Breaking the stigma: World Down Syndrome Day
By Ainsley Smith
World Down Syndrome Day is coming up this Saturday; a day that aims to bring awareness to the condition.
The global event will celebrate its 10th anniversary on March 21. The date (21/03) was chosen to represent the fact that three copies of chromosome 21 lead to Down syndrome.
The event is a very important day for Canadians, said Kaitlyn Pecson, communications coordinator for the Canadian Down Syndrome Society.
“It encourages everyone with Down syndrome and their families to speak out and teach other Canadians to see their ability, to show that people with Down syndrome are fully capable participating members of their community and that people with Down syndrome can lead great lives.”
Down Syndrome, explained:
It’s a genetic disorder, which varies in severity, causing lifelong intellectual disability and developmental delays, and in some cases health problems.
Down syndrome is the most common genetic chromosomal disorder and cause of learning disabilities in children.
“World Down Syndrome Day is a day for people with Down syndrome to break the stigma and break the stereotypes around the syndrome,” said Pecson.
Living with Down syndrome
British Columbia mother of three, Candace Bryant, has a younger brother with Down syndrome.
“Mike as a child was a total joy. He was always happy, loved to play and sing and dance. Music was, and still is, his passion. Whenever we went anywhere, if there was music on, he would break out into song and start dancing.”
Despite having a supportive and loving family, Bryant said her younger brother still faced many obstacles growing up.
“When Mike was born, he was very underweight, so my mother had to feed him every hour. He also never matured intellectually beyond a three-year-old, never learned to speak very well and learned how to walk very late. He sucked his thumb for years, just basically remained a baby a lot longer than most kids,” she said.
“Mike as a child was a total joy. He was always happy, loved to play” – Bryant
But her brother’s developmental differences were never a problem for the family, she said.
“We loved feeling like we had a little brother for longer. He was born right before my birthday, so for years I thought he was actually mine. I thought he was my birthday present and I really loved to look after him.”
Children with Down syndrome are treated much differently now, compared to when Mike was growing up, said Bryant.
“Awareness of Down syndrome has definitely evolved since I was younger. Just as an example, when Mike was born all the doctors and my father and mother’s entire family wanted to have him institutionalized,” she said.
She said she had a friend whose sister with Down syndrome lived in an institution and came home once a month.
“All the doctors and my father and mother’s entire family wanted to have him institutionalized” – Bryant
“It was terribly sad. I was so angry at her mother for doing that. And it was so sad for their family to have this sibling come home for a couple of days and have to go back,” she said.
The progress in awareness and acceptance of Down syndrome is due to education and exposure, said Liz Sokol, a disabilities counselor at Humber College.
“These two things together are key for changing peoples understandings and perceptions. Many people are ignorant in the true sense of the word, as in ‘not knowing’ about different things. When people see someone who looks different in any way, they become judgmental,” said Sokol.
“Any person with a disability, and in this situation Down syndrome, with their facial features, and mannerisms, are noticed and stigmatized. This results in them being treated unfairly and unequally.”
Progression of awareness
The Canadian Down Syndrome Society of Canada was established 28 years ago, and when it was first created, it was still prevalent (although increasingly less common) for people with Down syndrome to be sent away from their homes, Pecson said.
“Now fast forward almost 30 years and people with Down syndrome are living fully independent lives. They are getting married, owning their own homes, going to school and having meaningful careers.”
Pecson encourages all Canadians to get involved by wearing a pair of colorful socks to celebrate the uniqueness and joy of the Down syndrome community.