Beyond mystery babies : undiagnosis in a diagnostic age
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This dissertation analyzes shifting understandings and lived experiences of undiagnosed disabilities, probing contemporary notions of bodily and intellectual difference. Thanks to new biomedical technologies and diagnostic frameworks, diagnoses are now possible for many people who would have received an ambiguous label of “multiple disabilities” in the past. This gives new forms of hope for diagnostic knowledge, while calling into question the social and practical significance of extremely rare diagnoses about which little is known. This study asks what it means to be – and often to remain – undiagnosed in the contemporary U.S., and how this shapes broader beliefs, meanings, and practices surrounding disability. In a time of rising disability prevalence, complete with increased public awareness, shifting modes of clinical versus genetic identification of differences, and new forms of representation, what does it mean to remain undiagnosed? What might reside in these shadows? This analysis pays particular attention to family experiences, belonging, and the affective dimensions of disability in the everyday, and draws on anthropology, disability studies, and science and technology studies. Ultimately, this dissertation argues for a conceptual shift in approaching undiagnosis, calling for renewed attention to the complex social worlds of these individuals and their families as an emergent disability community.