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Enlivening the Faith:
My Journey with Women Living with HIV/AIDS

by Anshi (Sheila) Zachariah

Anshi (Sheila) Zachariah currently works as the Programme Officer at the AIDS Desk, of the National Lutheran Health and Medical Board/UELCI, India

HIV/AIDS is a pandemic that has spread over the world within a short span of time. It has shaken the socio-economic political and cultural foundations of nations like India and South Africa. Currently, nearly 40 million are living with HIV/AIDS all over the world. According to a 2006 UNAIDS statistics about 5.7 million people were living in India with HIV/AIDS. That means India has the largest number of people living with HIV/AIDS than any other country in the world. In 2007, using a more effective surveillance system, UNAIDS and NACO came out with a new estimate of between 2 million and 3.6 million people living with HIV in India. This revised estimate puts India behind South Africa and Nigeria in terms of the number of people living with HIV/AIDS.

Unlike other diseases, those who are affected by HIV/AIDS are subjected to go through stigma and discrimination. This is due to its sexual connotation. Religion plays a major role in reinforcing this moralistic perception of sexuality. Most of the religious leaders look at HIV/AIDS only as a sexual aberration, and hence they come out with moralistic prescriptions such as controlling your sexuality, abstinence, purity, monogamy, and sex only after marriage and the like. This ignores the complex reality of gender, poverty, and related issues. It is high time for us to understand HIV/AIDS as a larger and complex issue, than an issue of sexual immorality.

As a global pandemic, HIV/AIDS has spread far and wide affecting not only the high-risk groups, but also every one. The infected are no longer ‘out there’, but they are very much among us. However, it affects particularly socially disadvantaged people, who face poverty, gender inequality, violence, caste based discrimination, discrimination on the basis of sexual orientation etc. In the struggle for livelihood for survival in our globalized economy, the rural and urban poor end up in unsafe places of work. Long hours of work, separation from family for work, lack of information, lack of protection, and sexual and psychological violence at work place will all contribute to their vulnerability.

HIV/AIDS and Women

Women are the worst affected victims of HIV/AIDS. Economic dependency and the fear of violence compel women to consent for unprotected sex both within the marriage and elsewhere. There are several cases of family members forcing and initiating poor girls and women into sex work and trafficking. In some other cases women chose sex work, as there is no other way to survive. Women are sexually exploited at their work places, where they undergo both psychological and physical abuse. In Export Processing Zones, women/young girls are employed for cheap labor with long hours of work. Abuse and sexual violence are common there. In all these cases, women are helpless and have absolutely no control over their bodies or lives.

It is a shameful tragedy that the “sacred” institution of marriage has become one of the major causes that spread HIV infection. In the Indian traditional setting, women are bound to be virtuous mothers/wives, serving, bearing, forgiving and acting according to the demands of their husband. Women cannot insist on safe sex within the marital relationship, and according to recent researches, majority of the women are infected by their husbands. Our moralistic perception of the HIV/AIDS pandemic is yet to recognize this tragic reality.

In India it is a common practice that women do not have property rights. In our work among people living with HIV/AIDS, we have come across several cases where women were thrown out of the house after the husband’s death. In several cases, these women were infected through their husbands who had multiple partners. But the women faithfully stayed in the relationship without knowing about their husbands’ extra-marital relationships. Recently when a man was tested HIV positive, his family forced his wife to agree for divorce. They also forced her to sign a legal document giving up her claim on his property, so that after the death of the husband, his family gets the rights over the property. She was blamed for infecting her husband. In fact this woman was infected through her husband, and they did not have any children. This is not an isolated story.

Our commitment to heal the world infected with HIV/AIDS demands us to critically evaluate our perverted understanding of sexuality. We stereotype sex as bad, and therefore, it should be repressed. This negative understanding orients us to deal with sexuality in a submissive and secret manner. This leads to the repression of our sexuality, resulting in perverted and abusive expressions. Sex and sexuality should be understood as a divine gift and it should be celebrated with a sense of responsibility and beauty. It is also important to acknowledge and affirm diverse forms of sexual orientations, and say ‘no’ to all manifestations of homophobic demonizations that impose heterosexuality as the divinely legitimized norm.

HIV/AIDS in a Globalised World

Globalization and neo-liberal economic policies play a decisive role in the spread of the HIV/AIDS pandemic. Government of India, in 2005, had incorporated public safeguards for safe, effective, and affordable medicines for Indian citizens and all other people around the world, in compliance with the Trade Related aspects of Intellectual Property Rights agreement (TRIPS). However, Novartis, a multinational pharmaceutical company, has taken the Government of India to the court challenging these safeguards and forced to change our patent law. Millions of people around the world, particularly from the third world country, today rely on affordable generic medicines produced in India. Thanks to the protests by the Patients and public health groups across the world, including the networks of people living with HIV/AIDS and church based organizations, Novartis lost the case. If Novartis would have won the case, it would have severely affected access to essential drugs for diseases such as AIDS, cancer, asthma, mental illness, heart disease, and others. This is just one example of the way globalization perpetuates the spread of HIV and the misery of the common people.

There is also a nexus between the Pharmaceutical companies around the world. They want to maximize their profit over the HIV/AIDS and want to have their monopoly over the drugs that are manufactured to restrict this pandemic. “the real issue is that the major pharmaceutical companies still maintain control over who can manufacture their patented drugs and how much they cost”. Developing countries have not really been allowed in any major way to issue “compulsory licenses that would allow generic drug manufacturers to create cheap and ubiquitous versions of AIDS drugs” with which “developing nations would drive down the cost of raw materials, increase competition and make the drugs more widely available.”

Globalization here negates our fundamental right to life and sound health.

The Church and HIV/AIDS

The Church, as the body of Christ, is a community called out to continue the ministry of compassionate justice and healing. The Church can no longer remain as a silent spectator when the body of Christ is infected with HIV/AIDS (the marginalized people are the body of Christ). It is the Church’s mission to be a healing presence in our communities. Jesus’ life was a healing presence. He healed the sick, preached good news to the poor, set free the prisoners, recovered sight for the blind, and liberated the oppressed. He questioned the stigma, social ostracization and exclusion of the people who have been branded as unclean. He ate with them, spent time in their houses and accepted them as normal human beings. The Church, which has become part of the oppressive structures that have ‘infected’ the people must work towards creating a new ministry of healing and empowerment.

Life is a precious gift of God, and none of us are in control of our lives. Some die very young, some await their death for years, bed ridden! Life goes on for each one of us in spite of such uncertainties. However, the People living with HIV/AIDS are forced to think of death more than life, thanks to the stigma and discrimination that we cause to them. In such circumstances, where is the Church in their experiences of utter God-forsakenness? Where is the body of Christ when their bodies are being discriminated and rejected?

My faith journey amidst the “positive” people

My association with women living with HIV/AIDS has challenged my faith and spirituality. They are my colleagues and my friends. They are no different then us. They do have their family, children, they work, they sing, they dance, they cry, they laugh. They even counsel me in my moments of distress and anxiety. They are just like us who struggle, enjoy, and celebrate life in the midst of mixed experiences.

They share a deep spirituality. I am humbled by the strong faith that they nurtured through their everyday struggle to live. They experience the companionship of Jesus in their lives, which empowers them to lead a “positive” life. They are in constant conversation with God about their experiences. They do not want to see problems in life as struggles but as different experiences in life. They strongly believe that nothing happens without God’s knowledge. They have also shared their experience of getting the strength from God to face challenges of life. They don’t have self-pity and hence they don’t sit and regret over their life experiences. They are determined to live a “positive” life gathering strength and energy from God and from their communities on a daily basis. They praise God for guiding them each day. Their faith in God, who is a constant presence in their lives, enables them not to get worried about the uncertainty of future.

I find in their communities a spirituality of companionship and reconciliation. They live and celebrate life with a deep relationship with God. There are times of complaints, regrets, hopelessness, etc. But they are determined to overcome it and to embrace a positive understanding of life. They face life with hope and enthusiasm. They want to live life with a positive outlook. Most of the women that I have come across are wives, infected through unprotected sex with their husbands. Are they angry at their husbands? Yes, they were. In their relationship with God, they got the strength to reconcile with their spouses. That does not mean that they reconciled with the causes that continue to spread the pandemic to innocent people. They are angry at all these causes. Through their Positive Networks they are venting out their anger by creating awareness in the community, fighting against trafficking and domestic violence, and resisting the neo-liberal invasion into the field of health care. But they are reconciled with themselves and their fellow victims who happened to be the cause for their tragedy. This is the “positive” spirituality of the “positive” people, and this is how they enliven their faith.

Conclusion

I would like to conclude this reflection with the vision of the Positive Women Network. “Our Vision is that women living with HIV/AIDS and their children should have the absolute right to live a life of dignity, in an environment free of any stigma and discrimination and that we succeed in mainstreaming our concerns to enable women to access their fundamental constitutional rights, especially the rights to equality, health, education, livelihood, to form association, enhance participation and be protected from violations and neglect.”