I am writing to you from the future, fifteen years after your diagnosis. When you were first diagnosed with Charcot-Marie-Tooth disease, a form of muscular dystrophy, no one in your family knew how to react. While you finally had an explanation for your delayed milestones, foot drop, and limb weakness, you were left with more questions than answers: would you ever be able to go to school, or make friends, or live a “normal” life? Spoiler alert: although your life may not always be normal, it will be more rewarding than you ever imagined.
Fortunately, you’ll never feel insecure about being disabled. With a family that taught you to stand up for yourself and friends that treated you as just like anyone else, you’ll grow up thinking of your disability as simply a part of your identity, no different from being Asian or, as your mother constantly reminded you, being a chatterbox. Instead of letting your disability bring you down, you’ll always have a smile on your face and a witty remark for anyone who asks, “what’s wrong with you?” You’ll think of your life as just like your classmates, and, for the most part, it will be. From building towers with woodchips on the playground, to singing along to Disney songs, to obsessing over the latest teen novels, other than your wheelchair, you will try to be as normal as possible.
Of course, it will be difficult not to recognize the barriers that you’ll face because of your disability. In your weekly trips to the library, as you immerse yourself in the universe of princesses and fairytales, you’ll wish that you could read about a main character who was disabled or used a wheelchair, like you. When your family visits the Grand Canyon, your sister will have to carry you miles, up hills and cliffs, until her own legs ache. When people look at you, they will see your wheelchair first, your shaky hands second, and finally, if at all, will they see you. That’s why, at the age of ten years old, you will decide that you want to become a disability activist — to advance the rights of people like you.
Still, you will never feel limited by your disability — until you do. Every year, you will lose abilities that you used to have, as is the nature of your condition. Each time your body weakens, you will grieve the life that you could have had, but you will ignore it as much as you can. Then, at seventeen years old, a simple case of the flu will put you in the ICU for respiratory failure, and the normalcy that you’ve become so used to will be ripped from you. You have always known that your condition would worsen over time, but for the first time, it will feel like your life had become a battle between your mind, strong as ever, and your body, weakening from forces that are beyond your control. “If my disability will always hold me back,” you will think, “then what can I do with my life?”
Soon after, you will discover a documentary about Claire Wineland, a disability activist with cystic fibrosis who made many life affirming videos before she passed away. Wineland’s disease had a short life expectancy, but when people asked her whether she had a bucket list, she said no — rather than focusing on what she wanted to get from the world, she cared about what she could give.
You will realize that your disability might not be a weakness after all. Being disabled has taught you how much ableism is still ingrained in society, and you can use that knowledge to make change. For the first time, you will think of being a disability activist not just as your passion, but as your purpose, and your world will widen. You will advocate with organizations such as the Boston Center for Independent Living and learn valuable skills like networking and lobbying. You will write for outlets like Cripple Media and, for the first time, befriend disabled youth like yourself. You will find disability activists from every field, like Alice Wong and Ali Stroker, and realize that disabled people can do anything.
As your health declines, “normal” will become nothing but a faint memory. With that, though, you will gain an acceptance and pride of your disabled body that is decidedly more powerful. Muscular dystrophy will always limit what you’re able to get from the world — but it can never put a limit on what you are able to give.
And with a community of disabled people like you, you will pave the way to a better, more inclusive world.