On community, power and difference
Interviewed over the phone from his home in Victoria, B.C., June 2013
I think I'm someone who has “come out of the closet” (about my facial difference) in the last five years, and that has profoundly affected my life. I'm that person who's had a very successful life in terms of the basic markers in society. You know, I had a good career, I have a great family, I live in a nice house, I have all those things that you might “mark” and say “yeah, yeah, yeah, you're doing great.” Underneath that, though, was a certain loneliness about being the only person that looked like me, and a certain sense of being an outsider.
I'm a pretty outgoing person, pretty comfortable in crowds and all the rest, but I didn't talk a lot about my facial difference. I wouldn't say it was a raw, open wound; I just didn't make it part of who I was in a sense of wanting to speak openly about it. As a kid, I was always told that I would likely grow out of this condition, which was very funny; it was a sense that I was just visiting this place. I grew up calling it Cavernous Hemangioma; that's how I always understood it. But when I was recently with a doctor, he said, “Oh, no, that doesn't exist anymore. Now we call it a Vascular Deformity.” So I don’t have a label for it. But what I do know about it is, it's me. It has always been me and always will be me.
In about 2008 I got involved with a kid named Son Phenh (an 11-year-old from Vietnam, whose sponsors were struggling to get him treatment for a vascular malformation). I found myself thrust into the world of (the Canadian organization) AboutFace, speaking on TV, doing adult (conference) calls, and I discovered how powerful it is for me to be part of a community – to actually belong to something where I have a certain thing in common with other folks which we don't have in common with a lot of other folks.
There's a lot of comfort in belonging to a small community, but the real triumph is finding what connects you to all of community. And to me it's that sense of difference – and everyone's got it. Whether it's a facial difference or a mental illness difference or a skin colour difference or a gender difference or a not-feeling-great-about-yourself difference, or whatever, we all have those things that we can use to separate ourselves from others. The neat thing is to discover that's in everyone, and to find a way to use that to bond with others.
I was a treaty negotiator for years. I worked with lots of people who had come from so many different backgrounds, (but) we all shared a passion for wanting to build a bridge with our First Nations neighbours, at a time of great conflict. It was such empowering work. But the most empowering part, for me, wasn't the results, which was formal big agreements between First Nations communities. It was the power of working with folks on all sides of the table who came with such differences and such a sense of their differences. I think that power and that sense of defeat or triumph really does come from inside you. It's how we're willing to take what happens around us and interpret it for ourselves. Since 2008 I've been quite willing to talk where I find power and where I find my empowerment. And a lot of that comes from looking different.
You know, I say it all the time: If Brad Pitt offered to trade me tomorrow, I wouldn't trade . .