I had read and researched the background of the news subject I had to interview. Married off at the age of 12, tested positive for HIV at 15, got riddled with AIDS, lost a child who was barely 14 years old, and saw the death of her husband shortly after. If even one of the aforementioned situations of peril would have happened to me, I would have been shattered; broken to my core. Dialing her number, I expected the same sentiment to be echoed by my news subject when she picked up on the other end.
She picked up all right! But, the voice on the other end never represented frailty. It did not show an outpouring, as usually expected from someone in her state, pity. It was of strength. It dripped with aspirations; aspirations to not let her life go in vain. That was my first interaction with Akanksha (name changed not because the news subject was ashamed of her identity and condition, but wanted to save her loved ones from social subjugation).
Akanksha Singh (name changed) grew up in a village near Nasirabad, Ajmer district. A father who worked as a driver, and a mother who handled their small land holding, life never came easy to Akanksha and her family. But, the proverbial kick in the shin came when Akanksha’s father unexpectedly passed away. Akanksha was 12 then.
Her father’s death broke their financial backbone. To compensate and add to the family income, Akanksha had to drop out of school, barely finishing her 6th grade. “I started working as a manual laborer, somedays on agricultural fields, and somedays on construction sites. The work hardly paid me Rupees 30 (approximately 50 cents) a day. I longed for school, but I had to work.”, remembers Akanksha, with a slight hiccup and the only time when I felt a slight hint of mournful longing in her voice in the whole conversation.
As was rampant with the cultural traditions in rural Rajashthan, and arguably other parts of India, Akanksha was married off at the age of 13, to a man who was at the very least 10 years older than her. By the age of 14, Akanksha had given birth to a child. But, the child only survived the first 14 days of his life.
Akanksha never even got an opportunity to recuperate and fight off her grief, when her husband was out found to be HIV+. Akanksha must be touching 15 then and it was the first time she had heard the words HIV and AIDS. “I had never even heard of the disease. I just felt that he might be down with the flu. But, this was not the only shock that was in stock for me.”, recalls Akanksha.
The Nasirabad region in Rajasthan is infamous for its high numbers of HIV+ patients. When the results of Akanksha’s husband came, the local hospital also coaxed her to take the test. She was tested positive for HIV.
Her in-laws were not ready to accept her condition, blaming it on the inefficiency of western medicine. But, a test at a larger, specialized hospital bore the same result. That’s when the crumbling life of Akanksha, turned into dust.
Her husband passed away 3 years later when she was 18. With no child and the infection of AIDS, she branded as a pariah at her in-laws. Unable to cope with the dejection, Akanksha came back to her village with little hope of any restoration in her life.
“Back in my village, I was constantly searching for work. That is when I came across this NGO that was on spreading awareness about HIV and AIDS in rural Rajasthan. Although, my illeteracy was a barrier, my passion to talk openly about the issue to women like me, helped in starting work with them. I began my work in HIV awareness as a volunteer at the Government Hospital in Nasirabad where I counseled men, women, and children on their HIV status.”, recalls Akanksha.
In 2006, Akanksha was introduced to the PWN where she began to collectivize PLHIV (People Living with HIV), training health service providers and enabling stigma-free welfare services for all members of the collective. Since 2006, Saksham has linked 3,100 women, 1,500 men and 1,411 children to the government ART center across Nasirabad and Ajmer.
Every month a pool of 30 volunteers and one full-time staff member conduct six one-hour-long sessions with 20 to 60 women who require referrals to ART and nutrition services. Currently, 85 women access nutritional support directly from the Saksham office in Ajmer every month. Saksham volunteers also sensitise government healthcare service providers.
In addition to those living with HIV, Akanksha’s work also includes those who may be affected by the HIV diagnosis of a loved one. Saksham has provided livelihood assistance to 20 to 25 women through training in agarbhatti making, approximately 15 to 20 women are now active members of the district-level positive networks and some work as typists, Anganwadi workers and one has a NGO of their own.
With their outreach programs, Akanksha and her colleagues have reached out to almost 6000, and have supported them in getting the right information about future treatment.
“For women, even men, out here, discrimination is rampant. Being tested positive for HIV brands you a social pariah, bereft of any consolation or love. Those are the individuals that we intently want to work. When I talk about my story, the survivors see me, they get hope. A hope that not everything is lost. Our life span can be dictated by our diseases, but our life will not be.”, says Akanksha, with the stern resolution and her infectious energy palpable.
Currently, Saksham runs on bare minimum funds. Akanksha works as an Angandwadi worker to support the operational budgets of Saksham. “We are in need of money. But, even if anyone could help us voluntarily in tidying our research methods and impart compilations, that too would be off immense help”, she says.
As the interview came closer to its conclusion, a thought persistently lingered on my mind. I had heard her story, understood her condition, emphasised with her loss, and witnessed her resurgence. But, I still couldn’t fathom how could someone, with a fatal disease like AIDS, would be so persistent and unabashedly hopeful. Akanskha gave me a simple answer. “If there is life, there would be problems. But, the key is not let them weigh on you and move around as if you don’t have it. My problem is AIDS, for someone else it can be the loss of work. Whatever may it be, the key is to move forward, believing that there are no distinct obstructions on the road, the obstructions are the road.”, she concluded with the same infectious energy that I come to adore and respect in the last hour; bereft of self pity or consolation. Only full of warmth, will, and a persistence to not give up.
Akanksha was selected as a finalist of the CII Foundation’s Women Exemplar Program, supported by Due Diligence Partner Start Up – India. You too can nominate a women grassroots leader for 2019 – http://bit.ly/womenexemplar
CII Foundation’s Woman Exemplar Program recognizes exemplary grassroots women change agents who are working to transform excluded and disadvantaged communities of India in the fields of education, health and micro-enterprise in India. Every year 15 finalists are chosen, and 3 are declared winners, with prizes of Rupees 3 Lakhs to the winners and access to a six-month mentoring and leadership process to all finalists. Click Here to know more.
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