Dr Emilija Zabiliute from our Department of Anthropology shares insights from her research into support and care for diabetes patients in Delhi.
Public health policies associate diabetes with lifestyle and emphasise individual responsibility of patients to care for themselves. But to associate chronic disease with lifestyle, and to find feasible and nuanced public health advise, we first need to understand everyday lives of those with a disease, and what care means to them and their families.
Diabetes, one of the most common chronic illnesses, is widely linked with unhealthy lifestyles and unhealthy modern diets. Public discourses often associate diabetes with excesses and wealth, as well as the detrimental effects of modern life on human bodies.
In a popularised epidemiological transition model, for instance, societies face an increasing burden of chronic illness once they reach a certain level of industrialisation, as well as higher living standards. Yet, diabetes is not only affecting richer parts of the world, more affluent sections of societies, and those having sedentary office jobs. On the contrary, it is increasingly common in the countries of the Global South and among the poor. Indeed, as social scientists have shown, it is the same process of colonial dispossession and violence that has made certain regions and populations not only poorer, but also sicker with chronic illness. Poverty, too, includes numerous social conditions that pave the way for increased risk of diabetes and its complications.
In tackling diabetes as a public health challenge, various explanations and policy approaches exist. Numerous preventative public health initiatives seek to motivate people for being physically active and make healthy food choices to avoid diabetes or keep it in control and avoid serious complications. The emphasis is usually on choice and lifestyle.
However, both, lifestyle and choice depend on and change in diverse social contexts. Choice, for instance, reflects the logics of markets, in which people choose as individual consumers. Yet those marginalised in a society have limited possibility to choose. Lifestyle advice then, would seem to be a more holistic approach to how one should live with a chronic illness. Yet, lifestyle is itself a narrow category, often reduced to choices people should make. People’s everyday lives are more complex and contingent than what ‘lifestyle’ implies: eliminating a particular food from the diet or increasing the number of steps walked in a day. There is more to care than specifically tailored lifestyle solutions.
My research examines and focuses on this expanded notion of life with a chronic illness beyond biomedical settings. I am interested in how care for diabetes in people’s everyday lives is incorporated into larger undertakings of kinship care and relational moral worlds.
In Northern India, such ethics is often referred to as seva – moral service for the family, especially the elders. Often, care for chronic illness and care for family overlap. In their daily lives, people do not make distinctions if they care for someone because of diabetes or because they have moral, relational seva obligations to them. Possibilities to take up the health advise are intertwined with these relational responsibilities. And when people face difficulties of care, such as tensions around food, medication access or doctor visits, they are often relational and linked to how people envision ethical life with others and its limits.
Finally, among the poor, who rely on family care due to lack of access to healthcare, those familial care dilemmas shape the reality of their experience of chronic illness. By paying attention to the expansive situated meanings of care and its ethics, we can better understand care needs for diabetes patients.
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