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Self-advocacy: What is it and where did it originate?

Self-advocacy refers to an individual’s ability to effectively communicate, convey, negotiate, or assert his or her own interests, desires, needs, and rights. It involves making informed decisions and taking responsibility for those decisions. Self-advocacy is understanding your strengths and needs, identifying your personal goals, knowing your legal rights and responsibilities, and communicating these to others.

Self-advocacy is speaking up for yourself. Until recently, it was a concept used more for adults with disabilities, but it is increasingly recognized as a skill that youth with disabilities also need to develop.

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

In 1972, the idea spread to Great Britain and Canada. In 1973, a group from Oregon attended a conference in Canada that purported to be for people with disabilities. However, this group was unhappy with the Canadian conference because they felt it was dominated by professionals, so they 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, self-advocates held international, national, and statewide conferences and began to form their own national organization, Self-Advocates Becoming Empowered, which is governed by a steering committee made up of 16 representatives. The organization 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.

People On the Go was started in 1989 by self-advocates at The Arc Maryland to be Maryland’s go-to organization for people with disabilities who want to empower themselves and educate others. This year marks the 25th anniversary of the group, which now has approximately 400 members statewide. People On the Go has played a critical role in the self-advocacy movement, contributing to major achievements for people with disabilities such as passing the ADA, closing institutions, removing the “R” word from state regulations, and creating the Maryland Department of Disabilities.

People On the Go educates students about self-advocacy and introduces them to individuals with disabilities from around the state who live meaningful and successful lives. People On the Go has strong partnerships with other organizations like the Maryland Center for Developmental Disabilities (MCDD) that also want to help shape how Maryland strives for equality, community inclusion, and real lives for individuals with disabilities.

This article was written by Tamara Goldsmith, State Facilitator & Public Policy Administrator for People On the Go Maryland. People On the Go is a partnership with the Maryland Center for Developmental Disabilities at Kennedy Krieger Institute.

For more information about People On the Go Maryland, please call 443-923-9593.

Bradley L. Schlaggar, M.D., Ph.D., Named President and CEO of Kennedy Krieger Institute

We’re thrilled to welcome Bradley L. Schlaggar, M.D., Ph.D., to the Kennedy Krieger family as our next President and CEO.

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