This entry is in response to a comment that was left on my blog earlier in the week. It is not my intention to have a go at Cindy for leaving it, it's just what reading that comment made me think. And I should probably admit that I did find it somewhat frustrating to read it. We've e-mailed about this and the first part of this entry comes from that e-mail. I've written a lot about other types of communication too.
In the comment she wrote
"....I too, am handicapped, (I hate that word!)..."
As disabled people, we talk about how we don't like these terms like "handicapped" or "retard" and how we wish society would see them for what they are (offensive, insulting, etc) and replace them with other more appropriate terms. But when we use them for ourselves we make others think it's OK. Because people will remember the word and give it power. They won't necessarily remember that you stated a hatred of the word at the same time as using it just that you used it.
The first step in any battle is to have respect for ourselves. If you hate the term refuse to use it. And if you've got the nerve/confidence, correct others that use it when they say "Emma is..." say no actually, i'm disabled or whatever term you prefer. I tend to do that more than I pick people up on using in appropriate language when not refering to me
Obviously language is very subjective and different terms have different means to various people. My use of the term crip and cripple is one of those, I'm fine with it in fact I quite like it as it gets attention and a reaction often. But many, many people have either tried to convince me that I'm NOT a cripple because of it's negative image or others have a go at me because I use it. But it works for me.
Another thing about language/communication is how hard it is or rather can be. I've been known to get really annoyed or frustrated with a carer (usually after they've left) when I noticed they've not done something.
Because to me it's so obvious that as a part of x I want them to do y. But often when I stop and think about it, I haven't specifically told them that I want them to do it. To me it follows that if I ask someone to put dirty bedding straight in the machine I want them to put it on as well (and it literally took me hours to realise they hadn't) but just because it's obvious to me doesn't mean it's obvious to them. Or communications fail and I then realise that I'm expecting them to remember what my norm in a situation is - not always easy particularly when I'm not their only client (for the first four years I had carers, they had most had two or three other carees as well so likes and dislikes are easily remembered).
I still think (and find it frustrating) that some things should be so common sense. I'm thinking specifically here of the carer who a long time ago emptied the bin, put the bag outside and didn't tie it up. Made a big mess I had to get my parents to clean up (I believe my mum's exact words were "I'll send your Dad." they usually are).
So I have to walk a fine line between telling them enough to get what I want done both when and how I want it doing and telling them in too much detail meaning they get frustrated and annoyed. I know at times I've gone too far and had them respond "I'm not stupid" or some similar. But the trouble is everyone is different and when do you know just what you need to do. I tend to react to "i'm not stupid" like comments by replying that some carers don't realise I need X so I wanted to be sure.
And don't get me started on written communication... text lacks so many of the subtle non verbal clues we take context and meaning from it's hard to know how to react at times. Hence the complete and utter over the top from my toys out of the pram e-mail I sent earlier in the week - that got a reaction and a response. Whereas when I calmly e-mailed about the same issue before, nothing happened.