People love to talk about whether or not disabled people can work
but if you can work just fine and your disability is destroying your ability to have a life outside of work (because work takes all your energy and more)
Dead silence. Nobody cares.
File this under, oh you can be active for 4 hours? You can work part-time. Um no, I have to get ready for work (30 min) get to work (15 min) get home from work (15 min) feed myself all day (30 min) maintain myself, my home and my life (15 min, yeah right), which leaves 15 min for work and absolutely nothing else.
This is so accurate, back after I’d relapsed I wanted to try and go in for one class at school so I could still stay in contact with the education system. I let slip during a meeting that I managed to drag myself to that I could manage about 4 hours of activity a week, which the teacher sprang on to mean I was being lazy for just trying to get to 1 hour class. Never matter that it was 30 minutes travel, that I would have to get washed and dressed, that I would probably still need to recover for 3 days from it.
Far too often abled people see the things they do easily as “non activities”, they don’t realise that for many disabled people these things have to be carefully planned and measured, and sometimes they simply can’t be done.
reblog bc the non activities thing seems really important words
I get X number of pain-free steps per day right now, which means that, for large conventions (like SDCC), I need to be in a mobility device. I had someone ask if I used up my steps every day before transferring to the scooter, and look surprised and a little horrified when I said “no, I save them so I can go to the bathroom unassisted.” Like, they had never considered that walking is involved in peeing.
!
Reblogging for the important point that the term “activity” may mean something very different and much broader for a disabled person with a chronic pain or fatigue related condition compared to its meaning for a non disabled person. If you’re tired enough, simply sitting up in a chair rather than lying in bed is an activity that drains energy otherwise usable for other things. A thing I knew from other people with pain and fatigue related conditions, but worth reinforcing for followers who didnt know or had forgotten.
Let me add that what activities I can do as a person with multiple disabilities varies by day. I’ve had days where it was a major success to be able to get out of bed, put a nightgown on, use the bathroom, get a drink, take meds, and get back in bed.
I’ve had days where I’m in bed with a laptop or other electronic device in order to communicate with the rest of my household (well, and the internet), because I simply hurt too much to sit up in my chair, or am simply too exhausted. I’ve spent a week taking sponge baths because I both hurt too much and was too exhausted to take a bath (fibro skin sensitivity has been too high for showers).
Yet, in the same span of weeks I’ve had good days where I was out running errands most of it, spending time with family, doing things that needed to get done – but damned if I can tell anyone in advance what I’m up for because I don’t know until that actual day.
I’m trying to plan a honeymoon and I’m trying to explain to people that I need recovery days after doing stuff. Even “just having a wedding” I imagine will take it out of me and I don’t want to miss out on fun activities but I also don’t want a boring honeymoon.
This may seem like such a non problem to people without insanely sensitive bodies, but as someone that breaks out in a rash and gets migraines from being near any kind of artificial or strong smell I am getting so pissed off with how hard it is to find actually unscented products.
I’ve had to change so many times because products that WERE safe for me to use got a “exciting brand new formula” that they’ve thrown a scent into. It’s usually branded with something about how the scent in question is invigorating, or refreshing, or some other bull to make it sound like it’s good for you .
@skincare brands if you only offer one unscented product for sensitive skin, DON’T FUCKING REMAKE IT BUT WITH SCENTS IN THIS TIME
The shit Bruce has to do to maintain Brucie Wayne literally keeps me up at night. I think about the comic panel where the security guy was like, “check the bathroom, he accidentally locks himself in there sometimes” at least 3 times a day
And on my Bruce Wayne isn’t Batman post I was like, yea he definitely does that shit. Like does he just go about his day, looks at something and goes, “yea, it’s time to be stupid”
Bruce wakes up with a grin on his face. Alfred asks why he’s in such a good mood.
“Well, Alfred,” he says, “it’s been awhile since I’ve done anything entertainingly ditzy.” He closes his eyes, breathes deeply through his nose, and exhales, looking like some parody of a coffee commercial.
1 year ago
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