The Philosophy and Culture of the UK Disability Arts Movement
- a personal perspective

Dr Ju Gosling aka ju90

I want to begin by talking about the web art work that I’ve produced for Sinnlos - “Helping the Handicapped”. I created this work partly because it seemed to fit in so well with the Sinnlos theme of exploring what disables and hinders people in daily life, society and art, and thus making new perceptions, thought processes and actions possible for all of us.
   
The work was also inspired by European Year of Disabled People, which has prompted disabled activists in the United Kingdom to ask what conceptual models of disability are used in other European countries? In the UK, as in many countries, artists are at the forefront of the disability rights movement, and art is used extensively to reflect our philosophy and culture. I hope that we will be able to discuss the culture and philosophy of the Austrian disability arts movement, and further my understanding of it, during the discussion that will follow this lecture.

The social model of disability, which is the theoretical model used by the UK disability rights movement, actually of course originated in the United States. In the UK, as a civil rights movement we recognise that, in terms of legislation and public awareness at least, the US is ahead of any country in Europe. In the same way, other civil rights movements such as the Black, and Lesbian and Gay, movements have a longer history and therefore are closer to achieving their goals than the disability rights movement.

That is not to say, though, that the US should be a model for Europe, nor indeed that it could be. And it is not to say that the social model leads us to a perfect understanding of disability. There is an ongoing debate in the UK about how the social model can be developed to take impairment, other cultural identities and so on into account, and that is how it should be. Once our philosophy becomes dogma, it is useless; our philosophy is only helpful to us when it is constantly developing.

The social model of disability is actually one of four linked conceptual models, the others being the charity model, the medical model and the administrative model. The use of disabling language is closely associated with all of these. What I’d like to do now is to talk you through the web art work “Helping the Handicapped”, explaining more about these models at the same time.

Starting at the beginning, the site has been deliberately designed to appear child-like. As well as making it easy and accessible to use, this reflects the way in which we learn cultural and social attitudes as children, often through play. It stresses that these attitudes are learned, rather than being innate, and that attitudes can therefore be unlearned and changed. Unlike true HTML programming, though, the reader cannot follow their own path through the site: I the artist have chosen the reading order; and this control is explicit.

In terms of the title, I have deliberately chosen to use the word “handicapped” rather than “disabled”, which is currently the preferred name of the UK disability rights movement. “Handicapped” is a word which is still in common usage in the international English language, particularly in the United States but also in the United Kingdom. However, many disabled people find the word offensive because it is believed to derive from the expression “cap in hand”, in other words, to beg for charity.

The focus of the disability rights movement worldwide is to obtain civil rights, and therefore to enable all disabled people to lead fulfiled and independent lives. We want self-determination, rather than being forced into dependence on others. However, there is still a widespread assumption that disabled people should be dependent on asking others for help, rather than being enabled to do things for ourselves through the use of appropriate aids and equipment, adaptations to the environment, and assistance that is under our own control.

To give a personal example, I recently won the first disability discrimination case to be taken against a British trade union. However, the ruling was limited, and one legal finding was to the effect that I had no right, in a social situation, to be able to collect my own food from a buffet or drink from a bar. This was despite the fact that it would be entirely possible for me to do so if wheelchair access was provided.

Instead I was expected to beg for help from strangers, or to provide my own helper to fetch my food and drink even though I would not otherwise have needed any help. The principle of going “cap in hand” to beg for charity is enshrined in our legal system.

The first image is therefore a charitable image. For those of you who are visually impaired, the image shows a fashion doll, dressed in a ballgown, facing outward against a white background. Behind her a group of fashion dolls dressed in party clothes are drinking and socialising.

The text reads: "I organise social events for non-disabled people. This raises money to create jobs for non-disabled people. Then we provide the disabled people whom we think are deserving with the things that we think they need."

In fact the text of these images is really the sub-text; we cannot imagine the characters showing such insight in reality. But the reality of much charity fundraising is that it is run mainly for the benefit of non-disabled people, who both enjoy the fundraising activities arranged for them and benefit from the jobs that are created. Very often more charitable money is spent on the non-disabled people who run the charities than on the disabled people whose lives it is supposed to improve.

Meanwhile disabled people are forced to beg and be grateful for anything that is provided for them as a result, since the benefits and services provided are not ours by right. Disability rights campaigners want disabled people to have the right to be provided with the disability aids and support services that we require to lead independent lives, rather than depending on charity. However genuine the desire to help disabled people, charity very often does more harm than good, particularly as it undermines self-determination and self-esteem.

This is not to criticise charities per se. There are a number of wealthy private individuals who employ others to give away part of their income to campaigning organisations, and this has to be applauded. There are also a number of charities who, while they employ traditional fundraising techniques, give the money raised to self-organised groups to spend on the priorities that the groups themselves have identified. And of course many self-organised groups legally have charitable status.

Anyway, we can come back to this issue in the question and answer session, but moving on, the next image reflects the enormous influence that the medical profession has over mainstream attitudes towards disability. For those of you who are visually impaired, the image shows a male doll, dressed as a doctor, facing outward against a white background. Behind him are a child's medical kit and microscope. The text reads:

"I invent and administer tests to classify disabled people according to what I think are their impairments. Then I carry out experiments to try to make them more like me. If I fail, I try to identify and kill them before they are born."

Medical attitudes in the 21st century remain little changed from the 19th century, when there was an obsession with identification and classification of both human beings and natural objects and phenomena. Within the medical model of disability, the subject of this identification and classification then becomes the condition, rather than merely experiencing it. For example, doctors will commonly refer to a disabled person by their condition rather than their name - “the cerebral palsy case in bed two”, “the paraplegic over there”.

This in turn creates a belief that all people who share the same classification will have the same experiences, and should therefore all be treated in the same way. This ignores the reality, which is that everyone is unique and experiences their condition differently. It also ignores the many people who cannot be classified in this way. And then of course there are the people who are wrongly classified, because of an imperfect understanding of their condition. Obviously classification can aid understanding and therefore can benefit disabled people, but only if the benefits are recognised as being limited. Otherwise it can be extremely counter-productive.

For example, a vast proportion of health funding in the United Kingdom is spent on administering tests in order to classify people by their impairments or conditions. Spending on treatment, by comparison, is very limited. Yet many of us assume that the majority of healthcare spending goes on the many helpful treatments that do exist, not on research and testing.

The type of treatment offered by the medical system is also very restricted, both within the United Kingdom and worldwide. Drug therapy is the most popular treatment, reflecting the enormous influence of pharmaceutical companies through both research funding and marketing. The vast majority of these drugs can have serious side-effects, and each year thousands of people die as a result. Meanwhile pharmaceutical companies continue to make billions of pounds of profit for their shareholders out of sick and disabled people.

For some disabled people, taking drugs represents an informed choice, as the drugs offer them an improved quality of life and/or lifespan which seems worth the risk involved. But others do not have the resources they need to make an informed choice, and so are exposed to risks that they have not considered. Others still are forced to take drugs against their will, even when the side effects are severe and the benefits of the drug doubtful.

For example, drugs used to treat mental health problems often have very severe side effects, while the benefits are restricted. For this reason, many people with mental health problems prefer alternative therapies to medication. But in the United Kingdom, it will shortly become legal to force people classified as having mental health problems to take drugs against their will in their own homes.

Treatments involving technology are also popular, and again involve large profits for the manufacturers. However, the treatments that can be most helpful to people with chronic conditions - listening therapies, physical therapy, pain management and so-called “alternative” therapies such as acupuncture - are either completely unavailable or are strictly rationed. This seems to be because the treatments are viewed as being “people centred” as opposed to being “scientific” - but surely it is people who should be the priority?

And when it comes to so-called scientific treatment, disabled people are particularly vulnerable to being experimented on. In the developing world, this is often the only way for disabled people to access medical treatment of any kind. Their only option is to agree to participate in experimental treatment, rather than being given affordable access to treatment that has proven to be safe and effective.

But in the United Kingdom too, disabled people in institutions have frequently been submitted to experimental treatments, often without their consent. This extends beyond death; in the United Kingdom recently it was discovered that more than 20,000 disabled people in institutions had had their brains removed after death for research purposes, without anyone’s consent being asked.

And disabled children in particular continue to be the subject of experimental treatments even when they have no need of them. Some die as a result, despite having impairments that are not in themselves life-threatening. Other children have their functioning but unusual limbs, fingers and so on amputated in order that they can be fitted with a non-functioning prosthetic of more usual appearance. The goal is to achieve an appearance of “normality”, rather than recognising that we are all “normal”.

Because, of course, it is normal to be disabled, just as it is normal to be elderly. In “helping the handicapped” we are helping ourselves, the issues affect us all. Not just as parents, family and friends of disabled people, but as disabled people ourselves. At some point in our lives, all of us will experience a range of impairments to a greater or lesser extent: any and all of us can and will become disabled. However much impairment is classified as being “abnormal”, the reality is that impairment is a normal part of the human condition.

You would think that only a child could believe otherwise, but in fact this childish refusal to accept reality underpins Western culture. In that sense we have not moved on from the ancient Greek ideal of the perfect mind in the perfect body. This is despite the fact that the development of science proved conclusively more than two hundred years ago that the perfect body is a myth: we are all a unique combination of mental, physical and emotional abilities; and these vary over our lifetime.

Nonetheless doctors and scientists continue their attempts to achieve so-called perfection, and thus to prove their power over nature. Exaggerated media reports are constantly being made about new research which claims to show that science will soon will be able to cure all ills, and even to conquer death itself. The fact that this is simply not the case has been shown by the recent collapse of the so-called “biogen” industry, where investors have now accepted that the claims for the possibilities offered by genetic engineering were almost entirely false.

Religions send out a mixed message too. Christianity among other religions teaches that only God can achieve “perfection”, but at the same time teaches that humans are created in God’s image. The more unusual a person’s appearance, the greater the danger that they will be classified by religion as “ungodly”. This in itself can lead to abuse, violence and even murder. And even when religions view disabled people as being particularly blessed by God, this still conceptualises disabled people as being different.

At the root of the problem is a widespread denial of mortality, a belief that, unlike everyone else, we will never die, nor even become disabled. One reason why disabled people worldwide face much higher levels of violence and abuse than non-disabled people is that we are a visible reminder of the reality of life, rather than the popular fiction.

Perhaps that is why there is also now such an emphasis on detecting and aborting disabled foetuses before they are born. In the United Kingdom, all pregnant women are now pressurised to have their foetuses tested for potential abnormalities, weeks after a decision has been made to go ahead with the pregnancy. Parents who have already bonded with their baby and planned a future as a family are being told that this option is only valid if their child is definitely not disabled.

Women whose foetuses are considered to be at risk of impairment are then counselled to have abortions, with counsellors portraying an extremely negative picture of a future with a disabled child. Pro-abortion feminists have always argued for a woman’s right to make an informed choice, but there is nothing informed about the picture of disability being portrayed to pregnant women.

What is also shocking is that, when women decide to proceed with the pregnancy regardless and are able to resist the continuing pressure to abort, the tests are often proven to be wrong. Fear of impairment appears to be reason enough for doctors to pressurise a pregnant woman to abort a wanted child. Disability rights activists who question this policy are portrayed as being anti-abortion and therefore anti-women.

Of course, feminists in the United Kingdom, including disabled feminists, have long argued that women should have the right whether or not to proceed with a pregnancy. But feminists have also argued that all lives are equally important, and are directly opposed to abortion on the grounds of gender. At the least, then, the request for testing should come from the pregnant woman herself, and counselling both before and after testing should be honest and appropriate.

And if we allow this, should we not also allow abortion on the grounds of gender? Should parents be forced to give birth to children of an unwanted gender, if abortion on the grounds of unwanted physical and mental characteristics is allowed.

Perhaps it is not surprising, in the circumstances, that so many disabled children are abandoned at birth. Parents have already been taught by their doctors that such children are in-valid, less than human. It is not surprising either that in France recently a woman successfully sued a hospital for not testing and aborting her disabled child before birth.

But the truth is that no one can guarantee that a child will not become disabled, either during birth or later in childhood. The only guaranteed way to avoid having a disabled child is not to have a child at all, yet this message is never heard from the doctors.

Perhaps it is more surprising that doctors are still actually creating more disabled children than they destroy, through experimental treatments to keep premature babies alive who would otherwise have died. Disability rights activists have no disagreement with this. However, it does throw an interesting light on the motives of the doctors concerned.

When a child is kept alive who would otherwise die, the power of the doctors over nature is confirmed. When a child is born who is “abnormal”, though, and who is incapable of being “cured”, the powerlessness of doctors over nature is revealed. The abortion of disabled foetuses seems solely aimed at hiding doctors’ lack of power.

Anyway, we will no doubt return to this subject in the discussion session, but now I will move on to the next image. For those of you who are visually impaired, the image shows a fashion doll dressed in a skirt and blouse and red glasses, facing outward against a white background. Behind her are a child's computer toy and a doll's table on which rests pieces of paper and a plastic doll's pen. The text reads:

"I invent and administer tests to classify disabled people by what I think are their inabilities. Then I judge the minimum level of benefits and services that I think they need to survive."

The administrative model of disability is very closely linked to the medical model of disability: one cannot exist without the other. The medical classifications assigned to an individual disabled person are then used to assign a classification for entitlement to benefits and services. These classifications, though, are based on “inability” as opposed to “abnormality”.

In order to access benefits and services, disabled people are forced to provide administrators with intimate details of any difficulties that we experience as a result of our impairments. And since there is no room within this model for the effects of people’s conditions varying from minute to minute, hour to hour and day to day, disabled people are forced to focus on the most difficult times of our lives in order to provide the information required of us.

As with the charity model of disability, this robs disabled people of our dignity, self-respect and right to self-determination. And as disabled people are seen as beggars in this context too, there is an obsession with limiting the help available to the absolute minimum needed to survive. Inevitably, many disabled people do not receive even this level of entitlement, both because the system is too difficult to navigate and because the experience is too negative for many to cope with.

The administrative model of disability also highlights the fact that the majority of state spending on disabled people is actually spent on the non-disabled people who administer the services provided to us. (The same, of course, is true of charitable spending.) The administrators enjoy good salaries, guaranteed annual pay rises, extensive employment benefits and social status. The medical profession enjoys even higher salaries and social status. Meanwhile the benefits paid to disabled people are not enough to raise us out of poverty.

Equally, the social care workers who actually provide direct care and support to disabled people are low-paid with few employment benefits, and their jobs are viewed as being extremely low-status. And the healthcare workers who provide the most useful treatment - listening therapies, physical therapy, pain management and “alternative” therapies such as acupuncture - are again the lowest paid workers and with the lowest social status in the medical world.

This leads us on to the next image and the social model of disability, which is in direct opposition to the other conceptual models. Whereas disabled people are seen as being abnormal, as “other”, within the charity, medical and administrative models of disability, within the social model all human conditions are viewed as being normal. Impairment is recognised as a human condition that will be experienced by all of us at some point during our lives. Disabled people then are seen simply as members of society like any other.

Within the other models of disability, impairment is conceptualised as a personal problem which inevitably causes social exclusion. Within the social model of disability, though, impairment is simply a normal part of life, with disabled people able to participate fully in society if appropriate adjustments and adaptations are made. Social exclusion is then revealed as being created deliberately by society rather than resulting inevitably from the individual’s condition.

To give a very simple example, using the analysis inherent within the other models of disability, a wheelchair user is denied access to a public building because their impairment prevents them from walking into it. However, using the analysis offered by the social model of disability, a wheelchair user is denied access to a public building because the architect has failed to provide ramps, lifts, wide enough doorways and so on. Exclusion is revealed as having been artificially created by social design, rather than resulting from personal impairment.

Within the social model, then, the barriers to disabled people’s full participation in society are recognised as being society itself rather than ourimpairments. If impairment is accepted as a normal part of daily life, it is argued, then society can be arranged in such a way as to allow full participation by all.

The supremacy of the medical model is then revealed as being fundamental to the suppression of disabled people’s rights. Only by continuing to portray impairment as abnormal, as “other”, can the exclusion of disabled people be justified. It does not seem possible that non-disabled people would continue to support social exclusion if they realised that they were also excluding themselves, that they were actually no different to disabled people.

Last night a television documentary series about families with disabled children began in the United Kingdom. The title of the series? “Born to be different.” But different from whom? Disabled children do the same things as all children: they eat; they sleep; they play with their friends; they go to school; they enjoy family activities. The only real difference in their lives is the amount of medical intervention that they experience.

Attracting the experimental attention of doctors is clearly not something that disabled children are “born” with. But the title reveals the continuing portrayal of disabled people as being different, abnormal, “other”, and the widespread belief that these qualities are innate rather than being assigned to us by society.

So, the next image shows an Amazon action doll with no legs, using a wheelchair, facing outward. Behind her are photographs of disabled people campaigning for civil rights. The text reads:

"I fight against prejudice, discrimination and disabling environments. I fight for equal rights legislation and better health and social care provision. I also fight to eliminate the poverty, abuse, violence and war that cause the majority of impairments."

Here the image shows disabled people helping ourselves, along with our non-disabled supporters. Our goals are civil rights, self-determination and independent living. We understand that the disabling factors in society are prejudice, discrimination, bad architecture, lack of legal and civil rights and inadequate health and social care provision, rather than our own impairments. And we understand that the main causes of impairment are poverty, abuse, violence and war.

This is the only image within the work that represents disabled people. Within the charity, medical and administrative models of disability, disabled people ourselves are invisible, powerless. Despite the fiction that disabled people are the subject of these models, the real subjects are the doctors, charity fundraisers and administrators who control them and who benefit financially and socially as a result.

In fact, it would have been difficult to find disabled dolls to use in the work in any case. An apocryphal story states that, in the UK, a range of disabled dolls was released on to the market for a short time, but were withdrawn because they were viewed as being offensive. This is extremely similar to disabled people’s real experiences, where disabled people are invisible in the worlds of advertising and media because it is felt that people would be offended by viewing images of us.

The teenage doll “Barbie” used to have a wheelchair-using friend called “Share a Smile Becky”, but the doll was not released in Europe and was later withdrawn. An apocryphal story suggests that Becky could not drive her wheelchair through the doorway of Barbie’s house. If true, it would be typical of disabled people’s lives in reality that the doll rather than the house design was withdrawn. Disabled people are excluded from the environment every day because of poor and thoughtless design, rather than the environment - which is after all man-made in the first place – being changed to accommodate everyone throughout our lives.

Being an artist, of course, I was able to get round the lack of disabled dolls by creating my own. You may note here that this doll is the only one whose proportions are “normal” - although they are seen as role models for children, the other dolls have extremely distorted body shapes.

The doll is also clearly sexual: disabled people are stereotyped as either having no sexuality; or as being abnormally sexual. Internationally, a whole community exists of people who find amputees sexually desirable; unsurprisingly, most disabled people find their attentions unwelcome. At the same time, though, we wish to assert our right to be seen as sexual, as well as having the right to make our own relationship choices.

Anyway, I obtained the wheelchair from an action model series - its original user was, of course, the villain of the series. Images of impairment have long been used to denote villainy, corruption and evil, and outside of the disability arts movement, little has changed. The doll would not originally fit into the wheelchair, but I quickly realised that this was because she had prosthetic limbs: her legs were clearly made of plastic rather than flesh and blood! So as with all prosthetic limbs, they were far less flexible than human limbs.

Obviously, in the circumstances, the Amazon doll would want to use a wheelchair as well as walking, since prosthetic limbs are of limited use and are often very painful after extensive use. The wheelchair would thus allow her to go further and faster and to achieve more than her prosthetic limbs.

The final image on the website deals with disabling language. It must be difficult for many disabled people, let alone for non-disabled people, to understand the debates about which terms are considered to be offensive and which terms are not. I have already discussed the use of the word “handicapped”, which is believed to derive from the expression “cap in hand”, in other words, to beg for charity. Disabled people do not want to be seen as beggars but as full members of society.

There is also a huge debate between the use of the phrases “disabled people” and “people with disabilities”. The phrase “people with disabilities” came into popular use in the 1980s, in response to expressions such as “the disabled” and “the homeless”. These expressions were felt to dehumanise people, as only their condition and not their humanity was being referred to. However, for disability rights campaigners, the phrase “people with disabilities” is akin to “people with impairments”; in other words, our impairments are seen to be what excludes us from society, what makes us different. The phrase “disabled people” is then preferred because it is taken to refer to our being disabled, excluded, by society rather than as a result of our impairments.

Another expression that was popular in the United States in the 1980s was “differently abled”. The aim of this expression was to combat the belief that disabled people are less able than non-disabled people. “Differently abled” referred to disabled people often being as able as non-disabled people to do something in a particular context, but achieving this in a different way. Standardised methods of achievement often exclude disabled people, whereas a different, more flexible approach does not. However, with the phrase “differently abled” the question immediately arises: different to whom? If we are all going to experience impairment at some point in our lives, whom are we different from?

So does that mean that we should reject all labels? After all, the only thing that disabled people have in common are our experiences of oppression. Even people with the same impairment have little or nothing in common; while the impairment itself may be experienced completely differently. Our disability community and culture arise from our experience of oppression, rather than our experience of impairment. So ultimately, yes, one day we should reject all such labels. However, the UK disability rights movement currently prefers the expression “disabled people”, because until non-disabled people are able to perceive what is really disabling us, then nothing will change.

Language, of course, can be disabling in itself. For example, in English it is increasingly common to hear something derided as being “lame”. The popular expression “invalid” also means not-valid. Disabled people are continually described as being “victims”, which can be extremely offensive as well as untrue. And within computer language, to “disable” a piece of software or a computer function means to render it completely non-functional.

It is increasingly unacceptable to use racist or homophobic language, and in the United Kingdom it would be illegal to use racist or homophobic language in any official context. Yet when the issue of disabilist language is raised, it is dismissed as “just being words”, and we are accused of being “overly sensitive” and having “no sense of humour”. A child’s skipping rhyme in the UK goes: “sticks and stones may break my bones, but words will never hurt me.”

Sadly, however, words can hurt a great deal. What parent would want to explain jokes or insults about being "lame" or"spazza" to their disabled child? The oppression and exclusion of disabled people by society is currently enshrined in our language, and this needs to be confronted and changed.

It’s nearly time for me to finish now, but I just wanted to say a little bit about some of my other disability arts work. “Fight”, a film-dance piece, is being shown here at the exhibition, and I hope that you have had a chance to see it. “Fight” explores themes of growing up and coming out as disabled, and of developing Disability Pride. It shows the fight for self-awareness and self acceptance which everybody has to go through at some point in their lives. It is also a self-portrait.

“Fight” was performed with a non-disabled performer, Layla Smith, but we wished to show that, in terms of the body, such classifications are meaningless. Sadly this truth was underlined recently when Layla developed cancer, and I am sure you join me in wishing her well.

You can find other examples of my work on my website, ju90.co.uk, including the script of a performance called “Wheels on Fire”. This performance was commissioned by the national Science Museum and the Apples and Snakes poetry organisation, in response to objects in the Science Museum’s collection. The resulting work is about wheelchairs and the way in which society interacts with them. It was performed twice in London in March, and will be performed again in Berlin in September. A DVD of the performance is also available.

Along with my performance and internet work, I also work as a visual artist, and in November I will have my first solo exhibition in the United Kingdom. I hope that I will be able to show this work here too one day, and that today is the beginning of an ongoing relationship with the disabled people’s movement here in Austria. Anyway, I hope that you have found this talk interesting, and I look forward to your questions and contributions.

© Ju Gosling aka ju90 2003