To Do: Make Friends with an Adult with Down syndrome
posted Tuesday February 23rd, 2010
There are “to do” lists strewn around my office, strewn around my life — in the car, the kitchen, the playroom, shoved inside my calendar, tucked into books. Mostly they say things like Call Adam and Buy Black Tights and Write Sue Chenoweth Thank You Note.
It’s the stuff that’s not written down that’s harder — the Big Stuff — like the promise I made to myself literally years ago that I’d get to know a grown up with Down syndrome.
Reading Andrea Fay Friedman’s responses to the “Family Guy” controversy reminded me of it. I can’t really figure out what I think of her responses, and that’s mainly because I’ve never known an adult with Down syndrome. I have trouble grasping where she fits into those comments and (frankly) where her family does.
Admitting that probably makes me a horrible person, or (I hope) just an ignorant one. One who needs to make some friends.
Not that every adult with Down syndrome will have the same abilities and perspective and sense of humor. I know that. But it’s a point of reference I don’t have.
Next time I make a “to do” list, I’m committing that one to paper.
Dear Amy,
That’s a very good promise you made to yourself. I write a blog about Sarah Palin (palingates) and in the course of researching Down syndrome in order to situate her attitudes within a wider context I came across a number of very accomplished adults with DS.
Sarah Palin is not very highly regarded by people with DS or with advocates across the board. The best she has offered the DS community so far is a donation of $1,000 to NADS from her Pac (money from donors, not her own), some platitudes about Trig being a gift from God and playing the victim or his behalf.
We have observed Trig during the Going Rogue book tour and were disappointed to see him without a coat or socks or pants or a hat, or all of them on several occasions in Nov/Dec weather, late at night, mingling with all and sundry during flu season. Her supporters wanted to see him, so on one particular occasion (Roanoke) she got him out of the bus at 11:45 PM wearing a diaper and a sweatshirt. The temperature was 41F.
I don’t know how you feel about Sarah Palin, but having a child with DS yourself, it would be a great experience for you to get to know some self-advocates in the DS community. As advocacy goes, Sarah Palin appears to believe her son is a victim who needs to be shielded and protected from normal life when it comes to a war of words, but she can’t find it in herself to shield and protect him from the weather or nasty germs.
I have been involved with children and adults with special needs for over thirty years, so it didn’t take me very long to realize that Sarah Palin’s approach to the subject was somewhat askew. She had a golden opportunity to bring it into the mainstream in a positive way, but went in the opposite direction, which is unfortunate.
This post was dominated by Sarah Palin because your resolution to meet an adult with DS stemmed from the controversy about Family Guy, Andrea Friedman and the former governor of Alaska.
I wish you and your family all the very best and hope Sophie will meet her challenges with the same enthusiasm as Andrea Friedman. Having a mom like you, interested in learning more each day, is an excellent start!
Regina
I guess some people will comment without bothering to read who you are.
Have you read this? http://mutteringmama.blogspot.com/2010/02/i-am-not-sarah-palin.html