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“I hate getting dirt on my clothes. I loved my first red shirt which was soft and velvety”

When Sooraj and Anita Banjare’s fifth and youngest baby was born, they consulted the panchang (the Hindu almanac). It said that the boy’s name should begin with ‘la’, and that is how 15-year-old Love Banjare acquired his unique name. His parents soon discovered that he was unique in many other ways.
 
The couple, who live in Ameri village in Bilaspur, Chhattisgarh, took six-month-old Love to the All India Institute of Medical Sciences (AIIMS) in Delhi because he had trouble breathing and feeding. The baby underwent two surgeries: one to fix a hole in his heart and the other to prevent oesophageal shrinking. AIIMS also tested his eyes and found his vision was impaired. However, it was his mental makeup that caused the most concern among his family members. His behavioural issues became more pronounced as he grew older and today, at 15, his cognition and range of physical activities remain limited.
 
‘Diagnosis’ and ‘therapy’ are alien words in most of rural India. After listening to his father’s and his sister Pratiksha’s descriptions of his behaviour, we can only presume that Love has a developmental disability. As a child he would not play with other kids or react to his environment. He still doesn’t “look straight” at the person in front of him. He speaks in words, not full sentences, and he can’t write either.
 
We wonder whether he lacks fine motor skills. He cannot dress, go to the toilet or have a bath on his own. He has to be fed: he cannot wield a spoon, and if he is asked to eat rice on his own he picks it one grain at a time. He cannot play with any toy that involves twisting or turning (like winding a key). The ball is his only favoured plaything: he always has it with him, either holding it or throwing it around.
 
We also wonder if he has sensory issues. Sooraj tells us that Love had a red shirt which he was terribly fond of because it had a soft, velvety texture. He used to wait for it to dry after washing so that he could immediately wear it again! He hates the feel of dirt beneath his feet. He cannot stand dirt on his dress and when he sees mud on it he has to clean it immediately. He hates crowded places; Pratiksha tells us that once, when they took him to a wedding, he immediately wanted to go back home.
 
Love is fond of music and he remembers the lyrics. The family rarely goes out together because it is difficult to manage him, but on the occasions when they travel by car, he is super excited, says Pratiksha. He happily keeps repeating whatever the family members say.
 
It was Manoj Jangde, the director of Jan Vikas Parishad Evam Anusandhan Sansthan (JVPAS), who ferried photographer Vicky Roy on his bike (in the pouring rain!) to the Banjare household and to the houses of other disabled persons in Bilaspur. Sooraj, who is employed with the Chhattisgarh police and is currently posted in Raipur, visits home occasionally. The couple’s eldest son Kapil (25) is a school dropout and not keen on academics. All his younger sisters are studious, though: Pratiksha (23) is a graduate pursuing MBA while Kriti (22) and Urvashi (19) are doing their BA.
 
Love was enrolled in a government school close to home which has a wing for special kids, and given his multiple challenges the teachers were kind enough to allow him to study from home. A teacher would visit him every week to monitor his activities. He has passed Grade 6 (a scribe wrote the exams for him) and now he will have to go to a high school far away, but will this be a practical arrangement for the family?
 
Sooraj told us that JVPAS representatives had given toys to Love and called the family for meetings. But in view of Love’s inability to take care of his personal needs, Sooraj candidly says he is pessimistic about his son’s future. What pains Anita most is people’s attitude. They stare at Love and call him ‘mental’. Pratiksha worries about her little brother. She knows she and her sisters will get married and go away and wonders whether a future sister-in-law would be able to take care of him.
 
Love makes the world go round, they say. But love alone cannot help Love live independently in the world.