Mouth asks, What's happened to our rights?
Steve SAYS: “The federal government has totally abdicated its responsibility for enforcement.”
an interview with Steve Gold by Josie Byzek
Editor’s Note: This interview first appeared in Mouth magazine in March 1998. It is amazing to hear the issues that faced the ADA seven years after it was signed. Now, twenty-seven years after the ADA, we are still concerned about the civil rights of people with disabilities.
Stephen F. Gold is the foremost attorney in the disability rights movement. He is co-author, with Diane Coleman, of the Not Dead Yet amicus brief quoted in 1997's Supreme Court decision. As attorney for Idell S. and Helen L., he sued and won against the state of Pennsylvania on grounds of the ADA for segregating people in nursing homes rather than providing them with attendant services in their own homes. He was the attorney in the ADAPT v. Skinner public transportation case as well. Gold is in private practice in Philadelphia, Pennsylvania.
What's the primary problem with the Americans with Disabilities Act?
People don't know their rights.
I am amazed at the number of people with disabilities who do not know what the ADA says, or what the regulations say. I frequently get phone calls from people with disabilities from all over the country who do not understand what the ADA says, or how to use it.
We're talking now about seven years plus since its enactment. That's frightening. The first thing that's got to be done is massive education and advocacy training.
Second, we have to help people enforce [disability rights law] in every conceivable way -- from pro se complaints to street demonstrations. You name it, we ought to be doing it.
People with disabilities have to be perceived as a powerful political entity. With very few exceptions, that is not the case.
I would change the mentality of the disability community to begin to say, 'We're going to get out there and enforce this law.'
Like any other law, if you don't enforce it, it's not worth the price of a pretzel in Philadelphia.
Why is the enforcement of the ADA different from the enforcement of any other civil rights law?
The ADA came about not after a vocal, visible, angry struggle for civil rights. It came about because an elite group thought it should be passed -- paternalistically, in other words. Consequently, there was not equal power in the passage.
The Chambers of Commerce were able to get what they wanted into it, and insurance companies got what they wanted. The movie industry got what it wanted into the ADA, so that you don't have open captioning in movies, or any alternate format. The local government entities got their three cents' worth in.
All the powers that be in our society which clearly have been discriminating in the past and are still discriminating, they all got their ten cents' worth in, or more, during the passage of the ADA, and people with disabilities just didn't have the power to counter that.
The ADA won't even pay for monetary damages for the injury done when civil rights are violated. That's a humongously big compromise on the ADA. I don't know another civil rights statute where a minority whose civil rights are violated cannot get damages for that injury. But the other thing which is really critical is that the only entity that can get damages awarded under the ADA is the U.S. Department of Justice. And Congress even set very specific amounts that they can get.
So two things -- first, it's very paternalistic to set things up that way. Second, and much more critical, is that the DOJ can bring only a very limited number of suits.
We know how backlogged they are, and they just cannot do what needs to be done. If people with disabilities could get compensatory damages when they sue under the ADA, even if those amounts were minimal, that would make it worthwhile to bring the suit.
Then too, if the defendants knew they would have to pay not just to make their store or restaurant accessible, but also to pay damages, they would, on their own, make their businesses accessible.
It's as if the ADA is saying, “If you break this law, the penalty is that you'll have to obey it.”
That's not a big penalty.
What's the best part of the ADA itself?
Just starting right at the top [in the findings of the ADA] Congress says, 'Historically, society has tended to isolate and segregate individuals with disabilities, and despite some improvements, such forms of discrimination against individuals with disabilities continue to be a serious and pervasive social problem.'
Those findings should be used by people as a trumpet, as a clarion.
Disability rights are trivialized by most people. They are not considered civil rights. The fact that a person using a wheelchair cannot get up two steps into a store is not looked at as a violation of that person's civil rights. Or the fact that people can't get on the bus. Or that movies aren't captioned or that elevators are not braille -- those are not looked on as violations of civil rights. Those are perceived by the public as inconveniences or technological difficulties.
But they are barriers to access and they are, by Congress's definition, civil rights violations. Depending on which label you put on them, a different consequence in our society will follow.
The congressional finding at the opening of the ADA, if used by advocates, by people with disabilities, applies to so many circumstances people face. What that congressional finding does is make access a civil rights issue.
Congress says, 'Individuals with disabilities are a discrete and insular minority faced with restrictions and limitations, subjected to a history of purposeful unequal treatment, relegated to the position of political powerlessness in our society.'
But violators always say it wasn't intentional...
What Congress found is discrimination in such critical areas as access to services and access to public accommodations. That made those two steps, that curb without a curb cut, violations of civil rights.
Pre-1990 it might have been unintentional. But when Congress passed the law, it became the law. Period.
Can you imagine what this country would have been like seven years after 1964 if we still had bathrooms marked whites only and colored only? I mean, that's segregation, and that's separation, the bathrooms and the water fountains. It's historic. Back in the Fifties, they'd say they weren't discriminating, that's just the way things were!
When Congress in 1964 passed a law saying access must be equal, if the restaurants and bus stations had continued to keep separate bathrooms and separate water fountains, there would have been a bloodbath in this country.
Same thing with women's rights. Can you imagine passing Title IX and seven years later a college says to you or to your daughter, "Well, we have the football team for the boys, and the basketball team for the boys and the baseball team for the boys. We'll get around to giving the girls a swim team sometime."
Women would have gone crazy.
It seems like the ADA works best in employment cases.
Employment? Employment is a losing battle.
Let me tell you an entity that has been cowardly and impotent. Under Section 503 of the Rehab Act, since 1973, every single business that gets a contract with the federal government was supposed to have an affirmative program for hiring persons with disabilities. The U.S. Department of Labor has never, ever, enforced that.
I'm not talking quotas -- who cares quotas! Go and find out when Boeing gets a federal contract for billions of dollars how many people with disabilities have they hired, how many will they hire, what are they doing. It's not quotas. They have to have an affirmative plan and they have to implement it.
If you go in and Boeing has 60,000 employees and 20 are disabled, that's not an affirmative plan. We're not dickering over the numbers. We're saying that the Department of Labor has not done its job.
The federal government has totally abdicated responsibility for the civil rights of people with disabilities. We see it with the Department of Labor under Sect. 503, we see it with the Department of Transportation in regulating Over-the-Road buses, and with paratransit. The DOT does nothing to enforce the ADA.
We see it with HUD. Each recipient of HUD funds is supposed to have 5% of its houses, the new dwellings, accessible for people with disabilities. We know that doesn't happen. The only agency with the money to go out and look at them and make sure they do it is HUD. HUD doesn't do it in housing, DOT doesn't do it in transportation, DOL doesn't do it in employment.
When historians look at the disability movement from 1973 to 2003, the most shocking thing will be how the federal government totally abdicated its responsibility. Under Title III, people weren't given any teeth to do it. Congress passed the law. The federal agencies are supposed to be enforcing it and they don't.
People can bring a lawsuit. We have that pro se complaint, so people can file their own lawsuit. That was done solely because there are no lawyers who want to do these cases.
But the ADA doesn't call for equal access in all cases. It's program access, right?
That's not what the ADA says. That's a misinterpretation. Let's look at the law.
First, when you use the word 'program' you're in Title II, which applies to government. That term is not involved at all in Title III.
Congress wrote, 'Subject to the division of this Title, no qualified individual with a disability shall, by reason of such disability, be excluded from participation or be denied the benefits of services, programs or activities of a public entity, or be subject to discrimination by such an entity.' DOJ, in its regulations under program accessibility, said basically the same thing that Congress said.
In 1992, you were to look at a government program, service or activity and then, when viewed in its entirety, determine whether it was readily accessible to individuals with disabilities. With any program back then, that concept applies.
But eventually the entire program is supposed to be accessible. No one's ever defined 'eventually' except in the following way: If new construction is done, they have to make the entity accessible. If alterations are done, they have to make the entity accessible.
Let me put it in concrete terms: the lottery. Let's assume that in 1990 there were 1000 lottery outlets in Pennsylvania. When the regulations were promulgated, you had to look at the lottery and say, when viewed in its entirety, is it readily accessible? So you have to say, of that 1000, how many were accessible, and where were they located. You'd have to do a geographical distribution. Let's assume for the moment that 333 were accessible and they were distributed geographically equally, so people could agree that when viewed in its entirety, the lottery was accessible.
Let's assume that in 1993 there were another 100 lottery outlets, so it's up to 1,100. Well, those new 100 all have to be accessible. It's not a case of 'You would think.' They have to be, because you are no longer looking at an existing program; these are not existing outlets, these are new. The 1,000 on January 26, 1992, were existing. But the new ones in 1993, they weren't existing in 1992.
The government has to make sure that when they get new programs on board, those programs are accessible. Not just when they're newly constructed.
Very few people understand Title II program access. If you did a survey, most people would say that if the new 100 lottery outlets in my example were all inaccessible, that would be okay because the program may still be accessible when viewed in its entirety.
Well, if that's the case, then we're never going to get 100 percent accessibility. And Congress intended for us to get to 100 percent accessibility.
Take a homeless shelter that existed in 1992. How do they make the shelter program accessible? One way may be to build a ramp or a lift, another way may be to give vouchers to a hotel. Let's assume they start a shelter in 1995. Well, they just can't start an inaccessible shelter. That's a new program, it was not an existing program in 1992. 'When viewed in its entirety' is limited to existing programs as of January 26, 1992.
Even then, all services must be provided. That point is incredibly widely misunderstood.
You talk a lot about segregation.
The Helen L. lawsuit was intended -- besides getting some people out of nursing homes -- to get people to begin to talk about segregation. Even though Congress talked about segregation, it's rare to hear people with disabilities talk about it.
People who cannot get into that restaurant and eat with me, they're discriminated against, as am I when I can't have lunch with them. When people can't sit next to other people in the movies, or they get put in the back row, that's segregation.
People with disabilities are still segregated, in nursing homes. And I don't do much education law, but I am shocked that we still have schools in this country segregating kids based on disabilities.
People have a right to be segregated if they choose. If people want to go to a school where only deaf people are, or where people only use ASL, they have that right. They cannot be made to do that. Under Title II, the state cannot make them do that. In Title III, it's the private business; the restaurants and stores cannot make themselves inaccessible.
It has to be truly a choice. Sheltered workshops are a great example. If you don't have supported employment, and job coaches, then to say someone wants to choose sheltered workshops -- if that's the only thing that exists, it's not a choice.
Same thing on nursing homes. There's so many people living in nursing homes right now solely because there are no accessible houses, no accessible services such as attendant services. To say that people have chosen segregation -- they may not have any choice. They want to live. They want to just stay alive.
Say you want to go to an art show with other people, who are blind, and the museum says, 'Look, we would be glad to have a special program oriented specifically towards blind folks.' They can do that, but a blind person cannot be made to only go to that. The blind person has a right to go to any other show. And the museum must have reasonable accommodation to that other show so there is equal access.
You say that assisted suicide is against the Americans with Disabilities Act?
Surveys show it. When people with disabilities go to their doctors, doctors cringe; they can't believe someone lives like that.
People with disabilities are not going to be given the same suicide prevention interventions as non-disabled people. That's the more critical point.
If a 30-year-old non-disabled person goes to their doctor and says, 'I just can't go on anymore. I've lost my loved one. My life isn't worth anything. I want assistance in committing suicide,' the doctor would do everything possible to talk him out of it. There would be therapy, counseling, medication. The unstated thing from the doctor's point of view is that the AB's life is valuable.
If a 30-year-old person with a disability comes in, says exactly the same thing, doctors don't provide the same suicide prevention. That's discrimination under the ADA because it's based solely on disability.
If physician-assisted suicide were permitted, the discrimination against people with disabilities would be much worse. Doctors are going to go, subtly or not so subtly, out of their way to urge people with disabilities to off themselves.
