When I was first asked to review A History and Sociology of the Willowbrook State School, the thought ‘do we really need another book about total institutions?’ did cross my mind. What could possibly be gleaned from such a publication? Do we not know enough about the closure of the infamous Willowbrook State School (1947–1987), which, as Senator Robert Kennedy put it in 1965, housed its residents ‘in rooms less comfortable and cheerful than the cages in which we put animals in a zoo’ ? Have we not heard enough accounts like this, to have learnt all that we need to know and to ensure that they never occur again?
It seems the authors were acutely aware that these questions would be in the minds of potential readers and they address them from the outset. The foreword, written by the Steven Eidelman, raises the same questions I do, and eloquently argues that the basic point of this book is not to re-hash old arguments, but to highlight that ‘Willowbrook is really not just a historical place’ (x).
It was, of course, a real place in which many people were inhumanely and disreputably incarcerated throughout a specific period in American history (1947–1987). But, in unpicking the historical, political, economic, and sociological circumstances which bore its creation, we can see that Willowbrook, and total institutions like it, are not part of American history, but very much part of the current landscape of care for people with intellectual disabilities across the nation.
Whilst institutions of Willowbrook’s size and status have been phased out, many people with intellectual disabilities are still living in institutions, albeit known by different names; group or nursing homes. People may now have their own clothes, decent food and be situated ‘in the community’, but their rights are still being violated by the organisations which run these facilities (x).
The modern rhetoric in the USA might be for individualised care, but the political and economic climate is undermining this, and a national trend towards models of managed care being implemented to reduce costs is emerging (302). The authors draw clear and powerful comparisons between these circumstances and those which bore the creation of Willowbrook State School and rightly, in my opinion, conclude that the USA is just one fiscal cut away from the reinstatement of total institutions.
Arguments like this one are the strength of this book. It is not just another book about total institutions, it is a book about total institutions set within their historical, economic, political, and sociological context. The main points are carefully related to current debates surrounding intellectual disability in the social and political sciences.
The book was written by a multifaceted team of authors, two of whom were working on the frontline during some of the darkest days in Willowbrook’s history. Their observations, the personal accounts they gathered, and the historical data they have explored give light to what life was like for those living and working at the institution. These accounts highlight the different realities that existed within Willowbrook, and other institutions, depending on who you were, where you worked, or where you lived.
This is a well-organised academic text that is written clearly and concisely. As a non-American, albeit someone who has worked with people with intellectual disabilities across the USA (including ex-Willowbrook residents), the first two chapters – ‘A History of Institutions for People with Intellectual Disabilities’ (Chapter One) and ‘A Social History of Willowbrook State School’ (Chapter Two) – were a delight to read. They provide a rich and detailed history of the provision of support for people with intellectual disabilities in the USA from the seventeenth century onwards.
The first chapter does a good job of setting American history within the wider western context, covering issues relating to the Industrial Revolution and World War II. However, what this chapter does really well is help the reader understand how Willowbrook came to be as a result of the pioneering role the USA took in modern medical attitudes towards disability. In exploring how the USA led the way in the eugenics movement, via the imprisoning, sterilising, and euthanising of people with intellectual disabilities from the 1870s onwards, it is clear to see how Willowbrook, a place in which many of these practices continued to take place, came to be – albeit in a post-eugenics climate.
From this starting point the book moves on to unpick the specific sociological aspects of total institutions, sighting all the expected authors; Goffman, Wolfensberger, Asch, Milgram, and Zimbardo. This chapter provides the reader with a good grounding in the sociological and psychological theory needed to understand the personal accounts of ex-staff and residents that are interspersed throughout the chapter.
The voices of ex-staff and residents bring this book to life. From Chapter Three onwards they are what make this book unique and such a pleasure to read. Accounts of day-to-day life at Willowbrook (Chapter Four) and how people were viewed as humans in the institution (Chapter Five) are enriched by personal accounts collected by Reiss and Goode from their work on the ground at Willowbrook and the Pacific State School. Of course, these accounts are often difficult to read, and the descriptions hard to stomach to the point that, in places, I had to put the book down. But this is the ‘reality’ of what life was like for some of those who lived and worked at Willowbrook. Yet for as many hard-to-swallow accounts as there are littered throughout this book, there are an equal measure of stories of triumph, resilience, humanity, kindness, and love. This is human life, set within the extreme parameters of a total institution, but human life nonetheless and the authors do justice to those who lived and worked there in their no-holds-barred approach to presenting personal accounts.
In conclusion, I hope it is clear that A History and Sociology of the Willowbrook State School is more than just another book about a total institution. It is essentially a book about humanity. It ends with a plea to the reader to not think that now this book has been written, Willowbrook, or indeed total institutions overall, have ‘been done.’ That having read it, we should not just place it on our bookshelf, but rather act upon what we have learnt from its messages to ensure total intuitions like Willowbrook do not occur again. In the current economic and political climate, wherever you are located in the western world, this book provides emotive food for thought for anyone involved with people with learning disabilities; researchers, students, and professionals alike.
Norah Fry Research Centre, University of Bristol, Bristol, UK
[email protected]
© 2016 Victoria Mason
http://dx.doi.org/10.1080/09687599.2016.1167363