When Alaina Lavoie, a Boston-based communications manager for We Need Diverse Books, starts her work day, she keeps a strict schedule. She feeds her cats, makes herself breakfast, checks in with her boss from home and then tackles the most time-sensitive tasks first.
According to Eve Hill, a disability rights lawyer with Baltimore-based firm Brown Goldstein Levy, guidance issued in 2002 under the Americans With Disabilities Act specifically identified remote work as a reasonable accommodation employers are required to offer to their employees with disabilities, as long as it doesn’t impose an undue burden on the employer, such as cost. However, it wasn’t until the past decade, when new technology made remote work more feasible, that employers began to widely offer the accommodation.
“It’s now harder to show it’s an undue burden,” Hill said. “Way more jobs we thought required an in-person presence actually don’t.”
Lavoie has Ehlers-Danlos syndrome — a genetic condition that affects the body’s connective tissue and can lead to loose joints, fragile skin and chronic pain — and is autistic. Working remotely allows the self-described queer disabled activist to be productive at times she might not be able to come in the office, such as when she is experiencing pain or sensory overload. At home, she can work in a comfortable setting designed for her disability, she said.
“All my energy before, when I worked in an office, was spent on trying to be physically at work. It was spent on the commute and not having my symptoms get so bad that I’d have to leave midday,” she said.
While some workers scramble to adapt to remote work, Lavoie has perfected it. She sets deadlines for herself so her colleagues know when to expect her work and creates a hard end to her work day.
“I don’t stay logged into my work email, and I don’t have it on my phone,” she said. “After my workday is done, I log out of everything and do something small that lets my brain know I’m not working anymore, like take a walk, meet someone in the city, read a book, listen to music, start on a personal project, begin preparing dinner or watch TV.” On Twitter, she’s been reaching out to followers who might be feeling isolated.
Sarah Blahovec, a political consultant and disability advocate with Crohn’s disease who has worked remotely since the age of 15, also took to Twitter, using the hashtag #CripIsolationTips, to “share the disability/chronically ill community’s knowledge on staying at home.”
“As much as you feel compelled to work in your pajamas, change them from the ones you sleep with,” she advised. She added that anyone with a daily commute should try to replicate that level of movement with a stretching routine or a walk. She also recommended that people living in close quarters set boundaries and agree to work in separate rooms, if possible.
Zipporah Arielle, a freelance writer in Nashville, has also reached out via Twitter to people new to working remotely, sharing her “how-to” guide to being homebound. It includes tips on connecting with people though social media, and which apps to use for delivery and grocery services.
Arielle, who has been homebound for the last four years because of an autoimmune disease, also recommends adding some greenery to one’s workspace.
“Grow something green in your bedroom and bring nature to you, open windows if you can and make sure spaces have as much natural light coming in as possible,” she said via email.
But, even as people with disabilities and chronic illnesses are happy to offer guidance to newly remote employees, some have found their new role frustrating and even ironic.
“Requesting to work from home because of the #coronavirus is what’s called a ‘reasonable accommodation.’ You have disabled people to thank for that,” Imani Barbarin, a Pennsylvania-based communications director for a nonprofit that advocates for people with disabilities, tweeted March 9.
Barbarin, who runs the blog Crutches and Spice, is glad that employees are asking people to work remotely during the pandemic. But she wonders why it has taken “a public health crisis to make things accessible.” While the Americans With Disabilities Act requires workplaces with more than 15 employees to provide reasonable accommodations to both current and new employees, which might include telework, Barbarin, Lavoie and Arielle all said they have been refused accommodations.
“When disabled people have asked for the opportunity to work [or study] from home in the past, we’ve often been denied. Now that this is something that impacts nondisabled people, these accommodations are suddenly available,” Arielle said.
Barbarin hopes new policies instituted during the pandemic will “remodel how people work.” She pointed to tools like Trello, Slack and Zoom, which allow for task management, direct messaging and video meetings.
“These tools could’ve always been available,” she said.
Patrick Cokley, who works for a managed care company in Washington, D.C., and has low vision, encourages employers to use this time to rethink telework as a tool anyone can use and to put planning into it. He has been working remotely for years, sometimes completely remotely, sometimes on certain days of the week.
“Telework is the best tool you can use to maintain any workforce,” he said. He said when employers invest in making remote work happen, people with autoimmune disorders or chronic pain, who might not typically be seen as disabled, can become more engaged in their work.
“Doing [telework] long term takes the same amount of planning as a traditional office setting,” he said. “You need goals, you need to have structure put in place to keep up on deliverables, and you need a way to interact with supervisors.”
Taryn Williams, managing director of the Poverty to Prosperity program at the Center for American Progress, also said current guidance about how to implement social distancing without becoming too isolated will encourage employers to learn best practices in remote communications.
“Having office messaging is important,” she said. “We use Slack. Think about it as the virtual water cooler, so you don’t feel like you’re at home.”
She also pointed to the Job Accommodation Network, which provides employers with tools for accommodating workers with disabilities and has been updated to include remote work guidance in response to the novel coronavirus. “It’s a good technical assistance resource,” Williams said. “It answers a lot of questions managers have, such as how to measure performance.”
Barbarin, for her part, isn’t convinced employers will suddenly offer widespread remote work opportunities after the coronavirus outbreak ends, though she does think the crisis will lead to “reworking the way we think about being in public and what community looks like,” she said.
But she is certain that all eyes will be on any company that might make it difficult for people with disabilities to work remotely after concerns about the pandemic taper. “These companies can’t go backward now.”
Chelsea Cirruzzo is a reporter for Inside Health Policy and a freelance writer for Washington area publications.
