all pain, no gain

pots, post concussion syndrome, hsd, mcas, gastroparesis, pkd

[ymirjotunn]

btw if you haven't commented on it yet, the fda is taking comments on their proposed rule banning shock devices for autistic people at the judge rotenburg center. they are taking comments until may 28th.

asan wrote a good plain language guide on how to submit a comment if you are not sure what to do!

even just a few sentences saying this is a good rule will be enormously helpful. thank you!

[cock-holliday]

Judge Rotenberg Center - Wikipedia

Judge Rotenberg Center - Wikipedia

JRC got condemned for torture from the UN Special Rapporteur in 2013

TASH and the APRAIS coalition sent a letter to the Centers for Medicaid and Medicare Services and to the Department of Education requesting

#StopTheShock - Autistic Self Advocacy Network

What's happening at the Judge Rotenberg Center? People with disabilities, ASAN, and our allies are fighting to end the use of electric shock

The FDA was able to secure a ban on the use in 2020, then was overturned in 2021. They are now seeking a new route to ban them.

[othert]

iirc there's also proposed legislation in new york state to ban sending NY students to JRC, which is the source of a majority of people sent there

[thoughtportal]

painting made easier

[werewo1fcatboy]

[Audio Transcript:

Do you want to paint but pain, disability, limited range of motion or tremors are getting in the way of that?

It’s world watercolor month and disability pride month, so let’s combine the two and talk about ways that you can watercolor and make it a little easier on yourself.

First up, if you struggle with grip issues, some manufacturers like Blick will actually make some of their brushes with egg shaped handles.

These are typically easier to hold, but they do come in a limited range of options so you can get something like one of these egg shaped pencil holders that will do more or less the same thing. These are just a bit easier to hold and they can reduce hand fatigue.

Next up, if you struggle with something like tremors or shaking, weight is your friend. There are universal weighted handles that you can slip onto the end and tighten on your brush or whatever you’re using as long as it fits in, and it adds a bunch of weight to the back end of it so it reduces the amount of shaking that’s possible.

If you struggle with grip strength or need something to help you hold onto something, this is an easy ring writer clip, and you can slot your brush into it and even if you’re not gripping it tightly it’s still secured to your hand.

Another option is something like this, this is an easy grip. It’s a silicone attachment that you can place on that give you an extra handle and extra security for holding your brushes and other art tools.

And finally one of my favorite tools is this artist leaning bridge. Mine is an acrylic piece of plastic that just sits over the top and allows you to rest on top while you can paint underneath it.

End Transcript]

[chr0niciconic]

I used to be used to bad doctors who didn't listen and didn't care and I knew how to navigate that or cope with it better or be careful ab what I say/do around them and I stopped seeing anyone for a while in 2019 tbh and then I started all over and found mostly good people and I don't know how to deal w them now so I just want to Flee and never see another doctor ever again lol

[chr0niciconic]

emailed my doc ab weird side effects + a potential med interaction and the nurse(?) called to make an appt and kinda dismissed some of my concerns w it and said my email was "too involved" whatever the hell that means and i do not want to go to my appt on Thursday at all and yes this is prob overreacting bc my doctor hasn't dismissed my feelings on this (yet) but I want to find another practice and just go there lol I rlly cannot take the slightest hint of disbelief/dismissal and it's not even from my doctor

[beaniebabyenjoyer-deactivated20]

hey happy pride specifically to disabled people, especially those of us who wish they could go to a pride celebration but can't. Whether it's not wheelchair accessible, it doesn't have enough places to sit, you're too immunocompromised to take the risk with covid, it's too loud or overstimulating, or any other reason. I see you. I love you. You deserve to be included and have your needs respected.

[dissociativedoe]

do nondisabled people realize how petrifying it is to know that you will walk into an event and most likely be the only visibly disabled person there?

the only one with a mobility aid, communication device, service/guide dog, physical deformity/difference, etc.... you dont even step foot in the door and you already stick out. EVERYBODY stares at you, even the nice, accepting people. are you an attention seeker or someone they should pity? you dont get to make that decision; they already decided the moment they saw you. are you going to be respected, babied, or insulted? or will they completely ignore you because talking to the cripple is too awkward? if youre there with somebody else, are people going to talk to them and ignore you, like youre not capable of interacting with them? is the venue even accessible, or do you get left behind as people move elsewhere? does anyone hang back to walk beside you, keep you company, or are you left to trail along behind them, alone? are you even included in what's going on? what is even the point of being there?

[theorangedead]

This is really important! Please call your reps to support if you can

New Bill Would Allow People with Disabilities to Earn & Save More Money

The bill raises SSI asset limits from $2,000 to $10,000 for individuals and from $3,000 to $20,000 for married couples.

[only-knives]

to those facing medical or psychiatric gaslighting: you are the expert on yourself. you are the only person on this planet who can decide if something is happening to you. this is your mind, body, and life. no one else has access to experiencing that but you. you can trust yourself. i believe in you and i am so sorry the people who say they're there to help and treat you are hurting you.

[deluxe-distrait]

Chronic pain when you are young sucks because there comes a point where you realise that no one else your age experiences this much pain or has to live their life around it. You realise that your older siblings could excel in school and hold up jobs fine and still have energy for things they love. You realise that your friends and peers don’t worry about how a certain activity might make them feel afterwards. You realise how few people complain about pain in everyday scenarios, where they’d otherwise have no reason to hurt. They don’t question wether tomorrow their bodies will lessen the constant pain, or try to guess where the pain will be next. No one else has the constant nagging, the way pain eats at your spirits and sucks your energy. It becomes horrifyingly clear that this is not something will pass so easily, because it has been this way for far too long. You are barely an adult, and already your plans for the future include notes such as finding a job with short hours to accommodate your lacklustre stamina. You are still in school and find that hiking through campus and between classes is a physical battle, not a simple walk. When someone asks how your day was, the defining factor for how good or bad it is entirely depends on your pain. Wether or not you agree to plans is not up to you, but your guess on how your body will cope.

That’s when it starts to hurt more than just your body.

[lifeafterpsychiatry]

I was talking about being afraid of people leaving me behind because I’m too sick, and my boyfriend just looked at me and said: “It’s my choice to be your boyfriend. It’s your friends choice to be your friends. You don’t have to understand it, but you have to respect our choice. Don’t try to make the decision of whether you’re worthy of people on their behalf because that’s not your decision to make.” I think that’s an important thing to remember. That whether we’re worthy of someone’s time and effort is something others can decide for themselves regardless of whether or not we agree with them. There’s a lot of peace in realizing that literally all you have to do is accept the love other people choose to throw your way. That you aren’t the one who gets to determine that you aren’t worthy of their love. That other people can choose to love you regardless of how you feel about yourself - and that you can learn to respect their choice even though you’re feeling unworthy.

[obstinaterixatrix]

tweet by @killdads:

One day I said out loud, “when we’re apart I think you must hate me, I picture you seeing my name when I text you and heaving this big sigh because I’m so annoying” and he quietly said “that’s a little mean. I wish you wouldn’t picture me that way” and something clicked

[chr0niciconic]

i am usually fine with being autistic and good at adapting enough to NT social patterns (though i wish i didn’t have to) but i just misconstrued/took too literally someone’s post/reply to a fairly Big Account on twt (which makes me nervous for w/e reason) and they replied not necessarily meanly but obviously not happy with me way and i feel ridiculous and embarrassed and sad! and will hearby turn off notifs and not go on twitter for a while 

[chr0niciconic]

my parents want to start the ssi process for me and oh man if it does not send me into a panic so if anyone has any tips or things you wish you knew before applying etc....pls lmk

[vicholas]

I don’t know if you’ve heard, but it has become a big conspiracy theory among teens in Tiktok the idea that Helen Keller was fraud that didn’t exist, and the main argument to back this is “how could someone be both blind and deaf and still be successful and write books”. That’s plain ableism. This entire thing is just deeply ableist and the fact that an ableist conspiracy theory like this can spread so easily among kids is just scary. 

Conspiracy theories, misinformation, fake news and bigotry are not a generational thing! It’s not a “boomer” thing, this is something that happens among all generations.

[astraskylark]

Manifesting this tomorrow

[ms-demeanor]

I saw a video talking about why schools shouldn't grade or assign homework the other day (interesting video! I support a lot of what the speaker was saying!) But at one point word searches were described as obvious busywork - what's the point in teaching kids to read diagonal words, after all?

Diagnosing dyslexia. Diagnosing dyslexia. Diagnosing dyslexia.

After going through IB classes in high school, after finishing my BA while working full time, after failing algebra with the same teacher two years in a row, there is no kind of homework that has ever made me cry so hard as word searches did in the 3rd grade.

If you've got a kid who has been working on a word search for an hour and is crying and telling you "the words aren't there," if you've got a kid who never knows what the pictures are in connect-the-dots because they can't connect the dots in the correct order, if you've got a kid who can't read analog clock faces after months of being taught how to read time, if you've got a kid who retranscribes all their music class handouts as letters because they can't wrap their head around reading music, I'm begging you to get your kid tested for dyslexia/dyscalculia.

And I'm begging you to get them tested before they learn how to mask so hard that it's difficult to get an official diagnosis because if they need disability accommodations in college they're going to need a diagnosis but they're going to be so good at masking their disorder that it's going to be difficult to prove that they need accommodations. And 'well if you can get by well enough that as an adult you can pass a test designed to diagnose children you must not need help' is bullshit because those tests don't make you do algebra or learn a new character set.

[live-love-laugh-lesbian]

Trans disabled people who can't bind are amazing, pass it on

[chr0niciconic]

i know it's important to talk about the after effects of covid and what that's like but it's also a trip to see what is largely how your body functions be shared as this horror story to make people care about covid again