Disability binarism p*sses me off.
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This, THIS is why when I get on a bus with my scooter, I sit in it and ride, even though it's less safe, even though my scooter has tipped over on buses before. THIS is why I don't just park my scooter outside a bathroom stall and walk in. THIS is why, when I go out in public, I let people think that I'm a full-time chair user. THIS is why 99% of my college campus had no idea I can walk. Because of attitudes like this. Because of ableism like this.
The most terrifying part of all of this is it could've very well been me. When I use my chair I stand up to reach things all the time. Not so much recently because of ableist assumptions like these - it's easier to let people believe that I can't stand or walk on my own. I get tired of being called lazy, or having a bus driver tell me I "tricked" him. Can I walk? Absolutely and for sheer convenience I plan to keep it that way, even if I like rolling a lot better and it allows me to do more things. But my chair allows me to go places without worrying about my energy levels. I can zip from there to here to there without so much as a second thought and I never realized how much energy I expended walking and calculating how much of that energy I could expend before I HAD. TO. SIT. DOWN until I started using a chair. Able-bodied people just throw out "walking distance" so flippantly, because they don't know what it's like to expend so much energy into just staying upright and putting one foot in front of the other and not falling in the middle of a busy city street.
So no, it's not a freaking miracle. It's a freaking person wanting to get a freaking drink, and if you're a decent person, if you see me standing up and struggling to reach something in a store, you'll ask if I need help and if you can get something for me. If I say "no, I got it", you need to respect that and walk away, but chances are I will be grateful that I don't have to do the complicated dance of motor movements that is parking my chair in a spot that's not blocking anything or annoying other people, turning my chair off, unbuckling my seatbelt, making SURE my chair is off (because I roll around at top speed and crashing into store displays generally makes employees very annoyed with me), standing up (which may or may not involve adjusting pieces of my chair so that I have room to stand up), grabbing what I want and bringing it down without knocking anything else off the shelf, and sitting back down.
Don't delude yourselves into thinking that this kind of ableism doesn't happen or that it's not harmful. It has happened to me. More than once. And when it's being perpetuated by people who have the power to determine where your future goes....that's scary. Wheelchair users are not all the same, and more wheelchair users can walk than you think. Don't make assumptions and don't gawk at me like I'm fricking Jesus when all I want to do is shop like a PERSON.
This could've happened to me. Who knows? Maybe somewhere on the Internet it already has. Maybe I slipped once in public - broke character for just a second and stood up to reach something or walk a few feet. Maybe somewhere there's an image going around with MY face, MY chair. And that is something I dearly hope I never see. But that person in that photo is a human being, and that human being could've been me. Laughing-fricking-stock of the Internet.
Will you remember that, next time you get the urge to laugh at one of these oh-so-funny memes? I sure hope so. Because next time, it might be me.
Hi, I just wanted to let you know that I linked to this on Tumblr and it's become popular. :D http://telephonoscope.tumblr.com/post/70974211970/that-crazy-crippled-chick-this-is-what-disability
ReplyDeleteI'm in a similar position with lupus. I only use my chair on long trips like WDW. I've also had issues with people thinking I'm faking when I get up. It used to bother me until I realized that the more I let it bother me the sicker I become. Who cares what others think? They aren't paying you doctor bills and they don't live with what you live with. Stand up if you want/need to stand and tell whoever gives you additive to mind their own damn business. Good luck to you. :)
ReplyDeleteI'm pleased to have read this, I have hydrocephalus and cerebral palsy, and am very aware of being watched when I get out of my chair to do something. I'm an 'occasional wheelchair user'. I also push my chair (it's manual) and then sit in it. I often allow rail staff use the ramp, rather than be a miracle and stand up and lift it on or off myself, (actually they prefer you not to for safety reasons) so I know how it feels to feel self-conscious about the impression others may have of me. Thank you.
DeleteOh God yes! I broke a leg. I was in a cast, with orders not to weight-bear on that leg, not even a tiny bit. I didn't have the arm strength to use crutches much, but I could hop, on a walking frame - or I could use a wheelchair for a few weeks, for longer distances, when we were out and my husband could help push. Yes, I could stand up - on one leg. I could lean on the chair for long enough to get a better view, or simply to get myself on and off the pan in a disabled loo (how did they think I was managing, when I went in there alone?) There's this huge divide between "I cannot do this" and "I can do this, but it's exhausting and it hurts", and why shouldn't we use a wheelchair in BOTH cases?
ReplyDeleteYou don't have to have visible disabilities to be the brunt of an assholes disrespect, rudeness and/or bullying. NEVER EVER let Anyone stop you from living your life the way you need to live it!!
DeleteEXCUSE CAPS. VISION PROBLEMS. I HAVE DID.OR AS IT ONCE WAS CALLED MULTIPLE PERSONALITY DISORDER. THERE ARE MANY. BEEN IN THE CARE OF A PSYCHIATRIST FOR 25YRS.I ALSO HAVE SELF INJURED, BURNING WITH CIGARETTES. VERY NOTICABLE SCARS ON ARMS, HANDS AND LEGS. STARTED TO SEE A NEUROLOGIST. ..SEVERAL FOR SEVERAL YEARS. DIAGNOSIS? MS. BUT PRIOR TO ALL THAT, EACH ONE TALKED FIRST ABOUT MY SCARS. ..MOST TIMES I SIMPLY BROKE DOWN CRYING. I THEN STOPPED SEEING ANY NEUROS. FOUND ONE WHO DIAGNOSED ME AS:"99%" MS. FALLING IN STORES. NOW REMEMBER, OFTEN HAD NO MEMORY OF FALLING IN THAT STORE BECAUSE OF DID.STARTED WHEN I WAS IN MY TEENS. FORGOTTEN ABOUT. I AM 67YRS OLD. STILL HAVE DID....DOESN'T GO AWAY. STILL FALLING. MULTIPLEBREAKS IN MY BACK AND NECK. ALONG WWITH BONE SPURS. FINALLY NEURO SAID, WALKER. ONE WITH SEAT. I LIVE ALONE. AT LEAST FOR THE LAST 16YRS. SO MUCH. AND I DO NOT TAKE OPIADS FOR PAIN .I'M ALLERGIC.I DON'T DRINK ALCOHOL. I'M IN RECOVERY FOR THIRTY SEVEN YRS. I HAVE TAKEN STEROIDS EVERY DAY FOR 12YRS. THEY HAVE RUINED MY BONES. JUST ABOUT EVERYTHING. LAST YEAR , SIX MONTHS AFTER HAVING ANOTHER MRI, AND BEING TOLD INDEED WAS MS, THE NEURO SAID ON A SUNDAY AFTERNOON, I'M SO SORRY TO TELL YOU THIS. BUT YOUR REPORT WAS INCORRECT. IT IS NOT MS.YOU HAVE DEGENERATIVE BRAIN DISEASE. IT IS PROGRESSIVE AND UNSTABLE. I ASKED IF THIS WAS ALZHEIMERS DISEASE. NO.UNRELATED TO AGE. I SAID FUCK YOU AND CLICKED MY PHONE. LIMITED TIME. HAH! LONG LOST HUSBAND DID NOT BBELIEVE ME. ASHAMED OF THE WALKER. I WANTED ONE OF THOSE SCOOTERS. LOSING TRACK HERE. I AM DISABLED IN MANY WAYS. I DO NOT WANT SYMPATHY. I DON'T CARE IF ANYONE UNDERSTANDS ANY OF MY WOES. IF I FALL, DON'T TOUCH ME. IT HURTS! IF I STUMBLE AND WEAVE EXPECT A FUCK YOU IF I HEAR YOU SNICKER. IF I HAVE STICKY NOTES ON A SHIRT OR ARMS YOU MAYREAD THEM BUT DDON'T ASK. IF I CAN'T GET WORDS OUT THAT MAKE SENSE DON'T CORRECT ME.I WON'T GET YOU. IF I STUMBLE ON A WORD, WAIT. I'LL GET IT. IF YOU SEE ME AT THE CORNER STORE IN PAJAMAS, AS THIS HAPPENED WHEN I DROVE, DON'T CALL THE POLICE. I WILL TALK AND TALK.JUST AS I'M TYPING. BLAH BLAH BLAH. I SMILE AT STRANGERS. I TRY TO BE KIND. BY THE WAY, AM NOW MOVING BACK WITH MY HUSBAND. I NO LONGER CAN LIVE ALONE. BEGAN SWITCHING LATELY. BREAKING DOWN EASILY. UNDER EXTREME STRESS. THOSE WHO KNOW ME WELL ARE JUST"THERE".OTHERS ASSUME I AM CRAZY. THEY MAY BE AFRAID OF CRYING IN PUBLIC. OH LORD, WOULD LOVE THAT SCOOTER. REALLY CAN'T WALK. BUT CAN STAND FOR SHORT PERIODS. HAVEN'T BEEN IN A STORE IN 2YRS. MY GOOD FRIEND WOULD TAKE ME. I CHOOSE NOT TO FALL. TO BECOME SO TIRED OF THE LOOKS. I DO CLEAN UP RATHER WELL, BUT NO ENERGY. IT'S CHRISTMAS EVE. I'M NOT ALONE. I HAVE MY WRYLY. MY PRECIOUS FOURLEG. SURE WOULD LIKE THAT SCOOTER. THANK YOU FROM THE TEAM.
ReplyDeleteYou are a awesome. I write like you. Have challenges of opportunities - depending on the day. I am 35-40. I congratulTe your strength. I have no answers to my brain dysfunction I do know I am tired, scared and ready to surrender (not in terms of sobriety - I don't drink nor do drugs other than those prescribed and Inalways obtain multiple opinions including my choice to take Advil pm which was a big fail. See a little ramble but wanted to say thanks for share. Your mention of personality disorder is ironic because I only had one when married .... Hope the marriage is good. I prefer my 4 legged.
DeleteI am late-deafened. This means my hearing is degenerating. Because I process sound more visually than auditorily, I identify not as Hearing Impaired but as late-deafened or straight out deaf. I didn't know--before this became part of my life--that the gradient of deafness is rich and varied. Very, very few people are absolutely, completely, profoundly, hearing-nothing deaf. But many are able to hear that sound is occurring and simply unable to determine the sounds of speech. A Mild hearing loss is enough to make it challenging to hear what someone says. Deafness in terms of hearing speech occurs way before most people think "real deafness" sets it. Thank you for writing this. Thank you for bringing attention to the ranges and the singularities of what disability is.
ReplyDeleteIf it helps, I needed your explanation to understand the so-called joke. It never dawned on me what the humour was. It seemed reasonable to me that someone in a wheelchair would reach up to get something off a high shelf before returning exhausetd to her chair. Had I been there I would've offered to help and not been offended if refused.
ReplyDeleteThere will always be assholes in the world - and they breed prolifically. Sometimes they are hard to spot until they say something. But to be fair (and I speak facetiously here), you need to feel sorry for them. They will always be crippled in a far worse way than anybody in a wheelchair. No miracle of modern science will ever provide the promise of improvement or cure. Once an asshole, always an asshole. xxx
Amen.
Deletesadly, too many people are judgemental, quick to criticize! these morons are the ones who park in disabled spaces without a badge, when questioned just shrug & walk on! what a world we live in.
DeleteI use a wheelchair for long distances & a walking stick for short distances. to avoid this kind of judgement, I have my shopping delivered. try not to let those assholes get u down!
I didn't get it, either.
DeleteTrue, my husband can stand. ONLY WITH SUPPORT, he has 0 balance. So yes, he uses a wheelchair because he cannot use his walker for the WHOLE distance. Woe betide any momzer that comes up to give him a hard time. I will go "Tarantino" on their @$$, then MEDIEVAL. Such judgmental @$$hats, must be compassionate conservative republicans.
DeleteIf it helps, I needed your explanation to understand the so-called joke. It never dawned on me what the humour was. It seemed reasonable to me that someone in a wheelchair would reach up to get something off a high shelf before returning exhausetd to her chair. Had I been there I would've offered to help and not been offended if refused.
ReplyDeleteThere will always be assholes in the world - and they breed prolifically. Sometimes they are hard to spot until they say something. But to be fair (and I speak facetiously here), you need to feel sorry for them. They will always be crippled in a far worse way than anybody in a wheelchair. No miracle of modern science will ever provide the promise of improvement or cure. Once an asshole, always an asshole. xxx
Thank you for explaining what the joke was. I didn't understand it. I completely missed the point! It seems reasonable to me that someone in a wheelchair should sometimes be able to stand up to reach the top shelf. If I had been there I would've offered to help and not been offended if my offer was declined.
ReplyDeleteThere are assholes everywhere you go. They interbreed prolifically. But you should feel sorry for them. No miracle of modern science will ever improve their situation. They will always be assholes and we will always ignore them.
Great blog, thanks. Take care. xxx
I have EDS type 3 (hypermobile), which has slowly worsened over the last years (I'm 32).
ReplyDeleteIt's not too bad - yet. I can walk and do more or less the same things as I've always done, except that my energy levels have become waaaay lower, and I get creaky and achy very easily etc.
But I know it will get worse over time (EDS isn't always defined as progressive, but in reality it is, because our bodies get worn out much earlier than other people's), and I dread the day I'll be fully in that grey zone... As it is now I'm "only" contemplating getting a cane within the next few years, so as to signal on public transport that it would actually be very helpful for me to be able to sit down (I look completely normal as it is now, so all people see is a healthy, young woman who doesn't need to sit).
Thank you for writing this!
Thank you for writing this....I think your post is more concise than everything I've ever written on my own blog about living outside the disabled binary (which is why my blog is called the "Adventures of a Part-Time Wheeler." I hate the looks that I get when I stand from my chair because my experience is compounded by fat hate...like it's somehow easier to push my 250 pound ass with my arms in a manual chair than walking if I were able bodied.
ReplyDeleteI had a related situation a couple years ago. I had varying degrees of mobility, so sometimes I could walk, sometimes I couldn't, and it could change suddenly. I was taking a train, and (walking) got myself and my chair onto a car marked with a disability sign - you know, the one with the person in the wheelchair? Well, by the time the train arrived, I wasn't walkable, so I got into the chair. And waited for a conductor to come by. No luck. Finally a fellow passenger flagged one down, asking them to help me get out of the car. Their response was "this car isn't wheelchair accessible (remember the sign?), how did you even get in here?" "Well, I was walking when I got on!" They looked at me like I was crazy. :P Ended up having someone else get the chair out of the train car, and I had to scoot on my butt down the steps.
ReplyDeleteI've seen this too, both when with a friend who we had to CONVINCE to get and use a chair for those times when she hurts too much to haul her broken body around on crutches and for myself. I use a cane, but not always.
ReplyDeleteI can stand. I can walk. But I can't do it for long periods and not hurt. And once I've done it, the pain can be intense and it precludes me from doing it again.
I even have days I can make the entire 1.2 mile walk around my block. But I also have days I can't make the walk from my office chair to the bathroom.
Disability isn't an all or nothing thing...and the able bodied who have never had to live with and assist someone with mobility issues will never understand.
The lack of basic human empathy and compassion displayed by the meme is appalling. Thank you for your words.
I have fairly extensive nerve damage in both arms and have had operations to halt the damage leaving discrete scars on my elbows. Visually this is fine in the sense that I don't look disfigured (for which I am of course, very grateful!) but I don't look at all disabled.
ReplyDeleteI struggle to explain what I can and cannot do as they seem to make no sense to people. It's hard for people to understand that I can't write more than a couple of sentances with a pen but I can manage to lift weights at a push.
It can be hard enough to understand your own condition, especially if your symptoms come and go or, like me if your condition is degenerative, without having to frequently explain yourself to people in new situations.
I'm not affected to the extent of many people and I manage day to day to live a normal life with only minor adaptions and complications and many of those I've had for long enough to forget they're even part of my life.
Brilliant blog, thankyou.
ReplyDeleteI recently started using a chair, when it was pointed out to me that I avoid shopping, am worn out after seeing dog training clients, or attending seminars etc, and generally am No Fun and a recluse.
I'd actually gotten to a point where I believed I didn't enjoy doing a whole load of stuff... actually I do enjoy doing these things, I didn't enjoy being in pain and shattered from it!
I love my chair (she's called Bernard) and we go places a lot now, but I still feel awkward or like a fraud if I have to stand up to reach something or negotiate a step I don't fancy trying as a very heavy person in a manual chair (there are some big steps and scary slopes where I live!)
I am growing a thicker skin, I do get some looks, I think mainly because people see my size and assume THATS why Im in the chair and therefore I am just too idle (actually the reason i am in the chair is also the reason I am this size which is of course, no one elses business!)...
I could waffle on for days, but thankyou for posting :)
OMFG I hate this shit. Sometimes I need a cane, sometimes I don't, it is not just because I don't want to stand on the bus, and tbh, my doctor told me not to even when I don't have a cane because 2 of the 3 really bad injuries that caused my problems happened when I fell on a bus. :( People think I'm being slick because I always take my cane in the airport, but the truth is that if I have the spoons to walk unassisted as I enter the airport, I won't have them any more after standing in all those lines... :(
ReplyDeleteI'm in the same boat, with Asperger's, most assume that, with enough effort, I can think in ways they expect/assume.
ReplyDeleteBeen living in the Twilight so I can understand you're grayness
I too am in the grey area, sometimes I use a chair, sometimes a scooter, sometimes walk. sometimes I walk with a stick. And I am fat. And the neuro who looked after me after the accident that left me this was says being fat probably helped me, as protected me from more severe injury. Because of my lifestyle, many friends have never seen me in a chair or a scooter. They are stunned when they see it at my home, or when I am out. What really scares me is that you can't see the nerve damage and you can't see the extreme pain. I look normal, I am sure people think that I using them because I am fat. I get a disability payment, (I live in UK), and they are about to reassess everyone, and loads of people are losing that payment, there are lot of very frightened people who know that without the payment they won't be able to get about, or afford help with the things they need help with.
ReplyDeleteThank you!
ReplyDeleteI am disabled by lupus and rheumatoid arthritis. I can certainly identify those good days and bad days. Yes, I know those looks when I pull into a handicapped space. (I’m sixty with gray hair). The days where I can walk at the store and the ones where I assemble my scooter in the parking lot and take my time in the store until I have enough energy to go to the car and put the scooter back in the car. I have found that it is very effective to open the back of the SUV, take one piece out and then stand there a few minutes (as if contemplating the next piece) that often someone will come over and offer to help. It does help if they lift the pieces out of the car for me and then they also see how tired I am after assembling the scooter. Some days the grocery cart is enough and our local market has the same guy collecting carts every weekday in the parking lot, so he knows the customers. He will bring or leave a cart for you if he sees you pull in(and he remembers whether you like a regular basket or a smaller one, if you want a scooter from the store; he will go get it and bring it back to the car. He will also magically appear to help put the groceries in the car too!
When I first got my little scooter, I took it to the local park to practice one morning. I pulled into a parking place, got the scooter put together and took off around the park. Kids were playing, people walking dogs, others playing tennis. Had myself a fine ride as I acquainted myself with the scooter and how it handles. Got some energy back and returned to the car, a guy came running from the tennis court to help me take it apart and load it. He had watched me unload, ride around and became curious, not because I had a scooter that I was unloading and putting to together by myself BUT because he wanted information to get one for his mother.
You are amazing! I can empathize with you on so many levels, I too need to use a scooter while shopping and get dirty looks, even laughed at in stores. My legs work fine, but have embolisms in both lungs makes the simple act of grocery shopping, has sent me to the hospital on more than one occasion, so I make the CHOICE to use a motorized cart to avoid hospitalization. The lack of simple human compassion left in this world absolutely sickens me, and you have hit the nail right on the head with this blog. I hope your words may help to open the eyes of some who don't understand the implications of being wheelchair bound, what it does and in a lot of cases does not imply.
ReplyDeleteI first became aware of binarism vs the black and white view when my father had congestive heart failure. He needed to use a handicap placard and a wheelchair to park close because it exhausted him to walk--yet when he got up out of the chair to enter the car, he would get cat calls and dirty looks. Since then I know there are many conditions besides paralysis that require chair use, and things like this meme make me angry.
ReplyDeleteThank you for this post. I am able-bodied, with all five senses in working order. This is a good reminder to people like me, who may take our abled-ness for granted, that there are degrees of ability/disability. Those with any difference in ability do not have to justify themselves or apologize for themselves. And everyone, abled or disabled, should feel free to call bullshit on "jokes" like these.
ReplyDeleteWell said Melissa. I have Nystagmus, an eye condition that really limits my vision. Other than that, I appear "normal". I have people question my abilities at times because they think they know what I can and can't do. I remember how people walk, height, etc., so sometimes I can tell who is walking towards me and sometimes not. We all learn ways to cope and do the best we can. And, as a 41 year old woman who is intelligent and aware, please you ignorant people, stop asking me to get glasses. When someone says that to me, I really wonder if they think I have not already looked into that, just maybe...
DeleteAnyway, I have extremely expensive contacts that help more than glasses. But, visually impaired people are expected to have glasses, I guess. The post starting this discussion is excellent and appreciated. It is an eye opener for us all.
Thank you so much for this post. I'm affected by in on several levels and challenged by it too. I like a challenge....
ReplyDeleteI am "blind". That is to say I am legally blind but I do have some usable sight in my right eye only. I can read with high powered magnification. I can walk without the use of a white cane or dog. In fact, I even ride a bicycle, although it is a risk. But I can't 'see' what sighted people can see, in the same way they can see it. I work a great deal from memory, logically filling in the blanks with details I 'know' exist and additional information from other senses, technological enhancement (I love my iPhone for bringing things up close with a camera zoom!) etc.
I live very much in that grey zone of disability. I can't, or struggle to do many things. Yet I am also passionately independent. I am a mother, I am a telephone crisis counsellor, I am a belly dancer... I'm up for all kinds of challenges and living.
But yep, sometimes, when its windy and my hearing is impaired, I use a cane... Or in an area that is undergoing construction, or unfamiliar. But just days prior I could have been riding my bike! Different light conditions affect the whole thing too. I often wonder what people think. But I don't care most times.
Although, I am well aware that if I need to walk certain places or at certain times, I am careful NOT to use my cane. It can put me at more risk of harm than taking my chances on a stumble. For example, walking at night... To me it feels like a giant sign telling any would-be criminal that I'm an easy target. I should not have to feel that way, but I do.
So I completely empathise with your frustration when it comes to memes like this. And I empathise with the experience of being on the disabled continuum. But, and here is my challenge, if you had not raised my attention to this meme, I would have seen it and turned the corners of my mouth up and gone scrolling right on by without a second thought. I can't quite tell if my reaction is because I have been in this grey since birth and it can be different for those of us who know no different from those who acquire a disability at a later point in life. I don't know if it is that I am so easy going that it doesn't rile or amuse me one way or the other? I know I am not insensitive to the issues so it isn't that... I find my own reaction curious.
What I do know however is, that I do what suits me in the way that suits me at the time. If I need to use my telescope to read a menu board, even if I feel odd about it, I do it. If I need to ask for the sales person to tell me what's in the glass cabinet at the butcher and how much it is, I do it. If I need to rearrange the computer at the public library so I can access it, I do. And some days, I just act as sighted as I can and get on with living. If anyone questions, I tell them straight. Sometimes I tell them even if they don't ask... I meet new people and tell them that if they see me in the street and I fail to acknowledge them, it isn't that I'm being a bitch, it is just that I don't see them! I believe talking, explaining the grey, is the best way to go. I hate feeling unsafe to be blind. I want to educate people who just don't get it, on behalf of myself, and for so many others who exist on the spectrum of disability who can not or won't explain for themselves. It is hard for people to understand and they do react badly to what they perceive as a fraudulent behaviour, but how are they to learn what the grey zone is, if you don't explain it? Good on you for raising this issue!
I have had Chronic Fatigue all my adult life. I stopped telling people because I got straight up told I was lying and lazy. (and yet now, when I do what I consider a normal day's worth of chores and go to work, people tell me I do so very much- what?) At times, the fatigue shuts down my ability to even talk. It doesn't happen too often, but I have found that this job I do now - people actually understand and care, and accommodated me in my schedule. It's amazing when people understand. Sadly, they are too few and too far in between.
ReplyDeleteIs it really so hard to comprehend that one day I could easily be chopping wood, cleaning out the chicken coop, cleaning the whole house, and the next week I can barely do much more than sit in my chair and doze all day? Do other people never feel tired?
I've come to terms with it over the years - would be nice if others could as well. It's time people stopped judging others disabilities and just were kind about it.
How do they think wheelchair users transfer? I know plenty of people who cannot walk at all and would thus fit the standard "disabled" idea (as opposed to people with variable mobility levels or what have you) who can stand if necessary - particularly with something to hang on to for balance. It's part of how they move from chair to bed to toilet to whatever!
ReplyDeleteNext time I see someone being like that about someone using a wheelchair, I'm gonna ask. (I don't use a chair yet, though some days one would be nice.)
This is a very good essay. I can't totally relate to the fear of being called a 'fraud' because my disability is not total, but it's enough to make things difficult. As you say, it's hard to explain to people that yes, you sometimes *can* do stuff but it takes extra time or energy. I have "variable" vision, which means I'm legally blind in one eye and sometimes I can see pretty well (20/50 vision) out of the other eye but sometimes I can't, which makes me legally blind in both eyes. It's really hard for people to understand what that means. Mostly it means that people think I'm hilariously clumsy and distracted, which actually I'm really so quick and coordinated that they don't realize I actually can't see, which is so effing frustrating I sometimes want to yell. And using a white cane is awesome for curbs and stairs and in the dark and when it snows, and when I'm out of my usual environment but I don't need it just to walk straight ahead most of the time and people are so RUDE because they think they can get away with cutting you off or ignoring you. Arrgh! Anyway, thanks for writing this piece. I'm going to share it on FB.
ReplyDeleteI freely admit that I was in the camp that giggled a bit when I first saw the meme. It was ignorance on my part - I don't know anyone who uses a chair and I'd never considered all the gray areas.
ReplyDeleteThanks for making me less of an idiot.
Thank you for saying that!
DeleteUrgh one of my friends at uni got so sick of attitudes like this she became a secret shopper. Once when reaching for a jar in a shop the shop assistant actually gasped to see her stand up.
ReplyDeleteVery clever on your friends behalf. Would be so intetesting to see the review and follow up. Can imagine it's not something that's covered in training.
DeleteThank you for this post. More people need to understand being disabled/ impaired/etc isn't necessarily constant.
ReplyDeleteIt's pathetic to think anyone would want to fake being disabled. As if the aids were much advantage to begin with. Or as if we wouldn't give anything not to need them!
I don't have anything visible, but it sometimes hurts. A lot. Yet most times I'd rather take the pain instead of having to argue with the douchey old people on the bus that I'm just as arthritic as they are.
"But you're so young!" yeah, tell it to my fucked up foot. Cuz it was my idea to be in pain every time it rains, sure.
I am an able-bodied person, but I have certainly had times where I was so sick that I could walk just a little and that used up all my energy. I never before considered it could be the same for some people using wheelchairs.
ReplyDeleteThank you for enlightening those of us (like me) who never considered this topic before.
I was a student at SFSU back when Prof. Paul Longmore was alive. He had polio as a child and was disabled as a result. He used a chair with a ventilation system to help him breathe. His arms didn't work and he had partial use of only one hand. To sign papers he had to use a pen clenched in between his teeth. He had profound curvature of the spine and stood well under 5' tall. But he could stand and walk.
ReplyDeleteBeing able to walk doesn't mean you don't need a chair. Standing and walking were painful for him and he needed the help breathing. If he was off his ventilator for long, he had trouble, and walking exacerbated that trouble.
When people posted that meme on Facebook, I wanted to hurt them. Only an idiot assumes that all people in chairs are paralyzed. Thank you for writing that blog entry.
(Prof. Longmore wrote a great book about disability activism. It's called "Why I Burned My Book.")
I have fibromyalgia, which many doctors and medical practitioners don't believe is real, despite the mounting scientific evidence that it, indeed, is real. Few consider it to be anything of significance, yet it affects EVERYTHING in my life. I can't work, even though I'm not missing limbs, or mentally incapacitated. Getting disability benefits is much harder for invisible illnesses. So you can't do anything to try to relieve your pain, because you don't have any money to get that acupuncture, or just go out for a cup of coffee for a change of scenery. If you can't get SS disability, you can't get handicapped parking permits, so you avoid going places, for fear of not being able to handle the walk back and forth. Someone who sees you for a couple of minutes while you aren't writhing in pain, decides you aren't in enough pain to no work. They are never there when you are screaming and in tears, wishing to kill yourself just to stop the pain. This is what disability binarism looks like!
ReplyDeleteI am disabled and use a scooter or wheel chair, but I can walk as well. I laughed when I saw this meme. You cant take every thing so serious. I dont care what people think about me when I park my chair to walk into a bathroom stall. That is their problem. Life is too short to sweat the small stuff.
ReplyDeleteGo Anonymous! :D
DeleteI don't know how many of you have seen people without any level of disability take parking spaces or scooters when they clearly don't need them, but it's obvious that very few have. And that you don't realize that's who the joke is about - the ones who ARE just lazy and selfish and don't care that someone else may actually need it. It may be hard to believe, but some people DO lie about their disabilities for the wrong reasons.
How do you know 'they clearly don't need them' though? I know some people take parking spaces she needs they don't have a permit but you can't tell looking at someone if they need it or not. That's what this post & most of the comments points out.
DeleteThis joke isn't about them though. This joke hangs completely on the assumption that all people in chairs are paralysed of faking it. All the people in between are paying for it. All the people in between are being judged, shouted at, assulted & accused of lying. This sort of view is constantly being put across in the media and it can end up dangerous for those of us living our lives in the middle ground and that's not funny. It's just not.
Two Words...brain damage.It doesn't show. It doesn't even affect me much any more (it's been over 40 years and I have learned to compensate.) But when my brain shuts down that's all she wrote.
ReplyDelete"I get tired of...having a bus driver tell me I "tricked" him."
ReplyDeleteThe proper reply to that is FU. You have my permission.
I have a disease called Dercum's Syndrome, where most symptoms are invisible. One however, is severe chronic fatigue and I MUST budget my energy or I will be 'one day on, four days off' and people think because I'm fat (it is a metabolic disorder) and for no other reason, I'm milking the Handicapped Parking system.
ReplyDeleteThe pain I suffer at times is so agonizing yet I choose not to take as much meds as I can because I want to be lucid. I am lucid enough however, to hear people say horrid things. Some of these people say X is really handicapped but you aren't as if there is a barometer of suffering, and they can interpret it.
Sometimes when they look to see if I have a handicapped placard, I ask them if they have a medical license and would they like to consult with my medical team but for them most part, I want to be left alone and tell them to pound sand. Painfully.
I have several thoughts about this, if you would allow me to ramble. The first is that it's just a silly picture manufactured to make someone laugh. I honestly don't think it is ill intended. Second thought is that I know you are not the designated spokesperson but what if you lived your life as you like, people be damned, but when you find a situation in which you can educate others, you do so thereby allowing yourself to live as you are and be true to yourself and also help others understand the complexity of the issue. I am able bodied to a degree. I went on a short vacation recently which involved a day hike. The first day people wanted to go shopping and I declined which seemed odd given the approaching Christmas. I simply explained that if I have X amount of steps in me and my priority is a hike then shopping is wasted energy. I choose to use my steps for the hike.
ReplyDeleteI hate to think of you cowering in fear of judgement. Eff those people. Live your life and when it's suitable, educate people or put them in their place if they are being judgmental a-holes. Take care.
A friend of mine had cancer. A grapefruitsize tumor pressing on the lung, just to name one of them. Makes it hard to breathe. She had a handi-capped permit for her car. being disabled, and low on cash, she didn't have the funds for a new car, so she drove a late 80's Chevy Camero. The looks she got when she parked. She could handle some of the comments most of the times, but other times she would break down in tears.
ReplyDeleteThanks for your post.
Some days I can get around okay, others not so much. A few years ago on an icy day I pulled into a handicap spot and parked. I had fallen the day before and was sore and didn't want to risk another fall. Some woman walking by yelled something about "being fat isn't a handicap!" The parking lot was crowded, and when tired, my temper matches my hair, red hot.
ReplyDeleteI yelled back at her "do you think illnesses like MD, MS, Lupus (which is what I have)and Huntington's Chorea are all things you are born with and in a chair for life? NO you ignorant fool. They are slow insidious life stealers, where once you could do anything you wanted you gradually get sicker and sicker, more doctor visits, more tests, medical bills to the point of bankruptcy and then you get the sentence: you have a potentially fatal illness that will continue to steal away your ability to do what you want and then steal away your ability to do what you need and then steal your life, and it doesn't take place overnight. It's a horrible slow progression of pain and frustration and you should get down on your healthy knees and give praise to God that you don't have anything like that. YET. Because 10 years from now, you could very well be the one pulling into a handicap spot and have someone make a nasty comment about your weight which is caused by the medicines you have to take to stay alive and keep what little ability to function you have."
The parking lot was very quite for a few moments, and then people started applauding. I wish I could print that whole thing out and have it put on my car.
Thank you. I'm totally invisibly disabled. I look fine, but i have back problems, chronic migraines, fibromyalgia, PTSD, major depressive disorder, dissociative disorder and psychosis NOS. Between my back problems and fibromyalgia, I'm not very mobile and been labeled lazy. God forbid that i tell people i have mental health issues or they iimmediately start judging. I lie and say i work from home as a freelance becausse otherwise I'm a free loader. People don't understand disability. I cant focus long enough. I forget things quickly. I cant function very well but i get by on the pitiful disability income and i dont look sick... so there you have it. I totally get it. I wish i could get a disability placard for my carif aanything to not lose my car at thr parking lot. Its frustrating and incredibly scary to look for your car for 2 hours because i forgot where i parked it and then ran out of energy looking for it, unable to move on to the next task.
ReplyDeleteI have several chronic conditions, including asthma, that prompted my family doctor to insist I get a handicapped placard. There are days when I feel great and can walk for hours. Then there are days when I can't say 4 or 5 words without having to stop to catch my breath. I often get nasty looks from people if I park in a handicap spot and it's usually older people who just assume that I have nothing wrong with me. Just because I'm not their age or missing a limb doesn't mean I don't have something wrong with me.
ReplyDeleteFeh! I have unilateral deafness and congenital lordosis and kyphoscoliosis with multiple congenitally fused hemivertebrae and I also have vertigo.
ReplyDeleteBecause of my spinal defects and the distortion of my form, I have often been presumed to be retarded (I hold an advanced degree.) I have been accused of "laziness" since I prefer elevators to stairs. I agree completely with everything you say.
Wow you went viral! And rightly so!
ReplyDeleteI wish I'd had this post, and the term "disability binarism" a few months ago when I told someone, who works in a disability-related field that most of the wheelchair-users I know walk sometimes.
He was so confused.
We were having the conversation in the first place after he expressed surprise and confusion that I participate in folk dance, as he has always seen me in professional conferences with a cane. I tried to explain about crowds, balance, gait. I tried to explain about part-time wheelchair use. I probably wouldn't have said "you are suffering from a bad case of disability binarism." But wow I sure would have thought it.
I am an able bodied person and a future OT. I just wanted to thank you you for this post. I appreciate your perspective and that of all the people who have commented here.
ReplyDeleteAbleism is just as offensive as racism, sexism or any other ism.
Don't stop telling people and I won't either.
I have had 2 strokes and, like you, am able to stand and walk, but use a wheelchair for distance, and quality of life. People don't realize sometimes that I cannot just 'pop down to the store' or 'run out for milk'. A trip to the zoo or theme park is not a possibility without my chair. I've been told I'm 'milking' it, lazy, cheap (disabled persons in my city get on the bus for free), scamming the system...etc.
ReplyDeleteI AM disabled, but I also work full time, and strive to live a normal life.
Thank you for posting this ... others need to know.
I think there are people who are just lazy, I have heard of people faking disability (as much as even having a fake cast as well as wheel chair) to get through lines at amusement parks. This is the minority, but it is no new thing to history that minorities often spoil the whole batch. In my personal opinion, I think you shouldn't limit (or even endanger yourself like on the bus) because of what others think. Many people just dont know better than to judge. Yes there are people who will be assholes about it (the minority bit again)… but I think most people would be like me and appreciate the education. Hang in there, I know it must be frustrating, but use that frustration as an opportunity to educate people about your disability, as this article did for me.
ReplyDeleteGreat post. I know of a man in my city who uses a Segway (a 2-wheeled standing scooter) to increase his mobility and says it has made a word of difference (especially being eye-to-eye). I think a lot of people don't realize at first why he is riding the Segway and may stare or make fun.
ReplyDeleteThere's a flip side of the coin. Please don't give me that daggers-drawn, "what kind of insensitive ignoramus are you?" look when I'm trying to figure out the best way to help you board my airplane and I ask, "Can you walk at all? Are you able to stand?"
ReplyDeleteI am a full time wheelchair user. I can't stand without assistance or equipment I know the flight crew has many difficult jobs in flight. When I tell you what I can do safely, please do not question me. Honestly, I am not trying to complicate your job. I do not enjoy asking for help. I do not carry extra equipment for no reason. I have fallen during boarding, & was offered more kindness from passengers than the crew.
DeleteWe live in a culture that makes thinking sort of a crime. So, we have a citizenry of people who can't figure anything out. This includes--duh--why someone in a chair might have some mobility. I beg the author and others not to give in to the general idiocy, and I know it's hard to take the knocks. One wants to protect oneself from hurtful attacks. At the same time we can understand that people who don't get it have had imagination-ectomies. But however one chooses to deal with it, we live in a mean-spirited culture. I wish I knew how we could change that.
ReplyDeleteIf you're in danger in your chair on the bus, then you should sit in one of the seats. I see people do this all the time and the drivers and other passengers say nothing. I don't think it would occur to any normal person to believe that someone in a wheel chair is faking because they stood for a few moments or moved from their chair to a bus seat. When I was a waitress I helped quite a few elderly and disabled customers into booths and never thought "Faker!" Not once.
ReplyDeleteIf you want people to understand your situation, then they are going to have to know what that situation is to begin with.
OMG do I ever understand this. I had surgery 18 months ago, was in the hospital for 34 days, and came out of it with a partial disability. I can no longer do a lot of the things I used to do, but I LOOK perfectly fine. I use one of those electric carts when shopping because I do not have the energy to walk the entire grocery store or department store. I stand up at times to get things off of shelves. Plenty of times people look at me with THAT LOOK, and I have just got where I don't care what they think. I wouldn't be on that cart if I didn't need to be.
ReplyDeleteGreat post! I have arthritis, and I related completely to your comment expending energy in walking, and about working out how far you can walk without having to sit down. I don't think able-bodied people realise just how much energy you have to use when every step is painful.
ReplyDeleteI had a foot injury in 2010 and used a wheelchair before and after the treatment. I was able to pick the chair up and put it in the truck-bed, then hop to the cab. Not enough to stand in front of the class and teach for 5 or 10 hours. I got a little idea of what you are talking about, as well as how difficult it is to get around in a manual chair.
ReplyDeleteI have lipedema and lymphedema which affects my legs. I weigh 400lbs. I can walk but have issues with distance and more so with standing for a long period of time. I am just returning from a trip, when I approached TSA the line was short and I asked if I could unhook the rope to get to the end of the line verses walking the entire length of roped area. I was told no, even after I explained I had a disability I was told no, I was also told I could not go to the other line which was short and had shorter roped area...TSA was training a dog and wanted people to walk past dog, for training not actual screening all passengers. I then said well I can't/won't that far, get me a wheelchair...within moments the training ended and the roped area was shorted so I could easily get to end of line. Once through screening I spoke to supervisor about the fact my request for disability accommodation was not honored...he stated he was on his way to come walk me through but the line opened up, but that yes my request should have prompted me to be taken directly through screening...I told him while using a wheelchair might be easier for me, and for me to get accommodation I'd prefer not to make anyone push 400lbs me in a chair if not completely needed. Because of course if/when I'm being pushed it's "oh she's fat and lazy".
ReplyDeleteI'm one of those people that still care too much about what others think. But I also consider myself pretty lucky. For many years, about 10 or so, I used a cane because of the pain and the times I would be taking a step and just not seem to have a leg all of a sudden. At the same time I'm pretty active, my Harley(my furry child) makes sure of that. I'm in the period of a sort of remission from some of my symptoms and I also strengthened up some and the last couple of years have not used my cane and though I'm still exhausted just being out for a few hours I'll do it. But now these last few months I fear the remissions is on it's way out. I have times where I think picking up my cane might not be such a bad idea.(or those days where I just spend most of the day in bed. But now I spend too much time thinking about what others will think if they see me with my cane again. I can hear their nattering thoughts now. I live in a building where everyone thinks it's their business to talk about people. I know some time in the future my trusty friend will be once again a part of me, I just wish others didn't feel they had to make a big deal out of me doing so. { Quick story. I'm out with some friends and a woman walks up to me and asks me if I really need to use the cane I was using. I looked at her and said no it was a fashion statement. After all it was my purple cane.}
ReplyDeleteThank you for this! I have two adult daughters who've faced many of the same reactions; both are part-time wheelchair users, sometimes walking and sometimes using a walking staff for help. Both have partial disabilities with better days and worse days. Also, my husband is in the "lost parts of his hearing that affect him depending on surrounding noise, volume, etc." category.
ReplyDeleteOur family annually attends a major scifi convention. Elevators in the hotels can require a long wait at peak usage times. What really burned my husband and I last year was when we held the doors to let in a man on a scooter and his helpers (and *not* letting the very mobile other people waiting jump in ahead of him, as a few tried to do). We learned from him on the ride up that he'd been waiting for 45 minutes to get on because people kept darting in ahead of him, many of whom had just walked up to the waiting area.
Bless his heart, he was thanking us profusely. We told him, "Please, we're just sorry someone didn't do this for you sooner; our daughters have had similar issues in the past. We're glad we could help."
And I will say, the "able-ism" comments thrown at my daughters so far have happened when I wasn't around (because if I'd been there, the people would've gotten a large piece of my mind!).
However, both daughters have learned to handle it with either the "tact and opportunity to educate" for nice people and innocently-questioning children... or the "thank you for showing your utter ignorance about disability, but we'll let it be 'our little secret' so you can have the chance to bone up on the subject before your next opportunity to show the world your ignorance" to the jerks. :D
Amen, I'm glad someone said it!
ReplyDeleteIt has never occurred to me that people could be so thick as to not understand that people with certain disabilities can walk some of the time!
ReplyDeleteMy daughter has CP. She has more or less always been able to walk, but her balance was poor and it takes a lot of concentration. At one time, she was better at walking up hills than I was at pushing her, so we always did the hopin/hop out routine - and yes, we did get some funny looks, but never cared much.
My problem is this: since she has got older, carers take her out more than I do - and they hate the wheelchair. She does have complex difficulties, including communication problems, and a dislike of new places. I think she should still use her chair sometimes, but I am the only one that thinks so. Medics and physios work on the "use it or lose it" principal, and I have got quite confused.
Great post! I'm glad this is going viral; it needs to be seen in multiple places, repeatedly.
ReplyDeleteI'm 47.5 years a wheelchair user, due to a rare spinal cord injury when I was 12, and have faced this over and over when I was still on crutches and braces, as someone who could "walk" about 10 feet at a time before I had to rest.
I've had the same experience myself, but I've been on the other side of the situation, as well. I've had to educate myself to invisible disability (a fellow student with congestive heart failure who could only walk 20 feet, then had to sit and rest,had gotten to a prized HP parking space before me, and we had words--before I red-facedly apologized.)
We ALL need to educate ourselves not only about our own limiting conditions, but about others, as well.
Assumptions get us all in trouble, when we should be more respectful about the possible limitations faced in other peoples' lives.
I hope more people reading this string take that message into their hearts and brains.
Traveling recently, I did have to use a wheelchair for the first time, as my connecting flights where too far away for me (50 gates the first trip) and I fatigued much faster than I'd realized I would. I know so many people were staring, I'd never needed assistance before, and I had not understood how it would feel to be dependent in such a visible way. The airline employees were the most rude, one even asking why i was preboarding, even though I'd reserved assistance ahead of time when I'd checked in. On the connecting flight I did not preboard, and the people behind me were complaining loudly, some even pushed past me to get on the plan more quickly.
ReplyDeleteI have RA, PsA, and fibromyalgia. I probably don't look sick. I do know I would never wish any of my challenges on anyone else.
I also know no one understands until they have one of these conditions.
I have fibro and arthritis in my lower back and 2 bulging discs and hand problems. i use a walking staff to get around and get dirty looks. i dont use a handicapped space or have a placard, but still people give me grief for the cane.i go to school 2 nites a week and drive to get there. im tired all the time and in pain but i try to not let it slow me down much, i have 2 sons and they help me but they are kids and dont fully understand why mom is in pain
ReplyDeleteGreat post Cara! Sorry I did not post a comment sooner. Like some other people have said I don't really think this meme was meant to be hurtful. I personally never really liked memes because the humor tends to be too dark or just not my taste but I have seen things on the internet that are way more hurtful than this is. I think people who are activists need to be careful about coming across as nit pickers. Even if I don't agree with everything you said you brought up some excellent points here and started a great conversation! Congrats on going viral! I have heard some of my friends with inviable disabilities say that is some ways having an invisible disability can be harder than having one that is visible. My film "Drama Sighted" was intended to touch on the invisible disability issue since it was based on a real visually impaired person I know who gets yelled at because people don't realize she can't see them and misinterpret her behavior constantly. Even my 2nd film "Only Those Who Limp Allowed" brings up invisible disability at one point because I myself have had some experiences like that where people are shocked that I can stand up after using my mobility aides in public. I have also had awful moments where people do not realize that I have good days and bad days with my CP because my spasticity level is effected by temp or even a stressful day. Cerebral Palsy can be different day by day or even minute by minute. There are moments when I look able bodied when I stand perfectly still. I often use my crutches as a signal to drivers etc that I am disabled. There a people in this world who will look at me walking without my crutches who will wonder if I am retarded or drunk or simply think that I have an entirely different disability. Most people seem to be able to tell I have Cerebral Palsy though and are well intentioned.
ReplyDeleteI hate the comments I see here and there saying that they can tell that a person in a wheelchair is "faking it" if the soles of their shoes are worn. It's particularly stupid when they're talking about someone at Disneyland in a *rental* chair. Don't they think people who are 100% paralyzed would own their own chair, and not have to rent one at the park? How do they think they got there? They'd really force anyone who can painfully walk only short distances to go an entire day slowly limping around a huge theme park in utter agony, because they "can walk," so renting a wheelchair is "faking it"?? I hope they remember that if they ever find themselves in such a state.
ReplyDeleteI just wanted to say, my wife contracted transverse myelitis when she was a child. It left her partially paralyzed, and though she's regained all sensation below the waist, and most of her movement, she's left with a curve in her spine and walking (which she can only do using crutches) is painful over anything but short distances.
ReplyDeleteShe can stand and reach for things, she can drive a car as any fully-able-bodied person, but for work and getting around outside or in a large building (like going to the cinema) she uses her wheelchair.
Disability is not an all-or-nothing thing. It exists on many subtle levels, and people need to understand that just because they can't identify a disability, that doesn't mean there is none.
I just wanted to say, my wife contracted transverse myelitis when she was a child. It left her partially paralyzed, and though she's regained all sensation below the waist, and most of her movement, she's left with a curve in her spine and walking (which she can only do using crutches) is painful over anything but short distances.
ReplyDeleteShe can stand and reach for things, she can drive a car as any fully-able-bodied person, but for work and getting around outside or in a large building (like going to the cinema) she uses her wheelchair.
Disability is not an all-or-nothing thing. It exists on many subtle levels, and people need to understand that just because they can't identify a disability, that doesn't mean there is none.
I can stand on my own with difficulty and walk but am in pain after a couple off steps so use a wheelchair when ever I go out .
ReplyDeleteI would rather do that then suffer pain and yes I do work Full Time so I would take great offence if any one accused me of faking it
I see a lot of this even in the mental illness community. People with more common mental illnesses like anxiety or depression are perceived as having "easier" struggles or are even totally "sanewashed" and assumed to be "pretty much neurotypical" just because they aren't psychotic or dissociating. People who are schizophrenic, BPD, schizoaffective, or psychotic bipolar are babied and assumed to be helpless (read: hopeless) and people with anxiety and depression are ignored to help people who have the "real problems". You just can't win if you're mentally ill, it seems... And that's a shame.
ReplyDeleteWhen I tell people I'm schizoaffective, people are generally shocked, because I present as neurotypical, or at least I don't fit their stereotypes of schizophrenia. I went undiagnosed for years, despite showing clear signs of psychosis, because I didn't fit the stereotype (also, my onset of symptoms was in childhood). Because I pass as "normal", I've suffered quite a deal. People need to learn that disabilities, including mental illnesses, aren't an all-or-nothing case.
Is it naiive to wonder if more people would have a clearer understanding of what you are describing and act in a less ignorant way if there was more authenticity, less fear and an accurate experience of your life? No doubt it is hard and confusing for all involved, much more so if everyone is operating under false pretenses and assumptions. The goal is for more compassion but that opportunity is being preemptively eliminated. I hope you are successful in finding the support you are looking for, your situation sound very difficult.
ReplyDelete"I hate the comments I see here and there saying that they can tell that a person in a wheelchair is "faking it" if the soles of their shoes are worn."
ReplyDeleteAnd now I'm boggling even more at these people! I have shoes that I bought up to 25 years ago. I acquired my disability 9 years ago. Was I supposed to buy all new shoes just in order to be believed?
Hah! My shoes look like hell because my disability is so expensive that I can't afford good new shoes!! Also, btw, I find that I can go Backwards in a wheelchair by pushing with my feet much easier than going forward, which tires me horribly. My shoes get scuffed and worn, yes. WHILE I am in a wheelchair, for my very weak heart and EDS and several other problems too.
ReplyDeleteFirst of all, THANK YOU ALL for everything. This post has gone viral, much to my shock. I've been sitting here refreshing my blog stats for three days. I can't believe how much attention it's getting.
ReplyDeleteSecond of all, I posted this on Reddit, but I think it bears repeating here:
To those who think this meme is funny - why? I'm really curious, why do you think it's funny? The humor in this meme relies on the person standing up from their wheelchair. It relies on that action being surprising to people. If it was just a normal person reaching for a bottle of alcohol, no wheelchair involved, there'd be no punchline. There'd be no "miracle". The "miracle" is the fact that this person STOOD UP. I don't understand why that is a surprising thing. If it wasn't surprising Ito people, if it didn't play on the unexpected, there'd be no joke. Picture the meme with a regular ablebodied looking person reaching for alcohol, with the same text. It wouldn't be funny, because it wouldn't be unexpected.
It shouldn't be surprising and it shouldn't be a joke. It's just a person getting alcohol.
I've known forever that people do not always use their wheelchairs. Polio caused my cousin to feel very weak, so often she would use a wheelchair, while at other times she had crutches. A 103 y/o church member stood to give testimony from his wheelchair. Yet, perhaps this meme refers to the book of Acts 3:6, and think the absurdity of comparing alcohol to the name of Jesus Christ is more humorous, knowing fully well that disabled people have some mobility. http://www.youtube.com/watch?v=RFZJFXvuv0A
DeleteMay I mention a version of this mistake -- that often people who really ought to be using wheelchairs, walkers, disabled parking signs for their cars, and so on, don't use them because they're "not really crippled" or "not really old." Makes me nuts when I see this.
ReplyDeleteTwo examples: my mom stopped shopping a few years ago because poor circulation meant she could stay on her feet for only a few minutes before her legs and her energy gave out. The stores she shopped in most often ALL had those little battery carts to drive around in, but she refused to even consider using them. Eventually she did accept a walker for around the house -- about 3 months before she passed away.
Secondly, an elderly friend of mine has a walker in her care-home room, but never uses it for anything except as a clothes horse, despite the fact that her leukaemia has robbed her of most of her energy and balance. She can barely make it around the corner, thirty feet to the dining room. "No, that's for old people," she said the other day when I offered it to her. She's 93.
It would be interesting to research how many wheelchair and walker users are actually able-bodied. I would be amazed if there were as many as 1% -- one in a thousand sounds possible, but not more.
Noni
To Cara, the author:
ReplyDeleteIn response to your last comment, about why people would think it was funny, I just thought I might explain on behalf of some able-bodied people such as myself. To be clear, I don't find this meme to be funny at all. Not that this excuses the fact that the picture is rude and disrespectful, but truly until this point I had no idea that it was so common for disabled people (particularly those that use wheelchairs) to stand on a regular basis. Obviously this is ignorance on my/our part. You mention in your comment that it shouldn't be surprising that they are standing, but for people who don't know much about the matter, it may be a sheer lack of knowledge. Again, I don't find the meme to be funny, but some of it can be explained by people who simply aren't aware. I was one of them until I read this post and skimmed your blog. I appreciate that you explain everything so clearly and honestly, and simply put: now I know. Thank you for that. I just wanted you to know that not all of us are the "assholes" as described by previous comments on this post - we just didn't know, until now. Thanks for everything and best wishes.
Hi again Cara, I didn't find the meme funny either. I felt it was more of a joke about alcohol. As "Anna" said most able bodied people probably don't know about invisible disability and I doubt many people with visible disabilities know either. I had no idea someone could look able bodied and yet still have a disability until I met people who had disabilities that were not immediately noticeable and often when I do meet someone with an invisible disability I have no idea until they feel they can trust me enough to tell me about their conditions. The first couple of times I met people with invisible disabilities I was shocked just because I didn't know such a thing existed. Again that is what inspired "Drama Sighted" People just don't know. A lot of people who make these memes are just having fun and are not thinking things through. It seems like memes are something people do on a spur of the moment basis.
ReplyDeleteA friend of mine just sent this to me. I'm glad to have found you. I suffered a back injury due to severe sexual abuse when I was a child, but was fully able-bodied for many years. In my thirties, I became disabled by back pain. I can walk, yes, but it hurts a LOT. But people -- particularly at work -- often don't believe that I'm disabled. Soon, I'll be getting a scooter too. I thought this would end the disbelief. I learn from you that I may be wrong. Damn.
ReplyDeleteIronically, my doctors want me to get a scooter so that I can be MORE active. This way, I won't be calculating my energy and pain rates every time I think about going out because I'll have the scooter to help me out.
I'm someone in that grey area. I have EDS type 3 and because of a problamatic surgery on my right ankle when out I now mostly use a chair because I can only walk very short distances with a lot of pain, but yes if a step is too high to get the chair over with me in it I'll get up and walk a few steps, I'll stand to reach things if friends aren't with me. I'll also accept help sometimes even when I on't need it just because the person is being so nice about it and I don't want to put them off asking to help someone who really does need the help.
ReplyDeleteA friend of mine recently said how sad she was to have to finally get a wheelchair and how depressing it was to have to accept that she just couldn't get around anymore. I immediately told her off for feeling that way. It was a major turning point in my life when I got to that point bc it meant that I could do theme parks with my son and I could start to do things that had been off limits bc of the energy drain. I understood how my friend felt but she needed to be able to see the positive and not allow society's narrow minded arrogance to control how we live our lives.
ReplyDeleteI can relate to the feelings you've expressed in this post so well. I have ehlers danlos syndrome, hyper mobility type and over The past few years have had to learn to accept that using a wheelchair will help me. I can still walk and do things for my self, just not very well and can't be on my feet for a long time. Yet when your in a wheelchair and you get out for whatever reason, people have frowned and muttered about me right in front of my face. The amount of disgusting looks I've had just because I've got out to get myself something off a shelf or to walk into a toilet is unbelievable. It's so disheartening. Adapting to life with a wheelchair is hard enough but when people throw horrible judgements your way it makes it even harder! Mind you, regular trips to disney have helped to overcome my wheelchair hatred and slowly allowed me to accept my disability. It's one place where your disability isn't such a big problem as you know you can get around with such ease. Even going to to supermarket is a military operation for me as sadly not everything is as wheelchair friendly as people think! I'm sure you can relate to this very well. Thank you for writing this post, it reminds me that I am not the only one who feels this way. Lots of gentle hugs, Lauren Matthewson x
ReplyDeleteYeah, people make assumptions. It's sad.
ReplyDeleteThose of us with "invisible" disabilities encounter the callous and mean everywhere. I really don't want to explain myself to the casual stranger.
ReplyDeleteI am a board gamer. I tell people "I don't know how many movement points I'm going to have in a day, but walking with the cane uses less of them."
ReplyDeleteFor my friends, that makes sense.
Yes, I can walk without the cane, but there's a cost.
The meme is mean. I would have offered to help if I was there. I suffer from one invisible disability but also from a very visible one. I have horrible aura migraines which make large public settings a real pain I know employees get mad at me but there are times shopping I will get one and have to leave, leaving a cart full of groceries. I cannot drive because of them and I'm only 26. I also suffer from very severe bouts of eczema. people will stare and kids run away. so a lot of times I won't even leave my house. I have lost jobs because of my health and I don't qualify for any aide thanks to still being able to work. I commend you on writting this and sticking up for disabled people of all kinds.
ReplyDeleteWhenever I use my chair( I also have CP ) people don't acknowledge me so when some ask whoever I am with ( what would she like) or ( does she need help) I start referring to myself in 3rd person . ie ( she wants a coke she will ask for help if she needs it) gets weird looks but everyone once awhile I see light-bulbs go off.
ReplyDeleteI think you are empathetic, observant, feisty and cute!
ReplyDeleteI understand completely your point. My mother was temporarily disabled for roughly six years due to an autoimmune condition that caused, amongst other things, crippling arthritis. As she got better she got to the point where she ccould stand with crutches and could shuffle maybe about ten feet on her own, but could absolutely not do any more than a few steps without being breathless and in immense pain. When doing things like shopping she could reach up for things on top shelves, but it was really, really sore. At this stage in her life she was 39, but she told me that she felt like an elderly woman because of her crutches and wheelchair. I think what the able-bodied need to remember is that those needing help actually wish they didn't need a stick or a frame or a chair, but they do, and it is there because they actually need it.
ReplyDeleteCurious the parallels between your "disability" and mine. Take the "high functioning" "low functioning" dichotomy...in mental illness this separates those of us who are absolutely batshit from those of us who are presumed to be in some sort of consensual reality, at least some of the time. NOTICE the word 'separates', because this is how the stereotype functions and how it causes harm. So, what you are writing so well about is the functioning of that short hand of the mind, stereotyping. Stereotyping is so useful, don't you think? Well, if you stereotype, and who doesn't, you really don't even have to think. Eventually, through age, illness, loss of hope, grief, you, I and everyone meet up with something or someone who "disables" YOU. And then, you become the object of stereotyping. How sad, how bad, BUT...if you,I, or they, as so many do, accept prejudice and discrimination as just a part of "human nature", the people who appear to benefit from it will just go on, and on. Great article! Thank you.
ReplyDeleteRelate, relate relate! Lupus, extensive neuropathy, relapsing/remitting crap, chronic pain, lifelong depression. Great post! I wish there were "like" buttons for it and all the comments! :-)
ReplyDeleteTo all those saying things like, "There are some people who fake disabilities," I have to ask: how do you know? You're apparently missing the point. Unless you're an MD, a con artist or know an admitted or convicted con artist, you don't know. You're just acting on the stereotypes this post is talking about. Every time I see someone online say, "I *know* there are people who fake it because I saw someone do that," or "I have a neighbor who gets SSI and gardens," etc., it just shows you're missing the point! I have a sense of humor, but it's the old principle: I can make jokes about my disability. My parents can. My wife can. I'd love it if my siblings, in laws and kids were comfortable enough with it to do so. Otherwise, if you're not in that radius of proximity, making jokes is just mean.
ReplyDeleteI have Marfan syndrome, and between my bones, cardiovascular system, eyes, and now a paralyzed vocal cord from a life saving aortic repair this year, I can identify with most of the anecdotes people have shared. I've had my aortic root replaced in 96, and my aortic arch to abdominal aorta replaced this past March. I had an aortic dissection in 2011. I have three barely detectable cerebral aneurysms that cause frequent TIA's and screw up my motor function.
I chuckled whèn I saw this as I took it to be about other people being ignorant to types of disability. I have a working diagnosis of EDS type 1, but am wsiting for results of genetic tests for EDS type 6b. I am not a regular chair user, but use shopmobility when I need to. Yes, people stare if I get up and walk into the toilet, or changing room or to sit in a proper chair at a cafe. if I catch their eye I will usually say sonething like "It's a miracle!" I have never been confronted or accused of fakery despite being a young person. My Mum thinks I should "act more disabled" when I use disabled parking bays or shopmobility to legitimise my invisible disabilities, but I know what pain I'm in, I know how exhausted I am, I know how I don't hear as well as others, I don't need to prove myself. For that reason, when I saw this on a community on FB I commented that not all chair users are paralysed, and it can be vety amusing to f**k with people's assumptions this way. I recived no abuse or vitriol in response to my comment. I even got a few likes. Whilst this image *may* have been born out of ignorance, I found it could be turned around to poke fun at those who do have such a black and white view of things.
ReplyDeleteIncidentally, my 6 year old asked me the other day why not all disabled people use wheelchairs when the symbol shows someone in a wheelchair. Cue long discussion of different types of disability using family members and friends as examples. Sometimes I think a lot of prejudiced people out there just want to ask the same questions, but are embarrassed and fall back on their ignorance. Frankly I'd prefer to be asked questions - respectfully, mind you!
I sometimes need to use a stick as I have osteoarthritis in some of my foot joints; I tend to use it more when I'll be walking longer distances, particularly on hard surfaces in town. When I first started using it, before I had a fusion operation, I found that it acted as a signal for people to give me more help or more room/time to move. The same with my crutches, after my operation - they acted as a signal for consideration. Maybe I've just been lucky to meet a considerate and relatively educated population but Glasgow and London rush hours are as fraught as anywhere. I've also been lucky enough to have had nothing but consideration about my partial hearing loss. Or maybe I just don't notice or automatically ignore the ignorant.
ReplyDeleteI am an 80 yr old man with a severely broken ankle and am inthe condition described here so accurately. I think I'm healing but won't know..Anybody, anywhere, in a wheel chair, on crutches, or walking aids of any kind should be observed but left alone if they so desire. What bothers me is when a person walks up behind me, grabs the chair and 'takes charge' of propelling me.
ReplyDeleteOffer, and aid if asked. Otherwise, mind your own business
Thank you for posting this. People look at me like I'm an idiot when I ask someone in a chair if they can walk. People don't realize that absolutely no aspect of the human condition, none, is black and white.
ReplyDeleteHey Cara, If you want to see a really hurtful disability meme look at this! http://dyspraxicpanda.tumblr.com/post/71968004271/the-most-annoying-thing-not-all-disabilities-are
ReplyDeleteIt's about the topic you discussed in this post so that is why I am sharing it here. Told you there was much more hurtful stuff out there unfortunately :(
Thank you for posting this! I myself suffer from Fibromyalgia, which can mean a lot of different things on different days. Some days I can hardly walk. My disability is invisible, but the judgemental stares I get certainly aren't.
ReplyDeleteI don't want to have to explain to people why I'm not vacating a seat at the front of the bus or near the doors on the train, but sometimes I have to.
I also shouldn't have to be yelled at by an elderly man with a cane (and no vehicle in sight) demanding to know "where my wheelchair is" because I'm parked in a handicap space. Nor should I have to be subjected to the neighbourhood asshole leaving me passive-aggressive notes threatening to have me towed when I park in a "residents only" zone in my city, where it's legal to park with a handicap placard for up to 3 hours.
Such is life, I guess. But the hope is that the more we talk about it, the more people will become sensitive to the fact that - as you said - we are people who can't be categorized as wholly this or wholly that, but rather fall somewhere on a disability spectrum. We may even shift on that spectrum from day to day, or even hour to hour.
You are speaking so much truth that I am cheering you on from home in my wheelchair! Thank you so much for putting this information out for people to read! If everybody understood the gradient of disability, we all could live with less stress in our lives! Thanks again!
ReplyDeleteThree things: 1.) Nothing offends my daughter. She has a totally irreverent sense of humor. This photo offended her. Her best friend has a heart condition. Although the friend could stand up to get something, she cannot walk long distances and would need a wheelchair. 2.) I myself have long-term injuries from a car accident, and on a bad day, when I go grocery shopping I need a motor cart. On a good day, I can get by with a cane. Any time I use the motor cart, I make sure my cane is visible in the basket, so that people are less likely to judge me and jump to the conclusion that I'm only riding in the cart because I'm fat and lazy. I know, I can't help what they think, but I still want to minimize the possibility. 3.) My husband is a bus driver. I hope he knows better, especially since he is now married to me, than to assume someone who *might* be able to stand or walk short distances is "tricking him" by using a scooter.
ReplyDeleteHere here, well said!! :) x
ReplyDeleteI'm in the grey area with you, and share all of the same views as you do! Memes like that are no joke for those that live this life, and mockery of our situation is cruel and unthoughtful. People must realise you don't have to be permanently disabled to use a wheelchair? Some peoples attitudes astound me, and they are making many of us stay glued to our chairs in public when we don't have to just to avoid moments like this. Power to the cripples!!! Xx Hayley
ReplyDeletewww.hayleyeszti.blogspot.com
yep binarism. you might want to check out prototypicality or markedness theory. prototypicality is the study of what makes something typical. for example, when americans are asked to name a bird they usually say robin (not a penguin or ostrich). prototypicality has only been around since the early 1970s as an academic idea - that things are on a continuum/spectrum. Before that markedness theory dominated which divided things as either marked or unmarked and didn't leave a grey area or a continuum/spectrum. kind of important!
ReplyDeleteI think this meme is offensive and not funny because it implies the person in the picture is enough of an alcoholic to "miraculously" stand up. It relies on the assumption that standing up from a wheelchair is something so unexpected / impossible that it amplifies that person's assumed motivation: need for booze. It is making fun of the person in question by falsely assuming offensive things about them. It is not offensive to assume that someone is paralyzed (ignorant or prejudiced, maybe), but it is offensive to spread a baseless joke about them that depicts them as an alcoholic just because they reached for a bottle instead of asking for help. And even if this were an alcoholic, it would be incredibly rude to laugh at their condition. People who think this is no big deal, maybe haven't fully considered the implications and should think again. Just because it didn't immediately offend you doesn't necessarily mean it's benign.
ReplyDeleteI contracted CIDP as a kid and was paralyzed from the waist down twice in a spring and summer, putting me in a wheelchair both times. AS I was recovering, I started to be able to walk, but by that I mean get from the chair to the couch without falling. I'm sure people saw me get up from the chair to get into the car or move around places/obstacles the chair didn't fit. I'm alao sure some of them wondered why I had the chair if I could stand and walk, but when you've tripped on the millimeters high divider between kitchen floor and carpet, walking isn't fun.
ReplyDeleteCara, thank you oh so sweetly for giving something I have been bothered by for years and years a shorthand name. It is a good one, too. I understand if you have not invented the phrase "disability binarism", but this writing is the first time I have read it. It suits a lot of ignorant attitudes and behaviours to a T.
ReplyDeleteDiabetes and thrombiosis are completely invisible to the naked eye. Without a lengthy explanation, people are often incapable of understanding why an ambulance driver might place me in a wheelchair or otherwise render me able to be moved without mobility on my part. Given that low enough blood sugar can make even standing upright for seconds at a time impossible, and that thrombiosis can make walking excruciating, I never feel I owe anyone an explanation of why I am being given assistance. But that feeling is apparently never mutual.
Autistic adults also suffer terribly from binarism. In fact, curebies thrive on binarism because it can be used to negate any and all objections to their agenda. If we are not screaming and punching ourselves in the head when we see steaming water for example, then by golly we must be living charmed lives and our objections to bleach enemas are from a privileged position! It is completely insane, what people can get away with just by using disability binarism in the right way.
This is an example of two things. Why we need network neutrality, and why we need a user's bill of rights that specifies, among other things, more control over how our image is used. Imagine an Internet where the assholes who distribute images like these (including George Takei) are allowed to keep doing so whilst objections such as yours are slow-laned or even made unreachable. With a bill of rights that states we have a say in how our image is used online, the individual in this image could tell people who post it and say "haha look at the funny cripple" things like "thank you, that will be X thousands of dollars".
I truly hope whomever made this image is confronted with a similar reality to that which its subject lives in. Maybe not permanently, but nothing promotes remorse like parallel experience.
Thank you! There are many of us out there!
ReplyDeleteThanks for the inspiration on my blog posting today: http://blog.berkholtz.net/2014/08/disability-binarism
ReplyDeleteI have had one of the "invisible" disabilities for over 25 years (at least diagnosed) of BiPolar. Most would never know about how there are days where getting out of bed is a victory. I also was in a car accident about 10 years ago that has left me with chronic back pain. I walk a lot, but most would not understand that there are good days and bad days. Some days I can run around a store perfectly fine and others I am gripping onto the shopping cart just to put one foot in front of the other. My back will never get better and my brain will always work a bit different. It is just how it is. But it is idiots that see (what they think is) a "perfectly healthy" woman and never understand that it is a day of small victories. That day I got up out of bed (even though I am so far into a depressive cycle) and went to the store (even though I want to cry because my back hurts so bad), dealt with the public (even though my anxiety levels are through the roof), and all that. Life is about good days and bad days...just with "grey area" disabilities it is even more so. It is difficult to see how that meme is humourous.
ReplyDeleteI am a wheelchair user , I survived 2 severe strokes, 3 heart attacks .I can stand and walk with a walker for up to 40 feet before my heart acts up. So please do not judge someone with ot knowing the whole story
ReplyDeleteI am a wheelchair user , I survived 2 severe strokes, 3 heart attacks .I can stand and walk with a walker for up to 40 feet before my heart acts up. So please do not judge someone with ot knowing the whole story
ReplyDeleteI am a 32 year old man who can walk good I use a power wheelchair. I work as Security officer when we had to start walking a lot my boss told me I could use a power wheelchair so I would not to be walking around for 12 hours a day and when I got off work that day I want to buy a power wheelchair I was just wanted to use it at work. It was nice to sit my lazy ass down into the power wheelchair and get paid for working and not doing any of the walking on the job.after one month in this power wheelchair when at work I started using full-time. I can walk but I am a lazy fat man using a power wheelchair.I do't give a fuck what anyone is saying about me I work full-time job and the other 4 man who works with my or using a power wheelchair to the have become lazy fat man to
ReplyDeleteThis kind of attitude really bothers me. I have EDS type 2. My physician is a good man and has watched me go over the last ten years from someone active and able to walk to being so crippled by pain and joint damage that I can barely walk unassisted...and I only do that because my house cannot be renovated without a lot of money we don't have and because in Florida the ADA is a joke. I would never go anywhere if I stayed in my wheelchair.
ReplyDeleteI get called on it in spades because I am also fat. They don't know or care how I struggled to avoid needing my driving placard, how I used crutches until I tore out my shoulders, how I insisted on a manual wheelchair until I couldn't even move that. They make rude remarks about the ramp stairs my husband made so I could still get in and out of the pick up (it's a rural area and the road is impassable without one). I am therefore extremely grateful to see I am not alone. I have even had other disabled people tell me I am not broken enough or that I'm lazy, as though for some reason my experiences don't count.
Autistic people, such as myself, experience it quite a bit and to different extents. Examples: Either you're nonverbal or you're neurotypical. Either you're the archetypal aspie or totally typical. I also have inattentive ADHD. People who are unfamiliar with this disability only think of the generic hyperactive schoolboys and not someone like me. I am also gifted (verbal) and people do not understand the combination of giftedness and learning disability. I really hate binarism...
ReplyDeleteThank you for explaining what the joke was. I didn't understand it. I completely missed the point! It seems reasonable to me that someone in a wheelchair should sometimes be able to stand up to reach the top shelf. If I had been there I would've offered to help and not been offended if my offer was declined.
ReplyDeleteI love this article! I too have experienced the shock and awe of people when I started using a chair to get around. I am "obese" by medical classifications and up till one year ago I was a very good walker, then I slipped and fell on a mossy patio and fell again in a badly shoveled snowbank, both of which left me unable to walk long distances without a random out of the blue lockup or give out of the injured knee and a fall on the ground. I tried a walker but it wasn't helping much the pain and surprise knee issues kept on happening. When I got into a wheelchair it was like my life began again, I was able to do things, keep up with the family etc. It's amazing how many people just assume though that I am in the chair because I'm fat, and because I'm lazy. I have a torn meniscus and I personally believe that thanks to the delayed diagnosis my arthritis went from meh to severe in the damaged knee. I can't have surgery done on the knee because of the arthritis,and because of my size. So....I am going to do my physiotherapy but I love the chair (I can't qualify for a scooter) and I like that I have more energy and more freedom using that chair than I did struggling to walk and putting up with insults from those around me. Now they insult me with their eyes, but their mouths are bricked up I guess being in a chair means they don't feel as entitled to pick on me anymore. Thank you for writing this article it was a MUCH NEEDED thing.
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