Without My Consent — Women and HIV-Related Stigma in India
“I used to watch a serial on TV about AIDS. The woman got it from her husband, and when he died they [in-laws] threw her out of the house. This happens in real life.”
“Men don’t carry condoms in their pockets. And even if he has one, he won’t use it… When he wants to do it, he just tells me to come aside.”
(March 2003) Both are voices of women in Delhi, but they could be from anywhere in this country of 1 billion people. For millions of Indian women, sexual intercourse is not a question of choice but rather one of survival and duty. Married before she has grown beyond adolescence, her fertility and her relationship to her husband are often the source of an Indian woman’s social identity, notes the study Living Under a Shadow: Gender and HIV/AIDS in Delhi.
Focus on Social Inequalities Is Key
Sonam Rana, regional program coordinator of the United Nations Development Programme’s HIV and Development Programme, sees the HIV/AIDS epidemic in India as inextricably tied to the social and cultural values and economic relationships between men and women and within communities. While social inequalities facilitate its spread in the country, the virus, in turn, reflects and reinforces these inequalities. Women are the least powerful because Indian society praises patriarchy and male sexuality and mourns the births of daughters. (The Census of India 2001 highlighted a worsening sex ratio of 933 females to 1,000 males.) In addition, there is an absence of choice at the individual and systemic levels, whether it is the choice to use a condom or even to have sex.
In the last few years, prevention experts have shifted from looking at the HIV/AIDS epidemic solely as a health issue to focusing on other factors that increase vulnerability to infection. For women, low economic and social status, abuse and violence, as well as limited legal and social protection increase their vulnerability to HIV/AIDS.
Awareness of HIV/AIDS Low
The National AIDS Control Organisation (NACO), which was set up in 1992 to develop a multisectoral program for HIV/AIDS prevention, estimates that nearly 4 million people were living with the virus by March 2002. But this is a silent epidemic. According to UNAIDS, 95 percent of Indians with HIV do not know they have the virus, which may also be masked by tuberculosis and other opportunistic infections. In addition, fear of hostile reactions from the community and at the workplace — in the absence of protective policies — and a general lack of knowledge drive the virus further underground. (See Box 1, “Breaking the Silence.”)
Knowledge of HIV/AIDS continues to be surprisingly low. The National Family Health Survey, 1998-99 shows that only four out of 10 women of reproductive age have heard of AIDS. Awareness is much lower among rural and less educated women. Only 18 percent of illiterate women have heard of AIDS, compared with 92 percent of women who had at least completed high school.
Among Women in India Who Have Heard of AIDS, Percent Who Do Not Know Any Way to Avoid Infection
Source: National Family Health Survey, 1998-99.
Even among those who have heard about HIV/AIDS, awareness of how to prevent infection is low. Nearly all respondents in four community-based studies on gender and HIV/AIDS sponsored by the United Nations Development Fund for Women (UNIFEM) in 2000 viewed the condom primarily as a contraceptive device. Conducted in two Indian cities, Pune and Delhi, and two states, Assam and Andhra Pradesh, the study showed that the most common perceptions were “How can you tell him to use a condom if you are pregnant?” and “When I am using a contraceptive, there is no need for my husband to use anything.”
Burdens of Blame and Care Fall on Women
Most Indians refuse to believe that heterosexual transmission accounts for 80 percent of infections in India. The virus has expanded the boundaries of high-risk groups to include adolescent girls (married and single); married women of reproductive age; sexually active single women; sex workers; college and university students; pregnant women; and women survivors of sexual abuse and rape. Women constitute 25 percent of known AIDS cases in the country, according to NACO. Data indicate that seven of 10 women affected by HIV are from poor rural and poor urban communities.
Yet recent mortality and morbidity data indicate that women remain providers and not receivers of health care. Shalini Bharat of the Tata Institute of Social Sciences (TISS) in Mumbai revealed in a 2001 study that while the majority of those who shared their HIV status with their families were looked after by family members, it was largely men who received such care.
Women with HIV are subjected to various forms of violence and discrimination based on gender. They could be refused shelter, denied a share of household property, refused access to treatment and care, or blamed for a husband’s HIV diagnosis.
“When my in-laws got to know about my husband’s HIV status they immediately blamed me for giving him the infection,” said a 23-year-old woman.
In cases where a man has admitted he had sexual relations with sex workers, the burden of blame still falls on the wife for failing to “satisfy” her husband, according to the 1996 household study, Facing the Challenge. Women with the virus may also be physically abused. Deaths due to injury and sexual violence of women with HIV are on the increase. A 1997 study by K. Sathiamoorthy and Suniti Solomon showed 48.7 percent of women living with HIV experienced violence in the home.
Dealing With Stigma in Health Care Settings
Perhaps the most conspicuous context for HIV/AIDS-related discrimination, stigmatization, and denial is the health care sector in India, whether public or private.
“In private hospitals, the news of HIV-positive patients, once detected, is closely guarded and the patient is conveniently transferred to [a government hospital],” says a surgeon at a government hospital. And, according to a physician at a private hospital in Mumbai, “We are not bound by any rule to give treatment to HIV-positive patients … I screen every patient who is referred for diagnosis and do not admit those who are HIV-positive.”
NACO policy for India encourages counseling and discourages testing at the workplace. Yet many with the virus say they have been tested for HIV in a routine manner, without their consent. “I accidentally discovered my HIV status in 1996 when I went for an antenatal checkup. Even the testing was done without my consent,” says a nurse with HIV.
As noted by Facing the Challenge, many infected people trace some of their AIDS-related fear, anxiety, and denial to their traumatic experiences in health care settings. While a doctor is sworn to notify only the patient of his or her status, the confidentiality of HIV test reports appears to be strictly observed only for the educated and the relatively well-off.
“When a young woman [from a low-income group] who is first-time pregnant is found to be HIV-positive, we ask her to call her mother-in-law. We explain the report to the mother-in-law,” admits a gynecologist at a private hospital in Mumbai.
There seems to be no concern at all on the doctor’s part that often the relationship most strained by HIV is that between a woman and her parents-in-law. While a woman is expected to care for her husband through his illness, as a widow, she can expect no help from her in-laws.
“After the death of my son-in-law, my daughter was sent back by her in-laws … I told them that my daughter got the infection from their son,” explains one mother.
Breaking Down Barriers to Prevention and Care
Health officials in India recognize the need to frame strategies to address women’s health care, including HIV vulnerabilities, in the context of rights. The issues they seek to resolve include confidentiality, partner notification, and free and informed consent — all difficult issues for women who risk violence and neglect if their HIV status is disclosed. Officials also recognize the need to introduce strategies to reduce stereotyping and discriminatory attitudes directed at people with the virus and to increase gender sensitivity among health planners, policymakers, the judiciary, and others involved in HIV/AIDS prevention and care work.
Individuals and groups are trying to bring down barriers to HIV/AIDS programs in vulnerable communities across India. For five years, Naz Foundation (India) Trust, which received the 2001 Commonwealth Award for Action on HIV/AIDS, worked closely with women in Mohammadpur, a working-class community wedged between middle-class neighborhoods in southern Delhi. The organization interacted with the women on issues of gender and sexuality — issues that cause a high degree of shame and secrecy in India. Naz’s weekly interactions with the women, who would not otherwise be allowed to do anything without the permission of the men in their families, was through Prabha Tara, a nongovernmental organization (NGO) that works in Mohammadpur.
“We identified with the women as trainers, as sisters, as friends, as doctors, and as women,” says Naz’s Gunjan Sharma.
Another NGO has emerged as a model for HIV prevention, treatment, and care. People with the virus and their families from all over southern India travel to Chennai (formerly Madras) to the YRG Centre for AIDS Research and Education (YRG CARE), an organization that provides the most comprehensive prevention, care, treatment, and support services in India. Over the last 10 years, YRG CARE has acquired a reputation for affordable, high-quality, confidential care that not only serves the changing needs of clients with HIV through all stages of disease and treatment but also addresses the prevention and support needs of families and others affected by HIV/AIDS. The organization also fulfills a larger role within the community of building prevention awareness, offering voluntary counseling and testing, promoting safe and responsible sexual behavior, reducing stigmatizing attitudes about people with the virus, and advocating policies that protect the rights of those affected by the epidemic. YRG CARE recently began offering antiretroviral treatment to clients who can afford it.
“Time and time again, we’d find that something critically important that our clients needed was missing or that they avoided existing services because of fear of stigmatization or public disclosure of their infection,” says Dr. Solomon, YRG CARE’s founder and director. “As we learned more about our clients’ vulnerabilities, experiences, and needs, we expanded and improved our services and developed a referral system to trusted practitioners for services we didn’t cover.”
An assessment conducted in April 2000 gave top marks to staff at YRG CARE for being nonstigmatizing and respectful, and nearly all 300 respondents said they considered the counseling services as important as medical care. As one client put it, “There was encouragement from the doctor and counselor to think of myself as normal.” Researchers also pointed out that a positive outcome of the YRG CARE model was that more people, especially women, were being reached. Pregnant women who test positive are offered the low-cost drugs to stop HIV transmission to the child.
Ann Ninan is a freelance writer based in New Delhi.
Shalini Bharat, Facing the Challenge: Household and Community Response to HIV/AIDS in Mumbai, India (Geneva: WHO 1996).
Shalini Bharat, India: HIV and AIDS-related Discrimination, Stigmatization and Denial (Geneva: UNAIDS, 2001).
Community-based Studies on Gender & HIV/AIDS (New Delhi: UNIFEM South Asia Regional Office, 2000).
Horizons Program, “Care and Support in India: Special Focus on YRG CARE,” Horizons Report (Washington, DC: Population Council, December 2002).
Anita Khemka, “People Plus,” photography exhibition sponsored by UNAIDS (New Delhi, 2001).
Swapna Mukhopadhyay et al., Living Under a Shadow: Gender and HIV/AIDS in Delhi (Delhi: Institute of Social Studies Trust, 2001).
National Consultation on Women, “Positive Faces and Voices of Women from India,” workshop, Chennai, India, March 8-11, 2002.
National Conference on Human Rights and HIV/AIDS, National Human Rights Commission (2002).
K. Sathiamoorthy and Suniti Solomon, “Socio-economic Realities of Living with HIV,” in Socio-economic Implications of the Epidemic, ed. Peter Godwin (New Delhi: United Nations Development Program, Asia-Pacific Office, May 1997).
Suniti Solomon and S. Anuradha, “Trend of HIV Infections in Patients with Pulmonary Tuberculosis in South India,” Tubercle and Lung Disease 76 (1995): 17-19.
United Nations Development Fund for Women (UNIFEM), Reducing Vulnerabilities of Young Women to STI/HIV/AIDS (New York: UNIFEM, 2002).
For More Information
National AIDS Control Organisation, India www.naco.nic.in
Horizons Project, Washington, DC www.popcouncil.org/horizons
The report “Care and Support in India: Special Focus on YRG CARE” www.popcouncil.org/horizons/newsletter/horizons(5).html
Joint United Nations Programme on HIV/AIDS www.unaids.org
Institute of Social Studies Trust, New Delhi www.isst-india.org
YouandAIDS, HIV/AIDS portal for South and Northeast Asia (UNAIDS) www.youandaids.org
The Lawyers Collective, HIV/AIDS Unit, India www.lawyerscollective.org
Y.R.G. CARE: Centre for AIDS Research and Education www.yrgcare.org/
Shalini Bharat, Tata Institute of Social Sciences (TISS), Mumbai email@example.com
Tamil Nadu State AIDS Control Society http://tnaids.tn.nic.in
Breaking the Silence
From a position of denial that HIV/AIDS could be a problem in India, Prime Minister Atal Bihari Vajpayee said in a December 1998 speech, “HIV/AIDS today is the most serious public health problem facing India.” While three states — Maharashtra, Tamil Nadu, and Manipur — lead in infection rates, cases have been reported in almost every Indian state. The virus is no longer confined to urban centers but is rapidly spreading to the rural areas, moving from those practicing high-risk behavior to the general population in some regions. Various studies have found high levels of HIV/AIDS among selected groups of women who have remained monogamous in their marriages. In Pune (Maharashtra state), one study showed that of the 400 women visiting clinics for sexually transmitted infections (STIs), 93 percent were married and 91 percent had sex with their husbands only. All had at least one STI and 13.6 percent tested positive for HIV, according to the 1999 UNAIDS report, AIDS: 5 Years Since ICPD. The prevalence pattern is shifting toward women and young people, resulting in an increase of mother-to-child transmission and pediatric HIV infection. Women account for 25 percent of new infections, according to the UNAIDS India Annual Report 2000.