Glimpses of Eternity : Sampled Mormon Understandings of Disability, Genetic Testing, and Reproductive Choice in New Zealand
Otago, Dunedin, New Zealand
University of Otago
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.