25 years of Independent Living in Sweden
Panel: Independent Living abroad – global perspectives,
speech by Judith Heumann 08.11.28.
I want to give you a little bit of information about some of the activities in the US because they relate very much to the international work that all of us up here have been doing. Let me also mention that Ed Roberts who was one of the founders of the Independent Living movement passed away in the 1990’s. We talk about him but he died in 1995. Ed was a post-polio quadriplegic, as you might have seen in the slideshow from ULOBA, but Ed really reflects all of us in this room because he was an individual who would not accept: No. He had polio when he was about fourteen. He had been a football player in high school and then he was a quadriplegic and using a respirator. His mother and he would always tell the story about how the doctor had told his mother that it would be better if he had died. As he got older, became a political activist and testified, he would say: I come before you as an artichoke, prickly on the outside with a good heart on the inside.
I think that was something many people resonated to. The medical profession was basically saying that if you were having a significant disability one could assume that you could not live a life of dignity. Myself, and I think Kalle and Adolf, we all have similar stories to tell about what the medical profession thought about our potential. For me, the Independent Living movement, the self-help movement, whatever terms people are using in different countries, speaks very much to the issue of refusing to take: No, the issue of empowerment, the belief that we can do really anything if barriers are removed. We are not the problem. The society is. That is very critical because one of the issues in creating a more powerful movement is the need to be able to get rid of internal oppression. I believe that a lot of the issues disabled people face regardless of the countries that we live in, and I think it is exacerbated by poverty, is that we do not really believe that we can contribute equally to others.
In poorer countries or in poor communities, where oppression has limited people’s opportunities, it can in some way be seen as logical that people can be overwhelmed by the problems they are facing. What I think is very exciting, about what has been happening internationally over the last 30 or 40 years, is that, regardless of the countries we are working in, there is an emerging disability rights movement from the most rural communities and countries to urban communities. That we believe that individuals can and must become equal members of the societies they live in is really the driving force behind all of our efforts. The ability to work with each other, as you have seen today has been very helpful in allowing us in the western world to develop what we call the Independent Living movement. People from western countries have over the last 30 years or so been able to read about each other, visit each others countries, do analytical work on what different policies have been developed and the impact of those policies. With the advent of organisations like Disabled People’s International and other international groups, The World Blind Union, The World Federation of the Deaf, Inclusion International, Rehabilitation International, these organisations too have been able to work with diverse populations of individuals with increasing efforts going on in poor countries.
The passage of the UN Convention on the Rights of Persons with Disabilities is a tremendous statement about the success of the disability rights Independent Living movement. How this convention was passed in a shorter period of time than really any other UN convention has been passed and with a group of individuals who many around the world feel are hopeless, helpless cripples. It was pretty phenomenal to experience, hundreds of disabled people from around the world coming to the United Nations a number of times a year over two to three weeks per visit, and to see the impact of in some way a unanimous voice. The unanimous voice really said that discrimination exists. Discrimination must end and it must end on behalf of all people of different types of disabilities. That to me this is really a partial outgrowth of the Independent Living movement because many of the people, who were the leaders in countries around the world that participated, are involved in self-help organisations that had been making slow but continuous progress in their countries.
Being involved in the Berkeley Centre for Independent Living was a very interesting part of my life because. We called ourselves a rag-tag-group, a small group. We were educated people and I think this is another important issue to look at. The leaders of the disability rights movement in many parts of the world have had the privilege of having education. For many disabled people today this is something they still do not experience. I think we need to recognise that, like education critically improved the movement for women around the world, education for disabled people is also critically important. This is one of the values of the UN convention and I think one of the values of the Independent Living movement.
In the US from the very beginning we saw ourselves as not only a cross-disability organisation but cross-age organisation. That was very important. In my view, we are not even in the US as deep as we need to go because we are still not doing enough work with children, with seniors, with individuals with intellectual disabilities or psychiatric disabilities. But we can see that all of these groups are a part of the movement.
When disabled people started to come and visit the Berkeley Centre, what I think people was impressed with was the energy of what was going on. I define working at the centre in Berkeley as being in a candy store. There were so many issues of discrimination that, we face as disabled people that, we never ever thought about selecting one issue and work on that one issue. We fought over a number of issues that we had to work on at the same time. Because we were a cross-disability organisation and a movement, but also growing into becoming a cross-age organisation, you can just see if you read the history that we started out with personal assistance services. We started out with transportation. We started out with curb cuts. We started out with employment. We started out with youth. We started out with drug abuse. We were doing wheelchair repairs and van modifications. We were an organisation that was really challenged by the dreams that we had what we felt we could do. We were doing everything we could to raise money, not a lot of money but enough money to bring staff onboard with very low salaries, to be able to get our dreams moved forward.
The Disability Rights, Education and Defence Fund, which spun off in 1979, started in 1977, when we found out that the Berkeley government was putting forward some money. We thought we need our own lawyers because the lawyers in the city and the county were not appropriately representing disabled people. We wrote a grant. We got the money. We started. From my perspective, one of the important parts of our movement is really the ability to look at ourselves as people who want to participate in everything. We need not necessarily be the organisation that does everything but we do need to continuingly talk about what makes personal assistance services good or transportation or whatever is made good. In and of itself this will not allow us to be equal members of our society. We should not feel overwhelmed by having to be multitaskers because the reality is that all of us with significant disabilities multitask every day all day. So we should be multitasking to speed up the process.
I think it is also very important that we recognise that: I do not want someone to tell me what a piece of legislation should look like. We would never let the Congress say: Oh, you want something on civil rights? We will right it for you. Do not worry about it. That is completely unheard of. We were involved in the writing of all the major legislation with the exception of one law, section 504 of the Rehabilitation Act. That was a law that the disability community had virtually nothing to do with. When the language itself was written into the law, it was a 24 or 27 word piece of legislation in a bigger piece of legislation that prohibited discrimination against disabled people if the entity got any money from the federal government. Once that law was passed the disability community was very involved in the writing of the rules, in demonstrations, in many activities.
One message I really want to impart to you is: do not let anybody else do what you need to do. You need to educate yourselves like we have all around the world on what the legislative process is. How you write legislation. Identify members of your parliament and your local governments who are interested in disability because they have a disability themselves, they have a sister, a brother, a husband, a wife, a niece or a nephew, or somebody that is important to them, and you work with them on the laws that you want. You can not be passive players. As, we have worked on expanding the work that has gone on internationally, Scandinavia has played a very important part. As the movement internationally really began to evolve in the 70’s a common theme came forward, the need to work collaboratively together to end discrimination. We saw what I call inclusive development beginning to emerge, by that I mean, the need to look at how to integrate disability into the development of legislation and the implementation of legislation and policies in all countries. The ability to say that education is something that all people should receive including disabled children.
If you are working in a country that does not have much legislation in the area of education it is a perfect opportunity to be able to get the education of disabled children built into that legislation. When I worked at the World Bank one of the big issues was getting the average employee at the World Bank to see disability as an important part of their agenda. Because they were from countries were people are poor, were people who do not have disabilities are not getting the education they need, the jobs that they should have, health care, transportation etcetera, so why should they spend any time looking at the need of disabled individuals? We can give the argument of why they need to. A part that really have required organisations like the World Bank, SIDA, DANIDA and other organisations to look at the inclusion of disability in their foreign aid. When governments give money overseas for girls education, for infrastructure, to build roads, to bring buses, disabled people should not be excluded from that. The exclusion of disabled people in those policies means that there is going to be years and years before disabled people are going to benefit.
We know in our countries that, the building of roads that were not accessible, the purchase of buses that were not accessible, even today result in countries like Sweden having very limited opportunities for wheelchair users to get on to buses. If the buses were being brought into the country why would we not look at the technology that exists and insist that, buses that are brought into Uganda, Zambia, Vietnam etcetera are accessible. Why would we not ensure that disabled people can get on the buses from the beginning, or that if streets are being built where there are curbs at the corners there are ramps being built, not little ones that is for bicycles or motorbikes but so that a wheelchair can get up - even if there are not enough wheelchairs yet in the community.
At the Bank what we began to do was really to talk with the staff to get them to understand that disability is linked to poverty. We got the Bank to begin looking at doing better data collections so that countries, when they are doing census, they are able to get more information on how many disabled people live in the country. What is their economic status? Are children going to school? What effect is it having on the family? In many of our countries this has been happening in some degree for a long time. A part of what I were able to do, when I was working at the Bank, was to begin to do what we all do everyday, to allow people in our communities to see that we have the same potential as everybody else and that if you are in a poor country or a rich country people deserve equality. For me this is some of the fundamental parts of the work that we have been doing.
Some of the changes that have come about since 2002, with the World Bank and other development institutions, are that they begin to integrate disability more effectively into some of the international work that is happening. We are seeing countries more interested in education of disabled children. What does that really mean? What type of teacher training? The importance of building schools which are accessible from the beginning. Those are very important changes that are beginning to happen. Also supporting organisations run by disabled people. It is really a tribute to the international movement that, we see so many emerging and some very strong cross-disability rights organisations in many countries in the world. We can learn much from work that has been going on in those countries.
As a person living in the United States, looking at how the US is giving its foreign aid is something that is more and more important. We want to make sure as a disability rights movement within the country that, when the US government is giving money to support the development of women’s project that, disabled women need to be a part of those projects. There is a requirement from the State Department that when for example schools are being built overseas they should be accessible. There was a really terrible editorial in a progressive newspaper in Washington DC two years ago that said: why build accessible schools in Afghanistan when Afghanistan does not have roads? They thought: was this not ridiculous. Of course people wrote to the paper and said that we have to start building things that are accessible. There will be roads that will come to those schools at some point.
There is a mentality that still exists which really does not yet fundamentally understand the types of changes that we are trying to make. That is really our responsibility. What I believe is very important is to recognise that leadership exist in countries around the world. The leaders in those countries, like in our countries, need financial support in many ways to be able to help them get small staffs so they can develop leadership within their communities. They can influence laws and policies and implementations. They can fight discrimination as they will in the way their countries address these issues. It is also very important to know that the development of the Independent Living movement is not just verging in the west. We are seeing the development of programs in countries in Asia, Latin America. Japan has probably in some way been the leading country. They have, after having studied models in the United States, Sweden and Germany, not only taken Independent Living on within their country with more than a hundred centres. They also have committed money to working with other countries. Pakistan for example has a very strong Independent Living Centre and is getting support from the Japanese to set up ten more Independent Living centres. South Korea has been setting up programs. There is some very good work going on in Thailand and a number of other countries. The model of empowerment, the model of “nothing about us without us”, the model of cross-disability, the model of peer support, those are all fundamental components of what you see in these countries.
I want to conclude by saying: We all need to multitask. We need to look at what needs to be improved in our own lives on a day-to-day basis. But as countries who participate in the international world it is very important that we ensure that our voices are being heard in foreign aid, that we insist that money coming from our countries does not discriminate against disabled people but rather deals with empowerment.
[this is an edited transcript of speech]