Our youngest daughter stands at the door, knocking loudly. She raises her eyebrows and points to her ear, letting us know that she hears the banging of tiny fist on wood. Her serious expression lets us know that something colossal is about to happen. “Ooopen!” she shouts, and her smile lights up the room. Clapping her little hands, she grins with excitement. At the age of two, Alia has said her first word: open. Just a year ago, this seemingly minor feat seemed unthinkable. Alia is profoundly deaf.
When we first heard the news, my husband and I were overcome with intense grief, as though we had been told that our young daughter was dying. A constant litany of “nevers” began vibrating in our heads. She’ll never speak. She’ll never hear I love you. She’ll never hear her own name. Life was dark as each day represented new hopes dashed, new dreams shattered.
Soon, though, the cloud of anguish lifted as we learned that we had other options. With a cochlear implant and speech therapy, even the profoundly deaf can learn to listen and speak. For us it was an easy choice. After all, everyone in our family can hear; we wanted the same for our daughter.
We soon found out it isn’t that simple. In fact, nothing about raising a deaf child is simple. For every decision you have to make, there is at least one group out there to tell you that you’ve made a mistake. Never in history has a disability had such a polarizing effect on the nation. On the one side of the battle is the Deaf Community, who generally opposes amplification. These people see Deafness (yes, with a capital “D”) as a community, a culture, and not as a disability. They view cochlear implants as a sign of hearing parents refusing to accept their deaf children. They feel that we are selfish for trying to force our children to fit our ideals. On the extreme side, they see cochlear implants as a form of genocide, of trying to wipe out the Deaf. They feel that, rather than trying to fix something that isn’t broken, we should learn sign language and be more accommodating of the Deaf. They believe we as parents should immerse our children in Deaf culture and be prepared to one day relinquish our kids to that community.
On the other side of the argument are the strict oralists. These people believe in amplifying deaf children, either with high-powered hearing aids or with cochlear implants, as soon as possible. The first three years of a child’s life are critical for speech and language development, so it is advantageous to begin speech therapy as soon as the hearing loss is detected. Oralists want the deaf child to function fully in a hearing world, so they generally advise parents to forgo sign language. In Auditory Verbal therapy, a form of oral deaf education, they use the Hand Cue, where therapists cover their mouths to prevent deaf children from reading lips. This forces the children to rely solely on their hearing. This type of therapy has had great results in teaching the deaf to speak. It has produced deaf children who speak as fluently as their hearing peers. In fact, Auditory Verbal students are often mainstreamed by the age of six.
My problem with both of these approaches is that they fail to see the whole person. The Deaf Community focuses on the deafness alone, as though a person is defined solely by his or her listening ability. The oralists tend to focus on the child’s potential — who they can be, what they can accomplish by tomorrow, by next year, by age six. Both the Deaf Community and the oralists focus on one aspect of a person — his or her deafness and their ability to speak, respectively. My daughter is much more than her hearing or her speaking. She is a whole person, with a personality, a heart, and a soul. She has needs, she has rights, and one day, she will have dreams. For now, her father and I dream for her.
We want our daughter to succeed in life, but more than that, we want her to be happy. We want her to be comfortable in her shoes — both pairs, for she is now a member of two distinct communities, the hearing and the deaf. With her cochlear implant she will be able to use words to communicate. She will be able to learn and to succeed. A world will be open to her that never would have existed otherwise. Despite this, she will always be deaf. It is a part of her, like the color of her eyes. For this reason, we have recently chosen Total Communication. In Total Communication, deaf children use whatever communication method feels most comfortable — lip-reading, sign language, speaking, gestures, or a combination. It is our hope that she will be fluent in both signed and spoken English.
“Ooopen!” That is a fitting first word for Alia. Thanks to her cochlear implant, many new doors will open for her. The opportunities are boundless. She will be able to choose whether she wants to be a member of the Deaf Community, the hearing world, or both. She will be bilingual, bicultural. A citizen of both worlds, a prisoner of neither. It will be her decision, and hers alone, which doors to open.