86% people in all countries believe that shame and stigma around HIV/AIDS keep people from talking about and addressing the disease and that both are a problem contributing to the spread of HIV. Only eight per cent of Indian respondents admitted to personally knowing someone who is HIV positive. (Source: New Global Study from the M·A·C AIDS Fund )

Long trek to empowerment
From testing HIV positive to enduring the subsequent stigma and depression, it has been an arduous long trek towards empowerment for Salam Udita, 40, and many other women like her, who suffer from HIV/AIDS.

In 1989, when she was in her second year of graduate studies, Udita married her boyfriend, a drug user, much against the wishes of her family. Her parents and relatives were concerned about her well-being — after all they were part of the many people in Manipur who were awakening to the evils of drugs dependency in the state.
Six months later, Udita’s husband suffered a relapse and the young bride was back at her parental home. The separation stretched over two years during which she completed her graduation and a diploma course in special education in Bhubaneswar, Orissa. It was only in 1991, did she return to her husband’s house — after abandoning her BEd course mid-way.

Between 1995 and 1997, Udita bore a daughter and a son. Unfortunately, the boy was a sickly child and diagnosed with bronchial pneumonia in his fourth month. He also tested HIV positive. “Initially, my husband hid the news from me. I thought my son was going to get well. But he died soon after being discharged from hospital. I’ve lost my child. I have come out in the open so that others don’t lose their children,” says Udita, currently the joint secretary and board member of the Manipur Network of Positive People (MNP+).
“I never thought HIV would enter our own house. It was only in 1998 that I also checked my status and tested positive,” she recalls. A period of anger, depression and denial followed the HIV/AIDS results. “I didn’t tell anyone, initially. After I started working actively for MNP+. I simply wasn’t bothered about whether or not people knew. I stopped hiding,” says Udita. She revealed her positive status to her friends and family only after she began working full-time with MNP+ in 2002.

Talking about women living with HIV/AIDS in Manipur, she says, “There are many women who are the sole family breadwinners. In fact, the husband is, instead, an economic burden, demanding money for his drug doses. The wife has to ensure that there is food on the table for the children. Many women, unable to meet this economic burden, take to walking the streets, earning a living as sex workers. In such a situation, the risk of transmission increases. Therefore, to reduce HIV, we need to increase the economic power of women and focus on income-generation programmes. To save Manipur from extinction because of HIV/AIDS, we need to focus on women.”
Unlike many other women, Udita has been lucky. Meeting up with the right people encouraged her to come to terms with her infection. She resolved to do something for those suffering from this deadly disease. “In 1998, Ashok Pillai and Geetha Venugopal of the Indian Network of Positive People (INP+) came to Imphal. We got a chance to share our stories with them. There were many of us at the meeting, but very few had come out in the open about their HIV status, though amongst ourselves we knew. After that, whenever MNP+ called us for a programme, we (her husband, she and some other women) would go,” she recalls and adds, “What helped me most in accepting my HIV positive status and empowering me was the peer counselling.”
Thingnam Anjulika Samom, (WFS)

No answers, only questions
We’ve met before at get-togethers organised by the Make A Wish Foundation where she and her children are treasured guests and I have been a volunteer. And every time, you can’t but notice a certain quietude about this dignified young woman. Is it pain? Or is it resilience? Who am I to interpret, anyway?

 We meet again with smiles and namastes, at the Naz Foundation office in Delhi. The occasion is different. I am there to hear her story. Preety (all names of the family have been changed), is just 27. That’s an age when several young women around her in this bustling city have dreams in their eyes. Preety has been married for 10 years now.

 When they chose Amar, her parents believed the man nine years her senior was a suitable match. He had a job with a private concern and he was from the same city. Their daughter would not go far from them.
For the first eight years, her parents were not wrong. Three years after the marriage, their son Yatin was born. Three years later, little Asha arrived. The family was complete and happy. If anything niggled, it was Amar’s occasional bad health. Apart from regular, almost constant stomach problems that abated with medication, Amar was a caring husband. 

The winter of 2006 changed it all. Amar was down with an incessant cough and a terrible cold all through the winter. He went to one of the major governmental hospitals in the city. The doctors suspected tuberculosis. But the tests proved inconclusive. Amar’s employer, whom Preety describes as a caring man, got his doctor to check Amar, and paid for the bills.

Amar was detected HIV positive. Shocked, he kept the news from his wife and children. But the doctor wanted his wife tested. When Preety tested positive, she was stunned to learn that her husband was also infected. They had the children tested. The doctors’ worst fears were confirmed. Both are HIV positive. However, Preety says with something akin to relief, “Their CD4 count is alright. They don’t need medicines yet.”

It is five months since her world turned topsy turvy. Amar lost his job, although his employer was discreet in the way he was dismissed. First, he advised him to take a few weeks’ rest. Then, he kept deferring the date that Amar could join back. “I don’t know why,” wonders Preety with touching naiveté, her voice trailing off.
Finally, Amar found himself a new job that he has just joined. He virtually drags himself to work since his legs, particularly the ankles, pain making it difficult for him to walk. The family managed to survive the past five months that he has not brought home a salary by selling some jewellery every time funds fell short.

Once, Naz Foundation helped out with some provisions. When Amar was very ill, Preety turned to his family for help. His brother lived in a rented room next to them. When he learnt the family was HIV+, he moved out of the neighbourhood. Little wonder, then, that Preety has not informed her parents.

Does Preety hold any rancour towards her husband? Her reply takes you aback. “How can I say that he infected me? I could have infected him. Yatin was delivered by a Caesarian operation and I was given blood transfusion.” This blood may have been contaminated, she points out.

Today, Preety lives in constant fear. “What if people get to know that we are HIV+?” she asks. When your own move away, how will neighbours and the new employer react?

 There are no answers. Only questions. Preety shows no bitterness at the hand that life has dealt her. As we leave Naz Foundation, she closes the gate behind us and waves goodbye. They walk away, a young woman and her two little children, melting into the hurly burly of life beyond. So like you and me that no one gives them a second glance. If they did, they’d see only the apparent: a healthy young woman and her two playful children squabbling over a phone.

A numbing reality lies beneath that calm demeanour. A reality that can be changed only with a breakthrough in medical science. 
 Benita Sen

A reason to live
Rukum, (name changed) 30, is from Manipur. He has travelled a long distance, physically and emotionally. A reformed drug user, Rukum, contracted HIV — something, unlike his addiction, he can’t get rid of. He looks back at his life with remorse and guilt. “By the time I turned 20, I was a hardcore drug addict. I ran into trouble with the police and law enforcement agencies several times and was jailed. Then there came a time, when they gave up on me. My family was fed up because I had been to so many de-addiction centres and came out with a fresh drive to inject drugs. I was a gone case. In between I contracted HIV through unsafe syringes. We used to share needles because carrying individual needles wasn’t safe. Police would catch us,” said Rukum.

His journey through his addiction and infection made him despondent. “When I tested positive the health worker told me that I had only two years to live. I was numb and I didn’t know what to do. I felt nobody needed me or cared for me. Nobody trusted me and wanted to be seen with me. I had reached the end of the journey when suddenly life took a turn for the better. I decided to give up drugs and started working at a de-addiction centre in Lucknow. A friend of mine was running a care home for people living with HIV/AIDS in Bangalore. He asked me to come down,” said Rukum.

Rukum is now working for Society for People’s Action for Development (Spad) in Bangalore as a health educator. He visits de-addiction centres, educational institutions and conducts sensitisation programmes on HIV/AIDS, alcohol and drug abuse.

“In my work I found that most alcoholics and drug addicts think that they are safe from HIV. When one is under the influence of drug and alcohol, it can affect their judgment. They became bolder and indulge in unsafe activity. Drugs addiction is a disease, and not a moral failing,” he said.

Rukum has found reasons to live. “The health worker’s prophecy proved wrong. I wish he hadn’t give me the death sentence. I would have studied more and saved some money. But nothing matters any more. I am living with HIV not dying from it. I look forward and appreciate God’s gift of life. People living with HIV need social support, direction and empathy and not charity. Discrimination is hard to stomach as ignorance lies in its core,” he added.

On a new journey with new hopes
Rosy was born in a poor family. Soon after her birth her father died and she was raised by her relatives. “I changed places several times and lived with different relatives. My childhood wasn’t normal; I was sad and unhappy. I grew up to be a serious person. One day at my usual bus stop, I met a bus conductor and I befriended him. He asked me the reason behind my sadness and I shared my story with him. He offered to marry me and I agreed. He told me that he was already married and that his family lived in Mysore. I got married to him and stayed back in Bangalore. He was emotionally very caring but didn’t give me any financial support. I gave birth to a girl child. I took up commercial sex work for obvious reasons. Four years ago, I fell sick and Spad, an NGO, got my blood test done alongwith 12 other commercial sex workers, who are members of Vijaya Mahila Sangha. Unfortunately for me, I was the only one, who tested positive. Later, I asked my husband also to get his blood test done. Even he tested positive. Luckily our daughter and his first wife are negative,” said Rosy.

She gave up hope on life, but Spad gave her reason to live. “They counselled me and appointed me as a peer educator to address the issues of other female commercial sex workers and educate them on health, especially HIV-related issues. I find a purpose to my life. My daughter is being looked after by my husband’s first wife. It’s a new journey for me,” said Rosy — now the executive member of Arunodaya Network of Positive People in Karnataka.
Bala Chauhan