The Horrors of Willowbrook State School

[Warning: Today's blog deals with a sensitive topic. It includes images that are hard to take in. Read at your discretion.]

In 1938, a state-supported institution for the mentally handicapped, known as the Willowbrook State School opened in Staten Island, NY. It was originally opened as a treatment center for disabled and injured World War II veterans but was quickly rebranded as a school for the mentally disabled.

Willowbrook State School (Courtesy of Opacity.us)

To cut to the chase: The lessons that were learned there were not academic.

The school was bringing in more students than it could afford to. By 1965, the school that had room for only 4,000 patients had well over 6,000 and was well understaffed.

Instead of spending more so that the hospital could efficiently run the day-to-day operations, budgets were cut. Less money was spent on food or clothes, which meant, that many "students" were left running around the institution; naked and malnourished.

Patients at the Willowbrook State School (Courtesy of fsdtrust.org)

And it gets much worse. Neglect was common. Children would be locked in their rooms for hours at a time.

If they had to go to the bathroom, they had to go on the floor. If that wasn't bad enough nobody was coming to clean the rooms or change their bed sheets, which meant that the patients had to sleep on the floor, in their own fecal matter.

Patients weren't even taught to keep themselves clean. As former patient Judy Moiseff told rootedinrights.org:

"Residents would rarely shower, and were rarely taught hygiene and grooming skills at all." 

Courtesy of disabilityjustice.org

Moiseff told rootedinrights, that when the patients did shower they'd have to do it together and would be given only five minutes. There were no towels or soap, there was no toothpaste and there was absolutely no assistance. Without being taught proper hygiene many couldn't keep it up.

As a result of the squalor these patients were living in, 30 to 50 percent of them ended up contracting hepatitis--a disease that effects the liver. Symptoms include jaundice, fatigue, abdominal pain, nausea, diarrhea.

To figure out why this was happening, Dr. Saul Krugman, from the New York University School of Medicine, conducted experiments on more than 700 patients!

Dr. Saul Krugman (Courtesy of hiddenhistoriesofmedicine.weebly.com)

One particular experiment consisted of injecting the patients with the actual disease either through a needle or through the feeding of infected stool samples. Yes, technically these experiments were legal--the researchers had gotten consent from the patients' parents--but remember, these children had been ABANDONED by their parents.

In the early 1970's, rumors started circulating that children were being abused at the Willowbrook State School. Frequent reports by local newspapers such as the Staten Island Advance as well as the Staten Island Register reported about patients being beaten and killed by strangulation.

Former patient, Bernard Carabello, said of his time there:

“I got beaten with sticks, belt buckles. I got my head kicked into the wall by staff … most of the kids sat in the day room naked, with no clothes on. There was a lot of sexual abuse going on from staff to residents, also.”

Another patient, David Clark, told SILive.com that as a result of the physical abuse he had endured his eyesight had deteriorated.

It wasn't until 1972 that the horrors of Willowbrook State School were completely exposed by an up-and-coming journalist, named Geraldo Rivera.

Geraldo Rivera circa 1972 (Courtesy of WABC)

At the time, Rivera was working as a broadcaster for WABC in New York. He was contacted by a doctor who had just recently been fired by the Willowbrook State School and was looking to expose their cruelties.

Rivera was provided with a key to one of the hospital's buildings and without warning, he brought a camera crew inside to document his findings. Of course, what he found was horrific. In the 28-minute news report that followed, he confirmed the audience worst fears.

“This is what it looked like, this is what it sounded like. But how can I tell you about the way it smelled? It smelled of filth, it smelled of disease, and it smelled of death.”

The news broadcast did raise national awareness of the situation that plagued Willowbrook and many other mental institutions of the time and lead to a class-action lawsuit being brought against the state of New York.

Reforms were brought upon the institution yet it was several years before many of them were enacted. By 1987, the hospital was shut down and the land was sold to the College of Staten Island.

In that time between Rivera's broadcast and the hospital's closure, many patients were liberated; physically and mentally. Many of the patients went on to lead successful lives.

Following his release from Willowbrook, Bernard Carabello went on to become a government worker for the city of New York. Some went on to work steady jobs and some started families. Others moved into assisted-living housing. More importantly.....the two hundred or so that were able to walk out of those hospital doors in 1987 continued to survive.

The irony of the situation is that all of the Willowbrook residents were institutionalized because nobody envisioned a future for them.

Their doctors and parents believed that the world would chew these kids up and spit them out and so, naturally, they thought that shielding them from society was the best option.

Yet they actually ended up enduring much worse circumstances and surviving. Sure, many patients died at Willowbrook. But more than 200 survived. More than 200 overcame the hand they'd been dealt.

To find out what these survivors have been up to in the past 30 years:

On Imagining People Complexly (A Reflection)

Welcome back to my little corner of the world! Hope you all have had a great two weeks and that you've taken the time to properly mourn the loss of the Artist Formerly Known as the Formerly Living Human Being Prince.....too soon? Oh well, on with your regularly scheduled reading.

I began writing this blog around four months ago now.

At the time, I didn't really know how long I'd be able to keep it up. Okay, I've been doing this for a class so I've had to keep it up but that doesn't mean that I thought I'd be able to. Yet I've found that I've actually been able to learn a lot about the disabled community and that throughout the years; I've actually learned things through my own experiences.

With this blog, I've wanted to raise awareness about what it's like to live with a disability. I could've shared all sorts of medical studies and facts about different disabilities but would you have really come away from my blog feeling enlightened?

What's more important to me and frankly, more interesting to me, about anyone that has a disability is how they live their life. As I've said in a roundabout way before: The person has the disability. The disability does NOT have the person. The disability is a part of who that person is. It is not ALL they are. Disabled individuals are just as complex as anyone else.

One of my favorite novels is Paper Towns by John Green.





















The novel follows a senior in high school named Quentin Jacobsen, who has been in love his whole life with the girl-next-door, Margo Roth Spiegelman. They were friends growing up but over the years, they drifted away while his feelings for her did not.

She falls in with the popular crowd and Quentin falls in with the band geeks. Margo frequently parties and pulls elaborate pranks with the "cool kids" and frequently runs away from home. Quentin, on the other hand, plays videogames and stays home on Friday nights to work on his latest honors English paper. Needless to say, Quentin thinks Margo has a more interesting life.

To make a long story short, Margo runs away from home for good and, at least in the beginning, Quentin thinks she's on some grand adventure like she always is. This time is different.

Margo leaves behind clues regarding her whereabouts for Quentin to find and once he does, he is quickly lead on a great adventure. An adventure that teaches him how much he has misjudged Margo.

 No, Quentin doesn't find out that Margo is a part of some terrorist organization that's going to take over the world. What he does find out is this: 

 "The fundamental mistake I had always made—and that she had, in fairness, always led me to make—was this: Margo was not a miracle. She was not an adventure. She was not a fine and precious thing. She was a girl.”

Why was this an important lesson for Quentin to learn and how does it tie into what I've been writing about the last few months? It's simple really. Everyone is, at the same time, more complex and less complex than we make them out to be. Everyone is human and no human is one-dimensional.

I touched on this idea a few weeks ago but it bears repeating. Everyone deserves the chance to have genuine life experiences regardless of their abilities or their limitations. Part of having a well-lived life is having people to share it with.

I stated in my first blog, that being able to foster genuine relationships with people can be difficult for someone like me because of the stigmas associated with having a disability.

Upon first meeting me, some people cannot seem to separate the wheelchair from who I am as a person. They have preconceived notions about my cognitive abilities. These notions lead them to treat me a certain way, child-like, usually. Sure, when I begin to speak, they bring it down a notch. Yet then, the condescension in their voices is usually replaced by surprise.

Surprise that I can talk or that I'm not institutionalized (which yes, was a sad reality for many people back in the '50s).

Throughout the years, this has really angered me and it has prevented me from being genuine with people, at least, until I'm absolutely comfortable with them.

If I feel like a person isn't automatically seeing me beyond the chair I am not likely to want to engage that person. The frustration and annoyance of talking to a person who I believe are internally judging me, based on false perceptions, is enough to deter me from many social situations. Which is a shame because then I don't get to know many different people.

Of course, it's not fair to put all of the blame on other people because if I want people to really know me, then I have to make the effort to present the most honest version of myself that I can. I cannot make snap judgments about a person. Especially, if I don't want them making snap judgments of me.

It's something that I think we ALL need to do better. We all need to try better to see each other for who we are and not based on lazy perceptions we have. These perceptions can be damaging and drive us further apart.