Cultural Themes Across Generations: Exploring Changes in Lived Experiences of Six Deaf Individuals A DISSERTATION SUBMITTED TO THE FACULTY OF THE GRADUATE SCHOOL OF THE UNIVERSITY OF MINNESOTA BY Nancy McFarlin Diener IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF EDUCATION FRANK GULDBRANDSEN, Ph.D., Adviser December, 2010 @ Nancy McFarlin Diener, 2010 Abstract Historically, hearing people have held positions of power and influence in many areas of society affecting Deaf people, yet they often know little about the life experiences of Deaf people, or how Deaf people feel about decisions made on their behalf. Understanding the lived experiences of Deaf or hard of hearing people is important for developing effective educational models for teaching Deaf children and creating a more inclusive society. This qualitative study collected and examined life story narratives from six Deaf people, ages 18-77. The life story narratives provided examples of Deaf community values that have remained consistent, even as the day-to-day lives of Deaf people have changed dramatically over the last 60 years. Significant themes emerged, including education for Deaf children, American Sign Language, cultural awareness and acceptance, and the importance of listening to Deaf people. Recommendations for educational administrators, based on the research findings, are listed. i TABLE OF CONTENTS Introduction…………………………………………………………...... 1 Background of the Study…………………………………………... 2 Statement of the Problem………………………………………….. 4 Purpose of the Study………………………………………………. 5 Rationale…………………………………………………………… 5 Research Questions………………………………………………... 7 Significance of the Study………………………………………….. 7 Assumptions……………………………………………………….. 8 Limitations………………………………………………………… 9 Nature of the Study……………………………………………….. 10 Organization of the remainder of the Study………………………. 11 Definition of Terms……………………………………………….. 12 Literature Review……………………………………………………… 13 History……………………………………………………………... 13 Deaf Education Arrives……………………………………. 13 Beginnings of a Deaf Culture……………………………… 15 Visual Communication…………………………………….. 15 Language Acquisition……………………………………………… 16 American Sign Language………………………………………….. 18 Storytelling………………………………………………………… 19 Life Stories………………………………………………………… 21 Deaf Cultural Values……………………………………………… 21 Challenges to the Culture…………………………………………. 22 Oral vs. Manual……………………………………………………. 23 Total Communication……………………………………………... 24 Manually Coded English………………………………………….. 25 Speech Therapy…………………………………………………… 29 Mainstreaming……………………………………………………. 30 Teachers of the Deaf……………………………………………… 33 Interpreters………………………………………………………… 35 Medical Intervention………………………………………………. 37 Hearing Aids and Amplification Devices………………… 38 Cochlear Implants………………………………………… 38 Technology……………………………………………………….. 41 Problem Statement……………………………………………….. 42 Purpose of the Study……………………………………………... 42 Research Questions……………………………………………….. 42 Summary………………………………………………………….. 43 Methodology…………………………………………………………… 44 Methodology………………………………………………………. 44 Problem Statement………………………………………………… 46 Purpose of the Study………………………………………………. 46 Research Questions………………………………………………… 47 ii Participants………………………………………………………… 48 Brief Biographies of Participants………………………………….. 49 Data Collection Procedures………………………………………... 52 Data Analysis……………………………………………………… 53 Conclusion………………………………………………………… 54 Results………………………………………………………………… 56 Research Questions……………………………………………….. 56 Research Question 1……………………………………………… 57 Research Question 2……………………………………………… 64 “I’m Different Somehow…”……………………………... 64 Finding Others Like me…………………………………… 71 The Deaf School: A New Home and Family……………... 74 The Deaf School: A Panacea?............................................. 76 Speech Therapy…………………………………………… 77 Sign Language Interpreters……………………………….. 81 Deaf Schools as the Vault of Cultural Knowledge……….. 83 Cochlear Implants………………………………………… 85 Post-Secondary Experiences……………………………… 87 Communication With Family…………………………….. 93 Finding Our Way in the World of Work…………………. 99 Technology……………………………………………….. 106 Research Question 3……………………………………………… 109 The origin of the American Deaf Community…………… 109 Deaf Heroes………………………………………………. 110 Deaf Community Involvement…………………………… 113 Threats and Challenges to the Deaf Community…………. 117 Historical and Current Issues……………………………... 119 Oral Training or Sign Language?............................ 119 Signed English (MCE), Cued Speech, and ASL…. 121 Cochlear Implants………………………………… 123 Educational Choice for Deaf Children……………. 126 Technology………………………………………………… 133 The Future for Deaf People……………………………….. 135 Future of the Deaf Community……………………. 135 Hopes and Dreams for Deaf Children……………... 139 In a Perfect World…………………………………. 142 Summary…………………………………………… 144 Conclusions and Recommendations…………………………………… 146 Research Questions…………………………………………………146 Research Question 1……………………………………………….. 147 Research Question 2……………………………………………….. 148 Research Question 3……………………………………………….. 150 Conclusions and Contributions……………………………………. 152 Two Big Ideas……………………………………………………… 153 iii Recommendations…………………………………………………. 154 Summary…………………………………………………………… 155 References…………………………………………………………………. 157 Appendices Appendix A: Demographic Survey………………………………… 166 Appendix B: Demographic Survey Results………………………... 169 Appendix C: Interview 1……………………………………………170 Appendix D: Interview 2…………………………………………... 171 Appendix E: Interview 3…………………………………………... 172 Appendix F: Consent Form………………………………………... 173 Appendix G: Consent Form Signature Page………………………. 176 Appendix H: IRB Review Form…………………………………… 178 iv CHAPTER ONE Introduction The life experiences of Deaf people have been influenced by historical and societal events. These influences can be recognized in Deaf life stories. Deaf people have faced many challenges, some more overt than others, and all demonstrating a decidedly anti-cultural view of Deaf people. Threats to the culture almost always are grounded in a medical/pathological view of deafness (Lane, Hoffmeister & Bahan 1996; Branson & Miller, 2002; Parasnis, 2002). Until relatively recently, very little of the published research on Deaf people came from Deaf people themselves, in their own voices, and from their own perspectives (Van Cleve,1993). According to Lane (1999) “In America, there is no place for deaf people where decisions about deaf lives are being made” (p. 204). Sacks opens his book Seeing Voices with the statement “We are remarkably ignorant about deafness” (p.1). It is difficult for hearing people to easily understand the nature of Deaf Culture and the experiences and beliefs of Deaf people without first understanding the context in which Deaf Culture developed and the issues faced by Deaf people. For hearing people, the term deaf signifies something missing or lost, a deficit, a disability. Deaf, for those who are Deaf, means something entirely different. “Deaf refers to a member of a linguistic and cultural minority with distinctive mores, attitudes, and values and a distinctive physical constitution” (Lane, 2002). For the purposes of this study, Deaf Culture is defined as a common life experience that includes values, customs and norms, and most importantly, a language--American Sign Language. 1 Background of the Study Historically, the American Deaf Culture has been challenged in many ways by the actions and attitudes of the dominant culture. “It is not unreasonable to say that people who are deaf have been effectively colonized by the dominant culture which never consciously questions its capacity to hear.” (Stone, 2002, p. 172) Linguistic and cultural colonization can be perceived in the education system, where the dominant culture forces its language and values onto the minority culture (Ladd, 2007). Much of the documented history of Deaf people has been written by hearing people and focused on issues that have standing and importance in the hearing world (Lane 1999). These issues tend to fall under the broad category of pathology, defining the amount of hearing loss, the “handicap” of deafness, the communication and speech problems, and how to remedy these difficulties. Lane, Hoffmeister and Bahan identify two elements of the “hearing agenda.” The first is to mitigate a disability, and the second is to eradicate the DEAF- WORLD (1996, 2008). Titles of typical research on Deaf people often include negative descriptors such as problems, pathology, deficiencies, and delays. Lane studied 350 journal articles and books on psychology of the deaf and took note of every word or phrase used to describe characteristics of Deaf people. After combining like words and phrases, a list of over 60 descriptors was generated. All descriptors were negative, including opposing descriptors such as aggressive and submissive. “In general, Deaf people are characterized as socially isolated, intellectually weak, behaviorally impulsive, and emotionally immature” (Lane, 1999, p. 349). It could be argued there existed no genuine, documented cultural history of Deaf 2 people and the Deaf community until the recognition of American Sign Language (ASL) as a true and natural language in the mid-1960s (Jankowski, 1997; Armstrong & Karchmer 2009). In Stokoe’s groundbreaking ASL research, he applied universal linguistic principles to the grammar and structure of signed language and found ASL satisfied the principles of a true and natural language (Valli, Lucas & Mulrooney 2005; Armstrong & Karchmer 2009). Once this “discovery” was revealed, the nature of the group of people knitted