Thursday, October 3, 2013
THE QUIET BLACK LAMB
EPILEPSY IN TRADITIONAL AFRICAN
DR KATELE KALUMBA
SENIOR RESEARCH FELLOW
DEPARTMENT OF COMMUNITY HEALTH RESEARCH
UNIT, UNIVERSITY OF ZAMBIA
Paper presented at the 22nd Kilimajaro Christian Medical Centre Postgraduate Seminar, Moshi, Tanzania, May 24-26, 1983
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
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
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.
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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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.