Kids are the worst.
A whole auditorium of them, heads turned toward us, laughing. Hundreds of school kids, laughing at Jonah, who just bellowed into a quiet moment before the show began.
“Actual nightmare,” I mutter to myself.
School is closed in NYC this week and we’re at a planetarium in New Jersey, where school is in session, and this one, apparently, is on a field trip to the Liberty Space Center. It’s our first time here.
The kids are bopping around in the rows below, still looking at us, still hooting. I can see their mouths open. They’re all wearing the same shirt, a school uniform. Their faces split open in uniform glee. I can see their flashing teeth, the keychains on their backpacks, I can smell the ketchup wafting off them, hear the clack of their premature braces, their rustles and burps, the fourth grade sensory chaos they make down there, all coming out in their laughter, which burst like a blister and spread like a virus, contagious, a contagion.
It hurts. Me. Not sure about him.
Jonah’s rocking back and forth beside me, agitated, but as far as I know he’s still pissed that I didn’t bring him more turkey jerky, which is why he howled in the first place. But I know he knows what’s up; knows he’s caused a scene.
The moderator taps her mic. “Okay kids,” she says, “there are members of the general public here with us today. We have to be mindful, you know, not to make fun.”
I hear every searching pause between her words, and I feel for her, I do. She’s trying to do it right; she’s trying to do right by us.
The kids turn back to the front and the laughter fades as the lights dim and the show begins. There’s no shame in the air, none that I can taste anyway.
I guess that’s right? Shame’s not the way to teach?
I don’t know.
The night sky fills the dome above us and I flip the kids off below. Waving both birds toward the backs of their heads in hard little circles, like I’m casting a spell.
I never thought of it before, the force of the word curse.
One of their teachers is looking at me. I put my middle fingers away.
*
As the show starts, Jonah calms, and I take these twenty minutes to myself to think myself calm. “The parents are intellectualizing.” A line from Michael Bérubé’s memoir that I think to myself, every time I try and think myself calm.
Why do kids laugh at Jonah’s voice? Why is laughter their reaction? Why does it hurt so hard?
That one’s easy. It hurts because it’s mockery. “Making fun,” as the moderator said. A weird phrase. Not fun for us.
Laughter, though. This perplexes me.
I know how it feels to be a kid, the contagion of laughter, how it can take you over, spread like a yawn, a social reflex, hit you with the giggles you can’t stop, even if you don’t mean it, even if it’s mean. And maybe theirs wasn’t mean, per se — just a blurt jarred loose by the surprise of Jonah’s baritone holler, which I suppose is funny. I remember how it felt to be a kid, in a crowd.
And I know how it feels to be a teacher. When I was twenty-two, I signed up for Teach for America. I wanted to address systemic inequality in the United States, inspired after studying abroad in South Africa to turn my lens of learning about structural racism to home, and inspired after reading Savage Inequalities to do it through teaching. Recruited by TFA to do both. But I had no idea what I was doing. I was teaching fourth grade to a classroom of thirty-two nine year olds in San Jose. Everyone was bilingual except for me. Ms. Pombier loved those thirty-two kids—I still see them in my sleep—but love isn’t teaching. I taught the year through, but left TFA after. The fall from my hopes to the facts on the ground had flattened me into a deep depression. I didn’t want to live in the breach between what I meant to do and what I could, not when others paid the price. I was the only fourth grade teacher those kids would ever have. I wasn’t addressing systemic inequality. I just jumped into the chasm, landing in my classroom. I was just a kid, myself.
I see myself in the moderator, trying to teach what’s wrong without knowing how. I see myself in the young white teacher I make eye contact with as I’m flipping off the back of her students’ heads.
The laughter hurts because it’s not humor. Humor can teach, can reach people, be a release valve on social pressures. But this laughter isn’t that. Humor takes laughing with, not at. And that requires being with. And people like Jonah have been removed for the past century and a half, here. Removed in large part for the social comfort of others.1
I think one cost to that removal is this persistent social permission to mock certain kinds of difference. So even when we’re present, included, part of “the general public,” we’re marked as viable targets for derision. I see this all the time. The way kids’ heads turn, the looks friends give each other when we pass them on the street, in the museum, wherever. The ripple of silence followed by stifled laughter, as if we don’t see or hear the latter.
*
“I know something of disturbed areas,” writes nonspeaking autistic poet DJ Savarese in his essay, “Passive Plants.”
Putting poetry to what I guess Jonah may feel. Or not. Putting poetry to what I feel, anyway, now that Jonah is my heart.
*
The first time I met anyone with Down syndrome was when I gave birth to one. I was thirty-two. How had I gotten through so much of life without having a meaningful encounter with anyone like Jonah? Where was everyone?
Growing up in the 80s and early 90s, we knew where “those kids” were. Down some wing we never ventured to. We didn’t know their names. The savage inequalities I never even saw.
Once in sixth grade history class, a boy behind me mimicked the sounds one of the special education students made, passing in the hall, making the other kids in our class laugh. Mr. Pitcel slammed his palms on his desk and bellowed, “One car accident and that could be you.”
The hot shame and fear shut everyone up and seared that moment into my mind where it flared up when I heard the “R” word ever after, and once again, when I had Jonah.
*
When Jonah was born, a neighbor gasped and asked, “Didn’t you get tested?” Obviously, she would not have chosen him.2
When he was one, a little girl stood over him in the sandbox and pronounced to her friends, “There’s something wrong with him.”
Already she had friends, and whatever social radar let her know that Jonah was somehow toxic. She threw this one line down and the playground parted.
There’s something wrong with YOU, I seethed toward her. She was four, five maybe. Pig-tailed. Some iridescence on her shoes winked pink as she dashed around, bossing. The rage that raised its head in me swung wherever she went, that whole morning, and all the years since. She implanted herself in a short story I worked on for years. In every draft she appeared unchanged—pig tails, pink shoes, the same sandbox declaration.
He was just sitting there, playing with the sand like everyone else. What did she see in him? How did she know?
I know the historical roots of stigma against people like Jonah run deep.3 But this girl was so little. And there was nothing wrong with Jonah. He was playing in the sandbox, just like her. What did she already see? And what had taught her how to look?
In every draft of my story with that little girl, I took Jonah to a diner after the playground and stabbed a pile of pancakes through the heart, asking no one silently: Will he ever have a friend?
It’s the friends that kill me.
*
A few months ago we were upstate at the restaurant we always go to after we do our favorite hike. His French fries came out hot, and he hollered. A nearby table of Boy Scouts snapped their heads to us, and then, of course, buckled into laughter. Half the table moved on quickly, but the other half leaned in to mockery. I could see their little blond heads huddled together, making faces and sounds I knew were mocking Jonah. “Making fun.”
I stared one of them down as we passed their table on our way out, my fury full on my face, watching his face still and go silent, watching him look afraid.
Good, I thought.
I passed their Scout leader as we walked out the door, paying their tab, and tapped him on the shoulder.
“I wanted to tell you that some of your boys were making fun of my son.”
I gestured to Jonah. My chest tight as a fist.
As we were getting into our car, the Scout leader came running out to me, apologizing, confessing his Scouts had confessed: Yes, they’d been making fun of my son.
“It’s not okay,” he said. “I’m sorry.”
Driving home, I had to pull over. Windshield blurring, hardly breathing, trying to keep my body still so Jonah, in the backseat, wouldn’t see me racked. But who am I fooling, he knows my every cell.
Writing myself an email calmed me down. I needed to pin it down with words.
Because I see in these little white boys’ common cruelty the men they will become; because at the helm of our country is a clutch of small-minded man boys, incurious and drunk on power, led by a president who openly mocks people with disabilities and proves such mockery is not disqualifying but in fact endears him to the masses.
Because with their sidelong snickering, mocking my son, these Boy Scouts spat in the little flame of hope I work so hard to keep kindled.
Because their cruelty makes me a monster, a Medusa stoning a boy with my stare. Hoping he hurts. Hoping he sees me in his sleep.
I didn’t write the question I was answering but I guess it was some primal “why.”
*
When Jonah was turning five, I met with the NYC Department of Education to determine what kind of classroom he should be in. The goal is the least restrictive environment; the gold standard is inclusion. This is a hard-won fact of disability rights. Public schools weren’t even required to educate kids with disabilities until 1975, four years before I was born.
“Here’s how it goes,” the DOE rep told me in our meeting. They were pushing for an inclusion class, and I wasn’t sure it was the right fit for him. It’s not that we didn’t want that for Jonah, but he’s a complicated cocktail.4
“In kindergarten, everyone will be nice and friendly,” they said. “First grade, too, okay. Then in second and third grade, a few kids, usually a couple sweet girls, will take him under their wing. And fourth grade is when it all ends. Age nine. You know, they stop inviting the whole class to birthday parties. And the nice girls, you know, they sort of drop him. So it’s really important for him to get those friendships with typically-developing kids in the first few years, when he can. Before they age out of those friendships.”
What the fuck.
I’d have flipped them both birds too if I weren’t already hard-wired to perform how I must, for my kid. Mother rage with nowhere to go but into the hands that signed the IEP that got him as many services as I could.
What kind of theory of change is this? So you want my kid to validate the pitying impulses of a few “sweet girls”? What are you teaching boys and girls about who is responsible for care? And who is worthy of friendship? And what’s wrong with having friendships with other kids with disabilities? And what’s so great about a so-called friendship with someone who’s so-called typical if they’re just going to drop him once they’re nine?
*
My boyfriend’s son is nine. Sacha is a curly-haired kid with pencil-legs and bright red glasses, obsessed with the NBA and Weird Al and The Offspring, who knows all the Greek gods and used to croon Randy Newman to me. Sometimes he laughs so hard he goes silent. He sleeps with two stuffed monkeys named Monkus and Monkus, and he used to take a book to read aloud to the chickens on a nearby farm. He called them “the ladies.”
Sacha delights in Jonah, and Jonah asks for him often. He likes to make Sacha laugh. Waiting in the Starbucks drive-through line one weekend, the talker piped up from the backseat: “Sponge.”
Sacha cracked up, and Jonah grinned his “I know I’m funny” grin, then went looking for more nonsequitors:
“North Dakota,” he typed. “Winnipeg Jets.” “Hockey catcher’s glove.”
We all laughed our hardest.
“Jonah’s a mystery,” Sacha likes to say, shaking his head.
Why does he listen to the first few bars of the French National Anthem over and over?
Jonah’s a mystery!
Why does he pull on my chin and inspect inside my mouth like I’m a horse?
Jonah’s a mystery!
At Phil’s house, Sacha and Jonah like to hang out downstairs, playing what Sacha calls “Vowel Ball.” He throws a ball to Jonah, who makes a loud “Oh!” or “Ah!” sound, then throws it somewhere far away for Sacha to fetch. It cracks Sacha up, which cracks Jonah up, which cracks Sacha up, and so on. Laughing with.
“I’m like Jonah,” Sacha told me once, “I like a commotion.”
When he said that, I had to turn away so he wouldn’t see my eyes fill. Something about that big word in his little mouth, “commotion,” brought to mind Jackson, my older son. I had him when I was just a girl, twenty-four. I stayed home when he was wee, and we used to spend all day talking only to each other. He could read when he was three. We made jokes made of words, me and him. My bud, my boy. Now he’s in his last semester of college. Older than his dad and I were when we met, in South Africa.
What’s the word for all this? The boy Jackson was, the boy Jonah is and the one he isn’t, the boy Sacha is?
I had to go to the bathroom and bend in half over the sink then, to let it all out. Then I dried up, and headed back out to the boys.
*
When Jonah went through a period of dark unrest last year, Sacha was there. We tried to spare him scary moments, but he saw a few. And had to deal with his share of the mystery.
One time, in the car, Jonah spat on him, out of nowhere. Sacha turned and looked out the window, without reacting, knowing what to do.
“I’d be mad if he got it on my jersey,” he told me later. He had a brand new Tyrese Maxey jersey. “But it was only on my jacket.”
I handed him my phone to read to Jonah our social story about spitting. Social stories are simple, using pictures and repetition and minimal grammar to draw a lesson down to its bones: “Sometimes I have spit in my mouth: that’s okay. I can spit in a cup, in a hanky, in a sink. This keeps me clean and safe. Yay, Joji!”
Sacha read it to Jonah, page by page. I snapped a photo and sent it to our Commune group text, the thread with Phil, and Jonah’s dad Jed, and his stepmom, Sarah. Hearts all around.
Jonah didn’t spit again, not at Sacha anyway.
Another time, Phil and I were upstairs making dinner, the boys in the basement, when I suddenly heard Jonah in distress. He’d had an accident, and flung his underwear and pants off, feces strewn all over the wall and floor. Not the kind of commotion anyone likes. I hugged him, and got him cleaned up, with Sacha standing by, quiet.
“I’m sorry,” I said to Sacha as I was scrubbing the wall, bundling the bedding into a pile, wiping my eyes dry with the back of my wrists, “I’m sorry.”
“It’s not your fault, Nicki,” Sacha said. “It’s okay.”
When he woke up the next morning, Sacha climbed into bed with us and said, “Let’s go downstairs and play Vowel Ball with Jonah, it’ll be so fun!”
I pulled his head to my chest with one hand then and ground my eyes dry with the other. Phil saw me and took my hand, rubbing gently in the webbing near my thumb. I allowed feeling to swell and crest and recede, to come back calm and warm, allowed feeling to fill me, without needing to find the right words.
*
Yesterday, for the first time in months, Jonah spit on Sacha in the backseat. It might be boredom; he’s been out of school for two whole weeks, sick a week then school vacation. Once again, Sacha responded without reacting, without even needing to be reminded. He just said, “We’re going to the movies, Joje,” redirecting his attention. Jonah didn’t spit again.
I texted the Commune: hearts all around.
“Sacha is the best human being on planet earth,” I texted to Sacha’s mom.
Sacha is nine and no sign of dropping Jonah like a hot potato.
“How does he know how to do this?” I ask Phil.
“He sees you,” Phil says.
“He sees us,” I correct him. Meaning all of us: the big family around Sacha and Jonah, Phil’s ex and her partner, my ex and his wife, the big family around Jackson whose birth started it all, and Jules, Jed and Sarah’s two-year old, the youngest brother in this bunch; the big us who loves all these boys for who they are, and who loves each other. The big, possible, us.
*
I’m still restless and rageful, though. This isn’t the solution. Individual love won’t solve structural problems.
The roots of historical stigma around people like Jonah are unmistakably alive today. Autism policy per RFK is driven by fear, cure, and eradication rather than rights and support. It medicalizes autism as a social burden to be eliminated. It diverts resources toward speculative cures and weak science, undercutting disability rights and community supports. It imagines a future without autistic people, rather than a present that includes them. It blames Tylenol, when we have systems problems. It’s like taking Tylenol when what you need is surgery.
I still want a righteous theory of change. The girl I was at twenty-two is still in me, furious and unsure. Wanting to curse the world out with both birds, wanting to break a bad spell wherever I see it.
*
At the planetarium, we met up with a boy from Jonah’s school and his mom. When Jonah saw him, he said his name, over and over. In my pictures from that day, Jonah is gazing up at his friend.
Jonah’s friendships are not less for being different from the friendships between the kids in the rows below, laughing at what they don’t understand. Maybe the joke’s on them.
Sometimes I think Jonah’s inscrutability is itself the answer I’m seeking. That it teaches me, over and over, that he is worthy of inclusion — of love — without needing to be understood.
“The right to opacity” is a phrase coined by French philosopher Édouard Glissant, from Martinique. It’s a reference I learned in my later teaching days, as a professor in Columbia University’s Oral History Master of Arts program. Glissant writes how, in the face of colonialism, or white supremacy, the refusal to be understood is a form of agency against the colonizers’ need to diagnose, label, categorize, sort, pathologize, or otherwise pin down with words. People in power create categories that are other-than as a precondition for their social control. Slavery created race, not the other way around. The right to opacity is not about not being seen, but refusing the colonizer’s terms for visibility.
The parents are intellectualizing.
Of course, I’m his mother. Some things I want, or need, to understand.
But Jonah doesn’t exist in reference to what I need or want. He’s utterly free, in some ways, of any kind of referent. He doesn’t give a shit what those Boy Scouts need; he didn’t need that bossy sandbox girl to play with; he doesn’t care a whit for the sanctity of quiet in social spaces. He would burp in church, blurt out “Ob-la-di” at a funeral.
He’s a mystery.
He will bellow if he pleases.
A bellows is a noun as well: pumping out the air it takes to feed a fire.
Sometimes I think he’s the freest person I know. I’m lucky to live close to his fire.
Author’s note: If you’re new here — welcome! Mother Tongue is a Substack written alongside a memoir about motherhood, disability, and language, with stories posted on Tuesdays, every two weeks. I welcome comments, and hope you’ll subscribe.
Disability rights activist Bob Williams uses the word “deported” to describe this removal. Here he is interviewed by historian Alex Green, on his Susbtack (Un)Hidden: Disability Histories and Our World, the first in a planned series of interviews with disability elders.
Yes, we did; the test was a false negative. Would we have kept it anyway? Yes, we would have. These are weird questions disability permissions people to ask, which I am happy to answer, especially if you have several hours or a lifetime to talk.
Alex Green is actively surfacing this history in his riveting book A Perfect Turmoil, longlisted for the National Book Award. On his Substack, he asked recently: “What if your entire perception of disabled people was built 110 years ago by a bunch of people who hated disabled people?”
At the time, he hadn’t yet been diagnosed with Autism; just Down syndrome and hearing loss. There’s a lot to say about the strange braid these three diagnoses make, especially what it shows me about how people see Down syndrome versus Autism. He’s both, all, at once. He defies division. That’s how I like to see it. But in truth, it feels truest to say he’s Autistic. And he was, then, though we didn’t know it. And there is a LOT to say about navigating the public education system, but that’s for another essay.
Nicki, your accounts of rubber-hits-road life details, quiet-moment reflections, meanings we're meant to see or forge (through pain or unfamiliarity) are all so rich and true. Thank you for sharing your life and your work! I'm not sure how I heard about something you wrote years ago, Words for Water, but that, too, was magnificent. I saved the link to my bookmarks and hoped there would be more phenomenal writing to come. I'm so looking forward to what's next. Your boys, your commune sound amazing, and I love how you honor Jonah's mystery and humanity.
Beautiful! So happy to be connected with you and your lovely writing again after losing touch. Look forward to reading more.