Our changing understanding of the position of "the patient" seems to posit a direct connection between intimately private affairs and the public sphere. But what is the nature of this linkage? What are its mechanisms? And how is it mediated?

Today, patients are no longer merely the object of medical endeavors. Patient engagement has arguably become a crucial component of medical knowledge production and health governance, rooted in previously existing forms of critical social engagement and competing with established gold standards of knowing, such as scientific causation (Epstein 2008). The growing empowerment of this group of actors into powerful stakeholders is evident. Yet simply expanding the concept of the patient to cover their role as users and consumers in the liberal market economy also falls short: it fails to account for the particularly personal mix of stymied agency and high vulnerability that is characteristic of campaigners and activists on medical issues.

Illustrative examples and case studies can be seen in mental health and environmental toxins research, and especially in evaluations of the side-effects of pharmaceuticals, which have spurred activist engagement across the “Global South” from Latin America through Central Africa, since the 1960s. Public awareness of infant disability due to maternal intake of misoprostol as an (illegal) abortifacient in Brazil only recently connected actors in “First World” and “Third World” countries around concerns about the high stakes for women and families, as well as the resulting challenges for democracy and civil society. 

In this seminar, we will discuss the role of oral history and patient experience in a historical reconstruction of drug disasters, as well as a potential framework to examine the origins, development, and consequences of patient engagement with antenatal drug use, iatrogenic disability, and reproductive health from the 1960s up to the present. In the second part, we will consider the interaction of personal testimony and the public sphere though a reassessment of the contribution of documentary film and reportage to the Duogynon campaign, a transnational group which formed around people who self-identify as having experienced teratogenic risks of hormone pregnancy tests.