The Self-Advocacy Movement

"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever does."

-Margaret Mead

Q. What is Self-Advocacy?

A. "Self-advocacy means that individually or in groups (preferably both), people with mental retardation speak or act on behalf of themselves or others on behalf of issues that affect people with disabilities." (Adapted from Williams & Shoultz, 1982). It is frequently referred to as people with disabilities joining together to learn how to speak out for themselves.

Q. In What Ways Is Self-Advocacy A Movement?

A. When we speak of "the civil rights movement", "the parents movement" or the "independent living movement", we are referring to something ike a crusade, powered by people who have been directly affected by unfair attitudes and practices, which has fostered change in our society. Similarly, the self-advocacy movement has redefined the "disability problem" as being less about rehabilitation and more about equality. People involved in the movement are very clear about not wanting to be called retarded, handicapped or disabled or to be treated like children. They are clear that self-advocacy represents "rights" not "dependence" - the right to speak out, the right to be a person with dignity, the right to make decisions for themselves and others.

Q. What Is The History Of The Self-Advocacy Movement?

A. The self-advocacy movement probably began in Sweden during the 1960's. There, people with mental retardation were supported to form and lead their own leisure clubs. National conferences for the members of these clubs were held in 1968 and 1970, and the participants developed statements about how they wanted tobe treated.

In 1972, the idea spread to Great Britain and Canada, and in 1973 a group from Oregon attended a conference in Canada that was intended to be for people with mental retardation. However, this group was unhappy with the Canadian conference, which they felt was dominated by professionals, and went home and formed a self-advocacy group. They called themselves "People First". The name "People First" was chosen to reflect members' dislike of being called "retarded". They felt that their disabilities were secondary to their personhood.

Along the way, they have held international, national and statewide conferences and have formed their own national organization, Self-Advocates Becoming Empowered, which is governed by a Board made up of 18 representatives from across the United States. It was formed in September 1991 at a national conference in Nashville, TN, where participants voted to have a national coalition of state and local organizations. In 1993, there were at least 37 statewide self-advocacy organizations, some having as many as 75 local chapters and some with as few as two or three. Because the movement is growing so rapidly it is difficult to get accurate numbers of groups. Many of these are supported by local or state chapters of The Arc. Many others are independent or are supported by other organizations that provide assistance to the group members.

Q. Why Are Self-Advocacy Groups Important?

A. Self-advocacy has brought out wisdom and qualities of leadership from some unexpected sources. Membership is not contingent upon any skills but simply on the desire and willingness of individuals to speak out with and for oneself and/or others. Within the group, members can learn about their rights and responsibilities, develop confidence about their abilities, practice the skills of speaking in public and studying an issue, learn about voting and group decision-making, exercise problem-solving techniques, and develop assertiveness skills. They can also give and receive personal support from people who have had experiences like their own. Even group members who do not communicate verbally can and do participate in the group and learn ways of advocating for themselves and others.

Just as parents' groups gave parents the opportunities and skills they needed to make effective changes on behalf of their family members with disabilities, so too do self- advocacy groups give people with mental retardation these opportunities. Involvement in a self-advocacy group is, for many people, the best way of participating in the self- advocacy movement.

Q. What Are Some Of The Barriers That Self-Advocates Face?

A. Progress has been made by people with mental retardation in letting others know what they can do and what their vision for the future holds. The challenge that self-advocates struggle with is the low expectations of professionals, parents and the public of their abilities. Mostly, people with mental retardation continue to have limited access to policy makers at local, state, national and international levels and to be excluded from collaborative efforts of disability related organizations that make public policy that directly affects their lives.

Q. What Is AAIDD's Policy On Self-Advocacy?

A. AAIDD joins with people with developmental disabilities in supporting the full expression of citizens with disabilities to speak for themselves in making choices about their lives. This includes decisions about living arrangements, work, personal relationships and the funding of service needs and supports. The Association calls for the international, national, state and local development and support of groups such as People First and Speaking For Ourselves that provide opportunities for individuals with disabilities to advocate for themselves. AAIDD supports increased participation of people with disabilities at conferences and on policy making boards at all levels.

Q. What Are Some Resources To Learn More About Self-Advocacy?

A. A Call To Action: The Roles of People with Mental Retardation in Leadership. (1992). Texas: The Arc, P.O. Box 1947, Arlington TX 76004. Retardation in Leadership. (1992).

Dybwad, G. & Bersani, H. (1995). New Voices: Self-Advocacy by Persons with Disabilities. Boston: Brookline Books.

Enough is Enough! The story of People First of Illinois. (1993 ) Illinois: Illinois Developmental Disabilities Planning Council, 830 South Spring Street, Springfield, Illinois 62704

O'Brien, J. (Ed.) (1990) Effective Self-Advocacy: Empowering People with Disabilities to Speak for Themselves. Minneapolis, MN: Institute on Community Integration.

The National Reform Agenda and People with Mental Retardation: Putting People First, (1994). Washington, D.C.: U.S. Department of Health and Human Services, Administration for Children and Families. President's Committee on Mental Retardation.

Shapiro, J. (1993). No Pity: People with Disabilities Forging a New Civil Rights Movement. New York: Times Books, Random House.

Taking Place: Standing Up and Speaking Out About Living in Our Communities. (1994). Tennessee: Self-Advocates Becoming Empowered. Tulsa ARC, 1601 South Main Street, Suite 300,Tulsa,OK 74119. Voice: (918)592-8272 Fax: (918)582-6328

Williams, P. & Schultz, B. (1982). We Can Speak for Ourselves. Boston: Brookline Books.

Acknowledgments

Excerpts of this Fact Sheet are from The Arc Fact Sheet prepared by Bonnie Shoultz (1996).

Written by Esther Lee Pederson and Tia Nelis, Capabilities Unlimited, Inc. and the Rehabilitation Research and Training Center on Aging with Mental Retardation, Institute on Disability and Human Development, University of Illinois at Chicago funded by the National Institute on Disability and Rehabilitation Research