December 1 was World AIDS Day. This day marks the struggle for unity of 40 million affected by AIDS across the world. A struggle to fight the spread of AIDS. A fight to end prejudice against the HIV positive. Shobha Warrier interviews K K Abraham, who spearheads the Indian Network of Positive People:
A flashback to 1993
K K Abraham, a young man working as an instructor in the Indian Army Education Corps, had a viral fever. The fever went on too long for it to be ignored.
Abraham was sent to the Military Hospital Pune for further tests and treatment. The fever still refused to go away and the doctors decided to do a test for the HIV virus.
Abraham was so worried he could not sleep after the test, wondering, 'What if I tested positive?'
Two days later a nurse came to him with the news: "You must forget the kind of life you have lived so far and think of a different tomorrow. You may not live long. You are suffering from AIDS."
The next two weeks Abraham remained sleepless.
He was racked with worries and foreboding. "It was such a huge shock to me. I was very upset. I thought to myself: 'My god! How did I contract such a disease?' I was more worried about how society and friends would react to my status than the disease.
"There was no counselling given before the news was broken to me. As you know, in those days, there was a lot of stigma attached to the disease. What helped me tide over the depression were the 20 odd young men who were there and had tested positive. We formed a group and shared our fears and worries," remembers Abraham.
Once he was discharged from the hospital in Pune, he went home to Kerala and broke the news to his brothers. But he did not tell his parents because he didn't think they would be able to take it.
Though his brothers were very understanding and supportive, he decided to start life afresh in Pune, not Kerala. He had been already asked to leave the army because not only was he HIV positive but he had tuberculosis as well. "If you are only HIV positive, the army will not send you out. But I had pulmonary TB too. It required a lot of effort to accept the fact that you were HIV positive. So, you did not have the courage or knowledge to argue your case. You could only listen to what others said. You had no power to react. That confidence would come only with experience and years of living with the virus."
2006
"Society has matured enough (today) to accept people living with HIV. It is possible only because of the work done by various networks," says Abraham
But...
In September, Abraham journeyed to Bhubaneshwar, Orissa to organise the annual general meeting of the Indian Network of Positive People, an organisation he represents today. He was shocked when he was told that the delegates would not be allowed to stay in the hotel he had chosen.
"The managing director of the hotel told me I could stay there but not the delegates. He said (the hotel) would have to burn all the towels and bed sheets used by HIV positive people! I think he is a man who has an MBA. I felt pity for him. Not anger. He showed his ignorance, that's all. I have travelled all over India and stayed in many hotels but this was my first experience (of this kind). Stigma does exist even today, not just in rural areas but also in the so-called low prevalent states where we do not do much work."
Abraham remembers, with a smile, that the hotel MD did not associate Abraham, who looked healthy and fit, with someone who was HIV positive. "There are a lot of misconceptions about what people living with HIV look like. To change that, many HIV positive people should come forward."
Abraham also explains that even those knowledgeable about the facts of HIV make moral judgments. "They come to the conclusion that you are a person with loose morals. Even today, they think that the virus is spread only through sex workers. Most ordinary people are not aware of homosexuality. So they don't look at you as gay! They think that we got the disease because we were immoral. I think this attitude has to change first."
Meeting Ashok Pillai
Abraham met Ashok Pillai for the first time in the Army Hospital in Pune. Together they struggled to form a group and a voice for those diagnosed as HIV positive. They were finally sucessful in 1996 when the INP Plus came into being in Chennai with Ashok Pillai at the helm. Ashok became the first known face of HIV positive people in India when he modelled for a poster for INP Plus.
In 1998 Abraham was invited to join the INP Plus team. When Ashok died in 2002, Abraham took charge of INP Plus.
Did taking over from a more high profile activist pose a huge responsibility for Abraham? "Not at all. I took it as a challenge. I had been working with INP Plus as a board member from 1998. I was trained to take up responsibilities. So, it was not a scary proposition to step into Ashok's shoes. It was challenging to expand INP Plus to new horizons."
Today INP Plus has more than 40,000 members, the largest such group in the world. It has a presence in 22 states and 150 districts across India. INP Plus's mission is to improve the quality of life of all those living with HIV and AIDS.
Says Abraham, "Advocacy is the life of INP Plus. Advocacy is not possible without people. That is why we want to have a huge network. Networking is our motto. By networking, we can take care of the problems that people living with HIV face and provide quality life to them."
Abraham dreams of a stigma-free, economically independent life for all HIV positive people. "Today, HIV positive people are always under tremendous tension to sustain the job they have. Most continue working without disclosing their status. What I dream for is an atmosphere free of such tension."
Dreams
INP Plus is Abraham's life. He has dreams only for the organisation.
"I am totally detached from my family. It is not that I don't take care of my parents. I am a responsible family member and I do my duty. After working in this field for years, I feel there is a life other than getting married and having children.
"The life that I lead is more meaningful. It is not out of choice that I reached here. It was by chance. Now, I cannot even think of having another life. Many of my friends are married and they have negative children. But this is the path that I have chosen. I travel all around India and I have seen people suffering and my mission is to do more for INP Plus."
Away from INP Plus Abraham spends his time watching cricket matches and movies. He is a newspaper junkie, who does not put down the daily papers till he has read every single word.
He feels one of the only Indian films made sensitively on people living HIV was My Brother Nikhil. "Even homosexuality was dealt with very sensitively in the film. We should have more films where people living with HIV lead a normal life and not die in the end."
Life with ART
With the advent of Anti Retroviral Therapy a person living with HIV can live up to 60 years pretty much like any other normal human being says Abraham. "I have seen a 60-year-old man who has been HIV positive for more than 25 years. It's all possible only because of ART. There are more than 40,000 people taking ART, given free by the government from 2004. But ART is the last resort. It will take 10-12 years for the CD4 count to go below 200."
Abraham has been treated with ART since 2002.
Respecting a virus
Abraham is a god-fearing person. But he doesn't believing in praying to god daily. Or asking for favours. He has never asked. 'God, why did this happen to me?' he says. In fact, he looks at his state as a 'positive' one.
"I am travelling a lot these days because of this virus. I am giving interviews because of this virus. So, I think I have started respecting this virus for making me a more positive person!
"I don't want to have any enmity with the virus. I call this virus, my friend. The fact is, we have to live with this virus. So, it is better not to worry about it and the consequences; instead look at it as a positive development. This is what we tell everyone."
Photograph: Sreeram Selvaraj