by Bonnie Shoultz

This article discusses individual self-advocacy, group self-advocacy, and the the self-advocacy movement. While I will speak from my vantage point as an observer and support person who has fairly intimate involvement with all three types of self advocacy, I want to make clear that these are my own opinions rather than ideas that have been sanctioned or adopted by members of the self-advocacy movement.

The self-advocacy movement is an international civil rights movement led by and for people with developmental disabilities and is one part of the broader disability rights/independent living movement. It is international in many ways. It originated in Sweden in the 1960s, when a group of people with mental retardation labels developed a list of requests about how their services should be provided, and gave the list to the parent organization that supported them. This new idea, that people with these labels could speak for themselves and had something meaningful to say, spread to England and from there to Canada and the United States. Now the movement is alive and growing in many countries--at the last international self-advocacy conference in 1993 in Toronto, attended by nearly 2000 people between 20 and 30 countries were represented.

The self-advocacy movement is a civil rights movement in many ways, as well. It is essentially about improving the civil rights of people who have been and still are oppressed, ignored, devalued, and segregated because of how they are viewed as people who have or are labelled as having developmental disabilities. Much has already been written about this movement: its members and helpers have produced many manifestos, videos, books, manuals, papers, films, and articles. Dissertations and studies have also examined aspects of the movement. Instead of rehashing what is available elsewhere (see the end of this article), I will describe a recent national conference put on by People First of Oklahoma. This conference--its content and the way it was organized and run--illustrates some of the critical civil rights elements of the self-advocacy movement in general.

Self-advocates and supporters from all over the country were in Tulsa, Oklahoma from August 29-September 1, 1996 to celebrate their movement, to learn from and share with each other and with nationally known speakers such as Justin Dart, Robert Williams, Tia Nelis, and Gunnar Dybwad, and to elect new members and officers for the Board of Directors of the national organization formed in 1991, Self Advocates Becoming Empowered (SABE). Because there was no more room, registration was closed at 850 participants from almost every state, though more people wanted to attend. The conference included business, politics (national and organizational), music, fun, networking, exhibits, workshops and plenary sessions--all the ingredients that go into any conference. What was unique to this meeting, however, was the transformative energy and power that could be felt in every plenary session. This energy and power had to do with pride, hope, resolve, and an absolute belief that those present were involved in a cause larger than themselves and could make a difference in the lives of people with disabilities. People who had never before attended a national self-advocacy conference, whether or not they had disabilities, described the experience as "awesome," "eye-opening," "being blown away," and "incredible." It was bigger than any one entity or organization present, but I would like to describe some of the ways People First of Oklahoma and Self Advocates Becoming Empowered contributed to that energy and built it into a palpable force.

People First of Oklahoma worked for the last three years to plan and organize the conference. In the spring of 1993, they presented their bid to SABE to have Tulsa as the site of the 1996 event, and were chosen over two other states. People First of Oklahoma has a strong organizational structure and is housed by the ARC-Tulsa, which provides an enormous amount of logistical and other support to the organization. It had already proved its commitment to the national movement in many ways, and showed the organization that it could host such a conference. Many of the members and helpers in Oklahoma have been involved since the late 1980s, and they have held six state conferences, two of which I had attended. Their state conferences were characterized by many of the qualities that were evident in the national conference -- energy, pride, leadership, love and caring, among others.

Doing it themselves is an act of resistance for people with mental retardation and other developmental disability labels, a demonstration that they have and can exercise rights (and capabilities) as citizens. For this conference, People First of Oklahoma members and advisors/support people worked together to ensure that it would be led by and for self-advocates. Every facilitator or moderator on the main stage, and almost every presenter, was a person with a disability (the exceptions were a representative of Tulsa's mayor and a state legislator who has a long positive relationship with the movement). The planning committee had developed a detailed agenda that listed every detail and named the person who would be responsible for it. Thus, when announcements had to be made, the self-advocates responsible had a written account of what they needed to say. When a speaker was to be introduced, a People First of Oklahoma member had worked alone or with a helper to prepare that introduction, and gave it in a polished manner. Moderators or speakers who could not read well were assisted by another self-advocate who could read (typically, People First of Oklahoma President Joseph Meadours, who would whisper the words to the moderator when he or she did not know them). Thus, the self-advocates were truly in charge of their conference. The content of the conference--the plenary speeches and the workshops--had to do with the current political scene, with issues facing people with disabilities, and with SABE's new campaign for institutional closure. Justin Dart and Bob Williams gave rousing speeches that addressed current issues and encouraged people to vote in the coming election. Gunnar Dybwad recalled the history and growth of the self-advocacy movement. Nancy Ward, outgoing Chairperson of SABE, gave an update on the activities of SABE and announced its new membership drive. Tia Nelis, new Chairperson of SABE, invited all present to join the "Close the Doors Campaign for Freedom" initiated by SABE, and she and singer Karl Williams led the group in songs and chants about institutional closure. Close the Doors t-shirts, buttons, and notecards were sold, and each attendee received a Close the Doors Campaign packet of tools self-advocates can use to promote institution closure in their own states and localities.

Self Advocates Becoming Empowered had just received 501(c)3 nonprofit status, and had just begun to separate its financial operations from those of People First of Tennessee, which had provided a home for its monies since 1992. SABE's Steering Committee had just become a Board of Directors, and Tulsa was the occasion for replenishing that Board with new members. SABE divides the country into 9 regions, each of which is represented by two people who serve 4 year staggered terms. Thus, every four years regional meetings are held at a national conference to elect one representative to the Board from each region. Elections for the other representative's position are held at the next conference. Representatives may serve for no more than two 4 year terms. Once it is known who will be on the new Board, campaigning begins for officer candidates, who must be elected Board members.

Election day was a day of high emotions and anxiety. The elections were taken very seriously by a majority of those present, who showed their understanding that they were electing people to represent them at the national level, and that their representatives would be working on serious issues that would affect their lives. The development of this understanding has grown since 1991 when the first elections were held after those present at a national conference in Tennessee voted to form a new national organization. At the 1991 elections, most had little idea of how much work was involved or of how difficult it can be to travel to quarterly meetings where they work steadily for three days and nights, and look for funding to support the commitment one has made in running for representative or officer. In Tulsa, everyone was aware that these elections were significant.

One of the values of the self-advocacy movement has had to do with the necessity to share leadership opportunities with other self-advocates. It can be difficult to do so, because the recognition and opportunity that goes with leadership can be enticing, especially when one knows one has done a good job. At this conference, though, former SABE Chairperson Nancy Ward chose not to run for re-election as Chairperson, reasoning that it was important to adhere to what she believes (she did run for, and was elected as, SABE Secretary). Therefore, the Chairperson position was open; Tia Nelis, who was elected, ran against Cherie Tessier. Other officers are James Meadours, Co-Chairperson, Theresa Moore, Vice-President, and Debbie Robinson, Treasurer.

Group self-advocacy is another, perhaps the most critical, form of self-advocacy. There could be no national or state self-advocacy organizations without local groups. Self-Advocates Becoming Empowered defines self-advocacy as a group activity:

Self advocacy is about independent groups of people with disabilities working together for justice by helping each other take charge of our lives and fight discrimination. It teaches us how to make decisions and choices that affect our lives so we can be more independent. It teaches us about our rights, but along with learning about our rights, we learn about our responsiblities. The way we learn about advocating for ourselves is by supporting each other and helping each other to gain confidence to speak out for what we believe in.

Because many of the available materials are about self-advocacy groups and their activities, I will do no more here than mention that it is necessary to be clear, when discussing self-advocacy, to distinguish between the movement, group self-advocacy, and individual self-advocacy. Too often, these are confused in the minds of people who are outside of the movement. The confusion is revealed when people with disabilities are uniformly referred to as "self-advocates," and when it is assumed that "self-advocates should ..." get involved in or testify about one or another thing that seems important to people without disabilities.

Individual self-advocacy can be defined in many ways, and one need not be a member of the self-advocacy movement to engage in individual self-advocacy. One way to think of it is as a lifelong personal pursuit of control over one's own circumstances. It is the act of advocating for what one wants, for how one desires to live, for how one wants to be treated, within one's family, community and services, and it does not end with one concession or one victory. It continues, because each triumph creates a new set of issues to be faced. Everyone, whether or not one has a disability, is male or female--whatever one's racial or ethnic identity, whatever other identities one holds--can practice individual self-advocacy. For many people, this practice is almost invisible because it is so taken for granted. For many people with developmental disabilities, however, individual self-advocacy is visible and has a heightened meaning. It, or its absence or aberrations, is in the foreground of the person's experience on a daily basis, from moment to moment. Families are learning to promote it by encouraging their family members with disabilities to speak up, to make choices and understand themselves and the world around them.

Service agencies have policies promoting choice and a self-expression. Why? Because until recently, everyone else but the person involved made the decisions, the rules for living, the socio-political culture that encompassed the person's life. The person was taught from birth to comply and thought of as having no voice, no ability to think for himself or to understand the reasons for things. The current emphasis on individual self-advocacy, meager as it is in many places, is meant to correct a grave wrong that has been done to people with developmental disabilities.

The self-advocacy movement, with its thousands of self-advocacy groups, is an underpinning to individual self-advocacy, whether or not individuals who advocate for themselves are members. As a civil rights movement, it provides a context within which individual self-advocacy can operate and succeed. This context has a complex texture. First, the self-advocacy movement teaches people with developmental disabilities, especially movement members, about their rights and responsibilities as citizens of a society. Members learn ways of understanding and working to correct injustices done them, and they learn positive ways of directing their feelings of anger and fear when they feel oppressed. Second, movement leaders and members exercise their influence in the broader society by meeting with service providers and asking for change, by training employees and family members, by testifying at public hearings and legislative sessions, by writing letters and picketing and attending rallies, by participating on committees, and in myriad other ways. Their actions have changed the service system and families, creating a new awareness on the part of both of the abilities and rights of people with developmental disabilities. Third, they have joined in the struggles of the larger disability rights movement to establish (and to prevent repeal of) laws that protect and support them, such as the Americans with Disabilities Act and the Individuals with Disabilities Education Act, as well as hundreds of laws in individual states.

Self-advocacy, as a movement and as an individual activity, is with us and is making a difference for all of us. It is my dream that some day, the general society will adopt and adhere to some of the values forged by the self-advocates I have known.

Preparation of this article was supported in part by the National Resource Center on Community Integration, Center on Human Policy, Schol of Education, Syracuse University, through the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (NIDRR), through Contract No. H133D50037. No endorsement by the U.S. Department of Education should be inferred.

Other resources: The Arc Self-Advocacy Bibliography available from Arc National Headquarters, P.O. Box 1047, Arlington, TX 76004, (817) 261-6003 and New Voices: Self-Advocacy by People with Disabilities, 1996, edited by Gunnar Dybwad and Hank Bersani, available from Brookline Books, P.O. Box 1047, Cambridge, MA 02238-1047

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