Chapter 4: Advocacy

Lisa: (04:06:11:00) Eleanor we were talking a lot during our last couple conversations about your family, your childhood, your husband, your children, and today I wanted to talk a little bit about our advocacy work. And so the first question I have for you is when did you first reach out to other parents who had children with disabilities?

Eleanor: (04:06:32:03) Probably when Richard was about two and that would have been right around the time we went to Philadelphia to hear Pearl Buck speak. There were several of us that went so we were already talking to each other but just talking to each other saying oh you've got a kid with a problem too but it was at that point that we started to form into a more definite group and as soon as we did that we began to reach for other people because we wanted to help them also because we wanted more children in our little class we were able to start so that they would have friends. One just led to another and we finally had parents from different places around the county- we weren't a big group but we were probably 20-25 people and we met in each other's homes. We didn't have an office or anything like that and we met in each other's homes- sometimes in the kitchen- 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 and see what we could do to move along further. Particularly to try and get the school system involved.

Lisa: (04:08:49:07) You were saying Eleanor that you met in the kitchen very informally in peoples homes can you tell us what types of things parents talked about when you met?

Eleanor: (04:09:01:01) The kinds of things that we talked about, when we got together, were mainly things that we could do for each other. Not necessarily babysitting, nobody wanted to babysit somebody else's kids, although we did help each other. We tried to find out what each one needed the most and try to work toward that and of course what we needed the most was places for them to be out of the home. We needed our little pre-school that we had. Then we began to work for summer. What are we gonna do all summer and these children need something to do. They've been used to each other and we managed to get together some money, we probably had a bake sale, I don't remember. And we got some help from one of the agencies. One of the... I'm trying to think of one of the names of them. Men's groups. Men's groups. They were usually... we would go and give a talk at their lunches. They were always looking for speech makers. And we all learned. First we said "no no no not us" but we learned how to do that. Cause we had a little message and they didn't want a long speech or particularly intellectual one and so it was easy to tell them this was a problem we had in the community and we need help for these children. So they helped us get some camping equipment together and we were able to rent a schoolyard in the country. Which was perfect cause it had a swing and I don't remember that there was a slide but there were a couple swings and we had some little equipment we took. Of course they all packed their lunches. They all took an extra turn of clothing. We found somebody who was willing to work for us for a very small amount. I mean really, very small. Bless her heart, she was a former teacher, retired, and kind of looking for something to do. She wasn't real old. She was just retired. That worked great. We did that for several years. We were working to try and get the school board interested.

Lisa: (04:11:47:10) Eleanor you're group met informally as you said but at one point you became more formal and you became a chapter of the ARC can you tell me a little bit about how your group became part of the ARC?

Eleanor: (04:12:01:19) The group- we were already part of the ARC very early maybe not for a year or two but after we had been to the Pearl Buck speech and met other people from other counties we formed our own group and we had a little constitution and we were part of the putting together of the state association we paid our dues because we charged each other dues so we had a little bit of money and we could pay our dues to the state association. At that time you only needed 10 people to become a chapter. We were interested in the state and we did have somebody on the board at the state association. I don't remember now. It wasn't... it was not I. I did not do that until later. But not in the very beginning. I was very busy trying to get things together in the community for Richard and for each other.

Lisa: (04:13:14:06) Eleanor I wonder if you can tell me when you first became aware of the Pennhurst state school?

Eleanor: (04:13:21:14) While we were working together we did meet people in our community who had children at Pennhurst- not at home- we knew about them somehow but it wasn't easy because people who had children at Pennhurst didn't talk about it much. They began to shortly after Pearl Buck. The parents who had children there sometimes had difficulty going to see their children because Pennhurst was not exactly around the corner from Philadelphia. Easier for some counties but it isn't a place where you take the bus and you're there. We decided we would run a bus every month once a month so that people could go see their children. We had the bus and then I think it was Chester county a couple of parents there were active in getting a picnic together and so we made sandwiches and took them out to the picnic [?] but we couldn't get in the buildings. They also had a circus come once and our chapter gave money so that they could have a circus so the authorities at Pennhurst began to trust us. We had what they call "Sunshine clubs". We could write out birthday cards and they would take them and give them to whoever was having a birthday- that kind of thing and Christmas cards and gifts but the gifts were the kind you would give to the marines- they had to be unwrapped and unlabeled but they were quite willing to have some toys thanksgiving and I think they began to trust us and we were finally allowed to come in.

Lisa: (04:16:21:25) Eleanor I wonder if you can tell me when you finally did get to visit Pennhurst actually the buildings and not just the grounds can you describe for us what you saw and heard on that first visit?

Eleanor: (04:16:33:15) On my first visit I don't remember- I really don't, but generally I remember. The first several visits were guided- they were guided tours, they weren't just come in and visit. Later, we were freer but the first time we were taken to a ward and later we learned that the ward was all dressed up for us. That really didn't matter- they could never dress it up enough there were some thing you saw that you didn't like. We had children come up to us without any pants on. Later when they didn't always guide us that was when I saw the real bad things like the picture I just showed you of people sitting in a dayroom they're partly clothes they're not all clothed and sitting in pools of urine the place was not nice to smell. They would rock, rock back and forth. I guess that was the only joy they had, was rocking. They were not playing with anything they did not have dolls on their beds. Our first trip they were all dressed up with little dolls on the beds later you knew that was just a big phony.

Lisa: (04:18:32:13) Among some of the things you saw at Pennhurst, did you see residents that were required to work on-site at Pennhurst?

Eleanor: (04:18:46:23) The residents of Pennhurst- some were employed there and sometimes they did not receive money. One of the- we had someone on our board who was very interested in making sure they got paid and so there was a push for that at one time and we were successful. There was a farm- a very nice farm, I think it's a golf course now. There was a farm and were animals to tend and I'm sure some of them enjoyed that- being with the animals. They could pet them, they could talk to them. They were, they were doing something that was productive. They knew that ,their work, even though they weren't getting paid was appreciated. It was. They had some that worked in the various employee's homes as housemaids- I don't know whether they got paid or not. I don't know. But there were some that were. The superintendent always had a staff of residents working in their home.

Lisa: (04:20:01:06) We there any jobs that's the residents were required to do that you thought were inappropriate for them?

Eleanor: (04:20:08:02) I can't say that I knew much about it. I know there was a laundry. I know they worked there and I know it was very hot. I didn't spend time there. I heard stories about how it was dreadful and they didn't like to work there but I was never there myself.

Lisa: (04:20:27:19) One of the things Eleanor that you have mentioned in the past in some of your public speaking is that you did learn that some pharmaceutical companies were actually trying out some of their drugs on residents at Pennhurst maybe without the residents parent's full understanding. I wonder if you could talk to us a little bit about that?

Eleanor: (04:20:51:18) We did find, well, there were pharmaceutical companies were very involved of course. It was good business and they had a project at one time it was for the measles vaccine and they sent out a slip to parent's consent that they could test for measles. Whooping cough. Whatever. It wasn't just for one thing, it wasn't just for measles. It almost said "etcetera". When parents signed it they were giving them a blank okay. Some of them wouldn't sign it and then they got angry at them and some of them were afraid not to sign it (?) bad for their children, and some were very proud to have their children in the project. The (?) vaccine I think was tested in one of the ones around Pittsburgh. They were very proud that their children participated in the research and I guess you have mixed feelings about that. I was appalled. I wouldn't let them test any kid of mine unless I knew an awful lot about it. They thought that was really wonderful and I guess in a way it was something their children could do that is helping the world but I'm not so sure it should be a child in an institution. I asked one of the doctors we were fighting about it. I said to him, "Would you give this to your son?" He said "of course!" I said, "Well did you?" – "Oh well no." (Laughs) "Not yet" or something "but I would." (Laughs) But he didn't.

Lisa: (04:23:31:22) how did you respond to the conditions at Pennhurst when you would visit? How did you feel when you would leave Pennhurst, seeing the conditions there?

Eleanor: (04:23:45:24) How did I feel when I was at Pennhurst? I felt terrible. I was determined that my son would never be there and he never was.

Lisa: (04:24:41:21) As you know Bill Baldini a local reporter did a very groundbreaking piece called "Suffer the Little Children," it was aired over July 4th weekend in 1968 and I'm wondering if you saw it when it was televised?

Eleanor: (04:25:20:15) I was on the grounds when Bill Baldini came to Pennhurst. We didn't meet- he wouldn't know I was there I wasn't in the room with him all the time only once or twice. I was with a man who at that time was the president of the Philadelphia group- we were going to a regional meeting of the ARC's and we went out in the morning because he wanted to see his brother who was a resident there and Bill Baldini was on the grounds. I don't know how I knew it was Bill Baldini but I did. I don't think I met him but I was there and saw where he was going and we went on our way. When it came out I said oh that's Bill Baldini that we saw. I remember his being there and I certainly did watch the program and we were so excited and so pleased that he did that for us it was really a breakthrough because it helped us move along more quickly. We were trying very hard to get some things done there without great success. This was a big help for us and it helped for us in the community too because it, people saw and they didn't want their children to go there.

Lisa: (04:26:55:21) Eleanor what was the reaction, if you know it at all, of parents who did have children in Pennhurst?

Eleanor: (04:27:03:03) To Bill Baldini? I'm not sure what their what they thought, about Bill Baldini but I know that a, I know that some of them, yes I do know. Some of them were very pleased and some of them were saying its not that bad not where my child is. And I remember one woman saying "how can you support that Eleanor, how can you support that?" and I said, I used her name which I won't now, "come on you know me. Don't try and tell me that's a great place." She had a child there and I said "you know better." Cause she was saying to me I was a trader and I said, "No. No. You know what it's like there." And I know she was trying to get her child out into a better place but... Some of them were really upset about it- they didn't want people to know it was- and they didn't want to think it was that bad themselves there was some denial because they were trying their best. It's very hard- its very hard for those parents and I never liked fighting with them. I just said I can't fight with them. They were told- the community didn't do anything for them and the neighbors didn't do anything for them what are they supposed to do? I remember one mother had a very difficult child at home and I remember once we were talking about what we you need, what do people need. We were 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 because that's what I need, help." That was one of the best vocalizations I 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." So they had a tough time. The parents had a very difficult time.

Lisa: (04:29:12:03) Indeed. And then I think around 1970 the Pennsylvania ARC decided that it had to act to close these institutions and find better solutions for their children. Once it was decided by the state ARC that it would work to close institutions can you tell me what would happen next?

Eleanor: (04:29:37:23) Well do you, well when we first, when Dennis Haggerty got us excited at our national convention and Gunnar Dybwad got us excited, we decided we really had to do more than we were doing. We had been trying to making things better and it was a lost cause. We tried to do things like new bed spreads or pictures on the wall but it doesn't work, it doesn't- there's too many people. We certainly saw that clearly that it didn't work. We knew we had to get help and we asked Dennis to find us a lawyer – did I speak of this before?- and he came up with Tom Gilhool. Tom had three choices for us and I don't remember them all but I think you have them if you don't, make sure that Temple gets them. I do not have it in my file or I'd go get it for you. There were three choices and one of them was to go for the right of education and do it on Brown because we can win. And at first we said education we want to get people out of the institution. He said that's the first place to try and he was right. So that's the course we took we went for the right of education and as it turned out the first ones that went out were from the institution because they already had some classes and they were included too and they were glad to, so they put them all on the bus and sent them to the public school. Public school was a little shocked, I think, I suspect. (laughs) But it worked. It worked. I always called that our foot out the door. They were the first ones that went out and bit by bit schools picked it up of course.

Lisa: (04:31:38:29) Eleanor you actually worked at the public interest law center when Tom Gilhool was preparing this landmark case - eventually what became the PARC Consent Decree. What was that time like? Can you recall?

Eleanor: (04:31:53:20) Well we were working on the right to education and I got a job with Tom Gilhool. I'm not sure if it was the first lawsuit or the second. I would have to look it up because I was involved with them of course, on all of them. What is was like working at the public interest law center? It was fascinating, exciting, difficult, but there was so much that needed to be done it was hard not to have some successes and of course because we had an excellent lawyer we had a lot of successes through the law but we were also picking them up in the school systems before they were even told "you gotta do it." They were doing some of it on their own. Which helped a great deal. It was very interesting to work there and work on the lawsuit. We some, we had a restaurant across the street where we'd go for lunch. We called it the Boardroom. It may have really become the name, I'm not sure. But we would come back and if somebody couldn't come we'd ask, "was it a 2 or 3 napkin lunch?" That meant how many notes you wrote on the napkin while you were having lunch. It was that kind of a crazy time it was exciting it was fun it was very hard work and it was a great part of my life. My husband said it made me ten years younger. I think it probably did. Because I was probably the oldest one in the office. I hadn't retired yet. I was 60 when I was there.

Lisa: (04:33:41:25) Eleanor were you in the court room for the proceedings around the Park Consent Decree? Can you describe a little bit about the atmosphere when the ruling came down?

Eleanor: (04:33:58:02) Well, I was of course in the courtroom while this was going on and very often I was a gopher they'd say, " take this and get it to the Xerox place and get 6 copies made." So I would go to the nearest place. It was exciting to be there. And some very wonderful testimony of course and we were all listening intently and smiling being happy when something happened that was fun which it did. Some of the testimony if you get to read it is actually very interesting. I remember one woman saying, " and my Johnny came to see me, " she was in a retirement place such as I live in here up in the Northeast, "and he came out and he took me to lunch. My Johnny took me to lunch! Imagine that! He paid the check!" Because he was now living in the community and she was so thrilled. So cute about it, "he took me to lunch."

Lisa: (04:35:12:26) Eleanor, so all of... you were so connected with parents and you just a few minutes ago described a parent very eloquently saying she just needed help. You know and all of the frustrations parents felt because of the lack of support you know, and the difficulties of keeping children at home. So when the PARC Consent Decree was announced and years later and when Pennhurst closed, did you get a sense that all parents were happy about the trend of closing institutions and children moving to the community?

Eleanor: (04:35:51:06) The PARC Decree was fascinating to work on. We were thrilled with it. But not all parents were happy. No. They had been told that their children could not succeed. They had been told that they shouldn't be in the community. That they weren't going to be good for the other people in their family. And they were afraid. And they were afraid to bring them out. And that's of course from the Pennhurst people coming out and to live in the community. But people in the community with their children going to school that hadn't been to school were just as worried. The children had not been in school. Now some of us had been lucky enough, as we were in Doylestown, that we had a small class in the Doylestown public school before the Consent Decree and it was called permissive. It wasn't obligatory, it was permissive. We had managed to get something through on regulations in Harrisburg that permitted the school board to do that and they got paid. Otherwise they wouldn't have done it with no pay. No tickie no shirtie. Don't say that. But you get the idea. And so we had done it. But for the other ones that were starting, they were sure that the kids in the public school were gonna perhaps fight them or not wasn't them there or the teachers weren't going to be nice to them. So it was a difficult time for parents. Strange enough it was always the parents that would be our first stumbling block at every new thing we tried. It was always the parents because they were afraid. They are so afraid something is going to happen to their children is gonna be bad when what is happening isn't so good. I mean I'm talking about even the ones with kids at home. You know it's a burden on Mom and she's yelling at them probably. She's saying, "help, help please help!" The woman who said that to me was very worried about sending her child to summer camp. Even though we assured her that it was okay and there were plenty of people. She finally did send her and it was very successful. You know for a weekend or whatever. A very short, short time to try it an a little more later. The parents were worried and very often fought us.

Lisa: (04:38:33:01) What did you say to parents that fought you Eleanor?

Eleanor: (04:38:38:01) Well it's very hard you know, what you say is, "you don't understand, you really don't understand Susie. This is going to be okay. Look at Richard. He's doing alright. Or look at Annie over here. She's doing fine and she was never in school." "Well they're different." And probably they were. They were all very different actually. Cause the group, the first class, they were all different ages, all colors, all degrees of retardation. They were different. There were 10 kids and they were just as different as 10 kids could possibly be. What we could say was, "Give it a try. Nobody's gonna hurt, you can go the first day if you want to." And uh, they gradually, they gradually joined and got in with the group but it took awhile. It took awhile. With each new thing. And getting into the community was even worse. That was sheer terror. Especially if they were gonna bring their child home from the institution into the community. Ohhh that was terror for them. It really was, they were very very frightened. They were sure there were going to be nothing, there kid was going to end up laying on the sidewalk, you know a street person. Which didn't happen of course. Parents well you're a parent, and you probably have qualms the first time one of your children asked to do something that's different. Ooooo help!

Lisa: (04:40:24:17) I had that this weekend, yes. Eleanor, after PARC consent and school were slowly opening, eventually Pennhurst was closed, and people were moving into the community...

Eleanor : See my brick?

Lisa: Pennhurst brick?

Eleanor: Yes! That's Pennhurst.

Lisa: Tell me about your brick.

Eleanor: (04:40:40:11) That brick was given to me just recently. When Pennhurst closed I said I wanted to throw the first rock. And they wouldn't let me. And then I said I want a brick. Well I want a brick. And they wouldn't let me. When they were taking some of the buildings down. And a friend of mine came to visit me just a few months ago and he said, "I have a present for you." And that's what he gave me. He had been out there. Jim Conroy is very active. He's in our group at Temple. He's very active with the group's that's trying to make a museum and an alliance of memories of Pennhurst and he had been out there and he brought this to me. That's my great trophy.

Lisa: (04:41:30:24) If that brick could talk.

Eleanor: Pardon?

Lisa: If that brick could talk.

Eleanor : Yes I wish it could! It's got dirt on it. It's not been scrubbed off clean. Never will be. I'm gonna keep it just like that.

Lisa: (04:41:44:20) So after this movement, then community living started you could become perhaps less involved as an advocate for others and really focused your attention to your family and your child with a disabilities needs but instead it seemed like you became more active and I'm wondering if you can tell me a little bit about your work with the ARC, the positions that you held there?

Eleanor: (04:42:13:15) As things were evolving- it was quite a number of years involved you know, it didn't just happen- all the time Richard was in programs and I was very engaged with those but I was engaged with getting other things that the ARC wanted to do and start which was needed for other people and it was very interesting. I moved from my local to the state association and got to know some things about Harrisburg and talk to , for committee meetings and testified. Which we all did. Most all of us that were willing to testify. Some people were scared I was scared the first time but it was really easy. It was just like here, talking to you now. I did some of that and then I somehow got removed of that because the state was involved with the national and I got involved with the national and I did some things on the national level- education, being sure that other people got information as needed and developing programs with national support. The right to education did become the right to education for all handicap children. That of course came directly from Pennsylvania. Other states became to pick it up and I did some training. Out of it came working with other states exchanging ideas which was very important but began to pick up the interest of self-advocates. That was fun. I enjoyed that part. And out of it, through working with other states came exchanging ideas of course which was very important. They had newspaper and so forth. But they began picking up the interest of self advocates, which weren't called self advocates then. They were People First. They started in, I believe Seattle, at one of the institutions. They started to get together and I think they had a staff person helping but they had decided they sad, " We are people first. We don't' want to be called retarded, we wanna do things for ourselves, we can do things for ourselves," and they started a group called People First which spread around the country and was being called other things and still exists mainly in small groups around although they meet annually every year. They have a big to do and they are doing more and more by themselves. Without, well maybe they have one or two people sort of as counselors. But they run their own show and it's wonderful. They are very good.

Lisa: (04:45:43:21) Eleanor why did you continue to advocate for others?

Eleanor: (04:45:53:17) The movement for self-advocacy was very interesting and challenging and I was very happy for them and thrilled because we had been saying you know never say they can't because they can and we didn't always believe it because we didn't always believe it about our own child. Richard will never be able to do so and so and they'd say bite your tongue Eleanor. Because as soon as you really get convinced of that they show you they can. Not always but many times. The movement for self-advocacy became challenging and I got very excited about it and wanted to help them do things and Mark Freedman became a friend of mine and he kept challenging me and pushing me. He was very active much more than I was with the group and he kept saying you're doing too much let them do it they have to do it themselves. I'd say, "well I don't know." They were planning a big meeting or something. He said, "let them do it." And he finally convinced me- it took a little doing but I finally learned yes they can, you know let them be the leader. When we had the three seminars with the states involved, now I ran the whole thing, they hadn't got that far yet but they ran their own workshops and they did very good. They even learned about room service. One fellow at a meeting all of a sudden in comes a big tray with all this stuff on it. For him! He had ordered his breakfast brought there! Room service. He was signing all these things onto his hotel bill. Well okay. It took a little straightening out. They do learn, yes they do.