Saturday, November 6, 2010

Canadian woman with Down syndrome and her parents write book about friendship and inclusion

From The Record in Canada:

WATERLOO, Canada — The Waterloo couple always knew what they wanted for their daughter.

They wanted her to have everything other people take for granted — friends, work, hobbies.

Just because Karen Lord has Down syndrome, she shouldn’t miss out on a full life in the community.

“We started assuming inclusion for her,” said her mother Peggy Hutchison.

“That’s always our first choice.”

Building relationships, Peggy and her husband John Lord discovered, was the key to ensuring Karen became part of the community and not relegated to the fringes. (The family is pictured.)

That view often collides with conventional ideas about what people with disabilities need.

“We’ve assumed they’re happier or best off segregated,” said Peggy, a professor emeritus from Brock University who researched the idea of inclusion.

Many people with disabilities are kept out of regular schools and work environments, she said, and Karen’s parents had to work with organizations to figure out how to involve her.

“You always run upon barriers,” Peggy said. “It’s not in the past. We’ve got these attitudes.”

Friendships, unfortunately, are often overlooked for people with disabilities.

“They don’t realize that they have a right and a need to have friendships,” Peggy said.

Karen and her parents wrote together Friends and Inclusion: Five Approaches to Building Relationships, about their experiences in creating a good life for Karen.

Today, they’re launching the book at the Working Centre on Queen Street South in Kitchener at 2:30 p.m.

Peggy and Karen, who’s 31, were travelling around doing talks on how to nurture inclusion, and people encouraged them to write a book about how they applied those approaches in Karen’s life.

“It’s slow, but it’s a process,” said John, who is a co-founder of the Centre for Community Based Research in Kitchener.

Helping Karen make lasting, close friendships took careful effort from her parents, who adopted Karen when she was four.

“It had to be more intentional. It meant really trying to notice and nurture friendships,” John said. “Now Karen is very good at initiating on her own.”

They found it was best to explore several ways to make friends, including social networks like camp and church, leisure activities where Karen could meet people with similar interests and a support circle of friends and family they gathered to serve as guides in Karen’s life.

“Surround people with relationships and then you won’t need to surround people with services,” John said.

They’d watch Karen and see who would show an interest, then work to develop those friendships and give Karen the skills she needs to make sure they lasted.

And their diligence has built a happy, independent life for Karen.

Karen lives on her own in an apartment. She’s a certified yoga teacher and has a couple part-time jobs, including working a few days a week at the Queen Street Commons Café in the Working Centre. She sings in her church choir, drums and is part of a community band.

And she has lots of friends. Friends who share interests, friends from camp, friends who live nearby and friends far away she travels to visit.

The message Karen wants people to get from the book is simple and essential: “Friends are important.”