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Living with Death in Rehabilitation: A Phenomenological Account

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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

  1. “There-being” is a frequent translation of Dasein. Sheehan (2001: 194) convincingly argues that “having-to-be-open” better reflects Heidegger’s intention.

  2. 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.

  3. 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).

  4. Again, Sheehan would not agree to such terminology. “Openness to a shared world” is the intended connotation.

  5. Indifference included as such an orientation, as in the case of publicness, below.

  6. The phrase is drawn from Epicurus, and the subtitle of the 2013 book.

  7. Toombs (1995) is an important exception here, as Carel indicates.

  8. We intentionally use care, in reference to both the lay and Heideggerian senses.

  9. See especially Being and Time, sec. 60.

  10. This is similar to the phenomenological workshop described by Carel (2012), though practitioners made up our target group, rather than clinical subjects.

  11. DMD is an X-linked disease, present almost exclusively in male births (Bushby et al. 2010: 77).

  12. All quoted material is from ethnographic notes or dialogue transcripts, unless stated otherwise.

  13. See, for instance, “Why do I stay in the Provinces?” (Heidegger 1981).

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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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Correspondence to Thomas Abrams.

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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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