We will fight together, only then will TB and gender discrimination end!
When women suffering from TB held each other's hands, change began. Know in this inspiring story how women living in Delhi's slums are fighting against TB and gender inequality.
Change happens when gender inequality survivors join hands to stop TB
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| Change happens when gender inequality survivors join hands to stop TB |
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 bind 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 suffering borne
out of gender-based inequalities. Women could perhaps better understand
each other as we feel each other in ourselves.
TB and gender inequalities affect both the carer and the person being cared for
I am sharing one such powerful experience of that day when I 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 the 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 to end 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 threatened by demolishment. 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 breathing due to constant
coughing. She even had to leave her job as a housemaid 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 the government-run New Delhi Municipal Corporation (NDMC) Chest
Polyclinic (near Bangla Sahib Gurudwara), which 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. However, 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 at 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 the 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 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-day 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 their 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 faces,” 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 a fellow human being.”
Shobha Shukla
(Shobha Shukla is the award-winning founding Managing Editor and Executive Director of CNS (Citizen News Service) and is a feminist, health and development justice advocate. She is a former senior Physics faculty of the prestigious Loreto Convent College and current Coordinator of Asia Pacific Regional Media Alliance for Health and Development (APCAT Media) and Chairperson of Global AMR Media Alliance (GAMA - winner of 2024 AMR One Health Emerging Leaders and Outstanding Talents Award). She also coordinates SHE & Rights Media Initiative (Sexual Health with equity and Rights).
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