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Public Culture 13.3 (2001) 557-579
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When Caring Is Just and Justice Is Caring:
Justice and Mental Retardation
Eva Feder Kittay
"Praise to you, Lord God, king of the universe, who varies the forms of thy creatures." So begins an ancient Hebrew prayer which is to be recited upon encountering an individual with "deformities."
Wolf Wolfensberger, The Principles of Normalization in Human Services
When speaking of a person labeled "profoundly mentally retarded" emphasize "profound."
David Hingsburger, First Contact: Charting Inner Space
Among the various human forms alluded to in the Hebrew prayer, mental retardation appears to be one of the most difficult to celebrate. 1 It is the disability that other disabled persons do not want attributed to them. It is the disability for which prospective parents are most likely to use selective abortion (Wertz 2000). And it is the disability that prompted one of the most illustrious United States Supreme Court Justices to endorse forced sterilization, because [End Page 557] "three generations of imbeciles are enough." 2 The mentally retarded have at times been objects of pity, compassion, or abuse by their caretakers and society at large. But they have rarely been seen as subjects, as citizens, as persons with equal entitlement to fulfillment.
Mental retardation comes to the public's attention in sensational stories that expose appalling forms of abuse. We encountered the horror decades ago in Look magazine's photo exposé "Christmas in Purgatory" and, more recently, in the heavily illustrated article in the New York Times Magazine showing conditions at Hidalgo in Guadalajara, Mexico, one of many "Global Willowbrooks" (Winerip 2000); or closer to home, in the Washington Post's coverage of the unexplained and uninvestigated deaths of mentally retarded people living in the city-funded group homes of the nation's capital (Vobejda 2000). And we gasp at the inhumanity of those entrusted with the care of extremely vulnerable people. We wonder: How can this happen? How is it that we allow this to occur?
Although we occasionally hear of these extreme cases of abuse, the victimization of severely intellectually disabled persons is more pervasive than these isolated examples suggest. Many individuals with mental retardation, especially when it is severe or profound or compounded by other disabilities, have been unaffected by the important strides made by other people with disabilities. Advocates of disability rights have insisted that the independence and productivity that are essential to being considered equal citizens in a liberal society are no less attainable for the disabled than for the nondisabled. They have argued that their impairments are only disabling in an environment that is hostile to their differences and that has been constructed to exclude them. Yet, the impairment of mental retardation is not easily addressed by physical changes in the environment. Although a significant number of mentally disabled persons have been moved out of large state institutions into smaller, community-based facilities or independent apartments and are employed in supportive environments, most will need to be financially supported or to subsist on very low salaries. Of all disabled people, the severely mentally retarded have least benefited from the inclusion fought for by the disability community (Ferguson 1994).
Perhaps this should not be surprising. The movement for the rights and inclusion of people with disabilities has followed a blueprint developed by persons of color, women, and gays and lesbians. All of these attempts by the marginalized to be recognized and fully enfranchised demanded that the practice of liberalism be [End Page 558] consistent with its tenets of universal equality and freedom. All the formerly excluded have insisted on no longer being silenced, on having their voices heard. But for many with severe mental retardation, such a demand for voice appears futile. Even though other movements of inclusion have challenged the liberalism that they nonetheless invoked, the inclusion of people with mental retardation may well be liberalism's limit case, just as it is a limiting case for the demands of many in the disability community. Liberalism invokes a notion of political participation in which one...