Colin Barnes, Disability Research Unit, Leeds
I’d like to thank Adolf and the Institute for Independent Living for inviting me here.
I will begin by saying something about the Disability Research Unit and the role it takes at Leeds University and why I am involved in disability and disability politics. I was born with a hereditary visual impairment, both my parents are disabled people, my father spent his entire working life in a sheltered workshop for disabled men, and my mother was diagnosed as schizophrenic. As a partial result, I was sent off to a residential school for blind and deaf children at the age of four, which is very interesting when you actually think about it because one group of children can’t communicate physically, and the other part of the group can’t communicate orally, so think about that in terms of education. It was quite an interesting experience.
That is why I’m involved in disability, and what I want to say today is that discrimination against disabled people is an issue for society as a whole, it affects everyone. It is something that society, whether it be a northern well resourced rich society, or an underdeveloped, poor majority world society, can no longer financially or socially afford. That is what I want to focus on today. I also want to focus on the British experience because in some ways it is very similar to the Swedish experience because you also have a strong welfare state.
Firstly, I will focus on the laws that we have in the U.K. which concern disability, leading into the Disability Discrimination Act which was introduced in 1995, and on why the Disability Discrimination Act actually came on to the statute books. Finally I will say something about the limitations of the current legislation and talk a little about what the Government is actually doing to amend that legislation because one of the things that is important for a country such as Sweden who is actually producing blueprints for legislation is that you learn from the mistakes of others. And believe me, the 1995 Disability Discrimination Act in the U.K. is, to say the least, a mistake.
Like many European societies following the Second World War there was a great deal of social obligation felt towards people who had been damaged during the war, both war victims and citizens. It is interesting to note that all the major moves forward in terms of disability politics follow war. Even the American Disability Rights movement which is a major influence on all of us who are involved in disability came about in the 1960s and 1970s when there were a lot of Vietnam veterans who came back from war and found that society was not what they expected it to be. We in the U.K. set up the welfare state, which was a great idea, and it was important because it introduced policies which were supposed to provide services from the cradle to the grave.
If that welfare state had have worked there would have been no need for anti-discrimination legislation, because implicitly if not explicitly, the legislation that was introduced in many ways recognised the rights of disabled people. For example, if we think about the 1944 Education Act which was introduced in 1945, it states quite clearly that disabled children should be educated alongside their peers in mainstream schools wherever possible and practical. The unfortunate thing is of course that it also said that where this was not practical we should provide special education facilities. The 1944 Disabled Persons Employment Act came on to the statute books in 1945. It introduced a whole range of policies including the setting up of rehabilitation services for disabled people. It introduced a quota scheme which compelled all employers who employ more than 20 people to employ 3% of their workforce from the Disabled Persons Register. It also introduced a number of policies to set up sheltered workshops for disabled workers, similar to the one in which my father worked. Also we had in 1946 the setting up of the National Health Service which gave free healthcare to all regardless of impairment, disability or ability to pay. In 1948 the National Assistance Act introduced policies which compelled local authorities to make provision for disabled people within the community.
This is alongside policies which traditionally had been to institutionalise large numbers of disabled people both in education and in their adult life. The more severe your impairment was, the more likely you were to be in an institution. In the 1950s, the expansion of services continued - local services and institutions, and it wasn’t until the 1960s, that the shift from institutional ’care’ to community care policies became a reality. We were still putting people into institutions if they were perceived as disabled in the 1950s. I can testify as one of those children because, as I say, the school that I went to was a residential school, it wasn’t a day school. And that policy didn’t really begin to be abandoned until the 1960s. In the 1960s policy shifted away from institutional care towards community based services.
Following the recognition that we could provide services for disabled people in the community, it was also clear that the services that were available were not suitable. One of the failings of the welfare state was that it didn’t compel local authorities to provide services for disabled people, it said they should provide services where appropriate and necessary, and we have a tradition in the U.K. of services being provided by charities. Charities continued to provide services throughout the 1950s and the 1960s. Because of the limitations of local service provision for disabled people, the 1970 Chronically Sick and Disabled Persons Act came onto the statute books in 1970. That triggered a whole expansion of community based provisions; home help, day centres, respite centres, meal on wheels services, all those kind of facilities that are common or familiar to those of you who are using community based services.
In the 1970s that act was strengthened with the 1975 Chronically Sick and Disabled Persons Amendment Act, the act also included elements about architecture and access housing but like so many pieces of legislation, it was not compulsory. It had caveats where local authorities and builders could get out of introducing appropriate policies - where practical, where possible, where economically viable. All those kind of caveats were introduced into the legislation, so the legislation only had a limited effect. In the 1970s there was an expansion of local authority services and we had a change of Government in the 1980s. Margaret Thatcher came to power and there was a shift away from social policies to liberal ’right wing’ policies, and it wasn’t community care for the community provided by the statutory authorities, but community care by the community. It fell to families and charities to provide services for disabled people.
During the 1980s, another piece of legislation was introduced to try and strengthen the legislation that already existed called The 1986 Disabled Persons Representation Services Consultation Act. It gives disabled people more involvement in local provision because the limitations of local provision were becoming all too apparent, both economically and socially. By the 1990s the limitations of provision became all too apparent and in 1995 we had the introduction of the 1995 Discrimination Act.
Before I turn to the limitations of that act, I want to focus on why the act was necessary, because when you look at the English experience, you automatically assume that there is a great deal of provision for disabled people and there is no need for legislation. Well first and foremost it became evident to all concerned that as the services expanded, so did the cost of services. Rising expectations meant that disabled people wanted more services. They wanted more services because the services that were available were geared not to empowering disabled people, but caring for them in a traditional, paternalistic way.
I’ll give you an example of the kind of escalation of costs that we are talking about:
Those are the kind of figures that are important, because they draw attention to the escalating cost of nothing less than dependency creation, which is what we are talking about. Disability is about dependence. Disabled people, historically have been treated as dependant, that’s not what the majority of disabled people want. They want to be part of society, they want to produce, be part of, rather than apart from. The cost of dependence is no longer acceptable and it has become all too apparent to politicians whether they are supportive of equal rights for disabled people or not. Thus there is an economic issue about the need for anti-discrimination legislation.
Another important factor relates to rising expectations, in particular the disabled peoples movement. From the 1960s onwards it became apparent to disabled people in the U.K. that the welfare state was not providing the services that we wanted. The first issue that came onto the political agenda was the question of poverty, because in the 1960s we did not have benefits for disabled people and the cost of living with an impairment in a society geared to the needs of a non-disabled majority, or minority, whichever you prefer are fundamental. Disabled people in the 1960s at the height of the welfare state expansion in the U.K. were living in poverty. It wasn’t brought on to the political agenda by academics, or politicians, it was brought onto the political agenda by disabled people.
News of developments overseas quickly filtered through to disabled people’s organisations which had started to become a reality in the U.K. in the 1960s, particularly the Self Advocacy Movement of people with learning difficulties in Sweden and the Movement for Independent Living in the United States. In the 1970s the expansion of disabled peoples organisations increased and disabled people started running their own services - The Disability Information and Advice Line is one example. Basically because of all the money we have spent on disability services since the 1940s, disabled people were still not getting the kind of information they wanted. They weren’t getting it in accessable formats and it didn’t concern the kind of information, the kind of data support services that disabled people need. The Disability Information and Advice Line came out of the Derbyshire coalition of Disabled people in 1978. In 1981 we have the formation of DPI - Disabled Peoples International - and as a result the formation of the British Council of Organisations of Disabled People (BCODP). BCODP took the lead from DPI which was about equal rights for disabled people - rights to education, employment, benifits, and housing.
Throughout the 1980s the campaign for anti-discrimination legislation intensified. The first real attempt to get anti-descrimination legislation on to the statute books was brought about by a deaf MP, Jack Ashley in 1982. It was thirteen years later, and thirteen attempts to get a bill on to the statute books, that the British Government, the Tory Government finally yielded to the pressure. But the pressure intensified throughout the 1980s depite the efforts of some established charities. These charities are organisations for disabled people who have a vested interest in maintaining disabled peoples dependence, because in a sense that is how they make their living. They were telling the Government that there wasn’t any need initially for anti-discrimination legislation.
In 1985 that policy changed when the campaign became unstoppable, and the voluntary organizations for anti-discrimination legislation came into existence. BCODP achieved something quite staggering at the time, it got funding to produce a report on discrimination against disabled people.
During the 1980s the Government were arguing three things:
With this funding the BCODP produced ’Disabled People in Britain and Discrimination’ which was launched formally on the 28th January 1992. The book contained staggering evidence against the Government’s arguments.
On the 31st January, the British Government admitted for the first time that discrimination against disabled people was widespread. The Government could no longer argue that such a law was unworkable because the ADA had come onto the statute books in the United States, and if the Americans could produce a law which is workable there is no reason why the British couldn’t introduce one. It took another three years before we actually got the law.
So in effect the campaign became unstoppable. It became evident because of action by disabled people who took to the streets in demonstrations against inaccessible transport and inadequate benefits that something had to change. In 1994 the British Government agreed to introduce an anti-discrimination law.
So what’s wrong with the law?
Firstly the law in Britain is a law structured on a medical definition of disability. It doesn’t focus on the real issues. It addresses disability from a medical perspective. It focuses on the disability of the individual as the cause of the problem. Some disabled people, some people with learning difficulties and some people with mental health problems, or, mental health system survivors as they prefer to be referred to in the U.K. are not covered by the act. The question of causality as I say is linked to the impairment rather than the way society is organised. So the idea that somehow adjustment is necessary is inherently paternal rather than a right.
The law focuses on three particular issues. It addresses
The questions of indirect discrimination, transportation, inexcessable environment and cultural attitudes are not really addressed in the legislation. Passive discrimination is not addressed either. Passive discrimination is discrimination that results as an outcome of not adhering to the existing policies. There was no means of addressing those issues.
Another thing that was important about the coming of the Discrimination Act, when it came onto the statute books, was that it signalled the fact that disabled people theoretically could fight discrimination on an individual level, therefore there was no need, it was argued, for positive policies to get disabled people into work. So the quota scheme was abolished, it went out of the window. The argument was of course, that the quota scheme had not been affective. Now that’s to some extent true, it hadn’t been affective, but it had not been supported by any Government since the 1950s. The fines for non-compliance with the Act were set in 1944 at 100 pounds. There has only been ten prosecutions in the U.K. for non-compliance since 1945, and the last one was in 1975. The total fines amount to less than 500 pounds, so it is clear that the act has not been supported by the Government from the outset.
Equally importantly, there was no enforcement mechanism introduced with the Disability Discrimination Act. There was no commission enabling disabled people to fight legislation, there was instead a council set up by the British Government - The National Disability Council. It was set up to help the Government introduce policies to help accommodate disabled peoples needs. It was opposed by organisations of disabled people, such as the BCODP, but interestingly, six of Britain’s largest charities for disabled people agreed to be part of the National Disability Council. These include the Royal Association for Disablement and Rehabilitation, SCOPE, The Royal National Institute for the Blind, The Royal National Institute for the Deaf, MENCAP, which is an organisation for people with learning difficulties, and MIND, an organisation for people who have experienced mental health problems. The uneasy alliance between organisations of and organisations for disabled people was broken. However, the incoming Labour Government in May1997 agreed to amend the Disability Discrimination Act and introduce new legislation which would address the issues that disabled people have raised. They set up a taskforce which included members of disabled peoples organisations, that’s organisations controlled and run by disabled people, such as BCODP, charities, employers organisations and other professional organisations. The idea being that through continuous dialogue, we could produce a legislative document which was more comprehensive, and would provide the necessary legislative means to combat discrimination against disabled people.
The outcome of that taskforce and the policies are still under discussion. They have agreed to scrap the Disability Council and introduce a Disability Commission next year. I’m not sure what powers it will have yet or how effective it will be.
To conclude I believe that inorder to introduce a comprehensive discrimination policy, we need:
Whether it be a commission to address those issues is a debatable issue. For me, a strong enforcement mechanism requires a nationwide network of organisations controlled and run by disabled people who have an input into any commission or enforcement mechanism which is put into place. That’s necessary because disabled individuals cannot fight discrimination alone. History shows that individuals cannot survive in an environment dominated by the socially and economically powerful.
I’d like to finish by saying that disability is an issue that can no longer be left to be perceived as a minority group issue. It is about society as a whole. One of the things that is fundamentally evident in western society is that there are more disabled people today than ever before in history, and the numbers of disabled people will increase in the next century. Basically because of medical advances on the ageing process we have got more disabled people in the developed minority world than we have in the majority world. The cost of keeping that growing number of disabled people independent is escalating every year, and the benefits of an all inclusive society are evident when you look at accessible transport. Inaccessible transport not only discriminates against disabled people in wheelchairs, but it also discriminates against anybody carrying heavy bags who have been shopping, against women with pushchairs, and against older people. We often perceive disability discrimination and conceal it within the context of an ageing population, but it is an issue that affects us all.
The majority of impairments are not hereditary, they are not congenital. They are acquired through injury, accident, or old age. Most of us, whether we have an impairment or not will be a disabled person before we die, and it is something that we need to remember.
Thank you very much indeed.