history of Intellectual and Developmental Disabilities (IDD) (part 2)

I’m Aurora Kripa, the Chief Operating Officer and your guest blogger for September.

Welcome to the second part of our series on the history of Intellectual and Developmental Disabilities (IDD). In this blog series, we will look at significant milestones, transformative legislation, and influential figures who have shaped the landscape of IDD in the United States and worldwide. This blog series includes historical terminology and language no longer used at KenCrest. These references should be understood within their respective historical context.

Last week was DSP week, and I would like to say Happy DSP Week to our DSPs. I had the opportunity to go to two events last week, and it was great seeing so many of you. I especially enjoyed the music and the dancing. I also really enjoyed reading your comments after the first blog, so please keep those coming. Let us know what you think of this series and what else you’d like to read about in future blogs.

Last week, we discussed training schools and their transition to asylums. Throughout time, there have been people who wanted to “fix” people with disabilities. I saw a quote that said people with disabilities do not need to be fixed; they need to be accepted for who they are. I also think the word embraced should be added to this quote. We must accept, embrace, and recognize that our role is to assist people in the ways they want and need rather than how we think they should be helped.

Growth of Institutions

Institutions began using inmates with mild disabilities as unpaid labor to help care for others. The new institutional leaders were medical doctors. On June 6, 1876, six superintendents gathered in Pennsylvania and established the Association of Medical Officers of American Institutions for Idiotic and Feeble-Minded Persons (now known as the American Association on Intellectual and Developmental Disabilities or AAIDD). Institutions became medically oriented, and persons with disabilities were viewed as patients who were sick and needed to be cured.

Institutions began to expand by buying inexpensive land and abandoned farms in rural areas. The number of people in public institutions continued to rise, averaging approximately 250 persons per institution in 1890 and over 500 per institution by 1905. In a relatively short time, practices regarding persons with disabilities had moved from compassionate education to segregation. In 1900, there were about 10 private institutions, and by 1923, that number increased to 80.

One institution many of you know about is Pennhurst.  Pennhurst opened in Spring City in 1908, and in addition to housing people with disabilities, it housed immigrants, criminals, and orphans who had nowhere else to go, and it became overcrowded within only a few years.  It essentially became the solution for ridding society of all “undesirables.” Over the years, the property grew to 1,400 acres with its own power plant. Pennhurst became a self-sufficient village with farming, gardening, a bakery, laundry facilities, and industrial trades and domestic workers.  It even had its own cemetery. Pennhurst only got worse as years went by, and I encourage you to watch Bill Baldini’s five-part exposé on Pennhurst called Suffer the Little Children.

We have individuals at KenCrest who once lived at Pennhurst, and our CEO, Marian Baldini, was involved in helping people transition out of Pennhurst into group homes (she wasn’t at KenCrest then). I mention this because people tend to think of the past as something that happened a very long time ago, but these things have happened during our lifetime. I think others at KenCrest were involved in transitioning people out of Pennhurst, and I’d love to hear from you, so please reach out.

The late 19th and first quarter of the 20th century saw the rise of the Eugenics Movement, which was defined as the science of the improvement of the human race by better breeding.” Supporters of eugenics advocated for sterilization of persons with disabilities as a form of social control. They believed that if people with disabilities reproduced, they would eventually ruin the human species., and so vasectomies were performed on men and tubal ligations on women.

In 1927, Buck v. Bell, a sterilization case concerning a woman who was labeled as “feebleminded,” reached the United States Supreme Court. A family tree which later turned out to have been made up showed that the girl was the third generation of people with limited intelligence. The Chief Justice, Oliver Wendell Holmes, ” declared that three generations of imbeciles are enough!” and he approved the sterilization procedure. Later studies proved that the woman was not feebleminded.

As knowledge and understanding of the causes of disabilities increased, the eugenics movement began to lose its scientific backing, but not before it resulted in tens of thousands of forced sterilizations.

Around 1920-1930, some special education classes began to be offered in large cities, but many families continued to send their children to institutions because they believed that only there would they receive training. Lack of community services and negative attitudes about persons with disabilities also contributed to the rise of institutional placement.

In my next blog, I will talk about the parent movement that began around 1950-1980 and where we are today.