Project description
How autobiographies and new media impact chronic illness politics
Sharing personal stories of discrimination related to health conditions can support affected communities by giving them a voice. However, the influence of media and culture on chronic illness politics needs to be better understood. Chronic illnesses like long Covid and myalgic encephalomyelitis are often surrounded by controversy, leading to stigmatisation and inadequate care. The EU-funded CONTESTED BIOS project will analyse the autobiographical forms associated with these chronic conditions. This analysis will cover emerging media types and material practices, including collective storytelling, virtual exhibitions and artistic microblogs published in Germany and the US between 2015 and 2023. The project seeks to gain an understanding of how these forms both impact and are impacted by the politics of chronic illness and disability.
Objective
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.
Fields of science
Keywords
Programme(s)
Funding Scheme
HORIZON-TMA-MSCA-PF-EF - HORIZON TMA MSCA Postdoctoral Fellowships - European FellowshipsCoordinator
50137 Wroclaw
Poland