#powerchair user

[flowercrowncrip]

Able bodied people cannot spot a small step to save their life I swear.

That “threshold” that’s two and a half inches high — that’s a step!

That “curb cut” on the granite pavement that’s three inches off the road— that’s a step!

I’m getting really fed up of being told that places are totally accessible just to find my only options are mild whiplash injuries or not getting in at all.

[gayaest]

[OC] Farrokh, Iranian, He/They, Trans masculine/man, Gay, c8 quadriplegic uses a powerchair 🍏🧸🪴

Cervical Instability, Tethered-Cord Syndrome ⭐️ Description in Alt-Text.

[milkweedman]

Dyeing this wheelchair arm bag. The original colors are fine but really not my style, and if it's hanging from my chair I'm basically wearing it...so I want stuff that looks like me. Anyway, this is yet another prototype. So far all my wheelchair arm bags have been millspun scraps. I did also look on ravelry--seems like the basic construction I went for is pretty standard. I also want to try saddlebags (as in, two pouches laying over the arm, one facing outside and the other tucked into me). I get really scared of dropping things or being pickpocketed so having bags that are more secure would be nice. Just need to find the time really.

[giantkillerjack]

Hey, y'all! Can someone please please tell me about the process for finding the right motorized wheelchair??

I've needed an electric wheelchair for years, and I've finally gotten the right prescription and the wheelchair-accessible housing I need.

But now I need to pick a wheelchair, and I STILL don't even know where to start.

The main issue is that I have no way of trying out different models of chair, and so I have no way of knowing what will and won't hurt my back - and so I ALSO have no way of knowing if I need a custom wheelchair or not.

I live in the United States in a major metropolitan area, and my insurance will ONLY pay for one chair, so as far as I know, it needs to be the right one on the first try. (Unless there's a trial-and-return policy? I have no idea. I have Medicare and Medicaid.)

I feel like there must be some kind of specialist who can help me find the right chair, but no healthcare provider I've seen has had that kind of expertise.

Where do I find these people? What do I do?? How can I find a place that allows me to try out different chairs?? Literally any advice is appreciated. Thank you in advance. <3

[crippleremus]

URGENT HELP NEEDED!

I have until December 31st 2024 to pay my remaining rent balance or my (also disabled) fiancé, cat, and I will be evicted.

please, if you’re feeling any kind of holiday spirit or kindness, consider adding to this fund. every single dollar counts.

once i get this remaining balance out of the way, i’m on track to pay my rent in full every month with help from a raise at my job as well as student aid, I just have to get over this last hurdle.

help a cripple out?

(ignore the deadname pls)

[normal-with-adhd-is-a-joke]

I always think I'm going to have an amazing answer when a kid asks what happened to me when I'm out in my wheelchair and then a kid actually asks and I'm completely caught off guard and I just go "I got covid and now I have long covid 😐" and speed away.

[briarpatch-kids]

I don't know who needs to hear this, but two layers of minwax polycrylic topcoat seems to keeping my chair from scratching up doorways. Makes them look glossy and nice too. Put it on the doorway, not the chair.

[dionysus429]

POV: you have to charge your legs /j

(It's my powerchair battery)

[almostfini]

One of the best things about my new powerchair is that I can wander aimlessly around the house again! I don't have to plan out if I have the stamina to hobble over with my cane and grab something on my way back from the bathroom. I can just *zip* over there and back!

[flowercrowncrip]

I hate how strongly able bodied people feel entitled to my personal medical information because I’m visibly disabled.

I was once interviewed over the phone by a journalist about my job and the organisation I work for and after the interview when I sent a picture of myself for the article I got a phone call back asking what my condition was because the journalist felt my picture “wouldn’t make sense” if I didn’t publicly disclose my medical history. The journalist was completely baffled when I said I wouldn’t share that information and it wasn’t necessary in the article he was writing.

Some disabled people are happy talking to anyone about their condition(s)/ injuries, and all the power to them. But it shouldn’t be socially compulsory to disclose those things every time I exist in front of other people just because I’m visibly disabled.

[systems-overloaded]

i dont normally talk about disability stuff here i dont think, but i actually want to right now, and its relevant to me as a whole, so whatever.

(im not being specific about dx though, parts are scared somehow that could identify us, because not all conditions are common.)

~~~~

had an apptmnt the other day, i think yesterday? it was within this week for sure.

i thought i was there for a new wheelchair evaluation, but apparently these are the people who had to refer me to the people who do the evaluations and order you the wheelchairs.

a bit discouraged, because i was anticipating this being particularly a wheelchair evaluation, not just a dr whos going to document the need for a wheelchair evaluation (which. ive needed my powerchair inside my own home for 6+ years now, and my conditions only gotten worse. im absolutely overdue for another chair. there shouldnt be even more steps then there already are.)

at the apptmnt though, i honestly thought i did a good job masking. i was able to talk enough to answer questions, but thankfully my mom was there and said upfront that i have trouble sometimes with speech, that its very tiring for me. so i was able to just kinda point to her and say "too many words" and shed said some of my medical histories for me. but i answered all the questions about my relevant symptoms and pain types/levels, etc. i definitely stumbled and fumbled some words, but i thought it was "within normal speech", just maybe "tired person speech".

but when i looked at the drs notes today, under "psych" they put "flat effect". i mean... i know i have a flat effect, some alters are definitely more expressive naturally, but there are many who are just hardcore masking all the time. i struggle with even trying to mask and make those expressions (the ones others within do). but like... i thought i did a good enough job? i thought i smiled some or made some expressions? i dont think drs have ever added that before in our charts.

idk, maybe this is just from unmasking, or because im different from the parts that used to be fronting at those appointments? im not sure.

~~~~~

and im... a bit scared to be honest. for some reason every couple years, especially around autumn, the subsystems that are the main fronters, change. and although ive been fronting for most our lives, i dont think ive ever been out this much, in such a sort amount of time.

am i (and the others i have better communication with) just the new fronters? does that mean, since we all struggle to talk alot in varying degrees, and struggle to mask or create expressions, that were now going to be even more visibly autistic? visibly /vulnerable/? (like, yeah i use a power chair all the time, but i dont view that as vulnerable. i dont think it makes ppl see me as a potential target.) being visibly autistic, being visibly someone who'll rely on AAC (even when just part time, or when i can technically get some words out), and also being visibly queer at certain times, ooph... ooph. ahhhh thats ummmmm a bit scary.

~~~~~~~~

back to the appointment though. ultimately, they documented what was shared well in the notes. there was absolutely a miscommunication, they said i used my rollator in the house occasionally (id shared that i own a rollator, and had used it in the past. prior to needing my powerchair, so there mustve been a miscommunication with how i worded my response, or their interpretations). and i think some confusion initially about my conditions (since theyre used to seeing like spinal cord injuries, or people with strokes pretty much exclusively), but in the end they said i need my powerchair to complete my ADLs and that ill need the features of tilt, relcine, leg elevation, and custom positioning seating, and they specified well for which conditions i need them for. they covered all the info needed for insurance to approve those features. so i dont think imma go through the hassle of asking them to correct it.

~~~~~

im sending hopes and wishes towards the universe, for all things to go smoothly. for everything to get covered easily and for all the things that will improve my quality of life, improve my capacity for independence, to lessen my pain, and all me to be more functional even just within my home.

any well thoughts towards this is appreciated. (well thoughts and wishes, not prayers)

[milkweedman]

All my current worries about how much this bag will shrink would have been allayed had I felted a swatch.

Yet, did I felt a swatch ? No. Will I felt a swatch next time ? Probably not.

Working on a wheelchair bag again. My first two were always intended to be replaced, as they were just prototypes. Hopefully this one will be more permanent.

Idk if my notes and vague diagrams are readable at all, but I've been really thinking this one thru. Or trying to, anyway. My other two wheelchair bags have not included a way to cover the contents, which was a poor choice that I am now reaping the consequences of (everything gets wet when it rains). So the flaps are a new element that I'm not sure of, but I think will be necessary. Also will be lining it in black felt from a thrifted and then felted merino sweater. Actually, it was already a little felted when I got it. Probably why it was donated in the first place. I just felted it way way more.

Kinda worried about running out of yarn actually. And about the bag turning out small.

[perpetualspinach]

How long will you survive?

silly concept i came up with while out for a walk today. i would love to turn this isnt a simple browser-based game one day, if i have the time.

[ID: a sketchy, digital drawing with text annotations. Handwritten letters read “Hostile Environment: The game” at the top. The game involves: the best powerchair you could afford (plus one pissed off disabled passenger) versus: bad parking, people not paying attention, shit pavements, ridiculously steep driveways, poorly placed wheelie bins, and no curb cuts. Each obstacle/ “enemy” is shown as text with an associated quick sketch representation, and the powerchair/ “player” is shown as a folding powerchair. end ID]

[crippleremus]

nothing more frustrating and embarrassing than almost soiling yourself in public because you’re have a restroom emergency and someone (seemingly able-bodied) is taking their sweet time in the “big stall” talking on the phone

PSA AS IF IT WASN’T OBVIOUS:

THE “BIG STALL” IS THE ONLY PLACE I CAN RELIEVE MYSELF IN PUBLIC

IF YOU USE THE ACCESSIBLE STALL WHEN YOU DON’T ABSOLUTELY HAVE TO, YOU ARE TAKING AWAY ACCESS FROM SOMEONE ELSE

I DON’T CARE ABOUT YOUR COMFORT, YOU CAN USE ANY OTHER STALL, THERE IS ONLY ONE I CAN USE

i’m feeling so dehumanized right now

[normal-with-adhd-is-a-joke]

putting this out there because I'm kind of at a loss and the research has been exhausting.

Does anyone have a wheelchair ramp for their van that's not permanent and less than $300? If so, where did you get it?

My parents don't want to do anything permanent to our van because installation is expensive and the van is kind of on its last leg. I'm supposed to start school again in like August and the idea of hauling my chair in and out of the car manually every time is bothering me, I feel like it's going to inhibit my ability to go to class.

[veggiesforpresident]

i feel like motorized wheelchairs should be more the standard than manual ones. i know theyre more expensive etc but i feel like a lot of people who cant walk probably also cant propel themself in a standard wheelchair either. and like. sure getting someone to push you is ffffine but the lack of autonomy and dignity is. frustrating. at best.

anyway. more power chairs 2k24!