May 26, 2019

chdownsyndrome

BY CHRIS HUSSEY

The first week of November is National Down Syndrome Awareness Week, but many students don’t know this.
In a survey of 28 students, only four knew about the campaign, which focuses on creating public awareness for the genetic disorder. Charlie Matjanec, an employment adviser in Accessibility Services at Conestoga College, said even though the Down syndrome population is small at the college, it is still very important to normalize the disorder and spread information about it.
“If I can introduce you to Bill or Nancy or Mary and allow them to speak on their behalf … I think that would go a great way to normalize it and bring it into a real environment for all of us,” he said.
Even though most of the students surveyed were not aware of the campaign, many of them had ideas for what more could be done to help people affected by Down syndrome. This included increasing awareness, engaging them in society and even using social media to create a conversation online.
In fact, this use of social media is already starting to happen. The Waterloo Region Down Syndrome Society, or WRDSS, launched a social media campaign ahead of the national awareness week. The campaign is known as, “31 days, 31 faces,” and Maryianne Domm, who sits on the board of directors for the society, said it is intended to create a positive message.
“We’ve had decades of negative being spread about Down syndrome, but it’s the positive that is really running the campaign,” she said.
Domm has personal experience with the disorder too. Her son, Colin, has Down syndrome and she said even though there might be barriers for him in his life, such as driving, she has tried to promote as much independence in his life as possible.
“Independence is a huge thing, because that’s what you want for all your children,” she said.
Down syndrome is a genetic disorder that arises from a chromosome defect. This defect often causes intellectual impairment and physical abnormalities, according to Domm. She added that the most common form of Down syndrome occurs because of an extra copy of chromosome 21, which is known as trisomy-21.
Matjanec said for disorders like Down syndrome it’s a challenge to change what he referred to as the “us versus them,” mentality. He said he supports the awareness week and the work that organizations like the WRDSS are doing to spread information about it.
“It provides an opportunity for the community to accept and realize the shared responsibility they have to each member of the community,” he said.

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