Uncertainties, imagined futures and regimes of temporality among women with Turner syndrome
Nicoletta Diasio & Eva Laiacona (University of Strasbourg, France)
Panel: Imagined and abandoned futures
Abstract: Syndromes take very different forms between individuals, their manifestations may arise unexpectedly, and their evolution is not easy to predict. This uncertainty is amplified in rare diseases. Based on anthropological research on growing up and ageing with a Turner syndrome in France, our paper analyses the connection between uncertainty, imagined futures and temporality in the narratives of girls and women aged 9 to 65. Uncertainty constitutes a condition where anticipation is hard or impossible or where social supports cannot play their role of prefiguration or support of anticipatory actions (Dousset 2018).We first analyse a type of uncertainty that occurs in the experience of an opaque body whose manifestations are difficult to read or to attribute with certainty to the illness. This uncertainty is amplified or minimised depending on how, in the past, the diagnosis has been made or the presence of the syndrome has been communicated. We further explore the “horizons of expectation” (Koselleck, 1990), mainly the prefiguration of bio-social passages (puberty, motherhood, aging). Uncertainty here gives rise to both concern about the future and bioreflexivity (Memmi 2003) on the entanglement of life stages, age position and the evolution of syndrome. This individual horizon is embedded in the going forward succession of generations disturbed by the sterility or the fear of heredity. We then differentiate the individual feeling of uncertainty from a situation of uncertainty, which is social, and examine the assemblage of human and non-human resources (Deleuze et Parnet 1996) in women’s production of certainties and government of their life. Finally, the paper questions the presence of a “regime of temporality” (Dubar 2004) which would be specific to rare diseases.