When I was in graduate school at Ohio State University, learning to sniff out the bullshit in my writing, straining to write as honestly as possible, I read an essay called “The Visible Cripple (Scars and Other Disfiguring Displays Included).” The author, Mark Jeffreys, describes a family life in which multiple members have disabilities. Both Jeffreys and his father has osteogenesis imperfecta, otherwise known as brittle-bone disease. For both of them, standing was a potentially bone-breaking act. Jeffreys’ adopted Korean brother, Jim, was born without legs. In the essay, the author writes primarily about Jim, about how he tore off the legs of his muscled action figures even while his parents encouraged him to use prosthetics.
I’ve always found one section of this essay especially memorable. For a wedding portrait, the family attempts to create the illusion that all members can stand comfortably on two (real or prosthetic) legs. Even though Jim finds his wheelchair more comfortable, he stands without crutches, partially held up by the shoulder-to-shoulder support of his brothers. Jeffreys’ father casts aside his own wheelchair and holds his wife’s hand “in apparent affection” but actually to ensure he doesn’t topple over. Several more family members put on similar performances:
Peter, born with spina bifida, stands so that his partial paralysis looks more like a casual, hipster’s slouch. Clark, who had polio as a child in Korea, stands in the second row so that his legs cannot be seen. My own brittle bones were at that time supporting me fairly well, so I stand in the front with a smug look on my face, perhaps because I knew I could pass, or perhaps because I had been mischievously teasing Jim about leaning on him and causing the whole house of cards to tumble. Oddly enough, even our able-bodied youngest sister, Alice, who was coincidentally recovering from a broken leg, had her crutches taken from her and stands awkwardly, her weight on her good leg.
Jeffreys goes on to say that the family, plenty familiar with a lifetime of staring, simply wanted a portrait that looked “normal.” “We understood that if our disabilities were framed, our disabilities would frame us, and we wanted to exclude them so we wouldn’t vanish behind them.”
I’ve been teaching this essay in college-level courses on and off for eight years, and I’ve always loved it. Sure, it says all kinds of smart things about “corporeal otherness” and “the cultural construction of normalcy,” but I love this essay most for its honest examination of the family portrait, for its admission about the balance and risk the portrait required, for the tension between how things are and how we’d like them to appear.
Today is Honest Facebook Day. Started by author, Andrew Ervin, Honest Facebook Day is by no means a national movement, but I’d love it to be. The purpose is, in Ervin’s words, “to tell it like it is.” To try to be as honest as possible about these lives we represent on the Internet. And so, let me tell it like it is:
When I was in graduate school, I read Jeffreys’ essay and blamed the parents. They were requiring their kids to perform so-called “normalcy” at the expense of authenticity. And authenticity, I thought to myself — I still to think myself — is the gold ring.
When I was out of graduate school, when I was married but childless and taught this essay to freshmen, I still loved it, still reasoned that I would never force my future children into some kind of performance for a camera. No way. It had been done benignly to me (“Smile and pretend you’re having fun,” my stepfather once said on a vacation) and I refused to do it to my hypothetical kids.
And then last week I held a camera in front of Fiona. It was her first day of preschool. I envisioned a portrait like I’d seen in the Facebook timelines of dozens of other parents I knew, parents whose kids also had Wolf-Hirschhorn syndrome. The kids stood with their walkers on late summer lawns and smiled. Their walkers spoke volumes. Their walkers said, This kid’s getting nearer to independence. This kid’s headed on his own two feet. I figured that my daughter, who up until a few weeks ago has loved her walker, would totally comply with my vision.
On that first day of preschool, we were borderline late. Just before we rushed out the door, I grabbed the camera. “I need a picture,” I told my husband. But my husband had already buckled Fiona into her wheelchair. And Fiona, who loves her wheelchair, was beaming. Kicking her shoes against the footrest. Smiling with little squeaks of enthusiasm.
I put her walker next to her wheelchair. I started to unbuckle her. “Do you wanna stand with your walker?” I asked her. A.k.a., “Don’t you wanna stand with your walker? Don’t you wanna help momma create a staged memory for posterity?”
Fiona shook her head no.
I didn’t dwell. I rebuckled her belt.
I could have analyzed all the reasons why I wanted my daughter to stand rather than to sit in a wheelchair. Maybe because I was bubbling with anxiety that day, I was extra sensitive to perceptions. After all, I was about to send my nonverbal, non-ambulatory daughter to a school where her teachers didn’t yet know her — didn’t know her signs, didn’t know her gestures — and where every other kid was both verbal and ambulatory. Maybe I was anxious about how my daughter would be seen as the only kid in school with a wheelchair. Maybe I understood that, as Jeffreys says, if her disabilities were framed, her disabilities would frame her. Maybe I was attempting to frame her in competence so that, in the following hour, her teacher would magically do the same.
But none of this went through my mind when I stood in the living room in front of my feet-kicking, wheelchair-happy kid. I simply. Wanted her. To stand. She simply wanted to sit in the chair.
Again, I didn’t dwell. I held my camera. I took a step back and assessed the portrait I’d take: Fiona, sitting in her narrow wheelchair with a blue ski cap on her head to fend off the morning chill.
The picture alone isn’t a grand admission. It’s just another adorable photo of Fiona. But I’m posting it on Honest Facebook Day for all that the picture reminds me: I sometimes seek perception over authenticity. I sometimes want my daughter to be other than she is. Even though I’ve studied with disability scholars, even though I’ve read texts by people like Mark Jeffreys and Lennard J. Davis, and even though I’ve thought long and hard about the culture’s illusionary dance of normalcy, I am in no way immune to that dance’s entrancement. I still have a long way to go. And Fiona will go as she pleases, waiting for me to catch up.