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I woke up, like most mornings on break, to the sound of my 10-year-old sister Melissa chirping at me. Unmindful of my college student schedule of going to bed at 3 and waking up at 11, she presumed every morning at 9 was an acceptable time to start a conversation with me about one of her favorite topics: American Girl dolls.
“The new Girl of the Year is out,” she announced, peering over the foot of my bed. I rubbed my eyes groggily, “The new what?” “Her name is Isabelle. She’s not out yet officially, but people posted pictures of her already. She’s a dancer,” my sister said. Disappointment tinged her voice on the last sentence, and I sat up to listen. “Hmm," I said. "Is that a problem?” Melissa climbed onto my bed, taking a seat next to me, showing me the iPad she was holding. “Nothing. It’s just that we’ve had two dancers already.” I propped my head up on my elbow. “What kind of Girl of the Year do you think it should be?” Melissa considered, before announcing playfully, “I think there should be a girl with a disability.” That was the early morning conversation that began my 10-year-old sister's now viral campaign for American Girl to announce a disabled girl as “Girl of the Year” for 2015. With now more than 100,000 signatures gathered, our petition was later featured in national and local media outlets ranging from USA Today to the Philadelphia Inquirer. The feedback was overwhelmingly positive, with an outpouring of empathy especially in the comments of our petition. Signers related their stories of suffering from disabilities or having disabled family members and many cheered on Melissa’s efforts.
As an older sister, the joy in being able to help Melissa raise her voice for change was the most rewarding part of this experience so far.
I was 10 years old when Melissa was diagnosed with severe Charcot-Marie-Tooth, a neuromuscular disease slightly separate from muscular dystrophy but still covered under the umbrella of the Muscular Dystrophy Association.
Charcot-Marie-Tooth is progressive, and currently has no cure. That was seven years ago, and at the time, I helped my mother send the email scheduling her first doctor’s appointment at the Children’s Hospital of Philadelphia.
Because my parents are immigrants, still struggling with the language barrier, I’ve always taken on a more protective and parental role for my sister than other kids my age. My mother, stressed from work, delegated me the responsibility of writing to the neuromuscular doctor at the hospital, a specialist by the name of Dr. Finkel. The year after that, Melissa started kindergarten. My eighth grade self was the one who taught her to read, sounding out every word phonetically and helping her piece together the letters in the easy-reader guides her class sent home every weekend. From speaking very little English to winning a spelling bee in second grade to devouring American Girl books now, Melissa has come so far, and every day I am so proud to call her my sister.Later, as we grew older, I was always the one who picked up Melissa from the bus stop after school. Always the last one waiting on the street corner, every school day, I would watch Melissa descend slowly from the school bus, holding on to the railing carefully. She would extend her hand to meet mine as I helped her off the last step.
As we walked home, she buzzed enthusiastically, in her high soprano voice, about her chorus class or the excessive homework her teachers assigned or sometimes, sadder stories about how girls on the playground would exclude her. She would remind me to pick out her outfit for Spirit Day on Thursday. I would remind her not to dilly-dally when she does her physical therapy. She would grumble. But I do what sisters do -- just being there to support her, in any way I can, with tokens of affection small and hopefully someday, something large. Still, many days, all I feel is helpless to be there as a protective older sister in the ways that I wish I could.This past fall, I departed for college, and Melissa takes a handicapped bus to school now, one that stops right in front of the house. Sometimes, she calls me about starting fifth grade and facing new, harder challenges that for the first time, I can’t work with her through.
She uses a wheelchair more this year, and still rues not being able to attend the class field trip to the farm. CMT is progressive, and her muscles will continue to deteriorate over the course of her lifetime. But Melissa keeps trying her best. And as her sister, I’m always looking for the next way I can help her through the many obstacles she faces every day. So when Melissa expressed wistfully that morning her disappointment at yet another American Girl whose story differed so drastically from hers, I decided that if anything, I could try help her with this: to be a force for change and to help her signal a call to action. As a youth activist, I had worked previously on campaigns and petitions on subjects ranging from Photoshopping in magazines to girls in developing countries to economic opportunity. Finally, there was an opportunity to use my skills to help my sister.
After hanging out together under the covers and watching some music videos from "Frozen" that morning, I assigned Melissa the task of drafting what she wanted to be included in the petition. Together, we wrote the script and filmed the video for the petition in our living room in front of the Christmas tree. When it came time to put the petition up, I called across the room, “How many signatures should we try for?” Melissa considered, “Twenty?” I chuckled, “How bout 5,000? Better to set it high.” Melissa dropped her book, exclaiming, “Are you crazy? That’s WAY too many.” I shrugged and did it anyway. As of today, we have almost 100,000 signatures.
Cynical commenters on the Internet have expressed doubt that a 10-year-old could have thought to create this petition on her own. Some jumped immediately to the conclusion that there were adults exploiting the little girl for the sake of 15 minutes of fame. Our parents found out about the petition a couple of days after it was posted. The real forces behind the petition are exactly who they appear to be: a pair of sisters, hoping to see the story of disabled girls told. While American Girl currently offers a wheelchair and while McKenna, 2012 Girl of the Year, had a tutor who was disabled, there are no stories currently told through the eyes of a disabled girl who has faced anything even similar to the challenges that Melissa faces. Because American Girl matters so much to my sister, this issue also matters to me. Over the course of the past few days, Melissa’s petition has gained traction with media and with individuals -- reflecting what I see as a broad desire for disability representation in children’s toys. Melissa’s story is not unique -- according to the 2010 Census, nearly 1 in 5 Americans suffers from some sort of disability. What Melissa is asking for is not just a wheelchair for a doll, or a doll that looks like her, but for the story of disabled girls and the challenges they face every day to be told, and for other girls to learn what it’s like to be her. We see the best channel to reflect modern disabled girls (and Melissa’s favorite channel) as American Girl. We won’t know until next January if her petition succeeded. We can only hope. As her sister, I can only do what sisters do -- everything in my power to make at least one of her dreams come true. You can still sign our petition at Change.org!