Chapter 2. Institutions, Part 1
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48 2 Institutions, Part 1 The activists profiled in chapter 1 were among the more fortunate of their contemporaries. For although some of them endured extended hospitalizations or stints in rehabilitation institutions and all were affected by disability-based prejudice and stereotypes, all of them spent the greater part of their childhoods at home with their families. From the late 1800s well into the twentieth century, however, this was not the case for millions of people with disabilities. Because the consensus of “expert opinion” during that time was that people with disabilities, particularly those labeled “mentally retarded” or “mentally ill,” should be institutionalized, having a disability often meant virtual lifelong imprisonment. The nation’s first residential institutions for people with disabilities were founded in the mid-nineteenth century by reformers such as Samuel Gridley Howe and Dorothea Dix. As Dix demonstrated in her fact-finding tours of Massachusetts in the 1840s, it was not uncommon for people with cognitive disabilities in particular, as well as people with cerebral palsy and epilepsy, to be abandoned by their families and end up as wards of the state, kept in prisons or almshouses or farmed out to those willing to provide for their care at the lowest possible cost to the taxpayer. Dix documented the result: instances of people chained to barn walls, locked into basements or attics, or kept in outdoor holding pens.1 In contrast, state-run residential schools for the blind and chronic care facilities for people diagnosed as mentally ill or mentally retarded were meant to offer some modicum of physical comfort and safety, perhaps even the possibility of an education or treatment. The impetus for the massive expansion of these institutions at the turn of the twentieth century, however, came from those who saw people with disabilities as a threat to the social order. For followers of the pseudo science of eugenics, these included those “feeble-minded” “moral imbeciles” who were by their very nature bound to be antisocial, not to mention sexually depraved, and thus likely to propagate more of “their kind.” The “threat” posed by these institutions, part 1 49 individuals was believed to be exacerbated by the increasing urbanization and diversifying of society. “What is to be done with the feeble-minded progeny of the foreign hordes that have settled and are settling among us?” asked Walter Fernald, a leader of the Association of Medical Officers of American Institutions for Idiotic and Feeble-Minded Persons.2 For Fernald and others like him the answer was obvious. Children with selected disabilities were to be isolated in institutions where they could be controlled and where they were to remain for the rest of their lives. By the mid-twentieth century this institutional system had grown into an insular and extensive disability gulag. It was also absorbing a major part of public funds budgeted to provide for people with disabilities, creating both a physical infrastructure and—since it employed tens of thousands of nondisabled staff—a professional lobby that actively impeded the development of community-based services and integrated public school education.3 Side by side with institutions for people labeled mentally retarded were those for people labeled mentally ill. Although their approach was perhaps more medical (few MR facilities purported to offer “treatment” for mental retardation), the institutions for the mentally ill were often equally brutal and dehumanizing. And for those people with disabilities who were not swept up into the state institutions and private mental hospitals, there were nursing homes and chronic care facilities , all of them isolated from the outside world, most if not all of them daily infringing on the civil and human rights of their residents. This, then, was the context in which American disability rights activists came of age during the 1940s, ’50s, and ’60s. It was this reality that shaped the parents’ movement of the 1950s and ’60s and the independent living and psychiatric survivor movements of the 1970s and beyond. Gunnar Dybwad “You have no idea how awful it was.” Born in Leipzig in 1909, Gunnar Dybwad was one of the first people in the world to perceive disability as a civil rights issue. Earning his law degree from the University of Halle, Dybwad and his wife, Rosemary Fergusson Dybwad, left Germany after the rise of Hitler, moving first to the United Kingdom and then to the United States, where he studied at the New York School of Social Work. His first career was in penal reform, advocating for the...


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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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