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“When I needed help, no one cared. When people became more understanding, I no longer needed their help”

It took many years before Santosh Kumari (40) from Rachhialu village in Himachal Pradesh could stand on her own two feet – literally. After an unspecified illness at age three left her with a severe locomotor disability, she says her parents Ram Ranu and Leela Devi neglected her. Since they were poor – Ram was an agricultural labourer and Leela took up whatever odd jobs she could find – they didn’t try to consult a doctor to find out what ailed Santosh, and focussed only on her older brothers Janam Singh and Karam Chand and her younger sister Vanda Devi.
Speaking to Santosh, who also has dwarfism, we detected her simmering bitterness towards her parents. She especially resents their not bothering to send her to school. While they went out to work and her siblings went to school, she was left to crawl about in their single-room hut, feeling trapped indoors. “It was my sister who taught me to read and write,” she says. Janam completed eighth standard and the other two, tenth standard. She was never taken along on family outings, despite her pleas and angry tears, because “I was a burden they would have to carry”.
Ram and Leela worked hard to build a new house – a larger structure with a garden and courtyard – a short distance from their hut. The family moved there when Santosh was 13. Janam encouraged her to use a crutch and slowly “this miracle happened”: she started assisting her mother with domestic tasks such as cooking and dishwashing, and was able to move beyond the confines of four walls. However, the outside world wasn’t so welcoming. She had no friends, and her short stature became the butt of snide remarks. “People would speak nicely to my face but laugh at me behind my back,” she recalls.
Leela used to earn petty amounts from neighbours by sewing garments from fabric that they had already cut to size. Once, she asked Santosh to go next door and collect cut material. The woman rudely told her, “Why don’t you cut the cloth yourself?” Whenever anyone addresses Santosh dismissively or challenges her, she grows more resolute. She went to a nearby tailor to learn stitching and became adept at the sewing machine in just a month and a half. “I began stitching for local families, but they never paid me, so I stopped,” she says. “Now I stitch clothes only for my family.”
According to Janam, “Santosh has an unbreakable will. If she sets her mind on doing something, she will make it happen.” She has a good relationship with her sisters-in-law. “They respect me,” she says. Janam is saddened by the fact that she doesn’t have a family of her own. She doesn’t plan to marry, either; her nephews and nieces are her surrogate children. Janam (49) has twin boys – graduates doing a computer course – and a daughter in her second year degree. Karam (44) has an eight-year-old son and a daughter in kindergarten. Janam’s 18-year-old daughter Anita says, ““I feel even closer to my aunt than my mother and am able to talk to her freely and ask her for anything.”
Santosh started her association with the Chinmaya Organisation for Rural Development (CORD) after one of their employees came across her in 2016. She attends their meetings and says she learnt a lot from them about disability and life skills. Of course, even before she encountered CORD she’s been earning her living, rearing goats and poultry. She has now become the primary breadwinner of the joint family! While Ram (70) is not working, Leela died of cancer five years ago, Vanda stays in her marital home, and Janam and Karam are daily-wage agricultural labourers who don’t have a steady income. Santosh sells eggs, chickens, and lambs. She currently has 25 hens and seven goats, and refuses to let anyone else tend to them. “We should ask only God for help, no one else,” she says. “And then we should put in hard work to reach our goals.”
Santosh believes that life has made her wise. “I take care of everyone but don’t expect anything in return. But I do urge all parents to take good care of their children, whatever their condition or disability, and give them as normal a life as possible.” Her main wish now is to see her beloved nephews and nieces well-established in life. Once that happens, she would like to travel to Mathura and Vrindavan.


Vicky Roy