by Bonnie Shoultz, Center on Human Policy
Sometimes I feel like nobody pays attention to what I want or like nobody believes I can do anything for myself. I don’t even know how to speak up and show people who I really am. These feelings are all too common among people with mental retardation and other developmental disabilities regardless of where they live, whether they live with family members, in community services, or on their own.

For many people across the country and around the world, involvement in the self-advocacy movements has built self- confidence, supported self-determination, and provided opportunities for learning about and contributing to their communities and their countries.

What is self-advocacy

“Self-advocacy means that individually or in groups (preferably both), people with mental retardation speak or act on behalf of themselves or others or on behalf of issues that affect people with disabilities.” (Adapted from Williams & Shoultz, 1982). The Arc’s position statement on Self-Advocacy states that “self-advocacy means acting and communicating for oneself” (1990). The Arc in its video and handbook, Self-Advocacy: Supporting the Vision, also points out that self-advocacy can apply to anyone who speaks up for, defends, or advocates for himself or others.

In what way is self-advocacy a movement?

When we speak of “the civil rights movement,” “the parents’ movement,” or “the independent living movement,” we are referring to something like a crusade, powered by people who have been directly affected by oppressive attitudes and practices, which has fostered change in our society. The self-advocacy movement is just such a force. Today, people with mental retardation and other developmental disabilities are on national and state boards and committees, are presenters at major conventions, and are a voice for themselves and others who have similar disabilities.

What is the history of the self-advocacy movement?

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

In 1972 the idea spread to Great Britain and Canada, and in 1973 a group from Oregon attended a conference in Canada that purported 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,” because they felt that their disabilities were secondary to their personhood. From there, the idea of self-advocacy spread across the United States.
Along the way, they have help international, national and statewide conferences and have begun to form their own national organization, Self-Advocates Becoming Empowered, which is governed by a Steering Committee made up of 16 representatives. It was formed in September 1991 at a national conference in Nashville, Tenn., where participants voted to have a national coalition of state and local organizations.In 1993, there are at least 27 statewide self-advocacy organizations, some having as many as 75 local chapters and some with as few as two or three. 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.

Why are self-advocacy groups important?

Self-advocacy groups typically give people with mental retardation and other developmental disabilities their first and most consistent opportunities to develop membership and leadership skills. 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 support 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.

What are some barriers to the formation of self-advocacy groups?

People with mental retardation who wish to form a self-advocacy group face many barriers. They need recognition of their aspirations, information about self-advocacy, and support to accomplish the initial tasks. They must identify a meeting place, find ways of communicating with other potential members, and deal with transportation problems. Typically, they need allies to help them overcome these barriers, but these allies may be difficult to find.

How do people overcome these barriers?

Potential group members often begin by talking to people and defining their goals. Once a decision has been made to form a group, they can assume responsibility for many of the beginning steps. They can also start to ask for assistance with the steps they don’t know how to tackle.

Allies (citizens, parents or disability agency staff members who understand the importance of self-advocacy and who are willing to help) can assist with many of the tasks in forming a group. Almost always, self-advocacy groups are assisted by non-disabled helpers, often called advisors. The advisor(s) to a group should be chosen by the group for this role, and may be one of the initial group of allies who volunteered their time to the group.

What do local chapters of The Arc do to promote self-advocacy?

Local and state chapters of the Arc have different degrees of involvement in promoting self-advocacy. The video and handbook, Self-Advocacy: Supporting the Vision, are produced by The Arc, national headquarters, and are excellent resources for chapters that are interested in helping groups get started or in supporting groups that exist. These materials point out that effective self-advocacy groups help their members to become self- determining. By empowering the members to make the decision about the group and its individual members.

On the other hand, an organization that controls a group (e.g., by making it into a program, requiring it to “clear” the decision it makes, or interfering with the problem-solving process) nullifies the concept of self-advocacy.

Local and state chapters of The Arc often provide meeting space, clerical support, funding for expenses, information resources, transportation, and people support to self-advocacy groups. They also very often involve group members in chapter activities, including membership on the board or on committees.

What are some resources for learning more about self-advocacy?

O’Brien, J. (Ed.). (1990). Effective self-advocacy: Empowering people with disabilities to speak for themselves. Minneapolis, MN: Institute on Community Integration.

William P., & Shoultz, B. (1982). We can speak for ourselves. Boston: Brookline Books.

Materials available from The Arc, P.O. Box 1047, Arlington, Texas 76004, (817) 261-6003. (Prices include shipping and handling.)

A Call to Action: The Roles of People with Mental Retardation in Leadership. (1992). A handbook outlining the proceedings from the leadership forum held during The Arc’s 1991 national convention. Discusses barriers and strategies to supporting leadership of people with mental retardation. 1-9 copies, $2.50 ea.; 10-29 copies, $1.50; over 29 copies, $.75 ea.

Bill of Rights Series. (1990). These materials were prepared for use in helping to educate high school students with mental retardation about our constitutional system of government. These materials help people learn about their rights and responsibilities as citizens of the U.S. and about the history of our Constitution. $5.00.

PASS Q & A. The Arc PASS Project (1992). A fact sheet for self-advocates on the Social Security Administration’s Plan for Achieving Self-Support work incentive program. Single copies free by sending self-addressed, stamped envelope.

Self-Advocacy Bibliography. (1992). Books, pamphlets, video cassettes and other material on self-advocacy from around the United States and Canada. Single copies free by sending self-addressed, stamped envelope.

Self-Advocacy Program Directory. A listing of self-advocacy groups in the U.S., Canada and Mexico. $3.00.

Self-Advocacy: Supporting the Vision. The Arc of the U.S. and The Arc of New Mexico. (1992). An accompanying handbook to the video. Provides additional information and detail on the importance of supporting self-advocacy and steps to organizing a self-advocacy group.

Voting. (Revised 1992). A brochure for self- advocates. Answers questions about voting: What is voting? Who can vote? When and how can I vote? Single copies free by sending self-addressed, stamped envelope. $13.00 per 100.

Voting: Preparing for Citizenship – A Guide for the Teacher and Citizen Advocate. (Revised 1992). Flier on voting. Single copies free by sending self-addressed, stamped envelope. $13.00 per 100.

Self-Advocacy Position Statement. (1990). Single copy free.

This article was prepared by the Research and Training Center on Community Integration with support from the National Institute on Disability and Rehabilitation Research. No endorsements by the U.S. Department of Education of the opinions expressed should be inferred.