It’s a cool, clear Wednesday night in mid-March, and Ady Barkan is at home in Santa Barbara, Calif., hosting an emergency call with 3,200 supporters. As COVID-19 sweeps across the country, triggering emergency prohibitions and thousands of hospitalizations, people are looking to Barkan for leadership. But for a few long minutes, the line is quiet. The technology on Barkan’s computer that’s supposed to help him speak using his eye movements isn’t working. He tries once, then again, and after another minute of anxious silence, Barkan’s synthetic voice suddenly fills the air. “Out of this emergency, America will emerge a new nation,” he says. “But in what direction will we go?”
While the point of this call is to catalyze immediate action—to reach out to vulnerable people during the crisis and demand aid from Congress—these efforts are not divorced from Barkan’s unshakable long-term goal: passing Medicare for All. It is his hope that the COVID-19 pandemic, in all its hideous destruction, will expose the gaps in the fragmented American health care system.
Already, it’s clear that the system is not working: those who lost their health insurance when they lost their jobs are now facing a global health catastrophe with neither an income nor access to affordable health care. And without insurance, people have every incentive to avoid medical care, lest they be saddled with potentially tens of thousands in hospital bills. Even those with good insurance can expect to pay thousands in deductibles and co-pays should they find themselves in the emergency room. COVID-19 has not caused these problems, but it has shone the spotlight on them—which may, in some twisted way, Barkan says, offer his movement an opportunity.
When all this is over, Barkan asks, “Will we slide ever deeper into a nightmare of inequality, precarity and social alienation? Or will we use this crisis to begin to make the big structural changes that we need to build a more just and equitable society?” As he gets going, listeners post encouraging messages and emojis in the conference’s chat window.
“The answer,” Barkan says, “depends in large part on what we do in the coming days.”
The ability to pluck an opportunity from disaster—or at least to refuse to allow calamity to stand in the way of progress—is perhaps the defining characteristic of Barkan’s life. In October 2016, he and his wife Rachael Scarborough King were just settling down. He was working at the Center for Popular Democracy, she had secured a job as an English professor at University of California, Santa Barbara, and the two of them had a brand-new baby boy, Carl.
Then, out of the blue, Barkan was diagnosed with ALS, or Lou Gehrig’s disease. The disease has already paralyzed him from the neck down, and at some point it will take his life. His home is full of the cruelties and contradictions of this reality: a stocked bar cart in the corner of the kitchen is now half hidden under boxes of medical gloves; the accoutrements of his disease—feeding tubes and Clorox wipes—coexist among kids’ toys. (Barkan and King had a second child, Willow, last year.)
But if Barkan’s diagnosis was unforeseeable, it also defined the trajectory of his life. By giving him a front-row seat to the “moral abomination” of the U.S. health care system, he says, it motivated him in a way he might not otherwise have been. In the past 3½ years, he has weaponized his entire self—his mind, his story, his extraordinary personal challenges—to lobby and organize and advocate for Medicare for All. Sixteen years ago, when he met King at Columbia University, he was more of an “institutionalist liberal,” King tells me—a description that causes him to playfully raise an eyebrow: it’s clear that over the years Barkan’s politics has moved to the left. A decade ago, when Congress was debating the Affordable Care Act, Barkan had hoped for a “public option” that would let people choose a government insurance plan, but now that’s not enough. It’s got to be Medicare for All, he says: “Only a truly ambitious, radical departure from the status quo that replaces the exploitative for-profit model with one that guarantees health care as a right for all” will fix the problem.
Barkan’s first brush with fame came in December 2017, when a video of him confronting Senator Jeff Flake about the Republican tax bill went viral, earning him cable-news appearances, speaking engagements and a massive audience. By April 2018, he and Liz Jaff, the Democratic strategist who had filmed the encounter, launched his PAC, Be a Hero, with two goals: to defeat Republicans in Congress and to lobby for policies like Medicare for All. Since then, Barkan has become a celebrity of the progressive movement, touring 22 states ahead of the 2018 midterms, being arrested at least seven times on Capitol Hill, and preaching the gospel of universal single-payer to his 156,000 Twitter followers. In November, Barkan endorsed Elizabeth Warren, and when she dropped out, he threw his support behind Bernie Sanders.
Now that the Democratic Party appears to be coalescing around former Vice President Joe Biden, Barkan and his team at Be a Hero are regrouping. Barkan sees two opportunities.
The first is that the Democratic base–moderates and liberals alike—appears to support some version of Medicare for All, according to a survey Be a Hero commissioned in February. Exit polls in nearly every primary contest corroborate the finding: the majority of Democratic voters support some national government health plan. Reaching those voters is key, Barkan says, and he believes he’s well positioned to play unifier. Despite his politics, the core of Be a Hero’s base are moderate, older white women who were drawn into political activism after 2016, and joined Barkan’s cohort after the Brett Kavanaugh hearings. He understands where that demographic is coming from—and believes his story can convince them that Medicare for All is the right path forward.
The second opportunity is much more pressing: COVID-19. In the short term, Barkan’s Be a Hero group is working to get nurses and doctors the supplies they need, while pushing Congress to help working people weather the economic storm. But in the longer term, Barkan says this pandemic, in laying bare the need for universal government health care, may push forward solutions to the problems that Americans face every day. A crisis, after all, can be clarifying. According to a Morning Consult poll, 41% of Americans say the coronavirus outbreak makes them more likely to support government-run health care.
One evening in March, after yet another conference call, Barkan settles in with his family. King is playing with Willow, and Carl, who’s nearly 4 now, is home from day care. Before Barkan lost his voice, he recorded himself singing and playing guitar, and Carl now demands to hear the recordings at night, especially the Grateful Dead’s “Ripple.”
As the coronavirus outbreak worsens just outside their door, Barkan is scared but calm. Since he already uses a ventilator, contracting COVID-19 would be particularly dangerous for him, but he can’t entirely quarantine his family because he relies on six around-the-clock caregivers. He says his energy is focused on a bigger challenge: creating a society for Carl and Willow in which everyone can access the resources they need.
This appears in the April 06, 2020 issue of TIME.