Thread by @bennessb

I understand why people are worried about casual illness language being “appropriated” but I don’t understand why so many people assume that anybody who is undiagnosed but using terms like “spoons” or “brain fog” is non-disabled.

diagnosed folks are the tip of the iceberg.

you literally cannot tell whether somebody is disabled or not by looking at them.

we know this when we talk about ourselves but magically forget when it comes to people using these terms w/o explicitly connecting them to an underlying diagnosis.

this is pretty hypocritical tbh.

(also plz note that I explicitly said casual illness language, I’m not talking about clinically defined terminology. I think precision is important for clinical terminology & also I still think we need to make sure undiagnosed people have access to accurate & appropriate terms.)

(plz note II that I’m not subtweeting any individual person, this is a conversation I see very regularly.)

also, just in general, A LOT of undiagnosed chronically ill people don’t identify as disabled because everyone they encounter tells them they aren’t disabled and it’s disrespectful to real disabled people to even think about identifying that way, so maybe keep that in mind here.

if your argument boils down to “it’s disrespectful to real disabled people to even think about [using that language]” then consider how you may be upholding systemic ableism and not confronting it.

ok (at least) 1 more thing.

I want to be super clear that I’m NOT saying “everyone’s a bit disabled.”

I’m saying “an uncounted # of disabled people are undiagnosed and maybe unaware that their experiences could be considered clinically significant.” they’re not appropriating.

oh also I used scare quotes bc of how the idea of appropriation is sometimes used to gatekeep undiagnosed disabled people who definitionally cannot appropriate disabled culture.

not all accusations of appropriation are gatekeeping because appropriating itself can be violent.

next 1 more thing:

again, I understand what people are wanting to convey, but saying “it’s not about undiagnosed disabled people, it’s about people who are obviously not disabled” is not a slam dunk here.

there’s no such thing as “obviously not disabled.”

I also think it’s important to remember that even in illness & disability communities where we use a shared casual language, we don’t all experience those concepts the same way.

spoons were originally for talking about lupus. running out of spoons is different for different dx.

https://twitter.com/bennessb/status/1491434237421297665

anyway I’ve been LOUDLY MUTTERING a lot about language & illness this week, so here’s more if you missed it and you’re into that sort of thing.

https://twitter.com/bennessb/status/1493201387739566080

alright and then this is why I get so mad about stigmatizing language around alt med and the implication that it exists entirely for malingering wealthy white laddies. (alt med serves & frequently exploits all kinds of desperate medically abandoned people.)

https://twitter.com/bennessb/status/1491779824075128832

the way every variant surge also includes a surge of extremely ableist broader public conversations about chronic / contested illness is really just another layer in the excruciating ableism onslaught of this pandemic.

haha white ladies not laddies. great stuff.

just please consider this whenever some blogger/instagramer/journalist/coworker who annoys you says they’ve run out of spoons and it makes you want to scream. scream at the systemic barriers that leave people undiagnosed and with no access to better language for years, decades.