Significant Disability: Issues Affecting People With Significant Disabilities From a Historical, Policy, Leadership and Systems Perspective. E. D. Martin, Jr. (Editor). Springfield, IL: Charles C Thomas, 2001.
Historically, the field of disabilities has had very few first-hand accounts of people who were institutionalized. The Holocaust has been used to compare the plight of the prisoners in concentration camps to those people who were institutionalized. In his exposé entitle Night, Wiesel (1960) recounted his experiences in Auschwitz and Buchenwald, and told of horrific and inhumane treatment that was government sanctioned and supported by the Nazi society at large. The same can be said for institutions: they were supported whole-heartedly by government at the time, principally because this was thought as the best treatment, which, ironically, was acceptable by all three branches of government: judicial, legislative, and executive. To that end, millions of dollars were used to support institutions for generations.
Unlike Wiesel (1960), however, there is very limited, if any, first-hand accounts of the atrocities that were frequent and commonplace in the institutions for the persons with disabilities. Yet, Martin and his contributors frame the time and events of the institution in a way that is thought-provoking and humbling. There are accounts from administrators who knew in their hearts that what they were doing was acceptable, from a societal point of view, but were very much lacking from the service end and humanitarian end, of the right thing to do.
The right thing to do (i.e., closing institutions and demanding humane and progressive treatments, research, and professional training to allow people with disabilities to achieve and accomplish as much as they could) sadly came only after significant and scandalizing reports were shown to a shocked public and governmental officials. Law suits, consent decrees, and finally, legislation put the stop to our own Holocaust: the institutionalization of people with disabilities in the United States of America.
Thus, the first part of Martin's text deals with the historical issues of institutionalization: their “need,” their founding, and their ultimate movement of closing. We need to know of the history of institutions and society's tacit approval of these horrible places so that they never will be used as a placement option for people with disabilities again.
In the second part of the book, Martin weaves the opinions, attitudes, and insights of first-hand accounts of the current predicaments of individuals with developmental disabilities and their families: the insensitive health care system, the scant services available to people with disabilities and their families, and the devastation to the expectation of parents who were simply not prepared to deal with this challenge.
These first-hand accounts, by far, are the most grounded that readers can take away from these issues. All the theory and hypothesis that college students experience in their classes at the higher educational level is made more real and more functional as these accounts describe their struggles.
Clearly, this is the strength of the book: mixing the horrible past with the realities of the present. The first-hand accounts touch on all of the contemporary issues that people with disabilities and their families struggle with: securing funding and the nemesis of insurance companies; limited, if any, transportation services; the difficulties with inclusion; the structuring of the Individualized Educational Program; career and employment issues; the never ending stereotypes; the chronic issues of direct care staff—their lack of training, ongoing turnover; and more. New professionals in the field need this text to understand that these are the real issues in which the field is now embroiled.
In the last part of the book, Martin analyzes the current issues and policies that are -focused and concluded in a way that allows readers to search for solutions of current problems and problems yet to come. He concludes with the oft-cited metaphor of a journey for individuals with developmental disabilities and their families. Although there is truly never a “good” time to have disabilities, the journey is a much better one in the 21st century than it has been in all of the world's past treatment of this population.
This text would be appropriate as a primary source in the field of disabilities, human services, or teacher-training programs. Martin and his contributors strike an appropriate balance of past, present, and future. This book makes readers think about where we have been and where we need to go. In many ways, Martin's text makes us want to respond.