“Epidemic Narratives: Data, Visualization, and the Mediation of Care”

This post is part of a series of reflections on the Center’s 2020–21 Series Epidemic // Endemic.

Reflections by Alexander Parry // posted 11/17/20

On November 13, 2020, the Johns Hopkins University Center for Medical Humanities and Social Medicine and the Sawyer Seminar on Precision and Uncertainty in a World of Data hosted their event “Epidemic Narratives: Data, Visualization, and the Mediation of Care.” Featuring Dr. Kim Gallon, Professor of History at Purdue University and the director of the COVID Black project, and Dr. Kirsten Ostherr, Professor of English at Rice University and the director of the Medical Futures Lab, the conversation explored how the data, messaging, and visuals of the COVID-19 pandemic have deepened existing structural inequalities. Public health experts and mainstream media outlets trying to represent the crisis have generally failed to humanize the Black, Native American, and low-income populations who have suffered most from the disease. Their efforts have also encouraged policymakers and the public to overemphasize technical solutions for the pandemic and individual responsibility for infection. Until statistics and visualizations properly capture the social dimensions of COVID-19, Dr. Gallon and Dr. Ostherr contend, they will not succeed as means to process the pandemic or to drive effective policy.

Dr. Gallon kicked off the event with her talk on the disproportionate impacts of COVID-19 on Black communities and the racialized silences of morbidity and mortality statistics. As public health research has repeatedly shown, the pandemic has fallen hardest on Black Americans with chronic ailments like diabetes, heart disease, hypertension, and asthma and inadequate access to medical care and other social services. Statistics and graphs of infection rates and deaths related to COVID-19 tend to neglect how structural factors contribute to racial disparities among health outcomes. The unequal distribution of the disease has even caused many Americans to hold the sick responsible for their own illnesses, ascribing their susceptibility to COVID-19 to poor diets, insufficient exercise, and other unhealthy “habits.” The effects of de facto housing segregation, poverty, and environmental racism have also carried over to the healthcare system itself, where Black physicians, nurses, and staff have suffered more casualties from the pandemic than their white peers. Although projects including Lost on the Frontline and Honoring Black Lives have tried to humanize COVID-19 data with detailed profiles of Black patients and healthcare workers lost to the pandemic, Dr. Gallon raised difficult questions about the extent to which these efforts have respected the privacy of Black bodies and instrumentalized their experiences for practical ends. Should experts and mass media continue to broadcast sickness, disability, and death within the Black community, Gallon asked, if these stories do not attract substantive assistance from government agencies, nonprofits, and the private sector?

Quantitative and qualitative descriptions of COVID-19 often flatten out the lives of those who have died from the disease, and Dr. Gallon described how her Homegoing Dataset project seeks to alter the form and purpose of narratives about the pandemic. Using obituaries, media profiles, and statistics, the Homegoing Dataset maps Black casualties of COVID-19 and underscores their personalities and social roles rather than their medical histories. According to Gallon, the project strives to preserve the “messiness” of its data and will provide the basis for an interactive digital memorial meant to help the country acknowledge and mourn the dead. At the same time, Gallon raised several dilemmas related to her own work: does connecting public health outcomes to race help or hinder policies like expanded testing, mask mandates, and direct payments to American families? Do maps of COVID-19 properly account for mobile and displaced populations? What limits, if any, should digital memorials place on using publicly-available data without the direct involvement of its subjects or their relatives? Representations of COVID-19 and its implications for Black communities have yet to fully resolve these concerns.

Dr. Ostherr continued the discussion with her presentation on technologically-mediated data and visualizations, which problematically characterize COVID-19 as a technoscientific problem with technoscientific solutions. From pictures of ventilators and vaccines to graphs of reported cases and deaths, many public narratives have privileged medical equipment over healthcare workers, downplayed the economic and cultural causes of the spread of COVID-19, and papered over the uncertainty and omissions of available data. Even more crucially, these accounts “erase human narratives of suffering” and reduce complex social problems to impersonal logistics. Citing the example of digital contact tracing, Ostherr documented how early efforts to replace face-to-face contact tracers with mobile applications failed because they eliminated crucial opportunities to clarify misconceptions, offer sympathy, and overcome medical distrust. Ostherr has accordingly called for scientists and public health practitioners to endorse “translational humanities” methods capable of situating diseases within their social contexts and producing cultural narratives about COVID-19 concerned with planning for the future rather than assigning blame.

The question-and-answer session led by Dr. Alexandre White, Assistant Professor of Sociology and the History of Medicine at Johns Hopkins, conveyed the cautious optimism with which Dr. Gallon and Dr. Ostherr have approached the problem of reconceptualizing statistical and visual representations of COVID-19. Ostherr, for example, summarized how public health messaging directed at the Black and Latino populations of Harris County, Texas, improved data collection and medical outcomes for its residents despite continued fears about contact tracers cooperating with Immigration and Customs Enforcement officials and local police. One participant relatedly asked whether statistics and stories about Black death, no matter how well intentioned, overlook the realities of Black survival and resistance. Responding to this question and another regarding stigma, Gallon and Ostherr reiterated how many powerful stakeholders have called for personal responsibility throughout the pandemic without allocating crucial resources to keep COVID-19 under control. To what extent do the data surrounding COVID-19 intentionally or inadvertently single out individuals without the political or economic authority to limit its spread? The stories we tell about the pandemic thus do far more than embody our values: these narratives shape the course of the disease and the damage left in its wake.

Alexander Parry is a doctoral candidate in the Department of the History of Medicine at Johns Hopkins University. You can find him on Twitter @AlexParryHSTM.