Tired of feeling out of sync in workplaces rife with bias and inaccessibility, entrepreneurs with disabilities are striking out on their own.
Filmmaker and founder Frances Rubio’s career initially followed a trajectory that’s familiar to anyone in marketing and advertising. (Full disclosure: Rubio is a friend and former colleague.)
“Pre-pandemic, I felt like I was really climbing the ranks,” she says, before ticking off her previous titles. By the time the pandemic hit, she was a director, leading a department of people she’d never met IRL for a creative agency in Los Angeles.
“The way in which we were working before [COVID]… The margin [for] error was so minimal,” Rubio says. “We already were running at capacity. COVID and the pandemic really just exacerbated that.”
They amplified fissures in her personal life, too. Rubio lives with depression and anxiety. At home, which was now her office, she had assumed the role of being caregiver to both of her parents. (Her mother moved into Rubio’s home during the early days of the pandemic, and Rubio was the primary contact for her father who lived in a locked-down nursing care facility after suffering a stroke.)
Therapy and filming her experiences with her dad helped Rubio process some of her anxiety and grief, but she working on top of everything else was giving her daily panic attacks.
“I definitely had a lot of hard days where I couldn't get out of bed,” she says now. “It was really difficult to cry in the morning, and then wipe my tears away and be present for a Zoom.”
The company’s “top-down” culture didn’t make disclosing her disability feel particularly safe. Rubio's previous employer knew her: They saw pictures of her family at her desk, heard her stories, and saw her “busting my ass as much as I was also trying to keep myself mentally afloat when caring for my dad,” she says.
But being her authentic self didn’t feel possible at her new job.
“In fact, I could probably see it working against me,” she says. “Can this person do the work? Will they need a lot of mental health days? I [didn’t] know if communicating it would help, but I certainly [was] afraid of sharing this information in a workplace where I [didn’t] feel like that's welcome.”
As the pandemic wore on, Rubio‘s values were constantly being “challenged,” she says. George Floyd’s murder made her interrogate being in Corporate America. When her dad got COVID at the end of 2020 and was put on a ventilator, everything shifted into focus.
“Doctors were telling me, ‘You have to say goodbye to your dad,’” she recalls. “When that was happening, and I was still worrying about work, I was like, I need to reevaluate my life and what I want to do.”
Finding work that actually works
What she wanted was to use her marketing experience to amplify the voices of BIPOC filmmakers. Rubio quit her job in February 2021 and started her own boutique marketing agency, High End, that same month. Her first clients were filmmaker Loira Limbal and producer Nicole Docta, the minds behind Through the Night, a critically acclaimed documentary about a 24-hour daycare center in New York City.
Now, Rubio is helping her clients and using her marketing background to support her own projects. Recording for Dodie, her film capturing her 14-month physical separation from her father, is set to debut on PBS and WORLD Channel in May.
“In some ways, I kind of thank my depression and anxiety for calling it out. Like, Truly something is in you that is not happy. It's such a calling to then shift gears and prioritize [figuring out], well, what is it that's going to make me feel balanced and happy?” she says.
For Rubio, answering that question meant joining the Great Resignation—an on-going trend that sees millions of Americans giving notice and quitting their jobs during the pandemic. But it was about more than following her passions or recovering from burnout. It was a matter of making work—and her life—more accessible for her disability.
"I decided I was going to set up my own business, because I’m not going to wait another three years for another job that is not suitable.”
The Pew Research Center shared the top five reasons why Americans left their job in 2021, the same year Rubio did: low pay, no opportunities for advancement, felt disrespected at work, child-care issues, and “not enough flexibility to choose when to put in hours.” Those issues are felt by everyone, but they're even more acute for people with disabilities who face a unique set of barriers to finding (and getting hired for) jobs that meet their needs.
That’s why people across the disability spectrum have used the Great Resignation as an opportunity to explore solopreneurship. According to the U.S. Census Bureau, in 2021, 9.6% of folks who had a disability were self-employed compared to 6.4% of those without.
For some, entrepreneurship offers a reprieve from workplace ableism. Social justice educator Talila A. Lewis defines ableism as “a system of assigning value to people's bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence, and fitness.” These ideals are rooted in all the problematic -isms, Lewis adds: racism, sexism, and colonialism, just to name a few.
“One major issue that people with disabilities face is that of reasonable accommodations, something legally mandated by the Americans With Disabilities Act of 1990,” writes Sharon McLennon-Wier, Ph.D., executive director of the Center for Independence of the Disabled in New York (CIDNY) via email.
“Some people may be afraid to ask for the accommodations they need and are entitled to for fear of reprisal from their employers," McLennon-Wier continues, "and some employers don’t know how to handle accommodations or try to find ways around it. [Entrepreneurship] gives you the freedom to work where, when, and how you want.”
It’s also a potential safeguard against the staggering unemployment rate people with disabilities face. About one million Americans with disabilities lost their jobs during the first year of the pandemic. In America, the unemployment rate for people with disabilities is 10.1% compared to 5.1% for people without—and the disparity exists regardless of education level. It’s slightly less than double in the U.K., where Sulaiman R. Khan lives.
After graduating from university in 2012, it took Khan three years to get his first job—and not, he’s quick to add, for a lack of applying. He eventually had to quit in July 2016, nearly eight months later, due to the company’s inaccessibility. (Khan was also underpaid, a legalized discriminatory practice that still happens to people with disabilities all over the world due to bias about their perceived lower productivity.)
Months later, “I decided I was going to set up my own business,” he says, “because I’m not going to wait another three years for another job that is not suitable.”
Khan founded ThisAbility Limited later that year. His consulting agency helps socially conscious companies “[go] from ableism to disability liberation,” supporting them in creating the types of work cultures Khan would’ve liked to have benefited from before his turn to entrepreneurship.
That said, he prefers having his own business. Instead of trying to follow a one-size-fits-all approach to work, Khan now has “the ability to work in a way that’s wholeheartedly disabled, [that] wholeheartedly allows me to exist.”
“For me to show up wholeheartedly [can look like] laying horizontally with the ventilator. I have a muscle-wasting condition… so to be in an office 9-5, upright, in a wheelchair is not possible every single day,” he says. “If I want to lay down, I lay down. If I need to sit up, I sit up. If I need to snuggle under a duvet, I do that.”
Before Khan works with anyone, he sends out two Google docs that explain who he is and how he works, setting expectations early. He’s not playing by ableist rules.
“Just the ability to say, ‘This is what I value, if you don’t align, go away…’ That’s a very powerful thing for me,” Khan says.
Moving toward inclusion for all
Entrepreneurship’s ability to help people create equitable work conditions can’t be ignored. That said, it’s far from a cure-all and comes with its own laundry list of cons.
“It’s not a decision that should be taken lightly,” McLennon-Wier of CIDNY warns. “There can be drawbacks like the potential lack of a stable paycheck, employer subsidized health care and other benefits, and the responsibility of the business as a whole is on you.”
And as with all experiences and identities, there are intersections where privilege exists. Not everyone can afford the upfront financial costs of starting a business or the possibility of losing services due to making “too much” money. Not everyone has the emotional or physical support of loved ones and caregivers. And not everyone even wants to be a business owner.
The Great Resignation—or, as career and executive coach Jill Griffin calls it, “The Great Reassessment”—is an opportunity for companies to root out ableism and create truly inclusive work experiences for all of their employees.
"... When you have to fight and strive to get [your physical and mental needs] to a minimum baseline, you just go, ‘Is this worth it?"
“It's employees being like, ‘We want to work…but it's got to be under different terms,’” she says.
Before Griffin experienced a severe head injury in 2002, she could keep up with the original terms of her fast-paced, always-on job in marketing. (“I felt like I lived in an Aaron Sorkin screenplay,” Griffin says now, “where there’s this high energy, this banter…”)
Afterwards, though, those expectations were impossible to meet. She was fired from a job for not being able to attend events that triggered the worst of her symptoms. Griffin hid her disability from her next employer for six years. It was only when she reached the C-suite that she felt comfortable asking for “special treatment.”
“Which might mean, ‘Hey, that fluorescent ceiling light that’s been blinking for three weeks is actually giving me a seizure on a regular basis with a vestibular attack. Do we think we could get it fixed?’” she says. “I needed that leverage.”
One shouldn’t have to be in the C-suite to get accommodations. At some point, everyone is going to need support to get their jobs done—whether that’s an ergonomic chair, live closed captioning in Zooms, or a mental health day because it’s somehow 2022. As Khan points out, able-bodied people could just as easily be considered “not-yet-Disabled” as 83% of disabilities are acquired. And we’ve yet to see how those with Long COVID will navigate work.
“If we’re giving everybody the same ability to show up and do their work, then from that starting point we can see what people [can actually] produce.” Griffin says. “But when you have to fight and strive to get [your physical and mental needs] to a minimum baseline, you just go, ‘Is this worth it? Maybe I can work in a different way.’"
Learning to work together and as an entrepreneur
The pandemic has unearthed a lot of truths—one of which is just how much we all need each other to, quite literally, survive. That kind of interdependence is integral to an anti-ableist world, says Khan.
“Even though we don't have the same skills, we compliment each other,” he says. “That's what interdependence is. We support each other. It's healing. It's nourishing. It's regenerative. It allows us to exist as we are, not what we ‘should’ be…. What would that look like in the workplace?”
Disability and neurodiversity recruiting expert Rebecca Beam quit her job in 2021 to offer an answer: Zavikon, a recruiting company that works with candidates and employers to ensure a good match for both. The company offers assessment and culture-fit matching for job seekers and continued education and support for bosses and co-workers.
It’s a mission that was close to Beam’s heart long before she was diagnosed with anxiety, ADHD, and autism. After years of seeing “how this group of incredibly intelligent individuals were being completely overlooked in the workforce and underutilized,” she says, “I really wanted to make [it] my mission to help the unemployment-underemployment rate [and] people who need to be given their opportunity, their first chance.”
In one case, a young autistic man takes long pauses before answering questions. That silence—which can be read as awkward or confusing for an interviewer—is actually the candidate processing what he's heard and thinking of an answer. Once he’s ready, he says exactly what's on his mind.
“We do a process called ‘I interview best when...,’” Beam explains. “I was able to work with the interviewers, and set the stage for the interviews, so that they would understand.” (She also encouraged the interviewee to say “I’m done” when he felt he had answered their questions to avoid another silence.)
After some dogged advocating on Zavikon’s part, the young man will soon be working for an insurance company, making an above-average salary. (That’s especially powerful since folks with disabilities earn 66 cents for every dollar someone without a disability makes.)
Zavikon recently celebrated its one year anniversary. And in that time, Beam and her team have helped people like the aforementioned future actuary find a workplace where they can be their full selves. In starting a business that gives so many people with disabilities their "first chance," Beam has been able to do that for herself, too.
"Where [before] I would bring ideas forward, and I would be looked at, like, Really?, now, I just do it," Beam says. "And you know, what? They work."