How I Transitioned With Complex Disability
2:02 PM EDT on September 27, 2023
Histories Of Transition is a series spotlighting the experiences of trans people as they've worked to exist within structures that don't want them to.
2006: The first doctor I confide in about my gender is a neurosurgeon I’ve been in the care of for nearly all of my teen years and, while I’d certainly hate to spoil any surprises a mere one sentence into all of this, I would not recommend a pediatric neurosurgeon as the first point of contact for anyone out there looking to get support with gender dysphoria (in the year 2023, let alone 2006). But we work with what we’ve got.
I am terribly meek and hardly specific when I say the only words I would say on the matter: “I think I’m maybe … or I might be transgender.”
In 2006, I certainly know there’s surgery and hormone treatment involved in medically transitioning. But I know little about it. Surely not enough to definitively know if it was for me. In truth, I only wanted to tell someone aloud.
He, of course, is quick to dismiss the idea of medical transition or trans care of any sort, lumping it all together before I’ve even thought to deeply consider what specifically it was that I even wanted out of a potential transition (or confiding in him in the first place).
“Well, I would hope it’s a phase,” he tells me. He goes on to explain that we don’t know the full effects of hormone therapies, and that someone with the surgeries I’ve had wouldn’t be a viable candidate for any elective procedures. He aggressively emphasizes the surgical procedures I’ve needed for my genitourinary system—a polite way of referring to my junk—already, in a way that fully shuts me down.
I’d be foolish to needlessly risk a body so broken. “No reasonable healthcare provider would seriously consider it in someone with your medical history.” An undeniably young (and now deeply uncomfortable) 19-year-old, I figure I’ve always trusted him and take his warnings as unfortunate but absolute truth. I don’t push the subject aloud any further and won’t for a long time. Transition isn’t for people like me.
Boring, but relevant: I was born with a complex form of Spina Bifida called Myelomeningocele, a neural tube defect that affects the central nervous system (and often various mobility and organ functions as result). For me, this has led to over 60 surgical procedures and collective years spent in hospitals dealing with various systemic health complications. An overall generally unfun amount of life baggage.
While life with a disability isn’t inherently tragic, I can’t pretend it’s not really fucking hard. We do live in The World™ and mainstream society often fails to recognize or treat disabled people as entire people with thoughts and hopes and dreams and whatever else. In this, of course, my experiences as a disabled person intersect and impact every other aspect of my identity whether or not it even should. Anyway, it’s quite exhausting.
This is where I start: physically disabled, historically (and egregiously) medicalized, maybe not a person, and silently aware that I am trans as hell in a body that has always felt like absolute shit to live in. And now I have my answer: Transition isn’t going to happen in this body. I tell myself it’s fine. The thought of needing additional medical care makes me want to throw up anyway.
Years pass. I get older, and rather than settling into life in my dumb body as I’d hoped I would, I get a lot more restless and a little less okay with feeling like shit. I come out as a lesbian but cringe a bit at myself whenever I do as it just doesn’t feel quite accurate. My doctors also cringe. Lesbianism is also apparently against the rules of disability. But now I am cool. I am mature. I am 25 years old and I have sexuality. I begin to wonder if maybe it would be worthwhile to talk about my gender vibes to more than that one single white man who’d shot me down. I seek out a therapist with “LGBTQ” experience, find one who takes my insurance, and schedule an intake.
2012: I talk to this therapist about my gender but waver on how to articulate it. I feel like I know I’m trans, and that’s not going away. But I still struggle with the belief that actually being trans is not an option. Ultimately, I’m not sure of who or what I feel I’m supposed to be; I only know this doesn’t seem to be it. When I explain this frustration, and say that I’d to resolve this confusion, she tells me that people who really experience transgenderism feel more clear in their wants and needs, and it’s likely a feeling brought on by my depression and anxiety—understandable afflictions given my disability. She doesn’t think I’m transgender. Rather, she says, “it is trauma.” I am “dissatisfied with my body” and “looking for a feeling of control.” I would simply need to learn better coping skills for living in and accepting my disabled body.
This, of course, is not a thing. The concept that a deep depression or dysregulated anxiety would somehow be causing gender dysphoria, rather than simply living alongside or stemming from it, is quite the stretch. In a 2015 report, the American Psychological Association wrote on the dangers of ill-informed provider practices like these. It isn’t uncommon for transgender people to experience depression, anxiety, or any number of psychological conditions related or unrelated to their gender identity, but mental health difficulties are not the root of gender dysphoria (and further, physical disability is not the cause of mental illness).
I dip on therapy. And myself. Again.
2015: I start putting myself out into the world more and begin making queer friends with intention. I listen to my friends discuss their transitions and feelings and slowly grow confident enough to share tiny pieces of myself with them. It’s very sweet and tender in a way that feels almost silly if I think about it for too long. I feel more seen than ever, but I still can’t help, in all my listening, feeling cheated out of the possibility to experience myself in full.
My chest feels heavier and heavier watching friends take their turns finding relief through top surgery, knowing I will never have access to it for myself. I grow more self conscious of my small stature, a distinct byproduct of my medical condition, and every unwanted comment aimed toward it. Seeing others access hormones and connect with themselves makes all my discomforts feel that much more prominent. My speech suddenly feels more high-pitched, my body glaringly underdeveloped. It grows harder and harder not to resent my disability. Worse, I start to resent my friends’ access and happiness. All are rather ugly side effects of simply wanting to feel happier myself.
Where I’d found acceptance and community, I also recognize my anger—and sadness—in my situation for the first time.
Through all of my questioning, I’d witnessed various eras of The Trans Experience through a once-strictly medical lens: the lingual shift from transexualism to transgenderism, the emphatic fixation on whether or not a trans-identified person had had the surgery, the development of medical guidelines, the redeterminations of medical guidelines, the ups and downs, back and forths. I’d grown so fixated on the things I couldn’t access that I’d not let myself move beyond questioning whether or not I was allowed to be trans. Who the fuck decides?
2021: I am 34 and my name is Gus, and while I am certain I am me without any medical aspect of transition, I finally accept that I want it and make an appointment, “just to see.”
A week before, I nervously cancel.
I cancel two more times.
2022: I am nearly 35 when I finally find myself in the waiting room of Hennepin County Medical Center’s Gender and Sexual Health clinic. It’s my first medical appointment since my last hospitalization a few years prior. Having grown more and more frustrated and anxious, I’ve generally fallen out of accessing medical care of any kind. I’m digging my blunt fingernails into my thighs, bobbing up and down from a foot that won’t stop shaking.
It takes three repeats of my name for it to register that it’s me the nurse is calling for. No one in a medical office has ever called me that. I spring up and walk into the most unfamiliar familiar space I’ve ever known.
“Are you comfortable stepping up onto the scale there for me?”
“I’m just going to get your blood pressure really quick.”
“Are you experiencing any pain today?”
“Is there anything specific you’d like to discuss with the doctor today?”
My doctor is suspiciously nice.
When I tell her I’d like to discuss going on testosterone therapy, she smiles and says she’s happy to discuss it with me, as long as we keep up with all areas of my care. I leave the office two hours later with referrals to a Spina Bifida clinic for adults to get updated testing and management of my condition, a gynecology appointment to get a baseline for the current state of my reproductive health, a few specialist visits, a return appointment to her office, and lab work.
I also leave with a script to begin testosterone therapy.
Hormone therapy has been a mixed bag, and we’ve gone up and down to get the dosage that’s best in my body. My voice has deepened, my energy levels have lifted some, and I have immense pride in my very own! Self grown! Shitty little rat mustache!
Specialists have denied surgeries thus far but remain open to the possibility of revisiting that consideration later (in fact, I got news while writing this draft that my doctor thinks things are going really well and approved a referral to speak with a surgeon about possible options for top surgery). Though it remains a sometimes frustrating and disappointing road, it is mine. And it is different. For the first time in a long time I’m not only in care, but in care as myself. And I’m hopeful.
A. Andrews is a thirty-something disabled queer/trans writer and illustrator. They spent the majority of their young life sketching in hospitals, and experienced their first heartbreak at age 8 during Game 6 of the '96 NBA championships. When they aren’t writing and drawing their guts out, they’re hanging with their dog, George, and drinking too many coffees. They will probably never tell you “what’s wrong with [them]” and you shouldn’t ask! They were named one of The Advocate's 2021 People of the Year, are a 2020 Tin House Summer Workshop scholar, and their debut graphic novel, A Quick and Easy Guide to Sex & Disability topped 2020 lists for the NYPL best books for teens, and YALSA's best books for teens, and is available anywhere books are sold. You can find more of their work at Washington Post, Esquire, the Nib, and other fun corners of the internet.