Defining and contesting vulnerability – disablism versus emancipatory research
It was noted at the outset that ‘vulnerability’ is an imposed category – one that some ‘vulnerable’ groups would challenge. In this section we consider the disability debate in relation to ethics and the research process.
The following text is lightly adapted from chapter 6 of Carol Thomas’s book Sociologies of Disability and Illness: Contested Ideas in Disability Studies and Medical Sociology (Palgrave Macmillan, 2007). 1 Writing primarily in the contexts of research with people who have disabilities, Professor Thomas outlines the potentially negative impacts of framing groups in terms of their disability (‘disablism’). She presents the fundamentally different approach of the emancipatory research tradition, which emphasises the social model of disability and placing the researcher in a responsible and collaborative role in relation to those researched. Whilst Professor Thomas’s main focus is on research with people who have disabilities, the methodological contrast can equally be applied to research with other vulnerable groups. Other disadvantaged and vulnerable groups – e.g. homeless people – are similarly susceptible to the negative consequences of a social research which focuses on fixed attributes of their situation – thereby serving to entrench social stereotypes and reinforce the status quo. By contrast, the emancipatory research tradition would engage them as ‘co-productive’ social actors.
The practice and ethics of social science research on disability, whether it has an experiential or any other focus, are topics of great importance in both disability studies and medical sociology, but disability studies’ concerns about the politics of research in the 1990s placed research activities centre stage (Abberley, 1992; Oliver, 1992; Zarb, 1992).
At stake, from a disability studies perspective, are answers to questions such as: whose interests are served by the proposed research? Whose side is the researcher on? For whom were classificatory schemas for use in research on disability developed – most notably, the WHO’s ICIDH and ICF 2. Disability studies writers argued that research activity ‘on disabled people’ in sociology and other disciplines is just another arena in which disablism can flourish, in a number of ways. Whether or not it does hinges on many things, including:
- the expectations and conditions tied to research funding.
- the framing of research questions and project designs.
- researchers’ values and the way that they relate to and treat disabled people in research projects.
- the appropriateness of data collection methods (for example, when working with people with learning difficulty).
- the theory (and prejudices) behind the interpretation of data and the generation of new knowledge.
- the presentation and use made of research findings.
A famous and oft-cited ‘case’ of disablist research concerns research undertaken on living conditions at the Le Court Cheshire Home (and other institutions) in England in the 1960s by social scientists Eric Miller and Geraldine Gwynne from the Tavistock Institute (1972) (funded by the Department of Health and Social Security). Disabled residents in Le Court, including Paul Hunt, initially supported the entry of these researchers to the premises so that the realities of disabled people’s institutionalised lives could be uncovered. But Hunt and other were horrified by the study’s outcome. Miller and Gwynne reported on the inevitability of the ‘social death’ experienced by ‘the crippled’ in institutional settings, and failed to condemn the institutional regime; they identified with Le Court’s management and staff rather than with the interests of residents (see Hunt, 1981; Finkelstein, 1991). In his account of this episode, Vic Finkelstein (1991) describes how Miller and Gwynne brought prevailing cultural attitudes about disability and dependency with them into the research setting, and failed to think beyond their prejudices.
Together with such ‘real life’ experiences, the theoretical innovations in disability studies in the 1980s and early 1990s led to the development and advocacy of emancipatory research (Oliver, 1992; Barnes et al, 1999) The principles of the emancipatory research approach are as follows:
- adherence to the social model of disability (i.e. the rejection of individual/medical/personal tragedy models).
- adoption of a partisan research approach (so denying researcher objectivity and neutrality) in order to facilitate the political struggles of disabled people.
- rejection of the traditional researcher-researched hierarchy and the adoption of an equalised set of research relationships.
- pluralism in choice of methodologies and methods.
(adapted from Mercer, 2002: 233)
The emancipatory approach does not centre on the use of particular tried and tested qualitative or quantitative research methods and techniques per se, but on the features and qualities of the relationships between researchers and those researched (Zarb, 1992), together with the theoretical underpinnings and purpose of any research. In short, ‘The emancipatory mode is geared to praxis-oriented research that exposes social oppression and facilitates political action to transform society’ (Mercer, 2002: 233).
Much has been written on these and related themes within disability studies (see ‘Bibliography and Suggested Reading’ below). One related theme has been the role and responsibility of non-disabled researchers in disability research (Stone & Priestley, 1996, Priestley, 1997). It is of note that Michael Oliver, an architect of emancipatory research, later came to question the possibility of implementing it in full (Oliver, 1997). Others have argued that a great deal of valuable research has been undertaken that aspires, or comes close, to meeting the requirements of the emancipatory approach, even if reference to it is only implicit (Barnes, 2003).
Medical sociologists, comfortable with their own research ethics, practices and methods, have not shared in the enthusiasm for ‘emancipatory research’ on disability or chronic illness. While researchers in the interactionist and conflict theory traditions have sought to uncover the plight of those deemed socially deviant and socially disadvantaged, and have championed the interests of patients in clinical and public health arenas, most would refuse to call their approach partisan or emancipatory. The aspiration to be seen as ‘objective’ and ‘balanced’ retains a powerful disciplinary hold. Moreover, ethical standards and ‘independence’ are believed to be held in check by UK Research Council guidelines, professional codes of practise and academic peer review processes. Nevertheless, feminist researchers in the social sciences have long sought to develop and defend anti-oppressive research practices in the gender domain (Maynard & Purvis, 1994; Truman et al, 2001).
Mike Bury is one of the few medical sociologists to comment on the research challenges posed by writers in disability studies. His response has been to defend both ‘academic freedom’ and the research tradition in his own and related academic disciplines (Bury, 1996a, 1996b, 1997); indeed, he asserts that ‘official’ research such as the OPCS disability study (Martin et al, 1988) resulted in important policy-related gains for disabled people. In his view, there is no evidence that medical sociology research has alienated or harmed disabled people, though he conceded in the late 1990s that:
In the future it seems clear that (funded) research projects will need to take account of the political agendas of specific groups of the chronically sick and disabled more than they have in the past. The active involvement of ‘client groups’ in research design and conduct is rapidly growing. One benefit of the current debate is the view that medical sociologists might have held earlier, that they were providing a voice for the voiceless, will need to be more carefully considered in the future.
(Bury, 1997: 140)
Finally, many contemporary researchers in both medical sociology and disability studies have been influenced by feminist and constructionist thinking on the epistemological status of experiential accounts. This has highlighted the socially constructed and ‘positioned’ (or ‘located’) character of all knowledge, including the knowledge embedded in the narratives shared by interviewees in research contexts and, of course, in the analytical accounts written up and published by researchers. The need for researcher reflexivity is underlined, and the ‘mediated’ character of interview data accepted: that is, it is known that researchers cannot straightforwardly access or recount ‘the reality’ of lived experience. This is not at all to imply that interviewees’ deliberately fabricate their accounts, though it is well known that interviewees may tell researchers what they think the researcher wishes to hear. Rather, the contention, now widely accepted, is that we all construct our stories and truths in the process of communicating them to others and ourselves, and that everybody makes continuous use of social discourses or public narratives in ‘telling’ and ‘interpreting’.
Abberley, P. (1992) Counting Us Out: a discussion of the OPCS disability surveys, Disability, Handicap and Society, 7 (2):139-155.
Barnes, C. and Mercer, G. (eds) (1997) Doing Disability Research. Leeds: The Disability Press
Barnes, C. (2003) What a Difference a Decade Makes: reflections on doing ‘emancipatory’ disability research. Disability & Society, 18(1): 3-17.
Finkelstein, V. (1991) Disability: An Administrative Challenge? In M. Oliver (ed) Social Work – Disabling People and Disabling Environments. London: Jessica Kingsley.
Goodley, D. and Moore, M. (2000) Doing Disability Research: activist lives and the academy. Disability & Society, 15(6):861-82.
Mercer, G. (2002) Emancipatory Disability Research. In C. Barnes, M. Oliver and Barton, L. (eds) Disability Studies Today. Cambridge: Polity.
Moore, M., Beasley, S. and Maelzer, J. (1998) Researching Disability Issues. Buckingham: Open University Press.
Oliver, M. (1992) Changing the Social Relations of Research Production? Disability, Handicap and Society, 7 (2): 101-114.
Oliver, M. (1997) Emancipatory Research: realistic goal or impossible dream? In C. Barnes and G. Mercer (eds) Doing Disability Research. Leeds: The Disability Press.
Rioux, M. and Bach, M. (eds) (1994) Disability is Not Measles. New Research Paradigms in Disability. New York, Ontario: Roeher Institute.
Shakespeare, T. (1997) Rules of Engagement: changing disability research. In L.Barton and M. Oliver (eds) Disability Studies: Past, Present and Future. Leeds: The Disability Press.
Swain, J., French, S. and Cameron, C. (2003) Controversial Issues in a Disabling Society. Buckingham: Open University Press.
Thomas, C. (1999) Female Forms: Experiencing and understanding disability. Buckingham: Open University Press.
Truman, C., Mertens, D.M. and Humphries, B. (2000) Research and Inequality. London: UCL Press.
Walmsley, J. (2002) Normalisation, Emancipatory Research and Inclusive Research in Learning Disability. Disability & Society, 16 (2): 187-206.
Zarb, G. (1992) On the road to Damascus: first steps towards changing the relations of disability research production. Disability, Handicap and Society, 7(2): 125-38.
Bury, M. (1997) Health and Illness in a Changing Society. London: Routledge.
Hunt, P. (1981) Settling accounts with the parasite people: a critique of ‘A Life Apart’ by E.J. Miller and G.V. Gwynne. Disability Challenge, 1 (May): 37-50.
Maynard, M. and Purvis, J. (eds) (1994) Researching Women’s Lives from a Feminist Perspective. London: Taylor and Francis.
Priestley, M. (1999) Disability Politics and Community Care. London: Jessica Kingsley Publishers.
Stone, E. and Priestley, M. (1996) Parasites, Pawns and Partners: disability research and the role of non-disabled researchers. British Journal of Sociology, 47 (4): 699-716
1 Reproduced with the publisher's permission.
2 World Health Organization (WHO). ICIDH: International Classification of Impairments, Disabilities and Handicaps. ICF: International Classification of Functioning. See WHO website.