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Ady Barkan used his diagnosis with a fatal neurodegenerative disease to make the personal political and campaign for better healthcare in the US, his final fight after years of advocacy for progressive causes.
Barkan, who was 39, died of complications from amyotrophic lateral sclerosis, or ALS. The activist was diagnosed seven years ago, shortly after the birth of his first child. He fought Republican efforts to gut funding for Medicare, the US government health insurance programme for seniors, and argued to expand healthcare access under the plan known as Medicare for All. With his campaigning, “he knew he was building something that would outlast him”, said Jamila Headley, co-executive director of Barkan’s Be a Hero organisation.
In an interview last year, he said that “the paradox of my situation has been that as ALS has made my voice weaker, more people have heard my message”, adding: “As I’ve lost the ability to walk, more people have followed in my footsteps.”
The son of Israeli immigrants to the US, Barkan was born in Massachusetts in 1983, before his parents moved to California. He moved to New York for college and then graduated from Yale Law School, but was increasingly drawn towards activism, participating in the 2011 Occupy Wall Street protests against economic inequality. At a recent remembrance ceremony in his hometown of Santa Barbara, California, one attendee recalled Barkan joking that law was his fallback career if activism failed to pan out.
In September, Senator Elizabeth Warren said that over the years she had seen Barkan “pick a lot of really good fights”. He worked on a campaign to win sick days for workers in New York City, including a risky procedural move to bring the bill before the city council without the speaker’s support. He helped to launch Local Progress, a network of municipal officials supporting economic and social reform.
A smart, tenacious organiser, Barkan sought “to transform the playing field to change what’s winnable”, wrote friends Sarah Johnson and Brad Lander in The Nation. That approach was particularly apparent in “Fed Up”, his campaign to pressure the US Federal Reserve to live up to an oft-forgotten part of its mandate: striving for full employment.
A tight labour market forces employers to hire black and Latino workers who otherwise face discrimination and brings real wage gains to employees, wrote economist Dean Baker, co-founder of the Center for Economic Policy and Research. After Barkan’s lobbying, “current chair Jerome Powell often sounded like he was reading from Fed Up’s hymn book when he touted the praises of low unemployment. This shift in Fed policy . . . improved the lives of tens of millions of workers.”
Barkan’s profile grew in 2017 after he confronted Arizona Republican Senator Jeff Flake on a flight to Phoenix that, by chance, both men were on. In a filmed exchange, Barkan asked Flake to vote against his party’s tax-cut bill, which Barkan said would trigger cuts to spending on social services — including Medicare disability payments for the sick, like him.
Though the activist urged Flake to “be an American hero” and “save my life”, ultimately the senator voted in favour of the bill.
“He had a deep understanding of power,” said Johnson, the former executive director of Local Progress. “He always saw for any person, for any moment, the things they could do to make things better, and was totally unafraid to say it out loud.”
Barkan was an easy person to befriend, Johnson recalled, with an organiser’s persuasiveness and a sarcastic sense of humor. At his wedding to Rachael Scarborough King, a literature professor and Barkan’s college sweetheart, he told assembled friends and family, “She’s an amazing partner. She laughs at my jokes even when they’re stupid.”
The couple had two children. King wrote on social media this week that she was “holding tight to the wonderful year we had. He got to travel again — to Disneyland with the kids, to Barbados for a dear friend’s wedding, to New York for an award and catching up with friends. He said, ‘It’s amazing that life can still get better.’”
Barkan was the subject of a 2021 documentary, Not Going Quietly, detailing his continued activism even as ALS paralysed his body.
“Our time on this Earth is the most precious resource we have,” he said. “Movement building allows me to transcend my body, and that’s the beauty of democracy, that together we can be more than our individual selves.”
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