This evening, I read a wonderful post at the blog, What Do You Do, Dear? Mary Evelyn, who happens to live in the best city in America (hello, Columbus!), writes about raising a child with spina bifida. In her post, “Standing is Stupid,” Evelyn describes mixed feelings when her son Simeon first stood. She snapped a photo of him in his new leg braces and then posted the photo on Facebook. Soon after, her mother called, delighted, reporting that ‘Everyone is so excited…”
But Evelyn says she felt panicked. I don’t want standing to be important, she thought. Here’s Mary Evelyn:
“I was afraid that the world would see Simeon as a failure if he wasn’t the exception to the rule of his diagnosis. It seemed that everyone believed my son would have to stand up and walk—to ‘beat’ his disability somehow—in order for our situation to not be ‘so bad.’”
I nodded when I read this. Fiona walks now, which is wonderful. But as she toddles around, arms reaching out, feet slapping toward something that interests her, I’m noticing a narrative creep up around her. It’s not pervasive, but it’s present. It’s crafted by well-meaning people, people who adore Fiona and enjoy cheering her on. Sometimes these people insist that Fiona has “beaten the odds.” That she has “really shown those doctors, who underestimated her.” That her walking “is a miracle.” Isn’t it a miracle, they might turn to me and say, smiling.But in walking, as with many things, Fiona hasn’t beaten the odds; she’s been living smack inside them. Odds were about 50/50 that she would walk. And while we are all super grateful that she can walk, well, thems just the odds. Also, the timing of her walking is on-par with many of her peers. As this uber-academic article on Wolf-Hirschhorn syndrome says, “Those, who are able to walk, [typically] learn it between the age of 3 and 5 years.” This isn’t always the case, and people with Wolf-Hirschhorn syndrome have learned to walk well into adulthood; but many kids seem to learn at about age 4, just as Fiona did. To boot, I’ve always been up front that Fiona’s diagnosing doctors weren’t naysayers. Although plenty of parents describe horrific first encounters with doctors, somehow my husband and I escaped that fate. Her diagnosing geneticist was honest, open, and encouraging. He encouraged us never to put limits on her, to let “Fiona be Fiona.” (She was three months old. Look at Fiona Being Fiona then! So onyx-eyed.) So where does this narrative come from? That my girl has somehow become the exceptional example? Proven all those doctors wrong? That walking makes her an unbelievable triumph? It’s not coming from Fiona or me. It seems to be sprouting up around us like grass, a blade or two here and there.
I think it comes from people’s desire for inspiration. I think it stems from people’s yearning to see life fit the crescendo of a Hollywood movie. I think it illustrates the expectation that life’s natural trajectory should arc toward trophies. This doesn’t especially bother me; I get it; I’m a sucker for underdog baseball movies, too.
But in this case, the “beat the odds” narrative imposed on Fiona exposes the belief that triumph cannot possibly occur in a wheelchair. That triumph occurs when the disabled body becomes less so.
And this is where I get uncomfortable. Because if my daughter experienced the world in her Zippy wheelchair, which her physical therapist ordered a year ago and which weighs zilch and turns on a dime and is the most pristine, impressive machine in the house, she would still rock this life. Just as plenty of kids with Wolf-Hirschhorn syndrome rock their lives.The belief that “a more able-bodied life is more triumphant” also makes me uncomfortable because my daughter is still living in a disabled body. A body that exists far outside the charts. A body that cannot speak more than two words and that struggles to separate her fingers and that wavers when she stands, and sometimes falls. And she will still rock this life.
Mary Evelyn ends her blog post by rewriting the advice she got when she was a new mother. People said things like, I know someone with spina bifida—and he can walk. Or, I know someone with spina bifida—and he plays soccer. She vows to give different advice. To new parents, she’ll say, I know someone with spina bifida and he’s got a great sense of humor. I know someone with spina bifida and he’s got a lot of people who love him.
These, these are things people need to hear. Not, Don’t worry, your kid might not be so disabled, which reveals itself for the well-meaning but ableist comment it is, propping faith up on the shoulders of bodies that don’t do things like walk or play soccer. Instead, we can remap the triumphant plot. We can run off the race’s course, skip the finish line, and zigzag toward a field of something wild and blooming, reminding ourselves of what matters in this world.
To take a note from Evelyn, here are mine:
I know someone with Wolf-Hirschhorn syndrome, and she charms the pants off anyone in the room.
I know someone with Wolf-Hirschhorn syndrome, and she coos with love during morning snuggles.
I know someone with Wolf-Hirschhorn syndrome, and she might just be the best thing that’s ever happened to me.