Undeterred by the old adage, judging The Palgrave Handbook of Disabled Children’s Childhood Studies on its wonderful cover artwork by Sara Ryan would not lead potential readers to incorrect expectations of its engaging and diverse contents. The cover image of individually customised cut-out textile figures displaying the ‘JusticeforLB’ call to action – well known to readers interested in disabled children’s childhoods – simultaneously illustrates a celebration of diversity and difference, and a demand for change. In Ryan’s forward, the ‘denial of an imagined future’ (viii) for disabled children is emphasised as a central injustice which the contributors to this book seek to challenge.
The aims of this handbook are based on three principles underpinning disabled children’s childhood studies, first introduced in Disabled Children’s Childhood Studies: Critical Approaches in Global Context (Curran and Runswick-Cole Citation2013). These aims are, firstly, to move beyond deficit-based discourse framing disabled children’s childhoods; secondly, to place children at the centre of research designed with ethics as a paramount concern; and, thirdly, to locate inquiry in contexts that recognise historic, geographical and international realities. The Palgrave Handbook positions Disabled Children’s Childhood studies as a new field with distinct principles (392).
Contributors include academics, practitioners, disabled children and young people and their families, and adults reflecting on their disabled childhoods. Valuable and vibrant personal perspectives are presented alongside robust academic engagements spanning empirical and theoretical research. The overall result is a vivid, overlapping spectrum of contributions, ranging from academic and policy-oriented perspectives through to those rooted in lived experience. This collapsing of traditional boundaries between ‘professionals’ and experts by lived experience delivers a satisfying and credible contribution to the field of disabled children’s childhood studies. The issue of boundaries between practitioners and those who are ‘experts by experience’, a tension expressed throughout the book, is explored directly in a convincing chapter by Tillie Curran, Ruth Sayers and Barry Percy-Smith.
The structure of the book demonstrates a pleasing congruence with the aims outlined in the foreword and introduction. By starting from the lived experiences of disabled children and young people, before developing into areas of ethical, academic and policy concern, this book provides an array of useful and distinct perspectives on disabled children’s childhoods. The contents of the book are separated into six parts, with chapters organised to enable navigation with ease for a variety of readers’ purposes. Part One focuses on sharing experiences and building understandings; Part Two discusses research studies into the lives of disabled children across the globe; Part Three sets out research involving parents of disabled children, young people and adult children; Part Four explores ethics and values; Part Five considers theory and critical ways of thinking; and Part Six discusses changing practice and policy. Of most value to the discerning reader is the inclusion of a brief set of key points before each chapter.
A comprehensive summary of the contents – 37 chapters from 65 contributors – is not possible within the scope of this review. An impressively wide range of issues are discussed: policy and legislation are considered, as are social and institutional contexts such as family life, friendship, school and education, care and support, as well as interactions with medical contexts and psychology.
Of particular value to students, researchers and practitioners engaging with disabled children and young people in any discipline, innovative discussions on ethical considerations are present at various points throughout the book as well as within a dedicated section on ethics and values (Part Four). These salient considerations clearly articulate implications for research and practice. Chapters include perspectives on widening conceptualisations of participation to include embodied communications as explored by Heloise Maconochie (125–139) in the context of very young disabled children. Jill Pluquailec also questions established, purely procedural, notions of consent. Like Maconochie, Pluquailec emphasises the role of embodiment in the reflexive and dynamic process of obtaining – and continuing to check for – consent and assent from participants (220–221).
Liz Thackray’s chapter focuses on ethics and consent relating to anonymity and confidentiality. Thackray’s troubling of the temporal relationship between children and young people’s consent in the present and in the future is particularly relevant in the digital age. Thackray asks us to consider how a child or young person will view research about themselves when they are adults. Without drawing firm conclusions, Thackray’s chapter raises important questions about the temporal assumptions underpinning current ethical practices.
Several valuable chapters from non-western contexts are present, including a noteworthy contribution from an African context. McKenzie and Chataika argue that disabled children cannot be supported effectively when decontextualised from the family and community. Reflecting on contrasting cultural beliefs and family responsibilities regarding disability in Africa, they contextualise the inclusion and care of disabled children with African child development theory and a feminist ethics of care (317).
In ‘Concluding Thoughts and Future Directions’ the editors reflect on the overarching themes explored within the book, and suggest limitations and areas for future attention. They note that the chapters within the book revolve around qualitative approaches and cautiously call for the consideration of future engagement with quantitative methods, specifically highlighting the possible use of ‘big-data’.
One key purpose of the book as stated in the introduction, to ‘provide a global account’, is admirably ambitious, but is only delivered in part, as the editors acknowledge in the book’s concluding chapter. Potential readers should be aware that while valuable insights are shared from Africa, Canada, Aotearoa New Zealand, Australia, Spain and Israel/Palestine, a significant number of contributors and all three editors are based within the United Kingdom. Those seeking accounts from Scandinavia, South America, Eastern Europe or Asia will not find them within this work.
A key strength of The Palgrave Handbook is the assembly of a myriad of diverse contributions which go beyond detailing contemporary challenges for disabled children, as one might expect from a ‘handbook’, and towards the provoking of change through innovative approaches to research, practice and policy. This book would be appealing to researchers, students, and practitioners within disabled children’s childhood studies, disability studies and childhood studies as well as those working in health and social care.
Strathclyde Centre for Disability Research, School of Social and Political Sciences, University of Glasgow, Glasgow, UK
[email protected]
© 2018 Amanda Ptolomey
https://doi.org/10.1080/09687599.2018.1471813
Reference
- Curran, T., and K. Runswick-Cole, eds. 2013. Disabled Children’s Childhood Studies. Critical Approaches in a Global Context. Basingstoke: Palgrave Macmillan.