Cochlear Implants in Children: Ethics and Choices

Introduction

1 Introduction The vast majority of parents of deaf children are hearing people who generally have little, if any, contact with deaf people and know next to nothing about deafness before discovering that their child is deaf.Whether they learn of their child’s deafness on their own, or whether their child’s deafness is diagnosed by an audiologist or pediatrician, many parents are not only shocked and devastated by the news, but they also have few clues about what course of action to take subsequent to this discovery. Many feel the need to “do something,” but few have any inkling about what to do when they need to start making decisions about how to socialize and educate their child.This book focuses on some of the issues and questions parents confront when they consider obtaining a cochlear implant for their deaf child. Rather than simply describe the actions these parents took, we want to draw on some recent social and behavioral science research to interpret why many hearing parents of deaf children continue to find implants attractive. Specifically, we want to know the answers to the following questions:How do parents perceive their situations? What are some of the assumptions they bring to their decision-making? What are some of the behavioral patterns that follow from these decisions? What are some of the social implications and consequences of these actions? (Adapted from Anderson , 1999, p. 11; italics added.) One way to help explain and put into perspective the actions that the parents have taken is to look at some of the assumptions that these parents brought with them to the situation in which they found themselves.That is, how did they (and how do they continue to) define their situation? How one interprets or perceives a situation or circumstance depends in large measure on the assumptions one brings to that situation. Furthermore, the actions one takes depend on one’s assumptions about what he or she thinks should be done. And, of course, these actions have intended and unintended consequences or implications.The chain linking situations, assumptions, actions, and consequences is an important one and will be referred to from time to time in this book to organize and help explain our data. In addition to these questions, we have incorporated some insights from social scientists who have suggested that the traditional anthropological definition of the term “culture” needs to be reconceptualized in a way that can help us better explain why people are more likely to adopt one course of action rather than another.Traditionally , culture has been defined quite broadly as the“way of life” of a people or society that includes norms, values, mores, language, artifacts, and other characteristics.There are few attributes or characteristics of a group or category of people that would appear to exist outside of this global view of culture.We often talk about“deaf culture,” for example, and this would include such characteristics as the use of American Sign Language, residential schools for deaf students, and norms governing appropriate interaction between deaf and hearing, and deaf and deaf people.People also discuss“hearing culture”as if that, too, had distinguishing values and norms that can be clearly identified, and are somewhat different from those found in deaf culture. One difficulty with such interpretations of the term culture is that, by encompassing such a broad range of activities and characteristics , they do not provide us with much help when it comes to using the concept analytically to explain individual actions.There needs to be a better way to link the characteristics of a group or society, which undoubtedly exist and are undoubtedly important, to individual actions. Instead of a global view of culture that encompasses a society’s entire way of life, sociologist Ann Swidler (1986) suggests that a more useful way to conceptualize culture is to see it as a “tool kit,” or a collection of resources, from which people are able to select different pieces to construct various “strategies of action” in different situations. Rather than conceptualizing culture as providing us with the “ends” or values that we have learned via the socialization process and that we more or less take for granted, this view of culture focuses more on the “means” by which people pursue various courses of action as they attempt to solve problems of everyday life. One of the advantages of focusing primarily on means rather than 2 COCHLEAR IMPLANTS IN CHILDREN [3.136.18.48] Project...