by Shelley Decoste
My very first official experience as a Self Advocate happened at a conference in Smithers in 1986.
It all began when someone from the Fort St. John Association for Community Living mentioned that they were interested in sending a couple of self-advocates to the first annual Northern Self Advocate Conference. “You have a big mouth,” they said, “and you always stick up for people who don’t really have a voice, so you should represent the community”. There were two of us picked, me and another guy, who were sent down to Smithers, BC. So we went.
They had a few different sessions to choose from, on leadership and stuff like that. I remember going into one of these sessions. It was called “Defining Disability”. We were all sitting in this big circle and the leader asked us: “What would be the absolute worst disability you could possibly imagine?” Well, he went around the circle, asking each person to name the disability, and give an explanation why it was the worst to them. A lot of people in the circle said “cerebral palsy would be the worst thing to have, ever”. They explained that having CP would mean you couldn’t walk, or talk, or dress yourself – that kind of stuff.
So, when it came to be my turn, the rebel in me got revved up. Instead of saying anything I just kinda slowly got up and walked all around the circle, and I looked every single person in the eye, as I slowly walked around the circle. Everyone looked at me as though I was crazy. And I remember standing there, in the middle of that circle and loudly and clearly announcing that: “ I have cerebral palsy. I walk, and I talk, and I dress myself. I CANNOT understand how anyone can think having CP is the worst thing ever”. And I noticed people’s looks of shock and disbelief because I was telling them that I have CP. One person even said – “If you had CP you would be in a wheelchair and you wouldn’t talk and you couldn’t do anything…” Look – a lot of people changed their minds when I told them I had cerebral palsy that day. I explained that there are so many different degrees of CP, and mine is mild. I told them that “I might jerk around a little bit, and slur my words, but I can get my points across quite well”.
And… that basically started it all. Self-advocacy city. I’ve just kept at it, and found opportunities to speak. To get out there and speak to people. I began to speak about self-advocacy and what it was, and what it would mean for other people to have a voice, and to be able to say what they were thinking and feeling. So I just kept at it and things started changing. What really changed is finding your own voice. And being able to see people just listening to me was really something. It was really scary at the beginning. It almost made me at a loss for words, because people were actually listening and paying attention to what I had to say. That’s a big thing for a person with a diverse ability, let me tell you.
There is another part to this self advocacy story. I had another organization that I was associated with – the Cerebral Palsy Association of Vancouver. They phoned me out of the blue – they had got my name from another parent in Fort St. John – and they told me that they had this guy, Lee Bazar, coming up to Vancouver. He was a stand-up comedian with CP, and he was teaching something about ‘speaking up for yourself’. They invited me down for a three-day seminar. I was 15. I wasn’t really interested in the topic, but it was exciting to have a trip to Vancouver. But once I got there and heard him. I saw how he conducted himself and despite his huge speech impediment he was still able to keep the interest of the group, and he was able to lead it with a lot of enthusiasm and he kept everybody’s interest up. And being a stand-up comedian, he used a lot of humour. That caught my attention – to use humour to get people’s attention – it hit home with me. I’ve always wanted a way to be a presenter. Like, you know, I remember even in school – you know how in schools they sometimes have presenters who come and present skits or little shows. Once a group of ‘disabled’ people came and watching them, and then watching Lee… it kind of opened a door for me and I started seeing other people with disabilities getting up and speaking. Being part of a movement. And I wanted a piece of that, and I have been successful at it lately.
I guess you could say I was always the person who was saying what everyone else was thinking. Even if it was a little out of line, it had to be said and frankly, I was quite happy to be the one to say it. I guess I’m still that way – just a little bit. I’ve learned over the years to use humour to say those things. Humour has always been a part of my life. I always try to find humour in the worst possible things. My dad is a bit that way. People look at him and shake their heads sometimes, because he can find anything hilarious. I always grew up hearing “laughter is the best medicine” and I took it for granted. It helps. I kind of feel like all my presentations start on a whim – it just comes into something with a meaningful message by the end. Life with disability, or diverse ability, means you just have to be willing to try new things, think outside the box. I’ve found anything with humour always sticks with me. So, how should I end this column? How about with a joke? Like when I start my presentations, I don’t need to talk about a speech impediment – I just mention my “CP accent”!