Stuck Inside, but Feeling Free

This article originally appeared in Volume I, Issue II of StoryBoard Memphis Quarterly in March 2022.

The alarm goes off. We get up, brush our teeth, take a shower, get dressed, and walk out the door to start our daily commute. Give or take a few steps, this is what a typical morning routine may have looked like before COVID-19 took over.

But not all mornings are created equal. In fact, for individuals with a physical disability, something as mundane as getting ready for work can become an exercise in patience and a constant source of frustration.

As a lifelong user of a below-the-knee prosthetic device, this has always been my reality. Growing up, I always had to wake up significantly earlier for school so my mother could help me attach my prosthetic leg properly. This process increased in complexity depending on how old the prosthetic was – and how uncooperative I was feeling that morning. As an adult, wearing and maintaining a prosthetic device has only gotten more complicated, and nothing can exemplify that better than my morning routine.

Simple tasks like getting up from bed or taking a shower can become time-consuming if, for instance, I knock my prosthesis out of reach by mistake. Before I can even get dressed, I have to properly put on my prosthetic leg in a process that involves no less than ten different steps. Among them is the need to angle my leg correctly into the prosthetic device to avoid spending the day squirming in pain after every step.

Of course, none of this considers other variables that amputees deal with daily: waking up with a rash or a blister can make wearing a prosthetic an awful time. Minor physical activity like working out can literally change a leg stump in size, making the fitting significantly more uncomfortable.

And then the pandemic started.

Shutdowns, quarantines, and working from home became the norm, and my relationship with work fundamentally changed. Yes, it brought plenty of feelings of isolation and anxiety, but it also brought relief.

Beyond enjoying the already known benefits of working from home, I was now free: no more early alarms so I could get my leg ready for the day, no more “pushing through” the day if I woke up with pain or weakness in my leg. Prosthetic supplies such as cleaning sprays and soothing lotions—specialized items that can cost several hundreds of dollars a year and aren’t typically covered by insurance—were now lasting much longer, saving me money.

I was home, so I could sit—or lay—down to do my work without putting my leg into a tight, hot, and uncomfortable socket all day long. It was a huge stress relief, and I immediately felt a positive impact on my health. My skin radically improved. At the end of the day, I had the energy for chores, exercise, and leisure activities. Pain around my peroneal nerve that has caused me extreme discomfort for years slowly disappeared. It was transformative.

Like so many others, I could not see friends or family in person. I could not go see a movie, eat at my favorite restaurant, listen to live music, or travel anywhere. Yet, my quality of life had improved tenfold.

A better way of doing things

Pre-pandemic, such an arrangement would have been almost unimaginable for me. Previous to March 2020, and aside from the occasional forced snow day, I had worked from home precisely one day in my entire professional career, and it took a swollen leg and several awkward rounds of begging to supervisors before I was granted the privilege.

Disability advocates in the United States, including the National Organization on Disability (NOD), have pushed for flexible work policies for several years. Still, it took a global pandemic to thrust most companies into action.

It has been over 31 years since the Americans with Disabilities Act (ADA) was enacted to prohibit discrimination against people with disabilities in all aspects of public life. But while the legislation is supposed to guarantee equal opportunities, inequality prevails.

About 26 percent of American adults have a disability, and according to the US Bureau of Labor Statistics, they are all more likely to work a part-time job, be self-employed, or be unemployed than an able-bodied person. Today, only 4 out of 10 working-age (25-54) adults with disabilities in the United States have a full-time job, compared to the 79% of all working-age adults, according to the Brookings Institute.

While it’s hard to pinpoint an exact cause for these numbers, they underscore one simple fact: workers with disabilities need all the help they can get to join and stay relevant in the workforce, and remote work is a great step in that direction.

Echoing this sentiment is Isaac Banks, an entrepreneur, IT professional, and former colleague, who knows just how hard it can be to strive for a successful career while managing a disability.

At  eight years old he was diagnosed with Limb-girdle muscular dystrophy, a genetic disorder that causes progressive weakness of the muscles in the arms and legs, predominantly around the shoulders and hips. By the time he turned 11, he needed a wheelchair to get around.

Isaac Banks. Photograph by Pedro Acevedo.

Originally from Johnston City, Illinois, he moved to Memphis in 2017. Not long after that, he joined a local multinational with a contract-to-hire IT role, spending nine months as a contractor before fully integrating into the position as a full-time employee. Due to the severity of his disability, Banks was actually encouraged to work from home after getting hired.

“I worked there for nine months as a contractor, and they said nothing, and yet it was like they saw me for the first time after I got hired and said ‘Oh my goodness, this guy is really disabled!’” said Banks. “I had a bunch of meetings with legal and HR teams, and they pushed for me to work from home full time.”

The difference between going to the office and working remotely was clear in terms of health.

“I kind of got around to working at the office, but it wasn’t easy. I just didn’t go to the bathroom all day, which is terrible for your kidneys. I also just didn’t drink anything all day, which is also terrible for your kidneys. I just didn’t want to need to use the bathroom there because then I would need help, and it was not a situation I wanted,” said Banks. “When I started to work from home, I also started to eat more regularly, to drink more regularly, and I felt better overall. And I think that’s the part most people don’t understand about a disabled person working from home: it allows you to work in an environment where you can work freely and eat freely and not have to constantly be thinking about it while you work. Overall, it is a positive experience.”

Despite this, Banks insisted on working from the office at least two days a week to remain engaged. While working from home had plenty of benefits for his physical and mental health, avoiding the office could negatively affect his career goals. This was especially true pre-pandemic, when most of the company’s workforce was still at the office, and online resources to keep employees engaged were either unavailable or unused.

“From the networking side of how business works, you have to get connections to move up. When I was in the office as a contractor, I made connections with all these other teams. They would see me, talk to me and invite me to reach out later, and maybe they’d bring me onto the team. That’s very hard to do when you are not in the office, and everyone else is,” said Banks. “It was very difficult to keep real conversations and real relationships while being at home, and they were not interested in facilitating this until after the pandemic started.”

With tens of millions of employees now working from home and a dire need to keep employee communication and engagement going strong, the tools to make working from home easier appeared seemingly overnight. Conferencing apps boomed. Telecommuting suddenly stopped being a cool benefit for digital nomads and became normalized.

What can be done

Despite these changes, people with disabilities continue to walk a fine line regarding employment. According to the Bureau of Labor Statistics, the unemployment rate for people with disabilities has more than doubled that of those without, with 9% compared to 4.4% as of late last year. Even with increased flexibility across the board, this disparity is driven by factors such as discriminatory hiring practices, ableism, and lack of access to higher education when most job postings call for a bachelor’s degree. 

For Banks, this apparent flexibility helped, but it wasn’t enough. Due to circumstances beyond his control, he had to move back to his native Illinois. Despite his good performance and the fact that he had been working remotely already, the company denied his request to continue working from there, and he had to abandon his role.

“I would have liked very much to continue working for them here in Illinois, but they said no, you can’t do it. I asked why not, since legal already wanted me to be home five days a week, and they said, ‘We just don’t have the means to do that.’ But now, all of a sudden the pandemic hits, and everybody is working from home all across the country. The option was there the whole time, but they just didn’t want me to do it because it was inconvenient.”

Today, there is very little evidence that offering flexible options can negatively impact a business. In fact, the opposite is true. A pre-pandemic 2019 study from the Harvard Business School had already found that companies can greatly benefit from allowing employees to work remotely: increasing productivity, reducing turnover, and lowering costs.

However, in the pre-pandemic world, this idea seemed too “out there” for many to consider. Just a few years before the world went into disarray due to COVID-19, Banks had welcomed his third child to the family, a blessing by all accounts. But they would soon experience what it meant to lack flexible options at the workplace again.

“He was too young for preschool, and we had no one to watch him, so my wife, who worked in finance, would have to leave work sometimes and come home to be with him. When this happened, she would work at home the last two or so hours of the day. Eventually, her boss noticed and told her that she needed to stay in the office,” said Banks. “She pleaded with him and said, ‘I am doing my job remotely, my calls are being routed to my cell phone, and I am getting everything completely done before the end of the day.’”

An evolving model

As the pandemic winds down, businesses should not just go back to “normal.” Instead, companies should expand and enhance their flexible options. For the disability community, this could mean access to assistive technology like text or out-loud captioning, disability-friendly equipment, the ability to choose between hybrid or fully remote schedules, and geographic freedom. We can be productive at home, and we have proven it.

The next few years could mean a lot for accessibility if, instead of enforcing standards that put people with disabilities at a disadvantage, companies choose to normalize accommodations that have been previously considered emergency-only measures.

When it comes to diversity and inclusion, disability must be part of the conversation. With 1 out of 4 Americans belonging to this protected group, all hiring practices, training programs, business programming, and flexible options must recognize and support people with disabilities and the many challenges that they face. Only then will individuals like Isaac Banks be able to maintain and grow their careers without being forced to neglect their health. 

My remote way of life lasted precisely 18 months. New career opportunities appeared, and I was presented with an excruciating decision between the relaxing status quo or a fantastic chance for growth: if I went back to the office. It was incredibly hard, but I decided that putting my pants back on was worth it for this one, and I don’t regret it.

While the early mornings came back, my new company has embraced many more flexible measures—just not permanently working from home—and these have been more than enough to impact my daily life and reduce some of the disruptions of commuting and generally living with a disability.

Still, I will forever look at the possibility of working from home with loving, longing eyes, and I am hopeful that companies will continue to venture down this path. While work-from-home policies are not a one-shoe-fits-all solution for making work more accessible, they are undoubtedly a very positive first step. 

Ultimately, remote work makes work less disruptive to our lives. It frees you from being at a designated place at a specified time regardless of duties. It lets you be creative with your workspace. If it’s done correctly, it can allow us to maintain a work-life balance. 

As for the Banks family, they ended up losing two positions due to a lack of flexibility. “In the end, my wife’s boss said, ‘You need to go to the office. That’s just what you do; you go to the office to work.’ She had to decide between going to the office full-time or abandoning her position. She lost that job,” Banks said, adding, “From the office or remotely, the only thing that should always matter is whether the job is getting done.

Funding for this project made possible by the Tennessee Arts Commission’s COVID-19 Arts Resilience Grants.

Pedro Acevedo is a communications professional currently working as an Internal Communications Specialist for MAA and an Associate Editor for La Prensa Latina Bilingual News. Originally from Caracas, Venezuela, he is now a proud Memphis transplant. When he isn’t writing, Pedro enjoys traveling, trying new hot sauces and spending time with his two adopted dachshunds, Honey and Missy.

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