Alternative facts or women’s empowerment? Swedish women’s claims about the health risks of copper IUD use
Summary, in English
The internet has radically transformed the way that people seek and share information and, as a consequence, their relationship to established epistemic authorities. It has been stated that ‘the contestation of expertise is perhaps nowhere more pronounced’ than in the field of health (Vuolanto et al., 2020: 508). Health-related information on the internet stems from a variety of actors and sometimes contradicts information provided by medical authorities. There is, hence, a widespread concern about misinformation about health and its potential consequences for individual and public health. In this contribution we intervene in scholarly discussions on knowledge claims about health in an era of ‘epistemic democracy’ (Lynch, 2017) enabled by digitalization. We do this through the case of a group of women who claim, contrary to established medical authorities, that using a copper IUD may lead to side effects caused by a systemic excess of copper. The women are organized through a Swedish language Facebook group currently gathering 9.300 members. Drawing on seven online group interviews with a total of 23 women recruited from the Facebook group and 23 written essays collected from members of the same group, we analyse the women’s ‘alternative’ knowledge claims in relation to three tensions that we identify in the discursive and institutional contexts in which these women’s epistemic negotiations are embedded.The first tension concerns the way that this alternative discourse may be related, on the one hand, to current trends of ‘alternative facts’ and conspiracy theories spreading through digital platforms, but, on the other hand, to the internet’s facilitation of subordinated groups’ information sharing and empowerment in the face of conventional epistemic authorities. Women’s organizing around health has indeed been pivotal given a long history of women’s health concerns and embodied experiences being marginalized or deprioritized in modern medicine. The second tension relates to these women’s ambiguous position in a neoliberal society which fosters an ideal of patients taking individual responsibility for their health, while having trouble coping with the ‘undisciplined patients’ (Keshet & Popper-Giveon, 2018) which such independence may foster. A third and final tension is identified between, on the one hand, the individualized responsibility nurtured among women embracing the alternative knowledge claims about the copper IUD and, on the other, the collective mode in which such individual responsibility is enabled and played out.