As a woman with dwarfism, my height is what people notice first about me. And they’re usually not all that quiet about it. Some women might say it’s their eyes, shapely legs, their bright smile or shiny hair—but for me, I could sing the national anthem whilst bending over buck naked in Walmart and the first thing you’d notice about me is my height.
And having lived in this body for thirty-some years, there are a few things I know to be true.
One is that people are innately curious about the practical stuff—how I drive, where I find my clothes, and if I’m able to have children. People make a lot of assumptions—like that I still live at home with my parents; that physically, I’m fragile and weak and not able to carry much more than a gallon of milk; and that I am that short girl you saw on the latest reality show, because as everyone knows, we’re all one and the same. The other thing I’ve realized is that when people first lay eyes on me, they tend to lose any social discretion, i.e. decency, they might have had left.
Once while holding up a pair of black panties in Target, trying to decide if I was still an extra small or if winter food and wine had moved me up a size, a woman marched up to me and asked point blank, What happened to you? as if I’d shrunk before her eyes and she deserved an explanation.
And after driving back from an oncology appointment at UVA’s Emily Couric Cancer Center, I stopped into my local Starbucks, counting on the psychological effects of sugar and caffeine to set my nerves straight, only to have the man standing behind me lean down and whisper, his breath warm on my ear, Do you think you could handle me? I can only assume he wasn’t referring to his stunning personality.
Another thing I’ve learned is that dwarfism is synonymous with misconceptions.
Here are two.
Misconception number one: Something’s wrong with me. There’s nothing wrong with me. I don’t “suffer” from dwarfism (a term the media overuses to portray anyone with a disability) and I’m not a medical anomaly to be fixed. I’ve no desire to undergo the barbaric limb lengthening surgery that might gain me a few inches but also guarantees a lifetime of pain and waddling like a duck.
Rather, what I “suffer” from is people’s perceptions of me.
The fact that I live in a world created for people two feet taller than my nearly four foot frame is no big deal—that chairs, desks, kitchens, public restrooms, counters of any kinds, bra straps, ATM machines, vehicles, pants, shoes, airplane seats, blood pressure cuffs, and those blasted bag and coat hangers they put at the top of disabled bathroom doors do not work for me is the least of my worries. Because when you have dwarfism, you learn to live in a world designed for someone else. So even if the sinks in public restrooms remain lofty aspirations, credit card readers are never placed at a decent height, and Louboutin never makes heels in my size, it won’t be the end of the world.
While society as a whole might label dwarfism as a defective gene; abnormal, malformed or diseased—a disorder in need of being cured or fixed or altogether obliterated from future generations by way of gene therapy or prenatal screening—the majority of people with dwarfism wouldn’t touch these descriptions with a barge pole.
Which leads me to misconception number two: I’m special. As many a disabled person will tell you, there’s nothing much worse than being put on some sort of downgraded, pitying pedestal. We’re not an inspiration, a miracle, your hero, or any other wonderment of the universe. We are not what everyone now refers to as your ‘inspirational porn.’ And for the love of all that is decent in the world, we couldn’t be further from the triumph-over-tragedy stories that grip a lot of people’s hearts and is the bedrock of Lifetime TV.
The fact that society finds anything a disabled person does inspiring, such as earning a Ph.D., traveling the world, or making babies, serves only to further set us apart from everyone else. That I get myself out of bed every morning, run on the treadmill, and go to work—despite my height—inspires people to run marathons, climb mountains, and live their life to the fullest is truly confounding to me.
Don’t get me wrong. Inspiration isn’t necessarily a bad thing. But in my personal lexicon, inspirational equates to different, special, and set apart. So when the stranger in the parking lot stops me, touches my arm and says, You’re such an inspiration, I can’t help but cringe. And the older I get, the less I care to hide it. Because the one thing I’ve longed for my entire life, the one thing I wanted as a child on the playground and the one thing I want as a thirty-something adult, is to be treated like anyone else–to be given the same opportunities as the kid, the student, and the professional woman standing next to me–not different, not special, and not your personal hero. Trust me, I’d trade in your admiration for a chance to wear a pair of black Louboutin heels any day.