Last week a commenter on this blog asked the following question:
“Could you also explain, though, why does your research HAVE to be done by a disabled person…?”
There was a slight misinterpretation here of what I’d said earlier. I am keen that this piece of research into the church and disability should be done by a disabled person. It doesn’t have to be. But I do hope it will be. (Of course, I also hope that researcher will be me, for obvious reasons. But that’s a separate issue!)
The question of why is something of a difficult issue. There’s no denying that when this question comes up, it often gets personal. Why, says the highly competent non-disabled person, does it matter who researches disability? As long the research is conducted and voices are heard, what’s the problem? And threatened researchers close those big inaccessible doors to the academy again.
The academy is not listening to the full story of emancipatory research. This research approach does not mean that all researchers must be disabled. Neither does it mean that disabled people with no research training want to throw all the professional researchers out of all the sociology departments in the land and take over (and I can’t imagine why they would – I’m sure they have far better things to do with their time).
What it does mean is engagement, and awareness of standpoint and privilege. The emancipatory research paradigm owes much to feminist empiricist and standpoint research, and their challenging of malestream epistemology, in this sense. As Harding says about the way research into gender has traditionally been undertaken:
“The problem here is not only that the hypotheses which would most deeply challenge androcentric beliefs are missing from those alternatives sexists consider when testing their favored hypotheses. It is also that traditional empiricism does not direct researchers to locate themselves in the same plane as their subject matters. Consequently, when nonfeminist researchers gather evidence for or against hypotheses, ‘scientific method’ – bereft of such a directive – is impotent to locate and eradicate the androcentrism that shapes such a process” (Harding, 1986:167, my emphasis).
Similarly, Skeggs makes the point that standpoint theory asserts that “the experience of oppression engenders particular knowledges” (Skeggs, 1997:26, emphasis in original), and that the role of researchers using this approach is to engage in and communicate experience, while being constantly aware of the subjectivity of both researcher and participants.
In the same way, there is a deeply normative, disablist epistemology at the centre of a large proportion of social research into disability, as many researchers from the field of disability studies have argued (Oliver, 1992; Rioux and Bach, 1994; Zarb, 1997; Barnes, 2001). The problem is that this normative epistemology continues to go unheeded, and the normative ideology that emerges from it is continually reproduced. To rephrase Harding, the disablist structures and ideologies that shape the research process, and therefore the results of research, are ignored.
What’s different about the emancipatory research paradigm, then? Several things. Like feminist standpoint theory and research, it centres the experience of research participants (also owing a debt to participatory action research here). It acknowledges that the ‘objective expert’ position taken by the researcher is a major problem, and conversely asserts that there is no objective position in research. Following this, it is clear about its epistemological basis: the social model of disability. And most importantly, it attempts to give back the control of the research agenda to disabled people (Priestley and Stone, 1996).
The last of these, in particular, I’m keen to explore. Some erroneous assumptions have been made while trying to achieve the full control of disabled people over research agendas. These assumptions (and this is purely my interpretation) have included: all disabled people are organized, all disabled people are politicized, all disabled people are aware of the disabling structures that exist within society, and all disabled people can be easily reached through your local user-led organization, so you can just turn up at their door and disabled people will instantly be in control in of your research agenda. Um. Not quite. Especially when the disabled community, that could once have been called a movement, is currently extremely fragemented.
I’m interested in finding creative and accessible ways to put disabled people in control of research that affects them, in a way that reaches the disabled ‘community’ as it is today. I don’t think that’s going to be easy. I don’t think it automatically happens just because I’m disabled. And it may not even be possible – as the great Mike Oliver eventually concluded (1997). But I believe it is absolutely essential to attempt it.
Why? Because we haven’t even begun to eradicate disability discrimination from society. And not only that, but disabled people – and the disabling structures we face every day – remain invisible in society. I’m currently taking a sociology course on inequality and diversity that acknowledges every group covered by equality legislation except disabled people. Many people, speaking from positions of privilege, will tell you that “everyone’s a bit disabled” (see Abberley, 1991, and many other theorists for the major flaws in this argument), and isn’t every school/office/church/mosque/shop accessible already (*ahem*), and they get free cars, don’t they (nope), and we’re very disability-aware you know (but we’re not employing that applicant with mental health problems in case she’s off on paid sick leave all the time)… Research could, and does, have an impact on some of this problem of disablism, discrimination and invisibility – if it truly communicates the experiences of disabled people.
In common with standpoint feminism, emancipatory disability research begins with an understanding that, until very recently, theories about and approaches to disability were developed entirely without the input of disabled people. For centuries disabled people were the objects of research, rather than its subjects (to borrow from Skeggs). Women, people from minority ethnic groups, non-heterosexual people, and other oppressed groups have been similarly objectified in the pursuit of sociological knowledge. The difference is that today, research about, for example, black people, controlled entirely by white researchers without the input of the people being studied would meet with strong condemnation. Yet this is still not the case for disabled people. We remain objectified, in research and in society.
Which is why I believe that, at the moment at least, a lot more of this research should be done by disabled researchers than is currently the case. I don’t mean all of it. There are some non-disabled researchers who are very aware of privilege. There are others, some of whom I know personally, who are researching issues relating to disability where they, too, are objectified. But for the most part, with society still privileging non-disability and normative viewpoints, I believe that disabled people are the most aware of non-disabled privilege. I don’t think this will always be the case – at least, I hope not. And I don’t expect all disability researchers to be disabled. But I think more should be. We would frown upon a Race Studies department full of white researchers. We wouldn’t be too sure about a Gender Studies department consisting of only heterosexual men. Why are we happy that the majority of research into disability is still being conducted by non-disabled people?
Am I wrong about this? I’m aware that it’s a VERY controversial viewpoint. Do you, like Barnes and Oliver (1997), think there should be more disabled researchers in the academy? Or is disability different from race, gender etc. in this respect? Thoughts welcome.
P. Abberley, 1991, ‘Disabled People: Three Theories of Abnormality’
C. Barnes, 2001, ‘Emancipatory Disability Research: Project or Process?’
Barnes and Oliver, 1997, ‘All We Are Saying is Give Disabled Researchers a Chance’
S. Harding, 1986, ‘Feminism and Methodology’, in ‘Feminisms’, 1997, ed. Kemp and Squires, pp.160-70
M. Oliver, 1992, ‘Changing the Social Relations of Research Production?’
M. Oliver, 1997, ‘Emancipatory Research: Realistic Goal or Impossible Dream?’
Priestley and Stone, 1996, ‘Parasites, Pawns and Partners: Disability Research and and the Role of Non-Disabled Researchers’
Rioux and Bach, 1984, ‘Disability Is Not Measles: New Research Paradigms in Disability’
B. Skeggs, 1997, ‘Formations of Class and Gender’
G. Zarb, 1997, ‘Researching Disabling Barriers’
Several of these links will take you to the Leeds Disability Archive, a fantastic resource with many open-access articles on disability theory and research.