Caption the revolution.
The box is too small.
I woke up this morning with the phrase, “The revolution will not be close captioned” running through my mind, scrolling like subtitling at the bottom of my dream. (You might remember the phrase “the revolution will not be televised” from a poem and song by Gil Scott-Heron (1970) and then political movements such as Occupy.) My fear in that dream is that disabled folks are going to be left out of the social justice sea change afoot.
Today I ran a virtual community group. Weekly, we gather and try to create an open, safe container we can all enter with the goal of healing and self/other empowerment. Last meeting, a participant challenged me, complaining that the transcription was enabled in our Zoom meeting. I explained that 1. They could opt-out by simply turning the captions off, and demonstrated which button to press. 2. I do not like to single people out by asking, “Who needs “accommodations” for which “impairments?” Instead I try to make it as accessible to all as what’s currently available allows, and 3. I am one of those people. “Impaired.” And I am tired of opt-in to human rights, participation rights, access rights, and communication rights. They should be default. They should be a given.
Alice Sheppard is a noted choreographer, dancer, wheelchair-user and badass. She said in a workshop that it’s not that I don’t fit the world, but that the world doesn’t fit me. I experience that we haven’t built our world/(-view) with a broad enough spectrum, or a window of acceptability or access broad enough to encompass my personal breadth. I am a big person, a grand-schemer, big thinker, an out-LOUD-and-proud riser, who doesn’t fit my narrowly allotted space. The space parsed out by the capitalist, white-supremacist patriarchal… you know the drill. Now, add “ableist” to that list!
I have been shamed for this “not fitting” and have even internalized this shame about my bigness. I “feel too much,” I “care too much,” I “think too much,” and generally, I am simply “too much.” At times this internalized oppressive ideology has caused me to worry about my impact on others/space. I have projected this onto body concerns. This represents a “sane” response to what is essentially a sick reality. Sizeism, metaphoric and somatic, make it hard to inhabit the body-mind-spirit of a larger-than-life, very intense person as I am.
I have learned to seek out all clinicians in the Health at Every Size (HAES) camp; those who believe that bodies are not wrong, that size-diversity is a fact of human bodily expression, and that one can be healthy (or ill for that matter) in any body size, often invisibly even. The term “overweight” implies there is a Gold-standard Target. A Cut-Off, a Pass/Fail line. The target, we can see, though, is skewed, biased, rigged, shifty, and arbitrary at its core. Overweight? Over what weight?? The narrow scope of “acceptable” is ever-shrinking. Those who are acceptable, elite, (size) privileged just keep getting fewer and therefore more so. Rich-> richer and poor-> poorer. Capitalism plays out on bodies, commodifying bodies, gobbling them up for cocktails at corporate brunches; as insurance’s pre-existing conditions, as “sinfully delicious” brownie bites for those with too little imagination to think of better ways to spend a Hail Mary.
I had the dream just described about opting in and opting out of revolutionary access. My dream revolution was delicious. “Guiltless” chocolate cake (not because it was “low-fat”) but because I was eating chocolate cake and feeling no guilt (as usual); just delight in the taste of Revolution, and at how Zoom was now doing a better job of capturing my yummm sounds, and transcribing into closed captions more faithfully than ever, the sounds of the licking of crumbs from the corners of my revolutionary smile.
But then in my dream, the captions rolling below my rectangular Zoom-womb began to shame me! The words choppily but bitingly lobbed derision at me, “Too messy. Too rich, too intense, demonstrative, outward, too hungry (hungry for what? a thirst for what?). Too big a piece. Too much.”
The world we’ve built doesn’t fit the diverse expression of the human body, sizes, disabilities, mind-states, ways of being, expressing, worshiping, choosing, loving. The only way to opt out of the system’s us/them-ing system of oppression is to
1. Go on a hunger strike. This plan promises the Systems-of-body-terrorism that you indeed don’t fit, and are opting out of the whole shebang. Sadly, the oppressive violence as enacted as hunger is effective in silencing. Those who are excluded by labels like “obese” and “too much,” and other ways of being body-minds in the world are reinforced to be deemed unacceptable, untouchable, and in our war against obesity and larger humans, their bodies rendered hyper-visible, while their personhood is disappeared.
Alternately, 2. Nourish yourself radically. Nourish others, radically. Interdependently, help create spaces, (such as a social worker I’m training to be) and human purveyors of human rights that are built so access needs are not “special needs,” but the intended situation of space.
3. Enable the transcription in every goddamn Zoom meeting you hold. Help those who are distracted by it to turn it off if needed. Caption the revolution.
4. Pardon me my long post. Dare to take up all the space your bodymind needs, craves, wants, and is. We are not too much, too passionate, overweight, or over-quota. The box is simply too small.
Dissonance:
Put your Alt Texts Where Your Fervor Is
My site is not set up to be particularly access friendly. It was built with a deadline squeeze and privileged my eye for visuals over useability. I am less familiar with how to create a site that maximizes access. I privileged “the look” over that which is most often invisible. Privileged. A look at that word sheds some light on the ableist omission. I wrote an apology disclaimer on my site’s first iteration. I intended to study up and go back and remedy. It didn’t happen. Now this: the above dream, the rallying cry, the fervor.
Name-calling is not in keeping with social justice values either, right?
Here is testament to what happens when good intentions meet invisibility and access as “add-on.” I am adding alt texts one image at a time here, and always with every new post! I can, must and am doing better. I am learning in school for Social Work that shaming oneself for not doing the good is neither good for the soul nor good for motivating change for the good.
So here I model the offering of grace. One is not “a Racist” when failing to be the best ally they might be. They are, however, being less than the best ally, and that leaves *space for necessary change.* I am not “an Ableist” when I fail at alt texts. There is, however, *space for change.* My call to myself and others:
Dare to take up space! (as I rallied in my above post.) But please (as I am trying to do now) don’t berate, limit, or label yourself when you don’t. You are a not “a Failure” at empowerment. There is just *space waiting for you,* when you can, when you will, when you do step into it.
The Truth Sinks in s l o w l y . . .
WE, THIRSTS. Harder than I dreamt, standing down. Harder than masking up. Soggy and parched, both/and, alongside.
April, 2021. After a vaccine.
Turning
Return after a plight
who left us turning on
and on. Birthed our best adventure.
To finish on an island full of
laughter. Turning,
Island, isthmus, peninsula
take us home again.
Grow-shed-grow-shed-grow.
My process wants out. It wants to be a website as durational performance. The page here where I wrote about COVID-19 is old news. Thank goodness news has progressed. Sadly, news has progressed.
We have fluxed into the happening of new phenomena. Facts are untethered, minds unhinged. Many of the feelings I wrote about linger, but Twitter, ex-presidential ex-tweets and public opinion move faster than thought can catch up with thumbs. Emojis are flying like flapjacks in short-order. Are lies faster to set down than truths?
My truth gets caught up in my world-view. Vituperations at ablist injustices, the cavalier cavalry, swooping in to sell narcissism and entitlement(s) to the terrified who would sell “invincibility” to calm themselves. Drones, droning (on). My truth interjects. Injects. Daily life with chronic illness makes curtains into blackout blinds. Farthest from invincible. Too close to cavalier. Is this relevant? Am I rambling?
The answer is always yes if I have to ask it. Yes, relevant, yes rambling. Each keeping the other warm, survival, to coexist. New questions emerge. Wordy, winded, worthwhile. Breathe in, out slowness of truth, truth unfit for a tweet. Too-long truth. Non-linear, inconvenient, unflattering, complex, confounding, sound-bitten and still a banquet. Questions from questions. A la Beckett, Fail. Try again. Fail better.
This week I lost access to a life sustaining med for one of my illnesses. A rare disease does not garner a large enough market share to make health profitable. But there are (were) grants to fund research to lift up the value of my life beyond my market value. The med is recalled for a faulty injector, and now the special provision for use of this medicine by life-threatened patients is canceled due to lack of supply. Fail better.
I role-play with a social worker at a disability service organization. I am aware that this help is provided largely by municipal grants, tax expenditures, and appropriations. She says I am my own best advocate. I am aware that I know my body best, am informed about my illnesses and treatment, and have the right to care. Careful care, response-able care, listening and humility and collaboration and communicative and respectful. We practice.
I am swept through triage and into a bed with heart telemetry. “Laura,” your nurse, will be in right away to hook you up and draw your blood. Call button if you need anything. There’s a flag in the chart that says my condition is potentially fatal. Rapidly. That rapid response must be directed “per patient reporting” of non-specific symptoms. In other words, I know my body best. Ask me how I feel.
“Right away” becomes an hour. My body curls up into a ball and I am having trouble thinking and talking. There’s a flag in the chart that says I have mental health diagnoses. “Non-specific” in this medical mind means “per patient report.” My reporting, despite being the primary source, is subject to disbelief. (Nut) Case, Dismissed. Suddenly, because I have an eating disorder and mood lability, I am an unreliable reporter. You don’t ask me how I feel.
The social worker and I practiced, though now I can only eek out words between spasms in my tongue and larynx. You look up my disease on Wikipedia and return after the hour to explain pathophysiology of calcium, magnesium and phosphorous homeostasis to the hysterical neurotic woman in the acute telemetry bed. In slow and condescending terms (“med-splaining,” I call it), you qualify your language with, “that’s just our fancy way of saying…” Fail better.
To appease me, you say you’ll draw some labs “just to be sure.” There’s a blood test I can see you didn’t draw. Without it, the labs are meaningless. Go read Wikipedia more carefully. I would explain it to you in your “fancy words” but by now I am having trouble just breathing. Fatal rapidly. I eek out the name of the missing lab (as coached.) I am the expert in me. I show them my Emergency Care Card. Instructions in Bullet-Points. I give them my Specialist’s Pager On-call.
It is not throat spasms that cut me off from speaking. Most definitively it is you, twirling your pen like a magic trick, in a messy set of scrubs and too-cool neon mesh running shoes. As I give up and give in, I can hear Wikipedia med-splained in monotone as my ears begin to whir with an irregular heart rhythm. Fail better.
I look down at the telemetry coiled like a snake in the bed next to me. It’s not hooked up. The caduceus snake uncoiled. My safety unraveled. I slip out of my skin. They’ve just checked the box for “Anxiety Attack.” The printer near the nursing station begins spitting out page after page extolling the benefits of controlled breathing in preparation for a discharge. My airway is under the attack of tetany and laryngospasm. Fail better.
It’s a sneaky disease. Fluxy happening, phenomena. They come running in after the prelims. Tossing tubing like sticky spaghetti noodles and trying to locate a bag of calcium gluconate that’s emergently needed but never on hand in the ER. They can’t push the Lytes in my thirsty veins fast enough, into the mess of an IV they made. It was pro-forma. It was per-formance. It was never intended for emergency use. My emergency was always expected to be The Neurosis. Frank hysteria, no IV could touch.
I had been coached to tell them specifics about my veins. Incredible, specific challenges. We had practiced. I know myself best meets a cocky and clumsy “I never miss.” Mis-threading leaks the gluconate. As it breaches the river banks it necrotizes the surrounding tissue. I add another path to the map of dead ends. Nobody reads my maps. Fail better.
The endocrine fellow and entourage on call come to round and ogle. She caringly calls the state I arrived at in the ER “a step away from rigor mortis.” I had practiced. I had been coached. I had practiced. Four decades of this body, the key to my map. A decade of practice with this disease. A primary source. Fail better.
April, 2020
Square.Breathing.
“Take a nice deep breath. Breathe. Just breathe.”
-Love, the Respiratorially Privileged
advice on coping. notes on a new normal. musings on being human. extolling regular yoga. prescribing daily meditation.
arguing for structure. in praise of deep, structured breathing.
“In these stressful, unprecedented times…”
The pandemic will change the world. It has, it is. But transformation can be non-linear and non-binary. Like my dear writing Prof. RM said of sex, it’s like slippery friction. Reality seems to slip away, and daily schtuff gets gritty.
Square breathing, a breath control technique meant to calm the system, makes me dizzy. Instead, here are some intentions I’ve set for myself right now in this moment (read “Manifesto fragment du jour”). They center me and calm my system.
Keep playing, not just Working.
Ask yourself what you are hungering for.
Save “I’m sorry” for when you’ve actually hurt someone.
Asking another to join your community of support is a gift you can give.
If you fully embody yourself, you will always be home.
Celebrate getting lost, asking questions, and the grace of awkwardness.
(Remember these are intentions, not edicts, and it’s a joy to be still reaching. It’s “Manifesto Yoga.” 😉
I am not grateful for the pandemic for showing me how to slow down. I did not need to breathe more deeply into my over-sped life. If I contract the Coronavirus I will not likely be breathing deeply anyway, and with pre-existing conditions perhaps worse than average. I’ve found that while helpful to some, Square Breathing will not transform isolation, nor will yoga (nor injected bleach for that matter).
It’s hard to acknowledge, but there is not a rainbow and beaming silver lining in this story. The social justice and racial inequities alone will send devastating ripples for generations of Black Americans. The treatments (or lack) and deaths sickeningly contrast with Goop-watching white women in designer yoga pants sheltering in Zoom.
Inequities hit from close to home and ripple. As a person with a disability, a serious health impairment, I would be far back in line for a ventilator. My parents are seniors, our friends in nursing homes, essential workers at risk, prisoners expendable, healthcare broken, psych beds worse than scarce, as we put corporate interest before public health, risk management, investigational studies, and science.
The pandemic is not fake news, and discrediting the news media has historically been an important step to totalitarian rule. If fighting COVID-19 is a war, we do not have a “wartime president” to unify. Rather, he divides and derides, makes his own fantastical reality, as if on TV. His greed for money and power is poised to give the virus more strength and traction. In short, his actions are helping fight for the other guys, the virus side.
I fear for the vulnerable people of the world, whose voices are votes suppressed, the marginalized, the murdered, the “dispensable.” There is a slippage in our politics and demonstrations, in hate speech and acts of violence against other human beings. How can it be ok that tweets make hate go viral? In my work I often blur humor with serious things. There is no lack of humor about the current socio-political sphere. I’m trying to breathe without spreading viral droplets of hate, allowing deaths to pass unnoticed or allowing hate speech to be met with indifference. My photos aim to anchor from the inside out. In this particular case, I end up looking for the sense in it all, not the sense of humor. Our world is hurting.
At times, even in the creative space I’ve carved and crafted to reach from me to you across distancing, there is not a transformation from hunger to great satisfaction. While my work aims to flesh out, we are experiencing the flat. While I have always aimed for and celebrated the middle greys, I now spend most of my time on binary strings of 0’s and 1’s, and squashed and delimited pixel-boxes.
Psycholinguists say we speak to know we are not alone. I still ask questions and seek the voice. With this Voice I can Hear you more fully! Meanwhile we hurtle along awkwardly. Meanwhile on the delicious futility of this-moment-but-perhaps-not-the-next, together we can advocate, rail and motivate, respond and activate, and feast.
Thank you for spending some playtime with me, and participating in my rich community of support.
Reciprocating right back atcha.
Gwynneth VanLaven