When will the finger pointing stop?

Patricia (name changed) is barely 40, but the lines on her face and frail frame make her look older. Bouts of illness and worry have taken a toll of her appearance. Diagnosed with HIV almost seven years ago, Patricia’s life has been dotted with miseries, but she has bounced back with a strong will to live.

She found out she was HIV+ when she was expecting her first child. “I had gone in for my routine check-up and was told I was HIV+. My husband refused to acknowledge the fact that he had transmitted the disease to me. He beat me every time I raised the topic. Neither would he undergo treatment nor would he allow me to. After months of struggle, I decided to go to my maternal home, but there too, my mother turned me away. I had been afflicted with polio as a child and use calipers to walk. Despite that, I worked hard for my family. I didn’t marry before making sure my younger sisters were settled. But now, they didn’t want me,” she recalls.

Patricia now decided she would single parent her daughter, Christina (name changed). Her husband had committed suicide soon after their daughter’s birth.

“My husband’s sister took care of me till my daughter was born. After that I had to find ways to earn a living. My daughter was too malnourished and later, when she was almost nine months old, doctors told me that she too was HIV +. I was shattered, but I knew I had to give her a better life,” she says.

Patricia went to a home meant for children with HIV in Gummidipoondi, where she worked as a caretaker and member of the housekeeping staff. “I couldn’t stay there for long because it was a home meant for children, not parents. My daughter had lost her sight after she was put on medication. I couldn’t leave her alone there,” she says.

She went to another home for HIV+ patients where she stayed for a few more months before deciding to start working again. An institution she approached in Chennai told her that they would be able to help her better if she could show some proof of residence. “I decided to ask my mother and siblings to help me find a house. At first, they turned me away, then agreed to find a house. In a day, they found a house for me in Manali, paid the deposit and helped me shift there,” she says.

Finding her feet

Patricia began working at a garment factory. Soon it was time for her to look for a school for Christina. “I didn’t study beyond standard 7, but I didn’t want my daughter to follow in my footsteps. I enrolled her in a school meant for differently abled children. I told the top authorities about the disease and they agreed to keep it confidential,” she says.

Today, Patricia works in Chetpet at a place meant for the HIV patients. “It is easier for me here, there are others like me. But I always fear for my daughter. What if someone gets to know and raises the matter with the school? What about her future then,” she wonders.

Patricia has been undergoing Antiretroviral therapy (ART) every month along with her daughter. “If we miss one session doctors from the centre get in touch with us. I have told them to call and not come home as no one in the locality knows about our condition,” she says.

Every morning Christina’s mother gives her a tablet along with her breakfast. She mixes it secretively when they are going to school by bus. She asks her mother about it and she is told that the tablet is good for her. Every month, she goes to the Government Hospital for Children in Egmore, but she doesn’t know why. She doesn’t understand why her grandmother doesn’t talk to her when she visits her.

Christina, who is now seven, is a bright child who talks a great deal and likes her studies. She already has a dream: she wants to become an IAS officer. “I want to help poor people when I become a Collector,” she says with a shy smile Patricia wants her daughter to follow her dreams and make her independent. “Whenever she learns about the disease, I only wish that she accepts it without bitterness. I want her to become a Collector like she desires. That’s the only dream I am living for,” she says, holding back her tears.

Sathish Kumar, training manager, Y.R. Gaitonde Foundation, who has been following Patricia’s case for the last seven years, says that ending stigma and discrimination has been the theme for World AIDS Day for a few years now. “Stigma is the biggest challenge for those with HIV/AIDS,” he says, even though the government and NGOs have, for the last 25 years, been trying to correct the way people view the disease. “Where a child is concerned, a senior person in the institution is aware of the case. If they need to avail of leave, they must know that this is not simply a case of common cold or cough. Then there is the burden of medication: skipping a dose or two is detrimental to the person’s health,” he adds. Sathish Kumar, points out that the burden can be reduced only collectively. “If people like Patricia and Christina need to lead a life free of stress, each individual has a major part to play in this endeavour,” he says.