At 26-years-old Surya Hosein holds a black belt in taekwondo and boasts many accolades and awards in the discipline.
He is a lover of music and works a full eight-hour work shift like many of us.
For the most part, he is just a ray of sunshine, as his name “Surya”—Sanskrit in origin, suggests. But there was time his parents, Steve and Shelley Hosein, feared an abnormal life for him, having been born with Down Syndrome.
Surya’s birth came just one month after the Hoseins had lost their five-year-old son Troy in a fire at their home. Shelley tells Guardian Media of the painful experience, reliving that moment briefly, when she had to jump from their two-storey home at eight months’ pregnant with Surya, to escape the fire.
According to Steve, though the pain of losing a child was heavy, they looked forward to having their “gift” who was soon to be born. But what would happen next, came as a double blow for the Hoseins who were not prepared for the news, they would subsequently receive.
“When he was born, he had jaundice, so he had to stay at the hospital for a while. Finally, when I got home and we took him for his first visit to a friend of mine who was a paediatrician, she said, “You know, I have to run some tests on Surya, because I think he has Down Syndrome.”’
Tests, later revealed that he was. The news was shattering for the Hoseins who felt “cheated” having already lost one son and now having one who, at the time, they felt would have a poor quality of life.
“Not having any idea what that meant, for me Down Syndrome people were seen through a window in a house, always kept away, and this “R” word—retarded, it was like, oh my God, what more can we be given?” Shelley recalls.
The emotional burden became lighter, with help from family and friends, and the warm accommodation of Surya, by a lone institution at the time, which accepted children with different abilities.
Referring to the Igbo and Yoruba proverb—It takes a village to raise a child, Shelley relates, both she and husband Steve, decided they were going to give their Surya the best life that he could have. And so, the family would come together quite often to ensure Surya always felt loved and included.
This kind of nurturing would positively impact Surya, who though having challenges, was able to eat on his own and walk at the age of one. Medically, for a child with Down Syndrome, walking usually occurs around 28 months. This proved to the Hoseins, their son could have done anything a “regular” child could do.
While this was indeed a milestone to celebrate, the Hoseins faced yet another hurdle—they could not find a single primary school that would enrol a child with Down Syndrome. So ineffectual the search, they would eventually have to open their own school.
“We had to set up our own school. We took it upon ourselves to buy second-hand equipment from other schools and we set up a place called Bliss Learning Centre at Sydenham Avenue, St Ann’s Port-of-Spain, because there was no place for Surya to go to get a primary school education,” Steve said.
As Surya outgrew Bliss, he was sent to Goodwill Industries Special School, where he excelled, but it would also become the place where he had his first encounter with ‘name calling.’
“Surya told me one day at school, a friend called him the “R” word. He said ‘Mommy, I went straight to Ms Allen (school principal), and I told her and she fixed him up,’” recalled Shelley.
Steve argues, it is the lack of public education on people with disabilities which has left them behind. He feels the Government, as well as the private sector, needs to do more in this regard.
Guardian Media also learned the paralympian is a huge fan of soca star Machel Montano and also believes Montano is a huge fan of his.
“There’s an altar in the room right now with Machel’s pictures and CDs,” Steve said, pointing in the direction of Surya’s bedroom.
At his job at Digicel Imax, his parents say, he is absolutely adored and treated with utmost respect.
Asked what was their message to the world and to parents like themselves, who at times have also felt “cheated,” the Hoseins responded: “Always seek out as much information as you can and never think of exclusion, always think of working towards inclusion. Be bold about what you do with your child and for your child, and never give up on any inclination that your child might have, just work with them in that area.
“Develop their full potential with all the love that you can give them.”
“In this society, if people were as loving and forgiving as Surya is, as happy all the time as he is…holding no prejudice, we’d have a better world,” Shelley said.
World Down Syndrome Day was observed on March 21 with the theme Leave No one Behind.
As part of Guardian Media’s commitment to lead by example–highlighting the social issues that matter to you, it embarked on the campaign—”Word Up” on Down Syndrome…Lend Your Voice. The campaign focused on the advocacy for social inclusion of community, and also shared some intimate stories of some of the challenges faced by this community.