first person

My 6-Year-Old Thinks My Disability Is Boring

Photo: Sofia Morais / EyeEm/Getty Images/EyeEm

I never liked children. This was most true when I was a child myself and was subjected to my peers’ constant curiosity about my body. Being stared at is my oldest, most familiar feeling. I have a rare congenital condition called sacral agenesis, which limits the growth of the lower half of my body and causes me to walk with a wide, side-to-side gait.

Adults trained in social niceties are better at masking their curiosity, but children simply gawk, point, comment. Recess was, predictably, the worst. In the less-supervised courtyard at my school, kids were free to circle me and stare. Some liked to make a game of my body. Boys would lift me as high in the air as they could to brag about how easily it could be done; girls, too, liked to carry me around and refer to me as if I were their living doll.

As I edged toward adulthood, I remained uncomfortable around children. They required a specific kind of energy and patience I didn’t always have. Any kid-friendly public space — a grocery store, a park — could become the site of a vocal interrogation of my body. Why are you so short? Why do you walk like that? What’s wrong with you?  Of course, I knew not to be upset at an actual child for asking these questions. But I did feel a general resentment about the fact that few public tasks could be completed without first being confronted by the oddity of my body in the eyes of others. I’d often stand silently and look the kid dead in the eyes until a scolding parent appeared to yank their child’s arm and hiss the pairing of words I’ve overheard more than any other in my life: Don’t stare!

When the interaction was over, I’d usually continue on with whatever I’d been doing, not giving the moment a second thought. But sometimes I’d feel angry, frustrated, embarrassed. Sometimes I’d go home and cry. Sometimes I’d think it was unfair that I had a body I was constantly asked to decode in order to satisfy someone else’s curiosity or ease their discomfort. Always, I dreaded the moment my body would be in a public space. My interactions with kids and their families bothered me the most because I always felt I’d made some significant mistake. It took me becoming a parent — which is to say it took me way too long — to recognize just what was going wrong.

In 2011, I gave birth to my son, Wolfgang. On his first day of kindergarten, my husband and I walked him to class, feeling the ordinary mix of parental anxiety and excitement. I couldn’t stop looking at my son and thinking how strange it was that I was about to hand him and his education over to the care of strangers. I was so distracted that — right in front of his school, in the middle of a swarm of children and their parents — I tripped and fell, hard. There was an immediate ripple effect of children’s eyes turning to me; some gasped, some laughed — some parents, likely on edge for the same reasons we were, whispered rebukes to their children. A nearby parent was frozen in embarrassment. Another ran toward me spewing apologies for her still-cackling child.

The moment expanded. It felt like an entire city block was staring at me. I’d forgotten that having a school-aged child meant having to walk into a kid-packed space twice a day. My son looked confused and I realized that this might be the first time he was registering other people’s heightened reactions to his mother’s body, a body he found so profoundly boring and normal.

On the walk home, I tried to dismiss it all. “Kids don’t know any better,” I said to my husband. “Neither do the adults,” he responded.

The truth of my husband’s statement wasn’t one I loved to think about. The lack of representation of bodies like mine in our culture means that a lot of people grow up without receiving any education about disability. I, of course, wasn’t helping when I openly glared back at gawking children in supermarkets. And well-intentioned parents weren’t doing anyone any favors when they scolded their children and pulled them away from me.

Watching my son run into his new school, I realized how desperate I was for others to help me raise him with a nuanced understanding of the world and its diverse inhabitants. I was hoping others would do for my son what I, myself, had not always been willing to do for other children.

A year later, I took my son to the swimming pool. I laid out in a lounge chair, feeling self-conscious and overly exposed in my swimsuit. Kids raced past me and stared, or didn’t. I thought: Here’s my chance. I’m going to sit here in my odd body in full view and smile and answer questions and be the best disabled person in the world.

My son, now 6, had found a girl his age to play with. I chatted briefly with the girl’s mother, who was sitting in the lounger next to mine. After a while, our kids emerged from the pool demanding snacks. The young girl watched, with great reservation, as I walked my sloping walk with my son to a concession stand to buy him an ice cream sandwich. When we returned, the girl’s mouth hung open.

“Why does your mom walk like that?” she asked my son. I saw her mother begin to say something and then look down, embarrassed, hoping maybe that we could all pretend we hadn’t heard her daughter’s question.

I stretched my hand out to the mother in what I meant as a soothing gesture and then looked at the young girl. I had my plastered smile and my, Everyone is different and that’s okay! speech locked and ready to go, but before I could speak, my son shouted happily, “My mom has a disability!”

He walked a few steps in his own style and then walked back mimicking mine.

“I walk like this, and my mom walks like this. You wanna walk with me?” The girl shrugged and then did a half-skip beside him. They kept skipping back and forth. The other mother and I watched in silence. The kids stopped in front of us, licking melted ice cream off their wrists.

Breathlessly, my son continued talking at the girl, “Also, my mom’s skin doesn’t burn in the sun because she’s part jalapeño.”

Mother and daughter looked confused.

“He means Filipino,” I clarified.

“Also, if you have any questions about Roger Federer, you can ask her. She’s really loud when she watches tennis, she’s like, ‘Oh! Rog! What are you doing, Rog?’” It was a pretty good impression. “She’s really short, which means I’ll definitely be taller than her soon and she’s on a diet right now which is why she won’t eat an ice cream sandwich and —”

“Okay,” I said, interrupting. It was my turn to be embarrassed, but the other mother was laughing and able to look at me again. Our two kids promptly lost interest in us, finished their snacks, and returned to the pool.

Later, as we left, the young girl asked me if I knew how good ice cream sandwiches were and if I did, why would I chose a diet that excluded them? The careful, uncomfortable way she’d previously regarded me was long gone. We’d crossed an invisible bridge. Not because I’d explained, as planned, that we are all different, but because my son had explained me as singular, specific. In the eyes of my child, my disability was little more than a notable, if ultimately uninteresting fact among many. Which is just how I long to be seen.

My 6-Year-Old Thinks My Disability Is Boring