Every Time Anyone Talks About Liberation For The Intellectually Disabled In Any Real Material Way (i.e.

"ai is making it so everyone can make art" Everyone can make art dipshit it came free with your fucking humanity

can we have a conversation about how abysmal the state of "handicapped" parking spaces are in some places? ive been to two separate places in the last week that labeled a normal spot as an accessible one and just painted it blue. ive been to hospitals and doctors offices that had like 3 spots total. sometimes they're even more inconvenient than the regular spots because they were put somewhere stupid just to get away with the bare minimum. this sucks

We need shittable cities (actively maintained public restrooms).

This is probably still good OpSec, but mostly I need to reblog this to cite it for a paper.

everyone dunking on that automated fleshlight sex toy needs to remember that disabled people get horny too ok 💜

why isn't there much info about coathanger pain with POTS?? or at least why is this not more common knowledge? i don't think i've ever seen anyone talking about this. every time i've asked about it (+other POTS symptoms it comes with in my case) in chronic illness spaces people have suggested everything from fibro, MCAS, a CFS leak, a herniated disc, CCI, etc. but nobody ever said "coathanger pain."

but dysautonomia international posted a silly little graphic on their instagram and now i have my answers to why i was having a ton of symptoms that did suggest a herniated disc but there were no signs of disc herniation upon getting an MRI and for some reason it was triggered by working morning shift/having to be upright for a long time in the mornings. i would get excruciating, searing pain that feels pike a knife has been shoved into the base of my neck and the whole of my upper back would have this icy burning sensation. accompanied by me losing the ability to think straight, losing my coordination, and slurring my speech. i left work crying one morning because of how much pain i was in before i eventually came to the conclusion i couldn't do morning shifts.

that's coathanger pain. my spine is okay (i think...for now, anyway.) according to The Stuff they don't know what causes coathanger pain necessarily but they theorize it has to do with reduced blood flow to those areas of the body (which would track since POTS tends to involve blood pooling in the extremities and such.) it's also not exclusive to POTS and is associated with dysautonomia or orthostatic intolerance in general i think.

One example of the power of obtaining the autonomic history is the Coat Hanger Phenomenon. In people who have neurogenic orthostatic hypotension or orthostatic intolerance, they can complain of pain, or like a charley horse kind of sensation, in the back of the neck and shoulder areas in the distribution that’s like a coat hanger. And it goes away when the person is lying down. That’s an important symptom. And the way I explain it is that the muscles that control your head are tonically active, otherwise your head be falling down all the time. Tonically active. That means they’re using up oxygenated blood all the time. Well suppose you’re in a critical situation where there’s a drop in blood flow at the delivery of oxygenated blood to the head. In that situation these muscles are not getting enough oxygenated blood. They’re tonically active, so they’re producing lactic acid and you get a charley horse, just like you’d have a cramp anywhere else. It’s a skeletal muscle thing. So, I think when somebody complains of Coat Hanger Phenomenon, that’s a very important sign or symptom. And that is not invented. That’s a real phenomenon. It points to ischemia to the skeletal muscle holding your head up.

(Dr. Goldstein, The Dysautonomia Project)

worsening cognitive dysfunction, slurred speech, and worsening coordination because blood's not getting to my brain. bordering on emergency-room-level pain in my upper back and neck because not enough blood is getting to those parts of my body. got it.

anyway, i legit have NEVER seen this discussed until recently and i thought i should share.

post by @ lucyedwardsofficial on instagram showing how the paralympics includes blind/visually impaired viewers of goalball!

My husband and I became catechumens in the EOC for which we are incredibly grateful. Here’s my dilemma though.

I can’t attend Divine Liturgy because of my chronic illness. The priest is very understanding of this and is genuinely trying to accommodate us the best anyone can.

He wants us to get plugged into the community despite my limitations and is thinking of safe ways for us to do so, since I am immunocompromised and my husband (who has lupus) is also facing potential new health concerns. Though we want community as well, I am having debilitating anxiety around it.

My illness is so unpredictable. I have good days and bad days. Some days, I need my wheelchair or another mobility aid (which I don’t like using because I don’t like being vulnerable but I NEED to use them for safety and/or energy preservation). But other days, I do not need anything. Chronic illness has SO MANY facets and triggers and layers of unpredictability! In the past, many people (mostly people from our old church) have accused me of faking my disability when they’ve seen me on a good day, or when they’ve seen me without a mobility aid after needing one a previous day. They’ve told me I’m making excuses, that I’m faking for attention, etc.

No one but my husband ever sees the “details” of my chronic illness, after all. They don’t see me when I’m curled up all night on the bathroom floor bc of gastroparesis agonizing and crying for it all to end, or being SO extremely fatigued due to POTS that I can’t move a limb out of bed. They didn’t see me when I fell that morning which warranted me using my rollator for the rest of the day to prevent another concussion. They don’t see the painful internal struggle of trying to walk in the summer heat without support. Anyone with a chronic illness can relate!

People from my last church (not an OC) said hurtful things and more and told me I’m going to hell for a number of reasons- because I don’t have kids, because I don’t go to church on Sundays etc. i had poured my soul into that parish. Then, everyone left. We felt abandoned.

This served as the catalyst to question our faith -tradition, theology, and everything- and ultimately, everything came together to lead us to Orthodoxy which is a HUGE blessing! But I’m just SO EMOTIONAL because though I’m more than ready to embrace the fullness of faith and the Sacraments when the time comes, I don’t think I can ever be a part of a community.

It’s exhausting to have to try to explain the ins- and- outs of my illness to new people, many of whom wouldn’t even believe me. And I just don’t want to get hurt again. I know it’s wrong of me to assume that every new person I meet will eventually judge me and leave, but that’s just what we’ve consistently experienced. That’s all we know. I have a small circle of friends, and I’ve known all of them for many years - those friendships have stood the test of time and I’m grateful for them.

I honestly don’t know why I’m making this dumb post. I’m not trying to throw myself a pity party, I just need a place to vent and let it all out. I’m also just in a totally bad headspace right now and my anxiety levels overall are insanely high with my husband preparing for a high stakes surgery in a few days and me having side effects from the rescue medication I had to take last night. But if you’re reading this and have any advice, please tell me. And please pray for us. Please pray for peace and healing in our lives, spiritually, physically, and emotionally. Please pray that i can stop myself from spiraling into depression - I can feel it happening. I feel like a burden to my husband and the few friends I have and the devil is probably angry that I made the decision to become a catechumen. Please pray that we can find joy this Pascha, even though we are separated from the Church, knowing that we rejoice in Jesus’s resurrection. The pain runs deep but His love runs deeper.

Thank you. 🤍

i love when i see another cane user/ disabled person in public and we make that eye contact of solidarity

like yes!! you are like me!! i am like you!!

Fuck this one hits home.