By Carrie Griffin Basas

Editor’s Note: We welcome back white-ally guest blogger Carrie Basas. This week Carrie shares how disabilities isn’t a static state of being. We need to evolve in our awareness and thinking about disabilities, disabilities inclusion/access, and disabilities equity. She drops a new term on us, woke crip, read more below.

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Larsen’s Syndrome beget hip dysplasia which beget unsuccessful attempts to pin my hips which beget traction of my infant body which beget hip replacements during law school which beget fragility.

Thirteen days ago, I became more disabled. Someone recently asked me the story of it, as if knowing how it happened might provide some insights into preventing its trajectory. “I fell HARD. I tripped over this weird sandstone ledge in my foyer. My toe got caught. I went over on my left side. Really nothing dramatic.” I joked about how lackluster my story was, but landing on a 16-year-old hip replacement that is constructed from wire, titanium, plastic, and a cadaver bone is complicated.

I was in excruciating pain. I got up from the floor that night only to go to the ER the next morning and again two days later, to spend a day in the hospital advocating for my admission after an outside expert in my condition (who only treats children) said it wasn’t a choice to remain at home—that I could crack further and also that I was at risk for blood clots. The hospital couldn’t decide if I had a fracture, if I should weight bear, if I really was in pain. When I said that I didn’t know how to get around the bathroom safely, that my pain was a 7 or an 8 on that beloved and meaningless pain scale, that I couldn’t walk the way I had with a cane—that I really couldn’t walk at all, they asked me what I wanted: A rehab facility? (Synonym: nursing home.) Admission to the hospital? For what? Didn’t I have a wheelchair at home? Didn’t I live in an accessible house? Did I work? Full-time? Really?

Becoming more disabled isn’t something I know how to do. There is no wheelchair-accessible house or trauma coping kit issued at birth or injury. My body doesn’t hurt or matter less because I started disabled.

I have an incredible community of beloved “crip” (reclaiming cripple) friends. They showed me via LEGO models how to transfer safely from my sofa to a wheelchair without getting a rim lodged in my posterior. They organized a meal train. They distracted my restless child who is about to have surgery of her own. Wonderful members of Fakequity did, too. People came out and I love them for it.

Ironically, all of those friends answered a question that had come up in a disability training that I had just done the day before my fall with public health officials: “But I’m not getting it—why wouldn’t you try to be more normal rather than accept disability? What’s the benefit?” I stammered some answer then about community and the impossibility of me being normal like the person asking the question—and how a lifetime of being told that the holy land was where I could walk unencumbered had just made me feel inadequate. But I’m much better at saying these things than living with these things.

I tried to stay on top of work. It distracted me from feeling diminished self-sufficiency. I reached out to the organizer of a legal conference where I was set to present. I reiterated that I’d be there, except that I needed to know about the accessibility. His answer involved coming in a secondary entrance (synonym: service entrance), calling catering to allow me to use their elevator, waiting for a temporary ramp to be installed, and then sitting in front of an audience as “the expert” when I was expected to stand. Basically, show up and feel like you’ve been dehumanized and infantilized and then give them a great PowerPoint, ok? This was an audience who had never anticipated or intended that people like me would be there.

I believe that what came out next to my family, as I sat in my friend’s borrowed granny scooter, was an expletive that I’d be embarrassed-proud for my daughter to say at school but teachers might not enjoy. And after that:

“This is ridiculous. I’m not presenting in spaces where no one has looked for a baseline of accessibility. I’m tired of conforming to other people’s comfort.”

My husband, not disabled but POC, joked that I was suddenly “crip woke” in my impending boycott of offers to speak in inaccessible spaces.

In the past, I would have dealt with it. For example, when I showed up this spring to present about IEPs at a hospital, I faced a set of stairs to the presenter’s area. I grumbled loudly but I didn’t walk out. That didn’t seem professional. I’ve always felt beholden to making others feel comfortable about my disability—to diffuse their awkwardness with humor or acceptance. I appreciate people who are trying to get disability. Other times, though, I am reminded when I’m the only disabled person in a space, that my presence is a surprise and that I occupy a tenuous position. Be nice or reinforce that my people are unrealistic and angry.

My friend, who had LEGO-educated me, heard my rant about access and said: “That’s a good starting point. Maybe we need you to lose some vision and some hearing.” Yes, maybe I do.

My conference host was embarrassed and admitted, no one had come with a disability before and he never thought about it even though the topic was disability. Could I just tell him if I was coming? He assumed that I was bringing someone to be with me all day to help me. I have a fragile hip but not a round-the-clock work assistant. I can take care of myself if I can come with my new-fangled equipment. No, I don’t have someone coming with me. Some people with disabilities do have attendants to support their health needs. That does not diminish them. Just because I was more disabled than the last time he met me didn’t mean that I was issued a helper or that I needed one. I said all of this in a much nicer way which amounted to a terse laying out of my concerns and a polite “no thanks,” along with suggestions for non-disabled speakers.

Even my description above shows how difficult it is to accept—and shamefully so in my “woke crip” state—that I have internalized and accepted so much rampant ableism. I conformed my body and needs to what was presented to me because I often had the privilege of making it work, of taking on that burden myself. I made walking with the least amount of equipment my goal. I can say that’s a way of being functional in a world designed without people like me in mind. And that’s true.

But I can also say it makes me complicit in enforcing what desired normalcy looks like—and not just with disability. To struggle with accepting the here and now is to also advance attitudes that say white is better, male is better, English-speaking is better, gender binary is better . . . because aren’t those identities “easier,” too? Don’t they conform to the circumstances—both access and attitude—that we find ourselves in today? And don’t they also tell those of us who are not those versions of “normal and acceptable” that we don’t matter as much? And we’ll be rewarded—just not right now—when we become those things? The destruction of ourselves isn’t worth it.

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Carrie Basas works in education advocacy and formerly in civil rights law, specializing in disabilities rights. Formerly she was a law professor impressing upon law students the importance of understanding race and its impact on people. Carrie has a MEd in Education Policy, Organizations and Leadership from the University of Washington. She earned a Juris Doctorate from Harvard Law School and an Honors B.A. in Psychology with a minor in Sociology/Anthropology from Swarthmore College. However, her biggest claim to fame is some of her fashion weekend wear while hanging with her family and dog and bunnies.

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