Normalising What? About a GMO Body and Shan's Life

This paper questions the troubled links between norms, normality, and normalisation in the case of Shan, a young woman affected by Angelman syndrome and severely genetically disabled (absence of speech, disability, behavioural and sleep disorders). Firstly, it explains Shan’s life, regulated by a classical approach to the normalisation of life (Nirje, 1969) and ethically guided by theories of care (Gilligan, 1982; Tronto, 1993; Kittay, 2011), leading to a conception of autonomy in high dependence. Secondly, it unpacks the controversy that occurred with the arrival of a medication that might “cure” Angelman’s syndrome. Beyond analytical descriptions, the paper attempts to open the black box of Shan’s body’s materialities in order to show how several regulatory fictions, such as genetics and personalised care, are intertwined and correlated to different normative processes.