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.
14 comments:
Ohhhh! Here is an even better list!
http://disabilityrants.blogspot.com/2007/03/disability-dos-and-donts.html
Here's just a few
1. Ask us what's wrong with us.
2. Ask us what happened to us.
3. Ask us how we do what we do.
4. Tell us we're awesome for doing the ordinary.
5. Think we're awesome for doing the ordinary.
6. Assume anything.
7. EVER try to freakin' push us before asking if we need help.
8. EVER try to freakin' push us after asking if we need help and we say no.
my sincere and embarrassed apologies for asking you about things at wiscon. i should have known better.
i'm totally willing to talk about disability/pain/whatever with other disabled people. okay, it usually looks more like turn based ranting, but still.
this may have something to do with the fact that my disability is so much more invisible than yours. and me talking about it is a part of informing people that i am disabled, whereas any one who can see can see your chair.
Ah! sdn, no problem, I meant to find you later and apologize as well for being cranky and incoherent... I think you hit the jackpot at that particular moment. But then I never ran into you the whole rest of the con.
betsyl, yeah I know what you mean about the turn-based ranting, and also about the invisible disability. That has a whole separate set of tough.
I so want to read that story, Liz!
::lets out sigh of relief::
thanks. if you ever need any books for you or your family (remember, i'm a children's book editor), let me know!
Hi Liz,
Love you, love your blog. Any idea how we can start a disability blogger TEAM. I'm new at Blogger and want to link up with other disabled bloggers too. I have only two posts so far, but wnat to do video blogs with visuals of barriers, rudeness, do's and dont's etc...
peace,
River
Don't laugh - but I really *am* going to 'clip and save'. Most of it is just common sense, but sometimes common sense doesn't prevail.
Love it! Thank you for writing it.
My daughter walked by as your blog popped up and she goes, "Cool hair, Mom. Why don't you try that color?"
Hey! Chair is news to me, but thanks for the straight-up reminder! (People are so dense.) Yer brain ain't broken, now, is it? Heh heh! Roll on, chica!
I'm taking down my blog, BTW. Continual evolution of the online presence and all that. Escribame!
First of all, you are terribly hard to stalk as you have about 37 blogs. But I do my best. Secondly, 'clip and save' made me snort.
Robin! I can't figure out who you are! *you* escríbame! who which which oh help! Which Robin?
Plain Jane I'm glad this made you laugh! I forgot I wrote such a ripsnorting rant! I only remembered the list of manners and the rant part went right outta my head.
I LOVE this post.
I have to say while I obviously eventually noticed the chair at BlogHer it was completely shrouded by your incredibly infectious smile.
You were a terrific moderator during the intolerance intervention panel...far too cool for me to feel comfortable to approach, but I wanted to.
Righteous! I was really looking fwd to seeing you at BlogHer this year, but I couldn't make it. (And I know I would've asked you at least a couple of these questions. Dang.)
Sending hugs from the right coast.
xoxo,
ae
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