Yes, Disability Is a Culture

by Naomi Ortiz

From “Cripping BorderLore,” a special edition. Read an introduction here.

A foundational element of ableism is a fear of vulnerability. For many people, to celebrate something which encompasses discomfort is incredibly difficult. Nondisabled people mostly relate to disability as something to be ashamed of or inspired by. Both perspectives contribute to disabled people[1] not being seen as part of community and instead, as an exception to it. For disabled people all over the world, celebrating disability culture is a key component of our survival.

Many disabled folks have written specifically about what disability culture entails. Carol Gill delved into the components of disability culture in the mid-1990s. Corbett Joan OToole explores how disability culture shaped a movement of disability activists, artists, and athletes. More recently, in Disability Visability, Alice Wong collected essays from disabled writers on the intersections between disability culture and other cultures. One has only to Google “disability culture” to find lists of books and resources.  

The importance of disability cultural wisdom is found in our stories. But here in the borderlands our stories are rarely told. When they are, they are rarely told by us.

Gatherings are where storytelling happens. Yet, because disabled people require accessibility to participate and because we aren’t seen as culture makers, we aren’t planned for.

When we ask for ramps or American Sign Language (ASL) interpreters, we are told our stories are too expensive to tell. Or we are told our stories take too long when we share them through our own filters and brain processes.

If we could share our stories, we would learn from each other about ingenious ways to survive, living on the canyon’s edge of vulnerability.

Disability community elders share stories of creative resistance birthed from the ways disabled people have learned how to adapt. In 1977, during a 26-day sit-in for disability civil rights at the Health, Education, and Welfare Federal Building in San Francisco, the FBI cut off the phone lines. In this time before cell phones, the FBI thought they stopped disability activists’ communication with supporters outside. Undeterred, Deaf folks signed out of the fourth story window to other Deaf people and interpreters below, who shared updates over microphones to the passing crowd.

Some may say that disability is not a culture. As a society we have taught each other to think of disability as “not normal,” as a bad or negative thing, and that the only solution to disability is to “be cured.” We are taught that if we cannot get into a restaurant or read a menu, it is our problem. In fact, disabled people have nothing to apologize for.

Most of us learn from our nondisabled parents and family members that to survive, we must lie. We are instructed to pretend to not be disabled or to appear as non-disabled as possible. Social service, schools, and other systems tell us that the people who know what’s best for us are professionals, medical staff, physical therapists, case workers, or anyone who isn’t us.

As disabled people, we grow up in a world that teaches us our stories are nothing to be proud of. Unless, that is, we are talking about how our disability never stops us from doing what nondisabled people do. Or about how our difference does not matter. But it does.

We are taught to hate who we are and to pretend we have nothing in common with other disabled people. We are rewarded for reinforcing the narrative: “I’m not like them; I’m overcoming it!” The truth is we are part of a disability community and a culture that gives us so many gifts. Our difference contributes to the power and beauty of diversity.

Disability culture is unique to us, to the ways we work and live. We go slower or faster than nondisabled people. That’s called Crip Time. In order to survive, we need help and when that help is both given and received, that’s called interdependence.

Disability humor pokes fun at the awkward (and sometimes discriminatory) moments of being disabled in the nondisabled world. For example, a cartoon by the late John Callahan, a famous disabled cartoonist, shows a smiling person with two hooks for hands, standing on the sidewalk behind a cup next to a sign: “Will refrain from shaking hands with you – 5 dollars.”

Disability culture is how disability gets politically translated into everyday life. The hundreds of ways we have to ask for help—whether we want to or not—and the ways we find to reciprocate or help others. The humor at some random stranger throwing change in our half-filled coffee cups. Having to plan for everything. And then have a backup plan for each plan. The brutal experience of having little pieces of your humanity splintered away as you try to wedge yourself into a system that is supposed to help you survive. How Crip sex takes all the creativity earned by having to function in oppressive and inaccessible environments (having uncomfortable and awkward conversations, explorations of adaptive equipment, explaining to another person exactly what you want done to your body) and puts it to an amazing use. How we are brave only because we cannot back down from other people’s fear of vulnerability. As I learn from Crip art, I think about how my other communities could gain so much wisdom from disability culture. 

We have so many examples of the ways disabled people have resisted and fought for rights. In 1990, Congress passed the Americans with Disabilities Act after disability activists carried out protests and sit-ins and collected testimony from disabled people from across the country about their experiences trying to work, access businesses, and find accessible housing. In 1988 Deaf students took over Gallaudet University in Washington, D. C. demanding the first Deaf university president.

Lois Curtis and Elaine Wilson, people with intellectual disabilities, brought a suit all the way to the Supreme Court for the right to live in their home and participate in the community. In June 22, 1999, the United States Supreme Court voted in their favor (Olmstead v. L.C.) that unjustified segregation of persons with disabilities constitutes discrimination in violation of title II of the Americans with Disabilities Act.

These examples and others show how we have come together to forge power. People with all different kinds of disabilities continue to march and advocate. That’s called the Disability Rights Movement.

You may still not be sure about disability culture, but I ask you, what would change in Southern Arizona and the borderlands if disability was considered part of cultural diversity? If disability dance, poetry, sci-fi writing, music, and visual art provided endless ways to understand beauty, to describe isolation, create connection, question what it means to be productive, and to imagine a future where interdependence was practiced by everyone?

For me, valuing disability culture looks like this: Going to a club, being welcomed onto the dance floor, dancing next to other disabled and nondisabled people who I don’t know and getting to hang out for a while because the bathroom is accessible. I imagine being able to go to local businesses and art galleries where there are ramps. I envision signage in braille and concerts with quiet stimulation-free rooms. Going to cultural celebrations where not just my Latinx or my Indigenous cultures are celebrated, but also my disability culture. Where all of me can be seen and valued.

Growing up, I was taught by to be so ashamed of who I was. So much so that if I ever saw other disabled people, I pretended I could not see them because I think a part of me worried that if I did, then my friends or family would notice how different I was.

When I was in my late teens, I went to a national disability youth conference. I remember a lot of workshops about policy and Social Security Income (SSI), but what I really remember was being around other disabled young people and not having to pretend to be anyone other than who I was. There was a kind of freedom in this I had never experienced. I did not have to spend all my energy trying to hide how different my body was. We spent evenings talking, our scooters, wheelchairs, canes, crowding the sidewalk. We dragged dining chairs out onto the dance floor and sent some of us ahead to find wheelchair accessible restaurants.

Living in Southern Arizona, where my generation, and generations since, have been taught to try to pass as nondisabled or to ignore those who can’t, I like to dream of what it could be like if our stories were told and valued. What would change? When I’m at a restaurant, and another wheelchair user rolls by me, or when a neurodiverse (autistic) person is next to me at the bus stop, would we feel solidarity in being near each other? What I have learned by witnessing other disabled people’s art and stories is that I am only as free as the disabled person next to me.

Naomi Ortiz is a poet, writer, facilitator, and visual artist whose intersectional work focuses on self-care for activists, disability justice, climate action, and relationship with place. Ortiz is the author of Sustaining Spirit: Self-Care for Social Justice, a book for diverse communities on dealing with the risks of burnout. They were awarded a 2021-2022 Border Narrative Change Grant Awardee from the National Association for Latino Arts and Culture for their multidisciplinary project, “Complicating Conversations.” As a Disabled Mestiza living in the Arizona U.S./Mexico borderlands, they are passionate about organizing with the Southern Arizona Community Care Collective/Colectivo de Beinestar Comunitario. 

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[1] “Disabled people” is used as a cross-disability term and includes people with all different kinds of disabilities.

Resources

For disability community organizing in Arizona:

Direct Advocacy and Resource Center (Arizona)

For more on disability history & culture:

Crip Camp, a Netflix documentary about a summer camp for teens with disabilities
Corbett Joan OToole’s Fading Scars, My Queer Disability History, a memoir of activism in disability, queer, parenting communities
Disability Visibility, a collection of essays by disabled writers, edited by Alice Wong
The Disability Visibility Project Online
Stella Young’s TED Talk: “I’m not your inspiration, thank you very much”