This paper draws on a posthuman epistemology to reimagine disability, impairment, and young people labeled-as-disabled as open-ended processes that move in and with the world to generate creative re-orderings of time, bodies, and care. Normative ideas about development and disability often (re)produce deficit-based thinking – the belief that bodily differences necessarily diminish the lives of disabled youth. Within health and social care, these logics erase differences and confine practices and policies to the well-intended but unquestioned pursuit for ‘normal’ child development – normal bodies, life stages, and social roles. Drawing on ethnographic research with three families of boys diagnosed with Duchenne muscular dystrophy (DMD), a progressive and life-limiting condition, we examine how clinical, educational, and familial relations enact the subject position of ‘the adolescent with DMD’. Using assemblage analysis, we explore how these relations produce both constraining and life-affirming possibilities for living time differently. Our analysis shows how decline, dependency, and uncertain lifespans can also generate creative capacities for connection, flourishing in the present, and new ways of imagining what it means to be human and live well. We conclude by discussing the implications for further scholarship as well as for health and social care.
Mosleh et al. (Sun,) studied this question.