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“I am thankful for what I have but I wonder who will care for me if my condition worsens”

When we asked Patey Yaro (36) from Arunachal Pradesh to tell us about her circumstances and how she acquired her disability, muscular dystrophy (MD), she replied, “I don’t remember much about my past. It is too painful to think about it.” We did gather that her father, who had two wives, died when she was five years old and her mother died when she was 12 (“she fell ill and couldn’t afford treatment”). Apparently her mother and stepmother both had several children, many of whom died.
 
It was the All Arunachal Pradesh Divyangjan Youth Association that directed photographer Vicky Roy towards Patey and other disabled persons in that state (which incidentally has the worst track record for implementing government schemes for the disabled). A note of bitterness creeps into Patey’s voice when she refers to her large family. Her disability became evident at an early age and she was neglected. “They would put me on a charpoy and leave me there all day,” she says. She has not maintained contact with her stepbrothers and stepsisters. “I have more siblings than I can count but nobody comes to ask about me,” she says. “If they don’t care for me, why should I be in touch with them?”
 
Patey says it was an uncle who took her for a medical checkup when she was nine and the doctors said she would not be able to walk or talk. She wasn’t clear when exactly she was diagnosed with MD. Her ill health prevented her from attending school but both her sisters, one older and one younger, have had a formal education. She says she would have liked to get married like her sisters but she fears that a prospective husband might abandon her because of her infirmity.
 
Once, Patey heard passers-by singing praises to Jesus Christ. They sang that “He loves everyone, whether they are blind, deaf or lame or have leprosy”. She decided to go to church and beg for her voice and mobility to be restored. She believes that a few years after she started praying to Christ she regained her speech and her mobility. This is why she embraced Christianity although she was born in a Hindu family.
 
Patey said to herself: “Nobody is going to feed or care for me indefinitely, therefore I need to work to earn my living.” As a domestic worker she cleaned and cooked in people’s homes. At 19 she moved permanently to her elder sister Kripa’s house. There she began selling vegetables, praying that buyers would not openly show their revulsion towards her ‘deformity’. She is embarrassed about her body, which is why she hides her left hand (her left hand and left leg have been impacted). She was advised to try growing vegetables in order to earn more money but she claims she is not strong enough to do so.
 
With her own savings and some assistance from Kripa, she started her own small grocery store on the premises of their house. She opens her shop between 6 a.m. and 7 a.m. and shuts it at 9 p.m. She would like to have new clothes but is content with wearing Kripa’s hand-me-downs. Although her sister’s family takes good care of her, she does feel obligated to them. Her desire is to have her own land and house so she can be independent and lead her life on her own terms. She would welcome any form of government assistance, she says.
 
MD is a progressive disease. “I owe my life to my sister but she cannot look after me indefinitely,” says Patey. “What if my condition gets worse?” However her final words are: “God has been kind to me and has shown mercy. Therefore I should also be kind to others.”