By Daisy Hampton, 11
July is Disability Pride Month in New York City, and July 26th is the 30th Anniversary of the Americans with Disabilities Act. New York City usually celebrates Disability Pride Month with a joyous parade from Madison Square Park to Union Square, but because of COVID-19, it was cancelled this year. While disappointing, we can still celebrate Disability Pride and the heroes of the Disability Advocacy movement. Bernard Carabello is a pioneer of the movement and a celebrated New Yorker for good reason.
Bernard Carabello was born in 1950 with cerebral palsy, but was misdiagnosed as being developmentally disabled. At the advice of doctors, in 1954 his mother placed him in Willowbrook State School, an institution for children and adults with developmental disabilities, where he remained for 18 years. Willowbrook was understaffed, overcrowded and underfunded, and its residents suffered abuse, disease and were otherwise treated inhumanely. In 1965, Senator Robert Kennedy paid an unannounced visit to Willowbrook and described it as a “snake pit.” In 1972, a physician there, Dr. Mike Wilkins, started raising awareness of the conditions at Willowbrook, and he was fired. He kept a key though, and brought journalists there, including Geraldo Rivera and newspaper reporters. Bernard was interviewed there and later he was snuck out for other interviews. The newspaper coverage and Rivera’s documentary caused public outrage. Parents of residents brought lawsuits and eventually the courts issued a judgement requiring improved conditions. Finally, in 1987, Willowbrook was closed. Bernard Carabello was released, with the help of Dr. Wilkins, when he was 21. When he was released, Bernard continued to fight for disability rights and founded the Self-Advocacy Association of New York State in 1986, where he worked until his retirement and still retains an office. I was lucky to interview Bernard and was inspired by his story.
Daisy Hampton: How old were you when you went to Willowbrook?
Bernard Carabello: I was three years old.
DH: Can you explain why you were placed there?
BC: Well they thought I was developmentally disabled. I did have a physical disability. I was there for 18 years. There were a lot of kids who shouldn’t be there at all. There were some kids who ran away from home, and when they got caught, they got locked up in Willowbrook.
DH: What is your earliest memory of being at Willowbrook?
BC: My mom and my aunt brought me there. I remember the nurses wearing a white uniform and the big white cap like they used to do.
DH: What was a typical day like?
BC: I’d get up at 5 in the morning, get dressed, breakfast, go to school for half a day, then I had nothing to do. You could only learn ‘til 5th grade. 5th grade was the cutoff.
DH: I understand that bathing and getting clothes was difficult there.
BC: Yes. On the weekends, there were no clothes. People would be sitting there naked, maybe sneakers on, or underwear. It was hard on the weekends. I hid my clothes under the mattress to wear again. It was a survival technique.
DH: How did you cope with the terrible conditions there? What did you do to make the most of your time?
BC: It was hard to compare. I had nothing to compare it with because Willowbrook was the only place I had ever been. I didn’t know anything else. I thought it was normal. There was one staff member who hated me, well there was a lot, but this one particular one used to beat me almost every single day.
DH: That must have been so hard.
BC: Next question.
DH: What kind of food were you given?
BC: Yuck. Disgusting. Every now and then they had good food. I ate a lot of cake! They served food they could give fast. They had 80 people and only 2 or 3 people to feed all of them, and they had to do it within an hour. So, it was an assembly line sort of.
DH: Did you make any friends?
BC: Tons. Tons. Yeah. I’m easy to be friends with! I’m still close friends with a lot of family advocates who had family members in Willowbrook. Many of the people I was in there with are in group homes, though some are independent.
DH: Did you ever get any visitors while you were there?
BC: Every 5 years or so. I came from a poor family and had 6 other brothers and sisters.
DH: How has your life been since you left?
BC: Cool! I get to wake up when I want to wake up, eat what I want to eat and go where I want to go. I had a long career advocating for people with disabilities, but I’m retired.
DH: Tell me how things changed when Dr. Michael Wilkins started working at Willowbrook and tried to tell people about the conditions of the hospital.
BC: He organized parents and I gave all the information because I knew the ins and outs of Willowbrook. The parents, they were shocked, they were shocked.
DH: They had no idea what was going on?
BC: Not at all.
DH: I read that Dr. Wilkins and others helped you sneak out of the hospital to meet with reporters to tell them about Willowbrook.
BC: You did your homework! I’m very impressed.
DH: How old were you when that happened?
BC: I was 21 years old. I just turned 70.
DH: Were you scared?
BC: In the beginning, yes. I’d never been out of the institution, and it was scary.
DH: How did you feel when Willowbrook finally closed for good?
BC: I was happy and proud because I knew I was part of that. And I felt great. Even after it closed there were other institutions, and I worked to close them. There still are a lot of them.
DH: Do you see any of your old friends from Willowbrook?
BC: I’m still friends with Dr. Wilkins.
DH: Do you ever see any of your family members?
BC: I do.
DH: Is there anything else that you think kids my age should know about the lessons learned from Willowbrook, and about the rights of the disabled?
BC: We must always remember that all people are supposed to be treated equally under our Constitution.
Daisy Hampton is an 11-year-old who just completed 6th Grade at M.S. 104 Simon Baruch Middle School in Gramercy. She is a disability rights advocate and recently founded Including You, a peer-to-peer mentoring organization that celebrates inclusion and brings volunteers together with kids who have developmental or physical disabilities or who face educational disparities due to poverty.