Thursday, October 7, 2010

Open Book

That's me.

Go "Anonymous" if you like.

This is my one open invitation for you to do so.

And don't worry about me tracking you down.

Anyone who knows me can tell you that I'm too lazy to do that stuff.

Even though I promised pictures from our trek to the land of battered fried cheese balls (mmmm), that will have to wait another day.

Why?

Because I unexpectedly had a few Ds-inspired moments today. They caught me totally off-guard.

While away, my TiVo overflowed. That should tell me that I watch too much crap, but instead of beating myself up about it, I grabbed some goldfish crackers (OMG, when did they get so good?!) and plopped on the couch to watch the latest episode of "Glee."

Now, if you don't watch the show, I must tell you that one of the characters in the ensemble cast is both coach to, and a younger sister of, a person with Ds. Her name is Sue.

So, in this episode, Sue is talking about her personal spiritual beliefs and how those came to be.

She said that she used to pray as a child because she noticed that her older sister, whom she idolized, was not respected by other people. They made fun of her. They called her names. And that made Sue very sad. She wanted it to stop. So she prayed for her sister to be cured.

<<< OMG, TEARS! >>>

So, yeah, I welled up a little.

And then, after that was over, I clicked over to "Extreme Makeover: Home Edition." Now, I don't usually watch that show, but I recorded it this time because a friend informed me that they were featuring a family that included six people with Ds. Michelle and I caught part of the episode, but I didn't see the beginning and I wanted to know the backstory. (Big ups to Blackberries with TiVo apps.)

I just feel like I have to say some things here.

I don't care what you hear on TV.

1. People with Ds are not banished to a life indoors. They can leave the house and live fulfilling lives.

2. Adults with Ds are not "kids."

and

3. It is insulting to call people with Ds anything other than people who happen to have Ds. Saying things like, "They're Down syndrome."? Really? How does that even sound right?

There was more, but those are the things that really stuck with me.

It was a nice house when they were done, so yay. But damn. No one thought to correct the voiceovers?

I also heard, on Rosie O's radio show this morning, a woman who called in regarding Glee say, "blah blah blah and then the part with Sue and her Down syndrome sister blah blah blah."

Grates every time.

Why must people say it like that? Why do so many people use it as an adjective instead of as a noun?

Honestly, I can understand if someone were to describe me as "the Black lady", but would you call me "Sore Throat Crittle"? Or, because Ds is not an illness and I don't want to even to allude to it as such, "Size 7.5 Shoe Crittle"? Would you say that I am my size 7.5 shoes?

I don't know if I'm being perfectly clear here, but the point I'm trying to make is that I have a sore throat and I wear a size 7.5 shoe. Those are not who I am.

Playette has Ds. It's not who she is. She is so much more than her diagnosis.

Ahem.

Ok, so at least as I watched "Teen Mom" tonight (don't judge me, my kid was already asleep), I noticed that they bleeped the R-word.

That made me feel a little better.

So.

What I originally came here to say was:

ASK ME WHATEVER YOU WANT ABOUT DOWN SYNDROME.

PLEASE.


There's a lot of bad info out there.

I want to help.

Do it for the "kids."

I'm kidding.

Only about the "kids" part.

Totally serious about you asking me whatever you want to know about all things Ds-related.

Personal or otherwise.

Go anon or email me directly if you must.

3 comments:

Lacia said...

Oh my gosh, I totally teared up at that Glee episode. When Sue's older sister is on, it gets me EVERY time!!

krlr said...

Ugh. I can't watch stuff like that... I tried to watch the hidden camera show w/the evil (actress) going off on the grocery clerk w/DS and I made it through all of 10 seconds, with my eyes firmly covered & head averted. Glee just hasn't made it to the DVR yet - though guess that'll be fixed asap.

But I actually wanted to comment about the request for questions. I would like to say I'm with you but this was my one experience: The very new office asst came over to me one morning, before my second cup of coffee (which might explain my reaction), and said her pregnant sister just rec’d 'poor' test results, she was at high risk to have a baby w/DS, was hysterical, and blaming herself because she had HBP and was on bed rest and thought the two were connected. Please excuse the expression, but I was literally dumbstruck and stared at her for a LONG time while trying to figure out what my response SHOULD be. I ended up with an uber-simple “at conception” reassurance and suggested she GOOGLE and, idon’tknow, talk to her doctor? But what struck me most was that my cubicle is isolated in a corner, gets zero passing foot traffic, and she’d only walked past to drop off mail, & never stayed to chat. I have lots of pix of both my kids up but they aren’t poster sized & aren’t really in direct line of sight. Meaning she lingered & checked out my kids’ photos while I was out, or my family is open for discussion at the office? (she’d only been there about a month) Either answer is creepy. I’m more than happy to chat about therapy, what my girl’s latest accomplishments are, etc, but that was disturbing. More disturbing is that I’ve never asked how that pregnancy turned out. Definitely don’t want to know.

Maya said...

Chrystal, I struggle with the faith thing every day. I don't know what I believe sometimes but when Sue's sister said "God doesn't make mistakes," well, I about lost it. It was absolutely beautiful.

I love that show more than I've loved a show in a long while. I hope some people out there learn something from it.