Comps Readings List 1: Medicine

A. Medicine as a Cultural System
1) Foucault, Michel. 1994. The Birth of the Clinic: An Archaeology of Medical Perception. New York: Vintage Books. MEDICINE
Modern medicine has marked its date of birth around the end of CXVIII. According to Foucault, this was the time in which medicine reflected on itself, identified the origin of its positive science beyond any theory in the effective modesty of what is perceived. Indeed, this empiricism does not rest in new discoveries but in the reorganization of the medical gaze produced by the first modern clinicians. By the beginning of CXIX physicians started to describe what was lying below the threshold of visibility and representation. The medical art of dissection marks among the most profound epistemic turns in the history of biomedicine. From the Renaissance onward, dissection presented new ways of observing, understanding, and, certainly, breaking up the body. This newly equipped medical gaze, consequently, generated new kinds of knowledge and, eventually, bio and sociopolitical power. According to Foucault, the patient became, in the development of biomedicine as a cultural discourse, an objectified and unnecessary part of the treatment process.  The culturally bounded gaze of medicine was focused on localizing disease in the fragmented tissues of the human body. 

2) Payer, Lynn. 1988. Medicine and Culture. New York: Henry Holt. MEDICINE
In this book, Payer uses her vast medical knowledge as medical journalist to produce a cultural description of health care systems in USA, England, France and West Germany. Her main sources of data are national statistics and interviews with physicians. The goal of this book is to reflect on the national cultural biases each country has in relation to how medicine is practiced. In the foreword one physician says, “Three elements characterize the essence of the clinical transaction between patient and physician: technology, caring, and values” (9). Precisely, these cultural values that influence each national medical practice are the core of this book. Payer suggests that a “national character”, a “conglomeration of values, priorities, and actions that changes over time, albeit slowly” (21), influences the different ways medical practitioners see “the facts”, choose certain treatments, and ultimately shapes how medicine is practiced in each country. In France, the intellectual culture and Cartesian thought are central. The liver epitomizes the core source of medical problems. There is also a prominence on the body’s defense to pathogens and improving the immune system. In contrast, in Germany, the concepts of Gestalt (the total) and Geist (spirit) are significant. The heart is key and therefore illness and death are likely attributed to cardiac dysfunction. In England, economy is fundamental for understanding medical practice. In comparison, English physicians do a lesser amount of medical intervention than the other professionals and so there is a higher margin for disease. In fact, it is not infrequent that physicians will “do nothing”, which is tolerable (something unthinkable in USA). English people are fixated with their bowels and the notion of self-poisoning is historically relevant. In England, to “catch a chill” is a culturally complex phenomenon, and so illness is more likely to be attributed to external causes (i.e. germs). Finally, in the USA, physicians have a trend to act and do something. Indeed, often their actions are very invasive and aggressive, and always mediated by technology. The body is seen as a working machine, and therefore when pieces of the body are “out of order” they are taken out (this explains the technological advancement in surgery). Similarly with England, there is a tendency for explaining illness in relation with external agents.

3) Kleinman, Arthur. 1981. Patients and healers in the context of culture: An Exploration of the Borderland between Anthropology, Medicine, and Psychiatry. Berkeley: University of California Press. MEDICINE
This is a path-breaking work within medical anthropology written in 1980. An important concept in Kleinman's work is that of Explanatory Models of illness. An Explanatory Model (EM) is the explanation a person gives for a sickness episode; this is especially important since people in the various sectors have a tendency to have different, and sometimes conflicting, EMs. According to Kleinman, cultural health care systems are arranged by a combination of individuals undergoing and treating illness and the social institutions where contacts between patients/clients and health providers take place. Each cultural medical system consists of "a local cultural system composed of three overlapping parts: the popular, the professional, and folk sectors"(50). Therefore, these sectors have different characteristics. The popular sector is "the lay, non-professional, non-specialist, popular culture arena in which illness is first defined and health care activities initiated" (50). Kleinman claims that between 70-90% of illness conditions are dealt within this popular sector, which is the first sphere in which illness is perceived, experienced, labeled, sanctioned, and even self-treated; “The sick person and his family utilize beliefs and values about illness that are part of the cognitive structure of the popular culture" (52). In the popular sector, healer’s qualifications are based on experience rather than professional education and licensure. The professional sector, on the other hand, is organized in terms of healing professions, those authorized as such by the professional medical culture. In this sector, health professionals have to be formally educated and legally certified. Patient-healer relations usually disagree in their social and cultural standards, beliefs and assumptions. Practices in this sector are hegemonized by an orientation toward biomedicine. Disease is seen as a biological and psychological anomaly. Whereas the folk sector is the non-professional, non-bureaucratic, specialist sector, considering both “sacred” and “secular” healers: folk healers, shamans, and folk-psychotherapists. In this sector, treatment strategies are peformed to correct imbalance and promote healing process. Healers frequently have little formal training, even if some have completed an apprenticeship with a known healer. Healing powers do not come from formal education but rather from family members, inheritance, signs, dreams, revelations, and super-natural gifts. Illness is defined as a collection of symptoms from which members of a group suffer collectively.

4) MJ del Vecchio Good. 1995. Cultural studies of biomedicine: An agenda for research. Soc. Sci. Med. Vol. 41, No. 4, pp. 461-473. MEDICINE-GLOBAL-LOCAL
This article explores a “cultural studies” approach to studying the trans-national and global world of biomedicine. Del Vecchio Good argues that biomedicine has to be analyzed at both global and local levels if we want to understand the local and international webs of knowledge, technologies, and practices. There is a constant traffic between the local and the global and between the culture of the clinic and that of international biomedical research. It is crucial to study the political economies of biotechnology and biosciences since “Local and international political economies of medical research and biotechnology shape medicine’s cultural, moral, and ethical worlds” (461). The author makes clear that when we refer to “biomedicine”, “Western medicine”, or “cosmopolitan medicine” we need to understand which are the specific local forms of medical practice and which are cosmopolitan. But not in theory, rather the local forms are constrained by local practice and political economies that resist any reified analysis of biomedicine. In fact, del Vecchio Good says, medical “ambiguity and ‘facts’ are employed in culturally specific ways, and hope is conveyed in quite different across these societies” (462). Thus, it is key to examine the assumptions about medical competence and how these assumptions are not only associated to bioethics and clinical standard of practice but also to inequalities in access to the material and symbolical capital of medical institutions. This two-way flow is remarkable since biomedicine is neither fully ‘global’ nor merely ‘local’. Del Vecchio Good says, “The flow is thus not only between local cultures and institutions that create medical knowledge and organize practice, ethics, and the medical market, but also between the culture and market of international/cosmopolitan biomedicine and its local variants” 463). She creates the term ‘clinical narratives’, which are stories produced by physicians for and with patients over time and which are about the progression of therapeutic action and the course of disease. This notion is similar to Mattingly’s ‘therapeutic emplotment’ that descibe how professionals create therapeutic experiences for patients through the process of storytelling. Physicians are central to these narratives since they imfluence them, and also since they are readers of the stories of their patients and the cultural flow from the biosciences as competente experts. She takes the field of Oncology and she finds the cultural assumptions that patients have the right “to know” and “to decide” and professionals have the obligation to “install hope” on their patients. Whereas in Japan and Italy the kinds of relations between oncologists and patients are strikingly different in terms of knowledge, patients rights, and professional obligations. In North America, clinical narratives are mixed metaphors and messages about time, statistics, and uncertainty. When considering the international biotechnological influence on the culture of the local clinics one sees the market pressures and the attempts to change physician’s prescribing practices rather than concern on quality clinical medicine. This transnational powerful influence produces deep ethical conflicts to physicians and policy makers.     

5) Sontag, Susan. 1990. Illness as metaphor: and, AIDS and its metaphors. New York: Doubleday. MEDICINE
Sontag wrote this book during her own experience with breast cancer and she challenged the “blame the victim” mentality behind the language society often employs to portray diseases and those who suffer from them. She noticed that the cultural myths surrounding cancer negatively impacted her as a patient. Broadening the parallels between public perspectives on cancer (the paradigmatic disease of the twentieth century), and tuberculosis (the symbolic illness of the nineteenth century), Sontag demonstrates how both illnesses have become connected with personal psychological qualities. In particular she shows how the metaphors and expressions used to illustrate both illnesses lead to an association between repressed and introverted passion and the physical illness itself. She notes the strange turnaround that “With the modern diseases (once TB, now cancer) the romantic idea that the disease expresses the character is invariably extended to assert that the character causes the disease, because it has not expressed itself. Passion moves inward, striking and blighting the deepest cellular recesses” (46). Susan Sontag’s analysis of illness as metaphor shows us the romantic notions regarding the character of TB patients in nineteenth century Europe and the ambivalence with which such patients were viewed. While elite discourses on tuberculosis might have been influenced by such notions of the relation between tuberculosis, melancholia and artistic creativity (especially in literature and film), in the everyday life of communities the stigma of tuberculosis exposes the patient to dire risks from the way that the biomedical system(s) and the institutions of the state act toward those who have suffered from the disease. She finds that the metaphors that we relate with disease contribute not only to stigmatizing the disease, but also to stigmatizing those who are ill; it is a parallel process. She even suggests that the disruptions of metaphors and myths ultimately cause more suffering than the diseases themselves; Sontag states “The metaphors and myths, I was convinced, kill” (99). Sontag compels the reader to think critically about preconceptions and metaphor in relation to illness, especially the reader’s own moral judgments. Sontag categorically concludes, “We are not being invaded. The body is not a battlefield. The ill are neither unavoidable casualties nor the enemy” (182-3).

6) Latour, Bruno. 1988. The Pasteurization of France. Translated by Alan Sheridan and John Law. Cambridge, MA and London: Harvard University Press. MEDICINE-SOCIETY
This is a story of a man, his time, and his society. A central question is: Was Pasteur on his own capable to prevent people from spitting, convince them to build sewers, affect them to suffer vaccination? Pasteur’s accomplishment depended upon a whole network of forces, including the public hygiene movement, the medical profession, and colonial powers. It is the action of these forces, combined with Pasteur’s skills, which Bruno Latour analyzes as a chief example of science in action. Latour argues that the success of the biologist and his methods must be understood within the exact historical junction of opposite social forces and contradictory interests. At that time Pasteur was not the only scientist working on the interactions between microbes and disease. But how was he able to incite the other forces to support his own research? Latour demonstrates Pasteur’s attempts to gain support from the French public: the farmers, industrialists, politicians, journalists, and much of the scientific establishment. Latour redefines the context and instead of narrowing science to a given social environment he attempts to demonstrate the co-construction of a society and its scientific facts - society and science are co-constructed. Latour analyzes the history from different angles beyond the boundaries of the established disciplines of sociology, history, and the philosophy of science. Ultimately, Latour is retelling the story of a scientific enterprise rethinking what “science” does. He says, “‘Science’ –in quotation marks- does not exist. It is the name that has been pasted onto certain section of certain networks, associations that are so sparse and fragile that they would have escaped attention altogether if everything had not been attributed to them” (216).

7) Farmer, Paul. 2003. Pathologies of Power. Berkeley: University of California Press. Ch. 9: “Rethinking Health and Human Rights. Time for a Paradigm Shift” HR-SOCIETY
In this chapter, Paul Farmer is trying to show how the definition of human rights (HR) is open to contestation and discussion when considering it in a narrow or wide way. He takes the case of Russian prisoners in the attested prisons after the collapse of the USSR in which prisoners (under illegal long pre-trial detentions) are dying of TB in spite of having access to medication. Farmer shows that many social, economic and legal factors are interplaying to produce this sickly situation for the prisoners. Prisoners are first held in overcrowded jails, then in TB colonies, and are receiving old medication that does not do anything to the resistant type of TB they are experiencing. So for Farmer, HR should be considered as economic and social rights. Prisoners in Russia in TB colonies, having developed multidrug-resistant tuberculosis (MDRTB) are untreatable in such conditions. But many international HR organizations of wealthy donor nations using the logic of cost-effectiveness say they cannot give the right medication (not resistant) because they are too expensive for developing countries. But this argument of cost-effectiveness fails to consider that the majority of the drugs used in the treatment are old and therefore off-patented. Farmer shows that in poor countries such as Peru or Haiti MDRTB can indeed be cured. He also highlights that public health and access to medical care are social and economic rights. In other words, in order to understand violence inflicted over individuals we need to consider the deep-rooted structural violence that caused it and its relation with HR. According to Farmer, we need to develop a pragmatic solidarity. One problem I see, that Farmer is very aware of, is the divergence between HR discourses and declarations at the international and national levels of juridical system and the real experiences in which people live and the facts they face on everyday basis. If HR are not seen narrowly, if they are seen as economic and social rights, the contradiction between HR discourse and real life is even more pronounced. So inequalities in health are difficult to reconcile because the same state that violates social, economic, and civil rights creating wider inequalities is eager to cover these same violations. Many HR organizations are also very tied to economic, social and state powers. So the “pragmatic solidarity” is not only to denounce these violations but also to actually help the sufferers moving beyond the “blaming the victim” discourse. There is a need for moving beyond the analysis to find useful strategies for the poor and those in need. It is to move from “who did what to whom, and when?” to “what is to be done?” Farmer suggests that in order to find strategies that would really work they need to create a new agenda of health and human rights, and make health and healing the symbolic core of the agenda. So in a way it is to “medicalize the human rights” and Farmer considers this because he has seen that it is possible; for instance, with the Russian prisoners when the debate started to be a medical debate and not a legal or prison reform debate, the situation for the prisoners, the need to control the epidemic and to cure the prisoners started to change. In doing so, the sick and abused needed to be heard and be part of the solutions. Finally, I think one important issue is to re-consider the role of the states that legitimate growing inequalities and are urged to do more but at the same time are dispossessed (or portraying they are) of the means to alleviate these inequalities, basically the social and economic rights of the poor. Overall, I think that this chapter is showing the contradictions that HR organizations and researchers/activists have when trying to help to reduce the social inequalities. They are working within the frame of the state but trying to criticize and resolve some of the damage produced by the same state. So I agree with Farmer that we need to move beyond a narrow consideration of HR to a broader one in which economic and social rights of the poor are included. A pragmatic strategy is needed if one wants not to reproduce what is not working and to find solutions that work for the people who need them. Sometimes considering "the poor" as a category seems over-simplified but I do see his approach, with his long experience in the field, as valuable and worth thinking about.

8) Good, Byron. 1994. Medicine, Rationality and Experience: An Anthropological Perspective (Lewis Henry Morgan Lectures). Cambridge: Cambridge University Press. MEDICINE-ANTH
Medical anthropology as an inheritor of colonial knowledge-power has been criticized from within and without over the types of cultural representations the discipline has created when portraying “the Other.” The anthropological analysis has shown that western biomedicine is one medical system among others in competition. It has also criticized the medical profession’s Enlightenment assertion that lack of knowledge and maladaptation are the causes of illness. One problem in medical anthropology as sub-discipline is that often anthropologists are at once critics and committed participants of the heterogeneous biomedical enterprise. One central question in this regard for Good, which I consider important also, is how we situate our analysis of cultural representations of illness, “encoded in popular or folk therapeutic traditions or in individual understandings and practices, in relation to the truth claims of biomedicine” (28). How we consider the authority of biomedical science is key understand to how we relate as anthropologists with those with whom we work. Good asks to what extent “disease” is different from “illness”? But I ask myself, using the distinction disease (biological), illness (personal) and sickness (social) aren’t we taking for granted the biomedical notions of body and causality that put first the biological causation and then the non-biological? The current debates concerning illness representations show four schools of thoughts: the empiricist tradition, the cognitive approach, the interpretative approach and the “critical” medical approach. The first approach was centered in understanding “cultural beliefs” in relation with illness, to modify “irrational (sick) behavior” and to decrease risk factors and obey medical treatments. They just considered “culture” as “belief”. There was a profound separation between folk beliefs and biomedical scientific knowledge (knowledge would eventually correct inappropriate popular beliefs). The second approach was more centered in cognitive processes, the ethnotheories of illness and health. These studies tried to understand particular cultural segments of people’s lives in relation with ways of dealing/comprehending diagnosis, treatment and prognosis in specific cultural ways. But again, illness representations were understood in mentalistic terms detached from “embodied knowledge”, affect, and socio-historical forces that shape illness meanings. The third approach, the meaning-centered tradition considers the biomedical system as a cultural system. They put the relation between culture and illness as the core of the analysis but in a different way, they consider disease not as an entity but as an explanatory model. The fourth approach, the “critical” applied medical anthropology, tries to grasp the political and economical forces that shape illness experience and influence biomedicine itself. So for instance, forms of suffering developed from class relations may be defined as illness, medicalized, “constructed as dehistoricized objects-in-themselves” (57). Therefore, hunger or poverty are often medicalized and individualized when the social causes of them are invisibilized and unproblematized. Thus central in this approach is a critical unmasking of the social fabric of these conditions and the dominant interests. But the biomedical enterprise is more complex, it’s a site of hope and despair, desire and hatred, it is a right and an obligation, so the human actions in relation to its power deserve a deep understanding, especially if we want to produce knowledge and actions that would democratize its access and reduce its abuses of power. I agree with Good that medical anthropologists are in-between this field of great tensions, they analyze and participate at the same time in the phenomenon they try to understand. It is not only this idea of dual-loyalty (to biomedicine and to patients/family/social circle) that is at the center of medical anthropology practice, but also the possibility of co-construction of the anthropological knowledge/practice.

9) Lupton, Deborah. 2003. Medicine as culture: illness, disease and the body in western societies. London: Sage. MEDICINE
Lupton’s book is a socio-cultural study of health, illness and medicine. Her analysis is based on the sociology of health and illness, medical anthropology, history, cultural studies, and discourse analysis. Throughout the chapters Lupton includes topics such as gender, cleanliness, commodification, food, inequality, discipline and agency, and death, among others. She highlights the strengths and weaknesses of different perspectives in the examination of power relations, experiences and lay and professional representations of health, illness and medicine. In regards to power she finds that “Power in the medical encounter may be a productive and oppressive; both patients and doctors have expectations and needs related to the encounter which may at times demand that the doctor take an authoritative stance. While there is a limited scope for patients’ resistance, to challenge this authority calls into question the whole nature and rationale of the medical encounter” (141). Lupton considers that in general people do not necessarily come to the doctor-patient encounter “as empty vessels passively awaiting the wisdom of the doctor” (108). However, Lupton avoids dealing with certain crucial topics in regards to medicine as culture; she does not look at biomedical-pharmacological research and medical education, key facets of medicine as culture, which are only succinctly mentioned. Indeed, in spite of the title, medicine itself is only one theme running through this book, which is in essence a general examination of health and illness as subjects of social scientific study.

10) Mattingly, Cheryl, and Linda C. Garro. 2000. Narrative and the Cultural Construction of Illness and Healing. Berkeley: University of California Press. NARRATIVES
According to Mattingly and Garro, narrative is an essential method of giving meaning to experience; it is applied to comprehend distinct events that involve connecting “the inner world of thought-feeling to the outer world of observable actions and states of affairs” (1). It is related to the basic human capacity to give meaning and create sense from experience, and thus exploring narratives as a theoretical construct provides a broader context to experience since creating a narrative requires manifold personal and cultural resources. Narratives have a communicative capacity due to the need of the audience to search for meaning among possible interpretations. Narratives create a relationship between a certain narrative form, narrative as performance, and referential content. The concept of narrative is closely tied to time. In literary theory, narrative refers to the means by which a story is represented discursively; it implies an aesthetic adaptation of sequential time, in order to create a persuasive plot. In this sense, narrative is always a deformation and reformulation of the events narrated. Consequently, narratives are also performative, thus narrative shapes experience. Narratives frequently reflect socio-cultural and professional relationships, and therefore can be associated with theories of practice and learning. Specifically, in the medical context, this triggers questions about how individuals gain narrative skills and the cultures in which they are embedded. It is particularly relevant how we construct the self from a narrative point of view, as stories of illness are told out of a wounded body. In this sense, we should reflect on the position of the ethnographer in the production of stories, and to our own roles as narrators of narrative meaning.

B. Anthropology of the Body, Emotions, and Subject Formation
11) Mauss, Marcel. 1973 (1934). Techniques of the Body. Economy and Society 2(1): 70-88, February 1973 BODY
This is the first work that presents the notion of habitus. For Mauss, habitus means a particular social way of acting and not just mere individual, psychological or biological behaviors. The author points out the importance of education within one particular culture as a way to transmit manners of using the own body; techniques and apprenticeships are embodied and learnt through the body. Mauss reflects on the body and considers that it is important to “move from the concrete to the abstract” (71) to observe the manifold ways it is physio-psycho-sociologically educated to do certain things. Mauss is the first to coin the concept of “habitus”, which for him refers to “techniques and work of collective and individual practical reason rather than, in the ordinary way, merely the soul and its repetitive faculties” (73). Mauss here is dealing with “techniques of the body” that occur before any instrumentalization of the body, which is constantly adapting through “a series of assembled actions, and assembled for the individual not by himself (sic) alone but by all his education, by the whole society to which he belongs, in the place he occupies in it” (76). These techniques vary depending age and sex, and are based on efficiency and tradition. Mauss defines four major techniques of the body depending biographic periods: birth and obstetrics, infancy, adolescence, and adult life, and according to movement or rest.                          

12) Regazzoni, Carlos J. 2008. Enfermerar y Curar en Democracia: Los Determinantes Sociales de la Salud en la Argentina. Buenos Aires: Editorial Céfiro. MEDICINE-SOCIETY
This is a book written in plain Spanish, perhaps with an overt simplified pedagogic mode, by a doctor-researcher who tries to analyze the health care system in Argentina. According to Regazzoni the Argentine health care system is largely inefficient; he says “The system in the current situation ruin the lives of many. And the Argentine health has no cure if deep changes are not made in its system” (102). He cites a World Bank report in which it states that the greatest proportion of illnesses are not transmissible, similarly to developed countries; the national health expenditure is high; the offer of services is wide; and the health sector has high technological development. Regazzoni asks, “Why this system does not work properly?” He analyzes the health system according to three factors: users, human resources, and administrative system. The types of prevailing illnesses are heart diseases, stroke, maternal mortality, tumors, respiratory diseases, car accidents, and infections like diarrhea and hepatitis; these conditions are caused by poverty, working conditions (or unemployment), education, infrastructure, and eating habits. Half of the population does not have any medical coverage, therefore, either they use public hospitals or they pay from their own pockets for medical services. 45% of all mortality rates are caused by poverty, maternal health and pregnancy. But the health problem in Argentina has its epicenter in the Province of Buenos Aires where one of three Argentines lives, particularly in the greater Buenos Aires Area that surrounds the city of Buenos Aires where one of four Argentines lives. In this area the trend is that the majority are poor, with lower levels of education, higher levels of unemployment or working under the table, and with lack of social benefits. Another characteristic of the health care system is that Argentina, according to WHO standards, has five times more doctors than necessary and twenty times less nurses than what is needed. The Province of Buenos Aires lack of beds for hospitalization, and the quality of its hospitals are generally bad, so inhabitants of the province go to the City of Buenos Aires where the quality is better and this creates a tremendous pressure on the health care system. When facing a health problem, people have three basic options: do nothing, go to the collapsed public system, or pay from their own pocket. Half of the health expenditure in Argentina comes from the private sector, that is, it comes directly from the citizens in context of extreme poverty and unemployment. Therefore, the wealthier the patient the better the quality of health service received; and this is part of the social inequalities. Regazzoni says, “Each time that the poor has to collect money among family members, friends, and neighbors for buying a medicine or conducting a test, in this same measure society would fail to redistribute its resources. In our country this failure is no less than 50%” (122). Half of the children under the age 4 in the Province of Buenos Aires do not have any medical coverage.    

13) Scheper-Hughes, Nancy, and Margaret M. Lock. 1987. The Mindful Body: A Prolegomenon to Future Work in Medical Anthropology. Medical Anthropology Quarterly 1(1):6-41.   BODY
In this programmatic article, Scheper-Hughes and Lock presented a clear set of ideas of what should be implemented in anthropology in relation to the study of the body. Their proposition of three bodies, individual (lived experience of the body-self), social (representational uses of the body as a social symbol), and political (regulation, surveillance and control of bodies [individual and collective] in reproduction and of deviance and human difference), in their relation with health and illness has been highly influential but hard to follow. It seems that their over-encompassing perspective is clear and well accepted within anthropology; the problem is how to put it in practice. However, this was a starting point, and they tried to propose new forms of dealing with the body from multiple-perspectives. The reflections on this “mindful-body”, presented in many different ways, and ultimately even inside the medical model, are signs of overcoming and re-consideration of the Cartesian separation between body and mind. For the authors, sickness is not a secluded event; it is a sign and spot in a communication process where “nature, society and culture speak simultaneously.” And because of this, “the individual body should be seen as the most immediate, the proximate terrain where social truths and social contradictions are played out, as well as a locus of personal and social resistance, creativity and struggle” (31).

14) Bourdieu, Pierre. 1989. The Logic of Practice. Cambridge: Polity.   BODY
Following a similar path to Mauss’ “techniques of the body”, but taking one step forward, Pierre Bourdieu develops a theory of practice concentrated in bringing together the seemingly opposed “structure” and “agency” into the dynamic social fabric through the concepts of habitus and embodiment. This work and others from Bourdieu are clearly characterized by his attempt to transcend a series of oppositions, which distinguished the social sciences (freedom/determinism, subjectivism/objectivism, micro/macro, permanent/impermanent, physical knowledge/practical sense). In particular, he did this through highly remarkable conceptual innovations. In this line, his concept of habitus was elaborated with the purpose to overcome such oppositions. Bourdieu’s main effort was to put body and practices in the center of his analysis. For him, social agents are neither completely caged by the social structures nor absolutely free from them; on the contrary, they develop strategies, which are tailored to the needs of the social worlds that they inhabit. These strategies are unconscious, and act on the level of a bodily logic, thus they are a practical sense.

15) Grosz, Elizabeth. 1994. Volatile Bodies: Towards a Corporeal Feminism. Bloomington: Indiana University Press. BODY
In this book, Grosz proposes a radical departure from previous dualist or even monist philosophies and theories of the “body” and “mind”. She centers her philosophical and political analysis in the corporeality. For Grosz, it is urgent to refocus on bodies in accounts of subjectivity; indeed, “All the effects of depth and interiority can be explained in terms of the inscriptions and transformations of the subject’s corporeal surface” (vii). Subjectivity should not be conceived neither in terms of depth or latency, but of a changing surface against the colonization of the body by biology and medicine. In fact, “Bodies are not inert; they function interactively and productively. They act and react. They generate what is new, surprising, unpredictable” (xi). Following Lacan, Grosz proposes a model using the image of the Möbius strip. In contrast with dualist and monist theories, bodies and minds are not different substances or two types of attributes of the same substance, but something in between these two options. She suggests, “The Möbius strip has the advantage of showing the inflection of mind into body and body into mind, the ways in which, through a kind of twisting or inversion, one side becomes another” (xii). This is because vectors or uncontrollable drifts traverse the inside into the outside and the outside into the inside. These constant movements of the subject, this psychical interior and corporeal exterior, are what produce the bodies. Indeed, “there are only bodies –male or female, black, brown, white, large or small- and the gradations in between” (19).  

16) Young, Katherine. 1997. Presence in the Flesh: The Body in Medicine. Cambridge: Harvard University Press. MEDICINE-BODY
Ketherine Young (1997) in Presence in the Flesh argues that it is crucial to understand the process in which a body becomes a medical object, and how health professionals need to get access to a corporeality that is seen as Other. Medical gaze for Faucoult is an “intellectual eye”. For Young, the body under the medical gaze became a new discrete object. Death is the moment in time and space in which the body-as-object is definitively separated from the body-as-self. But death occurs differently in different parts of the body. The corpse for Young portends a presence, which is also an absence. 
Young’s direct encounters with medical practice helps her to understand the different ways in which the unity of physical and lived bodies is altered in the course of medical practice. Young is a phenomenologically-oriented anthropologist and physician that has a dual task, she is part of this practice and writes about it. Young writes about internal medicine, gynecology, surgery, and pathology. She focuses on the various structures and frontiers (waiting rooms, beds, surgery rooms, offices, desks, tables, chairs, etc.) through which the body is instructed and located as a medical object, namely, how the makeover of self into object, or person into patient, is spatially arranged in the medical practice. She meticulously describes the transformation that occurs when a subject enters into a waiting room, where he or she gives her or his name to a receptionist (a “guardian” of the realm of medicine [p. 13]). Each movement in which the subject is located is followed by certain spatial attributes. The self within the realm of medicine is spoken as a self “sealed inside a story” (33). During the history-taking that goes before the concrete physical examination, patients are oriented towards two basic changes with respect to their own bodies: the history-taking provokes them to look at their bodies from outside rather than inside, and to see their bodies in parts rather than as a whole. Young’s own descriptions are indeed narratives of encounters with various different corpses. She relies on Bakhtin’s characterization of the body as grotesque and carnivalesque as an essential part of the dead bodies that represent a discourse about the nature of death. Young ends her Preface with the question “Where am I?” She speaks in the Preface of how she sometimes “announce[s] my bodily presence in the scene as ethnographer,” of how she often “become[s] palpable as perceiver, as when I filter the patient’s experiences through my own sensibilities,” and of how “elsewhere, . . . I vanish” (xii). Her own presence and absence is therefore part of Presence in the Flesh: the self-as-writer is also self-as-character. She indicates her position when she states, “In subjective writing, perspective on what happens is internal from within the body of a character who happens to be myself” (155). “Writing the body” is a narrative problem for the ethnographer that is a “character within” and the one that “writes about”, but the key problem is the ethnographic relationships with Others. For Young, “The root puzzle in ethnographic writing is how to get access to the Other” (137). Young considers that “It might be argued that . . . the objective, the subjective, and the intersubjective, produce different, though not necessarily incommensurable, perspectives on the Other” (171). In fact, “The root problem in ethnographic writing is not getting access to the Other but so constituting the category of the Other that getting access is problematic” (171). That is, as long as other minds/selves are considered to be “secreted in the body” (170), ethnographic access will always be not possible. Thus, Young makes the body the site of all relationships, those between ethnographer and Other, between ethnographer and reader, as well as those specific to personhood with its division into body and self. “The nexus of subjectivity and objectivity in the body evidences their inextricability. Here the self is materialized; the body is inspirited” (171). One of Young’s major concluding points is that while “the body of the Other” is commonly said to hide a self, “[i]n reality, the body of the Other reveals a self” (171). Thus, reaffirming themselves as persons into the practice of medicine.

17) Csordas, Thomas J. 1990. “Embodiment as a Paradigm for Anthropology.” Ethos 18(1): 5-47. BODY
Csordas focuses on a theory of practice that can be grounded in the socially informed body. He argues that embodiment represents a notion (and paradigm) to overcome the body-mind, subject-object Cartesian divisions. It is only out of the body that experience is possible, which then becomes experience of the body. To build up his paradigm of embodiment Csordas merges two lines of thought that seem to be in opposition; that of theory of practice (following Bourdieu) and phenomenology (following Merleau-Ponty). Csordas integrates domains of perception, practice, and religious practice for examining Christian charismatic Church phenomenon of spirit possession, glosolalia and spiritual union with the divinity. He draws on Merleau-Ponty’s notion of perception as a pre-objective, generative process to comprehend how something that was usually understood as “superstition” can be observed as “real”. Indeed, Csordas questions the notions of “reality” and “objectivity” completely and he centers his analysis on what constitutes perception (and self-perception). Using his own conception of phenomenology the author understands perception as an embodied capacity shaped by culture but not as a result of a universal cause. Csordas locates reason as an outcome of perception, which holds the potentiality of multiple forms of objectification. Following Bourdieu he uses the notion of habit to suggest that these objects labeled through perception do not just produce a common external world but the social structure of it. From the constant recreation of body’s activity the social structure is produced. But people’s perception, practice, and religious practice are not mere responses, they are not just a “reaction” and they are not clearly “resistance” either. Indeed, this is not an out of the ordinary movement but rather an opening to the potential in another dimension.

18) Scarry, Elaine. 1987. The Body in Pain: The Making and Unmaking of the World. New York: Oxford University Press. BODY-PAIN-LANGUAGE
This is a book that addresses human pain experience in three ways, in terms of: the difficulty of expressing bodily pain, the political and perceptual struggles that arise from that difficulty, and the quality of the material and verbal expression of those painful experiences. There are several ways in which experience of pain are organized and institutionalized, made visible or invisible. Scarry claims that physical pain is inexpressible, that is, it cannot be shared; “pain comes unsharably into our midst as at once that which cannot be denied and that which cannot be confirmed” (4). Scarry is concerned with language, not only in its denotative function but in the way pain resists, and ultimately obliterates, the ability to express and communicate. People suffer pain for many different reasons (torture, illness, accident, etc.), they do so in different settings (home, hospital, or torture room), and in spite of the root of their suffering, the person in great pain experiences his or her own body as the agent and perpetrator of his or her agony. According to Scarry, the constant, self-proclaiming sign of the body in pain holds not only the message “my body hurts,” but also the certainty that “my body hurts me.” Here body-as-object-in-pain is indistinguishable from body-as-self (as simultaneously a weapon and a wound). For Scarry there is out-there sharable world that the body-in-pain cannot access, since “physical pain–unlike any other state of consciousness–has no referential content. It is not of or for anything” (5). I think that what Scarry is trying to say is that physical pain is an affect that operates prior to personal conceptualization. She says “It is precisely because it takes no object that it, more than any other phenomenon, resists objectification in language” (5). Although I agree that pain can “cause a reversion to the pre-language of cries and groans” (6), this should not imply that the experience of pain cannot be somehow made expressible nor that pain is always experienced in the same way without social, class, gender, ethnic, able-bodiedness differences. Scarry suggests that because pain is a private and inexpressible experience other venues help to take it into the realm of public discourse. One is medicine; doctors need to hear the “fragmentary language of pain, coax it into clarity, and interpret it” (6), although health professionals often see patients as “unreliable narrators” of their own pains that must be bypassed in order to gain access to the physical events themselves. Diagnostic tools have been developed to produce external images of (painful) interior events, images of “burning”, “pressing”, “pulsing”, and “shooting” can aid health professionals to interpret thermal, spatial and temporal aspects of patient’s painful experience. Other venues are torture, the letters from tortured people, courthouses, and artistic expressions. A central concern for Scarry is the parallel between the difficulty to verbally represent and to politically represent pain and the language of agency. 

19) Douglas, Mary. 1966. Purity and Danger: An Analysis of the Concept of Pollution and Taboo. London: Routledge and Kegan Paul.  SOCIETY
This book has become a classic in the anthropological study of religion and symbolism. This is one of Douglas’ earliest work in which she attempts to clarify Leviticus’ Abominations, particularly the taboo to eat pork. She does not agree with “rationalistic” or “materialistic” explanations that suggested that the taboo was caused by pig’s hygienic habits or unhealthy meat. Douglas finds that pigs were forbidden because they did not fit on the classificatory schemes of Jewish society. Pigs represented a classificatory anomaly and, therefore, they should have been considered as taboo. Classification represents an imposed consensus; the more those classificatory schemes are shared the more the social control, and vice versa. The centrality of the social classifications is that they represent the insight of an order, which cannot go against the social order. The object of the taboo is what deviates from the prototypes. This book has very good ideas and challenging suggestions, but the problem with Mary Douglas is how she thinks what she thinks and how she demonstrates her rationale and her methods. She concludes with plausible notions, based on hints and on fitting examples, but she does not develop a rigorous demonstration.

20) Rosaldo, Renato. 1993 (1989). Introduction: Grief and a Headhunter’s Rage. In Culture and Truth: The Remaking of Social Analysis. London: Routledge.   EMOTION
The Ilongot of Philippines encompass grief, rage and headhunting as part of their emotional force of death. Rosaldo applies Bourdieu’s notion of the “positioned subject” to the methodological question of how the cross-cultural study of emotion should be carried on. Each person is seen as occupying a certain position within society, which sustains a particular point of view. Therefore, to understand the other’s emotions, requires that the ethnographer has shared the basic life experiences that evoke those feeling, such as a death of one’s child or one’s partner. From this perspective, adequately understanding other’s emotions is impossible via cognitive means; verbal explanation cannot gain access to the core of the emotion to which one is admitted only by having lived a personal experience. To understand others’ emotional lives requires a sympathetic path; “One must consider the subject’s positions within a field of social relations in order to grasp one’s emotional experience” (1993: 2). Ilongot people evoke feelings of bereavement, rage, and the impulse to headhunt when someone dies, and this is part of a practical matter: how to live with the emotional force of bereavement. Both formal rituals of death and everyday emotional (re)actions of bereavement are two poles that provide critical insight. Therefore, the typical young age of the ethnographer is a problem in the cross-cultural investigation of emotional forces such as grief, rage, and bereavement to the extent that limited life experience makes the ethnographer often incapable of the insight necessary to ponder the depth of others’ emotions, especially of devastating loss. Indeed, his/her life experience both permits and prevents particular kinds of insight. The ethnographer should be aware that “its objects of analysis are also analyzing subjects who critically interrogate ethnographers –their writings, their ethics, and their politics” (1993: 21).

C. Illness and Society
21) Diego Armus. 2003. Tango, Gender, and Tuberculosis in Buenos Aires, 1900-1940. In Diego Armus (ed.), Disease in the History of Modern Latin America. Durham: Duke University Press.MEDICINE-SOCIETY
In Argentina, between 1870 and 1950 tuberculosis was one of the main causes of death (though still currently prevalent in marginal populations such as indigenous people). Armus focuses on three lines that collided in the first half of 20th century Buenos Aires. He follows the development of Tango, of gender relations, and the growth of Tuberculosis in order to show not only how they were entangled but how one was used to think the other. For instance, when waves of immigrants came to Buenos Aires, a city that in 1930 had almost 2.5M people, the relationship between the elites and the newcomers was in many aspects very tense, thus, it was portrayed in the media and in Tango lyrics. Tensions between the center and the neighborhoods of the city (one of the key spaces of social integration and Argentinization according to Armus, and still important today) started to arise when the elites felt threatened by the mass of immigrants slowly but steadily enclosing the center. In this context, metaphorical associations connected TB as a romantic disease of refined and sensible people with gender anxieties. Anxieties that were showing signs of a society with a relatively high social mobility, in which the barrio “becomes the emotional geography of the poor” (106), but in which women were sanctioned for their movement from the barrio to the center. TB was imagined as a disease of excess (of passions, consumption) in a context in which people were over exploited and worked in very poor working conditions. Ultimately, comparing the milonguita with costurerita provides Armus with a powerful approach to gender and power issues in the formation of the Argentina “multicultural” nation because it helps to show male fears and the struggles that men and women had when they tried to achieve social mobility within the Argentinean society.

22) Green, Linda. 1999. Fear as a Way of Life. Mayan Widows in Rural Guatemala. New York: Columbia University Press. SOCIETY-BODY
In this book, Green tries to understand and represent the contradictions and (im)possibilities that Mayan widows and orphans who survived the military and guerrilla violence, especially the (para)military destruction of hundreds of rural Mayan communities, mass-massacre of at least 80,000 people (mostly men), face in their everyday life. In a constantly shifting social landscape filled and formed with violence and impunity, fear could be considered as a logical response, some sort of tactic according to Green, by which Mayan widows embody the memory of their lost husbands, cousins, parents, uncles, brothers and (re)create affirmative actions in their realities of suffering and oppression when now they have to become “mothers and fathers” at once. In a context of structural violence, when humiliation, fear, denial of dignity and integrity are ever present forms of micro-social processes of domination, local communities are traversed by relationships of victim-witness-victimizer between neighbors and even family members are shaping the intricate forms of political and micro-social violence. And fear, when it becomes chronic, when inscribed in the body and the collective imagination, when it is the referee of power, grows and grows and becomes a way of life: a meta-narrative of people living in a constant macro and micro “state of exception” when injustice is the rule. This endless state of violence cannot and should not be taken in any abstract way; these are specific forms of fear and (in)visible violence which concretely traversed people’s lives in this capitalist neo-colonial Guatemala, with a huge portion of violence produced by the same state. Green criticizes certain assumptions within anthropology, particularly how embodiment and the body are taken for granted in many theorizations when trying to understand everyday forms of violence. For Green, an analysis of the relation between violence and embodiment clearly shows the incapacity to split experience and cultural representation, and also reveals how power, gender and history work via “embodied subjectivity” and “concrete bodily activity.” Green considers that the body “is both a sociological and historical phenomenon, and knowledge is gained though the senses and sensory immersion in the natural and supernatural world” (114). What these women had, felt, and experienced was connected with their emotional memory and bodily pain, their ill conditions had an obvious political causation. When the women were meeting together and discussing their common condition, certain forms of community of pain and healing were being developed. For Green, calling their suffering an illness had powerful results, “[it] created spaces for struggle while giving bodily shape to the image the women have of themselves as widows. Memory and pain served as a source for regenerating community and identity and for political consciousness” (117). The body in “itself” was the center of political demonstration, since women’s bodies were indeed the physical representation of the violence against the Maya population.

23) Briggs, Charles. 2003. Stories in the Time of Cholera: Racial Profiling During a Medical Nightmare. Berkeley: University of Berkeley Press. MEDICINE-SOCIETY
This book is about social imaginary and social inequality. It is also about the modern projects of creating different kinds of citizens. For Briggs, the creation of denigrating images and their circulation and consumption shapes public perceptions and the creation of public policy. He situates these tensions between the social production of sanitary citizens (capable of understanding modern medicine and providing self-care) and unsanitary subjects (inept to self-care and/or understand medicine) such as the Warao indigenous people in Venezuela in the struggle for appropriating or denying basic social and political rights. Briggs considers that the associations between Cholera and poverty and cultural differences facilitate the legitimacy of social inequality in each place. Thus, to think about disease and inequality without blaming the other creates the need for practicing health and social sciences on the “basis of a shared sense of responsibility and justice” (xviii). Like Chagas, Cholera is considered a “disease of poverty”, in which certain forms of “orientalism” produce associations with pre-modernity and superstitions, although many epidemiologists think it is indeed a modern disease. For instance, if one considers that national states in Latin America have been attacked by, and shaped their practices because of, international monetary organizations such as IMF or World Bank in the 1980s and 1990s (and earlier, in the 1970s, lending money to dictatorships) and the involvement of US and other rich nations in Latin America supporting military governments, one could conclude that these other forces have “modernized” (in a narrow sense of producing more and more unsanitary subjects and less and less sanitary citizens) and helped to produce the conditions that create Cholera. Another problem is the creation of images of dirtiness and primitiveness of these other people that lack hygiene and “modern habits”. There was a big contrast, according to Briggs, between the medical personnel in situ trying to keep indigenous and criollos alive, and the governmental anti-cholera campaign that was hegemonizing the information and were portraying the general image that the situation was under control. In these circumstances, a general racialization of death as “local” (Cholera was always there) and “natural” (for the indigenous people) phenomenon was produced using narratives of modernity, science and hygiene (or lack of). For Briggs, a process of racializing and spatializing Cholera was developed although it contradicts itself when not only indigenous people, but also criollos, became affected. But the media rarely criticized the official discourse in relation to Cholera, and when they did so, by creating what Briggs calls “intertextual gap” and criticized the government, they implicitly assumed the rhetoric that racialized and spatialized Cholera. Moreover, both physicians and media believed that indigenous people were incapable of understanding biomedical concepts or appropriating of hygienic practices according to their own perspective. The ultimate effect of the governmental and media message was a meta-communicative message: “if you die it is your fault”. Ultimately, the Cholera crisis deepened the social and racial inequalities of the region.

24) Biehl, Joao. 2008. Will to Live. AIDS Therapies and the Political of Survival. Princeton/Oxford: Princeton University Press. MEDICINE-SOCIETY
AIDS in Brazil is a particular case of state formation, civil activism, political rights and access to health. In many cases NGO activism combined with state policy-making. With the emphasis on treatment access instead of prevention, according to Biehl, “political rights have moved toward biologically based rights” (10). Brazilian State’s central role in reaching a wider population of people experiencing AIDS (33% of its total population have free public treatment provided by the state) was performed thanks to what Biehl calls the “pharmaceuticalization of public health”. This phrase means the creation of state responses sometimes contradicts the global political economy of pharmaceutics and their drug monopoly, a pharmaceutizalization of governance and citizenship. Brazil broke the patent of an AIDS drug and started to import a generic one from India. However, marginalized underclass people, even in Brazil, are not taken care of and they have to make large efforts to receive treatment. The book is centered in both macro (state and pharmaceuticals) and micro-levels (an NGO in Salvador) of analysis. It also focuses on a two-phased fieldwork in 1997 and 2001 which helped Biehl to re-consider the trajectories and struggles people experiencing AIDS had, especially people that left the NGO and were not considered for treatment because they were seen as homeless people who could not assure their willingness to follow the treatment. But as Biehl shows, these people also had the will to live and their personal stories show that. The interconnections among AIDS, pharmaceuticals, global health initiatives, the state, social inequalities, social experience, and subjectivity were central to understand what is going on in the crossroads between medicine, political activism, public health, state policy, science, charity and homelessness. But this is an open-ended story because big pharmaceutical companies are constantly lobbying in order to not lose their monopolist rights, and the Brazilian state under Lula’s government has moved in a slightly different direction jeopardizing some of the state sovereignty in terms of biological and pharmaceuticals governance. Although in 2007 the state made the movement to start buying generic forms of AIDS drugs from India. The state still has a different standard for black or non-black population not only in regards to AIDS but also in relation to public allocation of resources.

D. Palliative Care
25) Lawton, Julia. 2000. The Dying Process: Patients’ Experiences of Palliative Care. London: Routledge. DEATH-PC
Lawton analyzes pocesses closely tied with the desintegration of the self within palliative care. Lawton conducted ethnographic research in a Palliative Care unit in the UK with adult patients where she noticed the clash between palliative narratives of empowerment, autonomy, and patient decion-making, and on the other hand, patient’s bodily deterioration on their sense of self. The palliative goal of a “good death” and the ideology/mantra “to live until they die” is questioned by the desintegration of the self and the disruption of the associations each particular body produces. Lawton finds spatial and temporal palliative professional strategies to dealing with the dying process. She says that the day care unit is a space for masking deterioration and dependency while at the same time professionals develop a “time conspiracy” in which they negate future-orientated time and deny death. In fact, professionals influence (and patients are instrumental in constructing and sustaining) a present-bound temporal framework within the day care to construct an “auto-biography of the self” (68). Lawton says, “It became very clear to me that patients embraced experiences from the past with as much strength and vigour as they rejected and distanced themselves from topics alluding to the future” (68-9).  In a context such as the county children’s hospital in which I plan to conduct my research project I will not only have to look at the effects of the processes of patient’s bodily deterioration on their sense of self but also how more complicated things become when looking at children. How does the loss of autonomy that Lawton sees in the UK play out in a “developing country”, such as Argentina, where resources are scarce and families often “eat better” and have a “better life” at the hospital than at home? Given the age difference, how can we understand children’s autonomy and own sense of self while at the same time they are experiencing the end of their life?

26) Kuhl, D.R. 2002. What Dying People Want: Practical Wisdom at the End of Life. Toronto: Doubleday, Canada DEATH-PC
David Kuhl analyzes the work of professionals helping dying patients and the reactions that the latter have according to the distinct types of interactions with patients. Kuhl confronts the usual assumptions and affirms that in many cases an insensible and cold communication from the physicians creates much more suffering than the illness itself and the patient’s awareness of dying. In order to understand “what dying people want” (and to ease their suffering) Western medicine needs to focus not only at the physiological and biological levels, but also, and more importantly, at the psychological, spiritual, and social levels. Dr Kuhl addresses what dying people experience from a practical and emotional viewpoint. He talks with dying people who are aware of their conditions to understand what it really means for them to live with a terminal illness, and how they maneuver their lives with all sorts of pains. Kuhl follows a long tradition from Kübler-Ross that stresses listening to what dying people want and need. From this knowledge Kuhl builds up a series of advices and guidance with the aim of enhancing doctor/patient relationships, family meetings, and the general discussion of how to communicate and interact with dying patients and their families.

27) Bearison, D. 2006. When Treatments Fail: How Medicine Cares for Dying Children. New York: Oxford University Press. DEATH-PC
In this work, Bearison provides extremely detailed and honest professional’s accounts of the deaths of children, the struggles among physicians to engage in and provide care to families, the cultural dynamics that affect care, the kinds of relationships with the children and families, and the shattered expectations of a cure. As Bearison illustrates, the interviews were initiated with the question, “What was it like for you to care for (child’s name)?” and further encouraged health professionals by asking, “Tell me more about that, what was that like?” These first questions were a sign for physicians that they could trust and speak their minds. In fact, many physicians overtly thanked Bearison for the opportunity to tell their story, often for the first time. Bearison listened to 110 professionals who cared for 20 different children and their families. Physicians, nurses, child-life specialists, social workers, and psychologists tell their stories in extremely moving, thorough, and honest ways. The departed children ranged in age from newborn to 16 years and largely represented primary cancer diagnoses in addition to the metabolic disorder, AIDS, complications of prematurity, cardiac disease, and head trauma. The stories confront the current belief that pain can always be managed accurately and successfully at the end of life. Even under the best of conditions, with access to trained pain specialists and compassionate clinicians, the fact is that sufficient pain management is not always likely. The narratives reveal the disagreements and challenges intrinsic in treating children’s pain, as well as acknowledging family requests for their children to remain conscious, demands for long-lasting aggressive treatment, feelings of helplessness, and bearing witness to perceived suffering.

E. Disability and Chronic Pain
28) Goffman, Erving. 1963. Stigma: Notes on the management of spoiled identity. Englewood Cliffs, N.J.: Prentice-Hall. STIGMA-ILLNESS
Goffman's study of stigma became a major reconceptualization of the term and the sociological field. Goffman linked stigma with specific social interactions, the construction of social deviancy, and marginalization. Stigma and stigmatization are socially constructed; they are not characteristic per se. Goffman’s primary interest was social theory, though it became clear how Goffman’s ideas could be useful for public health practitioners. Stigma is created in the relationship between what Goffman calls the “normals” and the person with stigma. And usually it implies a certain type of double standard in the form of categorization, Goffman says, “It seems generally true that members of a social category may strongly support a standard of judgment that they and others agree does not directly apply to them” (3). Goffman describes stigma as “an attribute that is deeply discrediting within a particular social interaction” (3). His account of stigma emphasizes public’s attitude toward a person who “has” a trait that fails societal expectations. The person with this characteristic is “reduced in our minds from a whole and usual person to a tainted, discounted one” (3). Goffman suggests that stigma falls into three types: 1) Abominations of the bodyvarious physical deformities; 2) Blemishes of individual characterweak will, dominant or unnatural passions, treacherous and rigid beliefs, or dishonesty; and 3) Tribal stigma of race, nation, and religion—beliefs that are transmitted through lineages and equally contaminate all members of a group. Therefore, society and individuals construct stigma; stigmatized people would struggle between shame and resistance to those public images and public attitudes towards them. This is also a combat between own and other’s images of the self. But as Goffman says, “It is a question of individual’s condition, not his will; it is a question of conformance, not compliance.” What is important to reflect upon is that certain diseases are linked with the highest level of stigma, and they all have common features: the ill person is considered as responsible for having the illness; the illness is severe and incurable; the disease is not clearly understood among the public; and the symptoms cannot be covered up.

29) Murphy, Robert. 1987. The body silent. New York: Henry Holt. STIGMA-ILLNESS
Robert Murphy attempts to grasp the way an undermining distinction between normal and non-normal disabled bodies are made. Murphy proposes disability can be understood as a liminal condition (in Victor Turner’s terms), which means it’s not completely integrated to society and not completely classified within the social hierarchy systems. Both disabilities and chronic suffering show the failure of medical normalizing action, and therefore challenge the whole system of classification of normality/abnormality. This, and the way in which in everyday life disabled and chronic people’s experiences imply unsolved problems with family, work and public interactions, help us to understand how medicine has great difficulties dealing with these conditions. A great pressure is consequently given to silencing, covering, and self-controlling of the “abnormal” capacity of the “damaged self”. Subjectivity, in these cases, is created by the particular “problem” it opposes to family and society. The notion of liminality can help understand the place of disability and chronic illnesses. This system is then intertwined with others, such as gender, race, ethnicity, class. Once that is strongly embodied and producing bodies, abnormality can then be understood as a message, one that reminds “normal” people what they are not, and threatens them by showing them what they can eventually become. For Murphy, disabled people experienced a “revolution of consciousness” and they have gone through a “metamorphosis” meaning that their whole identity has changed completely. Within biomedical practices and the social relationships in general, disabled people feel that they are avoided. It is one of many silenced issues. Even in the medical practice, their full subjective experiences are of little concern in the medical model of disability. Murphy also pays attention to the concept of embodiment and says that for people already born with deficiencies “embodiment” is a problem, and adds, “but at least they can be socialized to their limitations from infancy. On the contrary, most paraplegics and quadriplegics have to become re-embodied to their impairment. And if the loss of function is grave enough, they may even have to become disembodied” (100). Some examples are emotional detachment (as when talking to parts of the body as an object “take that arm”), and ultimately a “radical dissociation from the body.” He concludes that disabled people, with the damaged self, “become aliens, even exiles, in their own land” (111).

30) Greenhalgh, Susan. 2001. Under the Medical Gaze: Facts and Fictions of Chronic Pain. Berkeley: University of California Press. STIGMA-ILLNESS
This book scrutinizes specific forms of biopower functioning at the core of doctor-patient relationships in American biomedicine. This is an auto-ethnography of a life-changing and life-threatening medical experience in which a pain specialist “discovers” a specific disease. Among different kinds of symptoms this specialist infers and diagnoses a recently known chronic disease, something that would have long-lasting effects on his patient. He persuaded himself and his patient that she had a distressing, incurable, chronic condition called fibromyalgia, a condition that is still highly controversial among biomedical specialists, although almost everyone recognizes the painful experience these symptoms may cause (there are still a few professionals that believe this pain is fictitious and not real). Greenhalgh shows her own trajectory (although she differentiates her previous “I” from the author’s voice), an ordeal that lasts 8 months (plus 6 months more for full recovery in which she had to build a “new subjective self”), which was a direct outcome of the harmful effects caused by this wrong diagnosis and treatments. Along the pages Greenhalgh shows us patient’s changes in her internal world, bodily functions, and general health. Greenhalgh brings together analytical tools from medical anthropology, feminist studies, and science and technology studies to clarify biomedicine’s power to generate and intensify suffering, to define and treat disease and influence the self, and to control relationships and lives. This is also a book on the self and emotions, how closely linked emotion and images of the self are to the self. Greenhalgh argues that the biomedicalization of pain, and the professionalization of pain specialists, frequently suppresses the ill and takes the person in the painful body too lightly. She concludes that individual and communal narratives, particularly by the ill themselves, are part of a crucial approach for shifting the culture and politics of pain. In particular, it is central to struggle for agency and voice (Greenhalgh calls this “narrating illness and politicizing pain”) if one does not want to be a passive actor under the medical gaze.