Chronic Com-Position Work: Embodying Patient Organization and Patient Improvisation within Russian Multiple Sclerosis Society
Author: Alexandra Endaltseva, aendalts@gmail.com
Department: CEMS
University: École des Hautes Études en Sciences Sociales , France
Supervisor: Isabelle Ville / Sonja Jerak-Zuiderent
Year of completion: 2020
Language of dissertation: English
Keywords:
patient organisation
, composition
, multiple sclerosis
, patient movement
Areas of Research:
Health
, Social Movements, Collective Action and Social Change
, Body in the Social Sciences
Abstract
How does a patient movement move? The research introduced in this dissertation is moved by this curiosity. The propositions which follow are grounded in the ethnographic study with(in) the patient organization “Russian Multiple Sclerosis Society” (RuMSS). Exploring how lives (collective organizational life and personal lives of society’s members) with multiple sclerosis are composed within RuMSS, I introduce chronic com-position - a concept-in-the-making for making sense of and sensing patient movement. This notion has two foci: composition, how to position oneself with, to create and maintain solidarity of place; and chronic, how to stay attuned to the multiple time-and-space scapes when com-posing. For this, I attend to how a social movement of chronic patients is being experienced through doings, makings, and feelings. How it is lived with care (or not) for finite resources - health and body resources, financial resources, information or technological resources, emotional resources. I attend to how patient organization is embodied, sensed, and practised by those whose work moves the patient movement. How doings, makings, and feelings which manifest, manage, and maintain a patient organization make up multiple situated and inconsistent stories throughout the work of storytelling/listening. I propose to start understanding a patient movement by orienting oneself to its multiple chronotopes – time-space configurations which prompt specific ‘social genres’ (ethico- political accounts of a happening). Commencing with chronotopes allows me to stay with the practicalities of RuMSS maintenance performed by those with finite resources. And as well – to observe how maintenance work is being com-posed with the happenings, achievements, and strategies within the Russian patient movement at large. Grounded in empirical material from ethnographic doings within RuMSS and thinking along with feminist work on situated ethics and non-idealized, work- centered understanding of care, I speculate how chronic com-position work may offer a potential emancipation and pedagogy of care.
