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“I like doing craft work and emboss painting. I have learnt to read the Bhagavad Gita shlokas”

Snehadhara Foundation in Bengaluru has been working for inclusion through the arts and meeting the learning needs of a diverse group of children and adults. One of them is Sujatha (44) Govindarajan, who has Down Syndrome (DS). Her mother Revathi remembers the early days of her daughter’s education. “In those days there were no special schools and so we had to send Suja to regular schools,” she narrates. “As my husband was in a transferable job it was difficult to have a fixed routine for Suja and every time the environment changed it was challenging for her.”
 
Revathi’s own journey has been an arduous one. “A bright sunny morning when I was 24 was when my daughter chose to step into this world, with a horde of complications, to perhaps change the course of my life forever,” she writes in a social media post. “A string of hospital visits introduced me to the world of Down Syndrome, special needs, and challenges.” When she realised here was no cure for DS she decided to accept it and move on, giving up her job in the process. Her three siblings provided enormous physical, mental and emotional support.
 
Sujatha was able to clear her exams till Standard 9 in mainstream schools despite uncooperative teachers and taunts from other parents. She had medical issues too: gallbladder removal, hyperthyroidism and later a cataract operation. “I did find myself crumbling occasionally despite all my resolutions,” Revathi admits. She herself grew up in a family that emphasised the value of education. She had to restrain her impatience when helping Suja with her lessons, and encourage her to learn at her own pace.
 
When the family was in Chennai, Sujatha attended Mathru Mandir, an institution for children with DS. In Mumbai she received the best support from the Spastics Society of India, which had experienced teachers. SSI had plenty of useful and interesting activities including dance classes by the famous Shiamak Davar. After they moved to Bengaluru Suja joined Snehadhara’s Direct Care Centre for children and adults with special needs. It is a semi-residential arrangement: she is picked up on Monday morning and dropped back on Thursday evening.
 
Geetanjali (Gitu) of Snehadhara says Suja has shown marked improvement, mingles with the others at the centre, and is able to independently manage her basic needs. She is good at emboss painting, an art that interests her. She was absorbed in craft work when Vicky Roy photographed her on the premises of Snehadhara. “She has improved a lot under their loving care and guidance,” says Revathi. “I am really grateful to them.”
 
Revathi is concerned about her daughter’s future, pondering the “who will look after her when I’m gone” question that every mother of a child with disabilities has in mind. She has a high regard for institutions like Snehadhara but feels the government should support and encourage more such organisations to look after persons with disabilities. She concludes: “Understanding disability is, in effect, understanding your abilities and finding your place in the sun.”