That’s not original to me. I heard it somewhere. Mostly, it has to do with challenging the idea that people with intellectual disabilities are somewhat less than the rest of us. In the past, many of them were stuck in large institutions, where they were warehoused, rather than educated. But it gets worse than that. The people in the institutions, many of whom had been there since they were babies, were also subjected to terrible abuse and were traumatized in ways that I can’t even imagine. Those facilities were closed, but it took a shocking expose in the form of a television documentary in 1972 for that to happen. Geraldo Rivera was the journalist who exposed the horrific abuses at the Willowbrook State School, in Staten Island, New York, which had been called a “snakepit” by Robert Kennedy in 1965. Watching the 1972 expose for many people was their first exposure to this horrifying situation. It was not, however, the first time that Willowbrook was the subject of investigative journalism.
After watching the documentary, which I found online, and after listening to a documentary made fifty years later by PBS, and after reading a bunch of articles online, this is what I learned:
“It smelled of filth, it smelled of disease, and it smelled of death,” said Geraldo Rivera, of a facility that, at the time, had 5,300 patients, ranging in age from babies to adults. The children received no education and very little attention. They were left to stare at the floor and wander, often naked in their wards. No one talked to them or gave them attention, much less love and kindness.
Geraldo Rivera interviewed a resident named Bernard Carabello, who has cerebral palsy and who was misdiagnosed with an intellectual disability. He was placed in Willowbrook as a three year old child and remained there for eighteen years. He described the situation as a “disgrace,” and he said that he wanted to get an education but that he was too old. Later, he became an advocate for people with developmental disabilities, speaking on behalf of those who struggled to find words with the power of his own experiences. He has received many awards and accolades for his work, including an honorary doctorate frome the City University of New York Staten Island. He is now retired, but he continues to speak out on behalf of equal rights for people with disabilities.
The situation in Willowbrook in the early 1970s was made worse by budget cuts, which resulted in many attendants being laid off. Those who were left struggled to care for their charges, but were unable to keep up. Their jobs had become impossible. Some of the residents were unable to feed themselves. They received no training in self care. Without any training, they could not learn new skills. But their needs were not met, due to this staffing shortage. I guess you could call it a perfect storm. The kids were fed so fast because there wasn’t enough time to feed each one properly/ As a result, they risked death by aspirational pneumonia.
Geraldo Rivera called the treatment of the residents of such institutions as Willowbrook as the “last great disgrace… the attendants are as much the victims of the conditions here as the patients… the story of Willowbrook and of Letchworth Village (another institution in New York state) is the story of degradation, a real-life horror story of lack of attention, of filth, and of children living as animals live in an uncivilized and inhuman existence.”
Geraldo Rivera was not the first journalist to observe the abuses of Willowbrook. His reporting was nationwide so it gained the most attention. But previously, in 1971, a newspaper reporter named Jane Kurtin had written a series of articles titled “Inside the Cages,” about that very same topic for the Staten Island Advance. The photographer was Eric Aerts. These articles and photographs revealed a great deal about the horrific conditions at Willowbrook. And the abuses they revealed were very shocking.
Willowbrook, which had been opened in 1947, closed in 1987. The nightmare continued for forty horrifying years, and, for some, the experience was fatal. Years later, according to articles I read online, families were still looking for the graves of their loved ones. And not all have been found.
Many of the families of the residents, both those who passed away and the survivors, were traumatized when they learned about the horrors that their family members had endured.
One of the worst thing that happened was that Willowbrook residents were intentionally infected with hepatitis to track the development of viral infection, as well as to test the effectiveness of the gamma globulin injections as protection against hepatitis. All of them were infected ON PURPOSE. Were their families informed? Most of the residents were severely disabled and had no education. Many were children. They could not give informed consent. These cruel experiments started in 1956 and continued for fourteen horrific years.
People with intellectual disabilities deserve far better than this. They deserve a quality education, a safe and nonrestrictive environment, and an opportunity to be the best that they can possibly be. They deserve to have a head start on their education with early intervention programs. People with intellectual disabilities learn more slowly than the rest of us, but is learning a contest? In learning, we can all reach the finish line at different times. And we can all be winners. Education is a personal challenge, not a road race.
And, above all, people with intellectual disabilities and other developmental disabilities have the right to be treated with respect. People with intellectual disabilities, including those who have very severe disabilities, are human beings. They have voices. It may take them longer to say what they need to say, but it is up to everyone to listen. That means stop the name calling, including the “R” word. No one wants to be called “retarded.” People with intellectual disabilities have said that they don’t like that word being applied to them. Repeating it over and over again is very unkind. So don’t say it. Labels are for jars, not people.
It is my sincere hope that the types of abuses that happened at Willowbrook never happen again.
Thanks Alice for the distinction between developmental and intellectual disabilities.
One does not imply the other.
Certainly labels are not for people. Like a line in the sand, once it has been made the problem arises of what side of the line you are on. Without the line, the problem does not exist.
Thank you for your insight, Doug. It is very much appreciated.
I’ve read a bit about Willowbrook, though not much. I think there are a few historical fiction books on this topic. The things people do! 🙁
The things that people do can be shocking, especially when they are going after people they think are weak and unlikely to defend themselves. In the past, tens of thousands of people deemed to be feeble minded were sterilized against their will. In a future blog post, I will share the story of Carrie Buck, who was determined to be feeble minded because she got pregnant as a teenager. The pregnancy was the result of incest. She was the first person to be sterilized under Virginia’s eugenics law, and her case went to the Supreme Court.
This makes my stomach churn. How can humans be so inhumane?
People can be truly awful because we are taught to categorize people, to put them into slots, and to determine which slots have value and which don’t. And once you decide someone belongs to a slot that has no value, it becomes easier to abuse and neglect that person. And people with developmental disabilities, especially people with intellectual disabilities, are considered to be stupid and incompetent and incapable of learning. They are seen as helpless victims and exactly the type of humans that bullies like to target. This is, unfortunately, a sad reality. The only thing that could change this attitude, in my opinion, is education.
Thanks for the story, Alice. There are too many of them. I wonder how often the families visit or if they were allow to visit. And what did they see. I also wonder in our present times, with everything that is happening with budget cuts and staff shortages, how are the nursing homes?
I wondered about the visits, too. It seems that there must have been some limitations put on visits, just because of the health hazards of the buildings and the condition of the children. Unfortunately, many families were encouraged to leave the baby in the institution and not look back. They were told that the baby would never walk, talk, read or write, that the baby would be a vegetable. So, I honestly don’t know how many families were trying to maintain a tie with the child in the institution.
There were families that wouldn’t abandon their institutionalized children. Willie Mae Goodman was an active and involved parent who advocated for her daughter Margaret and for the rights of people with disabilities. At the age of 91, she is still involved in advocacy.
As for the nursing homes, the one that my mom was in was not great. It was just heartbreaking for us but we couldn’t take her home because of the severity of her Alzheimers.
Always liked that thought. I had not heard about Willowbrook before. I’ll have to seek out the documentary. @samanthabwriter from
Balancing Act
It’s a very sad story. A cautionary tale for us to be kinder to people we see as weaker than ourselves.
Thank you for sharing. My mother in laws brother is Mentally Challenged and its hard to see people treat him differently. Thank you for sharing about Willlowbrook because I hadn’t heard of it but will be sharing the post with my family.
Thank you so much, Glenda. i think that part of that different treatment comes from a lack of education. So I always want to spread the message and to remind people not to use the R word and also to remember that, no matter the challenge, people are still people and are worthy of respect.