By Anna Purkiss, Faculty of Education, University of Cambridge
For my PhD, I am exploring the responses of a group of eight 12- and 13-year olds to the representation of disability in contemporary children’s fiction. I am particularly interested in how both their individual lived experiences of disability and the features of the texts themselves shape these responses. The catalyst for this doctoral project was the realisation that there was very little research within the growing field of disability in children’s literature that asked for children’s views of such texts and only one project so far had begun to consider the views of disabled children. To me, this seemed to be a fundamental gap in the research: I firmly believe that disabled children should be asked for their views on the representation of their own lived experience, on which they are the experts, in line with Article 12 of the United Nation’s Convention on the Rights of the Child (1989). Indeed, this could carry particular significance in a publishing landscape where, although the number of disabled characters in children’s books has dramatically increased over the past fifteen years, many of these representations are problematic.
As my participants’ views were of such importance to me, I began to look into inclusive research as a possible approach, which ended up being the foundation of my project. Simply explained, inclusive research works to balance the unequal power dynamics found in the majority of empirical research with vulnerable participants, moving away ‘from research onparticipants to research with them’ (Nind, 2017, p.278, original emphasis). First developed by Jan Walmsley and Kelley Johnson in 2003 for use in learning disability research, this approach draws on values and elements that underpin the more well-known participatory research and emancipatory research. The more I read about inclusive research, the more I realised the importance of my project being inclusive. All children are subject to adult/child power imbalances, but disabled children experience additional layers of this. I would therefore argue that inclusive research has particular importance when working with this group, especially as this approach is a highly ethical stance, given its focus on the views, rights and agency of vulnerable participants.
Along with this underlying approach of inclusive research, my interdisciplinary project also draws on disability studies (including literary disability studies) and children’s literature (including reader response theory and cognitive poetics) in a multiple case study analysis. As I have recently completed my fieldwork and am moving onto analysis and writing up, now is a good opportunity to reflect on how inclusive research can be seen in my project.
Child consent has been as important as adult permission
For both my initial study last summer and the start of the main fieldwork earlier this year, I explained the project and how I would be using the data and findings both in person and through information sheets and letters to facilitate informed consent. At both stages, the consent form was signed by the child and their parent or guardian. I also made it clear that participants had control over their continued participation in the project: they could leave the project at any time – indeed, three participants from the initial study chose not to continue to the main fieldwork – and I checked that they were happy to continue at the start of each fieldwork session.
Participant involvement in the research design
One of the key purposes of the initial study last year was to seek my participants’ involvement in the research design. In one of the sessions, I explained my preliminary ideas for the main fieldwork and then we had small and wider group discussions. They all liked my basic research design (setting up a book club, with group sessions interspersed with individual conversations, and keeping reading diaries) and also contributed ideas of their own, such as ways in which to run the book club discussions, individual ways of keeping their reading diaries and possibly interviewing someone with a disability themselves. This was a valuable step in giving them ownership of the project and showing them that their ideas and opinions are respected. This continued in the main fieldwork with a ‘project meeting’ at the end of each book club session where they could propose and discuss any changes or new ideas.
After the initial study, I returned to the school to carry out member checking. I checked that they were happy with the way in which I had understood and represented them and their experiences and they suggested changes. I also confirmed that they were happy with the updated research design. I will member check with my participants again once I have my findings from the main fieldwork and during the process of writing up. I have also checked that they are happy with how I have represented them in this blog post.
My participants have made important decisions that have the potential to significantly affect the outcome of the research. Over the course of the project, we read three contemporary children’s books with disabled protagonists. I whittled down my wide primary reading to a shortlist of ten books, all with disabled protagonists and covering a variety of genres of book and types of disability. We had a text selection session where my participants were given time to explore all the books, discuss with each other and then vote for their top three. These votes were compiled to produce an overall top three: El Deafoby Cece Bell (2014), The War That Saved My Lifeby Kimberly Brubaker Bradley (2015) and The London Eye Mysteryby Siobhan Dowd (2007). The children also chose how – or whether – to keep their reading diaries, with choices made including a lined notebook, sketchbook and art materials, and using an iPad. Moving forward, I will also discuss with them how best to share the research and my findings.
Shortlist of books
Materials used for the reading diaries
All of this helped to balance the power dynamic between researcher and participant. For example, the way in which their views, opinions and ideas were valued and respected helped to build a definite rapport, both between myself and each child, and within the group as a whole. Indeed, in later book clubs, there was a shift from me asking questions to the participants leading the discussion. Their ownership of the project through their continued involvement in the research design could be seen in their ongoing enthusiasm and commitment to the research.
Nind, M. (2017). The Practical Wisdom of Inclusive Research. Qualitative Research, 17 (3), 278-288.https://doi.org/10.1177/1468794117708123
Walmsley, J. and Johnson, K. (2003) Inclusive Research with People with Learning Disabilities: Past, Present and Futures.London: Jessica Kingsley.
Anna Purkiss is a third-year PhD candidate at the Centre for Research in Children’s Literature at Cambridge (CRCLC) and the Cambridge Network for Disability and Education Research (CaNDER), both based at the Faculty of Education. Her research on young readers’ responses to the representation of disability in contemporary children’s fiction is supervised by Maria Nikolajeva and Kristine Black-Hawkins. A former primary school teacher, Anna is also the Chair of FERSA.