What can we learn from disease stigma’s long history?
Sara Gorman from Harvard University takes a look at the history of infectious disease stigma.
Although tremendous strides in fighting stigma and discrimination against people with HIV/AIDS have been made since the beginning of the epidemic, cases of extreme discrimination still find their way into the US court system regularly. Just this year, a man in Pennsylvania was denied a job as a nurse’s assistant when he revealed his HIV status to his employer. Even more appallingly, HIV-positive individuals in the Alabama and South Carolina prison systems are isolated from other prisoners, regularly kept in solitary confinement, and often given special armbands to denote their HIV-positive status. On a global level, HIV stigma can lead to difficulty accessing testing and healthcare, which will almost certainly have a substantial impact on the quality of an individual’s life. Legal recourse often rights these wrongs for the individual, but this kind of discrimination leads to the spread of false beliefs about transmission, the very driver of stigma. In the U.S., as of 2009, one in five Americans believed that HIV could be spread by sharing a drinking glass, swimming in a pool with someone who is HIV-positive, or touching a toilet seat.
Discrimination against people with HIV/AIDS is probably the most prominent form of disease stigma in the late 20th and early 21st centuries. But disease stigma has an incredibly long history, one that spans back to the medieval period’s panic over leprosy. Strikingly, in nearly every stage of history in reference to almost every major disease outbreak, one stigmatizing theme is constant: disease outbreaks are blamed on a “low” or “immoral” class of people who must be quarantined and removed as a threat to society. These “low” and “immoral” people are often identified as outsiders, on the fringes of society, including foreigners, immigrants, racial minorities, and people of low socioeconomic status.
Emerging infectious diseases in their early stages, especially when modes of transmission are unknown, are especially vulnerable to stigma. Consider the case of polio in America. In the early days of the polio epidemic, although polio struck poor and rich alike, public health officials cited poverty and a “dirty” urban environment as major drivers of the epidemic. The early response to polio was therefore often to quarantine low-income urban dwellers with the disease.
The 1892 outbreaks of typhus fever and cholera in New York City are two other good examples. These outbreaks were both blamed on Jewish immigrants from Eastern Europe. Upon arriving in New York, Jewish immigrants, healthy and sick, were quarantined in unsanitary conditions on North Brother Island at the command of the New York City Department of Health. Although it is important to take infectious disease control seriously, these measures ended up stigmatizing an entire group of immigrants rather than pursuing control measures based on sound scientific principles. This “us” versus “them” dynamic is common to stigma in general and indicates a way in which disease stigma can be viewed as a proxy for other types of fears, especially xenophobia and general fear of outsiders.
The fear of the diseased outsider is still pervasive. Until 2009, for instance, HIV-positive individuals were not allowed to enter the United States. The lifting of the travel ban allowed for the 2012 International AIDS Conference to be held in the United States for the first time in over 20 years. The connection between foreign “invasion” and disease “invasion” had become so ingrained that an illness that presented no threat of transmission through casual contact became a barrier to travel.
What can we learn from this history? Stigma and discrimination remain serious barriers to care for people with HIV/AIDS and tuberculosis, among other illnesses. Figuring out ways to reduce this stigma should be seen as part and parcel of medical care. Recognizing disease stigma’s long history can give us insight into how exactly stigmatizing attitudes are formed and how they are disbanded. Instead of simply blaming the ignorance of people espousing stigmatizing attitudes about certain diseases, we should try to understand precisely how these attitudes are formed so that we can intervene in their dissemination.
We should also be looking to history to see what sorts of interventions against stigma may have worked in the past. How are stigmatizing attitudes relinquished? Is education the key, and if so, what is the most effective way of disseminating this kind of knowledge? How should media sources depict epidemiological data without stirring fear of certain ethnic, racial, or socioeconomic groups in which incidence of a certain disease might be increasing? How can public health experts and clinicians be sure not to inadvertently place blame on those afflicted with particular illnesses? Ongoing research into stigma should evaluate what has worked in the past. This might give us some clues about what might work now to reduce devastating discrimination that keeps people from getting the care they need.
A very perceptive article, and recognising a problem that is wider and deeper than the obvious examples.
It is not just a lesson from the past, but something very much with us today.
In zoonotic disease, it is easier to blame illegal immigrants and imaginary illegal infected imported meat than to see the problem as one of perception and regulatory failure. The populist tendency is to blame someone else, preferably far away, voiceless and innocent.
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Fascinating piece. With apologies for self-reference, might you be interested in my book Cruelty? It discusses disgust and disease metaphors, especially in the context of mass atrocities. I don’t talk about HIV specifically, but the analysis strikes me as relevant to your work. Hope it helps.
Thanks, Pat. Zoonotic diseases present another interesting example of this phenomenon.
Kathleen, thanks so much for the reference to your book. I will check it out.
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Pls Sara, I am to make a speech concerning HIV/AIDS stigma and discrimination. I’ve already started writing the speech, but I need more examples of specified infected individuals that are experiencing discrimination. Ex: “Just this year, a man in Pennsylvania was denied a job as a nurse’s assistant when he revealed his HIV status to his employer”.