Just Man with Wheels

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.

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.

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.

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.

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.

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.

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.

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.

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.”

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.

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.

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.

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.