On a personal level, abusive reactions can be very distressing, but since the same emotions would exist regardless of whether they are shown to me or not - and since all disabled people regularly experience abuse however they present themselves - I felt that it was important to get these attitudes out into the open, where they can be challenged, and where it might be possible to achieve change. Even if it is not, I felt that it was important to demonstrate and experience Pride, rather than hiding myself under a blanket of suitably baggy clothing. Non-disabled people will only come to feel comfortable with disability if we all sacrifice comfort considerations in the short term. And fortunately there have also been many people, both disabled and non-disabled, who recognised what I am trying to achieve and who have encouraged and supported me in this - whether they felt entirely comfortable with it themselves or not.
On the Net, reading the responses to this hypertext has also been rather an uncomfortable experience, particularly as I had not really considered who my audience might be when I created the work. My original impetus for creating it, in March 1997, was partly to explain to my students at Falmouth College of Arts, where I was teaching web production and design at the time, why I was walking around looking like an extra from Star Trek. I also wanted to be able to direct people asking "What's wrong with you, then?" to the site wherever possible. And in a world where other people's images of my body and perceptions of my life are on record, and I am mostly denied access to these files - let alone to challenge them - I wanted to produce my own images of myself, to tell my own story in my own space.
(As a disabled woman, I am constantly having to tell stories about my life - to doctors and nurses, physiotherapists, occupational therapists, alternative therapists, social workers, employment department officials, welfare officials, advice workers, ergonomic experts . . . with no detail considered to be too intimate to be asked about or revealed - my not-so-secret life. And these stories are generally told to people who are going to make judgements about them, and who can withhold the treatments, benefits and facilities on which I rely for independent living if they don't like them. They are, too, distorted stories of my life, which focus on the effects of my impairment and define me by these rather than by my life as a whole.)
Otherwise, as with much autobiographical art, I did not want to think about my audience too closely, for fear that I would self-censor my work. But in the event it has been interesting to see how differently this hypertext is perceived depending on who is reading it, particularly since website audiences are far less limited by geographical considerations, gender and interest groups than are those of traditional media. It has also been interesting to witness the power of the work, and the fact that the hypertext itself has been received as a performance rather than as a printed text - on the Net as IRL, the community provides my stage.
In general, non-disabled people perceive the disabled stereotype of "bravery" first and foremost when reading the work. This is an irritating stereotype for disabled people, partly because we are no braver than any other group - we just have little choice but to put up with our impairments and the way in which society treats us - and partly because it reflects an image of ourselves as "Other". However, since the admiration is genuine and specific in this case, it is also appreciated.
For disabled people, reading the hypertext seems to be an empowering experience - at least, I have only had positive responses from people who have identified themselves to me as disabled. And this for me makes any lack of comfort worthwhile, since I have only developed Pride as a result of other disabled activists' and artists' work.
Medical professionals seem to find the hypertext thought-provoking, which is excellent. We can't change the world which disabled people experience for the better without radical changes in medical attitudes and cultures, yet we have little opportunity for dialogue with the medical world IRL.
Fellow artists, meanwhile, perceive the hypertext as autobiographical/body art, which is gratifying, particularly as so much disabled art is dismissed as "therapy". (However, it still leaves me wondering whether they have taken on board the political content as it affects them).
Perhaps most interesting of all has been the response of orthopaedic fetishists. Many disabled people find the thought of such fetishism very disturbing, partly because they regard this as objectifying us as "freaks". Because although disabled people are most commonly viewed as being asexual, when we are seen as sexual, we are often seen as "exotic", Other, with our sexuality being disproportionately important to those who desire us (this, of course, is a common experience for Black people). And just as we are more generally stereotyped by our impairments, our sexuality is often assumed to be the same as those who share the same impairment, rather than being, as with everyone, unique.
Fetishists' apparent fixation with our depersonalising medical aids, therefore, can bring to the forefront our more general distress at non-disabled people's reactions to us as sexual beings. And in turn the fact that, on a daily basis, our non-disabled lovers have to come face to face with the challenges which the embodiment of disability bring to our thinking about the world, to share our social stigma, and to deal with the effects of our impairments - resulting in many leaving, while others remain only to control and abuse us. Perhaps, too, the association of fetishism with BDSM highlights our discomfort at the fact that, for many of us, pain and sex cannot be separated.
However, fetishists' responses to this work - and their invitations to me to visit their websites - have also underlined to me that wearing a spinal brace has no fixed meaning. For me, being fitted with the brace was a very frightening, emotionally distressing experience, and wearing it before it was customised was depersonalising, desexualising and damaging. Even with the customisation, the limitation which the brace imposes on my movements can feel confining and frustrating at times. But for brace fetishists, the same experience, and the same imagery, is intensely sexual and incredibly desirable.
This has underlined to me that, in the end, it's all simply about power and control. And performing disAbility in this way is as much power and control as I can get - and pass on.
"I became disabled nearly 10 years ago when I damaged my right arm in a stage performance trying to keep someone else from getting hurt. Thank you for your outspoken, out there honesty. I read in your comments everything I have experienced. . . The art that I viewed which is your website has had a deep affect upon me and my view of my disability. All this from a disabled opera singer."
"I found your web pages as a result of looking for stuff on the Chalet School - I am a keen reader of school girl books and have a fair collection in my mother's loft (much to her chagrin!) However I also found all your other pages particularly interesting as I teach in a FE College for disabled students."
"Perhaps I should tell you from the start that I'm not physically disabled, but rather one of those orthopedic fetishists that doesn't exist. Well we do, in fact."
"What can I say? Your page blew me away - it's great . . . It spoke to me . . . Your words are the first I've ever read that described so well, and so chillingly, what I went through. Not to compare my short foray into the world of medicine with yours. But I think you're very brave, and very beautiful. Shine on, ju90!"
"I found your quite wonderful web site this afternoon. What an incredible work it is - there is so much there I want to return to, so much that touched me."
"I was more than pleased to chance on your www page. To be quite honest, I have never felt so turned on, so immediately attracted. You are incredibly attractive without the brace, and the brace, to me, is a very powerful added attractor. It is both an extremely potent sexual attractor, and an equally potent aesthetic attractor."
"I just wanted to let you know that you are not alone in your experiences of doctors, diagnosis (or lack of one), medication, and disability in general."
"I read your biography and what can I say !? WHEW! What a story. I salute your courage. I hope the best for you."
"Do you have a full body photograph of your brace. I was curious because I have a homepage is just all plastic braces and I would like to add it to my page . . . I at one time had the same feeling that you have that it was ugly and embarrassing and just aestheticly unpleasing. Here is my story and photos of my brace."
"I just spent time at your web site. I wanted to let you know how much I enjoyed reading about your brace!!! I am a physical therapist and have always tried to 'dress up' braces and other things for my patients. . . I always say this . . . years ago, men dominated the health field. There was no creativity, and no imagination. Men know we are smarter, that's why they suppressed us for so long. Then came woman. We added color, imagination and creativity to the health field."
"What an outstanding page on yourself. What guts! Your most personal thoughts and feelings entered into a machine . . . but the world sees. I especially loved the transformation of the brace. From something everyone works hard to hide, to a sexual work of art!"
"Greeting from a fellow Cyborg, I am jealous you managed to get your one sprayed to look so cool. I am an architect and 27 years old . . . I have just downloaded your site to read through; it looks very interesting."
"Hello - Your page mentions spine deformity and speed humps. Who would be searching for that combination? Other people with spine deformity who cannot go over - or can't go over without pain - those miserable things. May we link to your page?"
"I cached as many of your pages as I could, for reading offline, and I've been back since to get more, and there are plenty more to go. I'm spending a lot of time with you at the moment. :-) . . . Anyway, I wanted to congratulate and thank you for your web pages."
"I have surfed your page. Concentrating mainly on your Not-So-Secret-Life . . . I don't know if this is true for you, but for many in this big world of billions of people, surrounded by things not built on any sort of human scale, it's nice to find that thing that makes one special or unique. You've done that. Not many other sexily ambiguous orthopedic fetish 'borgs on the planet. (Or are there?)"
"Last Thursday I discovered your web site after typing in 'disabled art'. . . Ju, I want you to know that this white-braided woman in US admires your creativity, computer-expertise, gumption, writing, photography, work for justice, inclusiveness, honesty, risk-taking, high-performance drive. You are a wise woman before the crone-years have kicked in. I like you lots. My women friends all over this country have already heard me tell of ju90, creator of the most intriguing web site on my quickly-expanding Favorites list. Thank you for offering the gift of yourself in this way . . . my appreciation for your model of how a web site can bring life and energy to this planet."
| 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. | |