“Despite all of that, I don’t “look” disabled… there are no visual cues that I am plagued by chronic pain and fainting spells.
…I can’t help but mull over my experiences with non-disabled people doubting me as I’m en route to meet the photographer for this shoot. Will Sean be able to grasp the nuances of my disability? More importantly, will he care?”
Since I don’t see this all that often, but part-time wheelchair usage is a thing and these are things I learned as someone who uses a wheelchair part time. (Please add to it if you think of things!)
*Not as many people as you think are watching you get out of your car to walk to where your wheelchair is to get in it.
*Chances are you have only a manual one- this can be hard on your arms. It’s okay to ask for help from someone to push. But it’s just as okay to yell and make a big deal when they push without asking (Then asking them 4 minutes later to push you. Wheelchairs can be emotional things- it’s okay to be emotional.)
*It’s okay to get up from your chair occasional. You don’t have to “pretend” that you can’t get up from your wheelchair. Everyone is different. You don’t owe ANYONE an explanation.
*Don’t be embarrassed about telling family members or friends you need the wheelchair. Chances are they WILL forget. They won’t mean to- but this is new for them and even more part-time for them. It IS okay to insist on bringing the wheelchair. Even on short trips.
* This is an important one I had to learn. IF ITS HARD FOR SOMEONE TO PUSH YOU. Say a hill, or something. DON”T JUST SAY “I feel bad” AND GET UP AND WALK IT. IF ITS HARD FOR THEM TO PUSH YOU. THAT MEANS IT’LL BE JUST AS HARD TO WALK IT. You are in that wheelchair for a reason, don’t feel guilty.
*You are NOT faking. Part-Time wheelchair usage is OKAY to do. You are not exaggerating your symptoms, you are not pretending you are worse than you are. Everyone’s story is different. You do not owe anyone an explanation.
“You are too young to be disabled,” they say. You age. “You are too young to be disabled,” they say. You age. “You are too young to be disabled,” they say. You have changed. They have not.
You see a flight of stairs. Your friend insists there are only a few. You don’t see an end. You are tired. There are too many stairs. You don’t see an end.
The door has an accessible entrance sticker. It is not accessible. You tell them so. They insist it is. You try to explain. They point to the sticker wordlessly.
You tell people there is no cute for your disability. They whisper. Soon everyone is whispering. You do not know what they are saying but you hear the word ‘yoga’.
You need an ice pack. You get one. You immediately need another. This has been happening all day. Or was it all year? You try to remember and you cannot think of a time you did not need an ice pack.
You stand up from your wheelchair. People gasp. Your disability has magically disappeared. You sit back down. Your disability returns.
You never notice people using canes. You get a cane. Suddenly you notice them. They’re everywhere. The number of canes grows. You chalk it up to your imagination, but you wonder if it really is growing. Soon, everyone will use canes.
You do not see yourself in magazines. You do not see yourself in movies. You do not see yourself on tv. You do not see yourself in books. You start to fear that you do not exist.
A person asks you what your disability is. “I don’t know,” you whisper, “no one knows.” They stare at you confused. You have never known.
You sleep. You are more tired. You don’t sleep. You are more tired. You go out. You are more tired. You stay in. You are more tired. The moon waxes. You are more tired. The moon wanes. You are more tired. You think about whether these things are related. You are more tired.
[disclaimer: you don’t have to identify with all of these in order to reblog (in fact I don’t expect most people will) but please do identify with the cripple punk movement as a whole! or if you’re reblogging for a friend tag that you are and you’re able bodied. Also please tag for unreality and depersonalization if you can! Feel free to add on]
okay, i’m just putting this out here because it needs to be said and i’m sick of letting the bullshit train continue when i could help stop – or at least bring attention to – it. i have a friend who is diplegic and therefore uses a manual chair (her twin was also quadriplegic and in a motorized chair) and when we watch movies with wheelchairs in them, we like to critique the designs.
do you know why mcavoy couldn’t/can’t drive his motorized wheelchair? BECAUSE THE FUCKING WHEELS ARE ON THE WRONG WAY. HANK MCCOY, WHO IS SUPPOSEDLY A “GENIUS”, DESIGNED THE WHEELCHAIR SO THE BIG WHEELS ARE ON THE FRONT AND THE SMALL WHEELS ARE ON THE BACK.
LOOK!
LOOK AT THIS ABSOLUTE BULLSHIT. DO YOU KNOW WHY HE CAN’T DRIVE IT? THE SMALL WHEELS ARE AT THE FRONT BECAUSE THEY ARE SMALL AND THEREFORE ALLOW FOR LOTS OF FINE CONTROL, AND THE BIG WHEELS ARE AT THE BACK BECAUSE THEY OFFER POWER. WHEN THE BIG WHEELS ARE ON THE FRONT IT IS SO DIFFICULT TO CONTROL WHERE YOU ARE GOING. IT’S LIKE WHEN YOU WALK BACKWARDS ON A BIKE AND TRY TO STEER STILL WITH THE HANDLEBARS. I SAT BACKWARDS ON MY FRIEND’S MANUAL CHAIR AND TRIED TO WHEEL MYSELF. IT WAS LIKE COMPLETELY REWIRING MY MOTOR SKILLS EVERY SECOND I WAS MOVING. IT. IS. BULLSHIT. AND ALL OF CHARLES’ CHAIRS ARE LIKE THIS!!! HANK!!!!! WTF!!!!!!!
ALSO. Charles would have THE WORST backpain from that stiff-ass unnecessary fuckin metal backrest that goes all the way up. YOU KNOW HOW PEOPLE’S BACKS GET UNCOMFORTABLE WHEN SITTING FOR HOURS ON A LONG PLANE OR CAR RIDE???? YOU KNOW THAT FEELING??? THAT FEELING IS THIS CHARLES’ LIFE, OKAY. HIS BACK HAS TO BE UNNATURALLY STRAIGHT ALL THE TIME. THIS CRITIQUE IS TAKEN FROM MY FRIEND’S EXPERIENCE BECAUSE SHE ALSO HAS A HARD BACK CHAIR AND HAS BEEN TOLD SHE’S GOING TO HAVE AWFUL BACK AND SHOULDER PROBLEMS BECAUSE OF IT. YET HARD BACKS ARE STANDARD AND SLING BACKS – LIKE THE ONE I’M GOING TO SHOW YOU IN A SECOND – ARE NOT! THIS IS BECAUSE THE WHEELCHAIR-GETTING SYSTEM IS COMPLETELY BROKEN AND IT’S SOMETHING YOU SHOULD REALLY CARE ABOUT BUT IT IS A RANT FOR ANOTHER DAY). THE POINT IS, CHARLES’ BACK IS ONE HURTIN’ UNIT IN THIS CHAIR I GUARANTEE YOU. HE OBVIOUSLY DOESN’T NEED IT FOR TRUNK CONTROL. HE HAS AMAZINGLY FREE RANGE OF MOVEMENT ABOVE HIS HIPS. THIS CHAIR IS B U L L S H I T. HE CAN’T DRIVE, HE CAN’T SIT UP IN A COMFORTABLE WAY. POOR BABY IS H U R T I N G but right, Hank’s ~~a genius~~
In contrast, look at this chair!
Look at those tiny-ass wheels on the front! The user of this could spin ON A DIME. It’s Nice as Fuck. Look at that back. (Okay I’m not 1000% certain it’s a slingback) but it doesn’t go all the way up the user’s back! That’s some free-range-of-movement-let-your-spine-do-almost-anything-it-wants-shit right there. Since Charles pretty clearly has full use of his trunk in the movies, this would make much more sense. Also, Ann (friend) and I really don’t see why he would want an electric wheelchair when he clearly could have a manual one that allows for even more control.
AND OKAY, all wheelchairs should be specific to their users. Some people need more back support. In Ann’s quadriplegic brother’s chair there was a neck brace and little wing things on the side that came out and clamped around his body. Some people’s foot rests need to go out like Charles’ does (whether or not he requires this is kind of foggy, espc. since the overall design is so. asinine.). Some need their footrests to be more in like the orange chair. Some people get tilted wheels, some people don’t. (Also the process for deciding this is bullshit – on government insurance they will only build your chair with the assumption that you will never leave your house and therefore it’s almost impossible to get ‘add ons’ like sling backs and tilted wheels and under-the-seat brakes WHICH SHOULD BE STANDARD, AGAIN, BECAUSE IF YOU DON’T HAVE THEM YOU COULD HAVE MORE MEDICAL ISSUES DOWN THE ROAD OMG THIS SYSTEM IS SO BROKEN).
But I think we can ALL fucking agree that your wheels should go on the goddamn correct way so you can, you know, steer. And that maybe your chair should be designed more like a mobility assistance device than a fucking 1860′s gentleman’s club wingback for no goddamn earthly reason.
SHIT this stuff gets me riled up.
wow this is really interesting and makes a lot of sense! New headcanon is that Charles only uses the ridiculous X-chair when he’s teaching a class but the second he has spare time he settles into a wheelchair like the one below and just goes “aahhhhhhhh”
@spiftynifty is absolutely right, I was about to criticise his wheelchair as well, but then I noticed that he uses a completely different one when he is actually outside with Hank and Summers brothers (sorry for super bad quality)
Let me reblog this with an addition because YOU SHOULD STILL ABSOLUTELY CRITICIZE HIS WHEELCHAIR. Yes, he uses the manual wheelchair outside. Wanna know why?
Regular motorized wheelchairs are REALLY REALLY heavy. Charles’ motorized chair, even if its a light weight alloy, is made ENTIRELY out of metal. It’s probably too heavy for wheeling through gravel and across the lawn. He would sink. Also, let me re-iterate, ITS WHEELS ARE CONSTRUCTED ENTIRELY TOO POORLY TO HAVE ANY CONTROL WHATSOEVER. THE *WHEELS* ARE GODDAMN METAL, IMAGINE WHEN ITS ICY OUTSIDE. YEAH. YEAH, IT’S NOT GOOD. And when it’s not icy and he’s trying to wheel across the grass with those stupid-ass wheels – into the pond he goes. Also, Hank put the motor like one fucking inch off the goddamn ground so when the HEAVY WHEELCHAIR inevitably SINKS………. Yeah. Charles is up the creek without a paddle.
As for this manual chair, it is also subpar. Although the wheels are mercifully in the right place, it looks too small for him. The wheels need to come up higher so that when he wheels himself, the rim grips are right there. Also, his arms should be able to go back pretty far on the wheels. Where they are now, you can only get a little bit behind your hips (again, speaking from experience). The high back on this chair AGAIN restricts his movement in this aspect. Charles probably will have shoulder pain that may result in surgery down the road with this chair (because it looks SO MUCH like Ann’s chair and that’s exactly what Ann has been told will happen to her).
Second of all: I understand you’re just trying to make canon work and are not being bad people (please believe me, I know this), but absolutely no disabled person should have to switch chairs for mobility purposes multiple times a day. These chairs should be built for every day needs.Is wheeling on carpet a bitch with a manual chair? YOU BETCHA! Easy fix: take away the rugs; it’s Charles’ house. Is it more exhausting to go up hills in a manual? Oh my god, I don’t know how people do it, it is the worst. But maybe that’s a struggle that should be shown, instead of magically having him transfer to a new chair whenever a new problem arises? Think: would you like to cart around 47 different mobility devices that you would have to transfer in and out of just because your house and/or your chair, is not built for your life convenience? Maybe they should just build the chair better.It is a part of Charles and it always will be. BUILD. IT. BETTER.
Charles is lucky enough to be a multimillionare with his own lab/engineer to build chairs for him. Hank is 100% capable of making a chair that would defy any disabled person’s wildest dreams. Except…. it’s apparently more important that we just make the chair “look cool”. Never mind that 1. It doesn’t, 2. WHEELCHAIRS THAT WORK FOR DISABLED PEOPLE ACTUALLY CAN LOOK COOL TOO!! WHAT A CONCEPT.
I am just sick and tired of the way disabled people are portrayed in film and media 99% of the time. Wheelchairs are not sick gadgets to do whatever the fuck you want with. They are actual mobility devices that millions of people use, and truthfully representing the lives of those people is important. And hey, wheelchairs are fucking cool! They don’t need art direction to make them be chill! They just need good design, that again, reflects the ACTUAL LIFE the character lives. These are MOBILITY ASSISTANCE DEVICES. They are their legs. It is completely impractical and inconsiderate to think that a disabled person should just hop from chair to chair whenever the need arises.
Well, that was almost a spiritual experience. Thank you for that, madneto. I learned a ton from your righteous wrath.
Once again, this post provides a handy guide for first-time wheelchair users for what to look for in fit.
Random aside that highlights the individuality of wheelchairs… I absolutely can’t use a manual wheelchair to propel myself because the problem that makes walking difficulty means that repetitive stress on my arms and shoulders is equally problematic. Like it’s easier for me to walk than use a manual wheelchair and that’s not saying much. For me the magic “perfect” chair would have to allow me to be upright or almost fully reclined, while allowing indoors, outdoors and stairs. As it is, I mostly stay home, use electric carts in grocery stores, and if I must travel, we rent a scooter and I end up in pain anyway due to the posture it requires. Thankfully I can still walk short distances, usually. But the right device is the difference between being housebound and being in the world.
This stupid joke on Cheezburger shows people in wheelchairs at the World Cup who have stood up to cheer with the caption “Miracles Happen Every Day at the World Cup!”
I know this is a joke but it’s part of this trend to call anyone who uses a wheelchair but can also walk, a fake.
Paralysis is really not the only reason someone is in a wheelchair. There are many, very legitimate reasons to use a wheelchair that don’t involve someone not being able to stand. A wheelchair is a mobility tool for people who have trouble with pain, fatigue, balance or joint problems not to mention broken bones or dislocations. Most of these people can stand up and even walk a short way this does not mean they shouldn’t use a wheelchair. People really need to get this. The media (and I know this is not a news article but there have been some) needs to stop convincing the public that anyone who is not paralysed is not disabled.
You CAN NOT tell by looking at someone if the they have an invisible illness. You can not tell if they have heart trouble, if they have Lupus or arthritis or EDS. You can not tell by looking at someone if they are in pain.
Going to a sporting event is massively painful and exhausting. If you are running on very little energy to begin with there is no way you can manage it without assistive devices and why should people have to miss out on things they love because they are disabled? Why should going grocery shopping be something that takes all week to recover from? If walking and standing are something you take for granted then I am happy for you but it is not something I have ever done.
I’ll use myself as an example. I have EDS so my joints are prone to dislocation. Have you ever dislocated something? Have you had a bone shift and pinch a nerve? It’s not fun. My joints hurt all the time and they are unstable. My blood vessels are too stretchy so if I stand still for any length of time I pass out. My balance is terrible and I fall a lot and that causes more damage. I also have Fibromyalgia so all my pain signals are amplified and much of my soft tissue is effected. And just to make things extra difficult I have CFS/ME. I only have the energy to shower once a week most of the time. Moving around the house is often exhausting. Sitting upright can be too much on bad days. Walking around the shops is so, so exhausting. Getting to a sporting event or a concert is a major undertaking.
I look fine. I am a fat woman in her 30s who can walk and stand for short amounts of time. I am not lazy. I am in pain and running on empty and trying not to pass out.
To go to a major event a wheelchair would help stop dislocations (not entirely stop, I dislocate fingers often while driving), it would help keep my pain more managable. It would help reserve what little energy I have so I can make it through the day. I will still need a week to recover. A week of massive pain and migraines and fevers and sleeping 12 hours a night. A week where I can’t shower or cook food or do household tasks.
A wheelchair would help stop me falling over. When you have bad balance it’s hard enough to walk on your own. In a crowd it can be awful. You get bumped all the time but if you can’t correct your balance after it you fall and falling can do so, so much damage.
A wheelchair is often more suited to sitting in than a plastic chair at a sporting event. Hard chairs with no lumbar support can cause pain and muscle strain in your back and neck, they can put pressure on joints to move ways they shouldn’t, they just hurt. Sitting for hours in a chair like that is uncomfortable for anyone but for someone with underlying problems can cause massive pain and dislocations and muscle spasms and migraines.
So don’t judge that person on the scooter or in a wheelchair or parking in a disabled parking space if they have a permit. Just because you can not see any problem with them does not mean they are faking it or rorting the system. One day of joy at an even is not representative of how people live their lives. I go to the Mardi Gras parade each year in Sydney. I get drunk and take a lot of pain killers. I spend the weeks before reserving my energy. I spend many, many weeks afterwards recovering. I know how much I pay to spend the night leaning on a barrier and cheering on the parade. If you don’t see my cane you may not know I’m disabled but that doesn’t stop the pain and the price I pay. Don’t judge my life by what you see that one day. A wheelchair or scooter would be fantastic for such a big day out but they are expensive and I can not afford one.
Invisible illnesses and disabilities are invisible but they are still there! Not everyone is lucky enough to be able to take things like walking and standing and going places for granted. Remember that. Read the spoon theory by Christine Miserandino and stop judging people by what you can see. People could be dealing with all sorts of pain and complications and really struggling to have a day out or just get enough food to get through the week and comments and muttering and ‘looks’ and taunts just make it all so much worse. it’s none of your business.
knitting in the dark 