Medical Sociology Lecture 4 Health and Illness – the models PDF

MEDICAL SOCIOLOGY LECTURE 4 Sociology of the Body & Illness experience VENTS SILIS, RSU, FACULTY OF SOCIAL SCIENCE  THE UNITY OF SOUL AND BODY We have intriguing relationships with our bodies. − Body is the only thing that ea...

MEDICAL SOCIOLOGY LECTURE 4 Sociology of the Body & Illness experience VENTS SILIS, RSU, FACULTY OF SOCIAL SCIENCE  THE UNITY OF SOUL AND BODY We have intriguing relationships with our bodies. − Body is the only thing that each of us is permanently “with” – human experience is the experience of having a body. The existence of the body provides a person with a sense of physical integrity, autonomy, and independence. − Aristotle referred to a human as “the unity of soul and Greek term σῶμα (soma); body”. Latin term corpus 2  SOMATIC SOCIETY The cult of the body in consumer culture. − Health is in increasingly conceptualized in terms of body maintenance activities, such as exercise, diet and the avoidance of unhealthy habits. Modern world can be thus defined as a “somatic society” (Turner, 1992): − that is a social system in which political and social problems are often expressed through or manifest in the body. 3  SOMATIC SOCIETY − “The body is the dominant means by which the tensions and crises of society are thematized; − the body provides the stuff of our ideological reflections on the nature of our unpredictable time.” (Turner, 1992: 12). Untitled (Your Body is a Battleground), 1989. A silkscreen portrait made by artist Barbara Kruger. 4  SOMATIC UNCERTAINTY Body = the battleground between the private interests of the individual and the public politics of the collective: − “[Our] bodies are performative, excessive, and ontologically (in)secure, coming to be known and to function simultaneously as individual bodies and (body) parts of the lively collective body politic.” (Purnell, 2021: 1) 5  SOMATIC UNCERTAINTY Changing status of the body in sociology reflects: − “the relationship between the body, self-identity… in the contemporary period of “late” or “high” modernity. − … in conditions of high modernity, there is a tendency for the body to become increasingly central to the modern person’s sense of self-identity.” (Shilling, 2003: 1). Dynamic modernity is characterized by the explicit “crisis of identity”. 6  SOMATIC UNCERTAINTY The uncertain body: − “We now have the means to exert an unprecedented degree of control over bodies, yet we are also living in an age which has thrown into radical doubt our knowledge of what bodies are and how we should control them. − As a result of developments in spheres as diverse as biological reproduction, genetic engineering, plastic surgery and sports science, the body is becoming increasingly a phenomenon of options and choices” (Shiling, 2003: 3). 7  SOMATIC UNCERTAINTY A sociology of the body → bodies are recognized as both cause and consequence of societal forces. − The bodies we inhabit shape the ways people react to us, the social and physical habitats we may access. “… the social and cultural space (..) shapes our daily habits of health maintenance and grooming, even influences the way our bones grow, and our genes express.” (Boero & Mason, 2021: 3) 8  METAMODERNISM: CULTURE WARS Old value systems are collapsing under their own contradictions: − Current culture wars: a radical desire for social revision (revolution?) − an attempt to correct the perceived injustice & discrimination, and a weaponization of victim identity. Uncertainty → accelerated by the new (online) social media, giving disproportionate weight to minority opinions: − Narrow sets of interests of different minorities (from woke-left to alt-right) attempt to dominate the public agenda as society becomes more and more tribal. 9  SOMATIC UNCERTAINTY In the fog of the culture wars, complex issues like gender dysphoria can be reduced to primitive slogans. − “Gender dysphoria refers to a person’s affective/cognitive discontent with the assigned gender.” (“Diagnostic and Statistical Manual of Mental Disorders (DSM 5)”, APA, 2013.) 10  SOCIOLOGY OF THE BODY “So why only two, and not more, sexes? Considering the nature of sexual reproduction, gamete evolution and anatomy, we answer that question with a question (perhaps a challenge): What function could a third sex have?” There are only two biological sexes. But there can be multiple ways of (Hilton & Wright, 2024, “Two Sexes”, pp. 20-21) culturally constructing the gender variants (Routledge, 2024). 11  SOCIOLOGY OF THE BODY SoB is a wide and evolving field of sociological interpretation of the body at the age of metamodernism: − The era of new uncertainty reflects dialectical struggle between the modernity and postmodernism. However, in medicine there is an old certainty: Health, disease and illness are fundamentally embodied experiences that are embedded in social contexts. Nettleton S., 2020, “The Sociology of Health and Illness”. 12 DISEASE, ILLNESS, SICKNESS 13  BASIC DISTINCTION Disease – objective physiological or mental disorder at the organic level. Illness – subjective state, a psychological awareness of dysfunction at the personal level (this is where the illness experience starts to take place). Sickness – a state of social dysfunction, a social role (Parsons again) assumed by the individual that is variously specified according to the expectations of a given society, and that thereby extends beyond the individual to include relations with others. Susser, M. “Editorial: Disease, disability and handicap”, Psychological Medicine, 1990, 20, 471-473 14  ILLNESS EXPERIENCE Any illness constitutes a biographical disruption, a discontinuance of an ongoing life. − The framework of daily life is broken to a bigger or lesser extent (depending on the severity of illness). Hence the sense of shocking surprise, combined with sudden awareness of vulnerability and confusion. − Why this? Why now? Why me? Illness invites a re-evaluation of our perception of the body, the self and our options in life (ability/disability). 15  HEALTH, ILLNESS AND DISEASE Illness takes some part of our life – it has a temporal extension. Hence the important distinction: − Acute illness - only a temporary significance in our lives: it constitutes a transitory and limited disruption; an acute illness may cause us to notice our own frailty. − Chronic illness changes the very foundation of our lives: it creates new and qualitatively different life conditions – disruption is permanent. Even the past acquires new meaning: as «life before» the illness. 16  ILLNESS EXPERIENCE Impact of illness: − interaction with the social world becomes problematic; − identity changes from healthy to “sick role”, − dependence on others increases, − sense of self (self-reliance, self-esteem) suffers greater or smaller damage. 17 IMPAIRMENT, DISABILITY AND HANDICAP 18  IMPAIRMENT, DISABILITY, HANDICAP Since the 1960s there have been various attempts to schematize the complex relationships between the three. A simplified view matching Bio-psycho-social model of health. 1. Impairment – disturbance at the organ level (bio-). 2. Disability – disturbance at the level of person (psycho-). 3. Handicap – disturbance at the level of social interaction (social). 19  BIOMEDICAL MODEL OF DISABILITY The WHO International Classification of Impairments, Disabilities and Handicaps (1976): − IMPAIRMENT: any loss or abnormality of psychological, physiological, or anatomical structure or function... − DISABILITY: any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being... − HANDICAP: a disadvantage for a given individual, resulting from an impairment or a disability, that limits or prevents the fulfilment of a role that is normal (depending on age, sex, social and cultural factors) for that individual. https://iris.who.int/bitstream/handle/10665/41003/9241541261_eng.pdf 20  BIOMEDICAL MODEL OF DISABILITY Biomedical model highlights a straightforward transition from impairment to disability and handicap: there is a direct causal link between them: Disease → Impairment → Disability → Handicap Types of disability: 1. physical, 2. mental, 3. both. 21  SOCIAL MODEL OF DISABILITY The Disabled People's International (DPI) definition: − IMPAIRMENT: is the functional limitation within the individual caused by physical, mental or sensory impairment. − DISABILITY: is the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers. (DPI, 1982). There is no direct causal link between impairment and disability: − disability is wholly and exclusively social. 22  SOCIAL MODEL OF DISABILITY Ability/disability depends on the infrastructure which is result of an inappropriate social policy: − “It is a consequence of the failure of social organisation to take account of the differing needs of disabled people and remove the barriers they encounter.” (Mike Oliver, 2004: 279). Lack of ramp is what makes a person in wheelchair not able to go up. 23  SOCIAL MODEL OF DISABILITY The DPI schema does not deny that some illnesses may have disabling consequences, and many disabled people have impairing illnesses at various points in their lives. To avoid medicalization of disability, there needs to be a distinction of: − the aspects of disability that should be addressed by therapeutic interventions, − the aspects that can be solved by policy developments (hence the need for political action). (Mike Oliver, 2004: 280). 24  CRITICISM Social model has been criticized for its assumed denial of “the pain of impairment”, both physical and psychological. The answer to critics: − pain and ill-health are individual experiences that belong to the medical frameworks. − the aim of DPI model was to focus on political action against discrimination and prejudice (both belong to social framework). Debate about the nature of disability is an example of the application of conflict theory (distribution of resources among the social groups). 25  ILLNESS NARRATIVES What does it mean to be ill? 26  NARRATIVE KNOWLEDGE Narrative: a story = a spoken or written account of connected events. − a rhetorical system that conveys meaning in a structured way. Story is also a form of transferring the knowledge to others: − Culture and history = a shared narrative of “who am I” and “who we are”. Medicine as culture: “the narrative has a central place in medicine as an instrument of formulating and conveying clinical knowledge.” 27  ILLNESS NARRATIVES The story → towards anamnesis: a means by which doctors acquire a more detailed clinical picture of the patient. − Both patients and doctors tend to structure the illness events in the form of “stories”. − Case histories and case presentations developed by doctors to communicate to each other are likewise presented as “stories”. 28  ILLNESS NARRATIVES − “The medical practitioner must become versed in the patient’s narratives, not only to make a correct diagnosis, but also to propose a treatment programme that is acceptable to the patient. − Becoming acquainted with the patient's illness narratives also plays an important role in determining how the communication between doctor and patient develops, and how the patient experiences the information conveyed by the doctor.” (Hayden, 1997:53-54). 29  ILLNESS NARRATIVES “One of our most powerful forms for expressing suffering and experiences related to suffering is the narrative” (Hyden, 1997: 49). Narratives not only articulate suffering but also give the sufferer a voice – reflection of their daily experiences in non-medical way. Expressing suffering through narrative: turning the pain into resource. 30  ILLNESS NARRATIVES Subjective accounts of coping with illness: − “The stories… offer an unmatched window into subjective experience, but also because they are part of the image people have of themselves. − These narrative self-representations exert enormous power. − They shape how we conduct our lives, how we come to terms with pain, what we can appropriate from our own experience, and what we disown – at the familiar price of neurosis.” (Ochberg, 1988) 31  THE AIM OF ILLNESS NARRATIVES Illness narratives = means by which people seek to make sense of their experiences. Illness narratives provide biographical and cultural context of illness: − how people experience, understand and incorporate their illness into their identity. Harvard psychiatrist and anthropologist: interpreting patient’s illness experience is a core skill of being a doctor. 32  THE AIM OF ILLNESS NARRATIVES Illness narratives help to formulate a revised identity and new context for living after the disruption of illness. Diabetic Alcoholic Parkinsonian These are the examples where identity is expressed through illness. 33  5 USES OF ILLNESS NARRATIVES 1. to construct a world of illness; 2. to reconstruct one’s life history in the event of chronic illness; 3. to explain and understand the illness; 4. to assert or project one's (new) identity; 5. to transform illness from an individual to a collective phenomenon. (Hyden, 1997: 55) 34  1. THE WORLD OF ILLNESS The illness is experienced as a disintegration of patient’s ordinary or “healthy world”. Through narrative suffering is given a form: − the illness is articulated and positioned in time and space, and within the framework of a personal biography. Narrative then connects the symptoms and disruptions of illness into a meaningful whole – thereby creating the world of illness. 35  2. RECONSTRUCTION OF LIFE HISTORY Facing the change: we are forced to revise our personal identities and life histories in terms of the illness. − illness narratives aim for the reconstruction of identity and personal life. A “loss of self”, particularly in connection with chronic illness. fundamental changes in the individual's life and lifestyle: − increasing physical handicap, declining capability, or extreme sensitivity to certain chemical substances or certain types of social situations. 36  2. RECONSTRUCTION OF LIFE HISTORY By interpreting the illness, we re-establish the relationship between the self, the world and our bodies. Narrative reconstruction of the self is concerned with 2 things: 1. Finding meaning and importance of the illness within the context of one's own life. 2. Reconstructing the narrative of the self – the illness Illness = symbolic means employed by the psyche to bring becomes an epiphany. unresolved psychological conflicts to the awareness level. 37  3. EXPLANATION AND UNDERSTANDING OF ILLNESS The illness raises questions for the individual: − Why me? − Why was I the one afflicted? − How will the illness affect the functioning of my body? Narrative = provides the possible explanations for the illness and perhaps even for finding a way of relating to the illness. − We seek to establish some kind of practical relationship to the illness to deal with the practical problems caused by the Sontag’s work challenges the illness. victim-blaming association between the illness and the character of person. 38  3. EXPLANATION AND UNDERSTANDING OF ILLNESS Illness forces us to ask ourselves if there is a connection between the illness and our moral values embodied in the lifestyle. An example: − psychiatric patient treated for long-term depression and several suicide attempts. − To him a central question was whether the causes were outside his control and to what extent he himself was responsible for his situation? − And the question of whose moral standards he was trying to emulate. 39  4. STRATEGIC DEVICE Illness narratives can be used to achieve certain strategic effects in the social interaction. − In illness narratives different groups of professional staff assert their own positions and knowledge in relation to the medical hierarchy. − Parents of children who have fallen ill can construct narratives about the maltreatment their children suffered at the hands of care professionals to assert their own moral value as parents or to justify their own actions. (Baruch (1981)). 40  4. STRATEGIC DEVICE Descriptions of illness can also be used for strategic purposes, − for example, to excuse or explain certain actions or behaviour by blaming it on illness. − A shared cultural conception of illness as something that befalls one is used to disclaim any responsibility for one’ s actions. 41  5. TRANSFORMING INDIVIDUAL EXPERIENCE INTO COLLECTIVE EXPERIENCE Traditionally, illness narratives concern the individual’s private life. But by publicizing the illness narrative it becomes a part of an all- encompassing, political and social narrative and context. − Disability narrative is one example of collectivizing the illness experience. − Also, epidemics (like C-19) pose the question of whether the narrative can collectivise the illness experience and observes the social implications of illnesss. Narrative removes the illness experience from private experience and makes it a collective experience. 42  ARTHUR W. FRANK: RESTITUTION, QUEST AND CHAOS 43  ILLNESS NARRATIVES – RESTITUTION Based on the Parsonian sick role: − a person is ill, finds out what is wrong, seeks help and/or uses medication, and the health is restored. Powerful “master narrative” of medicine: dominant in popular culture and also fits social expectations (expecting miracles of modern medicine). − Both patients and medicine are most comfortable with this narrative. 44  ILLNESS NARRATIVES – QUEST “defined by the ill person’s belief that something is to be gained through the experience” (Frank, 1995: 115). Illness is a metaphorical journey from which the ill person may gain self- awareness, or the ability to help others. 45 46 ILLNESS NARRATIVES – QUEST Illness becomes “personified” as an enemy.  ILLNESS NARRATIVES – CHAOS There is no actual or imagined end. − There is no narrative “structure” as such; no “plot”, no “metaphorical journey”. Chaos narratives are difficult to “listen” to: – they may invoke anxiety and remind the listener of their own vulnerability. − “Chaos stories are also hard to hear because they are too threatening. The anxiety these stories provoke inhibits hearing” (Frank, 1995: 98). 47  ILLNESS NARRATIVES – CHAOS Chaos narratives remind doctors of their limitations: − “In these stories the impression of remedy, progress, and professionalism cracks to reveal vulnerability, futility and impotence…” (Frank, 1995: 97). − “The teller of chaos stories is, preeminently, the wounded storyteller…” (Frank, 1995: 98). 48  ILLNESS NARRATIVES – CHAOS Chaos stories remain the sufferer's own story, but the suffering is too great for a self to be told. The voice of the teller has been lost because of the chaos, and this loss then perpetuates that chaos. − “Being a mute witness, caught within the chaos itself, is a condition of horror” (Frank, 1995: 109). 49  ILLNESS NARRATIVES – CHAOS The person is being swept along, without control, by fundamental contingency of the illness. − Efforts to reassert predictability have failed repeatedly, and each failure has had its costs. “Perfect Chaos” (2011) – a harrowing and inspiring story, of an illness (bipolar disorder - notice, that “disorder = chaos”) that mother and daughter conquer together every day. 50  ILLNESS EXPERIENCE – ULCERATIVE COLITIS A non-specific inflammatory condition. Main symptoms: - diarrhoea, blood in the stool, - abdominal pain, - raised temperature, - loss of weight and energy. Its onset is most common in early adulthood. 51  ILLNESS EXPERIENCE – ULCERATIVE COLITIS Unpredictability of symptoms (diarrhea) interferes with social functioning. − The proximity of toilets becomes essential. − Rushing away to the toilet during conversations or meals can be disruptive and embarrassing. 52  ILLNESS EXPERIENCE – ULCERATIVE COLITIS The most common coping strategies are: − monitor and control their diet; − scan the environment to ensure that they had toilets close to hand; − avoid certain (risky) social situations, especially those which involved eating and drinking in public. Goal – to be able to live as “normally” as possible and to maintain a “normal” identity. 53  ILLNESS EXPERIENCE – ULCERATIVE COLITIS There is no obligation to tell anyone about one’s chronic illness. IS THIS PERSON SAFE? Disclosing information is risky. Some people are not capable of understanding: − Risk of invalidating, belittling and abuse. − Loss of romantic relationship. − Loss of work. 54  ILLNESS EXPERIENCE – ULCERATIVE COLITIS Surgical solution – large bowel is surgically removed. ileostomy is constructed. A person will get rid of the disease but will have an altered body and a stoma appliance. Maintaining sexual and social relationships is complex and can affect a person’s self-confidence. − “I am eighteen years old. Who's gonna love me with this?” 55  ILLNESS EXPERIENCE – ULCERATIVE COLITIS Problem with the chaos narrative → it is a really hard life. Tessa Miller challenges readers → showing medical racism, gender discrimination, poverty and lack of resources for care. Battling with Crohn’s disease, Tessa Miller holds up a mirror to the reader and asks us to confront our pain and our own inner dialogues about our bodies that can be so very cruel. 56  NARRATIVE ETHICS – SUFFERING At the center of narrative ethics is the wounded storyteller. Thus, narrative must return to the wound itself, to the conditions of suffering. 1. Suffering involves whole persons and thus requires a rejection of the historical dualism of mind and body. 2. Suffering takes place when a “state of severe distress... threaten[s] the intactness of person” – impending the destruction of the person. This distress can be immediate or imminent, real or perceived as in future. 57  NARRATIVE ETHICS – SUFFERING 3. Suffering can occur in relation to any aspect of the person. 4. Resistance to suffering – a person must not only perceive a threat but must resist that threat. Telling illness stories is a form of resistance. 5. Social nature of suffering – through the stories the experience of suffering is shared with others. This teaches others the models of coping as well as enhances the solidarity between the people. 58  THEORY OF SOCIAL INTERACTIONISM 59  SOCIAL INTERACTIONISM The first major theoretical perspective to challenge Parsons and structural-functionalist theory in medical sociology was symbolic interaction, Based largely on the work of George Herbert Mead (1934) and Herbert Blumer (1969). 60  SOCIAL INTERACTIONISM Human beings have the capacity to think, define situations, and construct their behavior on the basis of their definitions and interpretations. Annandale (1998: 22) pinpoints the contradiction inherent in any interactionist encounter: − how the individual both modifies and is modified by the social relations of health and illness in which she or he participates. 61  SOCIAL INTERACTIONISM The development took place in the 1960s, when old theories (functionalism and political economy) were abandoned in the search for a “more humane sociology”. − Studies how individuals interact with others and how they interpret this social interaction: The interpretations then become a shared meaning – hence the idea that the meagning of “illness” or the diagnosis is a constructed one. 62  SOCIAL INTERACTIONISM Social reality is constructed on a micro-level by individuals interacting with one another based on shared symbolic meanings. − “It is the position of symbolic interaction that the social action of the actor is constructed by him [or her]; it is not a mere release of activity brought about by the play of initiating factors on his [or her] organization.” Blumer (1969: 55) 63  SOCIAL INTERACTIONISM The major figures in early medical sociology were Anselm Strauss and Erving Goffman. − Strauss made his own contributions the social process of death and dying (Glaser and Strauss 1965, 1968); He also described the “negotiated order” of hospital routine featuring a minimum of “hard and fast” regulations and a maximum of “innovation and improvization” in patient care, especially in emergency treatment (Strauss et al. 1963); 64  SOCIAL INTERACTIONISM Strauss’ biggest contribution is the establishment of grounded theory methodology featuring the development of hypotheses from data during analysis, rather than before. − Up to this day this is one of the main methods in qualitative research. Glaser and Strauss (1967). 65  SOCIAL INTERACTIONISM Goffman, who became a major theorist in general sociology, began his research career in medical sociology by using participant observation to study the life of mental hospital patients. − His classic work is Asylums (1961), presented the concept of “total institutions” that emerged as an important sociological statement on the social situation of people confined by institutions. 66  SOCIAL INTERACTIONISM Medical sociology gained another significant addition from his concept of stigma and mechanisms of stigmatization (Goffman, 1967). − “Stigma” – an attribute, behavior, or reputation which is socially discrediting in a particular way − Goffman described stigmatization as a process by which the reaction of others spoils a normal identity of the individual: stigmatization is a process of negative stereotypization. 67  SOCIAL INTERACTIONISM With the introduction of symbolic interactionist research medical sociology became an arena of debate between two of sociology’s major theoretical schools. A variant of symbolic interaction is labeling theory: − This theory held that deviant behavior is not a quality of the act itself, but a consequence of the definition applied to that act by others (Becker 1973). − That is, whether an act is considered deviant depends upon how other people react to it. Labeling theory created a controversy in psychiatry (Scheff, 1999), which received criticism. 68  SOCIAL INTERACTIONISM Symbolic interaction had its particular (microlevel) orientation toward theory construction. Also, it developed qualitative research methodologies: − of participant observation in focus groups, − unobtrusive measures such as biographies and life histories (biographical narratives), − and situational analysis consisting of mapping the positions, situations, and social worlds of the study subjects. These methodologies focused on small group interaction in natural social settings. 69 Thank you! 70