‘Not Going Quietly’: Ady Barkan fights for health care reform after being diagnosed with ALS at 32

If you received just a few more years to live, what would you do? For activist Ady Barkan, he decided to use his remaining time to fight for political change. In 2016, at 32 years old, he was diagnosed with ALS — Lou Gehrig’s Disease — and given three to four years to live. He lost the ability to walk, stand, speak, and finally, to breathe on his own. 

When he first got the diagnosis, he became a political celebrity on the left. It began when he confronted former Arizona Republican Senator Jeff Flake on an airplane. 

“What should I tell my son, or what should you tell my son, if you pass this bill and he cuts funding for disability and I can’t get a ventilator?” Barkan told Flake. “I need you to make your vote match your principles, senator. And for the rest of your life, you will be proud if you vote this bill down.” 

After that, Barkan and other activists barnstormed the country, pressed other politicians to vote against a tax cut that would have meant less money for health care.

Barkan declined quickly on that tour, and it was harder for people to understand him. He had difficulty feeding himself. And he missed his wife Rachael and baby son, Carl, who were home in Santa Barbara.

The documentary “Not Going Quietly” follows Ady Barkan during that tour. 

To communicate now, Barkan uses a computer with eye gaze technology. 

He tells Press Play, “Losing my voice was the worst part of having ALS because I loved to talk. Even as a young person, I leapt at opportunities where I could use my voice in both activism and in art. But I learned early on that having ALS forced people to listen to me with newfound attentiveness. … As ALS has made my voice weaker, more people have heard my message. … I've tried to use the communication methods I still do have to build power for the progressive movement. That feels meaningful.”

The film’s writer/director, Nicholas Bruckman, recalls when he first met Barkan in Santa Barbara: “Ady was somebody with no sense of self-pity, and with an enormous amount of grace and humor … that he was using to turn into a weapon to fight for a better world. … He only had about six months left to speak at that point. And that was the impetus for ‘Not Going Quietly.’”

Bruckman originally planned to make a two-minute video of Barkan. “Then Ady said very soon after, ‘We’re gonna take this show on the road.’ This tactic that I used of catching Jeff Flake on the plane, filming and putting it on social media, and using that to shape discourse and policy, we're going to do this in an RV all over the country, 40 days, 22 states.”

The new plan was to have people with health care stories confront their legislators — to emphasize the stakes of the 2018 midterm election. 

“As a filmmaker, I just thought that was so incredible because what we do in long form is try to make stories that shape our discourse, and ultimately, hopefully change lives and affect policy.”