At first, people with developmental disability were spoken over. Locked away in institutions, medicated and sterilized without consent, mistreated and misunderstood, they were not in a position to be viewed as experts in their own lives. People with developmental disability did resist and advocate, but their environments and society at large limited the impact of their actions. Deinstitutionalization is the movement to close institutions, asylums, and state schools. Instead, disabled people live and learn in their communities. Activists organized, advocated, and used legal strategies to work toward the goal of shutting down abusive places like the Willowbrook State School in Staten Island, New York. Some parents and other family members were strong advocates for deinstitutionalization. They became viewed as the voice of their children.
But people with developmental disability had thoughts and opinions of their own. They had their own ideas about themselves, their disability, their community, and what they wanted life to be like. So people with developmental disability began to organize. They met up in groups. They advocated against institutions with the strength and inside information of survivors.
Self-advocates worked together to improve disability rights and fight for deinstitutionalization. Many self-advocacy groups began in the 1970s and 1980s as institutions were called into question and shut down (The Minnesota Governor’s Council on Developmental Disabilities, 2019). Mark Friedman of Speaking For Ourselves, Inc. and Ruthie-Marie Beckwith of People First of Tennessee, Inc. wrote that for early members of Speaking for Ourselves and People First of Tennessee, speaking out about personal experiences in institutions was a powerful part of their advocacy work:
They overcame their fears and lack of experience and began reaching out to their incarcerated counterparts living in institutions. The members’ efforts to expose the nature and insidiousness of their oppression were relentless. As their voices grew in number and volume, so did the resistance they encountered from family members, professionals, family advocates, state officials, unions, and other individuals and entities with extensive conflicts of interest. (2014, p. 239)
As activists, self-advocates with developmental disability faced push-back as they fought to change conditions. Friedman and Beckwith (2014) described barriers like lack of money, transportation, telephones, formal education, and literacy/numeric skills. Additionally, self-advocate group members were often forced to work in sheltered workshops and to ask permission from support staff members to attend meetings. They note that “many of such difficulties that arose were a product of ableism and the effects of incarceration and paternalism, rather than inherent in members’ intellectual disabilities” (p. 239). This reality represents the social model of disability—showing how society disables people through ableist barriers.
As self-advocacy groups grew in power, self-advocates faced danger and roadblocks. Activists with exposed the rampant abuse they had survived in institutions. People with developmental disability continued to face high rates of abuse. Even self-advocates living in the community could be punished for their activism. Friedman and Beckwith (2014) explain, “Self-advocacy chapter members fortunate enough to move out of the institutions were routinely threated with ‘being sent back’ for not complying with minor rules or failing to “fit in” to smaller, but still segregated community homes” (p. 241). Despite these dangers, self-advocates kept fighting. They helped to change their own lives and the lives of other people with developmental disability.