People affected with HIV/AIDS have always been at the receiving end of discrimination in society. They have been ostracised as they have a certain stigma attached to them. But, they were not born with this stigma; it is society that has labelled them. But these patients have not let society dictate terms to them; one among them has risen up and began to work for the betterment of the people suffering from this disease.
Meet, Sushma Batkaldi, she is a 35-year-old woman, who hails from Kolhapur district in Maharashtra. A resident of Lakshmi Puri, she has proven that people with this condition can live a fulfilling life and can also do all the things that any non-HIV affected person can.
We salute her resilient spirit and never-say-die attitude, this very determination of hers, led her to NGO which works for HIV patients.
While speaking to My Medical Mantra, Sushma shared her journey, she said, “My husband used to fall sick quite often. So we decided to visit a doctor. Over there, my husband and I found out that he was suffering from HIV. I was shocked when we found this. As a precautionary measure, the doctor asked me to undergo an HIV test. When the results came in, I was diagnosed as HIV positive. For a second, I felt like the ground underneath my feet began to crumble.”
After this life was anything but easy for Sushma, as she began to experience discrimination on a first-hand basis. Narrating how everyday life was for her after she was diagnosed with HIV. Sushma said, “My in-laws began to treat my husband and me differently once they came to know that we were HIV positive. We were harassed to such an extent that we felt that we should leave our home. But, we did not.”
She added, “It was the same story at my mother’s house. Whenever I visited my own home, I felt stigmatised; I had no one to support me. No one in our locality would speak to us. At the time, even though we were poor we had to seek treatment at a private hospital.”
The hardships which were faced by her husband and her were many. She further explained, “Even though we both were diagnosed with HIV, we could just afford the treatment of one person. So I decided to let my husband take the tablets. When we had money we would take the medicines, when we did not have the money we couldn’t.”
She added, “My family members use to taunt me saying that you have HIV you are surely going to die.”
Difficult times did not seem to come to an end. In the year 2009, Sushma’s husband passed away. It appeared that her life had hit rock bottom. Although she was disheartened, she not let the harsh circumstances bring her down.
It dawned upon that she was not the only one who was facing discrimination. She realised that there are many people who are struggling with the condition. A few months after her husband died, she began taking steps towards working for the betterment of HIV patients.
This started to work for her in life and in 2012; she established her very own NGO called Janiv, which means consciousness.
Sushma stated, “Through this NGO we help HIV patients gain access to life-saving medications, it also provides guidelines over HIV treatment, they make people aware about the welfare schemes launched and implemented by the government for HIV patients.”
The NGO also helps children who are affected with HIV. People donate notebooks and other stationary material to the NGO which is then distributed to the kids. People can also volunteer at the NGO. At present, the NGO looks after women and children affected with HIV. They help provide ration cards to those who do not have them. They are also trying to set-up a housing facility for people who are at the end-stage of the diseases and have progressed into AIDS.
The NGO which was founded by Sushma, also holds awareness programmes in schools and colleges of Kolhapur. She ensures that children know the importance of equality. And that no child suffering from HIV is discriminated or treated differently.