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arkallen

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Mar 8, 2009
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Other
Diagnosis
05/2009
Country
AU
State
VIC
City
Wodonga
I DETEST the use of capital letters to add emphasis. And I LOATHE! the inane habit of doubling or tripling exclamation marks to further exclaim their exclamity. But what I ABHOR is the way people invariably direct their questions and comments to the taller, walking person when I am out with an able-bodied companion. Their (perfectly reasonable) assumption that I can’t fend for myself DRIVES ME NUTS !

I was slow to notice how frequently this happens; and I had well-developed defensive mechanisms in place long before I consciously identified the ‘Walkie Talkie Effect’. For example, in able-bodied company I would race to be first at a counter; I would prepare all my typed messages in advance; and I would always keep my computer on standby, ready for action should anything need to be communicated to anyone! Over time, however, I have learned that my defenses are ineffective against the powerful Walkie Talkie paradigm: people will chat over my head, and there is little I can do to stop it. I am hypersensitive to an ironic cruelty that occurs with regularity: while I am the one with no voice, the able-bods above me instinctively revert to non-verbal communication to mutely discuss my competence. I have seen this a hundred times: in a furtive glance away from me and up to the Walkie Talkie, the person I am attempting to engage will search my companion’s face for some clue as to my fitness to conduct business in public. I can read it in their eyes, “Is it OK to talk to this man, or should I talk to you instead? Are you his carer? How handicapped is he? Can you rescue me?” GOSH I hate THAT.

Recently I was travelling by train with a cherished (nameless) family member, and the Walkie Talkie Effect was in full swing! On this occasion I was definitely the ‘expedition leader’; my companion having considerably less rail experience, and none whatsoever with a wheelchair. But do you think anyone believed that? Not for a moment. CRIKEY! It was on for young and old with railway staff almost oblivious to my presence, let alone my consummate ability as a locomotive pilgrim. My DISPLEASURE reached a crescendo when a passenger standing onboard our carriage (my unnamed relative has rather a penchant for engaging complete strangers in jovial banter) said, about me, verbatim: “And doesn’t he look smart too, nicely turned out in his cap and scarf”. AARGH! How DEMEANING! The memory makes my skin crawl.

I understand the Walkie Talkie effect, and I’m certain that if I were either one of the walking persons, instead of being the odd-bod in the wheelchair, I would do just the same. I probably have done. Most folks genuinely want to help, after all; and how are they to guess the degree of my ability? I suppose it’s reasonable for anyone to conclude that my difficulties are due to some sort of brain damage; or a mental handicap. I sometimes get the feeling that is what people are thinking, and I have a little card in my collection that I flash now and then:

Brain Card.jpg

It HURTS! In the same way that we often feel much younger than our years, I am inclined to forget starkness of my circumstance until something or someone reminds me. These moments can be tipping points for many collected emotions: ANNOYANCE, FRUSTRATION, JEALOUSY, EMBARASEMENT, FEAR, UNCERTAINTY – you name it.

But mostly, it pains me to say, it’s sheer pride. Few of these feelings are any different in nature or intensity from those I felt in different circumstances as a ‘normal’ person throughout my life. It’s so tempting to make excuses. It’s all too easy to indulge the feeling of being wronged. Attribution is a delicate matter: a wheelchair can be a great pretext for making one’s own issues everyone else’s problem. I have had a long attraction to the ‘quieted soul’ that King David describes in Psalm 131:

My heart is not proud, LORD,
my eyes are not haughty;
I do not concern myself with great matters
or things too wonderful for me.
But I have calmed and quieted myself,
I am like a weaned child with its mother;
like a weaned child I am content.​
 
Too true, too true, you put it so well.

I tend to find that people talk loudly to me.
I should make a card up like yours to show them.

Cheers

Peter
 
I recently had my first experience in public. After working all day selling our house in Greensboro, i checked into a hotel and went to have a beer. The bartender flag me because I have already apparently been over served due to my slurred speech. I was able to tell her that she was wrong and this was my first beer and that I have ALS. I then sat down and lost all interest in enjoying a beer and relaxing. I know this pales in comparison to your story, but yours is my to come. Thanks for sharing your thoughts, it helps.
 
You not only have a voice.....you have an eloquent one. It's just been silenced too soon.
 
This quiet you speak of, like a weaned child...I get this Roderick, but sometimes we feel the need to defend ourselves...for what purpose? It only aggitates us more. To find that calm center in God within ourselves, from which we can relate to others, inspite of their fumbles and inadequacy...in a sense they feel more helpless than you do...not knowing how to act or what to do...we have all been there. I remember embarassingly a time when I took up a magazine quickly to avoid having to speak to someone who was mentally slow...why? I felt like I was an idiot and did not know how to relate...I felt inadequate!

I pray we all find that center within ourselves where we can be at peace whatever happens. But if there is no peace, we can, like you have, learn more about ourselves so that we can grow into this peace. Thank you so much for sharing your thoughts.
 
Roderick - I share your FRUSTRATION! ! ! ! ! !

I often feel like I am regarded as the equivalent to a FIVE year old CHILD or sometimes even a DOG! ! ! ! ! ! ! ! !

Too bad I've lost most of my BITE! ! ! ! ! ! !

(sorry I couldn't resist - I personally hate the presumptuousness of "enjoy" - and also "lol" which is the text version of a cheesy laugh track)
 
Once again, wise thoughts. I have been known to lose my cool with the type you describe. My retort is not PC so will be left unsaid.

AL.
 
Roderick - I share your FRUSTRATION! ! ! ! ! !

I often feel like I am regarded as the equivalent to a FIVE year old CHILD or sometimes even a DOG! ! ! ! ! ! ! ! !

Too bad I've lost most of my BITE! ! ! ! ! ! !

(sorry I couldn't resist - I personally hate the presumptuousness of "enjoy" - and also "lol" which is the text version of a cheesy laugh track)


Yes Richard, that "Enjoy" that waiters smuggly parrot when they serve your meal. Is that the one you are refering to? I HATE! that moment! I find it intrusive, unmerrited, and I think youv'e hit the nail on the head: presumptuos!
 
Too true, too true, you put it so well.

I tend to find that people talk loudly to me.
I should make a card up like yours to show them.

Cheers

Peter

Indeed Peter, What's with that? People began talking loudly to me when all I had was a wheel chair, no voice issues at all. I guess it's a well-meaning assumption that this poor person in the wheelchair must have a whole swag of issues. And you cant blame people for jumping to the wrong conclusion I guess, they mean well.
 
I find that an accidental :twisted: bash on the ankles from my wheelchair footplates gets people's attention. "You will listen to me!"
 
Oh Man.

I love my LOL--use it a lot. And I love my caps for emphasis as it's easier than typing the code for bold print. I'm a culprit for both.

As for the treating differently in a wheelchair...

I don't get that here when I'm out with my daughter using my scooter--but it was worse a few years ago when I couldn't control a scooter and had to use a real power chair as I had a completely dead side from a stroke. But, strangely, when I had the arm strength needed to use a manual wheelchair, people didn't assume I was brain dead.

Roderick--cut the middle-man and just use your voice amplifier--if your voice is GONE--keep an iPad or netbook at the ready and type fast--or have phrases ready to shout out via those lovely mechanical devices.

I absolutely refuse to be treated with anything less than the common courtesy every single person gets.

You'll find later as you age that people also tend to treat elders as if they are a little slow or are incapable of doing anything for themselves. (And family members are the worst culprits) They treat their parents as if they were children.

My personal pet-peeve when I teach my CNA classes is when my students will say things like "It's time for us to have our breakfast, now" or "It's time for US to have our weight done" etc, etc, etc.

I tell my students to drop a quarter in my jar each time they use the "US" or "WE" when they talk to a resident/patient/client that is not a 2 year old. I mean it REALLY irritates me. I simply won't allow my students to use WE or US. Ever. Period. Triple exclamation point.

Or this one "I'm here to feed you now". Don't know why that one drives me so nuts. We feed our pets, not people--What is so darn hard about saying "Hi Ms. Smith. I'm here with your afternoon snack?"

There's a sample test question I use in my class. "A resident's husband has asked for some time alone with his wife. What should the nurse aide do"
a. let them visit, but leave the door ajar
b. let him visit, but listen outside
c. let the husband and wife visit in private.
d. tell the husband not to disturb his wife

Almost NO ONE picks the correct answer. Pretty simple answer, you'd think. 75% or so pick "let them visit, but leave the door ajar"

I won't even start on how they answer the sexual relations questions. (Yes, people over 60 have sex, surprise!)

Simply don't allow them to talk 'around' you is my suggestion. I wouldn't hold up that card--I'd make a prepared comment in your computer to push 'send' on each time someone tries. Or make one that says "The lights are ON and someone is HOME" and put the speaker on LOUD.

Of course, I have bad habits, too. I use "hon" a lot. Way more than I should. Bad habit. But condescending just plain ticks me off--no matter who we talk to. Not everyone that is older has Alzheimer or Dementia. My grandma had the lights on and someone home til the day she died eating her dinner at 95.

Not sure why you use the cards instead of the voice amplifier you built into your PWC. Think I'd be too lazy to bother making them unless I was totally deaf. But as we all know, I talk a lot--just like I write a LOT. :D

So, no more LOL, huh Richard? Guess I'll have to use the emoticons more often.
 
I absolutely refuse to be treated

Of course, I have bad habits, too. I use "hon" a lot. Way more than I should. Bad habit. But condescending just plain ticks me off--no matter who we talk to. Not everyone that is older has Alzheimer or Dementia. My grandma had the lights on and someone home til the day she died eating her dinner at 95.

Not sure why you use the cards instead of the voice amplifier you built into your PWC

Sadly there is no voice left to amplify! Cards are excellent for busses and one or two other places where you know exactly what you want to convey.
 
Roderick, as usual you write a great piece. Enjoyed your feelings written out.

Not me, my grandmother lived alone and died at age 96. I asked her what was
so great about being 96? She said; "no peer pressure." :)
 
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