Presentation at the Seminar on Human Rights for Persons with Disabilities from a North and South Perspective Stockholm, Sweden, 1998-08-23

Prof. Colin Barnes, Disability Research Unit, Leeds, UK

In England we have a strong and vibrant disability people’s movement which in many ways preceded the development of Disabled People’s International (DPI). The British Council of Organisations of Disabled People (BCODP) was actually formed so that it could be represented at and participate in the first DPI conference in 1981. The driving force behind much of the work initiated within the British movement was done by a disabled South African man, Vic Finkelstein.

BCODP is a national umbrella for organisations controlled and run by disabled people. It has always been involved with DPI, in particular with DPI Europe. It has also been involved with ENIL, DAA and all organisations that are intertwined with people that are involved with disability rights on an international perspective.

In England, we do not have formal rights in the same way as other countries do, because we have a monarchy and we are subjects. This is often forgotten by other countries’ representatives when they look at Britain.

In England we do have a strong welfare state and in many ways this welfare state has often been a problem for disabled persons in the sense that it has been all encompassing and paternalistic and in many ways has robbed disabled people of their independence.

In England we have a lot of legislation. Disability discrimination legislation came on to the statute books in 1995 and has resulted in disabled people being worse off in some respects.

Legislation is fine. We have had gender legislation about woman and race regulations since the 1970’s. But in spite of the legislation women, blacks and minority ethnic groups are still disadvantaged fundamentally in the U.K. We must be very clear about what we are talking about when we talk about legislation. It is limited. And it is limited very much so in favour of those with resources. We have to be very clear about what we want when we talk about legislation. It is only a road to a changed society.

The concept of rights is a spurious one, a very difficult one to pin down. One human being’s right is another human being’s wrong. Think about the right to life. As a disability activist I would argue very strongly against the right to destroy a child on the basis of an impairment. But woman’s groups and the medical profession argue that it is the woman’s right. The rights issue is a very complex issue and it is very easy to talk about human rights but we have to think very clearly about what we mean when we talk about human rights.

I am involved in the Disability Research Unit (DRU) at Leeds University which has been in existence since 1990. Originally it was formed by BCODP. My job was to provide both quantitative and qualitative evidence about the level of discrimination against disabled people in the U.K. Some of you may be familiar with the book "Disabled People in Britain and Discrimination". It takes as its lead the seven rights denied disabled people by government and society that were formulated in 1981 at the conference in Singapore.

The BCODP Research Unit evolved into the DRU because BCODP is an overtly political organisation in the British sense. For us disability is avowedly political. It can not be anything else. It is a political issue that does not simply effect disabled people. It is not simply a minority group issue.

BCODP and the DRU have taken the idea of disability that split the definition of impairment and disability in two. Impairment being the condition and disability being the social response / reaction to disabled people or the consequences of disability. Disability is about social consequences. It is about the way society responds to perceived impairments And I say perceived impairments because I do not believe that disabled people are essentially any different from anyone else apart from the fact that their impairment might be socially unacceptable in a particular point in history or a particular place.

Now the important point about this is when you go into the international arena you actually see how relevant that insight is because although a majority of the world’s disabled population live in the majority under-resourced world or what some people call developing countries, there are more disabled persons per capita of the population in developed well-resourced countries. For example, Austria has more disabled people per population than any other country. According to figures produced by the UN, about 21 % of the Austrian population is defined as disabled people. The lowest population according to UN figures is Peru with only 2 % of its population being defined as disabled. We have this anomalous situation where we have rich countries with more disabled people per population and poor countries with less using the UN definition. Generally it is a rule that is true. So we are actually talking about a social situation, about a society’s responses to people with perceived impairments. If you think about it people with disabilities, or impairments have a better chance to survive in a well-resourced environment than in an underdeveloped poorly-resourced environment.

When you talk about disability politics and disability you can not separate it from other forms of social oppression. Disability or the oppression of disabled people, the exclusion of disabled people or what ever you want to call it, is just one form of biological justification for inequality. Throughout history societies have justified inequality against particular sections of the community on the basis of biology in one form or another. The ancient Greeks discriminated against anyone who was non-Greek and not male simply because they were considered as biologically or genetically inferior. They did not use the terms biological or genetical. They were just seen as inferior, they were inferior Greeks, if you like. Throughout history woman have been denied their equal roll in society on the basis that they were designed specifically for childrearing, domestic tasks and did not have the intellectual capacity of men. Similarly we justify racism on the basis of biological inferiority. To a large extent we have blown all that kind of argument away with reference to statistics. But, in research we still justify inequality on the basis of impairment with reference to biology and it has to be seen in that context. Once you understand this you can not confront inequality or the specific special treatment on the basis of impair without confronting sexism, racism, heterosexism and all the other isms that have been used to justify inequality throughout history.

The concepts of north, south, east and west developed and underdeveloped are loaded with hierarchy. What we are really talking about is the rich minority world and the poor majority world. It is not enough to say that there is a division between north and south because whether we like to admit it or not South Africa is a lot richer than other African countries and parts of Britain are much richer than other European countries. We are really talking about rich communities and poor communities and it has to be seen on that level.

Now I want to find something with reference to the points Adolf raised for this discussion. I have thought about the points, they are important ones and I thought I would get a lot statistics to prove what I wanted to say. But then I thought that won’t be any good, it’s not an academic audience, they don’t want to hear that rubbish, they want the truth. So, let’s get down to the brass tacks.

Adolf raised seven points that he wanted us to think about. They are all very fundamental points from my perspective. They have the economy at the beginning which is probably most important because historically disability is an economic category, it is one way of focusing on people’s productivity which is a different concept in the twenty-first century.

The first point was gross national product. That is important but going back to something I referred to a couple minutes ago: one country’s gross national product is another country’s gross national deficit. We in the west are rich because a lot of countries are poor. It is something we have to face. If we are going to look at disability politics and changing the world for our brothers and sisters in the developing world than we have to be political in the sense that governments must realise that how they use their international influence affects not only the production of disability that is how disabled our people are seen but also the production of impairment. Much of what we in the west do creates disability and impairment in developing countries.

If you want me to go into statistics, we have evidence to show that:

• over one hundred million people in majority world countries have impairments as a result of malnutrition;
• 250 thousand children go blind every year through lack of vitamin A (a handful of green vegetables each day could prevent this);
• 800 thousand million people are at risk for learning difficulties caused through lack of iodine;
• around 100 thousand woman in Africa acquire impairment through childbirth complications;
• about 40 % of hearing loss in children in the majority world would be preventable by early identification;
• there were 100 thousand new cases of polio in 1994 ;
• 6 million people world-wide are affected by leprosy

All this is because we in the west do not use what resources we have in the developing world as we should. Now you may say that this is about impairment and not disability. But as our culture penetrates non- developing countries many of the traditional means of accommodating disabled people or people with impairments in developing world societies or majority world societies are being eroded by western values. And western values and traditional mechanism within the west mean that looking after disabled people is done in institutions. Segregated special support is actually being exported.

So when we think of the gross national product we have to think alternatively that our gross national product is often built on another country’s gross national deficit.

Secondly, Adolf pointed to income distribution. Again this is an important question not only within cultures and societies but also between cultures and societies. The USA has 3 % of the world’s population yet uses 20 % of world’s resources. That is a staggering figure. The G7 countries of the world need to be aware that their policies and development programmes create impairment and disability in the majority world. They need to use their resources and we organisations of people with disabilities have to become involved in those kind of debates. So, it is not just income distribution within societies. Lets face it, if you are a rich crip in Britain your life is fundamentally better than if you are a poor crip living on a hard working class estate. We have to be aware that it is about income distribution within societies and between societies.

Another point is access to infrastructure. Again, thinking of majority and minority world divisions we take for granted ideas of health, employment, and education in wealthy countries. These are issues that confront all populations in the majority world. When we talk about education in certain countries for disabled child we need to remember that education is a big minus for non-disabled children in many countries. Employment is a major problem for many people in the majority world. We also have to remember that impairment and being classified as a disabled person in the majority world often has economic advantages. In Jordan for example, many people who are living in institutions feel better off than their non-disabled peers outside the institution because life is fundamentally hard for a majority of the population. To be in an institution means that you have some type of employment, some form of food, and some form of healthcare. Many people outside of the institution in the majority world do not have those luxuries and we have to readdress what we are actually talking about when we talk about distribution infrastructures in a majority world setting.

Systems of law is another point. Again going back to points that have been raised over and over again, law systems change and vary from country to country. As I said, we in Britain have no Bill of Rights. We are subjects. The system of law varies fundamentally in America and Britain where we have a huge disability business, organisations ’for’ and organisations ’of’, who will actually fight the law to "fight for the rights of disabled people" These organisations are not always there in majority world countries. DPI has been a beacon for organisations trying to struggle to form to fight for disabled people’s rights in those countries. So we need to be clear about the distinction between systems of law in well developed countries and under-financed countries. Fighting the legal system is a costly business especially if you do not have any money. Even in the U.K. if you do not have money you could not take an employer to court for discrimination even if you have a solid case because there is no legal mechanism to support individuals and provide them with the resources.

In the U.K. we have a Disability Council formed in 1995 which has no powers what so ever. The present government has agreed to introduce a commission which will challenge discrimination. We have had a commission for racial equality and a commission for equal rights for woman since the 1970’s. But ask any feminist or black person in the U.K. if the British society is an equal society and they will fundamentally respond that it is not. You got to be very aware that the law works for those who have resources. In both rich and poor countries it does not work for those who do not have resources.

There is a White Paper from the British government that is high on rhetoric. Legal aid has not been hither to available to disabled people trying to fight discrimination. We do not yet know if legal aid will be available when the commission is set up. That is not to say that disabled people have not been able to challenge discrimination. The only way that they have been able to hither to is with the support from organisations with money. The few cases that have gone to court have had the support of trade unions who have a strong disability contingent. They have supported disabled people. It is the trade unions rather than the legal mechanism of the state that have brought those cases to court.

Back to Adolf’s list. The system of law and mechanisms of legal protection Some countries in the minority world have strong mechanisms of legal protection others do not. I would argue that we in the U.K. do not. It is about class and access to resources both economic and social. In majority world countries it is profoundly different and profoundly worse or so I am lead to believe from all the literature that I have read. But what we have to do here is not to confuse different approaches to disability. One of the things an academic in England, Michael Miles, draws attention to is that the penetration of western culture into many cultures outside the western sphere of influence has eroded traditional mechanisms, communal responses to problems. His particular area of interest is Afghanistan. As far as he is concerned the Koran and traditional Afghan society took a very different view to impairment than we do in the west. And there are countless examples of western penetration in terms of working methods that have actually distanced disabled people from traditional mechanisms for being part of community. There is a well know example in Punibar where they had a long tradition of incorporating disabled people in the community regardless of functional limitation. But with the coming of the logging systems the traditional mechanism for generating resources broke down. Everyone became involved with logging companies and you had to be physically fit to be part of the logging industry. Therefore, if you could not work in the logging industry your were dependent on the rest of the community. Whereas historically that was not the case, everyone contributed to the communal good. The coming of waged labour employment eroded traditional mechanisms of distribution of resources in Punibar India.. You must be aware that legal mechanisms are not the only way to protect an individual’s life chances. You have to use what resources there already are and allow people to use the resources to develop them if necessary.

Which brings us to the degree of control. Again degree of control usually revolves around individuals but again this is a western concept. Several speakers have already mentioned individual rights. which are avowedly a western concept. Many cultures have communal rights. The concept of individual rights brings with it competition. As I said in the beginning one person’s right is another person’s wrong. Concepts of individuality, rights mechanisms for control have to be seen in the cultural context in which they have developed. From everything I have read it is clear that it is not appropriate to walk in and say that these are rights you should have because we have to fight for them in the west. We do not know whether these rights are automatically distributed throughout the community and called something else. We have to be very careful about the notion of human rights.

I think the strength of organisations is an important one both in minority well-resourced countries and in majority poor-resourced countries. Whichever perspective you adopt is fundamental to the development of disabled people’s rights and indeed for everybody in society. I think that organisations of disabled people have a particular roll to play in this instance because whichever way you look at it we are the last bastion of biological determinism doing it for ourselves if you like a popular phrase. It sends a fundamental messages to both the disabled and non-disabled communities. That’s not to say that because we have well-structured organisations in the U.K. we should go out and say this is what others should be doing; that is the last thing I think it should be. What I am suggesting is sharing expertise, sharing knowledge when it is needed and when it is asked for. Being there by being an example. DPI has been an example for many of us in the U.K. and it has been central to our development and conscienceness raising. In the U.K. disabled people’s organisations are meeting every week in someone’s front room because we do not have a lot of money. But once disabled people in these environments realise that there are disabled people all over the world coming together in a variety of different environments it is overwhelmingly important in terms of raising individual and collective self-esteem. Strength of organisations is something that is important and is something that must be understood in a geographical and cultural context.

Now all this brings us back to what I said in the beginning, Disability for me is not just about disabled people, it is about the way society is organised. When we talk about disability rights these rights can not be seen in isolation from rights generally. If, for example, we talk about sensitive and important issues like rights it seems to me that we have to begin with the right to life. This takes on issues about abortion on the basis of impairment, of genetic engineering, genetic science and the restructuring of the human body to conform to a particular view of what a human body should be like. Because if you are going to argue for equality on the basis of being a disabled person, be it education, employment, housing or whatever, if you can not justify the right to life you can not justify any of the other rights. It seems to me that the right to life has to be the first and foremost issue that we must confront.

In the U.K. we want disabled people to be included in mainstream schools and we want disabled people to be included in mainstream universities. To do that does not just mean to give the disabled child/ student the necessary tools and equipment to integrate in a mainstream environment because to be surrounded by non-disabled peers, to be taught about a non-disabled world is very isolating and in the end you find that the disabled person may want to get out of that environment simply because there is no place for them within it. When we talk about integrating disabled people in mainstream schools, to do it successfully we are talking about changing the education system fundamentally. Any education system that is built around competition for places and hierarchies of perceived intelligence will always discriminate against disabled people in one way or another. So we are talking about the reconstruction of an inclusive education system which is fundamentally different from the one we have in the U.K.. When we talk about education we have to remember that non-disabled children do not get equal access to equal education systems. In the U.K. we have a private education system which is infinitely different from the mainstream education system. We have introduced choice into the education system so parents of non-disabled children can choose which school they send their children to which means that educators and teachers have all looked to improving their school’s education records in terms of exam achievement as a means of attracting particular pupils which means we have now a shift towards a two tier system. If we are serious about including disabled children in mainstream education these are the kind of policies we have to address head-on. It is not enough providing ramps, large print, special support services for a disabled child in a mainstream school. It means changing the ethos of the education system as a whole.

If we move on to employment. Employment is a major problem in all western societies. It is not just disabled people who have a problem with employment There is unemployment among non-disabled people as well. Many disabled people are very defensive of the sheltered workshops being shut down because they know that the market does not support disabled people’s employment very successfully. In 1944 following the social concern over the war dead and damaged whether they were injured in the forces or in the German bombing raids we introduced much legislation to provide work for disabled people. A quota scheme compelled all employers to employ 3% of its work force from the Disabled People’s Register. and it introduced a Disabled Person Employment Rehabilitation Service. It was successful for about five or six years. When the response to the immediate war situation eroded so did the support for those policies. It has not been supported since the 1950’s. They were abolished completely with the coming of the Disability Discrimination Act. Now disabled people have to fight discrimination on an individual basis. And the argument is sound if you make discrimination against disabled people illegal you do not need a quota scheme. That is the argument, it is very sound on a philosophical level, but not sound in practice.

When we look at the way income is distributed in societies such as mine it is hard to persuade a disabled person to go into open employment and loose disability benefits. There is no incentive. The situation is even worse in America. They have no health care insurance coverage. If you work you have to pay for your health care. There are about 35 million American who do not have health care coverage according to Gary Albretch. In the U.K. you get certain benefits if you are unemployed and disabled. If you get a job you loose those benefits. There is no incentive to work. If you look at statistics, and this is world-wide not just U.K., in minority wealthy countries the kind of jobs disabled people get are not necessarily the type of jobs they want. It is called under-employment or what Stuart Hall a black sociologist in the U.K. calls shit jobs - poorly paid, no-chance-for-promotion jobs.

In the U .K. we have an employment problem, non-disabled people are unemployed. Unfortunately the way the system is skewed the benefits-structure looks very attractive. If you are unemployed and non-disabled you get more money if you can become disabled. If you go back to the majority world environment, disability has many attractions for people who are living in a subsistence economy. Only the other week there was a scandal because there was an organisation that actually maimed children because they made a better proposition than non-disabled children as beggars.

Going back to health care. Everybody in the U.K. does not have equal access to health care. Since market forces were introduced in the 1980’s into the system with a vengeance we have a two-tier system. We have a private system and a National Health Service system. If you are in the private system fine. If you are in the National Health Service system there is a waiting list allocation according to need. For example, children with Downs Syndrome do not have automatic right to heart surgery in the U.K. because it is viewed by NHS professionals that those children will always be a burden on society. Again going back to a minority/ majority world dichotomy, health care as we perceive it in the west, north, wealthy countries may be fundamentally different from what it is in majority world environments. Importing wheel chairs may be a great idea if everyone lives in an urban environment. But that might not be the case if you are not living in an environment where there are flat surfaces. So it all has to be thought out very carefully.

And finally I return to the issue of genetics and what human actually means. We have a future where we can theoretically shape what a human being should be and should not be like. Areas and issues are perceived on impairment all the time, it is far more evident in the minority world than in the majority world. If you really think about it, today we give woman who do not want to have breasts of a particular shape prostheses; tomorrow with genetic engineering we may be able to give them genes. which means that breasts are only shaped one way. Once that happens, "normal" breasts will become an impairment. In minority countries dyslexia and anorexia are all conditions which have brought psychological and physical consequences. Neither of which exist in the majority world where the needs of the population are fundamentally different.

To conclude, if we are serious about creating of a world in which people are not discriminated against on the basis of perceive impairment we have to take onboard the way society is organised, the way income is distributed and what is being produced. If we do not do that, the impact on what we actually achieve will always be a minority issue and that will never ever solve the problems of the disabled population, no matter how you draw the line or how you define it.

Thank you.

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