PHILADELPHIA (KYW Newsradio) — Just an hour outside of Philadelphia in Spring City, Pennsylvania, sits what remains of Pennhurst State School and Hospital – an institution that’s now known for its horrific abuses of people with disabilities.
Although, it may be better known for something else these days: the Pennhurst Asylum haunted Halloween attraction.
There has been heated debate over the haunted asylum since it opened in 2010, because the history of those buildings is both tragic and deeply influential in the ways society treats people living with disabilities today.
Pennhurst State School and Hospital opened in 1908 at a time when there weren’t other options for people with intellectual and developmental disabilities to receive care. Many children were sent to live the rest of their lives there. They were separated from society and referred to as “inmates.”
From the start, Pennhurst was severely overcrowded, underfunded and understaffed with little to no oversight from anyone outside the institution.
“It gave license to the worst features of human nature in terms of treatment and care,” says Dr. Dennis Downey, emeritus professor of history at Millersville University and co-editor of the book “Pennhurst and the Struggle for Disability Rights.”
“While there were good people who worked there, there was also enormous abuse and institutional violence, and psychological, physical and sexual harm that was done.”
In 1968, reporter Bill Baldini broadcast the conditions at Pennhurst in a five-part documentary series on NBC10 in Philadelphia, sparking disability advocates and families of Pennhurst residents to take action. Several court cases confirmed the constitutional rights of disabled people to education, care and protection, and ultimately closed Pennhurst in 1987.
“Pennhurst really was ground zero in the recovery of rights that had been lost,” Downey said.
Out of the closing of Pennhurst and other institutions came a blossoming disability rights movement. Group homes were developed where people with disabilities could live and be active in the community. Others chose to live with their family or another family that was willing and able to take them in.
There’s a lot of evidence now showing that people with disabilities do better and live longer when they are able to interact with society, according to Dr. Allison Carey, chair of the department of Sociology and Anthropology at Shippensburg University, whose research has focused on people with disabilities and their families.
“What treatment is supposed to do is enable you to be a part of the community, to take on valued roles,” she says. “Being in an institution just fundamentally can't do that. You can't teach people how to be a part of the community by completely pulling them out of the community.”
Debbie Robinson runs a self-advocacy group in the Philadelphia area called Speaking for Ourselves. She grew up in the 1960s and has seen how people with disabilities – like herself – have gained more freedom over the years.
“This is about choice,” she said. “Making your own decisions…being in charge of your own life.”
Speaking for Ourselves holds trainings to teach people with disabilities how to know what they need and how to ask for it. They’ve held demonstrations to advocate for disability rights, like a freedom march that became a national day of action, and also offer resources and advice for parents raising kids with disabilities.
There are still a lot of barriers facing people with disabilities like long waiting lists for resources, segregated education and a lack of job opportunities, among other things.
“I think it's really important to see the progress, and to say that there are still many, many challenges,” Carey said.
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For those who want to help, both Carey and Robinson emphasize the importance of working alongside people with disabilities, asking them how they want to live and involving them in any laws or decisions that will affect them.
“You can't do anything without us being at the table,” Robinson says. “That's the key.”
You can hear more about Pennhurst, how it became a haunted house, and the efforts to preserve its history on The Jawncast. Listen in the player below or wherever you get your podcasts.