The Pain Scarf: A Tactile Autopathography

The presentation will fall within the medicine and the senses theme. Part of my dissertation will include an autoethnographic exploration of my tonsillectomy operation scheduled for November 2024. I am inspired by such ‘autopathographies’ (accounts of one’s own illness) as Lochlann Jain’s "Malignant" to document the process of the operation and recovery, while supplementing this documentation with an approach that centres on materiality and touch. I will be knitting a pain scale scarf, an unconventional form of data visualisation (or rather data tactilisation): each day’s pain will be documented by a specific colour panel chosen based on my synaesthetic allocation. The resulting scarf will be an innovative example of tactile and material autopathography. The presentation will involve a showcase of the scarf and an exploration of the ideas behind it, as well as a mediation on how a sensory orientation can contribute to understandings of illness, surgery and pain from a patient-centred perspective.
Keywords: medical humanities, autopathography, knitting, data visualisation, touch

VK Preston ∆ (History, Concordia University, Canada)

Between Water and Stone, Knowledge and Inter-generational Care

This paper intercuts accounts of caregiving, photography, and writing during the Covid-19 polycrisis and austerity. As part of a cycle of research creation, investigating the changing role of the caregiver and transformations of health care infrastructure, this project investigates the cultural and political experiences of caregivers, encountering what have been designated, problematically, alternative levels of care.
What current and historic tensions inflect intergenerational relationship in the neoliberalization of long term care? What capacities can arts and somatic practices bring to bear on patient and caregiver wellbeing—or indeed testimony? Why are robust technologies of cultural and sensory practice, histories of the senses, and relationships devalued in present-day health infrastructures?
How can arts and cultural practices intervene in, and testify regarding the intergenerational context of politically undermined institutions? How are 2SLGBTQ+ persons currently affected by isolation measures in such institutions? And how can arts solidarities communicate most effectively within the culturally erosive forces of economic austerity and neoliberalism as contexts for end-of-life and caregiver supports?
This work argues for renewed, interdisciplinary, and cultural attention to patient and relational care that prioritizes cultural and community foundations among all care practices.
Keywords: Health care, Caregivers, Medicine, Long term care, Arts & Embodiment.

Paule Joseph (National Institutes of Health/ NIAAA & NIDCD, Bethesda USA)

The Bitter Truth: Alcohol Use and Its Effects on Chemosensory Function

Chemosensory dysfunction, including deficits in taste and smell, is an underexplored yet critical aspect of alcohol use disorders (AUD) and heavy alcohol consumption. Such dysfunction can significantly impact the quality of life (QOL) domains—physical, psychological, social, and environmental. Despite known associations between chronic alcohol use and chemosensory deficits, large-scale studies examining specific chemosensory impairments, their behavioral correlates, and QOL outcomes are limited. This research investigates the relationship between alcohol consumption and chemosensory function across three studies. The studies aimed to: (1) examine the impact of risky drinking on chemosensory function, (2) assess associations between olfactory distortions (parosmia & phantosmia), problematic drinking, and depressive symptoms, and (3) evaluate how chemosensory impairments influence QOL. Data were drawn from NHANES 2013–2014 (395 participants), the NIAAA survey study (250 participants), and a longitudinal study (466 participants) from the NIAAA COVID-19 Pandemic Impact on Alcohol study. Chemosensory function, depressive symptoms, and QOL domains were analyzed using regression and linear mixed models.
Keywords: Chemosensory dysfunction, alcohol use disorder, quality of life, olfactory distortion, taste impairment, risky drinking.