restricted access Chapter 18. Self-Advocates
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324 18 Self-Advocates Gunnar Dybwad was fond of telling an anecdote that perfectly illustrated the progression from the parents’ movement to selfadvocacy . In the 1950s,when he became its executive director, the Association for Retarded Children published a pamphlet titled We Speak for Them—“them” being people, particularly children, labeled “mentally retarded.” Thirty years later a group of those now-grown children formed an organization called Speaking for Ourselves—one of the many groups that comprised the burgeoning “self-advocates” movement of the 1970s and 1980s.1 “It [was] a most natural thing,” Dybwad remarked. “Originally, the persons with mental retardation were not only young, but the older ones were awkward. They didn’t have good schooling.” But with deinstitutionalization, “normalization,” and “mainstreaming”—all reforms fostered by the parents’ movement—people now labeled “developmentally disabled” began to speak out for themselves. By the mid-1970s many thousands of people formerly consigned to institutions began to enter the community, where they confronted new challenges and new choices. In Salem, Oregon, a loosely organized group of people who had been recently released from the Fairview Training Center, with the Reverend Dennis Heath as their mentor, formed the nucleus of what would become a national and then international movement. Dennis Heath “I didn’t realize that was called ‘stirring things up,’ getting the people involved . . . and speaking for themselves.” Born in 1940 and educated as a minister and a social worker, Dennis L. Heath spent much of his professional life as the “fieldwork manager” and “social self-advocates 325 work supervisor” at the Fairview Training Center in Salem, Oregon. Opened in 1908, Fairview was another of the massive state institutions in which people with various disabilities (however loosely defined) and other “undesirables” were incarcerated, many of them for their entire lives. Those committed to Fairview included “orphans, hitchhikers, promiscuous girls and people with mental illness.”2 By the time Heath arrived in 1972, the institution held several thousand people , ranging in age from infants to the elderly. “There was a guy who was kind of blind in one eye, and he kind of limped. There was no testing, no distinction between ‘mild’ ‘moderate’ ‘borderline.’ It was like, if you were different, you needed to be in Fairview.” There were other holdovers from the past besides the vague criteria for admission. As part of his job, Heath sat on a board that made decisions “around the issue of whether women [residents] would be sterilized. It would meet monthly, and review cases of who was to be sterilized, and who wasn’t. I think the sterilization board stopped around ’74, ’75.” People First began as an extension of Heath’s work tracking those Fairview residents who were beginning to move out into the community. Founded in 1974, it would become both a catalyst and prototype for self-advocates around the world. “The embryo was people talking, and running the meetings themselves , and sharing about their lives, and listening to each other.” After more than thirty years, Heath is still in contact with many of the movement’s first leaders. But although the closing of institutions like Fairview has been a definite leap forward, the benefit has also come at a cost. “In the very beginning it was easy to have these support groups, because there were all these people who were identified as having been in the institution. We’ve always had a hard time reaching out to younger people, bringing in people that have never been in the institution, that lived at home.” At the time of our conversations Heath was still active as an advocate and counselor in the Salem area. They called us field-workers. Field-workers provided follow-up to people thathadbeenreleasedfromtheinstitutionandwerelivingingrouphomes, or foster homes, around the Salem area. So I had access to people who had once lived in the institution and now were living in the community. I’ve seen pictures of the early days. When Fairview started it was crib to crib to crib. There was an inner circle of cottages and then an 326 chapter 18 outer circle, and the cottages were divided by the disability. Profoundly severely retarded, developmentally disabled folks, lived in the intensive care cottages. Originally it was outside of Salem, and they had crops all around, a community in and of itself. Everything they ate, they grew there. They had hogs, they had chickens. But by the time I got there, there were homes all around, it wasn’t isolated anymore, but...


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Subject Headings

  • United States. Americans with Disabilities Act of 1990.
  • People with disabilities -- Civil rights -- United States -- History.
  • People with disabilities -- Legal status, laws, etc. -- United States -- History.
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