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Providing information, education, and training to build knowledge, develop skills, and change attitudes that will lead to increased independence, productivity, self determination, integration and inclusion (IPSII) for people with developmental disabilities and their families.

Moments in Disability History 17

The Self Advocacy Movement

In 1969, Dr. Bengt Nirje, Director of the Swedish Parent Association, delivered his paper, "Towards Independence," at the 11th World Congress of the International Society for Rehabilitation of the Disabled in Dublin, Ireland. The paper traced recent developments in the self advocacy movement in Sweden that he himself had initiated. 

Giving individuals with developmental disabilities the opportunity to experience regular life in the community and making their own decisions was viewed as radical at the time, but a movement was gaining momentum.

Following the World Congress, parents and members of the Swedish Association planned their own first national conference in Sweden to address issues related to self-determination. These efforts then spread to England in 1972.

In 1973, Canada held its first self-advocacy conference in British Columbia. Following the Canadian conference, eight residents or former residents of the Fairview (Oregon) institution met on January 8, 1974 in Salem, Oregon. Five months later, the self advocates were learning the basics about meetings.

Dr. Bengt Nirje
Dr. Bengt Nirje

When the time came to decide on an organization name, the discussion became more energetic and heated – until a lone voice in the room shouted, "We are people first." Thus, the name "People First" became associated with self advocacy organizations and the clarion call for the movement that was gaining strength worldwide.

Video: 1974 People First Conference Footage (Valerie Schaaf)

The emergence of self-advocacy in the 60s and 70s came at a time when individuals with developmental disabilities were moving out of large state institutions.

Valerie Schaaf
Valerie Schaaf

David Ferleger, a long-standing champion of the rights of people with developmental disabilities, filed the landmark Halderman v. Pennhurst State School and Hospital case in 1974. The Pennhurst decision was the first federal court decision to hold that there is a right to community services for people with disabilities. In this video, David Ferleger reflects on how disability rights have developed over time through the efforts of change makers such as Dorthea Dix, and the grassroots and community organizing work by parents and self advocates.

David Ferleger
David Ferleger

Still, the barriers to integration were significant with family members and professionals holding on to attitudes that persist today, that individuals with developmental disabilities aren't capable of learning, living, and working in the community or making decisions about their personal lives. 

Regardless of these barriers, the self advocacy movement gained strength in the 1980s. Only twenty years after its origins in Sweden, Rosemary Dybwad was photographed carrying a banner in a march with self advocates from the gates of the Belchertown State School, a state institution in western Massachusetts, to a meeting in the town. This was one of the earliest rights demonstrations of people with developmental disabilities.

The momentum continued. Self advocates began creating their own groups and organizations, planned their own conferences, conducted their own meetings, worked on their own issues, and then started joining existing organizations.

In 2012, Self Advocates Becoming Empowered (SABE), held their national conference in St. Paul, Minnesota. The Conference was hosted by SABE and Advocating Change Together, Inc. and attended by more than 650 self advocates. The theme, "It's All About Fairness," was carried out through 60 workshops, a Human Rights Fair, and an art exhibition featuring the works of Minnesota artists with disabilities. A collection of photos by Tom Olin, National Disability Rights photographer, captured the many activities of this national self advocacy conference.


Parallels In Time: VII. The Independent Living Movement 1970 – Present: B. Origins of the Self-Advocacy Movement
We Are People First

Parallels in Time 2: Drs. Gunnar and Rosemary Dybwad on Pioneering Parents

The Evolution of Disability Rights Litigation: The Arc of Disability Rights Litigation

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This project was supported, in part by grant number 2001MNSCDD-03, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official ACL policy.