#invisable disability

[tombraiderrocker]

If they claim they can cure your condition that you have been told is incurable, run. If they claim they cured themselves, run. If they claim they have cured everything from cancer to lupus holistically, run. If they claim you have to buy only supplements from them, run. If they claim they that only thing that will cure is x but x costs tons of money, run. If they refuse to run tests or address your diagnosed conditions before insisting you do an expensive treatment not covered by insurence, run. If they offer a one size fits all treatment/cure, run.

I have been scammed by "holistic" and "naturalistic" people before as a chronically ill person. In fact it was an actual doctor who went to medical school who scammed me for years. So watch out. If it seems too good to be true it probably is.

[samirasystole]

i don't really like the devide between the fandom on if al hashimi's breakdown is solely because of her disability or solely because of robby. it's a culmination of both at once, and these are deeply integral to the disabled experience.

you have al hashimi's disability worsening. the first and second time in well over a year; she's scared, worried, freaked out, and grieving the bit of health she did have. because her 'streak' is broken, and the seizures are back. if you have that happen to you, all the memories from when you were doing worse come flooding back. you get reminded of all the times you felt you weren't good enough, and feel it all crashing down. what if i can't work, what if i can't drive, what if i can't take care of myself?

it causes immense stress, because a disability can be a reason to not be able to work; her working as an attending for the last 12 years indicates that so far, it's been going well. to have that stolen from you on a day like this must feel like she's going insane. to feel unsure and unsafe in your own body when you are just starting out at a new job is incredibly anxiety inducing. you can tell in her facial expressions.

and the thing with robby is, he emulates everything that disabled people have had to deal with. some amount of compassion, but also entitlement to decide what she should or shouldn't do. she clearly has a plan laid out, neurology cleared her to work if she has double coverage, she knows how to make safe choices and how to communicate this. he dismisses it, he tells her it's his call, and threatens to report her if she doesn't do it herself. do you know what it feels like to have someone react like that to your disability? i know. i have felt that.

he has a responsibility for his patients, but like she also says; they are her patients, too. he does not have more authority over the department as she does in this moment, even if he thinks he does. it's simply not all about him. he's right in some ways but he's absolutely wrong to act like he gets to decide how capable she is. to have people immediately think you're incapable of even making a decision when you're disabled is a painful moment that many disabled people have had to deal with, including myself. people always seem to think that they know best. he is not her doctor.

especially her being a disabled woman of colour, and knowing the disatvantages that come with that; both the worsening of her situation and the way robby is treating it is basically her worst nightmare. she wants to tell admin herself, she wants to handle this because she's handled this all her life. no one else can or should. her plan is to tell the people who need to know; him being the first one. it's commendable, to say the least. he is clearly not doing well enough to respond in a truly empathetic manner, just wanting the machine that is the ed to keep running; with or without her. but he did say all of that, whether it was wrong or right. and that combined with the loss of control over her body? it's devastating.

it's one thing to feel like everything you've built is crumbling, it's another thing to have someone else tell you that you can't pick up the pieces. it amplifies the self doubt that people have tried baking into her all her life. you can tell that the words he said and all her existing fears are combining. because what if it doesn't work? it probably will, she probably will be okay. but the amount of times she was probably told she couldn't be a doctor. the doubt that she already had that was amplified by his words. the amount of times people have told her that she was incapable. it's all combining in that car. oh al hashimi, my al hashimi.

[chronicsymptomsyndrome]

"Am I the only one who prefers human relationships to money anymore" no shut the fuck up

people actually need money for

healthcare

mobility aids

transportation

medicine/equipment/supplies

coutless different kinds of therapy

clothes/stuff that make them feel good about thems like themselves at all

all the other things that allow them to comfortably leave the home and do things

a hospitable place to live where people can comfortably come over and spend time

Money and resources are (unfortunately) increasingly required to access and maintain meaningful human relationships in our world and I think that chasing the former to achieve the latter is the exact opposite of shallow. If you can’t understand that then you’ve probably never had relationships damaged or lost due to lack of personal resources.

[booksandbrainsandsoftthings]

Genuinely annoyed at how much more respectful people are of my SD, now that we have a counterbalance handle and light mobility gear. Why should her harness make her more acceptable than her vest??

Gear doesn't make the dog. Invisible disabilities exist. Any type of gear can be on a SD, even zero gear (in the US).

[ursecretheaven]

IF YOU DIDN’T KNOW - Article for able-bodied allies and disabled communities interactions.

i think most able-bodied people are confused about what the disabled community needs. They don’t take their (legally entitled) breaks because we need them more. They help their physically disabled coworkers lift things they can’t carry because they understand what we can and can’t do. My coworkers are so willing to help and support me they go above and beyond to make sure I keep my job.

I’m her to say:

this is not what we need right now.

If you are an able bodied person struggling to find what you can do i’m going to tell you point blank:

fight for the things you are meant to get and don’t.

fight for your breaks.

fight for your wage.

fight for your availability.

fight for your rights.

The moment you give up what you are legally entitled to is the moment you disconnect yourself from the disabled community. This is because:

The moment I have to fight for rights issued by legislation is also the moment that any accomodations that surpass legislation are ignored.

I think that most people in our generation understand that disabled people need more assistance with “day to day” living. Our generation understands the difference between equality and equity.

I’m here to tell you that the absolute MINIMUM that you are entitled to is what the law says. If you understand equity you know that it boils down to “some people need more and some people need less”. What I am saying is if you are someone earning minimum wage, it is exactly that! MINIMUM! So if you put your self on the equity scale of “more and less” you are getting the MINIMUM!!

If you are earning minimum wage you need to acknowledge that anyone earning less than you is so far below the poverty line that the government doesn’t even recognise them at all.

I want people to think of everyone that earns less than them. I want people to think why everyone earning less than them fits in a recognised minority ( e.g. queer, poc, neurodivergent/disabled, etc.). I want you to think about people who are part of more than one of these minorities.

I want people to understand why minorities need the legal entitlements most.

Whether you need to unmask for 10 minutes alone after helping people for 3 hours straight, or to sit down and rub anti-inflammatory into your joints (because without it you won’t be able to stay standing until your lunch break); the moment a minority has to explain why they need what they are LEGALLY ENTITLED to is the moment they can’t ask for anything else. It is the moment that you realise that you have to trade more pain for more money or less money for less pain. That is not a fair system. That is not a just system.

The moment you ignore your legal entitlements as a person, is the same moment you decide that anyone that can’t operate at the level you do is not a person at all.

So I urge you if you are able bodied:

You fight for your rights. I will fight for mine. In the end we want the same thing.

[lunalighting512]

having parents who "don't like to think of you as disabled" really fucking sucks

when I achieve something it's the autism. when I fuck up it's my fault. when I struggle with talking to people its me being a dick. when I struggle to socialise I am being lazy for not attempting to "overcome the autism".

I get PIP (Personal Independence Payment) which is used for a variety of reasons but I get it because of my disabilities. Because I am 16 and because my DWP payment was going to expire I applied by myself for PIP. keyword being "myself" for the first time in my life I was filling in a form about my disabilities from my perspective. even when my parents applied for my DWP they downplayed how bad my autism was as they wanted to give the image of a "normal boy" which means I have no idea what they put in all I know is that when I filed in the form again I got awarded PIP.

I also have an access card which mum applied for and thanks to some new rules the "difficulty with crowds" symbol has been removed from my card. Which means at some point I need to be on the phone explaining to them that my parents were dumbing down my struggles and that in fact I'm worse then they were originally told...

another issue with my PIP is that before it was going into my own account it went into my parents joint account meaning it was not being spent on me... it was mainly being spent on my sister. now it is in my account (which my dad had access to) he wants me to invest it all in Tesla... he has access to my account and keeps talking about about this.

I also need to "get a new brand image for collage", because I look "like one of those" in this instance anyone who is queer...

both of my parents are radfem and very very much think they are on the "right side of history"

so I'm stuck, I have PIP but can't use it, I can't come out, I'm both disabled and not disabled, and look "like one of those" even tho I only wear ETC branded T shirts and cargoes.

not exactly sure how to end this, I turn 17 in 3 months and college should be good I just need to escape

[endo-diaries]

life with a chronic illness is basically just going about with daily life then suddenly SYMPTOMS appear and remind you in the worst ways to take a damn break