It is time we anthropologists of biomedicine broaden our analytical scope. If it is the case that there is more to life than DNA, cells, tissues and organs; that there is more to disease than mutations, dysregulations and dysfunctions, then how is it that social studies of medicine have attained such a bio bent in recent decades? Of course, medicine has itself in many ways become biomedicine through processes of biomedicalisation, molecularisation, geneticisation and pharmaceuticalisation, urging social scientists (including myself) into the laboratories, clinics and patient associations within and through which biological knowledge, biomedical practice, biosocial groupings and biological citizens are being formed, or co-produced. So, perhaps the bio-turn is merely a product of the times (hegemonies?) we are living in. Anthropologists (and other social scientists) of medicine might well protest at this point, especially those who study the lived experience of their informants as they fall ill and struggle to get better, devising coping strategies and mobilizing therapy support groups along the way. The only bio-turn to be found in these studies often concerns the chronic failures of biomedicine in terms of its availability, accessibility, quality, efficacy and relevance. We have learned how biomedicine is but one among many medical strategies pursued by the ill and also how stark inequalities continue to shape medical landscapes throughout the world.

Whatever views one might have on the bio-turn within social studies of medicine (including on whether there has been such a turn at all), there is one line of analytical pursuit which remains strikingly idle, namely the question of knowledge of living. Canguilhem once wrote: “Human life can have a biological meaning, a social meaning, and an existential meaning. In an assessment of the modifications that disease inflicts on the human being, all these meanings can equally be retained. A man does not live only like a tree or a rabbit” (2008:121-22). Point being: not only is life sustained, it is also lived. If Canguilhem’s archaeological readings of biologists and medical scientists have generated dizzying insights into the formation of “knowledge of life” in its biological meaning; what then of its social and existential meanings? I would suggest that the time is ripe for analyses of the ways in which knowledge of living – that is to say knowledge of living as a social activity and a personal experience – has come to be formed, as well as how it has transmogrified or spilled over into practices of living, and vice versa. For, alongside molecularisation and biomedicalisation, we have seen an upsurge in knowledge of how it is to live with disease – morbid living – a subset of what I have more broadly called knowledge of living. In distinguishing between knowledge of life and knowledge of living, I am not alluding to the distinction between ‘bare life’ (or zoe) and ‘qualified life’ (or bios), which has been extensively fleshed out by Agamben, Fassin, Biehl and many others who rightly point out that there is more to the politics of life than the bio prefix indexes. Neither am I pointing to the styles of ethical activity that make up contemporary ‘regimes of living’ (Lakoff & Collier 2004). Instead I am making a methodological distinction between how ‘knowledge of life’ and ‘knowledge of living’ is generated.

And this is where it can get a bit tricky since it is exactly (us) medical anthropologists who have been at the forefront when it comes to generating knowledge about morbid living. From Rivers onwards, anthropologists have researched the ways in which individuals and communities experience, cope with and tackle disease. They have shed light upon the struggles, tragedies and inventiveness of the ill as they seek therapy, meaning or restitution. Indeed, Kleinman has argued that the distinction between disease and illness was exactly intended to highlight an individual or community’s experience of living with disease: “Disease… is an alteration in biological structure or functioning” whereas “illness refers to how the sick person and the members of the family or wider social network perceive, live with, and respond to symptoms and disability” (Kleinman 1988: 3, 5-6). We need, I suggest, to study the productive effects of our own knowledge production practices as medical anthropologists – i.e. we need to be as attentive to the effects of interview techniques and observation as we have been to the effects of sonography or DNA amplification. We also need to archaeologically examine the key concepts of medical anthropology – not reflex, regulation or pathology, but rather coping, symbolic efficacy or coherence.

To be sure, I am not advocating some kind of history of medical anthropology, at least not solely. For, not only have we seen an upsurge in the production of knowledge about how it is to live with disease, we have also seen a swarming of practices aimed at working on the lives of those living with disease. Such practices include the ‘Living with’ guides that patient associations and others increasingly prepare to provide practical advice for how patients and loved ones can cope with the challenges of living with a particular disease (tip: type “Living with …” adding almost any disease into Google and see what happens). The internet has become an important resource for many patients and carers, with sites like WebMD, NHS Choices, PatientsLikeMe and NetDoctor providing patients with advice and the opportunity to share their experiences on how best to live with particular diseases and conditions. We have also seen the proliferation of so-called ‘expert patient’ courses or training programmes for the chronically ill offered by hospitals and community clinics which provide training in the proper intake of medicines, motivation for lifestyle modifications as well as counselling support. In addition, we have seen an influx of rating scales, indices and instruments that have been developed to calculate the impact a disease has on the quality of life and wellbeing of an individual or population, such as the QALY, EuroQol, DALY or Quality of Life Scale. And let us not write this off as a ‘Western’ phenomenon of the privileged. Efforts to improve the lives (as something further to saving lives, which nonetheless remains crucially urgent in these times of Ebola and grave health inequality) of those living with disease are to be found globally. For example, Whyte and colleagues (2014) and Nguyen (2010) have shown us how healthcare programmes in Uganda and Burkina Faso are not only biomedically treating HIV patients but also helping them to ‘live positively,’ as living with HIV in many parts of Africa today entails learning how to live with antiretroviral therapy, in many cases against all odds. What I am advocating is more social studies of the ways in which practices of morbid living intersect with knowledge of morbid living as they are co-produced in clinics, patient associations, homes, communities, GP consultations and more.

I am, of course, not the only one to have noted this blind spot within contemporary social studies of biomedicine. Rabeharisoa and colleagues recently put together an important special issue of BioSocieties on what they call ‘evidence based activism’ in which they argue that “patients’ organisations… collect experiences and build experiential knowledge, and that is how they give shape to concerned groups and delineate their preoccupations” (2014:115). More recently, Angela Martin and colleagues held Experience as Evidence? A Symposium on the Sciences of Subjectivity in Healthcare, Policy and Practice at the University of Oxford in October 2014 to explore “What does it take to turn experience into evidence? What new methods and expertise are emerging in this field?” I have myself contributed to this emerging field of social studies of the ways in which knowledge and practices of living come to be co-produced in a medical arena through publications including “Above and Beyond Superstition” (2008), “Measuring Progress” (2007) as well as a forthcoming piece (with Nikolas Rose) in Economy and Society entitled “Global Health and the Governmentalisation of Living”. More broadly, Charles Camic and colleagues have called for an expansion of STS attention to the social sciences by suggesting further studies of “the mundane actions and processes by which the makers of social knowledge carry out their work[,] … the daily routines of knowledge production, evaluation, and use” (2011: 8). I, for one, look forward to following this growing subfield (within STS and anthropology) as it unfolds and to contributing to those ‘social studies of’ – approaches which train analytical sights on the co-production of social science knowledge/practice in the medical field. We must attend to the effects of knowledge of living with the same commitment that the effects of knowledge of life have been cartographically and analytically pursued in recent decades.

 

Ayo Wahlberg is Associate Professor at the Department of Anthropology, University of Copenhagen, Denmark. His comparative research has focused on the different ways in which herbal medicine (in Vietnam and the United Kingdom), and more recently reproductive medicine (in China and Denmark), have been mobilized, normalized and routinized in the past few decades. He is co-editor of Contested Categories: Life Sciences in Society (2009) and Southern Medicine for Southern People: Vietnamese Medicine in the Making (2012) and has published numerous journal articles on the social study of herbal medicine, reproductive medicine and quality of life measurement.

 

References

Camic C, Gross N, & Lamont C. 2011. Social Knowledge in the Making. Berkeley: University of California Press.

Canguilhem G. 2008. Knowledge of Life. New York: Fordham University Press.

Kleinman A. 1988. The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books.

Lakoff A & Collier S. 2004. Ethics and the anthropology of modern reason. Anthropological Theory. 4(4): 419–434.

Nguyen VK. 2010. Republic of Therapy: Triage and Sovereignty in West Africa’s Time of AIDS. Durham: Duke University Press. pp. 89–110.

Rabeharisoa V, Moreira T, Akrich A.2014. Evidence-based activism: Patients’, users’ and activists’ groups in knowledge society. BioSocieties 9(2): 111–128.

Wahlberg A. 2007. Measuring progress – calculating the life of nations. Distinktion – Scandinavian Journal of Social Theory, 14, 65–82.

Wahlberg A. 2008. Above and beyond superstition – western herbal medicine and the decriminalizing of placebo. History of the Human Sciences 21 (1): 77–101.

Wahlberg A & Rose N. 2015. Global health and the governmentalisation of living. Economy and Society, in press.

Whyte SR (Ed). 2014. Second Chances: Surviving AIDS in Uganda. Durham: Duke University Press.