Childhood and Disability in the Nordic Countries

Being, Becoming, Belonging

R. Traustadóttir, B. Ytterhus, S. Egilson, B. Berg, R. Traustadóttir, B. Ytterhus, S. Egilson, B. Berg

• Publisher: Palgrave Macmillan
• Year: 2015
• ISBN:
  9781137032645
• Topic: Social Sciences
• Subtopic: Marriage & Family Sociology
• Index: Social Sciences

This collection provides a comprehensive insight into disabled children and youth in Nordic countries. It seeks to understand the experiences of children from their own perspectives and takes a multidisciplinary approach grounded in the new social studies of childhood and the Nordic relational approach to disability.

Part I

Theories and History

1

Perspectives on Childhood and Disability

Borgunn Ytterhus, Snæfrídur Thóra Egilson, Rannveig Traustadóttir and Berit Berg

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 (Asbjørnslett et al., 2013; Connors & Stalker, 2003; Egilson, 2014; Egilson & Hemmingsson, 2009; Einarsdóttir, 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. The research presented in this book is informed by these theoretical perspectives and also contributes to the growing scholarship on children and childhood by intersecting disability studies and childhood studies in exploring the lives of disabled children and youth.

Theoretical and conceptual underpinnings

The research on disabled children and youth in the Nordic countries presented in this book is conducted within diverse disciplines, uses various methods and addresses different aspects influencing the lives of children and youth. Despite this variety the research is united by three major theoretical approaches reflected in the different chapters of the book. These perspectives are the social studies of childhood (Corsaro, 1997; James et al., 1998; Qvortrup, 1994); disability studies with a social perspective on disability, in particular the Nordic relational approach (Goodley, 2011; Gustavsson et al., 2005; Shakespeare, 2013); and the human rights perspective reflected in treaties such as the UN Convention on the Rights of the Child, UNCRD (United Nations, 1989), and the UN Convention on the Rights of Persons with Disabilities, UNCRPD (United Nations, 2007).

Social studies of children and childhood

The extent to which children and childhood have been defined as distinct phenomena has varied through time and space (Ariès, 1962). Historically, families needed children for their survival and children were looked upon as a ‘benefit’ for the family (Jensen, 2003). Children contributed with their labour which in agriculture-based societies as well as in early industrial countries required strong bodies. Thus being ‘able-bodied’ was of great importance. In the nineteenth century the new discipline of psychology developed a perspective on human beings increasingly in terms of intellectual, emotional and ethical measures and definitions. The influential works of Piaget (1953) dominated the understanding of child development in the second half of the twentieth century. In his account children developed according to a series of predetermined stages that led to the achievement of logical and rational competence, which were seen as the markers of adulthood. Development theories have been, and still are, influential in terms of understanding ‘normal’ child development due to their emphasis on the child’s inherent ‘normal’ learning potential and ‘normal’ capacity (Eriksson, 1950/1969; Piaget, 1953). By viewing childhood as a sequence of measurable stages towards adulthood, classical child development theories established a rigorous definitional framework of what it means to be a ‘normal’ child as well as marking the boundaries of deviation from developmental norms, thereby creating the view of many disabled children as having an ‘abnormal’ development. The discourses of ‘normal child development’ and ‘normal life course’ have had a significant impact on the lives of disabled children and adults (Bloch, 2000) and help to understand why they continue to be identified as social problems in many contexts.

Classic development theories paid little attention to the child’s social life or the social, cultural and historical context until Vygotsky (1986) highlighted the important influence of social conditions on child development; he was among the first to describe children as cultural and creative beings. Vygotsky is also known as one of the founding fathers of the socio-pedagogical approach to childhood, closely related to the ecological theory of Bronfenbrenner (1979) which to an even greater extent reflected the importance of the interaction between the individual and the surroundings in a relational perspective on childhood. These socio-pedagogical views correspond with the Nordic social-interactional approach to disability discussed below and these are among the theoretical groundings of the work presented in this book.

Early theories on children and childhood were dominated by psychological accounts that focused on the process of socialization and normal child development, understood as the way in which children became adults. These tended to be narrow and individualistic and seldom addressed the diversity of children such as those from minority ethnic backgrounds or disabled children. A new understanding of childhood developed in the 1990s within a variety of disciplines when sociologists, geographers, philosophers and anthropologists entered the childhood research area and broadened the focus from the individual to the societal, historical and cultural contexts and dimensions (Corsaro, 1997; Montgomery, 2009; Qvortrup, 1994). This new approach redefined children from maturing, unfinished human beings (‘becomings’) to actors in their own rights (‘beings’). This in turn prompted important changes by viewing children as independent human beings representing their own needs and recognizing that children’s experiences of childhood, though in part shaped by biology, nonetheless varied greatly historically and culturally (James, 2011; James & Prout, 1997). Children should no longer be seen as passive objects owned and controlled by their parents but rather as social actors in their own right, contributing in various ways to their families and their communities. This view was extended to disabled children and, instead of viewing them primarily as objects of medical or psychological interventions, they were looked upon as active agents negotiating their everyday interactions with peers, adults, services and communities. This perspective encourages researchers and professionals to take children’s own experiences and perspectives more seriously than has been done previously. Listening to what children say about their everyday lives and experiences allows new ways of theorizing and acting based on their understandings in relation to various larger issues of social relations of policy and practices.

James (2011) argues that in every society one can find concepts of childhood that distinguish children from adults although the cultural meaning and importance differ. So does the basis on which such distinctions are typically made, as well as the consequences these may have for children: ‘These different social and cultural conceptions of what childhood is and should be are made manifest in laws, policies, and a range of age-based social divisions and institutions that contextualize the everyday lives of children in any society’ (ibid., p. 178). The term ‘cultural politics of childhood’ reflects the dynamic between the structural influence of various social institutions and children’s experiences of and reactions to them. Cultural politics of childhood is central to understanding the ways in which children’s citizenship unfolds for children in diverse settings. James (2011) highlights that the ways in which the identity of the child is produced is core to understanding the cultural politics of their citizenship. Identity then becomes both a process and a result under constant negotiation between the individual and their surroundings (Jenkins, 2008). The traditional view has been that children’s lack of social competence separates their citizenship status from that of adults, visioning them as incomplete in comparison to the adults that they will become (Cockburn, 1998). The notion of disabled children and youth as incompetent, vulnerable and as eternal children has made their claim to citizenship particularly difficult and their lives have often been characterized by their social exclusion and marginalization from mainstream society. In James’ (2011) view, the understanding of children’s supposed inability to participate as citizens in society has nevertheless been neither fixed nor invariable, which creates hope for the previously excluded children, such as those who are disabled, to be regarded as citizens. The idea of lived citizenship draws attention to the significance of children’s own agency with respect to their citizenship status. Children may have formal legal rights but whether or not, and how, they come to exercise these rights in their everyday lives provides an important indication of their status as citizens. As an example Kjørholt (2002) describes how Norwegian children’s participation in their local communities is considered important, replacing the notion of ‘the vulnerable and dependent child’ with ‘the competent child’ who has the right to participate in society to a certain degree. In this cultural context, there has been a shift from seeing children as ‘human becomings’ to ‘human beings’.

This new conceptualization of childhood has implications for understanding disabled children’s lives and for policy and practice directed towards them. This cautions us against viewing disabled children merely as objects of welfare or professional interventions and directs us to see them as active in their interactions with their surroundings. This raises questions of power and draws attention to the ways in which adult behaviour and social structures can affect disabled children and youth, and highlights the effects of various environments and spaces on children’s lives (Susinos, 2007). For a long time research on childhood disability was characterized by the emphasis on the burden of a disabled child on the family, highlighting family stress and coping strategies as well as the child’s impairments and specific care needs (Paun, 1975/2006; Stalker, 2012; Watson, 2012). Gradually there has been a change in the research agenda from one that focused on the individual child and the impairment towards an emphasis on disabled children’s participation in society, including actions to reduce the barriers they encounter in many environments. Increasingly researchers have directed attention to the perspectives of the children themselves and the effects of different contexts and cultural beliefs on their lives. It has also become more common to find disabled children characterized as citizens with legal and human rights rather than being defined primarily as the recipients of services (Read et al., 2012). Despite these developments, research on disabled children is still scarce and much remains to be understood and explored, in particular how to promote their full participation, inclusion and belonging in specific settings or arenas as well as their successful transitions through life (Anaby et al., 2013; Stalker, 2012; Watson, 2012; World Health Organization, 2010; 2012; Ytterhus et al., 2008).

Disability studies – rethinking disability

Disability studies is a new scholarly discipline currently being developed in many countries, with a growing emphasis on multidisciplinary approaches (Goodley, 2011). Di...

Table of contents

• Cover Page
• Title Page
• Copyright
• Contents
• List of Tables
• List of Figures
• Foreword
• Acknowledgements
• Notes on Contributors
• Introduction: Disabled Children and Youth in the Nordic Countries
• Part I: Theories and History
• Part II: Identity and Images
• Part III: Interaction and Inclusion
• Part IV: Families and Services
• Index