By Aubrie Lee: For Entire Post, Go Here…
About the author: Aubrie Lee is an artist with an engineering degree from Stanford University. She enjoys riddles, holographic foil, and jackets with inside pockets. You can follow her on Twitter and find more of her work at aubrielee.com.
To a younger me,
I’m writing you the letter I wish I had gotten when I was diagnosed. “Infantile-onset facioscapulohumeral muscular dystrophy” gives you a name for why you’ve never been able to smile, why you get more tired than other kids, and why you can’t lift your arms above your head anymore. The diagnosis will also improve your spelling (I found the journal you left for me about wanting to become a “syentest”).
About those other kids, you don’t have to be shy like I was. When they ask you why your lips stick out, take the opportunity to make a new friend. You’re self-conscious now, but people pay money for shots to make their lips look like yours (I’m not sure how much money, but it’s more than you’ve ever gotten in a hong bao). And one day, when your muscles have weakened to the point where kids are asking you why you walk “different”, a stranger will go out of his way to respectfully tell you, “You’re very beautiful.” You won’t know what to say. As he walks away, you’ll realize that his back is disfigured, and you’ll wish you could thank him all these years later.
When people hurt you, you will call yourself a mirror that reveals their true character. But that’s not the mirror that matters. Hold yourself up to other Disabled people. See their beauty. See your beauty in them, and let them see theirs in you. You’ve always been proud of your mind, but you think of it as your body’s redemption. Be proud of your body. No one can cure muscular dystrophy. But no one can choose it, either. The perspectives you’ll get to behold, the beauty you’ll get to embody, people cannot even pay for, though they may try.
Question whether people’s lessons are lies. They can’t tell the difference.
- “Survival of the fittest.” Genetic mutations like yours aren’t an exception to evolution; they are its mechanism. But biology doesn’t determine your worth anyway. Forget Darwin. You have the same rights as all humans do. You deserve to live and to create life.
- “According to Maslow’s hierarchy of needs.” Maslow wrote that “the study of crippled … and unhealthy specimens can yield only a cripple psychology and a cripple philosophy.” His hierarchy was not meant for you; it was meant to erase you. Forget Maslow. Raze his pyramid to the ground and build your shining cripple philosophy on its ruins.
- “Focus on what you can do, not what you can’t do.” Ability is not the goal. Autonomy is. Focus on what you want to do, and if you can’t do it, fix whatever systems stand in your way. It’s wrong that you should have to be the one to fight the ableism that holds you back, but as with every wrong, use it as fuel for a sun’s worth of fire.
Free yourself from the curse they call a cure. Don’t believe them—there’s nothing wrong with you.
You’re not a blemish.
You’re not a burden.
You’re not a broken thing.
I should have told you this sooner, and I’m sorry.
