I Can Hear You Whisper (2 page)

 • • • 

On a night like many others that cold January, I was making dinner while the boys played in and around the kitchen. I heard my husband's key in the lock. Jake and Matthew tore down the long, narrow hall toward the door. “Daddy! Daddy! Daddy!” they cried and flung themselves at Mark before he was all the way inside.

I turned and looked at Alex. He was still sitting on the kitchen floor, his back to the door, fully engaged in rolling a toy truck into a tower of blocks. A raw, sharp ache hit my gut. Taking a deep breath, I bent down, tapped Alex on the shoulder and, when he looked up, pointed at the pandemonium down the hall. His gaze followed my finger. When he spotted Mark, he leapt up and raced into his arms.

“It's the fluid,” I said to myself. “It's the fluid.”

The next day, when I went to pick him up from day care, it happened again. I could see him across the room as I came through the gate.

“Hi, Alex,” I called. “Hey, buddy, it's Mommy.”

He didn't look up or stop playing. The teacher standing next to him said, “Alex, Mommy's here.” Nothing. She tapped his shoulder and only then did he look up. His face lit up when he saw me, and he came running to greet me. The teacher and I looked at each other, and I looked away, embarrassed by the awkward intimacy of sharing this terrible moment.

He had never been this obviously unresponsive.

A few days later, on a snowy Sunday, the first in February, I was standing in a Manhattan theater lobby with Mark when my cell phone rang. It was Linda, the cognitive therapist who'd been working with Alex for a few months by then. She had been convinced that hearing wasn't the problem. There were good reasons to think that—Alex had compensated well—and she was not alone in her opinion. “I don't think he can hear,” she said now, “at least not well.”

I knew that she was right—and that it wasn't just the fluid. Having someone in a position of authority say it out loud allowed me to do the same. The problem now had hard edges, like the difference between worrying about paying the bills and realizing you have to sell your home.

It was twilight as Mark and I left the theater. The snowstorm had momentarily hushed the din of Manhattan. The snow, the buildings, and the sky were washed a dusky blue-gray. Here and there, streetlights sparkled, but their halos blurred and fuzzed before me as I started to cry.

Shock, fear, bewilderment, love. A levee had burst and pent-up emotion flooded through me. Unsteadily, I clung to Mark's arm and blurted out just a few of my frantic questions.

“What will this mean? What will his life be like?” Tears streamed down my cheeks. “How will I talk to my son?” And then, “How could I not have known?”

“If it had been obvious, we would have known,” Mark insisted.

“We'll do whatever we have to do,” he added with more certainty than I think he felt.

 • • • 

We both knew that most of the doing would fall to me. Mark worked twelve hours a day, longer if he was traveling or had business dinners in the evenings. I had been about to return to work, but those plans were now on hold.

With the next hearing test just days away, I scheduled a speech and language evaluation with a therapist in our neighborhood. Her carpeted office was on the garden floor of a brownstone, which put the small windows at sidewalk level. I sat in a child-size chair and Alex stood at the child-size table. The therapist pulled down some cars and a Mr. Potato Head. An evaluation for a child of twenty-one months consists of play and pictures. Out of four pictures of animals, for instance, the therapist might ask a child to “show me the horse.” Or, with a line of toy cars on the desk, she might ask the child to “make the green one go.” In order to be sure a child is using only hearing, testers sometimes cover the lower half of their faces with a shield, a wooden hoop with a piece of black fabric stretched across it.

When words and instructions were presented to Alex in this way, with the speaker's mouth hidden behind the hoop, it was a disaster. Until that moment, I hadn't realized just how many visual cues we'd been providing him. Every time we told him to wave bye-bye, for instance, we waved our own hands. As the therapist worked her way through the evaluation, Alex became more and more confused. He wasn't a child who fussed or acted out. He just went still. Quiet and staring, he searched her face and mine for some hint of what was being asked of him. I tried for a reassuring smile, then turned my gaze to the little window to hide the emotion welling up. A stroller went by followed by a pair of black boots. “Do you want some juice?” I heard the woman say to the child.

What stayed with me from the therapist's report of that day were the measures of how Alex was doing relative to other children his age. He was in the second and eighth percentiles respectively for what he could understand (receptive language) and what he could say (expressive language). Overall, 97 percent of almost-two-year-olds had more language than he did. The only good news was that a substantial hearing loss would explain everything he couldn't do and how a child who seemed relatively bright—as measured by the way he played with toys and observed what was going on around him—could have such gaping holes in his abilities and knowledge. It explained why he couldn't point to the cow in
Goodnight Moon
.

The songs I sang at bedtime had been silent for him. Every night I had whispered in his ear “I love you.” I don't think he ever heard me.

“I need to know everything there is to know about ears,” I told myself at first.

It wasn't that simple. Hearing, through sound, I soon realized, is inextricably linked to spoken language and through language to literacy. I set out to understand ears, but I ended up exploring the brain. I wanted to know what hearing meant for Alex, and found myself grappling with the scientific, developmental, and cultural implications of how to use what we know about sound and language. Alex's ears, in every sense, were just the beginning.

I
had never met a young person who was deaf or hard of hearing. At least so far as I knew. I was disconcerted by my ignorance but not alone in it.
Two or three in a thousand babies are born deaf and one in two hundred loses some hearing by the age of three. More than 95 percent of such babies have hearing parents. For many of those parents, as for me, their own child is the first deaf or hard-of-hearing young person they have ever known.

As word of what was going on filtered out to family and friends, I got a call one winter day from a distant acquaintance. She had a daughter with hearing loss who was in middle school in Manhattan. We spoke for an hour and a half.

“What's his audiogram?” Karen asked.

I hesitated. “I don't know yet.” Then I confessed I didn't really know what an audiogram was. She explained that it was the graph of Alex's hearing that his audiologist would create.

“Everything depends on the audiogram,” she said.

Then we talked about speech therapy.

“Have you considered option schools?” Karen asked.

Another pause. “What's an option school?” I asked. In New York City, she said, there were now specialized preschools for children with hearing loss. These were known as option schools.

And so it went. I responded to every one of her questions with two or three of my own. At first, Karen's information felt enormously helpful. Then, almost mid-sentence, it was overwhelming. I stopped taking notes, lay back on the couch, and stared at the ceiling as her suggestions swirled in my head. Which school. What to say to teachers. What to say to other parents. Which kind of speech therapy. What health insurance covered. What it didn't. What early intervention provided. What it didn't. Psychologists and social events for kids and families. Bus transportation. (Bus transportation! Alex wasn't even two yet, but the specialized schools were far away.)

Karen must have guessed what was happening at my end of the line, because she soon said, “Why don't I send you some books I have and you can call or e-mail me with any other questions after you've read them.”

I thanked her and hung up. A box of books and pamphlets arrived the next week. Karen and her husband had chosen a speaking and listening approach for their daughter, and the material she sent reflected that—books with titles like
Early Language
and
The Words They Need
. When I'd asked her about sign language, she told me that the view of many in the oral deaf world was that American Sign Language (ASL) delayed the acquisition of spoken language. I would find out just how controversial that idea was.

 • • • 

For those born into deaf families, the experience is radically different.
Sam Supalla, a storyteller and filmmaker who is deaf, had deaf parents and two deaf brothers as well as a brother who was hard of hearing. In a book about deaf experience, I found Supalla's description of an early friendship with a little girl who lived next door. They were about the same age and began to play together occasionally. Sam enjoyed her company, but there was the problem of her “strangeness.” She didn't seem to understand him at all the way his family did, not even the crudest gesture. “After a few futile attempts to converse, he gave up and instead pointed when he wanted something, or simply dragged her along with him if he wanted to go somewhere,” I read. “One day, Sam remembers vividly, he finally understood that his friend was indeed odd. They were playing in her home, when suddenly her mother walked up to them and animatedly began to move her mouth. As if by magic, the girl picked up a dollhouse and moved it to another place. Sam was mystified and went home to ask his mother about exactly what kind of affliction the girl next door had. His mother explained that she was hearing and because of this did not know how to sign; instead she and her mother talk: They move their mouths to communicate with each other. Sam then asked if this girl and her family were the only ones ‘like that.' His mother explained that no, in fact, nearly everyone else was like the neighbors. It was his own family that was unusual.”

 • • • 

So what did I know about this unusual world? Most of it could be reduced to a few cultural references:
Children of a Lesser God
, Dr. Benton's son on
ER
, Heather Whitestone as Miss America, Marlee Matlin on
The West Wing
. Beyond that, I had a sense of the
deaf community's pride. I remembered news articles about student protests at Gallaudet, the deaf university in Washington, DC. I also knew there was controversy over cochlear implants, the revolutionary devices that enabled the deaf to hear. Here again, my knowledge came mainly from a film, the Oscar-nominated documentary
Sound and Fury
, which had been released a few years earlier. It followed the painful debate within the Artinian family over whether to get the prostheses. One brother and his wife—Peter and Nita, both deaf—were leery of the implant. After much soul-searching and exploration, they chose not to get one for their six-year-old daughter, although she wanted one, or for their two younger children. Peter's brother, Chris, and his wife, Mari—both hearing—chose an implant for their son Peter when he was born deaf. Peter and Chris's parents are hearing. Mari's are deaf. The hearing grandparents, particularly Peter and Chris's mother, pushed hard for the implant and were devastated by Peter and Nita's decision against it. Mari's deaf parents were equally distraught over her decision for the implant. The wrenching story of this divided family moved me, but it seemed far removed from my life.

I wasn't facing exactly the same decisions even now. We didn't yet know how much Alex could hear. I did know a few movies and newspaper articles weren't much to go on. So I started reading. Whenever I could find a quiet moment during the day or after the boys were in bed, I planted myself at my computer in our second-floor study and searched the Internet. I was looking for information, of course, but also for something more. Perhaps for comfort. My newly created file, marked “Alex—Hearing,” grew fat with printouts from the American Speech-Language-Hearing Association, the League for the Hard of Hearing, the National Association of the Deaf, the National Institute on Deafness and Other Communication Disorders, and any hospital or advocacy group I could find with something else to tell me. On a pad of paper next to my keyboard, I scribbled questions.

“What is an ABR?” I wrote on the night I focused on hearing tests. Under that, I noted “bone conduction?”

The next day, I was fixated on assistive devices. “What is an FM?” I wrote. “What do hearing aids for a little guy look like?”

“ASL—where?” I wrote on another night.

Quickly, I learned just how much variety the terms “deaf” and “hard of hearing” encompassed. Audiologically speaking, hearing loss could be categorized as mild, moderate, severe, or profound, but its specifics, measured in thresholds and frequencies, were nearly as individual as fingerprints. To divide the world into deaf and hearing seemed like calling a thoroughly mixed-race society like Trinidad or Brazil simply black and white.

However much a person could hear, there was another, more personal distinction: how that person chose to be identified.
You could be deaf or Deaf. A small “d” referred to the audiological condition of limited hearing; the big “D” indicated someone who was part of a group that shared a language—American Sign Language in the United States—and a culture. The distinction reached far beyond spelling; it was the difference between thinking about deafness through a medical model or a social model, the difference, as Andrew Solomon later described it in
Far from the Tree
, between illness and identity. There was a long list of terms and ideas to run through this filter. “Hard of hearing,” which I initially thought old-fashioned, was the preferred term within the Deaf community for someone with residual hearing. “Hearing impaired” was commonly used in medical pamphlets and some government literature, but the National Association of the Deaf (NAD), the primary advocacy group for ASL and Deaf culture, viewed the term as “well-meaning” but “negative” for its emphasis on what a person
cannot
do. On the same grounds, they objected to the term “hearing loss,” although it can be hard to talk about audiology without using that term, I find. You need a noun. Another common distinction concerned the age of onset of deafness. Adults who lose their hearing are “late-deafened,” indicating an early life lived in the hearing world. And then there was “oral deaf,” the category of deaf and hard-of-hearing people who chose to communicate through “listening and spoken language.” They had an advocacy group of their own, the Alexander Graham Bell Association (known as AG Bell)—an antagonist, it seemed, of the NAD.

Later, when I got to know some deaf adults, they repeatedly told me, “There's nothing ‘wrong' with Alex.” It was a thought-provoking and startling statement, as if I saw the sky as blue and they saw it as green. As soon as they said it, I saw the dangers of the word “wrong,” its potential to wound. I hadn't meant it as a broad pathologizing of my precious son but very specifically that there was something in the way Alex's ears worked that prevented him from hearing and that might prevent him from learning to talk. And I meant that that fact worried me. Deaf culture used a completely different vocabulary to describe the same set of facts. Or maybe it was describing a different set of facts. Our perceptions are based on our own experiences. I once read about
a tribe in Namibia whose members distinguish between shades of green more easily than between green and blue. Could it be that in a hearing person's view the sky of deafness appears to be blue and for Deaf that sky looks green?

“
For hearing people, the world becomes known through sound,” wrote Carol Padden and Tom Humphries, professors of communication at the University of California, San Diego, who are both deaf. “Sound is a comfortable and familiar means of orienting oneself to the world. And its loss disrupts the way the world can be known.” Deaf people, say Padden and Humphries, have
a different center.

They do, however, occasionally turn sound on hearing people, as in this classic deaf joke:

A Deaf couple check into a motel. They retire early. In the middle of the night, the wife wakes her husband, complaining of a headache, and asks him to go to the car and get some aspirin from the glove compartment. Groggy with sleep, he struggles to get up, puts on his robe, and goes out of the room to his car. He finds the aspirin and, with the bottle in hand, he turns toward the motel. But he cannot remember which room is his. After thinking a moment, he returns to the car, places his hand on the horn, holds it down, and waits. Very quickly, the motel rooms light up—all but one. It's his wife's room, of course. He locks up his car and heads toward the room without a light.

The joke is not on the Deaf man, of course. “He knows he can count on hearing people to be extraordinarily attentive to sound—to his gain and their detriment,” note the authors. More aggressively, when Deaf people want to insult each other, they can't do much worse than to accuse someone of
THINK-HEARING
.

But I am hearing. I laughed at the motel joke when I came across it, but I do use sound to orient myself in the world. I couldn't just undo a lifetime of hearing overnight. Nor was I sure I should. Sound allows us to do some remarkable things.

What I did acknowledge was that words and labels have power, and there is also power in the right to choose those labels oneself. That there were so many possibilities within the Deaf world revealed a complicated history that would take time to probe but that was brimming with both the pride and the tension of which I'd been only vaguely aware.

 • • • 

I could see that how deaf and hard-of-hearing children should be educated and, more fundamentally, how they should communicate are critical questions. “
Deafness as such is not the affliction,” wrote neurologist Oliver Sacks, “affliction enters with the breakdown of communication and language.” Without communication, there can be no education. Communication provides contact and connection, a means of coming together. It allows the sharing of ideas and information. “
Language really does take us everywhere,” neuroscientist Paula Tallal of Rutgers University, who studies children with language impairments, has said. “If we think about what makes us human and makes us able to function differently, ultimately, it is language; first of all language and of course subsequently written language. From the time we're born, our interaction with our parents, our interaction with peers, our interactions with our sense of self are very wrapped up with the language system.”

By “language,” I had always taken for granted that one meant “speech.”

I certainly took it for granted in my parenting. Until Alex forced me to think about it, I hadn't realized just how much I parent with my voice. I soothe and cajole, read and sing, teach and explain, reprimand, and occasionally yell. It's how I hand down whatever wisdom I have, and how I answer questions, drum up interest, urge compassion, and encourage diligence.

Could I do all that for Alex through sign language? If I were fluent in ASL, maybe. A language that Sacks described as “
equally suitable for making love or speeches, for flirtation or mathematics” was no doubt also suitable for mothering. But the idea of raising a child in what to me was a foreign language was daunting. If we were to communicate in ASL, being hearing parents was a distinct disadvantage. Mark and I would be starting at the beginning, like babies, only—unlike babies—with brains that were no longer optimized for learning a new language.

As it happened, at that very moment, baby sign language was all the rage among the stay-at-home mothers of Brooklyn, including some of my good friends who thought signing would bolster their hearing children's communication skills and who urged me to try their videos. This did not encourage me. Actually, it annoyed me. Faced with a child who might truly be deaf, I thought the idea of baby sign classes ridiculous and, in our case, of no more use than a knife in a gunfight. If we were going to learn to sign, we were going to have to go all-in. If I could have seen past my own prickly defenses, I might have found something useful, if limited, in those videos. After all, we had to start somewhere. I did use a handful of signs like
MORE
and
MILK
for a time, but I didn't investigate further because I got my back up about it. I didn't shout, “You have no fucking idea what I'm dealing with!” I took the brave passive-aggressive approach of ignoring baby sign language instead.