Rare Diseases, Global Health, and Social Sciences: Counterbalancing Biomedical Reductionism
Workshop
Workshop at the Brocher Foundation, Hermance, Switzerland
The last two decades have witnessed the growing importance of the „Rare Disease” (RD) category in the context of national health policies and Global Health. Lacking a universal definition, RDs are defined as conditions that affect no
more than 1 in 2000 people in the EU and Australia; they affect fewer than 200,000 and 50,000 in the US and Japan respectively. It is estimated that some 30 million people in the EU and 263–446 million globally live with one of the over
6000 described RDs. In a 2021 resolution, the United Nations presented the complex nature of the challenges people living with a D and their families face as being intrinsically linked to both human rights and to the Sustainable
Development Goals. The 2021 report issued by the global alliance Rare Disease International identified ten common challenges and needs that impact diagnosis, care, and treatment of the RD population globally. A significant proportion
of the listed challenges and needs lies beyond the realm of biomedicine and life sciences.
The workshop Rare Diseases, Global Health, and Social Sciences: Counterbalancing Biomedical Reductionism aims to bring together, enhance and further develop social science and medical humanities approaches to the globalizing RD field by addressing these challenges and concerns that include social acceptance, equality, inclusion, political recognition, empowerment, and geographical and cultural considerations. In particular, the workshop proposes to address three thematic areas that have a significant and long-term impact on both the individual lives of people with a RD as well as on society, health policies, economies, and politics on national and global levels. These include (a) vulnerabilities of people with RDs, (2) the patient transition to adulthood and aging, and (3) the judicialization of health within the field of RDs. The workshop will also critically engage D initiatives that originate in and are promoted by the Western world, much like Global Health initiatives, which have recently received ample criticism for being driven by biomedical reductionism. We invite contributions from scholars in anthropology, sociology, the medical humanities, bioethics, law, and related disciplines as well as patient organization representatives that address the social, political, and economic consequences of biomedical reductionism in the field of RDs, including the above-mentioned topics.
The workshop will gather an interdisciplinary group of scholars and experts who are involved in research, publication, and advocacy in RDs and Global Health. Confirmed speakers include Waleska Aureliano (Rio de Janeiro State University, Brasil), Giorgio Brocco (University of Vienna, Austria), Nancy J. Burke (UC Merced, USA), Sangeeta Chattoo (University of York, UK), Pauline McCormack (Newcastle University, UK), and Samuel Agyei Wiafe (Rare Disease Ghana Initiative).
The workshop is planned as an in-person event. There is no workshop fee, however, the costs of travel and
accommodations cannot be covered by the organizers.
To apply, please send an abstract (300 words max.) and a short bio to Malgorzata Rajtar mrajtar@ifispan.edu.pl and
Eva-Maria Knoll eva-maria.knoll@oeaw.ac.atby September 30, 2022.
Cholera in the Indian Ocean World since the Nineteenth Century
Workshop
Workshop at the Institute for Social Anthropology (ISA), Austrian Academy of Sciences
Keynote: Professor Eric Tagliacozzo, Cornell University
Cholera—first described in the Ganges delta in 1817—spread globally in seven pandemics during the past two centuries. Most recently, some 30 countries worldwide reported cholera outbreaks in 2022 and a Lancet report from October 2022 revealed an alarming shortage of cholera vaccines that resulted in a shift from a two to a less lasting one-dose vaccination strategy. In fact, the 7th pandemic of cholera—which first was identified in the medical station of El Tor among pilgrims returning from Mecca in the early 20th century—is ongoing. A discussion of the scarcity in vaccines, however, was largely limited to relevant health channels and only some outbreak hotspots (such as Haiti in 2010) made it into the international media and gained scholarly attention beyond the medical and aid fields.
Cholera is an acute diarrhoeal infection caused by food or water contaminated with the bacterium Vibrio cholerae. Left untreated it might kill a person within hours. Despite the availability of a prophylactic Oral Cholera Vaccine (OCV) since 1985, cholera still is a life-threatening disease for the disadvantaged and the poor, rarely noticed in affluent parts of the world. Main factors that are congenial to the spread of cholera still include stressed water supplies, insanitary housing and the effects of environmental disasters. These include in particular earthquakes, weather extremes and certain hydrological events that are increasingly associated with climate-change such as floods. Other potentially causal factors are related to armed conflict, underreporting of data on national and local levels, the ongoing COVID-19 crisis and insufficiently resourced national health systems.
We take this alarming situation as an occasion to discuss the V. cholerae El Tor strain in both its historic dimensions and as a pressing public health issue along two main methodological pathways. Firstly, by tracing the historical events of cholera in the littorals and interconnected hinterlands of the Indian Ocean, known as the Indian Ocean World (IOW). The factors conductive to the spread of V. cholera mentioned above resulted in recent outbreaks and predispose countries of the IOW to future outbreaks. We therefore aim, secondly, to bring new insight from the archives on IOW’s cholera history in a fruitful dialogue with the lived experiences of recent and ongoing outbreaks in this region, including but not limited to the civil war-induced cholera in Yemen, more localized outbreaks in Kenya or the annual monsoonal outbreaks of endemic cholera serotypes in Bangladesh.
We invite contributions that focus on cholera in the Indian Ocean World and help to shed new light
- on the ecological geography and the diverse cultural and historic perceptions of disease causation, transmission and control;
- on the multilayered interactions between cholera outbreaks and non/human mobilities; whether assumed, blamed or evidence based;
- on the lived experiences of sufferers, care givers and health care professionals.
Contributions might have a rather scholarly or an applied character, drawing on archival studies or on field work; they might be situated inside or between medical anthropology, medical history, geography, IOW studies, public health and allied fields or within the work experience by health professionals and aid organizations.
As the ongoing COVID-19 crisis has upended international travel, we intend to organize the workshop in a hybrid mode: both in a webinar format as well as an in-person presentation at the Institute for Social Anthropology, Austrian Academy of Sciences in Vienna.
Please send an abstract of about 300 words and a short bio by January 15, 2023 to
eva-maria.knoll@oeaw.ac.at and vivekneelakantanster@gmail.com
The workshop Cholera in the Indian Ocean World since the Nineteenth Century is co-funded by and contributes to the SSHRC Partnership Appraising Risk.
Natur machen: Wissen, Praktiken und Technologien der Umweltgestaltung in der zweiten Hälfte des 20. Jahrhunderts
Workshop
Interdisziplinärer Workshop am Historischen Seminar der Universität Siegen
Die 1950er Jahre gelten als Zäsur der Umweltgeschichte. Davon zeugen Schlagworte wie jene des „1950er Syndroms“ (Pfister), der „Großen Beschleunigung“ (McNeill/Engelke), aber auch des Anthropozäns, dessen Beginn bisweilen auf die Nachkriegszeit datiert wird. Die tiefgreifenden Umwälzungen gesellschaftlicher Naturverhältnisse gingen indes einher mit einem weniger beachteten Wandel des Stellenwertes „der Natur“ innerhalb industrialisierter Gesellschaften. Auch wenn sich der Beginn dieser Entwicklung auf verschiedenen Feldern bereits in der ersten Hälfte des 20. Jahrhunderts ausmachen lässt, war Natur ab den 1950er Jahren flächendeckend nicht mehr etwas, von dem es sich zu emanzipieren galt, noch etwas zu Konservierendes. Vielmehr rückte das Herstellen von Natur in den Fokus – Natur wurde auf eine jeweils neue Weise problematisiert, in politische Rationalitäten integriert und erhielt spezifische Funktionen.
Exemplarisch dafür kann die Geschichte des Naturschutzes in beiden deutschen Staaten nach dem Zweiten Weltkrieg betrachtet werden. In der Bundesrepublik stand der sogenannte „Glasglockennaturschutz“ in der Kritik, die planerisch-gestalterische Landespflege setzte sich als Modernisierungsangebot durch. Ganz ähnlich galt in der DDR der konservierende Naturschutz als Relikt bürgerlicher Naturästhetik und wurde in die Landschaftspflege – bald „sozialistische Landeskultur“ – integriert. Aus Naturschutzgebieten wurden „Freilandlaboratorien“, Wissenspraktiken wie jene der Vegetationskartierung ließen sich in ein anwendungsorientiertes Forschungsprogramm zur (Re-)Konstruktion von Ökosystemen umschreiben.
Die an diesem Prozess beteiligten Akteure begründeten die Notwendigkeit Natur herzustellen – ob großflächige Landschaften oder kleinteiligeres Stadtgrün – oftmals damit, dass sie etwa ökonomische, medizinische und ökologische Funktionen erfülle. Darunter fielen mit jeweiligen Konjunkturen solche der Erholung sowie gesundheitspolitische Aufgaben im Allgemeinen oder auch solche der Regulation von Umweltmedien sowie des Klimaschutzes. Lassen sich manche dieser Vorstellungen bis um die Jahrhundertwende zurückverfolgen, wurden sie nun verwissenschaftlicht in umfängliche Planungsprozesse übersetzt. Natur galt aus dieser Perspektive als Mittel gegen jene negativen Effekte, die mit der „Großen Beschleunigung“ verbunden wurden. Dafür bedurfte es jedoch nicht nur Natur-Wissen, sondern eine anhand dieses Wissens gestaltete Natur. Nicht selten war dieser Zugriff auf die äußere Natur des Menschen verknüpft mit Vorstellungen seiner inneren Natur. Etwa dann, wenn eine dem Menschen naturgemäße Umwelt gefordert wurde, da sie der gesellschaftlichen Regulierung diene. Naturpolitik und ‑gestaltung sind in diesem Sinne auch als Regierungs- und Sozialtechnologien zu analysieren.
Natur machen beschreibt dieses heterogene Ensemble. Im Zentrum stehen Wissensformationen, Praktiken und Technologien wie etwa jene der Renaturierung und ‑kultivierung, der Landschafts‑, Stadt- und Humanökologie, der Ingenieurbiologie und Landschaftsplanung, des Arten- und Biotop- sowie des Prozessschutzes. Deren Beginn fällt zwar bisweilen in die erste Hälfte des 20. Jahrhunderts: Systematische Forschung, umfängliche Anwendung und Institutionalisierung erfuhren sie in der Regel jedoch erst ab den 1950er Jahren. Darin unterscheiden sie sich von Eingriffen in den Landschafts- und Naturhaushalt im Allgemeinen sowie von länger eingeübten Praktiken, etwa der Melioration. Es geht nicht um die „Eroberung der Natur“ (Blackbourn), sondern um ihre bewusste (Re-)Konstruktion in Form artifizieller Natur-Replika. Ein Beispiel dafür ist die seit den 1970er Jahren verstärkt auszumachende Praxis der Flussrenaturierung, die auf eine jahrhundertealte Praxis der Begradigung reagierte. Gerade darin zeigt sich indes die Widersprüchlichkeit des Natur Machens. Einerseits lassen sich diese neuen Naturen nur als techno-sozio-naturale Assemblagen denken, andererseits erfüllen sie ihre Funktion als Simulakrum darüber, dass sie ihre sozio- und technogenen Anteile verschleiern. Auch daher gingen Prozesse der Herstellung häufig einher mit ontologischen und ethischen Debatten darüber, was Natur ist – und was sie in der industrialisierten Gesellschaft sein soll.
Der Workshop will sich diesem Thema aus verschiedenen Perspektiven nähern und sucht nach Beiträgen aus den Geistes- und Sozialwissenschaften, die obige Gedanken aufnehmen. Sie können sowohl theoretisch als auch empirisch ausgerichtet sein und sich auf die Geschichte des Natur Machens im gesamten 20. Jahrhundert beziehen. Neben historischen Fallstudien etwa der Rekultivierungs- und Renaturierungspraxis – von devastierten Flächen des Tagebaus über Stadtbegrünung bis zur (Wieder-)Herstellung von Ökosystemen – und ihrer Rezeption interessieren auch Analysen obiger Disziplinen und Praktiken. Aus theoretischer Perspektive stellen sich etwa Fragen der Materialität und hybriden Ontologien innerhalb der Prozesse des Natur Machens sowie auch nach der Anwendbarkeit von in jüngerer Zeit diskutierten Konzepten wie jenem der Öko-Gouvernementalität.
Vorschläge für einen Vortrag (20 Minuten) im Umfang von ca. 300 Wörtern sowie ein kurzer akademischer Werdegang werden bis zum 31. Januar 2023 erbeten per E‑Mail an: martina.huttner@uni-siegen.de
Vorbehaltlich zur Verfügung stehender Mittel können Reise- und Übernachtungskosten übernommen werden.
Für Fragen stehen die Organisatoren des Workshops zur Verfügung:
Prof. Dr. Noyan Dinçkal, Europäische Wissens- und Kommunikationsgeschichte der Moderne, Universität Siegen (dinckal@geschichte.uni-siegen.de)
Dr. Philipp Kröger, Geschichte der Gegenwart, Universität Siegen (philipp.kroeger@uni-siegen.de)
Socialist Governmentality? Healthcare, technologies of the self, and subjectification in European state socialism, 1945–1990
Workshop
Workshop at the Institute for the History of Medicine and Ethics in Medicine – Charité Universitätsmedizin Berlin
The two-day workshop aims to discuss the question, whether and how Michel Foucault’s ideas on liberal (and capitalist) “governmentality” can be productively applied on contemporary or historical socialist societies. It intends to take a closer look at governmentality, not from the perspective of policy makers or the power apparatus, but by using the example of healthcare in post-1945 Socialist Europe.
Socialist Governmentality? Healthcare, technologies of the self, and subjectification in European state socialism, 1945–1990
After the collapse of the Cold War two-bloc system in 1989/90, historiography and social sciences tended to sharply contrast post-World War II socialist and non-socialist societies. Recently, the focus has shifted to a more comprehensive and nuanced perspective interested in differences as much as parallels, including intersections and convergences between the two systems. Some even ask, if the Iron Curtain might not be better described as a permeable Nylon Curtain. In this context, a more general question has emerged: whether and how Michel Foucault’s ideas on liberal (and capitalist) “governmentality”, first formulated in 1977/78, can be productively applied on contemporary or historical socialist societies. After all, at first glance the liberal and individualized technologies of the self stand in sharp contrast to the ideologically shaped and administratively mediated formation of a “socialist personality”.
It is hardly controversial that the Foucauldian concept of “biopolitics” – securing and enhancing “life” of the governed “population” – is a very useful tool for analyzing both socialist and non-socialist government policies when it comes to, for example, birth regulation and pronatalism, agricultural policies or preventive healthcare regimes. “Governmentality” as defined by Foucault, however, characterizes a kind of biopolitics which seems to be specifically connected to a way of live in neoliberal-democratic and capitalist societies. The concept focuses on “private” lifestyles (diet and physical activity, sex, emotions, etc.). The shaping of individual behavior and subjectivity through a “conduct of conduct” ensures that the individual’s striving for autonomy and their capacity for self-control, self-reliance, and reflexivity serve the (presumed) common good. Governmentality, then, describes how self-conduct simultaneously “governs” others by governing oneself in ways that are desirable for the polity and acceptable to the governed.
In the last decades, the concept of governmentality helped to understand how neoliberalism made citizens responsible for the former tasks of the postwar-welfare state and how the market redistributed those tasks to the individual (subject). From this theoretical standpoint, governmentality seems incompatible with socialist ideology, state control, physical repression, and the prerogative of the collective. In recent years, however, we learned that pursuing a bottom-up perspective can provide additional or even deeper insights into the complexities of socialist realities. This is the aim of the proposed workshop: To take a closer look at governmentality, not from the perspective of policy makers or the power apparatus, but by using the example of healthcare in post-1945 Socialist Europe.
We propose to explore concrete examples from everyday healthcare settings – in psychological counseling, clinical social work, and community medicine, in treating chronic diseases and in preventive healthcare, in school education and the workplace, in healthy leisure activities, and in shaping a happy family life. What mechanisms of dissemination, reception, and mediation of self-techniques can be found and analyzed? Were elements or patterns of governmentality transferred from the West to the East or do we also find “home-grown” inventions? Were socialist societies more “liberal” than they realised and wanted to be? If so, what does this mean for the way we look at governmentality in “Western” societies?
The workshop will be held in Berlin on September 13–14, 2023. We plan this to be a fairly small group of people to make the discussions as open and lively as possible. To facilitate a productive discussion, we invite papers from ongoing research that will be distributed to participants (and commentators) in advance. Expenses for travel and hotel will be covered. We welcome abstracts in English of no more than 300 words. Please send an abstract and a short CV by e‑mail (henriette.voelker@charite.de) by December 19, 2022.
The workshop is organized by Dr. Alexa Geisthövel and Laura Hottenrott (both ERC Leviathan) and Prof. Dr. Viola Balz (FOR “normal#verrückt”). We gratefully acknowledge the support of the European Research Council (ERC Grant 854503) and the German Research Foundation (DFG FOR 3031). Please do not hesitate to contact us if you have any questions.
Kontakt
alexandra.geisthoevel@charite.de
laura.hottenrott@charite.de
viola.balz@charite.de
volker.hess@charite.de