As a
child, Duncan McKinlay would spend weeks constructing an intricate
city of Lego buildings and characters. Then he'd destroy it, and begin
the painstaking process of creating an exact replica. "There
would be over 100 Lego men, but every man went back on the same little
square, with the same leg extended to the same degree," recalls
Duncan, a doctor of psychology who's working as an intern at Bloorview
MacMillan. It was an imaginary world that Duncan could predict and
control, a world foreign to his own, where "I had no control
over my movements, my thoughts or other people's perceptions of me.
Duncan
grew up with Tourette's Syndrome, a neurological condition that involves
involuntary movements and sounds called tics. If you've bumped into
Duncan in our halls, you may have heard his characteristic snort,
bark or whistle, or noticed him shake his head. But it wasn't until
he was 18 - and read about Tourette's in a newspaper article - that
his differences were given a name. "I knew from a young age that
I had a big secret, that something about me was bad, and that I had
to hide it because my parents would get angry or kids would laugh
and point," Duncan says. "I spent all of my energy trying
to suppress the tics, which made me an explosive, irritable kid, and
then a depressed, suicidal young man."
Shortly
after Duncan began university, his life took a positive turn when
he was diagnosed. "Being educated about the disorder empowers
you," he says. "You can meet other people with the syndrome
and learn strategies about how to deal with it. Today I know how to
use what I am to my advantage, to see the different ways that having
the disorder is an asset."
Duncan
says his attitude has changed 180 degrees, and with it, his life.
On weekends, he flies coast to coast presenting workshops on Tourette's
to professionals and families, manages a web site (called Life's a
Twitch), and writes internationally on the subject.
During
the week, Duncan works with our family support service as one of three
rotations he'll complete in the next year. Duncan chose to do his
internship at Bloorview MacMillan because he felt it promoted an acceptance
of difference in line with his own. "There seems to be a recognition
(at Bloorview MacMillan) that a disability may serve as a roadblock,
but it doesn't mean that there aren't other routes for getting to
the desired destination. People here seem bent on finding detours."
Duncan
currently provides individual and group therapy to teens and adults
with brain injury. "A lot of my experiences are helping me to
understand the clientele," he says. "Apart from knowing
what it's like to be different and the various emotions that go along
with that, I'm familiar with a lot of the symptoms of brain injury
- issues with paying attention, managing anger and being impulsive
- because these problems are often associated with Tourette's."
So,
too, is the "invisible" nature of the condition, he says.
"When there isn't a wheelchair or a prosthetic for people to
zone in on and say 'this person has a difference,' their problems
are often interpreted as behavioural - as a matter of not trying.
When someone walks through the door I'm very invested in seeing who
they're trying to be, rather than some of the problems they're presenting
with."
In talking
with teens with brain injury, Duncan shares many of the strategies
he's learned to help other people feel comfortable with his tics.
"I tell them that if you look embarrassed about your difference,
if you separate yourself and break eye contact with people, if you
have your shoulders slumped and don't look proud to be who you are,
you'll have a much tougher time making friends. I've learned that
I have a tremendous amount of control over other people's reactions
when I show them that I feel fine the way I am."
Duncan
says it's important for kids with disabilities to see their difference
"as a quality of themselves" no different than eye or hair
colour. "How you work with that quality is largely how you interpret
it - it's not the quality that holds you back, it's the interpretation
of the quality."
Growing
up, Duncan says his greatest obstacle was ignorance. Because he didn't
know he had Tourette's, he couldn't explain his actions, leading others
to blame him for what they saw as attention-getting. Today, while
he's upfront and upbeat about his disorder, he finds sometimes others
aren't. When applying for internships, "some wouldn't even let
me in the door. One thing I found refreshing about Bloorview MacMillan
was that they gave me an interview when a lot of people didn't."
Duncan
continues to encounter - dozens of times each day - ridicule or fear.
"At this point, I'm a doctor, I'm good with kids, I like helping
people and I have a good sense of humour about myself. Yet I'm still
going to walk down the street everyday and someone will pull their
kid closer and cross the street, or giggle with their friends."
How
does he cope? "I know that one of the ways people react to unexpected
things is to laugh. They weren't born with a file in their head that
said: 'Things to do when someone barks at me.' But with 99 per cent
of people, they'll start to respond differently after two to three
negative reactions." Each time someone learns a little about
Tourette's from Duncan, he feelshe's "swathing the path"
for others like him, and hopefully helping them "circumnavigate
some of the hells I experienced growing up."
