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Living in India as a woman with HIV

Updated: Apr 30, 2020

HIV womens rights india stigma

Imagine being born with HIV and having a family who punished you for it. The disease was contracted by your father, passed on to your mother and then to you. You were caught in a cycle of vulnerability, and you’ll feel the repercussions for most of your life; carrying the weight of the prejudice, the rejection, and the differential treatment on your shoulders, wherever you go. You had no voice, and you had no choice, but you live with the stigma. This is the reality for almost a million women in India. Even today, in an era where stereotypes about HIV have - for the most part - been debunked in the west, families in developing countries still turn their back on women who test positive for the disease. These women are doubly disadvantaged because of their gender and their condition, entangled in a web of prejudice with overlapping experiences. As a woman, you face an onslaught of societal norms that pressure you into early marriage, encourage submissive behaviour and reduce your life’s purpose to spousal devotion. As a HIV positive woman, your gender and condition coalesce to form a storm of stigma that shames you for failing to fulfil your gender roles, and shames you for failing to practice effective HIV-preventative measures.

The reality is much more complex. Many women don't know how to protect themselves. Some men don't care to. But it isn't just about a lack of education or a sense of responsibility. There is a network of issues at work that are firmly embedded in the structure of society. From predominately male-perpetrated adultery, to how their inferior position in social hierarchies puts women at a higher risk of domestic violence, many women are crushed under a system of power that favours men regardless of their actions. One that vilifies women and sanctions men for contracting the same disease – even if the man is responsible for passing it on.

A young woman, Jyoti, whose real name we’re omitting to protect her privacy, spoke frankly with us about why her family cut ties with her. Her crime? Being born with HIV. “They don’t even speak to us. My brother is not HIV positive but my cousins aren’t allowed to play with him. My relatives told the neighbours that my mother was responsible for giving HIV to my father. That because of her, he died from AIDS. Now that I’m older, I can speak up for my mother and defend her. For years, she suffered abuse from them. We are isolated from our relatives and within the local community.” Even though it was in fact her father who carried the seed of HIV, the family blamed her mother and the mistreatment was unrelenting. Not only were they cut off from communication, they were also cut off from a network of support. Struggling for food, living in isolation and facing waves of daily abuse from her own family, she felt desolate: “Our condition was really bad, I can’t explain it, it makes me feel upset when I remember how bad it was”.

When we first met her and her mother, both needed urgent medical treatment - especially her mother who needed blood transfusion - but they couldn’t afford the cost of travelling to the hospital, or the cost of the transfusion itself. We lifted this financial burden and put them on a path to recovery, but our efforts to stitch the family relationship back together weren’t as successful as we’d hoped.

“They have talked to our relatives and made it clear that if they continue abusing us, they will file a police complaint. This has helped a bit, but the family still hate us. They are however afraid of the support we have from WIN, which gives us strength.”

Even though the family haven’t reconciled, now that the abuse has ceased, Jyoti can start to focus on her studies, without having to worry about medical bills. With our support, she’s free to pursue her dreams of becoming a chartered accountant, and we’ll be backing her every step of the way by funding her living costs and tuition fees. Living with HIV in countries like India is like living with a badge of shame that’s been tattooed onto your skin without your consent. Thousands of women contract HIV through no fault of their own, yet they’re the ones who are punished for it. Society may try to drag HIV sufferers down, but we’ll be there to lift them up where we can by giving them the opportunity to believe in a better future.

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