Celina is petite, middle aged and has amazing confidence for someone who is HIV positive. She has been living with HIV for the last 12 years and is now one of the articulate public faces of people living with HIV/AIDS. Only 10 per cent of those who are HIV positive even know they are infected. The knowledge that they are infected affects them deeply. “Many of us are shattered when the doctor reveals our status,” says Celina. “So an insensitive media carrying our photographs as though it is a great scoop can ruin our lives. In fact the impression I got from the media reports was that I was dying because I was HIV positive.”
Celina was still coping with the death of her husband in Goa when the media carried her picture and story. Her in-laws immediately threw her out. The excuses given ranged from “your brother-in-law will not be able to get married if you are in this house” to “mosquito bites and shared toilets will lead to others in the family contracting the virus”.
I wish the media had said something about where she could go for legal and medical assistance. When Celina was thrown out by her family she did not know she had a right to live in her house or that she had the right to confidentiality. The right to information on HIV/AIDS should extend not just to the infected but to the public at large and in particular the media. The public impression is that you will not contract the infection if you are living with a goodlooking person or a well-known person. It is seen as a problem of the poor, the not so well dressed. The media are more curious about where and how you got the infection than about how you are living with it.
Why are media stories so negative? HIV positive people jumping off hospital buildings; widows of AIDS-affected being thrown out of their homes and villages. Important as these stories are in terms of news value, is there a fear that if you present a rosy picture of those living positive lives, the “preventive” efforts by government and NGOs may be reduced? Is there a fear that funding for HIV/AIDS will drop?
Even doctors are still ignorant about HIV/AIDS, says Celina. Most positive people are told by ill-informed doctors that their days are numbered if they are not on drugs. In fact, Celina says you can live for 15 years without drugs. “I stand before you as proof of my statement. By access to clean air and nutritious food, positive people can live long, healthy lives.” To Celina’s recipe for normal, healthy lives, Doe Nair, who runs a care and support home for positive people, has added another equally important ingredient: happiness. “Keep them happy and they will live longer,” she says. It is only when the immune system is down that you need the support of drugs.