Ady Barkan’s Dying Quest for Social Justice

On April 30, activist Ady Barkan came to Capitol Hill from his home in California to advocate before Congress for a Medicare-for-all bill. The legislation, he said from his wheelchair, was “the only solution to what ails the American health care system.” It was the first-ever hearing for Medicare-for-all legislation, but that’s not what made this moment poignant. The voice wasn’t Barkan’s, but that of a computer, which read his testimony for him. One of the most important activists in America today can barely speak or move.

In 2016, Barkan was diagnosed with ALS, also known as Lou Gehrig’s Disease, a terminal illness that kills motor neurons in the brain and spinal cord, eventually impacting the sufferer’s ability to walk, to eat, even to breathe. “I never thought I’d be in this position,” he explained in a CNN op-ed in 2017. “A year ago, I was healthy, taking morning runs on the California coast and looking forward to a new life with my newborn son, Carl.”

Not knowing how much time he had left, Barkan threw himself into activism, turning, as a Politico profile described it, “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.”

He traveled frequently to Capitol Hill—to defend the Affordable Care Act, advocate for immigrant rights and against the confirmation of Brett Kavanaugh, and to protest against the Tax Cuts and Jobs Act of 2017 with a coalition of progressive groups including the Center for Popular Democracy, for which he is an organizer. He’d been an activist for years, but his work gained a new urgency; at the same moment his health was in danger, the government had begun actively working to dismantle funding and programs that millions of Americans like him depend on.

“I have ALS. I am dying,” Barkan told a rapt crowd in the lobby of the Hart Senate building during one protest, back when he could still speak. “But when we come together our voices echo so loud through the halls of Congress, out to the Supreme Court, up Pennsylvania Avenue, all the way to Wall Street.” A few minutes later, as Vox reported at the time, he was arrested, an occurrence he told Politico has happened at least seven times in the past two years, including at the confirmation hearings for now Supreme Court Justice Brett Kavanaugh.

Barkan first gained national attention when he approached Sen. Jeff Flake, R-Ariz., on a plane in December 2017. In an 11-minute video filmed by a fellow passenger, Barkan presses Flake to vote against the Tax Cuts and Jobs Act: “You can be an American hero, you really can. You’re halfway there. If the votes match the speech, think about the legacy that you will have for my son, and your grandchildren, if you take your principles and turn them into votes.” Barkan added, “You can save my life.”

Flake ended up voting for the bill, but the popularity of the video and Barkan’s words “you can be an American hero” allowed the Center for Popular Democracy to create “Be a Hero” a campaign to elect Democrats in the 2018 midterm elections, candidates who would fight for health care, for equitable economic policies and to protect immigrants. (Many of the protesters at Kavanaugh’s hearings were wearing Be a Hero T-shirts.) Ultimately, the “Be a Hero” campaign succeeded in helping Democrats win a majority in the House of Representatives.

According to Politico, House Speaker Nancy Pelosi, in a letter to Barkan after the election, wrote: “Your passion for saving our health care and charting a new path for progressive change were an inspiration throughout the campaign … your labor of love helped us win the House.”

Barkan traveled across the country to do so, putting his body and his declining health on the line. His continued presence implied, without having to say it: If this man in a wheelchair is putting his life and body on the line every day, what can you do?

The work takes a toll, and Barkan doesn’t sugarcoat the impact. “Everything is harder,” he told Vox in 2017. “Getting in and out of the van where they put you [when you are arrested], getting up and down from the chair to walk to fill out my Miranda rights form. Carrying my stuff back to the hotel from the jail. Standing in the cold last night. But those are minor problems at the moment.”

Barkan’s condition has declined rapidly since, according to the Politico profile. He’s relying on various forms of adaptive technology to finish his memoir, due in September. He can’t speak to Carl, who recently turned three. But with whatever time he has left, Barkan is making it count. As he said at the Medicare-for-all hearing in April, “We have a once-in-a-generation opportunity to win what we really deserve. “No more half measures. No more health care for some. We can win Medicare-for-all.”

For his tireless activism, his sacrifice and his refusal to accept half measures, Barkan is our Truthdigger of the Month.