By Neelam Bohra and AJ Willingham, CNN
Gabe Moses prefers to work his eight-hour shift for a call center while lying on his stomach, resting on a mattress set out on the floor of his apartment.
Moses uses a wheelchair because of conditions including dysautonomia, which arises from a dysfunctional nervous system and can affect major organs, and Ehlers-Danlos syndrome. A connective tissue disorder, EDS can cause chronic pain, muscle weakness and ruptured blood vessels.
Before the pandemic, commuting to work and sitting up for hours at a time left Moses in pain and so fatigued, he sometimes lost his ability to speak. But when he started working remotely while lying down, he discovered his job was easier. He had energy at the end of the day to spend time with his wife, watch movies, read books or even take his dog for a walk by tying her leash to his wheelchair.
At the beginning of the pandemic, Moses said his company made him sign a document that claimed it only offered remote work as an emergency measure, and that it could call him back in person at any time.
Now, as the US continues its uneven reopening and some companies expect employees to return to offices, Moses, who lives in an apartment in New York City, worries the option will be taken away.
“It’s really terrifying to think about going back to that life,” Moses told CNN. “Coming back (from work), I would just go right to bed.”
Accessibility is not one-size-fits-all
In the United States, 26% of adults have some kind of disability, according to the Centers for Disease Control and Prevention. For many, remote work has been more accessible as offices often lack situation-specific accommodations.
These can include wheelchair ramps and certain types of accommodating furniture, safety from allergens, and easy access to medications and bathrooms.
The National Organization on Disability supports flexible work policies above all, said Charles Catherine, associate director of special projects for the organization.
“There will be companies where people will have very little choice, and there will be a lot of peer pressure,” Catherine said. “And there will be other companies for which work culture is a top priority, where there will be more leeway. And so the question is, do you want to be an employer of choice?”
Catherine, who is blind, said he was frustrated at the pandemic’s start because digital accommodations such as closed captioning for online meetings and software that read text out loud were rare. Many companies improved software accessibility over the course of the last year and a half, and Catherine now prefers working from home. But what he went through underscores the varied experiences of workers with disabilities. Working from home may benefit some, but it isn’t a one-size-fits-all solution.
Not to mention, there are plenty of jobs that can’t be done remotely. Those who couldn’t work from home have had to spend the last year and a half battling an impossible choice: risking their life by going into work, or not working at all. Others have seen their jobs eliminated altogether.
In 2020, 17.9% of people with disabilities were employed, down from 19.3% in 2019, according to the US Bureau of Labor Statistics. Meanwhile, the rate of unemployed in this vulnerable demographic actively looking for jobs increased by about 5 percentage points.
“It just continues to show how disposable our system thinks disabled people are, because we’re not contributing to capitalism in the way that people who have more working capability are. But it doesn’t have to be that way,” Moses said. “If the government wanted to just take care of people, so that working wasn’t something they did out of desperation, then they could.”
The community has requested remote work options for years
For many in the community, the sudden availability of remote options has been bittersweet, said Shelby Hintze, a producer for a local news station in Salt Lake City.
Hintze uses a wheelchair because of her spinal muscular atrophy.
“One of the hardest things for me during this whole time has been seeing something that disabled people have been asking for for so long and told it’s not possible — all of a sudden, when everybody else needs it, we move heaven and earth to make it happen,” Hintze told CNN.
For people with conditions that affect their immune systems, Hintze said remote work can alleviate their ongoing risk from Covid-19. Hintze has followed a strict lockdown because she’s at high risk from respiratory diseases like Covid-19, and her company allowed her to work from home without objection.
Even as Covid-19 vaccines allow some to return to a more normal way of life, people with compromised immune systems may not even be fully protected by the vaccine. Data from the CDC revealed the response to the vaccines might be reduced for several high-risk groups.
“People say, ‘There are these immunocompromised people we have to do all these hard things to take care of,’ instead of saying, ‘Wow, your hard life has now been made harder (by the pandemic),'” Hintze said.
Normalizing remote work could help initiate long-term change
Joanna Hanaka also advocates for disability rights on social media and has multiple conditions that make her highly allergic to fragrances. Working from home makes it easier to control her environment, and she has much more energy from not being exposed to allergens, she said.
Hanaka believes companies have seen the benefits of work-from-home arrangements.
“So many people have now experienced the benefits of remote work, such as the time and money saved since they don’t have to commute,” Hanaka said. “Since I’ve begun working from home, I don’t feel so drained by the end of the work day.”
Working from home has had other unexpected benefits. Catherine said people have more control over disclosing their disabilities to bosses and coworkers.
“Everywhere I go, my cane discloses my disability for me,” Catherine said. “But if I met someone on the phone, or on Zoom, I choose to disclose my disability or not and people can’t tell. if I were interviewing (for a job), I don’t know how it would affect the decision on either side. But certainly, I’d have more cards in my hand.”
Moses theorizes the next few months could represent a turning point for accessibility. Or, it could be a missed opportunity. Companies could continue to enforce standards that put people with disabilities at a disadvantage, he said. Or, they could normalize accommodations for these folks that have been previously considered emergency-only measures.
“They’ve proven for the past year and a half that we can do this just as well from home as we could ever do it from an office,” Moses said. “I know there are some people that still go there because they don’t have the ability to work at home. I understand the office being there for people that need it. But there’s not any reason that people that want to work remotely can’t. It would be safer for everyone.”
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