Childhood and Disability in the Nordic Countries : Being, Becoming, Belonging

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. Cover 1 Childhood and Disability in the Nordic Countries 4 Contents 6 List of Tables 8 List of Figures 9 Foreword 10 Acknowledgements 13 Notes on Contributors 14 Introduction: Disabled Children and Youth in the Nordic Countries 18 Why this book? 19 Theoretical foundations 20 Nordic welfare and disability policies 21 Organisation and content of the book 23 Theories and history 23 Identity and images 24 Integration and inclusion 25 Family and services 26 Note 27 References 27 Part I: Theories and History 29 1: Perspectives on Childhood and Disability 30 Theoretical and conceptual underpinnings 31 Social studies of children and childhood 31 Disability studies – rethinking disability 34 The Nordic relational approach to disability 36 Human rights perspectives 38 Disabled children’s perspectives and experiences 40 Future directions 42 References 43 2: Disabled Children and Welfare Policy in the Nordic Countries: Historical Notes 49 Two fundamental changes 50 Families and the public sector – a new division of labour 50 Desegregation and integration 52 Three discourses 55 The therapeutic discourse – disability and the labelling theory 55 The welfare state, living conditions and citizenship 57 Normalization – old and new interpretations 58 After normalization – trends from the 1970s to the 1990s and beyond 60 References 62 3: Inclusion, Diagnostics, and Diversity: Ethical Considerations 65 Introduction 65 Disability as an ethical and political issue 65 Capabilities and inclusion 68 Diagnostics, medicalization, and moral responsibility 72 Conclusion 77 References 77 Part II: Identity and Images 80 4: ‘I Am Different, But I’m Like Everyone Else’: The Dynamics of Disability Identity 81 Disability and identity – from dichotomies to dynamics 81 The family and ‘the first generation of integration’ in Sweden 82 Taking the normalization and integration policy seriously 84 The family as a supportive space for positive self-identifications 85 Multiple identifications 86 Sven’s self-identifications 87 Positive self-identifications 88 Normal, but thinks in a different way 89 Explaining, proving and defending self-identifications 91 Multiplicity, fluidity and continuity 92 The dynamics of disability identity 93 Notes 95 References 95 5: Childhood Disability, Identity and the Body 97 Identity and the body 98 The research 100 Childhood disability 101 Entering the teenage years 103 Experiencing differentiation 105 Embodied obstacles and explorations 106 Conclusion 108 References 109 6: Ethnicity, Disability, and Identity 112 Introduction 112 The study: immigrant families with disabled children in Norway 113 Parents’ narratives about identity 113 Individual identity and disability 114 Identifying children with severe impairments 116 Ethnic identity and disability 117 The importance of belonging to a family 119 Professional narratives 119 Professionals’ narratives about identity and disability 120 Professionals’ narratives about ethnicity 122 Conclusion 124 References 125 7: Cultural Representation of Disability in Children’s Literature 126 Icelandic folk tales 127 Translated fairy tales and fantasy literature 128 Classic children’s books 130 More realistic books 132 Discussion: images of disability 136 References 138 Children’s books 140 Part III: Interaction and Inclusion 142 8: Social Inclusion as a Theoretical Concept and a Social Practice 143 Introduction 143 The emergence of ‘social inclusion’ as a significant concept 144 A question of power 145 Claiming social inclusion on one’s own terms 146 All the children contributing 148 Information and knowledge 149 Playing alone, but not necessarily lonely 150 The complexity of identity 151 Gendered pathways 153 Interplay of power positions 154 Interests and gendered agency 154 References 157 9: Does One Size Fit All? Physical Placement, Organizational Structure, and Parental Satisfaction in Norwegian Day Care Centres 159 Introduction 159 Nordic welfare and day care for children 160 Disabled children’s access to Norwegian day care centres today 161 Data and analysis 162 Major political changes – few empirical changes 163 Organizational model 165 Physical design 167 What characterizes the day care centres where parents and staff are most satisfied? 168 Trust and safety – a ‘place for my child’ 169 Hope and love 170 Discussion 171 Note 175 References 175 10: Trendsetters and Followers: Disabled Young People’s Computer Use during Leisure Time 177 The digital generation 178 Information Communication Technology and impairments 178 The digital divide 179 Surveying young people’s media habits 180 Young people’s use of ICT in 2006 180 Engagement in Internet activities 181 Gender differences 181 Computer use in school 181 Different views on the results 182 Trendsetters and followers 183 In search of explanations 184 Parental rules and access to one’s own computer 184 Concluding remarks 186 Note 186 References 187 11: A Comparison of Social Life among 11-Year-Old Disabled Children and 11-Year-Olds in General 189 Children’s development and social relations 189 Method 191 Disabled children 192 Social life outside school 193 School and social life 194 Bullying 196 Friendship and peer relations 199 Conclusions and perspectives 201 Notes 202 References 203 Part IV: Families and Services 206 12: Ordinary or Not? Families of Children Growing Up with Disabilities 207 Ordinary families? 208 Growing up with both parents? 209 Employment 211 Family experiences with the service system 213 Struggling for access to support 214 Changes over the life course 216 Conclusions 218 References 219 13: Immigrant Families with Disabled Children in Norway 222 Introduction 222 The study: immigrant families with disabled children in Norway 224 Survey methods and ethical considerations 225 Family attitudes towards disability 227 Sameness and differences 228 Stereotypes, misunderstandings, and myths 230 Interactions with the service system 231 A demanding situation 233 Conclusion 234 Note 235 References 235 14: User Perspectives on Support Services to Disabled Children and Their Families 238 Eliciting family perspectives and priorities 239 Measuring processes of care 241 What parents think and want 242 Monitoring support services 242 Wish for active but manageable roles 244 Organization of practices 245 Children’s and adolescents’ views 246 Flexibility and adequate support 246 Dealing with the system 247 Discussion and implications 248 ‘The devil is in the details’ 249 Where does the way forward lie? 249 References 250 Concluding Remarks 253 Increased emphasis on disabled children 253 Importance of families 254 Human rights perspectives 255 Social inclusion and exclusion 255 Future challenges of the Nordic welfare states 256 Increasing social inequalities 256 Increasing ethnic diversity 257 References 259 Index 260 Front Matter....Pages i-xvi Introduction: Disabled Children and Youth in the Nordic Countries....Pages 1-11 Front Matter....Pages 13-13 Perspectives on Childhood and Disability....Pages 15-33 Disabled Children and Welfare Policy in the Nordic Countries: Historical Notes....Pages 35-50 Inclusion, Diagnostics, and Diversity: Ethical Considerations....Pages 51-65 Front Matter....Pages 67-67 ‘I Am Different, But I’m Like Everyone Else’: The Dynamics of Disability Identity....Pages 69-84 Childhood Disability, Identity and the Body....Pages 85-99 Ethnicity, Disability, and Identity....Pages 101-114 Cultural Representation of Disability in Children’s Literature....Pages 115-130 Front Matter....Pages 131-131 Social Inclusion as a Theoretical Concept and a Social Practice....Pages 133-148 Does One Size Fit All? Physical Placement, Organizational Structure, and Parental Satisfaction in Norwegian Day Care Centres....Pages 149-166 Trendsetters and Followers: Disabled Young People’s Computer Use during Leisure Time....Pages 167-178 A Comparison of Social Life among 11-Year-Old Disabled Children and 11-Year-Olds in General....Pages 179-195 Front Matter....Pages 197-197 Ordinary or Not? Families of Children Growing Up with Disabilities....Pages 199-213 Immigrant Families with Disabled Children in Norway....Pages 215-230 User Perspectives on Support Services to Disabled Children and Their Families....Pages 231-245 Concluding Remarks....Pages 247-253 Back Matter....Pages 255-264 This unique collection brings together seventeen leading Nordic scholars to offer a series of in-depth, research-based studies on disabled children and young people in Scandinavia. The first comprehensive scholarly text to focus on the many aspects of growing up with a disability, this volume presents the latest research from Denmark, Finland, Iceland, Norway and Sweden, all of which have an international reputation for progressive welfare and disability policies with regard to children and families. It is based on the belief that in order to understand the lives of disabled children and young people it is important to combine social perspectives on disability studies with the social science of childhood and the human rights approach of the UN Conventions on the Rights of Persons with Disabilities and on the Rights of the Child. Many of the contributions focus on the experiences of the children themselves, with an emphasis on understanding the impact on their lives of social and environmental factors, cultural processes, and policy frameworks and definitions. Exploring a range of issues including theories and history of childhood disability, cultural images and identity formation, interaction and inclusion, and families and services, this collection will be essential reading for those interested in childhood and disability