For the second time in a lifespan of 20 years, Akshara R, a college student in Kannur, Kerala has had to fight to remain in an educational institution, with the attendant media and public focus on her HIV-positive condition. She joins the long list of children and youth in India who have been socially ostracised and “thrown out” of educational institutions for no fault of theirs. On top of the trauma of having witnessed an AIDS-affected parent dying and a HIV-positive parent struggling to withstand all kinds of hardship or even both parents dying, these children and young adults are also forced to battle to study and live with dignity.
In all these decades since India’s first AIDS case was diagnosed in 1986, has nothing changed in terms of public perception of AIDS and of HIV? The moot point is, how much have the “knowledge” and “information” spread by the awareness campaigns by non-governmental organisations and the government dented prejudice and the stigma for people living with HIV (PLHIV)? There are around 2.1 million PLHIV in India.
Health and social activists have pointed out that the social ostracism and stigma is even more virulent than the virus. Worse, as experience over the decades has shown, not all medical, paramedical and community health workers are free of similar prejudices. Invariably—it happened in Akshara’s case too—the educational institution authorities point out that “other parents” are the ones who demand that the HIV-positive child be told to go as they do not want their children to play, eat and study with them. When this prejudice combines with existing ones against sections of society who already face discrimination—women, sex workers, sexual minorities, so-called lower castes, etc—it makes matters even worse.
Media reports quoting the National Family Health Survey 4 (NFHS-4) released in January by the union health ministry say that around 82% women and 70% men in the 13 states surveyed (including the high burden ones) do not have much knowledge of AIDS/HIV and safe sex practices. Health ministry officials quoted by the media agreed that there were hardly any advertisements or campaigns aimed at spreading such awareness in recent years.
Because AIDS and the HIV-positive condition are basically associated with sex—another of India’s taboo subject—regardless of how the person got infected, awareness campaigns have to specifically target prejudices built on traditional norms. This calls for awareness programmes and campaigns, which take sociocultural attitudes into account. Given the almost hysterical rejection of any attempt to introduce sex education in schools, this is not an easy issue to deal with. Even the mainstream media, which does report on cases of HIV-positive children being hounded and discriminated against, shies away from any sustained tackling of the deeper and subtler issues involved. In the past few years, the National AIDS Control Organisation (NACO) has faced cuts in funds and is no longer an autonomous body. While earlier it directed funds to the states’ AIDS control bodies, now the states have the discretion to prioritise and fund HIV related programmes. On 1 December 2015 (World AIDS Day), the Maharashtra State AIDS Control Society (MSACS) officials were quoted by the media as saying that lack of funds has prevented them from the usual rallies and awareness drives and even from conducting programmes to educate high-risk groups to come for tests.
Political and religious leaders refuse to accept the reality that prevails and lock in to individual morality when they talk of “abstinence” as the antidote and condemn the emphasis on advocating condom usage. Contracting AIDS or being HIV-positive gets linked to an individual’s “character” and morals. In fact, health activists have warned time and again that moralising creates barriers to reach out to the most vulnerable and affected sections like sex workers, men having sex with men, victims of sex trafficking, women with infected husbands who are powerless due to socio-economic conditions to walk away from the marriage, quite apart from those who are victims of infected blood transfusions and the most vulnerable—children.
The community, families, teachers, popular and mainstream media, cultural platforms, social media all need to be roped in to make HIV prevention measures a talking point and to help tackle prejudice and fear. Stigma reduction measures must be given prominence and there should be regular monitoring of feedback to ascertain what exactly the targeted audience has taken away from these campaigns. This is necessary because health activists say that some people speak of being frightened and confused by the awareness campaigns. A survey by Wake Up Pune showed that a higher educational background did not mean greater sympathy towards PLHIV.
The strategies and measures to chip away at the deeply entrenched prejudices must not only be well researched, they also need to be sustained over many years to bear fruit. Ground reality, not morality, must be the ultimate checkpoint.
- See more at: http://www.epw.in/journal/2016/13/editorials/targeting-taboos.html#sthash.j7cIjlGO.dpuf