Ehlers Danlos Zebra

Not Disabled Enough:

Thrown off benefits

Dying after being deemed fit to work

Seen as scrounger

No suitable or accessible jobs

Right amount of disabled:

Inspiration porn

Too Disabled:

No ventilator if you catch Covid

Social care cuts

Independence thwarted

Seen as burden

“There’s always assisted dying”

So since Tumblr decided to drop this the first time that I posted it, here’s a briefer version of this:

I’ve been seeing it go ‘round the internets that ‘using the spoon theory when you are not disabled is appropriation.’

Lemme be the first person to say that a) that is not a universally-held view in the spoonie community b) we don’t have any universally-held views, c) I actually think that view is actively harmful and d) I’m not interested in arguing about it, just please stop saying “this is so.”

This is not so. You are not the gatekeeper to who can or cannot use a word. Unless you are the writer of the original spoon theory essay, you cannot say who can and cannot use that phrase.

Now, on to why I don’t think it’s a bad thing.

1) As neologisms become more common, they become more useful. If an able-bodied friend says “I’m running low on people spoons, can we skip the next thing?” I say “sweet, yes, I was feeling the same thing, let’s go home and watch TV.” Those able-bodied people are speaking my language, and they understand what I mean when I say spoons, and that’s because they’ve taken the time to figure out what that phrase means and how it works and how to use it. HOO-FUCKING-RAY.

2) Using “appropriation” in relation to a word that is younger than my middle dog is, uh, not good, y’all. Appropriation is for white people wearing dreadlocks and girls at Coachella wearing bindis and fucking Chief Illiniwek and the Redskins. Appropriation is for Whole Foods putting peanuts in collard greens and white girls with no training or appreciation painting their hands with random hearts and flowers in henna and buying cheap-ass turquoise jewelry made in China rather than getting it from Native artists. 

Spoonie culture is a baby culture. (Note: this does not apply to all disabled culture, for example D/deaf culture is pretty long-lived.) We should maybe just chill the fuck out before we start yelling appropriation! because yes our problems are many but people using spoon theory to describe how tired they are is not one of them. 

3) AND THIS IS THE MOST IMPORTANT PART: By saying “able-bodied people should not use this,” you are setting yourself and other visibly or openly disabled persons as gatekeepers for the use of this term. You are saying: “you better be out about your disability or you can’t use it, because we’re gonna drag you/call you out about it.”

No one - not you, not me, not anybody else - gets to check anybody’s Cripple Card ™, unless it’s the police literally checking to see if I have my wallet card for my disability placard with me. No one does. No one gets to say “nah, you’ve only got anxiety, you’re not disabled enough.” No one gets to say “you have to disclose your disability or you do not get to use this term.”

Because that’s basically what the upshot of this is: unless you are openly out as disabled, you will not be able to use this term without fear of repercussion – and this site especially is fucking heartlessly beastly sometimes. We eat our own, especially in this baby community of spoonies where we should take best care of each other. 

So, tl;dr: please stop saying ‘this is appropriative’ like we had some spoonie meeting and decided on it, because we didn’t; use of a term makes it more accessible; appropriation as a term doesn’t actually belong to us, we should kinda stay in our lanes here; and please think through what it means when you say ‘no one able-bodied should use this.’ It means you’re saying you feel like you get to determine who can use a term, therefore who is disabled enough, therefore you’re gonna be checking Cripple Cards™ at the door.

No you’re not. 

Look, I’m disabled: visibly, openly, proudly.  I’m paraplegic and I use a wheelchair, so my disability is not something I could hide even if I wanted to. What I’m not, however, is a spoonie, when we describe “spoonie“ as “someone with a chronic illness or disability that regularly impacts their energy levels and/or ability to get things done“.  I use a wheelchair, yes, but I have no problems whatever with energy or getting stuff done (aside from just generally being lazy).

So when people try to gatekeep this terminology and say that only disabled people can use it (which, as stated above, really means only visibly or openly disabled people can use it), what I hear is:  “Hey!  You there, in the wheelchair!  I’ve decided that you are Disabled Enough to use the spoon theory.  I know nothing about you or your disability, but you look crippled so I have decided that I know what you can and cannot do.“

So when you try to play gatekeeper for this, what you’re really doing is giving the rest of us bingo on the “ableist shit” scorecard.  You’re telling us that:

those with invisible disabilities have to prove their disability, because otherwise they are not Disabled Enough, and

those with visible disabilities are obviously worse off than everyone else, because they don’t have to prove how disabled they are, and

there is such a thing as a “real“ disabled person, and you can tell who is and is not one based on… some arbitrary criteria that can not and will not apply to everyone.

-had to undergo very painful surgery to get automail

-had to relearn how to write because of his prosthesis (there’s a post going around showing he had to switch hands etc) and his handwriting is likely a lot worse due to that. This means automail isn’t super good for delicate work, unsurprising, considering what it’s made of. 

-experiences phantom limb pain and therefore other associated stuff (this was only really shown in the manga)

-cannot go anywhere too cold without changing his automail or he’ll get really bad frost bite and it will stop working

-cannot go anywhere too hot, period, because the metal attached and under his skin will overheat and he will be badly burned

-Reattachment is painful, but needs to be done frequently if he breaks or outgrows his automail

- it’s HEAVY so much so that the strain has the potential to cause stress on his body, enough that it’s even theorized as possibly stunting his growth.

-it requires regular maintenance or it will break down, as shown when he forgets to do that and it…breaks down

-when it does need to be repaired, it takes time to do that, during which Ed uses regular prosthetics (that usually don’t quite fit him).

-costs a lot of money (not a problem for Ed due to high state alchemist salary/having mechanics as surrogate family, but explicitly noted to being the reason why most people in the fmaverse stick to regular prosthetics along with the painful surgery)

So Ed can’t actually do everything perfectly and experiences a lot of extra hassle, problems and pain people without automail don’t have to deal with!  And any advantages he does have are more suited to fighting than day to day life (being able to incorporate weapons/fake out people who want to blow up his arm). 

Do you know the definition of the word disabled. Have you ever looked up what a disability is.

Plus, in HTTYD 2, Valka proceeds to introduce her son to several dragons who became disabled as a result of injuries from traps: one with a torn wing, one with a missing foot, and another that’s entirely blind. Plus, there’s Gobber, who’s missing two whole limbs! He has a gangling walk from his peg leg, and has to deliberately switch “hands” with his other and cannot always be properly equipped. We need not get into Drago, but the point remains that Hiccup, Gobber, and these dragons very much are disabled characters.

One could easily call Sol Regem of The Dragon Prince disabled as well, since the burns on his face completely and utterly ruined his sight. He can go by smell and hearing only, which was the saving grace of two beings that he normally would’ve been able to kill within moments. Plus, there’s the ever lovely General Amaya…who is deaf and communicates predominantly by sign and lip reading.

Plus, there’s the ever famous Toph, who while she greatly improved her life when she mastered vibration sight, it’s still imperfect. She still would rely on her friends when she couldn’t properly see (read, during the airship fight during the finale, or when they were putting up Appa’s Lost posters). Plenty of other disabled characters were also shown there.

I get around pretty good with my chronic pain disability but I also 1) use a grabber to pick things up off the ground; 2) had to switch cars for something taller to get into and out of; 3) had to buy a seat cushion and use rolled-up blankets behind my lumbar spine for stability and support; 4) avoid heavy lifting of any kind; 5) use a cane or walking stick on bad days or when walking long distances; 6) rely on daily use of pain medication; 7) get 3 injections of steroids into my spine a year; 8) sleep on a couch because a regular bed doesn’t support my low back the way I need it to; 9) limit my travel due to my inability to comfortably sleep in unfamiliar places, and 10) rely a LOT on those around me to help with the things I cannot do. 

This was just a small number of the adaptations I’ve made to accommodate my disability, and you’d better believe they were painful and difficult when I was creating them. Figuring out how to sleep at night so I don’t wake up every couple hours in debilitating pain was a struggle. Realizing I had physical limitations and coming to terms with them at a young age was a struggle. Understanding there are things I love that I can no longer safely do (horseback riding, bowling, riding roller coasters, and half a dozen others) was a struggle. Realizing and coping with how little the medical profession cares about my pain is a constant struggle.

It's possible, it's probably even more common than people think because it's not talked about that much.