Disabled People Have Worked From Home for Years. Why Did It Take a Pandemic for Everyone Else to Start?
Flexibility makes a big difference in inclusion.
In January 2020, my wife and I were contemplating ways to make space in our one-bedroom apartment for a fourth bookshelf to house our growing collection of fiction. She suggested we get rid of one of our two work desks. I shot the idea down. “Imagine if you ever have the chance to work from home more,” I said. “You’re not going to be comfortable sitting on the couch all day, trust me."
A little over two months later, the COVID-19 pandemic began closing everything in Massachusetts, where we live, and my wife started working from home five days a week. I have worked from home since 2017, in a variety of full-time, part-time, and freelance roles. It’s an accommodation for my disability, Ehlers-Danlos syndrome, that I didn’t know I needed until I started my first work-from-home job.
As the pandemic sent many of my friends home with their work too, I began to feel bitter. I’d been turned down for jobs and let go by previous employers when I requested the ability to work from home even one day a week as a reasonable accommodation under the Americans with Disabilities Act, and suddenly everyone I knew with an office job was working from home. Some of the same employers who denied me accommodations were requiring their entire staff to work from home. Workplaces called it unprecedented, but for me and other disabled workers, the ability to work from home is an access need that wasn’t being met until it was necessary for nondisabled workers.
“I had a hard time finding full-time work because of inaccessibility,” Maisha Z. Johnson, a Black woman working in health media who has multiple chronic and autoimmune conditions, explained. “Many companies gave reasons for not allowing their employees to work remotely, including saying that the job required in-person meetings and that they didn’t have the technology to allow for staying connected from home.”
Like me, Johnson was frustrated by how quickly previously inflexible employers were able to shift with the pandemic as motivation. “When the pandemic began and all of these companies suddenly managed to do what they had to do to make remote work possible, it was super frustrating to realize that they could’ve done that all along,” she said. “It feels like it’s now ‘worth it’ for them to make accommodations for able-bodied employees to be able to keep their jobs, but when it was ‘only’ a matter of accommodating disability, they didn’t bother.”
Many disabled workers become self-employed because it’s so difficult to find employers who are willing to accommodate remote work, flexible schedules, and other needs someone might have. “There were so many times in the past when I asked to be able to work remotely more often and was denied, which is one reason why I went freelance,” said Elly Belle, a full-time freelance journalist and writer who has several disabilities, including autism, a heart condition, ADHD, and C-PTSD. “For me, a regular 9-5 schedule that requires me to be in an office every single day doesn't work.”
Emily Ladau, author of Demystifying Disability and a disability rights activist, also became self-employed mostly due to her Larsen syndrome. Some of the flexibility she values has been lost to the nature of the pandemic and its stay-at-home orders, and she misses traveling for work. “As soon as the pandemic hit, I realized that I just liked the feeling of knowing I had the option of leaving my house,” she said. “It’s not just remote work that I value, it’s flexible work that I value and I don’t really have that now in terms of location.”
As an extrovert, that was the most challenging aspect of the pandemic for me, too. I used to leave my home several times throughout the week to eat lunch with friends, to get coffee with others who work from home, to run errands, or to take a long walk outside. I was intentional about creating a routine that separated my work day from the rest of the night, and my weekdays from my weekends. When everything suddenly shifted to staying at home and away from others as much as possible, my mental health suffered and I found myself overwhelmingly burnt out at work.
Similarly, for people like Belle, leaving home to work can make a major difference in concentration or mental health. They said, “It's sometimes hard to motivate myself to get out of bed depending on what's happening with my chronic pain or my anxiety or depression, so having a place to go, even if it wasn't an office, really motivated me to start the day and try to get out of bed.”
Working from home has not been available to everyone during the pandemic, which is one reason it hit marginalized communities such as Black, Indigenous, and people of color harder. “Black and brown folks are underrepresented in positions where working from home is an option, and I’ve felt fortunate to be able to remain in the safety of my home rather than being at risk working with the public in a service position,” Johnson said. Disabled people have also been disproportionately impacted this past year, both because we’re at higher risk for complications from COVID-19 and because so many disabled people have been among the first workers to be laid off amidst the economic impact of the pandemic on businesses.
The privilege of working from home has meant accommodating needs in real time, folding them into the work day like any other task that’ll get met. It’s a net-positive experience that can’t be addressed as directly in an office, or with a commute. Not much of my schedule shifted with the pandemic, aside from sharing space with my wife and scheduling our required meetings around each other. But when I’m working during a high-pain day, she’ll bring me lunch in bed and remind me that it’s okay to take a nap and tell my coworkers I’ll be back in a few hours.
Johnson has what she calls her “pillow fort” for reclining on days when she’s in a lot of pain. Belle has a routine for making sure they eat well throughout the week. Taking care of these personalized details while working from home has made it easier for others in Ladau’s life to understand what her career is actually like. “There was a sudden realization that my style of working was not that unconventional,” she said. “A lot of people have this perception that, ‘You’re so lucky, you get to work from home in your pajamas all day!’ A lot of people had a better understanding of what it is that I do.”
Now that there seems to be an imminent end to the pandemic, at least in highly vaccinated areas, I don’t believe we should go back to the way things were. Instead, we should learn from the opportunities the pandemic has provided and make flexible, remote work an option when it can be. I’ve already encouraged a few of my friends to advocate for regular work-from-home options with their employers moving forward. “What we need to do collectively is not suddenly forget that all of this happened, and not act as if we should return to normal,” Ladau said. “There are a lot of ways in which ‘normal’ was not working.”
Disabled people have always been capable of succeeding at work, but a lack of accessibility shut many people out from finding a job that worked for them. “It should be the norm that we put the health and safety of employees first, and not just in pandemic times,” Johnson said. “We should do it because employees are human beings who deserve to be treated with dignity — not just because we’re needed to help meet the company’s bottom line.”