Activist Ady Barkan was diagnosed with ALS at 32. Five years later, his tragic but inspiring story is the subject of a new documentary.
Since the moment he was diagnosed with ALS in October 2016, the progressive activist Ady Barkan’s life has been measured out in a string of cruel losses, as the neurodegenerative disease robbed him of one ability after another that he, like most of us, had always taken for granted.
“I do most of my communication using miraculous technology that follows the movement of my eyes … which allows me to use my tablet computer to type out these answers to your questions,” Barkan, 37, writes via email from the home in Santa Barbara he shares with his wife, Rachael King, and their two children. “It’s an exceptionally slow way to communicate but the difference between communicating slowly and not at all is everything.
“Of course, it’s exploitation — what else would it be?” says Jaff, who cofounded the political action committee Be a Hero with Barkan to push for “Medicare for all,” among other progressive causes. “If Ady could be anonymous and not have this horrifically terrible disease, of course that’s what both of us would want. But Ady’s response was, ‘If I’m dying, I want it to mean something.’ ”Bruckman first met Barkan a few months later when he was brought on to make a video to help promote Be a Hero.
“Ady uses his sense of humor to sort of test people out,” says King, a professor of English literature at UC Santa Barbara. “You don’t necessarily expect someone who’s talking through a computer to be making vulgar jokes, so I think it’s a way for him to sort of throw that out there, like ‘This is who I am.’ ALS is a terrible disease but in a way it’s also just a kind of absurd disease. It’sterrible. So sometimes you can just laugh about how absurd it is and that helps a little bit.
“Ady would love to be teaching Carl how to dribble in the backyard, but at least he gets to take him to basketball practice and watch him,” says King. “Carl is starting to learn how to read now. So he’ll stand next to Ady’s wheelchair and watch as Ady’s typing with his eyes and then respond before it even reads the sentence out. They’re starting to have their own little private conversations that way, which is really sweet.