Soutenance de thèse d'Alexandra Endaltseva

Alexandra Endaltseva a soutenu (à l'EHESS, en visioconférence, en raison des raisons sanitaires) sa thèse de doctorat, intitutlée

“Chronic Com-Position Work: Embodying patient organization and patient improvisation within Russian Multiple Sclerosis Society”

et préparée sous la co-direction de Isabelle Ville et de Sonja Jerak-Zuiderent, le 20 juin 2020, devant un jury composé de :

Madeleine Akrich, CSI, PSL-Mines ParisTech – Présidente du jury
Patrice Bourdelais, EHESS
Joseph Dumit, UC Davis – Rapporteur
Klasien Hortsman, Maastricht University – Rapporteure
Sonja Jerak-Zuiderent, Amsterdam University Medical Centres – Directrice de Thèse
Emilia Sanabria, CNRS/Cermes3
Isabelle Ville, CEMS, EHESS – Directrice de Thèse
 

Présentation de la thèse

Résumé/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.

Mots-clés/Keywords: patient organization, patient improvisation, embodied social movement, chronic com-position, care, Russian Federation, multiple sclerosis, invisible work, chronotope, patient movement.