Awareness of Awareness

October is Down Syndrome Awareness month. That's the reason I've been posting every day. Many of my posts have just been cute or funny and I wanted to take a minute and get back to Down Syndrome Awareness. When Nathan was first born I didn't really think much of "Down Syndrome Awareness" as a cause. I mean, it's Down Syndrome, we're "aware" of it, what is there to talk about or (especially) raise money for?
I see things differently now. I am more aware of the general ignorance surrounding Down Syndrome. I am now aware of the fact that many expectant parents think this condition is so awful and that it leads to such poor quality of life that they routinely do prenatal testing to rule it out, and most who have a positive diagnosis of Down Syndrome terminate their pregnancies. I am more aware of the way people with cognitive disabilities are viewed in society and the hurdles they face. See this blog post by Dave Hingsburger for a well-written post on this. I hear stories from friends about hurtful things people say in public about their children. I see that people with Down Syndrome have challenges with learning and school, with independent living skills, and with fitting in to our society and enjoying the same freedoms and choices that others do-- the freedom to live independently, to work, to marry, and to participate in society without fear of maltreatment.
Down Syndrome Awareness month doesn't get much press. October is also Breast Cancer awareness month, and people are much more aware of the pink publicity. It's everywhere from grocery stores to major league baseball. Not to devalue breast cancer, an important issue affecting many women, but it would be nice to see the SF Giants sporting blue and gold Down Syndrome ribbons this month!
Our Step Up for Down Syndrome walk raised money for our local Down Syndrome group, the Down Syndrome Information Alliance. One of the important things this group does is to provide information to new and expectant parents. They also provide ongoing family support and education, bringing in speakers to educate parents about various topics related to Down Syndrome.
I noticed that the local Autism Speaks walk raised much more money than our Down Syndrome walk. What's up with this? Well, I think a lot of people are where I was, wondering why we need Down Syndrome awareness. Also, people are trying to find cures for things like breast cancer and autism. We're not trying to cure Down Syndrome. I think acceptance is not as sexy as cure, in terms of getting people to rally behind a cause. Cure sounds important. We picture laboratories and scientists with little beakers of something magical, and with a donation, being a part of this cure. Acceptance sounds... boring. Or like something we could each just do quietly, in our own communities, without raising money. Now, the Down Syndrome Research and Treatment Foundation is funding research to enhance cognition in Down Syndrome. They don't propose to cure Down Syndrome, but to find drugs to help people with Down Syndrome learn and remember better. Cognitive disability is one of the major challenges that comes with Down Syndrome, and research is being done at Stanford University, John's Hopkins and UC San Diego to improve this challenge. Research is also being done at the University of Arizona to develop better tests of the cognitive abilities of individuals with Down Syndrome. And let's not forget that people with Down Syndrome are more prone to Alzheimer's dementia and that research to help prevent this condition in individuals with Down Syndrome can also benefit others at risk of developing this very difficult condition.
So, there is important research being done to improve the quality of life for individuals with Down Syndrome, and it is research with wider implications. This is important, and it needs funding-- why is this not a more publicized aspect of Down Syndrome awareness?
For a variety of reasons, this is not a cause that gets much press. So here I am doing my part to explain why I think Down Syndrome awareness is important, why I'd like to see my local grocery store decked out in blue and gold balloons and Tim Lincecum wearing a blue and gold ribbon this month. There is much advocacy left for us to do, and one piece of this is awareness of the importance of awareness!