When I think about how career progression has been different for me than others, as a multiply-disabled person, as cliche as it is, I’m reminded of the tortoise and the hare story. The moral is supposed to be that “slow and steady wins the race.” But I don’t think that’s true. There are many ways that disabled people have been left behind for being too “slow,” or “difficult,” or needing accommodations.
The reality for disabled people is that progression and success is not about linearity or quickness. It’s also not about taking the same routes as everyone else we’re “racing.” We often don’t want to take the same paths, but we also often can’t—physically, mentally and energetically. And it’s not about overcoming either. In an inherently ableist society that prizes pushing through no matter what, and prioritizes those who are abled and already well-off, there is no amount of “resilience” that will put a disabled person in the same positions as others. Instead, progression for disabled and chronically ill people is often rooted in finding fulfillment and reimagining the shape and pace of our careers and, really, our lives (whether they include jobs or not) to reflect the world we want to live in.
“The accepted ways of speaking, dressing, presenting, and more, are rife with ableism and white supremacy,” says Jules Good, a disabled person who manages an accessibility consulting business. Disabled people often can’t—and don’t want to—abide by these standards of “professionalism” that have been set by non-disabled people, which include where we work, how we work (and how we rest) and how we look while doing all of it.
For some, commuting to a physical workplace is a huge barrier. Many disabled people cannot drive or simply cannot afford a vehicle or access reliable transportation. “Combined with a total lack of accessible public transportation infrastructure in most places in the US, this means that getting to a [physical workplace] every day is impossible for some disabled people,” says Good. For other disabled people who do not communicate through speech or have a harder time with it, their access needs are rarely met. These are only some of the barriers that disabled people might face.
With these experiences alone, or when coupled with other hurdles like lack of access to comfortable seating, bathrooms, food, and privacy for attending to medical needs, or accommodations for sensory issues, many disabled people cannot justify abandoning our greatest needs in the name of a career or job.
That being said, no two disabled people—even ones with the same disability—experience life in the same way. So while there are some disabled people who absolutely can’t work a more “traditional” job, whether as a restaurant server, at a 9-5 desk job, or as a construction worker, many disabled people still do.
Phoenix Casino, a hair stylist, says they feel their physical disabilities and neurodivergence are always “teaming up” against them and making it impossible to know how their day will go. “I'm always behind because I'm in so much pain that I can't move around. I have to sometimes miss engagements I’ve committed to, including professional ones.” Graduating college also took longer for them than for others because of their disabilities.
“Under capitalism and in labor situations, being slow is often unacceptable … Progressing through a career and trying to prove you’re worthy of being given an opportunity means having to show that you're ambitious and you really want it and so you're expected to be working overtime, or going to a lot of work and social events or things like that,” Phoenix points out. “And for a lot of disabled people including myself, our bodies and brains just can’t do it. We need to prioritize rest. And that is seen as selfish in some way.”
Now, they work in the beauty industry cutting and coloring hair, and are in cosmetology school to get their license. And while they love what they do, it’s still incredibly physically taxing and inaccessible in many ways. In school, students are expected to be able to be on their feet for four hours or more at a time, and in a salon Casino has heard that it’s expected to stand for many hours with no breaks. It’s also common for stylists to be so booked that they are not able to prioritize drinking water or tending to other basic bodily needs. “Working through it” is considered admirable, Casino explains.
“That really ties into the hustle culture of fitting in as many clients as you can since our income depends on that. It's dangerous even to those who aren't yet disabled,” they say. “I think about how if I had just a tiny bit more internalized ableism I would probably push myself to fulfill these expectations, which would likely cut my career much shorter than I'd prefer, not to mention its effect on my quality of life.” Ultimately, Casino explains that when you’re disabled it’s hard, even impossible, to “prove your loyalty to capitalism.”
"... many disabled people cannot justify abandoning our greatest needs in the name of a career or job."
While some people can choose work they love and make enough to live while doing it, others must simply do “survival work,” as Casino explains. “Housing, education, social networks, mentorship, paid internships, and other career tracks that non-disabled folks can freely access are still few and far between for disabled people of color,” says Sandy Ho, a disabled, queer Asian American community organizer, and director of the Disability Inclusion Fund at Borealis Philanthropy. And because navigating these basics is such a challenge, reaching for anything more can feel impossible.
Growing up, Ho’s parents also warned her about having a job that “made too much” because it would strip away her access to “life-giving support and programs.” For many disabled people who rely on benefits from the government in America, they’re limited to having only $2,000 in assets or savings at a time, or their benefits are taken away. “These kinds of trade-offs and penalizing policies are what fuels so much of my work in disability justice,” says Ho. “A disabled person shouldn’t have to threaten their own well-being to pursue a career, and the so-called American dream remains inaccessible for millions of people.” While a career is a marker of independence and success for some, it brings more hardship for others.
Another person I spoke to, a Black woman with bipolar and PTSD who asked to remain anonymous, found herself spiraling into depression when the pandemic hit, and she felt she had no other choice than to take disability leave. However, over the course of disability leave, her manager encouraged her to simply quit, citing that the position didn’t seem like a “fit” for her. Several jobs later, she saw a pattern. She realized that pushing herself to work without taking care of herself regularly made her bipolar worse, which was severely impacting her job security and her quality of life. “I was held to the impossible expectations that I set during manic episodes, and admonished for not meeting those expectations during depressive episodes,” she says.
Though she’s still looking to pursue work in the corporate world, she feels it’s her responsibility to set appropriate expectations with her manager and ask for any accommodations she needs. But, at the same time, she’s scared about being stigmatized, and having her disabilities weaponized against her if she discloses them to jobs in the first place.
Most job opportunities do not account for the hurdles and rest time that disabled people require in order to keep following their goals while maintaining their health, explains Atta Zahedi, a disability activist. In his personal experience, Zahedi said that he rarely received individual or institutional support when he first began his education in biomedical engineering.
“Long class and laboratory hours wreaked havoc on my mind and body, and the push towards perfectionism and grinding in academia slowly pushed my love for engineering away, because I was constantly damaging myself to stay in it,” explains Zahedi, who did end up working for biomedical companies in more “traditional” roles for a time.
Zahedi eventually left this field because he found it too difficult constantly having to challenge non-disabled people’s ableist perceptions and solutions, as well as their lack of willingness to listen to disabled people. Ultimately, he felt that the companies where he worked were more interested in prioritizing their timelines and profit margins over creating actual positive change. Zahedi now works in disability advocacy and media, “prioritizing the narratives of disabled people, including their needs, troubles, joys, and search for community.” Ho characterizes transitions like Zahedi’s—from trying to fit into a career to choosing our own paths,which often include disability justice and advocacy work—as disabled resistance against “the standard definitions of success.”
“My path—and that of so many disabled BIPOC organizers and activists who I am in community with—distinctly resists, I think, the idea of the [linear] ‘career progression’ that capitalism tries to sell as success. Instead, disabled people often adapt to fill community roles and other needs in our communities.”
That can be hard, especially since many disabled people take on freelance work, where we can provide our own accommodations and make up our own schedules, meaning we still lack systemic and institutional support. But that’s what disabled solidarity is for. “I want other disabled people to know that there are folks in similar positions to you who can help you find resources, share solutions, and provide emotional support,” says Jules Good, the accessibility consulting manager. “You don't have to go through the struggles of trying to work in an ableist world alone.”
Collective liberation from ableism will require not just a reimagined work life, but a reimagined world, says Ho, “one in which we all have what we need to thrive, access joy, and experience safety.” To arrive at this point, we must live our lives from a disability justice framework that “reminds us that capitalism doesn’t determine our inherent worth or value.”
But that work cannot just be incumbent on disabled people alone. We need others, who don’t yet have personal stake in the work, to help us dismantle systemic ableism that makes it harder for us to succeed—or even just have money in the bank and a roof over our head. One of the biggest ways that non-disabled and more privileged people can support their disabled colleagues or create room for future colleagues who might be disabled is to embrace “crip time”, by being more flexible, explains Good. “Be honest with yourself about what things actually need to be done a certain way and which can be done in ways that better meet the needs of your coworkers,” they say, adding, “Rigidity is keeping disabled people out of the workforce. You can help by listening to us and collaborating with us to both accomplish professional goals and create accessible workplaces.”
Equally important in this conversation is working towards economic justice, and “the ways that ableism obstructs [financial stability] for folks whose mind-bodies do not conform to ‘the grind,’” Ho says. “Having access to a living wage and career should be baseline accessible to everyone. A career offers power, presence, financial stability, and access to future planning that you have a say in, as opposed to being relegated to certain bare minimums.”
However, Ho advocates that a career is “only one of several pathways for change. “Change also happens when we are caregivers, mentoring others, organizing, and shifting our own access to power and privilege in ways that pass the mic, or resources, forward.”