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Overview
Using ethnographic, media, and narrative analysis, this book explores the vernacular explanatory models used in decisions concerning contagion to better understand the real fears, risks, concerns, and doubts of the public. Kitta explores immigration and patient zero, zombies and vampires, Slender Man, HPV, and the kiss of death legend, as well as systematic racism, homophobia, and misogyny in North American culture, to examine the nature of contagion and contamination.
Conversations about health and risk cannot take place without considering positionality and intersectionality. In The Kiss of Death, Kitta isolates areas that require better communication and greater cultural sensitivity in the handling of infectious disease, public health, and other health-related disciplines and industries.
Product Details
| ISBN-13: | 9781607329275 |
|---|---|
| Publisher: | Utah State University Press |
| Publication date: | 10/15/2019 |
| Sold by: | Barnes & Noble |
| Format: | eBook |
| Pages: | 202 |
| File size: | 1 MB |
About the Author
Read an Excerpt
CHAPTER 1
Introduction
To date, the study of contagion and contamination has been the domain of health professionals, public health professionals, and epidemiologists, but there are gaps in their work. For example, while historical texts have been published on contagious disease, they do not always offer suggestions on how to address the complex issues surrounding lay perceptions of contagion and contamination. Frequently, medical articles only state that more research or education is needed. In light of this, it can be difficult to consider the cultural or social implications of not understanding contagion and contamination narratives. As anthropologist Emily Martin (1993, 67) notes, "The practices and concepts that pertain to the human body often provide singularly telling clues about the nature of power in different historical and cultural contexts."
Some studies from the humanities and social sciences exist that approach the topic of contagion and contamination from a different angle. As examples, researchers have published on thought contagion, noninfectious disease as contagious, contagion and finance, collective behavior and contagion, contagion and commerce, and sacred contagion. Concepts from other works, such as James George Frazer's notions of sympathetic and contagious magic (1935), Emily Martin's Flexible Bodies (1994), Mary Douglas's Purity and Danger (2003), Priscilla Wald's Contagious (2008), and Gillian Bennett's Bodies (2009) are utilized here, as these are the most relevant contemporary works that directly address the concepts of contagion and contamination in the United States and Canada.
Since the early 2000s, there has been a steady stream of popular culture and academic texts concerning contagion and contamination (Lavin and Russill 2010, 66). This indicates and reflects a growing concern about the topic. Priscilla Wald refers to these stories as "outbreak narratives" and states that the outbreak narrative "follows a formulaic plot that begins with the identification of an emerging infection, includes discussion of the global networks throughout which it travels, and chronicles the epidemiological work that ends with containment" (2008, 2). Wald states that these outbreak narratives have been present in journalism and popular culture since as early as the late 1980s. These outbreak narratives were coupled with public health threats such as HIV/AIDS, SARS, West Nile Virus, antibiotic-resistant bacteria, bird flu (H5N1), swine flu (H1N1), Ebola, and Middle East Respiratory Syndrome (MERS).
Many of these diseases are linked to geographical space and how it is used is a significant factor in popular culture, folklore, and epidemiological narratives. Concerns about shipping technologies, increasing international travel, overpopulation, national security, and foreigners often accompany these narratives. They share anxieties that "focus on destabilized spatial arrangements, and how this destabilization has produced more and more efficient vectors for disease" (Lavin and Russill 2010, 68).
Contagion and contamination narratives are unique in that these stories — as actual accounts, legends, rumors, epidemiological descriptions, belief statements, and other types of narrative — seem to resonate with the dominant narrative in North American culture surrounding both science and scientific metaphors. As Lavin and Russill (2010, 73) state, "The logic of contagion organizes a series of metaphors and images that our society uses to make sense of social interactions; these images animate cataclysmic end-of-days nightmares to rags-to-riches style narratives of marketing success to the pedestrian and chronic medical conditions of the overweight. What is most interesting is not that somebody sought to explain these situations as contagious diseases, but that these descriptions have proven so persuasive to large numbers of people." In this book I hope to contribute to the discussion of why these narratives speak so clearly to us.
My research draws on and is consistent with a number of studies that apply vernacular health belief research to health education and health promotion policy. My work uses as its central premise the notion that health education must be based on community understandings of risk and that such understandings require ethnographic investigation (Hufford 1982 and 1997; O'Connor 1995; Brady 2001; Goldstein 2004; Kitta 2012; J. Lee 2014). Goldstein (2004, 56) notes, "Culturally sensitive health education must adapt itself to existing beliefs, attitudes and practices within a community rather than expect that the community will change to fit the educational program." As Sobo (1995, 3) notes, research on risk perception suggests that the meanings associated with a given risk affect how individuals "personalize, internalize, and apply to themselves the information they receive about that risk." Without an understanding of how individuals perceive contagion and contamination, recommendations for how to handle contagious and contaminated situations and the legends and beliefs associated with them may be detrimental to all of those involved. At their best, they will be ineffective and, at their worst, deadly.
A folklorist like myself is uniquely positioned to understand contamination and contagion for a variety of reasons. To begin, folklorists spend a great deal of time looking at the transmission of information and the networks associated with that information. Although folklorists track information differently from, for example, epidemiologists, the process is not all that dissimilar. Folklorists often concern themselves with how narratives are transmitted, how they circulate, how people meet and know each other, and how those people interact.
Significantly, folklorists also understand the importance of narrative. As Priscilla Wald (2008) points out, the outbreak and carrier narratives are a crucial part of how we understand and process information about disease and spread. Additionally, folklorists offer an understanding of the effect tradition has on these topics. Certain diseases are traditionally more feared than others. Polio, for example, triggers more fear than chicken pox, which is seen more as a nuisance (Kitta 2012) than a serious illness. Other diseases and conditions, such as diabetes, are accepted more readily because they are normalized through the process of tradition (Bock and Horrigan 2015).
Folklorists also understand the importance of dynamism and variation to our field of study. In other fields consistency is crucial, and variants become outliers to be eliminated instead of an important part of the picture. Local variations ("oikotypes") underscore the importance of a narrative because they add to its believability and validity. If the narrative was not important, then there would be no need to make it more believable by localizing a version. Variations — especially those that do not last long — can also help scholars understand an individual's level of belief in the narrative (or at least the level of belief that they will admit to believing). Finding failed variants that were short-lived demonstrate what is not believable in a given situation.
Oikotypes, because they involve local, deeply embedded information, show that even when people are unaware of it, they are communicating something, especially by the narratives they choose to tell. While at first reading, many legends may sound implausible, they often express a more general anxiety, such as the fear of contagion or contamination. These narratives can and do affect medical decision-making and take the place of factual information (Goldstein 2004; Kitta 2012; J. Lee 2014). Even when individuals tell narratives are not believed or are treated as "just stories," they can still negatively affect decision-making processes. This, in turn, could be detrimental to the health of both individuals and communities.
Folklorists seek to understand the nature of representation and often choose to study — and sometimes speak for — those who they perceive do not have a voice. Folklore scholars have long studied issues associated with representation; they continue to be engaged in conversations about how to collaborate with their participants so as to best represent them. Representation is often missing in vernacular discussions about disease, especially in narratives about carriers, "superspreaders," and "patient zeros." These narratives can turn people into patterns and networks, and thus the humanity of the individual and their story is lost. While containing and preventing further infection is important, people should not be thought of only as viruses to be controlled. They should also be considered a participant in the process, and perhaps a part of the solution.
It is important to recognize that people need to be a part of this process and that society cannot be controlled with information alone. My past scholarship on the vaccination discourse demonstrates that even with pertinent health information, rumors and legends will persist and become a part of the medical decision-making process (Kitta 2012). However, both folklorists and health communicators have noted that recitation of facts is not the most effective way to communicate scientific information to the lay public. A greater understanding of the above-mentioned factors could lead to better communication between the lay and medical communities. Folklorists, for example, analyze how stories can be used as a way of articulating what is difficult to discuss, because it is difficult emotionally, culturally, or even because it is too abstract.
Stories are a way of processing information. They give structure and create meaning. Not only do they let people articulate beliefs that they are currently processing, but they also allow for the sharing and testing of those beliefs with others. They give the storyteller the opportunity to see how others react to that information. And yet not all beliefs that are articulated are actually believed by the person speaking about them. Some beliefs are traditional, such as telling someone that if they break a mirror they will have seven years of bad luck. The person who articulates this information may or may not believe it but will still pass on this information.
Stories can often highlight bias, and there are inherent biases in people, organizations, and disciplines. One publication that sheds light on such biases is the 2013 "CDC Health Disparities and Inequalities Report," issued by the Centers for Disease Control and Prevention. This report clearly demonstrates that people of color in the United States receive a lower quality of care than others in the same socioeconomic bracket (Centers for Disease Control and Prevention 2013). Recognizing those biases and the agendas associated with them may help medical professionals and scholars to unpack narratives associated with contagion and contamination. Understanding that there is a desire to assign blame, even in situations where blame is not helpful, may help scholars to identify situations where this occurs and attempt to eliminate the associated stigma.
Additionally, it is important to stress that I am neither anti-establishment nor anti-medicine. I do not see official medical establishments or practices as presenting ideas that are in stark contrast to those I present here. Instead, my methods can commingle with established practices: each can reinforce the Other, offer opportunity for discourse, and be mutually beneficial. It has been my experience that people enter the field of medicine because they want to help people. Unfortunately, the structural bias within the system does not always allow for individuals therein to make changes, in part because the system does not teach them how to deal with some of the issues raised by this (and other) work. Those within the system, no matter how much they wish to help or how they feel about bias, also benefit from structural biases in other ways, including the power and privilege associated with the medical establishment. Research in areas like folklore, medical humanities, anthropology, narrative medicine, sociology (and others, all of which have their own sets of biases, issues, and privileges) seeks to offer more information and counterbalance these systems of power. Thus, it is folklorists' deepest hope that those in the medical establishment read our work, reflect, and engage with us to make our ideas more practical and useful for those working within institutionalized medicine.
Reciprocally, other disciplines have much to offer folkloristics, and folklorists have worked with scholars from a multitude of other disciplines. In particular, narrative medicine, public health, medical humanities, sociology, and other disciplines are often quoted throughout this book. Concepts such as pandemic, epidemic determinant, health outcome, intervention, prevention, and population health are used throughout this text and are all derived from my research and readings in public health. My approach to the materials, while folkloric in its fundamental nature, is also strongly influenced by narrative medicine. Narrative medicine, with its focus on voice and representation, demand for deep readings of text, nonneutral language, and "nondualistic effort to appreciate the spatial nature of a body, both within its individual biological frame and within its social and political and professional frame" (Charon 2017, 191), is a natural fit with both this research and folklore studies at large.
Additionally, I understand that the primary aim of those dealing with disease is the eradication of that disease, and I am in no way trying to hinder their efforts or undermine the importance of what they do. Ebola and HPV, two of the diseases that I discuss in this work, are devastating (albeit in different ways), and the primary focus as regards those diseases should remain on prevention and elimination. From 2014-2016 there were there were over 28,000 suspected cases of Ebola in West Africa that resulted in 11,320 deaths (Centers for Disease Control and Prevention 2016). The statistics for HPV are also staggering, and while fewer people die of the disease, it is so virulent that almost every person gets the virus at some point in life (Centers for Disease Control and Prevention 2017).
While disease eradication is vital to a healthy planet, I do not think that introducing cultural sensitivity into the equation presents a distracting contrast. When done well, exercising cultural awareness increases uptake of a treatment. It is far easier for the smaller group of medical practitioners to change their tactics than ask those at risk, especially those who are already suffering and stigmatized, to make significant changes to their way of life. Major organizations, such as the aforementioned Centers for Disease Control and Prevention (CDC), have created official statements and publications that directly address stigma as it relates to Ebola (Centers for Disease Control and Prevention 2015d, 2015e). In so doing, the CDC is clearly striving to be culturally aware and is encouraging those involved to work to fight stigma.
Why Do Understanding Contagion and Contamination Matter?
It is crucial to understand the concepts of contagion and contamination for a variety of reasons. Firstly, these concepts demonstrate the common concerns of the lay public and reflect sources of apprehension within the culture. Specific themes seem to recur in contagion and contamination literature, such as immigration; racial and class conflicts; "slut shaming" and misogyny; homophobia; the struggle between authoritative and vernacular knowledge and belief; and victimization caused by the abuse of authority. These matters go beyond contagion and speak to other medical circumstances as well as social conditions. A knowledge and understanding of these broader social trends inform potential concerns and help to focus on the larger fears, as opposed to specific incidents.
Secondly, the aforementioned contagion and contamination themes recur consistently over time and across space, typically when a new virus emerges or a health concern comes to light. If medical professionals want to educate and inform the public about particular diseases, they must be aware of the themes that occur at the onset of a disease or the introduction of a vaccine. Understanding these subjects may also help identify which rumors and legends are likely to occur and provide the public with health information in a timely manner. History has shown us that some of these legends are true and, if taken seriously, may lead to the discovery of safety issues for a variety of conditions. Even when these narratives are questionable, they still give insight into lay understandings of health and wellness, including perceived risk and risk behaviors.
The presence of contagion narratives gives the lay public a forum to discuss their concerns, dispute them, and subsequently deny or accept them. When the perceived threat is based on a misunderstanding of science or medicine, professionals from academic and medical communities have the opportunity to discuss their knowledge with the public. In these situations experts can clearly communicate with the public, trusting that they will make an informed decision for themselves. However, denying or dismissing information instead of working with the public to understand is one way experts can lose their authoritative voice within the community. This issue has become increasingly complex over time due to the amount of information available to the public, what information is not readily available to the public (for example, information that is behind paywalls), and the promotion of politically charged information that focuses on the maintenance of a specific set of beliefs instead of on the presentation of a balanced viewpoint.
(Continues…)
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