There has been significant progress of disabled children’s rights and citizenship in recent decades, but there are ongoing challenges to redress the persistent marginalisation and exclusion that disabled children experience. In this context, Valuing Disabled Children and Young People, edited by Kelly and Byrne, which is based on 12 empirical research papers, focuses on three parts to discuss contemporary childhood disability issues across various contexts: social justice and inclusion, participation and research in practice, and voice and identity.
The first part reflects disabled children’s rights through a social justice and inclusion lens. The opening chapter of the first part in Stalker et al.’s paper examines the impact of austerity on the availability and accessibility of public-funded service for disabled children and their families in Scotland. Stalker et al. find serious reductions in the quantity and quality of services resulting in lack of access or lengthy waiting times for support to meet identified needs of disabled children. The findings point to a real danger that disabled children’s rights under national legislation and international conventions are being eroded (12). Furthermore, Wood’s paper examines theoretical concepts of care in a Canadian Early Childhood Education and Care programme, and argues the notion of care as a right and an ethic of care as a viable tool to broaden the concept of care by recognising the reality of mutual interdependency through effective inclusion in the Early Childhood Education and Care context.
Irvine’s paper discusses promoting inclusion for disabled children in post-conflict societies. Irvine argues that developing a plan and process for inclusive education for ‘all’ children should consider specific local contexts and should be started at the earliest stages of post-conflict reconstruction, because ‘spending on any education system should be viewed as a long-term investment in citizenship development that will contribute to a more peaceful society’ (25). Davis et al.’s paper on the ‘Facilitating Inclusive Education and Supporting the Transition Agenda (FIESTA) Project’ examines concepts of inclusion and transition of disabled children in mainstream schools. Davis et al. argue that inclusion is more equitable when disabled children, parents and professionals work collaboratively to construct the process of transition.
The second part explores the positioning of disabled children as active agents in research, policy and practice. Using a case study, Simmons and Watson’s paper addresses exclusion of children with profound and multiple learning disabilities in research and explores participatory approaches for the co-construction of knowledge of disabled children (68). Simmons and Watson argue that participatory approaches allow for alternative forms of expression of disabled children and provide a more nuanced and rich understanding of children’s abilities and experience across different contexts. Underwood et al. also investigate young disabled children’s perspectives on their capabilities while examining the efficacy of different interview techniques to engage young disabled children in research. Underwood et al. conclude that young disabled children can participate in research and present information about their own capabilities (85). Furthermore, McNeilly et al. examine disabled children and their parents’ experiences of participation in the decision-making process. While McNeilly et al. find that disabled children face additional barriers to their participation, they suggest that disabled children are afforded the recognition they deserve and are drawn into decision-making processes in their interaction with professionals but this will only happen if parents and professionals actively encourage participatory practices (105). The second part concludes with Murray’s reflection on progress with the participatory project ‘the Barnardo’s Participation Project’ in Northern Ireland. Murray identifies that disabled children are skilled in recognising differences between tokenistic consultation and meaningful participation. So, Murray concludes that the core of real participation must be grounded in a commitment to developing reciprocal relationships, sharing participatory experience and knowledge, and responding to the changing participatory contexts (122).
The last part looks at the heterogeneous identities and voices of disabled children. The opening chapter of this part by Mutua and Swadener explores how these young people with profound learning disabilities understand themselves in relation to gender and sexuality. This study highlights that disabled young people articulate many characteristics of the transition process, despite the fear of parents and the oppressive silences and barriers put forth by an ablest society (139). Abbott and Carpenter’s paper, based on a study of young people with Duchenne muscular dystrophy, also highlights the importance of discovering the views of disabled children on their own understanding of the meaning of impairment and illness. Abbot and Carpenter emphasise the need to develop theoretical models of disability to allow for further consideration of the combination of disabled children’s experiences of bodily impairment and the psycho-emotional dimensions of exclusion (151). Goddard’s paper also argues that existing theoretical models of disability do not take into consideration the need that young artists with learning disabilities have for non-disabled facilitators (169). So, there is a need for a more fluid interpretation of impairment and disability that considers a wide range of models. The last section concludes with a chapter written collaboratively with disabled young people from the eXtreme group in the North East of England on the experiences of participatory research and the development of transitions services. Rome et al. emphasise the importance of creating an appropriate space for disabled young people to initiate and conduct their own research in ways that are manageable and meaningful to them (175). Rome et al. highlights that ‘disabled children and young people have a valuable, insightful and important contribution to make. …. it is the responsibility of adults to find ways of understand disabled young people’s views rather than disabled young people trying to make themselves heard’ (178).
To conclude, disabled childhood studies still remains an under-theorised area. Valuing Disabled Childhood marks a contribution to create a bridge between childhood/youth studies and disability studies and to find diverse methodological approaches to hear disabled children’s voices. Valuing Disabled Childhood also provides us a useful consideration on the social position of disabled children to develop childhood disability theory and to enhance policy and practice to meet the ‘holistic’ needs of disabled children.
Disability Studies, Northumbria University, Newcastle Upon Tyne, UK
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© 2018 Se Kwang Hwang
https://doi.org/10.1080/09687599.2018.1443588