of Being Different" Jeff Moyer "In Search of Disability Culture" Miriam Braunstein "We Are Who We Are...So Who Are We?" Steven E. Brown "Night Screams" Steven E. Brown "Pain Tablets" Steven E. Brown "A Celebration of Diversity: An Introductory, Annotated Bibliography about Disability Culture" Steven E. Brown Evaluation "FOR THE CRIME OF BEING DIFFERENT" EXPLORING DISABILITY RIGHTS, HISTORY, PHILOSOPHY, AND CULTURE AGENDA Monday, July 14, 1997 8:30-9:00 Continental breakfast 9:00-9:30 Welcome and introduction 9:30-10:15 Perceptions of disability, or from deviant invalids to freedom fighters. 10:15-10:30 Break 10:30-10:35 "The Fishing is Free" 10:35-10:50 Group introductions: Who's here, and where do you come from? 10:50-12:00 "I Never Think of You as Disabled" 12:00-1:30 Lunch 1:30-2:00 "No Apologies" 2:00-2:45 Refusing to sit...and wait...and wait..at the bus stop: The emergence of the disability rights movement. 2:45-3:00 Break 3:00-3:05 "Disabled People Do It" 3:05-4:55 Who decided to label us 99-pound weaklings?--power, politics, and strength. 4:55-5:00 "Martyrs" Tuesday, July 15, 1997 8:30-9:00 Continental breakfast 9:00-9:30 Check-in exercise "Sonata in the Lingering Keys of Life" "Where Is?" 9:30-10:15 CILs--The new bureaucracy: Are we the problem or the solution? A media moment: clips from videos We Won't Go Away; Disabled Women: Vision and Voices; and Storm Reading 10:15-10:30 Break 10:30-10:35 "For the Crime of Being Different" 10:35-12:00 How CILs look today--are they OK? 12:00-1:30 Lunch 1:30-2:45 How close is your CIL to meeting your ideal? 2:45-3:00 Break 3:00-3:05 "I've Gone Too Long (Without Democracy)" 3:05-4:30 Poster kids no more: integrating culture into CILs. 4:30-5:00 Wrap-up and evaluation LIST OF TRAINERS AND IL NET STAFF TRAINERS Steven E. Brown Institute on Disability Culture 2260 Sunrise Point Road Las Cruces, NM 88011 (505) 522-5225 (v/TTY/fax) DISCULTURE@aol.com Lillian Gonzales Brown Institute on Disability Culture 2260 Sunrise Point Road Las Cruces, NM 88011 (505) 522-5225 (v/TTY/fax) DISCULTURE@aol.com June Isaacson Kailes 6201 Ocean Front Walk, Suite 2 Playa del rey, CA 90293 (310) 821-7080 (v); 827-0269 (fax) jkailes@tsbbs02.tnet.com jik@pacbell.com NETWORK STAFF NCIL Anne-Marie Hughey Raymond Lin 2111 Wilson Blvd., Suite 405 Arlington, VA 22201 (703) 525-3406 (v), 525-3407 (TTY) 525-3409 (fax) ncil@tsbbs02.tnet.com June Isaacson Kailes (see above) Roland Sykes President, Greater Independence through Management Programs, Inc. 6256 Ramblewood Drive Dayton, OH 45424 (937) 327-8360 (v) rsykes@tsbbs02.tnet.com ILRU Laurel Richards Bob Michaels Cynthia Dresden Dawn Heinsohn Laurie Gerken Redd 2323 S. Shepherd, Suite 1000 Houston, TX 77019 (713) 520-0232 (v), 520-5136 (TTY) 520-5785 (fax) ilru@tsbbs02.tnet.com ABOUT THE TRAINERS Steven E. Brown, founder of the Institute on Disability Culture, is an expert on independent living history and philosophy and is a recognized leader of the disability culture movement. After earning his doctorate in history from the University of Oklahoma at Norman in 1981, Steve supervised peer support and skills training programs, edited the newsletter, and participated in community organization at Progressive Independence CIL in Norman, Oklahoma. Steve then joined the staff of the Oklahoma Office on Handicapped Concerns, where he served in both the client assistance program and as a disability programs specialist. During this time, he was also president of the Oklahoma Coalition of Citizens with Disabilities, and participated on many other local boards and commissions. In 1987, Steve returned to Progressive Independence as director of the center. He facilitated a spin-off to a consumer-controlled board, brought the center into the local, regional, and national limelight, and stabilized funding resources during his three-year tenure. Following his directorship, Steve became training director for the Research and Training Center on Public Policy in Independent Living at the World Institute on Disability (WID) in Oakland, California. For the next three years, he was immersed in training activities, public policy initiatives, and a heightening awareness of a global disability rights movement. In 1993, Steve received a Mary E. Switzer Distinguished Rehabilitation Research Fellowship to investigate disability culture, the first such award from the National Institute on Disability Rehabilitation and Research (NIDRR) of the Department of Education. Most recently, Steve received a second Switzer award, in October 1996, to conduct research for a book about independent living pioneer Ed Roberts. Lillian Gonzales Brown, founder of the Institute on Disability Culture, joined the independent living movement in the 1970s at the world's first independent living center--the Center for Independent Living (CIL) in Berkeley, California. A member of the team which designed and implemented the country's original independent living curriculum, she also worked in a variety of direct services areas such as peer support, sexuality, independent living skills training, and goal planning. During her tenure at CIL in Berkeley, and later at the World Institute on Disability, Lillian also developed individualized peer support and independent living skills training programs for international students and visitors. Having gained international recognition for her expertise in disability rights issues, she has conducted trainings in Europe, Asia, Latin America, New Zealand, Japan, and Scandinavia. Other work includes early development and implementation of sexuality curricula which advocated for rights to information, relationships and privacy for people with mental retardation; integrating a disability focus into staff trainings and community education with Planned Parenthood; and work with suicide prevention programs, crisis intervention and counselor training. Most recently, Lillian has advocated for disability rights and accessibility throughout her community as a member of the newly-formed Disability Action Committee. June Isaacson Kailes is active as a disability rights advocate and project developer in the independent living movement. June consults for and trains businesses, universities, government entities, centers for independent living, and other not-for-profit organizations. Prior to establishing a full-time consulting practice in 1989, June worked at 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. As a disability policy consultant, June writes, trains, and consults in the areas of implementing the Americans with Disabilities Act; advocacy training and skills building (leadership development); health, wellness, and aging with disability; developing and analyzing public policy; strategic planning; publication and grant writing; incorporating universal design principles into existing and new environments and products; targeting the disability market; managing, evaluating, and fund raising for centers for independent living and other organizations; planning barrier free meetings; telecommunications (including using the Internet effectively); and disaster preparedness for people with disabilities. 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. 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 THE IL NET The IL NET is a collaboration of the National Council on Independent Living (NCIL), the Independent Living Research Utilization (ILRU) Program, and organizations and individuals involved in independent living nationwide. Now entering its second three-year funding cycle, the IL NET is building on its strong foundation to address the spectrum of needs expressed by centers for independent living and statewide IL councils. The mission of the IL NET is to provide training and technical assistance on a variety of issues central to independent living today--understanding the Rehab Act, what the statewide independent living council is and how it can operate most effectively, management issues for centers for independent living, systems advocacy, computer networking, and others. Training activities are conducted conference-style, via long-distance communication, through widely disseminated print and audio materials, and through the promotion of a strong national network of centers and individuals in the independent living field. IL NET goals include: conducting training on provisions of the Rehabilitation Act, implications for the upcoming reauthorization of the Act, and on independent living center operations nationwide; providing quality technical assistance through support and expansion of a network of individuals around the country who have expertise in various aspects of center operations and Title VII of the Rehab Act; identifying, adapting, and/or developing resource materials to support training and technical assistance activities related to the Rehab Act, center operations, and resource development; using computer networks to support training, technical assistance, and dissemination activities and promoting network development and information sharing among centers and other organizations involved in independent living; exploring the use of distance learning and other innovative technologies in addressing the information, training, and technical assistance needs of the field; fostering inclusion in the independent living field of people from various cultural and disability groups and geographic areas through activities carried out with NCIL's Multicultural Committee and the Association of Programs for Rural Independent Living (APRIL); and designing curriculum and materials to support leadership development efforts that will carry the independent living movement into the future. IL NET STAFF The IL NET is managed by a directorate consisting of Anne-Marie Hughey of NCIL; June Isaacson Kailes, disability policy consultant; and Bob Michaels and Laurel Richards of ILRU. Principal responsibility for curriculum development and training is shared by Kailes and Michaels; logistical coordination by NCIL; materials development and technical assistance coordination by ILRU; and responsibility for information dissemination is shared between NCIL and ILRU. The IL NET also works very closely with individuals and organizations in the field, particularly Roland Sykes of DIMENET, in fostering more effective computerized networking among centers. In addition, individuals with expertise on Title VII of the Rehab Act and on center operations will be involved throughout training and technical assistance activities. IL NET training activities are also supported by research information, databases, and other resources that result from initiatives at the RTC on Independent Living Center Management at ILRU. TRAINING ACTIVITIES In 1994, RSA established a national training and technical assistance project to address specific needs of independent living centers and the newly-funded statewide IL councils. During the first year, the IL NETWORK, as it was first called, conducted training programs in each of the ten federal regions of the country as well as several efforts co-sponsored with other organizations such as regional RCEPs. In all, these programs were attended by nearly 1,200 people from CILs, SILCs, and consumer groups. Year one training activities focused largely on the amended Rehab Act and its implications for independent living centers and statewide independent living councils. Issues related to center operations and to use of DIMENET as a networking and technical assistance tool were covered as well. Year two training and technical assistance activities emphasized newly enacted compliance indicators for centers, critical issues related to statewide independent living councils and development of state IL plans, systems advocacy, computer networking, and a closer look at state-administered CILs in the seven "723" states. Most of these focal points were identified through training participants' input and technical assistance requests. In 1995, the IL NETWORK piloted several new and dynamic training methods--national teleconferences, customized training programs for SILCs, and three five-day training sessions designed to be both comprehensive and intensive. Hands-on training for use of DIMENET and other computer networks was also incorporated into training sessions to allow new and experienced users to receive in-person technical assistance. A total of more than 2,800 individuals attended IL NETWORK workshops and conferences during the project's second year. To build on training curricula developed during the first two years, project staff assessed participants' reactions to trainings and techniques received in 1994 and 1995, requests received for technical assistance, and priorities for future trainings as identified by centers and SILCs on the 704 Report. As a result, 1996 trainings addressed the need for more information about conducting effective systems advocacy, doing outreach to underserved populations, computer networking, developing better presentation skills, innovative management techniques, and systems for collecting and reporting center information (MIS). These topics were again presented in a variety of ways--through customized, one-on-one, distance learning, and traditional interactive styles--to nearly 3,000 people from around the country and U.S. territories. The 1997 training season will again feature programs conducted in various parts of the country, both as complete pieces and as components of collaborative regional trainings. There are also two planned national teleconferences. Training topics include leadership development, advocacy, marketing and resource development for centers, disability culture, diversity and outreach, SILC issues, and network building. TECHNICAL ASSISTANCE Requests for technical assistance, whether from center staff, board members, or others involved in independent activities, are handled through a single point of contact at ILRU. ILRU staff determine who among various partner organizations and individuals are the most qualified to respond to the request, then provide referral to one or more technical assistants who may be ILRU staff, NCIL staff or board members, or other members of the project's technical assistance network. In each project year, IL NET staff respond to over 10,000 telephone requests from the field. With the introduction of resources available through the Internet, and with growing use of e-mail by centers and individuals in the field, an increasing number of technical assistance requests have been received and provided electronically. Many requests come from visitors to the IL NET through the ILRU web site located at http://www.ilru.org. IL NET STAFF NCIL Anne-Marie Hughey Raymond Lin (703) 525-3406 (V), 525-3407 (TTY), 525-3409 (fax) ncil@tsbbs02.tnet.com ILRU Laurel Richards Bob Michaels (602) 961-0553 (V), 961-0533 (fax) Cynthia Dresden Dawn Heinsohn Laurie Gerken Redd (713) 520-0232 (V), 520-5136 (TTY), 520-5785 (fax) ilru@tsbbs02.tnet.com June Isaacson Kailes (310) 821-7080 (V), 827-0269 (fax) jkailes@tsbbs02.tnet.com Roland Sykes (937) 237-8360 (V) rsykes@tsbbs02.tnet.com IL NET SUPPORT Support for both cycles of funding for this three-year training and technical assistance project has been provided in part by the Rehabilitation Services Administration of the U.S. Department of Education, with additional support provided by NCIL, ILRU, DIMENET and other project partners. IL NET RESOURCE MATERIALS The IL NET: National Training and Technical Assistance project, a collaboration of the National Council on Independent Living (NCIL) and the Independent Living Research and Utilization (ILRU) Program, is committed to promoting a national network of centers for independent living, statewide independent living councils, and others involved in the independent living field. Through training and technical assistance activities, project staff seek to provide individuals at all levels of expertise with educational and networking opportunities. To enhance our ability to reach as wide an audience as possible, we are making many of our training materials available in the form of individual fact sheets and packets. The following is a description of resource materials concerning the Rehab Act, statewide independent living councils, state IL plans, funding, and other topics. These materials may be duplicated without acquiring permission, providing that the following credit is given to the project: "Developed as part of the IL NET: NCIL/ILRU National Training & Technical Assistance Project." All materials are available in accessible formats, including copies available to download in either WordPerfect or ASCII from DIMENET in the IL_NETWORK file area. For fact sheets about the Rehab Act, download file 'rehab1.wp' or 'rehab1.asc.' For fact sheets about SILCs, download 'silcpak1.wp' or 'silcpak1.asc.' You will also find each piece of the packets available individually. For assistance with downloading call (808) 880-5325 (v/TTY) or (513) 439-0071 (v), 439-0072 (TTY). For further information or technical assistance, contact ILRU at (713) 520-0232 (v), 520-5136 (TTY) or NCIL at (703) 525-3406 (v), 525-3407 (TTY). FACT SHEETS ABOUT THE REHAB ACT Amendments to the Rehab Act: 1986 & 1992: A Comparison--a set of charts showing changes in the Rehab Act which occurred from 1986 to 1992. Where to Get Information About the Rehabilitation Act--how to obtain copies of the Rehab Act and related background information from the government, from public records, and from DIMENET, the national computer bulletin board for independent living. Terminology Related to the Legislative and Regulatory Process--explanations of terms and concepts related to the legislative process. Key OSERS Staff--a listing of top-level staff members of the Office of Special Education and Rehabilitation Services, the Rehabilitation Services Administration, and the National Institute on Disability and Rehabilitation Research (NIDRR). FACT SHEETS ABOUT STATEWIDE INDEPENDENT LIVING COUNCILS (SILCs) Composition of Statewide IL Councils--an easily understood overview of SILC responsibilities, composition criteria, and examples of some of the problems faced by state IL councils with direct, concrete suggestions for dealing with them. Questions About SILC Governance--identifies many of the pivotal questions an organization can use to establish the bylaws with which it governs itself; covers specific questions for councils operating as private, nonprofit corporations and seeking a tax exempt status. What Every SILC Member Should Know--a checklist of basic information that each SILC member should understand in order to be an effective, voting participant of a statewide IL planning body. Prototype Job Descriptions--basic duties, authorities, and qualifications for the SILC chair, vice- chair, secretary, treasurer, and member; intended as a guideline from which to build individualized descriptions. SILC Profile Analysis--a grid designed to reveal a basic profile of any SILC by mapping characteristics and affiliations of the members; simple, easy-to-follow instructions show whether or not a council is consumer controlled according to legal mandate. SILC Membership Compliance Assessment--a checklist for determining whether or not your SILC is in compliance with the compositional guidelines outlined in section 705(b)(2) of the Rehab Act. Directory of Statewide IL Councils--a complete list of all SILCs with contact information for state chairs; current as of May 1995. AUTHORIZED USES OF FUNDS AVAILABLE TO THE STATE IL COUNCIL Authorized Uses of Title VII, Part B--this document gives an overview of the history and development of Title VII, with an emphasis on gains made in controlling how the dollars allotted to support independent living programs and services are spent. Funding Under SILC Jurisdiction--identifies funding sources available to the statewide IL council: Title VII, Parts B and C, Title I, Part C, Social Security Reimbursement Funds, and private or other sources. Funding for Title VII, Part B: Fiscal Years 1994 & 1995--exact 1995 dollar amounts allocated from this source for each state and territory. Funding for Title VII, Part C: Fiscal Year 1994--dollar amounts by state and territory showing 1994 allotments as well as post-reallotment amounts for fiscal year 1993. Revised 3/96 _______________ Developed by the IL NET: NCIL/ILRU National Training and Technical Assistance Project. Requests for technical assistance on this and other independent living subjects may be directed to the IL NET Project, c/o ILRU at (713)520-0232 (v), 520-5136 (TTY). NATIONAL RESOURCES ON INDEPENDENT LIVING Several national organizations have been established to provide technical assistance on particular concerns relevant to issues in independent living. National Council on Independent Living Founded in 1982, NCIL is a membership organization representing independent living centers and individuals with disabilities. NCIL has been instrumental in efforts to incorporate independent living philosophy in federal legislation and regulations. National headquarters are located outside Washington, D.C. at 2111 Wilson Blvd., Suite 405, Arlington, VA 22201, (703) 525-3406 (v), 525-3407 (TTY), 525-3409 (fax). Association of Programs for Rural Independent Living One of the best resources for information about rural independent living is APRIL. Established in 1986, APRIL is an association of 33 centers and other organizations and individuals across the country serving a predominantly rural constituencies. For further information, contact APRIL president Michael Mayer at the Summit Independent Living Center, 1900 Brooks Street, #120, Missoula, MT 59801, (406) 728-1630 (v/TTY), or Linda Tonsing Gonzales at 1919 Kiva Road, Santa Fe, NM 87505, (505) 984-8035 (v/fax). Disability and Business Technical Assistance Centers on ADA There are ten regional DBTACs funded by the National Institute on Disability and Rehabilitation Research, the U.S. Department of Education, to provide technical assistance and training on the Americans with Disabilities Act (ADA). The Southwest DBTAC, operated by ILRU, features an Hispanic outreach program. By calling 1-800-949-4232 from anywhere in the country, your call will be routed automatically to the appropriate regional DBTAC. American Disabled for Attendant Programs Today One of the oldest and most active grassroots disability rights advocacy groups is ADAPT. Following its tremendous success in advocating for accessible transportation, ADAPT has focused its mission on personal assistance services. With local chapters in many cities around the country, ADAPT is centered in Colorado at 201 South Cherokee St., Denver, CO 80223, (303) 733-9324 (v), 733-6211 (fax). Disability Rights Education and Defense Fund DREDF is an organization dedicated to promoting the civil rights of individuals with disabilities through research, education, and advocacy. The DREDF offices are located at 1633 Q St., NW, Suite 220, Washington, DC 20009, (202) 986-0375 (v), 462-5624 (fax), and 2212 Sixth Street, Berkeley, CA 94710, (510) 644-2555 (v), 841-8645 (fax). Disabled Individuals Movement for Equality Network DIMENET is a computer network that serves the independent living and disability rights movements. It was established in 1985 to meet the demand for a computer network that directly serves the interests of all people with disabilities and that is fully accessible to people with visual impairments. You can access DIMENET from any of three host sites: (508) 880- 5412 (Taunton, MA), (513) 341-5205 (Dayton, OH), and (918) 582-3622 (Tulsa, OK). If you have problems or questions regarding accessing DIMENET, technical assistance is also available from individuals at DIMENET regional host sites: Taunton (508) 880-5325 (v/TTY), Dayton (513) 439-0071 (v), 439-0072 (TTY), and Tulsa (918) 592-1235 (v/TTY). Additional help may be obtained from Roland Sykes at (513) 237-8360 (v) or Paul Spooner at (508) 875-7853 (v/TTY). Independent Living Research Utilization Program ILRU Program is a national center for information, training, research, and technical assistance on independent living. Founded in 1977, its goal is to expand the body of knowledge in independent living and to improve utilization of results of related research and demonstration projects. ILRU, 2323 S. Shepherd, Suite 1000, Houston, TX 77019, (713) 520-0232 (v), 520- 5136 (TTY), and 520-5785 (fax). World Institute on Disability Originally founded in 1983 from within the grassroots disability rights movement, WID's focus is now international in scope. WID conducts research and training in public policy, personal assistance services, and independent living from its headquarters at 510 16th Street, #100, Oakland, CA 94612, (510) 763-4100 (v), 208-9493 (TTY). RESEARCH AND TRAINING CENTERS ON INDEPENDENT LIVING Four research and training centers funded by the National Institute on Disability and Rehabilitation Research (NIDRR), U.S. Department of Education, focus on independent living. They are: the ILRU Research and Training Center on Independent Living at TIRR; the RTC: IL at the University of Kansas; the RTC on Personal Assistance Services at the World Institute on Disability (WID); and the RTC on Public Policy and Independent Living, also at WID. All four centers conduct research and training projects designed to address the needs of individuals with disabilities, as well as state and private entities involved with independent living. More information about each is given below. ILRU Research and Training Center on Independent Living at TIRR The goals of the ILRU RTC are to enhance management performance in independent living centers through improved management and operational practices developed and tested in research-based models, and disseminated through training, technical assistance, and materials development projects. A major emphasis of these training and technical assistance projects is the promotion of networking among individuals and organizations in the independent living field. ILRU RTC is guided by the independent living philosophy, particularly with regard to the substantial involvement of people with disabilities at all levels of RTC operations. Director: Lex Frieden Associate Director: Quentin Smith Director of Research: Peg Nosek Director of Training: Laurel Richards Coordinating Director: Laurie Gerken Redd For more information, contact: ILRU Program 2323 S. Shepherd, Suite 1000 Houston, TX 77019 (713) 520-0232 (v), 520-5136 (TTY), 520-5785 (fax) http://www.ilru.org Research and Training Center on Independent Living at the University of Kansas The University of Kansas operates a national research and training center which focuses on aspects of independent living particular to rural and other underserved populations, including persons with cognitive and psychiatric disabilities. In addition, the RTC conducts consumer control training, conducts research in prevention of secondary health conditions in people with disabilities, and studies successful attainment of vocational rehabilitation goals. Director: Glen W. White Co-Director: James F. Budde Assistant Director: John Youngbauer Training Director: Kenneth J. Golden For more information, contact: RTC-IL at Kansas 4089 Dole Building University of Kansas Lawrence, KS 66045 (913) 864-4095 (v/TTY), 864-5063 (fax) http://www.lsi.ukans.edu/rtcil/rtcbroc.htm The Research and Training Center on Public Policy and Independent Living Funded by NIDRR at the World Institute on Disability, the RTC-PPIL conducts research and training on major disability policy issues including independent living, leadership development, peer support, and community integration. In addition, WID is attempting to establish the first full curriculum for disability studies. The program will offer courses of study at the undergraduate, graduate, professional training, and continuing education levels. Director: Herb Leibowitz Director of Research: Tanis Doe For more information, contact: RTC-PPIL World Institute on Disability 510 16th Street, Suite 100 Oakland, CA 94612-1500 (510) 763-4100 (v), 208-9493 (TTY), 763-4109 (fax) http://www.wid.org The Research and Training Center on Personal Assistance Services at WID One of two RTCs operated by WID, the RTC-PAS was established for the purpose of creating greater understanding about how personal assistance service systems can further the self- sufficiency and economic independence of individuals with disabilities. The RTC will perform a comprehensive evaluation of PAS programs across the country and will seek to define effective PAS from the consumer's point of view. In developing new service programs, the RTC-PAS also focuses on underserved or unserved populations. Director of Training: Simi Litvak Research Assistant: Valerie Bivona For more information, contact: RTC-PAS World Institute on Disability 510 16th Street, Suite 100 Oakland, CA 94612-1500 (510) 763-4100 (v), 208-9493 (TTY), 763-4109 (fax) http://www.wid.org Revised 6/96 _________________________ Developed by the IL NET: NCIL/ILRU National Training and Technical Assistance Project. Requests for technical assistance on this and other independent living issues may be directed to the IL NET Project, c/o ILRU at (713) 520-0232 (v), 520-5136 (TTY), 520-5785 (fax), or NCIL at (703) 525-3406 (v), 525-3407 (TTY), 525-3409 (fax). READINGS FOR THE INDEPENDENT LIVING AND DISABILITY RIGHTS MOVEMENTS DeJong, Gerben. "Independent Living: From Social Movement to Analytic Paradigm." Archives of Physical Medicine and Rehabilitation 60 (October 1979): 435-446. DeJong, Gerben. "Physical Disability and Public Policy." Scientific American 248, no. 6 (June 1983): 40-49. DeJong, Gerben. Environmental Accessibility and Independent Living Outcomes: Directions for Disability Policy and Research. East Lansing: University Center for International Rehabilitation, 1981. DeJong, Gerben and Janice Hughes. Report of the Sturbridge Conference on Independent Living Services. Boston: Tufts Medical Rehabilitation Research and Training Center, 1981. Fasser, Carl E., Quentin Smith, Lex Frieden, Laura W. Smith, J. David Holcomb. "Addressing the Health Care Needs of People with Disabilities." Journal of the American Academy of Physician Assistants 7, no. 1 (January 1994): 26-32. Kailes, June. "Language is More Than a Trivial Concern!" (1984) reprinted in Disability Pride and A Guide to Planning Accessible Meetings (available through ILRU publications). Kailes, June Isaacson. Disability Pride: The Interrelationship of Self-Worth, Self-Empowerment, & Disability Culture. Houston: ILRU Program, 1993. Kailes, June Isaacson, and Darrell Jones. A Guide to Planning Accessible Meetings. Houston: ILRU Program, 1993. Kailes, June Isaacson. Putting Advocacy Rhetoric Into Practice: The Role of the Independent Living Center. Issues in Independent Living No. 8. Houston: ILRU Program, 1988. Lachat, Mary Ann. An Evaluation and Management Information System for Independent Living. Staying on Track: ILRU Management Support Series. Houston: ILRU Program, 1988. Lachat, Mary Ann. The Independent Living Service Model: Historical Roots, Core Elements, and Current Practice. Hampton: Center for Resource Management, 1988. National Council on the Handicapped (now the National Council on Disability). Toward Independence: An Assessment of Federal Laws and Programs Affecting Persons with Disabilities - With Legislative Recommendations. February 1986. Available from NCD, 1331 F Street, NW, Suite 1050, Washington, DC 20004 (202) 272-2004 (v), 272-2074 (TTY). National Council on the Handicapped (now the National Council on Disability). On the Threshold of Independence: A Report to the President and the Congress of the United States. January 1988. Available from NCD (see above). Nosek, Peg, Yayoi Narita, Yoshiko Dart, and Justin Dart. A Philosophical Foundation for the Independent Living & Disability Rights Movement. Occasional Paper No. 1. Houston: ILRU Program, 1982. Pflueger, Susan Stoddard. Independent Living. Emerging Issues in Rehabilitation. Washington, D.C.: Institute for Research Utilization, 1977. Richards, Laurel and Quentin Smith. An Orientation to Independent Living Centers. Houston: ILRU Program, 1987. Shapiro, Joseph P. No Pity. New York: Random House, Inc. 1993. Shreve Maggie, Patricia Spiller, Eric Griffin, Nancy Waldron, and Lynda Stolzman. Martha Williams, ed. Consumer Control in Independent Living. Available from: Center for Resource Management, 2 Highland Road, South Hampton, NH 03847; (603) 394-7040 (v/TTY), 394-7483 (fax). Smith, Quentin, Lex Frieden, and Laurel Richards. "Independent Living." Encyclopedia of Disability and Rehabilitation. New York: Macmillan, Inc., (in press, 1994). Smith, Quentin, Laura W. Smith, Kym King, Lex Frieden, and Laurel Richards. Health Care Reform, Independent Living, and People With Disabilities. Issues in Independent Living No. 11. Houston: ILRU Program, 1993. United States Department of Education. Comprehensive Evaluation of the Title VII, Part B of the Rehabilitation Act of 1973, as Amended, Centers for Independent Living Program. January 1986. Available through clearinghouses (see below). Willig, Chava Levy. A People's History of Independent Living. 1988. Available from the Research and Training Center on Independent Living, 4089 Dole Building, University of Kansas 66045; (913) 864-4095 (v/TTY). In a special edition on independent living in American Rehabilitation 20, no. 1 (Spring 1994): Giordiano, Gerard and Bruno J. D'Alonzo. "The Link Between Transition and Independent Living," 2-7. Shreve, Maggie. "The Greater Vision: An Advocate's Reflections on the Rehabilitation Act Amendments of 1992," 8-13. Smith, Laura W., Quentin W. Smith, Laurel Richards, Lex Frieden, and Kym King. "Independent Living Centers: Moving Into the 21st Century," 14-22. Chappell, John A., Jr. "The Whole is Greater Than the Sum of its Parts," 23-29. Moore, J. Elton and Barry C. Stephens. "Independent Living Services for Older Individuals Who are Blind: Issues and Practices," 30-34. Montagano, Tim. "Bringing the Rehabilitation Family Together: An IL-VR Partnership," 35-36. Lougheed, Val, Bev Hunter, and Susan Wilson. "Partners for Independence: A Team Approach to Community-Based Rehabilitation," 37-38. Baker, David. "Independent Living in Communities: The Role of the Independence Fund in Vermont," 39-41. Lachat, Mary Ann. "Using the Power of Management Information System Technology to Support the Goals of Centers for Independent Living," 42-48. In a special issue on independent living in OSERS 6, no. 2 (Winter-Spring 1994): French, Duane. "Independent Living: Driven By Principles of Democracy," 37-38. Kafka, Bob. "Perspectives on Personal Assistance Services," 11-13. Kennedy, Jae, Hale Zukas, and Simi Litvak. "Independent Living and Personal Assistance Services: The Research, Training, and Technical Assistance Programs at the World Institute on Disability," 43-45. Mathews, Mark R. "Learning from the Experts: Best Practices in Rural Independent Living," 23-29. Michaels, Robert E. "Title VII: A Major Step Forward," 8-10. Nelson, John. "Changes in the Rehabilitation Act of 1973 and Federal Regulations," 4-8. Smith, Quentin, Lex Frieden, Laurel Richards, and Laurie Gerken Redd. "Improving Management Effectiveness in Independent Living Centers through Research and Training," 30-36. Tate, Denise and Julie Daugherty. "The Effects of Insurance Benefits Coverage: Does It Affect Persons with Spinal Cord Injury?" 19-22. Westbrook, John D. "Consumer-Driven Supported Employment: Consolidating Services for People with Significant Disabilities," 14-18. Ziegler, Martha. "How Parent Networks Are Working with Independent Living Centers," 39-42. In a special issue on rural independent living in the Rural Special Education Quarterly 11, no.1 (1992): Clay, Julie Anna. "Native American Independent Living," 41-50. Curl, Rita M., Shanna M. Hall, Linda A. Chisholm, and Sarah Rule. "Co-workers as Trainers for Entry-level Workers: A Competitive Employment Model for Individuals with Disabilities," 31- 35. Nosek, Margaret. "The Personal Assistance Dilemma for People with Disabilities Living in Rural Areas," 36-40. Potter, Carol G., Quentin W. Smith, Huong Quan, and Margaret A. Nosek. "Delivering Independent Living Services in Rural Communities: Options and Alternatives," 16-23. Richards, Laurel and Quentin Smith. "Independent Living Centers In Rural Communities," 5-10. Seekins, Tom, Craig Revesloot, and Bob Maffit. "Extending the Independent Living Center Model to Rural Areas: Expanding Services through State and Local Efforts," 11-15. Smith, Quentin W., Carl E. Fasser, Stacy Wallace, Laurel K. Richards, and Carol G. Potter. "Children with Disabilities in Rural Areas: The Critical Role of the Special Education Teacher in Promoting Independence," 24-30. We Won't Go Away, videocassette. Sells for $20 each, including postage, from the World Institute on Disability, 510 16th Street, Suite 100, Oakland, CA 94612 (510) 763-4100 (v), 208- 9493 (TTY). The Disability Rag. A bi-monthly publication reflecting ideas and discussions in the disability rights movement. Available at $12 for a one-year subscription. Write to: Subscriptions, The Disability Rag, 1962 Roanoke Ave, Louisville, KY 40205 (502) 459-5343 (v/TTY/fax). Most of the readings cited above can be obtained from resource clearinghouses. Several are listed below and can be reached for further information about publications and modem-accessible databases by mail or telephone.  National Clearinghouse of Rehabilitation Training Materials, Oklahoma State University, 816 West Sixth Ave., Stillwater, OK 74078 (800) 223-5219.  National Rehabilitation Information Center (NARIC), 8455 Colesville Road, Suite 935, Silver Spring, MD 20910 (800) 346-2742 (v), 227-0216 (TTY).  ERIC Clearinghouse on Disabilities and Gifted Education (formerly the ERIC Clearinghouse on Handicapped and Gifted Children), 1920 Association Dr., Reston, VA 22091, (800) 328-0272 (v/TTY) at the Council for Exceptional Children, (703) 620-3660, ext. 307 (v). ILRU also offers a number of publications and other materials on various independent living subjects. For a listing of resource materials contact ILRU at 2323 S. Shepherd, Suite 1000, Houston, TX 77019, (713) 520-0232 (v), 520-5136 (TTY). For resource materials and technical assistance on the Americans with Disabilities Act, there are ten regional Disability and Business Technical Assistance Centers (DBTACs). One toll-free number, 1-800-949-4232, will direct your call to a technical assistant in your region. Resource materials are published by the U.S. Department of Justice and many are available free of charge. The Southwest DBTAC in Houston, Texas offers technical assistance and some resource materials in Spanish as well as English. Revised 6/95 Developed by the IL NET: NCIL/ILRU National Training and Technical Assistance Project. Requests for technical assistance on this and other independent living subjects may be directed to the IL NET Project, c/o ILRU at (713) 520-0232 (v), 520-5136 (TTY), 520-5785 (Fax), or NCIL at (703) 525-3406 (v), 525-3407 (TTY), 525-3409 (Fax). "FOR THE CRIME OF BEING DIFFERENT" EXPLORING DISABILITY RIGHTS, HISTORY, PHILOSOPHY, AND CULTURE LEARNING OBJECTIVES  Explore the roots of our culture with your colleagues.  See, feel, and hear expressions of our culture.  Track the journey from disability shame to disability pride.  Explore independent living philosophy--past, present, and future--from a disability culture perspective.  Discover how the evolution of our culture can affect the future of your center and the community.  After all these years of discussing language, explore how language still influences our beliefs.  Understand how beliefs affect action.  Discover if your colleagues think the way you do...and is that important?  You decide: will independent living be a twenty-first century movement? ACKNOWLEDGMENTS "Out of Isolation," reprinted with permission from Frank Moore. Entire poem is available through The Next Renaissance: A Catalog of Disability Art, Culture & Collectibles, 2260 Sunrise Point Road, Las Cruces, New Mexico 88011. "Tell Your Story," and "Martyrs," from Pain, Plain--and Fancy Rappings: Poetry from the Disability Culture, reprinted with permission from the IDC. Available through The Next Renaissance: A Catalog of Disability Art, Culture & Collectibles, 2260 Sunrise Point Road, Las Cruces, New Mexico 88011. "Sonata in the Lingering Keys of Life," "Where Is...," and "Pain Tablets" reprinted from Voyages: Life Journeys with permission from the Institute on Disability Culture. Available through The Next Renaissance: A Catalog of Disability Art, Culture & Collectibles, 2260 Sunrise Point Road, Las Cruces, New Mexico 88011. "The Fishing is Free," and "Disabled People Do It!" reprinted with permission from Jane Field. Tape available through The Next Renaissance: A Catalog of Disability Art, Culture & Collectibles 2260 Sunrise Point Road, Las Cruces, New Mexico 88011. "I've Gone Too Long (Without Democracy)" reprinted with permission from Frederick M. Markham. Tapes available through The Next Renaissance: A Catalog of Disability Art, Culture & Collectibles, 2260 Sunrise Point Road, Las Cruces, New Mexico 88011. "For the Crime of Being Different" reprinted with permission from Jeff Moyer. Tape or compact disc available through The Next Renaissance: A Catalog of Disability Art, Culture & Collectibles, 2260 Sunrise Point Road, Las Cruces, New Mexico 88011. "In Search of Disability Culture" reprinted with permission from New Mobility: Disability Lifestyle, Culture, & Resources, P.O. Box 15518, N. Hollywood, California 91615-9773, http://www.newmobility.com. "We Are Who We Are...So Who Are We?" reprinted with permission from MAINSTREAM: Magazine of the Able-Disabled, P.O. Box 370598, San Diego, California 92137-0598, http://www.mainstream-mag.com. "Night Screams," "Annotated Bibliography" reprinted with permission from IDC. Available through The Next Renaissance: A Catalog of Disability Art, Culture & Collectibles, 2260 Sunrise Point Road, Las Cruces, New Mexico 88011. "Disabled Women: Visions & Voices" shown with permission from Suzanne C. Levine. Video produced by Wide Vision Productions, P.O. Box 22115, San Francisco, California 94122-0115. Available through The Next Renaissance: A Catalog of Disability Art, Culture & Collectibles, 2260 Sunrise Point Road, Las Cruces, New Mexico 88011. "No Apologies" shown with permission from Wry Crips. Video available through The Next Renaissance: A Catalog of Disability Art, Culture & Collectibles, 2260 Sunrise Point Road, Las Cruces, New Mexico 88011. "Storm Reading" shown with permission from Rod Lathim, producer. Non-profit organizations who would like to receive one free VHS copy may send a short request on letterhead with proof of non-profit status and a self-addressed, padded envelope with $3 postage attached to: Rod Lathim, 2428 Chapala Street, Santa Barbara, California 93105. EXCERPT FROM "OUT OF ISOLATION" by Frank Moore I lie here in my universe of the mat, my bed. I always have been here lying in my universe forever, forever. My mat, my pillow, my sheet, my blanket...for countless force-fed meals, enemas, baths, shaves, haircuts, pissed-on sheets...many many harsh-lighted days, many, many semi-dark nights. Outside my universe there are bony fingers, blotch-skin creatures. Sometimes they invaded my universe...the sickly-sweet smelling ones. They "take care of me"...they handle me like they handle my pillow. Their voices are high, loud, flat. Sometimes they lie on beds beside mine, moaning and crying for alone many many, then they get quiet and others of them carry the still ones away. There are always new ones, but they are always the same. There are different bony fingers who invade my universe, who strip me, probe me stretch me until it hurts...do strange things to me like rubbing ice on my body then brushing me hard. They talk to me in funny ways...loud and flat. They say, "We are doing this for your own good." They don't think I understand what they are saying. I don't understand most of their words. But I understand enough, I understand I am not a Mister, a Mrs., a Miss, a Nurse, a Doctor. I understand I am not bony fingers. They can keep their universe of bony fingers. I am not going out of my universe of the mat. I understand enough. A long long, when I cried out, they made me numb. I do not like being numb. In my universe of the mat, I am not numb. But they said crying out was not "appropriate behavior". I do not think appropriate behavior is good. Everything that is not appropriate behavior makes me feel. But I understand enough to stop crying when the bony fingers are around. Stop making any sound, any move when they are around. They stopped making me numb. I understand enough. I discovered a way of rubbing myself that makes me warm, makes me feel good. Bony fingers slapped me away from feeling good. Not appropriate behavior. I understand enough. I do appropriate behavior in the harsh light when they are around. I am still, quiet. In my universe of the mat. I do not even look into their world. I am busy creating within me. But when the harsh light goes and the semi-darkness comes...when only the still or moaning bony fingers are around...I move, I laugh, I cry, I rub my body and good feeling comes. Not so loud or so much that the harsh light, the bony fingers, and their numbness come back. But just enough. And by rubbing, I know I am not bony fingers. Selections reprinted by permission of the author, Frank Moore 1986, 1995. "TELL YOUR STORY" by Steven E. Brown Tell your story, Tell your story, It may bump from the page Like words of braille Sizzling in tales of blazing glory; It may glisten in the sunshine like the holy grail, So tell me a tale, even if it's gory, I'm yearning to hear you Tell your story. Have you heard 'Bout the man In the 'lectric wheelchair? Found no ramp at the movie theater Did he despair? No, Just let them dudes lift him in there. Came back a few days later After somethin' greater Brought with him a crew Them people in chairs just grew and grew, Sitting in chairs all 'round They did not frown. For they all Said they knew They'd be part of the view; No problem getting in, Just lift and push And move those hunks of tin. The chairs, they weighed aplenty, The ushers, they stressed and strained and got somewhat benty. Seeing the movie was not the goal Changin' the stage was the whole They paid for gettin in But it was that theater that knew it sinned, Them people in those chairs put their personal stamp On that theater's shimmering new ramp. Tell your story Tell your story It may enrapture the floating air Like ASL singing its flair It might even glisten like the holy grail, But no one will set their sail Toward your tale, Even if it's hunky-dory, Unless you tell your story Tell your story. Once I knew a lady Got caught in a picket line, Changed her whole design: Came back to her hometown Mission bound. Told a hospital it was ailing Cause it was failing to see Good health bound in the key Of phone lines hooked up with a TDD. Said she'd seek cooperation to some degree, Or she'd be mighty angry, Might even round up some folk And stoke the fires of insurgency, Gather signatures and seek publicity. You know that hospital saw the light Put an end to the no TDD blight. Last time I saw that lady She was waving a sign Telling a TV station That she sure did mind No news she could see So why she should she listen to what they wanted her to be. Now she knows how to stick it With a picket And her pockets have been lined with advocacy. Tell your story Tell your story You may find you touch With the sureness of a crutch A framework for your dwelling, A story needing telling, You may find it steaming like a sunburnt trail Or glistening like the holy grail But who will know what you entail Unless you risk the path to glory And tell your story Tell your story. Does he want another cup of coffee? I heard the waitress ask about the man, How the hell did I know his plan, Just cause he couldn't see Didn't mean his brain rested in incompetency. The stories he has told Have often been so brisk and bold I've shared them with more than a few Over a cup of coffee or a brew. The lessons are in the telling They provide a framework and a dwelling. We all have so many stories to bear Cry, laugh, sing, and despair; But how will our children learn and compare If we feel too timid to dare To raise the flare And share that we care. Tell your story Sing your tale, Tell our story, Shout our glory. Tell our story Tell our story It may not bring fame It may have no glory But could move through someone's life like a ray of sunshine Or break away barriers like a layer of turpentine, So tell your story Tell your tale Do not fail. We're not as elusive as that holy grail. Reprinted with permission of the author, Steven E. Brown 1997. HISTORICAL PERCEPTIONS OF PEOPLE WITH DISABILITIES IN THE UNITED STATES General Time Frame Perception Colonial period Paternalism, or attics, closets, and almshouses Early nineteenth century Competition and deviance, or schools, prisons, and asylums Early twentieth century Dominance and fragility, or purity, reform, and a president in disguise Mid-twentieth century movements Rehabilitation and independence, or sit-ins, and disability rights Late twentieth century Charity and celebration, or telethons, paradigm shifts, and disability culture SCENARIO ONE "MIRROR, MIRROR ON THE WALL" An independent living center hires a community advocate who immediately takes off like gangbusters, drawing both the city and county into a series of meetings about enforcing ADA compliance, and educating the news media. His understanding of the movement grows daily, and he's a natural spokesperson. His sense of self seems strong and he feels the concept of disability pride is an important one. In describing his sense of pride he says that when he looks in the mirror, "he doesn't even see the disability." Discussion Questions 1. What do you think he means by the statement, "he doesn't even see the disability?" 2. Can you be an effective advocate and at the same time not see yourself as disabled? 3. Can you understand the movement if you don't see yourself as disabled? 4. What is disability pride? SCENARIO TWO "SAY WHAT YOU MEAN AND MEAN WHAT YOU SAY" Recently, a famous person with a disability was interviewed on a radio show. He commented that his friends sometimes said that they did not see his wheelchair or his disability when they were with him. The famous person commented that what was left unsaid was that his friends did not want, or intend, to see his wheelchair--or his disability. Discussion Questions 1. Is it a compliment for someone to tell you they don't notice your disability when you know they mean well? 2. Did it bother the famous disabled person that people did not see his wheelchair or disability? 3. What kind of response would you give in a similar situation? SCENARIO THREE "WHAT'S MY LINE?" An independent living center makes substantial changes in its policies and takes a new name. It is decided that the logo should also be changed, since the current one does not symbolize disability in any way. A design theme is conceived by a local artist, using a wheelchair as part of the logo. The board of directors of the center vetoes the design because of its inclusion of a wheelchair. The board states that a disability symbol is depressing, and that there are other disabilities represented by the center besides wheelchair users. Discussion Questions 1. What makes a symbol depressing? 2. Can the wheelchair symbol represent all disabilities? 3. Can an ILC fulfill its mission if it is unwilling to have disability-related symbols as part of its logo? SCENARIO FOUR "IT'S NOT MY PROBLEM" During a 1997 meeting with the mayor, disabled community members state that they are unwilling to wait any longer for the ADA to be enforced. The mayor chastises the group for being unfriendly. He also asserts that it is not his job to see that every law is enforced. He relies on his community to let him know which laws require attention. He states that he has an open door policy, and that anyone can come to him at any time to discuss concerns. He then asks each member of the group if they have ever tried to contact him about the city and the ADA. The group members become defensive and say no. One group member states that it is not the responsibility of individuals in the community to make sure the mayor complies with federal laws. Discussion Questions 1. Who is responsible for enforcing the law? 2. Is the mayor trying to deflect the issue? 3. If constituents do not inform politicians of laws that are important to them, can politicians be held accountable for every law? 4. Is the mayor right? Would the group be more effective if it was friendly rather than confrontational? SCENARIO FIVE "NOW, PLAY NICE..." A volunteer at the local ILC has been working hard for community change. She's organized a group of disabled people in town to meet with the mayor to discuss the city's need to comply with the ADA. In preparation for the meeting, the news media have been contacted and briefed on several issues. A few days before the appointment with the mayor, the volunteer is told that the ILC's board of directors wants her assurance that no one in the group will say they are from the center. The reason for this is that the board wants to make sure the center receives no bad publicity. Discussion Questions 1. Is this ILC complying with Title VII regulations about advocacy? 2. If not, what should the volunteer do about it? 3. What constitutes bad publicity? 4. What is the ILC teaching the group about independent living? 5. What message does the group get about the center's role in the community? SCENARIO SIX "HOME SWEET HOME" A man with cerebral palsy who uses a wheelchair and has a significant speech impairment has lived in a nursing home for many years. He moved into the facility with his mother when he was a young man. Although his mother died several years ago, he feels no need to move. Both the staff and other residents of the nursing home are his support system. He can come and go as he chooses. Indeed, he has traveled all over the state to attend conferences, see friends, and visit tourist attractions. He is on the board of the local CIL and is a well-known advocate in the community. Although he knows there are people who don't understand his choice to remain in the nursing home, it is what he wants. Even if he did want to move, there are few accessible residences in the community. He wonders why people won't just leave him alone and stop pestering him all the time to move out? Discussion Questions 1. Can this man be an effective spokesperson for the disabled if he is living in a nursing home? 2. Your center believes in the abolition of nursing homes. How can you convince the community that you are sincere in this goal while supporting the decision of a board member to live in a nursing home? 3. How can the center staff best support this man to be independent? SCENARIO SEVEN "OH, YOU'RE SO SENSITIVE" A group of disabled advocates are getting ready to demonstrate against physician-assisted suicide. You have Environmental Illnesses/Multiple Chemical Sensitivities (EI/MCS) and you cannot be around smoke, perfumes, and other strong odors. You have spoken previously with the group about the need for awareness of your disability, but they will not ask that people refrain from smoking or wearing perfumes and other scents. This leaves you and others with your disability unable to join the demonstration and add your voices to issues you feel strongly about along with your disabled peers. You feel that what is needed (at a later date) is a protest of the protesters to bring attention to your issues. Discussion Questions 1. Do advocacy groups have a responsibility to accommodate all disabilities? 2. What kind of accommodations, if any, would you make? 3. Is the person with EI/MCS being unreasonable? 4. As a CIL director, what would you do if there are representatives of both groups (protesters and people with EI/MCS) on your staff? "THE FISHING IS FREE" by Jane Field The fishing is free with your disability You don't need a licence like the rest. Movies are half the price, well isn't that nice? And the parking spots are nothing but the best. Well, don't you wish that you were disabled? Disabled is the better way to be. With crutches, canes and braces, wheelchairs to run races Don't you wish that you were just like me? With Wheel-Trans to get about, it's a wonder we go out It's so much fun to try to book a ride. You phone 4 days ahead and if you're lucky so it's said You might get there, but if you don't, don't be surprised. Well, don't you wish that you were disabled? Disabled is the better way to be. Some chairs are motorized and high-tech computerized Oh, don't you wish that you were just like me? The deaf have got sign language, the blind have got their dogs Their loyal trusted guides are at their sides. Well everyone has their vices, but we've got our devices Oh, don't you envy us our privileged lives? Well, don't you wish that you were disabled? Disabled is the better way to be. When we go out it's really neat, we're always sure we'll get a seat Oh, don't you wish that you were just like me? No one knows just what to call us which label should befall us, And they're some dandy terms from which to choose. My favourite's "wheel-chair bound" cause it has a bondage sound. Oh it's fun to guess what term they're going to use. Well, don't you wish that you were disabled? Disabled is the better way to be. There are special entrances in stores, they let us in through the back doors Oh, don't you wish that you were just like me? I tell you we've got all the breaks, 'cause we've got just what it takes I haven't even mentioned income tax. There are credits and reductions to give us tax deductions When April comes around I guess we can relax. Oh don't you wish you wish that you were disabled? Disabled is the better way to be. With all these benefits and perks that's how the system works Oh, don't you wish that you were just like me? Oh the fishing is free with your disability You don't need a licence like the rest. Movies are half the price, well isn't that nice? And the parking spots are nothing but the best! Reprinted by permission of the author, Jane Field 1994. "DISABLED PEOPLE DO IT!" by Jane Field Disabled people do it Disabled people do it Disabled people do it too. We may not have agility, But we've got the ability, To find a way to do it too. I think we've got more inventive, 'Cause we've got the incentive To find new ways to satisfy, And if it works we'll try it, No one can deny it, If you can do it, so can I. We've got the best devices, We know what entices, We have the most alluring ways. So come on and sit back now. Who cares if it takes all day? You know sex is in your head It's only partially in bed, And getting there is half the fun. If you think we're not sexual, Or our love is ineffectual, Well, you can't be my honeybun! Reprinted by permission of the author, Jane Field 1994. "MARTYRS" by Steven E. Brown I. The following have drawn their last breath, They've been courted by death Many gave their lives to the cause Their passing should give us pause Many gave all their hearts had to give So the rest of us might live II. Sandra Beasley... Wade Blank... Sheldon Berrol... Elizabeth Boggs... Roger Chambers... John Clogston... Tim Cook... Gerald Davis... Dave De Weerd... Phil Draper... Cheryl Elliott... III. The list is not complete There will never be such a feat; The deeds are not done Many more tales have yet to be sung: My list, my friends, my foes, the lines grow longer every day, Leaving me breathless, with much too little to say, Tribute to those whose voices we no longer hear, Tribute to those whose vision we still are privileged to see, Tribute to those whose dreams are yet to be; Death be not too loud, Life's accomplishments demand be proud: IV. Milton Erickson... Pat Fallin... Lockhart Follin-Mace... Gerald Garner... Gary Harmon... Lynn Hart... John Hessler... Cristina Hopkins... Gini Laurie... Durward McDaniel... Kirk MacGugan... V. Remember, we remember, tears and laughter, Friends and foes Hugs in victory, surrender from those we oppose, Remember, we remember, laughter and tears, Cries and fears; Remember, we remember, heroes and martyrs, Deals and barters, Remember, we remember, those who have gone before, Remember, we remember, those who paved the way, Remember, we remember, for those of us who stay, Remember, we remember, for all our descendants who will be here one day. Remember, we remember... Remember, we remember... We remember...we remember... Remember...we remember... Memories will stay, It's up to all of us, To make sure and say, Memories will remain to energize each day, Memories will keep the wolves at bay, Memories will sustain our way. No list will ever be complete There will never be such a feat; The deeds are not done Many more tales have yet to be sung: VI. Sharon Nelson.... Lonnie Nungesser... Randy Shilts... John Simpson... Benjamin Stuart... Ed Roberts... Bill Tainter... Diana Viets... Ray Zanella... Irving Kenneth Zola... VII. These tales we tell have begun, Songs and poems and stories in all their glories These tales we tell have begun, I don't believe an ending will ever come. Reprinted by permission of the publisher, Institute on Disability Culture 1995. "SONATA IN THE LINGERING KEYS OF LIFE" by Steven E. Brown I. Found Jim Morrison wailing at me on the radio last night: "C'mon, baby, light my fire," Soothed-voice, throaty, alive, except, of course, he is not... 1969, a magical year in so many of our lives, A number tipping the consciousness only after meditating upon those thirty years gone, except, of course, they are not quite thirty years gone... Morrison, Joplin, Hendrix, Candles dying through flames bright. Memories intense, Lives vivid, Whole notes remain. II. Idol conversations? Wordphrases streaming daily now If only I would listen-- But I am. Voices searching, seeking me out, Not those of gods and goddesses, but frail and mighty warriors. Sometimes screaming from beds as tightly bound, as completely free, as prisons. Sometimes screaming from conferences, festivals of the soul; An only outlet for many of thy voices. III. Ali Baba's magic words barely open any doors for my people, whose voice do we have? the lame and the halt, the biblical meek, the Reagan rejects roaming the streets. Some slaves of old Found comfort in the words of glorious spirituals and glory in the future of the spirit. Their gateways handed down to the trodden of a new century. Shimmering hope-- heaven unbridled by earthly restrictions. IV. The greatest compliment you could once bestow: "You don't seem any different to me"-- In my eyes you are normal-- meaning you are like me somersaulted into an insult while you weren't looking. What makes you white man, black man, red woman, yellow woman, brown child, rainbow race, Believe that putting two feet on the ground, Waving two arms in the air, Having a face unmarred except caked, Thinking in a straight line Or famed, artistic, eccentric convolution Spells normality, Meaning if you are not like me You had better want to be like me... Normalized? V. Rocky, jagged outcroppings Snagging us. One-liners dropped into a history book or two Ed will one day make it into your seventh-grader's notes But Morrison, Joplin, and Hendrix I don't see replaced by Zola, Zanella, or Follin-Mace. VI. The world has begun to give me a gift of recognition of my poetry, my zeal and carefully-planned idolatry. Pain poems magnify, intensify Perhaps they'll never rinse away; Perhaps my purpose, or a part of its part, Is to have this conversation To hear this voice which has found others' listening and others' straining to hear and others' needing to hear and face their own fear. VII. Naked truths don't lie... Still who will believe this difficult excursion? Not paint it with sugar-coated candied explanations of good-heartedness, god-plannedness? Who will just listen nod their head in acknowledgement, contemplation, recognition? Who will not listen rush to aggravation, defense, censorship? "Break on through to the other side." VIII. BREATHING My poetry, like my body... survives. Reprinted with permission from the publisher, Institute on Disability Culture 1996. "WHERE IS...?" by Steven E. Brown Where is our Malcolm, I heard them say, Over and over again, two or three years ago, When Spike Lee and Denzel Washington made Malcolm X come alive once more; Where is our Malcolm, I heard them say, Over and over again, two or three years ago, When Spike Lee and Elijah Muhammad destroyed and martyred Malcolm once more, Where is our Malcolm, my sisters and brothers wrote, Over and over again, two or three years ago, Bemoaning our missing Malcolm, Apparently forgetting the Heroics of The Man Led also to the Annihilation of The Man, And apparently forgetting also, The Incarceration, Annihilation, mostly-silent martyrdom of our brothers sisters Across the land, In nursing homes and out, Supported by the morals And the Courts OF OUR TIMES As we struggle TO FEED OURSELVES TO CLOTHE OURSELVES TO HOUSE OURSELVES TO MOVE OURSELVES TO IMPROVE OURSELVES TO SUPPORT OURSELVES TO BE OURSELVES Where is our Martin, I hear over and over again, From my brothers and sisters, Forgetting about Judy and Ed, Lex and Justin, Marca and Denise, Where is our Martin, I hear over and over again, Forgetting that even Martin was not merely Martin, He, too, was Stokely and Meredith and Eldridge and the Evers and the Panthers and the Christians and the Muslims; Martin was the Power, Martin was even Malcolm, Martin was X--We all were-- Some of us still are. Where is our James Baldwin, our Richard Wright, our Ralph Ellison, our Maya Angelou, our Toni Morrison, I ask myself over and over again, Not remembering, often enough, Irving Kenneth Zola, Anne Finger, Lorenzo Milam, Jean Stewart, Hugh Gregory Gallagher, Kathi Wolfe, Paul Longmore, and so many other resilient voices, including, I'd like to think, myself. When will... We eliminate... Where is... From our vocabulary... And replace it with... We have... We have... WE HAVE... WE HAVE!!! Reprinted with permission from the publisher, Institute on Disability Culture 1996. "I'VE GONE TOO LONG (WITHOUT DEMOCRACY)" Words by Frederick M. Markham Music by Ramsey Kearney TEMPO: UPBEAT VERSES I've been without democracy too long. Listening to people that stirred me wrong. I believe that King is innocent, And I see us getting militant. Bolishe mobs growing strong, Oh, I've been without democracy too long. Drugs and democracy really do mix, while your drinking whisky by the fifth. I've been treating the poor too kind. Been ignoring the rich, I must be blind. I've been putting the congressman down, so, they rarely come around? Oh, I've gone too long without democracy. CHORUS Well, what's wrong with me? Oh, people can't you see? I've gone too long without democracy. Reprinted with permission from Frederick M. Markham 1993. "FOR THE CRIME OF BEING DIFFERENT" by Jeff Moyer For the crime of being different, for the crime of being slow For the crime of not quite fitting in, we sentence you to go Where you will be with others who are also of your kind Far, far away from city lights, out of sight and out of mind. The sentence is quite final, there can be no appeal You have no right of protest, no defense nor free man's bail Within the institution, away from prying eyes Drugs and grinding tedium will become a way of life. Through the power of the people and in the wisdom of the State We sentence you to go away and live your star-crossed fate Perhaps in time these wall will fall, these prisons will be shunned But til that time this sentence stands, the State's will shall be done. For the crime of being different, for the crime of being slow For the crime of not quite fitting in, we sentence you to go Where you will be with others who are also of your kind Far, far away from city lights, out of sight and out of mind. Reprinted with permission from Jeff Moyer 1988. "IN SEARCH OF DISABILITY CULTURE" by Miriam Braunstein Although disabled since age 8, I was almost 19 years old before I had any inkling that there was something people call disability culture. I first heard about it three years ago from a friend living in Berkeley, Calif., who happened to be picking up a few hours working for Hale Zukas, a founder of the Berkeley Center for Independent Living. Zukas had also helped build the World Institute on Disability alongside its founders, Judith Heumann, Joan Leon, and the late Ed Roberts. Then, of course, those names meant nothing to me. "There's a magazine with angry letters," my friend said, referring, I believe, to The Disability Rag. "And there's one with the quadriplegic Playboy model. They have stories, ads, stuff like that." Well, who would believe a story like that? As proof, he sent copies of these things, along with ADAPT sticker cutouts and WID literature. I was mesmerized. Nineteen years as a Jew, with all the history it entails, had not prepared me for anything like this. At first, even the idea of catheter ads was liberating. I had no idea that disability was discussed outside the hospital wards. I didn't know that disabled people talked to one another, much less organized. As intrigued as I was, my ablebodied parents were wary. As my interest grew, they moved from nervous to terrified and finally to combative. "What," my mother asked, "is with this crippled thing? Why are you reading this stuff?" "Well, I like to read about other disabled people," I said, or something near. "I like to hear what they think." They think like me, is what I was thinking, but not saying. Well, you have nothing in common with them, said my father, and that was all they wanted to hear of it. Culture was important things, they said, like your religion. A disease shouldn't define you. To their minds, as to the minds of any number of nondisabled people operating under old notions about the nature of disability, I was a nice Jewish girl who was sick. And even if it wasn't my fault, I certainly wasn't supposed to run around flaunting it, for heaven's sake. A little decorum and embarrassment, please! In other words, my disability was a circumstance, not a part of who I was. A SKEWED HISTORY I was getting my first taste of sharing a common culture with those I increasingly felt were my people, and it was intoxicating. If this was disability culture, I had to find my own place in it, regardless of what any number of ablebodied people thought. That is not as simple as it seems. It is easy to find signs of disability culture; I had the magazines, a bit of history and a feeling of kinship with the disabled community. I had When Billy Broke His Head...and Other Tales of Wonder, a couple of bios of famous gimps, a threatening bumper sticker and a real desire to find out who I was. What I didn't have was a solid feeling of what, exactly, disability culture is or why it should be so upsetting to the ablebodied people in my world. And that is what I began looking for. Steven Brown, a co-founder of the Institute on Disability Culture in Las Cruces, N.M. has spent a good deal of time considering the elusive combination of disability and culture. To Brown, it is the communal experience of oppression and resilience that generates the art, music and literature of disability culture. "Most importantly," Brown says, "we are proud of ourselves as people with disabilities. We claim our disabilities with pride as part of our identity." It is, however, that identity that can be amazingly hard to come by. Unlike other established cultures, we have precious little family tradition; with the exception of some hereditary disabilities, disabled children are not usually born to disabled parents. Given Brown's model-- which places the history of oppression that disabled people share firmly at its epicenter--this lack of intergenerational contact is a decided disadvantage. "What we don't have is parents with disabilities teaching kids with disabilities," he says. "What we do have is people of an older generation teaching people of a younger generation." The triumphs of modern medicine have gone a long way toward providing second and third generations. In the days when spinal cord injury was, at best, something you could survive but not live with, when muscular dystrophy and spina bifida were fatal and most other people with disabilities were kept in back bedrooms or in institutions, older disabled role models were hard to come by. Only after people with disabilities were let out of the house with Section 504, IDEA, and, later, the ADA, and only after medicine advances enough to keep us alive if not kicking, was there any chance of an oral history being discovered. It exists, says Brown, but it isn't easily accessible. "We didn't think we had a history," he says, "Well, we have one, but nobody thought it was worth telling." If the key to disability culture lies in our history, as Brown suggests, then a whole new problem arises; namely, how to access that history. A sprinkling of new books written in the past few years--No Pity and Enforcing Normalcy, for example--focus on disability history and several more at least touch on it. But before the early 1980s, very little was written on disability that wasn't clinical. Even less, with a few notable exceptions, was written by disabled people. That is the biggest problem, says writer and performance artist Cheryl Marie Wade, who lives in Berkeley. If disability history is recorded by nondisabled people, it isn't really a part of disability culture. "Disability culture," says Wade, "is disabled people talking about ourselves." And it is ablebodied people, she says, who apportion money for the disabled artistic community--thus negating the point of disability culture. "A lot of the programs were started by well-meaning ablebodied people," Wade says, "But the community outgrew the organizations, and the organizations don't reflect that. The paid positions are held by ablebodied people. They set the tone. They set the agenda." As long as that is the case, she says, disability culture is a footnote to mainstream culture, "a subculture." Wade says her work expresses, to the best of her ability, what it is to be disabled. She will scream, yell, wave her bent hands in people's faces. That, she says, is one component of disability culture--to bring the existence of a whole group of people with an entirely separate agenda and lifestyle to the attention of the mainstream community. This is the part of disability integration that cannot be legislated. "Just because we have ramps doesn't mean people look at us as human beings," Wade says. "The point is to say, "Hey you, we're not just like you, but so what?'" Like Brown, Wade points to pride as a definitive part of culture. It was not until she threw the shawl that she used to hide her hands of her lap and out of her life that Wade was able to become an artist and confront society's view of the disabled. A SCHIZOPHRENIC LINE Paradoxically, disability culture is held to be both a means to insulate ourselves from the larger society and a means to integrate ourselves. Again, says Brown, it comes down to confidence and pride. If the disabled community can band together in its culture, it can force its way into the collective consciousness of mainstream culture. "It's the opposite of anti-mainstream," Brown says. "It's not possible for people with disabilities to truly integrate until we are recognized as having pride in who we are as disabled people." "We walk an almost schizophrenic line," agrees John Kemp, CEO of Very Special Arts, an organization based in Washington, D.C., that funds disabled artists world-wide. "We talk inclusion, and then we talk disability pride." Like Brown, Kemp says the two goals can coexist. Pride, he says, is making claims for our rights based on self-worth, and disability culture is expression of the ways in which we value ourselves and our contributions. "A whole lot of people don't know how the arts can express what joyous lives we can have," Kemp says, and the ignorance includes disabled people. There is no way of knowing how few or how many people actually understand disability pride, or really experience it. Most disabled college-age people were born after Section 504, and were still in their mid-teens when the ADA was passed. In spite of all the legislation, disability culture, history, pride and activism are still, for many people, an accidental find. They are spread primarily through community word-of-mouth, which doesn't work well in an isolated and fragmented population. Access to disability culture must be increased, Kemp says, if young people are to continue to help it develop . "They need to know who their heroes are," he says. "It's a funny thing, because I was always told I had to compete in the 'real world.' Now I know that disability is a part of who I am and young people need to know that, too." This realization, Kemp says, makes it possible for disabled people to compete to the best of their abilities without denying their disabilities. Linda Carpenter, 27, who has a congenital disability, says that during her childhood, disabled role models were simply not available. Carpenter, though, says the lack of available "heroes" in the disabled world did not leave her isolated or without resources. "It made me more mainstreamed, and I'm glad I was mainstreamed," she says. "I didn't really think it was a bad thing to be like everybody else." Carpenter learned that she could relate normally to ablebodied people. "I broke a lot of braces jumping off things like the other kids," she says. In her 20s, and for reasons she doesn't yet understand, Carpenter initiated more relationships among her disabled peers. "I found some people I wanted to be friendly with, I suppose," she says. The need for guidance and camaraderie she responded to extends from people growing up with disabilities to people whose disabilities are acquired later in life. SUBCULTURES, MULTICULTURES When Detroit writer Clark Iverson developed epilepsy 16 years ago at age 20, he had no idea, he says, of the existence of disability culture. "I grew up thinking one way, and I was forcibly made to think another way," Iverson says. "I've become aware [of disability culture] gradually, over the past 10 years or so." Iverson's epilepsy is normally unnoticeable, so his involvement has come in spite of nondisabled friends who are puzzled by his attraction to disability issues. His primary commitment has been political, he says; most of disability culture is something that "falls under the heading of one of the things in life I haven't had time to pursue." He doubts that he'll become actively involved in other aspects of disability culture, a concept that to him is self- limiting anyway; he does not think such a large and diverse group can bond effectively. Congenital amputee Michael Paul of Warren, Mich., takes Iverson's doubt one step further; he says disability culture, while a trendy concept, has had little impact on his life. He doesn't believe any sort of true disability culture can exist at all. "The fact that there are nondisabled people in the world makes it impossible," Paul says. "We're not living on a gimp desert island. A leper colony is the closest we can come to disability culture--disability subculture maybe." Instead of pursuing disability culture, Paul says, disabled people should simply accept themselves and work on making mainstream culture accept our differences and appreciate our similarities. This concept is not necessarily at odds with disability culture, says Brown. "Everybody is a part of different cultures," he says. "It's one more way to define yourself." There is no consensus that I have found on what will happen to disability culture. Nobody can predict the development of a trend in its embryonic stages and, for now, that is precisely where disability culture is. It remains an inexact and distinctly flawed concept; hard to define, hard to find, hard to spread. Within in are any number of branches; it is, most say, about pride, and we can demonstrate our pride in many different ways. But you don't have to define disability culture to notice it, to understand it or to crave it. I suppose the worst fear of my Yiddeshe mama has been fulfilled; I have found another heritage to identify with. Just as surely as I want to visit Jerusalem, I want to make a pilgrimage to Berkeley--to see the first stirrings of the independent living movement. I apply myself to the history of ADAPT the way my grandfathers read the Talmud. But as I bring disability culture into the stew of unlikely things that produced who I am, it becomes less urgent and all-encompassing. Probably, it will eventually settle in next to all the other words I use to define myself: Jewish, Italian, female, brunette, whatever. It will become another part of my personality, integral but not overwhelming. I went to my parents' house a while back to visit my mother, newly home from a jaunt to Israel. She was on a heritage kick, humming the Israeli anthem, brandishing a copy of the Jerusalem Post and handing out Hebrew name necklaces left and right. "Here," she said, tossing one over my head. "So you don't forget who you are." I put it on; it was pretty and would help any Hebrew-speakers who wonder who I am. "You know, ma," I said, "I am still Jewish." She waved that off, and leaned down to me. "Just remember," she murmured, "where you come from." Because it isn't until you know where you're from that you can figure out where you're going--as a disabled person or as anything else. Miriam Braunstein lives with a progressive neuromuscular disease, roomies and no regrets in Detroit. "Reprinted with permission of New Mobility, the magazine of disability lifestyle, culture and resources. Copyright 1997. For information on New Mobility, or to subscribe, call 800/543-4116." "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 audio cassette tape. Write: MAINSTREAM, 2973 Beech Street, San Diego, CA 92102. "NIGHT SCREAMS" by Steven E. Brown I lie remembering. I was a teenager. All pain. My pain was all pain. All pain was my pain. I lie remembering. Laying in the field kiddy-corner from our house. Watching the dragonflies. Imagining interplanetary travel. Daydreams. Not too many night screams. Not yet. I lie remembering. My gangling body. Draped over chairs, couches. Upside down. Potato chips and Dr. Pepper. Bags of potato chips. Six packs of Dr. Pepper. Downed easily. One setting. No need to get up. Just continue reading, watching TV. Upside down. Watching the world with my head on the floor. My most comfortable position. I lie remembering. Torturous nights. Excruciating days. Once I slept for thirty-six hours. I woke every once in a while. But I lie in a hide-a-bed in the middle of the living room. Surrounded by people, TV, noise. Better to sleep; to escape. The pain of the house. The pain of the room. The pain of the body. Numbing. I lie here remembering the numbing, mind-succumbing, all-encompassing pain. Twisted bones. Joints out of place. Bone infarctions. That's what they call it now. When I was a kid we called them "attacks." It fit. It felt right. My body attacked me. Left me wounded; needing time to recover. I wrote once about such an episode. Early in my career as a writer. Thinking everything I had to say, to report, was worthy. Years later, this diary of an "attack" was trimmed down and published in the newsletter of my own "dis-ease of the week." I called it "Hidden Treasure." Even then I was storytelling. But that ended with an optimistic beat. We don't know yet how this will end. But we (or at least I) do know what comes next. Swelling joints. When I had an "attack;" now they're called "bone crises," truer, better, and yet somehow missing something for this particular piece, my specific joint in peril, almost always, at first, my knee, would swell to three times its normal size. No weight-bearing was possible. Movement of any kind caused excruciating, undulating waves of pain. No movement was just as bad. Constant, pounding, searing, pervasive pain. But I could not lie in my bed, alone, all day and all night. I did not know any esoteric, medical, or philosophical reasons why. I just knew I could not lie in my bed, alone, all day and all night. I had to move. Ah, there, was the rub. Moving. Slowly. Excruciatingly. Painstakingly. Painfully. Once I counted. Literally. The minutes to move. Laying to sitting. Sitting to standing. Standing to moving. Over half-an-hour. I am not making this up. I am not attributing to memory something that did not happen. I am writing this because so few do. But I am not the only one. There are others. My pain is not my pain alone. My pain is not all pain. I lie. I decide to get up. To go to the bathroom. To go to bed. To get something to eat. To see another room. To do something. I decide to get up. Now I get up. No, this is not an unconscious movement. This is very conscious, deliberate. It must be. It will happen no other way. I decide to get up. I decide to get up. I decide to get up. Okay, I have decided to get up. I move. I scream. I hurt. Maybe I won't get up. I am paralyzed with pain. Okay, I have decided to get up. Okay, I have decided to get up. Okay, I have decided to get up. I move. I scream. I hurt. I will get up. I will get up. I will get up. I move. I move. I move. My body begins to move with me. All of it. Except the knee. Slowly, deliberately, tenderly, consciously, painstakingly, carefully, cautiously, I lift my knee. I move it alongside me. I place it with the rest of my body. I drag it to a sitting position. I exhale. I rest. I sweat. I am exhausted. I hurt. I curse. I breathe. I hurt. I curse. I breathe. I hurt. I curse. I decide to stand. I decide to stand. I decide to stand. Okay, I have decided to stand. I move. I scream. I hurt. Maybe I won't stand. I am paralyzed with pain. Okay, I have decided to stand. Okay, I have decided to stand. Okay, I have decided to stand. I move. I scream. I hurt. I will stand. I will stand. I will stand. I move. I move. I move. My body begins to move with me. All of it. Except the knee. Slowly, deliberately, tenderly, consciously, painstakingly, carefully, cautiously, I lift my knee. I move it alongside me. I place it with the rest of my body. I drag it to a standing position. I exhale. I rest. I sweat. I am exhausted. I hurt. I curse. I breathe. I hurt. I curse. I breathe. I hurt. I curse. I decide to move.. I decide to move. I decide to move. Okay, I have decided to move. I move. I scream. I hurt. Maybe I won't move. I am paralyzed with pain. Okay, I have decided to move. Okay, I have decided to move. Okay, I have decided to move. I move. I scream. I hurt. I will move. I will move. I will move. I move. I move. I move. My body begins to move with me. All of it. Except the knee. Slowly, deliberately, tenderly, consciously, painstakingly, carefully, cautiously, I lift my knee. I move it alongside me. I place it with the rest of my body. I drag it alongside me as I move. I exhale. I rest. I sweat. I am exhausted. I hurt. I curse. I breathe. I hurt. I curse. I breathe. I hurt. I curse. I arrive. I am exhausted. I hurt. I curse. I breathe. I hurt. I curse. I breathe. I hurt. I curse. I await the next time I need to move. I can wait for a long time, I think. But, of course, I cannot. Reprinted with permission from the author, Steven E. Brown 1997. "PAIN TABLETS" by Steven E. Brown No, not those sterile "pain pills" advertised on daily TV; Not even those narcotics you can pick up from the local pharmacy, and, if you've got a sympathetic doctor, you can get as many of those as your little heart desires; No, not "Mother's Little Helper's"--real pain, perhaps, but not my pain; No, not even those narcotics, barbiturates, amphetamines, synthetic drugs so commonplace nowadays in ghettos, suburbs, and Halls of Congress. I'm talking about real PAIN TABLETS. I'm talking about the pain I see on my wife's face when she says she just "wrenched her hip." I'm talking about the pain that takes her breath away when she arises from chaircouchbedcar and says she can't take a step because of the way her ankle feels. I'm talking about effective PAIN TABLETS. I'm talking about the pain I recall from my youth when I would arise from couchchairbed and take an hour or more to go from sitting to standing to being able to move-- I'm talking about using crutches, wheelchair, canes, other people. I'm talking about the pain I remember from when I was very small and would painstakingly, slowly, agonizingly crawl all over our house because the jarring pain of being lifted and carried by my parents was too terrifying, too painful, too much, too unspeakable. I'm talking about PAIN TABLETS that could erase my memory of these events I'm talking about PAIN TABLETS that would erase my wife's twisted face reflecting her twisted bones and joints. I'm talking about PAIN TABLETS that don't mask the pain, that don't mask the symptoms, that don't play with the endorphins, with my psyche. I'm talking, I'm pleading for PAIN TABLETS that actually, literally erase obliterate remove wipe from all memory THE PAIN. Please. Reprinted with permission from the publisher, Institute on Disability Culture 1996. A CELEBRATION OF DIVERSITY: AN INTRODUCTORY, ANNOTATED BIBLIOGRAPHY ABOUT DISABILITY CULTURE by Steven E. Brown, Ph.D. Institute on Disability Culture 2260 Sunrise Point Rd. Las Cruces, NM 88011 DISCULTURE@aol.com http://www.goodnet.com/~onaroll/culture.html Copyright 1997, Institute on Disability Culture, All Rights Reserved The idea of celebrating disability, a condition historically viewed from tragedy to deviance to incompetence, remains mostly unbelievable to a society guided by precepts of medical practice which convey the belief that the only positive solution to disability is repair or cure. The most popular current-day view of disability is molded by what many disabled people consider the scourge of the late twentieth century--telethons. Telethons have generated great controversy for the past decade or so. Entertainer Jerry Lewis has become one focal point of this conflict. Several years ago Lewis spent some time in a wheelchair to see what it was like. He wrote about his experiences in Parade. His comments were so disparaging that two advocates with Muscular Dystrophy formed a group called, "Jerry's Orphans," to sponsor annual Labor Day demonstrations to protest Lewis' demeaning approach to disability. The two combatants have waged a public battle, which led to a 1993 article in Vanity Fair. Paul Longmore, a historian with a disability known for his studies of the media and telethons, described the impact of telethons on the American public. Four major telethons--Easter Seals, the Arthritis Foundation, United Cerebral Palsy, and the M.D.A.--are the single most powerful cultural mechanism defining the public identities of people with disabilities in our society today, mainly because they reach so many people....The telethon sponsors claim that, collectively, they have a combined audience of 250 million people. That's the equivalent of the population of this country. The message of telethons is that whatever condition people with disabilities have, that condition has essentially spoiled their lives, and the only way to correct that is to cure them. The message of the disability-rights movement is that it's possible to be a whole person with a disability. (Bennetts, 1993, 92) The final two sentences of Longmore's analysis form a precise description of the models of charity and celebration of disability that have emerged in the late twentieth century. Several scholars have endeavored to explore these models through the development of paradigm charts, such as my own "The Chart: Disability Rights/Culture/Pride Paradigm." Perhaps the simplest way to describe disability culture is to exclaim pride in the condition of disability. Dianne B. Piastro is a middle-aged woman with a disability. She was once a nondisabled adult. Her experiences in becoming disabled from Multiple Sclerosis created a desire to write. Since the mid-1980's, Piastro has published a syndicated newspaper column called "Living with a Disability." In a July 18, 1993 column, she wrote: Contrary to what you may think, disability culture is not new. It has always existed. But it is the people who know they are well-centered and valuable because they have a disability, not in spite of it, who will bring it into America's consciousness. Some of those individuals who have recognized value in the experience of disability have been posing questions about the culture of disability for much of the past decade. The first recorded work exploring this issue occurred at the 1984 Conference of the Association on Handicapped Student Service Programs in Post-Secondary Education (AHSSPPE, recently changed to Association on Higher Education and Disability, or AHEAD). The presenters, David Pfeiffer of Suffolk University and Andrea Schein of the University of Massachusetts-Boston, each asked "Is There a Culture of Disability?" Their affirmative responses were published in the Association's Proceedings. In the decade since Pfeiffer and Schein first posed the question about the existence of a disability culture, answers began slowly, then escalated. For most of the 1980s the question was rarely pondered. When it was raised it most often came in the form of tentative queries or explorations in little-known disability-oriented magazines or in thundering nos from the halls of academia. The discussion about a culture of disability has changed considerably in the 1990s. A plethora of activity has emerged in literature, art, history, music, movies, and other arenas. Two national bodies have recently recognized disability culture activities for the first time. The National Institute on Disability Rehabilitation and Research (NIDRR) funded my 1993-1994 fellowship proposal to conduct research about disability culture and the National Endowment for the Arts recognized another leading proponent of the culture, Cheryl Marie Wade, with an Arts Solo Theatre Artist's Fellowship in 1994. As the number artists, writers, scholars, and advocates of disability culture grow, so too does the need for an exploration of what is already available. The mushrooming examples seem endless. The field of disability writing is not an easy one to assess, or to access. Books about the subject of disability, and disability culture, are to be found in diverse sections of libraries and bookstores. In the past year, I have taken to wandering into new bookstores and inquiring about a disability section. A few have such a beast, but what one finds in it ranges from self-help books to autobiographies to disability-specific stories to a conglomeration of other topics. Any of these subjects might be found in other sections as well. To further complicate matters, some of the best information about disability, and disability culture, is found in neither books nor journals, but in newsletters, brochures, fliers, and other kinds of media that are difficult to locate in any systemic way. The result of this miscellany of materials has been an attempt on my part to read, view, hear, and locate all I could. But in this process, I have overlooked journal articles, missed books, and certainly missed much of what is out there to be found about disability culture. This would apply to movies, music, and media as well. The most complete bibliography published thus far is in my manuscript resulting from the NIDRR fellowship, Investigating a Culture of Disability: Final Report. It includes a total of more than 250 citations, including 65 books; 24 anthology articles; 99 magazine and journal articles; 20 newspaper and newsletter articles; 11 unpublished manuscripts; 50 films; 5 musical entries; and, 8 cultural artifacts, including comics, calendars, and a poster. Yet, this too, is only a selected bibliography, highlighting some of the most important of the present 1249 citations entered into twenty-four computer database categories of "Books: Non-fiction;" "Books: Fiction;" "Fiction: Short Stories;" "Books: Photography;" "Books: Poetry;" "Poetry: Tapes;" "Poems;" "Books: For Children;" "Articles from Anthologies;" "Journal, Magazine and Newspaper Articles: Non-Fiction;" "Newspapers, Newsletters;" "Monographs;" "Unpublished Works;" "Letters:" "Films;" "Videos;" "Radio;" "Music: Tapes/Compact Discs;" "Music: Songs;" "Comics;" and, "Cultural Artifacts: Calendars, Catalog, and Posters;" as of this writing. The annotated, disability culture bibliography which follows is an introductory, idiosyncratic effort, reflecting my own personal tastes, biases, and knowledge. BOOKS: NON-FICTION: Baldwin, James, No Name in the Street (New York: Doubleday, 1972). An exploration of events affecting black America in the late 1960s and early 1970s, this work is particularly relevant to themes of disability culture because its concluding words about the development of a positive black culture echo the disability rights movement's evolution from political equality to personal and community pride. Berkowitz, Edward D., Disabled Policy: America's Program for the Handicapped (Cambridge: Cambridge University Press, 1987). A look at the beginnings of twentieth-century disability programs; the author argues there is in reality no policy, which has been costly for America and Americans with disabilities. The history of Worker's Compensation and Social Security is explored in detail. Bowe, Frank, Changing the Rules (Silver Spring, MD: TJ Publishers, 1986). An autobiographical examination of the early years of one of the United States' most influential policy advocates with a disability, particularly riveting in discussing Bowe's pre- adolescent years coping with deafness. See also, Handicapping America: Barriers to Disabled People (New York: Harper & Row, 1978), an exploration of how society handicaps its members with disabilities, and Rehabilitating America: Toward Independence for Disabled and Elderly People (New York: Harper & Row, 1980), with an emphasis on the economics of disability. Brown, Christy, My Left Foot (Martin, Secker & Warburg, Ltd., 1954). An Irish autobiography, which is effective and moving in describing growing up with a non- verbal disability and the connections, and lack thereof, made in Brown's life. Brown, Steven E., Independent Living: Theory and Practice (Las Cruces, NM: Institute on Disability Culture, 2260 Sunrise Point Rd., 1994). An exploration of the theoretical constructs and daily work of independent living programs. See also, Investigating a Culture of Disability: Final Report (Las Cruces, NM: Institute on Disability Culture, 1994), containing a brief description of Americans' perceptions about disability and the first in-depth exploration of a cross-disability culture of disability. Brown, Susan T., ed., An Independent Living Approach to Disability Policy Studies (Oakland, CA: World Institute on Disability, 1993). A compilation of essays looking at the new field of disability policy studies, many first delivered at the Society for Disability Studies Annual Conference in 1993, with an introduction by Irving Kenneth Zola and a bibliography by David Pfeiffer. Browne, Susan E., Debra Connors, Nanci Stern, eds., With the Power of Each Breath (Pittsburgh and San Francisco: Cleis Press, 1985). A powerful anthology depicting women's views about life, disability, anger, activism, belonging, and many other topics. Bullard, David G. and Susan E. Knight, eds., Sexuality and Physical Disability: Personal Perspectives (St. Louis, C.V. Mosby, 1981). Personal stories about sexuality and disability; a topic still rarely addressed in depth fifteen years later. Callahan, John, Don't Worry, He Won't Get Far on Foot: The Autobiography of a Dangerous Man (New York: Vintage, 1989), a life story about the dissatisfactions and satisfactions of life before and after alcoholism and disability which comes across to many as strikingly realistic, and, naturally includes many wonderful cartoons. Also available in chronological order and all published by the New York firm of William Morrow are the following compilations of Callahan's cutting-edge cartoons: Do Not Disturb Any Further (1990), Digesting the Child Within (1991), Do What He Says! He's Crazy (1992), The Night They Say, Was Made for Love plus My Sexual Scrapbook (1993), What Kind of God Would Allow a Thing Like This to Happen?!! (1994), and, most recently, a fairy tale, The King of Things and the Cranberry Clown (1994), which is not about disability--or is it? During, Simon, ed., The Cultural Studies Reader (London: Routledge, 1993). Although disability almost never appears in this anthology of twenty-nine articles about cultural studies, the discussion of culture and cultural studies in the "Introduction," and the content of many of the articles offers a good grounding in why many individuals and groups so easily identify with a culture of disability, as well as why others might not. Ferguson, Philip M., Abandoned to Their Fate: Social Policy and Practice toward Severely Retarded People in America, 1820-1920 (Philadelphia: Temple, 1994). An analysis of why institutions for people with mental retardation assumed premier significance in the American imagination, (even though most individuals who were mentally retarded did not reside in them), resulting from the need for institutional administrators to promote their own welfare, both economically and professionally. Finger, Anne, Past Due: A Story of Disability, Pregnancy, and Birth (Seattle: Seal, 1990). A compelling writer recounting her discovery of her pregnancy, how it impacted her perception of herself as a woman with a disability and then discovering anew life as the mother of a child with a disability. Gallagher, Hugh Gregory, By Trust Betrayed: Patients, Physicians and the License to Kill in the Third Reich (New York: Henry Holt, 1990). The story of the Holocaust commencing with the genocide of people with disabilities is terrifying enough, but what sticks with me is the post-Nazi era (that is, now) of former Nazi physicians, among others, continuing to promote the theoretical foundations that led to that genocide and the pervasive, ongoing practice of "mercy-killing" of people with disabilities around the world. See also, FDR's Splendid Deception (New York: Dodd, Mead, 1985), the first work to examine seriously FDR's disability and the impact it had on his life. Historians and other scholars who acknowledge Gallagher's contribution to understanding FDR still tend to skip over the effect of his disability, seeing it as a hurdle he overcame or a path to identification with the "common American," despite a multitude of evidence that his post-polio disabilities were far more complex and significant. Hevey, David, The Creatures Time Forgot: Photography and Disability Imagery (London: Routledge, 1992). An outstanding achievement. The best work describing the telethon mentality and its deleterious effects on disabled people. Expensive, because of the photographs, but well worth it. Ingstad, Benedicte and Susan Reynolds Whyte, eds., Disability and Culture (Berkeley: University of Berkeley, 1995). Fourteen essays by twelve authors, all anthropologists, including five essays by the editors, discuss perceptions about disability in primarily non-Western cultures. This is one of the best books around depicting disability with an international perspective, but it also is problematical because of its lack of inclusion of many authors with disabilities or from the cultures discussed. A more in-depth critique is found in my "Deviants, Invalids, and Anthropologists: Cross- Cultural Perspectives on Conditions of Disability in One Academic Discipline: A Review of Disability and Culture," Disability and Rehabilitation: An international, multidisciplinary journal, 18 (5) (May 1996), 273-75. Kailes, June Isaacson, Disability Pride: The Interrelationship of Self-Worth, Self-Empowerment, & Disability Culture (Houston: Independent Living Research Utilization, 1993). A workbook about disability culture by one of the premier trainers in independent living today. Keith, Lois, ed., "What Happened to You?" Writing by Disabled Women (New York: New Press, 1994). An English anthology which does an excellent job of combining academic and non-academic writing. Kingsley, Jason and Mitchell Levitz, Count Us In: Growing Up with Down Syndrome (San Diego: Harvest, 1994). The disability rights movement has been criticized at times for being too focused on people with physical impairments. But at the very least, it has enabled others to enjoy the fruits of its labors. Two young adults with Down Syndrome have published a wonderful, honest, and funny book, based on several years of conversations, primarily with their parents. Kleinfield, Sonny, The Hidden Minority: A Profile of Handicapped Americans (Boston: Atlantic Monthly Press, 1979). An early book about the disability rights movement, which in many ways presages Shapiro's No Pity. In-depth explorations of Berkeley, East Lansing, and an accessible area in New York City. Although Kleinfield seems to understand the issues, he remains paternalistic, reflecting his times. Klobas, Lauri, Disability Drama in Television and Film (Jefferson, N.C.: McFarland, 1988). A excellent compilation, with descriptions rather than analyses. Still the only book of its kind. Lorde, Audre, Sister Outsider: Essays and Speeches (Freedom, CA: Crossing Press, 1984). Like Baldwin's No Name in the Street, Lorde discusses black, feminist, and lesbian issues in ways that sound like someone involved in the disability rights movement. Her ideas about oppression are especially thought-provoking. Mairs, Nancy, Waist-high in the World: A Life Among the Nondisabled (Boston: Beacon, 1996). This is a break-through book. A woman with Multiple Sclerosis who distinctly does not like her disability, but who accepts and thinks about it and how society impacts people with disabilities writing about it for the general public. I read a lot about Mairs before I read her. Descriptions tended to paint her as a "whining cripple." But, once I started reading her, I found a forthright thinker and writer who sifts through cycles of disability as well as other aspects of her life. See also Carnal Acts: Essays (Boston: Beacon, 1996), Ordinary Time: Cycles in Marriage, Faith and Renewal (Boston: Beacon, 1993), Plaintext (Tucson: Arizona, 1986), Remembering the Bone House: An Erotics of Place and Space (Boston: Beacon, 1995, 1st published 1989), and Voice Lessons: On Becoming a (Woman) Writer (Boston: Beacon, 1994). Milam, Lorenzo Wilson, Crip Zen: A Manual for Survival (San Diego, CA: Mho & Mho Works, 1993). Milam's inimitable style is brought to play discussing and rendering advice about wide range of topics concerning living with a disability, from travel to drugs to literature to sex. See also, The Cripple Liberation Front Marching Band Blues (San Diego, CA: Mho & Mho Works, 1984), an autobiographical exploration of being at Warm Springs Rehabilitation Center post- FDR and learning about life, love, disability, sexuality, and passion. A hard read for many-- Milam does not mince words--but worth the effort. Miller, Vassar, ed., Despite This Flesh: The Disabled in Stories and Poems (Austin: University of Texas Press, 1985). An uneven, but interesting, compilation of short stories, poetry, and essays. Moore, Frank, Art of a Shaman (Available from inter-relations: PO Box 11445, Berkeley, CA 94712, 1991). Frank Moore is a Berkeley performance artist who is a mostly unsung treasure of the disability arts and culture movement. Although his proclivity for nudity in performances and videos will repel some, his compilation of a fairly recent lecture, the Art of a Shaman is the only American work I know of that approaches Hevey's sophistication of exploration of complex issues. Murphy, Robert, The Body Silent (New York: Henry Holt, 1987). Murphy's status as a respected anthropologist and a person living with, and then dying from, an acquired disability combined to make him an authority about disabling conditions. Unfortunately, he sometimes tends to be presented as the authority. Most disturbing is the assumption that what Murphy had to say in the late 1980s would stand unchanged in the mid- 1990s. Murphy's own description of the liminal status of disability might just as aptly apply to his own work--standing at the crossroads between perceptions of disability as a negative condition making it difficult to function in society and today's refined idea of disability as a natural process of life which is not only not completely negative, but has characteristics non- disabled society could benefit from emulating. Nagler, Mark, ed., Perspectives on Disability, 2nd ed. Palo Alto, CA: Health Markets Research, 1993). This second edition of Perspectives on Disability is an excellent compilation of fifty-three articles, many reprinted from other sources, discussing identity, society, family, sexuality, medicine, education, and legal issues, among others. Panzarino, Connie, The Me in the Mirror (Seattle: Seal, 1994). Very interesting autobiography about growing up with a disability prior to the advent of the disability rights movement, being a part of that movement's beginnings, and how it transformed the author's life. Scotch, Richard K., From Good Will to Civil Rights: Transforming Federal Disability Policy (Philadelphia: Temple, 1984). A detailed examination of the protests and demonstrations leading to the promulgation of 504 regulations. Shapiro, Joseph P., No Pity: People with Disabilities Forging a New Civil Rights Movement (New York: Times Books, 1993). A journalist's account of the development of the disability rights movement: the personal stories are the strongest aspects of the work, the analysis of how disability rights fits into and compares with the patterns of other movements are the weakest portions. Shaw, Barrett, ed. The Ragged Edge: The Disability Experience from the Pages of the First Fifteen Years of the Disability Rag (Louisville: Advocado, 1994). Much of the discussion about disability culture in the 1980s occurred in the pages of the Rag. This is a compilation of forty-seven articles and poems, some of which specifically address a culture of disability; many others describe the culture itself in discussions including sexuality, suicide, and community. Shilts, Randy, And the Band Played On: Politics, People, and the AIDS Epidemic (New York: St. Martin's Press, 1987). The late author's book reads like a detective novel, integrating the search for what caused the AIDS virus, how it spread, and how it might be cured, with the machinations of public policy and professional rivalries across the world. But the focus remains on those impacted by AIDS and their place in a brand-new world, one in which HIV becomes first deadly, then disabling. Snow, Judith A., What's Really Worth Doing and How to Do It: A Book for People Who Love Someone Labeled Disabled (Toronto: Inclusion, 1994). As a young child, Snow dreamed of being a truck-driver, an unrealistic goal considering her disability. But the fantasy, it turns out, was not so much about driving a truck as being mobile and, as she discusses how she has traveled all over the world, she offers tips for others to be able to follow their dreams. Wade, Cheryl Marie, ed., Range of Motion: an anthology of disability poetry, prose and art (Albany, CA: Minuteman, a KIDS Project/Squeaky Wheels Press, Box 448, Berkeley, CA 94701-0448, 1993). Wade is a performance artist who has become one of the most well-known of the recent crop of disability culture advocates. She has edited several anthologies. The most recent is chock full of poignant writing. It introduced me to Frank Moore and many other artists. Winston, Charlie, America's Telability Media (Available from Telability Media, PO Box 1488, Columbia, MO 62505-1488). Marketing tool and reference guide with more than 500 media resources that reach the disability community and the rehabilitation profession. Each entry contains detailed information. Zola, Irving Kenneth, Missing Pieces: A Chronicle of Living with a Disability (Philadelphia: Temple, 1982). This spellbinding account of time spent in Het Dorp, a housing cooperative in the Netherlands, is Zola's coming out as an activist with a disability and a member of the community of people with disabilities. See also, ed., Ordinary Lives: Voices of Disability and Disease (Cambridge: Apple-wood, 1982), an early compilation of fact and fiction. BOOKS: FICTION: Dunn, Katherine, Geek love. (New York: Warner, 1989). The life of a circus family, whose mother has ingested all kinds of drugs and done whatever she could to give birth to "freaks" who will keep people coming to the bigtop. Very graphic and at times difficult to read, but realistic in looking at how what we would today call people with disabilities could find community in this setting. Finger, Anne, Bone Truth (Minneapolis: Coffee House Press, 1994). The main character is an artist with a disability who is becoming reconciled to her past, a radical family with an abusive father, and her present as a woman with a younger lover who has just discovered her pregnancy. Gilman, Charlotte Perkins, The Yellow Wallpaper (New York: Feminist Press at City University of New York, 1973). A nineteenth century short story that brings the reader into a world of mental unbalance and oppression of women. Groom, Winston, Forrest Gump (New York: Pocketbooks, 1994, 1st published 1986). Quite different than the Oscar-winning movie, the novel is rougher, Forrest is not as smart, as smooth, as naive, or quite as lucky in love. Heinlein, Robert, Waldo & Magic, Inc. (New York: Del Rey, 1986, 1st copyrighted, 1940, 1942, 1950). This science fiction writer, who had a disability, wrote Waldo, a novella, about a character with Myasthenia Gravis, who lives in space to become nondisabled when freed from gravity. Shelley, Mary, Frankenstein, or the Modern Prometheus (First published 1818). The "monster" battles isolation, searches for companionship, and community. Is he a person with a disability? Stewart, Jean, The Body's Memory (New York: St. Martin's Press, 1989). The first novel that captures the spirit and reality of the disability rights movement as a young woman comes to terms with cancer and its aftermath. Trumbo, Dalton, Johnny Got His Gun (New York: Bantam, 1967). An anti-war novel about a man who, after his wounds in battle, can move only his eyes. BOOKS: PHOTOGRAPHY Gans, Lydia, To Live with Grace and Dignity (Horsham, PA: LRP Publications, 1994). A look at people who use personal assistance services in the Berkeley area. Photographs are accompanied by essays about both the person with the disability and their assistants. Hekking, Angelina M. A., Seeds of Light: Images of Healing, Self-Portraits (San Francisco, Angel, 1990). A woman with Multiple Sclerosis takes us on a journey exploring her disability through photography and diary entries. BOOKS: POETRY: Brown, Steven E. Pain, Plain--and Fancy Rappings: Poetry from the Disability Culture (Las Cruces, NM: Institute on Disability Culture, 1995). Autobiographical and imaginative poems looking at living with pain, participating in disability rights activism, and celebrating the culture of disability. See also Voyages: Life Journeys, Poems by Steven E. Brown (Las Cruces, NM: Institute on Disability Culture, 1996). Dykes, Disability, & Stuff, "The Poetry Special," (Boston: Women's Educational Fund, 1994). Dykes, Disability, & Stuff is a little-known newsletter specifically geared to lesbians with disabilities. This is an audiotape compilation of some poems previously printed in the newsletter. Hershey, Laura, Dreams of a Different Woman: New Poems by Laura Hershey (Denver: Dragonfly, PO Box 9004, 1994). Poems about being a woman, being disabled, and life. See also, On the Lawn: Nairobi Women's Conference Poems (Denver: Dragonfly, 1994), and, In the Way, ADAPT Poems (Denver: Dragonfly, nd). Also available on tape. ARTICLES: JOURNALS AND MAGAZINES Backman, Eric, "Amazing Grace," Mainstream: Magazine of the Able-Disabled, 18, (10), (Aug. 1994), 40-43. Story about Grace Lin, artist, dancer, and current coordinator of the World Institute on Disability's quarterly art shows. Bennets, Leslie, "Letter from Las Vegas," Vanity Fair, (Sept. 1993), 82, 84, 86, 90, 92, 94, 96, 98. Discussion of the Muscular Dystrophy telethon. See narrative for more detail. Braunstein, Miriam, "In Search of Disability Culture," New Mobility: Disability Lifestyle, Culture & Resources, 8 (41), (Feb. 1997), 29-33. A student's excellent description of positive and negative reactions to the concept of disability culture. Brown, Steven E., "Creating a Disability Mythology," International Journal of Rehabilitation Research, 15, (Winter 1992), 227-33. A look at creating a positive mythology about disability, begins with an exploration of people with disabilities as heroes. See also, "I Was Born (in a Hospital Bed)--When I Was Thirty-One Years Old," Disability and Society, 10, (1), (1995), 103-110, an awakening to a positive life as a person with a disability, "Movies Stars and Sensuous Scars," MAINSTREAM: Magazine of the Able-Disabled, 21 (5), (Feb. 1997), 26, 28, 3, a look at sexuality, love, and disability, "Super Duper?" MAINSTREAM: Magazine of the Able-Disabled, 21 (2) (Oct. 1996), 28-31, excerpts of an e-mail conversation discussing Christopher Reeve's appearance at the 1996 Democratic National Convention, "The Ten Commandments of Independent Living," This Brain Has a Mouth, (July/August 1992) 20-21, a mandate for the times, "We Are Who We Are... So Who Are We? MAINSTREAM: Magazine of the Able-Disabled, 20 (10), (Aug. 1996), 28-30, 32, an attempt to begin defining disability culture, with Lillian Gonzales Brown, "Death & Life," MAINSTREAM: Magazine of the Able-Disabled, 20 (1), (Sept. 1995), 29-31, how AIDS has affected one disabled person's life, "The Walkout," Disability Rag, 6, (9), (September 1985) 39- 40, a description of putting our jobs on the line over the issue of people with disabilities running our own organizations, Disability Studies Quarterly 15 (4), (Fall 1995), guest edited by Brown, and "The Chart: Disability Rights/Culture/Pride Paradigm," (Las Cruces, NM: Institute on Disability Culture, 1995). Epstein, Susie, "Am I Crip Enough Yet?" Mainstream: Magazine of the Able-Disabled, 19 (8) (May 1995), 15-19. An excellent article discussing what makes someone disabled, both in their own perceptions and from those of outsiders. Gill, Carol J., "Continuum Retort--Part II," Disability Rag & ReSource, 15, (2), (March/April 1994), 3-7. The most consistent voice promoting the concept of a culture of disability from the mid-1980s til the early 1990s, Gill discusses the need to recognize a separate disability identity. See also, "Disability and the Family," Mainstream: Magazine of the Able-Disabled, 18, (5), (Feb. 1994), 30-35, "Dual Citizenship & Conditional Acceptance," Disability Rag, 13, (3), (May/June 1992), 12-13, "What the Doctors Didn't Want to Know," Disability Rag, 13, (3), (May/June 1992), 11- 13, and "When is a Woman Not a Woman?" Disability Rag, 13, (3), (May/June 1992), 26-27, all of which explore the themes of people with disabilities interacting in a society geared to non- disabled people. Golfus, Billy, "The Do-Gooder," Disability Rag, 11, (4), (July/Aug 1990), 14-18, 19. Before the video, "When Billy Broke his Head..." were articles, including this indictment of the helping professional and the helping professions. See also, "The Trouble with Do-Gooders," Mouth, V, (3), (Sept/Oct 1994), 6-10. Groch, Sharon A., "Oppositional Consciousness: Its Manifestation and Development, The Case of People with Disabilities," Sociological Inquiry, 64, (4), (November 1994), 369-95. A discussion of the development of disability consciousness from the viewpoint of opposing typical societal institutions. Gwin, Lucy, "The Myth of Rescue," Mouth, V, (3), (Sept/Oct 1994), 4-5. The Mouth editor wondering why people with disabilities are waiting for others to make our lives better when that is not the historical pattern we have encountered. See also, "Facing the Dragon," Mouth, V, (5) (Jan-Feb 1995), 10-11, and "Who we are not," New Mobility: Disability Lifestyle, Culture & Resources, 5, (18), (Nov-Dec 1994), 32-34. Hahn, Harlan, "The Los Angeles Uprisings of 1992: A Disability Perspective," Disability Studies Quarterly, 13, (1), (Winter 1993), 80-84. A fascinating approach to combining a disability perspective with a glimpse at urban revolts in general and this one in particular. Hershey, Laura, "Pride," Disability Rag, 12, (4), (July/Aug 1991), 1, 4-5. A look at why there is a need to develop and maintain a disability pride and how difficult it can be at times. Hirsch, Karen, "Studying Culture," Disability Rag, 8, (3), (May/June 1987), 38-39. An early editorial discussing the need for recognizing and studying a culture of disability. Hooper, Ed, "A Question of Cure," Disability Rag, 9, (1), (Jan/Feb 1989), 18-21. If a cure were offered, would a person with a disability take it? This question, often perceived as the cornerstone of one's pride, was posed by one of the first writers to discuss community. See also, "Seeking the Disabled Community," Disability Rag, 6, (8), (Aug 1985), 1, 4-6, 8. Johnson, Mary, "EMOTION AND PRIDE," Disability Rag, 8, (1), (Jan/Feb 1987), 1, 4-10. This is the big one for many! A plea to recognize and develop pride in a community of people with disabilities. Carol Gill is quoted liberally throughout about how we must reconcile ourselves emotionally to disability and celebrate ourselves as people with disabilities. Kaltenheuser, Skip, "Hugh Gallagher: ADA's Hidden Architect," New Mobility: Disability Lifestyle, Culture & Resources, 6,(23) July-Aug. 1995, 40-43. A look at Gallagher's role as writer, historian, and policy maker who paved the way for the Architectural Barriers Act of 1968. Lathrop, Douglas, "Johnny's Song," Mainstream: Magazine of the Able-Disabled, 17, (8), (May 1993), 12-18. A discussion of the disability pride songs of Johnny Crescendo and the meaning of a culture of disability. Linton, Simi, "Teaching Disability Studies," Disability Studies Quarterly, 14, (2), (Spring 1994), 44-46. At the Society for Disability Studies Annual Conference in 1993, Linton and others discussed the need for a definition of disability studies for the 1990s. This article includes the definition that resulted from that discussion. Longmore, Paul, "The Life of Randolph Bourne and the Need for a History of Disabled People: Review of Bruce Clayton's Forgotten Prophet: The Life of Randolph Bourne," in Reviews in American History, (Dec. 1985), 581-87. Longmore used the opportunity of this review to decry the writing about individuals with disabilities without understanding disability as a social and cultural condition as well as a medical one and advocated for the historical study of disability from a disability perspective. Peters, Anne, "Developing a Language: Naming is Power," Disability Rag, 7, (4), (April 1986), 25. In the midst of the ongoing debate over the words "handicap" and "disabled," Peters wrote this article discussing the importance of the dialogue. See also, "Developing a Language: What about 'gimp'" Disability Rag, 7, (5), (May/June 1986), 20. Peters, D.J., "Human experience in disablement: the imperative of the ICIDH," Disability and Rehabilitation, 17 (3/4), (1995), 135-44. An admirable attempt to integrate a medical, academic, and disability perspective into new paradigms. Pfeiffer, David "Is There a Culture of Disability?" 1984 and Beyond, Proceedings of 1984 AHSSPPE Conference, 1984. An argument that there is a learned culture of disability. See also, "Hip Crip 101," Mainstream: Magazine of the Able-Disabled, 19, (4), (Dec-Jan 1994-95), 32-37, a discussion of books about disability, including several top ten reading lists. Piastro, Dianne B., "Telethons...Where do we go from here?" Disability Rag & ReSource, 16, (4), (July-Aug. 1995), 24-26. A columnist who has railed against telethons argues it may be time for a different approach. Schein, Andrea, "Is There A Culture of Disability?" 1984 and Beyond, Proceedings of 1984 AHSSPPE Conference, 1984. Schein describes an evolution from medical failures to civil rights advocacy in concluding there are disability sub-cultures. Smith, Michael and Beth Haller, "Media and Disability Policy: An Annotated Bibliography," Disability Studies Quarterly, 15, (2), (Spring 1995), 22-26. Stothers, William G., "It's Time to Wake Up to Our History and Power," Mainstream: Magazine of the Able-Disabled, 17, (3), (Nov. 1992), 50. Many people find Stothers' editorials one of the highlights of each issue. This one reminds us that disabled people have a history and that we need to recognize and promote it. Wade, Cheryl Marie, "Crazy, etc." Disability Rag & ReSource, 16, (2), (March/April 1995), 33-36. Performance artist Wade now writes an ongoing column for the Rag depicting various aspects of the culture of disability. This one is about artists with mental health disabilities. See also, "Creating a Disability Aesthetic in the Arts," Disability Rag & ReSource, 15, (6), (Nov-Dec 1994), 29-31, "Documentaries, Crip Style," Disability Rag & ReSource, 16 (1), (Jan-Feb 1995), 30-33, "Identity," Disability Rag & ReSource, 16, (5), (Sept/Oct 1994), 32-36, "Look, Ma, It's a Poem," Disability Rag & ReSource, 16, (3), (May/June 1995), 33-36, and, "Other Voices: Creating Crip Text," Disability Rag & ReSource, 16, (4), (July-Aug. 1995), 34-37. Waxman, Barbara Faye, "Hate," Disability Rag, 13, (3), (May/June 1992), 1, 4-7. A look at hate crimes against people because they have disabilities. See also, "It's Time to Politicize Our Sexual Oppression," Disability Rag, 12, (2), (March/April 1991), 23-26, and, "The Year of the Disabled Woman, or Girls, It's Time to Flaunt Your Sexuality," Disability Rag, 14, (3), (May/June 1993), 28-29. Wolfe, Kathi, "Backlash!" Mainstream: Magazine of the Able-Disabled, 19, (8), (May 1995), 31-34, 35-36. A discussion of current anger expressed verbally and physically against individuals with disabilities and in the context of the development of a culture of disability. See also, "I do want to talk about it, Disability Rag & ReSource, 16, (1), (Jan-Feb 1995), 34-35, "Springtime for Hitler: A Journal," Disability Rag, 14, (6), (Nov/Dec 1993), 11-13, and "Stonewalled? A Journal," Disability Rag & ReSource, 15, (6), (Sept/Oct 1994), 21-22, 27-28. Zola, Irving Kenneth, "In the Active Voice: A Reflective Essay on Three Books," Policy Studies Journal, 21, (4), Winter 1993, 802-805. When Zola passed away in December 1994, we lost one of our most prolific, creative, and enthusiastic explorers about disability and its role. This essay clearly identifies dichotomies between being perceived with and without a disability from within and without. See also, "Shaping an Interdisciplinary Field of Disability Studies: The Perspective of Sociology," in Brown, ed., An Independent Living Approach, 5-9, describing, among other things, the development of the Disability Studies Quarterly,"Whose voice is this anyway? A Commentary on recent collections about the experience of disability," Medical Humanities Review, Jan. 1988, 6-15, and "Disability Statistics, What We Count and What It Tells Us: A Personal and Political Analysis," Journal of Disability Policy Studies, 4, (2), 1993, 9-39. NEWSPAPERS, NEWSLETTERS Ann-Lewis, Victoria "The Secret Community: Disability and the American Theater," Impact, II, (1), (Fall/Winter 1994-1995), 2-3. In the World Institute on Disability newsletter, Ann-Lewis describes disability in the world of theater, particularly at her own Mark Taper Forum in Los Angeles. Auberger, Mike, "Address by Mike Auberger, D.C.--May 9, 1993," Incitement, 9, (4), (June/July 1993), 6, 12. Contains the powerful statement, "Martin Luther King had a dream. We have a destiny, not a dream, a destiny, to realize. We shall have the right to choose how we live, and where we live." Bechdol, Barb, "Welcome Mercedes," Dykes, Disability & Stuff, 5 (1), 6-7. Mercedes is a newly-acquired wheelchair. Brown, Steven E., "American Apartheid," Advocate (Progressive Independence, Norman, OK), (January 1988), 1. An early discussion of the treatment of people with disabilities paralleling the South African oppression of blacks. See also, "Declaration of Principles," Cleveland County Independent Living Advocate (August 1983), 1, an endeavor to describe what we will and will not accept from society, "The Disability Identity," OCCD (Oklahoma Coalition of Citizens with Disabilities) Newsletter, VII, (Winter 1986) 9-10, a positive glimpse of living with a disability, and, "The Truth About Telethons," OCCD Newsletter, VII, (Summer/Fall 1985) 4-5, a discussion of why separate is still never equal, including when disabilities are singled out at specific times of the year. Marcus, Neil, ed., "A Limited Edition Collection of Special Effects Newsletter," (Santa Barbara, CA: Access Theatre, 1988). Neil, actor-author-playwright, has been putting many of his thoughts into this newsletter for years and distributing it randomly. This is a collection of what he considers his best efforts. Piastro, Dianne B., "Creating a group identity, culture," in "Living with a Disability" column distributed by Newspaper Enterprises Association, May 4, 1992. Discussion of the development of the University of Minnesota's Disabled Student Cultural Center. See also, "Disability Culture," in "Living with a Disability" column distributed by Newspaper Enterprises Association, July 18, 1993, discussed in narrative. Zinman, Sally, "The legacy of Howie the Harp lives on," National Empowerment Center Newsletter, (Spring/Summer 1995), 1, 9. One of the leaders of the mental health disability rights movement is remembered in this touching and evocative article. MONOGRAPHS Leon, Joan, ed., Just Like Everyone Else (Oakland: World Institute on Disability, 510 16th St., Suite 100, Oakland, CA 94612, 1992). Culture, political advances, and independent living are interspersed with photographs, directories, and quotations. Lenihan, John, Performance: Disabled Americans: A History (Washington, D.C.: President's Committee on Employment of the Handicapped, 1976-77). Dated, but still contains information about the history of disability found nowhere else. Levy, Chava Willig, A People's History of the Independent Living Movement (Lawrence, KS: University of Kansas Research and Training Center on Independent Living, 4001 Dole Building, Lawrence, KS, 66045, 1988). A brief look at the development of the independent living movement though the lives of some of its key players. Kailes, June Isaacson, "Language is More Than a Trivial Concern," (Available from author, 6201 Ocean Front Walk, Playa del Rey, CA 90293, 1992, revised from original 1984 version.) The best analysis of why language is so important, what to use, what not to, and why. VIDEOS (Most recent prices included, where known) Able to Laugh (1993) [Video--27 minutes] Produced by Michael J. Dougan. (Available from Fanlight Productions, 47 Halifax St., Boston, MA 02130). $195. Six professional comics who have disabilities. Black Diamond [Video--9 1/2 minutes] (Available from Melanie Media, 2951 Derby St. #101, Berkeley, CA 9470) $25.00. Afi-Tiombe Kambon performs story of fate of a child born with a disability to a woman in slavery. Dancing from the Inside Out. (1993) [Approximately 40 minutes] (Available from Axis Dance Company, 962A 54th St., Oakland, CA 94608). The video of this dance troupe, which formed in 1987, combines interviews of three dancers with disabilities with footage from a performance using the group's combined talent of people with and without disabilities. Exploding myths: Exploring the emerging culture of disability. (1993). [Video]. (Available from Corporation on Disability and Telecommunications of Northern California, PO Box 1107, Berkeley, CA 94704) A look at Bay Area artists, including Cheryl Marie Wade, Neil Marcus, and Bruce Curtis. Fairy tales can come true. (1981). [Video--35 minutes]. (Available inter-relations, PO Box 11445, Berkeley, CA 94712) $30.00. Explores fantasies about a young man with a disability becoming sexual and having a relationship. Includes nudity. Gospel according to Berkeley. (1992). [Video]. A look, via the British Broadcasting Company, at the development of the independent living movement, focusing primarily on Berkeley. Here--A poetry performance. (1992). [Video and cassette--13 1/2 minutes]. (Available from CM Wade, 1613 5th St., Berkeley, CA 94710-1714). Video: Institutions: $35.00; Individuals: $25.00; Low-income individual: $15.00. Cassette: $5.00-10.00 Sliding Scale. Cheryl Marie Wade performs her poetry. Max and the Magic Pill. (1995). [60 minutes] (Available from Paraquad, 311 N. Lindbergh Blvd., St. Louis, MO 63141). A disability rights pioneer explores his life and work, focusing on the theme that his fondest desire is to be a regular guy. No Apologies. (1995). [Video--28 minutes]. (Available from the Next Renaissance: a catalog of disability art, culture & collectibles, 2260 Sunrise Point Rd., Las Cruces, NM 88011). Moving, humorous performances from a 1990 show, interspersed with interviews with group members. Open captioned. Out of isolation. (1989). [Video--105 minutes]. Produced by Frank Moore. (Available from the Next Renaissance: a catalog of disability art, culture & collectibles, 2260 Sunrise Point Rd., Las Cruces, NM 88011). Surreal, look at life in an institution. Includes nudity. Mr. Roberts. (circa 1988). Sixty Minutes. [Video--approximately 15 minutes]. (Available from World Institute on Disability, 510 16th St., Oakland, CA 94612). $20.00. Harry Reasoner interviewing Ed Roberts and his mother, Zona, discussing Ed's early years, his experience with polio and his decision to live, and the founding of the Physically Disabled Student Program, Center for Independent Living, and the World Institute on Disability. "Redefining Ourselves." [Video package--83 minutes]. (Available from Corporation on Disabilities and Telecommunications/Northern California, PO Box 1107, Berkeley, CA 94704). Two week rental prices: Non-profit organizations and schools: $90.00; Governmental agencies and businesses: $100.00. Includes Here; The Moving Body, featuring Bruce Curtis in experimental movement and dance; The Commercial, a comical look at how to avoid someone with a disability performed by Wry Crips Disabled Women's Theater; Black Diamond, Afi-Tiombe Kambon performs story of fate of a child born with a disability to a woman in slavery; Migraine 2000, featuring art work of Peni Hall; Melvin's Brat, a satirical look at TV tele-a-thons for kids with disabilities featuring Pamela Walker; and Into the Echo Chamber/DreamWeave, featuring six disabled artists collaborating on exploring the creative process and combining their music, dance, and poetry. Tell them I'm a mermaid. (1982) [Video-23 minutes] (Available from Films Incorporated Video, 5547 N. Ravenswood Ave., Chicago, IL 60640-1199) $99.00. Victoria Ann-Lewis and six other women describe life as women with disabilities. We won't go away... (1981). [Video]. (Available from World Institute on Disability, 510 16th St., Oakland, CA 94612). $20.00. A look at the 504 demonstrations in San Francisco and the early independent living movement. When Billy Broke his Head...and Other Tales of Wonder (1995) Produced by Billy Golfus and David E. Simpson. [Video-Open captioning available-57 minutes] (Available from Fanlight Productions, 47 Halifax St., Boston, MA 02130). $245.00. WOW!!! Dare I say it? This is inspirational: includes activism, art, bureaucracy, family, friends, and a look at everyday life--all in a very funny hour. FILMS: "Above Suspicion" (1995) Once again recent movies are providing many of the most outrageous clich‚s about disability and using a wheelchair. This one includes lines like "he's just not a wheelchair kind of guy," and "I don't want to live as half-a-man." There are twists with this one though, both in the movie and real life: first, in the movie, Christopher Reeve, best known for roles as Superman, becomes injured while on the job as an extremely efficient policeman, partly through the incompetence of his brother. Reeve discovers his brother and his wife have been having an affair, but rather than confronting them, asks that they kill him. It's a set-up; Reeve arranges everything, including unloaded guns. He then kills them, and it turns out he has recovered, at least partially from paralysis, and can walk with a cane. He has used the wheelchair as a mask to convince everyone that he is now helpless. The real-life irony is that not long after the release of this movie, Reeve was thrown from a horse, and has apparently become a high-level quad. Stay tuned. "Benny and Joon" (1993) Poignant film about a brother and sister, who is mentally ill, and unusual man who comes into their life. Not quite retarded, not quite typical, a Buster Keaton clone with sweet personality who is misunderstood by most. He and the sister fall in love. Mental illness is dealt with realistically and empathetically, as are family relationships. "Best Years of Our Lives," (1946) The story of three veterans returning from World War II and their chaotic attempts to fit into the world they left. Harold Russell, who lost both hands in the war, plays someone who is trying to fit in despite his disability. He is finally redeemed by his pre-War girlfriend who still loves him. A classic because of the perception of the many varieties of difficulties of post-war life and the realistic treatment of disability. "Bob Roberts" (1992) Political satire that finds the protagonist, Bob Roberts, faking an assassination attempt and paralysis in his successful quest for a Pennsylvania Senate seat. "Born on the Fourth of July," (1989) Ron Kovic, Vietnam Vet who's paralyzed, and becomes an anti-war protester is portrayed. There is little about what it's like to have a disability, beyond its hopelessness and permanency. "Butterflies are Free" (1972) Story of a blind man and a flighty woman, both trying to make it on their own, who move in next door to one another in a San Francisco apartment. "Children of a Lesser God," (1986) Based on Mark Medoff's play, which is reputed to deal with issues of deafness in a more sophisticated way, this becomes a love story between a nondisabled teacher of the deaf and a beautiful, but isolated, deaf woman. The woman is played by Marlee Matlin, a deaf actress who won an Oscar for her role in the film. "Coming Home" (1978) Emotionally wrenching story of the Vietnam War's effect on people in the U.S.--both those who stayed and those who return. Jane Fonda falls in love with paraplegic Jon Voight, while husband Bruce Dern is at the front. Some of the best scenes occur in the VA Hospital, with soldiers angry and wondering what this war is about. "Forrest Gump," (1994) Tom Hanks is Forrest Gump, who's 75 IQ does not stop him from becoming a star athlete, military hero, successful businessman, and husband and father. Most of his worldly success comes from accidents of fate, which is appropriate since he is also constantly intersecting with history, eg Elvis, Bear Bryant, Kennedy, Vietnam, slogans, etc., but his personal interactions and successes come because he respects people for who they are unless they are hurting someone else. As interesting as is the film is the reaction to it, which has ranged from an allegory for our times to an insipid tale. "Freaks" (1932) About circus freaks, using the real thing for many of the characters, presented as a horror story full of grotesque anomalies of nature, it is early independent living with a community/culture, love, hate, jealousy, and families, shown in the backdrop of one of the freaks--"a dwarf" who falls for a "big woman" who's only toying with him. The freaks band together. "Homer and Eddie" (1989) James Belushi stars as a man who's "slow" from being hit by a baseball as a kid and Whoopi Goldberg as an escaped mental patient with controllable fears and violent streaks. They are on a picaresque journey to see Homer's parents, who had no time or need for him. When they get there the father has died. The two have become friends but Goldberg is shot--ironically, in one of her few non-robbery attempts. Lots of other people with disabilities show up along the way-- stutterer, man who thinks he's Jesus, and others. "I Don't Want to Talk About It" (1994) Spanish Story of a mother who refuses to let her daughter be different or to recognize her short stature and of an older man who falls in love with the adolescent dwarf, woos her, and then loses her when a circus of dwarves comes to town. "Johnny Belinda" (1948) Classic, sensitive, story of "deaf-mute" young girl who is befriended by doctor who knows some sign language and is only person who really communicates with her. Of course, they fall in love. "Lorenzo's Oil" (1992) Based on a true story of two parents who would not accept doctors' diagnoses that son with ALD, a rare, terminal disease, would die within a short time. Fighting doctors, the ALD Foundation, and pharmacies, the pair discover an oil that neutralizes ALD and is now being used all over the world. Excellent acting and portrayal of parents. "Lunatics: A Love Story" (1992) Sweet love story about delusional paranoid man and woman who believes she kills by her presence. "Mac and Me' (1988) Notable only for featuring a wheelchair using kid as a wheelchair user. "Magnificent Obsession" (1935 and 1954) Story of selfish playboy whose carelessness causes woman to lose vision and his dedication to going to medical school and healing her. Of course, they fall in love. "Man of a Thousand Faces" (1957) Stars James Cagney as Lon Chaney, growing up bitter with deaf parents, marrying a disturbed woman and playing series of characters who are crippled physically, most notably in "Phantom of the Opera." "Man Without a Face" (1993) Mel Gibson stars as 60s teacher who's been disfigured in car accident which also killed student. He has been convicted of child molestation and secluded himself since. A troubled boy comes to him for tutoring and film follows their friendship, but Gibson is again accused of molestation, primarily because people cannot see beyond his face. Moving drama, realistic reactions to disfigurement. "Mask" (1985) Based on the true story of Rocky Dennis, whose face is disfigured by a rare disease and the consequences it brings. "Monkey Shines" (1988) Based on a book about a monkey who assists a quadriplegic, it becomes a horror story as the monkey begins to read the mind of the quad, who's bitter and brilliant, and begins acting out the quad's homicidal fantasies. "Now, Voyager" (1942) Bette Davis excels as woman with a psychiatric disability who finally adapts with the help of compassionate doctor, but is ever aware of her fragile mental health. "Nuts" (1987) Good portrayal of someone who is labeled "mentally ill" and may or may not be. "Philadelphia" (1994) A lawyer with AIDS who sues his firm for firing him--suit is based on 504, odd given the late date of the film that ADA is unmentioned--Tom Hanks won Best Actor Oscar in 1994 for his portrayal of the lawyer. "The Piano" (1993) Story of a woman, who chose to be mute at the age of 6, abuses she faces and how she speaks and falls in love by playing the piano--critics call it "lyrical," I thought it slow, more focused on abuse than muteness and equating silence with death. Holly Hunter won 1994 Best Actress for her portrayal of woman, Anna Paquin Best Supporting Actress for playing pre-teen daughter and Jane Campion for script writing. "The Point" (1971) Singer-songwriter Harry Nillson's classic animated tale about a boy born with a rounded head in a land where everyone and everything has a point. The boy is outcast, but learns that it is what's inside that counts, not what's on the outside. A classic parable for disability. "Regarding Henry" (1991) Story of lawyer who has brain injury from bullet wound. Provokes diverse reactions from sappy to nice story of man adapting to a disability. Injury serves to redeem Henry from former savage lifestyle to becoming a nice man. "Tim" (1979) Sweet story of young mildly retarded man, his family, and older non-disabled woman who falls in love with him. Tim is integrated in most ways, with exception of schooling, since he couldn't learn, he was withdrawn at 15--but in movie he begins to learn to read. "The Waterdance" (1992) Fact-based story of scriptwriter who becomes a paraplegic, and his life in a rehabilitation center. "What's Eating Gilbert Grape?" (1994) A slice-of-life family tale, whose family includes an eighteen year old with mental retardation and an obese mother. The juxtaposition of child and mother is interesting; mother is far more handicapped, almost never leaving her house and ashamed of her appearance; son is outgoing and mostly happy. RADIO "On a Roll!" America's only live weekly radio talk show on disability. Gregory A. Smith, Sr., Host/Producer, KFNN Radio 4800 N. Central, Phoenix, AZ 85012 (602) 759-8916, (602) 241- 1540 (FAX). MUSIC--Tapes/Compact Discs Coleman, Diane, "Free Our People," (Available from the Next Renaissance: a catalog of disability art, culture & collectibles, 2260 Sunrise Point Rd., Las Cruces, NM 88011). An ADAPT activist sings both the current and past ADAPT theme songs and other songs of disability pride and protest. Creschendo, Johnny, "Easy Money," (Available from Mouth, 61 Brighton St., Rochester, NY 14607, 1990) Johnny's first tape of rock'n'roll disability pride songs from England. See also, Crescendo, Johnny and the P.O.P. (Piss on Pity) Squad, "Pride," (Available from Mouth, 61 Brighton St., Rochester, NY 14607, 1993). Field, Jane, "The Fishing is Free," (Available from the Next Renaissance: a catalog of disability art, culture & collectibles, 2260 Sunrise Point Rd., Las Cruces, NM 88011). Higgins, Mike, "Thank You for Your Application." (Available from Mouth, 61 Brighton St., Rochester, NY 14607, no date). An English activist in the folkwriter-singer tradition. Kolb, Elaine, "We Are Everyone," (Available from the Next Renaissance: a catalog of disability art, culture & collectibles, 2260 Sunrise Point Rd., Las Cruces, NM 88011). A compact disc (or tape) compilation of the singer-songwriter, including the 1980s ADAPT theme song, "We Will Ride." Moyer, Jeff, , "Good Medicine!" (Available from the Next Renaissance: a catalog of disability art, culture & collectibles, 2260 Sunrise Point Rd., Las Cruces, NM 88011). Described as the resident musician of the 504 sit-in at the Federal Building in San Francisco, Moyer's folk songs are filled with disability lore, except this compilation which are old time folk songs. , "Special Ed Ranger: Jeff Moyer in Concert," (Available from the Next Renaissance: a catalog of disability art, culture & collectibles, 2260 Sunrise Point Rd., Las Cruces, NM 88011). , "We're People First: A Celebration of Diversity," (Available from the Next Renaissance: a catalog of disability art, culture & collectibles, 2260 Sunrise Point Rd., Las Cruces, NM 88011). Stanton, Ian, "Freewheelin'." (Available from Mouth, 61 Brighton St., Rochester, NY 14607, 1992). Another English activist in the folkwriter-singer tradition. See also, "The Incredible Shrinking Man." (Available from Mouth, 61 Brighton St., Rochester, NY 14607, 1989). COMICS: Griffith, Bill, Zippy Stories (San Francisco: Last Gasp, 1986). A compilation of pinhead comics with an introduction explaining how Zippy's creator came up with the idea and a look at the model for the cartoon character. "Superman: Lost Love," D.C. Comics, New York, NY: Dec. 1987. The superhero falls in love with a woman who uses a wheelchair. Tales from the Cripped, Volume One...Wheelchair-Bound to Boil You Alive (Rochester, NY: Free Hand Press, Available from Mouth, 61 Brighton St., Rochester, NY 14607) 1994). Some of the best comics from the Mouth. CULTURAL ARTIFACTS: Calendars: Dunning, Tajuana, Kym King, and Laura Smith, "1995 Disability Media Calendar," (Houston: Independent Living Research Utilization, 2323 S. Shepherd, Suite 1000, Houston, TX 70719). One of a series of ILRU calendars, including photos and a wealth of information about disability events and activities. "Entering the 1990's...A New Generation," (Berkeley: Center for Independent Living, 1991). A look at young leaders in the Berkeley area. "Who says we don't have leaders? People with disabilities moving ahead in 1994," (Louisville: Advocado Press, 1993). A look at national leaders. Women's Press, Everywoman's Almanac, 1995. (517 College St., Suite 233, Toronto, Ontario, Canada, M6G 4A2, 1995). Women with disabilities fill every month with twelve fascinating personal stories. Catalog: "The big Mouth Catalog of Publications." (Available from Mouth, 61 Brighton St., Rochester, NY 14607) Each issue Mouth sells T-shirts, music, books, posters, pendants, and other cultural artifacts. Posters: "Disabled Women: Hidden from History," developed by Anne Finger. Limited edition portraits and biographies of Helen Keller, Frida Kahlo, Harriett Tubman, Carrie Buck, and Dorothea Lange. "Paths to Equality," West Virginia Developmental Disabilities Planning Council, with poem by Shirley Klein, "To Reverend Martin Luther King." Poster includes both art and the above poem, which discusses disability in the context of civil rights and Martin Luther King, Jr. SELECTED WEB SITES NOTE #1: Web Sites have a propensity to change addresses. A search engine (a way to find different sites and subjects) specifically geared to disabilities is: Yahoo! disabilities at: http://www.yahoo.com/Society_and_Culture/Disabilities/ NOTE #2: All sites listed have links to many other sites. DPI: http://www.escape.ca/~dpi Disabled People International provides a good introduction to the international disability movement. Institute on Disability Culture: http://www.goodnet.com/~onaroll/culture.html Includes a description of disability culture, essays (forthcoming), and the Next Renaissance: a catalog of disability art, culture & collectibles. Institute on Independent Living: http://www.independentliving.org A European consortium has assembled a wonderful site about independent living throughout the world. Maintained by Adolf Ratzka, one of the pioneers of independent living in Europe and the world. MAINSTREAM: http://www.mainstream-mag.com The magazine's site includes lots of information related to published articles, including ones about disability culture. New Mobility: http://www.newmobility.com The magazine has developed a most interesting site, with lots of self-promotion and great links. Not Dead Yet: http://www.acils.com/NotDeadYet What do you think about physician-assisted suicide. Here is the site of the most prominent players in opposition to the idea. On a Roll: http://www.onarollradio.com Founder Greg Smith has developed an excellent site, with up-to-date lists of where the syndicated talk show about disability currently airs and many other areas of interest. PKTS: http://theguru.com/pkts/pkts1.htm Consultant Vincent Sadowski's site is exemplary for great links, interesting information and ways that politics can be affected via the World Wide Web. Uppity Disability Resources: http://gandalf.umcs.maine.edu/~asl/upmain.html An iconoclastic site. Take a chance and visit. Very Special Arts: http://www.vsarts.org The name has not changed in years, but the organization has. Focus moves from disability to the arts to education and back again. Check it out and see what you think. Yellow Dream Machine: http://www.realtime.net/~cyanosis/ A Texan's fantasy web site, with lots of reality thrown in. Web of All Possibilities: http://www.eroplay.com Underground artist Frank Moore's web site shares his words, art, and work in typical graphic fashion (that is, nudity is included).