Who is “us” in “nothing about us without us”? Rethinking the politics of disability research

Disability research (and disability studies) emerged from the activism of disabled people who not only challenged oppressive legal and social structures, but also the ways in which research was used to legitimate that oppression. At the forefront of this challenge in the UK was Paul Hunt (Stone and Priestly, 1996). Hunt (1981) discredited the work of formerly esteemed researchers Eric Miller and Geraldina Gwynne by highlighting the ableist and unethical basis of their work. Miller and Gwynne had been commissioned to research the experiences of disabled people who were confined to institutional living following agitation by The Union of Impaired People Against Segregation (UIPAS). However, Miller and Gwynne's findings focused on improving the lot of practitioners rather than the quality of life and rights of disabled people. Hunt (1981) challenged Miller and Gwynne's claim to objective findings by demonstrating that they had prioritised the perspective of practitioners over disabled people and reiterated wider social prejudices about disability. For example, Miller and Gwynne argued that in residential care, "the essential task to be carried out is to help the inmates to make their transition from a social death [e.g. being/becoming disabled] to physical death" (1981:10). Miller and Gwynne's depiction of disabled people throughout their work was discriminatory and inflammatory, positioning disabled people as burdens and parasites. Hunt, however, subverted their discourse: "Miller and Gwynne make various references to residents as parasites and see us as essentially feeding off society not only economically but emotionally as well … The real parasites are those like Miller and Gwynne who grow fat by feeding on others miseries" (1981: 11). Hunt's analysis of the power and politics of research laid the foundations of disability research. He highlighted the politics of objectivity and accountability, exploitation and oppression and mandated that disability research should benefit disabled people.

References
Adame, AL (2014) “There Needs to be a Place in Society for Madness”: The Psychiatric Survivor Movement and New Directions in Mental Health Care. Journal of Humanistic Psychology, 54(4):456-475. DOI:10.1177/0022167813510207
Barnes, C (2003) What a Difference a Decade Makes: Reflections on doing ‘emancipatory’ disability research. Disability & Society, 18(1):3-17. DOI:10.1080/713662197
Blackman, L (2007) Psychiatric Survivors and Bodies of Resistance. Body & Society, 13(2): 1-23. DOI:10.1177/1357034X07077770
Branfield, F (1998) What are you doing here? “Non-disabled” people and the disability movement. Disability & Society, 13:143-144. Doi:10.1080/ 09687599826966
Braye, S; Gibbons, T; Dixon, K (2013) Disability 'Rights or 'Wrongs'? The Claims of the International Paralympic Committee, the London 2012 Paralympics and Disability Rights in the UK. Sociological Research Online 18(3)16. DOI:10.5153/sro.3118
Brighton, J (2015) Narratives of spinal cord injury and the sporting body: An ethnographic study. Unpublished PhD thesis. Leeds Beckett University
Brighton, J (2015a) Researching Physical Disability in Sport: Reflections from an (Able) Bodied Ethnographer, in I Wellaerd (ed) Researching Embodied Sport: Exploring Movement Cultures. London: Routledge.
Brighton, J & Williams, TL (2018) Using Interviews to Explore Experiences of Disability in Sport and Physical Activity, in R Metclad & C Mackintosh (eds) Researching Difference in Sport and Physical Activity. London: Routledge.
Brown, N & Leigh, J (2018) Abelism in academia? Where are the disabled and ill academics. Disability & Society, DOI:10.1080/09687599.2018.1455627
Butler, J (1993) Bodies that Matter. London: Routledge
Butler, J (1991) Imitation and Gender Insubordination, in D. Fuss (ed) Inside Out: Lesbian Theories; Gay Theories. London & New York: Routledge.
Clare, E (2017) Brilliant Imperfection: Grappling with Cure. Durham: Duke University Press
Connell, RW (1995) Masculinities. Cambridge MA: Polity.
Craib, I. (2000) Narrative as bad faith. M. Andrew, S. Sclater, C. Squire and A Treacher (Eds), Lines of narrative. London: Routledge.
Denzin, N (1989) Interpretive Biography. London: Sage
Faulkner, A (2004) The Ethics of Survivor Research. York: The Joseph Rowntree Foundation
Frank, AW (2010) Letting stories breathe: A socio-narratology. Chicago: University of Chicago Press:
Frank, AW (2013) The wounded storyteller (2nd ed). London: University of Chicago Press.
Frederick A & Shifrer D (2019) Race and Disbility: From Anology to Intersectionality. Sociology of Race and Ethnicity 5(2): 200-214. DOI: https://doi.org/10.1177/2332649218783480
Haas, PM (1992) Introduction: Epistemic communities and international policy coordination. International Organization 46:1-35.
Hannam-Swain, S (2018) The additional labour of a disabled PhD student. Disability & Society, 33(1):138-142. DOI:10.1080/09687599.2017.1375698
Hunt, P (1981) Settling Accounts with the Parasite People: A critique of ‘A Life Apart’ by EJ Miller and GV Gwynne. Disability Challenge, 1:37-70
Inahara, M (2009) The Body Which is Not One: The Body, Femininity and Disability, Body & Society 15(1):47-62. DOI:10.1177/1357034X08100146
Inckle, K (2005) Who’s Hurting Who? The Ethics of Engaging the Marked Body. Auo/Biography, 13(3): 227-248
Inckle, K (2007) Writing on the Body? Thinking Through Gendered Embodiment & Marked Flesh. Newcastle-upon-Tyne: Cambridge Scholars Publishing.
Inckle, K (2010) Flesh Wounds? New Ways of Understanding Self-Injury. Ross-on-Wye: PCCS Books.
Inckle, K (2015) Debilitating Times: Compulsory Ablebodiedness and White Privilege in Theory and Practice, Feminist Review special edition on Debility and Frailty, 111: 42-58
Inckle, K (2018) Unreasonable Adjustments: The additional, unpaid labour of disabled academics. Disability & Society, 33(8): 1372-1376
Inckle, K (2019) Disabled Cyclists & the Deficit Model of Disability, Disability Studies Quarterly, 39(4)
Inckle, K (2020) Disability, Cycling & Health: Impacts and (Missed) Opportunities in Public Health. Scandinavian Journal of Disability Research, 22(1): 417-427
Inckle, K (2020a) Poetry in Motion: Qualitative analysis, I-poems and disabled cyclists. Methodological Innovations, 13(2): 1-13
Kafer, A (2013) Feminist, Crip, Queer. Indiana: Indiana University Press
Kirsh, M (2000) Queer Theory & Social Change. London: Routledge
Kitchen, R (2000) The Researched Opinions on Research: Disabled people and disability research. Disability & Society, 15(1):25-47. DOI:10.1080/09687590025757
Leder, D (1990) The Absent Body. Chicago: University of Chicago Press
Malik, N (2020) Despite being vilified in the rightwing media, Black Lives Matter will endure.
The Guardian 20th Sept. https://www.theguardian.com/commentisfree/2020/sep/20/black-lives-ma...
Mills, CW (1959) The Sociological Imagination. Oxford: Oxford University press
Neff, K (2020) Self-Compassion. https://self-compassion.org/the-three-elements-of-self-compassion-2/
Nguyen XT (2018) Critical Disability Studies at the Edge of Global Development: Why Do We Need to Engage with Southern Theory? Canadian Journal of Disability Studies, 7(1): 1–25. https://doi.org/10.15353/cjds.v7i1.400
Oliver, M (1992) Changing the Social Relations of Research Production? Disability & Society, 7(2): 101-114. DOI: 10.1080/02674649266780141
Olsen, J; Griffiths, M; Soorenian, A and Porter, R (2020) Reporting from the Margins: Disabled Academics Reflections on Higher Education. Scandinavian Journal of Disability Research, 22(1): 265–274. DOI:http://doi.org/10.16993/sjdr.670
Pembroke, LR (1996) Self-injury: Perspectives from Personal Experience. London: Survivors Speak Out.
Peers, D (2012) Interrogating disability: the (de)composition of a recovering Paralympian. Qualitative Research in Sport, Exercise and Health, 4 no.2: 175-188. DOI:10.1080/2159676X.2012.685101
Purdue, D & Howe, D (2012) See the sport, not the disability: exploring the Paralympic paradox. Qualitative Research in Sport, Exercise and Health, 4(2): 189-205. DOI:10.1080/2159676X.2012.685102
Ribbens, J and Edwards, R (eds) (1998) Feminist Dilemmas in Qualitative Research. London: Sage
Roberts, H (ed) (1990) Doing Feminist Research. London: Routledge
Scarry, E (1985) The Body in Pain. Oxford: Oxford University press.
Shakespeare, T (1996) Rules of Engagement: Doing disability research. Disability & Society, 11(1): 115-121
Smith, B & Sparkes, A (2004) Men, Sport and Spinal Cord Injury: An Analysis of Metaphors and Narrative Types. Disability & Society, 19(6): 613-626
Smith, B & Sparkes, A (2005) Men, Sport, Spinal Cord Injury, and Narratives of Hope. Social Science & Medicine, 61(5): 1095-1105.
Spandler, H; Anderson, J & Sapey B (2015) Madness, Distress & The Politics of Disablement. Bristol: Policy Press
Sparkes, A (1996) ‘The fatal flaw: A narrative of the fragile body-self’. Qualitative Inquiry, 2 (4), pp. 463-495.
Sparkes, A (2002) Telling Tales in Sport & Physical Activity: A Qualitative Journey. Champaign, IL: Human Kinetics Press.
Sparkes, A (2003) Bodies, Identities, Selves: Autoethnographic Fragments and Reflections, pp. 51-76, in J Denison & P.Markula (eds) “Moving Writing”: Crafting Movement and Sport Research. New York: Peter Lang.
Sparkes, A (2004) From Performance to Impairment: A Patchwork of Embodied Memories, in J. Evans, B. Davies & J. Wright (eds) Body Knowledge and Control. London: Routledge.
Sparkes, A; Brighton, J and Inckle, K (2014) Disabled Sporting Bodies as Sexual Beings: Reflections & Challenges, in J Hagreaves & E Anderson (eds) Routledge Handbook of Sport, Gender & Sexuality. London: Routledge.
Sparkes, A; Brighton, J & Inckle, K (2018a) ‘It's a Part Of Me’: An Ethnographic Exploration Of Becoming a Disabled Sporting Cyborg Following Spinal Cord Injury. Qualitative Research in Sport & Exercise, 10(2): 151-166
Sparkes, A; Brighton, J & Inckle K(2018b) Imperfect Perfection and Wheelchair Bodybuilding: Challenging Ableism or Reproducing Normalcy? Sociology 52(6): 1307-1323
Sparkes, A; Brighton, J & Inckle K (2021) ‘I Am Proud of My Back’: An Ethnographic Study of the Motivations and Meanings of Body Modification as Identity Work Among Athletes with Spinal Cord Injury. Qualitative Research in Sport, Exercise and Health, 13(3): 407-425.
Sparkes, AC; Pérez-Samaniego, V; Smith, B (2012) Social Comparison Processes, Narrative Mapping and their Shaping of the Cancer Experience: A Case Study of an Elite Athlete. Health 16(5): 467-488.
Sparkes, A & Smith, B (2002) Sport, Spinal Cord Injuries, Embodied Masculinities and The Dilemmas of Narrative Identity. Men and Masculinities, 4 (3): 258-285
Sparkes, A & Smith, B (2003) Men, Sport, Spinal Cord Injury and Narrative Time. Qualitative Research, 3 (3): 295-320.
Sparkes, A & Smith, B (2005) When Narratives Matter: Men, Sport, and Spinal Cord Injury. Journal of Medical Humanities, 31: 81-88.
Sparkes, A & Smith, B (2008) Men, Spinal Cord Injury, Memories, and the Narrative Performance of Pain. Disability & Society, 23 (7): 679-690.
Stone, E & Priestly, M (1996) Parasites, Pawns and Partners: Disability Research and the Role of Non-Disabled Researchers, The British Journal of Sociology, 47(4):699-716
Trigger, D; Forsey, M & Meurk, C (2012) “Revelatory moments in fieldwork.” Qualitative Research 12(5): 513–527. DOI: https://doi.org/10.1177/1468794112446049
Wellard, I (2009) Sport, masculinities and the body. London: Routledge.