Paper 1. Lecture 2,
The recognition of biomedically defined disease and
culture specific illness
Main point of the lecture was: Do not make any equations of one to one between Western
medical and indigenous medical understandings!
Summary of Literature
General reading:
Gilbert Lewis 1975 : Knowledge of Illness in a Sepik Society
Lewis worked among the Gnau in Papua New Guinea and observed how they view illness. In doing so he retains
the conceptual difference between disease and illness. For him disease is defined by biological criteria, whereas
illness is determined by views of particular individuals and cultures and is of social and psychological nature.
With Illness he examines how individuals perceive and interpret changes in their conditions. With disease he sets
boundaries to define the field relevant for the study. Disease is “defined by external modern medical criteria”
as opposed to “Illness as it happens to be recognised in the society [studied]”.
He thinks the divide is useful because in some societies one will find illness associated with misfortune and
magic and if no division for disease is provided, medicine and magic may fall into the same category.
Gnau’s perspective on illness:
The Gnau distinguish wola from neyigeg:
Wola = things undesired = disorders of the body.
Neyigeg = to be sick, to suffer in his person as a whole, mostly used for internal disease
There can be illness of the person or of only parts of the body.
If someone is neyigeg his behaviour changes: lies apart, east separate food and east alone.
Decision to be neyigeg lies with the person himself. If one regards himself critically sick he adopts the behaviour
of neyigeg. Disease is always considered from the point of view of the sufferer and there are no detailed
diagnostic criteria or categories. Severity of illness is showing greater reluctance to take part in communication.
Women sometimes have a special illness behaviour called bengbeng related to collapse or trance experience and
said to be caused by spirit possession.
Among the Gnau illness behaviour is displayed rather than described. There is no vocabulary for clinical
pathology. They describe causes of illness and distinguish illness of body parts or the whole person. Withdrawal
behaviour is appeal for help. The more critical the illness is felt the more they withdraw from the community
Illness among the Gnau can be seen as ‘rites of passage’, because the illness behaviour contains elements of
separation, marginality and aggregation (silence, food abstinence, final purifying wash after illness). Illness
presents a crisis, is like a passport to a new status in society, but is sharply distinguished from misfortune.
Comparison here to Victor Turner 1968 and illness behaviour among the Ndembu, who attain certain rights of
participation in society after having passed through illness and treatment.
Lewis showed with the case of the Gnau that people will find explanations for severe illness. The illdefined disease will attract own explanations which are culturally constructed.
Byron Good 1977: The heart of what’s the matter
In his paper “The heart of what’s the matter” Byron J. Good (1977:1:25-58) describes two case studies of ‘heart
distress’ prevalent mostly among women, aged 15-45, in Iran. Both cases illustrate how the taskonomy approach
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(see Nichter) is absolutely necessary to address the complexities that bring forth the illness label ‘heart distress’
narahatiye qalb.
Good stresses the social and historical realities with a case study of two patients, calling for a new approach in
disease theory, which was just developing at that time (1970s) among medical anthropologists. Good introduces
‘semantic illness networks’. He defines ‘medical semantics’ as the “theory of how the meaning of medical
language is constituted” (Good 1977:26). He argues that apart from theories of disease, “we need a new
understanding of the relationship between medical language and disease.” (Good 1977:26). He looks at the
relationship between signs of a natural disease and the ‘symbols’ of the syndrome as an experience. Semantic
Illness Network conceive of the meaning of illness categories constituted of this relationship.
CASE STUDY EXAMPLE
To take up the first case (Good:1997:34) of Mrs. T. who is 27 years old and has five children, connotative
aspects of her illness identity, include:
 Her socio-economic surroundings: the poverty of eleven people living in two rooms with one single kitchen
and no running water.
 Her educational back-ground: complete illiteracy, so that she cannot even go alone to the market.
 Her social relations: her poor parents and an ill brother.
 Her marital conflicts: her desire to avoid pregnancy and still satisfy her husband.
 Her use of contraceptive pills, which were suggested to her by educated neighbours. But, as she was
illiterate, she associated the contraceptive pill with abortion and took a month supply in an effort to abort her
last child. Her intake of contraceptive pills also increased her heart palpitations and upset nerves.
 Her moral and cultural restrictions: She often felt like screaming, knowing that this was a source of great
embarrassment as the voice of a woman should not be heard outside her courtyard.
In the semantic network all these aspects are taken into account to understand the illness identify and
classification.
The taxonomy of her distress would simply note her physical symptoms and concurrent signs:
 Lack of strength and blood, pounding heart, upset nerves, lack of meat on her bones, depression, a feeling of
her heart being squeezed.
As a result, she received a vitamin tonic from the doctor, and herbal medicines from a health practitioner for her
weakness and heart distress.
Her illness did not change because the multiple causes did not change, and the doctors – Western as well as
naturopathic – had no insight in, or influence on her surrounding conditions.
In the above case Good analyses the main emerging problems of ‘female sexuality’ and ‘oppression of daily life’
(Good 1977:41) by looking at relationships between word meanings in Iranian culture, such as pregnancy menstrual blood - dirty blood - contraceptive pill (Good 1977:42). He concludes that the illness category ‘heart
distress’ is a complex circle of stress factors common to Iranian woman.
Women’s sexual potency and ability to attract men is expressed in Iranian folk literature and Persian folk
ideology. Centuries of history have shaped the restrictions of hiding female sexual potency behind walls and
veils. Menstrual blood is considered impure and a thread to personal piety and the purity of the household (Good
1977:44). For most illiterate women a direct protest is still unthinkable. Consequently, the problem gets
transferred to the physical realm, which again is culturally determined. The heart is the seat of the soul and
feelings in traditional Galenic medicine (Good 1977:36) and is used linguistically to express emotions and
feelings of anxiety and affection. Good explains how the illness gets semantically linked to the heart because of
the semantic network that the heart has with feelings of anxiety, sexuality, menstruation and pregnancy (Good
1977:48).
Comment (from lecture): semantic illness networks (SIN) are more fluid and complex than
explanatory models (EM), they include what people think and feel, use different methods, not
only interviews. SIN should contain indigenous words for illness, and use insider’s categories.
In contrast Mark Nichter’s model on diarrhea diseases (1996) is not a SIN because he uses
biomedical vocabulary. Good stressed to use emic terms.
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EH gave 9 examples of how disease and illness are defined in different cultures
Brief summaries of some of them follow here:
KURU sorcery and CJD
Lindenbaum 1979: Kuru Sorcery
Research among the Fore by Sherley Lindenbaum in the 1960s in South Fore, Papua New Guinea
Historical background
The kuru epidemic lasted almost a century; it started in 1901–1902, reached epidemic proportions in the mid1950s, and disappeared in the 1990s.
The kuru epidemic in the Eastern Highlands of New Guinea took the lives of 3000 individuals; more than 80%
of the known kuru fatalities were recorded in a limited area populated by the Fore people. 200 new cases
annually by the mid-1950s. No individual born after 1960 has ever developed kuru. By the late 1950s,
cannibalism was completely abandoned, and exposure to kuru infectivity ceased. Early anthropological studies
were conducted in 1951–1952 and 1952–1953, at which time the presence of kuru in this area was first observed.
How exactly kuru first appeared in the Fore people is unknown. The most likely possibility is that the kuru
epidemic started with a single individual who died of sporadic CJD and was then consumed by tribesmen in the
traditional ritual cannibalism fashion.breakthrough in studies of kuru was the demonstration of its
transmissibility to experimental apes and other animals extremely long incubation time, relatively slow disease
progression, absence of inflammatory pathology, and an always fatal outcome.
Bimedical Definition of KURU
Kuru is the prototype member of a group of disorders known as transmissible spongiform encephalopathies
(TSEs) or prion diseases. Creutzfeldt–Jakob disease is a variant of Kuru.Currently known transmissible
spongiform encephalopathies (TSEs) include: sporadic, familial and iatrogenic Creutzfeldt–Jakob disease (CJD);
Gerstmann–Sträussler–Scheinker disease (GSS); fatal familial insomnia (FFI); and variant Creutzfeldt–Jakob
disease (vCJD).
Symtpoms:
loss of balance, incoordination, ataxia, slurng of speech, ataxic eye movements, tremor, initial shivering,
involuntarily body movements, then motoric incapacity, death in about 1 year
Until recently, kuru was the only example of oral transmission occurring in humans. The latest TSE member,
vCJD linked to consumption of contaminated beef from animals incubating bovine spongiform encephalopathy,
has a phenotypic similarity to kuru . These two disorders are expected to share other basic disease mechanisms.
Therefore, the results of extensive kuru studies could be used in attempts to curb and eliminate the epidemic of
vCJD in Great Britain and other European countries.
Changes in the Development of Illness definitions
First: psychosomatic phenomenon, directly associated with the threat of fear of what was believed to be an attack
of sorcery.
Later: Kuru is a slow virus infection spread by the ingestion of human flesh.
CJD is a clearly defined neurological disease caused by a PRION, was thought o be a slow virus infection.
KURU is an indigenous explanatory framework for symptoms of trembling, laughing, strange behaviour,
The Fore always believed that kuru was one kind of sorcery (among 34 other variants) To induce kuru, the
sorcerer had to obtain some object intimately associated with the victim. He then placed the object with pieces of
bark and leaves in a bundle and buried the bundle in boggy ground. The sorcerer returned intermittently to beat
the bundle, and with each beating, it was believed, the illness intensified.
FORE KINSHIP SYSTEM
Before the Fore kinship system was studied it was believed that Kuru was hereditary. After analysing Fore
kinship it was clear that hereditary relationships were secondary in their kinship structures.
Characteristics of Fore Kinship:
•
•
Bilateral, horizontally, only 2 generations deep, open, social
brother-sister bond very strong, husband-wife bond loose
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•
•
•
•
“Fagina” with whom you shared food, fluid kin, dependent on movement
“Nagaya” age mates, had strong priority over the brother, died and were buried together
“Waboli” warrior mates
”Nagkwa” Namesakes: life time bondage
THEORY OF ENDOCANNIBALISM
•
•
•
•
1960s: wild animal became rare, led to cannibalism,
women ate the brains which were infected
Bodies of sick people were not consumed, but Kuru was considered sorcery, therefore bodies were eaten
Beth Conklin 2001: CONSUMING GRIEF analysed reasons for cannibalism ( psychoanalytic approach)
Critique:
According to Peter-Röcher 1994, for the Fore it was enough to deal with the dead corpses in an unhygienic way
to be infected with Kuru. It was observed that the Fore never washed their hands after dealing with corpses.
Cannibalism is not necessary to explain the infection. It is apparently a construct of the ethnologists and perhaps
their (male?) informants. (p.210).
NICHTER MARK 1996 “Health Social Science Research on the Study of Diarrheal Disease: A Focus on
Dysentery” in: Anthropology and International Health: Asian Case Studies. Amsterdam: Gordon and Breach
Publishers. 111-134.
Bloody diarrhoea as a sign of amoebic dysentery or shigellosis (biomedical def.) or “ajirna / khaile / roga...”
(local terms)
Biomedical definitions and indigenous concepts overlap. There is a vagueness about the taskonomy.
Availability of drugs also influence the labelling of the condition. His focus is on bloody diarrhea and its
culturally informed assessment and treatment.
Figure 1 shows a summary of the multi-dimensional connotative aspects that are mentioned in Nichter’s
examples of diarrheal diseases, and that eventually form the understanding of what he calls illness taskonomy, in
contrast to disease taxonomy. While Nichter’s illness taskonomy is an advanced and pluralistic approach to
understand and study illness identities in different societies, it remains a fact that disease taxonomy is still the
prevalent limiting attitude towards illness events in many countries.
KIM et al. 1982: NAENG a Korean Folk Illness
Vaginal discharge is seen as a sign of cancer, ulcers or stress in the West or just as a normal sign of sexually
active women. . In Korea it is called NAENG (= coldness) and is associated with coldness of feelings of
sexuality. (‘loose girls’)
(Hsu mentioned to Anne that this article is not important for exams.)
RUBEL 1964: The epidemiology of a Folk Illness: SUSTO in Hispanic America
SUSTO is not a culture bound syndrome ( though Hsu said it is!!), because it has been observed in many
cultures. The susto literature does not say it is culture bound!
Soul loss is a universal phenomena coined with different terms in various cultures in Asia as well America.
There is no clear biomedical dysfunction, unspecific complaints, and has been interpreted in many ways (see
below summary by Greenway)
SUSTO = Spanish: fright
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Is associated with the loss of ajayu, (Schweder 1919) which is the emotional energy giving fluid of the body.
Sign of depression, malnutrition and serious disease, can be fatal.
Discomfort experiences through fright leads to symptoms of loss of appetite, sleeplessness, lethargy, or
restlessness.
Rubel tries an epidemiological approach to study susto. He uses the term “folk” to denote illnesses not
understood by Western biomedicine, consequently creating a dichotomy of ethnocentrism. His interpretation is
entirely etic, viewing susto in the terms of a socially created phenomena, by individuals who cannot conform to
role expectations in their society. He completely leaves out aspects of phenomenology, experience of fright,
indigenous understanding of a subtle body and “soul” and the application of touch during all observed
treatments.
He studied Indian and non-Indian versions of susto in Mexico and described the symptoms appearing generally
in all cases as:
1) restlessness while asleep
2) while awake listlessness, loss of appetite, desinterest in costume or personal hygiene, loss of strength and
weight, depression, introversion.
Indian patients attributed the loss of soul to a local spirit, thus included a great variety of spiritual geography into
the syndrome. The site where the soul was lost is always included in the healing ritual.
Touching the patient is extremely important in the healing ritual, either through massage with herbs and oil or
rubbed with some object to remove the illness, e.g. a guinea pig (Peru) or hen’s eggs (Guatemala) or medicinal
brushes (Texas, parts of Mexico). Often sweating is applied through laying the patient on a bed with glowing
charcoal underneath the bed. For the return of the soul, touching the body is important. Rubel applies the
epidemiological concept of the 1940s, structuring events into “chains of inference”. He comes up with an
explanatory model (Caudill 1958) of three systems: the social, the personality and the individual’s state of
health. He sees the susto syndrome as a product of the interaction between these three systems, from our
viewpoint now a very reductionist approach, neglecting native illness tasconomies (Nichter 2000) and semantic
illness networks (Good 1977).
His hypotheses is:
1. susto will only appear in a social situation which the victim perceives as stressful. They choose to assume
the sick role and select symptoms to show others their absence of well-being.
2. The social stresses which manifest in susto intracultural and intra-societal in nature.
3. Susto appears as a consequence of an even in which the individual is unable to meet the expectations of his
own society.
4. Although all members of this society believe in soul-loss, only some select susto as an illness. This depends
on the individual personality and gender issues and how the personality mediates social role expectations.
Rubels example here is a boy who was asked during a family visit to the river to enter the river and refused
vehemently and later fell ill with susto. Rubel hypothesises that the same situation for a girl would not have
resulted in susto as social gender expectations differ. The girl would have been allowed to be weak and
fearful, but the boy certainly would have been expected to be brave. For him the situation was more stressful
and he fell ill.
Summary
Rubel argues that susto can be subjected to “orderly description and analysis”, because there are elements of
constancy that occur in all cases despite the great variation among different ethnic groups ( Indians, non-Indians)
and geographies.
He maintains that “inferences of causality” drawn from ethnographic data offer a potential to understand the
nature of susto and the relationship between health and social behaviour.
He finally concludes, that if this approach works with one folk illness it can be applied to others, and therefore,
anthropologists should work in collaboration with physicians to understand folk illness.
Critique:
Rubel’s explanatory model does not include emic illness perceptions and is thus redundant in explaining susto
from an insider’s perspective.
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His “inference of causality” is entirely based on a Western perspective of epidemiology and includes only his
own categories of understanding ( individual health, personality, social expectations).
What he does not understand or take into account is the actual moment of fright which also occurs in all
ethnographic examples and the emic understanding that fright can cause a disruption to the subtle body, causing
symptoms of traumatic stress. Greenway (1998) gives more emphasis on the fright experience than on the actual
symptoms of sleeplessness, etc. in her studies among the Quechua in Peru.
Rubel also neglects the importance of touch during the healing ceremonies and the engagement of the senses
which was described by Desjarlais in 1992 among soul-loss among the Yolmo in Nepal.
From a historical perspective, Rubel’s study has to be seen as a reflection of the first steps of anthropologists
towards understanding indigenous illness phenomena proposing a needed collaboration with physicians, in
which he was right. It is as such a respectable endevaour, on which later anthropologists built and which
probably influenced the development of medical anthropology as a discipline in the 1970s.
Susto has since been studied by many anthropologists who have given various meanings to the phenomena:
Illness interpretations of soul loss, aptly summarised by Greenway (1998), include psychiatric disorders (Billig
et al., 1948), hysterical anxiety reaction (Leon, 1963; Pages Larraya, 1967), inability to meet societal
expectations (Rubel, 1964; Uzzell, 1974), fear-induced depression (Rubel, 1964, Shweder 1991), role
manipulation to relieve stress (O'Nell and Selby, 1968; Uzzell, 1974), emotional concerns (Tousignant, 1984;
Wikan, 1989), grief and loss (Houghton and Boersma, 1988), underlying biological causes (Bolton, 1981; Stein,
1981), and pesticide exposure (Baer and Penzell, 1993). The ailment has also been interpreted as a statement
about socioeconomic status and ethnicity (Crandon-Malamud, 1991), as the embodiment of cultural aesthetics
and social structural tensions (Gobeil, 1973), and as a response to trauma associated with violence and political
terror (Delgado Sumar, 1988). Holloway (1994) interprets susto as an adaptive response to normative ambiguity
and uncertainty about future outcomes.
Though some of these anthropologists attempted a more emic perspective it seems hard for most of them to go
beyond a socio-cultural understanding, also including spiritual reality and phenomenology of the senses into
their approaches.
YOUNG 1977: The harmony of Illusions
Young works out the political motivations for integrating post-traumatic stress disorders (PTS) into the mental
disease classification scheme called DSM-III and provides examples of diagnostic interviews.
He shows how mental conditions are classified in political acceptable ways through disease categories.
Young recollects the development of DSM-III.
Traumatic neuroses of war were described since WWI. Main author: KARDINER 1941.
There was no separate category for traumatic neuroses at the time and literature was anarchic. There we lists of
symptoms and lists of diagnostic categories, none matched with the other. Traumatic events were classified
according to their reactions. A standardised psychiatric nosology was completely missing.
DSM-III was invented in 1980= Diagnostic and Statistical Manual of Mental Disorders
It contains200 named mental disorders, which are grouped in categories based on shared features. They argued
that DSM-III was based on features and thus had no theoretical orientation. It was a product of 14 advisory
committees. It limited the real facts of PTSD to formal categories for political reasons. No one wanted to address
the real issues of war traumas.
Young argues that PTSD in clinical practice is coherent and distinctive. He argues that the sense of time that is
now firmly attached to PTSD does not emerge spontaneously from the facts. It is an achievement, a construct of
psychiatric culture and technology.
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WAXLER, Nancy 1977: Is Mental Illness cured in Traditional Societies?
Waxler shows how erratic behaviour is seen once as mental illness and once as deviant behaviour. Suicide
behaviour can be a sign of depression or just a deviant behaviour in stress situation. The interpretation is
culturally different.
Waxler brings up a hypothesis by SIEBEL: Traditional societies produce mental illnesses which are short-lived
and easy to cure. Why?
Siebel says, because traditional societies produce sanctions for deviant behaviour which creates a reintegration of
subgroups as well as of the patient back into society. Acts of treatment create reinforcement. Thus, in traditional
societies there is less need for long-term chronic illness.
Example form Sri Lanka: at times of marriage deviant behaviour may be labelled as mental illness, which at
other times may be ignored. In attaching the label to a family member they set in motion a group treatment that
strengthen inter family or other group connections which is desirable at the time of marriage. After sub-groups
are reintegrated or boundaries re- structured, the illness is no longer needed and disappears quickly when
messages by family members are send to the ‘patient’. And that may be why mental illness is cured in traditional
society.
GEISSLER 1998: Worms are our Life
Geissler analyses emic understandings of worm infestation in Luo in Western Kenya. From a biomedical point of
view worms are seen as a parasitic infections. In Kenya among the Luo, worms are a part of daily life, and are
seen as normal even as life companions or promoters.
Geissler describes an ethnographic study among school children, among 12% are infected with roundworms
(visible in stool), 33% with whipworms ( visible but often remaiin unobserved), 67% with hookworms (causing
blood loss), and 86% have intestinal bilharziasis ( causing bloody diarrhoea and enlarged liver).
In another study 80-100% of kids who were treated were re-infected within a year. Many people live with the
idea: worms are always there.
Warms are known to be harmful to children but not perceived as major health thread because of severe AIDS/TB
epidemic which causes many more deaths.
Both models – traditional and biomedical coexists in the same people’s knowledge and can be employed
alternately by the same people. Still it reflects an epistemological distinction known and practised by the people
themselves.
Traditional Luo model of worms (local term NJOKNI made no differentiation between types of worms) in the
body:
- all people need worms to live
- all food one east is eaten by worms
- worms react to outside influences ( bad food, evil eye, sorcery, spirits, hunger)
- if provoked, worms can scream, or refuse food leading to swollen bellies
- worms can be appeased but not killed by herbal medicines, and without worms one dies.
- Even if biomedical drugs are taken not all worms are killed, because if all are killed the person cannot live
- Worms are necessary to transform the corpse back into soil.
Biomedical model:
- body is an entity and should not contain any other organism.
- Worms are intruders for outside and should be eradicated
- Worms are contained in ‘dirt’ and enter the body along with it.
- Worms are enemies to the organism and destroy its function, take precious fluid – blood
- Worms are linked to decay and disintegrate the body when it is still alive, the later decompose the corpse.
Both models are in people’s mind but expressed according to context.(hospital setting, local talks)
Models reveal concepts of boundaries, purity, contamination. Worm model reflects wider world view of openendedness and inclusion of positive and negative forces into life. Perceptions of worms reveal people’s concepts
of illness and transmission as well as their cosmology. Models vary between adults (use models according to
context), children( mix up both models) and old people (traditional).
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JACKSON 1992: After a while no one believes you
Individually experienced chronic pain that cannot be communicated.
Favret-Saada 1980: Deadly Words
On Witchcraft in France
Grass rots in barn, cows do not calf = signs of witchcraft
Misfortune = accumulation of unlucky events
Hsu’s example of 24 Chinese definitions of piles compared to one biomedical definition ( haemorrhoids)
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