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

Dear Friend

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,

Anja 

Letter to Asian American Disabled Women and Girls

Hello!

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.

Your comrade,
Alice

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

Dear Paradox,

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. 
You are…

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.

Sincerely yours, 
Allie Cannington  

*This line pays homage to disabled poet Laura Hershey’s piece “You Get Proud By Practicing” 

The theme of paradox was inspired by Chloe Zelkha’s Avodat Lev facilitation, including, but definitely not limited to, the “xx // yy” expression of paradoxes.
Special thanks: Sarah Hoops

Dear Community Organizer,

Damn, you’ve been busy! It’s been one hell year for you. You’ve been working nonstop. And while I am so grateful, you exist and appreciate the work that you do I am beyond frustrated with you. You see, as a disabled woman of color who is always ready and willing to go to battle with you, to be lead by you, I am constantly reminded by your actions that you don’t see me, you don’t see people like me, and our struggle is constantly ignored by you. It’s funny because being seen is so important to you. It’s essential that the world recognize your humanity. So I ask you, friend, am I not human?  

We are more alike than different! If you just took a second to breathe, to pause, and recognize that we are suffering alongside you, where would we be? We are battling for our existence too. Every piece of this system is constantly working to not only kill us but to erase us. 

My friend, have you done your homework? Studied those who gave their lives in the name of change? Did you read the books written by and about those who created the foundation of community change? Historically we can pick many. But if I could just for a moment highlight a group, I’d ask you to take a look at the Black Panthers. They believed that in order to be truly liberated, we all must be liberated! All of us and anything short of that is a failure. So as you plan your next move, I urge you to think about your leadership and whose liberation is being discussed? Who’s liberation isn’t represented? How can you better unify and what are you missing? 

And lastly, I ask how many more, how many protests, campaigns, speeches, parades, and marches are you going to orchestrate in the name of changing the world and daring society to be better while you ignore disabled bodies. Having an ASL interpreter available is not enough. Plan for us, include us, and recognize that we too can lead.  

 Being disabled might mean that we look different, but we are one! 

Respectfully, 
Jeiri Flores

Dear Irresistible Revolution,

“As a culture worker who belongs to an oppressed people, my job is to make revolution irresistible.” – Toni Cade Bambara,

Dear Irresistible Revolution,

My understanding of you is etched out of edges and angles, composed of changes and consequences, preserved in passion and patience, tethered to truth and transformation. Revolution, you cannot be evaded or erased. You live in the breath, blood and bones of every Black Indigenous Person Of Color with a disability. The mere thought of letting you go terrifies me throughout the night and the very idea of holding you eases my entry into each new morning.

To turn away from you is to turn away from everything within me. I am far more emotional because of you. Not just in relation to an emotional presence but in the sense of emotional transcendence. I have 1:00am conversations with Anger, 11:00am calls with Happiness, 3:00pm discussions with Fear, 3:10pm talks with Sadness, 5:00pm chats with Courage, 9:00pm debates with Worry and midnight moments with Love. Holding space for these emotions to exist holistically in my Black disabled body is a radical act of healing and daily dreaming. You have helped me to observe how dreams can grow in both daylight and shadow. You have held my hands as my fingers trace across the various shapes of my trauma. Some of that trauma is generational familiar to my mother, grandmother and great grandmother while other forms of that trauma are more acute known only to me and God. Thank you for being my Sentry as I search for safe spaces for both my mind and body to exist freely in a world that rotates atop an axis of ableism and anti-Blackness. 

Revolution, you are with me always. In the predominantly white workplaces, in the businesses that fail to accommodate people with different types of disabilities, during disasters/emergencies, in classrooms and hospital rooms, you are always there. With every breath and each heartbeat, you live, I live, we live. Sometimes subtle and semi-silent but most times bold and profoundly rowdy when necessary. I derive so much pleasure from having you inside me, a feeling that is overwhelmingly organic and orgasmic. Thank you for this embodied knowingness especially when there are so many external unknowns beneath my feet and ahead of me. Just knowing you are here and that you will be there, somewhere in the future, is more than enough. You are my most well-known secret. They know you so they fear us. The joining of our collective power is a problem for those who have never resided within the margins. But you and I, we like to stretch out. We deserve space on every page. We are not asking for permission to show up because irrespective of whether or not they choose to see us, we are still here. We have a common love interest, liberation. We share a similar discipline, hope. We are mutual aid dance partners in movements. We are an ever-lasting entanglement. I could never live this life without you, my beautiful, beloved and irresistible revolution. 

Forever yours,

Justice Shorter

Dear Grief during a time of COVID-19

Dear Grief, during a time of COVID-19, 

It’s been now more than a month since my brother died. My family and I have been struggling with losing our loved ones. The paused grieving process that so many people are experiencing as we wait for our families’ bodies to move out of storage freezers and into those spaces where we can find some sliver of solace.  Like many others, I want to be able to do something that COVID-19 has forced us to wait for now or give up altogether.

My brother Eduardo Arturo was 34. He was Native American and Mexican. Two Spirits, and a person with a disability. He had been living with AIDS for over a decade. Our family would ask him to buy us a lottery ticket whenever we saw him because we all thought he was such a lucky person. When he developed AIDS, he had had several opportunistic severe illnesses that needed significant hospitalization and, on several occasions, life support. He would always recover, come out of the hospital filled with hope for the future.

The COVID-19 epidemic changed everything for all, especially for disabled folks who are at high risk of contracting and having the worst health outcomes, like my brother. In the first weeks of the state lockdown, I saw how people like my brother, in many ways, were left to fend for themselves. Many could not go to the store to buy food, either, because of the large shortages that came with people hoarding supplies. Others went without food because of the lack of public transportation and the limitations of waiting in line and carrying needed supplies back home. Unable to get necessary medical services, people like my brother began developing worse medical conditions. The clock started running out faster. 

Here in Los Angeles, going to get services at doctors was a life risk activity for many. That is, if doctors were even available. Hospital visits became a type of COVID-19 roulette game because of the high exposure rate. Some hospitals would quickly discharge high-risk patients, and in some cases, they just started turning ambulances away. For those who would be admitted, the constant anxiety of exposure was real. It compounded, even more, the isolation that many hospital patients are experiencing because hospitals are not allowing visitors or support staff for disabled people, which forces so many to leave the hospital before they can get the necessary medical care they needed.

I saw my brother’s health go down quickly. In the first 8 months since the pandemic began, he had to go into the hospital over 7 times. Each time for complications that were more serious than the one before. He was terrified of going into the hospital, always waiting until the last minute before asking us to call 911. We have had several family members die alone of COVID-19 in the hospital, and for him, this was a real possibility.

To help with his medical needs, my family and I created a hospital at our home. I turned my bedroom into his care space to monitor him and make him comfortable. Because of the shortage of home nurses, I quickly had to learn to do his IV’s, CPR, and other things. I monitored the long list of medications needed to help him manage his AIDS and the many side effects. 

I learned to be patient, not just with him but with myself. I had to learn to control my expressions so that he would not see the fear in my face when I would see how much his health was deteriorating. I had to learn to listen and just be there when he was not feeling well and was angry. I started writing, recording, and tapping all sorts of conversations with him because I knew he was running out of time. 

Often when I would be taking a shower, I would just break out in tears. I was constantly checking on him to make sure that he was breathing. And my dreams were filled with constant anxiety.  I would wake up feeling more tired than the day before. I had to seek help. I felt like my family was dying around me, and I could not protect them.  I felt like my family and I were left all to ourselves to care for him. The isolation from the pandemic meant we were all together as this was happening, and we could not have others with us for support. 

Now that my brother has moved on. I feel I am stuck in the space of grief, and it feels like madness. I tried asking for therapy help from my local department of mental health, but they could not help since they are in pandemic mode and there is a staff shortage.

I was able to get some help from my local Native American community clinic, which was able to find a therapy student that could offer me support. And once a week, I would find someplace for me in the house for one hour and check in on how I was doing. 

COVID-19 has made folks skip birthdays, weddings, funerals. It’s something that we have had to give up for right now. I am deciding to hold on to my brother’s memory, not forget what has happened in this once in one hundred pandemic. For my family and me, grief has a place, a voice, and a right. The nights are confronted with warm stories about my brother. We go through pictures and memories that tell us irrefutable who he was for each of us- son, a brother, an uncle. When the ashes of his body come home when it’s all safe for all of us to come together again and remember those whom we lost in this pandemic. I will honor what he taught me in his final days and strive to be humble, compassionate, and grateful. And to buy one more lottery ticket, because that is hope.

In unity,

Héctor M. Ramirez

Dear High School Guidance Counselor #2

Dear High School Guidance Counselor #2,

When I called you about 5 years after graduating, thank you for picking up. I was scared and said something like “I’m so tired that I’m afraid that if I was crossing the street and a bus was coming, I just wouldn’t get out of the way.” 

And thank you for suggesting I go to the psych ward. You mentioned going in after a tragic event and enjoying the drugs they gave. I remember the honesty in your recollection, it fills me with love for you. So, I went. It was ok. As trans icon Miss Major would say “I’m still fucking here.” 

But I didn’t take the drugs. I went in because I was exhausted from all the revelations re figuring out being multiple, more than one person in this body. I mentioned it to a psych nurse. She said, “don’t take anything they give you, in my experience nothing they can give you helps.” That honestly also left a big impression on me, on us. Enough to withstand tsks from the other nurses. I’ve taken some things since then but not much. I sometimes wonder if I should be taking more. And I’ve met a lot of other multiples who are taking different psych meds that they find beneficial. But anyway. Thank you. Thanks for picking up. You contributed to saving my life. I wasn’t a danger to myself, but I felt in so much danger and being in a place that was structured and safe for a week, even if it was stigmatizing in other ways, helped me.

One thing that SUCKED was I checked TWICE to see if they took my insurance, they said absolutely. Yet for a one week stay, I received a bill for $3,000. I called to inquire: what the fuck? “We take your insurance, but the resident psychiatrist did not.” WHAT A RACKET. The Psychiatrist. In the Psych ward. Who you have to talk to if you want to leave. Anyway, not your fault, just venting.

I really want to catch up sometime. I have had the urge a few times a year for a long time.  So here [contact info] same number. I live in California now. But if you still live in DC, I’d really love to go to the zoo with you sometime when I’m back there. 

I was so scared then! It’s hard to go back in time and reassure past selves that they made it over that steep trench of uncertainty. It’s ok. It’s ok. It’s gonna be ok. What I was experiencing then was kind of shock at realizing my own multiplicity, being many people in a body, and it’s now a pretty mundane and also wonderful aspect of my life, and all of us here in our body call ourselves [system name] and we get along really well, and we’ve done some activism and community-building to help and connect with others like us too and that’s been really nice. Will send you some links but morethanone.info is pretty good. Excited for you to meet everyone actually, because some of them remember high school which includes remembering you, too.

We have had a lot of good life since then. It’s hard to look at that time even 9 years later. So, I’m glad you picked up the phone and looked at it with me then. I think I need to spend more time with that year of my life. 

We also identify as nonbinary, collectively. Please use they/them pronouns to refer to us, and don’t call us our old name. It’s ok if you make a mistake, I just want you to have time in advance to internalize the concepts a bit so when I need to correct you it’s not news.

Oh my god you must’ve hated the Trump era. We did too.

Sorry it’s been so long. But also, oppression sucks so I forgive myself. Heh.

Talk soon!

Eliza et al. 

[system name]

Dear Approval Addict

Dear Approval Addict,

Checking in on you. How long have you spent this week hovering over an Instagram or Twitter post waiting for a like or retweet? How much time have you spent wishing it was you instead of [Current advocate/activist who has the spotlight of the moment?] who has the byline, or panel invite, or a twitter mention from some public figure the world swoons over?

Let me begin by saying, I FEEL YOU. Deeply. It’s likely you’ve spent much of your life aiming to collect a bucket full of “Yes! You’re amazings!” to validate your very existence. If you’re like me, you carry so many identities that even if you feel like you’ve received a stamp of approval in one space, you likely don’t feel the same in another. And now, if you’ve become connected in one manner or another to the disability community…well, here’s yet another group of people that you wanna win the hearts of.

Now, let me encourage you, as one who has learned the hard way: LET. THAT. ISH. GO. Easier said than done, I know. But, take it from the woman who used to sit with flashcards every night trying to remember the names of the “key players” in the community and all of the acronyms for everything disability-related just so she could fit in during work meetings and community gatherings -it ain’t worth it! These people are just that. PEOPLE. Decades from now, their approval of you will have had little or nothing to do with where you end up (unless you’re down with having these folx control your life, which I DO NOT recommend). 

If you’re the type of approval addict who’s willing to take someone else’s authentic ideas and work and act like it’s your own…Or, perhaps you’re the crip who pulls from other social justice movements in the name of “comparison” to get sympathy (aka approval) from those who don’t know any better? We see you. We know you. And we’re exhausted from calling you out and trying to fix your mistakes. Two words for you: JUST. STOP. 

Take a step or a roll back and ask yourself the one question that changed my life a few years ago: What do YOU want? Forget what everyone else is doing or saying. What do YOU want to say? What do YOU want to do? And what do you NOT want to do? Don’t feel obligated to co-sign or maneuver a certain way if you’re not totally sold on it. Go with what you desire to see manifested in your life. Write and/or document this. Reach out to people who you believe you can trust and ask if they can provide guidance. I can’t promise you a “yes” from everyone, but I imagine there’s at least ONE person available to guide you.

With all sincerity,

A Recovering Approval Addict