How radical acceptance of my disabled body made a mess (and clarity) of my gender acceptance
Content notes: gender and body dysphoria
I am writing from a coffee shop, my favorite one in the Twin Cities, sipping an iced vanilla latte. This is a thing I do every morning when I am out of the hospital and in the real world—a reward I offer myself for waking up every day and trying again. This can be a hard thing for me, trying.
Everything about the ritual soothes my anxious brain. The consistency of having a place to go. The familiarity in my barista, the cafe’s owner, remembering my name and pronouns along with my order. The way she will barely look up, but still offer a knowing nod as the door jingles closed behind me and I enter and join the line of other regulars. I am seen here. In my disabled body. My queer body. My trans body. In this one small place, and this one small interaction, I can exist as I am. Every part of me, given equal weight and a daily dose of caffeine.
Yet as I write, I am all-too aware of my body. The slight of my disabled body in an able-bodied world. The violation of my trans body in a cisnormative world—one which holds privilege and status over gender identities that don’t align with assigned birth sex. The forced gaps between these parts of myself. The compromises I make to feel safe. To feel acceptable.
I was born with a type of Spina Bifida, a five dollar word that makes me feel smug every time I say it: Myelomeningocele. Membrane non-intact. My spine, incomplete. Nerves tangled, compressed, and exposed. My brain’s tail, swallowed by a fatty tumor, its weight pulling it tight like an overstretched rubber band. My young family struggled with me. My health issues often became a scapegoat for the cracks in our foundations, which I found hard not to feel responsible for as a kid. Worse, I was grappling with secrets. Trauma, sexuality, gender. Everything about me felt wrong.
Spina Bifida is the most common disabling neural tube defect, but it remains rare overall. It is often dubbed a “snowflake” condition in disability communities, as everyone experiences it differently. In my case, I’ve navigated life with various co-existing health conditions, most—but not all—related to my Spina Bifida diagnosis: tethered cord syndrome, hydrocephalus, kidney and bladder issues, incomplete paraplegia, abdominal malrotation, and various bone and joint problems. All in all, I’ve had over 60 major surgeries, and spent collective years in hospital beds across multiple states. It’s rare for me to face a year without some sort of health complication landing me in a hospital room binging Law and Order: SVU episodes on a twelve inch screen.
Accepting my body and my lack of control over it was one of the first things I ever had to learn in my life. A necessity for living and thriving in a disabled body. A lesson I’m still learning all the time. I would love to say with any honesty that I’ve always accepted my disabled self. That I’ve always known my inherent worth. But it has taken me decades of life, and distance from relatives, to peel back all the layers of my existence and find myself within it all. To appreciate my unreliable body for what it is, rather than mourn it for what it isn’t. I don’t grieve for my disabled body, but I do grieve for the time I spent hating it.
Of course, the truth that I had for so long pushed down, was that my body issues expanded far beyond disability. I was also born a woman—a girl. Assigned as such, anyway. Another part of me that just felt… wrong.
Aside from my petite frame—a byproduct of my medical condition—there is hardly anything stereotypically feminine or ladylike about me from a general glance. I have a short fade haircut, am covered in bold-lined traditional tattoos from head to toe, and am rarely seen without a natural scowl parked between my heavy brows. I’ve never worn makeup and am careful to choose clothes that don’t accentuate my hips. Or my chest. Or my waist. A need I’ve had all of my life, but only in my most recent years allowed myself to examine for any real meaning.
The word dysphoria comes from the Greek, Dysphoros meaning difficult; and is defined as a profound state of unease and dissatisfaction. Generally speaking, dysphoria as it’s commonly used often relates specifically to gender dysphoria, a state of stress and discomfort in one’s assigned gender, but there are all different types of body dysphoria. Arguably, body dysphoria often comes with the territory of having a physical disability as well. In my case, at least, this is true. I have always been hyper-aware of my body. Tuned-in to every part of it that looked or felt different than I presumed other bodies to look or feel.
As for my queer identity, there have been aspects to it that have felt fairly easy. Unavoidable. Even…obvious. While finding confidence in my sexuality was certainly complicated by my disability, I’d ultimately found no need to challenge or hide it. My gender proved more complicated to pin down. I struggled with my difficulties in defining it. I struggled even harder with its intrinsic ties to my body. I found it difficult to even know for certain, the source of that discomfort. I knew I wasn’t the girl everyone thought me to be, but I couldn’t say for sure what I was.
It wasn’t for lack of language. I, of course, knew what it was to be transgender. I knew, too, that gender transition was possible. But for me? Everything felt different in the context of me and my body. The prospect of feeling aligned with my body in any way, was one I’d not allowed myself to bother imagining. I suppose for little more than fear of disappointment. My body had never been what I wanted it to be, but I’d worked so hard to accept it. To find joy, grace, and even love for it.
For a long time, I found it easiest to push down my discomfort, as though it was merely another part of working to accept my body as my body. Much like my disability, there felt little control to be had. I told myself the lie that I’d worked so hard to dismantle: that my body doesn’t matter. That it doesn’t deserve to feel good. That everything about me was wrong, why should my gender be any different?
But now I am thirty-four. Years beyond what was once a suggested expiration date, a thing that lives present in my body and mind every single day. Still anxious, but less complacent. Less afraid to see possibility in myself. Less concerned with how the world feels about me. Less willing to allow myself to be as small as an able-bodied world would ask me to be. More authentic. More hopeful.
And now I am seeing that accepting disability has been about so much more than: being okay with perceived shortcomings. Contrarily, I am seeing that my body is not a shortcoming, not a mistake or an accident, but a design of my own. My body is just… a part of me and who I am. Accepting disability has meant accepting and truly believing that I deserve access to the life that I want for myself. And in that, accepting myself as a disabled person meant not allowing myself to stifle other parts of me that feel hard to understand. Rather, my disabled body could help me to accept all these other parts of myself that I wouldn’t let be—all these parts that deserved joy and love and acceptance, too.
And even on the precipice of all of this work—all of this hopefulness—I am terrified.
I am terrified that I will change.
I am terrified that I won’t.
I am afraid that my body will become something I don’t recognize. That the comfort of easing some of this dysphoria I’ve lived with all my life, will spark a new sort of panic in my body. That feeling better, may feel so disorientingly unfamiliar, that it will also somehow feel worse. To commit myself to an idea of comfort in a body I have for so long worked to accept discomfort in. To choose myself, when it so often feels like no one else would.
It’s always a fine line as a trans person to write about these fears without being mistaken. So, I will be as clear as humanly possible: transition saves lives. We know this. We see this every day. The anxiety in committing to transition is no indicator that transition isn’t crucial. Rather, it is a signal of its importance. The magnitude of its shift in one’s life. Even good change can be all-consuming.
It took me (thirty-three and a half years and) nine months to make an appointment at my hospital system’s Gender and Sexuality Clinic. (Thirty-three and a half years and) Nine months of near misses. (Thirty-three and a half years and) Nine months of dialing numbers and hanging up before completing. Once, I caught a scheduler on the end of the line and shakily voiced an apology: Sorry, wrong number!
But in one month, I will be sitting in a clinic. Undoubtedly shaky-voiced and handed. Nervous but eager. Ready.
In learning to embrace myself as both a disabled person and a trans person, I am always learning that there are intersections of similitude between both identities. The two are not at odds with one another inside of me, but co-existing within me, each informing the other. It is true that both are seen subjectively by the outside world; that both are deemed wrong or imperfect in greater society; that both serve as spectacles for the world’s consumption and critique.
And it is true that the ugly in the world doesn’t dictate truth. It only keeps us from being ourselves.
But as scared of unknowns as I am, I cannot be kept anymore. I know myself. I know that I have value. That I am all of these things: disabled, queer, transgender. And if I have value, and I am all of these things, then all of these things have value. I am learning every day that I cannot fully embrace one of my identities without embracing all of them. I’m learning every day that to accept my body is not to give up on, or give in to my body, but to value it for what it is and what it can be.
So I will take on the terrifying, and I won’t run.
I’ve never been much of a runner anyway.
I’m A. Andrews, a thirty-something disabled queer non-fiction writer and cartoonist. My debut graphic novel A Quick and Easy Guide to Sex & Disability (Oni/Limerence Press) has topped 2020 lists for the NYPL best books for teens, and YALSA’s best books for teens. I was named one of The Advocate’s 2021 People of the Year and am a 2020 Tin House Summer Workshop Scholar, and have created comics and content for Autostraddle, TV Guide, Glamour, Women’s Health, Oh Joy Sex Toy, Visual AIDS, The Minnesota Department of Health, Carnegie Mellon University, and am currently working with First Second on an unannounced graphic novel about the Stonewall Riots slotted for 2021 completion. Some sampling/viewing of my work can be found here.
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