Review: Pennhurst and the Struggle for Disability Rights, edited by Dennis B. Downey and James W. Conroy

Abstract

While important to disability historians, the name Pennhurst is almost unknown to those who study mainstream American history. The editors of Pennhurst and the Struggle for Disability Rights seek to address this oversight as this volume explains the importance of Pennhurst State School and Hospital to “one of the great, if unrecognized, freedom struggles of the twentieth century” (8). In mid-twentieth century America, over two hundred thousand Americans labeled as mentally retarded were warehoused in institutions like Pennhurst, euphemistically titled schools or asylums or hospitals. By the turn of the twenty-first century, that number had dropped precipitously, most of the facilities were closed or significantly downsized, and former institutional residents were now living and often thriving in their own communities. Much of this transition from institution to community had to do with the battles fought in the court system by Pennhurst residents, their relatives, caregivers, and advocates. Two major lawsuits in the early 1970s, PARC v Commonwealth of Pennsylvania and Halderman v Pennhurst, set the stage for the nation-wide deinstitutionalization movement. This book describes those legal wranglings and their implications for public policy both in Pennsylvania and the nation at large. It is also a story about what the editors call “the lived experience…of Pennhurst [which] haunts American history” (9). The book’s editors are also very good at explaining the changing verbiage used, over time, to label those individuals currently termed intellectually disabled, and the implications of those labels. Finally, the book is an account of the legacy of Pennhurst as a space: should this place be preserved or torn down, and if it is to be preserved, how will that happen and what story should that preserved space tell.Pennhurst is divided into three parts—a historical analysis of the rise and fall of the institution itself, an examination of the advocacy and litigation that led to the process of the deinstitutionalization of Pennhurst, and a discussion of what the space that was Pennhurst is today and what it might be in the future. Among the many strengths of the book is the extensive variety of authors who provided the various book chapters. They include not only the obligatory academics, but also lawyers, parents, disability rights advocates, documentary filmmakers, and news reporters. This wide range of contributors gives the book a series of differing perspectives on Pennhurst, but all agree that “the Pennhurst experience spoke to history and the present moment, and to the possibilities of a better and more compassionate future” (231). Although some entries are better written than others (a problem associated with all edited volumes), the general tone of the book offers all readers, both academic ones and those from a more general public audience, an insight into Pennhurst’s place in the long struggle for disability rights.Several chapters stand out as especially important ones. A short but riveting one was written by Bill Baldini, a former Philadelphia television reporter who narrated and produced the 1968 documentary exposé about his visits to Pennhurst entitled Suffer the Little Children. In recounting the impact of his evening news story, Baldini recounted that “the response was absolutely incredible. To this day, Channel 10 never got a response like that, for anything it ever did” (82). Another chapter entitled The Rise of Self-Advocacy is especially good at examining the importance of mobilization of Pennhurst residents in the larger narrative. The stories of individuals institutionalized at Pennhurst who became advocates for inclusion, employment, and making choices for themselves are both enlightening and uplifting. Many of these individuals organized into a group called “Speaking for Ourselves,” founded in 1981. This association, still in existence today, was one of the first organizations in the nation to provide a forum for people with disabilities to advocate for themselves. The authors of this chapter conclude that “it would have been impossible to imagine…that former residents of Pennhurst would stand up, at first in local self-advocacy chapters and later at national conferences, and speak about the abuse and horrors of institutions” (147). Another key chapter is one written by co-editor James Conroy. It examines the Pennhurst Longitudinal Study, undertaken to examine the lives of Pennhurst residents after they left the facility. Conducted under the auspices of research associates at Temple University, the study followed the life paths of former patients and concluded that people with developmental disabilities “would be better off if they moved from institution to community” (171). This had enormous implications for public policy, as it used empirical evidence to validate the success of the deinstitutionalization movement.Particularly important to public historians is the final section entitled “A View to the Future.” In three chapters, the various authors describe what has happened to the buildings and grounds of Pennhurst since its closing in 1987. Upon closure, the facility was abandoned, as “the Commonwealth of Pennsylvania simply turned out the lights, locked the doors, and drove away, leaving the buildings to weather the ravages of time and the elements on their own” (180). As the buildings gradually deteriorated, waves of what chapter authors Heath Hofmeister and Chris Peecho Cadwalader call “urban explorers” ransacked the structures and took artifacts, plumbing fixtures, and even the copper covering from the Administration building cupola, destroyed WPA murals, and posted YouTube videos of their adventures. In the process, they promoted the idea of Pennhurst as a haunted site. Without an understanding of the importance of Pennhurst, the campus became the site of “unofficial ghost hunting and séances, among other activities of occult pursuit” (188).By 2010, Pennhurst had become the site of an annual Halloween fright house extravaganza. Organized by private business owners who purchased much of the Pennhurst property from the state, the fright enterprise has been a commercial success, although one that “has come at the expense of historical accuracy and the perpetuation of a false narrative that further stigmatizes the former residents” (217). Tying the Pennhurst story to other examples of similar re-uses of former institutions throughout the country, chapter author Emily Smith Beitiks labels this phenomenon as “The Final Indignity.” Calling the experience “a twisted incarnation of Disneyland” (218), she concludes that it will be difficult to accurately portray the important story of Pennhurst and its residents when the 2017 Halloween season attracted 40,000 visitors to the site, bringing in revenue of approximately $2 million dollars. In the process, however, the historic meaning and memory of this place and its importance to the disability rights movement has been lost.In a concluding chapter, book editors Downey and Conway address the legacy, both historical and physical, of Pennhurst State School and Hospital. They maintain that the historical importance of the Pennhurst story cannot be fully explained without the re-purposing of the site, or at least parts of it, into some sort of museum of remembrance. Along that end, advocacy groups have been working to purchase the superintendent’s mansion and “transform this venerable structure into an interpretive center dedicated to representing and educating about the institution’s place in American history” (226). Working in conjunction with Temple University’s Center for Public History, this is still an ongoing process, exacerbated by the COVID-19 pandemic, with no firm resolution yet. This chapter is a fitting ending to an important book. It speaks to the connections between disability history and public history and provides insight and context into a key place and moment in the movement for disability rights. The book deserves a wide audience.