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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. health care system, he says, it motivated him in a way he might not otherwise have been. By giving him a front-row seat to the “moral abomination” of the U.S. (Barkan and King had a second child, Willow, last year.)īut if Barkan’s diagnosis was unforeseeable, it also defined the trajectory of his life.
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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. The disease has already paralyzed him from the neck down, and at some point it will take his life. Then, out of the blue, Barkan was diagnosed with ALS, or Lou Gehrig’s disease. 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. In October 2016, he and his wife Rachael Scarborough King were just settling down. 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. “The answer,” Barkan says, “depends in large part on what we do in the coming days.” 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. Even those with good insurance can expect to pay thousands in deductibles and co-pays should they find themselves in the emergency room. And without insurance, people have every incentive to avoid medical care, lest they be saddled with potentially tens of thousands in hospital bills. 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.Īlready, 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. 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. “Out of this emergency, America will emerge a new nation,” he says. He tries once, then again, and after another minute of anxious silence, Barkan’s synthetic voice suddenly fills the air. The technology on Barkan’s computer that’s supposed to help him speak using his eye movements isn’t working.
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But for a few long minutes, the line is quiet. As COVID-19 sweeps across the country, triggering emergency prohibitions and thousands of hospitalizations, people are looking to Barkan for leadership. 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.