Pennhurst and the Struggle for Disability Rights

Abstract

Today many people know Pennhurst State School and Hospital as a popular tourist site. But Pennhurst and the Struggle for Disability Rights, a new collection of essays edited by James W. Conroy, copresident of the Pennhurst Memorial and Preservation Alliance (PMPA), and historian Dennis B. Downey, sheds new light on its compelling history. By its closure in 1987, Pennhurst represented what Conroy and Downey call “the epitome of what was wrong in failed public policy in the treatment of individuals with mental disabilities” (5). The editors and contributors to this collection—most of whom have direct links to Pennhurst—use legal records, government archives, media publications, institutional records, and personal accounts to paint a compelling and thorough picture of the institution and its relationship to the evolution of public policy and the disability rights movement in twentieth-century America. Although Pennhurst was previously little known to scholars outside disability studies, the authors of this volume make a strong case for its importance to the disability rights movement, its centrality in the larger histories of disability and public policy, and its potential for future scholarship across a wide range of fields.Located in Spring City, Pennsylvania, Pennhurst held over 10,600 intellectually disabled residents of all ages, races, and genders from its founding in 1908 until its closure in 1987. Run by the Commonwealth of Pennsylvania, it joined a growing network of American facilities spawned by the public policy shift toward institutionalization at the height of the Progressive Era and the eugenics movement. In all, nearly 300 institutions—almost sixty in Pennsylvania alone by 1923—incarcerated almost half a million people with disabilities. Although Pennhurst was long seen as a successful model for other facilities, disability rights advocates shattered this image in the 1960s by exposing its nightmarish conditions and bringing landmark civil rights lawsuits against the institution. Pennhurst residents endured severe overcrowding, abuse, and neglect while staff exploited them for medical experimentation and forced labor. Pennsylvania attempted to reform the facility before closing it in 1987. Since then, organizations like the PMPA have shaped the institution’s legacy as an “epicenter of an emerging disability rights campaign that continues to this day” (7). The contributors to Pennhurst and the Struggle for Disability Rights argue “that there is more to Pennhurst than Pennhurst” by analyzing its role in larger shifts in public policy—most notably the transition from institutionalization to deinstitutionalization—and the growth of the disability rights movement (xv).Part 1, “Pennhurst in Time and Place,” explores the trajectory of Pennhurst within the larger rise of institutionalization in public policy from the Progressive Era through the 1970s. The contributors to part 1 use Pennhurst as a case study to demonstrate how institutionalization created a culture of secrecy that directly enabled the abusive conditions in many facilities. Downey begins the section by tracing the combination of political power, eugenics, and social and scientific thought that affected institutionalization. J. Gregory Pirmann—the former director of Planning, Evaluation, and Development at Pennhurst—illuminates the haunting memory of residents’ lived experiences and what he describes as the “utter lack of freedom and the continuous disregard for even a modicum of human dignity” that defined their treatment (56). Finally, Conroy and Downey analyze what they call a “veil of secrecy” that separated institutionalized people from their families and robbed them of their civil rights, making them vulnerable to physical and psychological violence and exploitative medical experimentation (59).The collection’s second section, “The Power of Advocacy,” features a mix of essays and personal accounts of the disability rights movement. They describe not only how activists brought attention to the dehumanizing conditions at Pennhurst through a series of media exposés and lawsuits in the 1960s-1970s, but also the larger shift toward self-advocacy and deinstitutionalization in activism and public policy. Halderman v. Pennhurst counsel Judith Gran details the civil rights arguments that advocates made in court in the 1960s–1980s and the effects of their legal victories, while PMPA leaders Janet Albert-Herman and Elizabeth Coppola describe how parents and volunteers organized to fight for disability rights starting in the 1950s. Conroy recalls his work with the Pennhurst Longitudinal Study, which tracked every resident at Pennhurst in 1978 for five years and documented how they benefited from moving from Pennhurst to community living. Notably, the study included interviews with former residents, in contrast to prior researchers who had shown a lack of interest in patients’ perspectives. These essays are complemented by the “personal remembrance” of two self-advocacy activists—Mark Friedman and Nancy K. Nowell—as well as an oral history by Bill Baldini, the journalist who produced the groundbreaking television series Suffer the Little Children (1968) to expose the abuses at Pennhurst (124).The last section, “A View to the Future,” examines historical memory and the contested fate of the Pennhurst campus, which has fallen into disrepair. The essays in this section focus on the physical site and, as filmmaker Heath Hofmeister and PMPA cofounder Chris Peecho Cadwalader put it, how “commercial interests coexist with the desire for efforts at dignified remembrance of what happened at Pennhurst and places like it” (180). The decaying campus has become a popular Halloween haunted house and attracts destructive “urban explorers” (182). However, as essays by PMPA cofounder Nathaniel Guest and disability scholar Emily Smith Beitiks relate, activists have pushed back against the campus’s deterioration and commercialization to save the physical site and revitalize historical memory of the institution. The contributors to this section articulate the harm of using Pennhurst as a haunted house that portrays people with disabilities as monsters, and envision an alternative path, wherein Pennhurst is preserved to represent the experiences of its former residents and its legacy.Together, these three sections present a comprehensive look at Pennhurst and its relationships with public policy and the disability rights movement. They cover its founding and internal history, the activism that led to its closure, and its contested future and historical memory. Throughout, the contributors demonstrate Pennhurst’s role as a “cradle of liberation” and manifestation of the disability rights movement’s ongoing fight (182). This collection could have been further strengthened with greater attention to gender, race, and class, and a more thorough treatment of staff members at the institution. But it excels in its rich detail about residents’ and advocates’ experiences. Their personal accounts stand out, and they are particularly meaningful in light of how Pennhurst and similar facilities ignored and suppressed residents’ voices. Overall, the contributors’ variety of perspectives and deep commitment to Pennhurst’s history and disability rights make Pennhurst and the Struggle for Disability Rights a valuable contribution to the growing bodies of scholarship on disability, eugenics, institutionalization, medical ethics, and beyond.