The Implications of ADA for Disabled People
"Legislation for Human Rights"
Stockholm, Sweden, 24 August 1998 by Judith C. Heumann, State Secretary Today, while I very much respect many of the programs that you have, such as STIL and other agencies providing various types of support for disabled individuals, I am struck by the fact that you have not yet promulgated any civil rights legislation in connection with disability. It is almost as if there is a premise that it is wrong to discriminate and therefore discrimination doesn’t occur. But, we live in a world where there historically has been a bias against disabled individuals and unfortunately Sweden is not lucky enough to be free from this bias. In my job in the Department of Education in Washington I have met with many delegations of Swedish people who are studying whether or not there is a need for anti-discrimination legislation in Sweden in Washington. I have said to them and I say to you today that it is time to stop studying and to start legislating. I hope that these studies and your activities here today will enable that to happen. Today I will speak about the reasons I feel so strongly about the need for civil rights legislation. I will also give you a very quick overview of what has happened in the United States in connection with civil rights legislation. You can get more information on this legislation at the web sites of the Federal Agencies that have responsibility for administering civil rights legislation in the United States. There you can get information about the statutes, about some of the court cases and complaints that have been filed and the results of some of the court cases and complaints. Very early in my life, my parents and I learned that it was critically important for us to be strong advocates and that if we didn’t articulate problems and fight for solutions most people around us were not going to do it either. My parents immigrated to the United States from Germany in the 1930s to flee religious discrimination. They believed in the American dream, that if you worked and studied hard you would benefit from what the society was supposed to offer. I was the first of three children. I had polio in 1949. Pretty quickly in my life my parents began to realize that there was something wrong with the American dream if you had a disability. When I was about two years old, a social worker suggested to my parents that I be placed in an institution. My parents decided that that was not what they wanted for me, and that they expected me to be able grow up and live a productive life. When I was five years old my mother took me to the neighborhood school and the fight for my education began. The principal informed us that because I was in a wheelchair I couldn’t go to school. A teacher came to my house twice a week for a total of two hours a week until the middle of the fourth grade when I was allowed to go to segregated classes for disabled children. There were many disabled organizations in the United States at this time. They were organizations for disabled people - basically charity organizations that sought medical cures and provided economic support for basic technology such as wheelchairs. Most of the organizations were not doing advocacy work. At the same time the women’s rights movement and the movement of African Americans were developing. These movements were a very important learning experience for many of us who had disabilities. We were learning from them that discrimination has very strong adverse effects on individual people and on the society as a whole as well as that discrimination does not go away by itself. In 1964 we saw the passage of very strong civil rights legislation that prohibited discrimination against individuals on the basis of race. Disability was not included at that point because the disability rights movement was not a strong movement and therefore disability had not yet been identified as a basis of discrimination by the population at large. In the late 1960’s we began to see a much stronger disability rights movement emerge across the United States. Much of it at the grassroots level, with the development of independent living centers and other organizations controlled by disabled persons . The disability rights organizations were basically beginning public discussions on discrimination and disability. People with disabilities were beginning to spend more time amongst ourselves as disabled people. We were beginning to recognize that we were not the problem; that the problem was that society had decided a person with disability was not a valued person. Therefore the society developed in a way that excluded us, and at the same time made us feel guilty about the fact that they were discriminating against us. Some facts about the infrastructure that show the discrimination that we were facing as persons with disabilities as late as the 1980’s are: In 1967 the first national piece of civil rights of legislation in the area of architectural barriers requiring that buildings being built with federal dollars had to be accessible was passed. Between 1973 and 1990 numerous pieces of legislation were passed. One of the most prominent pieces is the Americans with Disabilities Act. It was particularly important because it reflected the development and growth of the disability rights movement in the United States. Disabled people started working with legislators on this law in 1985. There have always been a number of legislators who have been willing to work within the disability rights community to help advance issues in the congress. This bi- partisan support for many of the disability rights issues has been critically important. In 1985 a number of pieces of legislation prohibited discrimination in programs that get money from the Government, but we did not have any national legislation which was looking more broadly at the public sector. We had no federal legislation that prohibited discrimination in private companies against disabled people in the area of employment. We had no legislation that prohibited discrimination in restaurants, movie theaters, hotels, or buses. We identified a need for strong anti-discrimination legislation in all of these areas. Our next step was to convince the American people and legislators that this type of legislation was needed. We had to be able to convince them that discrimination existed across the country and against people with all types of disabilities and that it was incumbent upon the Federal Government to intervene and to say that it was the policy of the United States Government that discrimination would be illegal against disabled people. We had to go further than just saying that discrimination would be illegal. We had to be quite specific and to articulate through regulations what had to be done in order to remove many of the barriers facing people with disabilities. This meant that we were going to have to explain to the American people and legislators what our lives were like on a daily basis so they could understand what had to be done. Between 1985 and 1990 there was a very strong grassroots movement in the United States which culminated in congressional hearings in 1989, where both representatives from the House and Senate held days of hearings where people who had all types of disabilities, and their family members, were invited to come before the Congress and testify about discrimination and how discrimination was adversely affecting them. This gave an opportunity for discussions at the local and state level which was critical because it allowed people throughout the United States - disabled individuals, the general public and state legislators - to become more aware of the issues. When the legislation began to move in 1989 there was support from the Congress because the Congress had been convinced that this legislation had to be promulgated. The legislation was passed in 1990. This particular piece of legislation is now eight years old and it prohibits discrimination in the areas of employment, public accommodations, and transportation, it requires that there be accessible communications for deaf individuals across the United States and a number of other miscellaneous issues. Between 1990 and 1998 we have not seen the problems of disabled people go away, but we have seen that the infrastructure of the country has been changing. Both Governmentally and non-Governmentally funded facilities are now required to be accessible. We have seen ten technical assistance centers established that provide information on the American Disabilities Act, and on how to effectively implement it. We have seen complaints filed by disabled individuals with agencies like the Department of Justices, the Equal Employment Opportunities Commission and in the courts. People have used these avenues reasonably to complain about companies when they have been discriminated against and the companies have been unwilling to take action to remedy that discrimination. I think that it is important that we have tools to make the companies do the right thing. Another important aspect of change that has gone on in the United States is that disabled people have become much more involved in politics. Disabled people are running for political offices and are involved in political campaigns. For example, President Clinton was elected in 1992, because there had been very strong support from different groups across the United States, among them disabled people. When he won he went back to the various groups that supported him and got them involved in the running the Government. There are now about 40 disabled people in various political positions in the Government, some are in positions like myself, where a substantial amount of our involvement is in enforcing laws in the area of disability, others have jobs in which they do not work in areas exclusively dealing with issues effecting disabled people, but where issues effecting disabled people are a part of the work that they do. There are continued struggles that are going on as we work both to enforce the laws but also to look at issues of discrimination more broadly. We are spending more time in the United States focusing on issues and how they effect disabled people. In the area of education we are focusing on assuring that disabled children are getting quality education, that they are staying in school and graduating from school, and that they are going on to universities. The laws now prohibit discrimination against disabled people in the universities. We are working to assure that the universities are not discriminating against disabled individuals and that disabled people are moving into various professions so that they can come out and get jobs. Anti- discrimination legislation and civil rights legislation must come to Sweden as well as to most countries around the world since no magic wand seems to have been waved across any country and truly allowed equality for all people. You have almost a 50% unemployment rate for people with disabilities in Sweden. I dare say that the 50% of the disabled people who are unemployed in many cases want to work, just as disabled people want to work in the United States. In Sweden you have advantages that we don’t have in the United States. You have a national health care system where everyone in the country has health care. In the United States where we have legislation which says companies can’t discriminate against a disabled person in the area of employment, a disabled person may in fact get a job at a company that does not offer health insurance and may be unable to take the job because he can’t get health insurance. With the infrastructure that you have in place here in Sweden due to your programs and laws strong anti discrimination legislation should allow you to make gains more rapidly that we have seen in the United States. I really encourage you as disabled people and particular as allies to be much more outspoken about what discrimination means for you, how it adversely effects you and your families, and what it means to the society when 10 - 12% of the population is devalued and prevented from making equal contributions. It is a tragedy that disabled people have been relegated to second and third class positions all around the world. Today you are going to be hearing about what many of you have been working on - a position that says discrimination is no longer acceptable. Our efforts will be to remedy this and to move forward to advance civil rights legislation in Sweden and around the world. Thank you very much.
Twenty-five years ago I was very excited about many of the programs in Sweden that were providing basic assistance for disabled people thar enabled them to live more integrated in the community.
In the 1960’ s we began formulating our positions; we were becoming empowered as disabled people. We also began to make stronger linkages within the broader civil rights movement.
Our sponsors
