Chronically Jill

Spoonie Mutant Zebra I'm Jill, 29, full time Auntie. Degree in mathematics and minor in ASL/Deaf studies. I have hEDS which causes CFS, POTS, joint instability, SAD, GI issues, lack of thermoregulation, skin issues, weakened immune system & more. They/she.

[sadhoc]

when disabled people talk about fakeclaiming, i think most people on here think we’re talking about rude anons, or some stranger on the bus saying you don’t really need that cane. But we’re also talking about like. The social security administration. Doctors who are in charge of treating us; who deny care because they think we’re faking. Family members who withdraw material support because we aren’t improving when they think we should, and refuse to look for alternative caregivers. And this kills people. Disabled people die without benefits that would keep us housed and fed, without necessary medical treatments, without our care support systems. Fakeclaiming isn’t just rude. It’s deadly

[identitty-dickruption]

the thing is. knowing someone experiences hallucinations or trouble reading facial expressions or communication difficulties or any other symptom CAN help you to understand their behaviour and respond to it appropriately. but knowing someones diagnosis is never as helpful as it is to listen to them when they talk about how they can best be accommodated. and if “can you please speak slower” (for example) sounds like a ridiculous request from someone without a diagnosis and a reasonable one from someone with a diagnosis. well you’re the dick in that situation

[liberalsarecool]

The 'all lives matter' MAGA pro-lifers are a Christofascist eugenics movement.

[bogleech]

the white house is now so right wing, the GOP turtle man is by default on "our side." Trump's only response to this so far is to insinuate he's lying about the polio. Classy!

[help-help-i-need-an-adult]

[meatmensch]

guy who has chronic pain and fatigue: man why can't i do more stuff

[meatmensch]

guy who has chronic pain and fatigue: man i'm so tired today for some reason

[leolaroot]

time of year i remind every cane user to get an ice pick so you dont fall and die

[leolaroot]

almost biffed it in a fucking parking lot so time for me to repeat this. if you are a cane user in the northern hemisphere its time to get an ice spike coming in the mail BEFORE the ice forms.

[leolaroot]

@phantomwinds and @strawbebbynya asked in the tags if anyone had advice for winterizing a rollator walker, i dont use a rollator very often but I'd suggest using zip ties around the wheels as improv tire chains. disclaimer that ive never done this before personally but its advice ive seen wheelchair users share.

[leolaroot]

i appreciate that this is still in circulation and i can see the pre-autumn wave of reblogs picking up lol. ice pick is not a gimmick its genuinely useful and can be a life saver. every year winter reaches further towards the equator and new people are finding themselves at risk of ice with no experience for how to keep safe

[thestrawberrydreams]

Inclusive language is for everyone!!

[allllltheautism]

So this is really awesome! These are Disney princesses reimagined as disabled and drawn with service dogs. The artist, Arien Smith, drew these in 2017, but they have become viral only recently. Arien features all types of dogs in his portrayals as a way to educate about disabilities and service animals. He also does other dog related art. Arien can be found on Facebook under Royal Service Dogs or the major barkana. Hopefully more artists, or, you know, actual major film/tv/book creators begin to incorporate disabilities and service animals rather than pretending like they don’t exist (but that’s a different rant for a different day, 🙃).

Image descriptions: Disney princesses Cinderella, rapunzelle, tiana, sleeping beauty, belle, Snow White, and Pocahontas featured with various disabilities and service dogs of various breeds assisting them in daily lives. The last image in of a Facebook post that features the same pictures, but as line drawings, so they can be colored in.

[aquilacalvitium]

These are absolutely fantastic!

[pouchrat-deactivated20190708]

[Further description: Cinderella’s service dog helps her take off her shoes; she has fibromyalgia. Rapunzel’s helps with tactile stimulation & grounding for her Complex PTSD & Dissociative Identity Disorder. Tiana’s dog helps with her autism, “tactile stimulation, interruption of physically harmful behavior, guiding during overstimulation episodes, and anxiety calming techniques. Sleeping Beauty’s dog elevates her head when she falls asleep during the day due to her narcolepsy; “Her service dog’s name is Spindle”. Belle’s dog lets her know if someone is coming up behind her, to help alleviate anxiety and startle responses. Snow White’s dog alerts her to the presence of apples in her food, which she’s allergic to. Pocahontas has diabetes, and her dog lets her know if her blood sugar is too high or too low; “At the request of some Native folks, I made some minor modifications to her outfit”. Her tattoo from the movie has been replaced with an armband of feathers, her necklace has been thickened, and her clothing now has a visible seam down the side. End Description.]

You can find them on Tumblr too @themajorbarkana!

[allllltheautism]

Thank you for expanding on the image description!

[femcassidy]

i want you all to know that there is an artist (carmen papalia) who, after he started using a white cane, assembled a 12 foot long white cane and began using it in downtown vancouver. the length of the cane made it functionally useless as a device and the only purpose it served was making him an obstacle for sighted people. dare i say… 2019 goals

[femcassidy]

therapist to sighted patient: long cane isnt real and it cant hurt you

carmen papalia:

[id: a dimly lit photo of carmen papalia using his 12 foot “long cane” piece. he walks casually behind it. the cane takes up the majority of both the photograph and the sidewalk.]

[thevioletsunflower]

Okay I went to a conference where this guy was a keynote and he’s so fucking cool. He’s done a ton of art around disability rights. The twelve-foot cane is really cool, but here are some of my other favourites:

From the series on replacing his cane, this is one where he replaced his cane with a megaphone and would stand at intersections repeating “I can’t see” until somebody would stop and help him cross the street

Another cane replacement, this time replacing it with a high school marching band who would change the music depending on if there was something in the way or not.

A museum intervention where he got people at the MET to go through the museum with their eyes closed and experiencing touching things he’d gotten permission to touch (the floor in this image) and just exploring a visual art museum blind.

The Blind Field Shuffle, in which he has dozens of people form a conga line behind him with their eyes closed and leads them on a blind tour of the city - literally the blind leading the blind.

Wish I could find a better photo, but this is a museum gallery he curated where the works are almost at floor height, making them accessible to children, little people, and people in wheelchairs, but requiring abled people to bend down or sit on the floor in order to see them properly.

In short, this man is amazing and I love his work.

[extrastentialist]

id’s in order

[begin id 1 of 5: a photo of carmen papalia from the upper torso up holding a megafone to his face while walking on a sidewalk. He is at the forefront of the image in the camera’s left corner, and the megafone takes up a lot of the corner. behind his head stretches the sidewalk and road, with a fence and trees on the other side of the sidewalk on the camera’s right. he’s speaking through the megafone with a neutral expression. it has captions that read: “I can’t see you” four times. end id 1 of 5]

[begin id 2 of 5: a photo taken across the street from where carmen papalia is standing at a crosswalk and facing the camera with a marching band behind him. the marching band’s conductor has his back to the camera and is in the middle of conducting as some people watch from the camera’s right. end id 2/5]

[begin id 3/5: a photo of two people who are kneeling on the floor of a museum, one has straight mid length dark hair, the other has long hair tied back. The one with their hair tied back is guiding the other person’s hands along the floor, both look happy. there are museum goers in the background and to the camera’s right. end id 3/5]

[begin id 4/5: a photo taken of carmen papalia walking down a sidewalk towards the camera with his cane. he is leading a long group of people who have their eyes closed. half the line is approaching a turn in the sidewalk that the others have already taken. most of them look happy. Carmen and people close behind him have more neutral faces. there is an onlooker from the camera’s right who looks like an officer of some type, his expression is neutral. end id 4/5]

[begin id 5/5: a photo taken from a low pov of a museum display where all the images are close to the ground. Someone is standing close to the camera but facing away, i think it’s carmen papalia. there are a few people sitting on the floor looking at the artwork. end id 5/5]

[fred-erick-frankenstein]

Thank you for the image description!!

[zelda-and-princess-hyrule]

Trickle down therapy, when one person in your friend group is able to get therapy, and teaches the rest of the group some of the strategies they have learned

[autistickeely]

Language really matters, so change the way you phrase certain things around autism. For example, instead of autistic symptoms, say autistic traits. Instead of disorder, say neurodivergence. Instead of people with autism, say autistic people. It’s not hard to make these little changes and yet the impact they have is huge. It’s a big step in the right direction towards autism acceptance.

[avfwdrugec]

Gentle reminder that the human eye is naturally drawn by noise and movement, so the next time you walk into a crowd or a bit late into a lecture or something like that, they’re not staring at you or judging; it’s just an instinctive reaction that has nothing to do with you doing anything wrong.

[amymaymusings]

This really helps my anxiety.

[hinohde-deactivated20180613]

oh.

[systlin]

It’s literally a threat assessment/food gathering instinct. The steps your brain is doing, subconsciously. 

-Check to see if movement is lion in grass.

-Also check to see if possible game animal and edible. 

-No it’s just Dave getting into lecture hall a few minutes late. 

-That’s boring. 

-Lose interest. 

[frogitivity]

People talk about needlessly gendered items but one time I got diagnosed with female presenting autism and I’m still losing my mind over it

[criticallyalexandrite]

This is why Autism Speaks studies are invalid. it’s resulted in people thinking that only men can have autism. Thus resulting in stupid terms like female presenting autism.

[veemopusvulgaris]

FEMALE PRESENTING AUTISM???

[800-dick-pics]

I refused to give my adhd evaluator my gender/sex so she logged my traits and answers from the questionaires both for the “male” adhd and “female” adhd traits and the results varied so much that even my evaluator was shocked by it bc it was the first time she had done both “genders” for one person (and i think it opened her eyes on how wrong and inaccurate sexed tests/evals are). my hyperactivity, and impulsivity scored lower (aka downplayed) on the female page but had a HUGEEEEE spike for it on the male page, their were things like my emotional dysregulation that were also“less apparent” on my female results than my male ones. Genuinely ask who ever is evaluating you to remove sex/gender from the evaluation process and if they refuse demand that they test you as a “male” and “female” Lots of us esp black and brown autistics and adhders are getting duped out of a proper diagnosis bc white perisex cishet people are seen as the “standard” for literally everything in the medical field 

[aspecpplarebeautiful]

Do you like your labels? Are they useful? Do they communicate what you want to communicate about yourself to other people? Then they’re good labels.

[starry-genome]

Please reblog if you are 20+ and are mentally ill. I see so many posts by mentally ill teenagers and that’s great, but I feel like I’m too old to have depression and anxiety and other mental issues to the extent that I do.

[the-spoonie-life]

Almost 22 and have seperation anxiety and selective mutism (worst name for becoming involuntary mute when stressed and anxious btw)

[jellyfishjammin]

The “I am a piece of shit and nobody will ever love me” factoid is actually a statistical error. You are actually are fantastic and infinitely worthy of people’s company.  That person you used to care about, who taught you to hate yourself by abandoning you, is an outlier and should not have been counted

[ayellowbirds]

this is the greatest and most positive use of a meme that i have ever seen.

[theroguefeminist]

Just a reminder because apparently people don’t realize this, but the rainbow gay pride flag isn’t like…a gay male pride flag? it was literally meant as a pride flag for everyone in the community. not that there’s anything wrong with specific identities having their own flag, but i keep seeing ppl post flag sets as if the rainbow ride flag only represents gay men and saying that not including every single other flag known in existence means you’re excluding people when no it’s not the rainbow flag is for everyone

[beanierhodes]

I think this is really important for people who are daunted by all the labels and still figuring themselves out. It’s okay. The rainbow flag is yours too