Disability at the Dawn of the 21st Century and the State of the States, edited by David Braddock. Washington, DC: American Association on Mental Retardation, 2002.
This book provides a dramatic and comprehensive overview of the history of disability, particularly developmental disability, in our society. Part I employs multiple lenses to explore a detailed and, as yet, untold history of disability in the Western world, ending with a focused lens on public finances spent on disability-related programs in the United States. Part II treads on familiar ground for the authors, updating the status of services and spending for developmental disabilities in the United States as a whole, and state by state, through the year 2000. Finally, in Part III, readers are carried on a comparative journey of public policy on developmental disability services in two states. In this review, I provide an analysis of each part of the book, outlining the key strengths and limitations, and delineating the utility of information for various stakeholders in the disability field.
In the first chapter of Part I, an updated version of a paper that was previously published in the Handbook of Disability Studies (2001), the authors take on the daunting task of chronicling the “institutional” history of disability in Western society. Starting at the very beginning, prehistory, and moving through each age to the present, a myriad of information and data are presented. Disabilities are categorized into one of three groups: mental illness, intellectual disability, and physical disability (with a special emphasis on deaf and blind populations). Key topics discussed across the ages include the evolution of societies' definition of disability, societal and family support for persons with disabilities, diagnosis and treatment initiatives, discrimination, and civil rights for and among persons with disabilities.
The authors place strong emphasis on the connections between disability and poverty, contending that, beginning in the 17th and 18th centuries, societal views toward poverty became increasingly negative. Because persons with disabilities were often among the poor, they became an ostracized group. Why this transformation of views evolved over time is not clear from the chapter. Perhaps as standards of living rose in the Western world, fewer persons were in poverty overall, which resulted in a minoritization of the poor, including persons with disabilities. What is clear from the chapter is the enduring relationship between disability and one's ability to work. Regardless of one's disability, if an individual could support him or herself by working, there was less or no stigma attached to the disability. The authors demonstrate this through the ages to the present day.
What I found most overwhelming in this chapter is the degree of stigma suffered by all disability groups over time. The authors touch on pivotal dark periods for people with disabilities, some of which may be new information for even the most well-informed readers. For instance, the authors remind us about the practice of infanticide in ancient Greece and Rome, witch hunting through the early 1700s, barbaric “voluntary treatments” for disability (especially mental illness), freak shows, the growth and misuse of custodial asylums/institutions, and the eugenics movement (resulting in the death of as many as 275,000 persons with disabilities in Germany alone).
Probably one of the greatest strengths of this chapter is the authors' attempt to synthesize a history of disability across all types of disability. This is exceedingly difficult given the breadth and volume of information and the ambiguity surrounding definitions of disability over time. A primary goal of the authors was to demonstrate that although disability groups were often segmented by type of disability over time, one can trace parallel paths across groups. This is an important, yet commonly underrecognized, historical phenomenon. Although the cross-disability synthesis is laudable, I found the chapter difficult to follow at times. Subtopics by period of history were often not consistently presented, and the authors seemed to move haphazardly between discussions of disability groups. Further, it was sometimes difficult to follow distinctions or parallels across nations and continents. Overall, I believe it was well worth the effort to combine disability groups; however, the chapter may have been improved by focusing on a shorter time period.
In the second chapter of Part I, the author presents an extended version of an article previously published in the American Journal on Mental Retardation (AJMR). The chapter provides a detailed overview of public finances for all disability-related programs in the United States in 1997. What becomes quickly obvious when reviewing the chapter is the incredible scope of public investment in disability programs. The author contends that $293 billion were spent on disability programs in 1997, representing 12% of total federal–state expenditures. Although it was unclear how or whether persons without disabilities were excluded from the totals for programs such as Medicare, Food Stamps, or HUD payments, the point is still well-taken that disability expenditures are a serious feature of the landscape of public finances in the United States. The greatest strength of the chapter is the detailed attention paid to long-term care spending, with comparisons of institutional versus community spending, and a comparison of fiscal effort across states. One of the most important findings is that 71% of spending for long-term care for people with physical disabilities was allocated for institutional care in nursing homes. This is a finding that will grab immediate attention from policymakers and advocates.
Part II of the book, “The State of the States in Developmental Disabilities,” begins with an outstanding summary of services for persons with developmental disabilities across all states, followed by detailed graphics on a state-by-state basis. As in previous versions of this study, the findings and data are presented in such a clear manner that I was easily riveted by how my state (Georgia) compares with others (and with national averages). I was able to discern, for example, how well Georgia compares with other states in the level of fiscal commitment to developmental disabilities services, its track record in supporting institutional versus community services, its commitment (or lack thereof) to supported employment and family support, and the level of state/local funds that are currently unmatched with federal dollars. The chapter concludes with a helpful section covering timely issues such as aging caregivers, the growing demand for services, waiting lists, civil rights and advocacy, and litigation across states. This remains an excellently researched and comprehensive resource for policymakers, but seems a particularly important data source for advocates.
In Part III of the book, the authors present a detailed comparative study of forces shaping developmental disabilities services (comparing Michigan with Illinois through 2000). Although I sometimes found myself getting bogged down with the details of intrastate politics, the big picture came into focus through effective summaries of each state's “case,” a thorough comparative analysis, and useful tables outlining key findings. This study represents a well-reasoned and sound qualitative analysis that can serve as a model for policymakers. A critical finding in the chapter was the importance of coalition-building around the ideological goal of developing a community services system (versus an institutionally based system). Even though both states were experiencing poor economic conditions, the strong advocacy and coalition-building role of the Arc in Michigan steered state decision-making on the path that would maximize spending in the community versus a continued investment in institutionally based services in Illinois. Another interesting finding in the study was the relationship reported between each state's history of commitment to civil rights for persons with developmental disabilities and its eventual commitment to the development of community services.
Overall, although I understand the authors' intentions of beginning the book with a wide historical lens, covering all disabilities over time, and ending with a focused analysis of developmental disability services in two states, I question the efficacy of this approach. By combining information and data across disabilities in Part I, the authors make a strong statement concerning the need for advocates and policymakers to begin conceptualizing disability with a wider perspective, acknowledging the strength and logic of a global disability movement. By narrowing the focus throughout the rest of the book, they lose some of the punch of the opening themes. Despite this criticism, I highly recommend this book for a variety of audiences, including policymakers, professionals, students, family members, and advocates. It is exceptionally well-researched, well-written, and represents the best of knowledge in the disability field today.