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Communication Dans Un Congrès Année : 2018

Inside a Patient Organization in Russia: ‘Not-so-Epic’ Story of Maintaining Patient Activism

Résumé

Intervention of patient organizations into the health(care) decision making in the 20th century has shaken (or attempts to do so in the different parts of the world) the long-preserved grounds of scientific credibility and the meaning of science and technology (Epstein, 1996); policy making (Moreira et al., 2014; Rabeharisoa et al., 2014); diagnostics and provision of care (Callon & Rabeharisoa, 2008; Dagiral & Peerbaye, 2016); and power distribution between patients and specialists (Akrich, 2008), to name a few. At the same time, such intervention has shaken the inner maintenance of patient organizations, including retention of members, resource base, and daily tasks. By focusing on the invisible processes of organizational maintenance, this presentation invites to regard a patient organization beyond a pressure group, a community of practice or a social institution and to pay attention to its ecology or network of care and knowledge. Grounding myself in the ethnographic material, collected by active participation in the life of Russian Multiple Sclerosis Society, I look at the infrastructure that powers the agency of patient organization in Russia. I tap into the processes of the invention of rehabilitation practices; optimization of scarce technical and material resources; retention of patient activists; trivial psychological support; tensions and friendships; finding and using physical space, and gender- and ability-based division of activist work and care work. Finally, I situate this infrastructure maintenance in Russian Federation, where patient organizations continue the search for identity shortly after their first official appearance along with transition times in the 1990s.
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Dates et versions

hal-04223992 , version 1 (30-09-2023)

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  • HAL Id : hal-04223992 , version 1

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Alexandra Endaltseva. Inside a Patient Organization in Russia: ‘Not-so-Epic’ Story of Maintaining Patient Activism. Annual Meeting of the Society for Social Studies of Science. Panel Life, biopolitics and techno-identities, Aug 2018, Sydney, Australia. ⟨hal-04223992⟩
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