ABNORMAL

ABNORMAL

Presentation given at ADF Belfast on 14 October 2010


First, I want to thank ADF for hosting the Abnormal exhibition in Belfast. It’s great to be here, and to have the pleasure of meeting you all today. I also wanted to thank Leo and Shiro for all their help yesterday in installing the exhibition; I hope you agree that they have done a magnificent job.

The exhibition originally resulted from a residency at the National Institute of Medical Research in London, funded by the Wellcome Trust. The Institute is one of the foremost medical research institutions in the world, and while I was there I worked closely with two scientists, Malcolm Logan and Evelien Gevers. The residency gave me the opportunity to discuss issues relating to science and disability with them over a period of more than a year, as well as to observe and debate with a range of other scientists. The piece Room 147, which you can see on the right as you enter the exhibition, is created from a montage of snapshots of Malcolm’s laboratory.

Images of medical research scientists are often very cliched - the white man in the white coat holding the test tube which contains the meaning of life, or looking down a microscope to see further than ordinary mortals ever will. In reality, research lab environments are similar to office environments. As Malcolm Logan says: "You get the same 'water cooler gossip', the same personalising of the work environment - this might entail placing a furry toy on the end of a test-tube rack rather than a biro, but the principle is the same." However we view them, scientists do not see themselves as gods, but rather as workers much like any others.

In the photographs within Room 147, the colours of the images have been reworked to change them as well as to make them more vibrant. As digital imaging technology has advanced, colour is being used increasingly to make the invisible visible when presenting medical research scientists' findings from their laboratory experiments. Colouring of images to show, for example, 'abnormal' cells in bright colours has become extremely common.

However, here the work also reflects the fact that many of the colours associated with the international Disability Arts movement are brighter than is usual in Western Art. Artist David Batchelor has written in his book Chromophobia that, in the classical tradition, bright colours have traditionally been associated with "the feminine, the oriental, the primitive, the infantile, the vulgar, the queer or the pathological" (pp22-23). In the classical palette, muted colours reflect the belief in the importance of the rational mind and the restrained body. In contrast, disabled artists often celebrate the irrational mind and the unrestrained body, and our colour palettes echo this whether or not the subject of the work has anything to do with disability.

Moving on, Abnormal 1, the piece that is featured on the exhibition postcards, was inspired by my very first visit to the National Institute of Medical Research, when I was participating in a bioscience course for artists at Guy’s Medical School, organized by the art-science organization Arts Catalyst. At the end of the course we had a field trip to the Institute, and watched presentations by a range of leading scientists. I was very struck by the fact that medical photographs of people with a range of conditions were used to illustrate some of the talks, without the subjects of the photographs apparently having any say in their use to entertain and educate us.

In particular, the so-called ‘abnormal’ children who had been photographed naked or in their underwear looked at best embarrassed, and at worst were clearly experiencing the camera as abusive. But I seemed alone in questioning why photographs were being used in this way, and indeed whether the photographs had ever been necessary to ‘monitor’ the subjects’ conditions in the first place. All around me, the other, non-disabled artists were asking eagerly ‘what’s wrong with them?’. So in Abnormal 1, I highlight the fact that, in the 21st century, images of disabled people mostly remain confined to medical and charitable images. These images are created and owned by non-disabled people, and even today the subjects rarely have any control over their composition and use.

From the birth of photography onwards, medical research scientists, doctors and related professionals such as orthotists and osteopaths have recorded images of their patients photographically. This has not simply been for private research or record-keeping, but also for publication and performance in the arena of the lecture theatre. Although it appears to go unnoticed by the viewer — the voyeur — in general the eyes of these photographic subjects either look out with despair, embarassment and a deep sense of disempowerment, or appear to be disconnected and dissociated from what is happening to them. Perhaps it is as much for this reason as it is to protect the subject's anonymity that the eyes are often covered up in the final photograph. In my photograph, the eyes are covered by a fox mask which also acts as a blindfold.

Abnormal 1 also reflects eugenical science, a recurring theme within my exhibition. One of the reasons for the rise of the eugenics movement in the 19th century was the belief that, if we have evolved from animals - Darwin's principle of 'natural selection' - then we can easily return to an animalistic, 'primitive' state if we do not actively take steps to avoid this. Imperialist countries like the United Kingdom – the so-called 'Great' Britain – then used the belief that what they called less 'developed' peoples were close to an animal state in order to justify their oppression and genocide as part of the (quotes) 'natural order'.

For disabled people, the belief that natural selection depends on the, quotes, 'survival of the fittest' continues to have serious consequences. It has been used to justify the segregation and forced sterilisation of disabled people across the developed world - and their slaughter in the Nazi extermination camps. The fact that disabled people are still seen as being closer to an animal state than other human beings is reflected in the fact that, even in the United Kingdom, disabled people do not yet enjoy full human and civil rights.

Although scientists themselves discredited eugenical science long ago, in the 21st century, medical research is often still driven by the hunt for the genes and other conditions which are seen to create - but which more accurately only contribute towards - abnormality and impairment. This is generally driven by the desire to eliminate that abnormality in the future. To date, this has most often been effected by hunting for genes or other signs of abnormality via foetal testing. When test results are 'positive', abortion of the affected foetus is seen as desirable. Because both doctors and medical research scientists tend to define disabled people by our condition, it is easy to feel as if we are scientists' prey, so again, the fox becomes a metaphor for disability.

To add another layer of meaning, though, the spectre of animal testing lies behind most medical research. Even where scientists are working with cell lines, these have originated with laboratory animals. Today, though, this research takes place behind locked doors and is hidden from view: only the shadow remains. So the animalistic shadow within Abnormal reflects both eugenical science and the use of animals within medical research.

The use of both animals and humans as research subjects is also a theme within the video piece Raison d’Etre. Cage bars rattle, but we don’t know who is behind them, or which side of the cage the camera is on. However, all of us - artists, scientists, accountants and even surfers - live in cages, of our own or others’ making. Some of us are happy to remain there; others are not. Something that is fundamental to the practice of both art and science is the questioning of deeply held beliefs about life, also known as 'facts'. Throughout history, scientists have faced imprisonment and death because they have challenged everything from a belief that the earth is flat to the 'fact' that it was created in seven days. Both artists and scientists are expert in rattling cages.

Although we are viewed as being polar opposites, my residency at the National Institute taught me that artists and scientists have a great deal more in common than we imagine. We are both concerned with understanding the meaning of life; we are both concerned with close observation of life in order to record it and derive meaning from it; we both depend on our imagination and creativity to develop our work; and we both require a personality - and probably a genetic heritage - which allows obsessive and compulsive behaviour in order to meet the requirements of our practice. Oh, and we're both - Trust Fund babes apart - obsessed with money, because our ability to work depends on it!

As with Abnormal 1, the use of science to eliminate so-called abnormality is forefronted within the piece Design4Life. Here, a scan of a foetus is surrounded by an A-Z of qualities that any parent might desire for their child. However, all of these are qualities that any child could possess, disabled or not. Early images of foetuses in the womb have taken on an enormous significance in today's society. Pregnant women are advised to have all available foetal tests, with the national health watchdog organisation charged with ensuring that every foetus is checked in at least 11 different ways. This is despite the fact that these tests take place after the time when women have decided in principle whether or not to continue with their pregnancy i.e. AFTER they have decided that they want to have their baby, and whether or not women have asked for them. In a very real sense, these images are used to help to decide whether a foetus is 'normal', and therefore worthy of life, or 'abnormal' and not.

This government policy has the aim of reducing the financial cost to the state of medical and social care for disabled people through the resulting increase in abortions where tests predict a high probability of impairment. Women have widely reported that they have been coerced into taking these tests, including tests that can endanger the foetus if the first tests show a risk of impairment, and that 'counselling' following so-called 'positive' test results has focussed heavily on the desirability of abortion. This has nothing whatsoever to do with a woman’s right to choose. Women are warned not to tell others of their pregnancy until these tests are completed, giving the impression that their foetus is not 'valid' until it has been sanctioned by science. This is despite the fact that the tests are rarely definitive; instead, they mostly assess 'risk'. And they cannot tell the extent to which a child will be affected by an impairment, if at all. They also offer the dangerous illusion that having a disabled child is a choice - in reality, most children acquire their impairments at birth or in early childhood rather than in the womb.

In contrast, the genetic screening of embryos before implantation has brought the ability to parent to women who previously had to undergo a succession of miscarriages in an effort to have a child, or who lost their children at birth or in early childhood. A very few genetic illnesses are caused by a single lethal gene which is easy to identify and screen out. Women who are desperate to have families, and women whose family experiences have been very badly affected by genetic illness, have welcomed this development with relief. However, our belief that scientists are all-powerful has led us to confuse these scientific processes with so-called 'designer babies'. Although it is actually impossible, we believe that, quite soon, technology will allow us to choose our children's intelligence, appearance, personality and sexual orientation. Since we have many concerns about this, we have decided that scientists - and women - must be tightly regulated in what they are allowed to do. This continues to hamper important research and to restrict women's choices to be mothers.

Eugenics are reflected again in the work Out of the Flesh, which shows the words ‘In bred’ in red in the shape of a dog’s bone against a white background. There is an old English saying that goes "What is bred in the bone will never be out of the flesh". This saying has long been associated with the upper classes and with snobbery. Today, though, we are being led to believe that our genes do in fact govern our destiny. The original eugenics movement was dominated by animal breeders, particularly racehorse breeders. Today, research shows that racehorses' speed and racing success bears little or no relationship to their genetic heritage. Ideas of 'good breeding' are best left to dog lovers.

In terms of the colours used within Out of the Flesh, red and white are the colours which are most closely associated with medicine. In particular, we associate them with the red cross or red crescent of the volunteer medical services, but the same symbols are also widely used simply to symbolise a nurse. Red and white are colours which reflect the sterility of the medical environment - white sheets, white walls, white bandages etc - and the colour of fresh blood. There is a tension between the red and white - the white is always struggling to contain the red.

Abnormal 2, which is another text piece, was inspired by my model card – I am represented by the character model agency Ugly. Every model has an advertising card which lists their physical attributes – hair and eye colour, height, shoe size etc etc. Within this work, though, the descriptions are split up into groups of three letters. Thanks to medical research scientists, we now know that there are four 'bases' which go to make up our DNA: adenine, guanine, cytostine and thymine (A, G, C and T for short). These bases appear in groupings of three: the genetic code is written in triplets. These four bases can be seen as being analogous to the four different colours of ink that are conventionally used in colour photographic printing - Cyan, Magenta, Yellow and Key (Black) - and which are collectively referred to as CYMK. All other printed colours are made up from these four building blocks of colour. In the work then, the letters are variously printed in these four colours.

The format in which the results of DNA profiling are presented can be meaningless to the non-scientist. To the scientist, though, apparently random collections of letters can be interpreted to obtain detailed genetic information. This information can in turn be used to determine whether or not someone carries a gene associated with a particular impairment or medical condition. It can also be used to identify an individual from genetic material such as a hair or saliva. In the same way, if you look carefully, you can read a description of my body including my so-called abnormalities.

Because of developments in genetic research, people in the developed world have become obsessed with the idea that genetic profiling can tell us how long we are likely to live and how we are likely to die. Tests are now being offered over the internet that claim to be able to tell us about our susceptibility to a growing number of illnesses. The information contained in a micro-tube is believed to be able to tell us our destiny. In contrast, scientists themselves know that life is never this simple. For example, hundreds of genes have already been identified that are linked to cancer; there is no one 'cancer gene'. And simply carrying a gene does not mean that it will be activated; cases where one of identical twins develops a genetic illness and the other does not teaches us that many other, uncontrollable factors come into play too. But even if we understood and could control all of these factors - which would be impossible - we could still be hit by a bus tomorrow. We can never really know our fate.

The piece Shai, which consists of a toy fairground machine dispensing Chinese fortune cookie fortunes in micro-tubes, reflects this. Shai was the Egyptian God of Destiny. S/he (the god had both male and female incarnations) decided the length of someone's life, and the manner of their death. But scientists are not Gods, and genetic tests are not the voice of God. You are as likely to learn your fate from a Chinese fortune cookie as you are from a genetic test.

The overwhelming point that I am trying to make within the show is contained within the piece Abnormal 3, though, which you can view through the glass as you come up the ramp into the building. Viewed from a distance, the letters simply spell ‘Abnormal’ in blood red. Close up, though, you can see that the word ‘human’ is printed repeatedly within each letter. This point is also repeated in the pocket mirrors, printed with the word ‘Normal’ on the back, which you can take away with you from the show. At the end of the day, we are all human and we are all normal; any other divisions are, ultimately, man-made and false. As the Abnormal badges show, Abnormality is just a label.

Although the exhibition results from my residency at the National Institute of Medical Research, some of the work included within it has different origins. Wheels on Fire 1-6 consists of print versions of projections that were originally produced to accompany my performance Wheels on Fire, commissioned by the Science Museum and the Apples and Snakes poetry organisation. The wheelchairs pictured are part of the Wellcome Collection, stored at Wroughton in Wiltshire. You can see a script, photographs and a video of Wheels on Fire at Battersea Arts Centre on my website (www.ju90.co.uk). I hope that both the performance and the images celebrate the liberation and freedom that wheelchairs provide us with, in contrast to the negative stereotype of confinement.

Helping the Handicapped is a print version of a website that was commissioned by the City of Graz in Austria in 2003, when it was European Capital of Culture. The work aims to explain the different theoretical models of disability that have been developed by the international disability rights movement, and that underpin our work as disabled artists.

The installation Men in White Coats was also commissioned in Graz, this time for their Styrian Autumn festival in 2008. A series of white laboratory coats are printed with different words in blood red: SPECIMEN COLLECTOR * CLEVER * RATIONAL * EXPERT * SUPERIOR * EGGHEAD * GENIUS * JUDGE * HUNTER * JAILER * EXECUTIONER * OMNIPOTENT * GOD. White coats were first adopted by scientists in the 19th century. Doctors later began to wear them too, to underline the scientific nature of their work compared to other forms of healing and therapy.

Despite everything that scientists and artists do have in common as practitioners, within mainstream cultural imagery the white lab coat symbolises power over nature, while the artist’s apron symbolises an emotional response to nature. White coats denote such a high status on the wearer that it is difficult for anyone to have an equal relationship with them. As with the white coat ceremonies which now take place at American medical schools before trainee doctors begin their studies, the white coat conveys on its wearer detachment, intellect, expertise and control. To underline the fact that the traditional white coat’s value is almost purely symbolic, though, in the United Kingdom doctors are now banned from wearing them because the coats actually spread, rather than prevent, infection.

White coats have particular resonance for disabled people. We do not believe that men in white coats have power over life and death, but they can often have power over our lives, determining where and how we live them. If we fail to conform to society’s expectations, whether physically, intellectually or emotionally, men in white coats can come to take us away, experiment on us, or merely hide us from view.

Within mainstream cultural imagery, the white lab coat symbolises power over nature. But within the Disability Arts movement, the white coat reminds us of how little understanding we have of nature, and how very far we are from having the power to control it. In turn, we regard the coat simply as being tomorrow's dirty laundry. And what does the white coat symbolise for scientists? During my artist’s residency at the National Institute of Medical Reseach that led to this exhibition, I discovered that the world’s best medical research scientists rarely wear their white coats at work at all, unless their laboratory is due for a health and safety inspection!

The final piece that I wanted to discuss here has been produced especially for the exhibition here in Belfast. Abnormally Arty is a beautifully detailed architect’s drawing that was produced by the National Galleries of Scotland, to demonstrate to me that they had no space to ramp a temporary exhibit in order to provide step-free access to it. However, as you will see, the obvious solution did not occur to them – simply to move the exhibit itself by just a few feet.In a way, this drawing offers a perfect reflection of what I have termed the Scientific Model of Disability. To summarise the Scientific Model of Disability, disabled people are abnormal, and this is the cause of our inevitable problems. And since normal people aren't disabled, disability is seen as being only a minority experience. Since we believe that scientists are both all-powerful and experts on disability, we believe that disability will very soon be eliminated and most of us will never experience it. It follows that making fundamental changes to society to accommodate disabled people is a pointless waste of money, as it will soon be unnecessary. In the meantime, only an abnormal minority are affected.

How does the Scientific Model of Disability affect the media? In the past, the Charity Model of Disability dominated media representation of disabled people. Disabled people were represented as being the tragic victims of our condition and the passive recipients of charity, or as 'triumphing over tragedy' to lead a semi-normal life. Now, however, the Scientific Model of Disability dominates the media, and by extension our society. Since disabled people are regarded as being an abnormal minority who will soon disappear, it follows that media representation of disabled people is confined to modern versions of the freak show. You may have been as offended as I was by the recent Channel 4 marketing campaign for their Paralympic coverage, Freaks of Nature, but this again simply reflects the Scientific Model of Disability.
Away from the freak shows, the media is driven by what is new, and needs to be seen as cutting edge in order to compete in the market place. As a result the media portrays what it believes to be the society of the near future - a society that has no disabled people within it - rather than the reality. This echoes the general invisibility of disabled people within the Scientific Model.

How does the Scientific Model of Disability affect scientists? The Scientific Model of Disability is NOT scientific, nor does it reflect the views of scientists (although as members of society, scientists are inevitably influenced by it too). But it does affect how scientists have to present their work for funders, as well as creating unrealistic expectations of scientists by the state, society and business. In addition, as a result of the Scientific Model of Disability: Either we view scientists as being selfless, dedicated to improving the wellbeing of us all as they develop life-changing, life-enhancing and life-extending cures, rather than as being motivated by intellectual curiosity and/or economic imperative and/or greed like the rest of us. Or we view scientists as being demented and power-crazed, using their talents to endanger us all by attempting successfully to play God. Scientists therefore need to be rigorously controlled because they are unable to resist their own desire for power and control themselves. The Scientific Model of Disability, then, is extremely unhelpful to scientists, placing unnecessary pressures on them and hampering them in their work.

Does this have anything to do with Disability Equality? Disabled people have made considerable progress towards social equality in the United States and United Kingdom during the past few decades partly because of the development of theoretical models of disability. These have aided our growth in understanding why disabled people have been and continue to be discriminated against, and what will have the most positive and achievable impact on our quality of life in the future. Increasing our understanding will in turn enhance the pace of this progress.

Does it matter to anyone else, though? Yes. Since in reality it is normal to become disabled, and the vast majority of us WILL become disabled at some point before we die (the rest dying prematurely and suddenly), then of course disability issues affect us all. Even if we do not become disabled ourselves, we will witness our friends and relatives living with impairments. Two-thirds of all disabled adults in the United Kingdom have acquired their impairments in adult life rather than being 'born disabled', and this is likely to continue. Most importantly of all, we will be much happier when we recognise the human condition as being vulnerable, mortal, imperfect; accept that we will all experience impairment at some point in our lives; accept that scientists - and doctors - are not all-powerful; abandon the impossible search for perfection; and turn instead to dismantling unnecessary social barriers and improving the quality of life for us all.

I discuss my ideas about a Scientific Model of Disability on the exhibition website, which also functions as a catalogue for the exhibition. You can see the site on the computer within the exhibition, and the address is printed on the exhibition postcards. Every page on the website contains a link where you can email me about it, and there is also an electronic guestbook where you can leave your comments. But now we have time to discuss the exhibition in person, and in November I am coming back to run a workshop here which Leo can give you further details about at the end. Thank you for listening.

Funded by the
wellcome trust

 


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