Holding the Bowl

andreashettle:

mmmyoursquid:

seananmcguire:

mmmyoursquid:

chameleonchild:

eenymeenypia:

mmmyoursquid:

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.