I have what you might call an invisible disability. I hurt all the time. All the fucking time. The last time I wasn’t in agony was 2003. Some days getting out of bed is beyond me, but every day is a challenge. I work through pain, and smile through pain, and watch movies through an enormous amount of pain. But I don’t use a wheelchair. I park in the disabled-accessible spot, and get out of my little red convertible in high heels and lip gloss and I don’t fit the picture of what disabled should apparently look like. If looks could kill, the dirty looks that come my way would be enough to disable me if I wasn’t already. And I’m not alone:
This nasty note may have come from a good place, but it was left on the van parked rightfully in a disabled spot. The van’s driver had her daughter with her, who suffers from hypophosphatasia, a rare genetic condition that causes bones to break – every step she takes could potentially result in a fracture.
This one was left by another anonymous coward on the vehicle of a young woman with postural orthostatic tachycardia syndrome, which affects every organ in her body, causing her blood pressure to drop suddenly or her heart rate to accelerate, leaving her weak, or faint. I’m sure she’d gladly trade you her parking space for your health.
This awesome note-writer is actually right, for once. The BMW did belong to a young male professional – who happens to be paraplegic. It’s crazy but true: we don’t all drive vans. Sometimes us disabled folks drive cars that look surprisingly like yours! Unfortunately, they do not magically cure us of our illnesses, just like they seem not to cure your stupidity.
Anyway, I could go on and on, but you get the point. As if a lifetime of disability isn’t enough, you also get the fun judgement! And to get to my point (and I do have one): you also get zero representation at the movies.
Well, okay, not zero. But most times that disabilities are depicted in the movies, it goes like this: he was a nice normal guy, ironically loved using his legs until that tragic accident where he no longer could, now he’s super mad and who can blame him, but then he overcomes it, wow, what nobility. As good as both The Butterfly and the Diving Bell and The Intouchables are, the point of the movie is the disability. I’m looking for movies where the disability is incidental, and those are much harder to come by.
Notting Hill: One of Hug
h Grant’s friends just happens to be in a wheel chair. She’s not a tragic character, she’s just one of the guys, none of whom are afraid to poke fun at her condition. The scene where they’re all rushing to reunite Hugh with Julia Roberts and she (played by Gina McKee, who is also terrific in Atonement and In The Loop) wants to sit it out because she’ll slow them down but her husband insists, and quickly packs both her and her chair into the car so she can still be one of the gang – that’s what I’m talking about.
Finding Nemo: Little Nemo has a “lucky fin”; it’s underdeveloped after an accident and it 
means he’s not a strong swimmer. But he’s brave and adventurous anyway, and refuses to be left behind. He can do anything his friends can do, and he’ll prove it til he’s in peril. In fact, much of this cast is a testament to accepting those who are differently abled: Nemo’s dad has anxiety, Dory has memory loss, and I believe there was even a little obsessive-compulsive cleaner fish in the tank. And yet they’re all just getting on with their lives the best way they can.
Four Weddings and a F
uneral: In this one, Hugh Grant has a brother who is deaf. Grant had to learn sign language for his scenes with David Bower, who is also deaf in real life. Again, noth
ing is made of his disability, it’s just a fact. Brothers can be deaf. This brother in particular was deaf, and also a lady killer, and also quite sensitive to his brother’s true feelings.
Saved!: Macauley Culkin plays a paralyzed high school student. He’s a normal guy who just happens to use a wheel chair – he’s sarcastic, horny, and tired of his goody-two-shoes sister. He’s also learning to enjoy a measure of independence.
Nothing against My Left Foot, but it is nice, and I think, important to show people with disabilities who aren’t particularly courageous or noble, but who are simply living among us, touching butts and stealing the last brownie just like any other jerk. This list is woefully short – certainly I’ve missed many. If your memory is better than mine (and believe me, it is), let me know in the comments!
ASSHOLES WATCHING MOVIES 
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(posted on the car of a woman with a prosthetic leg)
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She has a prosthetic leg and a stalker. Fantastic. I’d love to leave a note in response: “You admit to filming me on multiple occasions without my knowledge. Please go to the police. I’m sure they’ll be very interested in hearing that.”
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Good point. Scary point.
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(left for a woman with POTS)
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(on the car of an amputee)
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Jay, I feel this so much. I have Asperger’s Syndrome (which is a mild form of autism) and I’m extremely annoyed by the non-representation of autism in movies, particularly milder forms like mine. Not all of us are like Sean Penn in I Am Sam or that nails-on-a-chalkboard little boy from Extremely Loud and Incredibly Close.
Even worse, reading those notes made me FURIOUS. I can’t believe that many people are so bloody ignorant.
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That’s right. Here again, the movies that do exist are about the disease or the disorder instead of beign about the person with it. Hollywood obviously prefers the extreme cases, but there are so many people who are living with their disabilities quietly – having jobs, families, etc. That’s the real world.
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How sad that someone would leave notes like that, not to mention hurtful. Your post reminds us not to make snap judgments. What we see on the surface could be very different from what we don’t see on the inside.
In my first book, one of the characters has an artificial leg. It doesn’t factor into the story, but it was just something they came to me, and I went with it. Some readers asked me why I did that. I said, why not? We all come in different shapes and sizes, and sometimes with different parts (excluding the obvious gender ones!). No reason fiction shouldn’t reflect that.
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You are a remarkable lady.
Coming across random stuff like that really helps to normalize the experience.
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I suppose it does. And thank you for the kind words. I’m going to tell my kids you said that. They’ll roll their eyes and call me a ‘casual.’ It’s their go-to response. 😉
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A casual, you say? Oh man. I’m so old and out of touch I don’t even know what that is. I trust that it’s some hip insult and am afraid I might be one and not even know it!
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It originally had to do with gaming. Here’s the Urban Dictionary definition: “A pejorative term used by the ‘gaming elite’ to describe any person(s) who doesn’t measure up the standards these sycophants have set for their definition of what a true gamer is.” My son’s have extrapolated its use to me.
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Ah yes, gaming, my other other blindspot. At least I can understand how casual would be pejorative. I do have a brother-in-law who puts in SERIOUS hours. Probably two of them, actually.
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Since so many non-handicapped people do use handicapped spaces, are others completely wrong in assuming they’d have a disability placard if they were handicapped? Or are the above incidents all about being doubted despite having a placard? Genuinely appreciated the post, btw.
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Yes, sadly all of those people did have their placards in place.
Sadder still, that still doesn’t alleviate doubt because I have heard of people in Toronto using their dead parents’ placards, or faking illnesses, just to get passes that actually get you street parking, which is rare.
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I hate things like that as well as I too have a disability in Asperger’s Syndrome as well. Yet, my late sister couldn’t walk as I sometimes drove my car with the handicapped sticker just so me and my mom could get some things. Yet, there’s people who do look at us as if we’re doing something wrong as I was like “fuck them”. They don’t understand a damn thing anyways.
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That’s right. They aren’t worth it.
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Hey Jay,
Bummer about your chronic pain and I’m sorry people can be such assholes (notice I didn’t capitalize assholes) around people with legitimate problems – as if they didn’t have enough problems. Disabled Parking Harassment is such a cowardly form of vigilanteism…grow a set and shoot somebody not using their turn signals or at least slam on your brakes when a cop is tailgating you once in a while. Sheesh.
I have a friend with stage 4 breast cancer…tumors in her bones – pathological hip fractures etc. I keep bugging her to activate her disabled permit, her doctor filled it in for her last year. These notes are the reason she doesn’t do it, she walks a little slow, really slow on stairs or around uneven surfaces, but if you’re not paying attention you’d think she looks fine.
She says she’ll use a permit when she needs a cane or walker…which maybe sooner than expected with all the traipsing around she endures unnecessarily.
RR
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First, I love your sense of vigilanteism. You’ve got an answer for everything!
Second, I’m sorry to hear about your friend. It sounds very painful and taxing and I’d hate to think her being so brave is taking a further toll on her body at a time when she needs all her strength.
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I’m glad you posted this. I know how hard it was for you to apply for the permit and you don’t deserve to be given any grief for it. It happens all too often though; we have encountered this sort of thing in both our cars when using the permit. I hope this helps change that.
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Wow, how sad and shocking. People are idiots. It’s no one’s business why someone has a placard and to actually leave a nasty note? I’m just so totally appalled.
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Yeah, I hope it’s all coming from a good place but people really do just think wheelchair equals disabled, and that’s about it. Most of the qualifying conditions for a placard ARE invisible. Of course, invisible to people in a parking lot. If you know me, then you’ve seen me immobile, you’ve seen me crippled in pain, you’ve seen me backing out of commitments because I can’t get out of bed, you’ve probably even seen my scars, my blood, my constant surgeries and pills and doctor appointments.
To anyone who says I don’t look disabled, I say: thank you. And also: You don’t look like my doctor.
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Jay, I am sorry you are in pain. I have to say you opened my eyes. I would never be a note leaver but I have done a double take at some people leaving the handicapped spot not ‘looking’ handicapped. I didn’t know that you could get a pass for chronic pain but I am glad you can. I won’t be so quick to judge again. BTW your choices in movies were brilliant! Please don’t hate me 😦
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Hate you? Not a chance.
It’s misleading because as someone mentioned, we do label these spots and even our placards with the symbol of a wheelchair.
Even the disabled washrooms are made for wheelchairs, but someone like me might need to use them too – I wear a lot of bandages to deal with my bleeding and infection, and I need the extra space to change them that a normal stall doesn’t afford. I had a friend with Crohn’s, and she had an ileostomy (I hope I’m spelling that right) which means she had a surgery to open up her belly and attach a tube and bag to her intestines. They emptied into a pouch she wore strapped to her stomach. Imagine being a young woman with that burden! When that pouch was full, she needed to get to a washroom STAT in order to empty it. She too might need a special parking space or the big stall, but as long as she’s wearing a shirt, you couldn’t tell just by looking at her.
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Oh I understand this all too well. I had a client who was told off when she parked in the handicapped parking spot(Yup she had the sign which you must get from a Dr). She told the woman how hurtful she was because she has a heart condition. After, the woman apologized but it still left my client in tears. I understand pain all too well. I have Ehlers-Danlos Syndrome type 3. I am hypermobile. It is genetic and there is nothing one can do. When I was young, I could really cram myself into a little box, I could do all sorts of tricks but I also would constantly injure myself. It’s hard to break a bone because I am so bendy but I dislocate easily and suffer severe sprains. Over the years, scar tissue develops and the pain increases. It is in every joint, even my jaw. Dr’s do not know enough about it and I have been asked if my family was in the circus, if i am depressed etc… I do not swell and look perfectly fine but the pain is like an abscess tooth in every joint. My Doctor doesn’t believe that I have this much pain or he is just hesitant in giving me more than 40 Tylenol 3 per month. Sad but I can’t function without the pain meds. I tried IBprofen but my stomach suffered and I started to bleed. Since I have a job which is a sit down job, I have been able to work but I have missed work because sometimes I can’t even hold a pen. If I was trying to work in any other job, I would not be able to but I don’t even get the recognition from the Dr’s since there is no blood test to determine this problem. I feel for you and am angered at these notes because it is purely judgemental. I can’t think of any films except the ones you listed here. Take care and I am one who does understand.
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I’m sorry you have to go through that. I have an orphan disease too – a disease little-known to doctors, which means there aren’t a lot of treatments or options, and the ones that don’t know it will treat you like a drug-seeker. It’s not really fair, and sometimes I catch myself wishing I could just pass it to them, just for a minute, and see how they like it.
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And I’m lucky too – I’m technically self-employed, which is good because there are probably not enough sick days on the planet to cover me when I’m going through a particularly tough time. But there’s also this: I don’t get sick days, period. If I don’t (or can’t) work, I don’t get paid. I’m also not eligible for short or long term disability, so when I’m off for surgery, I’m in the hole. And I don’t have medical benefits, so they’re out of pocket as well. But I’m not a drain on the system, I’m still paying my bills and making the best of it!
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I commend you on your strength and determination! At least in Canada we have health care so I couldn’t imagine having to pay for everything that should actually be taken care of by the government. I am a strong believer in health care.
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Dammit, I was feeling good about humanity for a while there… People are just the worst sometimes.
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Wow Jay! I loved this post and I’m sorry you are in constant pain. I kept shaking my head while reading because many people really ignore what to be sick/disable/or in pain is.
I also admire the people who have the guts to leave notes. All these were left to the wrong people and that made me very sad. But when people who don’t deserve to use those spots and actually use them, that makes me feel even worse. It’s nice that people care (leaving notes). It’s really bad that they actually assume that if you don’t miss a leg or an arm you don’t count as disabled. I hope you understand what I mean, it was hard to put all this in one paragraph 🙂
If I were the one getting the note, I think I would cry for weeks. A disease/disability is painful enough and I don’t need an extra idiot to make it worse. But sometimes that extra idiot is trying to protect the disable by leaving notes to the ones who shouldn’t use the spots.
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I do know exactly what you mean. I wrote in a comment above that I’m aware of people who have placards illegally, and I wish it WAS something that was policed and enforced. Obviously the general public is in no condition to judge who is disabled, but we do need parking enforcement at the very least to be checking up on people. Actually, once I was sitting in my car at Chapters trying to summon the energy to go in when someone did check up on my placard. He apologized, but I wasn’t offended in the least – he’s doing his job, and I’m glad for it.
Thanks for sharing!
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That’s true. More control is needed. Sometimes I feel like people don’t understand how serious thing are until those things happen to them.
So sad!
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Dear Jay, so sorry about your chronic pain, that is such an awful condition :(.
This post is really important, in more ways than one. I know you won’t mind if I spread the word. The placards, incidentally, don’t help. They show a person in a wheelchair, they induce people to look out for those. I have noticed that in working in a shop as well: some people are “programmed” to respond adequately to the obviously blind, to people in a wheelchair, but they’re not sure what to do or say when people have more or less obvious disabilities (Parkinson’s and Multiple Sclerosis in slightly less obvious forms, not to mention all the mental health variations). As you said, the intention was probably good, but how terribly wrong and hurtful they were.
As true as it is that we should overcome our pre-judgments ourselves, I think some generalised education and visual “refurbishment” of the disabled symbol might actually help a lot.
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Yes, you’re absolutely right. That symbol is exclusionary and misleading.
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Reblogged this on Billy in Blunderland and commented:
I believe this post is extremely important… for many reasons. Disability in film shown incidentally rather than as a focus can help drmatically to change our view of what disability actually is. I also believe that it is time the disabled sign is changed: people are programmed to look for the physical props in order to judge, and whereas we should all try hard individually to overcome our visual programming, I do think that changing that pesky wheelchair would be a great start.
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Thanks for sharing, and for your great insights!
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Jay, I hope you don’t mind, I wrote a post about this post today and linked it to this one 🙂
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This was a really interesting read, thank you for sharing this with us. I could relate a lot to it. People can be so stupid sometimes
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HI Jay… i feel for ya, i really do!! People should take a moment and think and they dont… i wish i could find the one some one left on my Moms car. it was so nasty and hurtful!! its too bad there a few people who ruin it for everyone.. but its not for us to judge, sometimes i think those People that leave the notes are jealous they arent parking so close, or they think everyone is taking advantage of the system, when in fact there really is only a few.
and let me close by saying…people really do suck!!!!!
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Aw, your poor mum. I think if people are really concerned, they could call the parking security or by-law enforcement. Those are the people who are fit to judge whether a car is parked there illegally. Notes like that can be so heart-breaking to the people who are receiving them erroneously.
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Take care Jay😘🍻
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It’s rare that we know a stranger’s situation which is why I never make these judgments. Or rather I try not to. There’s a knee-jerk reaction I have when I see someone whose handicap isn’t obvious to me parking in a handicapped space. I have to stop and remind myself that just because I can’t see it that person could have a very real need for that space. I have to stop and remember my friend whose asthma wasn’t something you could see but which prevented her from walking long distances.
And I have to remember that I should never criticize someone until I’ve walked a mile in their shoes. That way when I criticize them I’m a mile away and I’ve got their shoes!
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I’d like to see you try it in a pair of mine!
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It wouldn’t be my first time in heels.
http://postimg.org/image/82i109qfr/
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Too awesome for words.
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I wish I could say “I can’t believe people leave notes like this” but I can. I fractured my ankle earlier in the year and was in a walking boot. I hobbled into work and someone remark to me that they “should’ve given me a sticker, lord knows they see people who are clearly not handicapped using them.” I responded with “Well, I need to walk on my foot, or else it won’t get better and they could have an invisible illness.” It was like this thought had never occurred to this person. That autoimmune diseases didn’t exist. I wish more people would consider that before leaving a douchey note on someone’s car.
Save that for the asshole that takes up three parking spots on purpose with his Porsche. lol
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Right?
I always hope it comes from a good place, but I think it’s sad that our instinct is to police and shame each other rather than to show empathy.
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Jay, I am so sorry to hear your health issue, it must be unpleasant. There are people who think they are superior than others so easily leaving such notes without any other considerations. I can’t believe they judge people just only by specific appearances, shallow minds 😦
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Thanks, Indah. I get by. But I do hope we can inject just a tiny bit more empathy into our lives.
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Too many sticky beaks in this world. 😦 One of my favourite books, (film version Denzel Washington/Angelina Jolie) is The Bone Collector, about a quadriplegic forensic scientist Lincoln Rhymes, who solves murders from his apartment, and although his disability is gone into, it’s also how he solves the crimes, and how he regains a good life along the way. There is a whole series of Lincoln Rhyme novels by Jeffrey Deaver, but unfortunately no more movies planned. I say unfortunately but actually that’s a good thing, the film couldn’t do justice to the book in this case. But if you like reading…. 🙂
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That title is super familiar but I couldn’t have placed the movie. And I do read, copiously – I read more books than I watch movies, if you can believe that!
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I am so sorry to hear that you suffer a chronic condition that causes you pain. Good for you for bringing this issue to a post, you are helping to educate people. I can’t help but think that most of the people who leave notes truly mean well, they are trying to help, but this really highlights that we shouldn’t be so quick to judge others. Each person carries a story with them, and this is true in every respect. I understand where you are coming from because I am hard of hearing. I have been since I was a child, so most people have no idea because I have a lot of coping mechanisms, but it does make things harder. I certainly don’t need special parking for my condition, but the point is I look and sound completely normal, but I do have this struggle and it can be challenging. And I just get on with it, too. Take care, Jay.
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well I can heartily recommend this series, excellent writing, great characters and clever plots. TBH I usually prefer historical fiction, but these books are a cut above the norm.
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I’ve been known to leap to conclusions about some drivers of cars in handicapped spots, Jay, though I have not reached the note-writing stage. Thanks for steering me straighter, reminding me about the more silent disabilities.
Regarding movies and reality, did you catch How Sweet It Is, a little 2013 movie about an old singing group starring Paul Sorvino? One of his guys suffered from diabetes, had constant woes with his feet, and they had no trouble ribbing him about it while trying to keep his sugars down, and wheeling him around in his wheelchair, just another part of the storyline.
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I didn’t catch that one, no, and I’m glad to know there’s a character with diabetes other than Julia Roberts in Steel Magnolias.
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Yes, me, too, Jay, because I fight through Type II.
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What really thought-provoking post that raises many valid points.
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That is shocking that someone left a note like that for you. You have a badge and a valid reason for it, it should no one else’s business.
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This post is so spot on. Recently I witnessed a pretty shitty exchange between some dickhead and a disabled person who was sitting in one of the disabled seats on the train – this rude man said to the lady in the seat that she shouldn’t be sitting there because she clearly isn’t disabled and should stand up for someone else, but she rebutted that she had pretty severe arthritis and was not able to stand for long periods of time, even though she might look like a ‘normal person’. It just goes to show that disabilities can be invisible and are no less significant than others. I would tend to agree that the symbol for disability kind of primes people to think a certain way, but I’m hoping that simple open-mindedness and empathy can fix that issue. The people writing the above notes should be ashamed of themselves!
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Jay, how rude of people! 😦 This makes me sad, and I am so happy you listed some people with disabilities.
Here are 2 more: “The Other Sister” Juliette Lewis display well in her role.
“I Am Sam” with Sean Penn doing a heart wrenching role.
Hope those who are mean will face karma for what they do or how they act. 🙂
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Thanks, Robin!
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Very poignant and interesting post Jay, loved it. Also love the image of you in your lip gloss and heels getting out your convertible! 🙂
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Ha, thanks. The worse I feel, the better I look. It’s my little fuck you to the universe. 😉
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And why the fuck not! I LOVE that image!
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what a great and sad post Jay. We all tend to be too judgmental and sometimes lose sight of the important things in life.
We wish people we know, health, happiness and long life, but we forget about that with strangers. We tend to assume the worst and begin to make assumptions that we have no idea about.
The old saying about what happens when you assume is really true in these kinds of situations; you make and ass of of u and me.
I wonder how those people would feel knowing the truth after leaving those notes, would they still feel like they are being righteous or would they feel like a bunch of judgmental assholes that while trying to do the right thing, had it all explode in their faces.
Next time, they should think before acting.
Hope you eventually find out what is causing ur pain and find a way to remedy the situation.
Health, happiness and long life my friend!
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Thanks Rob. It’s too easy to forget that people are concealing all kinds of things, and I only hope that I’m concealing mine!
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This is one of the best posts I’ve read since I joined WordPress last July. It’s just too bad it had to be written. I’m sorry you’re in daily pain Jay. Like Emma though I love the image of you in a killer dress and heels! Before my illnesses forced me to leave my job I used to do the same thing. The worse I felt, the more I dressed up for work. The two things that qualify me for a placard are fibromyalgia and neuropathy. I think if I wasn’t forced to walk with a cane, I’d probably be dealing with the same ignorance.
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Great post. Important point and something I hadn’t thought about in films before. I’ll be looking out for it more now.
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I too am disabled..but can walk.now.. I have had 4 back surgeries from 2000 – 2003 and have titanium cages in my lower back with more to come..I was partially paralyzed for 6 mos and slowly got myself to walking with a cane and from there got myself walk again period. I can’t walk fast and a lot of times depending on the ‘pod’ aka pain of the day’ I can’t walk far. If all the pain & weather gods get together to give me a good day..I love it. Recently I’ve had 7 surgeries in 3 years for everything from breast cancer cysts being removed to ovarian cysts and fibroids..also had a stent put in my heart. and a new left hip which has now left me 1/2 in taller in one leg and how painful it is to walk lopsided. so lucky me I get more tests and surgeries. I live off the pittance SSI gives us..and really never get to do much in life anymore but see movies. I have a handicapped placard and don’t always use it. But even I have left notes on people’s cars especially when it’s a food catering delivery van using one.. I mean come on.. that’s ridiculous.. A lot of times I will chat with the person a bit to see what there disability is ..in a nice way because I’ve met a few nice people that way also.. Anyways..I hear you.. pain every day isn’t fun. Let our movies entertain us. and hey.. TV too!!!
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I’m so sorry you have so much pain, Jay.
I’m not so sure that these note writers mean well: oh, the moral highground.
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