Not Going Quietly

Greetings again from the darkness. Nicholas Bruckman provides an intimate profile of a fascinating man, Ady Barkan, a brilliant and relentless advocate for health care rights. Barkan's ALS diagnosis and commitment to cause is interesting enough to carry the film, but by following Barkan, the film serves a dual purpose of educating us on activism and political maneuverings.

Bruckman bookends his film with Ady's testimony to a congressional committee on healthcare. He's in a wheelchair and speaking through an eye-controlled speech machine, similar to the one we saw Stephen Hawking use for many years. We then flashback 3 years to meet Ady's wife - his college sweetheart Rachael - at their home in Santa Barbara, California. As an attorney and activist, we get to know Ady as a man who cares deeply and is committed to fighting injustice. He's especially keyed in on healthcare and social issues.

At only 32 years of age, Ady is diagnosed with ALS. Amyotrophic Lateral Sclerosis is commonly referred to as "Lou Gehrig's Disease". He explains that there is "no cure, and very little treatment", and that the doctors tell him he has three to four years to live. Ady explains that "dying is bad", but dealing with the insurance company is even worse. The ventilator prescribed by is doctor is deemed "experimental" by the insurance company, meaning it's not covered. So what would any good activist do? Well Ady, turns his own experience into a crusade. He founds the #BeAHero campaign with Liz Jaff, a social media strategist. She films Ady's interactions and confrontations with politicians, and they put together a 40 day, 30 congressional district road trip in a specially equipped RV. Their team also includes Tracey, who leads the role-playing on birddogging politicians, and Ady's friend Nate, who assists him with the physical challenges. Their goal is to flip the House in the 2018 election.

Ady Barkan is a funny, intelligent, informed, opinionated, and impassioned man. He knows how to speak to an audience, as well as to politicians who don't share his commitment to healthcare rights, including coverage for pre-existing conditions. On the trip, Ady's health and condition deteriorate before our eyes. It's frightening to watch, knowing how quickly his body begins to fail. But his spirit and his team are relentless, and when circumstances force the dialogue and cause to shift, there is no hesitation.

Bruckman avoids turning Ady into a one-dimension savior. We get to see him with his precocious young son Carl, who was born one year after Ady's diagnosis. Rachael probably doesn't get the screen time she deserves as working mother and caregiver, but it's clear this family has chosen to live every minute they have, and even plunge into the future with optimism. Ady notes how losing his voice is worse for him than paralysis, but his eyes light up when he's with his family. We aren't sure which aspect of Ady is most inspirational, but it's obvious that he's a special man. This was an Audience Award winner at SXSW, and deservedly so.

In theaters August 13, 2021.

I'm an American who certainly wants Medicare-For-All, but for me this film is about a VERY Selfish Man who wasted the last good years of his life fighting for a public cause instead of being with his family instead. Throughout the movie, you see this man get weaker and more deteriorated as he runs around the nation, wasting what potential he had left on strangers who he didn't even know, while denying his family of the Quality Time that he could've spent with them. On some level, this man suffered from Delusions of Grandeur, seeing himself as literally a "Hero", rather than the Family Man who he really was. No doubt his quixotic journey was aided by his Air Head College Professor Wife, who inspired him to go on making speeches and traveling around, instead of putting her foot down to force him to be with his family instead, as ANY decent mother and wife would have done. Ady Barkhan is a FOOL, and his wife is even a Bigger FOOL to let him get away with ignoring his family responsibilities while he still had the ability to effectively interact with his family. Aside from this Sob Story about this man's life, notice that all the causes that he fought for never came to fruition anyway. In other words, all his activism yielded NOTHING anyway. It was a Waste of Time that could've been better spent with his family during the deterioration of his body. I've never been a fan of Soap Operas, and THAT is All this story is.

This documentary was INCREDIBLE. I must have cried 100 times. It is emotional, and also so funny. The journey for health care for all is a long journey, and this film is a fight for rights. I loved it.

The recent election essentially turns "Not Going Quietly" into a form of nostalgia. This focus on Ady Barkan's quest to convince the government not to weaken healthcare really hits hard, especially when you see him meet with Kamala Harris.

Like "Sicko", this documentary is a call for single-payer healthcare (also called national healthcare or Medicare for All). It just makes one wonder why the US stands alone among industrialized countries in depriving its citizens of this crucial service.

As for Ady Barkan, he died last year, so he didn't live to see the US turn its back on his legacy. So sad that we did.

It's ironic that protagonist Ady Barkan's battle to open the floodgates of expensive, high quality health care to everyone largely ignores that he does benefit greatly himself from our healthcare system as it is. The movie avoids the elephant in the room--who is paying for his speech synthesizer, high tech wheelchair and customized motor home? What liberals seem to miss is that this costly care has to be paid for by someone; they just want some other group of taxpayers to foot the bill. The movie also ignores the question of who is paying for these political activists like Barkan to traverse the country harassing politicians and their staffs while most Americans are just trying to make a living themselves which includes paying for much of their own healthcare through increasing premiums, co-pays and deductibles. . The movie is sad in how it documents the decline of a vibrant family man and how all the billions of dollars spent on neuro-muscular disease research has not produced any promising treatments leading to a cure or at least a better result than suffered by Barkan and, more quietly, thousands of others similarly afflicted.