Friday, March 20, 2009

Bring an Open Heart and Mind

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 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 that here.)

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 called Airbrushing 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...


  1. A beautiful post. Absolutely the answer.

  2. I feel that by opening our hearts and minds to the "newness and possibility" we can then open others to see all individuals with different abilities in the light of their potential. :)

    Lisa, thank you so much for this INSPIRING post!!!.

  3. I love this. I love your blog. That quote from Candee is amazing and so so so so true.

  4. Come and link up your blog over at 5 Minutes for Special!

  5. Wonderfully written. You are speaking to how I feel. I really hurt when I hear that there are people who actually try surgery to change their child with Down Syndrome's facial characteristics. They had a show on once following a family in that process and I cried through the whole thing. I struggled so hard to understand how a parent could want their child to be something else so I watched it to the end. I don't judge those parents at all but I was sad for them. It is natural to want to spare your child, any child from the hard things in life but aren't all children at risk of the same things and every birth a risky proposition?

  6. My feeling is the best thing is to encourage people to look. Since my beautiful baby was born I look now - at people who are speaking in sign, at people on wheelchairs, at anyone and everyone who is "different." And now I see they are the same - and they are loved and isn't polite not to stare, IMO..We should all look, and be surprised by what we see!

  7. I think it's important to keep dialogue going and look for opportunities to educate through words and actions and attitudes toward our little ones. Great post.

    I have an award for you on my blog :-)

  8. PS: I love what Yo Mamma Mamma said. It's OK to look! and ask questions in a kind and loving way.

  9. My daughter was born without prenatal testing, despite the fact that I am over forty. She was my fifth child and I stopped prenatal testing after my first. The reason being that my child was always my child... and the targeting of the testing I found worrisome. Fast forward thirteen years and I have my adorable, and adored, baby girl! While the diagnosis at birth was world turning, it was not earth shattering. Perhaps because I had my darling to hold. I remember a doctor telling me that this is why people have prenatal testing... to be "prepared". While it was not expected, I would never have chosen to be "prepared". We moved quickly past the extra chromosome and saw our daughter. My heart is extended to those who find out during pregnancy, for they are missing the most important part of the diagnosis.... their child. I love your blog! And the cuteness that is Bridget. As children are loved by their families and integrated into the world, the fear and misconceptions of Down Syndrome will begin to fade. It is not so long ago that parents were encouraged by the medical community (which is heart breaking) to institutionalize their children. You are leading the way in breaking the misconceptions by this beautiful blog!