When, at three years old, I was first diagnosed with Charcot-Marie-Tooth disease, a form of muscular dystrophy, no one in my family knew how to react. While I finally had an explanation for the limp in my step and the milestones that I never met, I was left with more questions than answers: could I ever go to school or live a “normal” life? Now, fifteen years later, I can confidently say that while my life isn’t exactly “normal,” it has been beyond my wildest dreams.
I have always grown up seeing my disability as just a part of my identity, no different from being Asian or being overly optimistic. Since childhood, I’ve gone from using leg braces, to a walker, to a motor wheelchair. For the most part, though, my life was like that of all my classmates. In elementary school, my friends and I built towers with wood chips on the playground and sang along to Disney songs. In middle school, we obsessed over the latest teen novels. In high school, we complained about homework and college applications. Other than my wheelchair, I tried to be as normal as possible.
Still, it was difficult not to recognize the barriers that I faced because of my disability. In my weekly trips to the library, I never read about a main character who was disabled or used a wheelchair, like me. Strangers often came up to me on the streets to ask me “what’s wrong with you?” as if they had a right to know. When people looked at me, they saw my wheelchair first, my shaky hands second, and finally, if at all, did they see me. Then, at ten years old, I discovered activism for the first time, and my life changed.
When my sister and I first petitioned the doll company American Girl for a doll with a disability, I had only one goal: to champion disability representation in my favorite doll company. Like most of my friends, I started collecting American Girl dolls when I was just seven years old. I’d read all the books and seen all the movies. What I loved most about these dolls were the stories that they came with; every year, American Girl released a new doll facing one of today’s challenges and conquering them. Through them, I learned what it’s like to be a lot of things that I’d never personally experienced, such as being a baker, a gymnast, or an artist. However, in 2014, when the newest American Girl doll was yet another blonde dancer, I’d had enough. I’d gone years without ever seeing myself in toys or the media, and I wanted to change that.
Initially, my sister decided to aim for 2,000 signatures on the petition, but I thought she was crazy. There’s no way we could ever get that many, I thought. What I never could have guessed was that my petition would gain over 144,000 signatures and coverage in major news outlets like People, CBS, and Oprah Magazine, but it miraculously did. What struck me most, though, were the comments that I received from so many people saying their friend, neighbor, daughter, son, had a disability. For the first time in my life, I felt like I wasn’t alone.
From then on, I started to reject normalcy in favor of disability pride. My disability taught me how much ableism is still ingrained in society, but it also taught me that I could be part of the change. By speaking out about disability justice, I was contributing to a world where a child with a disability can watch a movie and see themselves as a main character, go to school and have access to the same education, and truly be just like anyone else — the very world that I wish I’d had. Activism also led me to the disability community, a community of people who, just like me, fought tirelessly against a world that wasn’t made for them. They taught me that in a society where people told me that my disability was a weakness, my greatest act of rebellion would be to see it as a strength.
Through being an activist, I was able to do things I never would have dreamed of, from speaking at the United Nations to writing for Teen Vogue, and I discovered disabled people from every field, like Ali Stroker and Rebecca Cokely. Activism taught me the greatest lesson that I could ever know: that disabled people are unstoppable. Every time I become discouraged, I remind myself of that.
Melissa Shang is a Bank of America Student Leader at Mass Mentoring Partnership.