Chapter Five: Dee Advocates for Families

07:19:22:00 - 07:20:29:07 Lisa: Dee, you talked about the fact that you narrowly lost a vote at the ARC. How did your advocacy change at that point?

Dee: I certainly had gained a lot of skills around education, and how to help families with kids with disabilities, so needless to say, I already had a bit of a history with families, and the word would spread, and I did most of my advocacy maybe for the next seven or eight years from home. And there was hardly a day that the phone didn't ring, or there wasn't a family asking for help. And I was able to do it and not worried about anything, because I didn't want any pay. I considered it a privilege to help them, and it gave us a great camaraderie amongst ourselves as well, and really helped when some of us wanted to build on other organizations, to be able to reach out to those families, and tell them, you can join this if you want, to have the support of other families.

07:20:30:00 - 07:21:49:12 Lisa: What kinds of issues did families call you about?

Dee: Many of the times, it was the lack of ability to get services, especially things like speech therapy, physical therapy. The schools really would fight them about giving them services. Also, it was sometimes teachers who weren't quite qualified to handle their children's needs. Rarely it would be anything around someone who has been, you know, abused in any way. It was very rare. It was more the lack of services, and in fact, a number of us who lived in the northeast realized that we were all placed in fire families, and that we were all up there in the northeast together, because you can't move outside the city. And we felt we were kind of like stuck, someplace where maybe somewhere else you could have went and gotten more service, but in Philadelphia you weren't going to get it. So we formed an organization, a place in fire families, and we worked really hard for a number of years, helping families to get services, going back and going into the courts with (pillcop ?), places like that, to work on the issues around quality.

07:21:50:20 - 07:27:12:02 Lisa: What do you think was the basis of resistance for teachers or systems, to delivering that quality?

Dee: I think money is always an issue. I think it is a basic issue that they just -- and I do think there was a certain level of resistance, because they really felt that some people with disabilities do not benefit from school, and as a personal story, when Gina was in school, Gina didn't get into school until she was 11.5, and I certainly knew what her rights were, because I made it my business to read everything under the law that would apply to her, under the consent agreement, and when I went to the principal and asked about speech therapy, because Gina didn't speak, they said, well reluctantly they would assess her for that. And I was called in by the speech teacher after, and she told me that Gina really wouldn't benefit from any type of speech therapy, because she didn't have any guttural sounds, she made no real effort to communicate, and she really didn't think it was to the benefit of the other kids in the school for me to be asking for services for my daughter, when she wouldn't benefit from it and they would, and that did I find it the right thing to do, to deprive somebody else, just so Gina could have something she'd never benefit from. And because I had such a sense of righteousness about this, I said give me the pencil, give me the list, I'll take somebody else's name off, because she has the right to that. Over the years, Gina did really -- I finally went out and found somebody who was working at Woodhaven, because they were trying signing, and my mom helped me, because we really didn't have a lot of money. She helped me get a speech teacher that was there to see her privately, and I would take her a couple times a week, and we went about eight weeks, and you wonder then, so you begin to think, you know, maybe this isn't something that Gina can do. And just like that, she started to sign, and you know, today she uses it when she chooses, but she can sign, and she knows about 200 signs, and she has 100 ways that she communicates today. But I just think of how many parents must have sat in that room with a teacher like I did, and because so many people had such a low opinion of people with significant disabilities, that they bought that from the teacher, when she said your kid won't benefit from this. And that was a real tragedy. But even getting the kids in with autism, I mean, we had lots of kids with autism who were also kids with intellectual disabilities as well, and helping those families get into the schools. The teachers were trying. Sometimes it was upper administration that was the hardest people to deal with, and they were holding the line, they were trying to hold the line to keep us back, and you know, I think we had a good little army of families that fought real hard. Pat Armstrong comes to mind. As I told you, her son had significant disabilities. He actually had a disease that he eventually died from, and over the years he regressed terribly from a normal little kid at three, who could speak and run around, to a kid who was on a respirator -- not a respirator, but aspirated all the time, that was blind, couldn't hear anymore, and by the time he was 15, he passed away. But I sat with Pat in many meetings with the school district, because they fought her every inch of the way to give him anything, because to them he was a dying kid, he wasn't worth the trouble. And we would sit in that room, and they would bring in an armload of people to fight her and that kid, and I remember one time, one of the lawyers who usually was there, who fought very hard against us, both there and in the courts, was replaced by another guy temporarily, because he was out on sabbatical, and when we came out of that room for a break, Pat and I stood there, and this young guy who was an attorney came out, and he stood beside us, and he was supposed to be representing the school district, and he put his head up against the wall and closed his eyes and said to us, I don't have the stomach for this. So there were lots of people in the school district that were doing what they were told to do. We fought hard. We had kids who were sitting in schools with lead centers, because they certainly didn't want our kids in the regular public schools. If they were, they were in the basement, or the room down the hall. So the fights -- it wasn't easy to get those kids into school, and it continues to be a struggle to see real inclusion, but where it is, it works, and it's good not only for the kid with a disability, it's good for the other kids in the room with them.

07:27:16:17 - 07:29:06:21 Lisa: At any point you could have focused your advocacy really just on the needs of your daughter. Why did you continue to advocate for other families?

Dee: I advocated for other families because I felt they needed somebody, and I knew my own personal struggle and what it was like, and I felt whatever I had gained in terms of knowledge or skill, I owed it to them to share it with them, and it gave me pleasure to support them, and I was lucky enough to have a mom who would come and sit in my house and make sure that Gina got off that school bus and was okay with my other daughter until I got home, and I spent many days and nights out of my house with other folks, but it was pretty funny when my mom used to be in my house a lot, because she'd be looking after Gina, and I'd be running to, you know, meetings with the school district, people's IEPs, and the phone would ring and it would always be another parent, because the word would just spread and spread and spread, and the first words out of my mother's mouth to them was always, are you a retarded mother? And we got so much joy out of listening -- I mean, at that time, as I said, mental retardation was not a bad word. But it was so funny that when my mom finally passed away, all the moms who knew her said that they were going to send her flowers from all the retarded mothers. And she'd always say to them, you need to get up and fight, you need to get up and see that people get the services they need. And she didn't really have a good grasp on all this, other than what she knew about Gina, but it was enough for her to, too, encourage those families to stand up for what they should have.

07:29:09:00 - 07:29:50:11 07:29:50:23 - 07:30:46:21 Lisa: I wanted to ask you about the time you decided to go back to school.

Dee: When I got into my 40s, I was working with a judge in the federal courts, and my oldest daughter was old enough that I felt that she was able to be more on her own. She was getting ready to go graduate from high school, and Gina was doing pretty well in school, most of the time, and I decided to go back to school, came to Temple, to the school of social work for continuing education for women, and I also went into -- when I left there, I went into geriatrics and worked with people who were aging for about ten years. And I can tell you, they were great stepping stones for me, for what obviously lied ahead for me, that I didn't realize.

07:30:49:00 - 07:36:39:29 Lisa: And so what was lying ahead for you, Dee?

Dee: Well, I was still in geriatrics when a friend of mine, Maureen, told me about something that was happening at Woodhaven, and that there was a court order to move a lot of people out of Woodhaven, under a class action suit called the Danny B. Case. I wasn't aware of the case, but she suggested I might want to think about doing it. And to be honest with you, I never had real experience with families whose kids were in institutions, but I certainly was interested in considering doing the job, and so unbeknownst to me, I was really walking into a hotbox, and but I went in, and I met those families. Initially, most of them were very angry families, because their family members, or people who -- the families there had a great support group between themselves, and when somebody was breaking that line and pushing them out the door, they knew that their own kids were also threatened. So some of the leadership of the family group at Woodhaven -- Ed Fein was the president, I believe, at the time -- I did not know who he was. Here he was a big labor negotiator, and I made it my business, one of the first things to do, was to sit down and meet him. And he also -- I think he was actually labor negotiator for temple, but I met with him down at Temple, and we sat and we talked, and he told me what his concerns were. A lot was that people were being moved out without a lot of consideration where they were going, and he felt some of them were being moved into unsafe homes and unsafe neighborhoods. And I told him I was going to try my best to hear what he had to say as well as others. One of the interesting things as I met all of those families is, once they knew I was a family member myself, it immediately dropped some of those guards down, which was a great opportunity for me to really get to know them and to build relationships. But they always felt immediately -- they asked me first what institution my daughter was in, and I would tell them that she wasn't in an institution, she lived at home, and then they felt so compelled, each and every one of them, to tell me why -- what led to their son and daughter being in an institution, like they needed to explain or somehow justify what had happened. And I tried to explain to them, I didn't think, first of all, that I was certainly not there to judge them, I was only there to help them, but that I certainly could appreciate and understand why in the times when they did what they did, they were forced to, and that I respected them for it. And to be honest with you, again, after geriatrics, this was my next experience that, again, I felt was a step up to where I was going. And I spent about four years helping to move those people out, and then following them once they got out, with their moms and their dads, and I think every one of them was great. Did with mom and dads that were in their 80s, and younger mom and dads, but all of them were very fearful, and when I went and visited some of the places they told me about, I didn't blame them for being afraid, and for wanting to see their sons and daughters if they had to leave, that they'd be somewhere where they felt that they would be okay. For some of them, I felt they probably had family members who were in their 60s and 70s and 80s, they had felt that they had finally placed their sons and daughters someplace where they could rest when they were gone, that they were okay. So they could fold all of that up, and put it in jure, and here comes a lot of folks who think they know everything, and they're going to move them out, because that's really the best thing that could happen to them, which really made them add a question to themselves -- what I did was what I did wrong, and they didn't do anything wrong. And I really -- I fell in love with all of them. I would often go and visit all of them in their houses and have dinner with them, and just sit and chat with them. I really, really liked them a lot, and they were wonderful families. We have a lot to respect in these families, because when I would listen to their stories, I don't know that I would have had the courage to do what they had to do, and I really felt that they -- they walked that journey before us, that was the hardest one of all, to do something where you would place someone you loved far away from you, somewhere, because it was going to hurt the rest of the family if they didn't, or because there was nowhere for them to go and get the help that they needed. And when I met some of the siblings or the parents, they were incredible, they really were, and you know, they -- I mean, Woodhaven certainly was no Pennhurst. I just -- and I was always clear with them, that I believed in community, and they needed to understand that, that I did believe in community, but I didn't disrespect where they were coming from, and that what I had to do was under a court order by a judge, a federal judge. But I would do everything in my power to see whatever happened to them was what they thought they could feel comfortable with, and that their son and daughter would be okay.

07:36:40:29 - 07:40:39:15 Lisa: Dee, did you ever feel conflicted? Did you ever meet a child that you felt wouldn't fare well in the community?

Dee: You know, there was a number of folks that I moved out -- I moved people out of -- this is a great story. I met a woman who lived at Elwin, in media, and you know, she lived in a building, and they had like a great room where everybody would gather, but it wasn't a home. But the minute she saw me come, she realized right away I was there to try to take her out of there, and she was about 75 or 80 years old, and she immediately said to me, I'm not leaving here, so get that straight. And I met about three or four people, especially out at Elwin, who made that clear to me the minute I met them, and these weren't the moms and dads, this is them. And she went on to tell me that her life -- how many times she had been moved from place to place, and she said, you know, I'm 70-some years old. I have no intention of moving again, and this is where I'm going to live out my life. And after visiting her several times, I did write a report about her and several of the other people there that we really needed to respect, that this wasn't about us, or even about a civil rights movement, as much as it was about the person, and that to some degree, we had to respect that if you're 70 years old, if you want to stay where you're at, we have no right to make you leave. So I worked with her for a long time, and she was adamant. I said, let's go out, we'll have lunch, just to get her to move out into the community and seek community. She was very resistant. I'm not leaving, I'm not going. I think she thought if I took her out, I would never bring her back. And I had someone else get -- I talked to the city and asked them if I might bring somebody else in to work with her and talk to her a lot more, because I didn't really have the time. I was moving about 119 people out, so I couldn't spend as much time as she needed to be able to be reassured, and there's a woman called Mary Monahan, and she went out there and she would spend time with Mary, and after about a year, actually on my birthday, Mary called me, and -- oh, before that, they had gotten a house for her, and it was a lovely house. They built this house and they were going to move three people in from Elwin. And so I said to her, let's go to the house, and Mary and I went with her, and she got in the car -- she finally went out to lunch with us a couple times -- and then she finally said, oh okay, I'll go to the house. But when we pulled up at the house, Mary and I got out, she wouldn't come in. So we went and did that a couple of times, and then we thought we didn't want to press her anymore than she wanted to be pressed, and just like that, about two or three weeks later, she called me on my birthday, to wish me a happy birthday, and to tell me she decided to move in. And Mary just recently passed away, and she lived in that house for a good maybe ten, 12 years, and I think her life was enjoyable. But we let her do it on her terms, and I think we owe that respect to anybody with a disability, to -- I believe in community. My daughter's always lived here. I don't think anybody should ever be segregated or live in a state institution, or even a big ICFMR, an immediate care facility. Even small ones, I think people should live real lives, just like we do. But I also respect that when we haven't been on their individual road, and we have to respect that, as well as their families as we move them out, that they need to be heard and listened to, and we need to work with them, not force them.