[Cover photo is of award-winning disability activist Alice Wong, the founder of the Disability Visibility Project, who lives in San Francisco. She is wearing red lipstick and smiling under a white oxygen mask attached to her face. Behind her wheelchair is a crop of yellow bamboo.]
Whether you’re disabled or abled, you've heard the tragedy tropes about that poor old wheelchair-bound person, who is white, straight, a man, and either dependent on home caregivers or locked in an institution. If you’re nondisabled, you might have given a few moments to imagining what life would be like if you had certain disabilities that would lead to such a lifestyle, and then decided that you'd be better off dead.
Don’t feel guilty about it – because it’s not an uncommon belief. From birth, white supremacist capitalist patriarchal societies hammer into us that disability is potentially even worse than kicking the can. Having disabled status means you are born – or become – invalid, pathetic, broken. In one word, Other.
A 2021 Health Affairs study revealed that 82% of doctors assume disabled folks must be unhappy, precisely because of their impairments or differences. However, many other studies on the lived experiences of disabled people show that our quality of life parallels nondisabled people's. And yes, I’m writing this as a disabled person, having joined the crip club that anyone can join at any time, when I was 24.
It confuddles abled folks to hear that we are roughly the same amount of happy, or more so. This has been called the "disability paradox" by numerous researchers. To illustrate, one study by Albrecht and Devlieger found that 54% of participants with moderate to severe disabilities reported having an excellent or good quality of life. Hence, paradox. To whom though?
People without lived experience of disability.
So what's it like to live a disabled life well-lived? Well, it’s not becoming another (in)famous trope: that of the inspiration pornstar. While some disabled folks do recover and join abled ranks (once more), it may surprise one to learn that many don’t want a cure even if one was available. One reason for this is that we don't place value on being “normative" in the same way: our normal is more expansive, diverse, and we see the disabled identity as a net positive in our lives.
Did you know that ability, like normalcy, is a human construct? Disability theorist Tobin Siebers calls this obsession with perfecting the body coupled with the denial of our corporeal reality the “ideology of ability”. Think of it as a religious doctrine that underpins the capitalist system. And spare another disabled person from becoming fodder for a motivational story about overcoming; instead, persuade society to adapt to our access needs under the principles of universal design, while embracing human variation. This ends up suiting everyone's needs better, because we are all biodiverse even though some of us try to hide it. You can also practice accepting your bodymind for what it is, which many disabled people find more healthy to do than internalizing hatred of their difference. In Siebers words,
“The value of people with disabilities to themselves does not lie in finding a way to return through medical intervention to a former physical perfection, since that perfection is a myth, nor in trying to conceal from others and themselves that they are disabled. Rather, embodiment seen complexly
understands disability as an epistemology that rejects the temptation to value the body as anything other than what it was and that embraces what the body has become and will become relative to the demands on it, whether environmental, representational, or corporeal.”
Most disabled and nondisabled folks agree that the end goal is not to be good productive workers enslaved to the daily grind. Because of the ableist nature of capitalism, workers join the disabled community because of exploitative situations; what's more, too many disabled people cannot access fair-paying jobs and are therefore excluded from participating in capitalism. These trends are examples of “work as usual”. As seen in the Great Resignation and other social movements, folks are waking up to how this does not, in fact, “spark joy”. 90% of Gen Zers are stressed as fuck, in part because they "do not dream of labouring" within the capitalist market economy. Even epidemiologists such as Eisenberg-Guyot and Prins are proving in their research that capitalism harms workers' mental health, through the mechanisms of alienation, domination and exploitation.
What glorious secrets, then, could the disabled community have to share? “As disabled people, we’re told we don’t deserve pleasure, [that] we just deserve this utilitarian, bland life and we’re lucky not to be dead,” Disability Justice organizer Leah Papuan-Samarasinha said in a recent Jezebel interview. “But a best-kept secret is we are so good at pleasure. We rebel by making these deeply pleasurable lives.”
Disabled people are a wonder, not because we are forced to adapt to ableist society in our complex, magnificent, expensive bodies, but since we find pleasure and joy in doing so. Like the dandelion smiling its way through pavement cracks, we lean towards the sun, knowing we'll find a way through these unfavorable conditions, and we'll make it ours. "Ours" is key here, because there is no disability without community. And no, I am not negating the oppression and suffering that our community experiences, but sketching a more accurate portrait of how our lives look and feel, contrary to shallow media portrayals.
Disability activist Alice Wong (featured in the cover photo) recently commented on our complex embodied realities, by saying;
“I think one of the ways we do stay alive is finding joy in one another. I mean that to mean what's helped me: relationships I have with people, taking time for myself, eating desserts. But yeah, we have to make space for joy and we have to take pleasure in what we can. Because there is joy in being disabled. I think that goes against almost every major idea, or portrayal. If you actually talk to people who have these disabilities, it’s like, “I'm just living my life the best way I can. Just like everybody else.” It's really the expectations people have of us that's really super, super toxic. And that's what needs to be dismantled.”
This joy doesn’t spark alone, but in community. For we recognize what capitalism dismisses: that we're happiest not as independent units of flesh and blood, but as a complex system of interdependent bodyminds, leaning on one another. Growing towards each other. Caring for each other. Through mutual aid, radical acceptance, and the defiant act of turning towards.
Because no matter what anyone says, the real crime is turning away. In my mind, it comes from the impulsive refusal to understand another, lest that understanding change, or improve one’s own existence. Perhaps, by turning towards the disabled community, society can learn how to mitigate climate change, honor each other’s differences, and heal the collective mental health crisis. There are many lessons to be exchanged, and we’re better off learning them together.
If disability is being an outsider, disabled joy is seeing through all the ableist shit that mars society and blossoming from it, something like that overlooked urban dandelion does. And something the fields of dandelions do every June when they stage sit-ins on pesticide-laden lawns, knowing they have a right to take up space to the homeowners' chagrin. It really means witnessing a world from our windows that privileges normalcy over biodiversity, and existing when society would much rather us not. Because when systemic ableism tries to halt your ordinary existence everyday, you value life, more.
A final string of anti-capitalist wisdom from my crip hands: knowing that my bodymind will ripen and wither and rejoin the web of all things, which I never in fact left in the first place…
Meanwhile, I keep living my version of disabled joy, on this sick, mad and disabled Earth.
Did this essay spark something in you? Schedule a tea time chat with me to explore how you can welcome more joy and pleasure into your disabled/nondisabled life.
[Youtube clip is a video poem called Dear Body by queer disabled Latinx advocate, Annie Elainey (she/they). It features them in their bedroom and in the park, making peace with their brown, plus size, disabled body over the course of their lifetime.]
References & Further Reading
Andrews, A. (2022, May 2). How radical acceptance of my disabled body made a mess (and clarity) of my gender acceptance. Disability Visibility Project. https://disabilityvisibilityproject.com/2022/03/16/how-radical-acceptance-of-my-disabled-body-made-a-mess-and-clarity-of-my-gender-acceptance/
Banting, R. (2022, October 4). 'The future is disabled' envisions a world where disabled people aren't a begrudging afterthought. Jezebel. https://jezebel.com/future-is-disabled-disability-justice-book-interview-1849614111
Iezzoni, L. I., Rao, S. R., Ressalam, J., Bolcic-Jankovic, D., Agaronnik, N. D., Donelan, K., Lagu, T., & Campbell, E. G. (2021). Physicians’ perceptions of people with disability and their health care. Health Affairs, 40(2), 297-306. https://doi.org/10.1377/hlthaff.2020.01452
Luiggi-Hernandez, J. (2022, November 3). Capitalism is what’s destroying our collective mental health. Mad In America. https://www.madinamerica.com/2022/11/capitalism-whats-destroying-collective-mental-health/
McBryde Johnson, H. (2003, February 16). Unspeakable conversations (Published 2003). The New York Times - Breaking News, US News, World News and Videos. https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html
Piepzna-Samarasinha, L. L. (2018). Care work: Dreaming disability justice.
Wong, A. (2020). Disability visibility: First-person stories from the twenty-first century. Vintage