Disabled children’s childhood studies: critical approaches in a global context

Disabled Children’s Childhood Studies sets out to ‘discuss and develop the future agenda for disabled children’s childhood studies’ (196) within a framework that rejects medical notions of disability and child typical development theory. With a variety of authors and written in short, engaging chapters, this book invites readers to enter the worlds of disabled children and their families from their perspectives.

The book is split into three sections. Part 1: ‘Voices for Creative Theory, Policy and Practice’ offers the experiences of disabled children and their families as they negotiate the complex web of messages about (dis)ability and normalcy and the issues they experience as a consequence. The very real impact of discrimination speaks for itself through the voices of the authors, and we are challenged to really listen to and act upon what we hear.

The Tyrie family share their reflections and relationships within the context of their family and aspirations and hopes for the future, whilst Freja Haraldsdottir discusses the impact of professional medical theorizing about disability and her personal resistance to these messages. Her challenging of these assumptions alongside her experiences of normalizing ‘therapies’ remind us of the importance of seeing the child rather than a disability, creating opportunities for disabled children to be active agents in their lives, with dreams and aspirations, and of the importance of truly listening to the child.

Throughout the book, children’s voices are complemented by the voices of their families who challenge professional attitudes about disabled childhoods, stereotypes held at societal levels and the fight many parents have in dismantling barriers created in their children’s lives. Katherine Runswick-Cole’s chapter on the emotional labour of mothers resonates with Linda Derbyshire’s account of her family’s journey to ensure the inclusion of her daughter Hannah and the conflicts families experience in challenging barriers and assumptions made about disabled children, inviting readers to understand the impact of negativity and prejudice about disability so that all children are supported to achieve their goals.

Part 2: ‘Contemporary Inquiries’ explores the participation of children in disabilities research and some ethical dilemmas relating to this. As a student, this section of the book particularly interested me. David Abbot’s chapter addresses the challenges of undertaking research with children in the family home and the impact of power relations when adults research with children. His experiences in carrying out this work, in negotiating with parents to gain access and gaining the trust of the child and his reflections on the importance of standpoint, methods and on the sharing of intimate and sensitive talk within an ethical context are important points of consideration for anybody wishing to engage with children, not just as researchers.

Sonali Shah unpicks education in the lives of disabled children in differing historical contexts underpinned by changes in education legislation. Disabled people share their childhood experiences of school life over three generations since World War Two. Shah uses personal narratives to unpick social and political changes in the education of disabled children and the consequences of policy and provision. Despite legislative changes, there remains a significant gap between the education of children with disabilities and their non-disabled peers.

Shaun Grech’s chapter explores concepts of disability from a global perspective. Focusing on Guatemala, he explores the meaning of disability within a context of poverty. His reflections on cultural constructions of the meanings of disability and childhood within social and family structures networks show alternative understandings of the social construction and impact of disability within the Global South. He asks that researchers consider alternative concepts of disability beyond those constructed in the western world. Katherine Runswick-Cole concludes this section of the book by asking us to reflect on the emotional performances of mothers of disabled children in different contexts.

Part 3: ‘Contemporary Theories’ looks at the binary constructions of ‘normal’ and ‘abnormal’ and reflects on ways to understand the lives of children with labels of disability beyond these reductionist categories.

Tillie Curran explores the problematizing of disabled childhoods rooted in positivist research methodologies. Using the work of Foucault we are invited to expose practices that contribute to creating problematized research contexts and are asked to resist these through making children’s views visible in research and challenging western attitudes to childhood.

Harriet Cooper also draws on Foucault and on the work of Lennard Davis in exploring constructions of normality and disability through history. We are challenged to rethink of how we look at and understand humanity and the notion of a ‘normal child’. Reflecting on childcare manuals and the British documentary series ‘Born To Be Different’, the dominance of ideologies of normalcy is exposed and the ways in which families work to resist these discourses is explored. Alongside Grech’s chapter, we are asked to think about disability cross-culturally and to recognize the impact of discourses of normality on children and families.

Tsitsi Chatakia and Judy McKenzie explore the theorizing of childhood disability studies within ‘African’ post-colonial ways of being. Like Grech and Cooper, we are reminded that theories of disability generated in the Global North have limited application in other contexts. The lives of disabled children primarily in Zimbabwe and South Africa are explored in the context of ubuntu-collective well-being. The significance of family, poverty and cultural understandings of disability in context are discussed. In closing, the authors consider ubuntu as a concept a useful starting point to begin to develop theories of African Childhood Disability Studies.

Dan Goodley and Rebecca Lawthom explore the reactions of non-disabled people to childhood disability. Stories of the reactions of people to childhood disability are explored from a social psychoanalytic viewpoint, and the chapter includes some suggestions to ‘cure’ problematic attitudes towards disability. Jenny Slater explains the importance of engaging young people in research. She deconstructs the socio-cultural category of ‘youth’ in contrast to ‘adult’ and draws on work by Butler (1993) and McRuer, (2006) in developing ‘critically young methodologies’ that allow young people with disabilities ‘ to be young people’ (185) in a world that often denies them the opportunities to do just that.

Katherine Runswick-Cole’s closing chapter revisits the key messages presented throughout the book and sketches out possibilities for future work in the field of disabled children’s childhood studies.

This powerful book should be essential reading not just for students and researchers. In thinking critically about how and why research is done, and crucially with whom, the writers of this book inspire us to think differently about our approach to researching with children and families labelled with disability. For professionals who work with disabled children and their families, reading Disabled Children’s Childhood Studies may illustrate how a shift in their understandings of and attitude towards childhood and disability brings huge changes in children’s lives.

Joanne Heeney
Sheffield University, Sheffield, UK
[email protected]
© 2014, Joanne Heeney
http://dx.doi.org/10.1080/09687599.2014.905280