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- Convenors:
-
Heather Howard
(Michigan State University)
Paul Mason (Macquarie University)
Narelle Warren (Monash University)
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- Format:
- Panels
- Location:
- Ligertwood 113
- Sessions:
- Friday 15 December, -, -
Time zone: Australia/Adelaide
Short Abstract:
Transformations within and between bodies, and their physical and affective environments, continually shape the possibilities of a 'good life'. This panel explores how chronicity is embedded in everyday encounters, enacted through interpersonal relationships, and empowered through technologies.
Long Abstract:
Disabling and chronic conditions, whether lifelong or acquired, prompt transformations within individuals and between people. While a 'good life' is often sought, what constitutes this, how it can be achieved, and for whom it applies varies across cultural settings and state systems. Bodily conditions are central to these 'moral laboratories' of the everyday experiences of people living with chronic conditions, and plays out iteratively: while embodied effects of chronicity necessitate shifts in the relationships between or within bodies, so too may transformations in such relations compel a reconsideration of chronicity itself. In this panel, we attend to the complex disciplinary and agentive relations - between people, with and between bodies, and shaped by broader contexts - in creating an inhabitable world in which a 'good life' can be made possible. Papers will focus on the relational, affective and contextual transformations of interpersonal encounters as a result of chronic illness or disability. Practices of care may be important here, particularly insofar as their negotiation or improvisation reveals intersubjective understandings of what a good life may be. Transformations within and between bodies, and their physical and affective environments, highlight the repertoire of variable components continually shaping the possibilities of a 'good life'. Taking disability and chronic conditions as our focus, this panel invites papers to critically examine how chronicity is embedded in everyday encounters, enacted through interpersonal relationships, and empowered through the use of available technologies.
Accepted papers:
Session 1 Friday 15 December, 2017, -Narelle Warren (Monash University)
Paper short abstract:
Care, as much as it involves functional tasks, is grounded in and expressed through affective practices. As Parkinson's disease progresses, everyday care interactions become increasingly intimate. This paper discusses such changes, and how a sense of 'the good life' is maintained.
Paper long abstract:
Care in the context of Parkinson's disease (PD) is often provided by spouses or family members, either alone or in combination with formal (paid) care. At the policy and health services level, this care provision is often assumed to occur unproblematically, and is seen as being relatively static in nature within each of the three broad levels of PD progression (early-, mid- and late-stage). This stance, however, fails to recognise that neurodegeneration occurs incrementally, week-by-week and month-by-month. Care needs change dramatically in response to this subtle progression, and become increasingly intimate (or personal) over time. Based on ethnographic research in Australia, this paper explores the experiences of family carers of people with PD and focuses on the affective impacts of PD care provision. I start by considering the notion of care as an affective practice, based upon the spousal relationship and broader familial and social networks, which is constantly redefined through the (ongoing) integration of new knowledge into existing expressions of care. Care, for my participants, is both a moral obligation associated with the spousal relationship (cf. Mattingly, 2014) but also produces changes in the nature of the spousal relationship itself.
Sally Robertson (University of Western Australia)
Paper short abstract:
Fibromyalgia remains one of the most controversial conditions in present-day Western medical practice, despite increasing aetiological evidence. This paper explores the marginalisation of sensory experience in Western medical perceptions of fibromyalgia, from a neuroanthropological perspective.
Paper long abstract:
Fibromyalgia is a neurosensory condition in which individuals experience widespread pain, fatigue, cognitive difficulties and heightened sensory sensitivity. Pain, fatigue and cognitive symptoms have received the most attention in the medical literature, while sensory symptoms have often been overlooked and not infrequently cast as offshoots of perceived psychological illness or problems of everyday malaise. Even though neuro-imaging research over the past 15 years has identified neurological processes underlying the condition, its status as a medical diagnosis has remained highly contested. Some medical practitioners continue to view it as a psychological condition at best, and a made-up diagnosis attributed to malingerers at worst. This paper considers how a cultural bias towards an inorganic-organic and mind-body dichotomy has obscured the sensory as a phenomenological experience in fibromyalgia. It examines the historical and cultural processes that have contributed to sensory symptoms often being considered inconsequential, while highlighting how the few researchers and medical practitioners who have paid attention to these symptoms have made the most fruitful advances in understanding the condition. Utilising a neuroanthropological perspective, the paper explores the continuous interplay between a person’s neurology and the sociocultural world they inhabit. How might a person’s agency be affected if their sensory experiences are viewed as strange, irrelevant or unintelligible? The paper also considers the anthropological significance of the dissolution of the nature-nurture dichotomy in the emergent field of epigenetics, and identifies the human nervous system as a site of enculturation.
Iza Kavedzija (University of Cambridge)
Paper short abstract:
Aging may lead to an increased need for support. This in turn requires attention to the question: Who to depend on? In answering that question older Japanese harbour an attitude of hope and enact a particular mode of citizenship, one that relies on cultivation of a nexus of interdependence.
Paper long abstract:
Unprecedented life expectancy and associated demographic changes have led to widespread anxieties about aging on the national level, in the local communities, as well as on the personal level. Communities and individuals respond to the challenges of aging and care in older age in various and imaginative ways, crafting networks of support and strengthening a range of social ties. In this paper I present the case of a community in South Osaka, chosen for a high proportion of elderly population, and describe some of the networks of support in the neighbourhood, focusing particularly on a Non-Profit Organization (NPO) providing services for the elderly. I describe the beginnings of the organization which started as a 'tasukeai' or a mutual aid network inspired by the ideas of well-known social activist Hotta Tsutomu. I focus on the activities and motivations of people involved in the networks of support, many of whom are themselves elderly or concerned about aging. In doing so I explore the organizational and broader social context within which hope arises and move to explore the motivations of the people involved, outlining what I term an 'attitude of hope'. I argue that for the people involved in the community activities and support networks hope is not a form of passive resignation, but rather an active attitude and a form of citizenship. In the words of Paolo Freire: 'hope as an ontological need, demands anchoring in practice… just to hope is to hope in vain' (1994:2).
Tayhla Ryder (Macquarie University)
Paper short abstract:
This paper examines the decisions around disclosure made by people with autoimmune diseases. It considers the significance of illness recognition for individuals with invisible illness, and in what ways a 'good life' is made possible through interpersonal relationships.
Paper long abstract:
For people with autoimmune diseases the fluctuating nature of their illness renders the communication of their experience an ongoing challenge. As other researchers have observed, the invisibility of many chronic illnesses means that individuals are able to make decisions about concealing, revealing, and/or disclosing their illness to others. This decision making is often discussed through the framework of risks and benefits, given that disability or having a disease may constitute a 'discreditable identity' (Goffman 1963). This paper proposes that disclosure of illness in interpersonal relationships opens one up to an existential vulnerability; the risk of being denied recognition or being devalued in the eyes of others. Drawing on a dozen interviews with Australian women living with autoimmune diseases conducted as part of a Masters of Research, this paper explores how chronicity is communicated, acknowledged, denied and overlooked in everyday encounters. The difficulty of verbalising the space in between illness and health and being 'sometimes sick' impacts the ability of people with fluctuating illness and episodic disability to communicate their experience, and in turn to receive a degree of understanding and support. Disclosure is not a singular event but an ongoing process that is context dependent, done in degrees, and particular to the relationships in which it unfolds. If the possibility of a good life is tied to the recognition of one's experience by others or to being seen on one's own terms, then it is a possibility that undergoes continual renegotiation.
Megan Warin (University of Adelaide)
Paper short abstract:
This paper examines the relationship between bodies, knowledge and education in a community named as obesogenic by a State government. Using Ingold's work on embodied skills, I critique the assumption that following disciplines of already formed nutritional knowledge will result in the 'good life'.
Paper long abstract:
This paper examines the relationship between bodies, knowledge and education in a community identified as obesogenic by a State government and State led public health intervention. In public health circles and public understandings it is assumed that obesity results from lack of knowledge about the right things to eat or how to take care of oneself, leading to chronic conditions like diabetes and cardiovascular disease. It is thought that education will fill this knowledge lacunae, and most public health campaigns have education as the main platform of information dissemination to enact behavioural change. Based on long-standing ethnographic work in a community that experiences significant disadvantage, I explore the limits of nutrition education, and how constructing people as having deficit knowledge about the risks of obesity and chronic disease has the unwarranted effect of implying ignorance. Key to my analysis is Ingold's articulation of different modalities of education, one dominant mode which inducts people into rules and regulations of already pre-formed knowledge, and another which sees education as embodied learning that goes on in the doing of everyday environments. In conclusion, I argue that people do not learn the art of a good life through reflexive consciousness of what they should eat, but through practical engagements and unfolding of everyday improvisation, movement and sensory awareness of foods, eating and bodies.
Heather Howard (Michigan State University)
Paper short abstract:
This paper examines the lived experiences of patients who have turned to bariatric surgery to resolve diabetes. It focuses on shifting states of responsibility and choice as these are embedded in and extend relations of care, and are animated by moral economies of biocitizenship.
Paper long abstract:
People with type 2 diabetes who are also obese are doubly marked as "bad biocitizens" (Greenhalgh and Carney 2014). Intervening on conditions that involve self-management and so-called lifestyle change by individuals, bariatric surgery is appealing for its power to both circumvent and boost individual agency, aligning with a variety of perspectives on control, responsibility, and choice in chronic disease prevention and management. Based on ethnographic research with the diabetic patients of a weight management clinic in the United States, this paper explores bariatric surgery as a treatment for diabetes in the context of moralistic neoliberal rhetorics of fear that predominate healthcare ideologies in which chronic illness sufferers imperil society with an escalating epidemic. Now readily conducted through a laparoscopic procedure, the surgery is framed as quick, safe and cost-effective. It offers not only the potential to heroically slay major public health threats, saving many from affliction. It also promises to slash the substantial "burden on society" of the billions of dollars in annual costs measured in healthcare consumption and lost productivity. Patients and their providers are morally responsiblized to pursue the surgery in order to unburden patients as well as the public from the liability they place on the health care system. This paper examines the lived experiences of these shifting states of responsibility and choice as they are embedded in and extend relations of care, and are animated by and with the politics of healthcare systems and the moral economies of biocitizenship.
Debbi Long (University of Newcastle)
Paper short abstract:
This paper explores the intersection of biomedical and actuarial paradigms in the context of Australian injury insurance and compensation schemes, and the impact of these paradigms on people disabled through traffic or workplace injury.
Paper long abstract:
In Australia, accident and injury insurance and compensation schemes are subject to complicated and at times contradictory rafts of state and federal legislation. Within this complex legislative environment, resources needed by people who have been injured are subject to biomedical and organisational gatekeeping. While reductionist biomedical and insurance paradigms can speak quite comfortably with each other, they are often unable to articulate well with the complex needs of people with ongoing disability acquired as a result of an injury. Bodies, especially injured bodies, are dynamic. They change and shift over time in ways that injury compensation schemes sometimes struggle to accommodate. Injured bodies are situated within networks of families, friends and co-workers. Biomedical and actuarial frameworks posited around autonomously individuated clients are structurally unable to take account of some aspects of their clients' needs. This paper explores some of the structural barriers to care created by biomedical and actuarial paradigms, and some of the ways in which organisations in the Australian insurance and compensation industry are attempting to address these barriers.
Paul Mason (Macquarie University)
Paper short abstract:
Infections considered acute in high-income countries persist as chronic causes of mortality in low- and middle-income countries. The ever-widening experiences of chronic illnesses such as obesity and diabetes serve to compound and complicate the disease course of treatable infections.
Paper long abstract:
This presentation takes tuberculosis as a case example to explore acuteness and chronicity in conceptualisations of health and illness. Prior to the antibiotic era, the epidemiology of tuberculosis disease shifted from being a global burden to a problem concentrated in low- and middle-income countries. Socio-economic improvements in high-income countries helped reduce tuberculosis incidence without the need for sophisticated pharmacotherapy. The discovery of antimicrobials, however, skewed the globalisation of disease control efforts towards a singular focus on the production and distribution of standardised drug regimens. Pharmacological interventions created powerful institutional allies in the health sectors for drug manufacturers who supported industrialized production and developing new research programs and markets for their products, but these interventions did not reduce infection rates in a straightforward fashion. By the 1980s, the number of tuberculosis cases doubled in low- and middle-income countries. Moreover, economic growth in low- and middle-income countries after the availability of antimicrobials led to increasing prevalence of drug resistant tuberculosis, especially when public healthcare struggled and private healthcare thrived. The disintegration of the former Soviet Union, for example, contributed to steep rises in tuberculosis, particularly drug resistant disease, which emerged when failing health systems were no longer able to provide adequate treatment. Today, more than 9 million people globally become sick with tuberculosis each year. For more than 1.5 million of these patients, it is a chronic, and ultimately mortal, infection. Compounding this situation is the spread of obesity and diabetes, which have changed both the look and feel of tuberculosis.