Thanks for the help

While I have plenty to say about my minor difficulties as a disabled person with parking spaces, being stepped on in crowds, and dehumanized at airports, I’d like to mention a super nice interaction I had with a woman at the grocery store the other day. I had stopped off on my way to work and walked from my car into Trader Joe’s with two canes. Someone else was using the motorized scooter, so I sat on a ledge and waited. My options were:

* wait for the scooter user to be done
* just leave and go to work without lunch
* walk to the back of the store to get my salad and fruit and back and wait in line standing up
* go back to my car and get out my wheelchair and wheel through the store to shop

I am lucky to have that variety of options, obviously!

Walking means pain in my knees and back and leg, and exhaustion, but getting out the wheelchair is also tiring as well as being hard on my hands which lately are in a lot of pain too. So I figured I’d sit for a minute or two and if the scooter user was taking too much time, I’d leave and go to work. Both walking the length of the store and getting out the chair once I was already in the store weren’t worth it. “It” being the price of arriving at work at 9am already wishing to go back home to bed and take painkiller and cry.

As I sat there a nearby checkout clerk, a lady maybe 60 years old, came over to ask me if I was waiting for the scooter. I said I was and didn’t mind waiting and was fine. But she offered to get me the groceries I wanted. “You can just tell me a list, or I can write it down.” The store wasn’t busy, and it would be no trouble for her to do. I was incredulous. While all that was true, her fundamental niceness in bothering to notice I was in (minor) difficulty that she could easily alleviate — well it amazed me. That almost never happens, even with friends, coworkers, and acquaintances.

I’m not shy about asking for help, though I don’t much like doing it. The thing is, I already have to ask for help enough. And I enjoy being able to do things. I’ve had enough moments of having to ration out my requests for help into asking for water, food, and help to get to the bathroom. Now I’m up and around and don’t have to do that. But… If it isn’t crucial, I don’t want to ask. I would rather be a little frustrated and continue to feel independent. Both because I don’t want to try the patience of able bodied people around me, as if they are a bank or participants in a zero-sum game, and I shouldn’t *use them up*. Even if I won’t need anything major from a clerk in the grocery store, a stranger, or a friend, I think of them as a resource with finite patience and attention not only for me but for whoever the next person who asks for help might be. The other component is certainly my pride. Am I going to ask a nearby stranger or a barista to bring my coffee to a cafe table when I’m on two crutches and can’t carry it? That depends on a complicated internal equation of pain, ability, and pride. I can usually manage it okay on one cane or none, but sometimes “can do it” is tangled with “will hurt, unnecessarily”. I understand on many levels that “independence” is a lie for all of us – for all people. None of us are independent. Dependence, and help, and asking; everyone has to do that, whatever the style of it and whether it is backed with money (as it is every time you pay someone to do something for you.) But I fight it hard on little things sometimes. It’s complicated and weird and I process it internally, a lot. Even when I ask for help, I have a hard time accepting the help. I prickle up like a cactus. I don’t want to be in any situational pattern where someone has power over me.

With that sort of thinking as my background, I said yes with some embarrassment and diffidence to the nice Trader Joe’s clerk. I was actually kind of stunned and going “Are you sure? That’s okay? Because it’s okay really.” She was determined to help out and not gross or weird about it. I asked her for a salad and some packets of dried seaweed. If it had been a whole grocery store list, I just wouldn’t have been able to ask it of her even with her kind offer.

She got me my lunch, rang it all up, and brought the bag out to the car for me. Outside she said that her brother had polio so she understood it might be hard to walk across the store. She looked at my wheelchair there in the front seat and asked if I was going to work. She assumed I had a job… she didn’t act like it was weird I had a car. All very rare. She must be a good ally to her brother.

Disability aside, people are usually a bit extra judgey because I’m a little scruffy and have purple hair so they assume I am kind of a privileged brat (and they’re right on that count) and/or some kind of drug addict teenager (I’m 41, and not, but even if I were, would still be disabled and in need of help sometimes) and thus not worthy or deserving of help.

walking in to pick up milo at camp

I drove to work actually crying… I know, first world moments and all… A bit ridiculous.

I was driving away wishing that as that lady in the Trader Joe’s gets older that other people are as considerate of her in small unnecessary moments as of course I also hope they are in the larger and necessary ones in her life. Since I have no way to guarantee that, I guess I’ll always try to get into her line at the store and say hello, will look at her nametag, and will figure out how to contact the store management to say an anonymous thank you.

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I am not The Wheelchair: Air travel and disability

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.

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How not to be a Generic Politician

I just got this email from my senator. Talk about Generic-Off. How pathetic. Could the Senator’s office at least go to the effort of having *different templates on different issues*?

Or even some actual information content in the email?

Like “Ms. Henry, we have noted your concern on the Iraq War, and would like to let you know that X percent of Californias agree with you. Here is Boxer’s position on the issue, and here is how she plans to vote.”

What earthly use is this to me? I’ll be damned if I can remember what I wrote a letter about, or what petition I signed, in this case. Behold!!!

Dear Ms. Henry:

Thank you for contacting my office to express your views. I believe that all citizens should become involved in the legislative process by letting their voices be heard, and I appreciate the time and effort that you took to share your thoughts with me.

One of the most important aspects of my job is keeping informed about the views of my constituents, and I welcome your comments so that I may continue to represent California to the best of my ability. Should I have the opportunity to consider legislation on this or similar issues, I will keep your views in mind.

For additional information about my activities in the U.S. Senate, please visit my website, http://boxer.senate.gov. From this site, you can access statements and press releases that I have issued about current events and pending legislation, request copies of legislation and government reports, and receive detailed information about the many services that I am privileged to provide for my constituents. You may also wish to visit http://thomas.loc.gov to track current and past legislation.

Again, thank you for taking the time to share your thoughts with me. I appreciate hearing from you.

Barbara Boxer
United States Senator

How hard could it be to hire someone to write you some decent “issue tracking” and letter writing software to keep your constituents informed without sounding like a mealy-mouthed robot talking to another, much stupider robot?

Meanwhile you might like to be aware that watchdog.net is useful, maybe more like what I’m looking for as a constituent than a flail -n- trawl through the entire Library of Congress.

Obviously I still end up voting for Boxer no matter what, but isn’t the idea to make me *really, really, really* support the politicians in office? Maybe even donate to them, because they’re awesome?

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Pissed off cyborg in your face


New!
Originally uploaded by cdent

If this round of wheelchair use keeps for for much longer, then finally everyone in the known universe will have gone through their awkward reactions and I can stop having the most annoying boring conversation ever.

Here is something I wrote for WisCon. If only I could have forced all 1037 people there to read it.

A quick lesson in wheelchair manners:

1) Please ask before touching!
2) That goes for pushing the chair especially.
3) My lap is not your shelf.
4) I’ll ask if I need direct help.
5) “Would you like help” is fine, good manners; “Here let me do that for you” while doing it already — is not. I value my abilities.
6) Walking beside me is nicer than walking behind me; then I can see you.
7) Coming down to my level for conversation is extra polite, thanks! Looming over me especially from behind… not so much.
8) Think of the chair as an extension of my body or personal space, treat it as such.
9) Thanks for unblocking my path so I don’t get trapped, much appreciated. Move your backpack out of the aisle.
10) Really, please don’t move the chair! I wouldn’t pick you up and move you, would I?
11) Please don’t bump it either, it’s annoying and often it hurts me.
12) Let’s talk about science fiction and feminism instead of wheelchairs and disability and pain, once we get past introductory chit chat.
13) No I don’t really want to listen to your process your feelings and fears about disability unless we’re already friends.
14) No I don’t want your medical advice unless I ask for it.
15) If I ran over your toes, my bad, I’m so sorry
16) I’m not here to satisfy the whims of your curiosity. Why do you need to know? Why do you want to know? Could you possibly put off finding out till you know me better?

Clip and save!

Because that was the polite part. Here is the rude angry in your face part:

What ‘s wrong with you? Why are you in the chair? Oh my god WHAT HAPPENED TO YOU? Is this temporary? Is this permanent? Did you break your leg? Did you go to the doctor? Did you get an MRI? What exactly is wrong? You sure get around well, how did you learn? When will you be out of the chair? Are you sure? I’m so sorry! Are you in pain? Are you going to die? You sure look comfortable. Wow lucky you, you get to sit down while we’re all standing in line. OMG are you OKAY?

(Answers: Nothing, what the hell is wrong with YOU? So that I can get around. I was born and then grew up, what happened to you? I don’t know. I don’t know. No, but I can tell you really really really want me to have broken my leg. What do you think, do you think I went to a doctor, but that’s not what you’re asking, you’re asking what my prognosis is. Do you want to help diagnose me? I don’t know but I have some possibilities which we could discuss exhaustively OR we could have some other more interesting conversation. I learned last time I was crippled which was around 93-98 with varying degrees of disability, oh that surprises you, check your assumptions at the door; oh by the way you seem to get around really well for someone with their head up their own ass. I don’t know. I don’t know. I’m sorry too, for your mama for raising someone so rude and boring, I’d rather be crippled than be a drip like you. Yes I am quite likely in a considerable amount of pain, and you know what, I also was in varying degrees of physical pain when you saw me walking around, why must you bring it up? Yes I’m going to die and so are we all and so are you, especially, about 5 seconds from now. If you want to try being as comfortable as I am I can beat you up right now and stab some daggers into your back. Uh yeah lucky me I have run out of sarcasm to even throw at this one, o falsely jocular person. Yeah, are YOU okay?

Hey you know what, world? Let’s have a conversation about your painful struggle with your own hemorrhoids. Because apparently your head is up your ass. That must be really painful for you and I really admire how you deal with the challenge!

Every time I go out in public in a crowd I get totally fed up. I’m really sick of being the crippled girl. It was a relief last night to scoot over to the couch for a bit and have the pressure off me, the pressure of being looked at and stuck in that box in people’s minds.

You can see their faces as they think “Wow… that could happen to me.”

Pain is annoying and tiring and distracting, and I have very much valued the times it goes away (rare) and that it doesn’t interfere with physical function too much. However, it is not new. It is also not the end of the world.

Limited mobility is annoying and distracting and inconvenient and sometimes isolating or frustrating but you know what… the worst part of it for me so far is the way it makes people act like dumbasses.

I’m off to write a really dumb Mary Sue-ish science fiction story where everyone slathers pity on the people who can’t interface with the cyborg telepathic alien hovercraft symbionts and are doomed to dreary, unassisted, bipedal motion.

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