Skip to main content
SpringerLink
Log in

The Vitality of Disease

  • Chapter
The Palgrave Handbook of Biology and Society

Abstract

In recent decades, social scientists have carried out empirical studies in the laboratories, clinics and patient associations within and through which biological knowledge, biomedical practice, biosocialities and biological citizens are being co-produced. In this chapter, I sketch a novel analytics of what we might be conceptualised as the vitality of disease. Medical interventions are increasingly as much about improving (quality of) life as they are about saving and prolonging life. As a consequence, morbid living has come to be disciplined, for example, in patient schools aimed at teaching patients to learn how to live with their disease, through rating scales used to measure treatment effect on the ‘quality of life’ of patients in clinical trials and through disease-specific ‘Living with’ guides aimed at patients and carers.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 129.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 169.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 239.00
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

Notes

  1. 1.

    Small sections of this article have appeared as an entry on the Somatosphere blog (http://somatosphere.net/2014/11/knowledge-of-living.html). I thank the editor for permission to reproduce these sections.

  2. 2.

    Tip: Type ‘Living with…’ followed by almost any disease into a search engine and see what happens.

Literature

  • Agamben, Giorgio. 1998. Homo Sacer: Sovereign Power and Bare Life. Stanford: Stanford University Press.

    Google Scholar 

  • Alzheimer Association.2012. Livet med demens [Living with dementia]. Accessed 10 October 2012. http://www.alzheimer.dk/raad/livet-med-demens

  • Alzheimer’s Society. 2012. The Dementia Guide: Living Well After Diagnosis. London.

    Google Scholar 

  • Armstrong, David, and Rachel Caldwell. 2004. Origins of the Concept of Quality of Life in Health Care: A Rhetorical Solution to a Political Problem. Social Theory & Health 2: 361–371.

    Article  Google Scholar 

  • Biehl, Joao, and Adriana Petryna, eds. 2013. When People Come First: Critical Studies in Global Health. Princeton, NJ: Princeton University Press.

    Google Scholar 

  • Brooks, Ricahrd. 2013. The EuroQol Group after 25 Years. Berlin: Springer.

    Book  Google Scholar 

  • Callon, Michel, and Vololona Rabeharisoa. 2008. The Growing Engagement of Emergent Concerned Groups in Political and Economic Life: Lessons from the French Association of Neuromuscular Disease Patients. Science, Technology, & Human Values 33 (2): 230–261.

    Article  Google Scholar 

  • Camic, Charles, Neil Gross, and Lamont Michele. 2011. Social Knowledge in the Making. Berkeley: University of California Press.

    Book  Google Scholar 

  • Campbell, David. 2014. NHS Could Be ‘Overwhelmed’ by People with Long-Term Medical Conditions. The Guardian, January 3, sec. Society. Accessed 15 January 2014. http://www.theguardian.com/society/2014/jan/03/nhs-overwhelmed-long-term-medical-conditions

  • ———. 1994. A Vital Rationalist: Selected Writings from Georges Canguilhem. New York: Zone Books.

    Google Scholar 

  • ———. 2008. Knowledge of Life. New York: Fordham University Press.

    Google Scholar 

  • ———. 2012. Writings on Medicine. Trans. Stefanos Geroulanos and Todd Meyers. 2nd ed. New York: Fordham University Press.

    Google Scholar 

  • Carlens, E., Gunnar Dahlström, and Enn Nou. 1971. An Attempt to Include “Quality of Life” in Evaluation of Survival in Bronchial Cancer Therapy. Bronches 21: 215–219.

    Google Scholar 

  • Clarke, Adele E., Laura Mamo, Jennifer Ruth Fosket, Jennifer R. Fishman, and Janet K. Shim. 2009. Biomedicalization: Technoscience, Health, and Illness in the U.S. Durham, NC: Duke University Press.

    Book  Google Scholar 

  • Collier, Stephen J., and Andrew Lakoff. 2007. On Regimes of Living. In Global Assemblages, ed. Aihwa Ong and Stephen J. Collier, 22–39. Malden, MA: Blackwell Publishing Ltd.

    Chapter  Google Scholar 

  • Dokumaci, Arseli. 2014. Performance as Evidence in Chronic Disease: Measuring Health Status and Treatment Outcomes through the Quantification of Performance. Performance Research: A Journal of the Performing Arts 19 (4): 14–23.

    Article  Google Scholar 

  • Dumit, Jo. 2012. Drugs for Life: How Pharmaceutical Companies Define Our Health. Durham: Duke University Press.

    Book  Google Scholar 

  • Epstein, Stephen. 1998. Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkeley: University of California Press.

    Google Scholar 

  • Evans-Pritchard, Evans E. 1937. Witchcraft, Oracles and Magic Among the Azande. Oxford: Clarendon Press.

    Google Scholar 

  • Fanshel, S., and J.W. Bush. 1970. A Health-status Index and Its Application to Health Services Outcomes. Operations Research 18 (6): 1021–1066.

    Article  Google Scholar 

  • Fassin, Didier. 2009. Another Politics of Life Is Possible. Theory, Culture & Society 26 (5): 44–60.

    Article  Google Scholar 

  • ———. 1995. Discipline & Punish: The Birth of the Prison. Trans. Alan Sheridan. 2nd ed. New York: Vintage Books.

    Google Scholar 

  • Franklin, Sarah. 2000. Life Itself—Global Nature and the Genetic Imaginary. In Global Nature, Global Culture, ed. S. Franklin, C. Lury, and J. Stacey, 188–227. London: Sage.

    Chapter  Google Scholar 

  • Geroulanos, Stefanos, and Todd Meyers. 2012. Introduction. In Writings on Medicine. Trans. Stefanos Geroulanos and Todd Meyers, ed. Georges Canguilhem, 2nd ed. New York: Fordham University Press.

    Google Scholar 

  • Gibbon, Sahra, and Carlos Novas, eds. 2008. Biosocialities, Genetics and the Social Sciences: Making Biologies and Identities. London: Routledge.

    Google Scholar 

  • Gold, Marthe, David Stevenson, and Dennis Fryback. 2002. HALYS and QALYS and DALYS, Oh My: Similarities and Differences in Summary Measures of Population Health. Annual Review of Public Health 23: 115–134.

    Article  Google Scholar 

  • Greene, Jeremy. 2007. Prescribing by Numbers: Drugs and the Definition of Disease. Baltimore: Johns Hopkins University Press.

    Google Scholar 

  • Herper, Matthew, and Peter Kang. 2006. The World’s Ten Best-Selling Drugs. Forbes. Accessed 10 February 2013. http://www.forbes.com/2006/03/21/pfizer-merck-amgen-cx_mh_pk_0321topdrugs.html

  • Hvidovre Hospital. 2010. Efterbehandling i Kardiologisk Klinik—Hjerterehabilitering. Hvidovre: Hvidovre Hospital.

    Google Scholar 

  • Illich, Ivan. 1976. Limits to Medicine: Medical Nemesis, the Expropriation of Health. London: Boyars.

    Google Scholar 

  • Janzen, Jonathan M. 1978. The Quest for Therapy in Lower Zaire. Berkeley: University of California Press.

    Google Scholar 

  • Karnofsky, David A., and John H. Burchenal. 1949. The Clinical Evaluation of Chemotherapeutic Agents in Cancer. In Evaluation of Chemotherapeutic Agents, ed. MacLeod CM, 196–198. New York: Columbia University of Press.

    Google Scholar 

  • Kleinman, Arthur. 1980. Patients and Healers in the Context of Culture. Berkeley: University of California Press.

    Google Scholar 

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

    Google Scholar 

  • Kleinman, Arthur, and Joan Kleinman. 1996. The Appeal of Experience; The Dismay of Images: Cultural Appropriations of Suffering in Our Times. Daedalus 125 (1): 1–23.

    Google Scholar 

  • Lakoff, Andrew. 2007. The Right Patients for the Drug: Managing the Placebo Effect in Antidepressant Trials. BioSocieties 2 (1): 57–71.

    Article  Google Scholar 

  • Lindsay, Sally, and Hubertus J.M. Vrijhoef. 2009. A Sociological Focus on ‘Expert Patients’. Health Sociology Review 18 (2): 139–144.

    Article  Google Scholar 

  • Lippman, Abby. 1993. Prenatal Genetic Testing and Geneticization: Mother Matters for All. Fetal Diagnosis and Therapy 8 (suppl 1): 175–188.

    Article  Google Scholar 

  • Lock, Margaret. 2013. The Alzheimer Conundrum: Entanglements of Dementia and Aging. Princeton: Princeton University Press.

    Google Scholar 

  • ———. 2015. Comprehending the Body in the Era of the Epigenome. Current Anthropology 56 (2): 151–177.

    Article  Google Scholar 

  • MandagMorgen. 2011. Kommuner og Kronikere: Bedre Pleje og Behandling i Eget Hjem. Copenhagen: Rosendahls.

    Google Scholar 

  • Manderson, Leonore, and Carolyn Smith-Morris, eds. 2010. Chronic Conditions, Fluid States: Chronicity and the Anthropology of Illness. New Brunswick: Rutgers UP.

    Google Scholar 

  • Mattingly, Cheryl. 1998. Healing Dramas and Clinical Plots: The Narrative Structure of Experience. Cambridge: Cambridge University Press.

    Book  Google Scholar 

  • Mattingly, Cheryl, Lone Grøn, and Lotte Meinert. 2011. Chronic Homework in Emerging Borderlands of Healthcare. Culture, Medicine, and Psychiatry 35 (3): 347–375.

    Article  Google Scholar 

  • Meloni, Maurizio, and Giuseppe Testa. 2014. Scrutinizing the Epigenetics Revolution. BioSocieties 9: 431–456.

    Google Scholar 

  • Meloni, Maurizio, Simon Williams, and Paul Martin. 2016. The Biosocial: Sociological Themes and Issues. The Sociological Review Monographs 64 (1): 7–25.

    Article  Google Scholar 

  • MoH. 2002. Sund hele livet [Healthy for Life]. Danish Government. Copenhagen: Ministry of Health.

    Google Scholar 

  • Mol, Anne Marie. 2002. The Body Multiple: Ontology in Medical Practice. Durham: Duke University Press.

    Book  Google Scholar 

  • ———. 2008. The Logic of Care: Health and the Problem of Patient Choice. Milton Park, Oxford: Routledge.

    Google Scholar 

  • Mol, Anne Marie, Ingunn Moser, and Jeannette Pols. 2015. Care in Practice: On Tinkering in Clinics, Homes and Farms. Bielefeld: Verlag.

    Google Scholar 

  • Moreira, Tiago, Orla O’Donovan, and Etaoine Howlett. 2014. Assembling Dementia Care: Patient Organisations and Social Research. BioSocieties 9 (2): 173–193.

    Article  Google Scholar 

  • Novas, Carlos. 2006. The Political Economy of Hope: Patients’ Organizations, Science and Biovalue. BioSocieties 1 (3): 289–305.

    Article  Google Scholar 

  • Patrick, Donald L., and Peniffer Erickson. 1993. Health Status and Health Policy: Quality of Life in Health Care Evaluation and Resource Allocation. New York: Oxford University Press.

    Google Scholar 

  • Petryna, Adriana. 2002. Life Exposed: Biological Citizens after Chernobyl. Princeton: Princeton University Press.

    Google Scholar 

  • ———. 2007. Clinical Trials Offshored: On Private Sector Science and Public Health. BioSocieties 2 (1): 21–40.

    Article  Google Scholar 

  • Pickersgill, Martin, Jörg Niewöhner, Ruth Müller, Paul Martin, and Sarah Cunningham-Burley. 2013. Mapping the New Molecular Landscape: Social Dimensions of Epigenetics. New Genetics and Society 32 (4): 429–447.

    Article  Google Scholar 

  • Rabeharisoa, Vololona, and Michel Callon. 2002. The Involvement of Patients’ Associations in Research. International Social Science Journal 54 (171): 57–63.

    Article  Google Scholar 

  • Rabeharisoa, Vololona, Tiago Moreira, and A. Akrich. 2014. Evidence-based Activism: Patients’, Users’ and Activists’ Groups in Knowledge Society. BioSocieties 9 (2): 111–128.

    Article  Google Scholar 

  • Rabinow, Paul. 1996. Essays on the Anthropology of Reason. Princeton, NJ: Princeton University Press.

    Google Scholar 

  • Rajan, Kaushik Sunder. 2006. Biocapital: The Constitution of Postgenomic Life. Durham: Duke University Press.

    Book  Google Scholar 

  • Rivers, William H.R. 1924. Medicine, Magic and Religion. London: Kegan Paul, Trench, Trubner.

    Google Scholar 

  • Roberts, Elizabeth F.S. 2015. Bio-Ethnography: A Collaborative, Methodological Experiment in Mexico City. Somatosphere, 26 February 2015. Accessed 7 February 2017. http://somatosphere.net/2015/02/bio-ethnography.html

  • Rosenberg, C., and J. Golden. 1992. Framing Disease: Studies in Cultural History. New Brunswick: Rutgers University Press.

    Google Scholar 

  • Round, Jerome. 2012. Is a QALY Still a QALY at the End of Life? Journal of Health Economics 31 (3): 521–527.

    Article  Google Scholar 

  • Rose, Nikolas. 2007. The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century. Princeton: Princeton University Press.

    Book  Google Scholar 

  • Rose, Nikolas, and Carlos Novas. 2005. Biological Citizenship. In Global Assemblages: Technology, Politics and Ethics as Anthropological Problems, ed. A. Ong and S. Collier, 439–464. Malden, MA: Blackwell.

    Google Scholar 

  • Steffen, Vibeke, Hanne Jessen, and Richard Jenkins, eds. 2005. Managing Uncertainty. Ethnographic Studies of Illness, Risk, and the Struggle for Control. Copenhagen: Museum Tusculanums Press.

    Google Scholar 

  • Taylor, D., and M. Bury. 2007. Chronic Illness, Expert Patients and Care Transition. Sociology of Health & Illness 29 (1): 27–45.

    Article  Google Scholar 

  • Villadsen, Kaspar, and Ayo Wahlberg. 2015. The Government of Life: Managing Populations, Health and Scarcity. Economy and Society 44 (1): 1–17.

    Article  Google Scholar 

  • Wahlberg, Ayo. 2007. Measuring Progress: Calculating the Life of Nations. Distinktion: Scandinavian Journal of Social Theory 14: 65–82.

    Article  Google Scholar 

  • ———. 2008. Above and Beyond Superstition: Western Herbal Medicine and the Decriminalising of Placebo. History of the Human Sciences 21 (1): 77–101.

    Article  Google Scholar 

  • ———. 2009. Serious Disease as Kinds of Living. In Contested Categories: Life Sciences in Society, ed. S. Bauer and A. Wahlberg, 89–112. Burlington: Ashgate.

    Google Scholar 

  • Wahlberg, A. 2014. Human Activity Between Nature and Society: The Negotiation of Infertility in China. In Anthropology and Nature, ed. K. Hastrup, Chap. 11, 184–195.

    Google Scholar 

  • Wahlberg, Ayo, and Nikolas Rose. 2015. The Governmentalization of Living: Calculating Global Health. Economy and Society 44 (1): 60–90.

    Article  Google Scholar 

  • WHO. 1998. Therapeutic Patient Education: Continuing Education Programmes for Health Care Providers in the Field of Prevention of Chronic Diseases. Report of a WHO Working Group. Geneva: WHO.

    Google Scholar 

  • WHO. 2008. 2008–2013 Action Plan for the Global Strategy for the Prevention and Control of Noncommunicable Diseases. Geneva: WHO Press.

    Google Scholar 

  • Williams, Simon, Jonathan Gabe, and Peter Davis. 2009. Pharmaceuticals and Society: Critical Discourses and Debates. Chichester: John Wiley & Sons.

    Google Scholar 

  • Whyte, Susan R. 2012. Chronicity and Control: Framing ‘Noncommunicable Diseases’ in Africa. Anthropology & Medicine 19 (1): 63–74.

    Article  Google Scholar 

  • ———., ed. 2014. Second Chances: Surviving AIDS in Uganda. Durham: Duke University Press.

    Google Scholar 

Download references

Acknowledgments

I would like to thank the editors for comments which have improved this chapter considerably. The chapter was prepared within the framework of the European Research Council grant ‘The Vitality of Disease—Quality of Life in the Making’ (Grant no. 639275).

Author information

Authors and Affiliations

  1. Department of Anthropology, University of Copenhagen, Copenhagen, Denmark

    Ayo Wahlberg

Authors
  1. Ayo Wahlberg
    View author publications

    You can also search for this author in PubMed Google Scholar

Editor information

Editors and Affiliations

  1. Department of Sociological Studies, University of Sheffield, Sheffield, UK

    Maurizio Meloni

  2. School of Management, University of Leicester, Leicester, UK

    John Cromby

  3. Cardiff University, Cardiff, UK

    Des Fitzgerald

  4. Department of Anthropology, Laval University, Québec, Canada

    Stephanie Lloyd

Copyright information

© 2018 The Author(s)

About this chapter

Cite this chapter

Wahlberg, A. (2018). The Vitality of Disease. In: Meloni, M., Cromby, J., Fitzgerald, D., Lloyd, S. (eds) The Palgrave Handbook of Biology and Society. Palgrave Macmillan, London. https://doi.org/10.1057/978-1-137-52879-7_31

Download citation

  • DOI: https://doi.org/10.1057/978-1-137-52879-7_31

  • Publisher Name: Palgrave Macmillan, London

  • Print ISBN: 978-1-137-52878-0

  • Online ISBN: 978-1-137-52879-7

  • eBook Packages: Social SciencesSocial Sciences (R0)

Publish with us

Policies and ethics

Search

Navigation