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Bring an Open Heart and Mind

Posted Jun 05 2009 5:07pm
I'm at the beach, briefly checking email and browsing my favorite blogs. (I've been trying to keep up-to-date on my blogging friends in need of prayers and positive energy.)

It has been a relaxed and sunny morning, and although I wasn't planning on blogging today, I didn't want to forget to pass along some of what I came across this morning.

If you haven't already found Candee Basford's
World of Possibility(formerly Art of Possibility), please spend some time browsing her blog--I promise you will come away from it feeling empowered, and wondering why we aren't all talking and thinking about disability, community, belonging, connectedness, & possibility the way Candee does. (I've linked to Candee before. Find thathere.)

Like most of us who are actively advocating for our children with disabilities, I often find myself trying to assess the way the rest of the world perceives Ds and disability in general. I try to find words to express what we see in Bridget and what we have experienced with and through her. I've discovered that there is a huge disconnect between what I knew and thought (or what I thought I knew) about Down syndrome before Bridget came along and what I feel compelled to share now that she's here.

I think people are uncomfortable with disability when they haven't consciously lived with it. (We all have disabilities, we just don't always realize it.) "Different" isn't so scary when we realize that "different" doesn't mean "less"--and "typical" doesn't necessarily mean "desired".

I've recently reconnected with many old friends (via facebook) who were unaware that Bridget was born with Down syndrome and were unsure of what that meant for her, and for us. What I've discovered is that despite an increase in public discourse and media attention in the past few years, Down syndrome itself is still largely misunderstood by the general public. Worse yet, I think misconceptions and inaccuracies abound within the medical community.

Several people have asked recently whether or not we knew about Bridget's diagnosis before she was born--we didn't--but the question has allowed me to talk a little bit about prenatal counseling and all the improvements that need to be made in this area.

Expectant parents deserve up-to-date, unbiased information about the condition, although many are still offered inaccurate information which paints a dim picture of the life and potential of people with Ds. People are shocked to hear of the incredibly high termination rates of Ds pregnancies. I believe that many parents are making choices based on limited information and stereotypes which unfairly highlight potential challenges in the life of a person with Down syndrome rather than highlighting the potential in the person. That's why so many of our children are stowaways, their "imperfections" undetected until arrival.

What got me thinking about all this was the link Candee recently posted to an article calledAirbrushing Away Diversity, which originally appeared in The Ottowa Citizen in March, 2008. The article, which tells the story of a couple coming to terms with their daughter's Ds diagnosis, discusses specifically the high termination rates of Ds pregnancies and the consequences of outdated views on Ds and biased prenatal counseling.

I was struck by Candee's comment on this article:

To their surprise, Michael and Leslie had Sydney - and within their relationship and love for Sydney, came to realize something new, something they were totally unaware of before Sydney. As it turns out, Sydney transformed the way they view the world and the way they see themselves. I've had a similar experience - it is heart-wrenching and heart-opening when one becomes aware that much of what we have learned in our society is just plain wrong. It all begs the question of what happens to us that makes us so closed to newness and possibility.
So what do you can we open others to "newness and possibility"--to see our children not in the shadow of disability, but in the light of potential? The discussion is an important one. Let's keep the dialogue open. Feel free to talk amongst yourselves, or write here...
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