We arrived home last night, after spending 13 hours in the car yesterday. Thirteen hours gives a person a long time to think.
I began thinking about National Down Syndrome Month. I think it's kind of cool that Beth was born in October. But to be honest, I've never celebrated NDSM. I've always lived LDSD, Local Down Syndrome Day, every day, 365 days a year. And as most of you know, not every day is a celebration. :)
When Beth was born, there were no computers, no world wide web, no blogging. If you wanted to be a part of the Ds community, you had to pick up your phone (the one connected to the wall) and call your local group. NDSM wasn't advertised on TV, in the papers or on the radio.
So yesterday as we drove The Lonliest Road in America (Hwy 50 through Nevada) I was thinking about National Down Syndrome Month. If I had the opportunity to stand up in front of the nation and talk about Down Syndrome, what would I say? What would I say that would bring awareness to their lives, their lives that are completely void of Ds, void of the joys and sorrows that come with having a child with Ds, what would I say? What could I say that would change the way they look at Beth when we walk through the mall? What could I say that would change their perceptions of people with Down Syndrome?
To be honest, I couldn't think of anything to say that hasn't already been said. Today we have computers and all forms of media that can get information to the masses in just seconds. Yet, nothing has changed. People stare at Beth today the same way they did 25 years ago. Beth is still on the outside looking in. Maybe we need to saturate the nation the same way Breast Cancer Awareness has. Maybe we need an icon like their pink ribbon. Maybe we need a media blast. Promotions on the side of busses? Maybe we need to hound Hollywood so they incorporate more people with Down Syndrome into their movies and TV shows. I don't know the answer. I don't know what I would say to the nation.
What would you say?
2 comments:
You know... I was thinking about this the other day. I try... oh how I try to advocate for my little Justin and everyone else who has Down syndrome. But I do notice that most people still do stare or make comments. Not sure that it will ever change. I am so thankful that we do have each other. I think that is what helps me every single day. Mom's like YOU amaze me because you had to go through with it daily kind of on your own. With no "support groups" like we have now through facebook and blogs. I look up to you every single day.
I can't imagine what I would have done without the computer and resources I have available to me. You are amazing and I admire everything you must have done 25 years ago!
Thank you so much for sharing your living situation with me. I'm hoping for something very similar when Sutter is Beth's age. She's lucky to have such great parents!!!!
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