Naomi had been slowly getting to her feet and now Mary-Lou
found herself looking down on a girl who was badly stooped with a crooked
shoulder. But the face lifted to hers was lovely - almost as lovely as
Vi Lucy's with cloudy fair hair framing perfect features. Dark grey eyes
looked straight into hers as Naomi said, "How do you do?"
It was a musical voice, but there was a hardness about it which rang in
Mary-Lou's ears at once. The perfectly cut mouth was set in thin lines
and there was a crooked twist to the smile which accompanied the words.
"Hello, Naomi," she said, with her own delightful smile. . .
She felt an odd repulsion to the girl mixed with the genuine pity that
rose in her warm heart for anyone so terribly deformed.
(Elinor M. Brent-Dyer, Trials for the Chalet School, Chambers, 1959,
pp1-20)
Traditionally, the physical experiences of the researcher
have not been described within accounts of their research; nor have they
appeared in discussions within research methodology textbooks
.
Perhaps due to a wish to appear detached and "scientific", as
well as the pressures of disabilism, it has not been acknowledged that
a researcher's fatigue, illness or impairment may have affected the conduct
and findings of their research - either negatively or, indeed, positively.
Nor has it been recorded that researchers found parts or all of their research
physically or emotionally challenging. (Similarly, a researcher's personality,
emotional state and events in their working and personal lives are not
held to have any effects on or place in discussion about their work.)
res1
As a result, apart from a small body of work produced
by academics who are also activists within the disability movement, writing
and research on disability also remains largely conspicuous by its absence.
And aside from the aforementioned work, research has generally been carried
out by researchers who do not define themselves as disabled and who regard
disabled people as "Other".
This is despite the fact that, in the mid-1990s, there is a great deal
of research interest in cultural issues surrounding the body.
res2
Feminist researchers have, of course, challenged many
traditions. They have recognised that "scientific" standards
of research are neither possible nor relevant within many fields of research,
and the work of postmodernists has further taught us that research cannot
be separated from the beliefs and values of the society within which it
is produced.
Feminist researchers have also addressed physical issues, pointing out
that the traditional researcher is always held to be straight, white and
male, while women experience many things differently, including physicality.
Lesbian feminists have addressed issues of sexuality, challenging assumptions
of heterosexuality and taking into account the relationship between sexuality,
the researcher and the researched.
And Black feminists have addressed issues of race,
pointing out that constructions of womanhood have traditionally excluded
Black women's experience.
res3
As a result, feminist researchers have made topics such
as women's experiences of pregnancy, racism and sexuality valid within
the research arena, at least within Women's Studies.
However, as with traditional researchers, the assumption has been made
that the researcher is not disabled,
and disability as a construct or topic has been ignored by most feminists.
And feminist researchers are themselves regarded with suspicion and their
methodology disputed by many academics in different fields, as are postmodernists.
As a disabled, feminist researcher, then, I occupied the position of the
"Other"
within a number of different constructs.
res4
Of course, there must have been many researchers who struggled
with impairment during the course of their work in the past. But the majority
have remained invisible, knowing that their experiences have been regarded
as in-valid within the research arena, just as having an impairment makes
them regarded as in-valid within the academy and wider society. However,
a minority of disabled researchers have written about their own experiences
of disability, and have chosen to research into disability in preference
to other research topics. Notable amongst these are Jenny Morris
and Lois Keith,
whose work has been of great interest and inspiration to me, both before
I became disabled and since. Their work underlines the importance of recording
experiences of disability; of including disability as a construct along
with race, gender, age, culture and sexuality when carrying out research;
and of disabled people being visible within society.
res5
When I decided to write up my experiences as a disabled researcher, then, it was with this background in mind. As Morris points out:
Disabled people - men and women - have little opportunity
to portray our own experiences within the general culture, or within radical
political movements. Our experience is isolated, individualised; the definitions
which society places on us centre on judgements or individual capacities
and personalities. This lack of a voice, of the representation of our subjective
reality, means that it is difficult for non-disabled feminists to incorporate
our reality into their research and their theories, unless it is in terms
of the way the non-disabled world sees us.
In addition, the fact that I did not perceive myself as
disabled when I began my original postgraduate research in 1988, and became
much more severely disabled in 1992, meant that I learned about disability
alongside my thesis topic itself; in a very real sense, the experiences
recorded here were part of my PhD findings. It was also the case that it
is not possible for me to separate my experiences as a researcher
from my experiences as a disabled researcher, since the fact that
I am disabled affects almost every facet of my work. It is as relevant
to my work as my ethnic origins, gender, age, culture and sexuality (although
the validity of these are, of course, disputed by traditional researchers).
res6
Ironically, like many other disabled
people I have an impairment
which is regarded as "invisible". This is, of course, a misnomer;
as with other "invisible" disabled people, it is impossible to
spend any time with me without becoming aware of it. However, since I do
not use a wheelchair or depend on a guide or "hearing" dog, and
only seldom used a stick during my research, it would perhaps have been
possible for me to hide my impairment - to "pass" - both within
the academy and outside. The fact that I did not even attempt to do this
was for several reasons. The dishonesty which it would have involved would
inevitably have had negative effects on my research, given that I was in
pursuit of "truths" and was asking women to be open with me in
the course of that quest. It would also have hampered my research considerably
by not allowing my needs to be recognised and by leaving certain behaviour
unexplained.
res7
In addition, I am proud
of my identity as disabled, and wish to be visible. I am also proud for
my research to be situated within the field of Disability Studies as well
as within Communication and Image Studies and Women's Studies, and hope
that it will contribute to this growing and exciting academic discipline.
That I am able to take pride in being disabled results from the work of
the disability movement,
which I am pleased to acknowledge here. It comes too from the past struggles
of the Black and Lesbian and Gay rights' movements, which have developed
the concept of "pride" in difference and thus have made it much
easier to "come out". I am also grateful to Jane Paul, Equality
Officer at Bectu
for pointing out to me in 1992 that I am disabled, which was actually
very liberating, and to Keith Armstrong from the Direct Action Network
for educating me about the disability movement, and in particular about
theorising disability.
res8
Why should non-disabled researchers care about issues
surrounding disability, aside from political solidarity with their colleagues
and students? (Which is, of course, important in itself.) What relevance
does disability have to the broader academic project? The answer, of course,
is that it is necessary to understand disability in order to understand
the human condition, since physical and mental impairments - temporary,
permanent and progressive - affect the lives of us all. Excluding disabled
people from the data is also to distort the picture. To pretend otherwise,
because of the taboos surrounding disability, is to be intellectually dishonest,
as well as to deprive researchers of everything which disabled people and
an understanding of disability can offer. And it is only when we can face
our fears and be honest about the negative physical experiences involved
in carrying out research that we can also acknowledge the positive ones.
res9
Where do the fears which surround disability come from? First, there is the issue of "deviance" from the norm, with all that this implies in a society where conformity is seen as essential to survival and to peaceful coexistence. Then, with widespread beliefs that the human body is a facsimile of a perfect deity, the impaired or "defective" body is in turn perceived as being ungodly. From the other side, Darwinian theory has been interpreted by eugenicists and the medical profession as meaning that impairment could and should be prevented, concealing fears that to do otherwise could lead to a loss of "civilisation" itself. This has widespread effects on representation and perceptions of disabled people. Sander L. Gilman shows that:
The dichotomy is clear: The Healthy is beautiful, is the
erotic, is the good, for it leads to the preservation and continuation
of the collective. This is the norm against which the deviant is to be
measured. The deviant is ill and is therefore ugly and evil. (Being ill,
the degenerate is excluded because of the danger to the collective.) The
ugliness of the deviant may be overtly evident upon first glance, may appear
over time, or may be evident only to the "trained eye" of the
physician/aesthetician. That which is ill is therefore inherently anti-erotic,
even though it may mask itself as the "false" or pseudo-erotic.
And, as Robert Murphy points out:
Children are quite understandably curious about disabled
people and often stare at them, only to have their parents yank their arms
and say, "Don't look". Nothing could better teach a child to
be horrified by disability; that the condition is so terrible that one
cannot speak about it or even look at it. Children are in many such ways
taught to regard impairment with a loathing far beyond that of racial prejudice.
It is a sentiment that reinforces the fear that this could happen to them.
res10
Why do these fears flourish, leading to disabilism being generally acceptable? Essentially, because there is so little knowledge of what living with an impairment entails. As this work shows, not only is it possible for a disabled person to carry out research successfully, but being disabled is not a fate worse than death, something to be avoided at all costs. Morris points out that:
Assumptions that our lives are not worth living are only
possible when our subjective realities find no place in mainstream culture.
Where disability is represented in the general culture it is primarily
from the point of view of the non-disabled, and so their fears and hostility,
and their own cultural agendas, dominate the way we are presented.
As a result of the exclusion of disabled people from the
mainstream, social disability is far more difficult to cope with than physical
or mental impairments. However, the solution to that lies in the power
of us all. It is important that those who do not regard themselves as being
impaired should not prevent disabled people from carrying out research
because of assumptions about physical and intellectual abilities, and should
recognise the right of disabled people to equal access to the academy.
For those who identify themselves as "Other",
there is an also an imperative to recognise common experiences and solutions.
As Colin Barnes points out: "the politics of disablement is about
far more than disabled people; it is about challenging oppression in all
its forms."
res11
This work records how that oppression manifested itself
during my research. The attitudes which caused that oppression are reflected
in the fact that, throughout my research, I was frequently asked "What's
wrong with you?" when I introduced myself as being disabled.
To this my answer was often that "I don't have a grant", which
was indeed the major obstacle to my research. But the question reflected
the fact that the majority of people are regarded as being "normal"
or "right", while those who are different are regarded as being
"abnormal" and "wrong". It also reflected the fact
that many people believe they have a right to ask disabled people intrusive
and personal questions, even if they are strangers. This is inextricably
linked to the medicalisation of disability, which Catherine Kohler Riessman
explains as follows.
The term medicalization refers to two interrelated processes.
First, certain behaviours or conditions are given medical meaning - that
is, defined in terms of health and illness. Second, medical practice becomes
a vehicle for eliminating or controlling problematic experiences that are
defined as deviant, for the purpose of securing adherence to social norms.
Medicalization can occur on various levels: conceptually, when a medical
vocabulary is used to define a problem; institutionally, when physicians
legitimate a programme or a problem; or on the level of doctor-patient
interaction, when actual diagnosis of a problem occurs (Conrad and Schneider,
1980b). . . .
Medicalization is a particularly critical concept because it emphasizes
the fact that medicine is a social enterprise, not merely a scientific
one. A biological basis is neither necessary nor sufficient for an experience
to be defined in terms of illness. Rather, illness is constructed through
human action - that is, illness is not inherent in any behaviour or condition,
but conferred by others. Thus, medical diagnosis becomes an interpretive
process through which illnesses are constructed . . .
res12
Medicalisation has been interpreted
by the disability movement in terms of the "medical model of disability".
After medicalising disability, society then attempts to situate the experience
of being disabled within an individual's impairment, linking the difficulties
faced by that individual directly to their "defectiveness". Shared
experiences are therefore assumed only to be common to people with the
same impairments. For example, people with visual impairments are assumed
to have common experiences, but these are believed to be quite different
to the experiences of those with hearing impairments. At the same time,
all people with the same impairment - for example cerebral palsy - are
expected to experience that impairment to the same degree and in the same
way, and thus to have the same needs.
res13
The "social model of disability",
which is advocated by the disability rights movement, instead situates
the experience of being disabled within the society in which people live.
Rather than being disabled by their impairments, people are disabled by
the norms and attitudes of wider society: whether it is a tendency to design
buildings which are inaccessible to wheelchairs; or to discriminate against
disabled people because of prejudice about their abilities. Under the social
model of disability, the majority of the negative experiences related to
impairment arise from society's norms and attitudes; people are disabled
by society rather than by their impairments. Disabled people therefore
have many common experiences, whatever the nature of their impairment,
and can unite in a common identity. At the same time, all disabled people
are individuals with individual needs and experiences.
res14
Three other models of disability
also exist. The first is the "charity model", with charities
dedicated to a particular medical impairment and providing information
and advice only to those regarded as having that impairment. Almost all
of these charities are controlled and staffed by non-disabled people, and
most use very negative and stereotyped images of disabled people to raise
money. They portray disabled people as "sufferers" and "victims",
for whom assistance is optional, and so perpetuate a system of voluntary
rather than statutory provision for disabled people. The
second model is the "administrative model", which is described
by Frances Blackwell as "based on both the medical model and the charity
model and relates to us defining our impairments in order to get benefits
and receive an education".
The third is one of invisibility or exclusion,
where disabled people's experiences and issues are ignored despite being
relevant and important.
res15
Marsha Saxton and Florence Howe, in the introductory section of Part 1 of With Wings (Virago, London, 1988), point out that:
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. But the discriminatory attitudes and thoughtless behaviours, these are what make life difficult, these are the sources of oppression. The architectural barriers; the pitying stares and frightened avoidance; the unaware assumptions that a disabled woman can't do the job, can't order for herself in a restaurant, can't find a mate or direct her own life, are all symptoms of the problem. The oppression is what's disabling about disability. (p3)
However, it is also
true that an individual's impairment(s) do have a direct effect on their
experience of being disabled, including the intensity of that experience,
and it can be very helpful to unite with others with the same impairment.
Indeed, for people with certain illnesses and conditions, including HIV/Aids,
organising around those experiences has been crucial to obtaining better
provision. It is equally true that the medical model of disability is still
prevalent outside areas controlled or affected by the disability rights
movement, making it a major factor within the social model of disability.
And since every individual's needs are different, it is necessary to discuss
the nature of their impairment in order to establish and meet those needs.
res16
Liz Crow points out that:
The experience of impairment is not always irrelevant,
neutral or positive. How can it be when it is the very reason used to justify
the oppression we are battling against? How can it be when pain, fatigue,
depression and chronic illness are constant facts of life for many of us?
We align ourselves with other civil rights movements and we have learnt
much from those campaigns. But we have one fundamental difference from
other movements, which we cannot afford to ignore. There is nothing inherently
unpleasant or difficult about other groups' embodiment: sexuality, sex
and skin colour are neutral facts. . .
our insistence that disadvantage and exclusion are the result of discrimination
and prejudice, and our criticisms of the medical model of disability, have
made us wary of acknowledging our experiences of impairment . . . our silence
about impairment has made many . . . things taboo and created a whole new
series of constraints on our self-expression. . .
What we need is to find a way to integrate impairment into our whole experience
and sense of well-being, and, subsequently, for our individual and collective
capacity to work against disability.
The fact that, until recently, impairment has been excluded
from debates among disabled people may be a major contributory factor to
the exclusion of disability from contemporary theorising around the body.
There are, of course, other reasons - principally the aforementioned fears
and taboos. But disabled people ourselves must take some responsibility
for the fact that, to date, there has been no meeting of minds. As Morris
points out: "A feminist perspective can help to redress this [previous
silence], and in so doing give voice to the experience of both disabled
men and disabled women."
Crow recommends:
a renewed social model of disability. This model would
operate on two levels: a more complete understanding of disability and
impairment as social concepts; and a recognition of an individual's experiences
of their body over time and in variable circumstances. This social model
of disability is thus a means to encapsulating the total experience of
both disability and impairment.
As Kohler Riessman points out: "To 'demedicalize'
is not to deny the biological components of experience, but rather to alter
the ownership, production and use [sic] of scientific
knowledge.'"
res17
All researchers need to be aware
of the above models and issues when enquiring about individual experiences
of impairment, as well as when including disability as a relevant construct
within research. Researchers also need to be aware that disabled people's
experiences of revealing information about impairment - often to a stranger
who reflects the cultural hostility to disabled people, for example within
the benefits or social services systems (the administrative model of disability)
- can be painful and embarrassing. Researchers should therefore be very
clear as to the purpose and necessity of their questions, and be careful
with both the phrasing and timing of them.
res18
Researchers should also be sensitive
about the language and means of communication which they use, both during
their research and when writing it up. First, their language needs to be
accessible. Avoiding academic language when asking questions outside the
academy is essential in any circumstances, but for people with learning
difficulties, the phrasing of a question - or the use of non-verbal means
of communication - can make all the difference to their ability to reply.
Then, offering written material in braille and large type sizes is a key
means of avoiding the exclusion of visually impaired people from the data.
And using a signer may be the only way of obtaining "oral" information
from deaf people, given that so few researchers are capable of signing
for themselves.
res19
Second, researchers need to be aware that commonly used
language is often offensive. "What is your impairment and how does
it affect you?" is more accurate than "what's wrong with you?",
although researchers should still remember that they have no "right"
to expect a reply. Then there is an ongoing debate within the disability
rights movement about whether we should be described as "people with
a disability" - which many now feel reflects the medical model of
disability - or as "disabled people" - which better reflects
the social model of disability. Many American activists, meanwhile, prefer
"differently abled",
reflecting the fact that many disabled people can participate and achieve
in society alongside non-disabled people if they use wheelchairs, sticks,
dogs, hearing aids and so on - or simply go about things in a different
way. "Crippled" is being reclaimed by activists - or crips -
but should not be used by people who are not disabled, while opinions differ
about "the disabled".
(In the UK in the 1980s, the National Union of Journalists launched the
Campaign for Real People in the belief that people were dehumanised by
descriptions such as "the disabled", "the homeless",
"the poor" etc.)
res20
Offensive terms, in the UK at least, include handicapped, invalid (in-valid), being a "victim" of one's condition (which implies passivity and helplessness), and being "confined to a wheelchair" (using a wheelchair is a liberating experience if you have mobility problems, and people who use them do not spend their entire life in one). Researchers should be equally sensitive about the use of descriptions and metaphors. There is an ongoing debate about this within the disability rights movement. For example, Cheris Kramarae and Paula A. Treichler point out that:
One question is whether we make an effort to expunge phrases
from our language like "stand up for what you believe" or "blind
as a bat" that exclude or reflect negatively on those who are physically
different from "the norm"; or whether we attempt to "reclaim
naming" - and revisit these words, changing our usage to yield such
affirmative possibilities as "sensitive as a blind woman".
Finally, there is the issue of what language researchers
should use to describe people who do not consider themselves to be disabled.
In the US, one term which has developed is Temporarily Able-Bodied (TAB),
indicating that many people will become disabled, either temporarily or
permanently, as their lives go on. "Able-bodied" on its own implies
that disabled people are incap-able rather than differently-abled, while
"People who are not disabled" is simple and to the point.
res21
Despite the above advice, though, this work is not an
attempt to educate the reader about disability, nor to reiterate everything
which I myself have learned (although the Bibliography
provides a good starting point). And I do not claim that all of my experiences
would have been shared by every disabled researcher in the circumstances.
In particular, the attitudes which I faced were also coloured by my gender
and sexuality, and to a lesser extent by my ethnic and class background.
Equally, my approach was coloured by my age, my political background and
the example of the disability rights movement, which meant I always took
the position that I was entitled to the same rights and respect as a straight,
white, non-disabled man. But in reading on, remember that the experiences
recorded here are just as political as they are personal, and are just
as significant to a researcher who does not define themselves as disabled
as to someone who does.
res22
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