Theme
3:43pm
July 15, 2015
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.
!
I constantly have to remind people of things like…
Okay so I suddenly gained a bunch of skills recently. Like they popped in out of nowhere for the first time since I became an adult, really. Like I’ve learned all kinds of emotional coping skills and social skills as an adult, but until now practical skills have all been losing not gaining. And suddenly after getting treated for adrenal insufficiency and myasthenia gravis (which I’ve had at least one of, not sure which, since I was probably 18 or so, minimum, from what we can tell) I’m gaining some practical skills.
Like I can clean up cat puke for the first time in my life.
But I still can rarely clean the litter box. Like it’s something I can do if I really work hard at it and someone starts me off, but it’s not something I can do consistently very often at all.
Someone approached me and told me basically “Since you’re learning all these skills you should do MORE. So maybe we should have staff prompting you to clean the litter box.”
And was completely shocked when I blew up at her.
I calmed down enough to explain.
And one of the many reasons I was pissed off was…
Despite the amount of services I get, there’s a large section of the day that I spend alone. I can have someone come over during most of that time, if I’m really really stuck, but that’s a last resort, it’s not something I can do every night without there being problems. (I’m working on getting a roommate but I’m not there yet.)
And in all that time, I need all the spoons I can get so that I can go to the bathroom and back, self-administer medications, manage my feeding tube, and do all the other things that people don’t think about at all.
That means that if an activity is going to pointlessly lose me spoons, then that is not an activity I should be doing.
Like, if I get a lot out of something? Like crocheting? Then it’s okay, because it improves my quality of life. Everyone should have something like that they can do – but a lot of us don’t, because loss of spoons means we lose the ability to do things we like as much as things we don’t like.
(This is what I try to explain every time someone makes it sound like my six years in bed were some kind of frigging vacation from life. If you’re sick enough to be in bed for that long, then you’re sick enough to lose the ability to do things you like as much as things you don’t like doing. It is so completely not the same thing as staying home from school with a (real or fake) stomachache or something for a few days and feeling good that you got the time off. After enough time in bed, you want to go to school or work or something. In fact I took online classes to keep from losing my mind, literally. And I couldn’t finish some of those.)
But like, pointlessly asking me to clean the litter box? Not going to happen. There are people who are literally paid money to do that for me. They’re not paid as much money as I would want to pay them if I were in charge of their funding, but they’re paid in money and pretty good healthcare benefits and stuff like that. There is no danger that if I don’t scoop the catbox, my cat will suffer because of it. Because there are people willing, able, and even paid to do that.
Which means, having me do that? Simply takes spoons away that I could be using for something else. Like all that long stretch of time when I have to manage things on my own. Things that other people think of as “nothing”, but that take actual effort on my part. For instance, any time I cross a boundary line – like a doorway, or getting in or out of bed, sitting on or off the toilet or a chair – it eats spoons like nobody’s business. I can spend hours in bed working up the energy just to cross the bed-to-floor boundary so that I can go to the bathroom. Once I’m past a boundary line, everything is relatively easy, but every boundary line takes energy out of me. And that’s true for mental boundaries as well (harder to explain but same basic reasons – autistic catatonia).
So, yeah. Things that people do that they think don’t take any effort at all, simply take effort that they don’t notice because they have so much energy that they have the luxury of not noticing how much work they put into doing things. I don’t have enough energy, even with treatment, to be able to spare the spoons on things that don’t directly improve my quality of life and that can’t be done for me somehow.
Oh another thing that confuses people (and this happens with a lot of cognitively disabled people in general): The more you help me, the more independent I’m able to be.
That’s because all the things I’m unable to do are like thousands of straws on my back (thanks Donna Williams for the straws-on-a-camel’s-back analogy), and each thing someone does for me takes a straw off my back (or spares me the spoons, to use another common analogy), which then allows me to stand up straighter and do more things for myself.
Also, I will pretty much never refrain from doing something if I could do it myself without any effort or dangerous spoon loss. Why? Because when I can actually do something, it’s fifty billion times easier to just do it than to explain to you what I want done and how I want it done and how to do it. Even asking for help takes spoons I don’t always have. (Which sometimes actually results in me losing spoons doing things for myself because I’d lose even more spoons explaining how to do them, which is a sucky situation that happens more often than I’d like.)
So… yeah. All of this and more.
Oh, the difference between cat puke and the catbox?
Cat puke generally happens in a spot that’s in my way, and advertises its in-my-way-ness by sitting there being disgusting right in the middle of the path, or (as Fey tries really hard to do) near the drain in the bathroom, or wherever. It’s fairly easy for me to throw a paper towel over it, which is what I learned to do first, and then from there was able to learn to use the paper towel to scrub it up and spray stuff on it and then scrub some more. The entire situation prompts me to respond to it.
The catbox is out of the way and requires crossing at least two boundary lines. It does not stand in my way. It sits in a corner of the bathroom. Cleaning it requires picking gross stuff up and carrying it around and then operating the toilet, all the while avoiding getting cat litter everywhere. All of these things require crossing more boundary lines than cleaning cat puke. And this is all if the cat is actually using the catbox as directed, which is not a safe assumption (she likes to, instead of burying her crap, tear off a huge chunk of the litter box liner and then pull it over the crap and possibly pee or crap on top of it again, so it’s also logistically hard to get in there and pick it up without doing some gymnastics).
And, as I said, there are people who will gladly clean the litter box and are paid to do so, so it’s not like I or my cat are suffering because I can’t do it consistently. (When I can do it with minimal consequences, I do do it, of course. See above about doing things vs. asking people to do things.)
Whereas if I don’t clean up the cat puke, it’s in the way, it reeks, and the cat is in danger of eating it and getting sick again.
So one of these things requires fewer skills to do, and is more important for me to be able to do, and unsurprisingly that’s the one I learned to do pretty consistently. This, really, should not be surprising.
Also? When someone learns practical skills for the first time in their adult life?
Congratulate them.
But do not frigging tell them “Oh you just learned some skills for the first time ever? Here’s some more skills you need to learn. They just happen to be the skills that would be more convenient for me if you happened to learn them. What, you don’t want to learn them? Don’t you want to be independent? What’s wrong with you?”
I guarantee that somewhere inside they’ll want to trout-slap you. If you don’t understand why, read the above and think about it for awhile, and maybe learn to be less condescending. (The “don’t you want to be independent?” as a code word for “don’t you want to learn skills that would make my life more convenient?” thing is incredibly condescending and fairly manipulative as well.)
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