Accessibility: Community Living self advocates take pride in accomplishments

Self advocacy is a concept most people take for granted, but for those with intellectual disabilities, says Kelly Perras, it marks a huge step toward creating a society "where everyone belongs."

After all, says Perras, past chair of Community Living Oakville's (CLO) Self Advocate Committee, having a direct say in the services people receive not only fuels their independence and self-worth, it helps achieve the kind of results in life anyone would cherish, not the least of which is inclusion.

"To be included, people need opportunities and jobs," she added.

Perras made her comments at CLO's recent Advocates Lunch, during which she and other self advocates spoke passionately about the need to have people with intellectual disabilities drive services. Among them was current Committee chair Kaitlin Nesbitt, whose point of view came in loud and clear.

"Self advocacy is important because people need to realize we are adults, not kids," she said. "People with intellectual disabilities have just as much right to speak up as anyone."

Like the other self advocates, Nesbitt is a success story: she holds down two jobs, one with CLO and the other at the Region of Halton.

"I know I am just as important to my employers as they are to me," she said.

In a nutshell, explained CLO Executive Director Andy Rotsma, self advocacy basically involves people with a disability who want to "have a voice in where they're heading."

This includes having responsibilities and availing themselves of choices about who they live with (such as in group homes or not) and where they work.

In fact, studies have shown that the greatest determinant of vocational success was the degree of control achieved by an individual over his or her life.

This, however, involves a delicate balancing act between supporting someone who has an intellectual disability and making choices which seem necessary for that person. Empathy, therefore, is key, both among CLO staff and the public at large, if bias and myopia in service design and delivery are to be avoided.

"It's important to come together over a new idea," said Nesbitt.

CLO provides residential, employment and life skills coaching for adults and children with intellectual handicaps. The agency's Community Relations Manager, Jody Blaauw, said self advocacy is something of an "alien concept" in some circles and, according to Rotsma, CLO is one of about 25 out of 107 agencies belonging to Community Living Ontario which has a Self Advocates Committee.

Rotsma went on to say that in the 1970s, when CLO was known as The Oakville Association for the Mentally Retarded, the agency was the first to establish a self advocacy committee. Unfortunately, this withered on the vine but in 2002 it was resurrected with Perras at the helm. Today, says Blaauw, CLO is at the forefront of a "new movement" thanks to the dedication of past and present Committees.

"We're really proud of what they've done," said Rotsma.

This also marks a growth experience for Committee members as they develop independently to increase awareness both within both the agency and the community about what it means to live with a disability. After all, added Blaauw, most people learn about intellectual disabilities from sources like books while people with intellectual disabilities "wake up with it and go to bed with it."

No one knows that truth better than self advocate Steven Muir, who alluded to the painful years of being shuffled around the system and the fact that, even though he has an intellectual disability, he remembers everything that's happened to him. As a result, he said he and others like him understand the barriers facing someone with an intellectual disability from the inside.

"It still means we want what everyone wants, a job and a place to belong," he said, adding that if CLO staff "know where we're coming from, they can help us better." "When people see me as a self advocate, they believe in my progress."

Muir - who was elected to CLO's board of directors - became a campaign worker for Oakville MPP Kevin Flynn and not only volunteers at his Oakville Constituency Office once a week but is also a member of Liberal Party of Oakville Riding Association executive.

"Don't let fear stop you," he said.

This close association, said Flynn, has been a real education for him.

"It's certainly taught me a lot," he said, adding that self advocacy makes perfect sense. "It seems so normal, the right thing to do. We've become so preconditioned to not include people who are different."

CLO Board Chair Dianne Garrels, who referred to Flynn as a "great friend" of the agency, explained that provincial changes are transforming the way services are delivered, not the least of which is the emphasis on inclusion.

"If we include the most vulnerable people in society we will be transformed like no other society," she said, explaining that inclusion can be as benign as casual conversation or inviting a neighbour over for dinner.

Valuing everyone for simply who they are, Garrels continued, will create a trickle-down effect of having the public better appreciate those who work with people who have an intellectual disability and perhaps even result in increased wages in a sector that is currently under-funded.

In the meantime, said Perras, CLO will be celebrating its 50th anniversary and all the successes that go with it.

"After 50 years, we have a lot to be proud of," she said.

Howard Mozel
June 3, 2005 Oakville Beaver

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