Fishability - Disability Awareness, Access, And Positivity

I found an extremely dope disability survival guide for those who are homebound, bedbound, in need of disability accommodations, or would otherwise like resources for how to manage your life as a disabled person. (Link is safe)

How to Get On

How to Get On

How to have a great, disabled life.

It has some great articles and resources and while written by people with ME/CFS, it keeps all disabilities in mind. A lot of it is specific to the USA but even if you're from somewhere else, there are many guides that can still help you. Some really good ones are:

How to live a great disabled life- A guide full of resources to make your life easier and probably the best place to start (including links to some of the below resources). Everything from applying for good quality affordable housing to getting free transportation, affordable medication, how to get enough food stamps, how to get a free phone that doesn't suck, how to find housemates and caregivers, how to be homebound, support groups and Facebook pages (including for specific illnesses), how to help with social change from home, and so many more.

Turning a "no" into a "yes"- A guide on what to say when denied for disability aid/accommodations of many types, particularly over the phone. "Never take no for an answer over the phone. If you have not been turned down in writing, you have not been turned down. Period."

How to be poor in America- A very expansive and helpful guide including things from a directory to find your nearest food bank to resources for getting free home modifications, how to get cheap or free eye and dental care, extremely cheap internet, and financial assistance with vet bills

How to be homebound- This is pretty helpful even if you're not homebound. It includes guides on how to save spoons, getting free and low cost transportation, disability resources in your area, home meals, how to have fun/keep busy while in bed, and a severe bedbound activity master list which includes a link to an audio version of the list on Soundcloud

Master List of Disability Accommodation Letters For Housing- Guides on how to request accommodations and housing as well as your rights, laws, and prewritten sample letters to help you get whatever you need. Includes information on how to request additional bedrooms, stop evictions, request meetings via phone, mail, and email if you can't in person, what you can do if a request is denied, and many other helpful guides

Special Laws to Help Domestic Violence Survivors (Vouchers & Low Income Housing)- Protections, laws, and housing rights for survivors of DV (any gender), and how to get support and protection under the VAWA laws to help you and/or loved ones receive housing and assistance

Dealing With Debt & Disability- Information to assist with debt including student loans, medical debt, how to deal with debt collectors as well as an article with a step by step guide that helped the author cut her overwhelming medical bills by 80%!

There are so many more articles, guides, and tools here that have helped a lot of people. And there are a lot of rights, resources, and protections that people don't know they have and guides that can help you manage your life as a disabled person regardless of income, energy levels, and other factors.

Please boost!

I stand in front of a crowd and tap the microphone. "Disabled people deserve full bodily autonomy," I announce, and the crowd devolves into shouting. I am being asked about every single contingency in which bodily autonomy can possibly be taken away. I am not allowed to ask these people why they want so badly to control disabled people's lives. I am a representative, after all.

A man in the third row calls me a whore. A woman up near the front calls me a filthy god-hating anarchist. I am the villain of the story. I'm ruining their childhoods when I point out the flaws and ableist tropes in media that I never said they weren't allowed to enjoy. I'm policing their language when I ask them not to use slurs.

Someone else calls me a fascist. A Creationist with Calvinist leanings is using the same arguments against me as the literal social Darwinist. The topic of "faking disability" is brought up and everyone suddenly has a story to share and presents it to me. I am horrified by most of these stories because they feature ambulatory wheelchair users being harassed and young people with invisible disabilities being chased out of bathrooms.

I tap the microphone again and announce, louder, "Autism speaks is actually a hate organization." At this rate, I'm never going to get to my powerpoint on the social/medical model of disability and why the intersection is important. But I am a representative, and in between the name calling and accusations, they are asking me questions. And so I answer.

We need shittable cities (actively maintained public restrooms).

Adult diapers are for disabled people. Full stop. That is what and who they are for. They are for disabled people who need to wear them because of their disabilities. They don't exist for kink. If someone is using them for kink that is not the fucking fault of disabled people. Stop acting like every adult who wears a diaper is disgusting. You're disgusting for assuming that over what the diaper was fucking made for. Grow the fuck up. Someday you'll lose control of your bladder and bowels too.

This is that giraffe bottle i was talking about in case anyone else with complex needs wants it. It's pretty cool and I'm definitely keeping it in mind for when I eventually DO need to transition to something that doesn't need to be picked up at all.

A disabled woman fell on the bus I'm on and I'm literally the only one who listened to her and didn't try and pull her up when she said she wanted to sit for a second, or crowd her saying what she should do next.

Can we actually listen to disabled people maybe? This is exhausting.

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.

"gnc straight man being called a faggot doesn't experience homophobia" what the fuck are you talking about. there's absolutely no logic in anything like that. we have kids who literally killed themselves because of homophobic abuse in schools and you would dare to tell them it isn't homophobia that killed them because they weren't actually gay? insane. and so fucking cruel