‘I know that aside from my arms I’m normal’: negotiating the incoherencies of a ‘VACTERL identity’

Abstract

VACTERL Association is a medical diagnosis that represents a broad range of characteristics affecting the following body systems: vertebrae; anal; cardiovascular; trachea; esophageal; renal and radial; and limb. 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. This paper 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.

Keywords:

• identity
• disability
• gender
• VACTERL/VATERS Association

Acknowledgements

This research is dedicated in loving memory to Chrissy who helped so many with VACTERL, and to The VATER Connection who creates change from the ground up. The author would like to thank every research participant for their trust and for giving themselves to this research project . The author gratefully acknowledges the academic guidance and support of Stephanie Baker Collins, Maurice Poon, Uzo Anucha and Naomi Kalfa.