I live in a body that doesn’t count.
My body is exempt from conversations about standards of beauty. It’s not expected to conform to the ideal and not berated for falling short because my body doesn’t matter.
Disabled bodies like mine are tools used primarily to tell stories of either heroics and strength or tragedy and sorrow. As a disabled person, I have few examples in the media that show people like me as complete, flawed, and boringly average. As a woman, I am used to the fact that what I look like is considered to be either my greatest asset or saddest failure. And as a physically disabled woman, I am a sad afterthought in a society where women’s bodies make up a large portion of their value.
I’m what’s known as a “congenital amputee,” a term that mixes science with horror and describes a part of my body. In my case, I have no fingers on my right hand, just half a thumb and four nubs. Growing up in the 1980s, we all referred to my hand as a birth defect. At the time, of course, I never thought about the fact that I was calling myself “defective,” like a bad bolt coming off the assembly line. In fact, until I reached elementary school I never gave my hand much thought at all. I quickly learned, however, that I was different. People started staring, or, to be more accurate, I started noticing that people were staring. When teachers would ask my me and my classmates to hold hands and get in a circle for some kind of student bonding experience, other kids would refuse to hold that hand, choosing instead to hold it by the wrist, leaving my hand dangling like a rotting piece of fruit on a vine.
There were many afternoons after school when I would crawl into my mother’s bed to cry and ask, “Why me? Why did I have to be born like this?” My mother would answer, “God never gives us more than we can bear.” That wasn’t very helpful, mainly because my mother and I are both atheists.
But now that I’m a mother, I understand why she would reach into that abyss where there are no good answers for any phrase or saying that might provide some sort of comfort to her child. There’s no good way to tell a seven-year-old why, through no fault of her own, she will forever be noticeably different in a way that many people will find uncomfortable.
Like running into a supermodel at the grocery store (though decidedly at the other end of the spectrum), people do stare when you have a disability. I can feel the stop, like a hiccup, when people notice it for the first time. I can hardly blame most of them because chances are they’ve never seen anything like me up close. But while I can empathize with what it must be like to run into a person whose body is unusual in some way, it doesn’t feel any better when that unusual sight is you. It’s cliché to compare it to being in a freak show at the circus, but every day I struggle with whether or not to leave my hand visible for public viewing or hide it and stay comfortably off stage.
Personal representation weighs heavily on the disabled because we don’t often see each other out in the world. I rarely saw physically disabled people like me on TV or in films as a child. We were either featured in the “very special episode” of Punky Brewster to teach the lead characters about diversity, or in news stories after a shark attack. When I tried to come up with recent movies featuring a physically disabled woman, for example, the only one I could come up with was Million Dollar Baby, in which the lead character, a female boxer, asks her trainer to help her die after she becomes a quadriplegic, like when her father shot an old dog of his that went lame.
Little People, Big World; The Amazing Race; Dancing With the Stars; Britain’s Missing Top Model: all of these shows have featured people with disabilities. I don’t want to discount the power of seeing someone who looks like you on television—these shows can be inspiring and meaningful in the lives of the disabled. But it’s also important that we recognize the context that the disabled are being shown in, and how disabilities are portrayed. With all of these shows, though it’s more blatant in some than others, disabilities are viewed as barriers to overcome. The disabled show that they can do everything an able-bodied person can do.
While years ago I might have found that inspiring, I now resent it. I resent the portrayal of disability as a loss one is trying to triumph over; that success can come despite one’s disability; and that if the disabled work hard enough, they can be just like everybody else.
On reality TV, in contrast, the physically disabled are regularly featured as heroes overcoming the odds. Whether focused on the disabled or merely featuring a disabled person, these moments serve to expose and educate and must be valued for that. But it’s exhausting to be seen only as a teaching tool. It seems to be easier to include the disabled this way, like the subjects of a documentary on supernovas, or a wildlife program on Animal Planet, where we get unusually close to strange creatures in their environments. (“The summer heat has been hard on this pack of Smiths. Now, they must visit the grocery store to find the Fiji water and meat that they crave.”)
Shows like Little People, Big World and Britain’s Missing Top Model familiarize people with some forms of disabilities, and also give the public a safe way to stare and make comments in the privacy of their own homes.
As the New York Times said in its review of Little People, Big World:
This documentary… [arouses] our voyeurism while also condemning it. This is a workable pact as long as it’s kept unspoken ― we get to stare at unusual bodies while pretending to do something good for us ― but it also rankles. A real freak show would be much more indulgent than this, and a good lecture on physical diversity would be much more rigorous.
Though the goal of these shows may be to educate and familiarize, this is not done without also fetishizing and reinforcing difference. The “hows” and “whens” of representation are a big deal.
As a woman with a disability, I’ve noticed that there isn’t much in popular culture that I can fully relate to. In TV and films, where a woman’s looks, youth, and sexuality are typically an assumed part of her character, disabled women rarely figure in.
It’s relatively easy to come up with titles featuring disabled men: My Left Foot, Born on the Fourth of July, Rain Man, I Am Sam, What’s Eating Gilbert Grape, The Elephant Man, Forrest Gump. But physically disabled women? There aren’t many out there. And there are even fewer disabled female characters who are played by disabled women (Marlee Matlin in Children of a Lesser God is the only one that comes to mind.) There are exceptions: It’s fantastic to see female actors with Down Syndrome playing lead roles on Glee and American Horror Story, but both of these shows were created by the same person, writer and producer Ryan Murphy. It’s not like this kind of inclusion is sweeping Hollywood.
Fictional stories are meant to be used as an escape: a way to get out of the real world and into fantasy land. In the film Frida, it’s easier for us to see Selma Hayek in a wheelchair when we know that she is going to bound out of it at the end of the day with her gorgeous face, her fantastic body, and her two eyebrows to roll around in her swimming pool filled with money. There isn’t much interest in looking at real women with disabilities. Part of the fantasy of film is the physical perfection of the people on screen, and this is all the more important when it comes to women. When a woman has a disability, she instantly loses much of her worth. All women start with a smaller voice in our culture—take away their beauty, and you render them mute.
I spent much of my early twenties trying to prove to myself that I was attractive. No matter what I looked like, I believed that my hand disqualified me from normal flirting and dating. People don’t joke about whether or not they “would” be with someone like me, but whether or not they “could” be with someone like me. So I slept with everyone who showed the slightest amount of interest, thinking that this meant that my disability didn’t matter. And perhaps for some of those men, it didn’t. But the truth is that many men are willing to look past a whole lot if it means they’ll get laid.
The disabled are often portrayed as sexless because people aren’t comfortable imagining the disabled as sexual beings. We are “other,” and people aren’t supposed to be into sexual relations with anything that is “other.” I thought that because I was the only slutty disabled woman I had ever heard of meant that I was somehow normal—that I was just as attractive as any other girl. It was important for me to think this way because imagining that my disability did matter to men would mean seeing every man I dated as either a saint or a pervert. It took me right back to being either an object of pity or an object of awe. 
It meant that any man I ended up with would have to be either proud of how open-minded he was, or excited to be filling out a square in some kind of fraternity bingo card. I believed that until I met my husband, for whom my hand is both completely unimportant but also part of who I am and why he loves me.
Today, I’m the mother of an able-bodied daughter who will at some point have to deal with her own insecurities about her body. And while I am very careful never to use the word “fat” or to make any other comments (positive or negative) about my appearance around her, I know that she has started to notice that the other kids in her first-grade class stare at my hand. I don’t know what it will be like for her to have a disabled mother, but I will do everything in my power to let her know that I am comfortable with not just the shape of my body, but also its differences. Though she may not see other people like me on her TV shows or in her books, she will see me. And she will know that her mother will love her no matter what she looks like, because her disabled mother loves herself.
So no, I don’t wish I’d been put down like a dog because of my disability. I don’t hate my body. No, I will never play Beethoven on the piano, go on a speaking tour about my struggles with the left-handed can opener, or dance a foxtrot with Derek Hough on national television. I will reside happily in the middle with everybody else, reconciling myself to a life of stares and explanations while I play with my children and peck away on my laptop. And I’ll hope that the young girls and women out there with disabilities will be able to come to peace with their bodies, beyond the size of their thighs or the texture of their hair. That they will believe in their right to love and be loved without qualification and without heroics. And maybe they’ll get to see someone like themselves on the big screen to fall in love with Idris Elba, too. (If they have trouble filling the role, I will happily volunteer.)
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Photo credits: Featured photo. Photos 1 and 2 provided by author.
