| Between 1910 and 1965, experts described people with severe intellectual disabilities as eternal children who would never grow up. These children were at the end, not the beginning, of their development. Parents adopted this metaphor as a way of understanding their intellectually disabled children and as a model for planning a separate, safe system of services to care for them. This metaphor failed to incorporate the dilemmas of sexuality, puberty, and aging, which challenged the childlike status of people with severe mental retardation. However, twentieth century American culture could not include people who required assistance as adults without questioning the cultural assumption that normal adults were completely independent competitors in modern society.; My dissertation explores the dilemmas that parents faced in raising their children who failed to fit the American ideal of independent individualism. Intellectually disabled children were often excluded from “normal” community life and services like public schools, but were seldom provided with alternatives. Even public institutions were chronically over-crowded, under-funded, and plagued with long lists of applicants who waited years for admission. Most people with severe intellectual disabilities continued to live in the community and depend on their families for care. Parents were embittered by the professional and popular assumption that intellectual disability meant not just a restriction of ability but total dependency and exclusion from community life.; The parent advocacy movement of the 1950s and 1960s broke new ground by demanding access to services for people with intellectual disabilities as a right rather than a charity. This led to the re-conceptualization of intellectually disabled people as citizens with rights to social services and the ability to make adult decisions about their own lives. Ironically, this intellectual change, which began with the parent advocacy movement, had ambiguous implications for many parents. The attribution of rights to people with intellectual disabilities was not always followed by sufficient social services to make independence and community life a meaningful reality. Parents often found themselves still crucial as caregivers but also criticized by professionals and advocates as impediments to their children's development as independent individuals. |
