I can't respond to this properly because I'm at work and have no brain and little time. But It's something I've thought about quite a bit. I like your insights. I wish I could get the things I've thought to cohere right now, but I can't.
Two things, though, that do leap to mind. The first is the recollection of the first counselor position I ever worked. I was working with adolescent girls who were multiply handicapped - all of them were blind, most had impaired mobility, and most were severely cognitively impaired as well. Only a few were able (or willing, I suppose) to communicate verbally. The first day was overwhelming. I just rolled with everything. By the end of the first week, I felt right at home. Later, someone asked me about the work I was doing and I described it, and she said, "That must be really depressing." I surprised myself as well as her with how immediately and completely I disagreed. I told her, without thinking about it, "Not after the first two days. It's sad sometimes, but that's not the same thing." Later, thinking about the conversation, I concluded that 'depressing' is only a viable reaction if you're an outsider. Once you're involved, it can be sad, frustrating, infuriating, funny, and more, but not depressing. (That was /my/ feeling, and it was about working with these kids, not about being one, or being a family member. I would imagine there would be periods of depression, in either of those cases, for most people. But that's a really different kind of thing - being personally depressed because of conditions of your life - from being depressed /about/ other people. That's an outsider thing.
The other is...well, very trivial. But as you know, my hand changed shape in this past year. My left thumb is, essentially, mildly deformed. Now that's a wildly minor kind of deformity compared to most of what's been discussed here, and I'm not trying to, I don't know, claim membership to the exclusive club or something. The social problems simply don't apply - people don't notice the thumb unless and until I bring it to their attention. I imagine children might, but even they don't always. But the adjustment period for me, in trying to come to terms with my body looking different from how it had always looked - looking *worse*, looking *wrong*, and having no prospect of it ever going back to "normal" has been a very strange one for me. I still have difficulty with it from time to time. So I think about what it's like for anyone whose body changes significantly, in a way which says DAMAGE every time you look at it. It's very disturbing. I wonder about what would help. It's interesting.
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Date: 2005-12-16 10:50 pm (UTC)Two things, though, that do leap to mind. The first is the recollection of the first counselor position I ever worked. I was working with adolescent girls who were multiply handicapped - all of them were blind, most had impaired mobility, and most were severely cognitively impaired as well. Only a few were able (or willing, I suppose) to communicate verbally. The first day was overwhelming. I just rolled with everything. By the end of the first week, I felt right at home. Later, someone asked me about the work I was doing and I described it, and she said, "That must be really depressing." I surprised myself as well as her with how immediately and completely I disagreed. I told her, without thinking about it, "Not after the first two days. It's sad sometimes, but that's not the same thing." Later, thinking about the conversation, I concluded that 'depressing' is only a viable reaction if you're an outsider. Once you're involved, it can be sad, frustrating, infuriating, funny, and more, but not depressing. (That was /my/ feeling, and it was about working with these kids, not about being one, or being a family member. I would imagine there would be periods of depression, in either of those cases, for most people. But that's a really different kind of thing - being personally depressed because of conditions of your life - from being depressed /about/ other people. That's an outsider thing.
The other is...well, very trivial. But as you know, my hand changed shape in this past year. My left thumb is, essentially, mildly deformed. Now that's a wildly minor kind of deformity compared to most of what's been discussed here, and I'm not trying to, I don't know, claim membership to the exclusive club or something. The social problems simply don't apply - people don't notice the thumb unless and until I bring it to their attention. I imagine children might, but even they don't always. But the adjustment period for me, in trying to come to terms with my body looking different from how it had always looked - looking *worse*, looking *wrong*, and having no prospect of it ever going back to "normal" has been a very strange one for me. I still have difficulty with it from time to time. So I think about what it's like for anyone whose body changes significantly, in a way which says DAMAGE every time you look at it. It's very disturbing. I wonder about what would help. It's interesting.