Disability Studies Quarterly
Spring 2004, Volume 24, No. 2
<www.dsq-sds.org>
Copyright 2004 by the Society
for Disability Studies


Identity, Positionality and Power: Issues for Disabled Researchers.
A Response Paper to Broun and Heshusius

Claire Tregaskis
School of Education, University of Sheffield
388 Glossop Road, Sheffield S10 2JA

Introduction

Disability theory has had a major impact on the lives of many disabled people in western capitalist societies. By providing an alternative explanation for their oppression to that offered by the individualising and deterministic medical model, it has demonstrated that, just as patriarchy systemically oppresses and excludes women, so disablism oppresses and excludes people with impairments (Thomas, 1999). Crucially, disability theory has begun to transform debates around integration and inclusion by highlighting the need to focus on challenging structural barriers within society that act , rather than attempting to change the appearance, behaviour and performance of disabled people so that they conform to externally-imposed normative standards (Finkelstein, 1980; Oliver, 1990, 1996; Thomas, 1999)

However, within disability studies, areas of contestation remain (Tregaskis, 2002). Of particular relevance to a discussion of the Broun and Heshusius paper we are concerned with here is the ongoing debate over the relative importance of 'private troubles' and 'public issues' in the ongoing development of disability theory. Writing as disabled feminist/disability theorists, both Morris (1991) and Thomas (1999) have argued that those who dominate academic disability studies generally, White men have tended to downplay discussion of personal experience of disablist oppression in favour of addressing wider structural barriers to inclusion. However, Morris and Thomas both suggest that this exclusive concentration on bringing about change in public domains is inappropriate. Adopting instead the feminist-inspired approach that 'the personal is political', they have argued that it is equally important to give a public voice to individual disabled people's experiences, to show how disablist oppression negatively affects their lives, and through that to show the fundamental inter-connectedness of our personal and social worlds. As Thomas points out, the disapproval by male disability theorists (e.g. Finkelstein, 1996) of public discussion of the experience of impairment has direct parallels with that of some male-dominated left-wing political groups in the 1970s, who argued that issues like domestic violence and sexual relationships were not suitable subjects for public and political debate (1999, pp.73-74). Disability studies needs to learn from feminism that actually such personal issues do have a clear political dimension, and that as such more analysis of the personal experience of disability is needed (Reeve, 2002; Thomas, 1999).

To date however, perhaps as a result of this orthodoxy of concealment, disabled people's experiences of conducting disability research have tended to focus on reporting their research findings, and have not often openly discussed personal disability issues arising for disabled researchers. The Broun and Heshusius paper discussed here thus breaks important new ground in its public acknowledgement of the personal costs that disabled researchers may incur in conducting disability research. In so doing it also connects to a wider recent methodological trend of acknowledging the inevitability of the researcher having an effect on, and in turn being affected by, the settings in which they conduct research (Coffey, 1999). Such honesty on the part of a disabled writer is refreshing, and raises issues around the need for supervision and support for all researchers who seek to engage with subjects that are personally involving. As the paper graphically demonstrates, Broun's involvement in her research project has had a fundamental effect on her self-image, and has seemingly changed her identity forever. As such it should serve as a warning to others that engaging with work in which we have deep personal investments may be at best unsettling and at worst self-destructive.

However, perhaps as a result of the focus on the researcher's own transformative research experience, there is in the paper a comparative under-reporting of the effects of research participation on the other women involved in the study. The next section of this response focuses on the possible consequences of that omission both for the participants and the research process, before turning in the final part to further discussion of the issues raised in the paper for disabled researchers conducting disability research.

Methodologies and research relationships

The first part of the paper appears to problematise the position of the researcher, as Broun describes her rejection of a range of possible qualitative research approaches in favour of her eventual choice of feminist oral history, an approach which she felt allowed for more collaboration and respect for the participants than the other methods she previously considered. It is quite right that she should account for her choice of methodology. However, in my view her analysis of the emancipatory paradigm was based on a false premise, as revealed in her comment that:

"I could not imagine empowering her in any way through the research process".

My understanding of the emancipatory research approach as used in disability studies is that it aims to promote and support disabled people's self-empowerment. In other words, the researcher's job is not to empower the research participants. Rather, the idea is that she places her research skills at their disposal, and works with them on an issue they want to deal with. By sharing or giving up control of the research process and the research findings to the participants, they are then able to use the research in the ways they want, in support of their wider struggles against oppression (Moore, Beazley and Maelzer, 1998; Stone and Priestley, 1996). From what is written in the paper, I surmise that this was not the approach adopted in this research, and in that respect Broun's rejection of the emancipatory methodology was entirely appropriate, because it could never have achieved what she thought it should be able to. Empowering the participants was never in her gift – all she could hope to do was to support them on their own voyages of self-discovery.

However, more worrying for me than the misrepresentation of the aims of emancipatory research was the impression I drew from the discussion of methodology and research methods that the researcher had not sufficiently interrogated either her dual positioning as both researcher and participant, or the effects that participation in the research may have had on the other women. This was particularly unfortunate, given that the first half of the paper ostensibly concentrates on the search for a research approach that would not further oppress the participants. However, some statements are made here which I felt required further substantiation. For example, no justification is given for Broun's "natural, straightforward and common sense" decision to include herself as a research participant. Presumably she felt that as a disabled person she had no need to further justify her dual inclusion in the project. Yet actually there was no automatic reason why she should have included herself in the sample, and so I would have liked to have seen more justification for this decision. Further, it was inevitable that as the researcher she will undoubtedly have had more situational power than the other participants, and that this will have affected both the conduct and outcomes of the research. However, the impact of power relations on the research process is not acknowledged or discussed. As Stone and Priestley (1996) point out, being a disabled person does not automatically mean that the research that person carries out will be non-oppressive. Disabled researchers still need to take steps to minimise the risk that they may (even unwittingly) abuse their power. As it is, the analysis presented here suggests insufficient understanding of the influence of power relations in research.

I wish to suggest that as researchers in disability studies we can afford to take nothing for granted in designing and conducting our fieldwork studies. We have to be scrupulous about honestly exploring our motives for conducting each piece of research, designing it in such a way that we take the participants' needs into account, and even changing the focus of the research altogether if there is a danger that we cannot appropriately support either the participants or ourselves. A related issue to be considered in conducting research with people who are 'like us' was first uncovered by feminist researchers. This is the potential for over-identification with the researcher, where as a result the participants tell the researcher intimate details of their lives because they believe their experiences to be the same, an openness which they may later come to regret (Finch 1993). Clearly from what Broun says here, some participants did hold back from telling her about all aspects of their lives. However, I remain concerned that the paper does not discuss the use of research strategies such as giving the women their interview transcripts back to check, or offering them power of veto over inclusion of their data in the final research report, which would have shown that safeguards had been put in place to help lessen her power over them.

Broun's motivation for her research of showing disabled women as resilient, strong and capable is admirable, but I would have liked to have seen more analysis of the effects of participation on the other women, especially given the profound impact the research has had on her own life. Instead there is an apparent assumption in the paper that, because the women had previously been involved in other research projects, taking part in this research had not affected them in any way. This may indeed have been the case, but the paper does not discuss any follow-up conversations with them, or tell us what the women thought about having their stories told. The need for such an analysis appears particularly relevant given the focus in the final section of the paper on the need to recognise the relationship between - and reciprocal mutual construction of - self and other in the research process. Surely if Broun's sense of herself was changed through her contact with these women, so too their own self-perceptions must have been altered in some way by the experience. And what, if anything, did they get out of the research? These are uncomfortable questions that may challenge our assumed right as researchers to keep control of the research process, especially given that often it is we as researchers who are the main beneficiaries of the work we do. But I think they are the sort of questions we need to keep asking ourselves if our research is to truly reflect the reality of our inter-dependence with research participants.

Dilemmas for disabled researchers

The middle part of the paper discusses with great courage and honesty the profound impact that conducting the research has had on Broun's self-image and self-esteem. In reading her account, I doubt that I was alone in recognising some difficult issues from my own history of trying to come to terms with the whole of who I am. Although her focus is on her struggle to acknowledge and own her impairment, I suspect that her story will also ring true with non-disabled researchers who are engaged in work that is similarly deeply personally involving. However, as Mac and Ghaill (1991) has previously stated, such stories of personal struggle for researchers often tend to remain within our research diaries, or are only published once our main research findings have been safely published and accepted. In this context, Broun's paper is extremely important in bringing out into the open some of these deeply personal issues that affect how we conduct our research, and how that work impacts on our lives as a whole. She herself puts it beautifully:

"I had no idea that, through the study, I would be forced to see myself in the mirror of reality".

My heart went out to her as I read her description of the internalised oppression that had previously prevented her being able to embrace the totality of her self, and that had led her to spend so much time and energy protecting other people from her difference. I wanted to say to her – "Sister, let them worry. You've got better things to do with your time". And it looks from what she says as if some years on she has become increasingly able to let go of those constraints, and to spend more energy looking after herself. But I also think, if my own experience is anything to go by, that the assimilation process she discusses here is probably always ongoing, and that we never fully connect with everything we are at once. I can also understand something of the difficulty she found in not being able to ask the other women questions which she herself would have found personally intrusive. Given that her research focus here was on stressing the positives in disabled women's lives, I think her reticence on this matter is perfectly acceptable. After all, there is plenty written about how hard our lives are, and I suspect that hasn't always helped to confound non-disabled people's view of our lives being ones of constant struggle – even though this is probably no more or less true of disabled people than of other oppressed groups. As she says, her work is probably less multi-dimensional than it might have been had she discussed with the women all aspects of their lives. Perhaps if she were to conduct similar research in the future, knowing what she does now about her own struggle towards self-discovery, she might find that asking such questions becomes easier because she has faced down her own demons. Equally, however, she might conclude that given the emotional turmoil she has faced through conducting this research, it is still not appropriate to ask other disabled people intrusive questions about their lives.

I believe that Broun's description of the long-term distress she has experienced as a result of conducting this research indicates some important lessons for the wider research community about the need to safeguard our own physical and emotional well-being at work. In this respect, I agree with her that probably we often have unconscious reasons for choosing the research projects we do, even if we are not always aware of such drives at the outset. In these circumstances, I wish to suggest that putting procedures in place that can provide support if we need it should form part of the routine planning process for all projects. I understand from colleagues who have worked on abuse cases with children that they themselves routinely have access to counselling services during such studies. However, this is not a service I have previously come across in disability research. I suggest that such safeguards may be essential, and would demonstrate a more serious commitment to our own health and well-being. Indeed, it may be necessary if we are to be able to continue to conduct disability research over time without risking excessive stress and burn-out.

As a disabled researcher myself I have become increasingly aware of the dangers I face in conducting research that is so personally involving. However, in my last project I was fortunately aware from the outset that the area of study – non-disabled people's attitudes towards disabled users of a leisure centre - might expose me to added oppression on the grounds of my impairment status. As a result, with the support of my supervisor I experimented with using a support group as personal back-up for the project. In so doing, a crucial factor for success was his understanding that I needed this support for professional as well as personal reasons. My intention was that by being able to unload within the support group some of the negative experiences I faced in conducting the research, I would then be freed up to carry on with the study more effectively. My supervisor's commitment to a social model research approach meant he immediately supported this strategy, and did not assume I wanted back-up because I was just too weak and feeble to face up to oppression by myself. Instead, as he put it: "Some battles are too big to fight alone". On several occasions this support group proved essential in giving me a safe space to unload the fears and the pain that the research caused me, and it is a strategy that I will definitely use again in future projects. However, such an approach does depend for its success on research supervisors and project managers understanding and acknowledging the potential for research to throw up difficult personal issues, and on their seeing the provision of support as a positive way of counter-acting the negative effects of such experiences, rather than as sign of weakness. I believe that as a research community we owe it to ourselves to make this sort of imaginative commitment to our personal and professional futures.

Conclusion

In this response paper I have expressed reservations about some of the assumptions underpinning the Broun and Heshusius research, especially those around Broun's inclusion as both researcher and participant. In particular I have argued for a greater acknowledgement in their work of the inevitable impact of power relations on the research process described here. I believe that this additional layer of analysis would have gone some considerable way towards meeting their own concluding request for more recognition of the mutual constitution of self and other that exists in all relationships between researchers and research participants.

This criticism aside, I believe their paper raises other important issues - about the ways in which we conduct research with people who are more or less "like us", the need to recognise the multiplicity and complexity of our own investments in the research process, and the effect that our conscious and unconscious decisions may have on the nature and direction the research takes. It is important that such issues are raised and openly discussed within the research community as part of the ongoing debate about the relative merits of "objective" and "subjective" research. It is also timely that a disabled researcher has chosen to discuss openly the personal costs to her of research participation. This supports my own feeling that for disabled people, conducting disability research can never be a purely academic issue in the way that studying a subject of less personal significance might be. As disabled people we should learn from Broun's experience that we need to put safeguards in place for our own research projects, to minimise the risk of overload and burn-out described here.

References

Coffey, A., (1999) The Ethnographic Self: fieldwork and the representation of identity, London, SAGE

Finch, J., (1993) 'It's Great To Have Someone To Talk To: ethics and politics of interviewing women', in M. Hammersley (ed) Social Research: philosophy, politics and practice, London, SAGE, pp.166-180

Finkelstein, V., (1980) Attitudes and Disabled People: issues for discussion, New York, World Rehabilitation Fund

Finkelstein, V., (1996) 'The disability movement has run out of steam', Disability Now, February 1996, p.11

Mac An Ghaill, M., (1991) 'Young, Gifted and Black: methodological reflections on a teacher/researcher', in G. Walford (ed) Doing Educational Research, London, Routledge

Moore, M., Beazley, S., and Maeltzer, J., (1998) Researching Disability Issues, Buckingham, Open University Press

Morris, J., (1991) Pride Against Prejudice, London, The Women's Press

Oliver, M., (1990) The Politics of Disablement, Basingstoke, Macmillan

Oliver, M., (1996) Understanding Disability: from theory to practice, Basingstoke, Macmillan

Reeve, D., (2002) 'Negotiating Psycho-emotional Dimensions of Disability and their Influence on Identity Constructions', Disability and Society, 17 (5), pp.493-508

Stone, E., & Priestley, M., (1996) 'Pawns, Parasites and Partners: disability research and the role of non-disabled researchers', British Journal of Sociology, 47 (4), pp. 699-716

Thomas, C., (1999) Female Forms: experiencing and understanding disability, Buckingham, Open University Press

Tregaskis, C., (2002) 'Social Model Theory: the story so far...', Disability and Society, 17 (4), pp.457-470