Surgical Consent: Bioethics and Cochlear Implantation

8 A STUDY OF NORWEGIAN DEAF AND HARD OF HEARING CHILDREN: EQUALITY IN COMMUNICATION INSIDE AND OUTSIDE FAMILY LIFE

151 8 A STUDY OF NORWEGIAN DEAF AND HARD OF HEARING CHILDREN: EQUALITY IN COMMUNICATION INSIDE AND OUTSIDE FAMILY LIFE Hilde Haualand and Inger Lise Skog Hansen In the past, the only option for Norwegian parents was to send their deaf or hard of hearing child to a school for deaf students, and the school made the decision with respect to the language (or languages) of instruction. Hearing aids were an option only for children with some residual hearing, and parents were rarely offered the opportunity to learn sign language. With the introduction of cochlear implantation, the need to make tough choices on behalf of one’s child is further heightened. In addition, parents face still more stress and uncertainty as they encounter a field in which specialists do not speak with consensus about whether implants are necessary or how children who have been implanted should be followed up on after surgery. This chapter draws on interviews with deaf and hard of hearing youth and their parents who belong to the first generation of deaf children in Norway whose parents learned sign language on an extensive basis. When Deaf or hard of hearing children are born, their parents are now faced with numerous options. The alternatives available to them with respect to technology , language, and the education of their children have grown steadily. Knowledge of and insight into the structure and benefits of sign languages have increased considerably. That knowledge parallels the explosion in development of technical hearing devices such as hearing aids and cochlear implants. Added to this knowledge and technology is the increased emphasis on the “normalization ” of the lives of disabled people and those of Deaf and hard of hearing people through integration and inclusion in the institutions and organizations of the wider society. Could those who struggle with the agony of choices today benefit from the experiences of a generation of Deaf and hard of hearing children who are now on the threshold of adulthood? The parents of the Deaf and hard of hearing youth who were interviewed in the research project “Children of the Normalizing Ideology,” (Haualand, Grønningsæter, and Skog Hansen 2003) reported in this chapter, faced a range of choices with respect to language, family communication, and school placement that is similar to what parents face today. The key difference was that, for parents of those in the research project, cochlear implantation was not as widespread when their children were born in the mid-1980s. One of the youths we interviewed, however, did receive a cochlear implant in childhood. Because of an accident, the implant was removed when she was eleven years old. Some of the youth interviewed in the project are profoundly Deaf, some function in several situations as a hard of hearing person, whereas others have only mild hearing loss. Their views of family life and, in particular, communication at home 152 HILDE HAUALAND AND INGER LISE SKOG HANSEN vary greatly and reflect a variety of decisions made and strategies used for including the child in the family or for coping with a child’s hearing loss. In this chapter, we focus on family involvement, communication, and relationships through the eyes of these young people. They belong to the first generation of deaf children in Norway whose parents have been encouraged to learn sign language on an extensive basis. The national program for teaching sign language to parents of deaf children was fully launched after the informants in this project were in their early teens. Their parents, nevertheless, had been offered courses in sign language and would have been strongly encouraged to learn sign language in classes offered by the local Deaf club or at the school for the Deaf their child would later attend. The young people’s experiences of family life, therefore, may be quite different from the experiences of family relationships of earlier generations of Deaf people. We show how inclusion and communication strategies in the families appears to have had significant consequences for the way these youth position themselves in the world on entering adulthood. THE PROJECT: METHODS AND RESULTS The project “Children of the Normalizing Ideology” (Haualand, Grønningsæter, and Skog Hansen 2003) provides an initial look at particular aspects of the living conditions of Norwegian Deaf and hard of hearing people ages sixteen to twenty years. The study and the methods were exploratory because there was little previous knowledge or data on this group’s living conditions and quality of life. A questionnaire...