It wasn’t too long ago when artist Beatrice Adler-Bolton faced adversity for wearing a face mask in public. She was getting off the L train at First Avenue in Manhattan when a woman accosted her: “I was wearing my surgical mask because I’m super immunosuppressed and I can get sick—it could kill me,” Adler-Bolton recalled on her podcast. “A woman shoved me as we were getting out of the subway, turned and looked at me expecting me to yell at her, saw that I was wearing a mask, and just said, ‘Ew.’”
Stories like these have become all too familiar in a world upended by coronavirus. But in fact, Adler-Bolton recounted this almost two years ago on The Death Panel, a podcast that she co-hosts with artists Artie Vierkant and Vince Patti and public policy scholar Philip Rocco. Founded long before there was a general concern for public health, the health care system, ableism, and other associated issues, the podcast often talks about topics weeks before the mainstream media seems to be paying attention, and their conversations about potential outcomes are often prescient in nature. What’s discussed typically “develops exactly into what we were hoping it wouldn’t,” Adler-Bolton told ARTnews. Sometimes, “it’s even worse.”
Since Adler-Bolton shared that story on the inaugural episode, The Death Panel has become a cult hit in the art world. Artists Ed Atkins, Ivana Bašić, Hannah Black, Joshua Citarella, Simon Denny, Devin Kenny, Cole Lu, Jayson Musson, and Andrew Ross are among some of the devoted listeners. Topics discussed include universal health care, employer-sponsored insurance, and, more recently, strategies to stay safe during, as much as the societal implications of, the coronavirus pandemic. With the shortcomings of the current health care system—in particular the way it disadvantages communities of color—becoming increasingly apparent to many, The Death Panel has become crucial listening, within the art world and beyond.
“The Death Panel highlights bureaucratic barriers, especially for disabled people,” one listener, artist Carly Mandel, said. “As a disabled person, I’ve seen my experiences reflected and normalized. I can use the podcast as a resource to guide people to information, to help educate people in my life about my life.”
Health care is the guiding theme of the podcast, in part because it is a deeply personal topic for Adler-Bolton. She has a rare vascular autoimmune disease that causes the degeneration of her body’s myelin (the protective sheath around nerves) and small blood vessels. Since first presenting chronic symptoms in 2009 (doctors did not classify them as such earlier, as is often the case with many patients with chronic illnesses), her disease has also caused a type of lasting nerve damage called peripheral neuropathy, which can lead to endless, unexpected pain or numbness; her optic nerves have also been attacked by her immune system, resulting in lesions, which have gradually worsened her vision to the point of legal blindness.
Adler-Bolton moved to New York in 2008 to pursue a B.F.A. at the Cooper Union, with an emphasis in painting and sculpture. Soon after, her health began to worsen. Oral immunosuppressive medication initially helped to mitigate her earliest symptoms. But in 2011, there was a dramatic shift in her condition, necessitating intravenous immunoglobulin (IVIG) therapy. “That’s when it became clear that I was chronically ill, and I would need lifelong care,” Adler-Bolton said. She continued her education, at times conducting critiques from a hospital bed. While the Cooper Union administration and faculty were accommodating, she found the art world to be less so.
Prior to 2011, Alder-Bolton described her relationship to the health care system as relatively normal, similar to that of any healthy person with good insurance. Her new diagnosis, however, would require regular infusions to combat intensifying cell degeneration, and soon the costs became steep. “I needed ‘Medicare for All’ in 2011. That’s when I had to give up on everything that I thought my life could be,” Adler-Bolton said.
From there, Adler-Bolton faced a litany of issues affecting both her life and work. Even if the Affordable Care Act meant that many young adults could stay on their parents’ health care plan until age 26, Adler-Bolton knew she needed a long-term plan that would ensure reliable coverage, which led her through holding a slew of corporate jobs. Her health prevented her from applying for residencies or taking positions as an art handler or a studio assistant—opportunities commonly sought by artists where important connections can often be made—and migraines and pain in her muscles and joints kept her from creating art on a regular basis.
The bureaucratic labyrinth of a dysfunctional health care system didn’t help either. Shortly after several variants of vasculitis, which bore similarities to her autoimmune diseases, were added as a qualifying condition for Federal Social Security Disability Insurance in 2015, Adler-Bolton began her application process. She didn’t get approved until 2019, after having been first denied in 2017. The intervening years consisted of denials, appeals, case research, and countless administrative and legal meetings. With no more than 13 documented cases of her specific condition (MOG-IG Negative Chronic Relapsing Inflammatory Optic Neuropathy), there is little understanding about what her disease even is, let alone whether or not it could qualify for disability.
Disability lawyers refused to take on her case, she said, because they are only paid if they win. So, Adler-Bolton had to defend herself, working collaboratively with Vierkant (they have been partners since January 2015) to compile pertinent legal cases, statements from physicians, and over 1,300 pages of medical documentation that would convey the severity of her disability to an administrative law judge. “It was the most difficult intellectual problem we have ever faced,” Adler-Bolton said. Battling an ineffective system for Adler-Bolton’s disability insurance radicalized the couple, and served as a major impetus for starting The Death Panel in 2018.
Anecdotal stories can contextualize and humanize abstract policy, and Adler-Bolton’s personal narrative has been used to illustrate some of the podcast’s concerns. But The Death Panel often far exceeds Adler-Bolton’s experience, touching on interconnected issues relating to labor rights, debt accumulation, income inequality, housing and education reform, and criminal justice. Disentangling political rhetoric that often obscures or denigrates these issues, The Death Panel conveys the inefficiency of state and federal systems, which its hosts see as being specifically designed to disenfranchise and oppress people. Rocco, the podcast’s policy expert, said, “Unlike a lot of other leftist podcasts, The Death Panel earnestly tries to get into the guts of the capitalist state to identify modes of resistance.”
Just as The Death Panel identifies problems, it also offers solutions. Take Tim Faust’s appearance on “Medicare for All Week” on February 11. Faust breaks down how the U.S.’s current health care model—a combination of for-profit and public options—doesn’t structurally address other societal problems. With affordable public housing, clean water, quality education, safe labor conditions, and nutritious food, health care costs would decrease, as people are less susceptible to getting sick, Faust explains on the podcast. “Let’s not only articulate the end result but the means of getting there, through Single Payer,” Faust said.
Another part of The Death Panel’s goal is to help listeners decode the complex and confusing jargon used in medical documents. As Adler-Bolton told ARTnews, “The system is intentionally and intelligently designed to pay as few claims as possible.” In another episode, Vivian Negron, who has 40 years of experience in medical billing, claims that insurance companies have relied on automated telephone calls, shorter windows for submitting paperwork, and lengthy appeal processes to maximize their own profits. “They don’t want you to speak to a human being, who is going to tell you the truth,” Negron said. Such material can lend itself to inflamed discussions, but The Death Panel’s hosts avoid hot takes, and much of Negron’s episode is spent offering strategies for navigating these labyrinthine systems.
The hosts’ ambitions don’t end there, however. Adler-Bolton and Vierkant said that their long-term goal is to put the money brought in through a Patreon that supports the podcast toward creating a think tank of sorts that supports new research and the writing of the bills, similar to how members of ACT UP did so in the 1980s and 1990s at the height of the AIDS crisis. So far, they’ve created a community-focused Discord channel for listeners to have a virtual space for solidarity and coalition-building. They also published their first white paper, titled “Building a Pandemic-Ready Society for All,” on May 2.
“We could make all the money in the world on Patreon, and it would never pay for my medication at cost,” Adler-Bolton said. “What’s the point of getting famous and making money if you know that it can’t save you?”
“And,” Vierkant added, “it won’t save anyone else.”
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