Canadian Down Syndrome Conference 2012
Home, after a weekend in Toronto at the Canadian Down Syndrome Society's annual conference. Although I've been a number of times, it's not often that the kids can join me—this is only the third time in the 18 years Russell has been a part of our lives.
These weekends are amazing, and I'm almost always surprised at just HOW amazing they are. You'd think I would be used to it by now but it always takes my breath away. I'll just say it: people with Down syndrome rock my world, from the little babies all the way up to the seniors (and YES, we have some now!). It's great learning new things and it's great seeing the families we've come to know over the years and meeting new ones. But it comes down to the kids themselves. If this was a different kind of conference, where the kids stay home, it wouldn't be the same.
Overwhelmingly the theme for me this year was that adulthood is going to be ok for Russell. We're at that liminal stage—you know the one where they're not kids anymore but they're not yet adults? Russell is so done with school, but to continue to access some services he has to stay. His friends have gone off to college/university or the workplace, and he wants to be there too. We're working on it: school half days next year with co-op placement in the afternoon. But the world is a scary place for a parent of a child with special needs. It's not set up for them. Everything is harder, and almost everything is a fight, one way or another.
But, BUT, listening to the young adults of the VATTA committee (Voices at the Table Advocacy), which is made up of adults who advise the CDSS board, I am once again struck by how they make their own way. They are forging paths that just didn't exist before. I'm going to talk about them in a minute but first I want to talk about Marlee Matlin, and then I will tell you about an exceptional film I saw about a group of young people who hiked to Machu Picchu and the experience that changed lives.
The keynote speaker for the conference was Marlee Matlin, actor, author and advocate. I've long been an admirer, since seeing her so many years ago in Children of a Lesser God, and have followed her career with interest. As a deaf person she knows firsthand the challenges faced by people with disabilities and their barriers to success. She is the first to admit that she was lucky. First, she had parents who insisted that she attend her neighbourhood school with other children and that she go outside to play. This is no small thing: schools have resisted children with disabilities for a long time, especially in those days, and parents' first instinct is to protect their kids and keep them safe—at home and in special classrooms and schools. Matlin credits her parents and her teachers, who guided her and mentored her, with helping her walk around the barriers put in her way. Her world opened up when she learned to sign and was able to express herself. The ability to communicate is vital. One thing I didn't know was that an early mentor was the actor Henry Winkler, and he has stayed part of her life. It's hard to describe what it was like seeing her in person. She is so warm, so genuine, so interested in others. Lovely, radiant, and inspiring. Her presence was overwhelming. Her words to us were, "If you will it, it is not a dream." From her I took the message that my instincts to include Russell in school, in work, in community life, are correct. Despite the constant challenges (and the occasional questions about my choices and my parenting) I am doing the right thing. Stay the course, so to speak. A valuable lesson.
Next, in the big picture sessions, I took in a presentation by the VATTA committee about the evolution of Down syndrome. The first thing they pointed out was that Down syndrome itself has not changed. It is still the presence of a third 21st chromosome. What has changed is societal attitudes toward it. They briefly showed how it had been in the past, with institutions, special schools and the like before moving into their own stories. These six young people held a room of about 150 people completely captive for over an hour. They told tales of inclusion, of school, of work, of community involvement, and of the struggles they sometimes face in their day to day life. (Actually, my favourite part of the session was during the Q&A when someone asked Matthew the struggles he faces at his job at Sobeys: "It's hard to get the carts through the snow," he says. Indeed.) Because of the age and geographical range of the people on this committee, not all of them had the same opportunites and experiences growing up. But they rise to their challenges with such grace that we can all learn from them. VATTA was set up in 2005, the year that we in Waterloo hosted the CDSS conference. Their personal growth since that time is astounding. Give someone an opportunity and just watch what they can do with it.
Finally, on Sunday we saw a screening of the film Trisomie 21: Le défi Pérou (Just watching that trailer had me weepy all over again). We watched an English version of the film (the original French plus subtitles, with an English narrator)*. Astounding. Montreal CEGEP teacher Jean-Francois Martin, whose son Karl has Down syndrome, decided to put together a trip to Machu Picchu for his students (college-age kids studying special education) and paired each of them with a young person with Down syndrome. What he intended to show, I presume, is that even people with challenges can perform great physical feats and feel a sense of accomplishment, easily transferable into other aspects of life (see Outward Bound). What ended up happening was much deeper than that. The trip was gruelling for the kids with Down syndrome, and the students paired with them were forced to dig deep to find their wells of support and compassion and put their own challenges aside. When they do finally reach the summit, the emotion is overwhelming. The personal growth shown in the college kids is the most noticeable, I thought. Some may find this film a bit sentimental—certainly one reviewer said something of the sort, But it is very hard not to be moved. I was openly sobbing as we watched it, and I wasn't the only one. Message again: give people a challenge and they will rise to it.
* My goal is to try and bring a screening of this film to the independent theatre in my town. Currently the English version is not in circulation, so I have a challenge myself ahead of me.
So that was my weekend. There were lots of other great moments, some small, some big, but this post is already too long. I'll be writing up some individual sessions for our association newsletter but these are first impressions. I leave you with some pictures.
