In 1997, I was born with a lung disease called cystic fibrosis (CF). The disease causes thick mucus to build up in the lungs and pancreas, making it incredibly difficult to breathe, especially while exercising. The mucus also can inhibit absorption of necessary nutrients, making weight gain and digestion laborious.
In order to combat the disease, patients with CF take dozens of pills a day and have to sit through vest treatments and nebulizers to help shake the mucus from the lungs, to then expel it. CF gets worse over time, deteriorating the lungs more and more as you get older. Dealing with it can be its own full-time job.
For people who have disabilities like me—from physical ones affecting mobility to depression, anxiety, autism, and so many others—discussions about working from home aren’t new. Until this year, it was usually work from home or don’t work at all. Before the pandemic, only about 7% of civilian workers in the U.S. could count on employer flexibility allowing work from home, according to a 2019 survey by the Bureau of Labor Statistics. I know this firsthand.
Because the world typically operates in an ableist way, favoring people with traditional abilities over those with disabilities, my perspective and the perspective of others with disabilities has often been forgotten. And, for many of us, the societal effects of COVID, forcing many to do their jobs remotely, have been a blessing in disguise.
The world realized how many people could work from home and do their jobs just as well. (People can even start their jobs remotely and still be successful!) In a report from Mercer, a consulting firm in New York, nearly 95% of 800 surveyed employers said that productivity has remained strong, or even improved. After the health crisis ends, employers expect around 83% of employees to adjust their schedules to work from home at least part-time, according to the same report. This opens so many doors for those who are otherwise a great fit for their jobs.
Living With a Disability
In high school, I was hospitalized numerous times at Masonic Children’s Hospital in Minneapolis. Each hospitalization took me out of school for days, or often weeks, at a time. I had to drop out of high school activities such as school plays and speech and missed my junior prom. Lucky for me, my care team was incredible and accommodated me and hosted a one-of-a-kind hospital prom, complete with formal wear, catered food, decorations, and even a limo.
Throughout high school and as I navigated college at the University of Minnesota Morris, I needed to wake up an hour earlier than my peers to do a vest treatment with nebulizers, as well as throw up and dry heave, due to the nature of my deteriorating lungs not cooperating with me in the mornings. I’d sit over buckets for 20 minutes every morning, waiting for the coughing and vomiting to stop.
I also had to find at least half an hour in the middle of the day to do another treatment to make sure my lungs stayed clear for the whole day. This was especially frustrating when I took an active role in high school activities and in my college community. While the treatments were only half an hour long, they often interrupted the things I had planned for the day.
Early on in college, the realization started setting in that I’d need to find a job that was flexible with my disease. I was worried about working in an office because I coughed all day every day and it would be distracting for others and embarrassing for myself. It would help to work at least part-time from home.
Either that, or I’d have to find somewhere I could have a private room to do treatments—not at my desk, certainly. (And would that mean having to sacrifice a break in order to do a treatment to stay healthy and functional?) Or, I’d have to work part-time, or have some sort of accommodation that would be very hard to get, especially having not yet proved myself right out of college.
During my senior year, a life-changing medicine called Trikafta was approved by the FDA. In the weeks and months following, I learned what exactly it meant for me. My coughing and mucus production came to a halt. My energy levels soared. I was able to run and exercise more than I had ever before, and I could start breathing more deeply than I thought possible. I was able to drop from doing three vest treatments a day to two (with talks of being able to drop down even more in the future), and life got infinitely better, with my CF just a second thought rather than the thing that was constantly on my mind.
Right before COVID-19 hit, I was lucky enough to have secured a remote internship with Greenspring Media, which publishes Minnesota Monthly. Then my colleagues, and people across the globe, experienced a sudden shift to having to work from home. In the summer of 2020, I finished up my internship and started applying for jobs in this new reality.
I was hired by an electric utility company, but I still couldn’t work from home fresh out of college. I had to prove that I was competent enough to do the work before I could take it home. I was in the office three days a week for the first two months while I was training before I was allowed to work almost 100% from home. As a person with an underlying health condition during a pandemic, that was scary!
Luckily for me, Trikafta allowed me to do that. I was healthy enough to go into an office. Without that medicine, I would have still had to look for a job that was flexible and able to be done from home when I graduated college this past May. Those who don’t get a life-changing medicine aren’t so lucky.
The Path Forward
New acceptance for working from home took hold when the conditions affected everyone. Rarely were home-office exceptions made before COVID. (Experts have described a work-from-home “stigma” prior to the pandemic.) Remote work for someone with a disability—someone like myself, or someone with extreme anxiety, for instance—is crucial. Anecdotally, I know people who cannot operate effectively in an office for 40 hours a week due to mental illness. They are incredibly smart and competent, but in order to work from home they had to prove themselves.
We should have been working from home a long time ago. We should have long ago considered adapting the work week from a strict 9-to-5, five-days-a-week schedule, not only for those of us with disabilities, but for everyone. (Especially for working mothers, who often need to choose between keeping their job and giving up much-needed recovery and bonding time after having a child.)
Everyone deserves to work a full-time job if they want. We cannot judge people’s worth and value and give them fewer opportunities based on their abilities or disabilities. We need to be adaptable. That means helping people get a home office set up, giving them a computer, monitor, mouse, and even an office chair that allows them to be comfortable and able to work.
Of course, life isn’t all about work, and yet we’ve made it about that. Our society tells us: If you can’t work, that’s your fault and you need to figure it out. I hope, after the pandemic is over, employers maintain this flexibility and allow people to work from home more than they have. I hope more people can start new jobs from home. Because people with disabilities, growing families, or dimensions to their lives that make a traditional 40-hour schedule untenable still want to work. The world just has to let them.