Many artists with chronic illnesses or disabilities feared the worst when the pandemic began. As with people with weakened immune systems or underlying diseases, it would be difficult to get access to care and keep working. 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 show opened online with the Los Angeles Municipal Art Gallery.
“It was a massive, hectic crisis,” Abareshi, whose work stems from a lifelong experience with chronic pain, said of the three-month planning process.
Abareshi uses videos, performances and sculptures to examine the disabled body as a depersonalized object in the medical system. It’s a feeling that is now being understood by more of the public.
“People with disabilities have never had to think about their body’s politics when it comes to illness,” said 21-year-old Abareshi. “And now they want to experience this subjectivity.”
And Abareshi said, “There is a real expectation of the public to find superficial positivity in the disabled experience, a representation that follows notions of empowerment or emancipation.”
“People want that kind of message because they can stop criticizing their own relationships with illness,” Abareshi continued, even though life is more complex when sick.
As the public becomes aware of chronic diseases from the ongoing effects of the coronavirus on the body, artists who focus on it, like Abareshi, are receiving more requests from cultural institutions interested in commenting on the health system. Some of these artists have mixed feelings: They are excited about the possibilities, but are painfully aware of how many museums have no access.
In a normal year, Alex Dolores Salerno may not have had the opportunity to become an artist-in-residence at the Museum of Art and Design in New York. However, virtual programming opened the door as organizers became more receptive to artists who often have to stay close to their home.
Salerno taught the audience the history of the artists who worked from their beds. Salerno’s own work – sculptures made from bed frames, bed linen and mattress toppers – examines mutual dependency and care. But the artist is still navigating how much to reveal about his disability.
“I am thinking about this requirement that marginalized groups have to provide a diagnosis or explanation to prove their identity,” Salerno said. “Why are marginalized groups always being asked to provide education to the public?”
A similar question had crossed her mind to Sharona Franklin, who had moved to a small border town in Canada to save money after the pandemic shut down work-related businesses. Later, several high profile institutions claimed their kaleidoscopic jelloid sculptures, infused with medicinal herbs and filled with syringes – sculpted shrines based on their experiences with a degenerative disease.
“I’m working so hard right now and I hope it pays off,” she said.
Since last summer, she has been contacted on a number of occasions: a solo show for the spring of 2022, which would be her first at a major institution at the List Visual Arts Center of the Massachusetts Institute of Technology; to have their work shown in a gallery in Brussels; and participate in a group show that opened at Remai Modern, Saskatchewan on March 13, featuring artists whose work the medical industry has criticized.
Such artists often explain accessibility and how there is no uniform situation, and navigate a system that was not designed for them. Some established their own interest groups last year, like the artists behind the collective Sick in Quarters. Lots have become ad-hoc advisors on disability rights, teaching well-intentioned curators how to talk about illness.
Amanda Cachia, curator and lecturer at California State University in San Marcos, said, “I’m pretty exhausted.” Since the pandemic began, she has received requests to speak to institutions about accessibility, including the Munch Museum in Norway and USC Pacific Asia Museum in California.
“It’s not just how much work is required of the artists’ bodies,” she tells her audience, “but how curators communicate their ideas, needs, and interests without using offensive language.”
Bethany Montagano, director of the USC Pacific Asia Museum, said open discussions about disabilities had changed the direction of her institution.
“Museums need to be far more than ADA compliant,” she said in a statement. “We work as employees to set strategic priorities, including planning programs and planning exhibitions, that not only engage, but promote, the voices of sick and disabled artists.”
The museum also attaches importance to “actively acquiring works by sick and handicapped artists”.
A spokeswoman for the Munch Museum said Cachia’s talk was inspiring. The museum is planning a number of new accessibility initiatives, including the creation of a Diversity Council, and plans to turn an exhibition of contemporary art into sensory experiences for the public.
Among other institutions that turn to disabled people for advice is the shed, which has also set up a disability council – subsequently a number of people with different disabilities – to advise the curators on accessibility for programming. These types of discussions will help guide curation decisions, said Solana Chehtman, the organization’s director of civic programs. “We wanted to put access and art first,” said Chehtman, referring to an ongoing series of digital startups. “And I think this is a time to see what sick and disabled artists have made.”
Local governments support the effort. The New York Ministry of Culture said it has invested US $ 400,000 in the current fiscal year to support organizations that help artists, audiences and cultural workers with disabilities. Over the past three years, the agency has allocated $ 1.68 million for disability access and artistic work.
“We are committed to a cultural community that is accessible to all,” said Gonzalo Casals, the commissioner for cultural affairs, in a statement. He added that the agency was working to be inclusive “by supporting and expanding the inclusion of disabilities in buildings, programming and recruitment practices of our city’s cultural institutions”.
Last year, the Ford Foundation and the Andrew W. Mellon Foundation announced the Disability Futures Scholarship, a joint initiative to provide US $ 50,000 in scholarships to 20 artists.
Emil Kang, program director for arts and culture at the Mellon Foundation, said, “What we’ve already done is just a drop in the ocean.”
“We wanted to show the world that disabled artists are work and have always done,” he said. “There has never been a national program like this before.”
Ezra Benus, an artist who is also helping with the administration of the scholarship, said, “The world suffers from disease, that’s why people turned to us.”
“There is also pressure on sick and disabled people to create work based only on our diseases, which can be difficult to navigate,” he added.
As artists become more concerned with cultural institutions, some are now being prepared with access drivers outlining the terms of their engagement.
Christine Sun Kim, an artist who performed the National Anthem in American Sign Language at the 2020 Super Bowl, is writing her own document for organizations that work with deaf artists like yourself with resources and tips.
The pandemic presented Kim with challenges of its own. She said she reduced her workload after attending virtual events on Zoom that made it difficult to focus on the presenter and interpreter. “It’s just too much for me,” said Kim. “My deaf friends often have FaceTime separately with their own interpreters when they’re on zoom.”
But she also sees the possibility for institutions to deal comprehensively with 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 run, artists like Franklin are confident that their work will.
“Friends believe that the world will forget us when people are no longer afraid for their own lives,” she said. “But the art we make will remain.”