I got thinking about words the other day. I had been sent an article which suggested 38 words from other languages that we really could use in English. I like these kinds of things, here are three of my favourites:
Iktsuarpok (Inuit)
You know that feeling of anticipation when you’re waiting for someone to
show up at your house and you keep going outside to see if they’re
there yet? This is the word for it.
Kummerspeck (German)
Excess weight gained from emotional overeating. Literally, grief bacon.
Tartle (Scots)
The nearly onomatopoeic word for that panicky hesitation just before you
have to introduce someone whose name you can't quite remember.
Grief bacon! What a concept!
From there I thought that there needed to be some words to describe some situations or feelings that people with disabilities experience. Words that apply pretty much only to the disability experience and which, when used, would communicate to others with disabilities, 'yep, we have a communal experience of that thing/emotion/barrier.' It would also allow us to have a vocabulary with which to introduce the non-disabled to the world of those who live with and experience disability.
Here are some situations that I think need words:
1) The experience of really having to pee and you have to wait to get the wheelchair out of the car or bus or subway and you rush to a public washroom. You race by several open stalls headed for the disabled one. It's occupied. You wait and wait and wait and eventually a non-disabled person comes out of the stall.
2) The same as above but as you wait, you are thinking 'some damn non-disabled person is using the stall again,' but then someone with a disability comes out.
Let's get out of the bathroom.
3) The emotion you feel when you see someone park in a disabled parking space, get out of their car, and run over to a store. You check, they don't have a parking badge.
4) The NEED to check if someone has a parking permit.
Let's get away from parking.
5) The feeling you get when you take help, that you don't need, from someone because they really need to help you.
6) The sense of violation you get from being touched in patronizing ways by strangers.
7) 'You're so inspiring,' is something heard often - well this word would express the weird sense you get from being congratulated and help up as a person of awe when you are buying bread or doing something equally ordinary.
8) The assumption that others have that your life must be sad.
9) There should be a word that expresses the recognition, after hours of doing something, that 'oh, right, I have a disability.' It isn't a constant experience - there should be a word for that.
10) There also should be a word for the feeling of exclusion that comes from being with people and yet, even though they are friends or acquaintances, suddenly you have simply been removed from the conversation.
There are obviously many, many more situations, but we can start with these. Could you come up with some suggestions for words that fit these situations ... new words ... make up a word that expresses that unique situation. Or, add situations and put words to them. I'll gather them all together and post it sometime soon.
Please respond in the comment section here so all the words are collected together.
Please pass this to other people with disabilities or family members of those with disabilities. (I didn't do any family words here, figuring you'd have your own unique contributions to make.)
16 comments:
I don't recognise 1-4, but on reading them I wondered if we needed something for "despair at those people who never got the official hat and clipboard, but still think they're the Parking/Bathroom Monitor, believe they can assess disability at a single glance, and have apparently never forgotten to put their own parking card on the dashboard, nor had a friend or staff who is picking them up from somewhere run inside to get their badge from them."
i have this one and succumbed to it today when I went to the garden centre. I fight it constantly when out and often fail.
Permititus - The NEED to check if someone has a parking permit.
Suffix
-itis
(pathology) Suffix denoting diseases characterized by inflammation, itself often caused by an infection.
(humorous) Used to form the names of various fictitious afflictions or diseases.
Kummerspeck is better translated as grieffat - as speck has a double meaning if bacon and fat.
Seven is "inspiration porn" no?
I was thinking that there already is one word that pretty much covers the lot...I believe it's anglo saxon and rhymes with duck!
We need a word for sitting in your wheelchair, trying to be part of a conversation with people who are standing. They may not intend to exclude you, but they are way up there and not noticing you.
A word for a night when you really need to sleep but hurt too darn much, and after laying awake for hours you finally get up.
Sharon
And a word for the moment when the pain meds finally kick in, and you think you can sleep. Then the alarm clock rings.
Sharon
Seems to me there could perhaps be a single word to cover both the bathroom stall situation that you describe, the parking permit situation, and also situations like when a hearing person monopolizes the ONLY phone, out of a long bank of public phone booths, that has a TDD (tele device for deaf and hard of hearing people) attached to it for deaf people. They're clearly hearing because they're just talking away on the phone without using the TDD at all, but because they're tying up the phone booth (and that particular phone line) you can't access the TDD there until they're done.
Other situations this one umbrella word could cover include things like non-disabled people occupying the seat on the bus or train reserved for disabled people and pretending not to notice that a clearly disabled or elderly person is there needing the seat, and so forth.
I don't know what that word should be, but I want one for that wider experience that I think a number of us with different disabilities have experienced. Not to say that we couldn't also have more precise words for more specific types of experience too, but a more umbrella term that casts all of them together could be useful also.
To Mary: Yes, it is true sometimes people have invisible disabilities. Or even just invisible injuries--for example, there have been a few times I have needed to use the toilet with the grab bars, not because I needed to transfer from my (non existent!) chair, but because of a temporary muscle injury I had at the time that made it hard for me to lower myself into a seated position on the toilet or rise up again without hurting. Grab bars allowed me to do all this more slowly which helped. If you saw me walking, you wouldn't realize that my muscles hurt at the time when doing certain things.
It is precisely because of the possibility of invisible disabilities (or injuries) that I personally avoid confronting others who I think may be non-disabled people monopolizing resources meant for disabled people (unless it's something more obvious like them talking on a phone rather than using the TDD). As you imply, you can never be sure that any one specific person who seems non-disabled actually is. However, I do think it is still safe to assume that the MAJORITY of these disability-resource-monopolizing people are non-disabled, even if we don't know specifically who they are (or aren't). And I think it's natural to find that really irritating and frustrating, and natural to notice when it happens and want to at least make guesses (even if you might not act on the guesses) whether a person monopolizing the one thing you can use (be it a toilet stall, parking spot, phone, etc.) actually needs it (in which case at least you're not waiting, or deprived of the resource for no reason) or not (in which case why?)
#1 "disobowelled" prefix 'diso' from disobey, bowelled from well... bowels.
#7 "mundanespiration" being inspired by the mundane things PWD do
cheers.
Some more words we need:
1. The panicky, praying to any and all gods feeling when your chair battery is dying and you're trying to make it home in time.
2. The excitement when you find an open accessible stall, only to be crushed by the realization that your chair doesn't actually fit in the stall/the stall door opens in.
I'm sure there's some more...
Maybe its a newbie thing but I'd like a word for the special kinds of shame I'm experiencing since becoming visibly disabled.
1) The shame from the internalised societal view that disabled people are less and therefore I am less. I've been disabled but 'passed' as able-bodied until I got a new kind of disabled (really from July 2013 but was told it was likely to be permanent in January 2014)
2) The shame I feel realising how this view of obvious disability as less has led me to be -ist to people. Not in a 'being nasty' way. But in a 'secretly feeling superior' way.
I feel like I'm adjusting OK to the new way my body works. But this shame is just awful and needs a much bigger name and I need a much bigger heart to overcome it.
Especially bathroom monitors, who assume just because you are not in a chair that you have the muscle power at that point to sit *and* get back up again without a grab bar, or from a "normal" level toilet.
A word for those who hiss at you because you are in a handicapped spot, even though you are not in a chair at the moment. Not all disabilities are visible, in fact many are not.
so how do you know that the person coming out of the disabled washroom wasn't changing a colostomy bag, giving himself an injection of insulin, self catheterizing, suffering from crone's disease/irritable bowel or some other invisible disability. Careful about judging . . .
that sense of frustrated snobbery you get when the person who is paid to drive you somewhere, insists on "HELPING" despite being told that when I nee help I will ask for it.Snobbery because they must be less intelligent than me because they don't understand a simple request.That feeling is always followed by guilt.
Then there is that same person who feels the need to explain to the shop keeper what I want, so even if that is what I want, I suddenly change my mind and ask for something completely different that I might not even want, to prove that person wrong. So much wasted negative emotion expended.
One of your best, Dave. Recognize every crip-bit and enjoyed comments as well. Thanks all.
I wish I could give you Anon 14:14 how I feel now as a person who has experienced what you are going through. Now I mostly don't give a shit how I appear in the disabled sense and have lots of fun with it. Don't get me wrong - I don't like it but it is what it is.
Word-making is not a skill I excel at but I enjoyed trying to come up with some ideas:
5. mercept (a mercy - from me of them - accept)
7. first thought was - ick, then how about - meanwell or mundation (building on Gina's ideas)
10. cripsolated or cripisle (perhaps a bit lame - pun intended - crip isolated or put on an island)
Look forward to seeing more ideas from others.
Oh, Dave, you are singing my tune, brother.
1. Pissmolotov
2. Nearmisspissmolotov
5. Samaricharity
6. Pattyrape
8. Calamitoussumption
Best I can do at this time of night. :D Samantha
1 - expeerience
2 - expeerimental
4 - I love "permititus"
5 - grateified
6 - maulested
7 - iconomy
8 - wimpathy
9 - umnesia
10- delistened
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