TONY COX, host:
This is TALK OF THE NATION. Im Tony Cox in Washington. Neal Conan is away.
Monday marked the 20th anniversary of the Americans with Disabilities Act. The law banned, for the first time, discrimination against people with disabilities. It required business, buildings, transportation, public transportation and other services to accommodate the disabled and outlawed workplace discrimination against disabled workers.
The signing of the historic civil rights law followed a growing frustration among the disabled population, who often felt isolated, even persecuted, and they took action.
Sit-ins in April, 1977, in California led to a special hearing with members of Congress, where activist Judy Heumann gave this spirited testimony.
Ms. JUDY HEUMANN (Disability Rights Activist): We will no longer allow the government to oppress disabled individuals. We want the law enforced. We will accept no more discussion of segregation. And I would appreciate it if you would stop shaking your head in agreement when I don't think you understand what we are talking about.
(Soundbite of applause)
COX: Judy Heumann, at a hearing before two California congressmen.
Despite the strides made over the last two decades, issues remain - most notably, unemployment still disproportionately high for the disabled. We'll look at how far we have come and what's still left to be done with NPR correspondent Joseph Shapiro.
Later in the show, the eternal memory of the Internet and what it means to all of us and the meaning of privacy.
But first, the Americans with Disabilities Act, 20 years later. What's changed? What hasn't? If you are a disabled person or caretaker, tell us your story. Our number here in Washington is 800-989-8255. Our email address is talk@npr.org. And you can join the conversation at our website. Go to npr.org, and click on TALK OF THE NATION.
With us now, NPR correspondent Joseph Shapiro. He is also author of "No Pity: People with Disabilities Forging a New Civil Rights Movement," joining us here in Studio 3A. Joe, nice to have you.
JOSEPH SHAPIRO: Thank you, Tony.
COX: Let's begin with this: What has changed the most for people with disabilities since the ADA was signed 20 years ago?
SHAPIRO: The way we look at disability, the way we define disability. Those young activists like Judy Heumann from the 1960s and the '70s built this civil rights movement that led to the passage of the ADA, and that led to a society that's very accessible for people with disabilities.
And also, I should say, of those of us as we get older, it's created more opportunities to get work, to get on a bus. That was something that was hard to do if you were in a wheelchair 20 years ago.
Now, every city has accessible transportation to get into a doctor's office or to go to the movies, to get into a hotel or a restaurant, basically to give people with disabilities the chance to do the same things as everyone else does.
And by the way, I should say that it changed the world not just for people with disabilities but for all of us. I mentioned that, you know, we're an aging society. So we'll all benefit from these things.
In 2003, I broke my ankle. I was on crutches, and I was on a walker, and because of the ADA and the way it had changed our world, I was able to get into the buildings to do my reporting. Because of the new curb cuts in my neighborhood, I could walk my kids to school on my walker I had a walker and crutches although I couldn't get into the school building, which was 75 years old and had lots of steps.
COX: You know, that's interesting you should say that. I broke my ankle, also, and my office at the university is on the second floor, and if the elevator broke down, I was just completely out of luck. And you do begin to take these things more seriously when you are confronted with movement or the lack of the ability to have access.
One of the things I want to ask you, before we get into our callers in a minute: What does the law define as a disability?
SHAPIRO: The law says that a person is considered disabled if they have a physical or mental condition that substantially limits one or more major activities of life. So that means things like walking or dressing or seeing or hearing. But most of the disabilities that are covered by this law are not so obvious. So think about things like diabetes or cancer, psychiatric disabilities, brain injury, epilepsy, HIV/AIDS, heart disease, learning disabilities. It covers a broad range.
COX: Here's an email that we've gotten already. It's from Larry(ph) in Oberlin, Missouri, and he asks: The visually impaired have been shortchanged in the ADA. Movies and TV can easily adapt to audio description, but it is voluntary and should be required. Thanks, Larry, for that. What do we say to Larry?
SHAPIRO: The well, there's been a lot of changes in creating captioning, and these are things that, again, sort of benefit lots of people. Closed captioning on television was something that was often used by people who wanted to learn English. It was a great way to learn English. Or, you know, we can follow something that's on television when we're in a bar or a restaurant.
But there's the ADA didn't do everything, and there have been changes that Congress has addressed in the last few years, including trying to change the make clear who gets covered by the ADA.
Congress in 2008, there was actually an interesting bipartisan coalition between the disability community and the business community to try to make it clear because of court decisions that sort of made it unclear who was covered by this law. So there's still been refinement and changes in this law.
COX: Absolutely. And access, meaning mobility, isn't the only challenge facing those who are disabled. One of the biggest challenges for disabled people has been finding employment.
You recently spoke to Leonard Keppel(ph), who is deaf and uses video technology to talk to potential employers.
Mr. LEONARD KEPPEL: In my case, you know, I can talk, and I can convey my technical knowledge. However, when they ask me questions, the interpreter is going to hear terms that they've never heard, and they're going to try their best to try and tell me what's going on.
But still, it makes it very awkward, and it can sound like often that you're hesitant, not confident, not really understanding what's going on.
COX: Now, Leonard Keppel was a person that you interviewed. Describe for the audience, if you will, how that conversation took place because it was fascinating to hear.
SHAPIRO: Right. So Lenny's deaf, but because of the ADA, he can use the telephone. So when I interviewed him, I called a video relay service, something that's been set up under the ADA.
So my call goes to a sign-language interpreter. The sign-language interpreter is on a videophone and contacts Lenny on his videophone. They can see each other. So I ask a question. The video relay operator signs it over the videophone to Lenny. So they can see each other. She signs to him, and then he answered in his own voice. And I could hear his answers over my regular phone. It was pretty seamless. It worked very well.
But and technology makes a lot possible. What he was describing there is that it's not quite a perfect system because you still are depending on this middle person to do the interpretation. And he was saying, look, they might not know all the technical terms for my industry. He was a software engineer. And it made it hard for a job interview.
Employment's been the one area that there hasn't been as much improvement for people with disabilities as many had hoped when the ADA was signed. And currently, their unemployment rate is 14.4 percent, compared to 9.5 percent in the general population, and that doesn't count all the people with disabilities who have just given up looking for jobs or didn't get into the job market in the first place.
COX: Well, that would have, I would think, Joe, initially been perhaps done because companies felt that the cost of adapting their buildings for the disabled was more than they wanted to spend. But since it's been mandated into law, that's not you would think that would not be the issue any longer.
SHAPIRO: Well, there are lots of reasons why the unemployment rates stay high. For one thing, sometimes a disabled person just can't afford to take a job. The new income they get might disqualify them from getting government-sponsored health insurance, and a job might not provide that health care that they need. The new health law should help with this.
But the biggest problem may simply be bias that still exists from employers. That's certainly what Lenny Keppel thought he faced. By the way, critics of the ADA have suggested that employers are afraid to hire somebody with a disability because they're afraid it's going to cost a lot of money to make this accommodation, but there was a federal study that showed that most accommodations cost very little. The average cost is $200, and one out of five costs nothing at all.
It could be something very simple like adding computer software to magnify type on a computer for someone who has a visual impairment.
COX: You know, 20 years that we've had this, and yet there is still a ways to go. Here's another email that speaks to this. Terry(ph) from St. Louis, Missouri: It surprises me that although we have had the ADA for 20 years, we still have restaurants and other businesses that will stop my wife because she has a seeing-eye dog, which is allowed in any building.
There are still restaurants that have no Braille menus. How much more needs to be done is the question asked by Terry.
SHAPIRO: Well, the first one that and it does happen that somebody who has a service dog is not allowed in a public accommodation, even though the law protects them and says they should be.
That shows that we still have a way to go in changing attitudes. That takes time. That takes experience. As we get to know people with disabilities, some of those biases and misperceptions change.
COX: I don't know if you know the answer to this or not, Joe Shapiro: Would you say that it was education, primarily, that began to change people's perspectives about those who have disabilities, or was it the law? What was it that brought about the change that we have at least had so far?
SHAPIRO: I think it's people with disabilities themselves.
COX: Really?
SHAPIRO: Yeah, they said, look, we want to lead the same kinds of lives that everyone else leads. We don't want to be isolated. We want opportunities. We -and what was interesting was they sort of redefined what disability was.
The rest of society saw it as a medical issue. They said: Our problems aren't medical. Our problems are societal. It's the attitude of that person in the restaurant who won't let me in with my service dog.
It's my issues are the barriers that society puts up, the steps in front of the building so I can't get in, the lack of accessible transportation.
It was people with disabilities who changed things by saying: Our problems are not medical problems. They're issues of access, of rights, of the barriers that society puts up in front of us.
COX: And so in 20 years, there has been I don't know. I don't want to put the wrong term to it, but I would suggest perhaps great progress, but yet there is great progress still needed.
SHAPIRO: I think that sums it up well.
COX: All right, we're talking about the Americans with Disabilities Act, 20 years later. What has changed? What has not? If you are disabled or are a caretaker, give us a call at 800-989-8255, or drop us an email. That address is talk@npr.org. We're going to talk more with NPR's Joe Shapiro in just a moment, and we want to hear from you, as well. I'm Tony Cox. It's TALK OF THE NATION from NPR News.
(Soundbite of music)
COX: This is TALK OF THE NATION. I'm Tony Cox, in Washington.
We're talking with NPR's Joseph Shapiro about the 20th anniversary of the Americans with Disabilities Act. On July 26th, 1990, President George H.W. Bush signed the act into law, saying this presents us all with an historic opportunity. It signals the end to the unjustified segregation and exclusion of persons with disabilities from the mainstream of American life. The Americans with Disabilities Act represents the full flowering of our democratic principles, and it gives me great pleasure to sign it into law today.
You can see an archived video of that signing ceremony. We have posted a link at our website, npr.org. Click on TALK OF THE NATION.
And we'd like to hear from those of you with disabilities and from caretakers, as well. Twenty years later, what has changed, and what has not? 800-989-8255. That's our phone number. Our email address is talk@npr.org. And you can join the conversation at our website. Just go to npr.org and click on TALK OF THE NATION.
All right, Joe, let's pick up the conversation again. We've talked about some of the difficulties that you've had, and you mentioned, for example, some of the biases that existed before, and continue to, that have stood in the way.
We have a soundbite that I want to play for you and get you to talk a little bit about it. It's from Rand Paul, the candidate for the Republican candidate for senator, recently was interviewed by Robert Siegel of NPR, and Paul criticized the ADA as an example of government excess.
Dr. RAND PAUL (Ophthalmologist; Republican Senatorial Candidate, Kentucky): Right. I think a lot of things could be handled locally. For example, I think we should try to do everything we can to allow for people with disabilities and handicaps. You know, we do it in our office with wheelchair ramps and things like that.
I think if you have a two-story office and you hire someone who's handicapped, it might be reasonable to let them have an office on the first floor rather than the government saying you have to have a $100,000 elevator.
And I think when you get to solutions like that, the more local the better, and the more common sense the decisions are, rather than having a federal government make those decisions.
COX: Is that reasonable, or is that an example of a bias?
SHAPIRO: Well, what it is is an example of the way we still misunderstand the ADA 20 years later, because contrary to what Rand Paul said, you don't need to build an elevator, to spend $100,000 on an elevator if you hire someone who uses a wheelchair and your building doesn't have an elevator.
Here's what the ADA does say: It does require elevators in new buildings, but only if they're more than two stories high - and also, by the way, in an old building that's been substantially renovated.
So when it comes to an existing building, the ADA and Rand Paul are actually in agreement. The law says it would be reasonable to give that person an office on the first floor. So when you broke your ankle and you were teaching and you were on the second floor, if there hadn't been an elevator, a reasonable accommodation would have been to maybe move your class down to...
COX: The first floor.
SHAPIRO: a classroom on the first floor. Right. So - and the ADA rules were written to be reasonable. The legal language of the law talks about reasonable accommodation, things that are readily achievable.
So, for example, not every restaurant has to put in a wheelchair ramp. There's sort of a rule of thumb. The restaurant should be able to expect to get back the money, in new business, what it paid for that ramp.
You know, a few years ago, I went to a restaurant that had put a ramp over a couple steps, and I went with a friend of mine in a wheelchair. We went to that restaurant specifically, because we knew it was accessible. We went in, and across the room, there was a party of several people and the - with a man in a wheelchair.
And I realized that restaurant, in one night, had basically made back the money that they had paid to put on that ramp.
COX: Well, in terms of what Rand Paul said - and this isn't about Rand Paul at all. But in terms of the point he was making about the government and the government's role in implementing this, are there some areas and if so, what are they where the ADA perhaps falls short?
SHAPIRO: Where it falls short? Well, one of those issues has been in health care. It didn't talk about insurance, and we hope that the new health care reform law - which ends the issue of preexisting conditions - will help address some of these issues.
And also, by the way, the health care law provides things like long-term care health insurance so that people can make decisions so that people can get some money to make decisions about where they live and what kind of services they need if they become older and disabled and face a decision like bringing in caregivers or going to a nursing home. That's another issue that the that is still being struggled with, this issue of helping people have their choice of where they want to live when they need long-term care services.
COX: All right, let's take a call. This is George in Tallahassee, Florida. George, welcome to TALK OF THE NATION.
GEORGE (Caller): Hey Tony and Joe, good to thank you for having this program. I'm a visually impaired person who graduated from a major university in Tallahassee. I work for that university.
And the one thing that I still see in the situation of employment is that when you try and get certain organizations to help you get into, like, computer training and stuff like that, because you've worked in a certain occupation for a lot a number of years, they tell you no. You don't need it. And so they shut you out. So that part of it still needs to be dealt with.
COX: What about that?
SHAPIRO: Well, I think this is an example of people with disabilities teaching us that they want to have the chance to do whatever anyone else would do.
Too often, we assume that there are just certain services and things that people with disabilities can do. There was a time when there were only certain jobs that we thought people could do.
We are changing that now, and again, it's people with disabilities often have overcome those sort of attitudes and biases that they can't do certain jobs. And then when they get those jobs, they sort of prove that they can do these things.
COX: We're getting a lot of calls. Here's Wendy from Kansas City, Missouri. Wendy, welcome to TALK OF THE NATION.
WENDY (Caller): Hi, thanks very much. I just wanted to point out, I've heard a lot of wonderful things being said on the program. Mr. Paul was a perfect example of what's wrong in his statement.
We cannot legislate human decency, and this really is not a matter of Americans with disabilities. It's really about Americans showing humanity and civility. And we can't legislate those things.
We as individuals- me blind, and someone else not - realizing that we all have options and choices to make, and that the able-bodied world should not be the ones who are in control or in charge of what is dictated to us, the quote-unquote "disabled," about what we can and cannot have permission to do.
So I've heard this being stated on the program today in very eloquent ways. I appreciate it more than I can say. Carry on, gentlemen, and congratulations.
COX: Wendy, thank you very much. Before you respond, Joe, there's another caller, Jackie, from San Antonio, Texas. And Jackie's point sort of dovetails in with what we just heard from Wendy. Hello, Jackie. Welcome to TALK OF THE NATION.
JACKIE (Caller): Hello, Mr. Cox, Mr. Shapiro. Thank you for the program. And I just want to say I'm an American citizen with a college education, substantial work experience and a disability. And I have been discriminated against, harassed and retaliated against in employment because of my disability.
I cannot get into the specifics, as I told the nice lady on the phone, because of confidentiality in some cases. However, I can tell you that I was discriminated against, harassed and retaliated against based on the fact that I have a disability.
And it's so much easier with me, frankly, because mine is what's known as a hidden disability. I have exactly the same disability that the late, great actress Katharine Hepburn and the late, great Senator Robert Byrd do.
COX: Jackie, thank you for the call. Before you respond to both of those callers, let's try to put it in, perhaps, Joe, a larger perspective, put an umbrella on top of it, and it's this, because one of the callers said earlier that they had problems with non-disabled people. I'm not sure what the right word is to use there - able-bodied people, perhaps - leading the charge, so to speak, where disabled people are involved.
And my question is whether or not the disability movement is one that is being led by people who are disabled. And does that - should that make a difference?
SHAPIRO: Yes. It is led by people with disabilities. It does make a difference because they are the ones who know best what they need to lead independent lives. And also often it's - spouses and parents have also been involved. But this is a movement that is led by people with disabilities.
COX: Has that evolved over the years?
SHAPIRO: Evolved? You know, these first groups that were set up to help people with disabilities were often set up by doctors. Then parents came and they set up their own organizations because they didn't think doctors quite got it. And then people with disabilities themselves set up their own. They said, you know what? We really know the best.
COX: Is there any way to know - before I read this next email that I have for you - is there any way to know whether the numbers, the percentage of people in the American population who are disabled, has grown, or is it about the same or is it smaller?
SHAPIRO: It's growing as we get older, as we become a graying society. The census bureau says that about one in five of us has a disability.
COX: Now, when we - as we age, you mentioned that, you know, our sight begins to go and the legs and limbs and things begin to not work the way that we want them. But that is not considered, or is it, a disability?
SHAPIRO: That's a disability. And all those issues are things that the ADA and this Disability Rights Movement will help protect us with. And older people may not identify themselves as being disabled. But universal design, this idea that we create products and environments that anyone can use, disabled or not, that's changing the way we're building housing for people as they age so that people can age in their own homes; just simple things like raising where you put an electrical outlet so you don't have to bend down so far. Levers, you know, changing door knobs so that they're easier to use. The utensils that we use for people who might have arthritis.
We're just changing the way we design things in this country. It's - the aging community talks about this now, but it came out of the disability movement.
COX: Here's an email from Sam. What are your feelings regarding people and lawyers who repeatedly sue small businesses and companies for failure to fully comply with the ADA requirements? Unfortunately, it seems that some use this law as a means for income versus using this law to provide a more accessible business.
SHAPIRO: There have been some cases of people who have fought a lot of lawsuits and - but those are generally rare cases or a few lawyers here and there who've done that. But the - there's also this issue of 20 years after the ADA has been passed that there's a lot of businesses that could easily comply that have not.
COX: I'm Tony Cox, joined by Joe Shapiro.
You're listening to TALK OF THE NATION from NPR News.
Here's another email. A little longer, so bear with me. I'm going to read the entire thing to you. It comes come Sunnyvale, California, written to us by Carol(ph). Thank you, Carol. I work for a retail establishment where all the laws are diligently observed. Both the credit, debit card, signature, keypad, and the countertop are at the legally prescribed distances from the floor per the ADA guidelines.
The situation I'm uncomfortable with is this. There is a businessman who comes in on a regular basis and he happens to be a dwarf. I provide him with a paper credit card slip to sign but the countertop is still several inches over the top of his head. He is always very gracious and he finds something on his person or in his purchases to use as a solid surface. As if this isn't bad enough, our automatic doors sensor is adjusted too high to see him. So I accompany him to the egress to trip the sensor.
I dislike the sensation of having to treat this intelligent, obviously capable grown man as if he were incapable. Will the ADA find a way to address this type of problem? Thank you for your time.
SHAPIRO: Well, the ADA regulations do set the heights that - for things like that automatic door sensor, so I don't know if it's set at the right place. She says that they followed the laws.
And perhaps we can't - the laws can't be perfect every time, but what does make a difference - we talked about attitudes of people. She sounds like she's got a great attitude and she's looking at this person as a person. She's trying to not be patronizing. She's trying to find a solution and - that is dignified and treat this person as she would any other customer. And that's also a great solution.
COX: Here's one last email for you, Joe. I'm legally blind - this comes from David in Pontiac, Michigan. I'm legally blind. In Michigan we have the right turn on red at traffic lights. I'm afraid to cross the street in front of these cars because I cannot tell which way they are looking. These drivers are usually looking to the left so they can turn as fast as possible, and I have been hit. Are other people having problems with this law? Can this law be reversed?
SHAPIRO: You know, I have not heard people trying to reverse the right turn on red for that reason. It might be a good idea. And I do have a friend here in Virginia who was struck by a car last fall who was also legally blind and same issue. And she's had some terrible health problems as a result, so it is a serious problem.
But I don't know of any efforts to try to change that law about right turn on red. I think we're too impatient a society to try to change that.
COX: Let's close our conversation on this note. Would you say, Joe, that this continues to be a civil rights movement?
SHAPIRO: It is a civil rights movement. And we heard in that introduction - we heard Judy Heumann talking about the oppression of people with disabilities. And it's a civil rights movement that's started by people with disabilities because they think of their issues as civil rights issues.
You know, Judy Heumann's story says a lot about how far we've come. She dreamed of becoming a teacher, an elementary school teacher. But she was turned away. She - because she uses a wheelchair - 1969 in New York City, so she became a disability civil rights activist. And so here's this woman who couldn't get a job as a teacher, but during the Clinton administration she was the assistant secretary of education for all of special education, all eight years.
Now she's working, by the way, for Secretary of State Hillary Clinton for the State Department, spreading awareness of disability issues around the world. And in fact, all over the world, countries inspired by the ADA have adopted their own versions of disability civil rights laws.
COX: We didn't really talked very much about it except in the beginning, we had the soundbite where the gentleman talked about how young people now have a different approach to this than he did coming up back in the 1960s and before. I guess it is different for them, isn't it?
SHAPIRO: It is. They've been protected by this law. They have different expectations. But they're the most educated generation of disabled people we ever had.
COX: Jo Shapiro was an NPR correspondent, now with our investigation unit, also the author of "No Pity: People with Disabilities Forging a New Civil Rights Movement," joining us here in studio 3A. Jo, thank you very much.
SHAPIRO: My pleasure, Tony. This is great. Transcript provided by NPR, Copyright NPR.
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