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Ady Barkan Is Running Out of Time to Speak

As his ALS intensifies, the prominent single-payer activist is finding new ways to influence the politics of health care.

Ady Barkan in his Santa Barbara home in September. (Rozette Rago/The New York Times/Redux)

It’s a typically perfect day in Santa Barbara, endless blue sky above the mountains and warm sun on the skin. Ady Barkan’s house, set off one of those quaint California streets where the power lines weave themselves around the palm trees, looks like a perfect place for a young family to live. It radiates happiness, a place of contentment and a peaceful life; hummingbirds can be spotted flitting about, drinking the nectar of purple flowers. The street is still and empty in the middle of the day, but it’s easy to imagine the neighborhood kids taking over as the afternoon arrives—the little front yards filling up with the rowdy laughter of the young, freed from adult restrictions for a time. One of those children lives at this house: Barkan’s toddler, Carl. But Carl’s father cannot join in the fun, or even hold him in his arms. Barkan was diagnosed with ALS just four months into Carl’s life. The disease is killing him.

Over the past three years, Barkan has lost control of his body—struggling to run, then struggling to walk, then confined to a wheelchair, finally unable to move his arms. In September, Barkan had a tracheostomy, a surgical procedure that inserted a tube into his windpipe, which allowed him to breathe using a ventilator, and thus stay alive longer. There was a cost, however: The procedure robbed him of his ability to eat or speak. He now speaks using a computer that tracks his eye movements. ALS, he told me during our interview last week, is “the story of things becoming impossible.” The surgery has only delayed the inevitable; ALS is a relentless disease with no cure.

Barkan is the silent, steady center of an ever-spinning swirl of noisy activism. “Seriously, it’s like Grand Central Terminal in here,” he said of his often-busy living room. While I was there, I also met two of his caregivers, his assistant Aiyana, his wife Rachael, and a documentary filmmaker with the Democracy Alliance, who filmed Barkan reading a statement to camera. This was apparently a typically busy day in his household. I asked him if it was difficult to manage such a full schedule of activism while also living with his disease; he said it “doesn’t always feel that way.” That activism, he said, “has given me a real sense of purpose, and has me focused on things I still can impact and control.” He nevertheless noted he has an “entire team” of helpers at the Be a Hero PAC, the organization he founded last year to defeat Republicans, like senators Susan Collins and Mitch McConnell, at the ballot box. He credits his five “exceptional” caregivers, to whom he is “totally dependent and indebted,” for keeping him “alive and comfortable, and able to work.”

I sent Barkan’s team my questions in advance, to allow him the time to write out his answers. Had I asked them on the spot, it would have taken all day for him to type them out with his eye movements. But even deprived of his ability to speak, he still sought out moments for spontaneous conversation, at one point inquiring of me what I thought UK Labour leader Jeremy Corbyn should be doing differently. The night before our meeting, I had told his team that I would have to miss an event they’d planned at the University of California at Santa Barbara because of a tenacious migraine. Barkan made a point at our meeting of asking me how I was doing. If you ever want to feel humbled, have a guy who can’t speak, who’s in the clutches of a deadly ailment, ask you how your migraine is.

Barkan’s house is full of painful reminders of the life he and his family should have lived, a future stolen from them by this disease: travel guidebooks on the bookshelves; stacks of toys and books for his toddler. The most visceral reminder of all is his wife, Rachael King, who is due to give birth to their second child soon. It feels maudlin, almost obscene, to write or even think about a stranger’s death in such a way, but Barkan has never been shy about talking about his death. He puts his illness—which he wrote about in his memoir, Eyes To The Wind—and the awful fact of what’s to come, to good use, advocating for Medicare for All. In an interview with The New York Times last month, Barkan told the paper: “The way that I have tried to make meaning out of my ALS is to turn it into a weapon for struggle, so that it becomes more than merely tragedy.”

One of the questions I most wanted Barkan to answer was on the public option, which is quickly becoming the Sensible Beltway Alternative to single-payer, and why he supports Medicare for All instead. Barkan wasn’t always a Medicare for All activist. In the past, he said, he “probably agreed with people who thought a policy that ambitious just wasn’t gonna happen.” Now, however, he said that he “truly believes it’s the only way forward.” To the argument that a public option would be easier to pass, he pointed to the power of insurance and pharmaceutical companies: “It’s not like the powerful industries will just let a public option slide through, so either one will be a fight.” If we are to defeat this power, he said, we need “a truly enormous grassroots movement, and that only exists for Medicare for All. No one is gonna get arrested for the Public Option Choice Act of 2021.” Barkan knows a little about being arrested for activism: He’s been arrested at the U.S. Capitol at least seven times.

This question came up in Barkan’s most recent project, the Uncovered video series, in which Barkan interviewed almost all the Democratic presidential candidates. The series demonstrated that there need be no choice between policy literacy and emotional advocacy; one flows naturally from the other. In his interview with Cory Booker, for example, Barkan pressed the New Jersey senator on his support for a public option over Medicare for All and argued that grassroots “enthusiasm mainly exists for Medicare for All,” and that “people aren’t gonna march or engage in civil disobedience in support of a public option.”

This isn’t the conversation that the periodic primary debates have engendered. There, the yawning needs of ordinary people, and the loud calls to action, are silenced by the well-heeled moderators, the space cleared for another pat conversation about how health care reform will be paid for, and the virtues of plans that come cheap. Barkan’s series of interviews, by contrast, tapped real emotion: Several of the candidates he interviewed were reduced to tears during the proceedings. Without Barkan’s activism—and, frankly, the way his tragic situation amplifies it—we would never have heard the debate over health care approach this tenor.

One candidate hasn’t appeared in Barkan’s series: The frontrunner, Joe Biden. “I try not to take it personally,” said Barkan, noting that Biden has avoided other major appearances: “I think fundamentally they fear what will happen when they let the candidate off script, out of the in-house recording studio for a second.” It’s hard to disagree. Biden’s previous musings on healthcare in this campaign have included him repeatedly asserting his plan would include thousand-dollar co-pays, and attacking Bernie Sanders’s Medicare for All plans with baffling phrases like “a deductible in the paycheck,” always delivered with enough vigor and at a loud enough volume to hopefully convince the audience that he knows what he’s talking about. It’s hard to imagine Biden’s preferred manner of speaking, all in bumper sticker–ready declaratives, not failing him in conversation with Barkan, who nevertheless holds out hope that Biden will change his mind. The former vice president, Barkan said, “has such a powerful story to share about his own family’s experiences with health care.”

One of Barkan’s five care workers, Izzy, was on duty during our interview. Barkan lives through more discomfort in any given moment than most healthy people would experience on a Greyhound bus trip from Idaho to Pennsylvania. Izzy does her best to minimize that discomfort. He can no longer breathe by himself, instead relying on a ventilator hooked up to the tube in his throat. He can no longer eat; I watched Izzy feed him lunch by pushing several syringes full of liquified food into a tube in his stomach. I watched as she used a suction tube to clear fluids from his throat, which made his whole body shake. If he needed her when she had left the room, she would literally run back to care for him. She is the kind of caregiver that anyone would want at their side at times of medical stress.

I talked to Izzy about her role in Barkan’s life, and her career in what is one of the fastest-growing, yet difficult and chronically underpaid, lines of work. She works for Barkan three or four days a week, in shifts of 10 to 12 hours—but “if we’re short-staffed, Ady will ask me and I’ll stay overnight or I’ll cover a shift.” Barkan is her second ALS patient, and she’s still “learning on the go”; her work with Barkan was her introduction to caring for tracheostomy patients. She said she’s also learning about the movement for single-payer health care, and finds herself “inspired” by it. “When he was like, we need to go knock on doors,” she said, “I was like, yeah, we definitely do need to do something like that.” She said that she’s seen up close what happens when insurance coverage falls short of a client’s needs. In one instance, she recalled a client whose insurance failed to approve the use of critical medical equipment until their disease progressed beyond the point where the equipment in question could no longer help.

Barkan in October, post-tracheostomy.
Be a Hero Fund

All of the routinely difficult aspects of care work are made more challenging by Barkan’s inability to speak, grunt, or gesticulate. Barkan’s computer allows him to communicate, but with some difficulty. It’s often simply impractical for him to make the effort. At other times, the communication barrier makes it impossible to convey clear instructions. Izzy will often take a trial and error approach instead, watching Barkan’s slightest gestures—a tilt of the head or a twitch of an eyebrow—to answer questions: Does he need her to fix his computer? Does he want a pillow on his lap or not? Does he need his feet moving up or down?

At one point during my visit, Barkan’s aide, Aiyana, had to pull out a laminated sheet with the letters of the alphabet on it, making her inquiry by painstakingly reading them aloud and watching to see when Barkan raised his eyebrows. Eventually, his needs became clear: He needed his computer screen to be tilted down. We take for granted how normal human conversation works, how complicated it can be, and how we deploy a myriad of verbal and nonverbal cues help us through the process. For Barkan and his caregivers, every urgent need takes an exasperatingly long time to resolve.

Time is the crucial resource he now lacks. The need to bargain for precious days led him to choose to have the tracheostomy surgery. “I wanted to have as much time with my family as possible,” he said. The surgery will extend his life—but it’s a trade-off. Since the surgery, he has “a lot less time in the day ... to write or read the news, or think, because the care work is now so much more involved, requiring constantly cleaning the tubes to avoid infections. So it’s good, in that I will have more time with my family and breathing is easier, but it’s far from perfect.”

His family does not lack for one other crucial resource: money. Barkan said he has “wealthy supporters” who help cover the $20,000 he currently spends on his care each month. That’s $240,000 a year, or four times the median household income. (It’s not just his care that causes them problems: He told me that their insurer had recently told them his wife would need to find a new OB-GYN, since theirs would no longer be in their network, as of the beginning of November. She is due to give birth November 15.) As Barkan pointed out, “that’s not an option available to most people. It’s why ALS patients here simply die early or go bankrupt instead,” whereas in Japan, he notes, it’s “fully covered by the country’s national health care policy, and it’s why ALS patients live so much longer there.”

Examples like that are a frightening demonstration of why Barkan’s advocacy is so powerful: Americans who could be alive are dead now, silenced by the policy decisions we have made together. We could cover long-term care, but we don’t. Medicaid has a complicated set of requirements for who is eligible for long-term care coverage, one that’s led some couples to forsake their marriage vows or live apart from one another, all in the hopes of lowering their assets in order to maintain or regain the eligibility. Barkan’s life and work demonstrates the horror that disease can wreak upon the lives of families that should be able to live together in peace. It loudly questions the logic of putting sick people through the extra hell and torment of dealing with insurance companies.

Ady Barkan teaches you what a voice really is. It’s not simply the vibrations of air pushed through vocal cords; it’s the force of a unique perspective matched with the moral urgency of a just demand. And Barkan, his speech stolen from him, is perhaps the most powerful voice in the fight to fundamentally transform our health care system into something more fundamentally equitable; a living, and dying, example of why Medicare for All is necessary, and why our current system fails so many people. It is possible that years from now, those who struggle under the savages of the status quo will count themselves fortunate that he lent his voice, loudly and clearly, on their behalf. The question is whether the presidential candidates who heard his story and who cried at his side can can find the courage to speak as well.