Today's entry in the Medical Humanities Lexicon is "Stigma." I think stigma is a particularly important term for the medical humanities, relevant to various disciplines including narrative studies, disability studies, history of medicine and public health, health policy, bioethics, etc, etc. While I have touched on the subject in several posts, I have not devoted an entry purely to "stigma," and the significance of the term for the medical humanities warrants such treatment.
What is stigma? The seminal analysis comes from sociologist Erving Goffman, who characterizes stigmatization as a social process consisting of two component parts: first, a marking out of a class of persons as different, and second, an establishment of deviance with the class. That is to say, there is always a negative assessment with any kind of stigma, a notion of deviance and unacceptability. This second aspect is particularly important because there is no inherent conceptual reason why difference must imply deviance. It is entirely possible to accept differences in characteristics or preferences without thereby attaching negative assessments to those differences. For example, I can accept that John prefers strawberry ice cream and Jane prefers chocolate ice cream without viewing that difference negatively.
However, assessments of deviance are not possible unless the particular subjects deemed to be deviant can be conceptually marked out and separated from the observer. Thus the first element of stigma is a prerequisite for its occurrence, even while the second element (deviance) is what distinguishes stigma from classifications that strike many as mild if oversimplified heuristics.
Why is stigma particularly relevant to the medical humanities? There are many reasons. First, as Drew Leder points out, the very experience of illness is exilic in nature; it frequently, if not always marks out the illness sufferer as different, from both the perspective of the sufferer and from caregivers and strangers, as well. In a very real sense, then, the illness experience itself often if not always fulfills the first element of stigma because it marks out the illness sufferer in some meaningful ways. This is not to suggest that the illness experience is necessarily solipsizing, because illness sufferers often band together to form communities. But the point is that the need to do so is often fueled by a sense of alienation from forms of life that had previously felt wholly comfortable to the illness sufferer.
Second, and related, social responses to disease are, lamentably, all-too-frequently stigmatizing in nature. The most obvious example of this is the AIDS epidemic, but such stigmatization so frequently accompanies infectious disease in particular, at least in Western history, that the narrative would become boring were it not so tragic. From the massacres of Jews during the Black Death to the nativist movements of the 19th century (which often accused Irish immigrants of spreading cholera and typhoid fever, culminating in the incarceration of Mary Mallon) to the attitudes towards Andrew Speaker, the association is pervasive.
Why is stigma so intimately connected with illness and disability? There are many plausible answers to this question, but the one I find most compelling posits that we mark out illness sufferers as different out of a kind of existential fright. Disease is threatening to us, as it reminds us of our own mortality (it should be easy to see why infectious disease is even more threatening). This is partly why so many dislike or feel uncomfortable around hospitals, IMO, because it is associated so strongly for so many with disease and death. We instinctively withdraw or recoil from illness sufferers out of this kind of existential fear.
This, so far as it goes, explains difference but not deviance. Why is it so common, not just to mark out illness sufferers as different, but to mark them as deviant? In a prior Lexicon post on "theodicy" (relevant here), I proffered one of my favorite quotes from Nietzsche, which I deem of assistance in answering this question:
“[t]he meaninglessness of suffering, not suffering itself, was the curse that lay over mankind so far . . . .”
What marking the illness sufferer as deviant accomplishes is meaning-making. Believing that disease and death are random and arbitrary strikes many as nihilistic and meaningless. How can there be justice in a world where cherished persons are made to suffer and die for no reason whatsoever? As Harold Kushner puts it, why DO bad things happen to good people?
The need to find some kind of meaning in the face of illness, suffering, and death is inescapable, I think, for the vast majority of people. One of the oldest and most effective meaning-making tropes, IMO, is to link the illness with desert. This person is ill because of their conduct -- because they smoked, because they were intemperant, because they lived to close to power lines, because they ate too many hamburgers, because they engaged in promiscuous behavior, because they did not exercise enough, ad infinitum.
By seeing illness as a function of desert, meaning is found in the process of suffering. Suffering and illness are not random and arbitrary; they can be traced to specific events and choices in people's lives. The implication, of course, is that if "I" live my life correctly -- if I don't smoke, drink too much, live near power lines, eat too many hamburgers, engage in promiscuity, or avoid exercise, I can prevent disease and death. Under this analysis, stigmatizing is a kind of social adaptation, a way of assuaging our existential fear in the face of disease and death.
In any case, this is an extremely crude sketch both of stigma in general, and of why such stigma seems so lamentably common in the face of disease and health care. But the consequences of such stigma are nothing short of devastating, both on an individual and a social level. The key for the medical humanist, then, is both to recognize stigma where it occurs, to formulate some understandings or at least some opinion about why any given instance of stigmatization is taking place, and then, IMO, to take remedial measures. What such remedial measures might consist of is, unfortunately, a post for another day.
Sontag, Susan. Illness as Metaphor and AIDS and its Metaphors. New York: Picador Press, 1989.
Nietzsche, Friedrich. On the Geneology of Morals. Translated by Walter Kauffman & RJ Hollingdale. New York: Random House, 1989.
Leder, Drew. "Illness and Exile: Sophocles' Philoctetes" Literature and Medicine Vol. 9 (1990): 1-11.
Goffman, Erving. Stigma: Notes on the Management of Spoiled Identity. New York: Simon & Schuster, 1963.
The Disability Studies Reader, ed. Lennard J. Davis. New York: Routledge, 1997.
Alonza, A.A., and Reynolds, N.R., "Stigma, HIV and AIDS: An Exploration and Elaboration of a Stigma Trajectory," Social Science & Medicine Vol. 41, no. 3 (1995): 303-15.