A letter to my younger self
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.
Image description: Right-side view of a Chinese American woman in a power wheelchair at sunset.
A letter to my younger self
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.
It’s okay to mourn the death of the life you thought you were going to live. And it’s okay to grieve each time your body gets weaker. But even though you can’t lift your arms, anything you want to be—artist, model, even “syentest”—is still within your reach. You will get to live so much life, so many lives, one for every muscle you lose.
On your 25th birthday, about a decade after you start using a wheelchair, your wonderful mother will write of you, “A barrier is merely the scaffolding upon which she crafts her visions and accomplishes her goals.” Constraints increase creativity. Disability drives innovation. Do you see the truth now? Your disabilities are how humankind evolves not just its biology but its civilizations. You lament that you were born into a world not built for you. Of course it wasn’t built for you. It has never met you. Show it what it owes you and your people. Continue the scaffolding raised by your Disabled ancestors and construct a world for all those seen as blemishes and burdens and broken things.
Seek out other Disabled people, older and younger, with muscular dystrophy and without. Overcome your internalized ableism. Go to MDA Summer Camp and actually talk with the campers, not just the abled counselors. Go to Youth Leadership Forum to find out, for the first time, how it feels to be the majority in the room. Go to Crip Camp’s virtual summer camp and realize that Disability is not only about rights, but about culture—that our movement is made not only of words, but of songs. Get used to calling yourself disabled. Get used to calling yourself Disabled and proud. Find the Disability community, and let us all angle our mirrors to merge the light of one billion suns. At the end of a livestream, one of these suns will say to you—in case you have not heard it from anyone else—“You are perfect.”
You think you want to be normal. What you really want is to be loved.
To a younger me, and to any disabled child of this world: You are beautiful, you are powerful, you are perfect. I’m telling you this now in case no one else has.
When you’re ready, we will create the future together.
With the love you’ve always deserved,