@prefix vivo: . @prefix edm: . @prefix ns0: . @prefix dcterms: . @prefix skos: . vivo:departmentOrSchool "Arts, Faculty of"@en, "English, Department of"@en ; edm:dataProvider "DSpace"@en ; ns0:degreeCampus "UBCV"@en ; dcterms:creator "Gaudet, Loren"@en ; dcterms:issued "2020-03-23T17:50:14Z"@en, "2020"@en ; vivo:relatedDegree "Doctor of Philosophy - PhD"@en ; ns0:degreeGrantor "University of British Columbia"@en ; dcterms:description """This dissertation uses the tools of rhetorical study to investigate how health awareness, as both a concept and a set of beliefs that reinforce ideals of health, permeates everyday life and affects ways of being. I draw on Kenneth Burke’s concepts of “orientation,” “altar,” and “piety” to offer a more nuanced description of health awareness. Orientations of health awareness name both altars and pieties. Altars are the iterations of health that should be worshipped, and the pieties provide the appropriate ways to worship at each altar. Health awareness (as in health-awareness campaigns, for example) promotes both altars of health and their corresponding pieties. Using this Burkean theoretical framework, I argue for a reconceptualization of health awareness as a series of temporal and epistemic orientations that are increasingly mediated through technology, are affectively charged, and are extensively commodified. In each of my chapters, I identify a different heath awareness orientation, the specific pieties that correspond to each orientation, and the iteration of health that each orientation maintains. The three health awareness orientations I identify are Optimization, Preparedness, and Revelation. I approach each orientation to health awareness with exemplars in pairs, because their juxtaposition illuminates what happens, rhetorically, when people are urged to be pious: for Optimization, I examine a health and fitness campaign alongside wearable technology marketing; for Preparedness, cancer awareness campaigns alongside critical-injury insurance marketing; and for Revelation, a Lyme disease campaign alongside direct-to-consumer genetic-test marketing. Approaching health awareness through the Burkean concept of orientation highlights some of the ways that health awareness, in its various iterations, carries with it a sense of what behaviors are appropriate (and inappropriate) and shapes understandings of selves and others. This dissertation contributes to Rhetoric of Health of Medicine, Science and Technology Studies, and Critical Health Studies by illustrating how rhetorical strategies work to shape our sense of what health is and what it means to be healthy. This dissertation is also aimed at readers in public health, insofar as it adds greater nuance to our understanding of health awareness practices."""@en ; edm:aggregatedCHO "https://circle.library.ubc.ca/rest/handle/2429/73785?expand=metadata"@en ; skos:note " THE RHETORIC OF HEALTH AWARENESS by Loren Gaudet B.A. (Hons.), University of Victoria, 2011 M.A., York University, 2013 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIRMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY in THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES (English) THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) March 2020 Ó Loren Gaudet, 2020 ii The following individuals certify that they have read, and recommend to the Faculty of Graduate and Postdoctoral Studies for acceptance, the dissertation entitled: The Rhetoric of Health Awareness submitted by Loren Gaudet in partial fulfillment of the requirements for the degree of Doctor of Philosophy in English Language and Literatures Examining Committee: Judy Segal, Professor, English, UBC Supervisor Ian Hill, Associate Professor, English, UBC Supervisory Committee Member Jeffrey Severs, Associate Professor, English, UBC Supervisory Committee Member Margery Fee, Professor, English, UBC University Examiner Thomas M Kemple, Professor, Sociology, UBC University Examiner Additional Supervisory Committee Members: Amy Koerber, Professor, Communication Studies, Texas Tech University Supervisory Committee Member Supervisory Committee Member iii ABSTRACT This dissertation uses the tools of rhetorical study to investigate how health awareness, as both a concept and a set of beliefs that reinforce ideals of health, permeates everyday life and affects ways of being. I draw on Kenneth Burke’s concepts of “orientation,” “altar,” and “piety” to offer a more nuanced description of health awareness. Orientations of health awareness name both altars and pieties. Altars are the iterations of health that should be worshipped, and the pieties provide the appropriate ways to worship at each altar. Health awareness (as in health-awareness campaigns, for example) promotes both altars of health and their corresponding pieties. Using this Burkean theoretical framework, I argue for a reconceptualization of health awareness as a series of temporal and epistemic orientations that are increasingly mediated through technology, are affectively charged, and are extensively commodified. In each of my chapters, I identify a different heath awareness orientation, the specific pieties that correspond to each orientation, and the iteration of health that each orientation maintains. The three health awareness orientations I identify are Optimization, Preparedness, and Revelation. I approach each orientation to health awareness with exemplars in pairs, because their juxtaposition illuminates what happens, rhetorically, when people are urged to be pious: for Optimization, I examine a health and fitness campaign alongside wearable technology marketing; for Preparedness, cancer awareness campaigns alongside critical-injury insurance marketing; and for Revelation, a Lyme disease campaign alongside direct-to-consumer genetic-test marketing. Approaching health awareness through the Burkean concept of orientation highlights some of the ways that health awareness, in its various iterations, carries with it a sense of what behaviors are appropriate (and inappropriate) and shapes understandings of selves and others. iv This dissertation contributes to Rhetoric of Health of Medicine, Science and Technology Studies, and Critical Health Studies by illustrating how rhetorical strategies work to shape our sense of what health is and what it means to be healthy. This dissertation is also aimed at readers in public health, insofar as it adds greater nuance to our understanding of health awareness practices. v LAY SUMMARY This dissertation uses the tools of rhetorical study to investigate how health awareness permeates everyday life and affects ways of being. Crucial to my argument is the point that when we talk about health awareness, we are not always talking about the same thing. Through three different paired examples, I explore how health awareness is communicated through both public health and commercial marketing campaigns, and argue that as the sources of information change, so too do the ideas of health that we are asked to be aware of. This dissertation contributes to current scholarship of health awareness by illustrating how persuasion works to shape our sense what health is and what it means to be healthy. This dissertation is also aimed at readers in public health, insofar as it adds greater nuance to our understanding of health awareness practices. vi PREFACE This dissertation is original, independent work by the author, Loren Gaudet. vii TABLE OF CONTENTS ABSTRACT ………………………………………………………………..…………….…….. iii LAY SUMMARY ………………………………………………………..………..…………….. v PREFACE ……………………………………………………..…………………..………….… vi TABLE OF CONTENTS ………………………………………………….……..………….… vii LIST OF FIGURES ……………………………………………………………..….………….. vii LIST OF ACRONYMS ……….……………………………….…………….……..…………... ix ACKNOWLEDGEMENTS ………………………………………..……………………..…….. x INTRODUCTION ……………………………………………………..……………..…………. 1 Cracking Open Health Awareness ……………………………………...………..……….. 3 Theoretical Framework …………………………………………..…………..………….. 10 Methodology …………………………………………………..……………..………….. 18 Chapter Outline ……………………………………………..………………..………….. 23 CHAPTER 1: OPTIMIZATION ……………………………………………………...……….. 26 ParticipACTION and Fitbit …………………………….………………….……………... 29 Beyond Neoliberalization …………………………………………..……….…...……….. 32 Pieties of Optimization …………………………………………..……….……...……….. 37 More Movement is Always Better …………………………………………...……….. 38 Time is a Resource to Be Managed ……………………………………………..…… 44 Conclusion ………………………………………..…………………………………….... 56 CHAPTER 2: PREPAREDNESS ………………………………………..….……………..…… 59 “Reduce Your Risk!” ………………………………………...…………….…..…………. 65 “Endangered Butts” ………………………………………...……………...……………... 70 Critical-Illness Insurance Marketing ………………………………………..……………. 77 CHAPTER 3: REVELATION ………………………………………..………………………… 88 Para-Human Actors ………………………………………...……………………..……… 97 Certification ………………………………………..…………………………..……….. 105 Persuasion ………………………………………...………………………….…….…… 113 CONCLUSION …………………………………………………………………………...…... 124 WORKS CITED ……………………………………..………………………………..………. 134 viii LIST OF FIGURES Figure 1: Image of a child’s face with two ticks ……………………………………………… 100 ix LIST OF ACRONYMSADHD Attention Deficit Hyperactivity Disorder ANT Actor Network Theory BBC British Broadcasting Corporation BCA Breast Cancer Action BCF Breast Cancer Fund BMO Bank of Montreal DSM 4 Diagnostic and Statistical Manual of Mental Disorder, 4th Edition DSM 5 Diagnostic and Statistical Manual of Mental Disorder, 5th Edition DTC Direct-to-Consumer DTCA Direct-to-Consumer Advertising FDA Food and Drug Administration PSA Public Service Announcement RBC Royal Bank of Canada RHM Rhetoric of Health and Medicine RSQ Rhetoric Society Quarterly STS Science and Technology Studies TLC Toxic Links Coalition x ACKNOWLEDGEMENTS This dissertation was completed with financial support from the Social Sciences and Humanities Research Council of Canada and from the University of British Columbia. I am very thankful for this funding. I am deeply grateful to my supervisor Judy Segal for her unwavering support throughout my program of study. I have benefitted enormously from her intellect, commitment, and patience. Thank you for being in my corner. Special thanks to my committee members Jeffery Severs and Ian Hill for their careful reading and thoughtful comments on my work, and to Carla Nappi and Adam Frank, for their guidance through the qualifying process. I also wish to thank Tiffany Potter and Laurie McNeill for their continued support over the years and for helping me become a better teacher. I have also been lucky to draw on the collective brilliance of my many teachers and colleagues (more, I’m happy to write, than I can name here) at the University of Victoria, York University, and the University of British Columbia. My community of friends and my family have sustained me throughout this process. Special thanks to my mom, who has supported me all along. Lastly, I thank my son, August Gaudet, for helping me to keep things in perspective, and my partner, Chris Gaudet, without whom none of this would be possible. 1 INTRODUCTION This dissertation uses the tools of rhetorical study to investigate how health awareness, as both a concept and a set of beliefs that reinforce ideals of health, permeates everyday life and affects ways of being. Whereas current literature, such as Jonathan Purtle and Leah Roman’s analysis of health awareness days, or Larry Purnell’s argument for the importance of “Movember,” often describes health awareness as the (uncomplicatedly good) provision of health, I draw on Kenneth Burke’s concepts of “orientation,” “altar,” and “piety” to offer a more nuanced description of health awareness. Orientation describes a bundle of judgments that comprise a way of perceiving the world; an altar refers to a site of worship that requires a certain set of beliefs; and piety, or pieties, names the beliefs appropriate for worship at said altar. Orientations of health awareness name both altars and pieties. Altars are the kinds of health that should be worshipped, and pieties inform a sense of how to worship at each altar. Health awareness (as in health awareness campaigns, for example) promotes both altars of health and their corresponding pieties. The orientations of health are versions of health itself—the “ultimate term” in a Burkean lexicon (Rhetoric 710-711)—or what Richard Weaver calls a “god term” (212). When I describe an altar of health, I extend the metaphor of place of worship to a specific ideal of health. In the following chapters, I identify three health awareness orientations: Optimization, Preparedness, and Revelation. I approach each health awareness orientation with exemplars in pairs, because their juxtaposition illuminates what happens, rhetorically, when people are urged to be pious: for Optimization, I examine ParticipACTION, a Canadian health and fitness campaign, alongside Fitbit marketing; for Preparedness, two awareness campaigns for colorectal cancer alongside Canadian critical-injury insurance marketing; and for Revelation, an awareness campaign for Lyme disease alongside direct-to-consumer (DTC) genetic-test marketing. 2 My project is motivated in part by the understanding that, as Judy Segal writes, “obvious examples of a rhetorical medicine can be displayed, but others, less obvious, need to be teased out” (Segal Health 3). Health awareness is often communicated through obvious sources, such as non-profit or government agencies, and obvious forms, such as health awareness days or public health campaigns. A Burkean theoretical framework helps tease out less obvious iterations of health awareness in terms of beliefs and ideals. By focusing on orientation and pieties in paired examples, I show that health awareness appears in more places than only public health campaigns. This dissertation contributes to Rhetoric of Health of Medicine (RHM), Science and Technology Studies (STS), and Critical Health Studies by illustrating how rhetorical strategies work to shape our sense of what health is and what it means to be healthy. This dissertation is also aimed at readers in Public Health, insofar as it adds greater nuance to our understanding of health awareness practices. The present chapter introduces the context for the project, articulates the theoretical framework and the methodology, and outlines the chapters to follow. Cracking Open Health Awareness In 2015, the American Journal of Public Health published a commentary, “Health Awareness Days: Sufficient Evidence to Support the Craze?” in which public health scholars Jonathan Purtle and Leah Roman argue that health awareness days are not held to sufficient scrutiny considering the extent to which they have been embraced by the public. They explain that health awareness days have proliferated over the past four decades, with 202 bills introduced into US Congress with “awareness day” in the title since 1973, and 71% of these since 2005 (1061). Purtle and Roman review the scholarly literature about health awareness days, categorizing three kinds of articles: editorials and commentaries that promote various health awareness days; articles that present data about awareness days (for example, data about participants in awareness-day events) without any evaluation; and articles that assess the efficacy 3 of such days (1061-62). According to Purtle and Roman, none of these articles defines the concept of health awareness (1062). Moreover, Purtle and Roman write, “Given the ubiquity of health awareness days and the ambiguity of their messages, it is possible that they bombard the public with information to the point where individuals conflate being knowledgeable about a health issue with taking action to address it” (1064). Purtle and Roman’s article illuminates some of the difficulties shared by scholars thinking and writing about health awareness. Even as they engage critically with the ambiguity of the concept of health awareness, they reinforce assumptions about what health awareness is and what it does. Health awareness practices, for Purtle and Roman, do not extend beyond health awareness days. This understanding does not account for the other ways that health awareness, in its ubiquity and ambiguity, circulates. Purtle and Roman also make assumptions about what health awareness does. In the conclusion of the article, they call for public health professionals to ensure that health awareness days communicate the importance of social responsibility. They write, “Otherwise, health awareness days might do little more than reinforce ideologies of individuals’ responsibility and the false notion that adverse health outcomes are simply the product of misinformed behaviors” (1065). Here, Purtle and Roman suggest that health awareness plays a role in the responsibilization of individuals for their health states and participates in shaping good health as primarily the outcome of informed behaviours. Although they do not use the term, Purtle and Roman gesture toward the conclusion that health awareness plays a role in the neoliberalization of health,1 and with it, the responsibilization of individuals for their health states. 1 It is well-established that neoliberalism, defined in part by an increase in the centrality of the market, a decrease in government intervention, and an emphasis on consumer choice, impacts our relationships to health. “The neoliberalization of health,” refers to the increasing privatization, commodification, and individualization of health under neoliberalism (see Alan Petersen and Deborah Lupton). 4 I begin with Purtle and Roman’s article because it provides some context for the purpose of my project. Their article makes two notable moves: defining health awareness as comprising, essentially, awareness days, weeks, and months; and concluding that health awareness problematically suggests that individuals are solely responsible for their own health. The first move obscures the ways the rhetoric of health awareness appears and circulates in arenas beyond the realm of public health campaigns. The second move is characteristic of much critical health scholarship: many critical analyses end up at the conclusion that targeted health messaging contributes to the neoliberalization of health, and go no further. This dissertation, then, has three purposes. The first is to offer a description of health awareness that accounts for the ubiquity and ambiguity of the concept. I reconceptualize health awareness as a series of temporal and epistemic orientations that are mediated through technology, are affectively charged, and are extensively commodified. Each of my chapters not only nuances “health awareness” by exploring how particular orientations foster particular ideals of health, but also explores the roles that temporality, episteme, technology, affect, and commodification play in shaping approaches to altars of health. The second purpose of this dissertation is to illustrate the ways that health awareness discourse circulates beyond particular public health campaigns. Each chapter pairs online materials of a health awareness organization with online materials of a commercial product (or set of products) and describes how the appeals reinforce each other. The third purpose is to disrupt the common conclusion that health awareness participates in the neoliberalization of health. Health awareness certainly is involved in the neoliberalization of health. However, rather than positing this as a conclusion, I view a neoliberal model of health as already in place, and, therefore, a starting point for analysis. In doing so, I pursue additional lines of inquiry such as what, in addition to personal responsibility, health awareness orientations require in terms of understandings of life, death, futures, and pasts. 5 One of the confounding things about awareness2 itself as a goal of health-information campaigns is that awareness may well not be enough to move people to the action or behaviour the campaign is promoting. There is, in rhetorical theory, a distinction between conviction, a belief in something, and persuasion, a movement to action based on that belief. Health-information campaigns may convince and not persuade. Ann Christiano and Annie Neimand write, for example: If the goal is solely to increase knowledge of an issue, then an awareness campaign can work just fine. But is it ever enough for people to simply know more about something? If, for example, the goal were to raise awareness among new parents of the importance of immunizing their children, you wouldn’t be satisfied if parents were simply aware. You’d want to be sure that they were also having their children immunized for the right diseases at the right age. (Christiano and Neimand 2) Christiano and Neimand provide an apt example of immunization awareness: such a campaign is not merely intended to inform or educate, but rather, to incite action—and it may not succeed at the latter, especially. Still, many public health campaigns presume that knowledge leads to ameliorative action. J. Blake Scott explores this and other assumptions, such as more knowledge is always better, in what he calls “the knowledge enthymeme” (“The Public” 58). The enthymeme is a rhetorical device in which a major or minor premise is omitted in a syllogistic argument. This move requires the audience to supply the missing premise, and so, the audience is recruited in the making of the argument. In his example of an HIV-testing program for newborns, Scott identifies 2 We know that many organizations endeavor to raise public awareness of something, but meanings of awareness, and the desired results in its name, remain underspecified. Popular definitions posit “awareness” as synonymous with perception, knowledge, and information—and its meaning changes from one context to another: environmental awareness is different from mental health awareness, for example. That is, “awareness” itself is an ambiguous term, and when paired with “health,” “awareness” does not become any clearer. 6 the unstated premise that testing itself has value since it produces knowledge. But knowledge (such as a positive HIV test) does not necessarily lead to ameliorative action. When Christiano and Neimand describe an immunization awareness campaign, they demonstrate the knowledge enthymeme at work. The assumption driving the campaign is that knowledge about vaccines will result in action and beneficial outcomes. In other words, the term “awareness” invokes the knowledge enthymeme by relying on assumptions that information leads to knowledge, which leads to actions, which leads to beneficial outcomes. But as Scott and Christiano and Neimand show, these assumptions are sometimes erroneous. Research on health awareness often assesses the effectiveness of a health awareness campaign in linking information, knowledge, and actions without necessarily questioning what it means to increase awareness in the first place. For example, although Christiano and Neimand problematize the meaning of “awareness” in the context of awareness campaigns, they make this move to provide social-change activists with more effective communication strategies. Like much other scholarship addressing the effectiveness of health awareness campaigns,3 Christiano and Neimand’s work aims to improve health communication itself. Here, “awareness” refers to a kind of knowledge-deliverable that aligns with Purtle and Roman’s working definition of health awareness as “the provision of health information” (1064). This dissertation critically questions the persuasive strategies of health awareness to uncover unarticulated goals and considers what health awareness means and what it does. I align myself with authors who have critically examined how specific health awareness campaigns do more than just raise awareness. For example, Barbara Ehrenreich, Christopher Duerringer, and Phaedra Pezzullo, criticize breast cancer campaigns like Susan G. Komen for the Cure for their 3 Literature assessing the effectiveness health awareness includes campaigns on epilepsy (Price et al.), HPV vaccines (Blasi et al.), breast cancer (Jacobsen et al.), and stroke (Payne et al.). This literature does not pay sufficient attention to what actions awareness actually accomplishes, nor does it examine the embedded values in health awareness campaigns. 7 commodification of breast cancer awareness. Ehrenreich laments the conflation of breast cancer awareness with shopping (45-46), while Duerringer, building on Ehrenreich, notes that it is not always clear how, or if, shopping for the cure results in funding for breast cancer research. Some corporations sell products by advertising that a portion of proceeds go to organizations such as Komen,4 but “[s]till more corporations pay a flat fee to Komen in exchange for use of the organization’s icons, leading consumers to incorrectly presume that each purchase leads directly to a contribution” (Duerringer 352). These practices exemplify what Pezzullo calls “pinkwashing,” or “talk about women that does not necessarily empower women” (346).5 While Ehrenreich and Duerringer’s work critiques the commodification of breast cancer awareness, Pezzullo describes the work of the Toxic Links Coalition (TLC), which, in an attempt to counter the pinkwashing of breast cancer awareness, has renamed National Breast Cancer Awareness Month as Cancer Industry Awareness Month (354). Pezzullo writes, “Prior to my exposure to TLC’s campaign, I did not question National Breast Cancer Awareness Month, and I suspect that I am not alone. TLC’s cultural performances prompt those exposed to consider more carefully the causes of breast cancer and to ask what else a month dedicated to fighting breast cancer could become” (Pezzullo 361). These critiques of the rhetoric of breast cancer awareness campaigns uncover some of their unarticulated goals (or, at least, their effects). Scholars have also explored campaigns about, among others, sexual health (Jensen; Gardner Making), depression (Dumit Drugs; Emmons; Thornton; Gaudet), Alzheimer’s disease (Elliott), and ADHD (Conrad). Some of these studies draw attention to the way campaigns cultivate and reinforce gendered subjectivities (Emmons; Gaudet; Jensen) and racist stereotypes (Thornton), while others highlight the role of campaigns 4 As an example, Fox Home Entertainment donated only 50 cents from every $14.99 DVD purchase to Komen (Duerringer 352). 5 In a footnote, Pezzullo explains she had not seen the term “pinkwashing” before and presents it as her own. However, as she notes, many feminists have criticized corporate appropriations of feminist symbols (362). 8 in the marketing of disorders and the drugs used to treat them (Elliott; Dumit; Conrad). Although these studies cover many different illnesses, they are similar insofar as they draw attention to the role that campaigns play in widespread understandings of health and illness. While these scholars focus on specific health awareness campaigns, the following chapters “crack open”6 the concept of health awareness itself. In order to crack open something as vague and prevalent as health awareness to see how it functions in the neoliberal, capitalist, twenty-first century, North American context, I model my work after Vincanne Adams et al.’s on the concept of anticipation as they provide strategies for unpacking concepts that have become “defining qualities of our current moment” (Adams et al. 247). In their provocative and influential work, Adams et al. put a name to a largely unacknowledged affective, temporal regime. By theorizing “anticipation,” they make visible how this concept works to shape understandings of, and engagements with, local and global systems of capital, health, and knowledge production. To explain their concept of anticipation, Adams et al. lay out what they call “dimensions of anticipation” (254): injunction, a moral imperative to act; abduction, how to anticipate something; optimization, securing the best possible future for oneself, one’s family, and one’s health; preparedness, preparing for events in the present that may or may not come to pass; and possibility, considering possible futures to avoid being caught unprepared. For Adams et. al, anticipation is an affective state, characterized by hope, anxiety, and yearning. As a “regime of being in time” (247), anticipation describes a constant forward-looking and telescoping the present into the future. Like anticipation, health awareness also shapes our current way of being in the world. Health awareness can function is as an ideology. While no single understanding of ideology has 6 I borrow the term “crack open” from Michelle Murphy’s Sick Building Syndrome. In the introduction to this text, Murphy writes, “Each chapter cracks open the practices through which a discipline or epistemological tradition connected buildings and bodies” (16). This concept of “cracking open” has connotations of opening the black box or interrogating the inner workings of something previously closed. 9 universal assent, Terry Eagleton suggests that “ideological” refers to ideas that conceal, naturalize, or otherwise legitimize forms of power (7) and provide a set of discursive strategies for legitimating dominant power (8). In Eagleton’s words, ideologies “project what are in fact partisan, controversial, historically specific values as true of all times and all places, and so as natural, inevitable, and unchangeable” (9). It has been well established by scholars working across critical health disciplines that health itself is an ideology. “Health” is not a neutral term, nor an unproblematically positive one, but can imply morality (Metzl and Kirkland), responsibility (Petersen and Lupton), and governmentality (Rose). For example, in the introduction to Against Health, Jonathan Metzl defends the position articulated in the book’s title by drawing attention to the ways that the term “health,” with its connotations of personal and public good, also conceals values and judgments. He writes: Health is a desired state, but it is also a prescribed state and an ideological position. We realize this dichotomy every time we see someone smoking a cigarette and reflexively say, “smoking is bad for your health,” when what we really mean is, “you are a bad person because you smoke.” Or when we encounter someone whose body size we deem excessive and reflexively say, “obesity is bad for your health,” when what we mean is not that this person might have some medical problem, but that they are lazy and of weak will. … Or even when we see a woman bottle-feeding an infant and reflexively say, “breastfeeding is better for that child’s health,” when what we mean is that the woman must be a bad parent. In these and other instances, appealing to health allows for a set of moral assumptions that are allowed to fly stealthily under the radar. (Metzl 3) Health is ideological, and the ways we are informed to be aware of our health are also ideological. 10 Health awareness is accompanied by the often-unproblematized assumption that health awareness itself is a public and a personal good. As one article from a personal health website, Healthline, explains, health awareness events “create a ripple effect of positivity and empowerment for not only those living with health conditions, but their loved ones, too” (Aiglon). One of the consequences of the unproblematized assumption that health awareness means empowerment is that health awareness is often used by corporations to create profit. A huge amount of health awareness material is that produced by pharmaceutical companies in the name of public education and empowerment (see Calfee). As Carl Elliott explains, pharmaceutical corporations often use health awareness public service announcements (PSAs) to advertise a condition, and in turn, its treatment (97). Because PSAs are widely perceived as a non-commercial public good, they are broadcast for free (Elliott 97). I show that health awareness is more than the provision of health information, and more than an assumed public good. Not only is it used to sell products, but health awareness also inform us about the types of beliefs that are appropriate to hold about health, the kinds of health that are worthy of pursuit, and the ways we should be relating to our futures and pasts. Theoretical Framework To understand how health awareness persuades us to think and act in particular ways, I adopt a rhetorical perspective. As rhetorical critic Kelly Happe states, “A rhetorical perspective attends not only to shared beliefs across multiple discourses but also the inner workings of the texts that form them” (15). By adopting this perspective, I place my work within the growing interdisciplinary field of Rhetoric of Health and Medicine (RHM). As Segal observes, work categorized as RHM is not always written by rhetorical critics, but rather is often written by anthropologists, psychologists, philosophers, historians, and cultural critics (“Rhetoric” 312). Jessica Eberhard notes that “studies in medical rhetoric” are indebted to many other fields, 11 including cultural studies, women’s studies, philosophy, and anthropology (2). In Methodologies for the Rhetoric of Health and Medicine, J. Blake Scott and Lisa Melonçon write, “[W]e avoid the argument that rhetoricians of health and medicine necessarily use what has been traditionally identified as ‘rhetorical theory”’ (7). In their Introduction to the recently-launched journal, Rhetoric of Health and Medicine, of which they are co-editors, Scott and Melonçon laud what they call the “expansiveness” (iii) of RHM, especially as it appears in the journal. The scholarship published in the journal has been “wide-ranging in its topics and their stakeholders, theoretical frameworks and methodologies, combination of audiences, and forms,” and their authors are from across the disciplines (Scott and Melonçon iii). This spectrum of topics, articles, and contributors, they write, “shows the mutually reinforcing power of imagination and alignment in shaping the field's still-emergent identity and in creating a dwelling place for a diverse set of rhetorically minded folks” (Scott and Melonçon iii). In other words, RHM is characterized by the kinds of questions its scholars ask and methodologies they mobilize. Borrowing from Scott and Melonçon, Derkatch and Segal, and Segal, I understand RHM as scholarship characterized by three key qualities: it focuses on the persuasive elements of health and medical discourse (Scott and Melonçon; Derkatch and Segal; Segal Health); it asks “prior questions” (Segal “Rhetoric” 288); and it is methodologically mutable (Segal Health; Scott and Melonçon 5). First, Segal has established persuasion as a central element to medical discourse. She writes: Patients may have to persuade physicians that they are ill and in need of care; physicians seek to persuade patients to adhere to courses of treatment; experts persuade the public to count some states and behaviours as pathological and others not; pharmaceutical companies persuade consumers to request their products, and physicians to prescribe them. Moreover, the very terms in which persuasion takes place in health and medicine 12 themselves condition outcomes. … Rhetorical criticism identifies the persuasive element in the discourse of health and medicine and asks, “Who is persuading whom of what?” and “What are the means of persuasion?” (Segal Health 1-2) By focusing on the role that persuasion plays in health and medical discourse, RHM recognizes the role of rhetoric in shaping the way we understand ourselves as ill, or not, or healthy, or not. Second, RHM asks “prior questions.” Prior questions, Segal explains, are questions prior to those typically asked by health researchers: “In the case of cosmetic surgery, for example, before we ask the more obvious medical/health questions—for example, ‘How can it be performed most safely?’ and ‘Should it be covered by health insurance plans?’—we might ask, ‘How are people persuaded to see themselves as improvable by cosmetic surgery in the first place?’” (“Rhetoric” 228). Third, when I say that rhetoric is methodologicaly mutable, I refer to the flexibility of rhetorical-critical methodology, something Segal describes as “an intentionally underspecified procedure, with certain characteristic interests, for the study of persuasive elements, in a wide range of texts, especially in the realm of social action or public discourse” (Health 10). I also borrow from Scott and Melonçon, who note that RHM scholars demonstrate “a willingness and even obligation to pragmatically and ethically adjust aspects of methodology to changing exigencies, conditions, and relationships” (5). Indeed, Burke recommends such an approach to rhetorical critics, advising them to “use all that is there to use” (Philosophy 23). A broad range of methodologies, then, falls under the category of rhetorical criticism, and this is no less true for RHM. One might, for example, undertake a rhetorical history—a “kairology,” defined this way by Segal: “[W]hat captures the rhetorically minded historian’s attention is not only a chronology of events but also a kairology of them: a study of historical moments as rhetorical opportunities” (Health 23). So, for example, Amy Koerber analyzes scientific texts, public health messages, policy documents and interviews with various 13 stakeholders to demonstrate how the public understanding of the best choices for infant feeding changed in North America over the course of decades in the twentieth- and twenty-first- centuries. Jenell Johnson relies on kairology to investigate the changes in the professional and public understanding of lobotomy. She asks not “Why did psychopharmacology replace psychosurgery?” but rather, “Under what conditions were psychiatrists persuaded to choose between psychosurgery and other treatment modalities for mental illness?” (74). Johnson argues that a rhetorical approach to history, specifically the analysis of texts that exemplify national fears about personhood under threat, provides insight into the conditions in which the decline of lobotomy became possible. Performing close readings of texts for rhetorical forms or figures of speech is also a common strategy for scholars working in RHM. For example, Kimberly Emmons, reading a range of texts for metaphor, definitions, stories, and genres, adopts a Foucauldian critical discourse analysis to understand the way depression “functions persuasively in our collective and individual consciousness” (Black 6). She argues that depression itself is a rhetorical phenomenon: it is saturated with language, it is recognized through repeated patterns of reference, and it is a model against which other behaviour is read (Black 15). RHM scholars engage with a range of rhetorical theorists to understand, for example, what assumptions are implicit in particular claims, what values are being used to persuade, and what influence a speaker’s character has on knowledge production. Segal describes, for example, how a critic might “convert an Aristotelian framework for producing speeches into an analytic method for receiving them” (Health 8). Analysis might involve identifying rhetorical occasions (deliberative, forensic, and epideictic), appeals (ethos, pathos, and logos), enthymemes, or other elements of Aristotle’s Rhetoric. For example, in “What, In Addition to Drugs, Do Pharmaceutical Ads Sell?” (2010), Segal argues that although direct-to-consumer advertising 14 (DTCA) for prescription pharmaceuticals seems at first to be a deliberative rhetoric (aimed at increasing consumption), it is also an epideictic rhetoric: drug marketers urge us to consume drugs according to socially praised values such as sociality and productivity. Lisa Keränen analyzes what she calls “contested characters” in the Datagate scandal.7 Keränen offers a three-part framework to analyze characterization: ethos, persona, and voice. She argues that by using this framework, it is possible to understand how the normative behaviour of scientists, the characterization of types of scientists, and the particular individual voices of scientists affected the meanings and outcomes of a science-based controversy (Scientific 7). Both Segal and Keränen adopt a neo-Aristotelian framework and supplement it as necessary in their rhetorical-critical analyses. Burke is another rhetorical theorist that rhetoricians of health and medicine have turned to for critical analysis. Martha Solomon uses Burke’s “grammar of motives”—a pentad of key terms (act, scene, agent, agency and purpose) to analyze articles in medical journals reporting on the Tuskegee Syphilis Project. The project studied the course of untreated syphilis in African-American men. When antibiotics became available to treat the disease, researchers did not offer them to the subject/objects of research. Solomon seeks to explain how, though several publications about the study appeared over the course of its forty or so years, members of the medical community did not object to the methods used. Solomon argues that medical-journal reports on the study deployed conventions of scientific prose that worked to conceal its ethical violations and to perpetuate what Burke calls the “principle of discontinuity,” here between researchers (as agents) and research subjects (as agencies of research and scenes of disease). 7 Keränen uses the term “Datagate” to refer to the controversy surrounding Dr. Roger Poisson, former head of cancer research at Montreal’s Saint-Luc Hospital confessing to falsifying more than one hundred pieces of data used in fourteen US-funded cancer trials during the 1980s. 15 In this dissertation, I use other elements of Burke’s work—the concepts of “orientation,” “altar,” and “piety”—to analyze the rhetoric of health awareness. I offer a framework for conceiving health awareness as a series of orientations: bundles of judgements about what kinds of health should be worshipped (altars) and what beliefs are appropriate for such worship (pieties). I characterize the ideal health of a particular health awareness orientation as an altar of health and the specific beliefs promoted by targeted health messages as pieties. In Permanence and Change, Burke links altars and pieties. According to Burke, an altar, no matter what form that altar takes, requires a ritual act of approach, linked to a normative set of behaviours and an associated sense of what is appropriate, required, and pious to do. Burke describes the link between the altar and pieties: If there is an altar, it is pious of a man to perform some ritual act whereby he may approach the altar with clean hands. A kind of symbolic cleanliness goes with altars, a technique of symbolic cleansing goes with cleanliness, a preparation or initiation goes with the technique of cleansing, the need of cleansing was based upon some feeling of taboo – and so on, until pious linkages may have brought all the significant details of the day into coordination, relating them integrally with one another by complex interpretive work. (Burke, Permanence 75) For Burke, pieties are entangled with orientation. Ann George describes this relationship of piety and orientation when she notes that Burke uses both terms to describe a way of viewing the world. She writes that each term denotes “a perspective or interpretive lens that provides values, motives and goals (that tells us what to do and why)” (George 31). Although at times in Permanence and Change “piety” and “orientation” overlap (and are even defined in terms of each other, such as when Burke describes piety as “a schema of orientation” [Permanence 76]), George suggests that a key difference between these terms is their scope (31). Whereas “piety” 16 provides a “sense of what properly goes with what” (Burke Permanence 75), “orientation” refers to the judgments, thoughts, opinions and viewpoints that a person accumulates to inform their approach to the altar, or “a bundle of judgments as to how things were, how they are and how they should be” (Burke Permanence 23). In what follows, I use the terms “piety” and “pieties” to refer to specific beliefs necessary for worship, insofar as they provide a sense of what is pious to do around the altar, and the term “orientation” to name the larger bundle of judgments that informs these pieties. I apply all three of these terms— “orientation,” “altar,” and “piety”—to the realm of health, and specifically to health awareness. Each health awareness orientation encapsulates both an altar, that is, what iteration of health to worship, and its pieties, or the beliefs that shape a sense of what is pious to do around this altar. I extend Burke’s concept of the altar to describe the ideal of health encompassed by a specific health awareness orientation. Pieties provide a sense of how to worship: they are the specific beliefs that shape what it is pious to do around an altar of health. As I show in the following chapters, different health awareness orientations rely on and maintain different understandings of health (altars), and as such, provide multiple, and at times contradictory beliefs (pieties) on how to behave to secure, or, conversely, to guard against, particular health states. I identify three orientations of health awareness: Optimization, Preparedness, and Revelation. These orientations each provide a framework for interpreting given situations in the pursuit of health. The pieties provide specific beliefs necessary to worship (and to achieve) the iteration of health as the ultimate term. For example, Chapter 1 explores health awareness in terms of the orientation of Optimization. This orientation’s specific pieties— that more movement is always better, and that time is a resource to be managed—provide an approach to an altar of health as a socially and physically fitter (optimized) self. 17 I am not the first rhetorician to extend Burkean altars and pieties into the realm of health to illuminate how we are advised to understand and conduct ourselves in relation to health. Importantly, Marika Seigel, in The Rhetoric of Pregnancy, uses the Burkean framework of altars and pieties to analyze pregnancy “manuals” from the early 1900s to the early 2000s and understand how such texts have defined particular identities for pregnant women. Seigel does not include “orientation” in her analysis. Rather, Seigel relies on articulation theory8 as a way of understanding how pregnancy manuals describe an identity as meaningful at a certain historical moment, and how this might facilitate or constrain certain actions (24). For Seigel, the pregnant woman behaves a particular way around the altar of pregnancy, and these behaviours are a reflection of her sense of what it is pious to do as a pregnant woman (Seigel 25). Some of the pieties that Seigel identifies in these manuals include the piety that the fetus is separate from the pregnant woman’s body (46) and as a consequence the rights of the fetus may conflict with or supersede the rights of the mother (50); the piety that medical knowledge about pregnancy is expert knowledge (56); and the piety that pregnancies must be managed, which includes, at times, disciplining the pregnant body (43). As Seigel argues, these pieties of pregnancy provide a sense of how to worship at the altar of pregnancy. I suggest it is possible to imagine Seigel’s “altar of pregnancy” as an altar of health, determined by the health awareness orientation of risk-averse pregnancy. The altar of health under this orientation would be a healthy fetus and mother, and its pieties might include the beliefs that pregnant bodies can become sites through which risks are managed and that when the pregnant woman is not seen to be adequately working to discipline her own body, prenatal-care specialists may impose such discipline. 8 Articulation theory is a cultural studies theory and methodology used to account for the material consequences that make up ideologies. Seigel relies on Stuart Hall to explore how discourse binds people to their sense of identity in concrete ways. 18 By tracing how the pieties of pregnancy change as different pregnancy manuals come into and go out of style, Seigel reminds us that pieties are not static. Thomas Rosteck notes that when pieties shape our perception they are functionally stable. Rather, pieties come into and fade from existence depending on their use and relevance (Rosteck 98). Pieties, he writes, “are not immutable or inert givens; they are created by human makers as they interact with their fellows and with the world. So, pieties are processes as well; they come to be, change, and pass out of existence in accordance with the situated interests of human communities” (Rosteck 98). Orientations also change. One example of this process is the rise and fall of the germ in twentieth-century America. Nancy Tomes traces the effects that the science of bacteriology had on the household practices of women in America and explains that the cultural understanding of germ theory was shaped in part by the persuasiveness of medical reformers and advertisers. It is possible to understand early twentieth-century anxieties about germs and microbes as a health awareness orientation of Germ-Consciousness: a particular understanding of the relationship between germs and dirt. Germ-Consciousness’s pieties provided a sense of what was pious to do around an altar of health as sanitized, hygienic, and germ-free.9 These pious practices included purchasing packed foods that were associated with terms such as “pure,” “air tight,” and “dust proof” (Tomes 168). I use Tomes’ work as an example of how we might apply a Burkean framework to historical health awareness orientations. The following chapters apply this framework to current health awareness orientations. Methodology Rhetorical study provides an invaluable set of tools for describing what it means to be aware of health, and for tracing from where health awareness messages originate. As I show, 9We still have a range of products that proclaim themselves to be “antibacterial,” and as M.M Brown has explored—and the rhetoric of handwashing is an ongoing component of public health communication. 19 health awareness messages are not limited to non-profit, public health, or governmental sources. When, at the beginning of this project, I started thinking about health awareness, I began to notice that I had regularly been urged to be aware of my health by a variety of commercial organizations, often unexpectedly, as it was not clear how exactly these organizations related to health. When I walked past a billboard on the side of the road, SunLife Financial offered to assuage my worries about type 2 Diabetes by encouraging me to take an online test. An ad in the window of a corner store implored me to be aware of vaping, since “Vaping is legal but we can’t talk about it.”10 I began noting—riding on the bus, browsing the Internet, watching television, listening to the radio, walking down the street—whenever I was urged, explicitly or implicitly, to be aware of something. I responded to these prompts by visiting websites, watching promotional videos, and ordering free brochures. As I gathered this corpus of health awareness materials—websites, videos, discussion forums, brochures, and others—I noticed not only that the materials were authored by non-profit and corporate bodies11 alike, but also that there was a consistency in the kinds of messages—for example, implicit definitions of health and strategies for its achievement—across these sources. My analysis, then, focuses on comparisons between the targeted health messages of non-profit public health campaigns and corporate entities. I analyze a health and fitness campaign alongside wearable technology marketing, two colorectal cancer awareness campaigns alongside critical-illness insurance marketing, and a Lyme disease awareness campaign alongside DTC genetic-test 10 This ad directs its user to a website, where the site declares “We stand strong with adult smokers who want to learn about potentially less harmful alternatives to smoking” (Imperial). This campaign is sponsored by Imperial Tobacco Canada Limited. This vaping message is extremely problematic. Vaping may turn out to deliver a major health crisis. For example, the first case of illness linked to vaping in Canada, in which an Ontario teen was put on life-support, was reported in September 2019 (Dubinksi). 11 It has been well-established that pharmaceutical corporations produce a large amount of health awareness material. However, the role that non-pharmaceutical corporations play in producing health awareness materials has remains undetailed. 20 marketing.12 The differences in the kinds of sources (and by extension, the motivations of each) allow me to more easily able to trace the specific pieties of each health awareness orientation. While the rhetoric of health awareness is by no means limited to one context, I focus on materials that can be found online. When I refer to materials that can be found online,13 I refer, of course, to the World Wide Web. As many scholars have established, there are multiple versions of what counts as the World Wide Web. The retrospectively named Web 1.0 is often characterized by “passive” websites, that is, users seek already-produced information, and Web 2.0 emphasizes user-generated content (Conrad et al. 24). The materials I analyze in the subsequent chapters include multimedia content generated by ParticipACTION, Fitbit, Colorectal Cancer Canada, Manulife, BMO, RBC, Canadian Lyme Disease Association, and 23andMe. In Chapters 1 and 3, I include some user-generated content, but I focus primarily on already-produced information—materials produced by health authorities, non-profits, and corporations. I read through the online materials produced by these organizations, and I noted if and when they defined health, offered instructions, or used epideictic rhetoric (language of praise or blame). I gathered these specific statements, claims, and provocations and analyzed them to understand what ideal of health they affirm and what beliefs they rely on and reinforce as necessary to achieve their ideal of health. As the Internet becomes more integrated into our lives, it becomes an especially rich site for observation and analysis. Carolyn Handa writes, “The Web has come to surround us, the degree of its ubiquity sometimes threatening to make invisible the rhetoric and cultural influences reflected therein” (2). I follow Handa’s call for a rhetorical approach to Web pages in which we apply our existing knowledge of verbal rhetoric and read them critically: “We can 12 Each chapter details the organizations and the materials that I analyze. 13 Throughout this dissertation, I use the terms “online,” “the Web,” and “the Internet” interchangeably. 21 begin to ask how the visual components of the Web pages contribute rhetorically to the pages’ texts, to what the pages reveal and reflect about the individuals and cultures that create them, as well to what degree the online pages function as successful examples of digital rhetoric” (22). In the subsequent chapters, I extend Handa’s discussion of Web pages and approach a variety of online materials as rhetorical texts and interrogate how these elements work together to emphasize a particular understanding of health and the right way to pursue it. Many rhetorical critics, especially those working on the rhetoric of health and medicine, have shown that the Internet is ripe for rhetorical analysis. The Internet provides access to information (Spoel), provides platforms for users to share stories and advice (Opel, De Hertogh), and provides a space for “sufferers” to critique the biomedical system (Dumit “Illnesses”). RHM scholars have also shown that websites function to construct and establish an online presence by enabling the public to access relevant information (Spoel 265), thereby recruiting audiences (Kopelson 11). Dawn S. Opel and Lori Beth De Hertogh each suggest that online communities are fruitful, albeit ethically complicated, sites for rhetorical analysis. Moreover, rhetorical critics are aptly positioned to critically engage with the Web. For example, the Web is routinely used to locate and share health information, and as such, it has often been framed as a tool for the empowerment of—and a tool of empowered—patients. Empowerment remains a dominant trope in Internet health discourse. Timothy Omer describes the empowered, passionate “citizen ‘Health Hackers’” who have built a global online community around type 1 diabetes (1-3), while Bertalan Mesko and Zsuzsa Gyorffy explain the “E” in “E-patient” can stand for “electronic,” “equipped,” “enabled,” “empowered,” “engaged,” and “expert” (2). But as Segal notes, this dominant representation of Internet health as empowering is insufficiently complex. She argues that the “Internet-health user” is not simply empowered by the Web, but remade by it, and remade in a way that does not necessarily make 22 her a good consumer or decision maker (Segal “Internet” 352). Segal’s work exemplifies the contribution that rhetorical critics may make to ongoing Internet health discourse. One of the challenges of conducting rhetorical analyses of online sites, especially over time, is that websites and blogs can, and do, change without warning.14 However, providing website links is not always a concern for scholars who analyze websites. For example, in her analysis of two different websites dedicated to breast cancer activism—Breast Cancer Action (BCA) and Breast Cancer Fund (BCF)—Karen Kopelson provides lengthy descriptions of the sites but does not include links to the sites themselves. Describing BCF’s website, she writes, “Here we are greeted by a smiling (interracial, heterosexual) couple against the backdrop of a sunny kitchen. The caption beside them reads, ‘Prevention starts here: Breast cancer prevention can start in your kitchen’” (115). Kopelson’s descriptions of the website, rather than a link to the website itself, provide the basis for her analysis. In the following chapters, I provide links to the websites and videos that I analyze, but I also follow Kopelson’s approach and provide thorough descriptions of the pages that I analyze. This way, if, or when, the links break,15 my readers will still have a sense of what the sites looked like at the time of their appearance. As Handa acknowledges in her introduction, although in between the time of writing and publication, Web addresses or URLs of some Web pages may have changed, the evidence still applies (15). 14 In the span of writing this dissertation, ParticipACTION updated its website and removed two blog posts that I had used in my analysis. Upon seeing this, I emailed ParticipACTION and requested access to the posts. Although I was able to obtain PDFs of these posts, they are no longer available on the Web. 15 And while not the purpose of this dissertation, the impermanence of websites raises methodological quandaries for those of us using websites as sites of research. For much material I reference in the following chapters, I have been able to use The Wayback Machine, a digital library of internet sites. However, I became aware of this tool partway through my research and because of this have not been able to secure all the materials I reference. 23 Chapter Outline In the next three chapters, I describe three orientations of health awareness—Optimization, Preparedness, and Revelation—and their related sets of pieties.16 In Chapter 1, I analyze the websites of ParticipACTION, a publicly funded health and fitness campaign, and Fitbit, a corporation that produces wearable technologies. I show that these organizations provide their audiences with instructions for self-conduct in the pursuit of health through two pieties: that more movement is always better, and that time is a resource to be managed. Through these pieties, ParticipACTION and Fitbit’s websites each reify an altar of health where health is represented as a socially and physically fitter (optimized) self, always just out of reach and attainable in the future. In this chapter, I also develop my argument that critical descriptions of health awareness must move beyond the explanatory power of neoliberalization of health. Rather than positing this as its conclusion, this chapter understands neoliberalism as the “scene of immanent force” (Stewart 1) upon which our lives play out. In Chapter 2, I focus on the orientation of Preparedness and its pieties: that knowing one’s risk guards against surprise, that screening is beneficial because it uncovers disease, and that knowing about symptoms facilitates early detection. Together, these pieties provide an approach to an altar of health where health is understood not as the absence of disease, but as the management of it. I juxtapose three different kinds of marketing: a conventional cancer awareness video, “Reduce Your Risk for Colorectal Cancer!” that encourages preparedness for diagnosis; a cancer awareness campaign called “Endangered Butts,” which provides the same set of pieties but in a way that camouflages ideas of death and disease with enthymeme, puns, and euphemisms; and a set of critical-illness insurance marketing materials, which I suggest 16Because these pieties are characterized by their orientation, I refer to the pieties of Optimization, pieties of Preparedness, and pieties of Revelation. This is not to say that these pities and orientations are the same or do the same work. Rather, the “pieties of Optimization” name the pieties of the orientation Optimization. 24 relies on the same set of pieties, but deploys them in a way that promotes preparedness for the challenges of critical-illness survival. In Chapter 3, I focus on the health awareness orientation of Revelation, as well as its pieties. I juxtapose the websites of Canadian Lyme Disease Foundation (CanLyme), an organization formed to raise awareness about Lyme disease in Canada, and 23andMe, a direct-to-consumer (DTC) genetic testing service. I identify three pieties of Revelation: that a para-human actor17 may determine a current health state; that received-facts about the encounter with this para-human actor provide certification of the health state; and that each instance of revelation requires a new cycle of proselytizing and persuading. The orientation and its pieties rely on and reinforce an altar of health that is characterized not by the absence of disease, but by the acknowledgement of a health state already in play. In the Conclusion, I discuss the value of a critical approach to health awareness itself, addressing how awareness seeps into everyday life. Specifically, I provide two examples of “failed” health awareness. First, I discuss DSM 5’s description of Illness Anxiety Disorder and show that the diagnostic criteria for Illness Anxiety Disorder pathologize the very behaviours that certain pieties of health awareness demand. Second, I present the recent case of “Baby Ezekiel,” whose parents were prosecuted for not recognizing the signs of meningitis, and I show this story is as much about health awareness—namely, the wrong health awareness orientation—as it is about failure to seek appropriate medical care or moral responsibility. Through these cases, I emphasize the importance of a nuanced understanding of health awareness. I show that the very beliefs and practices that are celebrated, encouraged, and in some cases, required by 17 My use of the term “actor” here invokes Actor Network Theory (ANT). I use the prefix “para-” here (in its meaning of “analogous or parallel to, but separate from or going beyond, what is denoted by the root word” [“para-” 1]) to nuance the designation of “non-human” that often accompanies the term “actor” in the context of ANT. As I explore in Chapter 3, “non-human” does not quite capture the complexities of the relationships between human and tick and human and DNA. 25 health awareness orientations are, in certain cases, the same beliefs and practices that are pathologized and even punished. In other words, health awareness not only provides information about possible health harms and benefits, but also informs us about what types of people we are, what types of belief and behaviour are admirable or reprehensible, and what undertakings are responsible or negligent. My discussion of these two cases emphasizes the importance of a nuanced understanding of health awareness and the recognition that such messaging comes to us from disparate and multiple sources. This dissertation, then, offers a way of approaching health awareness by asking: What are we invited, even required, to do as subjects of health awareness? It is not my purpose to account for every health awareness orientation, nor is it to name every piety. But I will describe some of the most pressing, and most prevalent, ways in which we are invited and urged to be aware of health. In doing so, I will problematize assumptions that awareness is always in the service of personal and public good. 26 CHAPTER 1: OPTIMIZATION The Fitbit, and other wearable activity monitors, are increasingly understood as devices of self-surveillance, self-responsibility, and self-management (see Deborah Lupton The Quantified Self, “Apps as Artefacts,” “M-Health”). Fitbit devices and their data collection are often invoked in discourses of meritocracy as users try to “get ahead” (Charis Thompson), while others argue that such devices participate in training people to be good consumers and biocitizens (Fotopoulou and O’Riordan 54, Millington “Fit”) and encouraging fat panic, normative femininity, and patriarchal beauty standards (Sanders 39-42). As these studies show, Fitbit users are often held personally responsible for managing their own health. Moreover, as users are encouraged to share their data through online communities (Lupton “M-Health”), users are increasingly responsible for monitoring others’ health by comparing posted fitness goals and results, and participating in motivating or encouraging online discussions (Rainie and Wellman). What I wish to contribute with this chapter is to explore, through a rhetorical lens, how wearable technologies are not only devices of self-surveillance, self-responsibility, and self-management, but are also artifacts of health awareness. And as I show, as artifacts of health awareness, their marketing relies on many of the same rhetorical appeals—specifically, rhetorical pieties—as a Canadian public health and fitness campaign, ParticipACTION. Health awareness is not limited to the realm of public health campaigns. In this chapter, I will nuance broader health awareness as a series of temporal and epistemic orientations, increasingly mediated through technology, affectively charged, and extensively commodified. By analyzing together the websites of a publicly-funded health and fitness campaign and the marketing websites of wearable technologies, I show that these organizations provide their audiences with a sense of how to conduct themselves in the pursuit of health, where health is 27 represented as a socially and physically fitter (optimized) self,18 always just out of reach and attainable in the future. ParticipACTION, a non-profit organization, and Fitbit, a transnational corporation, both describe their organizational goals in terms of activity. ParticipACTION’s “About” page begins with the declaration, “An active life is a better life,” and the rest of the website provides literature and promotional materials that explicitly promote health and fitness. The organization encourages fitness by emphasizing the importance of movement over exercise, educates by providing guidelines for required daily activity, and informs by producing reports that link physical activity with health. Fitbit’s website explains that the company’s mission is “To empower and inspire you to live a healthier, more active life” (“About”). Fitbit designs, produces, and markets Fitbit activity trackers which, when used as intended, can help users to achieve health and fitness goals by documenting their activity, exercise, sleep, weight, and more (Fitbit “Home”). Both ParticipACTION and Fitbit promote and rely upon what Nikolas Rose calls “optimization”: acting in the present to secure a desirable future (Politics 6).19 This chapter asks, in the words of Segal, a “prior question” (“Rhetoric” 228): I precede the question, “How can health awareness about fitness be more effectively communicated?” with the question, “How are people persuaded that health awareness about fitness is important in the first place?” To explore this question, I apply Burke’s concepts of “orientation,” “altar,” and “piety.”20 I extend this framework to health awareness, ideals of health, and specific values promoted by targeted health messages. I characterize health awareness as a series of orientations, each orientation contains an ideal of health (altar) and beliefs that provide a sense of what is 18 For a discussion of the ways that fitness can be implicated in concepts of social fitness, see M.M. Brown; for a discussion of the conflation of thinness and fitness, see Kathleen LeBesco; Marilyn Wann; Charlene D. Elliot; and Julie Guthman. 19 In The Quantified Self, Deborah Lupton provides an excellent mobilization of this term in her chapter “An Optimal Human Being.” 20 See the introduction for a fuller discussion of these terms. 28 pious to do in pursuit of this ideal (pieties). Different health awareness orientations provide different bundles of judgments of what health should be and how to attain it. ParticipACTION and Fitbit both rely upon and reinforce the health awareness orientation of Optimization. This orientation promotes an altar of health where the ideal health state is understood as temporally distant and expansive, and as “more than”: one can always be faster, earlier, and fitter. The altar of health promoted through the orientation of Optimization, then, is always just out of reach—an endlessly expanding, moving target. “Pieties of Optimization” are the specific values announced by ParticipACTION and Fitbit that provide a sense of how to worship at Optimization’s altar of health. Optimization has two key pieties: that more movement is always better; and that time is a resource to be managed. I argue that the health awareness orientation of Optimization has a complex and deeply ambiguous influence on understandings of ourselves and our relationships to our health futures. As I will discuss in greater detail below, I also argue that an adequate description of this influence needs to move beyond the totalizing explanatory power that the concept of the neoliberalization of health has exerted on the critical literature. My focus is on ParticipACTION and Fitbit’s websites.21 The first is a Canadian non-profit organization, and the second, a transnational tech company. I have selected these two apparently disparate organizations, because each is a dominant iteration of its class: ParticipACTION is one of the longest-running and best-established health and fitness non-profit organizations in Canada; Fitbit is one of the most successful wearable-tech companies. It is precisely because of their differences that I have selected these sites for comparison: because they differ in so many respects, I can more readily trace specific pieties of Optimization in their messaging and show that these pieties circulate broadly. I analyze ParticipACTION and Fitbit’s 21 “Websites” refers to the webpages themselves and also includes materials available for download on the websites. 29 websites, approaching each as a locus of rhetorical pieties. ParticipACTION’s website, designed for a general audience, provides up-to-date information about fitness campaigns and the organization itself. Fitbit’s website provides product information, downloadable materials about their corporate wellness program, and a blog, each to sell a product. I identify ways that ParticipACTION and Fitbit promote values towards their particular ideal state of health, and I identify places where each website provides its audience with implicit or explicit instructions to secure a healthier future and reinforces beliefs about appropriate worship. In each case, health is represented as a future-oriented, socially and physically fitter state, properly pursued by changing behaviours related to movement and time. This chapter begins with a survey of recent scholarship about ParticipACTION and Fitbit and a critique of health-studies arguments that end, rather than begin, with a claim about neoliberalism. I then explain the concept “optimization,” which leads to my analysis of the ParticipACTION and Fitbit websites. ParticipACTION and Fitbit ParticipACTION22 was initially funded by the Government of Canada from 1971 until 2001, when it was shut down due to budget cuts (Galloway). In 2007, ParticipACTION was relaunched with a grant of $5 million from the Canadian government (“Ottawa”). The first iteration of the organization generated significant historical and analytical scholarship. In 2004, The Canadian Journal of Public Health published a supplement focusing entirely on ParticipACTION: The Mouse That Roared: A Marketing and Health Communications Success Story. This supplement relies on the metaphor of ParticipACTION as a “kind of experimental 22 The Saskatchewan Council for Archives and Archivists has compiled a digital archive, The ParticipACTION Archive Project, that has become a key resource for critical analyses of the first iteration of ParticipACTION. Organized into five areas (campaigns, resource materials, community projects, impact, and structure), this archive is designed to educate its users about the role Canada’s ParticipACTION program played over three decades in improving the health and lifestyle of “the average Canadian” (“Home”). Critical analyses drawing on this archive have touched on a range of themes, including post-WWII anxieties about healthy citizenship (Drover; MacNeill), gendered images of fitness (MacNeill) and desire for increased productivity under a welfare state (Drover). 30 mouse” (Edwards “No Country” 6) and adopted techniques from social marketing and health communication. The articles in this supplement attend to various aspects of ParticipACTION, such as marketing strategies (Edwards “No Country”) and theoretical underpinnings (Bauman et al.) of the campaign, as well as factors leading to the organization’s success (Lagarde “The Mouse”) including community mobilization (Costas-Bradstreet, Edwards “The Mouseketeers”) and bilingualism (Lagarde “The Challenge”). These articles celebrate the effectiveness of ParticipACTION’s physical activity campaigns. Compared to the first iteration of the organization, ParticipACTION’s 2007 relaunch and its subsequent campaigns have been the subject of far less scholarship. The limited scholarship addressing the more recent iteration of this program focuses on structural evaluation (Gainforth et al.; Plotnikoff et al.), effectiveness (Craig et al.; Deshpande et al.), and possible directions for the program itself (Faulkner et al.). A critical analysis of the more recent iteration of ParticipACTION’s promotional activities has not yet been published. Fitbit23 was founded in 2007 by James Park and Eric Friedman, who launched their first tracker at the end of 2009. In December 2009, a profile of the Fitbit activity tracker (Naditz) appeared in Telemedicine and e-Health, a peer-reviewed journal for all things related to clinical technologies and telemedicine. Since then, scholarly articles tend to approach the Fitbit activity tracker in the following ways: interrogating the effectiveness of the device’s monitoring and data collection (Byun et al.); using the device(s) as a data-gathering tool in larger studies (Nyrop et al.); or understanding the Fitbit activity tracker’s potential for positive interventions in health (Couturier et al.), including increased mobility (Kurti and Dallery), sleep (Montgomery-Downs et al.), and weight loss (Jo et al.). References to Fitbit devices also continue to appear in popular 23 In this chapter, the term “Fitbit” encapsulates two different things: Fitbit, the company; and Fitbit, the tracking device, or rather, series of tracking devices, as Fitbit produces a series of devices with a similar naming scheme, such as Fitbit, Fitbit Ace, and Fitbit Ace 2. When referring to the devices themselves, I will refer to it as “the Fitbit” or use the term “device,” or “wearable technology.” 31 discourse. For example, a simple search for “best wearable devices” in Google produces a long list of tech reviews and consumer reports, with multiple Fitbit devices on every list (Peckhem; Stables; Lamkin; CNet). To date, there are relatively few rhetorical studies of wearable technologies, and these have largely focused on “wearing” as a rhetorical act. For example, in 2016, Rhetoric Society Quarterly (RSQ) published a special issue on rhetoric and wearability. One of the purposes of the issue, according to guest editors Catherine Gouge and John Jones, is to challenge recent scholarship’s focus on wearables as only activity trackers (200). Gouge and Jones argue that this limited definition of wearables may obstruct rhetorical discussions for both a variety of users and a variety of uses. Moreover, this limited definition may constrain understandings of what count as wearable technologies. The essays in the journal address a wide range of wearable technologies (ostomy pouches, breast pumps, and mobile health apps). These devices are defined as wearables because they must be connected to bodies to function properly (Gauge and Jones 201). This definition of wearables is borrowed from Isabel Pedersen, who nuances the often device-centric rhetorics surrounding wearable technologies and argues for a human-centred understanding of wearable technology that encompasses movement, interactivity and beingness. Following Pedersen, contributors to this issue of RSQ grapple with what it means to wear technologies, how wearing provokes rhetorical choices, and how wearing itself is a rhetorical act.24 Tracking devices, like Fitbit, though, are still prime sites for analysis: the sheer number of such devices—which, at the time of writing this chapter, includes 424 unique devices from 24 As one example, Molly Margaret Kessler focuses on the ostomy pouch as a non-optional, non-quantifying, wearable technology and emphasizes that wearing is not always a choice (237). Kessler’s work is important: she expands the category of wearable technologies while also decoupling wearability and choice. As another example, Jordynn Jack considers how gender, space-time arrangements, and design shape experiences of using breast pumps. She argues that a study of wearable technology should not limit itself to questions of how technologies are developed and advertised but must attend to how they are used in practice. 32 266 companies (Vandrico Inc)—and the normalization of tracking one’s movements through applications (apps)25 warrants critical interrogation. Furthermore, “wearing” is not the only rhetorical aspect of wearable technologies. For purposes of this chapter, I am less concerned with wearing as a rhetorical act and more interested in how wearable technologies are rhetorically connected to health and fitness campaigns insofar as they urge a particular understanding of health, achievable through pieties of Optimization. Beyond Neoliberalization One effect of this chapter’s focus on optimization is to look beyond the notion that health and fitness campaigns are a symptom of the neoliberalization of health (see Lupton; Millington; Fotopoulou and O’Riordan; Fullagar). As Kathleen Stewart writes, “The terms neoliberalism, advanced capitalism, and globalization that index this emergent present, and the five or seven or ten characteristics used to summarize and define it in shorthand, do not in themselves begin to describe the situation we find ourselves in” (1). These terms, Stewart explains, do not adequately capture the ordinary affective textures of everyday life and instead describe totalizing systems in which we are always already immersed. According to Stewart, even if these terms refer to forces that are real and pressing, when we describe our current moment through totalizing systems, the result is too overwhelming to be ameliorative. Instead, she proposes that neoliberalism, advanced capitalism, and globalization be imagined as a “scene of immanent force” and not as “dead effects imposed on an innocent world” (1). To reframe neoliberalism as scene rather than conclusion is not to deny its impact on lived experiences. Our current moment is characterized by an increase in the centrality of the market, a decrease in government intervention, and an 25 There is an easy slippage between wearable technologies and the software applications that are used with the devices to make sense of the biometrics gathered, as apps are both inseparable from devices but also can be considered unique products (Millington “Fit” 1187). The number of health-related apps (often referred to as “mhealth” apps, or mobile health apps) has increased in recent years, with more than 165,000 available on the Apple store (Devlin). 33 emphasis on consumer choice, each of which impacts our relationships to health: patients are reframed as consumers, health is represented as a commodity, and health services are increasingly privatized and individualized (see, Lupton and Petersen, Jette et al., Rose). ParticipACTION and Fitbit are each complicit in the ongoing neoliberalization of health (for ParticipACTION see Drover; MacNeill; for Fitbit see Lupton “Apps,” The Quantified, “Self-tracking”; Millington “Fit,” “Smartphone”). Fitness campaigns and wearable technologies encourage individuals to take responsibility for their health: among other things, fitness campaigns encourage a specific amount of recommended exercise per week, and wearable technologies explicitly facilitate the tracking and recording of this exercise. Both campaigns and tracking technologies frame physical activity as a choice—to exercise or not to exercise—and, in turn, activity takes on a personal and moral responsibility in which diseases associated with poor fitness (such as obesity, diabetes, heart disease) become understandable through the rhetoric of choice26 and risky behaviour.27 Stewart’s provocation—that the terms “neoliberalism,” “advanced capitalism,” and “globalization” do not adequately describe our emergent present—highlights a pattern in Critical Health Studies, in which thoughtful and specific analysis by a critical health scholar moves towards the now-familiar conclusion that health messaging (including health education and other terms that stand in for health awareness) is not merely educational, but participates in the 26 Certain surveillance technologies, or technologies used as surveillance, also outsource responsibility. If a person is wearing a tracker that reminds her to stand after 20 minutes of sitting—because that is the tracker her employer supplied and required her to wear—personal choice is not necessarily a factor. In fact, there’s an employer override of personal choice. 27 There is, of course, much empirical evidence that obesity, diabetes, and heart disease are, in part, related to lifestyle choices (see West et al.; Coppell et al.). As Catherine Belling explains, public health discourse strives to reinforce personal responsibility by informing individuals about risk, which is often understood as active: “We may not feel that we are at risk unless we think of ourselves as taking a risk, and the volition that this implies brings a sense of responsibility and blameworthiness into individuals’ ideas about determining the probability of disease” (164). In other words, if one knows that one is at risk for the above-named conditions, behaviour not focused on risk aversion is understood as problematic. As Belling explains, public health discourse reinforces the expectation that “complacency will end in preventable disaster” (164). 34 neoliberalization of health. Through the lens of neoliberalism, critical health scholars have analyzed health communication about the obesity epidemic and fatness (see LeBesco “Neoliberalism”; Jette et al.), fitness (see Ayo), healthy girls (see Smith and Paterson), fitness apps (see Lupton; Millington; Fotopoulou and O’Riordan), and diet (Otero et al.). Many of these critical engagements conclude with arguments that health messaging makes individuals responsible for their health states, frames health as the inevitable result of good or bad choices, and obscures systemic and institutional barriers to—and social determinants of—health. While I agree that public health messaging often reinforces the neoliberalization of health, I also share Stewart’s uneasiness concerning the centrality that this term plays in shaping contemporary analyses. A conclusion that we live under a totalizing system is not always immediately helpful—rather, it has the potential to overwhelm and to make ameliorative action appear futile. Rather than concluding that fitness campaigns and wearable technologies are symptoms of neoliberalism, perhaps understanding neoliberalism as the scene upon which our lives play out will provide us with a more manageable course of action, or at least the possibility of inciting change. As I detail in the conclusion of this chapter, Annemarie Mol’s idea of a “logic of care” provides one course of action. Mol suggests we should act in the present to strive after as much health as one’s situation allows. Before discussing the pieties of Optimization, then, I briefly address the role of individual responsibility in their production, setting the scene of the neoliberalization of health upon which my analysis rests. Understanding neoliberalism as scene means viewing initiatives like ParticipACTION, and companies like Fitbit, as not only producing but also produced by a view of health as the responsibility of health citizens.28 28 As Petersen and Lupton explain, “The ‘right to health’ is rephrased as taking on personal responsibility for one’s health by accepting and adopting the imperatives issuing forth from the state and other health-related agencies” (65). If the role of the state was once imagined as, in part, ensuring the health and welfare of its citizens, the new public health agenda, as Petersen and Lupton call it, aims to promote health through education about bodily risk so that citizens can make informed choices. Here, the idea of citizenship and fitness are linked, exemplifying what Alan Petersen and Deborah Lupton call “healthy citizenship” (64). This notion of healthy citizenship is based on 35 ParticipACTION’s website exemplifies neoliberal health philosophies, encouraging healthy citizenship and working to produce good bio-citizens. As Christine Halse explains, the term “bio-citizen” is characterized by the performance of active citizenship, the demonstration of rationality, and the assumption of personal responsibility for one’s physical health in order to care for the physical and economic health of the nation (53). This production of bio-citizens is evident from the campaign’s slogan: “It’s time for Canada to sit less and move more” (ParticipACTION “ParticipACTION”) and in the site’s celebration of Canada 150 (Canada’s 150th anniversary as a nation), where website users are encouraged to move their bodies in “150 uniquely Canadian activities” (ParticipACTION “150 Activity”). ParticipACTION’s Canadian audience is interpellated through invitations to be active in specifically Canadian ways, exemplifying what Maurice Charland calls “constitutive rhetoric,” where an audience is called forth and realized through speech itself. Charland draws on Louis Althusser’s idea of interpellation, which describes the process by which subjects are constituted when they are hailed. For example, when a police officer says, “Hey you!” and an individual answers the call, their subjectivity is constituted in relation to that utterance (Althusser 118). Similarly, ParticipACTION’s audience is interpellated, or called forth, when they are encouraged to find their “favourite ways to get active like a Canadian” (ParticipACTION “150 Activity”). Website users are offered a list, generated by Canadians, of 150 activities, including hockey, lacrosse, and basketball, but also activities not traditionally considered sports, such as slacklining, tree planting, and circus arts (ParticipACTION “150 Play List”). By inviting users to “[g]et active like a Canadian,” ParticipACTION’s website exemplifies neoliberal ideas of the healthy citizen and simultaneously constructs an audience of Canadians aspiring to be more fit. neoliberal ideals of rationality, informed choice, and responsibility, where the “pursuit of health is considered both an obligation and a right of citizens” (Peterson and Lupton 64). 36 While ParticipACTION participates in the neoliberalization of health by cultivating healthy-citizenship, Fitbit participates in the neoliberalization of health by commodifying and monetizing health. For example, Fitbit offers what they call “Group Health,” where employee health is equated with earning potential. “Group Health,” advises businesses to “keep employees happy, healthy and engaged by creating an effective wellness program with Fitbit” (Fitbit “Group Health”). By investing in wellness (in this case, investing in Fitbits for employees and a database to oversee employee activity), employers are invited not only to “improve employee health status” but also to “increase employee productivity” (Fitbit, “Group Health”). In a pamphlet explaining how the “wellness experience” works, Fitbit outlines a four-step process, as follows: 1. Fitbit creates an e-commerce experience where employees can choose their tracker. 2. Fitbit applies employer contribution, collects payment and ships the trackers directly to the employee. 3. Employees are instantly invited to enroll in your program during tracker setup. 4. Employees can track their progress and support each other on your program’s dashboard. (Fitbit “Corporate Wellness”) The logic of this program relies on the illusion of choice: employees choose their Fitbit tracker, are encouraged to sign up, and participate in a workplace culture of fitness, support, and teamwork. In other words, employees are offered the choice to be healthy or not, productive or not, and a team-player or not. Here, the rhetoric of choice obscures coercion, as the refusal to participate in Group Health may be equated with poor judgement and irresponsibility.29 This 29 Participation in corporate wellness becomes a marker for identity, particularly normal/healthy and pathological/unhealthy. As with other forms of neoliberalization of health, these identity markers can lead to discrimination and exclusion of those who are unwilling or unable to participate in activities deemed healthy (Petersen and Lupton 25). Neoliberalization of health, and with it the responsibilization and individualization of health, becomes further complicated when participation in healthy behaviours becomes conflated with job performance. 37 exemplifies what Deborah Lupton calls “pushed” self-tracking (Quantified 153), where participation in self-tracking is framed as a choice, but the impetus to track comes from an external source. Or, in a more sinister interpretation, this could constitute “imposed” self-tracking (Quantified 153) where self-tracking is designated as mandatory by an authority. Physical fitness campaigns and activity trackers clearly instance the neoliberalization of health and as such, lend themselves easily to arguments about personal responsibility, choice, and productivity. However, I suggest that by defaulting to such conclusions, we risk sidelining other lines of inquiry. For example, by understanding neoliberalism as the scene upon which self-responsibility and self-government are already entangled with issues of fitness, physical activity, and wearable technologies, I am able to turn my attention to pieties of Optimization and explore the ways that organizations like ParticipACTION and Fitbit shape our understandings of not only health, but also movement, time, and ourselves. Pieties of Optimization In this chapter, “Optimization,” refers to acting in the present to secure the best possible health state in the future. This definition draws on Rose’s understanding of optimization as the moral responsibility of citizens to secure their best futures, and it also draws on the work of Adams et al. Where Rose is primarily interested in how biotechnologies targeting the molecular change what it means to be a biological organism,30 Adams et al. suggest that the scope of optimization is unlimited: “[Optimization] can penetrate to the innermost regions of the body, the 30 For Rose, optimization is the goal of what he terms “technologies of life”: “these new technologies…do not just seek to cure organic damage or disease, nor to enhance health, as in dietary and fitness regimens, but change what it is to be a biological organism, by making it possible refigure – or hope to refigure – vital processes themselves in order to maximize their functioning and enhance their outcomes” (Politics 17-18). Rose focuses his analysis on the molecular: genetic testing and selective implantation of embryos (Politics 19-20). Each of these sites requires specialized biomedical technologies, knowledge, and expertise, and as Rose points out, part of the anxiety over these biomedical technologies of life stems from the increasing ease of access (for some people) to these interventions, and the prevalence with which such practices appear on the market as part of consumer culture. As these developments in biomedicine become more accessible, and as interventions to optimize human life become normative, the very meaning of human life becomes altered by biomedicine and biotechnology (Rose “Politics” 20). 38 outermost regions of the globe, the earliest or latest moments of life, the largest and smallest of measurable things” (256). Optimization is not limited to enhancement at the molecular level, but rather, all things become targets for optimization. Adams et al. write: If optimization entails the effort to secure one’s own, one’s family’s, one’s group’s, or even one’s population’s “best possible future,” it also entails the sense that it must be continually expansive in orientation to do so. That is, optimization means not only maximizing one’s chances for a best possible future but also that the pursuit of the “best possible” is legitimately infinite in its scope and always ongoing. (256) I follow this expanded definition of optimization, and suggest that the rhetorical pieties of Optimization reinforce the ever-expanding domain of health by providing a sense that more movement is always better, and that time is a resource to be managed. More Movement is Always Better Movement features heavily on the websites of both ParticipACTION and Fitbit. Being active is better for one’s health than being sedentary,31 and ParticipACTION and Fitbit both operationalize this information. However, while each organization presents movement itself as a good, each does so by relying on and reinforcing an implicit (and sometimes explicit) logic of Optimization. Both of the sites analyzed in this chapter rely on the piety that one can always be moving more. On the one hand, each site prioritizes the significance of everyday movement over planned, intentional exercise. On the other, each site celebrates movement detected through technological devices and the absence of technologically documented movement becomes an indication of failure to optimize oneself as an embodied human and a consumer. ParticipACTION’s website offers several articles emphasizing the importance of integrated physical activity. Physical activity is contrasted to exercise as “planned, structured, 31 For an overview of current literature on the benefits of activity over sedentary behaviour, see David Thivel et al. 39 repetitive and intentional movement” (ParticipACTION “Why”). This difference is important, according to ParticipACTION, because many people hate exercising, while others believe that exercise alone is enough to be healthy and fit. In many ways, this distinction is useful and positive: it de-emphasizes the importance of gyms and “workouts” and instead refocuses on integrating activities like walking, biking, and hiking into everyday life.32 Fitbit’s marketing echoes this push to integrate movement into everyday life: “Every moment matters and every bit makes a big impact. Because fitness is the sum of your life. That’s the idea Fitbit was built on – that fitness is not just about gym time. It’s all the time” (Fitbit, “Why”). But this latter claim is complicated by the visual loop that accompanies it on the Fitbit website: an interracial couple cooking in their kitchen; a party of six young people dancing; a man climbing stairs alongside an empty escalator; but also a woman on a stationary bike is encouraged by a person who is presumably her trainer, and multiple depictions of people running. Each of these visual vignettes features someone wearing a Fitbit. Fitbit claims that fitness is “all the time,” and also represents many instances of what ParticipACTION calls “exercise”: planned, intentional, repetitive, and structured movement. “Fitness,” as Fitbit calls it, is all the time; but another way of understanding this claim is that fitness could be all the time: since movement as such is good, one could always be doing, and quantifying,33 more. Activity reminders are a common feature of Fitbit’s wearable devices. Fitbit’s “Reminder to move” feature involves the device displaying reminders “to help you reach an hourly goal of 250 steps” (Fitbit “products”). However, it is not just the display that reminds the user to move; 32 Although these activities are also frequently thought of as “exercise,” ParticipACTION represents them within a binary between exercise (as gym-time) and activity (as movement). 33 Fitbit starts everyone off with a 10,000-step goal (Rosenbaum). The World Health Organization, American Heart Foundation, and the US Department of Health and Human Services have all adopted this figure as their daily activity recommendation (Cox). However, 10,000 steps is an arbitrary figure that originates from a Japanese marketing campaign from the 1960s. While research based on the health benefits of this number have reified this as an ideal target, additional studies have suggested a range of 6,000 to 19,000 steps per day may have long term health benefits (Cox). 40 if a user has not moved 250 steps in one hour, the device vibrates, alerting the user that they are in danger of falling behind their goal. The device itself becomes an agent in the piety that one can always be moving more, as it “nudges you” (Fitbit “what”) to keep moving hourly. As Minna Ruckstein and Natasha Dow Schull argue, many self-tracking device users exhibit ambivalence towards their devices: some users of self-tracking devices wish to take charge of themselves, and also appreciate the delegation of responsibility for self-regulation and motivation to their devices (267). In other words, not only the user, but also the devices themselves, become responsibilized. The “Reminder to move” feature requires the user to manually opt-out of these reminders, suggesting that there is an assumption behind the device design that Fitbit users want to be informed of how often they’re moving and if they’re in danger of not moving enough. As Trevor Pinch and Wiebe Bjiker have noted, however, technologies are not always used in the ways that designers intend: different users may attach different uses and meanings to different artifacts. And as users establish new uses and meanings for technologies, these associations can be reinforced and re-embedded in the technologies themselves, as designers come to inscribe these user-generated associations back into designs (see Pinch and Bjiker; Kline and Pinch). For example, in a study aimed to determine reasons for sustained use of Fitbits, Sander Hermsen et al. found more than 50% (of 711) study participants quit using their trackers after 6 months (17).34 Daniel Harrison et al. argue that activity trackers have high levels of abandonment due to tracking limitations and the aesthetic appearances of the devices. However, users deviate from intended use in ways beyond simply not using their devices. For example, Farzana Dudhwala has documented that when faced with “bad numbers,” some admit to feeling trapped by tracking technologies and resort to doing laps in their kitchens at night to achieve 34 Reasons for abandonment were sometimes merely technical—and sometimes devices were lost. 41 their goals (121-22). In other words, Fitbit’s design implies that users want to know if they are moving enough as part of their everyday lives. However, users do not necessarily adhere to these assumptions, in some cases abandoning their devices and in others, binge-walking at the end of the day to meet their targets. Such complex relations between users and their devices suggest that Fitbit’s activity reminders do not uncomplicatedly respond to consumer desire. Rather, the tensions and resistances illustrated by these studies clarify the extent to which this feature exemplifies and reinforces a piety of Optimization: that one could always be moving more. ParticipACTION shares this piety. On the main page of ParticipACTION’s website,35 users are presented with a looped video, shot from a first-person point-of-view, depicting a bike moving through a bright, wooded area (ParticipACTION “ParticipACTION”). This clip displays two white hands holding the grips of bicycle handlebars, and the camera follows the steering movement of the bike. In white text, the following words appear over the moving image: “Welcome to our website. Just don’t stay too long” (ParticipACTION “ParticipACTION”). Text roughly half the size of the previous message is displayed underneath: “It’s time for Canada to sit less and move more” (ParticipACTION “ParticipACTION”). The message that one could, or should, be doing something physical (such as going outside and riding a bike), especially when held in opposition to sedentary activities (such as browsing the web), establishes a conundrum for the website visitor. On the one hand, the website invites you to peruse its contents. On the other hand, it reminds you that you really ought to be doing something else: riding a bike outdoors, or at the very least, moving. These initial interactions with ParticipACTION’s site reinforce the piety, establishing for its users a sense of what behaviour is appropriate and inappropriate, exhorting that being active is not only possible but desirable, and that being desk- 35 As I discuss in the introduction, analyzing text from the web comes with its own set of challenges, as web addresses or URLs of pages may change or “break” over time, and websites are often updated to include new graphics, text, and other content. ParticipACTION’s homepage is one such example as its opening graphic has changed since I wrote this chapter. 42 bound is a failure to optimize oneself. In this instance, sedentary behaviour is always a missed opportunity for physical activity. This piety appears elsewhere: as I analyze the website, I leave the site open on my computer desktop, and after 5 minutes, a new window pops up in the bottom-right corner of the page, and states “Don’t get too comfy. LET’S GET UP AND MOVE” (ParticipACTION “Activity”). When I click on the box, instructions appear: “Move more with shadow boxing…bend your knees and put up your dukes,” “Move more with side to side stretching,” or “Move more with squats. …Stand up from your chair and get it out of the way” (ParticipACTION “Activity”). Illustrations accompany these instructions, offering guidance in proper techniques for boxing, stretching, or squatting. The activity reminder on ParticipACTION’s website suggests a conflation of movement on the webpage and movement of the user’s body, as this activity reminder is triggered when a certain amount of time passes without the homepage registering any scrolling or clicking. Activity on the webpage—namely, mouse movement—becomes a stand-in for the physical activity of the user. The web interface becomes a surrogate for measuring a user’s activity, where movement of any kind is celebrated, even when that movement involves sitting and scrolling through the website, and sedentary behaviour is registered by a lack of mouse movement. While one may assume that no movement on the webpage could suggest that the user has left the computer to do something else, this lack of web browsing is taken to mean that the user herself is not moving at all. Fitbit cashes in on the same logic evinced by ParticipACTION’s website: the absence of movement is an indication of failure. For example, like ParticipACTION’s, Fitbit’s website has a window that appears after a period of inactivity on their page. Fitbit’s pop-up does not encourage you to leave the site and get moving, but rather, it does prompt you to start a chat with a Fitbit sales specialist “to assist you in finding the right product” (Fitbit “Products”). Whereas ParticipACTION’s website conflates a lack of movement on the homepage and a lack 43 of physical movement, Fitbit registers a lack of movement on their website as missed selling opportunities. On both ParticipACTION and Fitbit’s sites, active browsing supersedes the user’s off-screen actions. Whether the user is using her body or consuming Fitbit products through means other than the website becomes irrelevant. What matters is the ability of that movement to be detected through the websites. As Brad Millington notes, most fitness apps involve the convergence of technologies and bodies, as they track the body’s movements across space and over time (“Smartphones,” 485). Millington introduces this convergence of technologies and bodies as a way of expressing concern about trends towards self-surveillance, as data becomes collected and monitored (486). What Millington does not address is that this body-technology convergence doesn’t just change the way data is produced, but it actually changes how we may understand movement itself: as mediated through technology. As an example, Lupton writes in The Quantified Self about a man who, having discovered that he’d left his Fitbit behind and hadn’t counted his tourist steps through Paris, wanted to cab back to his hotel and start his walking over again (81-2). In the case of the Fitbit, movement counts only when the user is wearing their device. If steps aren’t counted, they don’t count. In the case of ParticipACTION, the interface between human and screen becomes a site where there is a one-to-one relation: movement on the screen translates and is registered as movement on behalf of the user. The presence of movement becomes dependent upon technology: movement documented, recorded, or measured by technology is celebrated and extra-technological movement becomes irrelevant. 44 Time is a Resource to Be Managed ParticipACTION and Fitbit share a second piety of Optimization: that time is a resource to be managed.36 That is, they imply a relationship to temporality in which the passage of time is an opportunity to secure goals and to accumulate health, and it is imperative to act immediately to do so. ParticipACTION’s and Fitbit’s users are also urged, in a version of this piety, to intervene early in their children’s lives to ensure their offspring are able to secure their best possible futures. In fact, these sites represent children both as beings with their own health goals, and as beings for whom adults, especially mothers, are responsible. The piety that time is a resource to be managed exemplifies a relationship to temporality that Adams et al. call an “anticipatory regime” (249). Anticipation describes a forward-looking state where the effects of an anticipated future are felt in the present. Whether or not these futures come to pass is irrelevant, because by anticipating such states and responding to them in the present, their effects are made real. Adams et al. write as follows: Anticipatory regimes in their specificity can conjure many versions of the future, but what all speculations share is the orientation towards and claim to the future as that which matters. Anticipation is not just betting on the future; it is a moral economy in which the future sets the conditions of possibility for action in the present, in which the future is inhabited in the present. Through anticipation, the future arrives as already formed in the present, as if the emergency has already happened. (249) This concept of anticipation applies not only to events or states with a negative valence, but also 36 The piety that time is a resource to be managed is distinct from the concept of “time management.” Whereas “time management” refers to planning how long one spends on specific day-to-day activities, “that time is a resource to be managed” emphasizes time as resource, more akin to a “standing reserve,” in the Heideggerian sense. Heidegger suggests technology as a standing reserve by explaining that is not a “good” in and of itself, but rather, only “good for” something. Technology is at hand to be used (see The Question Concerning Technology 319-324). The piety that time is a resource to be managed suggests that time is something to be used in the service of securing one’s best future. 45 to desirable events or states, such as having a child or falling in love. What both valences share is a mingling of hope and fear: hope for one outcome, fear of another. As Adams et al. state, “[T]he anticipatory regime cannot generate its outcomes without arousing a ‘sense’ of the simultaneous uncertainty and inevitability of the future, usually manifest as entanglements of fear and hope” (249). The piety that time is a resource to be managed capitalizes on this confluence of hope and fear: hope that optimal health is attainable in the future; and fear that optimal health is out of reach. Goals—both setting and achieving them—are central to the ways that both Fitbit and ParticipACTION establish the piety that time is a resource to be managed. The differences in how these two organizations represent goals and goal-setting allow this chapter to form a fuller picture of the piety’s complex relationship to anxiety and urgency. For example, Fitbit’s marketing materials focus on positive goal-setting, and in doing so, cultivate anxiety about negative outcomes and failure. The first piece of text that greets a user on the Fitbit website’s “About Us” page declares, “We're a passionate team dedicated to health and fitness who are building products that help transform people's lives. While health can be serious business, we feel it doesn't have to be. We believe you're more likely to reach your goals if you're encouraged to have fun, smile, and feel empowered along the way.” The transformation Fitbit promises is represented as empowering, because the transformed self is assumed to be an improvement on the present self. The unspecified site of transformation works to address a wide audience, inviting each reader to identify something they aspire to change. Fitbit also asserts that transformation is more likely to take place if that transformation feels fun and empowering. While exercise can inspire such feelings, this assertion also deflects the experiences of those for whom activity may be painful, difficult, or even impossible. In “‘Find Your Fit’: Wearable Technology and the Cultural Politics of Disability,” Julie Passanante 46 Elman argues that Fitbit profits from and reinforces the notion that “able-bodiedness is the only natural and desirable form of embodiment or way of life” (3761). She suggests that Fitbit devices have been so celebrated precisely because they promise “continual optimization of bodies, moods, and growth from the gym to the office” (3761).37 Here, Fitbit’s advertised transformation is goal-dependent. Optimization involves not only imagining a future state-of-being and believing that this state-of-being is achievable with the proper management of time and the right attitude, but also trusting that transformation will make you feel good. While Fitbit focuses on the positive nature of goal-setting, ParticipACTION reprimands: “Too often we say we’re busy, when we really mean we’re distracted. Distracted from our goals, from our health, and from the life we’d rather be living” (“Surprising”). Users are advised to assess their use of time: “How many hours do you spend scrolling through social media? Watching television or Netflix? Checking emails? Conduct a self-audit: where are you spending your time each day? Try to identify all the activities that when you really think about it, you’d rather spend less time doing. And then replace them with physical activity” (“Surprising”). Both Fitbit and ParticipACTION encourage users to act in the present to secure a better future. But where Fitbit promises a seamless optimization of time by merely strapping on a tracking device, ParticipACTION, in passages like these, rebukes its users and urges them to reconceive how they spend their time. This central difference between Fitbit and ParticipACTION’s representation of the relationship between time and goals can be understood through what Lauren Berlant calls 37 Several studies document the use of activity trackers by individuals with low mobility, including nursing home residents (Buckinx et al.), and older adults with low mobility (Cochrane et al.). However, as one post to a Fitbit Forum suggests, using a device without mobility can trouble the conventional user-device relationship: “Is there any way to adjust the settings on the Fitbit for someone who is disabled? I'm not going to be going on any runs or doing any major workouts because I am unable to do this anymore. But my Fitbit keeps yelling at me to get up and run. I still want to track my steps and have it monitor my sleep patterns, but I can't make it happy by going on a jog” (Kuklared). 47 “optimism.” For Berlant, optimism is a structure of attachment (a way of relating) that enables the expectation that being near some thing (whether it be an idea, a goal, an object, a scene, or something else), will help you to become different, this time, in the right way (2). Berlant calls “cruel optimism,” the condition of maintaining an optimistic attachment to that thing, even when that attachment impedes the initial aim or is problematic (1, 24). For Berlant, one primary example of cruel optimism is attachment to promises of the “good life”—promises, for example, of social equality or upward mobility. She argues that although the past three decades in America and Europe have been characterized by a clawing back of post-WWII social democratic promises, people continue to hold on to fantasies of, and strive for, the “good life” (3). Berlant explains that attachments to ideals such as “the good life” are cruel rather than simply inconvenient or tragic because it is difficult to let go of them even as they become more and more distant: “The continuity of its form provides something of the subject’s sense of what it means to keep on living on and to look forward to being in the world” (24). Although the site of attachment may be unattainable, it provides something for which to keep striving. Fitbit’s promise is inherently optimistic – a promise of transformation, empowerment, and fun – and at times, cruelly so, as it denies the lived realities of failing bodies or poverty.38 Whereas Fitbit promises “to empower and inspire you to live a healthier, more active life,” with “products and experiences that fit seamlessly into your life so you can achieve your health and fitness goals” (“About”), ParticipACTION offers a less cruelly optimistic approach: “You need to schedule time for physical activity. No matter how much you hustle, spare time isn’t going to just appear. You have to make the time” (“Surprising”). Moreover, while each website presents goals and goal-setting as a means of performing the piety that time is a resource to be managed, 38 Fitbit is a commercial enterprise, and commercial advertising is full of cruel optimism in advertisements for everything – cars, beer, cosmetics, and more. 48 they represent time in crucially different ways. As I’ve shown above, Fitbit’s website represents time as an opportunity to accumulate health—and simultaneously emphasizes goal-setting, in conjunction with their products, as necessary for this accumulation of health. As I show below, ParticipACTION also emphasizes goal-setting as a strategy to secure better health in the future. However, rather than relying on a logic of seamless temporal accumulation, ParticipACTION relies on a relational temporal logic, requiring its user to actively manage time in the present to achieve fitness goals in the future. ParticipACTION relies at times on a link between time and accumulation—that the passage of time provides opportunities for accumulation—in support of the piety that time is a resource to be managed. For example, in a ParticipACTION blog post entitled “5 Interesting Ways Physical Activity Can Save You Time Every Day,” the idea of lifespan and accumulation is made explicit: “Regular physical activity has been shown to be one of the single best things you can do to live longer. Sitting in front of your television for an hour, on the other hand, has been shown to shorten your life an additional 22 minutes.”39 The use of time in the present (framed as a choice between moving and watching television) is quantified into life expectancy, inviting the user to anticipate their death and act in the present to hold death at bay a little longer. Time becomes knowable as a resource that can be optimized or squandered. While ParticipACTION, like Fitbit, does represent time as linear, progressive, and calculable, the site also offers, sometimes, a more complex understanding of time as relational and re-emerging. One article featured on ParticipACTION’s website proposes that physical activity saves you time by slowing time down: “Almost everyone can relate to the feeling of time 39 This blog post cites an article by Veerman et al., published in the British Journal of Sports Medicine. Veerman et al. used data from the Australian Bureau of Statistics and the Australian Diabetes, Obesity and Lifestyle Study, a national population-based survey, to model impacts of TV viewing time on life expectancy at birth. This study found that, “On average, every single hour of TV viewed after the age of 25 reduces the viewer’s life expectancy by 21.8 (95% UI [uncertainty interval]: 03-44.7) min” (Veerman et al. 927). 49 passing by more quickly as we age. One of the main reasons this perception exists is that as we grow older our brains pay less attention” (“5”). This article suggests that because we engage in routines and have fewer new experiences as we age, we feel that time is quickly passing us by. Here, ParticipACTION’s representation of time resonates with Lina Dib’s understanding of the future that is contingent upon and constituted in relation to the past. Drawing on Karen Barad’s concept of intra-action, in which materials, entities, beings, and things exist through their relations with one another, Dib argues for an understanding of temporality in which the past, present, and future do not exist prior to their relationships with one another (47), but are, instead, constantly emerging and re-emerging through those relationships (64). Dib imagines time as relationally constituted and malleable: the future is always already entangled with pasts and presents. ParticipACTION’s suggestion that you can slow down time, offers, in more colloquial terms, an understanding of time as malleable, relational, and emergent. In light of this understanding, the site’s repeated calls to act now to ensure a healthier future later become, once again, less cruelly optimistic and more complexly relational. The two organizations’ shared piety that time is a resource to be managed becomes especially clear through their representations of children. Since optimization itself implies acting in the present to secure the best possible future, children become both a site of intervention in the present and a measurement of success in the future. Lee Edelman has argued that the figure of “The Child”40 stands in for a collective future, and that we are unable to conceive of a future without this figure (11). Lochlann Jain builds on Edelman: “The Child gains his potency in his abstract permanence and winsome innocence, in his asexuality, in his disconnection from the market and his prepolitical sensibility” (64). Similarly, Pezzullo argues that children, represented by a collective sense of permeability, vulnerability, and banality, are a crucial site to understand 40 Edelman is careful to distinguish the figure of “The Child” from lived experiences of children (11). 50 concepts of futurity (17). For all three theorists, and for ParticipACTION and Fitbit, the representational power of the Child invites us to imagine a better future and urges us to act in the present to secure such a future. As Adams et al. note, “[M]anagement of the future within anticipatory regimes requires projecting even further back into younger years, positing the future as urgent in even earlier moments of organismic development” (253). For Fitbit, children also represent a market opportunity. In the spring of 2018, Fitbit launched a new product, the Fitbit Ace, marketed for children aged eight to 13.41 According to Adams et al., managing the future requires projecting further back into younger years, recognizing the future as urgent in earlier moments of life (253). While fitness trackers for toddlers and babies may seem like something out of a dystopic novel, if futures must be secured in earlier stages in life, such devices may not be far off. As of January 2020, the Fitbit Ace 2, whose marketing states it is appropriate for users aged six and up, is available for purchase in Canada. The featured display on the webpage for the Fitbit Ace features two girls, one mid-cartwheel and one mid-run, and reads “Make fitness fun for kids and the whole family with Fitbit ACE!” This initial image exemplifies the ways the entire Fitbit Ace site deploys girls and family to market their product. Seven separate images feature children on the Fitbit Ace site: one image features only a boy, while four of the seven feature only girls. Of the 13 children shown, nine are girls, and four are boys. This gendering of Fitbit Ace, and the visual use of girls’ bodies to market the product, exemplify what Michelle Murphy calls “the value of a Girl” (Economization 112).42 The very low initial value of the Girl makes her an ideal site for human capital 41 This was not the first experiment with fitness trackers targeted at children. For a brief period in 2017, McDonald’s included fitness bands in their Happy Meals. They were forced to recall these bands due to blistering, skin irritation, and burns (CTV News). 42 In the 1990s, the figure of the Girl emerged as the target of economic intervention. Investing in a girl’s education became understood as an intervention to create more productive workers, reduce future fertility (the problematic assumption in this plan is that an educated girl has more opportunities and will not be married at a young age for the purpose of having babies), lower population growth, and raise GDP per capita (Murphy Economization 112). This investment strategy is based on the concept of human capital. If commodities are things to be bought and sold, 51 investment, with very high potential returns (Murphy Economization 116). The logic of the market, here, underpins the piety that time is a resource to be managed, since acting now, when value is the lowest, suggests a higher “return” in the future. Where, for Murphy, the logic of “the value of a Girl” is particularly focused on first-world/developing-world dynamics, for Fitbit it becomes visible within the context of middle-class North American families. Following Murphy’s logic, the Fitbit Ace page urges that the parent and the wider family unit intervene as early as possible to invest in the girl’s future physical and economic success. When the Fitbit Ace website centres the figure of the girl in their marketing, she is often represented as part of a larger family unit. One of the ways that families can support their girls (and less visibly, their boys) is by teaching them about the importance of activity. As one blurb on the page for the Fitbit Ace 2 proclaims, “Fitbit Ace 2 helps parents and their children understand how physical activity impacts overall well-being and health.” Here, the tracker is central to activity, education, and well-being. Fitbit Ace and Ace 2 both suggest that, without the tracking device, children and parents may not fully appreciate the impact that physical activity has on health. Moreover, on the Fitbit Ace and Ace 2 sites, ideal families are connected families—and since Fitbit defines connection as technological mediation, it becomes imperative to intervene in a child’s fitness as early as possible by enrolling them into the family’s app-based self-surveillance. For example, Fitbit Ace is compatible with a family account app, where parents can “check in” (Fitbit “Ace”) by viewing the data collected by their child’s (or children’s) device. This model of surveillance is offered to parents as a positive intervention in family life: the app promises to “let you know if they’re getting the rest they need” and “[c]onnect with your loved ones on your health and fitness goals” (Fitbit “Ace”). Moreover, Fitbit Ace suggests that a capital refers to the means of production (for example, the machines in a factory). Therefore, human capital is typically defined as the embodied capacities of a person, such as knowledge, skills, health, and abilities, that can produce future economic benefits. 52 family is not really a family until they are technologically connected via Fitbit devices and what they call the Family Account.43 Through this account, parents can “control who they connect with in the Fitbit app, and see how active they are each day” (Fitbit “About Fitbit Ace”). The Fitbit app not only requires a Fitbit Ace to start a Family Account, but the creation of a Family Account is conflated with family itself: to download the app, one must select an icon that says, “Create Family” (Fitbit “Ace”). In passages like this one, Fitbit defines family through the devices and apps themselves, creating an urgency to track one’s family as early as possible. When children appear on the sections of Fitbit’s website that are not explicitly devoted to the Ace, it is almost always in relation to mothers, who are figured as urgently responsible for both their own and their children’s health.44 Fitbit’s blog features articles such as “7 Helpful Fitbit Features All Busy Moms Need” (Kosecki), “4 Ways to Benefit from Your Kid’s Busy Back-to-School Schedule” (Leyton), “Work, Family, Fitness: How One Woman Does it All” (Reece), and “‘My Goal is Simple: Be a Healthy Mum & Role Model for My Kids,’ says Angela M” (Fitbit Staff). These articles feature narratives about new goals for the future, such as being a good role model for one’s kids (Fitbit Staff), strategies for being healthy while ensuring the health of one’s children (Leyton), and even how exercise can make you a better mother: “Exercise makes me think more clearly, and I become a better mother and wife, as well as a more productive professional” (Reece). Throughout the Fitbit website, mothers are held doubly 43 The Family Account is a special setting in a Fitbit account which allows the creation, management, and surveillance of a child account. 44 The responsibilization of mothers for the health of their children, and family, is well-established. As Petersen and Lupton point out, public health messaging often charges mothers with the duty to ensure that the “moral, social, and physical development of their children is maximized” (Petersen and Lupton 77). This responsibilization is especially documented in the context of childhood obesity. Natalie Boero argues that popular and scholarly discourse about the obesity epidemic continues to “mother blame” for the weight of their child (113). Similarly, May Friedman argues that discourses about child welfare overlap with childhood obesity and reify myths of parenting and bodily failures, with specific emphasis on mothers (20). This echoes April Michelle Herndon’s point that “contemporary discussions about the childhood obesity epidemic showcase the still popular notion that women should be the primary caretakers of children, especially where cooking, dining, nutrition and bodies are concerned” (332). 53 responsible for the physical fitness of their families. Put in terms the piety that time is a resource to be managed, Fitbit’s site suggests not only that mothers be active and instill a passion for fitness in their children now, but also that they continue to monitor their children’s progress for the sake of their children’s future. ParticipACTION, like Fitbit, emphasizes the importance of acting now to ensure children are physically active in the future. ParticipACTION suggests “24-Hour guidelines” for people of all ages, including the “Early Years,” ages 0-4. These guidelines emphasize that “best health” is achieved through a balance of moving, sleeping, and sitting (“Benefits and Guidelines”). Guidelines for the Early Years are further categorized: infants (less than one year); toddlers (1-2 years); and preschoolers (3-4 years). Here, parents are urged to make sure that their infants are “being physically active several times in a variety of ways” and that their toddlers and preschoolers have “at least 180 minutes spent in a variety of physical activities” (ParticipACTION “Early Years”). Each of these guidelines concludes with the phrase, “more is better” (ParticipACTION “Early Years”). By following these guidelines, parents are encouraged to act now to secure a future for their children with these outcomes: • Healthy growth • Better learning and thinking • Improved motor development • Higher fitness levels • Increased quality of life • Reduced injuries • Fun! (ParticipACTION “Early Years”) Note that these benefits are modified by terms such as “better,” “improved,” “higher,” and “increased.” This modification—in combination with the guideline’s emphasis that “more is better”—highlights health as an ever-moving, ever-expanding target and exemplifies the piety that time is a resource to be managed. In this example, parents are advised to begin monitoring their children’s movements in the early years to secure a future that is better and improved. 54 ParticipACTION’s website also addresses children and teens directly.45 Where ParticipACTION identifies a “physical inactivity crisis,” one key response has been to cosponsor a “Teen Challenge” with Coca-Cola Canada, targeted at Canadians aged 13 to 19 (“Physical”). The informational materials they have disseminated as part of this campaign seek to persuade their audience to intervene early and secure their own optimal future health outcomes. As an example, “Awareness – Facts” makes two related moves: it informs teens about declining physical activity and lists benefits of physical activity on academic performance, self-esteem, and body image. While both the benefits of physical activity and the negative consequences of inactivity are drawn from cited, quantitative studies,46 ParticipACTION’s materials present the harms of inactivity as statistics, while they communicate the benefits of physical activity in qualitative terms. As Theodore Porter points out, when worldly phenomena are translated into numbers, the resulting statistics are understood as trustworthy because the rules for doing such translation are understood as rigorous and sanctioned by experts (Trust 6). The difference in these two modes of appeal closely correlates to the temporal logic of the piety that time is a resource to be managed. Where that piety employs the figure of the Child, the relational and emergent model of time that I have identified in some elements of ParticipACTION’s site disappears in favour of a more straightforward logic of accumulation. By presenting negative facts in the form of statistics, the fact sheet gives them a particular power to enforce an urgent temporal demand in the service of the piety that time is a resource to be managed, while the qualitative nature of the positive statements leaves open the promise that such intervention will lead to boundless accumulation. 45 Although children and teens are not the same demographic, ParticipACTION categorizes people into the following groups: The Early Years, 0-4; Children and Youth, ages 5-17; and Adults, ages 18-64; and Adults, ages 65+ (“ParticipACTION”). 46 For example, the point on self-efficacy, body image and self-esteem is taken from an article in Human Movement, “Self-Efficacy, Self-Esteem and Body Image as Psychological Determinants of 15-Year-Old Adolescents’ Physical Activity Levels” by Kołoło et al. 55 According to Joseph Dumit, once a fact has been introduced, one necessarily enters into a relationship with it (Drugs 65). ParticipACTION’s statements that “[o]nly 23% of teens 13-17 years old actively commute to school,” and “73% of 13-17 year olds are watching tv, playing video games and on the computer after school” (“Awareness) facilitate a relationship between audience and fact. The teen audience is encouraged to ask, “Am I part of that 76%?” This relationship, in turn, creates an urgent moral imperative to act. As Dumit notes, “The moral grammar of health information is that facts will be acted upon. This grammar precludes resistance: if you do not act on what you know, you must be doing so for social and psychological reasons. You are confused, embarrassed, intimidated, or ignorant” (Drugs 64). In the case of ParticipACTION’s statistics about teen activity, if you are part of the 76%, then there is a moral imperative to reduce television consumption. Failure to do so is an individual failure. The qualitative descriptions about the benefits of physical activity of teens build on the piety that time is a resource to be managed. The lack of statistical grounding both eliminates the possibility that any reader might fall outside of the statistical range that demarcates the dangerously inactive, and leaves open the possibility for potentially limitless accumulation (of positive health and social outcomes). Even if one is among the 23% of students who actively commute to school, they are still enjoined to act now to increase your activity: “Highly-involved athletes are less likely to engage in behaviours such as smoking and recreational drug use as compared to non-athletes”; “Psychological factors such as self-efficacy, body image and physical self-esteem are significant predictors of physical activity among adolescents”; and “Get active and you can achieve better grades – increased time in physical activity is associated with better academic achievement” (ParticipACTION “Awareness”). Like ParticipACTION’s guidelines for the Early Years, if more means better, and in this case, more physical activity means better 56 grades, there is no threshold to cross, no achievement too high. Intervention could always be happening earlier—and cannot happen too late—to secure these better futures. Conclusion Taken together, ParticipACTION and Fitbit make visible an orientation of health awareness: Optimization. Each of ParticipACTION and Fitbit promotes an altar of health where health is defined as a socially and physically fitter (optimized) self, always just out of reach and attainable in the future. Each of ParticipACTION and Fitbit relies on and reinforces the pieties that more movement is always better and that time is a resource to be managed. These pieties are anxiogenic insofar as they perpetuate a cruel optimism that the future holds a better self. Furthermore, they ignore the possibility of sickness and limited abilities, and the inevitability of ageing, while providing an orientation of Optimization that is, by definition, unachievable. If more movement is always better, and acting now ensures better health later, there is no achievement too high, and arguably, no end to achieve. Rachel Sanders and Mol each offer some possibilities for resisting the cruel optimism of these pieties of Optimization. Sanders, for example, suggests that wearable technologies such as the Fitbit offer opportunities for thinking about the body in a way that aligns with feminist body theories: 47 “If self-trackers could release themselves from targets tied to corporeal ideals and adopt experimental outlooks, they might be able to employ digital self-tracking devices not to discover their authentic selves, nor to perfect or fortify their inherently flawed or risky bodies, but to learn about their bodies as they are eternally (trans)-forming” (56-57). Sanders proposes a liberating digital body project—purposefully “goal-unoriented” (56)—where a user of digital tracking technologies would “surrender herself to an open-ended and temporally unbound 47 As described by, for example, Elizabeth Grosz (Volatile Bodies), Rebecca Coleman, Carla Rice, and Annmarie Mol and John Law, these theories share a sense that bodies are malleable, emergent, and relational, rather than static or objective. 57 transformative experience” (56). But while Sander’s project explicitly positions itself against Optimization and its pieties, it relies, in its ultimately goal-oriented imprecation to choose mindfulness and awareness, on the cruel optimism Berlant warns against. Self-tracking, “unmoored from goals informed by health and beauty norms,” nevertheless positions its users as “mindful” consumers and producers of data, even if that consumption takes place “in a spirit of openness and non-attachment to outcome” (Sanders 56). While Mol shares with Sanders a commitment to the idea of bodies as in flux, she more explicitly embraces the realities of fat, ageing, failing, and decline. When Mol writes about patients and diseases, she advocates for a “logic of care” rather than what describes as a “logic of choice.” Although my own analysis is not about patients and diseases, Mol’s logic of care is relevant to my view of optimization. Whereas a logic of choice positions patients as rational consumer-citizens and health-care providers as unflappable professionals dispensing information, the logic of care attends to the messy, mortal, and fleshy aspects of life (and death). Regarding the distinction between a logic of care and a logic of choice, Mol writes: When it calls patients “customers” the logic of choice opens up splendid panoramic views. From the top of the mountain you see no suffering. The language of the market contains only positive terms. Products for sale are attractive. Tellingly and non-neutrally, they are called “goods.” The logic of care, by contrast, starts out from something negative: you would prefer not to have diabetes. And if you do, you will never be healthy again. But the fact that health is out of reach does not mean that you should give up. The active patient that the logic of care tries to make of us is a flexible, resilient actor who, by caring, strives after as much health as her disease allows. What the result of the joint activities of a joint care team turn out to be is uncertain. Diseases are unpredictable. The art of care, therefore, is to act without seeking control. (Mol Logic 32) 58 Sanders would replace anxiogenic self-tracking towards optimal outcomes with self-tracking in the service of mindful and judgement-free awareness. Information about one’s biometrics becomes its own goal, and a state of mindfulness or acceptance does nothing to unsettle the logic of choice positioning people as consumers and participants in the production and consumption of data. Mol’s logic of care does not call for such radical non-attachment. Instead, it “strives for improvement, while simultaneously respecting the erratic character of disease” (Mol Logic 31). This logic of care provides a corrective for the cruel optimism of optimization. It suggests acting in the present not to secure the best possible health future for oneself that is, by definition, always out of reach, but rather to strive after as much health as one’s situation allows. Recently, Donna Haraway has argued that discussions of life, living well, and living well together, must include at their center, discussions of death (Staying with the Trouble). Rather than telescoping into a future, we need to “stick with the trouble” to learn how to live and die well together. Mol and Haraway share a commitment to the darker, messier side of life—one that is rendered invisible through pieties of Optimization. In the next chapter, I discuss disease and death as inevitable parts of life by attending to the health awareness orientation of Preparedness exemplified in colorectal cancer campaigns and critical-illness insurance marketing. 59 CHAPTER 2: PREPAREDNESS This chapter contends that critical-illness insurance48 providers, to market and sell their products, take advantage of rhetorical strategies used by cancer awareness campaigns. Specifically, I examine critical-illness insurance marketing from three Canadian insurance providers (Manulife, BMO, and RBC), alongside two cancer awareness campaigns produced by Colorectal Cancer Canada. I focus on the insurance providers BMO, Manulife, and RBC because of their prevalence on the insurance landscape. I focus on Colorectal Cancer Canada’s recent campaigns because of the organization’s prominence in Canada’s public cancer discourse: a special report on cancer incidence by stage, produced by the Public Health Agency of Canada and Statistics Canada in 2018, prompted several news articles and releases urging Canadians to seek screening for colorectal cancer (see “Half of colorectal”; Fayerman; Weeks; Ubelacker). My primary claim is that both critical-illness insurance marketing and cancer awareness campaigns rely on and reproduce a health awareness orientation of Preparedness. Through their promotional messaging, each instructs their audience to prepare for a critical illness and its aftermath by adopting three pieties: that knowing one’s risk guards against surprise; that screening facilitates early detection by uncovering incipient disease; and that knowing about symptoms provides opportunities for diagnosis. These campaigns rely on and reinforce a sense of which beliefs are appropriate to worship at an altar of health, where the ideal health state is represented, not as the absence of disease, but as the successful management of it. While Colorectal Cancer Canada uses the pieties of Preparedness to urge its audience to avoid being unprepared for a diagnosis, critical-illness insurance marketing draws on the same pieties to urge 48 Critical-illness insurance usually pays a one-time lump-sum payment following the diagnosis of a condition covered in the provider’s policy. While some employers offer a form of critical-illness coverage, this often takes the form of long-term disability benefits, where a portion of the employee’s monthly salary continues to be paid in the event that illness or disability prevents the employee from working. Critical-illness insurance is marketed to the individual as additional protection. 60 preparedness for survival in a context of anxiety and scarcity, the solution to which is presented as purchasing critical-illness insurance. Through a comparative analysis of these three pieties, I argue that Colorectal Cancer Canada and critical-illness insurance marketing represent unpreparedness, rather than cancer, as the exigence, or the problem to be overcome through public discourse. In rhetorical theory, an exigence refers to a problem that needs to be addressed. Rhetorical theorist Lloyd Bitzer defines exigence as “an imperfection marked by urgency; it is a defect, an obstacle, something waiting to be done, a thing which is other than it should be” (6). According to Bitzer, there are rhetorical and non-rhetorical exigences. Exigences are rhetorical only if there is the possibility of changing or modifying an outcome through discourse. Events that we have no ability to change are non-rhetorical. Colorectal Cancer Canada and critical-illness insurance marketing both represent cancer as a non-rhetorical exigence—that is, as out of our control and not ameliorable through discourse. Such a representation may seem counterintuitive, at least in the case of Colorectal Cancer Canada, as cancer awareness campaigns appear to be predicated on the assumption that it is possible to ameliorate cancer through discourse. If one becomes “aware” of colon cancer, one might choose to have colonoscopies that allow polyps to be removed before they become cancerous. In this example, if public discourse persuaded one to undertake the colonoscopy and ameliorate their cancer situation, then this could be understood as a rhetorical exigence. Other discourses, however, treat cancer as a non-rhetorical exigence: cancers happen, regardless of, and often in spite of, actions taken to prevent them. Of course, discourse shapes understandings and treatments of, and approaches to, cancer. For example, metaphors such as cancer as war49 provide doctors and oncologists with language to describe themselves as fighting to save patients, and provide others 49 For a discussion of this metaphor, see Lois Agnew; Judy Segal “Public Discourse”; and Ulrich Teucher. 61 with language to describe cancer patients either as survivors, or, as having “lost the battle.” Nevertheless, for many discourses, the biological event that is cancer—the malignant division of cells—is represented as unmodifiable through discourse.50 Both Colorectal Cancer Canada and critical-illness insurance marketing aim to persuade their audiences that cancer is likely to happen. They invite their audience to anticipate cancer. As I’ve noted earlier, anticipation is, according Adams et al., a temporal orientation, a type of forward looking, in which future states are brought into material reality in the present regardless of whether or not they will come to pass. Each of the critical-illness insurance marketing and the colorectal cancer awareness campaigns discussed in this chapter relies on what Adams et al. call “anticipatory preparedness” (Adams et al. 257). Anticipatory preparedness is distinct from prevention. Whereas prevention involves taking steps to ensure that an event does not happen, preparedness is both speculative and reactive (Adams et al. 257): speculative because it involves acting in the present in hopes of bringing about an imagined future, and reactive because the very basis of this action is in response to an anticipated future event. Colorectal Cancer Canada and critical-illness insurance marketing each provides their audiences with pieties that encourage preparedness. In what follows, I perform three analyses. First, I analyze Colorectal Cancer Canada’s “Reduce Your Risk for Colorectal Cancer!” video, which rather uncomplicatedly relies on and reinforces the pieties of Preparedness. Second, I analyze Colorectal Cancer Canada’s “Endangered Butts” campaign. This campaign relies on the same pieties as the “Reduce Your Risk” video. However, unlike “Reduce Your Risk,” “Endangered Butts” uses euphemism and humour to distance itself from disease and death, and appeal to a thanatophobic public, a public 50 Although cancer is pathologized and represented in terms of “abnormal” cellular behaviour, it is also represented in popular discourse as naturally occurring and out of our control. It is, however, important to note, as Ehrenreich, Segal, Pezzullo, and many others have pointed out, that the representation of cancer as out of any individual’s control works to obscure the environmental factors in cancers (specifically, breast cancer). 62 with a fear of death. I suggest that although this campaign glosses over disease and death, these concepts loom large in their absence. Third, I analyze critical-illness insurance marketing materials from Canadian insurance providers BMO, Manulife, and RBC. In this section, I show that these marketing campaigns draw on the pieties of Preparedness to sell a product that promises personal protection in an atmosphere of anxiety and scarcity. To sell their product, critical-illness insurance marketers represent cancer survival as potentially fraught and anxiety-ridden, make visible the economic determinants of health, and foreground Canada’s ageing population. These insurance-marketing materials deploy the same pieties that appear in Colorectal Cancer Canada’s videos— that knowing one’s risk guards against surprise, that screening facilitates early detection by uncovering incipient disease, and that knowing about symptoms provides opportunities for diagnosis—and urge preparedness, not only for diagnosis, but also for survival in a context of scarcity. But first, I briefly situate my work in the context of Critical Health Studies and RHM. I align myself with a handful of scholars (Ehrenreich, Segal, Pezzullo, King, Jain, Gardner, Duerringer) who have shown that campaigns aiming to educate publics about cancer also work to praise and vilify different subjectivities, reify gendered and racialized stereotypes, and imply individuals’ culpabilities in illnesses. These scholars have taken seriously the ways that awareness campaigns shape cultural understandings of breast cancer—but less attention has been paid to public campaigns regarding other cancers, and few studies have compared discourse on cancer to discourse on other diseases. As one exception, Anette Leibing and Antje Kampf compare public discourse about prostate cancer and Alzheimer’s Disease through the rhetoric of “cardiovascular logic.”51 This term describes the tendency of scientific and popular media to 51 Although Leibing and Kampf do not use the term “rhetoric” in their article, they are interested in the ways that language shapes the way we think and act. As they show, framing conditions as cardiovascular conditions changes the way we understand and treat them. This is, in other words, a rhetorical analysis. 63 explain conditions by their cardiovascular pathways (62-63). According to Leibing and Kampf, cardiovascular logic increasingly shapes our understating of both Alzheimer’s Disease and prostate cancer. They argue that this framing emphasizes lifestyle changes as the primary means of preventing these conditions and responsibilizes individuals for avoiding them. By drawing parallels between discourses pertaining to seemingly different conditions, Leibing and Kampf emphasize cardiovascular logic as an “emergent and all-encompassing, commonly held reasoning” (77). I align myself with Leibing and Kampf’s work by comparing two discourses that have previously been interrogated in isolation from one another. In doing so, I aim to contribute to a growing body of scholarship on the rhetoric of health and medicine by making explicit the link between cancer awareness and critical-illness insurance marketing to understand (to play on the title of Segal’s [2011] analysis of pharmaceutical ads) what, in addition to information, do such campaigns sell? Like analyses of cancer awareness campaigns, many analyses of insurance show how insurance discourse shapes understandings of life (and death). For example, Richard Ericson et al. argue that insurance must be understood in relation to governance, risk, and responsibility. Insurance, they explain, is a technology of governance, and defines how people act: “The risks that are defined, produced, taken, and managed by the insurance industry always include moral assessment of the people and harms involved. Insurance as governance is primarily focused on the regulation of moral risks” (Insurance as Governance 10). These moral risks are produced through actuarial practices of classification and probability calculation (Ericson et al. Insurance as Governance 10). Statistical risk provides a standard of normalcy, and those who deviate from the norm pose a risk to others (Ericson et al. Insurance as Governance 10). This statistical norm is entwined with an ethical norm. As Ericson et al. write, “In this respect, all actions that are classified and calculated by insurance occur under a description of moral risk” (Insurance as 64 Governance 10). When risks are moralized, they are also framed in terms of responsibility. In the context of life and health insurance, individuals are contractually impelled into health and wellness practices, while those who make claims against their policies are treated as offenders, subject to higher premiums and deductibles, or even no insurance (Ericson et al. “The moral hazards” 551). Some scholars have studied life insurance as a way of tracing shifts in broader social values. For example, Viviana A. Zelizer analyzes the early life insurance industry, and argues that life insurance “redefined death as an economic episode and life as an economic asset” (Morals and Markets 65), and her study focusing on children’s life insurance provides insight into the transformation in the value of children’s lives.52 Sarah Quinn explores the rise of the secondary market for life insurance53 in the 1990s. She argues that as the secondary market for life insurance has continued to expand, attitudes towards this market have changed from revulsion to rationalization, as technologies of life insurance have created a rationalized, distant experience of the market, rather than a moral one (774). These studies share an understanding of life insurance as a reflection of larger social values and illuminate the richness of insurance as a topic for analysis. Although critical-illness insurance is increasingly being offered by insurance companies across North America, it has received comparatively little scholarly attention, and what has been written is often evaluative (see Longo; [Ozkok] Dodd et al.; Eling et al., Dodd and Streftaris) or educational (see Baione and Levantesi; Hardy; Gatzert and Maegebier). By focusing on critical-illness insurance in Canada, I highlight the market-oriented traits of this particular insurance in 52 As Zelizer argues, in 18th-century America, a child was economically valuable as a future labourer and as security for parents, and by the mid-19th century, children were “economically ‘worthless’ but emotionally ‘priceless’” (“The Price” 1037). 53 The secondary market for life insurance refers to the buying and selling of life insurance policies. A policyholder may sell their insurance to a third party, who may claim the payout upon the initial policyholder’s death. 65 the context of a larger publicly funded, single-payer health care system.54 And while rhetorical critics have begun to turn their attention to insurance—for example, J.C. Lee has shown that the blend of information and advertising in Blue Cross Blue Shield health insurance marketing relies on an illusion of empowerment while simultaneously disempowering the individual—critical-illness insurance has not, as yet, been the subject of any published rhetorical analysis. By pairing rhetorical analyses of cancer awareness campaigns and critical-illness insurance marketing, I show that this insurance marketing relies on the same appeals as cancer awareness campaigns. In their promotional materials, Colorectal Cancer Canada and critical-illness insurance marketing each rely on and reinforce a sense of what is pious to do to worship an altar of health where health is manifested as the successful management of cancer. “Reduce Your Risk!” Colorectal Cancer Canada’s whiteboard animation video,55 “Reduce Your Risk for Colorectal Cancer!” promotes the pieties of Preparedness that knowing one’s risk guards against surprise, that screening facilitates early detection by uncovering incipient disease, and that knowing about symptoms provides opportunities for diagnosis. The assumption here is not that cancer is ameliorated through public discourse, but rather, that cancer is likely to happen, and when it happens one must be prepared. In other words, the pieties of Preparedness are in the service of anticipation. Or, as this video suggests, preparedness provides a means to avoid being killed by cancer. 54 Canada’s health care system consists of 13 provincial and territorial health insurance plans that provide health care coverage to Canadian citizens, permanent residents, and some temporary residents. These systems are administered at the provincial/territorial level, within guidelines set by the federal government. Depending on the province, dental and vision care may not be covered but are often insured by employers through private companies. Paramedical services (including physiotherapy, speech therapy, chiropractor, and massage) may be ensured by employers through public companies as well. 55 This style of video depicts an author physically drawing an illustrated story using a whiteboard (or similar surface) and whiteboard pens. Such videos used time-lapsed drawing and stop motion animation, and these animations are often narrated. 66 The “Reduce Your Risk” video begins by inviting viewers to consider whether or not they are at risk56 for developing colorectal cancer. This invitation to consider one’s risk introduces the viewer to the first piety of Preparedness: that knowing one’s risk guards against surprise. A voice narrates, “Many Canadians are at risk for developing colorectal cancer but don’t know it,” while an illustrator personalizes this statement by asking a question, writing “are you at risk for colorectal cancer?” A negative answer— “no, I am not at risk for colorectal cancer”—is actively undermined by the video’s narration. Dumit reminds us, “Risk, after all, is something I cannot feel; I must be informed about it to have any experience of it at all” (Drugs 118). With the narrator’s statement that “Many Canadians are at risk for developing colorectal cancer but don’t know it,” viewers are implored to reconsider their relationship to risk. Rather than understanding themselves as risk-free, viewers are asked to imagine themselves in terms of unidentified risk. This video’s warning against undetected risk makes it difficult for a viewer to answer definitively in the negative; an answer of “no,” may as well be “I don’t know.” Either way, the beginning of this video establishes the piety that knowing one’s risk guards against surprise—in this case, the surprise of a diagnosis. Although death is not the inevitable result of a colorectal cancer diagnosis, being prepared for the possibility of diagnosis is represented as a way to avoid a diagnosis, and in turn, death. As an example, after informing the viewer that many Canadians don’t know whether they are at risk for developing colorectal cancer, the video’s narrator states, “Colorectal cancer is the second biggest cancer killer in Canada.” This video does not caution its viewers that people die from cancer, but rather, that people are killed by it. Cancer is granted agency, and this video presents 56 Although “risk” is central to Colorectal Cancer Canada’s video, to what exactly that term refers blurs as the video proceeds. As Catherine Belling argues, in public health messaging, “risk” refers to the statistical probability of a person developing a condition, while in common usage “risk” has connotations of behaving in a risky or unsafe way: “public health communications may rely, then, on complex locutions that blur the popular and specialized meaning of ‘risk’” (168). In “Reduce Your Risk for Colorectal Cancer!” the term “risk” has multiple meanings and referents, and often blurs statistical probabilities with behavioural, lifestyle, and genetic factors. 67 knowing about risk as a way to guard against being killed by cancer. The video continues as the narrator says, “The great news is, this type of cancer is preventable, treatable and beatable. So, learn the warning signs and reduce your risk.” Here, if colorectal cancer is the second biggest killer in Canada, and this cancer is preventable,57 treatable, and beatable, then learning about the symptoms of colorectal cancer will reduce one’s risk not of developing colorectal cancer, but of being killed by colorectal cancer. This first piety, that knowing one’s risk guards against surprise, relates to the second piety of Preparedness: that screening facilitates early detection by uncovering incipient disease. This second piety exemplifies the slippage between being at risk and having a disease that often occurs in public health messaging (see Dumit Drugs and Belling A Condition). In the case of Colorectal Cancer Canada’s “Reduce Your Risk” video, when the video’s narrator says, “If you think you may be at risk, ask your doctor about getting screened,” those who think they may be at risk are encouraged to seek medical interventions. As Dumit notes, once a risk is identified, it becomes imperative to treat that risk as if it were a disease in itself (Dumit Drugs 118). As Catherine Belling notes, “We have redefined the notion of ‘patient’ to include not just the sick person, but the potentially sick person as well, and we have expanded the purview of medical care from existing disease to future disease” (167). Not only does this video exemplify the slippage between risk and disease, but it also employs enthymeme to link being at risk, getting screened, and having cancer. In rhetorical theory, the enthymeme refers to a three-part syllogism from which one premise has been omitted. A syllogism is an argument in which a conclusion is drawn from two premises: a major premise and minor premise. If the syllogism is valid, the premises compel conclusion. The enthymeme is 57 Although this video describes colorectal cancer as “preventable,” prevention is not the intended goal here—prevention is overridden with claims about colorectal cancer being “treatable and beatable,” a claim which necessitates the existence of cancer to treat and beat. 68 a rhetorical syllogism: it persuades because it relies on the audience to supply an omitted premise (usually the major premise). For example: “Since Socrates is man, he is mortal,” is an enthymeme. “All men are mortal” is the major premise. “Socrates is a man” is the minor premise. “Socrates is mortal” is the conclusion that can be deduced from these premises, and the major premise that all men are mortal is supplied by common knowledge. “Reduce Your Risk” relies on enthymeme to link risk, getting screened, and beating cancer. The narrator of “Reduce Your Risk” follows the statement, “If you think you may be at risk, ask your doctor about getting screened,” with, “The earlier you catch colorectal cancer, the greater your chances of beating it.” Here, there is a premise—if you’re at risk, get screened—and a conclusion—detecting cancer means beating it. This video omits, and allows the audience to supply, the premise that screening catches cancer, and reinforces the piety that screening facilitates early detection of disease. This video does not represent screening as a preventative measure. While colonoscopies and other screening procedures can be preventative—they may catch and remove pre-cancerous polyps—they are not presented as such in this passage. Early detection is predicated on two ideas: first, that cancer may be lurking undetected inside one’s body, and that detecting it early will result in effective treatment; and second, that leaving it undetected means the cancer will grow and, perhaps, spread. This first idea is made clear when the narrator suggests, “The earlier you catch colorectal cancer, the greater your chances of beating it.” While the narrators speaks, the video shows a hand writing “90% of colorectal cancer can be cured with early detection,” underlining the word “cured,” and circling the words “early detection.” The piety that screening facilitates early detection by uncovering incipient disease is reinforced by the video’s suggestion that leaving cancer undetected means that cancer will grow and spread. 69 The third piety, that knowing about symptoms provides opportunities for diagnosis, builds on the importance of early detection present in the second piety. Part of the “Reduce Your Risk” video describes how colorectal cancer develops and spreads and urges its viewers to watch for symptoms. This video shows a hand drawing black circles on an illustration of the organs—first, on the colon, then on the rectum, then on the liver and lungs—while the narrator explains, “Colorectal cancer develops in the cells that line the colon or rectum and can spread to other parts of your body.” While the video shows cancer spreading from colon to lungs, the narrator says, “Symptoms and signs of colorectal cancer may include blood in the stool which you may or may not know is there, as well as abdominal cramping.” The video then shows a hand writing, “Symptoms can include: blood in stool, abdominal cramping.” Here, the third piety of Preparedness is emphasized: knowing about symptoms provides opportunities for diagnosis. The video suggests that knowing, and noticing, signs of colorectal cancer will result in a visit to a doctor with the symptoms, which will result in a diagnosis. In this video, knowing one’s risk, getting screened, and knowing the symptoms all work together to lead to the diagnosis of colorectal cancer, which increases one’s chances of “beating it” – or not being killed by it. The emphasis on treating and beating cancer and screening to detect cancer early implies that people will develop cancer and in some cases, have already developed cancer. Colorectal Cancer Canada’s video, “Reduce Your Risk,” relies on and reproduces pieties of Preparedness: that knowing one’s risk guards against surprise, that screening facilitates early detection by uncovering incipient disease, and that knowing about symptoms provides opportunities for diagnosis. This video links unpreparedness and death, and suggests that one is more likely to avoid being killed by colorectal cancer by being prepared for the possibility of diagnosis. 70 “Endangered Butts” Colorectal Cancer Canada’s “Endangered Butts” campaign also espouses the pieties of Preparedness. Although both “Reduce Your Risk” and “Endangered Butts” urge preparedness for the possibility of a diagnosis of colorectal cancer, the former prepares its audience for colorectal cancer diagnosis by foregrounding statistics about one’s risk for death and explicating warning signs of disease. The “Endangered Butts” videos espouse the pieties of Preparedness with euphemism and humour, and target a thanatophobic audience, or in Duerringer’s words, an audience with “an overwhelming fear of death and its attendant symptoms of aging and illness” (Duerringer 347). These videos affirm the presence of death through its absence. While Colorectal Cancer Canada’s “Reduce Your Risk” is a single video, the “Endangered Butts” campaign comprises seven videos in total: one thirty-second video that introduces the theme, and six 12-second videos that provide statistics, request donations, and urge early detection. These videos, alongside a link to Colorectal Cancer Canada’s webpage and a “donate” icon, are embedded on a single-page website with a caption: “Get the facts straight from the polar bear’s mouth” (“Endangered Butts”). The first video establishes a motif that each of the shorter videos replicates: after panning across a landscape of water and snow, the camera focuses on what appears to be the head of a polar bear, but which, on close examination, is a drawing also intended to suggest a human backside with the mouth where the thighs come together. This talking polar bear gives advice on saving an “endangered” population: those with colorectal cancer. After 19 seconds of a continuous shot of the “bear” walking towards the camera, the following text appears: “26,800 are threatened every year,” followed by “endangeredbutts.ca” and “Colorectal Cancer Canada.” The “Endangered Butts” campaign includes six additional videos that build on this bear/bare butts motif. These videos also feature close-up shots what at first looks like a polar 71 bear in an Arctic landscape, but which resolve as an image of a polar bear mapped on to a bare human butt. In these shorter videos, the gluteal muscles clench and unclench to suggest the polar bear is speaking. In a deep voice, the bear provides viewers with information about diagnosis and prognosis rates: “Colorectal cancer is a deadly predator. But caught early, it’s 90% curable. If you’re 50 or over, take personal conservation measures. Get screened” (“Predators”); and “If you’re 50 or over, you have to accept the naked truth: you could be endangered. Talk to your doctor and get screened for colorectal cancer” (“The Truth”). One way of reading this campaign is as constitutive rhetoric. In the previous chapter, I described how ParticipACTION invites its audience to “get active like a Canadian,” and in doing so, calls forth an audience of Canadians aspiring to be more fit. Similarly, Colorectal Cancer Canada’s “Endangered Butts” campaign uses the polar bear as a kind of Canadian national image, and the northern landscape as a means to call forth an audience of rugged Canadians. In addition to the nationalism at play here, the “Endangered Butts” campaign relies on the same pieties of Preparedness apparent in the “Reduce Your Risk!” video. By using statistics, “Endangered Butts” exemplifies the piety that knowing one’s risk guards against surprise. These videos use statistics to inform their viewers about risk through coordinated anthropomorphizing and personalization with whole-number ratios. Presenting statistics in terms of whole numbers allows an audience to imagine in terms of “people” rather than mathematical “percent” (Majdik 585). For example, public health infographics often depict the rates of diagnosis visually and invite their viewers to imagine percentages in terms of the number of people in a given population who are diagnosed with a condition. Similarly, the “Endangered Butts” videos represent statistics in terms of whole numbers in order to personalize risk. For example, “Endangered Butts” warns, “Here are the cold hard facts. 24,000 Canadians will be diagnosed with colorectal cancer this year. That’s, like, more than the population of 72 Nunavut” (“Stats”). By presenting the above statistic as a whole number, “Endangered Butts” allows its audience to relate to the probability of developing colorectal cancer. One is actively able to imagine a future scenario in which they, or someone they know, will be diagnosed with colorectal cancer: if 24,000 people will be diagnosed with colorectal cancer this year, it becomes easy to imagine being part of this large population. When the same statistic is presented in terms of percentage of the overall population, the statement is much less staggering – indeed it’s almost reassuring. Reframed in terms of percentage, the statement becomes, “Approximately 0.007% of the population of Canada58 or 0.2% of Canadians 50 years or older 59 will be diagnosed with colorectal cancer this year.” The rhetorical value of absolute rather than relative numbers is well established (see Herbert Simons; Segal “Strategies”), as is the rhetorical deployment of statistics (see Ray Moynihan and Alan Cassels). This fraction of a percent may be less persuasive than its whole number counterpart, as not only does a fraction of a percent have connotations of being a smaller amount, but it becomes difficult to personalize such a statistic by imagining a fraction of a person (Majdik). Here, the personalization of risk by making statistics relevant to humans enables the piety that knowing one’s risk guards against surprise. Belling writes, “To be actively aware of the possibility of disease in one’s own body and those of one’s loved ones is necessarily to imagine that cancer has already begun there or may be about to do so” (169). The ability to imagine oneself, or a loved one, as developing a disease is in part dependent upon the ability to identify with a risk statistic. The main video for the “Endangered Butts” campaign also emphasizes the piety that knowing one’s risk guards against surprise by establishing an enthymeme that is carried throughout the rest of the campaign. This video shows the “bear” (or, the image of a bear on a 58 This percentage is calculated by dividing the occurrences of diagnosis (24,000) by the population of Canada (approx. 36.29 million [Stats Canada]). 59 This percentage is calculated by dividing the occurrences of diagnosis (24,000) by the population of Canadians 50 years or older in 2017 (13,893,911[Stats Canada]). 73 human’s naked backside) walking towards the camera, over which the following text appears: “26,800 are threatened every year.” Viewers are prompted to ask: 26,800 of what are threatened every year? Colorectal Cancer Canada may be relying on the ambiguity of this statistic to generate traffic on their website, as the audience is instructed to visit Colorectal Cancer Canada’s website for more information about what exactly the video suggests is threatened. But the absence of a subject in “26,800 are threatened every year” also establishes a visual enthymeme that is maintained throughout the rest of the “Endangered Butts” campaign. According to visual argumentation scholars, the effectiveness of visual enthymemes depends upon agreement between messenger and audience, shaped by contexts and culture of the people addressed (see Valerie Smith, David Birdsell and Leo Groarke; and J. Anthony Blair). The enthymeme here relies on the audience’s common knowledge that polar bears are endangered species and also on the audience’s ability to see the polar bear as a butt: since all polar bears are endangered, this “butt” must be endangered too. One video, entitled “Predators,” instructs its audience: “Colorectal cancer is a deadly predator. But caught early, it’s 90% curable. If you’re 50 or over, take personal conservation measures. Get screened.” The other, called “The Truth” tells its audience: “If you’re 50 or over, you have to accept the naked truth: you could be endangered. Talk to your doctor and get screened for colorectal cancer.” Early detection that is predicated on the idea that people will develop cancer and in some cases, have already developed cancer. These videos offer being screened as a way of detecting the existence of cancer before it becomes a “deadly predator.”60 Screening is represented as a means by which to detect cancer and potential cancers and by 60 In the introduction to this section, I suggest that the “Endangered Butts” videos omit mention of death to appeal to a thanatophobic audience, and that through this omission, they actually emphasize death. Here, they refer to cancer as a “deadly predator” which includes the concept of death. However, this is in service of the metaphor of cancer as a deadly predator, which is something to be avoided but simultaneously distant. 74 urging screening practices, Colorectal Cancer Canada invokes the piety that screening facilitates early detection by uncovering incipient disease. Although the “Endangered Butts” videos rely on two pieties of Preparedness in ways that mirror “Reduce Your Risk,” the “Endangered Butts” videos represent the third piety differently. While “Reduce Your Risk” is explicit about the details of the disease symptoms (for example, watch for blood in stool), “Endangered Butts” suggests that knowing about symptoms is important but these symptoms are not referred to explicitly. The “Endangered Butts” videos avoid mentioning specific colorectal cancer symptoms and instead rely on euphemism and humour to communicate the third piety of Preparedness. The tendency to euphemize body parts in order to draw attention to a type of cancer is a feature of many public health campaigns. Cancers are often named with reference to the body part where the cancer is located. Lung cancer, breast cancer, stomach cancer, and skin cancer are all examples of this naming convention. However, as the National Cancer Institute states, “Cancer is the name given to a collection of related diseases. In all types of cancer, some of the body’s cells begin to divide without stopping and spread into surrounding tissues.”61 The attachment of cancer to a specific body part names the location in which the cancerous cells are found, and the body part is pathologized. When the body part itself is considered indecorous, campaigns deploy euphemisms to make cancer, in some cases, publicly palatable, and in others, cute or sexy.62 As we know, symptoms of colorectal cancer include blood in the stool. As one 61 As Lochlann Jain points out, “cancer, in all its nounishness, refers to everything…and nothing” [ellipses in original] (4). In Malignant: How Cancer Becomes Us, Jain approaches cancer as a set of relationships—biological, economic, institutional, medical, affective, and more—to explore how understandings of cancer work culturally. Cancer, she argues, is not only a noun: “cancer is also a verb, an adjective, an invective, a shout-out, indeed, a grammar all of its own” (223). 62 Deurringer argues that “Save the Ta-Tas” breast cancer campaign and its merchandise, such as boob lube (a liquid soap product to facilitate at-home breast exams), sexualize breast cancer. Similarly, Peggy Orenstein explores the sexualization of breast cancer, highlighting “Crazy Sexy Cancer,” a documentary about a woman’s self-discovery in search for a cure, and other sexy, pink, merchandise; she states, “I hate to be a buzz kill, but breast cancer is just not sexy” (Orenstein). 75 press release about Canadian colorectal cancer screening non-compliance rates noted, there is a reluctance on the part of patients to discuss a “distasteful subject” like excrement (Hall A14), even in a medical context.63 By referring to a bodily exterior (butts) rather than an interior (colon and rectum), not only does the campaign disassociate itself from connotations of excrement, but it also works to distance colorectal cancer from the colonoscopy, a procedure associated with anxiety and discomfort.64 The euphemized slogan “Endangered Butts” exemplifies a strategy to make an indecorous set of body parts, and potentially graphic symptoms, less so. One particularly salient example of euphemizing indecorous parts is in Ovarian Cancer Canada’s video “Have the #ladyballs to do something.” This 30-second ad features vignettes of women acting “ballsy.” For example, one scene shows a woman challenging her superior in a boardroom, another shows a woman urging her friend to “grow a pair of ladyballs and ask him out.” At the end of the video, the viewer is informed that “women have balls too. And they’re at risk. Ovarian cancer kills five Canadian women every day. Have the ladyballs to do something about it.” Here, and only here, “balls” are explicitly linked with ovaries.65 While Ovarian Cancer Canada’s “Ladyballs” campaign relies on a euphemism for ovaries that reinforces gender binaries and offers misinformation about the biological makeup of female bodies, the “Endangered Butts” campaign euphemizes colons and rectums with the term “butts” to render 63 This press release goes on to quote Macushla Ginivan, of Toronto, a 14-year colorectal cancer survivor, “‘There’s still that stigma out there and I’ve been through it myself,’ said the 70-year-old. ‘What I say now is don’t be embarrassed about stool.’” (Hall A14). 64 Studies have also linked anxieties about colonoscopies to anxieties about masculinity. As one study of male colorectal cancer survivors states, “men may experience colonoscopy or examinations of the rectum as embarrassing or threatening to masculine identity” (Phelan et al. 66), while another study targeting American men’s attitudes towards rectal screenings argues that “many men avoid or dread cancer screening exams involving the rectum because of concerns related to masculinity” (Winterich et al. 308). 65 The very same ladyballs that this ad celebrates for providing one with courage become a source of death from within the female body. This ad emphasizes that women do not die from ovarian cancer. Ovarian cancer kills women, who are constructed as the passive object of active cancer. Moreover, their ladyballs are the site at which this offence takes place. When ladyballs refer to testicles and associated behaviours that have been gendered masculine because of their cultural association with aggression, power, and daring, this term is celebrated. However, when used to name ovaries, “ladyballs” becomes a site of anxiety, vulnerability, and death. This doubled meaning reproduces gendered power imbalances by reinforcing binaries of strong/weak and active/passive. 76 colorectal cancer more palatable and less abject. In doing so, it alludes to the third piety of Preparedness, that knowing about symptoms provides opportunities for diagnosis, without having to mention any of the potentially graphic details. The “Endangered Butts” videos soften the severity of their topic with humour. Humour relies on creating an expectation in the mind of the audience and then upending that expectation (Duerringer 357). For example, Duerringer argues that breast cancer awareness campaign “Save the Ta-Tas” creates a humorous effect by violating expectations: The phrase ‘Save the Ta-Tas’ begins quite familiarly: we are used to being exhorted to save the whales, trees, and the planet. For a typical adult, this form of appeal likely creates expectations for what is to come: One expects to be chided to do more for the environment, for endangered animals or perhaps the developing world. But of course, one’s expectations are immediately punctured when the injunction directs our charitable efforts not to woodland flora, fauna, or the world’s hungry but to breasts. (Duerringer 357) “Endangered Butts” relies on a similar upending of expectations and a slide between endangered body parts and endangered animals. One might expect “endangered species” or “endangered animals,” but not butts. “Endangered colons” or “endangered rectums” does not have the same humorous effect, perhaps coming a little too close to the reality of colorectal cancer. The euphemism of butts for colon and rectum and the unexpected inclusion of “endangered” allows an audience to think about colorectal cancer in a way that is, at least somewhat, lighthearted. “Endangered Butts” also uses humour in their shorter videos. Placed throughout the videos, these puns rely on ideas about endangered species, but also on the visual pun of a naked human bottom that is also a polar bear.66 Visual puns reference the northern landscape, such as “cold hard facts” 66 The “bear” also solicits donations: “Colorectal cancer threatens just as many men as women. He-bear or she-bear, we’re all exposed to the danger. Give” (“He vs. She”); and “read my lips. We need you to help protect those at risk. Think about it. Every dollar you give could save a bare butt from colorectal cancer” (“At Risk”). 77 and “more than the population of Nunavut,” and the naked human backside, such as “the naked truth.” Other puns rely on the idea of endangered species: “deadly predator” and “conservation.” The sixth and final video on the website, entitled “Outtake,” is especially cheeky: “Man it’s cold out here. Anyone have any Chapstick? Sorry. Are, are we on? Give to the Colorectal Association of Canada.” By concluding the video series with a fictitious outtake, Colorectal Cancer Canada works to ameliorate any anxiety that may have emerged from talk about cancer, symptoms, risk, and screening in the previous videos. In this final video, an appeal is made for donations: “Give to the Colorectal Association of Canada.” There is no mention of screening, no statistics about diagnosis, and no mention of colorectal cancer. “Cancer” has been completely erased from this final video: even the name of the association, Colorectal Cancer Canada, is presented as “The Colorectal Association of Canada.” This video solicits donations to Colorectal Cancer Canada from its viewers. However, the video works to achieve its monetary goals not by providing a case for the gravity of colorectal cancer, but by appealing to a thanatophobic public by distancing itself from cancer, disease, and death altogether. Viewers are solicited to donate without being required to think about the implications of their donations. Critical-Illness Insurance Marketing In the Colorectal Cancer Canada videos, the pieties of Preparedness urge preparedness for the possibility of a cancer diagnosis in order to avoid the worst outcome: death. Critical-illness insurance marketing relies on these same pieties to urge preparedness for survival, and its financial repercussions, in a context of scarcity. Critical-illness insurance marketing represents survival as anxiety-ridden. For example, BMO’s brochure for critical-illness insurance emphasizes the possibility of surviving a disease but being nonetheless debilitated and outlines the consequences of not being prepared for such survival. The front page of this brochure asks: “Why critical illness insurance? Are you and your family financially prepared to survive a 78 critical illness?” (1). This brochure invokes two ideas simultaneously: first, it relies on the concept of preparedness rather than prevention, suggesting that critical illness will happen; second, the event to prepare for—that is, the worst-case scenario—is neither critical illness itself, nor death from critical illness. Rather, not dying—survival—and the financial repercussions of survival are represented as the undesirable outcome. Similarly, RBC’s brochure for critical-illness insurance contrasts the uncertainty of survival with the security of death. The brochures states, “Everyone understands the value of life insurance—it provides your family with financial protection in the event of your passing. Yet very few people consider the financial repercussions of recovering from a serious accident or illness. You may be left without regular income and your savings can be depleted” (“Critical” 2). Here, the brochure lists the negative impacts of surviving an illness: financial repercussions, loss of income, and depleted savings. In contrast, death, or “your passing,” is presented as a safe, certain, and financially secure alternative. Where Colorectal Cancer Canada’s videos urge preparedness for diagnosis as a means of avoiding death, critical-illness insurance marketing urges preparedness for survival if death doesn’t happen. Despite these differences, critical-illness insurance marketing uses the same rhetorical pieties of Preparedness as Colorectal Cancer Canada. For example, critical-illness insurance marketing relies on statistics to inform their audience that knowing one’s risk guards against surprise. However, whereas Colorectal Cancer Canada’s videos address risk in terms of the chances of receiving a diagnosis, and in the case of “Reduce Your Risk!” the chances of dying from cancer, in critical-illness insurance marketing people are informed about their chances of survival. For example, the brochure for Manulife’s CoverMe insurance states, “An estimated 177,800 new cases of cancer occurred in Canada in 2011. Approximately one in two Canadians will develop cancer; three in four will survive” (1). If we translate this statistic from whole-number ratios to percentages, this statistic becomes “50% of Canadians will develop 79 cancer; 37.5% of Canadians will develop cancer and survive.” However, in the former, the presentation of statistics as ratios of whole numbers, in combination with the parallelism in this sentence, works to suggest that one has a greater chance of surviving cancer than one has of getting cancer. Here, critical-illness insurance marketing emphasizes the piety that knowing one’s risk guards against surprise and the surprise to guard against is survival and the financial repercussions associated with it.. BMO’s critical illness insurance brochure also uses this piety to sell their product. Under the heading, “Could it really happen to me?” the brochure presents the following statistics: • 196,900 new cancer cases in Canada for 2015 • 42% of Canadian women and 45% of men will develop cancer during their lifetimes • 1 female out of 9 will develop breast cancer, but only 1 out of every 30 will die from it • 1 male out of 8 will develop prostate cancer, but only 1 out of every 27 will die from it • The 5-year survival rate after diagnosis of cancer is 63% (BMO 4) This brochure uses the same strategy as Colorectal Cancer Canada’s “Reduce Your Risk!” video. Just as the video asks, “Are you at risk for colorectal cancer?” while simultaneously informing the viewer that “Many Canadians are at risk for developing colorectal cancer but don’t know it,” this brochure asks “Could it happen to me?” where “it” refers not to the diagnosis of cancer, but the survival of cancer. The statistics in this brochure encourage their audience to imagine being diagnosed with cancer by listing the number of new cancer cases annually and the diagnosis rates for Canadian men and women. The second set of statistics is qualified with the term “but only” to emphasize the comparatively low chance of death resulting from cancer. It is important to note that the cancers in this brochure are all cancers with high survival rates and that there are no statistics about, for example, pancreatic cancer. These rates of survival are rarely presented in Colorectal Cancer Canada’s campaigns, as the purpose is to urge preparedness for the possibility 80 of diagnosis, and fear of death is one way to motivate action. When Colorectal Cancer Canada does present survival rates, they are represented as a reward for vigilant self-surveillance and diligent participation in screening programs. Critical-illness insurance marketing not only relies on the piety that knowing one’s risk guards against surprise, but it also relies on the piety that screening facilitates early detection by uncovering incipient disease. In Colorectal Cancer Canada’s campaigns, the emphasis on diligent participation in screening programs implies faith in (bio)medical technologies. After all, screening involves searching the body with various technologies (from colonoscopies to full-body computed tomography [CT] scans) for the presence of disease. In critical-illness insurance marketing, biomedical technologies are often celebrated for efficacy. For example, RBC’s “Living Benefits” brochure explains, “With continuing medical breakthroughs, you have a better chance of surviving a serious accident or illness than ever before” (RBC “Living Benefits” 7). On the one hand, this brochure attributes increased survival to advances in imaging technologies. On the other hand, the context in which these statements are made—advocating preparedness for survival to escape financial ruin—does not uncomplicatedly celebrate such technologically-mediated survival. Although critical-illness insurance marketing relies upon the piety of Preparedness that screening facilitates early detection by uncovering incipient disease, they simultaneously cultivate anxiety about the potential cost of, and access to, medical technologies such as screening, and in doing so, actively undermine belief in the efficacy of Canada’s health care system. While the Health Canada Act stipulates that all Canadians must have access to medically necessary services free of cost, factors such as wait times can affect access to health care services 81 (Clarke “Difficulty”).67 Critical-illness insurance marketing draws on existing anxieties about survival in the context of so-called “socialized medicine,” such as long wait times for doctors and specialists, and the sustainability of services in the face of an ageing population. For example, BMO’s brochure asks: Are you confident that the health care system will continue to provide the same level of treatment and care that we have come to expect as the population ages and medical advances keep individuals living longer? Critical illness insurance can enable you to obtain treatment outside of Canada or pay for experimental treatment not covered under a health care plan (4). Here, Canada’s health care system, including its medical technologies, is celebrated as constituting a desirable standard of treatment and effectively extending lifespans. However, BMO’s brochure undermines confidence in this system when it implies treatment standards may not continue and suggests that one may inevitably need to venture beyond the Canadian border to secure adequate treatment after these standards decline.68 Manulife’s brochure also alludes to such anxiety, when it states, “During your recovery, you may end up having to pay for healthcare services, special drugs and supplements, and homecare expenses not covered by your government health insurance plan. You might even have to travel, to get the medical attention you need” (1). Here, Manulife questions the effectiveness of Canada’s health care system, suggesting that in the future, medical tourism may become a necessity. These emphasize the 67 In a 2013 Canadian Health Survey, approximately 80% of Canadians aged 15 and older accessed one or more specialized (specialist care, non-emergency surgery, and/or selected diagnostic tests) or first-contact (immediate care or routine care, such as a check-up) health care service; 71% did not report any difficulty accessing services (Clarke “Difficulty”). Of those who reported difficulty accessing care, 16% reported difficulty accessing non-emergency surgery, and 23% reported accessing immediate care (Clarke “Difficulty”). 68 According to a 2017 report by the Fraser Institute, an estimated 63,459 Canadians, or 1.4% of the population, received non-emergency medical treatment outside Canada. Across Canada, otolaryngologists (ear, nose, and throat specialists) reported the highest proportion of patients travelling abroad for treatments (2.1%), while ophthalmologists reported the lowest (0.8%) (Ren and Labrie 1-4). 82 importance of medical technologies and they sell their product by cultivating anxiety about ready access to such technologies. To sell its product, critical-illness insurance marketing relies on the same pieties as Colorectal Cancer Canada’s campaigns, including the piety that knowing about symptoms provides opportunities for diagnosis. If part of the marketing strategy of critical-illness insurance involves cultivating anxiety about the Canadian health care system, another part involves supporting clients as they navigate this system and seek to secure diagnosis, treatment, and recovery. Each of BMO, Manulife, and RBC market services that cultivate anxiety about navigating the Canadian medical system—specifically, a public and governmentally managed system—and offer relief from this anxiety through personalized, and seemingly exclusive, medical care. For example, BMO offers a series of branded services: InterConsultationSM, FindBestDocSM, FindBestCareSM, and Best Doctors 360®. This “network of medical services” (6) offers BMO insurance clients “in-depth analysis of medical records” and the option to “re-test pathology to establish or confirm a diagnosis” and medical summary from a “SM®Best Doctors expert” (6). BMO also promises that “Best Doctors” 69 will “help clients navigate the Canadian health care system by providing them with medical information and resources, one-on-one support, and customized health coaching for a wide range of health related (sic) concerns” (6). While these services supply resources for navigating survival by preparing for the possibility of diagnosis, they simultaneously cultivate anxiety about survival in Canada’s health care system by suggesting that other doctors (doctors not a part of the “Best Doctors” network) are average, 69 By using the registered service mark, “Best Doctors,” BMO can present their advice as if it comes from BMO’s “best doctors.” When a verbal (rather than written) description of the services is provided, as is often the case in on-phone or in-person insurance consultations, potential clients are promised that they will have exclusive access to BMO’s best doctors in providing personalized health care. 83 or even bad, doctors. In other words, BMO cultivates anxiety and then provides tools for its alleviation. Manulife and RBC each offers services similar to BMO’s “Best Doctors” network. Manulife financial provides clients with “Health Service Navigator” which offers resources on “how to navigate the Canadian health care system” (1). Like BMO, Manulife relies on the piety that knowing about symptoms provides opportunities for diagnosis and implies that access to information and resources is their audience’s primary concern. And like BMO, Manulife represents the Canadian health care system as difficult to navigate and as requiring exclusive, personalized assistance. Similarly, RBC offers a program with they call “Medical ConfidenceTM” which promises that clients “receive faster access to care and treatment by appropriate physician specialists, a more accurate diagnosis, one-on-one support from an RN and more” (RBC). Here, RBC emphasizes the importance of the piety that knowing about symptoms provides opportunities for diagnosis and suggests to their audience that it would be difficult to perform this piety without their services. Although these alternative medical services cultivate anxiety about survival by undermining confidence in the efficacy and navigability of the Canadian health care system, this is not to say that they question medical technologies or expertise. Each of these insurance providers relies on the idea of medical expertise to sell their products. Their naming schemes—such as “Best Doctors” and “Medical Services”—and their offered services emphasize the importance of medical experts and medical technology. In other words, these programs celebrate medical expertise while simultaneously cultivating an atmosphere of scarcity, suggesting a deficit of expertise and access to services in the Canadian healthcare system. In their critical-illness insurance marketing, BMO, RBC, and Manulife Financial each relies upon the pieties of Preparedness. However, whereas Colorectal Cancer Canada’s campaigns urge preparedness for diagnosis to avoid death, these companies urge preparedness 84 for survival and its financial ramifications in the context of socialized medicine. In doing so, critical-illness insurance marketing draws attention to aspects of health that are not often highlighted in public or popular campaigns. Specifically, if one undertakes an “affirmative” reading70 of critical-illness insurance marketing, BMO, RBC, and Manulife Financial can be understood as making visible some aspects of health that are not always represented in popular discourse and marketing about cancer. In Chapter 1, I mentioned Haraway’s provocation to “stick with the trouble,” and integrate death into our discussions of life (see Staying with the Trouble) as one way to possibly resist the coercive rhetoric of optimization. An affirmative reading of critical-illness insurance marketing might suggest that in their marketing, BMO, RBC, and Manulife “stick with the trouble” in three ways: by challenging popular survivor discourses, making visible the economic determinants of health, and drawing attention to a growing population of ageing Canadians. In its representation of cancer survival and its financial repercussions as anxiety-ridden, critical-illness insurance marketing challenges dominant survivor discourse which describes survivors as courageous, brave, and all the stronger for having overcome cancer. This dominant discourse has been shaped, in part, by the cultural dominance of breast cancer in North America. As Kirsten Bell explains, the concept of survivorship has become, for some, “breast-cancer-ized” insofar as the figure of the heroic breast cancer survivor shapes the way that cancer survivors, and not just breast cancer survivors, are invited to understand themselves (62). The figure of the 70 Here, I refer to what feminist theorist Elizabeth Grosz calls an “affirmative method,” in which she reads texts with a mode of assenting, rather than dissenting (Time Travels 3). Rather than undertaking a critique, she states: “I have instead tried to seize and develop what is of use in a text or position, even in acknowledging its potentially problematic claims or assumptions” (Time Travels 3). While Grosz applies this affirmative method to the texts of Darwin, Bergson, and other scholars, I extend this charitable framework to the “texts” of this section: critical-illness insurance marketing. And although I resume my critique of critical insurance marketing after the following paragraph, an affirmative reading of these texts provides some insights. 85 breast cancer survivor71 both shapes and reflects narrative norms.72 One dominant narrative of cancer survivorship is what Arthur Frank calls the “restitution narrative”: in this pathography, one falls ill, recovers, and returns to health and normalcy, while the illness remains but a “blip in the normal passage of time” (90). Christina Sinding and Ross Gray describe three different post-cancer narratives that appear in popular discourse: a return to normalcy, where the ill person makes a full return to the realm of health; a transformation for the better, 73 where the experience of having cancer makes one more loving, more engaged, or just plain better (148); and “spunky survivorship,” which is linked to discourses of successful ageing and images of activity, autonomy and wellbeing in older age (148). Although these are different narratives of survivorship—in some cases survivors gracefully return to health, in others they exceed their pre-cancer health—they all emphasize strength, accomplishment, and achievement.74 However, as Jain points out, the very existence of the term “survivor” necessarily implies “dier” (54). Often, the relationship between survivor and dier—those who lost the battle,75 those who don’t return to health—implies that there is a failing on the parts of those people who didn’t fight hard enough. In contrast to popular representations of cancer-survivor-as-hero, critical-illness insurance marketing represents survival as anxiety-ridden. When critical-illness insurance marketing provides an interpretation of survivorship that includes anxiety, it also carves out a space for an affective response to survivorship that does not 71 I refer here to representations of the breast cancer survivor in what Segal calls “the most public and most available cancer narratives” (“Cancer” 295) the stories told in newspapers, magazines, popular pathographies, made-for-TV movies, and other examples of the popular press. 72 For more on how personal narratives participate in the regulation of public cancer discourse see Segal, “Breast Cancer Narratives as Public Rhetoric.” 73 This narrative exemplifies what Ehrenreich calls “our implacably optimistic breast-cancer culture,” which represents survivors not only as spiritually upwardly-mobile, but also able to “come out, on the survivor side, actually prettier, sexier, more femme” (49). 74 Critical responses to popular survival discourse emphasize that the available narratives and representations often fail to adequately capture post-cancer experiences. As Segal eloquently states, “cancer is not the best thing that has ever happened to me” (“Cancer”). 75 Survivor discourse also reinforces the war metaphor that often accompanies cancer discourse, where oncologists and patients alike fight, win, or lose battles. 86 require optimism, heroism, or security, and instead allows for uncertainty, anxiety, and precarity. Moreover, when critical-illness insurance marketing represents the root of these anxieties in financial terms, it makes visible the economic determinants of health. Specifically, they draw attention to the impact that money has on one’s experience of disease and recovery. And although this insurance marketing works to undermine confidence in Canada’s public healthcare system, suggesting that private, pay-for-access care is the solution, in doing so it draws attention to the increase in a population that may require more care—in 2016, Canadian seniors outnumbered Canadian children for the first time since Confederation (Grenier)—and the need for sustainable, supportive social infrastructure as this population continues to grow. Despite this affirmative reading, it is important to remember that these moves are made for the purpose of cultivating anxiety about surviving cancer in a context of scarcity. The solution to this anxiety is presented as purchasing critical-illness insurance. These marketing campaigns draw on rhetorical pieties of Preparedness established in cancer awareness campaigns to sell a product that promises personal protection in an atmosphere of anxiety and scarcity. I have juxtaposed three different kinds of marketing in this chapter: a conventional cancer awareness video, “Reduce Your Risk for Colorectal Cancer!” that encourages preparedness by informing viewers about their risk for cancer and cancer-related death, emphasizing the importance of participating in screening programs, providing their audience with warning signs of cancer; a cancer awareness campaign for a thanatophobic public, “Endangered Butts,” which provides the same set of pieties but in a way that camouflages ideas of death and disease amongst euphemism, puns, and humour; and a set of critical-illness insurance marketing materials, which I suggest relies on the same set of pieties, but deploys them in a way that promotes preparedness for cancer survival and its financial ramifications. In the next chapter, I 87 explore the health awareness orientation Revelation that appears in a Canadian Lyme disease campaign and in a direct-to-consumer genetic testing service, 23andMe. 88 CHAPTER 3: REVELATION In an excerpt taken from the “Stories” page of the Canadian Lyme Disease Foundation (CanLyme), Lisa describes the experience of trying to convince her doctor that she has Lyme disease. Although she has been unable to obtain a diagnosis from her health care provider, Lisa knows that she has Lyme. About her visit to her doctor, she writes: “Most scary for me was when he said, ‘I have many patients who are sick, and we don’t know why. That’s just the way it is.’ I wanted to strangle him and say, ‘Maybe those patients have Lyme Disease!!!’ (CanLyme “Lucky”). Lisa proselytizes: Lyme disease explains her situation, so it must explain others’! I begin with this excerpt because it highlights what this chapter calls the health awareness orientation of Revelation. While the health awareness orientations discussed in previous chapters rely on future temporalities, impelling their audiences to anticipate future bodily states or diagnoses and act in the present to secure desirable futures, the pieties of Revelation are premised on a realization that a determinative encounter has occurred in the past. In this chapter, I discuss two seemingly unrelated organizations—CanLyme, and 23andMe, a direct-to-consumer (DTC) genetic testing service—through their shared reliance on what I will call Revelation. To apprehend the term “health awareness,” in this chapter, I again employ Burke’s related concepts of “orientation,” “altar,” and “pieties.” In addition to furthering this dissertation’s larger goal of nuancing understandings of health awareness, this chapter highlights Lyme disease and DTC genetic testing as rich sites of analysis for RHM, and Critical Health Studies more broadly. In exploring the health awareness orientation of Revelation, its pieties and altar of health, this chapter investigates the discursive practices of the CanLyme and 23andMe websites.76 Both sites provide information to assist their users in the pursuit of health, under 76 The term “websites” includes the webpages themselves and also the downloadable documents available on these sites. 89 conditions where one’s current health state is assumed to have already been determined by some past encounter. I have identified three pieties of Revelation as evidenced at these sites. First, where the websites provide instructions and strategies for making sense of ticks and DNA, they rely on the piety that a para-human actor may determine a current health state. While my use of the term “actor” here invokes Actor Network Theory (ANT), I use the prefix “para-” (in its meaning of “analogous or parallel to, but separate from or going beyond, what is denoted by the root word” [“para-” 1]) to nuance the designation of “non-human” that often accompanies the term “actor” in the context of ANT. As I show, “non-human” does not quite capture the complexities of the relationships between human and tick and between human and DNA. Both CanLyme and 23andMe position para-human actors (the tick and DNA, respectively) as real, factual, and affectual determinants of health. Despite being two very different actors, the tick and DNA are similar insofar as they function as repositories of information, and insofar as testing these entities promises to reveal (previously unverified) facts about health. Second, where they discuss testing procedures, CanLyme and 23andMe rely on the piety that received-facts about the encounter with this para-human actor provide certification of the health state. Third, where they outline the role of doctors in the diagnostic and treatment process, they rely on the piety that each instance of revelation requires a new cycle of proselytizing and persuading. All three pieties both rely on and reinforce an altar of health that is characterized not by the absence of disease, but by the acknowledgement of a health state already in play. In this chapter, the term “Revelation” has two meanings. The first is epistemological, and has an immediate temporality: in the moment of revelation, something not previously seen or understood is newly perceived. The second is more affective, and has a durational temporality: the new object of perception becomes an enduring source of knowledge, understanding, and insight. So on the one hand, both CanLyme and 23andMe promise moments of discovery about 90 the self, revealing the previously unrealized significance of past encounters—with a tick or ancestral DNA—for the future health of their audiences. On the other hand, this moment of discovery extends into a revelation in the second sense, one that has duration and demands to be shared and put into new social and rhetorical relations. It is important to acknowledge that, while this chapter takes up these two cases as sharing a health awareness orientation, they have very real differences. The tick and DNA share a temporal relationship as antecedents to a current health state. This temporal dimension to Revelation assumes that a past encounter or event determines present and future health-states. Although exactly when the encounter has occurred varies between the tick77 and DNA—a Lyme-producing encounter happens in one’s lifetime, while an encounter that produces a genetic mutation does not—in both cases the encounter is antecedent to one’s current health state, and in both cases the awareness generated suggests that certain actions may be apposite to secure a particular future. CanLyme and 23andMe differ in terms of the sizes and scopes of their organizations, and they deal with different conditions; as such, it may not immediately be clear how a comparison of these two sites is appropriate. CanLyme is a volunteer-run, registered non-profit charitable organization in Canada, “formed to provide the public, including medical professionals, with balanced and validated information on Lyme disease and related coinfections” (CanLyme “About”). CanLyme’s board of directors comprises activists and scientists from across the country, and, as their website explains, “some are Lyme survivors, some are scientists, and some are friends or family members of Lyme victims – but all are committed to preventing the spread of Lyme disease” (“CanLyme Board,” emphasis in original). Although there are international 77 Lyme disease is caused by the transmission of borrelia bacteria into the human body. The primary agent of this transmission is the tick (although not all ticks carry Lyme disease, nor does every encounter with a tick result in Lyme disease). The bacteria are also transmitted through blood transfusions, pregnancy, fluid exchange during sexual intercourse, or other exposure to borrelia-infected matter. 91 Lyme disease organizations, such as Global Lyme Alliance, I focus on CanLyme because it remains Canada’s most prominent organization for Lyme disease awareness. 23andMe is a privately held personal genomics company providing, among other things, a direct-to-consumer genetic testing service. 23andMe was founded in 2006 by Linda Avey, Paul Cusenza, and Anne Wojcicki, and in 2007 it became the first company to offer autosomal (a chromosome that is not a sex chromosome) DNA testing for ancestry (Goetz). As of July 2018, the company had a net worth of $1.75 billion, including a then-recent $300M investment from pharmaceutical giant GlaxoSmithKline, and had sold products to at least 5 million customers (Herper). The company is transnational, offering its services in 54 different countries.78 23andMe became available in Canada in 2014, less than a year after the US Food and Drug Administration banned the sales of 23andMe in the US due to a failure to provide information about the test’s detection methods and the error rates (BBC).79 Two 23andMe products are available in Canada: an ancestry test, and a combination ancestry and health-related test. In this chapter, I am specifically concerned with the health-related test. I analyze myriad materials obtainable from the 23andMe Canada website, including explanations of how their science works, a glossary of terms, and sample reports. As the most studied DTC genetic testing company (see Prainsack 78 Under “Ordering and Shipping,” 23andMe’s website lists the countries and territories that they currently ship to, along with the disclaimer, “[i]f your country is not listed, 23andMe cannot recommend our service to you or endorse alternative ways for you to receive our service.” This suggests that there are alternative methods of obtaining their products. As an example, a quick search on eBay, an online auction site, lists 126 test kits for sale (ebay.ca). Many of these eBay sellers offer to ship to countries not serviced directly by 23andMe, including Japan, United Arab Emirates, Kuwait, Trinidad and Tobago, Qatar, and Vietnam (Larry807). 79 23andMe has been able to sell their product in Canada because Health Canada “regulates only the safety of the collection kit, not how information from genetic tests is used” (Picard “Controversial”). 23andMe received FDA approval to once again sell their product in the US in October 2015, after updating their website to make genetic information easier to understand (Pollack “23andMe”). The difference between the regulation of 23andMe in Canada and the US highlights the relationship between the test and information: the FDA banned the product because there was no way to prove the efficacy of the test, and the administration was concerned that users may take action based on information received from the test. For the FDA, the test and the information provided by that test are seen as concomitant. Health Canada offers a different understanding of the test, one that focuses on the materiality and associated safety of the testing mechanism itself. The information provided by this test is not considered part of this test. 92 “Understanding”), 23andMe provides an excellent case study for the rhetoric of health awareness in DTC genetic-test marketing. Despite their differences, CanLyme and 23andMe are similar insofar as each represents itself as a purveyor of information. CanLyme was formed “to provide the public, including medical professionals, with balanced and validated information on Lyme disease and related coinfections” (CanLyme “About”). 23andMe has been able to globally distribute its genetic test by presenting it as an information product rather than a medical product or diagnostic test (see Ruckenstein, Van Dijk and Poell). As I explain in Chapter 1, it is precisely because sites are different in size, scope, and financial goals that I have selected them for comparison. Their having so little else in common allows me to foreground the way the orientation of Revelation appears in these organizations’ websites. To date, CanLyme has been the subject of relatively little research. A recent article mentions CanLyme as one of the groups that participate in citizen-science efforts in Canada (volunteers walk through long grasses, deliberately trying to catch ticks [Lewis et al.]), but no sustained analysis of the organization has been undertaken. Lyme disease awareness in Canada is similarly under-researched. One study, Aenishaenslin et al. measured levels of awareness of Lyme disease in Canada before and after a brief 2014 Health Canada campaign by using data from two surveys conducted in March and December 2014. In describing their methodology, Aenishaenslin et al. characterize Lyme disease (referred to as LD) awareness as having heard of Lyme disease; as knowing about the symptoms, treatment, transmission routes, and risk periods; and as knowing about preventative behaviours, such as checking for ticks, using insect repellent, and wearing long pants (1068). This description of Lyme disease awareness assumes that awareness means acquiring or having knowledge. This emphasis on knowledge, rather than action or behaviour, exemplifies Scott’s “knowledge enthymeme.” Relying on the unstated 93 premise that knowledge is power, the knowledge enthymeme assumes that a health crisis becomes the exigence for a health intervention, and enables specific actions that lead to beneficial effects (Scott 58). While Aenishaenslin et al.’s article details the parameters of Lyme disease awareness, their description of awareness relies on an unstated assumption that knowledge is power, and does not engage critically with the concept of awareness or the promotion of knowledge about Lyme disease. Jacob Bull has argued that much academic work on Lyme disease and other tick-borne infections foregrounds disease, and in turn, hides ticks and reduces them to vectors of disease (73). He names them “invisible animals” owing to their absence from social and academic inquiry (73), and not, as one may assume, because they are difficult to see. Bull uses the tick to engage with critical animal studies and its relationship to the realm of human concern. Building on Bull, I show that the tick also plays the role of a rhetorical actor: it persuades through its presence, it is the site of testing, and it is a source of knowledge. In comparison to scholarship on CanLyme, scholarship about 23andMe is plentiful.80 Much of this work has focused on the implications of 23andMe for participatory research (see Saukko “Digital”; McGowan et al.; Prainsack “The Powers”), data collection and commodification (see Van Dyck and Poell; Merz) and the neoliberalization of health (see Nordgren and Jeungst; Tutton and Prainsack). Tutton and Prainsack have argued that 23andMe constructs an enterprising and altruistic self that purchases genetic testing to know themselves better and participates in a community of research for the greater good. This newly formed self is, they argue, a neoliberal subject, constructed as an empowered citizen who is able to make informed and rational and moral choices (1083-84). As Nordgren and Jeungst point out, there is 80 This difference in the amounts of scholarship generated by these topics is itself unsurprising. While not everyone has come into contact with a tick, everyone has DNA. 94 a moral component to the genetic health test: purchasing a test is framed as part of a responsibility to understand one’s health risks (159). These are all important points. However, as I have discussed in the Introduction and Chapter 1, instead of concluding that health awareness participates in the neoliberalization of health, I assume this as a starting point. Although neoliberalization of health is indeed a large component of these health communications, a focus on neoliberalism risks eclipsing other lines of inquiry. For example, this chapter explores how non-human (or para-human) actors can provide certification for subjective experiences of the body. Relatively little of the 23andMe scholarship has been written from the perspective of rhetorical criticism. Rhetorical critics are aptly positioned to make a valuable contribution to the role that DTC genetic testing may play in persuading patients (and pre-patients) to understand themselves as healthy (or not) or sick (or not). One excellent example of rhetorical criticism is Maria Levina’s work on the discursive ties between DTC personal genomics companies and the rise of “network subjectivity,” or the understanding of oneself as embedded in social media networks (1). As Levina shows through her careful analysis of 23andMe services and user-generated content, personal genomics capitalizes on social-networking culture by emphasizing the continuous sharing81 of oneself with others (1). For example, 23andMe encourages their clients to share their genetic reports with each other, and in turn with 23andMe, rendering their private information accessible, mineable, and marketable. Levina’s study provides insight into the relationship among social-networking, citizenship, and power, suggesting that the duty of “citizen bioscience” is to increase the capacity of the network by performing free labour (5). As Levina points out, 23andMe capitalizes on this 81 Levina does not define “sharing”; however, in the context of social networking, this term refers to the production of content for social-networking sites including posts, videos, pictures, links, data, and other information. 95 concept of networked good, combining a rhetoric of democratization of the genome with a rhetoric of equality: “The rhetoric of equality present in narratives about ‘democratization’ of the genome assumes that access to information, on an individual level, leads to social or public equality” (6). Part of the performance of citizenship involves sharing one’s genetic information, “precisely because it is good for the network” (Levina 5). Although Levina is interested in a technologically constituted network, her description of 23andMe as capitalizing on a sense of greater good—sharing data for the good of the network—is one that resonates with the argument of this chapter. As I show, 23andMe capitalizes on a sense of greater good by posting success stories, where clients urge others to purchase 23andMe, take the test, find answers, and change their lives. While they are clearly a marketing tool, these stories are represented as performing a public good. Zoltan P. Majdik’s work is another fine example of the contribution that rhetorical critics can make to the discussion of genetic testing. Majdik uses rhetorical stasis theory to explore relationships between legislators and the DTC genetic market providers (574). He argues that interactions between a DTC genetic testing company and its consumers disrupt the divide between experts and non-experts, as such testing allows laypeople “to render judgment about what meaning they want to assign to their complex genetic information, and about what action they want to take in response to it” (576). Building on this work, John Lynch argues that displacing experts from such discussions results in situations where DTC genetic testing companies shape understandings about genetics to their own benefit (369). Such work on genetic testing has been informed by the work of rhetorical critics on representations of the gene itself. Celeste Condit has traced understandings of disease causation from germ theory to gene theory, arguing that the corresponding shift in metaphors has changed the way we understand and treat bodies. Germs invade healthy bodies from without, while genes 96 attack the body from within (see Condit Meaning). More recently, Condit calls on rhetoricians to help navigate the rise of new genomic technologies, such as CRISPR, which allows the “insertion of genetic changes in living humans and embryos with enough precision to encourage the reconstitution of medical genetics as the remaking of the existing range and species trajectories of biological bodies” (“Rhetoricians” 20). We must, she argues, navigate between what she calls “two black holes”: one being the overinvestment in genomics research; the other being the “untenable and harmful” claim that there is no biological or biochemical influence from our ancestry (Condit “Rhetoricians” 21). As Leah Ceccarelli points out, public discourse about CRISPR metaphorically envisions it as an agent with the power to alter humans, rather than an agency that we decide to use or not (“CRISPR” 1). For Condit and Ceccarelli, rhetoric provides one set of tools for thinking about how language about genes is a form of social action. Language shapes the very way we think and act in relation to genomic science and projects such as CRISPR. Many scholars, rhetoricians and non-rhetoricians alike, have taken up how the marketing of genetic testing relies on language – specifically, metaphors for genes. Paula Saukko argues that 23andMe has departed from the dominant metaphor of genes as information: I noticed that genes were often referred to as data, raw data and being abundant [sic]; often genes were cast as data by the use of verbs, so genes were browsed, googled, uploaded, retrieved, collected and crowdsourced. Thus, genes were not represented as information or a code to be deciphered or cracked by scientists but cast as abundant natural or raw digital resource [sic] that could be searched, analyzed and pooled for different purposes by scientists, lay customers and companies. (“Shifting Metaphors” 298)82 82 In this passage, Saukko distinguishes between “data” and “information.” This may be better captured, as she discusses later in her article, as a distinction between “information transmission” and “big data” metaphors (298). Information transmission metaphors present genes as containing information to be deciphered, while big data metaphors present genes as raw material from which analyses or interpretations can be made. 97 In the 23andMe texts that Saukko comments on, genes are discussed in terms of data to be analyzed and used, departing from a traditional metaphor of genes as a master code (Gronnvoll and Landau; Nelkin), blueprint (Nerlich and Hellsten; Roof), recipe (Ceccarelli “Neither”), or language (Hedgecoe). Saukko effectively argues that this change in metaphor works to validate 23andMe’s practice of obtaining genetic information from consumers and selling that data (“Shifting Metaphors”). If genes are data—materials to be analyzed and used to solve problems—then sharing data becomes represented as a public good rather than a breach of privacy. However, even though Saukko makes the case that 23andMe does not rely on the metaphor of genes as information, the DTC genetic test itself is still marketed as information. Saukko herself reinforces this idea elsewhere, arguing that 23andMe’s interactive platform directs consumers to seek associations among health, DNA, and information (“Digital”). This is Scott’s knowledge enthymeme at work: genetic information is power. In other words, the underlying assumption here is that accessing this information is desirable. This is, in part, the logic of the health awareness orientation of Revelation. Para-Human Actors The first piety of Revelation is that a para-human actor may determine a current health state. For Bruno Latour, “[A]n actant [or actor] can literally be anything provided it is granted to be the source of an action” (“On Actor-Network Theory,” 376). Rather than focus on human agents, Actor Network Theory (ANT) attends to a variety of actors in a given situation, in which any tool, object, item, body, or other thing is recognized as having the capacity to be the source of action. ANT privileges relationality over individuality – that is, it provides a framework for analyzing things in relation to one another rather than in isolation. ANT challenges conventional dualisms of subject/object, culture/nature, and society/technology (Williams-Jones and Graham 272). However, ANT maintains a dualism of 98 human/non-human. ANT gained traction in the 1980s and 1990s and, at that time, challenged a largely untroubled anthropocentric tendency in epistemological research (Williams-Jones and Graham 272). While this human/non-human dualism was a necessary distinction for recognizing the agency of entities other than humans, I suggest that such a dualism does not account for the blurred boundaries between humans and ticks and between humans and DNA in the cases I explore. As antecedents to states of human health, both ticks and DNA are in complex relations to the human: they are not simply “non-human actors.” This is not to say that the tick and DNA are the same thing, nor to say that they occupy a similar relationship to humans. They do, however, share a temporal relationship: they are antecedents to human health states. In other words, some thing, blurring the boundaries between human and non-human, has in the past has determined one’s health state in the present. In the instance of the tick, a designation of non-human may, at first, seem appropriate. We can see the human/non-human binary explicitly invoked by CanLyme in their description of how to identify ticks: “In Canada, we have approximately 40 species of tick, but fortunately for us humans, only a few of them can transmit Lyme disease” (“Tick ID”). In this description, ticks are portrayed in opposition to “us humans,” clearly establishing a line between genera. However, CanLyme undermines this binary elsewhere on its website. According to CanLyme, “One good thing is that, unlike mosquitoes (which can attach and begin feeding within seconds of landing on you) ticks take much more time to crawl to a suitable spot on your body, bite into your skin, secrete a ‘cement’ that secures them in place, and begin feeding/salivation” (“Tick Removal”). In this description, ticks permeate the boundaries of inside and outside, attaching to the body and exchanging fluids. Annemarie Mol and John Law explain that our current understandings of the body rely on an objective-subjective dualism based on knowing the body from the outside and the inside. 99 When we observe the body from the outside, it becomes the object of knowledge; when the body is known from the inside, it is a subject of knowledge (43-44). However, Mol and Law suggest that the active body—defined by what it does rather than by what it is—has semi-permeable boundaries: “These active bodies are not isolated. Instead, their boundaries are leaky. They interact and sometimes partially merge with their surroundings” (53). While CanLyme tends to position humans and ticks as oppositional forces, there are many instances in CanLyme literature where both the human body and the tick can be understood as active bodies, that is, bodies with semi-permeable boundaries that merge with their surroundings, or in this case, each other. The semi-permeable boundary between human and tick becomes apparent in the site’s anxieties about ticks evading detection. For example, from their description of transmission, CanLyme explains, “When the tick starts to feed, the bacteria migrate from the midgut to the salivary glands, where they can be injected into the new host’s bloodstream. Hence, the longer a tick feeds on you without detection, the higher your risk of contracting Lyme disease” (“Transmission”). The language of this passage grants agency to the tick: the tick feeds on the human “host” without detection, exchanging fluids and blurring bodily boundaries. Moreover, statements such as “Feeding ticks secrete a local anaesthetic from their salivary glands, so that a host is less likely to notice that it has been bitten” (“Transmission”), portray humans as passive hosts for the active tick. These active ticks evade detection. Elsewhere on this page, CanLyme outlines the challenges of identifying nymph ticks (the second stage of a tick’s three-stage life, the other two being larvae and adult ticks) on one’s body. The page reads, “Nymphal ticks are very small (about the size of a poppy seed), so we are less likely to notice one feeding on us until they’ve grown to a larger size, by which time they are more likely to have transmitted the decease [sic]” (“Transmission”). 100 Fig.1. Image of a child’s face with two ticks from CanLyme, “Basics” CanLyme.com, https://canlyme.com/lyme-basics/ This anxiety about the inability to detect ticks is perhaps most prevalent in the site’s repeated use of a particular image (see fig. 1) along with the prompt “Find the two ticks attached to this child’s face” (CanLyme “Basics,” “Tick Removal”). This image is used twice on the website. It first appears on CanLyme’s “About” page, flanked by the following text: “In the photo to the right, the two dark freckles, one on the cheek and one on the neck, are actually ticks attached to this child’s face.” Here, on the page that introduces the most basic information about Lyme disease, CanLyme begins by describing what Lyme is and how ticks can transmit the bacteria. The next paragraph aims to cultivate a sense of doubt about the ability to detect a tick—specifically, two ticks on a child. As I have discussed in a previous chapter, children play a powerful role in the public imagination (see Edelman; Jain; and Pezzullo). The image of a child evokes a sense of innocence and vulnerability. The image of a tick-spotted child also appears on the “Tick Removal” section of the CanLyme website. Here, the image is accompanied by text emphasizing the importance of 101 avoiding tick attachment, and instructions for cautionary behaviour. Here is a section from the website: Keep switching positions of who is in back if walking single file. Look frequently for signs of ticks on you or your friend. If you find an attached tick, safely remove the tick as completely and as quickly as possible without squeezing the body of the tick which can inoculate you with whatever disease may be in the gut of the tick. It is hard to see ticks that are attached. Look at the photo to the right, spot the ticks attached to this child’s face. One is the dark freckle on the cheek and the other freckle on the neck. (CanLyme “Tick Removal”) The inability to detect a tick is the source of anxiety. In both this passage and the one above, the viewer is chastised: what you thought was a freckle is actually a tick! The inability to notice that a tick is on one’s body—that a tick has become part of your body—is presented as a threat to safety. The tick itself is part of the basic information about Lyme disease. On the CanLyme website, Lyme disease is the primary object of awareness. Nevertheless, it becomes difficult, even impossible at times, for the CanLyme website to discuss Lyme disease without reference to the tick. The first thing that one reads on visiting the “Lyme Basics” page is “NO TICK IS A GOOD TICK.” It is only after this declaration that the basic description of Lyme disease is provided: “Lyme disease (often misspelled as ‘Lime’ or ‘Lymes’) is an inflammatory infection that spreads to humans through tick bites” (CanLyme “Lyme Basics”). In a section of the website designed to explain what Lyme disease is and what can be found on the site, the tick is represented as the central actor, overshadowing the other elements on the page.83 CanLyme 83 Although CanLyme presents the tick, and all ticks, as “no good,” not all ticks carry and transmit Lyme disease. Elsewhere on their website, “Tick ID” CanLyme writes, “In Canada, we have approximately 40 species of tick, but fortunately for us humans, only a few of them can transmit Lyme disease.” 102 foregrounds a metonymic understanding of Lyme disease as transmitted through ticks, where the tick comes to stand in for Lyme itself. I present these passages to show that although CanLyme establishes a human/non-human binary in some places on their website, they also emphasize the tick as an actor that necessarily blurs boundaries between inside and outside and between human and tick in the transmission of borrelia bacteria. This is the first piety of Revelation, that a para-human actor may determine a health state. The human/non-human binary does not capture the complexity of this relationship. The tick—in its ability to merge with the human body by cementing itself onto the skin, exchanging fluids, and evading detection—surely challenges the boundaries between inside and outside, not only at the time of transmission, but also in the anxious temporality of anticipation (see Adams et al.) that a tick may always be about to enter, or may have already entered, and determine the health trajectory of a human body. While, as a para-human actor, DNA is very different from the tick, they share key similarities. Both are represented as causing health states in humans that are only later realized. A distinction between human and non-human actors would fail to account for the ontological complexity that occurs when DNA determines health states. 23andMe represents DNA as analogous or parallel to the human, but also as travelling from the human body into the laboratory – or, from individual into shared social relations. DNA also follows a temporal trajectory, from the present, into the distant past, and into the future. Beyond 23andMe, scholarly and popular discourse represents DNA as being within the body. As mentioned above, Condit explains that one of the dominant metaphors of a gene theory of disease is that the disease comes from within. Segal elaborates on Condit’s point: “Under the influence of a germ theory of disease, in which healthy bodies are infected by invading microbes, we are better or worse fortresses, attacked from without. Under the influence of a gene theory, in 103 which disease arises from features of our genetic make-up, we are better or worse organisms, attacked from within, in a kind of horrible betrayal” (Health 128-29). Our genes, and therefore our DNA, are inside the body. This sense of betrayal depends upon an identification between, or conflation of, DNA and the self. DNA is understood not only as being within the body; a kind of essentialism equates DNA with the authentic self, even as it migrates out of the body into the crime scene, the collection kit, or the lab. One of the most prevalent representations of the conflation of DNA and personhood is in television and movies that detail forensic science. For example, in an analysis of the popular show Crime Scene Investigation (CSI), which depicts forensic scientists, Barbara Ley et al. found that over the show’s 10-year run, 29% of all cases solved relied upon DNA matches (achieved by testing and comparing two DNA samples gathered from different sites) (60). On the show, DNA is likened to a fingerprint and used to verify the true identity of the killer, in many cases overriding all other forms of evidence. In this article, Ley et al. also explore how the show reinforces the relationship between genes and personhood. They write: In “Table Stakes,” a CSI commented on a DNA match by observing, “You can change your name. You can’t change your blueprint.” In “35K O.B.O.,” the lab’s male technician personified—and arguably sexualized—the DNA from a hair sample that he took from his date the night before: “What I need to know is on the inside,” he explained to a co-worker, “and let me tell you—this girl has got some fine epithelials.” (Ley et al. 61) Here, DNA becomes a stand-in for the person, a cipher for the authentic self, even as it migrates away from the body. The show reinforces assumptions about the centrality of DNA to personhood and, as Ley et al. argue, “[T]he show’s dominant messages about genetics could reinforce the effects of such discourses” (63). 104 This conflation of DNA and personhood is reinforced on 23andMe’s website. However, 23andMe presents DNA as conceptually distant from, and on an entirely different scale than, the human body. This difference is evident in a statement taken from 23andMe’s homepage: “You are made of cells. And the cells in your body have 23 pairs of chromosomes. Your chromosomes are made of DNA, which can tell you a lot about you.” DNA is undoubtedly human material here: it is described as making up chromosomes, which are found in cells, and people are made of cells. It is nested inside the cells, inside the chromosomes. It is both of the human, linked in essence, but conceptually distinct. Notably, 23andMe does not say that DNA makes up who you are, but rather, they represent DNA as something that “can tell you a lot about you” (“23andME”) and as “the complete set of instructions for making you” (“Genetics 101”). DNA exists inside the human, but, importantly for 23andMe, DNA can also be removed from the body and maintain its DNA-ness. As 23andMe emphasizes, inside or outside, it is still “your” DNA: “Our CLIA-certified lab extracts DNA from cells in your saliva sample. Then the lab processes the DNA on a genotyping chip that reads hundreds of thousands of variants in your genome” (“Genetic Science”). 23andMe’s marketing depends on understanding DNA as material that can transcend the boundaries of interiority and exteriority and retain its status as an information-providing agent. 23andMe also represents DNA as temporally complex, belonging to an individual in the present and yet simultaneously preceding that individual. For example, 23andMe explains that “Your DNA was passed down from your parents—and their parents and so on” (“Genetic Science”). Here, DNA is described as “yours,” that is, belonging to an individual person, but also preceding them. DNA is represented as simultaneously individual and collective. Part of this representation is based on a narrative of genetic ancestry testing. As Hallam Stevens points out, the starting assumption in genetic testing is that at some point in the very distant past, the 105 ancestors of all living humans shared an identical set of genetic markers (394). When an individual, also living a very long time ago, experienced a mutation in her genetic markings (for example, TAGGCTA becomes TGGGCTA: an A is mutated to a G [Stevens 394]), then this mutation would pass down to all her descendants. Again, a person’s DNA is represented both as belonging solely to them and as predating them. CanLyme and 23andMe each work to persuade their users that a para-human actor may determine a current health state. They persuade by presenting this notion in terms of pieties: it is necessary to understand the power that these para-human actors have, and it is desirable to know more about how these actors affect one’s current state of being. These actors play a key role in the websites of CanLyme and 23andMe, and understanding what the tick and DNA are and how they work are central aspects of the health awareness orientation of Revelation. Certification In the previous section I established that both CanLyme and 23andMe reinforce the piety that a para-human actor may determine a current health state. This section will show that CanLyme and 23andMe also represent these para-human actors as repositories of information and that received-facts about the encounter with this para-human actor provide certification of the health state. Here, the term “certification” refers to a piece of evidence around which all other evidence and stories can be fitted.84 Although certification may be used to secure a diagnosis from a healthcare provider, certification is distinct from diagnosis. This concept of certification is important given the relationship among health states, tests, and documentation. Stevens argues that DNA itself becomes evidence in the certification and 84 This concept of certification occurs briefly in Stevens’ work on 23andMe Ancestry tests. Stevens is specifically concerned with how genetic testing constructs the past: he argues that DNA histories construct a link between individual and human migration and provide powerful narratives for identity based on genetic evidence (391). Stevens uses the term “certified” once, in passing: “such stories have the potential to profoundly alter what kinds of accounts of the past are considered ‘authentic.’ We are increasingly looking to DNA to provide certified versions of memory, history, and identity” (400). 106 legitimization of an identity: “DNA is taken to be definitive—it provides a solid backbone around which other stories and other evidence must be fitted” (400). However, I suggest that, for 23andMe, it is not DNA itself that provides this backbone, but rather, the documentation, or test report, that is produced through the testing of DNA. The test report85 certifies a health state, and as I will show, a future health state. In other words, the test report provides a backbone around which other stories or evidence can be fitted. Test reports are, in the words of Dumit, “received-facts” (“Is it me” 39): “I emphasize ‘received-facts’ rather than just ‘facts’ to highlight the activity of translation that has taken place in order for the results of a scientific or medical project to reach us” (“Is it me” 39). While Dumit introduces this term in discussing the way that brain images change how we understand our brains, and in turn, ourselves, this translation process is by no means limited to brain imaging. The processes by which DNA is extracted from a saliva sample, processed on a genotyping chip, and turned into a report render DNA a receivable-fact, and the DNA test report becomes the backbone along which other stories and evidence form. Similarly, as I discuss at greater length below, testing for Lyme Disease produces a report that, when positive, serves to certify the presence of Lyme disease. Test reports can also be understood in relation to what Dumit calls “objective-self fashioning,” 86 a process of incorporating and responding to received facts to retool an 85 In this section, when I refer to the “test report” in the context of 23andMe, I refer to the report that is produced and delivered to consumers upon completion of their DNA laboratory test. When I refer to the “test report” in the context of CanLyme and Lyme disease, I refer to any number of artifacts: the tick, a positive Western Blot test result, and a variety of forms and lists supplied on CanLyme’s website that are designed to be completed by the patient (a kind of self-test). Importantly, certification and diagnosis are not the same thing. As I will show, both 23andMe and CanLyme’s artifacts of certification function as evidence and are represented as tools to procure a diagnosis from a healthcare provider. 86 Dumit also uses the term “objective self-fashioning” in Drugs for Life. I prefer the term “objective-self fashioning” that he offers in “Is it me or my brain” and Picturing Personhood. The latter foregrounds the centrality of the objective-self. The following passage is from the footnote in “Is it me or my brain”: “We keep a dash in objective-self because we need to highlight that it refers to how we are to ourselves and to society an object of science and medicine, not how we ‘objectively’ are to science and medicine. Our concern thus centres around the 107 understanding of self (“Is it me” 39). Objective-self fashioning names the process of responding to received facts. For example, Dumit offers, “We ‘know’ we have a brain and that the brain is necessary for our self is one aspect of our objective-self… With received-facts we fashion and refashion our objective-selves” (39). With a test result certifying Lyme disease or a genetic variant linked to the presence of celiac disease, for example, one can “know” that one has said disease, and this knowledge in turn becomes a part of one’s understanding of self. CanLyme and 23andMe, then, share this second piety of Revelation: that received-facts provide certification of the health state. In the CanLyme literature, the term “test” is used to describe any number of diagnostic procedures, including, for example, checking for the presence of a bullseye rash: “Some doctor’s [sic] base their diagnosis on the presence of the classic ‘bull’s-eye’ rash, and don’t require further tests” (CanLyme “Testing”). The instability of the term “test” allows CanLyme to offer its users several avenues to certify Lyme disease: not only laboratory tests, but also the tick itself and patient-completed checklists. Each of these Lyme disease artifacts functions as certification of Lyme disease. They are represented as evidence around which other narratives and evidence can form. For CanLyme, laboratory tests may provide certification, but they may also result in renewed uncertainty. While a positive test report may certify Lyme disease, CanLyme cautions that an inconclusive or negative result could be flawed. Consider, for example, this passage about testing on CanLyme’s “Myths” page: Myth: I was tested for Lyme disease at the provincial lab and the results were negative. I guess that means I can't have Lyme. The Truth: Actually, that’s untrue. Evidence suggests that Canada’s Lyme testing methods are flawed. False negative test results are common, especially in the early stages of Lyme. object of science and medicine, not their methods” (39). In contrast, “objective self-fashioning” foregrounds the importance of self-fashioning, as introduced by Stephen Greenblatt in Renaissance Self-Fashioning. 108 It takes time for antibodies to develop, so early tests often miss the bacteria. Contrary to bureaucratic statements, late stage Lyme disease antibody testing is much less accurate. (CanLyme “Myths”) As a palliative to the uncertainties of other testing procedures, CanLyme explains that antigen tests, which look for Lyme protein in body fluids, may provide positive results for those who have previously received negative test results: “People who test negative on other indirect tests may test positive on this test” (“Testing”). In particular, CanLyme points its users towards a test called the Western Blot, as performed by IGeneX Inc.87 In sharp contrast to negative test results, which for CanLyme are always provisional and potentially incorrect, the “positive IGeneX test” certifies the subject as a Lyme Disease sufferer. In emphasizing the possibility of false negatives, CanLyme suggests that a negative result should initiate further rounds of testing, not only by a laboratory, but also by other means. For example, although within CanLyme’s literature the presence of a tick is a source of anxiety, as evidenced through the oft-repeated challenge to spot the two ticks on the child’s face, it is also celebrated as a source of certainty. For example, on “Patient’s Checklist,” a page dedicated to supporting individuals to obtain a Lyme diagnosis, the tick plays a central role in persuasion. The first instruction on this page is “Keep the tick for examination: If you discover a tick on your 87 IGeneX Inc. is a California-based company that provides DTC tests for tick-borne illnesses. The tagline for marketing their test asks, “is tick-borne illness a potential diagnosis? Start with IGeneX” (“Tests and Panels”). Under “Test Kits,” Igenex offers an easy-to-read explanation of how their testing works: “order a test kit, which will arrive at your door ready for next steps to test for Lyme disease”; “complete paperwork with your doctor”; “take kit to blood draw site”; and “get results” (IGeneX “Test Kits). This test system shares similarities with 23andMe’s Direct-to-Consumer model. However, where 23andMe charges $249, IGeneX charges $546 for a panel of tests (including the CanLyme-recommended Western Blot test). The rhetoric of California-based DTC medical testing companies would be a promising area for future research on the relationship between the rise of silicon-valley e-health and changing models of health care. This line of inquiry is, however, beyond the scope of this dissertation. 109 body and remove it before visiting your doctor, keep the tick for future examination. It’s actually easier to test a tick for Lyme infection than to test a person” (CanLyme “Patient’s”).88 The presence of a tick may be used to certify the presence of Lyme disease, but CanLyme provides its users with other avenues to certification as well. As part of their website, CanLyme has produced a downloadable, printable symptom list. “Lyme Disease Symptom List” is a three-page document, in which symptoms are organized by bodily region: head, face, neck; eyes/vision; ears/hearing; digestive and excretory systems; musculoskeletal system; respiratory and circulatory systems; neurologic system; psychological well-being; mental capability; reproduction and sexuality; and general well-being. Each region contains five to ten symptoms—as the CanLyme “Symptoms” page indicates, “there are over 100 symptoms for Lyme disease.” At the end of “Lyme Disease Symptom List,” there is an imploration: “If you have more than 20 of these symptoms, and more importantly symptoms that cross over into other parts or systems of the body, that may come and go, wax and wane in severity then you should investigate Lyme disease.” In his work on the ontological status of pain, rhetorical critic S. Scott Graham notes that “The laboratory practices of contemporary medical science stage an empirical-discursive ontology. That is, they only recognize certain types of phenomena as real. A patient complaint does not fall under that rubric” (61). Graham argues that when patient experience is a necessary part of diagnosis, researchers rely on instruments developed to “discipline” a patient’s report (61). He describes the numeric pain rating scale (NPRS), which asks patients to quantify their pain on a scale of 0 to 10, as an example of instruments that translate patient complaints into quantified reports. The completed symptoms list for Lyme disease functions as its own 88 Material evidence does not always guarantee certainty. As Keranen explains, the “baggy sign”—a term used amongst certain health care providers to describe the common phenomenon of Morgellons patients presenting fibres in plastic bags—may condemn those patients to a diagnosis of delusional parasitosis (“This Weird” 43). 110 instrument of certification: by documenting the presence of at least 20 symptoms, Lyme disease sufferers are equipped with a report that serves as evidence around which other evidence and narratives can fit. CanLyme and 23andMe each relies on and reinforces the piety of Revelation that the test report provides certification of a health state. Like CanLyme, 23andMe maintains the test report as a vehicle of certification while simultaneously undermining confidence in the efficacy of the test. For example, the marketing for 23andMe promises that DNA testing provides evidence by which identities, including health identities, can be certified. Their reports, produced from the saliva submitted through the DTC tests, promise to provide information about the real you—“Meet your genes and discover what 90+ genetic reports have to say about your health, traits, ancestry and more”(23andMe “23andMe”)—even as the fine print included in the package undermines these claims by offering disclaimers about the efficacy, scope, and purpose of the test. 23andMe’s Genetic Health Risk Reports Package includes 21 disclaimers; many of these emphasize that the test is not a diagnosis. Consider the following two points: “These tests do not diagnose any health conditions” (23andMe “Genetic Health Risk Reports Package Insert” 1), and “This test is not intended to diagnose a disease, determine medical treatment, or tell the user anything about their current state of health” (23andMe “Genetic Health Risk Reports Package Insert” 2). The first statement appears under the heading, “Important,” while the second appears under the heading “Warnings” (23andMe “Genetic Health Risk Reports Package Insert” 1-2). While these disclaimers make clear that this test is not supposed to be used for diagnostic purposes, they also serve another purpose: they make visible the tension between certification, on the one hand, and diagnosis, on the other. 111 The tension between certification and diagnosis becomes visible in the test report’s use of “positive” and “negative.” As Majdik explains, “In nongenetic testing, positive and negative construct a prescriptive binary: they draw from the institutional vocabularies of medicine and clinical healthcare to set up a binary either-or situation in which the existence of a disease-causing agent—and as a corollary, a disease, is either proven or disproven” (584). 23andMe retains the use of “positive” and “negative” in their test reports. While this is not factually incorrect as they report on the presence or absence of specific mutations, communicable in a binary of positive and negative, their tests neither prove nor disprove the existence of a disease-causing agent. DTC genetic tests, Majdik explains, “reveal mutations that signal susceptibility to a disease, but rarely the physical presence of that disease” (584). While a positive result on 23andMe’s test report may not signal the presence of a disease-causing agent, or in turn, a diagnosis, it may become a piece of evidence around which other evidence and narratives can be fitted, certifying that one’s DNA has already determined a future health outcome. Furthermore, the test results are initiated into the medical realm, used by test-takers to “inform health-related lifestyle decisions and conversations with their doctor or other healthcare professionals” (23andMe “Genetic Package Insert” 2). By urging their test-takers to consult with a healthcare provider about the results of a test that indicates susceptibility to, or risk of, a disease, 23andMe’s test reports demonstrate the way genetic testing expands health jurisdiction from treating diseases to treating risks. In a sample report found on 23andMe.ca, fictional test-taker “Clark” is informed that he has a genetic variant linked to Alpha-1 Antitrypsin Deficiency (AAT), a genetic condition that can lead to lung and liver disease caused by decreased levels of the AAT protein: “Clark, you have two copies of a genetic variant linked to AAT deficiency. People with this result have an increased risk of developing lung and liver disease related to AAT deficiency” (23andMe “Alpha-1,” bold in 112 original). The report establishes a logical syllogism. Here, the major premise is “People with two copies of a genetic variant linked to AAT deficiency have an increased risk of developing lung and liver disease”; the minor premise is “Clark has two copies of a genetic variant linked to AAT deficiency.” The logical conclusion of the major and minor premise appears further down the page: “You have an increased risk of developing lung and liver disease related to AAT deficiency based on your genetic result. It is important to discuss this result with a healthcare professional” (bold in original). Although the report technically provides information about genetic conditions that could lead to lung and liver disease—in this case, the report informs Clark that he has an increased risk of developing lung and liver disease—there is a slippage between future lung and liver disease and AAT deficiency as a condition that needs to be treated. The report includes a section titled “About Alpha-1 Antitrypsin Deficiency” providing information organized under the following headings: “When it develops”; “Potential signs and symptoms”; “How common is the condition?”; and “How it’s treated” (23andMe “Alpha-1,”). These headings alone present AAT deficiency as its own condition: “it” develops, has signs, symptoms, and an affected population, and requires treatment. For example, under “How it’s treated,” the report reads: “There is currently no known cure” (23andMe “Alpha-1”). A number of scholars writing in Critical Health Studies, broadly speaking, have identified the increasing push to treat risk conditions as diseases. For example, Ray Moynihan and Alan Cassels have highlighted that although high blood pressure is not in itself a disease, adults are increasingly being encouraged to seek treatment for this risk condition (see Selling Sickness). And as Dumit writes, “Medical observers have noticed that the vast majority of illnesses today are treated as chronic and that being at risk for illness is often treated as if one had a disease requiring lifelong treatments, drugs for life” (Drugs 6). Although 23andMe’s AAT deficiency 113 report claims to provide information only about an increased risk for lung and liver disease, the deficiency itself is presented as a condition that requires immediate and ongoing attention. In other words, the report functions as a vehicle for the certification of a health state: the report is not a diagnosis, but it certifies a genetic deficiency that is, in itself, represented as a condition requiring attention. Persuasion So far, this chapter has shown that CanLyme and 23andMe share two pieties: first, that a para-human actor may determine a current health state; and second, that received-facts about the encounter with this para-human actor provide certification of the health state. But, as I have suggested above, both CanLyme and 23andMe also highlight the distance between certification and diagnosis. This section will detail a third piety – that each instance of revelation requires a new cycle of proselytizing and persuading. Although a test result may certify a health state, this is a personal revelation. Once armed with this information, individuals must persuade their health care providers to pronounce the diagnosis and treat them, and persuade a broader public to recognize the diagnosis and support them. The CanLyme website provides its users with documents to fill out and take to their healthcare providers in order to facilitate a Lyme diagnosis. CanLyme provides a “Lyme questionnaire” for individuals to download and fill out. This form “is not meant to be used as a diagnostic scheme, but is provided to streamline the office interview” (“Lyme Questionnaire” 1). The questionnaire lists symptoms associated with Lyme disease and asks the user to document the current severity (none, mild, moderate, or severe) and current frequency (never, occasional, often, or constant) of said symptoms. As Dumit points out, by using checklists and other tools of persuasion, patients are able to take a mechanical form of diagnosis and actively try to convince their doctors of a diagnosis, rather than passively waiting to be diagnosed (Drugs 80). 114 CanLyme’s “Lyme Questionnaire” facilitates a revelation within the user, acts as certification of that revelation, and serves as a tool to persuade a doctor to provide a diagnosis and treatment. CanLyme also encourages its reader to move from considering Lyme disease, to probably having Lyme disease, to seeking medical care. On their “Patient’s Checklist” page, CanLyme asks, “Do you suspect you’ve contracted Lyme disease? If so, there are specific steps you should take to improve your chances of receiving a proper diagnosis.” CanLyme then provides a patient checklist: “You can assist your doctor in making a correct diagnosis by following our ‘Patient’s Checklist.’” This checklist advises taking six steps before visiting a doctor: keep the tick for examination, take photos of your rash, make notes of common Lyme symptoms, try to remember when and how you were infected, keep a timeline of your symptoms, and mention CanLyme as a reference. According to Dumit, checklists function as a kind of rite of passage, where a person is unmade and then remade into a different person. In the case of DTC advertising campaigns, healthy people become potentially sick people, or “patients-in-waiting” (Drugs 72).89 CanLyme’s checklist functions in a similar way: the revelation that one’s health state could be determined by Lyme disease involves an identification as a patient; the possibility of Lyme disease becomes a certainty when one follows the patient checklist. Consider the fourth item on the checklist: “Try to remember when and how you were infected.” This instruction is not presented as a conditional imperative, such as, try to remember if you have been in areas where you could have been infected. Rather, users are instructed to remember how and when they were infected, which necessarily implies that an encounter with a tick has definitely taken place.90 89 The use of checklists is a wide and growing phenomenon, much in use by DTC pharma marketers, for example, to, in the words of Emmons, facilitate the “transition from reader to patient” (“Uptake” 134). 90 In the “Stories” section of CanLyme’s site, which I discuss in more detail later in this chapter, “Kate” receives a positive IGenex test result. This certification provides Kate with evidence that she has, in the past, had an encounter with a tick: “I do not remember being bitten by a tick, although I grew up in Massachusetts, where Lyme is endemic, and I frequently visit my parents there. I also could have contracted the disease in Indiana or in Southern Ontario” (CanLyme, “Kate’s”). Here, the received-fact of the positive test results functions as evidence around which the rest of Kate’s life can be fitted. 115 This instruction produces a kind of certification of an encounter. Being able to document and detail where and when an infection may have occurred is by no means a diagnosis, but it is a step towards translating a personal revelation of Lyme disease into a certification about that disease, which may, in turn, persuade a medical professional to provide a diagnosis. 23andMe, like CanLyme, emphasizes the importance of persuading medical professionals in moving from received-knowledge to diagnosis. Like CanLyme, 23andMe also complicates the directionality of the patient/doctor diagnostic relationship. In their package insert, 23andMe repeatedly emphasizes the importance of the doctor. Consider the following points outlined in the “Warnings” section of the package insert: • These tests are not a substitute for visits to a healthcare professional. You should consult with a health care professional if you have any questions or concerns about your results. • Some people feel a little anxious about getting genetic health results. This is normal. If you feel very anxious, you should speak to your doctor or a genetic counsellor prior to collecting your sample for testing. You may also consider getting your test done by your doctor. • As with every test the possibility for an incorrect result exists. Speak to your personal healthcare professional or a genetic counsellor if your results are unexpected. • This test is intended to provide users with their genetic information, which may inform health-related lifestyle decisions and conversations with their doctor or other healthcare professional. • Healthcare professionals should base diagnostic or treatment decisions on testing and/or other information determined to be appropriate for each patient. (23andMe “Genetic Health Risk Reports Package Insert” 1-2) 116 These warnings maintain the role of the healthcare provider not only as a gatekeeper in providing diagnoses, but also as a context-provider for taking the test and reviewing results. 23andMe directs users to consult with healthcare providers about the results of their test, and in some cases, even about the possibility of having a doctor administer the test. 23andMe market their test as being incredibly simple to administer: “Three steps. It’s simple. All from home. No blood. No needles. Just a small saliva sample” (“How it works”). In other words, part of the appeal of 23andMe is that it does not seem like a medical test. Although one can have a test done through a doctor, in which case results can be explained and contextualized, this is not mandatory: it can be done from home and does not require any medical expertise. The suggestion that one should consider having their test done by their doctor, then, draws particular attention to the medical nature of the test—that is, despite the fine print that this test is not intended to diagnose or provide information about a health state, it does involve testing DNA for genetic risks, and requires follow-up with a medical professional to move from certification to diagnosis. Both 23andMe and CanLyme recognize the role of medical professionals in diagnosis, and as such, they both provide users with instructions, documents, and in some cases strategies, to persuade their health care providers to provide a diagnosis and treatment. They also both instruct their users that once one has had the revelation that their health state has been shaped by a para-human actor, one must actively proselytize to broader publics. 23andMe and CanLyme both solicit users to share stories of their revelations with broader communities to support and reinforce their new identities as, for example, Lyme disease sufferers or individuals importantly at risk for a serious disease. By placing testimonies on their websites, CanLyme and 23andMe provide examples of individuals who have uncovered life-changing information about themselves. 117 Online forums can serve as platforms through which users can compare, among other things, diagnoses, diseases, symptoms, strategies for negotiating healthcare systems, and experiences. Message boards, chat rooms, and other digital spaces of health conversations are increasingly interesting to qualitative health researchers. For example, Ashnish Sinha et al. explore online health forums for chronic cough, and argue that users usually sought help, provided advice, or suggested diagnoses and treatments. Tarryn Phillips and Tyson Rees investigate online forums for sufferers of Multiple Chemical Sensitivity and argue that patients use forums to exchange information about diagnosis, referrals, and potential causes, in part to “render their condition more recognizable to experts and to better understand the cause of their own suffering” (229). Similarly, Dumit shows that patient chat rooms serve as an arena for patients to mobilize facts in order to legitimate illness (see “Illnesses”). In their analysis of discussion boards for individuals living with bipolar disorder, David C. Giles and Julie Newbold argue that there is an interplay among official diagnosis, or a diagnosis from a healthcare provider, and “other-diagnosis,” a term in general use for diagnosis by someone other than a doctor, or the phenomenon in which community members offer diagnoses to another party (422). Giles and Newbold explain that, although there is a kind of reverence for official diagnosis in these communities, as such a diagnosis confirms identity, members also participate in “other-diagnosis” as a way of supporting one another. The testimonies found on CanLyme and 23andMe’s websites can be read as sources of support: they invite their audiences to imagine what they too could uncover about themselves by engaging with the services and communities that these organizations host. 23andMe, through their “Stories” page, uses personal testimony as a way of building a client base: each person persuaded will buy a test, and in doing so, will provide 23andMe with their genetic data. CanLyme offers those who have had a personal revelation about Lyme disease a platform to 118 share their stories with the hopes that more individuals will recall a tick encounter and seek testing and diagnosis. These stories are of particular interest for this chapter, because, in their conventional narrative forms, they exemplify all three of the pieties of Revelation that have been outlined thus far: that an affectual para-human actor may determine a current health state; that received-facts about the encounter with this para-human actor provide certification of the health state; and that each instance of revelation requires a new cycle of proselytizing and persuasion. The stories on both sites are, in the terms of Arthur Frank, “testimony.” Testimony calls upon its audience to enter into a relationship with what they are told. As Frank states, “Testimony is distinct from other reports because it does not simply affect those who receive it; testimony implicates others in what they witness” (143, emphasis in original). Although the “Stories” section of 23andMe’s website does not have a discussion component, it does provide testimonies about 23andMe’s role in providing life-changing discoveries through the genetic health report. In other words, each story provides a personal anecdote about how a para-human actor—DNA—was revealed to be the cause of a health state. These testimonies on the 23andMe website entreat their audience to consider whether or not they have had some past encounter that has affected their current health state and imagine what information they may uncover about themselves. Jill’s story, presented on 23andMe’s website, exemplifies all the pieties of Revelation: Jill looks to her DNA test report to understand her current health state; she uses the test as a way of certifying this health state; and she practices persuasion. The story’s headline, next to a photo of a 30-something white woman, reads, “My results allowed me to keep myself healthy.” As the story goes, Jill and her husband took the tests to learn about traits and family history, “but for Jill the stakes proved to be considerably higher.” Jill opted into genetic health risk reports, and she learned that she had a BRCA1 mutation and thus a higher chance of developing breast and 119 ovarian cancer.91 Jill’s story continues, “But her results gave her something else as well—a sense of resolve. Determined to do everything in her power to protect her health, Jill consulted with genetic counsellors and doctors who recommended a course of action, which she follows.” The story concludes: “Jill continues to take preventative steps to monitor her health, and even serves on the leadership council of Basser Centre for BRCA. For her, BRCA awareness is both a personal and public issue.” Jill was particularly interested in how her ancestral DNA has shaped her current state of being, and this research provided a moment of revelation: she has a heightened risk of breast and ovarian cancer. Although having a heightened risk is not the same as having a disease, it functions as its own health status requiring consultation with a doctor and a course of action. Jill has taken steps to persuade her doctors to provide this course of action, and by sharing her revelation with a larger public, which Jill performs by serving on a BRCA board and by allowing her story to be featured on 23andMe’s website, she has also acted to persuade other people to acknowledge her presence in Sontag’s “kingdom of the sick.”92 23andMe informs readers of Jill’s story, “For her, BRCA awareness is both a personal and public issue” (23andMe “Stories”). Through this story, 23andMe provides the reader with a sense that the test provides information, certification, and a purpose, and in doing so relies on the orientation of Revelation to sell its product. Also found on 23andMe’s website, Alix’s story exemplifies the piety that received-facts certify a health state and highlights the tension between certification and diagnosis. According to 91 Perhaps unsurprisingly, a number of the stories on 23andMe’s website involve BRCA discoveries. A 23andMe report that communicates a positive BRCA result is an especially powerful marketing tool, as it forecasts a high probability of future diagnosis. 23andMe is also the first DTC genetics company to receive FDA authorization to test for cancer risk without a prescription (Rabin). Until this approval, testing of BRCA genes required a doctor’s referral and was limited by medical guidelines to women who have already had cancer or with a history of breast or ovarian cancer (Pollack “New Genetic Tests”). 92 In Illness as Metaphor, Susan Sontag writes, “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of this sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place” (1). 120 the website, “After a friend recommended 23andMe, Alix saw that she had a genetic likelihood of being lactose intolerant—everything made sense” (23andMe “Stories”). The 23andMe test report certifies the health state—even though the report identifies “a genetic likelihood,” it becomes a piece of evidence around which other narratives and evidence can be fitted. Alix took this received-fact to the doctor, made lifestyle changes, and is “enjoying life with her young daughter and husband again” (23andMe “Stories”). By having her DNA tested, Alix is able to certify her lactose intolerance, and persuade her doctor of a course of treatment, reinforcing the piety that received-facts about the encounter with this para-human actor provide certification of the health state. The reader is reminded that certification and diagnosis are not the same things, when immediately below this story, 23andMe repeats this disclaimer: “23andMe is not intended to diagnose any health condition. You should consult a healthcare professional before making any major lifestyle changes” (“Stories”). CanLyme also features a “Stories” page, which features testimonies by individuals who have had a Lyme revelation. Just as the stories on 23andMe’s website share a narrative structure, so do the testimonies on CanLyme’s website. In the stories posted on CanLyme, testimonies recount experiences of persistent pain or other symptoms, the difficulty of finding a diagnosis, a memory of a tick encounter, and the discovery of life-changing information. In the “Lucky in Lyme” story that opened this chapter, the protagonist, Lisa, explains that her own health condition was caused by a past encounter with a tick. This discovery provided her with an explanation and a course of action. This orientation—or way of perceiving the world—has been so effective for Lisa that she reproduces the pieties of Revelation for others who are reading her post. Lisa explains that she suffered from undiagnosed pain and fatigue until she was informed by her mother that she could have Lyme disease. Lisa met with a doctor, who had consulted with an infectious disease doctor about her case: 121 He said that the ID doctor told him that “there is no such thing as Lyme disease in Alberta,” that “Lyme patients are militant and just want antibiotics,” that “you are sick because you’ve been reading about Lyme disease and therefore are manifesting the symptoms,” and that “you can’t be sick because you look great!” He basically gave me every Lyme stereotype in a matter of one minute!! If I hadn’t been so beaten down, I would have laughed. Yes, Dr. Yan, there is Lyme Disease in Alberta, and yes, I would like antibiotics – I’m not asking for crack cocaine! Yes, Lyme patients are militant because they have been treated like lepers for years. Yes, I have been reading about Lyme because no doctor seems to know anything about it, and yes, I look pretty damn good today thank you, but you have no idea what’s going on inside my body!! Most scary for me was when he said, “I have many patients who are sick, and we don’t know why. That’s just the way it is.” I wanted to strangle him and say, “Maybe those patients have Lyme Disease!!!” (CanLyme “Lucky”) This passage is notable for several reasons. First, it highlights the difficulty of receiving a diagnosis without certification documents. Both CanLyme and 23andMe promise that users may use reports and other documents to facilitate discussion with their health care providers. Lisa describes difficulties in persuading her doctor of the presence of Lyme disease without such documentation. Second, this passage highlights the role of CanLyme’s “Myths” page in shaping Lisa’s understanding of Lyme disease. Lisa’s frustration can be traced to the reading she has been doing on CanLyme. The website provides a sense of what responses to Lyme disease are appropriate and inappropriate and it identifies common misconceptions about Lyme and ways of refuting them. This passage also recounts Lisa’s reaction to her doctor’s declaration that he has many patients who are sick for unknown reasons. Her response—“I wanted to strangle him and say, 122 ‘Maybe those patients have Lyme disease!’”—demonstrates the piety that Revelation requires persuading both a doctor and broader publics. Lisa’s knowledge of these other patients is limited: she knows that they are patients of her doctor and she knows that they are sick for “unknown reasons.” By posting her story on CanLyme, Lisa shares her experience of revelation, and invites others to consider that their ailments may be caused by Lyme disease. The stories found on 23andMe and CanLyme websites not only reinforce the piety that instances of revelation require proselytizing and persuading broader publics, but they also exemplify how the site’s users take up all three pieties of Revelation in their own understandings of genetic test results or Lyme disease, respectively. In this chapter, I have juxtaposed seemingly disparate sites, CanLyme and 23andME, to draw out the confluences of health awareness orientation as Revelation. This orientation’s pieties both rely on and reinforce an altar of health that is characterized not by the absence of disease, but by the acknowledgement of a health state already in play. For CanLyme, a Lyme disease diagnosis is in itself something to strive towards, as it provides a sense of certainty. Similarly, 23andMe offers information about DNA to facilitate a greater understanding of one’s current health state. In other words, the orientation of Revelation demands the conflation of health and information: identifying the cause of one’s health state, and attaining certification for that cause, is pious. In my next, concluding, chapter, I offer a set of characteristics shared across health awareness orientations of Optimization, Preparedness, and Revelation, and I present two examples of “failed” health awareness. I show that DSM 5’s description of Illness Anxiety Disorder pathologizes the very behaviours that certain health awareness orientations demand. I also present the recent case of “Baby Ezekiel,” whose parents were prosecuted for not recognizing the signs of meningitis, and I show this story is as much about health awareness— 123 namely, the wrong health awareness orientation—as it is about failure to seek appropriate medical care or practice parental responsibility. Through these two cases, I emphasize the importance of a nuanced understanding of health awareness. I show that the very beliefs and practices that are celebrated, encouraged, and in some cases, required by health awareness orientations are, in certain cases, the same beliefs and practices that are pathologized and even punished. 124 CONCLUSION So far, I have demonstrated that the concept and the practice of health awareness include more than the provision of information and indicate more than a simple public good. Drawing on a theoretical framework provided by Burke, I have argued that health awareness is a series of orientations: bundles of judgements about what kinds of health should be worshipped (altars) and what beliefs are appropriate for such worship (pieties). Different health awareness orientations—I have described three—provide different bundles of judgments of what health is and how to attain it. Chapter 1 juxtaposed ParticipACTION’s and Fitbit’s websites to show that both organizations rely on and reinforce an orientation of Optimization. I argued that these organizations provide their audiences with a sense of how to conduct themselves around the orientation of Optimization’s altar of health, where health is a socially and physically fitter (optimized) self, always just out of reach and attainable in the future. I focused on two specific pieties of Optimization: that more movement is always better, and that time is a resource to be managed. By comparing ParticipACTION and Fitbit’s representations of movement on their websites, I showed that both organizations enforce that one can always be moving more. The messages on these sites prioritize the importance of everyday movement over compartmentalized, intentional workouts and privilege movement detected through technological devices. I also illustrated, invoking Adams et al.’s concept of anticipation, how Optimization requires an understanding of time as a resource to be managed. In ParticipACTION’s and Fitbit’s websites, goals and children are both presented as strategies for securing a fitter self in the future. Chapter 2 described the orientation of Preparedness and compared its pieties as they appear in campaigns by Colorectal Cancer Canada, on the one hand, and critical-illness insurance marketing, on the other. Relying on Bitzer’s definition of rhetorical exigences, I 125 showed that cancer awareness campaigns and critical-illness insurance marketing both instruct their audiences to prepare for cancer diagnosis, and its aftermath, by following three pieties: that knowing one’s risk guards against surprise; that screening facilitates early detection by uncovering incipient disease; and that knowing about symptoms provides opportunities for diagnosis. I argued that pieties of Preparedness provide an approach to the orientation’s altar of health, where health is not the absence of disease, but rather, the management of it. I describe three case studies— Colorectal Cancer Canada’s “Reduce Your Risk for Colorectal Cancer!” and “Endangered Butts,” and a set of critical-illness insurance marketing—and show that, while the first two encourage preparedness for the possibility of diagnosis by informing viewers about their risk for cancer and cancer-related death, the third relies on the same set of pieties but deploys them in a way that promotes preparedness for the challenges of critical-illness survival. Chapter 3 discussed the websites of Canadian Lyme Disease Foundation (CanLyme) and 23andME and described their shared orientation of Revelation. I argued that this orientation is premised on a realization that a determinative encounter has occurred in the past, and that this orientation requires three pieties: first, that a para-human actor may determine a current health state; second, that received-facts about the encounter with this para-human actor provide certification of the health state; and third, that each instance of revelation requires a new cycle of proselytizing and persuading. I suggested that together, these pieties provide an approach to the orientation’s altar of health, where health is the acknowledgment of a health state already in play. I illustrated, invoking Actor Network Theory, the determinative role that the tick and DNA play, respectively, in shaping a temporally complex relationship to one’s health. Furthermore, I identified a tension between what I called “certification” (a piece of information around which other narratives and evidence can be fitted) and diagnosis. This tension serves to both undermine and reinforce the role of the doctor or other health care provider. I also illustrated how post- 126 revelation involves the persuasion of medical experts to diagnose and provide a course of treatment, and the persuasion of broader publics to recognize the diagnosis and support them. The different health awareness orientations that I described in the three substantive chapters share some overarching characteristics that provide a sense of what health awareness orientations entail. Crucial to my argument is the point that health awareness does not have a single referent. I have shown that when we talk about health awareness, we are not always talking about the same thing. As orientations change, the iteration of health that we worship, and the beliefs required for this worship, also change. Nevertheless, there are consistencies across different health awareness orientations. In particular, a health awareness orientation does the following: reinforces a temporality that stipulates the future and the past are to be known, managed, and secured; is epistemic, insofar as it announces that knowledge about one’s health is something to be pursued; is increasingly technologically mediated, disseminated through apps and websites, and fuelled by client-produced data; is affectively charged, capitalizing on hope and fear; and is a commodity, trafficked by not-for-profit organizations, government agencies, and corporations alike. Throughout these chapters, I have illustrated these characteristics as defining features of health awareness orientations, regardless of the orientation’s specific pieties or altar of health. In fact, the very pieties and pious behaviours that are celebrated, encouraged, and in some cases, required by health awareness orientations are, in other cases, themselves pathologized and even punished. For example, DSM 5’s description of, and diagnostic criteria for, Illness Anxiety Disorder pathologizes the very beliefs and behaviours that certain health awareness orientations demand. The recent case of “Baby Ezekiel,” whose parents were prosecuted for not recognizing the signs of meningitis, is a story as much about health awareness—namely, the wrong health awareness orientation—as it is about failure to seek appropriate medical care or practice parental 127 responsibility. These two cases demonstrate the importance of a nuanced description of health awareness and the recognition that health awareness messaging comes to us from disparate and multiple sources while also illustrating the way that health awareness orientations appear in public discourse. The diagnostic criteria for Illness Anxiety Disorder93 pathologize the very behaviours that certain pieties of health awareness demand. The DSM-5 stipulates that an individual may qualify for a diagnosis of Illness Anxiety Disorder if she: demonstrates a “[p]reoccupation with having or acquiring serious illness,” and this preoccupation is “excessive or disproportionate”; “is easily alarmed about personal health status”; “performs excessive health-related behaviours,” such as bodily checking for signs of illness, or avoids medical care altogether; has exhibited preoccupation with illness for at least six months; and fails to have her experience explained by another mental disorder (“Illness Anxiety”). These diagnostic criteria can be read through the various pieties of health awareness orientations discussed in earlier chapters. Pieties of Optimization, discussed in Chapter 1, and pieties of Preparedness, discussed in Chapter 2, require that individuals practice self-surveillance and vigilant monitoring of their health states. However, the diagnostic criteria for Illness Anxiety Disorder inform us that these pieties are appropriate only to a point. While tracking one’s bodily abilities in the name of self-improvement, or monitoring oneself for nascent symptoms of cancer, are encouraged as pieties 93 Segal and Belling have written about Illness Anxiety, and Hypochondriasis (a diagnosis in DSM 4 that was replaced, in DSM 5 with Illness Anxiety Disorder and Somatic Symptom Disorder), as a rhetorical and a postmodern illness, respectively. According to Segal, Hypochondriasis is a rhetorical disorder both because hypochondriacs must persuade physicians and others that they are ill and in need of care and because hypochondria appears differently depending on time and place (Health 75). Drawing on Segal’s work, Belling writes about Hypochondriasis as a distinctly postmodern illness because at its core is a problem of knowledge and certainty. She writes, “Hypochondria focuses our attention on the unreliability of connections between illness and disease, symptoms and lesions, experience and matter” (Belling 3). 128 of Optimization and Preparedness, individuals who perform excessive bodily checking, such as those who “often examine themselves repeatedly” (“Illness Anxiety”), may be pathologized. The pieties of Revelation also provide a lens to assess how these diagnostic criteria pathologize behaviours that may otherwise count as pious. As explained in Chapter 3, a necessary part of the orientation of Revelation often involves persuading a health care provider of the need for diagnosis and treatment. However, these processes of persuasion, encouraged by CanLyme and 23andMe, may be deemed pathological as well. For example, DSM-5 describes the following behaviours as criteria for a diagnosis of Illness Anxiety Disorder: They often consult multiple physicians for the same problem and obtain repeatedly negative diagnostic test results. At times, medical attention leads to a paradoxical exacerbation of anxiety or to iatrogenic complications from diagnostic tests and procedures. Individuals with the disorder are generally dissatisfied with their medical care and find it unhelpful, often feeling they are not being taken seriously by physicians. (“Illness Anxiety”) This passage highlights that conversion attempts must be successful to be considered legitimate, as failure to persuade health care practitioners to diagnose a condition may, according to DSM-5, indicate an anxiety disorder. While health awareness orientations discussed in previous chapters facilitate the cultivation of identities around optimizing fitness, preparing for the possibility of cancer diagnoses, or uncovering a determinative encounter in the past, this cultivation of identity may also be read as disordered behaviour. According to DSM-5: “Illness becomes a central feature of the individual’s identity and self-image, a frequent topic of social discourse, and a characteristic response to stressful life events” (“Illness Anxiety”). Illness Anxiety Disorder alerts us to some of the internal contradictions of health awareness. For example, the DSM-5 explains that “Individuals with [I]llness [A]nxiety 129 [D]isorder are easily alarmed about illness, such as by hearing about someone else falling ill or reading a health-related news story” (“Illness Anxiety”). However, as I have shown in all three chapters, health awareness is affectively charged, capitalizing on anxiety, hope, and fear. Public service announcements and commercial products that provide information about health states, possible diagnoses, and disease risks, rely on these emotions as a way of securing and motivating an audience. Thus, a paradox of health awareness is that one must be simultaneously affected and not overaffected by the endless barrage of health- and illness-related information, appeals, and warnings. As my emphasis on pieties indicates, there are proper ways to be aware. While awareness pieties are often socially sanctioned—“the sense of what properly goes with what” (Burke Permanence 75)) emerges from particular discourse communities or publics—there are situations where awareness extends beyond effective and becomes problematic. The case of “Baby Ezekiel,” in which a Canadian couple was found guilty of failing to provide the necessaries of life to their 19-month-old son, is a case about health awareness. I suggest that the criminal sentences that the parents received reflect implicit judgments about health awareness orientations, or lack thereof. It is not my intention here to interrogate whether or not this ruling was right, nor to minimize the gravity of the death of a child. Rather, I present this example, as described by Canadian news sources, to suggest that the story here is as much about health awareness—namely, the wrong health awareness orientation—as it is about the failure to seek appropriate medical care or practice parental responsibility. I use this case to demonstrate how a nuanced description of health awareness provides a possible framework for understanding cases where parents are accused of medical neglect of a child.94 94 Other examples include the 2006 case of Starchild Abraham Cherrix, whose parents were accused of medical neglect of a child after supporting their son’s decision not to undergo further conventional medical treatment for Hodgkin disease (“Starchild”), and the 2014 case of “J.J,” an Indigenous girl from Ontario, whose mother halted conventional chemotherapy treatment and took J.J. to a holistic healing centre in Florida (Grant “Aborignal”). 130 According to a Global News story (The Canadian Press), the case of Baby Ezekiel goes as follows: in late February 2016, Ezekiel developed what his parents, David and Collet Stephan, first thought was a cold, and then croup. The Stephans gave Ezekiel smoothies, olive leaf extract, garlic, hot peppers, and horseradish, and used a humidifier. In early March, Ezekiel appeared to improve and then worsen, at which time a family friend who was a registered nurse checked his vital signs and suggested that he could have viral meningitis; she told Collet to bring Ezekiel to a doctor. The next day, March 13, the Stephans visited a naturopath. That night Ezekiel was taken to the hospital by ambulance after he stopped breathing. Ezekiel died in hospital, March 16, 2016. David and Collet Stephan were convicted in 2016: David was sentenced to four months in prison and Collet was sentenced to three months of house arrest (Grant “Parents”; Bell). The crux of this case, as represented by Canadian media sources, hinges on the fact that “rather than seeking medical treatment for the boy, Ezekiel, [the parents] used natural remedies and homemade smoothies” (Bell) and took him to a naturopath instead of a medical doctor. Perhaps the most obvious way to make sense of this case is in terms of the ethics of responsibility – especially, the choice between making decisions for oneself alone and making decisions for one’s child. Globe and Mail health reporter, Andre Picard, takes this approach: Individuals are free to believe what they want, and to embrace all manner of pseudoscience and conspiracy theories. Adults can refuse blood transfusions, vaccination, cancer treatment, psychiatric care and all other beneficial medical treatments as they see fit. But what the court ruled is that right does not extend to denying the necessities of life to children. (Picard “Belief”) David and Collet Stephan believed “parents should be free to raise their children without ‘interference’” (Grant “David”). David and Collet Stephan made choices, and they made them in a neoliberal context in which choices are both a right and a responsibility. This was the argument 131 of prosecutor Julie Morgan, who stated, “Choices have consequences and in this case the consequences were tragic” (Grant “David”). However, this story is as much about health awareness as it is about the failure to seek appropriate medical care or to perform one’s parental responsibility. I draw attention to the way that health awareness appears in this case to suggest that the conviction and sentencing of the Stephens can be understood as punishment for adopting the wrong health awareness orientation. In all, the Stephans did not act according to any of the following: that time is a resource to be managed; that knowing one’s risk (or in this case, a child’s risk) guards against surprise; and that knowing about symptoms provides opportunities for diagnosis. This conviction of the Stephans, particularly their sentencing, not only represents a punishment for failing to perform the pieties of Optimization and Preparedness, but it can also be understood as a punishment for adopting the wrong health awareness orientation. I mentioned above that David was sentenced to four months in prison, while Collet was sentenced to three months of house arrest. The differential sentencing can be explained in terms of pieties of awareness when one considers the following detail about the sentencing: “Before handing down the differing sentences for the couple, the judge pointed out that Collet did research and called a nurse about her son’s illness. By contrast, he said, David simply got more nutritional supplements and, instead of calling 911, called his father” (Bell). Here, there is a direct relationship between the pieties of awareness and the severity of the sentence: Collet engaged in some appropriate awareness practices, such as doing research and consulting a health care provider; David behaved inappropriately by seeking information outside of biomedical expertise. Colleen Derkatch has argued that the rise of complementary and alternative medicine (CAM) in the late twentieth century has not expanded what counts as mainstream medicine, but rather has more firmly entrenched the boundary between what counts as medicine and what does 132 not (5). David Stephan’s awareness practices reside on the wrong side of this boundary. The sites to which he turned for information and support were inappropriate. As an appeal judge asked the Stephans’ lawyer, “If you hear the M-word, don’t you panic? … This isn’t something you consider over a period of time—if it’s meningitis, you act now” (Grant “David”). Collette Stephan, and especially David Stephan, adhered to the wrong health awareness orientation: they worshiped at an altar of health where health is understood as harnessing the healing power of the body, and performed the pieties that parents should raise children without interference, and that vitamins and naturopaths are the means to obtain a properly functioning body. By understanding iterations of health awareness as orientations, each characterized by an altar of health and its related pieties, I have offered a framework for identifying, analyzing, and describing the multiple referents of health awareness. Further research may illuminate other health awareness orientations. For example, additional research might compare wealth-management marketing with campaigns for annual health checkups to interrogate the health awareness orientation of Financialization. This orientation might entail the conflation of health and wealth, the migration of financial metaphors into the realm of health and vice versa. This orientation’s altar might be understood as an ideal of health as financial wellness. Its pieties might include the beliefs that financial, physical, and mental wellness go hand-in-hand, and that regular financial checkups are as important as medical checkups. Additional research might also compare yoga-industry marketing and mental health campaigns to explore the health awareness orientation of Mindful Action, or the practice of mindfulness.95 This orientation’s altar might be best described as health as ontological presence. Its pieties might include the beliefs that stress should be managed through meditation, that one should practice nonjudgment, and meditation 95 This practice has been adopted in the service of healthy ageing, weight management, anxiety and depression reduction, and athletic performance, among other health practices. 133 and non-judgment result in self-knowledge and wisdom. Not only is the framework of health awareness orientations useful for identifying and analyzing multiple referents of health awareness, but this framework is also particularly useful for the identification of failed health awareness orientations. Health awareness is a multifaceted thing. Health awareness not only provides information about possible health harms and benefits, but also informs us about what kinds of people we are, what types of behaviour are admirable or reprehensible, and what actions are responsible or negligent. Health awareness advises us what to fear, anticipate, and prepare for, but also informs us what fears and preparations are disallowed, extreme, or insignificant. By limiting our understanding of health awareness to that which is always in service of a public and personal good, we ignore the ways it appears in other places, in other ways. A nuanced definition of health awareness as a series of orientations allows us to explore how we are asked to understand—in multiple and, at times, conflicting ways by different health awareness orientations—what health is, what it means to be healthy, and what is pious to do in the pursuit of health. 134 WORKS CITED 23andMe. “23andMe.” 23andMe, 23andme.com/en-ca/. Accessed 15 May 2019. ---. “Alpha-1 Antitrypsin Deficiency.” 23andMe, medical.23andme.com/wp-content/uploads/2017/09/AATD_two_PIZ.pdf. Accessed 15 May 2019. ---. “Genetics 101.” 23andMe, 23andme.com/en-ca/gen101/. 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