Obstacles to prevention

In India, the fight against AIDS is mired by a lack of information about the extent of the epidemic, a lack of consensus with respect to the strategy needed to stop the epidemic, and the cultural difficulty of openly addressing the issue of sexuality. Furthermore, prevention is complicated by the numerous languages and dialects spoken in India. A certain amount of education can be provided at a national level, yet efforts are often better implemented at the local or state level, through NGOs rather than government agencies.

In 2013, the Bill and Melinda Gates Foundation (a humanist organization) ended ten years of collaboration with the Indian authorities, and ever since their departure government policies to help fight the illness have become increasingly more uncertain.

culture indienne et déni du sida

Ignorance, denial and superstitions

The denial of the phenomenon of AIDS in India has led to a delayed diagnosis of the epidemic. Even today, ignorance about AIDS is staggering: some health professionals, for example, are unaware of how the disease is transmitted. In some cases doctors have been reluctant or even refused to examine a child who has been pronounced HIV-positive, when in fact they were only informed of their condition so that the appropriate precautions could be taken.

A lack of awareness about AIDS has led people to think they are at risk of contracting the disease through contact with saliva or mosquito bites. As the Indian population does not receive any formation on the subject, superstitions have taken hold and popular opinion assigns a divine origin to the disease, implying that the person who is ill must have merited their illness in some way or another.

One study has revealed that in India, 36% of people feel it would be preferable if those infected died, and the same percentage believes those infected have merited their lot. Of those questioned, 34% said they would not want to have a relationship with someone who has AIDS, and one fifth claimed AIDS was a divine punishment. Ignorance breeds fear and fear is a source of further discrimination.

Discrimination and social exclusion

AIDS is not only destructive to health, but also causes major prejudice against people who are contaminated. Even though untouchability was abolished when India gained independence (see Article 17 of the Constitution: “Abolition of Untouchability”), the caste system plays a significant role in society, which creates a breeding ground for discrimination.

Within this context, AIDS is the cause of particularly severe discrimination and stigma, which contaminates the lives of families and communities. Such discrimination is rampant at many levels: within villages, at work, and even in hospitals. As a result of their HIV status, people continue to suffer ill-treatment or inadequate health care.

Indeed, the health care sector has been the environment in which most discrimination, stigma and denial with respect to HIV or AIDS has taken place. The negative attitude displayed by health care teams has generated anxiety and fear among people living with HIV and AIDS. Many people have therefore kept their status secret out of fear they will be considered of a lesser state than others. For the majority of people who are HIV-positive, fear and anxiety associated with AIDS, as well as the denial on occasion of their status as someone with the illness, can be attributed to a traumatic experience they have undergone at a health institution.

The children at Shanti Bhavan Children’s Home are victims of such discrimination. Many have come here after the death of their parents, because they were rejected by those around them. One, for example, was not allowed to enter their house and had to sleep outside. Another had boiling oil thrown in their face when their grandmother learnt of their illness. Recently, three of our children who were suffering from minor dermatological problems were suspended from school for three weeks, even though there was no real risk of contamination.

For children with AIDS, schools are a place where discrimination is rife: during the creation of the orphanage, none of the children we welcomed had been properly educated. It was an enormous struggle to explain to school principals that our children were not a danger to their peers and had just as much a right to an education as any other child.

In extreme cases, HIV infection can be the cause of a sufferer being rejected from their caste, ostracized from their family, or, when there is an absence of safeguards, something even worse, such as being the victim of a lynching or murder. Nevertheless, people’s way of thinking is gradually evolving. We witness this in our own humble way through the manner in which relatives are receptive to the children when invited to visit, as if they have come to realize that the children are normal, full of life and promise.

Absence de famille et déstructuration

Family absence and breakdown

Another consequence of AIDS is that it produces orphans. 85% of children at Shanthi Bhavan Children’s Home have lost their parents to AIDS. Some have no family ties, and while others have an uncle, aunt or grandmother still living in their village, they do not maintain much contact with them, for the reasons already mentioned above.

The social fabric of India is extremely dense, which means social recognition is necessary for someone to build a life for themselves. An example of this can be seen in the fact that most marriages are arranged by the families of the young people when they reach marrying age. The family is also what motivates young Indians to enter a profession. Indeed, the primary motivations of Indian students seem mainly to center around repaying the debts of their parents, honoring the sacrifices their parents made for their education, or simply giving their parents the pride of having their child climb the social ladder.

The place the family holds in the life of Indian society is so structural that it is difficult for a young orphan to progress, nurture their ambitions and integrate into society.