Possibly an unpopular perspective, but sometimes I feel like parents of children with similar or higher support needs to myself who campaign for things like changing places toilets, affordable health and social care, better quality care homes, and better access and funding for education understand a great deal of my life better than people who are disabled but never give a thought about those with high support needs.

Someone who knows what it's like to plan their entire life around the just over 2000 registered changing places toilets in the U K (compared to over 43,000 towns, cities, and villages) so that their child can use the toilet with dignity understands that part of my life better than the disabled people who have never even thought about the lives of people who can't use standard accessible bathrooms.

People who go out in public with their wheelchair using child and see the looks they get, hear the ableist comments and experience how much of society wheelchair users are cut out of understand that part of my life better than the disabled people who told me being a visibly disabled full-time wheelchair user makes me "privileged" compared to other disabled people.

I know that there are problems with some nondisabled people who are close to a disabled person talking over disabled people's first-hand experience, but I also think that there are some disabled people who could do with actually listening to severely disabled people and our families rather than assuming that the experiences of people with lower support needs are universal

Shout out to those who have to be carried or dragged around their house because their house isn't accessible to their mobility aids

Shout-out to those who have to crawl and scoot around their house because their house isn't accessible for their mobility aids

Shout out to those who have to use a office chair with wheels around their house because their house isn't accessible to their mobility aids

It's fucking tough having a inaccessible house

ok so you know disability justice theory & activism but you normal abt severely disabled people needing help from you in way that inconvenience you & severely disabled people not able do things you deem basic & severely disabled people same time having hobbies you don’t know how do? are u normal abt severely disabled people when you meet us

Not Pixies fault . not guardian Wizards fault . but . get official warning any way . if get One more then Pixies whole life Become Not Accessible to Pixie .

Too many of Pixies Classes and outings, and All of Pixie's social interaction socializing with people some much be like Pixie and . others with different disabilities , 100% depend on Access bus ( bus system made for severely disabled people ) .

and pixie Lose All that … Make Pixie be trapped in house all day every day . ( and . nobody do zoom any more ) …

If not can do even just Some of pixies programs . Pixie lose everything . go back to . Be stuck in house . ( except for walk in neighborhood with Sunshine ) …

for However long time that can not use Access bus . until them Access bus people decide “forgive” Pixie and allow Pixie use Access bus again . for things what are . Not in Any Way Pixies fault or guardian Wizards fault …

Big reminder of how not fair whole world is to severe disabled people…

can i suggest you use full words instead of tone tags? as a severely disabled person (moderate support needs, on the lower end of it) tone tags are very inaccessible. to people with memory issues, communication issues - autism that severely disables, brain damage, intellectual disability, etc. this is not aimed at you but the less disabled people community don’t tend to include severely disabled people, nor make things accessible for us

thank you! we will keep it in mind :3

I am so disabled that I don't know when I'm sick anymore, and when it's just the usual. Sometimes it is very clear, but other times I have to invent new ways to tell. I have nearly missed a fever of 39.2 C because I just feel so horrible all the time. I have to ask my family members if they are also sick, I have to ask my med student family member how can various things affect such a weakened body and what something can be other than what seems obvious (it does turn out to be that). And more things like that.

And when I am sick I now have to always dread it'll become another major disabling event, no matter what it is.

Heating pads are so good they don't make my pain go away because I'm consistently at around 7-8 level pain but it is at least slightly soothing only downside is sometimes it burns my back doesn't help that I'm mostly bedbound. I really want like a full body one or one that wraps around joints? Maybe those exist

Obviously it’s impossible to draw a line in the sand around severe disability because disability is a complex series of spectra along lots of domains.

But so many people would be helped by remembering that people with locked in syndrome, high level SCIs and profound and multiple learning disability (among other things) are real people who exist.

I need 24/7 care, can’t transfer without a hoist and have a bunch of medical stuff going on and I’m definitely on the lower end of severe.

does anyone know any organizations or group or something that would help with housing and providing a full time caregiver to a transgender severely disabled high support needs autistic adult? I've accepted that what is happening with me is neglect and abuse and I don't know if I will actually go through with trying to get out of my current situation but I would like resources anyway. I know adult protective services is one thing I can contact but being transgender and intersex I'm scared that if I where placed in a different home I wouldn't be allowed to transition and forced to take estrogen for my intersex condition we live in Mississippi so it's likely the placement would be transphobic.

you know how thing where. mildly picky eating independent adult parents are “allow” be picky because they do grocery shopping and they get to already picky their grocery they can just not buy thing they picky over n it not big deal. but picky eating child maybe even child of same picky eat parent not allow same grace because they not get say over what grocery buy so when they throw fuss at food at dinner table they picky over they get scold and yell at and get blamed for picky and be told get over it be told personality flaw by same picky parent and their picky more visible & more “problematic” because rely on parents and they not have say in grocery store?

that kind of how it like for literal everything everyday for disabled people who need other people physical help for every big n small thing from like go somewhere fun to like late night need help scoop icecream from freezer get bowl get spoon or like go pee in middle of night. we kind of at disposal of carer caregiver’s whim their schedule their mood their interest it okay they don’t want do something for themselves because they call shots they don’t want do something they largely can because they independent they only have look at own schedule own mood but when we want do something we need look at carer caregiver mood schedule interest whim

[this about disabled people who need other people physical help on big n small things bADLs iADLs n below n beyond. do not derail]

Just a transparent post about my disability and the effect it has on my mental health. I’m trying to stay strong and push through. This is just a reminder to people (especially the disability community) that you don’t have to remain positive all the time.

Severely Disabled

Sometimes it's so isolating being so disabled by a condition that doesn't affect other people as much as it affects me. I can't walk. Half the days I struggle to get out of bed with my transfer board into my chunky powerchair (which I use full time) before 4 PM. I wear braces on almost every joint in my body, experience extreme fatigue, and am functionally a paraplegic (including my trunk) due to spinal problems (that typically don't get this severe because they are typically caught before they progress this much) but sometimes my hands are affected too. I can only microwave meals and have struggled to arrange care for myself even with a decent support system. I feel like I don't understand how all of this can be true while I work two part-time jobs (totaling to like 20 hours a week) plus school. It feels like because I can work and go to school I should be fine but I'm not. Without my meals preprepared by dining halls and without skipping multiple classes every week, I cannot function. I need weekly IV fluids in a port because I only had two good veins to begin with (which are now occluded) in a condition for which IV fluids are a "hot topic" aka a highly contested treatment that in the end denies patients any sliver of quality of life. I have only been recently able to travel long distances in cars without having to bear ridiculous symptoms (as I finally was given a neck brace which helped my symptoms induced by motion). Honestly, I just feel so alone. I know people have a lot going on in their lives you can't always see, but the nature of my disability is the opposite of invisible. I guess I just want to hear from other severely disabled people. That our experiences are not so common. That our experiences are hard. That our experiences are unique. To be understood in the fact that severe physical disability is different from moderate or ambulatory physical disabilities. That not being able to hold yourself up and get out of bed is a different life from being in an active chair and able to master wheelies. I feel alone. My disability is hard. I am proud of it mostly because I am proud of who I am. I'm just struggling to feel in community with others who don't need so much support, who don't feel so removed from it all or feel so unseen.

tumblr is always like accept that som things are good despite u not likin them, or it's like learn to stitch cloth cuz it's really useful & learnin new stuff is good 4 ur brain, or it's like learn to say somthin else under ur breath instead of "im gonna kill myself" becuz depression is bad

well WHAT ABOUT PPL WHO CANT EVEN BEGIN TO DO STUFF LIKE THAT CUZ ITS HARD/UNCOMFORTBLE AND WE'RE STUPID AND WE JUST WANNA SEE BASIC NONTHREATENING ART OF OUR BLORBOS AND MAYBE A CUTE ANIMAL, AND READ POSTS SAYING WE'RE DOIN GREAT AND WE'RE PRETTY AND WE DESERVE CHOCCY MILK???????

normalize content for unintelligent rigid-minded curmudgeons