Dickie was silent for a minute or two. "I'd better
explain," she said slowly, at last. "Cherry's been ill, poor
kid - I.P." Then, as the girls stared, "Infantile paralysis.
It's left her very lame . . . it's made a change in her. . . she's been
shy and - queer. . . If you see her, don't try to make friends, for I know
she jolly well won't! Oh, I know it's idiotic and all that, but the doctor
says it's part of the illness. It does change people a bit sometimes. He
thinks that as the lameness gets better she'll come all right again."
(Elinor M. Brent-Dyer, The Chalet School and the Island, Chambers, 1950, p26)
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"
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'
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).
. . . for the person in pain, so incontestably and unnegotiably
present is it that "having pain" may come to be thought of as
the most vibrant example of what it is to "have certainty", while
for the other person it is so elusive that "hearing about pain"
may exist as the primary model of what it is "to have doubt".
Thus pain comes unsharably into our midst as at once that which cannot
be denied and that which cannot be confirmed.
Whatever pain achieves, it achieves in part through its unsharability, and it ensures this unsharability through its resistance to language . . . Physical pain does not simply resist language but actively destroys it, bringing about an immediate reversion to a state anterior to language, to the sounds and cries a human being makes before language is learned.
. . . its resistance to language is not simply one of its incidental or accidental attributes but is essential to what it is.
. . . Contemporary philosophers have habituated us to the recognition that our interior states of consciousness are regularly accompanied by objects in the external world, that we do not simply "have feelings" but have feelings for somebody or something . . . physical pain - unlike any other state of consciousness - has no referential content. It is not of or for anything. It is precisely because it takes no object that it, more than any other phenomenon, resists objectification in language. (pp4-5)
Most relevant to my experiences within the medical system is Scarry's comment that:
Medical contexts, like all other contexts of human experience, provide instances of the alarming phenomenon noted earlier: to have great pain is to have certainty; to hear that another person has pain is to have doubt. (The doubt of other persons, here as elsewhere, amplifies the suffering of those already in pain.) (p7)
Scarry notes that physical pain is rarely represented in literature, commenting that:
. . . this is most striking when seen within the framing fact of how consistently art confers visibility on other forms of distress . . . Psychological suffering, though often difficult for any one person to express, does have referential content, is susceptible to verbal objectification, and is so habitually defined in literature that, as Thomas Mann's Settembrini reminds us, there is virtually no piece of literature that does not stand by ready to assist us. (p11)
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.
The only state that is as anomalous as pain is the imagination.
While pain is a state remarkable for being wholly without objects, the
imagination is remarkable for being the only state that is wholly its objects.
There is in imagining no activity, no "state", no experienceable
condition or felt-occurrence separate from the objects: the only evidence
that one is "imagining" is that imaginary objects appear in the
. . . Physical pain, then, is an intentional state without an intentional object; imagining is an intentional object without an experienceable intentional state. Thus, it may be that in some peculiar way it is appropriate to think of pain as the imagination's intentional state, and to identify the imagination as pain's intentional object.
. . . pain and imagining are the "framing events" within whose boundaries all other perceptual, somatic, and emotional events occur; thus, between the two extremes can be mapped the whole terrain of the human psyche.
. . . That pain and the imagination are each other's missing intentional counterpart, and that they together provide a framing identity of man-as-creator within which all other intimate perceptual, psychological, emotional, and somatic events occur, is perhaps most succinctly suggested by the fact that there is one piece of language used - in many different languages - at once as a near synonym for pain, and as a near synonym for created object; and that is the word "work". (pp162-169)
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
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.
The Virtual Bodies project was an exploration of my experience of chronic pain and its confluence with materiality, the immaterial, and dematerialized notions of corporeal transcendence. This immersive, interactive virtual environment is comprised of digital data obtained from technologies which are able to extend our perception to apprehend previously inaccessible properties of our bodies, from x-rays, MRIs and sonograms to electron microscopy, invasive microvideography, and algorithmic interpretations which transform data from bodily sounds, heat and "measurable" pain sensitivities into malleable visual and auratic forms. This virtual body is of enormous scale, and exists in a state of constant decay and reformation. Further, the virtual body becomes "book", as it is overwritten with texts of desire, Bataille-inspired re-embodiments of Eros and Thanatos swirling about splintered and reconfigured forms and notions of a body in pain. (programme notes)
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:
. . . the dominant medico-psychological conceptualization
about pain has tended to focus on sensation, with the subsequent
inference that it is able to be rationally and objectively measured, and
thus leading to limited interpretations of the complex phenomenon of pain.
There are, of course, other discourses, and in characterizing the biomedical
model in this manner, we fully recognize a critique has already been developed
within medicine . . .
Pain, as well as being a medical "problem", is an everyday experience and while the medical voice is a valid one, other voices, especially those of the subject are often lost in "the neglected encounter between pain and meaning" (Morris, 1991:2) . . . a more sophisticated model of pain would locate the individual within their social and cultural contexts, and would address the ambiguities, allowing for the inclusion of feelings and emotions. (pp84-85)
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:
. . . people in pain, of whatever type, need the legitimacy
of their pain and suffering accepted by others, both medically and socially.
This search for legitimation is part and parcel of a parallel search for
meaning and explanation, involving a process of narrative reconstruction
in the face of the biographically disruptive nature of pain and suffering.
Here pain takes on certain symbolic qualities and along with an understanding
of emotions and embodiment, the inclusion of narratives of pain gives an
emphasis to possibly the most neglected voice of all within the medical
encounter, the subjective voice of the patient or sufferer (Kleinmann,
. . . Feelings, emotions and embodiment must be regarded as crucial to experiences of pain. (pp99-100)
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
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
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:
The development of technology provides the potential to
replace body functions and parts, to repair and upgrade the performance
of the body. It can do this in two ways. Firstly, by directly altering
the infrastructure of the body, genetic engineering being just the latest
in a series of increasingly radical techniques which will produce "post-humans".
Secondly, by constructing artificial devices and altering the immediate
near-to-body environment to augment and replace human capacities through
systems designed to increase our empowerment . . . There has therefore
been a good deal of recent interest in the social implications of machine-body
fusions, or cyborgs . . .
A number of feminists have begun to confront the relationship between women and technology and explore the potential gains for women of not just reproductive technologies, but the reproductive and emancipatory implications of new forms of technology (Haraway, 1985, 1993; Martin, 1992; Plant, 1993; Wajcman, 1991). Important here has been the interest in the new information technology and the potential of virtual reality and cyberspace.
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
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
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:
can only be accessed through Modern Records Centre, behind Library: go to the porter's entrance (under bridge connecting Library & Modern Records Centre), knock [sic], & proceed to the lift & up to the 1st floor, to the Library Rooms 1 & 2, & to F1.07 in the Engineering Building, out the main Library entrance & across the bridge.
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.
As a teenager she was considered hysterical, hypochondriac and rather lacking in moral fibre. She certainly suffered extraordinary symptoms, walking with crutches until the age of 17, and often unable to move . . . Perhaps Ada even cherished the solitude and peculiarity of her diseases; she certainly found them of philosophical interest, once writing: "Do you know it is to me quite delightful to have a frame so susceptible that it is an experimental laboratory always about me, & inseparable from me. I walk about, not in a Snail-Shell, but in a Molecular Laboratory" [Moore, 1977:218]
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
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:
Technology is beginning to mediate our social relationships, our self-identities and our wider sense of social life to an extent we are only just beginning to grasp. The portable telephone, the portable fax, the notepad computer and various other forms of electronic human augmentation have become "essential" for social life in the "densely networked centres of the global cities" (Lash and Urry, 1994:319) and, increasingly, beyond.
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
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
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
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:
Some people may feel sick, tired, sleepy or dizzy. They may vomit or sweat, become flushed or get a headache . . . Some people's blood pressure drops suddenly, making them feel faint or dizzy or giving them blurred vision when they get up . . . Some people may develop a rash, a dry mouth, high blood pressure or their hear beat may change. They may feel uneasy, restless or confused. They may have hallucinations . . .
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.
In computer culture, embodiment is often represented as
an unfortunate barrier to interaction with the pleasures of computing .
. . In cyberwriting, the body is often referred to as the "meat",
the dead flesh that surrounds the active mind which constitutes the "authentic"
self . . . The dream of cyberculture is to leave the "meat" behind
and to become distilled in a clean, pure, uncontaminated relationship with
. . . The idealized virtual body does not eat, drink, urinate or defecate; it does not get tired; it does not become ill; it does not die (although it does appear to engage in sexual activity, as all the hype around "teledildonics" and virtual reality suggests). This vision may be considered to be the apotheosis of the post-Enlightenment separation of the body from the mind, in which the body has traditionally been represented as earthly, irrational, weak and passive, while the mind is portrayed as spiritual, rational, abstract and active, seeking constantly to stave off the demands of embodiment.
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:
In contemporary society a woman is usually represented
only as her body . . . Kristeva argues that, if women came to power
the representation of power as opposition to the body would cease
. . .
Jane Gallop suggests that the conflict is always "between body - as the inadequate name of some uncommanded diversity of drives and contradiction - and power, between body and law, between body and phallus, even between body and Body" (Gallop 1982, p. 121).
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:
Écriture féminine . . . describes
how women's writing is a specific discourse closer to the body, to emotion
and to the unnameable . . . Writing and literature are crucial areas because
literature reveals the repressed, the secret and unsaid and, in a "potency"
of the imagination, can be a space of fantasy and pleasure . . .
Écriture féminine is one of the best developed areas in French theory
. . . Most French feminists are actively creating a new women's language while simultaneously critiquing the old one. Cixous claims that women write "through" their bodies and Kristeva adds that this language can seem to come from a foreign land - from an "asymbolic, spastic" body.
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
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.
After declaring with delight that when she reads her body is in the room but she herself is not, she said, "I think this is the case with other women." She continued, "I think men cannot do that unless they themselves are readers. I don't think men are ever a part of anything even if it's television." "They are never really out of their body either," she added. I don't care if it's a football game; I think they are always consciously aware of where they are . . . but I think a woman in a book isn't."
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:
If you've believed all of this, you probably think me less polymorphously perverse than extraordinarily self-deluded, bitter, or in some strange sense of denial. Which, in fact, I'm not . . . my stance toward - and on - my prosthetic leg is quite a bit different from the one I've entertained here as a playful, yet ironic, response to the delights of the techno-body celebrated by Baudrillard and his followers. What many surgeries and my prosthetic experience have really taught me is that, if we are to survive into the next century, we must counter the millennial discourses that would decontextualise our flesh into insensate sign or digitize it into cyberspace where, as one devotee put it, "it's like having had your everything amputated" [Barlow, 1990:42].
After a critique of "high-tech millenarianism", Sobchack concludes:
I wish Baudrillard a little pain - maybe a lot - to bring him to his senses. Pain would remind him that he doesn't just have a body, but that he is his body, and that it is in this material fact that "affect" and anything we might call a "moral stance" is grounded. Both significant affection and a moral stance (whether on prosthetic legs or not) are based on the lived sense and feeling of the human body not merely as a material object one possesses and analyzes among others, but as a material subject that experiences its own objectivity, that has the capacity to bleed and suffer and hurt for others because it can sense its own possibilities for suffering and pain. If we don't keep this subjective kind of bodily sense in mind as we negotiate our techno-culture, we may very well objectify ourselves to death. It is only by embracing life in all its vulnerability and imperfection, by valuing the limitations as well as possibilities of our flesh, and by accepting mortality, that we will get out of this - or any - century alive.
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
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:
. . . we should urgently set about dis-illusioning ourselves. There is no alternative and more perfect future world of cyberspace and virtual reality. We are living in a real world, and we must recognize that it is indeed the case that we cannot make of it whatever we wish. The institutions developing and promoting the new technologies exist solidly in this world. We should make sense of them in terms of social and political realities, and it is in this context that we must assess their significance. Because it is a materially straitened and socially divided world, we should remember how much we remain in need of politics.
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:
From one perspective, a cyborg world is about the final imposition of a grid of control on the planet, about the final abstraction embodied in a Star Wars apocalypse waged in the name of defence, about the final appropriation of women's bodies in a masculinist orgy of war (Sofia, 1984). From another perspective, a cyborg world might be about lived social and bodily realities in which people are not afraid of permanently partial identities and contradictory standpoints. The political struggle is to see from both perspectives at once because each reveals both dominations and possibilities unimaginable from the other vantage point. (p154)
Sarah Kember has described Haraway's figuration of the cyborg as:
an attempt to revise science from within. It is a feminist
call to technological arms. It is a non-unitary entity which embodies a
shift in Western scientific epistemology. It owes allegiance to the feminist
successor science projects. It is a strategy, and not an 'it'. It is genderless
and does not attain to subjectivity.
For me, the essence of Haraway's cyborg is a geometry which describes a non-dualistic, non-hierarchical relationship, and which constitutes a model of intersubjectivity. In this sense it is still on the drawing board, not yet fully enlisted in the battle of the cyborgs for either global domination or earthly survival. Haraway's cyborg world is a utopia, an elsewhere which is here in as far as it is shared and exists (in essence) in the theories and practices of others.
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:
The myth of TB constitutes the next-to-last episode in
the long career of the ancient idea of melancholy - which was the artist's
disease, according to the theory of the four humors. The melancholy character
- or the tubercular - was a superior one: sensitive, creative, a being
apart. Keats and Shelley may have suffered atrociously from the disease.
But Shelley consoled Keats that "this consumption is a disease particularly
fond of people who write such good verses as you have done . . . "
So well established was the cliché which connected TB and creativity
that at the end of the century one critic suggested that it was the progressive
disappearance of TB which accounted for the current decline of literature
and the arts.
But the myth of TB provided more than an account of creativity. It supplied an important model of bohemian life, lived with or without the vocation of the artist. The TB sufferer was a dropout, a wanderer in endless search of the healthy place . . . The Romantics invented invalidism as a pretext for leisure, and for dismissing bourgeois obligations in order to live only for one's art.
. . . Robert Louis Stevenson chose a Pacific exile . . . "By a curious irony," Stevenson wrote, "the places to which we are sent when health deserts us are often singularly beautiful . . . [and] I daresay the sick man is not very inconsolable when he receives sentence of banishment and is inclined to regard his ill-health as not the least fortunate accident of his life."
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.
|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.|