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Doc Talk: An incurable optimist, a fleeing fugitive, and an undaunted soul

Health care activist Ady Barkan, shown during his arrest at a Capitol Hill protest in 2017.Michael Nigro/Michael Nigro/Sipa USA

Like many progressives, Ady Barkan, the subject of Nicholas Bruckman’s wrenching and exhilarating documentary “Not Going Quietly,” had plenty of reasons to despair when Donald Trump won the White House in 2016 — and then some. Not only did he believe that the country was, in his words, “totally [expletive],” but he’d just been diagnosed with ALS. A recent father, he faced at 32 a life of inexorable physical decline from an incurable, fatal disease and a future in which the ideals he fought for were seemingly doomed. But because of his illness he felt he was not up to the challenge of further activism and instead would focus on his only source of joy — spending time with his wife and son.

Then his insurance company declined to cover the cost of the ventilator he needed to stay alive. At the same time Republicans in Congress were mobilizing to pass a tax cut that would further reduce medical coverage for those who needed it. Barkan realized he had to get involved and headed for Washington to confront Jeff Flake, a Republican senator from Arizona who was considered a swing vote. Turned away from Flake’s office, Barkan took a plane back home and serendipitously ran into Liz Jaff, a fellow activist who told him that Flake was also on the flight. Barkan asked to speak to the senator, who obliged. He told Flake he could be “an American hero” if he voted against the bill.


Flake ended up voting for the tax cut anyway. But Jaff had surreptitiously filmed the encounter, showing Flake squirming as Barkan explains the repercussions of the bill on people like himself. Jaff posted the video online with the hashtag “#FlakesOnAPlane,” and it had gone viral before the flight landed. Barkan and Jaff then came up with their “Be a Hero” campaign, which included Barkan traveling cross-country by bus to campaign against those who had voted to cut health care in Congress and were up for re-election in 2018. The efforts of Barkan and his allies in the movement no doubt helped fuel the so-called “Blue Wave” in which Democrats crushed Republicans in taking control of the House of Representatives.

Ady Barkan and his son Carl.Courtesy of Michael Dwyer

But the grueling campaign took its toll on Barkan physically. His voice grew weaker and his lungs deteriorated. In the film, his doctors tell him he will need a tracheotomy in order to breathe. He will lose the power to speak and he’ll have to rely on mechanical means to do so, as did another famed ALS sufferer, the late physicist Stephen Hawking.


In one heartbreaking scene, Barkan gives a speech and his voice gives out as he repeats the word “hope.” But it also literally shows that he has not abandoned hope; instead he perseveres in fighting for his ideals, an example to his fellow activists not to despair.

“Not Going Quietly” premieres on the PBS television series “POV” on Jan. 24 at 10 p.m. and will be available concurrently for streaming on, the PBS Videoapp, and on all station-branded PBS platforms, including iOS, Android, Roku streaming devices, Apple TV, Android TV, Amazon Fire TV, Samsung Smart TV, Chromecast, and VIZIO. Go to

Suspenseful animation

As the documentaries “Tower” (2016), “Waltz with Bashir” (2008), and “Persepolis” (2007) have demonstrated, animation can paradoxically bring both detachment from and greater impact to subjects involving trauma, horror, and atrocity.


Jonas Poher Rasmussen accomplishes the same in Flee(2021), his suspenseful, deftly structured account of the pseudonymous Amin, a gay Afghan who fled as a teenager from Kabul after the 1988 Taliban takeover. Now safe in Denmark, Amin reluctantly discloses his past to the filmmaker, a friend from whom he has long withheld the details of what happened to him. In what serves as a framing device, Amin tells more and more of the story to the filmmaker while lying on a couch. The process is like therapy, and not just for the subject.

Which indeed seems the case, as the animation reenacts his experiences, with the style alternating from sharply focused and brightly-hued images for the more upbeat moments, to blurry black-and-white for memories that are painful and repressed, to actual film footage for unfiltered realities. It all leads to the revelation of a secret, by which time the viewer has been so drawn into Amin’s experience that the result is cathartic and illuminating.

“Flee” is being shown at the Kendall Square Cinema and the Coolidge Corner Theatre. Go to and

An athlete dying young

Diagnosed at 3 with cystic fibrosis, a fatal, incurable, and debilitating illness, Mallory Smith kept her suffering to herself. Instead she used the little time she had left to achieve excellence and pursue her dreams. Tall, lithe, and athletic (she played on three sports teams), she also excelled academically, and only her family and close friends knew of her suffering and the ordeal of the treatments she had to undergo. But she detailed it in private videos, audio recordings, and a 2,500-page diary, parts of which were published posthumously in her memoir “Salt In My Soul,” which is also the title of Will Battersby’s documentary about her life.


Mallory Smith, the subject of the film "Salt In My Soul," a chronicle of her life and death.Handout

Drawing on these resources, the film is a vivid, heartbreaking, and celebratory portrait of a heroic young woman who undergoes and overcomes unimaginable trials, but with each victory leading to renewed setbacks. The film is also a testament to the inexhaustible dedication of Smith’s parents, who supported her and sought out new medicines and therapies that in the end did not save their daughter but which hold out hope for others with the disease.

“Salt In My Soul” can be seen beginning Jan. 25 on Apple TV/iTunes, Amazon, Google Play, Microsoft/Xbox, Vudu, and InDemand TVOD (Comcast, Spectrum, Cox), DirectTV/AT&T and others. Go to

Peter Keough can be reached at