By Meg Zucker
It took me decades to realize why the word ‘disabled’ can sometimes make my skin crawl. I was rushing around one morning, engaged in the working mom juggle of getting into my suit while simultaneously feeding and preparing three kids for school. As usual, I had the local news playing in the background for tips on the forecast (is it a raincoat day?) and traffic (will my commute suck?). “This just in, an accident with disabled vehicles is causing massive delays on Route 78. This is a bad one.”
To the shock of both my parents, I was the only child in our family born with one finger on each hand, shortened forearms and one toe on each foot. Whether I would be able to walk, run, write or function independently was, at best, up in the air. I wouldn’t learn that my physical difference was a genetic condition called ectrodactyly until much later in my life. When a doctor finally, casually wrote down the word for me, it just sounded like a type of dinosaur. I still didn’t really understand it.
Resisting the desire to treat me any differently than my older and younger brother, my parents were intuitive geniuses. As they held back their impulse to overprotect, I willfully plunged forward. Not only would I walk and write, I would learn to bike, play tennis, basketball and type. I would even play the trombone and become a cheerleader in high school. I was raised to thrive under seemingly unfortunate circumstances and to believe that my differences didn’t have to limit or set me apart.
But the world disagreed.
Growing up, the questions were repetitive yet inevitable. “Why do you have only one finger?” As a very young child, I had just as many questions as my friends. One evening while taking a bath I looked up at my father. “Okay, Daddy. Now I understand why I only have one finger, but why do I only have one toe?” When it was time for elementary school, other kids would continue to question me and I would turn to my parents. Drawing from their guidance, I’d reply using the same tone as if the kids had asked me what time it was. “Because I was born this way,” I would reply. “You know, like how you have blue eyes…?” It was the perfect imperfect response.
Despite my efforts, though, the questions would continue. Somehow, regardless of age, my difference seemed to make people think they had carte blanche to blurt out whatever was on their mind.
In actuality, though, I much preferred the questions from strangers to the invariable alternative—the stares. The whispers. The pointing. Most kids I met had the chance to just be themselves and go through life unnoticed, if they wished. Wearing my difference on my sleeve meant being on guard for an unwelcome encounter at any moment. Though I was utterly comfortable at home and naturally social with my friends from the outset, it was the transition to my teens that led to greater self-consciousness. In public, I would stuff my unusual hands into my pant pockets or under long sleeves or jackets. For years I would make certain that in any photo, I had my hands tucked behind my back or otherwise hidden. I’d actually enjoy picking up the prints from our local drug store just to see pictures of myself, seemingly perfect.
I suppose when the doctor labeled me with a dinosaur-sounding name, I could’ve asked if it was genetic. But at the time I wasn’t ready to explore what would one day become my deepest fear—having a child who shared my condition. I was completely and purposefully naïve, believing that my difference would start and end with me. After all, no one in my own family shared it. Not even distant relatives. When my husband John and I began to plan for a family, my darkest fears were realized during a pre-pregnancy genetic test. It turned out that in fact, my chances were 50-50 of passing ectrodactyly on. Utterly devastated, I now doubted my life’s dream of becoming a mother; I became preoccupied with the thought that if it happened, he or she would blame me for life, that it would be all my fault.
Our son Ethan was born on the summer solstice, almost the mirror image of me, at least with respect to my limb difference. While at the hospital, holding him all swaddled up with only his sweet face showing, my old-self longed for us to keep him that way. “Take a picture of me with Ethan,” I asked my husband. Channeling my past insecurities, I was prepared to have my own hands hidden behind our infant and his covered inside the blanket. Then, both of our parents arrived to meet their new grandson. Without hesitation, John pulled Ethan up to show him off. The small blanket fell to the floor leaving Ethan wearing only a tiny hat given to us by the hospital and his diaper. “Here he is!” John beamed proudly.
After we were home and would stroll our baby around in the heat of the summer, something seismic occurred. When people began to stare at Ethan, I resisted any innate impulse to hide his body, or my own for that matter. While it was inevitable that having a child that shared my condition meant a new chapter of whispers, pointing and stares now also directed at my own child, I hadn’t realized the significance of parenthood in my life. By loving our son unconditionally, I would finally learn to feel the same way about myself. John and I would have three children in total. Our second child, Charlie, would share my condition with his brother.
Ethan is now in High School, Charlie in Middle School and our daughter, Savanna, in her last year of elementary. With me as their role model, John and I have been raising all three of our children to accept themselves, despite their visible and even invisible differences. To my delight it doesn’t occur to them to hide their hands in public or in photos. And because she has older brothers that look different, our daughter Savanna is fiercely protective and proud of them. She counters other kids’ stares by huddling even closer.
According to Merriam-Webster, the definition of disabled is: “Impaired or limited by a physical, mental, cognitive, or developmental condition.” We were all born with our difference and never felt physically restricted, and because of that my boys and I have never in fact considered ourselves to be disabled. It is simply our own version of normal.
I have discovered that there are many other people who share my perspective, although it is usually those who either were born with their own visible, or invisible, differences or are parenting children within that spectrum. And yet, I have also noticed that veterans who have lost limbs or people who have become disfigured as a result of an accident are less likely to cringe at the term disabled. Perhaps because now they feel impaired and limited compared to before.
I bristle at the word disabled in this context the same way I did in the traffic report, because it is used interchangeably with something broken down. And, the negative connotation reverberates.
Recently Ethan and I were walking together in public and I aired my frustration about how the word disabled can be misapplied. Grabbing my one finger in his own, Ethan said, “You’ve always told me that superficial people were never interested in getting to know you. Instead, you always attracted the most genuine people. Our difference is a gift.” He was right. Being different and comfortable in our own skin has allowed us to surround ourselves with the most wonderful people. And even better, it is a gift that keeps on giving.
Meg Zucker is an attorney and also President and founder of Don’t Hide It Flaunt It (www.donthideitflauntit.com), a 501(c)(3) non-profit that provides programming in schools through corporate partnerships. DHIFI’s mission is to advance understanding, tolerance and mutual respect for people’s differences.