What Reactions to My Family’s Physical Differences Inspired Me to Do

“You look like a monster!” Sure, our family has been the subject of stares, pointing and whispers by strangers, and certainly in my lifetime I had heard it all, but this was the first time something that harsh was directed to my child. 

Our oldest son, Ethan, had come for a swimming lesson at our local YMCA. We had signed up for a beginner “Guppie” class with three other families we’d never met. The room was damp and humid with nothing more than a few bleachers for parents surrounding the pool. The outburst came from a 5-year-old boy who blurted out those hurtful words while pointing to Ethan.

The odd thing about the encounter was that Ethan and this boy had been laughing together moments earlier at the sight of a girl who had worn her goggles upside down. But then, when it was time to start the lesson, Ethan began to lower his body into the pool and the other boy noticed his one-fingered hands and two-toed feet. The unexpected outburst left Ethan feeling like a freak. He began to cry and got out of the pool to come find me. He’d had enough of the lesson before it even began.

I looked over at the other child and stared intently at his face. He was still staring at our son’s hands and feet. Did he even appreciate the impact of his words on Ethan? If anything, the boy appeared oblivious to my look and just continued his focus on Ethan, even making sure to point him out to the other Guppy kids. Meanwhile, his mother was sitting on the bleachers nearby on her cell phone, completely distracted. At that moment, my Mama Bear instinct took over and all I wanted to do was scoop up Ethan into my arms and dash out of there. Realistically, though, I knew I needed to help our son navigate through — and past — these difficult encounters. There would be no easy escape from our reality.

Ethan and his younger brother, Charlie, both share my condition, which is called, “ectrodactyly.” It sounds like a pretty complicated medical term, but all it really means is “missing digits.” And we sure are missing them. Between the three of us, we only have eight fingers and 10 toes in total.

Yet despite our unusual appearance, we rarely think about our physical difference. I live my own life in a pretty normal fashion. I am happily married with three children. I have a career as an attorney at a large financial institution in New York. Now 13, Ethan excels in school and at basketball and soccer, while Charlie is an ambitious pianist and artist who also loves playing baseball in Little League.

And so, unless someone reminds us of our difference (which does occur, inevitably), we live our lives functioning within our own definition of normal, capable of doing everything within our means.

Thankfully, the truly cruel verbal assaults like the one at the YMCA years ago are quite rare. Most of the time, people’s comments come merely from curiosity. We understand that. After all, we clearly stand out in a crowd. In fact, we prefer it if a person directly asks us why we look so different. In that moment we can explain ourselves (i.e., we were born this way) and then move on to something more interesting. We like to dispel the mystery and become just a regular person in the eyes of the curious.

As a result of my family’s personal story and the many, sometimes difficult, encounters we have had with people who just didn’t know how to react to our difference, I was inspired six years ago to create a forum to talk and think about this challenge. Beginning with a website called “Don’t Hide It, Flaunt It,” we have grown into a 501(c)(3) charitable organization working to advance understanding, tolerance and mutual respect for people’s differences.

At first I prioritized sharing my life in a personal blog on the site. But then, I realized how much richer the experience and lessons could be if I invited others to share their stories. I knew everyone has something about them, whether blatant or invisible, that makes them unique. And so, inspired by the theme “The Things That Make Me Different Make Me, Me,” I encouraged several schools to have their students participate in a “Kids Flaunt” writing program. Students were encouraged to write about anything that made them unique, such as being short, wearing glasses or having an accent. They would recognize their differences and, hopefully, choose to flaunt rather than hide them.

Through that effort, I learned something enlightening. When asked to participate, certain students proudly claimed to their teachers, “But I have nothing to write about. I am not different!” To those kids, fitting in was the goal and standing out or being different was undesirable. This little epiphany gave me insight into the views of children, like the one at the YMCA, who could be so insensitive to another, seemingly different, child. The capacity for cruelty came, at least in part, from children not realizing they also carry differences for which they wouldn’t want to be criticized or singled out. They just haven’t been in touch with those traits. And just as significantly, they haven’t yet learned how to take something that seems negative and spin it to a positive. In short, I needed to find a way to help introduce the concept of empathy in our schools.

Fortunately, these days Ethan no longer is affected by how others react to his physical difference. He is self-assured and confident and continues to set an incredible example for Charlie. This progress took time, patience, maturity and unconditional love on our part. While that’s great for our kids, what about everyone else? 

Well, we’ve got big plans. Starting in September and running through October 30, 2015, the “Kids Flaunt” concept is taking flight. Through a partnership with Scholastic, the “Kids Flaunt” essay-writing program and contest will be introduced to all 4th grade classes in public and private schools in New York and California. Our goal is nothing less than to help millions of kids discover their own differences, learn to accept and be proud of them, and in doing so develop empathy and tolerance for the differences they see in others.  We hope and expect that “Kids Flaunt” will soon reach every school system in every state. 

But until then, my boys and I will continue to make a difference in our own small way. We’ll play sports, join clubs, seek leadership positions, flaunt at every turn and teach by example.  We’re not Guppies anymore.

See here for more details about the Kids Flaunt contest here.