Contested Conditions in the Wake of Covid-19: Relations between Autobiography, Media, and Illness

Información del proyecto

CONTESTED BIOS

Identificador del acuerdo de subvención: 101130866

DOI

10.3030/101130866

Proyecto finalizado el 24 Julio 2024

Fecha de la firma de la CE 16 Mayo 2023

Fecha de inicio 1 Septiembre 2024

Fecha de finalización 31 Agosto 2026

Financiado con arreglo a

• Widening participation and spreading excellence

Coste total

Sin datos

Aportación de la UE

€ 139 953,60

Coordinado por

UNIWERSYTET WROCLAWSKI
Poland

Descripción del proyecto

Cómo influyen las autobiografías y los nuevos medios en las políticas sobre enfermedades crónicas

Compartir historias personales de discriminación por motivos de salud puede ayudar a las comunidades afectadas dándoles voz. Sin embargo, es necesario comprender mejor la influencia de los medios de comunicación y la cultura en las políticas sobre las enfermedades crónicas. Enfermedades crónicas como el covid-19 persistente y la encefalomielitis miálgica suelen estar rodeadas de polémica, lo que conduce a la estigmatización y a una atención inadecuada. El equipo del proyecto CONTESTED BIOS, financiado con fondos europeos, analizará las formas autobiográficas asociadas a estas enfermedades crónicas. Este análisis abarcará tipos de medios y prácticas materiales emergentes, como la narración colectiva, las exposiciones virtuales y los microblogs artísticos publicados en Alemania y Estados Unidos entre 2015 y 2023. En el proyecto se intenta comprender cómo estas formas influyen en las políticas de las enfermedades crónicas y la discapacidad y cómo se ven afectadas por ellas.

Objetivo

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.

Ámbito científico (EuroSciVoc)

• humanidades

Palabras clave

• Medical humanities
• English
• German and Polish cultural studies
• contemporary autobiography
• stigmatized illness
• illness narratives as media practice

Programa(s)

• HORIZON.4.1 - Widening participation and spreading excellence PROGRAMA PRINCIPAL
  
• HORIZON.4.1.5 - Fostering brain circulation of researchers and excellence initiatives
  

Tema(s)

• HORIZON-WIDERA-2022-TALENTS-04-01 - Fostering balanced brain circulation – ERA Fellowships
  

Régimen de financiación

HORIZON-TMA-MSCA-PF-EF - HORIZON TMA MSCA Postdoctoral Fellowships - European Fellowships

Convocatoria de propuestas

HORIZON-WIDERA-2022-TALENTS-04

Coordinador

UNIWERSYTET WROCLAWSKI

• Aportación neta de la UEn: € 139 953,60
• Dirección: PL UNIWERSYTECKI 1 ; 50137 Wroclaw ; Polonia
• Región: Makroregion południowo-zachodni › Dolnośląskie › Miasto Wrocław
• Tipo de actividad: Higher or Secondary Education Establishments
• Coste total: Sin datos