You’ve been receiving benefits for a couple of years, and your regular “review” came and went. They probably made you fill out that dehumanizing form about what you are and aren’t able to do (which you need to answer as if you’re talking about your worst days; you’ll probably feel like you’re exaggerating if you do it right), and maybe they made you see one of the horrible state-paid doctors that are likely to minimize your disability, trick you into hurting your own case, and lie about what you said.
You hoped it was all over, but the letter came back saying that “your health has improved” and you are no longer disabled. You want to laugh – because your health has probably only declined – and cry, and scream, and you probably have thoughts of ending it all.
Don’t lose hope. You have a good chance of getting back on it. But you need to act now.
Before you do anything else, bring the letter to your local Social Security office and request an appeal. Check the box that says you want to stay on benefits while your appeal is processed. You must do this within 10 days of when they think you received the letter (which is probably earlier than when you actually received it). If the office is open when you get the letter, go now. If not, go the next business day. You cannot afford to put this off.
Give them the names and contact information of any medical providers you have seen since you filled out the disability review paperwork. Save a copy of all the paperwork from this visit in case they claim to have lost it.
The next step is to go to your local independent living center and ask for advice on your case. They may be able to recommend doctors and lawyers to help you win.
If there isn’t one in your area, or if they can’t recommend a lawyer, look for a disability lawyer here or contact your local legal aid.
From now on, your full-time job is winning your appeal. (I know you’re on disability because you can’t actually work a full-time job; that’s why this system ends up killing so many people. I hope you have friends or family to help you through this process.)
Go to as many appointments with doctors, psychologists, physical therapists, and whatever other medical providers apply in your case, as you can handle. Make sure to save their contact information, and whenever you go to a new one, go to the Social Security office and update your paperwork with their information.
Stay in regular contact with your caseworker at the state disability determination office; their name should be printed on the denial letter you got. Ask them if they need more information. Being in contact with them might actually convince them not to “oops, mysteriously lose” your paperwork or mix you up with someone else (yes, this does actually happen).
If you’re lucky, you won’t have to go to a hearing at all, and they’ll reinstate you after a reconsideration. If you’re not so lucky, you’ll have to go through several stages of hearings. The odds are in your favor at these hearings. Don’t lose hope. They need to prove that you have medically improved enough to go back to work, which you haven’t.
Yay, you’ve been reinstated! What do you do now? Well, this has probably caused a hiccup in your Medicare. Even though you checked the box that said you wanted to continue your benefits, something probably got screwed up. If you’re on SSI, they’re probably deducting the Medicare premiums from the months you were considered “not disabled” from your checks even though SSI recipients are supposed to have their Medicare paid for. Your state SSI supplement might also be screwed up. Your Social Security office will tell you who you need to call/visit to expedite this being straightened out. Medicare may also have refused to cover doctors’ visits from the time you were considered “not disabled” and you’ll have to call or write them to appeal that.
Good luck, may everything work out in your favor, and may your next review go off without a hitch.
Tag: disability
Over time, I internalized others’ beliefs about me – that “there was nothing wrong with me”, that I only needed to try harder, that if I really wanted to do things differently I could. In order to deal with each of these premises, I had to develop an interpretation of them, to translate them into something I could (at least partly) understand, and then turn into my beliefs about myself.
So “there is nothing wrong with me” became this: “Don’t ask for help, because I’m not supposed to need any. Besides, if anyone looked really closely and still didn’t find anything wrong, all of this really would be my fault. It’s better just to have a small hope than to risk actually finding out.”
And “all I need to do is to try harder” became “The other people around me are succeeding while I am not, and it must be as hard for them as it is for me. So I am never to complain about difficulty or physical discomfort. If anything is physically at all possible to bear, it should be borne in silence.”
Finally, “if I really wanted to change, I could” evolved into “I am deliberately resisting having my life, and the lives of those around me, be any better. I don’t know why this is. But everyone feels this way, and they can’t be wrong because look who they are and how many of them are saying it.” In other words, I was deliberately making the people around me upset and angry.
Trying to function under these self-imposed guidelines was difficult. It was like trying to build a house on swampy ground which could not support any weight despite looking all right at first glance, or like trying to ice skate on a pond which in many spots was barely frozen over. In each of these cases, the surface impression does not at all reflect what lies beneath, or the fragility of what is seen. And those around me built their houses, or skated on their ponds, and could not understand why I was having so much trouble. And neither could I. My self-esteem was very low, and more than anything else, I was ashamed of my self. Of my being. Of my entire life.
Dave Spicer, Autistic and Undiagnosed: My Cautionary Tale (This presentation was given at the Asperger Syndrome conference held in Västerås, Sweden on March 12-13, 1998.)
I was reminded of this one again, with the other piece I just reblogged a quote from.
And the other bit from the same piece I had to add on:
You are avoiding the subject, the therapists say, over and over, you only want to talk about dogs and not your real issues. Why do you have such a problem with authority? Why are you so rude on purpose? Why do you like making people mad? Your whole family is in a shambles and it is all your fault.
(Plus the “We were drugged. Oh, we were drugged to the heavens…” Ouch.)
“[L]ook who they are and how many of them are saying it”, indeed. 😐
Of course my thoughts went back around to some of the observations on misdiagnosis and self-diagnosis.
Whatever else may be happening in my life these days? At least I’m not regularly getting a bunch of harmful assumptions like that pushed at me anymore. And I am at least somewhat able to see that most of those assumptions were terrible, no matter how many people would rather believe what’s going on would be “fixable” if the person were only pushed to try harder. That is a definite good.
Even if, you know, too many other people wouldn’t see it that way. That’s an easier story for them. And they’re often the ones in positions to do real harm.
It just gets overwhelming sometimes. Especially with how many people do wind up on the sharp end of assumptions like that–and don’t always have the same chances to get enough distance to figure out that nobody deserves that. Much less that, no, the assumptions aren’t necessarily right, no matter who all they’re coming from.
(via clatterbane)
I’ve just had too many people want to assume that I was being malicious, when they didn’t understand what was going on. And I didn’t either, at least half the time
What I mean when I say “I can’t do that”- Anxiety Version:
- I am unable to do that
- I am too stressed out to do that
- I cannot face the humiliation of attempting to do that
- My body will physically not allow me to do that
- I am on the verge of a panic attack
- I cannot do that
What people hear:
- I am unwilling to do that
- I am just shy
- I am overreacting
- I am lazy
- I need to get more experience in social situation to help my anxiety
- I need a push
- I don’t want to do that
Never hit reblog so fast in my life
Also, it can mean “doing that is technically possible for me, but would take an embarrasing (to me) amount of time and be exceedingly difficult, so I’m setting boundaries.” It’s okay to refuse to do things that are painful even when they’re technically possible.
So now I want some kind of cornbread, and we have no meal at all. I know the Tesco location our deliveries come from has the good Iwisa stuff (“Super Maize Meal”!) , besides some Jamaican brand I don’t risk buying anymore after getting glutened off one bag. But, for some reason, it doesn’t show up in the online ordering at all.
Guess I’d better either get Mr. C to stop for some, or order it somewhere else. But, neither one is likely to happen today.
It’s also kind of funny that I can recognize which nearby branch both they and Sainsbury’s are sending stuff from, by some of the other item availability. Can’t tell where I was shopping a lot when I could still regularly get out to do it in person 😉
do u ever feel like you’ve accidentally tricked certain people into thinking you are smarter and have more potential than you actually do and do you ever think about how disappointed they’ll be when you inevitably crash and burn
Fun fact: Impostor Syndrome is ridiculously common among high-achievers, particularly women. If you identify with this post, odds are pretty good that you’re exactly as smart as people think you are, and the failure you’re afraid of isn’t inevitable at all.
and don’t forget this is one of the psychological barriers placed in by thousands years of patriarchy and male supremacy.
My computer science professor actually talked about this on the first day, it was really cool.
Funbrutal fact: in addition to the existence of imposter syndrome, being “twice exceptional” (also known as 2e) is also a thing. That means being intellectually gifted AND ALSO having a disability that affects your ability to succeed at study or work. Such as ADHD, autism, dyslexia, dyscalculia, etc etc etc. A lot of people believe that it’s not possible to be both, but it very much is.Society tends to have very high expectations for how well gifted people will perform. Society tends to have low expectations for how well disabled people will perform. Society tends to attribute invisible disabilities, including mental illness, to a failure of willpower or effort or a bad attitude.
So if you read this post and went “no, but seriously, this is not just low self esteem on my part, people keep thinking I’m smart and then I keep crashing and burning and disappointing them and they can’t understand why I didn’t live up to their expectations, it happens again and again and when I tell someone how I feel and ask for help, they just tell me to stop being so hard on myself and that I’ll succeed if I have more self-confidence,” it is not just you.
(Also, one of the previous posts in this thread buried the lede a little. Imposter syndrome is ridiculously common in people from underrepresented groups in academia and other high pressure/high status fields, particularly women and people of colour. Maya Angelou did not only feel out of place because she was a woman.)
This essay also totally changed my view on the intersection of impostor syndrome and mental illness.
What We Get Wrong When We Discuss The Value Of Immigrants And Refugees
ableism:
you can reserve a space on the train for your bicycle in the default online booking form.
to get a wheelchair space, i have to book the ticket then exchange several emails with the railway company, as if the concept of wheelchairs is entirely new to them. sometimes there’s no email address and they try to insist i call them, which is inaccessible to so many people. then they demand i show up half an hour early, at which point they typically act as if they’ve never heard of you or they have a wheelchair ready because no one told them i have my own. when i arrive at my destination, i cross my fingers that anyone has bothered to call ahead for someone to get the ramp out, and usually have to resort to asking another passenger to flag down a member of staff. i leave long after all the other passengers and crew. and don’t even get me started on airplanes.
now apply this principle to literally everything.
oh and the only reason i have to do any of this is because they didn’t build the trains to be level with the platforms. i only need their “assistance” (literally just a ramp) because they didn’t factor me in in the first place. all that effort, MY effort, for “help” i shouldn’t need.
being disabled is so much WORK. contacting everywhere you might go in advance to find out if it’s accessible, then you get there and “oh there’s just a few steps” or you have to call them on some number so they can get the one guy who has the key to the rickety elevator but oh wait he’s on vacation, or they’re using the disabled toilet as a storage closet. everything i do comes with layers of effort that abled people can’t even imagine (i know, i used to be one).
now bear in mind that on a good day i have like 25% of the energy of an average person my age. i need most of that to, you know, eat and so forth. so having to spend half my energy dealing with this type of bullshit renders so much of the world inaccessible to me, because i often physically cannot jump through all these fucking hoops to like… enter a building or get on a train.
Well, that was handy. I finally got a grocery order in, and there were still a few delivery slots open this evening! (ETA: Actually went with Tesco over Sainsbury’s this time because of that.)
I was expecting to have to wait for tomorrow, at the very least. It cost like £2 more than some of the slots then, but more than worth it if I can avoid going out after a couple of things today. Plus get more GF bread, which I ran out of again. Needed to stock up on some staples anyway, so may as well get more good out of that higher delivery charge 🙄
But yeah, probably ought to remember to place orders more often. Definitely worth the extra £5-8 not to have to lug it home on the bus myself, anyway, even if that were less of a problem these days.
Kenguru is a tiny electric hatchback for wheelchair users
By Ellis Hamburger, theverge.comKenguru’s electric car has no seats, and you drive it by putting your hands on motorcycle-style handlebars. It’s built for wheelchair users, who can roll right through the rear hatch of the car into the driver’s area. The Austin-based…
THIS IS SO COOL.
fucking amazing wow
NO BUT DO YOU UNDERSTAND HOW GREAT THIS IS? DO YOU REALLY? PEOPLE IN WHEELCHAIRS CAN HAVE SMALL CARS NOW, THEY DON’T HAVE TO RELY ON EXPENSIVE LIFTS TO HELP GET THEM INTO CARS, THEY DON’T HAVE TO MODIFY THEIR CARS FOR THEIR NEEDS BECAUSE THE CAR IS ALREADY DESIGNED SPECIFICALLY FOR THEM. THIS IS ACTUALLY SO GREAT AND IT GIVES SO MANY PEOPLE THE OPPORTUNITY TO BE MORE INDEPENDENT AND IT MAKES ME SO HAPPY!
Have I reblogged this already? Don’t care.
Also for those worried about prices: it’s about $25,000 when it comes out, so about the price of a mid-sized car. And there might be grants for it.
Not to be a downer about this… because it’s a step in the right direction but I already see 2 major issues with a vehicle like this.
1. There is absolutely no cargo space… like for anything at all. On their website, they reference that something like this would be great for trips to the grocery store. Okay great… except where do the groceries go? I mean there isn’t even space for a small shop let alone a weekly or monthly shop at the grocery store.
2. There isn’t any room for a passenger, even just 1 passenger. People in wheelchairs have friends, family, etc.
For a vehicle that will cost approx 25 grand and only go about 25 mph, so you’re limited to surface streets – again okay for a quick trip to the grocery store or your local doctor but… I’m not sure how much it would be worth the investment, especially on a fixed income.
Urocyon's Jaunts 2.0 
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