My brother, Michael is autistic, very low functioning and has never spoken. He is about 3 years older than me. I am 4 years older than my younger brother. Our family lived together until Mike was 13 years old. From the time Mike was born, he never progressed. He couldn’t take care of himself and it was becoming a very difficult for Mom. She looked everywhere trying to find a place where he could be taken care of. One of our distant relatives told my parents about Willowbrook State School, a large mental institution on Staten Island in New York State. That’s where they brought Michael to live.
Visits
I never actually went far inside the ward area when we went to see Mike at Willowbrook. There was something ominous about it. The red brick buildings were multi-storied structures with numbers mounted in circular plaques at the top of the steps, just out of reach. They reminded me of a movie: Stalag 17. Mike’s building may even have been number 17.
I would sometimes hear what sounded like shouts or howls. They rose out of the unknown parts of the building and echoed through the cavernous halls. I used to wait in the nurse’s office with Dad when the staff went to get Mike. The smell that assaulted my nose was peculiar. Not a hospital smell, but more like a mixture of antiseptic and fecal matter.
What was going on?
I never knew that in 1965, Robert F. Kennedy said that Willowbrook was a snake pit. At least I don’t remember knowing. Mom and Dad used to get calls that Mike fell down, got his teeth knocked out, or sustained other assorted bruises and cuts. The staff always blamed the incidents on other patients. Mom never believed this. My parents probably had a good idea that the place was a snake pit. What could they do.
In 1972, Geraldo Rivera exposed the corruption and abusive treatment patients were receiving. Maybe that is why I never got to go past the nurse’s station. Abuse must have been happening just beyond what I could see. Or maybe the let up on visiting days.
Break up
A court decision mandated the break up of Willowbrook. From 1975 to 1987, the 6,000 patients were relocated to developmental centers and group homes. Mike went from the Brooklyn Developmental Center to one of the group homes. As I’ve mentioned in other posts, I have been witness to Mike’s treatment in this environment. I was consulted about his treatment and asked to participate in his care.
In my experience, there is no comparison between the care provided in a group home setting versus care delivered by a big institution. Large mental institutions are warehouses for human beings who can’t care for themselves. We should never allow them to come back.
that sounds awful.
Yes, it wasn’t pleasant.
Yes, big institutions are terrible at caring for the helpless, for the most part.
when society is struggling an institution will mirror the society it is in. I would like to think we have moved on, but sadly there is still a lot of work to do.
Institutions are set up by the societies in which they operate. This is why awareness is so important.
Six thousand patients! That’s what really jumped out at me. I can hardly imagine that number of people being kept in one location, let alone vulnerable people who need extra care. It must have been so awful for your parents, and I’m just so glad the group home worked out afterwards. Its good they involved you in his care.
It was indeed very bad. Not to mention the one ward where they did unethical medical experiments.
Your family must have gone through some awful moments when you heard about that. I hope your brother seems not troubled by it now.
Nothing seems to trouble Mike. He seems to be pretty much unaware of things. The transparency of his care is much better now.
We can’t kid ourselves, Michael. There is still abuse. It happens In group homes, in nursing homes, in our own homes, in any place where there is care for people who cannot speak for themselves. Some things I know first-hand because of my involvement in the disability community, some things I’ve learned through others, through people in our group, through the books they’ve written, through books and articles I’ve read. I’m sure you know this. Willowbrook may well have been the worst of the worst, but it was and is not the only place of hell for the disabled. It’s too painful, too difficult to think about, so we push it from our minds.
I don’t discount the legions of people who work for $10.00 an hour (or less) caring for, and even loving, the fragile folks for whom they are responsible. It is hard work, often unrewarding. And there are good places too. Good administrators, people with hearts . . . and souls.
But I’ve seen too much, heard too much, to think that all is rosy.
One day I was visiting a friend whose son is developmentally disabled and lived at home. We were standing on her second floor balcony when the van arrived from his adult day program. Out stepped the aide, someone we knew well and respected, someone who seemed to genuinely care for the people in the day program.
My friend’s son followed her out of the van and accidently stepped on her foot. “Watch out, you stupid dumb retard!” she shouted. She didn’t know we were on the balcony.
Was that abuse? Did we report her to her supervisor? Did my friend continue to send her son to that day program?
You may think these questions are easily answered . . . for many reasons, they are not.
I understand what you’re saying, Anne. (This is Jack, by the way.) Abuse doesn’t go away just by reducing the size of the patient load for which staff is responsible. There are people who should not be in positions to care for others. However, I still believe that large institutions have a much, much greater potential for abuse than a smaller venue.
I also believe that if a patient has an advocate, he or she is much more likely to receive better care.
I’m curious about something. Since your parents suspected that Willowbrook was indeed a snake pit and that your brother was being abused by staff members, why didn’t they take him back home? I realize there were no services back then and parents were encouraged to place their disabled children in institutions but wouldn’t a parent change their mind if the institution was abusive and neglectful? Or did your parents relinquish all parental rights to Mike and couldn’t, even if they wanted to, take him back home again? I’m not trying to place blame, I’m just trying to understand.
Thank you for your comment, Maureen. It is complicated. My parents placed Mike at Willowbrook in the early 1960s. Willowbrook was the last of many places that my parents looked into. At that time all large institutions were the rule rather than the exception, as it is today. That large institutions participated in the neglect of their charges came to public awareness in the early 1970s, at which time NY State made some major changes.
In terms of my parents’ decision to place Mike at Willowbrook, I can’t pretend to know the scope of their heartbreaking decision to place my brother outside the home. Mike was not manageable by my mother, who was the only caretaker during the day, as my father worked. My younger brother and I also needed attention from our parents. Mike became a ward of the state, but I am sure they would have been delighted for my parents to take him back.
I can say for certain that it was a decision my parents did not take lightly. They would not/could not take Mike home for the sake of their other two children. It was one of those decisions that no one should have to make.
Thank you again for your interest.
Jack
Thanks for your insight. I asked this question because I’m trying to understand what my parents did in 1958. I wanted to see your response without you knowing about my personal connection to Willowbrook. Not that I thought you’d be dishonest but I didn’t want you to give me a “fluffy” answer just to make me feel better instead of cold facts. You see I had a brother that died as a result of abuse he suffered at Willowbrook. Here’s a link to his virtual grave: http://findagrave.com/cgi-bin/fg.cgi?page=gr&GSmid=46599666&GRid=8272491&. Kevin died a year before I was born. My sister told me about him in 1990. Anyway, I waffle between understanding and anger at my parents (both now deceased). If you don’t mind, I’d like to ask you some more questions. I’ll start with this one for now. I obtained a copy of Kevin’s death certificate in 2004 (it’s in the photo section on findagrave). It states that he was transferred to the Bronx State Hospital two months prior to his death and that’s where he died. I thought there was an infirmary on the grounds at Willowbrook. Do you have any thoughts as to why my brother was transferred? Could this have been the typical procedure if a child’s injuries/illness were known to be terminal?
I’ll tell you the rest of what I know about Kevin and how things played out but I’ll save that for another time. It’s a long story. Your family was lucky that your brother didn’t meet the same fate as mine.
So sorry to hear that, Maureen. There were a number of wards at Willowbrook, but I don’t think that any were equipped for hospital-type care or injuries for that matter. The state system probably had institutions with different levels of care. If he was transferred in the mid 1970s, it might have been part of Willowbrook’s breakup. My brother was transferred to Brooklyn Developmental Center at about that time.
I hate to tell you this, but there was a ward at Willowbrook where patients were deliberately given hepatitis in order to test a medical treatment. Look it up on google (i.e., hepatitis willowbrook). A shameful episode.
Thank you for the link. I will take a look.
best,
Jack
My brother was born in 1953, placed in Willowbrook in 1958, and died in 1964 so his death was prior to Geraldo’s expose and the deinstitutionalization movement. I know about the hepatitis “studies” and have no doubt Kevin was one of the test cases. The timing, unfortunately, lines up with Kevin’s admission and incarceration dates. I’ve tried to get Kevin’s records a few times in the past decade but always hit a brick wall. I’m going to look into what’s involved to become his legal representative. It seems that’s the only way I can get Kevin’s records (if any still even exist).
I can’t comment too much about the hepatitis “studies”. It infuriates me. All I can say is those doctors better hope God has mercy on their souls. To purposely give hepatitis to defenseless children is one of the most rotten things I’ve ever heard about in my life. And to think they actually lied to parents and told them it would benefit their child?!! Evil people. Did Willowbrook try to (sneakily) get parental permission to give hepatitis to Mike?
I read the studies. There has been a lot written on the despicable ‘consent’ which parents had to sign. If your brother was in that ward, there should be some kind of record. My brother was not on that ward, thankfully.
It sounds like they targeted children in a specific ward for their ‘studies’. I never saw how Willowbrook was organized back in the day. I’m thinking the population was housed by sex, age, and severity of disability. Were they going after a certain group of children to infect? As lousy as it is to think about, they probably found it easier to infect nonverbal and low-functioning children like your brother (I think my brother had autism too). Or perhaps your brother was spared because he was older? Maybe they wanted the really little kids only? Even though I know it won’t be good, I hope to someday find out the entire truth about what happened to my brother.
The patients had to be admitted to that specific ward. The rest of willowbrook was overbooked and there was a waiting list to get in except if the parents agreed to admitting their child to that ward. The researchers argued that 100% of patients get hepatitis anyway so it wouldn’t matter if they were deliberately infected.
Yes, I read about that. I also came across the letter that was sent to parents dated November 15, 1958. Informed consent apparently didn’t exist back then! What’s unclear to me is the timeframe. Some articles I read stated that the studies went on from the late 50s through the early 70s, others put the timeframe as 1963 through 1966, and on the Wikipedia page for Saul Krugman it gives 1958 to 1964 as the injection and tainted milkshake years. .
It’s all awful but the part about tainted milkshakes really got to me. When I was a kid, there was a small shop around the corner from my house that sold newspapers, candy, cards, and had a counter where you could get a sandwich, soda, or a milkshake, etc. I loved vanilla milkshakes (still do!) and it was a real treat when my mother would buy one for me. So the thought of those innocent children at Willowbrook being given tainted milkshakes sickens me. No doubt they thought they were getting a special treat and probably happily drank them down to the last drop.
very awful…