Embodied selves in transition: Disabled young bodies

Professor Janice McLaughlin

The project aimed to examine what is influential in disabled young people’s exploration, approach to and conceptualisations of embodiment. We sought to investigate embodied selves seen by others as ‘troubling’, which are changing in ways that are socially and culturally significant as they age. This included a consideration of whether gender is a significant factor in the framing of the disabled young body and self. Qualitative methods were used that included narrative interviews, participant scrapbooks, one-to-one photo-elicitation interview and creative workshops. Alongside publications and conference papers, the data from the young people was used to create an online resource for public engagement. The research design and analysis was influenced by a research panel of disabled young people.

Ethical issues

Given our research involved disabled young people, ethics was a key consideration. We also felt that approaches that assume that disabled young people are inherently vulnerable are also problematic. This produced an approach to ethics which focused on ensuring important safeguards, but also that built space to recognise the potential for participants to exercise agency by making their own choices. 

Our primary recruitment route was via the NHS and the research required NHS ethics review. Despite the reputation of NHS committees as having somewhat formulaic approaches to ethics processes we found across a number of projects that if we justify why we do things differently from the norm and display the care we are taking over such matters approval can be obtained. What was a more time consuming process was working through the NHS research governance processes, for example, a medical consultant is required as ‘PI’ within their procedures. Although we had a medical consultant as part of our team, the assumption that it is required and is an important safeguard is significantly problematic for social science research. 

Acquiring ethics approval is only the first step in developing good ethical practice. We considered the ethical aspects of the project at each stage and as unexpected issues emerged. We acquired written consent from participants and consent from both parents and the young person for those aged under 16. We met with the participants to discuss the research, participation and the possibility of withdrawal, before the research commenced. Participants could choose whether their parents would be present at the meeting and interviews. Once the research was completed and before preparing the interviews for submission to UKDS we confirmed participants were happy for the material to be submitted.

Participants did not have to sign up to all activities of the research project but could choose where and how they participated. Through the use of journals, in preference to sharing securely online, participants shared their images and reflections.

Participants were given guidance and advice on issues to consider when taking photographs. We only used photographs that we had clear consent to use (opt in rather than opt out approach) and continued to think carefully when using an image and whether is appropriate for the context of its use. For the online resource, developed to share the participants’ perspective for non-academic audiences, we have used drawings of the images in a way that still conveyed their meaning.

Lessons

  • Engage with ethics committee approaches, including the NHS. Qualitative social researchers can have a perception that this is a significant hurdle that is unresponsive to qualitative approaches and a major barrier to undertaking research with particular groups (including children) in different and distinctive ways. Don’t use NHS processes as a reason not to attempt to do research with particular groups. Make the case for why the research is important and valid and why any differences in practices associated with norms around consent or anonymity are appropriate. 
  • If working in health contexts give sufficient time to work through research governance processes. 
  • Create space within the research process for participants to understand fully what the research involves and work to build the trust needed for them to feel they can ask questions, say no and consider which aspects of the research they wish to participate in and how.