/ot/ - off-topic

I talked a bit about disability in the ASD thread. It's difficult to navigate life now and my trust in medical authority is non existent. I stay far away from disability communities with their endless squawking about the lexicon. Hope to see more nonnas chime in on their experiences because most seem level headed.

I'm not diagnosed but I fully believe I have dyspraxia (problems with movement and co-ordination). When I read the symptom list I checked so many boxes and it explained so much about my life especially childhood.

I have dyspraxia (hi >>1114140 nonna! hmu if you need something) and ehlers danlos. It made my school life a living hell but in my country disability aids are shit, basically you're either in a wheelchair or bedridden or you don't qualify for anything over 200 euros out of pity, so it's better I just cope and pretend to be normal rip
I can't do most stuff, I can't even tie my shoes or do my bed, read it as I do that but very badly, and when I cook or work I breakdown everything to single microtasks or I'll be doomed. Other than that, my ehlers affects me to the point I can't sit still without feeling my bones with a pulling sensation so I always have to sit with my legs crossed and ThaT's UnProfesSionAL!!! also I bruise super easily and need to crack my back every two minutes.
My teachers back in the days believed I was hyperactive or just bratty and made me almost constricted to my chair, it was a living hell because with my dyxpraxia I couldn't concentrate due to the discomfort.

I’m partially blind and fear I’m losing what little eyesight I have left.

>>1115377
Don’t worry anon, I’ll come to your house and read /ot/ threads out loud to you.

>>1115377
I'm so sorry anon

Bumping this. Any anons have trouble with making friends? Seems when I try and reach out to anyone and do the reveal I'm disabled I get ghosted. It would be nice to have something like a disabled friend finder app but I know gross fetishists exist out there too

Unfortunately deafness runs in my family so I'm expecting having to pay for hearing-aids when I'm in my forties. Not sure if its a disability but I also have tinitus since I was kid.
I'm also wall-eyed with slightly blurry vision in one eye and have been so since I was a child but my parents never got it fixed so now I have to pay out the ass for surgery to get it fixed. Growing up has pretty much been hell for me as you can imagine. Certainly didn't help that I was chubby on top of it. I mainly had a few people that tolerated me me being around them but none who would call me their friend. I was always the odd one out in any given group. This went for both school and family gatherings. Socializing is still hell for me so I've relegated myself to working late nights and being a perpetual homebody.
A big issue that comes with this are perception problems (look up the depth perception test, one finger is always blurry for me.) It's what I mainly attribute this as the reason that its taken me longer than usual to learn how to drive especially when compared to my siblings. I was able to get tbe hang of it eventually and I wear glasses to help with the visual blur but I always have that fear that I might screw up because of failing to judge distance accurately. Turns out I hate driving. Thing is though, I live in a car centric city with shit transportion so I dont have much of a choice here.

Jill of all inspired me to get one of these because I actually need one kek. I guess they are mostly used in airports but figure it might help in some public areas, though I hate to look like a munchie. I used up all the icons instead of decorating it with sunflowers at least

Hypothetically, how easy would it be to learn American Sign language through Youtube or something similar?

>>1155442
Do you mean online or IRL? I wouldn't mind to befriend someone disabled either way, it's incredibly ugly of them to ghost you because of something you can't control.

>>1155652
I think it's pretty feasible! Like any language I think. You should also go out and try to join like a group so you can interact with people who actually use the language.

>>1155652
I’d guess it’s easier than most languages. ASL has a fraction of the vocabulary of spoken languages (~6000 vs 180000 for English) and much simpler grammar.

>>1155605
I hope this works for you anon, but the fact that they call their company a “scheme” is really funny to me.

Any Deaf or Hard of Hearing anons here? I have congenital cookie bite and I wear hearing aids. I'm mainly tired of people not believing that I have hearing loss because I'm fairly young (even though I have BRIGHT PINK earmolds). Also worried about the fact that I'll be profoundly deaf by the time I'm 50 apparently kek. Hopefully cochlear implants will be improved dramatically by then, I'm not sure I'd really ever get adjusted to the robotic sound of them.

Since we have anons here who are hard of hearing, what are your opinions on parents refusing cochlear implants for their kids because they want to keep them as a part of "deaf culture"? While I understand where those parents are coming from it still always sounded weird as hell to me so maybe someone who's actually more immersed in the topic could offer insight.

>>1155678
I should clarify I meant online. My disability leaves me mostly housebound so I can't really meet people in person. They lose interest pretty quickly when they learn this. Gotta learn not everyone is as cool with text communication as I am but it still sucks and I feel pretty lonely

I use this website. How disabled am I?

What are nonnies' opinions on the ethics of raising a disabled child and the uprise of disability instagram mommies, such as some of the ones on /snow/?
And with the recent news of Roe v Wade, what do you think about the ethics of abortion for disabled fetuses?
Spoiling picrel just in case

>>1166630
It should be mother's choice because some people can't raise disabled children, mainly because of economic reasons.

>>1166630
Aborting disabled fetuses isn't any different from aborting a non-disabled one. Fetuses aren't people and don't get disability benefits. If the mother doesn't want to carry said fetus to term regardless of her reasoning, that's her decision and shouldn't be restricted.

>>1159757
Sage for sperg. I'm the hard of hearing anon above you, and honestly I'm neutral about it. I don't know too much shit about deaf culture (I went to a normie school instead of a deaf school, and I don't sign at all) but from what I've heard, deaf people reject them because they don't want to be "cured" and they've fully accepted their disability. The deaf community is really like a supportive family, especially here in America, and I can see why parents would want their children to grow up in a culture surrounded by love and acceptance. From a linguistic standpoint, they're also trying to preserve ASL and their regional dialects as much as they can because more implants = less people signing
>weird as hell
I've always thought that too. What if the child grows up deaf and then decides to get implants when they're an adult? It's not like they can magically learn how to speak since it takes years of super intensive speech therapy for adjust to finally hearing. Those videos you see where children get their implants activated and it's a wholesome moment that melts your heart? Overdramatic. Implants literally sound straight up robotic. Speech would sound like if Donald Duck had a baby with the Terminator. It would be very hard for a person who's been deaf all their life to recognize any type of speech after getting an implant. However, if they're implanted as a baby, they usually acquire spoken language normally because learning languages is much easier when you're young. I've also heard deaf schools are absolute shit when it comes to educational quality, and some colleges don't even accept the credits because they're not rigorous enough. I guess parents have to weigh the pros and cons of both options.

Are there any other narcoleptic nonnas here?

I am narcoleptic, it has destroyed me and my life. BUT new medication just started, has been an absolute miracle. 2 decades of failure and misery. I finally function. Not 100%, but almost overnight I became a real person. Several times disability was suggested to me but I was not ready to go that route. I dream of success. Now, maybe that will happen.

The reddit narcolepsy community was good after being diagnosed but it is only good for a little while before it gets bland, sad, and repetitive. Would love to know if any other narcs exist out there, we can compare hypnogogic hallucinations.

It is a very isolating disease.

>>1166630
There are no ethics. A fetus isnt a baby.
As far as disabled children go, if i screened and did genetic testing and found out i was very high for having a baby with severe disablities, I would not have children or adopt instead. I dont see anything brave or heroic about parents who bring a disabled child into this world, knowing they will leave behind a burden.

Anyone fucking hate the “spoons” shit? It feels so condescending and infantilizing to me. Last straw was my completely healthy and neurotypical friend talking about “not having spoons” bc she heard someone else say it. I raged

>>1213851
I read the whole origin story to try to get less annoyed by it but I cannot. Exactly what is wrong with saying “I don’t have the energy” did you forget that phrase exists? My friends and family have never had a hard time understanding that. They don’t know 100% exactly what that means or how the experience is but they don’t have to and they probably never will.

>>1213851
God yes I hate that shit.

>>1213873
in my experience people sometimes really don't understand that the bare minimum is too much for someone. there was a time in my life where i had to choose between buying groceries or going to class later because just carrying a tote full of food for the next 3 days was too much for me and would make me sleep for the rest of the day. i just didn't have the energy for both and a lot of people just didn't get that. but i used to be mutuals with spoonies on tumblr and they would have these spoon graphics embedded in their tumblr layout and every day they edited the spoons to match their spoon level. like jfc. if you can mess around with html so the spoons accurately represent your energy level, you can do the one annoying thing you've been putting off for weeks.

>>1213851
I hate it so much. I do have a very limiting condition. I went to a therapist (who was actually great for once) and one day she explained the spoon theory to me as a way to stop beating myself up for my daily failures. Inside I raged. But she meant well and I pretended it was a fantastic analogy as to not hurt her feelings, because the rage I felt was straight up unjust. But my god I HATE spoony spoon people

Wanted to bump this thread.
Any disabled nonnas deal with CBT being pushed as a treatment for your physical disability? Does it actually help you, or do you think the industry behind it is gaslighting with extra steps?
I read this article recently and it got me thinking. https://disabilityvisibilityproject.com/2021/11/11/how-cbt-harmed-me-the-interview-that-the-new-york-times-erased/

I've seen no benefit personally but then again I wonder if it's just because I'm a negative bitch and can't think positively enough

>>1928351
I already hate CBT out of principle and felt it was terrible for my mental health, so I can't imagine it being helpful for my physical health. I don't even see how it possibly could be for anyone except if your physical disability is heavily related to your mental state.

>>1928401
I also hate it, for both. My disability has no treatment and it's rare so all the research funding goes into CBT and coping strategies since they can't figure the rest out. Part of me thinks that maybe eventually it can calm down my nervous system and help sort of that way but the fact there's no real research sucks. The CBT industry controls so many chronic illnesses and disabilities