"I'm a friend, an aunt, an adoptive mother, a writer": Turner Syndrome and the Contemporary American Woman

Abstract

Turner Syndrome (karyotype 45,X0) is a genetic condition that impacts approximately one in every 2,000 to 2,500 live female births. There are various physical characteristics associated with the condition, including heart and kidney defects, short stature, delayed or incomplete pubertal development, and infertility. Although there exist numerous scientific and medical studies on Turner Syndrome, very few researchers have investigated the social and cultural dimensions of the condition. This thesis seeks to bring new, anthropological approaches to a study of the experiences of women living with Turner Syndrome. In the course of ten weeks working for the non-profit Turner Syndrome Foundation, I conducted 33 interviews with women and girls with Turner Syndrome and their family members. Through vignettes from these interviews, my interlocutors emerge as multifaceted individuals who engage in various forms of knowledge, community, and advocacy as they construct gendered illness narratives, engage in normative and non-normative events in the traditional female life course, and advocate for themselves and others. Together, these stories seek to enrich understandings of the experience of the contemporary woman while advocating for new approaches to research on Turner Syndrome and similar medical, disability, and gender(ed) categories, particularly through anthropological means.