Awareness “You can lead healthy and happy lives too” is the message Coimbatore District HIV Ullor Nala Sangam volunteers spread to those struggling with the infection.
It was T.Parameswari's first day at work. She had to meet her client Geetha in Ram Nagar. Try as she did, she couldn't locate her address. Parameswari approached a shopkeeper for directions. ‘Who? You mean ‘AIDS' Geetha?', he asked. Parameswari, HIV positive herself, was taken aback. “I can never forget that day,” she says. “Everything that happened from that moment on is vivid in my mind.”
Recalls Parameswari, “Geetha had a rash all over her skin. Her husband was dead and she had no relatives. She lived all alone in her house. But as we got talking, I came to know that everyone in her locality knew about her condition and were immensely supportive, including her employers where she worked as a cook.” For Parameswari, who was then a volunteer with Coimbatore District HIV Ullor Nala Sangam (CDHUNS), the meeting was life-changing. “I realised that HIV did not mean ‘the end'. I overcame the fear that had kept me locked up at home for a year.”
Showing the way
Parameswari then became a peer educator with CDHUNS, a community-based organisation that started a peer education system in 2007. CDHUNS is affiliated to Indian Network for Positive People (INP+). Parameswari explains, “A peer educator teaches HIV positive people about the disease, makes them aware of the treatment options, and most importantly, motivates them to lead normal, happy lives.” In 2008, Parameswari underwent a four-day training programme through CDHUNS. “I was taught how infected people should take care of themselves, what their diet should be and so on.” She began visiting those affected by HIV to spread some hope.
“It's not easy to win their confidence. We have to be extremely careful with what we say. I usually begin by telling my story and how life changed for the better after I came forward for treatment,” she says.
The system works both ways. Peer educators also gain confidence by the day. Parameswari says she once contemplated suicide. “I'm a completely different person now,” she smiles. She is now employed by CDHUNS as a field worker.
CDHUNS' secretary, S.Aruchamy, says INP+ conducted a ‘Master peer education programme' for two of its members who in turn train volunteers in the city. “Since 2007, about 25 volunteers are trained every year,” he says. “At present, there are 108 peer educators in Coimbatore, who are taught new courses every four months.”
The Antiretroviral Therapy (ART) centre at the Government Hospital refers newly infected people to CDHUNS, who are in turn assigned to volunteers . “Coimbatore is divided into 12 blocks with five to 10 peer educators for each block,” explains Aruchamy.
It has been 14 years since Aruchamy found out that he is HIV positive. “In 1998, I was sent out of a private hospital when I approached them for treatment. Though there are hospitals that take in HIV positive people at present, we have a long way to go to fight the stigma,” he says. “In rural areas, HIV positive people continue to be humiliated. Things haven't changed much.”
A peer educator enables an infected person to deal with stigma, says Aruchamy. “But every step of the process has to be planned and executed carefully. When a peer educator visits the household of an HIV positive person, she will not mention the term ‘HIV' unless she is alone with the person concerned. Sometimes even the family members may not be aware of their status, so one must be extremely cautious,” he says.
A peer educator's job doesn't stop with education and motivation. Says Parameswari, “We also provide nutritional support and educational support for their children if needed. I once met an HIV infected person who carried heavy loads from the daily market for just Rs.50 everyday. We arranged for an easier and better-paying job for her.”
Daily-wage labourers, drivers, housewives… they are all part of the peer education squad of CDHUNS. The lively Loganayaki, an anganwadi teacher is one of them.
“The first thing I tell an infected person is, ‘look at me',” she smiles. “‘See how happy and healthy I am. You can be too.”