Just Man with Wheels

I'm disability advocate and full time wheelchair user who has both physical and mental disabilities I love star wars, para hockey, lotr & silm, si-fi and fantasy in general, rocks, birds, and art

[crippled-peeper]

the “parents favor the sick child” stereotype is so utterly fucking untrue . I’ve literally seen parents make their teen kid babysit their 3 younger siblings while getting chemotherapy for aggressive cancer

the myth that when you’re sick you’re given everything you want is such insane made up bullshit 95% fabricated by jealous abled siblings and peers who will go on to disown you the microsecond you don’t get them attention anymore

[crowpunkcognitivedecline]

so, a fun fact about me: i wasn’t always the sick/disabled sibling.

my younger brother had a major mental break when i was in middle school and he was the focus of the house for years. i was absolutely jealous. i was angry. i felt forgotten and left behind and unimportant. there was a period of time where i genuinely hated him for it.

those feelings are normal. it’s hard, especially when you’re struggling, to see your sibling getting all the attention and care and help.

but there’s a step after that: growing the fuck up.

i’m not proud of how bitter i was towards my brother, but i’m not ashamed—i didn’t take it out on him, and i was having a bad time, and also a child.

but i can’t imagine myself even at sixteen (let alone now or into my 20s) being comfortable claiming that i suffered more than my brother, that my struggle was worse, and moreover that MOST siblings of disabled people suffer more. i can’t even fathom how embarrassing and horrible it would be to act like saying that was activism.

i’ve become the more severely disabled sibling, now. and you know what feels worse than being a “glass child” did?

dropping out of high school twice while my brother breezes through. my brother having a job and doing community service while im ‘unemployable.’ seeing him do park cleanups and runs and archery when i cant hike or roller skate anymore, both of which were so important to me.

the mental scar of being the less disabled child has nothing on losing my entire life, and then often still being expected to succeed, to function, to help others when my spine is sliding apart and i’m trapped in my home the majority of the time.

your trauma and struggles with having a more disabled sibling are valid. your projection of that onto disabled people and your sibling is vile and ableist. how disabled people are treated isn’t fucking about you.

(and for the record, i love my brother and absolutely none of this—not when he was more disabled and not now—is his fault, and blaming your sibling for being disabled makes you a bad sibling.)

[the-fox-collective]

Yeah okay the amount of you who will use severely disabled people as a "gotcha" card or just ignore their existence is baffling and I am upset by it.

An accessibility tool that makes life easier and an accessibility tool that keeps you alive are two very different things.

There are non-ambulatory wheelchair users who do not have access to wheelchairs and die because they are laid down too much. There are people who require hoists to get onto hospital beds and will die because their practice is unequipped. There are people who die because their disabilities are not taken seriously.

This is not the fucking same as a discord bot, whether that bot be TTS or PluralKit. This is not the same as ADHD medication or having a sensory friendly experience.

Stop using severely disabled people as a fucking gotcha, and start actually thinking about real life consequences of inaccessibility.

[pink-slay]

Sometimes it's hard to explain to people why I need other severely disabled perspectives and people in my life, but when I see posts trying to explain how sometimes disability isn't inability, just inability to do all that an able-bodied person does, I find it much easier to identify the reason why I need severely disabled people and their perspectives in my life. Wow, that was one hell of a sentence, anyways, of course, it is disabling to only be able to do some stuff. I'm glad that some people find ways to explain their disability by describing how they could have an immaculate house, but eat poorly or never bathe or how they could exercise, but not have enough energy left over for work. However, I need able-bodied people to not see these articulately-described experiences as the only experiences. Sometimes disability does mean inability.

If I had nothing else to do at all, I could not shower on my own, I could not do my laundry without assistance, I could not clean my room, I could not get up off the floor, I could not have enough energy to transfer as much as I should, and I could not walk AT ALL. These experiences of significant inability would not change in a vacuum, and yes, no one exists in a vacuum, but being able to do anything in a vacuum gives forth to a possibility someone could do something one time (at significant cost) if they really needed to. It begets the possibility of survival in a situation where a severely disabled person would die, so that is why I need severely disabled perspectives because death isn't like anything else.

I respect people's experiences with lower support needs disabilities, and I think that they should have the right to discuss them. I also think that disabled people shouldn't have to appeal to able-bodied people, begging for belonging. I simply wish that, in a world where more privileged perspectives are often overrepresented, severely disabled perspectives would be represented too.

I've spent so much of this post decrying marginalization of severely disabled voices, so now I would like to share a bit of my own, not really related to asking to be heard:

Things I'm excited for as a severely disabled person: moving out of my dorm and into a city with better caregiving infrastructure, not having to rely on informal caregivers like friends to help with laundry and the bare minimum cleaning not to make my space a hazard, having people who can help me get dressed more often, home health that can access my building (instead of me having to fetch them from the lobby), a ceiling lift so I can stop purposefully dehydrating due to my inability to do as many transfers as I need throughout the day, an adjustable hospital bed that allows me to sit up without screaming every morning, better pain management, prescription refills, even one day of sleep that isn't plagued my pain that penetrates its way into my nightmares, a solution for food without dining halls and frozen meals (if possible).

I think of my privilege all the time, maybe even a bit too much, but I think it is important to evaluate the things you look forward to from time to time and think about if what you despise is something someone would wish for. Of course, you are allowed to struggle even if it's not as bad as someone else. I most definitely am not saying that you aren't allowed to struggle or complain or have feelings, but I think it is important to remember, like stated before, that we do not live in a vacuum and to take into account that people may have more extreme struggles than you could imagine.

One of the reasons I would love to hear more severely disabled perspectives and voices and words is because it means that they haven't been killed by systemic ableism yet. Another reason is that I think that people deserve to see the nichest versions of themselves represented in others. Without sharing the most basic experiences, like the taboo needs of severely disabled people, people will never realize there is a whole wide world of people out there who may understand just how extreme things are, just how maddening.

If you are telling people they are not alone in a struggle (as I have been told), the people that are struggling must be struggling on similar levels. I don't want to be told I am not alone and then compared to people who don't need as much support because it only makes me feel more isolated. In a world that already isolates severely disabled people so much, it is important not to trivialize our struggles further with your words.

[flowercrowncrip]

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

[the-firefly-herd]

Hate when some people in the disability community act like you HAVE to love being disabled, that if you're angry about being disabled, wish you weren't disabled, or have any feelings about being disabled that aren't celebrating or positive then you should keep them to yourself. Or if you talk about how your disability disables you then you're some how being invalidating to people who are less disabled. Fuck that. Or the people who act like being a part time wheelchair user makes them the spokesperson for being a wheelchair user and that being a ambulatory wheelchair user makes them better than non ambulatory wheelchair users. Or the people who say shit like being severely and visibly disabled is easier than being invisibly disabled because they think visibly or severely disabled people get treated like royalty and get treated with understanding and care and get all the accommodation we need. When its the exact opposite. Lot more I could say about that and more things tha fill me with so much anger about some parts of the disability community online.

Being disabled is part of who I am and I wouldn't be me without my disabilities, but being disabled sucks. It's ruined my life, I've had to mourn my own self over and over. I'm not sure thats something I'll ever be able to get over. Sometimes I hate being disabled so much. I look at people who are able bodied or less disabled then me and I feel bitter and jealous. I hate that I can't relate to most of the disabled people i see online, most of the people i see are people who can do so many more things then I can, who's very bad days are just how my days are all the time. This isn't me saying they aren't disabled, just that I can't relate because of being severely disabled. It's so hard to find disabled people like me, this could just be because of how shit I am at finding community though and not knowing where to look.

[flowercrowncrip]

I got asked by a stranger again tonight if they could have a go on my wheelchair, and I just really want to know what is going through peoples minds when they ask this? Like, do they want to sit in my lap? Do they expect me to like, lie on the floor while they make off with my very expensive very difficult to replace power chair? …What's the plan?

[flowercrowncrip]

I’m getting so fed up of people assuming that I must have infinite energy when out and about because I use a power chair rather than walking or propelling a manual wheelchair

Being in my wheelchair isn’t restful for me. It is tiring and it is painful to be upright, to hold my arm in a position to move the joystick, to go over all the bumps when outside.

Just because you think a chair like mine would solve your tiredness, pain, or fatigue doesn’t mean my body is the same.

[flowercrowncrip]

I think a lot of physically abled people think that medical settings are designed to be accessible for physically disabled people, when that is so far from the truth.

I can't access half the rooms in my GP surgery, which often means that doctors have access to the computer system during my appointments because they're logged in upstairs and it would take too long for them to log out and then log back in. The GP practice also doesn't have any accessible parking spaces – I have to park in town and then walk/roll 20 minutes just to get there.

Then there's the fact that the equipment just isn't accessible. The GP practice cannot monitor my weight or perform certain physical exams because they don't have sitdown scales or any hoist safely transfer me on to an examination table. This meant I developed life-threatening starvation related ketoacidosis because my GP was unable to monitor my weight when I was unwell, so didn't realise how bad my malnutrition was.

A lot of wheelchair users in the UK resort to using veterinary practices because dog scales are more accessible than the scales in GP practices.

The same is true in hospitals. The majority of hospitals don't have changing places toilets so anyone who needs significant support from carers, or who need hoisting or an adult changing table can't use the toilet in hospital. When I was admitted recently every time I needed to transfer to a commode it took a significant amount of time to find people who had the appropriate training to use the hoist. And when those people were found, there wasn't really enough room to use one safely or with dignity. The commode that they had also did not meet my needs at all, and it's honestly a miracle I didn't fall, which given I'd just had surgery wouldn't have been good.

[flowercrowncrip]

ID: tags reading “wait are nurses/ orderlies no longer required to be able to just lift a patient. Like 600lbs even is a 2 person dedicated lift but that’s what medical staff are for”

I think this depends on where you are, but here in the UK we don’t do transfers like this. That’s because even with the best technique the risks to everyone involved are too high.

If you’re regularly lifting people the chances of disabling back injuries over time is huge, especially if a patient has uncontrolled movement, high tone or isn’t able to/ doesn’t want to remain still for any reason. And the risk to the patient from being dropped or incorrectly lifted are also pretty high.

Policy will depend on where you are, but using hoists and other lifting equipment will always be safer than trying to lift a person without that equipment

[shhhhimwatchingthis]

You want to know why Inigo Montoya remains such an iconic and beloved character even 35 years after the Princess Bride came out?

It’s because he’s one of the few characters in fiction who has a story where he has dedicated his life to revenge, his whole motivation is about getting revenge….and he gets it! and then he isn’t empty or despairing! he doesn’t regret it! he’s totally satisfied!

because so many stories about revenge or rage are about characters “seeing the futility of their actions” or learning “their desire for revenge has only made them the monsters they hated” FUCK THAT.

Inigo Montoya kills the man who kills his father, is allowed to live in the narrative after and be happy about it and it is so satisfying. it’s fantastic. it’s iconic.

let more characters rage against the world, bring it down with bloodied hands, and let them be FUCKING RIGHT about it. Let them celebrate their success with sharp grins, and let them live happy, full lives where they always remain proud/fulfilled for what they’ve done

[shinobicyrus]

Another thing that set Inigo Montoya apart from other characters with vengeance arcs is that Inigo’s vengeance drove him but it didn’t consume him. He was wronged and wanted - needed that injustice to be corrected - but his vengeance was focused. Rather than taking his pain out on the whole world, Inigo was a charming, pleasant, good-humored person that treated everyone respectfully, even folks he was fighting. He even asks politely to people he meets about any extra digits they may have.

Would a bitter, angry, vengeance-consumed man swear on the life of his father and help a guy he was planning to duel, then give him time to catch his breath? Would he hand his sword over to his future opponent to lovingly show off his late-father’s skill as a swordmaker?

“You seem a decent fellow. I hate to kill you.”

I think part of what makes Inigo so iconic and beloved is because while vengeance was his story, it wasn’t who he was, so when he achieved his vengeance it was less an emptiness and more of a satisfaction, a story completed, a wrong made right, and a man suddenly baffled at the possibilities before him, not sure what his next story would be.

[sizhens-deactivated20250415]

not to be an asshole but i think a lot of disability discourse on this website cannot comprehend the idea of being physically disabled in a way which is like. not at all negotiable or flexible. like i think it's great that we're pushing people to understand that disability is nuanced and that there are disabilities which are not visible forms of physical disability but also like. sometimes you straight up cannot climb stairs. no not even on a good day not even when you "have enough spoons" it is just not physically possible. or you cannot get on and off a bus without struggling or without help. or it is physically not possible for you to bathe yourself. and it's not about "and you force yourself to push through it because of the internalized ableism" because you literally cannot physically fucking do it. like i am not trying to be mean but i feel like it frequently strikes me that people talking about disability seemingly do not understand the concept of I Literally Cannot Do This No Matter How Much I Want To Or Try Like It Is Physically Not Possible

[crippled-peeper]

the “parents favor the sick child” stereotype is so utterly fucking untrue . I’ve literally seen parents make their teen kid babysit their 3 younger siblings while getting chemotherapy for aggressive cancer

the myth that when you’re sick you’re given everything you want is such insane made up bullshit 95% fabricated by jealous abled siblings and peers who will go on to disown you the microsecond you don’t get them attention anymore

[crowpunkcognitivedecline]

so, a fun fact about me: i wasn’t always the sick/disabled sibling.

my younger brother had a major mental break when i was in middle school and he was the focus of the house for years. i was absolutely jealous. i was angry. i felt forgotten and left behind and unimportant. there was a period of time where i genuinely hated him for it.

those feelings are normal. it’s hard, especially when you’re struggling, to see your sibling getting all the attention and care and help.

but there’s a step after that: growing the fuck up.

i’m not proud of how bitter i was towards my brother, but i’m not ashamed—i didn’t take it out on him, and i was having a bad time, and also a child.

but i can’t imagine myself even at sixteen (let alone now or into my 20s) being comfortable claiming that i suffered more than my brother, that my struggle was worse, and moreover that MOST siblings of disabled people suffer more. i can’t even fathom how embarrassing and horrible it would be to act like saying that was activism.

i’ve become the more severely disabled sibling, now. and you know what feels worse than being a “glass child” did?

dropping out of high school twice while my brother breezes through. my brother having a job and doing community service while im ‘unemployable.’ seeing him do park cleanups and runs and archery when i cant hike or roller skate anymore, both of which were so important to me.

the mental scar of being the less disabled child has nothing on losing my entire life, and then often still being expected to succeed, to function, to help others when my spine is sliding apart and i’m trapped in my home the majority of the time.

your trauma and struggles with having a more disabled sibling are valid. your projection of that onto disabled people and your sibling is vile and ableist. how disabled people are treated isn’t fucking about you.

(and for the record, i love my brother and absolutely none of this—not when he was more disabled and not now—is his fault, and blaming your sibling for being disabled makes you a bad sibling.)

[hayatheauthor]

"people ask hijabis if they were forced to wear that but not nuns because (Christian) clothing was never forced upon women" how many history classes have you skipped?! (considering your country's heavy censorship of actual history that doesn't depict them as great heroes I'd be surprised if your classes even covered it).

[flowercrowncrip]

Happy disability pride month to non ambulatory wheelchair users.

To those who can stand briefly and to those who can’t stand up at all

To those who can transfer independently and those who need carers and/or a hoist or other specialist equipment to transfer

To those who have some movement in their legs and those who are totally paralysed

To self propelled manual chair users and powerchair users and transport chair users

To those who have to keep explaining that they can’t walk and to those for whom it’s obvious and everyone in between.

To those who can control their own wheelchairs and those who need a carer to move

[flowercrowncrip]

I keep seeing disabled people on here see other disabled people make a comment on how they can’t in any situation do something and then feel the need to come up with a reason why it would be a bit more difficult for them to do it and act like that’s the same thing.

When some disabled people say we can’t evacuate in a life threatening emergency we don’t mean “it would be difficult and a bit more risky for us to crawl down a set of stairs” we mean that we absolutely could not in any circumstances even drag ourselves out of a building. We mean that just getting to a refuge area like a stairwell could be impossible on our own because we can’t pull open doors. We mean that we aren’t strong enough to independently transfer into our wheelchairs from bed. It’s quite insulting when someone says that being a bit unsteady on their feet and needing some extra time to get out is the same thing as needing someone to lift you out of your wheelchair into an evacuation chair or similar.

We need to be okay to acknowledge that different disabled people have different limitations. And we need to be okay acknowledging when other people have it worse. Everyone, including the overall most disabled and most ill people have areas of their disability where others have it worse. Everyone has someone more impacted by disability than they are. If you’re not okay with that you’re going to really struggle in disability spaces.

[sidras-tak]

Accessibility takes too goddamn fucking long.

My brother was paralyzed in October 2023. We got him home from the hospital (in Texas, when we live in Iowa) in a clunky old hospital chair. He hated it. He was scared and angry and in pain and his life had just changed forever and he couldn’t do anything for himself in that wheelchair. His first goal (aside from learning how to transfer) was to get a wheelchair. My family was lucky enough to afford one so we thought it would be easy enough. Nope.

We couldn’t buy him a wheelchair. He needed a prescription. For a wheelchair. A doctor had to examine him and declare him in need of a wheelchair. It wasn’t good enough that he had scans and tests showing tumors cutting off his spinal cord. He needed his primary care doctor to examine him during a physical and write a prescription. He was making 2-4 transfers a day, tops. He had no energy to get to a doctor. Home health was in and out every day. He had no time to get to a doctor. He didn’t get a prescription for almost a month. Then it had to go through insurance.

We asked if we could skip insurance and just buy a wheelchair for him. Nope. They wouldn’t sell us one, not even at full sticker price. It needed to be approved by Medicare. We ordered a wheelchair, a nice one, a good shade of green, sporty, small. It would let him move around the house. He would be able to cook, to reach drawers and get stuff from the fridge and brush his teeth and put his contacts in at a sink. We were told it would take awhile, maybe two months. Silently we all hoped he would be around to see two more months.

He went on hospice care on a Saturday in March. On Monday, I was calling his friends to come see him before he died. I got a call on his phone. It was the wheelchair company. They were about to order his wheelchair, she said, but there was an issue with insurance— had he stopped being covered by Medicare? Well, yes. When he started hospice care, he got kicked off Medicare. The very nice woman I talked to told me to call her if he resumed Medicare coverage so she could order his wheelchair. He died less than 12 hours later.

We ordered that chair for him in early December. Medicare didn’t approve the order until March. He was dead before they got around to it. He wanted that fucking wheelchair so badly. The only reason he had any semblance of independence and any quality of life for the last five months of his life was because the wheelchair company lent him an old beater chair, a very used model of the chair he ordered. If I could go back and change one thing about his end-of-life, I would get him his dream wheelchair. He told me again and again he couldn’t wait to get it, so that he could feel like a person again. He made the best of what he had with that old beater chair, but it still makes me mad to this day. He was paralyzed. He needed a chair that afforded him dignity. We had the money for it. And yet, we were left waiting for five months, for a chair that wouldn’t even get ordered until the day he died.

[adragonsfriend]

Hey have we considered that the reason that one guy in the Prequels was really chill about offering some Jedi death sticks isn't some massive conspiracy that the Jedi are all doing massive amounts of drugs, or even that he didn't realize they were Jedi, but instead that arresting people for non-violent drug offenses is fucking evil and the Jedi aren't cops? And the people of Coruscant generally know that as long as they're not killing people the Jedi aren't actually interested in fucking them over?

[psychotic-gerard]

the thing about disability is it really does sometimes boil down to "wow i wish i could do that" and then you can't. and it sucks.

[psychotic-gerard]

accomodations are important but i think they miss the point of this post. sometimes you can't do it. at all. someone needs to do it for you or it will never happen.

[psychotic-gerard]

"and then you force yourself anyway" folks im starting to think some of you really do not understand what it means to not be able to do things.