"A special way of life"? Grooming girls with Turner Syndrome for womanhood
(Polish Academy of Sciences)
Paper short abstract:
Drawing from ongoing ethnographic research on patients with Turner Syndrome, their families, and physicians in Poland, this paper examines the notion of leading a "good" life in cases of women with TS, for whom becoming a mother is socially expected, but usually beyond their biological reach.
Paper long abstract:
Turner Syndrome (TS) is a rare disease (1: 2500 live female births) that nonetheless is the most common sex chromosome disorder in women. It is characterized by short stature, ovarian failure, and heightened risk for a number of health issues. In order to induce pubertal development and manage ovarian failure, girls with TS are put on estrogen replacement therapy for the rest of their lives. Drawing from ongoing ethnographic research on patients with TS, their families, and physicians in Poland, this paper examines the notion of leading a "good" life in cases of women with TS, for whom becoming a mother is socially expected, but usually beyond their biological reach. I thus address ways, often following a trajectory in which parents act on their expectations and aspirations in regard to their daughters with TS and their social role as women. Following the moment of diagnosis, they often want their daughters to become like other "normal" women and struggle with the looming issue of their daughters' infertility. On the other hand, parents often encourage their daughters with TS to lead a "good" life by excelling at school, university, and workplace. This may also include exercising care practices (as a nurse, kindergarten teacher, etc.) that would allow their daughters to embrace their female roles in a socially acceptable way.
Virtuous (im)mobilities: the good life and its discrepancies