Last week, one of my colleagues (Ramappa, name changed) shared with me that he had recently lost his sister to HIV. He works in a care centre (Asha Jyoti) providing physical care to people who are very ill. He was in such grief, saying he has helped so many people in end stages to be comfortable and have a better quality of life; the centre had helped so many people to recover from opportunistic infections or ART side effects, but he could do nothing for his own sister.
Her father in law had said that she should not seek treatment as that would lead to disclosure of her status and loss of family prestige. Her brother in law who was studying medicine in Bangalore had told the family that there was no cure and they should not bother taking her for treatment here and there. She too had conceded. The result : she died when she could have lived.
When we started discussing this story in the team, so many such instances came up where people had been able to help strangers, but had hesitated intruding into their family's hidden situations. Sometimes, they had tried, but were not heeded. Family prestige, family honour and the impact of stigma on the other family members were reported to be the barriers. We, as people living with HIV or as families with a HIV positive member are worried about the loss of prestige. What is the loss of prestige compared to loss of life? Which is reversible? Which is more precious to us? Is this just? Can we sacrifice our lives or that of others to a notion of social rejection?
What can we do as family and community members in small ways and big to build our loved one's trust in our inclusiveness? How can we show it? As people living with HIV, how can trust that our loved ones will not reject our desire to be healthy and to live. This Community Action Day, we are exploring within ourselves and in our communities, what we have done that can inspire others and what else do we want to do.
Please join us in this quest...share your experiences, and let the inspiration flow.....