Still here

Did you miss me? I missed you. Wish that when MS fucked my R leg, throwing me to a paved yard, I'd done a Douglas Adams by missing the ground. Instead I hit the paving slabs hard and my L leg twisted until the ankle broke.

After a week in hospital with a pot (plaster) on half my leg, I borrowed Watson's laptop. We've worked out how to access my work emails from here in the ward.

Fuck, this hurts. Physical pain and professional pain. I get knocked down but I get up again. Ain't never gonna keep me down.

Paralympian forced to wet herself on train without accessible toilet

I know how it feels to avoid public transport due to disability. Do you?

Once I was refused access to toilets at a train station because there 'should be one on the train'. The toilet onboard was out of action, disability caused bladder urgency, so I hoiked up my smart skirt and peed in the car park. That was when I could still walk; now I avoid trains entirely. So much for independence.

Here's a news report about Paralympian Anne Wafula Strike who wanted a train toilet but didn't get access to it.

If you know how to reach Ms Strike, please send her the link to this post and tell us about it.

[Edit] Here she is. I've now invited her to this blog post.

Sometimes I really don't enjoy being right

I've suspected for some time that I'm autistic. That's on top of all the other neuro stuff going on--partial agenesis of the corpus callosum, abnormal sinuses, abnormal pituitary, Chiari I malformation, hydrocephalus, epilepsy, cerebellar gait ataxia, ocular strabismus.

I don't recall ever being tested for it, and there never seemed to be a good time to bring it up with either of my parents. My mother, a narcissist, has always taken the view that "we were so focused on treating your hydrocephalus, we just never even thought about treating your strabismus/getting you on disability/etc."

We went to see my parents this evening (12/17), to drop off some stuff my inlaws wanted to give them. We chatted for a bit about our former nextdoor neighbors, whose youngest son is autistic. I asked my mother if I'd ever been tested for it.

Bear in mind, my birthdate is 1/23/72. I'll be 45 in a few weeks. I know several autistic ppl who are older than I am. When I asked my mother that question, she looked dumbstruck and actually said, "There was no such diagnosis back then! There was nothing to test you for! There was no such field as neuropsychology or any of that stuff! Trust me, if there was, we'd have tested you!"


I can't say I'm surprised. That falls right under the umbrella of "We were so focused on hydrocephalus, it never occurred to us you had anything else going on at the same time, we trusted the doctors when they told us the patch over your left eye treated the strabismus in your right eye." Uh-huh. It's been common since I was a child to treat strabismus surgically if the patch doesn't work. My entire life I grew up thinking the strabismus only affected my right eye; in my thirties I learned it was in my left as well, and my opthalmologist expressed surprise I'd never had it surgically treated. And now, since I'm nearly 45, the strabismus specialist the opthalmologist referred me to doesn't want to do the surgery, because he thinks that since I've been living with it for so long, doing the surgery now would be a waste of his time. Well, my parents were "so focused on my hydrocephalus" that apparently it was easier for my perfectionist control freak mother to yell at me about my probable autism and executive dysfunction, than actually *do* anything to treat them. I was, and still am, the perfect punching bag.

*That's* why they never had me tested.
  • Current Mood: irritated irritated

UN report into the UK's treatment of people with disabilities

The UN report into the UK's treatment of people with disabilities has been released, and found "that there is reliable evidence that the threshold of grave or systematic violations of the rights of persons with disabilities has been met..."

The UK government is not taking this very seriously.

rydra-wong over at Dreamwidth has an excellent summary and tips on what to do next if you are a UK resident and/or citizen, and I have linked with permission - thank you!


Do you sleep well? We often hear how important it is to sleep enough but not too much. Not always easy to make that happen, is it?

My too-frequent sleep trouble is partly due to chronic disability. It's partly due to age. Sleep trouble gives me a good reason to work as a freelancer, not bound by anybody's rules.