The sunlight seeps soft through the womblike redness of my closed eyelids as I ease into consciousness.
Can I actually feel the crackling dislocations from my elbows to my fingertips, or is it simply familiarity, the recognition that the slabs of meat at the ends of my arms must somehow still belong to me, even if I can’t control them right now? I blink languorously, eyelids plinking together. How can I be more tired waking up than I was before I fell asleep?
I say the names of the bones to myself in a chanted catechism as I will myself to sit up. Lunate, scaphoid, triquetral. My tongue tap dances along the backs of my teeth and I wriggle against the pillow without using my hands. Capitate, pisiform, hamate. Once steady, I interlace my fingers, stabilize my left hand with my right, then pull and twist simultaneously. The movement is rote memory. Lightning bolt bright explosions implode within my hand every single goddamn time. There is a machine-gun chatter of bone against bone and I don’t realize I’m grinding my jaw and holding my breath with the hurt until I have to unclench and inhale. The sound of re-location echoes in my room — all of Oakland must be able hear it — before I switch, bracing right hand against left this time. I pull, twist, and my nerves scream in protest as the blood flows back into my hand. Each pale finger bursts into bright crimson bloom, tributaries abruptly flooded with color and the feeling that inevitably follows. There is an electric tingle like brushing wet skin against a light socket as I pop my thumbs back into place, then encircle my wrists and watch my ulna and radius forcibly realign. My elbows follow suit obediently, eventually, and I am grateful they don’t require more coaxing.
Once my hands are back together, I plant them on the sheets and twist my torso. Each vertebrae jumps back into place, an answering cacophony to the call of my hands. It feels like stacking books on a shelf until their spines are carefully aligned with the edge.
Eventually, slowly, surely, I sit up fully. I slip my fingertips beneath my scapula and crunch my ribs back in place. I roll my head in tiny circles until my neck no longer creaks. My ankles pop like bubble wrap and if there weren’t two screws in my left foot, anchoring my toes in place, they might add rifle-shot cracks to the discordant symphony of my skeleton. I swing my legs over the edge of the bed and shuffle into my slippers.
I keep the pain pills in the second drawer on the left-hand side of the bathroom sink, through the bedroom door and down the hall on the right. If they sat on my bedside table, right there beside me, within easy reach (once my hands were realigned), I might never make it off the mattress. The rattle of round pills against child-proof plastic is sweet harmony, a chorus of angels whispering against the seashell curve of my ear. They fall into the palm of my hand, sweet manna from heaven, and dissolve bitterly, beautifully beneath my tongue.
One of my earliest memories is as a toddler in the hospital, and the razorblade burn as they snaked a catheter up into me to help empty my bladder.
The pain of that urinary tract infection looks like bright, white, focused light and the weight of my Mama holding me as I screamed. The hospital is not an uncommon setting for my childhood memories, because there are so many other surgeries: a broken collarbone, stitches striped up my forehead in a scar that makes me self-conscious as a teenager, eye surgery after being declared legally blind. Scars remain in the places where my memory has evaporated like pools of rubbing alcohol. I am too young to have so many injuries, and the doctors label my mother negligent while the nurses cluck their tongues when she brings me in yet again. She is not a reckless parent; I am simply sick and undiagnosed. I will remain that way for decades.
I grow older, and the hospitals are replaced by memories of rooms full of fellow elementary school students lined up in neat rows as we stood, backs against the walls, to be tested for scoliosis. I knew that my bones were curved, sinuous and slippery, because the doctors had already told us. I welcomed the escape from the tedium of our regular classroom routine and thought little more of a test that told me nothing new. It didn’t hurt yet — not more than anything else I’d been through, anyways — so I didn’t have to worry.
I grow older still, and my middle school years are defined by the hissing suck of the refrigerator’s rubber seal as I slip the protective plastic case containing the glass vial of human growth hormone and its syringe inside the artificial chill. Sleepovers meant an inescapable conversation with someone’s mom to explain why I was bringing needles over to spend the night. Sometimes I would sneak into the bathroom to inject the drug into my stomach or my hips; sometimes my friends watched the process, rapt and only slightly disgusted. The endocrinologist asked me questions about my absent period that made me squirm. His queries made me compare myself to friends who had already begun puberty, as if the flat line of my chest and tiny stature weren’t already stark reminder of how far behind my body lagged. Eventually, I refused to see him again, missing out on adding inches to my stature as the hormonal help ended.
In high school, I arch my back against the hard metal of the chair attached to the desks, feeling the deep ache in the curve of my spine. Some days I’d skip homeroom and drive my emerald minivan across the bridge until I found an expansive parking lot where I could sleep in the backseat without being noticed. Cool breezes fluttered in from the cracked back windows but none of it made the hurt go away. When I talk to a doctor about feeling so low, I don’t mention the pain — no one has connected any of the points into a cohesive constellation yet. He points out the pin on my lapel, a round button proclaiming my love of The Cure, and asks me if I take a lot of MDMA, listening to a band like that. I laugh in his face and never come back.
In college, the shame of calling out of work yet again burns bright. I wonder if the heavy plastic trays of food I hoist onto my shoulders were the reason why my whole body sometimes protested so vehemently I couldn’t even get out of bed. I feverishly save my tips, cycling through every brand of mattress topper available, but none seem to help. I email my professors to tell them I am unable to move from my pillows, much less sit up straight behind the wheel of a car, which means there’s no way I can drive to campus for class. Sometimes I drag myself to the doctor and beg for any kind of answer. Instead, they recommend I see a chiropractor and write me a note that excuses me from class.
After college, as a bonafide adult, I revisit my childhood spent in the emergency room. One night, I check myself in after two weeks of hitching gasps on dislocated ribs. I beg the intake nurse to help me slide them back into place, long enough so I can take a deep breath. Breathing feels like sucking oxygen through a blocked straw. Instead, two nurses and a doctor corner me. They proffer pamphlets that explain the link between narcotics and addiction; they encourage me to get myself clean. I tell them I don’t want narcotics, but they’re convinced they have me figured out. On the way out, one finally touches me and exclaims in surprise when he feels my rib cage shift. I sob painfully in the car as I drive home.
The diagnoses that came first were the ones that are always applied to young humans with uteruses who complain of inexplicable pain.
My medical record fills with words like conversion disorder, and hysteria, and hypochondria. Someone as young as me shouldn’t — realistically couldn’t — possibly hurt this much. The doctors can’t see my pain, which means they can’t measure it, either; obviously it must not actually exist at all. A primary care doctor finally refers me to a neurologist so he can wash his hands clean of me, and this doctor grants me the gift of a word that seems to fit: hypermobility. He shrugs, tells me there’s nothing else he can do for me. He doesn’t realize the benediction he has offered in the form of a diagnosis.
The salt of my tears cut channels through the foundation I patted on my cheeks to cover up the deep, dark half-moons of exhaustion beneath my eyes. I frantically search for more information in my ear, scrolling with one subluxed finger through pages describing collagen disorders. I see myself reflected in the words, each sentence strung together like pearls I could drape around myself to describe the mystery of my hurt. It is like that perfect, tiny moment of ecstasy when a word you couldn’t think of for days finally pops into your head unbidden. My heartbeat rings out like a hammer against steel, my bones reinforced with the titanium resolution of an almost-answer. I am suddenly dogged enough to fight harder, brighter, bolder for that which I now know to be true about myself and about my body. I am not quite there, but I am close.
I am twenty-six years old and sitting in the bright primary colors of the pediatric ward in a hospital basement with no reception when a young geneticist with olive skin approaches. He wears a crisp white coat and I am distracted by the flickering sparkle of a tiny diamond in his earlobe as he diagnoses me, finally and conclusively, with hypermobile Ehlers-Danlos Syndrome (hEDS), a collagen disorder that can cause severe implications across the entire body and every system therein. He gives me a reason for my UTIs as a toddler, my eye surgery, the broken bones and random joint dislocations, the pituitary growth hormone deficiency, the unrelenting pain.
Along with the diagnosis comes the reality of my existence, combined with a slew of co-morbidities: dysautonomia, Complex Regional Pain Syndrome, facet joint disease, endometriosis, fibroids, dysphagia. There is a fatal flaw in my DNA and no cure for any of it; there is barely medical recognition, much less functional literature approaching a fix. The hEDS comes with an inescapable promise of more surgeries, and unavoidable complications from those surgeries, too. My jaw dislocates and stays out for 16 weeks before I am wheeled into the cool brightness of an operating room. My big toe dislocates and is eventually forced back into place with two screws. We ablate my nerves with radiofrequencies to try and deaden the sensation of pain and inject lidocaine into my muscles to try and prevent their uncontrollable spasms.
A golf-ball sized cyst encroaches onto my right ovary and a fibroid invades my fallopian tube. A surgeon removes my reproductive organs, accidentally perforating the thin and friable tissue of my damaged uterus during the procedure. Every time a surgeon operates on my body, I ask them to take pictures of the places inside me that are broken. I clutch the images of my snarled insides to my heart as if they were pages ripped from a holy book. After years of being told it was all in my head, concrete proof of my pain’s existence is precious and perfect and makes me cry.
I become someone who is hyper-aware of my existence as a human with a body in constant rebellion. My body may be myself, but it is not my own.
My diagnosis is new when a well-meaning, nondisabled friend tells me that I’m going to “think myself into a wheelchair” if I keep talking about eventually needing one, and I can’t stop imagining her face as I look my doctor in the eye and tell him I’m not leaving his office until he refers me to a specialist to be fitted for one.
I’ve been asking to see a specialist now for months, unable to visit art museums or see concerts without my hips and knees and ankles dislocating, or my eyes blurring with the grainy darkness of near-syncope. Even the stout wooden handle of my cane, adopted as near-permanent after foot surgery, cannot keep me upright. He tells me that he is concerned I will become “too reliant” on the wheelchair, but he finally stops arguing when he sees the resolute set of my jaw that day.
Six months later, I am gripping the handrims of my new wheelchair. My cheeks already hurt from the uncontrollable grin spread across my face, but I cannot stop smiling. Even in the small space of the specialist’s office, I zip from corner to corner and back again, learning to maneuver my body in its new vehicle. I gave up long distance running long ago, after finally accepting that my ankles would never stop dislocating with each slamming step on concrete or treadmill, but have craved the endorphin rush of a runner’s high ever since. The speed and sure agility of my wheelchair provide the surety of that high.
The inaccessibility of the world serves as a sobering reminder of my limitations, however. It is not moving through the world on wheels that slows me down; I am faster, spry and more lithesome perched in my seat than I have been for years on my feet. No, it is the world itself. It is the sidewalks without curb cuts, the doors without automatic openers, the bathroom stalls too small to fit my chair inside, the entrances with stairs and the ramps around back (if they exist at all). I go to the store and can’t navigate between the too-small aisles; I go to the movies and dislocate my neck in the accessible seating (after asking nondisabled people to move); I go to restaurants and stare at the wood of the bar as my friends tower on high-top tables above me.
I see the same inaccessibility reflected in the ableism of the sneering faces of people who tell me that requesting accessibility is asking for extra privileges, who illegally park in accessible spots and curse at me when I ask them to move, who laugh in my face and tell me my life isn’t worth living because I am diseased, disabled, and therefore somehow lesser, despite brokering a tentative peace with my unpredictable existence.
After the bitter, blissful pill melts beneath my tongue, my entire body is suffused with a gentle tamping down of the loud static screaming of nerves on fire and bones dislocated from the mere act of dreaming.
I step into the shower and turn away from the water, letting it run down my back until the bee sting prickling from my winged scapula dulls to a quiet roar.
I towel off, careful to dry my scarred left foot with only a featherlight patting of the towel, turning my face in the mirror to see the red scar that climbs up my jaw and into my hairline. So much of my body feels alien to me, like the swathes of skin that remain perpetually numb post-surgery, or a foot so painful that even a sheet resting on it is unbearable agony. My body, my diagnosis, means I am an intrepid adventurer exploring an undiscovered planet, with little warnings as to what local flora and fauna might hurt me — or how, but I am learning.
I wing my eyeliner out from my eyes and darken my blonde eyelashes with mascara. I outline my lips in vibrant crimson, carefully tracing the jagged contours of my upper lip and the u-shaped curve swipe of my lower. I work carefully until I am fiercely plumed in war paint and warning signs, because makeup is one of the few ways I know to seize control of my mercurial meatcage. I pull on clothes and despite the siren-song calling of my bed, begging for my return, I head out into the world prepared to fight: the pain from my body; against a world demanding my erasure for the sin of not fitting in; and for accessibility, deserved, promised, but not yet guaranteed. I slip an extra pain pill into my purse and face the world, where every act of my existence becomes an act of resistance by simple virtue of being in my meatcage.
You Have a Body features personal essays on the the ways we reconcile our physical forms with our identities. This series explores how our bodies sometimes disagree with us, how the world sometimes disagrees with our bodies, and how we attempt to accept that dissonance.
I’m twenty-seven years old and have never had a “good night’s sleep.”
From childhood through early adulthood, I struggled to fall asleep at night and fought to stay awake during the day. At its most extreme, my body would demand twelve-hour sleep-wake cycles: refusing to wake up until 3 p.m. and finally caving in to sleep at 3 a.m. Whether it was blamed on technology, caffeine, or another culprit, family, friends, teachers, and medical providers were convinced that it was me choosing to be this way. Part of me believed it, too. TV shows and movies reinforced these stereotypes in my mind. Yet, part of me found flaws in their accusations. The spontaneous bursts of nocturnal energy started long before I ever took a sip of soda or owned a cell phone.
When I turned twenty-three, I started to notice a shift: I began to never feel completely awake. Other chronic illnesses had prevented me from fulfilling my longtime dream of volunteering overseas for the Peace Corps so I did the next best thing: work with international students at a university. My body can’t handle humid tropics or arid deserts but a rural college town would be smooth sailing (or so I thought).
On one of my first days, I attended an early morning meeting with staff from another department. We started off with introductions and I enthusiastically scribbled each person’s details in my notebook, eager to foster this new partnership. Then I felt it. Unbearable sleepiness crept down my body, weighing my head and eyelids down like tar. I wasn’t sure what was worse: “admitting defeat” by putting my head down into my arms on the table to sleep, or enduring the awkward ebb-and-flow of my head with eyes rolled back and mouth hanging open. I figured that at least in the second case, I was somewhat upright and “attentive” (though probably appearing more like a propped-up zombie than a well-meaning professional).
This was my wake-up call. I knew something was definitely wrong. It’s hard enough to be taken seriously in the workplace as a woman of color spawned in the 90s. I am fueled to surpass expectations by every click-baity gripe about millennials on my news feed, every microaggression I’ve swallowed behind a forced smile. Embarrassment, frustration, and desperation drove me to seek answers from various doctors and test quirky tips from online listicles. I had cut out caffeine due to the onset of an unrelated heart condition. I tried wearing orange-tinted glasses to block out wakefulness-promoting blue light from electronics (but mostly just made me feel like a rebel pilot from Star Wars). Nothing worked. I would be so tired that the times that I could manage to call or email in to my supervisor to request a sick day, my slurred speech and nonsensical text led them to jokingly say that I sounded drunk. Coincidentally, the onset of my chronic illnesses had led me to become intolerant of both caffeine and alcohol.
After multiple misdiagnoses, two overnight sleep studies, two afternoon nap studies, and twenty-three years of self-doubt, I was diagnosed with narcolepsy. It took an average of seven minutes for me to fall asleep during the nap series; in one nap, I fell asleep after just 12 seconds! I had also experienced early rapid eye movement (REM) sleep in two of the nap sessions: one after 5.5 minutes and another after just four. To put this into perspective, it typically takes ninety minutes for a person to reach REM sleep after sleep onset.
My narcolepsy diagnosis was a double-edged sword. It was validating because I finally had “proof,” albeit just a medical term, to validate my struggles with sleep to those that had doubted me. I could get a doctor’s note to request accommodations at work. Yet, I soon realized that a simple diagnosis wouldn’t magically make the world empathize with me or work with my new lifestyle. I remember being stuck on the word “narcolepsy” when my doctor first diagnosed me. The only times I had heard it before were in comedic situations. A teenager face-planting into their bowl of Captain Crunch before school. A person slumping down into their chair mid-conversation with a friend. It was more of an old wives’ tale than a potential reality. I can see the gears turning in people’s heads when I tell them that I have narcolepsy. I feel like it’s a word that most folks have heard but never really processed. Narcolepsy is more complex than extreme bouts of sleep and people with narcolepsy are certainly more than running gags.
Sleep can be emotionally and physically draining for people like me. Some aspects of sleep can even be traumatizing. Recurrent, vivid nightmares throughout the night have left me feeling paranoid and jumpy well into hours after waking up for the day. Sleep paralysis is another symptom straight out of a horror film: I’m awake and blinking but I can’t move my body, speak, or breathe. Some folks see demons or hear scary voices when experiencing sleep paralysis. The unfortunate reality is that I have an unrequited love with sleep. I crave it constantly but only receive fractured, unrefreshing sleep in return.
Looking back on my life, I realized how little sleep hygiene was encouraged outside of family and doctors reprimanding me for my personal issues. In elementary school, we had school-wide “fun run” fundraisers and jump-rope competitions. Messaging on milk cartons, cereal boxes, and snacks emphasized each respective product’s contribution to a “balanced diet.” National campaigns promote physical exercise and conscious eating habits to people of various ages and backgrounds. Why doesn’t sleep carry that same weight? Would I have had a quicker, smoother route to diagnosis, treatment, and accommodations with more community education and societal advocacy? Would I have been spared from years of feeling like a delusional, worthless burden?
I had struggled with depression and anxiety since adolescence. At first, I blamed my chronic illnesses for further aggravating my mental illnesses. I resented my nervous system for its inability to function properly, especially at the so-called prime of my life. I wasn’t one to say “no” to adventure. I wasn’t one to flake out on plans. I wasn’t one to show up late to work. I had become critical of myself for becoming the antithesis of the values I grew up with.
As I became more involved with disability rights, I realized that my embarrassment and frustration stemmed from the ableist structures and perspectives I encountered and internalized. Despite being regularly recognized for my initiative, efficiency, and innovation at work, I would be patronized for showing up thirty minutes late or sleeping at my desk during my lunch breaks. I hadn’t known about my rights to reasonable accommodations like flex time, restructured work hours, or nap breaks until I did my own research years later. Family would chastise me for spending family gatherings hidden away sleeping on a couch, rather than acknowledging how much effort it took for me to get ready, show up, and say my rounds of sincere “hellos” in the first place.
Friendships were the most painful gripes. Long-time friends grew uncomfortable with the new “fine print” that came with hanging out. If we went to a concert, I’d need reserved seating (no more mosh pits for me). If we went to a bar or coffee shop, I’d need to stick with water. If we planned a day of sightseeing, I’d need to schedule nap breaks in the afternoon. I’d still be excited to spend time together but these minor accommodations were deemed “boring” or “inconvenient.” If you think about it, many of the things our culture views as “professional” or otherwise “socially acceptable” are unnecessary, ableist, and classist. If there’s one positive aspect of having chronic illnesses, it’s that they’ve allowed me to become better at filtering out fleeting friends, silly “rules,” and shallow activities to prioritize the people, values, and hobbies that are worth my limited waking hours and energy.
Since the onset of narcolepsy, I’ve devoted more time to self-discovery and pursuing what fits my new lifestyle. I used to love the thrill of the outdoors, especially travelling to national parks across the U.S. Of all of the travels I’ve had, it’s the natural scenic areas that are most cherished and ingrained in my memory: from the humbling, giant sequoias of Muir Woods to the tranquil, almost surreal lotus paddies of Cambodia. It’s challenging for me to leave my house outside of work obligations these days because of my chronic illnesses. However, I’ve found that I can bring the outdoors in by tending to houseplants. Many people admire plants for their visual appeal or alleged purifying qualities. I appreciate them for their diversity and tenacity. Contrary to popular belief, many plants can be rehabilitated and eventually flourish with the right care and environment. You’ll often see mushy succulents, ratty ferns, and droopy begonias all bunched together on the same rack in the garden section of a big box store. You’d be surprised how many of those sad, worn-out plants on the sale rack can actually be salvaged.
Like humans, plants are not one size fits all. Even within the same family, different plants can have different needs. If you picture someone taking care of a houseplant, the image that pops into most people’s mind is someone watering it and maybe placing it near a sunny window. Like diet and exercise for humans, there tends to be a limited focus on water and light. The appreciation and corresponding care for each plant’s unique light, water, soil, aeration, humidity, and feeding needs allows them to thrive. It may be different or a bit more work than what you’re used to but there’s nothing like spotting a tiny new growth on a plant that you put effort into. This observation helps me push through times where I feel like I’m being “dramatic,” “inconvenient,” or “selfish” due to my narcolepsy symptoms. I can thrive, as long as my basic needs (however unique they may be) are met and the environment I’m in is conducive to my growth. People with narcolepsy can achieve great things and we need our families, friends, schools, workplaces, and communities to recognize and support that potential. Wakefulness does not equal worth.
You Have a Body features personal essays on the the ways we reconcile our physical forms with our identities. This series explores how our bodies sometimes disagree with us, how the world sometimes disagrees with our bodies, and how we attempt to accept that dissonance.
It starts from my center, white-hot behind my ribcage, a supernova replacing my heart. It runs through my veins, fills my fingertips with fire, boils over and spews from my mouth with the savage strength of an atomic bomb explosion levelling everything before me. My vision dims, and the pulsating thrum of my blood running molten is so loud I can’t hear myself think. I am a feral wildling, bestial and brute, at the mercy of my rage run rampant until I eventually fall limp, spent and exhausted by the sheer ferocity of myself.
In the weary lethargy of recovery, I imagine the way my anger looks before it explodes out of me. It is twined tightly around the double helices of my DNA, broken glass shards glittering, embedded deeply as the needle-points of foxtails. It cannot be pried out with a scalpel. My anger is impassive, a cold and calculating causal antecedent of epigenetics passed down through generations. It was a gift from my mother, passed down from her father, passed down from his mother. It was a benefaction that would have been better left abandoned generations back.
There were good reasons for the anger: the marital pact that made my great-grandmother into a slave, so far from a beloved wife. The childhood abuse inflicted by someone my grandfather trusted. The way my mother’s childhood was darkened by her father’s addiction and alcoholism, because that’s what secrets writhe and twist into when left unshared. My mom has done—is doing—her damndest to outrun the promise of those genetics: by escaping to the other side of the country, by interrogating its existence in therapy, by looking it in the eye and not backing down. In many ways she has succeeded, she continues to succeed. But sometimes, especially when I was a teenager—when she felt frightened, backed against a wall, left with only bared teeth and claws for protection—the anger coiled at the base of her spine reared its head and hissed at me, her eldest child, in warning.
(I suspect that even if she had somehow been able to remain passive through the entirety of my childhood, a near impossibility with a headstrong child like me, I would have come into it regardless. My anger, after all, is my promised birthright, and you cannot run away from the blood pumping through your veins.)
At first, the anger was merely a flash, a starshine burst streaking across the sky before disappearing. What did I have to really be angry about at thirteen? But as I got older, life’s cruelties and complications stoked the fires of my rage. My body began to ache, my spine twisted and curling into itself for reasons no doctors could explain. Before I graduated high school, I gave my heart to men who betrayed me, who left me to handle STIs and abortions alone. Before I graduated college, I married a man who punished me for every single thing he hated about himself, using his words and his hands to illustrate his loathing. I met his fury with my own silver-steel, and our anger clashed like blades in a sword fight.
After years, I finally escaped him and floundered, searching for meaning in my work as a mortician—my dream career as a child, a place where I could make sense out of the pain of others while ignoring my own. I struggled to understand why there was so much hurt in my life, and when I couldn’t find answers I simply simmered in the familiar warmth of my own anger. At least that was something I could understand—unlike my spine, which still stymied me and every doctor I saw. Then my jaw began to dislocate, and not even the cold calculations of a surgical suite could realign my teeth into orderly rows like headstones. My left foot followed, a forest fire burning up my shin when I stood straight and tall for funeral services. They twisted two screws into my ankle, but still my bones escaped. Eventually, finally, someone gave a name to my agony and diagnosed me with an incurable, rare degenerative disease; that was only a relief until my diagnosis stole away my deathcare work and my fertility and my ability to heal even the smallest of wounds. Eventually, someone with letters abbreviated at the end of their name added PTSD to my chart.
(How do you carefully paraphrase the traumas of your life? Stack them up and count them like laundry quarters, tarnished and dulled instead of silver-shiny and new? How cut and dry they sound, written down on paper, carefully constructed around proper syntax and the right punctuation.)
I was not yet in my third decade, yet my life had already offered a litany of inescapable hurts. There were good reasons for my anger. I’d lived through enough to last lifetimes. It was unfair and overwhelming and exhausting, but mostly it just made me mad. Some days my anger was so great that I worried I would explode and immolate everyone else around me; other days I worried (perhaps, more accurately, I wished) that I would burn myself down instead. I lived and breathed anger because it was what I had been taught, what my mother had known, what her father had imparted. I spewed fire and smoke and frightened everyone around me.
There was never a silver-screen moment where someone forced me to decide on doing and being better before I could move on to something better, too. There was simply the lived reality of recognizing that my life would be what it would be, and so far it had mostly been hard. I could continue waving the torch of familial fury with all the reasons life had granted me to be angry, I could let my anger smolder and scorch until it destroyed me, or I could try to change the cycle.
A conscious shift required understanding what I wanted to transform my anger into, and what I wanted most was whatever was its exact opposite. What was the light to the darkness of my rage? What was the softness to the hardness of my hurt? If anger was the desire to annihilate and decimate, to leave behind only ashes and then to salt and raze even those until nothing green could grow, then kindness must be the diametric opposition to my wrath. Kindness was the desire to build up, to recreate. It was gentleness and sympathy, affection and loving softness. It was careful nurturing and encouragement until you’d coaxed something verdant from the ground and surrounded yourself with lush new growth.
And so I began to focus my anger into sharp, precision-honed kindness. I wielded this sharp kindness like a weapon in the face of a cold world and a brutality-filled life. Before, in moments where I might normally detonate into a frenzied grenade of ire, I channeled my outrage into deliberate softness instead. I tamped down my furor, consolidating it from unfiltered lividity into something more useful. I packed away my anger, carefully folded it and placed it on the highest shelf of my heart, and used every opportunity I could to purposefully choose kindness instead.
This conscious shift put me in a new position of control and granted me a strength that anger never had. Anger had been pure powerlessness, on my knees at the mercy of my own uncontrollable rage. Kindness was a choice, a mastery of regulation that didn’t leave me cursing myself for how I’d ended up hurting others. Being kind meant not having to back down, because no one could point out my kindness as a character flaw or inability to restrain myself. No one could tell me that I’d lost myself in the impotence of my own vexation. Being kind meant pausing, breathing, and focusing. It was (and is) a skill; it requires practice to hone and properly wield, and still, I do not always succeed.
The world remains cruel. My life is still hard, and my body will always betray me. I cannot control other people—the way that they may treat me and the possible indignities of their indifference. But I can always control myself. Choosing to be kind in the face of the world’s cruelties requires a colossal amount of strength, but adjusting the warp and weft of my anger into something calmly beautiful has been life-changing.
My anger is now my kindness, and my kindness is my strength.
Almost every time I see a new justice initiative, I repeat the same cycle: I scan the list of what justice means to the organizers.
Time and time again, I see justice declared for people of color, immigrants, members of the LGBTQ community, sexual assault survivors, and more. Justice is declared as a need for women, but not often for women with disabilities like me. A fire rises in me. I tweet something snarky. I delete it. I try again. I’m disappointed, but I feel let down so often that I can’t bear the weight of that discouragement. Anger is far more comfortable.
Disabled people are so marginalized that when marginalized groups gather, we’re still on the margins. Even in the Christian Bible, when disabled people enter the scene, they’re on the edges. Sure, those men lowered their disabled friend through a roof to see Jesus, but most sermons I’ve heard preached about that passage focus on the friends, not the man on the mat. I took notice. Either hide your disabilities, I learned implicitly, or stay in your place on the edges.
I’ve lived with scars, internal and external, and injuries to my knees and spine since I was a child. Unlike my daughter with cerebral palsy and son with autism, I wasn’t born that way. Childhood abuse made me disabled. Because no one told me that I had been innocent, I thought my disabilities were my fault. I made him mad, but I wasn’t ever allowed to be mad about it. I didn’t say no when he came to my bed in the middle of the night. I should have been tougher, so I didn’t break at their will.
I believed all of those lies. I believed I deserved my limp. I believed I was still bound by the family rules that whispered, Don’t say or do anything to make the family look bad. The shame I never should have carried and my societal observations about where disabled people belonged taught me to play small, to blend in, to pretend nothing was different about my body.
That’s not an option for every disabled person, but it was for me. I’m privileged not only in that way but also by being in majority culture as a white, straight, cisgender, U.S.-born, college-educated woman. Now my surgical scars and intermittent use of canes, rollators, and wheelchairs all give me away as being disabled, but I still live with privilege even in the disability community.
In the past few years, I’ve learned to wield that privilege to break the rules. I can be angry when society says disabled people don’t even get accessibility to that emotion. No, I won’t stay where I’m put. No, I won’t apologize when I request reasonable accommodations. No, I won’t applaud someone for finally treating disabled people like we’re fully human, because that’s simply what we deserve.
And no, I won’t hold my tongue or check my anger when your movement declares justice for all but only advocates for abled people. Your justice is unjust if disabled people aren’t included. We know our place, and it isn’t on the margins of your movement. No, we belong, and we’ll fight to be seen.
And? Our deaths wouldn’t be noticed by many of you. How do I know that? Because historically they haven’t been. We’re conspicuous when we show up, but few fellow social justice warriors notice when we’re absent. I’m not even mad about that anymore, just profoundly sad. My anger at being ignored has faded into grief.
ADAPT – a disability rights organization formed in the 1980s – is why we have wheelchair lifts on buses. They refused to stay in their societally-assigned places. They were angry. Protests involved physically blocking buses with their wheelchairs or crawling up the stairs of those buses as bodily demonstrations of how transportation access didn’t yet include us. The Americans with Disabilities Act (ADA) passed in 1990, largely due to the efforts and advocacy and anger of ADAPT members.
In the past couple of years, ADAPT protestors are the ones you’ve probably seen in the news, their wrists often cuffed behind the backs of their wheelchairs and their bodies assaulted as they’re forcibly removed from government buildings. They’ve been fighting for healthcare, not just for disabled people, but for everyone.
If you have access to healthcare, thank ADAPT for what they did with their anger on your behalf. (Also, follow ADAPT on Twitter and elsewhere. Maybe you didn’t know anything about them until 2017. It’s time to remedy that.)
Black Lives Matter, Including Disabled Ones
My three must-follow recommendations of disabled black women are Vilissa Thompson (creator of #DisabilityTooWhite), Keah Brown (creator of #DisabledandCute), and Imani Barbarin (creator of #DisTheOscars). On October 21, 2018, Barbarin tweeted, “Imma get in trouble for this, but IDGAF: Black people, your advocacy MUST include disabled black people. While you may think that we convey weakness and that disabled is the one thing we can’t afford to be, because of medical racism, disabled is the BLACKEST thing you can be.”
As I read her thread, I ventured over to the “what we believe” page of Black Lives Matter, remembering some subgroups of black lives were specifically highlighted there. Queer lives and trans lives are, as are women. Disability only appears in a list declaring that all black lives matter, but no specific action steps or commitments are named to demonstrate being for the lives of black disabled women like Thompson, Brown, and Barbarin. (For additional reading on this topic, Thompson wrote this excellent piece about disability solidary and black lives for the Huffington Post two years ago.)
I’m not here to dismiss #BlackLivesMatter. I’m all in. I want to champion ways in which the intersection of disability and race is done well, like this website of resources for students who are young, disabled, black, and proud, created by the HBCU Disability Consortium. Yet Luticha Doucette’s words are true, published last year in the New York Times: “Black Lives Matter has come under much deserved criticism by black and Latinx disability rights activists for lack of inclusion in their ‘woke’ spaces. We cannot be fully woke if we refuse to acknowledge our disabled brothers and sisters.”
To close out her Twitter thread, Barbarin declared, “We are a huge part of the black community because lack of access to healthcare in addition to local factors and the presence of discrimination while in doctors’ care means that we often aren’t believed about our symptoms or bodies until they become more serious diagnoses. So, get it together, we aren’t going anywhere. We need to be included. Period.”
For more of Barbarin’s insights on this issue, including a link at the end to donate to her Patreon, see this must-read piece: Black People Don’t Have to Inherit Their Ableism. It’s well-written but she also provides the source of where this ableism among the black community in the U.S. originated: white supremacy. It’s all connected when we strive for justice. And I can write this, as a white disabled woman, without being dismissed as an angry black woman, once again because of white supremacy.
Including Disabled Narratives in the #MeToo Movement
The National Council on Disability released a report in January 2018 titled “Not on the Radar: Sexual Assault of College Students with Disabilities.” In it, they cite research showing that 31.6% of disabled female college students were victims of sexual assault, compared to 18.4% of their non-disabled peers. Federal studies on campus sexual assault from the Department of Justice’s Office on Violence Against Women and the National Institute of Justice don’t even include disability as a demographic, while they do include race and sexuality. Furthermore, many college-based sexual violence education and prevention programs are not accessible to disabled students and are staffed by individuals with little to no training about disability.
This should make you angry. It makes me furious.
As Anna Wafula Strike, a British Paralympic wheelchair racer born in Kenya, wrote earlier this year, “As disabled women, we are constantly having to validate our existence, which is frustrating and exhausting. It often feels as though every box is ticked while we, disabled women, are left blank.”
The Women’s March Wasn’t Designed to Be Inclusive
I haven’t been able to attend a Women’s March event because of my disabilities, but I would have shown up if I could have… even though their platform has consistently excluded or insulted women with disabilities. Mia Ives-Rublee is a disabled woman and an Asian adoptee who reached out to the Women’s March organizers to make sure the 2017 event would be accessible. That question led to her becoming the leader of the Disability Caucus for the march.
This is common. When disability hasn’t been considered and a disabled person asks about inclusion, the answer is far too often an acknowledgment that nothing is in place and an invitation for the question-asker to take the lead. I’m grateful Ives-Rublee had the skills and desire for the role (and continues to lead the way), but I’m still angry that neither their platform or plans included us until we pointed that out.
My anger threatened to boil over when the logistics leader for the Women’s March boasted that the event would be “the largest assembly of people with disabilities in U.S. history.” I don’t love how he spun a movement that didn’t include us with their platform to be a disability-focused event, but I don’t even know if he was right about his facts. The annals of U.S. history include very little about disability, after all. Even when they do, the focus is usually on disabled men – with language like “the fathers of the ADA” – as pointed out by disabled women leaders Rebecca Cokley and Rebecca Vallas in this interview.
We don’t know because we aren’t taught. We’re not included even in lessons about diversity, as the diversity of ability and disability is usually absent from that education. I learned about the art of Frida Kahlo in a grade school lesson about diversity, but I didn’t learn about her physical disability and wheelchair use until I dug into disability studies.
I also remember learning about Helen Keller in school. The last detail taught, though, was when she learned to say water. I can still picture the movie we watched in class, with a cute white actress saying “wa-wa” over and over.
I don’t remember learning anything about her life after that. I haven’t forgotten; it simply wasn’t taught. History rewrote Keller’s story as one in which she, a disabled woman, stayed in her place on the margins. In reality, though, she grew up to be a socialist activist, included on a list of communists by the FBI in 1949. I wasn’t taught that because it didn’t fit with the narrative in which people with disabilities stayed in the shadows.
News flash: We aren’t in the shadows anymore. We’re here. We’re angry. We’re not going away.
And when you say you stand for justice, we’ll be there, holding you accountable to include us or admit that your brand of justice isn’t just at all.
“We are constantly being told not to be angry. As a black woman especially, I hear it from all corners. To be angry is to give in to stereotypes of the shrill feminist, the mad black woman. To be angry is to trade intellect for emotion. To be angry is to be irrational and violent. To be angry is to be like them. To be angry is to lose. But none of that is true. I am angry because I love. I am angry because what I love is being harmed. I know why my people matter, why the environment matters, why human rights matter, why justice matters. And I know that this all deserves love. I know that it deserves protection. And I know who is fighting to deny it what it deserves. I know that when that which we love is being harmed — to not be angry would be unconscionable. […]
What if we took that anger beyond the internet? What if we took it into the streets more than once every two years? Into our boycotts? Into our strikes? Into the voting booth? What if we took that anger to our city council meetings? What if we took it to their campaign events and press conferences? What if we took it to our school boards and our workplaces? What if we took all this anger born of righteous love and aimed it?”
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