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Endangered Forms of Personhood

  • Cathrine Degnen
Chapter

Abstract

This chapter reveals the extent to which personhood needs to be worked at, maintained, and protected. It does so by considering examples of the socially and culturally troubling boundaries between life and death, states of being what Degnen calls “endangered personhood”. These include brain death, dementia, and forms of disordered consciousness such as persistent vegetative state. All generate sharp questions around the nature of consciousness, issues of embodiment, and the ontological challenges of defining personhood or identifying where the person is located. Also explored in this chapter is the significance of narrativity and relationality for how personhood might be said to continue in the absence of individual agency, and the “loss” of the person versus the person “living on”.

References

  1. Ballenger, Jesse. 2006. The Biomedical Deconstruction of Senility and the Persistent Stigmatization of Old Age in the United States. In Thinking About Dementia: Culture, Loss, and the Anthropology of Senility, ed. Annette Leibing and Lawrence Cohen, 106–120. New Brunswick: Rutgers University Press.CrossRefGoogle Scholar
  2. Behuniak, Susan. 2011. The Living Dead? The Construction of People with Alzheimer’s Disease as Zombies. Ageing & Society 31 (1): 70–92.CrossRefGoogle Scholar
  3. Bird-David, Nurit, and Tal Israeli. 2010. A Moment Dead, a Moment Alive: How a Situational Personhood Emerges in the Vegetative State in an Israeli Hospital Unit. American Anthropologist 112: 54–65.CrossRefGoogle Scholar
  4. Brijnath, Bianca. 2014. Unforgotten: Love and the Culture of Dementia Care in India. Oxford: Berghahn.Google Scholar
  5. Brittain, Katie, Cathrine Degnen, Grant Gibson, Claire Dickinson, and Louise Robinson. 2017. When Walking Becomes Wandering: Representing the Fear of the Fourth Age. Sociology of Health and Illness 39 (2): 270–284.CrossRefGoogle Scholar
  6. Cassell, Eric. 1996. Clinical Incoherence About Persons: The Problem of the Persistent Vegetative State. Annals of Internal Medicine 125 (2): 146–147.CrossRefGoogle Scholar
  7. Cohen, Lawrence. 1998. No Aging in India: Alzheimer’s, the Bad Family, and Other Modern Things. Berkeley: University of California Press.CrossRefGoogle Scholar
  8. Cranford, Ronald, and David Smith. 1987. Consciousness: The Most Critical Moral (Constitutional) Standard for Human Personhood. American Journal of Law and Medicine 13: 233–248.Google Scholar
  9. Crichton, Jonathan, and Tina Koch. 2007. Living with Dementia: Curating Self-Identity. Dementia 6 (3): 365–381.CrossRefGoogle Scholar
  10. Degnen, Cathrine. 2012. Ageing Selves: Ageing Selves and Everyday Life in the North of England: Years in the Making. Manchester: Manchester University Press.CrossRefGoogle Scholar
  11. Department of Health. 2009. Living Well with Dementia: A National Dementia Strategy. London: Department of Health.Google Scholar
  12. Fox, Patrick. 1989. From Senility to Alzheimer’s Disease: The Rise of the Alzheimer’s Disease Movement. Milbank Quarterly 67 (1): 58–102.CrossRefGoogle Scholar
  13. Gubrium, Jaber. 1986. Oldtimers and Alzheimer’s: The Descriptive Organization of Senility. Greenwich: JAI Press.Google Scholar
  14. Haddow, Gilian. 2005. The Phenomenology of Death, Embodiment and Organ Transplantation. Sociology of Health and Illness 27 (1): 92–113.CrossRefGoogle Scholar
  15. Haldane, Maeve. 2002. Cultural Concepts of Brain Death and Transplants. McGill Reporter, January 24, 2002. Available at: https://www.mcgill.ca/reporter/34/09/lock/. Viewed 20 Apr 2017.
  16. Hellström, Ingrid. 2014. I’m His Wife Not His Carer!’ – Dignity and Couplehood in Dementia. In Beyond Loss: Dementia, Identity, Personhood, ed. Lars-Christer Hydén, Hilde Lindemann, and Jens Brockmeier, 53–68. Oxford: Oxford University Press.CrossRefGoogle Scholar
  17. Hellström, Ingrid, Mike Nolan, and Ulla Lundh. 2007. Sustaining ‘Couplehood’: Spouses’ Strategies for Living Positively with Dementia. Dementia 6 (3): 383–409.CrossRefGoogle Scholar
  18. Herskovits, Elizabeth. 1995. Struggling over Subjectivity: Debates About the “Self” and Alzheimer’s Disease. Medical Anthropology Quarterly 9 (2): 146–164.CrossRefGoogle Scholar
  19. Holstein, Martha. 1997. Alzheimer’s Disease and Senile Dementia, 1885–1920: An Interpretive History of Disease Negotiation. Journal of Aging Studies 11 (1): 1–13.CrossRefGoogle Scholar
  20. Ikels, Charlotte. 1998. The Experience of Dementia in China. Culture, Medicine and Psychiatry 22 (3): 257–283.CrossRefGoogle Scholar
  21. ———. 2002. Constructing and Deconstructing the Self: Dementia in China. Journal of Cross-Cultural Gerontology 17 (3): 233–251.CrossRefGoogle Scholar
  22. Japan Times. 2009. Recognition of Brain Death. Japan Times Editorial. June 20, 2009. Available at: https://www.japantimes.co.jp/opinion/2009/06/20/editorials/recognition-of-brain-death/#.WexrrcYdwcA. Viewed 11 July 2017.
  23. Kaufman, Sharon. 2000. In the Shadow of ‘Death with Dignity’: Medicine and Cultural Quandaries of the Vegetative State. American Anthropologist 102 (1): 69–83.CrossRefGoogle Scholar
  24. ———. 2003. Hidden Places, Uncommon Persons. Social Science & Medicine 56 (11): 2249–2261.CrossRefGoogle Scholar
  25. ———. 2006. Dementia-Near-Death and ‘Life Itself’. In Thinking About Dementia: Culture, Loss, and the Anthropology of Senility, ed. Annette Leibing and Lawrence Cohen, 23–42. New Brunswick: Rutgers University Press.CrossRefGoogle Scholar
  26. Kaufman, Sharon, and Lynn Morgan. 2005. The Anthropology of the Beginnings and Ends of Life. Annual Review of Anthropology 34: 317–341.CrossRefGoogle Scholar
  27. Kontos, Pia. 2003. ‘The Painterly Hand’: Embodied Consciousness and Alzheimer’s Disease. Journal of Aging Studies 17: 151–170.CrossRefGoogle Scholar
  28. ———. 2004. Ethnographic Reflections on Selfhood, Embodiment and Alzheimer’s Disease. Ageing & Society 24 (6): 829–849.CrossRefGoogle Scholar
  29. ———. 2006a. Embodied Selfhood: An Ethnographic Exploration of Alzheimer’s Disease. In Thinking About Dementia: Culture, Loss, and the Anthropology of Senility, ed. Annette Leibing and Lawrence Cohen, 195–217. New Brunswick: Rutgers University Press.CrossRefGoogle Scholar
  30. ———. 2006b. Review of Julian C. Hughes, Stephen J. Louw and Steven R. Sabat (eds), Dementia: Mind, Meaning and the Person. Ageing & Society 26 (5): 824–825.CrossRefGoogle Scholar
  31. Lawler, Steph. 2008. Identity: Sociological Perspectives. Cambridge: Polity.Google Scholar
  32. Leibing, Annette. 2006. Divided Gazes: Alzheimer’s Disease, the Person Within, and Death in Life. In Thinking About Dementia: Culture, Loss, and the Anthropology of Senility, ed. Annette Leibing and Lawrence Cohen, 240–268. New Brunswick: Rutgers University Press.CrossRefGoogle Scholar
  33. Leibing, Annette, and Lawrence Cohen, eds. 2006. Thinking About Dementia: Culture, Loss, and the Anthropology of Senility. New Brunswick: Rutgers University Press.Google Scholar
  34. Lock, Margaret. 2002. Twice Dead: Organ Transplants and the Reinvention of Death. Berkeley: University of California Press.Google Scholar
  35. ———. 2003. On Making Up the Good-As-Dead in a Utilitarian World. In Remaking Life and Death: Toward an Anthropology of the Biosciences, ed. Sarah Franklin and Margaret Lock, 165–192. Santa Fé: School of American Research Press.Google Scholar
  36. ———. 2004. Living Cadavers and the Calculation of Death. Body & Society 10 (2–3): 135–152.CrossRefGoogle Scholar
  37. ———. 2013. The Alzheimer Conundrum: Entanglements of Dementia and Aging. Princeton: Princeton University Press.Google Scholar
  38. Mead, George. 1934. Mind, Self, and Society. Chicago: University of Chicago Press.Google Scholar
  39. NHS. 2017. Brain Stem Death. Available at: http://www.nhs.uk/conditions/brain-death/Pages/Introduction.aspx. Viewed 25 Apr 2017.
  40. Nussbaum, Martha. 2010. From Disgust to Humanity: Sexual Orientation and Constitutional Law. New York: Oxford University Press.Google Scholar
  41. Ochs, Elinor, and Lisa Capps. 2001. Living Narrative: Creating Lives in Everyday Storytelling. Cambridge, MA: Harvard University Press.Google Scholar
  42. Ohnuki-Tierney, Emiko. 1994. Brain Death and Organ Transplantation: Cultural Bases of Medical Technology. Current Anthropology 35 (3): 233–253.CrossRefGoogle Scholar
  43. Simpson, Bob. 2004. Impossible Gifts: Bodies, Buddhism and Bioethics in Contemporary Sri Lanka. The Journal of the Royal Anthropological Institute 10 (4): 839–859.CrossRefGoogle Scholar
  44. ———. 2017. Local Virtue and Global Vision: The Practice of Eye Donation in Contemporary Sri Lanka. Medicine Anthropology Theory 4 (4): 150–170.Google Scholar
  45. Somers, Margaret. 1994. The Narrative Constitution of Identity: A Relational and Network Approach. Theory and Society 23 (5): 605–649.CrossRefGoogle Scholar
  46. Taylor, Janelle. 2008. On Recognition, Caring, and Dementia. Medical Anthropology Quarterly 22 (4): 313–335.CrossRefGoogle Scholar
  47. Whitehouse, Peter, Atwood Gaines, Heather Lindstrom, and Janice Graham. 2005. Anthropological Contributions to the Understanding of Age-Related Cognitive Impairment. The Lancet Neurology 4 (5): 320–326.CrossRefGoogle Scholar
  48. Younger, Stuart, Martha Allen, Edward Bartlett, Helmut Cascorbi, Toni Han, David Jackson, Mary Mahowald, and Barbara Martin. 1985. Psychosocial and Ethical Implications of Organ Retrieval. New England Journal of Medicine 313: 321–324.CrossRefGoogle Scholar

Copyright information

© The Author(s) 2018

Authors and Affiliations

  • Cathrine Degnen
    • 1
  1. 1.School of Geography, Politics & SociologyNewcastle UniversityNewcastle upon TyneUK

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