Ady Barkan

Cofounder, Be a Hero PAC

Fast Facts

Ady Barkan

All-purpose activist

Industry: Advocacy
Key previous position: Center for Popular Democracy
Education: Columbia; Yale Law
Notable fact: Recently published a memoir

NJ50 Profile

Speaking is more difficult than ever before for progressive activist Ady Barkan, but the more ALS riddles his body, the louder his voice is heard.

After he was diagnosed with ALS, also known as Lou Gehrig’s disease, three years ago, Barkan has become, according to Politico, “the most powerful activist in America,” advocating health care reform, workers’ rights, and an end to mass incarceration. As a measure of his influence in progressive circles, Democratic Rep. Alexandria Ocasio-Cortez wrote the foreword to his memoir, Eyes to the Wind, published earlier this year.

“Even through his vocalizer, Ady’s powerful words forced an urgency and moral clarity that members could not look away from or ignore,” Ocasio-Cortez wrote. “I saw their discomfort at issuing the usual excuses, and Ady also would not tolerate them—even with many physical capacities gone.”

Barkan emerged on the national scene in 2017 after an airplane confrontation with then-Sen. Jeff Flake went viral. In the video, Barkan implored the Republican to “be a hero” and vote no on the proposed tax cuts at the expense of Medicare, Medicaid, and Social Security. Flake ended up voting for the cuts, and Barkan capitalized on his fame by launching the Be a Hero campaign, which champions progressive causes.

He led a group of activists to Washington last year to protest the confirmation of Brett Kavanaugh to the Supreme Court. Sitting in his wheelchair in the lobby of the Russell Senate office building, Barkan listened to a letter he had written denouncing the nominee read aloud by his fellow activists—right before Capitol Hill police arrested him.

“The way that I have tried to make meaning out of my ALS is to turn it into a weapon for struggle, so that it becomes more than merely tragedy,” he told The New York Times. “More than merely loss.”

It’s no secret that Barkan, 35, has limited time left, so he now focuses his efforts on passing Medicare-for-all. He testified before Congress in April on improving access to health care. Lately, Democratic presidential candidates have been making the pilgrimage to his home in California to discuss their plans and lobby for his coveted endorsement.
Kirk A. Bado