Purpose, process and future direction of disability research

Purpose, Process and Future Direction of Disability Research is from the series ‘Studies in Inclusive Education’ (edited by Roger Slee) and came about from a network of early career female researchers who were conducting disability research across different European countries. The book is a refreshing addition to a growing body of publications on disability, inclusive education and the process of doctoral study, and offers the reader an insight into how these researchers explored complex ideas, theoretical approaches, professional understandings and personal experiences of disability in order to conduct their own investigations. The result is an engaging, disarmingly honest and highly readable book.

Each chapter has been contributed by a different early career researcher and reflects specifically on the process of their doctoral research at the time. Rather than reporting findings, the format was to outline the research project, reflect on the process of studying and researching disability, identify the principles underpinning their work, and explain the methodological decisions made. Each chapter ends with questions identifying unfinished business in the respective research areas. All of the contributors reflect on their personal and professional positions, for example as a non-disabled primary teacher in the case of Simoni Symeonidou, a visually impaired researcher (Karen Beauchamp-Pryor), or as a social worker with myalgic encephalomyelitis in the case of Carmel Kelly. The authors also explain the impetus and motivation for their particular research and are influenced by the injustices they have personally experienced or witnessed in the education or care systems, the lack of policy manifestation of the human rights approaches to disability or the absence of a truly inclusive model of education in their respective research countries. All pay homage to the profound, and sometimes life-changing, influence of the social model of disability in their thinking.

The range of issues explored is broad, including such areas as emancipatory research, ethics, policy, voice, research integrity, citizenship and the ‘messiness’ of research, and here I can comment on just a few. For example, Reichart, in her work on disability equality and citizenship education, questioned her own assumptions about voice and disability. In searching for the ‘authentic nature of disability equality’ by listening to the voices of disabled people, she found that she had to embrace the diversity and polyphony of the competing, discordant and sometimes contradictory voices that she heard. The approaches developed during her research, including her ‘mash-up methodology’ and ‘personal-political zoom’, are potentially helpful tools with which to examine rights-based and needs-based theories of disability.

Kelly, on the other hand, wrestled with the ethical issues surrounding the partial disclosure of her research aims when carrying out ethnographic research. Although this did not sit comfortably, she doubted whether she would have gained access to do the research had she been completely transparent and the ethnographic approach would have been compromised. Such debates and personal reflections are at the heart of ensuring that we continually question and challenge our own notions of what constitutes ethical research. Kelly was clearly conscious of her responsibilities in relation to safeguarding, confidentiality and consent. Other authors, including d’Alessio and Beauchamp-Pryor, discuss the emancipatory nature of disability research and critically examine to what extent they have been able to truly do justice to this whilst being especially mindful of their positionality (in some cases) as non-disabled researchers.

The way in which these researchers tell their stories by linking their personal experiences and professional lives to their research entices the reader into their journeys. For example, Beauchamp-Pryor recounts her experience as a child with visual impairment growing up in the education system and how those positive and negative experiences affected and informed her approach to research. How was it that in early childhood she could go from being treated like any other child to ultimately, in higher education, launching a formal complaint about discrimination? This prompted her to research into factors that contributed to the exclusion or inclusion of disabled students in higher education.

I was struck by the honesty and integrity that shone through most of the writing in this book. In particular, how these authors critically examined their own contribution to research with a certain humility despite the lofty ambitions many of us harbour in carrying out research and genuinely wanting to make a difference to the lives of disabled people. Such honesty is found in Simeonidou’s account of growing up with medical and charity model sympathies in an unconscious and uncritical way. As a teenager she volunteered, helped out children ‘in need’ and concurred with the personal tragedy view of disability but explains how her views were challenged and changed over time by discovering the social model of disability. Spandagou humbly refers to her research as not having ‘much of an impact’ and, to some extent, regrets not having published from it (at the time) in terms of not doing justice to her participants. Equally she is able to talk about the messiness of research, and her disappointment is palpable when she explains how she was unable to carry out two comparative ethnographic studies in two different countries.

The theoretical link between all of these stories is a discussion of the social model of disability, and whilst some reference wider contextual influences including Foucault, feminist disability studies and postmodern theorists, these are often not explored in detail or the social model really challenged. This is one area that I found lacking and which detracted from an otherwise comprehensive exploration of doing disability research. For example, it would have been refreshing to contest, refute or concur with critiques of the social model offered by Shakespeare (2006) or the Nordic scholars on relational models.

Purpose, Process and Future Direction of Disability Research is certainly a book I would recommend to those studying disability research at a postgraduate level and especially for those engaged in doctoral study. It gives permission to be honest in our reflections and on the process of research, and thus paves the way to encourage more people into carrying out meaningful, respectful and hopefully life-changing research.

Jacqui Shepherd
School of Education and Social Work, University of Sussex, UK
[email protected]
© 2016 Jacqui Shepherd
http://dx.doi.org/10.1080/10.1080/09687599.2016.1141576