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The Poetics and Politics of Alzheimer’s Disease Life-Writing pp 95–116Cite as

Palgrave Macmillan

On Reclaiming Authority: The Enabling Discourse of Alzheimer’s Disease

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Part of the Palgrave Studies in Literature, Science and Medicine book series (PLSM)

Abstract

This chapter illustrates how more recent Alzheimer’s disease patient narratives take patient activism further in both form and contents. Disease-imposed constraints become the narrative’s core in terms of both aesthetic presentation and political pursuit. This development parallels the changes observed in caregiver life-writing, as patients and their needs reach the centre of narrative presentation and performance. This chapter argues that patients can thrive, building on earlier advocacy of their fellow sufferers, on more fragmented illness presentation. They can choose narrative forms that match their attention span as well as their political intentions, and show them as living within their remaining capabilities. In this way, patients authoritatively claim their continued independence within their narrative abilities, making themselves partners in the ensuing sociopolitical, cultural and economic debates.

Keywords

  • Diary
  • Essay
  • Illness performance
  • Patient authority
  • Postmodern identity

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Notes

  1. 1.

    Mobley, Young Hope, p. 13 (Mobley 2007).

  2. 2.

    Christian Zimmermann and Peter Wißmann, Auf dem Weg mit Alzheimer. Wie sich mit einer Demenz leben lässt [On the road with Alzheimer’s. How it is possible to live with dementia] (Frankfurt am Main: Mabuse-Verlag, 2011), p. 47 (Zimmermann and Wißmann 2011).

  3. 3.

    Patrick McDonagh, Idiocy. A Cultural History (Liverpool: Liverpool University Press, 2008), p. 336 (McDonagh 2008).

  4. 4.

    Ramanathan, Alzheimer Discourse, p. 70 (see above p. 77) (Ramanathan 1997).

  5. 5.

    Lennard J. Davis, Enforcing Normalcy. Disability, Deafness, and the Body (London: Verso, 1995), pp. 22, 142 (Davis 1995).

  6. 6.

    Lee, Just Love Me, p. 50 (Lee 2003); all further references incorporated in the text; see the DASNI document http://www.dasninternational.org/2011/DASNI_A5_12pp_Final.pdf (accessed August 2016), with short biographies of founding members.

  7. 7.

    Patricia Haas Stanley, ‘The patient’s voice: a cry in solitude or a call for community’, Literature and Medicine, 23.2 (2004), pp. 346–363 (Stanley 2004).

  8. 8.

    Martina Zimmermann, ‘Dementia in life-writing: our health care system in the words of the sufferer’, Neurological Sciences, 32 (2011), pp. 1233–1238 (Zimmermann 2011).

  9. 9.

    Hill, Positive Aging, p. 28 (Hill 2005).

  10. 10.

    Ryan, Bannister and Anas, ‘The dementia narrative’, p. 150 (Ryan et al. 2009).

  11. 11.

    Richard Taylor, Alzheimer’s from the Inside Out (Baltimore: Health Professions Press, 2007) (Taylor 2007); references incorporated in the text.

  12. 12.

    Shlomith Rimmon-Kenan, ‘The story of “I”: illness and narrative identity’, Narrative, 10.1 (2002), pp. 9–27, p. 13 (Rimmon-Kenan 2002).

  13. 13.

    Alzheimer’s Disease International, ‘In memory of Richard Taylor’, http://www.alz.co.uk/news/in-memory-of-richard-taylor-phd (accessed August 2016).

  14. 14.

    Basting, Forget Memory, pp. 145–153, esp. pp. 152, 149 (Basting 2009).

  15. 15.

    Couser, Recovering Bodies, p. 185 (Couser 1997).

  16. 16.

    Mike Donohue, From AA to AD, a Wistful Travelogue (Seattle: CreateSpace, 2009) (Donohue 2009); see also: Jon C. Stuckey, ‘Blessed assurance. The role of religion and spirituality in Alzheimer’s disease caregiving and other significant life events’, Journal of Aging Studies, 15 (2001), pp. 69–84 (Stuckey 2001).

  17. 17.

    Christine Bryden, Dancing with Dementia. My Story of Living Positively with Dementia (London: Jessica Kingsley Publishers, 2005) (Bryden 2005); references incorporated in the text.

  18. 18.

    Nancy A. Pachana et al., ‘Comparison of neuropsychological functioning in Alzheimer’s disease and frontotemporal dementia’, Journal of the International Neuropsychological Society, 2 (1996), pp. 505–510 (Pachana et al. 1996).

  19. 19.

    Boden, Who Will I Be When I Die? (Boden 1998).

  20. 20.

    Rose, ‘Autistic autobiography’, p. 52 (Rose 2008).

  21. 21.

    Boden, Who Will I Be When I Die?, p. 48 (Boden 1998); Couser made a similar observation in relation to HIV/AIDS narratives; see: Recovering Bodies, pp. 82–84 (Couser 1997).

  22. 22.

    Simi Linton, ‘Reassigning meaning’, in The Disability Studies Reader, ed. by Davis, pp. 223–236 (Linton 2010).

  23. 23.

    Hill, Positive Aging, pp. 169–175 (Hill 2005).

  24. 24.

    Boyd H. Davis, ‘Introduction: some commonalities’, in Alzheimer Talk, Text and Context. Enhancing Communication, ed. by Boyd H. Davis (New York: Palgrave Macmillan, 2008), pp. xi–xxi, p. xvi (Davis 2008); and therein: Dena Shenk, ‘There was an old woman: maintenance of identity by people with Alzheimer’s dementia’, pp. 3–17 (Shenk 2008).

  25. 25.

    Anthony Elliott, Concepts of the Self (Cambridge: Polity Press, 2008), p. 154 (Elliott 2008).

  26. 26.

    See also: Annette Leibing, ‘Divided gazes. Alzheimer’s disease, the person within, and death in life’, in Thinking about Dementia, ed. by Leibing and Cohen, pp. 240–268, pp. 253, 259, 263 fn. 19 (Leibing 2006); and Jane Wilkinson, ‘Remembering forgetting’, Status Quaestionis, 6 (2014), pp. 103–121, p. 107 (Wilkinson 2014).

  27. 27.

    See also her internet presence: ‘Christine Bryden. Dementia from an insider’s perspective’, http://www.christinebryden.com/ (accessed August 2016).

  28. 28.

    See, for example, Tiffany W. Chow, ‘Personality in frontal lobe disorders’, Current Psychiatry Reports, 2.5 (2000), pp. 446–451 (Chow 2000); Bruce L. Miller et al., ‘Emergence of artistic talent in frontotemporal dementia’, Neurology, 51 (1998), pp. 978–981 (Miller et al. 1998).

  29. 29.

    See, for example, Carlos H. Espinel, ‘de Kooning’s late colours and forms: dementia, creativity, and the healing power of art’, The Lancet, 347 (1996), pp. 1096–1098 (Espinel 1996).

  30. 30.

    Claude Couturier, Puzzle. Journal d’une Alzheimer [Jigsaw. Diary of an Alzheimer’s patient] (Paris: Josette Lyon, 2004) (Couturier 2004); references incorporated in the text.

  31. 31.

    ‘Incinéré’ can be translated as ‘incinerated’ or ‘cremated’, the latter refering to subjects, the former rather to objects; for Couturier’s use of metaphors, see: Zimmermann, ‘Alzheimer’s disease metaphors’ (Zimmermann forthcoming).

  32. 32.

    Ruth Abraham offers suggestions for interpretation of patient art work, in When Words Have Lost Their Meaning. Alzheimer’s Patients Communicate through Art (Westport: Praeger, 2005), esp. pp. 68–81, 105–138 (Abraham 2005).

  33. 33.

    Consider also Couser’s observations on the congruence between the reader’s expectation of a terminally ill patient and the form of diary that admits death as a possibility and prospect; see: Recovering Bodies, p. 65 (Couser 1997).

  34. 34.

    Pascale Krémer, ‘Alzheimer. Récits d’un exil intérieur’, Le Monde 2, 20 October 2007 (Krémer 2007); see also Couturier’s forum: http://fr.groups.yahoo.com/group/vivremalgre_alzheimer/, which was initiated in May 2004; it continued to be active when I accessed it in August 2013, but was inactive by November 2015.

  35. 35.

    Abraham, When Words Have Lost Their Meaning, pp. 71, 112 (Abraham 2005).

  36. 36.

    Kim Howes Zabbia, Painted Diaries. A Mother and Daughter’s Experience through Alzheimer’s (Minneapolis: Fairview Press, 1996) (Zabbia 1996).

  37. 37.

    This idea is in line with John Perry’s concept of personhood in Alzheimer’s disease, as he asserts that ‘identities change, in the psychological sense, but they are the same person’; see: ‘Diminished and fractured selves’, in Personal Identity and Fractured Selves, ed. by Mathews, Bok and Rabins, pp. 129–162, p. 149 (Perry 2009).

  38. 38.

    Helga Rohra, Aus dem Schatten treten. Warum ich mich für unsere Rechte als Demenzbetroffene einsetze [Stepping out of the shadow. Why I am advocating our rights as those afflicted by dementia] (Frankfurt am Main: Mabuse-Verlag, 2011) (Rohra 2011); references incorporated in the text.

  39. 39.

    ‘Ich bin dement, na und?’ [I am demented, so what?], Süddeutsche Zeitung, 1 April 2010.

  40. 40.

    ‘Demenz Support Stuttgart. Philosophie’, http://www.demenz-support.de/portraet/philosophie (accessed August 2016).

  41. 41.

    Basting, Forget Memory, presents a powerful collection of examples that ‘stress the extent to which [dementia caregiving] is a reciprocal partnership’, p. 69 (Basting 2009).

  42. 42.

    Next to Rohra’s narrative, DSS endorsed Zimmermann and Wißmann, Auf dem Weg mit Alzheimer (Zimmermann and Wißmann 2011).

  43. 43.

    Helen Merlin, ‘Ich will integriert werden!’ [I want to be integrated!], in ‘Ich spreche für mich selbst.’ Menschen mit Demenz melden sich zu Wort [‘I speak for myself.’ People with dementia have their say], ed. by Demenz Support Stuttgart (Frankfurt am Main: Mabuse-Verlag, 2010), pp. 11–24 (Merlin 2010).

  44. 44.

    A further aspect of growth comes from the fact that Rohra’s initial fear that her condition might disrupt the structured, organised and calm environment and rhythm her son, who has Asperger’s syndrome, requires, is not confirmed: she comes to realise that her son matures in the confrontation with Rohra’s dementia, and their bond becomes even stronger.

  45. 45.

    Rudi Assauer, Wie ausgewechselt. Verblassende Erinnerungen an mein Leben [Like substituted. Fading memories of my life] (Munich: Riva, 2012) (Assauer 2012); references incorporated in the text; ‘ausgewechselt’ can refer to a substitution, for example, in football, but it also has the meaning of ‘being changed’.

  46. 46.

    ‘Bulb’ refers to the literal translation of ‘Birne’, which is of colloquial use.

  47. 47.

    For details, see the account by Assauer’s daughter: Bettina Michel with Eva Mohr, Papa, ich bin für Dich da. Wie Sie Demenzkranken helfen können [Dad, I am there for you. How you can help dementia patients] (Munich: mvg Verlag, 2014), esp. pp. 154–161 (Michel 2014).

  48. 48.

    See, e.g., Katrin Elger, ‘Das Demenz-Dilemma’ [The dementia dilemma], Der Spiegel, 19 September 2011 (Elger 2011); Amina Linke, ‘Münchnerin (59): So lebe ich mit Demenz’ [Citizen of Munich (59): this is how I live with dementia], Münchner Abendzeitung, 25 May 2012 (Linke 2012); Ulrike Luthmer-Lechner, ‘Ich bin dement – na und?’ [I am demented – so what?], Göppinger Kreisnachrichten, 14 March 2013 (Luthmer-Lechner 2013); and the interview with Michael Krons in the TV show ‘Im Dialog’ [In dialogue] on 17 February 2012; see: ‘Helga Rohra – Im Dialog vom 17.02.2012’, http://www.youtube.com/watch?v=Bq6M_3uCqQQ (accessed August 2016).

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  1. King’s College, London, London, United Kingdom

    Martina Zimmermann

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  1. Martina Zimmermann
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Zimmermann, M. (2017). On Reclaiming Authority: The Enabling Discourse of Alzheimer’s Disease. In: The Poetics and Politics of Alzheimer’s Disease Life-Writing. Palgrave Studies in Literature, Science and Medicine. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-319-44388-1_5

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