Monday, December 11, 2006

How far we have come! ... or have we?

Mike Shaw is the Chair of the Canadian Down Syndrome Society Board of Directors. I had the pleasure of meeting Mike when I was co-chair of the 2005 CDSS Conference. He is funny and very sociable. He is also VERY passionate about people with DS. One of the things I am liking is the direction CDSS is taking with regards to advocacy. Their stated vision is: "a proud Canada where ALL are welcome, we embrace diversity and we value everyone's genes equally". They have taken out ads in major newspapers and put ads on roadside billboards. I am hopeful that CDSS will become more and more vocal in the future.

Here is an article published in the Fall 2006 CDSS Newsletter by Mike. It is an excerpt from his opening speech given at the World Down Syndrome Congress in August 2006. Reprinted by permission of the author. I'll write my thoughts on this tomorrow.

Just over a year ago, the Board of Directors developed a new vision and mission for the Canadian Down Syndrome Society. We did not, however, do this unaided. We were guided by the wisdom of the Voices at the Table Committee. (Annette's note: Voices is comprised of adults with DS). This talented group of self-advocates wisely instructed us and made it clear: "Nothing about us, without us". We listened. And we believe our mission and vision reflects their goals.

We are determined to see a Canada where all are welcome. Two generations ago, when parents received the news that their new baby had Down syndrome, a recommendation to institutionalize that baby generally followed closely behind receiving the news. A generation ago, the determination of Down syndrome was still a sombre announcement - albeit one that came with the recommendation to raise the child at home.

Today we look around us and many of the adults in our midst were those babies one and two generations ago. They are here as self-advocates, as Ambassadors, and they are here celebrating their unique genes - celebrating the fact that they have Down syndrome.

How far we have come! Or have we?? Today, news of an impending birth where the child has Down syndrome is still met with the same negative attitudes as generations past. The difference today is that there will never be an opportunity to celebrate many - no, most - of these individuals with Down syndrome because so often the pregnancies are terminated.

Really, what has changed in these past generations? The general public attitude towards people with Down syndrome? Clearly not. The only thing that has changed is society's means of isolating itself from an entire segment of the population. We have moved from the isolation of institutions to the whole scale removal, in many cases with government funding, of fetuses with Down syndrome through more "efficient" screening technologies.

Nelson Mandela once said, "our struggle has reached a decisive moment". This is true for each and every one of us in attendance here this weekend. We are engaged in a battle for nothing short of a future that includes individuals with Down syndrome. And that battle has to happen now.

The message is clear. Individuals with Down syndrome are part of the mosaic that is Canada. They are as much a part of this land as any other individual. Celebrate their talents, victories, friendships.

Canadians need to hear and heed this message. We know we have a long way to go. A recent article in the Globe and Mail told of one woman's decision to terminate her pregnancy following a determination of Triple X in her unborn child. The article also elaborated on her pre-conception decision to abort the fetus if a test for Down syndrome were to be positive. While this woman may have been unique in publishing her story, she was not unique in her decision. But as loudly as that woman chose to tell her story, it will never be as loud as our self-advocates speaking out for themselves. Recently the Toronto Sun profiled Andreas Prinz, a member of our VATTA committee. All over the country stories are popping up in newspapers and on television that celebrate the joy of being or knowing an individual with Down syndrome.

Robert Kenney described it this way: "every time you stand up for an ideal, you send forth a tiny ripple of hope." If everyone stands up for an ideal - stands up for what we believe in - and celebrates Down syndrome, just think how large that ripple of hope could be. It won't be a ripple - it will be a wave - a new wave of beliefs throughout this country and indeed, throughout the world.

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