Rakesh*, aged 8, lives in a village outside New Delhi. Both his parents were HIV positive, diagnosed at the Delhi Commonwealth Women’s Association (DCWA), a social service organisation. His landlord, having been told that the father was HIV positive, threw the family out of their house. Rakesh had three sisters who lived in New Delhi with his parents. Their parents’ symptoms persisted and they died, leaving four orphaned children. The DCWA in partnership with SOS villages, who build families for children in need, took their daughters in, treating and caring for them. A spokesperson from the DCWA explained that the father’s family was so ashamed of his illness that they were unwilling to admit its existence, believing it came only from having “bad sex”. Rakesh is now alone in his village, uncared for, untreated, living with the cultural stigma of his father’s HIV.
The forgotten faces of AIDS orphans do not filter through to the streets ofNew Delhi, which are already peppered with poverty and development campaigns. The stigma that surrounds HIV/AIDS exists not only in the uneducated or rural population; it transfers across class and caste boundaries into the educated and wealthy minority, who refuse to employ those with HIV/AIDS for fear of their virus spreading. The ambiguity which surrounds the virus is a result of a lack of clear education, advice and information about the virus and the challenges its victims suffer. The Government of India has set up grassroots outreach programmes through the National AIDS Control Programme (NACP) in partnership with NGOs. Yet, there are no published statistics on AIDS orphans. The group as a whole is ignored.
In India, the disease is associated most strongly with injecting drug users, sex workers and homosexual sex; damning because of their place as cultural taboos. The term “AIDS orphans” encompasses vulnerable children both infected with and affected by AIDS, who have lost one or more parents to the virus. The focus of most studies is on sub-Saharan Africa, but very little data is available on AIDS-affected orphans inIndia. The United Nations General Assembly Special Session (UNGASS) 2010 report states: “India possibly has 150,000 vertically infected children; 1,500,000 children orphaned by AIDS; and 7,000,000 children with HIV-positive parents.” It continues: “[National AIDS Control Organisation]… estimates that 57,000 children are infected at birth inIndiaeach year, and is yet to finalise the estimates of Children infected with HIV. Out of over 70,000 children living with HIV registered in 2009, only approximately one third received ART [anti-retroviral treatment].” Although this is only a small percentage of the population, the proportion of AIDS orphans will continue to remain high for at least a decade.
The stigma that surrounds HIV/AIDS transfers to these so-called “AIDS orphans”, who remain on the fringes of society. The spiral which begins in childhood often continues to adulthood, disallowing these children from escaping the label of “AIDS orphan”, ensuring their inability to find work, earn money, and thus remain uneducated, malnourished and are denied property rights. The real trauma, however, remains in the mental stigma which prevents them from being a part of mainstream society. In a UNICEF press release, Deputy Executive Director Martin Mogwanja explains: “These children face stigma and dejection within their own community and even within their own families”.
Varun Sharma*, a young professional living inNew Delhi, was asked whether he would be willing to employ someone known to be infected with HIV/AIDS as a domestic. He replied: “No, because everyone with AIDS should be eradicated because then the disease wouldn’t exist anymore.” On asked to explain further, he said facetiously: “I’m not a fascist: it’s because of the threat it poses to my loved ones;because everyone with aids should be eradicated because then the disease wouldn’t exist anymore
AIDS is widespread amongst villagers, who have lower standards of hygiene so they might pass it on unintentionally.” Although he relented that proper education about hygiene would only be a positive, he stated he would never be willing to employ someone because “my family come first and I wouldn’t want to tempt fate just for the goodwill of others.” Anjali Kumar*, an educated middle-class businesswoman, commented: “I think in an office situation where they’re only handling paperwork, cleaning in a shop or that sort of thing is acceptable, but the minute you have someone in a kitchen who cuts themselves or isn’t properly hygienic, that’s when your comfort level disappears.”
This enduring mindset is crucial in understanding the continuing state of AIDS orphans. The lack of a family structure leaves them without proper grounding or roots, often leading to a hard life on the streets, no proper medical care, the lack of basic human rights, and the mental trauma of being rejected not only from strangers and general society, but from their own extended families. Children from both sexes are led, especially infected girls, into child prostitution and labour. The move into the migrant population of the sex industry only further exacerbates the problem.
The UNGASS report also states: “HIV infection often becomes a defining characteristic in the lives of those affected. It becomes a determinant for their access to services, livelihood options, medical attention, and simple social exchanges.” Orphans, without a familial support system, are more vulnerable to this kind of stigmatised discrimination, leading to their absence from Governmental reports.
The Fifth Global Partners Forum on Children affected by HIV and AIDS took place on June 3. Jimmy Kolker, chief of HIV/AIDS comments in a UN radio interview: “The goal of the meeting is to be sure that the issues that have been raised about care and support for AIDS-affected families, in particular those who were orphaned or made vulnerable because of AIDS are still on the global agenda. Some of those commitments are keeping parent and children living with HIV and AIDS alive and well, include strengthening families and communities for prevention, care and support…”
These statements from UNICEF are crucial to the ongoing plight of AIDS-affected orphans, not just in India but around the world, and need to be put into practice to ensure more children do not end up like Rakesh: uncared for, unloved, untreated, often uneducated, reliant on an extended family that may be unwilling to take care of him, and stigmatised especially within his own community, where his only anticipated comfort zone is denied.
* Names changed to protect identity.