Chapter Four: Dee's Early Advocacy

06:38:47:20 - 06:39:12:07 06:39:12:20 - 06:41:39:09 I'm wondering if you can tell me when you first started to connect with the parents of other children with disabilities.

Dee: When Gina was about three and a half, I started reaching out. When we stopped doing the (inaudible) patterning, I knew that she still needed to continue to have stimulation and opportunity to be with other children and to learn, so I heard about a program at (Kencrest ?), and at that time, families could take their children there, and they did -- they were willing to take kids who were not completely toiled trained, because that was always a big issue. And they also were willing to take kids who were a little hyperactive and things like that. So the only downside was that it was only a couple days a week, and it was half a day, and you had to get them there and pick them up, and you had to pay. And we didn't really have a lot of money, but again, Vince continued to work a second job, to help pay for some of the stuff as well, and Gina started her first experience there at Kencrest. And it was a very nice experience for her. All little kids, all little guys, all kinds of guys and girls, and they accepted her for who she was, which didn't always happen for Gina in her life. So that was a really nice experience for us. But over a couple of years, it became a little difficult for me, running there a couple times a week, also having my other daughter in school. And the financial cost that was involved, it became a little difficult for us to continue after awhile. And then I had heard about the ARC Park it was called, at that point here in Philadelphia, Philadelphia Association for Retarded Citizens, and that they had a full-day program, and you didn't have to pay. So I did enroll her there, and Gina started to go to school there.

06:41:33:11 - 06:42:44:25 Lisa: And Dee, when Gina started to go to school, did you begin to connect with other parents?

Dee: I did, and I found that a very rewarding experience, because I think when you're a young mom with a kid with a disability, you really think you're all by yourself. And in fact, Gina actually got into a little program at a Catholic school, for a half a day a week, on a Saturday. That was really my first experience, and you couldn't leave, because it was only for about two hours. It wasn't worth -- and usually anywhere Gina had to go, it was a lot of travel involved, and I had to learn how to drive to do these things, and we would sit together as moms, and we found great camaraderie with each other, and we would laugh together and cry together and talk about different things that happened together, and you realize you're not alone anymore. And that many people are having the same experiences you are, but it's nice to be able to share that with someone else. It became like a support group, that very first little group we were involved with.

06:42:46:03 - 06:43:42:00 Lisa: You've talked about this (inaudible) Saturday program, and going to Kencrest as well. But back in those early days, did you ever think that it would be possible for Gina to go to school like a typical child?

Dee: Well, they would have the psychologist come once a year and evaluate all the kids, and I would try desperately to teach Gina to build blocks, because you had to be able to build blocks. She wasn't completely toilet trained, and she still couldn't chew or feed herself. So there were lots of issues, but I kept hoping, but every year they would say she was uneducable and that she was not eligible to go to school. And you know you kept trying very year, but Gina was about 11.5 before she finally got in school, and that was only because we had the consent to create that came out of the right to education.

06:43:44:20 - 06:44:58:28 Lisa: So when you first became involved with the ARC, in the early '70s, which was around the time of the Park Consent Decree, was a pretty remarkable time. The Park Consent Decree was probably the first major piece of legislation that the ARC had moved forward. It opened up schools for kids with disabilities. Although it was a decree that opened schools, it was probably very widely acknowledged that it was really the first step, the Park Consent Decree, into closing institutions. So as a member of the ARC at that time, were you on board with that idea?

06:44:58:28 - 06:47:09:22 Lisa: When you were a young parent getting involved with the ARC for the first time, again a very exciting time, the Park Consent Decree had just been -- or was in the process of -- coming to fruition, but it was also considered to be a first step toward closing institutions, part of a longer strategy that the ARC had. And did you approve of the direction that the ARC was taking?

Dee: Oh, absolutely. I think it was important for the ARC to move forward and to get our kids into school, to break down those doors and to open the doors of the institution and return people to community. And even as a young mom, I saw the importance of that, because I wanted Gina to always be in the community, and I wanted her to be in school like her sister, and you know, to have a chance to learn, whatever that learning meant for her, that she had that opportunity. So I was very much for it, and in fact, I -- when I became active in the ARC, I was the first right to education person that the ARC used to begin to establish relationships with families and try to reach out to talk to families about right to education and it was important to get them in school. And I think there was where some of my reluctance was, is I went and looked at a lot of the programs, even in terms of placing Gina. For someone like Gina, they really weren't still the kind of classes that Gina needed, nor did the teachers have the skills they needed to teach someone with significant disabilities. And it was a struggle for the teachers, but it was a struggle for the kids that were going in there, too. It was exciting, but kind of scary times, because you were stepping out into new ground, and with people who to some degree didn't even really want you there in the beginning, but also once they had the kids there, they didn't know really what to do with some of -- especially the kids with significant disabilities like Gina.

06:47:10:14 - 06:49:57:01 Lisa: Dee, you mentioned that it was a scary time, and I know that throughout the PARC Consent Decree, and subsequent legislative action, parents were -- many parents were afraid to sue the state for the right to education. I know the divisions ran so deep that one of the ARC presidents, was it Eleanor Gephart, resigned rather than go forward with PARC And I'm just wondering, as you were out advocating for families, if you got a sense of that fear and what you did to assuage that fear.

Dee: I don't think families were -- I didn't run into families that were afraid of the opportunity. I think they were perhaps concerned about the ability of folks being able to deal with things, but many of us -- they were very exciting times. First under the right to education, and then when we got public (inaudible) 94142, the school district didn't know what to do with us, either. It wasn't just what to do with our kids, it was they didn't know what to do with us, either, and some of us were -- I guess I'll speak for myself -- were zealots, and once we got in that door and we knew we had the right, we were going to fight to make that -- to bring it to fruition for them to have a real education in those programs. So a lot of the families were thirsty first to reach out to other families, and to know what to do. I wrote several pamphlets to help people understand what to do when you got in the school, and how to exercise those rights, and I have met so many wonderful people in my life, just because of my daughter, again, and many of them are families. I have the greatest respect for families of kids with disabilities, I really do, and many of them were willing to take a lot of chances with me, because I did become kind of like the advocate for many people, and I often would get them to do things that at first they were a little reluctant to do. But the school district didn't know what to do with us, and we did some pretty interesting things, to try to convince them that we weren't going to go away, and that they were going to have to fully exercise people's rights and see that they got the opportunities they needed, and the supports and services they needed. It was a good time. I kind of enjoyed it.

06:49:57:25 - 06:52:51:21 Lisa: you mentioned that you had some co-zealots in this fight, and I wondered if you could tell me, maybe, about some of those folks.

Dee: Well, Leona Fialkowski was not only a zealot but my mentor, and she's one of the first moms that -- I read an article in the paper about her, and how she had started a little program for the first time for people with significant disabilities to have a classroom opportunity in a public school. And I don't know how I found her phone number. I guess I looked in the phone book and I called her, and before you know it, I mean, Leona was several years older than me, but she instilled in me that you have to get up, and you got to fight, and you got to join forces with other families and you have to see that these kids get into school, and that they get services. So Leona certainly was probably my strongest mentor, but then some of my peers, Pat Armstrong, who I happened to meet because her son had a tragic experience in school, and someone told her to contact me, because I was the advocate, and Pat and I became great friends. And her son who -- Gary Armstrong, who has passed away a number of years ago now, but served as the plaintiff in one of the cases, because we got very involved with some of the civil rights attorneys. He served as the plaintiff to bring about extended school year programs, that now are across the entire country, and Maureen Devaney, who I -- her and I became great friends in school, because our kids all went to the same schools. You really have your own little culture after awhile, because you all show up in the same places, you know. And certainly Maureen and I became great friends and have traveled this road a long way together at this point, and I hope we've made some differences for people. We're quite different, but we're quite alike, too, in many ways. Our kids are very great friends, too. Her daughter Colleen and Gina are great friends. And I think of Nancy Greenstein, Eleanor Elkin, who to me is -- I told you I want to be just like her when I grow up. I tell her that all the time. I don't think I have more respect for anybody in the world than her. She's the Grand Dame, and she has certainly made an incredible difference in the world of people with disabilities. And just to be able to be in their shadow a little bit has meant a lot for me.

06:52:52:21 - 06:53:12:15 Lisa: Eleanor is the Grand Dame, isn't she?

Dee: She is the Grand Dame. Just walk in a room with her anywhere, and you'll find out she's the Grand Dame. Everybody adores her.

06:53:14:20 - 06:55:33:07 Lisa: You said Gina was 11 when she started school, and I wonder if you could tell me a little bit about what her first day of school was like.

Dee: Gina initially went to a school called Torresdale School, which is -- it was a lovely little school. It was segregated at that time, because we still weren't talking about inclusion, but we were lucky to get in the doors of somewhere, even if it was with other people with disabilities who were considered educable at the time. So Gina went to a little school called Torresdale, and it was on a nice piece of ground, and in the far northeast, and she seemed to enjoy going to school, but it didn't take long before it was clear to me that people didn't have a clue what to do with someone like her. And I went in the school and found them tying her up, and trying -- well, it wasn't positive approaches, it was behavior modification on her, with putting eye guards on her face so she couldn't see. And a lot of it was because Gina was so hyperactive, they just didn't know how to get her to focus. It wasn't that these teachers were bad people, they just didn't know what to do with them. And in fairness to them, we owed it to them to help them to learn, and I think we threw everybody in there, you know, and assumed because you have the right, that that brings everything else with it, and it doesn't necessarily. And so many of us had a hard time with our kids being in school for awhile, trying to work with the teachers and helping them understand our kids, and finally, Gina served as one of the plaintiffs to go back to court, to figure out what was quality education. Was what Gina getting quality education? And we brought a lawsuit into the federal courts, again, in an effort to help the teachers to try to establish -- the teachers really needed to have additional education to try to work with people with significant disabilities.

06:55:33:16 - 07:01:14:07 Lisa: And what was the result of that lawsuit?

Dee: Life skills programs, the (inaudible) across Pennsylvania, where people with disabilities -- somebody's not necessarily trying to teach them math or how to read a book, but how to get their clothes on, and how to take care of their hygiene, and how to maybe make a sandwich, and how to go out in the community and have activities, whether it's shopping or -- some of it, after awhile, got -- I thought they took a good thing, and they meant well, but everybody did the same thing. Wherever you went to school, everybody went to the Laundromat, and I would say to the lawyers, my daughter doesn't need to go to a Laundromat, because that's not how we live. We have a washer and dryer in our house. If anything, she's not going to put coins in there, so why do we want to teach her to put coins in a Laundromat? And then we had to bring in more people, like Lou Brown, who is another guru that I just adore, who sees things pretty simply for people and their families, and teach people that it's more about the person, it's not taking a model and thinking everybody belongs in this one model about how you teach people with significant disabilities. It was a long road, and we were in court several years, and actually I served as a chairperson on the committee for Judge Becker, who was in charge of that particular case in court. But you know, the unions were fighting you. We had some interesting experiences. One -- during these court hearings they decided that teachers needed to learn, so that they were going to give our kids off for a week while the teachers learned, because teachers didn't want to go to school -- or Saturday or Sunday during the evening. So the outcome was going to be our kids sat home when everybody else's kid in the school district was going to school. So Pat Armstrong who lived up the street from me decided that that wasn't going to happen to our kids. And I talked to the lawyers, and I said to them, this isn't right, why are our kids being penalized? Because the teachers don't have the skills they need. Why do our kids have to sit home? Well, this is the agreement we came to, and I thought, well I'm just not paying any attention to them. And Pat and I packed up the kids' lunches, and we knew that it was really our kids' rights to go to the school around the corner, so there was a tiny little school around the corner from our house, and we packed them up. Gary was in a wheelchair, and I took Gina by the hand and we took them down and we went down to the school, and went in with the wheelchair and Gina, and you know, we went into the principal's office, and they said, can we help you? And we said, yeah, we're here for our children's day of education. And they looked at us like they didn't know what we were talking about, and they said, well this isn't the school they go to, and I said, not ordinarily, but this is the school they're going to go to today. And we did some really outrageous things, but you know, it was important to make those differences, because people really still didn't get it. Sometimes even our lawyers didn't get it. So we went in there, and she said, just sit there, go out and sit on the bench, the principal's bench, and we'll go get the principal, and the principal, this cute little guy, comes running down the hall. And he says, oh hi, I think you're in the wrong school. And I said, no, I'm not in the wrong school. I live around the corner, and this is my neighborhood school, and my daughter should be able to go to school here. She just happens to have a disability, but she can go to school here today because she's not going to her regular school, because they closed it for the day. And I pay the same taxes that these other children's parents pay, and she's going to school here for the day. And he goes, please, don't leave these children here with me. And he said, let me go call somebody. And he went out and he called the lawyers for the school district. And he came back in about a half hour, and he said, don't leave, but don't leave them here, either. And we said, okay, we'll wait, and he came back in about another half hour, and he said, there will be two teachers here, and we're setting up two classrooms, and they'll go to school here for the week. So I walk home, and as I'm coming up my front steps, the phone is ringing, and I know it's going to be the lawyers. One of our public interest law centers, who I -- I love these guys, but they didn't know what to do with me sometimes, either, and he gets on the phone and he -- what the heck did you do? And I'm using better language than he did. And I said, I'm exercising my kid's civil rights, something you should have done for her. And he said, okay, just don't tell anybody else. So our kids went to school that week, and I think it was important for them to learn that you don't make settlement agreements either, or even short-term compromises, without including the people that it's about. And I think even the lawyers and the ARCs and everything else over the years had to really learn that from the people and their families, because I think for a very long time, it's always been about the professionals, and not about the people, the true people, the true stakeholders in this. And I think it still continues to be a bit of a struggle. But the more the self-advocates are up there and in people's faces, the more you're going to see less of that. And in the early years, the moms had to do it, and the dads.

DAY TWO

07:01:50:05 - 07:02:33:09 Lisa: my name is Lisa Sonneborn, and we're here at Temple University interviewing Dee Coccia on Friday, July 8, 2011. Also present is Lindsey Martin, our videographer, and Dee, do we have your permission to conduct our interview?

Dee: Yes, you do.

07:02:34:00 - 07:03:35:08 Lisa: When you joined the ARC, and again you joined the ARC at a time that was so fascinating in its history, when they were just about to make some significant legislative change with the PARC Consent Decree. So I wanted to ask you, who were the leaders of the ARC at that time, and what did they mean to you as a young parent, or how did they impress you as a young parent?

Dee: Some of the leaders in the ARC at that time were folks like Edith Taylor, who was a mom herself, but she was the executive director of the Philadelphia ARC, and at the state level, one of the people I remember is Elsie Schmidt, who is also a mom, and she was, I believe, president of the state ARC. And they were the people that I remember the most. After I got involved -- as a young mom, I didn't have much time to give, going to ARC meetings and things like that, so until I actually became an ARC board member, I didn't really get to meet a lot of the other people.

07:03:36:14 - 07:04:38:16 Lisa: Did you ever hear folks like Jim Wilson or Dennis Hagerty talk to parents about the types of changes that they wanted to see through the Park Consent Decree, and the changes they wanted, both in education and in institutionalization?

Dee: I was not able to -- in terms of talking to folks and listening to them, Jim was on the board with me when I did join the board. Dennis was a little more far removed, because he was more involved in litigation stuff. One of the first persons I remember as a young mom meeting was Tom Gilhole, and he was quite an inspirer, and quite able to encourage young families to follow him down that road with him, as we began to open the doors of the school districts. So he is really the person who sticks out most in my mind, and that I still hold a very dear relationship with, all these years.

07:04:39:10 - 07:05:06:03 Lisa: Were you in the courtroom, Dee, during the PARC hearings?

Dee: More for the Pennhurst suit. I spent a lot of time in the courts with the Pennhurst suit. I did not spend a lot of time in the courts -- in fact, I was not really aware that a lot of that was going on at the time. And again, when you're a struggling young family and you're dealing with the day-to-day things, you don't always get a chance to do all of that.

07:05:07:10 - 07:07:23:03 Lisa: You mentioned Tom Gilhool as being an inspiration in your career. I'm wondering if you can tell us a little bit about what it was like working with Tom.

Dee: Tom was really a very interesting person. He was very charismatic. He often reminded me of the Kennedys, and he was really able very much like John Kennedy to be able, again as I said, inspire you to follow what he was about to do. I mean, it was quite scary for a lot of families to think about leaving the confines of small daycare centers, even if they had adult children, to begin to move out into the school districts and into schools that they had little or no conception of, and they weren't usually in your neighborhood. So it was really kind of, you know, anxiety-ridden. But Tom clearly inspired folks like me, and Leona Fiokowski, to follow him, and to also work with him many issues. We worked with inclusion later on, and getting the kids out of segregated schools. We were glad to be in a school at all at first, but we then wanted very much to move out into inclusive opportunities for the kids. So Tom was inspiring. We spent many a day and night together, both here and in Washington, D.C., and Boston, and his ability to envision where we needed to go was awesome, and he was involved in the Pennhurst suit as well. So I mean, I had also seen him in the Pennhurst suit, but was very excited when we found out our kids can finally get an opportunity to leave those daycare centers, and really go to school.

07:07:26:26 - 07:11:07:05 Lisa: In the '70s, you and other parents joined forces, I believe, to push schools to do away with the segregated classes, and to have more inclusive classes, I believe. How did teachers react to that?

Dee: I think at first, they were afraid, because they didn't have the skills that are really required for really kids -- I mean, a lot of our kids who ended up going into the school, that last group of individuals who went in the schools were people with more significant disabilities, and although they were -- they did have classrooms for kids with mild retardation at that time, and kids who were considered trainable. I mean, some of the words that they used for folks at that time, thank god they're not here anymore, but they were used to dealing with kids who had, you know, a certain ability to understand, to respond, and to communicate with them. So when they were then confronted with children who often couldn't speak, often had a lot to learn yet, and to be able to be able to take care of themselves, they didn't know what to do. They didn't know a curriculum, they didn't have that in school, and so they struggled, they really did struggle. Some of them were, again, all-inspiring, because they figured it out on their own, but many struggled for quite a few years, until we finally did go back with Tom Gilhole, the public interest law center, and we did fight for what we considered, what was quality education for people. And that took a few years. We were in the federal courts for a few years, and we tried to work with the school district, and the teachers unions, because they were involved, and we were able to get some education opportunities for teachers, curriculum built into some programs, I guess graduate programs, but you know, many years ago, when I was involved in educational stuff, of course I was a fireball, and you know, once you told me as a parent that my child had a right, you couldn't stop me. But I remember being with someone who was working with the school district. In fact, he was considered to be the right to ed person in the school district. His name was Wynn Tillery. And we were out somewhere together, and of course I was always fussing at him for what wasn't, and what needed to happen, and he said to me one day, you know Dee, this is not about revolution, this is about evolution. And I was quite -- I was quite offended by that at the time, but now that I've grown a lot wiser and have been through many, many battles, I realize that what happened in the civil rights movement, for many other people, is also what we see in the disability movement, and it is evolutionary. You can pass all the rules and regulations and laws in the world, but there's still a process that society has to catch up with, in order for it to really work, whether it's a school teacher, or your neighbor, or anyone else, and that that evolution is truly there, and even if we do watch the civil rights movement, we can see that. Doesn't happen overnight.

07:11:08:00 - 07:12:02:14 Lisa: Is this a civil rights movement, do you think?

Dee: Absolutely, absolutely. It's the last bastion of the civil rights movement. Sometimes, in many ways, it's still a very hard fight, because a lot of folks with disabilities are voiceless and powerless, not that many people in the civil rights movement weren't, either -- they were, but people joined forces with them. But their struggles are their struggles, and I think it's important for us to realize, as we look at people in the civil rights movement, as we move up behind them, this is a battle to me. I must have been a general in another life, but to me this is a battle, and you keep moving up the forces, one by one, and this is the very last bastion. Doesn't mean we're going to win it tomorrow, doesn't mean the civil rights movement will win it tomorrow, but we have to keep moving forward.

07:12:04:10 - 07:12:27:11 07:12:32:00 - 07:14:16:17 Lisa: Dee, you became a member of the board, and of the executive board. The ARC was providing services to people, I believe, with disabilities in the late '70s, including sheltered workshops. As a member of the ARC or as a parent, were you happy with that direction?

Dee: At that juncture, I think that we weren't unhappy with it, because at least people had, especially as they became adults, when you moved out of the school districts, you fell over a cliff. There was nothing for folks -- there weren't supports, there weren't services, there weren't funding. So if you were lucky enough to get a placement, even in a workshop, at least it gave people something to do with their lives each day, rather than sitting home. I think of someone like Gina, who is very high-energy person. All these years she had the right to go to school. She knew every morning she got up, and she ran out and got on that school bus, and she had a day full of something to do with her life. And when she turned 21, that kind of stopped overnight. And in fact, we have a number of family members that we've interfaced with who, when their kids did leave school and there was nothing for them, a couple of them did have mental breakdowns, because going back to doing nothing, and sitting in a room and just watching the TV and feeling that you had no importance, was very hard for them.

07:14:19:25 - 07:19:10:00 Lisa: You had an opportunity, as a member of the executive board, to influence the direction of the ARC.

Dee: You know, again, Gina changed my life, as I said early on, and experiencing, I don't know, the devaluation of our children, really did make me a zealot, and as I entered the school district I became -- and felt that we had some rights, then I really felt like I had a platform to stand on. But I felt within the ARC's -- they were still struggling, too. I guess sometimes you create a monster when you give people rights, because then they're going to fight for them. And for some of the ARCs, I think, again, it was a struggle for them to move away from professional boards, and begin to accept families on the board, and then for some of us who felt very strongly self-advocates should be on the boards, even all the way back then, it was really hard for them to accept. So after serving on the board several years, and trying very desperately to voice those concerns and the need to see people with disabilities and family members play more of a major role, and seeing the need for -- I did feel after our kids got into school, they needed advocacy. Just walking through that door didn't mean anything, and for some of them, they couldn't get any services after they got in there. And so families didn't know how to fight those battles. They knew they had a right to go in that door, but they needed someone to support them after they got there. And actually, within the ARC, they did make me the head of the rights education for Philadelphia, and that gave me an opportunity to reach out to families and eventually to force the task force, which was also somewhere where 51 percent of the people in there should have been people with disabilities and family members, and there was no one, except Edith Teror, who was the executive director of the ARC. And so genteel played a role, and because of my extreme advocacy within the organization itself, he gave me some work to do, I guess to keep me busy, but he gave me an opportunity to go on that task force and turn it around. But the ARC, for me, who had decided I do have rights, and that people should be listening to what we had to say, after about three or four years of a very strong battle with some of the board members, I did attempt to take it over, and it was quite an interesting effort. And the state ARC was behind me, but in the end, we didn't win, because we didn't have the powers that the ARC itself had at that point. And again, I don't blame any of them. I don't blame myself. I wouldn't do anything different today than I did then. In fact, I'm very proud of what I did. So I created an additional reputation for myself, but they weren't ready at that time to accept more people with disabilities and family members on the board, and to deal with some of the issues that I felt. If you're going to raise money, you use it to support people and not just to justify your existence. And as I said, it turned into such a battle that there was an election, and it didn't -- it was an extremely interesting election, and as I said, we didn't win in the end, but we had a board where at the Philadelphia ARC when I was there, you were lucky if ten people ever came to an annual meeting where there was an election. When I ran a slate against the -- and I was on the original slate, but I ran an additional slate where I was going to take over the presidency, and I had a whole slate of people who were willing to go with me. And we didn't win, but for the first time ever, there were over 500 people who showed up for that election when there used to be ten. So there was enough -- we lost by a small amount, but we lost, and that's okay. So I just took myself off and went in a different direction, and started another organization with folks who were with me on that ballot.