Abstract:
The aim of this small anthropological study was to work with two families with inherited deafness in order to understand their approach to decision-making about reproductive technologies in the context of their life experiences and their current situations. This study is part of a larger project investigating public and private decision-making about reproductive technologies in the context of a broad spectrum of views of genetic difference and disability. The methods included interviews and participant observations and email communications. One of the key researchers is a Deaf fluent signer, the other a Hearing beginning signer. They were assisted by a senior colleague who is a Hearing non-signer and by several sign-language interpreters and Deaf community advisors. Thematic analyses were undertaken using an inductive approach. The results presented here include a glimpse into the Deaf worlds of the two families and show the diversity of their experiences as children and young people. Relations with the Hearing society and with hearing people are discussed. We document struggles and successes with education and misgivings about the educational opportunities for the next generation. Identity issues and the motivating force of deafness come to the fore in the context of schooling. Bilingual education is highly valued by each family. Deafness for them is normal, not a disability, therefore genetic testing and the thought of genetic manipulation or, even worse, abortion because of deafness is repugnant to them. Communication barriers and the dominance of Hearing world assumptions have often made relationships with health professionals difficult. Families have developed means of managing and coping with these situations. No firm conclusions can be reached based on this study alone. However, it has demonstrated the importance of working towards an understanding of each particular situation, the complexity and diversity of challenges to which genetic diversity gives rise, and the ingenuity and persistence of the families.