Arthur Allen is eHealth editor at POLITICO.

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.

His motorized wheelchair is heavy, and it can take a while to get it into the police van, so Aiyana or Nate or some other member of the large crew that supports him—Ady’s Roadies, they sometimes call themselves—will pour a little water into his mouth while they wait, or, following his whispered suggestions, fire off a text to news media or other activists.


“The Capitol Police treat me pretty well,” says Barkan, who has been arrested seven times over the past two years—or maybe eight, he can’t exactly remember. “Some of them gave us the thumbs up when we left the holding pen and said, ‘Keep up the good work.’”

Barkan’s last arrest was in September, at a protest against Brett Kavanaugh’s Supreme Court confirmation. A few days later, he was back at the Capitol for Christine Blasey Ford’s testimony and used the moment to start a Facebook fundraising campaign, right on the spot, for whoever decided to run against Sen. Chuck Grassley in 2022. “Be a Hero,” said the Facebook post that went up, complete with a donate button and video of Barkan speaking haltingly but angrily outside Grassley’s office, after the Iowa senator threw his weight behind Kavanaugh at the hearing.

Over the past 15 months Barkan has emerged as one of the most compelling figures of the new activist left. At age 35, with a 2-year-old son, he is dying of amyotrophic lateral sclerosis, or ALS, a disease with no cure. As the disease rapidly progresses, he has managed to turn his body into a kind of campaign tool, laying it in front of members of Congress, news cameras and activists to inspire action for health care, immigrants and the election of progressive Democrats like Alexandria Ocasio-Cortez.

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

Until December 7, 2017, Barkan was an earnest but obscure young progressive, one with a very focused policy agenda but little national profile. That day he buttonholed Sen. Jeff Flake of Arizona, who happened to be flying home to Phoenix from Washington on the plane Barkan was traveling on, about the GOP’s massive tax bill.

Barkan told Flake that the measure would swell the deficit and eventually make it impossible to pay for health care—even his health care, which was getting more expensive every month. He asked Flake to withhold his support for the tax cut. “Why not take a stand now? You can be an American hero! You really can!” Barkan pleaded. “You could save my life.”

They ended up talking for about 12 minutes, Flake standing in the aisle and listening respectfully but disagreeing with every point, while Barkan’s seatmate, a fellow activist, recorded the interaction. She uploaded the video to YouTube, it was reposted on Twitter and Facebook, and within a week Barkan was being interviewed on CNN, Pod Save America and other media.

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. If Barkan could travel across the country, braving pain and discomfort, fear, bad food, repeated arrests and separation from his wife and small child—if a dying man could make this kind of commitment, why couldn’t you?

One might think the group was using him for publicity, but that wasn’t it. Barkan was using himself; like a Buddhist monk protesting the war in Vietnam by setting himself on fire, he wanted his own misery to spark a change of heart and policy.

Last fall, when Senate corridors filled with activists trying to stop the Kavanaugh confirmation, many wore “Be a Hero” T-shirts. And though they failed to stop Kavanaugh, who was seen on the left as uniquely hostile to causes like universal health care, the organizing they stimulated may have contributed to the 39-seat midterm seat swing for Democrats. Speaker-in-waiting Nancy Pelosi tweeted her thanks with admiration: “Your passion for saving our health care and charting a new path for progressive change were an inspiration throughout the campaign,” she wrote to Barkan. “Your labor of love helped us win the House.”

By that time, Barkan was back in Santa Barbara with his wife and son. His health was getting progressively worse.



***

Clockwise from top left: Barkan and King on vacation in Turks and Caicos in 2015, the couple at friend's wedding in 2012, Barkan with their son Carl in 2018 and the couple outside their newly-purchased Santa Barbara home in 2014. Barkan was diagnosed with ALS in 2016 four months after Carl's birth. | Courtesy of Ady Barkan

Latin American revolutionaries used to have an expression, “Sé como el Che” (Be like 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. Living with @rachael_scar and Baby Carl. Dying of ALS.”

Barkan, a graduate of Columbia University and Yale Law School, was born in 1984 to Israeli immigrants and grew up in Claremont and Pasadena, Calif. As a child, he stayed at the dinner table to talk with his parents, who were academics. Some kids dream of playing baseball or becoming firefighters or building stuff; after reading “To Kill a Mockingbird” as a kid, Barkan says, he decided to become a lawyer for the poor and disadvantaged.

He first came to national attention with the 2014 Fed Up campaign, which took a very narrow but specific policy goal: to diversify the regional boards of the Federal Reserve, pressuring the Fed to keep interest rates low in part by considering the interests of working people, not just finance-sector millionaires. Launching a direct-action campaign at one of the most opaque bodies in American government was an idea both quixotic and serious (and novel enough to get Barkan named to the POLITICO 50 list of innovators that year). He was “a spectacularly creative and vibrant organizer,” said Ben Wikler, Washington director of the left-center activist group MoveOn.org.

“The important thing to know about Ady is, he emerged fully formed,” says Nate Smith, a longtime friend who accompanies and assists Barkan on some of his travels. As teenagers, they planted campaign signs opposing a 2000 ban on gay marriage in California. “I met him when we were 14, but he was probably like this when he was 5.”

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.

As many as 30,000 Americans, at any given point, have ALS, a process that kills motor neurons in the brain and spinal cord. ALS patients gradually lose the ability to walk, to move, to eat, and eventually to breathe. The average age of diagnosis is 55. Barkan was more than two decades younger when he was diagnosed, and he and his wife, University of California Santa Barbara English professor Rachael King, had a new baby. ALS is always fatal, usually within five years.

Barkan decided to pursue every medical option available to him, but there weren’t many, and rest wasn’t particularly recommended in the treatment of ALS. So without much debate or turmoil, he decided to put his affliction to use and hit the road. His own frail body would take center stage in a campaign to protect Obamacare and push for a broader, public-funded health care system, and to flip Congress in 2018.

He would keep agitating for the causes he believed in. The only difference was that now, some of them were playing out in his own body. Barkan and King had met at Columbia, where she was an editor at the campus newspaper, the Spectator, and he contributed reporting and op-eds. Barkan was the kind of person to go all-in on things—friendships, work, politics, love, and when it came to deciding how he’d live in his ALS-shortened days, King supported his decision. She refers to a quotation in essayist Rebecca Solnit’s elegy to activism, Hope in the Dark: “Hope is not a lottery ticket you can sit on the sofa and clutch, feeling lucky. It is an axe you break down doors with in an emergency.”

“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.”

Barkan’s grave condition and gritty determination would inspire many on the left during a dire political moment. With Trump sweeping into office, and Republicans finally executing on their policy goals, American liberals had a grim year—stunned by unforeseen misfortune, powerless and sad. But not quite ready to give up the fight. And now, propelled by the video, they had a new hero available: Ady Barkan, who had stood and tilted at a GOP windmill while facing a future as black as imaginable.

“Ady has become the moral center of gravity in the major social justice issues of the Trump era,” Wikler says. “Everyone has to ask themselves, if they only had a short time to live, what they would do? … He strikes a deeper chord than people are used to seeing in the public arena.”

Civil disobedience had not been part of Barkan’s game plan in the past, but it was central to the post-ALS campaign, when putting his body on the line suddenly had so much more gravitas and visibility. “I’ve got a pretty sad story at the moment,” he says. As Berkeley Free Speech Movement leader Mario Savio had once put it, there was a time to “put your bodies upon the gears and upon the wheels, upon the levers, upon all the apparatus.”

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 Barkan

***

Politics 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.

Traveling in a wheelchair-accessible van purchased with help from a GoFundMe campaign, Barkan spoke with veterans, with Black Lives Matter activists, with union groups; he visited convention centers and private homes. His companions became a roaming political family that shared duties ranging from passing out literature to feeding Barkan pizza, because he was starting to have difficulty lifting his arms.

“He’s the kind of person who makes you want to radically transform the world and makes you want to radically transform yourself because he’s such a good person,” said Tracy Corder, an Oakland, Calif., activist who had planned to accompany Barkan’s caravan for two weeks, but ended up still on the bus two months later. “Whether he’s at a veterans’ breakfast in Reno or a community meeting in Detroit he speaks the same way. He doesn’t play to the room.”

By the end of the summer, Barkan needed a wheelchair full time, and his voice was so weak that they had to buy him a strap-on microphone attached to an amplifier, so he could be heard.

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.”

It was not as if Barkan and King had given up trying to fight his disease. They pursued expert advice, and in early 2017 even traveled to Japan to buy edaravone, a new ALS drug that hadn’t yet been approved in the U.S.

Aiyana Sage, an assistant and caregiver, works with Barkan as a home health aide. | Nancy Pastor for Politico Magazine

Friends from law school class ran a GoFundMe campaign to pay for a home health aide, raising $21,000 from 151 people in a few days. Some of the donors worked at big corporate firms, others for public interest concerns. His aide, Aiyana Sage, also ran Barkan’s Twitter account and answered his email. As time went on, two other home aides helped care for him during the week.

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 (which FDA approved in May 2017), “it doesn’t do anything as far as I can tell.”

As it is for many chronically ill Americans, fighting his own health insurer was part of Barkan’s struggle, one that he quite openly joined to his larger political struggle. HealthNet, which offered coverage through King’s job, initially refused to pay for a ventilator or for edaravone. After Barkan raised a fuss, it backed down, but he sued them anyway, in a class action filed in June.

“I did it because this is how they do business—deny, deny, delay, and then people give up,” Barkan said. “We want them to change their practices, and we also want to make the political case for single payer.”

HealthNet tried to get the lawsuit dismissed with forced arbitration, but in November, a judge ruled the case could go to trial.

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. It’s another example of how broken our system is.”

Ady Barkan is at the center of a group that protested outside the offices of Senators Collins, Flake and Sasse over the confirmation hearings for then Supreme Court Justice nominee Brett Kavanaugh in September 2018. | M. Scott Mahaskey for Politico Magazine

***

On the morning of Thursday, Sept. 27, the day that Christine Blasey Ford and Brett Kavanaugh testified in the Senate Justice Committee, protesters gathered around the Calder statue in the Hart building to put Barkan’s confrontational strategy to a test—chanting, marching and shouting questions at visibly uncomfortable senators. (More than 300 people would end up being arrested by D.C. and Capitol police, on charges that included “incommoding.”)

Barkan, who’d been arrested two days before, wore gray sweatpants and a black “Democracy” T-shirt, his intense blue eyes shining with determination, fingers on the controls of a $30,000 wheelchair (provided by insurance). He greeted old friends and strangers who had heard about Barkan or seen his YouTube videos and wanted to shake his hand.

As the hour approached 10 a.m., with Ford scheduled to begin testifying, Barkan needed an office in which to watch the proceedings. With a dozen colleagues in tow, he hurried down the hall, nodding to Sen. Kirsten Gillibrand’s staff, pausing briefly before zipping around the corner and past the threshold of Ted Cruz’s office, 404 Russell.

“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.

The group, about 14 strong by now, defiantly sprawled over the couches and chairs in the Senate waiting room, with its twin philodendrons, a bronze eagle and a Ronald Reagan biography over the fireplace. Cruz himself was nowhere to be seen, and Willox and Castleberry were not overjoyed to be hosting a touring contingent of progressive agitators. But after a few minutes in the back office they returned to offer snacks and beverages to the visitors—candy, bottled water, cherry Dr. Pepper.

As Ford parried the prosecutor’s questions, a family from Odessa, Texas, came by for a visit. Three women from Herd on the Hill, a progressive group, delivered 20 signatures from Texans opposed to Kavanaugh’s confirmation. Ross Dworkin, a specialty pharmacist, dropped in to lobby Cruz on a bill. As the hearing progressed, Barkan offered elated commentary. Ford was so genuine, he said. He was confident that her testimony had put the Republicans in an untenable position. Helen Brosnan of New York City, one of Ady’s Roadies, fed him Skittles.

With the aid of a Eye Gaze Device, Barkan can use eye tracking technology combined with speech-generating devices to help him communicate. | Courtesy of Ady Barkan

***

By the time the campaign failed, with Flake, who had briefly ground the confirmation to a halt by calling for an FBI investigation of Ford’s claims, throwing his support to Kavanaugh, Barkan had returned home to King and Carl.

“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.”

Though he wasn’t persuaded, Flake was left with “a lot of respect” for Barkan, he says. “He’s very committed to what he was doing, and obviously this has not been easy for him, to travel and to speak out, given his condition. It speaks well of him.”

Month by month, ALS cripples the muscles of speech. The things Barkan says remain acute, but it becomes harder and harder to understand him, and the amplifier produces plangent sounds.

“I continue to decline rapidly,” he told me in a February message via email. He had had a feeding tube installed and could no longer take a single step. “My left hand is almost completely paralyzed. Worst of all, I’m now totally unintelligible to anyone but Rachael and Aiyana and even they usually have trouble.”

“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.”

One of Barkan’s friends said that as he was losing his physical voice, he was gaining a larger one, as a kind of martyr for health care. But that, of course, was also poignant. “It’s hard for someone who knows how smart and dedicated he is to hear people talk over him, or ask me if they can take a picture with him,” says Smith.

In January he’d started using a technology called Eyegaze, which has laser beams that track a paralyzed patient’s eyes following lines on a screen, converting them into machine recordings that use the patient’s voice.

Barkan, who has nearly lost all his capacity for movement, entering his home via a motorized wheelchair and ramp in March 2019. | Nancy Pastor for Politico Magazine

Barkan had begun “banking” his voice last year, when he still could. Now, he was using Eyegaze to write emails and to revise his memoir, “Eyes to the Wind,” set for publication in September. The technology was too slow for group conversation, or for “age-appropriately impatient Carl,” but “a thousand times better than nothing.”

“I was a champion debater in high school, and an award-winning thespian,” Barkan had told me. “Speaking is the one thing I did best. Losing my voice is by far the worst thing.”

He had recorded himself singing songs to Carl, who will turn 3 in May.

“We had ideas of this very long life together,” King told me, “having conversations around the dinner table and being very involved and present.”

The investment and passion that Barkan put into his activism had always drawn her, and it was still “wonderful to see him make meaning out of this horrible experience and to translate that into having impact on a lot of peoples’ lives.” But of course it was all a tradeoff. His looming fate, she says, “is very hard to deal with.” His prominence, and the success they feel he’s had as an organizer in part because of the disease, is “bittersweet for all of us.

“We’d trade the attention he’s getting for him not having ALS.”