The CARES Act passed in March 2020, and pandemic measures marked an unprecedented expansion of the social safety net in the U.S.—improving access to health care, food assistance, unemployment benefits, and housing stability. Those public services have expired one by one in the past months, and will end altogether on May 11 with President Biden’s decision to end the Public Health Emergency, as he declares the COVID-19 pandemic “over,” despite the ongoing realities of 200 deaths a day from COVID, the more than 36 million impacted by Long COVID in the U.S., and the continued isolation of those who recognize that everyone is vulnerable to COVID’s harms. As people are encouraged to accept high transmission levels as the “new normal,” public space is being made increasingly unsafe, especially for elderly, immunocompromised, and disabled people, and others who wish to avoid COVID infection. And while protestors voice their opposition on Public Health Twitter, this energy has yet to crystalize into a significant defense of the hard-won social safety net. But it still can.
During the Trump administration, the disability rights movement was instrumental in winning and then saving the Affordable Care Act, also known as Obamacare or the ACA. The disability rights movement won us disability protections and a floor for access needs guarantees in the form of Section 504 of the Rehabilitation Act, and later, the Americans with Disabilities Act (ADA). We argue that we can—and must—win continued public health measures to make public space accessible to people most impacted by, and vulnerable to, the pandemic. To do so, public health and disability justice organizers must take our work off Twitter and win back public space.
Getting into “the streets” for our collective health
Disability Rights have been won through collective action. In 1977, disabled people, including members of the Black Panther Party, participated in a nationwide protest, with the most notable event being the occupation of the Federal Building in San Francisco. This protest was the longest occupation of a U.S. public building and demanded enforceable regulations around Section 504 of the Rehabilitation Act, which governs disability discrimination and access. This includes “reasonable accommodations” for employment, education, housing, and other public services. The 504 sit-in was built on years of demonstrations, sit-ins, and coalition-building. The disability rights movement continued to gain momentum, leading to the passage of the Americans with Disabilities Act (ADA) in 1990. The ADA is separate legislation from Section 504 but was influenced by earlier activism, including dramatic direct actions such as the “Capitol Crawl,” which saw disabled people crawling up the 100 steps of the Capitol building in Washington, D.C., demanding the passage of the ADA.
Most recently, in the summer of 2017, when Republicans controlled Congress and the White House, disability justice and HIV activists saved the Affordable Care Act, forcing the GOP to reject their own proposals to gut the (however inadequate) health care program. Activists won through expertly coordinated and grassroots-funded lobbying efforts backed by robust public activation to make phone calls, write letters, and sign and deliver petitions. Creative and well-attended in-person actions earned robust press attention, and Republicans were put in front of cameras and forced to expose the reality of their policy proposals: Very rich people would make more money while millions of people would lose access to health care. Ultimately, the legislative efforts to “repeal and replace” the Affordable Care Act with something much worse failed. While the fight for good universal healthcare for all has not yet crystallized into a full victory, it’s constructive to highlight the ways the ACA was won, and defended.
On May 11, the Biden administration is set to repeal a current version of expanded (and still inadequate) health care access, this time in the form of the Public Health State of Emergency, a de facto expansion of the Affordable Care Act, and a hard-won victory.
The plan to shrink current healthcare access will have devastating consequences for everyone. Millions of people will lose expanded Medicaid coverage and telehealth options. COVID-related care including vaccines, treatment, and tests will no longer be guaranteed to be free at the point-of-care. The federal move to repeal the state of the emergency has also given cover to states and municipalities to proceed with their anti-public health policies, with state and city-specific implications from the repealing of San Francisco’s eviction moratorium to New York’s new move to encourage business owners to require individuals to unmask. Amid this transition to pre-COVID precarity, hospitals across the country are moving to repeal their own mask mandates, in many cases ignoring already insufficient CDC guidelines. The end of the Public Health State of Emergency would represent the same shift that Republicans attempted to make in 2017: Very rich people will be able to make more money while the rest of us are once again told “you’re on your own.”
It is time to defend our rights to access and to health. We might look to the battle to maintain the Affordable Care Act as a map for effective organizing around the expanded social safety net. Sit-Ins, civil disobedience which risks arrest, are famed tools of Disability and other Civil Rights movements – but the real risks of an airborne virus, being actively downplayed by mainstream media and the Federal Government, has changed the calculus of visible direct action. Instead, many have taken to Twitter to express our justified rage – but our emotions and expressions of solidarity are by and large algorithmically confined.
This moment calls on us to become more creative with what disruption, public pressure and protest look like. Indeed, spectacular protest has always relied on, and in part concealed, behind the scenes and less visible, and often gendered work of organizing. We can build on those counter-histories of mutual support and disruption to win back public space. But to do so, we have to take our energy, grief, outrage, and organizing efforts beyond Twitter.
A (very) brief history of Public Health and COVID Twitter
Since the beginning of the pandemic, Twitter has operated as something of a mutual aid space. People from around the globe shared their experiences with each other and gave advice for handling sickness, isolation, and grief. The COVID Tracking Project, an entirely volunteer effort, tracked the virus and communicated epidemiological patterns to the public and to policymakers. And, when the Biden administration ushered in their “pandemic of the unvaccinated/pretend the pandemic is over” strategy in Spring 2022, COVID Twitter crystallized into a space of active dissent and sharing of information. On Twitter, we learned that we needed “Layers of Protection” (The Swiss Cheese Model) in order to protect ourselves and each other—masks, ventilation, testing, tracing quarantine, and isolation supported by paid sick leave. We learned specifics about each layer: that 3M Aura N95 masks fit most people best, how to measure and respond to CO2 levels, and how to build DIY air purifiers to remove virus particles from the air, while we agitate for meaningful structural changes and public investments in indoor air cleaning and ventilation infrastructure.
Twitter is also a primary space of connectivity between people who had been directly harmed by the virus including people living with Long COVID and families grieving losses that the government continues to fail to appropriately memorialize. With connectivity came nascent organizing efforts of groups aimed at fostering solidarity, solace, and action. The value of Twitter is undeniable, but we must also see clearly its limitations.
Limitations of Twitter
The things that have made Twitter useful for information-sharing among those who are still actively trying to avoid COVID are exactly the same things that make it bad for organizing: Algorithms show us the people we want to see. Correspondingly, algorithms show our messages only to others already in our virtual “community.” So that even if a post reaches thousands of likes and retweets, it will still only be seen by those who more or less share our views.
Content and structure can be disengaging
In some cases, Twitter has become a space of almost nihilistic lament. Certainly, the normalization of mass death and disablement is cause for despair, but because of Twitter’s algorithmic structure, when we lament, only people curated to see pandemic-related content will see it. This deepens the sense of isolation. We may ask, “Why don’t my other friends understand what’s happening?” The answer, of course, is that they aren’t seeing COVID-related discourse on (or off of) Twitter.
DM groups are not formatted for organizing
The way DM groups are structured limits their utility. 1) One can’t easily search in messages; 2) there’s no way to directly reply to a previous message, limiting meaningful exchanges; and 3) message chats are “like”-able which means that they are subject to being written in a way that elicits reactions rather than engagement. Groups created to organize can become a place for “burns,” gotcha moments, and outright fighting, rather than a discussion about strategy and tactics.
Even before blue checks could be bought and Twitter personnel resigned en mass, dangerous misinformation and fascist propaganda circulated widely on the site. Now, with fascists at the helm influencing algorithms, policies, and enforcement, any potential utility for consequential Left engagement is further hamstrung.
Distracts from other work
Twitter has been a useful space for academics and public health professionals to share their expertise. Epidemiologists and infectious disease researchers put their published (or pre-printed) research out for people to see. And scientists could fact-check one another, explaining possible holes and suggesting directions for future research, in real-time, and often in words that made sense to “lay people.” But within that milieu, Twitter has also become a space for self-promotion. DM groups formed with the intention of addressing pandemic problems can easily become spaces for individuals to encourage “retweets” of their own content rather than spaces where we engage in debate about what we might actually do together.
Furthermore, Twitter’s algorithms mean that accounts gain followers by subtweeting or engaging in often aggressive debate on influencer’s threads: this pattern focuses our attention on fighting with and sometimes then amplifying the voice of the opposition. As we spend more and more energy growing accounts and “trolling” the opposition, we spend less and less time making meaningful connections, voicing our demands, and creating positive change.
To win public health, we must win back public space
The Biden administration’s vaccine-only strategy and its latest move to end the Public Health State of Emergency attempts to push those of us aware of and particularly susceptible to COVID’s persistent harms out of the public space. We cannot allow that to happen. We must win the policies necessary to make public spaces—schools, hospitals, workplaces, and transport—accessible to the most high-risk people; and, since Long COVID impacts people in unpredictable patterns, to prevent further mass disablement. In that effort, Twitter is only a limited tool for education, information-sharing, and connecting: it cannot be our primary organizing home. We must take our connections to platforms (Zoom, Jitsi, Signal, WhatsApp, a phone call) where we can actually discuss, strategize, and act. The good news is that some groups, many of which were involved in the ACA fight, are already doing exactly this and winning.
Senior and Disability Action, Mask Mandate New York, Boston Families for COVID Safety, Massachusetts Coalition for Health Equity, Me Action, University of California’s Justice Coalition, and UMichigan’s Graduate Employee Union, and others provide great examples for us to follow. They do letter campaigns and turn people out to offer public comment on things like mask mandates, public funding for ventilation upgrades and maintenance, and preserving online access to public meetings (this pandemic-prompted accessibility was a huge victory for and by disability justice organizers). They coordinate remote phone-banking actions. They fight for COVID-safety in union contracts. Their in-person demonstrations are designed to be COVID-safer, and they include online options to make actions accessible to the most vulnerable people. These groups and others have seen wins: like ensuring good air quality in schools in Illinois, extending the hospital mask mandate in Western Washington State, keeping masks in Oakland public buildings, bringing masks back in Boston public schools following the winter holiday break, and organizing a hybrid masked May 12 demonstration urging the government to take action on ME/CFS, Long COVID, and chronic post-viral illness.
Much of this work has been coordinated entirely virtually. Contrary to the “get-back-to-work” mantra, we can work together, dream, create, and make an impact even if we are not physically in the same space. As Leah Lakshmi Piepzna Samarasinha reminds us, disabled people have been coordinating online since the inception of the Internet. This can start with finding just one other person, in your workplace or school, in a community or political group, and supporting one another while you explain the necessity of protecting us all, especially the most vulnerable people in our community, while we fight for social transformation more broadly.
There’s a lot to do. We need to build mutual aid spaces to address people’s practical needs with mask distribution campaigns and popular education. We need to fight for mask mandates, ventilation upgrades, and remote options at school board meetings, in our workplaces, and at city council hearings. We need to encourage the non-Covid-focused groups we work with to make meetings, conferences, and social events COVID-safer to ensure that everyone in our communities can participate. We need to ensure that the supports provided through the Public Health Emergency are codified through legislation prior to their being dismantled.
And when we win, we can share on Twitter to combat nihilism there and to move other Twitter users to action (after which we should promptly log off before the algorithmic logic sucks us back in). But, more importantly, we should tell the stories of our wins off the platform, sharing the stories with other activated groups, with the press, and at our (metaphorical) dining room tables.
Get off Twitter
Twitter, like other social media platforms, can be a useful space for connection and information sharing. But if we want to fight back against the horrifying status quo, to win back public space, and to oppose the largest potential withdrawal of government funding since the Republicans tried and failed to repeal the ACA, we have to make real wins, in actual spaces in the world. We need to get off Twitter.
Thanks to Pantea Javidan for your helpful comments on this piece.
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Mary Jirmanus Saba is a disabled geographer, filmmaker, and social theorist.
Zoey Thill is an immunocompromised family medicine physician.
They met on Twitter and are now members of the People’s CDC.