Disability Pride Month

Notes on the ADA and bodies

“Whether someone is useful only matters if you value people by their use.” ― Corinne Duyvis

Dear Compassionate Readers,

Thirty-five years ago, the Americans with Disabilities Act was signed, which prohibits discrimination based on disability. Two years before that, I was born with disabilities. The hearsay stories about the first days of my life from my family sometimes contradict each other, so it’s difficult to say with precision, but sometime before I left the hospital, I received my first diagnosis: Complete Congenital Bilaterial Hip Dysplasia. Which is means, when I was born (congenital) both of my hips (bilateral) were fully dislocated (complete) and malformed (dysplasia). My case was especially severe.

I’ve come of age in a rapidly changing world, especially when it comes to the social dynamics of disability. I was born into a country with no legal protections against discrimination for me, that did not guarantee the same right to life, liberty, and the pursuit of happiness as my able-bodied counterparts. But because of the hard, endless work of disabled activists since the 1970s, and in spite of a Republican majority who did not want to vote for this bill, I was only two when my rights were set into law. If you’re curious, at two years old, I was not yet walking when the ADA was signed. Since then, and especially with the rise of the internet which is sometimes a far more accessible place than the real world, I’ve watched people talk about and treat disability differently.

After six weeks of traction, two major surgeries, tons of hospitalizations and bracing later, I did eventually learn how to walk, although I have on occasion relied on various mobility aids for my entire life. I’ve used a ton of them. I’ve used crutches, wheelchairs, walkers, canes, braces. I’ve also benefited from a lot of therapies, both in and out of school, which my parents had to continuously fight and advocate for. Even so, my brother who has a learning disability, who my parents also fought and advocated hard for, rarely received the accommodations he needed in school. My disabilities are more visible than his, and that has allowed me access that he wasn’t allowed.

I was a special education student at a public school in Upstate New York through the 8^th grade. Through school, I received physical therapy, speech therapy, and occupational therapy. I also had accommodations when it came to tests and seating and computer access. Beyond my hip dysplasia, I also have difficulties with my fine and gross motor skills, wicked farsightedness with astigmatism, and a fragile skeleton that suffers hairlines fractures if I look at it wrong. I also suspect that there is something yet to be diagnosed that explains my hypermobility and long fingers. In other words, I needed a lot of accommodations to make it through school, more than most of my peers.

However, I found some success in academics. I went on from my public school experience to a small private liberal arts school in Swannanoa, North Carolina (shout out to Warren Wilson College, forever), and then eventually to a huge state university for my MFA in Texas. Because of the accommodations and resources I was given at every level of my education, I’ve been able to carve out a pretty sweet life for myself.

Despite everything I’ve told you so far, despite my lifelong disabled body, despite my 504 classification, I didn’t start using the word disabled to describe myself until I was 30. For a long time, it felt like a dirty word. At other times, I’ve wondered if I’m disabled enough to use the label. I don’t have the same struggles as my friend who has complications from Spina Bifida, or my friend who acquired her disability after Meningitis took her legs. I don’t have the same struggles that my fellow special educations classmates who have intellectual disabilities do, or my friend with a TBI. I don’t even have the same struggles that my brother does. But isn’t that how life works? The disability community, like all communities, is not a monolith, it’s rich and vibrant and varied. And our experiences do overlap. Eventually, despite a lot of initial discomfort, I found the label freeing. I found it so freeing that I accidentally started writing a memoir about my disabled body. Five or so years and one and a half drafts later, it’s the hardest project I’ve ever taken on.

Part of coming to terms with disability for me has meant acknowledging that disability is morally neutral. It’s easier for me to do with others. One of the places that I first started really tapping into the disability community was on TikTok during the early days of the pandemic. Seeing other disabled people was so good for my brain. I never judged the creators for their disabilities. Right? But here I was full of self-hate for having a body with needs. I worried it made me inherently less good and worthy as a person.

It was also on TikTok that I saw for the first time footage from the 1990 Capitol Crawl where sixty disabled activists put down their assistive devices and crawled up all seventy-eight steps of the Capitol. Even today, I don’t need to watch the video to evoke the images. I weep with pride. I’m crying at my computer today, friends. If you don’t know about this historic event, don’t feel bad. It’s not taught. PBS calls it “The Iconic Civil Rights Protest You Don’t Know”. We still have trouble centering disabled people.

We’ve made great strides in making the world more accessible, and we have work to do. And we have an administration that is actively dismantling the progress we’ve fought so hard for. It breaks my heart that my homies in the next generations will have less access, not more. We deserve better. That’s one of the reasons I keep showing up to this page.

I decided to call this project Poetry is Politics with a real nod towards Carol Hanish’s essay “The Personal is Political”. Because I have this body, my very existence is political. Just as my disabilities cannot be separated from my person, politics cannot either. And good luck trying to rip poetry from my cold, dead hands, you filthy billionaires and kings. None of my friends like you either.

I’m proud I was a special education student. I’m proud of my disabled body. I am not less for it. I’m as necessary to this tapestry as my able-bodied cohorts. We all are. Don’t let them tell you differently.

Happy Disability Pride Month!

Here are some photographs of me using accessibility tools throughout the years.

Baby Elizabeth slaying the full body brace look.

Toddler Elizabeth, still rocking the brace. Peep the trike.

Child Elizabeth is wearing American Girl Doll apparel and, of course, her daily-wear coke bottle glasses.

Teen Elizabeth did not allow for photographs. But twenty-year-old Elizabeth is rocking the grandma core look at Langerado Music Festival after hip surgery number 3.

This look is called I broke my ankle hiking while on a cross-country road trip.

Thirty-something Elizabeth hikes with her Ma featuring a cane from the junk store down the road.

Here Grown-Ass Elizabeth models some anti-arthritis gloves for crocheting.

Physical Therapy Elizabeth sports a Butter sweatshirt and purple ankle brace.

Tell your favorite disabled people that you love them (maybe even more than anybody else). Consider becoming a paid subscriber today or sharing this post with your friends.

The world is hard, but we’re resilient. I know. I watched all those people crawl up those stairs. Really, take the time to watch this one. Even if you’ve seen it before. It’s worth your time.

I love you,

EBG