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Christy Tending | Longreads | February 2, 2023 | 14 minutes (3,768 words)
There are things that able me. A chair. One person speaking to me at a time. Shoes that are not cute, but spare me nerve pain. A hot bath with epsom salts: so hot it would scald most, but my skin is like Kevlar. It craves the heat and wishes for it to dig deeper. These are simple but necessary things that make my life more livable.
They do not “enable,” marking conspiracy in a habit I am trying to quit; I am not done yet with my propensity for being alive in the world and I’m not ashamed of what these things offer. They able me. They render me capable of basic participation in my life in its myriad and fantastical forms: watching my child play soccer; eating dinner with my family; browsing through my favorite bookstore; coordinating a protest; hiking with my friends.
These accommodations — and others I require but have not named — are not merely comfortable, but necessary, an antidote to the ways the world, as it is, dis-ables me. The way the world tries to tell me that simple pleasures do not belong to me. Due to the burdensome inefficiencies of my body, I deserve exclusion.
When I train activists in street protests and direct action, which is my avocation in this lifetime, one of my rules is “One Diva, One Mic,” which is to say, “Please shut the fuck up when someone else is talking because my brain cannot process multiple sounds at once.” I talk about how a motorized scooter can make for an excellent blockade tool. Disability is not the same as vulnerability; I have been deemed broken, but am not fragile. And when I raise my voice in service of my needs, I am teaching others to do the same. When we meet our needs together, we are building the world we want to live in.
Translation and interpretation take many forms. Sometimes, to make someone able and free to participate is simply to speak in a language they can understand. Sometimes, when my husband and son are both talking to me at the same time, I put up both hands and say, “Chotto matte, kudasai,” which means, “Please wait a moment” in Japanese (which means I am serious; when the white person starts snapping at them in Japanese, they know it’s serious). Auditory overwhelm means I need quiet and accommodation from my own family.
My son brings me a pillow for my back, and then climbs into my lap. I am cushioned and I am cushion. This is how care happens.
If my life were a cheesy ’80s movie, it would open in freeze frame: me, lying on a field, trapped underneath a pony who crashed to the ground with me as his only buffer; my exasperated voiceover saying, “You may be wondering how I got here.” I was 12, about to enter the seventh grade.
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In the film (as it was in life), the pony stands up on my left femur, righting itself. I have a concussion and a broken nose and a horseshoe print on my thigh. I am taken, in cervical collar, away in an ambulance. The horseshoe bruise is so thick I can’t fully zip up my chaps for a couple of weeks. The film speeds up, hurtling me through time. I cannot tell you when the pain began, but underneath the pony is a good time to start.
At 12, I did not have the context or the language to understand what I was becoming or, more specifically, what was becoming of me. It took years, decades of working with and through disability justice frameworks to fully give myself over to incorporating disability as a part of my identity and to understand how disability colors my life and my self-perception.
When I did, it became easy to catalog: scoliosis, clinical depression, complex post-traumatic stress disorder, generalized anxiety, chronic headaches, auditory processing issues, ADHD. This is not exhaustive, but the rough sketch of things. This list does not account for my humanity — the person experiencing all of this — only how I am failing to measure up to the demands of capitalism. People want to know, without putting it quite this way, how I am compensating for these shortcomings. They very nearly ask for an apology that is not coming.
More than once, someone has told me they couldn’t “live like that.”
I have finally gained the fluency I needed to recognize and appreciate and celebrate myself as disabled. I do not embrace the term for having accomplished or overcome anything, and not as a signal of defeat (although there are plenty of people who love to see it that way), and certainly not as a beacon of “inspiration,” but as a loving gesture toward myself. To see myself as disabled is the entrypoint to access what some call self-care, but I call compassion.
Disability is not a sign of failure to care properly for myself, but as the beginning of meeting myself with the tenderness I require to move through the world. It is still a radical statement to meet your own needs without prerequisite, without means-testing your efficiency under capitalism. Acknowledging myself as disabled means I can then work to subvert the forces disabling me. Which begins with my worth and what goodness means. When I tell people, “I’m disabled,” they cock their heads to one side and frown. “Don’t say that,” they respond, bottom lip plump. I know I am supposed to comfort them, to take it all back, to smooth things over. Disability shames us both: the witness and the showgirl. Their embarrassment tells me I have subverted the unspoken contract. I do not want to soothe them; I am worth knowing myself.
At 12, all I knew was that other kids my age did not talk about pain in the way I did. Pain did not interfere with their experience of being 12. The other kids seemed limitless. I felt limitless in other ways: to ride bareback through the streams and ponds and fields and forests and hills of Maryland, without adult supervision, is the closest thing to pure, uncut freedom I can imagine for a middle-schooler.
The hardest thing is standing still. There is something about being upright, stuck in place, that is agony for my spine, my hips, my feet, my knees. Any arch support will ultimately fail if I am forced to be in one place without a chair for long. It feels like my brain is melting. I cannot form sentences and my peripheral vision grows dark.
Which is not to say in horseback riding I was immune to injury or consequence, but for a time, I was exempt from the force of gravity on my joints. I could find freedom in my partner. Together, we could fly. Part of freedom was the knowledge that our problems were ours to own, to fix or fumble.
In hindsight, it is difficult to untangle, like a well-plied yarn, what was chronic injury and what was the insidious beginning of chronic pain. When I was recovering from multiple concussions from horseback riding, I assumed if I simply stopped injuring myself, I would stop hurting. People would jokingly say, “Wait until you get to be my age!” As though pain is the exclusive domain of those over 40. As though I could not know agony at 12 or 14 or 16. I could. I thought, I am, right now. This kind of gaslighting is obviously harmful, when you say it out loud. Our society is so skilled at telling children not to trust themselves: to ignore their bodies’ signals, to focus on a body’s aesthetics, and to only value its abilities.
When my son says he is finished with dinner, I tell him the same thing each time: Thank you for listening to your body, no matter whether he’s had a fourth helping or eaten three bites. The quantity of food he consumes is not a goal in itself. I don’t care if he didn’t want to try the new thing I offered. What could be less my business than what another person eats?
Pain exhausts my mind. Stress and anxiety and depression exacerbate the pain. My disability keeps me so busy that I meet myself coming and going, like in the Dunkin’ Donuts commercial. It is both time to make the donuts; and I have already made the donuts.
What counts as disabled? (This is the same question I have been asking about my queerness since I knew enough shame to wonder: What is enough to count? To be worthy of being seen? To be real in the world?) I couldn’t tell you the answer, nor am I interested in policing anyone else’s experience of disability. I don’t really care anymore, if I’m honest, because I cannot know by looking at someone, and neither can you. What I do know is inquiry and identity give us access: to ourselves, to language, and finally to the accommodations that might actually grant us access. Identifying as disabled means I stand a chance of getting what I need. Much the way my pain is not static, being disabled is not a fixed position, necessarily. What if our needs were met? What if our unique way of being was honored?
I have never felt like enough. Not queer enough or disabled enough or mentally ill enough or enough like a mother, to qualify. It is not my reluctance, but my fear of taking someone else’s place, someone truly worthy. Someone who is enough. It is not internalized ableism, but my fear of claiming who I am as someone else decides I am a fraud; a heartbreak beyond words. There is stigma, of course. If I claim my disability, will it be turned against me? Like the boy in fifth grade, years after I knew I liked girls but years before I claimed a queer identity, who called me a dyke as though that’s a bad thing. I avoided getting sober for years because I wasn’t enough of a drunk; I hadn’t properly suffered.
I never reached the bottom. Or maybe there is no bottom — not really. At 40, I know who I am. Disabled, queer, mad as hell. Sober.
When I was still riding, I was often asked to ride other people’s horses and, for lack of a better phrase, “Show them who was boss.” My father’s horse was an enormous black Trakehner, an East Prussian warmblood who did not always do what my father asked of him. So sometimes I, at 16 weighing 100 pounds, would hop aboard. Patrick would turn his head toward me, I would pet his nose, and then we would fly. Patrick would do whatever I asked. He was capable and athletic, and he knew despite my tiny size, I wasn’t going to take no for an answer. He also knew I wouldn’t ask him for anything he couldn’t do. I couldn’t muscle my way into making horses do what I wanted, but they learned to trust me all the same. I had a pony once who loved me so much he would come running across the field at the sound of my voice. I didn’t need to use a halter and lead-shank: He would heel like an overgrown golden retriever, eager to please. He would follow me to the barn, with his enormous head against my hip. He’d stand and rub his face against my rib cage as I tacked him up.
This is all to say my riding skill didn’t rest on authoritarianism or brute force. It was my intuition, compassion, and trust. It was a mutual effort. Horses, like most prey animals, can be tightly wound. My senses also had a hair trigger. One false move, and the muscles around my spine would spasm. Together, we could process an overwhelming amount of sensory input and turn it into something graceful and harmonious. In the face of the pain of daily life, this was my solace: working in tandem with another being, often just as terrified by the threat of disaster as I was.
Show-jumping has a steady rhythm: short outside lines, long diagonals. There are flower-boxes and soft dirt, birds in the rafters, a cool breeze, and an early sunset when you’re showing in October. Heels down, hands soft. Sometimes, you can walk the course with big strides, marking your lead change with a heel: a little hop to ease you around the corners.
I could read the subtle energy in my body more easily than my peers who hadn’t had to wonder why they woke up with neuropathy in their shoulder or why their spines sounded like breakfast cereal when they bent over. But those neural pathways also gave me information: Dig your heels in here, lift your hips now — and when I did, my pony would sail over the jump, lifting us both. Riding doled out injury and served as a balm for my more ordinary chronic pain.
My body gave its lessons early. This is not forever. For better or worse, this will not last.
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When I say I am disabled, this is what I mean: I am tired of not getting my needs met. I am tired of basic human needs being an afterthought. If I am “giving up,” the only thing I am truly sacrificing is the illusion of exceptionalism and individualism that got me into this mess in the first place. I am burning down the myth of self-sufficiency — or the idea that self-sufficiency should be a goal unto itself. I am surrendering the idea that I am a burden for having needs. I am demanding to be a part of the team and to be honored for what I bring to it.
It is expensive and time-consuming to be disabled. While I am not afraid to have my needs met, it is exhausting to have to advocate for myself every waking minute. It takes so much more time and energy and support to get what I need. It takes thought and preparation and resources to move through the world. Being disabled is also tremendously boring: Sometimes the days stretch out into weeks or months when I wish I were doing something besides my healing slog. I know the words will be back; I know one day my body will endure sitting at a desk again. Or maybe it won’t, and I will ponder that when it comes. There is no way to account for how I spend my days during those phases of necessary interiority.
For years, the person-first identity was pervasive. “People with disabilities,” they would say. But my disability is not luggage, separate from myself. And there is a kernel of truth inside me: Had the values of capitalism, white supremacy, and colonialism not crept so pervasively into our collective consciousness, I would not have been rendered disabled in the same way. If we, collectively, engaged in mutual aid in more than fits and starts, then perhaps insisting on having my needs met would not seem so anachronistic. Instead, I am seen as entitled when I meet my needs, and yet pitied for having needs at all. How pathetic, they seem to say. How cringe.
When they tell us we’re people first — that we shouldn’t say “disabled people” — it feels as though they are worried that one day we will implicate who has disabled us and who continues to poison and maim us as we try to heal. Their brand of capitalism is the same one that demands endless growth, even from those of us who do best lying fallow in the afternoons. The ones who insist on ceaseless cheerfulness. I have pulled myself up by more bootstraps than I can count. But I know this: After you have pulled yourself up, the horse carries you.
Part of the trouble with invisible disabilities is that you keep having to explain yourself. I’m not lazy, I want to say. And yet, in certain contexts, I am, in turns, “a hearie,” “a walkie,” and so on. In those moments it is my turn to be a facilitator: to make space, to create connections, to meet needs where I can, to help patch the way between here and access. This means knowing who needs to leave at what time so they can make it to work; who needs to be on the left side of the stage to hear; or who might need the Advil or Clif Bar or extra pair of socks I have stashed in my bag. I move as deftly as I can, remembering to create for others the conditions for getting their needs met, one cell in the body of a complex organism. This is what community care can look like. Sometimes it means giving and other times, receiving. Sometimes, it simply means making sure that everyone in the group knows where I am and where to find me so that I can troubleshoot. At the very least, my work is to help create an atmosphere where those who have needs know they belong. All good activism, even street protests, begin with consent; people should be able to move back or away or into a different mode at any moment, without shame. The group’s work is to respond with care to the needs of its individuals, even when those needs shift.
I am still learning, fucking up, apologizing, fumbling forward. If inquiry offers me the gift of understanding myself as someone who has been disabled in certain contexts, it also yields this knowledge: In other contexts, I am not. And in those cases, I have the obligation to tear down barriers that, while not an issue for me personally, oppress others. While my disabilities’ invisibility in some contexts robs me of being taken seriously, at times being able to be covert, to fly under the radar, lends me a certain kind of power. It comes with responsibility.
Some of my favorite protests are the ones where I can play a specific role, one that feels well-worn and comfortable for me, without having to do the heavy lifting of organizing. Let me block traffic or wrangle reporters or talk to the cops, things that might feel scary for younger activists, without the actual, real work of logistics and getting people to show up. Often at protests, I feel like something between a camp counselor and a firefighter, spending my time handing out Clif Bars and extinguishing conflicts before they can overtake the group (and the message we’re trying to send).
In the summer of 2019, a coalition of groups staged protests outside of the ICE building — to protest family separation at the border and Trump’s draconian immigration policies — in downtown San Francisco every day during August, with a different group “adopting” a day during the month. I went to six or seven events. My favorite was when I was asked to be the police liaison for a coalition of disability justice groups who had committed to anchoring the action. I find freedom in being somewhat mercenary.
I am not big or scary, but I have a set of skills. I know how to talk a security guard out of messing with our equipment. I know how to move the larger group to protect a higher-risk few. I know when a tense situation can be dissolved with singing or when to raise the energy of the group with a chant. I know how to watch the police and to recognize their gear. I can translate what they’re wearing into an understanding of how they are reading our action. Do they read us as a threat? Should we read them that way? I have learned to do this so that those who should be at the center can focus on the message. I am fluent enough in these to “Show them who’s boss.” I’m there to do my job invisibly: decentering myself and using my skills as a crowbar. My work in those moments is to leverage my experience and my credibility to create ease, a feeling of safety, and ample space, so the organizers can do their real work of delivering the message, rather than worrying about the cops.
The message is this: No body is disposable. No one is illegal. Migrant justice is inextricable from disability justice.
In the middle of the action, things are calm. What I know is activism in San Francisco is safer than most other places — especially places where they aren’t used to it. I’ve done actions in rural logging towns and in smaller cities like Charlotte, North Carolina, and Minneapolis, Minnesota, and I’ve learned: It’s more dangerous when the police are scared or surprised or don’t know what to expect. It’s riskier when they are excited to get to try out all their pretty, shiny toys on you, not knowing how they really work. Boring is the best case scenario. Everyone knew their role. I, as a “walkie,” roamed the crowd, to watch the police, communicate with them when necessary, translate information back to the group and keep folks from coloring too far outside the lines. Sometimes that means honoring our shared action agreements not just to protect ourselves from becoming targets, but protecting the more vulnerable folks we’re working with. Acting as a beacon and a deterrent.
Afterward, I went home and spent the next couple of days lying down as much as possible, feeling the impact of my heels on the asphalt radiating up into my lower back, the exhaustion of holding myself upright and alert. The residual adrenaline I feel from my PTSD needs time to dissipate, no matter how chill the cops are. Sometimes, this healing is private, but built-in recovery time is a necessary part of my activism. I am not as elastic as others.
If reminding people I am disabled is what it takes to let people know I have needs or they should quit being ableist, then so be it. If I have to out myself — to tattle on my chronic pain — to get a chair, fine. I will never apologize for it or undermine myself again. I will never downplay what I feel or what I need. I am worth getting my needs met, with or without a disability. I am worth taking up space. And, I have learned, if I do not take up space in the places I fear I am not enough, there will be no space for me at all.
Christy Tending (she/they) is an activist, writer, and mama living in Oakland, California. Her work has been published or is forthcoming in Catapult, Electric Literature, Permafrost Magazine, Newsweek, and Insider, among many others. Her first book, High Priestess of the Apocalypse, is forthcoming from ELJ Editions. You can learn more about her work at www.christytending.com or follow Christy on Twitter @christytending.
Editor: Krista Stevens
Copy editor: Cheri Lucas Rowlands