Last week, a driver staying in Anna Nagar died of AIDS. Scared to touch the body, his wife called up social worker R.Sasi Kumar.
It was 9.30 p.m. and Sasi Kumar had just wrapped up his day’s duty as the counsellor posted at the Legal Aid Centre (LAC) of Tamil Nadu State AIDS Control Society (TANSACS) in the Government Rajaji Hospital.
Instead of going home, he reached the deceased person’s house and ‘packaged’ the body as family members looked on. Only after he had done his job did the family members pick up courage to transport the body to the crematorium.
Having worked with HIV positive patients and their families for more than a decade, Sasi Kumar, often wonders why the fear of contagion has not been conquered and how people should be helped to cope with it. “Awareness about the disease has increased,” he says, “but the stigma is still there.”
While working at the RUSS Foundation, Madurai, with children affected by the AIDS virus, he realised that in the absence of cure for the disease there had to be a paradigm shift towards caring.
“Those days with less awareness, more fear and low acceptance levels,” he says, “it was difficult to convince people about the importance of psychological welfare of the patients and their family members.” “Everybody wanted medicines that would cure the patient and would be devastated when told there was no cure.”
Sasi Kumar saw many families breaking down, facing discrimination and fighting over property or abandoning the diseased. That is when the Post-Graduate in Sociology from Madurai Kamaraj University decided to get into counselling. He joined the LAC six years ago.
Though his job entails receiving petitions from People Living with Human Immuno-Deficiency Virus and Acquired Immune Deficiency Syndrome (PLHA) on legal and non-legal matters, register and redress their grievances to provide relief, soft-spoken Sasi Kumar goes beyond. He hears out those who come to the LAC with difficulties in getting compensation for motor accidents, relief from dowry harassment, bail for inmates in prison or a legal share in land, alimony and assistance for deserted women and children, fills up their forms, submits them to the right authorities and also follows them up for timely action. But more importantly, he reaches out to those who don’t come to the LAC and helps them get their monthly pension or the education allowance sanctioned by the State or settling any other matter.
On his visits to suburban homes, he says, he came across several families refusing to sit together to discuss AIDS. “They gather for discussing cancer and money matters, but shun any talk on AIDS.”
It took repeated visits and gentle persuasion to turn around peoples’ thinking. Now, says Sasi Kumar, it takes him two sittings to usher in behavioural change. Recently when he was visiting Alanganallur, he found a 30-year-old HIV positive man confined to his home while his 27-year-old wife refused to take the test as she was scared of testing positive. After some explanation, she finally agreed and tested negative.
Says Sasi Kumar, the challenge now is to periodically review and maintain the protective behaviours that have helped the patient avoid HIV transmission. At the same time, he also realises the impact of his earlier interventions in the village. He sat with the panchayat people and took their help to spread the message of safe sex practice. “It appears to have helped somewhat,” he smiles.
There would be many more such homes where Sasi Kumar has gained the confidence of people. “I always tell them I have been working with HIV positive people without fear for over 10 years and that by following few simple preventive measures they too can live with them without putting their safety at risk.”
What he finds more difficult is counselling end stage AIDS patients, their families and other loved ones as death approaches. “There have been occasions when people have threatened to kill me when told they are HIV positive or may be nearing death due to AIDS.”
“I want to help, serve and save,” says the 36 years old youth who was a scribe for the visually challenged during his college days. When he took his grandfather to the Tuberculosis ward in 1996, he had his first encounter with a full blown AIDS patient. “He was a van driver whose family had abandoned him. Listening to his story, I realised how important it is to counsel those who are not suffering from the disease,” he says.
The Antiretroviral Therapy (ART) centre to which the LAC is attached records 300 children and 16,000 adults affected by HIV in the district. Sasi Kumar buys nutritional drink for these children and also supports many of them with stationery and study materials. In his earlier job he spent more than half of his salary on the welfare of HIV-positive children. Now he spends only one-tenth of his monthly pay packet.
“I am married now with a five-year-old daughter,” he says coyly, but adds that the number of PLHA visiting the ART centre in Madurai, has reduced from 200 per month to 100.
Ever willing to invest all his time and energy in the fight against poverty, denial, prejudice and risky behaviour in vulnerable groups, he says, “We have to find the patients, test them, get them into medical care, provide medicines lifelong, educate them and follow their progress.”
“Only then HIV care will be adequate and complete.”
(Making a difference is a fortnightly column about ordinary people and events that leave an extraordinary impact on us. E-mail soma.basu@thehindu.co.in to tell her about someone you know who is making a difference.)
