Peter Borges
A lot of learning needs to be seen from the current issues at Rivona. This is just an isolated incident that has come to the fore. There is more to this whole issue of stigma and discrimination of HIV positive children in the State, rather than just denial of school admission. I would say, without achieving zero discrimination it will be impossible to realize zero new HIV infections or zero AIDS-related deaths.
My close association with such children over a decade now, shows how neighbours and relatives treat these children differently to other children. They are teased, shunned, shouted at or ignored in their homes and neighbourhoods. Exclusion from family events, ceremonies, festivals, birthdays, puja and marriage are common. Children have also con?rmed they are made to sit separately, get less attention than their classmates, and said their parents’ illness is used to humiliate them. More surprising is discrimination in medical settings where they are made to sit separately, wait until last, have nurses refuse to dress wounds or give injections, be placed in a corridor rather than a ward, referred to another centre, or simply turned away.
The most popular recommendation in everybody’s mind will be “awareness raising” – usually in relation to the modes of transmission of HIV. However, research and experience around the world suggests that knowing how you can be infected does not necessarily reduce stigma – in fact some messages may actually promote exclusion, particularly if campaigns use messages of fear or if they provide incomplete information on treatment, life-expectancy, human rights and social entitlements. I have been coming across people who are calling for separate education facilities for these children – a step which is, in itself, clearly discriminatory. Much is made of “living positively” but this is nearly impossible when disclosure instantly exposes HIV-positive people and those they love to social judgement, ridicule and exclusion.
The solution to stigma and discrimination clearly lies with those who practice it, not the victims of it. So, while it may be necessary to counsel people affected by HIV/AIDS to help them cope with the abuse meted out by a fearful and misinformed society, emotional support does little or nothing to overcome the cause of their anguish. On the other hand, if we could overcome stigma and discrimination (a systemic intervention) the need for counselling (a targeted intervention) would be dramatically reduced. Interventions must start with, and be sustained among, people who are elected or paid to serve the public.
While “awareness raising” may not be the whole answer, it is certainly a vital component. Not, in this case, awareness of how to avoid infection, but rather awareness that there is practically no chance that anyone will be infected by a child with an HIV-positive parent – even in the unlikely event that the child is HIV-positive themselves. There needs to be greater awareness, too, that neither infected children nor their HIV-positive parents are at immediate risk of dying, thanks to antiretroviral drugs which are now widely available in India. And these messages need to reach the doctors and teachers ?rst!
The HIV/AIDS Bill has been pending with the government for the past seven years. The passing of the long pending HIV and AIDS Bill in its original form will contribute to reducing the epidemic and will also protect the rights of people living with HIV, including children affected and infected. The bill aims to provide legal redressal against discrimination in both public and private sectors.
To the particular people of Rivona and PTA members who have been opposing these children’s rights, I say these children and other HIV positive children located in their families are deeply pained at your opposition. By your actions, you have treated them like untouchables. This will make it very difficult for them to establish contact with potential mentors. This will also make them afraid to con?de in others, unable to share their feelings and reluctant to approach friends and relatives for fear of rejection or public exposure.
It’s time to join hearts and voices and set an example for the rest of the country.
(The writer is Founder of Human Touch and also the Secretary of Positive People)
