“All the freaky people make the beauty of the world.”
— Michael Franti
Fourteen years ago, I made a trip to Hot Topic—that quintessential 90s chain store for all things goth—in search of some fishnet stockings for a friend. It was my first visit to the store since I was back in a wheelchair for my third and final limb-lengthening procedure and the narrow aisles prevented me from venturing beyond the entrance. My first time in a wheelchair, from ages 11 to 12, had been a completely humbling experience as I was forced to see how very inaccessible the world is for the non-ambulatory. This time around I was battling the hot-cheeked self-consciousness that adolescence attaches to any signs of dependency.
As I tried to look casual while flipping through black gloves, black stockings, and black dog collars, a guy approached me sporting crimson hair, eyebrow rings, an employee badge and a smile. “This is store is easily adjustable,” he grinned, and with that he began shoving aside the display cases and clothes racks—which were, like me, on wheels—clearing a path for me right through to the back and taking little notice of the other shoppers, some of whom took one to the shoulder. It was one of those crushes that disappear as quickly as they develop but leave a lasting memory: my knight in shining jewelry.
Thanks to experiences like this, I have a special place in my heart for the acceptance of physical differences that can often be found in the subcultures of punks, hippies, and goths. From the imagining of monsters to the examination of anything taboo, counter-culture is often unfazed by physical qualities that fall outside of mainstream beauty standards. The first kid in my high school who chose not to stare at the external fixators on my arms but instead held the door for me had green and purple hair. About a month after my trip to Hot Topic, I showed a death-metal-loving friend my right fixator (shown above) for the first time, with the six titanium pins protruding from open wounds in my thigh. He grinned, “That is the ultimate piercing, man!” He hardly could have come up with a more pleasing reaction. That my wounds were cool instead of “icky” or “pitiful” was a refreshing attitude found almost exclusively outside mainstream culture. This attitude more readily understands my belief that my scars are merit badges I earned, not deformities to erase.
However, this tendency toward decency over discomfort is just one side of the alternative coin. Every subculture has its strengths and its weaknesses, and for all the freaky heroes I’ve encountered, I’ve also met plenty whose celebration of difference devolves into a sick fascination with the grotesque. “Weird for the sake of weird” is progressive when it asserts that weird is inescapable, that it is in fact as much a part of the natural order as any of our conventions, and when it serves as therapy for the marginalized. But it is problematic when it involves self-proclaimed artists using others’ reality as their own personal toys.
In a previous post, I referred to a friend of friend including me in an Internet discussion about limb-lengthening. His comments were in reaction to a photo of a leg wearing an Ilizarov fixator that had been posted on a Tumblr page focused on the “wonders of the world.” There are countless sites like it, where photos of conjoined twins, heterochromatic eyes, intersexual bodies, and medical procedures are posted alongside images of animals, vampires, robots, cosplay, self-harm, manga and bad poetry. I get it. The world is “crazy” and it’s all art. But if that’s not a freak show, what is?
Disabled people are no longer put behind glass or in the circus—at least not in the U.S., Canada or Western Europe—but many people still believe they reserve the right to stare, both in public and on the Internet. Whether under the guise of promoting diversity or admiring triumph in the face of adversity, they suppress any realization they may have that no one likes being stared at. Unless it’s on our terms.
I see endless art in my medical experiences and it can be so therapeutic. During my first limb-lengthening procedure I also had braces on my teeth, leading my dad to observe, “She’s now 95% metal.” Kinda cool. During my third procedure, I had Botox injected into my hips twice to paralyze my muscles lest they resist the lengthening. At the time, when I along with most people had no idea what it was, it was described to me as “basically the most deadly poison known to man.” Whoa, hardcore. When I happened upon photos of my anterior tibialis tendon graft surgery, I was enthralled: “I’m so red inside!” And when a fellow patient recently alerted me to the fact that a high-end jeweler designed a bracelet strongly resembling the Ilizarov frame, I laughed my head off. Almost all of us like looking at our bodies, and perhaps this is especially so for those of us who have had real scares over our health. It’s a matter of facing our fears and owning it. But no one likes the idea of others owning it. This subtle but severe preference, this desire for dignity determines the difference between human rights and property rights.
Two years ago, NPR featured a piece by Ben Mattlin, who is non-ambulatory and who said he used to be uncomfortable with the idea of Halloween and its objectification of the grotesque. From my very first costume as a mouse to my most recent stint as the Wicked Witch of the West, my love of Halloween has not so much as once flickered, but his point is worth discussing. Costume play, Halloween and any celebration of “weird” that is primarily attention-seeking inherently assumes there is a “natural” basis to be disrupted. (And all too often Halloween devolves into offensive imitations of all sorts of minority identities.)
I have my own collection of artsy photos stolen off the Internet that I use as screensavers and montages for parties, but they do not include photos of bodies taken outside the context of consensual artistic expression. Re-appropriating a photo in a medical journal for a site about all things bizarre is protected under freedom of speech, but it can feel like disregard for consent. And in any case, such xenocentrism will always be just as superficial as the status quo it seeks to disrupt.
When conjoined twins Abigail and Brittany Hensel agreed to be interviewed once—and only once—for a documentary about their lives (which I highly recommend), they explained that they don’t mind answering strangers’ questions at all. (Ben Mattlin has said the same, as do I.) What they hate more than anything is being photographed or filmed without permission. While attending a baseball game outside their hometown, a sports film crew quickly directed their attention to the girls. Even though they were already being filmed by their own documentary team, the stranger camera’s invasive, presumptuous stare ruined the day for them.
Sensitivity toward others’ experience with medicine and death should never kill the discussion. These discussions are imperative and art is the most glorious way we relate to one another. But just as there’s more to good manners than simply saying “Please,” there’s more to genuine learning and artistic expression than poking at anything we can get our hands on. Nuance, deference and respect are prerequisites for anyone with artistic or scientific integrity not only because they are the building-blocks of common decency, but because history has shown that curiosity will more likely harm the rat than the cat.
Originally posted May 19, 2012