The AIDS Related Stigma: an Account

stigma-774832.JPGA short while ago, I had gone to the hills with my mother who was doing a project on HIV- AIDS. She had planned an interview with Radha (name changed), a middle aged woman suffering from the stigma associated with being HIV positive. This stigma is known to a majority of us basically through a written account or a movie. To a minority it is familiar too, having had witnessed, practiced, let happen or suffered it ourselves. This story is one of the most revealing stories I have ever been acquainted with and summarizes the entire AIDS related dilemma in India.

That area of the hills, where we came across this woman, was an extremely poor and backward, with very few telephones and sparse agreements with modern day developing India. Farming was the major occupation and literacy levels were extremely poor. Some years back, Radha was forcibly married off to a man who never kept well. The man had been ill for a long time and his health didn’t improve after the marriage, confining him to the house. Radha, thus, became the main bread earner. Years passed this way. They had a daughter. Her husband’s health never got better and the local dispensaries he frequented dismissed him with symptomatic treatment.

After a while, his illness got so severe that they had to come down to the plains to have him observed. It was here that he was found to be HIV positive. As a next-in-line measure, Radha’s blood was tested and found to be infected with the retrovirus too. The child, by god’s grace, was safe.

When they got back to the hills, instead of staying at the village where they knew they would be hated, they stayed at the husband’s sister’s house. The behavior of the sister was hostile and the treatment they got there was indifferent. Very soon, her husband’s condition deteriorated so immensely that when a Christian priest serving at a nearby missionary centre came to know of it, he immediately advised them to go to Lucknow where they would get proper treatment. Her husband lived for eleven more months. The ignorance of timely treatment by the hill dispensaries cost him his life. Photographs of this short stay in Lucknow prove that it was one of the happiest of their lives.

Radha and her daughter came back to the village where they owned a house. This is where they were totally neglected and hated by the neighborhood. No one talked to them or gave them any help of any kind. Even the daughter was forced to go without milk as no one bothered to feed her. The society was entirely oblivious to their existence. Radha toiled in her fields and slept at home- she was determined to live on and make her daughter’s life happier than hers had turned out. Also, she didn’t want her husband’s family to get the property as long as she lived.

We had the address of her husband’s sister’s house. Once there, we were informed that Radha, whose house was further higher up in the hills, had sprained her ankle and would not be able to come down to meet us. As we later found out, her ankle was fine and this was just a deterrent conjured up to stop us from reaching her and getting the real story. We were given a severely manipulated story – one I am sure must have been employed to convince many other people. Having had come this far, my mother was determined to talk to Radha in person.

We walked up the mountain and came to the village where Radha lived. Once we got to the village, the village Mukhiya and his bunch of village ‘wise men’ began evading the topic and discussing politics and water harvesting issues instead. No one wanted Radha’s story to be exposed to the world.

However, our persistence paid off. Several shocking details were uncovered during this meeting with her; including the fact that her husband’s sister had insured her brother’s life and according to the policy she would be getting the insurance money. Also, Radha was fairly certain that his sister had known of her brother’s condition prior to marriage and yet let the marriage happen. The sister had effectively used her brother’s illness for her own personal gain, Radha’s life being immaterial.

Having been brought into notice of the UNICEF now, free medicine is in process of being provided to Radha. Furthermore, documentaries aiming to sensitize the population of the area to the injustice of this discrimination have been shown by woman Sarpanch. The result of these efforts remains to be seen and hopefully such accounts will be things of the past soon. But seeing the level of ignorance of the people, and unwillingness to accept the fact that such a thing to could happen to anyone, will make sure this ‘soon’ will not be coming in the immediate future.

As of now, Radha still lives there. A figure of resilience, an icon of inner belief and strength, in her little house; working in her farms and taking care of her daughter. Her life still remains secluded but has improved with a few people accepting her now and talking to her. Her aim remains intact: to guard the house that is hers and to give her daughter some hope of a better life. The village’s older men continue to want her and other ‘such’ women gone from there. Others respect her caste, Brahmin, while still despising her condition.

Some have learnt to accept her, others still might try, most will never learn to co-exist but she will not give in. With no means of communication and no one to go to for help, her strength and hope for the future is unbelievable and tremendously inspiring.

Kabir Sharma