Fight for our health: Activism in the face of health insurance precarity

The Affordable Care Act, 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. 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. Drawing on a discourse analysis of primary documents from the U.S. Department of Health and Human Services and illness narratives shared by the Service Employees International Union’s Fight For Our Health activist campaign, this article examines how the illness narrative is deployed here as a political call to action. I consider how this resistance effort frames the inevitability of illness and the emotional burdens of what I call ‘health insurance precarity,’ or the uncertainty that defines the experience of being uninsured, as a justification for positioning health activism as a cultural and political obligation shared by all.

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Notes

Operating as an organizational hub for progressive movements, SEIU, for example, launched Fight for $15, the national campaign to double the federal minimum wage and unionize restaurant employees. Former SEIU President Andrew Stern, who led the union from 1996 to 2000, was known to be a close ally of Obama. A corporatist union boss who courted businesses as key partners in health reform, Stern supported market-based approaches to reform and, controversially, was “openly dismissive” of the single-payer approach (Gottschalk 2007, p. 940).

Haunting this demonstration is the history of Martin Luther King, Jr./Charles Drew Medical center, a county general hospital in Los Angeles built in 1972 to deliver care to the underserved residents of the Watts and Willowbrook neighborhoods of the city. The hospital was plagued by “poor medical care for the poor” (Hunt and Ramon 2010, p. 283) and inadequate funding from the county. The hospital closed in 2006, and was the subject of an intense community and citywide battle to determine the fate of the facility and the access to care local residents desperately needed. The fundamental issue of access to care in the closure of King/Drew makes the choice of location for this demonstration at the Harbor-UCLA Medical Center, another county general hospital in Los Angeles, especially poignant. More can be read on this battle in Darnell Hunt and Ana-Christina Ramon’s “Killing ‘Killer King’: The Los Angeles Times and a ‘Troubled’ Hospital in the ‘Hood,” Black Los Angeles: American Dreams and Racial Realities (Darnell Hunt and Ana-Christina Ramon, Eds.).

According to the Kaiser Family Foundation (2017), the number of uninsured nonelderly Americans decreased from 44 million in 2013—the year just prior to when the major provisions of the ACA took effect—to fewer than 28 million at the end of 2016 (1).

The notion of the “pre-existing condition,” a bureaucratic designation that defines patienthood in terms set forth by the for-profit health insurance industry, is troubling in its ubiquity. Unfortunately, its use in common parlance is necessary as a shorthand for the millions of Americans saddled with this designation who must find the means to secure health benefits and the language to categorize themselves and others like them.

According to the instructions provided in the Story Gathering Toolkit, these surveys are to be printed double-sided, and stickers are to be printed on standard Avery 5160 labels. This standardization is illustrative of the affordances provided in the kit to enable a health activism that is, and can be read as, accessible to all, regardless of prior activist or organizing experience.

Vonnegut can be seen illustrating this theory, the subject of a failed graduate thesis, here: https://www.youtube.com/watch?v=oP3c1h8v2ZQ. His theory is also the subject of popular press accounts as well as an effort by researchers from the University of Vermont and the University of Adelaide to collect and classify computer-generated story arcs for close to 2000 pieces of fiction. The project works to track the emotional trajectory of these stories, using Mechanical Turk to code the emotional tone of common words as part of the classification. That work can be found here: https://arxiv.org/abs/1606.07772.

The anxiety around how we colloquially understand, codify, and legislate the role of the individual in maintaining their health has deep roots in cultural values around sovereignty, health policy documents like the Canadian Health Ministry’s 1974 Lalonde Report and the U.S. Surgeon General’s Healthy People report of 1979, and the contemporary effort to mandate that individuals eligible for Medicaid benefits sign personal responsibility contracts and satisfy employment requirements to receive their benefits.

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Acknowledgements

Thanks to Laurel Tamariz for providing insight into the story coordination process she manages for the FFOH campaign. This manuscript is comprised of original research material, and it is not under review elsewhere. I do not have any competing interests in this research.

Author information

Authors and Affiliations

1. Department of Communication Studies, University of Michigan-Ann Arbor, 5435 North Quad, 105 S. State Street, Ann Arbor, MI, 48109-1285, USA Beza Merid

1. Beza Merid