For someone who spends much of his life paid to be in front of others, I don't much like being looked at. I think, maybe, because there is a huge difference between how I am perceived professionally, at the front of a room in a position of respect, and personally when living an ordinary life. In one part of my life, I am 'speaker' or even 'expert'. In another area of my life I am 'mutant' or even 'disgusting'. It sometimes gives me mental whiplash as I gear up or down between perceptions.
One thing I'm really peculiar about. I don't like to be seen getting out of a car. Because my legs and feet work differently than those of others, I have a convoluted way of exiting vehicles. I know it's graceless and I know it's awkward but I also know that it works surprisingly well. I have found that people outright stare at me while I perform my own little bit of personal gymnastics. They don't even attempt to conceal their odd interest. I get the sense of what it must have been like to be gawked at by those paying a nickle to see 'difference' in canvas tents at carnivals. It's, to me, personally painful.
It's one of those things I mentioned to Joe early on into my disability. After mentioning it, he also noticed the 'sideshow' mentality of those nearby. Without really talking much about it we've developed a kind of tag team effort to keep me safe and to frustrate the onlookers. If there is anyone around, Joe opens the door and then places himself as a block to the view of onlookers. Most of them don't have the moxie to then move around to get a better view of the 'event'.
I appreciate this more than I can say. Though I am not ashamed of my disability, I also do not want to live my life on display. Though I am not ashamed of moving differently, I do not want to perform for the interest of otherwise bored eyes. I like my privacy. I like being able to be different and unseen at the same time. I like to be seen on my terms, not to be defined on 'others'.
Getting out of a car.
Before I became a disabled guy, it was something I never thought about.
After becoming disabled, it's become something different. Something political. Something defiant.
It's like there is new meaning to movement. New meaning to what was once ordinary.
Disability - discover the nature of the new you, discover the nature of the cold stare.
I'm glad you have someone like Joe who helps you retain your dignity by preventing the everyday occurrence from becoming a spectacle.
I know it is different but when I use to work in EMS, we would refer to the people who stopped and gawked as the Ooh Aah Squad (you know, they would stop, point, and ooh and aah over it). I guess I never realized people treated disabled people that way too.
I cannot imagine. I have seen people who stare and wondered, "Do they think their eyes are invisible?" Most of us don't like to be stared at--for any reason. It's rude, and especially when someone is performing a private function, which I think getting out of a car would qualify as.
As a child I was stared at, and commented about for minor differences in appearance. I hated it and you never forget how it felt.
Kind of like Franklin Roosevelt. According to Hugh Gallagher: "His actual words, said to some newsreel cameramen taking his picture as he was being helped out of a car in 1928 were, 'No movies of me getting out of the machine, boys.' And from then on, remarkably, no such pictures were taken."
(From FDR's Splendid Deception.)
I saw a t-shirt that said, "Keep Staring I might Do a Trick,"
When I am being lowered on my van lift and see people lined up to gawk I wish I had that on a sign I could hold up.
What is with people? Am I the first person you've seem with a visible difference? And, don't get me started on people stepping over and acting like I am a piece of furniture. As I chant in my head, I will not roll over you, I will not roll over you...
Young friend has a plate on her Face supporting Brittle Bones.
The other day a young child kept staring at her, the Mother did nothing to discourage him so friend moved closer and closer, all the time the child staring at her and then went "BOO!".
The boy screamed and ran chased by a distraught Mum. bet he never stares again.
Mind you for my part it seems always the Kids who will ask why I wear Big Boots and I will tell them (Usually that without them I walk around and around in circles) Adults assume I am too stupid to know, or pretend they never notice so as not to offend me.
In one case I changed Doctors because one did not notice I wore boots until I said I needed to see an Orthopedic Specialist then almost accused me of lying about all the time spent in Hospitals and Operations I had been through The Specialist however immediately saw the scars.
One expert without seeing me in person wrote of my need for counseling for Illness Beliefs.
A boot maker on seeing a doctors referral said "He can't spell either!"
Ahh stare at me I don't care and I enjoy people underestimating me because of my looks. Such Tips them up often
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