20 Years Of Protecting People With Disabilities
MICHEL MARTIN, host:
From the 100th anniversary of the Urban League to another milestone celebrated this week, it was 20 years ago this week that the Americans with Disabilities Act was signed into law. And for the first time in this country, public places, shops, schools, restaurants and so on, had to accommodate people with disabilities
Now that sounds simple, but the reality is far more profound for those living with disabilities. To find out more about how the ADA has changed America, we've called one of the chief architects. Lex Frieden was the first executive director of the National Council on Disability under President Reagan. He's now professor of biomedical informatics and rehabilitation at the University of Texas Health Science Center in Houston.
Also with us is Melanie Brunson, the executive director of the American Council of the Blind. And it's a pleasure to have you both with me in the studio. Thank you for coming.
Professor LEX FRIEDEN (Biomedical Informatics and Rehabilitation, University of Texas Health Science Center, Houston): Thank you for having us.
Ms. MELANIE BRUNSON (Executive Director, American Council of the Blind): Indeed, thank you for having us.
MARTIN: I just wanted to start by asking, and Melanie, I'll ask you this first, what was it like growing up for you? Do you remember a sense of limitation because you're blind?
Ms. BRUNSON: Well, fortunately, my immediate family had very high expectations of me. But I do remember very well people that we encountered throughout my life who thought that I couldn't do things and were very surprised and sometimes even resentful at my parents seeming presumption that a blind person could actually do things.
I remember a teacher in school saying to my mother, I don't know why you're so worried about her getting all of this education, she's not going to need it because she'll just be taken care of by...
MARTIN: And they said this in front of you?
Ms. BRUNSON: Yes.
(Soundbite of laughter)
Ms. BRUNSON: So it was very disheartening.
MARTIN: And, Lex, what about you?
Mr. FRIEDEN: Well, I grew up when man was going to the moon. And the space program was in full blossom and I broke my neck in a car accident when I was a freshman in college. So I really didn't worry too much about using a wheelchair for the rest of my life when they told me that would be the likely outcome.
But less than a year after my neck was broken, I applied to go back to college and was told that I wouldn't be admitted because I did use a wheelchair for mobility and the school had a policy stating that people with disabilities couldn't be admitted.
MARTIN: And how did you react to that? Was that the first time that that kind of the sense of limited possibility (unintelligible)?
Mr. FRIEDEN: Michel, when I got the letter from the dean of admissions, I was surprised. And I thought it was a mistake. So I called the university and I got to speak to the dean. And he said, a moment, I'll get your file. And he said, you've received the correct letter. We're denying your admission. And I said, well, did you receive my high school transcripts? Did you see I was valedictorian of my high school class? He said, yes, you did very well in school. I said, did you receive my SATs and my other entrance exam scores. He said, yes, I see you were in the top five percentile in the nation. You did very well on your exams.
And I thought a minute, and then I thought, well, this school has a religious background, so I said, did you receive the letter of recommendation from my minister and he said, yes, you did very well in Sunday school. And I said, what's the problem? And he said, you've indicated on your application that you use a wheelchair for mobility and our policy is not to admit students with disabilities.
And I still couldn't believe it. So I said I have a number of friends who are going to school there and they've offered to push me from one class to the next. You've built according to modern standards. This was in 1968, but they already had ramps on their buildings. And he said, yes, we have, but you're not going to be admitted.
MARTIN: So what happened next?
Mr. FRIEDEN: Well, I dropped the telephone and I sat there in a catatonic state for a long time. I think my father came home from work and he asked my mother what was wrong with me and she said she didn't know. That I hadn't spoken since I'd had a conversation on the phone earlier that day. And it took me several days to kind of catch my breath.
And during that period it was an interesting kind of revelation because I had grown up during a time when African-American people were being denied admission to restaurants and to buses and so on. And I thought, I wonder if this is what discrimination feels like.
MARTIN: How did the ADA come about? It's my recollection that it took two legislative tries at least before the bill became law. Can you just - I know it's a long history and worthy of a book, if not more than one, but could you just encapsulate it a little bit for us?
Mr. FRIEDEN: Interestingly enough, recommendations were made to Congress right after the Civil Rights Act was passed in 1964. And no one ever took that seriously. It never got through a committee. In 1988, we published a 13-page draft of a proposed bill. And Senator Weicker, who had a child with a disability, volunteered to introduce that bill in the Senate.
He brought on Senator Harkin, his partner, who was on the other side of the aisle. And together, they actually got some traction for the bill. And that eventually became the ADA.
MARTIN: Senator Lowell Weicker of Connecticut, Senator Tom Harkin of Iowa. Senator Harkin, of course, still serving. Do you recall whether there were some specific incidents or something that kind of gave momentum to the bill? You know, often with the civil rights issue, something has to happen before other people see it. You know, the broader society that aren't directly affected by the issue have to see it.
Like in civil rights case, so many, you know, Selma, Emmett Till, you know, people who weren't directly - whose lives were not directly affected could look at that and say, well, wait a minute, that's not okay. Was there something like that?
Mr. FRIEDEN: Excellent analogies. In 1973, the Rehabilitation Act protecting people with disabilities and providing opportunities for vocational rehabilitation included a Title V that protected people from discrimination in federal buildings and in employment by federal contractors. The regulations never got written on that.
And later on, five years later, people with disabilities sat in federal office buildings for literally days and weeks to get some attention to the fact that this law had been passed and never implemented. Getting later on, a group called Adapt began to block public buses, chain themselves to the buses to keep the buses from moving because they were so-called public and yet all the public couldn't use them.
And then later on in Washington, D.C., the students at Gallaudet reacted when a person who was not disabled was hired to be the president of the university. So all of these actions around the United States, I think, culminated along with a general understanding that our society was moving forward without a certain class of people. That resulted in overwhelming approval of the ADA in 1990.
MARTIN: If you're just joining us, you're listening to TELL ME MORE from NPR News. We're talking about 20 years living with the Americans with Disabilities Act. We're speaking with one of the architects of that legislation, Lex Frieden, and Melanie Brunson, executive director of the American Council of the Blind.
Melanie, I'm not going to tell your age, but you've lived about half your life before the ADA and then the second half of your life with the ADA. And tell me what hurdles remain. You were telling us some interesting stories before you came into the studio about some things that are probably invisible to people who aren't visually impaired. Some of the hurdles that remain, accommodations that still need to be made. Would you just give us a couple examples?
Ms. BRUNSON: I think one of the things that comes to mind immediately is access to more information. One of the biggest hurdles we run into is that you go to a doctor's office, for instance. And the first thing they ask you to do is fill out forms. But if you can't see and you can't fill out those forms, the people in the office, as a general rule, have no clue how to handle that situation.
And if you're with somebody, they just assume that that person is going to fill it out for you. So all of a sudden, your privacy goes out the window because you have to sit in the crowded waiting room and dictate to someone else your name and your address and your Social Security number and all of the information.
MARTIN: And your medical history.
Ms. BRUNSON: And your medical history.
MARTIN: Your personal business.
Ms. BRUNSON: And if you say, well, I don't want this person to fill it out, could you do it for me? They don't want to do that because they don't - they'll say, well, we don't have the staff to do that.
MARTIN: You also mention - and you use a service animal, a service animal assists you - that there are some businesses who won't accept service animals despite the fact that's the law.
Ms. BRUNSON: That continues to - yes, that continues to be a problem in businesses, as well as taxicabs and other places that are open to the public. Restaurants are notorious for saying, you know, you can come in, but you can't bring the dog into the seating area because it'll be too close to other people's food. So that continues to be a problem 20 years after the ADA and 40 years, really, after service animals were granted access rights around the country.
MARTIN: Lex, what about you? What remains to be done, in your view? What hurdles? I mean, we talked about employment.
Mr. FRIEDEN: I really think there are three areas that we have to focus on. One is employment. And employment, one of the things that keeps people from working is not discrimination, but it's disincentives. People become eligible for some kind of benefit if they're disabled and not working. And too often, they become dependent on what is a relatively small benefit if you consider the comparison by one who is working and could earn taxable income.
So that's a disincentive. People are afraid to go back to work because they're afraid they're going to lose their benefit and not only the cash benefit, but also the health insurance.
Now, passage of the Health Reform Act will help some of that because people may be able to go to work and receive employer-sponsored health insurance, which will relieve that. And, frankly, I think it's better if people are paying taxes, so why worry about that cash benefit they're receiving?
MARTIN: What about the consciousness of you as a thinking person, apart from your wheelchair, do you think that has changed? I'm just thinking of an experience I had with a colleague of mine who's a very brilliant colleague. We went to the theater, we were working the same - we both happened to be in the same city at the same time, so we went to the theater together.
And the person who was seating us talked to me as if he weren't even there. And say, well, you can put that, speaking of his chair, over there, as if he weren't even there. And I just, I kind of had that feeling, you had, like, the rage welling up in me. I'm, like, how dare you? Like, this is a grown man, this isn't a child.
Mr. FRIEDEN: That doesn't happen as often as it used to. It's getting better. And one of the things that's making it better is programs like this and the public's awareness is improving.
But, you know, there are still bigots in this world. And that's what we have to address. I think other issues that we have to be concerned about, one is health care. We've talked about health care reform is going to help some of that. And the other one are people - tens of thousands of young people with disabilities who are living in nursing homes today at the cost of five, $6,000 a month to some states.
Because the state is not providing an acceptable option in the community, would be much less expensive, more humane and provide a higher quality of life, more opportunities for that person to be engaged with their family and with their community they live in if we had an infrastructure of services in the community that would enable.
And we've got 79 million baby boomers who are coming along, many of them with age who will become disabled. And they want to live in their own home. They need a little help. They don't need to or want to move to a nursing home before they expire. So there are opportunities for improvement.
MARTIN: All right, more to talk about. Lex Frieden, the first executive director of the National Council on Disability back in 1984. He's currently, he is a professor of biomedical informatics and rehabilitation at the University of Texas Health Science Center in Houston.
Also with us, the executive director of the American Council of the Blind, Melanie Brunson. I thank you both for joining me and congratulations on 20 years.
Ms. BRUNSON: Thank you, it's our pleasure.
Mr. FRIEDEN: Happy anniversary.
Ms. BRUNSON: Indeed.