Raylene Paludneviciene
and Irene W. Leigh, Editors

Part One: The Deaf Community and Cochlear Implants

My Child Can Have More Choices:
Reflections of Deaf Mothers on Cochlear Implants for Their Children
Julie Mitchiner and Marilyn Sass-Lehrer

Deaf children have more opportunities in the 21st century than ever before. Many of these opportunities are accompanied by a host of choices thrust upon parents/caregivers in the first few months of their child’s life. Although the literature focuses almost exclusively on the decisions and opportunities that hearing families face, few researchers have investigated deaf families’ experiences (Meadow-Orlans, Mertens, & Sass-Lehrer, 2003; Meadow-Orlans, Spencer, & Koester, 2004). The proliferation of cochlear implants has added a level of complexity to the decisions confronting both hearing and deaf families. The issues, concerns, and, ultimately, decisions these families make may be different. This chapter describes the insights of three deaf families who chose cochlear implants for their children and their views on language, literacy, and Deaf culture.

Background

Although the strong negative reaction to cochlear implantation within the Deaf community in the early 1990s has lessened, there continues to be considerable controversy about the potential harmful versus beneficial consequences of this technology for young children (Lane, 2005; Marschark, 2007; Wever, 2002). It is still uncommon for culturally Deaf parents to elect to have their children implanted. Wever (2002) suggested that parental decisions regarding cochlear implantation may be influenced by their beliefs about what it means to be deaf. That is, those who perceive that being deaf is a “disability” are more apt to consider technologies that will remediate what they consider a deficit. Skepticism about the effectiveness of cochlear implants led Julie, the first author of this chapter, to take a closer look at her own feelings about cochlear implants and her identity as a culturally Deaf person. She wondered why deaf parents would elect this procedure for their children.

My attitudes and perspectives about young deaf children getting cochlear implants have gradually evolved since the first time I heard about deaf people getting cochlear implants. Growing up with deaf parents and attending deaf schools, I have a strong sense of pride of being deaf and being part of the Deaf community. I do not look at myself as disabled. I often say if I were given a choice to hear or stay deaf, I’d choose to stay deaf. It is who I am. My family, my friends, and my community have taught me that being deaf is part of our culture and is a way of life. Many deaf people have succeeded in life without having the ability to hear. They’ve become lawyers, doctors, scientists, and teachers. It has nothing to do with the ability to hear. It has to do with many other factors such as the person’s attitude, values, beliefs, and motivation.

I used to oppose strongly the idea of deaf people getting cochlear implants. It indicates the need to “fix” the problem. I felt betrayed and angry that doctors implanted deaf children. What does this say about me? It tells me that there is something wrong with me. Being deaf is natural to me, and putting “machines” inside children’s heads frightened me. I believed that it would destroy deaf children’s sense of pride and they’d end up viewing themselves as disabled. I had heard stories that many deaf children ended up throwing away their cochlear implants when they got older. One of my friends had her cochlear implant surgically removed. She was ashamed to have a cochlear implant. She was stuck with a huge scar on her head. In the past, mostly hearing parents chose to have their deaf children implanted and it was almost nonexistent in deaf children with deaf parents. Most deaf parents shared the same beliefs as me. It seemed to me that the deaf community did not want to interact with families who chose to have their deaf children implanted. Many of us criticized these parents and blamed doctors for “brainwashing” the parents. We believed that doctors didn’t share all of the options with the families, and they often offered only one solution, which was to get a cochlear implant. It was frequently recommended by health care providers that deaf children with cochlear implants attend oral programs rather than schools for deaf children using sign language so that these implanted deaf children would have maximum exposure to spoken language.