Berit Berg

Perspectives on Childhood and Disability

Historically, studies on disabled children have been characterized by narrow and limited ways of looking at their lives. Some historians have even characterized the study of childhood and disability as ‘a legacy of neglect’ (Safford & Safford, 1996, p. 1). When researchers have included disabled children they have typically been preoccupied with impairment, vulnerability, service use and the ‘burden’ of presumed dependency, at the expense of a more nuanced account of their everyday lives and identities (Avery, 1999; Davis, 2004; Shakespeare & Watson, 1998). The voices of the children themselves have frequently been excluded and research has, instead, highlighted the perspectives of parents and professionals. The result is that, until relatively recently, the lives of disabled children and youth have largely been seen through the eyes of adults. Over the past decades, however, there has been a notable increase in research that includes the views and perspectives of disabled children and youth, providing new insights and understandings of their lives and experiences (Asbjornslett et al., 2013; Connors & Stalker, 2003; Egilson, 2014; Egilson & Hemmingsson, 2009; Einarsdottir, 2007; Stalker, 2012; Watson et al., 1999; Ytterhus, 2012). This development has coincided with and been inspired by new approaches to the social studies of childhood (James & Prout, 1997), the emphasis on social and cultural understanding of disability within disability studies (Shakespeare, 2013) and a growing human rights perspective with regard to both children and disabled people.

Introduction: Disabled Children and Youth in the Nordic Countries

This book grew out of the Nordic Centre of Excellence: REASSESS, Reassessing the Nordic Welfare Model.1 Over a period of five years (2007–2012) leading researchers from all the Nordic countries worked together in ten research strands with the aim of investigating and critically analysing whether the Nordic welfare model has the ability to renew itself under changing external conditions. One of the strands in REASSESS focused on disability. Within this strand, a group of Nordic researchers met and discussed ideas and experiences with the overall aim of identifying, sharing and developing research about the lives of disabled children and youth and their families. This book is the result of that collaboration. It provides comprehensive research-based information about the current knowledge regarding disabled children and youth in the Nordic countries. The approach adopted in the book seeks to understand the experiences of the children from their own perspectives. We regard children as a social group, whose experiences are structured by the wider society and culture and whose behaviours are controlled and directed by adults through policies and practices, such as state interventions in welfare, health and education. Although disabled children’s experiences are the primary focus we also recognise the importance of their families and other caregivers, both as the context in which the children live and as providing important information about their conditions and experiences, particularly when children are unable to articulate their own views.