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Communication Dans Un Congrès Année : 2016

To care FOR and to care ABOUT: disability knowledge work and communication in the context of Russian Multiple Sclerosis society

Résumé

Alexandra Endaltseva presents today her preliminary results, and on a personal note mentions that she cares about this research very much. It is part of a larger current project that she is working on, that is also her own PhD research. She describes her research as a journey- and in honing in on one part of her study, where she has been collecting her data within the STS field: the interdisciplinary relationship between communication and social movements and disability studies is vital. In looking at how the Russian Multiple Sclerosis Society (RuMSS), this work highlights the role of communication, but also the importance of action, speaking to how the body can be affected by this condition. Under the category of care, she shares contextual knowledge and encourages this specific type of care activism. Through this, using some of the real, authentic conversations had with people- this research opens up a wholly honest dialogue, giving a voice to this area of study in order to improve lives, and inclusion. In each model (whether biomedical, or social), discourses of care become used a symbol. Referring to Bitzer (1992) there is the suggestion that imperfection may be marked by urgency, but this produces audience, or in other words, agents of change. Thus overall, leading to possible action. Activism in the knowledge about one’s one body and an action based on personal experience, speak to the critical realist approach to disability that Alexandra discusses within her research on the ‘School of multiple sclerosis in Russia’. In the context of the knowledge of the body and one’s social rights, the School’s intent is to initiate the societal shift from bio-beaurocratic understanding of disability and disease to a bio-socio approach. In aiming to construct health, (a state that is ever-changing) the school’s main aims revolve around talking, sharing, and showing the different facets of care and living with MS.
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Dates et versions

hal-04224000 , version 1 (01-10-2023)

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  • HAL Id : hal-04224000 , version 1

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Alexandra Endaltseva. To care FOR and to care ABOUT: disability knowledge work and communication in the context of Russian Multiple Sclerosis society. Discourses of Care: Care in Media, Medicine, and Society. Panel Activism, Advocacy, and Care, Sep 2016, Glasgow, United Kingdom. ⟨hal-04224000⟩
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