Glimpses of Eternity Sampled Mormon Understandings of Disability, Genetic Testing, and Reproductive Choice in New Zealand Kristin Clift A thesis submitted for the degree of Master of Arts (Anthropology) at the University of Otago Dunedin, New Zealand August 2012 ii Abstract This research explores the narratives of seventeen members of the Church of Jesus Christ of Latter-day Saints (LDS) in Southern New Zealand as they explain the meaning of disability and prenatal genetic testing, and its ethical and spiritual significance within their lives. Qualitative interviews were conducted with participants who were careworkers, parents of children with disabilities, and people with disabilities. This thesis analyses these narratives of life with the experience of one or several impairments, and the LDS doctrine of the spirit’s journey explained against Frank’s (1995) outline of illness and disability narratives. The narratives related by the participants reveal a spiritual model of disability, which is then compared to Beatson’s (2004) models of disability. The faith-based approach to viewing these issues, which the LDS participants describe, reveals a unique disability cosmology. For example, most participants believed that a spirit is autonomous and chooses in the pre-mortal existence to live out life with a disability. Additionally, LDS doctrine teaches that in the resurrection, all bodies will be made whole. Thus, disability is only a temporary condition in the eternal scheme, and this eternal timeframe through which the participants viewed disability is a strong point of contrast with most contemporary models of disability. Furthermore, many participants rejected prenatal genetic testing in their own family life because of their spiritual understanding of disability. However, when speaking to the wider social and regulatory environment surrounding genetic testing, participants expressed a range of ideals displaying varying degrees of opinions from extremely averse to hesitantly supportive of people’s rights to engage in prenatal genetic testing. iii Acknowledgments First, if it were not for Dr Charles Nuckolls, I probably would not be where I am today. I would like to thank him for introducing me to Dr Ruth Fitzgerald and allowing me to follow him to Otago to conduct research with them. I am also deeply grateful for his encouragement and belief in me. I would like to thank Karma Chesnut for being a part of the journey and for her excellent organizing skills. I am immensely privileged to have met Rosalie Richter, Nazanin Malekiamin, and Emma McGuirk and am grateful for their friendship and emotional support. Thank you also to Ian, Fiona, and Melicen Barber for being so wonderful to me and making me feel like part of their family here. Special thanks to Molly George for her friendship, advice, and for her thesis, which helped to inspire me. I am indebted to my sister Kerry Spencer for always being an example to me and also for her input. I am especially appreciative for my mom and for her editing comments and my dad for his research input. I am thankful for their support and belief in me. Thank you also to the Department of Anthropology and Archaeology administration and especially to Heather Sadler. I sincerely and gratefully acknowledge the participants for openly sharing their time, beliefs, and stories with me. I would like to thank participants for being so hospitable toward me and being willing to speak with me about their lives. I would like to thank Associate Professor Mike Legge for being willing to read a draft and provide valuable feedback. I’m grateful to Martine Darrou for her hospitality (and for her delicious cooking). Most importantly, I wish to extend my sincere gratitude to my supervisor, Dr Ruth Fitzgerald, for believing in me, for supporting me, for putting up with me, and for being awesome in every way. This research project has been supported, in part, by the Marsden Fund Council from Government funding, administered by the Royal Society of New Zealand. iv Table of Contents Title Page ............................................................................................................................... i Abstract .................................................................................................................................. ii Acknowledgements ......................................................................................................... iii Table of Contents ............................................................................................................ iv List of Figures ................................................................................................................... vi List of Abbreviations .................................................................................................... vii I. Introduction .................................................................................................................. 1 Design and Methods.................................................................................................. 2 Narratives ..................................................................................................................... 8 Some Notes on Terminology .................................................................................. 9 Background on Prenatal Diagnostic Testing in New Zealand...................... 11 Structure ..................................................................................................................... 13 II. Disability Models, Spirituality, and Studies of Choices in Genetics ............................................................................................................................... 14 Anthropology and Disability Studies .................................................................. 14 Models of Disability .............................................................................................. 17 Spirituality and Choices in Genetics .................................................................. 19 III. Interlude: The Spirit Journey and the Quest Narrative ............. 27 The Pre-existence Quest......................................................................................... 28 IV. Being Disabled and Mormon in New Zealand ................................... 31 Mormon Rites of Passage ...................................................................................... 33 Baptism and the Priesthood ...................................................................... 34 Missions .......................................................................................................... 35 Marriage and Family .................................................................................. 35 Disability and the LDS Church ............................................................................ 42 V. Interlude: Life on Earth and the Chaos Narrative ........................... 49 VI. What is Disability? ............................................................................................. 54 v What Does Disability Mean? ............................................................................... 58 The Victim ...................................................................................................... 58 The Hero ........................................................................................................ 60 Special Spirits ............................................................................................... 61 …Or Not ........................................................................................................ 62 Is Having a Child With a Disability a Blessing? ................................ 64 VII. Opinions on Genetic Testing ....................................................................... 67 Genetic Testing: Playing God or Gift from God ............................................. 67 Prenatal Testing ........................................................................................................ 69 When Genetic Testing Leads to Termination ................................................... 72 Choosing Not to Have More Children................................................................ 76 Genetic Testing and the Spirit Journey .............................................................. 80 VIII. Interlude: Restitution Narratives in the Resurrection ............. 82 IX. Testimony .................................................................................................................. 85 X. Conclusion .................................................................................................................. 88 Participant Models of Disability .......................................................................... 89 Participant Perceptions of Prenatal Genetic Testing ....................................... 92 The Spirit Journey ................................................................................................... 94 Bibliography ...................................................................................................................... 96 Appendix: Glossary ...................................................................................................... 109 vi List of Figures Figure One: Prenatal Diagnostic Testing .............................................................................. 110 vii List of Abbreviations ADD Attention Deficit Disorder ADHD Attention Deficit Hyperactivity