I grew up in a bi-cultural family.
I may have spoken my parents’ language and followed their customs but, as a child with a disability, I belonged to another culture as well: one with its own history and heroes, its own language and humor. Unfortunately, I knew nothing about it.
Just as adoptees from overseas benefit from meeting others who share their heritage, I would have benefited from meeting someone who shared mine. We all need people who are mirrors for us, who reflect back to us something of our uniqueness and our best selves.
Don’t get me wrong. I’m all for mainstreaming. How else can we teach children with disabilities that they can live big lives in the big, wide open world, except to place them right in it? Yet, if I had known even one other child like me out there in that big world, I would have felt more certain I belonged.
Raised by my birth parents, I certainly saw myself in them. I have my father’s dark eyes, my mother’s long nose, his analytical mind, her love of music and books. Like me, my mother was not particularly athletic. Still, we were not the same. I remember walking behind her and noticing how pretty her legs were. Pretty because they were even. One of my legs is shorter and thinner than the other. Unlike anyone else in my family, I walk with a limp.
Once a month, we drove to United Cerebral Palsy, where I had physical therapy and walked barefoot on scratchy runners while doctors with clipboards took notes. I hated that place with its smell of saliva and dust. The other children I saw at UCP had twisted bodies that jerked and shook in their wheelchairs. They drooled and made loud, startling noises when they tried to speak. I didn’t want to see myself in them, especially as I watched my mother bristle and stiffen in their presence. Still, they had what I had. Did that mean that there was a part of who I was that she also couldn’t bear? The only other person I knew of with cerebral palsy was an older boy I occasionally saw in my neighborhood. His gait was similar to mine, but it was clear his C.P. also affected his mind. He talked to himself and made strange gestures; he was always alone.
Like many children with physical limitations, I was taught to take pride in my intelligence. I may not have kept up while my friends tooled around on their bikes, but my mind, I was promised, would take me where I wanted to go. This message about what made me valuable was strong, so much so that I felt horrified at the idea of being associated with someone with mental disabilities. Unfortunately, such prejudice is prevalent in the disabled community, dividing us the way racism has at times caused dissonance between light and dark skinned blacks.
“Retard!” kids called when they saw this boy. “Spaz!”
I averted my eyes.
One day, I noticed that he had bleached his dark hair surfer-white. I felt embarrassed, not for him but for me.
God, I thought. Is this how ridiculous we look when we try to fit in? Yet that is exactly what I tried to do.
I was successful. I did well in school, had a group of good friends, and a succession of boyfriends in high school.
“We don’t even notice it,” my friends told me. And, “I never think of you as disabled.” These words were meant to be reassuring. Instead, they made me feel lonely and misunderstood.
So, for a brief time in my twenties, I became a stalker.
The first woman I followed had sleek red hair and wore a trendy black outfit. I trailed her up Bleeker Street until she made a right on Jones. What would I say if I caught up to her? Excuse me. I couldn’t help noticing you limp. Look, I do, too.
The next woman bopped along to her walkman. Another walked arm in arm with a handsome bearded man. These women remained strangers to me, yet I liked to imagine I knew something of their lives. They resided in the city, had lovers, good friends and interesting work. Like me, they lived fully in the non-disabled world. This gave me a glimpse of how others might see me. A busy, energized young woman.
Around the same time, I had finished my MFA, was teaching writing, and occasionally got invited to do readings of my work. At one such reading, I was to be part of a panel of women writers from various cultural backgrounds. There was an African American poet, a Latina poet, and me. I represented disability, and I felt good about this role. Maybe, just maybe, difference was something I could learn to celebrate.
I took my turn reading my poems, including the few I had about disability.
A panel discussion followed during which we responded to questions from the audience. There was one woman whose insightful questions piqued my interest. She had a warmth and energy I really liked. Afterwards, as I was putting my papers away, I looked up to find her waiting to talk to me.
“I loved your poems,” she said.
“Thank you. I really liked hearing what you had to say.”
For a long moment we smiled shyly at each other.
“Well,” she said. “I better use the bathroom before I get on the subway.”
I watched her walk away. Her gait was stiff and awkward and familiar.
Stalker that I had become, I followed her into the bathroom.
Hope and I sat in a coffee shop, ignoring the muffins and tea we’d ordered as an excuse to be there. We talked breathlessly.
“How did your parents explain it?”
“Did you know anyone like us growing up?”
“I always had this punched-in-the-stomach feeling in gym class.”
“Dating. God, dating!”
We leaned into the table, nodding at each other’s words in complete comprehension. Again and again, we finished each other’s sentences.
Hope loved good novels, worked as a pediatric nurse, was politically active. There were many reasons she was someone I wanted to know. And we’d get there. We’d talk about books and meaningful work and politics. We’d talk about her son, David; and years later, when I had my son, I’d call for advice. Or I’d think of her, doing it first and doing it well, and gain confidence in my own ability to mother.
But for now, we were only hungry for talk about disability. Hope spoke my most personal language. She knew the terrain of what had been, until then, my lone country.
I fought the urge to ask her, “Where have you been all my life?” Though maybe I should have asked, “Where had I been all my life?” that I had never before made a connection like this one.
That day, sitting across from my compatriot, my sister in disability, it occured to me that those few times I had followed strangers down the streets of Manhattan, I was actually doing something quite smart. I was trying to find my way here. I was trying to find my way home.