The disease claiming lives and childhoods in India’s mining villages

RAJASTHAN, India — At 10, Ritu knew exactly what to get when her father got one of his coughing fits: water, medicines, nebulizer. If that didn’t work, she’d panic-dial her uncle next door, who would then hire a vehicle and rush his brother off to a hospital, around 60 kilometers away from their home in the northwestern Indian state of Rajasthan. Her father sometimes spends a week at the hospital. So Ritu stays home to send her younger brothers off to school, bathe the cows, fetch the grass, clean up the house, cook everyone’s meals, and tend to the corn, wheat, and taro that the family grows on a small patch of land. In between, she sneaks in an hour or two to study or rest. Her father, Nand Kishore Prajapat, has silicosis, a deadly lung disease caused by prolonged exposure to fine silica dust present in sand, rocks, and clay. He gets breathless even when he walks a few steps, as the disease has caused irreparable damage to his lungs. “It looks like there’s a hole in my lungs,” he said, talking about his X-ray and sonography reports stacked at his home. Silicosis is widespread among sandstone miners in India. Sandstone is a sedimentary rock used to make buildings and pave streets around the world: The Taj Mahal and White House are both made of sandstone. The silica dust emanating from these rocks during the mining process makes the workers sick as they mostly work without masks or any other safety equipment, often in unsafe working conditions, without formal contracts, and sometimes, prior knowledge of the work they are being hired for. Most workers Devex spoke to reported making 150 rupees (less than $2) a day. Thousands of people in Rajasthan have been diagnosed with silicosis, and millions across India have been exposed to silica dust. A huge chunk of the sandstone they mine lands up in other countries. In 2021, India exported more than 700,000 tons of sandstone, mainly to Europe and North America. In his younger years, when Nand Kishore would descend into the mines to manually extract the sandstone with a hammer and a chisel, he, like many other workers who come from migrant marginalized castes and communities, had no idea that the dust he was inhaling for hours at a stretch could potentially take his life. “I hadn’t even heard of silicosis back then,” he said. “None of us had.” His children are now paying the price. With her father largely confined to their home due to his condition and her mother, the prime breadwinner in the household, working as a laborer in stone quarries, Ritu has been forced to be a caregiver to her sick father and younger siblings. She can’t go to school anymore, as she can hardly take time off from domestic work. She can’t look at her father’s medical reports as it makes her anxious. When Devex described some common symptoms of anxiety to her — constant worrying, overthinking, and a feeling of panic — she said she has spent most of her childhood wrestling with these emotions. “I am always worried. I get petrified when he starts coughing. Who will provide for us when he dies?” she says, now 17, her eyes moist and voice cracking up. In many silicosis-hit households of India, children and teens — if they are not compelled to work alongside their parents to supplement the family’s income — have been forced to grow up early and burdened with full-time domestic and caregiving work. This has disproportionately affected girls. “Girls as young as 8 learn how to do all the household chores. They act as a mother to their younger siblings and a caregiver to their sick father, while looking after the whole house,” Sajjan Kunwar, a community health care worker in Rajasthan told Devex. “A child certainly can’t be happy in these circumstances. They are so stressed all the time.” In such a situation, children, especially girls, according to Kunwar, can hardly study beyond the age of 10-12. Dimple Yadav is an exception, however. The 16-year-old continues to go to school, even after her father’s silicosis diagnosis in 2015. However, she is unsure about how long she can continue her education, with all the domestic work she needs to do before and after school. “I don’t know what I want to do or be in the future. I think I will just do what my family says,” the teen said. While the disease has significantly altered the lives of girls, boys haven’t been spared either. At 7, Yuvraj is separated from his elder brother as his father Kishan Prajapat couldn’t afford to raise two sons after his diagnosis. “I had to send him off to a relative. It was so difficult,” Kishan said in a broken, feeble voice. In his brother’s absence, Yuvraj is now learning to care for his sick father, much like his cousin Rishi, 13, in a similar circumstance. The Rajasthan government, over the past few years, has introduced a couple of schemes and policies to support people with silicosis and their families: Under its Policy on Pneumoconiosis, the first of its kind in India, the government financially compensates people affected by silicosis with around 500,000 rupees. But workers say the policy has been riddled with major administrative failures and delays, depriving many of the critical funds. Under another scheme, the Palanhar Yojana, the government helps minor children of silicosis patients get their education by providing funds. This has brought some relief to the families but the workers and activists emphasize that the policy is too little and too late. “When a man dies of silicosis, his family usually faces three major challenges: food, education, and employment. We need to work on each segment so the widow doesn’t have to travel too far to find work,” said Rana Sengupta, the CEO of the Mine Labour Protection Campaign. He stresses we need more initiatives to provide more holistic support to the workers, such as locally creating sustainable job opportunities for women who often need to work at the same stone quarries that killed their husbands. Moreover, these policies have done nothing to prevent silicosis in the first place. This can be achieved by effectively implementing labor laws that could offer protection to the workers against unsafe conditions, legal experts said, but this hasn’t happened. “We cannot have any expectations that the governments will implement the law. But what explains why the judiciary cannot implement the law,” asks Colin Gonsalves, a senior advocate at the Supreme Court of India, pointing to the failure of local judges to stop the abuse. Over the past decade, many European countries have also acknowledged that the global sandstone trade is happening at the expense of local communities in faraway countries. So in 2015, the United Kingdom passed the Modern Slavery Act that obliged big companies to publish an annual statement on their efforts to make their supply chains more transparent. The European Union also drafted its Due Diligence Act to check human rights abuses but it is far from being implemented. Besides, “if the laws in India are not implemented, what are our chances to get some international laws implemented?” Gonsalves asked. Veteran social activist Nikhil Dey also suggests that India looks inward and assesses its own growth model, instead of expecting international organizations to act. “A bulk of what the workers produce is used to build affluent Indian houses. When we talk about the development growth model, [we need to understand] it’s coming at a huge cost of people’s lives,” he said. Many workers wish they could live longer to be with their children but seem to have given up hope. “If death is our destiny, so be it,” Nand Kishore said. Kishan nodded with a smile of resignation and excused himself from the conversation to catch a breath.