Abstract

This paper uses an ongoing ethnography of childhood rehabilitation to rethink the Heideggerian phenomenology of death. We argue that Heidegger’s threefold perishing/death/dying framework offers a fruitful way to chart how young people, their parents, and practitioners address mortality in the routine management of muscular dystrophies. Heidegger’s almost exclusive focus on being-towards-death as an individualizing existential structure, rather than the social life with and around death, is at odds with the clinical experience we explore in this paper. After looking to the basic structures of Heidegger’s philosophy of death, we point to recent work by Leder, Svenaeus, Aho, and Carel, bringing health and the spaces of healthcare into our purview. Turning to ethnographic data, we argue that a revised phenomenology of death gives a nuanced account of how health care practitioners address death, dying, and perishing, and outline some steps toward a more ontologically sensitive clinical space. These revisions are in line with recent work in disability studies, that see disability as more than a death sentence. We advocate adjusting phenomenological reflections on disability, to be framed as a way of life, rather than as a deficient or especially deadly mode of human existence.