Hale Zukas, who helped to redefine accessibility for people with disabilities, died of heart failure on Nov. 30 in Berkeley. He was 79 years old.
He was born with cerebral palsy, which significantly impaired his mobility and speech. Zukas’ mother was advised to put him in an institution. Instead, his parents facilitated a full, productive life for him.
Zukas traveled through life in a motorized wheelchair. He used a pointer attached to his helmet to operate his wheelchair and to spell words on a word/letter board. Most people could not understand his speech. He frequently addressed government officials and other groups with a co-worker or personal assistant who translated his speech and supplemented it with reading from his letter/word board.
Graduating with honors from UC Berkeley, where he majored in mathematics and minored in Russian, Zukas began his life work as an advocate for needed services and the elimination of architectural and transportation barriers in communities locally and nationally. In 1970, he effectively lobbied for California’s In-Home Supportive Services (IHSS) Program, the first consumer-directed program to provide attendants in the home to people who needed them. This program has since become partially Medicaid-funded and a model for the nation.
In 1973, when there were protests for the ratification of section 504 of the Rehabilitation Act, prohibiting discrimination on the basis of disability, Zukas was one of the leaders of the movement. He participated in the 20-day sit-in at the federal building in San Francisco and was one of the activists from the Bay Area who successfully lobbied the Carter Administration to release its regulations.
An engineer at heart, Zukas designed the first curb cuts in Berkeley and convinced the Bay Area Rapid Transit (BART) system to become fully accessible. He co-founded the BART’s accessibility advisory group in 1975 and even designed the buttons for inside BART elevators so that they could easily be reached by wheelchair users.
In 2012, Zukas was honored by BART for 40 years of work and advocacy for accessible public transportation. The disability community named the passageway between BART and the Ed Roberts Campus after Zukas, and a plaque was placed there by BART in his honor. Ken Stein, who was at the San Francisco Mayor’s Office on Disability at the time, commented: “In a very real sense, over the decades, Hale has created a passageway between BART itself and the Disability Rights/Independent Living Movement.”
Zukas sat on a number of national and regional committees dealing with accessibility. In 1979 he was appointed by President Carter to the U.S. Architectural and Transportation Barriers Compliance Board (ATBCB, now known as the Access Board), on which he later served as vice chair. For many years he also contributed to the work of the American National Standards Institute (ANSI). He was on the board of the AC Transit Consumer Advisory Board, which meets monthly to discuss ways to make public transportation available to more people.
In 2017-2018, Brad Bailey made a 23-minute award-winning documentary called Hale, about Zukas’ life in Berkeley and his work as a disability rights pioneer. In 2017 the Academy of Motion Picture Arts and Sciences gave its top award in the documentary category for student films — the Gold Medal — to the movie.
“I had the privilege of meeting Hale in 1973 when I joined the Center for Independent Living (CIL) Berkeley board,” said Judy Heumann, an internationally known leader in the disability rights movement. “Over the years, I worked with him at CIL and later, when we created the World Institute on Disability. I admired his brilliance and relentlessness in everything from getting the City of Berkeley to develop a ten-year plan to install curb cuts throughout the city, work on accessible transportation, social security, and being an outspoken leader in local politics. He had a beautiful laugh and smile that always made me laugh and smile with him.”
Zukas was the fourth member of the team that started the World Institute on Disability in 1983. The founders, Ed Roberts, Judy Heumann, and Joan Leon, had worked with him at CIL and made sure that he was the first addition to the team by promising him an assistant, a desk, and a computer for the rest of his life. Zukas worked at WID for 30 years, making important contributions to attendant services, fixed rail, bus, and airplane accessibility and much more.
Joan Leon, co-director of the World Institute on Disability for 13 years, described him as a joy to work with, a person who was “widely admired for his intellect, his analytical mind that enabled him to propose clear and to-the-point solutions to policy issues, his tenaciousness, and his wry sense of humor.”
Zukas was also known for the twinkle in his eye, his passion for trains and movies, and love of live performances. He also loved to drive his wheelchair really fast, taking risks off curbs and down several stairs without ill effects. “Taking those risks was just a normal part of his life,” said his friend Nina Sprecher.
Zukas is survived by his brother Tim, sister Wendy and 30 cousins. Tim was constantly with Zukas during his final days in the hospital, and his cousin Diane was with him when he died. He leaves a great many friends in the Bay Area and nationally. An entire community of activists mourns his loss.
Many members of the Berkeley disability community shared their memories of Zukas. They have been edited for clarity.
Hale was well known for zipping through the streets of Berkeley at top speed. More often than I would have liked, that landed him on the side in the street, with a cut near his eye. And once he flew off the front of the Veterans Building in downtown Berkeley, past several steps. But this did not slow him down. In Washington I was always running after him. As he dashed out of the hotel one morning, the doorman remarked to me: “What spirit!”
Hale had a voracious interest in — well, so many things. He knew the geography, history, and architecture of the bay area from going on every walking tour he could possibly schedule. He loved flying, and on his trips to Washington DC he always secured a seat that gave him an unobstructed view of the terrain below and follow the path of the plane on maps that he had me pin to the back of the seat in front of him.
— Nina Sprecher, dear friend and attendant for 42 years
One time, Hale, Ed [Roberts], Otto, Patrick and I went to the ADAPT [American Disabled for Attendant Programs Today] protests in Reno. Hale had read a shit ton on Poker stats in an encyclopedic book that he put on his board.
He took me out to interpret for him at the blackjack tables. This was 1989.
Might as well have been aliens from Area 51 in those casinos.
I was stoked getting free drinks while Hale gambled.
The dealer was so freaked out.
— Judith Heumann, international disability leader
Hale came to Washington DC in 1977 when Ralf Hotchkiss and I were married, and he was Ralf’s Best Man. He stayed at our house, and one morning he didn’t have anyone to do his personal care to get him dressed, out of bed and into his wheelchair. Ralf, who rides a wheelchair, announced he would do it, and he and Hale grinned, as I said something like I thought they were both nuts. That morning, Ralf went into Hale’s room, and for about 30 minutes, I heard a series of shouts, sounds of exertion and loud thuds which sometimes shook the walls. Then they both emerged, Hale in his wheelchair looking somewhat disheveled and Ralf as well. With big smiles of accomplishment.
— Deborah Kaplan, deputy director of the S.F. Mayor’s Office on Disability
When I was in charge of education through the media at the World Institute on Disability, I landed a segment on KQED’s Radio’s Forum for Hale. I think it was about In-Home Supportive Services (IHSS). The producers were very interested and were ready to book. “Oh, one thing,” I said. “His speech is unintelligible.” They were incredulous. How could they have him on? My response: “How do you have a person on the show who speaks a foreign language? You use an interpreter.” And so, Hale held forth through Nina Sprecher, who was able to say exactly what Hale was saying. You could hear Hale in the background. Through Nina, he was even cracking jokes. Talk about a first for radio.
— Pam Mendelsohn, former World Institute on Disability employee
Such an incredible human being. I remember going out on the streets of Berkeley one day with Hale to take some measurements regarding the street cuts. A little boy maybe 7ish came up to me and asked, “Why do you keep him tied up like that?” I had no answer, but I remember hearing a chuckle behind me.
I feel blessed to have known him.
— William MacGregor, an attendant for Phil Draper, one of the early administrators of CIL, and later the organization’s accountant
In 1969 I started teaching a 100-level class at Cal, and was pleased and a bit surprised that a man in a wheelchair was among the students. The lecture sessions had about 300 students, and then there were smaller sessions. At one of those, I had my first conversations with Hale. He used the letter board and his head pointer, and on those occasions we mostly exchanged pleasantries. Over 52 years, Hale has always been pleasant. Memories of his smile, along with his often tartly accurate comments on society and the world are the only thing that makes his death tolerable.
From Hale, and Nina of course, I learned how to say, “it seems to me” rather than “it is.” Who, after all knows exactly what “it is.” And most importantly, I learned that those of us “temporarily abled” humans, as Hale sometimes referred to me, have a lot to learn from difference. Viva Hale Zukas, a life well spent!
— Dr. Alan Steinbach, Hale’s physician
Hale was an amazing man. I have so many memories. One of the most vivid and dramatic is from a visit from Hale to the rowhouse in Washington DC that Ralf Hotchkiss and I lived in when we were first married. Ralf had a long ramp going out the back door that had a 90-degree angle halfway down where Ralf’s van was parked with the back door meeting that jag in the ramp. So, when the van was there, you could roll down the ramp and go right into the back of the van. But when the van wasn’t there, the ramp just was open at that 90 degree turn. So, Hale went down the ramp when there was no van parked there, and it had rained, so the wooden ramp was wet and slippery. Ralf was right behind Hale, and Hale’s wheelchair began to slide as he approached the end of the first segment of the ramp and the 3-foot drop-off. Hale was visibly freaking out. Ralf reached out and was able to grab hold of one of the motors on the back of Hale’s chair, which wasn’t easy. Hale just flailed his legs and made sounds of distress while Ralf held on until someone came to fix it all. Just one of many Ralf and Hale adventures.
— Deborah Kaplan, deputy director of the S.F. Mayor’s Office on Disability
I remember seeing Hale on the street with a sign on the back of his wheelchair saying, “I am proud to be a Crip.” When I read it, I knew I had moved from New York to the right place, Berkeley, the genesis of the independent living movement and disability rights movement in so many ways.
— Susan Sygall, CEO and founder of Mobility International USA
“People must know that the work Hale started for those with disabilities, here in Berkeley, along with many others like Ed Roberts and Judy Heumann, changed how we all look at the world — from curb cuts, to ramps, to the way we construct buildings. None of that would be here if it weren’t for the work of that group.”
— Brad Bailey, director of Hale