Children orphaned by the death of their HIV positive parents are being cared for by their grandmothers who have found empowerment in their unusual situation, writes Esther Elias

In the early 90s, South Africa recognised that it hosted the world’s severest HIV/AIDS epidemic. Two decades later, it produced 1.9 million AIDS orphans, for the disease had wiped out an entire generation of HIV-positive parents. It left the older rung of grandparents (often widowed grandmothers) with vulnerable children on their hands. Some returned to till the soil and others lent themselves to housework and small industry, but soon enough, most joined together to pool material resources and emotional support towards empowerment. These collectives of grandmothers are today credited for the upliftment of an otherwise castaway generation.

Hard lives, yet hopeful

Meanwhile, in Coimbatore, 46-year-old Selvi lost her daughter and her son-in-law in quick succession to HIV/AIDS. With no one to look after their two daughters, Selvi took them in and admitted them at the local government school. For 10 years since, she has worked all day as house help. It brings in Rs. 2,000 a month — just enough to get by for food and clothing, besides supporting the medical needs of Kannagi, the older, HIV-positive granddaughter. Selvi’s story is like her South African counterparts’, and she is joined by a similar handful of Coimbatore’s grandmothers.

‘We began seeing this trend in the mid 2000s, when the disease had been around long enough to take lives. Through fieldwork for HIV-positive children we discovered some of them were looked after single-handedly by their grandmothers,” says Kezevino Aram, paediatrician and director of Shanti Ashram. From their early 50s to their late 80s, these grandmothers were scattered across Perur, Sundakkamuthur, Karunya, Tirupur and Mettupalayam. Their stories are mostly of hardship, laced however with hope.

S. Ponnammal, 58, works 20 days a month at a plastic carry-bag factory which gives her Rs. 100 each day. The remaining days she cleans homes for an extra Rs. 50 with which she looks after her 10-year-old, HIV-positive grandson Tamizhselvan.

When Tamizhselvan’s parents passed away, his father’s sister undertook the care of his older HIV-negative brother, but left him to Ponnammal.

Besides being alone in the struggle, age and illness often ail most grandmothers. Sixty-nine-year-old Janaki looks after two grandsons, Saravanan and Selvendhran, but is unable to work for a living after a knee-replacement surgery and cataract operation. “We receive rations for food and the government hospital gives Saravanan the medicines he needs for his HIV, but managing the Rs. 700 house rent each month is tough,” she says.

These grandparent-grandchild relationships are rarely one sided though; in fact, it’s raised a group of young children who look after their grandparents in turn. “Selvendhran knows I’m there for him always, so during my eye operation, he accompanied me and looked after me all through,” says Janaki .

Their situations have also made these grandmothers more aware and demanding of their rights says V. Thangakili, Community Development Organiser at Shanti Ashram. “They make sure they have their election card and widow pension for this gives them extra ration. They also take care of themselves better because they know they are the only breadwinners for their children,” she says. Ponnammal agrees saying, “I fought for my house when relatives tried taking it from me, because it’s all I’ve got. I also take better care of my diabetes now.”

Being sole, responsible decision-makers has not just empowered, but emboldened many of these grandmothers. “They see HIV/AIDS awareness from two sides — first from the community’s perspective because they were once outsiders to their children’s HIV and second, as caretakers because they’re now responsible for their grandchildren,” says Dr. Kezevino. Thus while immediate neighbours are unaware of many of their grandchildren’s disease , these grandmothers speak about HIV/AIDS awareness before others.

Ponnammal for instance, has addressed nursing students on being non-discriminatory towards HIV patients, telling them of how when her daughter-in-law was seriously ill, the nurses looking after her refused to change her bed pan for she was HIV-positive. Selvi has also shared her story with others.

Right across however, there is the underlying worry of what happens to their grandchildren after the grandmothers’ time. “We hope to provide some form of ‘death counselling’ to such children because not only must they be prepared to handle their grandmother’s death but also be independent themselves,” says Dr. Kezevino. Fear of the future, however is not priority for 60-year-old M. Kannamal. She says, “What’s the point in fear? I can’t do anything with it. If I think about it always, it’ll take me down. So I forget and keep moving forward.”