Description du projet
Impact des autobiographies et des nouveaux médias sur les politiques relatives aux maladies chroniques
Le partage d’histoires personnelles de discrimination liée à des problèmes de santé est susceptible de soutenir les communautés touchées en leur donnant une voix. Cependant, l’influence des médias et de la culture sur les politiques relatives aux maladies chroniques doit être mieux comprise. Les maladies chroniques telles que la COVID longue et l’encéphalomyélite myalgique sont souvent entourées de controverse, ce qui entraîne une stigmatisation et des soins inadéquats. Le projet CONTESTED BIOS, financé par l’UE, analysera les formes autobiographiques associées à ces maladies chroniques. Cette étude couvrira les types de médias émergents et les pratiques matérielles, y compris les récits collectifs, les expositions virtuelles et les microblogs artistiques publiés en Allemagne et aux États-Unis entre 2015 et 2023. Le projet entend comprendre comment ces formes influencent et sont influencées par les politiques en matière de maladie chronique et de handicap.
Objectif
Autobiographical narratives about contested conditions have been published in Western media, which often highlight personal experiences of dismissal in health care and public. Scholarship in medical humanities argues that illness narratives can give voice to affected communities and provide evidence of the experience of illness and disability. This approach emphasizes the performative power of personal storytelling and the need to witness, but risks to promote a reading of autobiography as a social good rather than as a complex, mediated and cultural practice. Specifically, what is insufficiently accounted for, is the role of mediality and materiality in autobiographical practices and politics of chronic illness.
My project is a nuanced study of autobiographies of two chronic conditions: Long covid, the continuous illness after an infection with covid-19, and the chronic condition of myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) are contested and debated in polarized ways in contemporary biomedicine and culture, leading to stigmatization and reduced quality of care for those affected. I closely examine a selected number of emerging autobiographical forms such as collective storytelling, virtual exhibition, and artistic microblogs which have been published in Germany and in the US (2015–2023). By analyzing new strategies of communicating illness experience I ask how these media forms and material practices affect and are affected by politics of chronic illness and disability. I will integrate a wide variety of methodological approaches from media studies and concepts from disability studies and medical humanities to claim that closely examining mediated and material practices of autobiography opens overlooked relations between illness, media and politics that are obscured by the focus on representation. The project aims to reframe autobiography within questions of stigmatization and inequality and to reconsider how autobiography is conceptualized and approached in medical humanities more generally. Combined with innovative approaches of public engagement, the project seeks to impact the cultural bias against unexplained illness and to expand my transdisciplinary research expertise at the intersection of cultural studies and medicine.
Champ scientifique
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Régime de financement
HORIZON-TMA-MSCA-PF-EF - HORIZON TMA MSCA Postdoctoral Fellowships - European FellowshipsCoordinateur
50137 Wroclaw
Pologne