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Journal of Genetic Counseling

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01.10.2007 | Professional Issues

Stigmatization, Culture and Counseling A Commentary on Growing Up and Living with NF1: a UK–Bangladeshi Case Study—by Santi Rozario

verfasst von: Clara L. Gaff, Angus Clarke

Erschienen in: Journal of Genetic Counseling | Ausgabe 5/2007

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Abstract

Rozario’s presentation of the cultural manifestations of stigma experienced by a British Bangladeshi woman with Neurofibromatosis 1 (NF1) is unusual in its detail of one woman’s account of others’ interactions with her and the impact on her life. It raises issues that are readily recognisable to genetic counselors and are familiar themes in the literature on the psychology of appearance. We draw on the genetics literature and on a body of expertise in research on the psychology of visible difference to consider the role of the genetic counselor in response to expressions of stigmatization or poor self-esteem by those with a visible difference caused by a genetic condition.

Rumsey and Harcourt (unpublished) refer to debate about the most appropriate terminology, pointing out that terms such as deformity, disfigurement, defect or abnormality have a negative focus. They suggest the less negatively framed language of visible difference and we follow their advice in this article. This is usually to describe visible difference in the absence of disability.

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Titel: Stigmatization, Culture and Counseling A Commentary on Growing Up and Living with NF1: a UK–Bangladeshi Case Study—by Santi Rozario
verfasst von: Clara L. Gaff
Angus Clarke
Publikationsdatum: 01.10.2007
Verlag: Springer US
Erschienen in: Journal of Genetic Counseling / Ausgabe 5/2007
Print ISSN: 1059-7700
Elektronische ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-007-9098-z

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