Embodied Selves in Transition: Disabled Young Bodies

Lead Research Organisation: Newcastle University
Department Name: Geography Politics and Sociology

Abstract

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Description 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.
Exploitation Route Academic researchers can make use of the research to consider the interrelationship between identity formation, social and medical regulation and embodied practice and resistance in disabled young people's lives. Medical practitioners who care for disabled children and young people can use the findings to consider the consequences of medical approaches to responding to embodied difference.
Sectors Education,Healthcare

URL http://www.ncl.ac.uk/peals/research/project/3921
 
Description The website resource produced within the project is being used in educational contexts to generate debate and discussion about different types of body. This is in part linked to a workshop I participated in at a national conference for learning assistants. Listed here as a form of engagement activity. In addition I am working with children engagement practitioners at the local hospital trust to produce arts materials for children patients to aid them explore their experiences as a patient. In addition, I am now working with Carers Northumberland and Northumberland County Council and other researchers to explore issues around availability of accessible toilets in our region.
Sector Education,Healthcare
Impact Types Societal

 
Description 'Being Active, Staying Healthy' Disabled Young People's Workshop at the European Academy of Childhood Disability 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact 25 disabled young people shared their ideas about the importance of participating in sport, alongside hearing contributions from practitioners and policy makers involved in disability sport. The workshop included 8 disabled young people from Portugal who shared their experiences from their country. A film of the workshop and a summary of the young people's ideas were produced and can be found at the link below.

Young people got the opportunity to share their views and learn from each other.
Year(s) Of Engagement Activity 2013
URL http://www.ncl.ac.uk/peals/influencing/exchange/disabilityandsport.htm
 
Description ESRC Social Science Festival Workshop: Exploring citizenship with young people 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? Yes
Geographic Reach Regional
Primary Audience Schools
Results and Impact Young people from different youth groups who had not met before developed different understandings of each other and their own position in society

Build relationships between the youth groups who now want to work together more. The different youth groups each represent different marginalised groups in the North East. They valued being brought together to recognise similarities and differences in their experiences
Year(s) Of Engagement Activity 2014
 
Description Facilitator and Panel Discussant 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact End of Award conference for a ESRC project, PI Louise Holt. Drawing on my research I facilitated a workshop on research practice with disabled young people and was a panel discussant exploring the ideas emerging from their project.

Identified common research findings across projects, emphasising the need for change in disabled young people's lives and opportunities
Year(s) Of Engagement Activity 2013
 
Description Making Independent Bodies? Disabled Youth, Adult Citizenship and Care 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Presentation exploring the relationships disabled young people make between the work they do on their bodies and aspirations towards independence in adulthood. In doing so we draw upon ideas from within citizenship studies and ethics of care.

This was an invited talk to the Leverhulme International Network Symposium 'Combating Young Disabled People's Worklessness: An International Network'
Year(s) Of Engagement Activity 2013
 
Description Online site to share research findings with young people 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact The website and paper version of it is being used in different education settings, here in the UK and elsewhere. It is being used in the training of school teachers in New Zealand for example. It is also being shared nationally via the ESRC website for social science resources for schools.

It is enabling debate on the significance of ways in which bodies differ for how young people think about themselves and others.
Year(s) Of Engagement Activity 2013,2014
URL http://research.ncl.ac.uk/thebodymatters/
 
Description Unfinished Young Disabled Bodies: Practices and Stories of Body Intervention 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Stories about disability are heavily shaped by the narratives offered by medicine and society. Those narratives enact a distinct body that is constructed as distant from the norm and therefore 'damaged' but also fixable. In this seminar we explore how such narratives, and the practices they encompass, influence the stories disabled young people tell about their bodies and impairment. Drawing on interviews carried out with seventeen disabled young people over two projects, we explore the way medical and societal responses to bodily difference become part of the stories disabled young people tell about their bodies, and influence the way they work with the body as something which remains 'unfinished' and therefore both fixable and flawed. A narrative of an unfinished body is produced, as young people work with the body as something that is integral to their emerging identity, but also as a potential threat that could undermine and give away their labour in making an 'ordinary' functioning body and life.

Contributing to academic debate challenging the dominance of cultural and discursive analyses in work on disability
Year(s) Of Engagement Activity 2013
 
Description Workshop to Learning Support workers 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Schools
Results and Impact Delivered workshop to support workers at the PD Network National Conference. Leicester, July. The workshop looked at ways to use project web resource http://research.ncl.ac.uk/thebodymatters/ within classroom activities
Year(s) Of Engagement Activity 2015