Severe cerebral palsy has not stopped 17-year-old Jethro Daniel from conveying his thoughts through verse.
On Daniel Victor and Lata Daniel’s fifth wedding anniversary, their son Jethro Daniel was diagnosed with severe cerebral palsy and microcephaly. The first prevented his brain from coordinating his movements and the second, stunted its growth. “At best, you can only manage the disease,” the doctors told them; “There’s no cure.”
As Daniel and Lata drove out of the Mumbai hospital, there was an unusual sense of calm which said, “Now that it’s been allowed to happen, we’ll also be given the strength to overcome.”
Today, Jethro is a 17-year-old boy of very few, but profound, words — none spoken but still expressed in a manner most unconventional, often to form poetry.
Jethro’s diagnosis first lead to physiotherapy at the Spastics Society of India but he was left still unable to move individual limbs. He could however, answer ‘yes-or-no’ questions by lunging forward for’ yes’ and backward for ‘no’. His parents tried to enhance this cognitive ability by providing varied stimuli such as plants and toys, and his older sister Rhoda read aloud to him often, but Jethro rarely responded.
However, as a four-year-old at a gift shop one day, Jethro lunged toward a box of alphabets which his parents then brought home. “Several days later, we spread the alphabets on our bed, called out each letter and to our greatest surprise he moved toward the right one each time,” says Daniel.
Thus began Jethro’s discovery of self-expression. Soon he signalled at letters to form small words and in time, wrote his first poem to teach his sister the four cardinal points:“Little nose to the North/ South hardly behind/ East on the sunrise site/ West opposite”. “As he grew taller and I grew older, it became difficult to carry him while he lunged towards letters spread far apart,” says Daniel. So now, the letters are arranged in a few rows on a table mat and Jethro sits on Daniel’s lap and signals with his shoulder. Practise has taught Daniel to read his son’s most subtle movements. “A deeper lunge meets a letter in the further row, a smaller one means a letter closer by.”
Through this method, at 16, Jethro penned a small book of 11 verses titled, Don’t Mess Around. They feature his thoughts on pride, creation, honesty, love, the mind, work, youth and the Nation.
Of the last he writes, “Wonderful is the state of my parenthood/ Charming is its poise and grandeur/ Without truth and character how barren are you/ Poised the way you were never meant to look.” When Jethro does speak, it’s rarely of himself, says Lata. “He’s deeply intuitive of our personal lives, is very attentive to our conversation and responds to happenings in the world around him, political or otherwise,” she says.
Lata leads two lives — the first Jethro’s and then hers — for Jethro requires her assistance for every movement. He spends most of his day with his limbs held in place by splints, and occupies himself with music, movies and daily physiotherapy.
Bringing up Jethro has taught Daniel and Lata much. “Just watching him spend hours together in one place has taught me patience,” says Daniel. Jethro’s story has also moved Rhoda to write a booklet titled A Disabled Hero, about seeing disability differently, which has been translated into local languages.
Jethro’s life has also motivated Daniel and Lata to reach out to others in need. They began in 2011 with setting up small night study centres for children in the villages of Anaikatti and Mettupalayam.
This was augmented with a kindergarten school in Pollachi as well as a life skills training and job orientation program for college students finishing their degree.
What Daniel and Lata are most passionate about however, is a project they’ve begun in Dharmapuri district where eight families of children with cerebral palsy are provided with a therapist who conducts weekly sessions for each child individually.
Says Daniel, “As a father, all I hoped for Jethro was that he could someday walk and talk. But he showed me early on that because we are so used to the commonplace, we’ve become incapable of believing in even the possibility of the unusual. The truth is as he said one day, ‘To any situation, love and commitment brings hope’.”