World AIDS Day: Meet the Haryana HIV warrior helping thousands of people fight their own battles

Surender Kaur was only 20 when she contracted HIV from her husband. That was in 1995. Surender, who married a truck driver in 1993, received the diagnosis at the Post-Graduate Institute of Medical Education & Research, (PGIMER), Chandigarh. She was told she had less than six months to live. After Surender’s husband’s passed away, her in-laws threw her out of her home. Now, after struggling for two decades, not only has she Surender come to terms with her disease and is living a normal life, but she has also been helping those diagnosed with the virus get their lives back on track.

Surender, 42, is employed as a field coordinator for the NGO Saathi, which advocates for those affected by HIV/AIDS. Surender spends her work hours pouring over the personal details of patients of government and private hospitals and reaching out to them — at their homes or over the phone — to help them come to terms with their disease and help them obtain medication made available by the Haryana AIDS Control Society (HACS). [caption id=“attachment_5650801” align=“alignleft” width=“380”]  In 2017, Surender Kaur was awarded a certificate of appreciation from the Haryana AIDS Control Society. Image courtesy: Sat Singh[/caption] “Through counselling, I’ve helped thousands of people,” said Surender. “People call from all over the country and even around the world. Often, they’re surprised to find that HIV patients can live for years and lead normal lives.” Her struggle Surender had just cleared her 10th standard exams when she was married off to a truck driver in Haryana’s Karnal district. Just seventeen months in to her marriage, she couldn’t possibly have foreseen the struggles that lay ahead. “My parents lived in Rajasthan’s Alwar district,” she remembered. “They were the only ones who accepted me after my in-laws kicked me out.” Surender did not have access to treatment. Nor was any affordable treatment available. Surender spent the next ten years without any medication. Worse, the people of her village treated her terribly, often cursing at her as she passed. “As no affordable treatment was available till 2006, sometimes villagers would kill their HIV positive daughters,” Surender said. “There were many horrific nights where I contemplated ending my life in a similar manner. But somehow, I survived.” Her rise After struggling for more than a decade, Surender contacted the Network for HIV Positive People, a Gurugram-based social organisation. “I was counseled by a man named Jagbir Singh. He told me about free HIV medication offered by HACS. Not only was I given treatment (after reaching Gurugram), I was also given a job through which I could help others.” Surender worked with the organisation — as a social activist— for four years. Her monthly salary (Rs 4,000) allowed her, for the first time, to stand on her own two feet and her job counselling HIV patients helped build her confidence. “I told patients  ‘I survived without medication for 10 years. Imagine what you can do with medication. You can lead a normal life.’ It worked like magic,” she beamed. In 2010, Surender was offered a job as a field controller — and a raise — by VIHAAN, an NGO working to rehabilitate those infected with HIV. She later moved to Saathi. For her tireless efforts, in 2017 Surender was awarded an appreciation certificate from Veena Singh, project director of Haryana AIDS Control Society. Battling stigma Surender said most HIV patients  — whether they belong to urban or rural areas — have one thing common: they have to battle the stigma associated with HIV. “Though the treatment at government and private hospitals is confidential, patients often face discrimination at the hands of their friends and families.” Patients are often given separate utensils in which to eat. They are barred from using toilets. Worse, they aren’t even allowed to sleep near their relatives. Most of the patients are women, Surender said. They face these insults on a daily basis, she added. “There are separate rules for men and women,” Surender added. “While women are mocked and berated, the men retain their status as long as they remain breadwinners.” Surender said she’s also faced discrimination while renting flats. “The first time I rented an apartment, I didn’t tell the landlord I was HIV positive. Not at first, anyway.” Surender said. “However, when I later disclosed my status, I was asked to vacate. Of course, I was never given a reason.” On the second occasion, the landlord learnt of her disease through a social outreach programme. “I haven’t revealed that I am HIV positive to my third landlord,” Surender said. “I find that as soon as I tell someone, they begin distancing themselves. It’s a lesson learnt the hard way.”