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Stories of Dis-ease: Ethics and Survival in Dementia Narratives

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The Ethics of Survival in Contemporary Literature and Culture
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Abstract

The early twenty-first century has seen a rise of dementia narratives, which reflect upon a number of different aspects of ethics and survival. As argued in this chapter, many of these narratives develop a poetics of dis-ease, which challenges readers’ abilities to respond to stories of dementia while suggesting that ‘survival’ in dementia is enabled through narratives that help sustain a strong sense of selfhood. Based on an analysis of Michael Ignatieff’s Scar Tissue (1993), Thomas DeBaggio’s Losing My Mind (2003), Lisa Genova’s Still Alice (2007), and Emma Healey’s Elizabeth Is Missing (2014), this chapter explores the dis-ease created by these narratives and the moral attention they demand to discuss the function of dementia narratives for debates about ageing, forgetting, and survival in today’s attention economy.

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Notes

  1. 1.

    DeBaggio (2003, 94).

  2. 2.

    Sontag (2004).

  3. 3.

    Sontag (2004).

  4. 4.

    Hodges (3 Sept. 2018).

  5. 5.

    Debord (1995).

  6. 6.

    Barad (2012, 81).

  7. 7.

    Barad (2007, 178).

  8. 8.

    Haraway (2016, 1).

  9. 9.

    Short-term memory losses, caused by medication etc., are not subsumed under the term ‘dementia’ as used in this essay.

  10. 10.

    DeBaggio (2003, 5, 6, 41).

  11. 11.

    Wolfson et al. (2011, 1111).

  12. 12.

    Shakespeare (2006 [1603], 2.7.166–167).

  13. 13.

    Franzen (2003, 22).

  14. 14.

    Franzen (2003, 24).

  15. 15.

    Hughes (2011, viii).

  16. 16.

    Franzen (2003, 37).

  17. 17.

    DeBaggio (2003, 5).

  18. 18.

    DeBaggio (2003, 181).

  19. 19.

    Ignatieff (1993, 1).

  20. 20.

    Ignatieff (1993, 4).

  21. 21.

    Ignatieff (1993, 90).

  22. 22.

    See WHO (2020, n.p.).

  23. 23.

    WHO (2020, n.p.).

  24. 24.

    See Nussbaum (1985).

  25. 25.

    Nussbaum (1985, 527, 516; emphasis in original).

  26. 26.

    Nussbaum (1985, 522).

  27. 27.

    Barad (2007, 178).

  28. 28.

    Couser (2011, 3; emphasis in original).

  29. 29.

    See Vedder (2012).

  30. 30.

    DeBaggio (2003, 6).

  31. 31.

    DeBaggio (2003, n.p.).

  32. 32.

    DeBaggio (2003, 194).

  33. 33.

    Ignatieff (1993, 126).

  34. 34.

    Ignatieff (1993, 112).

  35. 35.

    Ignatieff (1993, 159–160).

  36. 36.

    Herskovitz (1995, 148).

  37. 37.

    Basting (2002, 96), see also Kitwood (1997) and Post (1995).

  38. 38.

    Franzen (2003, 29–30).

  39. 39.

    Genova (2007, 230–231), cf. Kontos (2012, 8).

  40. 40.

    Kontos (2012, 4), cf. Merleau-Ponty (1964, 5).

  41. 41.

    Bourdieu (1977), see Kontos (2012).

  42. 42.

    Kitwood (1997, 8).

  43. 43.

    Kitwood and Bredin (1992, 275).

  44. 44.

    Kontos (2012, 8).

  45. 45.

    Falcus (2014, 86).

  46. 46.

    Cf. Vedder (2012, 283).

  47. 47.

    Franzen (2003, 25).

  48. 48.

    Roy (2009, 42).

  49. 49.

    Kitwood (1997, 69).

  50. 50.

    Kontos (2012, 9).

  51. 51.

    Healey (2014, 18–19).

  52. 52.

    See Baumbach (2019).

  53. 53.

    Williams (2018, 33).

  54. 54.

    Post (2000).

  55. 55.

    Hughes (2011, 232).

  56. 56.

    Hughes (2011, 256).

  57. 57.

    See Mack and Rock (1998).

  58. 58.

    Healey (2014, 50).

  59. 59.

    Vedder (2012, 288).

  60. 60.

    Ignatieff (1993, 140–141).

  61. 61.

    Ignatieff (1993, 144).

  62. 62.

    Ignatieff (1993, 144).

  63. 63.

    Chabris and Simons (2010).

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Correspondence to Sibylle Baumbach .

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Baumbach, S. (2021). Stories of Dis-ease: Ethics and Survival in Dementia Narratives. In: Freiburg, R., Bayer, G. (eds) The Ethics of Survival in Contemporary Literature and Culture. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-030-83422-7_8

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