That’s the message from, as she described herself, our newest ancestor. The disability community lost Alice Wong this weekend and while I cannot profess to have known her or even followed her closely, I know her impact is massive and she will be greatly missed.
If you’ve been around here at all, you’ll have noticed that I don’t just write blog posts when I have answers. Answers aren’t bad by any means, but I find my most meaningful steps in understanding happen via questions. Why am I asking that question? Who is upset at me for asking that question? And so many variables like those. As I’ve said previously, exploring thoughts and where they come from and how they change and grow over time is interesting and valuable.
I do often feel the bastards have ground me down, though.
Despite trying (and trying and trying), I receive no kind of disability supports. While supports and accomodations cannot remove my disabilities (not all disabilities are “fixable” with supports and/or accommodations), receiving nothing is the system telling me I’m not worthy of a full life. The system tells me disabling chronic illness isn’t a real disability.
I’m always left feeling like I’m the wrong kind of disabled.
So what I’m left with are questions.
- Why is a human rights model of disability seen as radical?
- Why is it my fault that human rights are radical, when it is governments who fail to deliver on the rights?
- Why don’t people with a disability get a full life (within their choice & abilities & capacity) – work, leisure, freedom?
- Why don’t people with a disability get appropriate supports?
- Why don’t people with a disability get genuine career opportunities?
- Why do I need to make sure I ask these questions in the palatable way?
Why would some people view these questions as radical, rather than reasonable?
I can only assume it’s because the majority of these are systemic failures where it’s more convenient to pass these off as individual failures. I mean, if we tried, like really tried this time just for them, would we even be disabled? That’s how it feels to ask these questions; that my validity will be immediately attacked to avoid asking those responsible to … be responsible.
I think one of the big problems is that people want to feel like they’re inclusive, until they have to be inclusive.
Some days I don’t know how to not let the bastards grind me down. The extra workload that exist with being an unsupported, wrong type of disabled person often feels immense.
