One
reason why disability aids are commonly perceived as having negative connotations
is the depersonalising, identity-stripping effect of their stifling uniformity
and medicalised appearance - our aids reduce us to and categorise us by
our impairments in a reflection of the way in which the medical profession
treats us. I had already discovered the difference which a personalised
aid makes with public reactions to my much-admired stick, which was carved
by Rick Leech out of one piece of hazel, with the handle in the form of
a seal with buffalo horn eyes. My stick signifies something very different
to the standard metal, medical aid - its unique appearance restores its
associations with gender-bending, clowning and discipline, as well as,
in this case, having connotations of paganism and shamanism - but it performs
exactly the same task.
Similarly, when I was a child, and particularly when I was a teenager, I hated wearing glasses because of the very limited and medicalised choice of styles available, and because of the verbal and physical abuse that was associated with being marked as visually impaired. Today, market forces have ensured that glasses have become fashion accessories, due to the fact that, in the UK, glasses are now manufactured by private companies rather than the National Health Service. The development of contact lenses has also meant that visual impairments can be disguised. The disabling effects of my visual impairments, therefore, have now disappeared.
Unfortunately, most disability aids are still produced or prescribed by the National Health Service, and in many cases ownership still rests with the state rather than with the disabled person who uses them. Private purchases are very expensive and beyond the means of most disabled people, who have the lowest average incomes in the country - myths of generous state benefit systems and insurance policies notwithstanding. So most disabled people are unable to "own" their aids in any sense, with the result that their aids are the first thing which is noticed about them, and they are immediately classified as disabled by the specatator. Yet when an aid is personalised, the person using the aid is revealed beneath the social identity.
In 1996 I was therefore very fortunate to meet Jo Lang, a costume designer who trained at Falmouth and Bournemouth Colleges of Art. Jo creates costumes with attitude under her own label, Kiss My Ass, and luckily regarded transforming the brace as a challenge. She took my vague ideas and realised them far better than I could have imagined, whilst still allowing me ongoing input and control. It is to her credit that a stallholder at Kensington Market is one of several people who have since viewed the brace simply as clubwear - even when told differently - and who have openly desired it, thus completely reversing its stigma.
Our over-riding aim was to make the brace more comfortable to wear, in every sense. I had no wish to deny my impairment, to disavow my deviance. Making impairment visible illuminates a fundamental truth: the perfect body does not exist, and its illusion can only be maintained while the disabled body is hidden from sight. At the same time, I did not want to be medicalised by the appearance of the brace. Medical images are those of surveillance and social regulation, used to classify, discipline and manage the body. Meanwhile media images of disabled people distort us as objects of pity, as a burden to others, or as super-crips who have overcome what is seen as the tragedy of our lives, and these images are played up by charities which are run by and largely employ non-disabled people in order to get donations. I therefore wanted to control my own image, to mark my body in a way which was meaningful to me, and to reject my body's classification by its impairment.
There are two environments where I feel most comfortable: the beach; and cyberspace. I was conceived and grew up by the sea, and have always chosen to spend my holidays there. Since becoming disabled, I feel more comfortable walking on sand than on pavements, and the warmer the sunshine, the more my impairment diminishes. And I can achieve more physically in the water than on the land - even trapezing a racing dinghy and body boarding during my fittest periods. As a pagan, the beach is also important to me as the shifting border between land and the ocean. Paganism recognises the one true essentialism: that we are an inseparable part of nature. Paganism has been very helpful to me in coming to terms with impairment, since it reminds us that our efforts to control nature are illusory; instead, nature controls us.
However, I have always been charmed by technology and felt comfortable with it. The Mac environment, where I moved in 1994, is one where I feel particularly at home, especially since it allows me to customise the interface. While my impairment still impedes my work, cyberspace itself is not an inherently disabling environment (although it can disable). In addition, travelling in cyberspace literally allows me to detach myself from my body, since the concentration involved diminishes my awareness of pain. And hypermedia has provided me with a way of combining my skills and interests where none previously existed, so in a real sense I feel born to it as well as to the beach. We decided, then, to use both beach and techno imagery within the customisation.
In customising the brace, Jo and I also wanted to reflect and challenge attitudes towards disabled bodies. Both of us are opposed to the false worship of the unattainable perfect body, as reflected in the objectification of gay men's and straight women's bodies and in debates about creating "post-humans" and "leaving the meat". So we wanted the brace to present me as a proud object of desire, rather than as medicalised and asexual.
(Disabled people are commonly perceived as being asexual, and as sterile and/or lacking the right to breed - around the world, many disabled girls are forcibly sterilised or given injectable contraceptives such as Depo Provera; while pregnant women are urged to have abortions, and when they do not, their children are often taken away from them. When disabled people's sexuality is recognised, it is regarded as being deviant, and as objects of desire we are exoticised and fetishised. So in a very real sense, all disabled sexuality is queer.)
I had also been following the cyborg/body debate with interest over a number of years, and discussed it in detail in My Experiences as a Disabled Researcher, a hypertext which is included with my PhD hyperthesis. I felt that the cyborg, an artificial human who is partially inorganic, was a useful visual metaphor to use, both in terms of popular culture and in terms of the academic cyborg debate which is currently so popular in studies ranging from art to communication to the body. I also wanted to locate myself as a disabled woman within those discourses, because the disabled body is currently absent from them, whereas if it were included, many of these discourses would be problematised.
For example, the idea that, in the new millennium, we will all be augmented and upgraded by technology would be undermined by the realisation that scientists can't produce an artificial hip joint which will reliably last longer than ten years, and indeed, that the body is so resistant to being "upgraded" that people who have had transplants need to take drugs for the rest of their lives to prevent rejection. Likewise, the idea that we will all be able to take so-called "smart drugs" to enhance our abilities would be problematised by including the experiences of disabled people, given our awareness of the side-effects of drugs, and our knowledge that the drugs we rely on may also shorten our lives or even kill us.
Cyborgs, too, are seen on the one hand as being asexual, genderless, and on the other hand 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 being either asexual or deviant lovers, but also as genderless - to give an example, public toilets in the UK are divided into those for Men, Women and the Disabled.
The cyborg body, too, is a combination of technology and the organic, and 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", which gives the impression that they remain in their chairs even whilst asleep. For some reason, 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. 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. (Although it is also true that, for me, the use of my stick has become natural - when I am tired and watching the television, I often find myself wondering how a character is getting up and walking without the use of one . . . )
Cyborgs, too, are visualised as being less than human within popular culture, and therefore as not being deserving of human rights. Indeed, cyborgs are often seen as being a threat to humans, and therefore require containing. Disabled people, meanwhile, lack human and civil rights throughout the world. We are also seen as dangerous - in popular culture, physical impairment is used as a metaphor for evil, while IRL, women with mental health needs are stigmatised as potential killers and are forcibly drugged, restrained and imprisoned.
As a disabled woman, therefore - and as a queer, androgynous woman who has frequently been mistaken for a gay man and who does not conform to a number of female roles; who is white but of indeterminate ethnic background; from a mobile class background; with an impairment that ranges between leaving me bedridden to participating in watersports; with eyes that have been augmented by glasses and later by contact lenses since the age of seven; with a number of identities as a result; with a memory and brainpower which has been augmented by a Psion palmtop computer since 1992; and with my ability to communicate enhanced by a mobile phone since 1994 - I felt that I could justifiably claim and explore a cyborg identity.
I also like the cyberpunk ethic, having begun my career as the editor of a zine with an explicit punk philosophy. And as I am hooked on the usual techno-pagan mixture of popular culture, I greatly preferred the idea of looking like an extra from Star Trek to one from Casualty. Jo and I therefore decided to combine surf and cyberpunk imagery to transform the brace, changing borg to cyborg, geek_girl to net_surf_chick and "Miss" Gosling to ju90.
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| Dr Ju Gosling aka ju90's ABNORMAL: How Britain became body dysphoric and the key to a cure is available now for just £3.09 for the Kindle or in a limited-edition hardback with full-colour art plates for £20 inc UK postage and packing. |  |