EASA2016: Anthropological legacies and human futures
- Vincent Pidoux (Université de Lausanne) email
- Natasja Kingod (Steno Diabetes Center A/S/Department of Anthropology, Copenhagen) email
This panel will bring a critical reflection on embodiment and identities related to chronic illness from a variety of theoretical and empirical approaches. Relationship between medical knowledge and experience of disease will be discussed. This panel is a spin-off of Panel 038 on self-management.
In past decades, chronic diseases have become a salient social, political and healthcare issue. Living with a chronic illness is characterised by a set of tensions and uncertainties, which strongly challenge social sciences research. In this panel, relationship between medical knowledge and experience of disease will be theoretically and empirically addressed.
The panel aims to bring together ethnographic and qualitative contributions to a better understanding of chronic disease as embodied forms of living and "identity work" done by people living with it. The panel will thus highlight reciprocal influences and tensions between mainstream current medical practices and subjectivities. To do so, it will question to which extent medical knowledge is part of what makes chronically ill people patients, persons, human beings, subjects, etcetera. How the ways of knowing exhibited in current medical practices affect (allow, limit, enhance, etc.) the embodiment and subjectivities of chronically ill people? How do they deal with uncertainty? How do they relate to medical knowledge and make sense of heterogeneity, difficulty, and indeterminacy? This panel will tackle these questions in order to shed light on critical aspects related to embodiment and identity in chronic illness.
This panel is a spin-off of the Panel 038 "The self-management of chronic disease: critical perspectives".
This panel is closed to new paper proposals.
"I have learned to live like a sick person": negotiating personhood in a centre for psychosocial reintegration in Bucharest
By using both a phenomenological perspective and a cognitive approach, I explore the subjective experience of people diagnosed with schizophrenia, their sociability and the negotiation of their personhood.
This paper focuses on how a person diagnosed with schizophrenia experiences her/his illness from a social point of view, and how the continuous interactions with a psychosocial centre for reintegration shapes her/his experience. The centre is attached to a state hospital in Bucharest, Romania, but people usually attending it, are no longer hospitalized. They tend to live a life divided between the centre and their homes. Lack of statistics regarding the social condition of people diagnosed with mental illnesses in Romania indicates that there is a blind spot to be addressed. Data from my fieldwork (October 2014 - March 2015) links the (re-)construction of personhood, to several layers that impact a person diagnosed with schizophrenia, such as bureaucracy, the medical setting or, what I suggested naming 'medicalized sociality'.
My research suggests that having the right political mind set and even the right laws in place, does not always guarantee social justice. Furthermore, the continuous contact with the medical settlement, influences the construction of self-perception, as well as the sociability of people attending this centre. Through an interdisciplinary approach I show that dysfunctional sociability associated with schizophrenia, is not only linked to dysfunctions in the cognitive architecture, but is also a byproduct of subjective experience.
'Chronic' sufferers of a 'curable' condition: the ambiguities of care in long-term eating disorders
This paper analyzes framings of ‘chronic’ patienthood in eating disorders. It suggests that the discursive construction of some patients as ‘chronic’, amidst an overarching discourse of eating disorders as ‘curable’, materializes in ambiguous and cyclical clinical care.
While eating disorders are not classified as chronic conditions, about thirty percent of eating disorders patients are labeled 'chronically ill'. This apparent paradox - the attribution of chronicity to individual patients, rather than to the disorder with which they are diagnosed - implicates a treatment landscape in which discussions of 'self-management', or living safely with an eating disorder, are largely absented. With eating disorders constructed as behavioural disorders to be 'cured', 'chronicity' is laden with moralizing discourses. Patients labeled 'chronic' are framed as non-compliant or lacking readiness to recover; and, within a system of clinical care targeted at recovery, these patients face repeated inpatient and outpatient treatment, often to little avail.
This paper analyzes constructions of 'chronicity' and care in eating disorders, drawing on interviews with long-term eating disorders patients from Israel and the UK, patient blogs, clinical articles on the management of chronic eating disorders, and instructional webpages (such as those provided on the NHS website) directed at eating disorders patients. The analysis highlights the challenges that 'chronicity' poses to biomedical concepts of eating disorders and recovery, and to clinical models of efficacious care; it also interrogates how the term 'chronic', when used in the context of a disorder framed as 'curable', weaves into patients' narrated experiences of stigma, risk, and resistance. Offering a multi-dimensional account of 'chronicity', this paper suggests that the discursive construction of some patients as 'chronic', amidst an overarching discourse of eating disorders as 'curable', materializes in ambiguous and cyclical clinical care.
Narrating narcolepsy between anger and trust
The paper is about the Swedish mass-vaccination with Pandemrix during the swine-flu pandemic in 2009 and the following side-effect with children and young adults suffering from narcolepsy. How do children and parents cope with this chronic disease?
The mass-vaccination with Pandemrix was the most important preventive measure in Sweden during the A(H1N1) influenza pandemic of 2009-2010 and covered 60 percent of the Swedish population. From 2010 an increased incidence of the neurological disease narcolepsy was reported, and an association with Pandemrix was affirmed for 200-300 children and young adults. The parental experience of this side effect provided a starting point for a collectively shaped critical narrative to be acted out in public, but also personalized narratives of continual learning about the disease and its consequences. This didactic functionality resulted in active meaning-making practices about how to handle the aftermath, such as using dark humor, cognitive tricks, and making themselves and their children's bodies both objects and subjects of knowledge. Using material from interviews with parents, this mixing of knowledge work and political work together with its potential for reflective consciousness, is discussed.
"illness changes the way you feel": managing the lived experience of chronic disease and emerging challenges to the biomedical hegemony
We show lived experience of patients in urban and rural Chile and the agentic ways in which they interpret and act upon chronic suffering. We argue that patients share ideas and practices that translate into different imaginaries of well-being, which may challenge the hegemonic biomedical approach.
In this paper we discuss the challenges and opportunities of self-management of chronic disease by looking at the lived experience of illness in Chile. Based on qualitative research in urban and rural areas, we present ethnographic evidence on the agentic dimension of chronic diseases and the ways in which people interpret and act upon suffering. We argue that patients share ideas of successful treatment outcomes that translate into different imaginaries of well-being, which may or may not coincide with mainstream therapeutic education (TE) or other biomedical therapeutic guidelines.
How do diagnosed patients relate to the biomedical therapeutic model? What are the alternative subjective frameworks that emerge during treatment? How do people and their communities challenge biomedical knowledge? First, we discuss the health seeking behavior of policonsultant patients diagnosed with not localized ill-health syndromes and their approach to unconventional therapies as part of their self-management strategy. Secondly, we examine the case of Aymara tuberculosis patients and their struggle in administering stigma and exclusion. We explore shared illness semantic networks that help them to cope with a chronic infectious disease that heavily impact their emotional well-being. Finally, our focus on the lived experience of both not localized illness and tuberculosis shows that patients are active in appropriating plural medical frameworks in order to resist and contest established medical knowledge such as the division between mind and body, and the global standardization of well-being.
The manifold sites of information: managing uncertainties and responsibilities in transplant medicine
This paper aims to shed light on patients’ use of knowledge to manage uncertainties, and on medical staff’s usage of information to foster patients’ self-management. It will critically reflect on the triad of (un)certainty, information, and self-responsibility in the case of chronic liver diseases.
Uncertainty is an inescapable part of social life; it is central to human existence and inseparable from matters of life and death. This becomes especially obvious in the case of life-threatening, chronic diseases. Focusing on the waiting time for a new liver in the context of the German transplant system, I want to shed light on the manifold sites and usages of information in a clinical context. I aim to show how people use information to make sense of an uncertainty that literally puts them at a place between life and death, and how medical staff employs information to foster patients' self-responsibility and self-management.
I want to discuss the concept of the informed patient and the triad of (un)certainty, information and self-responsibility in the context of chronic liver diseases. There are two diametrical existential stances prevalent in the life of people on the waiting list: the hope for a new liver, and the possibility of one's upcoming death. This tension entails a complex array of emotions induced through the unpredictability of the process and the uncertainties attached to the future. In this paper I attempt to shed light on patients' appropriation of knowledge to manage the existential and temporal uncertainties at hand, and on medical staff's usage of information to foster patients' self-management and self-responsibility.
"Us and the others": young people in the adults' diabetes unit
I will explore the personal and relational implications for young patients with diabetes when seeking ‘care’ in the adults' unit. This clinical space invokes compliance and passiveness within a landscape populated by others' diseased and incomplete bodies.
Drawing on ethnographic fieldwork conducted in Santiago de Chile during 2014, this paper examines the experiences of young people with type 1 diabetes (T1D) when seeking care at the adults' outpatient diabetes unit. When young people are moved to adult care, they face for the first time a clinical environment that seems hostile and disease-focused. The adults' unit constitutes a shared space in which clinicians provide care for young people with T1D, as well as for older adults and the elderly who have developed serious diabetes complications. For young people, this unit is populated by "old, incomplete, chopped bodies", which embody the threat of diabetes complications. I will argue that in this space of care, young people's previously 'empowered' and 'autonomous' selves are threatened, needing to be re-constructed in opposition to "others" (patients and clinicians). This is a space they dread visiting as they constantly find themselves explaining which type of diabetes they have and what sort of patients they are: "They treat you as if one was a bad patient, one of those who are stubborn and don't take care of themselves" (making reference to those with complications). Through this paper I will question the social, moral and emotional implications for young patients inserted in a public health system, which does not seem to respond to their particular needs. Here, official discourses of care, empowerment and autonomy, are translated into practice through compliance and passiveness. I will do this by highlighting young people's narratives of disappointment, distress and dissatisfaction.
Animate instruments: dogs as biomedical resources empowering human self-care practices in Type 1 diabetes
Taking an ethnographic approach to the self-management of Type 1 diabetes that draws on anthrozoology and the sociology of health and illness, I examine the role of the medical alert assistance dog as an animate resource empowering human self-care practice and social integration.
The chronic illness that is Type 1 diabetes sets severe limitations on the activities and coping behaviours of people living within its constraints, particularly among those whose recognition of the signs heralding hypoglycaemic episodes has been lost. Self-management of this illness can become a daily scourge and failure to enact its survival mechanisms can result in hospitalisation or require the attendance of health care professionals, family members or work colleagues to prevent unconsciousness and possible coma and death. The ever-present need to check blood glucose levels and balance insulin intake with diet, exercise, stress or barometric change, can cause withdrawal from social activity and employment in order to self-manage optimum 'normal' life practices.
Bringing warmth of companionship, as well as aiding improvement in health care practices, is the trained medical alert assistance dog who, through macrosmatic olfactory accuracy in scent detection, is able to forewarn the person with Type 1 diabetes that their blood sugar levels have fallen or risen to unsafe extremes and that blood-testing and insulin- or carbohydrate-intake adjustment need to take place immediately.
Observation of the symbiotic co-existences of diabetes alert assistance dogs and unwell humans as they co-manage this chronic illness, has resulted in ongoing ethnographic research which acknowledges the significance of these autonomous medical assistants as innovative, reliable additions to the diabetes medical resources arsenal: nonhuman animals who, through multispecies collaboration, are enabled to extend the illness-management practices of their human partners.
This panel is closed to new paper proposals.