Year: 2021

Runtime: 96 minutes

Director: Nicholas Bruckman

Writers: Nicholas Bruckman, Amanda Roddy

Stars: Ady Barkan, Rachael King, Tracey Corder, Elizabeth Jaff

By Joan Amenn

“Not Going Quietly, ”the SXSW Jury Awards Winner of Special Jury Recognition for Humanity in Social Action, is a uniquely stirring story of emotional strength in the face of the impossible. More than a documentary of political activism, it is a wrenching tale of one man’s refusal to succumb to an illness that slowly robs him of everything but his mind just as he begins to realize his life’s most important work. From the day Ady Barkan receives the diagnosis that changes his life forever to his first confrontation with his health insurance when it denies him coverage for a breathing machine, he remains indomitable.

Barkan learned at age 32 that he had amyotrophic lateral sclerosis, or ALS, a progressive neurodegenerative disease for which there is no cure. The average person might be intimidated in the presence of a US senator, but Barkan is anything but average. His encounter on a plane with then-Senator Jeff Flake of Arizona becomes a viral sensation in raising awareness for the urgent need for better health care in America.

On a personal level, Barkan seems to draw strength from organizing a movement based on this issue, even as his own body denies him the most basic of functions. As his voice deteriorates, he becomes more driven. His mind is like a runaway train on all cylinders, defying the limits of what he can physically do. His road trip across America is astonishing in how demanding it would be even for a healthy person, but he will not be deterred, no matter the strain. His juggernaut of political activism finally stops when he’s unable to speak on his own any longer and needs inevitable medical intervention to help him breathe and communicate. By that time, he has met all of the Democratic Presidential nominees, and his “Be A Hero” campaign has ignited around the country.

This is not just Barkan’s story but also the story of his family. Director Nicholas Bruckman (TV’s “How We Do It”) and co-writer Amanda Roddy have created an intimate portrait of an incredibly strong bond between Barkan and his wife, Rachael King. King is truly remarkable in raising a son and then becoming pregnant with a second child while also working as a tenured professor and supporting her husband in his activism. The scenes of the couple raising their adorable toddler, Carl, together are especially heart-wrenching. Barkan says he wants his son to be proud of him, and it is impossible to think he wouldn’t be.

“Not Going Quietly” is at its most powerful in depicting the coalescence of a movement that impacted the US midterm elections and probably the 2021 presidential elections as well. Barkan inspired many to be a part of the change they wanted to see happen in their country. In one especially gripping scene, Ana Maria Archila confronts Flake in an elevator about his vote to appoint Brett Kavanaugh to the US Supreme Court. She later embraces Barkan, who tells her he will never forget the day for as long as he lives. Neither will many of us, and Ady Barkan will not be forgotten, either.