#Disability Community

[the-cryptid-next-door]

I've been seeing some discourse in the community about how people with mild to moderate chronic illness/disability are bombarding posts from our severely disabled kin.

Community is about finding your people, of sharing experiences that align and learning from others who have different ones. We should never be speaking over others when they're coming from a place of intimate knowledge.

I.e, I have hEDS & Co on a moderate level. Some days are harder than others, and my disability is dynamic. I can only speak with certainty about my own experience. People in my position should not be lecturing people in the community who have more severe conditions. We should not be derailing their posts to make them centralized on ourselves.

If a person is speaking about the frustrations of full-time carers not meeting standards and you live independently? Not your time to speak about how "Oh, I wish I had someone to help me!!"

If someone is expressing frustrations about needing a new seating system for their powerchair because their current one is impacting their very ability to breathe/be upright/reduce their significant pain? Not the time for "You're so lucky, I wish I could have a wheelchair!"

If someone is visibly disabled all the time and you think that gives them some kind of privilege from the ableds? Dude, fucking what?

All I'm saying is "read the room." Listen when you don't know, relate where you can, and try to learn shit from one another. It's not that hard. And maybe, maaaybe, understand that the connotation of "hEDS girlies" are becoming more negative because the behaviors are fucked.

I don't like knowing that my diagnosis is associated with toxicity in my community, and I'm asking us all, formally, to do better. We need to if we're gonna fight the government for our basic rights.

[irrepressible-domovoy]

Update: Rent is tomorrow and I have $100 and nothing for groceries.

I'm going into year 4 of waiting for disability and am losing my ability to do basic things around the house. I'm also losing the ability to walk most of the time, which I've been trying so hard to pretend wasn't happening but can't anymore.

If anyone can help in any way, even just sharing this post, I would greatly appreciate it.

I discussed the situation with my therapist this week and she isn't sure how I've managed to stay alive this long, even without the physical health issues.

If anyone is able, please help a queer, disabled household pay our bills? (Ko-fi link)

The world is very hard for us while two out of the three of us are waiting for disability and any help would be appreciated. (It also turns out, I'm a DEI hire, so there's that)

I have been planning on streaming video games on twitch on Saturday nights at 7pm EST. We will be starting on February 1st and a poll has decided that we will start with Persona 5 Royal.

I am also working on recording myself reading banned books, so if you're interested in that, let me know! I also write fanfiction and am willing to write for prompts!

I'm hoping building community will help makes things easier in the next four years, so here's a start.

Edit (April 29, 2025)

My bosses have only been giving me one day a week so I am bringing home less than half of my rent, (my portion is $400/month) which obviously isn't enough for rent or anything else I need.

My sisters and I are fighting tooth and nail to stay afloat, but at this point we can't.

My disabilities are also getting worse every day and I'm to the point where I can't hardly get out of bed most days. I did have a phone call with the disability office again, but I probably won't hear back for another six months at least and even then I may not be approved.

If there is any way you can, any help is appreciated. Even just sharing this post is helpful. We're desperately trying to make it until I can get disability.

I have a caseworker now who is helping us get food stamps and trying to find us a place to stay just so we can get out of this rat trap, but we still need help.

EDITED ADDITION

So, it looks like my ESA has some health issues that will take constant care to address and money will be even tighter.

Her previous owners apparently fed her things that were very bad for her and ruined her stomach, so now she needs special food. (She's just like me!) We are also pretty sure she has asthma so we will have to get her medicine to help her breathe.

We know exactly what she needs and are working to get it as soon as possible, but we will have to continuously keep up on those medications and food.

Her name is Holly and she would deeply appreciate any love and support you could send our way.

[writing2changetheworld]

The Rollettes are in a Lady Gaga music video! This is huge! This is amazing!

[yellow-dress-basil]

QUICK PSA FOR THE DISABLED COMMUNITY

If you take any daily medication, do not eat grapefruit or activated charcoal unless you know for a fact they won’t affect your medication.

Both Grapefruit and Activated Charcoal will cancel out medication.

‘Where would you ever eat activated charcoal?’ You may be asking

Well

Halloween eve is here y’all and if you want a black cocktail or cupcake, it was probably made black with activated charcoal! So please double check before consuming!!

[chronicsymptomsyndrome]

I know its kind of silly to say “don’t feel bad for canceling because of pain, fatigue, etc” because I know guilt is a reflex you can’t easily refrain from. But you can reason with yourself so instead I’ll say this:

Nobody can feel what you’re feeling but you. Nobody knows the severity of what you would be putting yourself through if you were to “tough it out.”

If you do “tough it out,” the purpose for you doing the thing will most likely not be fulfilled anyway. You probably will not be mentally present or engaged. You probably will not have a good time or get much out of it. Etc.

If people really have such a problem with it, thats a huge red flag. Being transparent about your needs and boundaries is a great way to weed people like that out of your life.

If you have any kind of chronic illness or disability, remember that you probably have a very warped judgement of what is “reasonable” to endure in terms of pain, fatigue, burnout, etc.

You didn’t ask for this, you don’t deserve this, there is no reason you should have to bear the weight of it alone. I bet if someone else was in your position, you wouldn’t mind helping accommodate for them?

Low energy days are truly sacred, take them seriously. Please respect your body’s signals. “If you do not choose times to rest, your body will choose for you” or however the saying goes

It is so much pressure to have to deliberate what sacrifices are necessary for proper self care. Give yourself extra credit for having to deal with that stress on top of whatever is putting you in that position in the first place. Thats a lot at once

You are leading by example and showing others that you would never expect them to hurt or overextend themselves for your benefit. Putting yourself first always inspires other to do the same.

Please be proud of yourself for even considering canceling and putting your needs first. That is so strong of you <3

[jasondamien93]

Resist Fascism ✊🏻

[painedandconfusedsblog]

I don’t know who needs to hear it but it is not a moral failing if you are doing all that you can to relieve pain yet are not making a dent. It’s not your fault. Your pain is not your fault. Relief isn’t happening because your pain is mighty and under treated. Not because you aren’t trying hard enough. Your pain is not your fault.

[schizopositivity]

Shout out to everyone with an intellectual disability!!

I love you. You have so much value. You are an important part of the disability community and the world as a whole.

I will gladly wait if you need time to think of a response when we are having a conversation, because I want to hear your opinion. I will gladly do my best to understand your intention if coming up with the right words is difficult. I will gladly explain things to you if you need that. Your unique perspective is important to me.

[mxmorbidmidnight]

Being disabled in public is crazy because I never know when people are gonna shove me in front of an audience and make me give an “inspirational speech” hoe please let me buy my fucking cheese and tomatoes in peace.

[dreamdropsystem]

don't just use mobility aids on your worst days. don't push yourself to the point you have to use it. use them even on less pain days too.

[niightegoblingtyime]

Thank you for reading my zine on fanfiction and disability!

One of the big obstacles for disability advocacy is when disability gets divided into small categories, with each individual disability only standing up for people like them. But we really are all one community!

What they don't want you to know is that inclusion is accessible to anyone! Whether you're disabled, a fanfiction writer, or both, we all have similar values! We're all on the same team!

Shoutout to @valleykey for letting me include a paragraph from their Jujutsu Kaisen fanfiction something funny that ive learned!

[vitiligo-is-not-a-trend]

FAQ (PLEASE READ BEFORE SENDING ANY ASKS!):

I have vitiligo does that mean I can't do X, Y, or Z?:

If you have vitiligo: Welcome to the club :D! In general this advice is mainly aimed towards people who don't have vitiligo, BUT if you do, do what you want! The only thing I would ask of you is to be aware that A) People might not be aware that you have vitiligo which is why you're taking liberates with it, B) People might try to emulate your depiction so if someone without the disorder doing something you might find uncomfortable, keep that in mind! and C) Be mindful of whether or not you're contributing to potentially harmful stereotypes! I'm not going to tell you, someone with the disability, that things are off limits, and I am aware that not everyone feels the same about this disorder, but keeping those things in mind won't hurt anybody!

Is it okay for vitiligo to be animal or shape based in pattern?:

NO. It's de-humanizing and harmful as many ablest insults aimed towards people with this disorder are animal-based. Also it purposefully goes out of it's way to make a person less human purely because they're disabled, which is obviously ablest in itself. Vitiligo is a disorder, NOT an aesthetic.

The same applied for characters inspired or based on animals, especially ones that are patterned.

YES this also includes giving them patterns like paint splotches, hearts, stars, and other stuff like that.

How does vitiligo develop?:

Vitiligo is an auto-immune disorder, which means its genetics based, BUT(!) it is not something you are born with, and needs to be developed through a person's life time. There are theories as to how it develops but as far as I'm aware there's no one solid answer.

Are POC the only people who can develop vitiligo?:

Nope! Vitiligo can occur in anyone of any race/ethnicity. The reason why you only see people with darker skin tones portrayed with it is because there's more visual contrast, thus making it seem more unique/distinct/obvious.

What does this blog offer?:

I do all sorts of things! I show examples of vitiligo represented in media, answer any questions people might have about it in general, questions specific to character/plots, character design tips, and sensitivity reading just to name a few!

Why am I not answering an ask?

I've got a few mental and physical conditions which make me extremely tired all the time and sometimes I just don't have the mental energy to do it </3

Also some asks are tricky! I might just horde the ask until I can think of a proper way to respond or if vitiligo finally gets enough media rep that I can do a proper analysis or make an actual wish-list lol.

Who runs this blog?:

@trinrose3! I developed vitiligo when I was 7 years and and for the majority of the time that I've had this disorder I felt disgusted and ashamed of it. Over the last few years I've learned to appreciate my vitiligo, as well as develop a slight hyperfixation on it in general, so I made this blog in order to spread awareness and positivity!

I'm the only one running this joint so if I'm being a little slow to answer an ask please be patient <3

Also here's a link to my ko-fi I'm struggling to pay bills and the health issues, job market, and other life circumstances are making it really hard right now so every penny is appreciated! I also take art commissions!

https://ko-fi.com/trinrose3

[liminalweirdo]

In today's update of Canada Loves Eugenics, 10,064 people died in 2021 through medically assisted death in Canada, and while MAID supposedly exists to allow people with severe, incurable illnesses to die with dignity on their own terms, MAID is generally used because disabled and mentally ill people cannot access governmental assistance and are living in poverty.

The Canadian government is actively pushing poor, disabled people to death.

oh and by the way, Canada performs more organ transplants from MAID donors than any other country in the world.

"Six disability rights and religious advocates told Reuters that the pace of the planned changes to the assisted death framework in Canada brings additional risks of people opting for MAID because they are unable to access social services - the lack of which could exacerbate their suffering." - source

Anyway, it's basically like this: the USA has the Americans with Disabilities Act and Canada has MAID

[chronicsymptomsyndrome]

sometimes when chronically ill/disabled/neurodivergent people say “I can’t do this thing” they really mean “I can technically do this thing I guess, but not without pretty significant repercussions” and I really need more fully-abled people to understand the validity of that

[dyspunktional-leviathan]

You are not a disability advocate if your entire point is "actually, disabled people (or people with x disability) Can do xyz!"

Imagine making disability advocacy/pride about ability.

Yet so many people do.