As art projects go, “My Dearest Friends” is difficult to imagine happening 20 or even 10 years ago.
It has a simple premise: telling the stories of the disabled in the midst of the COVID-19 pandemic. But those stories, told via Instagram account and podcast and with tenderly illustrated, black-and-white drawings, aren’t just a testament to their subjects. They’re an art exhibit thriving amid quarantine, entirely online, while COVID-19 has largely kept museums shuttered.
The project is helmed by DisArt, a Grand Rapids nonprofit that promotes art and events by or about disabled persons in West Michigan. You’ll probably remember the organization from last fall, when it was set to host a troupe of drag performers with Down syndrome. Peter Meijer, the local candidate for Congress, owned the venue where the show was planned and declined to host it — sparking a national discussion about disabled persons’ identities and agency.
“My Dearest Friends” has not garnered the same kind of press, but it’s a project with similar stakes, asking an audience to ponder the experiences and value of disabled people. At the center of the project is Oaklee Thiele, an Interlochen-educated artist who draws the artwork, which accompanies submitted stories.
The project began in March, born out of Thiele and DisArt’s recognition that amid the COVID-19 pandemic’s sudden, radical shifts in daily living, people with disabilities were being forgotten. It takes its name from a poem Thiele wrote about the disabled community.
“I just remember feeling very distressed and upset, because I had been reading so many news articles about how people were saying this pandemic was no big deal, because only the sick and disabled were going to die from it,” said Thiele, who has post-traumatic stress disorder and relies on a service dog to navigate the symptoms. “It kind of felt like they just didn’t care about disabled lives — they were ready to toss us aside.”
“It kind of felt like they just didn’t care about disabled lives — they were ready to toss us aside.”
In the early months of the coronavirus crisis — and to some extent, still today — the lives of those most susceptible to the disease have been at the center of political debate. At its core, that discussion is about how to balance death against jobs and businesses.
“Herd immunity, protect the economy, and if that means some pensioners die, too bad,” a senior adviser to the British prime minister, Dominic Cummings, reportedly said in private earlier this year (he has denied saying it). For disabled persons, the equation is deeply unsettling. For many, these are their lives at stake — not an abstract idea to be balanced against the stock market.
The project has generated podcasts, images and stories spanning months. At first, many were squarely focused on the pandemic, though more have taken on racial politics as protests against police violence have erupted in cities around the country. The effect is one of expansive storytelling, documenting the pandemic and a turbulent spring and summer.
“This was the price of a haircut before the pandemic: $30.00,” reads the text of one image in the project. “This is the price of a haircut during a pandemic: The life of a chronically ill individual.”
“I’m not sure I’ll be able to go to college in the fall like I planned,” reads another, accompanied by a person in a wheelchair and a university building — with twin columns flanking the doors — far off in the distance.
“My Dearest Friends,” reads another, “I’m sorry for all the hoarders, buying out all the things you actually need to survive.”
Jill Vyn and Chris Smit, directors with DisArt, hope that the project can help change the way disabled people are typically understood — in one pernicious example, as heroes struggling against the weight of their disabilities.
“I think what’s problematic is that it’s very one-dimensional, and it only allows disabled people to inspire without actually being active participants in the community,” Smit said. “Over the years, when disabled people are talked about, it is in fact that we’re talked about without being talked to.”
This gets to the heart of what DisArt is all about, and what “My Dearest Friends” can do — to add dimension to the common understanding of disabled persons. Vyn sums up the experience as a fight not against a disability, but to be seen.
“The fight to be known that disabled people have always been fighting,” she said. “To be known and to be felt and to be invited into the cultural playground of life.”