Inspired by the Council’s Rachel Tanur Memorial Prize for Visual Sociology, we ask prominent scholars to select a visual artifact of this time that will help future researchers understand the Covid-19 crisis. In this installment, Celeste Watkins-Hayes (incoming Collegiate Professor of Public Policy, professor of sociology, University of Michigan) spoke with Jonathan Hack (program officer, SSRC Anxieties of Democracy program) about the lessons learned from activists movements of the HIV/AIDS pandemic and how they can inform current responses to Covid-19.
Jonathan Hack (JH): Could you share why you selected this image?
Celeste Watkins-Hayes (CWH): First, it is important to highlight the larger context. The image comes from the International AIDS Society conference that takes place every other year. It is a global conference that brings together researchers, public health officials, healthcare and social service providers, policymakers, as well as people living with HIV and communities most affected by HIV/AIDS. It is truly a global gathering; in fact the exhibit hall is not called the exhibit hall. It’s called the “Global Village,” and there are all kinds of displays, performances, and demonstrations, really making it feel like “the town center.”
In the early years of the HIV epidemic, it was not unusual that a person attending the conference one year would not be there for the next gathering. AIDS was taking lives at an alarming rate. This was before we had antiretroviral therapy and medications. These conferences took on even greater significance because they represented an opportunity for people to give voice to what they thought needed to happen in the epidemic before they perished. Some of the most important historical moments in the epidemic took place during the International AIDS Conference.
There was much debate as to whether this year’s conference should be held in the United States, because many in the HIV community did not feel welcome entering the United States and worried that they would not be granted access. However, one of the key organizers, Cynthia Cary Grant [who is pictured], advocated very strongly to hold the conference in the United States. She felt that holding the conference in the United States would call attention to the realities of the HIV epidemic even in a highly resourced country like the United States. For Grant and others, it was about standing up and being counted, even in places where the politics might be hostile.
Then Covid-19 spread, and the International AIDS community needed to figure out, much like everyone else, how to collectively engage with each other, how to build community, in a virtual space. So certainly, much was lost. There’s no question. But nevertheless, we were able to carve out a virtual space for ourselves.
Coming back to the image, the idea that Cynthia expressed holds true for both HIV/AIDS and for Covid-19, which is that whenever we are faced with a major health crisis there are moments in which people put their bodies on the line and do all sorts of things for the greater good. They participate in political activism, they volunteer to be part of scientific research and clinical trials to test out treatments and vaccines on their own bodies, and they courageously share their stories. All of this moves the needle forward. This was seen with HIV, and similar actions are what will help us overcome the Covid-19 pandemic.
JH: What learning experiences can we take from some of the early activism around HIV/AIDS to inform our communal response to Covid-19?
CWH: I think the one of the first things to remember is there is global awareness around HIV and a shared recognition that all levels of government and all sectors of society have a role to play in ending the epidemic. But in the early days, HIV activists in the United States and other countries were pushing hard against very apathetic governments, much in the same way that we’re pushing for the federal government’s leadership to recognize the gravity of what we are facing and how messaging from the top is critically important. Much of what we are seeing now is an amplification of the dynamic we saw in the early 1980s around HIV/AIDS. The political motives might be slightly different, but the effect is the same: an epidemic that is allowed to fester because of misalignments between politics and public health.
So, it is important to remember in this Covid-19 moment that the gains made by the HIV community in fighting the HIV epidemic didn’t just happen. People fought hard: pushing political leaders; educating the public; and battling the stigma, apathy, and antipathy that were fueling the epidemic. They understood that treatment and vaccines would be game-changers, but the goal was also to expand access to healthcare and to make sure that we valued the lives of the most vulnerable. And some of our most valuable protocols and procedures for drug discovery and approval at the NIH, FDA, and other institutions are the result of lessons learned during the early days of the HIV epidemic.
A second parallel between the HIV epidemic and Covid-19 is that both have a crisis within a crisis. When we started to see the numbers in terms of racial and ethnic disparities related to Covid-19, it reminded many of us of the trends within HIV. With HIV, we failed to recognize how decades of limited access to healthcare, economic resources, education, and information within communities of color meant that they were already highly vulnerable prior to the epidemic, and our response once the disparities were known was not as aggressive as it should have been. Decades into the HIV epidemic, despite everything we have learned and the interventions we have developed, we see that the HIV epidemic still looks very different depending on the population we are talking about. We have made substantial progress, but we still have a ways to go in eliminating the crisis within the crisis. We are likely to see this with Covid-19 as well. The question becomes, at what point will we recognize that if we enter epidemics from different social positions and with different resources, it is inevitable that our fortunes within that epidemic will vary greatly unless we intervene. We navigate the same turbulent waters of an epidemic, but we are not all in the same boat.
This conversation was conducted on July 20, 2020. It has been edited for length and clarity.