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.
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.
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. 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.
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!”“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.
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