I. Disability & Research


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:

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:

And, as Robert Murphy points out:

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:

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.

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:

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 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:

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:

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


Next: II. My Experiences Within the Medical System
Return to: My Experiences as a Disabled Researcher Index
Return to: Virtual Worlds of Girls Index

Dr Ju Gosling aka ju90's ABNORMAL: How Britain became body dysphoric and the key to a cure is available now for just 3.09 for the Kindle or in a limited-edition hardback with full-colour art plates for 20 inc UK postage and packing. Book cover