culture and stigma: adding moral experience to stigma theory
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Social Science & Medicine 64 (2007) 1524–1535
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Culture and stigma: Adding moral experience to stigma theory
Lawrence Hsin Yanga,�, Arthur Kleinmanb, Bruce G. Linka,Jo C. Phelanc, Sing Leed, Byron Goode
aDepartment of Epidemiology, Columbia University, 722 West 168th Street, Room 1610, NY, NY 10032, USAbDepartment of Anthropology and Social Medicine, Harvard University, USA
cDepartment of Sociomedical Sciences, Columbia University, USAdDepartment of Psychiatry, Chinese University of Hong Kong, Hong Kong
eDepartment of Anthropology and Social Medicine, Harvard University, USA
Available online 22 December 2006
Abstract
Definitions and theoretical models of the stigma construct have gradually progressed from an individualistic focus
towards an emphasis on stigma’s social aspects. Building on other theorists’ notions of stigma as a social, interpretive, or
cultural process, this paper introduces the notion of stigma as an essentially moral issue in which stigmatized conditions
threaten what is at stake for sufferers. The concept of moral experience, or what is most at stake for actors in a local social
world, provides a new interpretive lens by which to understand the behaviors of both the stigmatized and stigmatizers, for it
allows an examination of both as living with regard to what really matters and what is threatened. We hypothesize that
stigma exerts its core effects by threatening the loss or diminution of what is most at stake, or by actually diminishing or
destroying that lived value. We utilize two case examples of stigma—mental illness in China and first-onset schizophrenia
patients in the United States—to illustrate this concept. We further utilize the Chinese example of ‘face’ to illustrate stigma
as having dimensions that are moral-somatic (where values are linked to physical experiences) and moral-emotional (values
are linked to emotional states). After reviewing literature on how existing stigma theory has led to a predominance of
research assessing the individual, we conclude by outlining how the concept of moral experience may inform future stigma
measurement. We propose that by identifying how stigma is a moral experience, new targets can be created for anti-stigma
intervention programs and their evaluation. Further, we recommend the use of transactional methodologies and multiple
perspectives and methods to more fully capture the interpersonal core of stigma as framed by theories of moral experience.
r 2006 Elsevier Ltd. All rights reserved.
Keywords: Stigma; Theory; Measurement; China; Moral experience; Mental illness; USA
e front matter r 2006 Elsevier Ltd. All rights reserved
cscimed.2006.11.013
ing author. Tel.: +1 212 305 4747;
5169.
esses: [email protected] (L.H. Yang),
.harvard.edu (A. Kleinman), [email protected]
[email protected] (J.C. Phelan),
du.hk (S. Lee), [email protected]
Introduction
The construct of stigma has generated extensivetheoretical and empirical research, and as theliterature has expanded, so too has reasoning aboutwhat the concept entails. We trace the developmentof the stigma concept, paying particular attention toan evolution in its definition from a construct
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largely grounded in the individual to one rooted insocial space. Next we examine theoretical modelsdescribing how stigma affects people, focusing onhow these models have identified stigma’s socialaspects. This examination of the limited manner inwhich current definitions and theoretical modelsaddress the social dimensions of stigma reveals aneed for an expanded conceptual lens that incorpo-rates moral experience, or what is most at stake for
actors in a local social world. We provide severalexamples of stigma as moral experience, focusing onmental illness in China as an illustration of stigmaas a dynamic psychocultural process. We concludeby describing the impact of current stigma theoryupon measurement, and detail how consideration ofmoral experience will encourage innovative meansof measuring stigma.
Definitions of stigma
We first examine how existing stigma definitionshave delineated this construct, with a particularfocus on how stigma’s social elements have beenconceptualized. Goffman (1963), in his classicformulation, defines stigma as ‘‘an attribute that isdeeply discrediting’’ and proposes that the stigma-tized person is reduced ‘‘from a whole and usualperson to a tainted, discounted one’’ (p. 3). Goff-man views processes of social construction ascentral; he describes stigma as ‘‘a special kind ofrelationship between an attribute and a stereotype’’(p. 4) and avers that stigma is embedded in a‘‘language of relationships’’ (p. 3). In Goffman’sview, stigma occurs as a discrepancy between‘‘virtual social identity’’ (how a person is character-ized by society) and ‘‘actual social identity’’ (theattributes really possessed by a person) (p.2).
Emphasizing Goffman’s idea of stigma as anattribute, Jones et al.(1984) use the term ‘‘mark’’ todescribe a deviant condition identified by societythat might define the individual as flawed or spoiled.Although Jones et al. describe the stigmatizingprocess as relational—i.e., the social environmentdefines what is deviant and provides the context inwhich devaluing evaluations are expressed—theseauthors also emphasize ‘‘impression engulfment’’—a psychological process located within the indivi-dual—as the essence of stigma (p. 9).
Other social psychological formulations havefurther located stigma as a characteristic of theindividual. Crocker, Major, and Steele (1998) alsodefine stigma as occurring when an individual is
believed to possess what they describe as an ‘‘oftenobjective’’ attribute or feature that conveys adevalued social identity within a social context.This identity is then socially constructed by definingwho belongs to a particular social group andwhether a characteristic will lead to a devaluedsocial identity in a given context. Like Goffman,Crocker et al. propose that stigma at its essence is a‘‘devaluing social identity’’ (p. 505). Yet the authorsobserve that stigma is not located entirely within thestigmatized person, but occurs within a socialcontext that defines an attribute as devaluing. Also,these authors cite briefly the influence of powerin determining one’s susceptibility and possibleresponse to stigma.
These social psychological definitions agree thatstigma: (1) consists of an attribute that markspeople as different and leads to devaluation; and (2)is dependent both on relationship and context—thatstigma is socially constructed (Major & O’Brien,2005). In conjunction with the insights provided bya perspective based on evolutionary psychology(Kurzban & Leary, 2001), these conceptualizationscapture many important aspects of stigma. How-ever, these frameworks have also been criticized asneglecting the stigmatized person’s viewpoint and asfocusing too narrowly on forces located within theindividual rather than on the myriad societal forcesthat shape exclusion from social life (Parker &Aggleton, 2003).
Out of these critiques, Link and Phelan (2001)proposed a sociological definition of stigma as abroad umbrella concept that links interrelatedstigma components. Similar to the social psycholo-gical definitions, the first four components of theirdefinition—labeling, stereotyping, cognitive separa-tion, and emotional reactions (added in Link, Yang,Phelan, & Collins, 2004)—identify social processesthat take place within the sociocultural environmentwhose effects can be observed within the individual.Yet the fifth component of Link and Phelan’sdefinition—status loss and discrimination—alsoincludes structural discrimination (when institu-tional practices disadvantage stigmatized groups).Also unique to the conceptualizations considered isLink and Phelan’s idea that the stigma processdepends on the use of social, economic, and poli-tical power that imbues the preceding stigmacomponents with discriminatory consequences.Link and Phelan’s definition thus represents acritical step towards viewing stigma as processualand created by structural power. This becomes
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further illustrated by Das, Kleinman, Lock, Mam-phela, and Reynolds (2001) who, amongst others,showed that the issue of power is often lodged in theapparatus of the State, whose agents and agenciescan stigmatize entire groups.
Social components of the theoretical models of stigma
Just as stigma definitions have increasinglyarticulated the construct as one based on socialprocesses, models of how stigma exerts its negativeeffects have progressively emphasized its socialaspects. Examining models of stigma, includingidentifying whether these models classify outcomesas individualistic or social, further illustrates howthe social domain has been conceptualized in howstigma works. In contrast to the paucity of stigmadefinitions, there is a comparatively large literaturedescribing how stigma affects people; we review thisbriefly (for further reviews, see Hinshaw, 2005;Major, McCoy, Kaiser, & Quinton, 2003; Schmitt &Branscome, 2002; Stangor et al., 2003; Steele,Spencer, & Aronson, 2002).
Several social psychologists have described stigmaas a situational threat; stigma results from beingplaced in a social situation that influences how oneis treated. Jones et al. (1984) conceptualized stigmabased on the processes of cognitive categorization—i.e., stigma takes place when the mark links anindividual via attributional processes to undesirablecharacteristics that lead to discrediting. Subsequentsocial psychological models further incorporate theresponse of individuals to stigma. Crocker et al(1998) included not only the role of social context inshaping identity, but also how individuals cogni-tively maintain integrity of the self and activelyconstruct social identity. Major and O’Brien (2005)integrate an identity threat model—i.e., a transac-tional analysis of stress and coping strategiesenacted by the individual (Lazarus & Folkman,1984)—with stigma. The social elements of Majorand O’Brien’s theory consist of the immediatesituational cues (which convey risk of beingdevalued) and collective representations (knowledgeof cultural stereotypes) that influence appraisal ofthreat to one’s well-being. At the heart of theselatter two formulations is the concept that stigmapredisposes individuals to poor outcomes by threa-tening self-esteem, academic achievement, andmental or physical health.
Other social psychologists have described stigmaas a specific application of stereotyping, prejudice,
and discrimination research (Ottati, Bodenhausen,& Newman, 2005). Here, the social elements ofstigma consist of socially shared cognitive repre-sentations that inaccurately associate individualswith mental illness with certain negative character-istics. Further, the negative emotional reactions(prejudice) or negative behaviors (discrimination) ofstigmatizers can be seen to derive from social‘others’. Paralleling this community model, Corri-gan and Watson (2002) present a social-cognitivemodel of personal response to stigma that initiateswhen individuals with mental illness know of thenegative cultural images that characterize theirgroup (self-stereotyping), which then leads to self-prejudice and self-discrimination. Further, in deter-mining the individual’s personal response to stigma,Corrigan and Watson identify social elements suchas collective representations (cultural stereotypes,perceived social hierarchies, and sociopoliticalideology) activated by cognitive primes (informa-tion from the situation) that influence whether thestigma encountered is appraised as legitimate orillegitimate. Like the other social psychologicalmodels, Corrigan and Watson locate the primaryeffects of stigma on the individual’s emotionalresponse and self-esteem.
Although the full scope of these social psycholo-gical models are too intricate to review here, thesemodels have greatly advanced our understanding ofhow an individual’s stigmatized social identity isconstructed through cognitive, affective and beha-vioral processes. Because these models derive fromsocial psychological theory, each focuses on currentsocial or situational determinants of stigma. Anotherimportant emphasis is that stigmatized individualsactively cope—i.e., through construal, appraisal orother cognitive strategies—with stigmatizing circum-stances. However, an analysis of these models revealsthat they primarily regard the social aspects of stigmaas a psychological variable (i.e., ‘social identity’ asapplied to an individual), as an environmentalstimulus that the individual appraises or respondsto, or as societal or cultural stereotypes. Further,these models restrict the range of coping responses tothe stigmatized individual’s reactions (e.g., cognitivecoping strategies) and the harmful outcomes ofstigma to individual self-processes (e.g., psychologi-cal well-being). These models suffer from limitingconceptualization of the social to those environmen-tal elements of stigma that ‘impinge upon’ theindividual sufferer, who is then viewed as the primarylocus in which stigma processes take place.
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1One other perspective articulated with respect to HIV/AIDS
identifies stigma in a broader framework of power and
domination and as central to reproducing structures of hegemony
and control. Parker and Aggleton (2003) draw from the work of
philosophers and sociologists such as Foucault (1977) and
Bourdieu (1977) who propose that forms of social control are
embedded in established knowledge systems that legitimize
structures of social inequality and thus limit the ability of
marginalized peoples to resist these hegemonic forces. These
authors argue that stigma is utilized by identifiable social actors
who legitimate their dominant societal positions by maintaining
social inequality, and that stigma consequently occurs at the
convergence of culture, power and difference.
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Goffman (1963) did not appear to emphasizesuch an individualistic focus when he describedstigma as a process based on the construction ofsocial identity. Rather, stigma occurs through whatGoffman terms a ‘‘moral career’’ (p. 32): when astigmatized person initially learns society’s stand-point and gains a general idea of what it might belike to possess a particular stigma. Persons withmental illness (a non-visible stigma) thus pass from‘‘normal’’ to ‘‘discreditable’’ status, and if theydisclose their condition, a ‘‘discredited’’ status.Goffman describes transition from each status asresulting from ‘‘control of identity information’’.Thus, in Goffman’s view, stigma occurs as a newsocial identity is assumed through interaction (i.e.,‘‘re-identifying’’) with socially constructed cate-gories.
Other sociological models have also regardedstigma from a symbolic interactionist perspective.Scheff (1966) proposed a ‘‘labeling theory’’ ofmental illness where the application of deviantlabels to individuals led to changed self-perceptionsand social opportunities. According to Scheff,mental illness stereotypes are learned during socia-lization and reinforced daily. Scheff proposes thatonce fully inculcated, the stereotyped ‘‘patient’’ rolemay then emerge as a ‘‘master status’’ due to itshighly discrediting nature (Markowitz, 2005). Uni-form responses from others (such as social exclu-sion) then block attempts to return to ‘‘normal’’social roles. Link, Cullen, Struening, Shrout, andDohrenwend (1989) elaborated upon Scheff’s claimthat the labeling process was the primary cause ofsymptomatic behaviors by formulating a ‘‘ModifiedLabeling Theory’’ that proposed that labeling placesindividuals with mental illness at risk for negativeoutcomes that may exacerbate pre-existing mentaldisorders. According to Link et al., expectations ofdevaluation become personally relevant once officiallabeling occurs during contact with treatment.Negative psychosocial consequences may stem frombeliefs of anticipated rejection or the individual’sresponse to stigma, which are then seen to increasevulnerability to future psychiatric relapse.
Both Scheff’s and Link et al.’s models definestigma as operating primarily in the social sphere—the symbolic interactionist perspective proposes thatobjects in the social world (persons and actions)obtain meaning through social interaction (Mead,1934). Thus, the meaning of behavior (and de-viance) is continuously interpreted through utiliza-tion of language and symbols. Social responses to
behaviors are shaped by shared cultural meanings.Self-conceptions thus arise from perceptions of howothers view and respond to the self as a social object(Markowitz, 2005). ‘‘Role identities’’ (e.g., being‘‘mentally ill’’) form when self-conceptions result inreified social positions that are accompanied withbehavioral expectations. Despite the emphasis ofthese sociological models on the social and inter-active bases of stigma however, research utilizingthese frameworks has largely continued to locatestigma’s effect within the individual stigmatizer orrecipient.
A subsequent framework proposed by Corrigan,Markowitz, and Watson (2004) further expands thesocial mechanisms of stigma by describing thestructural determinants of mental illness stigmathat arise from economic, political, and historicalsources. Intentional institutional discriminationoccurs when the decision-making group of aninstitution intentionally implements policies thatreduce opportunities for a particular group (e.g.,state legislatures restricting people with mentalillness from voting). A second type of structuraldiscrimination takes place when policies limit therights of people with mental illness in unintentionalways. For example, societal policies that limit publicmental health care are typically motivated byarguments that increased mental health coveragewould lead to prohibitively high health care costs.What is key in structural discrimination is that thedecision to stigmatize does not take place at theinterpersonal level. Rather, discriminatory policiesexert their adverse effects via broader, systemicforces.1
Moral experience and stigma
Sociological approaches push us to conceive ofstigma as a social process with multiple dimensions.Stigma is seen to be embedded in the interpretive
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engagements of social actors, involving culturalmeanings, affective states, roles, and ideal types. Asocial dialectic of interpretation and responseeffectively ensures that marginalization is perpetu-ated, since others respond to a stigmatized indivi-dual as someone already burdened with shame,ambivalence, and low status. Macro-social structur-al forces also compound marginalization by limitingin advance the possibilities of other kinds ofinteractions or responses. These approaches are alarge part of the reason that stigma is so prominentnow and insights from this work are being used toaddress stigma in people’s lives. We seek to build onthis body of work and to provide a new set of ideasthat will contribute a novel perspective to the studyof stigma.
Anthropological or ethnographic approaches tostigma also emphasize its social dimensions,although these approaches impel us to even moredeeply and robustly consider how stigma isembedded in the moral life of sufferers. Thisapproach adopts the concepts of a broader perspec-tive on the social dimensions of illness (Kleinman1988), social suffering (Kleinman, Das, & Lock1997), and violence and trauma (Das et al., 2001).Here, the focus is on lived or social experience,which refers to the felt flow of engagements in alocal world. A local world refers to a somewhatcircumscribed domain within which daily life takesplace. This could be a social network, an ethno-grapher’s village, a neighborhood, a workplacesetting, or an interest group. What defines all localworlds is the fact that something is at stake. Dailylife matters, often deeply. People have something togain or lose, such as status, money, life chances,health, good fortune, a job, or relationships. Thisfeature of daily life can be regarded as the ‘‘moralmode’’ of experience. Moral experience refers to thatregister of everyday life and practical engagementthat defines what matters most for ordinary menand women (Kleinman, 1997, 1999, 2006). Earlyrecognition of a moral component to stigma isfound in the important contributions of Goffman(1963), Scott (1969), and Erikson (1966).
Building on other theorists’ notions of stigma as asocial, interpretive, or cultural process, anthropol-ogists have pushed us to conceive of stigma as afundamentally moral issue in which stigmatizedconditions threaten what really matters for suf-ferers. In turn, responses arise out of what mattersto those observing, giving care, or stigmatizing;here, what matters to these social interlocutors can
allay or compound conditions. In addition tocompounding the experience of illness, stigma canintensify the sense that life is uncertain, dangerous,and hazardous. Stigmatizing someone is not solely aresponse to sociological determinants or a deeplyinterpretive endeavor played out in a culturalunconscious. It is also a highly pragmatic, eventactical response to perceived threats, real dangers,and fear of the unknown. This is what makes stigmaso dangerous, durable, and difficult to curb. For thestigmatized, stigma compounds suffering. For thestigmatizer, stigma seems to be an effective andnatural response, emergent not only as an act ofself-preservation or psychological defense, but alsoin the existential and moral experience that one isbeing threatened. Here the dialectics that definedthe sociological approach can be seen to bedeepened or thickened. Responses are not onlydetermined by cultural imperatives, meanings, orvalues, but refer to a real world of practicalengagements and interpersonal dangers. Both thestigmatizers and the stigmatized are engaged in asimilar process of gripping and being gripped bylife, holding onto something, preserving whatmatters, and warding off danger. If recipients ofstigma find that what is held to be most dear may beseriously menaced or even entirely lost, these threatsare also felt by non-stigmatized others and may leadthem to respond to the threat embedded in thestigmatizing situation by discriminating against andmarginalizing others.
From a cross-cultural perspective, stigma appearsto be a universal phenomenon, a shared existentialexperience (Link et al., 2004). Yet we must becareful not to collapse all forms of discriminationinto a formulaic idea of stigma. Historically,Foucault (1977) and others (Farmer, 1992; Gussow,1989; Shell, 2005) have demonstrated that stigmavaries in degree and quality in distinctive epochsowing to different administrative and legal dis-courses. Across cultures, the meanings, practices,and outcomes of stigma differ, even where we findstigmatization to be a powerful and often preferredresponse to illness, disability, and difference. Areview of the research literature in China, forexample, would lead one to conclude that stigmaexerts its negative effects in a similar way to othercommunities. First, people with psychiatric illnessare perceived, within their communities, as unpre-dictable and dangerous. In one study (Tsang, Tam,Chan, & Cheung, 2003), nearly 50% of 1007 HongKong community respondents described people
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with mental illness as ‘‘quick-tempered’’ and asignificant proportion (28.9%) agreed that thisgroup is ‘‘dangerous no matter what.’’ In anotherstudy, nearly 70% of 320 schizophrenia outpatientsin Hong Kong (Lee, Lee, Chiu, & Kleinman, 2005)agreed that promotion at work would be affectedand 59.7% anticipated their partner leaving him/herif the mental illness was revealed. This expectationof rejection in turn shaped patients’ copingresponses. Over 50% of Lee et al.’s (2005) sampledeliberately concealed mental illness from co-work-ers and friends. From such studies we learn howpeople in a variety of cultures can anticipatediscrimination, shunning, and bias when it comesto their illness experiences.
The greatly pejorative stereotypes in China alsoappear to contribute to frequent direct discrimina-tion. Over a majority (60%) of 1,491 familymembers of schizophrenia patients in MainlandChina reported experiencing ‘moderate’ or ‘severe’effects of stigma on the patient (Phillips, Pearson,Li, Xu, & Yang, 2002), and a significant percentage(44.5%) among the outpatients in Lee et al.’s (2005)study also reported being laid off after disclosingtheir mental illness. Hence, the empirical researchamong Chinese individuals with mental illnessdemonstrates types of discrimination, rejection andloss of self-worth that converge with stigmareported in European and North American popula-tions (Phelan, Bromet, & Link, 1998; Wahl, 1999).
Yet the above conclusion provides an incompleteunderstanding of how stigma effectively margin-alizes both individuals and entire social groups inChina. A more comprehensive formulation can bereached by understanding how stigma threatens themoral experience of individuals and groups, suchthat responses arise out of feelings of danger,uncertainty, and preservation. For example, whatis most at stake for the mentally ill in China is oftenthe ways that stigma can devastate the moral life ofa family (Phillips et al., 2002). Kinship ties areburdened where an individual is viewed as atemporary part of a timeless structure whosedescendents have the responsibility to extend andmake this structure prosper (Kleinman & Kleinman,1993). Stigma in Chinese society quickly movesfrom affected individuals to his/her family, largelydue to shared etiological beliefs about mental illnessthat assign a moral ‘‘defect’’ to sufferers and theirfamilies (Yang & Pearson, 2002). Family memberssuffer so much from stigmatizing attitudes that59.6% of Lee et al’s (2005) outpatient sample
reported that family members wished to concealthe illness and 41.1% reported unfair treatmenttowards family members. Stigmatizing the familythus threatens to break the vital connections(‘‘quanxi wang’’) that link the person to a socialnetwork of support, resources, and life chances.Especially threatened are the material and socialopportunities for the patient to marry, havechildren, and perpetuate the family structure.Something crucial is missed when stigma is seen asaffecting the individual only; in these examples fromChinese society, stigma is most grievously felt as itsconditions reverberate across social networks, suchthat both the entire network is threatened ordevalued and the individual sufferer is shunned,banned, or discriminated against within that net-work as a defensive response. The end result forindividuals with mental illness and their families inChina can be a kind of social death that threatensthe very existence, value, and perpetuity of thefamily group.
The concept of moral experience and its applica-tion to stigma is not limited to cross-culturalsettings. Overarching core values in the US de-marcate individuals as full participants in sociallife or de-legitimate others as not quite integrated.Since de Tocqueville (1832 (1990)) analysis ofdemocracy and American values in the early1800s, the notion of individualism—where anindividual’s freedom to exercise choice and self-reliance is obtained through sufficient educationand fortune to chart one’s life—has been classifiedas supremely ‘‘American’’. Since American societydoes not maintain hereditary wealth or classdistinctions, de Tocqueville also identified labor as‘‘ythe necessary, natural and honest condition’’and even ‘‘held by the whole community to be anhonorable necessity’’ (pp. 152–153). Such valueshave persisted to comprise present-day ‘‘official’’American values of tolerance, equality of opportu-nity, individual initiative, and freedom that havebecome embedded in US education and socializa-tion (Selznick & Steinberg, 1969). Violation of thesecore values leads to moral sanctions; such indivi-duals are cast as the moral ‘‘other’’—e.g., unem-ployed welfare recipients are characterized asundeserving persons reliant on overly generousgovernment benefits (Morone, 1997). In its mostpotent form, moral judgments can ‘‘shape thedefinition of rights, the distribution of prestige,and the dispensation of social welfare benefits’’ inthe US (Morone, 1997, p. 998).
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How such core lived values are affected in thelived experiences and moral lives of sufferersdepends not just upon the particular illness, butalso upon the concrete setting, social network, orsituation of care in which the sufferer lives. Forexample, recent first-break schizophrenia patientsin a particular locale will have different things atstake than chronic patients who at a later illnessand life stage may require family or govern-ment assistance for everyday living. An initialpsychotic break will likely emerge in adolescenceor early adulthood; illness onset greatly compro-mises one’s ability to meet developmental demandsessential to achieving self-reliance, such as complet-ing school, finding employment, and living inde-pendently. Psychiatric hospitalization mayespecially threaten the patient’s emergent sense ofindividual freedom as many basic rights andliberties may be suspended. If, as Erikson (1963)argued, the key developmental task of early adult-hood is to establish intimate bonds of love andfriendship, which may be powerfully felt as desiresfor peer acceptance and normality, then thisambient individualist culture is further contestedby the very practical setting in which people come ofage. For first-break schizophrenia patients, then,stigma arises and is felt most directly in theseessential life domains. At very early stages ofdevelopment, personal growth, and socialization,what matters most is threatened not by an intrusionbut by definition. The ambivalence of an uneven,difficult, and threatened development would be partof the socialization itself, such that stigma comes todominate the moral experience of the sufferer,threatening the process of achieving a balancebetween self-reliance and retaining a sense ofnormalcy.
The focus on moral experience also allows areconceptualization of how the so-called ‘‘others’’constitute the world of stigma. These are the onesdoing the stigmatizing, but they can also bemembers of a peer group, social network, or systemof care (e.g., parents, doctors). The anthropologicalapproach sees all of these people as inhabitingshared social space. Not just positioned differentlywithin structures of stigma, status, and prestige,they are bound together in getting things done, inthe practice of addressing illness and stigma. Whatmatters most to all these ‘‘others’’ interlaces withwhat matters to sufferers.
The anthropological focus on moral experiencefurther contributes to the study of stigma by
framing this process as a sociosomatic one. Theembodiment of sociosomatic processes is especi-ally well-exemplified in the Chinese experienceof face and its loss. Face represents one’s moralstatus in the local community. One ‘‘has’’ face,‘‘receives’’ face, and ‘‘gives’’ face to respectedothers. When Chinese experience loss of face,they quite literally report the experience of humilia-tion as an inability to face others, as a physicalcrumbling of facial expression, a way of beingfaceless. Here, stigma is not just a discursive orinterpretive process but a fully embodied, phy-sical, and affective process that takes place in theposture, positioning, and sociality of the sufferer.This linking of values to physical experiencesis termed moral-somatic. Among Chinese, thisphysical sensation is inseparable from the emo-tion of humiliation, and that emotion in turn isdirectly tied to the social state and the moral valueof being discredited (or discreditable). The linkingof values to emotional states can be described asmoral-emotional. The face complex is locatedsimultaneously among physical–emotional–social–cultural domains, or a ‘‘sociosomatic reticulum’’(Kleinman, 1996; Kleinman & Kleinman, 1991).Stigma is such a closely related example that itmay work through the same interconnection ofphysical–emotional–sociocultural bodies, at leastamong Chinese.
Writings about stigma in the European andNorth American traditions of social thoughthave not adequately attended to its moral dimen-sions. Yet, we can today read Goffman as havinghad very much in mind moral status and itsvicissitudes. We recommend that moral experiencebe brought back into definitions and models ofstigma as a reticulum spanning the person (body-self-affect), the sufferer’s social network and condi-tions, and what is most at stake for sufferers and fortheir local world. Stigma, we hypothesize, threatens
the loss or diminution of what is most at stake, or
actually diminishes or destroys that lived value. Putdifferently, engagements and responses over whatmatters most to participants in a local social worldshape the lived experience of stigma for bothsufferers and responders or observers. The focuson moral experience allows us to adequatelyunderstand the behaviors of both the stigmatizedand those doing the stigmatizing, for it allows us tosee both as interpreting, living, and reacting withregard to what is vitally at stake and what is mostcrucially threatened.
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Implications of previous stigma theory on
measurement
Stigma theories exert a direct influence onmeasurement by determining the content of stigmaassessments and thereby identifying what lies withinthe stigma construct. Further, each stigma modelcalls for the administration of measures to specificpopulations (e.g., Corrigan and Watson’s (2002)theory of personal response to stigma requiressampling people with mental illness) to test itstheory. In our view, the individualistic focus amongprior stigma models has contributed to a predomi-nance of survey research conducted among certaingroups. Our view is corroborated by an extensivemethodological review of 109 stigma studies con-ducted from 1995–2003 (Link et al., 2004), whichillustrates an emphasis on survey methodology(fixed questions followed by Likert response scales);60% of studies utilized survey methods, constitutingthe most frequently used methodology. Surveyinstruments with fixed-item responses are especiallysuited to assessing stigma dimensions located withinthe individual (see Link et al., 2004, p. 517, Table 3).In terms of study populations, because existingstigma theories highlight the effect of communityattitudes towards the individual, this has resulted inthe most frequent sampling of general populationgroups (47% of studies; see also Link et al., 2004,p. 518, Table 4). To a lesser degree, studies thatexamine theories of how individuals experience andrespond to stigma have also resulted in a significantproportion of studies that sample people withmental illness, constituting the second-mostsampled group (22% of studies). These methodolo-gical and sampling biases have resulted in aninordinate focus on individual actors as the solesource and recipient of stigma.
In contrast, several of the sociological modelssuggest a more social, or less individualistic, viewof the stigma process by emphasizing societalforces and larger-scale units of measurement. Forexample, Corrigan et al.’s (2004) formulation ofstructural discrimination emphasizes measure-ment of collective and macro-level units (e.g., howgovernment insurance systems may limit mentalhealth benefits) as the aggregate of individualunits. This structural view focuses on larger-scalesystems and promotes more complex assessment ofstigma variables that captures both macro- (e.g.,structural discrimination) and micro (e.g., loss ofjob opportunities)-level sources of stigma. From
this perspective, increased side effects from con-ventional antipsychotic medications that are pre-scribed due to cost-saving guidelines, adverseexperiences during psychiatric hospitalization thatprivilege social control over patients, and dispro-portionate allocation of funds towards staff salaryas opposed to medical supplies (including medica-tions) in Hong Kong constitute valuable areas forstigma measurement (Lee, Chiu, Tsang, Chiu, &Kleinman, 2006).
Although current stigma research appears toacknowledge the psychosomatic quality of stigma,little research has actually examined this topic. Thesame can be said of the interpersonal aspects ofstigma. They are often included in studies but all tooinfrequently are prioritized. Hence, with a fewinteresting exceptions, most current research islimited by its methodological emphasis on indivi-dual psychological processes as well as collectivebiases.
Contributions of ‘‘moral experience’’ to stigma
measurement
Several useful questions for research emerge fromconsidering moral experience in relation to stigmaprocesses:
Stigma spans physical– emotional– social– cultural
domains
By threatening what is at stake in the socialworld, stigma endangers what is most valued inone’s innermost being. By proposing a means bywhich the social world (values) crosses over into theself (subjective experience of bodily states andemotions), our framework incorporates how stigmahas psychobiological manifestations that occur outof awareness and that stigma takes place inintersubjective space. We propose that stigma hasthe following characteristics:
Stigma is sociosomatic
Norms and emotions are linked by mediatingprocesses, which occur simultaneously throughmoral-somatic and moral-emotional forms. In mor-al-somatic processes, one’s bodily states are linkedwith one’s experience of societal norms andvalues—i.e., the experience of the social worldmay be transduced to physiology. This process isillustrated by neurasthenia patients in China whoembodied the tremendous social upheaval of the
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Cultural Revolution as dizziness, headaches, fatigueand exhaustion (Kleinman, 1988). With stigma,distinct physical experiences may occur with loss ofsocial position. For example, Chinese report dis-crete physical sensations (e.g., crumbling of facialexpression), representing real dread that is experi-enced even more strongly than physical fear (Hu,1944).
With moral-emotional processes, social values areconcurrently linked with an individual’s experienceof emotions. Symbolic forms of stigma, such aslanguage and cultural images, connect the socialworld of values to the inner world of feelings.Chinese social life exemplifies this process, wheresocial connections are intertwined with affectivedynamics in everyday interaction (renqing guanxi—
the feeling of moral relationships). In this context,the loss of social standing and weakening of socialties resulting from stigma become inseparable fromfeelings of overwhelming shame, humiliation anddespair.
While prior stigma theories have identified howsocietal valuations of mental illness are linked withthe labeled individual’s emotions (e.g., Link et al,1989), our theory also emphasizes that stigma ismoral-somatic. Although other stigma theoriesimply that physical processes within the stigma-tized individual occur through affect or involuntarystress responses (e.g., Major & O’Brien, 2005),our theory also identifies that stigma may be feltand sensed in the individual’s bodily state yet notconsciously acknowledged. This process is de-picted by people with mild mental retardationwho preserve self-esteem and a sense of normalityby adamantly rejecting the label of mental retarda-tion and its implied lack of basic competence(Edgerton, 1993). Edgerton describes these elabo-rate attempts to ‘‘pass’’ as normal and denial of everbeing labeled mentally retarded as assuming aprotective ‘‘cloak of competence’’. Yet despite thisapparently successful use of denial, such peoplecontinue to fundamentally sense or feel theirdifference and intellectual deficits. How societalnorms of devaluation come to be physically felt,even if consciously disavowed, may also occuramong people with mental illness who find theconsequent shame too horrible and intolerable toacknowledge.
Stigma is intersubjective
Stigma occurs among interpersonal communica-tion and lived engagements. By taking place both
outside and inside a person, stigma is a social andsubjective process. Thus, stigma can be viewed asinterpersonal, or relational in nature. We furthersuggest that much of stigma occurs in the inter-subjective space between people at the level ofwords, gestures, meanings, feelings, etc., duringengagement with what matters most. To utilize theChinese example, when severe mental illness occurs,shame engulfs each family member as well as thepatient. Collectively, they may be ostracized fromsocial networks and experience reduced socialstatus. Yet can the experience of shame beaccurately understood as residing in each afflictedfamily member? Or can it also be understood asbeing located in the intersubjective space—in theinterpersonal actions and communications thatsignal recognition of shame—between patients andtheir closest family members?
We thus recommend a shift from solely assessingstigma within the individual towards gauginginterpersonal, or transactional, forms of stigma.Such a shift becomes essential if, as described above,intolerable shame may be disavowed by individualswhen directly queried. Indeed, prior stigma researchhas utilized transactional analyses, such as evaluat-ing behavioral interactions between a ‘‘perceiver’’and (falsely and unknowingly labeled) ‘‘psychother-apy client’’ (Sibicky & Dovidio, 1986). We are not,however, encouraging research approaches that usedeception. We suggest returning to such observa-tional, or transactional, methodologies to morefully capture stigma’s interpersonal aspects. Thisapproach may aid examination of how structuraldiscrimination works, as this type of stigma oftenconsists of everyday, subtle forms of social interac-tions.
Stigma threatens what matters most
Stigma takes on its character of danger bythreatening interpersonal engagements and what ismost at stake. This perspective directly contributesto stigma measurement because what is most atstake for participants in a local world is empiricallydiscoverable. How stigma threatens moral standingcan be ascertained by eliciting the actual words usedby informants to describe their stigma experiences.Further, one may inquire how those words relate toinformants’ reports of what is most at stake andhow stigma affects these lived values in everyday lifeactivities.
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Anthropology and moral theory contribute to theexamination of stigma by articulating (e.g., throughhighly focused ethnography) where critical stigmaprocesses exert their harmful effects. In particularcontexts, stigma processes may occur during keytimes that inculcate patients (and family members)into stigmatized ‘‘careers’’. These ‘‘critical periods’’are likely to be interconnected among practical,everyday engagements with commonly held formsof status or power in local worlds, which mayconsist of other than economic or political types.For example, one study in Hong Kong reported thatfamily members in addition to sharing the shame ofmentally ill individuals, also may perpetuate stigmatowards the patient (Lee et al., 2005). Lee et al.hypothesized that family members’ fears of socialcontamination and losing face—a social statusneeded for interpersonal action—motivated rela-tives to stigmatize (and sometimes abandon) their illfamily members. For a newly labeled Chineseindividual, potentially traumatizing interactionswith closely bonded family members may ‘‘initiate’’patients into a stigmatized role. Further, actionsfrom health care professionals that convey adevalued status to patients are increasingly recog-nized as pivotal in stigma generation, particularlyduring initial psychiatric hospitalization (Lee et al.,2006).
Upon identifying the stigma processes thatthreaten what makes life matter, these areas canthen be targeted for anti-stigma intervention andevaluation of such programs. This perspectivemarkedly contrasts with most anti-stigma inter-ventions to date, which have sought to modifypublic opinions through psychoeducation and haveexamined public attitude change as the primaryoutcome (Hinshaw & Cichetti, 2000). Althoughstigma may share features across contexts, what ismost at stake in local settings constitutes thereceptive field that shapes how stigma is felt. Ratherthan prescribing interventions without knowledgeof their local effects, focused interventions based onobservation of the everyday lives and the actualdifficulties that stigmatized individuals face maybetter address how stigma threatens what isfundamentally at stake. Accordingly, the WorldPsychiatric Association has recently shifted itsefforts to reduce stigma in over 20 countries fromstaging public attitude campaigns that had smalland transient effects to tailoring interventions to thelocal stigma experiences of psychiatric patients(Sartorius & Schulze, 2005).
Measuring stigma requires multiple perspectives and
measures
To fully describe how stigma affects what is mostvalued for local stakeholders, it becomes essential toobtain perspectives from multiple participants whocomprise that social space. Multiple informantsbecome necessary because stigmatized individualsmay possess inadequate awareness of how commu-nity members view their condition. Second, stigma-tized individuals may not disclose concernsregarding stigma because it may be felt as toothreatening. Although not immune to such influ-ences, close family members may be more attunedto and willing to report stigma experiences. How-ever, the stigmatized individual’s (and familymember’s) perspective remains essential becausecommunity members may also withhold stigmatiz-ing attitudes due to concerns of ‘‘correctness’’ orsocial desirability. In terms of moral experiencetheory, these ‘‘other’’ social actors are also vitallyintertwined with the practical everyday engage-ments over what matters most to sufferers.
The use of multiple vantage points and meth-odologies may reveal different or complementaryperspectives on how stigma threatens to diminishwhat is held as most dear by local participants.Ethnographic methods (e.g., participant observa-tion) are especially suitable because: (1) manystigma-related topics may initially be avoided andmay only emerge with prolonged ethnographiccontact; (2) ethnographers may observe whatconflicts with what is explicitly stated by informantsand; (3) other key informants’ perspectives (e.g.,family) are considered essential. However, investi-gators may utilize an array of methodologies tosupplement ethnography. For example, how doindividuals’ reports of what matters most duringstigma experiences compare with focus groupreports, ethnographic interviews with communitymembers, survey data, and the use of vignettesdepicting stigmatized conditions with local groups?One such strategy would be to use quotes on stigmaderived from patient interviews as a stimulus toelicit community members’ reactions. The commu-nity members’ responses may then confirm, dis-confirm, or elaborate upon how stigma is seen todiminish what is most valued to patients in a localworld. Eliciting perspectives from stakeholders indiffering social positions regarding how stigmathreatens the labeled individual’s moral standingmay be especially suited to investigate how multiple
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devalued statuses (e.g., being poor or an ethnicminority) interact to exclude individuals from alocal world’s meaningful everyday activities. Andthe same sort of research may make the evaluationof stigma intervention programs more relevant tothe local realities people negotiate.
Conclusion
Consideration of the practical engagements ofpreserving what matters most can greatly enlivenour understanding of how stigma pervades the lifeworlds of the stigmatized. From the vantage ofmoral experience, both the stigmatized and stigma-tizers are seen as grappling with what makes sociallife and social worlds uncertain, dangerous, andterribly real. We hope that future use of this conceptand its methodological applications to examinestigma will further illuminate how stigma isfundamentally tied to moral and existential experi-ence, and how efforts to value or prevent stigmamay be enhanced by including this universallyhuman, if culturally inflected, condition.
Acknowledgements
Preparation of this manuscript was supported inpart by NIMH grant K01 MH 73034-01 which hasbeen awarded to the first author. The authors wouldlike to thank Kim Hopper and Janice Jenkins fortheir insights and critiques of this manuscript.Further, the authors would like to thank PeterBenson for contributing insights to the framing ofmoral experience.
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