The Covid-19 pandemic fuels a particular fear in David Molina—a father and also the son of elderly parents, whom he often finds himself reminding to be careful when they leave the house.
But during this time, Molina, who serves as chair for the Santa Cruz County Commission on Disabilities, has also spent a lot of time thinking about members of the nation’s disabled community. He notes that, whenever there’s a shortage of life-saving technologies or drugs, doctors start making calculations about who will get which treatment.
Those calculations, he says, take into account quality of life, and they often favor younger and non-disabled Americans.
“When there’s a disabled person and a non-disabled person, if a doctor only has one drug, who does he give it to?” Molina asks. “No one thinks about this level of terror.”
Additionally, many Americans with disabilities are medically vulnerable, he adds. Some are already unable to live without ventilators, and the spread of a coronavirus poses a serious threat to their health.
With the country celebrating 30 years of the Americans with Disabilities Act (ADA) this week, some Americans are reflecting on three decades of legislation aimed at tearing down barriers. But due to the pandemic, they are doing so privately. The anniversary of the bill being signed into law by President George H. W. Bush came on Sunday, July 26. At one point, members of the local Commission on Disabilities considered putting together a showing of the new Netflix documentary Crip Camp, which chronicles a summer camp for teens with disabilities and their fight for civil rights, but the commissioners ultimately decided against it.
The ADA, which was largely modeled after civil rights legislation of the 1950s and ’60s, prohibits discrimination on the basis of disability—including physical, medical and mental conditions.
Andy Imparato, executive director for Disability Rights California, says the ADA was a landmark piece of legislation, and an update in 2008 issued important clarifications, expanding the number of people the law protects, he says. Nonetheless, the issues are a work in progress.
“We still have work to do in creating the kind of liberty and justice we deserve,” he says.
RAMPING UP ACCESS
For the past 12 years, Veronica Elsea has put accessibility at the center of her time serving on the Regional Transportation Commission’s Elderly and Disabled Transportation Committee.
An avid bus rider, Elsea, who was born blind, says planners often failed to design sidewalks and transportation systems with members of the disabled community in mind. Many, she says, simply assumed that disabled residents would just use Lift Line-type services to get around the county. One problem with that is that, as boomers age, there will be more and more disabled pedestrians, Elsea says.
“There’s a level of disability where you’re still out running around, and I thought it was important that we really start getting Santa Cruz thinking about those people, so that they don’t become in need of the specialized services,” she explains.
Elsea pushed the RTC and its staff to create an online feature for reporting hazards to pedestrians. However, when the Hazard Report page launched, it was incompatible with her text-to-voice software, so she gave commission staff feedback on how to improve it and make it accessible to people like her.
Elsea has first-hand experience with a lot of obstacles. For example, she says that, for years, she was denied the right of a private ballot each Election Day. Instead, when she showed up to a polling place to vote, she had to tell someone else whom she wanted to vote for, and they cast the vote for her.
In one election in Iowa in 1976, she determined that a poll worker was intentionally casting her vote for the wrong party. Elsea says she ended up getting the matter heard before a judge that same day. The issue got resolved, her vote got counted, and the poll worker was banned from working elections, she says.
In a different election in Santa Cruz in 2004, Elsea wanted to vote for a write-in candidate, and she says the poll worker refused to write the name, repeatedly saying that the candidate wasn’t on the ballot. Elsea—who credits the local elections department with doing a great job over the years—complained and quickly got matched with a different poll worker. The second poll worker helped Elsea cast the vote she wanted. “I get to be a rebel if I want to,” Elsea says.
Two years later, the county unveiled accessible voting machines as part of the Help America Vote Act. Elsea got to cast a private ballot for the first time in her life. She was so happy she cried.
When it comes to the ADA, it’s often lawsuits that grab a lot of attention, but Elsea says it would never be her intention—or that of the activists she knows—to start out by assuming an issue will turn into a lawsuit. Rather, the law provides a framework that helps advocates raise concerns and tells institutions how to make their systems more accessible.
“We have a backing. It’s like saying, ‘Here’s the rule, so I don’t have to be the bad guy,” she explains.
The issues around disability are personal for many advocates.
Commission on Disabilities Chair Molina first got involved around disability issues after his son, who’s now 6, was diagnosed with autism. Molina learned that drowning is one of the leading causes of death among autistic children. He didn’t see any leadership in Santa Cruz County to prevent autistic children from drowning.
“We’re a county that has tons of water. And so it surprised me, in a county that’s so affluent and with so much water and with such a beautiful, giant pool, that we didn’t have a program to teach autistic children to swim,” Molina says.
Fellow Commissioner John Daugherty says he believes many people misunderstand the ADA. He feels that Americans pretend the act is a special law that applies to a small subset of people. Daugherty—who has cerebral palsy and works as accessible services coordinator for the Metropolitan Transit District—wishes people would view it as a broader piece of civil rights legislation.
For example, when a business adds ramps to its entrance, and makes the building accessible to people in wheelchairs, that also helps parents with strollers.
Daugherty says he gets frustrated when businesses act like they’re being blindsided by 30-year-old law, mandating relatively small accommodations in the name of crafting a more equal society.
“One doesn’t have to take a sledgehammer to a business layout to make it accessible,” he says.
Rick Gubash, the director of UCSC’s Disability Resource Center, says that, with classes going online, the era of pandemic-related distance learning has shaken up education and created changes—including in the disabled community—some of them more positive than others.
Students with physical disabilities, on the one hand, no longer have to contend with the university’s rugged terrain as they traverse the campus. Similarly, those with chronic conditions, who aren’t always able to attend class in person, don’t have to worry about missing instruction. Everyone’s situation is different, however. Those with organizational difficulties may now have an especially challenging time establishing routines, says Gubash, who has both ADHD and a learning disability.
Although his conditions have presented challenges in his life and career, Gubash says he’s learned how to manage them, and he wouldn’t trade them away for anything. “That’s part of me now, and it’s an important part of me. I embrace my disability,” he says.
Gubash says he’s fortunate to have a great partner and a loving family around to support him, and that makes a difference.
Imparato, the Disability Rights California executive director, has bipolar disorder. Similar to Gubash, he credits his family with providing an immensely valuable support system. For Imparato, every year is split roughly in half, into two modes—his “high-energy” mode and his “low-energy” one, he calls them. Each of his two annual shifts in mood can happen rather suddenly. When he feels a change, he gives his loved ones a heads-up, usually working it into a conversation with his wife, who he says never reacts too strongly.
Imparato pays careful attention not to let bipolar get in the way of being a caring person or a conscientious boss, he says. He doesn’t prefer one mode over the other. Each has its challenges, he says.
“Both modes, for me, have pros and cons,” he says. “When I have more energy, my brain is moving faster, and I’m less patient. Sometimes I can say something and it comes across stronger than I mean it to. I try to be open with my colleagues about the way my brain operates and tell them, ‘Call me on it if you think I’m being unfair or something doesn’t sound right to you.’ I try to be good at apologizing. ”
Gubash says the number of students who use UCSC’s DRC has grown dramatically over the last decade and a half.
I was a DRC student myself during my time at UCSC from 2006-2010—before Gubash’s arrived at the school—due to learning disabilities I was diagnosed with when I was in middle school. (In my time at college, I qualified for services, like extra time on tests and for note taking.) Gubash estimates that the center served 600-700 students back in 2006. He says it serves close to 3,000 now.
I still grapple with attention problems, and I’ve never been a quick reader or a great listener. Whenever possible, I try to record my interviews and carve out time to transcribe them later. I ask follow-up questions whenever I get confused.
Molina, the chair of the local Commission on Disabilities, is severely learning disabled, and he says learning disabilities never go away. Molina says he often has to read a passage five or more times before he understands it, and he has difficulty retaining information. But he never let any of that stop him from getting his PhD in clinical psychology.
Molina says those with disabilities have role models for sources of inspiration. He looks to 17-year-old Greta Thunberg, the Swedish climate activist, who is on the autism spectrum. Molina says Thunberg has the potential to change the world, and he believes nobody—disabled or otherwise—should ever think they’re capable of anything less.
“In order to do what they want to do, those with disabilities have to work that much harder than everyone else,” Molina says. “Having a disability is no excuse to not reach your full potential.”
The documentary Crip Camp is available to watch via subscription to Netflix and for free on YouTube.