by Bonnie Shoultz
More is occurring in the self-advocacy movement today than is possible to describe in a short article. Longhurst (1994), in a recent study of the movement, details many of the areas of growth and development of self-advocacy organizations, and provides a directory of organizations as of 1991. The University of Minnesota (Hayden, 1994) has just prepared a new directory of organizations because of the rapid growth in numbers of groups. With all of this activity, opportunities for people with disabilities (especially developmental disabilities) and for allies without disabilities are proliferating. This article will elaborate on these opportunities, as is based on my personal experience. Accordingly, it represents just one perspective on the self-advocacy movement's achievements and future.
Opportunities for People with Disabilities
People with disabilities can take pride in the knowledge that this movement, which began with small, grassroots groups in many different part of the country, has produced a national organization, Self-Advocates Becoming Empowered, made of 16 elected representatives from each region of the country. The national organization has already been awarded two grants by the Joseph P. Kennedy, Jr. Foundation, and has developed a booklet, Taking Place: Standing Up and Speaking Out About Living in Our Communities, for distribution to self-advocates, service providers, policy makers, parents, and anyone else who has an interest.
The national organization has many other accomplishments and has gained recognition within the national disability community. Its chairperson, Nancy Ward, has met with national disability leaders and with President Clinton, and current and former members of the organization's Steering Committee are regularly invited to nationally significant events such as the July, 1994 White House Celebration of the Americans with Disabilities Act. They have also been appointed to serve with national organizations such as the President's Committee on Employment of People with Disabilities and the President's Committee on Mental Retardation.
In July, 1994, a national conference on self-advocacy was held in Alexandria, Virginia. This conference, organized by People First of Northern Virginia and co-sponsored by Self- Advocates Becoming Empowered, was attended by over 800 people and included presentations by major national policy makers and advocates such as Judy Heumann, Robert Williams, Tony Coelho, Justin Dart, all of whom affirmed the power of people with disabilities speaking for themselves.
New members and officers of the Steering Committee of Self- Advocates Becoming Empowered were elected at this conference, as well, in accordance with the new bylaws of the national organization. This was the first time national officers had been elected at a national self-advocacy conference. Additionally, around 150 participants organized a demonstration in favor of health care reform, and smaller groups engaged in other political activities in Washington, D.C. The conference was a huge success and energized participants to keep on organizing and fighting alongside other disability action organizations.
Locally, and at a state level, the self-advocacy movement is providing numerous opportunities for people with disabilities to learn about and practice self-advocacy skills, including how to be assertive, how to run or participate in meetings, how to give public presentations, and how to help each other with the important issues in their lives. The movement provides people with developmental disabilities a chance to think about and get involved in political action, in major rights issues, in institutional closure, and in the many other issues that are current within the disability field. As the people who are most affected by the decisions that are made in regard to how services are structured and what legislation is passed, they consider themselves the best experts and are demanding the opportunity to be heard and to be involved in planning and policy-making.
Many states have well-run state organizations with many local chapters. The grassroots base of the movement is well established with many participants who have long histories with the movement and others who are just becoming involved. Especially in these states, people with disabilities have opportunities to learn and practice leadership skills, give testimony during local and state hearings and other meetings on issues affecting them, and work on boards and committees of other community organizations that influence their lives.
Opportunities for People Without Disabilities
The self-advocacy movement offers many opportunities unavailable elsewhere to people without disabilities, as well. People without disabilities can offer direct support to groups or can engage in a variety of ways with self-advocacy groups, retaining their own roles as professionals, parent leaders, funders, or service providers but giving and getting support from self-advocacy organizations.
Becoming a group's advisor is perhaps the most challenging and fulfilling opportunity for people without disabilities. Self-advocacy organizations, whether they are just beginning or have been established for years, usually rely on the support of one or more advisors. The advisor is selected by the group's members, is typically but not always an unpaid volunteer, and assumes a support role to the group. The advisor role can be tricky, because its purpose is to help members gain power over their own lives and their own movement. If the advisor does too little, nothing may happen within the group, but if the advisor tries to lead or control what goes on within the group, the members may find it difficult to learn or exercise their capabilities. A good advisor believes fully in the potential of people with developmental disabilities, including those with severe disabilities. Members may experience their advisor as one of the only people in their lives who believes in their ability to grow, make decisions, solve problems, become leaders, and contribute to their communities.
I recently facilitated an advisors' workshop at a People First of Oklahoma conference workshop. I asked those present to discuss ways their involvement in the movement has enriched their lives. Their responses were emotional and direct:
"I can be part of a bringing about justice."
"It gives you a chance to raise hell."
"I get to have deep friendships with people with disabilities."
"It fulfills what I believe about life."
"It gave me a meaning for my life, and self-worth."
"I can be a part of educating the community."
"I get acceptance for who I am from the members."
"I see and am a part of people growing."
"I get the chance to be more politically aware."
"I can be myself, as opposed to acting like a professional."
Opportunities for engagement with the movement also exist for people who do not choose to become advisors. For example, commissioners or directors of state mental retardation and developmental disability offices are learning to consult with self-advocacy organizations and leaders on an ever-widening range of policy issues, and are learning that they may be confronted if they do not do so. People who serve on state or local boards and committees increasingly find that a least one members of their board or committee has disabilities, and can offer to support that person if support is needed. Such support can range from transportation to and from meetings to assistance in understanding and making decisions on the materials used in meetings. Educators -- whether teachers, public presenters or training coordinators -- can involve self-advocacy leaders in their educational efforts as guest speakers or as partners in an endeavor.
As the movement grows, foundations, developmental disability offices and councils, and civic organizations are increasingly being approached for funding.
Funders have often found that their relationship with a self-advocacy organizations is different than that with other types of organizations is different than that with other types of organizations that serve or speak for people with developmental disabilities. Self-advocacy organizations are likely to want to have a relationships with its decision-makers, and to expect that the funding organization's values and objectives fit in with their own. Funding for the movement's organizations is still relatively minimal, and is needed so that growth and development can be reinforced. There are innumerable opportunities for funders.
Parents of children and adults with disabilities can welcome the efforts of their sons and daughters to speak for themselves, and can give support for themselves, and can give support to self-advocacy organizations. Some parents are group advisors, and others direct organizations that give in-kind support to groups, such as meeting space or mailings of meeting notices. The idea of self-advocacy has been difficult for many parents, just as it has been difficult for service providers, but there are also many who are viewing it as an exciting and major development by people with disabilities. Many parents of younger children are supporting their children's eventual self-advocacy by giving choices, teaching responsibility, and helping them meet adults with disabilities who are active in the movement.
People with developmental disabilities don't need us to speak for them or do for them when they can speak for themselves. However, they do appreciate having allies who understand and support their need to have their point of view taken seriously, and to be in charge of their own lives. The self-advocacy movement will continue to grow and reach important new milestones, and will continue to provide opportunities for each of us to enrich our own lives.
Hayden, M. & Senese, R. (1994). Directory of self-advocacy groups in North America>. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration (UAP).
Longhurst, N. A. (1994). The self-advocacy movement by people with developmental disabilities: A demographic study and directory of self-advocacy groups in the United States. Washington, DC: American Association on Mental Retardation.
Self-Advocates Becoming Empowered (1994). Taking place: Standing up and speaking out about living in our communities. Available through ARC Tulsa, 1601 S. Main Street, Suite 300, Tulsa, OK 74119, attn: Michelle Hoffman.
For more information on the self-advocacy movement, you may
contact the author at the Center on Human Policy. She can refer
you to organizations near you.
Preparation of this article was supported by the National Institute on Disability and Rehabilitation Research, U.S. Department of Education for Research and Training Center on Community Integration through Cooperative Agreement #H133B00003- 90 awarded to the Center on Human Policy at Syracuse University. The opinions expressed herein are solely those of the authors and no endorsement by the U.S. Department of Education should be inferred. The Center on Human Policy subcontracts with TASH for space in the Newsletter.
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