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5:36pm November 13, 2011
fryfan20: was just watching week 4 of April in, in treatment and found it pretty hard to watch. not because of the cancer but because of her brother who is autistic. she talks about how hard it is to take care of him and how he keeps everyone around from having a life, how he destroyed their life’s by just being himself and I can’t help but to wonder, did I hurt those I love just by being me, by being so difficult ? did I destroy their life’s ? I don’t know if this is any help at all but I long ago wrote something called What People Are “Supposed To” Be Doing about this exact topic. If it’s tl;dr for you, the gist is that a lot of people seem to believe that “having a life” means having one particular sort of life. Where disabled people just happen not to exist, to be keeping people from “having a real childhood” or “having a life” or whatever. And that this seems wrong to me, given that the basic assumption is that there’s no place for us in the world. I really really hate to think how many people are influenced by things like that into believing that our only impact on other people’s lives is to take away from them the life they’re “supposed to” have. I went through a period like that myself, where a friend kept telling me that at the age we were at, people were supposed to be carefree and having fun finding out who we are. Not taking care of people like me. It really hurt for a number of years, knowing that’s how she had thought of me, if only for a short period. I think one advantage I have in getting over that, though, is that practically everyone in my family is disabled in one way or another. So I came to realize that if it were true that disabled people kept other people from having real childhoods, real lives, etc., then we must all be preventing each other from having those things. And I realized it wasn’t true (I’d never once thought that of my disabled/chronically ill parents, my autistic brother, etc.), so maybe the whole idea isn’t true either, even if some people believe it really strongly. Really the whole idea of “having a life” that has to happen in a certain particular way is a very recent invention, and only holds true in a small and well-off part of the world. Everyone else has to make do with what we’ve got. Anyway I hope you feel better, I know it was really horrible when I went through that period of thinking I was just getting in the way of the lives of everyone around me.

fryfan20:

was just watching week 4 of April in, in treatment and found it pretty hard to watch. not because of the cancer but because of her brother who is autistic. she talks about how hard it is to take care of him and how he keeps everyone around from having a life, how he destroyed their life’s by just being himself and I can’t help but to wonder, did I hurt those I love just by being me, by being so difficult ? did I destroy their life’s ?

I don’t know if this is any help at all but I long ago wrote something called What People Are “Supposed To” Be Doing about this exact topic. If it’s tl;dr for you, the gist is that a lot of people seem to believe that “having a life” means having one particular sort of life. Where disabled people just happen not to exist, to be keeping people from “having a real childhood” or “having a life” or whatever. And that this seems wrong to me, given that the basic assumption is that there’s no place for us in the world.

I really really hate to think how many people are influenced by things like that into believing that our only impact on other people’s lives is to take away from them the life they’re “supposed to” have. I went through a period like that myself, where a friend kept telling me that at the age we were at, people were supposed to be carefree and having fun finding out who we are. Not taking care of people like me. It really hurt for a number of years, knowing that’s how she had thought of me, if only for a short period.

I think one advantage I have in getting over that, though, is that practically everyone in my family is disabled in one way or another. So I came to realize that if it were true that disabled people kept other people from having real childhoods, real lives, etc., then we must all be preventing each other from having those things. And I realized it wasn’t true (I’d never once thought that of my disabled/chronically ill parents, my autistic brother, etc.), so maybe the whole idea isn’t true either, even if some people believe it really strongly. Really the whole idea of “having a life” that has to happen in a certain particular way is a very recent invention, and only holds true in a small and well-off part of the world. Everyone else has to make do with what we’ve got.

Anyway I hope you feel better, I know it was really horrible when I went through that period of thinking I was just getting in the way of the lives of everyone around me.