)DWQHVV0HGLFDOL]DWLRQDQG6WLJPD 2QWKH1HHGWR 'R%HWWHU Daniel S. Goldberg Narrative Inquiry in Bioethics, Volume 4, Number 2, Summer 2014, pp. 117-123 (Article) 3XEOLVKHGE\7KH-RKQV+RSNLQV8QLYHUVLW\3UHVV DOI: 10.1353/nib.2014.0053
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NARRATIVE SYMPOSIUM
Commentary Fatness, Medicalization, and Stigma: On the Need to Do Better Daniel S. Goldberg1,* 1) Brody School of Medicine *Correspondence concerning this article should be addressed to Daniel S. Goldberg, J.D., Ph.D at the Department of Bioethics & Interdisciplinary Studies, Brody School of Medicine, East Carolina University, 600 Moye Blvd, Mailstop 641, Greenville, N.C. 27834. Email: [email protected]
Conflicts of Interest. The author reports no conflicts of interest. Acknowledgments. The author would like to thank graduate student and activist Amanda Levitt and nutritionist and activist Michelle Allison for reading and commenting on a draft of this commentary. Abstract. This article comments on a collection of remarkable narratives authored by fat writers addressing the American Medical Association’s decision to label obesity a disease. Endeavoring to avoid what has been termed “thinsplaining,” the commentary examines the voices of the writers in the hopes of identifying key themes and points that emerge from these fat narratives. The commentary canvasses the writers’ perspectives on topics such as the medicalization and pathologization of fat, the Western and especially American tendency to emphasize individual culpability for fatness, and, of course, the horrific commonality and intensity of fat stigma. Stigma is a particular focus for the commentary, both because it is a principal theme in the collection, and also because it is important to understand precisely what stigma is and its deep connections to larger macrosocial structures. The commentary concludes with a simple admonition, gleaned from the narratives: we should strive to do better. Keywords. Fat, Fat Studies, Individualism, Medicalization, Narrative, Obesity, Stigma
W
riting this commentary makes me nervous. First, I am mindful of a mentor’s vehement admonition to a student interested in collecting narratives of illness: “People’s stories are not just fodder for your work!” Some years later, I still think of this warning. Second, there is a significant danger of what has been termed “thinsplaining” (ArteToLife, 2012; O’Connor, 2013). “Splaining” is a general process by which a privileged figure who is nevertheless an outsider “splains” to a marginalized insider the nature of the latter’s own experience (see also “whitesplaining,” “mansplaining,” etc.). I enjoy thin privilege, which
makes commenting on narratives of fatness somewhat perilous ground to traverse. The two strategies I rely on for avoiding thinsplaining are related: first, to listen carefully (“listen thrice before speaking once”) to the voices of the writers of this remarkable collection of stories, and second, to take a bottom–up approach that examines the narratives for important themes and points that emerge from the texts themselves. The hope is that doing so alleviates at least some of the risk of imposing a privileged framework a priori that may overlook key points or, worse, may subsume the writers’ individual and collective voice(s) in the interest of making theoretical points.
Narrative Inquiry in Bioethics Volume 4.2 (2014) 117–123 © 2014 by Johns Hopkins University Press
118 Narrative Inquiry in Bioethics • Volume 4 • Number 2 • Summer 2014
Even calling the collection in this issue “illness narratives” is inaccurate, since the question at hand is the legitimacy and consequences of the American Medical Association’s (AMA) decision to label obesity a disease. It is difficult to believe that the AMA is unaware that the concept of disease is a social construction, and that simply declaring a risk factor—itself a fraught concept (Greene, 2008; Rothstein, 2008)—a disease by fiat neither decides the matter nor avoids any of the complexities and ambiguities that obtain in framing disease (Rosenberg & Golden, 1992). At issue, of course, is the medicalization of obesity, a point which is not lost on the writers. One of the most enduring and effective challenges to such medicalization arises from disability studies. According to the basic critique, the problem is not so much with impaired bodies but with social structures (or lack thereof) that disable persons with diverse functionings and body types. Thus, Lauren Moore points out that clinical settings are often poorly equipped to accommodate fat bodies:1 Chairs in waiting rooms and treatment rooms may be too flimsy for me, or have arms that prevent me from using them. Sometimes I attempt to sit on an examination table and it groans, or I will be asked not to sit on it at all. More than once I have had to stand during my appointment, or
1 In this commentary, I eschew the term “obesity” and instead exclusively use the terms “fatness” and “fat.” Scholars and activists alike have set about to reclaim the word “fat” “both as the preferred neutral adjective (i.e., short/tall young/old, fat/thin) and also as a preferred term of political identity. There is nothing negative or rude in the word fat unless someone makes the effort to put it there” (Wann, 2009, xii). In addition, the term “obesity” medicalizes fatness. This is not only problematic to the extent that medicalization is a problem, but also for purposes of this commentary is question–begging insofar as the issue at hand is the propriety of a more far–reaching medicalization & pathologization of fatness. One of the writers in the collection, Karin Kwambai, agrees, noting that “‘obesity’ is a medical term that strips people of their complex humanity. I actually prefer being called fat.”
ask for another chair, or sit on the floor whilst waiting to see someone.
The social model critique emphasizes the inadequacy of the implication that, in Moore’s words, it is “not [doctors’] job to take care of me but my job to change and accommodate them.” Moreover, as Foucault (1994) explains, the geography of the clinic shapes the geography of the therapeutic relationship. Thus, Moore notes: “[T]he physical limitations of a doctor’s office are emblematic of the relations between patient and doctor.” Sarah Bramblette notes that doctors’ offices should “have high capacity scales,” and puts the metaphorical point even more starkly in her literal description of where she was compelled to find a suitable scale: “Patients should not have to weigh themselves in a junkyard.” Weighing oneself is of course a manifestation of the movement towards the quantified self, a movement that, like medicalization itself, is a framework powerful enough both to help make meaning out of health and illness experiences and to work great mischief (Lupton, 2012). Multiple narratives in the collection emphasize the positive aspects of tracking one’s decreasing weight or body fat percentage at the same time that an anonymous writer explains that “[s]tepping on the scale was like the final judgment. The scale did not measure weight; it measured value. I would see the number, as would the person weighing me, and my failure, as a person, would be evident.” For this writer, the connection between fatness and moral failing was palpable: “In my family being overweight was tantamount to sin.” I have argued elsewhere that an attribution between sin and suffering is especially powerful in making sense of illness in Judeo–Christian cultures insofar as it imposes order on the problem of evil (Goldberg, 2010). As applied to fatness, the construct suggests that those who are fat are such because they have done something to deserve it, and it is because they have done something to deserve it that they are fat. People, explains Kwambai, “look at me with disgust and hatred.” Moreover, as this language suggests, the sin–suffering link is cousin to stigma, a principal theme running through much of the collection.
Obesity
Solid evidence suggests that fat stigma is rampant (Puhl & Heuer, 2010). It is generally counterproductive in reducing obesity (presuming for the moment that the reduction of fatness is a legitimate public health goal) (Puhl & Heuer, 2010). Yet even if it were highly efficacious, fat stigma is morally indefensible in the vast majority of cases (Goldberg & Puhl, 2013). The term “stigma” submits to a variety of meanings, but in health contexts proceeds via a marking stage in which privileged in–groups brand members of an out–group as different on the basis of a demographic characteristic shared by members of that out–group (Link & Phelan, 2006). This so–called difference criterion is necessary but insufficient to establish the presence of stigma. After an out–group has been marked as different, the in–group must also assign notions of deviance to the out–group (typically on the basis of the shared demographic characteristic) (Link & Phelan, 2006). Marking of difference combined with assignations of deviance is a capsule formulation of stigma, at least in health contexts. Note also that stigma is inextricably linked to social power structures, because in–groups by definition must possess some quantum of privilege sufficient to mark an out–group as different (Katzenbuehler, Link & Phelan, 2013). (This is entirely consistent with the fact that members of groups may be privileged in some contexts and marginalized in others). Stigma therefore reflects social inequities, but may also intensify them inasmuch as there is increasing evidence that stigma is an independent and powerful determinant of health outcomes.2 The collection is replete with tropes of stigma, from a variety of sources. Jennifer Hansen answers the question “Have I ever felt stigmatized by my weight?” by ridiculing its obviousness: “Well, I exist in public, so yes.” Not all who are stigmatized do exist in public; a well–known feature of stigma is the ways in which, where passing is impossible, the stigmatized person may simply choose to
2 Readers interested in this point should examine the February 2014 issue of Social Science & Medicine, a theme issue on “Structural Stigma and Population Health.”
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avoid public appearances to minimize the need to endure stigma. “For years,” writes Judith Bruk, “I engineered my life so I would only go out of my house when absolutely necessary . . . I went for years without going to a movie, shopping for clothes in a store, eating in a restaurant, gardening, or any of the other activities I once enjoyed.” Health care providers are a common source of stigma in the collection. Christine R. Brass recounts numerous stigmatizing experiences with health care providers—one who urged her to apply for the television show “The Biggest Loser,”3 and another who casually instructed then 19–year–old–Brass’s mother, “[i]f you want her to look better, make her lose weight . . .” Yet one of the keys in understanding stigma is to perceive it as a social and socialized process. Despite the understandable colloquialism, it is not accurate to say that an illness or risk factor stigmatizes a person. It is always people who stigmatize other people. Some demographic characteristics, such as fatness, may for a variety of reasons be a particularly active axis for such stigma. But it is we who stigmatize, not disease entities or risk factors. To that end, the social structures that create and reify stigma are powerful enough to shape the attitudes, practices, and beliefs of a variety of actors beyond health care providers. We have seen this already—the anonymous writer above indicates that she felt stigmatized by her family. This is not uncommon in chronic illness contexts at least in part due to caregiver exhaustion; the strongly negative dispositions towards fatness in U.S. society and the sin–suffering link suggests some reasons why family stigma towards fat persons might be at least somewhat unsurprising. (Needless to say, the fact that family stigma of fat family members may be unsurprising should not be taken as a justification for that stigma) (Allison, 2014).
3 Canadian physician and obesity expert Yoni Freedhoff recently termed the program an “emotionally and physically abusive, misinformative, horror show” (2013). Yoo (2013) documents that viewers of the program were more likely to attribute weight control to personal responsibility, the latter of which predicts fat stigma.
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There is one more class of persons that seem to stigmatize the writers in this collection: themselves. Although self–stigma at first glance may seem implausible, it does happen, and for understandable reasons. When members of an out–group, who may already be marginalized and disadvantaged along a variety of social axes, have been instructed for weeks, months, and years that a particular condition spoils their identity and renders their entire person deviant, it is not surprising that at least some such persons may internalize that message. Thus, Bruk writes, “I was completely convinced that I was obese because I was a bad, weak–willed, or otherwise psychologically unhealthy person.” The anonymous writer would in weighing herself “be declared guilty of the worthless grub that is me.” Jeremy Shermak reflects on his appearance in the exam room mirror, the “oversized breasts and ‘fat roll’ oozing out from my pants . . . I hated myself.”4 Some, like Hansen, reject such internalization: “Do I get to be classified as a good fatty if I tell the right tale of woe about my obesity? I used to play that game . . . Eventually, I realized that I was in effect begging pardon for existing, so I quit doing it.” Similarly, Moore notes that “[w]hen I was on a diet, I was congratulated and treated like a human being. When I’m not on a diet and refuse to go on one, I’m deluded, belligerent, and have mental health problems.” In any event, it is common enough for proponents of medicalization to argue that such frames help ameliorate stigma inasmuch as recasting fatness as a disease somehow eliminates a fat person’s culpability for their fat body. However,
4 Although I believe that others ought not stigmatize people on the basis of fatness, I leave open the question of whether fat self–stigma is also morally problematic. This latter inquiry is fraught and complex, and cannot be adequately addressed herein. My sense is that while we can and should criticize moral agents for stigmatizing others, too much emphasis on this smacks of methodological individualism that pays insufficient heed to the structural aspects of stigma, the social processes that perpetuate and sustain stigma, whether directed at others or at oneself.
as Buchman et al. note (2013), there is significant evidence to the contrary; in some health paradigms, medicalizing a phenomenon can actually intensify stigma. Although the mechanisms for such a result are not entirely clear, one possibility is that the metaphorical framing of a phenomenon as a disease entity—for medicalization is nothing if not metaphorical—ultimately fails to move attention away from the embodied sick (or in this case, fat) person. As Sontag (2001) pointed out in 1977, and as Abraham Fuks (2009) forcefully reiterated, a war on cancer often enough becomes a fight against people who have cancer. Hansen makes exactly this point as to fatness: “From a fat person’s perspective, the ‘war on obesity’ is a war on fat people.” She is extremely skeptical that framing fatness as a disease will help: “Being officially labeled sick may change the proportion of condescending, pitying jerks to nasty, name–calling jerks.” And Moore concludes her narrative with a similar point: [t]he AMA’s decision to further medicalize my body and refer to it as disease—a body that I love, that is carrying me around with no health problems, is just another reason for me to fear the medical establishment that wants to hurt me and have me thank them for it.
In addition, stigmatization flowing from the medicalization of fatness could extend into policy discourse, as Michelle Allison points out: “[M] edicalizing a physical trait also opens the pathway to framing [fat] activists as disease denialists . . . if obesity is declared a ‘disease by fiat’ . . . then [anyone] not denouncing obesity and promoting weight loss could be painted as a denialist” (2014). For many of the writers, themes of responsibility for fatness and its diminution dovetail with an emphasis on individualism. The anonymous writer echoes a common theme in pointing out that the vast majority of diets do little over time other than cause weight cycling, an effect that can be both psychosocially damaging as well as carry its own health risks. “If this rate of treatment failure were applied to heart disease, it would be a national scandal. Instead, if a diet fails and the person regains the weight, something is wrong with the dieter.” Bruk expresses frustration with a
Obesity
physician who informed her that “I had a disease that is one of the top–ten leading causes of death in the U.S. [and] then basically told me to go out, find, design, and implement a cure for myself.” The inadequacies of relying on individual persons to resolve health problems—again, presuming fatness is a health problem, which it may or may not be in any given case (Saguy, 2013)—are in part captured in the social model critique, but arguably go beyond such criticisms as well. Public health, and certainly clinical medicine in the U.S., is dominated by methodologically individualist approaches in the sense that the individual agent is typically the node for the given health intervention (Goldberg, 2012). It is the individual that is adherent or not to a medication regiment, or implements so–called lifestyle changes, or avoids risky health behaviors or seeks out salubrious behaviors. However, methodological individualism in health promotion of any kind is infirm both because it is generally ineffective, and because insofar as it is effective, the evidence strongly suggests that it is the affluent that are better able to capture the benefits of individualistic health interventions. This latter point means that such interventions have the unfortunate tendency to expand existing health inequities, which may well be incompatible with mandates of justice (Goldberg, 2012). Moreover, an immense amount of epidemiologic evidence points to the inordinate, multifactorial complexity of fatness/thinness (Saguy, 2013; Gard & Wright, 2005). This point does not deny that health behaviors can impact weight status, but does suggest the severe deficiencies in the cultural trope that pins fatness to individual acts. Moreover, the epidemiologic evidence also strongly suggests that many kinds of risky health behaviors are profoundly influenced by upstream social structures, which suggests that even if one grants that ameliorating fatness is a legitimate public health goal, the node of intervention should be said social and economic determinants rather than individual agents (Goldberg, 2012). Kwambai emphasizes the impact of the “built environment . . . environmental exposure (endocrine disrupting
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chemicals), gut flora, and social determinants,” and she implores health care providers to “[s]top blaming the individual and stop focusing only on food and exercise.” This latter clause shows well how tropes of stigma manifest in the peculiarly American emphasis on individualism and in so doing relegate macrosocial conditions to the background. There is so much more that should be said about the stories in this collection, and the above discussion but touches on a few of the themes that struck this reader as noteworthy. In concluding, it is worth thinking about the role of health care providers in helping those fat persons who seek their aid, regardless of whether fatness is fairly deemed a disease or not. (This does not necessarily imply that fat persons seek out health care services to lose weight, although certainly some do. Many of the narratives in the collection express the writer’s frustration when, in the process of voicing complaints and seeking aid for health conditions that had in the subject’s view nothing whatsoever to do with fatness, weight nevertheless became a focal point of discussion in the health care encounter). The collection shows an important ambivalence towards health care providers inasmuch as the latter are often excoriated for their attitudes, practices, and beliefs towards the writers; yet, at the same time, many of the writers invest providers with considerable power to ease suffering and repatriate persons dwelling in what Sontag famously termed the kingdom of the sick. This ambivalence is neither surprising nor even particularly uncommon. In American society, health care providers are imbued with soteriological significance (Goldberg, 2006), as the social actors responsible for and capable of saving the unwell. In paradigms of chronic pain—another fraught and deeply contested health condition—ethnographies demonstrate that while pain sufferers report feeling alienated from both intimates and from physicians, they also consistently indicate that the latter alienation feels more damaging and more hurtful than the former (Goldberg, 2014). Given that, as Jean Jackson (2005) notes, relationships between chronic pain sufferers and their physicians are among the worst in American medicine, the fact that such
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sufferers still deem alienation from their providers more significant than that from their intimates and caregivers shows the healer’s profound power (Brody, 1993). There is increasing evidence that trust is correlated with health (Ahnquist, Wamal, & Lindstrom, 2010; Mohseni, & Lindstrom, 2009), which may go some way to explaining at least one of the reasons why robust primary care relationships seem to produce better health outcomes. Bramblette expressed relief, after several fits and starts, at being able to find a provider whom she trusted: “What mattered to me and meant the most was that she listened to what I had to say, she read information I gave her and she researched on her own. She did not dismiss me or my condition, as happens more often than not.” Phrased even more succinctly, Kwambai provides a roadmap: “We need providers to act as allies. Listen to us, read what we are writing, ask questions, and be willing to learn from us.” As the collection makes clear, not just providers, but all participants in discourses of fatness, can do better. We should.
References Ahnquist, J., Wamala, S.P., & Lindström, M. (2010). What has trust in the health–care system got to do with psychological distress? Analyses from the national Swedish survey of public health. International Journal for Quality in Health Care, 22, 250–58. Allison, M. (2014). Personal communication with author. ArteToLife (2012). Thinsplaining. This is thin privilege. Retrieved from http://thisisthinprivilege.tumblr. com/post/25654225442/thinsplaining Brody, H.A. (1993). The healer’s power. New Haven, CT: Yale University Press. Buchman, D.Z., Borgelt, E.L., Whiteley, E., & Illes, J. (2013). Neurobiological narratives: Experiences of mood disorder through the lens of neuroimaging. Sociology of Health & Illness, 35, 66–81. Freedhoff, Y. (2013). The real biggest losers? The show’s audience. The Huffington Post. Retrieved from http:// www.huffingtonpost.ca/yoni–freedhoff/biggest– loser–kids–_b_2473934.html Foucault, M. (1994). The birth of the clinic: An archaeology of medical perception. (A.M.S. Sheridan, Trans.) New York, NY: Vintage Books. (Original work published 1973).
Fuks, A. (2009). The military metaphors of modern medicine. Retrieved from www.inter–disciplinary.net/ wp–content/uploads/2009/06/hid_fuks.pdf Gard, M., & Wright, J. (2005). The obesity epidemic: Science, morality, and ideology. New York, NY: Routledge Press. Goldberg, D.S. (2014). The bioethics of pain management: Beyond opioids. New York, NY: Routledge Press. Goldberg, D.S. (2012). Social justice, health inequalities, and methodological individualism in US health promotion. Public Health Ethics, 5, 104–115. Goldberg, D.S. (2010). Job and stigmatization of pain. Perspectives in Biology and Medicine, 53, 425–438. Goldberg, D.S. (2006). Religion, the culture of biomedicine, and the tremendum: Towards a non–essentialist analysis of interconnection. Journal of Religion & Health, 46, 99–108. Goldberg, D.S., & Puhl, R.M. (2013). Obesity stigma: A failed and ethically dubious strategy. Hastings Center Report, 43, 5–6. Greene, J. (2008). Prescribing by numbers: Drugs and the definition of disease. Baltimore, MD: Johns Hopkins University Press. Hatzenbuehler, M.L., Phelan, J.C., Link, B.G. (2013). Stigma as a fundamental cause of population health inequalities. American Journal of Public Health, 103, 813–821. Jackson, J. (2005). Stigma, liminality, and chronic pain: Mind–body borderlands. American Ethnologist, 32, 332–353. Link, B.G., & Phelan, J.C. (2006). Stigma and its public health implications. The Lancet, 367, 528–529. Lindstrom, M., & Mohseni, M. (2009). Social capital, political trust and self–reported psychological health: a population–based study. Social Science & Medicine, 68, 436–43. Lupton, D. (2012). The quantified self movement: Some sociological perspectives. This Sociological Life. Retrieved from http://simplysociology.wordpress. com/2012/11/04/the–quantitative–self–movement– some–sociological–perspectives/ O’Connor, D. (2013). Dan Callahan thinsplains obesity. Bioethics Bulletin. Retrieved from http://bioethicsbulletin.org/archive/dan–callahan–thinsplains–obesity/ Puhl, R.M., & Heuer, C.A. (2010). Obesity stigma: Important considerations for public health. American Journal of Public Health, 100, 1019–1028. Rothstein, W.G. (2008). Public health and the risk factor: A history of an uneven medical revolution. Rochester, NY: University of Rochester Press. Rosenberg, C.E., & Golden, J. (Eds.) (1992). Framing disease: Studies in cultural history. New Brunswick, N.J.: Rutgers University Press. Saguy, A. (2013). What’s wrong with fat? New York, NY: Oxford University Press.
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Sontag, S. (2001). Illness as metaphor and AIDS and its metaphors. New York, NY: Picador Press. Wann, M. (2009). Foreword. In Rothblum, E. & Solovay, S. (Eds.), The Fat Studies Reader (pp. xi–xxvi). New York, NY: New York University Press. Yoo, J.H. (2013). No clear winner: Effects of The Biggest Loser on the stigmatization of obese persons. Health Communications, 28, 294–303.
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For additional information about this article http://muse.jhu.edu/journals/nib/summary/v004/4.2.goldberg.html
Access provided by University of California, San Diego (4 Jun 2015 23:05 GMT)
NARRATIVE SYMPOSIUM
Commentary Fatness, Medicalization, and Stigma: On the Need to Do Better Daniel S. Goldberg1,* 1) Brody School of Medicine *Correspondence concerning this article should be addressed to Daniel S. Goldberg, J.D., Ph.D at the Department of Bioethics & Interdisciplinary Studies, Brody School of Medicine, East Carolina University, 600 Moye Blvd, Mailstop 641, Greenville, N.C. 27834. Email: [email protected]
Conflicts of Interest. The author reports no conflicts of interest. Acknowledgments. The author would like to thank graduate student and activist Amanda Levitt and nutritionist and activist Michelle Allison for reading and commenting on a draft of this commentary. Abstract. This article comments on a collection of remarkable narratives authored by fat writers addressing the American Medical Association’s decision to label obesity a disease. Endeavoring to avoid what has been termed “thinsplaining,” the commentary examines the voices of the writers in the hopes of identifying key themes and points that emerge from these fat narratives. The commentary canvasses the writers’ perspectives on topics such as the medicalization and pathologization of fat, the Western and especially American tendency to emphasize individual culpability for fatness, and, of course, the horrific commonality and intensity of fat stigma. Stigma is a particular focus for the commentary, both because it is a principal theme in the collection, and also because it is important to understand precisely what stigma is and its deep connections to larger macrosocial structures. The commentary concludes with a simple admonition, gleaned from the narratives: we should strive to do better. Keywords. Fat, Fat Studies, Individualism, Medicalization, Narrative, Obesity, Stigma
W
riting this commentary makes me nervous. First, I am mindful of a mentor’s vehement admonition to a student interested in collecting narratives of illness: “People’s stories are not just fodder for your work!” Some years later, I still think of this warning. Second, there is a significant danger of what has been termed “thinsplaining” (ArteToLife, 2012; O’Connor, 2013). “Splaining” is a general process by which a privileged figure who is nevertheless an outsider “splains” to a marginalized insider the nature of the latter’s own experience (see also “whitesplaining,” “mansplaining,” etc.). I enjoy thin privilege, which
makes commenting on narratives of fatness somewhat perilous ground to traverse. The two strategies I rely on for avoiding thinsplaining are related: first, to listen carefully (“listen thrice before speaking once”) to the voices of the writers of this remarkable collection of stories, and second, to take a bottom–up approach that examines the narratives for important themes and points that emerge from the texts themselves. The hope is that doing so alleviates at least some of the risk of imposing a privileged framework a priori that may overlook key points or, worse, may subsume the writers’ individual and collective voice(s) in the interest of making theoretical points.
Narrative Inquiry in Bioethics Volume 4.2 (2014) 117–123 © 2014 by Johns Hopkins University Press
118 Narrative Inquiry in Bioethics • Volume 4 • Number 2 • Summer 2014
Even calling the collection in this issue “illness narratives” is inaccurate, since the question at hand is the legitimacy and consequences of the American Medical Association’s (AMA) decision to label obesity a disease. It is difficult to believe that the AMA is unaware that the concept of disease is a social construction, and that simply declaring a risk factor—itself a fraught concept (Greene, 2008; Rothstein, 2008)—a disease by fiat neither decides the matter nor avoids any of the complexities and ambiguities that obtain in framing disease (Rosenberg & Golden, 1992). At issue, of course, is the medicalization of obesity, a point which is not lost on the writers. One of the most enduring and effective challenges to such medicalization arises from disability studies. According to the basic critique, the problem is not so much with impaired bodies but with social structures (or lack thereof) that disable persons with diverse functionings and body types. Thus, Lauren Moore points out that clinical settings are often poorly equipped to accommodate fat bodies:1 Chairs in waiting rooms and treatment rooms may be too flimsy for me, or have arms that prevent me from using them. Sometimes I attempt to sit on an examination table and it groans, or I will be asked not to sit on it at all. More than once I have had to stand during my appointment, or
1 In this commentary, I eschew the term “obesity” and instead exclusively use the terms “fatness” and “fat.” Scholars and activists alike have set about to reclaim the word “fat” “both as the preferred neutral adjective (i.e., short/tall young/old, fat/thin) and also as a preferred term of political identity. There is nothing negative or rude in the word fat unless someone makes the effort to put it there” (Wann, 2009, xii). In addition, the term “obesity” medicalizes fatness. This is not only problematic to the extent that medicalization is a problem, but also for purposes of this commentary is question–begging insofar as the issue at hand is the propriety of a more far–reaching medicalization & pathologization of fatness. One of the writers in the collection, Karin Kwambai, agrees, noting that “‘obesity’ is a medical term that strips people of their complex humanity. I actually prefer being called fat.”
ask for another chair, or sit on the floor whilst waiting to see someone.
The social model critique emphasizes the inadequacy of the implication that, in Moore’s words, it is “not [doctors’] job to take care of me but my job to change and accommodate them.” Moreover, as Foucault (1994) explains, the geography of the clinic shapes the geography of the therapeutic relationship. Thus, Moore notes: “[T]he physical limitations of a doctor’s office are emblematic of the relations between patient and doctor.” Sarah Bramblette notes that doctors’ offices should “have high capacity scales,” and puts the metaphorical point even more starkly in her literal description of where she was compelled to find a suitable scale: “Patients should not have to weigh themselves in a junkyard.” Weighing oneself is of course a manifestation of the movement towards the quantified self, a movement that, like medicalization itself, is a framework powerful enough both to help make meaning out of health and illness experiences and to work great mischief (Lupton, 2012). Multiple narratives in the collection emphasize the positive aspects of tracking one’s decreasing weight or body fat percentage at the same time that an anonymous writer explains that “[s]tepping on the scale was like the final judgment. The scale did not measure weight; it measured value. I would see the number, as would the person weighing me, and my failure, as a person, would be evident.” For this writer, the connection between fatness and moral failing was palpable: “In my family being overweight was tantamount to sin.” I have argued elsewhere that an attribution between sin and suffering is especially powerful in making sense of illness in Judeo–Christian cultures insofar as it imposes order on the problem of evil (Goldberg, 2010). As applied to fatness, the construct suggests that those who are fat are such because they have done something to deserve it, and it is because they have done something to deserve it that they are fat. People, explains Kwambai, “look at me with disgust and hatred.” Moreover, as this language suggests, the sin–suffering link is cousin to stigma, a principal theme running through much of the collection.
Obesity
Solid evidence suggests that fat stigma is rampant (Puhl & Heuer, 2010). It is generally counterproductive in reducing obesity (presuming for the moment that the reduction of fatness is a legitimate public health goal) (Puhl & Heuer, 2010). Yet even if it were highly efficacious, fat stigma is morally indefensible in the vast majority of cases (Goldberg & Puhl, 2013). The term “stigma” submits to a variety of meanings, but in health contexts proceeds via a marking stage in which privileged in–groups brand members of an out–group as different on the basis of a demographic characteristic shared by members of that out–group (Link & Phelan, 2006). This so–called difference criterion is necessary but insufficient to establish the presence of stigma. After an out–group has been marked as different, the in–group must also assign notions of deviance to the out–group (typically on the basis of the shared demographic characteristic) (Link & Phelan, 2006). Marking of difference combined with assignations of deviance is a capsule formulation of stigma, at least in health contexts. Note also that stigma is inextricably linked to social power structures, because in–groups by definition must possess some quantum of privilege sufficient to mark an out–group as different (Katzenbuehler, Link & Phelan, 2013). (This is entirely consistent with the fact that members of groups may be privileged in some contexts and marginalized in others). Stigma therefore reflects social inequities, but may also intensify them inasmuch as there is increasing evidence that stigma is an independent and powerful determinant of health outcomes.2 The collection is replete with tropes of stigma, from a variety of sources. Jennifer Hansen answers the question “Have I ever felt stigmatized by my weight?” by ridiculing its obviousness: “Well, I exist in public, so yes.” Not all who are stigmatized do exist in public; a well–known feature of stigma is the ways in which, where passing is impossible, the stigmatized person may simply choose to
2 Readers interested in this point should examine the February 2014 issue of Social Science & Medicine, a theme issue on “Structural Stigma and Population Health.”
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avoid public appearances to minimize the need to endure stigma. “For years,” writes Judith Bruk, “I engineered my life so I would only go out of my house when absolutely necessary . . . I went for years without going to a movie, shopping for clothes in a store, eating in a restaurant, gardening, or any of the other activities I once enjoyed.” Health care providers are a common source of stigma in the collection. Christine R. Brass recounts numerous stigmatizing experiences with health care providers—one who urged her to apply for the television show “The Biggest Loser,”3 and another who casually instructed then 19–year–old–Brass’s mother, “[i]f you want her to look better, make her lose weight . . .” Yet one of the keys in understanding stigma is to perceive it as a social and socialized process. Despite the understandable colloquialism, it is not accurate to say that an illness or risk factor stigmatizes a person. It is always people who stigmatize other people. Some demographic characteristics, such as fatness, may for a variety of reasons be a particularly active axis for such stigma. But it is we who stigmatize, not disease entities or risk factors. To that end, the social structures that create and reify stigma are powerful enough to shape the attitudes, practices, and beliefs of a variety of actors beyond health care providers. We have seen this already—the anonymous writer above indicates that she felt stigmatized by her family. This is not uncommon in chronic illness contexts at least in part due to caregiver exhaustion; the strongly negative dispositions towards fatness in U.S. society and the sin–suffering link suggests some reasons why family stigma towards fat persons might be at least somewhat unsurprising. (Needless to say, the fact that family stigma of fat family members may be unsurprising should not be taken as a justification for that stigma) (Allison, 2014).
3 Canadian physician and obesity expert Yoni Freedhoff recently termed the program an “emotionally and physically abusive, misinformative, horror show” (2013). Yoo (2013) documents that viewers of the program were more likely to attribute weight control to personal responsibility, the latter of which predicts fat stigma.
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There is one more class of persons that seem to stigmatize the writers in this collection: themselves. Although self–stigma at first glance may seem implausible, it does happen, and for understandable reasons. When members of an out–group, who may already be marginalized and disadvantaged along a variety of social axes, have been instructed for weeks, months, and years that a particular condition spoils their identity and renders their entire person deviant, it is not surprising that at least some such persons may internalize that message. Thus, Bruk writes, “I was completely convinced that I was obese because I was a bad, weak–willed, or otherwise psychologically unhealthy person.” The anonymous writer would in weighing herself “be declared guilty of the worthless grub that is me.” Jeremy Shermak reflects on his appearance in the exam room mirror, the “oversized breasts and ‘fat roll’ oozing out from my pants . . . I hated myself.”4 Some, like Hansen, reject such internalization: “Do I get to be classified as a good fatty if I tell the right tale of woe about my obesity? I used to play that game . . . Eventually, I realized that I was in effect begging pardon for existing, so I quit doing it.” Similarly, Moore notes that “[w]hen I was on a diet, I was congratulated and treated like a human being. When I’m not on a diet and refuse to go on one, I’m deluded, belligerent, and have mental health problems.” In any event, it is common enough for proponents of medicalization to argue that such frames help ameliorate stigma inasmuch as recasting fatness as a disease somehow eliminates a fat person’s culpability for their fat body. However,
4 Although I believe that others ought not stigmatize people on the basis of fatness, I leave open the question of whether fat self–stigma is also morally problematic. This latter inquiry is fraught and complex, and cannot be adequately addressed herein. My sense is that while we can and should criticize moral agents for stigmatizing others, too much emphasis on this smacks of methodological individualism that pays insufficient heed to the structural aspects of stigma, the social processes that perpetuate and sustain stigma, whether directed at others or at oneself.
as Buchman et al. note (2013), there is significant evidence to the contrary; in some health paradigms, medicalizing a phenomenon can actually intensify stigma. Although the mechanisms for such a result are not entirely clear, one possibility is that the metaphorical framing of a phenomenon as a disease entity—for medicalization is nothing if not metaphorical—ultimately fails to move attention away from the embodied sick (or in this case, fat) person. As Sontag (2001) pointed out in 1977, and as Abraham Fuks (2009) forcefully reiterated, a war on cancer often enough becomes a fight against people who have cancer. Hansen makes exactly this point as to fatness: “From a fat person’s perspective, the ‘war on obesity’ is a war on fat people.” She is extremely skeptical that framing fatness as a disease will help: “Being officially labeled sick may change the proportion of condescending, pitying jerks to nasty, name–calling jerks.” And Moore concludes her narrative with a similar point: [t]he AMA’s decision to further medicalize my body and refer to it as disease—a body that I love, that is carrying me around with no health problems, is just another reason for me to fear the medical establishment that wants to hurt me and have me thank them for it.
In addition, stigmatization flowing from the medicalization of fatness could extend into policy discourse, as Michelle Allison points out: “[M] edicalizing a physical trait also opens the pathway to framing [fat] activists as disease denialists . . . if obesity is declared a ‘disease by fiat’ . . . then [anyone] not denouncing obesity and promoting weight loss could be painted as a denialist” (2014). For many of the writers, themes of responsibility for fatness and its diminution dovetail with an emphasis on individualism. The anonymous writer echoes a common theme in pointing out that the vast majority of diets do little over time other than cause weight cycling, an effect that can be both psychosocially damaging as well as carry its own health risks. “If this rate of treatment failure were applied to heart disease, it would be a national scandal. Instead, if a diet fails and the person regains the weight, something is wrong with the dieter.” Bruk expresses frustration with a
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physician who informed her that “I had a disease that is one of the top–ten leading causes of death in the U.S. [and] then basically told me to go out, find, design, and implement a cure for myself.” The inadequacies of relying on individual persons to resolve health problems—again, presuming fatness is a health problem, which it may or may not be in any given case (Saguy, 2013)—are in part captured in the social model critique, but arguably go beyond such criticisms as well. Public health, and certainly clinical medicine in the U.S., is dominated by methodologically individualist approaches in the sense that the individual agent is typically the node for the given health intervention (Goldberg, 2012). It is the individual that is adherent or not to a medication regiment, or implements so–called lifestyle changes, or avoids risky health behaviors or seeks out salubrious behaviors. However, methodological individualism in health promotion of any kind is infirm both because it is generally ineffective, and because insofar as it is effective, the evidence strongly suggests that it is the affluent that are better able to capture the benefits of individualistic health interventions. This latter point means that such interventions have the unfortunate tendency to expand existing health inequities, which may well be incompatible with mandates of justice (Goldberg, 2012). Moreover, an immense amount of epidemiologic evidence points to the inordinate, multifactorial complexity of fatness/thinness (Saguy, 2013; Gard & Wright, 2005). This point does not deny that health behaviors can impact weight status, but does suggest the severe deficiencies in the cultural trope that pins fatness to individual acts. Moreover, the epidemiologic evidence also strongly suggests that many kinds of risky health behaviors are profoundly influenced by upstream social structures, which suggests that even if one grants that ameliorating fatness is a legitimate public health goal, the node of intervention should be said social and economic determinants rather than individual agents (Goldberg, 2012). Kwambai emphasizes the impact of the “built environment . . . environmental exposure (endocrine disrupting
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chemicals), gut flora, and social determinants,” and she implores health care providers to “[s]top blaming the individual and stop focusing only on food and exercise.” This latter clause shows well how tropes of stigma manifest in the peculiarly American emphasis on individualism and in so doing relegate macrosocial conditions to the background. There is so much more that should be said about the stories in this collection, and the above discussion but touches on a few of the themes that struck this reader as noteworthy. In concluding, it is worth thinking about the role of health care providers in helping those fat persons who seek their aid, regardless of whether fatness is fairly deemed a disease or not. (This does not necessarily imply that fat persons seek out health care services to lose weight, although certainly some do. Many of the narratives in the collection express the writer’s frustration when, in the process of voicing complaints and seeking aid for health conditions that had in the subject’s view nothing whatsoever to do with fatness, weight nevertheless became a focal point of discussion in the health care encounter). The collection shows an important ambivalence towards health care providers inasmuch as the latter are often excoriated for their attitudes, practices, and beliefs towards the writers; yet, at the same time, many of the writers invest providers with considerable power to ease suffering and repatriate persons dwelling in what Sontag famously termed the kingdom of the sick. This ambivalence is neither surprising nor even particularly uncommon. In American society, health care providers are imbued with soteriological significance (Goldberg, 2006), as the social actors responsible for and capable of saving the unwell. In paradigms of chronic pain—another fraught and deeply contested health condition—ethnographies demonstrate that while pain sufferers report feeling alienated from both intimates and from physicians, they also consistently indicate that the latter alienation feels more damaging and more hurtful than the former (Goldberg, 2014). Given that, as Jean Jackson (2005) notes, relationships between chronic pain sufferers and their physicians are among the worst in American medicine, the fact that such
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sufferers still deem alienation from their providers more significant than that from their intimates and caregivers shows the healer’s profound power (Brody, 1993). There is increasing evidence that trust is correlated with health (Ahnquist, Wamal, & Lindstrom, 2010; Mohseni, & Lindstrom, 2009), which may go some way to explaining at least one of the reasons why robust primary care relationships seem to produce better health outcomes. Bramblette expressed relief, after several fits and starts, at being able to find a provider whom she trusted: “What mattered to me and meant the most was that she listened to what I had to say, she read information I gave her and she researched on her own. She did not dismiss me or my condition, as happens more often than not.” Phrased even more succinctly, Kwambai provides a roadmap: “We need providers to act as allies. Listen to us, read what we are writing, ask questions, and be willing to learn from us.” As the collection makes clear, not just providers, but all participants in discourses of fatness, can do better. We should.
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