From HIV stigma to saving lives: Noori amma’s journey from agony to activism

CHENNAI: In 1954, a four-year-old boy, whose siblings had already passed away, lost his mother. Born in a remote village in Ramanathapuram, his father remarried a widow. Instead of receiving love and care, Noor Mohammad was physically abused by his father and stepmother. He was enrolled in school only at the age of 13. But due to his feminine body language, he was mocked by fellow students and beaten black and blue by his father due to societal pressure.

Unable to bear the pain, the gnawing hunger and coming to terms with her identity, Noor Mohammad, now Noori Saleem, fled to Chennai at the age of 15. “After coming here, I met another transwoman who provided shelter. However, over time, her true nature began to show. She pushed me into commercial sex work,” begins Noori.

Three years later, she learned that her family had come to Chennai and that her father was critically ill. When Noori went to perform the final rites, she discovered that her stepmother had arranged her marriage to a girl to receive a substantial dowry. Escaping the situation, she eloped to Mumbai with the help of Asha Amma and Pattamma, hoping to start a new life. But life had more hardships in store.

“During my time in Mumbai for about eight years, I did everything possible to survive, including begging, sleeping on roadside platforms and sex work. I fought all battles alone, believing in the survival of the fittest,” she shares. She eventually returned to Chennai in 1978, following her love. After arriving, she adopted three children and bought two houses for Rs 3,600.

In 1987, life took a grim turn when Noori voluntarily took an HIV test. “I saw a few awareness posters about AIDS and got scared, as I had also been involved in sex work. Dr Sunithi Solomon confirmed that I was the third HIV-positive person in India. It completely shattered me. I didn’t leave my house for a couple of days, clueless about what would happen next,” says the 75-year-old social activist.

Dr Usha Raghavan counselled Noori and helped her get involved in social work so she could support her children. Until 1993, she worked with Dr Usha, engaging in voluntary services. Later, Noori joined the Community Action Network and the Indian Positive Network, raising awareness about AIDS and supporting patients who were often treated as untouchables. She also educated many sex workers about safe sex practices.

With the help of Joseph Phillips, a friend and pillar of support whom Noori fondly refers to as Ennai Yetri Vaitha Yenniyin Sonthakkarar, she founded the South Indian Positive Network in 2001. “He motivated me to pursue basic education. I started the NGO with just two staff members. Now, we have more than 50 people working with us,” she adds.

To honour her friends Selvi Palani and Indra, who succumbed to AIDS, Noori also founded the SIP Memorial Trust, which aids HIV-affected individuals across Tamil Nadu and Andhra Pradesh.

Between 1994 and 2004, many lives were lost to this deadly disease and the stigma surrounding it. It was only after 2004 that people began to understand that HIV spreads through bodily fluids, most commonly through sexual contact, blood transfusions, or from mother to child during pregnancy, childbirth, or breastfeeding. Noori played a key role in securing free medication from Uganda, and her name is listed in the government gazette.

On the busy lanes of Chennai, Noori rescued a two-day-old newborn from a dustbin in 2005. Over the past two decades, she has rescued more than 300 children abandoned by their parents. “All my kids fondly call me Noori Amma,” she says with a heartfelt smile. She has now built a new child care home in Cholavaram, which will accommodate hundreds of children.

It wasn’t formal education but life itself that taught her the hardest lessons and shaped her into a better person. She is also the first transwoman in India to get a passport. Though society celebrates Noori for her tireless contributions, she has faced verbal abuse even from within her community.

“When I stood in front of the media in 1998, revealing my HIV-positive status due to sex work, many fellow transwomen turned against me, saying it hurt their business. But I won’t blame society or the government for the plight of transwomen. It is they who must take control of their lives and choose a better path. There are many initiatives in place to provide a secure life, yet some still opt for begging and sex work. Trans sex workers say Rs 15,000 is not enough to run a household. But how do women manage to run theirs with just Rs 7,000 or 8,000 a month?” questions the founder of SIP Memorial Trust, who feels deeply unsettled by the situation in her community.

Noori’s ultimate dream is to receive the Padma Shri, India’s fourth-highest civilian honour, in recognition of her work for society. “I longed for an education when I was struggling through life at a young age. I don’t want any other child to go through that. I hope to build a school at my childcare home for these children,” says Noori, who was awarded an honorary doctorate by the Puducherry government in 2021.