#if abled people want to use mobility aides fucking let them

[shego1142]

There’s also the social stresses of using the damn things too. To the point that if I’m not with my friends and actively using my cane, I will not use one of those electric wheelchair-carts to save my life because the second you’re in one of you move your legs or stand up to get something someone will be either yelling at you or filming you. Especially if you’re young. I once broke my ankle as a small child (about twelve or so) and this grown woman followed me around the store calling me a “faker” and saying I was taking up disability resources for using my own cane that I brought from home. She didn’t stop until I found my mom and my mom got physically between me and the woman.

And she didn’t apologise when my mom explained that my ankle was broken either.

The pressure and anxiety I feel to not ever move my legs or adjust the way I’m sitting in my manual wheelchair makes it almost un-useable, especially when I don’t have the emotional spoons to deal with someone’s entitlement to my disability.

My mobility aids DO help me, when I have the time and energy and social security to use them. But the idea that anyone uses them for ���laziness” is such the wrong way of looking at it.

It’s shaming a feeling (“Laziness” actually being a lack of a specific type of energy) instead of looking at the reason the person is lacking that specific energy to begin with.

I mean, it’s not anyone’s business why someone is using an accommodation. You are not entitled to know why someone needs a mobility aid, why someone needs sensory processing aides, anything.

But like, if you want a peek behind the curtain, I’ll go ahead and say, yes sometimes I do use mobility aids because I’m what some people may call “lazy”

Because laziness doesn’t fucking exist. Lazy is just a made up term for “You’re not doing the activities I think you’re capable of so therefore I think it’s because you simply don’t want to, and I’m not going to look for any other underlying reason why you don’t want to.”

Oftentimes, when I do use them, I use wheelchairs or electric carts in stores because of my sensory issues, not my mobility issues. I have both, but it’s the sensory issues that can make things worse for me, nine times out of ten.

Using a mobility aid so I don’t have to feel my shoes and socks, so I don’t have to count my steps, so I don’t have to hear myself walking, so I don’t feel the way my pants brush against my legs, etc

So I don’t have a meltdown in the middle of a store.

Anyway I just wish the term lazy would die.

Sure I’m definitely lazy, if we’re defining lazy as “exhausted by dealing with chronic pain all the time and just want something to be easy.”

I’m lazy if we’re defining it as “I can walk but I just don’t want to walk because walking hurts today.”

Lazy either doesn’t exist, or it’s not a bad reason to use a mobility aid.

The one and only bad reason to use a mobility aid is if you’re planning on purposefully destroying the thing you’re using and it doesn’t belong to you.

But who actually does that? It would cost thousands if not hundreds of thousands to replace one of those electric carts, why would anyone ever bother?

And more people using them regularly actually signals to the company that they need to purchase more!

Idk this post went some places but like just let people use mobility aides omfg

The idea that someone would willingly choose to use a mobility aid without actually needing it due to being "lazy" is really absurd to me because of the amount of work and physical energy needed to use aids that people just do not think about.

If you use a cane, you now only have ONE arm to do things like hold bags or open doors--how many trips do you want to take to bring groceries in again? If you use 2 crutches, or a walker, guess who doesn't have ANY hands free? Manual wheelchair user? Guess who has a horrific time getting food from cafeterias or restaurants because you only have a lap? Oh you have to drive somewhere? Time to think about storage and whether you have the energy to lift your aid out of the car unless you had the thousands of dollars to spend on a ramp! Electric wheelchair? Time to not be able to go out unless your chair is charged, also btw the space underneath manual chairs has been replaced by battery/components ;). Oh no! A tall curb. Time to make a 10 minute detour. Time for your upper body exercises so you can even move in things like manual chairs or crutches for any extended period of time and/or up any sort of incline. Etc.

[gregmarriage]

claustrophobia combined with agoraphobia, is the stupidest shit in the world. like, oh, you’re going actually insane being stuck in the house all the time, due to your disability? oh, here’s sickening anxiety about leaving the house, like, wow, well done brain 👍🏻

[genderqueerdykes]

poverty is so isolating. it means being alone and away from people, events, society. you can't afford trips to and from places. you can't afford to spare gas. you can't afford the entrance fee. you can't afford tickets. you can't afford making eating a social event. you can't buy drinks. you can't engage in hobbies.

all you're encouraged to do are "free" things, but they're not free. Internet isn't free. cell phone service isn't free. sitting on the computer and your phone all day is frowned upon for good reason because it destroys your health. we shouldn't have to only be able to talk to people digitally to be able to socialize. we shouldn't have to watch streams all day. we need to see other people, i DON'T care if it costs a few dollars: poor people shouldn't be relegated to what few free activities there are because most of them involve being alone.

the library is one of the most annoying suggestions because it makes you feel pinned. yes i want to support my local library. i cannot sit still and read in public. it is not socially acceptable to start taking to strangers in the library in fact you can't have conversations there at all because you need to be quiet for the other readers. libraries are places of education, accessibility to information and resources, and social services. it is not a place to socialize. maybe entertain but Only if you can, well, read. i have dissociative disorders and unmedicated ADHD, i don't make it very far into books. i feel like most poor people get really tired of the library suggestion. it's an amazing resource. but it's not for this purpose

social events are almost always off limits. sure you can go to the bar and not drink, if you don't have alcohol trauma, aren't a recovering alcoholic, aren't overstimulated by noise, aren't photosensitive, don't have anxiety with crowds and strangers, aren't a minor, have an ID, and can walk there or get a ride there. sure you can walk to the cafe and use their Wi-Fi but this isn't a social activity and in many places you can't sit there for long periods unless you buy anything.

i get SO tired of the "go to a cafe" suggestion. think about how boring that actually is. you're alone. in America, it is NOT socially acceptable to sit at a strangers table like it is in other countries, let alone just start talking to them. it is NOT a common experience to strike up a conversation with strangers in cafes in America, like we really have cafes other than fucking starbucks to begin with.

going for walks and going to parks is not accessible to people with physical disabilities, agoraphobia, some schizophrenics, people with dog trauma, and other issues. parks usually have really poorly maintained or no sidewalks or foot paths. they can be uneven and hard to traverse for people who use mobility aids. unless you live near a monument or state park, your local parks are really meant for dogs to piss and shit in, for joggers to run through, and to look impressive to investors. they're usually pathetic swaths of grass with you guessed it, nothing to do. again it's rare to strike up conversation at the park. people need conversation starters. there's Nothing going on at the park. it's a great place to go if you need to cool down when angry or stressed, but it's fucking boring.

window shopping is pointless and dehumanizing. i really can't stand it when people suggest poor people window shop so we can think about things to buy when we have money ... why the fuck would i ever do that. when i don't have money i don't think about frivolous things i don't need. what the fuck kind of activity is window shopping, that's for people who have money.

poor people get tired of doing the "free" shit. if you suggest that a poor person should do these things when you do none of them yourself, you have 0 clue how boring and dehumanizing it is to never be able to decide what you do with your time. to have limited options to live. to experience.

money is not the reason you get to experience; you get to experience because you are alive. no poor people don't deserve to sit there and do nothing all day because they didn't "earn" anything. no poor people don't deserve to live their lives because they don't make as much as you. poor people deserve to enjoy being alive. poor people get to decide to have fun with their money, too.

I'm so tired of people being so harsh on people who struggle with financial issues and spending money "right" or "smart". reckless spending and difficulty managing finances are symptoms of mental illness and neurodivergence. bipolar, personality disorders, schizophrenia, anxiety, autism, ADHD, OCD and other mental health conditions can make managing funds very hard. don't be extra cruel to someone who spends money poorly in response to a mental health crisis. this won't make their situation any easier.

i sat in apartment after apartment for a decade doing nothing. i was a total shut in because i had no money. i never did anything but browse the Internet. all day long. without end. i was dissociating constantly. my anxiety was at its highest. i was constantly psychotic. instead of going out to fix it, i would stay inside longer, making it worse and worse and worse. i never bought anything. i didn't have hobbies. all of my decorations and possessions were from my childhood, my clothes were literally falling apart, a decade old. my walls were barren. my world was grey.

don't do this to yourself. don't tell yourself that you deserve nothing because it's harder for you to make money than other people. I'm very lucky now that i have made friends who pulled me out of my shell and have helped me get outside of my house. i spent so long alone and trapped indoors thinking it's the only thing i could do with myself for years. I'm finally recovering. if you're poor you deserve to live. you're alive. and you're not alone. i love you.

[trans-axolotl]

content note: this post talks about eugenics, incarceration and institutionalization, and violent ableism

tangent from that post because i didn't want to start writing an essay on someone else's post and this is about a conversation i had irl this month, not intended as a reply to that post. but i actually feel very complicated about the idea of whether or not we should be pushing for more "accessibility" in jails and prisons and psych wards and institutions. i put that word in quotes because i don't think there is ever a way that being incarcerated is actually accessible to our bodies and minds; it is a disabling experience on so many levels. i'm not going to list out all the reasons why on this post; i've made so many posts talking explicitly about the harms of institutionalization before and i don't want to do that again right now. Talila Lewis has given several interviews about ableism, incarceration, and disability that are really worth reading and go more in depth into what that violence looks like. Liat Ben Moshe has also given another interview about disability and incarceration that goes over many of the same topics. given that these places are intense sites of violence towards disabled people, it feels difficult for me to claim that they could ever truly be accessible in any meaningful sense of the word.

what's also true right now is that institutions and prisons are incredibly inaccessible for physically disabled people in particular. i've been arrested with a wheelchair, i've been institutionalized with a feeding tube on top of that as well, i've been held on medical floors for psych treatment before, and i know very well exactly how bad it is. i've watched myself and so many other physically disabled people almost die in these places because of sheer neglect. i have physically disabled neighbors who were killed in these places. it is so dangerous for physically disabled people who are locked up in these places, yet at the same time, often psych wards are so inaccessible that physically disabled people just can't even be admitted because wards refuse to take people with mobility aids, medical devices, specific types of medication or care needs, if you have some kinds of terminal illness, and on and on and on.

what's also true is that when these places are so inaccessible that many physically disabled people are excluded and unable to even access them in the first place, it doesn't mean that we then somehow access other types of care instead. it just means that we're also discarded and left to die. this also is a really similar dynamic for a ton of other marginalized groups that get excluded from psych care--many of my comrades who are people of color have also experienced this same type of denial of care. initially i think that can seem like a confusing contradiction--how is it that psych wards are locking up some people up against their will but refusing to take in other people? but when you start thinking about the underlying logic at the core of these systems, it makes sense.

psych wards operate under this idea that madness must be cured by any means possible, up to and including eradication. institutions are a way of disappearing madness from the world--hiding us away so that we don't disturb a sane society, and not letting us free again until we either die in there or are able to appear like we've sufficiently eradicated madness from our mind. preventing physically disabled people from accessing inpatient treatment is operating under the same assumptions--except that this particularly violent convergence of ableism is happy to just let us die, both because it eradicates madness from the world and because they view our lives as unworthy of living in the first place. eugenics is still alive and well in the united states and it's still fucking killing us; both inside institutions and outside of them.

i would never tell someone that they're privileged for getting institutionalized--i think that would be a cruel thing to say to someone who has just survived a lot of violent ableism. and at the same time, our current systems of mental health care are set up in a way where not being able to access inpatient care can be a deadly logistical nightmare. there are some partial hospitalization programs that have such a long waiting list that you can only really get in if you just got an urgent referral because you're getting discharged from inpatient care--how the fuck are physically disabled people supposed to access those programs? if you need meal support for your eating disorder 6 times a day and the only places that offer that are residential treatment in a house with stairs, what the fuck are you supposed to do? if noncarceral outpatient forms of treatment like therapy, support groups, PHP programs, peer support funding, etc etc etc are often prioritizing people who have recently been discharged from inpatient care, how are you supposed to access any type of mental health care at all? (to be clear i know that not all forms of outpatient care operate in this way, but a lot of state run/low cost programs that accept Medicaid/Medicare operate in that way, and i've seen it cause enough barriers that i know this is a very real problem.)

so when i think about what it would take to actually ensure that physically disabled people can access mental healthcare, there's a lot that comes up for me. on one hand, so much of my work is about tearing down institutions and ensuring that no one is forced into these places to face that type of violence. on the other hand, so many physically disabled people need care right now, and we have to figure out some way of making that happen given the current systems we have in place. i will never be okay with just discarding physically disabled people as collateral damage, and any world that we're building needs to be one that embraces disability from the beginning.

i keep thinking about the concept of non-reformist reforms that gets talked about a lot in the prison abolition movement. the idea behind non-reformist reforms is that usually, reforms work to reinforce the status quo. they're usually talked about in liberal language of "improvement" and "human rights", but when it comes down to it, they're still giving more power to harmful institutions and reinforcing state power. an example of a reformist reform is building a new jail that is bigger and has "nicer" services. or when the cops in my city tried to get funding for more wheelchair accessible cop vans. these are reformist reforms because when it comes down to it, it's still giving more money and legitimacy to the prison system and increasing the capacity to keep people locked up--even when people talk about it using language about welfare for prisoners, that's not actually what's happening. having more wheelchair accessible cop vans would be dangerous for the disabled people in my city--it's helped us out a LOT that it's so difficult for the cops to arrest multiple wheelchair users at once.

non-reformist reforms are the opposite of that--they're reforms that work to dismantle systems, redistribute power, and set the stage for more even more dramatic transformations. They're sort of an answer to the question of "what do we do right now if we can't go out and burn down all the prisons overnight?" Examples of a nonreformist reform are defunding prisons, getting rid of paid administrative leave for cops, shutting down old prisons and not building new ones, etc. they're steps we can take right now that don't fully abolish prisons, but still work to dismantle them, rather than making it easier for the system to keep going.

so, when we apply this to the psych system, what are some nonreformist reforms that could help make sure that all disabled people are having their needs met right now? Some ideas I'm having include fixing the problem of PHP/outpatient care requiring referrals from inpatient, increasing the amount of Medicaid/Medicare funding for outpatient mental health care, building physically accessible peer respites that allow caregivers to stay with you if needed, increasing SSI/SSDI to an actually liveable rate, creating more disability specific mental health resources, support groups, care webs, and a million other things we'd probably need to actually get our needs met. non-reformist reforms for people in psych wards right now might look like ensuring everyone has 24/7 access to phones and internet, ensuring that disabled people have access to mobility aids in these spaces, making sure that there's accessible nutrition for people with dietary restrictions and/or feeding tubes, and more.

when i see people saying that we need to ensure that psych wards or prisons are made accessible it makes me feel nervous. i worry that the changes required to do that wouldn't actually provide care to disabled people, i worry it would just make it easier for increasing numbers of disabled people to get locked up and harmed all while people claimed it was a success story of "inclusion." i worry that it would just continue to cement carceral treatment as the only option for existing as a disabled person, and that it would make it harder for us to live in our communities, with the services and adaptations we need. when i think about abolition, i'm always thinking about what can we do right now, what do disabled people who are incarcerated and institutionalized need right now, what can we do right now to ensure that everyone is surviving and getting their needs met. i'm not willing to ignore or discard my incarcerated disabled comrades in the moment because of my dreams for an abolitionist future, i'm always going to support our organizing in these places as we try to survive them.

overall i guess what i'm saying is that i think making inpatient psych care accessible would require dismantling and fundamentally destroying the whole system. I can't imagine a way of doing that within the current system that wouldn't just continue to harm disabled people. and that as a psych abolitionist i think that means we have a responsibility to each other right now to fight for that, to understand that physically disabled people not being able to access mental health care is an incredibly urgent need. I refuse to treat my MadDisabled comrades as disposable: our lives are valuable and worth fighting for.

i'm also going to link to the HEARD organization on this post. They're one of the few abolitionist organizations that does direct advocacy and support for deaf and disabled people in prisons. if you or one of your disabled community members ever gets incarcerated in jail/prison, they have a lot of resources. donate to support their work if you can.

[sam-the-pancake]

I wasn't gonna make a post about this anymore because it resolved, but I still want to talk about it. My writing style is long and rambly so TL;DR at the bottom.

Yesterday was the first day of the college course I'm taking (I'm getting my master's in Special Education if anyone's interested). It's a class from 5pm until 8pm, and most days it's after a full day of work for me, so I've elected to mainly use my wheelchair. But since I'm ambulatory I decided to bring my cane in case I needed the bathroom or something so I don't have to struggle with the doors. This classroom of course didn't have a desk without a chair attached so as we sat in a circle I put my bag on the desk behind me and rested my cane against it.

Anyone who uses a cane knows that they fall over. A lot. I kept telling both the professor and the students next to me to please just leave it on the floor when it falls over but of course they didn't listen. They had to "help" the poor cripple. Well class ends and I grab my bag and head home. When I get to my house I realize that I don't have my cane with me to help me down the stairs to my apartment. It wasn't with my bag when I left class so I forgot it. I tell my partner that I'm going back to campus to get the cane I forgot. This is my only cane. I use it any time I leave the house. Even if I'm planning on using my wheelchair when I get somewhere I like to have the cane in the car.

In the 20min it took me to drive home and back the cane is gone. I look all over the first floor of the building without an aid since I expected it to be quick. I sit down and email the professor and campus lost and found before making my way back to the car.

AN HOUR LATER, an hour and a half after the class has ended, I get an response email from the professor and a girl from the class. The girl saw that I forgot it (I still don't know where it had been) and took it hoping to see me before I left. She probably felt like she was doing her good deed for the day. Except I have a medical exception letting me park in the teacher parking lot right outside the building, and she probably brought it to the student parking across campus in the other direction. And then when she didn't find me she didn't reach out!

If she had wanted to be helpful she should have stayed in the classroom with it, or gone back to class when she couldn't find me, and sent me an email. I know that to ableds it's just a stick, but a month ago that was my only mobility aid. I have not left the house without it for 2 years. I'm not leaving the house until I get it back. I'm in pain today because I walked around for 10min without it. She waited for me to reach out about it to let me know she had my mobility aid. And I know she waited because she told the professor she had it. If she had wanted my email she could have asked the professor for it or for my full name to look it up in the directory.

In her email she said "I was really worried someone would take it." Guess what! YOU took it! Again, I understand that it wasn't her intention, but it's the reality of what happened. She removed it from the room and didn't reach out to tell me where it was (neither did the Prof!).

Non-mobility aid users don't touch our aids! Don't move our aids! DONT FUCKING TAKE THEM HOME WITH YOU! This wouldn't have been a problem if during class people would have respected me and left it on the floor with my stuff like I said to.

TL;DR: My cane was falling over in class and the people kept touching it and eventually must have moved it. This caused me to forget it when I left in my wheelchair. Some girl from class took it home with her "so no one would take it" so it wasn't there when I returned. She didn't reach out to me so I didn't know where it was. Prof let her know I emailed asking about it. She's bringing it back to me today, but I can't comfortably leave the house until I get it back because I'm in pain from looking for it without an aid. ABLEDS RESPECT MOBILITY AID USERS BOUNDARIES AND DONT MOVE OUR AIDS OR TAKE THEM FUCKING HOME CHALLENGE

[lastoneout]

Wheelchair excitement is being more than slightly dampened by concern that either my insurance is going to deny me and I won't be allowed to pay for the chair myself because I have Medicade OR that the physical/occupational therapist and/or wheelchair assessment people will decide I don't actually need one despite my primary, who again is a former EDS specialist and is very certain my quality of life is bad enough I need one, and turn me away.

Like my mom has gotten a wheelchair through Medicaid basically her whole life and she told me that the assessment people aren't allowed to turn you down, they are ONLY there to help you decide what chair will best fit you and take the needed measurements and make adjustments once it's made, the only person who can decide if I truly need one is my doctor and the prescription is the final say, but most of the stuff I've been finding online about the process is saying the assessment people are part of the initial decision about my need for one and their say has just as much weight as the doctor writing the prescription, and I am sadly WELL AWARE of how anti-mobility aid a lot of physical therapists can be so the thought of getting that far and being shut down is concerning me greatly.

I'm also worried my insurance will only approve me for one of those manual transport/hospital drive ones that are too heavy and weirdly built for the passenger to propell themselves meaningfully on their own...I know I can fight it and one of those straight up will not work for me but still. Also I've heard Medicaid will refuse to pay for one if you don't need to use it inside the house, which I won't need mine for that plus my house is way too small for me to even use it in here at all, and I guess I could lie but eugh I am not good at that.

I probably shouldn't worry until I actually get in touch with the assessment people, and tbh when I called them earlier this year to ask what the process was they told me all I need to see them is a prescription from my doctor so I'm really praying everything goes smoothly but like shit typically does NOT go smoothly for me so I know my ass is just gonna be freaking out and over thinking it the entire time.

I just really need this chair. My quality of life is gone, it's so hard for me to even find the will to do the things I need to to regain what mobility I can because I know it will never be enough to allow me to actually do the things I want to do and I don't get to do anything fun in the meantime so I'm just depressed about this constantly, and I truly do not know how much longer I can sit here and watch my entire life go by without me. I want to be able to run errands and spent time with my family and go to museums and parks(masked ofc) and go to school and it is abundantly clear that no amount of knee braces, pain meds, and physical therapy will get me there, so it is truly cruel and unfair to say I should just not do all that because the thing that would let me do it at all is somehow "bad" for me.

I deserve the dignity of risk. I deserve to give informed consent. I deserve to be treated like the fucking adult I am who is more than capable of doing physical therapy and other exercises at home to maintain my muscles and mobility. I can be trusted to know when it's appropriate to use my aids and when it isn't. I am so FUCKING sick of being treated like a literal child by doctors who insist if I get in the chair I will simply give up and never walk again, I'm almost 30, I have self control, I'm not lazy. Every single activity I have given up, be it work or hiking or walks has claw marks in it, I am the opposite of lazy.

I just don't think I can take much more of my life being denied to me by abled people who clearly think all disabled people are lazy idiots who can't be trusted to make their own decisions. I genuinely cannot take it. If this doesn't work I don't know what I'll do.

(I think for now to temper the anxiety I'm going to write down all the measures I've tried to fix myself(PT, knee braces, rollator, ect.) and why they haven't been enough to achieve the VERY REASONABLE goals I have for myself. Also all the ways my current medical conditions limit me. That should help me feel more like I can actually convince the right people that we are well past the time that this should have been considered. Fingers crossed anyway.)

[italiansteebie]

As someone who is disabled, I am obsessed with the idea of Steve Harrington in a wheelchair or using mobility aids. Maybe hurt/comfort with Steve feeling stuck? like out in public people will treat him like a baby and dote on him like he cant do anything at all. Also established steddie?? ->

ignore me if u dont like this prompt hshs

excuse you, this was an amazing prompt and I love it.

and I am a sucker for projecting onto Steve, so lets go.

---

Steve was always in pain nowadays.

In fact, it only got worse after the bats, and he figures the exertion after the fact didn't help. Before, he could always push through, hobble along and ice his aching joints when he got home.

Though, he couldn't ignore it after his legs would only stay strong for about ask hour before they collapsed under him. He remembers the first day it happened. He'd been at the grocery store, picking up dinner for his date with Eddie. (It was fairly new, but it was strong). He'd felt a bit weak before leaving, but as always he pushed through, ignoring the dizziness and pain.

It had only gotten worse as he walked through the grocery store, and all of a sudden, he was on the ground, and the grocery store patrons were staring at him, whispering things about the Harrington name and image. The store manager ended up having to call Eddie to come help him.

"Oh, Stevie..." He sighed. He'd been bugging Steve about seeing a doctor for months in fact ever since he was healed himself, he'd been pestering Steve to go to Owens and explain to him what was going on. But he hadn't, and now here they were, Eddie helping Steve into a wheelchair in front of a crowd of Hawkins shoppers.

Steve had been covering his face, and Eddie could almost feel the shame he was experiencing. He wanted to tell their audience off, to go away, to mind their business. But he knew that would only make it worse. So he stayed quiet, and so did Steve.

"Are you okay?"

"I don't want to talk about it."

So they didn't.

And they didn't after Steve saw Owens.

And they didn't after Steve was fitted for a wheelchair.

They just... Didn't.

Until Steve had fallen again.

At Mike's house, with just the kids, who weren't strong enough to help him back into his chair, with no help from his wobbling legs. So they called Eddie, and hid in the basement after Steve had yelled at them to go away, hot tears of embarrassment rolling down his face.

--

They were home now, and again, Steve was quiet. Eddie helped him get situated on the couch, legs still too wobbly to do it unassisted.

"Steve... Lets talk about it,"

Steves head snapped up, eyes shining, "You wanna talk about it? Fine! I'm fucking useless, my legs don't work and I can't fucking do anything by myself anymore! The kids barely look at me, Robs hasn't been able to hang out in weeks, and the rest of Hawkins thinks I'm a fucking charity case! Every time I leave the house it's like I'm a fucking zoo animal. I wish this had never fucking happened! I wish I wasn't-"

"Don't say that, Steve."

"It's true isn't it? Don't you hate having to come help me? God... I just- I'm so..." The sobs crawl their way out of his throat, and he can't stop them once they start.

"Steve..." Eddie rubs a comforting hand up and down Steve's back, pulling him closer to cradle him in his arms. Steve tucked his head into Eddie's neck, letting the tears roll freely down his face. "Steve, you have every right to feel that way but... I hope you know it's not true. The kids... It's just a different dynamic and I'm not supposed to tell you this but Robin has been working on a design of the back of your wheelchair, she wanted it to be a surprise and she was worried she spoil it." He hears Steve sniffle a sort of laugh. "And baby, you cared for me every single day for months while I was healing, what makes you think I hate helping you? I'm so glad I can finally make it up to you."

Steve lifts his head, looking Eddie in the eyes, "Really?"

"Really, Stevie."

He watches Steve smile, for what seemed like the first time since coming home from that doctors appointment. "Also, with all the extra arm work, your biceps look," He pauses to do a chefs kiss, "Fantastico! That's how you guys say it in Italy, right?" He smirks, and Steve bursts into a fit of giggles, tears drying on his cheeks as he shakes his head. "I love you, Eds."

They lean in for a soft kiss, it's slow and sweet, "I love you too, Steve."

[hello-nichya-here]

I have a question that might be offensive, and I'm sorry in advance for any hurt it may cause. I've been trying to search for an answer online for a while but I'm not able to find a proper one, and hoped you could help me.

From what I have gathered, autistic people do not wish for there to be a cure for autism, which I understand because well, it would change your brain and the way you view the world. Some even insist it cannot exist (which I'm not so sure about but whatever). My main question is, there are thousands of people out there who are affected by some kinds of ASD so severe that they can never lead a proper life, will never mentally develop beyond a child, and often have to live through agonizing pain and overstimulation. When it comes to these cases, would they not prefer a cure? So wouldn't it be more ethical for a cure to exist, but taking the cure not be compulsory? Those people are obviously not on social media, so their voices go unheard. But wouldn't they and their loved ones not want them to be in pain?

Thanks in advance.

First off, here's why a "cure" is indeed impossible: autism is a neurotype, not a disease. It's not the brain or any organ/system doing something it shouldn't or being damaged by some internal and/or external factor. An autistic brain functions DIFFERENTLY, not DEFECTIVELY, though obviously there is a variety of ways in which it manifests, and it is very rare for an autistic person to be ONLY autistic, there's often one, or more, conditions affecting them at the same time (anxiety, ADHD, schizophrenia, depression, OCD, etc). It is also likely a result of multiple cromossomes working in atypical ways (unlike with Down Syndrome, which is a result of cromossome 21 and ONLY 21 working differently) - and we still don't know which ones, or even how many said cromossomes are.

What does all of that mean for a cure? It means that:

1 - To make an autistic person non-autistic it'd need to be possible to discover it when they're still a fetus and somehow force their brain and entire nervous system to form differently - both things modern science can't do and that we're not sure will EVER be possible.

2 - It is very likely that even if a cure is possible, it will NOT be a one-size-fits-all kind of deal, and it will work on some cases and be useless in others.

So it is already a far, far, FAR more complicated deal than just "If we put enough money, time and effort into it, we can find a cure." Part of the reason why many autistic people are sick of nearly every fucking charity about autism being focused on a cure is because, instead of that money going directly to us or to our caretakers (be it family or any form of hospice/home) and having a very real positive effective, that money goes into searching for a something that might genuinely not be biologically possible.

This is sadly the common history for nearly every group under the large umbrella of Disabled People. Sign Language was discouraged and even made ILLEGAL in some countries long before there were was a reliable, safe way to allow deaf people to hear. There are THOUSANDS of horror stories about people with any form of paralysis or mobility issues being just let root and die in their beds, even after all kinds of mobility aids were invented because "it's a burden to the caretakers" and a "miserable life to live anyway." A disabled athlete in Canada has recently complained about lack of accessibility and was offered EUTHANASIA as a solution because God forbid someone has to build a ramp.

The sad reality is that many non-disabled people are only interested in helping us if the help is guaranteed to make us 100% "normal." If it will gives us a decent, and sometimes fully/mostly independent life, but not make us able-bodied/neurotypical it is NEVER considerd "good enough", and is often talked about as a "set-back for the cure." Giving us ways to communicate our needs, find emotional support, employment, or at the very least multiple sources of aid that will allow our families to not be on "caretaker mode" 24/7 and to not fear what might happen to us once they pass away is considered A SET BACK. Because we're not "cured", but are also not dead.

They're focused on trying to "solve the mystery that will totally lead us to the cure IN THE FUTURE", but never on hearing our VERY basic requests for stuff that would greately improve our lives NOW - Autism Speaks, the largest autism "charity" (hate-group that literally uses "therapy" created by nazis to "help" us) literally popularized the myths that we don't know ANYTHING about autism, how it happens or how to help people with it, and making the "official autism symbol" be a fucking puzzle piece.

The "finding a cure is more important than anything" narrative talks over the needs of EVERY autistic person in existence, including the ones that cannot express their opinion or understand their own condition enough to HAVE an opinon, and yes, including the ones that actively WANT to be "cured."

And speaking of people who do genuinely want to be "cured" of their autism: it is extremely naive of you to think there's any change a cure wouldn't be made mandatory if it existed, and that the choice would be left to the individual, or even to a parent/caretaker on the more "extreme" cases.

Like I said before, things like Sign Language were made ILLEGAL in many countries for the crime of helping disabled have a better life without curing them. We still have cases of doctors operating deaf babies/toddlers without the parents consent. Wheelchair users constantly complain that people just randomly decide to "help" them by pushing their chair towards where they assume the person wants to go, without saying a word to them, without letting them change direction and sometimes even being careless enough to fuck up the chair.

Disabled people CONSTANTLY get called stupid or selfish for not opting for long, expensive treatments that will often only TEMPORARELY make them abled-bodied because being "normal/not a burden" should be more important than anything, including the completely unnecessary and often brutal emotional turmoil of getting used to a "normal" life just go then have to get used to being disabled again. And yes, autistic peoplel, from the completely indepent ones to the ones that need constant care, who have said they would NEVER take a cure for it if one existed, ALREADY get condescending, and sometimes openly hateful, comments about it all day, every day, everywhere. For saying we don't want to take the IMAGINARY pill that can "fix" us.

Our lives are already considered lesser, our opinions are already disregarded, and our bodily autonomy is already denied constantly (see the more "harmless" things like people that think it's funny to force hugs and kisses on those of us who hate most physical contact, to doctors that have injured or KILLED us through unnecessary, often violent means of restraining us during meltdowns). If a cure existed, we'd be straight up forced, or at least constantly pressured, to take it. There's a reason WE are the only ones discussing how unethical it'd be to force us to be "cured", while most neurptypicals have not even heard of that objection, and half would get mad at us for being "ungrateful" - after all, they spent so much time, money and effort on this thing (that we've been rejecting from day one), we can't just refuse it like that!

I know you probably mean well, anon, but the sad reality is that nearly every talk of "curing" autism (and almost anything that is considered a disability) is often rooted on nothing but society's very open disgust and disdain towards our very existence, not a genuine desire to make sure we're safe and happy - and as you can imagine, we're mad that we constantly have to justify our right to be alive and actually listened to, not spoken over by people who are "trying to help" by telling us to shut up and be glad that they're trying to make us "normal."

[theangelshavethephonebox]

I just found out about RTDs decision not to use Davros' past design and I have Thoughts™. I'll put them under a readmore because I know this is verging on discourse and who really wants that but I feel the need to say it anyway.

I am saying this as a mobility aid- but not a wheelchair- user, so I speak from a personal place but not with full authority on this. (As in, please do not take my voice on this over wheelchair users' opinions).

Okay, so, here's the thing. We get so little mobility aid/physically disabled representation that quite frankly even if they're nazi-allegory villains, it's still something. Bad faith rep for sure- put Davros in a wheelchair to show he must be evil, you know the drill. But back then it was all we had.

Now, Rusty wants to change his design because the original design was in bad faith. However, even if he's a villain, I'd still take what I can get.

Now, I know RTD seems to be about to change that- Ruth Madeley, for example, does not seem to be playing a villain. Maybe it's not a one-off- maybe RTD really is committed to providing good disabled rep that is done in good faith, with input from disabled people, characters played by disabled actors, the whole shebang. Maybe he really is trying to make a change.

But he should not erase a disabled character's disability just because he now has more "good" disabled rep. Davros is disabled. Erasing that disability does not improve disabled representation; doing what he's already doing, introducing more disabled rep in good faith, disabled people as people, not as "ooh this person is disabled they must be evil", that's what makes the change.

So, I really don't think they should erase Davros' disability. I hope they don't. Actually, I hope they focus on it- I hope Davros, in a wheelchair, is confronted by a physically disabled main/recurring character, preferably also in a wheelchair. I hope they have that conversation. I hope this wheelchair user tells Davros:

'As a disabled person, you should know, better than abled people, that what you're doing is wrong. You should know, most of all, that we have to fight for life, not destroy it'.

I hope that the past is not erased, but used to have a real conversation about the past and present, one that could actually have an impact on the future.

Tldr; I really hope they let Davros stay disabled and use it to bring up why it's so fucked that before recently he was the only kind of disabled rep we had. Well, that and "pitiable inspiration porn".

@a-wartime-paradox

[headpainmigraine]

I've seen too many posts from disabled people feeling shame for being angry now, and I've had enough of it.

I see too many posts from physically abled people disregarding the lived experiences of physically disabled people because we're angry.

Part of cripplepunk is that we don't shrink ourselves into the timid, sweet, smiling good little cripple that the ableds want to see, like it's a mystery to them.

Part of cripplepunk is letting yourself be angry.

Chronic pain causes structural and functional changes in our brains.

Induced migraine onset caused immediate personality changes in patients who entered the study clinic polite and chatty only to become surly, aggressive and withdrawn.

And even if you think all of that is bull, look at the world we live in.

Look at the things able-bodied people say in the comments of any physically disabled person's vent blogs.

Look at the world that isn't made for us.

how we can't get wheelchairs into shops,

how we're put in real danger by people parking like twats,

fighting sloped pavements,

fighting lack of public seating,

no hearing loops

no Braille

having to rely on underpaid undertrained part time staff to use the lift or get to the second floor or get through the back door because the front one has a single step

fighting dirty looks and abuse when we use the disabled seating on the bus or the train,

and people who still don't understand why we "have to be so mean."

Infantalised, dehumanised, objectified, forgotten, forgotten and again forgotten, and able-bodied people have the gall to tell us "you don't have to be so rude."

Dismissing our point of view because we didn't present it politely enough for them.

These people who don't think twice about making last minute plans, booking holidays, taking public transport, just popping to the shops, fucking hydrating, but still think we're being unreasonable when we tell them that medical supplies aren't toys and shouldn't be treated or used as such, yeah, regardless of supply.

We're forced to work twice as hard to be just as productive as coworkers with half the good will from management breathing down your neck about your sick days.

Trying to find employment with no luck, finding employment and not being unaccommodated in the workplace, being fired, trying to claim benefits via a long humiliating process, being denied, and appealing, and being denied, and going to tribunal to have a crappy decision overturned, only you've had no money for half a year and then some.

And even seeing other physically disabled people with the "luxury" of mobility aids fitted for them, and high quality care, and support, and being seethingly angry, not because they have something you don't, but because those things are seen as luxuries.

Because our basic standard of living as defined by the government (any government) is "struggle and die"

I'm not saying lashing out at others is fair, or that being angry all the time is healthy - there are therapists out there who deal with people in intractable chronic pain who can help with that kind of thing

But I AM saying, don't be ashamed of being furious. Don't be embarrassed to be angry.

Because do you think those motherfuckers could live our lives with the serenity and sweetness and politeness that they demand from us?

[pokichusramblings]

Long post, but abled people really need to hear this. This focuses on ablism. The TLDR is that people’s judgement of disability aid causes actual harm to those who need disability aids.

Please be kind to people who need any sort of mobility aid! Whenever we’re somewhere where we do a lot of walking, I have to constantly pester my partner to use his cane, or else she will simply suffer all fucking day.

I have become very perceptive to their signs of discomfort so I can ask “Hey, babe, do you want to grab your cane?” This usually happens multiple times before he actually retrieves his cane. That is if she ever pulls it out.

Sometimes the only thing that will convince them to use their cane is seeing someone else with a cane.

And before you assume that the days they don’t use his cane are simply “good days.” This is not true. He told me once after a long, fun day at a theme park that at the beginning of the day she was too embarrassed to use her cane, so he let herself suffer. That is until we had to sit down because waiting in a line caused her physical pain. I talked through their worries and slowly convinced them to use their cane. Told them that if anyone did anything judgmental because of her disability, I would fight for his honor (/hj).

I bring this up because so many people take disability aids lightly, or put so much unwanted attention on anyone who uses them. Especially if someone can, for example, walk without their aid but chooses to use it to manage pain (the case for my boyfriend). Even if it is needed, people still focus so much on that that it becomes the only important part of them. It is so embarrassing to use a disability aid in public, because it feels like people are staring at you and judging you.

It is possible to treat disability aids like a normal everyday occurrence, you know. Prescription glasses are, by definition, a disability aid. I need to wear my glasses to drive (by LAW). Reading without my glasses can give me headaches if I don’t give myself frequent breaks. I can’t even watch TV without my glasses. They are a disability aid. But nobody treats it like a tragedy, or stares at me, or points at my glasses, or tries to steal my glasses as a shitty prank, or tells me that I “don’t *really* need them.”

Treat canes like we treat glasses. Treat insulin patches like we treat glasses. Treat wheelchairs like we treat glasses. Treat AACs like we treat glasses. Treat noise-cancelling headphones like we treat glasses. Treat working dogs like we treat glasses. Treat crutches like we treat glasses. Treat hearing aids like we treat glasses.

Do not stare. Do not mock. Do not point. Disabled people are humans like the rest of you.

Be kind.

Edit: reblog and tag any disability focused blogs you know to spread the word. This shit is unfair and I am angry and I want everyone to know how to treat people like my boyfriend like, oh idunno, humans!

[gotta-pet-em-all]

hello rotomblr attached is a 40k word essay on canes and other mobility aids you will read it and this is a threat

See. I wouldn't do this, though.

The thing about activism, the thing that you guys need to know, is that burnout will kill you. You absolutely cannot dedicate yourself to every single cause, it will fucking destroy you.

You find one thing you're good at. And you do it. And the rest comes naturally, yknow? Don't let guilt consume you. It's a vast world, but you're not the only one out there who wants to help. You connect with community, you find intersectionality

I'm not going to make you guys read massive essays. I might be autistic on main about this stuff, but I hope that it's in a more accessible way. Activism isn't meant to be scary and intimidating!!! It isn't meant to ask you to give up your life and build houses in a foreign region! It should be about asking you to thoughtfully examine your own community and build connections and make it better.

If you take away one thing from this post? If you learn one thing from this post, and nothing else?

Ambulatory mobility aid users (cane users, forearm crutch users, people with specialized braces, anyone who uses an assistive device to walk) need to sit dow more than abled folks do. Give them your chair, offer them a seat, check in with them. Ask yourself, is this trail accessible for someone, or does it need more benches? When you attend a public event, does it have seating?

Congrats. You've learned one thing that will change your worldview and make you a better ally for disabled folks.

[aureliacetinn]

gerodi la forge differently designed

(image desiption

Gerodi la forge without vizor eyes unfocused going in slightly different direction, wearing his yellow uniform standing stoic but proud, the spectrum the vizor lets him see from (or should only read thread as to why I think that) it refracting of his face as the effects  surrounded him a lil like he being beamed up to a ship.)

Embrace the spectrum of blind/V.I eyes artists!, embrace the nuance of disabilities people!

Gerodi la forge is a complicated representation for the blind/chronic pain  community though probably more positive than most but still falling under the technology ruining the nuance of disability.

So I wanted to draw him and show a more accurate(imo) portrayal of his eyes without the visor to 1 cuz white clear eyes trope annoys me

2 to not want to hide blind person eyes as media often tends to do (minus sunglasses needed for blind actor due to sensitivities)

3 cuz they cause pain and so he should have them off more often.

to note a lot of what im going to say is written way better an documented better by janet jay a lot of my sources are from here amazing piece on gerodi you should read: https://www.janetjay.com/what-star-trek-got-wrong-about-geordis-disabilities/ also if you in blind community are fine with his eyes portrayed as more cataract, that’s valid too.

So gerodi la forge for me as a avid star trek fan was important, hey I can exist if he can he not been erased!  Buuuuuuuut,

 it did urk me that 1 he was kinda a lil nerdy creep trope that never got a gf which levar burton himself has called out as racism from the shows writers (sources at bottom of thread) id also argue ableism also and many able bodied people treat disabled people as sexless.

 but also that he never got to be disabled really, he suffered from chronic pain form the vizor but kept choosing to not take pain pills or treatment, which you know that’s some inner ableism right there I did to myself as a teen, and I kinda think gerodi reinforced it a lil in me,

“look where he is, he deals with the pain he never shows it”

Not a great message really, gerodi never is allowed to show the struggle they choose that the vizor existing was enough, and yes we got that amasing ep where he didn’t want to be fixed, but that would then be countered by never showing the struggle. Women at warp did a great ep where on disability karrisa mehr calling gerodi a disabled version of a “manic pixie dream girl” feels very apt.

Never allowed to complain just be quirky gerodi.

And on to the vizor

The vizor is complicated , it apparently let him  see much of the EM spectrum", ranging from simple heat and infrared through radio waves” now I personally am all for mobility aids that have cool attachments but it’s a delicate balance of unique features and fixing and or making them more powerful than able bodied colleague-cuz thats fixing, and I feel gerodi with how show wrote it and portrayed him it was a magic fix more than an aid, why I chose to only show the thermal spectrum in image, instead of how it apparently can see everything more than human eyes can anyway which yeh defeat aid purpose.

image of vizor silver sem ring over eye with gold lines across not fullyblcokign vision 0

and it gave him chronic pain, they choose this as a balancer, okay…but then never portrayed it just did to show how gerodi overcame his disabilities and gets on with it like a good soldier. So yeh im mixed on it. They made great use in ep when it was hacked by cardassians this is the cool thing you can do with mobility aids (unless you just destroy them, fuck you then) and that was interesting for the time, but um then in he insolence of office the ebook gerodi forced to have his vizor REMOVED so he can stay in star fleet as its now a security risk- NOT OKAy you could have just had a redesign or a arc of gerodi having to fight for it if you must but no , brain surgery remove this part of you!!

(gif desicription men seeing tea they drink is funky to show how gross what they did to gerodi waas)

so yeh my ending take is gerodi is complicated overall that’s still a positive over most disabled rep in sci-fi but many mistakes were made and some part of gerodi was harmful and picard sure as hell didn’t address that. They show his eyes now but its still the white cloudy trope and knowing its for awful reasons kidna ruins that. So I hope my art here just shows his potential and blind eyes diversity, but opens up discussions in not fixing and overcoming can be toxic and that

pain is part of a disability its part of the rep and it sucks

this is very important to remember when depicting disability that there’s nuance guys.

Thank you

Levar burton on gerodi: https://boundingintocomics.com/2021/12/15/star-trek-the-next-generation-star-levar-burton-says-geordi-laforge-never-finding-love-was-racist-those-white-men-who-wrote-the-show-had-an-unconscious-bias-that-was-on-display-to-me-and-to/

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

Greer (keeper of tumblr famous cats Pangur and Grim) was talking about how much they enjoy walking now that they're off crutches from an injury. I didn't want to interrupt their simple post about the little joys of life with a deep dive into physical disability and mobility aid usage but I do want to talk about how absolutely true it this is and how it applies to mobility aid users.

Someone who is 100% able bodied or 100% recovered from the condition that caused them to need a mobility aid won't enjoy using a mobility aid. Even people who are still experiencing some level of pain or disability won't enjoy using a mobility aid. I use the mobility aid that I would consider the physically easiest to use, which is a group 3 powerchair. I don't have to walk using my legs or push using my arms, I don't even have to hold my own body upright if I don't want to. And let me tell you, I will still choose to walk when I can. It's not often, but if I can go to the mailbox or run into a store myself I do. The world was built for people who are an average amount wide and long (this can also pose an issue for fat people, but I digress). It was not built for someone with extra width and length from a mobility aid. Cars were built to be stepped out of, meaning my chair needs a (expensive, annoying) ramp to get out of our car. Thresholds were made to be stepped over. Stairs were made to be climbed. Our bodies were also not built for mobility aid use. I love that my chair lets me move when I would otherwise be couchbound, but it's not the same as moving my body unassisted. My body is designed to absorb the shock from each step on uneven ground in a way that even the best wheelchairs can't. My body is designed to climb inclines my chair couldn't dream of. My body easily steps over small obstacles, slides through narrow spaces, and creeps up quietly to get a closer look at a bird. My body releases chemicals when I move it that aid with my mood, digestion, pain, and general wellbeing. Mobility aids are inherently limiting compared to walking unassisted, the reason we use them is because walking unassisted isn't an option or will cause significant pain or illness.

You can certainly have the wrong mobility aid for your level of ability, have it poorly adjusted, or be using it wrong, all of which would warrant medical concern. But I think that we need to remove "I'm worried you'll overuse your mobility aid out of laziness" from the world forever, because mobility aid use takes more work than just walking, and is less enjoyable. A truly lazy person would just walk. I know, because I am incredibly lazy, and I sometimes choose to walk distances I know will fuck me up because using my chair is a hassle. My chair is freedom for me when I am otherwise unable to walk, not for an able-bodied person who is almost never unable to walk.

[kittycak3s]

This is gonna get long lol don't feel like u gotta read all this, just venting about my wheelchair + disability stuff for a bit (both good and bad)

I know there's a level of advantage that I have by being ambulatory that many wheelchair users don't but the fact that it's not safe for me to use my wheelchair in this hell house literally makes me want to cry

I miss my wheelchair so much. Even with my last living situation like I was treated terribly but I miss the comfort and freedom that came with having my wheelchair 24/7. Not having to constantly be afraid of being injured. About how I'm gonna be able to bathe, go downstairs to eat, just little basic things that I didn't have to think about to the same extreme prior to becoming physically disabled.

My wheelchair made me feel so safe, like I remember the first time I sat in it and it started to click how badly I needed it and how this would completely change my life I immediately cried lol

What's fucked up though is the way I'm literally treated *so much worse* in public because of my chair. People are more openly hostile. WAY more comfortable putting their hands on you without bothering to ask for consent. Will straight up tell you you cant enter their building / business or refuse to let you on buses

Yet almost every single time without fail when I say this around someone who doesn't use mobility aids (because I've unfortunately heard this from many other disabled people as well, as sad as that is to say) the response is to report them or sue them.

If I followed that advice there would never be a day that goes by where I wouldn't be in some kind of lawsuit. It would be a full time job. Like you don't understand just how *common* this is. When we say that ableism is unavoidable, we mean it.

I know a lot of wheelchair users would disagree but personally I really really wish more people would actually stand up for us.

I've felt so much safer when someone would intervene and tell someone to shut the fuck up or get away from me. When they accompanied me just to get where I needed to go (exiting / entering buildings etc) because I was being harassed. Reporting the ableism they'd witnessed. Even just staying near me to chat with me and keep me company was so comforting. The bar is literally in hell but like even when people just treat me like a *person* and don't constantly bring attention to my disabilities it means everything to me.

I hate job corps with every fiber of my being, but I miss the friends I had there so much. The people who'd ask to push my chair just because they had fun doing it instead of thinking I'm incapable of doing so myself. The people who would always be respectful with how they spoke to me and actually acknowledged *me* as a person. I hope they're in a better place now. Most of the staff were truly evil people but a few of them, and some of the students I'd bonded with are people I still think about all the time.

I don't expect you to be perfect, all I ask is that you treat me like a person and don't make it all about you if you make a mistake. It's okay to fuck up. The smallest gestures make the biggest difference sometimes.

I absolutely adore the people who care enough just to make sure we're physically + mentally okay, and who actually acknowledge the ableism we deal with on a regular basis. Thank you. I wish more people like that existed. The bystander effect thing is definitely a huge issue and god it really crushes your sense of hope

[dissociacrip]

this is only a vaguepost just bc i don't wanna start an argument w/ the person who said this or anything but i wouldn't say wheelchair is a last resort for POTS, but maybe that's just me.

i don't just have POTS i also have low muscle tone + other shit, with the combination of my health problems the reason that i bought a wheelchair, and yeah it depends on how someone's POTS affects them, but that statement doesn't sit well with me. i think that's fair to say for people w/ non-severe POTS as their reasoning for wanting a wheelchair (let alone wanting to be a full-time wheelchair user), but not POTS generally. not everyone with POTS is a faint/fall risk, but in the case of somebody w/ a history of fainting/falling, a wheelchair makes the most sense to keep from busting your head open.

a portable seat also doesn't make sense to me personally because say, i'm in a store or standing in line, or at a museum. something where someone who uses a portable seat would have to sit down, get up, sit down, then get up again in order to move. that seems like something that would just aggravate the hell out of POTS. that's part of the reason why i personally opted to a wheelchair instead of something like a rollator.

my previous cardiologist left and i stopped going to him anyway because the insurance co-pays with an EKG being done every time were absurd. i'm only trying to see one again now because i want to check in with someone about the ataxia, altered consciousness (i do not wanna call it brain fog bc that is sugarcoating it), coathanger pain, and slurred speech - and that all gets progressively worse the longer i'm upright since i only recently pieced together my POTS was the culprit since, for w/e reason, no one in the POTS community seems to talk about that stuff very much (mainly just fainting, dizziness, brain fog, etc.) i couldn't get on ivabradine because the fucking red tape made me want to rip my hair out. i can't find my other compression sock and there's only so much that would do since hypotonia and other stuff also comes into play that affects my tolerance for being upright and walking for extended periods. i generally don't have a lot of resources or options in the current life situation i'm in.

the fact they also make it painful for me to sit for extended periods makes the wheelchair thing funny.

idk...i don't think there's an epidemic of people using mobility aids (let alone something as difficult to use and acquire as a wheelchair) when they don't really need them in some sense. wheelchairs and rollators and crutches are usually things that take up a lot of space and make accessing many aspects of public life difficult. unless someone had something else going on w/ them i can't imagine somebody using a wheelchair super often for an extended period of time unless they needed it. my cane isn't good for me, but it was easy to get, and i was desperate for any kind of support at the time i got it, even if it makes me walk worse because i'm using it as something to lean on for the most part. if someone is using something like a transport chair even i'm gonna assume that they're doing the best they can with what they have before assuming they don't know what they're doing.

i think people sometimes give bad advice about mobility aids, that people should make informed decisions, and that the ideal is to be able to go to a doctor about it and have a see a PT who's trained for that kind of thing, but that's never a guaranteed thing. generally, the recent attitude i've seen around mobility aid usage is uncomfortable. it verges almost on a kind of intra-community healthism for me in a way i can't really articulate at the moment.