Happy Disability Pride Month To Those With Conditions No One Talks About, Online Or In General:

happy disability pride month to those with conditions no one talks about, online or in general:

multiple sclerosis (me lol)

marfans

cerebral palsy

bells palsy

hidradenitis suppurativa

cauda equina syndrome

mixed connective tissue disorder

hyperadrenergic pots

non hypermobile eds types

stickler syndrome

mitochondrial disease

cystic fibrosis

sickle cell disease

myasthenia gravis

post-cholecystectomy syndrome

SWAN (syndromes without a name)

...just to name a few. i see you and you deserve awareness and understanding.

this list is non exhaustive, rb with other conditions you want to see represented!!

Happy Disability Pride Month To Those With Conditions No One Talks About, Online Or In General:

[ID: a post banner with dark red background and medium grey bolded text in the center. it reads “This post is about physical disabilities, do not derail.” On each side there is the dynamic disability icon, a gray symbol of person in manual wheelchair leaning forward with arms bent behind them mid-push. /end ID]

More Posts from Fishability and Others

1 year ago

the worse climate disaster gets, the more you’ll see closet eugenicists start to advocate for letting people die. you need to be prepared to combat the ideology wherever you see it, because it’s only going to get worse and worse Read everything having to do with climate disaster critically. If the central argument underlying what’s being said is that the death of disabled and/or racialized people is inevitable, natural, or desirable– that’s a fascist.

they might be appear to be a garden variety republican or liberal or even a leftist at first, but know that if that argument is being made, their underlying ideology is one of supremacism, and given additional climate stress, they will become more blatant about it.


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5 months ago

I realized the other day that the reason I didn't watch much TV as a teenager (and why I'm only now catching up on late aughts/early teens media that I missed), is because I literally didn't understand how to use our TV. My parents got a new system, and it had three remotes with a Venn diagram of functions. If someone left the TV on an unfamiliar mode, I didn't know how to get back to where I wanted to be, so I just stopped watching TV on my own altogether.

I explained all this to my therapist, because I didn't know if this was more related to my then-unnoticed autism, or to my relationship with my parents at the time (we had issues less/unrelated to neurodivergency). She told me something interesting.

In children's autism assessments, a common test is to give them a straightforward task that they cannot reasonably perform, like opening an overtight jar. The "real" test is to see, when they realize that they cannot do it on their own, if they approach a caregiver for help. Children that do not seek help are more likely to be autistic than those that do.

This aligns with the compulsory independence I've noticed to be common in autistic adults, particularly articulated by those with lower support needs and/or who were evaluated later in life. It just genuinely does not occur to us to ask for help, to the point that we abandon many tasks that we could easily perform with minor assistance. I had assumed it was due to a shared common social trauma (ie bad experiences with asking for help in the past), but the fact that this trait is a childhood test metric hints at something deeper.

My therapist told me that the extremely pathologizing main theory is that this has something to do with theory of mind, that is doesn't occur to us that other people may have skills that we do not. I can't speak for my early childhood self, or for all autistic people, but I don't buy this. Even if I'm aware that someone else has knowledge that I do not (as with my parents understanding of our TV), asking for help still doesn't present itself as an option. Why?

My best guess, using only myself as a model, is due to the static wall of a communication barrier. I struggle a lot to make myself understood, to articulate the thing in my brain well enough that it will appear identically (or at least close enough) in somebody else's brain. I need to be actively aware of myself and my audience. I need to know the correct words, the correct sentence structure, and a close-enough tone, cadence, and body language. I need draft scripts to react to possible responses, because if I get caught too off guard, I may need several minutes to construct an appropriate response. In simple day-to-day interactions, I can get by okay. In a few very specific situations, I can excel. When given the opportunity, I can write more clearly than I am ever capable of speaking.

When I'm in a situation where I need help, I don't have many of my components of communication. I don't always know what my audience knows. I don't have sufficient vocabulary to explain what I need. I don't know what information is relevant to convey, and the order in which I should convey it. I don't often understand the degree of help I need, so I can come across inappropriately urgent or overly relaxed. I have no ability to preplan scripts because I don't even know the basic plot of the situation.

I can stumble though with one or two deficiencies, but if I'm missing too much, me and the potential helper become mutually unintelligible. I have learned the limits of what I can expect from myself, and it is conceptualized as a real and physical barrier. I am not a runner, so running a 5k tomorrow does not present itself as an option to me. In the same way, if I have subconscious knowledge that an interaction is beyond my capability, it does not present itself as an option to me. It's the minimum communication requirements that prevent me from asking for help, not anything to do with the concept of help itself.

Maybe. This is the theory of one person. I'm curious if anyone else vibes with this at all.


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2 weeks ago

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

fishability - Disability Awareness, Access, and Positivity

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6 months ago

A friend of mine recently broke her foot.

She's a wonderful friend. A deeply kind and considerate person. One of the first things she did after getting out of the hospital was to apologize to me.

"I'm so sorry. I had no idea."

"Hun, you're the one with the broken foot. What are you talking about?"

"I had no idea it was so hard for you all the time... There are stairs everywhere... Even in places where there's supposed to be a lift. And often the lift doesn't work. And there's pavement where my crutches keep getting stuck.... I'm so tired because walking like this isn't the same but there are no benches where I can rest....

You tried to explain and I thought I understood.... But I really had no idea. And this is what it's like for you ALL THE TIME.... I'm so so so sorry"

God how I cried.


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1 year ago

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!


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1 year ago

I want more people to be aware of disabled joy. The freedom of getting the right mobility aid. The sense of victory and accomplishment when doing a task you thought you would never succeed at. The smug superiority of zooming ahead of your walking friends on a downhill slope. The relief of a proper diagnosis answering your questions. The peace of learning how to radically accept yourself and your body. It ain’t all bad, folks.

A person in a wheelchair popping a wheelie in a park

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1 year ago

Not smoking weed before I use my forearm crutches so I'm not operating machinery under the influence


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1 year ago
This Is Gonna Be A Really Cool Frame To Apply To Anyone With Any Mental Illness Stiffer Than Light Social

this is gonna be a really cool frame to apply to anyone with any mental illness stiffer than light social anxiety. can't wait to be berated for having an autistic meltdown and not taking personal responsibility for how much of a fucking bummer it is for everyone around me lmfao


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6 months ago

wheelchair users deserve a minimum of three wheelchairs to meet different needs. like, bare minimum of indoor chair, outdoor chair, and off road chair. chairs that meet different needs for transport, activity, positioning needs, energy levels, etc.

there is not "one chair" that can meet every need. wheelchair users deserve to have multiple chairs that meet specific needs, no matter how complex their seating/positioning needs. we deserve to at least have a backup if our chair breaks that is just as suited to our needs.


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fishability - Disability Awareness, Access, and Positivity
Disability Awareness, Access, and Positivity

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