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man sometimes friendship really is just "I saw this and knew it would give you psychic damage. please respond with agony" and then they do. and it's great
On Monday I've got a home visit appointment for an initial mobility assessment. It might lead into further appointments regarding physio and rehabilitation options, I hope so because a lot of things are difficult.
I was wondering if anyone has any advice? Even things that seem little would be appreciated! I'm quite nervous and want it to go as well as it can :')
hi hi, i'm also disabled and use a chair, and there are absolutely right and wrong ways to phrase things when you're getting evaluated. not to scare you, just to set you up for success to get the accommodations that you need :)
this blog, and specifically the idea of "The Magic Words" saved my goddamn life, and allowed me to actually get accommodations for the first time in my entire life, as someone who's been multiply disabled for years, but most of my conditions are variable:
Roselyn’s application got denied. A few months later she applied again and got approved. What changed?
The idea is that if they ask, "Can you do (X)," and your answer is any version of "Sometimes but it costs me," then your answer is actually no.
You have to reimagine the question the way that able bodied people actually mean it (even though they don't say this part): the question isn't just "can you literally physically do this thing even a single time, if the house was on fire and you would literally die if you didn't."
The question is actually, "Can you do this thing safely, sustainably, and consistently?"
For example, let's say your balance is poor and you struggle to navigate stairs safely. Even if you can technically physically climb a flight of stairs, if you're not stable enough to go up them alone with confidence, the right answer to, "Can you climb a flight of stairs?" is "Not safety if I'm alone, because of my balance issues."
Or, I have a friend with chronic fatigue who was talking to me about work, and he was like, "No, I can do it! I can take on that extra shift, as long as I don't plan anything for multiple days before and after."
And I'm like...friend. I love you. And also, the answer to "Can you handle an extra shift," needs to be "fuck NO."
Does that make sense? That if you can't Do The Thing without harm or risk to yourself, AND without needing to rest or compensate afterwards, AND without needing tools/help/strategies to do it, AND without having to plan your day around it, AND without having to give up other things to Do The Thing...then you Can't Actually Do The Thing. (for evaluation purposes, I mean.)
I apologize if you don't have a variable health condition since most of that won't apply. But I know with mobility aids, there tends to be a lot of grey area with how you get evaluated, so I just want everyone to have their best possible shot!
Here's an image from the blog post I linked that illustrates all of this well:
So yeah! If they ask you if you can do something, and you start your response with, "Yes, but -"
then the only thing they will hear is the "Yes." So you have to learn to start with, "No."
So you have to start saying, "No. Not without (condition worsening, symptoms flaring, etc.)"
Does that help at all?
My other advice is significantly less fun but definitely life-saving: spend some time tonight/ahead of time like journaling or reflecting, and specifically spend time getting honest with yourself about how bad things are for you.
I think when you're chronically ill or disabled, it's essential to basically Not Think About It the vast majority of the time, and I think that type of compartmentalization is super helpful. But you've got to be able to peel that back for health assessments, so now I take time to kind of connect with my limitations and journal and grieve ahead of time, so that I can be honest with both the assessor and myself about how bad things truly are.
Hope some of that is useful, and good luck! I wish you many useful and joyful mobility aids (my chair has changed my life!) 💜💜💜💜💜
If you have ME/CFS (which I think I remembered): The stress from this kind of appointment is a lot and can cause PEM for people with ME/CFS. Try to set boundaries like you normally would in your day to day pacing (that way people can guess your baseline better, too) and tell them beforehand that you will do so in order not to worsen your entire state.
If they don't know your specific disabilities, tell them important facts (for example how PEM works). For me, it was always helpful to have supporters with me that remember what happened or write protocol about it and help me notice when I need a break.
Otherwise, the ideas from the person above are very very important. Good luck!
frodo getting criticized for decades for not doing much / not being a hero compared to sam is fitting when you consider mental health and strength is often trivialized. frodo carried the most dangerous and insidious item in middle earth for YEARS. ancient beings (elves, gandalf, etc) were taunted and tempted by it. boromir was corrupted within weeks without even touching it. men and hobbits turned against their brethren for it. killed for it. and frodo, with a wound from a morgul knife, bore it’s weight when no one else could. had it been anyone else, middle earth would have fallen.
no, he couldn’t have done it without his samwise. but isn’t that a lesson in itself?
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washing dishes is evil because you go "oh fuck there's so many dishes this is gonna take foreverrr" and then you enter the dish abyss and emerge with your abdomen somehow covered in water and your hands all wrinky and then you look at the clock and what felt like half an hour was actually 10 minutes
free use is kind of a funny kink bc it relies on the idea that everybody wants to touch you and have sex with you but what if they don't. what if you tell everybody at the party you're free use but they all ignore you and mind their own business
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