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