Disclosure
There was a period of time as a young kid learning how to navigate this odd thing we call a “self,” where I would burstingly introduce myself: “HI MY NAME IS HALEY AND I HAVE A DISEASE.”
It turned out to be a pretty short period of time. I quickly discovered that this alarmed/confused/frightened other children (although I couldn't figure out why), but I felt like it was my obligation to tell them about my medical complexities upfront so that they could decide whether to be friends with me. On the occasion that I didn't slip it in right away, I'd feel the sinking weight of an ominous secret, a lurking monster waiting to emerge and destroy. I'd watch my new friend talk, barely hearing their words over my internal monologue's dramatic narration: “IF THEY ONLY KNEW...” (my brain-world as a child was usually a tragicomedy melodrama in which I was the clever and beautiful protagonist). I'm honestly not sure what motivated my urgent disclosure – was I concerned for my physical safety, and in informing potential friends about my delicate bones, asking them to be gentle with me? Was I trying to impress them with my nonconformity? Was I worried they'd be disappointed or confused by me; did I have some super five-year-old intuition that fractures and breaks strain the people around us more than anyone would like to admit? Did I feel guilty? Ashamed?
Probably some combination of all these and more, but as I got older, the latter tangle of thoughts grew stronger in its grip. In middle school and high school I felt such intense shame toward my body and disability that I practiced normalcy like it was my rent for taking up space in the world. I scoured magazines for my own body type (never finding it of course) and endlessly tried to hide “my flaws” (which were also endless), policed my sexuality with militance, once refused to get out of the car for school because I felt too ugly, disengaged from any medical conversation, and did all I could to clear my memory and identity of all disability-related content. I didn't realize until years later, when they started to reemerge in hesitant blurs, that I'd blotted out major pieces of my life.
It wasn't until college, where I gained access to a new set of words and discourses, that I could talk about those blocked pieces in a way that didn't feel terrible. Articulating them still hurt, a lot, and still sometimes does. But unlike the language of medical discourse, which objectifies me and alienates me from my own body and experiences, the discourses of feminism and disability theory make me feel powerful. It's painful to think about the trajectory I was on and the way I related to myself before college. It's also painful to realize that I may not have found these discourses (or at least, not when I did) had it not been for my access to higher education, and it's absurd and painful to know I'm in such a privileged minority in that way. I won't presume that disability theory is the cure-all answer to identity crises (by any means!), but it's absolutely revolutionized the way I feel about myself and that's got to be worth something to somebody else out there. Working to make that discourse more common and more accessible to more people motivates me in so many ways!
While I've never gone back to my I'M-HALEY-I-HAVE-A-DISEASE introduction technique, I do see my disability as a prominent aspect of who I am and how I experience the world. I'm learning, slowly and imperfectly, to be fearless and unashamed in expressing that upfront; these days, I acknowledge and narrate it more often and more fiercely. That narrative isn't the clear, resolved story that I thought I'd one day tell and it's not the story that people want or expect to hear. It's messy and forever unfurling, full of questions and loose ends. These days, (most of the time), it's not a story I tell out of guilt or obligation or urgency. It's a story I tell out of interest, joy, complexity, empathy, uncertainty, chaos and, most startlingly, pride.
