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Bill Bronston and Friends: Mark Marcario's Story

Produced by Dr. David Goode

Produced in 2005
Click the CC button to view captioning

Mark Marcario: There was another outrage taking place at Willowbrook, and that was human experimentation. Willowbrook was terrifically overcrowded [Inaudible] and one of the ways you got your kid into Willowbrook was to let him or her be injected with hepatitis. So that was another whole other issue that we're not really dealing with, but I just want you to know.

My son was born in 1968, and in 1968 there really wasn't very many community programs. In fact, you couldn't even get your kid into public school. The reason we got our kids into public school was that there was a lawsuit brought by the brain injured group. [Inaudible] well the city-wide group that eventually got kids with disabilities in schools. But to show you what kind of parents, what we were up against.

My son was born in 1968. He was my fourth child. And, frankly, I was a small business man and I knew nothing about nothing. So when we found out he had Down syndrome, I mean naturally we spoke to the doctor, and the doctor said, "Well, you know, the best thing to do is put him away, and, you know, get your wife pregnant again and come back here next year." So, I had three other children and they had never said that about my other three children.

So I said, you know, this sounds strange. So, naturally, we took him home. And I started looking. I said what do you do with a kid who has Down syndrome? And I remember I called Willowbrook as a matter of fact. And they said, "Well, we have no programs unless you want to make an application to put him in Willowbrook."

So as time went by, a group of us banded together, kids with Down syndrome, and we ended up, we started our own school and so forth. And that's how I met Bill. Bill came down and addressed us and told us about the conditions in Willowbrook, which I had lived on Staten Island all of my life, and, frankly, it was just a bunch of big buildings to me. I didn't know what the hell was going on there.

So what happened was, the issue was, where is the money going? And on Staten Island and other places where there are institutions, the money goes to the institution. And on Staten Island, the one community program that was on Staten Island was really run by the doctors from Willowbrook. Our goal was to try to get programs for our kids in the community, and all this money was being tied up in Willowbrook and the institutions that there really wasn't money in the community.

So there were two groups of people. There was the community people and there were the parents of the kids in Willowbrook. The parents of the kids in Willowbrook were under an awful lot of pressure because if I'm not mistaken, I think you were really supposed to pay for your kids to be in Willowbrook. So that kind of was out here.

So if you protested too loudly, you might get a bill. You know what I mean? So there was that whole thing, that it was hard for them, as Diana said, to really get out and protest whereas those of us who were in the community, we, I mean, we, you know, we became radical people because we saw that kids shouldn't be treated this way.

And by the way, let me tell you that my son Robin, Bill mentioned one of the kids on the film has Hirschsprung's disease. Well, my son had that. And basically, that's a disease of the colon so you don't have a normal bowel movement, and it it's not taken care of, you have some real problems. So we took… Our son was diagnosed, we took him to Columbia, they cut out part of your colon, they reattach it, and, you know, you live like a normal human being.

The reason I mention that is that when you look at pictures of the kids in Willowbrook. And these pictures we used by the people that were opposing us all the time saying, "What can you do with a kid like this? There's nothing you can do with a kid like this." Well that kid in there that had Hirschsprung's didn't have to look like that. And any Down's kid that was in Willowbrook shouldn't have been in Willowbrook, for the most part, as far as I know. Nobody belongs in Willowbrook.

The thing about Willowbrook is it was all reversed. The good patient was the one that stood on the chair and looked at the ceiling all day. If you were a bright, inquisitive, curious kid, you were a bad patient and they tried to stop that.

So it was all strategy of using the community to help the people of Willowbrook that Willowbrook parents who were under tremendous pressure. And, of course, Bill was the driving force and this how this is all came about. And when he says that there was a lot of pressure, believe me, there was a lot of pressure. Because all the politicians, everybody, you know, was saying Bill was a radical and so forth. Don't listen to him. You can't do anything with these kids and so on and so forth. But that's how it all came about. And now there are more programs in the community, but there still aren't enough. I mean it's… There's a whole question of what do you do with your kid when he gets older and you're gone? People in the community still oppose group homes. The politicians still don't want to pay for group homes. They'd still rather put kids in institutions or nursing home or where ever.

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