Hale Zukas, a disability pioneer leaves Bay Area legacy, national impact

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Hale Zukas had a need for speed. In Berkeley, accompanied by his high-velocity wheelchair and trademark helmet, Zukas would zoom down Telegraph Avenue at a sprinter’s pace, his mop of grey hair fluttering in the wind.

Born with cerebral palsy, Zukas had places to be and things to say to policymakers about building a Bay Area that is accessible to all. Despite significant speech and mobility impairments, his righteous temper and sharp wit forced them to listen.

“I don’t beat around the bush,” Zukas mused in a 1998 oral history, where he sat for multiple lengthy interviews. He communicated using a wand affixed to his helmet that pointed to letters on a word board. “I know at least as much as anyone about what I’m talking about.”

Zukas died on Nov. 30 at the age of 79, but not before his civil rights activism for people with disabilities shaped the way millions navigate this country’s public spaces.

“People knew that when Hale was speaking, you listened,” said Judy Heumann, a leading disability rights advocate who worked with Zukas in the 1970s. “He really did have a bigger vision.”

From public transit to sidewalks, Zukas’s reach can be felt across the Bay Area.

He designed Berkeley’s first generation of wheelchair ramps in the 1970s as the city became an early model of mobility access. Known as “curb cuts,” these ramps turned local sidewalks from a gauntlet of miniature cliffs to usable pathways for wheelchair riders. His advocacy also pushed BART to become the nation’s first transit system to be fully accessible to people with disabilities.

Among the laundry list of accessibility improvements touched by Zukas are BART’s elevators, which placed their buttons at lower height based on his input.

Zukas’s activism is rooted in 1960s Berkeley. As protesters rallied against the Vietnam war and for free speech, a burgeoning contingent of quadriplegic students also harnessed the city’s unique counterculture environment. At the heart of the movement was the Center for Independent Living, which Zukas co-founded in 1972, under the philosophy that people with disabilities should speak for themselves on matters of advocacy and life choices. Berkeley’s CIL played a pivotal role in altering the urban landscape, shifting cultural assumptions, and would go on to sprout over 400 centers in the U.S.

At CIL, Zukas was arguably the organization’s foremost expert in the nitty-gritty of accessibility policy. He was also skilled at bending bureaucracy to his will.

Memories of Zukas as told by peers and fellow activists are often colored by his iconoclastic approach. Heumann affectionately jibed Zukas as an “old fart” due to his stubbornness and wry humor. Wheelchair designer Ralph Hotchkiss described him as a “wild man” thrilled by the rush of a speeding chair. And Kitty Cone, another prominent activist who died in 2015, praised him as an “unsung hero” whose immense impact was often overlooked due to his speech impairment.

Born in 1943 in Los Angeles, Zukas credited his mother for pushing for his education in the face of a medical establishment arguing he should be institutionalized. “She finally decided that she knew more than the doctors,” said Zukas, who went on to major in mathematics and study Russian at UC Berkeley.

Zukas remained in Berkeley after graduating in 1971. He was there in 1977 when activists staged a landmark sit-in at San Francisco’s federal building, setting the stage for the Americans With Disabilities Act. Under the appointment of President Jimmy Carter, Zukas also served as vice-chair of a federal board that crafted federal accessibility standards in the 1980s.

BERKELEY, CALIFORNIA – DECEMBER 19: A photograph of Hale Zukas with Nina Sprecher is displayed on a communication board along with a helmet and wand used by Zukas on Monday, Dec. 19, 2022, in Berkeley, Calif. Zukas’s communication tools will be sent to the Smithsonian (Aric Crabb/Bay Area News Group) 

Underneath Zukas’s confident politicking lay deep-seated insecurities. His perennial frustrations over the revolving door of personal assistants upon whom he relied to feed and clothe him often boiled over in exasperation. “I see myself as a mass of contradictions,” he said in interviews stored at UC Berkeley’s Bancroft library. “On the one hand, I’m very activist in trying to influence various issues, sometimes being very assertive about it. On the other hand, I have very low self-esteem, and I don’t like to deal with employment issues at all. Probably because I don’t see myself getting a job.”

The limitations of his disability required him to painstakingly spell out words for people unfamiliar with his verbal queues. But he also saw advantages, describing his approach to advocacy as a form of “mental jujitsu.”

“I imagine when many people see me, they figure I am intellectually sub-par. So when I start talking (about) things that make it clear that I’m not, it makes all the more of an impact,” said Zukas. “And besides, I’m somewhat of a spectacle.”

Zukas embraced spectacle. Before the pandemic, he was a fixture at government meetings, crisscrossing the Bay Area to get where he needed to go.

But to many, the man zooming by in a wheelchair adorned with a “They hate us because we’re pretty” sticker was just another Berkeley eccentric. Even administrators at UC Berkeley, where Zukas frequented lectures, were unaware of his place in civil rights history. That’s according to Brad Bailey, who attended the university’s journalism school and filmed an award-winning 2017 documentary on Zukas.

“He had been overlooked not just in the disability movement, and Hale was very frustrated at that,” said Bailey. While fellow UC Berkeley graduate Ed Roberts emerged as the public face of disability rights, Zukas said he developed a resentment for the media’s anointed “father” of the movement.

“This may be somewhat heretical: For all his great gift of gab, I found him rather superficial,” Zukas said in 1998 of Roberts, who passed away three years earlier and captured the nation’s attention with his life in an iron lung. Although in the same conversation Zukas added that he may have “gone too far” in criticizing Roberts. “After all,” said Zukas. “My first trip to Death Valley was in his van.”

Hotchkiss, who won a MacArthur “Genius” Grant for his work designing wheelchairs, remembers the first time he met Zukas in the early 1970s. They were touring the Washington, D.C., subway together so Zukas could write a report on disability access for Congress.

“Before I knew it, I was hanging on to the back of his high-powered wheelchair racing through Washington and wondering if I’d make it there alive,” said Hotchkiss, who relied on a slower wheelchair. On that day Zukas got into the “dirt of the system” and “smashed through it as best he could.”

“If he could have lived 1,000 years, he would have taken the chance,” Hotchkiss said. “He would have kept on smashing his way.”

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