Not Going Quietly

Ady Barkan having a dad moment with his young son.

(2021) Documentary (Greenwich) Ady Barkan, Racheal King, Elizabeth Jaff, Cory Booker, Helen Brosnan, Brad Kleffer, Bernie Sanders, Elizabeth Warren, Tracey Corder, Nate Smith, Kamala Harris, Carl Barkan, Ana Maria Archila. Directed by Nicholas Bruckman

 

There are those who consider COVID-19 little worse than the average flu (rightly or wrongly) but one disease that everyone agrees is absolutely horrible is ALS. It is a fatal degenerative disease that slowly robs the victim of every facility and sense, until they are imprisoned in a body that is unable to do anything, all the while retaining full cognizant function. There is no cure and no treatment for it; all one can do is ride it out to the bitter end. Both baseball Hall-of-Famer Lou Gehrig and Nobel-winning physicist Stephen Hawking were among the most notable people to contract the disease.

Ady Barkan was a progressive activist and lawyer who worked for a number of causes. An engaging young man with a room-blinding smile, he had a young wife and a beautiful baby boy. But then, the 32 year old was given the devastating diagnosis; ALS, and doctors figured he had three to five years to live.

But worse still than that diagnosis was dealing with the medical insurance companies. Doctors prescribed a breathing apparatus that was absolutely essential for Baran’s continued living, a device they termed “uncontroversial,” but his insurance company denied it as “experimental.” Frustrated and angry, Barkan chose to channel his frustrations into activism and began advocating for universal health care. And then, Trump got elected and Barkan, wo was going to become more and more dependent on the health care system for his very survival, realized he was in serious trouble.

A chance meeting on a plane home saw a conversation between Barkan and then-Senator Jeff Flake from Arizona in which Barkan pleaded with the Republican politician to “be a hero” and vote against the Trump tax cut (a plea that ultimately proved futile). However the media-savvy activist Liz Jaff, who filmed the encounter, co-founded the Be a Hero PAC with Barkan and they set out to change hearts and minds.

In some things they were successful; aided by their efforts, the 2018 elections saw the Democrats retake the House of Representatives. In other things, they were not; despite their efforts, Supreme Court nominee Brett Kavanaugh was confirmed, despite accusations of sexual misconduct. Barkan worked diligently, trying to advance the agenda of the left while holding the tide back on the politics of the right, but it was taking a toll. The disease was ravaging his body, soon confining Barkan to a wheelchair; he became unable to do basic things like dress himself, bathe himself and feed himself. Eventually, the disease robbed him of his very voice and the film begins and ends with Barkan, addressing Congress by the aid of a computer voice that Barkan operates by using his eyes.

Throughout, we are shown Barkan’s indefatigable sense of humor, his continuing passion, and his unassailable love for his family – wife Racheal (herself a college professor and published author) and infant/toddler son Carl. We also see the toll that the disease coupled with the workload takes on Barkan physically. One cannot help but admire Barkan’s courage.

And if the film gets a little bit hagiographic in that sense, it is understandable Most people given a diagnosis of a fatal disease are not going to use their last years working hard as an activist for a cause; they are going to spend as much time as humanly possible with their families, and do things that are important to them, be it a trip to Disney World or taking a luxury cruise.

Most of what is onscreen is footage from Barkan’s activism coupled with home movies. Amazingly, although his wife Rachael is very much in evidence in the film, we don’t hear from her much, or at least not in meaningful ways. We see the toll taken on Barkan, but we rarely see how the care for a person in Ady Barkan’s position takes its own toll on his loved ones.

For a man for whom family is so demonstrably important, it is a glaring omission. Still, watching Barkan push ahead through his own body’s breakdowns, his occasional despair and the indifference of politicians who mouth platitudes of sympathy out of one side of their mouths and then vote to imperil his life out of the other. Of course, politicians are an easy target to despise, just as people like Barkan who are tilting at windmills with the last of their strength are as easy to admire. Nevertheless, those like Barkan should receive the plaudits they deserve – as the politicians who oppose them the ignominy.

REASONS TO SEE: Barkan is courageous, engaging, and inspiring. Points out the cowardly nature of politics.
REASONS TO AVOID: Fails to get enough commentary from Racheal.
FAMILY VALUES: There is profanity and a sexual assault is discussed.
TRIVIAL PURSUIT: Among the producers of this documentary are actor/activist Bradley Whitford and the Duplass brothers.
CRITICAL MASS: As of 8/18/21: Rotten Tomatoes: 100% positive reviews; Metacritic: 76/100.
COMPARISON SHOPPING: Pride of the Yankees
FINAL RATING: 7.5/10
NEXT:
Raging Fire

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