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CDC, Can’t You See? Going to Work Is Killing Me

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Crowd standing in the street, a thicket of signs saying "We're fired up," with a central banner reading "ACT UP Shreveport, AIDS Coalition to Unleash Power"

The AIDS activism of ACT UP—with its rowdy direct action and informed policy advocacy—has much to teach us about centering people’s needs in the responses to the COVID pandemic.

If you visited the Center for Disease Control and Prevention website after hearing about their conflicting COVID safety guidance over the last few months, you might have learned that the agency’s headquarters in Atlanta has a museum. You can’t visit it right now, though: a big red notice on the top of the website states that the museum is closed out of “an abundance of caution” and based upon guidance of the CDC regarding social distancing and large gatherings. Earlier this year, the same agency released new guidelines that mandated people return to in-person work after five days if asymptomatic, with trusted public health figures rattling off talking points that echoed those of the likes of the CEO of Delta Airlines.

The new guidelines have caused outrage and stirred understandable confusion. The controversy around them has stoked a standoff between the CDC, politicians, and city officials around the country on the one hand, and unions, workers and new organizations like The People’s CDC on the other. Even Tony Fauci, the darling chief medical advisor of this pandemic, got on MSNBC in December to say that these guidelines were driven by the sheer fact that the economy would shut down if we actually kept to the existing frameworks. (He later reinforced the point on PBS in February saying that “people want to see a return to normality.”)

Federal-level policy guidelines that gamble with the health of the most vulnerable are nothing new. But the ability of everyday people collectively rising up to take care of each other and to influence federal actions for the benefit of all has huge historic precedent. 

At height of the AIDS crisis, the CDC and other state agencies were key targets of mass action from organizations like the AIDS Coalition to Unleash Power (ACT UP) for their complicity in preventable deaths, their inability to communicate with high-risk populations, and their unwillingness to build policy that listened to those most affected by their decisions. Rowdy, escalated direct action won better federal policy, and new communications strategies saved countless lives as AIDS activists developed guidelines for safer sex practices in conversation and in community with each other.

There’s a similar fight brewing today. As we emerge from the latest surge and see social and political conditions continue to deteriorate around us, working people need to identify clear demands and strategies to win that will enforce standards that keep the people safe as COVID-19 continues to change. By doing so, we can also lay the groundwork for building long-term power in our workplaces and communities that can create real fixes in our broken system of healthcare and all the other inequalities that the virus has exposed.

The CDC, ACT UP, and HIV/AIDS

ACT UP was formed in 1987 by those who saw HIV/AIDS ripping through their communities, were discriminated against by the government, and decided to take aggressive direct action to address the unfolding crisis. They employed a range of creative tactics, from teach-ins about medical issues to aggressive arrestable direct actions targeting public health agencies. These actions provided critical public education, awareness, and pressure at a time when scant direction was given by the government. 

When it became clear that certain opportunistic infections were showing up in women, but those symptoms were not reported by the CDC, many, like early AIDS activist Maxine Wolfe, learned about them in the widely distributed “Women and AIDS” Handbook and through various women’s caucuses in ACT UP chapters across the country. These coalitions fought to change the definition of AIDS and placed a target on the federal government’s back, demanding the CDC change the definition of AIDS to include cancer of the cervix and other things that were affecting women specifically.

From 1988 to 1992, people campaigned to make the CDC change their definition of AIDS, with chapters and allied organizations across the country hitting the streets, risking the arrest of hundreds, and running phone zaps and postcard campaigns, AIDS activists finally began to see victory: the CDC began to include symptoms that affected women specifically.

Two women, foreheads together, tender expressions. One wears a sash across her chest; the only word visible is "AIDS."
Two participants in the ACT UP march on the CDC, December 1990. Margie Edouard (left, in wheelchair) and Heidi Deming. Edouard was one of about 100 people arrested in the protest. Photo from the ACT UP collection at the Georgia State University Library.

These tactics hadn’t come out of nowhere, either. The Treatment & Data Committee, a specific committee within ACT UP, formed to map power dynamics within health agencies like the FDA and zero in on the key decision makers to speed up clinical trials for new medicine. This led to organized teach-ins and accessible, widely distributed handbooks that laid out their findings to spur mobilization for a historic direct action (‘SEIZE CONTROL OF THE FDA’) that led to 176 arrests and reverberations for decades. ACT UP eventually won some of the key demands they were making at the level of direct treatment. They included an expanded access to drugs, input in the trials for experimental solutions to the crisis, and other demands like the ones laid out in the National AIDS Treatment Research Agenda.

Political pressures on public health

Two years into the COVID-19 pandemic, it’s clear there is once again a political bottom line more important to the decisions made at the CDC than the health of the public. The messaging and politics of agencies like the CDC have shifted since early 2020 when COVID-19 first began its deadly march across the country. The agency has responded to competing pressures from the Trump and then the Biden Administrations, right-wing anti-vaccination zealots, and media outlets of various stripes. Underlying all is the struggle between capitalists’ push to continue making profit and the collective power of organized labor.

ACT UP taught us that we don’t need to wait to see the course decision-makers set behind closed doors. Organizing everyday people around concrete demands and effective collective action can change the standards of safety around COVID, just as activists did with AIDS, and leave the government with no choice but to provide a viable federal solution.

Airline CEOs are mandating workers go back to work despite still showing symptoms; data has emerged that show about 90% of meat-packing plants having COVID outbreaks in the first year of the pandemic; cities are locking out public school teachers for being concerned about their student’s safety, and outbreaks continue to rampage through prisons across the country.  When federal standards are set in the interest of the most powerful and least vulnerable, the powerless and vulnerable pay the price. If standards are set with proper input and design, everyone, regardless of differentiated risk, can make the most informed choices.

Safer sex, shame and stigma, and learning lessons

Before the HIV virus was identified as the cause of AIDS, there was a lot of speculation and many mistakes were made, both by individual epidemiologists and by agencies like the CDC. The lack of information worsened the increased stigmatization and homophobia that had begun to unravel in the ‘80s, and made staying safe more difficult for LGBT people.

Activists took things in their own hands. Michael Callen and Richard Berkowitz studied various AIDS origin theories and created resources that introduced a radically new approach to sex. How to Have Sex in An Epidemic: One Approach listed suggestions for “safer sex,” such as using a condom and limiting sexual partners. They tried to navigate the contradictions between containing a highly infectious virus that spread sexually and understanding that shaming people into not having sex was not going to work.

Similar tactics appeared in the early months of COVID in 2020. Activists distributed infographics, but it wasn’t systematic, and contradictory information floated around the internet and lived on even after new information came out contradicting old recommendations.

One of the major clashes among safer sex activists concerned with mitigating the spread of the virus focused on whether or not to close bathhouses (common places for gay men to have sex anonymously). Callen and Berkowitz were in favor of closing bathhouses, and the Gay Men’s Health Crisis was not. In New York City, the municipal administration aggressively followed through on this, but failed to provide any sort of alternate infrastructure for gay men to distribute condoms and educate one another about what a safer sex approach to the AIDS crisis could look like. 

“Safe sex” was a framework used by AIDS activists to mitigate the spread of the virus without sacrificing a central part of the emerging LGBT movement: free expression of sexual orientation and gender identity. Similarly, in conversations we have with coworkers, friends, family, and strangers, we should advocate for measures to mitigate the spread of COVID that do not threaten people’s safety nets.

We have to develop concrete practices that meet people where they’re at, using federal funding to safeguard existing institutions that need to remain open and public, and using those institutions as infrastructure to mitigate spread. The responsibility of COVID safety is not primarily an individual concern, but should be dealt with collectively, with the collaboration of key decision-makers.

We can and should find ways to come together, collectively, to articulate specific demands for workplace safety and community well-being.

From January 3 to February 28 in Chicago, patrons at restaurants, movie theaters, and other large gathering places were required to show proof of vaccination in order to enter. Staff, however, were exempt from the beginning, and now all restrictions have been lifted. The mayor played lip service to the federal guidelines, but provided no support towards workers themselves who deserve to feel as safe at work as the customers that rely on their service. With the low likelihood that stimulus checks, as a result of a failure of the government officials passing a reconciliation bill that truly answers to the current moment of multifaceted crisis, many workers working low-wage jobs will have to continue to risk exposure at work if it means putting another meal on the table for their families. And there will be contradictions that continue to arise when officials force us to make risk choices at a purely individual level, rather than from a state apparatus working to ensure the well-being of the working class as a whole.

The questions we should actually be asking need to look like “How can we make sure people are as safe as possible and making informed choices?” and “What resources can we use to meet people where they’re at, while not shaming them in to feeling like a terrible person after two years of trying to navigate an impossible situation?” and “What does it look like to respect that different people have different needs, boundaries, and ability to engage in ‘risky’ behavior while keeping the larger picture in mind?”

Collective demands for community well-being

When AIDS activists fought and won more adequate baseline policy standards from the CDC, it became easier to navigate the sorts of contradictions and tensions between personal responsibility, differentiated risk, and collective risk-taking. What was crucial to the better policy standards was having those most affected by the crises have a stake in the decision-making — through input on panels and participation in experimental drug trials, among other avenues.

We can and should find ways to come together, collectively, to articulate specific demands for workplace safety and community well-being that focus on creating standards that make it easier to determine individual risks that people are willing to take. That could look like the toolkits and demands being formed by groups like The People’s CDC. It could look like workers leveraging their newly won unions at Amazon and Starbucks to demand strong COVID safety precautions from employers that are enforced. It could look also look like established unions and mass organizations demanding access to decision-making panels where safety standards are being created by the CDC and other state agencies, which could lay the groundwork for future fights around reshaping the system of public health at large. 

As we break past a million deaths from this deadly virus in the U.S., the government’s top priority should be how to keep us the most safe. If rates of infection and hospitalization surge again in the future, and a return to full lockdown conditions seems necessary, the government is obligated not only to set proper guidelines, but also to ensure a sufficient and sustainable infrastructure exists to make it possible for people to have input in making the decisions for what that looks like. If a total lockdown proves not necessary or not possible, what sort of ways can we be in relationship with those in our social circles, our jobs, and the public at large? How can we do without losing the things that help us feel human and connected?

I ultimately decided to visit the CDC museum virtually. One of their centerpieces is a timeline highlighting all of their accomplishments. Funny enough, they seem to have forgotten the era-defining ACT UP protests at CDC headquarters. Movements of working people have always been the ones to make change whether or not our names make it in history. What the 99% will have against the corporations and the bosses is strength in numbers. Together, we’ll continue to find ways to take care of each other, and through this mutual care, will move governments to be more accountable to the masses. Just this week, as CDC guidelines for mask-wearing were struck down by a judge in Florida and mandates were lifted across the country, a new wave of anger has begun to emerge. Let’s seize it and build the future we need to see.

Featured image: ACT UP demonstrated at the National Institutes of Health to demand more research into HIV-AIDS treatments. Photo from the NIH History Office via Wikimedia Commons. Public Domain.