World Aids Day: 'We fight for benefits but forget the issue'

On 18 November 2011, one of my Facebook friends wrote on her wall — "I want to thank each and every one who supported me last 18 years of HIV life journey.... thank u so much one again. I love You all."

Usually flooded with reminders of marriage anniversaries and birthdays, Facebook carried no message about my friend's 18 years of of tragedies and limitless struggles that made her a star — an epitome of courage and grit.

Born into a political family on 16 September 1976 in Assam's Nagaon district, Jahnabi Goswami was like any other girl with a closet-full of dreams waiting for the right time to manifest.

Destiny had other plans. Her father was killed by militants. Her marriage gave her HIV. She lost her two-year old daughter, Kasturi, to the condition. And she now lives a knock away from death with a smile that hides her many tragedies. "My life has its own meaning," she says.

Jahnabi is the founding member and treasurer of ANP+ (Assam Network of HIV Positive People) and the general secretary of INP+ (The Indian Network for People living with HIV/AIDS). She shocked everyone in 1995 when she admitted in public that she is a HIV+, the first woman in North-East India to do so. From then on, she dedicated her life to give others an HIV/AIDS-free world.

On World Aids Day, Jahnabi spoke to Firstpost about her hopes and fears, and her mission to spread awareness on HIV/AIDS. Edited excerpts:

How do you look back on the last 18 years of your life? You have undoubtedly lost many things; what have you gained?

Relentless crusader Jahnabi Goswami. Image courtesy Jahnabi Goswami

I never turned back during the last 18 years of life once I started facing my life boldly with the support of my family. You are right, I did lose many wonderful moments, like being a mother. That could never be brought back. At the same time, the confidence and will power I gained in the course of time... when I transfer to those who are in need of it, I feel satisfied; my life has its meaning.

What was the worst moment of your life?

When I lost my father who was killed by ULFA and then after my daughter's HIV + report was handed over to me by the doctor.

Do you ever think what life would have been like if you weren't HIV+?

Yes… Maybe... my dream since childhood was to become a good lover and a politician and help needy women and children. Today, even being positive, I have attained my dream. But I have not been able to fulfill my life as a good lover.

Do you blame anyone for the turn in your life?

I never blame my luck. I always blame our so-called social rules. Our society has not given any chance to girls to take decisions about their life.

The ULFA killed your politician father Hiranya Goswami. Have you ever questioned them why they did this?

I never questioned them. I am very happy about the peace process by some ULFA cadres. They should realise what they have done earlier in their lives.

Way back in 1995, the doctors gave you three months on this planet. How does it feel to have come this far?

I feel funny answering this question. Thanks to my mom, my sister and brother, my colleague, my close friends, people from my village, who have supported me to achieve what I have today. I can never forget them. Also, I want to thank science. Without medicine this miracle would have not be possible.

What does Kasturi's mother think?

As a mother, I always feel pain; I was not able save her life. In 1997, there was no medicine for children. Even if medicines were available, certainly they would not have been free in India. My economic condition was so bad that it was difficult for me to spend Rs 500 or less for a month of medication. At that time, the medicines were too costly. (Jahnabi's daughter was born HIV+ and passed away two years after her birth).

How do you motivate yourself? Where do you find hope?

I attended a national conference in 2000 at the India Habitat Centre, New Delhi where I came out with my status and I cried a lot. One boy came to me after I finished my speech and he laughed at me. I was surprised. He told me, 'I am also living with HIV, I never cried. Then why are you crying?' I was shocked to hear that, and thought how a person could lie. But he was right. He was Ashok Pillai (one of the founders and the second president of the Indian Network of People Living with HIV (INP+). For the first time, I saw someone who could laugh with HIV. After that, I never met him in my life. After a year, I think, I got the news that he was no more. He introduced me to INP+, which is my life today. Now I am the first women president of it. He is someone who showed me my path.

Coming to ANP+, when was it established and what have you achieved till date?

ANP+ was established in 2004. After the formation of SLN, there has been a vast change in society. The hospital accepted us, discrimination has come down.t Today, there is also free transportation for people living with HIV. There is also free investigation for us, many of us come out openly, some have got employment in government departments, children are able to go to school without any fear.

How are the government efforts under NACO and projects like the Red Ribbon Express helping in tackling the HIV issue?

It is to be admitted that the government's efforts under NACO and projects like the Red Ribbon Express have helped in spreading awareness about HIV. The same could be done in a more expansive way, like follow-up on the efforts initiated. More such efforts need to be continued; as positive networks, we would always be supportive.

A lot of people till today don't know the difference between HIV+ and AIDS. Given this scenario, how soon do you expect a course correction in terms of the stigma and opportunity in society for the affected?

I do agree to your point but at the same time, all these efforts are to be reciprocated with active initiation and participation from the public as well. As people care about the importance of vaccination, they should also realise the importance of voluntary testing. Only then these efforts will attain their goal. If anyone could guarantee complete cooperation from public, I could say, the course correction should be attainable within a decade.

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Are you happy with the media focus on HIV+ people? Where have they missed according to you?

Certainly we are happy about the media participation. As I said, there needs to be more participation. While they capture certain incidents of discrimination, they should go to the end of the problem and capture it.

What disappoints you in your fight?

While we fight for our benefit, we have forgotten about the main issue.

What are the biggest challenges in your mission — funds, slow government help, people's lack of concern, fear or stigma?

I can say all equally. Nowadays, international agencies consider India as a middle income country (and that hampers foreign funding). Yes of course lack of concern from some departments and concerned authorities is still seen. They do not understand some very critical issues, like lack of government schemes and education and health facilities for HIV+, delay in judgement cases of positive people. We also cannot deny the fear and stigma. Still many people feel if they ask for my their rights, they will lose everything.

You are also active on Facebook. Have social networking sites helped you gather momentum in your crusade? If yes, how?

Yes I have many international friends who are working for the cause and I am able to get more knowledge about the same.

With no cure till date, how do you inspire the affected to face life? Don't they feel you are lecturing them to fight a losing battle?

I am actually shocked by your question. When everyone knows they are going to die one day, do they leave the hope to live, same is the case for HIV infected people as well. Life needs to be looked at more optimistically. HIV, in fact, just weakens our immune system and makes us vulnerable to many other diseases. If we try to accept that HIV is just a virus, and that we need to streamline our daily routine and practice some good exercises to keep both our mind and body healthy, we can still live and enjoy the things around us.

You are a Congress member like your father was and you were denied a ticket last time to fight the polls. Did you feel let down? Why were denied one?

It is actually the second time it has happened. It could never let me down. Why my ticket has been denied is to be decided by the party high command. I have full confidence with my party that one day, they will recognise me and my work.

What is your biggest fear?

My biggest fear is that we are unable to prevent zero new infection for the new born baby.

Do you believe in God?

For me, hope is God.


Updated Date: Dec 01, 2011 10:28 AM

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