Infertility, reproductive timing and 'cure' in families affected by Turner Syndrome

Abstract

This article discusses the influence of a chromosome condition affecting women's reproductive capacity, Turner Syndrome (TS), on affected women's social timing, examining the strategic decisions that are made within families in relation to reproduction, to navigate these disruptions. Based on photo elicitation interviews with 19 women with TS and 11 mothers of girls with TS in the UK, it presents findings from an under-researched topic, TS and reproductive choices. In a social context where motherhood is not only desirable, but expected (Suppes, 2020), the social imaginary of infertility anticipates a future of unhappiness and rejection, an undesirable condition that should be avoided. Accordingly, mothers of girls with TS often expect that their daughter will want to have children. Infertility diagnosed in childhood has a distinctive impact on reproductive timing, as future options may be anticipated for years. This article uses the concept of 'crip time' (Kafer, 2013) to explore how women with TS and mothers of girls with TS experience temporal misfitting based on a childhood diagnosis of infertility, and manage, resist and re-frame this to minimise stigma. The 'curative imaginary' (Kafer, 2013), a social norm where disabled people are expected to desire a cure for their condition, is used as an analogy for infertility, describing how mothers of girls with TS respond to social pressure to plan for their daughter's reproductive future. These findings may be useful both for families navigating childhood infertility and practitioners who support them. This article demonstrates the cross-disciplinary potential of applying disability studies concepts to the context of infertility and chronic illness, where concepts shed new light on the dimensions of timing and anticipation in this context, improving our understanding of the lived experience of women with TS, and how they view and use reproductive technologies.

Keywords: Chromosome disorder; Futurity; Imaginaries; Infertility; Reproductive timing; Turner Syndrome.