‘I fall, but I am able to stand up’

Vivek and his friends – aged five to twelve – play their everyday games a little differently. For instance, they play ‘police chor’ (cops and robbers) on paper instead of running behind each other; ‘hide and seek’ is played with a handkerchief, sitting down. They also play langdi taang (a playground game that is similar to Tag) that calls for hopping on one leg, where Vivek participates with a little help from his friends.

The games have been altered a bit to accommodate Vivek.

Vivek has a condition whose medical term in Latin is genu valgum, commonly known as knock-knees – a disability of movement. When he stands, his knees come together, his feet spread apart and away from each other. Standing up, balancing as well as walking are not easy for him.

“Uske pairo mein gap hai. Joker ki tarah chalta hai voh [there is a gap in his feet. He walks like a clown],” says Vivek’s mother, Geeta Devi, speaking matter-of-factly about her son’s condition and adding, “He cannot maintain his balance and slips frequently when he is coming down the stairs. He can’t walk fast and tires easily.” In her late 20s, Geeta is a domestic worker in Sarita Vihar, a housing colony in south-east Delhi.

Vivek describes his condition saying, “My knees come together, others’ knees don’t. God has given me my own style [of walking].” Referring to his frequent falls he adds, “I fall, but I am able to stand up too.”

One in every 100 children in the age group 0-6 years has some sort of disability. Further, according to Census 2011 there are over 26.8 million persons with disabilities in India – over 14.9 million males and 11.8 million females. Among males, 22 per cent have a disability in movement like Vivek. 

When Vivek was a little over a year old – the time when most infants begin trying to walk – Geeta realised that his legs were shaped differently. “I thought he was not able to walk [like other children] because he was heavier than children his age,” she says. As he grew older, he continued to be unable to walk comfortably. In early 2019, she got in touch with a doctor in her hometown, Dahod in Gujarat who told her to contact a doctor at a Delhi childrens’ hospital – Chacha Nehru Bal Chikitsalaya. Just as Geeta and her family were putting together the resources to take Vivek to Delhi, the pandemic struck. The consequent lockdowns made any immediate visit unviable.

“The doctors at the hospital said a cure was possible before he turned eight, but we couldn’t visit at that time,” says Geeta. More than a year would pass before Vivek met the doctor as the family struggled to find the money and time. “They ask us to bring Covid test reports and then public hospitals have very long lines…so it’s quite a hassle. And after doing all that there is still no guarantee [that anything positive will come of the trip].”

“Aise dekhte dekhte, ilaj ho nahi paaya [waiting and waiting, finally we have missed out on getting him a cure],” she adds.

Vivek’s father, Dharvendra (he uses only this name) and Geeta came to live in Delhi from Dahod when Vivek was around two years old (2015). Earlier Dharvendra tried many ventures, including selling samosas, jalebis and vegetables. Now, he works as a security guard at a big electronics company located at the Delhi-Badarpur border. He usually works the shift from 3 p.m. to 10 p.m. “My husband chooses this shift because we try to never leave him [Vivek] alone. If my husband is not home, then the neighbours take care,” says Geeta. 

For as long as they have been in the city, Geeta has been a domestic worker. Together, they earn around Rs. 20,000 a month and are able to save Rs. 4,000 to 5,000 after paying Rs. 5,000 for the single-room house they rent in Madanpur Khadar, close to the Delhi-Haryana border. “Thankfully we do not have any loans and don’t have that added worry,” she says.

Vivek used to attend an English-medium school in Madanpur Khadar for three years, travelling in a cycle rickshaw that Geeta had arranged for him. His cousins, the daughters of his father’s brother are studying in Class 7 and 9 in the same school, would hold him by his arms, put him between them and carefully take him along. “He gets very nervous when crossing busy roads and is afraid that he will fall,” says his mother.

When the lockdown started, Geeta and her husband’s jobs became uncertain and their incomes fell. The school fees of Rs. 12,000 for six months could not be paid and Vivek was taken out of school and enrolled in a government school — Sarvodaya Kanya Vidyalaya in Sarita Vihar.

Now in Class 3, Vivek attends online classes on his mother’s smartphone. Geeta has requested his teacher give him special attention and be extra careful about what he does. “[His teacher] takes very good care of him,” says Geeta. She is waiting for the Covid situation to improve to apply for a Unique Disability ID (UDID) card, issued to differently-abled persons by the union ministry of social justice and empowerment. Having a UDID would allow Vivek to avail government benefits. The UDID is a single document for identification to avail benefits.

Sometimes when Vivek is playing with his friends, crossing the road or doing something that requires him to move quickly, he hesitates. “Darr jaata hai ki me itni tez nahi chal paunga [I get scared that I will not be able to walk quickly enough],” he says.

Integrating into the social world of children’s play was initially hard. Geeta shares, “The other children would complain to me that ‘he is falling too much’. I would tell them, ‘either don’t make him play, but if you do, then take care of him’.” Her attitude eased the awkwardness, and she says, “Now everyone in the building and around us is aware of his condition and have stopped commenting about it.”

Adults in the family have not been as supportive. “The older members in our family continue to be insensitive and ask why Vivek’s legs are crooked and why we [his parents] have not done anything about it. I don’t mind if they say these things to me or my husband. But when they say these things to him, I worry he will get depressed,” she says. 

”Joker aaya hai!”

When Vivek hears this – ‘the joker has arrived’ – he often gets angry, cranky and confused. He asks his mother why people make fun of him, “Ye aise kyun karte hain? Why do they say this?” Despite the occasional jokes at his expense, he likes to play with his friends who convene regularly on their building’s terrace. Geeta says she is afraid of the time when he grows older and stops sharing his feelings.

Vivek’s younger sister, Jahanvi has the same condition of knock-knees but she was diagnosed earlier – at two years of age – and her treatment began sooner. Jahanvi received a course of Vitamin D3 injections to help absorption of calcium by the body. This treatment is said to be used to strengthen bones and by resolving calcium deficiency, it could help cure the condition of knock-knees.

Geeta bought the injections from a medical store and had them administered at a public hospital. “We were able to give her the required medicines and injections for two months; they helped. Her feet, which were facing in opposite directions, slowly straightened. We also made her wear special shoes. Overall, her condition is much better than Vivek’s,” says Geeta, adding that she still worries if, as Jahanvi gets older, it will revert to knock-knees.

Covid put a stop to Jahanvi’s injections as public hospitals were inundated with cases. Geeta, on the advice of her doctors, switched to a Vitamin D3 syrup instead. Jahanvi will also get special orthopedic shoes that are expected to help treat the condition.

The family fears that things may get worse for Vivek. “The gap is slowly increasing, and as he grows older, the gap between his feet will become more noticeable. He will find it difficult to balance and walk,” says Geeta. “We have thought that he can study for as long as he wants, and after that we could set up a small shop for him where he will not need to walk, maybe an ice-cream shop,” she says hopefully.

PARI Education encourages students to write on marginalised groups. This series on people with disabilities is supported by Tathapi Trust, Pune.
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