What Really Happened to the People at Pennhurst?

By James W. Conroy, Ph.D. May 2021

 

From 1908 to 1987, about 10,600 people lived at Pennhurst. We don’t know for sure how many people died there, but it was probably around half. Over the years, many people were discharged, ran away, or, toward the end, moved into small family-like community homes.

It was called the Eastern State Institution for the Feeble Minded and Epileptic when it opened in 1908, later the Pennhurst State School and Hospital, and finally just the Pennhurst Center.

It was designed and intended only for people with the disability now called developmental disabilities, or intellectual disabilities – and in the past we used terms like feeble-minded, idiot, imbecile, moron, and mentally retarded. Those terms are now out of date and offensive to our brothers and sisters who live with this kind of disability.

Its fundamental purpose was to get these people far away from society and never let them reproduce. The theory was that, eventually, they would be removed from the human gene pool.

By 1970, America had 293 places like Pennhurst, with nearly 200,000 Americans in them. Their conditions, in spite of the fervent efforts of caring workers, became horrible beyond description. It was the lack of funding, and the gross uncaring of society that wanted them "hidden away," that made it impossible for the workers to provide a decent humane abuse-free life.

(Pennhurst and places like it were never intended for our citizens with mental illness. Those citizens endured their own huge and abusive system called "state psychiatric hospitals." Their story is completely different from that of Pennhurst and developmental disabilities.)

Q: Were the People Better Off After Leaving Pennhurst?
A: Yes, in practically every way we knew how to measure.

  • How many wound up homeless?
    Zero.
  • How many wound up in jail?
    Zero.
  • Did they live longer than they would have?
    Yes, by at least 6 years.
  • Were they healthier?
    No, they were about the same, and got reasonable health care.
  • Did they become more independent?
    Yes, by at least 14% on a very accurate scale, shown below.

Self-Care Skills Growth, 1978-1986

  • Did their challenging behaviors decrease?
    Yes, by at least 3%.
  • Did they receive as much service to assist and learn?
    Yes, much more, by about 19%.
  • Were their homes better?
    Yes, much higher quality on three scientific measures.
  • Did families think they were better off?
    Yes, overwhelmingly. Look at this graph.

  • Did the people themselves say they were better off?
    Yes, overwhelmingly, those who could speak said Yes. In 14 years of interviews, only 6 reliably said they wished they could go back.
  • Did it cost more in the community?
    No, the opposite, Pennhurst folks had far better outcomes and quality of life in the community with 15% less taxpayer dollars.

Summary

Moving people from institution to community was one of the most successful social changes of the late 20th century.

The Pennhurst experience contributed powerfully to a great civil rights movement that very few people know about.

The terror and agony of the people who lived there was not in vain. It changed America and the entire world.