The snooze alarm had been going off for half an hour before it finally penetrated my brain enough to make me wonder what time it was. I peered blearily at the alarm clock with one eye, an act which suddenly made both eyes open wide so fast I may have sprained an eyelid. It was half an hour after my attendant usually comes to get me up and when I called the staff lounge to inquire what happened, I was passed on to the manager, who told me that "there had been a miscommunication" which meant that "a shift hadn't been filled" and notifying me that I would be getting up just in time to arrive at my desk around noon. Several hours later than I normally do.
Just. Fabulous.
Living with a disability that requires the participation of others to get through your day is a finely tuned and precariously balanced machine. Hospital personnel can decide that today, you don't get to use your wheelchair, parallel transit can go on strike and decide that you don't get to go anywhere. And deciding to not fix a screw-up in scheduling staff can result in you languishing in bed, twitching madly and building up quite the appetite (and need to go to the washroom) while they fit you in somewhere else. Hours after your regular morning booking.
This is one of the factors that contribute to the concept called Disability Time, meaning that everything takes way longer to accomplish than it does for able-bodied people. This is also one of the factors why unemployment is rife in the disabled community (yes, I'll be ranting about that again). First, you have to persuade somebody to hire you - something that's a challenge at the best of times, what with barriers to education preventing people with disabilities from getting a proper high school diploma (because the barriers start early), which blocks access to higher education and if you spend too long thinking about that particular systemic discrimination, it makes you foam at the mouth a little. After that, you need to persuade somebody to give your job so you can get experience and start building your resume, but even if you're qualified, there is that step by the front door and once inside the door, without legislation mandating that a workforce is representative of the community, you're pretty much out of luck. Every step of the way, more people are siphoned off and by the time a tiny little percentage manages to get a job, then we can't get to work because some idiot decided to not fill a shift.
When the machine works, it works pretty well and people like me are out there, doing our thing, just like the rest of you. The extra time and effort it takes to do that doesn't show and that's the way it's supposed to be. But all it takes is one little hiccup and the whole house of cards collapses, my day, my life hijacked by someone else's agenda.
I'm lucky that my work is at my desk in my bedroom - and I spent much of the time while waiting for an attendant pondering the irony of so near, yet so far - and doesn't require WheelTrans to get to. Because if I had the kind of job that needs to be done outside of my home, I would've missed my ride and therefore missed work. I'm also lucky that my job is flexible so that whatever I didn’t get to yesterday, I can make up for today and tomorrow, because if it wasn't, I would've missed work. Not because I was sick, not because I had an ill dependent, not because I was on vacation. Because I couldn't get out of bed. Yet another reason why they estimate that un/under employment rates of people with disabilities is somewhere around 85%.
One thing did brighten my day significantly. When I went to get the mail, there was a package among the boring bills and flyers. A while back, when I whined about my hands being cold and having difficulty using my computer while wearing mittens, Karin volunteered to make me a little something for that and lo and behold, inside the package, there they were. Perfect wrist warmers from the softest, most beautiful hand-dyed (by her) perfect colour (which is a deeper red than what shows up in this picture – taking pictures of your own hand is a tad complicated and apparently affects the colour). Just in time for winter returning today. Thanks Karin!
I love knitters.
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