A terrifying new infectious disease encircles the globe, placing lives and livelihoods in peril. As the federal government largely ignores the growing threat and fumbles the response, citizens struggle to make sense of virological facts and epidemiological findings and translate them into workable strategies to manage crucial and intimate aspects of their everyday lives—and, perhaps, stay alive. The time: the 1980s, in the early years of the HIV/AIDS pandemic in the United States. As a graduate student then working on a dissertation about knowledge and politics in the AIDS epidemic, I first became familiar with analytical tools that, in my view, lend themselves to good use at the current moment.
As Andrew Lakoff has observed in his prescient book Unprepared: Global Health in a Time of Emergency, HIV/AIDS played a pivotal role in transforming the logic by which pandemics are apprehended as global events. The emergence of the AIDS epidemic punctured the convenient myth—at least in the global North— that rampant infectious disease was a concern of the past that modern medicine had gloriously transcended. Impelled by that epidemic, transnational bodies of experts sought to build “tacit regimes of knowledge and intervention” to avert the next health catastrophe—with limited success, to be sure (Lakoff 2017).Through the perspectives developed by scholars who study the production, circulation, and ramifications of knowledge, science, technology, and medicine, we can call attention to the important lessons from the HIV/AIDS pandemic for understanding the “politics of knowledge” in the new era of COVID-19.
In recent weeks, as I have observed the often fairly sophisticated analysis and critique on social media of the latest medical information and the interpretation of epidemiological projections and health statistics, I have been reminded of how AIDS activists helped to democratize health-related knowledge and encourage public engagement with biomedical facts and fact-making in ways we now take for granted (Epstein 1996). AIDS activists also permanently changed entrenched research practices. For example, top-tier medical journals actively prohibited early release of scientific information before publication until AIDS activists took them to task. Early release is now standard in health emergencies such as the current one (Apuzzo and Kirkpatrick 2020).
Of course, it is important to distinguish between challenging expertise and authority and undermining expert judgment altogether (Reich 2016). Much as we saw in the early years of the AIDS epidemic, essential questions now arise about the dynamics of widespread distrust of credentialed expertise (Eyal 2019)—whether manifested in the form of a president’s hunches about the efficacy of untested therapies or in the rise of populist activism against public health lockdowns. AIDS activists took a broad interest in unapproved therapies that, they hoped, might keep them alive. Yet their interventions in the domain of clinical trials reflected scrupulous self-education and sincere concerns with validity, reliability, safety, and efficacy, rather than whimsy or opportunistic endorsement of whatever seemed consistent with predetermined political stances.
A related concern is that posing challenges to conventional experts can align with an upswing in conspiratorial thinking. Various ideas are now making the rounds: unsubstantiated theories that the novel coronavirus was manufactured in a Chinese weapons lab or that the pandemic was planned by Bill Gates to benefit Big Pharma; or that the pandemic is caused by 5G cellular networks (Fisher 2020). These are all reminiscent of stories that circulated widely about HIV in the early years (Epstein 1996, Mackenzie 2013). Rather than dismiss conspiracy theorizing as irrational or marginal, sociologists of knowledge and science have emphasized the diversity of conspiracy cultures and have called for close study of how proponents of alternative knowledge claims draw boundaries around cultural identities while battling for epistemic authority (Harambam and Aupers 2015).
I close with one additional domain of investigation: the connections between knowledge, technologies, and embodied experience. Theories of “biocitizenship” describe the varied ways in which biological aspects of personhood provide a basis for political claims and for the assertion of rights or assumption of responsibilities (Heinemann 2015). In the AIDS epidemic, the advent of antibody testing in 1985 gave rise to a new social division between “positives” and “negatives” that cut across preexisting alignments according to sexuality, gender, and race. Coronavirus antibody testing will likely figure differently: a positive result will potentially signal immunity (rather than infectiousness), at least for a time—something that HIV antibodies fatefully fail to confer. Yet we can anticipate the possibility that, once again, a new technology will carve a social divide of great consequence. In this way, too, reminders from the past can orient us toward studying, in real time, the crucial dilemmas that follow the deployment of knowledge and technologies in the era of COVID-19.