How Many People Have Prayed for You?

Naomi Ortiz and Alisha Vasquez on Disability Culture, Accessibility, and Finding Liberation

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

Alisha Vasquez: I’m excited to have this conversation with you and to introduce the concept of disability culture to a wider audience. We both have unique understandings of ourselves and what it means to be disabled, or crip, in the Borderlands.

Naomi Ortiz: When did you know you were disabled?

AV: I was born with a short leg. I had my first surgery when I was five, which solidified that I was disabled as I became a wheelchair and crutch user full-time. My disability is intrinsically tied to my Mexican American mother who raised me. She was the person with me at all the surgeries, the hundreds of doctor’s appointments, the thousands of X-rays. I had a doctor once ask me, “Are there any other people in your family that are deformed like you?” The answer is no—I’m the only one that’s “deformed” like me.  

I don’t think my family knew how to treat disability. My mother would always assure people, “Nothing stops her.  Alisha can do anything she wants to do, be anything she wants to be.” These statements, of course, overlooked the fact that there were things I couldn’t actually do. It wasn’t until my 30s when I began to recognize the beauty in slowing down and being disabled.  

There’s a silence and shyness around “otherness,” especially with disability. People still don’t know how to talk to me because there’s this level of discomfort with saying something “wrong.” Every disabled person I know has experienced someone else’s apology or defensiveness after responding to an unsolicited question. Once I walked into a class and the instructor didn’t say hello, welcome, or even ask my name, just said, “Oh, what happened?” Jovially, I said, “NOTHING!” The entire room went silent, and after that no one would make eye contact with me. How did I become the bad guy in this scenario?

I don’t think that twelve-year-old Alisha would have done that, because she just tried to fit in. There were slow steps towards owning my crip consciousness. I’m sure it’s gonna evolve. Since becoming a parent, it’s become harder to get around. As we all age, our mobility changes, and I’m sure ten years from now, it’ll be a different reality than now.

NO: Do you remember when you developed a sense of pride in being disabled?

AV: It was a journey. In college, I studied Chicana feminist theory and have lived my life fully believing education was going to get me out of poverty. I really am appreciative that my mom would say things like, “You can be anything you want to be,” and I knew that wasn’t just regarding my disability, but also my place in life. I didn’t have to get married, have kids, or follow patriarchal, Mexicana traditions. I am grateful for that. But after I became a professor and tried playing these games, it still wasn’t good enough.

NO: What do you mean, it wasn’t good enough?

AV: I was sick a lot. I have had migraines since I was eight years old. I think part of it is being a full-time crutch user and having very tight shoulders. But also, I put pressure on myself to fit into boxes in order to achieve, to blend in. This redonkulous part of me thought people wouldn’t recognize I was disabled if I just stayed quiet enough or didn’t make a fuss regarding my accessibility needs.

NO: We’re literally trained into that through occupational therapy, physical therapy. Doctors, teachers, adults in my life told me, “If you somehow figure out a way to pass, you’re going to blend in, and people aren’t going to notice you’re disabled. Then, you’ll be just like everybody else and have access to things just like everybody else does.” Which is total bullshit.

AV: It took me so long to realize this. I could theorize about all this, but at the end of the day, the amount that I was pushing my body—the extra energy that I had to put forth to get into that room—made me feel unseen by my colleagues because they don’t live the same bodymind that I do. Don’t get me wrong, there was a great degree of solidarity amongst several of my colleagues, but I was pushing myself to meet those systems and structures on which academia is based—calendars, timeliness, production. I realized this dream I’d held since I was 15, to be a professor, just wasn’t worth it. And that was liberating. This newfound Crip liberation is similar to what I found through my Chicana identity. It’s empowering to define for oneself what success is, without enforcing outside expectations or notions of success. This is part of disability culture.

This acceptance of difference is a key component of disability culture.  

-Naomi Ortiz

NO: Any space where disabled people are together, there is disability culture. One of my first experiences of this was with disabled youth from all over the country. It was a very diverse group, folks with intellectual disabilities, learning disabilities, physical disabilities, and autistic folks. One of the kids with ADHD was pacing the room and playing with a ball, bouncing it around. But he was contributing to the conversation—he didn’t have to physically worry about staying still, expending all this energy sitting in a seat. That, to me, was a moment that reflected this space of disability culture. He could be who he was and still participate.

When someone with cerebral palsy speaks with a “CP accent” and has a hard time enunciating their words, we then repeat what we’ve understood them to have said for clarification. This is an example of interdependence in disability culture. Slowing down society’s fast pace to ensure everyone is included or accepting assistance from others or offering it with permission; the philosophy of interdependence asserts that we all have skills and values to contribute to the world.

These interdependent spaces are created because we’re together. To be disabled is to be vulnerable and to need support. We either get to a point of accepting that or we really hurt ourselves in the long term. I feel disability culture right now sitting here with you. I know I have permission to stop the recording to go to the bathroom or to put my feet up if I need to. This acceptance of difference is a key component of disability culture.  

Plus, humor. Disability humor is hilarious and oftentimes something other people don’t recognize.  

AV: Crip humor is the best. How many people have prayed for you?

NO: All the time. Me and my partner (who is also disabled) get this a lot. We’ll be in public, minding our own business, and someone says, “Let me pray for you,” and even touch me without asking permission. 

People have such fear of disability and such fear of vulnerability. Honestly, one of the major issues in society is that we don’t know how to ask for help, or how to give help. This fear of vulnerability is a major component of ableism. 

Disability culture provides a truly incredible lens to support some of the big picture thinking that needs to be happening right now. Consider where we live: the borderlands, with artificial political divisions and all that follows from them. Disability culture has a lot to offer the borderlands. We start from a place of acceptance of difference. Interdependence and vulnerability are integral to how we show up with each other and in the world. 

We must be able to find humor in things that really aren’t funny otherwise we’ll only be angry. Disabled people (often by supporting each other) can deal with difficult and complex systems and manage multiple realities in terms of what we need—in the home versus out in the world and actions that take a lot of planning. 

AV: I love that. One way that you digest big-picture, complex realities is through art. Can you talk about that?

NO: I’m self-taught. I could not get an art teacher to teach me art. They took one look at my pulled-in hands and assumed I couldn’t do it. I figured out how to paint by myself. I have a good friend in Tucson who’s also a visual artist and has different kinds of disabilities. We entered art shows around town, but all the entry level galleries—every single one—was inaccessible. If we had been accepted to have art shown in them, we wouldn’t be able to go see the show. 

The arts community in Tucson and Southern Arizona really struggles with knowing that disabled artists are here and are producing some amazing work. We organized our own show to highlight disabled artists of color here. But without efforts like ours, disabled artists are largely excluded in the art scene. My recent grant from the National Association for Latino Arts and Culture offers me credibility as an artist, but it shouldn’t be this difficult for disabled artists to garner credibility.

Disability culture has a lot to offer the borderlands. We start from a place of acceptance of difference. Interdependence and vulnerability are integral to how we show up with each other and in the world. 

-Naomi Ortiz

AV: You mentioned working with youth earlier but now you are an artist and writer. Can you talk about that transition? 

NO: I ran a national youth activist organization for many years. I faced a lot of discrimination there. It was an organization of parents of disabled children, and they were very resistant to even moving from language like “special needs” to “disability,” which is what the young people in the organization were asking them to do. I also hit my own capacity limits. I can look back and be proud of everything those disabled young people accomplished. They produced amazing resources for other disabled youth on dating, on advocating for your rights, on what is disability culture, and did a lot of advocacy for disabled folks.

I also was going through my own transition, feeling called to do something different. I could not shake this idea of self-care as something to help folks stay involved in social justice. Amazing activists were burning out, which got me pondering: How do we make things more inclusive so people can stay and share these amazing skills and gifts? This curiosity resulted in my first book, Sustaining Spirit. 

AV: When I first met you, I just returned home from grad school in the Bay Area, which is the “motherland” of disability as a social justice movement. The people that I learned the most from were outside of any formal disability organization and were often those with the least access to disability accommodations. Meeting these folx, simply sharing space with them, offered me the courage to begin to better advocate for myself. In my experience, it takes a lot of practice to be able to explain your needs to others; it takes courage, planning, and reaching your limits of experiencing ableism. Most disabled people take that beating until they can’t take it anymore.

NO: Absolutely.

AV: And that’s why we come off as angry or gruff, or exhausted or pissed off, or …

NO: Bitter.

AV: This idea of disability as a lens to understand the world is powerful. Being disabled can be a really isolating experience. Especially when there are so many negative connotations associated with us sticking up for ourselves. Once we do so and immerse ourselves in our own language, traditions, artistic expressions—our own disability culture—and find other people who understand this culture, it’s liberating. 

Disability pride is debasing for people who are not disabled or don’t understand the culture.  Non-disabled people sometimes expect you to do what you used to do. For example, I have non-disabled friends who are accustomed to me being able to walk miles because there was a time when I could. But now I can maybe walk a few blocks. Explaining this is a lot of labor. It’s a hard conversation, a very vulnerable space. It takes time to become vulnerable, even with other disabled people. I think you first must get there yourself, understanding and mitigating your own internalized ableism, to really experience and thrive in the culture.

NO: That reality means sometimes we lose friends.

It’s worth going back to what you were talking about earlier, in terms of being told you can “do anything you want to do.” That’s the crux of the disservice: having young people growing up believing that they should be able to do anything that everybody else is doing, instead of understanding that no matter how much that we adapt, and we change, and we “overcome” who we are, we’re still different. Disability pride and culture instead says, “Okay, you are actually different, and that’s okay.”

An organization, festival, or art gallery can’t just say, “Oh, yeah, now we include disabled people.” It must make structural and programmatic changes to include disabled people. 

Including us means a different way of functioning. It often requires actual changes to be made to how this entity was functioning or structured before in order to be inclusive.

This idea of disability as a lens to understand the world is powerful. Being disabled can be a really isolating experience. … Once we immerse ourselves in our own language, traditions, artistic expressions—our own disability culture—and find other people who understand this culture, it’s liberating. 

-Alisha Vasquez

If we enter the world with this analysis, finding our sense of selves, knowing we are different in a way that is just different—not good or bad—then we know we need to advocate for ourselves. It is not individualized personal responsibility; it’s about advocating for ourselves to have self-determination. The best way caretakers can prepare disabled kids for the fight is to teach them how to advocate for themselves, respectfully, appropriately, in lots of different settings.

Community is important. For me, it’s hard to live in the borderlands, where the disability community is not as strongly organized as it is elsewhere. Part of that is cultural—the way our cultures come at disability. Latinx cultures come at disability differently than white culture. I’ve experienced a dynamic within my family and out in the world where we’re supposed to be quiet and never really bring attention to ourselves. It seems there’s always a disabled cousin at the party who is supposed to just sit there and not be “too disabled” or not really impact the space at all.

Faux inclusion happens because we’re there, but we’re not valued or seen as offering something. This dynamic extends to political organizing spaces. I have been involved in organizing spaces, and often, if I can even get in, I’m faced with figuring out my own access needs. This is absolutely backwards to how we need to be politically thinking and organizing. It’s actually impossible for me to provide a lot of access to things for myself by myself. If society held interdependent mindsets, then our political spaces would have more power to impact our collective realities. Disability accessibility isn’t an individual responsibility, it is a group responsibility.

AV: I’ve had employers say, “Oh, just tell us what your access needs are,” without understanding that they’re putting more work on me. If we, as disabled people, do relay our access needs, we are often met with, “That’s too costly,” or “We just can’t make it accessible given the spatial limitations.” And then it’s a negative cycle. Without disabled people, things don’t change, but how do you really make change without disabled people to advocate for change? Again, it’s part of the challenge and isolation that comes with feeling you can’t fully be yourself, or get where you need to be because you can’t get in the damn door.

NO: Absolutely. I had a similar experience where a positive change happened after I spoke up about not wanting to take on the labor for educating folks about making an online space more accessible. The organization contracted with Rooted in Rights to provide training about accessibility in terms of how to make a website more accessible for disabled people, like including image descriptions, screen to text reader capable websites, and large print viewability—some of the basics, right? This is one of the first times that labor didn’t fall on me. They actually took it in and heard what I was saying, which is a rare occurrence.

There are as many different access needs as there are disabled people. We have so much to offer once we get there. Access requests might include: ASL interpreters, seating, having an initial understanding of the area we are going to so we can plan, scent-free spaces, or a quiet stimulation-free space. I think a lot of times people hear “disability culture” and they think about accessibility, because that’s the first step: we have to get in the room to participate.

Accessibility is part of disability culture. It is also a part of Disability Justice, which is how we do mutual liberatory, interdependent work with other oppressed communities. 

AV: I love that you bring up Disability Justice. You and I have existed in the pre- and post-ADA world. On July 26,1990, the Americans with Disabilities Act was signed. Public spaces are now legally obligated to provide equal access to federally funded programs. But in practice, we know that’s not the case. So, when we’re talking about inclusivity, how do we highlight disability culture knowing that culture can’t be legislated?  

NO: Most people don’t realize how relatively recent disability civil rights laws are. I remember my mom standing in a principal’s office with a book in her hand, pointing to the law because when I first went to school, I was put in special education classes because they didn’t know what to do with me. My mom was fighting for me to be mainstreamed. People older than us didn’t have the right to public education. In 1975, the Education for All Handicapped Children Act passed, renamed in 1990 the Individuals with Disabilities Education Act (IDEA), guaranteeing disabled people in the US a right to education. The 1990 Americans with Disabilities Act guaranteed equal access to education. We’re the first generation of disabled people to have the right to go to school. 

The laws that now are supposed to protect us exist because disabled people fought for them. We have ramps on buses because disabled people laid down in the street in front of buses.  Same with the Americans with Disabilities Act, where Justin Dart and his wife, Yoshiko Dart, collected testimonies from disabled people from around the country. Section 504 passed in 1977 because disabled people took over and occupied a building, and Section 504 is literally one phrase in the law that says if something gets federal funding, then it has to be accessible. And the only reason that was enacted at all is because disabled people didn’t leave a federal building for 26 days. The longest sit-in of a federal building in history. It took lots of community support to make that happen.

AV: Including that of the Black Panthers.

If society held interdependent mindsets, then our political spaces would have more power to impact our collective realities. Disability accessibility isn’t an individual responsibility, it is a group responsibility.

-Naomi Ortiz

NO: These are examples of interdependence, mutual liberation, and the power in knowing our history. Disabled folks aren’t taught our history, and we have a lot of power of community organizing.

AV: Where in Tucson are disabled stories told—other than at this table?

NO: I’ve been thinking a lot about that. Until very recently, they weren’t. If they were told, it was by organizations that tried to make money off us. The Muscular Dystrophy Association was based in Tucson for many years. They put together a horrendous fundraiser that was emceed by Jerry Lewis and Jerry’s Kids, which demeaned disabled life and disabled people. Other organizations make money on sharing “our stories,” highlighting how they’re helping us. Of course, some organizations do a lot of good in terms of supporting disabled people’s quality of life. But, we know that our stories are not about how we always need help. 

The University of Arizona Disability Cultural Center was started by disabled staff and students. They put on poetry readings and buy and display art by disabled artists, which helps amplify disability culture in Tucson. But there are not a lot of places where disabled people gather in Tucson. We are in group homes, day programs, but many of us live a very oppressed and isolated existence, still. Where do you see disabled stories in Tucson?

AV: I think back to when I had my surgeries, and the doctors would talk to my parents and not me. To the little groups that they would have for us disabled kids, but we weren’t really allowed to be ourselves or talk. We had to just make art. I honestly don’t see much of a unified disabled culture in Tucson, at least not in the ways that I know it exists in other parts of the world.

The Internet has been where my disabled culture exists. Reaching out to people who I think are interesting, not just because they’re disabled, although that helps. I do think society is shifting to understand that disability exists, and slowly we’re being tokenized less. I really encourage people to do their own research if they’re somehow scared of doing inclusivity “wrong.” There are lots of disabled people who have already spoken about everything you and I have talked about. When non-disabled people research disability inclusion, consult and pay disabled people as consultants, and then implement best practices, it frees up space in disabled people’s lives. We don’t have to take on extra labor. That helps us thrive. Speaking of that, what makes you thrive? What brings you joy right now?

NO: The access I have in terms of disability culture. I love reading poetry by disabled folks and looking at work by disabled artists. I’m seeing a lot more organizing by disabled people of color, which is really amazing and engaging. Collaborating with others makes me feel really supported. What about you?

AV: I think I’m finally being true to myself and not supercripping myself to illness.

NO: Explain what you mean by “Supercripping.” 

AV: Pushing yourself to fit in and thus being seen as inspiring to non-disabled sensibilities.

NO: I understand it as overcoming who you are. Magically. As in, sprout those Pegasus wings and make it happen.

AV: Since I’ve stopped doing that, I’ve become a parent. I left a career trajectory that was killing my body-mind-spirit. And with time, I’ve seen that I have value outside of the external giving that I was conditioned to do, which I know is a product of machista culture. I can now put all the energy I spent on trying to be “someone” toward actually being myself. 

I still have to plan ahead. If I’m going to go to the grocery store, say, do I have the right shoes on? Are my crutch tips in good condition? Do I have energy to do this right now? And if the answer is no to any of those questions, I can just stay home. I cannot tell you how liberating that is.

*This conversation has been edited and paraphrased for clarity and brevity.

Alisha Vasquez is fifth generation Tucsonense whose Chicana-krip-queerish bodymind exists intersectionally. Alisha credits street kids, punk rock, community activists, her mama, and those without official titles as her greatest teachers. She is the Social Media Administrator for the Southwest Folklife Alliance and is also caring for her two-year-old daughter, Athena.  

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. 

Cover photo: Members of American Disabled for Attendant Programs Today (ADAPT) block a Greyhound Bus to protest the fact buses were not equipped with lifts. 1989. Photo by Tom Olin. Courtesy of ADAPT Online History Museum.

Cover photo image description: (Right to left) Mark McTimus, Barbara Toomer, Mike Auberger, Stephanie Thomas, Frank Lozano and Frazier block the front of a Greyhound bus. Mark is on a tiny yellow scooter holding a yellow sign that says “Lifts Not Lies.” Barb is in a manual chair and short sleeved shirt holding a camera; her red sign – taped across her legs — reads “Go Greyhound And You’ll Leave Us Behind! Mike has one long braid and a beard and mustache, his hands are on his hips and like all the others he is chanting; his left leg is elevated in front of him on a padded footrest with no shoe, only a sock (this is to protect an injury he got in the LA County Jail). Stephanie is facing slightly away from the camera with several buttons and stickers on her sports wheelchair and overalls. She is wearing blue-rimmed mirror sunglasses and her sign, also taped over her legs, reads “ALL Aboard.” To her left Frank stands wearing his backpack and an ADAPT headband. He and Frazier, his white lab dog guide who sits in front of him, have the same noble expression on their faces. Frank’s sign which he holds in one hand, reads “We Will Ride.”