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.
It’s so lovely to hear from you. I’ve been watching you for a while, and I must say, I’m very proud of the person you are becoming. I hear you’ve been having some trouble at school, and want my advice on what to do. Well, I’m glad you came to me. I’ll do my best to tell you what I needed to hear when I was in your same position, without sugar coating my advice, since I’m sure you can get the rainbow version from others in your life, but sometimes you need to hear the real version, which I think I’m uniquely equipped to give you, since we share the identity of being disabled and some, though not all of the same experiences.
So, you’re struggling with having to return to school, whether it’s from a Zoom environment back to in-person school, or returning after a stress free summer break. I first want to tell you that you aren’t alone, I’ve been through the same things you are experiencing, and am familiar with the feelings of mourning and despair at the eventual return to the places you detest.
Next, I want to tell you to feel what you need to regarding events that are out of your control. Far too often as disabled people, we are told to bottle up our emotions, particularly the negative ones, because well meaning people in our lives don’t want us to be seen as the “angry” disabled people, or worse, the “sad” disabled person. By trying to numb your feelings, in an attempt to protect yourselves from people who may use them against you, the only thing the numbing will accomplish is making those feelings intensify, to a space where you can’t control them anymore. Yes, it’s horrible that most schools won’t be allowing remote learning to continue into the next academic year, even though I and maybe even you, laud the benefits it allowed for our education as disabled students. Feel that anger, feel that pain for as long as you need to, until the pain doesn’t go away, but simmers to a low roaring fire inside your chest and drives you to advocate for what you need- if that’s what you decide, because remember, it’s also OK to just be a kid once and a while too. You are a person, first and foremost, and every person has feelings. You don’t exist to defy or break the negative stereotypes that are put on you, you exist to be yourself and find yourself in an environment that you can live in, that pushes you to grow, but not to snap.
While for many non-disabled people, school is the place where they can learn, feel and grow, for disabled people like me (and you, friend whom I’m writing to) school doesn’t afford for any of those benefits, because the ostracization and exclusion that stems from hatred of our disabled existences make school a place we want to escape from, rather than thrive in.
Growing up, I kept a running calendar in my head, and each day I left the school doors, I rejoiced as I crossed off one day I soldiered through, one day that I was closer to summer break. Summer was my time to grow and discover myself, without the insults and pain of being in a space where I wasn’t welcome.
“OK, Anja, I like that you are sharing your experiences here, it makes me feel less alone, but didn’t you say you were going to give me some advice on how to actually, y’know, deal with being picked on?”
Before I tell you my advice, I’d like to drop one more dose of reality upon you, because at least for me, it’s easier to get caught up in the fantasy of what could be, rather than what will be. You will have to go back to school after summer ends. Honestly, there’s no way to get around that, and trust me, I’ve tried pretty much anything; from faking sick to begging to be homeschooled. Don’t despair though, I’ve picked up some pretty great tricks to make the summer blues not have as big of an impact on me, and I’m going to share them with you.
When the end of summer rolls around, it’s easy to start getting upset prematurely, because your mind and body knows what may be in store for you, and it wants to warn you from that pain, sometimes even by inflicting the pain on you itself. So, think about one thing that you are looking forward to when school starts, whether that’s using a new planner (I love office supplies, I’m such a nerd) or meeting a lot of new people. In this small way, you are taking the power back from the people who tried to make you hate this time of year, and that’s something any bully will be afraid of, since they want to continue to hold the power over you.
To that end, if in a new school year, the bullying continues, you just have to remember that you have one weapon that they don’t- you have the ability to claim the insults they hurl at you. For example, if a bully excludes you from a game on the grounds of your disability being freaky, try to tell all the other kids playing the game that your disability is a part of you, and you can still play games with all of them while accommodating your disability.
In my experience, the bullies won’t always listen (in fact they very rarely do, that’s what makes them so frustrating!) but one of the kids may understand you and want to include you- maybe you’ll even make a friend, and don’t friends always make the essence of summer fun stretch through the dreary school year?
All my best,
Hey there, I got your email, letter, Tweet, or direct message. Or maybe I met you at an online event or at a party pre-pandemic. Or maybe I met your mom that one time I was shopping and she stopped me and cried telling me how amazing it was to see someone like you but older. Or maybe it was from a friend of a friend who connected us because we both happen to be Asian American and disabled (we are not a monolith and yet people presume we automatically have a lot in common). Either way, here I am, replying to you.
Thank you for sharing your story with me, your questions, and your request for mentorship. First of all, I see and hear you. I hoped things would be better in 2021 but it’s clear that disabled people of color, including Asian American women and girls, still feel disconnected and alone. I did not set out to become a storyteller or activist but it emerged organically as I struggled to find myself and my people. I hope my story and work helps you imagine other paths but please remember I am just one example. There is a lot of work ahead and collectively we can create change in our own ways.
Shit is hard, right? Growing up and becoming more comfortable in our own skin is a tough, non-linear process. I am still working on myself as I imagine you are too. In the midst of your challenges and searches, I hope you are taking your time to find joy in the world. Building and nurturing relationships gives me joy. It might take a while but you will eventually find people that have your back whether they have the same disability or come from the same culture or not. And maybe there aren’t any solutions or immediate answers to the questions you’re looking for. All we can do is discover what and who makes us happy.
We don’t need a nonprofit to find a community just for us…we don’t need to identify, use the ‘right’ words, or carry a membership card to be connected. We exist and that is everything!
It’s easy to say and harder to accept but you are enough. In fact, if you’re too much, rejoice in being ALL THAT and more. This may seem like a cliché, but you do you.
Do not feel obligated to represent, speak on diversity, intersectionality, or ‘what it’s like to be Asian American and disabled.’ You can talk and think about disability however you want. Fuck the rules. Fuck the model minority myth and respectability politics.
There will be times you’re made to feel like you can’t be your full self, that you have to choose. Or the feeling that we have to be grateful to be in America because things are ‘better.’ Resist the notion that disability rights and justice is more progressive here (on stolen land by the way) or a beacon to the world because that’s some capitalist colonizer bullshit. We can take the best parts of our cultures and let that inform our understanding of what it means to be human. There is wisdom and beauty from disabled people everywhere. We just have to look and have the humility to learn.
I appreciate the time and vulnerability it took for you to reach out to me. To keep it 100% honest with you, I am not your role model, mentor, or friend. I prefer to be your fellow peer, colleague, or troublemaker in the future. Role models create unrealistic expectations and an asymmetrical power dynamic; role models or icons can do more harm than good because they obscure the flaws and contradictions we all have. I’ve become increasingly uncomfortable over the years in the way people perceive me because it’s A LOT. I don’t want the fear of disappointing others to influence my decisions and in the end I am ultimately accountable to myself. Setting boundaries and being clear about my capacity is one way to protect myself and I encourage you to do the same when you are ready.
Living at multiple axes of oppression can be heavy. The many identities you hold and your lived experiences are not in conflict with each other; they make you sharp, whole, and extraordinary. You may not see yourself that way yet but I believe in you and who you will become. No matter what happens, even if we never cross paths or speak again, I am grateful that we are in this universe together.
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”:
- Conduct genetic testing on the fetus so its parents can abort it if it is a mutant.
- Make life miserable for it if born.
- Tell people how miserable its life is, so that if those people become parents, they can comply with step 1.
- Keep it at the bottom of every social hierarchy and last on any list.
- Repurpose its names as insults and as synonyms for “bad”, “wrong”, and “unwanted”.
- Limit its housing.
- Restrict its movement both inside and outside where it lives.
- Disqualify it from insurance.
- Invent reasons it does not meet the requirements for your job.
- Remove state support systems if hired.
- Segregate it into institutions where it will be more likely to contract illness and die.
- 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.)
- Take away its ventilator if it comes to your hospital for treatment.
- Do not resuscitate it.
- 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.
Oh how you’ve come around.
The more days and years I wheel through this world, the more relevant you are.
We’ve become close. I know you so well, and yet not at all.
Paradox, you are what is past, present and future.
To love so deeply // to grief so deeply
To be the oppressor // to be the oppressed
To feel narrowness // to feel spaciousness
To know so much // to know so little
To be seen as a woman // to not be a woman
To be visibly disabled // to be invisibly disabled
To be Disabled in joy and connection // to be Disabled in pain and isolation
To not be the one who made me ashamed // to be the one who can make me proud*
You are the opposing truths that happen simultaneously.
Paradox, the more I wake, the more I wake up to your inevitability. You are here, not going anywhere, anytime soon.
More people will die and more people will be born–close beloveds // faraway strangers.
Bodies and lives intrinsically tied to histories and presents of violence and oppression // to loving dreams and possibilities of liberation.
Paradox, you help me hold the both/and. I welcome you. I hold you close.
Welcoming you allows me to learn what is working and what is not.
Listening to you means I am moving closer to what is more freeing and loving.
Embracing you means I am practicing living into the wholeness and messiness of my humanity.
Paradox, thanks for helping light my way–and for obscuring it, too.
*This line pays homage to disabled poet Laura Hershey’s piece “You Get Proud By Practicing”