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The Toronto Star

McMaster research studies everyday lives of intellectually disabled

TORONTO STAR Article on SSHRC-funded project: Mapping the Self in Public Space: People with Intellectual Disabilities’ Everyday Use of Space.

Jul 25, 2013

Original Toronto Star article by Laurie Monsebraaten Social Justice Reporter

Sean Rowley lives with his mother in a modest brick home near Toronto’s Eglinton West subway station.

But as McMaster University researcher Ann Fudge Schormans has discovered, the outgoing 29-year-old is very much engaged in his city.

A typical week includes delivering baked goods via public transit for his part-time job with Lemon & Allspice Cookery in Leaside; boarding the College streetcar to his Bollywood dance lessons at the National Ballet School’s Jarvis St. studios and zipping down the University subway to attend self-advocacy meetings at a midtown community centre.

He regularly eats out in restaurants in Little India on Gerrard St. E.; attends literacy classes at Frontier College near Yonge and St. Clair; and volunteers at St. John’s Mission near Broadview and Queen St. E.

But what are those experiences like for Rowley and others with intellectual disabilities?

Schormans is hoping to find out by following Rowley and 11 other Toronto residents this summer as they go about their daily lives.

Her innovative research project, “My Life in the City,” is using GPS and Geographic Information System technology, voice recordings and iPads to record their experiences and map their community connections. If successful, Schormans hopes to expand the pilot project to northern and rural communities across Ontario and Canada. It is funded through a grant from the federal Social Sciences and Humanities Research Council.

Ontario began closing institutions for people with mental and intellectual disabilities in the 1980s. Although there is some research about how these individuals have fared in school and employment settings, Schormans could find little else about what they do in the community.

As Rowley’s busy schedule attests, many with intellectual disabilities, including those with Down syndrome, low-functioning autism and other developmental delays, are eager to participate in city life. But what happens when they do?

“It’s not just where they go, but why they go there, what they do, who they talk to,” she says. “Did they choose to go there on their own, or did a social worker or someone else send them? And is this somewhere they even want to go?”

Questions of safety and whether this group feels excluded, ostracized or discriminated against are largely undocumented, Schormans says.

“What places do they avoid and why? What is it about a place that makes them come back?”

Schormans, who worked with people with intellectual disabilities for 20 years before becoming an academic, is collaborating with a variety of researchers from McMaster and the University of Toronto’s geography, social work and social sciences departments as well as community-based artists.

 

 

Schormans is accompanying each participant on three walks to create personal narratives around their life in the city.

In the fall, participants will meet as a group to share their stories, talk about common issues and discuss what the public and service providers need to know about them. They will script dramas around these issues, act them out and produce videos for a public forum next year to present the project’s findings.

All of the material will be available on a website for teaching and community use, she says.

The 12 participants, who range in age from 29 to late 50s, come from a variety of backgrounds. Some, like Rowley, have lived in the community all their lives in the care of their families. Several grew up in institutions for the developmentally disabled and now live on their own or in group settings in the city.

Rowley, whose mother is a retired school teacher, is one of the youngest and most well-travelled, Schormans says.

“His map will be quite large,” she says as she accompanies him onto the College St. streetcar. “Some of the others, those who live on their own, don’t venture very far outside their immediate neighbourhood.”

“Others lead very impoverished lives and their map centres around food banks, missions and churches that offer free meals,” she says. “Their travel is a whole different experience than Sean’s.”

Where does Rowley go on public transit?

“Everywhere,” he says with a broad smile. “I like it.”

But he doesn’t like it when people stare or give him “funny looks.”

“It is scary when people stare,” he says. “They are not friendly stares.”

What does he do?

“I just ignore it.”

Do the drivers notice?

“No.”

Does he talk to people when he takes transit?

“Only people I know,” he says. “I don’t talk to strangers.”