Children of misfortune

Abung and Nanao's double-storey house was once a happy home — complete with parents, grandfather and two sisters. Today the brothers are among scores of orphans of HIV+ parents in Manipur. The total number of people living with the virus in this state is 27,961, writes Thingnam Anjulika Samom

Abung and Nanao stay alone in their double-storey mud-and-wood house. Photos: WFS

Piping hot meals, a roaring fire in the hearth and family and friends sitting together, sharing tales of joy and sorrow—the kitchen is often the most bustling part of a Manipuri house.

However, all one can find in Abung's kitchen are cobwebs, dirty dishes and a fireplace that hasn't been used in ages. "We use an iron stove, instead. I cooked last night. Today it is his turn," says Abung's brother, Nanao (16). Undaunted by his task, Abung (13), says: "It's easy. All you have to do is boil some water in the pot and put in the rice."

Abung and Nanao's double-storey mud-and-wood house was once a happy home—complete with their parents, grandfather and two sisters. Today, Nanao stays on the first floor, while Abung sleeps in a room below. "It's the only way to ensure that rats and stray cats do not litter the rooms," says Nanao. The many Hindu gods their parents worshipped now look down solemnly from fading posters pasted on the outer walls.

Abung has to take turns with his elder brother to cook in their bare kitchen

The brothers are among the scores of orphans of HIV+ parents in Manipur. Their father, an ironsmith, was an intravenous drug user. He passed on the virus to his wife and children. "Father died in 1999. I was in nursery then. Mother died in 2001," says Abung, adding: "I don't know what their illness was. I can hardly recall their faces and rarely see them in my dreams."

While Nanao, a class VIII student and a promising taekwondo player, tested negative, Abung lives with HIV/AIDS. Their two sisters also tested negative and are now married and settled in their own homes. Abung is in the care of his elder brother. Bound by tradition, their sisters cannot stay with them. "My eldest sister stayed here with her husband for a few months last year. But she had to leave as she is the only daughter-in-law of her house," says Nanao.

The two brothers survive on rations and money given by their aunt, who lives in Moirangkhom. "Whenever we need something we go to her. She gives us rice—about 3 or 4 kg at a time, as we cannot carry too much on the cycle. She also gives us money—sometimes even Rs 50," reveals Nanao.

Pushed into adulthood before time by their circumstances, the boys have had to take on economic, household and healthcare responsibilities at an early age. They work as apprentices at a nearby factory, making knives and other kitchen items, and earn anything from Rs 20 to Rs 200. "I work on smaller items like yongkhot (a small, curved iron tool). I can't do cumbersome tasks because that will make my illness worse," says Abung.

Though many of these children know of HIV/AIDS through awareness programmes and counselling by NGOs, they are yet to comprehend the whole gamut of the disease, how they are affected or infected by it, and their own vulnerabilities.

"I have to take my medicines at the same time everyday. If I forget, my brother reminds me," says Abung, who tested positive and has been on antiretroviral therapy (ART) ever since. "I take all these medicine because I am HIV+."I don't know how I became HIV+," he says.

While Abung is empowered by his own acceptance and knowledge of HIV/AIDS, there are many who are still in the dark about their status. Jasmine (8) is at a loss as to why she was hospitalised for a fortnight recently. "I had a cold," she says, shyly. She is the youngest of five siblings orphaned by HIV/AIDS. Two of Jasmine's brothers live in an orphanage in Kerala. Her half-sister, Rashmi (17), who is a BA second-year student, works long hours at a tailoring house to provide food and other basic amenities for the family.

In both Abung's and Jasmine's cases their relatives are not on cordial terms with them — partly due to their own immediate struggle for survival and also as they don't want additional responsibilities. Property and inheritance factors are also important contributors to unravelling family ties. While neighbours often come to their rescue, by and large the children are left to their own devices. Meanwhile, NGOs working in the area are doing what they can to help them.

The important question is when and how to tell HIV+ children about their status and to make them involved in the decisions and practicalities of treatment. "Though we are given basic training about counselling people living with HIV/AIDS (PLWHA), we are at a loss when it comes to dealing with children. Many questions perturb us, such as whether to and how and when to tell the children about their status and how to make them understand the necessity of taking their medicines on time. For the adolescents, it is how to make them understand why abstinence, fidelity or safe sex is more crucial for them than their friends," says Yumnam Sadhana, a counsellor at the Imphal east office of the Manipur Network of Positive People (MNP+).

Established as a self-help group by five injecting drug users, MNP+ today has over 1,600 members. Of the 295 children enrolled for ART under MNP+, 98 have a single parent, while 47 are orphans. "The absence of children-specific programmes is an issue. We work with children—both affected and infected — but the programmes are basically targeted at all PLWHA," says Kh Purnima, programme coordinator, Social Awareness Service Organisation, a body formed by former drug users and working with injecting drug users (IDU) and PLWHA. In most cases, NGOs tie up with bilateral donors to address the needs of the children.

"If there is only one infected person — adult or child — in the family, it is better. But mostly there are multiple cases within a family. So their access to education, nutrition and care is affected," says Purnima. "The absence of orphanages for HIV/AIDS children is also a problem. The existing homes are
reluctant to take on the responsibility of an HIV/AIDS infected child," she adds.

However, the number of HIV/AIDS orphans could be much higher as such an estimate would take into account not only the infected but affected children. The total number of people living with HIV/AIDS across age groups in Manipur as per the reports stands at 27,961. (The names of the children have been changed to protect their identity.) — WFS

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