Queen of That Universe

By

The calmness of the café is undoubtedly my own. I know there must exist the etching squeals of the espresso machine, over and over. The rumbling crescendo of fizzle as it pushes out its final drops. The deep barreling of grinding beans, the scent of hazelnut I notice in wafts. Nearly every table is taken, people jabbering away in huddles of two and three. Their lips and eyebrows eager, their hands flying. Bulky mugs rimmed with froth clinking on the tables again and again. I’m sure the sounds are there, though I don’t hear them. My hearing aids are off.

I gauge the conversations in the café easily from a distance, sensing their temperature even before zeroing in on lips. There’s surprise from the styled beard whose eyebrows jump as he leans forward, head wobbling. Others squint their eyes, signaling deep conversation. Reading a room this way has always quelled my anxiety about how I might, or might not, fit into a space. If I feel welcome enough to enter.

The café is dimly lit with an overhang of reaching recycled sculptures and walls full of bold eclectic paintings. It buzzes with piercings, blue hair, bumper stickers for love, peace, equality. It is an alive but calm space. I watch the barista’s lips for vanilla coconut latte. Then I find a corner seat, one of the last open, where my back can be to a wall, and the world all available before me.

“Deaf enough” seems to suit me best. Many sounds are gone entirely when I’m unplugged; others, if they are there at all, are faint, garbled, speech indiscernible. Some days, some moments, I need to turn off the world and exist without the violence of sound at me, in me.

When I’m writing, I like to allow for my own disability to be and to live. I take out my hearing aids, on which I so heavily rely, and open myself to the other realm. There is a softness to it. It is soothing, just like that snowfall you watch hugged in a blanket, sunken onto a couch, warmed by a fire. It is out there, lovely, and you are in here, comfortable, your pieces in place.

I tell my friends it’s like the moment after work when they take off their bra, or that pencil skirt they have been wedged in for eight hours. Finally out of the prison of a certain stiffness and discomfort. The stiffness that sound can have to someone who is not always so used to it. To someone who can choose to turn it off.

There is something romantic in having an off switch. When I switch off and tune out, my body responds, a belly breath, rib cage opening, heart releasing a slight shift. I am here, finally alone with my own voice.

There is such stillness that I can, for moments, believe there’s not a world out there around me. A void, no cosmos. I could close my eyes with a surety that what exists is only my body and a blankness. Flat black backdrop, going nowhere. I am reminded of the repeated line in Sylvia Plath’s “Mad Girl’s Love Song”: “I shut my eyes and all the world drops dead.” It’s something like that.

Because of this, I have to be careful how I orient myself in space. What I could so easily miss when teetering on the edge of deaf and hearing would be those elements behind me, at my periphery. I need a wall at my back. As much as I want to exist just as I am, I also know that I must remain accessible to the public world, within its reach. I have been teetering, toes dipped and half in each of these worlds for a lifetime, knowing that even if I jumped fully into one world or another, I wouldn’t quite fit. When neither side will fit your mold, it is a tightrope that you learn to balance. To lean, to splay, swing, sit, dangle—and to sometimes walk winged and hopeful.

 

When I was a kid, my mother would never wear her hair up. Her ears never showed. She did her best to hide her hearing aids, and her hearing loss. Hide, conceal, fake what you can, avoid what you can’t fake. As kids, my siblings and I learned to accommodate her when out in the hearing world. Repeating to her, answering for her. She never wanted to say she had a hearing loss. I would grow defensive when people seemed to lack compassion and understanding, when people seemed confused. I would glare them down, preemptively ready for their rudeness.

I worried about her when we weren’t with her. It wasn’t until she was older that she seemed to start owning it. That she would tell people to face her when they spoke, or to repeat themselves, without embarrassment. That she would attempt something like a yoga class.

For deaf people, classes like this are more complicated. Everything is more complicated. Everything involves a heightened level of vulnerability. Eating in restaurants, going anywhere in public where there’s music on or noise, understanding doctors when they put their masks on. Movies, plays. We survive on closed captioning. There is more plotting to be done. For a deaf introvert, simple things in public can be an overload. I understood this—and my mother—differently as I got older and my hearing worsened.

She’d grown up with the concealing, the hiding, the embarrassment. That had been handed down from a father whose hearing loss was pinned to the tragedy of his young adult dreams. A boy told he couldn’t get his pilot license, a man barred from his hopes of flying in World War II who would, for so many years, refuse hearing aids and instead accept the frustration, the missing things. It had been all she’d known, well into adulthood.

When I had to start wearing my hearing aids, sometime around middle school, I did the same. I couldn’t put my hair in a ponytail. I couldn’t relax. I was embarrassed. Half the time I wouldn’t wear them. I kept it a secret for years. Or I tried to, though slowly people found out. I didn’t wear my hearing aids regularly until later in high school. I didn’t regularly tell people, or identify as disabled, until college. There was no beauty in it then, nothing lyrical or poetic, no upside, no art or zen. It took years for me to know the art of it. To be able to own the kingdom of silence, of removal. It took even longer for my mother.

Because, was I even deaf? I had no idea if I owned the “D” yet. Half in, half out. After all, between hearing aids and lip reading, I did fairly well in the hearing world. I could exist there neatly at times, passing as a person in the regular world of sound and speech and interaction. But I returned so abruptly to the other world the moment I powered off or my batteries wore out.

Without my hearing aids, there is no clicking of keyboards, no voices, no sounds of chewing, no loud stomach grumbles. No city outside that window. I’ve missed trains altogether. No dishwasher whir (I remember the days I didn’t know dishwashers made a noise). No birds, no music. The things that have sounds. The things that I learned had sounds.

Nighttime. Voices, you know, are still speaking in the darkness. But in darkness, there are no lips to read, no proof of sound. Had I imagined sounds? Tornado sirens, the squeal of my mother’s hearing aids when she put them in, my partner humming a song to my son. I have memories of these sounds, I think. But as the sounds have slowly dissolved away, I can’t help but wonder if they were there at all.

Am I deaf if I can sort of hear with my hearing aids in? Do I count? What does it make me if I lip-read, but didn’t grow up signing or knowing Deaf culture? We are the half-ins, my family and I. Hearing, with hearing aids. Hearing, though not well. Most of us start losing our hearing in our childhood. Speech intact, memories of a fully hearing world. Reliant on lip reading, mostly. Staring at people’s mouths, panicking should they turn away. We are in some invisible trench between the hearing and the deaf.

This trench has taken generations to own. Being made fun of, labeled, disregarded, shamed—generations. Eye rolls. Retard. Whispers, a hand over the mouth, words behind a back. Stupid. You know, deaf and dumb. Before we could really rule ourselves, our default was infantilization and imposition. The residue of deaf and dumb still flows in my blood. It’s become more subtle. The building of microaggressions, of tiny belittling comments and facial expressions, stacking atop one another into a tower that can tumble upon you at any moment in a silent cacophony. If you didn’t hear that tower fall, did it even happen?

Like, for instance, never mind. Never mind, maybe the worst. Someone who took back their words, rescinded their effort and connection. Who deemed it not worth it with oh, never mind. A hearing person couldn’t possibly fathom the power of an exasperated sigh and a never mind quite in the way a deaf person could.

 

“Tuning out,” my aunt used to say at night before she turned off her hearing aids. My grandfather taught me the convenience of an off switch. He’d purse his lips—”shhhh,” then a grin— while my grandmother called for him. In the mornings, I don’t put my hearing aids in until my coffee is made. It’s too much before caffeine. “Are you talking to me?” I say. “I’m not hearing yet this morning.” My partner and children are familiar with the barely alive shaking of my head as I point to my ear.

From my mother, I was gifted with this sensory switch, and from my father, I was gifted to be most absolutely not a morning person. I can think of no better way to not be a morning person than to be a deaf not-a-morning person. I decide when I allow myself to be confronted by the entire world. One thing at a time.

The dependency on technology actually isn’t one I loathe, though I have wondered about it. Would I perish from battery shortage or wire malfunction? I would breathe. I would shift over to the deaf world, as I so often do. Whereas this had been paralyzing as a teenager and young adult, I have come to see it differently in adulthood. The hearing world is dependent on whether or not I use my hearing aids; I am not. The realm of sound yields to me, sits at my feet. I can switch on. Or not. I am the queen of the universe in-between. And there, I stand atop a certain kind of peace.

 

My third-removed great-grandparents were deaf mutes. They attended one of the first deaf schools in Canada, which was, at the time, the Ontario Institution for the Education of the Deaf and Dumb, or the Deaf Asylum. I have often wondered about them, about the very different lives they lived. The opportunities they didn’t have, the way they were seen and perceived and treated. School gave them “official” language, citizen identity, connection. It was there that they met; they went on to have four kids and to live as farmers. Three or four years ago, I set out to learn more about them, and about the other deaf individuals that were linked to me in history. Because this part of my identity had been for so long kept hush-hush, I longed for embers of connection and understanding, things that could perhaps bring perspective to myself.

Alessandra Iozzo’s research into Canadian deaf history, particularly at the Ontario Institution my grandparents attended, delivered me close to my roots. Iozzo writes that d/Deaf individuals in the late 1800s and early 1900s were seen as a “troubling” sector of the population in that they did not “fit,” nor were they clearly “outside” the boundary of the category of “citizen.” In other words, the category of “normal.” Deaf individuals were infantilized, pitied, and feared for their immorality, lunacy, financial dependency, and perceived inability to reap the “rights of citizenship.” She highlights the following quote, from the parent of a d/Deaf child in 1858: “…they will continue in a state worse than the Heathen… Being myself the parent of a deaf and dumb [child], I feel most anxious that the above should be noticed.”

My eyes pass back over the word heathen. Twice, then three times. Capitalized. Heathen. And in the throbbing of my body, I feel the weight of that word sewed into the marrow of my roots.

“But you don’t look disabled” that boy had said to me so many years ago in that bar. Tickled with himself, he had continued, “You’re beautiful.”

Yes, I thought. How many ways did I know the word: Heathen.

 

As a little girl, one of my deaf friends, who wore hearing aids and didn’t sign at all, got a cochlear implant. There is a common debate in the d/Deaf world between those who learn lip reading and speaking, and the possible opt-in for cochlear implants, and those who grow up learning sign language and relying on sign as their primary communication. Some argue that not teaching d/Deaf children to sign deprives them of early language skill ability and development, as well as their culture. They see parents who don’t allow their child the immersion into what is their unique culture—capital D, Deaf culture—as selfish.

Because it is a culture, a way of life, of expression and experiencing. For parents to just want to assimilate their child to lip reading and speech can be seen as limiting and depriving them of something that is a huge part of who they are. I know Deaf people who would never get a cochlear implant, even if they were able. They wouldn’t want to leave the cultural world they know, and they don’t see it as necessary.

I know others who rarely speak and prefer to sign, or to write with non-signers. Still others do a mix of signing, speaking, and using hearing devices when possible. Then there is me, and I suppose I am one of those people, but I am largely removed from much of the Deaf world because I lived for so long in the hearing world. I didn’t grow up signing; I grew up lip reading. My hearing going, going, going. I became a self-taught signer, attempting to grasp at the straws of my own identity and connect with people who were supposed to be my people. But were they my people?

My friend in elementary school had a “deaf accent.” The way she spoke sounded different—after all, she’d never heard sound or speech. She primarily read lips, and had hearing aids that allowed her to pick up faint pitches but not language. I can remember other kids making fun of her, mocking the way she spoke. Going out of her line of sight to say something cruel. I can remember the muttered insults of retard and the laughing and snickering. Even now, I feel it like heat rising from my stomach to my chest, to my throat. Kids would sit on the bus, thinking it was hilarious to call her names and watch her absence of reaction.

Did she know? Sure, sometimes, but not always. And what was I to do then? Point out to my friend that people were making fun of her? Sometimes, I turned around and yelled obscenities under a death glare. Mike from down the street would say, “Who cares? It’s not like she even knows.” Looking over at her, I’d see her eyes flick back and forth, following the trees out the window as the bus drove. I’d notice the innocent, unknowing on her face and feel a lump in my throat. Was it worse to pity her innocence? Or to tell her, and watch her experience these awful kids? I remember the same feeling with my mom.

By then, my hearing was already declining but I didn’t yet wear hearing aids. I knew what was coming for me, but it was still a shock when it did. In grade seven, Max, who always wore Abercrombie, sat behind me whispering my name over and over, then making quiet breathy sounds. People laughed. I had gotten my hearing aids adjusted the day before. I realized in that moment, as I heard the snickers, the hum of my name on his lips, that this had probably gone on for a long time.

I didn’t turn around that day. I sat, and I listened to it. Rocks pitted in my stomach, clogging my throat. I prayed the teacher would start class even a few minutes early.

I can still remember the moment I looked over, and saw my teacher noticing them. She tilted her head and gave them a squint and an eye roll, a little smirk of amusement. That was it. She didn’t realize that I knew. I wondered if she pitied my innocence, or struggled with whether to tell me. After that day, I stopped wearing my hearing aids at school. For years.
What have I carried, from great-grandparents and the Deaf Asylum? From those who came before? What has stayed in the rungs of our DNA and the cells of our blood that are now mine? There are times I wonder if I learned that I was not “normal,” not moral, less than human, or if these ideas were already present in me when I was born. What did my body already know and assume? How many generations of trauma were already present in me? Would I recognize them under a microscope? My most prominent ties to a community?

What happens now to that decades old armor I have carried? The shame, the anxiety, the learned helplessness that I want to be rid of and need to keep? The awareness of inherited pain and misunderstanding—I shared that fight with a family, with a community. That fight was ours. I would have to dismantle what was ours. It would be hard to set fire to those things that had been ours. The pain I had taken such care of, for the people who were mine.

 

In the café, I prefer my back to a wall. If someone were to come up behind me, voicing an “excuse me,” I wouldn’t know. I could easily miss an emergent scene, or otherwise subject myself to social awkwardness and embarrassment. I preferred to see entire rooms, or at least to know I wouldn’t miss anything significant coming from behind. Like Abercrombie Max whispering my name, hissing at the back of my ponytail, exploding in giggles. Everywhere I go, these things are considered, analyzed.

I still grapple with the “worth” of being up front about my hearing loss. Though it typically becomes apparent fairly quickly. Me, right in your face, watching your mouth, needing repeats. Do I mention it at conferences? Do I throw it out there when I’m introduced? Why can’t it just be an easy part of my identity, an addendum to my name? A just-so-ya-know? Sometimes it is easy, but other times I hesitate. Even if I identify myself as deaf, people seem to question it, since it appeared I could hear them. Regardless, I don’t like “impaired” being a part of who I am.

How many social situations had I been in where I had been totally missing what was going on? In a group especially, people need constant reminders. Don’t turn away, or cover your face, or mumble. What a pain that is. In so many situations, it’s easier to slink away, pretend to know what was going on or just all-together avoid. Avoid, avoid, right there in my blood.

 

“When the bikers yell ‘on your left,’ it means they are coming up behind you on your left and you have to move,” the man said to me, holding my shoulders, looking me in the eye as though I was eight years old. On the hike, I had almost been run over. “I’m not an idiot,” I told him. “I don’t hear, I didn’t hear it.”

I’m not an idiot.

But how many times has my body felt idiot? I miss all kinds of cues, all kinds of things. Things I find out later, reading the lips of other people in the room. Or from a hand at my back, bringing me out of the way, getting my attention. Dare to feel like an idiot. Dare to wonder if maybe I am.

 

Sometimes, even as an adult, it takes someone grabbing my hand to tell me, “It’s okay.” And as an adult, I know in my logical brain, God, of course it’s okay. Of course it’s okay to take up space and exist as I am—I know this. But my body seems to remind me not to always be an imposition, not to get in the way, not to be an annoyance. And so instead, what I’m really thinking is No. I should not ask for help, nor call any attention to this piece of me.

At Jennifer Pastiloff’s beautiful On Being workshop (which I had the strength to attend primarily because I knew she also had a hearing loss and read lips), I couldn’t see her lips past the person in the next row. At first, I didn’t know if I would even bring it up, but as it became more apparent that I would miss the whole thing if I didn’t, I thought, I’ll just ask her if there’s anything we can do.

Immediately after the words left my lips, despite years of working to unlearn this very thing, I thought, No. And I stopped. Someone should not have to move so I can read her lips and hear her. I should not bother anyone with this, nor offend anyone else. She took my hand, when I said “No,” and she said, “But it’s okay.” Her hand on my arm was startling enough to bring me back to the world and remind me that this chick understood. It would be okay.

It was. A kind lady offered to move, without giving it another thought. I don’t know why I needed to be reminded of this yet again. Why I needed someone to hold my hand and be living proof in front of me that this was totally okay, that I didn’t need to slink away into the back and miss this whole thing—I don’t know. But I did.

At the end of the workshop, I told her that I probably wouldn’t have come if she didn’t also have hearing loss. “These things are a total nightmare. I was able to come because I realized you would most likely get it.” She did, and she told me to just move around and get right in front of people like she did. And so, I moved around and stared at people’s mouths and was able to keep up with what was going on without feeling like a total idiot. Or, maybe I still did feel like an idiot, but an okay-to-be-an-idiot idiot.

How is it that I still sometimes waver in my right to take up space, or ask for accommodations, or feel awkwardness required to do the things I need or want to do? Ask that person to turn around and face me while they talk to me—again? Probably not. Attempt another yoga class? Probably not. Ask the server or cashier to repeat themselves for the fifth time? The dentist to take off their mask? Do you know how exhausting it is to have to work to hear all of the time? To have to be an imposition, to make yourself weird and awkward, stared at. To interrupt. To move to the front, to ask people to move for you. To ask people to help. To need. My god. Existing out in the world like this is exhausting.

But no one gives you permission to exist, to take up space as you are, more than one of your people. And this was exactly what Jen did. She got it. Her giving me specific permission to be a total weirdo, in front of the whole room, whenever I needed to be, brought me back to earth. Because it’s never done, the work of figuring out how to be in either world.

 

At the café, one sense on mute, I notice the little girl’s hearing aids almost immediately, as deaf individuals typically do, excited to spot their people in the wild. They are purple, with a tie-die mold. They push her ears out, just a bit, and little curls from her ponytail bounce around them. My heart swells with the knowing. My people. When she and her mom sit down at the table next to me, I decide to reenter the world, and turn mine on, the noise of the café hitting me. I sign to the little girl, testing the water to see if she knows any ASL.

Do you sign?

Her eyes grow big and she looks over at her mom, a wide grin breaking out. She is learning, she says.

I like the purple. I tell her, Look at mine, they are boring! I keep my finger up at my nose after signing boring, stick out my tongue and make a face to exaggerate my lameness. She giggles, her eyes scrunching as she covers her mouth.

Her mom is looking at me, biting the inside of her lips. I smile. She doesn’t smile, and seems to disappear into herself, pulling her sweater tight around her frame. I’m not quite certain what I am picking up on.

“Do you mind that I talk to her?” I ask.

“I—yeah of course—people don’t normally…” She pauses, swallowing, taking a breath. “People don’t normally try to talk to her.” She bites at the inside of her lip again, the rims of her eyes a faint red. Her eyebrows are raised. “I don’t—she wanted the purple, but then I think people, they—she doesn’t seem to care but maybe I shouldn’t have—we’re doing signing now, but we didn’t before so we are learning and I don’t know, like…” She takes a breath, her thoughts clearly swirling.

I stop her. “The purple is awesome. It’s great you let her get it, and it’s great she is doing some signing, too. You are doing wonderfully. I didn’t grow up signing either.” Her eyebrows seem to exhale and settle a bit. She watches us with that worried-mom look I know so well. Stomach sick with anxiety and anticipation. Anger and sadness so long settled and stained.

Before I leave, after talking with the little girl a little more, I turn to her mom. “I just don’t want people to make fun of her,” she says.

”Look at her,” I offer. “She is so cool. She’s got this. I was not brave enough to get purple hearing aids as a kid. Even if I wanted them. That is something. That is huge.”

And I wonder if I could ever really be as cool as this nine-year-old girl, decorating in purple and tie-dye something that so fiercely scares people. Disability, difference. And I think of how times have changed since the days of my great-grandparents, since my own mother’s childhood, and even my own. How times will continue to change, and someday, maybe the residue and rust will start to dissolve. Maybe this girl will carry less on her back, less weight from the whispers of retard. 

Just maybe we really are at the beginning of the dissolution of the shame-filled narratives of difference. I want to tell that girl’s mom that times have changed, surely, even through my own mid-thirties. But I can’t promise that, not really. I can only tell her that the “we” her daughter is a part of is stronger and more fierce than it’s ever been. That centuries of thrown stones on this earth have churned out a people with grit in their very bones. People ready and bold, absolute queens of their very own kingdoms. Like a little girl with a showy purple crown at her ears, a dare of a smile, a lightness of perfect surety.

***

Rumpus original art by Lisa Marie Thompson.


Jillayna (said Jill-anna) Adamson is a mama, psychotherapist, and writer. She loves all things people, community, and culture, and is particularly interested in the individual identity development and the psychosocial implications of the modern western world. Jillayna primarily writes personal essays and narratives. She is a Canadian transplant currently living in the US with her partner and kids, and is a firm believer in letting your freak flag fly. She can be found at www.jillayna.com. More from this author →