Seen and Heard: Exploring Participation, Engagement and Voice for Children with Disabilities

Abstract

This is a book that brings together the perspectives and insights of a wide range of researchers to examine and question the ways in which children with disabilities can be meaningfully involved in research. The two editors, Miriam Twomey and Clare Carroll, look to the standards set out in the United Nations Conventions on the Rights of the Child (1989) as a basis with which to ground their approach: an acknowledgement of the child as an autonomous, (dis)abled being with the potential to make valid and valuable contributions in all aspects of life. They challenge a homogenous notion of voice and instead explore its complexity through a broad collection of intersecting work that spans theory, ethics and methods and features a number of innovative studies. Divided into three parts, the book begins with a focus on legislation, policy and theories. We are introduced to human rights as a way of considering and developing research with children with disabilities and shown how this can be effective at both national and international levels. The arguments are effective at bringing to light the empowered position of researchers — as we bring our own cultural and societal perspectives to ideas of inclusivity — with some innovative practical responses such as Karen Watson's ‘researching among children’ (Watson, 2018, pp. 81–101). A study exploring the stories of children with disabilities in a post-colonial context is particularly welcome as it shows much needed developments in the ways researchers are including intersectionality in the development of disability research (Hall, 2014). Voice is confronted head on in the book's second part with some challenges to how we understand and listen to children with disabilities. A salient chapter by Simmons (2018, pp. 125–144) offers a clearly written phenomenological methodology for exploring the social experience of people with profound learning disabilities — some of the most excluded from qualitative research (Mietola, Miettinen, and Vehmas, 2017) — and would prove useful for both researchers and practitioners working in this field. A further phenomenology study (Twomey, 2018, pp. 145–170) exploring classroom engagement for a young autistic child does, however, present problems. Here, the child is presented as disordered without the ability to understand the mind-set or actions of others. The chapter may have benefited from discussing the intersubjective nature of empathy between non-autistic and autistic people — as explored in critical autism studies (Chown, 2014; Milton, 2012) — as this may have offered a more appropriate way to consider the child and their experiences. This disordered view of autism was unfortunate to read in a book that so articulately argues for new ways in which to think about disability and those that experience it. The book concludes by exploring voice in the context of health and social care professions and once again asks us to confront our understanding of inclusion from the perspective of children with disabilities. For instance, current ‘accessible’ playgrounds are shown to prevent children with physical disabilities from experiencing sociality as their peers do and therefore require a universal design approach to provide real inclusion (Prellwitz and Lynch, 2018, pp. 267–295). It is chapters such as this that make this book a valuable resource for any researcher or practitioner who have an interest in developing ways of working that respond to the day to day reality of disability for children or, indeed, adults. On the whole, the discussions are thoughtful and well-argued and demonstrate that, while notions of inclusion and voice demand scrutiny and innovation, children with disabilities are enablers of effective and practical research.