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Worlding, Writing, Illness Narratives as Health Activism: Telling Stories a...

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Wilder House

5811 S Kenwood Avenue

Chicago, IL 60637

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The Affordable Care Act (ACA), which expanded health insurance coverage to millions of Americans and federally mandated the provision of health insurance to individuals with “pre-existing conditions,” is a politically divisive law facing an ongoing ‘repeal and replace’ effort in Congress and the courts. As patients, caregivers, and health activists fight to resist the repeal of the ACA, they are sharing intimate illness narratives in an effort to frame the repeal effort as a looting of their insurance benefits and an attack on the investment in equity and justice they say the ACA represents. One such effort emerges from the Service Employees International Union (SEIU), a left-leaning labor union that organizes around a number of social justice issues. SEIU’s “Fight For Our Health” campaign calls on patients and caregivers to share intimate accounts of how the threat of repeal fosters what I call “health insurance precarity.” These narratives, shared in person during protest actions and online by the campaign, address these accounts to legislators and the public at large, situating the resolution of this precarity as a social, rather than individual, concern.

This health activism campaign raises questions about how patients at risk of losing health insurance coverage make claims to biological citizenship and social belonging. What are the affective experiences of health insurance precarity? How does the campaign marshal these experiences to demand access to care and promote collective social action? Drawing on a discourse analysis of primary documents from the U.S. Department of Health and Human Services (HHS) and illness narratives shared through this campaign, I will discuss these questions and consider how these narratives function within the current health media landscape.

ABOUT BEZA MERID

Beza Merid (Ph.D., New York University) is an LSA Collegiate Fellow in the Department of Communication Studies at the University of Michigan-Ann Arbor, where he researches the cultural and political dimensions of illness. In particular, his scholarship examines how experiences of patienthood are mediated in the contemporary health media landscape, how patients and caregivers find ways to survive when adequate health insurance is inaccessible, and the persistence of racial disparities in heart disease and stroke.

Merid is currently working on his first book project, which examines how stand-up comedy and stand-up comedians participate in the production of biomedical knowledge, and gathering material for his second book project, which examines how patients and caregivers participate in knowledge production about racial disparities in heart disease and stroke.

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Wilder House

5811 S Kenwood Avenue

Chicago, IL 60637

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