Not Going Quietly Parent Guide

If you were diagnosed with a fatal disease, how would you choose to spend your remaining time? Cherishing time with family members? Writing your immortal novel? Relaxing in a tropical paradise? Binge watching movies?

Not Ady Barkan. When the 32 year old father is diagnosed with ALS (amytrophic lateral sclerosis a.k.a. Lou Gehrig’s disease), he decides to embark on a crusade for a critically important issue: healthcare reform. This decision doesn’t come out of the blue. Barkan was a lawyer who had pursued a career in liberal activism. But those issues became personal when the time spent working through complex medical insurance bureaucracies cut into the time he wanted to spend with his wife, Rachael, and their toddler son, Carl. “The knowledge that I was dying was terrible,” says Barkan, “but dealing with my insurance company was even worse…I already knew America’s healthcare system was broken but I was experiencing its brokenness personally for the first time.”

Barkan’s fight for healthcare hits the big time when he encounters Arizona Senator Jeff Flake on a plane. After sharing his story with the senator, Barkan encourages him to vote against a tax cut that could imperil healthcare funding. Filmed by political strategist Liz Jaff – who Barkan had met only moments before – the encounter goes viral. Determined to seize their time in the spotlight, Barkan and Jaff decide to establish Be a Hero, a group dedicated to protecting and expanding healthcare access.

Ady Barkan is a fighter and he throws himself in to the political arena with gusto, surrounding himself with committed volunteers and activists. But the conflict that constantly tears him apart is within. The night of his diagnosis, Barkan recorded a raw video of his feelings, along with a pledge: “Although I am so sad and so scared, I really, really want to make the best of what I have left with the people whom I love and who love me.” Every speech, every road trip, every meeting with politicians not only takes him away from his family; it accelerates his physical decline, which also has a cost to his wife and son. Ady and Rachael are both aware of the costs of his activism and they both struggle to find a balance between his contributions to the wider world versus his time at home.

Not Going Quietly can be a painful film to watch, as Barkan weakens before our eyes. But it is also a moving portrait of perseverance in the face of adversity. Whether or not you agree with Barkan’s politics, it’s impossible to ignore his commitment and patriotism. Even Jeff Flake, who has been targeted by Be a Hero more than once, has described the activist as “an inspiration to all of us, no matter our politics.”

The one message of this film that will appeal to all viewers, regardless of where they stand on the political spectrum, is its depiction of the joy of family life. Ady is devoted to his family, yearning to be with his wife – a woman of intelligence, courage, and compassion – and his son, who looks like a cherub from a classic painting. His determination to leave a legacy of commitment, fortitude, and love can only be seen with admiration and respect.