Old about

One of the few things you can count on in life is change. I will occasionally update my “about” section to reflect that. The old ones will be here, for continuity, accountability, etc.

June 2016 “About”

I used to think I was a cynic. I realize now that I’m better described as a chronically disappointed idealist.

I will write about my health stuff, which causes unstable, variable ability/disability for me. I sometimes don’t like to talk about it to people who don’t have it because invariably, there is a point where I think they are thinking “too much information!”

classic trek kirk, alarmed
omg tmi!

[Image: William Shatner as Captain Kirk sitting on the bridge doing his “alarmed” look: He recoils from whatever he is looking at, and holds his hands up with fingers splayed. His eyes are wide, mouth slightly open. Possibly he is in the middle of saying “nooo!”]

It’s the internalization of this that makes me reluctant even to do that thing people do where they list out all their diagnoses…

Also, people sometimes think because I shared one thing, I want to share everything, answer all their questions, regardless of where or how loudly those questions were asked.

For now, let’s leave it at most of the worst problems I have are related to something called dysautonomia.

Dysautonomia? I don’t even know her! 

(arguably, that’s funnier in a Boston accent)

You can read more about dysautonomia and its manifestations; and another one of my diagnoses, Ehlers-Danlos Syndrome, at the Dysautonomia Support Network.

I used to work in education, in disability services, after leaving my PhD program due to a failure to even consider accommodations for my health issues. Because I studied speech, language, and reading; and because I tended to work in labs with crappy tech support and had to mostly figure shit out myself, I ended up working in assistive technology with a focus on assistive tech and accessible digital materials for people with print disabilities.

These days, I’m pretty limited in how much I can get out and do stuff. I feel compelled to return to activism though, and boy, what fun it is to be a disabled activist. (no, it’s not fun at all, that is sarcasm). I have slowly morphed into a disability activist, although I still personally consider myself to be a disabled activist.

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