17 Disabled children’s lives: an inclusive life course and developmental approach to social policy
-
Mary Wickenden
Abstract
This chapter focuses on the structural position of disabled children in diverse contexts worldwide, and the types of global and international policies that help or hinder them in living lives on equal terms with their nondisabled peers. I will draw broadly on my own experiences of working with disabled children and their families in a number of cultural contexts: UK, South Asia and East Africa. Perhaps unsurprisingly because of globalisation, despite the many obvious or more subtle differences between these settings and the vast diversity of children’s experiences, there are many similarities in experiences and concerns across cultural divides. These suggest overarching generic trends and influences on policy and practice everywhere. Although we should be wary of generalisations, responses to both children and to disability do to some extent transcend specific cultural influences.
There has been a recent upsurge of recognition and interest in disabled children, a group who have historically been ignored and excluded both from their communities and from the majority of policy initiatives worldwide. Estimates suggest that there are 150–200 million children with disabilities globally, of these 93 million under 14 with moderate/severe impairments (WHO and World Bank, 2011; UNICEF, 2013). Around 5–10% of children have developmental difficulties (UNICEF, 2013); however, often, in many settings they are hidden from view.
Growing evidence, shows that disabled children are at a huge relative disadvantage compared with their nondisabled peers, across all sectors. This is true globally, across all regions and countries. For example they often have poorer access to healthcare and education, and experience increased levels of neglect, abuse and violence (WHO and World Bank, 2011).
Abstract
This chapter focuses on the structural position of disabled children in diverse contexts worldwide, and the types of global and international policies that help or hinder them in living lives on equal terms with their nondisabled peers. I will draw broadly on my own experiences of working with disabled children and their families in a number of cultural contexts: UK, South Asia and East Africa. Perhaps unsurprisingly because of globalisation, despite the many obvious or more subtle differences between these settings and the vast diversity of children’s experiences, there are many similarities in experiences and concerns across cultural divides. These suggest overarching generic trends and influences on policy and practice everywhere. Although we should be wary of generalisations, responses to both children and to disability do to some extent transcend specific cultural influences.
There has been a recent upsurge of recognition and interest in disabled children, a group who have historically been ignored and excluded both from their communities and from the majority of policy initiatives worldwide. Estimates suggest that there are 150–200 million children with disabilities globally, of these 93 million under 14 with moderate/severe impairments (WHO and World Bank, 2011; UNICEF, 2013). Around 5–10% of children have developmental difficulties (UNICEF, 2013); however, often, in many settings they are hidden from view.
Growing evidence, shows that disabled children are at a huge relative disadvantage compared with their nondisabled peers, across all sectors. This is true globally, across all regions and countries. For example they often have poorer access to healthcare and education, and experience increased levels of neglect, abuse and violence (WHO and World Bank, 2011).
Kapitel in diesem Buch
- Front Matter i
- Contents iii
- List of figures and tables vii
- Foreword viii
- Introduction 1
-
Service users and social policy: an introduction
- Challenging injustice: the importance of collective ownership of social policy 14
- Participation and solidarity in a changing welfare state 22
- Social policy in developing countries: a post-colonial critique and participatory inquiry 33
- Advancing sustainability: developing participatory social policy in the context of environmental disasters 43
- Social policy and disability 51
- A case study of children’s participation in health policy and practice 62
- Who owns co-production? 74
-
Critiquing and reconceiving Beveridge’s ‘five giant evils’: key areas of British post-war social policy from a lived experience perspective
- Rethinking disabled people’s rights to work and contribute 86
- Talking policy as a patient 95
- ‘We don’t deal with people, we deal with bricks and mortar’: a lived experience perspective on UK health and housing policy 98
- Education (ignorance) addressing inclusive education: the issues and its importance from a participatory perspective 103
- “For work, we came here to find work”: migrant Roma employment and the labour of language 107
-
The contribution of service user knowledges
- Disability policy and lived experience: reflections from regional Australia 120
- Renewing epistemologies: service user knowledge 132
- Pornography, feminist epistemology and changing public policy 142
- Making social policy internationally: a participatory research perspective 147
-
An inclusive life course and developmental approach to social policy
- Disabled children’s lives: an inclusive life course and developmental approach to social policy 163
- Troubled youth and troubling social policy: mental health from a Mad Studies perspective 172
- Disability: an inclusive life course and developmental approach to social policy 181
- Independent living from a Black Disabled Woman’s perspective 188
- Food poverty and the policy context in Ireland 195
- Implementing race equality policies in British health and social care: a perspective from experience 205
- Participatory approaches to social policy in relation to ageing 211
- Death, dying and digital stories 223
-
Transforming social policy
- People acting collectively can be powerful 233
- Their participation and ours: competing visions of empowerment 243
- A participatory approach to professional practice 251
- Dreams of justice 257
- Sustainable-participatory social policy 262
- Participatory social policy in a large EU research project 277
-
Campaigning and change
-
Approaches to activism
- ‘What is strong, not what is wrong’ 292
- Participatory social policy and social change: exploring the role of social entrepreneurship linked to forms of social and micro enterprises in the field of social care 297
- Public duty, whistleblowing and scandal: influences on public policy 306
- ‘Informed gender practice in acute mental health’: when policy makes sense 311
- Making the case for single sex wards 314
- #JusticeforLB: in search of truth, accountability and justice 319
-
The role of online platforms and social media
- Guerilla policy: new platforms for making policy from below 323
- A Magna Carta for learning disabled people 327
- Pat’s Petition: The emerging role of social media and the internet 332
-
Breaking down barriers
-
Inclusion and difference in the formulation and operation of social policy
- “LGBT History Month is a thing!” The story of an equal rights campaign 338
- Progressing gender recognition and trans rights in the UK 343
-
User-led approaches to social policy
- Transforming professional training and education – a gap mending approach: the PowerUs European partnership 349
- Grassroots tackling policy: the making of the ‘Spartacus Report’ 355
- Involvement for influence: developing the 4Pi Involvement Standards 362
-
Participatory research and evaluation
- From expert to service user: challenging how lived experience is demeaned 369
- Participatory methodologies involving marginalised perspectives 376
- Developing the evidence to challenge ‘welfare reform’: the road to ‘Cash Not Care’ 389
- Service user-controlled research for evidence-based policymaking 394
- Participatory citizenship, gender and human trafficking in Nepal 406
- Experiential knowledge in mental health policy and legislation: can we ever change the agenda? 418
- Conclusion 427
- Notes on contributors 435
- Index 447
Kapitel in diesem Buch
- Front Matter i
- Contents iii
- List of figures and tables vii
- Foreword viii
- Introduction 1
-
Service users and social policy: an introduction
- Challenging injustice: the importance of collective ownership of social policy 14
- Participation and solidarity in a changing welfare state 22
- Social policy in developing countries: a post-colonial critique and participatory inquiry 33
- Advancing sustainability: developing participatory social policy in the context of environmental disasters 43
- Social policy and disability 51
- A case study of children’s participation in health policy and practice 62
- Who owns co-production? 74
-
Critiquing and reconceiving Beveridge’s ‘five giant evils’: key areas of British post-war social policy from a lived experience perspective
- Rethinking disabled people’s rights to work and contribute 86
- Talking policy as a patient 95
- ‘We don’t deal with people, we deal with bricks and mortar’: a lived experience perspective on UK health and housing policy 98
- Education (ignorance) addressing inclusive education: the issues and its importance from a participatory perspective 103
- “For work, we came here to find work”: migrant Roma employment and the labour of language 107
-
The contribution of service user knowledges
- Disability policy and lived experience: reflections from regional Australia 120
- Renewing epistemologies: service user knowledge 132
- Pornography, feminist epistemology and changing public policy 142
- Making social policy internationally: a participatory research perspective 147
-
An inclusive life course and developmental approach to social policy
- Disabled children’s lives: an inclusive life course and developmental approach to social policy 163
- Troubled youth and troubling social policy: mental health from a Mad Studies perspective 172
- Disability: an inclusive life course and developmental approach to social policy 181
- Independent living from a Black Disabled Woman’s perspective 188
- Food poverty and the policy context in Ireland 195
- Implementing race equality policies in British health and social care: a perspective from experience 205
- Participatory approaches to social policy in relation to ageing 211
- Death, dying and digital stories 223
-
Transforming social policy
- People acting collectively can be powerful 233
- Their participation and ours: competing visions of empowerment 243
- A participatory approach to professional practice 251
- Dreams of justice 257
- Sustainable-participatory social policy 262
- Participatory social policy in a large EU research project 277
-
Campaigning and change
-
Approaches to activism
- ‘What is strong, not what is wrong’ 292
- Participatory social policy and social change: exploring the role of social entrepreneurship linked to forms of social and micro enterprises in the field of social care 297
- Public duty, whistleblowing and scandal: influences on public policy 306
- ‘Informed gender practice in acute mental health’: when policy makes sense 311
- Making the case for single sex wards 314
- #JusticeforLB: in search of truth, accountability and justice 319
-
The role of online platforms and social media
- Guerilla policy: new platforms for making policy from below 323
- A Magna Carta for learning disabled people 327
- Pat’s Petition: The emerging role of social media and the internet 332
-
Breaking down barriers
-
Inclusion and difference in the formulation and operation of social policy
- “LGBT History Month is a thing!” The story of an equal rights campaign 338
- Progressing gender recognition and trans rights in the UK 343
-
User-led approaches to social policy
- Transforming professional training and education – a gap mending approach: the PowerUs European partnership 349
- Grassroots tackling policy: the making of the ‘Spartacus Report’ 355
- Involvement for influence: developing the 4Pi Involvement Standards 362
-
Participatory research and evaluation
- From expert to service user: challenging how lived experience is demeaned 369
- Participatory methodologies involving marginalised perspectives 376
- Developing the evidence to challenge ‘welfare reform’: the road to ‘Cash Not Care’ 389
- Service user-controlled research for evidence-based policymaking 394
- Participatory citizenship, gender and human trafficking in Nepal 406
- Experiential knowledge in mental health policy and legislation: can we ever change the agenda? 418
- Conclusion 427
- Notes on contributors 435
- Index 447
