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Naming diseases, between science and contemporary imaginaries

When a new pathology is identified, giving it a name is necessary to be able to describe, research and treat it. But it is far from simple. Many conditions bear the name of the person who discovered them. But if the eponym has been, for a long time, a way to assert scientific authority, nowadays it does not transmit relevant information concerning the disease it indicates and often loses meaning when it crosses linguistic and cultural boundaries.

The alternatives to the use of the eponym are no less critical. The identification of HIV, for example, has problematized the overlap between disease and certain groups of people. Originally, HIV / AIDS was called the “four H disease”, as it was believed to only affect Haitians, homosexuals, heroin users, and haemophiliacs, while part of the press referred to it as GRID (Gay-Related Immune Deficiency) [1].

Another strategy was giving pathologies the name of the place considered to be of “origin”, and even this choice poses many problems. It is the case of Ebola [2]. The disease appeared for the first time in the village of Yambuku (today’s Democratic Republic of Congo), but giving it the name of the place would have entailed a substantial risk of stigmatization – as had already happened with the virus Lassa, identified for the first time in the homonymous city, in Nigeria. It was therefore proposed to give the disease the name of a river. Excluding the Congo River, already “taken” by a virus causing haemorrhagic fever, Ebola was chosen, so entering the list of waterways that “gave” their name to a virus, such as Machupo (associated with the so-called fever) Bolivian hemorrhagic) and the Ross River (associated with epidemic polyarthritis).

Beyond the stigmatizing effect, calling viruses or pathologies with place names brings us back to a process well known to researchers on Western scientific discourse, namely the construction of “tropicality” [3]: a concept that denoted not only cultural and political, but also environmental and climatic difference, and that went to feed that process of creation of alterity that has been for a long time – and it is still, although the voices that try to deconstruct it – characteristic of the relationship that the West has entertained with the rest of the world. Epidemics such as Ebola and cholera, but also HIV, recall specific areas of the world outside the West: this plays a greater force in our imagination than thinking about the condition of economic impoverishment, and social and environmental devastation – or, as the physician and anthropologist Paul Farmer sharply called it, of “structural violence” [4] – in which these epidemics have more chances to expand.

In 2015, the World Health Organization (WHO) provided guidelines on how to give socially acceptable names to diseases. However, these cannot be separated from the complex social meanings and from the moral universes through which we read the social and bodily reality that surrounds us, and that influence not only the treatment of the disease but even the experience we have of it.

In an article in The Lancet [5], the anthropologist Katrina Karkazis emphasizes how looking at sickness also means looking at the way people, their relational networks, and society perceive and respond to medical conditions. If the meaning of a disease derives from what is considered its main characteristics (symptoms, mode of transmission, vulnerability of specific groups, and so on), this understanding is indissolubly linked to the name: and often it is precisely the name to convey an idea, subtle or not, with respect to what belongs to the “norm” and what exceeds it [6]. The ways in which we identify medical conditions are charged with a meaning also linked to identity; in particular, when a diagnosis denotes “types” of people, the name we give to a disease can have substantial consequences on the lives of those who are “labelled”, and who must live intimately with its meaning. Karzakis indicates intersexuality [7] as one of the areas in which the connection between the denomination of medical conditions and its social implications is particularly evident. While some consider the term “intersex” as an overcoming of the most stigmatizing “hermaphrodite”, many of the people in this condition read it as a further pathologization of their bodies: as an activist told Karzakis, in this way they end up being considered “disorders” and not people. Instead of demystifying the medical conditions associated with atypical sexual anatomy, medical terminology has reinforced the idea that intersex is something to be ashamed.

Intersexuality is not the only condition whose name conveys a social meaning. We have already mentioned the case of HIV / AIDS. Perhaps the most famous example in literature is that of consumption, later renamed tuberculosis [8]: the discovery that the disease was transmitted by microbes changed, but did not immediately replace, the previous belief that consumption was a “moral failure”. In the modern imagination, tuberculosis remains associated with a disease of specific categories of people, mainly poor and immigrants – as confirmed by a specific political communication.

What these examples suggest is that the names and concepts of medicine migrate from scientific language to the common one [9], investing imaginaries, moral universes, and even identity practices. The same genetics, while dealing with elements invisible to the naked eye, indicates needs and calculates risks, defining new subjectivities and new forms of sociality, discussed by several contemporary authors [10], and problematizing the categories of normal and pathological again. In this context, the Humanities for Health, as well as Anthropology and the Philosophy of Science, are essential to understand not only the historical and contemporary practices of naming medical conditions, but also the moral worlds behind them, and which indicate how we define otherness and even ourselves.

[1] cfr Lizzie Crouch, The twist and turns of naming diseases, BBC News

[2] cfr Bahar Gholipour, How Ebola got its name, Live Science

[3] Gregory Bankoff, 2001. Rendering the World Unsafe: “Vulnerability” as Western Discours, Disaster 25(1):19-35

[4] Paul Farmer, 2004. An Anthropology of Structural Violence, Current Anthropology 45(3):305-325

[5] Karkazis Katrina, 2008. Naming the problem: disorders and their meanings, The Lancet 372:2016-2017.

[6] Robert Aronowitz, 1998. Making sense of illness: science, society, and disease. Cambridge: University Press.

[7] Karkazis Katrina, 2008. Fixing sex: intersex, medical authority, and lived experience. Durham: Duke University Press.

[8] Charles E. Rosenberg, Janet Lynne Golden, 1992. Framing disease: studies in cultural history. New Brunswick: Rutgers University Press.

[9] Barbara Duden, The euro and the gene – perceived by a historian of the unborn, The Ursula Hirschman Annual Lecture on Gender and Europe, 7 May 2002

[10] cfr works Paul Rabinow and Ian Hacking on biosociality.

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