Living with Death in Rehabilitation: A Phenomenological Account
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.
KeywordsRehabilitation Muscular dystrophy Death Disability Phenomenology Heidegger
The authors would like to thank Barbara E. Gibson, Patricia Thille, Bhavnita Mistry, Donya Molesh, and Laura McAdam for editorial, conceptual, and empirical contributions to this ongoing project.
- Bushby, K., Finkel, R., Birnkrant, D. J., Case, L. E., Clemens, P. R., Cripe, L., et al. (2010). Diagnosis and management of Duchenne muscular dystrophy, Part 1: Diagnosis, and pharmacological and psychosocial management. The Lancet Neurology, 9(1), 77–93. https://doi.org/10.1016/S1474-4422(09)70271-6.CrossRefGoogle Scholar
- Carel, H. (2013). Illness: The cry of the flesh (Revised ed.). Farnham: Ashgate.Google Scholar
- Foucault, M. (1973). The birth of the clinic. (A Sheridan, Trans.). London: Tavistock.Google Scholar
- Frank, A. (2002). At the will of the body: Reflections on illness. Boston: Houghton Mifflin.Google Scholar
- Guignon, C. (1984). Heidegger’s ‘authenticity’ revisited. The Review of Metaphysics, 38, 321–339.Google Scholar
- Heidegger, M. (1981). “Why do i stay in the provinces?” In Heidegger: The man and his thought (pp. 27–30). Chicago: Precedent.Google Scholar
- Heidegger, M. (1996). Being and time. (J. Stambaugh, Trans.). New York: State University of New York Press.Google Scholar
- Leder, D. (1990). The absent body. Chicago: University of Chicago Press.Google Scholar
- Moxley, R. T., Pandya, S., Ciafaloni, E., Fox, D. J., & Campbell, K. (2010). Change in natural history of duchenne muscular dystrophy with long-term corticosteroid treatment: Implications for management. Journal of Child Neurology, 25(9), 1116–1129. https://doi.org/10.1177/0883073810371004.CrossRefGoogle Scholar
- Passamano, L., Taglia, A., Palladino, A., Viggiano, E., D’Ambrosio, P., Scutifero, M., et al. (2012). Improvement of survival in duchenne muscular dystrophy: Retrospective analysis of 835 patients. Acta Myologica, 31(2), 121–125.Google Scholar
- Setchell, J., Thille, P., Abrams, T., McAdam, L. C., Mistry, B., & Gibson, B. E. (2018). Enhancing human aspects of care with young people with muscular dystrophy: Results from a participatory qualitative study with clinicians. Child: Care, Health and Development, 44(2), 269–277. https://doi.org/10.1111/cch.12526.Google Scholar
- Titchkosky, T. (2007). Reading and writing disability differently: The textured life of embodiment. Toronto: University of Toronto Press.Google Scholar