To younger me,

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.

With love,

Melissa

To a Future Me,

When can we meet? I’ve been wanting to see you.

Do you remember the show we both saw when we were children? A documentary about a man in Southeast Asia who was born with a second body attached to his: part of a scalp at his stomach, maybe two additional arms and legs. When he consulted with doctors, they warned him that his one heart couldn’t support the extra body parts, and they offered surgery to remove them. But the man decided against it. “This is my brother,” he said. “We were born into this world together, and we will die together.” I remember seeing how carefully he combed his fingers through his brother’s hair.

That may be the first time I realized that pathologized bodies could be loved. That I could love my body even if no one else would. Do you still love yours?

I can’t find any record of this film now. I wonder if our story will be lost so easily.

Some people don’t mind if we’re lost. Some want us gone. Their assembly line to our people’s deaths has become not only strategic, but formulaic. You probably know it better than I do, but here’s what I’ve ascertained so far on their playbook “How to Kill a Cripple”:

  1. Conduct genetic testing on the fetus so its parents can abort it if it is a mutant.
  2. Make life miserable for it if born.
  3. Tell people how miserable its life is, so that if those people become parents, they can comply with step 1.
  4. Keep it at the bottom of every social hierarchy and last on any list.
  5. Repurpose its names as insults and as synonyms for “bad”, “wrong”, and “unwanted”.
  6. Limit its housing.
  7. Restrict its movement both inside and outside where it lives.
  8. Disqualify it from insurance.
  9. Invent reasons it does not meet the requirements for your job.
  10. Remove state support systems if hired.
  11. Segregate it into institutions where it will be more likely to contract illness and die.
  12. Outlaw its vaccination during pandemics, which are the perfect time to rid yourself of it. (You may, however, give vaccines to its caregivers, because those people are human beings.)
  13. Take away its ventilator if it comes to your hospital for treatment.
  14. Do not resuscitate it.
  15. Offer assisted suicide to it.

But their fatal strategy has a fatal flaw. The more they want me gone, the more I need to stay. When I have to wait thirteen months just to open a door, when I have to escalate a proposal just to use a bathroom, when I have to pass their hardest tests just to persuade them to look me in the eye, I cannot leave.

Of all my aches, the scars on my soul hurt the most. I’m not grateful enough, say people who have never had to pay someone else to move them off the toilet. I’m not calm enough, say people who have never been strapped like freight to a metal hand truck. I’m not patient enough, say people who have never had to fear getting killed by a doctor. How charitably they drip their hypocrisy down to me from the comfort of their individualism. They refuse me my rights, then blame me for not having them. I am heart-sick and dead-tired of fighting for respect.

How many times have you died by now?

The worst thing they want to do to me is kill me. Failing that, the worst thing they want to do to me is watch me kill myself. Failing that, the worst thing they want to do to me is make me spend my life fighting to keep it. They seek to make me so out of breath that I can’t speak. So I roar. I defy their “odd”—I model fashion, I model meshes, I invest in the market, I grow out my hair, I sing from my chairs, I sketch my dreams, I inspire lust, I love traveling, I love my mutations, I love other crips, I love life, I love.

But the worst thing they still do to me is oppress my expectations. What I love differently from anything else is when the world reveals to me the boundaries of my own imagination, and in that revelation, expands them. After feeling silenced, having a CEO emphasize my words. After always needing to “request accommodations”, getting an email about captioning already being set up for this year’s inauguration. After not even being erased from history because Disabled people were never recorded in the first place, being invited to an oral history project for my alma mater, learning that the student group I co-founded there still lives ten years later, and witnessing that group #SayTheWord as they evolved their name from Power2ACT to Stanford Disability Alliance. After seeing Disability confined to Disability spaces, being invited to an online Complexity Weekend event and seeing accessibility highlighted in the opening address, learning how another participant was already involved in Disability performance art, and seeing that the Gather.town platform included characters in wheelchairs. After seeing Disability left off the diversity list or put last on it, being nominated to speak at the same diversity conference as Michelle Obama, not being the only Disabled speaker there, and being told by a viewer that “It was 10x more important” for her to hear my talk than Michelle Obama’s. After being the first like me in every room, being invited to give a talk for the American Marketing Association, being contacted afterwards by a director already working on Disability inclusion in her company, and discovering that I had not been the only person with a neuromuscular disability in the call. After being a bold voice but a lone voice, having a loyal friend speak up for me.

How many times have you come back to life?

The future will be better. It had better be. I hope you’re living in a time that looks back on mine and thinks what an outrage it was that a human being born without muscles was solely responsible for managing their daily survival. That the primary purpose of money was to make more money. That doing the right thing was a matter of conscience.

Write back to me if you get a chance. I’ll join you soon.

Aubrie