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Bundi, Rajasthan, India – At first glance, Radha Bai and Hira Bai do not appear to be crusaders. On a September afternoon, the two frail and elderly women, their heads veiled by the loose ends of their brightly coloured saris, could be heard raising loud slogans outside the administrative offices of the district of Bundi, in the western Indian state of Rajasthan.
They were demanding their rights to compensation, leading a group of 80 widows whose husbands worked in mines and had succumbed to what the locals call the “curse” of this region – the fatal respiratory disease, silicosis.
One of the oldest occupational diseases in the world that kills thousands of people every year, silicosis is an incurable lung disease caused by inhalation of silica dust found in rock, sand, quartz and other building materials.
According to a report by an academic research collaboration, nearly 800,000 workers could be affected by silicosis in the state of Rajasthan alone. No official data is available.
Radha and Hira are from Budhpura, a “village of widows” in Bundi, situated in the middle of huge sandstone mines. The district of Bundi and the neighbouring districts of Bhilwara and Kota are hubs for sandstone export to Europe.
Radha counts on her fingers the number of people in her family afflicted by silicosis. Her husband, his two brothers, her oldest daughter, all of them have died. She says she might be the next victim of silicosis.
“This is how we all die here. The moment there is blood in our cough, we know death has come for us,” she said.
The environmental devastation in and around Budhpura is visible. The rough track that leads to the village is on a craggy landscape of grey-brown rock dotted with hills of piled up rubble from mines. For the roughly 5,000 people in the village, the surrounding sandstone mines offer the only means of livelihood.
After Radha was diagnosed with silicosis, the doctors advised her to stop working on stone, to stay away from the dust, but she had no choice. She has to raise her three younger daughters and the three children of her oldest daughter Mamta, who died five years ago from tuberculosis. She was 32.
Mamta had never worked in the quarries, but the air in Budhpura is laden with the dust that not only affects those who work in mines, but also those who live near them.
Mamta was misdiagnosed with tuberculosis, but it was silicosis that killed her, says Radha.
Disease has left Radha weak and chronically ill. She looks older than her age.
“I feel like I am only half alive. I know there is no cure for me. But I want to live longer, to settle my children,” the 55-year-old says.
Hira, who is 58, lost her husband to silicosis two years ago. He was 68. “First came the cough, after which he was treated for tuberculosis. He would work all day and drink through the evening. He did not survive long.”
She is a midwife in the village, work for which she is not paid anything. She has been forced to chisel cobblestones, as do her two sons, earning a rupee (1.5 cents) for each piece.
Carving a piece of cobblestone to a size of roughly six inches square takes around five minutes, but it is a strenuous task carried out by bare hands, with little attention to safety and health concerns.
Rules regarding workers’ rights are often flouted, and laws are hardly enforced, as powerful mining mafia wield influence over authorities.
The more they work, the more they earn, with younger and stronger people producing more than 100 pieces in a day.
“I can’t protect my sons from this job. What else can we do?” Hira said.
Al Jazeera tried to reach out to authorities, but they refused to comment.
Since her husband passed away, she has been running from pillar to post to receive 300,000 rupees (approximately $4,595) as next of kin compensation from the state government.
“Rajasthan is amongst the worst affected by silicosis in India,” says MK Devarajan, former member of Rajasthan State Human Rights Commission, who helped formulate the state policy on silicosis.
“We’ve not even seen the tip of the iceberg. The problem in Rajasthan and the rest of the country is much worse than we imagine.
“But, it is poor people who are affected by it, and no one is there to plead for them,” he says.
The state has a monetary relief mechanism for certified silicosis patients since 2013, but critics point out flaws in the process.
The Rajasthan government provides Rs 100,000 ($1,545) as compensation to people diagnosed with silicosis by government-appointed doctors. When such “certified” patients die, their families receive Rs 300,000 ($4,636).
But it is a long process filled with arduous paperwork, a daunting task for most workers and their families as there are no formal contracts of employment and the industry is largely unregulated.
The average income of people working in mines is about Rs 350 a day (nearly $5.4), which is the same as the minimum daily wage for unskilled non-agricultural workers. Those working in dumpyards outside their homes, including the widows, earn less than $3 a day.
“I must have made eight visits in the last two months to the administrative office, every time I had to go back to file new paperwork,” said Hira. “I am illiterate and nearly ready to give up,” her eyes filled with tears.
“The average age at which mine workers are diagnosed with silicosis is anywhere between 35 to 45 years,” according to Dr Anil Saxena, professor of respiratory medicine and chairman of the silicosis board at Kota Medical College in Rajasthan.
“The social complications that arise from it are often worse than the disease itself. We find that communities are indentured to the work,” he says.
Widows in the age group of 18 to 60 are entitled to a pension of 500 rupees (a little more than $7) a month.
Chanda Yadav from Budhpura, along with other widows, has been petitioning for the widow pension to be increased.
“The younger widows with young families to support need more money,” said 52-year-old Chanda whose husband died 15 years ago of respiratory problems.
“A widow supporting a family of four would need close to Rs 10,000 a month ($155) to survive. The pension is not even a pittance.”
There are nearly 180 widows in the village of Budhpura, and about 80 cases of silicosis have been detected in the village since 2014, according to the Mine Labour Protection Campaign (MLPC), an NGO that works for the rights of mine workers in Rajasthan.
Every other family in Budhpura has a similar story to tell. Death comes early, and more men than women die of silicosis because of greater exposure. When the early symptoms set in, the cough, shortness of breath, constant fatigue, they are usually misdiagnosed and treated for tuberculosis.
A village of widows is common parlance in the state of Rajasthan. In district after district, such villages are to be found, with abysmal work conditions, no alternative means of employment.
Rajasthan has the highest reserves of natural stones, including marble and granite, in India. It produces more than 80 percent of India’s sandstone.
According to most estimates, there are 2.5 million mine workers in Rajasthan, and a large number are at risk of silicosis.
The number of silicosis certified patients in Rajasthan – those that have been paid compensation by the government – has been rising every year, with 2,201 cases in 2015, 5,058 in 2016, and 1,182 for 2017, up to the month of April (the latest figure available). But the actual numbers are higher, according to advocacy groups.
Rana Sengupta, managing trustee of MLPC, says that awareness about silicosis has gone up in recent years, but more needs to be done.
“The tragedy of silicosis is that it is a preventable disease, through wet drilling and proper protective gear,” Sengupta told Al Jazeera.
“Mine owners in India get away without paying compensation to workers or fail to improve working conditions. They will spend millions to buy new machinery, but human life is cheap,” he says.
Mine owners, on the other hand, shift the blame to the workers themselves. Chote Khan, a sandstone mine owner in Bhilwara, says, “We give the workers masks and helmets, but they are irresponsible about their own safety.”
Early in October, Hira Bai’s compensation finally came through, but it was already delayed by nearly two years. She plans to use it judiciously, so her family can be secure. “The men here die. It’s left to us women, hidden as we are behind our veils to do everything,” she said.
(With additional reporting by Petra Sorge and Julia Wadhawan. The reporting has been supported by the European Journalism Centre and funded by the Bill & Melinda Gates Foundation)