Attitudes Toward The Intellectually Disabled
LYNN NEARY, host:
This is TALK OF THE NATION. I'm Lynn Neary in Washington.
Eunice Kennedy Shriver died today. As the founder of the Special Olympics, Shriver challenged the way we view people with intellectual disabilities and the way they view themselves. No longer are they seen a merely as dependent and childlike, isolated from the rest of society. Many live independently in mainstream society, holding down jobs and forming life-long relationships. But just how much have attitudes really changed?
Later in the hour: the economist who pushed the cash for clunkers program. How did it affect you?
But first: changing attitudes on intellectual disabilities. If you or a family member has an intellectual disability, tell us your story. Our number here in Washington is 800-989-8255. Our email address is email@example.com. And you can join the conversation at our Web site. Go to npr.org and click on TALK OF THE NATION.
We begin with Ann Turnbull. She is cofounder, co-director and distinguished professor at the Beach Center on Disability at the University of Kansas, and she joins us from member station KANU in Lawrence, Kansas. Welcome to the program, Ann.
Professor ANN TURNBULL (Beach Center on Disability, University of Kansas): Thank you, Lynn.
NEARY: Now, I know you had a son with Down Syndrome and that he recently passed away. Is that correct?
Prof. TURNBULL: Lynn, yes I did have a son. He did not have Down Syndrome, but he did have an intellectual disability. And very sadly, he died in January at the age of 41.
NEARY: At the age of 41. I'm so sorry about that. And I wonder what kinds of changes you saw in attitudes towards him and towards others with intellectual disabilities over the course of the his lifetime.
Prof. TURNBULL: Lynn, that's a really excellent question, as we celebrate today Mrs. Shriver's legacy. When Jay first - well, when my husband Rud and I first married, Jay was seven. And Jay came to live with us. And at that time, one of my memories is that I had been a special education teacher, and often people would say to me, oh, you must be so patient, which is not right at all. But after Jay came home, it switched to, oh, it must be so sad.
Prof. TURNBULL: And I can remember lots of those early experiences being one of sympathy and worst-case-scenario pity. And things over the years, so much because of Mrs. Shriver and the work that she has done, has gradually evolved -no huge, momentous changes, but slow, steady changes. In thinking about Mrs. Shriver, I was a public policy fellow at the Kennedy Foundation. And my family and I were moving to Washington for the year. This was in the late '80s. And we were trying to find a house to rent, a furnished house to rent. We'd looked at a house in Bethesda, and the person who owned it - a psychology professor at one of the surrounding universities - when we commented to him that we had three children and one - we told him the grades of our daughters, and then that our son was in special education, he paused and he said I'm sorry, but I can't rent to you.
Prof. TURNBULL: And we said, what do you mean? And he said, I couldn't do that to my neighbors.
NEARY: Now, what year was this?
Prof. TURNBULL: This was in 1986, 87.
NEARY: Not that long ago, really.
Prof. TURNBULL: Yeah. And he said, and I couldn't do it to my property. I'm leaving my furniture here, and I couldn't take that risk. And I said, well, our daughters Amy and Kate would be the first to tell you that their brother is far tidier than they are, and that he takes excellent care of property. And said, I'm sorry. I can't rent to you. I just can't accept that responsibility. That's the sort of thing that Mrs. Shriver committed herself to change.
NEARY: And do you think that it would be impossible to encounter that today, or do you think that those kinds prejudices still linger?
Prof. TURNBULL: I think that they still linger in some places, but I think not as typically as they did 20 years ago. I think that today, they're - our son had an amazing home in a typical neighborhood in our community. He owned his own home. He worked at the University of Kansas for over 20 years. And he was a person with a very significant intellectual disability that was compounded by also having autism and a bipolar disorder. And I think the very way he lived his life in our community is an example of what's possible in communities across the country when people with intellectual disability have a chance to experience dignity in their lives.
NEARY: All right. We're going to take a call now. We have Jessica on the line from Traverse City, Michigan. Hi, Jessica. Go ahead.
JESSICA (Caller): Hi. I have an uncle who was born with brain damage, and he lived with my grandparents up until they passed away. And then from that point on, he was moved to a home. And I just feel that I don't necessarily think, in terms of attitudes, how much they've actually changed. I think there's still a great deal of ignorance out there, because, like as Ms. Shriver was working towards - there was not enough exposure. It - that's the bottom line. When you look at the things that people find amusing or funny or uncomfortable, if you've never been exposed to it, you have no awareness, no relation, no nothing to basically process that and see how would you make this person more human? Or, how would you make the person have dignity? So…
NEARY: So, that seems to call for greater integration into the mainstream society, I would think, Ann Turnbull. In order for attitudes to change, I think what this caller is saying is more of us need to know and have some kind of relationship with somebody who has this kind of a disability.
Prof. TURNBULL: Lynn, I think that's exactly right. Jessica, you make a good point, that the more that there is exposure, the more that people with intellectual disabilities are living in typical neighborhoods and going to typical schools and working in typical employment settings and hanging out in the community where other people without disabilities experience recreation, the more acceptance there's going to be, relationships.
Prof. TURNBULL: Jay's greatest social security was not the government money, but it was his authentic relationships with so many people who cared about him.
NEARY: Let me just ask you, Jessica: What was your experience when you were with your uncle? Did people treat you and him strangely in any way? Did they - what happened?
JESSICA: Well, I think like the last caller mentioned, you know, you get a lot sympathy more than anything. People look at you and think, oh, how unfortunate, and that must be really sad, or this or that. But in terms of exposure, I was really fortunate. The grade school I went to had a really great program that integrated people with all kinds of disabilities, whether it was deaf, blind, mental disabilities, all that. And then they integrated the regular students in for, like, one period a day, where you collaborated with them on some project or another. Perhaps you learned signed language. Other times, it could be a form a recreation. And I think - I know to this day from that experience alone, I have had - even with my uncle, like, that has changed a lot in my viewpoint of anyone with any kind of disability.
NEARY: All right. Well, thanks so much for your call, Jessica.
JESSICA: Thank you.
NEARY: And I want to invite Paul Marchand to join the conversation now. He is the director of the Disability Policy Collaboration for the Arc. That's an organization for people with intellectual and developmental disabilities. And he is joining me here in Studio 3A. Good to have you with us.
Mr. PAUL MARCHAND (Director, Disability Policy Collaboration for the Arc): Delighted to be here.
NEARY: I want to follow up on what we just heard Jessica say, the caller Jessica say, about her experience in terms of having a school that helped her to understand people with intellectual disabilities. How important is that? How important is it for young people to get that kind of exposure and that kind of education in order for attitudes to change going forward?
Mr. MARCHAND: A short history lesson. It took us until 1975 as a nation to guarantee the right to a free, appropriate education for all students with disabilities. That was a great victory for the disability community in guaranteeing that children who are forced to live at home - legally forced out by principals and school boards from an education - one terrific, unintended consequence of that great civil rights law was that for the first time, students without disabilities were exposed to students with disabilities on a day-to-day basis. And so simply, that exposure has brought up the latest and new generation of children, who are now young adults, who have spent their entire educational lives with students with disabilities.
NEARY: And do you think that really has affected attitudes in general society for good?
Mr. MARCHAND: It has affected the attitudes of those children. I'm not sure the attitudes of their parents or grandparents or others have been dented enough yet. And there's ample evidence that we could talk about, about how society is still well behind the curve in regards to accepting individuals with intellectual disabilities in our society.
NEARY: All right, let's see if we can get a call in here before the break - John, calling from Colorado. Hi, John.
JOHN (Caller): Hello. How's it going?
NEARY: Good. Go ahead.
JOHN: So, well, I'm a host home provider for two developmentally disabled adults, one that is fairly high-functioning. And her experience seems to have changed a little bit, but not as much as we would like, as far as what society - how society views her, you know, different insults that she has gotten, expectations that are perhaps a little beyond her ability in the work world.
So I just wanted to kind of attest to the fact that things have changed quite a bit, and I've been working with this population for, I guess, 15 years now. And - but it's still - it is fairly slow.
Mr. MARCHAND: I would concur with that. Going back into my first years in special education in the mid-'60s, all of the children who could get into school at the time were completely segregated from their peers without disabilities. Indeed, my classroom was right next to the band room, which means that I could barely hear them, and they could barely hear me.
Things have changed significantly since then. However, less than 20 percent of students with intellectual disabilities spend a significant portion of their day in the regular education classroom with their peers today. We should be doing much better than that.
NEARY: Paul Marchand is director of the Disability Policy Collaboration for the Arc. We're also joined by Ann Turnbull. We'll be continuing our discussion about attitudes towards people with intellectual disabilities when we return after a short break. You're listening to TALK OF THE NATION from NPR News.
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NEARY: This is TALK OF THE NATION. I'm Lynn Neary in Washington. We had planned to talk in this hour with the author of "American Chinatown." We have moved that conversation to tomorrow.
Right now, we're discussing attitudes about intellectual disabilities. Eunice Kennedy Shriver spent her life working to change the way we view people with disabilities and in many ways succeeded. If you or a family member has an intellectual disability, tell us your story.
Our number here in Washington is 800-989-8255. Our email address is firstname.lastname@example.org, and you can join the conversation at our Web site. Go to npr.org, and click on TALK OF THE NATION.
Our guests are Ann Turnbull - co-founder, co-director and distinguished professor at the Beach Center on Disability at the University of Kansas - and Paul Marchand. He directs the Disability Policy Collaboration for the Arc. That's an organization for people with intellectual and developmental disabilities.
We'd like to take a call now. We're going to go to John, and John is calling from Wheat Ridge, Colorado. Hi, John.
JOHN: Hello. So, as I was saying, as a host home provider for two special-needs folks, things haven't entirely changed, particularly in the work world. It seems as though the expectations that one of my clients has to deal with are pretty high, and people are not entirely understanding, and it's unfortunate. And I have to say that as much as societal attitudes have changed somewhat, we can look at the average sitcom or the average cartoon or the average, you know, funny movie, and the characters that are sort of the butt of so many jokes are the characters that seem to be intellectually not as sharp. And it's like our - the very foundation of some of our sense of humor is mocking people that seem to be not as intellectually sharp as others, and I think that that is not necessarily helping with people's images of special-needs folks.
NEARY: All right, thanks so much for your call. And Ann Turnbull, could you respond?
Prof. TURNBULL: Yes. I think John makes an excellent point, that we've come to a point in our society where it should be absolutely unacceptable to have the type of humor and mocking that John just talked about. Just thinking about it makes my blood pressure boil. And that is something that, as a society, it should just - we need to move to a time when everyone knows that that is just not funny.
NEARY: And here's an email from a mother, a parent, a listener from Highland, Illinois. I am the parent of a child with Down Syndrome. I'm glad things are so much better than they were even one generation ago, but I will not believe that we have made any real progress until I hear the R-word, retard, bleeped out on primetime television like other hate speech.
As it is right now, we hear it in primetime, on networks, on cartoons, on reality shows, and as one of the backbones of most stand-up comedy routines. My dozens of attempts to discuss this with my congressional representatives and with members of the FCC have fallen on deaf ears.
Mr. MARCHAND: Well, we're hoping to make some inroads in federal policy by eliminating the term mental retardation, which is where the retard comes from. And mental retardation was a medical term used by physicians and psychologists and psychiatrists to label individuals with a particular kind of impairment. It is definitely time to get rid of the R-word. Most organizations dealing with disability or intellectual disability have moved well beyond the R-word.
Remember that the words idiot, imbecile and moron were medical terms decades ago. And yet now they are part of the typical conversation, don't have the same connotation as the R-word because it was decades ago. But it's the same principle.
NEARY: And we should point out that your organization, which has been around for a long time, actually has changed its name, or has adapted its name.
Mr. MARCHAND: That is correct.
NEARY: I wonder if you could explain that for us.
Mr. MARCHAND: Sure. Well, the Arc has a 60-year history, and the Arc was founded and is still operated by parents of children and adults with intellectual disabilities. And we have moved from retarded children to retarded citizens to an acronym, and now the Arc is not an acronym. It is simply the Arc, as two words, meant to designate a national organization. There are still people who might be concerned with that word, but it is the name of our organization, and it is not meant to designate the R-word.
The movie last year, "Tropic Thunder," which portrayed Simple Jack, a person with mental retardation, created a firestorm in our world. And the people who were most angry at that depiction were not the family members, but people with intellectual disabilities themselves. And in hundreds of movie theaters around the country, while that movie was playing, there were pickets. There were T-shirts with the R-word crossed out. There was a lot of conversation about hate speech, about inappropriate speech. And that, if anything else, shows you how far we still have to go.
NEARY: And you raise something interesting I want to get into, which is the degree to which people with intellectual disabilities have taken ownership of this movement on behalf of their own rights. But I do want to take some calls, and then I want to pursue that a little bit further with you.
We are going to take a call now from Andrea in Spokane, Washington. Hi, Andrea.
ANDREA (Caller): Hi. Thanks for taking my call. I just wanted to talk about my experience as a mother. I have a five-year-old with - he has cerebral palsy. And I find I was - the situation that I find myself in with him is that I feel that it's my job and my husband's job to sort of be ambassadors for my son and for all people with disabilities by encouraging people - like when we're out in public, if somebody is staring at my son or, you know, just getting a lot of looks from them, we try to really engage those people in a dialogue, where we encourage them to ask questions and just really see that my son is a normal child, just like any other child. He has the same hopes and desires, and you know, that he's just a person, too.
NEARY: Ann Turnbull, I'm wondering if you can talk with Andrea about this. She has a very young child with a disability, and you, of course, raised a child.
Prof. TURNBULL: Well, Andrea, I think you're doing exactly the right thing. It really warms my heart to hear you talk about being an ambassador because I think the more we create those linkages to people, the more we understand that some people are not intending to be mean-spirited, but they have not had a chance to learn to be sensitive on this issue.
And then another thing that makes me think is, Andrea, you're providing a wonderful example to your son because you are modeling for him what he can do on his own when you're not there. But our greatest hope is that it's not just the responsibility of parents and individuals with intellectual disabilities to be advocates and ambassadors but the classmates, the co-workers, the neighbors, the members of religious communities.
As a society, when all of us take on an opportunity to be an ambassador - one thing I valued about Jay, my son, so very much is he had a wonderful handshake. And it was a different handshake, but he would reach out to people and he would do his special handshake. And that was his gesture of inviting people into his life. And when he died, hundreds of people wrote us about his handshake and what that meant. And so exactly what you're doing, Andrea, of reaching out with a positive attitude of let's find our common ground is building a new tomorrow. And that really was Mrs. Shriver's greatest vision.
NEARY: Thank you so much for calling, Andrea. I appreciate it. We're going to take a call now from Paula, who is in Charlottesville, Virginia. Hi, Paula.
PAULA (Caller): Hi. I'm a special education teacher here in Charlottesville. And actually, I'm aware of your work, Ann. I studied with Marti Snell and Adelle Renzaglia.
Prof. TURNBULL: Yes.
PAULA: Yeah. And so I've heard of your work a long time. I've been a special education teacher with students with moderate, severe and profound handicaps for about 25 years now, and I certainly have seen changes and I've seen improvements over time. I teach a transition program for young adults, so students who are making the transition out into the regular world. And I guess what I would see that I think is a continuing issue is that people want opportunities.
The students I know really want opportunities to be part of the work world, to have adequate transportation, to have the opportunity to have a social life. And one of the things that I see as a real barrier is the - is public policy and funding. When you have a person with a disability who needs an attendant, it's great, if they can go out with one person or two people with disabilities and an attendant. But when you, because of funding, have to have eight people go with one person, then it's like a big class, like a big herd. It's really - it completely negates the - sort of the status of those individuals as adults. And…
NEARY: And Paul Marchand, this is your area, specialty policy - maybe you can address some of the issues that are being raised here.
Mr. MARCHAND: Well, certainly, Eunice Shriver was an incredible champion and should not be pegged solely as the founder of the Special Olympics. She was a true champion in the public policy world as well. Using her connections with her brothers, using her own connections, she was on Capitol Hill time and time again fighting for civil rights, fighting for community-based housing, fighting for health care…
Mr. MARCHAND: …fighting for Social Security. She was just amazing, a great inspiration to those of us who are paid to work on public policy.
NEARY: A lot more work to be done this area though?
Mr. MARCHAND: Oh, immense. As sad as the loss of Mrs. Shriver, hopefully the temporary loss of a brother, Senator Kennedy, has been very problematic in the day, today, as we as a nation strive to figure out what to do with health care, and very important for our constituency, long-term services and supports…
NEARY: Yes, long term, right.
Mr. MARCHAND: …which are link to health care.
NEARY: So you're talking about - and this is a big problem, I know, in this community. Paula, thank you so much for calling in.
PAULA: May I say one more thing?
NEARY: One more, go ahead.
PAULA: It's much the same, I think, in the case of people who are supporting elderly people. When you - when the people who are providing the direct service - that is, the aides and the direct service people - are paid such a low amount of money, it becomes really difficult. So you have people with the level of commitment and the quality of attention that you want to have for people who are very vulnerable. And I think that's another issue that comes up within state agencies and nationally, that the people who are doing this important work need to be being paid because these are our important people.
NEARY: All right. Thanks so much for your call, Paula.
PAULA: Thank you.
NEARY: And we are talking about people with intellectual disabilities and how attitudes have changed or not with regard to them in light of the death today of Eunice Shriver.
And you are listening to TALK OF THE NATION from NPR News.
Let me ask you, Ann and Paul - inherent in some of the conversations that we're having, is there sort of a belief that people with intellectual disabilities are dependent, that they can't take care of themselves? And we were just talking about the need for caretaker. Obviously I would think there's a range of disabilities and so some people may need caretakers more than others. But there's also - what about the move for independence?
Ann, you were saying your son was out on his own, living very independently.
Dr. TURNBULL: When I say out on his own, he had support with in-depth setting. He had a more substantial intellectual disability than a lot of people. And, Lynn, you're exactly right, there is a range. But one of the most exciting directions, what really changed Jay's life for the better and our life, was when he was able to receive the Medicaid funding for him directly to him, so that it could be spent on the life that would best suit him rather than that money going to an agency.
And I believe that one of our greatest future directions is to provide as much choice and control as possible for people with intellectual disabilities. And when those people, similar to Jay, need support in making that happen, then they are surrounded by family and friends who can enable them to have the life that all of us want for ourselves, an opportunity to control our front door and opportunity to have a job where we can contribute and to have valued friends.
NEARY: And Paul, we were starting to get into it a little bit early about the fact that a number of people with intellectual disabilities have the ability to lead some of this movement for their rights.
Mr. MARCHAND: We have a new, relatively new national organization called SABE, Self Advocates Becoming Empowered, and it is totally controlled by people with intellectual disabilities. They are a moving force. They are a growing force. And they are very well, in their own ways, articulating the needs for the supports that they need in order to achieve the independence that they want -that is, economic independence through a decent job; that is, independence and ability to move about their community, have friends that they choose, and not be needing an agency to craft their lives for them based on the funding services that might be coming in their direction.
Dr. TURNBULL: One of their mantras is nothing about us without us. And that's the bottom line.
NEARY: And was just something that Eunice Shriver was supportive of as well, is this - Paul?
Mr. MARCHAND: Well, I think if you see videos, speeches that Mrs. Shriver gave at Special Olympics events or other events, which she attended many, that was basically her theme: achieve to the greatest whether on the athletic field or in real life. And certainly we can point to her as somebody who helped very much turn the corner from dependence to independence.
Prof. TURBULL: Paul, when you say that I'm recalling meetings that the two of us and others had with Mrs. Shriver on many occasions, it was always interesting to me that many people would try to impress Mrs. Shriver by being as esoteric as possible or, you know, dropping names or having the perfect pedigree. And Mrs. Shriver, her bottom line was not having your head in the clouds but having your feet on the ground. And she always would just look people in the eye and say, what's in it for people with intellectual disability, or be practical.
You know, and her bottom line was she wanted people to have better lives. And she didn't want to reward people who were proposing ideas that ultimately were going to make them look good.
NEARY: A great tribute. A great tribute.
Prof. TURBULL: Yes.
NEARY: Thanks so much, Ann Turnbull. Ann Turnbull is cofounder, codirector and distinguished professor at the Beach Center on Disability at the University of Kansas. Paul Marchand is director of the Disability Policy Collaboration for the Arc. Thanks to both of you.
You're listening to TALK OF THE NATION from NPR News.
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