dianadragonfly: (Default)
Go to videos.
Click on Syndrome Silences Children.

I have met and talked to everyone interviewed there, except the kiddo's speech teacher.
Do I feel important?
Oh yeah.
dianadragonfly: (Default)

After the storm, the angelman community started a distribution list to keep families in supplies -- diapers, etc.  One family that we had never talked to before suddenly popped up.  Twins, a mother with CP, etc.  A long list of stuff.

Of course everyone sent them everything they could.

And then I get this email on the listserv:

 we are sorry we're not storm families the packages we can get to the red
cross or sent to the right donation place.  Michael went to the church to
the repent of his sins when they confronted him.  but  we're coming to the
list and telling u all that we did it and we sorry We can send the put the
stuff that got to us back in the mail when i get the money, donate it, or do
a payment plan to pay everyone  back.  Hope everyone can forgive us GBU.


I hate when people don't give because they say things like "How do I know if they need it?"  Those are the same people that try to talk me out of what I think is my better nature.  I HATE it when these people are proved right. 
dianadragonfly: (Default)
I now know how to make posts private from this client, but as soon as I try to make something a private post, I start writing differently.


I need to imagine an audience to take good notes, even though I don't make much sense. Sorry.
It's why LiveJournal works for me in a way that a journal doesn't. Sorry guys. I promise to put notes behind a cut.

I'm at the John Wayne Airport. (hey, little lassy. Or as my great uncle says "JOhn Wayne could take your arm off and spank you with it!" This is my 85? year old great uncle with some severe articulation disorders and has metal disabilities. :))

I went through security.
I had a handcheck for my camera. It alerted for bomb making chemicals. Had a pat down. Girl came running. *sigh* I kinda liked it hehehehe

I'm such a wimp when it comes to issues of race. I realized this while watching the "random" screenings. I saw maybe a dozen people get searched. Me and two others were white (And I was searched for a reason.) I watched one very very well dressed black man get his bag opened by a white guy, who picked up his Bose radio system. "He says it's a music system" he hollers. "How much does it cost" he asked the owner. "About 500 dollars" the man said calmly and evenly.

I imagine, after the sixth or seventh or 500th hundredth time of being searched, I would lose it on someone. Then of course, people could talk about how violent people like me are.

The lady in front of me and I were sharing security stories. She told one that was a little racist ("It was the end of September, right after the bombing, and she said if she saw a single person that looked Mid Eastern, she wouldn't get on."). What do I do? Call her racism?

I tell my story about flying to New York, Thanksgiving 2001. How scared I was. Then I saw someone sitting beside me who looked Arabic and realized that he had to be more scared -- if he stood up to pee, he'd probably be tackled.

Yes, there was an Arabic man on my flight, but it didn't really happen like that. It's sort of my subtle way of saying "He was a human being too."

Last night, at a bar with Dale and Janice, the guy next to us (Paul, now Janice's American husband!) asked us why we were in CA. We told him about the conference and he started talking about whether or not there is a test for Angelman so the pregnancy could be terminated. That makes me cold -- I am all for the right to choose, but that's the worse sort of discrimination. No one says "yes, I think I'm up for this challenge." They have a child they love, then they find out about the disability. The other way around is too terrifying. Even me, with all my experience, would be terrified to find out that my future child, an abstraction, would be severely disabled. When it's a real child, it's the child first, then the disability.

Anyway, the night ended up with me showing him pictures of the angels and how cute they were.

I guess I can argue and try to change people's mind. But instead I just talk about how much better we all are for having angels in our world and leave it. Sometimes stories can do what arguments can't.

Sometimes I hate that I'm not more aggresive in calling out discrimination. But I hope that what I'm doing works eventually. This guy is a nurse, so the next time he sees an Angelman kiddo, he'll think of the conversation, I hope.
dianadragonfly: (Default)
skip -- can't take time to figure out how to post to Uzumeswriting and some of yall (can't imagine who) might find this stuff interesting.

There should be some way to make this private, but who cares. I tend to be much more thourough in my notes when I imagine an audience of more than myself because I always believe that I will remember more than I do. SO, ignore this crap, but post a comment, so I can trick myself into filling out details.
notes )


Jun. 29th, 2005 07:37 pm
dianadragonfly: (Default)
Interview done.
Only looked like 1/2 a dork. with a bad haircut.
Go me.

I sort of have a crush on this doctor now. :)

Next stop: talking to Geoff without being a total dork.

I need to do my paper tonight, but I need a copy of Wallace Steven's "Farewell to Flordia." If anyone finds it full text on the web, I will be your bitch forever!


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