Ayo Wahlberg | University of Copenhagen (original) (raw)
Articles by Ayo Wahlberg
Annual Review of Anthropology, 2014
ABSTRACT In a historical perspective, selective reproduction is nothing new. Infanticide, abandon... more ABSTRACT In a historical perspective, selective reproduction is nothing new. Infanticide, abandonment, and selective neglect of children have a long history, and the widespread deployment of sterilization and forced abortion in the 20th century has been well documented. Yet in recent decades selective reproduction has been placed under the aegis of science and expertise in novel ways. New laboratory and clinical techniques allow for the selective fertilization of gametes, implantation of embryos, or abortion of fetuses. Although they will often overlap with assisted reproductive technologies (ARTs), what we term selective reproductive technologies (SRTs) are of a more specific nature: rather than aiming at overcoming infertility, they are used to prevent or allow the birth of certain kinds of children. This review highlights anthropological research into SRTs in different parts of the world, discussing how selective reproduction engages with issues of long-standing theoretical concern in anthropology such as politics, kinship, gender, religion, globalization, and inequality.
Economy and Society, 2015
Economy and Society, 2015
ABSTRACT
History of The Human Sciences, 2008
Does it work? This question lies at the very heart of the kinds of controversies that have surrou... more Does it work? This question lies at the very heart of the kinds of controversies that have surrounded complementary and alternative medicines (such as herbal medicine) in recent decades. In this article, I argue that medical anthropology has played a pivotal and largely overlooked role in taking the sham out of the placebo effect with important implications for what it
Social Science & Medicine, 2007
The figure of the 'miracle cure'-peddling quack pretending spectacular properties for worthless t... more The figure of the 'miracle cure'-peddling quack pretending spectacular properties for worthless tonics is iconic. From their 19th century traveling wagon shows to their 21st century Internet spam scams, hucksters and cranks have been consistently targeted by health authorities as a danger to public health. Yet, in this paper, I argue that this is only one form that the problem of 'quackery' has taken in the past two centuries or so in the United Kingdom. Just as Roy Porter showed how the mid-19th century professionalization of medicine gave rise to a 'quackery with a difference' as a whole range of new medical movements-homoeopathy, hydropathy, medical botany, mesmerism-actively denounced allopathic or modern medicine, I will suggest that the late 20th century birth of 'complementary and alternative medicine' (CAM) has resulted in yet another transformation in quackery. By examining the ways in which regulatory authorities in the UK have come to address what is invariably described as a 'growing interest in CAM', I will show how the problem of quackery today is increasingly located in an ethical field of practitioner competency, qualifications, conduct, responsibility and personal professional development, almost (but not quite) regardless of the form of therapy in question. r
Social Science & Medicine, 2013
One of the features of advanced life sciences research in recent years has been its international... more One of the features of advanced life sciences research in recent years has been its internationalisation, with countries such as China and South Korea considered 'emerging biotech' locations. As a result, cross-continental collaborations are becoming common generating moves towards ethical and legal standardisation under the rubric of 'global bioethics'. Such a 'global', 'Western' or 'universal' bioethics has in turn been critiqued as an imposition upon resource-poor, non-Western or local medical settings. In this article, we propose that a different tack is necessary if we are to come to grips with the ethical challenges that inter-continental biomedical research collaborations generate. In particular we ask how national systems of ethical governance of life science research might cope with increasingly global research collaborations with a focus on Sino-European collaboration. We propose four 'spheres' - deliberation, regulation, oversight and interaction - as a helpful way to conceptualise national systems of ethical governance. Using a workshop-based mapping methodology (workshops held in Beijing, Shanghai, Changsha, Xian, Shenzen and London) we identified three specific ethical challenges arising from cross-continental research collaborations: (1) ambiguity as to which regulations are applicable; (2) lack of ethical review capacity not only among ethical review board members but also collaborating scientists; (3) already complex, researcher-research subject interaction is further complicated when many nationalities are involved.
Health, 2006
It is often suggested that, in the past 50 years, Vietnam has experienced a traditional medicine ... more It is often suggested that, in the past 50 years, Vietnam has experienced a traditional medicine ‘revival’ that can be traced back to late President Ho Chi Minh's 1955 appeal ‘to study means of uniting the effects of oriental remedies with those of Europe’. In this article, I demonstrate how traditional herbal medicine came to be recruited as an important
East Asian Science, Technology and Society, 2014
ABSTRACT This article examines the making of a national medicine in Vietnam. How can it be that t... more ABSTRACT This article examines the making of a national medicine in Vietnam. How can it be that the medical traditions in Vietnam came to be described as Vietnamese during the course of the twentieth century? In this article, I suggest that historical contingencies in Vietnam have facilitated what might be thought of as a “doctrine of combination,” somewhat in contrast to the institutionalized and contentious separation of, for example, Chinese and Korean medicine from modern medicine. In particular, I show how when it came to traditional medicine, Hồ Chí Minh and the people around him responsible for health-care-related issues were on the “offensive” from the very outset of their nation-building efforts.
New Genetics and Society, 2009
Vietnam has been described by many commentators as being about two decades “behind” many of its E... more Vietnam has been described by many commentators as being about two decades “behind” many of its East Asian neighbors in terms of economic and social development, although a series of economic reforms initiated in 1986 under a banner of (renovation) are credited with closing the gap. At the same time, as has been the case in many other socialist countries, science and technology in Vietnam have been seen as central forces for national development, progress and health. Although molecular biology and genetics (especially in agricultural but also medical fields) have come to play an important role in successive government-sponsored science and technology programs since the mid-1990s, Vietnam is not considered to be one of Asia's “emerging biotech giants”. By analyzing national efforts to revive traditional medicine in Vietnam, I propose in this paper empirically to restore the concept of biopolitics as one of the poles of a biopower that continues to administer, optimize and multiply human vitality. I will show how a national effort to revive traditional medicine has been both biopolitical (when contributing to the improvement of “population health”) and a case of bionationalism (when contributing to the “building of national culture”).
Third World Quarterly, May 2012
Third World Quarterly, 2012
ABSTRACT Asia's dramatic entry on to the global biotech scene has not gone unnoticed by c... more ABSTRACT Asia's dramatic entry on to the global biotech scene has not gone unnoticed by commentators and social scientists. Countries like China, India, South Korea and Singapore have been identified as ‘emerging biotech powers’. Consequently scholars have begun examining the particularities of how biotechnologies (eg stem cell science, genetic testing and reproductive medicine) have come to be taken up and grounded in a variety of cultural, legal and socioeconomic contexts. They have also examined how governments, scientists, clinicians and others have been engaged in efforts to build up endogenous biotech sectors as a part of nation-building strategies. In this article, rather than attempting to answer questions of what makes biotechnology particularly Asian, I will instead investigate how demarcations and boundaries are mooted in global negotiations of what constitutes ‘good’ biotechnology. The analysis is based on a collaborative project between Chinese and European scientists and experts on the ethical governance of biomedical and biological research. I show how an underlying condition for the negotiations that took place within this collaboration was the proposition that difference matters when it comes to developing, organising, carrying out and overseeing biotechnological research in a particular country.
BioSocieties, 2008
ABSTRACT Herbal medicine has long been contrasted to modern medicine in terms of a holistic appro... more ABSTRACT Herbal medicine has long been contrasted to modern medicine in terms of a holistic approach to healing, vitalistic theories of health and illness, and an emphasis on the body’s innate self-healing capacities. At the same time, since the early twentieth century, the cultivation, preparation and mass production of herbal medicines have become increasingly industrialized, scientificized and commercialized. What is more, phytochemical efforts to identify and isolate particular ‘active ingredients’ from whole-plant extracts have intensified, often in response to increasing regulatory scrutiny of the safety and quality of herbal medicinal products. In this article, I examine whether describing these developments in terms of a biomedical ‘colonization’ of herbal medicine, as has been common, allows us to sufficiently account for the mundane collaborative efforts of herbalists, botanists, phytochemists, pharmacologists, toxicologists and clinicians to standardize and develop certain herbal remedies. By focusing on recent efforts to industrialize and scientifically develop a ‘Western’ (St John’s Wort) and a Vietnamese (Heantos) herbal remedy, I suggest that herbal medicine has come to be not so much colonized as normalized, with herbalists, phytochemists and pharmacologists working to develop standardized production procedures, as well as to identify ‘plausible’ explanations for the efficacy of these remedies.
Within the past 10-15 years, international development has seen a dramatic proliferation in parti... more Within the past 10-15 years, international development has seen a dramatic proliferation in participatory and empowering interventions seeking to help people help themselves. Common to these otherwise heterogeneous efforts is a claim not to take away peoples' initiatives and responsibilities for their own lives. Often, these types of participatory initiatives are formulated in opposition to a past development that was
In recent years, sociological examinations of genetics, therapeutic cloning, neuroscience and tis... more In recent years, sociological examinations of genetics, therapeutic cloning, neuroscience and tissue engineering have suggested that ‘life itself’ is currently being transformed through technique with profound implications for the ways in which we understand and govern ourselves and others. In this paper, argue that a growing focus on frontier technologies in the life sciences in discussions about bio-power today has
Clinical Ethics, 2008
Selection in reproductive medicine today relies on normative assessments of what 'good life&... more Selection in reproductive medicine today relies on normative assessments of what 'good life' consists of. This paper explores the terms under which such assessments are made by focusing on three particular concepts of 'quality': quality of life, biological quality and population quality. It is suggested that the apparently conflicting hypes, hopes and fears that surround reproductive medicine can co-circulate because
Qualitative Health Research, 2014
Commentators such as Goldacre, Dawkins, and Singh and Ernst are worried that the rise in compleme... more Commentators such as Goldacre, Dawkins, and Singh and Ernst are worried that the rise in complementary and alternative medicine (CAM) represents a flight from science propagated by enemies of reason. We outline what kind of problem CAM use is for these commentators, and find that users of CAM have been constituted as duped, ignorant, irrational, or immoral in explaining CAM use. However, this form of problematization can be described as a flight from social science. We explore CAM use in light of a rigorous and robust social scientific body of knowledge about how individuals engage with CAM. By pointing to the push and pull factors, CAM user's experiences of their body, and the problem of patient choice in CAM use, we summarize some of the key findings made by social scientists and show how they trouble many of the reasoned assumptions about CAM use.
Economy and Society , 2015
The concepts of governmentality and biopolitics were contemporaneous and interlinked in Michel Fo... more The concepts of governmentality and biopolitics were contemporaneous and interlinked in Michel Foucault’s initial analyses. These foregrounded how in the eighteenth century the population emerged as a ‘natural-cultural reality’ resulting from an integration of biological and economic knowledge. Subsequent research on biopolitics and governmentality has tended to separate the concepts, differentiating into distinct research traditions each with different intellectual pathways. We propose to bring these conceptual innovations together to understand contemporary problems of the government of life, that is, of managing, controlling and optimizing a living population. In this domain, the natural/biological continues to intersect with the social/cultural in novel and unexpected ways. Straddling the specter of biopolitics, we examine four dimensions of the concept: vital threats and the resurrection of death power, the interplay of sovereignty, discipline and security, governmentalization through medical normalization, and ‘securitization’ of life as circulations and open series. The article also introduces this special feature on the government of life in which significant scholars explores issues of population management by drawing upon, debating, and developing the conceptual heritage of Foucault.
Keywords: Biopolitics, governmentality, epidemics, scarcity, health statistics, Foucault.
Annual Review of Anthropology, 2014
ABSTRACT In a historical perspective, selective reproduction is nothing new. Infanticide, abandon... more ABSTRACT In a historical perspective, selective reproduction is nothing new. Infanticide, abandonment, and selective neglect of children have a long history, and the widespread deployment of sterilization and forced abortion in the 20th century has been well documented. Yet in recent decades selective reproduction has been placed under the aegis of science and expertise in novel ways. New laboratory and clinical techniques allow for the selective fertilization of gametes, implantation of embryos, or abortion of fetuses. Although they will often overlap with assisted reproductive technologies (ARTs), what we term selective reproductive technologies (SRTs) are of a more specific nature: rather than aiming at overcoming infertility, they are used to prevent or allow the birth of certain kinds of children. This review highlights anthropological research into SRTs in different parts of the world, discussing how selective reproduction engages with issues of long-standing theoretical concern in anthropology such as politics, kinship, gender, religion, globalization, and inequality.
Economy and Society, 2015
Economy and Society, 2015
ABSTRACT
History of The Human Sciences, 2008
Does it work? This question lies at the very heart of the kinds of controversies that have surrou... more Does it work? This question lies at the very heart of the kinds of controversies that have surrounded complementary and alternative medicines (such as herbal medicine) in recent decades. In this article, I argue that medical anthropology has played a pivotal and largely overlooked role in taking the sham out of the placebo effect with important implications for what it
Social Science & Medicine, 2007
The figure of the 'miracle cure'-peddling quack pretending spectacular properties for worthless t... more The figure of the 'miracle cure'-peddling quack pretending spectacular properties for worthless tonics is iconic. From their 19th century traveling wagon shows to their 21st century Internet spam scams, hucksters and cranks have been consistently targeted by health authorities as a danger to public health. Yet, in this paper, I argue that this is only one form that the problem of 'quackery' has taken in the past two centuries or so in the United Kingdom. Just as Roy Porter showed how the mid-19th century professionalization of medicine gave rise to a 'quackery with a difference' as a whole range of new medical movements-homoeopathy, hydropathy, medical botany, mesmerism-actively denounced allopathic or modern medicine, I will suggest that the late 20th century birth of 'complementary and alternative medicine' (CAM) has resulted in yet another transformation in quackery. By examining the ways in which regulatory authorities in the UK have come to address what is invariably described as a 'growing interest in CAM', I will show how the problem of quackery today is increasingly located in an ethical field of practitioner competency, qualifications, conduct, responsibility and personal professional development, almost (but not quite) regardless of the form of therapy in question. r
Social Science & Medicine, 2013
One of the features of advanced life sciences research in recent years has been its international... more One of the features of advanced life sciences research in recent years has been its internationalisation, with countries such as China and South Korea considered 'emerging biotech' locations. As a result, cross-continental collaborations are becoming common generating moves towards ethical and legal standardisation under the rubric of 'global bioethics'. Such a 'global', 'Western' or 'universal' bioethics has in turn been critiqued as an imposition upon resource-poor, non-Western or local medical settings. In this article, we propose that a different tack is necessary if we are to come to grips with the ethical challenges that inter-continental biomedical research collaborations generate. In particular we ask how national systems of ethical governance of life science research might cope with increasingly global research collaborations with a focus on Sino-European collaboration. We propose four 'spheres' - deliberation, regulation, oversight and interaction - as a helpful way to conceptualise national systems of ethical governance. Using a workshop-based mapping methodology (workshops held in Beijing, Shanghai, Changsha, Xian, Shenzen and London) we identified three specific ethical challenges arising from cross-continental research collaborations: (1) ambiguity as to which regulations are applicable; (2) lack of ethical review capacity not only among ethical review board members but also collaborating scientists; (3) already complex, researcher-research subject interaction is further complicated when many nationalities are involved.
Health, 2006
It is often suggested that, in the past 50 years, Vietnam has experienced a traditional medicine ... more It is often suggested that, in the past 50 years, Vietnam has experienced a traditional medicine ‘revival’ that can be traced back to late President Ho Chi Minh's 1955 appeal ‘to study means of uniting the effects of oriental remedies with those of Europe’. In this article, I demonstrate how traditional herbal medicine came to be recruited as an important
East Asian Science, Technology and Society, 2014
ABSTRACT This article examines the making of a national medicine in Vietnam. How can it be that t... more ABSTRACT This article examines the making of a national medicine in Vietnam. How can it be that the medical traditions in Vietnam came to be described as Vietnamese during the course of the twentieth century? In this article, I suggest that historical contingencies in Vietnam have facilitated what might be thought of as a “doctrine of combination,” somewhat in contrast to the institutionalized and contentious separation of, for example, Chinese and Korean medicine from modern medicine. In particular, I show how when it came to traditional medicine, Hồ Chí Minh and the people around him responsible for health-care-related issues were on the “offensive” from the very outset of their nation-building efforts.
New Genetics and Society, 2009
Vietnam has been described by many commentators as being about two decades “behind” many of its E... more Vietnam has been described by many commentators as being about two decades “behind” many of its East Asian neighbors in terms of economic and social development, although a series of economic reforms initiated in 1986 under a banner of (renovation) are credited with closing the gap. At the same time, as has been the case in many other socialist countries, science and technology in Vietnam have been seen as central forces for national development, progress and health. Although molecular biology and genetics (especially in agricultural but also medical fields) have come to play an important role in successive government-sponsored science and technology programs since the mid-1990s, Vietnam is not considered to be one of Asia's “emerging biotech giants”. By analyzing national efforts to revive traditional medicine in Vietnam, I propose in this paper empirically to restore the concept of biopolitics as one of the poles of a biopower that continues to administer, optimize and multiply human vitality. I will show how a national effort to revive traditional medicine has been both biopolitical (when contributing to the improvement of “population health”) and a case of bionationalism (when contributing to the “building of national culture”).
Third World Quarterly, May 2012
Third World Quarterly, 2012
ABSTRACT Asia's dramatic entry on to the global biotech scene has not gone unnoticed by c... more ABSTRACT Asia's dramatic entry on to the global biotech scene has not gone unnoticed by commentators and social scientists. Countries like China, India, South Korea and Singapore have been identified as ‘emerging biotech powers’. Consequently scholars have begun examining the particularities of how biotechnologies (eg stem cell science, genetic testing and reproductive medicine) have come to be taken up and grounded in a variety of cultural, legal and socioeconomic contexts. They have also examined how governments, scientists, clinicians and others have been engaged in efforts to build up endogenous biotech sectors as a part of nation-building strategies. In this article, rather than attempting to answer questions of what makes biotechnology particularly Asian, I will instead investigate how demarcations and boundaries are mooted in global negotiations of what constitutes ‘good’ biotechnology. The analysis is based on a collaborative project between Chinese and European scientists and experts on the ethical governance of biomedical and biological research. I show how an underlying condition for the negotiations that took place within this collaboration was the proposition that difference matters when it comes to developing, organising, carrying out and overseeing biotechnological research in a particular country.
BioSocieties, 2008
ABSTRACT Herbal medicine has long been contrasted to modern medicine in terms of a holistic appro... more ABSTRACT Herbal medicine has long been contrasted to modern medicine in terms of a holistic approach to healing, vitalistic theories of health and illness, and an emphasis on the body’s innate self-healing capacities. At the same time, since the early twentieth century, the cultivation, preparation and mass production of herbal medicines have become increasingly industrialized, scientificized and commercialized. What is more, phytochemical efforts to identify and isolate particular ‘active ingredients’ from whole-plant extracts have intensified, often in response to increasing regulatory scrutiny of the safety and quality of herbal medicinal products. In this article, I examine whether describing these developments in terms of a biomedical ‘colonization’ of herbal medicine, as has been common, allows us to sufficiently account for the mundane collaborative efforts of herbalists, botanists, phytochemists, pharmacologists, toxicologists and clinicians to standardize and develop certain herbal remedies. By focusing on recent efforts to industrialize and scientifically develop a ‘Western’ (St John’s Wort) and a Vietnamese (Heantos) herbal remedy, I suggest that herbal medicine has come to be not so much colonized as normalized, with herbalists, phytochemists and pharmacologists working to develop standardized production procedures, as well as to identify ‘plausible’ explanations for the efficacy of these remedies.
Within the past 10-15 years, international development has seen a dramatic proliferation in parti... more Within the past 10-15 years, international development has seen a dramatic proliferation in participatory and empowering interventions seeking to help people help themselves. Common to these otherwise heterogeneous efforts is a claim not to take away peoples' initiatives and responsibilities for their own lives. Often, these types of participatory initiatives are formulated in opposition to a past development that was
In recent years, sociological examinations of genetics, therapeutic cloning, neuroscience and tis... more In recent years, sociological examinations of genetics, therapeutic cloning, neuroscience and tissue engineering have suggested that ‘life itself’ is currently being transformed through technique with profound implications for the ways in which we understand and govern ourselves and others. In this paper, argue that a growing focus on frontier technologies in the life sciences in discussions about bio-power today has
Clinical Ethics, 2008
Selection in reproductive medicine today relies on normative assessments of what 'good life&... more Selection in reproductive medicine today relies on normative assessments of what 'good life' consists of. This paper explores the terms under which such assessments are made by focusing on three particular concepts of 'quality': quality of life, biological quality and population quality. It is suggested that the apparently conflicting hypes, hopes and fears that surround reproductive medicine can co-circulate because
Qualitative Health Research, 2014
Commentators such as Goldacre, Dawkins, and Singh and Ernst are worried that the rise in compleme... more Commentators such as Goldacre, Dawkins, and Singh and Ernst are worried that the rise in complementary and alternative medicine (CAM) represents a flight from science propagated by enemies of reason. We outline what kind of problem CAM use is for these commentators, and find that users of CAM have been constituted as duped, ignorant, irrational, or immoral in explaining CAM use. However, this form of problematization can be described as a flight from social science. We explore CAM use in light of a rigorous and robust social scientific body of knowledge about how individuals engage with CAM. By pointing to the push and pull factors, CAM user's experiences of their body, and the problem of patient choice in CAM use, we summarize some of the key findings made by social scientists and show how they trouble many of the reasoned assumptions about CAM use.
Economy and Society , 2015
The concepts of governmentality and biopolitics were contemporaneous and interlinked in Michel Fo... more The concepts of governmentality and biopolitics were contemporaneous and interlinked in Michel Foucault’s initial analyses. These foregrounded how in the eighteenth century the population emerged as a ‘natural-cultural reality’ resulting from an integration of biological and economic knowledge. Subsequent research on biopolitics and governmentality has tended to separate the concepts, differentiating into distinct research traditions each with different intellectual pathways. We propose to bring these conceptual innovations together to understand contemporary problems of the government of life, that is, of managing, controlling and optimizing a living population. In this domain, the natural/biological continues to intersect with the social/cultural in novel and unexpected ways. Straddling the specter of biopolitics, we examine four dimensions of the concept: vital threats and the resurrection of death power, the interplay of sovereignty, discipline and security, governmentalization through medical normalization, and ‘securitization’ of life as circulations and open series. The article also introduces this special feature on the government of life in which significant scholars explores issues of population management by drawing upon, debating, and developing the conceptual heritage of Foucault.
Keywords: Biopolitics, governmentality, epidemics, scarcity, health statistics, Foucault.
Journal of the Royal Anthropological Institute, 2000
British Journal of Sociology, 2006
Social Anthropology, 2011
Social Anthropology, 2014
Social Anthropology, 2012
Social Anthropology, 2014
Medical Anthropology Quarterly, 2014
PROGRAM: 09h15 Marie Gaille (INSHS, CNRS), introduction 09h30- 10h30 Marielle Macé, Dire... more PROGRAM:
09h15
Marie Gaille (INSHS, CNRS), introduction
09h30- 10h30
Marielle Macé, Directrice de recherche, CRAL, UMR 8556, CNRS/EHESS
Chronic breathing — on respiratory disease and forms of life
10h30-11h30
Todd Meyers, Associate Prof., Marjorie Bronfman, Chair in Social Studies of Medicine, McGill University
An Anthropologist reads Canguilhem reading Goldstein in the Clinic
11h30-12h30
Agathe Camus, Post-doctoral fellow, Sphere UMR 7219, Université Paris Cité
Chronic living & ordinary life
Pause déjeuner
14h30-15h30
Ayo Wahlberg, Prof., Anthropology, University of Copenhagen
The birth of “energy limiting conditions”: managing everyday lives with invisible disability in Denmark
15h30-16h30
Anne Gonon, Graduate School of Global Studies, Doshisha University, Kyoto, Japan
title to be determined
16h30-17h30
Estelle Ferrarese, Prof., Philosophy, CURAPP-ESS, UMR 7319, Université Picardie Jules Verne
Rhythm of life, rhythm of capitalism. Disabilities and ruptures in the capitalist form of life
ARGUMENT:
The place of chronic illness in daily life and the way in which it seems to be intertwined with one’s existence, in its biological, social and existential dimensions, have led us to speak of "vécu chronique" (1) and before us, Ayo Walhberg, to coin the idea of "chronic living" (2), in an attempt to grasp the specific nature of the life and experience of people suffering from one or more non-curable long-term illnesses.
In the wake of the work of Georges Canguilhem, in particular, and of the conception of illness as "another pace of life", these proposals, based on conceptual analyses and joining the analysis of certain ethnographic materials, highlight the intertwining of biological, social and existential dimensions in life with chronic illness, showing, for example, how "somatic disturbances spill over [...] into the social world and vice versa". As Ayo Walhberg and Lenore Manderson write, "everyday activities of parenting, making food, eating, celebrating, socializing, bathing, exercising, working, and more are shaped into new ’kinds of living’ by the specificities and exigencies of the medical condition(s) at stake, treatment(s), and related requirements of care and support" (3).
This issue is at the heart of the ANR Epiphinore project, which aims at generating new knowledge for the design of care and care pathways. In this project, our point of departure is the desire for a “normal life”, a "life as it was before", an "ordinary" life, as expressed by many people currently living in medical institutions or at home, under medicalized conditions due to a chronic and/or degenerative disease. Our guiding question is: how is this desire or aspiration to be understood? What is its content?
In order to contribute to the elaboration of an answer both on a conceptual and anthropological level, it seemed necessary to us to turn to the contribution of the reflection in terms of life forms. Thus, this workshop will aim at assessing the scope of these philosophical orientations, and examine up to which extent they are consistent or open up different conceptual and normative frames to understand of chronic condition and the aspiration to a “normal life”, a “life as before”, an “ordinary life”.
Indeed, these attempts to think of something like a ’chronic living’ meet, on certain points, the questions and concepts stemming from the relatively recent work on the forms of life (4). The emphasis placed in this research on the articulation of the social and the biological; the interest in what is done, practiced and implemented collectively and individually, for example, in the event of disasters that profoundly disrupt the lifestyles of the populations affected; the attention paid, in this context, to the forms that are invented or transformed and to the way in which "individuals who have become vulnerable use their bodies, become involved, work on their environment, and establish a new relationship with society" (5) probably give birth to a fruitful framework for thinking about situations of living in a chronically pathological state.
We propose to approach these questions with a special focus on the temporalities that cross, shape and transform certain "forms of life", and the processes of dislocation, adjustment and reconfiguration that bring these often complex and intertwined temporalities into play. In the case of certain chronic illnesses, several temporalities are at stake: that of the body, its transformations and sufferings; that of the illness and its often erratic evolution; that of care and medical treatment, but also that of social life, which is sometimes woven around the demands of the illness, as well as being able to put them on hold.
What form(s) of life are these complex temporalities likely to accommodate?
Among others, here are few questions that could be addressed:
– Without reducing the great diversity of pathological experiences to a single category designated by the term ’chronic illness’, and taking care, on the contrary, to allow for the multiplicity and singularity of experiences - which the notion of ’form of life’ allows - we will thus be able to ask ourselves whether there is anything like a common structure of experience in the experience of chronic illness and what role temporality plays in it.
– Can reflection on life forms be enriched by the consideration of such an experience and find in the attempt to apprehend something like a ’chronic experience’ and in this attention to the intricacy of temporalities something other than a source of examples?
References:
(1) Agathe Camus, Marie Gaille, Mathilde Lancelot, éditorial, dossier « Maladies chroniques et situations de handicap : expériences vécues et formes d’accompagnement tout au long de la vie », Alter, Revue européenne d’études sur le handicap, à paraître (2022)
(2) Lenore Manderson, Ayo Walhberg, « Chronic Living in a Communicable World », Medical Anthropology, Cross Cultural Studies in Health and Illness, vol. 39, 2020
(3) Lenore Manderson, Ayo Walhberg, « Chronic Living in a Communicable World », Medical Anthropology, Cross Cultural Studies in Health and Illness, vol. 39, 2020, p. 429
(4) Estelle Ferrarese et Sandra Laugier (dir.), Formes de vie, Paris, CNRS Editions, 2018
(5) Anne Gonon, « L’espace de la catastrophe. Naissance de sujets et nouvelles formes de vie », dans Estelle Ferrarese et Sandra Laugier (dir.), Formes de vie, Paris, CNRS Editions, 2018, p. 326