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'screaming into the ether': the anti-response to covid-19
on collective myopia & who’s left behind
More than three years after the start of the COVID-19 pandemic, Alicia’s life remains drastically altered: she checks wastewater data daily and reads medical studies in her free time, and she’s had to make new friends, cut out family members and leave her job.
With mask mandates wiped out entirely, Alicia — who has an autoimmune disease and at greater risk of serious illness and death were she to contract COVID — still doesn’t go out to eat or travel, and now she doesn’t even feel safe going to the hospital for doctor’s appointments.
“I’m in a position where everyone else was in 2020, yet there are no protections anymore,” Alicia, who lives in Kansas and whose last name I’m not using to protect her privacy, told me in a Zoom interview. “At the beginning [of the pandemic] it was scary, but at least we had protections in place.”
Despite the ballooning of different variants in the last two years, the general feeling toward COVID now is one of weariness and resignation: those who had wanted a vaccine had gotten one and those who hadn’t, didn’t believe in a pandemic anyway. By September 2022, President Joe Biden was boasting the pandemic was over. That sense of finality was consecrated in April when the COVID-19 national public health emergency ended in May, loosening more restrictions.
The United States has moved on from the pandemic. But it has left many others like Alicia behind, forcing them to become their own experts.
Brittany, who lives in Minnesota, continues to mask indoors fastidiously and also keeps an eye on the wastewater data, which doesn’t require any test taking or reporting at all to get an accurate assessment of the transmission levels, as a way to calculate risk.
While she is not immunocompromised, she does have other disabilities and said she feels more solidarity with medically vulnerable people as her continued vigilance regarding COVID alienates her from the general public.
“It is hard,” Brittany, who I am also referring to by first name only for privacy reasons, said. “Sometimes I feel like I’m screaming into the ether, the void of, ‘No one wants to listen to me.’”
“We are doing all of those things as disabled and chronically ill people because we have to, but we shouldn’t have to be doing any of it.”
In many ways, the community has turned inward.
JD Davids co-founded Long COVID Justice, an advocacy group focusing on building the power of chronically ill and disabled people, in 2020.
The organization’s goal is to get the necessary research, treatment and support to people with long COVID and strengthen education and prevention efforts, Davids said.
Through resources such as a guide for considering whether an event needs to be, or should be, onsite rather than offering a virtual option or imposing a mask requirement, the organization offers moral grounding, prompting people to notice who is missing when such precautions aren’t available.
Before contracting long COVID, Davids was already living with chronic illness, and said that his added experience as a trans person receiving gender-affirming health care means he spends a lot of time looking at bureaucracy and power and strategizing how to get the resources he needs.
A well-meaning person might assume that more is being done to address disabled people’s concerns, but Davids said there is nothing: the extent of the U.S. Centers for Disease Control and Prevention’s advice to medically vulnerable people is to figure out what they will do when they contract COVID – it’s now seen as inevitable rather than preventable.
“We are doing all of those things as disabled and chronically ill people because we have to, but we shouldn’t have to be doing any of it,” he said.
The government’s messaging on COVID precautions reinforces that everything is optional and that disabled people “don’t really matter,” Davids said, sending them the message that for the foreseeable future, they cannot exist in society.
“It’s not just that nothing is happening, it’s that the wrong things are happening,” he said.
Taylor Lorenz, a columnist at the Washington Post and friend of the newsletter, said most people who are still talking about COVID and sharing accurate information are the ones with the most to lose – disabled people and disability justice organizations – as well as scientists, researchers and advocacy groups. Pockets of people on Twitter and Substack sharing studies, testimonials, frustrations.
The mainstream media’s reporting on COVID, Lorenz described, is running into a “classic disinformation problem,” the very same playbook for which has been used to coordinate and tout mistruths about transgender people and abortion.
Lorenz is immunocompromised and has continued to spread medical studies, testimonials and other pandemic-related information on her Twitter page. Lorenz said she also tries to serve as an advocate for medically vulnerable people in the Los Angeles area who do not have the platform she does.
Though it makes her unpopular – Lorenz was briefly banned from Twitter in December and since then said the algorithm buries her content – she said more people need to start speaking up in order for any change to happen, amplify the voices of disabled people and practice what they preach in terms of community care.
“If you are totally comfortable writing off the deaths of a million people and not even mourning it and not even acknowledging the thousands of deaths a week still happening from COVID,” she said. “It’s horrifying, and I think the way that society is devaluing life right now is going to have horrible, far-reaching consequences.”
Davids said he’s noticed that, just as people tried to limit the definition of AIDS – thereby restricting access to care and resources – people are now trying to similarly limit the definition of what counts as long COVID. And just as with HIV/AIDS, COVID advocacy groups also run the risk of prioritizing gains for white people rather than marginalized communities, Davids said.
Yet the burden of all this advocacy largely falls on the very same people who are most susceptible to disease.
“People with HIV should not be responsible for people staying HIV negative, and people with long COVID should not be responsible for doing all that’s been either ignored or subject to misinformation about COVID transmission, how to stop it and why it matters,” Davids said.
“‘Other people will die, but not me. Other people will become disabled, but not me.’”
It's difficult for the people still mindful of the pandemic to form connections with others — for Brittany, online community has been helpful; it gives her hope knowing other people are still being vigilant about COVID, but said sometimes she can’t reconcile that with the wider public’s apathy.
Alicia found through Twitter a community of people who take COVID seriously, and said that she is in a group chat which holds Zooms every week to talk and connect. She’s also met COVID-conscious people in her area through a site called covidmeetups.com and had safe, masked hangouts outside.
Remaining COVID-conscious in a world that has moved on also affects Alicia’s work. She said she had to quit her first job post-college because they refused her accommodations for her autoimmune condition, and that even though she is now working elsewhere, it is still stressful knowing she is putting herself at risk to go into work every day.
However, after she switched positions, she joined the faculty and staff council on disability inclusion at the university she works at and decided to take action to make masks more accessible to students and faculty who want them. Alicia acquired 4,800 free K-N95 masks from a nonprofit called Project N-95 and is now delivering masks to people across the campus who request them.
“I just want to make sure that people are getting masks, and I wish they were free for everyone.
I wish the government would keep the free N-95 program they were doing, but I hope this has a positive impact and can help people in my community,” Alicia said.
Davids said on the whole, though, the people who still care have been abandoned in incomprehensible ways – an echo of the beginning of HIV. Then, at least, he said advocates fought and achieved change, developed things like support groups and won funding to build out the services they offered.
But advocates for people with long COVID haven’t gotten any chances to expand their offerings or the funding to do so, Davids said. Now, when people get in touch with their local government to find support and resources following a bout of COVID, there isn’t much to refer them to.
For Lorenz, this myopia is easily explained: “I think a lot of people are deeply ableist and they truly believe ‘other people will die, but not me. Other people will become disabled, but not me.’ And that’s extremely selfish,” she said.
For more information on the continuation of the COVID pandemic:
The People’s CDC, which rounds up COVID information in its weekly “COVID weather report” updates and grounds its work in public health principles, and updated scientific literature. (The People’s CDC did not respond to my request for an interview.)
Death Panel, a twice-weekly podcast about the political economy of health. Two of the hosts are disability justice advocates Beatrice Adler-Bolton and Artie Vierkant, the authors of “Health Communism,” a book that has also been recommended as a good resource examining capitalism’s threat to public health.
A better roundup of academic sources and a wealth of other information, like where to find masks, is on the Substack newsletter OK Doomer.
Clarification: an earlier version of this story lacked specificity about the differences in resources available to people with HIV/AIDS vs. people with long COVID. It has since been revised.