Learning to Walk Slow: America's Partial Policy Success in the Arena of Intellectual Disability

The history of policies affecting individuals with intellectual disabilities has received attention from social historians interested in gender and family, from the emerging discipline of disability studies, and from scholars interested in the evolving role of eugenic arguments and medical genetics in American life. That history has received less systematic study from the community of policy analysts and scholars traditionally concerned with welfare, poverty, and public health. This is unfortunate because the history of policies affecting intellectual disability offers at least three significant lessons.

First, this history underscores the role of compassion as a valuable but ambiguous political asset for mobilizing resources. Most existing accounts, including James Trent's essential Inventing the Feeble Mind, emphasize the influence of class ideologies, racial antagonism, eugenics, family, and gender roles in shaping public policies, clinical interventions, and social norms regarding persons living with cognitive disabilities.¹ In a more specialized study, Paul Castellani emphasizes the importance of political economy, tracing out the intricacies of institutional closure and Medicaid policy that affected immediate stakeholders.² Neither of these studies captures the distinctive role played by persons with intellectual disability and their caregivers, or the interplay between the social politics of intellectual disability and the intricate web of institutions and interventions that serve these citizens and their families. While interest-group politics, narrowly construed, can help analysts understand why public sector unions might try to protect jobs in institutional care, it cannot explain the dramatic shift from institutional to community-based care. Nor can it explain why federal, state, and local expenditures on services for intellectual disability have strongly increased over decades. Traditional interest-group politics cannot explain successful litigation that changed the face of American education, health care, and workplace to embrace disabled persons or the remarkably broad acceptance of the Americans with Disabilities Act (ADA), a complex, costly, and often burdensome federal law enacted under a Republican administration.

The intellectually disabled are often depicted in a disparaging light, most recently and frankly in The Bell Curve. Yet from Pilgrim's Progress to Forest Gump and Life Goes On,³ disparaging images have coexisted with sympathetic portrayals that bring different resonances for public policy.⁴ Aside from dramatic imagery, fiscal accounting reveals the latent generosity of an American welfare state that draws stark distinctions among recipients of public help. The same society that stigmatizes millions of people deemed unworthy of help proves surprisingly generous toward those, such as intellectually disabled persons, it deems in genuine need of help. The same history suggests that compassion can bring its own ambiguous implications in framing policy debate. Appeals to compassion help to elicit public resources for custodial care and treatment to keep persons with intellectual disabilities clean, safe, and healthy. Such appeals do not elicit sustained efforts to address more complex, multifaceted challenges faced by disabled persons.

Second, this history underscores the role of family caregivers as political actors and as specific objects of public concern. A key political dilemma of traditional AFDC was that voters and policymakers wished to help low-income children but seemed unhappy about the prospect of subsidizing the unmarried mothers with whom most such children lived.⁵ No such dilemmas arose in intellectual disability. Drawn from a broad cross section of society, family caregivers have been performing an honored, increasingly public role. Drawn together by exigencies of educational, health, and social services, mobilized by organizations such as ARC, caregivers marshaled impressive political resources to advance their interests at every level of government.

Third, the policy history of intellectual disability underscores inherent limitations of the American welfare state in serving even those distinctive groups it wishes to treat well. Persons living with intellectual disabilities and their families receive more generous funding and services than do other groups. Yet they encounter obstacles imposed by means-tested programs, decentralized interventions that receive limited bureaucratic direction or oversight, and age-based interventions that are often ill-suited to the needs of intellectually disabled adults.

For persons with intellectual disability and their caregivers, policy history provides reason for optimism because it reveals how...