Months before, my husband and I had adopted a little girl whose limbs are either absent or incomplete. In that short time, we’d learned that children with visible differences are frequently subjected to public comment and speculation.
Our trip to Asia to meet our daughter included some rough moments. We were new to our daughter, and she — and her needs — were new to us. In her birth country, we encountered some cultural prejudices and superstitions about disability, making us long for home. Things, we were sure, would be better on good old American soil. How wrong we were.
We came home with jet lag and the flu. For days, our daughter was violently ill. When she was finally better, I was exhausted and up to my eyeballs in laundry. The four corners of the house that I had so badly missed were closing in.
One night when I asked my husband what we should do about dinner, he said, “It’s Taco Tuesday. Let’s go out.” I nodded. Margaritas and homemade salsa sounded heavenly.
At the restaurant, we ordered and were waiting for our food to come when a little girl a few tables over exclaimed, “Look, Mommy. She doesn’t have any arms!” I glanced up to see the girl’s finger extended in our direction. The child’s mother noticed, too.
“Stop pointing,” the woman screeched. “You’ll make them feel uncomfortable.” The pitch of her words shook the place. Anyone who hadn’t noticed us before, did now.
“Why is everyone staring at us?” my 3-year-old son asked. “I don’t like it.”
I knew how he felt — I didn’t like it either.
We thought that with time, the attention would taper off. We were wrong about that, too. Those first few months, almost everywhere we went, there was pointing, gawking and general unkindness. It was mostly understandable coming from children, but adults were the worst offenders.
During a trip to the aquarium, my husband took my daughter to look at the multistory fish tank while my son and I stopped at another exhibit. When it was time to meet back up, coming around the corner, I saw a crowd gathered near the massive fish tank.
I took my son by the hand and quickened my pace. “Come on,” I said. “The diver must be in the tank feeding the fish.” We waded into the crowd, only to realize that the throngs weren’t looking at a diver — they were staring open-mouthed at our daughter, who had gotten out of the stroller and was pushing it with her chin while she scooted along on her bottom. When I looked at my husband for an explanation, he shrugged. “She wanted to,” he said.
I vacillated between wanting to punch people in the face and wanting to be Teflon, with nothing anyone said, or did, sticking. Above all, I wanted my children not to be the subject of near-constant public scrutiny. A little boy in the waiting area of my son’s taekwondo class saw my daughter coloring with her feet and approached us with questions about my daughter’s arms and legs. I answered the questions. He asked more. I answered again. When he persisted a third time in a not-so-nice way, I abruptly changed the subject.
“He’s just a little boy,” his mother said, her tone part apology, part defensiveness. Only later did I realize what I should have said: Yes. And, she’s just a little girl.
“You need thicker skin,” a friend said, after hearing me complain about the nonstop barrage of comments. I decided she was right. If other people weren’t going to change, we would have to. While I waited for my skin to callus and my heart to numb, I stopped making eye contact with strangers. At the playground, at the store, in the doctor’s waiting room, the kids and I did our thing and went home. We weren’t rude, just less approachable. But being unapproachable doesn’t make you invisible.
In therapy, my daughter used a loaner chair to learn to drive a power wheelchair. When it came time to choose the color for her own wheelchair, I hoped that she would opt for blue or red. Instead, she chose a shocking hot pink. Just what we need, I thought. Something to draw more attention to ourselves.
The wheelchair does draw a lot of attention — people are amazed by its capabilities, and by my daughter’s driving skills. One day my daughter and I were at the grocery store picking out celery when a slight, white-haired woman approached us.
She told me about her brother. “He was crippled,” she said. “When he was little, my father rigged up something with wheels for him, but it was nothing like that.” She nodded at my daughter’s chair.
“I wish he could have had something that let him get around the way she does,” she added. Her voice was wistful; her eyes teary. I squeezed her hand.
Last spring, a family trip to a cove with an educational visitor’s center coincided with a school’s field trip to that same spot. My kids were playing in the water when the children from the buses went streaming by. One of the school girls said, “Look that little girl is so poor, she doesn’t have any arms!” When I told the story to my husband later, I laughed so hard I almost cried. But I knew that little girl’s statement was more a reflection of what is lacking in her own life, than what is missing in my daughter’s.
In the first grade, everyone gets a turn being Super Star. Recently, my daughter came home with pictures her classmates drew of her during her special week. Many pictures included her pink wheelchair, but it was the one captioned “well chair” that caught my eye. This may have been a misspelling, but when I read it, I thought about the woman from the grocery store whose brother could have used a “well” chair.
We were at the airport a few weeks ago waiting to board a plane with other families with small children. The little girl behind us asked a question about my daughter’s arms. “We’re all different,” her father said. The girl, not be dissuaded, asked, “But why?”
I turned around and said, “It’s just how she was born. It means she gets to drive a pink wheelchair.”
“Really?” she asked, incredulous.
“Really,” I told her.
She looked down at her own arms and legs and said, “I’m so boring!”
Everyone within ear shot dissolved into laughter.
I’m glad I never got thicker skin. Being thin-skinned allows me to enjoy these moments that are tender to the bone.
Jessica Graham is a freelance writer and mother based in California. Find her online at inpursuitofloud.com.
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