ALISON STEWART, host:
For regular listeners of this show, you know that earlier this week, we told you about a story gripping the U.K. There was this school for troubled children that investigators believe may have been a place of abuse and neglect and behavior bordering on torture.
Now here in the States, another such place existed. It's simply known to many people as Willowbrook. The infamous New York state-run institution on Staten Island was filled beyond its capacity by 2,000 people in the '60s. Some of the residents of Willowbrook State School were used as test cases for hepatitis studies. Others were just left to languish, some abused and living in squalor with little medical or mental-health care.
It wasn't until a print reporter named Jane Curtin detailed the scene, and then, aggressive 29-year-old investigative TV reporter - you might know his name, Geraldo Rivera - went in with hidden cameras - that everyone got to see the world of the forgotten.
Our next guest, Vanessa Leigh DeBello, is the daughter of one of the former residents of Willowbrook. Vanessa is working on her mother's memoir and joins us now in the studio. Thanks for coming in this morning, Vanessa.
Ms. VANESSA LEIGH DeBELLO (Daughter of Willowbrook Resident): Thank you so much for having me.
STEWART: So this will explain a lot. Tell us the title of the memoir, which the name of the book is going to be.
Ms. DeBELLO: It's called "Moron: A Daughter's Story of an Accidental Childhood in Willowbrook."
STEWART: So people are probably hearing the word moron and thinking what a harsh word to use, but that's one of the words that was used to describe the people at Willowbrook. Can you explain how they were classified?
Ms. DeBELLO: Yes, actually that is a scientific term that was established in the early 1900s, and there's three levels of feeblemindedness, idiot being the lowest grade, imbecile being a middle grade, and moron was considered more of the high-functioning grade, and so based on IQ exams that they gave the children and psychological evaluations, they determined what category they fell into. And so my mother had an IQ of 53, so she was considered a moron.
STEWART: What was going on with your mother that she ended up in Willowbrook. What was with her - what was her issue? What was her health issue?
Ms. DeBELLO: Well at 18 months old, she wasn't walking or talking, so as naturally any parent would be concerned, so her parents took her to see a specialist, and their recommendation was institutionalizing her at Willowbrook.
STEWART: When did you first find out that your mother had been institutionalized at Willowbrook?
Ms. DeBELLO: Well, my mother was always very open with us as children, so she had mentioned it to us, but as a small girl, at about five or six years old, I didn't really understand what that meant, but my mother was still in that mindset because she would refer to herself as I was a patient at an institution, and that's where I grew up.
STEWART: How long was she there?
Ms. DeBELLO: My mother was there just - her parents left her there a few days before her third birthday, and she wasn't out of their system until she was about 19 years old.
STEWART: So she really did spend all of her formative years at Willowbrook, during a time when it was a very difficult place to live. Can you share one or two stories that your mother told you that will give people an idea of what she was living through?
Ms. DeBELLO: Well, I have asked her many questions, and even looking for the smallest bit of detail to find out what life was like there, things that we even take for granted. I had asked her about just something as simple as brushing their teeth. Did you brush your teeth on a regular basis, and did you have toothbrushes?
And she recalled that they were supposed to have toothbrushes, but oftentimes they would go missing, and they wouldn't have them and that the children would have to brush - if they even attempted to brush their teeth, they would use their fingers. That's something she showed us when we were younger. She said if ever we're on vacation or something and we forget our toothbrushes, we would brush with our finger.
And so when my mother would go to the dentist there at Willowbrook, her mouth was filled with cavities. And as a little girl, I remember seeing - looking inside her mouth and seeing all that silver, thinking wow, what is that, and when am I getting mine? And she explained to me that was from the lack of dental care there.
STEWART: What about the medical care she received?
Ms. DeBELLO: The medical care there was also very similar because poor hygiene and conditions. Often, she would suffer from skin rashes, and she would say they were always poking and prodding them with different needles and injections.
STEWART: From - I know you've been researching quite a bit about Willowbrook. Do you understand why Robert Kennedy, who was a senator at the time, visited Willowbrook, and he called it a snake pit?
Ms. DeBELLO: Yes.
STEWART: Do you understand why?
Yes, I completely understand why from the conditions that my mother has explained to me, that just from the smell of walking in there. People have described it being that the animals in a zoo have received better care than the children of our state.
STEWART: And certainly one of the most striking stories about Willowbrook that came out is that some of the children were used to test hepatitis cures or various hepatitis trials. How was that possible?
Ms. DeBELLO: Yes, that's right. Well because of hygiene conditions, for starters, it was very likely that all children would contract it, and it has been stated that 100 percent of the population did have hepatitis. It was contracted through poor drinking water and facilities. Some children were injected directly, and it's also been stated that some of the children were fed feces of other children that were already infected with it to see how the virus would spread through their bodies.
STEWART: From your research, how did this go on for so long, and people didn't seem to do anything about it?
Ms. DeBELLO: Well, I think the mentality of that era really was that let's put them somewhere where we can't see them, and if anyone has ever visited the Willowbrook campus, and even as it is now, as the college there, that it is very isolated by trees and hidden. So out of the sight of the general public, it was also out of consciousness.
And parents also were very afraid that if - those were involved - if they spoke up, that there would retaliation against their children. And then there's a large group of parents who left their children and never came back.
STEWART: We're talking with Vanessa Leigh DeBello. We should point out that Willowbrook has since closed. You mentioned a campus. Can you stick around so we can finish up this conversation, because there's a couple of other questions I want to ask you about your mom, if you don't mind.
Ms. DeBELLO: Absolutely.
STEWART: All right, stay with us here at THE BRYANT PARK PROJECT from NPR News. We're talking to Vanessa Leigh DeBello. She's a daughter of one of the former residents of the Willowbrook State School. Stay with us.
(Soundbite of music)
STEWART: Hey, thanks for listening to THE BRYANT PARK PROJECT from NPR News. I'm Alison Stewart, along with my partner, Rachel Martin, and we're talking to Vanessa Leigh DeBello about a story that was a big national story 30 years ago, as a very important part of her life.
It's about Willowbrook, and if you grew up in the - I was just sharing with you, Vanessa, I grew up in this area, and I remember when the Willowbrook story broke about this state institution where people were just living in squalor being treated so terribly, and they were some of the people who needed most our care, people who had mental issues, people who had mental retardation, developmental disabilities, and they had just sort of been left for forgotten.
Then there were a couple of exposes that were done through the news media that really changed the way that people were treated at these institutions. I'm wondering, you know, you have such a personal story because your mother was there, and you've spoken to her about it, and I'm sure it's just affected every aspect of her life, but I'm wondering what impact do you think your mom being at Willowbrook had on your family and the way you grew up?
DeBELLO: Well, that's a very good question. Even in just small areas of dress, for example. My mother was always dressed very poorly in the institution. She was never given any new clothes, and as an adult, she never felt a sense of self-worth, and therefore she never bought herself any new things.
Many times my father said here, please, take the credit card. Go buy yourself something, and it's so hard for her to do that for herself, and now myself as an adult, I find that more than half of my wardrobe is hand-me-downs and second-hand clothes.
STEWART: Because that's what you learned along the way.
DeBELLO: Yes, yes, absolutely.
STEWART: As you mentioned, Willowbrook was closed in 1987. It was a landmark decision that helped establish group homes and other more-personalized options for people with mental retardation and developmental disabilities. What's there now, for people who don't know?
DeBELLO: Right now it's the College of Staten Island.
STEWART: And is there any semblance of what went on there? Is there any sort of - if you walk down there today, on the campus today, would you know what happened?
DeBELLO: In my opinion, no.
STEWART: And I guess that's why it's important for you to write this book and let people know what happened to your mom and others.
DeBELLO: That's right. There needs to be more awareness and education so that we don't see anything like Willowbrook ever repeated again.
STEWART: There's one thing you want to let our listeners to know about your mom. What is it?
DeBELLO: Well, my mother actually was not mentally retarded. She was misdiagnosed, and she in a lot of ways was like an insider who was able to see what was going on and was completely aware of the circumstances, and abuse, and neglect that was being perpetrated against herself, as well as the other children.
STEWART: And now you, too, can let other people know what happened there. Vanessa Leigh DeBello, daughter of Willowbrook resident. You're working on a book about your mom's experiences. Thank you so much for being so candid. We really appreciate it.
DeBELLO: Thank you for having me.
NPR transcripts are created on a rush deadline by Verb8tm, Inc., an NPR contractor, and produced using a proprietary transcription process developed with NPR. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.