Knowing Grace – Culture, Identity, and Evolution

We live in Washington, DC, where we are fortunate to have access to many resources for deaf children and their families. One of these was the parent infant program, called PIP, at Gallaudet University, where we were welcomed with warmth and understanding when Grace was a baby. In the midst of my overwhelming sense of loss and confusion, and my struggle over how best to help my daughter, I had, in the Deaf community, an option for solace. It was a loving place, full of noise (yes, really), and language – the hands flying fast around me, and a true sense of family. Twice a week I brought Grace to the sunny classroom full of babies and toddlers who were deaf and hard-of-hearing. I became friends with other parents, both hearing and deaf. I hungrily learned American Sign Language (ASL), desperate to have some way to communicate with my daughter.

She was a happy, healthy, incredibly alert little person, our Grace. And from a very early age, it became clear that she possessed a unique desire to connect. With everyone. Her pediatrician began to call her “the Mayor” because each time we came to the office, Grace peered intensely at every person she passed with a smile and a wave, inviting them, demanding sweetly, that they engage with her. She was hungry for input, contact, connection.

As I learned to sign, I incorporated more and more of the visual language into our interactions. When she was about nine months old, I remember signing to her, “Where is the frog?” She looked around and spotted the open picture book on the bed, and pointed to the page with the fat green frog.

I found great comfort in having a way to connect and communicate with Grace.

But I was still struggling to overcome a lingering, persistent sadness. I worried constantly about what life would be like for her. How would my family ever truly know her? Would she forever be the girl sitting quietly in the corner, cut off from the world? Would she struggle with reading and writing, the way I was learning so many deaf children (and deaf adults) do? How would I ever be able to discuss nuanced challenging subjects with her in a language that was not my native one? I felt as though a thick wall of fog had grown up between us, and I was constantly slashing at it, trying to reach her.

As I began to feel more at home at PIP, my anxiety became focused on another source of conflict. I had begun to learn about cochlear implants – devices that convert acoustic sound to electric signals and transmit them into the inner ear, enabling the deaf to access interpreted sound. It was 2002. The technology had gotten extremely good, the FDA had begun approving surgery for younger children than they had previously, and more parents, in particular hearing parents, were opting to provide cochlear implants to their deaf children. A rapidly growing body of research indicated that children, especially those implanted early, could have extremely positive results, though there was plenty of variation in the findings.

From my husband's perspective, a cochlear implant was the only option. More technologically savvy than I, more pragmatic in his approach to just about everything, he thought only about the “when” for Grace’s surgery. I was still caught up on the “if.” Spending so much time at Gallaudet had influenced my understanding of who Grace was. I feared that somehow, if we implanted Grace, we would be depriving her of her opportunity to be who she had been born to be. We would be fundamentally changing her. I couldn’t get the phrase “tampering with her essence” out of my head. One of my friends at the parent infant program, a Deaf father I had grown to respect and admire for his intelligence and loving parenting style, begged me not to go ahead with the surgery. “It doesn’t work,” he signed to me. “She could have permanent facial paralysis if they botch the surgery. Life will be so hard for her.”

And there was more, although he did not say it. I had come to understand why he, and so many Deaf adults, had such a negative view of implants. They felt that when hearing parents chose implants for their children, it was as if the parents were saying, “Your life is not good enough for my child. I want her to be more like me. I want her to be less like you.” There were warnings that deaf children with CIs would find themselves stranded between two worlds: sidelined from the Deaf world, which was wary of and offended by the technology, and which couldn’t embrace those who chose to speak instead of sign; and unable to master the hearing one, in which it was feared they would struggle to make sense of all the noise, and would live an exhausting and frustrating life. To some in the Deaf community, implanting a deaf child was akin to bleaching the skin of an African American child so that they could “pass” as white. Considered in this light, it was no wonder so many Deaf people were fighting mad.

I’d been catapulted into the middle of a culture war. I was terrified. The idea of messing with Grace’s identity in such a concrete, permanent, invasive way was indescribably difficult for me. I desperately wished that Grace could decide for herself whether or not to get a CI. But I was fast learning that waiting until Grace was old enough to make the decision for herself would eliminate nearly all of the linguistic benefits that having a CI could offer. If we were going to do this, we were going to have to make the decision for her. Now.

When Grace was eleven months old, she underwent CI surgery. Three weeks later, her CI was “activated” and she heard her first sounds. Within weeks, she began responding to the auditory world in a way that clearly showed she was already figuring things out. Her trajectory was remarkable and inspiring: by the time she was eighteen months old, she had already caught up to, and was surpassing, her hearing peers in both receptive and expressive language.

What was also clear to me, from the moment she woke up from her long post-surgical sleep, smiling and intense, was that she was still herself. Everything that made her amazing, unique, everything that made her Grace, was intact. Only now, she would come to understand not just my hands, but my spoken words.

When Grace was ten years old, I read Far From The Tree, by Andrew Solomon. It is centered on the concept of “horizontal identity”: The idea that, in some unique circumstances, children turn out to be critically different from their parents. The second chapter, Deaf, explores horizontal identity in the very context Jason and I had found ourselves in, as the hearing parents of a deaf child. As I read, my old feelings of deep anxiety about having Grace implanted resurfaced.

The night I finished the chapter, I went into Grace’s room. She was sitting on her bed, engrossed in her own book. She hadn’t yet taken off her CI processors for the night, hadn’t slipped into that peaceful silence she gets to experience when it is time to shut down and sleep.

“Hey, Grace,” I said. “Can I ask you something?”

She turned her gaze up to me and said, “Sure.”

“Do you ever wish that dad and I hadn’t chosen to have you implanted? That we had just left your ears alone?”

She gave me such a quizzical smile, and said, “Why would I wish that?”

“Well,” I said, “Because in a way, by getting you implanted, it was like saying we wanted you to be different than you were. That we wanted you to be more like us.”

After a brief moment, she said, “You did it to help me mom. I still have a deaf personality.”

I was so taken aback by the ease and pointedness of her response that I didn’t think to ask her what that meant. A “deaf personality.”

But I think, now, that I understand: she knows she is deaf, and when she thinks of herself, this is part of the picture she sees. We haven’t altered her essence. We have just helped her, by providing her with the tools she needs to thrive in a world from which she would otherwise be shut out. A world she has always seemed to want very much to be a part of.

As more and more families opt to go down the challenging and rewarding road of implantation, it means that fewer children will be feeding into the signing Deaf community. Already, the Deaf community is becoming more accepting of cochlear implants. It is my great hope that this trend will continue, that Deaf culture will continue to evolve and expand, and that people like Grace can feel a part of it.

Of course, I am just one parent, of one deaf girl. My view is by default a narrow, and personal, and hopeful one. Someday, though, perhaps Grace can help shape the path, help pave the way for defining a new Deaf identity.

For now, I just celebrate how happy and full of life she is. Now, she knows my voice. She knows the chirp of a cardinal, the cry of her baby cousin, the tapping of the rain. She can rush downstairs in the morning so she has time to listen, again, to Radiohead’s Karma Police before she heads out the door to school. And she still relishes every opportunity she gets to connect in meaningful ways with those around her. She is many things, her identity is a beautiful and complex landscape of color and light. She is an athlete, a reader, and a friend. She is a beloved family member, a leader, and a muse. And, she is a deaf girl who can hear.

With gratitude to Judy and Peter Kugel for their masterful editing help with this article