On October 10 the documentary “Not Going Quietly” became available for viewing online to all students thanks to the Southern Film Circuit, a free program accessible to students through the Clayton Center of the Arts that showcases the works of independent filmmakers. This documentary provides a candid, brutally honest portrayal of what it means to have resilience in the face of debilitating illness.
Directed by Nicholas Bruckman, “Not Going Quietly” documents the story of Ady Barkan, a passionate fighter for social justice and young father, as he navigates his life following a shocking diagnosis of amyotrophic lateral sclerosis (ALS). ALS is a deadly neurodegenerative disease resulting in the degradation of a person’s muscles and eventually total bodily paralysis. As difficult as this film was to watch at times, Barkan’s story is nothing short of extraordinary.
Barkan has committed his life to social justice activism and has spent years fighting for the rights of Americans. Three years prior to his diagnosis, Barkan served as the campaign director for a movement known as “Fed Up,” which is dedicated to fighting for economic justice for people of color and workers’ rights.
One of the initial effects Barkan experienced following his diagnosis was the decline of his respiratory system followed by the gradual deterioration of his voice. To Barkan, this is the most detrimental loss he could experience. From public speeches to confronting elected officials about public affairs, Barkan’s life is defined by his voice.
Despite these unimaginable challenges, Barkan took advantage of his illness by designing a revolutionary campaign committed to advocating for the healthcare rights of folks suffering from chronic conditions. This is spurred on by a proposed GOP tax bill that would gut necessary health care services for Americans like him who are living with chronic illness. During Barkan’s campaign, “Be a Hero,” he and his colleagues traverse the United States to advocate for Americans’ healthcare rights. Their purpose is twofold: to call on Americans to elect officials who will protect Medicare disability and to confront legislators directly about why supporting this tax bill is extremely dangerous to the American people.
Barkan is living proof that every American can use their voice to help mend a broken system.
“The paradox of my situation is that the weaker I get, the louder I become,” Barkan says.
Despite the decline of his physical voice, Barkan refuses to fall silent. Throughout his campaign, he continues to directly confront legislators about their failure to support American democracy, hold rallies, and conduct public speeches despite his voice slowly fading.
Barkan’s message to US legislators is simple: to “recognize [his] humanity” and the humanity of others like him. To Barkan, supporting legislation like the proposed tax cut is a slap in the face to the American people they claim to represent.
This documentary demonstrates that we have the capacity to generate real change in our nation. As American citizens, we have the power to influence our democracy. Barkan embodies this by his ability to speak out against legislation that he feels is unfair despite the pain he experiences.
Viewing this documentary really put my own situation in perspective. Although I speak on the issues I feel strongly about within my own circle, I cannot recall a time where I have actively taken a stand against unfair legislation or social injustice in a way that is truly impactful. As Barkan shows, we as Americans have a civic responsibility to uphold our democracy and take action when we see things that we don’t like. It can be intimidating to muster the courage to use our voice to spark change, but silence is dangerous.
“Not Going Quietly” is available to rent or buy from the Apple iTunes store, Amazon Prime, Youtube, Vudu and more. Visit notgoingquietlyfilm.com for more information.