Living with dying and disabilism: death and disabled children

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.