It is not usually my place to rant; I usually try to keep an academic voice. However, I have a blog. As such, I reserve the right to rant. This is one such moment. It is funny how I've spent most my life looking at disability from the outside. By which I mean, my family didn't focus on it, and I was for the most part accepted into a culture that was inclusive of those with disabilities (School, friends, places in town, etc.) Most of my friends weren't disabled.
When I was growing up (whippersnappers!) I knew I had to fight for this thing called Disability Rights, but that was about it. I wasn't prepared for other people's interpretation of what that might mean. As a kid, I simply thought it meant the right not to notice your disability. Now, I see disability rights "advocates" advocating all sorts of things. The right to "accessible apartments", the right to use and not use certain words to describe disability ("Handicapped" is okay in my book, since that's what I grew up with; "disabled" too. Not cripple; implies oppression.) Then, as I grew older, I actually began to see the movement doesn't just have one voice. One demand. It has many, accessibility only being one. The other, if I were to take what I want, and call it "Disability Rights", is inclusion. Right now, I have the constant feeling of fighting; or that I'm a burden to others.
"Everything I need" so "they" say is right here; but only at certain hours. And the other staff can only do certain things. Even then, I feel like a burden sometimes, particularly when aides or staff are angry or tired. (and it makes me mad that they get paid to do so little, sometimes.) What I'm getting at is, I feel burdened by an intense awareness of my disability. An "us vs. them" mentality has rooted itself in my mind, that doesn't serve me as a cultural investigator. I'm still trying to get everyone's story here. I have a feeling that I'm not the only one who feels this way, particularly in the apartment; which is why sometimes I have to take a break and get away from it. Try as I might though, a free-floating anxiety, an edge of quarrelsomeness, has crept into my life that was not there before.
It may be the influence of Friedrich Nietzsche, Foucault et al, in my Comm studies (seriously, conflict theory does help.) It may be that I'm away from my family. It may be that I meet people without disabilities who are now not interested in being friendly, and the only social bond between us is the $$ that I give them. It could be that I feel the need to prove myself. It could be all these things. I just get tired myself of other people's fear of me, and I feel it these days even in the store. I feel in many ways, corralled into a bizarre petting zoo. The disabled people barely come out, and clamor for human interaction. In some ways, I was less fearful when I had lower expectations.