Only in 5th grade, I was already the same height as my father’s mother. “Meggie, come over here, bubeleh. Let me roll those up for you.” My grandma Dorothy (also known as the “little grandma”) was beckoning me, but I looked directly into her eyes and shrugged. Every summer my parents, two brothers and I would fly (or drive our old Plymouth Volare’ brown station wagon) from Urbana, Illinois to New York City to visit all of our relatives. Aunts, uncles, cousins and even my mother’s parents would cram into the little grandma’s one-bedroom apartment on East 54th street for an early dinner. Upon reflection, this type of get-together must have been pure paradise for my grandma, who had lived alone since my grandfather Edward, her husband, had died.
I always felt a tinge of excitement whenever we came to Manhattan. It’s not like I was being treated to fancy dinners or Broadway shows when we came. Instead, each year we would go straight to the little grandma’s apartment (we called it that even when Grandpa Eddie was alive), walk down the long red-carpeted hallway to the end of the corridor to Apartment 4D and ring the shiny black bell on her door. Invariably, one of my relatives would throw the door open and chime loudly, “Meggie, look how much you have grown” or “What a pretty girl you are. I love your long dark hair,” or “How is everything going in school? I heard you have been doing really well. Are you still singing?” I adored the positive attention. But then, inevitably, my little grandma would hug me and whip me back to (my) reality with: “Meggie, come here. Those sleeves are simply too long!” Then she would proceed to roll up my sleeves (uncomfortably, high enough until they were above my elbow). “Now, there, isn’t that better? Why are you wearing long sleeves in the summer anyway?” I ignored the question and faked a smile. Physically speaking, her effort was of help. Because of my genetic condition, aside from my single finger on each hand, my forearms were much shorter than that of any other ten-year –old (or for that matter, any five-year-old.) I always let her fix my sleeves, knowing that pushing back wasn’t worth the noise.
Then, as soon as the little grandma left the room, I would roll them down once again. While, ordinarily, I was quite comfortable with my physical difference among my relatives and people I knew well, there was one (3rd) cousin in particular I actually tried to avoid. Her name was Tracey and although she was as sweet and loving as anyone could ever hope for in a relative, she was mentally disabled as well as somewhat deaf. Whenever Tracey noticed my hands, the inevitable outburst would follow. “Oh! Why do you look like that?” or “What is wrong with your hands?” Everyone would try to go about their business, pretending they didn’t hear her…..well everyone except for me. The last thing I wanted was for my hands to be the focal point of any conversation, even amongst family. Looking back, I am quite ashamed of my own reaction to Tracey’s reaction to me. She had no filter, certainly no ill-intent,. For me, I loathed having the little grandma push up my sleeves, particularly when Tracey was there. Having long sleeves that covered my arms and hands—now that was my idea of the perfect outfit.
For those that may recall, I had the chance to appear on the morning show Today (NBC) a couple of years ago to talk about an article I had written and offer some advice on how to teach kids to deal with people who look different. At one point, I joked with the host that “I am all about fashion,” and told of how a conversation about fashion helped smooth me through an awkward moment with my kids and stranger. Fast forward to the present and you’ll understand how thrilled I am to be newly appointed as an Ambassador to Runway of Dreams (“RofD”), a not-for-profit organization dedicated to creating a fashionable adaptive clothing line for children and teens with differences and disabilities. RofD was developed by fashion designer Mindy Scheier, a recent Guest Flaunter who wrote a fantastic essay on my site,. Her amazing nine-year-old son, Oliver (born with a rare form of Muscular Dystrophy) also took the time to write a Kid Flaunt called, “You are who you are” for DHIFI as well. After having trouble finding jeans that fit over Oliver’s leg braces, Mindy started her mission to develop an affordable and appealing adaptive clothing line for people whose fashion needs are not met by customary online or in-person shopping.
Mindy’s mission led us to an incredible opportunity to meet with some important players in the fashion industry in New York City. At that first meeting, I was more than excited to sport my new Rag&Bone skirt with long black boots and a matching wrap sweater. As I sat in on this meeting between fashion powerhouses and a woman determined to earn their support for her worthy project, I thought of the irony of my involvement. While I surely could have used something like adaptive clothing growing up, in truth those overly long sleeves helped me to hide my physical difference—back then a good thing, at least to me. Come to think of it, if someone were to mention that RofD clothes were available when I was a child, I may have even resented them for mentioning it.
After our meeting at the fashion company, Mindy and I caught a cab across town to meet with Jillian Mercado at a West Side coffee house. For those of you unfamiliar with Jillian, let’s just say that the fact that Jillian was born with Muscular Dystrophy seems almost beside the point in her unbelievably successful life. At 26, Jillian is an accomplished fashion editor and blogger turned model who recently starred in Diesel’s “We Are Connected,” campaign, among others. As Jillian wheeled up in her chair to join us, I quickly noted she was the picture of grace and confidence. And, once Mindy described what RofD was about, it was clear that Jillian could personally relate to the importance of the Runway of Dreams mission to empower young people with clothing purposefully and thoughtfully adapted to their differences. “Oh my gosh! That would be so fantastic! How can I be of help?” Of course, Jillian authentically understood the importance of not only having clothes that fit, but also producing clothes that kids and teens would actually want to wear, regardless of any physical difference.
In that moment, as I sat captivated by Jillian with Mindy nearby, I realized something quite ironic. Fashion actually delayed my ability to flaunt, (allowing me to literally hide behind fabric). In that sense, I couldn’t help but think about the fact that I actually grew up “fashion backward.” Yet, for Jillian, fashion actually gave her a sense of purpose and even the opportunity to flaunt. As I began to think about it, unlike how I used clothing to help me hide, Runway of Dreams will allow our physically different youth to not only wear fitted clothing that are appealing, accessible and comfortable, but also transform their attitude about themselves, even empower them. During the meeting, Jillian graciously accepted Mindy’s offer also to be a Runway of Dreams Ambassador. I smiled outwardly, as I realized the significance of Jillian Mercado’s commitment to Mindy’s vision. Here was a woman that could not even stand, yet through her love of fashion and of self, she had already risen to every occasion. Jillian is simply the perfect Runway of Dreams icon.
As for me, two decades after the little grandma passed, one of my biggest regrets (besides my behavior with Tracey years ago) now is that I never got to show her my own personal version of what it means to be fashion forward: I always make sure to have sleeves that fit.
Mindy Scheier of Runway of Dreams is currently asking parents of children and/or teens with physical differences or disabilities to complete the following survey so she can ensure that the new RofD clothing line is catered directly to the needs of its consumers. Please complete this Runway of Dream questionnaire and help Mindy with her incredible project! We look forward to hearing from you.