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Series: Narratives of the disease

Narrativas de la enfermedad

Date: 2 december 2020 at 16:00 to 17:30. Wednesday.


Place: online


In the last few years, we have witnessed a growing cultural interest in the narratives of disease, and the emergence of autobiographical literature focused on the experience of the most diverse physical or mental ailments, and on personal experiences developed in care institutions such as hospitals, asylums and all kinds of medical practices. Attuned to this emergence, the ethnographic analysis of these issues has experienced a significant boost and has allowed, on the one hand, to stress different types of realities (political, social, economic, etc.) involved in the articulation of the experience of the disease and, on the other hand, to study clinical practice as a complex process of negotiation leading to give a certain to ailment. In this sense, it is not coincidence that one of the approaches of more interest within the field of the medical history is precisely the reconstruction of the experience of patients ‘from below’, that is to say, dispensing with the mediations exercised and the enunciations made by health professionals or from the "health sciences". Initially, this objective was followed through the analysis of more or less famous cases, but what has been called for lately is a greater attention to all kinds of individuals (and, very especially, to ‘non-normative subjectivities’) and a new place for their discourses within the framework of the so-called ‘profane knowledge’. With a group of recognised specialists from the fields of anthropology and the history of medicine and science, this series aims, on the one hand, to promote reflection on the possibilities (and limits) of the ethnographic approach to health, disease and medical practice and, on the other hand, to offer some particularly suggestive examples of work with individual narratives from various emblematic fields such us neurology, psychopathology and the history of psychiatry.



Wednesday 2nd December 2020, at 4 pm

Inma Hurtado García (Universidad CEU-Cardenal Herrera)

Entre profesionales y pacientes: lo que el relato etnográfico hilvana (Between professionals and patients: what the ethnographic story links to)


'In this presentation I intend to show the contributions of ethnographic research to the understanding of the socio-cultural logics underlying the processes of care for illness. Specifically, to emphasise its capacity to bring out a critical story from those aspects that are obviated by bio-medicine and which are involved in the interactions between professionals and patients. I will use my own research experience in different care facilities, particularly the hospital, to reflect on ethnography as a story of recovery and approach to the various realities –usually, in tension- around the body, health and disease which are put at stake in the care encounter. I will also consider how the unstable and interstitial position of research between professionals and patients gives rise to the epistemic privilege of deepening our knowledge of their relationship, of weaving together the different frameworks and meanings from which each one expresses themselves and of proposing more effective interventions in the field of health'.


Degree in Social and Cultural Anthropology (2001) and European Doctorate in Medical Anthropology (2010). In 2013, she received the Marqués de Lozoya First Prize for Cultural Research from the Ministry of Culture for her work Cartografía de una aspiración. Envejecimiento, salud y curas en la migración a la Costa Blanca (Mapping an Aspiration. Ageing, health and cures in migration to the Costa Blanca). She has carried out research stays at the Amsterdam School for Social Science Research (ASSR) (University of Amsterdam), Sheffield Institute for Studies on Ageing (SISA) (University of Sheffield) and the Department of Anthropology of the University of California at Berkeley. She currently works as an assistant professor in the Faculty of Humanities at the Universidad CEU-Cardenal Herrera (Elche Campus). Over the last decade, her initial lines of research have been extended to different fields of medical anthropology such as body practices and policies, health education, citizen participation in health and mental health, as well as different approaches such as feminist theory, STS (Science, Technology and Society) studies and Science, Technology and Gender (STG).


Wednesday 16 December 2020 at 4 pm

Itxaso Martín (Euskadi Irratia)

La escritura y el contenido etnográfico como un todo: un ejemplo de construcción de un texto etnográfico sobre la locura (Writing and ethnographic content as a whole: an example of the construction of an ethnographic text on madness)


The construction of the ethnographic text is a substantial part of the research itself; it is through the text (in its broadest sense) that the work done is communicated. This proposal considers the content of the research and its textual construction as a whole, aiming to produce a communicative effect that brings readers closer to the protagonists of ethnography. After working with more than 500 medical records and letters from people admitted from 1937 to 1950 to a psychiatric hospital in the Basque Country, a textual construction of ethnography is made that is outside the scientific-logical-rationalist language. Taking as a reference the form of the letters included in the records (written down to the last centimetre of paper), the ethnographic text will sometimes have the same presentation: pages written more in the margins than in the centre. In this way, it is possible to emphasise that we are talking about people situated on the margins of society. On the other hand, by using short sentences and ellipsis, a language is created that transmits us the silence, the gap, that these people are for society. Applying Richard Wagner's (1813-1883) concept of 'total work of art', we talk about 'total ethnographic work', an anthropological investigation that gives importance and cohesion to all parts of it, also the aesthetic part and the textual construction.


PhD in Anthropology (2015) with the thesis Escribiendo la locura, la submemoria y los silencios: mujeres vacío como espejo de la sociedad y la moral (Writing madness, sub-memory and silences: empty women as a mirror of society and morality). Master's degree in Feminist and Gender Studies (UPV, 2011), degree in Cultural and Social Anthropology (UPV-EHU, 2010) and degree in Audiovisual Communication (UPV-EHU, 2003). She has published the novel Ni, Vera (Elkar, 2012) based on the story of her great-grandmother, who was admitted to a psychiatric hospital in Guipúzcoa from 1935 to 1986. She currently works as a journalist for Euskadi Irratia (Basque Public Radio).


Wednesday 13 January 2021 at 16pm

Fernando Vidal (ICREA-Universitat Rovira i Virgili)

Narrativas del síndrome de cautiverio (Narratives of locked-in syndrome)


Locked-in syndrome (LIS) is a very low prevalence phenomenon whose main cause is a stroke in the brain stem or a neurodegenerative disease such as amyotrophic lateral sclerosis. Those affected become quadriplegic and cannot speak, but maintain body sensations, perception, consciousness and cognitive functions. The project Antropología y fenomenología del síndrome de cautiverio (Anthropology and Phenomenology of the locked-in syndrome, Universitat Rovira i Virgili) aims to learn about the experiences of people with LIS in order to deepen their understanding of the person-being, of life as a value and of the individual and contextual conditions of continuity or discontinuity of personal identity. One of its methods consists in the analysis of autobiographical narratives (published as books, articles, blogs, or communicated in interviews). Based on examples, this presentation will address the challenges, limitations and possibilities of 'disease narratives'.


Fernando Vidal studied psychology and history of science at Harvard University, Geneva and Paris, and at the École des Hautes Études en Sciences Sociales, Paris. Winner of a Guggenheim scholarship, he has been a Research Professor at ICREA (Institución Catalana de Investigación y Estudios Avanzados) since 2012, which he joined after more than a decade as a permanent senior researcher at the Max Planck Institute for the History of Science in Berlin. He is a specialist in the intellectual and cultural history of the human sciences from the Renaissance to the present day, and is particularly interested in the articulation of knowledge and values in the formation of ideas about the human being.


Wednesday 27 January 2021 at 16pm

Alexandra Bacopoulos-Viau (Weill Cornell Medical College/New York University)

Illness Narratives: Some Reflections from the History of Psychiatry 


In this presentation I will offer some reflections on the encounter between the historian and the archive, which are based on my work in the cultural history of psychiatry and the human sciences. I will do so in three sections. The first one focuses on the ever-problematic methodological and epistemological questions surrounding the uses of the patient’s voice. It presents some critical theoretical and conceptual issues that my colleague Aude Fauvel and I explored in a 2016 special issue of Medical History entitled 'Tales from the Asylum. Patient Narratives and the (De)construction of Psychiatry'. The second section offers a vignette from my upcoming first monograph, Scripting the Mind, that centres on the aporia: What to do when the subject’s voice is literally erased? By turning to the (nonexistent) patient records of Dr. Pierre Janet (1859-1947), a leading turn-of-the-20th-century French mind scientist, this part interrogates the issue of the destruction of archives and the historical reconstruction that ensues. The third and closing section highlights some broader historiographical and practical implications raised by the above questions.


Alexandra Bacopoulos-Viau is a visiting researcher at the Institute for the History of Psychiatry at the Weill Cornell Medical College in New York. Her doctoral dissertation, which she completed in Cambridge, was awarded the prize for the best dissertation 2014 by the History of Human Sciences Forum of the History of Science Society. She is currently converting this work into a book entitled 'Scripting the Mind: Technologies of Writing and Selfhood in Modern France'. Alexandra has taught at Cambridge, Harvard, McGill, and ÑU, and has published several articles on the history of the 'psy' disciplines.



Organized by:

Coordinadores: Enric Novella (Institut Interuniversitari López Piñero, Universitat de València) e Inmaculada Hurtado (Universidad CEU-Cardenal Herrera).