“A Little Sugar”: Interactions between Professional and Lay Understandings in Diabetes Education
Dissertation
Presented in Partial Fulfillment of the Requirements for the Degree Doctor of Philosophy in the Graduate School of The Ohio State University
By
Sheila Marie Bock, MA
Graduate Program in English
The Ohio State University
2010
Dissertation Committee:
Dorothy Noyes, Advisor
Katherine Borland
Diane Goldstein
Amy Shuman
Copyright by
Sheila Marie Bock
2010
ABSTRACT
This dissertation brings together critical and applied traditions in folklore studies to examine the potential of a performance-based methodology in diabetes health education. Beginning with an examination of health educators’ increasing attention to culture, I suggest that this “cultural turn” has opened up opportunities for educational practices that attend to the variety of resources people draw upon to make sense of diabetes. Using the tools of performance theory to analyze health education as performance, I reveal the educational value of creating spaces of dialogue where health educators and community members can engage explicitly with these multiple perspectives.
This project is based on fieldwork conducted between 2006 and 2009 on a variety of health education initiatives targeting at-risk populations in Central
Ohio. Focusing my analysis on performances of personal experience narratives in formal and informal health education settings, I show how the dialogic nature of these performances does valuable work in helping other individuals make sense of their own experiences and inspire healthy lifestyle changes. At the same time, I raise questions about the assumptions underlying their messages as well as the limits of particular performance strategies for different audiences.
ii Ultimately, I argue that unscripted dialogue presents opportunities for effectively engaging with the process of how people create interpretive
frameworks that accommodate different experiences and ways of knowing.
Contestations and evaluations of knowledge claims are already taking place
implicitly. It is therefore in the best interest of health educators not only to be
aware that these evaluations are happening but to be open and willing to engage
with them respectfully in face-to-face encounters. A performance-based
methodology focused on creating spaces for explicit contextualization and
response would contribute greatly to the work of health professionals engaged in
the fight against diabetes.
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ACKNOWLEDGMENTS
I would first and foremost like to express my sincere gratitude to all the individual community members and health professionals who took the time to share their insights with me during the course of my fieldwork. Without their willingness to share their time and their stories, this dissertation project would not have been possible. I wish to offer a special thank you to Robbie McCauley, whose commitment to community engagement through her performance works planted the seeds for this research project.
I also wish to thank the following centers and departments at The Ohio
State University for financial support that made my research and writing possible:
Center for Folklore Studies, Department of English, Department of African
American and African Studies Community Extension Center, College of Arts and
Humanities Diversity Committee, Project Narrative, Department of Comparative
Studies, and Literacy Studies.
Writing a dissertation is not an easy task, and I am especially grateful to my chair, Dr. Dorothy Noyes, and the other members of my committee – Dr.
Katherine Borland, Dr. Diane Goldstein, and Dr. Amy Shuman – for offering encouraging words, closely reading drafts, and asking the guiding questions that helped me figure out what I was really trying to say. In addition, Dr. Sabra
iv Webber, Barbara Lloyd, Dr. Patrick Mullen, Dr. Ray Cashman, Dr. Margaret
Mills, and my fellow members of the Folklore Student Association have greatly
contributed to my development as a scholar through inspiring courses and
conversations during my time at Ohio State. Of course, I must also offer my
gratitude to Dr. Alan Dundes, whose “Forms of Folklore” course and subsequent mentorship at UC Berkeley was my entry point into the wonderful world of folklore.
Finally, many thanks go to my family. It is difficult to put into words my
appreciation for my mom, dad, and sister Tammy, who never cease in their
unwavering support of what I do. Last but not least, I would like to thank my husband Michael, who I am so lucky to have as a partner in my life.
v
VITA
2003 ……………………………….. Bachelor of Arts in Anthropology, University of California, Berkeley
2005 ……………………………….. Master of Arts in Comparative Studies, The Ohio State University
Autumn 2004 - Winter 2010…….…. Graduate Teaching Associate, Departments of English and Comparative Studies, The Ohio State University
Autumn 2005 - Spring 2008 …………Graduate Administrative Associate and Archivist, Center for Folklore Studies, The Ohio State University
Winter 2010 ……………………….. Dissertation Fellow, Department of English, The Ohio State University
Autumn 2010 …………...... Adjunct Faculty, Department of English, The Ohio State University (Newark)
Publications
“Exotic Identities: Dance, Difference, and Self-fashioning,” co-author Katherine Borland, Journal of Folklore Research 48:1(2011).
Book review. Unfitting Stories: Narrative Approaches to Disease, Disability, and Trauma, edited by Valerie Raoul et al., Western Folklore 68.2/3(2009): 390-391.
"State Jokes." The American Midwest: An Interpretive Encyclopedia. Eds. Richard Sisson, Christian Zacher, and Andrew Cayton. Bloomington: Indiana University Press, 2006. 402-403.
vi
Fields of Study
Major Field: English Minor Field: Folklore
vii
TABLE OF CONTENTS
Abstract ...... ii
Acknowledgments...... iv
Vita ...... vii
Chapter 1: Introduction……………………………………………………………1
Chapter 2: “A Type 1 Diabetic is Just Walking Down the Street…”: Contextualizing Practices in Fieldwork Encounters ...... 433
Chapter 3: “My Diabetes Story”: A Comparative Look at Contextualization .... 722
Chapter 4: Speaking as The Biggest Loser: Experience and the Paradigm of Expertise ...... 100
Chapter 5: “Grappling to Think Clearly”: The Vernacular Theorizing of Sugar...... 1322
Chapter 6: Conclusion ...... 162
Bibliography ...... 175
Appendix A: Transcription Conventions ...... 197
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CHAPTER 1: Introduction
What’s “Pulling the Trigger”?
Identified by Newsweek in 2000 as “the next great lifestyle-disease epidemic to
afflict the United States,” Type II diabetes has joined the ranks of cancer, heart disease,
and obesity, garnering increased attention in both the public eye and the world of health
professionals. 1 While diabetes is understood to have several causes, including genetic
predisposition, its designation as a lifestyle disease calls primary attention to the idea that the disease is not merely caught, but acquired through a lifetime of poor eating and exercise habits (Crawford 1987); in short, it is understood as a disease that is ultimately preventable. One phrase neatly sums up this perspective, a phrase attributed to Dr. Frank
Vinicor of the Center for Disease Control and often quoted in health promotional materials and media stories about the disease: “Genetics may load the cannon, but human behavior pulls the trigger.” The question that follows, then, a question of great interest to
1 Diabetes refers to a condition where the body does not regulate blood glucose levels effectively, and there are three different types of the disease. Type 1 diabetes, formerly referred to as Juvenile Diabetes because it most often affected children and young adults, is caused by an autoimmune response which causes the pancreas to be unable to produce insulin, a hormone necessary for regulating blood glucose levels. Type 2 diabetes, formerly referred to as Adult Onset Diabetes, occurs when the body creates insulin but is unable to utilize it effectively. Gestational diabetes is a form of the disease which occurs during pregnancy for some women. In this dissertation, unless otherwise noted, the term diabetes refers to type 2 diabetes. 1 laypersons, health professionals, and policy makers alike, is this: What is the source of this behavior that, metaphorically speaking, pulls the trigger?
One common explanation circulating in public discourse is that Type 2 diabetes is caused by a lack of individual control (Broom and Whittaker 2004). Consider the following online responses posted to Tara Parker-Pope’s 2009 New York Times piece entitled “The Voices of Type 2 Diabetes,” which included photographs and audio- recordings of six people with Type 2 diabetes talking about their personal experiences:
o “My grand daughter has diabetes type 1. At 13 she has to control her
eating, exercise and constant monitoring. And at 13 she has fantastic
control. All these people in pictures are over wwight [sic]. Where is your
control? Don’t cry sympathy from me.”
o “More than 90% of type 2 diabetes cases can be prevented through proper
diet and exercise. Got pity? How about a discussion of TYPE 1 diabetes,
by people whose disease wasn’t brought on by their lifestyles or anything
they did.”
In these quotes, the people use lifestyle, or lack of control, to call attention to individual choice as the source of blame. In her exploration of the development of knowledge and practices in health education and health promotion, Deborah Lupton explains that “All medical conditions are subject to moral judgments, based on such concepts as personal responsibility for illness and the patient’s compliance with medical advice” (1995:71). Scholars such as Robert Crawford (1980) have also examined how 2 the growing rhetoric of “lifestyle” and the personal responsibilities for “at risk” behaviors
in the seventies and eighties gained political salience. As “non-healthy” living became
equated with the so-called lifestyle diseases, the domain of lifestyle, including eating
habits, came under the realm of medical authority through a process of what sociologist
Natalie Boero terms “the professionalization of common sense” (2007:52), whereby the
basic tenets of healthy living are simple, but individuals need guidance from health
professionals to bring them back on track. ‘Healthy living” in people’s daily life became an issue of compliance,2 but as Martha Balshem points out, “…lifestyle theories of
disease tend to draw from constructions of sick or high-risk people as foolish, morally
flawed, or ignorant” (1993:24).
Another common explanation of what causes destructive health behaviors is
framed in terms of culture.3 In fact, public recognition that culture is a significant force
shaping health choices is so strong that it has become the subject of parody. For
example, in a 2009 episode of 30 Rock, a comedy series set behind the scenes of an NBC
sketch comedy show, the character Tracy Jordan, a dim-witted, self-centered African-
American star of the show, is diagnosed with diabetes. Although the writers of the show present his doctor as incompetent—for example, he does not know how to pronounce the word “diabetes”— he does tell Jordan that he needs to make some serious lifestyle changes, or he could lose a foot to the disease. Kenneth Parcell, a white page at NBC, is very concerned about Jordan’s news because he has seen many people die from the disease, and he tries his best to get Jordan to eat healthier. Jordan, however, dismisses
2 According to Dorothy Blevins and Ilene Lubkin, compliance occurs when “health care behavior is in accordance with health care providers’ recommendations” (1990:155).
3 See, for example, Andrew Murr’s 2007 article in Newsweek, “The Cultural War on Diabetes.” 3 the link between diet and diabetes as “a white myth — like Larry Bird, or Colorado.”
Toofer Spurlock, a Harvard-educated African American writer for the show who typically is appalled by Jordan’s embodiment of stereotypical black culture, supports this theory when he agrees with Jordan and explains that the government spread false information about diabetes after the Civil War to keep newly freed slaves sluggish, which
is why so few people know that it is really caused by sleeping on your back. This
burlesque of a supposed African American distrust of the medical system points to a
growing recognition of how cultural factors influence health-related beliefs and practices.
In highlighting that the two African American characters Jordan and Spurlock
share the seemingly outlandish beliefs about diabetes, the writers of this scene
communicate that 1) the beliefs are determined by the characters’ cultural (i.e., racial)
backgrounds and 2) culture is an authoritative discourse that stands in opposition to
medical authority. The strength of culture as an authoritative discourse is most visible in
Spurlock’s character. Unlike Jordan, this Harvard-educated man is difficult to discount
as ignorant or stupid, thereby making it difficult to ignore completely the ideas he
presents. Within the context of the 30 Rock parody, where the representative of medical
authority (the doctor) does little to inspire confidence, claims to authoritative knowledge
lie open to joking criticism. Most often, though, when culture enters the discursive
terrain as an authoritative discourse, it is framed as an obstacle to more “legitimate,”
institutional discourses; thus the authority of culture is framed as a danger that must be
destabilized.
As health practitioners give increasing attention to the importance of cultural
engagement, folklorists and anthropologists have offered their own critiques of the
4 assumptions underlying this move in health-related fields, including the ideas that 1) culture is an obstacle to effective health care and education; 2) culture inherently
connotes minority difference; 3) culture is an essentialized, bounded object (thus ignoring intracultural variation and the embodiment of multiple identities); and 4) medical knowledge is acultural and objective (Borovoy and Hine 2008; Ferzacca 2000; Fox 2005;
Guarnaccia 1996; Hufford 1994; Jones 2007; Kleinman and Benson 2006; O’Connor
1995; Santiago-Irizarry 1996; Shaw 2005). These critiques can inform our understanding of the self-conscious recognition of culture in the institutional domains below.
Numerous studies and syntheses of studies point to the importance of culturally relevant interventions in diabetes self-management programs (e.g., Millan-Ferro and
Caballero 2007), and on its website, the American Diabetes Association (ADA) highlights the importance of culturally appropriate educational materials and community- based programs and activities. In the domains of public health and diabetes nutrition education, much attention has been given to cultural influences on food choices, particularly focusing on groups who have the highest risk for getting the disease. In
Clinical Diabetes, a publication of the American Diabetes Association for clinicians,
Karmeen Kulkarni (2004) offers a review of nutrition-related cultural variation among three ethnic populations: African Americans, Asian Indians, and Mexican Americans.
She asserts the importance of asking patients about their specific food habits in order to
offer the most effective culturally appropriate advice for modifying traditional eating
habits, and she offers examples of typical and modified meals for patients from each of
these three ethnic groups. In one table in her article, for example, she presents the
following as representative of a typical lunch for African Americans: 1 fried chicken leg
5 quarter, ½ cup mashed potatoes, ½ cup green beans seasoned with ham, 1 medium
tomato, 1 hot roll, 1 Tsbp. margarine, ½ cup blackberry cobbler, iced tea with lemon and
sugar. She also offers a modified version of this meal: 1 skinless baked chicken quarter,
green beans seasoned with fat-free low-sodium broth, 1 tsp. margarine, 1 ¼ cup
strawberries with sugar substitute, iced tea with lemon and sugar substitute.
This attention to culture, in reference to attributes and habits of marked racial or
ethnic groups, is also prominent in the domains of health care and education more
broadly.4 Practitioners in these fields recognize that biomedical understandings and
scientifically-based risk assessments of the disease are not the primary factors informing
individual health choices. Cultural competency has now become a standard part of the
curriculum for most health professions, and researchers in the growing field of health
literacy directly address the importance of focusing on cultural understandings of health
and illness in both clinical and public health settings (Pleasant and Kuruvilla 2008;
Zarcadoolas et al. 2006). “Healthy People 2010: Understanding and Improving Health”
as well as the Institute of Medicine’s 2004 report “Health Literacy: A Prescription to
End Confusion” define health literacy as “ the degree to which individuals have the
capacity to obtain, process, and understand basic health information and services needed
to make appropriate health decisions.” While studies have shown that poor functional
literacy (which includes reading, writing, and numeracy) poses a barrier to health
education efforts (Williams et al. 1998), health literacy scholars have increasingly
expanded their focus beyond just functional literacy in determining how people access
4 See Gershon and Taylor (2008) for a discussion of how “culture” is addressed in other institutions that construct themselves as modern, universal, and acultural.
6 and make use of health information (Nutbeam 2000; Baker 2006), and culture has become the focus of some of these efforts. Zarcadoolas et al. (2005), for example, have introduced a model of health literacy which includes cultural literacy.5
Angela Jenks critically examines the development of “cultural competence” as a key method for bridging the gap between “the cultures of patients and the culture of biomedicine” (2009:16). While the move toward cultural competence is meant to disrupt the hierarchies structuring the practices of biomedicine, Jenks argues “that the use of
‘culture’ in cultural competence work can have the unintended consequence of reinforcing, rather than challenging, dominant hierarchies in the United States” (2009:10) by decontextualizing difference so that it can be managed by biomedicine without any acknowledgment of the structural inequalities shaping health disparities in America.6
Jenks bases her argument on the idea that culture “has always been mediated by the political milieu in which it emerges” (2009:31). Rather than existing as a neutral, objective category, the content and meaning of the label culture has political implications, particularly as it becomes a primary means for talking about difference.
Her attention to discursive constructions of culture resonates with other anthropologists’ explorations of the essentialist meanings this concept takes on when it enters into public discourse (Grillo 2003). Given that the concept of culture now exists
5 They describe the domain of cultural literacy as follows: Cultural literacy refers to the ability to recognize and use collective beliefs, customs, world-view and social identity in order to interpret and act on health information. This domain includes a recognition and skill on the communicator’s part to frame health information to accommodate powerful cultural understandings of health information, science and individual and collective action. (Zarcadoolas et al. 2005: 197)
6 See also Breidenbach and Nyíri for a brief overview of the emergence of “cultural competence” in health care as well as the criticism it has received (2009:305-315).
7 “just about everywhere” (Hannerz 1999:393), not just in scholarly conversations among
intellectuals, Ulf Hannerz urges anthropologists to turn their attention to the assumptions underlying its use in public life, particularly in contexts of conflict. Asserting that
“culture is loose on the streets” (1999:57), Unni Wikan takes a stronger stance on the dangers of the concept, claiming that it has replaced racism in creating and reinforcing distinctions between “us” and “them.” In my own analysis below of the cultural framings of diabetes, I am following the lead of Virginia Dominguez, who has identified the “need to move away from asking about culture…and toward asking what is being accomplished socially, politically, discursively when the concept of culture is invoked to describe, analyze, argue, justify, and theorize” (1992:21). Thus, I approach culture not as a definable body of data but as a powerful discursive resource.
To do so, I draw upon the concept of culturespeak, first introduced by Ulf
Hannerz to refer broadly to the constructions of “culture” in public discourse. Hannerz introduces several different types of culturespeak, including cultural fundamentalism, multiculturalism, cultural celebrationism, and culture shock. What I find most useful about culturespeak for the purposes of the present study is not how these specific types emerge in discourses about diabetes, though I have encountered each of these types during the course of my research. Rather, as noted by Michael Goldsmith (2003:281), culturespeak offers a useful heuristic device for looking at the multiple ways people talk about the amorphous concept of culture. By calling attention to its multiple manifestations, culturespeak does not let us look at culture as an essential thing (even as it is presented in essentialist terms). It reminds us that culture is constructed at the same time it is invoked. In the following sections, I will first present and analyze examples of
8 culturespeak in media representations of the disease. I will then highlight different
framings of culture within contexts of health education, before I introduce the research questions I address throughout the rest of the dissertation.
“Bad Blood”
The emergence of the term “diabesity” (Kauffman 2005) makes strikingly visible the discursive intertwining of diabetes and obesity. It is worthwhile, then, to begin by observing the parallels emerging in the representations of these two conditions. In her analysis of media representations of the “obesity epidemic” in the New York Times,
Natalie Boero (2007) reveals how a constructed opposition between nature and culture provides a central structure for these representations. She identifies how the articles covering the obesity epidemic embody two meanings of the term “culture”: a general critique of “American” cultures and the dangers of “ethnic” cultures (particularly African
American and Mexican-American cultures). The critique of American culture, according to Boero, highlights the prevalence of video games, fast food, television, lack of physical activity, and “super-size” portions. We see this generally negative view of American culture in New York Times writer Marc Santora’s 2006 article, “East Meets West, Adding
Pounds and Peril,” where the author uses the metaphor of colliding cultures to explain the rising rates of diabetes among East Asian immigrants in New York.
We also see ethnic cultures framed as dangerous to health in media representations of diabetes. While there are several overlaps in the discursive constructions of culture in relation to diabetes and obesity, though, diabetes is marked by
9 a powerfully symbolic difference: contamination or, drawing on the title of a series of
articles about Type 2 diabetes published in the New York Times, “Bad Blood.”7 The
contamination metaphor, already studied extensively in relation to other diseases, lends a
powerful force to the devaluing of difference through the discursive mechanism of
culture. I turn briefly now to scholarly work on other epidemics where the contamination
metaphor features prominently, specifically HIV/AIDS and cholera, to point to broader
patterns whereby cultural features are linked to notions of biomedical causation (Briggs,
2005:276).
In her studies of HIV and AIDS, Paula Treichler (1999) uses the term “epidemic
of signification” to highlight how discursive framings of the disease work to reinscribe
social hierarchies by maintaining naturalized categories of difference based on race,
class, sexual orientation, and gender. Susan Sontag addresses similar issues when she
writes about AIDS, describing how “AIDS is understood in a pre-modern way, as a
disease incurred by people both as individuals and as members of a ‘risk group’—that
neutral-sounding, bureaucratic category which also revives the archaic idea of a tainted
community that illness has judged” (Sontag 1989:46).8 Within this framing, the
community is tainted, not just the individual.
In its public representations, HIV/AIDS became a “natural” accompaniment to
“deviant” behavior, though this underlying idea was articulated differently for different
“at-risk” groups. For homosexuals, for example, HIV/AIDS signified a punishment for
immoral behavior. For people from Africa, though, intentional immorality was not
7 In January 2006, The New York Times published the “Bad Blood: Diabetes in New York” series, a collection of articles and multimedia about the growing rates of the disease in New York.
8 See also Farmer (1992) 10 necessarily constructed as the central issue. Diane Goldstein, in her study of HIV/AIDS and the social construction of risk, shows how articles in medical research journals
(whose ideas then make their way into such forms of popular media as Cosmopolitan magazine), in discussing African “high risk activities,” “use ethnographic information to foreground aspects of traditional culture, emphasizing the failure of Africans to adjust to
the conditions of Western civilization…Heavily stereotyped and abstracted from social,
historical, or cultural context, these studies condemn traditional culture through an
emphasis on the risks intrinsic [to it]” (2001:131). For example, she examines how one
article in a medical journal attributes the high rates of AIDS among certain African tribes
to the use of non-sterile instruments in scarification rituals. Another medical researcher
claims that monkey blood is commonly used for stimulation in African sexual practices,
which may account for the origin of the disease in humans (drawing upon an
ethnographic account from 1927 and presenting his description as current practice).
Goldstein notes that the authority accompanying this use of ethnographic information
reinforces stereotypical notions of Africa as foreign and the inherent deviance of those
diagnosed with AIDS, so that discourses of blame remain unquestionably on the victims.
While this framing is based on the same basic idea that has naturalized HIV/AIDS in the
homosexual body (deviant behavior leads to disease), it is not framed within discourses
of morality. Individuals are not making poor choices. Rather, Africans are so over-
determined by their “traditional culture” that their behavior is inherently deviant. They
are not acting as individuals but as part of a group, a “pre-modern group” to be more
specific. Thus, whether naturalizing the link between the disease and immorality or the
11 disease and pre-modernity, the models for understanding HIV/AIDS map onto pre-
existing discourses of “otherness.”9
Charles Briggs and Clara Mantini-Briggs provide another striking example of
how images of disease can reinforce social hierarchies in their book Stories in the Time of
Cholera: Racial Profiling during a Medical Nightmare. Here, Briggs and Briggs-
Mantini paint a frightening picture of the social inequality that led to the labeling of the indígenas as “natural” carriers of disease during the 1990s cholera epidemic in
Venezuela. One of the authors’ major claims is that “Emerging and ‘re-emerging’ diseases are tied to anxieties that deadly germs are passing from Asian, African, and
Latin American bodies and environments into white bodies, anxieties that are exacerbated
by talk of immigration and population increase” (Briggs and Mantini-Briggs 2003:6).
With such an assertion, they situate the disease within pre-existing discourses of social
difference. While the authors acknowledge that several narratives circulated in
Venezuela about the disproportionate incidence of cholera among the poor indígenas
(including those based on the idea that modernity inherently leads to social inequality,
creating “expendable” populations without access to health care and resources), the narrative that gained the most salience through the discourses of public health officials
and then circulated in the media was that “cultural beliefs and practices transformed
individual bodies into natural bearers of disease” (Briggs and Mantini-Briggs 2003:9).
Within this model of understanding, the epidemic in Venezuela originated and spread
9 Of course, beyond the discourses surrounding homosexuality and Africans, I have not addressed the variety of ways in which different groups come to be recognized as being “at-risk” for AIDS. See Diane Goldstein’s Once Upon a Virus: AIDS Legends and Vernacular Risk Perception for a more in-depth discussion of AIDS and social categorizations.
12 primarily among the indígenas because of their supposed cultural traditions of eating raw
crab. While this theory was proven to be false, the idea that members of this population
ignored the risk of disease and lived in filthy, un-hygienic conditions grew stronger. This
idea, then, built “an image of people who are not only disgusting but willfully so—they
just don’t care. The lack of funds to purchase soap or toilet paper and the failure of
institutions to provide potable water or to conduct extensive health education programs
are washed away by this river of negative images” (Briggs and Mantini-Briggs
2003:207). Situating the indígenas outside the realm of sanitary citizenship, the negative
images also work to support the idea that this population is not worthy of governmental
help.10
A non-infectious disease, diabetes differs significantly from diseases like
HIV/AIDS and cholera. At the same time, some news reports of medical research have begun comparing social behaviors to viruses, proposing that health conditions associated with unhealthy behaviors, such as obesity and diabetes, are in fact contagious (Kolata
2007; Thompson 2009). Through the discursive intertwining of culture and contagion in representations of diabesity, we see significant similarities with representations of the epidemics described above.
10According to Briggs and Briggs-Mantini, “Sanitary citizenship is one of the key mechanisms for deciding who is accorded substantive access to the civil and social rights of citizenship” (Briggs and Mantini-Briggs 2003:10, emphasis in original). Briggs also discusses sanitary citizenship in his 2003 article, “Why Nation- States Can’ t Teach People to be Healthy: Power and Pragmatic Miscalculation in Public Discourses on Health,” where he describes sanitary citizens as “individuals who (1) conceive of the body, health, and disease in terms of medical epistemologies; (2) adopt hygienic practices for disciplining their own bodies and interacting with others; (3) and recognize the monopoly of the medical profession in defining modes of disease prevention and treatment. Other individuals became what I refer to as unsanitary subjects—persons who were expected to have failed to internalize medicalized epistemologies, bodily practices, and deferral to health professionals” (2003:288). See also Rosenberg (1962). 13 Staging Culture and Choice in Media Accounts
Let us look now at public examples of culturespeak in relation to diabetes, specifically three news articles from the New York Times about diabetes, all published over the course of one year (2006) but each featuring the disease in relation to a different population. In the first section above, I introduced how the responsibility for diabetes is commonly situated in two domains: individual choice and culture. In the three following examples, I will look closely at the discursive interactions between these two domains.
In his article “Medicaid Plan Prods Patients Toward Health,” New York Times writer Erik Eckholm describes a pilot program in West Virginia which aims to reward people on Medicaid with “enhanced benefits” if they sign a pledge “to do my best to stay healthy” and attend health improvement programs (for weight loss and anti-smoking).
The purpose of this incentive program is to reward “responsible” behavior. Those who do not sign the pledge will have their health benefits restricted significantly. Those who do sign it will receive additional benefits.
The first thing the reader encounters is a picture of a white man sitting in an easy chair, smoking a cigarette, and looking not at the camera but off to the side. On the table next to him lies an ashtray filled with cigarette butts. The caption below this picture reads, “John Johnson has lost a leg to diabetes but eats ‘what I want’ and continues smoking. He says he will not participate in the enhanced-benefit plan.”
The article begins with the sentence, “No question, John Johnson is a doctor’s nightmare.” Eckholm then goes on to describe Mr. Johnson in more detail, framing him as the representative target of the incentive program: “Speaking from the easy chair
14 where he spends his days in a small wooden house near this small Appalachian town, his
left trouser leg folded by a safety pin where a limb was lost to diabetes, he lighted another
cigarette.” From this brief description, the reader understands that Mr. Johnson is 1) not
working since he spends his days sitting in an easy chair at home, and 2) not healthy, since he smokes and has already suffered complications from diabetes. The description of Mr. Johnson continues: While “taxpayers foot the bill” of his medical treatments, he has no intention of quitting smoking: “’I’ve been smoking for 50 years — why should I stop now?’ he added for good measure. ‘This is supposed to be a free world.’” In reference to his diabetes, he says, “I told [my doctors] I eat what I want to eat and the hell with them.” Situating his purported lack of control (Broom and Whittaker 2004) within his invocation of freedom, the article presents Mr. Johnson as a man who has failed to
manage his responsibilities for his health. Such a failure at the individual level affects
him negatively, as well as the taxpayers who have to pay for his indiscretions. Individual
health choices become intertwined with morality and social responsibility (or its lack).
Coupled with smoking, Mr. Johnson’s diabetes is constructed as a marker of a “spoiled
identity,” where his amputated limb makes visible his “blemishes of individual
character,” in the words of Erving Goffman (1963:4).11
At the same time, the article connects Johnson’s poor lifestyle choices to another
type of stigma identified by Goffman: “the tribal stigma of race, nation, and religion”
(1963:4), where the contaminating “attribute” extends beyond the individual to all
members of a group, in this case those individuals who are part of Appalachian culture.
11 See also Brandt and Rozin (1997) for a variety of case studies that explore the relationship between health and morality.
15 For example, Nancy Atkins, the state commissioner of medical services offers culture as
an explanation for why West Virginia has such high rates of obesity, smoking, heart disease, and diabetes when she says, “We’re in an Appalachian culture where there’s a fatalism, and many people don’t go in for checkups or preventive services.” Explaining individual choice in terms of cultural fatalism, Atkins, and by extension Eckholm, constructs culture as a significant source of health problems.
Eckholm does acknowledge briefly the poverty in the area, noting that some people cannot afford the transportation to go to the heath programs, and writing that “[n]o one questions that West Virginia, more than most other states, needs more healthful lifestyles and better primary and preventive care.” His focus on Mr. Johnson, “the cantankerous diabetic,” however, diverts attention away from the material conditions affecting health care, focusing instead on how this man, and presumably the others whom he represents, refuses to take advantage of the resources available.
The second article in the “Bad Blood” series, written by N. R. Kleinfield, is entitled “Living at an Epicenter of Diabetes, Defiance and Despair.” This article,
focusing on high incidence of diabetes in East Harlem (whose population is 90% African
American and Hispanic), paints a picture of a population so over-determined by poverty
that individuals are not able to make healthy choices to avoid diabetes and its complications. Kleinfield highlights 96th Street, separating the Upper East Side and East
Harlem, as “the tangible southern divide of a neighborhood and of a disease” (Kleinfield
2006). With this description, diabetes maps quite literally onto the geography of the city,
where the rich and the poor are clearly divided. The rich stand on one side of the divide;
the poor stand on the other. People on one side have access to healthy foods; people on
16 the other do not and are overrun with fast food restaurants. People on one side are thin; people on the other are overweight. Finally, people on one side are healthy; people on the other have, or most likely soon will have, diabetes. In describing both the socioeconomic and health differences on both sides of the divide, the author presents diabetes as dividing the residents of each area as clearly as 96th Street does. At the same time, he traces back the significantly different rates of diabetes on each side of this divide to socioeconomic status.
What is most striking about the portrayal of diabetics and those at-risk for diabetes in the area is that they are not willfully being unhealthy. Rather, they have no choice. The title of the article, “Living at an Epicenter of Diabetes, Defiance and
Despair,” begins to paint a picture of this lack of agency, invoking the metaphor of the epicenter of an earthquake, a source of devastation outside the control of individuals who are ultimately at its mercy. Kleinfield reinforces this lack of agency with other imagery in which the residents of East Harlem are acted upon by their circumstances: He describes East Harlem as “a gritty neighborhood where problems back up on people like fallen dominoes.” Elsie Matos, a resident of East Harlem, is “burdened with the disease,” as “She had difficulty satisfying the disease’s persistent needs.”
Kleinfield also points out the definitively poor choices some residents make. For example, he presents the following words of East Harlem resident Juan Conception as he describes his father, who died of diabetes: “He kept taking sugar…He kept drinking beer.
He was a stubborn guy. They cut one leg at the ankle. Then they took the other above the knee.” Most of the people interviewed, though, showed a genuine desire to adopt
17 healthier habits, such as losing weight and quitting smoking. Unfortunately, external forces created obstacles that were too difficult to surpass:
• “’Listen, if I want to eat a piece of cake, I’m going to eat it,’ [Elsie Matos]
said. No doctor can tell me what to eat. I’m going to eat it, because I’m
hungry. We got too much to worry about. We got to worry about the rent.
We got to worry about our jobs. I’m not going to worry about a piece of
cake.”
• “…diabetes has too much to master at the individual level in a world that had
become so hospitable to it.”
• In the words of community resident Juan Conception: “Everything about
this neighborhood, the pollution in the air, it all makes you sick. Don’t get
me wrong, we love this place, we love Spanish Harlem. But it does stuff
to us. Now it’s giving us all diabetes.”
• In the words of community resident Maria Calderon: “How can you worry
about your health when you don’t know where you’re going to live next
week?”
It becomes clear throughout the article that good intentions are useless in the face of the powerful force of socioeconomic circumstances.
Kleinfield points also to “cultural” factors constraining individual choices. For example, after describing how residents of East Harlem lack access to fresh produce in neighborhood stores, Kleinfield writes:
18 Why not stop with the doughnuts and fried calories and eat salads, drink diet
soda? James De La Vega laughed. “We’ve got cultural differences,” he said.
“Here, for a guy to eat a salad, he’s a wimp. He’ll eat a big portion of rice and
beans and chicken. The women can’t be chumps, either. A woman can eat a salad
but has to eat it on the low. She has to do it quiet. They make fun of you: “What
are you, a rabbit?”
Culture, described here in terms of gender expectations and an ethos of toughness, enters
the picture as an obstacle to healthy eating, an obstacle just as significant as the economic
factors highlighted in the rest of the article.
Finally, N. R. Kleinfield’s article, “Modern Ways Open India’s Doors to
Diabetes,” focuses on the alarming rates of diabetes in India. Diabetics in this article find
themselves overwhelmed by factors beyond their control, specifically an overpowering
wave of modernity. Kleinfield firmly identifies diabetes as inextricably connected to
“progress,” beginning his article with the claim that “Type 2 diabetes is engulfing India,
swallowing up the legs and jewels of those comfortable enough to put on weight in a
country better known for famine.” Juxtaposing the abundance of modernization with
famine, this type of imagery immediately presents the idea, one that is supported throughout the rest of the article, that even though many in India have managed to escape
the problems of poverty and now have the freedom of choice, they cannot handle the
freedom to make healthy choices amidst the newfound abundance.
19 According to Indian Dr. A. Ramachandran, as quoted by Kleinfield, “Diabetes
unfortunately is the price you pay for progress,” and diabetes is clearly coupled with
modernization and Westernization throughout the article:
• “For decades, Type 2 diabetes has been the ‘rich man’s burden,’ a problem
for industrialized countries to solve.”
• “Now Westernization has come to India and is bringing the disease
home.”
• “Westernization sweeps its way to the villages, carrying diabetes as its
passenger.”
• “…industrialized and Western food habits have taken hold”
All four quotes above frame Westernization as a force acting upon India, “coming to
India,” “bringing the disease,” “sweeping” into villages, “carrying diabetes,” and “taking
hold” in the form of changing food habits. In framing Westernization as an invading
force, the author portrays India as a passive recipient of the changes carried by these
outside forces. In fact, as more people make money and eat well, this article identifies
diabetes as a kind of marker of success: “In India, the disease tends to directly track
income,” providing what people see as a marker of status. People in India may have the
material means to make healthy food choices, but most who are able to do not. Thus, as
“India hurtles into the present, modernizing and urbanizing at blinding speed,” not enough people are making the right choices to counteract the physical damage such modernization can bring.
Kleinfield, in trying to explain the reason for the large numbers of diabetics in
India, writes: “Too much food has pernicious implications for people with a genetic 20 susceptibility to diabetes.” It is worth noting here that other populations are similarly
framed within this model of understanding the disease. One key example is the
widespread belief in the “thrifty” gene hypothesis, which purports that Native Americans,
another population afflicted with increasing rates of diabetes, are genetically predisposed
to store fat in their bodies when food is abundant in order to prevent starvation in times of
famine. Now that members of such populations do not face the imminent threat of
starvation, their bodies have failed to adapt to modern civilization, making them more
susceptible to conditions such as obesity and diabetes. Such a “thrify” gene has never
been found, but its existence has been “verified” by anthropological knowledge about the
differences between the Native American lifestyle before and after the colonial
encounter. In addition to framing diabetes as an unavoidable outcome for Native
Americans (blocking even the potential for diabetes prevention), the “thrifty” gene
hypothesis places the cause of diabetes within the individual but outside the individual’s
control, ultimately highlighting the failure of the certain populations to evolve properly.12
Kleinfield also emphasizes this “failure to adapt” through a focus on “cultural traditions” standing in the way of effective treatment and prevention. For example, he notes that “[t]he country boasts a ravenous sweet tooth, hence the ubiquitous sweet shops, where customers eagerly lap up laddu and badam pista rolls. Sweets are obligatory at social occasions – birthdays, office parties, mourning observances for the dead—and during any visit to someone’s home, a signal of how welcome the visitors are and that
12 For different anthropological perspectives on the “thrifty” gene hypthesis, see Jennie R. Joe and Robert S. Young’s Diabetes as a Disease of Civilization: The Impact of Culture Change on Indigenous Peoples (where the hypothesis remains unquestioned) and Mariana Leal Ferreira and Gretchen Chesley Lang’s Indigenous Peoples and Diabetes: Community Empowerment and Wellness (where the hypothesis is strongly contested).
21 God is present.” This calling attention to the “obligatory” presence of sweets during social customs is very significant, especially when read through the lens of what Emily
Martin calls “a new incarnation of Social Darwinism” (1994:229). Martin describes how, beginning in the 1960s, as more was learned about the immune system, common views of the primary reason for the diseased body shifted from an infection threatening a passive body to a general weakness of the body’s defenses. Presenting the body as an interconnected system, according to Martin, “this framework resides entirely within the body, where it links the body to its changing environment” (1994:37). The body’s ability to be flexible ultimately determines whether or not a disease exists within it. Martin puts this emerging health model, where the body is “trained and mobilized” (1994:38) to fight infection through exposure to vaccines, for example, next to emerging management theories about organizations. She notes that in this latter realm, people rarely do only one job their whole life; they are expected to put their training to use and to be flexible to whatever situation may arise.
Putting common ideas of the healthy body next to common ideas about good workers who are well-educated and willing to adapt, she writes:
a variety of domains (concepts of health, the body, survival) conspire together to
bring to the foreground particular contemporary notions of training and
education, notions that draw on the specifically American connection between
education and liberal democracy. These notions are as powerful for what they
evoke about the equal potential of all humans to learn as for what they conceal.
As we will see, what they conceal is that, for lack of resources, not everyone can
obtain the same quality or amount of training or education; what they also conceal
22 is that, even given ample education and training, the task that must be learned (the
ability to adapt to constant change) is such that some will inevitably fail or refuse
to learn. (1994:15-16)
In the case Kleinfeld describes, it is not the immune system that is failing to adapt to a
changing environment, but an entire cultural system. The same idea extends beyond the
realm of food choices. For example, while doctors recommend against going barefoot due
to the higher risk of infection due to high blood sugar levels that could ultimately result in amputations, “the culture demands precisely the opposite” (emphasis added). More specifically, “The difficulty is that bare feet prevail [in India]. People shuck their shoes before funneling into homes, some offices and always the temple. Farmers go barefoot in the country. In the cities, autorickshaw operators thunder through town, flesh pressed against hot pedals.” Even in terms of getting effective treatment: “Much of the population gravitates to cryptic beliefs threaded with untruths that are hard to nullify.” A strong distinction is made here between Western biomedicine and alternative health belief systems, where the former is useful and the latter is not. Western biomedicine can help, though, only if people choose to take advantage of it. Thus, people in India, pre- modern in some ways and Westernized in others, are too over-determined by their native culture. Their poor health results from a failure to adapt their behavior to the environment accompanying Westernization and modernity. In categorizing Indian people on the boundary between modernity and pre-modernity, the images and ideas about disease emerging in this article reinforce a difference from Western culture that is framed as detrimental to the Indian person’s very well-being. Also, applying Martin’s discussion of flexibility to diabetes within the larger narrative of Western progress reveals the
23 embedded assumptions within the narrative that some will keep up with the change and
others will not.
In each of these examples from the New York Times, the cultural scene plays very
influential roles in shaping the act of engaging in unhealthy behaviors. Interestingly, presentations of culture in relation to individual choice resonate with similar framings of culture in other domains.
Political theorist Samuel Huntington, for example, in his article, “The Hispanic
Challenge,” presents Latino immigrants as a threat to American civilization due to the incompatibility of Hispanic culture and “the Anglo-Protestant values that built the
American dream” (2004:30).13 Similar themes emerge in David Brooks’ explanation of why the 2010 earthquake in Haiti was so devastating:
Haiti, like most of the world’s poorest nations, suffers from a complex web of
progress-resistant cultural influences. There is the influence of the voodoo
religion, which spreads the message that life is capricious and planning futile.
There are high levels of social mistrust. Responsibility is often not internalized.
Child-rearing practices often involve neglect in the early years and harsh
retribution when kids hit 9 or 10. (2010)
These framings of culture that conflate economic circumstances with cultural attitudes,
values, and practices, lend credence to Wikan’s criticism of public uses of culture:
13 In their analysis of how one white middle-class woman describes the difference between her family background with that of her Hispanic, working-class husband, Gaudio and Bialostok show the pervasiveness of such discourses about cultural difference as “dysfunctional, maladaptive, or simply inferior to those of the dominant White Anglo middle classes” (2005:62).
24 …it functions in a reductionist manner to make ‘them’ lesser human beings than
‘us’. Whereas ‘we’ regard ourselves as thinking, reasoning, acting human beings
with the ability to reflect and respond to changing circumstance, ‘they’ are
portrayed as caught in the web of culture and propelled to do as culture bids.
(1999:58)
Public uses of culture effectively work to solidify differences between “us” and “them.”
In this section, I have sought to illuminate the potential dangers of drawing upon culture as a discursive resource. I do not intend, however, to advocate for the eradication of the concept of “culture” from the discourse surrounding diabetes. In contexts of health education, pointing to cultural factors influencing the disease and its management has the potential to uncover a kind of self-awareness that can help people become healthier.
Consider the story of Dan Pham, a thirty-nine year old civil engineer from Fort
Lauderdale featured in the New York Times “Patient Voices” series who was diagnosed with diabetes after what he describes as “a pretty large weight gain.” In his story, he attributes his weight gain, and thus his diabetes, to cultural factors:
My family was from Vietnam, and you know one grain of rice was worth its
weight in gold, so the encouragement of, of growing up was always to finish your
plate. The nutrition class showed me that what I was used to eating you know
there was such a disparity between the amounts between what I really needed to
eat – small habit changes make, make ripple effects. I can go to a restaurant and
not eat the whole plate and be more social at dinner. If I had realized that would
have made a big difference I would have done that many many years ago…
25 In this case, his awareness of how his eating habits had been shaped by his cultural background led him to make healthier lifestyle choices, which ultimately caused him to lose thirty pounds and bring his blood sugar under control. As he identifies his family background as a contributing factor to his health condition, he situates himself as now outside the domain of its influence.
Indeed, any claim to culture in relation to diabetes, I would argue, works to identify an individual’s relationship to the culture in which he/she finds him/herself.
Through the examples I have provided so far, references to culture and diabetes allow for two roles that individuals can occupy in the unfolding narrative of their disease: passive victims subsumed by their culture or active agents able to distance themselves from the dangers embedded in their culture. Pham’s success story, presented in his own words, situates him in the latter of these two roles; at the same time, it also reveals the ambiguous role references to “culture” can play in ongoing discussions about diabetes, in that cultural framings of diabetes have the potential both to reinforce stereotypical notions of difference and to empower individuals with a kind of self-awareness that can contribute to longer, healthier lives.
If we do not want to throw the baby out with the bath water, then we must ask ourselves: How can the concept of culture be put to use most effectively in contexts of health education? To begin addressing this question, I argue, we need to attend to the differences between vernacular perspectives and their institutional reifications. I begin this process below, presenting three types of discursive engagement with African
American culture, specifically “soul food,” in relation to diabetes.
26 Alternate Framings of “Soul Food”
The term “soul food” emerged in the 1960s as part of the self-defining discourse
of African Americans. Associated with the creative processes of slaves who had to “make
do” with the limited foods they had available, it became both a symbol for a shared
history of oppression and of cultural pride (Baraka [Jones] 1962; Henderson 2007; Liburd
2003; Poe 2002; Van Deburg 1992; Witt 1999). William Whit (2007) describes soul
food as a cultural creation, pointing to how its form and meaning are constantly adapting
to changing environments and individual creativity. At the same time, though, soul food’s
connection to the shared history of African Americans has made it a powerful discursive
resource for talking about the experiences of African Americans as a whole.14
Scholars of African American literature and culture have pointed to the powerful
symbolism of food in articulations of self (Warnes 2004; Ford-Wilson 2006; Witt 1999).
In the process, they have shown how markers of “cultural intimacy” (Herzfeld 1997), a form of social bonding over shared traits that are experienced as stigmatized, have moved from in-group social contexts to public and institutional statements.15 For example,
Laretta Henderson, in her analysis of food imagery in the magazine Ebony Jr!, examines how the editors of this publication put soul food to use: “In an attempt to address the
14 Tony L. Whitehead communicates a similar idea when he writes: “Just as ethnic or regional identity (that is, being southern or African American) is a cognitive construct, so too is ethnic foodway [sic] a symbolism, a state of mind…African American foodways are African American because African Americans recognize them to be so” (1992: 99).
15 Michael Herzfeld discusses the concept of cultural intimacy in context of the nation-state, looking at how essentializing is not just a state activity. People engage in similar essentializing practices in reference to themselves, and, according to Herzfeld, “The point is less that they resist the elite – a dubious proposition – than that they recognize the self-reproducing lineaments of their common, embodied experience. This is how they acquire a sense of a collective, embodied self” (1997:138).
27 accusations that they were "acting white," the black middle class used their professed
consumption of soul food to align themselves with the black lower class and their ethnic
identity” (2007:94). She argues that the editors included foods in the magazine that were marked as “African American” – watermelon, red beans and rice, cornbread, baked neckbones, peach cobbler, and greens – not because these were the foods that black
middle class children were eating but rather because they were symbols of ethnic identity.
Similar moves of strategic reduction, where specific foods become markers of
ethnic identity, emerge in healthy living initiatives led by and resources produced by
African American professionals, who draw on this habit of transforming soul food from a
badge of cultural intimacy to a more public representation of culture. For example, in
their cookbook The Family Style Soul Food Diabetes Cookbook (2006), African
American dieticians Roniece Weaver, Rojean Williams, and Fabiola Gaines, with chef
Shawn Fralin, seek to provide culturally appropriate dietary recommendations for African
Americans with diabetes. The cover features a photograph of the authors standing
together, smiling, and holding food ready to serve. The symbol for the American
Diabetes Association sits in the top right corner, and the following sentence lies across
the bottom: “Bring soul food and healthy eating together in your family’s kitchen.” In
the introduction, under the subheading “Soul Food – Reinvented for Today’s Family,” the
authors provide a brief history of soul food, explaining how it originated during slavery
and has since become both an ethnic (prepared and eaten by African Americans), and
regional (southern) cuisine. They write: “Over the years, it has become apparent to us
that there is a need to evaluate the nutritional content of soul food and to find exciting
ways to improve its nutritional value while maintaining culture and tradition. We have
28 found that it can be done” (2006:1). In this sentence, we see a distinction being made between healthy eating and “culture and tradition.” Indeed, this book, with its focus on
“nutrition,” is framed as a mechanism of intervention into the unhealthy elements of
“culture and tradition.” This distinction is further highlighted when the authors explain:
These recipes are designed to bring out the very best of soul food cooking. This
means elevating the ingredients, cooking methods, and presentation of these
dishes to bring the best in healthy flavors to your table. You’ll have to break
away from the traditional ways of thinking how soul food should look, smell, and
– most importantly – taste. (2006:34)
The authors follow the same concept of recipe modification as described in the first section above, though in this case “traditional ways of thinking” are explicitly framed as the agency by which unhealthy food choices have been made in the past. Healthy eating, as articulated here, involves “breaking away” from these traditional ways of knowing.
One of the striking features of this cookbook is how, despite the opposition the authors draw between culture and healthy eating, they also insert signifiers of culture throughout the text to lend a sense of legitimacy to the adapted soul food recipes. The cookbook is divided into conventional sections, each representing a different category of food: Breads, Vegetables, Meats, Snacks, For Kids, and Desserts. It also includes one
more category of foods that is not typically found in “standard” cookbooks: Church
Recipes, which feed up to forty people. Within these sections, the titles of the recipes
refer to specific people: e.g., Roberta’s Buttered Sweet Potato Knot Rolls, Candace’s
Sweet Biscuits, Carolyn’s Texas-Style Corn Bread Dressing, Dan the Man’s Pork
Tenderloin, Derek’s Catfish Fry, Ernestine’s Beef Pie, Eunice’s Bourbon Cornish Hens,
29 Jay’s Chicken Chili, Jeanette’s Praline Chicken, Deacon Board’s Chicken, Deaconess’s
Salad, ‘Nana Pudding for Everyone, Pastor’s Dressing, Pastor’s Oven-Baked Chicken,
Sistah Addie Mae’s Stew Beef, Sistah Mabel’s Macaroni and Cheese, Soul Sistah Slaw.
The reader is not given any specific information about these people who are referenced,
but the personalization of the recipes and the relational networks they imply work to draw
connections between this book and the genre of community cookbooks.16 It is written as
if the reader knows Eunice and Dan the Man and is already familiar with their dishes, as
if the reader is part of the same community as the authors. This idea of familiarity and
community is also reinforced through the inclusion of vernacular speech, as exemplified by the recipes called “Taters” and “Trash-Talkin’ Grilled Tofu Steaks.” Although grilled tofu steaks may not traditionally be thought of as soul food, the authors are seeking to reinsert them into this category by framing the recipe with vernacular speech. The authors, at the level of discourse, simultaneously distance the healthy recipes from tradition and culture and reinserting them into the domain of African American culture.
In the process, they present culture and tradition as a constraining but necessary force in the lives of the intended cookbook readers.
In the following examples from my fieldwork, however, we see alternative, and I would argue more nuanced, engagements with culture. First, during a story circle of
16 For more detailed descriptions and examples of how to approach cookbooks analytically, see Bower (1997); Cotter (1997); Kirshenblatt-Gimblett (1990); Leonardi (1989); Zafar (2002); Shigly (2007); Theophano (2002).
30 African Americans with diabetes in Columbus, Ohio,17 after one woman urged people to
start gardening, I listened to a community health educator and activist say to the group:
The diet that we consume, the greens with the fatback? My great-grandfather
lived until he was 94 years old and gardened until he was 91. And he made his
own, wrang the necks of chicken and made his own chicken and dumplings. He
uh did his garden and but his lifestyle, even though he ate things that you know
were high in fat and may have had a lot of sodium, his lifestyle was such that he
was so active that what he ate he burned off. And and so we now we have a
lifestyle where we eat the same food, but we don’t have the same lifestyle where
they stayed active up until they went into the grave and and so now sister is very
much correct so that when you think about our diet, I don’t look at diabetes as a
disease that is pre-destined because we have a genetic history, because genetically
we’re linked to Africa, and Africa doesn’t have a high rate of diabetes, and so and
so this is indeed an issue of when we came to this country, the diet and the food
and the lifestyle is is is dictates our our our disease rather than our genetics,
‘cause our genetics show, I mean you go to Africa, you don’t find in Africa the
rate of diabetes that you find here… really believe this, that every last one of us
in this country need to plant our own gardens, and the reason I say that is if you
taste the food that comes out of your backyard versus the taste of the food that
comes out of the grocery store, there is a, the difference is as night and day. And
17 Coming out of the tradition of Participatory Theatre, a story circle is an organized gathering in which participants defined by some common characteristic share stories. This particular story circle was organized in relation to Robbie McCauley’s performance piece, Sugar, and every participant but me was African American. I describe story circles in greater detail in Chapters 2, 3, and 5.
31 not only does it taste good, but you feel better, but I just think the sister’s right on,
whatever you have to do to prepare your backyard this growing season… Black
folks, we can ill-afford anymore to be ignorant about taking care of ourselves
when we have always known how to do it. We just need to get back to the basics.
Before I look more closely at the different work being accomplished through this
invocation of soul food, consider also the following exchange I observed during a diabetes self-management nutrition education class.
Kathy, the white dietitian teaching the class, shared an example about how to modify a dish so that it would contain less fat. She said, “I make a mean mac & cheese
using 2% cheese and sprinkling sharp cheddar on top.”18 An African American woman sitting next to me shook her head, while another, Barbara, explained that she did not want to change the recipe she uses because it tastes too good and that her friends and family love to eat it when she makes it. She then went on to tell everybody what her recipe called for: Colby, Muenster, Cheddar, whole milk, and a stick of butter. “Only one?” another student in the class jokingly asked. In response, Barbara smiled and said in an exaggerated tone for everybody to hear, “Shhhhh.” Kathy then asked her when she eats this dish, and Barbara explained that she makes it every Thanksgiving. Kathy responded that it is fine not to change dishes like mac & cheese as long as you only eat these foods on special occasions. Janet, another dietitian who happened to be observing the class that day, added: “It is important never give up your culture. You have certain cultural foods that are important to you. And don’t lose that!”
18 Pseudonyms have been given to all research participants, unless they are presenting in public venues. 32 A week later, I referred to this exchange while I was interviewing Kathy about her
teaching philosophy, and she responded:
I do remember the client. I remember where she was sitting. She was saying,
“I’m not going to give up macaroni and cheese,” and I asked her what she put in it
and it was like the worst for you macaroni and cheese I have ever heard of. I
think the only thing she didn’t put in there was cream. But it was whole milk that
she used, whole milk and four different kinds of cheeses that were whole-fat
cheese, you know bad for you cheeses. I think, if I remember, I took the route of
if you can’t possibly change it, then how many times a year do you really eat that?
And how many times are you willing to give it up? And I believe she said that it
was an every-now-and-then, a holiday thing. Those are cultural things that it was
part of her family. It was probably a handed-down recipe. I can’t compete with
that.
I then asked, “Do you have a lot of situations like that, or do people bring up those types of things a lot?”
Kathy replied:
You know, I have to bring it up first, because when, I think that you’re in a
classroom that is representing a lot of different cultures, or even just several
cultures, people know that the minute they walk in the door. And they assume
that my culture is different from yours, is different from theirs. And, I notice that
people will bring it up if they assume that somebody else in the class is of their
same culture. For instance, [one woman] who was in the last class, we were
talking afterwards and she said, I was talking about the foods that she eats and she
33 said, “I don’t eat your food.” And I said, “What’s my food? American food?”
“Yes.” And I’m like, “You don’t know what I eat,” and she looked at me and she
said [whispering] “Do you eat ethnic food? Do you . . .” She was so excited
because she’s a cook. I said, “Yeah. I like Indian, Mexican, and Italian, and I
don’t just eat the American versions of it.” She was really excited to know that.
It also put her a little more at ease. “Okay, this woman may be familiar with
some of the things I eat.” Well, it turned out, she’s Palestinian. She started
talking about some of the foods she eats. I told her I’m very familiar with this. I
used to manage a restaurant called Aladdin’s, which is Lebanese, but it’s very
similar foods. And then she went, “Oh, that’s great. I’ll fix you dinner.” But I
try to open it up. It’s a fine line of bringing it up and of stereotyping people in the
room. That’s where I draw from my personal experience, because if you can
draw from personal experience then you can get rid of that stereotype. I can do
that pretty well with the African-American culture because my family is from the
South. And the way my mother cooked is very much like the culture in Central
Ohio of African-American food. So my mom cooked greens. My mom used ham
hocks and bacon to season things and fried chicken. My great-aunt made the best
fried chicken and all these things we’re worried about stereotyping the culture
about which might be dangerous for me as a Caucasian woman, bringing up, “Oh,
this is your food.” I have that experience. That’s what I grew up on. It kind of
breaks those barriers. Unfortunately I can’t do that with every culture, but I think
I can with some.19
19 During the next class after our interview, I saw Kathy put this strategy into practice when she said to a 34 These two examples from the story circle and the diabetes self-management
nutrition education class provide an entry point into some of the issues I will be
addressing throughout the rest of this dissertation. As I discussed above, the cookbook
authors present culture as an obstacle to healthy living, a problem they set out to solve by
reducing culture to a set of fetishized items. This reduction process resonates with Kim
Lau’s discussion of “the logic of serialization,” where she approaches collections of national and regional folktales as “essentialist, metonymic representations of the given culture or group, which is assumed to be an integrated, identifiable whole” (2000:73). As with serialized folktales, The recognition and continuation of culture in the cookbook depends on its objectification, as the relevance of the item depends on the label of the recipe slot. As long as the label remains stable, according to this logic, so, too, does the culture. In addition to declaring taste unimportant to the experience of food, one problem
I see here is that this representation of culture is too static and does not account for the negotiations that will inevitably take place as people read the cookbook and make decisions about whether or not to incorporate the recipes into their daily lives.
In the story circle, on the other hand, culture is presented not as objects but as practices. The first participant I quoted above begins by referring specifically to greens and fatback, foods typically categorized as traditional “soul food.” Like the authors of the cookbook, he is urging others to adopt healthier eating habits, to stop eating foods like greens and fatback. At the same time, his reference to greens and fatback works to highlight a shared cultural identity between him and his audience, a badge of cultural
group of clients who were primarily African American: “I’m from the south, so for me, biscuits are only good if they’re made with lard. Green beans HAVE to have pork fat. It is not a matter of whether or not I CAN eat these things. I just have to ask how many times A YEAR will I eat this?”
35 intimacy, one that is relevant to the past as well as the present. It calls attention to a shared cultural history, one that he reinforces when he says “this is indeed an issue of when we came to this country.” Within the historical situation he describes, slavery and its cultural legacy make up the scene, a key crisis situation to which the community rose.
In the present day, he urges members of the community to extend this legacy of survival into a new domain, the domain of lifestyle change for the purposes of health. As he pushes for people to change their eating habits, though, he seeks neither to eliminate this cultural legacy nor to give it a specific form. Instead, he transforms the role of culture from a constraining scene to a source of agency, invoking the idea of cultural resilience embedded in the symbolic meaning of soul food as a strengthening force: “Black folks, we can ill-afford anymore to be ignorant about taking care of ourselves when we have always known how to do it. We just need to get back to the basics.” Seeking to make visible the potential for self-help and agency to arise within shared cultural histories, he urges other participants in the story circle to draw upon their shared history of survival to fight the disease at the level of lifestyle.
The example from the nutrition education class, however, in conjunction with
Kathy’s reflections during my interview with her, indicates that shared histories or identities are not necessarily key components for the productive engagement with the concept of culture. Janet’s commentary – “It is important never give up your culture.
You have certain cultural foods that are important to you. And don’t lose that!” – does reduce culture to specific identifiable objects that connote a marked (racial) difference.
However, in Kathy’s reflections on her own explicit engagement with culture in her teaching, she disrupts such discernible categories of culture. She describes how through
36 conversation people realize that they are not just members of one culture or another but
have bridges in practice, bridges based on shared experiences rather than categorical
identities. Improving upon institutional engagement with culture, then, does not mean
simply getting culturally-marked people to teach culturally-marked people. After all,
African Americans wrote the cookbook described above, indicating that the idea of
culture-as-obstacle is not just being used by outsiders, but by members of the group as
well. Who is speaking matters less than whether “culture” is framed as a static object or a
flexible resource.
Discourses in Dialogue
Of the three framings of soul food I presented above, I suggest that the value of the latter two stems from the opportunities they provide for reflection and dialogue. In other words, a key difference lies in the distinction between scripted presentations of culture and emerging conversations in relation to culture. The former is representative of many current practices of institutional engagement with culture, where culture is most often identified in institutional realms as something to be managed. Thus, I am prompted to ask: To what extent might a dialogue-based model of cultural engagement in institutional contexts be more effective in moving individuals to adapt their lifestyle habits?
One way to begin addressing this question is to distinguish between the concepts of culture and vernacular. For the purposes of the present discussion, culture is the set of inherited forms and habits that people revise and work with, while the vernacular is that
37 dialogic space of use and practices.20 While institutional attention to culture typically
focuses on the forms and habits themselves as sites of intervention, attending to the vernacular broadens the scope of inquiry to focus more on how culture interacts with other forces acting upon the individual and shaping the choices he or she makes.
Attention to the vernacular, in other words, allows for a more dynamic engagement with culture.
The discourses shaping health education contexts are already implicitly dialogic.
I employ the term dialogic here as used by Bakhtin, whereby any utterance is already part of an ongoing dialogue. According to Bakhtin:
Any speaker is himself a respondent to a greater or lesser degree. He is not, after
all, the first speaker, the one who disturbs the eternal silence of the universe. And
he presupposes not only the existence of the language system he is using, but also
the existence of preceding utterances – his own and others’ – with which his given
utterance enters into one kind of relation or another (builds on them, polemicizes
with them, or simply presumes that they are already known to the listener).
(1986:69)21
Based on my fieldwork, I found that both professionals and laypersons operate on
assumptions of what others are saying and offering evaluations of these other utterances.
20 This understanding of the vernacular that emphasizes dialogue and practice over specific content resonates with definitions of the concept as discussed by other scholars, including Howard (2005), Primiano (1995), and White (2002). An early influential work informing much of the recent work on this concept is Margaret Lantis’ article, “Vernacular Culture,” where she defines the vernacular as “culture-as- it-is-lived appropriate to well-defined places and situations” (1960:203), pointing to its inclusion of various local and mass cultural processes. I will engage with other scholars’ applications of the term more fully throughout the dissertation.
21 Bruner and Gorfain examine the concept of the dialogic in relation to narrative, arguing that “Dialogic narration is not simply a dialogue or a debate but a polyphonic discourse based on telling, retellings, or references to important cultural narratives” (1984:68). 38 In the following chapters, I aim to highlight the importance of recognizing these dialogic
moves in effective health education.
Throughout my fieldwork from 2006-2009, during which I participated in and
observed a variety of diabetes education and community programs in Columbus, Ohio, I was struck by the multivocality of the communicative practices I observed. I repeatedly
witnessed speakers at these events demonstrating dialogic engagement with different
domains of authority, including medical, cultural, experiential, relational, and religious.
Approaching these speech events as dialogic has helped me to see how people
discursively positioned authoritative claims in relation to one another, pointing to
ongoing negotiations between institutional and vernacular domains of knowledge
production and transmission. As these implicit dialogues are already taking place, I want
to make a case for creating a performance-based methodology in health education that
explicitly recognizes the dialogic nature of how people ultimately make sense of diabetes.
In the chapters to follow, I present focused analyses of implicit and explicit
dialogic performances in both formal and informal health education settings. Each
performance I analyze includes negotiations between multiple voices, either in its form
(through genre hybridization and reported speech) or its context. Taking a performance
approach, I draw heavily on folklorists and linguistic anthropologists who, extending
Bakhtin’s ideas, have explored the dynamic relationships between situated speech events
and larger structures of power.
In Chapter 2, I present examples from my own interactions during my fieldwork
that led me to reflect upon how others discursively positioned me through processes of
contextualization. In the process I came to see more clearly the shifting roles I occupied
39 with the people I found myself talking to, observing, working with, and learning from
during the course of my research. Observing how others referenced the identities I embodied (e.g., white, middle class, diabetic) revealed the primacy of discursive situations, rather than identities, in shaping the data I collected.
The following three chapters explore the educational potential of three personal
narrative performances, with each performance framed explicitly as the sharing of a story
based on personal experience. As individuals are the primary subjects of personal
experience narratives, this genre provided speakers with an opportunity to reinforce,
question, or resist the publicly circulating discourses (described above) that place culture
and lifestyle in opposition to individual choice. All three performers of personal
narratives I present have situated themselves differently in relation to these powerful
discourses. Indeed, personal narrative performances offer particularly rich sites for
exploring how people make sense of the relationship between culture and individual
choice, in part because they offer discursive spaces for individual reflection and
evaluation. In addition, the personal narrative genre is associated with ordinary,
unmediated experiences. Thus, when people self-consciously “share their story” in the
context of public discussions about diabetes, the personal narrative is not just a vehicle
for communication but a metacommunicative resource as well.
In each of these three examples, the performer places his or her personal story in
conversation with a larger community narrative of diabetes. Through different
performance strategies, the tellers work either to distinguish clearly between the “I” story
and the “we” story or to blur the distinction between these two categories. As I hope to
show, each of the performance styles I identify does valuable work in helping other
40 individuals make sense of their own experiences and inspire healthy lifestyle changes. At
the same time, attending to the dialogic nature of these performances raises questions
about the assumptions underlying their messages as well as the limits of particular
strategies for different audiences.
In Chapter 3, I analyze two tellings of the same personal narrative by an African
American community health advocate in two different contexts – a story circle facilitated
by performance artist Robbie McCauley and a one-on-one interview with me in his home
two months later. Looking at these two tellings side by side reveals how he adapted the
story for each performance context (an interview with a young, white, female researcher
and a storytelling session for African Americans whose lives have been affected by
diabetes), pointing once again to the importance of discursive situations in shaping how
people talk about diabetes. Additionally, I show how, within the performance space of the story circle, he used his story as a vehicle for critiquing the current role health
professionals play in educating African American populations about the disease.
In Chapter 4, I examine the role imagined for “voices of experience” in a community education event governed by the translational model of communication
receiving so much attention in current medical policy, focusing particularly on the
inclusion of Dr. Jeff Levine, a physician and former contestant on the NBC television show The Biggest Loser. Despite the structural similarities Levine’s story shares with the story I analyze in Chapter 2, I identify key ways these two examples differ at the level of performance. While recognizing how the storyline Levine performs works to empower individuals to make lifestyle changes, I also identify the limitations of his performance
strategy in engaging with communities experiencing structural inequalities.
41 In Chapter 5, I turn to another performance of personal narratives taking place at
this same event, exploring the pedagogical potential of Robbie McCauley’s performance
piece Sugar, which deals with the African American experience of diabetes. I argue that
the ideas expressed in Sugar work as a type of vernacular theorizing that calls attention to
the “ideologies of communication” (Briggs 2005) that grant authority to certain people’s perspectives and ways of knowing over others. I also raise questions about the
educational potential of McCauley’s performative pedagogy, even as (and perhaps
because) it disrupts idealized flows of knowledge valorized within discourses structuring
the paradigm of medical expertise.
In Chapter 6, by way of conclusion, I also return to the concept of culture,
discussing potential opportunities that open up when its primary purpose shifts from
indexing categories of identity to enriching the networks of knowledge production and
transmission that emerge in conversation. I also provide suggestions for how recognition
of the dialogic vernacular and performance-based methodologies can be put to use in
health education contexts.
42
CHAPTER 2: “A Type 1 Diabetic is Just Walking Down the Street…”: Contextualizing Practices in Fieldwork Encounters
Putting Things in Context
I began this project with a desire to explore interactions between vernacular and
institutional discourses about diabetes. Approaching this project as a folklorist, I situated
myself within an intellectual lineage where my predecessors have historically had a foot
in both of these domains. According to Dorothy Noyes (2008), the folklorists’ historical
role has been that of a “provincial intellectual,” straddling the border between active
engagement with the lifeworlds of real people and an uneasy placement within
institutional hierarchies. While this position has often provided institutional incentives to
reproduce the problematic dichotomies, it has also provided folklorists with a productive
vantage point for looking critically at these same dichotomies.22
Much of this critical work in folklore studies has broadened the domain of
unofficial (or “folk”) culture, and folklorists now take for granted that folklore can be
found amongst all classes, races, and ethnicities, not just those at the margins of
22 Folklorists’ roles in processes of institutionalization have been studied extensively in relations to constructions of “the folk” in the project of the modern nation state (e.g., Abrahams 1993; Bauman and Briggs 2003; Mullen 2000; Wilson 1973). In this process, modernity became discursively separated from tradition while, similarly, scientific knowledge became discursively separated from folk belief. These discursive dichotomies still have resonance today, though folklorists have done much work to disrupt the boundaries between these categories.
43 “mainstream” society. Applied folklorists studying health beliefs have also made
significant moves toward complicating the domain of the institutional, showing the similarities in logic informing professional and lay discourses about health (Goldstein
2004; Hufford 1998; O’Connor 1995). Similarly, historian Michel Foucault and scholars of science studies have sought to denaturalize the ideological and cultural discourses of medical and scientific knowledge.23 While scholars have identified the constructed
nature of these dichotomies, however, institutional realms of health care and policy have
been slow to recognize such insights. Within these realms, credibility continues to be
determined based on epistemic identities and the assumed differences between belief and
knowledge, lay and professional ways of knowing.
A major goal driving this project has been to attend to this gap between scholarly
insights and institutional practice and identify opportunities for health educators to
engage with the messiness of peoples’ experiences with diabetes. For example, when a
person is first diagnosed with diabetes, he or she is called upon by health professionals to
make often radical changes to dietary habits. Given the centrality of food in expressions
of social and individual identities, the prescribed food choices people are called upon to
make have the potential to interfere with the person’s social world and sense of self
(Ferzacca 2004; Jones 2007). My initial plan as I was conceptualizing this project was to
collect personal narratives from people with diabetes about the dietary changes they were
called upon to make and to analyze how their narrative framings of their foodways
23 See, for example, Foucault (1973); Latour (1993); and Latour and Woolgar (1979).
44 interacted with their narrative framings of themselves.24 I also wanted to use these
narratives to examine the interactions between institutional and vernacular discourses in
social life, more specifically how people made sense of different ways of knowing about
food (e.g., nutritional, sensory, cultural) in narrative presentations of self.
Beginning in November 2007, in order to meet people with diabetes I could
interview, I started attending and becoming involved with a range of diabetes education
and community programs in Columbus, Ohio, including diabetes storytelling
sessions/support groups, diabetes self-management classes, diabetes prevention classes,
health fairs, Zumba exercise classes for people with diabetes, diabetes children’s camp,
diabetes advocacy events at the state house, and the Global Diabetes Summit Community
Event. The more I participated in these public events and programs, the more they
became the focus of my “researcher’s gaze,” as my research interests shifted from
narrative constructions of self to the ways people engaged with diabetes as a community
issue in these venues. That is, my research interests shifted from the narratives of
embodied experiences to the less intimate sphere of public discourses of culture. I was
struck by the prevalence of the genre of personal narrative in these communicative
spaces, as well as the ways in which this genre was put to use performatively to validate,
delegitimize, and call into question different ways of knowing about diabetes (e.g.,
expert, experiential, cultural). In the following chapters, I will offer analyses of the
metadiscursive work of select performers of personal narratives I encountered over the
course of my research. In these chapters, I seek to follow a now basic convention in the
24 Other works examining narratives in relation to diabetes include Garro (1995, 2006); Garro and Lang (1993); Lang (1989, 2006); and Smith-Morris (2006).
45 presentation of fieldwork-based research – ethnographic reflexivity – whereby the
researcher attempts to make visible her role in shaping the materials she collects,
interprets, and presents. Before I move on to these analyses, however, I want to offer a
more focused critical engagement with my attempts at reflexivity.
Since the “reflexive turn” in ethnographic disciplines, scholars have shared a
general consensus that researchers need to be mindful of how their practices of fieldwork,
interpretation, and representation shape their understandings of their field data.25
Without seeking to diminish the value of such methodological concerns, I wish also to be
mindful of the ways in which practices of reflexivity get put to use by scholars or, in the
words of Charles Briggs, how “scholars construct images of themselves and the objects
of scholarship, as well as link them, often hierarchically” (1993:387). Briggs critically
examines the metadiscursive practices employed in genres of scholarly writing, defining
metadiscursive practices as “the methods used in locating, extracting, and interpreting
various forms of discourse” (1993:388). He focuses specifically on the ways scholars
using performance-based approaches and ethnopoetics attempt to present authentic
performances of the folk as spoken to the folk, “erasing the role of the scholar in the
production of folkloric texts” (1993:411). He goes on to explain:
this invisibility is a literary effect that is achieved through particular
metadiscursive practices and the rhetorics used in legitimating them. Ironically,
the very features that shape the scholars' involvement in discourse production-
25 Clifford and Marcus’ Writing Culture (1982) and Ruby’s The Cracked Mirror: Reflexive Perspectives in Anthropology (1982) are often cited as key texts in the “reflexive” turn in ethnographic disciplines. For feminist critiques of and responses to Writing Culture, including explicit recognition of feminist antecedents to the reflexive turn, see Behar and Gordon’s Women Writing Culture (1995).
46 choices as to where to go, whom to choose as an accomplice, what sort of
situation to design, which recordings to transcribe and publish, how to frame
them, how to interpret the texts, and so on-are designed to minimize the traces
they leave in published texts. (1993:411)
Briggs argues, then, that the metadiscursive practices creating the fieldworker’s invisibility in the production of texts ultimately reinforce the researcher’s scholarly authority, naturalizing his ability to speak about and on behalf of the performers and the performance texts he is representing. While Briggs focuses on how the creation of invisibility naturalizes the scholar’s textual authority, I see that this argument extends to the hypervisibility of the researcher created through practices of self-reflexivity.
Wanda Pillow raises similar questions in her examination of “the role of reflexivity as a methodological tool as it intersects with debates and questions surrounding representation and legitimization in qualitative research” (2003:176). She joins others in questioning the link between reflexivity and “better” research and the assumptions underlying its use as a methodological tool. Bringing Briggs’ and Pillows’ ideas together reveals how when reflexivity is understood as a methodological practice, it becomes a process of contextualization in which key elements of the context are constructed during the process of representing the research conducted. Situating reflexivity as a methodological exercise reifies distinctions between the texts we
represent and analyze and their contexts as frameworks of interpretation. The scholar situates herself in the domain of context, and audiences understand this context to be a
framework for more clearly understanding the topic of research. The hypervisibility of
the researcher’s role in the fieldwork encounter performs a kind of methodological
47 transparency at the same time the researcher determines the information that is relevant and the information that is not. I must make clear that I am not arguing that we abandon these attempts at methodological transparency; indeed, I do not think such a move would be productive, and I myself have tried to employ these modes of contextualization in this dissertation. What I want to do, though, is call attention to how textual performances of methodological transparency, reifying distinctions between text and context, can effectively render invisible other contextualization practices taking place in the discursive space of the fieldwork encounter.
In this chapter, I present select examples from my own situated interactions during my fieldwork that led me to extend my reflexive engagement with the fieldwork process beyond how I situated myself in fieldwork encounters to how I was discursively positioned by others through processes of contextualization. Noting the shift first from text to context and then context to contextualization following the performance turn in folklore and other disciplines, Richard Bauman and Charles Briggs identify contextualization as “an active process of negotiation in which participants reflexively examine the discourse as it is emerging, embedding assessments of its structure and significance in the speech itself” (Bauman and Briggs 1990:69). Context, then, is not merely a residual thing that somehow exists separately from a performance text, but something created in the performance encounter. Drawing on Bateson’s metacommunication (1972), Goffman’s framing (1974), and Gumperz’s contextual cues
(1982, 1992), Goodwin and Duranti similarly call attention to “the dynamic mutability of context” given “the ability of participants to rapidly invoke within the talk of the moment alternate contextual frames” (1992:5). Modes of contextualization create interpretive
48 frameworks that serve not only to orient the participants in a situated performance encounter toward a mutual understanding of what is being communicated; as I seek to demonstrate in this study, they can also create interpretive frameworks for other situated communicative interactions.
By recognizing the contextualization practices of the people I was studying, I came to see more clearly the multiple roles I – a young white female of average weight who has type 1 diabetes – occupied in my situated interactions with those I found myself talking to, observing, working with, and learning from during the course of my research.26 It also brought my attention in a more focused manner to the broader contexts shaping these performance encounters as well as, in the words of Bauman and Briggs, the
“larger systemic structures in which performances play a constitutive role” (1990:80).
“A type 1 diabetic is just walking down the street…”
One evening in April 2006, I attended a party at the house of a fellow graduate student in Columbus, Ohio. At one point during the party, I started talking to a young, white surgeon. When he heard I was a graduate student at Ohio State, he asked me about my research interests. I offered a very brief answer to this question by saying that, although I had not begun to do any fieldwork, I wanted to explore how people make sense of their experiences with diabetes, particularly regarding the dietary changes people
26 This examination of reflexivity builds upon the work of ethnographers engaged with the issues of situating oneself and one’s motives in the fieldwork encounter. See, for example, Lawless (1993), Najéra- Ramírez (1999), Paredes (1977), Visweswaran (1994), and Sawin (2004).
49 are expected to make when they are diagnosed later in life. He asked me how I got
interested in this topic, and I explained that I myself had type 1 diabetes, and that I was
struck by the personal narratives I had heard during “story circles” I participated in
during performance artist Robbie McCauley’s visit to Columbus a few months earlier in
January 2006, where people with diabetes came together to share their experiences with
one another. He began to talk about the diabetic patients he encounters in his own work,
describing, for example, how some of them were so obese that several hospital staff
members were required to move them. He explained, “I tend to have more sympathy for
the type 1 diabetics I get than the type 2.” When I asked what he meant, he continued
with this metaphor: “A type 1 diabetic is just walking down the street and gets shot. A type 2 diabetic is in a gang, robs a liquor store, pulls a gun, and then gets shot.”
My conversation with the surgeon was my initial entry point into thinking about
diabetes and stigma, for his metaphor of criminality provided a vivid image for thinking
about this topic, one that ties together issues of class, race, morality, and blame while situating type 2 diabetes and its complications as expected results of a series of bad choices. As I began to show in Chapter 1, diabetes offers a particularly rich site to explore the connections between bodily practices and stigma, for its association with
“poor lifestyle choices,” particularly eating and exercise habits, and a lack of control can work to discredit individuals for their supposed lack of care of the self (Broom and
Whittaker 2004). The surgeon’s words here evoke similar imagery as the widely circulating words of the CDC’s Dr. Frank Vinicor – “Genetics may load the cannon, but human behavior pulls the trigger” – pointing to the ways that language can work to
50 naturalize discursive associations between type 2 diabetes and what Erving Goffman calls
“blemishes of individual character” (1963: 4).
When I shared the surgeon’s words with an African American community health
educator I interviewed three years later, her immediate response was “It always seems to
go back to race.” While the surgeon did not identify particularly racialized bodies in his
comparison, this woman saw in his statement a kind of racially-infused image of
criminality I also saw.27 Besides the high incidence of representation of African
American gangs in popular culture and media outlets, the racialized imagery in this
metaphor is reinforced by the disproportionate rates among African Americans of
morbidity and mortality related to diabetes, particularly in Columbus, Ohio. According
to data released by the Centers of Disease Control and Prevention in 2007, an estimated
23.6 million persons in the United States, or about 7.8 percent of the population, had
diabetes, with African Americans, Hispanic/Latino Americans, Native Americans, and
Asian Americans/Pacific Islanders being identified as the populations most at risk. Ohio
has been significantly affected by this growing epidemic, where according to the Ohio
Department of Health, diabetes is the sixth leading cause of death in the state; further, in
2004, a Columbus Health Department survey showed that residents of the near east side
of Columbus, a predominantly low-income African American neighborhood, were disproportionately affected by diabetes and its complications.
In Stigma: Notes on the Management of Spoiled Identity, Erving Goffman begins
his discussion with the body as he presents the ancient Greeks’ definition of stigma as
27 Indeed, her response resonates with philosopher George Yancy’s words from Black Bodies, White Gazes: The Continuing Significance of Race, “From the perspective of whiteness, the Black body is criminality itself” (2008:xvi).
51 “bodily signs designed to expose something unusual and bad about the moral status of the signifier” (1963:1). Stigma today, he argues, now refers more to the “spoiled identity” than to its bodily evidence. While this shift situates the basis of stigma away from the physical body to discrediting attributes, though, the body remains a central site where stigma is perceived and experienced (Ferrell 211). In my conversation with the surgeon described above, we see multiple engagements with stigmatizing attributes tied to the marked body. We see his presentation of his patients’ bodies, often obese and suffering from complications related to diabetes, as experiencing the material effects of the blemishes of individual character so often associated with diabetes, including a lack of self control. Also, through the metaphor of criminality, we see constructed associations between blemishes of individual character and specifically black bodies, highlighting how stigma is, in the words of Goffman, “really a special kind of relationship between attribute and stereotype” (1963:4), a relationship where, at least in the case of diabetes, the body is always in the forefront.
In their article “Conceptualizing Stigma,” Bruce G. Link and Jo C. Phelan expand upon the relationship between attribute and stereotype by arguing that the term stigma applies when “elements of labeling, stereotyping, separation, status loss, and discrimination co-occur in a power situation” (2001:367). Indeed, in cases like diabetes, such systematic devaluing of individuals associated with certain labels can have very real health implications (Saylor 1990); at the structural level, for example, it can restrict people’s access to health resources, and at the individual level it can prevent people from seeking out the care they need (Link and Phelan 2001, 2004; Wailoo 2001).
52 If, following Link and Phelan, we understand stigma as the outcome of a process,
it is worthwhile to draw a distinction between stigma (the effect) and stigmatizing
storylines (the naturalized connection between label and stereotype which lays the
foundation for the effect). I use the term “storylines” deliberately here, for negative
attributes associated with diabetes become connected to certain emplotments projected
onto the life stories of the stigmatized. For example, the surgeon emplotted the life story
of a type 2 patient as one being typified by a series of harmful choices not deserving of sympathy, an idea he communicated to me by comparing such a patient to a gang member who tries to rob a liquor store. Stigmatizing storylines occur when stereotypical
categories overdetermine individual identities. Dangers arise when the power
differentials structuring the relationship between negative attribute and stereotype
remains unquestioned – when, for example, speaking about health behaviors in terms of
gang-related crime becomes tellable in situations of casual conversations.
Goffman identifies three types of stigma, or discrediting attributes: “abominations
of the body,” “blemishes of individual character,” and “the tribal stigma of race, nation,
and religion” (1963:4).28 While Goffman introduces these types as distinct from one
another, historian Keith Wailoo describes how these three types of stigmas have
converged within African Americans’ experiences of diseases in the 20th Century,
“designating hidden invisible taints, and thereby reinforcing broader prejudices and
policies” that contribute to health disparities in the United States. I would argue that the surgeon’s metaphor also reveals a convergence of these three types of stigma, offering
28 For Goffman, abominations of the body refer to physical deformities; blemishes of individual character refer to invisible flaws, such as weak will; and tribal stigma refers to membership in stigmatized groups, such as African Americans. 53 further support for Veena Das’ claim that discursive formations of diseases very often get
“hooked into discursive formations of race and racism.”29
Early Methodological Considerations
Reflecting upon my experience with the surgeon, it became clear to me that his
metaphor was as much a commentary on the present situation as it was a synthesizing
evaluation of his past work experiences. I doubt, for example, that the surgeon would have offered this comparison if I had not told him that I had type 1 diabetes. As he
shared with me his experiences with his patients with type 2, this metaphor served to
show that he differentiated my condition from theirs, me from them. It is also doubtful, I
believe, that he would have used such racialized imagery if I had not been white. With
this metaphor, he situated me, his listener, in terms of stigmatizing binaries: innocent
victim versus one undeserving of sympathy.
This experience led me to consider the following questions as I conducted my
fieldwork, particularly as my fieldwork brought me into contact with people who were
African American and had diabetes: To what extent do people with diabetes discursively
engage with diabetes-related stigma as they talk about their experiences with the disease?
How would my embodied presence influence others’ discursive engagements with the
stigma(s) associated with diabetes? Following Aaron Turner’s call for practices of
reflexivity to take into account the importance of the person’s physical presence in the
29 See Briggs (2005), Briggs and Mantini-Briggs (2003), and Goldstein (2001) for folklorists’ examinations of similar issues.
54 field, I approached this question initially as a methodological one, a move toward
reflexively engaging with my own fieldwork and the “data” I collected during that
process. Seeking to approach my field research as a project of “dialogue, performance
and production” (Pool 1994:239) in a range of settings, including one-on-one interviews,
informal conversations, story circles, and more formal diabetes education classes and
programs, I knew I was undeniably an active participant in these settings, never a mere
observer, even during times when I sat silently.30
As I began conducting interviews and observing formal and informal diabetes
health education events, I made a special point in my field notes to reflect on how my body occupied the space of my fieldwork encounters. For example, when I observed diabetes nutrition education classes, I noted where I sat in relation to the adult students in the class, sometimes at the large table where the students sat and sometimes at a smaller table set up separately for observers, so that I could reflect upon how my body’s positioning in that space influenced the informal conversations I had with the students during the break. I made a point to record the ways in which people would comment on the insulin pump hooked onto my waistband, and I would reflect on whether I thought that recognition was seen as a marker of identification (e.g., “I didn’t realize you had
diabetes, too!”) or differentiation (e.g., “I’ve heard good things about the pump, but my
insurance doesn’t cover it.”). Looking back at these early field notes, it has become clear
to me that my interest in my embodied presence was contained within what I deemed the
30 A student of Johannes Fabian, Pool built upon Fabian’s approach toward ethnography as a performative rather than an informative endeavor, that is, as a process where meaning is produced rather than one where preexisting information is accessed and documented. See also Sawin (2004) and Tedlock and Mannheim (1994) for discussions of and demonstrations of the inherently dialogic and emergent nature of ethnographic endeavors.
55 realm of the contextual; that is, I was documenting what I recognized as the significant details of my embodied presence in order to inform what I saw to be a more “primary,” language-focused research question that I brought to these same encounters: How are people with diabetes responding to the stigmas they encounter, and what discursive resources (such as genres, claims to authority, strategies of resignification) are people drawing upon in their responses?
This research question emerged partly in response to Link and Phelan’s reminder that an understanding of stigma should extend beyond how passive victims manage spoiled identities and incorporate how “people artfully dodge or constructively challenge stigmatizing processes” (2001:387), a point echoed by others since (Campbell and
Deacon 2006; Howarth 2006). Through a performance-based approach, I hoped to identify some of the performative strategies of resistance employed by people with diabetes in their conversations with me and, in the case of African American community activists and health educators, with fellow community members who either had or were at risk for diabetes.
I expected to find in these settings critical engagements with the stigmatizing storylines described above, and I also expected that I would need to reflexively situate myself as a participant in these contexts. As my field research progressed, though, I soon found that my body was clearly not contained in the realm of the contextual and that my reflexive and analytical considerations interacted in ways I did not anticipate. More specifically, I found myself encountering characterizations of my embodied self in others’ discursive responses to stigma.
56 In the following sections, I offer two examples of such encounters during my field
research in Columbus, Ohio, one taking place during a story circle led by performance
artist Robbie McCauley and one during a one-on-one interview with a community
member actively involved in fighting health disparities among African Americans. In both cases, I was the only non-African American in the room; in addition, although speaking in different types of settings for different purposes, both speakers were self- consciously responding to processes of stigmatization affecting African Americans in relation to diabetes, challenging these processes by reorienting the conversation away from individual attributes to larger systemic structures of inequality. Their incorporation of me into their performative challenges to stigma has led me to rethink some of the assumptions underlying my research, which I will discuss further at the end.
“You didn’t know that, huh?”
On November 30, 2007, after a brief period of socializing and snacking on fresh
fruits, vegetables, cheese, and crackers, eleven people were sitting in chairs arranged in a
circle in the main room of the small building that was the Near Eastside Healthy Lifestyle
Center, a community center that provided health services and educational programs
related to the prevention, diagnosis, and treatment of diabetes to the residents of
Columbus’ near east side. Everybody had gathered to be part of a story circle facilitated
by Robbie McCauley, an African American performance artist who was conducting these
57 circles with people whose lives have been affected in some way with diabetes.31 In these story circles, she created spaces where people could share and discuss their experiences with diabetes. In the process, McCauley facilitated conversations that engaged with themes that she explored in her solo performance work-in-progress Sugar, in which, according to publicity materials, she draws on her own “struggle and survival with diabetes as connected to slavery, war, work, romance and food.” Living in Boston,
McCauley had traveled to Columbus to perform Sugar at the Global Diabetes Summit in
Columbus the following day. McCauley has been to Columbus once before, when she was an artist-in-residence in the Departments of Theater and Geography at Ohio State in
January 2006. I was asked to assist with McCauley’s 2006 visit by Marie Cieri, an
Assistant Professor in the Department of Geography who had previously worked with her as a producer. One of my duties was to participate in two of her “story circles.” The first took place at the Multicultural Center on Ohio State’s main campus and was made up mostly of individuals who had some connection to the university, including staff, students, and faculty. The second took place at the Central Community House, a community center in Columbus, Ohio; Professor Cieri and I were the only non-African
Americans participating in the second story circle. In both circles, the majority of people had type 2 diabetes. I myself had always viewed diabetes as an individual problem, specifically MY individual problem, so I was struck during the second circle by the ways individual experiences were incorporated into larger community narratives of illness; my participation in this circle planted the seeds, so to speak, for my dissertation project.
31 See Cieri and McCauley (2007) for a description of McCauley’s use of and reflections on the story circle method.
58 When McCauley returned to Columbus in 2007, I volunteered to help with her visit, now
ready to observe her work with the “eye of a researcher.” On the evening of November
30, 2007, I picked her up from her hotel and drove her to the NEHLC. Besides
McCauley and me, the other participants included community residents who had diabetes
or family members with diabetes, three staff members of the NEHLC who were also
community residents, and one physician from the Ohio State University Medical Center.
I was the only non-African American participant.
Once everybody was seated, McCauley introduced the basic ideas guiding story
circles. She explained that in the circle, all participants would have a chance to speak
about their experiences, and the only “rule” was that everybody would listen respectfully
when somebody was talking. She also explained that the story circles she facilitates
usually start on a theme. The last time she was in Columbus, she had asked participants
to talk about their dramatic experiences with diabetes, or “diabetes as drama.” While people were free to talk about whatever they wanted in this story circle, she was interested in having people share how had they found out they had the disease.
At one point during the story circle, one woman began talking about her
husband’s difficulty taking care of his diabetes without health insurance, and she shared a
story about how they had to consider the possibility of skipping his medications because
they could not afford them. After she finished telling her story, McCauley looked at me
and said:
Well, [turning to me] Sheila [looking around the circle], would, when we did this
before, I have to bring this up [laughs], Sheila was helping the person responsible,
59 and Sheila also has diabetes, and we were in a circle similar to this and sh- she
said it couldn’t, it hadn’t occurred to her how hard it was for people in the circle,
mainly who were African American, how hard it was to get diagnostic, diagnosis
and care and so forth, and of course that brings up the whole subject of what we
are looking at at the caucus of disparities and diabetes, but it was like, [laughs,
looking back at me] you didn’t know that, huh?
Beginning with the phrase “Speaking of disparities,” another woman shared a story about a phone conversation she had had with her son, who had been diagnosed with diabetes several years before. When she asked him what his Hemoglobin A1c was, he did not know what she was talking about.32 It was at this point that she learned that his
doctor had never talked to him about his Hemoglobin A1c, despite its importance in
effectively monitoring blood glucose levels over a long period of time.
McCauley replied, “It’s those kinds of subtle things in diabetes that makes all the difference, because that’s what it is. You don’t feel like you’re sick until it’s too late.”
An implicit theme in this circle was the health disparities people experienced as a result of being stigmatized as African Americans. In the process, several participants, particularly McCauley and staff members of the NEHLC, worked to tie individuals’ experiences into a more “collective” African American experience. For example, the “I” in McCauley’s recounting of her own experiences slipped into a “we” when she said,
“We [African Americans] are especially creative around spirituality.” At another point
32 The hemoglobin A1c test measures a person’s average blood glucose levels over an approximate 3 month period. For people without diabetes, the normal range is 4.0-6.0%. For people with diabetes, the goal is less than 7.0%.
60 during the circle, the conversation turned to how less active kids are today than when the
participants were younger. One woman recounted playing until dark and knowing it was
time to come home when the street lights came on, and one of the health educators
responded, “That’s an African American home—when the street light comes on you
better come in!”
The initial story shared by McCauley above references four different contexts, all of which are important for understanding what took place during the exchange: 1) The story circle at the Central Community House in January 2006, referenced by McCauley in
2) the November 2007 story circle at the NEHLC, during a conversation about 3) health disparities faced by African Americans, which is a topic being addressed at 4) the Global
Diabetes Summit Community Event the next day. After a slight hesitation, she addresses me directly by name [“Sheila”], before she starts to invoke the context of the earlier story
circle [“when we did this before”]. She then breaks frame, addressing me once again in
the present [“I have to bring this up”]. Her quiet laughter that accompanies this last
phrase indicates a kind of awkwardness, an awareness of a social divide. It also sets up
the story to follow as one that is at least somewhat humorous. The story returns to the
frame of the earlier story circle as McCauley situates my role as a participant in that
event. I am described as having two roles: the first one presented is an “official” role
[“Sheila was helping the person responsible”], and the second one is a more personal role
[“and Sheila also has diabetes”]. Next, McCauley explicitly draws a connection between
the reported and the reporting context [“and we were in a circle similar to this”], which
she reinforces later on when she describes the other participants as mainly African
American. The reported speech in her story is communicated through indirect discourse
61 [“and sh- she said it couldn’t, it hadn’t occurred to her how hard it was for people in the
circle… how hard it was to get diagnostic, diagnosis and care and so forth”]. Next, she
ties my words into the broader contexts of health disparities and the event where she will
perform the following day. Her story ends in the following way: “but it was like,
[laughs, looking back at me] you didn’t know that, huh?
This final line carries a kind of ambiguity, in that it is not quite clear in which
frame that question belongs. Is the question being asked within the frame of the earlier
story circle shared in her story or in the frame of the present story circle? If it is the
latter, who is the primary audience for that question? Me? The other participants in the
story circle? She looks at me when she asks it, but when she finishes telling her story,
another person immediately begins a story about her own experiences, using the
transitional phrase “Speaking of disparities,” indicating that the story shared by
McCauley, like the one shared by the woman before her, offered an example of factors contributing to African American health disparities.
The focus of McCauley’s story is an instance of reported speech through indirect
discourse, and I am the central character. Drawing upon the work of Deborah Tannen
(1989) and Amy Shuman (1992) on the dynamic interrelationship between reported
speech and the reporting frame, Gabriella Modan shows that, “Through this relationship
between the reported and reporting frames, speakers can take certain stances vis-à-vis the
content or the utterer of the reported speech” (2007:178). At the time this story was told,
I realized that my own experiences with the disease were significantly different from the experiences of the individuals sitting with me in the circle. I thought back to the earlier story circle I had participated in, when I first came to think consciously of diabetes as a
62 community, rather than an individual, issue. As I later listened to, transcribed, and reread this story, however, my attention turned to the relationship between the reporting of my words and my embodied presence in the room.
During the same period of time in which I was transcribing this story circle, I read the script of McCauley’s performance piece, Sally’s Rape, which deals with the experiences of her great-great grandmother, a slave who had two children by one of the overseers. The performance piece was performed by Robbie McCauley and Jeannie
Hutchinson. Under the section entitled “Players,” the character Jeannie is described as
“the one who plays the roles she’s given and who sometimes erupts. She is a dancer who sings and acts. She is white” (1994:218). While a great deal of the piece consists of
Jeannie, playing herself, having conversations with Robbie onstage, she also slips in and out playing other white characters, including, for example, Thomas Jefferson’s wife, a slave dealer, and a white rape victim. Below is a section of the script in which Jeannie slips into and out of the persona of another white character:
ROBBIE: In 1964 at the library job a US history major who’d graduated from
Smith College said –
JEANNIE: I never knew white men did anything with colored women on plantations.
ROBBIE: I said, “It was rape.” Her eyes turned red. She choked on her sandwich
and quit the job.
JEANNIE: (Pointing at each Audience group in turn): Was the Smith College
graduate denying…? lying? or dumb? (Audience response) Yeah, she was dumb.
I keep telling you that.
63 In this scene, the words of the Smith College graduate are channeled through the
embodied presence of Jeannie. While she only takes on this persona for one line and
distances herself from the Smith College graduate the next time she speaks, the statement
and what it represents (denial, lying, and/or stupidity), are intertwined with the visual image of her marked white body.33
Scholars of theatre have examined in detail McCauley’s uses of the body on stage
and have identified the ways in which she uses her body as a primary mode of
communication in her performance pieces (Nyman 1999; Whyte 1993). According to
Whyte, “[McCauley’s] is at once a body saturated with memories of sensual experience,
a text written by racism and bounded by family, history, and gender” (1993: 277). After
reading this play, I began to think about how the scene would have been different if
McCauley had been onstage by herself, if the audience had not had the visual cue of
Jeannie’s body to ground the statement as a marker of particularly white denial, lying, or
stupidity. In this scene, and in fact this whole play, the audience must engage visually
with the racialized bodies onstage as they engage with the racial issues being addressed
by the actors. The way Jeannie’s body channels different types of discourses calls
attention to the ways in which discourses are situated within and emergent from physical
bodies.
Returning to another type of performance, the story McCauley shared about me
during the story circle after reading this play, I see at least one similarity between me and
Jeannie: our marked physical bodies became communicative resources both amidst and
within the dialogue taking place on stage and in the story circle. In both cases, reported
33 The phenotype of whiteness, then, indexes categorical characteristics of white subjectivity. 64 speech was tied to physical bodies that were present in the immediate performance
contexts; the words of the Smith College graduate were tied to Jeannie’s body, and my
words spoken in the past were connected to my embodied presence in the reporting
context. The visibility of my and Jeannie’s bodies allowed for certain things to go unsaid
at the level of language (e.g., “She was white”), while other positioning characteristics
that were not visible were specifically identified (e.g., “a US History major who’d
graduated from Smith College,” “Sheila was helping the person responsible,” “Sheila
also has diabetes”).
Thinking about McCauley’s story in relation to the scene from Sally’s Rape, I
began to recognize the role played by my physical body where the lines between reported
and reporting contexts converged, where past conversations were brought to bear on the
present moment, where the immediate performance context was connected to larger
social structures. McCauley drew on my present body – one marked as both white and
diabetic – as a communicative resource in the reporting context as my words were used to demonstrate the types of [denying, lying, or dumb] discourses that contribute to, or at
least naturalize the presence of, health disparities.
“Come on, Sheila. Come live on the near east side!”
McCauley returned to Columbus in March 2009, where she conducted two more
story circles, which I helped organize, and performed Sugar at the Department of African
American and African Studies (AAAS) Community Extension Center located in the near east side of Columbus. One participant in one of the story circles was Bill Thompson, a
65 community resident actively engaged with fighting health issues within the African
American community of Central Ohio. After McCauley’s visit in March 2009, I contacted some of the story circles’ participants, including Thompson; I described my research project and asked him if he would be willing to talk to me about his thoughts on
McCauley’s performances and story circles. He graciously agreed to talk with me, and we made arrangements to meet at his house in the near east side on a Saturday afternoon.
When I showed up, he had a couple of visitors sitting in his living room. He introduced me to them and his wife, explaining that I was there to talk about McCauley’s performances, and as they said goodbye to one another, he invited me to sit on the couch.
When I asked permission to audio-record our conversation, he responded, “Oh! So this is a SERIOUS interview!” He then agreed and, as I pressed the record button on my small digital recorder sitting on the coffee table between us, he said, “So, Sheila, what would you like to know?”
I began by asking him about his impressions of the performances as well as how they might contribute to the kind of community work he was already doing. He replied:
Sheila, I tend to speak with a voice that deals with issues of African Americans
and health ((SB: mmhmm)) because everybody else deals with their particular
concerns ((SB: yeah)) and the African American voice as it related to chronic
disease is really underrepresented ((SB: yeah)) and what I think that people like
Robbie and people like myself do is bring a lot of attention to chronic disease that
affects African Americans, not minorities ((SB: mmhmm)) but African
Americans, because when you look at the conditions of chronic disease like
diabetes, African Americans are the leaders in terms of the prevalence of the
66 disease, and the morbidity and the mortality of the disease. It’s the worst thing,
you know, when you deal with cardiovascular, diabetes, stroke, cancer, and all
those categories African American people have the highest rate, ((SB: yeah)) you
know, and its not a minority issue, it’s an African American issue, we all are
affected by those diseases ((SB: yeah)) but the prevalence and and the
comorbidity factor is highest among African American people ((SB: yeah)).
I then asked, “You had mentioned during the story circle your part in getting the
Near East Side Healthy Lifestyle Center started, so those were the types of issues you were interested in addressing, right?” He began to tell me how his own diagnosis with type 2 diabetes got him involved in community health issues, and he explained how his own experiences showed him the importance of spreading the word in the community:
… I was able to kind of think about and look at the research that had taken place
that involved lifestyle changes. And there is nothing in the black community that
supports healthy lifestyle living. All the messages you see, if you go down five,
six blocks you’ll see cigarettes and you’ll see hard alcohol advertised, but you
don’t see anything in the African American community that speaks to living
healthy…My argument has always been for a suburban community, the
infrastructure for being healthy is already built into that area, that you have
grocery stores that have cooking classes, that you have schools and rec centers
that promote physical activities and that there is a health tax for people who live
in urban communities because we don’t have those same infrastructures in place,
so you know I tell anybody its not that black folks are not predisposed to being
healthy, it’s that if I bring white folks in the urban setting with what’s not here,
67 they’ll be unhealthy, too. And so the the issue is that if you look at the urban
setting the impact is on people of color because that’s where they reside. But if,
you know, I wouldn’t necessarily promote, this area here has the highest diabetes
rate in the state. “Come on, Sheila, come live on the near east side!” You’d be
like [shaking his head], “No, Bill!” [laughs], and so those kinds of issues are
issues that have to be addressed…
In this interaction, Thompson calls attention to the external forces (rather than internal attributes) causing widespread rates of diabetes among African Americans. Like
McCauley, he incorporated reported speech (“Come on, Sheila, come live on the near east side!”; “No, Bill!”) into this discursive response to stigma. This rhetorical move, however, differs from McCauley’s in at least one significant way. He made no claim that the event he described actually happened. Rather, he is directly quoting from a hypothetical situation. Quoting the hypothetical, he demonstrates how direct discourse reported speech is less a matter of faithful representation and more a “constructed dialogue” meant to comment upon the present communicative context (Tannen 1989).
At the time of this exchange, I was reminded of Alessandro Portelli’s report of his oral history interview with Reverend Hugh and Mrs. Julia Cowan, an African American couple from Harlan County, Kentucky, in which Mrs. Cowan said: “…although you might not have done a thing in this world to me, but because you’re white, of what my parents said…I don’t trust you, you know…There’s gonna always be a line” (1997: 37).
Thoughtfully reflecting on this interaction , Portelli writes:
68 In saying, ‘I don’t trust you,’ she is ostensibly, and perhaps intentionally,
speaking in general terms, using the impersonal you. But I could not help feeling
that this broad, political mode was indissolubly twined with a very personal,
immediate mode: she was talking in general, but she was also talking to me.
(1997: 37)
Like Portelli, I also saw a convergence between the personal and political modes shaping
Bill’s words above, where he was positioning himself in relation to me at the present
moment at the same time he was using the hypothetical exchange of reported speech to
prove a broader point about how structural inequalities shape health disparities. The
metaphoric line invoked by Mrs. Cowan has a literal form here, a geographical boundary
between different parts of the city that structures different types of lifestyles, one that has
very real health implications.
The more I have reflected upon his words here, the more I see similarities with the
rhetorical moves made by McCauley in the story circle described above. What we see in
both encounters is not stigma management, as studied by Goffman, but a critical
engagement with stigma as a process rather than merely an outcome. The speakers in
these examples are not responding to explicitly stigmatizing language such as that
employed by the surgeon I described above. Rather, they are identifying the mechanisms
by which the surgeon’s statement becomes speak able in the first place. In both cases,
they communicate an underlying understanding that stigma is not merely a product of
sinister intentions, but a process in which I (and/or members of the category I represent)
have been complicit. Through multiple framings, I am engaged with as both an
embodied presence and a discursive category, an audience member and a communicative
69 resource; as a result, it has become impossible for me to look at their situated responses
to the processes of stigma formation and maintenance without encountering my role
within them.
It is important to acknowledge here that my body indexed a particular subjectivity
that extended beyond race and entered into issues of class as well. Obesity and its
resulting health issues are very prevalent among white working-class people who also
find themselves being placed in stigmatizing storylines. When my whiteness is implicitly
invoked in examples presented here, I am being constructed as the opposite other on
many levels, including those based on race, class, neighborhood, and affiliation with the
university. In these encounters, then, I am explicitly being marked as the unmarked, as one who does not find myself the subject of stigmatizing storylines.
“You didn’t know that, huh?” “Come on, Sheila. Come live on the near east
side!” Encountering myself as a communicative resource in the performances above
jolted my reflexive considerations outside of the domain of context and into the domain
of text. This blurring of the boundaries between text and context took me beyond the binaries structuring how I interpreted my own role to see practices of contextualization taking place other than my own. In the process, it has contributed to my understanding of both the strategies employed to challenge stigmatizing storylines in relation to diabetes and the broader discursive forces keeping these storylines in place. Additionally, observing myself and the identities I embodied (e.g., white, middle class) being used as a discursive resource pointed my attention to the primacy of discursive situations, rather than pre-existing identities, in shaping the data I collected; that is, the relevance of my white body in these encounters stemmed from the meanings it indexed in the dialogic
70 spaces of performance in relation to diabetes. Meaning was constructed through dialogue and the evaluative opportunities dialogue provides. In the following chapters, then, as I present multiple performance texts from my fieldwork, I remain mindful of the primacy of the discursive situation (and the explicit dialogue it allows) in shaping the means by which people work to make sense of different ways of knowing about diabetes.
71
CHAPTER 3: “My Diabetes Story”: A Comparative Look at Contextualization
In the previous chapter, I drew upon select examples from my fieldwork to demonstrate how others used my embodied presence as a communicative resource in conversations about diabetes. My examination of contextualization practices in relation to me turned my attention to the importance of other contextualization practices taking place in how people were talking about diabetes.
To continue along this line of analysis, I offer in this chapter a comparison of two performances of the same story: one shared by Bill Thompson during a story circle
(described in more detail below) and one presented by Thompson during an interview with me in his home almost two months later. Richard Bauman writes that in the study of context, it is worthwhile to use “the text itself as a point of departure, and allowing it to index dimensions of context as the narrator himself forges links of contextualization to give shape and meaning to his expression” (1992:142).34 Such an approach orients the formal analysis of performance texts to the agency of the performer, acknowledging how the performer embeds interpretive frameworks into the performance based on his or her assessment of the social and cultural world of the performance encounter. Similarly interested in the performer’s influence on performance texts, Patrick Mullen (1981),
Richard Bauman (1986), and William Schneider (2008) have examined the ways
34 See also Bauman (2004:33).
72 performers adapt the stories they tell to accommodate shifting performance situations.
Schneider notes that looking at stories and their retellings helps us to “recognize how each new narration bears the mark of the present and a particular reason for telling”
(2008:1). In other words, looking at similar performances in different contexts can offer valuable opportunities for examining the different modes of contextualization embedded in each performance.
Thompson’s two storytelling performances share the following plot points:
• He had a family history of diabetes and its resulting complications
• He was diagnosed with diabetes in March 2001
• He was scared he was going to die as a result of his diabetes
• He started only eating foods he could cook on his George Foreman grill
• His hemoglobin A1c went down from 13.0% to 6.0%
• His doctor asked him how he had gotten his A1c down so much, and he
became angry
• He started having conversations with people with diabetes in his living
room
• He became involved in community health issues
These similar plot points are ordered differently in each performance context, reinforcing
Kristin Langellier and Eric Peterson’s assertion that “Timing and situation inform and constrain content-ordering; an event’s tellability is variable and changeable” (2004:59).
Additionally, some key details from the performance during the story circle are not present in the story he performed during my interview with him. During our interview,
Thompson framed his personal story within a broader narrative of racism and health 73 disparities, presenting his own experiences to demonstrate the need for the kinds of
community work he was doing. During the story circle, on the other hand, he used an
expanded version of the same story to enact the community work he described during the
interview– presenting his story not just as a model for adopting healthier lifestyle habits
but for how to engage critically with institutional sites of knowledge transmission.
In this chapter, I explore how the modes of contextualization he employed in the
immediate context of the story circle created interpretive frameworks for the other
participants, working both to construct and critique the authority of specific networks of
knowledge transmission. Through an examination of the modes of contextualization in
this performance context, I argue that the story became a means by which he both
provided metacommentary on different networks of knowledge transmission and
constructed community networks more broadly as a valuable resource for others in their
struggles with the disease.35
I will first present his performance during the interview, identifying key modes of
contextualization he embedded in this performance before I turn attention to those
employed in the story he shared during the story circle. Looking at these two telling side by side reveals how the story was adapted for each performance context – an interview with a young, white, female researcher and a storytelling session for African Americans whose lives have been affected by diabetes.
35 This analysis focuses on the framing practices connecting what Katharine Young terms “Taleworlds” and “Storyrealms.” According to Young, the Taleworld is the realm of events taking place at another space and time, while the Storyrealm is the realm of discourse at the time of the story’s telling, “part of the intersubjective world of sociality and its communication” (1987:16). Examining the discursive actions taking place at the boundaries of these two ontological realms heightens our understanding of how indivuduals put stories to use in social interactions. 74 The Interview – May 9, 2009
In Chapter 2, I examined excerpts from this same interview where I encountered
my embodied presence being used as a communicative resource in Thompson’s challenge
to diabetes-related stigma. While in that chapter I focused more on how my experience
with Thompson helped me to rethink practices of reflexivity in my own work, I want to
focus here on the work Thompson was doing to contextualize the story that he shared
with me during the interview. Below, I present the transcription of an excerpt from the
interview that includes the same personal narrative that Thompson told during the story
circle almost two months before.36 This excerpt is divided into three sections. The narrative itself is in Section 2, though I have included the other sections to highlight this
narrative’s contextualization in the interview encounter and the different framings of
similar content in both tellings. The interview transcription begins with Thompson’s
response after I asked him about his impressions of Robbie McCauley’s performances as
well as how they might contribute to the kind of community work he was already doing.
Section 1:
BT: Sheila, I tend to speak with a voice that deals with issues of African
Americans and health ((SB: mmhmm)) because everybody else deals with their
particular concerns ((SB: yeah)) and the African American voice as it related to
chronic disease is really underrepresented ((SB: yeah)) and what I think that
36 Since I presented key background information about that interview in Chapter 2, I will not repeat that information here. 75 people like Robbie and people like myself do is bring a lot of attention to chronic
disease that affects African Americans, not minorities ((SB: mmhmm)) but
African Americans, because when you look at the conditions of chronic disease
like diabetes, African Americans are the leaders in terms of the prevalence of the
disease, and the morbidity and the mortality of the disease. It’s the worse thing,
you know, when you deal with cardiovascular, diabetes, stroke, cancer, and all
those categories African American people have the highest rate, ((SB: yeah)) you
know, and its not a minority issue its an African American issue, we all are
affected by those diseases ((SB: yeah)) but the prevalence and and the
comorbidity factor is highest among African American people ((SB: yeah)).
Thompson was clearly aware that he was being interviewed, and he recognizes that his audience was not just me but the “public” to which I would eventually be presenting his words. From the beginning of our interview, he situated himself as someone speaking on behalf of the African American community about the health disparities that African Americans faced. Consider, for example, the first words in the excerpt above: “Sheila, I tend to speak with a voice that deals with issues of African
Americans and health.” With these words, he framed himself in a representative role, speaking not only from his personal point of view, but the point of view of the African
American community. As he continued, he further emphasized his role as representative by repeating “African American” seven more times in this section. Additionally, describing the importance of his work, he spoke to me in a reporting frame, where he was reporting facts about African Americans’ experiences with health disparities. His word choices – “chronic disease,” “prevalence,” “morbidity,” and “mortality” – invoked an
76 institutional domain and minimized intertextual gaps between what he was saying and
official sources of information, thereby enhancing his authority in this frame. 37
As the interview continued and he incorporated his own personal experiences into
the discussion, three separate perspectives became apparent:
His narrating self, marked by the present tense and the pronoun “I”
His experiencing self, marked by the past tense and the pronoun “I”38
The representative mode, marked by the pronouns “we” and the general
“you,” representing the experiences of African Americans more broadly
Charles Briggs conducts a similar type of analysis of the opening lines of an address by
civil rights activist, the Reverend Benjamin F. Chavis, Jr. at Vassar College (1993b). 39 In looking at how Chavis wove the narrating and experiencing selves together, Briggs draws on the concept of narrative evaluation. This concept was notably introduced by Labov and Waletzky as “that part of the narrative which reveals the attitude of the narrator toward the narrative by emphasizing the relative importance of some narrative units as compared to others” (1967:37); later, Labov showed how evaluation works to make visible the overall point of the narrative as a whole (1982:226).
37 I borrow this term “intertextual gaps” from Briggs and Bauman’s 1992 article “Genre, Intertextuality, and Social Power.”
38 See Cohn (1978) for a more extended discussion of the narrating self and the experiencing self in literary analysis.
39 Rather than the narrative self and the experiencing self, he uses the terms “entextualizing self” and “entextualized self,” both representing a personal mode of storytelling, Examining how Chavis established his own credibility through the interaction between the lecture and narrative modes in this address, Briggs explains: …the self established in the lecture mode is split into two distinct personae in the narrative. In addition to the entextualizing self that produces the discourse, Chavis created an entextualized self that stands as the center of both the events represented in the narrative and their interpretation. The entextualizing self is charged with the task of interpreting the relationship between the entextualized events and the entextualizing event… (1993b:55) 77 Like Chavis’s, Thompson’s presentation of the narrating self and the experiencing
self in the following section of the interview worked to draw connections between the events recounted and the interview in which the story is told. Through evaluative statements embedded in the narrative he shared about his own experiences with the disease, Thompson framed his personal experiences as evidence for the broader narrative of health disparities he was ultimately trying to convey. In the transcription of Section 2
below, the three perspectives are marked: the narrating self is in bold, the experiencing
self is in italics, and the representative mode is underlined. The underlined phrases, I
would argue, are evaluative statements that make clear the overall point of his story within the specific context of the interview. These are not the only evaluative statements present in this transcription, and I will return to the (meta)communicative functions of other modes of narrative evaluation below. At this point, though, I wish to draw attention to how the three perspectives of the narrating self, experiencing self, and representational
mode were situated in relation to one another in this section of our interview.
Section 2:
SB: You had mentioned during the story circle your part in getting the Near East
Side Healthy Lifestyle Center started, so those were the types of issues you were
interested in addressing, right?
BT: Well, I think when you look at, when I first got involved in the whole
community health piece, I got involved with it myself because I was a diabetic
78 myself. I was newly diagnosed in March of 2001 and in that eighteen months
that I first was diagnosed with diabetes, 5 people that I knew well who had
diabetes died ((SB: hmm)), and I was like, “What the heck is this disease?” and
“I’m goin’ to be messed up,” and I was really trying to understand how diabetes can, and in the African American community, we tend to think of diabetes in
ways that we’re goin’ to get it eventually, type 2 diabetes, and as a result of that,
we kind of accept the morbidity factor, blindness, kidney failure, as part of the
disease, and we have never really considered how those things are preventable,
the morbidity factors are preventable, even diabetes, type 2, is preventable. We
don’t look at it that way, and so for me, once I became a diabetic, I uh I wanted to figure out a way to stay healthy, and once I figured out a way to stay healthy, then
I wanted to tell my friends how to stay healthy, and really, it was really a kind of conversation I was having in my living room with guys and folks who were diabetic, tryin’ to figure out how to stay healthy, and the first thing I did was um bought a George Foreman, and I cut, my slogan was if George Foreman didn’t cook it, then I didn’t eat it. Everything I did, chicken, vegetables, fish ((SB: mmhmm)) everything I cooked on that George Foreman grill, I cut all the fat out of my diet, and my hemoglobin A1c when I was diagnosed was 13.0, and after 6 months my hemoglobin A1c was down to 6.0, and I was like, “Damn!” And when
I went back to my doc, he said, “Bill, how did you get it down like that?” and I was pissed off that he asked me that question, ‘cause I would have assumed that he would have been able to help me get it down ((SB: mmhmm)). No, he wasn’t any help, and so I tend to look at chronic diseases like diabetes more we don’t
79 have to accept what Robbie talks about in her plays. I think her voice is
important, but I think the voice that’s even more important is that just because
you’re diabetic doesn’t mean that has to happen to you.
Much of the rhetorical work Thompson did in this section involved drawing explicit connections between the experiences of his experiencing self and the larger plight
of African Americans. For example, toward the beginning of his presentation of his
experiencing self, he interrupted himself mid-sentence to describe African Americans
more generally. As he returned to his experiencing self, he used the phrase “and so” to
show a clear connection between what he personally experienced and what is typical
among African Americans. We encounter the phrase “and so” again as he brings the
story of his experiencing self to an end. What I find most significant about this moment
in his performance is how his experiencing self and the representational mode were
woven together so that the line between the two became blurred. Explaining the
significance of his past experiences to the present moment, he connected his experiencing
self simultaneously with his narrating self and the communal mode he sought to
represent. By integrating these perspectives in this way, he demonstrated at the level of
language what he had told me earlier: he was speaking as a representative of the African
American community. His use of both “we” and the general “you” in the communal
mode, I believe, also communicated the different roles he has taken on as he works on
behalf of this community. His use of “we” pointed to his role of advocate, enacted during
the interview, and his use of the general “you” pointed to his role of educator, which I
will show he enacted more prominently in the story circle described below.
80 As the interview progressed, I asked him about the source of the idea of
inevitability he described. His response to this question further reinforced the blurred
boundary between his experiences and experiences among African Americans more generally. Since he was not telling a specific story at this point, we no longer see a
significant distinction between the narrating and the experiencing selves. Thus, in the
transcription of Section 3 below, I will underline points where he spoke in the representation mode, and I will italicize points where he spoke in the personal mode.
Section 3:
SB: Where do you think that kind of idea stems from, that it’s inevitable, that all
these things are inevitable? Does it come from the doctors?
BT: It comes from our own personal history with the disease, you know, both of
my grandparents, my grandmother on, both of my grandmothers died from
complications from diabetes, um stroke related to diabetes, my mother’s mother,
my grandmother that was a real matriarch in our family, she uh was a double
amputee and so, you know, we see the consequences in our own family, and I
think it has to do with the way that we are given treatment. We are treated at the
worst stages of chronic disease as opposed to addressing the disease early on.
In a similar way to how he drew explicit connections between his experiencing self and
the communal mode in Section 2, in Section 3 he drew explicit connections between his
81 personal family history and a typical experience among African Americans more
generally. Through phrases like “you know,” and “I think,” Thompson was connecting
the information conveyed in both the personal and communal modes to the present moment, to the communicative interaction in which he and I were participants. Through the rhetorical strategies he employed in all three sections, then, he accomplished the following: First, he constructed himself as a representative of the African American community. Based on the authority of this role, he also used his personal experiences to reinforce his larger argument that the health disparities of African Americans result from clear racial inequalities.
In this setting, an interview with a young, white researcher from the university, he used the representative mode to connect his experiences to a larger narrative of racial inequalities, situating himself as a representative of this same community. His use of the pronoun “we” worked to tie his experiences back to the reporting frame, not to the setting in which the story was told. In his performance during the story circle, however, working more as an educator than an advocate, he employed alternate modes of contextualization to inspire changes in people at the individual level. Through an examination of the modes of contextualization embedded in this storytelling performance, I will look at his performance at two levels:
• How he created connections between himself and the other participants in
the situated context of the story circle
• How he constructed community-based sources of information more
broadly as authoritative and thus valuable resources for the other
participants in the story circle
82 Let us now look at this performance more closely.
Story Circle – March 12, 2009
Has your life been affected by diabetes? If you or someone close to you has
diabetes, come share your experiences with others in a diabetes story circle led
by diabetic performance artist Robbie McCauley. These story circles provide an
informal setting where you can tell your own stories and reflect on diabetes’
relationships to people of color. Ms. McCauley draws upon the stories shared in
these sessions in her performance of SUGAR, where she examines her own
struggle and survival with diabetes as connected to slavery, war, work, romance,
and food.
On March 12, 2009, twenty-three people gathered at the Ohio State University
Department of African American and African Studies Community Extension Center in
response to this announcement. 40 Three participants were community activists and
educators highly involved in health education efforts among the African American
community in Columbus. Others were community members who were on the Center’s
email listserv. Some were employees at Ohio State who were encouraged to attend by
40 According to its website, “The Community Extension Center provides community outreach and education programs designed to enhance the educational opportunities of students and improve the quality of life for people who live and work in the neighborhoods near and around the center and Columbus’s urban communities.”
83 friends who were organizing the event. Still others were clients contacted directly by community health educators and urged to take part in the story circle.41
Since the story circle took place between 6-8 PM, the Center provided a catered
buffet dinner of chicken skewers, baked fish, steamed vegetables, rice, rolls, and mixed
fruit. Several small tables were arranged into a large rectangle and, once people made
their way through the buffet, everybody took a seat around it, facing inward. Though
most did not know what to expect when they entered the door, a couple of participants
had taken part in McCauley’s story circles before. Once everybody was settled around
the makeshift “circle,” McCauley introduced herself and what she thought to be the
purpose of the story circle. She explained:
We want to think of ourselves as a circle of conversation. The way this works,
and it works in different ways, is to tell stories about, around the subject of
diabetes. I would start by saying that everyone has different stories, or dramas in
their lives about diabetes, whether you have it or not, whether you admit to having
it or not [slight laugh] ((murmuring responses from other participants)), whether
folk you know have it, whether you want to talk. I’ll start because this was called
in relationship to the performance or the the the uh drama that I’m going to do
tomorrow [referring to her performance of Sugar], but also in relationship to
yourselves and to the community, so this is the way I’ll start, and I think that uh
we can begin in either direction, but one of the uh and I don’t like to call them
rules, but one of the ways of doing a story circle is when someone is telling their
story, everyone else listens, and at the end we cross talk, but knowing ourselves
41 I was the only white participant in this story circle. 84 [laughing], we know that someone’s gonna want to drop in to someone else’s
stories. Let’s try to listen to one person’s story and then we go to the next…
In this introduction, McCauley described what was to follow as a kind of semi-structured
storytelling session. While there were no “rules,” all participants could expect to have a
respectful audience while they shared their experiences. Unlike other sessions I attended,
McCauley did not identify a unifying topic.42 Rather, she started the session by asking
people to share “something in relation to diabetes.” This introduction provided an open-
ended framework for how people could participate in this storytelling circle. McCauley’s
stated purpose of the circle was for people to share their experiences, and the
announcement publicizing the event indicated that she would draw upon the shared stories in her performance piece. As we made our way around the circle, though, it became clear that people brought their own additional expectations regarding the purpose of the event.
One woman indicated that she came for a sense of support: “I do feel like I have to surround myself with people, with positive people. It does make a difference for me.
Feeling other people’s stories does make me stronger.” Some came to learn more about the disease. For example, one man described his father’s experiences with the disease.
He explained how after his father was diagnosed, he did everything the doctors told him to do. He started to exercise and eat healthier foods, trying his best to live well. Despite these efforts, his father had passed away the previous year. He ended his story with a question for the group as a whole: “How did it happen?” Another woman, whose six year old granddaughter had just been diagnosed with type 1 diabetes, explained that she
42 Unifying topics she had used in the past included “Describe a dramatic experience you’ve had related to diabetes” and “How did you figure out you had it?” 85 was there to learn how to cook foods that her granddaughter could eat. Yet another person explained that he was there to learn about the disease because he was not satisfied with the information he was getting from his health care providers:
…I had 4 family members die of sugar. I don’t have it, but I go to the VA every 6
months. The eye doctor asks me if I have it, and I look at the screening and they
tell me I don’t have it, so I’m here to learn more about it, since they’re not telling
me. I’ve got some tingling in my toes, stuff like that ((What?!)) so I’m just here
to learn about it.
Still others came to teach. Three of the participants were community members who were already involved in community education efforts for African American residents of the near east side of Columbus, where the AAAS Community Extension
Center was located. In fact, all three had been actively involved with the Near Eastside
Healthy Lifestyle Center (NEHLC), which had just closed a few months before in
January 2009 due to a lack of funding. The NEHLC had been established in response to a 2004 Columbus Health Department survey showing that residents of the near east side of Columbus were disproportionately affected by diabetes and its complications. Its goal was to provide access to health services and educational programs to the predominately low-income African American residents of this neighborhood. The staff of the Center included lifestyle coaches, African American women from the community who work with the clients of the NEHLC at an informal, personal level. Two of the story circle participants were lifestyle coaches who had worked at the Center; another was Bill
Thompson, introduced in Chapter 2, who had played a valuable role in opening the
Center and was actively involved in implementing healthy lifestyle programs in the
86 neighborhood. The story circle, bringing together African American community members around the subject of diabetes, provided these individuals with a venue for continuing the educational work they were already doing in the community.
In this story circle, Thompson presented a longer, more expanded version of the personal narrative he told during the interview. In contrast to the interview, where he incorporated his personal experiences to enhance the point he was making in the reporting frame, his whole performance in the story circle was framed as a personal experience narrative. In the transcription below, I have divided his narrative into three sections. The first section focuses on his diagnosis and his resulting depression. The second section focuses on how he came to take care of himself, and the third section focuses on how he started sharing his knowledge with others. Four perspectives are marked: the narrating self is in bold, the experiencing self is in italics, the representative mode is underlined, and personal background information is in plain text.
Section 1:
My diabetes story, I make a, I’ll change it since I last participated. I have a
family history of of diabetes, typically we talk about family history being the
precursor of chronic disease. I have grandparents who had diabetes, my mother
has diabetes, and I have a brother that has diabetes, so diabetes has always kind of
been a part of our family. The unfortunate part about diabetes in our family is
that typically we have died from the complications of the disease. My mother’s
mother was a double amputee and she died when she was in her seventies. My
87 grandfather he died in 1978 at the age of 62 from a from a cardiovascular disease
but he was also diabetic, overweight, the whole thing, so when I was diagnosed
with diabetes at the age of 41 back, it was back in March 2001, my real thought
about the disease was that I was going to die because everybody in my family had
died from being diabetic, that was kind of what I saw, and I remember the doctor
I had at the time uh when he diagnosed me with the disease he told me, “You’re
going to die from the complications from the disease,” so I I began to think about
my life at the age of 41 someone had cast a death sentence on me and I was a
father of 4 and I was like, “This is kind of jacked up.” ((quiet laughter from other
participants)) So for two and a half or three weeks I would say I was in a a
depression, and it was very difficult for me to figure out how to take care of
myself.
While in the interview Thompson was using his personal experiences to describe community understandings of the disease to an outsider, in this section we see him invoking community understandings to create connections with the participants in attendance. For example, whereas during our interview he only mentioned his family history after he shared his own story and I asked him a specific question about it, during this story circle he began his story by offering this background information. During the interview, he presented his family history as representative of the African American community, while I would argue that during the story circle he started with his family history because of its typicality in the community, so that others would see themselves in his story. Unlike his description of his family history during our interview, in which he used it as evidence for how racial inequalities create health disparities for African
88 Americans, during the story circle he offered no generalizing interpretation of his family history from the perspective of his narrating self. In fact, there was only one line where he referred explicitly to a more general community experience of the disease and employed language meant to invoke more institutional discourses (i.e., “precursor” and
“chronic diseases”). In contrast to the interview, he was more interested in enacting community than representing it.
Section 2:
So then what happened was, I say it was the spirit of the Lord, but in that the
spirit told me how to take care of myself, and so, how many people in this room
are diabetic? ((most people raise their hands)) When I was diagnosed with
diabetes, my hemoglobin A1c was 13.0 ((“It was WHAT?”)) 13.0, and so I had
never been that sick in my life, so I had to figure out [coughs] excuse me, so I had
to figure out how to take care of myself, so I was in depression, couldn’t figure it
out, and the spirit came on me and said “This is what you need to do.” And so
the first thing I went and did was I went out and bought a George Foreman grill,
and my thought process was if George Foreman didn’t cook it, then I didn’t eat it.
((murmurs from other participants in the story circle; “All right!”)) I didn’t eat
rice, I didn’t eat potatoes, and I ate vegetables and I cooked everything on my
George Foreman grill. Then I started and got myself with some really intense
exercise. And I used to love to smoke, but just cigars, and I remember asking my
doctor who had passed a death sentence onto me, could I continue to smoke
89 cigars, and he said, “How many do you smoke?” and I said “2 or 3 a month,”
and he said, “Yeah, that’ll be fine.” Well, when I started investigating how to
take care of myself, one of the things I learned was not to WHAT? ((several
people said, “smoke!”)) not to smoke and not to be around people who WHAT?
((several people said, “were smoking!”)) who SMOKED, so I quit that, and even
today I love a good cigar but I don’t smoke cigars, so in the course of 6 months
I started feeling better, working out, eating on the George Foreman, and I went
back to the physician, they took my blood and my hemoglobin A1c was 6.0. And
so he asked me this question, he asked “So Bill, how did you get your hemoglobin
AIC from 13.0 to 6.0 in 6 months, and not be on insulin?” And his question really
upset me because he should have told me how to do that ((“uh-huh,” “mm-
hmm”)) but he didn’t do it, so I had to find out how to take care of myself.
In this section the main theme of the story shifted from depression to action where he learned “how to take care of myself” (a phrase repeated four times), and Thompson attributed that change to the spirit of the Lord. The centrality of the Lord’s role was further highlighted when he paused to offer a summary of his story so far: “so I had to figure out how to take care of myself, so I was in depression, couldn’t figure it out, and the spirit came on me and said ‘This is what you need to do.’” In the rest of his section, he described the specific actions he took in response to this external force of inspiration.43
The Lord’s role is notably different in the two storytelling performances I have
presented in this chapter. Without undermining his belief in how the spirit of the Lord
43 This story was in part, then, about a personal revelation from God. For an in-depth study on narratives of personal revelation, see Tom Mould’s study of such stories in the Mormon community (2009). 90 inspired him to make changes in his lifestyle, I want to draw attention to why he might
have put so much emphasis on this detail of the story in this particular telling. Bringing
this sacred element into this otherwise secular discussion, his personal narrative began to
carry formal and thematic characteristics of other performance genres with which story
circle participants may already be familiar, specifically those related to religious
testifying.
For example, after the Lord entered his story, Thompson began to enact a kind of
call and response, a prevalent formal feature of African American sermon styles.44 As
Briggs notes in his analysis of Reverend Benjamin F. Chavis’s address at Vassar college,
“such subtle uses of African-American sermon style can prompt a discursive shift for
African Americans who have participated in churches in which this style predominates”
(1993b: 66).45 While this shift in style is short-lived in Thompson’s performance, it
works not only to bring others literally into the performance but also to invoke spaces of
community building.
The structure of his story of transformation resonates with other characteristics of religious testifying. In his analysis of conversion narratives, for example, Patrick Mullen describes how “conversion narratives often contrast the lowly state of the sinner with the
44 See, for example, Davis (1984), O’Foran (2006), and Sutton (1988). See also Lincoln and Mamiya (1990) and Nelson (2005) for studies of African American churches more generally.
45 Indeed, performances of testimony have been shown to be a powerful means for drawing together communal and personal modes. In the words of Jerrilyn McGregory, “a testimony is not a one-dimensional musing between one’s self and God, but a means of addressing and morally engaging the members of the performance community” (1997:109). While not studying African Americans in particular, Patrick Mullen also examines the personal and communal modes invoked in the sharing of sacred personal narratives (1982/3).
91 exalted state of the sacred” (1992:92).46 While Thompson’s words do not communicate
an experience of moral transformation, he does describe a shift away from engaging in
behaviors harmful to his body. By indexing genres of testifying through the detail of
personal revelation, he implicitly provided a narrative framework for personal
transformation that people may have been familiar with from other contexts of their life
and thus more ready to identify with.
Section 3:
So what happened was I started connecting with folks who had been diabetic much
longer than I had and who were struggling with the disease, and they were coming to
me for advice. And so we would get together in smaller circles, primarily African
American men, but we would talk about the disease and how we feel. And a good
friend of mine, he had been diabetic for about 10 years and he was losing his sight in
one of his eyes and his opthamologist wanted to start sticking steroid injections into
his eyeball to save his eye. And I asked him, I said “Listen. Everything I’m learning
about this disease suggests that if you’re able to begin to do certain things in your life
you can s-, you can’t necessarily reverse it, but you can stop the progression of the
complications of the disease.” So I told the guy “Trust me. I’m not a physician, but
try doing what I’m doing for the next 8 weeks,” and he trusted me enough that when
he went to his opthamologist, not only did they not want, he called me from the
46 See also Mullen (1992:91-93, 184-187). For examples of conversion narratives collected from African Americans, see Johnson (1960) and O’Foran (2006:167-183).
92 parking lot and he said “Thompson, not only did he not have to put the steroid
injections in my eyeball,” he said, “but that eye vision is 20-20,” and he said,
“Whatever it is that you’re doing people don’t know about.” And so um I started
thinking more and more about all this and I I went to the Diabetes Association here in
Columbus, and I was kind of upset with them because they weren’t in the black
community trying to help folks where I saw, so I participated and became one of their
people to help do marketing stuff and [unintelligible in recording], and I had my own
passion to try to help black folks live healthier and I knew that the disease itself as it
relates to diabetes wasn’t about taking medication. It’s about how we live.
((affirmative responses from other people))
His story ended with a description of how he came to work on behalf of the
community as both an advocate and an educator, serving as an external force that
inspired change in others. As he quoted himself talking to his friend, he did so from
the position of his present authority looking back to the past. In this way, the
generalized “you” in his quoted speech had potentially two referents: the friend he is
talking to within the frame of the story as well as the people who were listening to
him tell this story. The final line, underlined above, further brought his past
experiences to bear on the present moment as it ended in the communal mode,
marked by “we.” The tense shift from past to present in the final line further
emphasized the relationship of his story to the participants in the storytelling session,
a relationship that was affirmed by the responses of these participants.
93 So far, I have sought to identify some of the strategies Thompson employed to
create connections between the story he was sharing and the participants of the story
circle. By the end of his story, he had positioned himself as an educator, working to
inspire people to enact healthy lifestyle changes in their own lives. His authority to
speak in this role, however, came not from any official title he had but from his own
experiences with the disease. Having experienced and overcome the uncertainty and
fear surrounding the disease, he hoped to use his story to help people in the story
circle live healthier lives; at the same time, as I will highlight below, his story
evaluated different types of communication networks. Thus, he established several
levels of interpretive frameworks through his performance of his story. He was not
only presenting himself as a role model in the immediate setting of the story circle, he
was also using his story to offer metacommentary on the credibility of professional
and alternate sources of information about healthy living more broadly.47 It is to
these broader modes of contextualization that I now turn.
Talking About Talk
In both the interview and the story circle, a key moment in the story occurs when
Thompson’s doctor asks him how he managed to get his hemoglobin A1c down to 6.0%.
In the story he shared during the interview, this event was the only one he recounted
using the reported speech of another – “Bill, how did you get it down like that?” In his
story during the story circle, this event was also marked by direct discourse reported
47 I approach metacommentary in this analysis as one form of narrative evaluation, one that evaluates the usefulness of sources of information that make claims for credibility. 94 speech: “So Bill, how did you get your hemoglobin A1c from 13.0 to 6.0 in 6 months,
and not be on insulin?” As I discussed in the previous chapter, reported speech offers the narrator the opportunity to use the authority of the present moment of the performance to evaluate both the speaker and what is communicated.48 In his story circle performance,
Thompson built up to this moment dramatically, making it the third of a series of three
phrases spoken directly by this doctor. The first time the audience encountered the
doctor in the story, he was telling Thompson, “You’re going to die from the
complications from the disease.” Except for identifying him as “the doctor I had at the
time,” indicating he had since switched to another physician, Thompson offered no
metacommentary of this statement at the time it was presented as reported speech.49 The second time the audience encountered this doctor, he was telling Thompson it would be fine for him to smoke two or three cigars a month. This time, Thompson did respond within the reporting frame to the doctor’s words. Speaking from the point of view of his narrating self, he identified the doctor specifically as one “who had passed a death sentence onto me” and called attention to his own research revealing that the information the doctor presented was wrong: “Well, when I started investigating how to take care of myself, one of the things I learned was not to WHAT? ((several people said “smoke!”)) not to smoke and not to be around people who WHAT? ((several people “were smoking!”)) who SMOKED, so I quit that.” By the third time Thompson presented the
48 Vološinov’s notable work on reported speech demonstrates how such forms indicate the "steadfast social tendencies in an active reception of other speakers' speech" (Vološinov 1986:117). Focusing more on practices of storytelling, Patricia Sawin similarly notes that “the point of a story full of reported speech may be to exemplify proper and improper relationships of speech to action, as much as to describe and comment upon the more obvious extradiscursive elements of the story” (2004:93).
49 By the time the audience encountered the third instance of reported speech, however, the authority of the doctor was sufficiently challenged as to call into question the accuracy of this statement. 95 words of this doctor, this time asking him how he got his hemoglobin A1c to come down
so low, the audience finally saw an explicitly negative evaluation coming from
Thompson’s experiencing self: “And his question really upset me because he should have
told me how to do that.” While the story he shared during the interview did not include these first two cases of reported speech from the doctor, his metacommentary on the doctor’s words regarding his A1c was strikingly similar: “And I was pissed off that he asked me that question, ‘cause I would have assumed that he would have been able to help me get it down.” Through such evaluative statements, Thompson called explicit attention to how his doctor failed to provide him with helpful information for staying healthy. Given the many differences in the two tellings of this story, the consistent presentation of both the doctor’s response to his A1c and Thompson’s reaction to his words indicates the significance of this moment not only for Thompson’s experiencing self, but also for what he was trying to communicate by sharing the story with others at the moment of narration. In both tellings, Thompson used this event to demonstrate his moment of realization that he could not count on his doctor, that the doctor was not necessarily a reliable source of knowledge.
In the particular performance during the story circle, Thompson offered several more instances of reported speech through which he evaluated the credibility of the speaker and the health information being communicated. Notably, alternative (and ultimately positive) sources of information were presented in contrast to information conveyed by physicians. For example, his inclusion of the Lord’s communication with him in Section 2 points to one alternate source of information he encountered amidst his struggle to figure out how to live well with diabetes. Earlier, I discussed how his
96 narrative presentation of his interactions with the Lord indexed other genres – in which
personal transformation is expressed – and other settings – where stories are shared and
communities are formed. Unlike these other genres, however, his personal interaction
with the Lord was not the central focus of the story. While it did inspire him to make
lifestyle changes, true personal transformation was not effected until his experiencing self
explicitly acknowledged the doctor’s failure to help. It is significant that reported speech did not include exactly what the Lord told him to do, for the content of the Lord’s speech was less important than how it was presented. Viewing reported speech as “constructed dialogue” (Tannen 1989) I argue that Thompson’s reporting of the Lord’s speech set up
an implicit comparison with the words of the doctor, a comparison that worked to
evaluate negatively the value of the doctor’s words. The directly quoted discourse from
the Lord – “This is what you need to do” – contrasted with his doctor’s words as quoted
throughout the story, which work to discourage, misinform, and ultimately show ignorance. The words of the Lord, on the other hand, did what the doctor’s words failed
to do – not necessarily because the Lord is all-powerful but because the doctor was
incompetent. Through the implicit comparisons Thompson drew between these different
domains of knowledge transmission, an underlying message emerged throughout
Sections 1 and 2: don’t put too much faith in doctors.
As the story progressed into Section 3, relational networks emerged as a valuable
source of information, once again situated in contrast to information coming from the
doctor. Thompson began this section by drawing a connection between the setting of the
story and the setting of its telling to highlight the potential for the story circle to become a
space where valuable information was exchanged: “So what happened was I started
97 connecting with folks who had been diabetic much longer than I had and who were struggling with the disease, and they were coming to me for advice. And so we would get together in smaller circles, primarily African American men, but we would talk about the disease and how we feel.” At this point in the story, his friend was in the position he himself was in when he was first diagnosed, and as he recounted his friend’s struggles within the frame of his story, another doctor was presented. Although we do not encounter any directly quoted speech or explicit evaluations of this doctor as a source of knowledge, our earlier encounter with the other doctor makes it reasonable to believe that this doctor’s approach may not be the best one. In his telling, Bill presented himself as the external source of inspiration through community networks of knowledge transmission:
I said “Listen. Everything I’m learning about this disease suggests that if you’re
able to begin to do certain things in your life you can s-, you can’t necessarily
reverse it, but you can stop the progression of the complications of the disease.”
So I told the guy “Trust me. I’m not a physician, but try doing what I’m doing for
the next 8 weeks.”
Interestingly, at this point he explicitly contrasts himself with a physician, extracting valuable flows of knowledge from institutionally-validated identities. In doing so, he once again validated the credibility of experiential knowledge. The success of his advice is then articulated through the reported speech of his friend: “Whatever it is that you’re doing people don’t know about.”
By comparing and contrasting two performances of the same story about one man’s experiences with diabetes, I have sought to illuminate in this chapter how modes
98 of contextualization create the meaning of performance texts. While in both cases
Thompson told a tale of overcoming obstacles to fight the disease, the differences
between the two tellings point once again to the importance of discursive situations in
shaping how people talk about diabetes. During the interview, speaking to an outsider,
he spoke primarily in the representational mode, using his personal experiences to
support a larger argument he was trying to convey about the African American
experience of health disparities. The story circle, gathering people based on shared
experiences and calling for people to draw primarily on their personal experiences as they
spoke, allowed for more reflection and evaluation within the space of the story he was
sharing. Through this analysis, it becomes clear that in the discursive space of the story
circle, Thompson’s contextualization worked at two levels. He not only constructed
himself as a valuable source of information in the immediate performance setting by
invoking shared experiences with other participants; he also, through both implicit and
explicit evaluations of reported speech, highlighted the importance of community and
relational networks to fill in the gaps in institutional networks of knowledge transmission.
In the following chapter, I turn attention to these institutional networks of knowledge transmission, focusing specifically on another personal narrative of overcoming diabetes. Presented on stage by a physician at a community health education event, this performance of personal experiences varies in significant ways from those presented by Thompson, constructing different opportunities for audience engagement.
99
CHAPTER 4: Speaking as The Biggest Loser: Experience and the Paradigm of Expertise
“Diabetes and You: Today’s Challenges, Tomorrow’s Victories”
On the weekend of November 29-December 1, 2007, the Ohio State University
Medical Center hosted the second Global Diabetes Summit in Columbus, Ohio.50 The
Summit was composed of two separate but complementary events: the Scientific Event and the Community Event. The Scientific Event, with the theme “Conquering Diabetes
Frontiers with New Discoveries and Technologies,” convened scientists, researchers,
50 The first Summit took place in Nairobi, Kenya June 29-30, 2007. According to publicity materials for that event:
The purpose of the Summit is to bring together international experts from the World Health Organization(WHO), International Diabetes Federation (IDF), national health authorities, development aid and funding agencies, WDF project partners, local diabetes associations, health care providers, academics, NGOs, local, regional and global media to:
• highlight the rising prevalence of diabetes and its complications in the developing world in general and Africa in particular
• discuss issues related to prevention and care and debate who is responsible for what – individual, community, state etc.
• develop strategies to reduce the socio-economic burden of diabetes
• show through examples of ongoing WDF projects what is being done
• create a network of and regional key opinion leaders who can drive the agenda on diabetes prevention and committed global care in Africa (http://www.worlddiabetesfoundation.org/composite-1207.htm) Dr. Kwamei Osei, endocrinologist and internist at the Ohio State University Medical Center, attended the Summit in Nairobi and was responsible for bringing the Summit to Columbus, Ohio.
100 physicians, corporate leaders, and public health officials from around the world to talk
about stopping the spread of the global diabetes epidemic. The Community Event’s
theme was “Diabetes and You: Today’s Challenges, Tomorrow’s Victories.” While the
Scientific Event was composed of conversations among “experts” about diabetes as a
global problem, the purpose of the Community Event was to share this expert
knowledge with Ohio residents and to provide residents with the information to fight
the diabetes epidemic at the local level. The Community Event was co-sponsored by
several local health organizations, such as the Ohio Commission on Minority Health, the Columbus Medical Association Foundation, the Ohio Department of Health, and most of the publicity was done through these various organizations. Approximately
650 community residents of Central Ohio attended, including the employees and clients of the co-sponsoring organizations.
In her introductory remarks, Dr. Dara Schuster of the Ohio State University
Medical Center explained that the purpose of the Community Event was to spread
knowledge and awareness about the disease: “We are trying to get anybody and
everybody talking and thinking and managing and educating about diabetes. So I’m
hopeful when you leave here today, because all of us know somebody with diabetes, that
you will go out and talk to your friends about diabetes and about a lot of the things that
you’ll learn here today.”
Cheryl Boyce, Executive Director of the Ohio Commission on Minority Health,
explicitly called to action the generalized “you” in the event theme (“Diabetes and You:
Today’s Challenges, Tomorrow’s Victories”), using community invocations to call the
audience to arms in the fight against diabetes: 101 The fact that you are here today is cause for celebration. It is time for us to band
together to do what we can do…today is a day of us coming together for
affirmation, to renew our commitment to go into our communities and work for
our people. Some of you are diabetic, some of you are caregivers, all of us know
someone who has been ravaged by this disease. This is our time to put new
instruments in our arsenal to go and save our people. I will end this in the way I
end all my presentations: This is our charge. Go in search of our people, love
them, learn from them, play with them, and serve them. Begin with what they
have and build on what they know, but the best leaders when the work is done and
the task is accomplished, the people will all remark, “We’ve done it ourselves.”
God bless you, have a wonderful conference, and go back into the vineyards and
labor on behalf of our people.
Through these words, Boyce framed diabetes as a community, not a personal problem,
presenting community engagement as a necessary tool in combating the disease.
The Global Diabetes Summit Community Event offers a valuable site for
exploring discursive interactions between expert and lay systems of knowledge about
diabetes. 51 Participants in the Scientific Event, identified as “experts,” were presented as
the people who carried the knowledge that could potentially slow down and even stop the
spread of the disease at the global level. Within the space of the Community Event, they
would pass some of that knowledge on to community residents, who were then charged
with the tasks of 1) enacting healthy lifestyles themselves that would prevent such
51 Wheatley, drawing upon the work of Giddens (1991) in her ethnography of heart disease, defines expert systems as “institutional and professional domains in which expertise is produced and communicated” (2006:4).
102 conditions as obesity and diabetes and 2) sharing the knowledge they gained at the event,
serving as educators within their own relational networks.52 As Dr. Theresa Long, the
Commissioner for Columbus Public Health, explained, the good news is that, thanks to
the participants in the Scientific Event, there are constantly new information and tools
available in the fight against diabetes. The bad news, however, is that people are
unaware of the disease and its effects, and thus do not know to take advantage of those
tools. A crucial role individual community members can play in the fight against diabetes is to help spread awareness about both the disease and how to stop it.
Speakers in the Community Event stood on stage in the front of a large ballroom
in the Columbus Convention Center, while members of the audience sat around tables set
up throughout the room. After the introductory remarks, the morning program included
a panel discussion and a series of lectures given by participants in the Scientific Event.
During lunch in the ballroom, Robbie McCauley performed her one-woman show Sugar, and in the afternoon there were a series of smaller concurrent workshops on topics including “Special Concerns When Raising Children with Type 1 Diabetes,” “Update of
New Oral Medications Type 2 Diabetes: Why Combining the Pills,” “How Am I Doing with My Diabetes? Understanding Your Numbers,” and “Diabetes and Heart Disease:
Why Should You Worry?” After the workshops, people reconvened in the main ballroom. At the very end of the day, Dr. Jeff Levine, physician and former contestant on the NBC television show The Biggest Loser, gave the closing remarks.53 The event also
52 The relational networks identified throughout the event ranged from families to communities. 53 The Biggest Loser is a reality television show where the contestants compete to lose the largest percentage of body weight. 103 included brief exercise breaks, cooking demonstrations, and a Health Expo where people could interact with vendors and representatives of local health organizations.
The overall structure of the Community Event demonstrated a communication model that assumed a translation of information from the experts to the community members. The speaker Dr. Sam Dagogo-Jack, Professor in Translational Research and
Chief of the Division of Endocrinology, Diabetes & Metabolism at the University of
Tennessee College of Medicine, described the model explicitly in his lecture entitled
“Preventing Diabetes in US Ethnic Populations: Can It Be Done?”: “We now have scientific proof of what needs to be done to prevent diabetes. The problem is how do we translate the proof that was developed in clinical research centers to the common street level in the community?” After explaining that diabetes can be prevented through lifestyle modification, he continued:
The challenge is how we can translate this and take it out of the academic centers
and into the communities…What you’re hearing from me is information, and this
information has been buried in medical texts since 2002. It is not automatic given
the nature of knowledge dissemination for information to suddenly become
action….[Before it can be turned into action] information has to be packaged into
knowledge, and the packaging of information into knowledge is from scientific
tables to the community. [This Global Diabetes Summit] is part of that
translational process, getting us out to talk about our research, getting us out to
interact with you.
Here Dagogo-Jack situated health education as a one-way flow of knowledge from scientific laboratories to lay communities. Following the model of translational research,
104 he acknowledged that information emerging from scientific research undergoes processes of interpretation before lay community members recognize it as knowledge and use it to enact lifestyle changes. He then presented the Community Event as a site where this transformation was meant to happen.
In this chapter, I will examine the role imagined for voices of experience in this translational process, focusing particularly on Dr. Jeff Levine’s performance of his personal narrative of weight loss. I begin with an overview of the rhetorical power of the category of “experience,” as well as the increasing attention to patients’ experiences in contexts of illness. I then turn to Levine’s presentation at the Global Diabetes Summit
Community Event, focusing on how he shifts perspectives between his role as an expert and his role as a patient in his storytelling performance. In addition to showing how his performance’s evaluations of both experience and expertise does valuable work in empowering individuals to make lifestyle changes, I also identify the limitations of his performance strategy in engaging with communities experiencing structural inequalities.
Speaking from Experience
In his historical exploration of the idea of “experience,” John Jay proposes that this concept “is at the nodal point of the intersection between public language and private subjectivity, between expressible commonalities and the ineffability of the individual interior” (2005:6-7). While its specific meanings may shift over time, it consistently straddles the border between the allegorical and the personal, between the generalizable and the particular, between empathy and entitlement (Shuman 2005). In the second half
105 of the twentieth century, experience emerged as a core concept in contexts of identity
politics, in which marginalized groups initiated political movements based on shared
experiences of oppression and social injustice. Second wave feminists, for example, with
the slogan, “the personal is political,” used personal experience as a means by which to
draw strength from commonalities among individuals and to challenge dominant
characterizations working to reinforce their positions of marginalization. 54 Emphasizing
their lives as subjects in their articulations of identity, individuals invoked experience as
an alternative to impersonal, abstract categories imposed by more powerful others to
account for differences.
Of course, the use of “experience” in identity politics has drawn scholarly
criticism. Critics of second wave feminism, for example, have shown how invocations of
a common experience can obscure power differentials within marginalized groups.
Elizabeth Bellamy and Artemis Leontis address specifically how appeals to experience can be constraining even as they seek to be liberating. “For it seems to be the case,” they write:
that, despite its recent endorsements of multiplicity, heterogeneity and plurality,
the project of documenting women’s changing ‘experience’ from their own
perspectives proves to be a reductive one, whose single-minded purpose it to
record cultural variations on the recurring theme of rights trampled, power denied,
entitlements lost, voices unheard, and/or to celebrate individual cases in which
women achieve some equality to men. (1993:176)
54 The significance of “experience,” of course, did not begin here; See Jay (2005) for a historical exploration of the concept in Western intellectual thought.
106 As discourses celebrating diversity appropriate the category of experience, Joan Scott,
among others, interrogates understandings of experience as a natural category, calling
upon scholars to focus “on processes of identity production, insisting on the discursive
nature of ‘experience’ and on the politics of its construction. Experience is at once
always already an interpretation and something that needs to be interpreted” (1991:387).
When we view experience as a discursive construction, we see that invocations of
experience are not inherently counter-hegemonic, for as Sonya Kruks explains, “when
de-linked from critique or feminist politics, the account of experience can be
fundamentally conservative. For ‘given’ experience may be accepted as natural and/or
desirable when it is in large measure ideologically constructed” (2001:140). It becomes
dangerous to approach experience as somehow unmediated and separate from ideological
structures of power.
While I have been discussing “experience” in contexts of identity politics, this
category is similarly significant in contexts of sickness, both in lay and professional
realms. In the second edition of her study of pathographies, autobiographical accounts of
illnesses written from the perspective of the patient,55 Anne Hunsaker Hawkins uses the concept of experience to draw explicit connections between the domain of identity politics and the domain of illness:
Lifewritings give voice to the voiceless and insist that this voice be heeded,
hence the importance attached to autobiographies of women or African
Americans, present and past. Such writing focuses attention on groups who
have been marginalized or oppressed, articulates not only their special
55 See also Couser (1997)
107 experience but also their special values and perspective, and reminds us of
what they contribute to the culture as a whole….In much the same way,
though on a smaller scale, pathography gives voice to the patient and calls
attention to the importance of his or her experience. (1999:189)
As sick individuals find themselves dehumanized and stigmatized by institutional health
care and society at large, pathographies provide an outlet through which they can assert
their sense of self, and experience offers the authoritative grounding of these narratives.
Speaking from experience provides individuals a way to contest potential stigmas
attached to their sickness and assert identities beyond that of their diseased bodies.56
Medical professionals have also attended to the importance of recognizing patients’ experiences in health care encounters, identifying personal narratives as a significant resource in these efforts. Two influential writers addressing this topic are
Arthur Kleinman and Rita Charon.57 In his book, The Illness Narratives: Suffering,
Healing, and the Human Condition, psychiatrist and medical anthropologist Arthur
Kleinman identifies a key distinction between disease and illness.58 Disease, according
to Kleinman, is how experts interpret sickness, or “what practitioners have been trained
to see through the theoretical lenses of their particular form of practice…In the narrow
56 I am focusing my discussion here particularly on personal illness narratives shaped intentionally for public audiences, thereby shifting attention away from the alternate, sometimes therapeutic, functions illness narratives can serve for their tellers (Frank 2005). Lars-Christer Hydén, for example, highlights five different ways this genre is used, including “1. to transform illness events and construct a world of illness; 2. to reconstruct one’s life history in the event of a chronic illness; 3. to explain and understand the illness; 4. as a form of strategic interaction in order to assert or project one’s identity; and lastly, 5. to transform illness from an individual into a collective phenomenon” (1997:55). See also Bury (2001), Mattingly and Garro (2000), and Raoul et al. (2006).
57 See also Aull and Lewis (2004) for a sample of works in which physician-writers seek to bridge personal and professional boundaries by engaging the concept of “experience.”
58 See also Kleinman (1981) 108 biological terms of the biomedical model, this means that disease is reconfigured only as
an alteration in biological structure or functioning” (1988:5-6). Illness, on the other hand,
is “the innately human experience of symptoms and suffering” (1988:3). Asserting that clinicians most often focus their attention exclusively on the former, thereby neglecting the human side of their patients, Kleinman urges clinicians to place themselves in the lived experiences of their patients’ illnesses in order to gain a better understanding of their patients’ perspectives. He introduces “a practical clinical methodology in the care of the chronically ill [the essence of which] is captured by the words empathetic listening,
translation, and interpretation” (1988:228). A foundational element of this methodology
is using illness narratives to access experiences. Kleinman writes:
The illness narrative is a story the patient tells, and significant others retell, to
give coherence to the distinctive events and long-term course of suffering. The
plot lines, core metaphors, and rhetorical devices that structure the illness
narrative are drawn from cultural and personal models for arranging experiences
in meaningful ways and for effectively communicating these meanings (1988:49)
His concept of explanatory models (Kleinman et al. 1978; Kleinman 1981) plays a central
role in this methodology as well, as he encourages health practitioners to elicit patient’s
explanatory models via illness narratives so that they can identify and negotiate between
potential conflicts with the practitioners’ own explanatory models (1988:239). Within
this framework, engaging respectfully with patients’ experiences and perspectives
becomes a primary responsibility of clinicians.
Physician and literary scholar Rita Charon also urges practitioners to give
attention to patients’ experiences, introducing what she terms “narrative medicine” as a
109 corrective to some of the failings of the current health care system, as well as a way to bridge divides between doctors and patients (2006). As with Kleinman, Charon emphasizes the importance of being open to multiple perspectives present within a clinical encounter: “To know what patients endure at the hands of illness and therefore to be of clinical help requires that doctors enter the worlds of their patients, if only imaginatively, and to see and interpret these worlds from the patients’ point of view”
(2006:9). To reach these goals, she employs what she terms “narrative competence,”
“defined as the set of skills required to recognize, absorb, interpret, and be moved by the stories one hears or reads” (Charon 2004:862).
For both Kleinman and Charon, attention to narratives offers a corrective to some common problems of medical care, particularly the extraction of the person from the disease. Both naturalize narratives as valuable resources available to clinicians in order to access patients’ experiences. Such patient-centered approaches to health care are indeed necessary, and I agree that narratives provide a valuable entry point into more engaged interactions between patients and health practitioners; what concerns me, however, are the potential implications of uncritically understanding narratives as natural carriers of patient experiences. I want to bring attention to the potential implications of identifying narrative as another realm in which professionals can cultivate expertise. For example, while Charon explains that a patient’s story carries the diagnosis, she also asserts that “The patient may not know what needs to be told” (2006:66). In such a case, it is up to the health practitioner to use her narrative competence to construct a narrative on behalf of the patient, a narrative that captures the patient’s humanity and structures the medical plan of action. I do not seek to diminish the value of narrative approaches to
110 medical care, but I also do not wish to celebrate uncritically a process whereby
professionals identify and interpret a patient’s experience. What happens when, armed
with tools of narrative analysis, health practitioners presume they carry the skills to
access patients’ perspectives? What happens when medical experts speak authoritatively
about patients’ experiences? Kleinman himself expresses similar concerns in later works.
For example, while his purpose in eliciting explanatory models is to initiate conversations
with patients and to create an illness narrative whose meaning fits in with the goals of all
parties, he finds that clinicians have used such models more as checklists, thereby cutting
off productive collaborative interactions between practitioners and patients (Kleinman
and Benson 2006).
Susan Ritchie tells us that “Instead of accepting medicine’s appropriation of
humanistic discourse as a token of its breach with its own past, it is important to
investigate how its old power structures are cloaked by appropriated discourse”
(1993:208). “Engaging patients’ experiences” as appropriated discourse runs the risk of
being framed as a skill to be learned and applied rather than an entry point into
meaningful interactions, so that the beliefs can actually be “read” and “coded as clinical
artifact” (Kleinman 1997:8). Engaging experiences through illness narratives, while
offering the promise of remediating divisions between patient and physician, ultimately
depends upon what aspects of the experiences the professional deems relevant; that is, the professional’s interpretation determines the significance of a patients’ experience within the clinical context.
In my analysis of Levine’s presentation at the Global Diabetes Summit
Community Event, I want to explore how the issues described above extend into broader
111 communicative contexts. Beginning with the understanding that “experience” is a
discursive category that can be put to various political uses, I continue below by focusing
on, in the words of Bellamy and Leontis, the “rhetorical standing of experience”
(1993:180), or how public narrative appropriates experience. A productive site to start
such an endeavor is with the personal experience narrative, a concrete form experience
takes as it moves beyond the personal realm and into broader communicative contexts.59
The sharing of personal narratives always occurs as part of a rhetorical project, whether these stories are meant to construct a coherent sense of self to oneself or to others (Becker 1998; Linde 1993) or to “moralize the events they recount and seek to convince others to see some part of reality in a particular way” (Mattingly and Garro
2000:11). “Narrative,” Byron Good writes, “is a form in which experience is represented and recounted, in which events are presented as having a meaningful and coherent order, in which activities and events are described along with the experiences associated with them and the significance that lends them their sense for the persons involved. But experience always far exceeds its description or narrativization” (Good 1994:139, emphasis added). We should not approach narratives of personal experiences as pure reflections of those experiences. Telling narratives is rather a process of reduction whereby one’s experiences can be accessible to others. Viewing personal narratives in this way, we become equipped to examine critically what kind of work these narratives accomplish through their telling. I turn now, then, to the personal experience narrative offered by Dr. Jeff Levine.
59 See Langellier (1989) for an overview of approaches to the study of personal narratives. 112 Empowering Others through a Story of Success
I begin this section by exploring how the genre of personal experience narrative
provided Levine with opportunities to evaluate his own role as both a patient and an
“expert.” To highlight how he alternately positioned himself during his performance at
the Community Event, I mark points in the transcription where he speaks from the point
of view of the patient in bold. I also underline references to his status as an expert.
Levine began his talk at the Community Event by saying:
I want to thank [the organizers of the event] for asking me to come speak to you
on a topic so important to me as a family physician…When I talk on obesity I
want to remind you that I’m not here to speak to you as an expert. You’ve
heard today from wonderful experts in the workshops and the main events today.
Twelve weeks on a reality TV show does not make you an expert and
unfortunately when I went to medical school, and I’m sure Dr. Schuster will
agree, most of us didn’t have any education formally in terms of nutrition or
exercise physiology.
Through these words, he positioned himself as both a carrier of experiential and expert
knowledge. In the process, he identified some of the limits to his own status as an
“expert” on diabetes, foregrounding his own experiential knowledge of obesity as the basis of his presentation.
He continued:
I’m really here to talk to you as an obesity survivor because I know that I’m
not cured, that everyday I have to make a conscious attempt what I put in my
113 mouth, a conscious effort to get my butt out of bed to be physically active and
do things that make me feel emotionally well. What I want to do today is share
with you lessons I’ve learned to take us away from this kind of mentality about
how to make efforts in terms of improving our health that helped me on the
show, that has helped my patients, and hopefully will not only help you but your
family members as well.
His story, then, was meant to travel, to spread awareness about one of the major causes of diabetes (obesity) and provide tools individuals in the audience could use to prevent the condition in their own lives and within their social networks. This framing of his story’s explicit goals mapped onto Dr. Schuster’s articulation of the purpose of the Community
Event in her introductory remarks. With this introduction, Levine went on to present his story, periodically showing photographs to track his physical shape at various points in his life.
He entered into this story by saying:
I want to present you a case of someone who came to a crossroads in their life
who had to make a decision of whether to continue down a road of poor eating,
lack of physical activity, poor health, and an early grave, or had to make a
decision it wasn’t too late in their life to make a change, to go down a different
path. And that’s me.”
Interestingly, he begins to tell his story in the same way he might begin to tell another’s, temporarily blurring the line between the genres of personal experience narrative and medical case presentation. “As a fundamental ritual of academic medicine,” writes
Kathryn Hunter, “the narrative act of case presentation is at the center of medical
114 education and, indeed, at the center of all medical communication about patients. As a
narrative genre, the case has acquired a conventional structure and language that have
become a central tradition in scientific medicine. The case presentation conveys the
physician’s observations, thought process, and conclusions about the illness of a sick
person who has asked for help” (1991:51).60 The medical case study approaches the
patient from an objective, outsider’s position. While his presentation actually contains
very few generic features of the case presentation, Levine’s use of the phrase “I want to
present you a case…” works to frame his words initially within an “objective” point of
view. By invoking this genre, Levine introduced his own story in his voice as physician,
beginning to frame his story within the generic expectations of professional discourse.
With the phrase “And that’s me,” though, he shifted the perspective of his narration from the objective point of view of a professional outsider to the subjective view of the voice of experience.
He then continued by describing some specific details of his life, beginning with a broad overview of his childhood:
Now, both my parents were obese…My father, my mother’s Swedish, that’s
where I learned to enjoy marzipan and fried foods, and my father’s Jewish,
that’s where I learned the guilt over eating those foods ((laughter from
audience)). When I was little I’d say I wasn’t heavy at all, in fact I’d say it’s
kind of cute, I don’t know where that went wrong ((laughter from audience)),
but when I say I was thin you know I was really skinny, and to my mother
and her culture that wasn’t healthy. She used to give me money after playing
60 Similarly, Byron Good describes case presentations as “a genre of stories, through which persons are formulated as patients and as medical problems” (1994:79). 115 basketball after doing something physically active to go buy a milkshake at
the local ice cream parlor because in her culture that’s not healthy. Any of
you grow up in that culture, right? And that’s a big barrier that we have to
come, overcome.
In this part of his performance, he situated his childhood experiences within those aspects of his parents’ culture that shaped them, and it is significant that he did not include himself as a carrier of the cultural values he described. For example, it was his mother’s culture that viewed chubbiness as a marker of healthy children.61 While he may have
grown up within this culture, he described himself as a victim of it, not as an active
participant within it. When he asked, “Any of you grow up in that culture, right?” he
broke the frame of his story to invite the members of the audience to insert themselves
into his story, in the process reinforcing his idea that culture is a barrier to healthy living,
something the individual can, indeed has to, overcome.
61 Natalie Boero offers an interesting discussion of the representations of women’s roles in mainstream news articles, using “the place of women in this discursive tangle to show that in spite of a perceived relationship to nature, women’s association with culture and the socialization of children often holds them implicitly accountable for the spread of the ‘epidemic’” (Boero 2006:53). We see similar ideas expressed within the joking frame of the comedy television show King of the Hill. In one episode (Season 13, Episode 1) the character Bill Dauterive is diagnosed with diabetes. From the moment Bill is first diagnosed, he fails to take responsibility for his health and change his eating habits. He blames the disease on his “stupid genes” and, even when his friend Hank takes him shopping for healthy foods, he exclaims, “It’s my mom’s fault. When I was sad, she’d give me cookies. But when I was happy, she’d give me cookies. All of my emotions demand cookies, Hank!” Within this joking frame, however, the equation between diabetes and character flaws is destabilized as a second storyline develops in which the female character Peggy Hill decides that she will not let diabetes happen in her family. She begins to serve her son, Bobby, only healthy foods, including alfalfa sprouts, carrots, onions, seaweed, and wheat grass. At first Bobby is repulsed, but by the end of the episode he finds candy to be too sweet, and he describes wheat grass as “not that bad.” Through this secondary storyline, we see Peggy actually instilling a taste for healthy foods into her son, introducing the possibility that Bill’s mother could have, perhaps should have, done the same. While there is not room to discuss this point further, it supports Boero’s argument that how families, particularly mothers, gets discursively constructed as targets of blame.
116 He traces his weight problem to his medical residency, where he ate greasy,
unhealthy foods because they were always available and they were the only resource he
had available to him to stay awake. He acknowledged several times the contradiction of
being a physician who had not embodied the advice for healthy living he would give to others, highlighting how it undercut his ability to speak authoritatively as a physician. He described going to elementary schools wearing a shirt boldly showcasing the message
“Commit to be Fit,” only now realizing how ridiculous he must have seemed to the children. He also described how his patients would express concern abut his health:
…you know my patients would come in to see me and say, you know, “I don’t
want to talk about me today, Dr. Levine, I want to talk about you.” Can you
imagine paying your co-pay to go help your doctor? They were more concerned
about my health than their own health and I think they would look at me, someone
who used to pride himself on preventative medicine and say, “My God. He’s a
doctor. If he can’t do it, I can’t do it.” And I think I lost my ability to effectively
convince my patients to make healthy changes in their lives because I couldn’t
do it myself.
The trajectory of his story changes once he went on the TV show The Biggest Loser:
I lost 103 pounds in my first 12 weeks on the show [clapping from audience]
and another 50 when I came back. And everybody likes numbers but I want
to remind you, and its something I want to emphasize more later, it’s not
about the numbers. I got my physical health back. My blood sugars were
normal, my blood pressure’s normal, my cholesterol’s normal without
surgery, the fact that now three years later they’re still like that, the fact that
117 I can walk without pain, that I can chase my daughters’ boyfriends down the
street, I don’t need that gun permit that I was going to get anymore, the fact
that I can do those things and that I have my emotional health as well. When
I came back from the show, what do you think my patients said to me? They
said, ‘Who are you? We’re here to see Dr. Levine.” [laughter from audience]
But once they realized it was me, I think that I’ve been much more effective as a
physician, probably less empathetic, but much more effective, because they
looked at me as somebody who practices what he preaches and if he can do it,
so can I.
Like Thompson in the previous chapter, Levine used the genre of personal narrative in his performance to critique the category of medical authority in order to highlight the importance of individual action. While Thompson based his critique on the differences between expert knowledge and experiential knowledge, Levine’s critique was less straightforward as he blurred the distinction between these two categories and positioned himself as both doctor and patient.
I focus my discussion here on one particular performance of Levine’s story, though it is important to acknowledge that by the time he talked about his experiences at the Global Diabetes Summit Community Event, he already had much experience sharing
“his story,” for according to his website (http://www.drjeff.tv/), he has been invited to speak at several medical conferences and consumer-oriented events since 2005. Indeed, people can go to Levine’s website, click on the link labeled “My Story,” and read a variant of the tale he shared at the Community Event. On the website, his story is presented within an article called “Obesity is a Global Issue” by Eve Jacobs, originally
118 published in the UMDNJ Magazine (University of Medicine and Dentistry of New
Jersey). The article retells the story casting him in the third person, incorporating
personal quotes throughout. Another link labeled “Bio,” describes his professional
activities, but includes a mention of his participation in The Biggest Loser at the end. A third link, labeled “Dr. Jeff Commentary,” is written in the first-person, and begins in the following way:
I am sure many of you wonder, how a physician, who should know better, could
have developed such poor eating, exercise, and sleep habits. Yes, as a physician,
I know that obesity is a rapidly growing (no pun intended) epidemic in this
country, even among our children. I know what causes it, and the numerous
medical conditions and complications it contributes to. I know that it is the
second highest preventable cause of death in this country (next to smoking). I
also know how to diagnose and treat obesity. Most of us know all of these
things as well. However, like all of you, I am human, with many of the same
weaknesses and faults!”
Again, we see Levine blur the distinction between his status as expert and patient. He
then offers a list of “Lessons Learned” through the course of his experiences. Other
manifestations of his story, then, similarly demonstrate multiple invocations of authority
to speak based on both experience and expertise. As in Thompson’s performance during the story circle, Levine’s destabilization of “expert” knowledge worked discursively to
place the primary power for healthy living within the individual.
Levine’s celebrity status, however, stands as one key distinction between his and
Thompson’s performances. After all, before Levine steps onto the stage and begins to
119 speak, most audience members are already familiar with the basic structure of his story.
Even if they are not familiar with Levine specifically, they are familiar with the transformation narrative governing The Biggest Loser television show and its promotional materials. In this show, individual transformation happens at two levels: the internal and the external. The show is based on a foundational storyline where physical weight loss, the external transformation, can only happen if the individual makes a conscious choice within him or herself to enact lifestyle changes. Once this internal change happens, the external one then follows. This transformation narrative has inspired many viewers of the show to make the healthy choices they need to lose weight, for it works to empower individuals to take control of their bodies. For example, many people inspired by the show to start the process of losing weight have posted “Before” and
“After” pictures online to show their stories of transformation and to serve as inspiration for others (“Reality Show”).
Returning to the specific performance at the Community Event, Levine’s story, while grounded in the specifics of his individual life, had already been constructed to travel and become “other people’s stories” (Shuman 2005). Levine presented his story in a way that maximized the number of people who could identify with his experiences of weight gain and potentially enact his story of weight loss. He gives very little attention within his personal narrative to the time he spent on The Biggest Loser, focusing instead on the cultural factors and the stressful work environment that facilitated his weight gain.
Within the logic of his story, his life began to change when he finally decided to take responsibility for his own health. He enacted that change by going on the TV show, but he emphasized throughout the story that the real change came once he committed to
120 pursuing healthier choices despite the many obstacles he faced in his life. His
interactions with his lifeworld, then, became a matter of choice. 62 By tracing his
transformation back to an individual choice, Levine invited audience members to make
his story their own. While Levine did tell his audience that he would never be cured, the
structure of his story communicated a sense of closure: Through willpower and hard work, he overcame his obstacles to lead a healthy life. This narrative closure created an effect of making illness experience both coherent and containable. Like Thompson, he sought to craft the personal as allegorical while urging his audience to stop depending solely on medical experts in matters of personal health.
Levine’s story is reminiscent of the twelve-step rhetoric of such organizations as
Alcoholics Anonymous (AA), including the survivor language, the necessity of never relaxing vigilance and considering oneself cured, and, most important, the idea of a narrative as something that can be shared and can move out and help others.63 For example, in her analysis of personal storytelling in AA, Carole Cain explains that “As the newcomer learns the structure of the AA story, and learns the model of alcoholism encoded in the story, he learns to place the events and experiences of his own life into this form” (1991:244). The personalization of the community narrative structure is crucial to this process.
62 I draw here upon Elliot Mishler’s (1984) distinction between the “voice of the lifeworld” and the “voice of medicine” in his study of medical interviews. He describes the “voice of the lifeworld” as “the patient’s contextually grounded experiences of events and problems in her life. These are reports and descriptions of the world of everyday life expressed from the perspective of a natural attitude” (1984:104). While I argue against the naturalization of “experience” in this chapter, I find the term “lifeworld” useful to refer to perspectives of disease not situated within the paradigm of expertise.
63 For further consideration of storytelling in Alcoholics Anonymous, see Humphreys (2000); Jensen (2000); Pollner and Stein (1996); Rappaport (1993); and Swora (2002). 121 Levine’s story could also be identified with what Hawkins calls didactic
pathographies, “written with the expectation that the author’s experience might serve as a
mirror, or a model, for the prospective reader,” and she notes that “To some extent this
assumption of the ‘generalizability’ of illness is a part of our modern monotheic
mythology about disease, which assumed a uniformity of experience within a diagnostic
category” (1995:3). As the twelve-step rhetoric in Levine’s story highlights the personal
experience narrative as allegory and the medical case presentation presupposes an
abstract diagnostic category, the didactic pathography stands as a hybrid between the two.
The hybrid nature of these two forms of discursive power – allegory and abstract
category – work to transform Levine’s “I” story into a “we story” and to link individuals
– as well as their experiences – to one another.
The Limits of the Success Story
While I do appreciate the value of successful role models, I am wary of the
unintentional discursive work this performance might be doing within the space of the
Global Diabetes Summit Community Event. Sociologists have given increasing attention
to how scientific and media constructions of obesity are based on the idea that the pursuit
of health is both an individual responsibility and a moral obligation (e.g., Saguy and
Riley 2005; Saguy and Almeling 2008:59). These scholars point to the ways in which the obese body connotes the “spoiled identity” (Goffman 1963) of the obese individual, framing obesity as a visible marker of laziness and gluttony. Within this framework, obese bodies are external signs of flawed individuals who are either ignorant of or
122 unwilling to enact the lifestyle necessary for healthy living. In addition to blaming the
individual for failures to make appropriate health choices, scientific and media framings
of obesity also target culture as a major cause of the growing epidemic. As “healthy
living” is framed as a “natural” state, culture is blamed for disrupting this natural state
(Boero 2006). References to culture point to both to the fast food habits and sedentary
lifestyles of American culture and the traditional eating habits of certain ethnic cultures,
such as African American culture. Invoking both meanings of culture to explain high
rates of obesity consequently diverts attention from the structural and economic factors
contributing to health disparities.
Several speakers at the event drew on these problematic framings of culture
during their presentations. For example, during a panel discussion, Dr. Jean-Claude
Mbanya, a physician from Camaroon and President Elect of the International Diabetes
Federation, described how in his country, being fat is a sign of wealth, beauty, happiness,
and authority. He then explained the need to fight the misconceptions embedded in these
cultural beliefs, as well as the prevalent idea that diabetes has supernatural causes. He
continued:
And of course there are all these horrible misconceptions in terms of how to treat
diabetes. They said, if you [unintelligible in audio recording] a pineapple and
bury it, you won’t have diabetes. Who wants to go with this fanciful treatment
where the solution to curing diabetes lies with a pineapple?...So these
misconception have impeded on diabetes care in my country, so much so that
we’ve had to develop programs in terms of health promotion, in terms of the
development of diabetes programs, so we can fight against these misconceptions
123 and give better health care for our people…These are things we have to change in
our community, and in this community in Ohio you have minority groups where
these types of misconceptions are still at large, and we have to do something to
change it.
This description of cultural misconceptions demonstrates stereotypes of vernacular health beliefs discussed by folklorists David Hufford and Bonnie O’Connor (2001), whereby health beliefs diverging from scientific “knowledge” are attributed to individuals’ marginality and/or lack of education. Such a perspective within medicine’s paradigm of expertise has helped to entrench a sense of separation between expert and layperson (or in healthcare, provider and patient), and has produced a predetermined portrait of the social location of ‘belief’ (layperson: not-me) as opposed to ‘knowledge’ (expert: me)”
(O’Connor 1995:39). Health education, then, becomes framed as a one-way flow of objective information, whereby patients’ “beliefs” are framed as obstacles that stand in the way of their ability to take in and effectively apply scientific “knowledge.” Framing these beliefs as cultural problems, Mbanya’s description of the health promotion programs necessary to fight these misconceptions carries underlying assumption that have been recognized within scholarly critiques of cultural engagement in health-related fields.64
Within the performance space of the Community Event, Levine’s story had the potential to contribute to these broader stigmatizing storylines. The story of Levine’s triumph stemmed from an understanding that the individual needs to overcome external barriers to success, including culture. As I discussed in more detail above, audience
64 Refer to the Introduction for an overview of these critiques. 124 members were urged to see their culture not only as external to themselves but also as a
potential threat.
I am also wary of leaving unquestioned how voices of experience were
incorporated into this event as a whole. In his article “Metadiscursive Practices and
Scholarly Authority in Folkloristics,” Charles Briggs argues that:
In claiming the power to represent the voice of the Other, scholars shape not only
how these voices will speak (through literary conventions of translation) but also
what they will say (by selecting which texts to use and how to interpret them).
These works also create powerful reception frameworks as their authors create the
audiences they will address, and decide how they will relate their texts…
(1993:419)65
When those in power try to represent the voices and perspectives of others, they also
communicate how members of the audience should understand these alternate
perspectives. Turning this interpretive lens on Levine’s presentation at the Global
Diabetes Summit, I suggest that the staging of personal narratives at the Community
Event (especially in the voice of a physician) may have worked metadiscursively to
reinforce the authority of expert discourses. Hawkins tells us that “Case reports and
pathography function as mirrors set at an oblique angle to experience: each distorts, each
tells the truth" (1993:13). Often, these two genres of storytelling about a patient’s
sickness are at odds with one another, where the latter is understood as a corrective to the
depersonalization that accompanies the former. Levine talks about his experience
65 See Bauman and Briggs (2003) for an in-depth study of how “rendering language invisible...has played a key role in imagining and naturalizing new schemes of social inequality since the seventeenth century” (310). 125 drawing upon the conventions of both genres, subsuming the voice of medicine and the
voice of the lifeworld into one person. While blurred, however, the boundary between
expert and experiential knowledge still remains.
Placing genre in the framework of performance studies, Bauman and Briggs
(1992) describes how genre can be viewed both synchronically and diachronically.
“Viewed synchronically,” they write, “genres provide powerful means of shaping discourse into ordered, unified, and bounded texts…The invocation of genre thus provides a textual model for creating cohesion and coherence…” (1992:147). Thus, genres set up interpretive frameworks in situated communicative encounters. At the
same time, though, Bauman and Briggs highlight how genres are enmeshed in social,
ideological, and political-economic discursive fields that extend beyond these situated
perfromances. Levine’s use of personal narrative provides a rich site for exploring the
dialogic nature of his performance and its connection to broader discursive fields.66 On the one hand, his integration of both expert and experiential knowledge into his story created discursive spaces where the former could be questioned and the latter could be validated. On the other hand, the inclusion of personal narratives in the Global Diabetes
Summit ran the risk of reinforcing a larger movement among dominant cultural institutions to, in the words of Diane Goldstein, “appropriate vernacular voices and representations” (2010), potentially stripping the genre of the empowering potential it carried.
Besides Levine, performance artist Robbie McCauley was also presented at the
Community Event as someone offering a “voice of experience” as opposed to a “voice of
66 See also Hanks (1987) and Kapchan (1996)
126 expertise.” I will address her work more in depth in the following chapter, but I want to
highlight here how the framing of these two speakers within the context of this event
situated them differently as authoritative texts. For example, before McCauley took the
stage, Dr. Schuster introduced her as an accomplished performer and director, thereby
emphasizing that Sugar is primarily an art piece. As she introduces the performance, she
says:
She will present Sugar, and what Sugar is is an examination of Ms. McCauley’s
struggle with diabetes as it related to slavery, work, war, romance, and food.
Before each performance of Sugar, Robbie hosts study circles with the
community and during that time she gets to know individuals and hear their
stories and uses those to incorporate them into her performance.
While this introduction highlighted that her performance was based upon “real life stories” she has collected from local community members, it also made very clear that these stories had been filtered through McCauley’s artistic process before reaching the
stage. Her entitlement to share these stories was never questioned, but the constructed,
performative nature of her text was foregrounded. On the other hand, Levine was introduced as someone who was there to share his own story. The audience received no cues in the introductory statements that his story had undergone a process of construction, and I argue that his story is presented as being more directly reflective of his experiences.
As audience members are asked to identify with the “you” in the event’s theme,
“Diabetes and You: Today’s Challenges, Tomorrow’s Victories,” they are interpellated as
soldiers in the fight against diabetes. The inclusion of these two presenters in this event
shows how “expert” and “experience” are already a kind of complementary opposition
127 being imagined by the experts, with experience being, like culture, a euphemism for
stigma. Otherness, the abstraction, may be ennobled (Bourdieu 1985), but that does not
necessarily imply respectful engagement with its bearers on mutually negotiated terms.
As with attending to “patient’s experiences” in clinical encounters, recognizing “real life
experiences” with diabetes and its causes (obesity) in health education settings can still
reinforce existing power structures. Recognition of “experience,” then, lends itself to
some of the same critiques of “culture” in programs attempting cultural awareness, in that
it can reinforce pre-existing hierarchies that categorize people and knowledge systems
(Goldstein 2001).
Levine’s personal experience with obesity entitled him to speak authoritatively
from a non-medical perspective, but as Amy Shuman has argued, “The concept of
entitlement provides one way of investigating how appeals for accurate accounts of
reality couch and conceal the question of whose reality is recounted” (2005: 53).67 We must then consider whose experiences cannot be contained in the storyline he offers in his performance.
First, his storyline of success contradicted information people with diabetes receive from health educators. For example, a major outcome of his healthy living was that he did not need to take medication for his diabetes anymore. While observing diabetes nutrition education classes, I heard clients with diabetes say that the reason they
67 A similar perspective on personal narrative is presented by Langellier (1989) as she discusses “personal narrative as political praxis” in her overview of approaches to the study of personal narrative. In this approach, according to Langellier, “Personal narratives are defined by their political function rather than their formal features, performance, interactional structure, or social process. All personal narratives have a political function in that they produce a certain way of seeing the world which privileges certain interests (stories and meanings) over others, regardless of whether or not they contain explicit political content” (1989:271).
128 are at the class is to get their blood sugars under control through diet and exercise so that they can stop taking their medication. The consistent response of the dietitians teaching the classes is that each body is different, and that they may not be able to reach this goal, no matter how diligently they adopt healthy eating and exercise habits. Additionally,
Levine’s storyline contradicts the actual experiences of people with diabetes I have encountered through the course of this research, including one gentleman in Columbus who exclaimed: “I do everything they tell me to do! I lost 100 pounds, and I thought it was over with. And then it came back.” Levine’s story, while accessible to a broad audience, does not necessarily leave room for all certain complexities in the lifeworld.
While Levine’s story shares a similar structure with Thompson’s story from
Chapter 3, their contextualizing practices differ significantly. In placing the power for change primarily within the individual, Levine’s story did not attend to the structural inequalities that may stand in the way of making healthy choices. At the same time, though, his success stemmed from the support he received on the show. We could say, then, that the structural support he received during his weight loss allowed him to frame his performed narrative as an individual struggle.
Because Thompson spoke to an audience of African American community members, his contextualizing practices established a more complex relationship between his personal struggles and broader community struggles with diabetes. In contrast to
Levine, he emphasized the structural inequalities faced by many African Americans, introducing them as very real forces standing in the way of healthy living. Individual will was not the primary source of physical transformation. Rather, the introduction of external (religious and community) forces of support initiated the physical
129 transformations Levine described. It was through these external forces that individual
transformations and success stories became possible.
Thompson’s performance setting provided additional opportunities for contextualization as well. For example, he was able to draw upon culturally-specific
communicative strategies, such as call and response, to strengthen the sense of
community between himself and his audience. The most important difference between these two performance settings, though, was the opportunities for dialogue they provided.
The more intimate nature of the story circle, in contrast to Levine’s staged performance, allowed for immediate response from his audience members, potential entry points into emerging conversations between the participants about shared the shared obstacles they face. The public nature of Levine’s performance and the already public nature of his story – The Biggest Loser story – created a predetermined flow of information from
Levine to the members of the audience.
When looking at Levine and Thompson’s narrative side by side, I grow concerned about how the performance of the personal narrative genre may actually run the risk of
supplanting important moves toward explicit dialogue. Unfortunately, I have not yet had
the opportunity to access audience members’ responses to Levine’s performance style, so
I am limited in the conclusions I can draw until I conduct further fieldwork. However, I
base my concerns in part on the similarities between Levine’s narrative structure and the
breast cancer narratives Judy Segal analyzes in her genre-based critiques of personal
narratives. Segal argues that illness narratives can reinscribe a hierarchy of values for
experiences of illness, making some accounts more welcome, and thus more tellable, than
others (2005, 2007). She writes, “genres determine, to some extent, the rhetoric of their
130 material examples … .[B]y supplying the shapes in which stories may be told, genres
write stories” (Segal 2005:61). In a later work, she extends her critique to include how personal narrative is a genre that stands protected from criticism:
A critical conversation on breast cancer culture, for example, can be arrested
when someone says, ‘I’ve had breast cancer, and this was my experience. Who
continues to be critical in the face of the personal cancer story?...The personal
narrative can be the end of dialogue, a conversational trump card. That is one way
of viewing popular discourse on breast cancer – as a series of narrative
conversational turns, with little means of advancing the dialogue.
(Segal 2007:18)
Extending Segal’s concerns to the material here, I wonder to what extent Levine’s performance of his story may inadvertently function to close off valuable opportunities for dialogue for those who do not have the structures of support necessary to adopt his story as their own.
In the following chapter, I turn my analysis to another performer at the Global
Diabetes Summit – African American performance artist Robbie McCauley – whose performance works to enhance dialogue. She, too, uses personal experiences to engage with her audience, but through her performance of Sugar she offers an alternative constellation between the categories of “experience” and “expertise.” In the process, she opens up avenues of dialogue that have the potential to be valuable resources in individuals’ ongoing struggles with diabetes.
131
CHAPTER 5: “Grappling to Think Clearly”: The Vernacular Theorizing of Sugar
In this chapter, I explore the pedagogical potential of Robbie McCauley’s Sugar in the realm of diabetes health education. I begin with an overview of her performance work more broadly, drawing connections between the themes addressed in Sugar and her earlier works addressing African American experiences in the United States. I then focus my discussion on her performances themselves, and I argue that the ideas expressed in
Sugar work as a type of vernacular theorizing that calls attention to the “ideologies of communication” (Briggs 2005) that grant authority to certain people’s perspectives and ways of knowing over others. At the same time, her performances legitimate community understandings of the disease that do not fit cleanly within the experts’ explanatory frameworks described in the previous chapter. In the conclusion, I raise questions about how McCauley’s performative pedagogy might have reinforced the goals of the Global
Diabetes Summit Community Event, even as (and perhaps because) it disrupted idealized flows of knowledge valorized within discourses structuring the paradigm of medical expertise.
Sugar
132 I first met African American performance artist Robbie McCauley when she was an artist-in-residence in the Departments of Theater and Geography at Ohio State in
January 2006, where she worked on and presented her solo work-in-progress Sugar. As I explained in Chapter 2, I assisted McCauley during her residency, which involved participating in two story circles, one that took place on the university’s campus and one that took place at a community center; the second story circle was composed of mostly
African Americans. As we went around this circle at these two events, people started talking about their experiences with the disease itself. One woman spoke about taking care of her diabetic mother and watching her health slowly deteriorate. Another explained how difficult it was for her to take part in large family meals after her diagnosis with type 2 diabetes. When she was not able to eat the food her family had always served at such gatherings, she did not feel that she was truly a part of the festivities. Family members would comment on how they had changed the foods to meet her special needs, and she felt that she was disrupting the group dynamic she had experienced with her family her whole life. One man expressed anger at doing everything the doctors had told him to do—eat better, exercise, lose weight – and still having to deal with the nasty effects of the disease. Another woman told a story that began with popping a blister and extended into a saga that included an urgent trip to the hospital, doctors measuring her foot for amputation, her refusal of the amputation with the help of her health advocate and friend, a lot of prayer, and several months of lying on her back with her foot up in the air. In the end, she was able to keep her foot.
In both story circles, a sense of community was quickly created within the group, but I was struck in the second meeting by how quickly the conversation moved beyond
133 individual experiences with the disease to focus on diabetes as a community issue among the African American participants. The I of one person’s story was invoked in others’ stories, so that by the end people were speaking from the perspective of we: We need to find ways to deal with this disease so it doesn’t kill us. We need to take better care of ourselves. In addition, once everybody had a chance to share a story, a more free-form discussion followed which came to focus on the prominence of diabetes among African
Americans. Several topics emerged in this discussion, including the history of slavery and soul food and its negative effects on the health of African Americans, lack of access to healthcare, as well as the powerful operation of denial within the African American community.
At the end of her residency at Ohio State, I watched McCauley incorporate the stories I had heard in this second story circle (and even one storyteller/performer) into her performances at Ohio State. Presenting these stories next to her own, I once again saw the line blur between I and we, my story and our story. This connection between the personal and larger-than-personal was further enhanced during the "talk-backs" at the end of the performances, where audience members were invited to respond with comments, questions, and stories of their own. While McCauley’s performance focused primarily on her experiences with the disease as an African American, non-African Americans found connections between her experiences and their own. For example, one young white woman thanked McCauley for sharing her stories and began describing how she started to gain weight after one of her doctors put her on medication for another condition.
Because of her rapid weight gain, she developed diabetes, and now all her doctors treat her as if she brought the disease upon herself. She said she was grateful to McCauley for
134 calling attention to the stigma of diabetes. Talking to African American and non-African
American diabetic audience members after the performance, several told me they were inspired to take better control of their diabetes. At that point, I began to consider the educational potential of Sugar and its surrounding activities.
Wanda Dillard, Director of Community Development for The Ohio State
University Medical Center, watched McCauley perform during this visit. Soon after that, she invited McCauley back to Columbus to perform Sugar at the Global Diabetes
Summit Community Event she was organizing for the following year. When I first heard about the Global Diabetes Summit in February 2007, I contacted Ms. Dillard and asked if there was anything I could do as a volunteer for the event. I mentioned that I had helped with McCauley’s visit in 2006, and she asked me to do the same when she returned to
Columbus in 2007. McCauley conducted another story circle with community members, this time at the Near Eastside Healthy Lifestyle Center, a satellite of the Central Ohio
Diabetes Association which targeted their education and prevention efforts to the predominately working-class African American residents of the near east side of
Columbus. Many similar themes emerged in this story circle, including watching family members experience amputations and dealing with family members who “just don’t understand.” One diabetic woman recounted how her kids would ask her “How can you be tired if you didn’t do nothing all day?” recalling how she used to say the same thing to her diabetic mother before she herself was diagnosed. Another woman shared how her husband had to choose between medication for his high blood pressure and medicine for his diabetes, because they could not afford both.
135 Afterward, McCauley and I talked about the valuable exchanges that take place in these circles and started brainstorming about how she could come back to Columbus.
After she returned to Boston, I started the process of fundraising at Ohio State so that she could continue her work in Columbus.68 McCauley returned to Columbus for the third time in March 2009, where she conducted two more story circles and performed Sugar at the Department of African American and African Studies (AAAS) Community Extension
Center located in the near east side of Columbus.
“I’m always speaking from the African American, Black community”
According to McCauley, Sugar is an extension of work she began in the 1980s: “It comes out of my long term work on my life story as it impacts the survival of African American people in this country, a kind of relationship that I use to open conversations around the African
American presence in this society” (McCauley, personal interview). She connects Sugar with three other pieces that are part of a series entitled Confessions of a Working Class Black Woman, all of which use her own family stories to explore the broader experience of being African
American: My Father and the Wars, which focuses on her relationship with her father and his life as a soldier; Indian Blood, which focuses on her Native American grandfather and his participation in the Spanish-American War; and Sally’s Rape, which deals with the experiences
68The following Centers and Departments at Ohio State funded McCauley’s visit in March 2009: Department of African American and African Studies Community Extension Center, College of Arts and Humanities Diversity Committee, Project Narrative, Center for Folklore Studies, Department of English, Department of Comparative Studies, and Literacy Studies. 136 of her great-great grandmother, a slave who had two children by one of the overseers.69
McCauley explains that she uses her own stories to “hook into the history of black people as
survivors – and also into something that’s become such a dirty word now: as victims”
(McCauley and Rauch 2001:109).
In her analysis of Robbie McCauley’s Sally’s Rape, Ann E. Nymann identifies three key
strategies to McCauley’s “survival aesthetic,” all of which are also present in Sugar: revision,
embodiment, and dialogue. She discusses revision as the means by which McCauley is able to
connect her own and her great-great grandmother’s experiences with others across time and
space. Nymann explains:
McCauley’s strategy of revision begins with the act of self-representation, restoring
agency to the black female subject position. The notion of narrative itself is constantly
revised in Sally’s Rape. Unlike a traditional fixed script, McCauley’s performance text is
a site of experimentation, interaction, and improvisation, all of which privilege a
multiplicity of often disharmonious perspectives on race and gender over a single
authorial voice. (1999:580)
As McCauley engages “the structures of racial domination and assimilation” (Nymann
1999:581) stemming from the past and extending into the present, her goal is not merely to
present an alternative version of history. As she tells Vivian Patraka during an interview, “I
prefer when people say, ‘You made me think. I disagreed with you, but I was moved to think’”
69 Hill and Hatch explain how McCauley’s major works can be divided into four genres: site-specific pieces involving community collaborations, collaborations with thought music, sedition ensemble pieces, and the family series (2003:540). My Father and the Wars, Indian Blood, and Sally’s Rape fall into this last genre. For more bio-bibliographical information, see Peterson and Bennett (1997). 137 (1993). Her goal is to bring together multiple voices and stories, sometimes in fragmented
forms, to call attention to the complex subject of race relations in the United States. 70
As with Sally’s Rape, the line blurs between personal stories of diabetes and
broader stories of racial inequalities, and the stories themselves are often fragmented.
Consider the following excerpt from Sugar: 71
I remember that sugar was itself from way back in colonial times political.72 I
also remember the good times I had back in the time. Me and my friend Laurie
sitting up all night arguing with our poet friend about the song Brown Sugar. Me
and Laurie back then were saying we appreciated any praise of black women no
matter what. But that was before our consciousness came of Columbus bumping
into Santa Domingo looking for sugar in India, and the rape of black women
which was a metaphor for the rape of the land which is more than a metaphor than
the rape of our lives which is what the brother who later became my sweet sugar
man was talking about that day. I came to New York in 1965, the year that
aspartame was discovered by accident. Aspartame, 180 times sweeter than sugar
and hardly any calories. I weighed 120 pounds back then and I had skinny legs. I
70 Raewyn Whyte makes a similar observation: “Taking autobiographical material as its starting point, as does much activist art, the narrative is made up of interwoven fragments, personal anecdotes, incidents and aspects of African American history, organized by montage and collage structures” (1993:288). See also Garoian (1999).
71 Quotations are taken from transcriptions of two audio-recorded performances of Sugar in Columbus, Ohio. Given that each performance varies, I will identify whether excerpts of Sugar in this chapter are from McCauley’s performance at the Global Diabetes Summit Community Event on November 30, 2007 or at the AAAS Community Extension Center on March 13, 2009.
72 See Sidney Mintz’s Sweetness and Power: The Place of Sugar in Modern History for an in-depth historical study of sugar as a global commodity.
138 can’t start like this. I can’t start with Mick Jagger. It’s too much sex. Which is
all I can think about lately, but that’s another story.73
This section of her performance intentionally lacks one clear narrative structure, instead jumping from one topic to another, almost like a stream of consciousness.
During an interview with me on March 12, 2009, McCauley explained how she developed Sugar with the goals of using personal experiences to rethink the historical race relations:
I did a piece called Love and Race in the United States which was kind of a sequel
to Sally’s Rape, and in it I talked about my own relationship with a white person,
a white man, and I talked about oddly how my diabetes impacted that
relationship, and then I opened it up in my thinking to the whole subject of how
sugar affects sexuality ((SB: right)) both you know in culture you know the sweet,
the sweetness of romance as well as the rot [laughs] ((SB: yeah)) of trying to
maintain relationships especially across all these boundaries. And then that goes
back to the triangular slave trade because with sugar, slaves were central to that,
and then I learned that sugar was even more profitable even than cotton ((SB:
huh)) and how of course large numbers of slaves worked on sugar plantations,
again very much an integral part of the big story ((SB: yeah)) of that particular
part of my story and then when I first started doing this to audiences I realized
that diabetes has a particular impact on African American people…and all those
internal personal as well as larger implications just came to play as I was
exploring it.
73 November 30, 2007
139 She sees her personal experiences with diabetes then, as inextricably intertwined with a broader
complex of personal and historical stories, so that one goal of her performance work is to call
attention to where these multiple storylines overlap.
Second, Nymann points to the ways McCauley’s uses her body in her performance as a
primary text and medium for communication. She looks particularly at the notable scene in
which McCauley stands naked on a table, presenting herself to the audience as a slave for sale,
turning her body into a commodified object and making her audience complicit in the
objectifying gaze. McCauley also acts out Sally’s rape, conflating traumas of the past with the
present moment. The body is undeniably a part of the performance, as well as the history being
invoked and contested within it.74
McCauley embodies her performance of Sugar as well, both in the stories she shares and
as a physical presence on the stage. She foregrounds her diabetic body as she checks her blood
sugar and takes a shot of insulin, showing the routines she integrates into her daily life, reading
her body and controlling it. During another part of the performance, she performs her body out
of control, reenacting her own struggle to drag her body to the refrigerator to get some juice
when her blood glucose levels fell to dangerously low levels. Throughout her performance, she
makes clear that her reflections upon sugar are intimately tied to her actual physical body
standing before the audience.
74 According to Whyte, “This is at once a body saturated with memories of sensual experience, a text written by racism and bounded by family, history, and gender” (1993:277). This analysis of McCauley’s engagement with her body resonates with Elizabeth Alexander’s analysis of Audre Lorde’s Zami and The Cancer Journals. She writes, “In Lorde’s work, life experience ever marks and takes shape as visible body memory, as a collage whose assembled scraps always allude to their part and beyond to a collective race memory…” (Alexander 2002:221). See also Albright on the embodiment of history by African American contemporary dancers (1997:150-177)
140 She also calls attention to the implications of having a visibly black body.75 For
example:
It was only later when my father came I was almost in a coma took me to the
hospital and they didn’t want to take me in. Now a lot of folk don’t know about
this, this wasn’t even down south, this was really down south. They don’t want to
call down south ‘cause they don’t have no signs. When we lived down south they
had signs. When we moved to Washington D.C. they didn’t have no signs. You
had to just know where not to go.76
She presents her diabetic body in the present as inextricably linked to a history of racism in the
United States.
The third strategy Nymann identifies in Sally’s Rape is dialogue. Much of the
performance involves conversations between McCauley and her white co-performer, Jeannie
Hutchins, and Nymann writes that “Dialogue across difference, with all its baggage and
misunderstandings, is both the subject of this work and the work we must do, in the interest of
survival” (1999:585). Discussing interracial conflicts on stage as well as opening spaces for
discussions with the audience during the performance itself, the purpose of the performance
piece is not just to share Sally’s story but to foster dialogues on the subject of race and its history
in this country– dialogues which, like the performances themselves, will be ongoing works-in-
progress.
75 For a discussion of how black bodies are marked in America by others, see Carole E. Henderson’s Scarring the Black Body: Race and Representation in African American Literature.
76 March 13, 2009. This experience is similar to that described by Zora Neale Hurston in “My Most Humiliating Jim Crow Experience” (1992).
141 In Sugar, McCauley also models dialogues to engage with a multiplicity of
perspectives about the disease. For example, at one point in her performance she shares a
conversation that took place during one of the story circles in Columbus, Ohio:
Given sister said, “Well, I am not a diabetic, I’m a person with diabetes,” and the
other brother said, “We don’t have diabetes, it’s not something that you really
have. And sister who had just gone through all of that with her foot said, “Don’t
put that on us.” She said “We can’t carry this by ourselves.” He said, “But we
have to understand it is up to us to figure out that we don’t have this,” and she just
dismissed that. And she said “I do have diabetes, but I don’t consider myself a
diabetic. I don’t consider myself a victim in the conversation.”77
She does not side with any one perspective represented in this dialogue; rather, she
highlights what perspectives have been revealed through conversation. Interestingly,
these are not dialogues across racial divides, as in Sally’s Rape, but conversations among
African Americans honestly talking about the disease.78
For McCauley, one reason that diabetes remains so devastating among the African
American community is that people do not talk about the disease, either because they
deny it or because it is not an acceptable topic for social conversation. Psyche Williams-
Forson (2006) recognizes such a silencing in her analysis of George Tillman Jr.’s 1997
film Soul Food. Focusing her discussion on the death of the fictional family’s matriarch
Big Mama due to diabetes, she asks why, after Big Mama’s death, there were no
conversations among family members about the disease and its causes. Williams-Ford
77 November 30, 2007
78 Journalist Maria L. La Ganga reports on similar conversations taking place among African American women in Los Angeles, California in “They’re Doing a Feel Good Thing” (2009). 142 expresses concern about how such a lack of dialogue might facilitate the occurrence of diabetes in the family presented in the film as well as among African Americans
watching it. When I asked McCauley about her goals for Sugar, she similarly pointed to
the importance of dialogue in her response:
They’ve come to develop as a way of helping, I hope, people to talk about a
condition that is now more serious just because it has developed so horrendously
throughout society and, but it is also a condition that has been silenced and so
much of my own performance work again is to try to talk about things that are
hard to talk about and that I feel talking about it will help make positive
changes.79
Inspiring conversations, then, becomes an important step in resisting the devastation of
diabetes in the African American community.
Vernacular Theorizing through Dialogic Performance
McCauley models community dialogues in her performances and talks about her
own complex relationship with the disease, both in the past and the present, in order to
get people talking. As she told me during an interview:
I’m much more interested in the silencing of ourselves and our families and their
stories that have impacted me from friends and relatives, because one usually
functions reasonably well at the beginning of the condition and often they don’t
79 This idea overlaps with Audre Lorde’s discussion in The Cancer Journals regarding the importance of transforming “silence into language and action” (1980:20).
143 do treatment, don’t go to health care, all those reasons why we distrust, valid
reasons why we distrust the health care system, uh and uh don’t take care of this
lingering condition, don’t talk about it.
Highlighting here a historical mistrust of health care systems,80 she emphasizes in her
performance the multiple ways of knowing that inform her own understandings of
diabetes, ways of knowing that extend beyond this expert-based source of knowledge. 81
Consider the following excerpts from Sugar:
o “They say diabetes started during the ice age to keep people warm. As
far as I know, my people were south of the Sahara during the ice age, so
I’m not sure if that’s true.”82
o “I remember what I learned over the years coming to the different
Columbuses in my life I’m from Columbus, Georgia, in Columbus, Ohio
I haven’t done the research but the statistics say there are more African
American people here especially in the area of the near east it’s called
with diabetes. 83 I’ll accept what I’ve heard and believe.”84
80 The general distrust that McCauley refers to is spoofed in the episode of the comedy show 30 Rock I discussed in Chapter 1. Corbie-Smith and Arriola (2001) also address what they describe as “a legacy of mistrust” in the Black Community. See Fine and Turner’s Whispers on the Color Line: Rumor and Race in America and Turner’s I Heard It Through the Grapevine: Rumor in African American Culture for discussions about the mistrust of health experts among African Americans.
81 Bonnie O’Connor (1995) has effectively argued that “knowledge” and “belief” are typically used as evaluative terms, where knowledge is often understood to be what we have and beliefs are what others have. To avoid making such evaluations inadvertently here, I am using the phrase “ways of knowing” to refer both to expert-based and non-expert-based beliefs/sources of knowledge.
82 November 30, 2007
83 McCauley refers here to the near east side of Columbus, Ohio, a community experiencing disproportionate rates of diabetes and its complications. 144
o “And every time I try to dismiss my own traditional religion I have to
ride an airplane and the airplane starts to go up I go straight to Jesus,
but I’m not saying everyone else has to do that, some of the most decent
people I know don’t believe in God, I’m not saying what anybody else
ought to believe. I myself accept DNA and I accept evolution, and I
accept stem cells, but I’m not saying what anybody else ought to accept
because I have been struggling to put contradictions in place with the spirit
for a long time.”85
o “There’s a story a woman told in Columbus. She said, ‘I’m a blister-
buster and when I had a blister on my foot, I took a hot bath and then I
busted it. And then I thought everything was right but I was driving to
Dayton and something inside of me told me I that I should go to a
doctor. And I trusted my intuition, and I went to the doctor and the
doctor gave me antibiotics and sent me home. But something inside me
told me to contact a specialist and I was put into the hospital and before I
knew anything they were measuring my leg…’ And she talked to her
friend, her health advocate, and they both decided that this would not
happen. She had a strong belief in God, and she said she prayed on it
84 November 30, 2007
85 November 30, 2007
145 and started to ask questions and finally it was decided that what she
needed was an infusion to get rid of the infection, but if she hadn’t
trusted her intuition, if she hadn’t consulted with her health advocate,
she might not have known and not for her own sense for her life and
she prayed, she might not have had the result that she did, and now she is
very happy with her decision.”86
As these examples demonstrate, hers and others’ understandings of diabetes involve the
incorporation and evaluation of multiple ways of knowing, including scientific, religious,
and experiential sources of knowledge.87 This message resonates with the works of
folklorists such as Erika Brady, Diane Goldstein, David Hufford, Michael Owen Jones,
and Bonnie O’Connor seeking to destabilize the opposition between “beliefs” and
institutional “knowledge” in medical contexts, calling attention to 1) the power
differentials inherent in the valorization of medical knowledge (even those that “take into
account” cultural factors) and 2) the idea that “lay” health beliefs are not mutually
exclusive from more authoritative discourses on health. As McCauley performs her
experiences, she makes clear that these multiple ways of knowing cannot be easily
separated in the real lives of people with diabetes. At the same time, she weaves
throughout Sugar acknowledgements of the ways that only certain modes of presentation
are granted authority. I offer here a couple of examples:
86 November 30, 2007
87 McCauley’s references to these various ways of knowing – scientific, religious, experiential – are marked in bold.
146 • “I’ll tell you how I started talking about this. In 1997, the New England
Journal of Medicine wrote this, I always carry the paper with me
because unless you cite sources people don’t want to listen to you, but
it says “Health System Racism Historically Parallel Racism in US
Society.” The health system was strengthened on the basis of race and
class, which was largely responsible for the creation and the evolution of
that and of inequality.”88
• There’s so much written about sugar, they’ve got charts -- they love
charts and diagrams and treatises -- and now they talking about racism
[talking more quickly] and health parity and African Americans and
nationalism local bias in medical decision making implication from the
medical school curriculum Americans’ views of disparity in health care
who knows about it and who doesn’t racism in medicine health parity for
African Ameri- the slave health deficit going all the way back there under
the shadow of Tuskegee African Americans and health care diabetes in
African Americans [slows down] which is what I came to talk about.89
At the same time, while some have more authority than others in the realm of expertise, the authority of experts do not necessarily carry the same weight in patient’s lifeworlds.
For example:
88 November 30, 2007
89 March 13, 2009 147 • Later another brother said “I hate this disease. It came upon me without
my permission. I do everything they tell me to do. I lost 100 pounds, and
I thought it was over with. And then it came back. He said, “And then my
paltry sex life.” He said, “They gave me little pills for it. The disease had
the nerve to attack that. So I take the pills,” he said. “Sometimes I feel
like going down into my garage, turning on my motor, and put on my
favorite music. He said nobody else would think I killed myself if I put
that song on. He said ain’t nobody can take care of my little dog like I
can. He said I can’t do that.” But I know what he’s talking about.”90
• “I, I always talk about sugar the way I want to talk about it. I’m the
one who’s living it. I know better.91
Richard Bauman and Charles Briggs (1990) argue that performance gets implicated in larger systemic structures of power as individuals and institutions situate discourse into new genres and performance settings through processes of de- and recontextualization. Briggs (2005) extends this notion to discourses about health, showing, for example, how popular stereotypes are incorporated into expert discourses of disease. As a result, he argues, some people are naturalized as producers of authoritative knowledge while others are naturalized as its recipients and effectively silenced. Thus, in the words of Briggs, we “need to ponder not just the content of messages but how the
90 November 30, 2007
91 November 30, 2007 148 ideological construction of their production, circulation, and reception shapes identities and social “groups” and orders them hierarchically” (2005:275).
McCauley engages similar ideas in Sugar, for an emerging message is that, while dealing with diabetes actually involves engagement with multiple discourses about health and illness, certain discourses and modes of communication carry more weight than others, especially in institutional settings. McCauley situates her work generally as both personal and larger than personal, using her own experiences as “ways to relate to other people who are dealing with similar issues of personal stories, bigger stories, and politics and economics” (McCauley 2000). Always “speaking from the African American, black community” (McCauley 2000), she explicitly draws upon the power of the vernacular in her performances, and here I refer to Thomas McLaughlin’s use of vernacular theory, drawing upon Houston Baker (1987), to describe “the practices of those who lack cultural power and who speak a critical language grounded in local concerns, not the language spoken by academic knowledge-elites” (McLaughlin 1996:5-6). While the term
“vernacular” is often used in reference to “community-based forms of cultural expression” (2004:71), including language, architecture, and design, Diane Goldstein notes that the idea of vernacular theory extends beyond the expressive mode. In her work on vernacular risk perception about HIV/AIDS, she draws parallels between vernacular theory and Michel Foucault’s “subjugated knowledge”: “A subjugated knowledge is an autonomous, non-centralized kind of theoretical production, one…whose validility is not dependent on the approval of established regimes and thought” (Foucault 1980: 81, qtd by Goldstein 2004:72). In her performances of Sugar, McCauley consciously uses the stories of herself and others, rhetorically grounded in the experiences of real life, to
149 confront the broad power structures influencing her own particular experiences of the disease. She presents a “view from beneath” (Whyte 1993:282) that highlights multiple experiences of being African American and diabetic. By deliberately showing the dynamics of knowledge production and reception emerging when her and others’ experiences are presented alongside more authoritative medical sources, McCauley implicates certain “ideologies of communication” (Briggs 2005:271) to make visible the power differentials that contribute to current disparities in health.
Ultimately, McCauley’s Sugar emphasizes the coexistence of multiple experiences and ways of knowing about diabetes. As a result, this performance work destabilizes the notion of one pathway to healthy living with diabetes. McCauley’s mode of embodying her performance also helps reinforce this idea, especially when contrasted with Levine’s. Levine’s body was used in his performance to serve as evidence for his personal triumph. The images of his obese body projected onto the screen behind him created a visual disconnect between the person in the images and the person standing on the stage. Even though he stated that as an “obesity survivor” his success was a work-in- progress, the juxtaposition of the bodies of the past and the body of the present situated his out-of-control body squarely in the past, overcome by Levine’s transformed lifestyle.
Levine’s struggles were disembodied from the person on the stage. McCauley, on the other hand, does not visually distinguish between past and present. She does not allow the audience to see a clear distinction between her body in control and out-of-control.
Both types of embodied experiences are enacted through the performance on the stage.
Charles Garoian writes that McCauley’s “body functions as a cultural signifier engaged in a semiotic performance” (1999:102). The presence of her body on stage could signify
150 a success story, given that she stands before the audience without any of the visible physical markers of diabetes-related (such as amputated limbs) despite living with the disease for decades. McCauley, however, does not frame her body as a model of success.
She disrupts the image of the visibly healthy body on stage with enactments of, for example, a body weakened by low blood glucose levels. In the process, she highlights how the disordered body inserts itself into the lives of diabetics, even as they go through the motions of checking blood glucose, taking medications, and trying to eat healthy foods. Laurence Kirmayer tells us that “Any theory of meaning that hopes to address the experience of illness must give due weight to the primacy of the body not only as an object of thought but as itself as a vehicle for thinking, feeling, and acting” (1992:325).
The body presented onstage in McCauley’s performance is neither completely within her control nor completely out of it. It is presented to the audience as somewhere in between.
Resituating Experience and Expertise
As I noted in the previous chapter, McCauley’s presentation of her experiences are no less constructed, or more authentic, than Levine’s presentation of his. They do, however, situate the individual’s experiences differently in relation to expert understandings of health and illness. In the introduction to their edited volume on
Indigenous peoples and diabetes, Mariana Ferreira and Gretchen Lang (2006) criticize the limited use of “culture” as it is employed by health professionals to explain why individuals make poor health choices. Such a perspective, they argue, ignores the situational and historical factors that contribute to the high rates of diabetes in these
151 populations. They offer instead “knowledge as a major modality of culture” (2006:17),
creating a framework where historical memory and community explanatory models are
recognized as legitimate forces shaping the experience of the disease in the present day,
rather than as barriers to good health. I argue that in Sugar, McCauley employs a similar
understanding of knowledge as a major modality of culture, particularly among African
Americans. For example, Whyte describes how McCauley “draws on African-American
ways of speaking and telling” (1993:287) in her work. After McCauley’s March 13,
2009 performance, an African American community diabetes educator identified the
cultural importance of the performer’s speaking style during an interview with me: “She
talked it out, and she was talking to herself. That’s what made it so powerful. I
remember my grandmothers would talk to themselves to figure things out. People don’t
do that anymore…I think [seeing her talk it out] triggered a memory in people.” 92
Through this modeling, McCauley constructed talking as a cultural resource.
Significantly, McCauley does not readily embrace cultural understandings of
disease over the authority of experts. Instead, she constructs the experience of diabetes as
ongoing negotiations between different ways of knowing based on individual and
community histories. Through the fragmented nature of her performance, she
demonstrates how these negotiations involve piecing together knowledge from different
sources. Watching her perform, I was reminded of Alessandro Portelli’s comparison of
William Faulkner’s 1936 novel Absalom, Absalom! to an oral history interview with
92 Patricia Collins also identifies the importance of “talking things out” when she discusses “The use of dialogue is assessing knowledge claims” (1990:212) as one key dimension of an Afrocentric feminist epistemology. See Ryan (2004) for an application of Collins’ ideas to breast cancer awareness efforts directed toward African American women.
152 Italian factory worker Alberto Petrini. In his comparison, Portelli notes that the manipulation of time used by both narrators serve “not only to reconstruct the past, but to evaluate it” (1991:273). He also explains how both texts reveal the actual ways children learn about history and situate themselves within it: “They pick up knowledge from overheard snatches of conversation among adults, from chance remarks, from seeing how their father looks when he comes in from work, from breathing the factory experience in the atmosphere that surrounds them” (1991:274). People do not learn about their individual and community histories through an ‘objective’ chronology someone shares with them at a particular moment in time. Knowledge, I would argue, circulates in similar ways, and McCauley showcases some of this process.
She is not showcasing a dialogue between expert and community systems of knowing, where each is fully coherent and accessible. She does not invoke one stable community perspective as a corrective to an oppressive medical perspective; her disruption of experts’ ways of knowing emerges from the processual nature of her work.
While in scientific practice the conclusion is always subject to retesting and revision, its translation into professional practice tends to abstract it into this kind of authoritative
Truth. By the time the scientific utterance reaches lay persons, it is no longer open to interpretation. Through her dialogic approach, McCauley brings this interpretive process into real time, highlighting how the interpretive process should, and in fact does, extend into the realm of the lifeworld. She offers an individual and collective way of thinking out loud.
Through strategies of revision, embodiment, and dialogue, McCauley questions expert authority and invokes it as she performs her “story.” This co-occurrence of taking
153 up and resisting medical discourse is not unique to McCauley’s performance and has
been identified in scholarship on personal illness narratives (e.g., Schneider 2007). Such
narratives, however, have not been readily utilized in health education contexts, for they
do not necessarily reinforce a hierarchy of knowledge where professional expertise stands
at the top. I wish to turn attention now to how respectful recognition of this type of
engagement with expert knowledge systems can work productively in educational
contexts like the Global Diabetes Summit Community Event.
One significant message communicated through the performance is that a key step
individuals can take in fighting the awful effects of the disease is to begin talking about
it. This message is clearly expressed in the following section from Sugar:
When I was a little girl even back then I’d get tired, I loved to play I loved to go
outside make plays with people, I didn’t know that’s what I’d be doin’ for the rest
of my life but we used to make plays and rituals up and down the street but I got
tired so I became the director ((laughter from the audience)). And um but the old
folk used to say I believe that girl got a little bit of sugar, 93 and you know what
that means a li’l sugar that means you got some’n that has to do with sugar but we
ain’t gonna talk about it…People just love you so hard they don’t even want to
know, mm-hmm. [She takes a bite of avocado sandwich she made on stage.] My
father and them they had ten children, his father was a buffalo soldier they drove
all the way on a on a wagon from Kansas and my grandmother washed clothes on
the army base. Everybody has in their family some stories that are so big that they
93 For descriptions of health beliefs associated with “sugar,” see Camino (1986: 67-8); Hill (1988:63); Matthews (1988); Nations, Camino, and Walker (1985); Roberson (1983:154); Snow (1977:38); Snow (1993:120). 154 don’t even tell -- crossin’ country bein’ soldiers livin’ and workin’ in their
community, we’ve got so many good stories and we don’t even tell em, and some
of em we really ought to tell, like who has diabetes, not a li’l bit of sugar. Like
what is it? And how does it work on you? And did you get it when you were a
chil’ or did you get it when you were grown? And how do you assess what they
tell you that you oughta do for yourself? [She takes another bite of the sandwich.]
Never any of those conversations, never.
To counteract the silences described here, McCauley typically ends her performances of
Sugar with talk-backs with the audience, a common practice in her community theatre projects that carries great significance given her focus on the importance of opening up conversations that may have been silenced in the past. In an article on their participatory theatre methods (structured as a dialogue rather than a conventional academic argument),
McCauley and co-author Marie Cieri write that the purpose of performing is “not to get up and tell a single ‘right’ story. The point is to put often difficult or challenging aspects of community dialogue on stage, to engage audiences in that dialogue and for it to continue after people leave the theatre through the examples of what’s been put on stage”
(2007:146).
We see similar goals in Carl Lindahl and Pat Jasper’s Houston Survivor Project, where survivors of Hurricanes Katrina and Rita interview one another about their experiences during and after the storm. Lindahl (2010) describes how survivors’ stories that contradicted the stories circulating in the media and other authoritative outlets were either ignored or belittled as delusional in Katrina’s aftermath. The great value of the
Survivor Project, Lindahl writes, is that it allows stories to be exchanged among
155 survivors, those individuals whose voices have been excluded from official accounts of the disaster. The point, then, is not to collect stories as public testimonies. As with
McCauley’s work, what is most important is to provide a space where people can have an audience to talk about their experiences and perspectives on their own terms.
For her November 30, 2007 performance at the Global Diabetes Summit
Community Event, given the structure of the event, there was no time in the schedule for a talk-back. Instead, after the performance, Dr. Schuster announced that McCauley would be available to individually answer questions anybody might have about her performance. She was invited to perform her craft as an artist, and her legitimacy on stage was confined to her role as an actress within the frame of her performance. I find this significant not because I think McCauley’s voice outside the frame of her performance was explicitly rejected; rather the label of “performer” prevented its inclusion from even being considered.
Although McCauley’s Sugar was marginalized as an educational tool at the
Global Diabetes Summit Community Event by being placed in the category of “art,” it nevertheless has great potential to contribute to current diabetes education efforts, particularly among those labeled most “at risk” and whose voices have been excluded. I believe it is particularly effective in presenting an alternative picture of the relationship between individual health choices and the cultures with which people identify, opening the way for community identities to be productive tools in fostering healthy behaviors rather than inherent obstacles. What makes Sugar so valuable as an educational tool is
156 not just that it puts forth an African American woman’s experience with diabetes,94 but
that it uses experience as an entry point for discussions about an individual’s
relationships to culture and expert systems of knowledge. It provides important
opportunities for explicit contextualization.
To demonstrate this point, I present an exchange that emerged during a
performance talk-back at the AAAS Community Extension Center in Columbus, Ohio
March 13, 2009.
One African American woman in her early twenties responded:
I first and foremost want to thank you for sharing your story, uh at points I went
through every kind of emotion, I was crying at certain points…the issues that you
highlighted about how we don’t talk about it and why we don’t talk about it were
really important for me, um, and um I also like what you said about your family
being “foodists.”95 I thought it was not only dead on but pretty comical
especially for black folks because of our relationship with food, it’s a very very
difficult disease to have because this is a piece of work you’re sharing, your art in
terms of building community, but a lot of community building for black folks
goes on around food so it’s very difficult, the social pressure that you brought up,
its hard to maintain your health and balance but also knowing how crucial
94 I do not seek to diminish the importance of black women giving voice to their experiences. See Evelyn White’s The Black Women’s Health Book: Speaking for Ourselves. 95 She refers here to a section in that performance of Sugar where McCauley said, “…and I’m gonna tell you the honest truth. I’m glad I didn’t know I was a diabetic back then because my family were cookists.”
157 community has been for black folks and how that community is built and has been
built around food. I’m glad you brought it up.96
She continued:
I think there is a tendency just as we internalize racism to sort of internalize the
stigma about the disease so that we sort of blame ourselves if we have
complications, but it’s not our fault. It’s an impossible disease to manage ((from
the audience: “that’s right”)) nobody can have perfect blood sugar all the time
because it involves so much we’d have to spend our lives taking care of the
disease and doing nothing else in order to have maybe near perfect control and so
you know if there are complications and problems we’re doing the best we can do
to manage the disease and do all the wonderful things we need to do in life in
order to be fulfilled.
McCauley responds to the topic of shame:
Absolutely, I’m glad you brought that up. There are things that we carry even now
that and there are things that happen in conditions like this you feel like you’re
doing ok. That’s why I like to tell the story of the man with the pills, I didn’t, I
feel like there’s nothing I can do and it just makes me so frustrated to have
thoughts of getting rid of myself because there’s no control. And if you do the
best you can you stay as well as you can but we often have that syndrome of “If
I’m not doing perfectly then I’m failing and I’ll just stop doing ok.” And we don’t
have to be that way, we don’t have to carry so much shame. All people do this in
96 See Whyte (1993:286-287) for a discussion of how McCauley has incorporated food as a symbol for exploring racism in other performance works. 158 different ways, different cultures have different shame points, but uh I think for
African Americans it’s the way we are treated in the health care system. We are
often treated as people who are doing the wrong thing rather than people who are
coming for help.
Based on these types of exchanges taking place during the talk-back at this performance,
I am interested in thinking about what topics might have emerged if people were offered a space for reflecting upon and sharing their own lifeworld experiences within a discursive space not directly mediated by medical professionals. What lines of dialogue might have opened up between community members and health professionals in such a discursive space? How might these alternate modes of communication between community members and health professionals have supplemented the goals of the event as a whole?
Toward a Performative Pedagogy in Diabetes Health Education
In her essay “Sharing the Work,” McCauley writes that “Actors can rather safely explore the painful, the sad, the fearful, the so-called negative conditions and be able to perform them with energy, joy, beauty, power…This work, basic to acting, is useful for audiences as well – to see examples of grappling to think clearly” (2006:483-484).
Highlighting her own experiences of “grappling to think clearly” in terms of diabetes,
Sugar presents personal experiences of diabetes that destabilize the idealized (and potentially stigmatizing) flow of information framing Levine’s performance. The educational potential of Sugar at the Global Diabetes Summit Community Event fits in
159 the framework of what Elyse Lamm Pineau terms “the poetics of educational
performance” (2005:23).97 Pineau explains:
It recognizes that educators and students engage not in 'the pursuit of truths,' but
in collaborative fictions -- perpetually making and remaking world views and
their tenuous positions within them. Educational poetics priveleges multiple
stories and multiple tellers as the narratives of human experience are shaped and
shared by all participants in the performance community…In effect, performance
reframes the whole educational enterprise as a mutable and ongoing ensemble of
narratives and performances, rather than a linear accumulation of isolated,
discipline-specific competencies. (2005:23)
Seriously engaging with multiple perspectives of diabetes through McCauley’s
performative pedagogy, I argue, would not have undermined the educational goals of the
Global Diabetes Summit as a whole. (Recall Dr. Schuster’s introductory remarks: “We
are trying to get anybody and everybody talking and thinking and managing and
educating about diabetes.”) Rather, through discussions emerging in the forum of the
talk-back, Sugar could have provided a way for health professionals to engage publicly
with the complex ways community members interact with that knowledge – without
inherently falling back on the culture as obstacle motif.98
97 Pineau draws here upon the work of Dwight Conquergood.
98 For an example of a conscious use of performance to disrupt one-way flows of “expert” knowledge in health education, see Conquergood (2004).
160 David Hufford has argued that it is crucial for health professionals to recognize the rationality of ways of knowing that are different from their own. 99 Employing patients’ uses of folk healing beliefs and practices to support his point, he argues that “A surgeon and a folk healer can rather easily be brought to understand the logic of each other’s thought if each will listen to a straightforward description of the assumptions and observations involved” (1994:124). At the same time, though, Hufford makes clear that recognizing the logic of different beliefs does not necessarily mean privileging them over their own. The value of engaging respectfully with different beliefs is that an opportunity then emerges to open up honest conversations with the patient, turning the clinical interaction into a collaborative moment rather than an adversarial one.
While Hufford focuses on engaging alternative health belief and practices in clinical settings, his argument extends to engaging different ways on knowing at events such as the Global Diabetes Summit Community Event. In both the clinic and the
Community Event, health professionals and patients come together with a common goal of alleviating the devastating effects of diabetes. By attending the Community Event, the members of the audience were already being proactive in the fight against diabetes, both at personal and community levels. Opening the floor for these individuals to voice their perspectives of the disease, not just to seek information from the experts, may have created “a common ground for discussion” (Hufford 1994:124) that could have been enlightening for both health professionals and community members alike.
99 He explains that “’Rational’ simply means based on the coherent use of human reasoning” (1994:123). 161
CHAPTER 6: Conclusion
Through the examples presented in the previous chapters, I have attempted to highlight how ways of speaking about diabetes are already dialogic. Both health professionals and laypersons draw upon and evaluate multiple ways of knowing in their communications with and about one another. Building upon this recognition, I suggest that in order for health educators to engage most effectively with all these interacting discourses, they need to attend more to the dialogic nature of knowledge production and transmission, setting up explicit opportunities for dialogue about cultural habits, socio- economic context, and expert discourses. In other words, it would be most useful to approach the vernacular as a discursive space where negotiations are already taking place rather than as a set of identifiable forms and expressions that fall under the label of
“culture.”
The formulation of the vernacular I am suggesting here resonates with folklorist
Leonard Primiano’s critique of scholarly identifications of institutional religion as
“official religion.” He argues that, “To continue to compare the vernacular religious ideas of people of any culture to the construct, ‘official religion,’ is to perpetuate the value judgment that people's ideas and practices, because they do not represent the refined statements of a religious institution, are indeed unofficial and fringe” (1995:46).
In contrast, Primiano defines vernacular religion as “religion as it is lived: as human
162 beings encounter, understand, interpret, and practice it" (1995:44). Within this framework, attention shifts to how people make meaning as the distinction between official and unofficial is no longer foregrounded.
While Primiano’s approach to the vernacular is especially relevant here – as I am suggesting that health educators should engage more self-consciously with how people encounter, understand, interpret, and practice different ways of knowing – it is important to recognize that in contexts of diabetes education more is at stake than value judgments; misinformation in relation to diabetes can lead to health complications and even death.
Scientific knowledge does help people live longer, healthier lives, so within the vernacular framework I am suggesting, unofficial cultural ways of knowing are not inherently superior to more official scientific ones. At the same time, though, this framing of the vernacular does open up a discursive space where the instability of knowledge claims can be addressed explicitly, where all mechanisms of knowledge production and transmission are open to questioning. Scientific and medical knowledge emerge in dialogue just as culture does.100 Also, like culture, science is very much subjected to institutional reification. The approach I am suggesting allows for educators to use both science and culture as resources in people’s individual struggles with diabetes without necessarily approaching them as static forms.
100 Noyes makes a similar point when she writes: Science reduces reality in an effort to understand it but it also properly lays itself open to an ongoing process of collective correction and revision. While science as converted into institutional practice has often not lived up to its own ideals, its authority legitimating various kinds of oppression, we can nonetheless recognize that science’s own ideology gives us the tools to make this critique and that there is still a qualitative difference in openness to revision between, let’s say, evolutionary theory and intelligent design. ( 2008:40) See also Montoya (2007)
163 The move toward complicating more rigid categories of knowledge is not a novel concept, as evidenced by the distinction between Mode 1 and Mode 2 knowledge production discussed by sociologist Michael Gibbons and his colleagues. According to their thesis, Mode 1 knowledge is disciplinary, homogenous, and hierarchical, dealing with the realm of the universal. Mode 2 knowledge, on the other hand, “is carried out in a context of application…[and] includes a wider, more temporary and heterogeneous set of practitioners, collaborating on a problem defined in a specific and localized context”
(Gibbons et al. 1994:3). While Mode 1 knowledge, recognized as durable and all- encompassing, depends on institutional processes of specialization and professionalization, Mode 2 knowledge emerges in temporary transdisciplinary networks to address particular problems in their local contexts.
At the nodes of these networks in Mode 2 knowledge production, what emerges from the transdisciplinary interactions to solve the problem at hand is more valuable than more traditional, institutionally-verified categories of knowledge based on epistemic identities. Ronald Barnett notes, “Universal knowledge is not the kind of knowledge to enable one to get on in the world; at any rate, not in this crazy, multicultured, highly complex and incessantly changing world. Attention to the immediate, the local, is everything” (2005:268). Universal knowledge is not satisfactory to deal with the immediacy of problems in their real world contexts. As a rigid boundary between credible and questionable knowledge is increasingly difficult to define, according to
Barnett, opportunities open up for new voices, ones carrying different types of knowledge that have not always been recognized as credible in institutional settings.
164 There is great potential for new interactive, collaborative approaches in the fight
against diabetes at the level of policy, and already community activists, physicians,
scientific researchers, urban planers, food corporations, and politicians, among others, are
coming together to generate ideas for enacting structural changes for creating healthier
environments. Indeed, policymakers are increasingly recognizing that structural
inequalities are a necessary site of intervention in the ongoing fight against diabetes and
its complications. Solutions at the level of policy, however, are slow to come into being and take effect. In the meantime, there remains a strong need for individuals to be able to
respond to their own lived experiences with diabetes. Calling attention to the discursive
situations of health education, I seek to inform interventions at this level of situated
response. More specifically, I suggest that, by creating spaces for improvisational
dialogue, the collaborative, heterogeneous, problem-based networks characterizing Mode
2 knowledge production may help enact lifestyle changes.
In shifting attention from “culture” to “vernacular,” it should be clear that I am
not seeking to extract culture from institutional engagements with the vernacular, for this
concept has much to offer in health education efforts.101 As I discussed earlier, a key
problem with the use of the concept of culture by health professionals has been the assumption that the term is referentially stable, that is, that the meaning of the term remains constant regardless of its context of use. Bonnie Urciuoli takes a similar critical
look at institutional uses of the concept of culture, looking particularly at the work this
concept does in different communicative contexts at a liberal arts college. She describes
how, “People see themselves ‘talking about the same thing’ across those fields insofar as
101 For example, often inherited beliefs and nutritional habits are useful and very much in line with more official recommendations for healthy living. 165 they are using the same referring expressions, but the indexical orderings of those
expressions is subject to considerable variation” (Urciuoli 2009:22). Urciuoli begins by
looking at entextualized uses of culture in the college’s web pages, uses disconnected
from the direct experiences of those they reference, before turning her attention to how
students themselves use the concept of culture in their spoken discourse. While she
recognizes that students’ uses of culture in reference to practices, knowledge, and values
map onto entextualized uses of the term, their complex usages also reveal that their
experiences do not fit cleanly into the categories put forth by institutions. She writes:
We for these students derives not from a preexisting cultural classification but
from their perception of shared conditions – urban, non-white, largely working-
class – structuring habitus (Bourdieu 1977), and they routinely refer to culture in
ways that presuppose its equation with those conditions (Urciuoli 2009:29).
At the same time as institutions categorize people through culturespeak, people use the term alternatively to index shared experiences of inequality, which can then become the basis of community inspiration and positive action.
Over the course of my fieldwork, it was not uncommon to find instances of
laypersons’ culturespeak in relation to diabetes that indexed quite complex relationships
with others. The value of culture, I found, came from the dialogue it generated based on
the shared conditions it evoked in conversations. Indeed, culture has great potential for
deepening the ephemeral, problem-based networks of Mode 2 knowledge production
described above. When there are shared everyday experiences, newer topics like diabetes
emerge in preceding conversations, intensifying the connection and the basis of exchange
beyond the issue of diabetes. This was the case during the reflection on soul food that
166 took place during the story circle I described in Chapter 1, where the speaker connected
the African American participants’ need to change their lifestyle habits with their shared
history of slavery.102 Later on in the story circle, another participant referred back to what he said when talking about her own struggles with the disease, focusing on the specific culturally-marked dishes he identified:
I love to cook, I like to cook, but I’ve learned to cook vegetable not with the
fatback like he said but with olive oil ((that’s right)) olive oil, and one of the
things you have to learn when you’re trying to make the seasoning like with the
fatback is season! It’s the seasonings you put in ((that’s right)), and I have had so
many people, I make sweet potato pie, that’s why I said sweet potato pie before
[referring to an earlier topic of foods that people missed] I make it with Splenda,
ok, and I give it to everybody. They think they’re eating regular sweet potato pie
[laughter] and they brag about it, and then I say y’all just ate diet pie and they are
just blown away, you know what I mean? ((mmhmm)) When I tell them about
greens and things they are just blown away because they can’t believe that I didn’t
put any fatback, hamhocks, la-da-da-da-da, so on and so forth. Sometimes I make
it with turkey smoked sausage if I know I’ve got members that just gotta have that
meat in there, you know what I mean? But most of the time I don’t. You have
people in your family that don’t want to change things, they want things to stay
the same, but you cannot, if you have diabetes you CANNOT keep things the
102 The majority of examples of cultural engagement I present in this dissertation refer to African American culture, in part because I found these examples to be the most prevalent in my fieldwork data. It is important to acknowledge, however, that complex engagements with the concept of culture are not limited to African Americans, as I have found similar moves happening in reference to other cultural backgrounds as well. 167 same, you understanding what I’m sayin’? ((yes)) You cannot keep things the
same, so you know it’s always a work in progress…
Such deepening of networks is especially important in cases like diabetes, where the
move toward lifestyle changes stems from necessity, not desire. People with diabetes are
not a self-selecting group, so their uniting force in the dialogic spaces I am suggesting is
not one they have selected for themselves. They are not choosing to change their lifestyle
and food choices primarily to reach personal goals (e.g., to be more attractive) or for ethical reasons (as do many vegetarians). The problem to be solved for people with diabetes– managing blood glucose levels and avoiding the long-term physical complications – has been imposed upon them rather than sought out.103 For this reason, the emerging dynamics of knowledge production and transmission will be stronger – and the lifestyle changes potentially more sustainable – if grounded in shared everyday experiences, so that the changes in food habits can be recognized as familiar and palatable.104
Ultimately, though, it is imperative to recognize that individuals’ relationships with cultural habits do not exist in isolation. These habits are very much intertwined with socio-economic factors, some that people take for granted and some that become the
103 At the same time, I also encountered numerous people with family histories of diabetes seeking out information on healthy lifestyle choices they could adopt to avoid getting the disease themselves.
104 I draw here on this term as discussed by Lucy Long, who writes: The realm of the edible consists of cultural categories of what can and cannot be eaten, in the sense that one’s humanity is tied to observing such categories…The realm of the palatable is an aesthetic rather than a cognitive one, dealing with what is considered pleasing within a culinary system. Foods may be considered edible, but their selection for consumption will depend on whether or not they are considered savory, appetizing, or appropriate for particular contexts. (2004:32-33) Though Long describes palatability in relation to the conceptual framework of culinary tourism, it is also relevant to the present discussion, given that “producers, individuals, or institutions attempting to present potentially other foodways must take into account the foodways system of their audience” (Long 2004:32).
168 subject of critical questioning or active resistance. Additionally, diabetes affects so many different aspects of a person’s life, including one’s body, family dynamics, and sense of self, that to effectively fight diabetes in a sustainable manner, people need to draw on a range of resources. Individual struggles with diabetes are heavily enmeshed with larger contextual forces, so that the ‘I” story and the “we” story cannot always easily be separated. Efforts to teach people with diabetes strategies of self-management need to engage directly with these forces. I suggest, then, that the contextualization practices accompanying cultural forms and habits offer richer resources for health educators than the forms and habits themselves.105 By creating spaces for explicit contextualization and response, improvisational dialogue becomes a valuable tool for more effectively engaging with the process of how people create interpretive frameworks that accommodate different experiences and ways of knowing, even ways of knowing that may seem to contradict one another.
I use the term improvisational here to highlight the emergent, rather than scripted nature of the dialogues I am suggesting. According to the Oxford English Dictionary, improvisation refers to “The production or execution of anything off-hand; any work or structure produced on the spur of the moment.” While this definition emphasizes production (not merely performance) in the moment, it is important to remember that improvisation does not stem from nothing. An improvisational theater performance, for example, while unique in relation to other performances, depends on the background of the performer, including his training and the life experiences he can draw from to create meaning in the present performance. Thus, in calling for spaces for improvisational
105 We see this clearly in the soul food comparison I offered in Chapter 1. 169 dialogue, I am also calling for health educators (and those who train them) to consider
what background and training they will need to be able to create these kids of kind
dialogic spaces.
A key element here is for health educators to see themselves as choreographers of
dialogue rather than primary knowledge bearers, giving significant attention to the
strategies they can use to encourage explicit dialogue, ranging from how participants
should sit in relation to one another to how to demonstrate a clear recognition that the
experiences of others are credible sources of knowledge. Contestations and evaluations
of knowledge claims are already taking place. It is therefore in the best interest of health educators not only to be aware that these evaluations are happening but to be open and willing to engage with them respectfully in spaces where dialogue can take place. Also, educators need to recognize that their clients are already taking part in processes of improvisation. In his essay on food choice and identity, for example, folklorist Michael
Owen Jones points out:
People derive ideas and procedures [of food choice] from multiple sources such as
their interactional, communicative, and experiential networks (Blumenreich and
Polansky 1974); the media; health manuals; and so forth. They manage to
integrate some of these notions into a personal system of beliefs and practices (a
process that has not been adequately studied; see Brady 2001:vii; Hufford 1998).
Although the configuration is unique, most of the components are not” (Jones
2007:151, emphasis added).
170 Health educators’ awareness of these different components and knowledge networks, not as static things but as processes of interaction, can contribute greatly to their goals of inspiring healthy lifestyle changes.
By way of conclusion, I offer performance as a useful conceptual framework for creating these types of dialogues. The classic definition of performance in folklore studies involves a performer’s “assumption of responsibility to an audience for a display of communicative competence” (Bauman 1977 [1984]:11; see also Hymes 1981). This definition calls attention to the audience’s role in shaping the performance’s meaning, as the performance inherently includes an invitation for evaluation from the audience. The meaning of the performance comes from the interactions between performer and audience, where the audience’s responses are just as worthy of scholars’ attention as the performer’s words.
Performance also offers a level of distancing for both the performer and audience members, which becomes particularly apparent when we look at performances of personal experience narratives. As Kristin Langellier and Eric Peterson explain, “As a communication practice, performing narrative makes conflict over experience, speaking, and identity concrete and accessible” (Langellier and Peterson 2004:29). Performed narratives, set aside from everyday talk, allow for conflicts to become objects of reflection. In the examples I presented in Chapters 3-5, my analyses focused on how each performer used the performance space to make visible the interactions between different ways of knowing as they recounted their own experiences with the disease. In the process, I attempted to show how the performance strategies of each storyteller
171 worked to draw connections between the experiences of the narrator and the experiences
of the audience members.
While certainly valuable, drawing connections between the performer’s and the
audience’s experiences is just one step in effectively engaging with the lifeworlds of
others. There also needs to be opportunities for audience members to give voice to their
own evaluations. If opening explicitly dialogic spaces is the goal, the question then
arises: What specific strategies can educators use to make this possible? To answer this
question, I need to continue doing fieldwork, preferably working in collaboration with
health educators who see the value in creating these dialogic spaces. The examples I
introduced in the previous chapters, though, may point us into productive directions.
In Chapter 4, I discussed how Dr. Jeff Levine’s staged performance, putting so much emphasis on individual choice, ran the risk of closing off opportunities for dialogue because it left no room for experiences that did not fit into the narrative structure of his story. I must acknowledge here, though, that The Biggest Loser storyline has inspired many people to adopt healthier lifestyles. The internet has provided a meeting place for many people to share their experiences of how they have taken inspiration from the successful contestants on the show.106 One potential avenue of future research, then,
would be to explore how health professionals could work with emerging online
communities as sites of vernacular response in their educational efforts.107
In contrast to Levine’s performance, the other performance events I analyzed
attended more to the obstacles standing in the way of entering the successful storyline
106 See, for example, http://www.trendhunter.com/trends/the-biggest-loser-before-after, http://61marathoner.blogspot.com, and http://www.thebiggestloserlover.com. 107 Diane Goldstein (2000) has already begun to explore online communities as sites of vernacular theorizing. 172 that Levine performed. In constructing community to help fill the lack of structural support for members of at-risk communities, these performances demonstrated the importance of creating spaces where vernacular response could take place face-to-face, providing the possibility for immediate feedback and deeper reflection on the power dynamics shaping authoritative claims to knowledge. In Chapter 3, the intimate nature of the story circle, where participants sat in a circle and everybody was given a chance to speak, created clear opportunities for conversations to emerge in relation to Bill
Thompson’s personal narrative performance. I do not think, though, that such an intimate setting is necessary for creating spaces of explicit dialogue. For example, in Chapter 5, I began to discuss Robbie McCauley’s Sugar – a staged, self-conscious display of dialogues already happening – in terms of its pedagogical potential. While not framed as educational tools, the performances I described and analyzed demonstrate key elements of the approach I am suggesting here. First, these performances constructed the process of talking as a resource, working to invoke responses and to initiate conversations.
Second, they made explicit the multiple discursive negotiations people participate in when trying to make sense of diabetes, drawing upon and critiquing both official and unofficial modes of knowledge. In addition, the conversations emerging during the talkbacks changed every time, opening up spaces for improvisational rather than scripted interactions with people in the audience. Thus, through her staging of critical dialogue and talkbacks, McCauley created explicitly dialogic spaces for situational synthesis and response.
Indeed, as Ann Nyman explains in relation to what she terms the “survival aesthetic” of Robbie McCauley’s performances, “Dialogue across difference, with all its
173 baggage and misunderstandings, is both the subject of this work and the work we must
do, in the interest of survival” (1999:585). While Nymann writes this in relation to a broader context of racial inequalities in the United States, I present the possibility that
dialogue across difference in terms of lay and expert knowledge generates resources for
survival in the fight against diabetes. People are already doing what they can to make
sense of and live a fulfilling life when diagnosed with diabetes. Incorporating a little
Sugar into their efforts, health educators would benefit from an honest engagement with
– and willing participation in – these vernacular processes.
174
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APPENDIX A: Transcription Conventions
Unless specifically noted within the text, I used the following conventions while transcribing interview and performance texts.
Plain text primary speaker’s words
((plain text)) other people’s words
((italics)) other people’s actions
[italics] primary speaker’s actions
[plain text] researcher’s explanation
… omission from transcription
CAPITALIZED increase in volume
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