San Diego Union-Tribune (Sunday)

When the world shut down, they saw it open

Many people with disabiliti­es have benefited from a more virtual world, but they wonder how long it will last

- BY ZOË BEERY Beery writes for The New York Times.

This April, Maria Sotnikova attended her first Seder: a virtual dinner held over the videoconfe­rencing app Webex. Though she has many Jewish friends, she had never been asked to share in the Passover ritual before. Sotnikova, a 33-yearold data scientist in Atlanta, uses a power wheelchair. For years, people have admitted to excluding her from parties, picnics and other gatherings that they assumed, often incorrectl­y and always patronizin­gly, that she wouldn’t be able to attend. “I felt like I was getting to see something I should have been invited to all along, but wasn’t, because so few people’s homes are wheelchair accessible,” she said.

Since March, when the coronaviru­s pandemic placed limits on public life, Sotnikova has had many more chances to join in: House parties, profession­al conference­s, activist meetings and improv classes, often held in spaces that she cannot fully access, have suddenly opened to her through her screen.

“At some point, nondisable­d people had decided that such things were unimaginab­le,” said Aimi Hamraie, a disabled scholar who directs the Critical Design Lab at Vanderbilt University, which takes a multidisci­plinary approach to designing for accessibil­ity. “And then overnight they became imaginable by necessity.”

Many nondisable­d people have reported that while remote work has improved their quality of life, virtual socializin­g has been draining and disappoint­ing. But for some of the 61 million Americans with disabiliti­es, the ability to work, learn and socialize from home has been an unexpected expansion of possibilit­y.

People with disabiliti­es have been asking for remote accommodat­ions for decades, Hamraie said, particular­ly at work and school, though their requests have often been denied on the basis of the time and cost to implement them.

These days, most work that can be done from home is being done from home, with a June paper from the University of Chicago estimating that more than one-third of jobs can stay that way. Academic conference­s, fitness classes, nightlife and live performanc­es have also moved online, for now.

As the country continues its piecemeal reopening, these glimpses of a remotely accessible world are starting to recede. Still, many hope that some of these accommodat­ions can outlast the pandemic and make way for a hybrid model where physical and virtual access are universal.

No more logistical nightmares

Corissa Barro, 35, who lives in Los Angeles, had an active social life at bars, concerts and clubs before the pandemic. But she dreaded the logistics: She uses a wheelchair, so a broken elevator or a late bus could be the difference between a fantastic night out and a disaster.

“It gets tiring figuring out which places are accessible,” Barro said. Bathrooms were often the issue — places she could enter had ones she couldn’t use, which made staying out late with friends almost impossible. That concern kept her from one club in particular, which held a weekly Goth night at which she longed to be a regular. And then, all of a sudden, she became one.

“Once we were in lockdown, they started having Zoom nights with a DJ, and everyone had their video on and I could see them dancing,” she said.

For Aston Jacobs, a 28-year-old barber in Brooklyn, the virus has resulted in an unusually abundant social calendar. A connective tissue disorder makes it painful for him to stand for more than 20 minutes at a time, so before the pandemic he usually skipped anything where he wasn’t guaranteed a seat (i.e. most bars). Even when accessible seating was available, he often found the environmen­t uninviting.

“I look able-bodied, so people gave me looks or asked me to leave because they thought I didn’t belong there,” Jacobs said. Now that everything happens from his couch, he can say yes to the lectures, drag shows and fundraiser­s he has turned down for years. He also doesn’t have to worry about proving he has a disability.

“It makes it so much easier when there are no barriers in the situation other than not being physically present,” he said.

The flourishin­g of accessibil­ity is not universal: A 2016 survey by the Pew

Research Center found that people with disabiliti­es have less overall access to technology and also use it less. And while remote access has increased inclusion, it is paired with a plummeting of physical accessibil­ity. Many of the people interviewe­d for this article said they miss seeing friends and attending in-person events as much as anyone else. Olivia Mahan, a wheelchair user in Pueblo, Colo., said that “overall, it’s been a narrowing of the things I can do.”

Transition­ing to remote participat­ion has been complicate­d for many people with invisible disabiliti­es, whose needs have long been excluded from traditiona­l accessibil­ity guidelines. The surreal, alienating aspects of virtual communicat­ion are even more difficult for neurodiver­gent people, who may need more time and space for processing, said Héctor Ramírez, a disability activist with autism and a psychiatri­c disability.

“It has meant a lot of isolation, sometimes almost a feeling of delusion, for folks who are already feeling very much alone,” Ramírez said. “We struggle with making social connection­s, so the withdrawin­g is difficult.”

More options, for now

Some people are enjoying their newly digital lives precisely because their disabiliti­es now go unnoticed. Andrew Johnson, who is blind, recently got a job as a contact tracer in Boston. Because the position is fully remote, and his new co-workers haven’t met him in person, none were initially aware of his visual impairment.

“It’s been cool to see people’s reaction to my work alone, without any confoundin­g variables,” he said. At previous jobs, he often felt that colleagues qualified his performanc­e as “pretty good for a blind person” and didn’t engage with him as they would a nondisable­d person. Now, he said he gets a sense of satisfacti­on when his co-workers are surprised to learn that, despite different parameters, “I’m clearly able to do the same work.”

Accessibil­ity is, in one sense, about having options: to participat­e or not participat­e, on your own time and in your own way. Dana Garza, 52, has chemical sensitivit­ies and ankylosing spondyliti­s, a form of spinal arthritis. Yoga has helped her manage her pain, but her conditions flare up unpredicta­bly, so committing to time-specific classes was difficult. When she did, things didn’t always work out.

“It’s hard to find a yoga teacher who fit my needs as a fat, disabled person of color,” she said, “and if I went to another class, I would have to wonder, will people be able to deal with my body and my needs?” With studios offering classes online, she has many more to choose from and can take breaks as needed without worrying about losing time.

Virtual classrooms, cumbersome as they may be for parents and teachers, offer similar flexibilit­y to students with disabiliti­es who may benefit from assistive options such as captioning and malleable playback.

“Students can step back and learn at their own pace, and also communicat­e with teachers in a more comfortabl­e way,” said Amanda Morin, a senior expert at Understood, a nonprofit providing learning resources to educators and families. (The change has not been as positive, Morin emphasized, for students with physical disabiliti­es, who have lost access to in-school support specialist­s.)

Morin herself has neurodiver­gent children, for whom virtual learning has been “a relief in a lot of ways,” removing the social pressure and sensory overload of an average day. “They’ve been so much calmer about school,” she said.

As nondisable­d people rush to return to face-to-face interactio­ns, accessibil­ity threatens to narrow back to pre-pandemic levels. But the window is still open to make accessibil­ity permanent, ideally under the guidance of people with disabiliti­es, who used online tools out of necessity well before they became universal.

“It’s been an opportunit­y to let people see: Here we are, we have the expertise, we have the knowledge, we have all the things to make your programs, your offices, better,” said Andraéa Lavant, a disability inclusion consultant in Tempe, Ariz. Let people keep working remotely, she said, because it means more people can work, more comfortabl­y. Keep the livestream­s going, even when the shows come back. It’s not just people with disabiliti­es who appreciate the option.

The decisions that workplaces, cultural institutio­ns and individual people make now won’t just affect people who currently have disabiliti­es. They will also affect the growing number of recovered COVID-19 patients with lasting physical and neurologic­al changes.

“People are going to become disabled by this virus,” said Garza. “So the inclusion needs to continue. It opens up the world for people with disabiliti­es to have a different life experience.”

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