Sot. Sri. & Mrd. Vol. 15B. pp. 5 to 9 0 Pergamon Press Ltd 1981. Printed in Great Britain

STIGMATIZED HEALTH CONDITIONS

JOAN ABLON

Medical Anthropology Program, Departments of Epidemiology and International Health and Psychiatry, University of California, San Francisco

Abstract-Anthropologists only recently have turned their attention to stigmatized populations in American society. The papers in this collection address varied issues of stigma and health: life career experiences of those with varied stigmatized illnesses; issues of identity, perception, and cognition related to specific health conditions; modes of coping with stigma-personal and group adaptive strategies, and positive functions of such adaptive strategies. The studies draw from a diverse range of field populations: diabetics, the deaf elderly, dwarfs, and severely scarred former burn patients. These papers originally were presented in a symposium entitled The Anthropology of Stigma organized and chaired by Joan Ablon at the annual meeting of the American Anthropological Association, Los Angeles, November 14-18. 1978.

Anthropologists have come late to studies of stigma, marginality, and deviance in American society. Typi- cally, we have turned our research gaze to the non- western, to the esoteric, and to the normative and the ideal in behavior. The non-typical, the deviant, and the disdained were characteristically ignored, treated in footnotes, or considered within a quasi-religious mystique of the impure or tainted, a symbolic cate- gorization, rather than universal phenomena inte- grated into other aspects of life. Anthropologists today have come to view the familiar and the mun- dane of contemporary society as worthy and even urgent topics for research. After focusing on esoteric and exotic ailments and health conditions around the world, we now are turning to the belief systems and behaviors surrounding such common health related states as diabetes or deafness in our own society. The emerging profile from contemporary studies in health research reflects a richness of belief-fears, myths, images-and ritualistic behaviors equivalent to that which has been documented cross-culturally.

Anthropologists who are now studying issues in contemporary health fields often find themselves within the more traditional bailiwicks of sociologists who, in keeping with studies of other social phenom- ena in the United States, got there first. Some sociolo- gists have written painstakingly on the social role and behavior of the stigmatized. Others have also ante- dated us in characterizing and dissecting “the sick role” which has served as a rich heuristic device for structural musings. Sociologists have tended to sketch normative patterning of behavior as effected by insti- tutional and often unqualified and undefined societal, presumably middle class, social expectations and values. Rarely have specific cultural, social or per- sonal variations been accounted for. Anthropological studies of specific populations and cultural groups may provide rich arenas for testing propositions and suggesting culturally varying answers to provocative questions posed in this literature.

Goffman in his classic work Stigma [l] provided a seminal prototypic study-a rich blueprint for the definition of vital dimensions and issues to be con-

sidered when addressing stigma as a social and cul- tural phenomenon.

Society establishes the means of categorizing persons and the complement of attributes felt to be ordinary and natural for members of each of these categories. Social settings establish the categories of persons likely to be encountered there. The routines of social intercourse in established settings allow us to deal with anticipated others without special attention or thought. When a stranger comes into our presence, then, first appearances are likely to enable us to anticipate his category and attributes, his “social identity”--to use a term that is better than “social status” because personal attributes such as “honesty” are involved, as well as structural ones, like “occupation”.

We lean on these anticipations that we have, transform- ing them into normative expectations, into righteously presented demands.

While the stranger is present before us, evidence can arise of his possessing an attribute that makes him different from others in the category of persons available for him to be, and of a less desirable kind-in the extreme, a person who is quite thoroughly bad, or dangerous, or weak. He is thus reduced in our minds from a whole and usual person to a tainted, discounted one. Such an attribute is a stigma, especially when its discrediting effect is very extensive; sometimes it is also called a failing, a shortcoming, a handicap [Z].

This differentness, when negatively valued, is per- ceived as deviance. The fact that deviance is an arti- fact, a creation and product of society has been pointed up by sociologists. Lemert [3] and Becker [4] have emphasized the significance of the social labeling of behavior. Says Becker:

Social groups create deviance by making the rules whose infraction constitutes deviance, and by applying those rules to particular people and labeling them as outsiders. From this point of view, deviance is not a quality of the act the person commits, but rather a consequence of the appli- cation by others of the rules and sanctions to an “offender”. The deviant is one to whom the label has suc- cessfully been applied; deviant behavior is behavior that prople so label [S].

The rituals of interaction which often obtain between “normals” and the stigmatized have been

6 JOAN ABLON

painstakingly explored by sociologists with particu- lar interests in the physically different or handicapped [6&S]. In explicating the stylized reciprocal behaviors which take place between “normals” and the stigma- tized, they have provided a systematic conceptual sys- tem of interpersonal interaction that has sent forth scholars in a number of directions to pursue research related to stigma and deviance in the health fields.

ILLNESS AS DEVIANCE

The condition of ill health as a deviant state-“the sick role”-has been given significant attention by leading American sociologists. Talcott Parsons [9] provided what has become the prototypic model for consideration of “the sick role”. The Parsonian model defined the sick role as a socially deviant status in relation to institutionalized social expectations, senti- ments and sanctions. Parsons defined four aspects of the institutionalized expectation system relative to the sick role: (I) the sick person is exempt from normal role responsibilities, relative to the nature and severity of the illness. (2) The sick person cannot be expected to get well purely by an act of will. His illness is not his fault. (3) The state of being ill is in itself undesir- able and carries an obligation to get well. (4) There is the further obligation to seek technically competent help, usually a physician, and to cooperate in the pro- cess of trying to get well.

As an ideal type the Parsonian model has been widely applied, analyzed and criticized. Problems of validity and fit of the model for use in differing cul- tural groups and for dealing with the spectrum of diverse physical and mental ailments have emerged from a great variety of studies reported in the litera- ture [IO]. The model has the best fit for temporary and acute, easily distinguished physical episodes of illness in “middle-class” American society. For other health problems in our society such as mental dis- orders and chronic conditions and for its general use among varied subcultural groups the model is less applicable.

Freidson [I l] provides a critique of Parsons par- ticularly fruitful for the anthropologist. He sees the Parson’s construct as culture-bound. He further poses hard questions dealing with the etiology of attri- butions of deviance and the definitions of terms which are taken for granted by Parsons. For example, Freid- son points up knotty problems inherent in trying to measure or define such pivotal concepts as responsi- hi&y and legitimacy as Parsons uses them. Some ill- nesses are more biophysically discrete or identifiable, thus more obviously absolving the bearer from obli- gations or fault, because they are objectively visable, provable, and thus more easily sanctioned than are others with a more significant social component.

How does a health state become deviant? Freidson notes that in the case of certain illnesses, such as venereal diseases, there is a moralistic judgement of blame made and the bearer may be held responsible for the illness. Likewise he states that medical person- nel have been noted to withhold respect and care from certain patients whose problems obviously resulted from drunkenness, carelessness, or those who had attempted suicide. Such medical problems may

be stigmatized to the extent that by social taxonomy, the illness becomes a crime in the eyes of the society.

Freidson gives much attention to the legitimacy of illness. He notes that if stigma is attached to the attri- bute, following Goffman [12], stigma spoils normal identity permanently.

What is analytically peculiar about the assignment of stigma is the fact that while a stigmatized person need not be held responsble for what is imputed to him, nonetheless, somewhat like those to whom responsibility is imputed, he is denied the ordinary privileges of social life. As the term itself implies, the societal reaction, although ambiguously. attributes moral deficiency to the stigmatized. Further- more, unlike other imputed qualities, stigma is by defini- tion ineradicable and irreversible: it is so closely connected with identity that even after the cause of the imputation of stigma has been removed and the societal reaction has been ostensibly redirected, identity is formed by the fact of having been in a stigmatized role: the cured mental patient is not just another person, but an ex-mental patient; the rehabilitated criminal gone straight is an ex-convict. One’s identity is permanently spoiled.

A stigma furthermore, interferes with normal interac- tion, for while people need not hold the deviant responsible for his stigma, they are nonetheless embarrassed, upset, or even revolted by it. The “good” stigmatized deviant is therefore expected to take special pains to organize his behavior and his life in such a way as to save others from embarrassment. For “normal” illness, many normal obliga- tions are suspended; only the obligation to seek help is incurred. But in the case of the stigmatized, a complex variety of new obligations is incurred. Whereas in the former instance the burden of adjustment (through permis- siveness and support) lies on the “normals” around the sick person, the burden in the latter lies on the stigmatized person when he is around “normals”. [13].

Freidson provides a classification of types of Iegiti- macy adhering to illness states. Within these cate- gories he identifies six analytically distinct varieties of deviance which while each being called “illness”, car- ries differing consequences for the individual and his social system.

The area of Freidson’s analysis which reflects a prime traditional divergence in focus between the sociologist and the anthropologist is in the concept of illness careers. Freidson argues that constructing the career of the deviant on the basis of the medical specialists, agents and agencies that he moves through is more useful analytically than examining the changes in the deviance imputed to him or of his own changes in self. Anthropologists frequently have chosen a more personal approach, studying individ- uals and groups as culture bearers and behavior crea- tors, rather than focusing on the institutional contex- tual structures with which individuals and groups must deal. In fact, Foster [14] states that a basic dif- ference between the research of medical anthropolo- gists and medical sociologists is that medical anthro- pologists have tended to study the patient, often as underdog, as he proceeds through the mazes of the bureaucratic medical systems, while medical sociolo- gists have focused on these systems and the associated personnel. Indeed it is in this very aspect of tra- ditional foci that medical anthropologists are reflec- ting change, now choosing from the multitude of varied options open to them for research in health care systems and in health related problems in the

Stigmatized health conditions 7

community. Patients, illnesses, systems and personnel are all appropriate subjects for inquiry.

IMAGES

In the study of diseases which are treated with a special fear, dread, or repulsion, the anthropologist finds a field rich for the investigation of the totality of values and behaviors common to our contemporary

society. Disease has been thus used as an analytic prism for cultural understanding by social critics. For example, Sontag [lS] has produced a historical and literary analysis of the meanings adhering to tubercu- losis and cancer in the Western world. She vividly compares and contrasts the images, myths, and quali- ties attributed to these diseases and the individuals bearing them.

all been attributed to those with consumption and other illnesses. In some periods a disease was a reflec- tion of a good or bad character, a product of a strong or weak will, or a punishment for moral behavior. Sontag argues that diseases are reflective of attitudes toward the society of the time.

Any important disease whose causality is murky, and for which treatment is ineffectual, tends to be awash in signifi- cance. First, the subjects of deepest dread (corruption, decay, pollution, anomie, weakness) are identified with the disease. The disease itself becomes a metaphor. Then, in the name of the disease (that is, using it as a metaphor), that horror is imposed on other things. The disease becomes adjectival. Something is said to be disease-like, meaning that it is disgusting or ugly [16].

Master illnesses like TB and cancer are more specifically polemical. They are used to propose new. critical standards of individual health. and to express a sense of dissatisfac- tion with society as such. Unlike the Elizabethan meta- phors-which complain of some general aberration or public calamity that is. in consequence, dislocating to indi- viduals--the modern metaphors suggest a profound dis- equilibrium between individual and society, with society conceived as the individual’s adversary. Disease metaphors are used to judge society not as out of balance but as repressive. They turn up regularly in romantic rhetoric which opposes heart to head, spontaneity to reason, nature to artifice. country to city [ZO].

ISSUES

As we approach the study of stigmatized health conditions there are a variety of dimensions yet to be well explored:

The consequences of stigma are explained:

Any disease that is treated as a mystery and acutely enough feared will be felt to be morally. if not literally, contagious. Thus, a surprisingly large number of people with cancer find themselves being shunned by relatives and friends and are the object of practices of decontamination by members of their household, as if cancer, like TB. were an infectious disease. Contact with someone afflicted with a disease regarded as a mysterious malevolency inevitably feels like a trespass; worse, like the violation of a taboo. The very names of such diseases are felt to have a magic power [ 171.

Since getting cancer can be a scandal that jeopardizes one’s love life, one’s chance of promotion, even one’s job, patients who know what they have tend to be extremely prudish, if not outright secretive, about their disease. And a federal law, the 1966 Freedom of Information Act, cites “treatment for cancer” in a clause exempting from disclo- sure matters whose disclosure “would be an unwarranted invasion of personal privacy”. It is the only disease men- tioned [18].

(I) The nature of the illness. Why is a stigmatized condition so labeled? What is its history; its attri- buted characteristics? Leprosy, of Biblical fame is as- sociated with hideous disfigurement. Venereal dis- eases are often associated with clandestine or immoral sexual activities. Diabetes, a sometimes crippling dis- ease, more often inhibits the social, physical and sex- ual activities of its bearers, and fear of its inheritance may inhibit marriage. Cancer carries the mystique of death. It is as Sontag notes “The disease that doesn’t knock before it enters.. . a ruthless, secret invasion”. The cosmetic prescriptions of our society have created negative social stimulus values for the physically maimed or disabled or those simply different: those “too” short, “too” tall, “too” fat. How do the percep- tions of these characteristics relate to the larger cul- tural context?

Sontag graphically through generous references to literature describes the social images associated with those individuals afflicted with TB and cancer.

Many of the literary and erotic attitudes known as “romantic agony” derive from tuberculosis and its trans- formations through metaphor. Agony became romantic in a stylized account of the disease’s preliminary symtoms (for example, debility is transformed into languor) and the actual agony was simply suppressed. Wan. hollow-chested young women and pallid, rachitic young men vied with each other as candidates for this mostly (at that time) incurable, disabling, really awful disease. Gradually, the tubercular look. which symbolized an appealing vulnerabi- lity, a superior sensitivity. became more and more the ideal look for women-while great men of the mid- and late nineteenth century grew fat, founded industrial empires, wrote hundreds of novels, made wars, and plundered conti- nents [ 191.

(2) The nature of the populations who are perceived to carry the illness, Health statistics highlight the fact that poorer populations, often non-white ethnic groups, experience also poorer health than other seg- ments of society. Disenfranchised from many benefits and services of society by their poverty and ethnic identities, persons of these populations from their first help-seeking experience, enter the medical system as stigmatized patients. They may exhibit diverse cul- tural beliefs and linguistic and “compliance” patterns which early on serve to alienate them from care pro- viders.

(3) The kinds of treatments and practitioners sought may be stigmatized. Alternative ethnic or cul- turally identified types of therapists such as faith healers, curanderos, acupuncturists, laetrile therapists, naturopaths, or rolfers may be held in disrepute by the larger society or defined as illegal in their practice of healing modalities. Thus, the patient pursues treat- ment warily, cognizant that the western or metropoli- tan system regards his seeking as superstitious, use- less, fraudulent, or illegal.

Stereotypes about character, proclivity for sexual (4) How do persons with stigmatized health con- and emotional passion, personality, and morals have ditions cope with the daily insults which endanger

8 JOAN ABLON

their personal identity, their social life, and their econ- omic opportunities? What individual and social pat- terns have emerged to insure psychic and social sur- vival for the stigmatized?

Sociologists often have constructed normative reali- ties, described processes of impersonal-persons as they interact with one another in chance or stylized social encounters. The incisive interactional analyses presented have explicated consciously and uncon- sciously-motivated phenomena of pretense in the seemingly common-place of rituals of social interac- tion. Anthropologists are able to contribute empirical richness from their studies of diverse populations and specific cultural and social systems. adding affect and variance to normative descriptions.

Typically medical anthropologists have broached the subjects of deviance and stigma only when dealing with mental illness. Edgerton has presented an un- usual cross-cultural exploration of varied forms of deviant behavior including mental illness as one such form of behavior [21]. Edgerton focused on the nego- tiation process in the “recognition” of mental illness in an African study 1221. In The Cloak of Competence [23], he explores the dimensions of stigma in the lives of mentally retarded adults in Southern California, portraying through life histories the coping processes of his informants.

In another rare instance of an anthropological treatment of a stigmatized patient population, Gus- sow and Tracy [24] illustrate how the anthropologi- cal approach may contribute to the conceptual base developed by sociologists. The authors note that Goffman doomed the deviants of his hypothetical population to eternal stigmatization in their own eyes as well as those of society by his premise that the stigmatized apparently accept the very norms that disqualify them. There is no description of destigmati- zation, disavowal of deviance, or modes of productive coping with stigma, or of positive adaptations to it in his discussions. Gussow and Tracy describe a produc- tive effort by patients to cope with leprosy-perhaps the most stigmatized illness known :

Surely there are other feasible modes of adaptation. One is the development of stigma theories by the stigmatized- that is, ideologies to encounter the ones that discredit them, theories that would explain or legitimize their social condition, that would attempt to disavow their imputed inferiority and danger and expose the real and alleged fal- lacies involved in the dominant perspective.

Perhaps the reason Goffman gives so little attention to this line of thought is because he deals mainly with single individuals in brief encounters with normals, usually in “unfocused gatherings”. He seems less concerned with patients’ efforts toward destigmatization in more perma- nent groupings, especially in social settings where they live together in more or less continuous interaction, where they are able to develop their own subculture, norms, and ideo- logy, and where they possess some measure of control over penetrating dissonant and discrediting views from without.

It is precisely there circumstances under which a group of “stigmatized” evolve their own stigma theory that inter- est us here. We are concerned with the meaning of this more or less consciously constructed perspective to their lives and its function in facilitating a linkage with the wider society. To this end, we conceptualize the career patient status as a mode of adaptation to chronic stigmatizing conditions and elucidate its ideological base in a stigma theory.

The argument is developed in terms of problems faced and strategies employed by leprosy patients at the USPHS Hospital, Carville, Louisiana, in their efforts to delineate a viable social and psychological explanation for the wide- spread prejudices toward leprosy patients. The ideology and strategy presented below serve to provide patients with a means of attenuating self-stigma and altering other stigma [25].

These authors present excellent case examples of what anthropological research can contribute to a so far rich but culturally-limited conceptual literature deal- ing with stigma.

The papers in this collection were originally presented in a symposium entitled The Anthropology of Stigma at the annual meeting of the American An- thropological Association in Los Angeles, 1978. The papers address many issues of stigma and health: life career experiences of those with varied stigmatized illnesses; issues of identity, perception, and cognition related to specific conditions; modes of coping with stigma-personal and group adaptive strategies; and positive functions of such adaptive strategies. The studies draw from a diverse range of field popula- tions: diabetics, dwarfs, severely scarred former burn patients, and the deaf elderly. The authors regard this collection as an opportunity for the delineation and consideration of significant issues and concepts in a provocative new arena for anthropological research.

I.

2. 3.

4.

5. 6. 7.

8.

9.

IO.

11.

12. 13. 14.

15.

16. 17. 18. 19. 20. 21.

22.

REFERE.NCES

Goffman E. Stigma. Prentice-Hall, Englewood Cliffs, NJ, 1963. Ibid., pp. 2-3. Lemert E. M. Social Pathology. McGraw-Hill, New York, 1951. Becker H. S. Oursiders: Studies in the Sociology of Deviance. The Free Press, New York, 1963. Ibid., p. 9. Goffman E. op. cit. Davis F. Deviance disavowal: the management of strained interaction by the visably handicapped. Sot. Prohl. 9, 120, 1961-62. Glaser B. G. and Strauss A. L. Awareness, contexts and social interaction. Am. social. Rev. 29, 669, 1964. Parsons T. The Social System. The Free Press of Glen- toe, New York, 1951. Segall A. The sick role concept: understanding illness behavior. J. Hlth Sot. Behati. 17, 163, 1976. Freidson E. Profession of Medicine: A Study of the Sociology of Applied Knowledge. Dodd, Mead. New York, 1979. Goffman E. op. cit. Freidson E. op. cit. pp. 235-236. Foster G. M. Medical anthropology: some contrasts with medical sociology. Medical Anthrop. Newsleft. 6, 1974. Sontag S. Illness as Metaphor. Farrar, Straus & Gir- oux, New York, 1977. Ibid., p. 58. Ibid.. p. 6. Ibid., p. 8. lhid., pp. 29-30. Ihid., pp. 72-73. Edgerton R. Devimce: A Cross-Cultural Perspective. Cummings, Menlo Park, 1976. Edgerton R. On the “recognition” of mental illness. In Chtrnging Perspectices in Menrul Illness (Edited by

Stigmatized health conditions 9

Plog S. and Edgerton, R.) pp. 49-72. Holt, Rinehart & 24. Gussow Z. and Tracy G. S. Status, ideology, and adap- Winston, New York, 1969. tation to stigmatized illness: a study of leprosy. Hum.

23. Edgerton R. The Cloak of Competence. Univ. Califor- Org. 27, 316, 1968. nia Press, Berkeley, 1967. 25. Ibid., p. 317.