Tackling stigma: In Indore colony, HIV-positive patients live to the fullest
The spirit and zest for life is infectious in a settlement near the Ring Road on the outskirts of Indore city, where 106 families of HIV-positive patients live in remarkable harmony.india Updated: Sep 27, 2016 08:42 IST
The spirit and zest for life is infectious in a settlement near the Ring Road on the outskirts of Indore city, where 106 families of HIV-positive patients live in remarkable harmony.
The happy faces belie what such patients go through elsewhere — their spirit dies before death comes.
They are part of a resettlement programme that the Madhya Pradesh Voluntary Health Association (MPVHA), an NGO, initiated in 2003. But more than a decade ago, when the first family with HIV-positive patients was brought to settle on that stretch of land, they faced a hostile environment — much like everywhere.
“There was fear of being ostracised, even outright hostility from people living nearby,” said an HIV-positive woman and a counsellor with the MPVHA.
Her neighbours are HIV-free families and it took time for them to be aware of the disease and behave normally. “Sometimes they hurl abuses and tell me to go away. They would say that my presence would infect the entire colony.”
She recently lost her husband to AIDS, yet remains positive and helps fellow sufferers maintain their sanity and fighting spirit.
Cloistered in groups of 20 to 30 households, the colony of HIV-positive patients has expanded over the years and they now live within a radius of 2km along the busy road.
“The job is to give these patients what was snatched away from them — the right to live happily and with respect. Most of the family members or patients who came to us had lost hope. More than the disease, the fact that they had HIV-AIDS had shackled them emotionally,” said Mukesh Sinha, executive director of MPVHA.
“It is here that we built an ecosystem around them, giving them an opportunity to share their problems and concerns with people who are on the same journey as them,” he said.
The NGO realised seven years after working with HIV-AIDS patients how stigma pushes these infected people to the brink, turning them into social pariahs. Hence, it decided to help these people regain their lost confidence, find a livelihood and, most of all, salvage their battered life.
The self-belief of a 40-year-old woman speaks of the project’s success.
“I got infected by my husband, who contracted it from a sex worker. For two years, he hid it from me. When I got pregnant with my second child, the doctor told me I am HIV-positive,” she said. She was then at her husband’s village in Barwani district, where the family grew crops.
“After knowing this truth, I could not live with him anymore. Also, my in-laws started misbehaving with me. It is then that I decided to move out,” she said.
She now lives in a cluster along the Ring Road with her “adopted extended family”, which helped her confide about her condition to her daughter.
“I could not tell her. How could I? She was so young when I was diagnosed with this disease and there is a painful history behind it. But then the group here counselled me, told me how to explain this to my daughter,” she said.
Now, not only her daughter, but the entire neighbourhood knows she is HIV-positive. Nobody abuses her, everybody tries to help.
Another HIV-positive woman narrates a similar story. She is 80 and lives with her grandchildren aged 19, 16 and 15 after her daughter died of full-blown AIDS eight years ago. Her granddaughter, the eldest of the siblings, recently married a man from the colony.
“My daughter never told anybody about her condition. The stigma was so huge that she could not reveal the truth. After her death, the responsibility of the grandchildren fell on me. It wouldn’t have been possible had I not received the guidance and help of people living around me,” she said.
Her two grandsons are HIV-free, attend school, and participate in street plays that try to demolish deep-seated misconceptions about the infection.
“When Nani (grandma) told us about the disease, we were scared. We thought after mummy she is going to die as well. To make it worse, people would break off marriage proposals for our sister,” said the older of the two brothers, who wants to be a doctor.
The settlement also houses a group of widows and women whose husbands abandoned them.
This group holds monthly meets and shares livelihood options, such as stitching and embroidery.
The support system is so effective that it takes care of even the most mundane things — having medicines on time and getting regular health check-ups.
“An HIV patient often fights loneliness a lot. They lose interest in their life as they hardly get people who can take care of them without judging them. Here, everyone is equal,” said another HIV-positive woman.
Her neighbour, a young mother of three whose husband lost his job after he was diagnosed with HIV, is a bubbling example of the all-pervasive fighting spirit in the colony. She started working as a domestic help and is soon going to be a cab driver.
“I used to be scared even to get medicines from the shop. People, even doctors, looked at me suspiciously. This ruined my self-confidence. But thanks to this small family and neighbours here, I am able to move ahead,” she said.
(Names of patients have been withheld to hide their identity)