For all the shit that’s going on with Me Before You, and the assisted suicide and the general message that disabled people are happier killing themselves, Finding Dory had the exact opposite message.
Dory learns to grapple with her short term memory loss. She’s never cured of it, it never goes away, but she discovers “her own little way of remembering” in the words of her mom.
She realizes that she doesn’t have to remember exactly what happened, as long as she can walk herself through why she’s there. “What would Dory do” becomes her mantra and helps her navigate.
Again and again the film reiterates that Dory can’t do certain things alone, and that’s okay. She recognizes it, other characters don’t force her to do anything she isn’t comfortable with, and even say that in those exact words.
Even a near sighted whale shark and an echolocating beluga whale discover the unique ways they can help each other, without “fixing” destiny’s eye sight.
And at the end of the film, without spoiling the general plot, Marlin realizes that even with Dory’s disability, she’s able to do some things on her own. Maybe she can’t ever live on her own, and maybe she’ll always need someone around to help her, but it’s okay. She’s her own fish first.
One of the most frustrating things is that nobody teaches you how to be disabled.
Everybody teaches you how to try to get better, how to blend in, how to be as normal as possible and “lead a fulfilling life.”
But nobody says the important shit.
There is no
“Hey, fuck, you’re in a wheelchair and that just sucks balls, but you know what? You gotta fucking do it so here’s some things to make life easier.”
Or “Here’s your new cane! Congrats! Here’s how you use it. Stairs might fuck you up at first but let me show you how to make it easier.”
Or “Hey, you’re autistic, that’s cool. Let me know how I can help as your friend/family. I care.”
No one teaches you, actually teaches you about how to deal with daily life moving forward.
Once you’re disabled, once people know or once you’re injured or sick or diagnosed or whatever,
it’s all about pushing to get out of the chair, to stop using the cane, to blend in.
There is no help to accept your disability and move on with life working with it.
It’s always a push to work against it in every way possible and that makes it even more exhausting.
God, this! It’s always about trying to ignoring and deny our disability or giving up on us completely.
It’s like disability is the ultimate failure, even if they won’t say it.
No one tells you how to make accommodations or what accessibility problems you’ll face.
Disabled people can have quality lives.
But our lives are going to be different from abled people’s.
Our health is going to be different. And so should our healthcare.
But instead we are given the same treatment tailored to abled people, and that means it is going to fail us in so many ways.
This is also why “cure” culture bothers me.
Because if there’s no cure, doctors give up. It’s like no cure = no available treatment, because why try if we can’t get you back to abled standards?
[caps removed and spaces added for accessibility]
So. Much. This.
fuck this is so relatable right now
I want to make a blog about these things, like finding accessible places, using canes, talking to doctors, ease of dressing, even the emotional stuff and how to deal with that. There’s so little for us spoonies out there in relation to what the hell to do, how to just live with our disability or illness. Would anyone read it?
This post hurts because it’s so true.
This is why the online spoonie/disability community is so important. I was particularly lucky, because by the time I got sick, my older sister had already been sick for some years (EDS, both us), and so she was able to talk me thru a lot of stuff that she had had to learn by trial and error. How to talk to doctors when my meds weren’t doing enough. How to buy a cane. How to enquire about getting a parking placard. How to get a hip back in socket. Etc etc etc.
I’ve also found tons of good advice here on tumblr, or been able to go to blogs like @spooniestrong to ask others for help. It would be amazing to have a blog dedicated just to tricks of the trade, but that might also be a lot of work for a single person/few people. Maybe there’s a tag to talk about this stuff specifically? (Or we could make one if there isn’t already)
So I know about spoon theory but it never really made sense to me. Why spoons? What does it mean? I get the concept but the metaphor doesn’t make much sense to me. Ancient warfare does though!
Like a general in the time of Alexander the Great, you start out your day (campaign) with so many spears (soldiers), let’s say your army is 20,000 spears strong.
As you progress through your day you lose these spears (casualties, attrition, desertion, etc.) Each task (battle) can reduce your spears, and so can just getting through the day (marching).
You need to make strategic decisions about your day, one task may seem important or vital but could cost too many spears damaging your campaign and progress, leading to defeat elsewhere.
When you’re low on spears, you may still attempt a hard task, but pushing yourself to do this could be a bad idea. If you do this, you may become like Pyrrhys of Epirus, winning the battle (task) but with such heavy losses it is only a Pyrrhic victory leading to later problems (problems like a Roman invasion).
“But you CAN do it if you want to”
“Keep talking like that and you will be kissing the boot of Rome in no time”
When you feel you need to, you can rest, and celebrate the victories of the day; gaining new recruits (replenishing your spears) and keeping morale high.
So yeah! That’s Spear Theory! You are the commander of your own life, and nobody knows how to use your army better than you. Go forth and conquer.
May Athena guide you to victory!
“Keep talking like that and you will be kissing the boot of Rome in no time” XD
– Make sure the place where you’re going is accessible! Your date might opt to use a wheelchair that day, and if they’re using a cane, best to make sure there aren’t a silly number of stairs involved in whatever date you’re considering.
– Call ahead to the place to see if wheelchairs are available to borrow if you’re going somewhere that involves a lot of walking and standing around, like a museum.
– If your date is using a cane, they likely only have one arm to hold things. Consider bringing their food/drinks to the table along with yours– let them claim a booth while you get the food!
– Be prepared and willing to be someone’s physical support sometimes, especially if your date is having a rough leg day.
– Be prepared for a Plan B Date: it’s so awesome to have a back-up plan for the date if the day comes around and your person is spoonless. Believe me, it’ll mean a lot.
i just really want to add some from my own experience:
ask yourself, really ask yourself if you’re fine with plans being cancelled at the last second, cancelled mid-event, and for plans to often be “come over to my house and lump on the couch with me” – if you aren’t? don’t date somebody with chronic pain/fatigue. especially if you will take that sort of thing personally and/or hold it against the person. if you date me, you date my disabilities. i have to deal with them, so do you.
if you are grocery shopping with someone who uses a mobility aid like a cane or rollator, and that person is pushing the cart? DO. NOT. MOVE. THE CART. while they are using the cart, it is taking the place of their normal mobility aid and moving it is like moving their leg. DON’T DO IT. i have fallen in grocery stores more times than i want to think about due to an ex who couldn’t get it through his head that THIS IS MY CANE RIGHT NOW and would just grab the basket and drag it somewhere.
if your date says “no, it’s fine, i’ve got it” when you try to do something? let them. just let them. my disabilities takes so much away from me, the things i can actually do are things i am proud of. it makes me feel better to be able to do things for myself. i detest nothing more than an able-bodied person INSISTING on doing something that i can do myself, even though i’ve said multiple times that i’d prefer to do it myself. it says volumes on what that person really thinks of my abilities as a functional human, none of them positive. i get that you’re trying to help, but i promise, taking away what autonomy we do have? not helpful.
learn to tell your date beforehand what the date will entail. learn to look for the things your date would need to know. i had an ex that never factored in things like “walking half a mile” or “it’s a three story walkup with no elevator” because those things were no problem for him. i, on the other hand, would arrive at the destination crying from pain and unable to enjoy a damn thing – and exhausted in advance by knowing i’d have to repeat the journey just to get back home. don’t be afraid to ask your date what things they need to have taken into consideration. ask what accessibility options are necessary for them when it comes to cane/wheelchair access, how much access there is to regular seating, how much walking will happen, how many stairs there are.
if you go to a movie and the only parking is way in the back, ask if they’d rather you drop them up front while you get a spot – because sometimes traversing a large parking lot is the difference between watching a movie and sleeping through it, or being too distracted by pain to follow it.
by and large, we know our limitations and it means the world to have someone say “hey i want to take you to this exhibit, i think you’d really enjoy it! there’s several stairs to the entrance and the wheelchair ramp is kind of obnoxiously far away, so it’s either a bunch of walking or deal with stairs to get in there, but once you’re inside there’s a lot of comfortable benches and not a whole lot of walking.” because they thought about how you navigate the environment.
if your date is using a rollator or wheelchair, make sure your car (or whatever form of transportation you are going to be using) has space to put it. don’t ask me out to the renaissance faire and then show up in a CRX and look confused when i say my rollator can’t go in that so i’ve gotta stay home.
BE. PATIENT. this shit is unpleasant enough for us already, the last thing any of us need in our lives is another able-bodied asshole making us feel like burdens. we can’t do everything as quickly or as easily or sometimes at all. sometimes we need your help. sometimes we have to cancel plans. even big plans. even big expensive plans. it’s no fun for us either. sometimes we have to back out of shit halfway through because our bodies have absolutely hit the wall and have failed us. i’ve had to abandon a cart full of groceries before and sleep in my car before i could even manage to drive home because my body just gave the fuck out with no warning. can you imagine? just for a second? imagine being young enough to still get carded for booze and your body literally collapses and you have to almost crawl to your car, sitting in the middle of the floor several times on the way. don’t get frustrated with us, we’re doing our best. it’s just harder than you can imagine.
Also remember just because the cane isn’t there doesn’t mean the disability isn’t there. All of these points are still relevant. Be aware. Be considerate.
“There’s a cure?!” asked the girl that kills everything she touches. “Hey shut up we’re perf” replied the girl that makes clouds.
For real though. Storm has stopped an entire tsunami before. “Makes clouds my ass” she can conjure lightning and tornadoes and is revered as a god in her tribe. She literally changes atmospheric pressure and that’s how she flies. So fuck you. Storm is flawless.
I think you missed the part where the GIRL WHO KILLS EVERYTHING SHE TOUCHES wants to NOT KILL EVERYTHING SHE TOUCHES and everyone dismisses her incredible misfortune just because the lady who is the AVATAR OF THE STORM won the fucking SUPERPOWER LOTTERY
“Finally, a cure for my chainsaw hands!” decreed Chainsaw-Hands Joe.
“There is no cure,” said Johnny Five-Dicks. “There’s nothing wrong with us.”
another person on facebook was having trouble getting their family to understand the spoon theory because they couldn’t wrap their head around the metaphor so I wrote up a detailed version of my battery post I made ages ago inspired by my macbook, might as well post it here too.
I’ve never been a big fan of the spoon theory because it’s kind of
abstract and confusing to explain unless you print out and carry the
thing with you and make people read it because it makes NO SENSE out of
context so I made one that most people will be able to understand
easier. (might not help with elderly people but generally they will get
it because their battery might not be defective, but all batteries stop
holding charge when they get old so they are more likely to Get It without a metaphor)
When you get an electronic device, like a laptop or cell phone it comes
with an rechargeable battery. Some people are unlucky and get a dud. Or
maybe there is a recall and the entire line of the product due to a defect.
My battery isn’t any good.
When I’m all charged up I and it says it’s ok to unplug the charger,
I’m not at 100%. I haven’t been able to charge that far up for years. I
am already basically in the yellow when I start my day. If you only have
a half hour of battery life just browsing the internet, how are you
expected to load a flash video to watch that takes up way more juice?
You can maybe do it with the right help, such as a portable charger
(here representing accessibility devices like wheelchairs, or treatment/medication). Sometimes the percentage amount is also inaccurate
to. It says you have 20% battery and 20 minutes left and then your
computer just -shuts off- out of nowhere. Surprise! you crashed! I hope
you were anticipating that risk and saved your work!
In addition
my charger doesn’t always work.
I can plug it in and it just says “not
charging”. So sometimes you leave the computer overnight to charge and
wake up, wait, 30% battery when my 100% is a normal person’s
60%????!!!?? not fair! This is what happens when you combine in the
restfulness or inadequate sleep.
The combination means you are
really working at rationing what you can do with your device. Should I
turn it off most of the day in case I need it later? How many people can
I talk to on my phone for how long before it runs out of juice. How
much work can I get done on my laptop before the battery dies, possibly
taking the work with it?
That’s how are bodies are. We have to
carefully monitor how much energy we (think) we have, what amount of
stuff we should be able to do with it, what must be sacrificed, as well
as try and keep track of charging stations, battery packs etc. to rescue
us if we miscalculate. And if we do we could lose something important
in the power outage.
But batteries aren’t user replaceable and
we don’t have a warranty, we can’t get it fixed, just have to deal with
it as well as we can. The battery does not define us but it effects every part of our lives effecting everything we do and every decision because while most people haven’t experienced a energy crash, they have probably experienced the hell that is the computer shutting down and destroying hours of effort you’ve put into something as punishment for taking that risk.
Kimchi and Justice 