The Ethics of Researching and Representing Dis/Ability

Authored by: Dan Goodley , Rebecca Lawthom

The Routledge International Handbook on Narrative and Life History

Print publication date:  October  2016
Online publication date:  October  2016

Print ISBN: 9781138784291
eBook ISBN: 9781315768199
Adobe ISBN: 9781317665717


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This chapter reflects upon three research projects that Dan had collaboratively led with colleagues and brings in Rebecca to critically reflect with Dan on the theoretical, analytical and relational issues raised by these projects: issues that are all inherently ethical considerations. The feminist philosopher Rosi Braidotti (2013, p. 170) defines a good theory as ‘creating new concepts as a source of inspiration’ and, crucially, that theorizing brings with it consequences; ‘thinking is about the invention of new concepts and new productive ethical relations’ (p. 104, our italics). In this chapter we seek to explore the ethics of representation, particularly as it relates to dis/ability research. Our starting point is that any encounter with ethics should include the reflexive consideration that researchers must reflect on (and account for) the possible implications of their intellectual work on potential perceptions (and conceptions) of those participants that they work with. These responsibilities are heightened when one’s research engages with people whose lives are often ignored by educational and social scientific literature: disabled people. We consider the role of narrative inquiry in the study of dis/ability: an emergent trans-disciplinary area of study that seeks to engage with the dual processes of disablism/ableism and disability and ability. We then critically reflect on three dis/ability projects that drew upon narrative inquiry to explore the ethics of representing dis/ability. Project 1—Parents, professionals and disabled babies: Towards enabling care, was an ethno-graphic study of disabled babies and young children, their families and associated professionals. A key learning point from this work is that dis/ability knowledge is always being contested, and this places an ethical duty of care upon researchers in relation to how they frame dis/ability. Project 2—Does every child matter, Post-Blair? The interconnections of disabled childhoods examined what life was like for disabled children/young people (aged 4–16) and their families in the aftermath of the changes for children’s policy and practice since 1997 set in motion by the New Labour government in Britain. As in the first project we combined ethnography and interviews with children, their families, communities and professionals. We discovered that ethically researching dis/ability requires creative social theories that respond affirmatively to the personal and political actions of disabled children and their families. Project 3—The psychopathology of the normals involved sending an email to a disability research mailing list asking disabled members to share their ‘favourite’ stories of how the non-disabled respond to disability. One consequence of this project was that Dan and some of the email respondents participated in an ethical and theoretical debate about how to best understand the emergent stories. The debate was, in part, resolved through recognizing that dis/ability and disablist /ableist processes are co-constituted at the mundane level of the everyday as well as being structurally and hegemonically located. The chapter concludes with some further considerations for narrative research and the study of dis/ability.

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