You’re dying, but Ady Barkan, 34, is dying faster.
Maybe there are abnormal cells in your skin; maybe there’s plaque in your interior arteries; maybe you’ll be hit by a car. Ady Barkan’s death is less of a mystery. His motor neurons are dying, melting his muscles and gradually rendering his body uninhabitable. As he slowly loses use of his arms, legs, and back muscles, he also loses the muscles that allow him to speak. And swallow. And breathe. He might die from choking, or from falling, or from pneumonia. What’s certain is that he’ll have his mind till the end.
Does this make you weep? Good, weep. Ady Barkan — who will die of ALS, amyotrophic lateral sclerosis, leaving behind his wife Rachael and their beautiful two-year-old son — wants you to know just how much pain he’s in. Despite the name recognition the disease enjoys thanks to famous patients like Lou Gehrig and Stephen Hawking, scientists know little about the illness’ cause and nothing about its cure.
“It’s such an unclear diagnosis and an unclear timeline and people progress at all sorts of different rates,” Barkan’s wife, Rachael Scarborough King, told me.
But Barkan’s disease has progressed quickly – he needs an assistant now in the mornings, and King knows they’ll need one at night soon, too. In recent weeks, “Even my right pinky has become useless,” Barkan told me via an email typed by his assistant. There’s no telling when he’ll need to go on a ventilator, which can keep ALS patients living long past the median three-year prognosis, though deadly infection is a constant risk.
And so death has become the center of Ady Barkan’s life. “I’m dying!” has become his slogan and rallying cry, and not because he savors attention. He’s betting his last, labored breath on the hope that putting his pain on display will lend a human face to policies that could lessen human suffering. Do you feel manipulated? Good, take action.
Over the last two years, with the help of a team of activists, a few iPhones, and small dollar donors, Ady Barkan has made himself into a one-man reality show. And the reality is that pain is inevitable, but every person could become the hero who changes the story.
You probably know Barkan, even if you don’t know you know him. Remember the attempt to sway Senator Susan Collins’ Kavanaugh confirmation vote that raised nearly $4 million for anyone willing to challenge her? That was organized by Barkan. Remember in 2017, during the GOP tax bill hearings, when a disabled man went viral after confronting Senator Jeff Flake on an airplane and begging him to save his life by voting against the bill set to gut Medicare and Medicaid? That was Barkan. Remember the two women who stormed Flake’s elevator to share their assault stories? Barkan was right there.
In October 2016, as Barkan tells it, he had a perfect life – a fulfilling job as a lawyer-activist for the Center for Popular Democracy, where he’d led a groundbreaking grassroots campaign to reform the Federal Reserve. He was blissfully married to King, an academic whom he met when they both wrote for the student newspaper at Columbia. (He was an opinion columnist. She was his editor.) They had a newborn baby, Carl. Barkan loved running near the beach in their town, Santa Barbara. One day, he mentioned to a doctor friend that his left hand had been feeling oddly weak. Within a month, as he puts it, “I was dying of a rapid terminal illness with no cure and no good treatment, and the country was about to be controlled by a fascist, racist kleptocrat.”
“So,” he said. “It was a hard month.”
A death sentence didn’t make him an activist. It made him depressed. He made videos of himself, mumbling, “I can’t believe it. I can’t believe I have ALS.” He was too sad to hold Carl. Soon, he would be literally unable to lift a finger.
But passivity isn’t the Barkan way.
Barkan’s mother was an immigrant who made her way to Israel from Romania in the 1970s, where she met his father, a Tel Avivian whose parents fought in Israel’s War of Independence. They came to America, where they became academics, got divorced, and married two more academics. “I was raised in a very secular Jewish household,” Barkan told me – our conversations took place over email because speech is increasingly difficult for him.
“We talk about oppression at the Seder table, but that’s about it, unfortunately,” he said. Notions of “humanism and intellectualism” underlying secular Judaism do, he acknowledged, inform his work. But that’s it. This does not explain why Barkan seems to personify a line from the Talmud: “The day is short and the work is much. It is not for you to complete the work, but neither are you free to abstain from it.”
Barkan began the work early. As a teen in Claremont, California, he fought anti-gay rights legislation, noticing that his skills from speech and debate and thespian club transferred easily to piping up at community organizing meetings. He often dragged along his childhood friend Nate Smith, who told me Barkan has always had “a total allergy to unfairness.” He deepened his love of progressive causes at Columbia, went on to study at Yale Law, and then moved back to New York, first working to safeguard the legal rights of immigrant workers, then to clerk for Judge Shira A. Scheindlin, who, in 2013, famously found that New York’s “stop and frisk” policy allowed for racial profiling.
“He’s a very, as you know…enthusiastic person,” Scheindlin said of Barkan. As a young lawyer, she recalled, he would spend “hours and hours” on civil rights cases, spurred by his faith in “making [the justice system] work for everyone equally – the rich and the poor, the advantaged and the disadvantaged.”
Barkan, now seriously restricted in his movement, said that he and King allow Carl to watch greater and greater amounts of TV. “It’s a great way to bribe him to sit on my lap,” he told me. In his son’s life, Barkan said, “I increasingly have to content myself with being an observer.”
Yet Barkan is also more active and focused than he’s ever been. “There’s this kind of clarity you get from thinking about the end of your life and how you want to spend the time that’s remaining,” King said, speaking by phone.
In a viral video “This Dying Father Has A Heartbreaking Message For His Baby Son,” Barkan addresses his toddler: “I don’t know how much longer I’ll be around for you,” he says. “The coming years are going to be hard, Carl. For me, for you, for mom. I’m going to need medicine. I’m going to need a ventilator. And I’m going to need Medicare to help pay for my healthcare.” The ingenuity of the clip seems, at first, to be that Barkan is willing to exploit his own death, even his own fatherhood, to promote policy change. A dying man can afford to be ruthless – in the video Barkan presses his lips against King’s forehead, bouncing Carl on his lap – as if there is no limit to the intimacy he will reveal to move voters’ hearts.
Yet his wife sees it differently — less a political ploy, more of a living will. “I think he’s trying to find ways to both be really present in Carl’s life now and to preserve these images of him for the future,” King said. “He’s trying to find a way to be a very involved father even with this serious disability.”
An awareness of his mortality and a drive to leave Carl a legacy of change made Barkan more of an effective organizer than ever. “I’m no longer intimidated by the vast eternity of death,” he said. “Talking about ALS in my activism [provides] me with an outlet for my anger and sadness.” Barkan, who once stared down all twelve presidents of the Fed with a hand-raised army, wasn’t easy to intimidate, but now it’s next to impossible. In videos of Barkan confronting the Fed in 2015, he is charismatic. In videos of him this summer, telling an audience from his wheelchair, “I am willing to give my last breath to save our democracy! And I’m here to ask you: What are you willing to give?” he comes off rather Christ-like.
In late 2017, congressional GOP leaders released plans for a $1.5 trillion tax bill, which the Joint Committee on Taxation found would add a projected $1 trillion to the national deficit. The shock to the deficit, Barkan understood, would likely trigger a wave of cuts to social services like Medicare and Medicaid, services Americans might not understand are implicated in a tax cut. Barkan flew to the nation’s capital, where he wheeled down the halls of Capitol Hill in hot pursuit of lawmakers. “I’m dying!” he calls feebly after Senator Lindsey Graham, who turns tail and flees. “Come on, I’m dying!” But no one would meet with him.
After years of trying to make the Federal Reserve relevant to the masses, connecting the stultifying minutiae of a tax bill to human dignity was now easy for Barkan. His ailing body mirrored the battered body politic of the American healthcare system. But no one would listen. So he went home. And at the airport on the way, he met the woman whose unbridled enthusiasm for change would match his own: Liz Jaff.
Jaff is 33, a self-identified “loud Jew,” and an incorrigible innovator. She describes herself as “relentless.” The former vice president for business development at social fundraising site Crowdpac, Jaff quit her job looking for a more partisan gig. She turned her skills to running strategies for grassroots campaigns. While standing in line to board a plane, Barkan approached Jaff as she hung up her phone. “He started to ask me questions because he’d eavesdropped on my conversation,” she recalled. “I thought – who is this obnoxious guy? But I kind of liked him.”
They learned that Jeff Flake was another passenger on the plane. “There’s nowhere for him to go,” Jaff remembered teasing Barkan. “You could talk to him right now.”
“Would you film it?’” Barkan asked her.
One they were in the air, the senator strode down their aisle. Barkan started speaking. Jaff held her iPhone camera.
In the video, Barkan’s wavering voice is just audible. “This is your moment to be an American hero,” he begs Flake, after painstakingly detailing the way the proposed cuts could trigger cuts to life-or-death social services. Flake’s face is shot from below, contorted in discomfort. “He obviously wanted to be celebrated for his integrity and independence,” Barkan later reflected. “I was trying to convince him that he needs to take heroic actions, not just say inspirational things.“
“My life depends on it – I need you to make your vote!” Barkan cries in the video.
“You’re very – you’re very up on everything, aren’t you?” Flake says, in a tone that suggests that a person with a disability is less likely to be able to parse tax law.
“No treatment, no cu-cure,” Barkan says. “What will you say to my son? You can save my life!”
“I was trying to use ideas and language that I thought would appeal to him,” Barkan told me later. Flake voted yes on the tax bill, but not before, in a bid to pass the annual budget, Republicans agreed to waive the rule that could have triggered the cuts.
By the time the wheels touched down, Barkan was a social media celebrity – Jaff had come up with the hashtag “FlakesOnAPlane.”
The next week, baby Carl and King joined Barkan, camping out with him in the halls of congressional buildings, where Barkan and Jaff were arrested, protesting tax cuts. In February, Barkan called his old friend Nate Smith, and asked him to accompany him to DC to help with his care. They protested the rollback of DACA. Both were arrested. Police don’t like arresting people who are in wheelchairs. Sometimes, Barkan said, as he is arrested, security officials whisper things like, “Keep doing what you’re doing.”
Barkan’s next move was to work off the theory born from the success of #Flakesonaplane – that most politicians, most people, have something of the wavering, approval-hungry moral confusion of a Jeff Flake.
And so, in the summer of 2018, with a micro budget, and his words to Jeff Flake ringing in his ears, Barkan, Jaff, Smith, three staffers, and a tiny film crew boarded a wheelchair-accessible RV. They crossed the country, visiting twenty states, holding “Be A Hero” rallies, meeting with local members of Congress and ordinary citizens. “Ady Barkan is a true American hero,” Senator Bernie Sanders said, during their joint rally. Sanders reposted the footage of him and Barkan speaking together on his social media on the morning of the midterm elections.
The Be A Hero crew filmed everything during their tour. “I…saw him change people’s minds,” Jaff said later. In the footage of the tour, Ady is barely able to raise his hand in a fist.
“I can transcend my dying body by hitching my future to yours!” he shouts, hoarsely, as an audience roars.
Barkan makes the argument that his body is the soul of America. It is weak, and unprotected. And you can change that.
Barkan’s wife also navigates daily between the soul and the body. King balances a professorship in English literature, a toddler, and an increasingly ill husband whose last campaign means that any privacy the family would have is wrested away. And throughout, she argues that her situation is “pretty common” in America.
“I think so many people have this work-life issue balance and are trying to figure out a way to handle that in a society that provides very little support for working parents,” King said.
She recalled that, as undergrads, she and Barkan went on a date to a protest against Columbia’s use of sweatshop for their merchandise. There are so many stories of injustice, she insisted. Her tragedy is just one example.
Earlier this year, Jaff and Barkan started a Super pac to fund ads starring Barkan. In August, they partnered with local Maine organizations to crowd fund for Senator Collins’ opponent in advance of the Kavanaugh vote. They hoped to raise fifty-thousand dollars. As the fund flooded with cash, Collins accused its creators of attempted bribery. “It’s politics,” Barkan responded. As the technique of wielding personal anecdotes at lawmakers, known as “birddogging” grew popular, some labeled it harassment, but Barkan disagreed. “The first amendment protects the right of the people to peaceably assemble, and to petition the government for a redress of grievances. It’s not harassment, it’s democracy,” Barkan told me.
One day, while writing this profile, I sent three emails – two quick work-related inquiries to work colleagues, and several questions about mortality to Ady Barkan. Guess who got back to me first.
“He understands what it means to live a life of service,” actress Alyssa Milano told me. She partnered with him during the Kavanaugh protests. “Being in his presence is transformative.”
Barkan’s signature issue since his diagnosis has been healthcare access, but he is equally passionate about ideas many Americans find more radical. “If I had another five years of health, the campaign I would want to run is a guaranteed good jobs campaign,” he told the podcast Interviews for the Resistance, eagerly describing a plan where instead of unemployment benefits, people are put to work “cleaning the streets, rebuilding our infrastructure, taking care of old people and young people, [sic] writing plays, making music.” Barkan also has Israeli citizenship, and his support of a two-state solution that would leave a thriving Israel and an independent Palestine, is borderline extreme in left-wing circles. And yet – one of Barkan’s closest partners in change making has been Linda Sarsour, a longtime activist and organizer of the Women’s March, who is known for her harsh rebukes of Israel.
Their friendship dates to Barkan’s early years as a lawyer-activist, and he says they’ve been partnering “very intensely” over the last year, “always with a central focus of building multiracial solidarity.” It’s almost impossible to find an article about Barkan that doesn’t feature him clasping hands with Sarsour, both of them grinning. “I’m Muslim and Palestinian, he’s Jewish,” Sarsour told me. “People wouldn’t expect us to be friends. He’s a magnificent human being…He calls me up and says, ‘Linda I need a favor,’ and I say: Tell me what you need me to do, anything, I’m ready.”
Barkan belongs to a new class of activists: Those who show their wounds. From the Parkland teens recalling the sound of bullets tearing through their friends, to Hollywood actresses publishing essays describing sexual assault — each seek to put a human face to a policy problem.
And nobody does it better than Ady Barkan. It would all be so horrifically performative, except the stories are true, and the victims are real, and their pain is proof that mechanisms that should have protected them failed. By bloodied, damaged, example, the activists show that the mechanisms could fail you, too.
Hollywood is hungry for stories like Barkan’s – attractive everyman, struck with illness, rises up a hero, fist to the sky, chair on the ground. One day, his story will surely be a movie.
But today, Barkan, with the help of his extensive network, is working to make the story unfold, right now. Ady Barkan is asking you not to wait until he’s dead to grieve him. Let his life change your life while he’s still here.
Because he knows, and his friends know, his story isn’t special; it’s regular. Being able-bodied is a temporary state. The body is fragile and will certainly die. People are well, until they are not.
How could anyone be moved to spend his or her last days doing this work?
“It makes me feel very alive,” Barkan said. “And that is a precious sentiment.”
Jenny Singer is deputy life editor at the Forward. Email her at email@example.com