#disability hearing
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Disability Hearing is August 6th
I have been in and out of a state of panic. Discombobulated and bubbling in a stew of dissociation for weeks. This looms over me like a ghastly specter, making everything I do, write, or say a thousand times more difficult.
The endless fog is an unpleasant place to be, and it's tendrils drag me into the darkness of the psyche far too often. It sometimes feels like the brain is on fire, burning with the searing memories of half-remembered trauma and the emotional onslaught of their legacy.
I must wheel myself before a judge, who will hear my tale and decide if I am worthy of receiving care or not. If they decide to not grant me disability, then I will have to start the process all over again. It has taken me four appeals over four years to get this far.
I will not be able to afford my home or food.
Everything hinges on this hearing. If I can get a good decision before the election, then there is hope. Small hope but hope nonetheless.
Because even if the US election goes badly, I at least will get enough to survive for a few months.
But I'll never be able to save again because until we fix Federal Disability, the $2000 asset limit means I'll be trapped in extreme poverty unable to ever pull myself out of it. We need to fix this, to adjust the payout of Disability and the asset limit to fit the costs of living for today, but we can't do that if the US election goes badly.
For my life, my ability to exist at all, to hinge on things so out of my control is terrifying and maddening.
May the odds be in my favor.
If you wish to drop kind messages to me, I would be grateful. Or if you like what I write, leave a kind comment.
Be safe all.
#disability#actually disabled#disabled#disability rights#disabilities#us federal disability#disability hearing#chronic illness#chronically ill#chronic pain#spoonie problems#self care#communities of care
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Disability hearing went weird today. They had an "expert" cardiologist who completely ignored my diagnoses and then proceeded to tell the judge he thought I had somatic symptom disorder.
I was literally sobbing by the end of his testimony and the judge practically booted him from the call as soon as was possible. I now have a psychological evaluation sometime in the next month.
My lawyer said the judge appeared to not be happy with the way the "expert" treated me and my health issues and that the so called "expert" had been super unprofessional and that all and all it might end up helping my case still. But damn talk about traumatizing as fuck. My friend had to calm me down after all was said and done, I was crying so hard.
#disabled#pots#actually disabled#disability#disabilities#pots syndrome#potsie#ableism#systematic ableism#disability hearing#medical trauma
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Goddamn, I knew vocational experts could say some outrageous things during disability hearings, but mine just listed 3 jobs and Gave Up ☠️
We were only on the second hypothetical and the judge went are there any jobs for this sick animal and the VE was just like "no, not in my opinion" like bruh ☠️
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I did it I did it I did it it's OVER 🎉 🎉
#221bluescarf.txt#didn't die#i can't believe it#i'm still alive i didn't drop dead#disability hearing
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collection of useful things tumblr has taught me:
even if you can't fall asleep, laying down with your eyes closed will still rest your body
you don't have to brush your teeth standing up
you don't have to do any chore standing up, from dishes to showering
you don't have to shower with the lights on
if you can't brush your teeth, flossing and a tongue scraper gets rid of plaque and bad breath
if you can't do that, mouthwash kills a lot of bacteria
eating "unhealthy" food is better than eating no food
you can make the same meal everyday for however long you still want it
some pills come in syrups or chewables if you can't swallow them
kids nutritional shakes can be a quick way to get fuel if you can't eat/don't have time
if walking hurts/exhausts you on a regular basis, canes and rollers are for you, no matter how young you are
we have free will—if doing something "out of the ordinary" makes life easier for you, do it
if you have even a dollar to spare, please consider donating to Alaikum's family.
they're a large family at only 10% of their goal to evacuate, and could use any help you can give!!
#these are just things I personally didn't consciously realize but are really helpful#or stuff that I don't think think we hear enough#disability#mental health#mental illness#encounter: demon
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#disability#ableism#disabled#meme#had a teacher who would always make this autistic girl feel stupid whenever she asked questions and would respond loud enough for the class#to hear the annoyance in her voice#catch on fire <3#greatest hits#10k#15k#20k#30k
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Sources:
https://www.washingtonpost.com/politics/2024/06/24/social-security-disability-benefits-jobs-list-outdated/
HAHAHA MICROFICHE MOUNTER MENTIONED
This is the job that the vocational expert said I could do at my disability hearing 😂😂😂😂
COOL. NOW FIX THE REST OF IT
#obsolete jobs#disability hearing#microfiche mounter#this is the job that the vocational expert said I could do at my ssdi hearing#disability#nonsense
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I don't know who needs to hear this but:
-"it only hurts a little" is still pain
-"I can ignore it" is still pain
-"I can cope with/manage it" is still pain
-"it's bearable" is still pain
-"I can push through it" is still pain
-"it doesn't hurt that much" is still pain
-"it doesn't stop me from doing x" is still pain
You don't need to be in agonizing pain to be in pain.
#it's me. I'm the one who needs to hear this#disabled#disability#chronic pain#chronic illness#spoonie#longlostposts
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You don't wish your disability was worse or more visible, you wish your disability was taken seriously. Please stop confusing the two, I guarantee you would not get the support you need JUST by being more severe or more visible. Please listen to visibly disabled people when we tell you it isn't better on our side
#m/cc#mine#I tried extremely hard to word this nicely because I KNOW people don't mean bad and often even know there are unique challenges#and believe me I know the challenges of invisible disability too!!#I have invisible disabilities!#but as someone who has also been at least visibly 'off' since they were 10 I am SO SICK of invisible disabilities being hailed as like#a unique extra oppression that us lucky visibly disabled people don't have to deal with#there are challenges to invisible disabilities that visibly disabled people DON'T have to deal with!#but you need to understand that *the reverse is also true*#there are MASSIVE benefits to being able to lie about your disability for example#or not dealing with the overt ableism that comes with your disability being obvious to everyone#*I do not have the option to pretend I'm not disabled.* that is never an option I have#I walk weirdly. I use a mobility aid now. my speech and face are 'off.' I lean to one side#for a long time I wore sunglasses 24/7 and often didn't make sense. I sometimes can't speak or won't react to others#for the most part people will always know that at the very least something is wrong with me#and more obviously I have people telling me they'll pray for me; telling me I can't do things I'm already in the process of doing;#wanting to shake my hand to tell me I'm an inspiration for not killing myself; giving me dirty looks for existing in public#and yes. I'm aware that this is very much an in-community issue. I know the average abled person doesn't know invisible disabilities exist#that's why there's so much awareness happening for it#but as a visibly disabled person I get SO TIRED of constantly hearing 'I wish my disability was visible :'('#it's just 'I wish I had your disability!' but from other disabled people
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I have been disassociating and feeling ill, so my writing has been a struggle to do and edit.
It sucks.
I'm still recovering from the disability hearing honestly.
I slowly started to write up what it was like, but I'm afraid to post it until after I get the decision. Because I'm afraid they're still monitoring everything I do. Since disabled people aren't allowed to have privacy.
#disability#disability hearing#disabled#actually disabled#the fact disabled people aren't allowed privacy in order to get any care and aid is horrific and ought to be a human rights violation#But then society doesn't treat us as people#it sucks
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psa: you actually are worth it. you are worth the trouble. you are not too much to put up with. your disability doesn’t make you unlovable. you’re not too much of a burden to “put up with”.
you are amazing and lovely and the right person will come and see just how wonderful of a person you are. your disability changes nothing about that
#i hope this is gonna help someone#it’s certainly something i need to hear so maybe someone else does too#chronic disability#chronic illness#chronically ill#chronicpain#chronic disease#disabled#chronic fatigue#chronic pain#disability#disabilties
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Today my therapist introduced me to a concept surrounding disability that she called "hLep".
[plain-text version of this post can be found under the cut]
Which is when you - in this case, you are a disabled person - ask someone for help ("I can't drink almond milk so can you get me some whole milk?", or "Please call Donna and ask her to pick up the car for me."), and they say yes, and then they do something that is not what you asked for but is what they think you should have asked for ("I know you said you wanted whole, but I got you skim milk because it's better for you!", "I didn't want to ruin Donna's day by asking her that, so I spent your money on an expensive towing service!") And then if you get annoyed at them for ignoring what you actually asked for - and often it has already happened repeatedly - they get angry because they "were just helping you! You should be grateful!!"
And my therapist pointed out that this is not "help", it's "hLep".
Sure, it looks like help; it kind of sounds like help too; and if it was adjusted just a little bit, it could be help. But it's not help. It's hLep.
At its best, it is patronizing and makes a person feel unvalued and un-listened-to. Always, it reinforces the false idea that disabled people can't be trusted with our own care. And at its worst, it results in disabled people losing our freedom and control over our lives, and also being unable to actually access what we need to survive.
So please, when a disabled person asks you for help on something, don't be a hLeper, be a helper! In other words: they know better than you what they need, and the best way you can honor the trust they've put in you is to believe that!
Also, I want to be very clear that the "getting angry at a disabled person's attempts to point out harmful behavior" part of this makes the whole thing WAY worse. Like it'd be one thing if my roommate bought me some passive-aggressive skim milk, but then they heard what I had to say, and they apologized and did better in the future - our relationship could bounce back from that. But it is very much another thing to have a crying shouting match with someone who is furious at you for saying something they did was ableist. Like, Christ, Jessica, remind me to never ask for your support ever again! You make me feel like if I asked you to call 911, you'd order a pizza because you know I'll feel better once I eat something!!
Edit: crediting my therapist by name with her permission - this term was coined by Nahime Aguirre Mtanous!
Edit again: I made an optional follow-up to this post after seeing the responses. Might help somebody. CW for me frankly talking about how dangerous hLep really is.
Plain-text version:
Today my therapist introduced me to a concept surrounding disability that she called "hLep".
Which is when you - in this case, you are a disabled person - ask someone for help ("I can't drink almond milk so can you get me some whole milk?", or "Please call Donna and ask her to pick up the car for me."), and they say yes, and then they do something that is not what you asked for but is what they think you should have asked for ("I know you said you wanted whole, but I got you skim milk because it's better for you!", "I didn't want to ruin Donna's day by asking her that, so I spent your money on an expensive towing service!") And then if you get annoyed at them for ignoring what you actually asked for - and often it has already happened repeatedly - they get angry because they "were just helping you! You should be grateful!!"
And my therapist pointed out that this is not "help", it's "hLep".
Sure, it looks like help; it kind of sounds like help too; and if it was adjusted just a little bit, it could be help. But it's not help. It's hLep.
At its best, it is patronizing and makes a person feel unvalued and un-listened-to. Always, it reinforces the false idea that disabled people can't be trusted with our own care. And at its worst, it results in disabled people losing our freedom and control over our lives, and also being unable to actually access what we need to survive.
So please, when a disabled person asks you for help on something, don't be a hLeper, be a helper! In other words: they know better than you what they need, and the best way you can honor the trust they've put in you is to believe that!
P.S. Also, I want to be very clear that the "getting angry at a disabled person's attempts to point out harmful behavior" part of this makes the whole thing WAY worse. Like it'd be one thing if my roommate bought me some passive-aggressive skim milk, but then they heard what I had to say, and they apologized and did better in the future - our relationship could bounce back from that. But it is very much another thing to have a crying shouting match with someone who is furious at you for saying something they did was ableist. Like, Christ, Jessica, remind me to never ask for your support ever again! You make me feel like if I asked you to call 911, you'd order a pizza because you know I'll feel better once I eat something!!
Edit: crediting my therapist by name with her permission - this term was coined by Nahime Aguirre Mtanous!
Edit again: I made an optional follow-up to this post after seeing the responses. Might help somebody. CW for me frankly talking about how dangerous hLep really is.
#hlep#original#mental health#my sympathies and empathies to anyone who has to rely on this kind of hlep to get what they need.#the people in my life who most need to see this post are my family but even if they did I sincerely doubt they would internalize it#i've tried to break thru to them so many times it makes my head hurt. so i am focusing on boundaries and on finding other forms of support#and this thing i learned today helps me validate those boundaries. the example with the milk was from my therapist.#the example with the towing company was a real thing that happened with my parents a few months ago while I was age 28. 28!#a full adult age! it is so infantilizing as a disabled adult to seek assistance and support from ableist parents.#they were real mad i was mad tho. and the spoons i spent trying to explain it were only the latest in a long line of#huge family-related spoon expenditures. distance and the ability to enforce boundaries helps. haven't talked to sisters for literally the#longest period of my whole life. people really believe that if they love you and try to help you they can do no wrong.#and those people are NOT great allies to the chronically sick folks in their lives.#you can adore someone and still fuck up and hurt them so bad. will your pride refuse to accept what you've done and lash out instead?#or will you have courage and be kind? will you learn and grow? all of us have prejudices and practices we are not yet aware of.#no one is pure. but will you be kind? will you be a good friend? will you grow? i hope i grow. i hope i always make the choice to grow.#i hope with every year i age i get better and better at making people feel the opposite of how my family's ableism has made me feel#i will see them seen and hear them heard and smile at their smiles. make them feel smart and held and strong.#just like i do now but even better! i am always learning better ways to be kind so i don't see why i would stop
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Friendly (or unfriendly if you're against this) reminder that this blog is supportive of ALL disorders. This blog does not think ANY disorder inherently makes someone a bad person, and is against any disorder being demonized. This blog wholeheartedly believes that a bad person having a disorder, yes, even if things that are also symptoms of their disorder are part of what caused harm, does not make the disorder a "bad" or "evil" disorder or excuse ableism and demonization directed towards the disorder.
Yes this includes personality disorders
Including npd and aspd
Yes this includes all psychotic disorders & disorders that cause psychotic symptoms
Yes this includes paraphilic disorders. All of them.
Yes this includes disorders that cause, or are even characterized by, attention seeking
Yes this includes disorders that directly have lying as a common symptom
Yes this includes dissociative disorders
Yes this includes any disorder with "gross" symptoms
Yes this includes physical disorders too
Yes this includes disorders that can cause loss of control of any kind- control of speech, control of body movement, etc.
Yes tis includes disorders that make someone "look scary"
This goes for literally any fucking disorder. There are not exceptions.
#disability activism#ableism#demonization#disability awareness#personality disorders#npd#aspd#psychotic#psychotic disorders#paraphilic disorder#attention seeking#pathological lying#dissociative disorder#idk what other tags to put#also additional note I literally have a couple disorders on this list#and symptoms of several too#so if you're thinking of trying to argue on this post just fuck off#I guarantee you will not change my mind#and I don't want to hear it either
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“alt text for more info” “turn on cations for more info” no actually this is not where more info goes. These have a very distinct purpose. There are plenty of other places for more info. If you’re going to make your post inaccessible, the least you could do is not use accessibility tools at your own leisure for whatever purpose you see fit.
#disability accessibility#accessibility#vision impaired#hearing impaired#hard of hearing#physical disability#sensory disability#disability accommodations#disability representation#disability advocacy#equitability#neurodiversity#adhd autistic#disabled things#alt text#captioning#subtitles#disability resources#accessibility tools
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Listen guys, you don't need to look nice to go outside. Your health is more important than appearances.
I just went on a walk in my pajamas, greasy hair in a shitty bun, acne, and a pair of new balance sneakers. Cars passed by and I said hi to everyone who passed. Did I feel self-conscious? Of course, but it was worth it.
Now I feel a lot better, because I didn't A. Overextend by forcing myself to shower/get dressed/put on concealer beforehand or B. Avoid doing anything because I felt like a mess.
Go outside and be however you are. It's not your job to look good to random strangers, you deserve to go outside.
#someone get me a cookie for walking with a migraine#i feel very brave#disability#disabled#hearing impaired#meniere's disease#chronic illness#hard of hearing#chronic disability#chronic pain#chronic migraine#chronically ill#invisible illness#illness mention#invisible disability#disability pride#blurb#exercise#accessibility
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I don't think a lot of people realize that lot of their advice to disabled people often boils down to "Get over it." they are trying to be helpful but their idea of helpful is "Just do the thing" because that's what they do. for them they just do things. It comes naturally to just do it.
They don't know how to bridge the gap between you and the task. For them the bridge is already pre-built and stable. For disabled people the bridge is run down, not well kept, it feels unsteady and is hard to get across without being slow and cautious - hell for some people there is no bridge and we need to build it ourselves but we don't have the bridge building tools and no one gives them to us.
"Just cross the bridge." They say before walking over their pre-built bridge. They never gave you the tools to build a bridge to cross.
#text#I hope this makes sense#disabled#neurodivergent#adhd#actually adhd#actuallyadhd#idk how to tag this post really i dont post a lot in disabled spaces...#by disability i mean all disabilities btw#i suffer from ADHD and chronic pain ad many other things#and all of them cause me problems that make it hard to 'just do it'#so hearing 'advice' that is just 'do the thing you're struggle to do' really gets on my nerves#especially when the people giving that 'advice' throw a hissy fit when i say that its unhelpful
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