Interviews with the Leaders of Pennsylvania's Intellectual Disability Rights Movement. A collection of stories from advocates, self-advocates and family members who took great risks to ensure the safety and freedom of people with disabilities in Pennsylvania. From the Right to Education, to the closing of institutions and the move toward self-determination, Pennsylvania has paved the way for national policies that have led to widespread reform.
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Visionary Voices Documentary
Once Gina was born, our whole life situation changed. Laurie was born with Down syndrome. My in-laws kept saying to me nobody was ever born like this in our family. This is the end, you don't have to go to any other doctors, he's not going to be any better than he is now. People thought that if I touched you, they would automatically get it, it's like a disease. The minister said that he wouldn't baptize a mongoloid idiot.
Laurie was in our backyard playing on the swing with her doll, a group of neighborhood boys, little boys, came around and they started to call out her name, "Laurie, Laurie, come here, come here retard, come here." And then one little boy picked up a rock and threw it at her, and then the other little boys started to pick up rocks and hurl them over the fence at her. And one of the rocks hit Laurie right in the middle of her forehead and knocked her down to the ground. And she just lay there, didn't move, and she was bleeding. My mother just picked her up and carried her from house to house crying, "Look what your son did to my baby!" I think that's when my parents seriously started to look at placement for Laurie because they didn't feel that there was any place safe for her at home.
When we had Gina, she was unable to go into school and the only way that you could get services in the city, we were told, was if you went and registered them to go to Pennhurst. After great reluctance, I did go and have all the required assessments done and everything. And of course at the end, they told us we should place here in Pennhurst, and I said that wasn't going to happen. And they said, "Well maybe you'll change your mind, we'll put you on the waiting list." And I said, "You can put me on anything that you want, but she's not going to Pennhurst."
It's not like I knew this place, it's just something that was in my head that this is not someplace she was going to go.
MAN: The horrible and almost inhumane conditions that prevail at Pennhurst are not the fault of a handful of dedicated doctors, administrators, and attendants employed there. No, the children, as they are all called, who are rotting in their cages, cribs and beds, can thank society for their dreadful plight.
The sounds in Pennhurst were sounds of pain...neglect... they would just moan... they would just cry, they would just be banging their heads. I mean, some people did it out of frustration, you know? I want a feeling, so I'll bang my head; they had to wear helmets all day long. It was incredible, and what's even more incredible when you met people who were slightly retarded, or not retarded at all, it was a dumping ground for anybody, and you wondered why they were there, and how they in their own minds went downhill instead of uphill. That was horrible, that was horrible to see.
Bill Baldini's work exposed Pennhurst, now he was a reporter from Philadelphia, he could have gone to the Western Center, he could have gone to Polk Center, and he could have gone to other places and seen equally horrible things. He happened to go to Pennhurst, and I think he did a real service for the state by doing that. And he happened to have the guts to knock on the lieutenant governor's door, and say, "Lieutenant Governor, this is going on in your state."
I was a rebel; I was saying we got to make changes my whole thought being, my child hasn't got any education available to him. I want to see if that can happen; my child isn't going to end up in Pennhurst, because I'm not going to let it happen.
WOMAN: When Dennis Haggerty got us excited at our national convention and Gunner Dybwad got us excited, and we decided we really had to do more than we were doing. We knew we had to have help, and we got Dennis to find us a lawyer. I knew of Tom Gilhool, and I knew he was one of these upstarts from Yale, I think he was from Yale. When I went to his office and had quite a meeting with him, and explaining what our cause was. But he seemed to be up on our cause before I even introduced it to him. I said, "Thomas, if you agree to take this case, I would like to take you to Harrisburg and introduce you to the board of directors of PARC, Pennsylvania's Association for Retarded Citizens. And I said, "But do I have to teach you now about retardation?" And when he said to me, "No, my brother's retarded," I could have fallen off the chair, I was so amazed. Everyone in the room at the ARC had had the experience of being unwelcome in schools. Families with children with disabilities found little solace in the few services that they gathered, they depended upon the State Department of Education, and the School District, and upon the State Department of Public Welfare, and its instrumentalities. And it was very hard for them to imagine that any good could come out of suing the very people upon whom they depended for services.
ELEANOR: Tom had three choices for us and one of them was to go for the right of education, and do it on Brown because we could win. And we at first said education, we're trying to get people out of the institution, and he said, that's the first place to try, and he was right.
Parents from different places around the county, we met in each other's homes. We used to laugh about peanut butter sandwiches in the kitchen... 'cause it was very informal, and nobody tried to put on a big spread, we wanted to talk. I remember one mother had a very difficult child at home; we we're trying to convince her to send her kid to camp. And she was afraid to let her leave the house. And I said, "What do you need?" And she said, "I need help... I just feel like screaming help! 'Cause that's what I need, help." That was one of the best vocalizations I've ever heard from a mother, and that's exactly what she did need... please, you know, help me. Community help me, do something, don't just leave me alone.
The class that Peter was to join was in the basement of the building, which should have been a clue for me from the beginning, and I entered the room and the room had the furnace in it. Also, the windows to the room were way up high, and because it was raining, they were sort of dripping... and the children were there and they were making potholders. The whole environment said low expectations, these children, we do not expect much from them, and we're not going to give them very much. I stormed up the stairs and stormed into the Principal's office, and announced that I was probably going to be one of his new parents, and that I found that classroom totally inaccessible. And he said words that are burned in my heart... He said, "They don't care." "They don't care." And that was the beginning... one of the beginnings of my transformation from being a concerned mother to being an activist. They don't care -- of course they do! And of course that means we have to care triple.
DEE: This mom had come to me a couple of times, she was trying to move her daughter, she had a daughter with significant disabilities, living in a house where there were steps, when she had really had difficulty using them, and with people who were a bit abusive, and she was very vulnerable. And she really was having a hard time with the agency getting her moved. And finally I said to her, "Well, let's meet together with them together, I'll go with you." We went and met with a room full of people from the provider agency, you know, who were banging on the table saying why they couldn't do what she wanted, which seemed to me was pretty simple. When we walked out of the meeting, it was dark and we walked back to the parking lot together, and she started to cry. And I said, "Oh, I'm so sorry I failed you, I wasn't able to get you what you wanted, and I feel so bad." And she said, "That's not why I'm crying." And I said, "Well, why are you crying?" She said, "Because it's the first time somebody stood with me." And you know, those are the things sometimes that make the difference. It's not necessarily that we win the battle, or that we get you everything you want, but that we stood by your side.
Richard Young took me to the first Speaking for Ourselves meeting. I was very scared, I didn't know anybody, of course. Roland Johnson was the President then, he somehow figured out how to make me feel welcomed and involved. And when I started to learn how to speak up, what I had to say, he was very impressed by it. Of course Roland was in Pennhurst, and his main message is to free our people, and the one that sticks to everybody's mind is who's in charge? That was a big shift, back in those days, 'cause we didn't have the power, 'cause everything was controlled, was either run by the agency... where they didn't have no say-so. People didn't know how to make decision, simple ones... they didn't know they could. Because what we heard was if I make this decision that I wanted to do this, then I'm going to get in trouble. They were all afraid to say, speak up and say, I don't want cereal, I want pancakes. How do you teach somebody that never was taught to make decisions on the basics? They kept asking us, "Can we go ahead and..." And we kept saying, "Go ahead." "I'm going to get in trouble if I take this apple." I said, "No, you're not, you're with us." And we also had to educate the professionals, even though the county, Philadelphia County was in back of us, we still needed to educate them. Because they were in the mind set of people, wow, this was a big shift, and they didn't even know how to handle it.
Everyday Lives was the foundation for everything. In '87 when I came to state government with Steve Eidelman in the lead, we said, well, let's make a plan about what we should be doing in the future. I think we spent two years doing that...painful. But it was watershed. So we asked the question, what do people want? It was a simple question, what do people want? And because self-advocates were listened to, we heard things like, I don't want to take medication that I don't want. I don't want to live with people who hit me. I don't want people to make fun of me. The wants were really devastating, really devastating, and it sobered everybody up. And then we spent a day saying, the question that Guy Caruso and Jerry Provencal asked is, "If everything could be the way you'd want it to be, what would it look like?" And they had this big paper on the wall and drew pictures of everything. And it was pictures of going to school, and you know, getting married if you wanted to get married, and having a job, and going to the parks, and voting, and all that kind of stuff. And one of the dads who was from the ARC, whose daughter lived in an institution, and over his dead body was she ever going to leave that institution, he looked at the wall and said, "Oh my God! That's just the life the rest of us have." And that's how "Everyday Lives" got named; it's just a life like everybody else. I think the thing I remember most fondly was when Larry Pace and Nancy Thaler came into my office and they showed me the draft copy of "Everyday Lives," full color, you know, mocked up, ready to go. And I thought, "Wow, this is real." And the governor's office had signed off on it, and to me that was the most amazing thing that you could get something like this, some vision out of government, I mean, this was a government document, it said, Robert P. Casey, Governor, Commonwealth of Pennsylvania, on the document. So that was a pretty proud moment, it was like ok, we can now take these ideas and start to put them into action and use them as the basis for going forward.
DEE: I was trying to get Gina into the office of Vocational Rehabilitation Services, and the guy who was the head, he was saying how everybody could get services and the law said that. And I stood up and read him a letter that said Gina wasn't eligible to go, because of her significant disabilities. And he was certainly annoyed by my presence in the audience, and then I followed him to Harrisburg and the next time he stood up, it was in a meeting with a lot of people from the state, and I read the same letter again. Several months later, he called me on the phone and said, "You know, you're making a reputation for yourself all over this state." He said, "You're nothing but a little troublemaker." And I said, "Really?" And he said, "Yeah." And I said, "Well, you know, I think that's what they called Martin Luther King, Gandhi, and Jesus Christ, and although I'm not worthy to stand in their shadow, I just consider what you said to me a compliment." You can't be afraid when people confront you and tell you how awful you are because you stand up for what you believe in.
DEBBIE: Everybody in Pennsylvania and the National know what Roland, Mark, Justin, stood for -- justice for all. We are all in this together, and that's what I keep telling people, we are all in this together, we cannot do this alone.
I like her, she's my sister. That's right, we're sisters. Don't be shy, ok? I won't. Because we want to hear your story, we want to know about you, ok? And so do other people, 'cause you have a good story. Yeah. Yeah.
You're my big sister. Yeah. Do you help me? Do you take care of me? Yeah, we take care of each other. Yeah.