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‘I know that aside from my arms I’m normal’: negotiating the incoherencies of a ‘VACTERL identity’
- Author:
- KALFA Ora
- Journal article citation:
- Disability and Society, 27(1), 2012, pp.65-79.
- Publisher:
- Taylor and Francis
VACTERL Association, a medical diagnosis that represents a broad range of characteristics, affects the following body systems: vertebrae; anal; cardiovascular; trachea; esophageal; renal and radial; and limb. A person with three or more problems in any combination may be recognized as fitting in the VACTERL Association. Auditory, growth, sex, and reproductive characteristics are often present as well. Thus far, VACTERL has only been examined within the medical system, and, within that framework, it has become identified as an anomaly and ‘disability,’ leaving the embodied experiential realities of individuals who live with it unexplored. This paper reports on a qualitative study with eight self-identified women with VACTERL Association. All participants were from across the North American continent. The study provides an introduction to the experiences of these women and provides an exploration of the elements and processes of identity negotiation, with particular focus on the intersection between gender and ability. As well, the impact of a medical label as it affects identity formation is examined. Implications for future research are presented.