At the start of the pandemic, Michele Mashburn found herself maneuvering her pink power wheelchair around a Covid-19 testing site that was blocking the only wheelchair-accessible entrance at her medical care center.

She worried about the heightened risks of getting sick as she weaved around the site crowded by people who suspected they might have the respiratory infection. Bereft of options, Mashburn, the director of the San Jose Peace and Justice Center and a Green Party of Santa Clara County council member, eventually filed a federal complaint about the issue.

She was surprised weeks later when, rather than shifting the testing site's layout, organizers packed up and left, around the same time her complaint was marked “resolved.”

As the worst of the pandemic recedes, Mashburn is among those trying to advance another mission, urging the government to reassess how disability access is considered, especially as elected officials, education and business leaders embrace reopening the region in the quest for “normal.”

“Early in the pandemic, the accommodations of remote work were things people with disabilities have asked for for 30 years, and they were never doable until it affected every single person in the room,” Mashburn says. “We're in this position once again, and the disability community is going to get left behind. Right now is a huge opportunity to get some institutional power for the communities of people with disabilities.”

History Repeats

That institutional power shift may be on its way.

Santa Clara County's Board of Supervisors on Tuesday endorsed the creation of an Office of Disability Affairs within the county’s Division of Equity and Social Justice. The division already houses staff for the LGBTQ community, women’s policy and immigrant relations. A more robust plan for the office, including funding, office layout, oversight and accountability components and outreach plans is to come back to the board for a vote on Sept. 28.

Nearly 31 years after the Americans With Disabilities Act was signed into law, Supervisor Cindy Chavez proposed setting dollars aside for dedicated staff to address gaps in health care, civic access, economic opportunities, education and overall quality of life for South Bay citizens with disabilities. An accountability and advisory board will  help guide a long-term community engagement process. County staff members will be working this summer with the disabled community to set priorities and goals for the public, private and nonprofit sectors.

Following a framework of “nothing about us without us,” more than 70 people with disabilities, parents, health care providers, seniors and other advocates met on Zoom earlier this month to share their personal experiences, hopes and concerns.

“All of these hoops and loops in my life dovetail together to create this melting pot of goo so that even somebody who is born disabled may or may not understand the complexities of what I deal with,” Mashburn says. “It's not, ‘Will I encounter a barrier today?’ It is, ‘How many barriers and what one will derail me?’”

The Centers for Disease Control and Prevention estimates 1 in 4 adults in the United States—61 million people—have a disability. Mashburn thinks that statistic may undercount people whose “internalized ableism” stops them from identifying as disabled, including people with diabetes, ADHD or depression.

“Doing the right thing is one thing, but doing the right thing correctly is a whole other level of commitment to others, and that's what this is about,” Chavez says. “The thing about offices like this is they create the opportunity for us to normalize these changes as they come and really make them part of the fabric of who we are as a community.”

Suit Up

Chavez says she hopes Santa Clara County will become a model for other parts of the South Bay and improve health and safety for disabled people when dealing with law enforcement, economic instability and access to housing.

Mashburn welcomes more accountability, as lawsuits are often the only avenue for enforcement, other than written complaint letters—which she says she intimately knows don’t work.

“The ADA was supposed to be a starting point to create more change,” Mashburn says. “It did create significant change, but it puts the burden onto the people with disabilities to police that system.”

Most people don’t pursue filing lawsuits because of the mess and lack of payout, she adds.

Few governments collect statistics on people with disabilities, but the few data points available paint an ugly picture.

People with disabilities are twice as likely to live in poverty in the United States and more than 33% more likely to experience food instability, stemming from the impacts of inaccessible education and job discrimination on earning abilities. In 2019, 27% of Americans with disabilities lived in poverty—defined as $25,750 for a family of four.

Additionally, law enforcement disproportionately stops and uses force against the disabled community, according to a study by the Ruderman Family Foundation, whether folks have autism, asthma, hearing loss or untreated mental health conditions.

Most of these disparities are more severe for disabled women and people of color, the data show. That’s proven true for Genesis Bayan, a ninth grade Gunderson High School student with Down Syndrome.

While Bayan’s physical and cognitive disabilities stem from one of the most common chromosomal conditions, her mother, Dinora Nibez, says language barriers and lackluster documentation within the San Jose Unified School District have left her daughter lagging years behind other peers—unable to read her ABCs or socialize with others.

Nibez says she typically loves coloring and dancing, but has grown more depressed during the pandemic; she’s been left to her own devices, following along to lessons she doesn’t understand without therapy appointments or a specialized education plan

Especially after learning the ease of access other white, English-speaking parents have, she hopes the new Office of Disability Affairs will provide accountability and help combat roadblocks in trying to secure education and evaluation for her daughter.

“I’m frustrated,” Nibez says, translated through Yo Soy Tu Voz founder Veronica Guzman. “We don't have access to those things. We have to fight, we have to sit there, we have to call everyday, we have to demand the things that could be easily provided. It’s simple negligence.”