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No growth, no gain?

| Wednesday, October 5, 2016

If the definition of success is the accomplishment of an aim or purpose,then how do youor is it even possible tomeasure success without the existence tangible results? For my first few weeks in Chennai, India, I felt certain that my success rate with the students of Vidya Sagar was going to be negligible if not entirely negative. The school is effectively a second home to children with a massively wide range of physical, cognitive and emotional disabilities, most of which are lumped into being diagnosed as Cerebral Palsy, which I think takes on a far looser definition in India than it does in the States. In working with the students and faculty at Vidya Sagar, I was reminded daily of my unique chance to provide foreign insight in the realm of disabilities care — of my potential to make real change by employing a new perspective. Simultaneously, I was reminded daily that any significant positive impact I could possibly have would be virtually invisible to me.

Thajeenisha is a seven-year-old girl who was one of the eight students in the class I was placed in. Of the eight, three could walk, but Nisha was the only one who could do so without fairly major support. Nisha, like her seven classmates, could not speak — but she could sing. The day that I met her, I sang to her a song that was a classic at the summer camp I grew up attending, but that Id never heard even another person in the U.S. sing before, so Im almost positive this little Chennaite was hearing it with fresh ears. I sang the song once through and Nisha squirmed and giggled at the melody. Upon finishing, she grabbed my cheeks and pulled my face close to hers, holding my mouth at her ear, and waited for me to begin again. I did, and Nishas face grew serious, as if she were deeply studying the sounds of a novelty song about a squirrel on a telephone line. As it turns out, she was. Almost immediately after the second run-through of my song, she could recite it back to me with no skipped or stumbled-over words and with truly impeccable pitch.

I think it goes without saying that at this point I was more astonished and impressed with Nishas musical talent and ability to memorize than I had ever been with anything in my life — ever. Valli, her primary teacher, was less than amused. In my absolute giddiness at what I thought was Nishas feat, Valli smiled humbly and nodded, the two of us not yet being close enough for her to break the news to me that Nishas singing habits were a remarkable but unfortunate symptom of her cognitive impairment. She was not processing any of the sounds, rather she was using them as a form of entertainment devoid of any purpose. She had an uncanny ability to parrot anything auditory that had piqued her interest: She would repeat exciting songs but not once would you hear from her a simple hello.

Working closely with Nisha for the rest of my time in Chennai, I made it my goal to elicit from her some sort of purposeful vocalization, or even a purposeful physical response to my singing, but something other than mere regurgitation. Every day, I would sing to her instructions of what she was meant to do. Melodies made out of commands like put the ring on the stickand use your hands to pick up the cupnever proved quite catchy enough for Nisha to pay any attention to, so she never related to the commands and performed the desired actions — thus, she didnt improve her hand function or her ability to feed herself, etc. Singing normal greetings to her elicited no reaction, so there was never a purposeful good morning,” “goodbyeor excuse me.The only vocalization that we were able to get out of her remained, after weeks of exercising new methods tailored specifically to her strengths, nursery rhyme reiteration.

I was quietly devastated, feeling that although perhaps a bit of tangible growth had been made with other students, Nisha, who was hands down the most advanced child in the class, had seen no such progress. Since I had been working so closely with her, I faulted myself for this. It was obvious to me that I had not been successful in my efforts to help this little girl lead a life with abilities even marginally closer to the ones she so dearly deserved. I felt this way until a moment in the middle of my second-to-last week working at Vidya Sagar, when I was asked to remove Nisha from the room and walk around the school grounds with her, as she was singing uncontrollably and being a distraction to the other children. To this point, I had not witnessed Nisha acting in any way with purpose or giving anyone any indication of her approval or disapproval of them and the way in which they treated her. Each day when one of her parents would pick her up she retained the same blank stare she generally had and kept on singing as she was led out of the classroom. She never smiled at anyone, never showed physical affection. But on this day, as Nisha and I were walking hand-in-hand through largely unused playground, Nisha stopped dead in her tracks, turned to me, looked me straight in the eyes, and wrapped her arms around my waist. She hugged me with a force that I interpreted as at least some level of intent behind the affectionate action, and when she was finished embracing me, she grabbed my hand again and continued to sing and lead me around the grounds.

It was in this moment that I realized my success with Nisha didnt necessarily have to come from a place of functionality. Being disappointed in an absence of progress having to do with hand-function or vocabulary was a toxic way to view work with children with such severe disabilities. Of course, such progress should always be viewed as absolutely wonderful if it happens to occur — but, at least in my experience, it didnt. Because of my work with her, Nisha is no more equipped to function in society. But, because of my work with her, I am positive that Nisha knows there is one more person in the world who cares deeply about her. Is this success? Perhaps not in the way that I had intended, but the cliche in me feels far better in calling this embrace a success than any improvement of hand function couldve dreamed of being.

Neil Lewis 


Sept. 12

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