Pennhurst and the Struggle for Disability Rights

by Dennis B Downey, James W Conroy, Dick Thornburgh (Foreword)

Conceived in the era of eugenics as a solution to what was termed the "problem of the feeble-minded," state-operated institutions subjected people with intellectual and developmental disabilities to a life of compulsory incarceration. One of nearly 300 such facilities in the United States, Pennhurst State School and Hospital was initially hailed as a "model institution" but was later revealed to be a nightmare, where medical experimentation and physical and psychological abuse were rampant. At its peak, more than 3,500 residents were confined at Pennhurst, supervised by a staff of fewer than 600.

Using a blended narrative of essays and first-person accounts, this history of Pennhurst examines the institution from its founding during an age of Progressive reform to its present-day exploitation as a controversial Halloween attraction. In doing so, it traces a decades-long battle to reform the abhorrent school and hospital and reveals its role as a catalyst for the disability rights movement. Beginning in the 1950s, parent-advocates, social workers, and attorneys joined forces to challenge the dehumanizing conditions at Pennhurst. Their groundbreaking advocacy, accelerated in 1968 by the explosive televised expos� Suffer the Little Children, laid the foundation for lawsuits that transformed American jurisprudence and ended mass institutionalization in the United States. As a result, Pennhurst became a symbolic force in the disability civil rights movement in America and around the world.

Extensively researched and featuring the stories of survivors, parents, and advocates, this compelling history will appeal both to those with connections to Pennhurst and to anyone interested in the history of institutionalization and the disability rights movement.

Genres: Disability, History, Nonfiction

280 pages, Hardcover

Published May 4, 2020

Reviews

[Renee · Rating 5 out of 5]

At first I didn’t think I would like this Pennhurst book as well. However the more I read the more I appreciated the raw honesty and details. The story was told as is without trying to make Pennhurst anything more positive than as is. I thought parts of the book was a bit redundant and could have been a bit more organized. I think books about the history of state institutions shed a little light for someone who knows little about the topic such as myself and what needs to be done to greatly improve the system. My heart went out to the many inmates who struggled with such poor living conditions. I was sorry to read that there were people who didn’t believe it was ethically necessary to receive permission from the family before performing vaccine tests on inmates and some of the inmates even died. I liked how the book mentioned Roland who was a strong self advocate leader who had lived in Pennhurst himself. I thought his story was moving. I liked the bibliography, pictures, and the description of what happened to the building after the state school had closed. I was sad to read that it was used as a haunted asylum and the site was receiving much money for the effort. I don’t agree that any facility such as Pennhurst should be used as a Halloween attraction. I was pleased that eventually the attraction was closed. I was pleased to find that there was a self advocate group started by many of the inmates who fought to have a happier quality of life. I was happy that there were government officials who were willing to listen and to make changes to better the lifestyle of people with intellectual disabilities.

[James J. Johnson · Rating 5 out of 5]

The stories ranged horrifying to triumphant. The people who poured into this book have given a gift.