Many artists with chronic illnesses or disabilities feared the worst when the pandemic started. Like those who are immunocompromised or have underlying conditions, accessing care and continuing to work would be tough. And it was. Some artists moved to remote areas to save money and protect themselves; others maintained strict quarantines in their homes.
But the creative juices never stopped flowing, at least not for Panteha Abareshi, whose first major solo exhibition opened online, with the Los Angeles Municipal Art Gallery.
“It was a massive, frantic crunch,” Abareshi, whose work pulls from a lifetime of experience with chronic pain, said about the three-month planning process.
Through videos, performances and sculptures, Abareshi examines the disabled body as a depersonalized object in the medical system. It’s a feeling now understood by more of the general public.
“Able-bodied people have never had to think about the politics of their bodies as it pertains to sickness,” said Abareshi, who is 21. “And now they want to experience that subjectivity.”
And, Abareshi said, “There is a real expectation by the public to find some superficial positivity within the disabled experience, a portrayal that follows notions of empowerment or emancipation.”
“People want that kind of message because it means they can stop being critical of their own relationships to illness,” Abareshi went on, even when living while sick is more complex.
As the public becomes more aware of chronic illness through the coronavirus’s lasting effects on the body, artists who focus on it, like Abareshi, are receiving more inquiries from cultural institutions that are interested in work commenting on the health system. Some of these artists have mixed feelings: happy for the opportunities but painfully aware of how many museums lack accessibility options.
In a normal year, Alex Dolores Salerno might not have had the opportunity to become an artist-in-residence at the Museum of Art and Design, in New York. But virtual programming opened the door, as organizers became more receptive to artists who often have to stay close to home.
Salerno has taught audiences about the history of artists who have worked from their beds. Salerno’s own work — sculptures designed from bed frames, linens and mattress toppers — explores interdependency and care. But the artist is still navigating how much to disclose about their disability.
“I think about this demand that marginalized groups have to give a diagnosis or explanation to prove their identities,” Salerno said. “Why are marginalized groups always the ones asked to provide the public with an education?”
A similar question had flicked through the mind of Sharona Franklin, who moved to a small border town in Canada to save money after the pandemic shut down businesses associated with her work. Later, several high-profile institutions came calling for her kaleidoscopic jelloid sculptures infused with medicinal herbs and filled with syringes — sculpted shrines based on her experience living with a degenerative disease.
“I’m working so much right now and hoping it will pay off,” she said.
Since last summer, she has been contacted for various opportunities: a solo exhibition for spring 2022, which would be her first at a major institution, at the List Visual Arts Center at the Massachusetts Institute of Technology; to have her work shown in a gallery in Brussels; and to participate in a group exhibition, which opened March 13, at the Remai Modern, in Saskatchewan, with artists whose work critiques the medical industry.
Such artists often find themselves explaining accessibility and how there is no one-size-fits-all situation, as well as navigating a system that wasn’t built for them. Some have created their own advocacy groups in the past year, like the artists behind the Sick in Quarters collective. Many have become impromptu consultants on disability rights, teaching well-intentioned curators how to talk about disease.
Amanda Cachia, a curator and lecturer at California State University San Marcos, said, “I’m pretty exhausted.” Since the pandemic started, she has received requests to speak with institutions about accessibility, including at the Munch Museum, in Norway, and the USC Pacific Asia Museum, in California.
“It’s not just how much labor is demanded of the artists’ bodies,” she tells her audiences, “but how curators communicate their ideas, needs and interests without language that’s offensive.”
Bethany Montagano, director of the USC Pacific Asia Museum, said frank conversations about disability have changed her institution’s direction.
“Museums need to be far more than A.D.A. compliant,” she said in a statement. “We are working as a staff to lay out strategic priorities, which involve planning programs and planning exhibitions that not only include but buoy the voices of sick and disabled artists.”
The museum is also “prioritizing actively acquiring works from sick and disabled artists.”
A spokeswoman for the Munch Museum said that Cachia’s talk was inspiring. The museum is planning a variety of new accessibility initiatives, including the creation of a diversity council and plans to translate a contemporary art exhibition into sensory experiences for audiences.
Among other institutions that are turning to disabled people for guidance is the Shed, which also created a disability council — on it, a range of people with different disabilities — to advise curators on accessibility for programming. Those types of discussions will help inform curation decisions, said Solana Chehtman, the organization’s director of civic programs. “We wanted to put access and artistry at the center,” Chehtman said, mentioning an ongoing digital commissioning series. “And I think this is a time to recognize what sick and disabled artists have made.”
Local governments are backing the efforts. New York City’s Department of Cultural Affairs says that it has invested $400,000 in the current fiscal year to support organizations that help artists, audiences and cultural workers with disabilities. Over the last three years, the agency has devoted $1.68 million for disability access and artistry.
“We are committed to fostering a cultural community that is accessible to all,” Gonzalo Casals, the cultural affairs commissioner, said in a statement. He added that the agency was working on being inclusive “by supporting and expanding disability inclusion within the buildings, programming, and hiring practices of our city’s cultural institutions.”
Last year, the Ford Foundation and the Andrew W. Mellon Foundation announced the Disability Futures fellowship, a joint initiative to provide 20 artists with $50,000 grants.
Emil Kang, the program director of arts and culture at the Mellon Foundation, said, “What we have already done is only a drop in the bucket.”
“We wanted to show the world that disabled artists are and have always been making work,” he said. “There just hasn’t been a national program like this before.”
Ezra Benus, an artist who also helps administer the fellowship, said, “The world is experiencing illness, so people have turned to us.”
“There is also pressure on sick and disabled people to create work only based on our illnesses, which can be difficult to navigate,” he added.
As artists are more engaged with cultural institutions, some are now coming prepared with access riders, which outline the terms of their engagement.
Christine Sun Kim, an artist who performed the national anthem in American Sign Language at the Super Bowl in 2020, is writing her own document for organizations working with deaf artists like herself, with resources and tip sheets.
The pandemic has presented its own challenges for Kim, who said she reduced her workload after attending virtual events on Zoom, where it was difficult to focus on the host and interpreter. “It’s just too much for me,” Kim said. “My deaf friends often FaceTime separately with their own interpreters when on Zoom.”
But she also sees an opportunity for institutions to start thinking broadly about accessibility.
“There has definitely been a shift in the United States where people are becoming more aware,” she said.
Whether or not more accommodating policies survive in the long-term, artists like Franklin feel confident their work will.
“Friends think the world is going to forget about us once people aren’t scared for their own lives,” she said. “But the art we make is going to stick around.”