Tuberculosis and Taboos

In the north Indian state of Uttar Pradesh, the main highway threads along the fringes of the Ganges river, flooded with honking trucks decked in fluorescent flowers. Beyond this chaos though, there’s a quieter landscape that tourists, trade and government don’t reach. Here, life carries on in much the same way it has for hundreds of years. Money is earned from agriculture, spent on colourful weddings, and strict social customs dictate the type of life someone will be born into. In India, 70% of the population continue to live in rural areas and villages in Uttar Pradesh are home to many of the nation’s poorest.

It is here where I meet Kiran. Kiran is 23-years-old, but she carries the weight of many generations in the folds of her saree. When we meet, she is lying on a wooden bench under the burning monsoon sun. I smile, and she gazes back without emotion. Kiran has tuberculosis, a condition that is still common in this state despite the disease being preventable. She caught it from her brother-in-law, who also lives in the house that she shares with his wife, their children, her husband and his parents.

She has no children of her own, despite carrying two pregnancies into the final trimester. Stillbirth is common in communities where prenatal care is rarely accessed, and because it is still such a social taboo, women who experience it often suffer shame and grief without any support.

 
I am visiting with another woman from the village, Radhika. She is a health leader, trained in basic hygiene and nutrition information through Opportunity International Australia and its partner Healing Fields Foundation. Thanks to this role, she can reach out to women like Kiran who often fly beneath the radar of well-intentioned government health initiatives.

Kiran was seven-months pregnant when Radhika first approached her. Radhika’s training had taught her that tuberculosis was serious but treatable, and that Kiran and her baby’s life were at risk if she didn’t find medical help soon. Kiran reluctantly followed Radhika as the women sought help at nearby hospitals, but the doctors named prices that Kiran could not afford. Finally, Radhika found a doctor who agreed to help.

Kiran barely survived the birth, and her baby – weighing just three kilograms – didn’t make it. Uttar Pradesh has some of the highest levels of infant and maternal mortality in the country. Even if a baby survives birth – often without medical care – surviving past the age of five is another hurdle to cross. Malnutrition and preventable illnesses like diarrhoea are responsible for the deaths of thousands of infants in India each year.

Kiran barely speaks, even though we sit together for at least half an hour, fading under the hot sun into silence. Radhika says that the tuberculosis is in remission thanks to the prescribed medication she has been encouraging Kiran to take. But Kiran is still weak and susceptible to many other illnesses.

As we get up to leave, Kiran finally speaks. “Radhika saved my life,” she says. “Everyone else had given up hope on me. But she took me to hospital and looked after me.”

 
I’m moved by Kiran’s strength, and Radhika’s kindness. It is hard to imagine the kind of hardship Kiran faces – besides not having a toilet, not having clean water, not having even a fan in this 40-degree heat, she also has a preventable disease that she has contracted through no fault of her own. Radhika really did save her life, and all she did was demonstrate compassion and share radically simple information: find a doctor, take antibiotics.

Their experience is at once both empowering and devastating.

 
We leave Kiran’s house and go to Radhika’s home. She has lived in this village since marrying her husband 30 years ago. An alcoholic, he died three years earlier, and left Radhika to manage her family’s meagre income earned through their small farm.

Radhika’s daughter is 17 and in her final year of school – two years more education and two years older than Radhika was when she married her husband. Radhika wants her daughter and younger son to go to university because she can see how education might give them opportunities she never had.

The education Radhika received through her training as a health leader has been life changing for her as much as it helped women like Kiran. Since training, she’s built a toilet in her home, which has improved her family’s health and safety. She’s grown a kitchen garden, which has become an important source of nutritious vegetables and fruit for her family. She’s also built a soak pit, which ensures that water flows away from the house and onto the garden, reducing mosquitoes around their living area and the chance of catching diseases like Dengue or Malaria.

These are all simple changes, but in this part of the country, where Prime Minister Modi’s bold proclamations about building toilets and cleaning the Ganges fail to gain any momentum, Radhika is more than just a health leader. She is tackling centuries of social taboos, deeply entrenched beliefs about the role of women, and saving lives with her quiet blend of compassion and pragmatism.

This is how change happens. Between neighbours. Across generations. With kindness.

 
When social norms are pushed bit by bit, slowly but surely, until women like Kiran and Radhika can drink clean water and raise healthy children. Until they have the privilege to take all of this for granted. It all starts with the seemingly simple act of believing in one woman.

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