Living with dying and disabilism: death and disabled children

Abstract

This paper explores the ‘offensive presence’ death has sometimes represented in disability studies. The paper focuses on interviews with three mothers of children with the label of life‐limiting and life‐threatening impairments and positions their experiences within the current policy context for disabled children in England. The narratives are part of a wider on‐going study funded by the Economic and Social Research Council ‘Does Every Child Matter, post‐Blair? The interconnections of disabled childhoods’ (RES‐062‐23‐1138). Findings include: (i) families experience social isolation and poverty; (ii) support from services is lacking and/or inappropriate; (iii) families worry about the future and the (physical, social and emotional) costs of care. The paper concludes by suggesting that social oppression theories of disability have much to offer in terms of challenging the disadvantage disabled children and their families’ experience during life and in death.

Keywords:

• death
• dying
• disabilism
• children

Acknowledgements

The research team is grateful to Economic and Social Research Council for their funding of the project: ‘Does Every Child Matter, post‐Blair? The interconnections of disabled childhoods’ (RES‐062‐23‐1138). My thanks go to Dan Goodley for his support and comments on an earlier draft of this paper. Finally, we would like to thank the mothers who shared their stories.