22

Learning to Be a Leper: A Case Study in the Social

This selection returns us to the anthropological enterprise of observation and interviewing. The phenomenon of the social
cross-cultural comparison by examining the social meanings construction of a stigmatized illness cannot be studied only
of a particular illness—leprosy—in the contexts of South by talking to people who have the disease. The social reaction
Asia, North America, and Africa. The biomedical label for to the disease—the social construction of a moral judgment
leprosy is Hansen’s disease (HD); contrary to myth, this dis- about the condition—is equally important.
ease, characterized by a progressive degeneration of nerves As you read this selection, consider these questions:
in the limbs, is not highly infectious. The deformities associ-
ated with leprosy are the result of untreated secondary infec- n What does the author mean by the “social con-
tions, partly because the victim has no sensation of pain in struction of illness” in this article’s title?
the extremities. With modern biomedical care, HD can be n How is the social stigma of leprosy different
completely arrested. Although it may be possible to cure the from the stigma of AIDS?
disease, the illness and its social stigma are less easily treated.
n If you were a physician and were able to stop
Leprosy is a particularly interesting topic for cross-
a case of HD so that there were no deformities
cultural comparison, because the disease has undergone
or long-term effects, what do you think could
a striking social transformation. Even though biomedi-
be done about the experience of the illness of
cal science has disproved the idea of leprosy as being
leprosy?
“unclean,” this notion persists. Westerners fear and are
disgusted by leprosy; it is, after all, a disease of biblical n How is it that agencies designed to help people
proportions. But is this social stigma a cultural universal? might in fact contribute to their stigmatization?
Is the social reaction related to particular pathological fea- n What does the author mean when she says that
tures of the disease? What is it like to be a leper? people have “careers” with a chronic disease?
When people are diagnosed with a chronic disease, they
must learn to adapt to it. The mechanisms for coping, how-
ever, are learned in a cultural context. People in the United Context: Nancy Waxler was a medical sociol-
States with leprosy react differently than do people with ogy professor in the Department of Psychiatry at
HD in Ethiopia. In this selection, Nancy Waxler argues Harvard Medical School and later in the School of
that the Mycobacterium pathogen that causes leprosy the Social Work at the University of British Columbia
disease plays only a small part in the large drama that is (she died in 2007). She did extensive fieldwork
leprosy the illness. Also note her description of how chari- on health care delivery in India, Sri Lanka, and
table institutions, established to serve those suffering from Malaysia and coedited a book on cross-cultural
leprosy, in the long term may function to perpetuate the caring. This article is notable for at least two impor-
problems of stigmatization. tant contributions to the study of health-related
In this selection the medical anthropologist is describing stigma. The first is that no disease, even leprosy,
the experience of illness from the patient’s perspective. This is automatically stigmatized—stigma arises from
approach is an example of experience-near ethnographies that a variety of social, cultural, and historical factors.
are based on the qualitative research techniques of participant

Understanding and Applying Medical Anthropology: Biosocial and Cultural Approaches (3rd ed.) by Peter J. Brown and Svea Closser, 230–40 © 2016
Taylor & Francis. All rights reserved. Chapter 22 original article source: Adapted from N. E. Waxler. 1981. Learning to Be a Leper: A Case
Study in the Social Construction of Illness. In E. G. Mishler (Ed.), Social Contexts in Health, Illness, and Patient Care. Cambridge: Cambridge
University Press.

230
 22 Learning to Be a Leper: A Case Study in the Social Construction of Illness 231

The second contribution is a better understanding (Note that the version of the article that appears
of how health providers may inadvertently stigma- here has been adapted from the original version
tize the patients they are trying to help. She was published in 1981; see the source line on the bottom
coeditor of the 2006 volume Cross-Cultural Caring: of the previous page.)
A Handbook for Health Professionals.

People who feel ill often first discuss their symp- social expectations and not simply by the biological
characteristics of leprosy.
toms with family members or friends and then later If the social transformation of the disease has such
go to a physician who questions, evaluates, and per- profound effects on those who experience it, then we
haps prescribes treatment. In the course of this explo- must ask how a biological phenomenon has taken
ration the “trouble” itself is transformed from vague on such a definition. Is there some inherent quality
and disconnected symptoms to a labeled condition, of the disease—perhaps its communicability, threat
that is, an illness that others in the society understand to life, its disfiguring effects—that determines social
to have a particular explanation and social meaning. expectations? Or are social definitions of particular
Thus, social negotiations turn symptoms into social diseases specific to certain societies and historical cir-
facts that may have significant consequences for the cumstances? Finally, why are certain social definitions
sick person. perpetuated, for example, the terrible fear of leprosy,
. . . We shall look at several aspects of this “social in the face of a known cause and effective treatment?
labeling” process.1 In particular, we shall stress that One way to consider these questions is to examine
the definition of a specific disease and associated disease and illness cross-culturally. A cross-cultural
social expectations often depend as much on the soci- analysis of leprosy controls for the nature of the dis-
ety and culture as on the biological characteristics of ease but varies societal and historical factors, giving
the disease itself. People diagnosed as having a par- us an opportunity to ask whether the stigma of lep-
ticular disease learn “how” to have it by negotiating rosy is universal (thus perhaps associated with bio-
with friends and relations as well as with people in logical phenomena) or whether social definitions dif-
the treatment system; this process is affected by soci- fer from society to society. . . . We shall document the
ety’s beliefs and expectations for that disease. Finally, truth of the second alternative, that there is consider-
society’s definition of and expectations for a particu- able variation in the social and moral definition of lep-
lar disease are sustained by social and organizational rosy across cultures, and speculate that this variation
forces that may have little to do with the disease itself may be linked to specific historical events.
as a biological process. We also ask how patients respond when caught
Leprosy is a disease in which the process of social up in their own society’s definition of the disease, and
transformation is clear. Leprosy has a known cause, we show that the career of the diseased person reflects
an effective treatment (but no cure), and thus a pre- society’s expectations. American lepers, though stig-
dictable outcome. From the perspective of the medical matized, tend to respond aggressively, “taking on”
model, if the patient is treated quickly and regularly, the disease and the society; Ethiopian and Indian lep-
the bacillus is controlled, and the patient will recover; ers stigmatize themselves and withdraw, complying
routine and scientifically neutral treatment is all that with society’s definition even before others recognize
is required. But Westerners and many Asians—even the disease.
those who have never seen a leprosy patient—may Finally, we question how and why particular
suspect that scientific treatment of the biological phe- moral definitions of disease continue unchanged.
nomenon misses the point. Often leprosy is feared; Why are the stigma and fear of leprosy still prevalent
lepers are shunned; we say of a deviant community in many countries when an effective treatment is read-
member: “He’s like a leper.” Doctors in Indian hospi- ily available? In this regard we examine the organiza-
tals refuse to see cases; attendants in Ceylonese hos- tional and social context in which care is offered and
pitals refuse to change dressings; wives begin divorce show that the medical organizations that treat leprosy
proceedings when husbands are diagnosed as lepers; may have had an important although inadvertent part
patients leave their villages to become urban beg- in perpetuating the stigma of the disease.
gars. In some societies, then, routine treatment is nei- Leprosy is an exotic disease, one that most of us
ther given nor received. Responses to the disease by have never seen. We examine it here for the same
patient, family, and doctor are strongly influenced by reasons that many anthropologists examine exotic
232 Part I—Understanding Medical Anthropology: Biosocial and Cultural Approaches

cultures, to reflect on common phenomena. Studies “cure,” and presumably no cure will be known until
of diseases such as leprosy that have clear and strong the causal factors are understood more clearly. These
moral definitions in some societies provide insights drugs are known to arrest the growth of the bacteria,
into the moral component of all diseases. We can however, and to cause a drop in the bacteria count in
expect, then, that similar analytic principles might be most but not all patients; after three months the dis-
useful in understand our own society’s definitions of ease is usually no longer communicable. For patients
tuberculosis, heart disease, schizophrenia, and cancer. whose disease has progressed to the stage of physical
malformation, surgery is also used.
The World Health Organization3 estimates the
worldwide prevalence of leprosy to be about 10 mil-
SOME MEDICAL FACTS ABOUT lion cases, or 0.8 per thousand. Ninety-four percent
LEPROSY of these cases are in tropical Africa and Asia. Of the
total number of estimated cases, only one-third are
Leprosy has been known for thousands of years as a registered with a health agency, and only one-fifth
chronic and communicable disease affecting the skin, are being treated. Although Westerners usually think
eyes, internal organs, peripheral nerves, and mucous of leprosy as a problem “over there,” an average of
membranes. Not until 1873, however, did Hansen report 100 new cases of leprosy was reported each year in
the discovery of Mycobacterium leprae, now thought to the United States during the 20-year period following
be a causal factor in the disease, and only recently has World War II; of these, approximately one-half were
an agent, the nine-banded armadillo, been discovered foreign-born residents.4 In the Commonwealth of
in which the bacteria can be cultivated experimentally. Massachusetts, an average of one case of leprosy per
Pending effective cultivation and experimental tests, year has been reported since 1970.
the exact relationship between the bacterium and the If we construct a picture of the “typical” leprosy
disease is not clear, although researchers assume that patient from the medical facts, then, we see a man
the bacterium plays a part in the disease. or woman whose symptoms are mild enough to be
Leprosy is assumed to be only mildly commu- unrecognizable to the layperson, who sometime in the
nicable, even though the mode of transmission is past may have lived or worked closely with a leper.
not entirely understood. It is usually suggested that During the time the disease was harbored it is rela-
long-term skin or respiratory contact of 10 or 15 years’ tively unlikely that it was passed along to others. If
duration is required for transmission. Alternatively, the disease is diagnosed early and treated regularly
however, a long incubation period is also known. with the appropriate drugs, the patient’s symptoms
American soldiers, who presumably were infected will disappear and the disease will be arrested if not
abroad during World War II, became symptomatic cured, leaving no visible signs.
2.9 years later (for tuberculoid leprosy) and 9.3 years This should be the “medical career” of the typical
later (for lepromatous leprosy).2 Further, some immu- leprosy patient today. Even in many African and Asian
nity factor also is hypothesized. countries, treatment is available and known to ordi-
The common stereotype of the disease, in novels, nary villagers, and thus it is quite possible for a leprosy
films, even in fund-raising literature, is of a person patient to receive early outpatient treatment, exhibit
whose fingers have fallen off, without a nose, with few visible symptoms, and carry on ordinary social
terrible ulcers on the skin. In fact, the most common activities. Why is it possible, then, for lepers in Nigeria
symptoms of leprosy, especially in the early stages, to follow this career and for Indian lepers, on the other
are mild and unremarkable. Anesthetic skin (caus- hand, to experience profound changes in their whole
ing secondary problems such as accidental burns), life, to lose their occupations, their wives, their chil-
raised patches resembling eczema, skin ulcers that do dren, their very identities? That is, how and why does
not heal, for example, are usual; the unremarkability the moral definition of the disease vary across cultures?
of the symptoms often contribute to late treatment.
Only after many years without treatment do leprosy
patients experience severe malformation and dys-
function of the kind that might be readily recognized IS LEPROSY UNIVERSALLY
by the layperson. STIGMATIZED?
Currently the most common treatment is sul-
fone drugs administered over a long period. In Sri It is easy for Westerners to assume that leprosy is stig-
Lanka, for example, leprosy patients are expected matized in all societies. . . . This assumption has been
to continue treatment for a minimum of five years made without question by a number of authors who
following diagnosis. No one terms these drugs a have then offered a functional hypothesis about stigma.
 22 Learning to Be a Leper: A Case Study in the Social Construction of Illness 233

These authors suggest that because leprosy is univer- laws perpetuate these norms. There is great fear of
sally stigmatized, stigma must function as a sort of contagion (an Indian friend advised, “If you talk to a
social protection device. That is, the moral definition leper, put your handkerchief in front of your nose and
of leprosy was developed to explain and justify socie- mouth”) and repulsion at the sight or even thought
ty’s need to isolate lepers from the majority group that of a leper. Those who discover that they have the dis-
the communicable disease threatened. The assump- ease often leave or are pushed out of their homes, to
tion, then, is that the disease is indeed inherently life- migrate to the cities to the “normal” role of a beggar.
threatening, that society must protect itself from such
a disease by isolating those who are afflicted, and that   
the moral ideology regarding leprosy is society’s justi-
fication for its own self-protection. But if we look at Sri Lanka (formerly Ceylon), we
But does the moral definition of the disease come see a different picture. Here, again, the general popu-
from the quality of the disease itself or from the social lation fears leprosy and believes it to be extremely con-
and historical conditions in which the disease exists? tagious and to result in hideous deformities; few have
One way of answering this question is to investigate seen a leper, however, even in a population where
the extent to which the stigma of leprosy differs across best estimates indicate that the prevalence is 0.37 per
societies. If we assume that the basic biological char- thousand.9 One might expect that the Sri Lankan lep-
acteristics of leprosy are much the same everywhere er’s life experience would be similar to the Indian’s,
in the world and we find that social and moral defini- including rejection and mobility. Our interviews of
tions are not, then we must conclude that these social lepers receiving outpatient treatment indicate that
definitions cannot be explained simply in terms of this is not so.10 Instead, we found that leprosy patients,
the biological nature of the disease itself. Reflecting after diagnosis, remain in their own homes and carry
on this hypothesis, we look at the social definitions of on the same occupation that they had before the dis-
leprosy in India, Sri Lanka, and Nigeria. ease appeared. The schoolteacher continues teaching;
The Indian definition of leprosy can be quickly the housewife continues cooking and caring for chil-
understood by reference to one set of facts. Of 100 peo- dren; only one man, a baker, left his job, he reported,
ple with leprosy being treated in the city of Lucknow, because the physical symptoms prevented him from
53% had been born and raised in rural villages; after doing his work.
their leprosy was discovered, all but 18% of this group Families of patients remain intact as well. Those
had migrated to the city, away from home and fam- who were married before diagnosis remained mar-
ily; 66% of these migrants never returned to visit their ried; several more were married after the disease
homes; many became beggars.5 As Kapoor reports, appeared.
“The attitude of the society toward these unfortunate
people is so cruel and cynical that the victim of the   
disease feels isolated, despised, and virtually excom-
municated.”6 Such rejection of people with leprosy is Thus, there is little of the overt rejection reported
also apparent in Indian leprosy hospitals themselves, in India. Yet life is not entirely unchanged for Sri
where it has been reported that doctors in charge Lankan lepers. Most patients, in fact, withdraw
sometimes refuse to touch the patient’s body when from society to some extent; they stigmatize them-
treatment or diagnosis is required.7 selves. When asked what advice they would give
These informal norms were formalized in Indian to other patients, our leprosy patients said, “Do not
law. Before the 1950s in India, all pauper lepers were move around the village,” “Do not visit others’ homes
segregated regardless of the level of infectiousness. unless it is absolutely necessary.” They apply similar
Lepers were excluded from all inheritance in the joint advice within their own families (and usually follow
family, were barred from traveling in trains with non- this advice), saying, “Use separate eating utensils and
lepers, were not eligible for insurance, and were not sleep separately.” And there is general but not unani-
allowed to serve in the military. In the 1950s the laws mous agreement that it is better not to tell nonfamily
were changed to allow normal inheritance of prop- members about the illness; “Others will be afraid,”
erty by leprosy patients but at the same time to pro- “Others might stop visiting, even stop working with
vide for judicial separation and divorce when leprosy us.” Leprosy patients, then, are fully aware of the
appeared in a married man or woman. A proposal stigma of the disease; their response is to avoid pos-
has also been made for compulsory sterilization of all sible rejection by mild withdrawal and secrecy.
infectious male patients.8 Yet often the secret of leprosy cannot be kept for-
From all reports, then, lepers are often physically ever. When villagers discover that someone they know
and socially rejected in Indian society; some modern has leprosy, their first response is fear and rejection;
234 Part I—Understanding Medical Anthropology: Biosocial and Cultural Approaches

but that often disappears over the years, and rela- How can we account for differences in the moral
tionships return to normal. One patient reported that definition of leprosy that are apparent in different cul-
when the villagers found out about his illness, “They tures? Perhaps the incidence of the disease, variations
went to the Montessori school my son was attending in subtypes, patterns of immunity, or effectiveness of
and asked the teachers to separate him from the oth- treatment contribute to a society’s perceptions. But
ers. Then the children began to harass my son. So I these may play a minor role in comparison with the
wrote a letter to the rural development society telling culture norms and historical circumstances in which
them they could call any doctor and give me an exam- the disease is found. Lepers in India may easily be
ination. They didn’t do that but the harassment of my rejected because a clear and elaborate hierarchical
son stopped after that. I know the doctors would not caste structure, justified by the ideology of impurity
say I had leprosy because the treatment is kept secret and sin, is available into which a threatening person
and they wouldn’t tell what it was.” For this man stig- may be placed. Caste beliefs and caste practices (not
matization early in the course of his illness also meant eating with, not touching, not sitting with) serve very
that villagers stopped using his well for bathing. “But well to handle society’s fear of the leper. It is easy,
now [seven years later] they use the well again and then, for normal people in Indian society to equate
relations are back to normal.” leprosy with punishment of sins and to treat lepers
Although the general population in Sri Lanka as outcastes. The cultural background of Sri Lanka is
seems to favor rejection and isolation of lepers, the quite similar to that of India, but with two crucial dif-
actual experience of many of these patients is quite ferences. The caste structure is less hierarchical (more
different. Families accept the patient, marriages con- than half of the population belongs to the high cul-
tinue, and, over the years, neighbors who might have tivators’ caste), and the majority of the population is
been afraid at first resume normal relations. Patients Buddhist, not Hindu. The Sinhalese experience with
themselves sometimes withdraw into their families low-caste, and particularly outcaste groups, is rela-
and avoid unnecessary nonfamily contact. This is not tively small; traditional caste obligations of family to
true, naturally, for all those with leprosy, but the gen- family have generally disappeared, and the concern
eral pattern, relative to the Indian one, is of acceptance with who is who and how to behave in the company
or at least tolerance. of other castes is narrowing. Further, Buddhism’s
Nigeria provides an even more benign example.11 stress on tolerance of differences and on compassion
Among the Hausa of Northern Nigeria, leprosy is for others contrasts with Hindu values. These cultural
highly prevalent, as it is in India. In this peasant agri- and structural differences, then, may help explain
cultural, largely Muslim, society, indigenous beliefs why the general population in Sri Lanka fears and
about the cause of leprosy include gluttony, swear- wants to reject lepers but the family and neighbors of
ing falsely by the Koran, [and] washing in the water leprosy patients actually accept them with little per-
a leprosy patient has used. Treatments may consist of manent stigma.
burning and scraping the skin, purges, and potions. By examining leprosy in India, Sri Lanka, and
Although leprosy is common, modern methods and Africa we have shown that lepers are not universally
theories not understood, and traditional treatments stigmatized. Thus it is unlikely that the social defini-
probably ineffective, no one is afraid. “The Hausa, in tion of leprosy arises entirely from biological qualities
contrast to the West, exhibit little fear or disgust con- of the disease itself, that is, from its degree of con-
cerning leprosy. They do not seem to regard it with tagion or visible symptoms. Instead, stigma may be
any special apprehension; it is not necessarily more linked to particular historical and cultural conditions,
unusual than any other of the great range of diseases specific to each society.
that assail them.”12 Lepers continue to reside with their
families, living a normal life until the very advanced
stages of the disease. “At this point there seems to be a
distinct change in vocation with many of the victims HOW DOES THE MORAL DEFINITION
becoming beggars,”13 but begging itself is an accepted, OF LEPROSY DEVELOP?
nonstigmatized role among Muslims.
How does a disease come to be feared and stigmatized
   in some cultures, yet remain an unremarkable fact of
life in others? This is obviously a complicated ques-
Variation in the degree to which leprosy is stig- tion to which there can be no single answer. We might,
matized is apparent across Africa, with reports from however, find some answers in historical conditions
Ethiopia14 that resemble the experiences of Indian or in the cultural and social matrix in which the dis-
lepers (divorce, migration, begging), and mild rejec- ease is embedded. Many explanations are buried in
tion or none at all in Nigeria and Tanzania.15 the past; in India the extreme stigma of leprosy is
 22 Learning to Be a Leper: A Case Study in the Social Construction of Illness 235

certainly not new. Nineteenth-century Hawaii, how- The Chinese were blamed, stigmatized, and
ever, provides one well-documented case in which the excluded. Yet if we look more carefully at Hawaiian
moral definition of leprosy is related to specific his- Board of Health records, it is not at all clear that the
torical, economic, and social circumstances.16 Chinese actually brought leprosy. Writing in 1886,
In the 1840s in Hawaii, and elsewhere in the West, the then superintendent of the Molokai Leprosy
leprosy had almost disappeared, and when it did Hospital inquired about early cases to discover that
occur was considered to be a hereditary household leprosy was recognized by missionaries in 1823 and
disease. It was of minor importance, not stigmatized, by a physician familiar with the disease in 1840, a
a disease that most people did not encounter. Soon decade or more before the great influx of Chinese
after mid-century, however, Hawaii’s economic and laborers.20 Health data support the conclusion that
social situation began to change, reflecting the world- the Chinese were not an important source of leprosy.
wide movement of people at the height of colonial- In the period 1866–1885, the Molokai Hospital
ism. Europeans moved out to the colonies; Americans admitted 3,076 patients, 2,997 of whom were native
traveled for purposes of trade. Chinese began to move Hawaiians, 22 were Chinese, and the remainder
the other way, to Hawaii to work on the plantations Europeans, Americans, and Africans.21. . .
and to the American West during the gold rush. In In analyzing this phenomenon a hundred years
1851 the first group of 180 Chinese immigrants arrived later, we might conclude that the Chinese became
in Hawaii, and by the 1860s the movement of Chinese convenient scapegoats for Western society. Whether
to Hawaii had become a flood. they actually brought leprosy—and it is not clear that
The Hawaiians believed that the Chinese had they did—the presence of the disease in Hawaii pro-
brought leprosy. In the 1850s Hawaiian authorities vided a rationale for rejection that in fact had other
noted an increase in leprosy, but newspaper reference basic causes. First was the potential or real economic
to leprosy “was purposely omitted . . . for fear of injur- threat that native Western workers may have felt
ing . . . commercial development.”17 By 1862 it could from Chinese laborers. If Chinese could be believed
not be ignored and was publicly described as a major to have leprosy, that fact made a convenient excuse
outbreak of the disease. This raised several questions for excluding economic competitors. Second was the
in the minds of Hawaiians, and in the minds of health 19th-century belief in the inherent inferiority of non-
officials around the world. If Hawaii had suddenly white people. If the Chinese could be believed to have
experienced a serious increase in leprosy, could one a threatening contagious disease, so much the better
still cling to the idea that leprosy was hereditary? And because that would confirm the Westerner’s sense of
if it were not hereditary, who carried the disease? superiority.
In 1865 Hawaii’s official response to the outbreak If the Chinese were stigmatized ostensibly
of leprosy was quarantine of lepers, implying a belief because they brought leprosy, then the association
in contagion. This was confirmed in 1874 by Hansen’s could also work the other way; leprosy became stig-
discovery of the bacillus Mycobacterium leprae. Within matized because it was common among the Chinese.
one or two decades, at a time of vastly increasing pop- This phenomenon may have occurred in the Western
ulation movements, world opinion shifted from belief world, and particularly in Hawaii. The result, by the
in inheritance to belief in contagion. end of the nineteenth century, was the transforma-
The Chinese who were believed to have brought tion of a relatively unknown disease into a socially
leprosy to Hawaii and the western United States were and morally threatening phenomenon. In this case
“industrious, painstaking, persevering and frugal— the moral definition of the disease came from and was
qualities which in Caucasian Protestants undoubtedly reinforced by the moral and social definition of those
would have been considered virtues.”18 Yet they were believed to carry it.
also viewed by white people, in that age of social The association between particular historical events
Darwinism, as natural cultural inferiors. Further, they and the appearance of leprosy in Hawaii may explain
provided cheap labor, and their industriousness perhaps why leprosy became a stigmatized disease there. In
threatened poor Westerners who wanted work. Thus, other cultures quite different circumstances may influ-
“while there were many demographic–environmental ence the moral definition of the disease. We can look
factors at work other than the coincidence of Chinese again at Africa for evidence of another definitional pro-
immigration with the leprosy outbreak in Hawaii cess, the introduction of stigma by Western medicine.
that might have triggered the epidemic, the Chinese, In northern Tanzania, . . . there was traditionally
nevertheless, almost immediately came to bear the full little stigma attached to leprosy; patients lived with,
brunt of responsibility, a stigmatization of them that ate with, slept with their families. Leprosy was an
soon reached monstrous proportions.”19 unremarkable disease. But in 1966 the Geita Leprosy
Scheme was inaugurated, focusing not only on case
   finding and treatment but also on public education.
236 Part I—Understanding Medical Anthropology: Biosocial and Cultural Approaches

Talks were given to school children in grades 5, 6, and definition may have been inadvertently suggested by
7 once every two years; key members of the commu- scientific medicine’s public health educators. Thus,
nity were also reached, although the general public depending on specific historical/economic/cultural/
was not directly educated about the disease. Infor- medical “accidents,” leprosy, and by implication per-
mation on cause, symptoms, mode of transmission, haps all diseases, are transformed into illnesses hav-
treatment, and social problems was included in each ing culture-specific social and moral definitions.
additional effort; thus Western medical notions about
leprosy were introduced into the traditional system,
largely through the children.
A survey conducted five years later showed how LEARNING TO BE A LEPER
effective this educational effort had been. In response
to almost all information questions about the disease, A society’s expectations for lepers, its beliefs about
“The majority of the school children expressed the them, have a significant influence on their experiences
modern view of leprosy as being caused by certain bac- as sick people. If we examine what a particular patient
teria and by physical contact with a patient, whereas does when he discovers he has leprosy, we find that
the adult population and the leaders associated lep- his response to leprosy is consistent with society’s
rosy more frequently with such factors as heredity, expectations for lepers. In fact, he learns to be a leper,
witchcraft. . . .”22 Whereas the educational program the kind of leper his family and neighbors, even his
“stressed that there is no need to isolate the patient doctors, expect him to be.
provided certain basic rules of hygiene are maintained, Ethiopia provides one example of the leprosy
and that there is no reason to discontinue marriage to patient’s confirmation of his society’s beliefs about
a leprosy patient,”23 there was a surprising finding. his disease. Leprosy there is feared and stigmatized.
School children, targets of this education, opposed “People entering the bus which links the area around
the idea of leprosy patients sharing food and sleeping the leprosy hospital to the center of town will cover
space with family members, and objected to leprosy their nose and mouth. When there is an important
patients marrying. “Another illustrative example of visitor to the hospital . . . the patients may be confined
attitudes derived from health education is that of the to their wards.”27
sellers at the Sengerema market who, after a health Those who discover that they have leprosy
education session by the Geita Leprosy Scheme some respond to this social definition in the way we might
years ago, for the first time in Sengerema’s history, expect. Often they stigmatize themselves. In a sam-
urged their colleagues suffering from leprosy not to ple of 100 leprosy patients interviewed in the leprosy
enter the market again.”24 Thus, together with scien- outpatient clinic in Addis Ababa, Ethiopia, a fairly
tific medicine’s facts about causation and treatment, common patient career was apparent. One-fifth of
other attitudes had inadvertently been added to the the patients had been rejected by their families or
society; the new idea of infection had presumably led had voluntarily left their homes. Half of the lepers
Tanzanians to recommend avoidance and even rejec- continued to attend church, “although this does not
tion of people with leprosy. mean that they actually entered the building. Seven-
In Tanzania, we see what could be the beginning teen refrained from going, mainly out of fear of being
of a new moral definition of leprosy, introduced rejected.”28 Of those who remained married, one-third
without intent by public health educators. A some- stopped having sexual relationships. But many mar-
what similar phenomenon seems to have occurred riages did not continue. One-half of all lepers who
in Nigeria25 and elsewhere26 when Western modes of were married at the outbreak of the disease were later
treatment—isolation in leper colonies—were intro- divorced; of these divorces, one-half were actually ini-
duced by Christian missionaries. In neither instance tiated by the patient. (This divorce rate is much higher
is there evidence that the general public’s attitude than that of the general population.) Finally, one-fifth
toward leprosy underwent a radical shift toward stig- had migrated to the city to become beggars.
matization. Yet what we see in this [20th] century in
Tanzania and Nigeria may appear, in the next century,   
in a more institutionalized form.
The cases of Hawaii and Africa provided exam- The response of Ethiopian lepers to their predica-
ples of two different processes through which an ordi- ment is consistent with the fatalism of the Ethiopian
nary disease may take on a particular social and moral peasant. Many American lepers, on the other hand,
definition. In Hawaii it appears that the status of those take a role that is almost a caricature of American val-
believed to carry the disease—the inferior yet econom- ues: They “fight back.”
ically threatening Chinese coolies—may have been Leprosy patients treated at the U.S. Public Health
transferred to the disease itself. In Africa a new moral Service Hospital at Carville, Louisiana, begin with
 22 Learning to Be a Leper: A Case Study in the Social Construction of Illness 237

the assumption that the public fears and stigmatizes the American leper showing a film to the Lions’ club.
lepers. Some report experiences with families or com- But underlying that difference is a more basic simi-
munities that confirm the existence of fear and even larity: Lepers learn how to be lepers from the beliefs
rejection. And some leprosy patients accept the public and expectations their society has for them. In every
definition of the disease by withdrawing to the haven society the sick person is socialized to take a role the
of the Carville hospital, where they are allowed to society expects.
live the remainder of their lives. Yet those who make
this choice do not willingly accept the beliefs about
leprosy that are associated with stigma, beliefs about
extreme contagion, deformity, and incurability. HOW IS THE MORAL DEFINITION OF
Instead, patients who voluntarily withdraw from LEPROSY PERPETUATED?
society support another segment of the patient pop-
ulation, those whom Gussow and Tracy call “career Even though leprosy is sometimes feared and lepers
patients.”29 It is these career patients who take on a stigmatized, and even though leprosy patients often
peculiarly “American” role, one that is undoubtedly willingly take on the deviant role that society expects,
respected by the public. They become professional why do such moral definitions continue far beyond
educators, acting as representatives of all lepers in the time when effective treatment is readily available?
an attempt to change the public’s view of the disease. Wouldn’t one expect that as the disease becomes eas-
They give talks at Rotary clubs, organize seminars, ily treatable the fear and threat would subside?
speak about leprosy on the radio, conduct tours of To examine this question we must return to
the leprosy hospital, publish The Star. The content of the situation at the end of the 19th century, when
their educational attempts is a new set of beliefs about although a pandemic of leprosy was feared by Euro-
leprosy, beliefs that are designed to replace the “old” pean and American observers, it did not occur. The
ideas that justified stigma. public at the time believed leprosy to be highly con-
tagious, but very few people actually contracted the
   disease. The panic died down. Leprosy was limited to
tropical people, usually the poor, and did not become
The assumption behind this new ideology, pro- a threat to colonial settlers. Although an official state-
moted by the career patients, is that American soci- ment was made in 1909 that leprosy was incurable,31
ety’s fear of leprosy will wither away as the public by the 1920s a moderately successful treatment had
learns the “truth” about the disease. No longer will been instituted, and by the 1940s a more effective one.
lepers feel wrongly labeled and no longer will they be We must ask why fear of leprosy and rejection of lep-
stigmatized. ers continued in many societies when, in reality, most
In a sense, these career patients are America’s people in those societies had discovered that leprosy
version of the Ethiopian beggar. Their response to was relatively nonthreatening. Here, again, we shall
leprosy is consistent with American values on activism, look at social and organizational contexts in which the
self-sufficiency, and change; when they see a problem, disease exists rather than at the biological qualities of
especially a problem for themselves, they try to solve it. the disease itself.
They do not respond like the Ethiopian fatalists. At the In the second half of the 19th century, when it
same time, however, from the point of view of the pub- was believed that leprosy was not only highly conta-
lic, they are not “normal.” They are still lepers, whose gious but life-threatening, the churches acted. Father
role as educators depends on existence of the disease Damien established the leper hospital at Molokai,
itself. “At the present time this status [as career patient] Hawaii, in 1860 and died there, from leprosy, in 1889.
appears to be the only legitimate one the leprosy patient The Mission to Lepers was established in Great Britain
has available to him for life in open society.”30 in 1874. The Louisiana Home for the Lepers, now the
Lepers in the United States learn to be the kind U.S. Public Health Service Hospital at Carville, was
of lepers Americans expect. To confirm the lay founded by the Catholic Church in 1894. During this
American’s fears of leprosy, they withdraw, avoid, time, of course, numerous missionaries were sent out,
protect themselves, and protect others. But they do to Africa, India, Oceania, to treat lepers. Not until the
these things reluctantly and temporarily, until their 1920s did nonreligious organizations enter the field,
active educational efforts succeed in changing public and they still remain of minor importance compared
opinion. In the meantime, those who go openly into with the worldwide involvement of missionaries.
the outside world go labeled as “leper,” fulfilling our Even today the nursing staff at the U.S. Public Health
expectations that lepers are indeed “different.” Service Hospital at Carville is provided by the Sis-
There is a world of difference between the Ethi- ters of Charity of St. Vincent de Paul.32 Also today the
opian leper begging in front of the train station and American Leprosy Missions and the Leprosy Mission
238 Part I—Understanding Medical Anthropology: Biosocial and Cultural Approaches

(of Great Britain), foundations that finance treatment be dependent for the rest of their lives. The Mission
centers all over the world, integrate Christian ideol- cares for such as these also.”34 Removal of lepers from
ogy with treatment goals. “The main object of the the “normal” community serves to confirm the idea of
Mission is to minister in the name of Jesus Christ to stigma. People in Sri Lanka may say, “If lepers must
the physical, mental and spiritual needs of sufferers be sent to a remote island for treatment then there
from leprosy, to assist in their rehabilitation, and to must be something very terrible about them and their
work toward the eradication of leprosy.”33 disease.” Stigma is thus confirmed.
Thus certain groups, church groups in this case, Leprosy organizations have not only removed
came to “own” the disease. They set up hospitals, threatening people from community view, they have
trained staff, searched for patients, collected and dis- also demanded little change on the part of “normals”
seminated information, and spoke and acted “for” the by focusing their work largely on treatment and reha-
lepers. Because leprosy was in many places greatly bilitation rather than on prevention or on public edu-
feared, those who did this work took on an aura of cation to reduce stigma. . . .
saintliness. . . . Thus, leprosy organizations, by building perma-
We have introduced two important facts about lep- nent inpatient hospitals and stressing treatment of
rosy since 1920. First, private church-related organiza- stigmatized patients rather than change in the pub-
tions became the main providers of treatment to leprosy lic’s view of the disease, have acted “for” the normal
patients, collecting funds mainly from the industrial community. In many cases leprosy patients, even in
West and funneling money to nonindustrial tropical the United States, remain permanently under organi-
countries. Second, in many (but not all) of these non- zational control and do not return to their communi-
industrial countries, leprosy was strongly stigmatized. ties.35 We expect that so long as these organizations
One might expect that, once an effective treatment continue to remove leprosy patients, they will be sup-
became known and once the missionary organizations ported by the community. . . .
began to provide this treatment, the stigmatization of Leprosy organizations, like many medical foun-
leprosy would decline. Changes in definition of the dations, are dependent on public donation of funds.
disease might be slow, might take decades, but with As Scott has suggested, funds may be contributed
effective and available treatment fear and thus stigma more generously if such organizations confirm popu-
would disappear, even in India and Ethiopia. lar beliefs by medical and social science. Spokesper-
Yet they have not disappeared. In fact we suspect sons for these foundations have suggested as much, in
that the organizations most committed to treating and discussions of the change from “leprosy” to “Hansen’s
curing may have, inadvertently, had a part in perpet- disease,” when they say: “There is a case for retaining
uating the stigma of leprosy, through a complex and the substance of current terminology related to lep-
circular relation between the expectations that some rosy particularly because of its value to fund-raising.”
societies have for people with leprosy and the organi- They explain that appeals for “overseas” charity, for
zational constraints and requirements for the leprosy Asian and African patients, must compete with 77,000
organizations’ own survival. charities at home and “the evocation of a reaction to
“Normals” in the community prefer to have devi- the word leprosy is an essential factor.”36 Thus, lep-
ant people of many sorts removed from view and rosy foundations may, to sustain themselves, find it
cared for by others. . . . necessary to allude to the idea of threat and to support
Leprosy organizations have taken the responsibil- the community in its willingness to stigmatize.
ity for the care of lepers from “normals” and have in
many societies done just what the community wants, 
removed the leper from view. Inpatient facilities are
often completely contained villages providing not Westerners, vaguely threatened by a terrible dis-
only treatment but also employment, education, and ease, and certainly somewhat guilty about but very
recreation. There is often no need for a leprosy patient willing to turn the care of such patients over to others,
to leave this “asylum” and, in fact, it is sometimes can do only one thing: give donations. As the Ameri-
physically difficult to do so because leprosy hospitals can Leprosy Bulletin suggests, the fact that immunity
are often found on islands (for example, in Sri Lanka to standard drugs is occurring more frequently “is
and the Philippines) or in the remote countryside. nothing short of terrifying, simply because, to date,
In fact, organizations justify the isolation of leprosy there is absolutely no other drug that is readily avail-
patients by reference to the community’s stigmati- able, as free of negative side effects, as inexpensive
zation of lepers. “Some are rejected by their homes and as effective as DDS has been up until now. . . .
and families . . . for some there is, humanly speak- The quality of care must be raised until a high pro-
ing, no hope; their disabilities mean that they will portion of cases are found early and treated regularly.
 22 Learning to Be a Leper: A Case Study in the Social Construction of Illness 239

Five dollars per year is not enough. Thirty dollars is a debilitating illnesses that many families must tolerate.
more reasonable figure, but in many areas adequate Patients remain at home and marriages continue. In
care cannot be given for less than fifty to sixty dollars other societies, lepers are quickly divorced, pushed out
per patient per year.”37 All one needs to do, then, to of their homes, to end up as beggars. This cross-cultural
be relieved of the burden of dealing with stigmatized variation in the stigma of leprosy led us to conclude
people, is to give money, in this case, to keep the dis- that the source of a particular response is in the social
ease out of sight in the poor tropical countries. and cultural matrix in which the disease exists.
Much of what is stated in these messages is, In many societies beliefs about leprosy developed
according to current scientific knowledge about lep- and stabilized long before written records were kept.
rosy, factually wrong. Leprosy is not a terrible or life- In 19th-century Hawaii, however, we saw the eco-
threatening disease, nor a real threat to Westerners. nomic and social threat of the Chinese immigrants
Service to lepers, like all service, requires devotion, become transformed into the social threat of the dis-
but the degree of risk is not great. In fact, in a growing ease they were believed to carry. In Africa, we pointed
number of countries service to lepers is provided by to the very beginning of what could be a new, and stig-
government health service employees in the same way matized, notion of leprosy inadvertently introduced
as it is for other diseases. It is apparently true that the by public health educators. Thus, the moral definition
immunity of some bacilli has become a problem that of leprosy may arise from particular historical/social/
must be handled by greater expenditure and/or better medical circumstances, different in each society.
planning based on epidemiological knowledge.38 Second, we showed that the ideology surround-
Why do foundations dealing with leprosy arouse ing leprosy provides a map for the leper. Moral def-
fears and suggest stigma—particularly in the face of initions tell the leper how to “have” the illness. We
scientific and experiential knowledge that leprosy is contrasted Ethiopian and American experiences, pro-
not highly contagious and can be treated effectively foundly different, but each exemplifying the effect of
on an outpatient basis while the patient carries on nor- society’s expectations on the leper’s career.
mal activities? We have suggested that the economic Finally, once the moral definition becomes estab-
and social commitments of the organizations, justified lished, it is often perpetuated for reasons having very
by an ideology about “important work that remains little to do with the disease itself. In the case of lep-
undone,” requires continued financial and other sup- rosy, even though effective treatment is available in
port. To sustain financial support these organizations the tropical countries where the disease is prevalent,
have learned that they survive only if they confirm and even though the Christian missionary organiza-
society’s preference for removal of deviant people tions that are often the main providers of treatment
from view. Thus, the organizations whose goals are certainly do not intend to stigmatize, the stigma of
“to assist in their [leprosy patients’] rehabilitation leprosy continues. We have suggested that this moral
and to work toward the eradication of leprosy” at the definition of leprosy is often perpetuated by the very
same time perpetuate, through their actions (building organizations that treat the disease through a complex
inpatient hospitals and providing long-term care) and and circular relationship between the community’s
words (public education programs and fund-raising preference for removing deviant people and the lep-
brochures) the community’s ideas of stigma. It is not rosy organizations’ needs for society’s support in order
insignificant that the 1978 brochure of the Leprosy to survive. Both the organizations’ actions (removing
Mission is entitled Set Apart. leprosy patients from society) and their ideologies (in
the form of public educational materials) sustain the
idea that leprosy is horrible and threatening, requires
treatment by “special” people, and is an enormous,
CONCLUSION often hidden, and unending problem. These actions
and beliefs, though not based on medical facts, are
We began with a bacillus, mildly communicable, consistent with the normal community’s definitions
treatable, not life-threatening nor even deforming if of the disease and thus receive most sympathy from
treated early. Now we see that the bacillus itself is prospective donors. To continue their work, then, the
only a minor actor in the drama of leprosy. Instead, organizations that “own” leprosy must sustain the
surrounding the disease in many societies is a set of stigma of leprosy.
social beliefs and expectations that profoundly affect We have examined leprosy because it provides a
the patient’s experience and the doctor’s work. clear example of the social transformation of disease.
First we showed that the stigma of leprosy is not In some societies leprosy is transformed into an illness
universal. In many societies, even where leprosy is that has serious implications for the social career of the
common, leprosy is believed to be just another of the sick person. Similar transformations might occur with
240 Part I—Understanding Medical Anthropology: Biosocial and Cultural Approaches

other diseases. The effects may be milder and the social 10. Waxier, N. E. 1977. The social career of lepers in Sri Lanka.
Unpublished study. The fact that our sample of leprosy patients
transformations less obvious, but if we examine the was obtained from the outpatient leprosy clinic means that we
beliefs, practices, and experiences of patients who suf- have no information on half of the group estimated to remain
fer from other disease, we should see similar processes. untreated. Our conclusions may be biased but in ways that we
cannot determine.
11. Shiloh, A. 1965. A case study of disease and culture in action:
 Leprosy among the Hausa of northern Nigeria, Human Organi-
zation 24: 140–47.
12. Ibid., p. 143.
The social definition of illness [also] has an obvi- 13. Ibid.
ous effect on doctors. For example, not only must they 14. Giel, R., and van Luijk, J. N. 1970. Leprosy in Ethiopian society,
treat the leprosy bacillus, they must also recognize International Journal of Leprosy 33: 187–98.
15. Hertroijs, A. R. 1974. A study of some factors affecting the
and deal with the culture’s beliefs about the disease. attendance of patients in a leprosy control scheme, International
In India and Sri Lanka they must find the hidden Journal of Leprosy 42: 419–27; van Etten and Anten, Evaluation of
patients and convince those in treatment to return for health education.
16. For some of the analysis presented, the author is indebted to Z.
more. In Hawaii and Louisiana doctors must care for Gussow and G. Tracy, 1970, Stigma and the leprosy phenom-
and also justify the continued hospitalization of large enon: the social history of a disease in the nineteenth and twen-
proportions of leprosy patients with inactive diseases tieth centuries, Bulletin of the History of Medicine, 44: 424–49;
Gussow, Z., and Tracy, G. 1971. The use of archival materials in
who do not want to go home.39 The social and cultural the analysis and interpretation of field data: A case study in the
context in which the disease exists must be seen as institutionalization of the myth of leprosy as leper,” American
part of the disease process itself. Anthropologist 73: 695–709.
17. Gussow and Tracy, Stigma and the leprosy phenomenon,
Our understanding of leprosy can move beyond p. 433.
this “conservative” analysis of the relationship 18. Ibid., p, 441.
between social factors and disease. It is not simply 19. Gussow and Tracy, The use of archival materials, p. 706.
20. Mouritz, A. 1886. Report of the Superintendent of the Molokai
that doctors are waiting outside the society with neu- Leprosy Hospital, in Appendix to the Report on Leprosy of
tral values, waiting to step in to treat and to take into the President of the Board of Health to the Legislative Assembly.
account society’s peculiar transformations of disease. Honolulu, Hawaii.
21. Ibid.
Instead the medical institution is part of society 22. van Etten and Anten, Evaluation of health education, p. 405.
itself, and thus is implicated in the social and moral 23. Ibid., p. 417.
definition of disease. We have seen that missionary 24. Ibid., p. 408.
25. Shiloh, A case study of disease and culture in action.
doctors who went to Africa and India took with them 26. “There was . . . no stigma attached to the disease amongst the
a particular conception of leprosy that required isola- Australian Aboriginals until segregation became law and suf-
tion hospitals, and this new treatment method implied ferers were taken from their families and isolated. It seems that
the Aboriginal people have known and coped with the disease
that it was right and good that lepers be taken from at least since the influx of immigrants from leprosy endemic
their homes and isolated from their families. New areas in the middle of the last century—and had no fear of it.”
threats and fears—even the idea of stigma—were thus Editorial. 1977. The Medical Journal of Australia 2(11): 345–47.
27. Giel and van Luijk, Leprosy in Ethiopian society, p. 194.
introduced. These threats and fears, predominant in 28. Ibid., p. 190.
the West, have been strengthened over the years by 29. Gussow, Z., and Tracy, G. 1968. Status, ideology, and adapta-
medical and missionary organizations whose basic tion to stigmatized illness: A study of leprosy, Human Organiza-
tion 27: 316–25, p. 322. These authors assert that in the West the
needs are to survive. stigma of leprosy is a myth perpetuated by treatment agents.
This “myth” is taken quite seriously by the patients themselves;
whether it is actually true is not important for our analysis here.
30. Ibid., p. 324.
REFERENCES 31. Gussow and Tracy, The use of archival materials, p. 700.
32. Ibid., p. 703.
1. Schur, E. M. 1971. Labeling Deviant Behavior: Its Sociological 33. Set apart. 1978. London: The Leprosy Mission.
Implications. New York: Harper & Row. 34. Set apart.
2. Feldman, R. A. 1968. Leprosy surveillance in the USA: 1949– 35. Bloombaun, M., and Gugelyk, T. 1970. Voluntary confinement
1970, International Journal of Leprosy 37: 458–60. among lepers, Journal of Health and Social Behavior 12: 1 6–20.
3. World Health Organization Expert Committee on Leprosy. 36. Hansen: Research, Notes, 1975, 6(1–2): 202.
1970. World Health Organization Technical Report Services, No. 459. 37. American Leprosy Missions, Bulletin, Fall 1978.
Geneva: World Health Organization. 38. Some have suggested that drug-resistance requires develop-
4. Feldman. Leprosy surveillance in the USA. ment of a new treatment strategy that will interrupt transmis-
5. Kapoor, J. N. 1961. Lepers in the city of Lucknow, Indian Journal sion in large populations of leprosy patients. One part of this
of Social Work 22: 239–46. strategy, ironically, may be the need to provide “facilities for
6. Ibid., p. 239. the hospitalization of a larger number of patients than at pre-
7. Ryrie, G. A. 1951. The psychology of leprosy, Leprosy Review 22: sent during the first few months of treatment. This will require
1,13–24. building or remodeling of facilities “; Lechat, M. 1978. Sulfone
8. Kapoor, Lepers in the city of Lucknow, p. 245. resistance and leprosy control, International Journal of Leprosy
9. Heffner, L. T. 1969. A study of Hansen’s disease in Ceylon, 46: 64–67.
Southern Medical Journal 62: 977–75. 39. Bloombaum and Gugelyk, Voluntary confinement among lepers.