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“My mother looks after me and feeds me. I have no speech and therefore no friends”

If a child can hear but doesn’t speak, an urban middle class parent would automatically search for the phone numbers of speech therapists in town. But what if the child is born to daily-wage agricultural workers belonging to the Rathwa tribe in Gujarat’s Chhota Udaipur, living in Dhandhoda, a village with a population of a little over 3000?
 
Bhimsinghbhai (45) and Manjulaben (40) already had a son, Parsingbhai, when their second son Axay Kumar was born roughly 16 years ago. The couple, who have had no formal education whatsoever, couldn’t even tell our interviewer Axay’s date of birth. We managed to gather a little information about Axay through his cousin Mehul who works in the Zilla Panchayat office.
 
When Bhimsingh and Manjula realised Axay could not speak and had problems with movement as well, they had no idea what to do. Mehul said the boy was diagnosed with an intellectual disability at a government hospital, the SSG Sir Sayajirao General Hospital in Vadodara. He appears to have a locomotor disability as well, for Manjula continues to take care of his basic daily needs such as feeding, bathing and dressing him. Axay’s grandmother Keshaliben (71) is the only other occupant of their house. They seem to have given up on the boy since he is “unable to speak or understand”.
 
Kulsing Chuniya, a special educator in the aided, private, Gujarati-medium, co-ed school, Shri PL Makwana Sarvajanik High School, who took Vicky Roy around to capture Axay and other children with disabilities in the region, told us Axay has joined Class 9 in this school. Since he obviously won’t be able to manage sitting through a whole day in school without his mother or an attender, Kulsing visits him twice a week in his home.
 
“Axay is now able to wear his clothes but sometimes the buttons don’t match the hole,” Kulsing informed us. “He can brush his teeth too but needs helps with putting paste on it.” According to Mehul, “Axay smiles when he is happy but cannot communicate anything else and therefore has no friends and plays no games.”
 
We wonder what goes on in Axay’s brain, for surely it must be ticking, though at a different pace than the rest of us.