ABNORMAL

SUPERHUMAN RIGHTS
Colour photograph of Ju presenting her work at the symposium.

Presentation given to the Australian Network of Arts and Technology's
Superhuman: Revolution of the Species symposium on 23 November 2009


Screengrab of slide showing Abnormal 1

I thought it might be helpful to start off with some scene-setting and definitions, especially as we are gathered here from all over the globe and therefore have different understandings of the meanings of some of the terms that I am going to use in this presentation. In particular, I thought it might be helpful to discuss what I mean when I use the term ‘disabled’, especially but not only in relation to my practice as an artist who locates my work largely within the theories and traditions of the Disability Arts movement.

For many people, disabled is a word which means a human being with an incurable medical condition or impairment that makes their body or mind abnormal, defective and second-class. Impairments, also called disabilities, may be genetically determined, acquired in the womb or at birth, or result from an accident or illness later in life. Impairments may also simply be the result of the ageing process, which particularly affects eyesight, hearing, memory and mobility. Impairments may be physical or sensory, or intellectual, or affect people’s mental health - many disabled people, of course, will have more than one impairment.

We call this approach to life the Medical Model of Disability, where someone’s medical condition is believed to define our whole being, somehow making us second-class and, almost inevitably, affecting our personalities too. Traditional stereotypes of disabled people range from the eternal child; to the handicapped person who functions only to bring out the best in other people; to the tragic but brave figure; to the Supercrip who overcomes innumerable obstacles to achieve incredible things; to the beggar; to the crip with the chip on our shoulder; to the unreliable and untrustworthy; to the downright sinister, criminal and evil; to the appalling burden on other people whose life is not in any case worth living.

Screengrab of slide showing Perception I-IV

For artists and activists like myself, however, being disabled means something different entirely. We regard impairment as simply being a normal part of the human condition, whether this is a physical or sensory impairment, a long-term illness or medical condition, a learning difficulty, or a mental health problem. We may be different from the so-called norm, but we are nonetheless perfectly normal. Overall, we believe that our impairments are the least important thing about us. We reject the idea that our bodies and minds are second-class, abnormal or defective as a result of our impairments, and instead we see each and every human as being a unique mix of physical, intellectual and emotional abilities, with no two people being the same even when they share the same medical label. We recognize that all of our human abilities will vary throughout our lifetime, and that almost everyone will become disabled at some point in our lives, often without any warning.

We see no conflict between this approach and Darwinian theories of evolution. Rather, we see the modern human condition as being incredibly complex. The biological ability to run fast, or to see further, is unlikely to be of much practical use in a day-to-day setting, while technology in any case already offers us ways of traveling faster and seeing further than the body ever can on its own. It is our ability to problem-solve, to be resilient, to learn cooperation and interdependency, that will determine our ability to survive in the future, and all of these qualities are developed most highly in and through contact with disabled people.

On a genetic level, we can have no idea what individual genes will contribute to our ability to resist future illnesses; but we do now know that genes have multiple functions, and that it is essential to preserve genetic diversity for the future. You can also argue, of course, that the more severely disabled someone is, the fitter their genes have already been proven to be, since they have been able to survive at all. Medical technology alone is never enough to sustain human life.

Screengrab of slide showing scene from Opening Doors

As a result of our perspective, we accept ourselves as being the equal of everyone else, and take Pride in being the people that we are now, without believing that we need to change in any way. We see no reason to feel sorry for ourselves - we understand that we live in a world where the majority does not even have access to basic healthcare or to a reliable electricity supply. Nor do we feel it necessary to apologise for the fact that our access needs may vary from the majority’s. Instead, we expect to receive an apology if our needs are not being catered for, since we believe that we have as much right to be included in society as everyone else.

We regard the cause of our disability as being modern Western society’s unwillingness to accept the reality of the human condition - we see ourselves as being disabled by the social and environmental barriers that society creates as a result of this denial of reality, and not as being disabled by our bodies. This is why we call ourselves disabled artists, and not artists with disabilities. We see disability as being imposed on us from outside, not as the inevitable result of our defective bodies. We work towards the day when we are simply recognized as being ordinary human beings.

We call this approach to life the Social Model of Disability. It is revolutionary, and we do believe that it represents a very necessary evolution in our way of thinking.

Screengrab of slide showing the Letter Writing Project

To give a very simple example to clarify this thinking further, let us look briefly at an international art exhibit called the Letter Writing Project. This is a supposedly participatory exhibit by the American Taiwanese artist Lee Mingwei, which has been touring internationally for 11 years. The Letter Writing Project formed part of the Enlightenments exhibition at this summer’s Edinburgh Festival in Scotland, curated by the Melbourne-based curator Juliana Engberg. When I visited the Enlightenments exhibition, I discovered that, contrary to its description, I could not participate in the Letter Writing Project because the booth in which the exhibit was contained had been placed on a podium that was accessed by two shiny wooden steps, without even an accompanying handrail.

From the perspective of the Medical Model of Disability, the cause of my exclusion from the exhibit was my own defective body, my inability to climb the steps because of my spinal and other impairments. It was disappointing for me, but inevitable. Using the insights provided by the Social Model of Disability, though, the cause of my exclusion was revealed instead as being the artist’s choice to raise the exhibit from the floor, and his accompanying failure to incorporate a ramp to enable step-free access.

Elsewhere in the exhibition, artists’ films were presented without any accompanying audio description. Again, from the perspective of the Medical Model of Disability, the reason that blind and visually impaired people had great difficulty in accessing and understanding these films was their own defective eyesight. Using the Social Model of Disability, though, we understand that the disabling factor was actually the artists’ failure to supply a sound track containing audio description for those who required it.

Screengrab of slide showing the Charity Model from Helping the Handicapped

In the West today, we live with a cultural construction of reality that is entirely abnormal. Disabled people are segregated and excluded from birth through to old age, without most people even noticing. There are millions of us out there, but we are believed to be very few. Disabled people are regarded variously as the objects of pity, suspicion or derision, the subjects of care, or simply as burdens, but rarely, if ever, as our peers and as full and equal members of society. Disabled people are expected to accept what we are given, not to demand equal treatment as our right.

In the art world, as the example of the Enlightenments exhibition shows, both curators and artists fail to visualize disabled people as being a legitimate and integral part of their audience, even when their work is wholly supported by public funds. Over the summer in the UK, I attended a number of seminars for disabled artists where producers and programmers admitted that they had never worked with disabled people before, and were only doing so now because they had been given a ‘special’ grant for this purpose.

Throughout the world, public funds are spent on the arts without any attempt being made to ensure that disabled people receive a share at all, let alone an equal share, whether this is as artists or as audience members. And yet, whether or not we are able to get a job, we all pay tax every time we buy something in a shop, or use gas or electricity, or pay for any other service - as, of course, do our families and friends.

Screengrab of slide showing Venus of Holton Lee (print on fabric)

Meanwhile images of disabled people within our culture fall largely into one of only two categories: medical and charitable. We are either the subject of medical x-rays and photographs, or pictured as being in need of support by non-disabled people. In neither case do disabled people have control or ownership over these images. Instead, both medical and charitable images are created and used by non-disabled people for their own purposes, resulting in the disabled body being widely regarded as a public body, permanently on display. Anyone and everyone feels that they have the right to demand, and to receive an explicit and polite answer, to the question “What’s wrong with you?” - meaning, of course, “What’s your impairment?”

Screengrab of slide showing images from My Not-So-Secret Life as a Cyborg

If you are interested in reading further about the way in which the disabled body is seen as the legitimate subject of the public gaze, I have discussed this within my website My Not-So-Secret Life as a Cyborg. The site documents my decorating a spinal brace in 1997, and using it to explore the social construction of disability by ‘doing disability’ as performance art, ‘the look’ being an important part of this work.

The cyborg, an semi- or wholly artificial human who is partially inorganic, is a figure that is not only particularly relevant to the symposium here this week, but also to disabled people’s experiences. Disabled people are commonly visualised as being partially inorganic when we use technology to extend our abilities. For example, wheelchair users are described as being "confined to a wheelchair" and as having “been in a wheelchair for twenty years”, which gives the impression that we remain in our chairs even whilst asleep (we don’t).

And disabled people's use of aids such as sticks, braces and wheelchairs is regarded as being fundamentally different in nature to the other ways in which we rely on technology to live our daily lives in the West. While aids such as wheelchairs are seen as being unnatural, the use of cars, bicycles, phones, computers, domestic technology such as vacuum cleaners and washing machines - all these, in contrast, are seen as being entirely natural. Equally, the use of chemicals such as contraceptives to alter the body is seen as being entirely different to the use of insulin or anti-depressants. Our use of augmentations is seen to make us second-class, cyborg, Other, and our augmentations are similarly stigmatized.

Screengrab of slide showing An Artist's Manifesto for Accessible Hotels

Cyborgs, as well, are visualised as being less than human within popular culture, and therefore as not being deserving of human rights. Disabled people, meanwhile, lack human and civil rights throughout the world. It was only recently that the UN ratified a Charter on the Rights of Disabled People - and then the UK refused to adopt three of the most important clauses within it.

Cyborgs, too, are often seen as being a threat to humans, and so as requiring containing and controlling. Disabled people are also seen as being dangerous - in popular culture, physical impairment is used as a metaphor for evil, while in real life, people with mental health needs are stigmatised as potential killers, and are forcibly drugged, restrained and imprisoned.

Further, cyborgs are seen on the one hand as being asexual, genderless, and on the other as being extremely sexual - think of Fritz Lang's Metropolis, or the Star Trek character Seven of Nine. This is echoed, not just in the perception of disabled people as either being asexual or exotic and deviant lovers, but also of disabled people as being genderless - to give an obvious example, public toilets are commonly divided into those for Men, Women and the Disabled.

Screengrab of slide showing wheelchair barred symbol from Helping the Handicapped

Would real-life cyborgs, the so-called augmented humans of the future, fare any differently? In a world where so many people are still starving, we can assume that augmented humans would, at least in the foreseeable future, be a small minority. But can we assume, too, that this minority would have exactly the same needs as other people? Within the art world, it is not simply that artists and curators fail to recognize disabled people as being human, as being members of an audience that they need to target and include. There is also an unwillingness, and sometimes a downright refusal, to change working practices to accommodate the needs of diverse bodies.

I am pleased to say that the Edinburgh International Festival has recently made a commitment to look again at the way in which it commissions and curates work. However, more recently I was denied access to an event in the UK organized by the Live Art Development Agency, after I pointed out that the structure of the event would prevent a large number of disabled artists, including myself, from participating, even though we were the ones being specifically targeted by the organisers. Rather than recognize either my expertise or my right to have my needs met, I was told that I was in any case now unwelcome for being ‘unsupportive’, and my invitation to attend the event was withdrawn. Would augmented humans of the future have a better experience?

Screengrab of slide showing Wheels on Fire 3

Even if the augmented humans of the future share the same physical needs as other humans, there is still no reason to assume that they will be treated as the equal of others. Repeated surveys of employers worldwide have shown that they would not give a job to someone with a history of mental illness, however well the person was at the time of their application, and however well their illness was now controlled. We seem to assume that the majority of the population, who would not have augmentations themselves, would welcome an augmented elite, but this assumption is not based on any practical evidence.

Rather, we live in a world which is organized in a way that best meets the needs of capitalism. Disabled people do not have needs that are unique. For example, wheelchair users, mothers with young children, and old people all require step-free access to the environment. Children, small people and wheelchair users all need the environment to be organized in such a way that they can reach door handles, lift buttons and letter boxes; can see over counters and reception desks and out of windows; can view art work when it is displayed in cabinets and on podiums; and so on and so forth.

Screengrab of slide showing  Wheels on Fire 1

But children, mothers of infants, disabled people and old people are not perceived to be part of the workforce, and therefore are not regarded as forming a significant proportion of market forces either. As a result, capitalism sees no reason to create an environment and to organize society in such a way as to include us. Unless augmented humans were regarded as forming a key part of the workforce rather than simply as having capital to spare to purchase augmentations, and unless physical access was essential for them to act on market forces, it is unlikely, then, that the world would be reorganized to include them if their physicality was changed by their augmentations.

The example of the wheelchair underlines the fact that society is not prepared to make even the simplest adjustment to meet the needs of a minority population, and that logic does not even enter into the equation. We recognize the wheel as being the single most important invention in the history of mankind. We have remade our entire environment to accommodate its movement over our landscape. We regard car ownership as a mark of status, and the need to walk everywhere as an indicator of poverty. And yet we are not prepared to do anything to make our environment wheelchair friendly, and indeed we regard wheelchair use as a tragedy, even though we are all likely to need one at some point in our lives. The wheelchair is the single most important body augmentation that we are ever likely to invent. There is nothing scientific in society’s response to it.

Screengrab of slide showing Cardigan Bay (print from Pembrokeshire Project)

For artists like myself, then, who identify as being part of the international Disability Arts movement, disability is a social and political construct. We regard ourselves as having a perspective on life that is more realistic - more scientific - than the mainstream of society and the art world. The subject matter of our work is as wide-ranging as the rest of the art world’s, but our approach is different, and this influences every part of our art practice.

For example, we believe that there is no such thing as a divide between the mind and the body. We also believe that neuro-diversity should be celebrated, rather than a rational mind being a goal to strive towards, and in general we see no reason to restrain either our minds or our bodies.

This in turn affects our use of colour, since classical Western colour palettes have traditionally reflected the 'Cartesian' mind/body divide and bright colours have been rejected as being exotic, feminine and naive. The subject matter of work that is defined as Disability Art may relate to the personal or political experience of impairment and disability, then, but equally may not and may be characterized instead by more subtle factors such as colour choice or simply our approach to our subject matter.

Screengrab of slide showing Crimson Tide (print from Holton Lee residency)

As disabled people and as disabled artists, what we have in common is our experience of exclusion and discrimination, not our experience of impairment - we are all very different even when we share the same medical label. We certainly reject any suggestion that our art is made second-class by our impairments. Rather, we argue that we have a more intense relationship with the world around us because of our impairments, which if anything gives us an advantage. For example, those of us who see less clearly, look more closely.

However, our movement is defined by our philosophy and our approach to making work, not by our impairments. The Disability Arts movement is not a self-help support organization, nor is our art a therapeutic rather than a creative process - valuable as art therapy undoubtedly is. Some of us identify as ‘Outsider’ artists, but the majority of us do not. We are not simply a visual arts movement, but encompass every art form, and many of us practice across art forms rather than simply working in one area. Melvyn Bragg has defined our movement as being ‘the last Avant-Garde’ - but it might be more accurate to describe us as being the first truly post-modern art movement.

Screengrab of slide showing Home Page

I am going to end this section of my presentation by referring you to work of mine that discusses these issues in more detail, since I have no more time to expand on them here.
Helping the Handicapped is a website that was commissioned by the City of Graz when it was European Capital of Culture in 2003, and the work has since been shown in print form at exhibitions in the UK and the United States. As well as the Social and Medical Models of Disability, the work looks too at the Charity and Administrative Models of Disability, and at issues surrounding the use of language.

My Holton Lee Blog records my residency at the National Disability Arts Collection and Archive at Holton Lee in Dorset on the southern English coast. Here you can find essays about the definition of Disability Arts, the future for the Disability Arts movement, and the relationship between Disability Arts and disabled people who do not identify themselves as such. You can also, of course, find out more about the National Disability Arts Collection and Archive, and see the land art and other work that I’ve been developing as part of the residency.

The Letter Writing Project documents my efforts to engage the artist, the curator and the International Festival in a dialogue about the exclusion of disabled people from the exhibit, and the resulting intervention that I created. As with all of my work, you can find links to these pieces and to My Not-So-Secret Life as a Cyborg from my Home Page at www.ju90.co.uk

Screengrab of slide showing still from Fight

As you can guess, the international Disability Arts movement has a perspective on science and technology that is, if not oppositional, then more problematic than the mainstream’s. Overall we believe that the invisibility of disabled people’s experiences has had a major impact on the discourse surrounding post-humanism, since disabled people are acutely aware of the limits of medical science and technology today.

To give a few brief examples, disabled people are aware that, today, medical technology cannot create an artificial hip or knee joint that will last longer then 10-15 years. Since replacing artificial joints is also an extremely problematic process that inevitably results in bone loss, doctors are forced to leave joint replacements until as late in life as possible, when people are also naturally less mobile so put less strain on them. Disabled people are also aware that the use of spinal rods, implanted into damaged spines to strengthen them, is made more difficult by the fact that even the most high-tech alloys tend to snap after long-term use. Replacement joints, as with spinal rods, can offer a massively improved quality of life to those who receive them, but at the same time make us doubt that the non-impaired body can really be improved on by the use of technology.

Screengrab of slide showing Shadow Self-Portrait from Holton Lee residency

Whatever the discourse around bionic arms, the human arm is able to carry out such an amazing range of sophisticated movements and tasks that it is extremely unlikely that a prosthetic alternative will ever come close to matching it. And whatever the level of opposition to amputee athlete Oscar Pistorius’s wish to compete in mainstream events on the grounds that his prosthetic legs give him an unfair advantage, in reality, running with prosthetic legs will always be a more painful and problematic way of competing. Meanwhile cochlear implants offer a welcome option for some people with hearing impairments and increase choice, but many Deaf people simply identify as part of a linguistic minority of Sign Language users, and would sooner shoot themselves than choose a brain implant.

Screengrab of slide showing Jaipur foot

The most significant development in prosthetics to date remains the Jaipur foot, developed for victims of landmines by Ram Chander Sharma in 1968. The Jaipur foot is waterproof and tough, enables the user to squat on the floor as well as to stand and walk because, unlike Western prosthetics, it allows for natural movement of the foot, and can be fitted quickly at a total cost of less than $40 US dollars. The technology required to manufacture the Jaipur foot is based on traditional craft skills using small local production methods, and in the past 40 years over 900,000 people have had their lives transformed as a result of it. Of course, banning land mines would have had even more impact on their lives.

Screengrab of slide showing stag print and antler blog from Holton Lee

Away from prosthetics, disabled people remember too that the heart, which is in theory the simplest as well as the most critical organ in the body, has proven extraordinarily difficult to recreate artificially. To date, the best that scientists can produce is a pump that can take over in the short-term while a would-be transplant recipient waits for a donor, or a pump that can work alongside someone’s own heart to support it and occasionally to allow it to heal itself.

Disabled people also remember that the body is characterized by its built-in opposition to being upgraded, which is why people who receive organ transplants need to take massive doses of immune-suppressant drugs every day in an effort to stop their bodies from rejecting the donor organ. Some of the research into alternatives to this daily drug-taking holds exciting possibilities for the future, but other drug research that originally looked promising has had disastrous results in practice, so at present we are not even cautiously optimistic.

Screengrab of slide showing Psychedelic Tree 1 (Holton Lee residency)

In general, disabled people have a perspective on drug-taking that questions the possibilities offered by so-called ‘smart’ drugs for upgrading the human body, since we are aware that all drugs have effects other than those that we take them for. We can call these effects ‘side-effects’ if we like, but in fact they are just part of the range of effects caused by a particular drug.

Disabled people make what I would call a negative choice to take medication, since drugs that may shorten our lives in the long term may still offer us our only opportunity for life in the short term. We may also accept trade-offs between risks and benefits in order to live our lives to the fullest.

Would we, however, take drugs on a long-term basis if they were not in some way essential, to try to enhance our abilities without any idea of the long-term risks or proof of the drugs’ safety? Most of us would say not, since we remember how many other drugs, from Thalidomide to anti-inflammatories, turned out to pose dangers never guessed at during their development despite extensive testing. We also doubt very much whether many parents would give their children unproven ‘smart’ drugs to improve their intelligence, given the recent resistance in the UK to giving children the MMR vaccine despite many studies proving it to be entirely safe.

Screengrab of slide showing Design4Life

As members of the Disability Arts movement, we look to society rather than to scientists to reduce the incidence of impairment. We recognise that the provision of good quality health care to pregnant women, new mothers and babies will have the biggest impact on infant mortality, rather than technologies that operate in the womb and at birth. We recognize that the lack of adequate and appropriate care and support is what makes the lives of disabled people, parents and carers miserable, not the impairment itself.

We recognise that the banning of landmines will have the biggest impact on reducing the number of people without limbs, rather than regrowing limbs in the lab or genetically altering foetuses. We recognize the importance of improving health and safety on the roads and in the workplace, rather than stem cell research, in terms of tackling the level of spinal injury. And of course we recognize that war, poverty and pollution are the three biggest causes of impairment worldwide, and that working for peace, responsible disposal of waste and for a more equitable distribution of the food supply will have more effect on reducing impairment than any amount of intervention by doctors.

We do, of course, recognize and welcome the continuing advancements of medical science today. However, we are also aware of the fact that new challenges arise continually; there is no status quo from which levels of illness and impairment can gradually be reduced. We only have to look at the rise of antibiotic-resistant illnesses, from multi-drug-resistant TB to MRSA; at the ability of the parasites such as the one that causes malaria to adapt to resist chemical treatments; at the growth of new illnesses, particularly retro-viruses such as HIV; and at the impact of catastrophes caused by climate change and pollution. We need the advance of science simply to maintain the balance that currently exists.

If someone could wave a magic wand then, like many other people, we might choose to make changes to our bodies. However, we know better than to mistake science for magic. In the absence of magic, we see no reason not to accept ourselves more or less exactly as we are. There will always be people with impairments who are unhappy with who they are, as there will always be non-disabled people who believe that their lives would be different if only their bodies were. As an international art movement, though, we believe in embracing life as it is, in all its beautiful diversity; we do not want to lose the characteristics that make us unique. And our artists include people with every type of impairment, and every level, including artists who have little or no control over their bodies at all. We don’t reject medical intervention - indeed, many of us only live as a result of it - but we don’t consider that we need it to make us ‘normal’ or happy, just to live life as fully as possible.

Screengrab of slide showing Men in White Coats being installed in Austria

To summarise, then, as artists and activists we do have some doubts about the likelihood of technological enhancements offering as much as is predicted for the body at a time in life when it is already free of impairments, whatever the possible advantages for disabled and older people. We also doubt very much that impairment will ever be a thing of the past, and that medical intervention will ever come without a more or less high accompanying price. Rather, both medical intervention and technologies, and, crucially, other technological and social developments, mean that the impact of our impairments on disabled people’s quality of life has never been less - which makes it even more surprising that many Western societies are now fixated with eliminating genetically linked impairment through a programme of foetal testing and abortion, and despite the risks of losing valuable genes along the way.

In the West at least, we live in a culture that is so body dysphoric that it is now fixated on death. We believe that impairment is so unbearable, so abnormal, that we would rather terminate our lives if, or even before, it ever happens to us. We would rather terminate a wanted pregnancy than give birth to a child who simply lacks a limb or has a cleft palate. I am completely committed to a woman’s right to choose, but this has nothing more to do with the survival of the fittest than the deaths of millions of children each year from starvation and malaria. Ninety per cent of women in the UK choose to end their pregnancy if they know that their child has Down’s Syndrome, despite the fact that we now know that people with Down’s can lead full and largely independent lives. And all this is despite the fact that, as I have already said, impairment has never impacted less on our ability to have a good quality of life than it does today. The fear of disability is not based in reality, but is rooted in our body dysphoria.

The motivation for much of the research funding into body augmentation, whether this is augmentation by technology or drugs, is also related more to death than it is to life, to what is commonly called defence, and is more aptly described as war. The means to operate machinery by thought makes it easier for fighter pilots to dodge weapons and to fire their own first. The means to extend the body with augmentations makes it easier for soldiers to shoot before they are shot at, since their weapons can become part of their body. The means to think more quickly - at least in the short term - makes it easier to out-manoeuvre the enemy when an army battalion has already been in the field for days. This is, unfortunately, yet another reason to doubt that the augmented humans of the future will be in control of the world, rather than being under the control of the military.

Screengrab of slide showing Dash (Surfers Against Sewage residency)

In any case, though, for the majority of the population augmentation will continue to be an exo-technology, as it is today. We are already the augmented humans of the future, the elite minority.

Microscopes now enable us to see the basic building blocks of life; telescopes enable us to see into different universes; and x-rays and scans enable us to see into every level of the human body. What need do most of us have of bionic eyes? A massive range of tools are available for us to carry out increasingly sophisticated tasks. Why would we wish to limit ourselves by bonding to just one of them? Mobile phones enable us to store thousands of contact and other details and plan years ahead, and those same phones can remind us when we need to do something. What need do we have of drugs to improve our memories? Those same phones also enable us to talk, and to swap images, with people all over the world. Why would we need to leave the body behind in order to connect with each other? And even a mouse’s brain remains more powerful than any computer processor currently in existence.

Screengrab of slide showing Wetsuit (Surfers Against Sewage residency)

Exotechnologies also offer the benefit of easy upgrading. There is no difficulty in replacing a faulty telephone, as there is in replacing a faulty brain implant. And faulty or not, would we really want to keep the same augmentations for life, when many of us now replace our phones every year?

And all this is besides the fact that, as disabled people can testify, surgery both hurts and is always accompanied by dangers. Like it or not, we are bio-organisms, and healing will always take time and involve the risk of complications and infections.

Screengrab of slide showing Abnormal 2

As I have said already, though, disabled people’s voices are largely invisible within society. Since our impairments are believed to define us and to make us defective and second-class, our opinions and perspectives are not seen as worthy of being heard.

The exclusion of disabled people’s experiences from debates about science and technology has created what I have termed a Scientific Model of Disability. This is the theoretical Model that explains why we as a society have not made any real attempt to change in order to accommodate the varying needs of older and disabled people, despite now having the expertise that would enable us to do so, and despite ageing and disability being conditions that will in reality affect each and every one of us.

For example, in the UK, building laws mean that all new buildings need to be made fully accessible, while expert advisers and user groups work with architects and builders to achieve this. Yet despite this I could name a long list of new arts buildings in the UK where the access remains problematic for most disabled people, and impossibly difficult for some.

Screengrab of slide showing Lazarus (print on aluminium)

To summarise the Scientific Model of Disability: encouraged by the media, we believe that science is all-powerful and will, some day soon, be able to offer a cure for all ills and eliminate so-called ‘abnormality’ forever. We believe that these developments are ‘just around the corner’; or ‘will happen in no more than ten years’ time’; or ‘are already happening today in clinics in India and the results can be seen now on Youtube’. This misplaced belief negates the need to take personal responsibility for our health or for changing our society.

As a result of our faith in science, we do not believe that disability is something that will affect all of us at some point in our lives. Rather, we believe that it is the current experience of a small minority who will soon be cured themselves, so we have no real reason to make changes to accommodate people with needs that are different to our own. Let down by religion, we believe that science will make the blind man see and the lame man walk, and will grant us all eternal life.

The Scientific Model of Disability also explains why we have failed to change the ways in which we lead our own lives in order to maximize our health and fitness, even though science has shown us how to do this and we can gain decades of extra life as a result. And it explains why we live without protest in a world which is run in a way that causes impairment levels to rise instead of fall.

Screengrab of slide showing Room 147

This is despite the fact that most medical research scientists do not believe in their supposed omnipotence at all, since their work proves daily that it is not true. In reality, as the old saying goes, the more they learn, the more they realize that they have yet to learn. However, scientists are largely unable to admit this in public, because their ability to attract funds for their research depends on them fulfilling society's demands and expectations.

Within medical research, disabled people are of interest to scientists primarily because we help to advance the understanding of the so-called ‘normal’ human body. Within a Scientific Model of Disability, then, scientists rather than disabled people are central, and so-called ‘normal’ people, not disabled people, are the visible and important ones.

In fact, scientists rarely knowingly meet a disabled person during the course of their working week, either as colleagues or indeed as research subjects, since research is now carried out largely at the cellular level. Despite this, though, and as with the Medical Model of Disability, within a Scientific Model of Disability scientists, not disabled people ourselves, are viewed as being the experts on everything relating to our bodies.

The domination of the Scientific Model of Disability today is directly related to the even greater invisibility of disabled people in the media today than in the past. Previously, the Charity Model of Disability dominated: disabled people were either 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.

However, 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 of the Scientific Model of Disability, the media portrays what they believe to be the society of the near future - a society that has no disabled people within it - rather than today’s reality. 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. This echoes the general invisibility of disabled people within the Scientific Model.

The Scientific Model of Disability is, obviously, NOT scientific, nor does it reflect the views of scientists (although as members of society, scientists are inevitably influenced by society’s stereotypes and beliefs too). But it does affect how scientists have to present their work for funders and government agencies, 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 are therefore believed to 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.

Screengrab of slide showing first letter of Abnormal 3

It is long past time that we recognized the importance and validity of undertaking research for research’s sake, that the furthering of human knowledge is a legitimate end in itself. Bio-research should not need to be constrained by the need to develop ‘cures’, or to generate wealth, or to create immortality. Scientists should not need to have to negotiate, accommodate and exploit our fears about disability and death in order to be able to pursue their work. They need to be able to experiment, to fail, to pursue research without knowing where it is going, or indeed if it is going anywhere at all.

Supported by the Wellcome Trust, I was fortunate enough to have an artist’s residency at the UK’s National Institute of Medical Research between 2006 and 2007, working closely with two leading international scientists. Malcolm Logan is one of the foremost experts in the world in upper limb development, but is honest enough to admit that on the basis of current knowledge, we are nowhere near being in a position where we can regrow a human limb.

Knowing that an axolotl, a unique amphibian, can regenerate its limbs does not bring us any closer to being able to do it ourselves, despite its frequent use by the media to claim to show that somehow human limb regeneration is just around the corner. Indeed, Malcolm’s research has nothing whatsoever to do with this creature. However, as a result of his research into the development of limbs, Malcolm may learn how to regenerate damaged cartilage, making artificial joints less necessary in the first place. And in fact this would particularly benefit people who lack one or more limbs, since they tend to place more strain on their existing joints than other people.

Technology and medicine should not have to completely transform lives in order to be valued. We should not have to believe that disability is an unbearable state, or that science should have to be able to overcome mortality, for medical research to be of purpose. Surely it is enough that we are able to save or prolong lives, whether it is through insulin, heart surgery, dialysis, transplants and transfusions, pacemakers, chemotherapy … and that we now know how to make both life with impairments and the passage towards death comfortable without needing to cut life short. We should not negate these wonderful human achievements, and rubbish scientific enquiry into further developments, by insisting that we need to control life too and that nothing else is good enough.

As this symposium shows, amazing things are being done today in the worlds of science and technology. And art is allowing us to dream, and to play with the possibilities of science, as well as to critique society’s reception of it. Together, art and science will change the world. It just might not be in the ways that we have so far imagined.

Screengrab of slide showing email signature - ju90. Webmaster/site slave and Multimedia Storyteller. Created by Nature, Modified by Life
Colour photograph of Ju presenting her work at the symposium.

© Ju Gosling aka ju90 2009
Photos of Ju at Superhuman © Julie Newman

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