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“Nothing can stop me from watching my favourite serial! I like to dance and play the dholak”

On a regular day, Anjali Kumari is up at 7.30 a.m. and then she is in charge of breakfast. She serves everyone and is last one to eat. She and her youngest sister, Kavita, like all siblings, have the usual quarrels over chores. “It’s your turn to do this.” “No, it’s yours!” Although the oldest has special needs she is treated no differently from her three younger sisters.
 
When Anjali was born, her parents, Hari Swaroop and Meena Kumari, were not too concerned about her developmental delays. The couple, from Kangra in Himachal Pradesh, were kept busy as three other girls followed. Meena Kumari, a homemaker, says her oldest child started crawling only at five and hardly ever spoke; and when she did, there was no clarity. In fact, she and Hari Swaroop, a state transport bus driver, now retired, did not seek any medical help for their firstborn.
 
Anjali’s life changed when another mother from the neighbourhood told her parents about the Chinmaya Organisation for Rural Development, popularly known as Tapovan. Here, for the first time in her life, she received medical treatment. Meena Kumari, leaving her younger children at home, took her oldest there every day for therapy. She saw that there were other children like Anjali and learned that her daughter has Down Syndrome. (She still can’t pronounce the name properly and doesn’t know about that extra chromosome that causes the condition.)
 
In 2002, Anjali was admitted to a government school where she managed to study till Class 5. But the teachers were not attentive towards her. One day she was thirsty and, finding there was no water in the school, wandered off for about a mile or so to quench her thirst. When an outraged Meena Kumari confronted the teacher concerned, the latter said there were other kids to be looked after. Meena Kumari pulled her daughter out immediately.
 
Meanwhile, Anjali was thriving at Tapovan. Physiotherapy helped her walk on her own for the first time in her life. She was taught basic reading, writing and counting, and was participating in sports, cultural and vocational activities. She discovered a new passion that suited her: bocce, a ball game akin to boules. She was so good she participated in national and state-level competitions but she has quit now because of weight gain.
 
Anjali’s three sisters have always been very good to her. Jyoti, 28, is married and the mother of two while Kavita, 20, is in college. However, it is Nidhi, 26, to whom she is closest. Nidhi is also married and has a son, Cheeku (5). Anjali dotes on her nephew, and considering that Nidhi's marital home is just 10 or 12 km away, she is a frequent visitor there. Nidhi’s mother-in-law is also very fond of Anjali. When Nidhi gets busy with the harvest season, Anjali goes over there to take care of Cheeku.
 
Now 30, Anjali takes care of all the household work like cleaning, washing and cooking. She particularly likes cooking and has a weakness for chicken dishes. She also likes dancing and has recently taken a fancy to playing the dholak. She also knits. The family rears chickens and Anjali helps in looking after them as well.
 
In her free time, she watches her favourite serial, Yeh Rishtaa Kya Kehlata Hai, either on the phone or on TV and gets upset if she is prevented from doing so. Ever since Kavita taught her to download videos Anjali grabs any phone that has net recharge!
 
Kavita says Anjali is like a second mother to her. She learned about her sister’s condition only in middle school. She feels bad when people stare or laugh at her sister. Meena echoes the feeling. However, Hari is more stoic. “Whatever God has given to us, we should accept. Jo hoga dekha jaayega (We will see what happens).”
 
Like all mothers, Meena Kumari is worried about their daughter’s future after the parents are gone. She wants to make Anjali financially independent so that her siblings can take care of her.