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.
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Notes
“There-being” is a frequent translation of Dasein. Sheehan (2001: 194) convincingly argues that “having-to-be-open” better reflects Heidegger’s intention.
This wording, at least as translated, is clumsy. Heidegger is arguing that temporality temporalizes by continually constituting its past and present in its timely existence. See Being and Time, sec. 65.
This interpretation of Heidegger’s authenticity, as a “style of being” rather than its content, draws from Guignon (1984). “The distinction between authenticity and inauthenticity seems to hinge not on what one is in the sense of specific possibilities one takes up, but rather the how one lives." (Guignon 1984: 334).
Again, Sheehan would not agree to such terminology. “Openness to a shared world” is the intended connotation.
Indifference included as such an orientation, as in the case of publicness, below.
The phrase is drawn from Epicurus, and the subtitle of the 2013 book.
Toombs (1995) is an important exception here, as Carel indicates.
We intentionally use care, in reference to both the lay and Heideggerian senses.
See especially Being and Time, sec. 60.
This is similar to the phenomenological workshop described by Carel (2012), though practitioners made up our target group, rather than clinical subjects.
DMD is an X-linked disease, present almost exclusively in male births (Bushby et al. 2010: 77).
All quoted material is from ethnographic notes or dialogue transcripts, unless stated otherwise.
See, for instance, “Why do I stay in the Provinces?” (Heidegger 1981).
References
Aho, K. A. (2016). Heidegger, ontological death, and the healing professions. Medicine, Health Care and Philosophy, 19(1), 55–63. https://doi.org/10.1007/s11019-015-9639-4.
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.
Carel, H. (2012). Phenomenology as a resource for patients. The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine, 37(2), 96–113. https://doi.org/10.1093/jmp/jhs008.
Carel, H. (2013). Illness: The cry of the flesh (Revised ed.). Farnham: Ashgate.
Carel, H. (2016). The phenomenology of illness. New York, NY: Oxford University Press.
Foucault, M. (1973). The birth of the clinic. (A Sheridan, Trans.). London: Tavistock.
Frank, A. (2002). At the will of the body: Reflections on illness. Boston: Houghton Mifflin.
Guignon, C. (1984). Heidegger’s ‘authenticity’ revisited. The Review of Metaphysics, 38, 321–339.
Heidegger, M. (1981). “Why do i stay in the provinces?” In Heidegger: The man and his thought (pp. 27–30). Chicago: Precedent.
Heidegger, M. (1996). Being and time. (J. Stambaugh, Trans.). New York: State University of New York Press.
Leder, D. (1990). The absent body. Chicago: University of Chicago Press.
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.
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.
Reynolds, J. M. (2017). Merleau-Ponty, world-creating blindness, and the phenomenology of non-normate bodies. Chiasmi International, 19, 419–436. https://doi.org/10.5840/chiasmi20171934.
Schütz, A. (1945). On multiple realities. Philosophy and Phenomenological Research, 5, 533–576.
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.
Sheehan, T. (2001). A paradigm shift in Heidegger research. Continental Philosophy Review, 34(2), 183–202. https://doi.org/10.1023/A:1017568025461.
Svenaeus, F. (2011). Illness as unhomelike being-in-the-world: Heidegger and the phenomenology of medicine. Medicine, Health Care and Philosophy, 14(3), 333–343. https://doi.org/10.1007/s11019-010-9301-0.
Titchkosky, T. (2007). Reading and writing disability differently: The textured life of embodiment. Toronto: University of Toronto Press.
Toombs, S. K. (1995). The lived experience of disability. Human Studies, 18, 9–23.
Acknowledgements
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.
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Abrams, T., Setchell, J. Living with Death in Rehabilitation: A Phenomenological Account. Hum Stud 41, 677–695 (2018). https://doi.org/10.1007/s10746-018-09484-1
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DOI: https://doi.org/10.1007/s10746-018-09484-1