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A Disembodied Dementia: Graphic Medicine and Illness Narratives

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Abstract

The dominant discourse on dementia promotes a view that as individuals progress with the disease, they experience a neurological decline causing a loss of self. This notion, grounded in a Cartesian representation of selfhood, associates a loss of self as directly related to cognition. This paper presents an alternative anthropological framework, embodied selfhood, that challenges this representation. It then examines a potential tool, graphic medicine, to translate this theory into caregiving practice. Through analyzing three graphic novels—Wrinkles, Tangles, and Aliceheimer’s—this paper demonstrates how tension exists between different conceptions of selfhood and associated implications for caregivers and patients alike.

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Authors and Affiliations

  1. Department of Psychiatry, Brigham and Women’s Hospital, 75 Francis Street, Boston, MA, 02115, USA

    Sarah B. Kovan

  2. Department of Internal Medicine-Pediatrics, Brigham and Women’s Hospital, 75 Francis Street, Boston, MA, 02115, USA

    Derek R. Soled

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  1. Sarah B. Kovan
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Correspondence to Derek R. Soled.

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SBK and DRS equally contributed to the conception of the idea. SBK wrote the first draft. Both participated in editing and responding to feedback.

The authors did not receive support from any organization for the submitted work. The authors have no relevant financial or non-financial interests to disclose.

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Endnotes

1 Bourdieu and Merleau-Ponty are unified in conceptualizing identity as an embodied practice. The difference in these approaches largely result from the question of whether identity originates internally or externally. This debate is beyond the scope of the paper, as Kontos reconciles this tension within the concept of embodied selfhood. The self, for this paper’s purposes, is constituted by an internal/external relationship that is practiced.

2 The use of graphic novels as an intentional medium to reclaim embodied experiences of dementia parallels conversations about representations of disability and queerness discussed within “Crip Theory” (McRuer 2006). Similar to the insights of “Crip Theory,” comic art has the ability to challenge the normative view of identities and bodies that can work toward “collectively transforming” an otherwise marginalizing system (McRuer 2006, 32).

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Kovan, S.B., Soled, D.R. A Disembodied Dementia: Graphic Medicine and Illness Narratives. J Med Humanit 44, 227–244 (2023). https://doi.org/10.1007/s10912-022-09766-x

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