Dennis B. Downey and James W. Conroy (eds)., Pennhurst and the Struggle for Disability Rights (University Park, Pennsylvania: The Pennsylvania State University Press, 2020) 288 pp. $35.00, Hb, ISBN: 978-0-271-08603-3
The history of the Pennhurst State School and Hospital in Spring City, Pennsylvania stands in for a larger history of how people labelled as (intellectually) disabled were treated by society throughout the 20th century. Founded in 1903 as the Eastern Pennsylvania State Institution for the Feeble-Minded and Epileptic, it mirrors the rise of large institutions as an instrument for segregating individuals and populations seen as socially deviant. Pennhurst was typical in its swelling number of residents – by the 1950s, the complex housed more than three thousand inmates – and the resulting overcrowding, understaffing, lack of resources, neglect, and abuse. Not the least, it stands for the paradigm shift beginning in the 1970s from institutionalization to community-living. This arch from institutionalization to deinstitutionalization is the topic of the anthology Pennhurst and the Struggle for Disability Rights edited by historian Dennis B. Downey and social scientist James W. Conroy. It is best characterized as a (not always chronological and sometimes repetitive) chronology. It is most valuable for the many personal accounts of those who lived at Pennhurst, and / or (subsequently) were active in disability rights and advocacy and deinstitutionalization. Their stories and testimonies are moving, heart-breaking and would be even harder to read if the volume, with its emphasis on the successes of community living, did not also give us insight to the triumph of those who had a second life outside the institutions and in disability advocacy.
A first section places “Pennhurst in Time and Place.” Dennis B. Downey provides an overview of the history of institutions for people with intellectual disability and mental illness, and explains how the rise of eugenics reversed the idea that people with intellectual disabilities were educable and could live within the community. It explains the distinction, which then would shape life at Pennhurst for almost a century, between those considered socially useful and put to unpaid work in maintaining the institution, and those put in “custodial care,” which was little more than warehousing. A second contribution explores Pennhurst as a place designed to be a “world apart” from society, effectively segregating for decades those who were not deemed worthy of life in society. Together with a third essay they juxtapose the harsh and abusive realities for inmates with noble image Pennhurst maintained to the outside as an idyllic care home and school.
A second section explores the “Power of Advocacy” in challenging the abuses at Pennhurst and of institutionalization more in general. In an oral history, Journalist Bill Baldini, then a young reporter at a local TV station, recollects how his coincidental exposure to conditions at Pennhurst led to a frantic period of filming and research for the influential and shocking 1968 exposé Suffer The Little Children. The following essay chronicles the rise of “Parental and Organizational Advocacy.” It is useful in recounting the details for the Pennhurst context, but curiously does not draw from in the established literature on this topic for context. In from “PARC to Pennhurst” Judith A. Gran chronicles the legal principles and various lawsuits that challenged the practice of institutionalization and established the right (not necessarily realized) to life and education within the community. With the important role that Brown v. Board of Education played an important role in the history of special education, too, at least a nod to the racialized realities of disability rights advocacy would have been a valuable addition here. The personal recollections of two Pennhurst residents and later self-advocates, Jerome Iannuzzi Jr. and Betty Potts are what makes the volume really worth reading, especially given that the perspectives of those labelled intellectually disabled are still not present enough today. The history of how people came to be labelled “retarded” and put on a path of institutionalization and serf labor is a reminder that in looking at disability history we need to pay close attention to social and racial inequalities and familial abuse. In the final contribution to this section, James Conroy provides an overview over the making and influence of the Pennhurst Longitudinal Study that set out to prove the benefits of community services over institutionalization, and, significantly, insisted on including the perspectives of those affected.
The final section is concerned with the future of Pennhurst as a historical site of abuse, again standing in for other, long-abandoned and neglected asylum campuses around the country. Here, Heath Hoffmeister and Chris Peecho Cadwaalder offer a thought-provoking analysis of the problematic activities of Urban Exploration and ghost haunting which effectively turn visits to sites of serf labor, abuse, and neglect into a form of sensationalized thrill-seeking. They contrast the need to preserve such asylum grounds as historic sites of suffering with the desire of current owners to turn them into profitable real estates. Finally, a gallery of photos from various eras helps the reader visualize the impressions of Pennhurst formed by the preceding essays.
As valuable as these essays are, they lack contextual and analytical grounding in the by now vast and still rapidly expanding literature on disability rights and disability movements, the history of eugenics, institutionalization, and deinstitutionalization, human experimentation and medical ethics, special education and rehabilitation. Many of these works are both groundbreaking and eminently readable, which makes it even more puzzling that the authors did not engage with this research. This is problematic on several levels, not the least in the puzzling neglect of issues of race, gender, and social class, and the ways in which they have shaped eugenic thought, disability policy, institutionalization and resources toward deinstitutionalization, the history of disability advocacy, and the ongoing racial labelling in special education. That the history of Pennhurst is not placed in a larger history of disability and (de-)institutionalization also might lead the reader not familiar with disability history to overestimate the (by no doubt large, but not overdominating) role Pennhurst played in disability advocacy.
In sum, then, Pennhurst falls a bit short of its promising title, but still makes a valuable contribution to the field as a collection of oral histories and as a chronology of an institution and the people tied to and eventually escaping it.
Marion Schmidt, University Medical Center Göttingen