I wrote this in 2005 (with recent edits) and thought it relevant.
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The disabled community had a leader once, Justin Dart Jr. Father of the ADA.. A man I met once when, in 1996, he spoke at a local community college. He was amazing, and when I finally met him I was too awestruck and shy to say much. I was in the prime of my advocacy, constantly fighting for one access issue or another at the college I attended.
You have to know our history before you can even begin to know the mindset. The holocaust, forced sterilization, and various civil rights laws that granted disabled people an equal education or equal access, not to mention mercy killings and assisted suicide. Our movement is far from young, and also far from over.
We need to become an organized minority group, a group that is recognized but also seamlessly integrated into society. While that is still in the (hopefully not-so-distant) future, it needs to start now. I try not to get upset about the scattered state of our activism, but it's difficult to ignore.
I’ve been tempted to quit advocating within our community and just do so on my own, but I can’t turn my back, no matter how much others attack myself and others who have different ideas of how and what we, as a community, need.
I'm proud of being disabled, not ashamed of it. I don't mind people looking at me, but I do mind. It's the Hockenberry principle: Everything you think about me is right. Everything you think is wrong. I want to be seen as an equal, not as the girl in the chair. I'll ask for help when I need it. If you want to know my opinion, I'll tell you. I don't want to walk, don't need to. I just want to be me, whether I'm in a power chair or a hospital bed.
I'm not afraid of speaking my mind, but I also don't need to talk if I have nothing to say. I'm political, liberal, and getting more so the older I get.
Disability culture exists, and it is a big part of my life. We deserve equal rights and equal access. We are a social and political minority group, not "patients" or "clients".
We need to lead on, as Justin Dart has always said.