THE CHOICE TO HEAR

By Erin Jang

She could smell the drill. She wanted to throw up.

Three-hundred and sixty-five days of wrestling, of struggling with the same ethical questions over and over in her head and it had come to this, she thought.

The sound of her heels echoed in the sea-green-tiled corridor that led to the cochlear implant surgery room where ear surgeons would spend the next eight hours drilling a hold into her son’s skull to implant a piece of technology that would maybe—just maybe—let her deaf child hear.

She felt very alone. The corridor seemed too wide and too cold and especially long to Lisa, and she pulled her one-year-old son closer to her chest. She gently placed her right palm on her child’s head, on the soft spot a little behind his ear and held it there. She closed her eyes as if praying. She was not religious. But she vaguely remembered the story of someone named Abraham (or was it Moses?) who carried his son to the top of a mountain to sacrifice him to God. And in a strange way, she thought, I feel like him. How did he know that what he was doing was right?

And then the year’s worth of indecision and progression of emotions attached to that returned as if her mind thumbed through a cartoon flip book, in the way people she saw on daytime talk shows said they died and came back to life, and claimed that in the space between death and life or life and death they saw their lives as an incredible slide show, transpiring as quick as light.

The last time she had prayed, if any form of talking to God is prayer, was when she cursed God for making Ryan deaf. She remembered the day after giving birth to her son, the doctors told her and her husband that Ryan was deaf. Then, she cried for several months and did not speak to her husband for several days. She still cried sometimes.

The doctors told Lisa and her husband about cochlear implants. They used their big doctor words, she remembered. Cochlear implants, they told her, was an electronic device that could possibly help their son to perceive sound and hear.

The implant would involve an invasive procedure, where a small receiver would be implanted in the mastoid bone behind the ear. They would need to drill a hole in the skull to surgically insert electrodes, which transmit electric waves based on sound waves, into the cochlea (the snail-shaped organ found deep in the inner ear). After a month of healing, they said, Ryan could then be fitted with an ear-level microphone and a transmitting cord that would be connected, by a cord, to a speech processor worn on the waist or on the back like a knapsack, under the shirt. Lisa remembered that in that conversation with the doctors, all she really heard was, “It can help your son hear.”

It seemed like an obvious solution. But the doctors warned that the implant was not a cure; just the having the surgery alone would not mean Ryan would understand and communicate with her and her husband. The implant by itself only would allow Ryan to hear noise. To make sense of the sounds transmitted to him by his implant, and to communicate and function like a hearing person would require many years of costly and extensive, intense speech therapy, auditory training and rehabilitation. Doctors told Lisa and her husband that getting the implant for Ryan would be a difficult decision. The surgery alone would cost around $50,000, not including the years of therapy, rehabilitation and constant upkeep of the implant, such as extra parts and doctor check-ups.

Then the doctors told Lisa and her husband that if they did choose to get the implant for their son, they would have to consider doing it at as early of an age as possible. In order for the cochlear implant to be most beneficial and effective—for a deaf child to hear and talk and understand as a hearing person—the earlier the child is implanted, the better, since most language acquisition occurs even as early as age two. So waiting for Ryan to grow up and make his own decision to get the implant surgery would not be an option.

Audiologists told Lisa and her husband the Federal Drug Administration had, in recent years, approved the cochlear implant surgery for children as young as 12 months old, giving the parents the go-ahead to implant their children without their children’s consent. So in a year, Ryan could get this surgery.

But there was the problem of deciding to give Ryan this implant: was it fair for Lisa and her husband, both hearing parents, to decide Ryan’s future? By giving Ryan the implant at an early age, they could be doing what they felt was their job as good parents—by giving him the best opportunity to live successfully as a “normal” hearing person in the “normal” hearing world. Plus, they would be able to communicate with him using oral speech instead of having to transition their whole family context into the Deaf community and world of sign. If we live in the Deaf world, it would be like moving to a totally different country, Lisa remembered thinking at the time.

But by giving Ryan the implant at 12 months, Lisa and her husband could also be denying Ryan a full identity as a Deaf person. It would be like changing their son’s skin color, race, and choice of language without his permission. If he had an implant, the Deaf community would never accept him, because many culturally Deaf people would see his implant as a slap in the face—an outright rejection of participation in Deaf culture and community, a message that he did not respect his own identity (or theirs) as a deaf person.

And what if the cochlear implant did not help Ryan hear and speak as well as a “normal” hearing person after all? Then what? Then we would have made Ryan turn into an outsider. We would have turned him into a social freak, neither accepted as a normal hearing person nor accepted as Deaf in the Deaf community because of the stigma of the implant we gave him, Lisa had thought then.

In a year, Lisa and her husband would need to make this decision: would they raise Ryan in the Deaf world or the hearing world? This was the core ethical choice they had to make.

Lisa now remembered, in quick scenes, moments from the past year as she and her husband tried to decide what would be best for Ryan. She remembered the first few months, after hearing Ryan was deaf, staying up late at night with her husband, poring over websites and web boards about the ethical controversy between Deaf and hearing communities over the cochlear implant. Sometimes they stayed up all night and did not sleep.

They learned about Deaf culture and Deaf pride in having their own language and self-sufficient, rich community. They took sign language classes. Lisa remembered reading that many in the Deaf community saw cochlear implants as a means for technology to manipulate and turn deaf people into machines and she remembered feeling, for a couple weeks, like maybe not getting the implant would be best for Ryan. Maybe developing their son’s Deaf identity and only communicating with him in sign language would be in his best interest.

Lisa remembered making Deaf friends through her sign classes and asking them about cochlear implants and their cold responses. She remembered the pain she felt when her sign language instructor signed, “I am very disappointed you are considering the implant,” after Lisa told her about Ryan. She still feels pain when she thinks about that conversation.

She remembered shuddering when she heard horror stories from parents with cochlear-implanted children, of how Deaf people would accost them in a public restaurant, point to their implanted child’s speech processor and ask, “How could you do this to your child?”

But then she recalled the time she and her husband went to visit a small school for cochlear-implanted children in the outskirts of Boston, and how that visit made everything they wrestled with for many months make sense. In the classrooms they saw five and six-year-olds interacting, laughing, and learning with each other and with the teacher like hearing children. Lisa remembered one child whose back was turned to the teacher. The teacher called his name, “Benjamin!” and asked him a question in a normal, almost even soft, volume. Benjamin, Lisa remembered, did not turn around but continued what he was doing, coloring, and answered the teacher immediately, having heard her address him and having heard her question with ease.

Lisa remembered being amazed at this and almost crying.

She thought of this, as she carried Ryan in her arms toward the surgery room, the sound of her heels still echoing in the corridor.

Clack-clack, went her shoes.

You cannot hear this now, but soon you will, Lisa thought as she lifted her tired hand from the shaved soft spot behind her son’s ear to push open the swinging door of the surgery room.