Appalachian Theatre of The High Country offered an online showing of Not Going Quietly, a documentary that follows the tireless efforts of a young man diagnosed with ALS. It highlights the highs and lows of his journey and, most importantly, his struggles with the American Healthcare System.
Ady Barkan, as an activist, father, and husband, was quite unprepared for his ASL diagnosis in 2016. He was working his dream job as a social justice advocate, recently married to his wife, Rachael, and a new father to his son, Carl. He described this point in his life as “being on top of a mountain,” thinking it surely cannot get any better than this. Barkan was then hit with the worst news he could have ever received; he was dying with only a few years to live. This shocking news came only one month before the election of President Donald Trump, who pushed a tax bill that would reduce the scope of the health care system, something Barkan was desperately relying on. This is what pushed Barkan over the edge and made him stand up for his cause. He states, “I’ve got a lot to say, and not a lot of time to say it in.”
The film from this point on highlights Barkan’s efforts to advocate for the millions of people like himself that are heavily reliant on their health care and insurance. This is when he met Liz Jaff while boarding the plane home after speaking against the bill in Washington, DC. Together they started the “Be A Hero” campaign. This came after the unforgettable video of Barkan questioning senator Jeff Flake on the plane, which quickly went viral and even received large amounts of news coverage. The pair quickly gathered a group of fellow activists and social justice warriors to travel the country to speak against the tax bill. While they were often ignored, shut out, turned away, or even arrested, the group never stopped fighting for this cause. Due to their efforts on the road, they were able to switch the favor of the House to Democrats, which was a huge win for them.
The forty days that Barkan is away from his family are met with many challenges, but also moments of great laughter and unforgettable memories. The hardest part is seeing Barkan slowly lose the ability to speak, his main way to influence change. Watching his body slowly deteriorate while under the stress of traveling the country is difficult for anyone to see, it allows for the potential to see a new perspective. We are lucky to have films like this that are vulnerable and open others to the hardships faced by so many individuals. It also shows how one person with a strong drive and passion can quite literally change the outcome of a situation with their words and actions.
The director, Nicholas Bruckman, makes sure to include all aspects of Barkan’s journey. Showcasing Barkan’s goofy and unique sense of humor, while also providing the raw and upsetting details, such as doctor appointments and surgeries. Despite the many tears shed while watching, the realness is what makes this a must-see film. It was also the winner of the SXSW 2021 Film Festival for both the Audience Award and the Special Jury Recognition award.
This film is about more than just the life of a dying man. It is about the failures of the American Healthcare System. It is about the fight too many people have to endure. It is about family, friends, and love. With raw, unfiltered insight into the struggles of ALS, Barkan will have you laughing through your tears of sadness, frustration, and utter disappointment in the world, while also encouraging us to ignite change. If you are looking for a film that will make you feel, this is the one.
Not Going Quietly is available to rent or buy on AppleTV, Amazon Prime Video, YouTube, and many other streaming platforms.