Seminar on Human Rights for Persons with Disabilities from a North and South Perspective

Stockholm, Sweden 23 August, 1998

Judith E. Heumann, Department of Education, USA

This seminar on human rights and disability is very interesting because we have the development of many organisations though out the world that are working within the disability rights movement and we have recognised areas we need to work on. We need to focus more on what each country is respectively doing and to look at ways that we can benefit from the different political and philosophical approaches that countries are taking. We need to look at the actual work that is going on within those countries and to learn about strategies that those countries are taking. We have to have some meaningful discussions about where we feel we are being successful, what we believe success is the result of and what we believe needs to occur in order to allow us both in our individual country and across the world to be a more powerful movement.

It is particularly important in the disability rights movement to have greater opportunities both formally and informally for communication because our movements are relatively small in all countries. Many of us are basically working in this everyday and feel like it is all consuming. If we can step back and look at the overall quality of life for people with disabilities in our respective countries I feel that it is fair to say that we have not made anywhere near the gains that we should have made given the amount of work that many of us are putting in. It is significant because the barriers and causes of the barriers within our respective countries are so deeply seated.and because in many cases we are not really part of the real infrastructures of change, the power structures, within our respective countries that can have the types of influence that is needed to make things happen. We are continually trying, and I think successfully, to create movements within our countries that are giving people the encouragement to find their own voices and to be able to articulate for themselves what their individual perspectives are about human rights, what their individual perspectives are about where they are and what their dream is for where they wish to be. At the same time that I think we are very much speaking as a movement in saying that individual voices by themselves are really not powerful; that there is a need for the voices to come together, cross-disability, cross-race, cross-religion and cross-countries to be able to do a more effective job. I live in the United States and am an Assistant Secretary for the Office of Special Education and Rehabilitative Services in the Clinton administration. It is a high level position which I think would be defined as a sub-ministerial level position. It is a presidential appointment with confirmation from the United States' Senate. There are relatively few of those positions within the government. My area of responsibility is education for disabled children and rehabilitative services which in the United States are programs that exist within all the states to assist disabled persons in obtaining education, training, employment and the area of research.

In this job I have learned that the degree of ignorance and prejudice that exists on the part of people at my level, and below and above towards disabled individuals is just overwhelming. In part it is because of the most simplistic reasons: the lack of exposure from them to us and the historic values of what non-disabled people have believed is appropriate for disabled people. When we come forward with our agendas such as equality, human rights, civil rights, access to education and transportation, housing and employment, it challenges the very fabric under which we have existed in the United States; the premise that it is the responsibility of some to take care of others. When those who have historically been taken care of no longer wish to be taken care of and basically are no longer grateful for this charitable approach many non-disabled people react with hostility. I use the word hostility because that is what we have experienced.

In my present position I have responsibility for the education of disabled children in the United States. In the United States education is significantly the responsibility of the state and local communities. Between 1967 and 1975 there was an acknowledgement of the fact that disabled children were not receiving an equivalent education to non-disabled children. At that time in the United States there were about one million disabled children that were not in school at all and many millions of others that were not receiving a comparable education to non-disabled children. Due to this situation a federal law concerning the education of disabled children was passed. The law is premised on a number of points. One is that non-disabled children have the right to a free and appropriate public education and another is the fact that parents need to be given substantial rights in order to assure that their children are able to benefit from education. The law provides protections for disabled children that it does not provide for non-disabled children. Over the last 23 years parents have been learning that their child does not just have to be somewhere in a classroom, but that the goal is really to get their child in the least restrictive environment or integrated with non-disabled children absolutely to the maximum extent which for many people is all day, five days a week with the kinds of support that a child may need and with adequate training of regular teachers and special education teachers.

There has been incredible backlash from unions, from administrators and in some cases from parents of non-disabled children, but not as much from the parents as from the organised educational community. During the last five years I have spent an inordinate amount of time working in this area and am really learning about the depths of the bias that exists in this particular area. Quite frankly, education, in my view is one of the most critical areas that our movement needs to address because the inability of disabled children or adults to get an education which is of quality results in the inability to obtain jobs that are commensurate with the employment in their country. It impacts on people's ability to earn money to be able buy or rent a home, buy food and take care of families. Education is very pivotal and yet when I travel around the country and visit schools and talk to parents and teachers I realise that while things certainly have gotten better over the last 23 years, it is only a relative better. There no longer are one million children out of school, all children today are receiving an education. But the quality of the education when compared to the quality of non-disabled children's education within the same community is in many cases quite different, the expectation of the teachers in many cases is quite different and the expectation of the state is quite different. You can see it in a number of ways. For example, most states now have a state assessment or a state test so that all children take a standardised test to see if they have progressed in math and reading. But you find that large numbers of disabled children are not required to participate in these standardised tests. Now what is the impact of these children not participating? The impact is that no one is being held accountable for the education of disabled children. If they are not being successful then they are not going to be able to progress to the next grade or be able to graduate from school.

I use education as an issue around human rights because the denial of a quality education for disabled children disadvantages them both from an academic and a social perspective. Another critical issue is that when disabled and non-disabled children are not going to school together there are many very powerful messages being given. Even if they are in the same school but not in the same classroom there are many very powerful messages that are being given. Those message continue to be one of class; of one group being better than the other, or one group needing to be taken care of by another group . This lack of equality and knowledge about differences and how we all can benefit from education and what its purpose is has adverse effects on disabled people and on the whole of society.

Another issue in our country in the area of education that is symbolic of many other issues is that when this law came about the Federal Government said that it would provide additional money to state and local communities in order to educate disabled children. In my view this is a type of blackmail money because what the law says is that if it costs more to educate a disabled child, then the federal government has the obligation to pay the excess cost. According to the law the Federal Government should pay up to 40% of the excess cost to educate a disable child In fact the federal government has never paid the 40% of the additional cost. The educational associations and state governments have implied that if the federal government is not giving the 40% then that they do not have the same obligation to assure that disabled children are receiving the same level of education as non-disabled children.

From my perspective, I have learned that some of these policy issues are very complicated and in many respects our movements are just beginning to be sophisticated enough to participate in some of these discussions. It is critically important for us to look at issues of independent living and human rights. I personally believe that if we achieve human rights to the degree that we define it as something that allows people equity and equality within their countries than independent living is something that will have been achieved. The words are different, but I believe that independent living is really human rights, the achievement of full human rights.

We talk in the Unite States about the importance of education, the importance of getting disabled people to receive various levels of education and degrees of experience to be able to work in the infrastructure of the local, county, state and federal governments, the infrastructures of the business community and NGO community. At the same time we have to be working on the development of our own movement. One of the obvious reasons that we have not yet achieved our level of success is because there are still so many millions of people in our respective countries that have not valued their own life the way non-disabled people value their life. I think that we have in many cases accepted what the systems have said we have a right to. The extent that we accept what someone else says is good enough for us makes it more difficult for us to achieve our goal. I think there is a need for tension, a need for confrontation, which may be a very US approach. I think there is a critical need for disabled individuals, parents, friends and allies to feel that tension and confrontation, is appropriate.

We have a responsibility to speak out against individual and collective oppression. From our movement's perspective the denial of human rights results in institutionalisation, isolation, discrimination, unemployment and lack of economic opportunity. Obviously these conditions make us the poorest of the poor. In the United States the many pieces of civil rights legislation that have been passed in the last twenty years have been very beneficial and are changing the infrastructure of the country. The changes in the infrastructure has meant that the streets have more curb cuts on them, buildings are more accessible with more ramps and more accessible bathrooms, movie theatres are more accessible, and by the year 2001 every public bus in the US will be accessible. But here is where, I believe, the other glaring disparities come forward. If people have not been able to get the quality education they need and or are being denied jobs because of disability either entry into or ability to advance then people's economic ability is being thwarted.

Studies in the US are reflecting this. Polling studies are very popular in the US. In polling, all sorts of people - primarily non-disabled people - are asked questions about products, issues, political leaders, or whatever to see what the general population thinks about the products, issues, political leaders or whatever. In some polls they also ask questions about education, transportation, and quality of life. The Lou Harris Agency is a well-respected company that carries out such studies. There have been three Lou Harris Polls where 1000 disabled persons were scientifically selected and asked about their quality of life. When you look at the laws and the responses to the questions in these polls it shows that the changes that the law should be resulting in have not yet occurred, that disabled people are still participating in day-to-day life much less than non-disabled people in their community. We don't know the full answer to this yet but it will be something that we certainly will be looking at more closely.

For me the value of what will happen in the seminar is to get a better understanding for the struggles we disabled people are working with in our countries, our successes and problem, and of the ways we are trying to deal with how we can have a greater impact. Education and how to get disabled children in the regular educational system is being discussed in countries all over the world. When I hear the discussions it seems that the opposition from teachers and administrators and in some cases families of non-disabled children to having disabled children in the schools or the regular education classroom is very similar. Opposition is based on money, on the feeling that the disabled children are going to drag down the level of learning for the non-disabled children and basically on the feeling that if you have scarce dollars or resources you should not be spending scarce dollars and resources on a population that you really don't believe will benefit in the end.

Thank you.