THE QUIET BLACK
LAMB
EPILEPSY IN TRADITIONAL AFRICAN
BELIEFS
BY
DR KATELE KALUMBA
SENIOR RESEARCH FELLOW
DEPARTMENT OF COMMUNITY HEALTH RESEARCH
UNIT, UNIVERSITY OF ZAMBIA
UNZA
Paper presented at the 22nd
Kilimajaro Christian Medical Centre Postgraduate
Seminar, Moshi, Tanzania, May 24-26, 1983
INTRODUCTION
This paper aims at exploring the
relationships between traditional African beliefs about epilepsy and African
theories of disease, health and illness.
The notions underlying these theories are described and their importance
in defining the roles of various actors in the therapeutic system is discussed.
The point of departure is the patient whose affliction society requires
to explain (Lewis, 1975: 129). From the
process of defining the meaning of affliction emerges a socially determined and
culturally specific sick role, whose enactment endorses social norms.
Two examples will serve to
illustrate the relationship between beliefs, sick role and social norms. John M. Janzen (1978) in his study of the
Bakongo of lower Zaire has observed that norms and beliefs concerning illness
and therapy are profoundly coded into the lives of various actors in an illness
episode. And essentially because of this
he observes that:
The ‘sick role’ can be analyzed as a
way of defining and
mobilizing rights and duties within
a community of persons
who take responsibility from the
sufferer and enter into a therapy management group
(Janzen, 1978:7)
The Bakongo ‘therapy management
groups’ described by Janzen are as important to the ‘performance’ of a sick
role as the sufferer himself.
While a patient among the Bakongo
may see the success of this performance as the extent to which he draws social
support in the management of his condition, a Gnau villager in Papua New Guinea
measures success by the extent to which he is to “avoid drawing attention to himself,
project vulnerability and appear wretched” (Lewis, 1975: 140). To the Gnau the
social group is a source of his vulnerability.
The behaviour of the social group (i.e. staying away from him) is an
important part of his sick role performance.
These two examples regarding the
behaviour of the patient in a sick role also draw attention to another dimension
of health, disease and illness. The
Mukongo patient surrenders some of his role performance to the group by
enacting a socially ‘symptomatic sick role’, i.e. his sickness is a revelation
of what is wrong within the social group.
The Gnau patient, on the other hand, struggles to retain control over his
fate by withdrawing from the social group and assuming responsibility for
recovery through the enactment of a socially ‘dejected sick role’. In this latter case, the whole group is the enemy. It seems clear in both cases that issues of
health and illness are interrelated to those of power within the social milieu
of the therapeutic system. It is in such
tension creating mechanisms that a true understanding of the nature of a belief
system may be found.
Gwyn Prins (1979) in his study of
the Lozi of Western Zambia expands on these notions and argues that the internal
logic which informs the various issues surrounding the therapeutic system are
inseparable from the central notions which underlines a society’s beliefs
regarding disease. Both patient and practitioner in a sickness episode should,
according to Patrick Twumasi (1975), share common beliefs and attitudes toward
disease (p.41). A common logic within a
society, therefore, must exist before a medical theory can be built (see also
Evans-Pritchard, 1937; Nurge, 1977).
We are suggesting, therefore, that
in approaching the question of African beliefs towards epilepsy we begin appreciating those central
notions which inform African disease theories.
It is only from this perspective that we will begin to understand how society
explains the epileptic’s affliction,
defines his sick role and prescribes socially acceptable therapeutic practices.
AFRICAN BELIEFS REGARDING EPILEPSY
Cosmopolitan medical thinking on
which health care in African hospitals, urban health centres is based has now
reached a level where epilepsy is seen as a chronic brain syndrome of various
aetiology, characterized by recurrent seizures due to excessive discharges of
cerebral neurons (Dam Kirboe, 1982).
This sudden and sometimes explosive ‘force’ produces varying levels of
changes in consciousness, behaviour, sensation and movement. In its most violent form, known as the ‘grand mal’, there may occur very noticeable spasmic muscular
activities and frothing at the mouth, falling to the ground, rolling of eyes.
The other is petit mal a seizure that consists of a brief loss of
consciousness and not involve any jerking movements or frothing. Within this range, focal type epilepsies occur and may not usually be
recognised as epilepsies by the onlookers.
Most diagnosis in clinical
situations to ascertain types of epilepsy in Africa today relies heavily on
eye-witness accounts in the absence of technologies such as
electro-encephalograms and, given the loss of memory which occurs after a seizure,
the epileptic is thought of as an unreliable
source of information on his affliction.
In grand mal, the experience to the onlooker is often frightening. This experience often distorts the nature of
information that onlookers provide to practitioners.
Defined as a symptom related to the
behaviour of the brain, diagnosis in cosmopolitan medicine involves looking at
a range of factors likely to affect the electrical charges of the brain such as
traumatic brain injuries (TBI), brain turmours, infection, birth defects,
etc. Genetic susceptibility is also
investigated.
Cosmopolitan medicine has not
successfully debunked the myths, even in Western societies, surrounding
epilepsy. This is partly due to the fact
that what can best be hoped for in treatment is to control the occurrence of
epileptic seizure rather than remove the causes. The problems (particularly psychological)
associated with surgical intervention makes the therapeutic goal of control
rather than cure in-evitable.
Myths about epilepsy within
cosmopolitan health-care environments are also perpetuated by the influence of
religious notions -especially within the Judeo-Christian tradition.
Rehabilitation of epileptics in
communities also remains problematic because of various factors which often
include the belief that an epileptic is a vulnerable person who should not be
made to do physically or mentally challenging work. Public education in the identification of
the condition, management of the epileptic and research into the behaviour of
the brain and the human body, and also ways to control seizures and hopefully
treat epilepsy successfully are some of the objectives of cosmopolitan medical
care.
Among the available studies on the
experiences of epileptics in Africa, we would like to single out a few which
seem to have given a sharp focus on the question of beliefs.
John H. Orley’s (1970) account of
beliefs about epilepsy among the Baganda, although dated, stands out very
prominently among such works. A few
sections of his very lucid account give us
a reasonably compact picture of what an epileptic is likely to go
through in the Buganda society.
A central belief which seems to
precipitate social reaction to epilepsy among the Baganda is the idea that it is highly
infectious. Infection is suspected to
occur through the froth or an epileptic’s urine during a fit. Apart from transmitting the illness during
such an occasion, it is also believed that infection can occur at any other
time if one got in contact with an epileptic, particularly through sharing
utensils.
The belief that epilepsy is
infectious leads the Baganda to undertake various measures for preventing the
chances of contamination. Social
isolation is the commonest method - an isolation which seems to even affect
where the epileptic is finally buried - away in the bush rather than in the
homestead as is the custom.
Apart from the idea of contagion, it
is believed that epilepsy can also be caused by witchcraft. Orley does not elaborate on the mechanisms
suspected to be used in witchcraft but suggests that the introduction of
foreign bodies such as a lizard into the brain is one such measure.
The effect of epilepsy on a Muganda,
according to Orley, is known as ‘okwonoooneka, translated as ‘spoiling
of the brain’. Such a fate seen within
the social context of isolation seems to
relegate the epileptic to a state of social underdevelopment. Orley does not discuss sex differentiation in
detail but suggests that epileptic women have a particularly hard time finding
husbands. Epileptic children, on the
other hand, are denied access to such vital social services as schools.
Other, even more dated but
nevertheless important contributions to beliefs about epilepsy are the accounts
given by Aall-jilek (1965) among the Wapogoro of Tanzania and a very brief
account by Giel (1968) in Ethopia. In
both these accounts the notion of contagion and consequent isolation go hand in hand. In their 1970 report, Jilek and Aall-jilek
suggest that epileptics are more stigmatized than lepers because of the belief
that they are demon-ridden and contagious.
Similar beliefs have been reported by Dada & Odeku (1966) in
Nigeria.
Witchcraft, gods or spirits have
been implicated as major causes of epilepsy in most studies. Levy (1970) reports that out of 130 patients
in Semokwe, Zimbabwe, 77 believed their epilepsy to be caused by bewitchment
“either by the spirits of their ancestors or by fairies” (p.298). Among the 77
who cited bewitchment as a cause, 17 attributed this to the action of living
persons. Ten of Levy’s 130 patients cited epilepsy as ‘God’s
illness, and 29 had no idea of causes’.
I would like to observe here that the concept of bewitchment is somewhat
confusing. Witchcraft is not commonly
believed to be caused by spirits.
In a pilot survey of an instrument we are using in our on-going study of
‘Risk-assessment practices and morbidity’ in Zambia, we asked our respondents
whether epilepsy could be caused by spirits.
An analysis of responses shows that among 42 heads of household of
heterogeneous ethnicity (Tambo, Tumbuka, Bemba, Fungwe, Lambya and Namwanga) in
the upper Luangwa Valley in Kapmpumbu, Isoka District, 23 believed that spirits
can cause epilepsy, 17 did not think that spirits can cause epilepsy, one
respondent was not sure and another one’s answer not clear. Further work is indicated by these data to
explore notions of causation.
In his study of Lunda treatment
practices, Victor Turner (1963) suggests that the notion of epilepsy being
contagious and a physical disease is central to Lunda therapy. The treatment of ‘musong’u wachinkonya
among the Lunda focuses on the symptoms and looks for those properties in the
organic material (animal and vegetation) which behave in the same manner as an
epileptic. A similar practice of
harnessing the physical properties of animals, birds and plants and plants in
treating epilepsy in this way is reported by Alan Haworth (1978a) among the Ila
of Southern Zambia.
In his study of attitudes towards
epilesy in Zambia, conducted in the late seventies, Haworth (1978b) interviewed
three groups of people (28 professional workers in the education,
social-control field, 13 traditional healers of various kinds and 17 relatives
of epileptics). His major observation
was that epilepsy is considered by his respondents as a physical disease. Respondents also seemed to be more familiar
with the grand mal and were able to categorize infantile convulsions as falling
within the same genre as epilepsy. A high
percentage of respondents (79%) believed epilepsy to be inherited, i.e. coming
from the influence of the living dead’.
Haworth seems to distinguish this
type of causation from another category he labels ‘ancestral spirit influence’. In this response category 52 percent of respondents did not think that ancestral
spirits could cause epilepsy. In
addition, he observed that 70 per cent of his respondents did not think ‘spirit
possession’ could cause epilepsy. None
of his informants mentioned ‘malignant spirits’ (which may be seen as
equivalent to ‘demons’) as capable of causing epilepsy..
Haworth’s findings on spirits, just
as those on bewitchment, seem to indicate that there is a lot of confusion and
uncertainnity regarding the causes of epilepsy when dealing with an ethnically
diverse culturally differentiated group of respondents. A study of beliefs would only seeem to make sense
within the context of a given cultural or ethnic group, as the studies of the Baganda
and the Wapogoro indicate. For this
reason, having the advantage of being familiar with the language and culture of
the Luapula Bemba (for the purpose of this paper), I inter viewed two elderly
key informants (53 and 65 years respectively, the latter a traditional healer
reputed to specialize in treating epilepsy in his area) in order to explore
beliefs and attitudes related to epilepsy among the Bwile* (The Bwiles are a
linguistic sub-group of the Bemba speaking people around the northern tip of Lake
Mweru in Zambia and Zaire /Congo).
Because of the time constraint and circumstance surrounding the visit to
the area (a funeral of a relative), these efforts were anything but
thorough. However, the group setting
within which these two informants volunteered their responses and the support
this group of male funeral attendants gave to them formed a significant check
on their observations.
Among the Bwile of Northern Zambia
epilepsy is seen as a progressive disease beginning with infantile convulsions (musamfu). When a Bwile child is born, the nachimbusa
(tranditional midwife) enacts a ritual called kusamba (washing). The baby is put in a certain position and
given his first bath in water mixed with herbal medicines. Some of this water, a drop or so, is given to
the baby to drink. The new mother is
advised to bath the baby in a herbal bath periodically for the first
month. These measures are undertaken to
prevent ukusamfula (infantile convulsions). Should imisamfu occur despite
precautions, healers usually investigate how this ritual was conducted and who
was present. They also investigate how
the baby’s umbilical cord dropped and how it was disposed of. These are known as points at which vital
forces of the child could be manipulated
either by spirits or witchcraft.
For instance, if the umbilical cord touches a boy’s genitals when
dropping, it is believed that impotence occurs in adulthood. The objective of investigation is, in the
case of musamfu, to find a possible procedural fault or presence of an
evil person. If a procedural fault likely to upset spirit is
found, a ritual is enacted to correct this before treatment can begin. As in the case of the Lunda, treatment is
symptomatic and is followed by food taboos and other taboos such as not
going to rivers alone, staring in a fire, cutting across a road crossing.
Such restrictions in adults, though preventive, seem to effectively bar the
epileptic from access to social development re-sources and render him dependent
and therefore powerless in the social group.
When musamfu does not respond
to treatment, the Bwile (who speak a Bemba dialect) conclude that it is
chifulubi (akakoshi among the Bemba). Chifulubi is also found to
occur in birds such as chickens, some animals or even fish, and these too are
believed to be carriers. The Bemba term,
akakoshi, refers to a bird in the falcon family Peregrine falcon whose
speed in catching its prey is used to describe the sudden ways of an epileptic
seizure. The bird is a powerful chishimba
(agent) in medicines used for the treatment of chifulubi among the Bwile
and other Bemba groups. Children are
normally prohibited to stare at the falcon when it is flying, especially when
it is ‘floating still’ in the sky. It is
believed that doing so could lead to an epileptic attack at some point if the
person is ‘vulnerable’ i.e. Susceptible
to spirit influence.
Bwile treatment of epilepsy seems to
an outsider to be only in the many restrictions imposed on the epileptic. Common lore among the Bwile is that an
epileptic is never really cured. The
illness is contained only by the observance of taboos. Although these taboos may appear to be
irrational, they do ‘make sense’ given the cultural belief system and, in fact,
have some scientific basis (e.g preventing epileptic seizures precipitated by
food, colour, loud sounds, etc. and
safeguarding a sufferer from having seizures while alone). Although some taboos pass as part of the
therapy, one can deduce that they are meant to prevent others from being
contaminated. For example, an
epileptic’s food has to be prepared from special pots reserved for him. The rationale is that eating from any other
pot might expose him to eating from dishes ‘contaminated’ by chicken or other
foods. As a result, the epileptic -
especially one undergoing treatment - is effectively isolated.
There is wide variation in the
patterns of care of an epileptic among the Bwile. The epileptic’s family status and that of his
traditional therapist seem important mediators in enhancing his social acceptance in the community. Epileptics from strong families or whose therapists
happen to be prominent (e.g. headmen) may have community support mobilized on
their behalf and may suffer less marginalization. This review of traditional African beliefs
about epilepsy would seem to call into question the notion of a communal,
all-caring African society. How can
societies which are ‘man-centred’ ostracize their own sick? An explanation of the paradox may be found in
notions underlying African medical cosmology.
UNDERLYING NOTIONS IN AFRICAN
MEDICAL COSMOLOGY
Each society espouses some kind of
theory about the phenomena of disease, health and illness and of systems of
manipulation to overcome disease and enhance health. Whether these are based on a magico-religious
world view or on a scientific one, these theories are essential elements in
understanding public attitudes towards any given illness. In simplified terms, a theory can be defined
as a general principle formulated to explain a group of related phenomena
(Chaplin, 1975). But as I have stated, this is a very simplified definition.
More complex formulation of the nature of scientific thinking has been elucidated
by R Harre’. He argues that theories can be “seen as essentially concerned with
the mechanisms of nature, and only derivatively with the patterns of phenomena”
(p34). He proceeds to argue that “Theories are seen as solutions to a perculiar
style of problem: namely, ‘why is it that the patterns of phenomena are the way
they are.?’ ... A Theory answers this question by supplying an account of the
constitution and behaviour of those things whose interactions with each other
are responsible for the manifested patterns of behaviour.” (p35) It approaches
this work bycoceiving of a model for the presently unknown mechanisms of
nature. How such models are constructed is itself an epistemological question.
An African disease or medical theory thus
would consist not only of a representation of the structures of disease, health
and illness, but of how these structures behave and of what they are. Behaviour of disease is, of course, related
to the properties of its structure.
These are, for example, the nature of the parasite, the host and the
overall ecosystem with which affliction
occurs. It would help fill up gaps in a society’s knowledge of the structures
and their constitutions of ill-health. As Harre’ points out, it will involve a
construction of a paramorph and the hypothesis of the paramorph as an
hypothetical mechanism, a relation of analogy such the behaviour of a bird and
the manifestation of an epileptic attack.
An African disease theory of
epilepsy would thus include: the description of the notions which underly the
definition of what constitutes epilepsy; who it affects and how; the afflicted
and their environment’s reaction to the affliction; what informs this reaction,
i.e. the social meaning of affliction and how these meanings are rationalized
within the broader cultural context. It
might also include: systems of manipulation of affliction, the notions which
underly both these practices and their
goals; the consequences or meaning of success or failure of attainment of
therapeutic goal of the entire milieu of the therapeutic system.
In order to understand further
African ideas relating to epilepsy it is helpful to review the general notions
of African cosmology.
Attempts to characterize traditional
subsaharan African ontologies present a world view which is highly
anthropocentric, holding Man as a reflection of the complexity of the universe
(Mbiti, 1969; Soyinka, 1976; Tempels,
1959). Within this cosmic structure, the
social, physical and spiritual worlds are inextricably intertwined in a system
which is highly interdependent and whose success is reflected in the fate of
the individual.
In this African world view the
individual’s survival is only meanigful within the context of the survival of
the entire social group. His fate is
tied to the fate of the community in a cosmic structure. Soyinka (1976) refers
to this as the “metaphysics of the irreducible”. Within the fundamental matrix of social,
physical and spiritual worlds, “mores, personal relationships and even communal
economics are formulated and reviewed” (Soyinka, 1976: 53). Thus transcendental existence in a universe
of cosmic harmony structured to guarantee the continuity of the species constitutes
the moral order of the African world. “A breakdown in (this) moral order
implies in the African world view a rapture in the body of Nature just like the
physical malfunction of one man” (p.52)
Contained within this world view are
notions of medical cosmology which, according to Prins (1979), consist of four
categories. The first is the notion of
‘circular passage of disease’ in which a fixed number of diseases (whose limits
have been established by the High God Nyambe) circulate within society. If by any chance they are cast from one
person they inevitably go and look for another victim - be it animal or
man. The second notion is that of a
‘dual’ aetiology of disease . A person
is afflicted either because of God or because of man. Affliction in the first case would come only
when a person is out of step with the physical world - albeit God’s world. It is assumed that imbalance occurs when the
negative forces potentially inherent in the basic elements of nature - fire, air,
water, earth - and its organic elements are tampered with. When properly harnessed, these same
elements take on a therapeutic value.
Disease of man involves vulnerability as a result of social disruption
as when social norms are broken. It also
involves witchcraft which is the conscious manipulation of the apparently
normal or positive ‘forces’ into ‘dark power’.
The third notion which is embedded in the first two central notions is
that of ‘acute interaction’ between the social and physical elements. Perhaps a similar notion in cosmopolitan
medical thinking would be the systems model strongly advocated by Minuchin and
his associates (1978) in the treatment of Anorexia nervosa
(pp.20-21). In this case (and they argue
also in the case of diabetes) an individual’s social context is significantly
related to the behaviour of an affliction.
It seems to violate common sense
that the contraction of a
child’s bronchiole is regulated by
sequences of transaction
between family members. Or that a diabetic patient’s
Ketoacidosis is affected by the way
his parents request his
allegiance. Or that an anorectic’s not eating is
controlled by the
way the anorectic and her parents
transact the issues of control.
Minuchin and his associates’
findings demonstrate that family interactional patterns affect these affliction
conditions. Other studies have pointed
to the relationship between psycho-social factors and physical morbidity, e.g
in hypertension and ischmic heart disease (Groen et al. 1968; Medalie et al., 1982). African medical
cosmology has always assumed this interaction between the psycho-social and the
physical (Turner, 1953; Janzen, 1978; Ngubane, 1977; Twumasi, 1975; Serpell et
al., 1979).
The fourth notion, according to
Prins, is that of the ‘deliberate inversion of norms’ to activate negative
powers capable of causing disease, e.g. witchcraft - man deliberately
manipulating natural forces. Running
through all these is a related notion of ‘balance’ or ‘harmony’ which defines
normality. The ‘acute interaction’
between and within the physical, social and cosmological spheres achieves a
certain homeostasis which defines normality.
When this is disrupted, negative consequences are likely to follow
BELIEFS AS SOCIAL DEFENSES FOR GROUP
SURVIVAL
Traditional beliefs towards
epilepsy, when put into the context of African medical cosmology, would point
to possible explanations regarding why people react to epilepsy with fear and
ostracism.
One point of entry in the search for
linkages between beliefs and the broader notions underlying a people’s world
view and medical theory is to begin with the behaviour or reactions of health
practitioners. It is this group which
fuels society with explanations of disease phenomena. From Orley’s (1970) account it is
suggested that the treatment of epilepsy may be frustrating for traditional
healers as well. There seems to be a
tendency by healers to give up on the epileptic as an incurable among the
Baganda:
If a patient has been burnt from
falling in a fire this is acknowledged
as a sign that the patient cannot be cured or,
as some say, it is an
excuse that some doctors use when they have
failed. (Orley, 1970;42)
When the efficacy of a profession’s
techniques are brought into question we know too well even in cosmopolitan
medicine how quickly myths are formulated to fill in the gaps of knowledge
which this failure implies. The
desperation for a ‘total cure’ is normally unmasked. Bryant’s (1966) account of
the treatment of epilepsy among the Zulu of South Africa gives us an example do
this total approach and points to possible motives:
In the case of epilepsy the patient
was ordered to supplement
the medical treatment by plunging,
at a certain hour, into a particular
pool - everywhere known to be especially
infested with crocodiles and
reputedly also with pythons in one of the rivers in further Zululand.
The object of this, it seems to me, could have nothing other than to
cause a vitalizing shock to the brain and
nerves
(Bryant, 1966:70)
Shock it may probably be but is it
possible that this could as well have been an attempt to get rid of the
patient? In this case it would be
helpful if we knew the cure rate of epileptics in Zululand. Are there many survivors from these
rivers? What could be behind this
apparent desire to rid society of the epileptic? The critical literary works of Wole Soyinka
(1976) may be particularly useful here in taking us back to the core notions of
African cosmology.
In falling back on these notions, we
advance the argument that beliefs such as those on epilepsy constitute social
defences in situations where the social group is seen as vulnerable and
requiring internal social corrective measure.
African medicine treats epilepsy as a physical disease and is
distinguished from such things as spirit possession (Haworth, 1978c). And, according to Prins (1979), physical
diseases are primarily seen as diseases of God (of the physical world). In this case, therefore, an epileptic’s fate
has to be settled not with or by the social group but between him and his
God. Somehow, the epileptic is seen as
the victim of the ‘negative ‘ powers of the physical world.
These negative powers inherent in
the physical world could be used to explain the rationale behind the notion of
a ‘circular passage of disease’, arising from a central feature of African
cosmology. The African gods have the
human attribute of fallibility and are therefore capable of causing unexplainable
calamities (see Soyinka, 1976: 18; Mbiti, 1969:37). However, in order for these powers to be
unleashed, the victim must be one who is ‘unprotected’. In a situation where disease ‘roam the
earth’, a society would soon become anxiety-ridden if there was no form of
protection. Therefore, many societies
use the notion of vulnerability in a way that explains why only certain groups
have epileptic fits. Vulnerability could
be a consequence of various factors including neglect of a birth ritual, break
of taboo (Haworth, 1978a; Mbiti, 1969), or may be due to the unusual behaviour
of the deities.* (As in the case The “Imprisonment of Obatala, by Obutunde
Ijimere” the Gods drink too much wine and create an albino). In these cases, treatment takes two major
forms, building one’s protection and, by so doing, getting rid of the ‘bad omen
‘ through scape-goating. The scapegoat
could either be a human being, an animal or an inanimate object (Twumasi, 1975:
35). It is the idea of scapegoating that
is usually behind the treatment of epilepsy described by Haworth:
in fact, very frequently the
(epileptic) patient is required to go to a
place for rubbish or into the bush and after
under going a process
of discharging the illness is
required to depart from that place without
looking back.
While this might seem to imply some form of spirit
which may
re-enter the patient this is by no means clear. Whatever
the ‘essence’ of epilepsy is, it is seen
as something highly undesirable.
(Haworth, 1978c:9)
It is the ‘deliberate’ creation of
danger for the community through scape-goating, i.e. getting well only at great
risk to the rest of the community, which alters the individual’s relationship
to his community and justifies social isolation. It implies the ‘inversion of norms’ and may
therefore be perceived in a similar context as witchcraft. The epileptic is a danger to other members ‘kukosa’
(invulnerability-which is gained after the birth ritual or through other
protective charms). The survival of the
rest of the group depends on the sick role behaviour of the epileptic.
The epileptic’s affliction, unlike
the ‘spiritually possesseds’, is believed to have no benefit to his
community. In the case of spirit
possession, the community’s sympathy is with the protagonist, as Soyinka
observes:
The real unvoiced fear is: will the
protagonist survive confrontation
with forces that exist in that dangerous area
of transformation?
Entering that micro-cosmos involves a loss of
individuation, a
self-submergence into universal essence. It is an act undertaken
on behalf of the community and the welfare of the protagonist
is
inseparable from that of the total community.
(Soyinka, 1979;42)
In Soyinka’s view outcome of the
tragedy of communal ritual drama is a cathartic process in which the
protagonist, through physical and symbolic means, reflects the “archetypal
struggle of the mortal being and exterior forces” (p.43). In this role, he symptomises the needs of the
community for repair. He unleashes
strength for the community hence their full participation in a supportive role.
The fate of the epileptic from the
exterior forces are not premised around an internal group disharmony. His treatment does not unleash strength for
the community but vulnerability. This
reaction is also found when a family has had a stilibirth. The disposal of a stillbirth among the Bwile,
for instance, is at a road crossing and the first person to pass the crossing (ukuciluka)
) is said to ‘carry the stillbirth’ (ukusenda
akapopo). People, including
children, are supposed to avoid eating from or getting in contact with a
household where there was a stillbirth
until the community is sure that the bad omen which caused it has been
made to ‘sleep’(ukulalika).
Unlike the epileptic, this isolation
is temporary since the risks to the community are only possible until the family is
cleansed. Epileptics are not fully cured
and therefore are a continued communal risk.
A second perspective on the reasons
for ostracizing epileptics may be gained by the study of one dimension of their
sick role. The epileptic is in a sense a
perpetual ‘patient’ whose treatment involves exclusion from contact with the
basic elements of the physical and social words: fire places, water, alcohol, communal eating
places, going alone into the bush, etc.
Haworth (1978a) notes:
As with many remedies , the
treatment is believed to be effective
within a short period , the disease
being cured. However, a curious
ambivalence of belief appears here,
for often the patient is told to
avoid certain food by way of
prophylaxis and is often advised
to avoid dangerous situations such
as sitting close to a fire of
crossing a river alone. (Haworth, 1978a: 4)
The epileptic, it seems, is believed
to symbolize the negation of the communal ideal image: ‘If you cannot do all
the things which defines manhood or womanhood (cooking, fishing, hunting, etc.)
in an African society, the strain you are likely to exert on the community may
be perceived as unbearable. Moreover,
chronic disabling illnesses are not well tolerated among many of our societies.
Chuke & Miras (1977) have given
an account of some of the effects of these beliefs on the performance of
cosmopolitan medicine in the care of an epileptic. The greatest threat to the proper management
of epilepsy is found in the collision regarding the explanations offered by the
two systems, traditional and scientific.
The confrontation is, according to Chuke and Miras, a frustrating
experience’. Patients, it seems, give
more weight to the efficacy of traditional health care than to cosmopolitan
medicine. The former is liberal about
its promises of success. Besides, the
onus of success of therapy depends more on the individual patient than the
therapist. If an attack occurs, it could
easily be found that one of the many taboos was broken. In addition, Chuke & Miras observe that:
The very chronicity and
unpredictable nature of epilepsy sometimes makes
the patient doubtful of the efficacy
of modern medicine
(Chuke & Mira,
1977:69)
Among those discharged and required
to attend as outpatients at The University Teaching Hospital in Lusaka, Chuke
& Miras report that 54.2 per cent failed to attend. Finally they note that, because the disease
is stigmatized, many patients deny that they suffer from epileptic fits.
However, this tendency by epileptics
to deny affliction seems to be countered by another tendency by the public to exaggerate or
misdiagnose epilepsy. Serpell &
Nabuzoka (pers. Communication) report
that in a house-to-house survey of all children aged 3-9 years in a section of
Vulamukoko Ward in Eastern Province, 77 children (under 7 years of age: 39
males, 29 females; over 7:5 males and 4 females) were reported by their mothers
or caretakers as having fits (all ndi kunyu matenda olingana ndi kunyu- ‘ the
child has epileptic fits or an illness like fits’ - (in chi-Chewa]); 63 of
these were later examined by medical practitioners following a series of
questions. Among these, only 6 (11%)
were found to show signs consistent with a diagnosis of epilepsy. This finding suggests that careful
examination is absolutely essential when presented with a case of
epilepsy. The consequences of such a
misdiagnosis by parents could, as indicated, have very serious social
consequences.
CONSIDERING POSSIBLE INTERVENTIONS
Before proceeding to a discussion of
some possible areas of intervention in dealing with these beliefs , let us
digress a bit and add another perspective to our observations. Our aim at this point has been to show the
range of human possibilities when faced with disease. Most of us who have been exposed to the
teachings of cosmopolitan medical schools and their subsidiaries may not be
impressed by the theory of “subluxations’ believed by some chiropractors to be
displaced bones which cause ‘pinched nerves’.
This condition is used by chiropratice to explain the many causes of
most of what in medical science may be treated as difficult diseases to cure:
arthiritis, asthma, etc. According to a
manual issued by the American Chiropractice Association, subluxations interfere
with spinal functions and therefore are at the centre of most diseases. Chiropractice is, of course, a multi-million
dollar industry in America. Moreover,
the patient s of chiropractors include people from all walks of life and levels
of education. It is acknowledged that
chiropractors working in conjunction with medical doctors can provide a good
service in dealing with muscular conditions.
But the strength of chiropractice lies in its claim to deal with those
conditions that medical science cannot ‘cure’.
While the scientific basis of ‘subluxations’ has been disputed by medical
scientists, the status of chiropractice is nevertheless formidable. The price patients pay is certainly
sufficient to sustain chiropractice as a money-making profession.
The status of chiropractice
illustrates the point that when the need for a lasting cure is high, people
will search for alternatives even in the most unlikely places. The wide range of medical theories formulated
in many societies are an indication for this human potential to search for health.
The challenge, therefore, is for us to restrain ourselves from
exercising one of our most destructive tendencies in thinking, i.e. the
tendency to be reductive and undermining - a
practice perhaps inherited from the intolerance of religion rather than
from science.
The beliefs we have discussed above
come from deep-rooted foundations in African medical thinking. We cannot do justice to them by packaging
them into a few capsules labelled ‘primitive health beliefs to be disposed of’;
African medical cosmology is about the totality of African life - not simply
about health. The interdependence of
ideas in African thought - systems call for considerable attention in defining
actions for intervention to deal with public attitudes. This is not to advocate on behalf of a
tender, fragile Africa. It is to
challenge our resources to respond to the complex rather than the fragile. Traditional beliefs about diseases offer
logical explanations for what local people perceive to be real threats to the
survival of their community.
From a close reading of various
beliefs about epilepsy we find that they address a range of arenas. Primary among these is the religious
arena. We have explained that beliefs as
religious notions, are related to the African world view. From this angle we know that science is
seldom an effective means to combat religious ‘dogma’. Indeed, can explanations such as ‘electrical
discharges’ from knocked-out brains or, as suggested in one case, ‘the entire
sequence of eating a meal’ (Cirignotta et al., 1977 offer comfort to an
epileptic or his family? It is from this perspective that we find justification
for some of Orley’s (1970) techniques, unscientific as they may sound. Explaining to a Muganda that it is his skull,
not his brain, which is being affected by ‘spoiling’ is not compromising truth,
it is creating ‘safe’ mythology until the real ‘cures’ are found.
A successful ‘positive mythologization’
of epilepsy would need to have as a prerequisite an intimate understanding of
the semantic and religious origins of current beliefs. Orley writes:
If one has some idea of the beliefs
about an illness it is possible at
times to modify them somewhat and to create
new beliefs that may
be beneficial to the patient. This is obviously a complex matter..
(Orley, 1970: 52)
This effect would bring research
efforts from purely physical concerns to psychological and social factors in
epilepsy.
Robert Serpell (1980), in his
discussion of psycho-social factors in health recording, points to the role
these factors play in influencing individual and group reactions to illness, to
the condition of being sick, and to their role in influencing post-treatment
social behaviour. “Each form of
treatment, in its turn, is socially structured and carries implications for the
future social behaviour of the treated individual” (p. 24).
This is an arena for new disease
mythologies. For instance, instead of the picture of the epileptic as
demon-ridden and a defeated outcast, we may project the epileptic as a
struggling survivor calling for public help.
Assuming that fear of contamination is at the base of these social reaction (which fear has been given a
religious standing) inducing public guilt may well be carthatic. In this context, enlisting traditional
healers in disseminating the new ‘truths’ may be useful.
Other related interventions arising
out of current beliefs are suggested by Orley (1970) and Haworth (1978a). The idea of prevention is very prominent in
these beliefs. Orley suggests using
these notions to alleviate the anxiety of relatives. Moreover, Haworth suggests the use of the
notion of prevention in enlisting traditional healers in cosmopolitan medical
care of epilepsy. He writes:
The ng’anga appreciates that certain
medicines may have a powerful effect and his knowledge of the concept of
prophylaxis may make him receptive to prophylactic medication...He could well
be a person who would cooperate in ensuring that patients with epilepsy
continue their dosage (Hawarth, 1978b: 24)
Matovu (1974) has reported that
there is considerable success in the use of public educational strategies such
as lectures, discussions and written material in influencing public attitudes
towards epilepsy. Changing public
attitudes is an area where the humbly-educated political party cadres and
church deacons are more at home than the lay public. It is easier for the medical establishment to
focus on influencing these institutions and provide them with the basic
‘scientific’ material than to tackle public attitudes directly.
Lastly, there is an even more
difficult task: to bring the African epileptic out of the ‘closet’. A parallel example here can be drawn from
alcoholics who are very good advocates of their cause. We all seem, in the case of the epileptic, to
be appropriating his reflective capacities.
The epileptic is not having fits 24 hours a day. We need to explore ways to support those
persons who are undergoing successful treatment to begin to confront public
attitudes-after all, they are the victims of a society’s need to protect itself
and therefore the quiet ‘black lambs’.
An extension of this idea of ‘grass-root
communicators’ is the use of the
fast-developing service of community health workers (CHWs). They have been many reasons advanced
regarding the value of CHWs in the delivery of health services. One of these is their position at the
interface between traditional beliefs and their ability to acquire the basic
knowledge of medical science. The
success of CHWs is perhaps enhanced in part if they are able to operate within
a wider community-based programme. Serpell (1982) has argued for the role of
para-professionals in community based rehabilitation (CBR) programmes for
mentally handicapped children. A
similar idea aimed at raising community consciousness to the needs of
epileptics could prove useful .
I would like to emphasize that all
these posibilities should be viewed in the context of the complex nature of the
belief systems which underlie public attitudes.
As Kalumba et al. (1982) suggest “ in all change efforts at the
community level, it is the political will of advocates of change rather than
merely the dissemination of hard facts which, in the long run, is crucial to
success”,
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ACKNOWLEDGEMENTS
I would like to thank my colleagues
of the Comunity Health Research Unit,
Drs. ‘P.J.’ Freund and our Director, Professor
R. Serpell for the
encouragement they gave me, and the comments
they made on the
draft during the course of preparing
this paper.
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