Preface
June 1985
“Getting to know you, getting to know all about you. Getting to like you, getting to hope you like me….. Haven’t you noticed, suddenly I’m bright and breezy? Because of all the beautiful and new, things I’m learning about you. Day…by…day.”” I had been singing in front of Melvin Larimer, the man who would within a week become my conductor at Interlochen National Music Camp. There were also about five others staring at me, scrutinizing what I presumed was my voice and also my shortened forearms and hands. To be admitted in the first place at Interlochen, I had to send in an audition tape. For mine, I had happily belted out “One” from A Chorus Line in the privacy of my bedroom to an imaginary audience.
But this was different. I had never had to audition for anything before, unless you count trombone challenges from the high school band. But for those I was always surrounded by my older brother Peter and long-time friends. I continued, “…getting to know you, getting to feel free and easy….” Mr. Larimer put up his hand and gave me an unfamiliar song, with sheet music. “You can read treble, right?” I nodded, and proceeded to sing a classical Italian piece. As soon as I finished the first page, the now familiar hand was raised again. “Perfect….” I looked up at my future conductor, and inadvertently said aloud, “Huh?” I had never heard anyone in my life describe me in such a way. He looked at me with the warmest smile. “Why Meg, you have perfect pitch!” No one had ever said that to me before.
The next day I was surrounded by a crowd of teens in the main building, stretching my neck to see if my name was on the Mixed Choir list that had just been posted onto a bulletin board, instead of the All-Girls Choir. My eyes scrolled to the bottom of the list, knowing it would be in alphabetical order and my last name began with W. As my eyeballs scanned downward, I heard some girls shrieking with delight that they had made Interlochen’s elite Mixed Choir, while others were sobbing, having just discovered they had been placed in the second-tier group. And then I saw my name…..and slowly walked away without saying a word. I had made the Mixed Choir, and unlike the others who were jumping and lining up at the payphones to call their parents, I felt a flood of fixed emotions. While there was no doubt I was excited, I couldn’t help but wonder silently whether I had gotten into the Mixed Choir as a result of my physical difference. Did they include me because they felt sorry for me? Because they had never seen anyone that looked like me and thought having me in their premier choir would add an inspirational layer to every performance? Or did I make the cut simply based on my vocal ability? I wondered.
This week Charlie tried-out for his elementary school’s musical.When Charlie first mentioned to me that he was interested in trying out for the role of ‘Ryan’ in High School Musical, I was particularly tickled that he was interested in the one area that I had devoted so much of my time to while growing up. Savanna enjoys singing but she is too young to try out and, let’s just say that Ethan is far more interested in reading and playing basketball…..
Anyway, over the past weekend, I thought I could encourage Charlie by playing the High School Musical DVD and showing him Ryan in action. It all seemed like a good idea until we got to the scene when Ryan and his sister ‘Sharpe’ were about to perform. The scene began with the two siblings sticking their hands through the closed curtains, snapping in unison, to begin the beat of the song before they emerge. I tensed a bit, and looked over, wondering how Charlie might react. He actually seemed fine, but I waited.
When the pair finished their song,“What I’ve Been Looking For,” Charlie looked over at me and I waited in anticipation of where the conversation would go. Would he decide he couldn’t try out since his two-fingered hands aren’t exactly made for snapping? Or, would he become self-aware and therefore self-conscious, making up an excuse for why he really wasn’t up for auditioning for the role? In fact (and instead), our nine-year-old looked up and me and remarked sincerely, “Do you think they’ll mind if I wear my glasses since Ryan doesn’t wear them?” Not thinking the question deserved much of a response, I encouraged Charlie to grab my iPad at his leisure and pull up the You-Tube karaoke version of the song whenever he felt like it. A few days later, on what was supposed to be the day of Charlie’s audition, Charlie learned that because his name fell at the end of the Alphabet so his audition was delayed. Nonetheless he remained committed.
Later that evening, I noted an article, “Hollywood’s Disability ‘Inspiration Porn’ Is Terrible, But Here’s How We Can Fix It,” in an online site called, “Takepart.com.” I was instantly drawn to it given the
cover photo of Matt Fraser, an actor born with a genetic condition called, Phocomelia that causes, “malformed appendages.” I learned that Fraser stars in a television show I have never been interested in watching called, American Horror Story: Freak Show. Fraser was described as “fierce by any measure,” and that “he beautifully embodies his character” so I read on. I had never heard the term, “Inspiration Porn,” and wanted to understand what it meant. In the article, Fraser discussed how he had passed up two offers from “really mainstream people to do a life-story interview because I am not interested in ‘inspiration porn.’” Although the term may not be familiar, the concept is. “It’s that soft-focus prime-time sitdown about a heroic soldier who lost limbs in a battle. Or, the documentary about a person triumphing over a disfiguring disease to run a marathon or climb a mountain….in reality, it’s a clarion call to the able-bodied: If these less-thans can do so much with so little, by G-d, you can do anything!”
Although I hate to admit it, after reading that article, I couldn’t help but wonder, for a split second, whether Charlie would be handed the part not because it was deserved, but because having the two-fingered kid up there in front of his entire elementary school might be simply seen as inspirational. In reality, I know that probably sounds quite ridiculous, but if you walked in my shoes every day you’d understand. Just today I had someone draw my blood for an annual medical exam and it was clear that my very ability to bend my arm and tighten my hand to make a strong grip was deserving of praise. I decided to remain positive and tell her about my Don’t Hide It Flaunt It website and blog, that in fact it was I who was constantly inspired by the Kid, Teen and Guest flaunts of others.
I think at the end of the day, strangers are seemingly inspired to ‘make the most of it’ after comparing their lot in life to mine. However, anyone who really gets to know me will know that, unlike Matt Fraser, call it what you want, I actually don’t mind putting myself out there if it means that others might be inspired to do things they might not otherwise try, or be grateful for what they have, versus what they don’t. Yet when it comes to being able to achieve something I (or my children) want, my hope is that we get it, not because we inspire, but because we deserve it.
Postscript
At “press time,” we still don’t know if Charlie will get to play the role of ‘Ryan’ or not. To me, it really doesn’t matter, since I am just proud that he has already accepted the most important role of his life, that of himself.
