X - INDIAN WOMEN AND AIDS

Cyndi F. Robinson

and Wade C. Edmundson

AIDS IN INDIA

This chapter considers the situation of women and HIV/AIDS in a country which is well into an AIDS epidemic. Important vectors of the HIV virus in India have been previously identified as migrant workers, long distance truck drivers, commercial sex workers, blood donors, and IV drug users. The new vector is the ordinary Indian mother.

In the year 2000, especially in urban India, AIDS will reach its last stage where infected mothers are giving birth to children with the disease. Even by 1996, the National Aids Control Organisation of India said the Indian HIV seropositivity rate was 7.29 per thousand. By the year 2000, the incidence of HIV in Indian 15 to 45 year olds should be about 10 per thousand or 1 percent or 1 in every 100 young adult Indians. However, the distribution of AIDS is not geographically uniform. The prevalence of HIV infection among the seventy-five million people who live in India's twenty largest cities is approaching 40 per thousand or 4 percent or 1 in 25 young Indian urban adults by the turn of the century.

In 1997, a survey about the spread of AIDS in the city of Pune, near Mumbai, brought forth some startling results. The findings indicated the city had an HIV prevalence of 3.8 percent. Nevertheless, most surveillance testing is still only carried out on selected groups -- many commercial sex workers, a large proportion of STD clinic attenders, injecting drug users and blood donors and a few pregnant women attending antenatal clinics. Cyndi Robinson spoke to patients, doctors, non-government organisations as well as official spokespersons about the pace of HIV in the city. The STD (Sexually Transmitted Disease) Clinic at the Sassoon hospital receives around 30 to 40 patients every day, 50 per cent of whom test HIV positive. Both the awareness of the danger and means of tackling it are poor and the AIDS issue is rarely raised in public fora or in the local Marathi language press. AIDS discussion is mostly in English and this means the lower classes are not getting the what meagre message there is. Public counselling seem hardly to exist. Dr. Dharmadikari states "The situation has reached such a proportion that numbers hardly matter now. We need to immediately put in place a plan of action to, first, control the menace and then chart out an extensive after care-related programme. In more than 13 slums in this area, consumption of illicit liquor, gambling, open prostitution and eunuchs soliciting customers form a complete cycle to spread the disease. For the many youth here, consuming alcohol and visiting red light areas are proofs of their manhood. These acts make them feel macho in their own eyes and that of their peers. They regularly visit cheap commercial sex workers who may or may not be using condoms. There is no specific class or section of society which gets the disease. My patients include rickshaw drivers, sales persons, migrant labourers, married men, college students and even businessmen''

Says Dr Rohini Philip of the Seventh Day Adventist Church Hospital in Pune, "The major spread occurs mainly because men indulge in promiscuous high risk behaviour like visiting a commercial sex worker. This group is believed to be the primary group responsible for the rapid spread of the disease. Married men visit red-light areas. The infected man gets back home and has sex with his spouse infecting her as well. Ninety-five per cent of the women who have this disease have got it through their husbands."

Yet, as will be explained in this chapter, most Indian women are afraid to use condoms and the Indian government and health officials have just began to grapple with the coming tragedy. Says private practitioner Dr Vinay S. Dharmadhikari, "The government simply does not have the required infrastructure and I only hope that the situation akin to Africa does not emerge here. The situation is highly explosive. At the government level or at the voluntary level, we simply don't have any infrastructure ready to tackle the problem of so many numbers. If the patients can afford we prescribe anti-retro virus therapy or even the costly multi-drug therapy. Otherwise my effort is to advise the patient to go on a diet regime and I treat the secondary infections with the regular medicines."

AIDS is spreading among young, monogamous, married women in India who get infected by their husbands, according to a 1996 study by researchers at Johns Hopkins and the National AIDS Research Institute in Pune, India. "This is one of the first studies to demonstrate the spread of HIV to a group previously thought to be at very low risk," according to Thomas C. Quinn, M.D. "The only risk factor we found for HIV infection among the married women in the study was sexual contact with their only sex partners--their husbands."

"These HIV positive married women in our study probably represent a much larger population of low-income women whose husbands have multiple partners," says Margaret E. Bentley, Ph.D. These researchers studied women who visited sexually transmitted diseases clinics in Pune between May 1993 and July 1996. Fully 13.6 percent of the 391 ordinary India women patients, who were not sex-workers, were infected with HIV. These were almost all married women and their only significant risk factor for HIV infection was sexual contact with a partner who had a sexually transmitted disease.

The HIV spread to monogamous wives is clearly acute in India. Unless information about sexually transmitted diseases and AIDS is made available throughout India, especially among females prior to marriage and sexual activity, the ordinary Indian woman will suffer acutely. To raise awareness among both men and women, a number of small and programmes, run by both government and private organisations, are already underway. Although their effectiveness is questionable, participation in special women's groups is resulting in some women achieving improved levels of self-esteem and a changed perception of their worth. Indian women's vulnerability to HIV/AIDS can only be truly reduced by addressing the social, cultural and economic inequalities and especially problems of gender discrimination which are found in contemporary Indian society.

AIDS in the Home

Not only those who have AIDS suffer. A single AIDS-related illness or death can cause stress and trauma for the entire household. AIDS research in the past has tended to concentrate solely on the medical aspects of this disease, but as time marches on, and with no cure yet developed, more consideration is now being given to the impact that AIDS morbidity and mortality may have on the household. Increasingly, recognition is being given to the fact that a greater burden (both economically and socially) is placed on the mature female members of households. Traditionally, it is these women who are the principal caregivers in the family situation, especially in developing countries.

Socio-cultural reasons for Indian women's increased vulnerability have their roots in historical traditions and culture. Benign neglect of female children, dowry deaths, inadequate accessibility to appropriate health services, minimal access to educational resources, and poverty are some of the manifestations of women's social and economic disadvantages. Role expectations in the areas of marriage, sex and child bearing are additional factors increasing women's risk of contracting HIV/AIDS.

Further, women are more vulnerable to the risk of contracting HIV/AIDS than men. This is due to simple biological reasons and the widespread prevalence of STDs in women in developing countries. Basically women simply have a larger internal surface area in their reproductive tract and are thus more susceptible to HIV. Socio-cultural factors exacerbate women's risk. Low economic status and social inequality make it difficult for women to take prevention measures reguarding safe sex. In addition, Indian women's negotiating position with sexual partners is very often undermined by economic dependency.

AIDS Aetiology

For more than a decade the world has struggled to come to terms with AIDS. Few diseases have had the broad social and psychological ramifications and medical impact of this new global epidemic. First identified in 1981, AIDS (Acquired Immune Deficiency Syndrome), is defined as a reliably diagnosed infection predictive of cellular immune deficiency occuring in a person with no pre-existing conditions that would produce immunosuppression (Kelly and St. Lawrence, 1988). It is the final stages of disease caused by a retrovirus now identified as Human Immunodeficency Virus or HIV. This virus infects a group of white blood cells called the helper T-lymphocytes which play a vital role in activating the cellular immune system. Persons infected with HIV have a weakened or compromised immune system, and opportunistic infections with which a healthy individual could normally cope now become life threatening conditions.

Developing a cure for HIV/AIDS has proven difficult because of the fact that the HIV virus spends most of its life within those cells it infects. The difficulties in crafting a specific vaccine for this virus are enormous because the virus infects the cells that control the immune system - which is where antibodies to viral disease are made. Cell mediated immunity has proven ineffective and many efforts to fight HIV have now centred on interfering with the enzyme action.

Following infection with the HIV virus the seropositive person may suffer from a transitory 'seroconversion illness', this is followed by a latency period which averages 8 years and may last as long as 15 years (Timewell, Minichiello and Plummer 1992). During this latency period, the infected person may spread HIV to others through one or more of the following specific routes:-

. blood transfusions using infected blood;

. multi-use of needles during drug injection;

. through unprotected sexual intercourse, particularly anal intercourse;

. from mother to foetus in utero;

. from mother to foetus during birth;

. from mother to baby through breast milk.

Transmission Types

Three distinct patterns of AIDS epidemiology have been identified, refer to Map 1. Pattern I regions include North America, Western Europe and Australia and HIV infection within these regions has tended to be mainly in homosexual males and intravenous drug users. The WHO reports that over 90% of the cases in Pattern I regions are concentrated in these 2 well known risk groups with overall population prevalence less than 1% but over 50% prevalence in some high risk groups (Black, 1990, ).

Heterosexual transmission dominates in the Pattern II regions with equal numbers of men and women affected. Prevalence is over 1%, with some sexually active urban populations experiencing rates of up to 10%. Parts of the Caribbean and Latin America, East, Southern and Central Africa, and more recently Southern Asia are included in this grouping where heterosexual transmission is the main route of contagion.

Pattern III regions include the Middle East, Northern Asia and the Pacific area. Here, at present, the prevalence of AIDS is low with initial cases primarily linked to sexual contact with infected individuals from countries in North America, Northern Europe and Africa (Pattern I and II regions). However, this low incidence may just be an historical artifact of early diffusion.

AIDS and Women in India

HIV/AIDS has not yet impacted strongly on the Indian sub-continent and relatively little research has been undertaken. However, the Indian Government has acknowledged that AIDS represents a significant threat to the health and well-being of the country's citizens by establishing the National Aids Control Organisation. Studies undertaken by NACO and other interested groups, e.g. the Naz Project, the Indian Red Cross and a number of small private organisations have predominantly focused on prostitutes, blood donors and IV drug users. While the results of these studies and government publications provide useful information and data on the number of AIDS cases and the seropositivity of various 'risk' groups, there is still little research on the social aspects of AIDS.

This investigation began as a question. What impact does HIV/AIDS have on ordinary Indian women? Little had been done in this area. Indeed, world-wide, only a few studies have dealt with the impact of AIDS on women, although attention is now being drawn into this area of AIDS and its impact on women in Africa. As other researchers have noted, HIV/AIDS has a greater impact on women than on men (DeBruyn, 1992; and Richardson, 1990).

Qualitative research encompasses all forms of empirical and observational research, interviewing, and analysis of documents (Glasser and Strauss, 1967). It is an attempt to stay as close as possible to the actual behavioural experience of the social world. It makes little sense to study human behaviour in a laboratory or library because human social behaviour is far too complex to separate it from its contextual setting. As Blumer stated, 'the only way is to go directly to the material social world' (Giddens, 1989). This allows one to capture the understandings and behaviours of those who actually produce the behaviours rather than simply imposing one's ideas on why they behave like they do (Potter, 1995).

We began by looking at the kinds of questions that interest us, then followed with general ideas where to study and how to study, e.g. archival research, field observation, personal interviews. Data collection was the next step, and from this hypotheses were generated. Two methods were used to obtain information and data for this project. General information was obtained through archival research mainly in India, and specific material was provided by responses to a questionnaire administered to women in Pune, India.

AIDS DATA BASED ON PEOPLE AND PLACES

Published Data

Published works in a number of areas relating to HIV/AIDS were studied. Medical studies were read to gain an understanding of the HIV virus, methods of transmission and disease progression. Geographical studies gave information on the spread and possible vectors of HIV/AIDS and the distinct patterns of AIDS epidemiology. Sontag's book 'Aids and its Metaphors' proved useful in creating an awareness of the stigma which can be attached to HIV/AIDS. For example, "AIDS, like cancer does not allow romanticizing or sentimentalizing, perhaps because its association with death is too powerful"; (Sontag, 1989). As well as providing information on the stigmatising effects which AIDS can have, many sociologically based studies provided information on 'people' based investigations into the impact and effects of HIV/AIDS. However, only limited references could be obtained for HIV/AIDS in an Indian context.

The amount of information which could be used from other sources was limited by the fact that most of works dealt with problems of AIDS in either the developed world (where transmission has been predominantly by homosexual acts or the through the use of IV drugs), or Africa (which has different social and support structures and a longer exposure time to the disease than India).

Visits to university libraries in both Delhi and Pune provided valuable additions to the collection of material used in compiling this chapter. The United Nations office and in particular, the UNICEF office, were good sources of Asia/India specific information. Several UN AIDS programs are underway in the Asian region at the present time. UNICEF also provided a video containing three programs related to the issue of AIDS in India. A women's group based in New Delhi, Jagori, gave me the complete report on the National Workshop on Women STDs, HIV and AIDS which was conducted in March, 1994.

People Data

In addition to data collection and literature reviews, a questionnaire was administered to ordinary Indian women in Pune concerning their attitudes, knowledge, perceptions and reactions to the HIV/AIDS problem. Choice of a site in which to conduct the questionnaire was determined by several factors. Firstly the state of Maharashtra, in which the city of Pune is located, is recorded as having 26.5% of the country's AIDS cases. NACO estimates a major concentration of the country's HIV infected individuals (10% of those infected) are located in Bombay or Pune (1994). Pune is recognised as a 'hot spot' of HIV infection.

Some studies have been done by local research groups in Pune, but these studies have concentrated almost entirely on commercial sex workers. However, Dr. Mankeekar of Prabodhini Medical Trusts, Sanjeevan Hospital is at present conducting research and interviews to determine sexual behaviours of residents of Pune (sample size is 1,500 comprising both males and females).

A second factor in Pune was the offer of accessing patients at the Sasoon General Hospital. Dr. A Kapoor, a personal friend, allowed interviews among consenting female patients in the women's ward where he is the physician in charge. Through his help and introductions, much information was gained which was not generally available in research publications. Nursing staff at Sasoon also proved helpful with several volunteering to complete the questionnaire.

Thirdly and perhaps most importantly for the success of this research was the fact that an experienced multi-lingual interpreter and personal assistant was located in Pune. Pauline judges herself to be lower middle class - combined incomes of Pauline and her husband total approximately Rs5,200 per month (about US $180). Although a native of Tamil State in the south of India, Pauline has been resident in the state of Maharashtra and Pune for 25 years. She is fluent in several Indian languages - Hindi, Marathi, and Tamil. Her familiarity with local customs and nuances of the local language enabled gathering more information than would normally be the case. Pauline could identify subtle changes in body language of the respondents and convey this information, together with the likely reason for the change in body posture. She has a talent for putting people of any class at ease and this assisted greatly when a few of the respondents reacted uneasily to the more sensitive questions.

INDIAN WOMEN'S CULTURAL STATUS AND AIDS

Role expectations, low status and inadequate support for Indian women cause them to be at greater risk of HIV infection. These expectations are examined in relation to the psychological aspects of AIDS. Support networks are important to the ordinary Indian woman as she copes with the issue of AIDS. Reliance on these support networks arises also from women's lack of power in relationships. Divorce, violence or dire poverty may follow on from a woman's insistance on the use of condoms.

Women's Health in India

Social and cultural determinants relating to women's position in Indian society directly affect their ability to care for their health. This is especially so in regard to HIV/AIDS. Women's dependency on men, their lower level of education, limited access to resources, and lower economic status 'is enhanced in the area of health care, particularly in their incapacity to protect themselves from sexually-transmitted infection' (Black, 1992) Increasingly it is being recognised that cultural values and the status of girls and women in society are important aspects of the AIDS problem. AIDS is a development and gender issue (Seidel, 1993) Social inequality between men's and women's roles and positions is cited as being most responsible for the spread of HIV/AIDS in India (Balaji, 1994).

Because of their subordinate role, middle and lower class and especially village women are sexually vulnerable. Womens' rights to protection by police under law are paper promises. Abused Indian women are, in most cases, not protected by anyone. Although they are given comfort and sympathy by their friends and neighbours; their mother-in-law is often their enemy. How could such a women refuse sex to an AIDS infected husband.

They tend to have limited knowledge of the problems and the risks associated with the HIV virus. Women have less knowledge of how to avoid HIV 'and also less social power to oppose risk conditions' (Guzzanti, 1992 The same theme is expressed by Danziger - 'women's pre-existing social, economic, legal and political disadvantage heightens their vulnerability not only to risk of HIV infection but also to most of the impact of the epidemic' (Pachauri voices a similar sentiment - 'lack of social and physical access to health services for women further increases their vulnerability to the HIV virus' (1994).

A concomitant of women's low standing in society are the low literacy rates and lower educational levels. Because a substantial percentage of Indian women are illiterate (60% in 1994), anti-AIDS campaigns which rely on printed materials such as posters, brochures and pamphlets are not reaching a large portion of the intended audience. Additionally, women often have less access to radio and television. Edmundson, Sukhatme and Edmundson (1992) showed that the average working day for Indian village women is 11.1 hours, on average 3 hours more per day spent on economically productive work than males. Almost no time is available for 'leisure' activities such as listening to radio and watching commercial television. The resulting lack of sufficient knowledge concerning HIV transmission and other aspects of AIDS 'means that perceptions of risk, and knowledge of prevention methods will also be low and inadequate' (DeBruyn, 1992).

Becktill, (1994, pp.111-121) suggests that there is a singular force affecting women's health in India - endemic stress. The concept of endemic stress may be defined as 'a condition of continuous and manifold changes, demands, threats or deprivations' (Fried in Becktell, 1994). This stress may take the form of social and physical environmental determinants of deprivation, inadequate resources, limited role opportunities and oppressive cultural forces. The impact of this gender bias in economics, politics, family and religion is evident at a young age. Cultural practices in India limit women's opportunities in many aspects of their lives but particularly in their ability to counter this epidemic.

To sum up, a number of factors affect women's ability to protect themselves from HIV and AIDS. They are:

1. lower literacy levels

2. limited mobility

3. limited access to information

4. limited access to appropriate services for sexually transmitted diseases and other health services

5. lack of economic alternatives

6. attitudes towards sexuality

7. psycho-social, cultural and legal barriers to women's decision making powers and independence

All of these issues are directly related to women's status in society (Larivee, 1994, pp.7-8). It has been said that 'from the moment she is born, an Indian female is seen as a liability rather than as asset' (Becktell, 1994 The following section considers how this attitude in Indian society developed.

Historical Position of Women

The subordinate position of Indian women has its roots in historical tradition. Under the Harrappan or Indus Valley Civilization, Indian women had been accorded equality with men and liberal attitudes towards women in society were evident. The earliest reference to a decline in women's status occurred with the arrival of the Aryans into India around 1750B.C. Prior to this time, ancient India was populated by the Dravidians - who were agriculturists and tended to give women a high social position. Nomadic pastoralists, the Aryans had, as the basis of their social life, the patriarchal family - the oldest male member was the absolute head. It was during the development of Hindu Aryan India that attitudes towards women began to change.

From about 1,000BC, with increasing numbers of strangers in the port towns and trade centres of the sub-continent, social laws became more rigid. The Manava Dharmashastra or Laws of Manu, traditionally acknowledged as the work of the patriarch Manu, and written sometime during the first two centuries A.D., was increasingly quoted. The Laws of Manu contained clearly defined rules pertaining to lawful activities and functions of all members of society (Thapar, 1990). The womans role was to be an obedient child-bearer. 'If a wife obeys her husband she will for that reason alone be exalted in heaven' ---- 'to be mother were women created' (Laws of Manu).

It was also during this time that Hinduism (Brahmanism) underwent a revival, due in part to the patronage of the Gupta rulers (A.D. 300-700). A further classic of Indian literature was written during this time - the Mahabharata. It also contained counsel and directions which helped to determine women's place in society. Women were considered to be creatures of secondary importance. They were regarded as chattels, considered to be inferior due to their weak dispositions, and untrustworthy because they were creatures of the emotions, especially of love.

Pollution taboos associated with menstruation are partly to blame for women being considered 'agents of pollution'. Brahmins, the highest caste in Hindu society, had a fanatical obsession with cleanliness and ritual purity, and forbade women, (as impure and unclean), from taking part in religious practices and reading of the religious books of the time, the Vedas.

Hindu ethics and society were and still are governed by the concept of dharma - vocational duty - and to fulfil one's own duty was to earn the highest merit. Women's duty, as decreed by Hinduism, was to be a wife and mother. This attitude ensured little opportunity in life for women other than marriage and motherhood. Education was seen to be of little importance or need as a woman's place was in the home; father, brothers or husband.

In the Hindu religion it was vitally important to have a son, as it was the son who performed many of the sacraments, notably the cremation that ensured the well-being of his father's soul after death. Fearful of not being able to scrape together enough money and find their daughters husbands while still very young, some families resorted to the practice of female infanticide, thereby further lowering the status and value of women in society (Lannoy, 1971).

Interestingly, Manu drew a distinction between the woman as a sexual partner and the woman as a mother. As a wife, the woman was accorded a lowly status; as a mother, especially a mother of male children, the woman was accorded a high status. 'As a wife, she seduces her husband away from his work and his spiritual duties, but as a mother she is revered' (Lannoy, 1973). Although women's position in society has varied to some extent at different periods, the ambivalence and duality of her role has continued to be an important feature of Indian society.

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Ordinary Indian Women Today

In Indian society today, women are still regarded as lower than males on the social scale. Women's social standing and the inequalities between men and women directly affect their health status and their ability to seek health interventions. This is clearly reflected in low female life expectancy rates, especially in northern and central India. The Indian subcontinent has the dubious distinction of being one of the few places in the world where females have a lower life expectancy than males (Black, 1992). India also has a smaller female than male population. It may well be that oppressive cultural traditions and practices play a major role in determining women's lower survival rate.

A pattern of sociocultural practices which help to determine contemporary Indian women's status and subsequently their health can be identified. These are benign neglect of female children, dowry deaths, inadequate health care, minimal access to educational resources, and poverty.

Benign Neglect of Female Children

The economic burden of finding sufficient funds for dowry for marriage remains the prime cause of benign neglect of female children. Although dowry has been officially banned since the Dowry Prohibition (Amendment) Act (1968), the practice continues unabated. On a recent field trip to Pune, Pauline, my assistant, a married woman with four children (2 boys, 2 girls) was busy preparing the dowry for her eldest daughter. She explained that the bride's family was expected to pay all the costs of the marriage ceremony, to provide the bride with 10 saris; and to provide household goods which included pots, utensils and crockery, and to provide gold jewellery to the value of approximately Rs 60,000 (about US $3,250); and to give the groom a suitable gift of gold jewellery - most likely a gold chain. All of this was to be provided for from a lower middle class family who earned on average approx. Rs 63,000 (about US $3,500) per year (Personal communication, P. Pilmanraj, 1995). Others have confirmed that the average village dowry for the marriage of one daughter is usually equal to the average household income for one year saying "The archaic dowry system forces poor families to save for years" resulting in "hard working village women being regarded as a heavy economic burden rather than a boon jeopardising an economic system that requires healthy women for the family to survive" (Anderson and Edmundson, 1984).

A justification for selective female abortion is that it is a kindness to save another girl-child from a life of drudgery by allowing her death. With the advent and availability of suitable technology, in this case amniocentesis, the number of selective female abortions has risen (Patel in Becktell, 1994 A recent television documentary revealed that 99% of abortions performed, where the sex of the child was known, were on female foetuses (ABC Television, 1993). A superstitious belief that if a female infant is killed the next baby will be a boy may also contribute to this practice (Krishnawamy in Becktell, 1994).

Dowry deaths

Within the last few years the numbers of dowry deaths in India have increased. Dowry deaths are deaths of women which result from dissatisfaction or non-payment of dowry. The increase can be attributed to two factors - the growing consumerism in society, and the denial of women's rights in society (Bishnoi in Sarkar, et.al., 1993). Increasingly dowry 'is no longer a gift but rather a demand for cash and/or goods made by the groom and his family on the bride's parents (Ghadially and Kumar, 1988). It has become difficult to meet these demands and many a young woman has been killed for not fulfilling the expectations of the groom's family. Little or no action is taken against the perpetrators of dowry deaths which are considered to be family matters. Public life may be governed by secular law, but private life is governed by social and religious precepts.

Inadequate health care

With a limited health care budget (approximately AUD4 per capita per year), Indian men, women, and children particularly in rural regions, do not receive or have access to adequate health care services. Non-existent or inadequate health care facilities, a lack of trained care providers, high costs and a lack of meaningful health care policies contribute to inaccessibility of health care.

Health problems for women commence early in life. Discrimination against women and girls begins at birth. Girl children are valued far less than sons and consequently receive less breast-feeding, are fed last and with less of the 'rich' foods like eggs, butter and milk which their brothers receive. Inadequate consumption of vitamin D, calcium and protein may result in stunting, which in turn makes women particularly vulnerable to difficulties in labour and may necessitate blood transfusions - a risk factor for HIV transmission.

The ratio of male to female community health workers in India, (9 out of 10 health workers are male), may act as a further deterrent to women seeking health care. Trained to deliver care at the village level where it is most appropriate for women, these health workers have mostly male patients due to the fact that in many areas there are taboos against women being touched by men (Royston and Armstrong, 1989). Few women in India are involved in either management or planning of health delivery systems and this has resulted in existing health services being poorly adapted to the needs of women. The lack of women in higher positions in the health area has serious implications for AIDS programmes.

Poor Access to Education

Since a woman's worth is low, few resources are expended on her education. For the majority of Indian women, the completion of primary school is considered to be a very good education. One woman interviewed in my survey was quite proud of the fact that she had been educated to 8th level and considered herself to be most fortunate, as her friends had not been able to finish primary school. Indian females have a higher rate of dropout from grammar and high school and far less university graduate numbers than men. Numbers of female staff in tertiary education are significantly less than male staff. As well, there are curricula differences between men's and women's education, with women concentrated primarily in the arts and social sciences.

The level of education obtained has a direct bearing on social position, and lack of education restricts the type of work which one may obtain. As women hold fewer technical and trade skills and are less educated than men, they predominate in the unskilled, lower paid sections of the official work force - the 'feminisation of the lower paid positions' (Edmundson, 1995).

Their Basic Poverty

Female poverty, a feature of Indian society, often brings with it an increased risk of HIV infection through restricted access not only to health information, but also health services such as condom supplies and STD treatment (Mariasy and Thomas, 1990). Poverty may affect attitudes to risk-taking. When one is concerned about basic survival issues there is a tendency to ignore a disease which might not materialise for years.

An undetermined number of Indian women obtain work on a day to day basis: either in the cities on construction sites, or in rural areas as agricultural labourers. This need to earn cash may arise from a woman being widowed or more commonly these days, from the migration of men to towns and cities in the search for work. Often the husband's wages are not sent back to the family - the woman is forced to seek work in order to buy food for herself and her family. Additionally, women on low incomes cannot afford condoms and their negotiating position with sexual partners is undermined by economic dependence (Mariasy and Thomas, 1990).

Their Marriage

In Indian society, marriage is considered to be a central issue and is seen to be the mainstay of community life. In the past, marriages were arranged by the two families - often the bride and groom would not have met before the marriage day. Nowadays parents may ask their children about the suitability of their choices, and 'love' marriages are increasingly occurring (Khan, 1994). For most, marriage is a family obligation and is seen as compulsory. To remain single is an aberration and may bring shame and dishonour to the family. In keeping with the cultural values expressed earlier, a woman is not considered a social being until she is married and has borne her first child (preferably a boy-child).

Faced with these cultural values and expressions the vast majority of Indian women enter into, and remain in marriages. It is in their role as wives that they will be confronted with the possibility of transmission of the HIV virus. 'Wives are most often placed at risk by their husbands' (Bassett and Mhloyi, 1991). Women have much less autonomy than males in Indian society and this is especially applicable to young women in marriages. Indian women are much more supervised and policed by both family and community than men, and face huge difficulties if they wish to carry out socially illicit sexual encounters and affairs (Khan, 1994). This is not to say that such affairs do not occur, but the incidences of women engaging in such activities is postulated as low. The majority of women who contract the HIV virus are married women in a faithful monogamous relationship. Most will be in the reproductive stage of life, between the ages of 15 to 44 years of age.

On the other hand, Indian society does not frown on a husband seeking sex outside of marriage (Singh, 1994). Often sex with one's wife is seen as a duty. A wife and more particularly a mother, is held in special regard in a sexual context. Sexual desire or lust for the wife/mother is sometimes considered shameful. For this reason the seeking of sexual pleasure outside of marriage is condoned. Prohibitions against intercourse during the wife's menstruation, or for year-long periods after childbirth may be a further contributing factor to men seeking sex outside of marriage (Balaji, 1994). This has an obvious bearing on AIDS transmission.

Their Husbands

A further reason for sex outside marriage may be that husbands who work away from the home for lengthy periods are not expected to deny themselves pleasure and a 'little fun'. Singh (1994) reports that a considerable number of male migrant workers engage in sexual encounters with women other than their wives while working away from their homes. Upon their return these men re-commence sexual relations with their wives. Usually no precautions, for example condom use, are taken either with the wives or with the other women. The wives are thus exposed to the risk of HIV transmission. It has been forecast that eventually 'every 3rd housewife of Bombay will be found to be infected with HIV' (Jayaraman, 1990). An interesting aspect of this situation is that 'when men are infected, their wives are suspected of infidelity; when women are infected, they are assumed to have had multiple partners' (Bledsoe, 1991).

Child Bearing

In India, the role of childbearing is of considerable importance. Motherhood, especially the bearing of sons is a decisive factor in determining an Indian woman's social status (Balaji, 1992). Not only is childbearing seen as life-affirming in the face of poverty and the realities of the daily grind, but having a child also boosts a woman's feelings of self-worth. Children, or the prospect of having them, represents an investment in the future and provides a strong motivating force in women's lives (Mariasy and Thomas, 1990). Motherhood brings security, status and validation (Carovano and Schietinger in Kurth, 1993).

In a society such as India's, which defines the primary function of women as that of bearing children, the non bearing of children is seen as abnormal (Mariasy and Thomas, 1990). Socially there is little status for women who do not have children (Carovano and Schietinger, 1993). Faced with such pressure many Indian women will have unprotected sex with their husbands even if they are aware of the risk of HIV transmission. The wife may know that her husband may have had sex outside of the marriage, or she may be aware that her husband and then herself are HIV+.

Furthermore, a considerable proportion of Indian women suffer from iron deficiency anaemias. During childbirth these women are at increased risk of experiencing severe blood loss. This in turn leads to increased risk of acquiring HIV infection from blood transfusion (Balaji, 1994).

Psychological Aspects and Support Networks

That AIDS is having an enormous impact on society is undisputed. Not only does AIDS cause physical suffering and death, and economic costs in terms of lost labour and medical costs, it also costs in psychological terms. There are several ways in which women can suffer from psychological stress related to the HIV virus. Firstly, they may experience fear and concern of being infected with this virus from their husband or partner. Indian women have few opportunities to demand or request that their partner practice safe sex. There is little data or literature on this topic, but certainly Indian women face significant stress from their vulnerability to HIV. Researchers in the United States have recognised that spouses are confronted with considerable worries about whether they too will become ill if their partner has been diagnosed as HIV+ or as having AIDS (See Ankrah, 1993, Bor, Miller and Goldman, 1993, Dane and Miller, 1992, Kelly and St. Lawrence, 1988 and Black, 1993). This theory is further supported by a personal observation made while in Pune earlier this year. During an interview one young woman expressed serious concern over the fact that her husband, who is a long distance truck driver, may have the HIV virus and that she is unable to instigate measures of protection for herself. She fears not only that she will get AIDS, but that if she becomes ill her children may suffer as well, due to her inability to care and provide for them.

Women can be affected psychologically by HIV/AIDS in their role of caregiver. When family members fall ill, it is women who provide the nursing care and in the case of illness of the breadwinner, it is women who usually take over as providers of basic needs for themselves and other family members. Such women may face the fear of the death of their husband, the fear of becoming infected and feeling helpless, mental stress over the physical and psychological burden of care, and a sense of despondency and failure about the future (Bor, Miller and Goldman, 1993).

Feelings of alienation and isolation have been commonly reported by both those with AIDS and their caretakers. AIDS has a strong stigma attached to it and persons with the disease and their families may be shunned by the community. The stigma arises from AIDS and it's association with promiscuity, with sexual transmission, and with illicit drug taking. As AIDS is both fatal and largely untreatable other members of society may shun contact not only with AIDS sufferers but their families as well, for fear that they too might bring contagion (Conrad, 1986

Government and Community Support

Although Indian women do support each other, few formal support networks are in place to assist and provide support for women. Services aimed at providing help, guidance, and support for AIDS sufferers and their families in India appear to be fragmented and not as yet very well established. It would appear that most activities in this area are targeted toward so-called 'high risk' groups, i.e. prostitutes and IV drug users. During my field trip I could find no evidence of counselling services which were available to ordinary women and men, although NACO officials assured me that these services were in place.

An example of a community level service said to be available is NACO's Counselling training module. Developed in February, 1993, the module is to be used in training all categories of health and community workers in counselling for AIDS and STD's. Perhaps of more immediate benefit is NACO's Self-Learning Manual on HIV/AIDS for Counselling for Grassroots Workers. These training modules are to be disseminated through all programmes and institutions working in AIDS prevention and control in the country (NACO, 1994). Below is a list of NACO activities and plans for 1993/1994. While the industriousness of NACO is to be commended, interviews with a number of people involved with AIDS in India left me with the impression that at present, the government was focussing only on determining prevalence in 'high-risk' groups rather than on preventing HIV transmission in all sections of the community.

It is of concern to note that the Indian government does not have any social welfare or benefit system which can provide for those with HIV or AIDS (sickness benefits), nor does it have widows or sole parent pensions. Indian women already make up the majority of those living in poverty - if they contract HIV and subsequently fall ill, or if they lose their husband to AIDS how will they survive financially and socially? Charitable organisations, local, national and international, are already stretched in their efforts to provide food, shelter and counselling for India's poor and needy. Women who have needed help in the past have relied on family and friendship networks, and it is to these networks that Indian women must turn to in this epidemic.

NACO Activities and Plans for 1993/1994

A complete training module in AIDS case management with emphasis on counselling has been completed.

A training module and guide-lines for Primary Health Care Physicians is completed.

RAK College of Nursing in collaboration with NACO and WHO is completing a comprehensive training manual for Nurses which will be used in both pre-service and in-service training.

NACO has conducted 20 workshops in different Medical Colleges of the country and trained about 600 Professors, Assistant Professors and Lecturers on the clinical management and diagnosis of HIV/AIDS and basics of counselling.

The Christian Medical Association of India (CMAI) in collaboration with NACO and WHO, has trained 22 trainers of trainers in clinical management, diagnosis and counselling for HIV and AIDS. These trainers have received hands on training in Africa and have now trained 1200 District Medical Officers. When completed the programme will have trained District Medical Officers in all districts of the country.

Source: NACO, 1994

Family and Friendship Networks

Many observers maintain that the family represents the best vehicle for providing support and care to those affected by the epidemic (Danziger, 1994). The extended family and friendship network is already available as a major resource and is capable of sharing the burden and responsibility for the care of people with HIV/AIDS. Family links are tight and binding. In India, the extended family and friends may be the first point where women can seek comfort and solace when affected by HIV/AIDS. As recorded by Anderson, (1984), Indian women, especially rural women, maintain a strong sense of solidarity with each other. If problems become too much there is always family or friends to call upon to discuss and share the problems rather than brood in isolation.

Lack of Power in Relationships.

Early socialisation reinforced by prevailing norms during adulthood has taught women that they are subordinate to men (DeBruyn, 1992). A common representation of women is that they are sexually passive and that men are the sexual decision makers (Carovano and Schietinger, 1993). It is these norms and the sense of the husband's ownership of his wife that leaves women powerless to assert their sexual autonomy, much less their desires (Kurth, 1993 and Becktell, 1994). In many situations women have little, or no ability or opportunity to discuss or negotiate sexual relations with their husbands, nor to influence their husband's sexual behaviour outside of the relationship. Some husbands may expect sex in return for supporting the wife and any children they might have; as well, the wife's availability for unprotected sex may be viewed by some as a sacrosanct right of the husband (Black, 1992). It is noted however that these beliefs result from societal norms and as such may constrain behavioural change by men (Kurth, 1993). These constraints to free and open discussion of sexual matters operate as an invisible ally of HIV transmission (Black, 1992). In this way Indian women are further disadvantaged with regard to their ability to intervene and reduce their own risk of HIV infection (Bassett and Mhloyi, 1991). Apart from the 'power' aspect of sexual relations and cultural considerations, women's 'felt' inability to negotiate safer sex with men may result from their economic dependency and the fear of abandonment or divorce, and the consequent shame may act as a force in their reluctance to discuss sexual and health (HIV) concerns (Bhaiya and Kapur, 1994).

If women dare to suggest the using of condoms or the avoidance of risky sexual acts, they often encounter refusal on the part of their partner. They may be at risk of being beaten or raped if they insist on safer sex practices, which includes the use of condoms (Richardson, 1990). For many women faced with the risk of HIV infection on the one hand, and divorce, violence or dire poverty on the other, the choice becomes one of biological death or 'social death' (Bassett and Mhloyi, 1991). Similar comments are made by a number of writers - 'women, as subordinate members of most heterosexual relationships are unlikely to demand condom use of men they want to keep' (Bledsoe, 1991) and 'to ask for the use of condoms is to risk conflict; not to ask is to risk infection and death' (Ramalingaswami in Rossu, 1992). A woman's desire for her partner to use condoms may be interpreted as evidence of her extra marital affairs - she is accused of promiscuity or adultery or she is admitting to being infected with the HIV virus. Alternatively, it is taken that she is accusing her partner of infidelity, that he may be consorting with other women, or even that he is HIV+. For the woman, this is a no win situation (Van de Walle, 1990).

Three key pre-existing conditions necessary for the introduction of safer sex between couples have been identified. These are the relative sexual inequality between men and women; the impossibility of acknowledging other sex partners without seriously threatening a relationship; and no options other than motherhood existing to define self-identity or self-esteem for women (Aids Bureau, 1990). Until Indian women are able to negotiate safer sex practices with their partners they will remain open to the threat of transmission of the HIV virus.

INDIAN WOMEN'S KNOWLEDGE OF AIDS

Prior Research

This section contains a description of a questionnaire which sought to determine the prevailing knowledge, attitudes, perceptions and reactions (KAPR), of ordinary Indian women in Pune in regard to the topic of HIV/AIDS. Very little knowledge, attitude and perception (KAP) research seems to have been done in India in relation to HIV/AIDS. There were 2 such surveys available in 1996. These were the Gallup International Survey on attitudes towards AIDS, conducted in the period August, 1987 to February, 1988 using a sample size of 1,500; and a 1990 survey conducted in Calcutta which sought to assess the level of public knowledge and attitudes about AIDS among adults in Calcutta.

While these provided useful insights into attitudes and opinions about AIDS (Gallup Survey) and knowledge and attitudes (Calcutta survey) they both targeted high status women. In the Calcutta survey a highly educated sample group was used - 89% of 152 respondents had received high school or higher levels of education. Fully 60% of those surveyed had attended to university level. The results thus obtained represented would be likely to overestimate AIDS awareness among the general population (Porter, 1993). But neither of the above surveys were targeted at ordinary women. The questionnaire prepared for women and used at the National Workshop on Women STDs, HIV and AIDS conducted by Jagori was given only to the participants of the AIDS workshop (25 women in all). This questionnarie was used to assess the level of collective knowledge of the particpants, who by and large would be expected to have a higher than average knowledge of HIV/AIDS.

The Pune Questionaire

Through the use of the KAPR questionnaire developed for this chapter of Diet, Disease and Development, it was hoped to gain an understanding of the knowledge held by women in the Pune area about the subject of HIV/AIDS. The first part of the questionnaire sought to ascertain the degree of knowledge of the importance of the AIDS problem to the country, who was perceived as being at risk of contracting the HIV virus, and knowledge of transmission.

The second part of the questionnaire was aimed at revealing reactions towards, and perceptions of, those with HIV/AIDS and it was hoped that if any stigma was attached to HIV/AIDS by Indian women it would become apparent in responses to these questions. Some of the questions were designed to elicit responses on how ordinary Indian women might react to a person or people with HIV/AIDS. Although behaviour is very subjective, the seeking of likely behavioural responses was a useful goal. As yet, very few ordinary Indian people (women or men) would have come into contact with either HIV+ people or AIDS sufferers and knowledge gained through this questionnaire may be of benefit to others. While only a small sample size was used (total number of participants = 32), the data provide a useful initial insight into Indian women's knowledge of HIV/AIDS, their attitudes towards the disease and those who have AIDS, and their behavioural response to these who are seropositive or suffer from AIDS related illnesses.

Format and Administration

The questionnaire was designed as a structured interview tool. Fourteen of the total twenty-two questions required a simple Yes/No/Don't Know response. The last four questions sought demographic information from the respondents. Four base questions required a short answer response. These questions were used to prompt further discussion and comments.

The questionnaire was divided into two parts. The first section dealt with knowledge and attitude components. As suggested by Dane (1990) the first few questions dealt with the least threatening aspects of the HIV/AIDS topic. Respondents were asked "Is AIDS a major problem in India?' followed by a question asking where they had heard about AIDS.

Knowledge and attitude questions were interspersed throughout this first section with the last two questions being the most sensitive and to the point. Although the question 'Do condoms prevent AIDS?' would be considered fairly innocuous in Western societies (bear in mind that condoms are frequently advertised on television and in magazines in the West) this question was, in Indian society, considered invasive of privacy and dealt with a subject that was not usually spoken of outside of family and/or close friends.

Questions designed to reveal reactions and perceptions comprised the second part of the questionnaire. Once again less sensitive items were located at the beginning of the section. Three main questions were asked, the first seeking a response/reaction to the question 'How would you react if a leading public figure was diagnosed as having HIV/AIDS?' The last major question was to elicit a response to 'If a person in your family gets AIDS how would you react?' This question was considered culturally sensitive as most respondents were married women with a family.

Three main classes were established i.e. lower class, middle class and upper class. Further sub-classes were created within the main classes. The lower class was broken into 2 sub-classes -- lower- low class; and -- upper-low class. The same formula was applied to the middle class. For the upper class the only notation was - upper class, as few women interviewed belonged to this class. It was also found that a woman's appearance (e.g. quality and condition of her clothes; type (e.g. gold or silver) and quantity of jewellery worn; general physical condition and evidence of hard or domestic labour; and her demeanour; were generally excellent guide-lines to assigning class in India.

The questionnaire was given to a total of 53 women in the city of Pune in 1995. Marathi was the principal language used to question the respondents, however, on occasions Hindi was used. It should be noted that the respondents were only told that the questionnaire would seek information concerning their knowledge of AIDS, as it was felt that if advised that their attitudes, reactions and perception of AIDS were required, then respondents may give responses which they believed were sought. This could possibly result in biased results and not reflect their true beliefs, attitudes and perceptions of HIV/AIDS. The respondents were then advised that their responses to the questionnaire and their participation in such would remain confidential.

Importantly, the questionnaire was not self-administered. Thus, some of the answers could be open ended. Another factor influencing the decision to personally record all answers in full was the fact that some of the respondents were illiterate or semi-literate.

The locations in which the questionnaire was administered were quiet, private areas in which only the researcher, interpreter and respondent were located. Interviews were conducted at the Sasoon General Hospital women's wards, in private homes in a hutment area in Sangamvadi, near Poona University, and in a doctor's surgery located in the slum area of Yerwada.

QUESTIONAIRE RESULTS AND RECOMMENDATIONS

In this section, the results of the questionnaire are given and discussed. For ease of reading , this discussion is broken into four sections. As a number of women declined to be involved in the survey or withdrew part way though, a section is devoted to examining reasons for withdrawal and comments made by these women. The results of the survey are summarised and overall findings of both archival and field work given. The concluding sections look at the positive activities which are occurring in India in regard to women and the HIV/AIDS problems.

Results of a KAPR Questionnaire

A total of 54 women were approached. Thirty-two completed questionnaires were obtained; twenty-two women declined outright, or did not complete the questionnaire.

Demographic Data

One half of the questionnaires were completed by women judged to belong to the lower classes (16 of 32); 37.5% by women belonging to the middle classes (12 of 32); and only 12.5% by women from the upper classes (4 of 32). Most of the women interviewed were in the 17-40 year age group - almost 67% (21 of 32).

Knowledge Responses

Of the 32 respondents, 27 believed AIDS to be a major problem in India while 2 women felt that AIDS was not a problem, and three women stated that they didn't know. In all likelihood the majority of women who responded that AIDS was a major problem in India did so more on the basis of exposure to the word 'AIDS' (through media sources), than as a result of overall knowledge and assessment of the AIDS situation in India.

Television, newspapers and friends were the most commonly disclosed sources of information about AIDS, and were cited by 75%, 35% and 41% of respondents respectively. The predominance of television (TV) as a medium for AIDS awareness results primarily from a series of two advertisements on the Indian Government TV station - Doordashan. This television station reaches an estimated 84% of the Indian population (personal communication, 1995). Once again, it is only exposure to the word AIDS that is being acknowledged here. In one of the commercials, a person with AIDS is depicted in a hospital setting. Two medical staff are shown avoiding contact with this individual. An ordinary looking woman enters the scene, approaches and touches the AIDS sufferer. Voice-over supplied for this actor is, 'it is safe to touch someone with AIDS'. While efforts to reduce the stigma and fear which may be attached to AIDS are to be commended, it became apparent to me that little information about AIDS itself was provided in the media.

The common response indicating friends as source of information could be an area for concern. We are all aware of how information can be altered, added to, or distorted by the 'gossip mill' and one must wonder about the quality of information concerning AIDS that is being currently circulated amongst the general population, given the relatively low levels of literacy in India.

A number of respondents were unsure regarding the difference between HIV and AIDS - 37.5% (12 of 32), while 15.5% (5 of 32) didn't know. The 47% (15 of 32) who stated that they were aware of a difference may have been led by the question to some extent. Because two distinct terms were used, i.e. HIV and AIDS, and knowledge of a difference between the two was sought, it may be possible that respondents answered in the affirmative based more on their perception of the response sought than on their knowledge alone.

To the question 'Who can get AIDS?', 50% of interviewees (16 of 32) didn't know, a quarter (8 of 32) stated 'anyone'. Sex was mentioned in 12.5% of responses (4 of 32), e.g. 'people who do not take proper care while having sex' and 'sex with more than one person'. One respondent linked drugs to the risk of getting AIDS - e.g. 'because of the Brown Sugar, it got spread by sex'. The response 'prostitutes' was given by two women, two respondents stated 'men and women', while only one mentioned homosexuals.

Interestingly, this question revealed that there is apparently little blame or stigma attached to homosexuals and the spread of AIDS in India - in contrast to the situation found in the Western world. Homosexuality in Indian society is almost completely invisible, with few acknowledging publicly that it exists. Also of interest is the fact that most of the respondents who 'didn't know' were from the lower classes, although one upper class respondent was included in the 16 women who responded 'don't know'.

Surprisingly, given the above responses, 62.5% (20 of 32) respondents believed that children could get AIDS. No reason can be suggested for this result. The lack of knowledge of those at risk revealed by the former question (Who can get AIDS?), should have, in theory, been duplicated in this question. Only 4 respondents (12.5%) didn't know if children could get AIDS, and one quarter (8 of 32) said children were not at risk of contracting AIDS. One respondent in this group qualified her answer by the statement 'had not heard about it'. Responses to a number of questions regarding the transmission of AIDS are shown below.

When asked a specific question on 'How is AIDS spread', 44%, (14 of 32) of respondents replied that they did not know. This is in direct contrast to results obtained from questions listed in Table Seven. Many of those who 'didn't know' were from the lower classes. Responses from the other two classes, i.e. middle and upper classes, revealed some knowledge of various transmission methods. 53% of all respondents knew that condom use could prevent or decrease HIV/AIDS transmission, in contrast 32% responded that they were unaware of the link between condoms and reduced HIV/AIDS transmission.

Attitude Responses.

Two of the questions in the first section of the KAPR questionnaire were designed to obtain information on attitudes held towards persons with AIDS . The first sought an opinion as to whether people with AIDS or their families should receive assistance (e.g. medical, counselling, etc). Respondents overwhelmingly felt that assistance should be given - 91% (29 of 32). Of the remaining three respondents, two believed that assistance shouldn't be given and one was unsure.

The question 'Could AIDS ever affect you' received the most reaction. This question 'hit home', with many respondents seeming to adopt a defensive attitude (e.g. body language or querying how the question was relevant to them). Some respondents were offended that there was a suggestion that they could be affected by AIDS. This is linked to their perception that AIDS is a disease 'caught only by bad people'. Of the 32 women interviewed 4 (12.5%) didn't know if AIDS could ever affect them, with the remaining responses evenly distributed in the Yes/No categories. As the sensitivity of this question was recognised when designing the KAPR questionnaire, it was placed at the end of the first section.

Responses to Reaction and Perception Questions

The first question in this section required a short answer from the interviewees and is difficult to quantify. The words 'I would feel bad' were used in a number of responses. Discussion with my assistant after the interviews were completed revealed that in the Indian context, the word 'bad' was used to describe a range of emotions and feelings. My perception was that its usage in this context was to express sympathy and perhaps sadness (in that the person had the disease AIDS). Overall, most responses indicated sympathy for the person involved although several respondents stated that they would be disgusted. One respondent put it thus, 'only bad people get AIDS'. Responses from the next question supported the above findings with 75% of interviewees indicating they would have sympathy for the person involved. Of the remainder, 16% would not have sympathy and 9% didn't know.

'Feel bad' was used by a number of respondents to answer the question on their reaction to a friend being diagnosed as having HIV/AIDS. Responses also included 'very upset, shocked, very sad, and can't say'. It was obvious that most interviewees had given little thought to the fact that HIV/AIDS may affect people around them. In one way this is to be expected, given the reported low numbers of AIDS cases in India. However, the lack of concern revealed so clearly by this question may in itself lead to precautions not being taken by ordinary people.

Of those interviewed, 57% (18 of 32) would be disgusted if a friend was diagnosed as having HIV/AIDS. This response may be based on the generally held belief that AIDS is a disease which only promiscuous or 'bad' people get. Several comments from respondents demonstrated this belief - 'I would feel disgusted, I know how they get it"; 'Yes, man goes to different place and person'; and 'Yes, got it by sex with other ladies'. Of note, is the fact that the respondents appeared to relate this question to male friends as evidenced in two of the above comments. This may have important implications for AIDS awareness and preventative programmes. While 34% of the women (11 of 32) would not be disgusted, and almost three-quarters of those interviewed would not break the friendship, only 8 (25%) would feel both disgusted and break the friendship.

Designed to indicate whether any stigma is placed on those with AIDS, the question 'would you tell neighbours and other friends that the person has AIDS?' received 20 'no' responses (62.5% of respondents). This result can be interpreted in two ways. Firstly, that those interviewed attached stigma to AIDS and would not wish others in society to associate them with pearsons with AIDS, or secondly, it may be that the respondents are respecting the privacy of the friend with AIDS.

The question concerning disclosure of a family member's HIV+ status to either the household, or neighbours and friends received 20 (62.5%) 'yes' and 23 (72%) 'no' responses respectively, and mirrors the result achieved above. One comment by a respondent was that disclosure would be made to family only 'so that they could be careful'.

Finally, the last question to be analysed is, 'If a person in your family gets AIDS how would you react?'. This question was believed to be culturally sensitive and reactions from interviewees confirm this. Many hesitated before responding, with some stating that it couldn't happen to their family - 'no one of us can get it'. Others indicated support for the family member although they would be unhappy with the individual. A number responded that they would take the person to the doctor and/or help in any way they could. One of the respondents (from the lower classes), advised that 'he will be thrown out of the house or put in a hospital'. Another, that the family member would be put in hospital and given special treatment. 'Be rude with the person' was also given as a response to this question.

Reasons for Refusing Involvement in KAPR Questionnaire

Twenty-two women either declined outright to participate in this survey or withdrew part way through. The majority of women who declined were aged between 17 and 40 years of age and belonged to either the lower classes or in two cases, lower middle class. Most acknowledged that they had heard of AIDS but stated they didn't know anything about it. This was given as one reason for non-involvement in the survey. Several others commented that as only 'bad' people get AIDS or know about AIDS, they would have no knowledge of the topic. Several of the women took offence from the fact that anyone should presume they had knowledge of this disease - thus classing them as 'bad' people.

Television was usually cited as the medium of hearing about AIDS. A comment made by a number of women was, 'Yes, I've heard of this AIDS on the TV, but what is it?' This forces one to question the effectiveness of the Government initiated AIDS awareness campaigns. One woman continued saying, 'Seen it on TV, don't know what AIDS is, no one can tell us and we don't even talk about it'.

Participants withdrew principally at three points in the questionnaire. The question regarding methods of transmission was one of these points. It appeared that some women withdrew here because they had not realised or understood that the survey was about a sexually transmitted disease, even though they had been advised at the outset that the questionnaire concerned their knowledge of AIDS. One woman commented that she would not continue as AIDS is a dangerous disease and she didn't want to talk about it any more. Other women withdrew at the question 'Could AIDS ever affect you?' Most appeared uneasy when the AIDS issue was connected to friends or family. Perhaps it is a case of 'what I don't know about or think about can't hurt me'.

Summary of Results

By the end of the first interview I was astonished at the lack of knowledge concerning AIDS shown by the participant. This astonishment had turned to dismay and acceptance by the time I had spoken to the last participant. I had come to India from Australia, a country in which the majority of people have a satisfactory knowledge of HIV/AIDS and its methods of transmission. Perhaps somewhat naively, I had expected the women of India to have a base knowledge and awareness of AIDS. As the results of the KAPR questionnaire and the discussion concerning non-participants reveal, the women in this study do not have a 'working' knowledge of HIV/AIDS. In some cases the women knew nothing about AIDS - 'Excuse me, but what is this AIDS thing' (Singh, 1994). There are many millions of women in India that are at risk of contracting AIDS. These women are not just numbers - they are real and I have met with just a few of them. Their suffering will be real and prolonged. Yet they are, in many cases, unaware of the risk which they face each day.

Although the sample size was small, I believe that the results obtained are a good indicator of the level of understanding concerning HIV/AIDS held by ordinary Indian women. Most women have heard of the word 'AIDS', and a few were able to name methods of transmission of HIV. The fact that many women refused to participate in, or complete the questionnaire, indicates the sensitivity surrounding this issue. A stigma is attached to AIDS. As well as outright refusals, participants hesitated to acknowledge that they knew anything about AIDS for fear that they may be judged to be 'bad'.

In the Indian context, 'bad' is used in a number of ways. For example, it may be used to describe business or news, e.g. bad news; 'bad' may be used as a descriptor for feelings of unhappiness, sadness or illness. And while it may have been used in this context to answer some of the Reaction and Perception questions, when the women spoke of 'bad' people their intention was to label these people as immoral, evil or promiscuous. The linking of AIDS and 'bad' people results from the methods of transmission of the HIV virus, that is, sexually or by drug use, as well as the fact that prostitutes who are classed as 'bad' people, have very high rates of seropositivity compared to the rest of the Indian population.

No apparent stigma towards people with AIDS was disclosed by the survey responses. Many women stated that they would be disgusted if a friend was diagnosed as having AIDS, however, most women (75%) would not break the friendship. This indicates to me that in Indian society it is the disease which is stigmatised, not those who unfortunately contract the disease.

One final point to be made is that literacy and levels of education reached by the individual have a direct bearing on the amount and accuracy of knowledge held concerning HIV/AIDS. This finding is in line with that of Porter's survey conducted in Calcutta (see Porter, 1993). Several respondents said 'if you want to know about AIDS, ask the educated people, not us'.

Problems and Difficulties Encountered

Only one India specific article on the situation of ordinary Indian women and HIV/AIDS could be located - Porter's Calcutta study. The usefulness of his study was limited by the fact that those surveyed were in the higher class bracket of society and well educated. Further, no distinction was made between responses from men and women.

There have been a number of studies done in the U.S.A on AIDS, attitude and stigma. In the Western World this is fairly well researched with journal articles and books readily available. However, there are draw-backs in using these resources. The Western World are Pattern I countries, that is, transmission of AIDS is primarily through homosexual sex. Indeed, HIV/AIDS in the early days was known as the 'Gay Plague'. One still sees the remnants of this in the focus of some of these articles, e.g. Living with the Stigma of AIDS by Weitz, 1990. This article is on how bisexual and gay men with AIDS are affected by, and manage stigma. Although this article and many like it make for informative reading, not much could be gleaned from them for the Indian context of this study.

In a similar way, articles dealing with women and AIDS in the developed world could not be readily used. For instance, Ann Kurth's book Until the Cure promised to provide a wealth of material, but most of the information contained within the book could not be used because of its strong Western/U.S.A. orientation. Material relating to Africa was considered to be a likely source of information. Both India and the nations of Africa are classed as developing countries and, as Africa is further down the 'AIDS road' compared to India, research generated from Africa might prove useful. Not so. Difficulty in using material was experienced due to the different social and family systems found in the two regions.

Articles on the social impact of HIV/AIDS in developing countries provided some information. Articles which dealt with women and AIDS in developing countries proved to be the useful, e.g. DeBruyn and Danziger. Occasionally these articles contained snippets about India.

A further problem encountered during research was that of the conflicting nature of information concerning the number of AIDS cases and the prevalence of HIV seropositivity. It is evident that inaccuracies and under-reporting of AIDS cases and seropositivity have taken place in India. As a NACO official confided to me, there is no compulsion for the individual States and Territories to report AIDS data, nor is there any way the central office of NACO or any other Indian Government office can verify the data which is sent to them. The same official commented further, stating that he and most of his colleagues believe massive under-reporting of AIDS cases takes place. To say that since 1986, only 1139 individuals have contracted HIV and have subsequently developed AIDS, when the population of India is approximately 975 million, is ludicrous. A vast number of the population are not even aware of prevention methods, condoms are renowned for breaking, sex outside of marriage does occur, and commercial sex workers abound.

In the early stages of my research I obtained estimates of AIDS cases in India which ranged from 50 to 50,000 cases. These figures were sourced from articles available in Australia and I believe they reflect the low level of accurate information available in this country concerning AIDS in India. I also found statistics and estimates from the WHO and United Nations (UN), to be generally on the high side. To maintain regularity between sets of data, information supplied by NACO has been used throughout this chapter.

OVERALL FINDINGS

The general purpose of this chapter was to provide an overview of the present AIDS situation in India and to determine how cultural influences may place women at increased risk of contracting HIV/AIDS. I began with the question 'What impact does HIV/AIDS have on ordinary Indian women? As India is classed as a developing country with a patriarchal societal basis, in common with a number of African countries, I wondered if any aspects of Indian society increased women's risk of contracting HIV/AIDS. The lack of knowledge relating to AIDS displayed by ordinary women was astounding. The Indian Government has one of the world's larger programmes for AIDS education but when it comes to AIDS education for women, it is failing to achieve results. Because of cultural restrictions on open discussion of sexual matters, the AIDS message is not reaching ordinary Indian women. In their own groups women discuss matters of a sexual nature, but where do Indian women get accurate information on AIDS - a sexually transmitted disease?

Conversations with women in India indicate to me that younger women and girls are receiving little information about AIDS. A group of female friends of my assistant were asked if they discussed matters of sex with their daughters - the response, 'No, not at all'. When asked why, I was told that it just was not done, the daughters would find out for themselves when they were married. Sex education is uncommon in the Indian school system. I'm left wondering how younger females and for that matter all age groups will obtain the correct facts about AIDS.

Certainly the 'grapevine' is useful for disseminating information, but sometimes facts are distorted. Advertising by the government appears to be missing the mark; the Doordashan television commercials have already been discussed. While in New Delhi I noticed a bus shelter advertisement; it read 'AIDS, Everybody's concern - lets fight it together'. All very well, 'but do you know what AIDS is'? Singh, in her documentary Voiceless Victims, showed nurse assistants being asked a question about AIDS. Several of the women had 'blank' looks on their faces and one asked the others 'what is she talking about?'. I experienced similar scenarios during my survey.

In defence, the Indian government states that they have educational programmes in place. I was fortunate enough to obtain several examples of AIDS awareness programmes. These programmes are targeted to medical staff, general practitioners, IV drug users and commercial sex workers, and are distributed accordingly. But the fact is that awareness programmes have not spread to those who most need them - ordinary Indian women. Acknowledgment of this comes from Dr. Bisoi, State Aids Department, Orissa. He comments that 'because of society, we cannot tackle [women] directly now' (Singh, 1994). This crucial gap in AIDS consciousness has alarming implications for women, who are the potential and unwitting victims of AIDS.

In regard to broader and general objectives, India is the 'early' stages of the AIDS epidemic. Indian government statistics show a total of 1,139 AIDS cases. Seropositivity rates among selected surveillance groups is reported to be 7.29 per thousand. As at 31/5/95 a total of 2,507,908 persons had been tested for the HIV virus.

Some of the groups tested certainly are at greater risk of contracting the HIV virus than the majority of society, e.g. IV drug users, recipients of blood and/or blood products, commercial sex workers and homosexuals, but by testing members of known 'high risk' groups, is the Indian government obtaining a true indication of HIV infection in India? At this point of time there is no way to accurately determine the number of HIV+ individuals in Indian society. Mandatory mass testing is sometimes suggested as a way of first, determining the number of persons infected with the virus; and second, identifying those individuals who are HIV+. Debate has raged on this issue, with human rights activists arguing that such testing violates basic human rights, and the WHO asking what will mass testing achieve? At best, an HIV test result is a 'snapshot' of someone's infection status today, due to the 'window period' during which an infected person continues to test negative, but that does not alleviate human suffering (WHO, 1994).

Additionally, we believe that an undetermined number of deaths from AIDS related causes have gone unreported in India. Previous research undertaken by into maternal mortality in India revealed that the cause of death is not always correctly recorded. Again, there is no way to determine numbers accurately. What has been determined is that migrant workers and long distance truck drivers are important vectors of the HIV virus, together with the commercial sex workers they visit during their travels. In the north-east of India, IV drug users have been identified as the principal vectors of HIV.

The relatively low number of AIDS cases means that few ordinary Indians have yet come into contact with a known AIDS sufferer. Porter's Calcutta study revealed a high level of discrimination against infected individuals. The Pune survey disclosed little discrimination against, but attitudes of disgust towards, persons with AIDS. Because AIDS in India has a short history, we look to the African situation for information. In some areas of Africa up to 1/3 of the educated middle class have been infected by the HIV virus. Members of this class were being trained, or were trained, to supply the intellectual know-how and technical skills to help their countries in the development process. This resource is now threatened. Additionally, millions of children face the prospect of becoming, or are, orphans because of their parents death from AIDS. Predictions are that by the year 2000, there will be 590,000 maternal AIDS deaths in Africa leaving behind 5.5 million AIDS orphans (Museveni in Rossi, et.al., 1992).

Unlike Africa, where AIDS is now widespread, the AIDS epidemic in India can be moderated. HIV infection will eventu