This week marks 33 years since the Americans with Disabilities Act prohibited discrimination against people with disabilities in workplaces, schools and a host of other aspects of public life.
While the 1991 federal law has drastically improved the quality of life for many in the disabled community, modern barriers to the accessibility it promised still abound — particularly amid the Bay Area’s housing crisis, emergency disaster planning and rapidly changing technology in the digital age.
Locally, Berkeley is widely credited as a birthplace of the disability rights movement. In the 1970s, disabled residents began transforming both urban landscapes and cultural assumptions, spurring everything from the installation of the nation’s first curb cuts to the landmark Americans with Disabilities Act of 1990.
But in the wake of the passing of two of the city’s pioneering activists, Hale Zukas and Judy Heumann, in the last several months, many of the city’s disabled residents are left reflecting on how — even in a place like Berkeley — the ADA lacks the teeth to combat many accessibility needs.
Tamar Michai Freeman is often left to her own devices in Berkeley, where she’s lived an independent life since 1989 with a progressive neurodegenerative disorder that left her quadriplegic.
She’s asked local officials how they plan to reach and relocate disabled people like her when elevators shut down during wildfire evacuations, power outages or other emergencies. While city planners analyze new bike lanes and parking minimums within developments, she’s often the lone voice requesting solutions for issues unloading her accessible van’s wheelchair ramp without endangering her own safety.
Instead of answers to these questions, she said she’s only heard “crickets.” Requests like Freeman’s to expand accessibility in the 21st century have historically been deemed cost prohibitive and frivolous, while even non-financial initiatives are often hard to implement. For example, Berkeley came under fire in 2019 for advising disabled people who needed assistance during PG&E power shut offs to “use their own resources,” and in 2023, several city board meetings moved to in-person sessions only, without online streaming options or mask mandates.
Rebecca Cokley, program officer for the US Disability Rights program at the Ford Foundation, a nonprofit focused on social justice philanthropy, said Berkeley is one of many cities that cite financial barriers to remediation and take years to tackle accessibility improvements.
“I think cities think about these things after the fact, instead of being thoughtful from the beginning,” Cokley said. “We have to take care of ourselves, because we can’t can’t sit around and wait for a city or other non-disabled people to respond.”
Some progress is being made on the federal level; the 2021 Infrastructure Investment and Jobs Act funded accessibility improvements at transit stations, and legislation introduced last month will explore updates to airline travel for wheelchair users.
Keeping in line with Congress’ clear demand in 1990 that the ADA “should keep pace with the rapidly changing technology of the times,” President Joe Biden’s administration also proposed new regulations Tuesday to increase accessibility standards for state and local government websites and apps, while a bill introduced in the US Senate last year aimed to establish uniform accessibility standards for private employers and other online businesses.
Past disabled activists were heralded for being unafraid, unbowed, unapologetic, candid, irreverent and iconoclastic, Freeman, however, feels that her own stubbornness has made her unpopular in Berkeley.
“We have to stop apologizing for our lives. This is how we navigate the world, and we do a lot of hard work independently,” Freeman said. “As a community, if we’re not visible and vocal, we’ll go back to the beginning of the disability rights movement. We need to do more direct action, because we’re growing older, and we need to show younger generations how things have actually changed.”
Alex Ghenis wasn’t able to stick around as one of those younger disabled voices working to push for something better.
The 34-year-old was president of UC Berkeley’s Disabled Students Union and the disability access coordinator for the university’s student cooperative, before stints working for the World Institute on Disability, a local nonprofit called Sustain Our Abilities and Berkeley’s Commission for Disability.
But none of that advocacy work helped him find any units in Berkeley — a city largely dominated by older, single-family Craftsman and Victorian homes, and years behind its state housing construction goals — that could adequately and affordably check off the list of essential features he needs for daily life as a wheelchair user, such as functional elevators, accessible bathrooms, automatic door openers and centralized air to assist body temperature regulation.
After cross-referencing the city’s Housing Element with 2019 census data, Ghenis said that nearly half of its housing stock was built before 1940, while less than 10% has been constructed since the ADA was passed.
Ghenis finally secured an accessible home next door in Oakland, where new ADA-compliant, multi-family housing has boomed in recent years. However, that meant sacrificing established relationships and vital resources operating in Berkeley; he can no longer call local emergency service provider Easy Does It for around-the-clock help, such as backup attendant care and transportation, since the nonprofit is limited to a relatively small service radius in Berkeley.
“I had to kind of say goodbye to my community, and lost a really life-saving service that enabled more independence when I had to move away from Berkeley — one of the only cities in the country that has that sort of thing,” Ghenis said. “It definitely makes you feel powerless to be priced out because of the logistics of one’s home. It’s pretty rough and heartbreaking.”
Other cities and counties across the Bay Area are continuing to chip away at their own lingering ADA accessibility issues — such as an $11 million renovation at San Jose’s Norman Y. Mineta International Airport and a $689 million overhaul of a 1950s-era correctional facility in the South Bay.
But Berkeley is one of many cities spinning its wheels at improving or even maintaining its existing infrastructure — between the North Berkeley BART station’s perpetually dysfunctional elevator, a dearth of public restrooms, disappearing online city meetings, many dangerously uneven sidewalks and substandard accessible housing options.
Those struggles have left longtime residents like Mary Behm-Steinberg questioning their future here.
Living with Type 1 diabetes, a permanent spinal cord injury and neurological damage, Behm-Steinberg said she has unsuccessfully sounded the alarm over hundreds of thousands of dollars of ADA violations at local homeless shelters, the destruction of inhalers, insulin and wheelchairs during homeless encampment sweeps, and complaints of untenable living conditions inside housing for low-income, disabled seniors.
“It seems to me that we’ve gone from ‘nothing about us without us,’ to ‘everything about us without us,’” she said. “They’re shutting us down at every turn.”
Cokley said a lack of ADA enforcement will remain one of the disability community’s biggest challenges moving forward.
“The ADA doesn’t have a lot of teeth, and typically the way to get remediation is through lawsuits, which is expensive,” Cokley said. “We’re still seeing businesses and communities acting like it’s a new thing, but they’ve had 33 years — that’s a literal lifetime in our community. At what point is that enough?”