A story of segregation and discrimination of children living with HIV in one Indian school

Amboli is a very small village in Surat, in Gujarat state, India. In most ways it is typical of rural Indian villages apart from one thing which I think makes it unique. In Amboli’s government school, 32 out of the 225 children registered to study there are living with HIV.

These children are all girls and are all orphans. They have lots of ambitions and the school’s staff are determined to give them the education they need to fulfil them, despite ongoing opposition and prejudice from the local community.

Muhammad Ibrahim, the school’s principal, says: “There were 225 students in this school but, once the HIV positive kids took admission here in 2013, all the other kids left the school. In Amboli village, most of the kids are not being allowed to come to the school by their parents. Mostly the parents are farmers and don’t want their children to study with these 32 kids living with HIV, as they are scared of their children getting infected. We now have only 32 children studying in this school.”

Dreams for the future

Laxmi (not her real name), aged 15, tells me her story: “My father was an auto rickshaw driver and he died because of AIDS when I was three years old. After a few years my mother also passed away because of this disease.

After my parents died, I started living with my grandmother. Once, I fell sick, and a doctor suggested I go for a blood test and then I came to know that I am HIV positive. After that I was not allowed to play with other children and couldn’t share my bed, clothes or utensils with anyone. A few days later my grandmother dropped me to Janani Dham [a shelter home for orphans].

I don’t know much about this disease but I know that it spreads through blood, not by playing, eating or sitting together. I am fine and healthy and I love to play with dolls and love to watch TV in the hostel, and movies too. I want to grow up fast and I will do a job to achieve my dreams – a big house, a car and a bike.”

Villagers’ fears

Laxmi and her classmates were admitted to the school after Gujarat State Network of People Living with HIV/AIDS fought for their right to receive an education, lobbying the local government and educating the principal and teachers at the school about HIV. The children’s health status was initially kept confidential and only the school’s principal was informed. Network staff do not know how the information was leaked to parents.

When the villagers first took their children out of the school, the district collector, local non-governmental organisations, panchayat (village elders) and health officers held a meeting with them to discuss this issue. After the meeting, things improved and the children started learning together again. But before long, a few parents started raising objections again. As a result, all the HIV negative children were once again withdrawn.

Ramlal, one of the parents, says: “The villagers fear that their children are at risk if they go to school with HIV positive students. Children fight with each other, and even bite at times, and it is not possible to keep a constant watch over them.”

Natubhai, another parent, admits he didn’t know much about HIV and says he is afraid his children will contract the virus by playing or eating with the children living with HIV. “I don’t send my boys to the school because of the HIV positive children there,” he says.

Attempts to educate villagers

Local government officials have taken a firm stand and say that they will not discriminate against the children because of their status. They are trying to educate the villagers with the help of doctors and HIV organisations. District collector Jayprakash Shivhare says: “These villagers do not have enough information about HIV and AIDS and we are trying hard to convince them. Doctors are also trying their level best to educate the villagers. It will take time but we are sure we will convince the parents.”

Each year, the school celebrates Independence Day on 15 August with the villagers. Sadly in 2014, the villagers choose to boycott the celebration. Not a single villager was present on the campus as the school principal, along with the teachers and 32 students unfurled the national flag, sang the national anthem and distributed sweets.

The school continues to run, attended just by the children living with HIV. It is a strong and principled stand and the teachers and principal are giving 100 per cent to make sure the girls receive the education and support they deserve.

Ramesh Patel, science teacher, says: “The school has given instruction to the teachers to handle kids carefully. The children take a heavy dose of medicine and some of them feel drowsy sometimes. These kids are very brave and they know about their disease. They don’t hide it.”

We must talk about HIV

Around 2.39 million people in India are living with HIV and, according to UNICEF, this includes around 220,000 children. In India we are still not very vocal about sex education, including issues like HIV, testing and treatment. Talking about sex is still taboo in this country, especially in hard-to-reach rural villages like Amboli. This automatically increases stigma, as people just aren’t aware of the issues around HIV and how it is transmitted.

On a personal level, understand the fear that people have inside which stops them going for testing. When I tested positive at eighteen, my T-cell count was already quite low and I’m sure I must have been HIV positive for a while.

I’m worried about the continuing lack of awareness and social stigma when it comes to getting a simple HIV test done. People are either not aware of the testing centres, or are too ashamed or scared to go to them. There is a lack of sex education in schools and adolescents don’t get much information about safe sex practices. If an adolescent is confused about sex, or about his sexual identity, he doesn’t have right to go for HIV testing or talk about these issues with a counsellor, doctor or community-based organisation without parental consent.

In the 21st century, when people are exploring space, why is it still so difficult to talk about HIV? We need to think about our adolescents, who are the future of the nation. We should give them basic freedoms in their lives and allow them to take decisions about issues which affect them without any hesitation. We must follow the example of Amboli’s teachers and continue working towards change, fighting narrow-minded attitudes and ignorance.

Gautam lives in India and is a member of the Key Correspondents network which focuses on marginalised groups affected by HIV, to report the health and human rights stories that matter to them. The network is supported by the International HIV/AIDS Alliance.

Click here to find out more about “All In”, a new intiative from UNAIDS to fight HIV in adolescents.

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