Voices

Hopes and fears: The parenting journey of a couple with disabilities in Sangli

Description: A young child sits between two adults, one wearing a salwar kameez and the other a red kurta. They look down at the child, smiling. The three sit on the floor of a home, with an open book beside them. There is a potted plant in the background, two paintings on the wall, and a window on the right, with a bird perched against the sill.

Nilofer and Sharif have the same aspirations for Aaliya that many Indian parents do for their children. They want her to go to a good school, study to become a doctor and become a person the community looks up to.

Nilofer was nervous when she found out she was pregnant again. Her first pregnancy was complicated, and ended in a miscarriage. There was some confusion as she tried to explain the troubles she had the first time around. She was not sure what the problem was, but it ended in an enforced delivery to a stillborn baby. She was very upset, and the recovery from the miscarriage was hard on her.

After several attempts, the second time around, she had a healthy pregnancy.

Nilofer and her husband Sharif are a hearing and speech impaired couple who live in Sangli, Maharashtra. They have a four-year-old daughter named Aaliya, who will soon be enrolled in a nearby English-medium school. Nilofer said that while she was pregnant, she had wished for a non-disabled child. ‘I wanted more for the child than I had,’ she explains, thinking back to all the struggles and discrimination she had to face as a child with a disability.

‘Sharif works as an artist and a painter to make money. We want to ensure our child gets the best,’ adds Nilofer.

As she looks back at the early days after her delivery, Nilofer talks about how her proximity to her own mother helped her immensely. ‘When I lived with my mother right after delivery, she would sleep in the same room as me. She would nudge me awake when the baby woke up in the night crying. I would then respond to the baby’s needs,’ she adds. She also says that when she moved back in with Sharif after a few months, Sharif’s parents came to live with the couple temporarily.

‘It was not discussed but they knew I needed help in looking after the baby. I could only respond to her needs if I never took my eyes off her. But since I also needed to cook and clean, this was impossible. Those months we would all sleep together in the living room. His mother would wake me up every time the baby cried or seemed upset,’ Nilofer says.

The pregnancy was filled with anxiety and both she and Sharif were worried about their baby. So when Nilofer found out that her child was not disabled, she felt relieved.

Parenting Aaliya has also had its own difficulties, an experience that is not unique to Nilofer. Many women with disabilities have written about their experiences of parenting, like this visually impaired mother who talked about the difficulties she faced when her baby began to crawl. However, as she points out in her piece, everyone — including non-disabled mothers — needs support when it comes to bringing up their children.

A photograph of Sharif and Nilofer, sitting crosslegged on the floor of their home, looking directly at the camera with smiles on their faces. Their daughter, a young child, sits between them.

Sharif and Nilofer with their daughter

After a hard first few months, Nilofer and Sharif found that things changed as Aaliya started to grow up. Aaliya and Nilofer learned how to communicate with each other, a skill that was especially important for when they were home alone together.

‘When the doorbell would ring while I was in the kitchen, Aaliya would come to me and drag me to the door. She would wait by my side and help me communicate with the person on the other side,’ says Nilofer.

Over a period of time, Aaliya learned to sign to her parents. To her, it was like learning a new language. Sharif says, ‘She communicates with us in sign language and talks to my parents and our neighbours in Marathi. In the night, when she is thirsty, she nudges me awake and signs for a glass of water.’

Technology has facilitated and, to some extent, shaped this communication between Aaliya and her parents. Since the child did not know how to speak English, and Sharif wanted her to know a little bit before she started school, he reached out to his hearing and speech impaired friends and asked them for recommendations for mobile applications he could use with her. ‘I downloaded a few apps on my phone, and I use them to teach her shapes, sounds, and even the alphabet. This has helped her learn how to say her ABC’s before she begins school,’ he says. Both Nilofer and Sharif use the phone to play with and engage Aaliya for a few hours every day.

Aaliya is enthusiastic in her use of these applications. She uses them both to learn and to play.

Nilofer and Sharif have the same aspirations for Aaliya that many Indian parents do for their children. They want her to go to a good school, study to become a doctor and become a person the community looks up to. But their dreams are not without some fears.

Though both Nilofer and Sharif feel accepted by the community and the schools in the area, especially since Sharif has done artwork on many of the school walls, they wonder if she will fit in when she goes to school and worry about whether they will be able to effectively communicate with her teachers. In other words, they are navigating both their hopes and fears for their child — like any other parents.

(For more about Nilofer and Sharif, read Srinidhi’s previous Skin Stories report from Sangli.)

Srinidhi Raghavan is a feminist who works on women’s and child rights. She is an introvert, a lover of poetry and sometimes, a writer.

 

Featured image credit: Upasana Agarwal

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