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“I love bathing in the pond. My mother gives me a pot of water in which I draw shapes”

Meher Jan Choudhury (41) steps out of her house at 10 a.m., her heart in her mouth. She has locked up her daughter Suhana Begum (14) who has an Intellectual Disability (ID), and she is tension-free only when she returns at noon to give her a bath and feed her. “I feel guilty sometimes, but what else can I do?” says Meher. “My daughter is an adolescent and the world outside is becoming unsafe.”
 
Meher lives in Gora Gram, a village with a population of a few thousands, in Assam’s Cachar district. She is a domestic helper who works two houses – one in the morning and the other, post lunch, after which she is back home by around 4.30 p.m. She has tried taking Suhana with her to work but her employers object to her uncontrolled behaviour. If her son Saharul Alam (16) is around she has no worries, but he too goes out when he gets work on daily wages.
 
Meher has raised her two children singlehandedly for the past 14 years ever since her husband abandoned her when Suhana was just a month and a half old. In the past she attempted to supplement her monthly earnings – a maximum of ₹700 – through daily wage labour. But she found she would have to travel a long distance, which was impossible when already working two houses and taking care of her children. Saharul had to drop out of school after eighth grade because Meher couldn’t afford to educate him further. He learnt masonry skills from his maternal uncle and earns ₹250-300 on daily wages if he is lucky enough to find work, which could be once a month perhaps.
 
It was only at age three that Suhana’s disability came to light. Meher says a local doctor identified a “problem with the brain” that might have originated during pregnancy and would require long-term medication (she is prone to epileptic seizures). Meher didn’t have the money to buy these medicines for longer than seven months. She admitted Suhana in the village primary school but she faced bullying and physical abuse from the other pupils and the school advised her to bring her daughter once a week to mark attendance. Suhana struggled to focus and learn and somehow made it to sixth grade.
 
“Caregiving requires a lot of patience and persistence,” says Meher. “Everyone has dreams for their children. Some children are good in studies, some do well in sports. I know my child is not like them.” Suhana is excitable and often hits out at people, which is why neighborhood children and adults keep away from her. Saharul and Meher take turns to feed her. She speaks in single words or fragmented sentences, especially when prompted, but her speech isn’t clear. Meher tries to make her learn basic chores like washing clothes and dishes and mopping the floor.
 
Suhana looks forward to going to her uncle’s house nearby because “everyone there is fond of her”. She loves water bodies and takes delight in playing with water. Saharul sometimes takes her to the pond and Meher takes her there for a bath but “we have to be careful since she might get fits unexpectedly”. To keep her calm she gives her a big pot of water and makes shapes in it with her fingers, which Suhana imitates. She likes going out and is also calm when she enters a shop!
 
Saharul is the most supportive elder brother one could wish for. “I love her so much. When people call her ‘mad’ I feel so sad,” he says. He scolds children who try to irritate her. “I wish I could play games with her but she doesn’t show interest. I play music on my phone sometimes, to calm her down, but after 10 minutes she gets distracted and starts hitting me.”
 
Meher says she sometimes feels disheartened but she is always thinking about how she can gift her daughter a better future. She dreams of opening a shop of her own where Suhana can help her and engage in a meaningful activity. Saharul says, “My mother and my sister are the world for me. As I have witnessed my mother’s struggle from childhood I want to help her by securing a permanent job as soon as possible.” Does he not wish to study further? He sounds a bit crestfallen as he says, “If I get a chance I would be very happy to continue my studies. But now I don’t have my own dreams. All I want is to make my mother and sister happy.” He adds touchingly, “One day I want to celebrate my sister’s birthday and invite people and give them good food. Hope that day will come soon when I start earning a regular income.”