"You realise that the disease eats away at your very being. I’ve seen many girls come into Budhwarpet completely healthy, and then slowly, become sicker. Before HIV, I thought being positive was a great thing," says Ranjana Devi.
Devi is not HIV positive, but she oversees the workings of a community organisation in Budhwarpet in Pune that administers health and social welfare services for female sex workers — a group that is immensely vulnerable given the nature of their work.
I meet Devi and many others like her in October 2015 during a capacity building workshop for leaders from various community organisations. And thus, began my annus mirabilis of working with over 1,20,000 key population individuals, through 84 community organisations, vulnerable to HIV and AIDS, consisting of female sex workers, gay men and transgenders.
Sarala Tai, a board member of another community organisation, is carrying an eight-year-old "positive" girl. This girl’s mother was a street-based sex worker in Kolhapur, who died due to the lack of access to antiretroviral therapy (ART). In between the workshop, Sarala Tai tells me: “Aisa hi hai na, Madam. Yeh auratein chali jati hain aur bachha mujhe chhor jatin hain. Kya karungi main iska? Kaam bhi nahi sikha sakti (These women die and leave their children to me. What will I do with her? I cannot even make her learn the trade)."
Months later, in Rajamundry in Andhra Pradesh, I sense no despair in Nupur, a helpdesk facilitator. “HIV paas laya hum sab ko. CO (community organisation) kaise hota phir?” (HIV has brought us together. How else would our CO have existed?).
Harping on a similar note, in February 2016, Malavika, the President of the Idayam Thirunangaigal Munettra Sangam (ITMS), Namakkal — a community organisation for transgenders and gay men tells me: "(...) programme ne pehchaan di hai, madam (the HIV/AIDS programme bestowed us with identity)."
Stigma and discrimination is an everyday reality for the vulnerable
What I know of HIV and AIDS is through occasional field visits, pivot tables and legal declarations. With a background in gender-based violence in conflict areas, my lens is generally myopic — I often look at violent incidents against community members isolated from the looming lentivirus itself. But this is fast changing. Every day, stories of unbearable stigma and discrimination is slowly opening my eyes.
Obula, president of a female sex worker community organisation in Kadiri, Andhra Pradesh, recounted an incident of child sexual abuse in her jurisdiction from two years ago. The child was raped by influential people and left to die, she said. No stakeholders — neither the police nor lawyers from the Legal Aid Clinic — were ready to help because her mother, a sex-worker with an HIV positive status, would never stand a chance in front of a politician’s son.
An HIV positive sex worker in Sholapur, Shahnaz’s life’s earnings amounting to over Rs 3 lakhs were taken away by her gharwali — the brothel madam — because she was a victim of the disease. The gharwali emotionally and physically abused her in the course of the recovery of the money. The community organisation’s members stood by her side throughout the process of reporting the crime and battled the stigma and discrimination. And in the end, she received her money back.
"People who are affected by HIV are all living with an inferiority complex," says Surbhi, who is gender-fluid and HIV positive. “They don’t say it openly, but I have said it. As far as I am concerned, I don’t have anything more in life. I have to be open. Basically, I’m an open type of person. Everybody knows, that I talk openly. So, I will talk about everything and put up with everything. If anyone beats me, I will take it, if someone scolds me, I will accept it. But everyone will not be like that. People who live in society, live under the blanket of prestige. I’m not in that blanket, so I don’t take it as something big,” she adds.
Community Organisations Born out of HIV Programmes
“The disease has claimed lives but it has also given us each other. This condition brings friends. I plan to write poetry on this and share with you,” says Vijji from Thiruvallur. Vijji is gender-fluid. She has lost a few friends to the virus, and finds solace in art and poetry.
A constant victim of ridicule and discrimination, Vijji was always different and understood the trauma of the HIV-positive population. “Community organisations help overcome the trauma and look ahead towards the future. Ironically, community organisations would not exist if HIV did not. It is odd, isn’t it?” she says.
Ushodaya Mahila Sangam (UMS) is a community organisation for female sex workers in Telangana. A total of 13 People Living with HIV (PLHIVs) are a part of UMS, and the team at UMS wanted to ensure a sustained arrangement of nutrition for them. They reached out to the Mandal Revenue Officer who in turn helped connect them with the Ration Dealers Association. The Ration Dealer Association and the team had a meeting where UMS explained the concept of vulnerability reduction to the president of the association and discussed how he could help them do more for these 13 most vulnerable. Since then, UMS has been receiving rice and wheat for its PLHIV members from the members of the Ration Dealers Association and an unflinching support from its president on all occasions.
Then there's Sree Shakti Sangam (SSS) in Tirupati, which moved mountains for an HIV positive couple who fell in love and married in 2011. The SSS team reached out to the couple when the man's CD4 count decreased to 22 and he needed to go for the second line treatment. Due to his deteriorated health condition, he was unable to work for over two months and needed urgent medical care. The team took proactive steps to raise money to ensure insurance to meet costs and ensured that their child was tested for HIV. At this point, the SSS team also explained to the couple about the benefits of insuring in PMJJBY and PMSBY schemes. They discovered that while he has a bank account, he does not have any money deposited in it. They decided to gather money from the community and got him insured him under the schemes of PMJJBY and PMSBY. Currently, the family is living happily with proper care and treatment and is confident about giving a bright future to their daughter who is not HIV positive
Peer Networks Serve as the Backbone of Community Support
The community is at the centre of the HIV response and intervention. For this, at the grassroots, a unique camaraderie exists within community members, which is capitalised on the ground to seamlessly connect members with services. Whether it is reporting and redressal of a violent incident or opening a bank account, or using government welfare services, the first point of contact is always another community member — an individual who has seen it all, and wants to reach out to others like her.
Since 2004, with the commencement of HIV/AIDS programmes, a cadre of women leaders have emerged as well. The objective of these programmes was to reduce the risk and vulnerability from HIV/AIDS infections, but in the process, it gave rise to a collective of sex workers who began questioning discriminatory legal and political frameworks. Since 2014, 2,130 women have assumed the role of women’s rights defenders within 71 community organisations in 47 districts spread across Maharashtra, Telangana, Andhra Pradesh, Tamil Nadu and Karnataka. These women are the basic structure of the community organisations and the primary advocates of human rights in the districts where they work. They are also usually the first responders to any instance of gender-based violence in their jurisdiction.
Sudha, a sex-worker who is HIV positive, was shunned by her in-laws. Living in Shahada Town with her son and daughter in law, she gave up sex work recently because of immense support from her peers at the community organisation. They regularly counselled her, provided her with nutrition and also supported her with financial planning. After struggling for years as a sex-worker and depending on others for financial resources, today, Sudha is no longer financially dependent. She has her own Kirana store.
Acceptance of diverse identities
In my opinion, what the HIV programme did was bring much-needed acceptance to a plethora of identities and sexual orientations and also offered space for movements and advocacy. For Malavika, a transgender, the programme gave her an identity. Her family disowned her, but the community and the community organisation embraced her with open arms, as did many stakeholders. She has advocated for the Transgender Bill, like many others in her community, and believes that this would not have been encouraged without the HIV programme in place.
Nayan who is gay, and secretly a part of a Jamat system in Theni, could come out to his parents when they were discussing HIV treatment. During the course of his life, Nayan has studied hotel management in the UK, where homosexuality is no longer looked down upon. He came back to India only when he realised that conditions for LGBTQI were becoming better. He participates in queer prides across India and hopes that one day, in his future, homosexuality and same-sex marriage in India will be legal.
I’ve been a part of the HIV programme for a little more than a year, and for a year, I’ve seen my life change little by little every day. In between field visits, the wait for HIV/AIDS Bill to get parliamentary approval and the faces of countless HIV-vulnerable community members, often my heart sinks: the United Nations and other international organisations, time and again, talk about eradicating the disease by 2030, but financial resources in the sector continue to dwindle. But in the middle of field visits, sometimes unnamed faces come to me and smile, and I retrieve my inspiration to work for them, with them.