Ady Barkan's Last Stand

Ady Barkan, a health care activist who suffers from ALS, testifies before the House Rules Committee on Tuesday, April 30, 2019. (J. Scott Applewhite/AP)
Ady Barkan, a health care activist who suffers from ALS, testifies before the House Rules Committee on Tuesday, April 30, 2019. (J. Scott Applewhite/AP)

Since the 2016 election, we’ve seen the emergence of activists and politicians with the tenacity to fight Trump and the GOP’s austere vision of the world with bold and egalitarian ideas of their own. Some of these leaders won seats in Congress. But one of the most interesting and compelling people on the frontlines of this growing movement for progressive populism has been Ady Barkan, a 35 year-old lawyer and progressive organizer.

Three years ago, Barkan was leading a happy existence in Santa Barbara, California with his wife and young son, when he was diagnosed with ALS — a devastating neurological disease, with no cure and limited treatment options. Doctors told Barkan he had only a few years to live. There’s no telling how any one of us would react to a prognosis so shattering until it’s real and looming right in front of us. But the manner in which Barkan faced his imminent departure from this world is something that may one day be reflected upon as a turn in U.S. history.

Since Trump won the White House, Barkan has emerged as one of the most recognizable activists fighting for "Medicare for All." He confronted Jeff Flake on a cross-country flight and grilled the former senator from Arizona about supporting the Republicans’ plutocratic tax reform bill, which lavished subsidies on the rich and threatened the solvency of government health care programs. The video of Barkan’s exchange with Flake went viral and seemed to awaken the public’s appetite for not only getting up close and personal with politicians, but reasserting control of our democracy in a broader sense.

Barkan took his activism to the next level in 2018 when he launched the Be A Hero campaign: a grassroots campaign that began as an effort to sway the votes of “moderate” Republicans including Flake and Susan Collins of Maine on issues such as taxation and court appointments. Barkan was on the floor of the Capitol building in his wheelchair when activists protesting Brett Kavanaugh’s SCOTUS confirmation were arrested. He was swept up with them, and it wasn’t his first time. He had also been arrested during a tax reform protest the previous year. Barkan’s run-ins with Capitol Police became so frequent that they developed a special protocol for arresting him -- rather than cuffing or dragging him out of his wheelchair, they would put a bracelet on his wrist to show that he was "detained."

But we may remember Barkan the most for his presence yesterday morning at the first-ever congressional hearing for Medicare for All. At significant risk to his own health, Barkan appeared before the House Rules Committee and spoke about the urgency for creating a single-payer health care system. Citing the monetary expenses that his family had weathered since his ALS diagnosis — despite having better-than-average health insurance — and the perversity of putting financial barriers between people and care, Barkan offered a lament for what is ultimately lost when health care is treated as a for-profit industry: the time to do the things we love, together.

“Time is the most precious resource we have,” Barkan said. (He delivered the speech with the aid of a computer-generated voice, because the function of his diaphragm and tongue had deteriorated.) “Nurses, doctors, patients, caregivers, family members — we are all insisting that there is a better way to structure our society, a better way to care for one another, a better way to use our precious time together.”

Watching Barkan’s testimony on C-SPAN, I felt choked up and hot with anger. How could a man in his position be forced to ask for compassion and action from elected officials? But as I reflected on Barkan’s words, I realized this was the wrong thing to take away from his testimony.

We already know that Republican and Democratic politicians mostly oppose Medicare for All on ideological or “practical” grounds, and that this bipartisan intransigence has consequences for the millions of Americans who suffer under our existing insurance model and are generally more supportive of universal health care. All the “nurses, doctors, patients, care givers, [and] family members” whom Barkan spoke of represent a growing populist desire for a more humane health care system — or, as Barkan said in his closing statement to Congress, the care that “we really deserve.”

I imagine telling my own children the story of Ady Barkan ... the bold, beautiful man who reminded us that we are worthy of better things

It might seem odd to applaud Barkan for arguing something so simple as the idea that we, as human beings, deserve good things like kindness, dignity and idle time. But consider the latest push among Democratic primary voters to support Joe Biden’s presidential campaign on the grounds of “electability” and lowered expectations for what kind of future we can have. Consider the imbalance between public support for universal health care (which multiple surveys clocked at 60-70% last year) and our failure to elect enough like-minded politicians.

Ady Barkan’s testimony was not aimed at Congress. It was aimed at us.

“Join us,” he said. “This movement is a battle worth waging and a battle worth winning. For my son Carl, for your children and for children’s children.”

Like many Millennials, I don’t know whether I’ll have children of my own one day. It depends on several factors, some of which are political. But the prospect of a different society in which all of us are afforded the lifelines and dignities that Ady Barkan has spent the final years of his life fighting for makes parenthood feel slightly more possible and less terrifying.

I imagine telling my own children the story of Ady Barkan and instantly, I feel a lump in my throat, for the bold, beautiful man who reminded us that we are worthy of better things. We can honor his fight by taking it up ourselves, rejecting pithy half-measures and achieving universal health care.

The care we deserve.

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Miles Howard Cognoscenti contributor
Miles Howard is an author, journalist, and trail builder based in Boston.



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