READINGS
in Independent Living

ADVOCACY-ORIENTED PEER SUPPORT PART TWO: Moving From Talk to Action

1999
by Steve Brown
How Does Talk Become Action?

This is a key question that center for independent living (CIL) staff, consumers and board members may sit and ponder for years. We all know people who talk a lot about change, share wonderful ideas, and have all kinds of theoretical methods to put their rhetoric into motion, but somehow never manage to translate that passion for words into concrete actions. We also know another set of people who may not have much to say, but always show up when there is a need for someone to participate in a legislative action, or a demonstration, or a conference. Like most spectrums, these two groups compose minorities. The vast majority of us neither verbalize our frustrations nor do we act on them. At different times, any one of us might fit into any or all of the three groups described above. At the best of times, we somehow manage to take our concerns from talk to action. The purpose of this paper is to identify some ways that CIL staff might identity when someone is ripe to move from talk to action.

Anger

Anger is generally the most obvious sign that someone is ready to work for change. Since people with disabilities often encounter discrimination, anger is a frequent response. A person may call or come in to your CIL who is exasperated with a bureaucracy, or who has just encountered a barrier of some kind in your community, or who expresses one of a dozen other reasons to be upset with something that has happened in his or her life. Maybe a person who works with your CIL has been sent to you by Vocational Rehabilitation or another agency to access peer support services.

They join a peer support group and you hope that this will entice them to move from expressing their anger to doing something about it. But instead all they do, and in fact all the group seems to do, is complain. What can you do to advance the process so talk doesn't just continue endlessly and no one does anything?

Acknowledgment

The first, and perhaps most important, reaction you can have is to acknowledge that anger exists. A famous advocate with a disability often tells the story of his younger years when he first began to understand he encountered discrimination and oppression because of his disability. He expressed this belief to some family and friends and they all denied his perception. Years later he decided to see a psychologist who also had a disability. When he proclaimed his frustrations with discrimination and oppression, she did not deny his feelings. In fact, she affirmed them. Yes, she agreed, you do face discrimination and oppression because you have a disability. Now, what are you going to do about it?

Validating someone's feelings of anger is critically important. For a group of people who have been identified for years as in-valid, having emotions of anger denied or minimized is just another slap in the face from an uncaring society. Before someone can act on their anger they must believe it is justifiable. Before CIL staff are likely to be willing to assist someone else in moving their anger from talk to action, they must acknowledge their own feelings of anger as well as those of the person with whom they are working.

Support

Support from CIL personnel many times leads to a way to funnel anger positively. Each CIL possesses knowledge of many situations in your community that need to be changed. CIL staff do not have to be the ones to make all the changes. In fact, if CIL staff are unwilling to share the responsibility of community change with others, then the bulk of the work required is likely to remain undone. There are simply too many items in need of reform.

Once CIL staff recognize and acknowledge the existence of anger they will be challenged to provide support to transform that anger. Individuals coming into CILs often focus solely on what has happened to them. CILs have a responsibility not only to address the individual problem, but to assist people in understanding how their individual problems relate to systemic issues. This may be the most significant role provided by CIL staff because an individual whose attention is turned toward systemic problems is more likely to become engaged in the necessity of a movement, as opposed to resolving only individual concerns. This, in turn, is one way to move someone from talk toward action.

The willingness of CIL staff is a vital component of this transition. But an eager CIL staff does not necessarily translate into one that is skilled at taking an individual or a group from talk to action. Both CIL personnel and those who seek support from the CIL must be attuned to characteristics of leadership.

Leadership

Leaders exist everywhere: schools, workplaces, institutions, families, organizations. Potential leaders include not only those who work at an independent living center, but also those who serve as volunteers or who receive services from a CIL. All leaders have one thing in common: they are able to move people to accomplish change. Sometimes leaders are people who get tired of hearing other people gripe and do nothing. Some people just seem born to lead. Others get angry and tired and decide they cannot sit around and do nothing and just start acting. Some people lead by example and others lead groups of people. All have an ability to persuade other people that their issues are at the very least worth considering.

There is no set formula to become or recognize a leader. Indeed, there are many formulas and lots of books written and seminars conducted about leadership. For the purposes of an independent living center, everyone the CIL comes into contact with can be considered a leader or a potential leader. That way CILs do not make the same mistake other societal organizations do and exclude someone from leadership because they look different, or walk funny, or drool while they talk, or think more slowly than the peer to whom they might be assigned.

There is another advantage to considering everyone a leader. Initially, some people will rise to the occasion. Others will fall back. But even those who retreat will learn something that will be of benefit to them, and one day they may use that knowledge to assume a leadership position with a CIL or elsewhere.

Combining Anger and Leadership

A CIL can be a perfect setting to offer someone a chance to test their leadership skills. It can also be a place to squash leadership development. What's the difference?

Some CILs are criticized for too much delegation and others for too little, but if CIL staff do not share opportunities to create reform then why should others be interested in working with them?

CILs who foment leaders are ones who are willing to let go of some of the responsibility and work toward making change happen. All CILs have many opportunities for people to try out their leadership skills. These include becoming a peer supporter or counselor, facilitating peer support groups, serving on CIL board committees, writing about their experiences and concerns in CIL newsletters, volunteering for other community organizations, communicating with elected officials, attending rallies, writing letters to editors and opinion columns, and volunteering at the CIL.

Not every individual who tries one or more of these or other possibilities will succeed. Neither will all fail. The same is true of every other demographic group. But if people with disabilities are not encouraged to try and fail (or succeed) with the support of a CIL, where will they find the opportunities they need to test their skills? Possibly nowhere. That's why a CIL is a perfect setting to offer someone a chance. It's a good possibility that one or more of the CIL's current staff got such an opportunity in their past.

Over the years since the first CILs began in the early 1970s, many people with disabilities have combined anger and leadership to effect positive change. Examples abound. The Americans with Disabilities Act resulted from people with disabilities being tired of encountering discrimination in a variety of areas of life and writing a law to forbid this discrimination, then fighting to see that the law was passed. As this is being written, many disabled people are readying themselves to advocate with their state governors and with the federal Supreme Court not to weaken the ADA. Rallying cries are occurring at this moment for a variety of causes: stopping the attempts of Jack Kevorkian to promote mercy-killing; increasing Social Security benefits and obtaining work incentives to keep people in the workforce; diverting money from nursing homes into maintaining personal assistance services in the community; increasing transportation options; getting the study of disability into college curricula; promoting disability history through events like Initiative 2000, a celebration of the 10th anniversary of the passage of the ADA; and retaining
independent living centers as advocacy organizations.

What Can Your CIL Do?

Perhaps the most important supervisory task for CIL management is to encourage staff to pay attention. With all the tasks facing CIL staff on a daily basis there may be a tendency to become immersed in what there is to do rather than who there is to do it. In this way we may lose those who come to CILs for help before they are ready to become leaders. For some people, assuming a leadership role will come quickly and naturally. For others, it may take years. CILs, as organizational entities, need to remember that sometimes the world is changed one person at a time and that it is just as vital to interact with one consumer for many hours as it is to talk with a legislator. That consumer may be around for years to come; the legislator may be gone before you know it.

Once a CIL feels that it delivers its services as best it can, do not become discouraged by a seeming lack of response. Even though you may not think you are getting through to someone, you could be wrong. Many times, someone will return to a CIL months or even years after their initial contact. Something said in a first CIL encounter might have changed their life or stimulated their thinking. Those in the CIL may be unaware of these transformations. Just because they are not visible to a CIL does not mean they are not happening.

Finally, just as CIL staff appreciate praise, leadership development includes acknowledgment.

Sometimes the only way leaders know that they are leaders is if people tell them how much they appreciate their efforts and that because of their work change has occurred.

Every CIL has the potential to utilize peer support to move people from talk to action, from anger to leadership. Just like individuals, CILs are not all alike. What works for one may not work for another. But it's more likely that a CIL that has identified some techniques of leadership development will be able to share aspects of their success that do work at other CILs. Contact the ILRU/NCIL National Training & Technical Assistance Project to find out who they are. It may be the most important contact your CIL will ever make.

Steven Brown
Institute on Disability Culture
Center on Disability Studies
University of Hawai'i
1776 University Ave., UA4-6
Honolulu, HI 96822
SBrown8912@aol.com
http://hometown.aol.com/sbrown8912/

About the Author

Steven E. Brown is currently a Resident Scholar at the Center on Disability Studies, University of Hawaii at Manoa. Brown, founder, Institute on Disability Culture (IDC), earned a doctorate in history from the University of Oklahoma. He directed an independent living center in Oklahoma, organized numerous community coalitions, and served as training director at the World Institute on Disability Research and Training Center on Public Policy in Independent Living. He founded the not-for-profit Institute on Disability Culture with his wife, Lillian Gonzales Brown, in 1994. Since then he has become an internationally sought speaker, trainer, and writer.

Brown's publications include dozens of articles and the books Independent Living: Theory and Practice, which has been translated into several languages; Investigating a Culture of Disability: Final Report, the result of a prestigious Switzer Fellowship from the National Institute on Disability Rehabilitation and Research of the Department of Education, the first funding of its type for research into the field of Disability Culture; A Celebration of Diversity: an Annotated Bibliography about Disability Culture, Second Edition; and Celebrating Passion, Relentlessness, and Vision: the Manifesto Editorials. An award-winning poet, Brown has published five books of poetry, Dragonflies in Paradise: An Activist's Partial Poetic Autobiography; The Goddess Approaches Fifty: Poems; Love into Forever: a Tribute to Martyrs, Heroes, Friends, and Colleagues; Pain, Plain--and Fancy Rappings: Poetry from the Disability Culture; and Voyages: Life Journeys.

In recent years, Brown has conducted writing workshops and residencies with groups of all ages, especially with middle and elementary school students. He has written a children's biography about disability rights pioneer Ed Roberts, distributed a monthly online newsletter and continued to publish articles about disability culture and disability rights in a variety of publications. He has conducted trainings throughout the United States and Europe on a variety of disability related subjects.

This document may be reproduced for noncommercial use without prior permission if the author and ILRU are cited.

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, webcasts, 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.

ILRU is a program of The Institute for Rehabilitation and Research (TIRR), a nationally recognized, free-standing medical rehabilitation facility for persons with physical and cognitive disabilities. TIRR is part of TIRR Systems, which is a not-for-profit corporation dedicated to providing a continuum of services to individuals with disabilities.

Substantial support for development of this publication was provided by the Rehabilitation Services Administration, U.S. Department of Education. The content is the responsibility of ILRU and no official endorsement of the Department of Education should be inferred.

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