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Pandemic presents additional challenges for people with disabilities

The Press Democrat - 9/20/2020

Sep. 19--When a spooked America locked its doors in March, nearly everyone, it seemed, had a simultaneous thought: This is hard. Many worksites were off-limits. No one could easily mix with friends or go to the movies. Even a stroll around the neighborhood was fraught with risk.

Susan Verde's reaction?

"Literally, welcome to my world," said Verde, 53, who lives in Cloverdale. "I've had to create a life that doesn't involve going out."

Vance Taylor had a similar response.

"Something like COVID comes our way, and I see some of our friends complain they can't go for indoor dining," said Taylor, who grew up in Petaluma and is now chief of the Office of Access and Functional Needs within the California Office of Emergency Services. "They were like, 'I can't handle this.' For me, I call this 'Tuesday,' you know?"

Verde and Taylor both use wheelchairs to get around. They are two of the estimated 80 million Americans who have some form of physical disability. And they were way ahead of most of us when it came to the new demands of social distancing. The shift to remote interaction has even delivered unexpected benefits to some people with disabilities.

But any head start has been outweighed by new layers of hardship imposed by the novel coronavirus and its effect on public health and social interaction. Long accustomed to functioning in a world that doesn't always accommodate them, those with disabilities have had to adapt once again.

Take, for example, public transportation. A lot of people with impaired vision or mobility don't drive. They have come to rely heavily on mass transit. But bus routes have been severely reduced during most of the pandemic, and riding in an enclosed space with strangers is an uncomfortable proposition especially for those with pre-existing conditions.

That has deterred many people with physical impairments from getting tested for the virus. More fundamentally, it has compounded the sense of aloneness that commonly plagues many who live with a disability.

"A lot of what we're seeing is isolation, people feeling this lack of community," said Lake Kowell, program director at Disability Services & Legal Center of Santa Rosa.

Kowell, who has used a wheelchair since suffering a spinal injury in 1989, said her organization used to host monthly gatherings that featured art and roundtable discussions. Those have been replaced by once-a-week Zoom sessions. The disability center also has organized socially distanced hikes in parks, but Kowell said many of clients are struggling to feel connected.

"Most everything's online now," she said. "We have a lot of seniors who have no idea how to access this. And a lot of low-income people can't afford a computer. It's been an issue."

Verde lost access to her adaptive physical education class at SRJC, which had included weight training and sessions in the pool.

"Of course that's going to have an impact on my physical health," she said. "And there's no workaround for that. It might be irreparable in that sense."

People with deeper levels of disability tend to require in-home aides to help clean, dress and feed them, and to monitor medications. That, too, has been affected by the virus, as both patients and caregivers have weighed the health risks of intimate proximity. Kowell said that was always an issue in Sonoma County, even before the pandemic.

"It's very difficult to find in-home support," she said. "What is it, $13 an hour? Not everyone is lining up for those jobs."

Even the recent round of California wildfires exposed existing inequities. Counties have gotten to be fairly efficient at moving threatened residents to evacuation centers and providing for their needs there. But the coronavirus changed the equation for people with disabilities.

"We don't want people to be in a congregant setting," said Taylor, whose office integrates residents with special needs into California's emergency planning. "So we used hotels and motels. That seems better, right? Yes, unless I am experiencing food insecurity. Yes, unless I require assistance toileting or bathing, and my personal care assistant isn't with me. Yes, unless I need special transportation to get to work or to my family."

Particular forms of disability bring specific challenges during the scourge of COVID-19. People using wheelchairs find it hard to maintain distance on city sidewalks and at grocery stores. And you think it's hard for the average citizen to sanitize? Consider propelling yourself by hand.

"I have to do a little extra cleaning with the wheels," Kowell said. "Because I put my hands on those wheels. People spit, cough and who-knows-what on the sidewalk. I have some friends in chairs who just have not left the house."

And as Verde noted, those wheels roll right into your living room. "You can take off your shoes," she said. "I can't take off my chair."

Those with sight impairment face a different set of hurdles.

Kati Aho, director of operations at the Earle Baum Center of the Blind, a Santa Rosa-based nonprofit that serves people with vision loss in four counties, relayed the experience of Dr. Hoby Wedler, a blind chemist, entrepreneur and political advocate. As everyone began to shelter, Wedler was surprised to encounter animosity from some neighbors as he traveled his well-rehearsed route in Petaluma.

"He said, 'Social distancing has been so difficult, because I'm walking with a long cane in front me, and I might pass someone closely. I was surprised how many people were angry with me,'" recalled Aho, who has full vision. "And he's one of the most independent blind people I know."

Many of us carry a mask around or allow the one we're wearing to dangle below the chin when we're safely spaced. That's harder to negotiate when you can't see someone coming, so a lot of blind people feel obliged to mask up every minute they're out in public.

Aho also mentioned Jeff Harrington, Earle Baum's director of technology. Harrington, who is sightless, uses a guide dog for navigation.

"He says we haven't trained them to socially distance," Aho said. "When he does his walks, the dog doesn't think about weaving him in and out of a crowd."

Those who are deaf have their own frustrations, many of them caused by the prevalence of facial coverings. Lip reading is impossible when the speaker is wearing a mask, and any context derived from facial expression becomes harder to interpret. Masks also make communication harder for people with limited hearing, as voices become muffled behind cloth or paper.

As anyone who has seen the acclaimed Netflix documentary "Crip Camp" knows, disabled Americans have had to fight aggressively for every legal concession they have received. And if they were already feeling ignored before March, the ravages of the virus have provided another stark reminder of their vulnerable status.

The Center for Public Integrity, in partnership with the Daily Beast, reported in April that at least 25 states had policies that could put people with disabilities at the back of the line for critical care if hospitals were to become overloaded. The medical triage plans of six states explicitly allowed doctors to take ventilators from those with disabilities and give them to other patients. Alabama revised its policy after a review by the Department of Health and Human Services.

Taylor insisted that won't happen here, noting Gov. Gavin Newsom stated unequivocally that California would not ration based on disability.

More recently, a bill sponsored by state Sen. Bill Dodd, D-Napa, promised to facilitate quicker transfers from nursing homes to in-home care, a measure that would help the severely disabled as well as the elderly. The bill was formally presented to Newsom on Sept. 9. As of Thursday, he had yet to sign it.

The pandemic hasn't been a one-sided event for people with disabilities. Verde, for one, admits that it has in some ways been liberating.

An active consumer of online content since health factors forced her into a wheelchair five years ago (she prefers not to divulge the precise nature of her condition), she has seen her options multiply since mid-March. Verde has joined remote book clubs, seen close-ups of the brushstrokes of Asian art, watched first-run independent films and virtually toured the Luther Burbank Center for the Arts' sculpture garden. She saw the northern lights via live cam after waiting 72 hours for the moment to happen. Most of that wasn't available before the pandemic.

"I'm very aware of the significant ramifications of what is happening. Life is changing," Verde said. "But immediately what I thought is, the world has now come to me. Everyone's world got smaller. Mine exploded in expansive, beautiful ways."

Given that sort of experience, might the pandemic spark lasting, positive change? People with disabilities have agitated for years for things like wider sidewalks and store aisles, self-opening doors, no-touch soap dispensers and faucets and, most fundamental, the ability to work remotely. It took the worst global health crisis in a century spotlight many of those amenities as valuable for everybody.

Verde is hopeful but pragmatic.

"I don't have as much faith in humanity that there is that sort of insight," she said. "I'm hoping the dollar sign leads the way. If you can teach online yoga to 60 people rather than a studio of 14, isn't that an incentive? I don't know that there will be this giant epiphany."

Taylor, whose wife refers to him as "annoyingly optimistic," is more of a true believer.

"My hope is that we come out a more empathetic society," he said. "We struggled through together and we all had different impacts. You lost your job, someone else lost a loved one, I'm terrified about interacting. We all lost something. If we can look at the humanity of it all, I think we'll be better poised to address our needs collectively moving forward."

You can reach Phil Barber at 707-521-5263 or phil.barber@pressdemocrat.com. On Twitter @Skinny_Post.

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