Join me, be a whiney, whinging moaner!
I sat locked into the wheelchair space on the public bus while a small but determined older woman was trying to jam her walker in the small space between me and her seat. The walker wasn鈥檛 going all the way in. So she just kept reversing it and lunging forward: bam, bam, bam. I was about to give her points for determination when I leaned forward to look down at what she was trying to smash out of her way: my feet.
Never try to educate an obsessed woman smashing one of your body parts with a walker, that鈥檚 my policy. I pulled my legs further back and reminded myself to check for toe breaks later (how many places is a toe supposed to bend? Four?). Having someone treat my body parts the same as fallen tree branches is depressing. Which is pretty much what this post is about: that while people with disabilities don鈥檛 like to be seen as 鈥渉eroic鈥, 鈥淚nspirational鈥 or 鈥減lucky鈥 they aren鈥檛 too keen at talking about being depressed, lonely, and morose.
Being disabled sucks! (It does, for at least most of the people some of the time)
Big news flash, huh? Oops, I think I was supposed to say 鈥淚 am a person with a mobility issue who recognizes my equality but is hindered by the social model of disability鈥 My retort: Stairs.
I鈥檓 not saying I鈥檓 not an equal person. I鈥檓 just saying that whether you believe in God or plate tectonics things like beaches and mountains didn鈥檛 have 鈥渁ccessibility鈥 in mind. And society? My friend in high school was born with one arm and he thought two arms brought about a sluggish stupidity. That might have been the amount of times he was flipped over the front of his bicycle by people swerving, opening doors in front of him and other related 鈥渄ouble armed鈥 behavior. Or as he said when they cancelled a class trip after he had been found climbing up between floors on the outside of hotel with water balloons held in his teeth, 鈥淥ther people were doing it.鈥 Guess leaping around four floors up with one arm isn鈥檛 either 鈥渆qual鈥 or 鈥減lucky.鈥
If I am a person with a disability, that still means I am a person right? I still get to be unhappy, upset and realizing that, truth be told; I liked life a lot better as an able bodied person. Whoops, that was another phrase I鈥檓 never supposed to say. I know I am supposed to move on, thank whomever for each day and always look on the bright side. That just requires a few more times passing out and a bit more brain damage since up till now I鈥檝e always been sarcastic, with a biting tongue which didn鈥檛 suffer fools gladly. I鈥檓 the girl confronted because people had the impression I liked torturing children when I was only reading out Edward Gorey鈥檚 in class (an pseudo-victorian alphabet of dying children): F is for Fanny sucked dry by a leech, G is for George smothered under a rug. Admittedly, I do give that particular book a lot as Christmas presents (along with female pleasure toys to my pastor鈥檚 wife....because I care!).
Got a little distracted there. Back to how I don鈥檛 like being disabled. And I don鈥檛. It wasn鈥檛 in my top 20 life choices, or the next 20. I think it came right after, 鈥淐areer in toxic fume factory鈥 Am I the only grump?
Know what sucks:
Disabled Bathrooms: Can鈥檛 find em, they鈥檙e not working, they require a special key to get in, or someone has taken in a picnic, a book and plans to make an afternoon of it.
鈥淢odified鈥 or 鈥淎dapted鈥 鈥 This is often slang for 鈥渢wice as hard鈥 (except for modified vehicles; they鈥檙e cool). Talk to me later about hand-cycles and hills.
Ladders 鈥 they laugh at me late at night when no one else is listening, curse them.
PMS/PMT 鈥 No, it鈥檚 not limited to being disabled but if you have it, you鈥檒l agree with me. If I have it, you鈥檒l get out of my way鈥OW!
More Disabled Bathrooms 鈥 this sucks so bad I鈥檓 listing it twice.
People saying stupid things: 鈥淚t鈥檚 not how long you live, but what you do with your life.鈥 鈥 Does this phrase come with a gun to shoot yourself with if you happen to suffer with fatigue?
Curb Cuts: When you put in a curb cut, isn鈥檛 it supposed to actually go all the way to the pavement, instead of having a two inch difference?
Height: I used to be 6鈥3鈥, I was well versed in giving dirty looks down my nose at people. Now in the chair I am 5鈥1鈥. There are 11 year old children taller than me. SUCK!
Mobility multitasking: I used to walk and drink stuff simultaneously. I could talk on my phone and walk. I even used to read and walk. Now the most I multitask is pushing the chair and saying, 鈥淓xcuse me please!鈥 (while in my mind I am thinking, 鈥淛eepers, when did ambling aimlessly across the ENTIRE sidewalk become a national pastime? I鈥檝e seen drunk people walk straighter than you.鈥)
Fatigue: it makes you actually think things like 鈥淚 need to count my cutlery, I wonder which day this week I will be strong enough to do that?鈥
(add your own list here)
I鈥檓 not sure what is wrong with saying that regardless of whatever model you use to explain what is wrong with the world and disabilities, sometimes things suck. Because they do. I am a human being, and I will defend my right to be a whining, moaning, whinger when I feel like it (like today for example). And let鈥檚 face it, I鈥檓 the type of person who if they lived next to a superhero family would be going, 鈥淲hy do I have to go so slow when they get to fly everywhere? Walking blows!鈥
Of course, I only know what sucks about MY disability and as you鈥檝e seen, I can go on and on about it. The great thing about the 大象传媒 is they have a handy 鈥渨hinge鈥 section called 鈥淐omment on this entry鈥 where YOU can tell everyone (and me) what sucks about your disability, or your day, or me, or your neighbors....
鈥 Visit
Comments
Re, crowds of people who won't get out of the way even after repeated polite requests, I did my own rant on that particular subject at my blog entitled When this happened to me, I thought perhaps it happened because I was on crutches and assumed that, if I had been in a wheelchair, it would have been more obvious to people that, hey, I needed more *room* to get by. But then I talked with someone I know who was able to set me straight on that score: able-bodied people seem equally clueless either way, at least in the opinion of the person i talked with. You?
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I think you actually meant the Medical Model, not the Social Model - the Social Model hinders no-one other than those who discriminate against us. Being Disabled does suck, but living with an impairment needn't, providing we are getting what we need to enjoy an acceptable quality of life.
i think its so considerate that the bbc have a handy whinge section.
today i mostly hate and despise cab drivers. i would give more examples, but i'm not sure the beeb's comments section has enough space.
Andrea: I'm not so keen on crowds either, particularly ones which expect people in wheelchairs to be able to move sideways at a moments notice (which is currently prohibited by the laws of phyics)
Chris Page: Thanks but I actually did mean Socal Model, including the self regulating one in our own heads, but perhaps I should have phrased it: "I am a person with a mobility issue who recognizes my equality but is hindered by society's lack of the social model's acceptance of my different ableness" (or 'special ableness' or 'person of special ability') - but that just seemed a bit too long and obsessed with pedantry.
Boris: tell me more, I dislike many cab drivers too - particularly when you tell them you are in a wheelchair and the company sends over a car the size of a Yugo.
Elizabeth- thanks for the whinge invite ... it's a perfect day for it.
Fatigue. Crushing fatigue. Life altering, life squelching fatigue. It sucks.
I can't push and fight despite my disability. I can't be courageous and determined in a way that is instantly recognisable to most people. Mine is such a quiet fight.
I don't even know if I'm accepted as disabled when lack of energy is my main disability (even though it often renders me less able than a lot of people). Who decides?
Elizabeth McClung:
If TAB (temporarily able-bodied) folk would just think things through they would realize that even if a wheelchair COULD move sideways it wouldn't really take that much less space (would it?) than a chair moving forward, so how would that help, really? But, oh dear, that would require them to perform the difficult task of *thinking*.
I guess that's part of why I once assumed people would "get it" more easily with a wheelchair user because it just seemed so glaringly obvious to ME ... but given that both you and others I know run into the same problem I guess it's not so obvious to everyone. (Okay, I admit, I think I once upon a time assumed sideways mobility too. Silly me. But I'm pretty sure I did *also* see there wouldn't be a real advantage to it in terms of space requirement.)
Whereas a person on crutches (which I have been at times) CAN move sideways. In theory. The question then being, "Ah, but can I move sideways SAFELY?" And, at the times when I have been sufficiently unstable on my feet to require crutches in the first place, the answer has generally been "no." But people don't seem to think that one through either.
But I'll spare you the rest because anyone who wants to see the long version of my rant can do so by following the link I provide in my first comment up above.
Trying to get a job sucks. Everything looks great on the vita, and then they see you in person...Suddenly, you're a totally incompetent child who shouldn't even be allowed out at night.
Ah yes, the curse of no longer being able to do six things at once. I am currently torn between whether to give in and buy a cup-holder - looking very uncool in the process - or just carry on dropping things. And how do you carry a bag with shoulder and back pain? And how do you transport a whole class's worth of textbooks on crutches without dropping them all over the corridor? I think I need a newly-disabled person's guide to getting things done...
You know what sucks about having a disability? All the wrong people want to strike up conversations with you. Like they've found someone they figure is so desperate for 'contact' that they'll want to tell me about the time Aunt Elly was in a wheelchair and didn't make it to the ... um ... toilet. I see them heading for me, their loneliness flapping like a cape behind them, seeing me as someone who can't or won't escape their attentions. They get to relieve their loneliness and feel good about it at the same time. And, and, and, God save me from another person who wants God to save me. This, I know, is a tad unkind but ... you asked.
What confuses me is; people can see my daughters (who accompany me on trips outside the home) but they cannot see me. Now when people walk towards me I just stop, they either see me and move to the side or bump into me and 'apologise'. As they say; such is life. This is not a whine, just an observation.
My main winge is the same as the above - people trying to cure me. 'Laying on hands' always makes me think of being touched up. Never quite sure how to dodge out the way fast enough. I'm a partial deafy and have to say there are considerable advantages too - not hearing my husband snore, not being the one who wakes up when one of the kids can't sleep... almost worth missing the dawn chorus (almost)...
If ever I'm waiting for a friend in town and I'm a bit early, I can guarantee someone will come up to me and ask if I'm okay and do I want help. Or, like the other day, ask me if I want help crossing the road. Seeing as the crossing was quite a way from where I was sitting and I wasn't sitting anywhere near the road it was obvious to anyone with half a brain cell that I didn't want to cross the road. I hate to be rude to people but I really felt like saying 'Of course I don't want to cross the road you blithering idiot' but I didn't.
And I also hate it when I'm stuck behind what I call a 'crab person' - ie a pedestrian that walks sideways while I'm trying to overtake them so I can never get infront of them. Also couples that hold hands in front of you so that they take up the whole pavement. Plus many other pedestrians who amble along without any awareness of who is behind them while they slowly meander about.
Also I hate it when I stop to let people go past me and they don't say 'thank you' - infact they don't even look at me at all!
Aaaargh I'm in full whinge mode now!
Totally agree about bathrooms - and probably so do a lot of other people as is one of the most popular posts on my blog.
But, while I'd give up pain/fatigue/etc in an instant, and while my pre-illness life was very enjoyable... I'm getting to a point where I am enjoying my with-illness life too. It's a long, long, LONG way from perfect, but there's still a lot that's good in it - some of it stuff I didn't have before because I was too busy or whatever.
Rachelcreative: I think fatigue is one of the least understood debilitating conditions - I definately think it is a disability, particularly as it seem to bestow invisability upon you; like drowning, often a person just sinks out of sight.
Andrea: I liked the rant, and I agree, people don't seem to understand the implication of things - even that if you are on crutches, maybe taking all that extra effort to get through might be painful or taxing upon you?
Bookwormjoanne: Oh, that's what I have to look forward to? Thanks, I get enough of this if I go out in the chair at night. People speak slowly and ask if I am lost - they are probably looking for the name and address that should be pinned on me somewhere.
Lilwatcherguide: So true, I want that guide - what happened to our wonderous future where robots would carry all our stuff for us? If you get a wheelchair ask for an underneath mesh sling - good for 2 oxygen bottles or about 4 textbooks.
Wow, I am so glad I am not alone in whinging!
Dave Hingsburger: Well, I had a great story about projectile vomiting but after that comment....
Seriously, the ones which bother me a bit on the bus are the ones which turn and just say things like you are in the middle of a conversation - did they perhaps begin this conversation with another person in a wheelchair and think we all have telepathy?
Sue R: Okay, that kinda sucks (they just walk into you?), but on the other hand, does this mean you have a superpower? You could be the greatest burglar of all time?
Jo Verrent: Yes, I've been "cured" more times than I want to remember - never seemed to take - I have to wonder how many times a day these people do this - does hand laying count as OCD?
Liz Baker: You comments all made me laugh in agreement - but on the bright side, when I sit and wait for someone, people throw down money - someone throwing down a few pence/pennies is insulting cause a) I'm not begging, I'm WAITING and b) Hey, aren't I worth more than that you cheap jerk!
Mary: I don't know yet how I feel about my 'being-ill' life, but I have met a ton of great people (mostly online) who can be funny, compassionate, considerate and passionate - which I never would have if I continued on in my AB obliviousness.