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thoughts about autonomy


On MOL, Ken writes:




I know that many people with upper extremity disabilities have their equivalents of crawling - things that they can do, but try not to do when anyone is watching - and I wonder are there equivalents for those who are visually impaired? I wonder also if being blind protects you to some degree from worrying as much about people's reactions to your disability.




Linda responded and explained a bit about her physical disabilities. Here's my response:



If I thought about it for a while, I know there are equivalents. I don't think blindness protects me from the attitudes of others. Maybe if no one ever spoke of these attitudes it would. But people communicate attitudes in a lot of different ways, and often I feel the attitudes even if no one is communicating them. I've been taught to anticipate them, always to be aware of how I appear or am perceived by others. In many cases I actually feel horribly visible, even when no one is likely to be watching me. I've become so self-conscious that I can be in a room all by myself with no windows and still feel shame. This was even more so when I was without my vision before one of my surgeries. I know where a lot of this comes from, but I don't know how to get rid of it other than to endure the shame and do it.



For me autonomy often means using those strategies other people would think are too complicated or would disapprove. I have no choice when those people aren't helping me and their lack of help keeps me from getting done what I need or want to get done. To add to the discussion a bit, I'm developing the attitude that it should be my decision when to use these techniques, and it shouldn't only be because the situation is a life-and-death situation or some similar scenario. To stick to Linda's example, if she wanted to get a book to read and the book was upstairs, it should be ok for her to decide that getting the book is worth expending the effort. I might not think so, but is Linda allowed to want something badly enough that she's willing to spend that much energy to get it ... or are Linda's desires subject to my approval?



One equivalent for me is taking a cab. I'm not necessarily ashamed of it, but people discourage me from doing it because of the expense. Sometimes they grudgingly fill in and take me where I want to go. Sometimes they take me to what they assume is an acceptable (more convenient for them) alternative. (Don't I have the right to choose this grocery store over that one for my own reasons whether or not they make sense to someone else?) Sometimes they just let me know how silly it is to waste money on taking a cab because it's not a necessity--especially when I live on such a low income.



This is a major source of depression for me right now. I feel like a prisoner in my own home, and my home is not and cannot be a place of comfort for me if it is my prison. Without getting out and spending the money (which I don't have), the only way I know to transform my home is to make it into a place of welcome for others... It would be a tremendous comfort for me to know that someone else had felt welcome here emotionally. I'll go off on that tangent another time. I'm tired and probably shouldn't go any farther tonight. I think it's enough to know that I have more rambling to do.

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Sarah Blake LaRose
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