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 (EuroSciVoc)
CORDIS classifies projects with EuroSciVoc, a multilingual taxonomy of fields of science, through a semi-automatic process based on NLP techniques. See: https://op.europa.eu/en/web/eu-vocabularies/euroscivoc.
CORDIS classifies projects with EuroSciVoc, a multilingual taxonomy of fields of science, through a semi-automatic process based on NLP techniques. See: https://op.europa.eu/en/web/eu-vocabularies/euroscivoc.
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Keywords
Project’s keywords as indicated by the project coordinator. Not to be confused with the EuroSciVoc taxonomy (Fields of science)
Project’s keywords as indicated by the project coordinator. Not to be confused with the EuroSciVoc taxonomy (Fields of science)
Programme(s)
Multi-annual funding programmes that define the EU’s priorities for research and innovation.
Multi-annual funding programmes that define the EU’s priorities for research and innovation.
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HORIZON.4.1 - Widening participation and spreading excellence
MAIN PROGRAMME
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HORIZON.4.1.5 - Fostering brain circulation of researchers and excellence initiatives
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Topic(s)
Calls for proposals are divided into topics. A topic defines a specific subject or area for which applicants can submit proposals. The description of a topic comprises its specific scope and the expected impact of the funded project.
Calls for proposals are divided into topics. A topic defines a specific subject or area for which applicants can submit proposals. The description of a topic comprises its specific scope and the expected impact of the funded project.
Funding Scheme
Funding scheme (or “Type of Action”) inside a programme with common features. It specifies: the scope of what is funded; the reimbursement rate; specific evaluation criteria to qualify for funding; and the use of simplified forms of costs like lump sums.
Funding scheme (or “Type of Action”) inside a programme with common features. It specifies: the scope of what is funded; the reimbursement rate; specific evaluation criteria to qualify for funding; and the use of simplified forms of costs like lump sums.
HORIZON-TMA-MSCA-PF-EF - HORIZON TMA MSCA Postdoctoral Fellowships - European Fellowships
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Call for proposal
Procedure for inviting applicants to submit project proposals, with the aim of receiving EU funding.
Procedure for inviting applicants to submit project proposals, with the aim of receiving EU funding.
(opens in new window) HORIZON-WIDERA-2022-TALENTS-04
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Net EU financial contribution. The sum of money that the participant receives, deducted by the EU contribution to its linked third party. It considers the distribution of the EU financial contribution between direct beneficiaries of the project and other types of participants, like third-party participants.
50137 Wroclaw
Poland
The total costs incurred by this organisation to participate in the project, including direct and indirect costs. This amount is a subset of the overall project budget.