In A History and Sociology of the Willowbrook State School, David Goode, Darryl Hill, Jean Reiss, and William Bronston detail everyday life inside the infamous New York State institution where inhumane treatment of its residents prompted a class action lawsuit and spurred deinstitutionalization in the state. They also seek to explain how those conditions came to be by interrogating the role of individuals and social structures in creating Willowbrook and other institutions like it. The authors note Willowbrook's dual significance in disability history, writing that the institution "is famously both a scarlet letter and a beacon—a symbol of shame and pride… It is symbolic of public indifference to people with disabilities that has characterized their treatment throughout history and of the power of citizens to confront and defeat socially organized evil" (5). Schools in name only, such institutions contained barren, unfurnished wards filled with scores of partially clothed and naked residents who rarely ventured outside of the facility's walls. Infection and disease were rampant, particularly Hepatitis, and at Willowbrook researchers performed a variety of medical experiments on residents without consent. Death was commonplace. In this quest to help the reader to "remember and understand" what happened at Willowbrook, the book goes beyond recounting and analyzing Willowbrook's past. The authors also write as activists, calling for the closure and abandonment of all institutions for people with disabilities.

In this way, the book contributes to literature on institutionalization, deinstitutionalization, and policy and activism for people with disabilities more generally. Though Willowbrook has had a prominent place in the public discourse around institutions and the effort to close them down, it has not been the subject of many full-length books. The two other major sources on Willowbrook are Geraldo Rivera's Willowbrook: A Report on How it is and Why it Doesn't Have to be That Way and David and Sheila Rothman's The Willowbrook Wars. 1 Rivera's publication is largely a first-hand account of his own role in exposing the horrific conditions at the institution, and the Rothmans' work focuses almost singularly on the legal case that eventually ordered Willowbrook's closure. In contrast, Goode, et al hope to provide "evidence based explanations" for the abuse and neglect found at Willowbrook, and to incorporate the perspectives of former residents and staff as major source material (3). The authors cite studies of other institutions for people with developmental disabilities, such as Fernald and Belchertown State Schools in Massachusetts, but A History and Sociology surpasses these works with a close analysis that goes beyond a mere recounting of events. 2 Likely thanks to the firsthand experiences of several of the authors in working in similar institutions and advocating for their closure, this book joins newer works such as Liat Ben-Moshe, Chris Chapman, and Allison Carey's Disability Incarcerated in combining scholarship with a commitment to social justice, rather than regarding them as discrete projects. 3

The book begins with a simple, yet useful concept for understanding Willowbrook (and in effect, all large institutions), arguing that there were "many Willowbrooks," meaning that life within the institution was often varied (12). This concept accounts for seeming discrepancies in the historical record, particularly in oral histories, but also highlights a main tenet of the book, which is that social structures and systems shape human behavior. On a campus as large as Willowbrook, with a population at its height of more than 6,000 residents, the social situation in any one building or on a particular ward could be very different, depending on a variety of factors: type and degree of disability, the staff and administrators in charge, and additional support available from staff, families and/or grant dollars. 4 The "many Willowbrooks" concept also makes comprehensible the variety of insights provided by the authors. From William Bronston's perspective as a medical doctor on some of the worst wards of the institution and as an activist who helped to close Willowbrook, to Jean Reiss's role as a nurse on a relatively privileged ward, to David Goode's experiences as a sociologist in similar institutions and as an academic, to Darryl Hill's research as a social psychologist, each author offers a unique perspective on the institution.

As indicated by the phrase "socially organized evil," the book trends more toward sociology than history, and relies on the base assumption of sociologists that "social situations, their expectations and demands, shape the behavior of individuals subject to them" to explain what occurred at Willowbrook (5). The first two chapters provide "A History of Institutions for People with Intellectual Disabilities," and "A Social History of Willowbrook State School," while the final four chapters apply sociological analysis to explicate the social organization of the institution and the results for staff and residents. These latter chapters are the most rewarding of the book. The first chapter provides important context to the rise of institutions for people with intellectual or cognitive disabilities, but treads familiar ground and is more a synthesis of secondary sources than original research. The second chapter relies heavily on newspaper sources and is largely a chronological look at the structural development of Willowbrook, its population growth, and living conditions.

Perhaps most helpful to historians is the authors' description of the ways in which New York City has long used islands to house (and isolate) its unwanted persons, including "indigent, criminal, ill, poor, and disabled populations" (26). From the 19th century, Randall's Island, Ward's Island, and Blackwell's Island were all used in this manner. The authors also note that "Staten Island has a long history of institutions being built on it, including quarantine hospitals, orphanages, poor farms, and homes such as Sailor's Snug Harbor," as well as a history of Staten Islanders opposing such institutions and the use of its land as a "dumping ground" (50, 57). The borough was often targeted for these purposes "because the island was not linked by bridge or tunnel to other boroughs and because it had a lot of undeveloped land…" and therefore was relatively cut-off from the rest of the city (101). 5 This background reveals a historical fear of 'other' populations (as well as an impulse to provide social services), and also anticipates later opposition to deinstitutionalization, or moving people with disabilities out of institutions and into community residences.

Like many scholars of institutions, the authors look to Erving Goffman's now classic concept of the 'total institution' to characterize and explain Willowbrook's environment and structure (see Chapter 3: "A Sociology of Total Institutions"). 6 They argue that it was the highly stratified system of the 'total institution,' in which staff has total power over residents and each group has a particular "moral overlay… in which the large group is seen as sick, bad, inferior, blameworthy, and so forth, and the staff as representing the good, normal, and powerful," that created the conditions for abuse and neglect (109). In this closed system, each group took on a particular role: for the staff, it was the role of controller and surveillor, and for the residents, one in which they conformed to staff's low expectations, and so-called 'acting out' was their only method of attracting attention or interacting with their environment. Therefore, the authors argue that, "[d]espite the fact that there was widespread neglect and even abuse, most staff did not act the way they did because they were sadistic or unusual in some way, predisposed to hurting or neglecting people, any more than patients acted the way they did because they were retarded" (125). Importantly, the authors insist that their conclusions should not be read as an "apologia" for institutions or those who worked within them. Rather, their analysis is meant to reveal the ways in which people who live or work in such places are "people just like you or us, but people who found themselves in a bizarre, alien landscape not of their own making…" and whose reactions need to be considered as part of those conditions (126). At the same time, Goode, et al provide an implicit argument against reforming such institutions rather than closing them; total institutions inherently create these conditions, and no amount of additional staff or money can 'fix' this.

The remaining chapters of the book reveal further details about the social structure of Willowbrook and the violence and deprivation found within its walls. In their effort to rely on first-hand observations of the institution, the authors quote at length former staff and residents, and particularly Reiss and Bronston, in their exploration of issues such as Physical Environment, Violence, School, Social Control, Worker Solidarity, and Death. 7 Chapter four in particular relies on long quotations and excerpts, which are subsequently contextualized and analyzed by the authors. While the result is a somewhat disjointed text, the extended quotes are powerful, and particularly those from former residents and from Bronston. This strategy points to what seems to have been the most difficult part of writing this book: combining the voices of four very different authors into one streamlined text. Despite these stylistic difficulties, the content shines through, and serves as a potent reminder of the lives at stake in institutions such as Willowbrook.

Ultimately, A History and Sociology of Willowbrook State School provides a detailed analysis of one of the most infamous institutions, as well as a valuable introduction to institutionalization and the sociological study of institutions more generally. It achieves its goal of "help[ing] us remember and understand" what happened at Willowbrook and similar facilities, and convinces the reader that no such institutions should remain open (xii). Importantly, the authors argue that similar abuse and neglect of people with disabilities may be just "one budget cut away," a scenario frighteningly possible and even likely in our current political and economic climate (129). At the same time, the book makes clear that we cannot be contented with the reforms already instituted. In a powerful Foreword to the text, Steven Eidelman reminds us that: "Institutions, even if they do not smell, even if they are not overcrowded, even when they try to get people 'into the community' (as if the community were merely a physical space), even when people confined there have their own clothes, possessions, and decent food, are still violating the rights (let alone the dreams and aspirations) of the people living in them" (x).

Endnotes

  1. Geraldo Rivera, Willowbrook: A Report on How it is and Why it Doesn't Have to be That Way (New York: Vintage Books, 1972); David and Sheila Rothman, The Willowbrook Wars (New York: Harper & Row, 1984).
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  2. Robert N. Hornick, The Girls and Boys of Belchertown: A Social History of the Belchertown State School for the Feeble-minded (Amherst, MA: University of Massachusetts Press, 2012); Michael D'Antonio, The State Boys Rebellion (New York: Simon & Schuster, 2004).
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  3. Liat Ben-Moshe, Chris Chapman, and Allison C. Carey, Disability Incarcerated: Imprisonment and Disability in the United States and Canada (New York, NY: Palgrave Macmillan, 2014).
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  4. In 1964 Willowbrook had "6,100 residents, making it the largest institution of its type in the United States and possibly in the world," 74.
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  5. Staten Island was not connected by bridge to the other New York boroughs until 1964 via the Verrazano-Narrows Bridge, 50.
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  6. See Erving Goffman, Asylums: Essays on the Social Situation of Mental Patients and Other Inmates (Garden City, N.Y.: Anchor Books, 1961).
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  7. Chapter four subtitles.
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Copyright (c) 2015 Kathryn Lawton



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