Meet the Berkeley Man Who Helped Lead the Disability Rights Movement
“Hale” is a new short documentary film about Hale Zukas, who helped make Berkeley the birthplace of the disability rights movement. He was diagnosed with cerebral palsy as a child. He went on to study Russian and math at UC Berkeley in the 1970s and he helped found Berkeley’s groundbreaking Center for Independent Living, which has become a nationwide model.
Filmmaker Brad Bailey made the documentary as his thesis project at UC Berkeley’s Graduate School of Journalism. He just picked up a Student Academy Award for the project, joining some big names like Spike Lee and Robert Zemeckis. He spoke with Sasha Khokha, host of The California Report Magazine. What follows are some excerpts from their radio interview.
On choosing to tell the story of Hale Zukas:
I was heading to school to return some equipment one day, and I saw this interesting man in a wheelchair the courtyard of the journalism school. When I saw him, I could tell that he had overcome a lot of obstacles, despite whatever perceived limitations people may think he has. There was something very witty and very intelligent about him. He’s got a wicked sense of humor, that came out immediately. And then I found out later that he was one of the country’s premiere disability rights activists.
How disability touched Bailey’s own life, and influenced his decision to make the film:
When I was 15, my dad had an accident. He got hit by a Mac truck driving down the expressway. That changed my childhood forever. When that happened, disability affected me and my family firsthand. Disability touches everybody. Nobody is immune from that. No matter your race, your gender, your sexuality, disability is universal. It affects everyone. Hale’s work affected everything from ramp to curb cuts, to the way we build buildings today.
On the challenges of making this film when the main subject can’t speak, but uses a pointer, attached to a helmet, to indicate words on a board:
That was our particular challenge with this film. How do you communicate the brilliance, and wittiness, and insight of a man who can’t verbally communicate? I had to go through my own transformation through my filming with Hale. I learned patience. I learned to sit down and to be able to listen to every single letter he was pointing to and understand what he was communicating to me. I wanted to show in a 20-minute film what I went through in six months. I wanted to obliterate whatever preconceptions people have about people with disabilities. If you get up in the morning and you have life in you, you can achieve whatever challenge that you face.
On why Hale agreed to affix a camera to his wheelchair and have a filmmaker follow him through his day:
Hale is brilliant, and he can also read people. He knew I was going through my own challenge with my own family with disabilities. He recognized there was something I was trying to understand, and understand in him. Hale is a civil rights hero, but his story hasn’t really been out there. His goal was to build an infrastructure where he could move around independently. And now he’s benefiting from the fruits of that labor. I think he allowed me to do this story because he knows it would continue that advocacy and continue to show what people with disabilities are capable of doing.
On California and the Bay Area’s pivotal role in the disability rights movement:
Hale was always there, every single day. He he dealt with the nuts and bolts of advocacy and policy. If you look through the extensive oral history archive at UC Berkeley’s Bancroft library about the disability rights movement, you see that people like Judy Huemann and Ed Roberts were the mouthpieces, but Hale was the workhorse. He started writing advocacy and policy papers from the early 1970s. He was instrumental in the first bill which allowed people to hire and fire their own attendants.
If you look at the San Francisco BART system, for example, Hale was the one they consulted with to design things to be accessible. The buttons on all the elevators were really designed by Hale. He had direct input into things like the height, the location of the button. The Bay Area was used as a model worldwide for transit accessibility.
On a scene in the film when the BART elevator is out, and Hale has to get back on a train to go to a station with a working elevator.
It’s important to show this happens every single day, all over the country. When an elevator is out for you and me that can walk and go up the stairs, it’s no big deal. But for other people, it is. Hale was 40 minutes late to the transit accessibility board meeting on that day when the elevator went out. He was able to relate that experience specifically to the people that make those decisions. He was able to go straight to their ear to affect change.