Report of the CIB Expert Seminar on
Building Non-Handicapping Environments, Budapest 1991
Marilyn Golden, Disability Rights and Education Defense Fund, U.S.A.
(The text was transcribed from her talk.)
I'm here to talk about disability civil rights laws in the United States, that is laws protecting people with disabilities from discrimination. What is discrimination? Discrimination is when you're treated differently than a non-disabled person would be in the same circumstances. If a non-disabled person can enter a building and you can't due to architectural barriers, that's discrimination. If you're deaf and you cannot make a phone call to the doctor and there's no telecommunications system there to help you, that's discrimination. If your child is given an inferior education in a separate school just because she can't see, that's discrimination. Every country discriminates against people with disabilities along similar lines. I want to tell you at least a few examples of discrimination that we have.
A few years ago at one of our independent living centers, for every wheelchair accessible apartment or house that the organization found there were 50 wheelchair users who needed one. A couple of years ago in one of our newspapers there was a story about a zoo in the state of New Jersey. The zoo-keeper would not allow a group of children with Down's Syndrome to enter. He was afraid they would upset the chimpanzees.
The disability movement in the U.S. has achieved a series of laws against discrimination. The best and most important is very recent, the Americans with Disabilities Act of 1990. It would be untrue to say that these laws have eliminated disability discrimination, however we have moved forward greatly with these laws. It doesn't solve all our problems and neither I nor anyone else would pretend that it does. What we in the United States lack in particular are important social welfare benefits that many European countries have.
The first important predecessor to ADA was passed in 1973, our Rehabilitation Act, a section of which said that the federal government and any entity/organization receiving money from the federal government can't discriminate against disabled people. This meant greatly increased opportunities for disabled people in universities. For example, people who are deaf can often get sign language interpreters to interpret for them in their college classrooms, for free. Government offices have to provide written materials in forms that can be used by people with visual impairments: formats like Braille or large print or on cassette tape.
In 1975 the United States passed the Education for all Handicapped Children's Act which stipulates an education for every disabled child in the most integrated setting appropriate for the child. As a result of this law many more disabled children are in regular classes. If children need special services like speech therapy or mobility training those services are provided for them in a regular school. The concept of this law is that every child who is disabled has an individualized education plan developed for him or her. The plan is developed by a team of teachers and professionals from the school and the child's parents.
In 1986 the Air Carrier Access Act was passed in the United States. The Act states that airlines can't deny disabled people to use their public transit services. Some of you know that we had a very interesting incident this week where the need for a law like this came to life when Lufthansa had announced their intention to refuse to allow me to fly from Frankfurt to Berlin, under conditions that were discriminatory. Like all good disability advocates, the Frankfurt disability community lost no time going right into action. They got the press interested very quickly and the press called Lufthansa and Lufthansa changed their mind. I should add that the American law I mentioned has helped a lot with another important problem, the carrying of batteries needed by people who use motorized chairs.
The Fair Housing Amendments Act came about in 1988. The housing act only covers new housing. It prohibits discrimination in the selling or renting of housing. For example, landlords would often refuse to rent an apartment to a mentally retarded person, or a person who at one time had a psychiatric disability. That's no longer legal. Also, this law made it illegal to establish local laws that restrict establishing small group homes for people with disabilities that leave institutions. The law requires landlords to allow you to modify your rented house if you wish, at your own expense, which was often denied before. And last, but not least, it requires new multi-family housing to have certain basic accessibility features.
In housing, as in employment under the ADA, landlords and employers still have a tremendous amount of discretion over who they rent to or hire. These laws are not quota laws nor do they require a preference for disabled people. What they do is say that the landlord or the employer can't reject a person solely due to their disability. That's not just words, it's an important difference. You may wonder, How do you prove that was the reason they rejected the person? We have experience with this in the United States because we have other civil rights laws, for example, protecting women and people of color. We have found that it is not easy to prove nor can we do it in every case, but you can prove it often enough to move the situation forward. Sometimes there are a series of disabled people, not only you, who have the same experience with a certain employer or landlord and if there are more people who are claiming it, it's easier to prove.
Regarding architectural barriers there are three different situations: 1) new buildings, 2) buildings that are being remodelled or altered, and 3) existing buildings that aren't being changed in any way. New buildings have to be accessible. There is a small exception in very small buildings, in buildings under three stories or under 3000 square feet (Editor's note: equal to approx. 330 square meters) per story. They don't have to put in elevators but they have to do everything else. That doesn't hurt us too much because most brand new buildings, even little ones have elevators anyway. When buildings are remodelled or altered, the altered area has to be made accessible. In addition to that, up to 20% of the remodelling costs has to be spent, if necessary, to provide an accessible pathway to the altered area. For all the existing buildings, restaurants and stores that aren't being remodelled, we have a modest standard, not a real high amount that has to be done. But every one of them has to do something. What they have to do depends on how big and wealthy they are, basically. A little corner store might just have to put up a little ramp. But a big, fancy hotel would have to spend a lot more maybe building a big ramp or putting in a lift or remodelling a whole bathroom, etc.
ADA also covers transportation. The biggest point here is that all newly purchased busses, regardless whether their operator is private or public, must have lifts. With rail systems, at least the most important stops have to be modified over a period of time. There was only one part of ADA that went into effect very fast and that is the requirement that transit operators make any new bus accessible. That went into effect 30 days after the law was enacted because the entities it covers are the large transit operators who were watching, they knew about the law, and there was just no need to wait around. And it was a nice symbolic victory for us because we had worked so hard on that issue to get it right away. But for other parts of the law the time limits vary a lot sometimes 1,2, or 6,7 years even For example, making accessible very old subway stations, that takes a longer time.
ADA covers public places. This includes many kinds of places such as: restaurants, stores, hotels, doctors offices, theaters, private schools, social service agencies, museums, and recreation sights, etc.. Owners and operators of these places cannot refuse goods and services to a disabled person. When I say public place, I mean a privately operated public place. They can't make you have to do something special that other people don't have to do, like bring an assistant, for example. If they have to provide a disabled person with something that costs money for them to participate, they have to do it up to a certain point. For example, a doctor might have to provide a sign language interpreter for a deaf person who is coming to see that doctor. Any group that gives tests or exams that lead to a certain profession must make their premises accessible. Examples are courses for a real estate license, for law, interior design.
I told you a lot of things laws can do, now I want to tell you what these laws can not do. There is one main thing these laws cannot do: they cannot implement themselves. Passing a law is not the end of a project, the law is only a tool. It is an extremely useful and important tool, but it is still only a tool. Sometimes people make the big mistake of thinking that when a law doesn't automatically implement itself, it was a mistake to spend the trouble to get the law in the first place. People who think that, misunderstand the nature of the law. No laws ever go instantly into complete 100% implementation.
The ADA doesn't levy fines but there are other ways to enforce the laws. A person who has encountered discrimination can file a complaint with an agency of the national government which has to be investigated and settled. The only responsibility the disabled person has in that situation is to file the complaint, and that's pretty easy to do, sometimes you don't even need to write it down, you can telephone it. I wish I could say the investigations were perfect and happened quickly that's not the case, but again, it's enough to move forward. They don't have the burden of proof; they say what happened and an investigation is made into the facts. A law suit in court is something that can be done after this, if the complaint process is not satisfactory.
The ADA doesn't require infinite, limitless things of private businesses. Each part of it is carefully crafted to be fair to both disabled people and businesses. That's a hard line to draw but I think the result is that we did it pretty good. So each part of the law has it that the covered entity has to do things up to a certain point. The requirements are reasonable and now that they are law, they have to do it. We can assume they're not always going to do it the way we want and then some complaint has to be made.
We had to change the image of disabled people from caretaking to civil rights. We had to convince society and Congress that we wanted to do more than watch TV all day. We want to raise families, shop, go to church, everything. Instead of being a drain on the economy, we want to be productive, contributing citizens. We wanted to get away from professional begging and instead insist we be given what we deserve. In fact this was one of our main arguments that society would save money when we work and are active and add to the economy instead of existing solely on benefits.
We said that the purpose of the ADA was to look to the future. It might be too expensive to remove every single barrier today but it makes sense to set up a policy where everything new was completely accessible. We argued a lot that it would save money for disabled people to be taxpayers instead of being dependent on the economy. We talked a lot about the harms of discrimination. We argued that the things we wanted to do were things already done in previous laws, nothing unexpected or unknown.
Though achieving ADA was a big battle, it is important to understand that this wasn't our first civil rights law, as certain parts of society had already gone through this. And also, different states, among our 50 states, may have had good laws in some of these areas already.
ADA was first introduced to Congress in 1988. We did not push it very hard because it was an election year. After the two presidential candidates were nominated, we played one off the other. We did the same thing that if you're not united, your opposition will do to you. We told George Bush's campaign that Michael Dukakis's campaign was about to endorse the ADA any day. However, that was not true. Actually, we were telling the Michael Dukakis campaign not to endorse it. So in a couple of George Bush's speeches he referred to the right of disabled people to be integrated into society. Those statements helped us a lot to get Republican endorsement in Congress. In order to get the Democrats we worked with one of our best friends, who was a Democratic leader, to re-write the bill. The re-written bill which was still strong was now defendable. We made it a little more similar to some of our earlier laws, and the Democrats had already supported those earlier laws so we could get them to support this law because it was similar. And that's how we got the Democrats.
I'd like to talk about the grass-roots activities we did. Marches and demonstrations and things like that were very helpful and important. Sometimes we could do this with a very small number of people. I've been telling a story about a Congressman from Los Angeles that was going to support some amendments that we didn't like. I called up someone I knew who would do this and I had her just get three or four people to go to the Congressman's office and they went in carrying signs and said that they were not leaving until the Congressman agreed not to support these amendments. They didn't mean what they said - they weren't really going to stay until he agreed, perhaps just a few hours - but it worked. In a couple of hours the Congressman called from Washington back to Los Angeles and talked to those individuals on the phone and told them he had no intention of supporting any amendments; no problem! So the point is that you don't always need large numbers.
At one point we actually deliberately delayed a particular committee vote until after a certain demonstration. It was important that we got letters written and individuals lobbying their elected officials, both of those two things, by people who were from the local cities that elected the officials, not the Washington lobbyists, but their own constituents who vote for them. If it was only the Washington lobbyists it would not have been enough support we couldn't have done this big a thing. It had to be their own constituents whom they had to listen to otherwise they wouldn't be voted in.
One of my jobs was to be in touch with the community in each state so that when we needed something from that particular member of Congress I could contact them directly. Also we had a huge mailing list of disabled people across the country and we would mail people updates about what was happening and what we wanted them to do. I had a network of 25 very strong and qualified leaders across the country who did a lot of the same work in their regions. They each had to be the kind of people that bring people in as opposed to the kind of people who like to do everything themselves. We had a special number that people could call if they wanted to send a telegram to their member of Congress. We printed over a million New Years postcards which said: To Pass A Strong ADA. And we distributed them for free to disabled people all over the country to send to their member of Congress. We had at the very end when the bill went to the floor of the House of Representatives a big network in every state to get lots and lots of phone calls (hundreds of thousands in just a few days) to the Congressperson's office.
One thing that happened during the ADA process is that the people who liked more to do demonstrations and street actions worked a lot more with people who work on policy and law. That didn't happen at the beginning but by the end it was happening. The important thing I learned was that really truly neither side could have succeeded with out the other. Without the street actions, the people who do the policy work could never have gotten this strong a law. If the street demonstration people didn't have the policy people there would have been no one to work out the change that they had made more possible.
At one point we got the government to do a series of hearings across the country, and the government wanted to have them in out of the way places but we made sure that they were in places where we were strong. And we made sure the rooms were full of speakers and people were doing street theater and it was a big show of protest. It was very important that we could back up our threats so that if we said the community would do action, then there was action. If we said we would lobby, then we did lobby. We delivered on our promises. If you deliver, then the administration respects you as a powerful political force. If you don't deliver, they know you're just hot air and they don't have to worry about you.
ADA could not have come about without building powerful coalitions. The work on this started long before ADA. The main way you establish a big coalition is to choose an issue such that as broad a group as possible will have interest in that issue. You have to know the needs of other disability groups besides your own. For example if you pick an issue that you want to pass a law that you want to get more ramps in buildings, the groups that will come to your coalition are wheelchair users. On the other hand, if you formulate your issue that you want to have a law to construct buildings that have ramps and assistive listening systems for deaf people and appropriate warning systems and alarms for blind people, more people will come to your coalition. The other thing is that you have to find common areas of agreement, even if you may disagree on other issues with these groups. All you have to agree on is a specific set of issues that you're working on. The process of working together will educate them and later they will agree with you on more issues.
Starting with our first civil rights law in 1973, our movement has a long tradition of every different disability group working together: mobility impaired people; visually impaired people; hearing impaired people; mentally retarded people; people with psychiatric disabilities; people with hidden disabilities like epilepsy, cancer or diabetes; and people with AIDS. In the United States there's an important new group, people with environmental illness. People who have very bad physical problems due to chemicals in the environment. It also means every kind of group, traditional groups as well as movement or more activist groups. There are many reasons for this, one is that with more groups you're stronger. Another reason is that if you're not united, the other groups will end up attacking what you do. And then the government and the opposition have an excellent excuse not to give you what you want. They just say, Well they don't know what they want. So you try to bring as many people and kinds of groups together as possible. Some organizations won't come even though you ask them, you should try to get them, try to encourage them to come. But if they won't, you just work with whoever does. If you're doing the right things and moving forward the other will follow later. Once the train is actually leaving the station, they're going to want to be on it. This unity enabled us to do some interesting things. It helped us get around between the split between traditional disability organizations and the newer, more activist organizations.
We had to get other civil rights groups, like people who work for the rights of women and other groups to realize that disability rights was as political and important as these other groupings. One excellent argument was guilt. For example, telling the women's movement that they weren't addressing the problems of disabled women. The main thing was to work with them rather then expect them to figure it out on their own. Like everything else it took some work and some time, in fact, some of us had to put in time working on their issues so that when we needed them they would work on our issues.
A lot of the churches supported us on the ADA. I would say that over time you would have to educate them that what you really want are your civil rights. Maybe they need to understand that you'll tell the media that you'll like them more if they help you on civil rights than if they take care of you. Which raises another idea which is that you have to figure out what the group that you want to work with, what is their interest and put that in your program.
I know it would be very easy to argue that a law like this is not possible here because your country is so different. You may feel that you don't have a lot of pre-conditions ready that we had because of our earlier work but many incredible and unpredictable things have happened in history. In 1988 when the first ADA was written and published, some of our smartest leaders thought it was ridiculous, not to mention impossible. They were convinced that those of us who thought we could do it were on drugs. Similarly, two years before the Berlin wall fell people thought it was completely impossible. So keep that in mind and go for it.