2 adults explain what it means to live with Down syndrome in 2018 - Action News
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2 adults explain what it means to live with Down syndrome in 2018

Adults with Down syndrome are redefining the way society understands the disorder, but they still face tough challenges when it comes to living independently and realizing their dreams.

Understanding of the disorder has changed, but barriers to independent living remain

Natalie Stevanus and Ryan Steele joined host Craig Norris (middle) on The Morning Edition for an interview on March 21, World Down Syndrome Day. (Waterloo Region Down Syndrome Society/Facebook)

Like most young adults, Ryan Steele dreams of moving out of his parents house and living on his own.

"I'm planning to move out at some point in my life," he told The Morning Edition's host Craig Norris. "I'm aiming to fly the coop."

But unlike other 36-year-olds, the chance that Steele will find an ideal living arrangement is unlikely.

That's because Steele has Down syndrome and will require some kind of supportive housing if he is to live alone.

Lack of supportive housing

According to Arisa Alexanian, chair of the Waterloo Region Down Syndrome Society, adults with the disorder can wait 10 to 20 years for appropriate, government-funded housing.

"As far as options that are available, whether it's in this community or province-wide, it's a challenge," she told CBC host Craig Norris.

Alexanian said there is no funding for building new, supportive housing for adults with Down syndrome. To make up for the shortage, many parents are banding together to create their own solutions, but that can be costly.

"There are a lot of things that, obviously, our government has to focus their energies on and this is one of those ones that tends to fall to the back seat," she said.

"The honest truth is many of our adults are not voters. Therefore, they don't have that voice that you and I do. So, as parents it's our obligation to speak on behalf of our kids."
Ryan Steele has been speaking about his experiences living with Down syndrome, because he wants to inspire other people with the disorder. (Waterloo Region Down Syndrome Society/Facebook)

Speaking out

Whether or not he votes, Steele certainly has a voice and has been putting it to good use over the past few years.

His mother, Susan Hipperson, said he started public speaking about Down syndrome and his experiences living with the disorder.

"You also talked about your school experiences, about being bullied, right? That was one of the things that you thought was important for people to know," she said to her son during an interview on The Morning Edition.

Steele said speaking in public comes naturally to him, and that he wants to talk about his experiences to inspire other people with Down syndrome "to keep their dreams alive and work to make their dreams come true."

Steele isn't the only person inspiring a new generation of children with Down syndrome. Natalie Stevanus has been doing her own kind of outreach as an athlete in the Special Olymipics.
Natalie Stevanus does her own form of outreach as an athlete in the Special Olympic games. (Waterloo Region Down Syndrome Society/Facebook)

Outreach through action

Stevanus - who says she rarely thinks of her Down syndrome, because it's just "part of me" - has been actively participating in sports since she was a child.

She swims and enjoys ballroom dancing, but it is her commitment to competitive figure skating that has brought her to multiple Special Olympic games.

"At the competitions, what did you win?" her mother Linda Stevanus asked during The Morning Edition interview.

Natalie Stevanus, who is not quick to point out her accomplishments, simply said, "A lot of medals." In fact, she won a gold medal at one of those games.

Like Ryan, she hopes to move out of her parents home and live on her own one day, and also dreams of getting married.

She's also looking forward to the next Special Olympics winter games, happening in Alberta next year.