What Was Lost When My Daughter Gained Sound

Goodbye, Mermaids by Christie Chapman

“Fairy tales since the beginning of recorded time, and perhaps earlier, have been a means to conquer the terrors of mankind through metaphor.” – Jack Zipes, folklorist

“For me, it is far better to grasp the Universe as it really is than to persist in delusion, however satisfying and reassuring.” – Carl Sagan, scientist

Wind brushed the trees, like a mother brushing the long flowy hair of a can’t-sit-still little one. My baby daughter, who was born deaf, and I lay on the soft carpeted floor of our townhouse and watched through the sliding glass door. The sight was peaceful, hushed (for me) by the glass, the slim waving branches like arms conducting a silent orchestra. I said to my daughter (out loud, out of habit; I was still learning her language): “Is this what the world is like for you?”

Later I stood and slid open the door. As a hearing person, accustomed to thinking of sound as beautiful, I wanted to sense the wind in this way, too. I pushed aside the glass and let it in. The roar seemed angry, agitated. I thought of giants from fairy tales, the tiger-headed guardian at the Cave of Wonders where the genie resides. “Who dares disturb my slumber?”

The Princess and the Frog

When a child arrives outside the norm—a selkie, a fae changeling; or, to be more mundane, a baby with a disability—some parents cling to facts. These feel like grip-holds as you scale a sheer cliff face, as your fingertips pinken and pulse, as your foot slips and sparkling rock dust scatters far below.

Fact: The medical community uses the caduceus as its symbol, two snakes twined around a winged staff. Even though there’s a snake, its members take an oath: “First, do no harm.”

We brought our daughter in for the six-hour cochlear-implants surgery when she was 13 months old. Tiny blue hospital gown, treaded socks in the smallest size that were still comically large on her. She carried her frog puppet into the operating room with her. She wasn’t supposed to, but the doctors broke protocol because she was scared.

After the surgery, as my husband and I hurried through antiseptic halls to see her, I heard a foreign, ragged cry. “Whose baby is that?” I thought. I saw a drugged, hungry baby flailing in the arms of a nurse who was not her mother. The tight-wrapped gauze bandage pushed down on my daughter’s brow so she looked like a tiny Neanderthal. My first, irrational thought: “What have you done to my baby?”

We spent the night at the hospital. A sweet nurse turned the TV to a station that just shows digital stars after 9:30 p.m., white specks zooming through blackness. The bandage on my daughter’s head was tied in a way that gave her Princess Leia buns, one over each side where her brain had been invaded.

Villainy

From Aladdin’s Jafar and the thumb-sucking lion king of Robin Hood to latter-day Slytherin, snakes are aligned with villains. When Harry Potter’s friends realize he’s a Parselmouth, fluent in the language of serpents, they regard him with suspicion and fear.

The old ASL sign for “cochlear implant,” I’m told, was a snake sinking its fangs into a person’s skull. This is how maligned the devices once were in the Deaf community, and still are for some. Far more than hearing aids, which do not require surgery, cochlear implants are seen as brain-damagers (even as the technology has improved) and culture-erasers (especially since the technology has improved, and the devices have become more common, leaving fewer people reliant on ASL).

The current sign for “cochlear implants” still looks like this to me, although supposedly it has changed. To make both signs, you crook two fingers and stab them at your head. In one case, the handshape simply replicates the bent-over-the-ear device. In the other, it’s a deadly bite.

The difference in meaning depends on how you interpret it.

Quest

Before my daughter’s surgery, I searched. I wanted to make sure we were making the right choice.

Fact: A Google search for the terms “cochlear implants” and “child abuse” brings up many articles that contain both.

Years ago, while walking to my then-workplace in Washington, DC, I saw a protest: Deaf people with signs saying deafness is not a disability, not a flaw to be fixed. I mentioned this to people at the time, mystified. Now I’m not mystified. I get it: They say the issue is systemic; they are a linguistic minority who are rarely accommodated.

After all, deafness does not hurt. Deafness does not cut your life short. In this way it’s separate from other abnormalities—minorities—of the body. Your deaf kid could live a happy life if the world would just cooperate. No need to get a scalpel involved.

Fact: A Google search for the terms “cochlear implants” and “cultural genocide” brings up many articles that contain both.

When our daughter was six months old—before the surgery—my husband and I brought her to an ASL-immersive program for deaf babies and their parents at Gallaudet, a university humming with deaf students and staff. We stayed in this program for two years, including after the surgery. Some of the deaf babies got “the surgery,” others did not. Some families chose not to get the surgery; a few babies weren’t eligible for medical reasons (no auditory nerves to make the devices work). It was an omnipresent topic for the parents.

Three of my daughter’s classmates had two deaf parents each, entirely deaf families, some with deaf siblings. A classmate’s father told us—through an interpreter—that he and his wife had emphatically told their doctor: “No surgery.” They had the doctor put a note in their daughter’s file. The father was a professor at Gallaudet; his wife was an administrator there.

Fact: ASL uses different syntax than English; typically, the most urgent item in a sentence comes first. I’ll try to approximate it here: Surgery, all Deaf people? = Deaf people—all-gone. Deaf people all-gone? = Deaf culture all-gone. Gallaudet all-gone. Home all-gone.

Realms

One of the first things my husband and I learned about after our daughter’s diagnosis was “big-D Deaf” versus “little-d deaf.” “Big-D Deaf” refers to a culture, a language that’s signed. A hearing child of Deaf parents who use sign language at home would be considered Deaf—that hearing child is part of the Deaf world, a citizen of the Deaf community. “Little-d deaf” is a medical term. You could be medically deaf but raised apart from the Deaf community, using your voice and devices, and no signs—you are deaf, but not Deaf. 

You could be both. These can overlap. My daughter is deaf—in the paperwork at her “mainstream” school, where all of her classmates are hearing; at the audiologist’s office, where the focus is on the sounds she’s able to perceive with her devices. And, as someone who relies on sign language for part of the day, when her devices give her fatigue; as someone who’s connected to the local Deaf community, thanks to various programs we’ve participated in—she’s also Deaf, even though she has cochlear implants and chatters away vocally like any hearing child.

As a hearing parent who has spent my life in the hearing world, and still has my hearing, I will never be Deaf. Unless one day I am deaf—if, say, I lose my hearing in old age, and switch over to sign language. (A “CODA” is a hearing Child of Deaf Adults. According to the comments sections of Deaf influencers I follow on Instagram, there is no such term for parents of a Deaf child.)

At times it all sounds like a riddle, or the baseball joke about “Who’s on first?”

In this way, my daughter and I will always be native citizens of two different worlds. 

Instruction Manual

At the heart of this divide are these banal devices. Pieces of them sit in our kitchen right now, their batteries screwed into a charger, on a shelf that also holds cookbooks and bags of chips—part of a domestic tableau, as unassuming as a block of knives.

The devices are ugly, if you go by sight alone. They would look at home encased in glass at a drab museum about some closed-down sanitarium. Band-Aid beige, the color of old nurse shoes and grandma undergarments. Yet in one way they’re beautiful: We chose the color that most closely matches my daughter’s hair. (Viewed in this light, they take on the color of sandcastles, or a butterscotch-topped treat on a summer day.) 

They’re clunky, on her head, as she goes about her day; in the age of nanotechnology, you would think we’d have a stealthier design. Inspector Gadget head, especially when she was a baby, before her hair grew out to hide them. Too many components, like something you’d need a thick instruction manual for—we needed an instruction manual, when they were new to our household.

The parts that conspire to bring my daughter sound: A flat, round outer magnet like a poker chip, connected to a short cord. The other end of the cord connects to the “processor,” a vaguely snail-shaped hunk of plastic that hooks over the ear; this is the part a medical expert must program, the part that costs a million bucks, give or take, if you lose it, say, in the ocean. Attached to that is a chunky battery you screw on.

And there’s the part you can’t see, another flat, round magnet under the skin on either side of my daughter’s skull. Over the years her hair has grown over these places, like a maiden whose locks conceal an enchantment. Rapunzel, Rapunzel, let down your hair.

Consumer Facts

Sometimes I lean down to kiss my daughter’s hair and kiss beige plastic instead.

I visit the website of the company that makes these devices. I try to read the most basic, dumbed-down articles explaining how they work. This is where I should find reassurance in scientific terms, the language of progress. Instead, I glaze over. Electricity and magic, I conclude. Lightning and pixie dust.

The lights on her processors blink green when they’re working. This is what I need to know. I see the green flashes when she runs around her grandparents’ yard with cousins at night. The others sometimes hold glow sticks and sometimes hold sparklers, depending on the occasion, but my daughter is the one I can always find in the dark. There she is. My firefly. 

What do the devices feel like, to me? Smooth, like a life made easier. What do they smell like? Audiologist waiting rooms, scenes of cheerful complicity. I try to discern a scent other than “plastic,” but my brain gets rerouted and ends up at abstraction. If I try to assign them a personality, they come up void. They’re android by nature. My husband, a computer engineer, says with pride that our daughter has “bionic ears.”

Fact: Vicki, the child robot from a 1980s sitcom called Small Wonder, could shoot electricity into a car to jump-start its engine. She could jump-start a human heart.

Fact: If you ask Google whether a robot can get an MRI, the answer is no, because a typical robot contains ferromagnetic parts, and an MRI machine’s powerful magnet would rip the robot apart in a process troublingly called  “the missile effect.”

Fact: On the seat-belt strap that goes across my daughter’s car seat is a sleeve that says: “No MRI! I have a cochlear implant.” It’s for a potential ambulance crew. She has magnets in her head; an MRI machine could be disastrous, although scientists are now creating implants that are MRI-safe.

Fact: An MRI machine is not the only hostile environment for cochlear implants. When entering water, such as a pool or the ocean, the devices must be shielded inside a case made of plastic.

Fact: Plastic is not natural; the Great Pacific Garbage Patch is a “soup” of microplastics about twice the size of Texas or three times the size of France.

“I Want” Songs

I’ve heard that every Disney princess has a song about what she wants.

A “Faustian bargain” is when a character gives their soul to the devil in exchange for something worldly, and the deal ends in tragedy.

Fact: In the movie The Sound of Metal, a drummer named Ruben loses his hearing and joins a Deaf community that rejects the notion of deafness as a disability. When Ruben secretly undergoes surgery for cochlear implants, to restore the hearing he lost to years of harsh decibels—the community leader, a beloved friend named Joe, asks Ruben to leave.

Fact: At the end of Disney’s animated The Little Mermaid, Ariel stands with Prince Eric on his ship. She’s wearing a wedding dress, waving goodbye to the mer-people she’s left behind, her father and sisters and others. This makes me think of the surgery, of transformation, of realms entered and abandoned. In this light, Ariel appears to me as a traitor.

I realize sirens are associated with their songs, and Ariel bargains her voice for love, going silent to join the human world (not the reverse)—but the mer-folks’ way of life outside the mainstream/human world makes me think of the ocean dwellers as Deaf, the sea witch an unscrupulous surgeon:“Don’t you want to be part of that world? No matter the cost?”

Either way you look at it—when my daughter and I watch the movie, as Prince Eric and Ariel struggle to communicate on their boat date, the dire consequences and ticking clock, we always say: “This could have all been solved if they’d just learned sign language.”

Red Rover

My daughter makes up songs. “Never take our clubhouse away!” she used to caterwaul as a toddler, to the tune of “You Are My Sunshine,” standing guard over her couch-pillow fort in a cowgirl hat and diaper.

Before her surgery, our family went to a Gallaudet homecoming football game. We wanted to immerse our daughter in her culture. One of our ASL teachers, a Texan who had wed his husband in matching cowboy hats, beamed down at my daughter in her stroller and greeted her in their language. They were members of the same tribe, and not just because of the cowboy hats.  

In my daughter’s preschool class for deaf children, she had a little boyfriend named Sami. At recess, he took her hand and gallantly escorted her to the slides, like a prince charming. They held hands and ran laps around the playground, giddily paired up as if in a happily-ever-after. Sami also had the surgery but hated the devices. His parents, both Deaf, signed to him instead of forcing their child to adapt to a world that didn’t feel like home.

Starting in kindergarten, my daughter and Sami attended separate schools—my daughter in a class with hearing kids, Sami at a school for Deaf students. We see Sami’s family each year at an annual picnic for the local Deaf community. For the last two years that we’ve gone to the picnic, my daughter and Sami haven’t recognized each other. They speak different languages now; my husband and I sign to our daughter when her devices are off, but she replies with her voice, knowing we can hear her. She signed as a toddler but has lost her muscle memory.

Fact: In the children’s game “Red Rover,” one team chants for a player from the opposite team to “come over” and break the chain formed by children’s linked hands or arms. The object: You try and cross over to the other side. You try to break through.

Thumbs-Up

A scene: My daughter’s nursery when she was a toddler, bedtime. It’s the weekend, and the neighbors in the townhouse next door are having a party on their back patio. They talk and laugh at a respectable decibel level. My daughter has declined to remove her cochlear-implant processors, not finished hearing for the night. She stands at the backyard-facing nursery window in footie pajamas and the pink-bowed bonnet we use to keep the processors on. She scowls down at the audible mirth below, which she can hear even through the closed window. She looms, disapproving, like the world’s tiniest “Karen,” as if she’s going to report them to the HOA for a noise-ordinance violation.

Another: “Mama, I hear a woodpecker,” my daughter says, registering the percussive drill through hollow wood that resonates through the woods we’re walking through. She’s correct.

Another: While playing with blocks, my daughter shows me a new accessory she’s built for some angular, Lego-dimension character. I say, “Oh, cool pirate hat!” She says: “It’s a pilot hat,” detecting the minuscule difference.

One more: When getting dressed for school in her room upstairs, I hear my daughter sing: “You’re my soda pop! My little soda pop!” I think: From down here, I’d never have known if she’d been signing the song instead. 

I share these scenes on Facebook. They’re easy for my hearing friends to like. People click on the thumbs-up, they click on the heart. Sometimes they even click on the laughing face. 

Deaf Like Me

But there are things I mostly keep to myself, not wanting to seem ungrateful.

Such as: Sometimes I hate this.

How her brain has to work harder than other kids’ to process every word and sound, so that by the end of the schoolday, she’s as tired as if she’s crammed for college exams.

Seeing her run on Field Day, the devices falling off, tripping her up, holding her back. Knowing that having the devices in her life means special equipment forever: Special headbands for P.E., sports, theme-park rides, bounce houses. Special waterproof cases for the beach. A special lanyard with a microphone for her teachers to wear. Everything “special,” like “special education.” My daughter has a sort of extra report card—an IEP—that grades how she’s doing with her disability (if you consider deafness to be one). One category is “self-advocacy.” This means: Does she speak up if she can’t hear?

The constant attention to battery power—are the lights blinking green, or orange? Are her batteries charged? Away from home—did we bring the charger? Forget about living off the grid. Power outages that go on for more than a few hours are cause for panic. We are a family powered by electricity. A modern family. Meet the Jetsons.  

Yet, technical frustrations aside—my daughter seems proud to be Deaf. She says that she’s “rare.” She wants a puppy—a Dalmatian, because so many are deaf. She wants a deaf one. “He’ll be Deaf like me! I can teach him sign language.” 

Fact: A 2020 study presented in the Journal of Veterinary Internal Medicine showed that deafness among Dalmatians in the United Kingdom is in decline “thanks to careful breeding decisions,” which include selecting only hearing dogs to produce puppies.

The Ballad of Land and Sea 

There are times my daughter goes to a place I’m unable to go, even to visit. I can never truly know it as she does. She removes her devices and dives in, able to breathe there. It’s a place beyond foghorn, beyond the churn of waves, beyond whalesong. It’s a slippery place of gestures. I can only reach her through gestures. There was a time when this scared me.

The lights on her devices blink orange when the batteries need to be changed. I used to bolt to the charger for fresh batteries—twist, twist off the old ones; twist, twist on the new ones. Each second in between felt like holding my breath underwater. I wanted to save her from that dark place that was so unknowable for me. It was the only choice I knew.

Now I know she’s okay there. It’s her natural environment. Like an empty nester, I only hope she visits me.

Now I see that in addition to facts, I’ve been clinging to fairy tales. Conquering my terrors through metaphor.

A metaphor: I stand on the shore and wave as my daughter plays in the ocean with others born like her. I can’t join them; I’m a landlubber, a dry-lander. Born with legs instead of a shimmering tail. I stand and hold a big fluffy towel for when she decides to come out. When she emerges—a shape-shifter, thanks to our deal with a sea witch—ready to join me, we wave to those who remain in the water, free from devices and noise. We snap on the devices, nestle them in her sand-colored hair. Her eyes are still blue like the sea. She is sand and sea; she is both.

The lights blink green when they’re working.

Blink, blink. Goodbye, mermaids.