Embodied integrity, shaping surgeries, and the profoundly disabled child

This chapter seeks to develop our model of ‘embodied integrity’ by addressing its capacity to protect profoundly disabled children from irreversible non-therapeutic bodily interventions and to frame a more appropriate ethico-legal response to their care. Specifically, we suggest that the decision-making process in the controversial case of Ashley X, and much subsequent academic commentary, was impoverished and served to reify understandings of severely disabled children as frozen in a state of perpetual childhood and reducible to their bodies. In contrast, the conception of embodied integrity that we flesh out in this chapter takes account of these children’s corporeality while also recognising that they are entangled in institutional and familial contexts. Responding to evidence of a growing demand for growth attenuation and shaping surgeries we argue that our embodied understanding of integrity promotes the immediate and future interests of children, including those who are profoundly disabled