Sunday August 20, 2017

Janet Charchuk explains what it's really like to have Down syndrome

Janet Charchuk and her mom Jackie.

Janet Charchuk and her mom Jackie. (Courtesy)

Listen 12:31

Janet Charchuk has spoken at the United Nations, she's won a gold medal in snowshoeing, she's fought for supportive and affordable housing, and she is an in-demand motivational speaker.

Janet also has Down syndrome.

"Down Syndrome is only a little part of who I am but that does not define me. It's just something extra there, it's just an extra building block," she says.

At 34 years old, Janet has an impressive resume and insists that Down syndrome doesn't get in the way of her helping others.

"I don't think it is a disability. I think it's more like a gift."

Janet and her mom Jackie live in Alberton, Prince Edward Island. They told Tapestry guest host, El Jones that living in a small rural community gave Janet opportunities to be integrated with her peers.

"I went to school with everyone else. I got involved with sports. I was not treated differently at all. People expected me to do the work in school and I did," Janet says.

"Because there's no special schools or special programs, she just went off and did what every other four or five year old did. No one really thought anything of it. It was just what was expected," adds Jackie.

Janet Charchuk

Janet Charchuk has won a gold medal in snowshoeing at the Special Olympics, she's spoken at the United Nations for Down Syndrome awareness, and has lobbied for supportive living apartments in Alberton, PEI. (Jackie Charchuk/Twitter)

A few years ago, like any other mid- to late-twenty-something, Janet felt it was time to move out of her parents' house.

Her mom, Jackie, was a little nervous when Janet first told her, but eventually she came around to the idea.

Then it was time to start apartment-hunting. Unfortunately this is where the problems began. Janet couldn't convince landlords and the town that she was able to live alone.

Never one to back down from a challenge, Janet lobbied the town council to create an assisted living dorm in Alberton. And she and won. The supportive living dorm had a staff that taught Janet and other residents how to live independently.

"In those dorm style apartments, you could actually learn life skills to learn how to live on your own."

Janet's hard work and determination paid off. Not only is there now supportive living in Alberton but Janet herself has moved out and has been living in her own apartment for two years.

Janet Charchuk chats with Prince Edward

Janet chats with Prince Edward. (CBC)

The Charchuks have seen a lot of changes in how people perceive Down syndrome over the last three decades. Jackie says that when Janet was born the doctors still used the term "mongoloid" and didn't give her much hope for Janet's future. "I just said, 'Give me my baby and we're going home.'"

"I actually did hear about some people being in institutions a long time ago. But now we're more visible in our communities and there's inclusion and people can see our abilities," adds Janet.


Click LISTEN to hear what Janet and Jackie Charchuk think are the greatest misconceptions about Down syndrome and the ways prenatal testing should change.