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01 July 2003

 
The update on my situation is Wells Fargo sent the fax accepting the 6 grand, I paid it, so they are off my back. The "10,000 Dollar Guy" is SUPPOSED to be making an offer in writing today for $13,500 for the trailer. I will accept it if he does, then a million things can go wrong after that, I guess. I couldn't make last week's doctor/family meeting at my father's nursing home -- called his wife and said I felt too terrible to go. That is a huge step for, I want to tell you! Just thinking before I sacrifice myself -- wow! Anyway, she said it was nothing -- half an hour of nothing much. He is gaining in strength and is making more sense, able to eat solids, hold his drink glass, etc. Back pretty much to pre-operation levels. At some point he will go back to the Alzheimer's home -- I don't know what the criteria are for that.
I'm working on the graphics part of the Elizabeth story. I took her to lunch on Sunday before we went shopping, and I made her read the story and point out errors. I told her to email Tiff about things that are wrong. She stumbled over the word "stubborn," and I told her she should know that one! She laughed. I was embarrassed by part of it that I don't think is quite right:

"I am remarkable because with all these problems I am happy and living the life I want to live. I guess this alone would not be so remarkable, except that I have Down’s Syndrome. I know what Down’s Syndrome means. I know that other people know that I am Downs, but that doesn’t matter much. Downs makes some things hard, but I am living a good and independent life. I know people value me for my good spirit. I like it that I want to take care of myself and that I am making that happen. I even have my own telephone number in the telephone book. I found it in there and was so excited I called my sister to tell her to look. I can cook for myself. I like making fish sticks and instant mashed potatoes. I even make vegetables."

I think Americans say "Down Syndrome," but aside from that, the paragraph is perplexing to me. I think my unease centres on "I have Down's Syndrome," and " I know that other people know that I am Downs, but that doesn’t matter much. " I don't know if "have" is the right word. And the other sentence seems... I don't know... not what Elizabeth and I ever thought, I guess. Maybe "Other people can see I am Down's Syndrome, and if they don't like it that's their freakin' problem." Uh... maybe not. I think the original sounds like we are supposed to think there's something not-so-good about being Down's Syndrome... or that we are supposed to care about what other people think, ...or? It's very much like saying you are a particular nationality -- as many people will count that as a plus as will count it at a minus. Maybe it should say, "I am amazing because with all these problems I am happy and living the life I want to live. I guess this alone would not be so amazing, except that I am a Down’s Syndrome woman. I am an amazing woman! I know what Down’s Syndrome means. When I see other Down's Syndrome people I always say, "He's Down's, like me!" Down's makes some things hard, but I am living a good and independent life. I know people value me for my good spirit. I like it that I want to take care of myself and that I am making that happen. I even have my own telephone number in the telephone book. I found it in there and was so excited I called my sister to tell her to look. I can cook for myself. I like making fish sticks and instant mashed potatoes. I even make vegetables."
I changed "remarkable" to "amazing" because Elizabeth is more familiar with that word, and the "I am an amazing woman!" is a direct quote. What do you think?
Other people --of course--- know she is Down's -- and some people are cruel -- intentionally or not. Children stare -- sometimes, if they have no manners. And adults, too, if THEY have no manners. People are condescending -- but think they are being "nice." E just hates that. Other people seem to not see her -- they address their words to someone else, "Does she want to try it?" or they ignore her completely/act like she is a child. Very annoying. After E moved, ______ called me up and said, "Is __________ not a very nice guy? He went and got beers and gave one to everyone EXCEPT ELIZABETH, like she was invisible. And when he wanted to take a load, I thought you were totally righteous for saying, `You need to take Elizabeth. It's HER PLACE.`" I don't think that makes him a bad guy -- just an insensitive one. Unfortunately, most people are quite insensitive -- at least he was being helpful. There's almost always bad mixed in with the good -- I see it with my own situation. So you see -- she has to struggle bravely on, and we don't know the extent of the cruelties. I am concerned, too, that everyone equates being nice with giving her food, like ice cream. They need to analyse their own motivations for that. Elizabeth can't resist, I know, but if she wasn't faced with that it would be easier.

posted by - 10:00 AM

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