From May 2011 to October 2013
Project Leader(s): 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
Physically disabled young people often experience pain; in addition their bodies are also undergoing changes associated with adolescence. We do not know much about what this is like for young people and how their disability interacts with their changing body and what this means for them.
Adolescence is a period that is surrounded by social and cultural expectations, influenced by notions of normality. Disability complicates such expectations as those around disabled young people often make assumptions about how 'normal' the young person can be. The disabled young person may not necessarily agree with such expectations and views, but nevertheless they have to live with and deal with such expectations, alongside other factors that influence adolescence such as gender and sexuality. At the same time as such changes are occurring they are also living with some aspects of their bodies which are not changing, in particular their impaired body and the pain associated with it.
There is some research in sociology on disabled bodies and pain, but for the most part it focuses on adults who had 'normal' bodies until they were 'transformed' by an accident or illness. Such research focuses on what it is like for an adult with a 'normal' life to have to get used to a disabled body which experiences pain. While important, such work does not allow us to understand what it is like to be a young person and to have always been physically disabled and in pain. This is what our research project aims to consider: what is it like to be disabled and live with pain, as you move towards adulthood?
A group of young people with cerebral palsy in northern England participated in qualitative research examining their quality of life five years ago. Our project will return to this group of young people to explore their lives at this key stage in their development and social lives. One benefit of working with a group of young people who have been involved in research before is that we can compare their responses in the previous study and this one and consider change over time. The young people were first approached through a larger European project comparing quantitative data from children with cerebral palsy across Europe. One of the co-investigators, Professor Colver, was the lead for that study and has the agreement of the young people to contact them again about future research projects.
The fieldwork with the young people will be undertaken by Research Associate Edmund Coleman-Fountain. He will have additional training to ensure that a person with cerebral palsy with communication, hearing, vision or movement difficulties can participate fully in the project. A number of activities will be undertaken:
The research will be supported by a research panel of disabled young people (not involved in the study) who will guide research design and analysis.
The project has now formally come to a close in terms of funding, but dissemination from the project is ongoing. Recently the project had a high profile at the European Academy of Childhood Disability (EACD) annual conference where we presented a paper on pain, ran an instructional course on the social and ethical issues around involving disabled children in research and held a workshop with disabled children on sport. More information on our work at EACD can be found in the recent news item on the PEALS website.
We have also now produced a summary of the project findings, aimed at young people and organisations that work with them. We hope people can use the report to generate discussion around disability and change public perceptions. You can download the report (PDF 2MB) or you can request a paper copy by email: firstname.lastname@example.org
Also on dissemination our paper in Social Theory and Health is now freely available without the need for university library access.
Since the last update the research has moved forward a great deal. Fieldwork is complete and the team is currently in the process of analysing the data and carrying out dissemination activities. In total 17 young people were involved in the research, all of whom took part in an initial interview that elicited their accounts of growing up with a disability. Following the first round of interviews Edmund worked with the young people on photography, and had participants compile scrapbooks that conveyed what disability meant to them through a combination of image and text. The work that was produced was highly complex. A second round of photo-elicitation interviews engaged with the images so that the young people could tell stories around them.
Finally, a creative practice workshop in October 2012 with Jayne Wallace drew together a small group of participants who worked on producing pieces of jewellery that explored their experiences of being young and disabled.
Having brought the data together, material is now being prepared for dissemination. The first set of interviews has been transcribed and coded, and the second set, also transcribed, is being looked at. The aim is to use the data to explore the various narratives the participants were telling about disability, through words and images, and to feed that into the public realm. In order to do this, the team is planning to return to the original research panel (a group of disabled young people drawn from the local community) that they worked with at the start of the research. The intention is to have two workshops feeding back the research findings in an accessible manner, and developing a way in which findings can be prepared in a way that is interesting and accessible for other young people. The team hopes to produce a report out of these workshops to be used by disabled young people, their parents and interested practitioners.
In addition the team is engaged in other dissemination activities, and findings have been presented at national and international conferences, including the 2012 British Sociological Association Medical Sociology Conference in Leicester and the 2012 European Association of Social Anthropologists Biannual Conference in Paris. Papers coming up are the Nordic Network on Disability Research in Turku, Finland and the Mainz Research Centre of Social and Cultural Studies Symposium ‘Practices and their Bodies’. In March the PEALS Annual Symposium entitled ‘Privileged Embodiments: Securing and Resisting the ‘Valuable’ Body’ was held. It was developed out of the study to engage further with the theme of embodiment. Speakers from around Europe delivered papers, and findings from the project were also disseminated. Professor McLaughlin is on the organising panel for the 2013 European Academy of Childhood Disability Conference to be held in Gateshead in October. A young person’s event on youth, sport and disability will respond to some of the issues explored in the project.The team is currently working on a paper to be submitted to Body and Society, and had a paper entitled the ‘Interactions of Disability and Impairment’ published in Social Theory and Health in April 2013.
During the first year of the project Janice and Edmund have moved from the early planning stages, which included running two preparatory workshops with young people with disabilities, and have been hard at work with the fieldwork, working alongside Allan Colver and Patrick Olivier and the team in SiDE. Twelve of the initial twenty interviews have been carried out, and the photography and online work is underway. Whilst the original sampling procedure has proved successful, the team are looking to move beyond the SPARCLE database to include young people attending local schools catering for those with additional needs. Janice and Edmund are also currently working with Jayne Wallace to set up the creative workshops due to go ahead in August. Those workshops will lead on to a second round of interviews that will explore issues around photography, representation and embodiment.
In addition to the fieldwork and early planning, Janice and Edmund have co-authored a conceptual paper which has been submitted to the Journal of Social Theory and Health. Two advisory group meetings have been held, which has provided a lot of constructive feedback. A third meeting is currently planned for October.
As the team move forward with the fieldwork, attention is being paid to the final stages of the project, and a draft outline for a symposium on embodiment to be held at Newcastle University is being put together. In the meantime analysis of the first round of interviews has begun and a number of conference papers are in preparation.