Chapter Three: Impact of Gina's Disability on Family

06:03:46:20 - 06:05:05:11 Lisa: I can't even imagine how exhausting it was for the family. Maybe you could talk to us a little bit about the impact it had on you and your husband, and on Denise.

Dee: I think it was -- I think part of the reason my husband worked a lot was it was easier to deal that way. It was hard for him to come from one job to another, find people in our house, and even though you would tell people it would be for five minutes, once they got there, it was a half hour, an hour. Every time Denise would want to talk to me, it was like, in a minute, after I talk to the neighbors and we finish this and we finish that. I thought it had -- although obviously we were married 52 years almost, we're still together, I do think it had an incredible impact on our family life. After awhile, I think even though nobody wants to say it, because I think they were afraid if they said it to me I wouldn't take it well, I'm sure that for a lot of them it was like almost too much, even for my other little girl.

06:05:08:08 - 06:09:37:14 Lisa: Dee, you were also talking about some physicians that you met along the way, who were more upfront about the fact perhaps that Gina had a disability. Was there ever a time when people -- whether they were doctors or family members of people in the community, who would encourage you not to care for Gina in your home?

Dee: I think over the years, I'm sure -- this made me a different person. I mean, I really was a very quiet human being. Over the years I became a zealot, and I think a lot of people wouldn't want to say those kind of things to me, even if they felt them. My doctor personally never suggested it. I mean, he did worry sometimes about my other daughter, because he felt that it did impact on her. My family members for the most part, other than my mom and dad, they all lived in different neighborhoods. We scattered over the years, and even though we were still all in Philly, they had their own lives. And sometimes they didn't appreciate Gina. Gina could -- after she got up and became her own self, she could push people a lot. She would crawl up on tables and chairs and pull things off of tables, and a lot of people don't appreciate that kind of stuff. My husband's family were, you know, they were very -- they're cultured people to keep things very nice and very -- everything in order. And Gina wasn't a person who necessarily abided by that. So I think it was hard for all of them, but I think -- I mean, once in awhile my mother in law would say something to me like, I don't know, we never had anybody like -- again, she would say it to me, we never had anybody like her in our family. And I don't think they fully -- my father in law didn't understand her. My father in law was from the old world, he was from Italy. A couple times he did some things that I didn't like at all, and you know, it caused some problems with -- not problems with my husband and myself, because he certainly was on the same page with me, but you know, it was his dad. But he did little things that I thought were mean to her, and you know, you deal with a whole lot of dynamics in families when you have a kid with a disability. Sometimes my nieces and nephews, as they got older and they had children, and they had little children, and Gina would come in and push one of the kids and knock them down and they were like two. They didn't like it, you know, and I think they would have appreciated it if I didn't come anymore to like my sister's house and things like that. But somehow we managed, and I wasn't going anywhere, and neither was she. So people -- everybody loves her now, and she is a really incredible human being, and they love her for that, not for me, but it was a road for all of them to learn how to live and appreciate a person with a disability who's different. Gina has never been able to speak. She could communicate plenty, but she's never been able to speak. But today, my nieces and nephews love her. Their kids love her, their kids' kids love her, and my in-laws love her, and you know, I think that they've come a long way along with us. It was an evolution for all of them, and for all of us, and the interesting thing is, since then, in later years, two of my nieces in my husband's family had kids with disabilities. So it's interesting, and some of his other family members had children with Downs Syndrome and things like that, so if anything, she led the road for the rest of them to come behind, and for people to not even think. One of Vince's cousins' children had a little baby with Downs Syndrome with significant other disabilities, born several years ago, and you never hear her mention that they would even consider anything but that child living in community. So in a way, Gina's been a great teacher for all of them, she really has.

06:09:38:11 - 06:15:33:09 Lisa: Dee, what's the relationship like with your two daughters?

Dee: My oldest daughter is in the medical field, and she loves her sister, but you still see the sibling rivalry sometime, because I'll say how wonderful Gina is, and she'll say, I'm wonderful, things like that. And I say to her, get a life, you're 50, which she wouldn't appreciate me saying on TV or anything like that, but -- and her kids are incredible. One of my grandsons works with me now in the field. The other two work at Vision, where I am all the time, and I don't think they would have it any other way than to see Gina in their life. And actually, when my first grandson was born, the one who works for me, he was about two years old, and he was in the car with us. Of course, to me, having the grandkids and them being healthy and well was like such a gift from god for me, and I used to take him everywhere with me, with Gina, and he said to me one day, in the car, he said, Grandma Mew can talk, right? And I said yeah. And he said, and Grandpa talks too, right? And I said yeah, we were both in the car. And he said, well how come Gina doesn't talk? And I said she doesn't talk because that's the way she came from god. She communicates with you, but she doesn't talk the way you or I do. And then he left it that way, and then about six months later, I took him for a walk, and he started asking me again -- it was the three of us, Gina and Eddy and me, and he said, Gina doesn't talk, right, Grandmom? And I said no, and he said, and is she always going to be that little? And I said yes. And is she always going to be the way she is? And I said yes, and he said, Grandmom, I want you to know that I will always take care of her for you. And he was three years old. So -- and then one other time after that, my daughter and I were in a car, and I was talking to her, and I said, if anything ever happens to me, I want you to take her to where Dr. Barberra's sister is, even though I don't particularly care for ICFs. I wanted to make sure that she'd be somewhere where I felt she would be safe, and my daughter said to me, no, she'll come and live with me. And I said, no she won't come and live with you, she'll live somewhere else. You can look in on her, but she'll live on her own, and she'll live somewhere where she's safe, you just talk to Dr. Barberra about it. And she said -- and she started to cry. And she said, no, she'll live with me. And I said no she won't. And she said, she has to live with me, or she'll never forgive me, which was like an amazing thing. And in the back seat was Eddie. Again, he must have been about four, and she said, and she's my sister, and he said, yeah, and she's my sister, too, which I thought was so cool. But you can see the dynamics in a family, the struggles that you have, in dealing with the present and the future, and what happens to people, and how people struggle with their own feelings and their own emotions and their own fears about what happens. So -- but I think Gina's been great for everybody. She's certainly been an enormous, enormous teacher for me. I probably would have lived a very normal life, and been crying about the dishwasher not working, or the air conditioner, or the last time I got on a vacation, where today, none of those things really mean very much, and actually from the day Gina was born, they didn't really mean much anymore. Because you really do begin to appreciate what is important in life, and I think that's been great. And I can tell you, a lot of the people who worked with Gina, who came into our house, a lot of times when neighbors would come, they'd bring their children with them, and before you know it, they were in high school, they would say I'll come and help. And a lot of them went into helping professions, as a result I think of having worked with Gina. So I think it was really, you know, nice that we did all the things we did, and it really did, you know, I do think we all come here with a mission. That's just kind of my own opinion, and this is going to sound strange, but I always felt, since I was a little girl, I was going to have a child with a disability. And I cannot tell you why, other than that little boy who died in our neighborhood, who lived a couple doors from us, and I always had such an empathy for him and his mom, and then a couple years later, my sister who lived down the bottom of our street, a woman next door to her had twins, and the one boy was born with profound mental retardation, and she left him on that porch, day and night, summer and winter, heat and cold, and it just broke my heart. And I was about 11 years old. And then I read the book by Roy Rogers' wife, Dale Evans. She wrote a book about a child that they had with a disability. And I think it was called Angel Unaware, and I just always knew that I would have a child with a disability. And I don't know if it's because all those other things made me even more aware of how I felt about it, but I remember one time when I was married, and one of our friends had a child with a disability, and she placed them in an institution, and one of my girlfriends called and said, that's exactly what I would do if I had a child. And this was before I had Gina, and I felt myself take a breath, and not respond, because I knew that was something I would never do.

06:15:40:08 - 06:22:13:16 Lisa: I'm thinking right now about the Bill Baldini reports, Suffer the Little Children, which was done in -- excuse me -- 1968, that really showed the community what conditions were like in those situations for people with disabilities. And I'm wondering if you saw that report, if you did, how you reacted to that, and perhaps how that report differed from some other media representations of people with disabilities that you might remember.

Dee: Just to put it in another context, I was a young mom by then. When we had Gina she was unable to go to school, and the only way that you could get services in this city, we were told, is if you went and registered the number to go to Pennhurst. And the only even remote understanding I had of Pennhurst was that little boy who lived next-door to my sister who went away one day and never came back, and after great reluctance, because I knew I might only get services for her if I did do that, I did go and have all the required assessments done and everything, and of course at the end they told us we should place her in Pennhurst, and I said that 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 you want, but she's not going to Pennhurst. And it's not like I knew this place, it's just something that was in my head, that this is not some place she was going to go. But over the years, when I finally was able to get Gina in some type of programs, which were not school, because she was ineligible to go to school, because she was considered to be profoundly retarded and ineligible for those programs, I became a zealot, and so I became quite interested in everything around our field, and when the Pennhurst suit broke, I actually knew -- realized that people would get services, and I went to see some of the attorneys, because I said, you got a whole lot of people on the list, you know, can you make sure that if you break this down, and people come out, that we also help the people who are waiting. And eventually I think what happened was the attorneys worked out an agreement where they dropped everybody on the waiting list out of the suit, but I was so fascinated that I went every day and sat in the federal courthouse and listened, and I fell in love with all the attorneys -- David Furlicher and Tom Gilpole and just their fervor, the fire in them about what was happening. I adored Judge Broderick, I fell in love with him, and just listening to all the stories, and the terrible things that happened to people, if nothing else it made me more resolved that that was nothing that was ever going to happen to anybody that I knew, and especially not Gina. And but because of that, I started getting very involved with things within the ARC, and also there was -- this whole thing broke with Bill Baldini, and it was horrendous to watch on TV. Now I was watching this as well as sitting in the courts, so one of the first nights when it was on, I'm sitting in the living room with my other daughter and Gina, and Larry King gets on and says, you may want to take your kids out of the room right now, because you won't want them to see this segment, it's so horrendous. And just previous to that, we're all sitting there watching the same TV show, the same news show, and one of the (inaudible) fell to his death, and they didn't think that that was horrible for a kid to see, but they thought looking at children with disabilities living the way they were wasn't something he didn't want any child to ever witness. So after that, I had written a couple of articles, and went into the newspapers, and because I was involved with some of the attorneys by then, I was asked to go on a show with Larry King, and at that time, I think it was -- I can't remember the name of the guy who ran Pennhurst, but he was on the show with me, and it was called Behind Locked Doors, I think, the show. But I couldn't help myself, again because I had become such a zealot, that when he came over -- Larry King came over and introduced himself before we started the show, and I said, you know, I think I really need to say something to you before we go on TV, and he said, oh sure. I'm sure he thought I was going to compliment him. And I said, you know, a couple weeks ago, you had the show on, Bill Baldini's show in, I said, and you -- that same night, I said you showed the Valendas, one of them fall to their death at least a half dozen times during that day and evening, and yet you thought it was too appalling for people to let their children watch people with disabilities be treated in such an inhumane way. I said, you know, I really take offense at that. Well of course, needless to say, he wasn't happy with me, and he didn't seem to get the message, but I just couldn't miss the opportunity to say to him what I thought he needed to know, and so he would think about it the next time he did that. So that was kind of that story. I've done a lot of things.

06:22:14:00 - 06:24:50:12 Lisa: I wanted to ask you where Gina's living now.

Dee: Gina still lives at home with her mom and dad. She rules the house, I think. Some days she's the queen, but she's great, and we live around the corner from my other daughter, and my grandsons, and they're a great support to us in times when we need it. My husband's been sick a couple times with cancer, and very sick with cancer, and it's been nice living around the corner so that they could support Gina when I needed to support him. And she has a pretty full life. She -- she started a workshop, but she was never happy in a workshop, because she's just got too much energy and life in her, and we were able to get her into a program where she's able to get out in a community. She does some pretty great stuff. She volunteers at a retreat house for nuns where she has certainly changed their opinion of people with disabilities, and she also works at a home for nuns where they are retired, and I think she's beginning to make a real impact on them. And she also delivers food to the elderly. She helps prepare it and helps deliver it, and she's in the choir. That was kind of a recent thing. She had been in the choir when one of her staff were running the choir, and I didn't mind, and I wasn't quite sure why she was in the choir, but she liked going to -- I guess she liked the music. But when that staff person left, she kind of fell out of grace with the choir, and then recently they were all in town, and Gina saw them and she got right up and went into the choir with the rest of them, and I could tell the staff didn't appreciate it, but Gina got right in the middle of them. And at first I thought, well you know, I guess they don't want her there because she can't really sing -- she can't speak, she can't sing, and then I noticed there was a young woman there with very severe physical disabilities, and all she was doing was rocking to the music. And I thought, you know what, Gina should be in a choir. So Gina's back in the choir, and she just was at the Riversharks yesterday, and they performed at the Riversharks. So she has a really full life, she really does. She does a lot more than her mom and dad do. So she does, she really -- I think she enjoys her life a lot.

06:24:50:00 - 06:28:32:29 Lisa: Well, speaking of her mom and dad, what are some of the best times that you share with Gina?

Dee: You know, recently she's been -- she goes on vacations with us, and the older she gets, the cooler she gets about doing it, and there's two possessions that Gina has, that no one can touch. One of them is her pocketbook, and one of them is her shoes. She takes them everywhere with her in the house, and if she's in the living room, they sit beside her. If she goes to bed, they sit beside her. And I don't know if she's planning on going somewhere or what, but she always has to have them with her. So they were two of the things I was really worried about, the last few times we went on a plane, especially after 9/11, because if you tried to take those things, that's when Gina becomes very adamant about you can't have them. And so you know, we've gotten to this point now where we have to spend a lot of time with her, saying to her, now you know, everybody's got to take their shoes off, everybody has to put their pocketbook on that thing, and if they want to look through it, you have to let them look through it. And we work on it a lot, and she's become quite an avid traveler. You know, she carries her own little bag, she gets her shoes and pocketbook off before I do, and puts them on the thing. They let them go through, and she's -- there's some great times. She goes, well my niece lives in Florida, my one niece now, and we go there frequently, and she likes to do that with us. And just the time she spends with us, when we have affairs, parties. She made a great impact on the legislator in our area, who now works at Temple, but he was a legislator for 20 years, and I think Gina and I were his really first experience dealing with someone who was not going to go away, about issues with people with disabilities. He had worked a lot with people at (Wethaven ?), and the families there who wanted to keep their kids there, and so when I moved into the neighborhood, which is my daughter's neighborhood, and they are friends of my daughters, I went around and knocked on his door, and I took Gina with me, and I said, we live here now and I vote for you, and these are my issues. And at first he was a little, you know, your issues aren't any different than the people over at Woodhaven's, and I said, yes they are, and he said, well Woodhaven's a nice place. I said, then you ought to go and live there a little bit and see how nice it is to live there. Not that it's a bad place, but it isn't community, not real community, and after two or three times going, I said I think if you don't hear my issues, that Gina and I are going to have to stand out some of the polling places with signs, to let people know how you feel about people with disabilities living in community. And we became great friends after that time. And now he's not any more -- he again left the profession as a legislator and he's working down here at Temple, and I love him, and Gina loves him, and I think he loves us, and I think he appreciates the issues that -- and I'm sure it has made a difference for him. But I think there's some of the things that initially as a young parent, I didn't spend a lot of time looking at legislators and things like that, I was too busy just trying to fight for services, you know, and didn't realize how much of an impact they have on services, too. And so I got a lot older, but I think it's important for people with disabilities to be out there and be seen and heard and people getting an opportunity to appreciate who they are.

06:28:36:00 - 06:29:20:07 Lisa: What does Gina mean to you?

Dee: She's been a big part of who I am, and as I said earlier, I think she has been the greatest teacher that I could have ever had in my lifetime. I've had a wonderful family, wonderful relatives and mentors in my life, but nobody has mentored me more than Gina, to appreciate life and to realize the importance of things in life.

06:29:23:16 - 06:29:33:23 Lisa: What is maybe the hardest thing, do you think, about having a child with a disability?

Maybe one of the hardest things in life is certainly to me, worrying about not being here anymore for them. I worry what would happen to Gina if I wasn't here, because it is a lot of time and effort, and forbearance that it takes to stay -- fighting the wars that we fight for people with disabilities takes a lot of energy, and even though I know a lot of people care about her, I don't know that any of them could put the amount of time and effort into this that my husband and I have put into it. So that's a lot to worry about.

06:30:33:00 - 06:31:13:10 Lisa: By contrast, what is one of the more joyful aspects of having a child with a disability?

Dee: I think having a child with a disability, again, teaches you a lot about life and what is important about life. It gives you a perspective that few people have an opportunity to have. I think especially in our society today, that so many people are superficial about life, and they take so much for granted, and I think when you have a child with a disability, you don't take anything for granted anymore, you really don't.

06:31:17:20 - 06:33:39:13 Lisa: You maybe already have done this, so if it feels redundant we can move on, but can you tell me about some of the biggest obstacles that you think Gina's had to overcome in life, either real or perceived?

Dee: I think the biggest obstacles for Gina has been more society than it is her own personal obstacles. I mean, her health issues, her developmental needs that -- I mean, this is a human being who had to struggle to get up off the ground and get on their feet, and then to learn to eat and to chew and to just learn how to take care of their most basic needs. And I think that for many people in society, they don't see the worth of people with disabilities, even today, even though a lot has been done in an effort to try to teach through film and young people out there, self-advocates out there, I think especially because these are financially hard times that something always has to get sacrificed, and I can see it won't be hard to sacrifice people with disabilities. I honestly feel, and I've been saying this for a number of years now, that frankly, I think the pendulum is swinging back towards institutional care for people because of what people see as lofty cost that could be spent in different ways. And I think that's -- they're the obstacles that Gina has had in the past. Getting neighbors to accept her, getting family members to accept her, just being able to get legislators to see what the issues are for people like Gina, and just to try struggling, fighting every day, to get them services that will make their lives better, continue to be an obstacle every day for them.

06:33:42:19 - 06:35:40:28 Lisa: What about Gina makes you smile?

Dee: Just who she is. She's -- I do see her -- her name is Gina, but I always think -- Gina comes from Regina, which is queen, and Gina certainly sees herself as the queen. She's a very self-assured human being. She's a very sweet, gentle human being, and yet she's very assertive, and I have never felt -- a number of times Gina has served in law suits and has stood on lines and rallies, and you know, people say, well do you think Gina wants to do that? Oh yeah, not because Mom is there, Gina wants to do it because she believes in it, and I do believe Gina believes very strongly in her rights, and that she enjoys being a part of that, and it gives me great joy to see that in her, that I know that she is a woman on her own, she really is. I mean, she needs a lot of supports, and they should be there for her, but she has a wonderful personality. She has a great personality. I have never met anybody who doesn't like Gina. And she's a social butterfly. And as I said, like just -- I sent Gina and her staff over to this retreat house, which is a couple blocks from us, and when she first went there, the sisters, who love volunteers, when they knocked on the door and said Gina would like to volunteer here, they said, oh well, she could volunteer outside, and she could pick up the papers and stuff. Well, you know how long it took Gina to get in that house? Not long. And for all of them to fall in love with her? Not long. So I mean, I think it's just creating the opportunities for someone like Gina, and she can break down those barriers on her own, she really can.

06:35:42:00 - 06:36:53:11 Lisa: Would you say that your hopes and dreams now for Gina's future are being realized?

Dee: A lot of them. You know, I would love to see Gina have a real life before something happens to me. Part of me wants that, but I think because I work in the system too, and I know the underbelly of the system, part of me doesn't feel that way. I would rather see her leave here before me, which is a lot -- I mean, I work with a lot of families. Most families feel that way. It's a selfish way to feel, but you feel that that's the way you'll know they'll be safe, and they'll be okay. I've seen so much neglect and abuse, and intolerance, even within our own system. We have lots of good people in our system, and Gina's met many of them, but we also have an underbelly in our system that's very worrisome, and the less money there is, the more worrisome that's going to get. And Gina could be very vulnerable in a situation like that, and that's a great worry for me.

06:36:56:05 - 06:38:42:21 Lisa: Is there something about Gina that you think no one else knows, and --

Dee: That I know?

Lisa: Yeah, something that you think people should know about her.

Dee: I don't -- Gina's a pretty upfront person, and I think most people who get to know her get to see who Gina really is. Although there's many times I feel Gina acts -- she acts -- like if we go somewhere, and someone will say hello to her, she'll kind of like not look at them, but I know that she certainly acknowledges and knows that they're speaking to her. I think Gina -- you know, like I said, I really think Gina is a very outspoken in her own way, even though she doesn't speak words, she is very expressive about who she is, and most people who get -- spend any time for her, for any length of time, would know who she really is. Like Gina -- if you went in a crowd, when Gina goes into church or something, she may moan. You'll see some people right away get a little antsy about, oh gosh, but if you sit there for long, before you know it, she'll take your hand and she'll hold it, and she'll be doing the music with you. And so if you give her a chance, you'll see who the real person is, because she's pretty -- she doesn't leave much to the imagination, I don't think, Gina. She's pretty cool.