Ady Barkan has a terminal illness and can barely speak. That hasn't stopped him from using his voice — and his ailing body — to fight for a progressive agenda
The last few times Ady Barkan got arrested in the U.S. Capitol building, the routine had a few new twists. Officers no longer handcuffed him, since he had lost nearly all his capacity for movement. They just put a bracelet on one of his wrists to show he was in custody.
Ady Barkan and wife Rachael King, an English professor, met as undergraduates at Columbia College, photographed in their home in Santa Barbara, CA in March of this year. | Nancy Pastor for Politico Magazine At one level, it didn’t work: On Dec. 19, Flake dutifully joined the rest of the Senate’s Republicans and voted for the tax bill. But in the constant war for national attention, the confrontation was an unalloyed success. Barkan’s group, the Center for Popular Democracy, used its viral popularity on the left to launch a new campaign aimed at firing up Democrats for the midterms. “Be a Hero,” it was called.
Latin American revolutionaries used to have an expression, “Sé como el Che” , referring to Che Guevara, the Argentine revolutionary who left a powerful role in Fidel Castro’s government in Cuba to join a doomed jungle guerrilla campaign in Bolivia. Now, for a certain segment of the American left, the catchword was, “Be like Ady,” who like Che was doomed, although not by choice. Barkan’s Twitter handle said it all: “Fighting for social justice and America’s democracy.
He was 32 when he got the diagnosis. It was in October 2016, and at a brunch in Los Angeles, another old friend, neurologist Katie Cross, examined the stiffness in his left hand and said he should get tested. The results changed his life forever. “There’s a parallel universe where he’s sitting at home, angry at this cosmic injustice that’s befallen him,” says Smith. But instead Barkan channeled it, he says. “‘Be a Hero’ is an interesting pitch. … He’s saying, don’t just sit at home and be a victim. You’re angry and pissed off and exasperated. Get some friends and come to Washington, D.C.”
An award, left, Barkan received in 2018 from his employer, and a poster, right, that he helped design in 2008/2009 as part of their advocacy at Yale regarding access to medicine and intellectual property. | Courtesy of Ady BarkanPolitics has its rhythms, and so does ALS. Last summer, Barkan and a revolving crew of colleagues trekked in a caravan from Los Angeles to Washington, D.C., to upstate New York, Maine and back again, mobilizing voters, getting arrested, and campaigning for Democrats.
No therapy can stop ALS’s relentless pace, though it varies from patient to patient. His doctors didn’t object to Barkan traveling because there is no proven way to slow the disease. Yet the long drives and all the talking took a toll, and when he returned home for a few weeks in late August, he was exhausted. “As soon as he got home it got much harder to understand him,” said King. “He had more trouble enunciating. It seemed like all the speechmaking on that trip had an impact.
There just wasn’t much to be done. Barkan was seeing two neurologists, one a clinician, another involved in cutting-edge research. “Both of them are wonderful. And both of them are almost entirely useless to me,” he said. As for edaravone , “it doesn’t do anything as far as I can tell.” In the end stages of ALS, a ventilator is required because the patient’s breathing muscles fail. In Japan, one study showed that 45 percent of ALS patients stay alive on ventilators; in the U.S. only 20 percent. That’s because being on a ventilator requires full-time nursing care to prevent infections, which are what kill ALS patients at that stage. Insurance doesn’t cover them, King explains, “so you have to decide whether to bankrupt your family or give up living longer.
“Can we watch the hearings here?” he asked the two office receptionists, Kendyl Willox and Elizabeth Castleberry. Without waiting for a response, he stopped his wheelchair in front of a TV set. The retinue followed, filling the anteroom’s chairs and couches as Ford was sworn in. “I don’t know whether our Kavanaugh activism was helpful or harmful in the election,” Barkan would say later. “I do know it was the right thing to do. He is odious and we had a moral duty to try to stop him.”
“It’s hard to watch him struggle to get the words out,” says Will Collins, a law school friend, now a D.C. public defender, who came by to visit with Barkan during the Kavanaugh protests. He was shaken by how difficult it was to understand Barkan, remembering the days when they organized NCAA Tournament brackets and played pickup basketball, and their legal clinic defended workers from wage theft. “He had so much to say, and he spoke in complete paragraphs.
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