A social revolution in the South?
While AIDS is spreading rapidly in the country, Tamil Nadu claims that the disease is "plateauing" in the State. A look at the issue.
AWARENESS CAMPAIGNS LIKE THIS ARE MANY: But social reactions remain shocking. PHOTO: PTI
IT is not easy to go public with your sorrow, particularly one that stems from social stigma and forces people to wait for slow and painful death.
For, combating a faceless epidemic like AIDS has not been easy despite pumping in enormous funds and efforts.
Social reactions to people with AIDS remain shocking. Despite intensive awareness programmes, AIDS is still perceived as a disease of "others", of people with sinful lifestyles. So an individual affected by cancer is a "patient" deserving sympathy while one afflicted with HIV is always a "victim".
It is feared that India will become the AIDS capital of Asia by 2010 with a whopping 25 million HIV positive people. But surprisingly there is only one State that claims that the AIDS problem is "plateauing here". Tamil Nadu where India's first HIV case surfaced in 1986 is claiming to be "reversing" the epidemic and being touted as "a success story in AIDS management".
Till two years ago, Tamil Nadu had the third highest incidence of HIV infection. In 2003, it reported 25,000 cases and slid down the list. Home to 60 million people, the prevalence rate of HIV in the State came down from 0.75 per cent in 2003 to 0.50 per cent on 2004. The awareness level jumped to 95 per cent from 64 per cent.
It became the "first State" for several things introduced AIDS education in High Schools, set up an information hotline, launched comprehensive AIDS education programme that specifically attacked ignorance and stigma associated with HIV and targeted entire population instead of just the high risk groups, paid 50 per cent of cinema halls in the State to compulsorily screen AIDS awareness spots before the commencement of the main film, introduced an innovative and cost-effective model programme with barbers enrolled as condom negotiators and information disseminators.
Women to the fore
It also put women in the forefront in the struggle to prevent HIV/AIDS. The public interaction in Madurai dubbed as Tamil Nadu's one of the seven "highly prevalent HIV districts" was organised by the Family Planning Association of India (FPAI) unit and multiple NGOs from various districts.
As the voices of these women resounded through the meeting hall, the promises and hope did not appear far-fetched but closer to ground reality. A young woman said her husband died "not because of HIV but due to lack of counselling". For the sake of her children, she decided to battle on against the virus instead of ending it all by killing herself. She was lucky, she said, because her parents and in-laws accepted her and kept her health status a secret. Today, she works as a community health worker in a social service society. A farm worker who contracted the disease from her husband and discovered it after his death is driven by the sheer desire to live to "tell the world a different tale". Turned away by her relatives, her chance encounter with the organisation, People Living With HIV and AIDS (PLWHAs), helped her divorce dejection and today she is enrolled as a counsellor at the Government Hospital.
Ranging from negotiating safe sex practices like use of condoms with partners to co-opting women's self-help groups and involving housewives in disseminating information about HIV, the so-called "weaker sex" has now brought itself into the forefront of the war against the virus. Women are no longer willing to waste away from HIV/AIDS.
Barriers are constantly being broken in this battle in which stigma and discrimination are the main enemies. The results are visible in the shape of fewer instances of families breaking up, parents accepting their HIV-positive children instead of dumping them at orphanages, getting them admitted into schools, uninfected people standing by their afflicted partners and HIV-positive people getting married.
In some cases, entire villages are standing by PLWHAs, determined that their communities and school-going children are not discriminated against. Families of PLWHAs are adopted by various associations and provided with medical, nutritional and economic support. Legal Forums in several places, including Madurai, are helping PLWHAs in getting a share of family property.
"The change is slow but visible," avers T. Raja of the Dindigul-based Mother Saradadevi Social Service Society. Strangely, he asserts, any resistance if at all is coming from the medical fraternity.
"We offer referral services and try to help doctors, nurses, paramedical staff cope with the treatment of HIV patients instead of being scared and remaining shrouded in ignorance," agrees Louis Paulraj of the FPAI. In Tirunelveli, PLWHAs, who are part of a women's self-help group, prepare special meals to be distributed throughout Tamil Nadu as part of an income-generating scheme. Several PLWHAs continue with whatever they did like selling fruits, vegetables and flowers instead of going for a new vocation.
"It is essential for care and support programmes to be need and area-specific," says Jaya Karupai of the Madurai-based Mercy trust. "We are helping women help themselves and trying to consolidate our efforts by improving the quality of counselling."
"From the beginning, there has been a readiness in terms of providing ART (anti-retroviral therapy) or PPTCT (prevention of parent-to-child transmission) in the State. The primary health care system of the State Government is comparatively good and the State machinery has proactively dealt with the issue," observes Pichai Mani, president of Tamil Nadu Positive People's Network. "The change in strategy of taking the message to the public through different sectors and stakeholders has marked a shift and enabled the State enter a `stabilisation phase', he says.
Louis endorses the view that this is an opportunity to install a series of paradigm shifts on diverse fronts rather than giving in to complacency and allowing the situation slip out of hands.
With an increasing number of positive people coming out together to improve their quality of life, the frightening rapidity of the disease can perhaps be checked. The challenge lies in taking sex beyond disease and death. "There are no comfort zones, especially for the youth to discuss these issues," feel the NGO representatives. AIDS is a "development challenge" which intermingles issues of poverty, inequality, culture and sexuality in several complex ways.
Since it strikes relentlessly at people in the prime of their life, it can be overcome and defeated only if we work together at the local, regional, national and global levels without fear.
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