Ośrodek Badań Społecznych nad Chorobami Rzadkimi przy IFiS PAN serdecznie zaprasza na kolejne wirtualne seminarium z cyklu “Społeczeństwo i technologie wobec zdrowia i choroby”:
26.11.2021, godz. 16:00-17:30: Dr Stefan Reinsch (University Children’s Hospital Neuruppin & Centre of Health Service Research, Brandenburg Medical School – Theodor Fontane, Germany): Immigrants to health: The practices of everyday life with a rare chronic illness.
Abstract: Anthropologists have directed our attention to the struggles of marginalized individuals and vulnerable groups like those with a rare illness to gain greater public visibility of their therapeutic burden. Yet, only modest attention has been paid to the efforts put into achieving a visible normality through therapeutic practices or to the therapeutic work behind this apparent normality. This paper builds on a long-term anthropological study in collaboration with a group of young adults who have cystic fibrosis (CF), a rare genetic and life-shortening condition. Therapy can postpone disease progression, but it is burdensome, time-consuming, and can make illness visible. Over the last 15 years I explored how young people – who often do not readily appear to be sick – integrate therapy into their daily lives. Using a practice-theoretical approach inspired by Michel de Certeau, I examine the tactics they employ in carving out a habitable space in an ableist world. As both anthropologist and physician, I am interested in their creative struggle for well-being, care and with morality. I suggest that living with CF can be understood (and is described by some people with CF) like being an immigrant to the world of the healthy. It means managing a precarious normality since visibility of illness is resource that can be used to gain support and care, it also excludes them from the group of the healthy ones.
Link do spotkania na zoom:
Topic: RDSRC seminar
Time: Nov 26, 2021 04:00 PM Warsaw
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Meeting ID: 825 8202 4025
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