In this piece I’m going to be sharing a few principles and movements that have served me well in my time navigating the world as a neurodivergent person. Neurodivergence refers to variations in the human mind — variations in sociability, learning, mood, sensory processing, cognition, behavior. Many people are leaning towards this word “neurodivergent” and away from the word “autistic”, but I don’t mind what you call me, so long as you’re attentive. Listening is our primary task these days.
“Because we are not in a perfect world yet,” she says, “we must learn to defend ourselves.” I always hear it as “our Selves,” with a big capital S. “Because we are not in a perfect world yet.” Good—that she used the word “yet.” The foundations of transit planning and medicine rest on our trust in using, and continuing to use, that word. I wonder if she sees me that way: a stagnant summer with a pending “yet,” the husk of a filbert not yet become. To write her name, her full real name, would be to learn the word for safety, serenity, admiration. Are we even ready to hear that word?
How can I throw my love in a circle? I ask her that on beaches in evenings, where dirt in saltwater kisses the sand and fantasizes about the rocks it will someday erode once I am hopefully sand myself, or worse, have returned. A night beach is unsafe for young women.
And yet, recently, in an act of self defense, I walked to the ocean. I divvied up pistachio cake on bone china, opened my mother’s hands into natural shapes and felt her swimming, liminal, life-d. Life-ful. I want to shield her from truths: about my Nike clients and their bodies, their clearance aisles and their bad behavior.
You, who are beloved, have appeared on my night beach, so I am relieved. With your companionship, I defend my Self. I want to be where you are, at the wrought iron railing, take me there. We imagine balconies, yes, but rarely we touch them. I want to be where you are so I can tell you that I recently met a woman who knew her life’s work. What a relief. A vital feeling. A must. Top ten feelings to feel.
I want to be in your upstairs. I want to sort your smaller trinkets, press salve into your nail beds, see your home bed in the clay. I parrot these wishes frequently. Then people say I’m too obsessive, why’s that, because I want to run my cursor over your activities, to know you? to search about you, you who leapt at first cliff, you who shouted names at stars.
Let’s commit. Let me split aloe on your behalf. In being half, let me assume you will want to be the other half. But I just found out about the group text. Everyone’s in it, but not me, but everyone. I should’ve — I should’ve — I shouldn’t’ve — if you found a frantic yellow lab in the foyer of a supermarket, you wouldn’t abandon it, you would assist its becoming.
As an autistic artist, I have asked many strangers to assist my becoming. On days I had a seizure or a meltdown, which is another word for a horrific tantrum, I saw how you stepped in. Knowing we move under one atmosphere, I will name your kindness “self defense.” How else are we to respond to imminent violence? On which days of the week should we nourish another? On which days of the week should we nourish ourselves?
What’s your first thought when you look at at a Gradual Electronic Decelerator? What’s your instinct? It looks like a shock collar, right? But what if I covered that in floral language, in poetry? What if I covered that in medical terminology? Or if I told you devices like this one are still used today, in 2019, to “correct” autistic people? That would be unbearable, right? Once you know, you’re complicit. But this is happening today at an institution in Massachusetts for children and adults with disabilities. It’s called the Judge Rotenberg Center or the JRC. The JRC tortures patients using this electric shock device, the Gradual Electronic Decelerator or “GED”.The GED is used as an “aversive”; staff at the JRC use the pain of electric shock to punish autistic people for doing certain things. They’ve shocked people for things like standing up without permission, not taking off their coats, and even for screaming in pain while being shocked. And for simple things, like shuffling.
Some autistic people engage with repetitive movement such as shuffling as a form of self soothing. In popular culture, you might have seen this as hand flapping. There’s a hand motion I’ve seen people use to emphasize the word “retard;” they throw their wrist across their chest. That comes from autistic repetitive movement.
I’d like to share with you a repetitive movement I learned from my heritage; it’s taken from traditional Irish stepdance. I find it quite nourishing and do it when I feel safe or when I want to feel safe. It’s a simple shuffle called a 1-2-3. It’s a subtle weight transference; you simply shift your weight from foot to foot. If you believe autism is physical, I invite you to try this shuffle now. We have easy instructions on YouTube here:
If you believe autism is mental, then I invite you to help me think of Ari. Ari is a thirteen-year-old boy imprisoned at the JRC today. Remember, he isn’t there for a crime — just for the chance, roll of the dice, the way his mind moves. He’s not doing time for breaking a societal agreement other than one that has something to do with normalcy that’s never been quite fully explained to me. On a rare day when the press was allowed to visit the Judge Rotenberg Center, they witnessed Ari being shocked thirty three times in one day for shuffling too loudly.
If you believe autism is spiritual, then I invite you to help me call on Ari with gold threads. Maybe we can send him a note. Use your free body and your freedom. Try that shuffle again, just one more time, but this time, maybe a bit louder.
In 2013, the United Nations described electric shock treatment as torture. In 2014, the Food and Drug Administration said GEDs should be banned, but that has never been enforced. I can give you an action, if you would like one; there are certainly people you can write to, but I wonder if we might think instead more deeply about how we name an Other and what we do with them once we have that word. How we label being ill versus being alive, here, here on this atrocious planet, now that is a problem. A physical, mental, spiritual problem. Who wouldn’t want to label it?
If you are tasked with listening to an autistic child or friend, you might be inclined to protect them by telling them to “be normal,” and I understand that. Okay. Okie dokie. But the greatest joy I’ve known has been frolicking on the inside, and I call that self defense.
She said one of the character traits we’ll need to defend ourselves is forgiveness, but in diagramming sentences and cities, I have seen very little evidence of forgiveness. In fact, I’ve been proud of my own steadfastness before, even bragged about it. Why forgive? The alternative is a forever feeling, permanence, comfort, and I want to be known for sticking to my guns. I would never want to shoot and miss. But then—I saw an update of her grin, and I was ashamed; it doesn’t carry her original sweetness.
Tell me. If I never saw an example of forgiveness, do I still have to do it? Help me make an offering to the comic/creator who formed us so I can ask. I’ll ask about the rips in our firmament, at our various entrances. We can stand together after the break in. Defend me. Defend me! Because even activists and surgeons meet gruesome ends on the freeway, it happens all the time. Acting out. Helping or harming. We’re evil in a day. Twin halves complicit, in tandem with madness. At the bottom of our river with old shopping carts voted most likely to ensnare, I could name her original sweetness. We could walk, spine first, on a night beach. I parrot this wish frequently: that she’ll return a time to nourish. Nothing would bring me more pleasure.
Furious cowgirl, roiling Beethoven, stand beside us in our shifting helixes. When we cry we can’t bear it, say we can. Say that now and again in the new now we’ve just made. I know you can because I have seen you. Once in a thigh-shaped lagoon, once a perfectly-ripened orchard, you curl in the water, you 4” x 6” smiling family, you the name of inches, you sweet system of measure, you the inches themselves, the errant dusk. Dark, perfect you. Bells both ringing and silenced, small stone in the mouth, we designed you this shuffling. In each tiny rivulet a new oxygen.
Well, let’s shuffle and just see. See if in forgiveness the surges from our hammocked synapses nearly shut down power for half the district, just see, if our inner ears sing the harmonics, infinite melody. In this abundance, I swear I feel the sheen of a flank, the wet foal of my own skin, spelling out songs, feeling ritually wedded. I trust you this way. Today, and every day. In return, if you’re reading this now wishing you could say whatever you want, know that I walked here through vistas, grand landscapes. I skipped cliffs, I skipped night beaches, so I could come tell you: you can. Do I miss my home? Do I think about going back all the time? Of course I do! Obviously, I love you.
Knowing that, can you forgive me? Can you forgive my weird, my shuffle? That at times I can’t or won’t adapt? Troubles: some cognitive, some behavioral? Aggression? Can you forgive me? I forgive you.
In the company of strangers, I was given a warm wooden bowl so large it could only be held with both hands, like an offering.
Editor’s note: Simultaneously published in Inverted Syntax Issue 2.
Joni Renee Whitworth is an artist and writer from rural Oregon. They have performed at The Moth, the Segerstrom Center for the Performing Arts, and the Museum of Contemporary Art alongside Marina Abramovic. They teach poetry at the MacLaren Correctional Facility in Woodburn, Oregon, in partnership with the Morpheus Youth Project. Their writing explores themes of nature, future, family, and the neurodivergent body, and has appeared in Lambda Literary, Oregon Humanities, Proximity Magazine, Seventeen Magazine, Eclectica, Pivot, SWWIM, Smeuse, Superstition Review, xoJane, Unearthed Literary Journal, Dime Show Review, and The Write Launch.