written on the plane, the other day
When I enter an airport I'm in hostile territory. Dread and courage fill me. In addition to the dehumanization everyone around me is about to experience, the stripping off of possessions and shoes like Inanna entering the underworld, the x-raying and knowledge that any random act, out of our control, could result in police intervention, in taking away our illusion of freedom -- in addition to that I am covered in the cloak of wheels, I have lost my human soul, I know that in the eyes of power and ignorance, I am luggage, an inconvenience, an animal, an exoskeleton.
Airline and airport staff talk to each other loudly over me. I am "The Wheelchair". What I say, what I ask for, what I want, doesn't signify. My words don't mean a thing. My money can't buy human dignity. I have lost my Agency. Speaking creates a cognitive dissonance, a problem, an incident. Inside myself, I have become bravado and willpower, entitlement and stubbornness.
Let's glide over the shunting into special lines and glass walled holding pens and pat downs... Let's ignore the issue that the law (the Air Carrier Access Act, in the U.S.) says the airline *has* to let me break down my chair and put it in the cabin, which they almost never will allow, instead *taking away what is crucial to me* and throwing it in the hold of the plane, perhaps to be left behind or damaged, the non-acknowledgment that them taking my wheelchair away puts me in a state of absolute panic. Let's leave those problems behind.
Let us skip to the Gate.
Here is an example of how the illusion of human decency, manners, could be preserved.
Me (having waited my turn): Hello. I'd like a gate tag for my wheelchair please.
Gate Agent: Here you go. Would you like to pre-board?
Me: Yes, thanks.
Gate Agent: Please let me know if we can do anything else to assist you.
Or this:
Me: Hello. How're you doing? I couldn't get a seat near the front of the plane. Could you try to get me an aisle seat near the front? Otherwise I have a hard time getting on and off the plane and getting to the bathroom.
Gate Agent: Oh, the plane's pretty full. We can probably move you up though since our airline keeps a few seats near the front of the plane open till the last minute for people who need them. Or, I could just switch someone out. Or I will ask the flight attendant to find someone to switch with you once you are on the plane.
Me: Thanks. If you can't move my seat now, I'm sure someone will switch if I ask once I'm on the plane.
*I happily go whooshing down the really fun ramp.*
Flight Attendant: Hello. (Unfazed and correctly assessing situation.)
Me: Hi. My chair gets gate checked and I have a tag on it. When it actually gets put on the airplane, could you let me know, so that I have that assurance? I need to know that it hasn't been left behind.
Flight attendant: Sure. Do you need any other help?
Me: Oh, I can get it, but if you don't mind, would you mind putting this bag over 6A?
Flight attendant: Sure, watch your step.
Me: Yup. Thanks.
Flight attendant: *Doesn't watch me get on the airplane in a hovering way as if I'm a freak show stuntwoman, or going to face plant*
Once in a while, one tiny leg of travel will go smoothly with most of these elements. People will behave with normal politeness.
Here is how it usually goes instead, an example with everything gone awry.
Me: (waiting in line)
Gate Agent: (in hurried conversation with other agents who have flocked about in dismay) Can you help out The Wheelchair?
Me: *shoots fuck off rays in every direction*
Gate Agents: (more and more agitated)
Me: *pretends to ignore it*
Gate Agent: Miss, MISS? You need to come over here. Did you fill out paperwork? Why don't I have you down? Are you travelling alone? I'll need to call someone. You need one of those, a special, a ...?
Me: I don't need an aisle chair. I don't need any extra help, thanks. Could I have a gate tag for my wheelchair?
Gate Agent: You need to do the paperwork. It's our policy. If there's a wheelchair, we have to do the paperwork. Why didn't they do this at the front when you checked in? We'll need to take that wheelchair and check it now.
Me: No, sorry. I'd just like a gate tag.
Gate Agent: We'll take care of that.
(They want me to get into an airport-owned chair, and take my own chair away. To make sure it doesn't get lost? To treat it like baggage?)
Me: No.
Gate Agent: (Argues) (Calls people) (Consults all other gate agents, flight attendants, the pilot, and/or security officers)
Me: Bye.
Gate Agent: Here's your gate tag. *comes around the kiosk thing* I'll just put this on here. *Bends over, touches me or grabs my shoulder or the back of my chair, and tries to strap the elastic band of the tag onto my WHEEL.*
Me: I'll take that, thanks.
Gate Agent: Persists in trying to strap tag to my tire. Argues.
Me, firmly: Thank you, but no. I'll put that on. THANKS.
Gate Agent: But I have to just, let me...
Me: NO.
Gate Agent: *sends me major hate rays* (In their mind, I have not properly accepted and appreciated their noble, generous help.) You'll need to check this wheelchair at the door. They'll bring it to you at the other end.
Me: Yes, I know. THANKS. (Special fuck-off-and-die smile.)
Later
Gate Agent, with several other flunkies: Miss. MISS!!!
Me: Yes?
Gate Agent: We need you to preboard now. *grabs wheelchair*
Me: LET GO OF ME.
Gate Flunkie, talking real loud and slow: I need to help you get on the airplane Miss. *grabby McGrab*
Me: DON'T TOUCH ME!
Gate Flunkie: I need to help you get down the ramp.
Me: Thanks. No you don't. Stop. Thanks very much but no.
Gate Agent: Excuse me Miss but we're trying to help you. It's our policy that...
Me: I don't need any help thanks very much.
Flunkie: I have your aisle chair and...
Me: I don't need one. Thanks. No. I'm getting on the airplane. Byeeeeeee.
Flunkie and Gate Agent: Miss! Misss!!!!!
Me: *wheels fast down ramp*
Flunkie, running after, grabbing: I have to walk behind you!
Me: No you don't. Get off me.
This almost always happens. Not every time, and not all of it at once -- EXCEPT FOR MOTHERFUCKING TODAY ON STUPID US AIR, but it happens enough that I go a bit crazy anticipating it. I usually get on the plane mad as a hornet, humiliated, outraged, and overdetermined not to cry.
Keep in mind that I barely need any help or special consideration, yet I still get treated with amazing inconsideration and disrespect. People who need help transferring or other help get even more disrespect. Likely I'll be there someday; will my anger have burned me into a little cinder, by then? How will I cope? (Huge props to you all who have worse struggles than mine.)
Today I arm-checked a particularly obnoxious gate agent who would not stop trying to grab for my chair back and my shoulder. I just threw my arm out and blocked her hand hard enough to hurt. It left a bruise on me and likely on her. I feel lucky no one came to arrest me for assault. She was really mad. But, I told her not to touch me, and she kept grabbing. She went beyond grabbing the back of my chair and was on my shoulder. I felt mad enough to get in a fist fight right there. I was so mad I got on the plane without giving anyone my ticket.
No, wait. Back up. If we're in Europe or China, or probably anywhere else other than the U.S., pretty much the instant I set a wheel into the airport or train station this will happen:
Me: *wheeling along about to go to the bathroom or shopping or something*
Random station employee, very agitated, grabs me: Miss! Miss, let me help you.
Me: What?
Random station employee: You need to come this way. *tries to start pushing my wheelchair.*
-or-
Random station employee: Excuse me sir, is she going to need help getting on the train/plane?
Me: Hello. I'm right here. You can talk directly to me.
My companion: *drools, twitches, and plays dumb*
Random station employee: Sir, will she need a ramp or a lift? Could you please come this way?
Me: HELLO!!!
In Budapest they tried to put me into an ambulance to travel about 200 feet from airport door to airplane stairway. (I got on the bus everyone else did, instead.) In Hong Kong I did a little dance with a woman whose job it was to push me - I wouldn't let her grab my handles, and I was faster than she was, and swivelled to face her whenever she tried to go around back.) It has me on edge. I expect absolute bullshit and disrespect, "it's our policy", and when it comes, it sinks down inside me like a stone, I swallow it, I swell up with possibly disproportionate rage and pride. I do more than I would otherwise, while I can, to show away, to prove these fuckers wrong, to spit in their faces.
But back to the U.S.A. and its airport situation.
I know, it is just some bad "sensitivity training" and clueless people, who have mostly to deal with older folks who have an attendant or relative travelling with them. I would like to readjust their training.
If you work for an airline or somewhere, and you see a person with a disability, you might assess whether they look like they need help. Or offer once, and back the hell off if we say no. For example, I have obviously a business traveller who just wheeled myself through an entire goddamned airport. I value my independence. I know how to ask for help if I need it. GO HELP SOME LADY TRAVELING WITH 3 CHILDREN for god's sake. She is the one who obviously needs help. Push her stroller for her, if you must push something.
Their training seems to be in one mode. That is: An object (formerly, perhaps, a person) comes in a wheelchair, pushed by a helper. That helper will need even more help transferring the person-in-wheelchair to an airplane seat and out again.
If the wheelchair belongs to the airport, then the agent has to call the other end or enter something in the computer system, so that the destination gate has an airport wheelchair and staff to push it so that the casual wheeler or older person without their own gear can get through the airport. (However, this never ever works and it is always a big surprise on the other end, causing more consternation and kerfluffle.)
Or: radical shock, the person might have their own wheelchair. The agents never expect the wheeler to be traveling alone. They're very anxious if you don't have an attendant or companion. I think they're worried, perhaps from past experience and with reason, they will have to assist a difficult transition from chair to aisle chair to seat. The agents AND the flunkies who push the chairs should be educated in the variety of people's level of ability.
I also know it's not the end of the world that once every few months someone tries to cross my boundaries and won't listen. Cry me a river... A lot of people with disabilities have to put up with that shit all the time, every day, and tolerate all sorts of things, because they have to, to survive.
I would like to continue from here to talk about race and disability for a moment. Being patted on the head and grabbed in airports is not in the same league as the racist assumptions, threats, and violence that, for example, black men or men assumed to be "arab" face in the same situation. We don't have to compare those things, but I want to point that out, in part because I don't think most white people think about it, but in part because I feel sometimes like it is black men in many situations who notice the bullshit way I get treated as a disabled person and who throw me knowing and sympathetic looks, that they GET IT... and with the added dimension of laughing at me a little for my inability to hide my anger and for my assumption that things could be different, for my sense of privilege and entitlement that means I display outrage and am not afraid of being treated as a threat and dragged off to some concrete holding cell (though, in fact, I am a little afraid of it.) I often appreciate those knowing looks and sympathetic remarks. Even when they are a little bit amused or scoffing... It is a little bit like gaydar, an eye contact held an instant longer than usual, with a little spark of sympathetic communication. What do you think of my perception? And that it is particularly gendered? I am unsure what to make of it.
Women with little children are also noticers of ridiculously dehumanizing police-ish petty bureaucrat behavior; they expect it, they don't get particularly dehumanized but are treated with a bit of extra hatred and the expectation of inconvenience and something of a burden of guilt. We bond with the sympathy of those who are Inconvenient, bulky, overflowing the boundaries. That bond is more the bond of concrete offers of help. Amazingly, it is women overflowing with children, overburdened, who speak to me with humanity. I always try to help them too. I entertain their children, I get them to stop crying, I offer them trinkets to look at and hold, I draw pictures in my notebook or teach them finger games, I give them rides in my lap if we make friends or merely point out my sparkly LED wheels.
On the last leg of this flight I sat near the front of the plane, not presuming to first class, or the first row of the coach section, but picking an aisle seat in the second coach row. I planned to ask the person sitting there if they would switch with me - my seat, which I couldn't get anyone at the gate to help me switch, was in something like row 25, also an aisle. A significant distance for me at that moment as I only had a cane, not my crutches, and it was a long flight where I'd need the bathroom more than once. The man whose seat it was refused to change. The man across the aisle was outraged, and got up to change places with me. I cried with gratitude. When we got off the plane, I shook his hand. The whole flight I had to sit next to the selfish asshole who did not appreciate the fact that to him walking 20 extra steps was trivial. I wish him a special place in hell. Truth be told, for all the hours of the flight, I wished him to be disabled and face that wall of inhuman indifference. Someday, he will be old, and the wall of ignorance he built for himself will wall him off from the rest of humanity, because assholes like that don't have friends or family left by the time they feel the effects of age. I don't like festering in that level of bitterness, but sometimes, that's where I end up, ill-wishing others so that they'll learn their lesson, though they won't, and it's pointless. Conquering that internal resentment or hatred is part of the difficulty of being disabled, I think.
55 comments:
Wow - great post. Should be required reading for all public transportation staff.
And yes, I agree it's a lack of proper training or education, but it's still completely inappropriate - and stupid - behavior.
I'm glad to have your blog, and will look forward to reading more.
Warmly
Cheryl Antier
"GO HELP SOME LADY TRAVELING WITH 3 CHILDREN for god's sake. She is the one who obviously needs help. Push her stroller for her, if you must push something."
Amen!
BTW, I am memorizing all of this for the day I am at last working in the medical field. I'm sure people wind up being treated as parcels there too.
I'm glad you wrote and posted this. The highest concentration of entitled, inconsiderate fucks (for me, at least), is always at airports.
Just reading this and remembering how we were treated by airline personnel when we had two babes in arms makes me boil.
I wish I could have been there for the arm-check. Perhaps to hold up a sign with "10" on it.
Oh you nailed this one Liz. It's why I loathe traveling: the combination of security theater and mainlining adrenaline is too hard on my body!
You are definitely on to something re: the mutual eye-dap with African-American men. (Good thing, too, since that cohort supplies all the wheelchair pushers I've encountered).
Intriguingly, I have had better luck gate-checking power chairs than manuals. Perhaps because the chair is an intimidating complex machine, and the gate agents know that I know more about it than they do. The tricky part of that negotiation is identifying the nearest cargo elevator ahead of time, so I can continue to reassure them that no, they won't have to carry the 300# chair down the jetway stairs, all they have to do is take it out of gear and roll it to the cargo elevator.
Ugggh.
I walk more slowly than I used to and I have more medical devices to take with me. These developments have more or less kept pace with the increase in Sekurity Theater.
No, you do not get to throw away my insulin even though it is a liquid.
No, my cpap machine is not a bomb.
Nor is it a privilege because it means I get to carry on three bags instead of two. This is true no matter how many hate rays you beam at me.
@hazelbroom: At their worst, hospitals are like that, only more so.
Had so many of those experiences myself ... and now that I am not walking at all on planes things are even worse. "Oh, I remember you ... suspicious glance ... you *used* to be able to manage... suspicious look.
I think the race analogy is more complicated than it seems. I agree that TSA treats people of color worse; beats me why since many TSA agents are people of color. I agreee that many of the pushers are of minoritized racial and ethnic descents.
I wonder, however, about what you think black men see versus, say, black women -- yes, travel discrimination is worse for men of color who might be seen not so much to be in your words "arab" but Muslim (denotes a larger range of physicalities).
And here's another question that I wrestle with ... how can you tell the difference between an eye dap for shit dished out on the basis of gender or on the basis of disability? In other words, are your men seeing you as you a white disabled woman, a white woman, or a disabled woman?
Not meant antagonistically, but reflectively since as a woman of colour with a disability I never know quite what the dominant lenses of difference or alliance might actually be.
WCD
@WCD: I can't tell the difference or what is up very well - I'm musing on it kind of raw and I could be completely misinterpreting people's looks. Now why I mention men in particular, lord knows maybe I'm noticing men more than women, though that would be embarrassing!
Also, I have no idea if men of color get treated worse in airports than women of color. That's my assumption... possibly quite wrong...
I agree with you, being a person of color being treated in a racist way in the airport (or being aware that that is a possibility at any moment) doesn't map to my experience being a white disabled chick. I didn't mean to sound like I was equating them. Commonality likely is sharing some annoyance and a certain amount of pragmatic resignation at being treated badly, and knowing that pushing back on it will likely make things worse.
Now in some ways the shit that goes down in airports between TSA, other staff, and travelers could be seen through class-based lenses. So there are situations where behaving as upper class people behave gets you your way. But you aren't going to buy your way onto the plane by acting arrogant and entitled at the gate! You know what I mean?
My best allies in airports are really the other techocrats who cluster round the power outlets in a little tangle of wires and chargers. Though, again, that might be a lens of class.
So back to your musings and questions, when you say you wonder about what black men see vs. black women, what do you mean? Like, what do they see when they see a white chick who looks like abby cadaby on wheels go all formal and polite, and then lose her shit and tell a TSA agent to fuck off? I wish I knew! I was kind of speculating there's an element of "LOL, right on, but, Jesus fuck, if I did that, they'd arrest me."
This is my first visit to your blog. Great post. You're an awesome writer.
The crowd over at dot_gimp_snark over on LJ is debating whether you would have gotten pissed at an invisibly disabled person that refused to give up their seat on the plane for you. Would you care to come over and clarify? Disability infighting like this weakens the community as a whole, so it would be nice to have your perspective on the discussion.
Coming over to dot_gimp_snark. What the hell. Grrrr.
@tiffany Hey, I went over there and clarified a bit. I agree it is a good point about people with invisible disabilities or health issues. I've been there myself - looking fine, and feeling awful. So I try not to assume. The guy who wouldn't give up his seat for me was sneering and hostile. He also said he didn't want to be stuck in the back for when the plane unloaded.
Anyway, of course i wouldn't be mad at a person who I asked for help but who then gave any clue they couldn't b/c of their own problems!
Hey Liz,
Thanks for the clarification. I didn't for a second think that you would happily insist on an invisibly disabled person moving for you. It just pains me to see how fast the invisible disability community likes to assume that anyone with a visible disability must be out to get them, and vice versa.
who knows anything, right? We're all guessing about how we read and are read.
WCD
Liz,
The title of the post, and ultimately the raw writing, was compelling. I continue to be surprised at how often our subjective experience of travel with a disability is still treated as "inscrutable" by many non-disabled folk.
I do most of my work on disability for the travel & hospitality industry outside the US. This issue of personal space and physical contact is so central to our experience as wheelchair users in America that I was surprised by how completely the priorities are reversed within our community in India. There being accompanied by helpers in public is status enhancing. By musing on the gender, racial, and class dynamics of your experience you have created a tool I can pass along to travel professionals in places where the status markers may be similarly reversed in order to open up the American experience to them.
Thank you for writing this.
Scott Rains
www.RollingRains.com
Hi Scott, I'm glad the post is useful to you. I like your point about touching and personal space. Touching by strangers is, in the U.S., a big issue. Who feels they have the right to touch whom? Why do they do it? I think it is a dominance and power move. Men touch women without permission or consent, everyone touches children, white women go around trying to touch black women's hair, and if you are disabled it's like open season on the head-patting, shoulder grabbing, and hand on thigh (not to mention leaning on wheelchairs, which I perceive as insanely rude.)
So, for example, at the end of one of my flights this last trip, I chatted a bit with the woman next to me and her husband. Keep in mind that even if I do have hair like a Muppet, I'm a 40 year old woman on a business trip, wearing a suit. We chatted about their trip, their children, and the view out the window in a polite, not intimate way as the plane landed. I moved aside for them to get off the plane. As they passed me, the man reached out and *patted my head* as if I was a dog. This is very clearly not the behavior of adult strangers to each other. I gasped and went, DID YOU JUST... pat me on the head? The couple walked on. The flight attendant nearby did not understand why I was taken aback. "He was just being friendly," she explained to me.
I think many other people in wheelchairs have experienced this. I can hear your point about cultural differences, disability, and helping, and I got that idea in China to some degree, but the power dynamic was quite similar.
Often, I just ask people, "Why did you just touch me? Why did you think that was okay?" and it at least makes them think.
Liz,
Grrr, when they treat us like a pet it makes my "bad dog" response get up on its hind legs!
A piece of my comment that I deleted for space reasons was that my reflection in India was actually prompted by pushback I was getting during the day-long workshops for travel agents, tour guides, airline staff, hotel management, etc. when telling stories about actual experiences of mine similar to your own. Trying to get across the experience of wheelchair-as-body-part falling within the "don't touch without asking" zone was particularly difficult -- but so essential that we kept reasserting it from as many angles as we could think of. When I got back to the US I tried to make the point in yet a different way for a piece that will show up in the Jan/Feb 2009 issue of Venture magazine.
Whether they came to understand or accept it or not, it was the skill set they absolutely needed to learn if they want to attract Americans with disabilities as tourists. Fortunately, they do want us and some incredible progress is being made right now (on the physical accessibility side at least.)The cultural work is one we've now engaged Indian DPOs in for the long haul. Ability Foundation in Chennai is running a feature article in Inclusive Tourism in this issue. The Indian Institute of Technology New Dehli has devoted its upcoming journal on Universal Design to the inclusion and tourism.
We may not be feeling the result on the ground yet but a change is in the air.
Scott pointed me to your blog and I grimaced in recognition. I travel often - in planes, on the bus, and on the train in the UK.
I have been called the wheelchair so often, I am immune to it now - how sad is that! Imagine if you have multiple identities! I am also Malaysian Chinese.
Actually I find that American Airlines are quite courteous in comparison to some European airlines, at Nice (Southern France) Airport, I was once told by a male staff getting me off the plane, that I should be grateful that there are people like him to help me. I was so incensed I nearly told him that maybe if it weren't for people 'like me' he would be unemployable or something of that ilk. I held back my tongue because I was alone and did not want to be caught in an argument when I was in a vulnerable position.
In another instance, this time in UK, on a train when a guard told me off that - I should have given more notice so that staff could have more time to 'help' me, I stood my ground. I told him I wanted his name and that if he had any problems getting me on a train (he needs to get the ramp out), he should complain to his manager but not lecture me. I was a customer and he had no right to harangue me. To cut the story short (he's been respectful since then), I find people have this ingrained notion that disabled people are to be 'helped' - never mind that we pay for that privilege, non disabled people feel they are superior and therefore, embolden to pet us one the head. Yes, being a woman as well doesn't help.
To go back to Scott's point, being white always change the dynamics. The first time I went to China, I was petrified, I did not know what the reactions/ attitudes would be from people of my race - I know what I could expect. But because I was accompanied by 3 white people, the stigma of disability did not rear its head. I think by association with the western world, they assume that I have many advantages (money, education) that somehow I am not in the same 'class' as the Chinese disabled.
I have not really thought of what I make of all this - just rambling but it would be interesting to investigate the juxtapositions of race, money, gender with disability and different attitudes in different cultures and parts of the world.
eleanor
ewheeling.over- blog.com
Fantastic post, and so thoroughly true. I really like your writing style and attitude, and will be back to see more of your blog.
So I was browsing through your posts to see what I should comment on for this HP Contest and was taken aback a bit by the Wheelchair at the airport post. "She's in a wheelchair?" All I saw in my first glances at the profile pic was the purple hair! (Love it BTW - my fav color). It sucks that anyone of disability, color, or any "difference" is treated in this manner by anyone in the world. Especially in the USA. What are we, living in the middle ages? Didn't we just elect a black president?
While I live a relatively "normal" life, I'm constantly amazed at the stares, questions, and "look past him" remarks my husband and I get when out and about. You see, I'm as white as they come (Scottish heritage and all) and he's from Ghana. (That's in West Africa for those who don't know!) That means he's as black as they come. Oh, and don't forget his dreadlocks. http://tinyurl.com/5bqbuk Here in the middle of Colorado, people still look at us funny when we go to dinner. They can't understand his thick accent and look to me for a translation. They think he's a bit scary looking until they see me there too. Of course, it goes both ways - I've never gotten so many "What the H***?!?" looks as I do when wandering into the African grocery by myself. LOL I love their double takes.
So for this HP Giveaway, while I will keep one of the laptops for myself to help grow my own business (http://www.creativeassistants.com), I promise that the rest of the equipment will go to a school (or perhaps 2) in Colorado Springs, CO that promotes diversity in education. I apologize I don't have the name or link of the school right now - a friend who works there is out of town right now and I need to confirm it with her. I want to give the computers and equipment and software to a charter or alternative school that serves those who have fewer opportunities than I did growing up. In today's world, every child needs access to a computer and the Internet.
I will post a link to my Twitter account (www.twitter.com/copong) as well as my blog (http://creativeassistants.blogspot.com) shortly!
*sorry, I'm reposting this to leave a link to my blog- http://ibabble.net*
This post really resonated with me- not because I have a disability myself, but because my college roommate (and best friend) does. C is legally blind. While she can see a tiny bit, the only way for her to 'clearly' read text is for her to hold the paper/sign 2 inches from her face. I've been with her as people noticed how she held the paper they just handed her, the typical responses were something outrageous like "aww it's so cute how you read"! As if she would want them to comment on her blindness at all, let alone tell her that her disability makes her 'cute.'
I've also been with her as she's confronted professors that needed to make adjustments in how they present material to her... and I've been there as she explained, time and time again, that no, she really didn't need them to just write bigger, or, no, she doesn't need your assistance getting down the stairs she goes up and down everyday. People think/thought that they were helping, when all they ended up doing was making her feel bad about herself.
She's a very self-conscious person, and people pointing out what they think she should not do just made things worse. Like you, she values her independence. She has plans to move to NYC because there she can rely on subways and taxis and not have to hear the inevitable sighs when she asks someone (yet again) to take her someplace. Well, of course, on a NY subway I imagine she'll have other things to deal with... she's trading the sighs for sometimes creepy and disturbing people (from the stories I've heard) but she'll have what she values most-- her freedom to go anywhere at anytime.
Through C I've learned (and am still learning) how to deal with certain situations. Much like your positive scenarios with the flight attendant/gate agents, C and I are always engaging in back-and-forth discussions. For example:
C: Want to go (across campus)?
Me: Yea sure, its getting dark (her vision is obviously even more obscured at night) do you want to take the stairs or cut across the grass?
C: Let's cut across but you go first that way if you fall I'll hear you yell and know not to step there. *or* The stairs- walk beside me so I know when you shrink that the steps started.
A lot of things I've picked up on just from living with her for 3+ years, and I'm thankful for her friendship in a lot of ways. She's opened my eyes more to some of the difficulties people face in taks I used to take for granted. She's made me a better person (at least, I'd like to think so) and she has hopefully made me a better teacher- I plan to get my teaching certificate in the next couple of years, and I'm going to also get my special education cert so I can continue to learn how to be a better person (and hopefully help some children obviously). I certainly want a hand in training some kids not to be ignorant morons like the ones you've encountered...
And for how I'd share the magic? My mom (a VERY small business owner) could use a computer, my best friend in Australia lost his computer 7 months ago and has been unable to buy even a $300 refurbished, my sister just started college (and became Editor of her paper!) so she could use the mini... so many people I know (including my family) make less Per Year than this contest's value. Scary, but true. I have no shortage on the amount of people that would benefit from some magic.
Your post was so compelling and thought provoking, and yet believably true as it happens all too often. “..Cry me a river... A lot of people with disabilities have to put up with that shit all the time, every day, and tolerate all sorts of things, because they have to, to survive.” As a nurse, it amazes me to see that many people-- are quite ignorant and indifferent & unable and unwilling to discern a person’s level of ability. Some take-charge-of-the-situation-folks are assuming and condescending, struggling to maintain power because it eludes them in another area of their life. And well—we know what happens : ASS-U-ME. Enduring an episode of dehumanizing behavior, followed by a deluge of onlookers sympathetic looks & remarks---makes a person feel really small and helpless. I can only imagine the rage you felt when you struggled with the gate agent—a real physical & mental altercation. A similar situation happened to my daughter who is autistic. Loud unexpected noises, eye contact, bright lights, unintended physical contact (like a harried person bumping into her) have sent her over the edge-its over stimulation. She wants to lead a “normal” life without having a scarlet letter “D” for disability hindering the progress she has worked so hard to attain. I really applaud your bravado and thank you for sharing your true emotions.
Thanks for hosting a great contest as well. I would love to win a computer for myself as we have one old, rickety desktop for a family of 7. I am actively pursuing a Bachelors degree in Nursing @ Indiana State University (online), and a laptop would be more than ideal.
I would love to gift a computer to my daughter who is working diligently in establishing independent functionality as a young adult autistic. I would also love to gift a needy family through the Endependence Center (http://www.endependence.org/) a wonderful, local organization that has been instrumental in providing transitional services for my daughter and many other families. Lastly, I would love to gift a computer to a co-worker & friend who is a struggling, single Mom. She and I have promised to see each other through acquiring our degrees together and this would be a blessed gift.
I had brain surgery a year ago and encountered similar compassion from airline attendants. You managed to relay your experience with far fewer curse words than I'll ever be able to.
My experience was less than 4 weeks after my surgery, my incision had not yet healed all the way and all I needed was a window seat because, hello, could not hold my head up for a 5 hour flight. So I approached the front desk (foolishly optimistically), and asked if I could switch seats. While he was looking, I set my head in my hands (to rest my neck) to which the man goes, "what, am I boring you?" to which my head EXPLODED.
I very calmly explained that I'd had surgery less than a month before and COULD NOT HOLD MY HEAD UP, which was why I wanted to change seats in the first place. GAH.
So while I haven't been exactly where you've been, I can appreciate the frustration of dealing with incompetent people who make unfair assumptions.
I am interested in the HP contest, so here are my 3 sentences of how I'll share the magic:
I live in New Orleans and a co-worker of mine's house, particularly her roof, was damaged in Katrina and due to financial constraints has not yet been repaired. Since that time her husband has suffered a series of strokes and last week, at the age of 55 he had to be put in a nursing home and she and her son had to move in with someone else, due to lack of funds. If I won the contest, I'd give virtually all of it to my co-worker and her son, who is a developmentally delayed high school boy.
I'm going to go twitter about the contest, and go to bed knowing that I've done all I can (at this point) to help someone else. I hope that the winner of the contest does something fantastic with the prizes.
To be honest I was searching through the blog to find a post to comment in order to enter the hp giveaway. Being highly sensitive on human rights and the way people treat people, I immediately started reading this post.
Written in so personal tone it gave me an idea of how people with disability are treated. How the whole society made each one of us believe that those people different from us are inferior or need *special* care.
In my country I’m a member of a left party. Day by day I fight for the basic human rights, for the right to be different. I work along with persons with various disabilities, to organize events, leaflets, protests, in order for the whole world to understand that everyone in equal through his/her difference.
I get angry when someone is blocking a crossing in the street, I get angry when someone is giving a *sympathizing* look to a person with a disability, I get angry when people hit immigrants, I get angry when people think homosexuality isn’t *normal*, I get angry when every man or women isn’t treated as EQUAL.
For me this particular example on the airport extends on various levels, throughout the society. And I think that the solution is inside all of us. We should try together to reverse the situation and not wait for to be fixed by others. We should take action now and stop the discrimination of other people by changing first ourselves.
In the end I’ll keep shouting till all the air is out of my lungs for a better place for every man and woman.
Here is my 3 sentences of how I'll share the magic:
My mom is a director in a primary school which main goal is to have all children, with or without disability, in the same classes and not be send to *special* schools. So if I win, and knowing that most of their computer staff isn’t very new, I’ll give them most of them. I’ll keep only one laptop and maybe the printer.
A site from a Greek NGO managed by people with severe disabilities http://www.disabled.gr/lib/?page_id=5772
This is a great blog post. It saddens me that some people can be soo rude.. especially at the airport and they try to treat you especially mean if you have any sort of disability that throws you off from being what they consider a normal passenger!
I will fly for the first time on the 21st of December with my husband and baby girl (3 months old by then). I'm terrified! I also need a seat as close as possible to the bathroom for my Crohn's Disease (unfortunately I have the sh!t disease, you can laugh about it I guess, LOL) and to make my daughter formula if that is even allowed these days! Yeah my babies bottle is a bomb I'm going to take down everyone.. seriously airlines are very stressful!
I'm going to see if I can someone how subscribe to your blog hopefully via email! :)
There's a piece coming into focus for me recently about parallels between transfolks and people using visible assistive tech that's sharpening up, in focus. Especially after reading this. Particularly, I think, it terms of how to think about 'best practices' developed within each group to the benefit of both/all.
I hopped here from Sarah Dopp's link to your HP Magic contest, and will still enter, but I actually think I have to go write something else now, while my brain is switched to the right station. More later, I expect.
There's a piece coming into focus for me recently about parallels between transfolks and people using visible assistive tech that's sharpening up, in focus. Especially after reading this. Particularly, I think, it terms of how to think about 'best practices' developed within each group to the benefit of both/all.
I hopped here from Sarah Dopp's link to your HP Magic contest, and will still enter, but I actually think I have to go write something else now, while my brain is switched to the right station. More later, I expect.
I wish more people would read your post. I don't travel by air or very far for that matter, but apparently, similarly trained or ignorant dolts exist in more than just airports. My wheels are on the bottom of my walker. Occasionally I do need assistance, but my voice is loud and clear, and I know how to use it.
Wouldn't it be a wonderful world, if people just listened. An offer of assistance isn't a bad thing in itself, but when my response is ignored or the offer is more of an insistance, then the proferred help is not only dehumanizing, but infuriating. At that moment, I briefly wish they could be in my place for just one day. I guess it's a good thing that I don't have any magic powers.
For the HP Magic Giveaway contest, 2 of the computers would be used by Ray and I, as we are both physically challenged and so are our old, slow PCs. I would like to sponsor a similar contest on my blog, to give away the remaining computers, so that they will make a difference too and have our old pcs refurbished to be given away. My blog is Beverly's Yarn Crazy at http://beverlysyarncrazy.blogspot.com
This was wonderfully written. More power to you! It can be infuriating. My mother is disabled, and she has had similar situations at airports while traveling. it's outrageous and unacceptable. It brings to mind the horrible misguided "deaf dumb and blind" tag society has often used with it's rose-tinted glasses. A disability does NOT make a person helpless. Working in an airport DOES make for better education and training when it comes to people-skills and working to help assist disabled travelers if and when they need it. I wish you much luck in your future travels and hope that next time you are dealing with competent individuals.
Best,
Amber
My brother-in-law suffered from water surrounding his brain when he was born. Due to this, he has several disabilities. He will turn 30 tomorrow.
He is incredibly intelligent, caring, and kind. He has poor motor skills. Zipping his pants is difficult, tying his shoes is impossible for him, and he has a medicine cabinet full of pills for seizures and anxiety. With all of this in his lap, he is the most amazing person that I have ever met.
One thing that truly hurts is hearing him talk about being lonely. He wants more than anything to be married, to have children; simply to love. Yet due to his disabilities it has been hard for him to find someone.
He recently started attending a group in hopes of meeting someone. The group meets regularly and contains a number of other people with similar disabilities. He reports often on the people he encounters. Rightfully bitching about how the men and women are separated into same sex groups with limited interactions. Men and Women are rarely, if ever, allowed to conversate. Heaven forbid the make friends.
While he enjoys socializing in the groups, he is beyond pissed that they have him participate in what I can only call craft hour. Forcing him to make construction paper turkeys, clay pumpkins or some other holiday themed child craft bullshit. He is humiliated that they treat him like a child due to his disability.
It's insulting. Making a grown-ass man take part in craft hour simply because he suffers from certain disabilities. Them assuming that because he has trouble zipping his pants, he must be child like. He doesn't want to make a stupid pipe cleaner turkey. I'm half tempted to drive up there and shove the crafty memorabilia up the asses of his instructors. But I don't.
Craft hour aside, he participates in the group, because bullshit turkeys or not, he still wants to meet someone. He still hopes that going three days a week will bring love into his life. And that alone is so goddamn beautiful that no one else complains.
He endures the forced infantilization of craft making so that he can meet someone, so that he can love someone. He is stronger than I could ever be; if only they could understand. But small things, tiny gestures like untied shoes and slightly dirty face shield them from his reality.
This was beautifully written and should be out there for all to read. My husband is a disabled veteran and people look at me and talk when they should be talking with him, he is a human and not a package with me. Thankyou so much, I have asked so many workers, airports, hospitals- am I the patient- if no then talk to him- he is not a corpse yet so talk to him he has a tongue. I guess in reality he is the calm cool one becuase I go off the handle and really have no patience and wish them all the crap they have dealt others.
If I won, I would give my son the laptop because being a disabled veteran is not a profitable thing in life and this is one thing we cannot afford to gift our child with that he actually needs for college. I would contact our local agency and find a family/individual who actually needs a computer to work from home to make a living because it is too hard to get outside or work outside the home because of the disabilty, or for someone who needs one that wants it to communicate with his family that because of budgets and expenses these days traveling is just not possible, so they could have the communication via webcam with family and friends and not feel so isolated.
Click on my link and will have you posted very soon- I have found your site a wealth of laughs and information.
This is really an eye opener.
It just showed me how selfcentered I am.
Thanks, this really helped me, although I don't have the writing skill to express it properly.
Honey, I know exactly how you feel. Not because I am also disable, but because I am an international student from China. So don't cry like baby, this is life...
Half year ago, I bought a round-trip ticket from Continent Airline. It was an electronic ticket, so I didn't receive the actually "ticket" until I got to the Beijing Airport. However later when I tried to refund the ticket (you know I only used half of my round-trip ticket), they said NO...You know why? Because when I bought the ticket no one told me it's non-refundable...Trust me NO ONE!!!!!!!!!!!!!!!
Then after I landed in NY airport, the officer which is really handsome (so handsome that I began to doubt his IQ) forgot to put "Prospective Student" on my passport after read my admission letter from IUB...This directly cause the denial of my student status switching. (The denial decision made by USCIS in 10 seconds and cost 400 dollars).
And I hired a lawyer which is as greedy as mosquito, flea or...you know. I spent 1000+ for the motion and finally I got my student status but it was 4 months late of my school.
No, no, no, no, this is not the end, the other day I got the bill from the lawyer, it listed more than 2000 dollars for the service I didn't request---illegal present. When I asked the lawyer why, he said that's the follow-up of my case and he didn't even know my request was granted by USCIS after I received the notification 1 month later...(He should be noticed first.)
Is it funny? Now I know why the economic is so bad---NO ONE CARES.
Liz Henry, my darling, when you are tired of life in US, just tell the immigration department that you are Chinese, trust me they will not check and directly offer you a "free" trip to China. Since they treat us the same.
www.myspace.com/billchenxi
Oh, I came here for the HP contest.
"I am an international student from China. This is such a nice prize package to win and I plan on sharing it with a friend. I will give away 2 computers and a printer to 2 friends. One is my host, the other is a lady who is 40+. Because she can do his online school whenever time allows. As for the DVD I will give to the people from my church."
Xi Chen
Clarksville, IN
47129 USA
This is so true. I see how they treat people on wheelchairs it's like you are a liability to society, and not even a human being. It sickens me to see how low people can be. I feel for you I really do.
Arnold
Regarding the HP contest in 3 words or less him... ok :D
Firstly I would donate the HP Touchsmart PC to the Alpha Center its a school for mentally challenged children.
Secondly I would donate the other hardware such as the printers to the local hospital, along with the DVD.
Thirdly I would also giveaway the remaining laptops to schools and libraries, as for me all I require is the HP HDX.
Link to an article with the Alpha Center
http://www.travellingaid.nl/english/dominca.htm
Link to my blog http://a00r.blogspot.com/
Your ‘descent into the underworld” was very vivid and eye-opening.
People (with such indolence and unawareness) have to be picked up and shaken (sort of speak). Something has to startle them into action and I believe that force might just be you.
I have no doubt that your vision of human decency and manners will become reality someday. :)
As self-appointed Patriarch, I will share the magic with my family. They deserve some nice things that I cannot give them.
My website http://www.angelfire.com/fl/maxcomf/
blog
http://scentofapooka.blogspot.com
I left this at another place on your Blog, so please forgive the double post -- but I'm not sure where you wanted it for the contest entry.
Grrr, don't you hate it when you type a long remark, copy it so you can migrate to another page and then accidentally copy something else (thus losing the first one)?
Rats.
OK, 2nd try. Your comments about disabled travel took me back many years to travel with my mom. Mom was quite a character and she loved to gamble. We flew to Las Vegas and our experience was a lot better than yours. She was able to drive her electric wheelchair to the gangplank. When we got to Vegas the chair was waiting as soon as we got off the plane.
The only complaint we had was having to call ahead for handicap cabs -- the waits always took forever. But everyone was helpful, and we'd even plug in her chair at the casino to recharge it! Mom was a hoot.
We took that chair (courtesy of the lift on my car) all over the country -- North Carolina, Washington DC and Vermont. That chair gave her freedom and I'm grateful for the memories and her happiness.
Well, I am rattling on. My son has disabilities, but they aren't visible to the naked eye. I see far worse prejudice against him because he isn't so easily identifiable as having special needs. As a result he gets "picked on" by some kids for accommodations at school. The good news is that he has loads of friends and they stick up for him.
Your blog is funny, touching and educational -- thanks for letting me know about it. I'm keeping my fingers crossed on the giveaway. What a lot of fun you'll have choosing the right person!
IF I win my son would get one computer. He really needs one (he has a garage sale $20 computer I bought 2 years ago). Donating the second one would be a blast -- I'd call the school and ask the guidance counselor to recommend a kid who really needs one and can't afford it -- and donate it secretly through the school.
You asked for a link. My blog is at eisenberg.wordpress.com/ .
I am appauled but not really suprised by your treatment. I have had some pretty horrendous experiences with US Air myself. I was in the intensive care unit of the hospital and had to post pone my return hme on my round trip ticket and was forced to buy a new ticket. I even wrote their complaints department to no avail so I doubt that they will ever change! They seem to be the insensitive airline!
Yes, this should TOTALLY be required reading for public transportation staff. You're amazing Liz.
Ok I spit my drink out reading this.. *shoots fuck off rays in every direction* I loved that line.
I have a couple relatives who work for the airlines and let me just say they need a lesson in disability rights.
I'm often one of the people throwing knowing and sympathetic looks at disabled people in airports when I see them being treated not as differently-abled but simply as unable or as children. I'm not black, nor am I a man. So how could I possibly throw someone an "I've been there" look when thy have to deal with insensitive morons at the airport (or any place else)? Well, I'm foreign. English is my second language, so I have an accent.
I came to the U.S. as an exchange student in 2001. The first experience I vividly remember from this country was my first domestic flight--getting from the international airport to the regional airport where I was to meet my host family. I was sitting in an exit row and the flight attendant decided to make sure all of us sitting in that row knew what our responsibilities would be in an emergency. He was a very large man with a thick southern accent... I was taught British English in school and that was the pronunciation I was used to; I had never heard a thick southern accent before. I could not understand a word he was saying.
I politely asked him to please repeat (in an accented British pronunciation). He, apparently irritated, spat out what he'd memorized once again, much louder, and even faster this time. It was obvious he was asking me a question by his inflection but I couldn't understand him for the life of me. After I'd asked him to repeat a second time, he started shouting at me. Suddenly, there was this huge, really intimidating guy leaning in (I was in the aisle seat), obviously angry and shouting something--all I picked up was "speak English" and "stupid."
At this point, the man sitting in the window seat next to me got up and leaned over me right in the attendant's face and told him to back off. He then sat down, turned to me, quietly told me in two sentences that I was in an exit row and I might need to help in case of emergency, was I OK with that and could I follow instructions in English? Almost in tears, trying to block out the angry fat man behind me, I said, "Not from him."
It was a humiliating experience, and only the first of many many more incidents to come when I'd be treated as if I were clearly mentally challenged, Deaf, or a four-year-old (or all three). You'd think it's mostly uneducated folk who've never been anywhere who make these assumptions but it's not. The last time this happened was just last week. A nurse had trouble with my name and asked me where I was from originally. When I replied (with an accent), she thought long and hard, then said VERY LOUDLY and v e r y s l o w l y "Welcome to America!" I just wanted to kill her right there and then. Good thing I'm a wannabe Buddhist. I think she probably meant well but that was just about the most offensive thing she could have possibly done.
For all my knowing sympathetic looks, though, I can't claim to ever even begin to understand what you have to endure as a person with a disability or how you must feel when you run into someone who can't seem to see beyond the wheelchair (though, honestly, it's hard for me to imagine how someone could do that--like Cindy above, I didn't notice the wheels at all, I saw your beautiful purple hair :)).
I initially came here for the HP Magic contest. I don't need the prize--I would have given it away--nor do I deserve it. However, I would like to enter anyway. If you pick me, I'd appreciate it if you could choose a few readers for whom some part of this prize can make a real difference. It's nice to make one person's holidays magical; it's so much nicer to share :).
It is definetly a lack of training but also a lack of all shred of COMMON SENSE! I am hard of hearing and wear hearing aids. I read lips and speak fine but the moment I tell airpor/bus/train station staff they become anxious and stupid. What makes people think that ? can understand over enunciated extra loud words? Then when I tell them to speak normally but clearly and I can understand they become snarky and put off. I love your use of humor to paint a picture of how insensitive many people can be. Thanks!
CJC
I really enjoyed this post as I have experienced these things you speak of more than once. This is an article that should really be submitted to all travel staff to include rail. I teach a class about disability etiquette and it's sad we need such classes but we do. Thanks so much for such a wonderful article and daring to always speak the truth.
Sarah
http://thethinkingtank2.blogspot.com/
cant believe people are like this. why dont we see people for who they really are deep inside. im glad that others are able to cut some slack for those whoare too blind to reallysee
Thank you for posting such an eye-opener. It really is a shame that the general public isn't more educated about all different walks of life. I dream of the day where humanity accepts each other as individuals that each have a lot to offer and respect that those offerings do not come in the same form. It's so frustrating to see all the rude, thoughtless actions that are exhibited by people everyday. I hope that in both our lifetimes, we can come to educate the public about generosity and understanding. Goodness knows that we are all people who want that in return.
I would share the magic of Kung Fu Panda with one of the foster kids on my caseload. I would keep the Premium Notebook and the Touch Smart to update my husband and my own failing computers so that he can continue his graphic design dream. I would gift everything else to schools that could really benefit in sharing the technology with their students.
Thank you for sharing in the holiday spirit!
Breanna
http://edensbirthmomma.livejournal.com/
I wonder what type of training if any that those in the airline industry go through for disabled passengers.
I was once on a flight where an flight attendent yelled at a man in front of me to move out of an aisle that didn't have enough oxygen masks because the couple that were also in the aisle had their kids in their laps.
She yelled at him to get up and move to another aisle and when he didn't get up right away she started making an even bigger scene until his friend mentioned that the man is paraplegic.
Instead of moving the family, his friend had to carry him into a different aisle all while the flight attendant stood there staring at them.
Ugh, it makes me so mad!
Since the new airline rules have taken effect I've been told that my insulin needs to be checked, I've been told that I should have brought ALL the original packaging for my insulin, I've been stopped where they have to double and then triple check to see if my insulin is mine.
There has to be an easier way!
Liz, once again, you grab attention and make your point in a style that's uniquely yours.
How can we help change things? Send Liz's article to the customer care offices of the airlines you travel. If you're a frequent flyer, use the address that they send you and share it with others.
If you have an address and not just a 'contact us' form, send the full article along with the link. Some may not bother to click a URL, but if they start reading, they'll be hooked, too.
Hello, We are thinking about travelling to Budapest - wife with T4/5 complete injury, a 2 and a 5 yr old child, husband. Do you remember a good hotel that has roll in shower, shower/toilet chair? You can read about some of our experiences on jitkavirag.com .
happy new year!
jitka and jani
In a (censored) word, sheesh.
I quit flying USAir many years ago after a similarly horrific trip, where they also refused to pre-board me or swap my seat on a nearly-full flight. Aisle chair + crowded late plane = many unhappy people.
In recent years, however, I have to say my flights have been almost exclusively models of your first examples, even in the airports where the managers don't run away if their secretary announces who's calling. Mind sharing which airport(s) offend so I can be prepared to defend my person instead of merely dropping my jaw in shock?
Liz...that was an EPIC post. Yes, I am very, very late to this party, but I had to comment. I have a very short attention span (meds!) and thus cannot get into blogs beyond the first 5 words usually, and you had me to the very end!
Totally agree with your experience with black men. I have had the same thought and once another friend in a chair said the same thing to me. Very often, they seem to get it in a way that most other people don't.
Just followed you on Twitter. :o)
"I feel lucky no one came to arrest me for assault."
But aren't they by definition assaulting you by grabbing you without your permission (especially after being told not to)?
Perhaps "please don't assault me!" would be effective in stopping them in their tracks. Hopefully I'm not being overly optimistic, but my guess is that it would cause them to pause in shock at least, and hopefully reflect on their actions later.
When my friend Sue is going through a crowd someone may say "make way, wheelchair coming through". Sue says "can I come too?". lol
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