Embodied Selves in Transition: Disabled Young Bodies

Project Dates: From May 2011 to October 2013
Project Leader: Janice McLaughlin
Staff: Edmund Coleman-Fountain, Allan Colver (Institute of Health and Society) and Patrick Olivier (School of Computer Sciences)
Sponsors: Economic and Social Research Council

Project Aims

To examine what is influential in disabled young people’s exploration, approach to and conceptualisations of embodiment.
To reconsider arguments within the sociology of health and illness regarding embodiment and pain, by studying bodies where disability and pain is the norm rather than the unusual.
To investigate embodied selves seen by others as ‘troubling’, which are changing in ways that are socially and culturally significant as they age.
To consider whether gender is a significant factor in the framing of the disabled young body and self.

Methodology

The project built from a mainly statistical study of participation and quality of life among disabled children: Study of Participation of Children with Cerebral Palsy Living in Europe (SPARCLE). The research returned to a group of young people who, as children, had been part of a small qualitative study within SPRACLE. As this group was small, we invited young people from the project who were not part of that qualitative work to join.
In total, seventeen disabled young people participated: eleven from the original group, two from the wider study and four from a local school for disabled young people. The sample included ten young men and seven young women aged fourteen to twenty who lived in and around the North-East of England. Each participant had a diagnosis of cerebral palsy and all had physical impairments which affected them in varied ways.
Ethics approval for the project was granted by the regional Local Research Ethics Committee of the National Health Service.

The fieldwork involved:
- A narrative interview, focusing on what growing up with a disability meant to the young people and reflecting on key sites and practices of childhood and youth such as family, school and aging.
- The creation of a scrapbook of images by participants that captured disability, the body, pain and identity, with tasks created to encourage the production of images.
- A one-to-one photo-elicitation interview based on the scrapbooks, allowing participants to construct their own visual narratives and to tell stories about those images.
- Two creative workshops, during which jewellery making was used to think symbolically about disability and its meaning.

The research was supported by a research panel of disabled young people who guided research design and analysis.

Key Findings

Impairment and Disability

The young people’s discussions of how their bodies influenced their interactions with others, highlighted how social dynamics turn impairment – a different way a body functions and looks – into a disability – a bodily difference that is significant in a person’s social position in the world – often to their detriment. Those social dynamics are constituted through both body narratives and practices and are open to challenge via the way impairment can be enacted – through doing things in different and creative ways - and framed – through being seen as an important part of someone’s identity - as something valued.

Imperatives to Fix

The participants in their previous and contemporary interviews spoke of the body as one that was involved in ongoing interventions; there was continuity in how medical interventions that occurred in childhood – such as surgeries and physiotherapy – continued into adolescence. However, in adolescence the young people had more say in what medical interventions occurred and also developed their own everyday interventions, which used activities such as walking, or doing things for themselves, as opportunities to maintain body strength and mobility. The focus on interventions across their life course maintained a sense of their bodies as unfinished and likely to require new and further interventions as the ageing process continued to affect the work that needed to be done. In this way impairment was both permanent – always there – and changing – always altering due to factors such as the body ageing or growing.

Transitions

The body work the young people did and showed us was also influenced by their thoughts about the future. They spoke about and used imagery they produced to highlight their desire to be independent, to live on their own, to be like their friends and live ‘ordinary’, normal lives. Work they did to keep mobile, strong, fit, looking normal, was influenced by thinking about the work they had to do to become full adult citizens. The way such transitions were articulated was one aspect of their disabled embodiment that was gendered. For example, the ways in which body strength was worked at, and articulated, and the importance given to being self-reliant in order to have a family, were discussed differently by the young men and women.

Pain

Participants made distinctions between ‘everyday pain’ and pain they linked to their physical impairments. They saw everyday pain – for example, getting tired from walking too far – as something that was part of life and they took pride in their ability to work through such pain. Pain they associated with impairment was something they had to manage that others did not. The pain of everyday life they worked through to show their similarity to others; the pain of impairment was something they framed as a barrier to developing their bodies as they would like and their adult futures

Dissemination

Academic Outputs

McLaughlin, J (2017) The Medical Reshaping of Disabled Bodies as a Response to Stigma and a Route to Normality. Medical Humanities, Online First, http://mh.bmj.com/content/early/2017/02/06/medhum-2016-011065 OPEN ACCESS

Coleman-Fountain, E. (2016) Youthful Stories of Normality and Difference, Sociology, http://journals.sagepub.com/doi/full/10.1177/0038038515618602

McLaughlin, J.; Coleman-Fountain, E. & Clavering, E.C. (2016) Disabled Childhoods: Monitoring Difference and Emerging Identities. London: Routledge. Special series, Advances in Disability Studies

McLaughlin, J. and Coleman-Fountain, E. (2014) The unfinished body: The medical and social reshaping of disabled young bodies. Social Science and Medicine. 120 (November) 76–84 http://dx.doi.org/10.1016/j.socscimed.2014.09.012 OPEN ACCESS

Coleman-Fountain, E. and McLaughlin, J. (2013) The Interactions of Disability and Impairment, Social Theory and Health, 11(2): 133–150, https://link.springer.com/article/10.1057/sth.2012.21/fulltext.html OPEN ACCESS

Conference Organisation

European Academy of Childhood Disability Annual Conference, Sage Gateshead, October 2013 (Janice McLaughlin, member of Organising and Scientific Committee).

‘Being Active, Staying Healthy’ Disabled Young People’s Workshop, Sage Gateshead, October 2013 (Janice McLaughlin, Joint Organiser) (More Information on the Workshop and Public Engagement Materials produced can be found here: http://www.ncl.ac.uk/peals/influencing/exchange/disabilityandsport/#about).

Privileged Embodiments: Securing and Resisting the ‘Valuable’ Body. End of Project Symposium. Programme available online.

Invited Talks

2017

McLaughlin, J. Interdependencies of Care in Families with Disabled Children and their Significance for Citizenship, International Interdisciplinary Symposium, Families, Rights, & Disability: Interdisciplinary, Innsbruck University, June.

2016

McLaughlin, J. The responsibility to build capability in the context of disability, Pluralities of Health Workshop, Tubingen, Germany.

2015

McLaughlin, J. The Medical Reshaping of Disabled Bodies as a Response to Stigma and a Route to Normality, Shame, Stigma and Medicine Symposium, Trinity College Dublin, September

McLaughlin, J. Making the Good Life Via The Medical and Social Reshaping of Disabled Young Bodies’, Reappraising the Good Life Workshop, Gottingen University, February.

2014

Coleman-Fountain, E. and McLaughlin, J. ‘Unfinished Young Disabled Bodies: Practices and Stories of Body Intervention’, College of Education, Otago University, New Zealand, February.

Coleman-Fountain, E. and McLaughlin, J. Unfinished Young Disabled Bodies: Practices and Stories of Body Intervention. UK Childhood Disability Research Network Annual Meeting, Belfast, June.

2013

Coleman-Fountain, E. and McLaughlin, J. ‘Unfinished Young Disabled Bodies: Practices and Stories of Body Intervention’, MRC/CSO Social and Public Health Sciences Unit (SPHSU), Glasgow University, November.

Coleman-Fountain, E. and McLaughlin, J. ‘Making Independent Bodies? Disabled Youth, Adult Citizenship and Care’, Leverhulme International Network Symposium ‘Combating Young Disabled People's Worklessness: An International Network’, September, Durham.

Coleman-Fountain, E. and McLaughlin, J. 'Re-Shaping Young Disabled Bodies: Exploring the implications of and reasons for different forms of medical and self-intervention,' Privileged Embodiments: Securing and Resisting the ‘Valuable’ Body’, PEALS International Spring Symposium, March, Newcastle.

2012

McLaughlin, J. ‘Reflections on consenting processes in social research with young people’, Medical Practitioners, Adolescents and Informed Consent Nuffield Seminar. Leeds University, July.

Conference Presentations

2017

Coleman-Fountain, E. Narrative and Counter Narrative in Research with Disabled Young People, Researching youth in troubling times: Mess, method and ethical puzzles, BSA Youth studies Event, Leeds.

McLaughlin, J. Valuing care in an era of celebrating independence: disabled young people’s reflections on the Importance of care to them, NNDR Conference, Orebro, Sweden.

2016

McLaughlin, J. The Embodied and Relational Citizenship of Disabled Young People, Youth Matters: Moving from the Margins, Newcastle.

McLaughlin, J. and Coleman-Fountain, E. Embodied Independent Citizenship in the Context of Disability, BSA Annual Conference, Birmingham, April

2015

McLaughlin, J., Coleman-Fountain, E., Durrant, A., Wallace, J. Creative and embodied practice in research examining disabled young people’s narratives of embodiment, Creative Research Methods in the Social Sciences Conference, Social Research Association, May, London.

McLaughlin, J. and Coleman-Fountain, E. Embodied Independent Citizenship in the Context of Disability, BSA MedSoc Conference, York, September.

2014

McLaughlin, J. and Coleman-Fountain, E., Durrant, A. Wallace, J. Creative and embodied practice in research examining disabled young people’s narratives of embodiment, Visual Insights Conference, Newcastle, June.

2013

McLaughlin, J. and Coleman-Fountain, E. On the Meaning of Pain: Adolescence, disability and difference, European Academy of Childhood Disability Conference, Sage, Gateshead, October.

McLaughlin, J. and Coleman-Fountain, E. Being Looked At: Disabled Youth, Photography, and Images of Bodily Difference. The Public Image, The International Association of Visual Sociology Conference, Goldsmith University, London, July.

Coleman-Fountain, E. and McLaughlin, J. Re-Shaping Young Disabled Bodies: Exploring the implications of and reasons for different forms of medical and self-intervention’, Practices and their Bodies. What Kind of Artefact is the Lived Body’ Conference, Research Center of Social and Cultural Studies, University of Mainz, April.

Coleman-Fountain, E. and McLaughlin, J. Re-Shaping Young Disabled Bodies: Exploring the implications of and reasons for different forms of medical and self-intervention’ Nordic Network on Disability Research Conference, Turku, Finland, May.

Coleman-Fountain, E. and McLaughlin, 'Doing and Being Seen: Disabled Young Bodies, Photography and Narrative Identity', Nordic Network on Disability Research Conference, Turku, Finland, May.

Project Public Engagement Materials and Activities

McLaughlin, J. (2016) Why some disabled people are critical of the Paralympics, The Conversation, http://theconversation.com/why-some-disabled-people-are-critical-of-the-paralympics-65190
McLaughlin, J. (2015) Young, Gifted and Excluded: Are young people citizens? Café Scientifique Talk, Newcastle, January.
McLaughlin, J. (2014) ‘What Does Citizenship Mean to Young People’, ESRC Social Science Festival November, Newcastle.
McLaughlin, J. and Coleman-Fountain, E. (2013) The Body Matters: Exploring disability and the body with disabled young people. Newcastle University. Web Version Available Here
McLaughlin, J. (2015) Workshop exploring classroom uses of http://research.ncl.ac.uk/thebodymatters/ at the PD Network (organisation for disability support workers in schools) National Meeting, Leicester, July.
Coleman-Fountain, E., McLaughlin, J. & Wallace, J. (2012) The Body Matters Project Creative Workshop Summary.