Summer 2019 - Vol. 16, Issue 3

If you were a teen girl in the 90’s you idolized, worshipped, and imitated Cher from Clueless or Buffy the Vampire Slayer. Or in my case, both. Like your favorite choose-your-own-adventure books as a kid, you had a choice. But only my Buffy fixation held over time. Something about her boots: knee-high, high-heeled, bitchin soldiers, accessorized with chunky sunglasses, a short, cherry-studded dress and Mr. Pointy—basic tools of any slayer. But also her imperfections, her successes glittered with mistakes. I went out and bought a pair of those boots, so soft, mahogany leather, and when worn with skirts my bone disorder seemed to disappear. When I zipped up my right foot, I felt sexy. Though pushing those teeth together and closing the zipper over the benign, baseball-sized tumor on my left ankle hurt, I felt covered, even if it cut off my circulation and turned my foot numb. The impulse to be just a normal girl carried me, carried Buffy. Normal as a watchword in a world where we think we know what normal is.

 

Sometimes I think having a disability is like being a closet superhero. You seem a freak, knowing what no one else knows about the body, about the world, about perception. When you’re young, your body feels invincible, and even when hurt, you know you’ll heal and be as good as new. When you’re young, you think pain ends. When I had three surgeries as a teenager to remove various bone tumors, I knew I just had to grit my teeth and power through—that on the other side of the pain, everything would be new and shiny. But the truth is, the pain doesn’t end, just transforms, reshapes itself. We still hurt. And that pain shapes us early on. This knowledge sets us apart. 

 

But the body adapts to pain until it feels normal, and to us it is. You see, my body and I understand compromise; I don’t fear physical pain as much as I fear exposure, perception. It’s taken almost two decades to convince myself to put away those boots, wear flip flops and shorts in scorching Texas summers. To stand still, not lower my head or kick my foot back in a half-assed attempt to hide. Sitting bare-ankled and writing one day in a coffee shop, a man in a wheelchair rolls up to me and says, “Hey, I noticed you’re kind of bumpy on the bottom. What did you do to yourself?” Surprised, I answer promptly, “Genetics. It’s a hereditary bone disorder.” He replies, “Cool, congratulations,” and rolls away. 

 

At times like these I wonder what would Buffy do? She once said, seize the moment because tomorrow you might be dead. But mostly I think this is code for avoidance. Have irrational, mind-consuming sex with a bad-boy reformed vampire. Or drinking and dancing at the Bronze. She always beats the external bad-guy threat, understands ass-kicking and hunting through cemeteries, but when she is her own worst enemy, the emotional shit defies her again and again. I want to avoid the emotional shit too, only I can’t kick-ass or lose myself in all-night staking marathons, I can’t rely on a body that daily struggles to support itself, aging into arthritis quicker than most. And none of us can really count on tomorrow since time is always waiting to kill us.  

 

What are we left with? A quest, the ability to choose: our identities, our governing principles, our communities. So, if this is a Buffy-style choose-your-own-adventure moment, what path would you choose? 

 

 

Option A:
You think, cool, he gets it. 

 

This is the moment at Buffy’s senior prom, when she’s standing in her pale rose dress receiving the golden umbrella, her classmates’ acknowledgement of her hero status. We realize Sunnydale is not as blindly ignorant as it seems, that an entire town can choose to ignore reality. But why? Cause it’s scary? Hopeless? Because ignorance is easy? Because who wants to be reminded of imperfection? Of mortality?

 

Community versus autonomy—never has anyone congratulated you on your genetically unusual bones. It’s been you against the world. But is this stranger’s acknowledgement based on the assumption that you somehow survived? Are you a victim, did something bad happen to you? Or is the congratulations for simply being who you are? Or are you over-thinking it? Does he simply understand the disservice of silence and isolation? 

 

 

Option B:

You think, why strip me of my personal illusions? 

 

This is the moment when Angelus asks Buffy what’s left, when she’s momentarily without weapons, friends, and hope. He means to break her down. They’ve fought--punches and roundhouses, swordplay and split skin. She’s on the ground in a crumbling mausoleum, bleeding, when he moves to stab her with his sword. And Buffy answers: Me. And stops the blades mere breaths from her face. 

 

Independence versus interdependence—your vocal stranger didn’t shy away from the differently-abled body; instead, he learned to harness it, to share it. Create a connection with a complete stranger. But was this congratulations sarcastic? Self-deprecating? Can you trust him to genuinely see beyond your bones? To be community? Passing strangers’ silent stares of curiosity and disgust feel worse, mostly. As if it’s the most natural thing to catalog what makes us different. And deem each other lacking.   

 

 

Option C: 

You think, why should I explain myself? 

 

This is the moment Buffy confesses that she has been yanked out of heaven, that her every action has been colored with a knowledge of peace and perfection she can never achieve on earth. Only the demon of song overrides her silence, her impulse to protect the others from the truth, when the truth is she would rather dance until she burned than live. What can be done when the truth is so personal no one else can understand?   

 

Self-sufficiency versus self-determination—the same thought rolls, consciously or not, through your head when walking, ankle exposed, through life. You define yourself, decide your actions and reactions. It’s not about pity or blame. You want to be seen as you, not your bones, not as a plastic surgeon’s dream or a mistake. But who can you trust when the truth is so personal you think no one else can understand? 

 

 

Option Reality:

You choose all the above. 

 

So what if you learned long ago to not walk straight, to rethink the habit of “propelling yourself into space.” So what if you learned to have “a different starting point” without a balanced, symmetrical center. Yes, the body adapts, you manage your disability. You define what it means to you. But is it enough? You’re waiting for the world to adapt too, and you’re hopeful. You will write and someone else, a few someone elses and then a few more, will understand. You will see functional separateness can’t compete with personal connectedness. Meanwhile, you are sharpening the knives, tuning the guitar, saving the good liquor.  

 

 

Before sacrificing herself to save the world, Buffy says the hardest thing in this world is to live in it. I still have those slayer-inspired boots, slivers of leather, a professed hide me and look here. A place to winter, or perhaps summer, a tool to hide my body’s legacy, “this meat life” that influences everything. Buffy, the Chosen One, tries to create a life beyond her legacy, but can’t. We keep asking ourselves: if not the slayer, who would she be? Who would I be without my mother’s genes? Who would we be without that one thing that makes us unique? Not us is the easy answer, but would that be confirmation of who we could be or betrayal of who we are? It’s a choose-our-own-adventure moment. What path will we choose?

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NOTE:

As I was writing this essay, I was reading the anthology Beauty is a Verb: the new poetry of disability edited by Jennifer Bartlett, Sheila Black, and Michael Northern (Cincos Puntos Press, 2011). The writers in this anthology were so amazing, so inspirational, especially to a young woman trying to write about her own experiences with disability, that I wanted to reference the greats, so to speak. Paul K. Longmore, historian and disability activist, wrote that the disability community’s search to self-govern and define itself was a quest, and only those with a disability should be able to define it. The following quotes were taken from various anthology contributors: the phrase “propelling yourself into space” is from Robert Fagan’s essay “Less;” the phrase “a different starting point” is from Jim Ferris’s essay “Keeping the Knives Sharp;” and the phrase “this meat life” is from Danielle Pafunda’s essay “Meat Life.” I am truly grateful to all these writers who are paving the way.