Mumbai HIV Awareness

On World AIDS Day in a poor suburb of Mumbai a new Karuna-funded HIV/AIDS training programme gets underway. The outreach project developed by the Bahujan Hitay charity runs a mix of awareness-raising campaigns, training workshops and individual counselling for HIV/AIDS sufferers.

Here, teenagers from poor backgrounds are recruited as peer group leaders who can explain the facts about HIV/AIDS to a new generation. This is critical in an environment where misinformation is widespread, and literacy levels are low. So far, over a hundred people have attended the one-day training programme, with eleven completing a full fortnight course.

HIV/AIDS thrives on bigotry, secrecy and poverty. It’s hardest to halt when they coalesce, as they conspire to do in Mumbai’s huge slums. It takes a co-ordinated effort of education, health care and counselling to reach people isolated by HIV infection.

Sunita Parmar is thirty. After marriage she moved to her husband’s family in a Mumbai slum colony at Tagore Nagar. Her back door swings directly onto an open sewer. No water supply is available but unlike many, they had a room to themselves which was their own home. Soon she had two boys, Sandeep and Praveen, but her husband provided little for the household.

Since the HIV/AIDS project started a year ago, Sanjeev an HIV counsellor has regularly visited Sunita. Support came just in time. Sunita describes herself as becoming increasingly desperate when her illness was compounded by persecution. But with steady counselling support she’s now able to tell her story.

“After a while my husband kept getting ill with TB, but he never fully recovered. Eventually the hospital suggested an HIV test, which we didn’t think about. But when it came back positive, we were all shocked.”

He died shortly afterwards in much pain, leaving Sunita with no income. But shock quickly turned to blame when her husband’s family closed ranks to scapegoat Sunita for the infection.

Sunita was gradually ostracised. Meanwhile her sons, Sandeep now aged 7 and Praveen now 4, both fell sick. When their health faltered, further HIV tests were ordered. This time all three tested positive.

“The news was devastating” Sunita says. “I felt so betrayed by my husband. Remember I had nursed him through his illness so I thought ‘we all have this ahead of us’”.

But other problems struck first. Instead of supporting her, her in-laws set about evicting her. “Suddenly we were like pariahs. None of my husband’s family would talk to me. My children were shunned and not allowed to play with their cousins. Then they tried to drive us all out of our home”.

The stress on Sunita became unbearable since her hut is sandwiched between those of her brothers-in-law. Tensions climaxed one night when Sunita was driven into one of the main slum alleys. There, her brothers-in-law formed a mob that denounced her as a prostitute. “They threw stones and rocks at me – even pulling my sari so that I was unclothed” she says.

At that point local women intervened. Their actions probably saved Sunita’s life. “That night I managed to run away, but we had no where to go. I ended up on the railway station. It was desperate. Thinking about the illness that lies ahead for me and my sons, I wondered if the best thing that I could do would be to throw all of us in front of a train”.

Instead, with great courage and strength of character, she managed to make a statement to local police and face down her husband’s family. Since then, the situation has settled a little and Sunita continues life in her old home.

With counselling help she’s found the confidence to speak out. “We are just people like everyone else” Sunita says. “We are unlucky to get HIV but there’s no risk to anyone else. I want people to know that I’m HIV positive. I have nothing to be ashamed of. I would like my sons to be able to play normally like other boys and for us to enjoy our lives. If more of us speak out then others will know and not be so frightened if this happens to them or if they meet people with HIV or AIDS.”

“We need understanding, not to be treated as criminals” Anita adds.

There’s progress from when HIV/AIDS first made news in India. Like many governments Maharashtra’s panicked in the face of the Pandemic. Colonial legislation was extended to require anyone who tested positive to register with local authorities. Today the government response has matured. World Aids Day is officially marked and basic information about routes of transmission is easier to find. Given the scale of the Pandemic however (India has over a tenth of the world’s HIV/AIDS population) more work is urgently needed.

Resources are over stretched and health services rarely available to poorer people. Responding to this, the Bahujan Hitay charity, staffed and targeted by people from the communities they serve have initiated their own response. Their counsellors combine individual therapy with an understanding of how to access medical services. As Sunita puts it “without counselling and support I may not be here to tell you about what happened to us”.

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