The other day, a friend asked me a question that loved, one I have never been asked: How do you tease Jonah?
It’s not that I tease him, I realized. It’s more like these jokes we have together. We rib each other. I’m kind of terrified of “teasing” Jonah - like, don’t poke the bear. But he is immensely joke-y, and loves nothing more than a good shared laugh. He’s cheeky and we love it. The trick is teaching him the line between horseplay and hurting. What’s the difference between swatting someone in good fun and slapping someone? Apart from the degree of physicality, it’s also about intent. How do we teach intent? He’s 14, and physical humor seems developmentally correct. But we’re not sure how to react when he smacks his older brother in the face for fun. If we’re stern, he’ll lock in and do it more, out of, I think, some kind of anxiety. But if we ignore it, what are we teaching? Just last night, instead of “booping” my nose, a sort of ongoing joke we have, he surprised me by clawing my eye. It really hurt. My eyes wimpled up and started leaking, and he went still as he does when someone is upset. Looking at me closely.
“That hurt,” I said and signed. “That made me sad,” I said, signing mommy sad.
He held still, still looking.
“You should say sorry,” I said, signing sorry.
He signed it back. Maybe he meant it?
For some reason, that made me cry harder. The spigot just opened up. We’d had a wonderful week together, he was out of school and we’d gone to Phil’s house where he’s always so relaxed, where he slept in until 10:30 every day, like a pro teen. He’d been his best self, the one he seems to most enjoy being, happy and chill, engaged and easy-going, goofy and loving. No stomach issues, no panic attacks. Lots of joking around, playing “Vowel-Ball” with Sacha, and making Phil sing “Ob la di” faster until his cheeks go rubber. Lots of hugs for me. The eyeball scratch brought me splat back down to the plot where I still don’t know how to parent. And it hurt.
The “say you’re sorry” move was inspired by Jed, Jonah’s dad, who rightly believes we need to respond to these moments with a clear message that it’s not okay. We know Jonah knows so much; so why wouldn’t we explicitly teach him this basic lesson, that when you hit someone like this, or push like that, it’s not funny, it hurts. I think Jed is right, but I don’t know why it feels so complicated. Except that everything is always complicated.
One thing we’re trying is making a social story to both encourage the jokester in Jonah and try and teach him where the line is. Jonah’s Joke Book. We also want to give him new material, more tools for making more jokes, building on the ones he has.
For instance: he will knock twice on things that aren’t doors, like, knock knock on my head, or on my tote bag, or on my headrest while I’m driving, then look at me sideways, and giggle. I’ll put my hand to my ear, like I’m picking up an old-timey phone, and say, “Hello?”
I think that’s actually way funnier than a knock-knock joke.
He is cheeky.
Last year, when he learned the sign for “trash,” his teacher told us he walked around the school saying everyone’s name and then signing “trash” and cracking up, like literal trash talk.
Last week, we had a pool hangout with two of his school friends, and Jonah immediately took to play-splashing at anyone in range and cackling. When he wasn’t splashing, he was leaning back against the side of the pool, smiling. He was so happy, with his friends. Phil noticed how chill he was, and said, “I think he’s more comfortable, seeing his friends here. Like he knows he can be fully himself.”
He loves nothing more than trolling me. He knows I hate strawberries, so one million times a day he’ll hold out his hand like he’s offering me one and say, “Strawberry?” then bust up when I make an “ew” face and pretend to puke. He routinely mocks me when I’m wrong, and tries to trick me into being wrong. On days when it’s a Daddy night he’ll say “Mommy night,” over and over super fast, to get me on autopilot saying “No,” then he’ll switch it up and say, “Daddy night,” and catch me out. He’ll crack up like, GOTCHA!
And he’s got a teen boy bathroom humor familiar to me from growing up with brothers and frankly, me and my girl cousins, too. He burps and tells us what the flavor is (“blueberry,” he’ll say, or “pasta.”) Sometimes when he farts, he jumps a little and shouts, “Ohmigod!” like his own body surprised him.
His school once gave him the “Jolly Jokester Award” at the end of the year.
It was far too hot last week to do our usual hikes around Phil’s house in the suburbs, so one day we drove in to Philadelphia instead. We went to the Dave & Busters there, which is right on the Delaware and has beautiful views of the river through big ornate windows in a party room you walk through before getting into the blackout casino scene of the arcade.
One way Jonah has changed me is that I used to think Dave & Busters was a living hell, the place on earth where it is absolutely crystal-clear how Jonah’s sensory delights are my sensory nightmare. But over time his pleasure has infected me, and now I find it relaxing. As soon as we enter the familiar blinging dark of a D&B arcade, my limbs go a little slack, my brain stops narrating, and I am content to simply follow Jonah around in some kind of zombie mode, there to refill his card when needed. He likes driving games but can’t reach the pedals, and for a long time I would stand astride these MarioKart and Hot Wheels games, reaching my left foot in there and pressing on the pedal while he steered, practically humping the machine, its manic soundtrack thrumming in my skull. At some point I realized the car would just go, he didn’t have to press the pedal, and that, my friends, was life-changing.
Now, one of his favorite games is called Typhoon. We recline together, side by side, and get not-so-gently jostled while watching a video simulating some kind of wild ride: a roller coaster that goes off the rails, a bike caper along the Great Wall of China, a knock-off Jurassic Park drive. I like it because we just lie there, and because Jonah narrates the adventures, in his way. Snow, he’ll sign when he sees it falling, slicking the Great Wall to treacherous ice. His hands shifting gently in that sign that I just love. Or I’ll hear him singing, “I love the mountains,” and look up to realize the video has shifted into a mountainous landscape. Or I’ll catch him huffing the steering wheel, seeing how it smells. These aren’t jokes, really, or stories, but they’re him putting his own language to what he sees, the connections he makes, or the way he likes to engage with the material world. This time I sniffed the steering wheel, too. It smelled like nothing, but then again my sense of smell hasn’t been the same since I got the og Covid in spring 2020. This was one instance I didn’t really mind.
After D&Bs, we got burgers at a South Philly bar where we watched Spain trounce Austria and listened to a group of old bar flies belt along to Minnie Riperton. “I wanted this for our wedding song!” one guy howled, pounding his palm on the bar. The bartender brought a coloring book over to our table and gave it straight to me. “The parents always end up coloring,” she said, and she was right. I scribbled freely on an octopus while Jonah devoured his burger, murmuring, “Meat,” with pleasure between each bite. When he finished, he picked up his red tap-tap and sniffed it, saying, “Mmm, cinnamon,” looking at me and laughing. He loves smelling Big Red gum or Cinnamon Trident, and was pretending this was that. We cracked up. From there we drove to meet my friends for ice cream in Old City, where one shop owner lovingly mocked another as he tried writing “CLOSED FOR THE FOURTH” on the window with a marker, his handwriting ballooning in uneven swirls. The four of us, me and Joje and my two friends, cracked each other up making shapes with our bodies, no reason. None needed.
Laughing doesn’t need rationale or rationality. Jonah’s humor is social and relational, scatological and linguistic. It shows he knows so much, if you know enough to understand it. He’s funny. Funny ha-ha and funny weird, and weird might be my highest virtue.
My friend Matthea, whose stoop we like to visit, one told me that Jonah and I have a wild choreography together. I love knowing his language, and love the one he brings out of me. At the bar in South Philly, I stood across the loud room, waiting to order our burgers, and looked over at him at our table. He blinked hard at me, and I blinked hard back, and we both laughed. Our secret handshake. Across the room, I signed to confirm with him his order, and he signed it back. We don’t need to be able to hear each other to know what we both know.
*
This form of Deaf power always makes me think of one of my favorite stories from the disability rights movement, the 504 sit-in1. Section 504 of the Rehabilitation Act of 1973 made discrimination against disabled people illegal in federally-funded programs, but for years, the government failed to sign regulations to enforce it. In 1977, disabled activists occupied federal offices around the country in protest; more than a hundred people in San Francisco occupied the HEW building for 26 days, still the longest occupation of a federal building in U.S. history.
This was an intensely, joyfully intersectional group, across disabilities, across class, across race. The Black Panthers led material support for the protest, providing food for the demonstrators and “‘keeping us alive body and soul,’” one person said.
I love this summary from queer disabled elder Corbett O’Toole:
What was significant to me, and what was the outcome of that, was that a whole bunch of different people who had a lot of different communities that they responded to, and a lot of different issues that they were concerned about, felt totally empowered. Felt like working together in a community. I mean, I’m talking about the Mill Valley moms of a disabled child and the street junkies. So that that fact, that when the FBI said, “okay, nobody can come in and out,” that a deaf person was up on the 4th floor signing to a deaf person outside, who was talking to a media person to get the word out about what was going on……you know, everybody learned that if you really want something, and if you get a group of people to fight for it with you, that you can get anything you want….
The police cut the phone lines, but they couldn’t stop the Deaf people from communicating out the window.
The demonstration worked: after 26 days, the federal government signed the Section 504 regulations without the weakening amendments activists had feared, giving force to the first federal civil rights protections for disabled people.
When the sit-in ended, “Dennis Billups, a 24-year-old Black man blind from birth and in many ways the spiritual leader of the San Francisco demonstrators, marched joyfully out of the Old Federal Building holding a sign he instructed to be made, ‘You don’t have to see it to know.’”
Video above is Jonah and Phil doing their rubber-cheek joke. Video description: a boy with Down syndrome and a white man with a beard and glasses sit side by side, each shaking their cheeks faster and faster.
I first learned this history in Beyond Affliction, a four-part audio documentary produced by Laurie Block and Jay Allison, which I highly recommend. Episode 3, “The Overdue Revolution,” tells the stories of some key moments in the disability rights movement. You can also listen to an audio documentary on the 504 sit-ins on the Disability Rights Education and Defense Fund website, here.
How hilarious! I can see these jokes of Jonah with every explanation Nicki. You and Jonah just made my day. ❤️
And Phil ... I loved your contribution. 😁
I love this. I had no idea about the 504 sit in history! That video of the mouth jiggling, priceless!