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Advocating for Kids with Disabilities

Audio

Aired 5/27/09

Having a child with a disability can pose many challenges for families and society. We'll talk with an advocate for children with disabilities about how to incorporate disabled kids into family life as well as after school, social and recreational programs.

This is a rush transcript created by a contractor for KPBS to improve accessibility for the deaf and hard-of-hearing. Please refer to the media file as the formal record of this interview. Opinions expressed by guests during interviews reflect the guest’s individual views and do not necessarily represent those of KPBS staff, members or its sponsors.

MAUREEN CAVANAUGH: Learning that your child has a profound disability is one of the most traumatic events anyone can experience. That's true today, but even more so 50 years ago. In the 1950s and 60s, the options available for families with disabled kids were very limited, in fact families were often urged to send their kids away to special schools and hospitals. One woman who lived through those times has worked to change the perception of and opportunities for disabled children. Gayle Slate lives in Del Mar. She's a marriage and family therapist and founder of Kids Included Together, a nonprofit that trains organizations to include children with disabilities in their after school, social and recreational programs. She tells the story of her own daughter who had cerebral palsy in the book "Dana's Legacy: From Heartbreak to Healing." And Gayle, welcome to the show.

GAYLE SLATE: Thank you very much.

MAUREEN CAVANAUGH: Now, Gayle, you begin your book by telling the story of Dana's birth, backin 1956, and you describe a terrible scenario of medicalmistakes. How is it that you and your husband did finallylearn that your infant daughter had a disability?

GAYLE SLATE: Well, when ourdaughter was six months old, we took her to UCLA. Welived in Los Angeles at the time. We took her to UCLA, under the care of a renowned physician, Doctor MargaretJones, who is since passed on. And she was the expert in cerebral palsyand if anybody was going to help our daughter, DoctorJones was going to be the one. She was at the UCLA intervention program until shewas about two. Unfortunately, we found out from Dr. Jones that she said that Dana would not live a very long life, probably not past puberty and in fact, she would beextremely disabled and would not progress past perhaps sixmonths old. It was really hard for us to take. To hear that. But, actually, in those times, there was no other personavailable, no other place available for us to, to find out if thatwas true or not.

MAUREEN CAVANAUGH: Right. So thedoctor finally told you you, what you obviously knew Danawas having problems, so you've got this final diagnosis fromthe Doctor, at UCLA. How did you and your husband react? Imean, what did you go through when you learned this, thatyour child was disabled?

GAYLE SLATE: Well, I will say thatwhen we first found out, when we saw that she had birthaccidents, that was our first INKLING, but I refused toaccept that and I was going through tremendous denial. Whenthis doctor told us that, I refused to accept that as the final, the final decision. And, we started looking around, butultimately, we faced the fact that she would never improve. And she was a sweet beautiful little child, and my husbandand I, we grew up overnight. We realized that our daughterwould probably never progress, and we finally had to find aplace to keep her, which we, we put her in a place calledHillside House, in Santa Barbara, which still exists today andI'm still in contact with those people.

MAUREEN CAVANAUGH: Now, thatwas something that was really commonly done withdisabled children, back in the ‘40s, '50s, '60s, and what wasthe thinking behind that? Why would a child be removedfrom the home, and placed in a school or facility? Why wasthere no ability to care for these kids?

GAYLE SLATE: Well, the attitudes of people then, towards people with disabilities, was so, it was so terrible, that they didn't, actually, these were not even schools, these were just holding tanks, not Hillside House, but the state in institutions, there were really very few places that were as pleasant and lovely, as Hillside House. There were mostly just holding tanks and institutional kinds of places where they thought, okay, their lives are over. They're not valuable, they cannot be seen as valuable contributing human beings. There was no effort to try and help them past the age of three, when they in fact, intensely gave them physical therapy.

MAUREEN CAVANAUGH: Now, your daughter Dana lived in that facility and she did pass away when she was 14 years old.

GAYLE SLATE: Right. In 1970.

MAUREEN CAVANAUGH: You however, went on, and took that experience, to found an organization called Kids Included Together. Tell us about that organization. And why you decided to form it?

GAYLE SLATE: Okay. Well, first of all, I should fill in the next part. Right after Dana died, I really never was heard saying the word disability. Although we kept visiting Dana, we realized that she was in fact not improving. I was heart sick. Then I went back to school to become a therapist, to help families, because I wanted to do something. I think I really needed to heal myself as well. And along the way, when we moved to San Diego, there was a bequest left by a woman who had polio. She wanted to donate money for children with disabilities. And in my period of time of working as a family therapist, I used to hear from other families, that why can't their child be included with all the other kids? Why do they have to be in their own camp. There's nothing available for them. Why are they treated like second class citizens. So when this money became available, we established a, a program, a pilot project, at the Lawrence Family Jewish Community Center in La Jolla. They always wanted to have kids with disabilities in their program. And they did such a miraculous wonderful job, and by the way, they're still including kids, that I felt this needed to go beyond. That this was, why couldn't this be in United States. And so my husband and I founded Kids Included Together in 1997 as a result of the successful program at the JCC.

MAUREEN CAVANAUGH: I'm speaking with Gayle Slate. She's a marriage and family therapist, and founder of Kids Included Together. And we're talking about her life story, which is in the book, Dana's legacy, from heart break to healing. Gayle, I want to ask you, it used to be thought that kids with disabilities couldn't be included in regular activities that include all sorts of kids, so how, is it just simply a shift of mind set? Or are there actual things that need to be done so that disabled kids can be included?

GAYLE SLATE: Well, both are correct. It is a shift of the mind set. It's getting society to begin to see that people with disabilities, kids with disabilities are kids first. And they like all the same thing and they have all the same likes that all children have. People with disabilities are, can absolutely do things. They can, they can accomplish a lot. But up until now, they've never known how to do this. So, CIT trained youth organizations how to include children with disabilities. But it also trains the entire organization. It doesn't just train just the children in the organization. It really teaches people how to see people with disabilities differently.

MAUREEN CAVANAUGH: And Gayle, how well would you assess schools are doing today? In accommodating kids with disabilities?

GAYLE SLATE: Oh, that's a whole other subject. I wish I could say that they were doing a good job. Unfortunately, and this is been going on for years and years, the schools have to include kids but they really have never been trained do it. And too often, they are not supplying the correct services and getting, and fulfilling the rights of these kids. So, the paernts have to really go to bat to get the services needed for their children. Whether they're, I mean, very often the kids with disabilities are in the classroom, but they're taken out to the resource centers and then they come back. But it's not been a very positive experience. There's not enough time it seems with teachers, to take that time to spend with the kids, to help them realize how connected the children are, and how they can be. There's still a tremendous separation between kids with and without disabilities.

MAUREEN CAVANAUGH: Gayle, we have a caller on the line named Valerie. She's calling from Carlsbad and she'd like to talk to us. Valerie, good morning.

MAUREEN CAVANAUGH: Valerie.

VALERIE: Yes, I'm here? Hi, good morning.

VALERIE: Hi. Is this Maureen?

MAUREEN CAVANAUGH: Yes, it is. Hi, I'm wondering, what comment that you have.

VALERIE: I wanted to let you know that I was a patient of Dr. Margaret Jones. In 19, in the 1960s, and I'm an adult with a, with cerebral palsy. Your guest didn't mention the diagnosis of her daughter, but I assume it was something like CP, because that's what Dr. Jones specialized in. And, I wanted to talk a little bit about what it's like being a child with a disability, of parents who didn't know what to do about it.

MAUREEN CAVANAUGH: Yes, please, share your story.

VALERIE: Okay. My mother and father didn't know anything at all about neurological or Pediatric impairments until I was diagnosed at about the age of 14 months. And the doctor who diagnosed me said that it was a punishment from God and that I would just have to be dealt with. I was lucky to be mainstreamed. My impairments are relatively mild for people with cerebral palsy. But when I was about 9 or ten I was taken to ucht UCLA to Dr. Jones's clinic and she did a few tests to see the level of my limits, and she was very wonderful and sweet to all of us. She didn't have any recommendations, but she encouraged me to do the best that I could. But my mother, as I grew up, no one in my family was able to talk about my being disabled. And the problems that I wanted to say, is that, with people like me, it's a good idea to talk about it. And to bring it out in the open.

MAUREEN CAVANAUGH: It's Valarie. Thank you so much for sharing that and I want to get Gayle's reaction.

GAYLE SLATE: She's absolutely right. In fact, the thing that we didn't yet bring up, is, how do we go on on from here, regarding people with disabilities? You know, people with disabilities can talk, they can react, they have feelings and I think this is so important, and I'm so glad that Valarie came on on and said this, because that's the part that's so sorely neglected and I think it takes people like Valarie to become an advocate to help people realize that they have feelings, that they are in fact just as talented as everybody else. But they've got to be given a chance. And when you see little kids, staring at a child in a wheelchair, what do parents do, they say, don't stare, don't pay attention. Just the opposite. I think you have to engage them, you have to talk to people, you have to really make an effort. I think that people are embarrassed. They don't quite know how to handle the situation with a child.

MAUREEN CAVANAUGH: Let's take another caller. There's somebody else who wants to talk to you Gayle. There's Julie in Carmel Valley.

JULIE: Good morning.

MAUREEN CAVANAUGH: How can we help you.

JULIE: I wanted to call and thank Gayle for her book. It's a wonderful book it's given a lot of us in sight and courage and dealing with disabilities.

MAUREEN CAVANAUGH: What kind of disability have you had to deal with, Julie?

JULIE: Well, I have a daughter with a developmental delayed disability that she was born with. And she's doing really great, but it's really through Gayle's work and her insights that have given us, you know, the information and the resources to get our kids connected in the community.

MAUREEN CAVANAUGH: Thank you, for that call. Julie, you must be very gratified to hear that, Gayle.

GAYLE SLATE: I am, I know Julie. She's in one of my parent groups so I appreciate that Julie. Thank you so much.

MAUREEN CAVANAUGH: I wonder, I think that most people think that the Americans with Disabilities Act really really changed things in America, in the way that people with disabilities are treated. Do you think that's true?

GAYLE SLATE: I think that's a feel good act. I think that's, as far as it goes. I think the ones who are enforcing it who are making it be enforced are people who are the advocats for themselves. They are absolutely going to bat, and, if they are not building the proper buildings with the correct accessibility lanes, I think the organizations that have people with disabilities are going to bat for them. But I think for the most part, there's no money behind the act. And that's one of the reasons that I started CIT, because I felt I was going to put the money behind the law. It's just, I felt that let's do something about it. Let's not just talk about it.

MAUREEN CAVANAUGH: And I want to ask you, finally, you write very eloquenltly in your book about what able bodied people should remember when they're dealing with disabled people. Perhaps you can tell us a little bit about that.

GAYLE SLATE: Well, as I had said before, that able bodied people are, they don't quite know what to do or on how to handle situation. I think they've got to give people a chance, and see these people as talented and able to do something, they may be in a limited way, but in fact, abled. I just would like to give you a quick example

MAUREEN CAVANAUGH: Sure.

GAYLE SLATE: Of Erin, if I have a minute.

MAUREEN CAVANAUGH: Yes.

GAYLE SLATE: Erin just graduated Cal State San Marcos. And she was, refused entrance to the University. Just based on the fact that she had cerebral palsy and she was in a wheelchair. And her mother had taught her not to accept no for an answer. Erin, after finally deciding she wanted to go to Cal State San Marcos, she would not accept no for an answer. And after going to first to, junior college, she then went on and graduated and participated, as person equal to everybody else. Nobody would have believed that she could do this. But because she was the one that stood up for this, she could do it. And now she wants to go onto graduate school. And so we have to listen to people and not judge them by their disability. I think that my favorite expression is, don't let disability loom larger than the person. See the person inside, give them a chance. Once the society changes, and we can't speak for the disabled person. We cannot speak and say, what it's like to be inside their body. You know, how can we say they're not happy, they must feel terrible. We don't know that.

MAUREEN CAVANAUGH: Right. Gayle, Gayle Slate is the author of the book, Dana's Legacy, from heart break to healing. She's a marriage and family therapist. But more precisely, for this conversation, she is the founder of CIT. Kids Included Together. It's a nonprofit that trains organizations to include children with disabilities. Gayle, thank you you so much for talking with us today.

GAYLE SLATE: Thank you very much.

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