My Day in a Wheelchair

As most of you probably remember, when I was in Australia I tore a calf muscle and spent several days on crutches and have since been using a cane to get about. The good news is that everything’s healing as it should — at this point I’m keeping the cane around as a precautionary measure — so as far as Adventures in Temporary Disability go, this has been likely a best-case scenario.

That said, I did have one relatively brief moment where I got the smallest of glimpses of what I suspect mobility-impared people go through on a regular basis. It happened when I was traveling back from Australia to the US, and I, in an overabundance of caution, asked for (and got) wheelchair assistance to get around the two airports I was going to be in: Melbourne and Los Angeles.

I will note that initially, I felt weird about asking for a wheelchair at all — my self-image is as an able-bodied person, so even though I was literally hobbling my way around, some part of my brain was “you can totally walk around this airport with several heavy bags and a leg injury!” But I decided not to listen to that voice, because that voice was stupid, as reasonable-sounding as it was inside my brain at the time.

And a good thing, because in the case of both Melbourne and Los Angeles, a) the airports are huge, and b) in LA there was the additional hurdle of customs to go through. If I had had to walk it, I suspect I would still be in Melbourne’s airport, subsisting on free wifi and Violet Crumbles. I needed the wheelchair, self-image be damned.

For the record, the first part of the wheelchair experience was pretty sweet and exactly what able-bodied people think when they think disabled people get some sort of awesome superpower: I zipped through security and customs lines super-fast, faster than I had ever done so under my own steam. Also, the Melbourne wheelchair was modern and electric powered and I felt vaguely like Professor X being carted around on it (the Los Angeles wheelchair was probably older than I am and the poor woman they assigned to it could barely push me up ramps. I tipped her hugely at the end). It was just like being a first-class passenger! Only cheaper and I didn’t even have to get up!

But then — well. So, in Los Angeles I’m at the baggage carousel and my wheelchair is parked so I can point out my bags to the woman helping me. And of course bags are coming round and people are grabbing them, anxious to get them and get the hell out of the airport, which I can totally understand, since LAX is a terrible airport all the way around.

The thing is, when they’re grabbing them, the conveyor belt is still moving, and the people tugging at them are starting to cross into my personal space, shoving into my wheelchair and pushing it around to get at their bags, rather than, say, letting go of the goddamned piece of luggage for just a second to go around me and grab it on the other side. And when they did haul the luggage off the carousel, they managed to smack it across my wheelchair, knocking me about.

The first time it happened, I was, like, whatever. The second time I got annoyed. The third time, the guy hauling the piece of luggage off the carousel actually clocked me in the head with it, at which point I stopped being patient and said “Are you actually fucking kidding me?” to him.

At which point the man was entirely mortified and abjectly apologized, because in fact he was probably not a horrible person. He just didn’t seem to notice that as a guy in a wheelchair, I was mobility-impaired and couldn’t move out of his way like an able-bodied person could. He just didn’t factor me into his worldview, which at the time was laser-focused on getting his luggage and getting the hell out of Dodge. As a result, he literally battered me. Quite unintentionally, to be clear. But that didn’t make my head feel any better in the moment.

I should note that my half hour being shoved about at the baggage carousel (my bags were pretty much the last ones off the plane) does not give me any authority to speak to disabled issues at all. What I am saying, again, is that for a very brief and limited slice of time, I got to experience what it’s like to be someone who is disabled and how people — normal, presumably not terrible people — deal with them in their world. It wasn’t, shall we say, an entirely positive experience.

It is something, however, I’ll remember when I am fully able-bodied again.

83 thoughts on “My Day in a Wheelchair

  1. I hope you remember. With the number of hits you get daily, anything you say gets a wide distribution.

    I know it’s embarrassing enough to have been carted around in a chair, and pushed by a woman of any age, but DO remember the details – and write about them.

    Maybe what you say will get through to some of the CLUELESS because it’s coming from JOHN SCALZI – and not some random not important disabled person.

  2. I had abdominal surgery about the same time as you had your problem. I was/am amazed at how weak I became. I literally could get stuck in chairs and on my bed (which is an adjustable) simply my dropping my cane. Gave me a lot of respect for what my Dad went though the last 20 years of his life with his Arthritis and what my mom continues to go through with her various ailments. I am better now – don’t need the cane – but still it was a big wake up call.

  3. I sprained my ankle right before we took a trip to the Shedd Aquarium. Rather than not go I used a wheelchair. I was 40 and thus, still visible, at least to men–until I got into that Invisibility Chair. All I saw at the Shedd was butts. People were excusing themselves to the visible and stepping in front of the ghost in the wheelchair.

    I am now 55 and thus invisible all the time. Comes in handy when I wish to shove quickly through a crowd or exceed the speed limit.

  4. A good friend of mine has been paraplegic for over half his life. During that time, he continued to ski, fly hang gliders, take up sailing and scuba diving, ride a four wheel mountain bike, get married, raise a family, remain gainfully employed (as writer and photographer), go zip lining with his daughter and be an inspiration to people like me. I spent three months using a wheel chair (sports model) even though I could hop around on one foot much of the time. As you now know, quite an eye opening experience, a glimmer of what it’s like for those who MUST use a chair all the time.

    As one chair user I met told me, rather than see people like him as “disabled”, maybe it’s better to look at the rest of us as the “temporarily able-bodied.”

  5. As a parent, I got a tiny glimpse of what it must be like to be in a wheelchair when I tried taking my baby around town in a stroller. There were countless places where it was difficult to bring the stroller, and I’m forgetting probably all the places where a stroller can manage but a wheelchair cannot. But heck, even on the subway system, there were times when the elevator would be out of service and the alternate route to transfer to a different train was to get back on the train you just got off, go to a different station, transfer there, etc, etc. At least I was able to carry the stroller down the stairs. I felt bad for everyone in a wheelchair who couldn’t do that.

  6. I like how you reflect on your experiences – it would have been so easy to just say ‘phew, that’s done, back to normal life now’.

    I was born severely deaf: on rare occasions I meet someone who can actually identify something about it (eg, that dealing with it is tiring even after 56 years of doing so). And on a couple of other occasions, friends have been temporarily deafened eg through having a bad cold, and that gave them an insight into how difficult conversations can be when you miss a quick exchange, ask someone what that was about, and get told ‘oh, it doesn’t matter’. Meaning: *you* don’t matter! Because that’s what that amounts to.

    A disability of any kind is tough to deal with. Mine being to some extent invisible (my hearing aids are small), I do get some choice in how I handle it; people in wheelchairs get none. And yes, it’s amazing how unobservant people can be, and thoughtless, without actually having to bother with being nasty.

  7. I should note that when I was ten and broke my leg, I was in a wheelchair for a substantially larger amount of time. But I don’t really remember much about the day-to-day aspects of being wheelchair bound in that case. I do remember standing up on the seat of my wheelchair once and being yelled at by my teacher about it. In retrospect she was of course entirely correct. I was apparently not very smart for a ten year old.

  8. I had a similar, but longer, experience this winter. You probably even saw me do it, John, as I was in a manual wheelchair for the JoCo cruise this time around.

    At home, I was using a walker — I broke my hip cycling, and couldn’t put weight on the leg for 3 months — but that’s no good for a “let’s run around a bunch” vacation like JCCC, and it turns out it’s dead simple to rent a chair for the week (and cheap – $100, I think).

    I already had a bit of an epiphany regarding accessibility issues before the trip, using my walker, but a walker with my “rules of engagement” is so exhausting that we didn’t really Go and Do very often until the cruise. Spending a week full-timing it in a chair, though, will open your eyes with a furious quickness. A cruise ship is kind of the best case scenario for accessibility (think about it), but there were still areas of real trouble — random “ridges” at doorways, or supposedly-gentle ramps that were brutal to power up, etc. And off the ship, on the islands, it was a real mixed bag. (We were told a restaurant in St Kitts was upstairs, but that they had an “Up” style chair lift, so we went. Well, all that was technically true, but the staircase had three landings, and so they had THREE such lifts, which was a bit of a logistical nightmare.)

    Also, while I have enjoyed all manner of Super Frequent Flier mojo in airports before, no level of elite flier enjoys a smoother path through an airport than someone in a wheelchair. And ditto the cruise terminal (Line? What line?).

    Happily, I’m nearly all better now, but I really do take away a much better understanding of what it is to have your mobility compromised. It affects everything, including and especially the way you see yourself.

  9. I broke a foot in 2011, and was in the moon boot for two months and used a cane for another month or so after that. I found it ASTONISHING how many times I’d get on the subway and people sitting down looked right at me, looked at my cane, and then pretended not to see me, just so they could keep sitting.

    I got a bit of revenge in one day, though, when I was actually sitting and saw a pregnant woman get on – and no one was offering her their seat either. So I called over, a tiny bit more loudly than was necessary, and offered her my seat. She saw my cane when she was sitting down. And the two of us proceeded to have a slightly-louder-than-necessary conversation about how goodness, wasn’t it INTERESTING that the only person to offer the PREGNANT WOMAN a seat was the woman who was USING A CANE, mercy what is the world coming to….

    Yeah, it was petty, but it felt reaaaaaaal good.

  10. I’ve used a wheelchair since birth (I’m 41) and I’m intimately familiar with the Invisibility Cloak of Disability. I’ve been jostled or tripped over countless times simply because people don’t register my existence until they are forced to do so. The notion of disability–especially visible ones like mine–freaks out most people and it seems like our brains are immensely talented at ignoring the things that make us uncomfortable. I don’t give it much thought most of the time, but I still get annoyed occasionally when it happens.

    Love your books, by the way.

  11. Not quite the same thing, but my wake-up moment concerning mobility impairment happened after an accident in high school put me in the hospital, and they had done a spinal anesthetic while they worked extensively on my thigh and knee. When I woke up, the spinal was still in effect, and so for a very long afternoon, I was paraplegic with no feeling from just above my belly-button on down. I was confined to a bed, but it was terrifying – I am 40 now, but I came away from that both much more thankful for my own mobility and with a great deal more compassion for those who have not had the luxury of just waiting for the anesthetic to wear off.

  12. I threw my back out at 23 and my hip went about six inches to the left and twisted about two inches forward. I could walk, but it was harder. It took me about two months to get back to being able to stand mostly straight again. I remember trying to walk to the store and some guy applauding me as I crossed the street. And he was hot. I still don’t know if he was being sarcastic because everyone had to wait for me or if he meant it as real support but I was floored. Either way he didn’t see me as just some girl on a walk I was either That Poor Brave Girl or I was In The Way.

    Rob Reiter’s acquaintance is right: most of us are just temporarily able-bodied. And the state of the body doesn’t change who the person is. I try really hard now to not assume that people with disabilities can’t do things, but also to be ready to be helpful if that’s needed- the same as I do for anyone else. I’m not perfect at it yet, but we all need goals.

    Also- just a reminder part of growing up is learning when that Voice In Your Head telling you to that It’s fine, you can do it! is wrong.

  13. Last year, I had a similar need to pushed around the airport and your experience matches mine. With one major difference.

    In Chicago O’Hare the service they provided was sub-optimal. No one waiting for me at the gate, several calls by gate staff before transport arrived. Being dropped off, told to go through door and check-in. At the accessibility office, where I had to wait again. A 3 hour layover turned into me being the last one on the plane.

    In Dublin, Ireland, totally the opposite. Met on the ramp, rolled through customs/immigration, baggage claim, back through security and to my flight to London.

  14. Airports are about as disability-unfriendly an environment as any I know. Don’t use a chair and you have huge distances to cover, often with less time than it would reasonably take an able-bodied person. Do use a chair and you risk being warehoused in the bowels of the earth until it’s time for your flight, god forbid you want to use your own chair to shop or stay with friends right up until the aircraft. And then you have to hand your very expensive chair over to the baggage handlersand risk getting it returned in a somewhat more Dali-esque shape than it started, to which the airlines will proclaim their total lack of liability under the Montreal Convention. And all of this in crowds looking two feet over your head (Just looking at booking my first flight as a full-time wheelie rather than wobblie, friend’s horror stories are looming large in my mind)

  15. When I was younger, I had (as many people, I guess) plenty of awesome stories I wanted to write. But being a 18-something fully able-bodied, white guy, I never even thought of writing anyone who wasn’t pretty much myself, with minor variations (a few years older or younger, a few girls, a token adult, some Asians because manga are awesome, right?).

    But I’ve worked in a hospital for the last fifteen years, and my would-be characters have diversified immensely. I’ve observed a large spectrum of physical and mental disabilities and people from all ages and origins, and the characters in my stories (okay, daydreams I guess) tend to reflect that (although there’s still more Asians, because manga are _still_ awesome, dammit). Elderly people, very young children with a broken leg, mental handicaps, near or full blindness or deafness, plain old diabetes, etc.

    With all that said, do you think that your experience, brief as it was, could end up being used for future disabled characters? SF seldom has those, and the few I’ve seen I’ve either discovered through your own Big Ideas (Mary Weber, and _thank you_ for that one, and Big Ideas in general!) or are the typical blind-but-with-awesome-radar-sense type of not-really-disabled.

  16. Long ago when I was taking American Sign Language classes. the teacher required all students to spend at least 8 hours with enough cotton stuffed in our ears to make us unable to hear. It was an informative and surprisingly emotional day, and I was too chicken to leave the house. Dealing with the hearing world was too scary for me.

    Then my knees went bad, and I spent several years being pushed in a wheelchair by my husband before I got my power-chair. I learned, among other things, that no matter how considerate your “pusher” is, they always stop the chair where THEY can see whatever you’re looking at better than you can, asking to go back to look at something often seems too demanding, so you don’t, and that being dependent on someone else to even leave the house is a special form of hell.

    The power-chair is a miracle of independence, since with the lift I can go wherever I please. I resumed my career, being able to visit clients (at least the ones with access), shop and contribute to the household. I learned that the item you really want is always on the top shelf (luckily I can stand and walk short distances), that little children who don’t see you will ALWAYS back into you or stop dead in front of you, since they’re totally oblivious to whatever they’re not focused on, that people intent on their shelf-gazing in stores will most likely step back just as you pass (so I generally put my hand out at about butt-level just in case, as I prefer that to getting a face full of butt), and that people will not only help whenever you ask, they often help when you DON’T ask, and clearly don’t need any help. Or they help when it’s actively obstructive, like when you’re halfway through a door and they rush up to hold it and put their toes in danger.

    Also that little boys are tremendously fascinated by the chair. I can see the techno-lust in their eyes. Although the other day one little cutie about three asked me if he could help me get the chair onto the lift. What a sweetie. Most little girls stare at me, not the chair, though a few want to push the controls just to see what happens.

    I always try to encourage that helpfulness meme, by being polite and thanking people even when I’m doing just fine.

    Leaving behind one’s temporary able-bodiedness does give you a different perspective (and not just the butt-level view). I too am in the invisible-woman age demographic, but the chair makes me visible again in strange and wonderful ways. And I daily thank those people who fought and won for the ADA accessibility I encounter almost everywhere I go. So much of the world would be off-limits without it.

    Maybe someday there’ll be knee replacements, but for now, I wheel on and am thankful for that.

  17. I can only stand/walk for perhaps 10 minutes before I’m in great pain, due to damaged spine. That means I cannot go to a store or restaurant on foot.
    I’ve noticed for years that, to 90%+ of people, being in a wheelchair of any sort makes me invisible. I’ve been walked into, bumped “out of the way”, simply looked through/over, almost run over in parking lots…
    OTOH, there are a few people who’ve appeared out of nowhere and given me a hand – for example, the streets in my downtown have deep drainage along each side (it rains with *enthusiasm* here) and are higher in the middle than the sides. That makes it difficult to cross in a hand-powered chair. Sometimes, when trying to cross, a person has just stepped up and offered to push me across.
    I’ve never figured out what makes those few helpful people as they are.

  18. I am a wheelchair user. Here are some things that we hate:

    * Only speaking to the walking members of the party.

    * Especially when the topic is the wheelchair user “What will she be eating?” “She’ll need to take this medicine three times daily”

    * Aisles not wide enough for wheelchairs and walkers to comfortably interact.

    * On a related note, the disabled toilet is useless if it’s down a narrow corridor with no turning circles.

    * Heavy doors.

    * Grabbing our chair without asking us and pushing us. Do. Not. Ever. Do. This. This is the equivalent of picking up an adult and putting them down someplace else more convenient to yourself. Never touch a wheelchair without the user’s permission. Just don’t.

    * Business users griping about having to put in ramps and comply with mobility standards because ‘We don’t have any disabled customers anyway’

    * ‘You’re brave. I’d rather die than be in a chair.’ Offensive on so many levels. Disabled people value their own lives far far more than able-bodied people think we do.

    * ‘You’re such an inspiration’ – when said to someone who is merely in the process of being disabled in public. As if grocery shopping or restaurant going were an act to be lauded. Geez, people, we’re just living our ordinary, boring lives.

    * People averting their eyes, as if we should be shut away from polite society. As once we were. Forgetting that the wheelchair or walker awaits us all.

  19. I’ve been legally blind since birth. My guide dog, Howard, and I do a lot of travel. It’s reat to hear people reflecting about their experiences, but my favorite part of your post was where you remarked that this gave you a glimpse into the life, but not a full understanding. Thanks for being awesome.

  20. I have just gotten crutches a few hours ago (dealing with somewhat painful gout in my right ankle) and have not yet mastered the art of getting around on them. My respect for those who must manage such difficulties on a permanent basis is rising quickly.

  21. Next time, send your threep!

    Humor attempt out of the way, bravo for using your position to shine a light for others to see what they might not otherwise be aware of. Perhaps more to the point, bravo for possessing the empathy and maturity to say “this is my tiny glimpse into what this group experiences day in, day out” and not “FML it’s so hard to be me!”.

  22. My wife often uses a travel chair when we go out. She can walk across a room, but not very much farther, so for visits to our local arboretum or museum or park, I push her in a rolling chair. It’s surprising how much planning I need to do now. Can I take her to our favorite restaurant? No, it’s up a long flight of stairs, with no wheelchair access. How about downtown? It depends on when and where, because the nearest handicapped parking spots have occasionally been far from where I’d like to go, and during crowded times or in bad weather it just wouldn’t have worked out. How much time should I allocate? It depends on the sometimes circuitous paths and maneuvers that have been worked out for people in wheelchairs. (A few years ago, at Heathrow, we missed a connection because we got separated and the service staff lost my wife for a short period. Bastards.)

    In the past few years I’ve come to appreciate the challenges that people with disabilities face; like many, I had no idea until it became personal.

  23. My husband has spinal problems (herniated aned bulging disks) which makes walking hard for him; he walks very slowly. But he doesn’t want to use a cane or walker (really can’t use a cane as he gets muscle spasms in his arms – I can just see him having a spasm and the cane going flying.) We have a disabled hang tag for the car. So far no one yelling at us that he shouldn’t be using the hang tag ’cause he isn’t ‘disabled enough’ to need it, but he gets comments about how slow he walks, honked at by cars when it takes him a while to cross a street, and so on. He also cannot drive any more, and I know not being able to drive himself places when he wants to go somewhere – and having to wait until I can take him – is very frustrating. And he has just enough of a hearing problem that the loudspeakers in stores drive him nuts, and if there is more than one conversation going on he can’t follow what I’m trying to say. (I also have to turn off the sound on the TV when we are talking at home, or the radio in the van when driving.) This entire country is not really set up to take care of very many disabilities at all. Yet just about all of us are going to eventually be disabled in some way or fashion before we end up under the lawn, whether it be hearing, sight, mobility, dementia of any sort, and so on. I work in a store that has two steps in the back, so it is difficult for folks with canes or on crutches to reach the upper level, and impossible for someone in a wheelchair to access. I have been pushing for at least one set of stairs to be replaced by a ramp the next time they renovate, and hope they will; in the meantime I live with fear in the back of my mind that someone is going to hurt themselves on the stairs, sue us as a result (or just plain sue because they can’t get access). Right now a heck of a lot of stores, hotels, etc are still ‘grandfathered’ from complying with the Americans with Disabilities Act, and I hope that most places like that do come into compliance when they schedule renovations. (I worked at a hotel that did this, but there were still rooms people in chairs could not get to or enter, etc.) After all, your customers can’t spend money in your establishment if they can’t access the goods and / or services you are selling.

  24. luggage carousels are fucking brutal, man. If ever society implodes on itself, my guess is it starts at a luggage carousel and spirals out of control from there.

  25. In many ways, I wish architects of hospitals would be mobility impaired. i realize they can’t do anything about the sheer size of the place, but when my mom was using her walker to get around (we’ve since upgraded her to a wheelchair for the purposes of speed), it would be 1) walk down a long hallway to get to a department, check in, and then 2) walk back down the same distance within the department to get to the test room. Could easily have cut that distance down by putting the check in desk at the other end. There was probably some technical reason for that, but it was a huge time and space suck.

    And the doors. I have no idea why doctors’ offices have manual doors that are super heavy and have no doorstops, but I have never gotten the hang of hauling the door open and holding it open while trying to wheel my mom through. Especially not while fighting the automatic close hinge thing at the top too.

    I’m guessing that most of the helpful people are people who have had to deal with wheelchairs in real life. Most of the people I know who are good at driving wheelchairs have worked in hospitals. It takes a bit of practice for the smooth negotiation of corners and acceleration.

  26. When I had a back problem several years ago I had to be assisted through an airport in a wheelchair. Not only did strangers completely ignore my existence, but the friend who was picking me up did too. After I was out of the crowd I had to make contact by cell phone for him to find me.

  27. I have flat feet and I have developed bunions. Bad one on the right foot. Doctor says I need bunion surgery. This means I cian’t drive for 6 weeks. I live alone and I am rather independent. At 40, I am not moving back in with my father for 6 weeks. I can get people to pick stuff up for me, but even taking the garbage out is a problem. My association requires that we bring it out the night before (after dark) and get the can the next morning. Well the get won’t happen… I can get help, but I’m a grown man… and I don’t really want to have to rely on other people this much. Been putting this off and off because I don’t want to be bothered with this. Could not imagine to have to deal with this everyday for life. Having issues walking much s a problem, but its not like being relegated to a wheel chair.

  28. My dad was in a wheelchair for most of my life, and I always got so pissed off at people. We’d be walking along and they would cut in front of us like we weren’t even there. And if I dared to actually hit them with the wheelchair (never on purpose, though I often thought about it!) they would give us the dirtiest looks, even though it was their fault they got hit. It truly was like he was just invisible.

  29. On a parallel note, my ire is largely reserved for people who can’t bear to be parted from their beloved Fido for any length of time, and so claim that their dog is a ‘service animal’. A true service animal is actually trained for years to perform a service for a person who is seriously incapacitated without said animal. Your little untrained yark-beast doesn’t count, and is a big slap to people who do require a proper service animal.

  30. I was using a handicapped restroom at a rest area this weekend, and the original latch was broken. I was going to move to another stall, when I noticed that they had “fixed” the problem by putting a sliding latch all the way at the TOP of the door. I wondered if they even thought about the fact that someone in a wheelchair would never be able to reach it.

  31. Apart from issues that others have already mentioned, my wife complains about constantly having her face at the same level as other people’s arses and genitals.

    It is a bit of an eye opener into how ignorant people are.

  32. We used assistance through airports late last year. My mom has had her hip replaced (twice!) and is pretty active but can’t stand for long periods of time (in customs, going through security, etc.) So we had requested a wheelchair to get her from connection to connection.

    Montreal was fantastic. Met at planeside, zipped through every checkpoint, customs, dropped off at our next gate. Orlando was also fabulous. Same level of assistance if we so required it. Toronto – similar to O’Hare as described above. There wasn’t a chair for mom (I hunted one down, and then got twitted for taking the “wide” chair.) There was no attendant. One had to be called. They then dropped us off at a checkpoint to be picked up by another attendant (about half an hour later) who took us to customs / security, and we had a third attendant take us to our connection. I can only speculate that for both airports it’s because they are hubs? Regardless, it was stressful for that short period of time, and gave us the briefest glimpse of what it would be like to have to deal with it daily.

  33. I got it bad, you don’t know how bad I got it
    You got it easy, you don’t know when you’ve got it good
    It’s getting harder just keeping life and soul together
    I’m sick of fighting, even though I know I should

    The cold is biting through each and every nerve and fiber
    My broken spirit is frozen to the core
    I don’t want to be here no more

    Wouldn’t it be good to be in your shoes
    Even if it was for just one day

  34. Yup, I’m 66 and disabled — who needs a cloak of invisibility? Just live long enough and be partially paralyzed, especially if the paralysis affect your face. You’d be amazed at the lengths people go to in order not to see me. I use a scooter at cons, and so far have not run over anybody who steps on front of me and then stops. But it’s been hella close.

  35. Like Chet Farmer, my girlfriend was temporarily disabled around the time of JoCo Cruise this year in a way that was going to make it damn near impossible to do, much less enjoy, the trip unless we got her some wheels (in this case, a scooter). Even with all 6’4″, ~300 lbs of me in her shadow, the number of people who flat out didn’t see *her* at all was astonishing. She could cover (very) short distances on foot, and thus got a lot of thinly-veiled “Oh, so she’s just milking it” dirty looks from some of the other passengers, though anyone watching her walk should have been able to see how much difficulty she had (and how much it hurt) due to the damage to her lower back. One, not realizing I was with her, actually said “So she’s just faking it to get to the front of the line.” (not a question) to me. I responded with a curt “Tell you what: how about you develop arthritis, then I’ll bulge 3 lumbar disks into your spinal column and we’ll see how well you can walk around this ship.”

    Fortunately, she’s gotten a lot better (though is still undergoing treatment), but a) renting that scooter saved our trip, and b) some people never look down. That’s a person in that chair, and while the legs may not work so well at the moment, the rest of them works just fine, thankyouverymuch.

  36. I’ve been following Rolling Around in My Head by Dave Hinsberger for about a year now to get a better perspective on the daily shit that visibly disabled people wade through. It helps me better understand some of my partner’s life experiences and attitudes, though zie has invisible disabilities and does hir best to pass. A friend of mine traveled with wheelchair once because of a temporary disability. She too found it very eye-opening and did. not. like. becoming invisible. She chose assisted suicide over potential long-term disability. I still struggle with that and the attitudes that contributed to that decision. But then, we had very different trajectories in life and very different backgrounds with respect to privileges and oppressions.

    I’ve enjoyed following Whatever for the last year or two as well. Thanks for such thoughtful commentary and space for up and coming writers.

  37. “Real people” have faces at the right height. No face? Then you aren’t there. :( Have you ever noticed that children lower than elbow height are also invisible?

    I don’t know how much of the ‘invisibility cloak’ is due to the face being, as pointed out quite often on this thread, at arse level instead of at face level.

  38. This is enlightening. I spent several years living in a place where I was totally invisible, while able-bodied, due to racism. I hadn’t realized that disabled people were invisible too. I guess at least I was capable of getting out of people’s way when they were hellbent on going through me, it was just really annoying that they never got out of my way once in a while. I didn’t even realize just how bad it was, because I was completely immersed in it, until I moved to where I am now, where I’m not invisible anymore.

    On another note, I’ve known people who have been disabled for a long time, but still regularly overestimate how much they can do. Then they’d knock themselves flat for days.

  39. Also if you’re not invisible to them, even if they speak to you, they will speak to you like a child, so Sylvia McIvers is right, there is the same attitude to children often. Almost like if you need help with some things, you are suddenly a child in mind as well. Though I must say that it helps if I actually press the issue by starting chats with people while I”m in the chair, and it has led to people ignoring me a lot less when I’m in it (I need it daily but can also sometimes walk a bit on crutches). I think having chatted with me they have stopped the delegation to invisibility at that time. But you keep having to do it with people you don’t know, but it works at least!

  40. Being in a wheelchair gives you a mutant ability. No, not mind control like Prof. X. Invisibility. It wasn’t that the chap who hit you didn’t take your lack of mobility into account — it was that he quite literally didn’t see you. It’s a psychological or maybe societal or both reaction.

    Just thank your lucky stars that they don’t allow smoking indoors. There’s no fear like seeing a GLOWING HOT BURNY THING coming right at your EYEBALL. And they do: your eyes, sitting in a chair, are right at the level where people hold their cigarettes.

  41. In the 20 years since my mother has been using a wheelchair, I’ve found most people are incredibly helpful (if all too often patronising), but only once they have been forced to acknowledge her existence, even if only in the smallest way.

    As a small plain woman, I too have been mostly invisible. Like MWT, I didn’t realise how bad it was until I got a mohawk in my 20s. Suddenly, I could walk straight down a footpath without having to dodge everyone whose eyes were above my head. I sometimes wish I could get a much taller wheelchair for my mother, but then I could never see where I was pushing her!

  42. We were sufficiently ill-advised to attend ChiCon 7 a few days prior to my spouse’s first hip replacement surgery. Knowing very well (from personal experience) just how much pain he’d be in during that final week when he couldn’t take any NSAIDs, I had arranged ahead of time to rent a wheelchair for him to use.

    Oy. What a bloody nightmare. The con hotel was a two-tower affair with stuff happening at multiple levels in both towers. It was necessary to take anywhere up to three separate elevators to get from one program event to the next one. And the ablebodied con-goers would literally shove their way into the elevators ahead of wheelchair and scooter users. As icing on the cake, the con organizers had scheduled events all weekend long in a room that could ONLY be accessed by way of a flight of stairs.

    The con itself, the parts we were actually able to see, was great. But the whole affair was overshadowed by the fury and frustration that my spouse experienced at being an invisible and second-class participant who could be shoved out of the way by anyone on two legs.

    I am not glad that you injured yourself, Mr. Scalzi; I wouldn’t wish that on anyone. But I am very, very glad that you were able to use it as a learning experience, a tiny glimpse into the world that many people live all their lives. Thanks for sharing it here – and may I say that I hope you will also allow it to inform your writing as you embark on future projects.

  43. Tried to fly down the steps at Victoria Station a few years ago and partially dislocated my knee. Madame Tussaud’s kindly allowed me to tour in a house wheelchair with access to the staff elevator. Mmmmm. Violet Crumble (blissing out just thinking about it).

  44. I’ve had a lot of experience with elderly parents, grandparents and various neighbors in chairs, so people in chairs or with any other disabilities aren’t invisible to me. In fact they’re very visible to me and I take great care to just get the Hell out of their way.

    When I had to use a chair and a walker after my surgery two years ago, I mostly just wished people would stay out of my way. When moving my Mum about in her chair, I mostly want people to get out of the way. So, when I encounter people with disabilities in public, I take care to give people their space.

    Peter: Wouldn’t it Be Good – that’s one of my all-time, favorite, upbeat/sad songs.

  45. I’m really glad to hear you tipped your wheelchair-pusher (erm, not sure what those employees are called) well. Apparently they get the tipped minimum wage, but are generally not allowed to ask for tips, and a lot of people don’t know that they are tipped employees, which, as you can imagine, mostly ends up in them being screwed out of a whole lot of wages.

  46. I had a couple of experiences in a scooter at conferences my employer sponsored. The problem wasn’t that I couldn’t walk, but there was no way I was going to get from one place to another fast enough. I had some low back trouble, and would have had to stop and sit down for a while along the way. Now, I am a big person, and the seat of the scooter was higher than a normal chair. So in it, I was still over 5 foot tall. So I can’t say it was the lack of seeing my face that was the problem. People would look me right in the eye, and then try to walk through me.

    It was only a week at a time, so I can’t say I suffered.. Boy, though, did I EVER learn! People just don’t want to see disability. So I make a point to pay attention and see folks in chairs. I also pointed out some problems at the office I worked at, like have doors that had signs that they were auto opening, but never adding the auto opening feature to them. Just the sign.

  47. Patricia Munson-Siter, your comment reminds me of a recent article about how cities were designed with a mythical able-bodied young person in mind. It was in regards to Great Britain, where they said the average street crossing demanded a speed of “1.2 metres a second, whereas for older people, their speed is often .7 to .9 metres per second.” I imagine street crossings in the US are very similar, as while I don’t have a disability, I do have chronic illnesses which usually prevent me from walking quickly, and I’m often in danger of having the light turn on me when I’m still in the middle of the road. http://www.theguardian.com/commentisfree/2015/mar/15/age-friendly-cities-design-future

  48. OK first things first, violet crumble is the most amazing candy bar EVER!!! Second I use a wheelchair intermittently, I’d rather walk, no matter how far if I have a choice

  49. Just read the comment on using your own chair and getting it back twisted, a friend of mine took his electric scooter to the gate gave it over to be loaded, he gets in his seat just in time to see them drop it to the ground, so he contacts the flight attendant but they won’t delay the flight. They get to the destination and a confusion of trying to rent a scooter out of town, paperwork, ect. It did end up working out, but what a pain.

  50. I had a similar experience a few years ago. I broke my ankle so bad it totally f’d up my tendons. I wanted to go to the local Irish cultural festival, which was held at a local high school, so I emailed the person in charge and asked if it was wheelchair accessible and if there would be wheelchair accessible bathrooms.They informed it was and I would be fine. In actuality, the “wheelchair accessible” bathroom had only 1 stall that would accomodate a wheelchair, and it was 2 feet from a wall and the stall door opened outward. I had to have some random kind stranger help me. That is not pleasant. And most of the activities were on the other side of the building up stairs. The elevator was blocked off for the event, as they weren’t using that hallway.

    A few months later I was out of the chair and in a stabilizing boot when I decided to go to Emerald City Comic Con in Seattle. While waiting in line for a photo op with Wil Wheaton I was used as an excuse to yell at him for being late. The guy at the front of the line was pissed and sited my injury as proof Wil was a bad person for being late. I didn’t mind waiting, and I appologized to Wil profusely when I got my turn, and on twitter, and on Wil’s blog. Of course, the guy did not care enough about my comfort to give me his spot in line nor offer the chair he was sitting in.

  51. My college roomie had multiple sclerosis and was in a wheelchair, so I learned a lot living with her on what to do and not do.

    That information came in handy after I lost portions of my hearing. After 10 years of being hearing impaired – and being hit in parking lots by cars I didn’t hear – I finally got a service dog.

    Now I spend a lot of time being harangued by people like TheMedLibrarian for having a fake service dog because my hearing impairment is invisible. I just hark back to the lessons I learned in my dorm room and try to bear up under the extreme hatred sent to me for having an adorable service dog.

    The more awareness generated about the differently abled, the better. Wheelchairs are a great starting point because they are physically present and accessibility for them is crucial.

  52. chetfarmer, I laughed picturing your “Up” style elevators as having lots of balloons.

    I don’t seem to encounter quite so many people who think I’m invisible. If they’re facing me, they see me and I engage with eye contact and a smile. But that’s just me, everyone engages with their surroundings differently. People facing away I give a pass, because my chair is near-silent, and hey, who expects a sudden wheelchair?

    Often, the chair makes me MORE visible than I’d like to be. I do get the occasional comment about “getting the good parking space.” I always offer to trade my parking space for their knees. Shuts them right up. Also, since I have a chair, I can park elsewhere and when I can find a non-handicap space where the door swing can’t be blocked, I do just that.

    It’s my considered opinion that every high-school student, as part of their “health” education, should spend a day or longer in a wheelchair, or with eyes or ears covered. See the future, feel the pain. If I get negative comments from young healthy types (very rare)
    , I just smile cryptically, and say, “just wait.”

  53. Oh man, backpacks, backpacks are my facewhacker nemesiseses. Also, there’s a weird dichotomy: to some people, you’re not invisible, you’re hypervisible, zigzagging at a hundred miles an hour (though you’ve paced yourself to a medium walk and are moving in a straight line in an entirely predictable way), and terrifyingly wide and scary. So they literally leap to the side and flatten themself against a wall (I am not making this up), or they snatch their small children away as though you’re a direwolf about to make them a tasty snack. (Even though you made eye contact with the small child fifty metres ago.) And there is a third group: people who expect you to be able to suddenly dodge sideways, despite your wheels pointing forwards.

    This is one thing I like a lot about being at Swancon, actually: there are quite a few of us, so to the usual congoers we’re just people.

    I recommend subscribing to Dave Hingsburger’s blog if you don’t already, starting with this post: http://davehingsburger.blogspot.com.tr/2009/03/elephant-disappears.html

    “I was waiting patiently in the airport, quietly watching people go by. My luggage was stacked up next to me and I felt that I looked like quite the world traveler. Suddenly this illusion was shattered when a security type guy came with a luggage cart and began loading my luggage. I sputtered a protest, ‘Hey, that’s my luggage.’

    He looked at me, annoyed and said, “Luggage can’t be left unattended.” […]”

  54. Run over their toes with no guilt. I learned that many years ago from a friend who uses a chair. It is a tiny, tiny bit of recompense for all the hassles and frustration. Heck, if I’m gonna be invisible, so are they. Oopsie. Didn’t see your {foot, ginormous backpack, fat ass} there.

    Mmmm, Violet Crumble. One of the best confections ever invented. Gotta go find some.

  55. I’m disabled, and I need to use a walker (mine is the rolling kind with a fold-down seat) if I’m going to be walking long distances (airport, hospital, shopping mall, museum, etc). A few years back, I attended an out-of-town convention for ppl with my disability. I boarded in IAH (Houston) and landed at DCA (D.C.). The ppl at IAH were wonderful, very helpful, very little hassle. When I landed at DCA I had to make it from the gate to the shuttle rental place within about ten minutes, on foot, with a full suitcase taking up the seat on my walker.

    When I’d arranged for the shuttle online, I checked the box for “wheelchair user.” Yes, I know that’s technically not the case, but the mobility issues aren’t much different (if at all). When I finally made it to the shuttle counter at DCA, the dispatcher yelled at me for ten minutes, because I “lied” about my mobility issues. “You don’t have a wheelchair! That’s not a wheelchair! What if someone who legitimately uses a wheelchair needed to be on that shuttle, but they missed their spot because you lied?” and so on and so forth. She would’ve kept right on going, but the shuttle driver finally took pity on me and said “It’s okay, I’ll take her.” As he’s directing me to his taxi, I could still hear the dispatcher yelling “But she’s not disabled!”

    When I got back to Houston, I wrote a letter of complaint to the shuttle company. The most they ever did, afaik, was to essentially send me a form letter saying “We’ll look into it.” I never heard another word.

  56. My wife is legally blind, which causes even more frustration because people assume if you’re not Ina wheelchair you don’t have a disability. Constantly at work she’s asked, “Have you thought about getting glasses,” as if there’s something more to do to help vision that’s 20/400 in one eye only, corrected.

    About 15 years ago I called to get baseball tickets at a major league stadium the proactively lauds its handicapped policies. I asked about getting tickets in a section that I knew had TVs. No one could help. Then I asked about visually impaired seating. I was told, “If you’re not in a wheelchair you’re not really handicapped.” It’s the only time I got so mad that I wrote a letter to complain. The director of the department called and I explained the situation. He apologized and took our order and said he’d take care of us. We paid a lot for the tickets, which we expected and we’re used to for the seats we needed. We get to the game and we’re in wheelchair accessible seats… Not only can my wife not see to enjoy the game, but we’re taking a spot from someone In a wheelchair who could have used it.

    As a humorous aside, I read signs to my wife constantly because she can’t see them. Then, if I go out with coworkers I do the same thing without realizing. Eventually I have to explain why I’m saying things like, “There’s a McDonalds across the street,” or “There are three different chocolate samples on the table.”

  57. I suspect the invisibility effect is an example of Douglas Adams’ “Somebody else’s problem field”. Partly ’cause it helps with the pretense that there is no “temporary” in temporarily able bodied. Partly ’cause people assume that having a disability equates to needing help, and if they don’t see you, then they don’t need to feel guilty about not acting like their own internal image of the good Samaritan.

  58. I’m one of the invisible disabled people – I look healthy, so everyone assumes I’m able bodied. I have a genetic collagen defect called Ehlers Danlos Syndrome that means, in part, that all of my joints are borked and dislocate frequently. By frequently, I mean far more frequently than most of you could imagine – at its worst, my shoulders alone will each dislocate 20-50 times a day. Now imagine that all your joints are like that. I can’t use a cane, walker, or crutches to make walking easier because that makes my shoulders, wrists, and hands dislocate. I’m not ready to go for a wheelchair yet because I’m really better off maintaining as much mobility as I can for as long as I can. So instead, I limit where I go and for how long, which I have to do anyway due to other related health problems.

    I can’t stand for long, walk very far, be out in the heat or the sun, and a whole heap of other things. When I ride on public transportation, I really DO need that handicapped seat that has a pole right beside it – I need that pole to both sit down and stand up. Unfortunately, that handicapped seat is usually occupied – sometimes by the elderly or pregnant women, but at least as frequently by younger people in their teens or early twenties who will NOT give that seat up for anyone. So I’m usually stuck hanging on to a pole hoping for dear life that I don’t fall over since if I do that, it’s a huge production to getting me back into standing mode, assuming I don’t have any major injuries. And the rare times I use the stairs, hardly anyone will give up the handrail for me – I actually do need it, but it’s doubtful that all those kids to young adults do. They seem to think I should go around them and seem to be genuinely surprised when I don’t move. I have no choice but to hang on to that stair rail for dear life.

    There is next to zero consideration for the possibility that not all disabled people are visibly disabled. Or that we actually do need things like stair rails or ramps or elevators or poles to help us sit down or stand up.

  59. A brand new library just opened here in California. I’m not going to name the city. They have a reasonable number of handicapped parking spaces close to the front, with a short ramp leading up to the level of the entrance. All good, except that a couple of feet away from the end of the ramp they put a sculpture that sticks out into the line of the ramp. This would require a sharp turn in a wheelchair to avoid the sculpture; an electric wheelchair might not make the turn at all. If they’d put the sculpture one foot to the left, it would be out of the way. Someone just wasn’t thinking. I took pictures and got the name of the person to contact. Hopefully they’ll take action before a lawsuit.

  60. Lym: Interestingly enough, there is evidence that disability simulations produce poor to no results in terms of true understanding of the lived experiences of being disabled, and that they can even in some cases can be a negative thing. The study I read most recently about this contrasted that with time spent with people with disabilities, interacting with and listening to us. In this way nondisabled folks not only learn what barriers there are, but learn how we experience them, and also learn about the specific skills and strengths and strategies PwD can develop as a response.

    Spending a day in a blindfold teaches you that being suddenly blinded as a sighted person is Really Hard. It doesn’t teach you about all the adaptive gear and skills that can be acquired and developed over months and years of blindness, or about the attitudinal barriers that blind people experience.

  61. This is totally accurate. My wife discovered the good and bad side of the issue after her knee replacement surgery when – much against her will – she had to use a wheelchair at the airports (mostly JFK and Phoenix-Sky Harbor). The people pushing the chairs were wonderful and yes, it was hugely helpful and fast zipping through by the secret elevators and going to the front of the line. But you really do see what disabled people have to put up with daily, if even on a small basis. Some people just do NOT give a crap about anyone but themselves and will happily shove you aside to get where they’re going a few seconds faster, even if they are going to be waiting an the gate for an hour. And some airport workers (hello, TSA) just do NOT care if you can walk or not.

    All of us need to have our eyes opened like this every once in a while. So people, if you see someone in a wheelchair (not only at the airport but on your home turf) make sure you do what you can to help rather than hinder them.

    /gets off soapbox

  62. I spent 3 months in a wheelchair after fracturing my pelvis & learned a lot about “accessible design”. I was trapped in a “accessible” restroom once because the door opened the wrong way & I could not get my chair into the space next to the door and still open the door. I think every architect, designer and builder should spend a month in a wheelchair, it would alter building design and make the world a safer, better, place for those who do not have a choice.

    And don’t get me started on those curb ramps that are supposed to make getting across streets easier. Many are more dangerous than just going over the curb because their failure is not immediately obvious.

  63. A couple of random musings:

    1) A friend of mine uses the word “TABs” for “Temporarily Able Bodied” – it’s a stark fact that all of us will be disabled to some extent in later life, up to and including that final disability of being breath-impaired. Without being technically disabled, I already have some limits due to bad knees and things I used to never think about now need planning…

    2) BBC Radio 4 used to (perhaps still does, they’re always moving stuff around) have a programme about disability issues. With their usual slightly snarky approach to such things, it was entitled “Does He Take Sugar?” – which is the same point @Happyturtle was making.

    Not only sometimes invisible, but patronised when visible.

    People can be dicks.

  64. I’ve now spent almost half my life in a wheelchair. I’ve learned how to ask questions about new places and listen carefully to the answers.
    Q: Are you accessible?
    A: There are just two steps to get in.
    So…you aren’t handicap accessible.

    Invisibility is painful. I make aggressive eye contact and engage verbally. All the coping mechanisms you learn because it isn’t socially acceptable to say things like, “JUST GET OUT OF THE WAY.” to someone who thinks they are “helping.”

  65. @origuy: if the person is at all not-totally-helpful, you might point out to them that there is no ‘safe harbor’ period under the ADA, and that in California, there are a handful of people who make quite a nice living (either as professional plaintiffs or as attorneys) finding ADA violations to sue over. And if the library doesn’t fix things, well, I’d call one of those people and hand them the photographs.

    I used to be more disapproving of that kind of behavior, and then I had a friend who worked for a nonprofit program dedicated to helping small business owners comply with the ADA, particularly given that in this area there are a lot of old buildings. They would essentially go door to door with materials explaining the program, which also offered subsidies. Out of hundreds of businesses, you know how many actually expressed interest in the program?

    Four.

    So, yeah.

  66. I have had MS for 30 years. I am fortunate to be still walking (slowly and with a cane) and working full time. Beside the usual accessibility issues I have some invisible ones. I cannot go anywhere unless I know where the bathroom is and I can get to it.

    Fun stuff I’ve run into recently: restaurants that have an accessible washroom in the damn basement, ramps that are so steep I can’t get up or down them.

    I was going to rant about the invisibility of the plain middle aged disabled woman but I’ll refrain. Instead I’ll say thanks to the total strangers that have helped me when I dropped my cane or my keys, gave me their seat in a waiting room, went out of their way to open a heavy door for me.

  67. I was in a wheelchair for several months while living in New Orleans. While there are many inaccessible places everywhere, in New Orleans they’re the default. It was incredibly frustrating because almost nothing there can even be retrofitted, everything is so old and small; the occasional curb cut is about it. Fortunately, I was able to use crutches around the house — even though it meant going up the stairs to bed on my behind — but it sure gave me some good insight as to that invisibility cloak that apparently accompanies every wheelchair in the world.

    Many people also assume that blind people are deaf, too. I would go into a restaurant with a blind friend and the person seating us would ask ME, “Does she read Braille?” To which my reply was always, “Why don’t you ask HER? She’s blind, not deaf!” A bit of embarrassment is well worth it if it causes people to start noticing people around them with a bit more awareness.

    And let’s not forget the very short. My daughter has a form of dwarfism, and as an adult is only 4’2″ (127 cm). Even when she reached adulthood, she would often be given a children’s menu in a restaurant. Again, embarrassment is a useful tool. Other than the height of her head above the ground, it’s not like she looked like a child, for heaven’s sake! Many people have suffered extreme embarrassment again as a result, and frankly, much-deserved. I lost my patience for that type of obliviousness many years ago, as did she. On the other hand, she lives in an apartment designed to be wheelchair-accessible, which makes everything at the perfect height for her, which is nice for her!

  68. I remember before the ADA passed. It was hard. I spent a few months in a wheelchair and on crutches when I was ten. I still remember the bathrooms were the worst. Too small, doors unable to close even without my chair because my casts were in the way, my mother having to pick me up to get me into the stalls and on the toilet. I was ten, and that made me angry and embarrassed every time.

    I should note it wasn’t all bad experiences. There was one place I had fun with my chair. I remember going to the museum for drawing classes, and racing down this super long corridor to the cafeteria. I certainly milked that. Who’s going to give a kid in a wheelchair a hard time for racing, even if it is a museum where a normal kid could not run and play?

    I still notice ramps and other wheelchair accessible elements. But the bathrooms still bug me the most. I often redesign them in my head. Why did they put the grab bar there? What were they thinking with this door? Why so little space in front of the toilet, or next to it? Holy cow, they put the toilet paper dispenser there, at that angle? Did they sit in a chair before they put in that sink? Why is the hand dryer that high? Hello, did they actually test this bathroom before/after they built it?

  69. And, it’s obvious that this additional perception isn’t active at 100 all the time. I missed that bit of ableist language using “normal kid” damnit! What I should have said was “a kid who wasn’t in a chair.”

  70. John Scalzi said: “I should note that my half hour being shoved about at the baggage carousel (my bags were pretty much the last ones off the plane) does not give me any authority to speak to disabled issues at all.”

    Its my experience that most of the people you see in wheelchairs are among of the toughest sons of bitches on Earth. The whiners and weaklings die early, the hard asses are the ones who refuse to die and keep gutting it out every single day. I’ve seen people face the most heinous injuries and just keep going because they just refuse to stop.

    I’ve also seen guys “poor me” themselves into an early grave.

    All the pussyfooting people do around “disabled issues” is just more political correctness and BS. For the most part the disabled don’t give a shit what you think and will tell you very loudly if you’re in the way. As a group they’re not shy and they’re not patient with fools. Having already lived through the worst life can throw at a human being, its really no surprise.

    I was sitting with a guy in a power wheel chair who was once a garbage man, but passed out at work one summer day and woke up a quadriplegic. We were in the lobby of the medical building waiting for his cab to take him home, and I was pouring Coke into his mouth for him because his hands were so spastic he couldn’t grip the can. He was telling me how stoked he was to be going to Vegas, because he was going to finally get laid for the first time since his accident. Apparently there was some outfit down there that specialized in that kind of thing, there was medication involved as well as hookers.

    So we’re sitting there, and out on the sidewalk we see this fat woman motor past in a power wheel chair. With a Seeing Eye dog. He looks at me and says “Every time you think you’re really fucked, you see something like that.”

    That’s who “disabled” people are. My advice, don’t get in their way.

  71. Lauredhel, very good points, thanks for posting that. What I found valid about my described day deafened is my own internal reliance on things one can hear, and my emotional response to being deprived of them. I would guess that such experiences having a relevant benefit would depend on a person’s empathy quotient and capability for self-reflection. Both may be lacking in high-school age students, granted. Close and continued interactions with “people not like me” for whatever values of “not like” may be out there is always valuable, I think.

  72. I’ve been dealing with a herniated disc pinching my sciatic nerve for the last year (surgery a month ago fixed it though!) and had a similar experience of realizing I couldn’t walk through the airport on my own and so requesting wheelchair assistance. What I honestly found most disturbing is that the person assigned to help me was exceedingly careless when moving me around the airport. I knew that if he lost control of the wheelchair, there was nothing I could do to stop myself from falling, so it was pretty terrifying when he was dodging around like it was a race! Walking with a cane for a year was an interesting experience since you find out a lot about people when they make the snap decision to make room or hold the door or not. Thanks for writing this!

  73. Thank you so much for sharing this thoughtful perspective. As I have arthritis in both spine and hip, I know canes and chairs are coming for me, so this really resonates – and reminds me to look and be mindful of all others at all times.

  74. Two words for the worst wheelchair hell I have endured to date: DragonCon elevators. People were so incredibly rude and unhelpful (on top of all the general accessibility issues at a con) that I gave up on DragonCon after a number of happy years there.

    Quite frankly, a drunk at an NFL game was sweeter and more considerate than my fellow geeks at DragonCon.

  75. Not to be a Debbie Downer, but….there is a fantastic blog called “Bad Cripple” written by William Peace, a paraplegic and disabled rights activist. You should check it out, because as inconveniences as you were for the few days that you were in a wheelchair, this blog is a great sobering reality check for the able-bodied masses. It can be found at http://badcripple.blogspot.com/.

    Btw, I first found this blog last year on an article at ESPN.

  76. “So we’re sitting there, and out on the sidewalk we see this fat woman motor past in a power wheel chair. With a Seeing Eye dog. He looks at me and says “Every time you think you’re really fucked, you see something like that.””

    Yikes, phantom182 dude, speaking as a fat powerchair user often seen about with a dog, would you mind? A little bit of Wheaton’s Law, hm?

    In fact, being a wheelchair user intersects with All The Things in the same way as being any other sort of human does. Some disabled folks are, as you say, “tough sons of bitches”. Others have social anxiety, depression, other mental health issues, severe energy management issues, chronic pain, and whateverthefuckelse, meaning that we’re sometimes perceived as “whiners and weaklings”. Yeah, I have been known to say “EYES FRONT, BIPED”, or tear strips off some person who told me their place was accessible when it had a 1:4 ramp and no loo. Other days? Not so much.

  77. Wheaton’s Law

    It’s been unexpected, but where I run into rudeness most often (much of it unintentional) is among the elderly. My wife has disabilities severe enough that she and I moved into a retirement home for a few months, when she was 49 and I was 50. (It’s a long story.) We go back to visit our friends and acquaintances there every few weeks, and I don’t know if there’s been a single visit when someone hasn’t said something about my wife that I’ve found rude. “What’s wrong with her?” or “Where’s all her hair?” or “She’s in really bad shape,” or “She’s gotten a lot worse.” It might be someone hard of hearing making a loud private comment, or someone with mild Alzheimer’s disease, or someone who’s just not a very pleasant person, or a combination. A couple of times I had to shush someone who seemed to want to be deliberately cruel.

    Anyway… In general, I think it’s important to pay attention to the language we use. Partly so that people aren’t marginalized. And partly because it’s just common politeness!

  78. A few thoughts after reading the comments to date. If you want a pretty good insight into being disabled in contemporary society, go read ‘Lock In’ by some guy called Scalzi , the attitudes experienced by the Hadens from the supposed normals there are a pretty good representation of what we face in day to day life (including the physical assault, been there, done that, won – don’t attack the guy carrying two clubs). Our host really did hit the nail on the head with that one, which is another thing that peeves me about the Sad Puppies claims to be backing diversity, if there was a word of truth in it ‘Lock In’ would have been at the top of their slate – I was hoping to use its inevitable position on the Hugo short list to trigger a discussion about how SF handles disability (or mostly doesn’t). The sad reality is that Disability Discrimination (and Disability Hate Crime) is far worse than most people believe, or are willing to accept, I actually had people call me a liar after an interview in a national paper where I talked about stuff I’d experienced personally.

    The mention of Invisible Disability is an important one, but remember people may also have multiple disabilities (and intersect with other minorities), the disability you see may not be the only one they’re dealing with – I’m neurodiverse, with dyspraxia, Ehlers-Danlos Syndrome and Chronic Pain Syndrome – none of those necessarily show, it’s only the fact I use crutches or a wheelchair because the EDS and CPS make walking too painful that shows I’m disabled, but the mobility aids actually make it more difficult to get people to acknowledge the things that make me need them!

    Disability politics rejects the idea we’re objects of pity (clearly not a positive), inspirations (nastily insidious, it robs our actual achievements of meaning, while insisting that we could all be paralympians if we tried – an editorial in a national paper actually said that during the London Olympics), or anything other than normal people. And as normal people we expect to have the same opportunities, and to be able to go to the same places as other normal people.

    A few people have mentioned access at cons, there are a lot of good people trying to get access at cons right, sometimes it works, sometimes it doesn’t, but people are trying. And it does need everyone in the crowd to remember to look down occasionally, rather than trying to walk through us! I wrote up my experience of doing Worldcon on Wheels, which should hopefully be linked off my name at the start of the message (I’ve since switched to using a chair full time – mostly as a result of realising how much easier it made things).

    And a final pet peeve about disabled bathrooms seeing as they’ve been mentioned, ones with the mirror set only for sitting height! Oddly enough not every disabled person is a wheelie.

  79. I use a wheelchair and have done quite a bit of flying. I used to fly several times a year when I was involved in competitive wheelchair racing although now I fly only once or twice a year, mostly to travel to conferences. I have a bunch of “flying with your own wheelchair” pro-tips that would probably only really be useful to people who use their own manual wheelchairs but haven’t done much flying:

    Always get your wheelchair gate-tagged, meaning that they will arrange for it to be brought to the gate when you get off the plane not just at your final destination but at all connections. If you have your own wheelchair, you’ll probably like it a lot more than the crummy airport ones. You might also be able to get to your connecting flight faster than at the plodding pace some airport employee will push you. (In my case I also *hate* being pushed. I have to do this to save my own sanity.)

    Along with that, plan to arrive at least 20-30 minutes early so you can pre-board as well as get the gate tag. Some airlines/airports won’t let you gate-tag your wheelchair unless you meet some minimum connection time requirement of 60 to 90 minutes. Not only will you likely be one of the first peple on the plane if you pre-board, you’ll probably also be about the last person off the plane, cutting in to your connection time. Plan accordingly when making reservations.

    Try to get seat reservations close to the aircraft door. Whether you have to use an aisle chair or have enough mobility to get to your seat yourself, you’ll save some time and effort.

    Luggate carousels are the worst but you can make them more survivable by avoiding the herd mentality and finding a spot away from where the other people are congregating. Remember, it’s a carousel — your stuff will come around again if the mob are all blocking it fighting for their luggage.

    Special pro-tip if you’re flying to Germany: When you land and the fire truck pulls up next to your plane, it’s probably not because your plane is on fire but because German airports employ their firemen to provide accessible transportation as well.

    Finally, John, you triggered one of my pet peeves when using the phrase “wheelchair bound”. You’re a writer and should know about avoiding tired, hackneyed phrases. Saying “uses a wheelchair” is a lot more accurate and just as brief. (Rule 34 implies there must be some kind of fetish around being tied to a wheelchair. I am so tempted to find some images of it and lob them at the lazy journalists who use the phrase “wheelchair-bound” just to embarrass them.)

  80. I’ve found the Accessible Writing Guide very useful when I’ve done academic writing in computer science that has touched on people with disabilities.

    The recommendations in this article reflect current thinking on language for writing in the academic accessibility community. Certain words or phrases can (intentionally or unintentionally) reflect bias or negative, disparaging, or patronizing attitudes toward people with disabilities and in fact any identifiable group of people. Because language can convey these things, it can influence our impressions, attitudes, and even actions. Choosing language that is neutral, accurate, and represents the preference of the groups to which it refers can convey respect and integrity.

    We have attempted to gather suggestions for terminology that currently reflects the preferences of various disability groups and accurately portrays those groups.

    “Wheelchair-bound” is listed as a term to avoid.

  81. I had crutches and a plaster cast for six weeks when I broke my ankle. Yes, I broke it right good. It wasn’t allowed to bear any weight. After six weeks my doctor moved me into a walking cast, but still wouldn’t let me bear weight, so those crutches went everywhere I did for a full three months, until after I was done with physical therapy. That was eye-opening, too. I don’t remember if I was more angry or more helpless as countless doors were allowed to swing shut in my face, or when I saw perfectly able-bodied people come out of the special-needs stall in the ladies’ room. Seriously? People? So thoughtless. And occasionally weirdly hostile. As though my impairedness meant I should remain a shut-in. There’s plenty of time for that later, when I finally go mad and move into my attic.

    Suffice to say, I never use special-needs stalls in the ladies’ room, now that both my legs work.

  82. I moved in with my dad and occasionally had to push him with borrowed wheelchairs when he got tired; Parkinson’s, several heart attacks. I knew intellectually the problems before I helped (Mom had vented) but the visceral reaction after seeing a repair man park in a handicapped space was different. And don’t tell me how nice I’m being while I’m trying to get something done! Thanks, but you are getting in my way.
    In college one of my friends had a guide dog. We couldn’t really talk in the halls because she had to keep repeating “The Dog is working. Don’t pet the dog. Please move out of the dog’s way.’

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