Wednesdays are sacred.
Each week, we make music with a group called the Huffbunnies. It’s a hootenanny instigated by three friends in 2015, who missed making music. (Cute lil’ origin story here.) Why not do it, why not take turns hosting, why not bring a bottle or three to share, why not grow a bit, neighbor by neighbor and friend by friend? Why not spend every Wednesday making joyful trainwrecks, why not give it all a name?
I joined the Huffbunnies in 2017 at the invitation of my friend, Michael Hearst, musician extraordinaire. Michael and I used to play basketball on Monday nights in the same spirit of why not. One night after hoops, I said to Michael over beers, “I wish I could just sing with a group of friends.” I only ever sang to myself or to my sons, but something in me wanted … something. The feeling of being a voice among others, the casual magic of it. Michael told me that he does that every Wednesday with his neighbors, a group of folks ranging in age from ours on up, a bunch of Brooklyn characters. “Why don’t you come?” he asked.
And so: I stepped one Wednesday into a warm Huffbunny home where I was welcomed by a bunch of strangers, gathered around a table spread with little bowls of nuts and cheeses, bottles of wine made in part by these very people at an annual neighborhood grape-stomp. We belted out Americana standards, and Michael’s piratey original, Jean De Clisson, and a spiritual I didn’t know but intuited each note for, “Mary Don’t You Weep.” Michael handed me a washboard, clacked his whiskey against my wine glass, and I was well and fully hooked.
In recent years, I trailed off. I had Jonah on Wednesday nights, and was too pooped at the end of the day to do anything. But I missed the Huffbunnies at a gut-level. Missed connecting each week with this intergenerational group, missed putting my voice in space with others’, missed the fun of our seriously imperfect music-making, missed the cycles familiar to me in this circle, the songs we fail at every time and the ones we’ve improved on, the way one week will feel raucous and the next a little quiet, the way, when we play on the sidewalk in good weather, people passing by smile to see us, and sometimes they sing along. I missed all of it, until the obvious finally occurred to me: why not bring Jonah?
Now, Jonah, too loves the Huffbunnies. He clocks his week around it, counting down to Wednesday. He’s got a poster-sized photo of them behind his desk at school. Each of the Huffbunnies has an icon in his talker, and Jonah asks for them by name when they’re missing. He takes his turn in the circle, calling out the songs he wants us to sing: “Ob-La-Di” by the Beatles and “The Ants Go Marching,” which he conducts with a ferocious glee, whipping up our tempo by shouting, “Faster!” after every number.
It’s been fun to watch my friends have this kind of fun, at Jonah’s behest; to let themselves take a counting song seriously, to get silly in the way Jonah invites. We were already a group predicated in some part on the fun in imperfection, the way that music itself becomes a force; the thing we make together holds us together. I feel shy sometimes about singing there, but never feel ashamed of how I sound. I feel loved, not for my voice but for how I show up in the circle, and I love them all right back. And now Jonah has that, too.
So it broke my heart last week when he had a “big moment” at Huffbunnies. He has been steady for months, but in the past couple weeks, something seems amiss, and we’re trying to learn what might be wrong. Is he in some inner pain he can’t describe or point to? Do his meds need tweaking? Is he just pissed off for this or that, like any fourteen-year-old kid?
On Wednesday, it started with crossing the street. A beautiful early summer evening, sunshine and green leaves, commuters walking home, Huffs circled up with guitars and ukes, a homemade stand-up bass and two harmonicas. Jonah has been doing nervous halting dances when we cross the street, pushing at some edge of safety. This time, he angled himself toward oncoming traffic, and I had to use my body to block his from walking out into the busy avenue. Anytime we have to use physicality to keep him safe, it sends him spiraling. We made it across, but I could see the storm rising in him, and with it, his own sadness.
It’s like watching a possession; I can see the rage rise rigid up his shins and thighs and take him over in his middle, see his eyes look out of his reddened face like they’re pleading “help me,” wet at the lashes already. I can see his attention find a target—a music stand behind me—and before I can put my body there to block he’s knocked it over. He slams his chair, he grabs for another stand, he whips a box of guitar picks, which scatter along the sidewalk. I stand between him and the other Huffbunnies, trying to tell them with my back to carry on, please, please don’t feed his shame and panic with attention; I sing through it, too, trying to show him without saying so, “We’re good, you’re safe, it’s okay, we love you.” He ducks his face behind both hands, hiding. I can see his chest tense, and press my hand to my own sternum and breathe deeply. “Huffbunnies,” he says in a small voice only I can hear. Hiding behind his hand. When he peeks out, I sign, “I love you,” and then he sinks again.
This goes on and on.
One of the Huffbunnies texts me, “What can I do, how can I help?”
“You can punch me right in the face,” I text her.
Haha?
I don’t mean it, of course. But it’s so painful, to see him in pain, to see how his pain can look to the world like violence, to see its violence take him over, to be with him without being able to make it okay.
I call Jed, Jonah’s dad, my co-parent extraordinaire, and he comes to the rescue. Jonah gets in his car and promptly whacks him in the head, tossing a cup of melted ice from the backseat to the front. “We’re okay,” Jed tells me through the window, without words. My arm has a leopard print of grease from an oily chain I tried to keep Jonah away from, when he saw it dangling in an open garage door behind the Huffs.
Everyone says goodnight, we love you, see you next week as we leave, and as I leave, my own chest tightens and releases in great heaving sobs. A couple Huffs text me, checking in. A couple more email me later. Jed drives around until Jonah has calmed, sees we get settled in at my place okay, and then heads home to his.
Jonah and I cuddle like always before he goes to sleep. I shower, scrubbing the spots from my arm, and letting myself weep freely, audibly, with a kind of release almost like what I get from singing.
*
I don’t know if Jonah would call it a panic attack, if he had that language, but I know how those feel, and that’s what it looks like, to me.
I have panic attacks less often now that I’m medicated, but still, they come. Last week I had several about my own writing. My last post, about access and education, brought our experience as Jonah’s family explicitly into a complex, fractious, political issue. With Mother Tongue, I’ve been experimenting with how it feels to be writing in public, and for the first time, I really felt it, the public-ness of this kind of “speaking,” sharing aloud, allowing myself to have a reaction to something, allowing myself the possibility of being misunderstood, or misunderstanding. I had been feeling good about getting my little engine of writing going, but now I felt suddenly, deeply unsure. What if I got it wrong? What if I hurt people? What if I’m called out for being ignorant, selfish, part of the problem? What if etc etc? Panic like a weather system moved up my body from toe to throat, and everything inside me pulled tight as if to clutch a raincoat closed, as if to get small would help me from being hit by whatever storms may come. I wanted to shrink until I vanished, wanted to delete everything I’d ever written.
I didn’t want to feel this fear; I know fear keeps people quiet and still. And writing about the issue had already shifted something in me, brought me to the question I really want to ask, which is not (or not only) how can I keep getting what my own kid needs, but how can my own advocacy for Jonah be part of a shift toward better access for all kids? What is a theory of change that includes Jonah? I kept asking myself. What is the theory of change?
I had that question in mind when Bayo Akomolafe floated across my screen. His was a name familiar to me but I did not know his work. I clicked, and saw these keywords like stones across a river: “beyond the binary,” “nuanced,” “open-ended,” and “transformative.”
Just those words were enough to open my spigot. I felt it — I could breathe, I felt unclenched. Tears came, their own kind of flow. I felt unpanicked.
Over the next few days, I dove in. Listening to this interview while driving Jonah to appointments and school, I felt a dawning joy overcome me as Akomolafe talked about his theory of change, in which cracks have something essential to teach us.
“This is disability!” I shouted, and then he said it, himself.
“A crack,” he said, “is when some kind of explosive intelligence bursts through, and it’s a space … of disability. A crack is disabling. … Disability is a calling into question our claims ….”
Now I was laughing, pounding my steering wheel. Jonah was in the backseat, blissed out and stimming on “The Grand Old Duke of York.” I could hear its tinny beats through his headphones.
I’d asked for a theory of change that didn’t leave Jonah out, and here was one that had him at the very center.
I realized that even my desire for a theory of change that included Jonah reflected the very problem, as I see it. This desire for inclusion presupposes that the highest aim is gaining access to the world as it is; but everything I’m learning from disability, by attuning myself to Jonah, is that the world and all its existing frameworks need to be wholly undone. I want a reimagined world completely unhooked from the logics and accumulated terms of the one that exists. And here is this philosopher and poet, working tirelessly to envision beyond the colonial, patriarchal, repressive systems it’s so easy to see as intractable, saying, a few minutes later, “My son is Autistic, as I am.”
Full body tears followed then. A loosening at the level of my every cell. My lungs pumping like a bellows, not with the shallow gasps of panic.
At the end of the interview, Akomolafe shared a story about a time when his son had a “big moment” in a shopping mall in India, where they live. Here’s the story he tells:
“And I’m trying to fix him. I’m trying to put him back together. I’m trying to hush him, I’m trying to give him a cookie, I’m trying to say, ‘It will be alright, it’s okay, just, just, let’s get out of here, okay? No need to flail, no need to wail.’ I’m speaking from my rationality. From the gilded interiority of my rationality. And I’m trying to gentrify him. I’m trying to save him. I’m trying to bring him into my reality. But there’s something exquisite about what’s passing, about what he’s sensing, that does not lend itself to those moves. And so I’m there, I’m failing, I’m ashamed, and my wife comes up, and says, ‘Walk away.’ And so I walk away. And she proceeds to lie down, gets on all fours and crawls up to him, and lies down with him. She doesn’t say a word. She doesn’t say, it’ll be well, she doesn’t say it’s gonna be fine, she doesn’t give him hope. She just stays with that passing, too. Because our people know, and they’ve known it for a long time, that when a wild god passes, the thing to do is prostrate yourself. She does so. She accommodates him, and it’s not accommodating in terms of inclusivity, she doesn’t accommodate him, she accompanies him. She travels alongside him. As Eshu, the Yoruba trickster god, traveled with the slaves, she travels with him to this desirous place that is beyond words, that is non-legible. She accompanies him. And I’m watching. And I know that is politics. I know that is emancipatory. I know that is de-coloniality playing out in front of me.”
Full body release.
Listening to Bayo Akomolafe unpanicked me because I recognize in this story and in his philosophy all I see in Jonah but don’t always know how to name. Hearing someone argue a theory of change whose understanding derives from and is rooted in what Jonah shows me, which is Autistic wisdom, and someone who can language for me how this is political; someone who knows these moments that are so painful are connected in some way to transformation—all of this made it possible for me to breathe. It was the intellectual counterpart to Jonah pulling me into his embrace and holding me there, eyeball to eyeball in that way he has, when it feels like we’re touching at the soul.
This was affirmation from my own highest god, the god of language.
I would like to be as punk as Jonah, who doesn’t need theory to know what he knows. But for now, I do. It helps me breathe, move, open toward possibility, instead of closing up with panic, to have someone put such words to what I’m experiencing, and help me see it as part of something bigger than my own experience. Maybe my writing is part of how I might hope to give that to myself, and maybe to others, too.
It is no small thing, to see another, to accompany another, to be with another, to witness all they are. I see the release and pleasure Jonah feels when he feels seen, when he feels recognized. The people who witness him with joy, alive to his intelligence, the people who stay with him, who accompany him or accompany me as I travel alongside him, these are the people who comprise my personal church. It feels holy. It is. We have it with our friends and family, with our therapists and teachers, with the dance teacher and martial arts teacher and capoeira teacher and poetry teacher and music teachers who all see and love Joje for who he is. And we have it with the Huffbunnies, who will welcome us back next week, who will greet my son with joy, who will hold my voice among theirs, our imperfect chorus, held together by music, by the force of what emerges when we gather where we all can sing.
As I watched Jonah last week, I was reminded about my own mixed up adolescence. Remembering how hard it was to express what I was feeling. In my case I was pretty alone. In Jonah’s case, he is surrounded by love. I have spent many years around young people, being 14 is hard.
Every night I wake Jonah up at 11:30 to pee and many many of those nights I hear Jonah talking half awake or half asleep or totally asleep saying… “huffbunnies…”. He loves it so much. He knows everyone’s names and when we go to fans house (Lowes) he often tells me which fan each host bunny has.