#nt sci

[crowpunkcognitivedecline]

anyone have power assist recommendations for a manual chair? i've been thinking of getting one for a while but have no idea where to start

[crowpunkcognitivedecline]

this is a cripple punk post [even if it also applies to nonphysical disability]; ableds must tag reblogs with #i’m able bodied

actually tagging my last post reminded me--

if you're making a post about a disability you don't have, for fucks sake, please make or use a modified tag that IS NOT a community tag.

i get that you want to sort topics and make them easier to find on your blog or whatever, but if you misuse tags you are actively making it harder for people to find community.

avoid using just an asterisk or backslash or similar to modify the tag--these tags are usually even more explicitly for the community than the disability's unmodified tag is.

my personal go-to is 're: x', like, 're: intellectual disability', and i think ive seen 'includes: x' for fiction stuff. basically anything works if it's not used by the community. for some disabilities, you're fine just using the name of the disability as a tag, but for many, the name of the disability is the community tag. this is especially common, in my experience, with disabilities that affect cognitive/intellectual/neurological functioning. please err on the side of caution.

please, please, i am literally begging you, let disabled people have our spaces. a huge part of why i made this blog is that the tags relevant to my main disabilities are totally overrun by nondisabled people and "allies." it fucking sucks and does massive damage to disabled people--and i mean that very literally.

[crowpunkcognitivedecline]

just saw someone calling spinal cord injury a “form of neurodivergence” and i need to sit down. several times

[crowpunkcognitivedecline]

confusion sucks. and it’s hard to explain. people think “confused” and they think of what normal-brain confused is, where there’s too many things or it’s foggy or whatever

but no im not “cant decide” confused. im not “too much information” confused. im not “dont understand the language” confused.

im confused as in nothing is in my brain to be confused by. i have a void i can barely pull anything from. i dont know what time it is really and i don’t know what i just said. i get normal confused too!! but this is not not not the same!

and the worst part is im too confused to explain it!

[crowpunkcognitivedecline]

this is a cripple punk post about intracommunity issues; ableds DNI

using my power as a bitch with both hEDS and an SCI to tell people with hEDS to shut the fuck up about SCIs

"some people have dislocated spines from hEDS!" guess what, i'm some people! you're not! stop using me and people with more severe forms of EDS as debate points, we don't fucking like you!

[crowpunkcognitivedecline]

welcome to the fucked up spine blog!!!

hey! i'm crow&, and this is my blog for specifically talking about my spinal cord injury (atlantoaxial instability/AAI) and the way it's disabled me and impacted my functioning.

my blog is by and for people with neurological disabilities, neurocognitive decline/disabilities, and spinal cord/brain injuries. people with intellectual disability are also welcome in this space. details & reasoning are under the cut.

if you want a blog that allows a wider variety of people to participate, you can go to my general blog @crowpunkco.

i've been a cripple & activist for at least 4-5 years now, primarily disabled by hypermobile Ehlers-Danlos Syndrome and related dysautonomias, but my AAI became debilitating about a year ago. this is a space for me to talk about my experience with it.

people with the following can interact:

neurological disabilities includes disabilities and injuries of the physical brain (not psychology or development), spine, and nerves. it includes brain injuries, spinal cord injuries, epilepsy, chronic migraine, and similar. it does not include neurodevelopmental disorders like autism and ADHD, and it does not include mental illnesses. not all neurological disorders are neurological disabilities. (it's not my fault the terms are similar)

neurocognitive disorders/disabilities includes cognitive decline and impairment caused by physical conditions. this includes mild cognitive impairment (the disorder), dementia, chronic delirium, and traumatic brain injury.

spinal cord/brain injuries includes what it says on the tin. nontraumatic spinal cord injuries as well as severe CCI and AAI are included because... well, obviously, that's what i have.

intellectual disability is one disorder/disability/diagnosis. it doesn't include learning disabilities/difficulties. i don't have this, but i trust people with ID, and my NCD is much closer to ID than anything else

anyone else can follow if they like, but are absolutely not welcome to reply or add commentary unless explicitly asked for.

but why?

this is an extremely hard thing for me to talk about, and it's basically impossible for people with these disabilities to talk about our experience without someone derailing it--usually people with disabilities that do not impair their functioning to nearly the same degree who minimize whatever we're trying to talk about. it's exhausting and i just don't have the energy for it.

tags

TBA

[crowpunkcognitivedecline]

people without neurological, neurocognitive, or intellectual disability DNI with this post - click for details & why

what do you do when you have cognitive decline and you’re young? like, genuinely?

my memory loss isn't like ADHD or even dissociative memory loss, which is what people my age have context for. it's an extremely physical issue, and it affects my processing in very specific ways. it's hard to even explain it. it's hard to explain developing a stutter or sudden episodes of confusion that really aren't even a little linked to being neurodivergent when that's all people around you know.

ND amnesia tips and accommodations won't work for me. my memory loss can't be treated the same way, and neither can confusion or similar cognitive decline symptoms. but i also can't really articulate or figure out what'd work either.

most people with my experience are senior early dementia/MCI patients, and that just... isn't my experience beyond the confusion and memory loss. dementia tips also won't really work for me because that's not what i have.

i'm disabled in a way that no one in my life is--and not only that, but no one in my life even knows people like me. and that's a lot. i really just want a way to accommodate myself and explain my needs, but there's absolutely no blueprint.

[crowpunkcognitivedecline]

people without neurological, neurocognitive, or intellectual disability DNI with this post - click for details & why

i think i have vascular neurocognitive disability and i kind of want to just lie down and scream lmao.

i really really really want to talk to a doctor about this but my neurologist is super unresponsive* and i don't think my EDS specialist is familiar enough to help beyond telling me to see that neurologist so. wails.

*as in unresponsive to the point that i was in gabapentin withdrawal for a week because she wouldn't answer calls or emails or put in the order