Chapter 3: Cochlear Implants & Culture Wars, Part II

At an engagement party for my youngest brother, I told a family friend, who is a pediatric oncologist, that I was considering waiting to do the surgery. I told him I was thinking it would be better to hold off until Grace was older, stronger. And he said, “Listen to me. You would be crazy to wait. I know it seems like waiting might be better. Like it would get easier as she gets older. But I promise you it will only get harder. When she’s older, you will have to explain to her why she has to go through this. You will have to explain what is going to happen to her. You will have to tell her honestly that it is likely to hurt. Trust me, do it now.” This was always also Jason’s line of thinking, especially because the evidence consistently indicated that the younger the implant recipient was, the more benefit she would get; waiting meant doing Grace a great disservice and wasting valuable time and brain-capacity for language acquisition. Ultimately, this view of “sooner is better” became my own. But at the time… at the time, I was terrified.

There was a short but significant list of potential side effects to the surgery. The scariest was the risk of permanent facial paralysis, caused by an accidental nicking of the facial nerve during surgery. The doctor assured us that in hundreds of CI surgeries performed by the Johns Hopkins implant staff, this had never happened. But it didn’t matter. I just kept picturing Grace’s face. That smile of hers: that full-faced, gorgeous, radiant smile. A terrifying image stuck in my mind, of Grace, post surgery, with half of her face immobile and slack for the rest of her life. I saw projections of our future, a sense of never-diminishing shame at having done this horrible thing to her lovely face. I was completely haunted by the images of Grace with half of her face rendered essentially lifeless.

Another possible health-related impact of having a cochlear implant is an increased risk of contracting meningitis. Ironically, meningitis is also a prevalent cause of hearing loss. The risk of Grace getting meningitis felt less immediate and scary to me, though – partly because there were preventive vaccines we would use to minimize the likelihood of it happening, and partly because I knew if we were vigilant, we’d see it coming and be able to act on the early symptoms.

There are a few other potential side effects, but most of them, like a change in the way foods taste, dizziness, and discomfort or numbness at the implant site, are almost always temporary.

But I also felt this strange concern that the implantation process, and life with a CI, might take something away from Grace. The deaf experience? A part of herself? Her unconditional, open-armed welcome into the Deaf community? I feared that I’d be stranding her between the hearing world and the deaf one by “forcing” her away from ASL toward spoken language, and by trying to minimize her deafness. A lot of this was borne out of the hours I spent each week immersed in the Deaf community at PIP. I had been welcomed by everyone there. They had patiently adjusted to my faltering sign language, and helped me over and over again as I asked how to sign things, word-by-word. They signed slowly, for my benefit. They repeated themselves when I asked them to. They finger spelled for me – not with the lightning-fast rapidity they used with one another, but with deliberate, exaggerated hand shapes for my novice’s capabilities. They played with my daughter. Smiled as I played with their children. Hugged me when they saw me. Invited us to birthday parties. What would happen after Grace’s implant surgery? How many of them would still think of us as belonging there?

I didn’t name it this way at the time, but my ambivalence about implantation was centered around Grace’s identity. I was unable to set aside the idea that we were changing her, that by inserting the mechanical means to spark her auditory nerve, thus far still and dormant, I would somehow be making Grace less… Grace. I came to think of it as tampering with her essence. I couldn’t shake the idea that by putting sound into her head, where for a year there had been none, and thus altering her neurons, her brain flow, her mind, away from how she’d come into the world and off onto some different trajectory, we were messing around with her spirit, her self. Who was I to determine that Grace should be fundamentally altered?

And yet, what really is the fundamental difference between choosing to implant Grace, and giving a child with incredibly bad vision a good pair of glasses? Is it only just a matter of degrees?

Still, as the day drew near, I became nostalgic for the baby I had grown to love so fiercely. The girl with the broad full smile, eyes crinkly with happiness. My deaf baby. My signing baby. The girl I knew. I was afraid I was somehow upsetting the timeline, the natural direction of her life-as-perhaps-it-was-meant-to-be by flipping the switch on the train tracks and sending her suddenly in a different direction. How would I ever know, once we’d begun pumping sound into her, how much we had changed her – made her into someone other than who she would otherwise have been? What if the joy, the delight, the wonder, the remarkable gaze, the elements that made up Grace’s amazing essence were dependent upon her deafness? And so then what if, by rendering her “less” deaf, we were inadvertently undermining or depleting those essentially Grace qualities?

It is important for me to talk about what I know of Deaf culture, and what I think about it. I do not know if everything I understand to be true is accurate, or even fair. What I am certain of, though, is that being a hearing parent of a deaf child is like standing straddled over two nations who are somehow vastly different despite appearing on the surface to look exactly the same. You stand there, with one foot on each side of the line, holding your kid’s hands, and you’re not really sure where to put her feet. For us, Grace’s deafness was unlike other cultures where clearly your child is born into yours – your religion, ethnic or national background, that convey from generation to generation. Deafness is uniquely different, you do not want to deprive this child of being a part of the culture of deafness. But you do not want to give her over to it either.

A deaf parent of another little girl at Gallaudet – born on the same day as Grace – shared some of her childhood memories with me. She was the person who painted for me the clearest picture of how traumatic life for a deaf little child, born into a hearing family, could be in the 1970s. At the age of three, E had been sent away to a school for the deaf, where she spent the entire week, and was picked up on the weekends by her parents. She remembers long, unbearable nights in the dormitory. She remembers waiting each Friday for her parents to pick her up, terrified that they would not come for her because they had decided they did not want her anymore. She said she’d go home and be unable to take part in any family conversations: her sisters were hearing just like her parents, she was isolated and alone.

This was the way things were for a large percentage of deaf children back then. How could a child sent away so young not feel a sense of isolation and confusion? In many cases, these kids were punished if they were caught signing at school.

Is it any wonder deaf culture grew out of experiences like these? That many deaf adults have no desire to really participate in the hearing world? Can we really be surprised that the Deaf community insists on its independence and likens itself to ethnic cultures – different, not disabled? Pride born from being misunderstood and cast out and capable nonetheless of developing language and combined unity?

I was learning that many deaf adults find cochlear implantation barbaric and insulting. To them, it is seen as a blatant, brutal action that comes from not appreciating a child’s deafness, as trying to change her to be more like us, of depriving her of their opportunity to experience and revel in Deafness.

The Deaf communities’ distaste of cochlear implants is understandable. It got to me. I began to worry, as I weighed our options, what kind of resentment Grace would feel toward me in later life, should we try to force her to fit into the image of a hearing person. I worried that she would feel placeless, homeless, unassociated with others – trapped between the hearing world and the deaf one – never a true part of either. Still, though, this was the choice that really felt like the best option for her. Waiting until she was old enough to decide for herself was unwise – the benefits she would reap from learning to listen NOW were so much greater, it was almost as if waiting until she was older really wasn’t a viable option at all.

I was trying to do now what I had sworn to do the day she was born and I first held her in my arms, wrapped tight against my chest, when I’d promised to her, in whispers I fired like arrows at her heart and her soul, that I would do everything in my power to do right by her. I wanted some sign, some epiphany that would give me the assurance that this was the best decision. But life doesn’t work that way. Of course it doesn’t. Instead, we must listen with our hearts and balance with our heads. Find both the rational argument and a way to mesh it with the gut instinct speaking in wavy whispering voices.