chronicillnessproblems:
marauders4evr:
See, the problem with people who aren’t in wheelchairs writing about and/or drawing people who are in (manual) wheelchairs is that the people who aren’t in wheelchairs tend to think that there’s only like four movements that you do in a wheelchair. You can either push forward, push backwards, turn left, or turn right. And the characters do it all while sitting up straight or bending forward so that their noses touch their knees.
But the amount of motions that I go through on a daily basis are actually amazing. And the body language…you could write an entire book on the body language of someone in a wheelchair.
Like right now, I’m more relaxed, so I’m slouching slightly. I’ve got my right foot on its footrest and the left foot on the ground. Every so often, as I stop to think of something to say, I’ll push with my left foot to rock the chair slightly.
But usually, I sit mostly upright with my upper-half slightly leaned forward. When I’m wheeling across the campus, especially if I have somewhere that I need to be, I’ll lean and shift my weight in whichever direction it is that I’m going. It helps make the wheelchair glide that much more smoothly. How far/dramatically I lean depends on how fast I’m going, the terrain, if there’s a turn, etc.
Plus people who don’t use wheelchairs don’t understand the relationship between grabbing the wheels, pushing, and the chair moving. Like I’ve seen things written or have seen people try to use a chair where the character/that person grabs the wheel every single second and never lets go to save their lives. Which isn’t right. The key is to do long, strong, pushes that allow you to move several feet before repeating. I can usually get about ten feet in before I have to push again. It’s kind of like riding a scooter. You don’t always need to push. You push, then ride, then push, then ride, etc.
And because of this, despite what many people think, people in wheelchairs can actually multitask. I’ve carried Starbucks drinks across the campus without spilling a single drop. Because it’s possible to wheel one-handed (despite what most people think), especially when you shift your weight. And if I need to alternate between pushing both wheels, I’ll just swap hands during the ‘glide’ time.
I’ve also noticed that people who don’t use wheelchairs, for some reason, have no idea how to turn a wheelchair. It’s the funniest thing. Like I see it written or, again, have seen people ‘try’ a wheelchair where they’re reaching across their bodies to try to grab one wheel and push or they try to push both wheels at the same time and don’t understand. (For the record, you pull back a wheel and push a wheel. The direction that you’re going is the side that you pull back.)
Back to body language. Again, no idea why most people think that we always sit upright and nothing else. Maybe when I’m in meetings or other formal settings, but most of the time, I do slightly slouch/lean. As for the hands…A lot of writers put the wheelchair user’s hands on the armrests but the truth is, most armrests sit too far back to actually put your hands on. There are times when I’ll put my elbows on the edges of the armrests and will put my hands between my legs. Note: Not on my lap. That’s another thing that writers do but putting your hands in your lap is actually not a natural thing to do when you’re in a wheelchair, due to the angle that you’re sitting and the armrests. Most of the time, I’ll just sort of let my arms loosely fall on either side of the chair, so that my hands are next to my wheels but not grabbing them. That’s another form of body language. I’ve talked to a few people who have done it and I do it myself. If I’m ever anxious or in a situation where I want to leave for one reason or another, I will usually grip my handrims – one hand near the front , one hand near the back. And if I’m really nervous, you’ll find me leaning further and further into the chair, running my hands along the handrims.
Also, on a related subject – a character’s legs should usually be at 90 degree angles, the cushion should come to about their knees, and the armrests should come to about their elbows. You can always tell that an actor is not a wheelchair user when their wheelchair isn’t designed to their dimensions. (Their knees are usually inches away from the seats and are up at an angle, the armrests are too high, etc.) Plus they don’t know how to drive the chair.
Let’s see, what else? Only certain bags can go on the back of the chair without scraping against the wheels, so, no, your teenagers in wheelchairs can’t put their big, stylish, purses on the back. We don’t always use gloves since most gloves actually aren’t that helpful (as stated above, wheeling is a very fluid motion and gloves tend to constrict movements). Height differences are always a thing to remember. If you’re going for the “oh no, my wheelchair is broken” trope, nobody really has ‘flat’ tires anymore thanks to the new material for the wheels but it is possible to have things break off. We use the environment a lot. I always push off of walls or grab onto corners or kick off of the floor etc. Wheelchair parkour should really become a thing.
This is all of the physical things to think about. I could write a thesis on the emotional treatment of your characters with disabilities. But for now, I think that I’ll stop here. For my followers in wheelchairs, is there anything that I left out?
Also why isn’t wheelchair parkour a thing? Somebody make wheelchair parkour a thing.
I have a power wheelchair so a lot of this is very different for me (and I feel like non-elderly in power chairs are represented less too (but I could be wrong.))
But yeah- include problems like people in public who don’t realize that my 300lb wheelchair doesn’t stop on a dime (it’s actually a safety feature for people without good balance, there aren’t breaks and it won’t jerk to a stop or else some people might fall off it or get hurt by the jerking) so if you walk in front of my wheelchair while I’m moving, or stop in front of it, there’s absolutely nothing I can do to not run you over. (this drives me up the wall in public places, like in stores people usually have personal space but museums and zoos no way.) Also kids will actually climb on your chair in public places like aquariums and museums.
Canceling plans because of a “flat tire” not so much, but I’ve had to cancel plans because my wheelchair lift broke last minute and my chair wouldn’t go in, and I’ve had it die out in public because I didn’t charge it enough. (Thanks CJ for being there that time and pushing it for me lol.) I also had it randomly say it was dead though it had a half full battery, and just stop working every two feet- so like all electronics, who even knows.
And all that stuff about holding things in your hands or carrying bags gets easier in a power chair, plus you can get extensions to hold cups or water bottles or even cell phones. (Though I have a phone holder and it’s obnoxious, it just makes my chair bigger and makes it hard to get through chairs.) Provided you have a power chair with controls used by hands and have use of both hands, it’s easy to hold one thing and use the other hand for the controls. Not so easy to use the wrong hand for the controls though. I also have hangers and handles on the back of my chair (though the airline broke my favorite handle last time I flew and I’m not strong enough to fix it…) so it’s designed for shopping bags and such, but also really helps when I go places with friends and we all have bags and I can very easily carry them on my chair (or lap if they’re small) but again that’s only with giant, 300 lb type power chairs. (and I wouldn’t do it somewhere I was worried about pickpocketing.)
And yeah, tons to say on the emotional side of disability and how your other characters treat their disability too, but that’s a different story.
Also don’t forget that most people who use wheelchairs can stand or walk at least a little.
And also that there’s a very sizeable number of manual chair users who use their feet to push their wheechairs, either partly or fully. Like, there’s an entire kind of wheelchair specifically built to be pushed with the feet, because it’s such a common thing to do.
And when you push with your feet, you’re using the opposite muscles to the ones that you would use to walk with. I used to really wish I could challenge every single person who told me “Why don’t you just get up and walk?” to a race in a foot-driven wheelchair. Unless they specifically worked out those muscles for some reason, or walked backwards everywhere, they would not make it a block before getting exhausted and out of breath. Because most people don’t even use the muscles involved very often at all. If someone’s pushing a wheelchair with their feet, it’s because they need to. Not because they’re too lazy to stand. It takes far more effort to foot-propel a wheelchair than it does to walk, unless you have a condition that makes you need the wheelchair.
That actually goes for almost all wheelchair propulsion methods though, whether it’s manual chairs or power chairs – unless you need the chair, it’s far easier to walk. Not that there would be something wrong if using the chair were actually easier. But generally using a chair takes a physical and/or cognitive toll that’s much higher than walking is for someone who actually could walk. So if someone’s deliberately using a wheelchair, it’s almost always because they need it badly enough that their need to use it outweighs every possible inconvenience of using a wheelchair.
Including the inconvenience of ripping up the innards of your joints so badly that you render them unusable over time. One reason powerchairs are becoming more comonly used, is because even people who are in very good physical shape and can push a manual chair with relative ease (and I say relative ease, not ease, because it’s never truly easy) are in great danger of permanently trashing their joints through long-term use. People are just not designed to push wheelchairs long-term. So more and more often, people are being given powerchairs to save their joints.
And that’s when you don’t have a disease affecting the joints. I have a friend who has rheumatoid arthritis and uses a wheelchair, and she’s ripped so many tendons and ligaments in her legs that she can’t push a manual wheelchair and has even lost a lot of walking mobility just from the long-term effects of the wheelchair on joints that are already under stress from an autoimmune disease.
Also, generally by the time someone needs a powerchair badly enough to actually deliberately go out and get one, there’s a good chance that even driving the powerchair is exhausting on either a cognitive or physical level. When I got my powerchair, I had really bad stamina problems from a combination of myasthenia gravis and severe adrenal insufficiency (both undiagnosed at the time – with treatment I don’t need the powerchairr at all for the moment). I was in bed close to 24/7 and used the powerchair when out of bed. And I remember clearly that even going out for a few blocks in the powerchair was more exhausting than walking miles and miles ever was before I needed a wheelchair of any kind. Like, if you are not disabled you have no context in your mind for the kind and level of exhaustion I’m describing here. Like if you ran a marathon you still wouldn’t be that exhausted – you’d be run down for a short period of time, but it wouldn’t affect you on every level the way actual medical fatigue causes, nor would it endanger your life the way it can when you truly run out of energy in a way that your body can’t replenish. (In my case, partly through running through my stores of cortisol without being able to make more of it rapidly enough to sustain life long-term. So I could literally get so tired I could stop being able to breathe, or pump blood properly, if I wasn’t careful. When I say you have no context for this without having been severely ill, I really mean it.)
So don’t ever assume that because someone is sitting down, they’re not working. if they’re using a wheelchair, they’re working in ways you likely never have to work. You’re used to thinking of sitting down in the context of sitting in a regular chair or a couch, not sitting in a wheelchair. Sitting in a wheelchair means sitting in something that you can move and sit down at the same time, and that means you can get quite the workout doing so. And even sitting in a powerchair means doing a fair bit of work.
Oh and as far as the work that goes into driving a powerchair – to negotiate even vaguely uneven terrain without doing things like tipping over sideways, you’re doing things that would normally be involved in kinds of driving that even able-bodied people find taxing. Like, imagine you’re driving a car on ice after a combination of snow and sleet have been falling. That’s everyday powerchair driving for a lot of people. Because negotiating even a good sidewalk takes a fair degree of effort, and negotiating a bad sidewalk takes a huge amount of concentration and effort to avoid falling over, jarring yourself, or getting stalled or trapped at various points. Some people end up risking their lives driving their powerchairs in the street just to avoid bad sidewalks, that’s how hard it is. And a number of people die every year from getting run over because of driving in the street to avoid either sidewalks they can’t get onto in the first place because they’re wheelchair-inaccessible, or sidewalks that are so hard to drive on that they’d rather risk death than drive on them. And yes, you read that right – driving on many sidewalks is so difficult that many wheelchair users will risk death rather than do it.
Also, using a scooter is generally harder than using a regular powerchair, so don’t act like scooter users are just lazy. I don’t know where people get the idea that scooters and powerchairs are driven by different types of people, or that “real” disabled people can always obtain a powerchair and only “fake” disabled people get scooters, but if you say these things, you’re full of shit and need to stop. You simply don’t know what you’re talking about, I don’t care if you’re disabled or not (and in this context, it’s worse if you are, because you’re basically throwing your fellow disabled people under the bus for not having lives identical to yours), you need to stop picking on scooter users.
Which reminds me, a lot of people pick on scooter users who are fat, especially. They assume that they use scooters because they’re fat. And a lot of people pick on other wheelchair users who are fat, too, regardless of the type of wheelchair. The assumption is again that it’s easier to use a wheelchair than to walk, and that wheelchairs are just a sign of the laziness that fat people are assumed to always have.
The reality is, as far as I’ve observed anyway, and many other disabled people I know have observed this too – wheelchair users often seem to be at the extremes of both ends of weight. Far more often than nondisabled people are. And while I don’t know this for sure, a lot of us have speculated along these lines: Generally if you’re disabled enough to need a powerchair, one of two things is going to happen. Either the inactivity is going to lead to at least some degree of weight gain. Or else something about your disability actively prevents a lot of weight gain, which is likely to lead to your being skinnier than average anyway. Hence, people in powerchairs often being either very fat or very thin, but less being of average weight. In most cases, if there’s any correlation between our weight and our disability, it’s that we’re fat because we have a condition that makes physical activity difficult (and may affect our metabolism of food, as well), not that we use a wheelchair because we’re fat.
If you’re not fat, you probably have no idea how much or how little being fat affects your mobility. For most fat people who are healthy, it doesn’t affect your mobility much at all until you get pretty extreme in weight. Like, I’m fat – 5’2″ and 220 pounds, roughly, so well into the realm that doctors consider ‘morbidly obese’ (I hate that term), but not too far outside the norm for fat people. Like, I have many friends who are much larger than I am,, who deal with a whole other level of weight discrimination than I’ve ever encountered. (Although for whatever reason, people who see my photo online tend to add about 100-200 pounds when estimating my weight, regardless of what my weight is at the time. Maybe they think I’m taller than I am. I don’t know. Maybe it’s something about weight distribution on my body, which is certainly not evenly distributed.)
And anyway, even at my heaviest (245 pounds), my weight did not impact my mobility in any way whatsoever. It didn’t make me out of breath, it didn’t slow me down, it didn’t put any noticeable wear on my joints, it just didn’t affect me. My disabilities did enormously affect my stamina, which in turn had some effect on my weight. But my weight itself did not affect my stamina, despite being much heavier than is normally considered a healthy weight for my height. You really have to get pretty heavy, as a healthy person (or even in many cases as an unhealthy person) before your weight affects your stamina in any direct manner.
Most skinny people (and some fat people) are totally unaware of that and think that being even slightly fat makes you get exhausted at the slightest movement. Or they confuse being out of shape (in terms of stamina – like the kind of out of shape that makes you get out of breath from a short walk), with being fat, and attribute being out of shape to being fat. When you can be out of shape and thin, or have very good physical stamina and weigh 300 pounds. There’s not necessarily any correlation there.
Not that it would be acceptable to be nasty to fat people over mobility issues if being fat did cause them. But generally speaking, most fat people aren’t fat enough for being fat to have a direct impact on their stamina or mobility. And if you are fat enough for it to actually have that effect, then that is a totally valid reason to use a wheelchair. (And this would be true even if it was possible to 100% control whether you were fat or not the way many people imagine you can. There’s tons of health conditions that are far more the person’s fault than being fat is, but that don’t carry the same stigma when people use a wheelchair for them. Like lots of people with spinal cord injuries got them from reckless behavior, but most people don’t assume that their injuries were caused by something they did, even if they were! But if you’re fat enough to need a wheelchair for it, everyone assumes there’s something you could do about it, even though for most people, there isn’t a lot you can do long-term about your weight. It’s just that being fat is looked upon in a way that spinal cord injuries aren’t, in this society.)
But for the most part, being fat won’t cause a person to need a wheelchair in the first place. Because of two things. One, as just discussed, it’s hard to get fat enough to need a wheelchair for it. Most fat people just aren’t in the extremely high weight range where being fat significantly affects your ability to walk. Two, using a wheelchair is taxing enough that unless you badly need one, it’s easier just to walk, even if you’re moderately out of shape. Like, you really need a high level of stamina problems before using a wheelchair becomes an easier option than walking is.
As I said, it would be wrong to hassle people for needing a wheelchair for being fat, no matter what the reality was of why people needed the chair. It’s just that it becomes especially ridiculous to bug fat wheelchair users for “laziness”, if you understand anything about either being fat or using a wheelchair. Most of the time, a wheelchair user is working harder to move the chair than you will ever work in order to walk.
Also, if you’ve ever tried out a scooter inside a store and think that gives you any insight into how easy it is to use a scooter or powerchair outside a store, you’d be wrong. Stores generally have a layout that makes navigating them in scooters relatively easy. There’s still a learning curve if you’re not used to the scooter, but as far as terrain goes, you’re in the best that’s available. Driving a scooter or powerchair in outdoor terrain is a totally different experience than driving one inside a store that has perfectly flat ground, wide aisles, usually climate control, and a bunch of other things that make it much easier. Outdoors, without any of that, is a whole different ball game.
So like… it’d be wrong to bug wheelchair users for laziness regardless of why we were in chairs, or how easy it was to use a chair. But using a wheelchair is much, much harder than it looks, so it’s especially ridiculous to consider it lazy. It’s sort of like considering it lazy to ride a bicycle. And don’t even get me started on the way nondisabled thin people can use a car to drive two blocks without being considered as lazy as a fat person in a manual wheelchair is considered. Even though the chair user is doing far more work on an ongoing basis just to get around, than the person driving the car is doing either while driving or while walking.
So bottom line… it’d be wrong to pick on wheelchair users for laziness regardless of the reality of the situation. But given the actual reality of the situation, it’s not even remotely realistic, let alone ethical, to judge wheelchair users as lazy. It takes so much work to move a wheelchair that for nondisabled people it’s almost 100% of the time easier to walk.
And yeah, I haven’t got into anything about wheelchair users who get pushed everywhere by other people. Even though that was something that was true of me towards the very end of my wheelchair use, just before I got properly diagnosed and treated and stopped needing a chair. So briefly:
That situation is so inconvenient – you have no direct control over where you go – that it’s very rare for a person to allow anyone to push them if they have a viable alternative. A lot of people being pushed in chairs, either have an extremely severe disability but without the money to get a powerchair they can use (if such a thing even exists for them), or are people with temporary injuries who haven’t built up the strength and stamina to push a manual chair with their arms and/or legs, or are elderly people with severe stamina problems or physical frailty that make it not very feasible to push themselves on a regular basis. Again, it’s a situation where unless the benefits greatly outweigh the downsides, people aren’t going to put up with it, they’ll just walk or otherwise propel themselves. If you’ve never been pushed in a wheelchair long-term, you don’t know how inconvenient it is to have so little control over your own movements.
And like… I still remember what things were like for me towards the end. When there were a lot of times I would need to not only be pushed, but be pushed in a specialized kind of wheelchair that tilted me back and laid me as flat as humanly possible. It was basically like a hospital bed on wheels. And by the time I needed people to be pushing me in that, even going out and being pushed was physically exhausting.
And again, by physically exhausting, I’m talking a level and kind of exhaustion that there is no context for in the life of an able-bodied person. I’m talking about so exhausting that it could wear down my ability to breathe or carry out other basic vital functions. And even disabled people with stamina problems that are “merely” exhausting without being life-threateningly exhausting, are likely experiencing a level of stamina problems that don’t have a context in the life of an able-bodied person. Clinical fatigue is not the same thing as being tired, not even very tired. It’s unfortunate that the language we use for being tired is the same language we use for medical problems resulting in fatigue(1), because they are not the same experience, either objectively or subjectively. Many of the worst misconceptions about people with fatiguing disabilities have come about because people fail to distinguish between fatigue and being tired.
So yeah, that’s probably more than you ever wanted to know about why it’s exhausting to use a wheelchair. But I figured people know as little about that, as htey know about how wheelchair users physically move their own chairs, and why.
And it’s still weird to not think of myself as a chair user. I haven’t used a chair in a couple years now I think, but I used one for so long that I still identify strongly with being a chair user.. I still experience my legs in a way that I don’t think able-bodied people ever do – it’s like they’re magic things that move me around effortlessly. Like literally they just keep going underneath me and I get where I’m going, and it feels so weird to just be able to think and appear where I’m trying to go. I don’t think anyone can appreciate how weird that is unless they’ve had the experience of how difficult it can be to move a wheelchair around, and then actually been in a wheelchair for years and never expected to not need one. The feeling of being outside of one after that is just strange – not bad, but thoroughly and completely strange.
*****
(1) Just to clarify something that people get routinely confused about (skip this if you’ve heard me describe the difference between adrenal fatigue and adrenal insufficiency before): I had adrenal insufficiency leading to physical fatigue. I did not have adrenal fatigue. Adrenal insufficiency is a well-established and life-threatening medical condition resulting from problems making enough cortisol. It is caused by problems with either the adrenal gland, the pituitary gland, or the hypothalamus (or some combination). Mine is mostly from the pituitary gland and possibly a little from resulting problems with the adrenal gland over time as well. And mine is very severe – by the time it was diagnosed I had too little cortisol to measure.
Adrenal fatigue, on the other hand, is a diagnosis created by quacks to make money off of sick people who have problems that mostly don’t have anything to do with the adrenal system. The quack blames the adrenal system, takes their money, and gives them treatments that range from ineffective to harmful while failing to diagnose and treat whatever is actually wrong.
Quacks often deliberately blur the line between adrenal fatigue and adrenal insufficiency in order to make themselves sound more legit than they are. But even without them doing that, it can be confusing because adrenal insufficiency can result in fatigue, and if you’re not well-versed in the terminology… it’s just very easy to get confused. So adrenal insufficiency is a real diagnosis that’s not even remotely controversial among doctors, and adrenal fatigue is an extremely controversial diagnosis with no scientific evidence to back up its existence.
(Although it’s applied routinely to people who are genuinely sick, ‘adrenal fatigue’ is just not the reason they’re sick. Worse, some of them have actual adrenal insufficiency and the adrenal fatigue diagnosis makes it hard for them to get the real help they’ll need to survive. Which is one among many reasons the adrenal fatigue thing makes me so angry.)
Given that there are a lot of people with BIID who use wheelchairs daily over walking because it helps them psychologically, I think this is pretty good evidence for the fact that BIID is a real and serious thing as well.
Clearly, they wouldn’t do that unless they had to. It’s not a choice for them any more than for physically disabled people; at best, it’s a trade-off between agonies.
Brinens and Things 