Together with Teun Zuiderent-Jerak I have started a research project on Trans* Health Guides as Doing Human Rights: Activism, Evidence, and Standardizing from the Zero Point. Our starting point was the Ley de Identidad de Género that had been unanimously passed by the Argentinian senate in 2012. This law defines gender identity as “the inner and individual gender experience as each person feels it.” Citizens are free to choose their gender and alter their official documents accordingly without medical, administrative, or legal gatekeeping. This law aims at reducing human rights violations against the Argentinian trans* community that faces an average life-expectancy of 37 years. Treatment to meet the gender experience through bodily modifications – covered by the Plan Médico Obligatorio, the national health plan – no longer aims at a transition to ‘the other sex’, but can result in a wider variety of bodies. Developing a health guide to standardize such care raises the question how to translate clinical evidence and other knowledge that is replete with biological binaries into a human rights-oriented non-binary understanding. We study ethnographically the development and use of this health guide as a standard for trans* human rights and show how such guides need to radically rethink evidence, including reclassifying ‘side-effects’ as ‘effects’. Our findings so far show that, where ‘the Zero Point’ between binaries for Leigh Star was important for ‘holding the tension’ individually, that seems too much to ask of a community under threat of huge oppression – including murder. The Argentinian trans* health guide can however, by extension of Star’s work, be seen as an attempt at ‘standardizing from the zero point’, making the work of holding the tension a collective, generative project.
Another ongoing research project revolves around questions on how care affects and is affected by the scientific practices and the imaginaries of (techno)science in medicine. I am ethnographically studying how biomedical knowledge and evidence gets produced and reproduced in research and diagnostics practices on prostate cancer and which implications/consequences this has on our practice and understanding of care. The research is part of a larger Swedish Research Council Distinguished Young Researcher Grant funded project entitled ‘Constant Torment. Discursive Contours of the Aging Prostate.’ The main investigator of that project is Senior Lecturer Ericka Johnson. My colleagues on this project are looking at the cultural and historical constructions of the prostate; the medical discourses, which enact the prostate as a discrete anatomical object; and on how the prostate is known and invoked in its absence, after surgical removal.
On Generative Accountability
In this book project I challenge the taken for grantedness of our understanding of accountability. My ethnographic research on the development of quality and safety devices such as performance indicators, critical incidence reporting and guidelines in healthcare and how these relate to notions of ‘good care,’ instantiate that the prevailing arguments and stories on accountability in healthcare practices are not able to acknowledge the efforts of healthcare professionals to provide accountable care. I show that accountability and care are both highly circumstantial, emerging and relational notions, and that it is not clear-cut who or what cares or accounts for what, whom, where, and how. Taking this on-the-ground finding theoretically seriously I suggest the notion of generative accountability instead. I show how paying due attention to the generative interweaving of accounting and caring, that is, to the narrative work of care professionals to creatively reconnect care experiences, observations, records and relations generates accountability with care.
Last updated: Thu Oct 13 05:57:43 CEST 2016