recherches anthropologiques et géographiques sur l'épidémie à VIH: théories et débats

Symposium in Pondicherry, French Institute of Pondicherry, 1997 in Frédéric BOURDIER (Ed.) Of Social Research and Action. Contribution Of Non Governmental Organizations and Social Scientists in the Fight against HIV/AIDS

Epidemic in India, ANRS/IFP/SSD, All India Press: 147-184

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Anthropological and geographical research on hiv/aids:

some theories, debates, field experiences and issues

in Sub-Saharan Africa, South-East Asia and India

Frédéric Bourdier

Paper published in Frédéric Bourdier (ed) proceedings of the seminar held in Pondicherry on 7-8-9 November 1997,

"NGOs Involvement in HIV/AIDS prevention : Ethical, Epidemiological, Social and Psychosocial Dimensions

The present article wishes to provide an illustrative selection of research orientations in southern

developing countries, along with brief comments and examples. Particular attention will be devoted to those

implemented in India. However, due to the "oldest" presence of the epidemic in Africa and South-East Asian

countries like Thailand, and by extension, a maturation and a diversification of research (in terms of

methodology, concept, experience, evaluation and critical assessment), additional studies in other

geographical contexts will be examined. Last but not least, such a comparison will enable us to put in

perspective the prevailing situation in India.

Confrontations

Since the last decade, there has been a growing involvement of the social sciences in the field of

HIV/AIDS. Whether this be taken as an opportunity, or as the reflection of an urgent need, will not be

discussed here. Rather than entering this polemic, it would be preferable to look into the distinct research

orientations and see what they suggest for the improvement of the quality of prevention dissemination.

Social sciences have shown that they can contribute usefully to the fight against the epidemic. Obviously,

they do not always guarantee success, like a doctor who is never sure of the outcome of the treatment he

provides to his clients. In fact, their purpose is not to prove their "efficacy" or "efficiency", but to assess their

capacity to provide a clear picture of the social reality. In the first editorial of "African society & aids

network", Claude Raynaut (1994) recalls that social sciences can help to understand the dynamics that

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underlie the advance of the disease and the process which tends to accentuate or to moderate its impact.

Anthropology and geography - we could have added demography, economy and others, but, for reason of

space, we concentrate primarily on the two selected fields - assume significant place among the sciences

concerned with the epidemic.

Of the meaning of social

Questions regarding the distribution and integration of social and spatial determinants are familiar to the

geographer, while the sociocultural dimensions of human relationships are one of the favoured areas of the

anthropologist. In contrast with geography, anthropology is concerned with more qualitative observations

(but does not exclude quantitative investigations). Different approaches, either contradictory or

complementary, have been suggested in an attempt to understand the facts and figures of various societies

in relation to the epidemic. A consensus does not appear, and disparate studies reflect different theories,

which have their own methods and concepts.

Anthropology focuses its attention on society and culture. It concentrates on social representations and

behaviour, considering the gap between what people say and what they do. Geography establishes the

relations between human beings and their natural, social, economic and demographic environment. But

what does an anthropologist mean by social and culture? What does a geographer signify by space when he

is willing to embrace the spatial dynamics of the epidemic? Before undertaking a critical review of some

research in both disciplines, there is a need to clarify their mutual objects which have, as we will show, some

common and complementary preoccupations as well as distinct specificities.

First, from an anthropological point of view, society has to be analysed in its totality, in a holistic way,

and not by isolating here and there some elements of the social system. The knowledge of the collective

framework in which the life of the persons are taking roots is the unavoidable prerequisite for a further

understanding centred on the individual. Second, social practices are changing, transforming, and are not

uniform. People are able to adopt strategies in order to modify the rules dictated by society to their own

advantages. Hence, practices result from a compromise between these individual or collective strategies and

the social norms. This rectification of the anthropological perspective clearly mentioned by certain authors

(Fassin, 1996, Raynaut, 1996) implies a different approach to the epidemic from the one guided by "common

sense", usually adopted by health administrators and many social workers and activists who restrict their

investigation on an individual mechanical and behavioural approach. On the basis of this simplistic idea, it

would suffice to convince individuals to modify their habits, their behaviour and sexual practices so as to

curb the advance of the epidemic. This would be forgetting that these practices do not proceed only from

rational decisions or individual choices, but rather are among more global phenomena of social

reproduction in which sexual attitudes and behaviour are both the result of a process of socialisation which



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can begin during childhood, and of a constant process of negotiation between the social actors and their

social environment.

It is, therefore, insufficient to try to change only the personal habits. Individuals live in society and their

attitudes and behaviour are conditioned by their social milieu. Keeping this in mind, the first imperative is

to know to which extent prevention measures can act on the general functioning of the social system, which

in turn will orient and influence human behaviour. But if individual choice plays a part, there is also the role

of external pressure. Social conduct is not the direct reflection of individual voluntarily expression.

Individuals are exposed to various contingencies which limit their decision-making power. Material,

economic and social constraints curb initial intentions and modify the effective behaviour of the people, of a

particular group. In India, for instance, when we look into the advance of the epidemic and the multifarious

prevention strategies implemented in order to counteract it, little will be achieved in the long term if power

relationship between men and women does not show any drastic improvement in favour of the latter.

Gender inequality is at the basis of the development of the disease. In the same manner, social

discrimination through the caste system and inter-class alienation create situations of acute vulnerability

which systematically turn to the disadvantage of the deprived population. As long as an important portion

of society is not in a position to defend its human rights, to restore its dignity, as long as the women do not

have control over their own sexuality, as long as various forms of sexual abuse, reinforced by a guarantee of

impunity (from landlords to coolies, from house owners to servants, etc), any individual and awareness

prevention effort will be biased.

The geographical perspective, when related to the epidemic, becomes a more « human geography ».

Individuals who have been traditionally perceived as vectors rather than actors -which has been a typical

criticism of the geography of health - are considered in their social and psychological dimensions. A

geographical analysis can comprehend the disease on a large scale and in a global perspective. The notions

of space and territory play a central role in the interpretation of the geographical differentiation of the

epidemic. Which peak the epidemic has reached in a particular place and why A collection of comparative

data is needed but in connection with the demographic, social and economic and cultural environment.

Questions such as attraction poles where seroprevalence is higher, the various forces and forms of

development, furnish other keys to our understanding of the spatial and social dynamics of the pandemic.

We have no intention in this paper of giving an exhaustive synopsis of the research situation concerning

aids, or the utilisation of this research by governments, decision-makers or people actively involved. It

would be an enormous task requiring the compilation of thousands of references and critical reviews.

Another dimension which we shall not take up in the following pages, but which constitutes a sensitive

topic in places like France, is the relevance of possible direct applications of the social sciences. For instance

does anthropology have any applications in the field of health? Is there an applied medical anthropology,

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and under which conditions is it justified? Although this question does not seem to be a matter of discussion

in North America, but rather a natural extension of science, long debates are nevertheless taking place,

sometimes passionately and without any hope of progress, between scholars involved either in academic

research or applied research, occasionally in a fruitful way as in the case of the AMADES (applied medical

anthropology in the development of health) association meetings in France.

Critical assessment of action projects by researchers

If the social sciences have already for a long time (Bastide, 1977) wanted to provide development projects

with elements of critical assessment, principles for evaluation, it is because their knowledge legitimizes them

to criticise the manner in which those who are responsible for the development perceive the social reality

and intend to make changes in it. However, causes for reflection very soon arose on the basis of concrete

experiences in development projects which had been borated, or at least which had not developed "as

foreseen". In summation, the following main problems related to development and preventive actions are

frequently identified:

First, they are directed to individuals and not to communities. Individual prevention is necessary, but if

social prevention is totally disregarded, as is the case in many intervention projects (especially those

concentrating on mass awareness camps), it remains insufficient and unrealistic.

Second, they aim at motivating people to change their behaviour, mostly by repressive messages, while

populations evaluate their benefit in a global perspective. If the individuals and the community has doubts

as to the advantage for them, a lack of commitment will threaten the issue. It is possible to go further :

frequently when social inquiries are conducted in India, people reply « what will be the benefit for us ? ».

This does not mean that the person basically expects something, but he thinks, judiciously, that the

development promoters are in fact the first beneficiaries of the change decided by outsiders, who will take

advantage of the situation (which is in a sense not entirely wrong).

Third, there is, most of the time, no proper order. Worse, contradictions are a part of the development

activities. They are subject to an administrative hierarchy, from top to bottom. In spite of dedicated attempts,

like the one from by the State Aids Cell Control Society in Chennai, to act as an agent providing information

from NGOs to the government, national policy does not seem to be in a position to re-evaluate its Aids

policy in the light of the experiences of the NGOs.

Fourth, there is also a lack mutual understanding between populations and developers. Under the

pretext of the ignorance, if not the potential inability of a part of the population to understand clearly,

developers do not feel obliged to explain what they say. That is to forget that people expect proper

explanations, and that they are not ready to accept every statement without justification. For instance in



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Tamil Nadu, many people from the lower economic strata do not understand why Aids is a particularly

deadly disease which today’s captures all the attention, while more people died from diarrhoea, cholera

and malaria.

Fifth, some model projects are put forward by United Nations organisations or any foreign agencies, but

there is little attempt to evaluate conditions for the replication of a « successful » project. I would rather

argue that replication is mostly perceived in its unilateral dimension, that is, in its implementation process.

But any achievement results from a combination of the people’s building-capacity and the relevance of the

project, the consequence of a trustworthy negotiation. But a group of people, a community, does not have

the same sociocultural pattern from one place to another. The community may not be in a position to

sustain, politically and economically, the required conditions to make to make the change possible and

thinkable.

Sixth, it is remarkable to realise that the orientation of many NGOs is based on western thought. Two

reasons can justify this orientation: either they are financially controlled by an external source of funding,

and therefore not free do undertake what they want; or they are attracted by foreign models. In one way or

another, we may wonder whether some NGOs are in a process of « self structural adjustment ».

This criticism is general and does not refer to any particular NGO. It could have been addressed to

government institutions also. These failings, which are to be found to a varying degree in every

organisation, are often linked with a previous lack of knowledge of the social milieu in which the

organisations intend to establish their project. To want to modify th situation, to become involved in a

process of social change, is matter for competencies which are not necessarily the same as those implied in

the understanding of the social forces at work in the practices of daily life. And it is precisely with this last

point that social sciences are concerned. As Jean Benoist remarks (1996), the purpose of the social sciences is

not to change the decision related to prevention, but to change the way of looking into the problems of those

who are making the decisions.

Main research orientations

For the sake of clarity, the different approaches are presented separately. It goes without saying that this

separation is artificial and does not correspond to reality, inasmuch as numerous studies associate currently

or successively orientations which they view as complementary.

Models and dynamics of diffusion

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A first generation of geographical research has established close links with epidemiology (Brown, 1994).

The aim is to map the magnitude of the disease and to provide a synthetic cartographic picture of the

situation and to correlate the level of incidence and prevalence with the socio-economic, demographic data

available for the regions and countries under study (Doumenge et al., 1992). These studies constitute a

preliminary step to a bird’s eye view of the general extension of the epidemic (Rémy, 1991), including

variations between urban and rural areas (Buve et al., 1995). Epidemiological data available from various

countries rely on unequal sources (World Health Organization, 1994) which preclude a reliable comparison.

Even if extrapolated by estimates (Mertens et Al, 1994), these descriptions must be reinforced by more

extensive analyses. Some studies in Africa have also evaluated the evolution of mortality due to some other

diseases like tuberculosis, diarrhoea in urban hospitals and have tried to correlate this "excess of mortality"

with potential deaths due to the virus (Garenne et al., 1995).

A direct extension of this mapping is the research on the evolution, the direction and the socio-spatial

dynamic of the epidemic in a comparative perspective. Research has been conducted not only at the macro

level, but on the micro level, whenever enough reliable information, supported by official administrative

procedures, could be obtained. This calls to mind the fact that in developing countries (but also in developed

countries), we can not expect accurate data, rather rough estimates, and interpretation must proceed

carefully. In India for instance, extrapolations are obtained from the 52 sentinel surveillance centres

scattered throughout the country. The purpose of these sites is to monitor the geographical distribution of

the epidemic and the trend of infection, whether it is increasing or decreasing (Mohan, 1997). But the

question is to be certain whether the blood samples collected in these sentinel surveillance centres are

representative of the general population. This remains doubtful as long as the so-called high risk groups

(STD patients, intravenous drug users) are either under or over-represented in comparison to the so-called

low risk groups (voluntary blood donors and women visiting antenatal clinics) according to the States. Some

studies try to go further and make predictions which vary from source to source according to the material

upon which they rely. Attempts to describe the future scenario in India are emblematic of this problem.

NACO (National Aids Control Organisation) in New-Delhi has serious reservations about the 1994 estimate

of hiv prevalence and full blown Aids cases made by UNAIDS (3 million) which seems, for the head of the

organisation, more alarming then real (Mohan, 1997). These methodological aspects generate problems

regarding the minimum of knowledge required about the evolution of the epidemic. Additionally, they are

not free of international and national re-appropriation. One must be aware of the political implication of an

apocalyptic statement, and its political utilisation in order to strengthen control over a State (by an

international agency), over a region (by the State), over a population (by the government). If aids figures are

being inflated by the West to create apprehension in the country, some experts think that pressure can be

mounted on it to accept tests and vaccines and research on hiv positive and aids sufferers, eventually

without mandatory pre-trials. Epistemological reflections should also be a part of the geo-epidemiological

investigation.



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Figures on a large scale bring to light the disparity of the epidemic (Amat-Roze, 1989, 1993, 1995). The

study of HIV prevalence rates and incidence rates shows differences regarding the vulnerability of the

epidemic as concerns its geographical, socio-economical and cultural implementation. The relationship

between underdevelopment and hiv/aids can also be highlighted, specifically if the general socio-spatial

analyses are complemented by regional and sub-regional analyses. Going directly from the local to the

global and from the global to the local is a necessary methodological approach to which geographers are

accustomed to (Rémy, 1991).

Identification of poles of attraction in relation to the epidemic represents another interesting matter of

research. African studies go in that direction and an abundant literature, of unequal contents, is available

(Cf. articles in Health Transition Review, 7 suppl 1). In Tamil Nadu, in South India a behaviour surveillance

survey (Voluntary Health Services, 1997) has chosen geographical criteria to identify towns considered of

particular relevance for a growing incidence of the epidemic. The eight parameters included: places having a

high floating population, locations connected by highway, market areas, tourist areas, industrial areas,

places of pilgrimage, trucking towns, and a port or harbour. The hypothesis of a concentration of risk in

specific areas is obviously connected in that study with a large and regular movement and displacement of

population. Other more nuanced assumptions could be put forward, for instance by reducing the level to

that of small towns, village networks, and rural/urban relationships. Moreover, identification is not

sufficient in itself and the social dynamics which give credit to the effective existence of poles of attraction

should be analysed in greater detail.

It is just as important is to trace the dynamics of diffusion. Many variables are interconnected

(demographic, sociological, economic, cultural, psychological, etc.) and in-depth studies at the micro level

are necessary to get a clear understanding of the relations between the components of society. Dealing with

the mechanisms of diffusion leads to the concept of risk factors. The purpose is less to rely on effective

epidemiological data than to identify through a study of the living conditions of the people (a group, a

community, the general population) the dynamics of conditions likely to create situations of social and

individual vulnerability. Political instability, gender and social inequality, have been portrayed in order to

justify the dynamics of diffusion in Africa, South-East Asia and India (Twa Twa, 1997 ; Ramasubban, 1995).

Here, the frontier between human geography and anthropology becomes artificial ; and studies falling into

this category will be considered in detail below.

Mobility and migration patterns.

As far as evidence suggesting a direct link between migration and increased hiv prevalence has been

proved by a considerable amount of research, studies on migration related to aids have been extensively

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treated. The hypothesis that there is a direct link between migration and increased hiv infection has been

exceptionally challenged in studies done in South Africa and in the Cape Verde Islands (Brink et al., 1987 ;

Brun-Vezinet et al, 1987 cited in Bharat, 1997). However, most of the studies approach the question of

migration as a factor in the spread of the epidemic, in relation to the general problematic of population

mobility. Painter (1992) viewed the phenomenon through its deep-seated historic and economic roots in

countries like Niger, Mali and Ivory Coast, and analysed the potential role of the migrant associations in

aids prevention. Behavioural studies of migration undertaken in a multidimensional aspect have been able

to cover many vulnerable situations in detail (Pison, 1992). A literature on migrant population - generally

classified in three broad categories : displaced/delocated people because of wars and famines, long-term

migrants from one region or one country to another, and short-time migrants who regularly go back to their

home - is well represented in Africa (Desclaux & Raynaut, 1996 ; Diallo & Sarr, 1987, Hunt, 1989 ; Russell,

1990), as well as in India (Sircar & Tewari, 1996 ; Alam, 1987), and provides socio-economic and cultural

conditions which provide an opportunity for the epidemic to spread in various directions.

Apart from migrant workers, other categories of mobile workers do exist which have not yet received

proper attention. Other mobility patterns due to education, marriage, health, tourism, pilgrimage, etc, are

also to be taken into account. Studies have focused on a particular category of mobility, but attention is still

concentrated on groups like soldiers and sailors (Robinson, 1991), travelling sales-men and businessmen

(UNDP, 1992), truck drivers (Trust, 1991), miners (Ijsselmuiden, 1990), factory workers (Irwin, 1991) and

seasonal migrant workers (Amstrong, 1994). Specific problems of access to aids information by migrants and

strategies adapted for them have also been discussed between decelopers and social scientists (Taverne,

1995). This is, however, the visible part of the mobility pattern; a few studies have attempted to take into

consideration socio-spatial networks which are operating at a more « hidden » level within families, kinship,

communities (Herry, 1996).

Knowledge, attitudes, behaviour and practices

Enquiries based on knowledge, attitudes, behaviour and practices (KABP) have been the first set of easily

available « social » information. They have provided quantitative elements on which prevention activities

were supposed to rely : evolution of knowledge regarding the disease, cultural interpretations, perceptions

of risk, strategies of protection, and attitudes to preventive measures (specifically condoms). Once

encouraged by WHO, in particular by Man and Carballo, in the mid-eighties in order to provide a

possibility of formal comparison between countries, they have been discredited to the advantage of

qualitative investigations. Since then, the KAPB have been strongly criticised by a multitude of authors

(Bibeau, 1996 ; Gruenais, 1995), even if some are still trying to justify their relevance (Carael, 1993). There is

no need in this paper to repeat in detail the same arguments. Daily life cannot be comprehended in a simple

way. It is like selectively cutting reality into pieces which are then analysed separately. The social dynamics



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which contribute to change, adoption of new ideas and behaviour, rejection of others, are thwarted by a

false static vision of society. Either questions are too direct, and therefore there are few chances that people

accept to answer them sincerely, or too indirect and the connection has only a meaning for the person who

established the questions. For instance, I have seen this in India where it was asked in some ready-made

questionnaires if the women smokes or drinks alcohol : if a positive answer was given, it was a patent sign

of loose character and sexual promiscuity. Many other preconceived ideas could be mentioned, related to

homosexuality and truck drivers, marginality and bachelors. Apart from an evident discrimination process,

it signifies that moralistic values rooted in Indian society are present in the elaboration of the questionnaire.

An intrusion that should not be acceptable in a scientific approach.

The irony is that while this research protocol is more and more declining and discouraged in African and

European countries, it is still encouraged in India. Today it constitutes the framework for many studies on

the Subcontinent. One of the main reasons is because they are easy to conduct. No need to be a specialist in

social sciences, will argue the defendants. Another motivation is that it appears difficult to directly grasp the

phenomenon through observation. If research intervention is limited to human factors and to the immediate

records of what the people are willing to say, investigations just lead to a mere census of so-called cultural

practices, beliefs and knowledge. This enumeration of details does not take into account the objective

conditions (economic, social, political, ideological) which support them, make them feasible, imaginable and

necessary. In other words, KABP investigations are just treating the symptoms. They have forgotten that

development processes are inscribed in a long duration. Thus, conjectural analysis which depends on the

way a society functions, according to the level of knowledge that will definitely be modified in the course of

time, provides poor and less appropriate information in comparison with structural analyses, which are

more oriented toward the form (properties, social logics ....) than content (in a constant need to be re-

evaluated).

Sexual sub-cultures

The concept of sexual culture is an attempt to go one step farther by identifying groups peculiarities and

their internal networks. Schematically, the basic assumption stipulates that a complex urban or rural society

is composed of various sub-groups having different ways of life. Each member of these groups shares a

common behavioural pattern in some aspects which include, of course, sexual practices or any other risk

behaviour. It further indicates that groups are unequally exposed to the epidemic. For instance injection

drug addicts, their immediate social environment, sellers and pushers, are bound altogether for the sake of

the drug and develop a network system where interpersonal relationships generate specific risk practices. A

similar pattern occurs for women in prostitution, pimps, brokers, prosecutors and clients. Taking into

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consideration the less complex and more homogenous society it become possible to classify them through

some cultural practices like their matrimonial customs or any other traditions supposed to give rise to an

original sexuality. A typology of sub-cultures is, therefore, possible in order to provide a range of risk

activities including sexual conduct, body practices (infibulations, scarification, exchange of blood), and so

on.

Whatever the relevance of such group identification, the concept of subculture has led some authors to

attempt some rather hazardous generalisation. While trying to explain the rapid evolution of the epidemic in

Africa, Caldwell and Quiggin (1989) justify the outbreak by the existence of a specific form of sexuality in

which matrimonial links are weak, polygamy a typical feature, and divorce easily accepted. African

sexuality appears as a specific characteristic in the Sub-Saharan countries which in turn accelerates the

prevalence of the epidemic. Interpretations about the rapid diffusion of the epidemic in Africa have gone

further, in particular in India, where it has been commonly stated that it is because Africans practice free sex

(to some extent like in Europe). Many doctors, administrators and other personalities involved in hiv/aids

in India naively gave me this reason, maybe to justify their perception of why the epidemic cannot reach the

same alarming level in India due to a stricter social organisation, and a morality based on religious

principles. This Is a statement which apparently contradicts the facts and figures of the present Indian

situation.

The concept of sexual sub-culture has crossed the ocean and has been accepted as a matter of fact in

South-East Asia, specifically in Thailand, where many studies are conducted in and around Chiang Mai.

This area inhabited by ethnic groups is in fact greatly affected by the epidemic and one can observe a

tendency among researchers to describe the webs of influence in each group, or between groups, which

create situations of vulnerability. Analyses of traditional sexual patterns, loose traditions and change in

society induce the authors to remark that, « in addition to the(se) two economic and social determinants

which play role on the surface at the community level, it is obvious from the interviews that a so-called

sexual subculture which existed in and was practised by these communities for a long period of time, have

played a significant role in determining the spread of Hiv virus in accelerating the rapid rate of transmission

among the community members themselves » (Limanonda, 1996). It is dispiriting that such studies establish

an in-depth inquiry within the community, but without sufficiently relating the situation to the recent

impact of drugs, forced migration, agricultural national policy constraints, and the development of sex

tourism. Emphasis on cultural components, rather than integrating them in the broader societal context,

leads to the accusation of people by pinpointing their habits, their beliefs and their weaknesses. From a

public health perspective, implications are ideologically oriented : responsibility is the burden of the

population. International and national political circumstances assume only a marginal place in the

« subculture » explanation.

Similar attempts take place in India. As George says "research is shifting from sexual behaviour itself to

the culture setting in which it is taking place, and to the cultural rules which organise it. Exemples of such



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research ae the nascient studies on sexuality among college going youth, and on the different homosexual

communities"(1997, see her bibliography). But extrapolations go further when for instance NACO

established a list of 6 or 7 highly vulnerable groups. This methodological approach supposes a heterogenous

sexual behaviour among different goups in India, in which a part of the society (middle class, upper class,

middle-aged people) is apparently not concerned by the threat of the epidemic. A planned research

programme has been locally implemented in both North and South India with the same parameters. Results

of the study have so far not been presented to the public because of its « sensitive » aspects, but one can

perceive in the design of the proposal a clear attempt to circumscribe a pattern sexual risk for each group.

Later, ODA, the International Aid Agency from England, decided to classify the tribal people in India as a

risk group, in the same way they consider others as highly vulnerable, like street children, slum people, etc.

Here again is a universal mythical representation of the tribal people, considered as a part of free-sex

communities, sharing their wives with their guests, and mixing together without any taboos. The

underground idea in the context of an epidemic like aids is that the individual in danger becomes a danger

for the others (the general society). On the other hand, more objective studies have drawn attention to the

socio-political vulnerability to hiv infection among hill tribes in Northern Thailand (Kammere et al., 1997) as

a result of government policy and the external exploitation they are facing.

The obsession of cultural practices

In the same line some studies have focused on making inventories of the cultural practices bound to

generate risk situations with regard to the epidemic. Such inquiries have usually responded to an explicit

demand of public health officials who perceive the anthropologist as a mere specialist of the culture,

emphasising the exotic dimension of his background. This misunderstanding has not prevented some social

researchers from adopting this position - sometimes motivated by financial incentives giving a unique

opportunity to undertake research - and have contributed to promoting a reductive, if not pejorative,

representation of the discipline. Enumeration of superstitions, customs, beliefs, habits (including sex

practices), particularities which are either specific or shared by different groups or cultures have been

utilised to explain the different level of contagion from one place to another. It has led to the compilation of

a catalogue of "good" and "bad" traditions in which some rational changes must occur. Needless to say, this

approach is a mere vulgarisation of a holistic and dynamic understanding of the social, but at the same time

it symbolises the visible expression of a culture which doctors, health workers and NGO activists are facing.

Their expectation therefore concentrates on establishing an exhaustive identification of these ideas,

misconceptions and risk practises, without ascertaining their general validity, inasmuch as variations from

one person to another can be unlimited. An instrumentalist approach predominates and analyses are

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narrowly restricted to individual practices and the pedagogy which could change them. Whatever the

relevance of this enumeration, social and economic conditions which determine the supposed cultural

practices are neglected. It is also unrealistic to isolate an element of the system and to try to modify it

without changing the conditions which generate its appearance. Combinations of social processes which

create collective situations of vulnerability to the contamination by the virus are entirely obliterated in this

approach which, sadly, is a common feature among NGOs representatives we have encountered in India.

The social representation of aids and sexually transmitted diseases

The comprehension of the health conception of a population provides keys enabling one to avoid certain

mistakes through confrontation of two different languages by considering any sickness as a representation,

and as a total social fact. This means to comprehend it as an intellectual as well as a pragmatic production

(Zinzingre, 1984). A representation does not only refer to abstract thinking but also to conduct. Every health

problem or misfortune calls for an interpretation, and specifically when it is related to sexuality. In Indian

society, the vernacular, popular and classical, classification of disease cannot be juxtaposed with the

biomedical classification. Syphilis has been identified and described in the old ayurvedic literature as an

ailment connected with sexual relations, but this is not the case for all the other sexually transmitted diseases

: some venereal diseases are perceived as infections having their roots in an improper natural environment ;

others as repercussions in the body of a hot/cold imbalance. Conversely, a disease like leprosy is considered

as the consequence of the breaking of a taboo, of an illicit sexual act within the kinship group or undertaken

at a prohibited time (during menstruation, inauspicious day, etc.).

These observations which most of the time appear irrational, illogical and amusing in the doctor’s mind

(as a well-known doctor from Madurai told me), are, however, important to know because they can be a

reason for which a patient stops a treatment, or refuses counselling when he comes to realise the

discrepancies between his sociocultural perception and the doctor’s s scientific statements. Another issue,

mentioned by Laurent Vidal in Senegal (1997), is to wonder whether a doctor, or a paramedical staff is in a

position to take into account the patient’s experience of his physical and moral sickness. The assumption is

that the doctors should be able first to listen to the layperson through his own categories of classification

(and ways od understanding the world).

The representation of sexuality, body and fluids

Special attention has also been given to the sociocultural representation of sexuality (norms of avoidance

and permissibility), as well as to vernacular knowledge and conceptions related to the body (mainly body

fluids) and sexuality. In India for instance, the hot/cold classification influences the perception of sexuality



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and people’s sexual attitudes and behaviour. To summarise this system very briefly, these two categories are

the reflection of internal and external influences (but not only on the body) which imply a certain attitude,

restriction, avoidance, desire and expression in people's daily life. Many truck drivers explain their

"biological need" to have sexual intercourse when they are on duty because their body is subjected to "heat"

when they have to drive long distances. The uncomfortable sitting position, the strains on the arms and the

lack of sleep generate some change in the internal thermo-regulation of the body. Emission of sperm, like

taking some cold food (curd, lemon), is a way of removing the excess of heat, but, at the same time, night

emission is linked with a loss of vital energy, which is not the case during heterosexual relations.

Anthropologists (Bibeau, 1995 ; Heritier-Augé, 1984, 1996) have convincingly argued that sexuality

cannot be separated from the notions of fertility, fecundity and rituals associated with the life cycles of

women and men, femininity, masculinity, lineage relations, ancestry, filiations and links with matrimonial

prohibitions. These terms obey the same grammar, like a common structure commands and underlies the

notions of infertility, aridity and drought. This hypothesis has found some relevance with the hiv/aids

epidemic (Diemberger, 1993), when authors explain that in African countries pathological states are

provoked or characterised by perceived anomalies in fluid movement, either excessive flows or blockages.

Such a notion is close to the ancient theory of body fluids in ayurvedic medicine (Kitumbiah, 1974).

Therefore, a constellation of notions which constitute a particular cognitive disposition causes some people

in Rwanda to fear that the condom would remain in the vagina and cause harm to the woman (Taylor,

1990), and ultimately generates resistance to their use. In Tamil Nadu, blood is associated with sperm, and

sexual intercourse is also an exchange of blood (Kapadia, 1996). Other complex conceptions related with

with the functioning of the body explain to some extent the confusion people feel when preventive

programmes use a Western-minded logic to explain the distinction between blood exchange, sexual

intercourse, sperm emission and the risk of transmission. In the same way, it is useful to know local

perceptions of the body and its vital components in order to communicate messages of prevention intended

to explain the epidemiology of the disease.

Sexual alienation and gender relationships

Women's issues are much debated (Cf. compilation of references in ICSSR, 1982 ; Kumari, 1990). The

relation between education and awareness, socio-economic status and access to health care, the position of

women, their political and economic participation in the community and in society, their migration, their

potential empowerment or, on the contrary, their new vulnerability through access to new jobs, new

functions and new roles in the setting of the urban family have been thoroughly discussed. Care has been

taken to show the gap between rural, regularly migrating women and those who live permanently living in

14

town. A large number of references are available in India and in particular in Tamil Nadu (Kumari, 1990).

The status of women in changing societies is of particular interest when connecting it with the perception

and various levels of collective and individual vulnerability to hiv/aids. Other subjects, like meaning and

identity in the time of aids (Altman, 1995), women, fertility and power (Mougne, 1984), gender and

cosmology in Thailand (Sparkes, 1993), sexual identity, homosexuality and bisexuality, or transexuality in

India (Nanda, 1990) offer significant and relevant analyses about the diversity of lifestyles inherent in a

particular homogenous but non-uniform group. Significantly in India, women’s experience of physical

violence and psychological oppression in the home and their perception of their bodies and sexuality have

provided in-depth pictures of how a female body is viewed, as a « body-for-others » (Kakar, 1990 ; Thapan,

1995), culturally constructed through media images and through women’s internalisation of the gaze of the

other. Such facts reinforce the idea that what women have experienced as oppression is a denigration of the

body-image and sexual identity (Dube, 1988).

Other works recall that, in India, the social construction of patriarchal social systems, the enforcement of

compulsory marriage, the procreative necessity of boy children, and the framework through which sexual

behaviour and desire have manifested themselves over the centuries, have created a pattern of destruction,

marginalisation and denial (Khan, 1994). Authors do not stop here and maintain, sometimes in an

ideological way, that this structural construction of the womenhood finds its biological expression in the

contemporary South Asian situation concerning alternate sexualities which exhibit brutalities in sexual

behaviour, as shown by the significant levels of vaginal and anal tearing.

Finally, these studies dealing about the social construction of gender have contributed to clarify to some

extent various aspects linked with sexuality but to the detriment of sexual experiences of individuals which

should include emotions and feelings wich are connected.

Reproductive health and hiv

The focus on the health of mother and child is currently a key element in every health policy. The of

targeting pregnant women and babies in order to sustain infant survival is likely to come under increasing

strain in the coming years, according to recent trends and discussions going on the international level

(Family Health International, 1993). Due to the possible vertical hiv contamination (from mother to child),

the lack of control of women over their own sexuality, the problem of access to health care, and biological

acute vulnerability of women to hiv infection, some fundamental questions are raised about sex and

sexuality, socialisation and self-worth, gender relations, family structure and female autonomy

(Ramasubban, 1995, Jejeebhoy, 1993; Mahajan & Verma, 1995). A new concept is empowerment in

contradistinction to vulnerability. Exploratory studies on the role of women in reproductive decision-

making in Nigeria, Thailand and other countries (Orubuloye, 1997; Caldwell & Caldwell, 1993) have

asserted that women are increasingly taking active decisions on matters affecting their daily life, which, does



15

not seem to be the case in India as concerns the relations between social life and women’s areas of control. In

some parts of Africa and Thailand, more women than ever before argue that they are in a position to take

decisions on family size, when to have a baby and on the choice of spacing period (Jeffery & Basu, 1996).

Studies have shown variations among Muslim communities (Khan & Patel, 1997) and Hindu Communities

(Chanana, 1996). The actual state of research in Tamil Nadu seems to have reached an advanced stage in

comparison with many other Indian states. Conventional and traditionalist approaches (Wadley, 1980) are

challenged by comprehensive, dynamic (Dube, 1986) and postmodernist approaches (Kapadia, 1996). Other

studies seek to evaluate whether the ability of women to take decisions on theses issues may reduce their

vulnerability to STDs, including aids from a diseased or high-risk partner. In that respect, recent figures

given in various inquiries show that women in Africa are more in a position to negotiate the use of condom

or any other way of precaution during sexual intercourse with their husband, or any other partner, than in

India (Balk & Lahiri, 1997). Recently, Shireen Jeejebhoy (1996) enumerated several research project related

to adolescent sexuality and fertility, such as investigating pre-marital sexual behaviour, awareness and

attitudes among more representative samples of adolescent boys and girls, describing the level, patterns and

context of abortion among both unmarried and married adolescent girls, as well as the awareness of the

legal status of abortion, conducting community-based studies on obstetric and gynaecological morbidity

among adolescent girls, and sexually transmitted infections among boys and girls, investigating adolescents’

access to health care, and the constraints they face on acquiring good health, using rigorous, in-depth, and at

the same time, sensitive and culturally appropriate research designs to elicit data about adolescents.

Underdevelopment and poverty

In their separate works, and especially during the last international Conference on aids in Vancouver, R.

Parker, J. Descosas (1992) and P. Farmer (1995, 1997) tried to remind the international community that a

sufficient number of in-depth field studies available in Africa should give renewed impetus to the

understanding of the cultural, social and economic dynamics which influence the spread of the epidemic.

Studies have shown that structural factors should be the main object of focus. Emphasis on culture can be

dangerous. For instance, populations move because they do not have the means of survival in their land of

origin, or because they are forced to do so, like in Burma or during the last wars and famines in Africa.

Again, if we cite Farmer (1997) the age difference between sexual partners may depend on local cultural

structures, but it can also represent a means of survival or of access to resources. In areas where the

women’s level of education is higher, then the difference between partners decreases (Descosas et al.; 1992).

Hence, the relation between inequality, development level and Aids appears more clearly. During our

personal investigations, it was a revealing fact than many of the young girls and women involved in

16

prostitution in Madurai, in Tamil Nadu, come from the poor and deprived area of Arrupukottai, where

child labour is intensively practised in factories.

The contributions of social factors (related with poverty and oppression) to the progress of the epidemic

is not more difficult to discern than some supposed cultural risk factors. Social scientists have the

responsibility to raise the question again, inasmuch as it is not effectively, or sufficiently, taken into

consideration. Finally, one can wonder why the already known connection between underdevelopment and

vulnerability to various diseases including hiv/aids is still absent in the main debates, and specifically in

most of the prevention projects. Anthropology of the institutions which could explain the logics of the

different actors, from the layperson to the funding agency’s decision-maker and the government

representative, would be in a position to provide a better comprehension of this rule of silence and to

suggest potential solutions for a more integrated approach.

Sociocultural and political aspects of discrimination

Because of the inherent threat by the disease that challenges the respect of human dignity and human

rights, laws have been promulgated since 1989 in Europe, stipulating that « every discrimination against

infected persons constitutes a violation of human rights and restricts, through its effects of stigmatisation

and exclusion, an efficient prevention policy » (European Community, 1990). International agencies do

insist that struggle against discrimination is a step forward to a better prevention (United Nations, 1991).

Anthropologists, along with legal advisors, have pointed out that one of the roles of their discipline is to

combat all forms of discrimination : first by pointing out where discrimination exists, how a particular type

of social relationship gives rise to a particular type of discrimination, and then by demonstrating its

falseness. Researches have been conducted in Africa (Schoef, 1994; Mc Grath, 1994), and in India as well

(Hans, 1997; Thomas, 1995; Groover, 1996). A good reference for anthropological investigation is the work

done by Paul Farmer (1996) in Haiti: the country and its population were accused in the early eighties of

being partly responsible for the spread of the epidemic in the United States. The author has analysed the

reason which led to the stigmatisation of a population and a society. Another example, with a genuine

validity regarding Aids in India, is the artificial constitution of high risk groups who are subjected to

discrimination, either from a juridical or from an economic, sociocultural point of view. Although a few

persons have raised their voices against this attitude tacitly approved by the government and the

international founding agencies, most of the NGOs in Tamil Nadu are as a priority focusing their actions on

targeted groups like prostitutes, truck drivers, slum dwellers, etc.. Motivated by preconceived ideas and

supported by inadequate preliminary surveys, this attitude stands in contradiction with a community-based

approach and ultimately to adequate individual prevention. Lorry drivers and women in prostitution are

part of a complex social environment, and preventive actions must be understood in this context, and not by

isolating them from the whole system and the dynamics that determine a posteriori their behaviour. The



17

findings of some works do, however, contradict the falseness of this discriminating attitude. Interestingly, a

study conducted in Mumbai among a sample of 4500 persons referred by physicians to the Aids Control

Research Organisation revealed that 52% of the total where infected. Most of them had pre-marital sex and

extra-marital sex with partners of their own community, and not with prostitutes (Chennai, 1996). It proves

definitely that prevention has to be adressed, in different ways, to the general population.

Recently, some women who have written one of the most sensitive report, done by the National

Commission for Women (Usha & Chelliah, 1997), have started to fight for human rights and to lobby for

laws against abduction, abuse and rape of children (below 18), especially those who are engaged in

prostitution. This group of women who is having members of inter-state committee of sex-workers in India

do not hesitate to challenge NGOs, government representatives to take real action in favour of the "silent

adolescents" who are more and more in demand for industrial sex in the time of the epidemic, while these

girl children are treated as offenders under law and lumped with adult women convicted under prostitution

laws. In spite of the number of kidnapping, abduction, trafficking and rape is high, no sections of laws

under the Indian Penal Code have ever been applied according to their extensive study.

Ethical issues

Many countries have passed laws empowering public health authorities to resort to restrictive measures.

These include "placing hiv infected people under surveillance, isolation or segregation, mandatory

hospitalisation, or imposing specific restrictions on their behaviour"(Hans, 1997). In many hospitalisation

and operation delivery cases, compulsory secret testing, without the knowledge of the person, is the

informal rule on the Indian subcontinent, and is quite rampant in Tamil Nadu judging from our personal

observations in private and public hospitals. Advantages and limitations of hiv tests for the pregnant ladies

have been described in Africa (Msellati, 1996). Doctors are willing to protect themselves, but one can argue

in this case that patients would not have the possibility to be protected from the surgeon, if the latter were to

be infected. The breach of confidentiality after the announcement represents another ethical issue which has

been a focal point of discussion in Africa and India (Vas, C.J. 1991 ; D'Souza, 1991), where the guarantee of

anonymity is not always respected. Regarding the vaccine and clinical trials, authors have expressed their

worries about their acceptability to and their feasibility for the population concerned (Raynaut, 1993 ; Linard

& Souteyrand, 1993). The question of placebo and the « double blind » have been subjected to scrutiny as

well (Gasekurume & Saba; 1994), in the same way it has been challenged in America and France by the

association called Act-up.

Whether or not to announce the HIV-positive status to a person is in itself a subject of anthropological

investigation (Vidal, 1995 ; Raynaut, 1995 ; Gruenais, 1994 & 1995 ; Raynaut et Muhongayire, 1995), and

18

social scientists have attempted to evaluate the multifarious implications of revealing to a person his or her

seropositivity in countries where aids has been assimilated to death and where proper conditions of

screening and counselling are not accessible for the general population.

Matters of counselling (theories, applications) are presently in vogue, but social explorations have

revealed that many African and Asian countries are lacking in this kind of facility (Bakshi, 1994). In spite of

the rapid development of services, counselling seems to be more a kind of advice delivered in a uniform

way, a mere technique which is not free of morality, rather than a dialectical exchange serving to empower

the hiv-infected person to find his own way. Several accounts reveal that when correctly administered,

testing and counselling can have a real impact on sexual behaviour (Allen, Tice & Van de Pierre, 1992). It

means that judicious counselling not only helps the people and their families to prepare their future and

resolve problems as the illness progresses, but that it also reinforces prevention. On the other side, if the

counselling is restricted, as I have personally observed in Tamil Nadu, to say to a woman in prostitution to

give up her bad job and to be a good citizen, we can be suspicious of the issue.

To sum up, the need to avoid scapegoat, to integrate persons with hiv/aids in society and family, to

provide access to objective information, education and health services, to guarantee liberty and freedom of

movement, right to marry and found a family and to receive proper counselling are the main ethical issues

which require further study linked in connection with sociocultural, economic, religious and political

constraints. Only under these conditions, does the appropriate implementation of laws have a chance of

success.

Care and support

In the absence of a cure and due to the inadequacy of the bio-medical approach in its management, the

functions of family and community care and support assume special significance (Bharat, 1995). Studies in

Uganda, Ghana and other sub-Saharan African countries (Ntozi, 1997 ; Anarfi, 1995 ; Ankrah, 1991, 1993)

have shown that extended families and clans in African societies have extensive systems of treatment and

patient management which can be used with Aids sufferers, even if it is difficult to generalise because of the

stigma attached to the disease. In a country like India where stigmatisation is a common issue, the epidemic

poses a tremendous challenge for the family which has to cope, sometimes alone and without the help of the

community, with psycho-social problems. There is a trend to state that the family is the social unit in which

illness occurs, is managed and to some extent treated as well (Ankrah, 1993). Many doctors in Tamil Nadu

whom I have visited have explained to me that this is the reason why, after screening a hiv positive person,

they feel that the first step is to gather the family (parents on both sides for a married couple) and to disclose

the hiv positive status to the elders. In the name of the tradition, tragic reactions take place and lead to

exclusion, suicide and, as happened in Tiruchengodu (Namakkal district) a few years back, fratricide.

Similar rejections took place in villages near Madurai at a time when I was there. Some infected women died



19

alone, kept apart in a thatched house specially constructed for them. Ultimately they were not even allowed

to receive the last funeral rituals. These extreme situations are not exceptions. Many stories are related by

the media, but the bulk of them remain unknown and are carefully hidden by society. This raises a question

for social scientists who are concentrating their efforts on community and family care potentialities. This

should not signify that the State is not to meet its obligation to the civil society. Under many pretexts

("material does not function so we cannot attend any surgical operation for you", "no vacant places", etc.),

infected persons are ostracised from private and public hospitals when their seropositivity is divulged.

NGOs are not a substitute for the State. This is specifically the case when the latter has provisions and has

authorised its representatives to tackle the situation, to fulfil moral and ethical obligations. Having this in

mind, it is, however, important to look into family and community as organisations likely to extend support

the their infected members. In the absence of a social security system and a lack of appropriate social

institutions for health care, family care is inevitable. Its orientation, its content and successful conditions

have to be evaluated and comparison with African countries can be relevant even if, contrary to what has

been argued (Bharat, 1995), kinship and solidarity networks can be absent or play a negative role.

Health-seeking behaviour

Another point which receives poor attention in Indian literature, but which creates much agitation in the

media is the health practices of hiv positive persons and those who are full-blown aids patients. In India,

little is known regarding the healing practices of infected people, their trajectories from self-medication

(diet, change of conduct of life, etc.), to the potential recourses to family, government and private medical

institutions, religious bodies, and so on. From home to counselling centres, from public health stuctures to

private practitioners, from modern medicine to traditional medicines, therapeutic itineraries are complex.

Being irrevocably classified as a killer disease by the biomedical establishment, infected persons switch over

alternative medicines. In South India, a few charismatic healers, with more or less good intentions, claim to

cure the disease, sometimes with costly treatments, and receive attention from the sufferers (Gangakhedkar,

1994). The government prefers, it seems, to completely ignore the debate and has yet to deliver a clear

position. The situation is in fact more complex, as many biomedical doctors do no tolerate challenge. At the

same time, other doctors whom I have met are themselves discretely directing the patients to alternative

medicine, either homeopathy, Siddha, or Ayurveda.

History has proved in many societies that diseases whose aetiology could not be readily explained have

been given supernatural explanations in spite of the ongoing "rational" educational campaign. A similar

thing happens with the hiv infection, having no cure for poor countries, and having a doubtful origin for

the majority of the people. Such explanations of the disease's causation influence people’s attitudes to the

20

disease as well as to the infected persons. Aetiological perception conditions the health-seeking behaviour of

infected persons. A large number of studies in Africa (Kosia, Sambia & Fofanah , 1993 ; Mwebe et al., 1995 ;

Senyonga et al., 1993) have been oriented in that direction and manage to demonstrate that attitudes

towards the disease and health-seeking behaviour should be considered in the design of programmes for

infected persons.

Traditional healing in the time of the epidemic

The potential integration of traditional healers in the struggle against the epidemic is a consequence of

the approach taken by health-seeking behaviour. Their role in hiv/aids counselling has been the object of

various experiences (Homsy & King, 1996), as well as the benefit and problems related with the traditional

treatments for hiv/aids (Baguma, 1996), and for STDs (Nzima, 1996). In France, researches done by social

sciences do not have any commitment in this matter. Some argue that such an insertion is a mark of

defeatism (Hours, 1996), while others point out that every motivating human resource should be employed,

following the WHO recommendations in the late seventies for the integration of traditional healers in

primary health care.

While research on cure is not only a medical challenge but a sphere related to political power, with a

particular relevance during the outbreak of a new epidemic (Fassin, 1996), social and political re-

appropriation, whether by institutions (government bodies), groups (doctors' associations), or individuals

(traditional practitioners), is going to influence the nature of the relations between doctors, healers, the

general public and health seekers.

Further orientations

Much has been written in this first series of research and the ensuing practical applications have

sometimes generated fortunate initiatives, sometimes enormous blunders. Nevertheless, there are other

themes, or rather other angles of approach to the epidemic which deserve attention, either because they

evoke an as yet little discussed or overshadowed aspect, or because in he light of newly started actions, new

questions arises.

Social analysis of the messages dedicated to the epidemic

Adjusting the preventive messages to the targeted populations is not a new idea, but health

administrators have to realize that it should go beyond a simple process of communication marketing.

According to Leviton (1989), five theories have been elaborated to help in the implementation of prevention

programmes: the cognitive and decision-making theory, the theory of apprenticeship, the theory of



21

motivation, the theory of interpersonal relations (interactionist school), and the theories of communication

and persuasion. Another recent theory focuses on the development of responsibility strategies leading to

empowerment (Holland et al, 1992). None of them has proved its supremacy over the others and

combinations of concepts have been attempted. However, they all have the tendency to take an abstract

form, removed from the sociocultural realities, whenever they try to generalise their social construction of

how an adequate implementation should be.

Uniformity in the implementation of message prevention is nothing but a failure. A key which opens all

doors is not a good key. Reciprocally, the elaboration of socio-economically and culturally adapted devices

suggests preliminary inquiries about the living conditions, constraints, ideologies and aspirations faced by

targeted groups. Taking the example of the slum dwellers in Chennai, it is surprising to note that outsiders

(including many NGOs) have preconceived ideas about the inhabitants, who are classified as « different

people » in a derogatory way. Infantilism is another approach attitude that people cannot received but

badly, and which hurts their dignity.

From risk perception to subjective vulnerability

The adoption of measures of personal prevention against the virus is conditioned by the ability of the

person to consider himself potentially at risk of being infected (Desclaux, 1996) and eventually infecting the

others. At the beginning of the aids epidemic, certain groups were perceived as the main vector of the

disease. In Africa, and later in India, foreigners were accused of being at the origin of the spread of the

epidemic. In America, those held responsible were Haitians, injected drug addicts, and homosexuals. This

designation of « the other » (from abroad, from a marginal group) is a typical feature at the time of any

epidemic. One of the perverse effects of the accusation of a particular group is that the others feel secure. For

instance in a cluster of villages in Burkina Faso, only 2% of the general population believed that infection

through husband and wife was possible or thinkable (Ouango et al.,1996). In the same country, no more

than 13% of boys and 2% of girls who have a sexual life considered themselves to be at risk (Ouedraogo,

1989, id). It seems that this attribution of risk only to some specific groups like prostitutes o truck drivers has

been induced in part through message prevention emanating from organisations (public, private) which

focus their campaign on high-risk people. During our own inquiries in Tamil Nadu, a few people (less than

20%) accepted the idea that everybody could be contaminated ». In rural areas near Coimbatore, where

information is more diluted, the percentage was even less.

Morality associated with prevention has undesired side-effects. In a country like India, where sexuality

outside the marriage is strongly condemned and spoken of as a « perverse », « illegal », « vicious » activity,

we may wonder whether NGOs or government bodies should adopt a similar language. In fact, it is mostly

22

the case, at least in Tamil Nadu. Among the numerous unmarried and married people who fall in this

category, an effect of marginalisation is created. Broadly speaking, and according to our personal inquiries

in urban cities (Coimbatore, Chennai, Madurai), two opposite reactions occur: the first is a reaction of denial,

while the second creates a reinforced sense of guilt. This sense of guilt does not imply acceptance of

abstinence or fidelity, especially when it is addressed to old bachelors, persons who cannot get married,

young widows or those whose marriage is a failure. As has been argued in Africa as well (Niessougou et al.,

1996), to consider oneself at risk, and to declare this openly, raises suspicion within the society. In Tamil

Nadu we have discovered through the examinations of life stories, that suspicion is already a sensitive issue

between husband and wife (mostly the former regarding the later), between lower class and upper middle

class, between backward and forward castes. Taking this into consideration, adding a supplementary

dimension of suspicion under the pretext of the epidemic is bound to generate a negative effect, especially

for the women who are already the victims accused of immorality.

Sexual apprenticeship

The social acquisition of knowledge regarding sexuality, the learning process through different channels

(traditional and modern), is a question of vital importance, depicted in many studies in Africa (Deniaud,

1993 ; Dédy & Tapé, 1993). The usual concerns of young people about sex and aids require a proper analysis

in order to answer their doubts adequately, which are sometimes far from the one put forward by the « top »

hierarchy (decision-makers, administrators). In a society like India, where young people are not expected to

be responsible as long as they are bachelor, many studies have described how young males and females are

confined to a state of ignorance (Thomas, 1995). Of course, some have their own strategies to overcome this

silence in their family through neighbourhood, friends and other relations. The growing importance of blue

movies (pornographic videos), yellow books (dealing with sex) and pink literature (love stories, romances)

among Tamil youngsters could be interpreted as a way to derogate the social stigmatisation of sexuality and

love. It is a pity that, so far, no research is being done in that direction. Conversely, the effects of sex in

cinema movies on youngsters are discussed.

For another perspective, sex education and personality development are perceived as two

complementary components of the person (D’Souza, 1979), and the distortions between Western sex

education and Indian sex education have to be highlighted for the sake of the NGOs, influenced by

international organisations, trying to focus on Indian youth groups through Western glasses.

Attempts to survey relations between education in the family and their role in sexual education is

neglected in India. While teachers express fears that a frank and honest approach to sex education in schools

may shock youngsters, others argue that it will arouse a child’s curiosity and create over-concern about sex

and sexuality (Thomas, 1995), and propagate the message of promiscuity in the name of fighting the Aids



23

epidemic. This is a typical assertion in India, which a few years back led an extremist political Hindu party

to propose in its election agenda, the total ban on preventive measures related with condom promotion.

The need to clarify the networking of sexual information, the preoccupations of the new generation, the

communication system they elaborate, the gaps and the fulfilment of these underground acquisition

processes, is of relevance because of its heuristic value. So far, it appears that youngsters have to cope with

that aspect of life by themselves because the state and the family are avoiding such taboo-based subjects,

even if curriculum developers in India are now concerned about framing a suitable syllabus and introducing

adequate information about sex, appropriate to age groups. It leads to the question of the meaning of sexual

education in school and college. Is the term « adequate », always mentioned but hardly characterised,

correlated with morality ? Positions are very different : partisans of sexual repression are promoting their

moralistic statements in the name of the integrity of Hindu culture, while others (Mahendra, 199?) adopt a

more objective approach. Thus far a lack of in-depth studies regarding the attitudes and behaviours of the

young generation toward sex, in terms of desire, emotion, frustration, strategies to cope, relation with sex

trade, etc, does not allow social scientists, or decision-makers, to present an objective perspective of the

situation.

Innovative approach to demographic models and matrimonial status

After observing that the age of the infected and infecting population and its aging are important factors

in the dynamics of the epidemic, a French demographer, Nicolas Brouard (1994, 1996) made a correlation

between the age differences at the beginning of the marriage or between sexual partners - increased by

demographic growth - and the annual turnover rate of partners. The age gap between partners appears to be

a risk factor. Studies in Africa have shown that a longer schooling period for young women could reduce

this age difference, the imbalance between the sexes and the unwanted polygamy of the women’s first

marriages. Jeffery (1996) and Jeejheboy (1996) have also pointed out that education is an improvement factor

for women's control of fertility and sexuality, and their social status in the family. These types of

investigations deserve to gain more attention in India, where age differences between husband and wife can

be extremely important, and long-term multipartner relationships are a frequent tendency. In our research

in the district of Madurai, it was found that, specifically among particular communities (but irrespective of

economic background), girls get married just after the age of puberty to aged men (most of the time the

maternal uncle) who already had a first wife. The custom for having a « keep », that is a second younger

wife living separately, or a partner already known before the official marriage, is also a tendency which has

been observed in various social classes in South Indian cities and, to some extent, in villages. Similar

findings at the macro level are put forward by Jeejebhoy (1996), who argues that despite " The laws

stipulating the legal age of marriage as 18 for females and 21 for males, early marriage continues to be the

24

norm in India especially among females even in the 1990s (...). Moreover cohabitation (gauna) also occurs

early. Among women aged 20-24, as many as 22% of rural women and 8% of urban women cohabited by the

age of 15. In India on the whole, about half of the young women are presumed to be sexually active by the

age of 18 ; and almost one in five by the time they are 15".

Integrating hiv/aids into sectorial planning

Recently the concept of mitigation has emerged (Tony Barnett, 1996). The idea is that the rapid spread of

the pandemic threatens to halt or reverse social and economic gains acquired with great difficulties The

growing epidemic is a transnational challenge that directly or indirectly affects economic growth,

democratic governance, the environment, population, and health. Importance is given to the impact of aids

on socio-economic development (Navarro & Cornell, 1989 ; Flemming et al. 1988 ; Bloom & Godwin, 1996)

and authors emphasise, according to their sensibility and formation, either purely global economic level

(Cuddington, 1994), or a more social, political, micro-economical level (Mbilinyni, 1994). In Africa, there is a

willingness to expand hiv/aids programmes not only by preventing the transmission of the virus, but also

by mitigating the adverse, multisectorial consequences of the disease. Tony Barnett and Blaikie (1992)

suggest the integration of hiv/aids into sectorial planning and have described the impact of the epidemic on

demography on macro and micro-economies, on commercial and subsistence agriculture, on education and

the health sector, on industrial and manufacturing sector, on tourism. This systematic approach enlarges

considerably the scope of the research on hiv/aids and offers some tools for a more adequate evaluation of

the epidemic, which becomes significant for the reformulation of national policies.

Apart form the macro-economic studies, the economic impact of aids on families has received poor

attention in developing countries and some authors have pointed out the limitations and inadequacies of

traditional approaches (Nathalie Béchu, 1993) to a topic in which concepts like cost, income-level, revenue,

remain so imprecise that it is prejudicial to the significance of the studies. The author recommends a more

global approach to evaluate the changes in living conditions of the families affected by aids in both rural and

urban areas, not only by valorising the economic dimensions input-output.

Other areas of interest

Documentation on the geographical implementation for the projects, and adequate health system

distribution for the care of the infected persons is lacking in many places in Africa, and even more in India.

The role of the health system has been debated according to four aspects: description and analysis of care

practices, acceptability of new measures (screening, counselling, announcement) and knowledge, attitudes



25

of health professionals, relations between private and public medicine. The third and the fourth aspects are

receiving a considerable amount of attention in India, where media and government realise the inability of

the doctors to cope with the sufferers and the widespread ignorance of the epidemiology of the disease

among the paramedical and medical doctors. In Africa, it was clear after a study in a paediatric ward that

the epidemic introduced dysfunctioning in the service, in the communication between professionals, as well

as between patients and their families (Desclaux, 1994). Qualitative inquires have supported the idea that

physicians, surgeons and nurses - like the general population - have their own sociocultural representations

regarding aids? Thus there is a need to clearly express the social conduct - universal: like syringe accident

connected with blood, and particular (i.e. with sociocultural adjustment) : like psychological care - which

professionals should adopt (Cartoux, 1996 ; Desclaux, 1994).

Hiv/aids and the inequality of access to the private and public health delivery system is a difficult

matter, as in many countries access to health care is already problematic. With aids it becomes more critical.

It is, therefore, unavoidable that the family’s duty, along with NGOs, becomes a substitute for the

government's action. Surprisingly, few studies have focused on continuity, transition or discontinuity of the

epidemic from rural to urban areas. This tendency is connected in India with a lack of data available from

the countryside and a major concentration of studies in urban and semi-urban settings, although more and

more research in Africa is being undertaken in rural areas. Studies on acceptability of treatment for

opportunistic diseases is, unlike in Europe and America, inadequately discussed. In India, where

tuberculosis is the main opportunistic disease, according to ICMR and NACO (Saxena, 1996) and where

every TB sanatorium has a large number of full blown aids cases, and public hospital wards have to provide

assistance and remedies for infected in-patients, social acceptance of the treatment is not yet a subject of

discussion. In the field of biomedical research in India, specifically regarding remedies, social questions are

raised, but they are hardly considered in the reports.

Ethically, the experimental drug trials undertaken in double blind vision have been a matter of

controversy, either in the mode of selection of the populations (voluntary agreement or mandatory

involvement), or in the nature of the explanations given to the people.

Some acquisitions lead to new perspectives. Parents as agents for change in promoting the prevention of

the sexual transmission of hiv (Deniaud, 1993) living conditions of young people and aids (Bardem &

Gobatto, 1994), access of youngsters to preventive measures and care, the phenomenon of marginalisation

(Werner, 1994), the impact of family environment, the social dynamics of youth networks, etc.

In fact, some innovative research is concentrated on subjects which are apparently far removed from aids

like family structures and change, internal community relations and clandestine acquaintances (including

incest), matrimonial strategies and practices, urban and village social configurations. Such studies are going

26

to the roots of the problems and challenge the superficial approach of the behavioural inquiries, such as the

one recently undertaken in Pondicherry and Tamil Nadu (Ashok, 1997; VHS, 1997).

Other current research is worth being noted, like the study related to donating blood in the time of aids

(Gobatto, 1996), the role of the media in the fight against aids (Deane, 1996), social and political issues and

the care of aids patients in the Congo (Gruenais et al., 1994), social and economic acceptability of female

condoms in Africa (Townsend, 1993), and more recently in South India (Chennai)1.

Areas poorly covered

The problem of orphans is one of the most tragic consequences of the epidemic. In African countries like

Rwanda and Uganda, with high mortality from aids, the traditional care-taker system for children with a

family has broken down in many cases (Cook, 1996; Ntozi, 1997; Verhasselt, 1995). There is a need to gain

more detailed understanding of the social situations surrounding choices in orphan child care so that

appropriate strategies can be designed. Aids, orphans and the extended family has become an area of study

in Africa (Foster et al., 1995). Because of the acute situation, the problem will also occur in India. It has

already been shown that sometimes the rest of the family refuses to take in a child whose parents have died

of aids, because of stigma, fear of getting the disease, or for any other reasons. Consequently, it justifies

studies related to the psychological effect of being orphan (Sengendo & Nambi, 1997). More alarming is the

care of the infected children with poor family support. Explorations on that issue have to improve as not

much is known about this in the Indian context.

Comparative studies in Africa and Europe demonstrate that transmission through breast-feeding is

considered to be one of the major factors which account for the difference between rates of mother-child hiv-

1 transmission in the developing countries (between 25 and 30%) and in the developed countries (between

14 and 25%) However, this epidemiological risk is not given priority status in terms of public health. Alice

Desclaux has analysed the reasons behind this resounding silence in Africa (1994). In India, as long as the

WHO and other UN agencies are orchestrating the recommendations (or the absence of recommendations in

that matter), it is high time to know what declared infected mothers are receiving as information, and how

they are able to cope with the risk of foetal and breast feeding transmission.

Going to the roots, the social context of political, community and family violence (gender relation,

alcohol, casteism, money lending & prostitution) appears to be, at least in our own inquiries and experiences

in Tamil Nadu, a subject of preoccupation if we look into the context of social and individual vulnerability.

Occultation of those social factors associated with physical violence (Khan, Townsend et al., 1996), which is

1 Two contradictory results emanating from two NGOs. One stating the acceptability of the femidom among ladies in prostitution and one refusing the acceptability for the same vulnerable group (Findings not yet published).



27

revelatory of social fractures in the contemporary Indian society, precludes any prevention efforts from

effectively reaching their « target ».

Finally, there are some subjects which have not been at all addressed, like the mechanisms of self-

exclusion or destruction (even if it is due to a social stigma), the social construction of risk, its deliberated

acceptance, which includes the psycho-social dimension of ordeal, and the new perception of emotions and

love. As Bernard Paillard has explained, sexual behaviour, is studied, but one cannot perceive how the new

"sentimental education" is going to take place (Paillard, 1996). What will be the influence of the epidemic on

man/woman interpersonal relationships? Consequently, no research is really related to emotion: the

perception of love, if we except interesting but short analyses undertaken by Kakar (1991) and other

psychologists in North India. Another issue is the relation to death, insofar as life conduct is influenced by

our perception of death. But the epidemic, strongly associated with a fatal issue for the infected person, has

produced social compositions in our imagination which have to ultimately arise, as sexuality is, again, a

compromise with death.

Complexity or confusion?

In the time of the epidemic, trying to evaluate the level of knowledge, awareness and the behaviour of

some high risk persons is legitimate, comprehensive and important. But modification of sexual behaviour

requires a deep understanding of how and why people behave the way they do. In conclusion to one of the

first books published in India on the sociocultural context of aids prevention, the authors insist as priorities

for intervention the necessity to establish linkages with the sociocultural ethos (Mane & Maitra, 1992). In

other words, this means to understand the social aspects of life which apparently are not directly connected

with hiv/aids. A strange feeling after five years is that such a wise decision is still under preparation and

has not yet been implemented, inasmuch as methodological issues involving the collection of valid and

reliable data are lacking in the domain of sexual behaviour.

Complexity cannot be avoided in the name of difficulty,. Reductionist approaches do not work, in the

same way as they have not been able to provide any relevant change in other development projects. The

complexity of an epidemic which has epidemiological, medical, economic, politic, sociocultural and

administrative dimensions raises the question of the necessary interdisciplinarity for its comprehension. But

paradoxically, appropriation of the epidemic by representatives of a discipline (microbiologists in India), or

by some members of civil society (administrators, charismatic leaders) is producing adverse effects in the

sense that information is, to the maximum, symbolically shared but does not generate a real process of

change in the way of implementing innovative national aids policies. Naturally, there are exceptions, like

Thailand and a few countries in Africa, where open discussions have led to an original approach. It is

28

interesting to see that in Thailand, aids policy directly depends on the Prime Minister and not on a specific

subordinate Minister. This implies an easier integration of the prevention policy in sectors of society.

At the end of this brief and selective scientific survey, I will quote again Paul Farmer (1997) who has been

insisting so much on aids and its relation with underdevelopment: « On the nature of inequality and on the

structure of poverty - increasingly a global process - much can be said. On the mechanisms by which these

forces come to alter sexuality and sexual practices, there is much to consider. On Africans’ lack of access to

both aids prevention and treatment, again much can be said. It is thus unfortunate that these topics have

been neglected in the biomedical, epidemiological and social-science literature on Aids to the benefit of a

narrowly behavioural and individualistic conception of risk ». Even if it is not a reason to reject the cultural

and symbolic dimension, the trend of the epidemic in India appears more and more clearly and it seems that

the epidemic is going to be widespread in every strata of the society. But little by little inequality in terms of

access to proper education, prevention, care and material abilities to cope with situations of vulnerabilities

leading to the exposure of hiv/aids will accentuate the difference between the deprived population, low-

income groups and more privilege classes, between men and women. How to reduce these inequalities: this

is perhaps one of the most relevant and difficult tasks for NGOs.

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recherches anthropologiques et géographiques sur l'épidémie à VIH: théories et débats

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