Making Life Work: Freedom and Disability in a Community Group Home

1. Intellectual Disability: A Brief History

After the Second World War, institutionalization was, in effect, the professional consensus about how to deal with people diagnosed with intellectual and other developmental disabilities (such as cerebral palsy). Physicians explained to parents that “nothing could be done” for their disabled children but provide custodial care, which was too great a burden at home and held potentially serious consequences for normal siblings. In many institutions, visits were limited or prohibited for a period following admission so as not to exacerbate the difficulties of adjustment for both patients and families. Within this context, some parent groups focused on creating a larger role for families in the care of their institutionalized children. Others pressed for expanded special education in schools and social and vocational programs in communities that would enable certain children to grow up at home. In fact, a good deal of the community services that were available in the 1950s were provided by parent-based organizations . The intention was to broaden the repertoire of options, not to encroach on or replace institutions; in fact, these groups largely supported the expansion of institutional resources because of overcrowding and long waiting lists. These initial postwar efforts to broaden and expand existing services , by 1960, incorporated the aim of reforming conditions in institutions . Parent organizations laid the groundwork for what, within a decade, would emerge as a movement to transform both the nature and location of services. In the 1940s, only occasional but searing professional criticism of institutions gained press attention. Likewise, only a minority of professionals were aligned with parent reform efforts through the 1950s, but this soon changed. By the end of the next 19 1 INTELLECTUAL DISABILITY A Brief History decade, several widely publicized scandals at large state facilities galvanized the movement against the institutions. Popular media gave unprecedented attention to the abominable conditions, neglect, and abuse in institutions, portraying them as a fundamental moral failure of American society. No scandal symbolized this more, both politically and visually, than the horrors at the Willowbrook State School in New York City. In January 1972, a staff physician and a social worker were fired, apparently for their persistent complaints about conditions on the wards and for effectively organizing the parents of patients to do the same. The day after they were dismissed, the physician, Mike Wilkins, contacted someone with whom he had worked at the U.S. Public Health Service and elsewhere. The former colleague, a lawyer involved with health advocacy issues, had changed careers: by 1972 Geraldo Rivera was a television news reporter for New York’s ABC affiliate. Wilkins took Rivera and his film crew into Ward B of Building 6 at Willowbrook, which contained about eighty children in various states of undress, some manacled to radiators, some soiled, and some rocking alone in the middle of the room (Rivera; Rothman and Rothman). The images of gruesome neglect they recorded were broadcast that evening and immediately picked up by national and international media. This footage had a revelatory impact, decisively shifting the climate of opinion among the public, professionals, and politicians against the very idea of institutionalization. The conditions at Willowbrook and other institutions, in New York and elsewhere, were not exactly news to parent groups, advocates, and the growing body of professionals arguing that institutions be closed and services be provided in the community. The rhetoric of community services had come to dominate policy at a number of levels, and in some states challenges to institutional authority were already wending their way through the courts. In New York, the dearth and quality of services for people with disabilities was an ongoing political problem mired in multiple conflicts over state-federal financing schemes, turf issues among state agencies, and issues of economic development at the local and state levels. As Paul Castellani argues, the confused priorities of New York state officials unwittingly fostered the move toward a clear anti-institutional agenda among the very parent and advocacy organizations that had been so willing to work with public officials for reform. These organizations were well represented on 20 intellectual disability various state task forces established in the early 1960s to address New York’s lack of coordination and future direction of services, as well as the institutional conditions increasingly being called into question across the country. By 1965, it was clear to advocates of people with mental retardation that, despite the rhetoric of community integration , their recommendations had largely...