Perchance to Dream

The Hamlet I didn't expect

It begins with a birth.

We’re at a production of Hamlet, put on by the Peruvian theatre company, Teatro La Plaza. I found out about this show at the last minute. A devised show, weaving into Hamlet the life stories of an ensemble of actors with Down syndrome, I had to see it. Phil and I dashed back to Brooklyn from Philly to catch the final performance.

The program warned us that the play contained video of a live birth, but DAMN.

“They’re really doing it,” I murmur to Phil.

We’re in the front row, so close his knees touch the stage. When the house lights went down, the birth began without prelude: right there, on the back screen, a mother’s legs two stories tall, a baby crowning out.

“Oh shit,” I say, “oh shit.” The guys sitting next to me make eek eyes with me, and the woman to Phil’s left audibly squirms.

The actors file onto the dark stage, their backs to us. They’re watching.

The red is vivid, the viscera wet, the silence uncanny. The baby’s mouth guppies open, its eyes slit shut. Its newt hand flexes, reaching, reaching. A baby. I feel it there: a natal tug, right there, beneath my naval, where my two boys were, before they weren’t.

My firstborn refused to leave. Jackson needed to be cut out with surgical tools, which the residents counted over my open body before they sealed me back up, so as not to sew me closed with a scalpel inside. All the same I feel a knife in there, twenty-two years later, adhesions from my c-section scar grown through my tissues like vines. They thistle to my insides and throw up flares of pain I can’t predict.

Jonah slid right out. Silent as the baby on the screen.

When they cut the cord I lose it. The cord is thick, thicker than my thumb, and though I know this can’t be true—can this be true?—I’ve never seen this before. The scissors jawing, jawing. It takes so long to cut through, whole minutes maybe. Jawing, sawing. I pull my legs in, as if to roll the stone over the empty cave. Tomorrow is Easter. My sons are out. My eyes brim. The one on screen is crowned: a tape takes measure of its skull, and as the video fades to black, a gold crown falls on Hamlet.

The bodies on stage step to life, into the lights, turning to face us. So close I can see them breathing. I can see one of them seeing me.

There will never be a replacement for bodies in space.

I was unprepared for this ride. I knew it would be hard, but didn’t know just how.

*

When Jonah was born, I didn’t want to talk to other parents. I wanted to learn about Down syndrome from people with Down syndrome. I was midway through graduate school in oral history, and used my thesis to learn. I interviewed self-advocates, working with them to edit stories for a website. It took me a year or so. I celebrated with a listening party that doubled as Jonah’s birthday.

I wanted my thesis to do something, to convey the complexity and personality of the people I had met. Each of them were seasoned public speakers, who all spoke with me about limits: limited ideas people had of who they could be or what they could do, and limits to public speaking, too, which could feel like a script, when behind the scenes, life wasn’t always “so peachy.”

I wanted to somehow invite others along the arc I myself had grown on, through getting to know these self-advocates: confronting and releasing my own preconceptions about people with Down syndrome.

My son was just a baby. Who knew who he’d be?

“It’s too bad he has hearing loss,” our former geneticist said. As I’ve done so often, I swallowed my fury for a doctor. This was when Jonah’s karyotype, a detailed map of his genes, came back showing Mosaic, a rare form of Down syndrome often associated with “high functioning” people. (To that geneticist, hearing loss precluded high functioning, I guess.) In Mosaic, the extra chromosome that characterizes Down syndrome is present in only some, not all, of the person’s cells. So there’s often a less pronounced physiognomy—a dimming of the trademark features, the shape of the eyes, the thickness of the neck, the small nose and specific gait—and a better chance of milder intellectual disability.

When his karyotype came back Mosaic, it lit a specific little flame of hope I wanted to snuff right out. I hated hope. Too often hope hinged on a Down syndrome that could pass as “normal.” To hope for “high-functioning” felt like a betrayal of whoever Jonah might be. I hated the term “high-functioning,” which stank of eugenic roots and IQ tests, which suggested a person’s worth was bound up in what they could produce. I thought its conflation with “normal” was fucked up, and that normal, itself, was a damaging fiction. Local news stories of teens with Down syndrome crowned prom queen, or coming off the bench to hit an unneeded bucket in the final seconds while a yellow-lit high school auditorium roared. Those moments made my body pucker with complicated feelings I didn’t want to parse. I wanted to hope he’d be him, whoever he was. I wanted to burn normal down.

*

“I just want it to be possible for him to be an asshole,” I said to a new-friend mom. We were on a walk in Prospect Park, Jonah in the stroller, a music toy nestled next to his good ear. I was matchmade with her after Jonah was born. Her son with Down syndrome was five or six then. She was cool. I liked her. Funny, with an edge. Someone I could say this to.

I really hated the angels. “They’re so sweet,” people would say, “you’ll get so many hugs.” As stereotypes go, it’s not terrible: kind, loving, happy. But it made me furious. My friend said it best: “People treat them like stuffed animals.”

It felt dehumanizing. It’s human to feel, and even though I hadn’t yet met anyone with Down syndrome besides my own newborn, I knew they must experience the whole gamut of feelings. They’re so happy. It made me want to break plates. What kind of monster feels sad at the prospect of a kid having a happy life? But I identify so much with my own sadness that the notion of a happy-only life struck an existential dart through my motherheart. What kind of life is life without a deep strain of grieving blue? I wouldn’t wish depression on anyone, though my genes may do that for me anyway. But to live fully, I felt, meant to feel it all.

*

“You’re so lucky,” the nice nurse told me after Jonah was born. I was the wraith-in-residence, blowing through the NICU with my hospital gown half-open, eyes red, face streaked like I’d been clawed, a radius of pain silencing everyone I passed on my walks to visit Jonah in his plastic box. He was fine, giant compared to the preemies who terrified me, their weency faces bristling with tubes. The nice nurse wore butter yellow scrubs and didn’t seem to fear me. “He will love you so much,” she assured me.

There is no pain like milk coming in. It’s a form of localized panic; like my claustrophobia found its own metaphor to inhabit, and took up residence in both breasts. The need to be free builds and can’t be satisfied, not without a mouth. Even when he’s finished, the ductwork in there throbs. It cannot be emptied. You can’t put the weight down.

“So lucky,” the nurse repeated. She took him back from me and pricked his thick heel. Some other measurement he couldn’t consent to. She spoke again, clarifying. “Just—be so glad that he doesn’t have Autism.”

It had never occurred to me that he would. But then again it hadn’t occurred to me he’d have Down syndrome. Perhaps because of this nurse, I assumed that they were mutually exclusive. One small switchback on my steep learning curve. (“Mommy was WRONG!” is one of Jonah’s favorite things to say these days, signing “wrong” with infectious glee.) I remember thinking Huh? a few weeks later, reading a Down syndrome parenting memoir, as the mother described her relief when the pediatrician ruled Autism out.

What’s the relationship between relief and hope? One shows the other, like a shadow: relief for what isn’t shows what you hoped to be.

To be, or not to be.

What is the relationship between Autism and Down syndrome? The stereotypes around autism are brutal: cold, distant, nonverbal, incapable of empathy. Pretty much the opposite of Down syndrome. Jonah, reducible to neither, gives the lie to both.

*

Ser, o no ser.

Hamlet’s famous soliloquy is a moment of cheeky self-awareness in this play. The actors playing the prince - they each get a go in this production - rehearse the words in front of us, butting up against the script, as every actor who’s come before them has done. The words like rocks in the mouth. The back screen fills with video clips of other Hamlets, mouthing “To be or not to be.”

“Basta!” One Hamlet shouts. Enough!

Another Hamlet tells him: you have to stop trying to imitate Laurence Olivier; you have to find your own Hamlet.

Director Chela Di Ferrari, who devised this play through workshops with the ensemble over the course of a year, describes the particular expertise they bring, infusing this canonic, iconic play with a new urgency. “For many people with Down syndrome,” she says, “the question ‘to be or not to be’ is not just philosophical — it is personal.¹”

These are people “whose right ‘to be’ — in public space, in professional life, in art — is always questioned.”

The play gives a resounding answer to this line of questioning: yes. These players belong on this stage. They made Hamlet accessible to me, miraculous. Never have I so felt the interiority of the story before. The deep grappling with uncertainty, with what life is for, at its heart. Is it better to suffer the slings and arrows of the known world than to face the fear of the unknown? Is it better to live? What is it, to suffer?

For these actors, the slings and arrows of the world are the people holding levers of social control, who treat them as perpetual children. Parents, strangers, unrequited loves. Perhaps, the play suggests, some of you? In the audience?

Ah, there’s the rub.

Would that I were Jonah’s problem!

I knew this play would be hard in this way: seeing “high functioning” people with Down syndrome sometimes guts me. Because if relief is the shadow of hope, so too is grief. A sadness for who isn’t shows you hoped for who might be. I can’t pretend not to feel this when it takes over my body. I weep freely, the whole show.

Would that his path to a full life required me to get out of the way! And not instead to spend everything I have trying to dance a path open for him in the hopes that I can one day vanish into death, if not my own life.

Maybe I am the problem? Am I, or am I not? If someone knows, please tell me so.

*

Doubt.

“In neurotypical bodies,” writes Di Ferrari, “doubt is often read as philosophical depth; in neurodivergent bodies, it is frequently interpreted as incapacity. One of the things this process [devising Hamlet] allowed us to do is reclaim uncertainty as a shared human condition, and to insist that these actors have every right to inhabit it publicly, without needing to resolve or overcome it.²”

*

I never wanted to wish for Jonah to be “high functioning,” or close to “normal.” It was abstract, when he was a baby; holding this kind of hope at bay was political more than practical. But maybe there was some force or spirit at work, keeping me oriented toward the unknown; because I knew how many people “the known” left out. The hop-scotching conflation of high-functioning with normal, and of normal with speech, with language. I finished my oral history thesis clear on its limits. By interviewing public speakers, I was learning from people who could speak, people I could interview with my usual tools; asking questions, recording their answers.

What about all the people who don’t speak like that, or at all?

On stage, one of the actors howls, “Palabras, palabras, palabras!”

Words, words, words!

My body cries, basta!

*

Three Ofelias read us their dreams.

They’ve written them in a workshop with the ensemble. They read them aloud, from sheets of paper.

One dreams of a French paramour, another of a house by the sea. A job, free of her father’s control. The third dreams of having her own son with Down syndrome. She holds a ghost baby, gazing down at her empty arms.

Three Ofelias stand before us in the dignity of their own hopes, and when they crumple the paper, and put their dreams away, I feel it all: my own hopes and grief, and theirs, and all the longing I’ve learned from the people I’ve met through Jonah, people with Down syndrome or Autism and all manner of other difference, and the parents and others who love them, all of us with words for it or not, the pain of all our trying against the onslaught of a world that would rather not see us at all. I feel it all.

In a later act, the dreams become stones in Ofelia’s pocket, as she steps like Virginia Woolf into water. Weighing her down into death’s depth.

*

Jonah will dream; he will long for, he will want. He will crave touch, closeness, and a kind of intimacy I can’t give him, either with my body or by programming it with his Medicaid dollars; he will love and want for love, he will feel the space between what is longed for and what can be. He will suffer the whole range of feeling, being human. He may one day write or read or speak such dreams as he has; or, he may not. His dreams may remain as mute to us as stones. It’s our job, ever ever, to learn to hear him, in all the ways he speaks.

*

“Get up here and dance with us!”

This is how it ends.

At a fundraising walk when Jonah was a newborn, another mother saw me watching the small crowd of people with Down syndrome getting absolutely down while a DJ blasted pop hits. “Oh yeah,” she said. “There will always be dancing.”

Hamlet opened with a live birth, I read later, because each of the actors brought photos of their own births to the devising workshops for the play. Where do we begin? Who cuts the cord? How does it end?

This ensemble loves each other, that is plain, unacted, contagious. After everyone in the play has died, they grab their mics, resurrected, and command us to dance. Phil and I scramble right up on stage at Theatre for a New Audience, a place where I’ve seen work that’s run me through every wringer but has never before invited me to cross this threshold, to be, in this way, a part of it. I’m no dancer but it doesn’t matter, I look ridiculous, I fling myself free, and feel it: feel it all leaving me, or running through me, feel run through with some kind of power possible only because this particular ensemble of people has done this, has shared themselves, together, and has brought us all on stage.

“I want Jonah to be taken in by them,” I cry to Phil, riding the bus home. “I want a big group of people with Down syndrome to take him under their wing and make sure he gets to dream, too.”

“What are some of the things that people expected you to be, that you resisted?” I asked this of Claire Bible, self-advocate, in one of my thesis interviews, all those years ago. I can still hear her response.³

“Accepting. Accepting that I wouldn’t amount to anything,” she says. “Be realistic,” she mocks. Claire knows there’s a place for realism; the problem is when people in power impose limits without imagination. Without belief in someone’s capacity for growth.

Yes and. We must imagine growth unhooked from achievement. We must dream a new world entirely.

Jonah is fourteen, and we are starting to plan. The cast of Hamlet has given me a new dream for him: an intergenerational, inter-ability, disabled-led commune where days are defined by doing what they love. Or maybe it’s more honest to admit that this is what I long for, what I love. A life anchored in the arts, alive to life’s questions. Not defined by how high people function, but grounded in pleasure and friendship. An enviable life. One where I can be in the wings, if needed, or better yet, where I’m not needed, where I can do what I do best: cry in the audience, watching with an ever-dawning awe for all the ways that people show who they are.

Hamlet, a play about uncertainty, begins with a question: “Who’s there?”

Who is there.

That is the question.

Author’s note:

If you’re new here, welcome! I share stories every two weeks on Tuesday, shaped by motherhood, disability, the body, and the instability/necessity of language. If this is your first time reading, I’d love to point you to more, starting with War and Peace or Ms. Pombier Flips the Bird—two pieces that hold some of the core tensions this work returns to. And if you want more of Jonah, himself—his exuberance, his highjinks, the logic of his joy—I’d recommend Cosmic Encounters, Highs at Lowe’s, and Son as Syllabus Intervention.

Three Ofelias. Image description: three women with Down syndrome on stage, holding papers to their mouths.

Who is there? Image description: An ensemble of actors with Down syndrome stands together, their mouths open and fists clenched. A woman at the front of the group, wearing a crown, holds a sword.

Baby Jonah at the listening party / his birthday party, March 2013. Image description: A white baby with Down syndrome smiles a big smile, holding strands of his mother’s hair. He’s in his mother’s arms; she is wearing an orange dress.

1. Read more from Di Ferrari in the program, here.

2. From the program, here.

3. You can listen to Claire, too, here. The quote I’m referencing is from the story titled, “Define Your Life.”