Medical Humanities Lexicon: Social Construction of Disease
Today's entry in the Lexicon is the social construction of disease. Readers familiar with the Lexicon entries on medicalization and the social model of disability will find much overlapping conceptual terrain.
What is disease? What is a disease? One might surmise that these are easy questions. Take cholera, to use an important disease in the history of public health. What is the disease of cholera? An obvious answer is "the vibrio cholerae bacillus." But vibrio is the name of the bacterium that causes the disease of cholera. The premise that vibrio is a necessary condition for cholera does not necessarily imply that the disease of cholera itself literally is the condition. To argue this would be to challenge the notion of causal sequelae itself, to conflate what we ordinarily conceive of as the relation of cause (vibrio) and effect (cholera). The fact that some who carry vibrio bacteria do not develop symptoms of cholera is further proof of the existence of some kind of meaningful distinction between the microorganismal agent and the phenomenon of disease itself.
Well, if cholera is not simply vibrio, then what is the disease of cholera? Perhaps it is the symptoms of cholera. Is the notorious rice-water diarrhea caused by toxins produced by vibrio bacteria the disease of cholera? But to argue this is to make the classic mistake of conflating property with definition (those able readers already doubting the essentialist notion of a "definition" of disease needs be patient -- I'm getting there). That is, to say that water has the property of wetness is assuredly not to say that water is defined by wetness. The symptoms or properties of cholera are not equivalent to the definition of cholera. Even if we are (rightly) suspicious of the notion of a definition of the disease of cholera, it certainly doesn't seem valid to treat the properties of the disease as their definition.
This is a blog post, not an essay, so I will unfortunately suspend the thought experiment right there. Hopefully, even this most cursory of examinations should demonstrate that defining disease is much more difficult than might appear at first blush. More specifically, one can already see significant problems with defining disease solely in terms of biology. Even a superficial look shows that disease is experienced by people, and people are social creatures, enmeshed in a variety of social constructs and contexts -- family, culture, spirituality, occupation, and so on and so forth. Even if we could define disease solely in terms of its biology, it seems indisputable that we experience disease as social beings. And even if there is an essential definition of disease, the phenomenon of disease cannot reasonably be said to be purely biological. Disease, in other words, is a social phenomenon. It is, in part, socially constructed.
Numerous theorists -- chiefly but not exclusively social scientists (historians, anthropologists, sociologists, psychologists, etc) have begun to take as a point of departure that disease is in part socially constructed. This does not necessarily imply that disease is not real. Many commentators (Rosenberg, Latour, Kuhn, depending on how he is interpreted) argue both that the phenomenon of disease is socially constructed and that it is nevertheless real, and there are facts. (These are, naturally, not uncontroverted claims, but I do not think these claims are logically inconsistent, at least). The basic argument itself is simply that how individuals and communities experience a disease is affected by their weltanschauung, how they frame and view the world.
Rosenberg's Cholera Years is a classic demonstration of this, and Johnson's more recent contribution (the Ghost Map) makes a similar point in different ways. Briefly, prior to the germ theory, the prevailing Western conception of disease and etiology was based on the miasmatic theory, which linked disease to filth. Given the changing demographics, particularly in the U.S., throughout the middle and late decades of the 19th century, it is unsurprising that many of the immigrant communities were closely linked with the disease. It did not help that the conditions of the Industrial Revolution engendered dangerous, dirty occupational activity, nor that many immigrants were poor and did live in difficult, sometimes squalid conditions.
The miasmatic theory was engaged, in a dialectical sense, with different and varied social contexts, ideas, and conditions. The age-old connection between sin and suffering is another highly significant social influence in the constellation of cholera in the 19th century.
A more recent, and perhaps familiar example of the social construction of disease is AIDS. Even our name of the disease demonstrates the fallacy of biological reductionism (because HIV is to AIDS as vibrio is to cholera). Whatever one's political outlook, it is difficult to deny that it took considerable time for AIDS research to receive significant funding. Though correlation is not causation, more than a few have noted that the period of comparatively lower funding corresponds (at least chronologically) with the period when AIDS was conceived of primarily as a disease of gay men and drug abusers.
Sometimes, elements of the political economy (itself an obviously social phenomenon) can even affect the existence of disease. Consider the recent discourse of whether to eradicate the remaining stocks of smallpox virus. Concerns of bioterror and weaponized smallpox provided a strong incentive for humans to refrain from "eradicating" disease. If disease is in part socially constructed, it would seem to be advisable to analyze what it would mean to eradicate a disease.
However, there is heated debate over how far the proposition that the phenomenon of disease is in part socially constructed extends. It would seem to require a kind of radical skepticism* to deny that microorganisms play a causal role in infectious disease. As mentioned above, many notable commentators are realists about disease, i.e., they are committed to a belief about the biological influences on disease (and to the validity of truth conditions to notions of biological facts). To argue that disease is socially constructed is not equivalent to saying that disease is nothing but socially constructed.
The contours of disease are hardly settled, but the discourse itself is important for the medical humanist, IMO.
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Bibliography:
Rosenberg, Charles E. The Cholera Years. Chicago: University of Chicago Press, 1987. First Published in 1962.
Rosenberg, Charles E. Explaining Epidemics and Other Studies in the History of Medicine. Cambridge: Cambridge University Press, 1992.
Latour, Bruno. The Pasteurization of France. Translated by Alan Sheridan and John Law. Cambridge, MA: Harvard University Press, 1988.
Grmek, Mirko. History of AIDS: Emergence and Origin of a Modern Pandemic. Translated by Russell C. Maulitz and Jacalyn Duffin. Princeton: Princeton University Press, 1990.
Leavitt, Judith Walzer. Typhoid Mary: Captive to the Public's Health. Boston: Beacon Press, 1996.
Duffin, Jaclyn. Lovers and Livers: Disease Concepts in History. Toronto: University of Toronto Press, 2005.
Johnson, Steven. The Ghost Map. New York: Riverhead Books, 2006.
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