crow& - 19yo - fey/it - mixed Latine my general/main blog is @crowpunkco - i interact from @bodyetal EDS, MCAS, atlantoaxial instability/cervical spine sublux + all the fun stuff that comes with that
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.
hey, so. in disability pride month/july 2021, i made a flag for cripple punk. i got feedback from a number of cripples on the design and wanted to make a post on it since it's this blog's icon. (sources on my website--photosensitivity warning, the background is a raining gif)
black field: mourning, crips of color
light blue: history, joy, invisible disabilities
gold: perseverance, culture, success
red: strength, life, determination
dark blue: accessibility, mobility aid users, community
triangle pattern: unconventional problem solving, overlapping experiences
to be crystal clear, this is not a new flag. it's over two years old, i just didn't share it on tumblr. if you are a cripple, you are free to use this! i'd love to be tagged in anything you use it for though, just to see it.
ableds can reblog if they use the tag #iām able bodied
a couple days ago we* had our first experience where we had to quietly beg a random woman to pretend to know us.
(āweā being me and my headmate/twin, who was cofronting.)
and it was because a group of three men we passed while using our wheelchair started demanding me to let them push me. one of them followed us for about twenty feet.
iām visibly queerfeminine, visibly disabled, and am compulsively kind and polite to men (because i try to be kind and polite to everyone), all of which makes me quite a vector for street harassment. iām not going to pretend this is even close to the scariest time in general.
but it is the scariest time directly related to being disabled, while using the mobility aid that gives me the least potential for self defense or escape. and i do not ever remember being followed.
i donāt know what emotion i feel about it other than appalled. i am incredibly grateful that the person i went up to immediately played along (and was horrified when i explained why, when i was sure theyd stopped following me), but i cannot fucking believe that had to be necessary because some guys wanted to push my wheelchair.
something about that is way more creepy than any of the sexual harassment ever was.
I would dearly love for more people to be capable of differentiating between public risk and personal risk.
Examples: drinking is a personal risk. Drinking and driving is a public risk. Going scuba diving is a personal risk. Running a scuba shop with faulty equipment is a public risk. Riding a bicycle without a helmet is a personal risk. Not maintaining public transport safety standards is a public risk. Foraging for mushrooms is a personal risk. Advertising a mushroom identification app that uses shoddy AI is a public risk. Elective surgery is a personal risk. Not wearing a mask in a doctor's waiting room when you are sick with a contagious illness is a public risk.
I could go on just about forever here. But it's a really important distinction and it drives me nuts when they get conflated, and it's so common.
i will say this blog feels weird to have as someone who simplyā¦ is not as disabled as i was when i was active with it.
TL;DR: i am no longer severely disabled, and i am wondering what to do about owning a blog by and for folks with severe disability as someone who is now moderately disabled. i would like to hear the thoughts of severely disabled people on the subject. (if you are not severely disabled and do not have a spinal cord injury or CNS disorder, do not add commentary on whether i should continue to inhabit their spaces. it isnāt about youāitās barely about me!)
in general, itās very weird when the severity of your disability changes drastically, and thatās something thatās happened to me several times over the last decade.
iām definitely still more disabled than i was before my spinal injury, or at least before the EDS symptom degeneration that directly preceded it, but i can leave the house. i can think in full sentences. i can go to college (whichā¦ sorry, not the point, but holy fuck i am in college and my college gives me proper disability accomodation, that was my fucking dream.)
again, i really am not making a return to tumblrāone of my headmates is on their stim blog, but i personally really cannot be trusted to be active on tumblr without making myself utterly miserable. i left tumblr mainly because my main blog was getting hate mobbed to the point that i had to private it, and i have not forgotten that. i am not a person who can shut up about shit i find important, but i can have those conversations on a platform less prone to Piss On The Poor Logic than tumblr. (like my collectiveās dreamwidth, though thatās strongly focused on plurality and not on criphood).
but like, the two years i spent virtually bedbound and almost entirely homebound did happen. they were a massive and recent part of my life! (also now that iām back to being a moderately disabled person, i am Extra Pissed about how much moderately disabled people imposed on my severely disabled ass, and on my friends and mutuals and community members who were and remain severely disabled.) i do have a right to retain this blog, even if it feels odd to have one so strongly tied to my experience when i was so much more disabled.
i havenāt decided if i want to edit the pinned post, on who this blog is for and who can interact with it. iād like to hear thoughts on that from severely disabled people, especially people with SCIs, CNS disorders, intellectual disability, and neurological disability (not neurological disordersādisabilities like epilepsy).
i still have thoughts on what my severely disabled life looked like, and i have thoughts on my moderately disabled life now. i donāt expect to post many, if any, of them. but they do exist.
full disclosure when people are like āpeople would ABSOLUTELY take me seriously and treat me with sympathy and understanding if I had something serious like a spinal cord injury!ā all it says to me is that they donāt know any person with a spinal cord injury that isnāt a character from a franchise
every single person Iāve met with a spinal cord injury or CNS disorder has been condescendingly told by doctors, nurses, or caregivers to ājust move, stop fakingā . If thatās your idea of being validated and sympathized with you are a fucking idiot
listen im still not coming back to this blog because tumblr is bad for my mental but i did get sterilized on thursday and holy fuck is my transsexual ass thriving even with all the exhaustion and pain and nausea
a family member didnāt mask at a large event last week, got covid, and gave it to me.
i was woken up at 6am by a dislocated jaw so painful i started crying (i do not cry from pain) and i was going to see my osteopath to relocate it but now i cant.
also my nose is so fucking dry and it hurts like a bitch.
the good news is iām almost completely asymptomatic (for now) but having an awful mcas flare which means i canāt even eat my safe foods and everything hurts
also iād made it four entire years without getting covid. iām vaxxed and boosted and mask. fuck this
anyway tips for being sick with mcas welcome i cant stand this
a family member didnāt mask at a large event last week, got covid, and gave it to me.
i was woken up at 6am by a dislocated jaw so painful i started crying (i do not cry from pain) and i was going to see my osteopath to relocate it but now i cant.
also my nose is so fucking dry and it hurts like a bitch.
honestly i dont think i could do drugs recreationally if i tried. i mean theres something to be said about recreational use being inherently a form of self medicating or whatever but like
theres never a time where i dont also medically need weed.
like itās weird to feel like recreational drug use?? isnāt accessible?? but like i try to vape ājust ācuzā and end up enjoying the lack of joint pain way more than the being high part
its like to the point where being high feels more like a side effect than,,, the reason you take the drug. honestly i think thats the main reason i struggle to empathize with recreational users of drugs i take medically, i just forget that for some people the point is not to distract your bones
it is so frustrating that edibles make everything better except my neurocognitive function so i just. lose a bunch of words and the ability to make points but feel more fine than i ever do
hereās kindling!! iāll add alt text when i can but sheās a very cute calico cat. all my posts of her are on my main but crip blog deserves kibble too
edit: @crippled-peeper oh right here is cats. its actually one cat shes the love of my life
