Ady Barkan, a progressive lawyer and activist known for his advocacy of healthcare reform, has passed away from complications of ALS (amyotrophic lateral sclerosis) at the age of 39. 2024-04-20 11:32:17

His death was announced on Wednesday by his partner, Rachel King, and the political organization Be A Hero, of which he was a co-founder in 2018.

Barkan dedicated his life to social justice advocacy, championing various causes from workers' rights to reforming the Federal Reserve System. However, after being diagnosed with the incurable neurological disease ALS in 2016, just months after the birth of his first child, he shifted his focus towards improving access to healthcare for Americans.

"The awareness of dying was terrible, but dealing with my insurance company was even worse," Barkan said in the trailer for the 2021 documentary film "Not Going Quietly" about his life and activism. "I wanted to spend every remaining minute with Rachel and Carl, but then Congress came for our healthcare. I could no longer stay silent."

Barkan gained widespread attention in 2017 after confronting then-Senator Jeff Flake, a Republican from Arizona, on an airplane about the Republican Party's tax bill while en route home from a protest against the same legislation in Washington, D.C. The 11-minute video of their exchange implored Flake to "be an American hero" by voting against a bill that would cut billions from Medicare funding and limit access to healthcare.

Although that conversation didn't change Flake's vote, it did bring Barkan into the spotlight, and in the following years, he amplified his healthcare advocacy as a human right and other progressive ideas.

Barkan led the "Be a Hero" campaign, traveling the country to encourage voters to support progressive candidates in the 2018 midterm elections. He also co-founded the eponymous organization, which has since campaigned for various causes and now unites nonprofits and political action committees. In the same year, he was arrested in the U.S. Capitol for protesting the appointment of now-Supreme Court Justice Brett Kavanaugh.

Even as he lost the ability to speak, Barkan testified (using a computer system that tracked his eye movements) at the first hearings in Congress for Medicare for All in 2019. In 2020, he interviewed Democratic presidential candidates, including President Biden, whom he ultimately endorsed, and spoke at the 2020 Democratic National Convention.

Politico dubbed Barkan "the most influential activist in America," and in 2020, he was named one of TIME magazine's most influential people. Senator Elizabeth Warren of Massachusetts wrote in the accompanying blurb that "Ady and the movement he champions bring us closer than ever to creating a healthcare system in America — a basic human right."

In 2022, Barkan told NPR that he realized early on that his ALS made people listen to him with "newfound attentiveness."

"The paradox of my situation was that as ALS made my voice weaker, more people paid attention to what I had to say," he said. "As I lost the ability to walk, more and more people followed in my footsteps."


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