IV. My Experiences Within My Academic Field

In terms of contact with other academics, email replaced the membership of the University community to which I was denied access with membership of the worldwide electronic academic community. Email allowed me to continue contact with individuals at other institutions, both in the UK and the US, whom I met with at conferences and other events outside the University - and to learn about conferences and other events in the first place. Then, in place of seminars (which in any case the University ceased to provide for research students in my department after two terms), I was able to join email discussion groups or "lists" in Psychology, Women's Studies, Philosophy and Computing, which broadened my knowledge of and perspective on these fields. .

Within the lists, disabled people were more prominent than elsewhere within the academy. I came into contact with other members who identified themselves as disabled; descriptions of other disabled students' experiences; and information for disabled users of the Internet. This greater prominence reflected the fact that, potentially, communicating via email can be an accessible and liberating experience for disabled people. This is because it depends entirely on the use of written language and takes place outside of real time. Since it does not involve face-to-face communication, it does not depend on physical access to often hostile environments; feeling ill at a particular point in time does not isolate you from the debate; and prejudice due to one's appearance or inability to speak clearly and quickly is absent.

But these benefits also mean that, unlike in real life, disabled people are invisible unless they state their identity explicitly each time they appear in cyberspace. In particular, they are invisible when the list is involved with another identity - for example lesbian or bisexual - which is itself taken for granted. Because of this invisibility and widespread disabilism, disability issues are often ignored even on the rare occasions when they are raised. For example, in three years of various list memberships, the only discussion of disability itself came in a debate on "Spiderwoman" on the relevance of programming for text-only browsers. Attempts by three disabled members, including myself, to debate disability issues on the "lesac.net" list for lesbian academics, in February 1997, met with silence despite the fact that this followed a heated debate about ignoring racial identity and the impact of the dual identities of "lesbian" and "Black".

In cyberspace it is possible to conceal gender, sexuality, race and impairment, and the human-machine "cyborg" of postmodern discourse is taken to be lacking all of these. The experience of disabilism, including social rejection, which is common to disabled people may mean that disabled netsurfers prefer to remain anonymous. But this is to encourage the illusion that computer users are always straight, white and male, which is not in the interests of "Other" groups. Disabled netsurfers may want to wait for support, though, before finding a textual or graphic means of signalling their real life identities

In any case, disabled people are often excluded from cyberspace because of the difficulty of obtaining access to computers, due on the one hand to our lower incomes - particularly since we often need more expensive equipment to meet our needs - and on the other to the inaccessibility of many university computer centres and public libraries. I was able to obtain a substantial, low-cost loan to purchase the necessary equipment, and therefore found the Internet more accessible than the University, but this was dependent on the will of my bank manager and thus on my social and professional status. As Dale Spender points out: "Whether it is oral, manuscript, print or electronic media, the issues are access and equity if we want the full story", and she adds later that we need a social policy for cyberspace.

It should also be pointed out that the need to communicate via written language is in itself a formidable barrier, given the high levels of functional illiteracy in the UK and worldwide. Disabled people are frequently denied access to education, so this is a particular problem for us, especially for those with learning difficulties. Equally, language is an area of the Internet where disabled people are discriminated against in a similar manner to which they are in real life. Computing jargon reflects disabilist attitudes in the same way in which it reflects sexism. For example: the term "disabled" is commonly used to mean that a program or feature of a program has been switched off and is totally incapable of functioning; and computer users are taught how "to disable". Within discussion groups, both hardware and software are frequently criticised as "lame", and graphic displays are described as "spazzing out" when they develop faults.

Away from the Internet, I found a growing research interest in issues surrounding the body, and this was informed by both Women's Studies and Communication & Image/Cultural/Media Studies. However, I found that disability was largely conspicuous by its absence from published work on the body, as well as from published academic work as a whole. In fact, what written work on disability did exist I found mostly within newsletters, magazines or journals owned by organisations run by or for disabled people. As most of these organisations reflect the charity model of disability, much of this writing is seen only by people affected by a particular impairment (either personally, or as a "carer"); much of the rest circulates only among members of the disability rights movement.

However, I did find two collections of writing which crossed both of these boundaries, Musn't Grumble and With Wings. Both were written by women and published by feminist publishing houses, reflecting the growing awareness of disability within feminism. In the first collection, I found Molly Holden's poem "Pain teaches nothing" particularly poignant, challenging as it does the cultural assumption that suffering leads somehow to a higher state of mind.


In fact, the subject of pain when unrelated to disability (and it is important to stress here that many disabled people do not suffer pain or illness as a result of their impairment) was discussed within cultural research on issues surrounding the body. For example, Elaine Scarry's The Body in Pain: The Making and Unmaking of the World is a study which resulted from her interest in torture, war and legal contexts of pain. It provides some useful insights into pain and its relationship with language and philosophy (although it is noticeable that there are no references to Scarry's personal experiences of pain or feelings about pain).

Most relevant to my experiences within the medical system is Scarry's comment that:


Scarry notes that physical pain is rarely represented in literature, commenting that:

Perhaps the fact that psychological pain, unlike physical pain, has referential content also helps to explain the way in which the medical system attempted to redefine my pain as having a psychological cause. Scarry goes on to discuss the link between pain and the imagination, which I found relevant both as a writer myself and as a researcher into fictional writing.


Pain was also a theme of the conference "Virtual Futures 95: Cyberevolution", held from 26-28 May 1995 at the University of Warwick. For example, Arthur and Marilyn Kroker, in the plenary session "Hacking the Future", referred to the popularity of "slash and burn" in certain American sub-cultures. Here, people cut - "slash" - their own flesh, then cauterise it by setting it alight; the resulting scars, like body piercings, are considered to be aesthetic and symbolic, while the experience itself marks a personal journey. Another example involved discussions about virtual reality, positing that someone wearing a bodysuit equipped with sensors could be made to feel pain and other sensations as part of that "reality". Yet another example came within a paper presented by Trudy Barber from the London Institute of Psychiatry on "Sexual Control and Neural Micropolitics", referring to the inflicting and receiving of pain in sado-masochistic sexual practices. (BDSM sex is "dominant" in cyberspace because it requires a narrative.)

All of these examples reflect the desire to face but also to control pain: to decide when, by whom and to what extent it is inflicted; and to carry scars or piercings as visible signs of having overcome pain (there being an unstated belief that wounds always heal and that scarring is only aesthetic). What this denies, of course, is the reality of pain: its uncontrollable nature; its internal as well as external source (i.e. pain which originates below the skin rather than through it); and the fact that there is often a much greater intensity of sensation than most of the pain being described by the participants. Whatever the nature of my pain, sadly it is neither "fun" nor "sexy". Rather, chronic pain impedes sexual activity and response rather than enhancing it, although the doubling of the pain threshold at orgasm increases the intensity of pleasure for sufferers as it does for those who have chosen to experience pain during sex. (I have great hopes of a new painkiller currently being developed through research into the female orgasm.)

The denial of the true nature of pain was also expressed at the conference in the reception of an outstanding presentation, "The Instrumentality of Pain in Virtual Bodies", by Diana Gromala, Director of the New Media Research Lab at the University of Washington. As someone who had suffered chronic pain for many years, she had appropriated video footage of the inside of her body (taken during one of numerous medical tests) and created an art installation which she described to the conference.

This was a particularly good example of someone appropriating and reconstructing their own narrative of pain. However, questions from the floor were directed instead to the second part of her presentation, about the use of computer graphics and virtual environments to "reconstruct" the events which led up to the arrest of O.J. Simpson, and to how she was able to obtain research funding for her work from the US Defence Department. There was not a single question about Virtual Bodies or her pain; they were excluded from the debate. As with the attempt to start a debate about disability on lesac.net, her words were invisible.

A useful survey of other academic "work" on pain comes in Gillian Bendelow's and Simon Williams' "Pain and the Mind-Body Dualism: A Sociological Approach" (it is interesting to note that much of this "work" has been published first or solely in the US). Again, no reference is made to disability, but they argue that:


From my own experiences I also recognised the truth in the assertion that "pain reorganizes our lived space and time, our relations with others and with ourselves . . . the full phenomenological import of pain can only be grasped when located within this wider frame of reference" (p87). Bendelow and Williams go on to discuss the fact that:


My Experiences as a Disabled Researcher represents both a "narrative reconstruction" and a "search for legitimation". This process first began when I sought help from a hospital a few days after my pain started, at which point I told a doctor the story of what I was doing when the pain began, of my medical background up to the onset of the pain, and of what had happened since then. This reconstruction has been ongoing: each time I visit a medical or complementary practitioner or social services or benefit adviser I repeat it and/or add to it with the story of what has happened to me since my last visit; I also revise it in the light of experience and greater understanding. I have no choice but to create and recreate this narrative reconstruction, it is required of me in order to be recognised as disabled and to receive treatment, and illustrates again the administrative model of disability.

However, the narrative as it is subsequently recorded is not mine. Instead, others decide on the relevance and "truth" of each part of my narrative before recording their own. Sometimes the structure of their narrative reconstruction even determines my own. For example, both my first visit to a social worker and my first visit to a Cornish physiotherapist consisted of them constructing a narrative from replies to standard questions on a printed form.

Since 1994 I have also been telling my narrative reconstruction to members of the legal profession: first to my union's solicitor; then to a solicitor whom the union recommended; then to another solicitor within the same practice (to whom my case was passed without reference to me); then to the Legal Aid Board, to which I had to add the narrative of my previous solicitor's incompetence; and most recently to a new solicitor. To some extent I have had more control over this legal narrative, since I initially produced a written account of my experiences within the medical system for the solicitor. Upon receiving additional information from the solicitor, for example regarding the contents of my medical notes, I have added to my narrative reconstruction in writing, in person and by telephone.

However, this narrative was also rewritten. Certain parts of my written account, for example, were considered irrelevant by the solicitors, and at my first meeting with my second, incompetent solicitor, it was obvious that he had not considered it worth reading at all. Equally, when my narrative was contradicted by the medical system's in the form of its "records", the first assumption which my incompetent solicitor made was that my narrative was false. Even when I pointed out that I had both witnesses and medical evidence to support the veracity of my narrative, and that as a journalist I had proven to be a credible witness - so the assumption must therefore be that the medical system's narrative was false - my narrative was not believed. As a disabled woman, my narrative reconstruction carried less weight than that of a male professional, despite its content; as a disabled woman, I was invisible as a professional. As a result, the narrative which was subsequently constructed by my second solicitor and supplied by him to his "medical expert" was so flawed and factually inaccurate as to state that I was the victim of a train accident.

Then, despite my writing to the "expert" to correct my solicitor's version of events, my own narrative reconstruction was ignored when the "expert" subsequently produced his report; only my solicitor's narrative was considered valuable, and the facts remained invisible. The "expert"'s own narrative was equally flawed, beginning with his definition of my impairment, which was out of date and false. He then based his conclusions on a false belief: that the sclerosant injections which I had been given by my consultant contained phenol, which would have destroyed nerve tissue and so blocked pain. The fact that sclerosants are intended by their manfacturers to tighten joints was therefore considered irrelevant; as well as the fact that, in my case, this latter effect would have increased my impairment. But as the consultant's letter to my osteopath showed, the injections actually contained no phenol nor any similar substance and were given with the express purpose of tightening joints; the solicitor and/or "expert" had overlooked this.

The lack of weight which my own narrative has been given compared to those of non-disabled male professionals can best be illustrated by what followed next. I wrote and pointed out that the entire premise of the "expert"'s narrative was false: according to the consultant's own letter, the injections had explicitly been administered to tighten my joints. The consultant had also stated explicitly that the injections had contained no phenol or similar substance, so he could not have intended them to relieve pain by destroying nerve tissue. The real issue - covered in my narrative to the "expert" but not in my solicitor's, so ignored in the "expert's" report - was whether the injections were contraindicated in my case, and whether the effects had been harmful. However, my narrative was ignored, invisible.

My solicitor then recommended that the case be closed, since a medical negligence action could not be won if a doctor has acted in accordance with medical practice. If sclerosant injections were commonly used to relieve pain by destroying nerve tissue because of their phenol content, their administration had been quite proper in this case, even if I had not consented to them. Both the solicitor and doctor agreed that I had not consented to the sclerosant injections - I had believed that I was having the anti-inflammatory injections for which I had been referred - but it was considered to be such a minor matter for a disabled woman to be given treatment to which she had not consented that the potential damages could not be expected to cover legal costs.

Even when the case was reviewed by another partner within the practice they found no fault with the doctor's report - the facts and my comments were invisible - and the solicitors therefore recommended to the Legal Aid Board that funding for the case be terminated. I then wrote to the Legal Aid Board with full details of why I believed that I needed a second medical and legal opinion, but once more my narrative was accorded less value and the Board confirmed the decision. Subsequently I lost an appeal against the decision to a committee which also gave my narrative less value, even though my case was by this time supported by another solicitor (a woman). By this time I had also lost the support of my union, who were unwilling to believe that the solicitor whom they had recommended could be at fault. They also chose to believe the solicitor's narrative rather than my own, despite the facts and my record as a union activist, and accused me using the case as a "crutch".

Even within the academy, with its privileging of accuracy, a narrative was created about my experiences of impairment and problems within the University which was false and not my own. While I was able to add to this narrative, it was controlled by the academy and its existence concealed (for example, it was not passed on to the Secretary of the Welfare Committee).

In this hypertext, however, I have appropriated the narratives of my experiences within the medical system (quite literally by using the legal process to gain access to my medical records), legal system and the academy to construct my own narrative, which integrates events during my adolescence with the events of the past five years. Here, as the author, I have the [author]ity, and I accept that one of the reasons for constructing it has been the need for "the legitimacy of [my] pain and suffering [to be] accepted by others, both medically and socially". It should be noted here that disabled people rarely have control over official narratives about themselves; instead their stories are rewritten by parents, as case studies or as the subjects of articles, documentaries and charity fundraising materials.

My "search for legitimation" was also fulfiled when I found my new solicitor: the fact that she believed and agreed with me was very empowering. After reading my original account carefully, she also felt that there was a need to investigate the standard of care which I had received at every point since I became disabled in May 1990. As, a result, my legal action for medical negligence resumed in January 1996, funded once more by the Legal Aid Board. It is hard to believe that my new solicitor's response was unconnected to her gender, and to the fact that she has a different perspective on women's experiences of and relationship to the medical and legal professions. However, ultimately it made no differenceand the case was abandoned in August 1999.

Moving on, another topic which I found relevant both to my experiences as a disabled researcher and to my particular field of research is that of the relationship between the body and technology. Mike Featherstone and Bryan S. Turner define this as one of the six areas where research on the body is concentrated. They state that current research is concerned with the fact that:


This is one area where the invisibility of Disability Studies has profoundly affected the discourse, since the bodies which are being referred to here are not taken to be disabled bodies. Discussion of repairing and prolonging life, so relevant to people who have had heart or transplant surgery, instead becomes equated with prolonging life beyond a century for "normal" people. Discussion of using technology to upgrade body performance, so relevant to people with implants or who use wheelchairs and a wide variety of other aids, instead becomes equated with creating "superhumans" or cyborgs. Discussion of manipulation of genes, so relevant to people with genetic illnesses, instead becomes equated with talk of "designer babies". And as disabled people's experiences would show, this utopian discourse is false - and often falsified. However, fuelled by cyberpunk fiction it appears to be widespread within certain academic circles, and has dominated the debate around the extension of the body's performance by technology.

Disabled people have been among the first to embrace new technologies and the benefits which these offer, but they also have greater awareness of the problematic nature of that technology. For example, I am only partially sighted without having my vision corrected, and I find that contact lenses give me a superior quality and range of sight than spectacles. But I am aware that I risk corneal damage and therefore damaging the sight which I do possess if I wear them on every occasion where I could benefit from them. I am also aware that there are long-term risks to my sight in wearing contact lenses, however careful I am. When laser surgery was introduced to "correct" short sight I therefore considered it, but I am aware that it is unlikely to be totally successful because my natural sight is so "bad", while surgery carries significant risks of damaging the sight which I do have. Similarly I have considered spinal surgery to relieve my pain, but I am aware that many people's problems are worsened by it and in fact have never been offered it for this reason. If the probable surgical outcomes described above change as a result of improvements in medical technology, I may think again, but there is no evidence to suggest that this will happen in the near future.

Disabled people, like feminists, are also aware of the debates around "normalisation", and the pressures to conform to an ideal which has been shaped by capitalism. As Sonia Osman points out: "Disabilities are an issue for us all, not just because many will (for instance) lose our hearing and our mobility if we live long enough, but because notions of having to have 'perfect' bodies disable us all." Disabled people have often been urged to conform to an aesthetic by using artificial limbs which actually hinder their mobility and abilities. I myself, after wearing a spinal brace for only a few weeks, noticed that my body shape was changing and my "deformity" was becoming more exaggerated; years of attempting to force my body to conform to the norm may well have contributed to my impairment. Equally, many women have undergone surgery to change the shape of their breasts and noses and to remove or add body fat and skin, simply to conform to a cultural ideal of "beauty": often they have been scarred or disabled in the process; and some have died. A key reason for these "failures" has been the body's rejection of artificial implants: be they mechanical or organic (as in the case of transplants), the body is characterised by a deep resistance to being "enhanced".

Returning to "Virtual Futures 95", the programme note for the plenary session "Medical Bodies: Monsters, Surrogates & Cyborgs" (28/5/1995) states that "the synthetic human as it is now . . . is a weakling, crippled both by the initial selection of Cyborg candidates (from the elderly population and the diseased) [and by the immune system]". This reflects the popular view of disabled or ill people as "in-valid" and undeserving of medical attention. Instead, the note suggests, research and treatment should be directed to "normal", "valid" people; then progress could be made in upgrading the body. In fact, it is more true to say that medical research has reached its current point of progress because ill and disabled people have allowed themselves to be experimented on - or have been experimented on without their consent - with widely varying results. It is one thing for the French artist Orlan, present at the conference, to explore cyborg and body issues through voluntary and relatively safe plastic surgery, but quite another to have been one of the many victims of war on whom the techniques were developed.

Of course, there is no doubt that medical technology has genuinely improved many disabled people's lives - for example by the use of external gadgets such as spectacles, contact lenses, dialysis machines, and internal gadgets such as pacemakers, artificial hips and spinal rods. However, the best that these have achieved so far is an inferior approximation to the physical qualities already possessed by the majority of the world's population. And the humble wheelchair - a design so simple that any culture with the wheel can build one, yet despised by people who do not consider themselves disabled - is equally or more liberating than any internal gadget for people who have difficulty in walking. (It is interesting to note here how often disabled people are described as being "confined" to or "in" a wheelchair, as if they are unable to leave it to sleep, bath, sit on the settee etc - which many people actually believe - wheelchair users are already envisaged as cyborgs.)

Perhaps unsurprisingly, disability - as opposed to pain - was both excluded from the agenda and from the debates within the conference. Disabled people had also been excluded from any consideration in terms of access (reflecting the social model of disability and showing how typical my experiences were at the University of Kent); our needs were invisible. For example, on arriving at the University of Warwick I discovered that I had to climb up an extremely high staircase to reach the registration desk. The conference had not been sign-posted on campus and so I had already had to walk some distance from where my taxi had dropped me; the stairs exhausted me. However, when I asked one of the conference organisers about the lack of information about lift access, I was told that it had nothing to do with them; I should have contacted a member of the University's administrative staff, who would then have told me that the lift was outside and round the back of the main building. I then asked where the toilet was, and was told that it was at the bottom of the stairs. After further questioning I was grudgingly told that there was a toilet on the same floor, but was given no help in finding it or with opening the heavy fire doors which separated me from it.

On returning to the registration desk, I was told to go back downstairs until the conference began, as there were no waiting facilities on that floor and the conference would be late in starting (due to the inability of the organisers to operate the video equipment). I did, of course, challenge the attitudes of the organisers, but was met with hostility and incomprehension. Rather than climbing the stairs again, though, I did take up a seat in the conference hall without being challenged, but this meant that I had no opportunity to meet and to network with the other participants. Instead, I consulted the programme for information for disabled delegates, and found a note about the aforementioned lift and the advice that the library:

Leaving aside the assumption implicit in this that all disabled people use wheelchairs, this would seem to me to be a very difficult route for a wheelchair user who was new to the campus to follow without assistance being provided. Later I found that many of the seminar rooms where conference sessions were taking place were spread out over the large campus, without any information being provided about how far you would have to walk to reach them or how many stairs were involved.

Perhaps the visible presence of disabled people - and probably unsurprisingly, there were no disabled people visible at the conference - would have been an uncomfortable reminder that we do not control the body, rather, the body controls us; we are our bodies. Disabled people have had to accept that medical science is not all-powerful; instead we have had to accept and grieve for our lack of ability to control our bodies, and also to take responsibility for them. Marsha Saxton and Florence Howe, in the introductory section of Part 1 of With Wings, point out that "unfortunately, in our cultural denial of the reality of chronic illness and disability, we frequently silence the voices of those who cannot deny it".

A useful survey of research into the relationship between the body and technology can be found within the articles in Body & Society's special issue on "Cyberspace Cyberbodies Cyberpunk - Cultures of Technological Embodiment". I found it empowering to read self-styled "cyberfeminist" Sadie Plant's account of the Victorian software pioneer Ada Lovelace, the daughter of Lord Byron and Claire Claremont who became an assistant to Charles Babbage and whose name is given to the computer language ADA.

Ada, I claim you as a disabled sister. Plant goes on to note that Ada accepted "the fashionable belief that over-exertion of the intellect had led to her bodily disorders", at one point laying part of the blame for her condition on "too much Mathematics". As today, psychological rather than physical explanations were preferred for women's illnesses and disabilities; and as today, women were oppressed enough to believe them. Ada died, however, of cancer, in 1852; her memory is enshrined today in computer terminology.

One relevant area for Disability Studies which is being neglected in studies of the body at the time of writing is the impact which personal forms of information technology have already made in enhancing and extending the body's performance. Mike Featherstone and Roger Burrows note that:

Of course, technology has mediated our social relationships and self-identities throughout the twentieth century, via the telephone system, radio and television. However, portable information technology, which is carried on the body but allows the body a freedom to roam denied it by more traditional technologies, is still relatively new and its effects relatively unexplored.

To give a personal example, I carry a mobile phone with me, which certainly performs a role in mediating my social (and professional) relationships - I am more easy to contact, whether I want to be or not, and I find it easier to contact others. I also carry a palmtop computer, and both it and the phone extend my memory through their ability to store other people's contact details, as well as combining to allow me access to the Internet. The extension of my memory, and my access to the Internet, do serve to mediate my social and professional relationships, but I am also able to create and to store notes and to retrieve and to store information. In addition, other mental abilities besides my memory are extended: for example, I am able to perform complex mathematical calculations (a pocket calculator, of course, plays the same role). And while there are specific implications because of the portable nature of this technology, there is still a great deal left to explore in terms of the role which the non-portable personal computer plays in extending the body's performance.

It is worth examining the term "post-human" in a little more detail at this point. For me, post-humans or cyborgs cannot be characterised by their transplants or implants. Humans have always been characterised by their ability to manipulate nature - for example, by farming, animal breeding, cooking - the extension or repair of human abilities by transplants, implants and test-tube genetic manipulation is simply part of that continuum. But what exactly is a "human"? If humans are differentiated from animals by their use of tools, did we actually become post-human more than two centuries ago, with the invention of and dependence on machines? Or if humans are differentiated from animals by language and imagination, did we actually become post-human millenia ago with the invention of writing? In which case, did cyborgs come into existence earlier this century, in terms of people who spend their daily lives interacting with technology? (John Pickering of University of Warwick's psychology department subscribed to this view at "Virtual Futures 96", claiming that cyborgs represent an exo- rather than endo-technology.) Perhaps "human" is another term which needs reevaluating in the context of postmodernist theory, in which case we might remember that, using the above definition, humans, post-humans and cyborgs coexist in our unequal modern world, with many still denied access to machinery and to writing, and still more to technology.

A related debate to that on the relationship between the body and technology is that of the body which is physically and mentally enhanced by drugs. Drugs under debate include "smart drugs" such as Piracetam and Vasopressin, consumed in order to increase mental awareness and ability. John Morgenthaler writes that: "Dosing for intelligence fits in nicely with the other crazes of the moment: cosmetic surgery and body-building." Then come psychoactive drugs such as Ecstasy and LSD, which, it is claimed, have "greatly influenced high-tech's evolution", and which some claim allow them to "experience this same boundless, hypertext universe without the use of a computer at all. For them, cyberspace can be accessed through drugs". Last come drugs associated with body-building, particularly steroids.

Disabled people are uniquely qualified to comment here. For example, without taking the non-steroidal anti-inflammatory Naproxen and the strong pain-killer Zydol I am unable to function either physically or mentally to my maximum potential. I also take large quantities of vitamins such as A and B12, minerals such as chromium and other supplements such as lecithin, evening primrose oil and royal jelly with the intention of ""enhancing" my body. In one sense, of course, my use of drugs supports the view that drug-taking can enhance the body, although, as with the positive benefits of surgery and implants, the body under discussion is physically impaired.

However, my drug use also involves risk. For example, the Independent (2 May 1994) reported that between 3,500 and 4,000 hospital admissions for bleeding ulcers annually result from the side-effects of non-steroidal anti-inflammatory drugs such as Naproxen, while studies of the over-60s showed that between five and ten per cent of patients admitted died as a result. Similarly, with the analgesic Zydol:

The perspective which disabled people's drug use engenders, including an awareness that all drug-taking - legal and illegal alike - involves risk, is not being reflected in the debate at present. Likewise, for disabled people drug use is usually a negative choice.

Debates around the enhancement of the body by technology and drugs are in fact part of a continuum which begins with the body and ends with the discourse of escaping the body altogether. Deborah Lupton points out that: "A central utopian discourse around computer technology is the potential offered by computers to escape the body", and this has been another central theme within cyberpunk fiction.


This discourse is reflected in the belief - again stemming from cyberpunk fiction - that in the future we will be given neural implants to allow us to interface directly with computers. Perhaps the desire for this to take place results from a hidden acceptance of the impossibility of the "virtual" becoming real, causing all contact with virtual reality instead to be mediated through technology. If we cannot really escape the "meat" into a virtual existence, we could at least have the illusion of doing so, with the virtual reality becoming as or more "real" than what is taking place outside the body. Even if neural interfacing proves possible, though, and a simple and relatively risk-free operation could be devised (which personally I doubt very much), what happens when the implant malfunctions? What are the implications of rapidly changing technology? Would every member of the population require a new implant each year or two? Or would the ageism of the twentieth century be exacerbated by discrimination based on the fact that, the older one became, the more obsolete one's internal technology. And what about cost? How would resources be distributed? All of these questions require political as well as technological answers.

The discourse of escaping from the body, of leaving it behind, also produces immediate problems for feminists, for whom the body is a fundamental part of identity. For example, Cheris Kramarae and Paula A. Treichler begin their definition of the body thus: "Our most basic 'land' - which has been regarded as an exploitable resource for sex and children and has been mystified in the process." Maggie Humm points out that: "In modern Western culture 'nature' is conflated in our understanding of the female. Women stand for, and symbolise, the body and all that is not reason." She adds that:

The desire to escape from the body, including from physical sexual contact, can therefore be viewed as a desire to escape from women, or from what it means to be a woman. Humm also points out that, in French feminist theory:

In this discourse, if women are separated from their bodies by entering the written world of cyberspace, they are then separated from their writing by doing so. Cyberfeminism therefore urgently needs to address the misogynism implicit in cyberculture's "dream" of "leaving the meat".

Leaving aside my feminism, perhaps, as a disabled person suffering from chronic pain, I would still be expected to find this discourse of escapism attractive. In fact I do not, since I have no desire to escape from my body, in which I take great pride and enjoy living through. As Marsha Saxton and Florence Howe point out: "Most disabled people feel that the disability itself, the pain, the need for compensatory devices and assistance can produce considerable inconvenience, but that very often these become minimal or are forgotten once the individual makes the transition to everyday life". What cyberculture has fundamentally failed to understand is that the body is alive; we only become "meat" upon death. Only the body feels desire: true cybersex is literally unattainable.

But for non-disabled people, the fear of impairment which characterises disabilism means that technology seems to offer the only hope of attaining the impossible dream of the perfect body. Making impairment visible would illuminate a fundamental truth: the perfect body does not exist; and its illusion can only be maintained while the disabled body is hidden from sight. Making the disabled body visible would also underline the fact that every body is unique - even twins differ, and I would venture to guess that clones will too - conformity is unattainable.

For those with physical impairments, though, the total valuation of the mind over the body is an interesting shift. Currently, discrimination is based on a value system which equates physical impairment - or any difference from the "norm" of the straight white male - with being of less value and ultimately valueless. But cyborgs and virtual bodies are without race, sex, sexuality, impairment or difference: in cyberspace there need be no "Other" (without pride this can seem an attractive discourse). With the disappearance of the body, there is also the disappearance of gender, race and sexuality, and in a life which is largely virtual, the physically impaired body can be upgraded - through transplants, implants and aids - and overcome by the cyberbody. However, as with the fictional machines R2D2 and C3PO, the cyberbody remains imperfect and incapable of functioning as well as the human body in a natural environment. It is this imperfect reality which problematises the utopian discourse of the cyberbody; it is the body's imperfections which betray the falsehood of a belief system that privileges mind over body and which prevent their ultimate Cartesian splitting.

That fear of disablement, death and of being betrayed by the body, and the desire for sexual contact and communication without physical contact, are such prominent themes in current research probably relates to contemporary experiences of HIV/Aids. The same generation which made computers an integral part of their lives has been exposed to the realities of disabling illnesses and bereavement at an earlier age than previous post-war generations (I myself have lost a member of my extended family and his partner to Aids, as well as a number of friends). These experiences have, of course, been combined with experiences of prejudice and oppression against people with HIV/Aids, already familiar to disabled people. However, for people experiencing disablement and HIV/Aids directly, there has been the growth of pride, the discovery that our lives can still have quality and meaning, and the acceptance of mortality (after an initial period of anger and grief). In this debate, as in so many other areas, it is a great shame that Disability Studies and the disability rights movement have been excluded.

It is interesting to consider the extent to which the fictional narratives of cyberpunk , with their "alternative and more perfect future world of cyberspace", together with a desire to escape from both physical and political realities into "virtual reality", inform the current debate around the body and technology. For example, at "Virtual Futures 95" there seemed to be widespread beliefs that humans are already evolving into super-human "cyborgs" and that virtual reality can transform body experiences, with references supporting this being made to cyberpunk fiction rather than to actual technological developments. For example, the programme note for the plenary session "Machinic Fictions: Deleting the Future" stated that: "If the gap between social reality and science fiction has closed, then cyberpunk is writing reality." It went on to complain that: "Cyberpunk's subterranean influence is felt everywhere . . . yet the established literary institutions . . . staunchly ignore if not blatantly repress [it]."

I should stress here that I regard cyberpunk as the most exciting genre within contemporary fiction, and, as this project shows, am extremely enthusiastic about information technology; I am simply sceptical and critical of the somewhat simplistic approach which characterises much of the current academic debate and which excludes disability. But if the women reading girls' school stories use the fictional worlds to escape for an hour or two and to alter their own realities in the process - complaining all the while that the literary establishment does not take them seriously - how much more so was this true of the cyberpunk readers attending the conference? Significantly, cyberpunk is a genre which is largely created by and read by men; it is worth noting here that Janice Radway found that women readers of romance genre fiction describe reading itself as an act of escape from the body. In particular, she quotes one fan.


If men are unable to participate in the experience of being "out of their body" through reading, is this one motivation for their attempting to create the virtual realities represented in their reading? And compared to the women reading girls' school stories, who seek to alter their reality by recreating friendships networks analogous to those represented in the books, is this ambition realistic? The experience of HIV/Aids, where scientists have been unable to find a cure or vaccine and are struggling to create successful long-term treatments, underlines the limitations of medical science in contrast to the utopian world of cyberpunk. It was also noticeable that at "Virtual Futures 95" the conference organisers had enormous difficulty in getting their sound, video and computer equipment to work, resulting in several sessions being delayed or cancelled; this was hardly an example of the transforming powers of the digital revolution. And while many of the delegates talked eagerly of cyberspace, few seemed to own computers or had access to the Internet; their experience of the "Cyberevolution" was quite literally fictional. (Most of the delegates and the organisers were very young, which was clearly a factor in this.)

The greatest challenge to date (1996) to utopian discourses about the cyberbody has come from Vivan Sobchack, in "Beating the Meat/Surviving the Text, or How to Get Out of this Century Alive". (From a personal point of view, this also underlined to me the relevance of being disabled to my research and wider academic field.) Sobchack describes how she had recently had her left leg amputated above the knee (although at no point does she identify as disabled), and goes on to discuss this in terms of becoming a "techno-body" and experiencing "prosthetic pleasure". She fills a page with descriptions of the pleasure relating to having her prosthesis fitted, of the improvements to her body shape and image as a result of physiotherapy, and of the fact that she could continue to "make myself over" with plastic surgery, claiming that her pain disappeared very quickly, before she reveals that:

After a critique of "high-tech millenarianism", Sobchack concludes:


I would add that, while I agree with Sobchack's critique of the current debate surrounding the body and technology, as well as making the criticisms above, I still welcome the fact that academics are debating issues around the body, and I am particularly pleased that the debate is taking place in what is partly at least my own field. While disability and disabled people are still conspicuous by their absence from the conferences, journals, books and debates, the body at least is there. I hope that my narrative is able to contribute to greater awareness of disability within the field, and that the field will soon be enriched, informed and enlivened by further contributions from Disability Studies and the disability rights movement.

Kevin Robins, in "Cyberspace and the World We Live In", touches on the need for a political dimension to the debate - although he does not refer to disability politics - and to bring the body back into reality when he points out that:


Donna J. Haraway, the original cyber-feminist, in her seminal "A Cyborg Manifesto: Science, Technology and Socialist-Feminism in the Late Twentieth Century", offers a way forward when she uses the cyborg as an image or metaphor which can enable us to make sense of the world around us. She makes "an argument for the cyborg as a fiction mapping our social and bodily reality and as an imaginative resource suggesting some very fruitful couplings", and goes on to claim that "we are all chimeras, theorized and fabricated hybrids of machine and organism; in short we are cyborgs" (p150). Haraway suggests that:

Sarah Kember has described Haraway's figuration of the cyborg as:


Utopian it may be, but as a queer woman who is frequently mistaken for a man and does not conform to a number of female roles, who is white but of mixed and indeterminate ethnic origin, with a body which is unmistakably human and yet is "malformed", an impairment which ranges between leaving me bedridden and participating in watersports, and a number of identities - woman, queer, disabled, pagan, feminist, socialist, postmodernist - none of which are defining, Haraway's non-unitary, non-dualistic cyborg, with its feet planted firmly in the real world, is the one which resonates for me. I believe in the unique body, the less-than-perfect body, the gendered, racially and socially constructed body. For that reason, following the end of my PhD research and after belatedly being prescribed treatment for my pain, I decided to explore a cyborg identity further.

Finally, in my survey of my academic field, I was pleased to be reminded that illness and disability have not always been shunned and despised by intellectuals. Susan Sontag points out that in the nineteenth century:

I smiled when I first read this, writing up my hyperthesis in a beautiful and remote area of the UK after being "forced" to leave the city because of my declining fitness. Particularly since, in 1992, my impairment indeed gave me the pretext, not exactly for leisure, but for withdrawing from political work and anti-poverty campaigning to pursue full-time study alongside other creative projects. But for women today, as in the nineteenth century, the result is to be isolated at home, cut off from the world rather than going out and embracing it.

Sontag also points out that in nineteenth century England "It was glamourous to look sickly . . . Indeed, the romanticizing of TB is the first widespread example of that distinctly modern activity, promoting the self as image" (p29). How tempting it is to wish that, rather than the widespread denial of illness and disability which exists today and "the dream of cyberculture [being] to leave the 'meat' behind", disability and illness were instead romanticised in this way. But this, too, would be as much as distortion as the images of disability already available to us. It would also be to ignore the reality of life for people living with TB in the 1990s, given that a record three million people worldwide died in 1995 and 30 million deaths are predicted over the next decade. Utopian beliefs that science had overcome TB for ever have, sadly, turned out to be false.

It should however be noted that TB is a central theme in Elinor M. Brent-Dyer's Chalet School series, although the majority of her readers now share the belief that the problem of TB has "faded away". This underlines once more the relationship between the subject of my work and my research experiences, and illustrates the way in which a hypermedia thesis allows me to demonstrate that relationship in a way which would otherwise be impossible.

Next: V. My Experiences During the Fan Research
Return to: My Experiences as a Disabled Researcher Index
Return to: Virtual Worlds of Girls Index

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. Book cover