Thursday, March 5, 2009

Willowbrook - A Sad History Lesson

I was a history major in my undergraduate education. I am always drawn to history and the stories of people at certain points in time. Now that I have Quinn in my life my history lessons have taken an interesting twist. I have started to study how our country has treated those with cognitive disabilities. I ordered an interesting documentary from Amazon (Unforgotten: Twenty-Five Years After Willowbrook) and I am admitting to the rest of the class that I have not fully watched it. But I have watched the special features which included a 1972 investigative report by Geraldo Rivera and did some research on the internet. I can't wait to learn more after watching the full documentary, but I have decided to share what I have learned thus far in order to make my history professor Dr. Cedar proud (always the A student I am).

Willowbrook State School was opened in 1947. It was a state-supported institution for children with cognitive disabilities. It was located in Staten Island, New York.

In the 1960s there were unethical medical studies conducted at Willowbrook on the population of patients there. Between 1963-1966 medical researcher Saul Krugman intentionally infected children placed at Willowbrook, either orally or by injection, with hepatitis in order to study what would be the most effective treatment. Yes, you read that right, he intentionally made these children who were cognitively disabled sick. Fellow history majors or history lovers, here is an alert - doesn't this sound somewhat similar to the Tuskegee Syphilis Study from 1932 to 1972, although in that situation African American males with syphilis were not treated when they could have been just because the researchers wanted to study the impact race had in the progression of the disease. In both of these situations we unfortunately learn that some researchers and others in society did not place much worth upon anyone of diversity, whether it be due to race or cognitive disability.

In the 1970s Geraldo Rivera (who at that time, pre-Al Capone's vault - remember that?, was an investigative reporter in New York) conducted a series of investigations at Willowbrook. This is what I watched on the special features of my dvd. Very very sad and difficult to watch. But I had to watch it. I can't help it. I need to see these things and know about them. The investigative report makes the institution where Molly Daly (from Where's Molly - discussed in a previous post) was placed look very mild. At Willowbrook, there were deplorable conditions such as children running around with no clothing, lying in their own feces for hours and hours, having no stimulation, overcrowding, and abuse. I never knew this about Geraldo that he did this wonderful thing of bringing this story to the public. Why didn't I know this about Geraldo? I kind of feel like I misjudged him all these years. After Geraldo's report, changes slowly followed. You know how bureaucracy is. There was a class-action lawsuit. The publicity of Willowbrook also contributed to the passing of the Civil Rights of Institutionalized Persons Act of 1980. Willowbrook ultimately closed in 1987. Now a college campus stands on a place that once was a state-sanctioned place for mistreatment of those with cognitive disabilities. I wonder if those college students really know what once went on where they walk and learn? I wonder if they are taught about awareness and advocacy for those with disabilities? Maybe...because there is the Institute for Basic Research in Developmental Disorders there by the campus. Maybe there is some regret for past wrongdoings.

And the biggest thing I wonder is why didn't I know this before? Does your average person know about Willowbrook and it's history? Have they seen Geraldo Rivera's report? No offense Dr. Cedar, but had I known about this maybe I could have studied this for my independent study senior year. Here I was born in 1971. While I was safe and sound - fully clothed and loved - in my home growing up, people were suffering at Willowbrook. People (who were very similar to my now daughter) were laying naked curled up in a ball with no care from staff for hours and hours and hours. They had to eat a full meal shoved in their face in five minutes or less because that is all the time that the staff had for them. And forget about teaching self-help or doing early intervention. And while I was growing up I was completely clueless about all this happening right here in my own country. Nothing like having a child with a disability to really kick start your education.


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