“It Seems To Me” - The Gift of Uncertainty
—Lucinda Garthwaite, ILI Founder and Directlor
Disability rights activist Hale Zukas, who died in November 2022, is remembered as, “a giant” of social change, audacious and relentless, who “didn’t let things get in his way.” He was among the founders of the World Institute on Disability, co-led countless protests, and flew often from his home in California to Washington DC to lobby for disability rights. Zukas was one of the dozens of other activists with disabilities who famously took over San Francisco’s federal building for 26 days in 1977, refusing to leave until the federal government agreed to enforce civil rights for people with disabilities.
He was widely known for his unsurpassed expertise in public transit, transit funding, and urban design, serving as vice-chair of a board that crafted federal accessibility standards in the 1980s. He designed the first curb cuts in the nation and wheelchair accessible buttons for elevators, and is credited as a “driving force” for accessibility in the San Francisco Bay Area Rapid Transit system.
Recent photographs of Zukas show sparkling eyes and deep creases echoing the smiles of a lifetime. In the wake of his passing, colleagues and admirers remembered those smiles, and Zukas’ infectious laugh. And he also had what one friend called, “a righteous temper.” He could shut down condescension, from people without disabilities who dared to question the expertise of lifelong wheelchair users, with one sharp response.
In the many remembrances that followed his passing, Zukas emerges as an extraordinary organizer and advocate, leaving a legacy of sustained and sustaining change. So, it was especially notable that his physician and friend of over 50 years, Dr. Alan Steinbach, remembered Zukas most for having learned from him, “How to say, ‘it seems to me’ rather than ‘it is.’”
It seems to me insists that the speaker’s perspective matters. Depending on what that perspective is, that can take courage.
It seems to me also qualifies what comes after, signaling that the speaker knows they have only the lens of their own experience, learning, and belief to support what they’re about to say. It leaves room for others to fill in how things seem to them. That leaves room for uncertainty, and requires a different kind of courage.
It’s hard to leave certainty aside because uncertainty is scary -- actually physically scary. Psychologist David Rock goes so far as to say that “Uncertainty feels, to the brain, like a threat to your life.” It’s natural to respond to that threat with certainty, shutting down the possibility that perspectives, beliefs, and decisions other than one’s own could be right.
The problem, suggests public policy and behavioral scientist Morela Hernandez, is that “being certain about the rightness or wrongness of others’ decisions leaves little room for us to grow or expand our understanding, not just of other people but of their situations and their circumstances.”
Hernandez sympathizes with the challenge of tolerating uncertainty, asking, “How can we entertain an opposing view when the “right” choice is so clear to us? It’s painful to consider why someone would make such a “wrong” choice. This psychological pain is real.”
As applied to social change, I’d argue the pain is not only psychological. Choosing the right path forward, the right idea, analysis, policy, or strategy can mean the difference between whole communities thriving, or not; choosing the right way can have literal life and death implications.
That makes certainty even more attractive, but, paradoxically, says Hernandez, it, “limits our ability to make progress,” and can “prevent us from finding a way forward.”
To address this paradox, Hernandez suggests building up a tolerance for uncertainty over time, purposefully and regularly engaging with multiple perspectives. By way of example, she offers an exercise of listening to a media outlet that, “makes you mad. Listen long enough to allow your emotional reaction to stabilize (or subside) so your mind can process what’s being said.”
Hale Zukas’ speech was difficult for most to understand. He often communicated by pointing to letters on a board attached to his wheelchair, using a pointer attached to a helmet on his head. I can only begin to imagine how many times he had to listen to perspectives that made him mad, discounting his prodigious mind, his very right to move through the world.
When she writes about building tolerance for uncertainty in the service of making change, Morela Hernandez invokes a metaphor of a gym workout, conditioning and building physical muscle and flexibility. Zukas’ body wasn’t built for workouts, but if he could say “it seems to me” so well, then clearly, he’d built another kind of strength, another kind of flexibility.
The world is a richer place for that, I think, where far more people can thrive, because Hale Zukas had the courage to say, “It seems to me.”
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References
Remembering Hale Zukas, daring visionary of the disability rights movement. By Joan Leon and Pam Mendelsohn, in Berkeleyside Nonprofit News. December 6, 2022.
‘Disability is not a tragedy’: the remarkable life of activist and rebel Hale Zukas. By Erin McCormick, in The Guardian. January 8, 2023.
Making BART accessible: Hale Zukas pioneered national disability rights from his zooming wheelchair in Berkeley. By Eliyahu Kamisher, in The Mercury News. December 27, 2022.
Resolution Commending Hale Zukas in honor of the 30th Anniversary of the ADA. Board of Directors of the San Francisco Bay Area Rapid Transit District. July 23, 2020.
A Hunger for Certainty. By David Rock, in Psychology Today online. October 25, 2009.
The Problem with Uncertainty. By Morela Hernandez, in MIT Sloan Management Review. September 15, 2021.