The main reason I am unable to have any conversation about disability issues with people is because of their assumption (spoken or not) that I’m not really disabled, that I don’t have it bad enough to have an opinion.
I’m not saying my life is terrible, but I have spent the last few years settling into deepening layers of disappointment. I know that without any services, I might never be able to do anything but work--literally in the sense of dragging myself out of bed in the morning, going to work, coming home, and collapsing, hopefully getting some food into me on the way. This isn’t the worst problem anyone could have--at least my job is fun. At the same time, I used to want to also work on artistic things; I wish I could spend more time with my friends and make some new ones; I wish I could volunteer; I used to want to have kids someday.
The gradual giving up of these things is not by any stretch of the imagination comparable to someone who will die or be seriously unhappy or ill because of lack of services. It still bothers me sometimes.
I know that if I trundled on down to the Golden Gate Regional Center or whatever, they’d laugh in my face. That bothers me too.
The long list of things I do not find positive or nice or reasonable or anything other than infuriating: telling me how smart I am. Telling me how articulate I am. Telling me I need to acknowledge the difference between myself and people who actually get services--yeah, I do see the difference between us, they get services. That’s a big fucking difference as far as I’m concerned.
So that’s my bad attitude in a nutshell. I wish I could be more compassionate and rational but I got worn out about it pretty early on.
Are you still spending way too much time commuting? So that you're using up too much energy and don't have much left for fun?
ReplyDeleteCan you articulate what specific services you need? Or are you at the mercy of someone else figuring it out for you?
Is there something someone could help you with over the internet?
Or by making phone calls?
There are ways for people to help sometimes - and some of us who might be able to help. I don't have the energy to go out and do volunteer things, but I'm a whiz with the phone and computers.
My commute is like 40 minutes to an hour, I don't think it's a crazy amount of time but it can be tiring. The short answer to your question is no, not really, but I'll explain what services I would need in another post because it's interesting to think what I would ask for if I could have anything I wanted.
DeleteI appreciate your kindness, by the way. Sorry for being kind of brusque about stuff like this.
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