More than 40 lakh people are dependent directly or indirectly on the powerloom industry in the city of Bhiwandi. Yet literacy levels and healthcare are of the poorest quality. Pankajkumar Bedi tells the story of one NGO that battled ignorance and religious taboos to raise AIDS awareness levels and provide a much-needed service
The city of Bhiwandi in the Thane district of Maharashtra is located 60 km to the north-east of Mumbai and 15 km to the north-east of Thane city. The economy of Bhiwandi is heavily dependent on the powerloom industry. The decline of Mumbai's textile mills spurred the growth of the powerloom sector. In order to meet the demand for grey fabric, powerloom centres sprang up in various parts of Maharashtra. Textile and migrant workers came in droves to find work at these centres. Bhiwandi became the largest powerloom centre in the country. The state government estimates that over 40 lakh people are dependent directly or indirectly on the looms of Bhiwandi.
Almost 80% of the population of Bhiwandi is Muslim, most of them illiterate. Ishtiyaque Ahmed, editor of a local newspaper, says the area is plagued by extreme poverty, illiteracy, poor sanitation and water and power shortages. The condition of government schools is pathetic - 300 students in a class that is monitored by a single teacher. Private schools are expensive and a loom worker can only dream of sending his children there.
Public healthcare facilities are no better. So the work of the NGO Rashtra Swasthya Prabodhini (RSP) is critical. It works in Thane district to raise the awareness levels on health, provides healthcare services by way of a clinic and referrals, and promotes condom use as a means of safe sex and to prevent STD/HIV/AIDS.
The work started in 2001 and it wasn’t easy. Says Ajeem Ansari, a peer educator and one of the senior staff: “It has been difficult. The community that we wanted to reach out to had religious beliefs and taboos surrounding condoms, STD and HIV/AIDS. They refused to listen to us. We were shunted out many times, abused, and even beaten up. But we knew that it was necessary to talk to them and make them aware of the risks that the community was exposed to.”
Labour in Bhiwandi is cheap and loom shed owners have exploited the situation. They pay well below the minimum wage and provide inhuman working conditions. “Hundreds die of tuberculosis because they inhale cotton lint and many are handicapped by physical disabilities every year," says Abdul Hakim who runs a tailoring business. "There is absolutely no protection for the workers. If you protest, you can be sacked. In Bhiwandi, it is possible to pick anyone off the road and they are prepared to work for any amount."
The daily wage of a powerloom worker is between Rs 60 and Rs 100; frequent power cuts bring down the number of working hours and this reduces the salary further. Long days of hard labour and lack of family comforts encourages the men to seek the services of sex workers.
“Before our project started, their knowledge about HIV/AIDS was based on religious interpretation. Sab Allah ki den hai (All that comes, comes from Allah), many would say,” recalls Aslam who owns the Jhankaar cinema hall. The team from RSP persuaded Aslam to show films on HIV/AIDS during breaks in his video shows. “Men did resent it, but the medium was effective in shattering many misconceptions about HIV/AIDS,” says Ajeem.
Ajeem was the first peer educator and helped establish the much-needed confidence in the community about the project. “They knew only how to run the power loom machines and paid little attention to any talk about health, HIV and condoms. Talking about sexually transmitted diseases (STD) was a big taboo!” he admits, adding that what helped break the ice was that he himself belonged to the community. “But I cut across both communities – to Muslims I would say, Salaam and to Hindus Namaste - and only after befriending them would I start talking about the issue,” he says. Somewhere, the community knew it needed this information. Since what the RSP provided as part of the health service package met the needs of the community, the latter opened up and became more receptive.
Kamlesh, an old hand at RSP, recalls the first concrete steps in winning community confidence. “All loom workers ate in a mess or canteen known as the bhisi. Once I was talking to a small group in front of a mess in Gulzarnagar when the owner of the mess called me in and told me to talk to the men who were eating in the canteen. That was the first support we got from the community.”
RSP’s AIDS awareness project funded by the Maharashtra State AIDS Control Society (MSACS) gradually succeeded in raising the level of awareness in the community and in giving those who needed it confidence to access services like the clinic, regular health check-ups and condoms.
Sudhakar Marathe, who is in charge of the project, points out that Bhiwandi has no all-encompassing healthcare service. The combination of information, testing, treatment and counselling that the project provided helped the community to recognise the risks they were exposed to (long hours of work, unprotected sex, STD) and take precautions.
A clinic started in 2002 provided facilities like STD diagnosis and treatment, voluntary testing and counselling. The team at the clinic established linkages with government hospitals in Bhiwandi, Thane and Mumbai and arranged for referrals. Awareness creating IEC materials, behaviour change communication (BCC) and events like World AIDS Day and festive occasions went hand in hand with setting up condom vending machines in the locality. Now there are 12 condom outlets accessed by the community.
“A small measure of success is the fact that earlier the condom was haraam (forbidden); some would call it a do paise ki cheej. But now even the women ask for it,” says Marathe.
Sameer, a young outreach worker, says that all the components - counselling, referrals to quality healthcare centres and even condoms - brought about a major shift in the beliefs and perceptions of the people. “People got over their religious taboos and differentiated religion from health. Even women started listening to us.”
Another major indication of change is the fact that requests come in from mohalla peace committees, madat committees, youth committees and even individuals for a discussion on HIV/AIDS and STDs. On Fridays, the weekly off for the loom workers, the team has to attend many such requests, some coming from women’s groups.
“Our counselling was put to the test when one couple, the first HIV case in the community (in 2002), came to us,” says Kamlesh. “They would often quarrel and blame each other for their situation. At the counselling centre, we first held individual counselling sessions and then counselled the couple together. We told them that instead of blaming each other, supporting each other would help them fight the virus. They became regulars at the clinic and have not faced any critical health complications so far.”
Ragini (not her real name) is the quintessential success story. Married at 16, she was expecting her first child at 17, when the family doctor confirmed that she was HIV-positive. Her husband Kishore was jobless and often resorted to petty crimes to earn money, a practice she despised and wanted to correct. She herself is a powerloom worker. She remembers vividly the moment when her mother informed her about her status. “All of them (relatives) were in profound grief. I felt as if somebody had died. When my mother told me that I had HIV, I was shocked. But I did not break down. Somewhere deep in my heart, I decided to face it bravely and the fight began the moment I heard the news. Had I broken down, I would not have been here.”
Ragini came into contact with RSP through her mother. Manoj Singh, a counsellor at the RSP clinic located in the Indira Gandhi Memorial Hospital says the mother worked at the hospital and “she knew that we work on HIV/AIDS. She would often come and ask me if there is any remedy for AIDS. One day I convinced her to share the reason for her curiosity and she informed me that her daughter had tested positive.”
Ragini was counselled at RSP and was told about the Network for Positive People formed by HIV-positive people to provide care and support to each other. She attended a one-day support group meeting at the network’s office in Kalyan. “That one day changed the way I thought to take forward my life,” Ragini says. At the meeting she learnt how to manage the situation and deal with HIV. “I learnt that I can control my life and live as healthy as anybody else. Why should one feel let down by a health condition which will only go haywire if you yourself don't attend to it with care?”
Becoming a part of the network was not easy for Ragini. Her in-laws were not aware of her status, but her husband had let her down by blaming her for the condition. “My in-laws did not approve of me stepping out of the house. I knew that my husband was positive and informed him about the network. But he refused to either come with me or allow me to go and visit the network.”
Ragini had to fight it out and she fought with grit and determination. “I remember her coming to RSP and telling me – if someone meets with an accident, he dies immediately. But I am alive and have many more years to live. She was highly optimistic and her confidence even shook us,” Manoj Singh recalls.
This confidence helped her to leave home with her daughter and come to the network. “I told Shabana (president of the Thane Network of Positive People [NTP+]) ‘give me just eight days to stand on my feet and I will take care of myself’. And I am happy that I did so.”
She was trained to become a field officer and a positive speaker. Today she is a field officer at NTP+ and looks after her daughter Shyamali, now five years old. “I do follow-up with the network members and share my experience in the positive group meetings even at MSACS.”
Away from her husband and in a home of her own now, Ragini dreams of educating her daughter. She calls the virus a naughty child with whom she has to live. “I know just how naughty it can get, but I can control it.”
(Pankaj Bedi is an HIV/AIDS worker and works with the Centre for Advocacy and Research, Pune)
InfoChange News & Features, May 2009