With long COVID health risks, Chicago organizations create safe spaces, events for vulnerable communities
This March marked five years since COVID-19 was declared a pandemic by the World Health Organization.
Amid the weight of collective grief and unprecedented change, most were eager to "return to normal" when restrictions were lifted and the Biden administration ended the national emergency response.
However, many people have not been able to return to pre-pandemic life. They either already had a disability or chronic illness, or were disabled by COVID. Others still do not want to risk contracting the virus or developing long COVID. They have remained isolated and feel abandoned.
In response to a lack of government policy or support, grassroots organizations in the Chicago area have built a growing community support network, forming spaces for safer events and sharing resources.
Chicago's Clean Air Club was the first organization in the U.S. to create a rental system to distribute free air purifiers to artists, touring musicians and organizers. Using their model, there are now over 32 "clean air" organizations across the country and in Australia.
Other groups like Collective Air and Chicago Mask Bloc distribute free masks and rapid tests. Many of these groups also collaborate with event planners, venues, vendors and organizers.
"Lots of people have felt pushed out of community spaces by COVID," Keith Kohn said, founder of Save the Night Chicago Productions, a volunteer collective that puts on mask-required events across Chicagoland.
From concerts to comedy shows, Kohn said their events are an alternative to "mainstream nightlife with no precautions."
"Live music is essential, performing is essential, these experiences are an essential part of existing in a city like Chicago," he said.
All Save the Night Events are mask-required with HEPA air purifiers in the space, provided by Clean Air Club. Kohn said he founded the collective as a "foot in the door" to reassert all people's right to access public spaces with a "baseline of risk" that can be consented to.
"Maintaining a level of safety for your own body, whoever you may be, should not come at the cost of being able to access these experiences," Kohn said.
They prioritize wheelchair-accessible locations, provide a video walkthrough of the space beforehand on social media and livestream all their shows.
One of the DIY spaces they collaborate with the most is Susan's Applehole in McKinley Park. Right now, they are the only DIY space in Chicago that requires masks.
"That makes us a vital space for those who need non-life-threatening environments to experience live music and community. True inclusivity means prioritizing disability at every level because oppression creates disability. ," Drew Ashby, who runs and books the shows at Susan's Applehole said.
"Accessibility, in general, is a disappearing issue, and disabled people are underrepresented in our culture because they are disappeared because they cannot access a lot of spaces," said Kohn.
Save the Night's tagline is "What benefits the most disabled among us benefits all of us."
Kohn has unofficially declared Chicago as the "COVID-conscious capital of America."
With a "wealth of collectives, resources, and culture, Chicago is the closest to establishing a baseline of community life in year 5 of the pandemic," he wrote on Instagram.
Another community organization, Parallel Play, hosts in-person and virtual events for disabled and COVID-conscious LGBTQIA+ people.
Anna De Ocampo Kain founded the organization after planning her 30th birthday party at Ray Gun in Andersonville.
"I wanted to have a birthday gathering that I could invite my father, who had cancer, to and invite all my people and for everyone to feel comfortable and safe," she said.
The mask-required party went so well that the store manager asked them to plan more COVID-safer events. Kain picked four more dates, and "Dilly Dallys" were born: "mask required queer centered disability justice and liberation minded gatherings."
All of their mask-required events have sold out, including a dance party they are co-hosting with Mutualism this Sunday in Irving Park. From crafting nights, variety shows, and open mics to a garden drag show, the focus of Parallel Play events is on joy and rest.
"The joy and rest of this community was just so deeply needed, and people have been so isolated for so long, and also so deeply pathologized by their loved ones around them. I think many of us had given up hope that other people like us were out there," said Kain.
They also host supply drives, mutual aid, and PPE distributions. With their growing popularity and community, the need to expand was clear. Now they have a board of directors and have nonprofit status.
"Virtually everyone who's putting their time into this and creating these spaces for our community is disabled or chronically ill. So, doing this at a sustainable pace for everybody is also really important," she said.
Kain's goal is to compensate the workers for their labor and resources. To this end, they have launched a 2025 campaign and have an anonymous donor matching donations.
Their events are also livestreamed and have a flourishing "virtual third space" on their Discord server, led by their Vice President Erica Deloach.
Hundreds of people are active on the server, which allows many who are homebound or not able to attend in-person events to gather in community.
"We host events both in person and virtually because a huge part of our community is folks who are not able to make it in person all the time. It's not always accessible to them, no matter what the venue looks like. We must be connected to people at home," she said.
"Having masked events and accessible, safe spaces is vital for people who are immunocompromised or disabled, but I would argue that is smart for everyone," said Dr. Katrine Wallace, an epidemiologist with the University of Illinois at Chicago. "We have had a myriad of respiratory viruses and bacterial infections spreading in the city this season, with high rates of outpatient visits and hospitalizations for these illnesses. The same mitigations that prevent COVID-19 will also prevent flu, step throat, bacterial pneumonia, etc."
Parallel Play also helps other organizations host events that are COVID-safer.
"We've been partnering with organizations that are already hosting events, asking them to do a mask-required version, and providing them with an air purifier and tests," said Kain.
As of March 2025, over 1.2 million people have died from the virus in the United States, including over 43,000 deaths in Illinois, according to the CDC.
A household survey found that at least 6% or 18 million people in the U.S. had experienced long COVID or a post-COVID condition, but data has not been updated since 2024.
According to Dr. Wallace, experts estimate between 3-30% of people who have had COVID-19 experience long COVID.
"The reason for the wide range in prevalence is because published studies vary with respect to the patient populations, definitions of symptoms, and timing of assessments, how long is long," she said.
A new study from the University of Southhampton also found that nearly one in 10 people are unsure if they have long COVID. Researchers found that stigma and self-doubt contributed to people not getting checked out. The condition also is not easily diagnosable, with no single test and over 200 symptoms. Long COVID is a multi-systemic chronic illness that can be debilitating and impact a person's quality of life.
Since the pandemic, there has also been an increase in disability cases, according to the U.S. Bureau of Labor Statistics.
According to the Chicago Department of Public Health, even a minor case of COVID can result in long COVID.
March is also long COVID awareness month, and Clean Air Club is redistributing all of its donations this month to people living with long COVID.
"It impacts each person's life differently," they wrote on Instagram. "By centering organizations founded by people with LC, and listening to the stories told by people with LC themselves, we can all better understand this chronic illness and advocate for treatment, support, and awareness."
