#being disabled

[disast3rtransp0rt]

This is what being disabled is like, though. This is a funny metaphor for a horrifying reality: Disabled needs and/or direct communication from the person being 'aided' are often overlooked.

I might need a home health aid someday and the fear of not knowing whether a stranger might seriously fuck up something in my home or my body because they're over-confident/used to ignoring directions in the name of ease... ugh. This ISN'T funny in the long run. This is scary. This is dangerous.

Sorry but it was too complicated to leave in the tags.

Text recounting of the full events below but oh my god please watch this person explain the wildest thing happening to them

[image text]r/trueoffmychest post by CptnSpaceCase

Today my aide cooked what should not be cooked

I have to get this out, because today feels like an actual nightmare I keep expecting to wake up from.

I'm disabled, and need help with stuff around the house. Today was the second day with a new agency and new home health aide, "Tina." I set it up so she would come by in the morning while I'm sleeping (insomnia is killer), and I texted her last night what I would need done today.

One of those things was to roast some precut squash I'd gotten so I could have it with my salads and pasta. I was very clear in my instructions: what it looked like, where it was in the fridge, how to use the oven, how to cook it. I also have a roommate who was up and told her she could ask them for help if she couldn't find anything. Or come get me if truly necessary.

Now, I have three pet ball pythons. They eat rats that I thaw from frozen in the fridge in a reusable plastic bag. Yes, that's where I'm going with this.

Tina couldn't find the squash, and so, obviously, that meant she should roast the first other thing she could see that was technically also encased in plastic, in a completely different area of the fridge. The FUCKING RATS. In butter and salt, in my nice baking dish.

And like, that's insane all on its own, but if you're going to cook any animal, you should at least clean and skin it first, right??? Like, do the crazy, disgusting thing properly so I can respect the effort, instead of sticking them in as is. Fur and guts and all.

And the smell. Good God baby Jesus the SMELL. It woke me up and had me gagging the moment I opened my bedroom door. Definitely not squash. Or food-smelling for that matter. At first I thought the squash had spontaneously rotted overnight and she'd tried to cook it anyway. That would have been slightly less insane and much preferable.

I had to pull it out of her what she was cooking instead when she said she couldn't find it (it was in plain sight), had to open the oven and see my snakes' dinners in place of my own and still couldn't process what the fuck was happening, what I was looking at and smelling. I don't like yelling at people and generally avoid it. Today was a day for exceptions. And at the end of my half-crazed, dissociative rant, I told her to get the whole dish and its contents and herself out of the fucking house. And to not come back.

Suffice to say, I've contacted the agency to report it and am requesting a new aide. Now I'm sitting at a cafe trying to calm down and eat something despite the scent memory that's taken up permanent residence and turning my stomach. The whole house reeks like musty, sewage-dipped pork that had been left out for a whole day before being cooked in rancid oil, and I'm not sure Febreeze is gonna cut it. I don't want to go home. 🫠😭

[adragoncalledcat]

The child athlete to chronically ill/disabled pipeline is NOT for the faint of heart

[brightlotusmoon]

[franknfurterstriangulardinosaur]

hating your disability and being proud you’re disabled aren’t opposites; these things can be simultaneous. of course, i’m not best mates with my cerebral palsy; this shit has put me through worst things than my exes. but i’m not disappointed im disabled; im not going to shut up about being disabled; im not sobbing at night because im a cripple. that’s what i am. maybe it took a while to get used to but i love being disabled as much as i hate the symptoms. also these two are not the only two options on how to feel about your disability and all of you need to stop policing how cripples feel about our own things, thank you very much!

[manyminded]

hey. I dunno who needs to hear this today. but

you are not wrong for getting better. You are not betraying our community. you are not a bad person for trying to prevent others from falling into it. you are not hurting anyone by easing the pain for yourself.

disability is a hard, hard thing. being able to climb up to feeling better, tooth and nail, is an incredibly difficult process. but abled people tend to forget that there is a community here. there is a home to this pain. it has shaped us and our lives. our identities might be forever impacted by that.

you are not forgoing that by healing. it’s okay to get better. it’s okay to work towards being better. you are not betraying, forgetting, or abandoning us. it can be hard not to target yourself or others about this ‘crime,’ but I want you to know that it’s okay.

I believe in you.

[frightfully-doll]

I am SO fucking tired of the ER not listening to me.

I’ve been there twice. TWICE. They are refusing to see that there’s an issue, only because of my anxiety. They’ve treated me like complete shit. I don’t have anyone for support, I am all on my own. Being disabled, chronically ill, currently VERY sick with a bad infection that even the strongest pain killer won’t help and in the middle of a panic attack because your dentist completely screwed you over and gave you cellulitis is so fucking stressful.

Darlings, we have to come together and fight to be seen, heard, and taken care of. This is absolutely unacceptable. My insurance is taking CENTURIES to approval a 2nd CT scan. And again, the ER was a complete joke. I can’t afford this. I make $0.00 a year, because even though I have a spinal disability, a leaking heart valve, very weakened immune system, a deformed left hip that has greatly affected my ability to walk, POTS, & severe GI issues, I do not qualify for disability. I spend every single day bawling in pain with no sleep. The stress of being ill and contracting cellulitis , which is SEVERELY painful , has greatly taken a toll on my body. I’ve been on several different medications, nothing and I mean nothing is helping me. And the fun part - one of my meds gave me a stomach ulcer. So now my stomach, which already has extreme issues, is in severe pain too.

I am begging for this world to start recognizing young adult disabled people who are struggling to get treatment, and who are constantly manipulated by people who are supposed to help. I cannot stop crying. Please help us.

[nightbotten]

I'm in red state and I'm disable, same sex loving female. I don't know what to do.

I was born disable I will always be disable cause of my terminal disease.

I always been counting my days cause I been caring the weight of not wakening up seen I was young and fuck I'm scared of death.

I have my reason to move like how I deserve to live the little time I have left with my love and family.

So please any information, any programs, any sources send to my dm, leave a comment, or leave a like push this to other people so they can help cause I need the help

Everyone

Need

Your

Help

Cause not everyone have the funds to move, not everyone have the support as you. Most of us didn't even know were to even go then where to start so please.

PLEASE

Give me information give me options and I'll maybe be able to keep my love an family safe even when I shouldn't be the one to do so.

[leo-fie]

I'm trying to sort out my own internalized fatphobia. Some of it is easy, because I'm also disabled and try to think in the "getting disabled" mindset (I'm not the problem, the infrastructure that didn't think of people like me is). It's a pun in German, because disability and obstruction are the same word (Behinderung), so you could "behindert sein" (having a disability) or "behindert werden" (something obstructs you).

The fact that fat people are simply not thought of by for examble furniture companies who make their chairs too narrow is therefore a simple logical step for me.

But am I fatphobic if I'm still annoyed, sometimes even disgusted with my own body for being fat? It's summer, which means I'm sweaty 24/7 now. The sweat accumulates in my rolls. My vulva is a hotbet because of my inner thigh lipomas. I get pimples and cysts and boils. I can only wear pants at least knee lengths, because my naked thighs rubbing against one another hurts so bad.

(I understand that this is sexy for a subsection of this very website. I appreciate you guys, but I'm ace, so no thank you.)

My life would actually be better off if I wasn't fat. Is this thought fatphobic? Or is the specific grievance with thigh lipomas something else kind of?

[the-withering-system]

Omg we got an electric scooter for free! Like the scooters disabled people use and I'm so happy.

This is going to give us so much more freedom! We'll be able to go get our meds ourselves and shop ourselves!

[joifee]

gonna finish up this one fanart for tomorrow and then probably do a short art break

for health, both mentally and physically. I have been very worried and stressed about a lot of stuff recently and being put on oxygen because my blood is bad was like a cruel wake up call for that.

theres a potential scary outcome to this but i still have to wait for a doctors call and i cannot concentrate on arting if i feel anxious about a call that already is two days late

[choixsimple]

Me about once a month: "What if I'm over exaggerating my disabilities? I should just get up and do a 30 minute treadmill session and then cook dinner from scratch! It will be good!"

Me, the day after, without fail: "Oh my god my joints. Oh my god the fatigue. Why do I feel so awful? Perhaps because I have a connective tissue disorder and a fatigue disorder? Hmmmmmmm much to think about"

[daffythefox]

me: ugh i hate having my disability(ies), I want to do so many more things that I can't do

other ppl: you know doing stuff doesn't equate to your moral worth, you don't have to be doing stuff all the time

me: no you understand I want to do more stuff! I don't feel guilty or inadequate, I just want to make more things! I want more time to spend on my hobbies!!

[laputaindefrenchgirl]

anything, for me.

2023 is almost finished, and it feels like this year was the first chapter of my life. All the unknown emotions that came crashing onto my self that I could not have expected.

These days, some truth was revealed to my conscious being. I am dissociating emotions from the touch, as a sense. When people touch me, I feel almost nothing. I've been doing that for more than two decades now, out of protection and survival.

It is so fucking confusing.

After a decade out of deeming myself worthy of being called sensitive and wise, now, after seeing people as they are, embracing life like a bloody seer, now I have to realize that I do not know what to feel when people touch me.

Platonically or sexually. I don't know what I should feel. Like, what do I even like? I kept myself safely hidden, at some reasonable distance from everyone. But Gods, do I love, do I care, do I feel everything. But not through anyone's touch.

To unthread this thread is so weird. What is tenderness and desire in a touch? Disgust, fear and love? I'm not a hugger, except when my friends are drunks.

When I was doing therapy (EMDR, that shit is extraordinary), this question came up. Why can't I feel when people are touching me? It's always so cold, like medical. And that is alright, I guess as until now, it was. Now I'm wondering why.

So, we dove into my past. The violence my body went through. Even as I'm writing this, I can still hear my voice pleading, "You were not raped, you were not beaten!" and that is true. But to move on from this void, I will need to accept that violence is still violence, even more in the name of Science.

Their hands choking my throat while they applied plaster on my body, tears in my eyes, I couldn't breath. The way their shear cut the skin of my back deeply instead of the plaster. The blood, and vomit, everywhere. When I begged to have anesthetic before they cut my skins for exams, but told me "no" because it would disturb the results (fuck the results).

I was two, four, nine, fifteen... I was a good soldier, still am by the way. I took these blows because no one told me it wasn't okay. I only knew this, and still found within my youngest self the light which made me magical.

Consent.

The way some people grab me, to show their power over me, it is probably the thing that I went through that disgusts me the most. He kisses me, caresses me, as if it was friendly and consented. It is not because you disrespected me, and that I said NO. For that, there will be no excuse, never a fucking single one. I scream inside like a wounded animal at that thought.

Once, a physical therapist told me to bend on my knees to show her my back. I complied, because she's an adult, right. I was seven. Then she raised my tee shirt and then, lots of hands touched me without asking me, the skin of my back. I remember the strokes and the humiliation. I didn't know who they were, didn't see their faces, but to this day, I still wonder, why?

This is a beginning. I'm headed in the direction of the answers I'm seeking. I dissociated to not feel these strangers, and my own revulsion.

Also, eerily, it fits the imagery I created much later, of my own mythology. I'm a sculpture people touch and seek answers from. Leaving me with nothing but my own questions.

If my soul chose that path, that life, then why does it feel like as if I'm forever stuck between feeling like a burden and my inner god's complex? I love romance but not the pathetic thoughts that echo confusion. I deserve(d) so much better.

I wish to live a touch that feels reciprocated and not forced. I wish to not want to control everything in order to feel safe. I wish that I went through all my life did not damage my vision of myself, as a woman. I wish that my teenage self realized that she could trust others. Yes, pushing people away is easier, even when you're constantly smiling, but there's more. I know that now. I wish that I will come to become tender without fearing rejection, someday.

Thank you. 2024, here you are. Show the way. I will lead, obviously.

-Audrey

[brightlotusmoon]

A friend from the cerebral palsy support group who has spastic diplegia is slowly losing mobility in both legs as she nears age 30. This can happen. She is incredibly frustrated that nobody is talking her seriously about using a wheelchair more full time. It's heartbreaking.

You know your own body, you can feel the weakness progressing. This isn't a "mild" case like me, this young woman is actively breaking down and needs more support. She doesn't want to walk and that should be taken seriously.

But she's "so young" and she "can walk with canes or crutches or a walker" except even short distances have become painful. And it's not like they wouldn't give her the opportunity to get a chair. Her family and her own doctors keep insisting she should walk.

All I can do is be supportive through cyberspace.

[franknfurterstriangulardinosaur]

i’m so excited to get a new wheelchair so this is a wheelchair user reassurance and appreciation post.

- I love you Paralysed Wheelchair users

- I love you Semi-Paralysed Wheelchair users

- I love you ambulatory Wheelchair users

- I love you people who use their Wheelchairs because it hurts to put pressure on their legson

- I love you people who use a wheelchair because they faint

- I love you people who decorate their wheelchair

- I love you self-propelled wheelchair users

- I love you electric wheelchair users

- I love you Attendant wheelchair users

- You’re allowed to use your wheelchair however you want

- You’re allowed to have fun with your wheelchair

- You’re allowed to use which one you think is bestto

- You are all loved

[bluejay73ffs]

It baffles my mind that so many people are just like, "There's this thing that millions of people around the globe experience and have experienced all throughout human history, but I don't experience it, and I've never done any research on it, nor have I ever tried to understand it in any way, so it must mean that that experience isn't actually real and the people who are experiencing it are just wrong about their own lives." Like, there's being close-minded, then there's whatever the fuck this stupid-ass mindset is.