“But will she be able to write?” I was only a few hours old, and father was outside in the hallway with the physician who had just delivered me. My arrival was without question a shock to my parents. And, while the medical staff had certainly seen their share of “it all” in the labor and delivery room, none had seen a baby with one finger on each hand, one toe on each foot, and shortened forearms.
“I’m sorry Mr. Weinbaum. We are simply not certain what she’ll be capable of doing. Perhaps in time you’ll look into getting her prosthetics since she may very well need that type of assistance to function at home and in school.”
“How do you write?” I looked over at the boy sitting next to me in Mrs. Amdor’s 1st grade class at Yankee Ridge elementary school in Urbana. Only six years old, I had already lived in four different countries in the Middle East and South Asia, and had already experienced what felt like a lifetime of stares and questions.
But actually, this was the first time we were being asked to write between the large lines pre-ruled on the paper. It was only a matter of time before someone would question my abilities in yet another arena in life. “I dunno, I guess the same way you do…..” I felt good temporarily, hoping the response would satisfy, but it clearly didn’t. He pressed, “No really, Meggie. How can you hold a pencil with only one finger?”
“How do you write? And drive? You’ll need to include that level of detail in any memoir if that is what you decide to write.” I was about to sign with my literary agent Lisa Leshne and the head of the agency she had previously worked at run by Larry Kirshbaum swung in to meet me. Larry’s question took me aback. How was it possible that someone like him needed to understand that? I left the meeting grateful to have signed with a great agency, but resentful I was asked questions that seemed so basic and obvious.
“Mrs. Zucker, how do you write?” The question was posed for the second time by a middle school student, even after I had already provided my original (and clearly inadequate) response moments beforehand to another 6th grader.
The scene was Gaudineer, a New Jersey middle school where I recently had the privilege of being asked to speak by the school’s PTA Program Chair to an assembly of 6th, 7th and 8th graders. However, the school gym wasn’t large enough to hold the entire student body so I repeated my presentation to each grade, separately. I was given discretion to choose my own topic and decided my goal was to help guide students to recognize difference in themselves and thereby learn to accept themselves and one another. As I’ve spoken and written on this theme, I’ve found the message resonates and hits home for this age group. In recognizing one’s own unique invisible or visible differences, people (and especially kids) understand that we’re all different in some ways and there is no actual “normal”. The effect is to encourage kids to accept themselves and feel greater empathy for each other.
That same morning I woke up early, deciding to put together a power point deck to accompany my speech. Although I often joke that when you have a speaker who looks like me, supplemental visuals are not necessary, it occurred to me that the talk would be more interesting if students could stare at something else besides me. Included in the presentation were pictures of me during my childhood, as well as of Ethan and Charlie, our sons who share my genetic condition. I also decided to share a photo of a 7-year-old named Anaya Ellick who was born with no hands and had won a national penmanship contest the prior week. Using Anaya as my example, I wanted the middle school students to appreciate that my biggest challenges in life were actually not physical, but mental. In needed to overcome the handicap of worrying about how people would judge me because of my blatant physical difference. The article I read about Anaya’s fierce ‘never say never’ attitude reminded me of myself, back when people couldn’t fathom how I’d be able to write or function physically.
From that point on, I purposefully moved the discussion away from myself and my or my children’s abilities and instead tried to reinforce the notion that we all have our own version of one finger on each hand and it is up to us to accept ourselves and one another unconditionally.“What You Think of Me is None of My Business!” I exclaimed loudly. Using my favorite motto, I wanted them to understand they could never control how others may be judging them so it was best to let go and even not care. I subsequently focused on the work Don’t Hide It, Flaunt It has been achieving with Scholastic in the schools, including the 4th grade “Kids Flaunt” contest and the “RBC Flaunt It Award.” I shared the reasons we picked our two winners of the latter contest, mentioning that we’d picked Sydney Maddox who had been judged for her gender and Peyton Vasquez who gave a voice to children who had endured a life-threatening illness.
Opening the discussion for questions, I hoped to hear from students that might be interested in participating in next year’s RBC Flaunt It Awards. Or perhaps a student might express interest in the other projects I’ve been working on with DHIFI Inc.?
But instead, I was totally mistaken. Questioner after questioner was trying to understand how I managed physically in life. Beyond the usual inquiries about my writing abilities, the questions kept coming. “How do you drive?” and “How can you tie your shoes?” and “How do you play the trombone?” and so forth. Ironically, as prepared as I was to discuss the overarching and thematic goals of my organization, I was completely caught off guard by these routine questions. I responded trying to gather my thoughts. “Errr, I dunno! Great question!”
For a brief moment, my mind wandered to those occasions when my eldest, Ethan, has been asked how he manages things like playing basketball or tennis with only one finger on each hand. To me, his usual response not only makes sense but is ideal: “Just like you….with tons of practice.” But somehow I knew that would not satisfy in these circumstances.
And although questions about how I navigate my life physically are hardly new, the answer still never comes easily. I suppose it’s because the condition with which I was born, my difference, is simply is my version of normal. I really don’t know how to describe how I do things…..probably like anyone else, I just do them. Although I’ve certainly needed to be more creative than most to get the job done, it isn’t something I necessarily have captured in a mental playbook for inquiring minds. And given her own parents’ description of a girl with fierce determination to use what she’s been given rather than focus on what others might perceive as missing, I suspect that Anaya will feel the same way throughout her life, too.
And so, as I spoke three times in a row to each grade at the school, I took the time to carefully describe how I learned to tie my shoes, how I hold a pencil, even how I grab a steering wheel, as best I could. A certain irony occurred to me at that moment because it seemed harder for me to describe how I physically accomplished things than actually doing them.
Two weeks later as we head into the Memorial Day weekend, I’ve now accepted that middle schoolers are going to be more intrigued by the day-to-day life of someone that looks like me than the partnerships and educational projects of my non-profit organization. In that spirit, I’ve decided to borrow Ethan’s attitude about our abilities. Recently, after being asked once again how he could possibly write with only one finger, Ethan came home and said, “Mom, people are so incredibly amazed at all the basic stuff we do without trying……it’s like we’re X-Men, part of a subspecies with genes that give us super-human abilities!”
Superhero or not (okay, not…. but part of me believes Anaya is one!), I’m hopeful that by describing how I function with the basics when asked, students will move on and come to realize that most of the true challenges we all deal with are actually self-imposed.