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Bridging the Gap: A Disability Services Perspective on Transition

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  • Anthropology
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Book, Video, and Film Reviews Disability Studies Quarterly Fall 2000, Volume 20 No. 4 Copyright 2000 Ablon, Joan. Living with Genetic Disorder: The Impact of Neurofibromatosis 1. Westport, CT: Auburn House, 1999, 215 pages, $59.95 hardcover. Reviewed by Gail Landsman, Anthropology Department, University at Albany, State University of New York. In Living with Genetic Disorder, medical anthropologist Joan Ablon provides a descriptive study of the experience of living with neurofibromatosis 1 (NF1), a condition once mislabeled, and still often associated in the minds of both the public and those with the condition, as the "Elephant Man's" disease. Indeed, the misdiagnosis of NF1 as the Elephant Man's disease is one of many factors Ablon presents as influencing the impact of NF1. Much recent social science and bioethical literature on genetic disorders has addressed issues of prenatal screening. Ablon focuses, instead, on the experiences and coping patterns of 54 adults already diagnosed with, and adapting to the stigma of, a specific disorder. While somewhat short on theory, the book is nevertheless rich with the voices of those living with NF1. Ablon categorizes the narratives of interviewees around specific themes, including psychosocial issues, diagnosis, school years, employment, marriage and childbearing, gender, etc., but otherwise lets the voices speak for themselves. This is a weakness of the book for those who might wish for more in-depth cultural or political analysis of genetics, disability, and the body, for instance, but is a strength for those who would wish to gain insight into the diversity of the experience of living with a genetic disorder. We learn that some affected persons are happily married to supportive spouses whose love is constant, while others have lived lonely, despairing, withdrawn lives or have married, with dismal results, the first person who came along for fear of later rejection. Some persons with N

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