By Shobha Shukla
Before 2025 World TB Day I spent a day accompanying TB affected street activists (TASA) – women who help homeless women and female migrant workers in urban poor localities of India’s capital Delhi and help find more TB and link those in need to TB public services.
It was not just another day but an intense and unforgettable experience to bond with fellow women – all of whom were, and are, battling gender inequalities in their own lives – and surviving. Being homeless or migrant, these women are not only at a much higher risk of TB (the deadliest infectious disease globally) but also at a heightened risk of sufferings borne out of gender-based inequalities. We women could perhaps better understand each other as we feel each other in ourselves.
TB and gender inequalities affect both: Carer and the person being cared for
I am sharing one such powerful experience of that day when I had spent some time with a TB affected woman who was helping support other women through their TB treatment. This story is a powerful reminder of the importance of persistence, advocacy and life changing impact of community support and outreach to homeless women, empowering and fostering collective learning, and building their capacity with knowledge and understanding to not only act for ending TB in their communities but also stand up for their rights in society. Perhaps that is why a former USAID leader Samantha Power had said: “All advocacy is, at its core, an exercise in empathy.”
The power of collective support
Reena lives in an unauthorised slum in Delhi, which is under the threat of demolition. Her husband is a daily wage labourer. She has three children – 2 boys and a girl. In 2010, when Reena was 30 years old, she was diagnosed with TB. She began TB treatment but discontinued it midway due to neglect and lack of knowledge about the importance of completing the treatment. She stopped taking medicines once she started feeling better.
TB returns after 14 years
After 14 years, the disease resurfaced. In June 2024, Reena started feeling very weak- so much so that it was difficult for her to stand up, let alone walk. She also had difficulty in breathing due to constant coughing. She even had to leave her job of a house maid due to her persistent ill health.
At that critical juncture of her health, she was fortunate enough to meet Jyoti, a dedicated TASA (TB Affected Street Activist) working with Humana People to People India during a “Saheli Support Group” meeting in the slums, with whom she shared her situation. Saheli Support Group (Saheli is a Hindi language word for two or more female friends) brings a community of women together to support each other and help raise TB awareness.
Convinced that Reena’s symptoms were indicative of TB, Jyoti took her to government-run New Delhi Municipal Corporation (NDMC) Chest Polyclinic (near Bangla Sahib Gurudwara), who directed them to a close by government-run Lady Hardinge Medical College and Associated Hospitals for a TB test. Jyoti got Reena’s X-Ray done as well as sputum tested for TB. But the hospital staff said that TB was ruled out as the tests were negative. However, despite repeated requests, the doctor refused to give them the X-Ray and sputum test reports.
Unconvinced and deeply concerned about Reena’s persistent symptoms, Jyoti took her back to the NDMC Chest Polyclinic. On her request Reena’s chest X-Ray was taken and her sputum examination was done, and the results came positive for TB. Without any further delay, Reena was put on treatment. Jyoti helped Reena open and link her bank account with an Indian government scheme “Nikshay Poshan Yojna” under which INR 500 are transferred to a TB patient’s bank account every month for the duration of the treatment for nutritional support (this amount has been increased to INR 1000 since January 2025).
Since then, Jyoti has been following up regularly with Reena during the treatment, providing counselling support to her, as well as guiding her on hygiene and infection control. Reena’s health condition has improved since then. Her treatment, which began in August 2024, was to be completed in February 2025.
When I met her in early February 2025, I found Reena in a cheerful mood. Narrating her ordeal, she said she was feeling much better and had also started working part time (for 3 hours daily) in a shop. But there was still some weakness left in her body.
Reena told me that she has faced stigma and discrimination from her neighbours, who refused to speak with her or go near her, because of her TB. Even in the Saheli Support Group meetings, some women refused to sit near her. So, she stopped interacting with them. Her husband too would mistreat her. He would scold her as she was unable to do housework due to her illness. But his behaviour improved with time and now he has started supporting her.
Thanks to Jyoti’s unwavering determination, Reena has got a second chance of health and hope. Reena treats Jyoti like her daughter – even in front of the doctor.
“Nobody helped me, except for Jyoti and Sangeeta (another member of TASA network of Humana People to People India). I am truly indebted to them,” says Reena. And rightly so.
Empathy binds women to stop TB
It would be pertinent here to delve into Jyoti’s trials and tribulations too. Hers is a story of grit and determination. Despite all odds, Jyoti, daughter of a vegetable vendor, graduated (with History, Political Science and English) from the University of Delhi – School of Open Learning. She is also doing a computer course in the evening, alongside working with Humana People to People India.
One of the 7 siblings (5 girls and 2 boys) Jyoti has herself experienced the wrath of TB from close hands, when one of her sisters suffered from TB in 2019. Perhaps she got the infection from one of her classmates. There was a severe cough, fever, pain in the chest and difficulty in breathing. Her mother took her to a private doctor who diagnosed her with typhoid and anaemia. But her condition did not improve. On the advice of a neighbour, her mother took her to a TB hospital. There she was eventually diagnosed with TB and admitted in the hospital. But her condition had become very critical by then. She was discharged from the hospital, saying there was no hope to save her. But her mother did not give up. She took her to Holy Family Hospital (which is run by a private charitable trust in Delhi), where the sister was in the hospital for more than 1 year.
“We spent INR 1.5 lakh (about USD 1721) on her treatment with borrowed money. But we could save her life, and she was cured of TB.”
Never say die attitude
Jyoti has faced many challenges since a very young age, more so after her mother’s death. 3 years ago, in January 2022, when Jyoti was 18 years old and was studying in class 12, her mother died due to a road accident.
“When she was gone, our lives were broken. We are now slowly coming to terms with her loss. Right after completing my class 12, I started working in a call centre as our financial condition was not good. My father had said that if I wanted to study, I would have to bear the expenses myself. But come what may, I was determined to fulfil my mother’s dream of becoming a teacher. Currently I am the sole breadwinner of the family,” Jyoti shared with me.
Finding light in helping others
Jyoti started working for Humana People to People India as a TASA (TB Affected Street Activist) in August 2024. “We TASAs do survey work in our allotted areas, looking for homeless people with TB symptoms and also asking the people about their needs. We hold health camps to mobilise the homeless persons of our area. In these health camps, doctors do free health checkups and provide free medicines. We also help people navigate the hospital system (and other government systems). We help them get their identity cards and other documents made, without which they cannot avail the existing government facilities. We encourage them to gather courage and power and get better to take charge of their own lives. And they always feel very indebted to Humana People to People India for this humanitarian work.”
Saheli Support Group meetings
Jyoti shared that, “Weekly Saheli Support Group meetings are organized. In these meetings we not only educate the women on recognising TB symptoms, but also on other health issues and seasonal diseases like dengue, etc. We try to empower the women so that even when we are not there, they can take care of (and help) themselves and others. Those with more than 2 weeks of cough are advised to get an X-Ray done. Sometimes we manage to get the free X-Ray done close to where they live, under the 100 days campaign of TB free India. Humana People to People India also supports them to cover X-Ray costs where needed. The night shelter women often ask for help in getting a job, as they face discrimination. Many women who work as day labourers complain of unequal wages. They are paid less as compared to male counterparts doing the same work. They often encourage each other to stand up for their rights against this discrimination and complain to the Workers’ Union.”
“These meetings have yielded good results by way of general empowerment and knowledge sharing among the homeless and migrant women. They are now capable of getting birth certificates, Aadhar unique identification cards, etc, made themselves without any help,” she added.
“I get a lot of gratification by deploying my skills as a social worker with Humana People to People India and have learnt a lot. There is no better satisfaction than serving and helping hapless, homeless women and trying to bring a smile to their face,” said Jyoti.
Jyoti’s message to all women is: “One must be educated, but we must respect even those who are not educated. One should not look down upon the poor. Every life matters, every life is important. We must strive to protect every life as fellow human beings.”
(The writer is an award-winning founding Managing Editor and Executive Director of Citizen News Service)
