December 1, 2011
World AIDS Day
Man is a social animal and cannot live without society. You may say it is a clichéd statement. I agree. Living in a society entails certain 'accepted' norms and those who are labeled as 'different' find living difficult and the going tough. Here the term 'different' refers to those living with HIV AIDS and many studies have indicated that stigmatization associated with HIV, one of the most complex and deadly health problems confronting the world.
In undivided Dakshina Kannada, which prides itself as the land of the intelligent, people, especially women with HIV AIDS have struggled come to terms with their changed lives, changed due to circumstances.
They led a lone battle to alter society's attitude and have succeeded to a great extent though a large majority of the infected still prefer not to open it up to the society for the 'stigma'. This article is about the two gutsy women who braved the society to come out in the open and then help people who are faced with the dilemma of 'to live or not to live' in a society which treats them 'differently'.
Veena Shetty's Reality with Life
Take the case of Veena Shetty, whose life turned topsy-turvy within a period of 10 years between 1993 and 2003 soon after marriage. Now, at 40 she feels has gone through it all and her eyes moist when she recounts her life, though she tries not to let it rankle her. Veena who belongs to a well to do zamindar family from Haladi in Kundapur was married in 1993 at the age of 22. Like any other young girl of her age she left for her husband's place in Mumbai full of dreams only to be crushed under the weight of the burden she faced with in the course of next few years. Her husband was working in the gulf and two children were born to them in quick succession. The constant ill health such as diarrhea, skin and other diseases of her husband resulted in them coming to their native do some business locally.
A test in the district hospital in Udupi revealed her husband was HIV positive, which Veena's young mind found difficult even to accept as true. Somehow she harboured a “HIV does not come to people like us” kind of feeling. “Even if there was HIV related news in papers I never used to read it thinking it does not concern me. Even now we know people who change the channels if there is an advertisement related to HIV or AIDS. I belonged to that category and I just cannot imagine how unapprised I was”, she recalls, not forgetting to add that she comes from a family of doctors as her father and a brothers are doctors.
“I remember my mind was not in its sanity to know what HIV is all about. My dreams lay shattered in front of my eyes. I had thoughts of committing suicide with no courage to face the society because of the stigma. I had two young children to take care of. Even my husband's family shunned me because they were also ignorant. It is difficult for me to imagine how I survived that ordeal those days”, she explains. Her husband died in 2003 leaving her with two young kids and only after his death she decided to undergo HIV test which was found positive. Though the fear was lurking inside her ever since her husband's condition, it was proved by the test. If not for the support and encouragement of her family, her father and brothers, Veena would not have been able to face the world. She is not even on ART treatment as her CD counts are above the prescribed levels for ART treatment.
After her husband's death the news spread about his death due to AIDS. The society was also unkind as she faced a kind of torture, a feeling of being unwanted, rejected and someone who is constantly viewed with suspicion of having done something which is repulsive and fiendish. “In our system after the death of husband a woman goes back to her mother's house and I had to fall back on my family. Luckily, my family embraced me and my young children and I was never given a feeling of being a burden. My family especially my brothers encouraged me to go out and lead a normal life which was responsible for my picking up the threads of my life”, she explains.
In Udupi District hospital she was counseled at the Integrated Counselling and Testing Centre (ICTC) where she came across Dr Sharath Kumar who her the confidence and support to face the world head on and work towards helping those who face similar situations. Slowly she started to believe in heself and even began to counsel other HIV positive people. She saw that “'people who were poor and led an ordinary were able to come to terms with being HIV positive because they had no other alternative” and then resolved “if they can do it why not me”. This led to the setting up of “Jeevana Sangharsha” with the help of Dr Sharath and other HIV positive people in 2003 and also coming out openly about being HIV positive. Why the name “Jeevana Sangharsha” (JS), when you have overcome the struggle, I ask her. “For people like us it is a life-long struggle despite the change in attitude. When people come to know they are HIV positive they are mentally upset unable to accept it has happened to them and our organization helps such people who are prone to anomie”.
Miasma of Ignorance
It has been a struggle for Veena and her entourage as they were often ridiculed and even asked to vacate from their premises on many occasions as if gathering of HIV patients in once place meant transmitting the disease. Today Jeevana Sangharsha operates from its office at Tulunadu Towers, near Court Road in Udupi. Veena Shetty is the project coordinator of the organization which has a membership of over 1800. From 2007 Jeevan Sangharsha has been given the responsibility of Drop-in-Centre (DIC) project of Karnataka State AIDS prevention Society. DIC true to its name reaches out to those who drop in seeking solace and support and provides material, tips to change lifestyle and even provides nutritious food. There are 8 people who work at JS. Veena travels everyday from Halady Kundapur (1½ hour journey) to be at J S six days a week to be available at the centre.
JS now concentrates on spreading awareness which is the key to prevent the disease. “We are going to villages where newspapers and TV channels will not work. I know one family in Karkala where all the 5 members (parents and children) are HIV positive which could have been preventable if there was awareness. We are channelizing our efforts in that direction”, Veena says. When I further commend her for her fortitude, her resilience and the vigor with which she goes about her task, she just brushes it aside saying it is part of her life. “In this world only life and death are certain and we have to live in condition as long as we are able to do it. One day we all have to die. Instead of spending our lives becoming useless and burden on others, I decided to work for the cause”, she states. I could trace the suppression in her choked voice.
Over the years there is a sea-change in the general attitude of the society towards such people in our country. But, it is not enough. People like Veena have surely played a major role in bringing about these changed perceptions to make a difference to the lives of others.
Shanthi's Baby Steps towards Positive Life
Just as I was trying to digest the valor and fecundity of Veena's efforts I come across another indomitable woman Shanti Noronha, also from Udupi, who faced a situation similar to Veena's. This diminutive woman belies her personality and comes across as a strong-willed lady and full of life, who faced the challenges with a steely resolve and tasted success. She runs Deepa-Jyothi Network of Positive People at Kannerpady in Kinni Mulki which has 1514 registered members. It was her positive frame of mind and her steely nerves which helped her to fight the battle against discrimination.
Shanthi, 36, who hails from Shirva had her dreams crumbled soon after marriage. At 18 she was married to a man from Shirva but born and brought up in Mumbai. Her husband had come down to Shirva and running a store and was also working as LIC agent. Within 3 months of marriage she became pregnant and when she was six months into pregnancy, her husband revealed her he was HIV positive. It was only then Shanthi realized why doctors and nurses were treating her differently in the hospital where she had to undergo many tests.
I ask her whether she suspects her husband having prior knowledge of his HIV positive status. Without showing any emotions of being deceived she says “he had failed medical test to go to Canada which means he knew. But she bears no rancor and says “we were more like friends and not as husband and wife. When we came to know about the disease we decided to die together because those days everyone believed HIV AIDS means death. We were also ignorant to the extent that we did not know how it spread or how to prevent it”. Even she had the same views like 'HIV does not come to well educated and good people'. So when her husband hinted he wanted to talk she was taken aback. “We had not lived apart even for a day after marriage because we were quite attached”, she recalls that moment. Even when he told me he is HIV positive I could not believe. But seeing the frustration and how bad he was feeling I realized what the family was into”.
Shanti was married in 1994 and her husband died in 2004, which means it took a mere ten years for her normal life to become turbulent and turn upside down. The family was living with her mother-in-law who too began to discriminate because of the embarrassment and ignominy associated with the disease and also due to ignorance. “People were saying we should not stay closer but I did not know what it meant. Nobody explained us how the disease spread or how to take preventive steps”, she states. She was also an expecting mother at the time. Doctors had suggested aborting but she did not yield. The couple listened to all the negative stories about the unborn child instilling fear psychosis in them.
The child was born in 1995 and the first thing she remembers asking the doctors is not about the gender of the child but about its HIV status. It was a boy and doctors told us it takes two years to know about it. “Spending two years was awful experience because we were made to believe our child will not grow, will not be able to speak or walk and all that. So every day we were measuring his height and keeping a watch on his growth”, she recalls with a tinge of nostalgia. But it was this child which gave the couple to urge to live and carry on. Shanthi remembers that her husband had brought some poison and we had decided to consume it together. “When the child began to grow and do normal activities we began to postpone the decision and when it began taking its first baby steps, we took the steps towards rebuilding our tattered lives”, Shanthi narrates.
Shanthi was tested negative for quite some time and who knows she would have been negative if only she knew the disease spread through sex. A second child, a boy was born to the couple in 1999 and life went on. She says “We began to feel we can live with the disease. But we went to many places to try all sorts of medicine. Most of our earnings were spent on this. Luckily the land was in my mother-in-laws house and hence it is saved. Otherwise even that would have been sold off to waste on all sorts of medicines”.
But she was faced with the harsh realities of life when her husband began to encounter health problems one by one in 2004. His vision was affected first and he also had leg pain. On checking it was found he was highly diabetic and due to the diet he was afflicted with tuberculosis. He was brought home and was in coma. “People used to come in hordes to see him as the word had spread about his disease. It was a kind of torture, a sickening feeling from which she could neither escape nor get rid of. Even sending the children in the neighborhood were a painful and heart wrenching experience for her. Relatives had also shunned them and she had only her mother to rely on for support at this critical phase of her life.
When Shanthi began to accept her status and started going for counseling she was reconciled to the idea of living with the virus and was determined to live facing the challenges. Before the death of her husband she did not know the enormity of the disease but on seeing his suffering she realized the seriousness. She was put on ART treatment as her CD count had reached 120. In 2005 she registered her organization Deepa Jyothi to work for the welfare of HIV infected people. She began to read about HIV and once attended a training session organized by Karnataka Network of People Living with HIV AIDS. That training gave her the required know-how to ascertain her rights which helped her to fight the battle ahead.
Winning Hard Fought Battle
It was a lonely battle for Shanthi when there was a move from the school of her children to pressurize her to remove them. In fact the school administration was pressurized by the parents of other children attending the same school. It was a new school and the principal asked Shanthi to produce the report of her children's HIV status. Though her children had tested negative, she did not want to succumb to such a move as that meant plying with the life and career of children. She decided to fight as she was aware that HIV positive people had the right to lead a normal life like other people. “It was the media and the education department which helped me to face it. Even the District Health Officer used to come to my house and enquire about our problems. Through their help they were able to convince the working committee of the school about the danger involved in discriminating her children”, she stated.
From 2005 onwards Deepa Jyothi is handling the project of Global Fund Round 6, of which Shanthi is the project co-ordinator. There are 5 counselors to help HIV positive people who come for counseling and seek other help. They spread awareness and conduct monthly meetings in Kundapur and Karkala apart from Udupi. Deepa Jyothi also runs Self Help Groups to make affected people self dependent.
Her only advice for those HIV positive people is “be positive in attitude which means half the battle is won”. For Shanthi it is almost like winning the battle hands down. Her main aim now is to spread knowledge and remove the fears from the minds of people. She also wants to live till she is able to ensure that her children are able to stand on their own. Considering her positive frame of mind and battle-hard outlook she will continue to inspire and provide succor to people who are in need of it for a long time.
The life and spirit of these two indomitable women and scores of others who work with them shows that life is a challenge that needs to be fought with determination and with positive frame of mind. These women needs to be saluted for the gumption, the courage and determined efforts though they faced the challenge and made difference to the lives of many like them. Of course they made the difference and we as a society can help in whatever little way to make it zero.