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Sunday 15 July 2018
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World Down Syndrome Day Give them a chance

Glen Niles (left) chairman of the Down Syndrome Family Network is all smiles with his son, Tyrese Niles (right).

DANE GULSTON is as proud of his son Daniel as any father could be. Gulston only sees as possibilities what some might see as limitations. He knows that his son is just as capable, or even more so, than many might give him credit for. He wants TT to give people with Down Syndrome a chance.

Daniel, 14, is a pianist and happens to have Down Syndrome.

Today, the world is observing World Down Syndrome Day. It has been observed officially by the United Nations (UN) since 2012 and this year’s theme is #WhatIBringToMyCommunity.

While global debates centre around abortion and Down Syndrome, with a CBS network “on assignment” report last year saying Iceland has come close to eradicating Down Syndrome thanks to prenatal screening, Gulston knows how special a child with Down Syndrome can be.

Pannist Dane Gulston holds hands with son, Daniel (left) and older son, Deneilson. His son Daniel is Down Syndrome. But Gulston says he 'does things normal kids cannot do as yet. They way he plays and certain things he does is kind of amazing.' Gulston has called for greater inclusion for people with Down Syndrome and disabilities.

Of his son, he said, “He does things normal kids cannot do as yet. The way he plays and certain things he does is kind of amazing. If he could get the chance of being around the normal kids more and more, I think they will develop even faster.”

Daniel has had as normal a life as possible, playing pan, interacting with teenagers his age and being part of the panyard environment. He has also been widely embraced by the Massy All Stars Steel Orchestra and the Duke Street, Port of Spain communities. He has become such a “main person in the community everyone will ask for.” He plays with All Stars and is also very involved in the City Sun Valley Orchestra of Nelson Street, Port of Spain.

But there were challenges for the Gulstons. Gulston and his wife Dianne’s biggest fear was of Daniel falling and injuring himself. “How we went to Immortelle Children Centre in St Ann’s, he was always rougher than all the other children. He would always try to attack the other children because he was always stronger than them (and has an older brother, he would rough-play with).

“That was one of our challenges. After a period of time, he sort of calmed down when he began playing the music and began interacting with the normal kids in the panyard.” While Daniel has had a lot of opportunities, TT’s system needs to make greater efforts at inclusion for people with Down Syndrome, particularly in the school system, Gulston said.

He had a strong message for parents with Down Syndrome children and to TT.

“Give them a chance and try, as much as you could, to find their forte and push them on what you’re seeing they could do. Take it from me, they will surprise you. Government and whoever the powers may be need to find ways of doing more and spending more on children with Down Syndrome and disabilities. If there were more of them and more people thinking like them, there would be a lot less crime.”

David Egan (left), self-advocate and World Down Syndrome Day conference feature speaker, Lisa Ghany (right) honorary board member of the Down Syndrome Family Network. The network is hosting its annual UN World Down Syndrome Day conference at Hyatt Regency Trinidad and on March 23 at Magdalena Grand, Tobago.

Like Gulston, Lisa Ghany, honorary board member of the Down Syndrome Family Network (DSFN), believes the system as it stands does not support inclusion. She said in e-mailed responses, “Although Trinidad and Tobago has ratified the UNCRPD (United Nations Convention on the Rights of Persons with Disabilities) in 2015 persons with disabilities have very few legal rights. The system as it exists does not support inclusion.” Addressing this begins with education, Ghany said. “The first and most important area that we identify is education. Everything starts there. If a person is not educated /trained then they cannot participate in society or get a job. Employers are looking for a person who has a skill, so we must be able to have persons with Down Syndrome and other disabilities attend school.”

Inclusive education, she said, is the global standard, but TT encourages special schools, which “do not develop the potential of the kids and equip them to live independent lives. Until we change that our children will always be at a disadvantage.”

While she said the movement toward inclusion for people with Down Syndrome has started, it is slow in coming.

For things to change, Ghany said, “We need a collaborative effort with all Government agencies and we need legislation to be passed and enforced that protect the rights of persons with Down Syndrome.

“On an individual basis we need to learn more about persons with Down Syndrome and disabilities so that we act from an informed position. We need to stop thinking of them from a charitable standpoint and look at them as human beings with the wants and needs the same as a typical person.”

The DSFN will host its annual UN World Down Syndrome Day conference today at the Hyatt Regency from 9 am to 5 pm, with registration at 8 am. The conference, entitled What I bring to Community and What I bring to my Workplace, will feature keynote speaker David Egan, a US self-advocate. The conference is free to people with Down Syndrome.



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