disabledbutchblues - Tumblr blog

[disabledbutchblues]

annoying autism dad or whatever just told me i wasn’t autistic after talking to me/my mother for 10 min about my medical history. and i was there for mobility aid things too so he’s trained in disability stuff i think. also said i wasn’t epileptic (true) and all autistics people were. which is like. full misinformation.

he tried to say since i can communicate i can have autistic traits but not autism. again i know my privilege, i’m level 1 in communication (2 in behaviors). still middle support needs tho. not even like most LSN autistics who talk and are independent. i talk very well i’m lucky. his son probably struggles a lot more than me and i can acknowledge that. but my autism still means i need a lot of accommodations, can’t stay alone for a day, can’t cook, need regular help/prompts to shower, can’t work nor drive right now, so need so much help with all IADLs and some help/prompting with some BADLs for now. i’m recognized as autistic by the disability services in my country. how is this not being disabled i don’t understand

[disabledbutchblues]

It seems the cane won't help you much in that case unfortunately. It only takes some 20% off the pressure you put on your legs, or one leg, if you use it correctly. Main purpose of canes is actually to help with balance. I'm no expert but imo you would benefit more from crutches or rollator. But I totally understand if they're not an option for you for whatever reason, I don't have them either even though I'm in the exact same situation. It's also totally fine to keep using cane to signal disability or even if it just helps just a little!

thank you for this answer ! i’ll keep using it for now because it’s still better than without it. i tried to talk about it with my mother/caregiver but she doesn’t want me to use crutches because "it’s not practical" and "i need to have at least one hand free", same for a rollator (+ it’s kinda expensive). and the rest of my family is just against me using any mobility aid. but if it really doesn’t get better i might start asking again

[disabledbutchblues]

so far in my journey to understand why i’m always in pain :

• people watched me cry from pain, not being able to keep my eyes open, sweat and hyperventilate after less than 10 minutes on a training bicycle thing, and decided that there was nothing wrong with me at all. even when it took me 15 minutes to be able to sit/stand afterwards because i was about to throw up or pass out

• at least there’s nothing wrong with my heart

• a lady let me talk about why i think i might have heds and why i think i should get tested for it but did not actually listen to anything, looked at some points of the diagnosis (but not everything !!), and decided i was not even hypermobile (i would love to trust her and she might be right but she didn’t do the stuff correctly lmao)

• one doctor says i have orthostatic hypotension. another says i don’t have it. a third says i don’t have it but my tension is naturally quite low (does that mean hypotension or not ??)

• current explanations for my chronic pain that makes me need a cane are : i’m too tense (bc my body is reacting to the pain !), i don’t move enough (bc pain stops me from moving !), it’s psychological, it’s normal pain (???)

• things i should apparently do if i want to get better : do sports, go on a walk every day, do things even if they hurt, not use the lift at uni, not rely too much on my cane, do breathing exercises

[disabledbutchblues]

genuine question : how much are mobility aids supposed to help ?

i’ve been using a cane outside my house for like two months now (and sometimes i use a crutch instead) and sure my pain is worse when i don’t use it (like 3 weeks ago i had to survive a few hours at uni without it and i almost cried from the pain), but it’s not helping that much. if anything the main advantage is that it forces people to acknowledge that i’m disabled and can’t stand for long. but i’m still in pain most of the time and i don’t know if it’s just because that’s how my body will always be in that amount of pain, or if i need another mobility aid ?

[disabledbutchblues]

hey the "stop everything youre posting and talk about this" bullshit youre pulling for the palestine genocide? yeah its just making people especially people with ocd feel fucking terrible. for my mutuals: stop reblogging that shit. it makes me and im sure a billion other people who follow you feel like shit.

[disabledbutchblues]

You shouldn’t date or become serious friends/partners with someone if you can’t stomach the thought of being stuck in a car or train with them for 16 hours.

[disabledbutchblues]

good luck op. losing skills is hard to cope with. i can relate, it’s so hard to think and understand things now, even on my special interests. i hate it :(

I hate how i've been losing basic skills like talking and understanding concepts and stuff slowly.... it feels like my brain is deteriorating :(

[disabledbutchblues]

I love it when people try to claim representation in fiction is being taken “too far” to the point where it’s no believable. They’re like: 

“What’s next, a mixed-race immigrant on the autism spectrum?” Hi, my name is Rachel, also known as Rachna, and I’m a mixed-race immigrant on the autism spectrum. 

“What’s next, a transgender Latino man with chronic pain?” What, you mean my former colleague, Marco? 

“What’s next, a Black Jewish lesbian?” Bitch, I know I three Black Jewish lesbians, WHAT’S YOUR FUCKING POINT?

[disabledbutchblues]

(lower-MSN person here, formerly LSN. just adding my thoughts but tell me if you want me to delete)

MSN and HSN people don’t hate LSN people. and it’s very understandable if they’re rude sometimes.

yes, it can feel uncomfortable to be told to face your (general "you" here) privilege when you’re already an oppressed person. it can feel uncomfortable to hear that you are lucky when your needs aren’t met and you are struggling everyday because of your disorders. it’s normal for it to not feel agreeable, but it doesn’t mean people saying that are wrong. MSN and HSN people are not denying LSN’s experiences and struggles. we can be struggling but still have it better than others and it’s important to be aware of it so that we can advocate for everyone. MSN and HSN people’s anger is extremely valid and maybe they wouldn’t be so angry if LSN people (and abled people) listened to them more often.

it’s important to hear the difference between "fuck your problems, you’re not even disabled, your life is easy" and "i acknowledge that you struggle and that you are disabled but you need to realize that disability can be a lot worse and that you aren’t listening to disabled people who need more help and support." sometimes it’s not said gently and that’s ok because oppressed people don’t owe others kindness.

listening to people with higher support needs help and if we push through the uncomfortable feeling that’s here at first, we can actually help our community. advocating for accessibility and demanding accommodations is more important than some people’s feelings being hurt because they believe their situation is the worst experience possible.

hey sorry to ask but, what’s with some people in the autistic community being rude to LSN people (from what i’ve seen)? i’m only asking this really because i went on to the LSN tags and it’s all just people talking about non-LSN’s and or making LSN’s seem like the worst people in existence, there were barely any posts about them that were positive in the slightest! it was so disheartening to see all this negativity about a group that you're a part of! (for slight context i’m a low-medium support needs autistic and also sorry if this is formatted weird this is my first time sending an ask to anyone!)

Hi anon, I’m trying my best to word this in a way that is respectful.

Tumblr is one of the first platforms I’ve seen that has uplifted the voices of higher support needs individuals, and actually make them heard and seen. You don’t see that on any other platform. Most other platforms are all filled with lower support needs individuals. TikTok is a great example of this!

I looked myself on the low support needs tag before writing this, and all I see is anger. Anger towards low support needs but not the way you think. They’re angry that their voices have been silenced for so long, they’re angry that they haven’t been heard and are just now in the 2020s being heard and understood. But still with great hardships, like fakeclaiming and being called hurtful things.

A lot of the posts I saw were asking lower support needs people to see their privilege. To just see it. To realize it. That’s what a lot of it is.

It’s ok to ask others to see their privilege for once. It’s ok to ask others to take a step back and see what they aren’t currently seeing. It’s ok for people to be angry at them. That’s ok.

I’m sorry you feel attacked, I’m sorry you feel like there’s so much negativity in the tags, but that’s apart of it. There are still some amazing low support needs people on this app that you can follow.

Again, this is just my observation and what I’ve seen.

[disabledbutchblues]

i haven’t had full meltdowns or shutdowns these past few days/weeks and i’m really glad of that (full meltdowns for me = auto-aggressive / harmful stims, trapped in skin and stuck in a very specific headspace for more than 15/20 minutes // full shutdowns for me = total intolerance to any stimulation and inability to interact with the world or to handle anything, stuck in a very specific headspace for more than 15/20 minutes, can last multiple hours) but i keep snapping at people and being really mean. like really short meltdowns but the energy keeps impacting me badly afterwards. there is always the potential for a big big meltdown or shutdown just behind my skin and i’m scared for the moment it’ll really happen. something changes or is unplanned or i am asked to do something i can’t or i struggle with something or i get lost and suddenly i am yelling or hitting or running away or doing big violent movements of frustration and anger. that’s over 10 times a day. i cry of frustration all the time. my pain and fatigue are really getting worse and i cry or have harmful stims every time sensory stimulation gets overwhelming (which is almost always), so i always feel like i could shutdown at any moment. i’m so upset and distressed almost all the time uni is hard having a hurt caregiver is hard staying alive is hard i don’t know why it’s so hard

[disabledbutchblues]

Do you have any neighbors who could help? Also agree with what the person who commented said about social workers and charities. If you're religious, people at place of worship, maybe?

If have the funds, can get temporary caregiver. If just hand is injured, she can help you look.

not know neighbors yet. mother will ask social workers and charities yes hope they can help. no place of worship, my family is atheist (am religious but polytheist, practice alone). temporary caregivers are expensive i think and mother doesn’t have much money but might try

yes thankfully is just hand so she can help me look / tell me what to do / how to do things, otherwise would be dangerous because unfamiliar/unplanned tasks are very hard for me

[disabledbutchblues]

disabled people please need help. really really need help / advice. caretaker (mother) is injured bad on hand. hurt yesterday surgery today big splint for 6 weeks.

problem is now she need help with lot things like BADLs. she can’t be caretaker for me. i can’t be caretaker for her. at least not if my needs not met first (need help with lot lot IADLs). i can’t cook or anything. dishes huge huge sensory issue, know how to but cry hate it very upset can meltdown. very little energy and am supposed spend most days at uni (also very hard shutdown lot not know how can do if more things do at home).

but we moved house this summer. no family here no friend no one. no caregiver can come help. just me + mother. what can i do ?? how ?? am so so lost so so scared lot of unplanned things lot of hard tasks. am disabled child but suddenly have to care for hurt adult. advice ?? wanna cry.

please don’t know what to do don’t know what need don’t know what can help please rb if no idea/answer

[disabledbutchblues]

my appointment at hospital for pain was very useless, they say i need to be active and do more things slowly but i can’t if nothing reduces my pain. am already walking everyday and it doesn’t get easier actually i get tired more quickly every time. my pain can’t always be anticipated because sometimes i can walk 20 min and just be tired and have pre-syncope symptoms and sometimes i walk 5 min and have to sit down because too much pain in legs. body weak for no reason and changes all the time !! can’t start exercising, will collapse from pain or faint. need painkillers diagnosis medical help someone tell me pain is real and can be helped. good news tho = they gave me appointment with EDS doctor/specialist in 2 months !!! will examine me and check symptoms to see if might have hEDS or if it’s something else. have to wait and suffer until then tho

[disabledbutchblues]

people scary (bus uni street = lot people)

[disabledbutchblues]

hate hygiene hate hate hate it too hard too much useless always dirty again !! brush teeth hard. shower hard when can too tired to use soap everywhere. even if take care of body have dirty nails dirty places weird mold-like things in body parts with creases/folds like navel. even if shower regularly !! so unfair. am angry tired upset can’t handle take care of body

[disabledbutchblues]

I’m not smart. I never have been. I’ve never been the gifted kid type of person, I’ve never been the kid who was able to keep up with their peers.

I couldn’t read chapter books until 8th grade. I still can’t do pre-algebra. I struggle with remembering dates, and important historical events. I don’t know the presidents and important figures in history.

I’m not smart. This is the reality for me as someone with an intellectual disability and multiple learning disabilities. It isn’t bad that I’m not smart.

I’m not “smart in other ways” I’m not that. I’m just not smart, and I’m ok with that. I’m ok with being not smart. Or dumb. Or stupid. Or whatever you wanna call me. I’m ok with not knowing things. I’m ok with being behind my peers. I’m ok with it.

Stop trying to lump me into this group of people who are “smart in other ways” cause thats not ok for me. Some people just aren’t smart, and that’s ok.

[disabledbutchblues]

bad day. head hurt. morning bus too many people so had to stand but pain in legs. then uni tiring hard focus. now sensory issues get worse want scream. still many classes. is 3pm, will be home at 8. hate it need rest