Who Is Ady Barkan? Activist and Father Living With ALS Took Center Stage at DNC

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Ady Barkan, a progressive activist and father living with amyotrophic lateral sclerosis (ALS), gave a speech during the virtual Democratic National Convention on Tuesday night, and began with an emotional video of his journey with the disease. In his speech, Barkan, who has lost his ability to speak and much of his muscle function, used eye gaze technology to demand access to quality healthcare for all in the United States.

“We live in the richest country in history and yet we do not guarantee this most basic human right,” Barkan said. “Everyone living in America should get the healthcare they need regardless of their employment status or ability to pay.”

How Did Ady Barkan Become Known?

Barkan, 35, is a former attorney who was diagnosed with ALS in 2016. He became an advocate for better healthcare options, but it wasn’t until Dec. 2017 that he started gaining national media attention when he encountered Arizona Sen. Jeff Flake on a flight from Phoenix to Washington. Barkan questioned Flake on the GOP’s national tax bill and explained how it would directly affect him if the bill was passed, in a moment captured on video.

“I will need to go on a ventilator to live. But this tax bill is going to force $400 billion in automatic cuts. So what should I tell my son, or what should you tell my son, if you pass this bill and I can’t get a ventilator?” Barkan said.

“Why not take a stand now? You can be an American hero! You really can!” Barkan pleaded. “You could save my life.”

Flake still voted for the bill, and the exchange played a part in Barkan, along with the Center for Popular Democracy, starting a committee called “Be A Hero,” which is focused on supporting progressive candidates and causes.

What Has Ady Barkan Done?

Although Barkan's time is limited, it hasn’t stopped him from protesting. In 2017, he was arrested for protesting that same GOP tax bill on Capitol Hill. He was arrested again when he protested President Trump’s Supreme Court nomination Brett Kavanaugh, and has been arrested numerous times in Washington D.C. for his activism.

In 2019, Barkan lost his ability to speak, but he still made the trip from his home in Santa Barbara, California to testify in front of the House of Representatives in favor of Medicare for All. He used a smart-technology machine attached to his wheelchair to speak for him.

Barkan’s name came up during a first-round presidential debate, when then-presidential candidate Sen. Elizabeth Warren said his story is an example of the shortcomings of private insurance in America.

“He’s dying of ALS and he has really good insurance,” Warren later told MSNBC. “He has about $9,000 every month on average that the insurance company says, ‘No, we’re not doing that. We don’t care that your doctors think it’s right.’”

Why Ady Barkan Spoke at the DNC 

On Tuesday in his video testimonial, Barkan continued to talk about the need to expand healthcare, and how the pandemic has made the “tragic consequences of our failing healthcare system” even more obvious.

“Like so many of you, I have experienced the ways our healthcare system is fundamentally broken. Enormous costs, denied claims, dehumanizing treatment when we are most in need,” Barkan said.

He continued: “Our loved ones are dying in unsafe nursing homes, our nurses are overwhelmed and unprotected and our essential workers are treated as dispensable.”

While Barkan supports Medicare for All, Joe Biden wasn’t Barkan’s first choice for the democratic nomination.

Barkan had previously endorsed Elizabeth Warren, but he told The New York Times he is supporting Biden in the general election because “defeating Trump is essential, even if you don’t love Joe Biden, and that none of our struggles will be over after this election. We need to keep on keepin’ on.”

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