My three-year-old daughter, Sadie, was getting her hair cut at a new salon. This would be enough to set any parent on edge—the possibility of tantrums, a stranger wielding a sharp object near your child’s face—but I was most worried about the inevitable comments.
My daughter has albinism, which means she has white-blonde hair, little pigment in her skin and has pale blue eyes. She has low vision, so facial expressions and the identity of people standing at distances more than 10 feet can be difficult to decipher.
At our regular hair salon, which is bubble-gum pink and caters to the pre-tween set, I’ve put a note in Sadie’s file so that the stylists won’t make inappropriate comments or ask questions about her hair. A few times employees have missed the memo but mostly they stay mum, Sadie watches part of Frozen, and she walks out with a lovely little page-boy cut.
Today, however, we were in the middle of an extended visit with my parents in their small town and Sadie’s hair needed a trim, so I reluctantly brought her to a tiny salon on the main street. Deb, the owner, styled my grandmother’s hair until she died in 2007, and she’s cut both my hair and my mom’s hair. Four generations down, she was clearly perplexed by my daughter’s icy locks.
“It looks like there isn’t any colour at all,” she said and then asked if Sadie’s hair had been bleached by the summer sun. My mother was with us, and she stepped in to explain albinism. I felt my chest tighten. My little girl sat silently in the adult-sized chair, propped up on a phone book and engulfed in a silvery hairdresser’s cape.
Then, the doorbells chimed and a soft-bellied farmer stepped into the shop.
“No time today, Al,” Deb said. “I’m booked.”
Al sighed, tugged at his suspenders and lingered in the doorway for a moment.
“That’s some white hair,” he said nodding towards my daughter. “I’ve only seen that kind of hair once before. The Millers over in Belford. The whole family had white hair like that.”
He was referring to a nearby town (I’ve changed the surname and the location). I don’t know this family but it’s quite possible their hair is the result of the same genetic condition that affects my daughter. Albinism is rare—occurring in 1 in 20,000 to 40,000 depending on the type—but it could be connected.
It was an interesting thought, but mostly I wondered, Couldn’t this just be a haircut? Why do so many of our interactions need to be a science lesson? Most importantly, How was my daughter interpreting this interaction about her appearance?
When Sadie was younger strangers’ comments sometimes wounded me but I didn’t need to worry about how they affected the tiny white-haired infant asleep in my arms. People asked me if I dyed my baby’s hair (um, no), or if her hair was white (yes), or if her father had very light hair (nope). Occasionally I took the opportunity to educate the inquirer on recessive genetics but mostly I politely answered the bare minimum and went on with my day.
Now, the comments and questions are often pointed in my daughter’s direction. It is not her role, at three, to educate the overly curious masses. Mostly these are compliments on her hair, and on the little pink-framed eyeglasses she wears to correct what she can of her vision. I encourage her to say thank you because it’s polite, but sometimes I wonder if doing so feeds into an idea of otherness that I don’t want her to grow up with. These people, however kind and well-intentioned their comments might be, are singling her out as different—over and over.
It is not an exaggeration to say that Sadie and I field questions and address observations every day. Aware that my daughter is listening, I respond with confidence and warmth, but I’ve also walked away or ignored people—especially when they speak loudly about my daughter but not to her or to me.
As a parent I am still navigating uncharted territory. What I know for certain is that how I respond sets the tone for how Sadie feels about these encounters. I can’t stop them from happening but I can mitigate their impact on my daughter. At least for as long as she’s by my side, and when she’s not, she can follow my example.
For my part, I can learn from other parents of kids with albinism as well as people who share my daughter’s genetic condition. Since Sadie was one-and-a-half we’ve attended two National Organization of Albinism and Hypopigmentation conferences. It was a relief to connect with other families like us and to vent about some of our common frustrations. Everyone there had faced remarks about their or their child’s appearance. There was an entire session on how to navigate these tricky social experiences.
This presentation made me feel less alone and offered some excellent tips, like having a short, rehearsed story at the ready for difficult occasions. But it was another mom who shared the most surprising piece of information. She said her eight-year-old daughter loves having albinism because of the compliments she gets on her hair and glasses. The barrage of unsolicited comments has actually worked to boost her confidence. I had never considered this possibility.
Leave it to an unjaded child to rearrange how you see the world. What I’d seen as intrusions, this little girl viewed as self-affirmations. She taught me that how you receive comments are as important as how you react to them. If you perceive these words as arrows they will wound you and leave visible scars. If you receive them as gifts, they have the ability to enrich your life.
Not that every interaction involves a compliment. Like the farmer in the hair salon, many people simply state their observations. But I have a way of turning these situations around.
“Her hair is really white,” the cashier/mom-at-the-park/stranger-on-the-street/fill-in-the-blank will say.
“I know,” I’ll respond, remembering the little girl from the conference. “Isn’t it beautiful?”
Emily Urquhart is a folklorist and writer. Her book about genetics, parenting and storytelling, Beyond the Pale: Folklore, Family and the Mystery of our Hidden Genes, will be available in March 2015 from HarperCollins.
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4 comments:
I know its hard to front all those comments and questions, but i think you should accept it and take it as usual, bc that is what your doughter is gonna experiment in her life. She has to accept herself, i think. Kind regards from an albino teenager in spain :D
She is adorable! Thank you for sharing, it is so hard to know what to say, it is nice to read different perspectives on what people do and don't like to hear.
You must grow very weary answering and fielding the same questions over and over. It must also be very annoying when people talk about Sadie as if she isn't even there! I'm sure it will help if you respond to negative comments with positive answers. It sounds like you are doing a great job of that!
I so feel this. My son is now 9 and is missing a foot, some fingers on one hand, and below elbow on other. We get questions every hour at best. We go to the same food store every week, sometimes 2x a week and get no less then 135 comments every time (questions and remarks only not counting pointing or picture taking). I'm a statistician: I keep track. Used to make me mad now we joke about it. Sad part is he often feels responsible for the kids who scream and cry in terror: over a missing arm! I often wonder if these children would faint to see his friend who was in a crib fire. Keep up the great job you are doing!
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