Disability & the Un-wanted "Fame"

Having a rare condition means that being noticed is just a part of the package. If I were a product on a store shelf I would have a WARNING label and it would probably read something like this:

WARNING: Will draw unwanted attention and may break from little to no apparent reason. Read safety manual before operating; DO NOT leave unattended with children 10 years and under. 
Store Policy: No returns, refunds, or exchanges after purchasing. All sales are final!

But since I am not a product on a store shelf and I'm an actual live breathing human being -- I instead have an invisible sign that says:

Currently accepting applications from the shadiest characters of society to offer me their 2 cents. Must submit applications by interrupting my morning routine, while I am eating lunch, or while I am otherwise minding my own business. Sanity and logic are not required for this conversation.

Seriously. I am sure some of you must know what I am talking about right?! I can't be the only O.I.'er out there who gets told all kinds of special comments from fellow-earthlings that roam this planet! 
"God bless you dear!" (My reaction to this has been "but I didn't sneeze!")
"Jesus will save you." (I wasn't aware I needed saving. What's going on? Is there a fire?)
"You are just so amazing." (Said to me out-of-the-blue by Random Stranger).
"I don't know how you do what you do." (I breathe the same air you do, buddy). 

There is a sense of anonymity that I have never known. In school I remember complaining to my friends that if they skipped a lecture it would be unnoticeable, but if I were to skip a class the professor would immediately notice -- and in fact they did! Where's the girl in the wheelchair? I have also been introduced like this before, Have you met Sandy? She's that girl in the wheelchair. The small one, I'm sure you've seen her zipping around campus. 
What's worse is when my lack of anonymity is flipped and I am expected to know EVERYONE ELSE in the world. "OMG YOU DON'T REMEMBER ME?! BUT I REMEMBER YOU!" Well obviously you remember me, I am (my wheelchair is) kind of ... uhh.. difficult to forget and misplace. I used to feel bad when I failed to recognize someone when they so clearly remember me, now I have learned to play it off on my general social-awkwardness to begin with.   

If I go to any store, restaurant, movie theater, or any other establishment more than twice I begin to get recognized by the people working there. I'll see it in their stares, oh she's here again. I am going to go talk to her and make her feel as awkward as possible. From what social interactions I have observed, it is my understanding that when two strangers make small-talk with one another it is usually because they have something in common. But with me this never seems to be the case. Or at least I don't plunge far enough into the awkward-conversation, not far enough to find out what I could possibly have in common with this person who is looking at me like they just found a lost puppy they would love to adopt. 
Also, it is never exactly small-talk that I am having with this stranger. I am not one for small-talk and in fact I despise it, but I'm pretty sure no small-talk involves some blunt observation of another person. How come my friends never have small-talk that goes like this:
"Wow you're short!"
"So how tall are you?"
"Exactly a yard."
"That's so cool! Have a nice day!" 
"Umm yeah." 

Or 80% of the time it is not about me but my chair:
"Hey, nice chair!"
"How much does it cost?"
"A couple thousand dollars I think."
"Can I ride on the back?"
"Umm.. no..I .. don't really know you.." 

Sometimes I wonder what it's like to be able to go through an entire day without a stranger trying to talk to me. What is it like to not be recognized by people you don't even know? What is it like to not have your existence acknowledged by random beings? How does it feel to go from place to place without any history of you being there before? Does it make you feel worse to go into a doctor's office and not be greeted with warm and knowing smiles by everyone in the building? Depending on the day and my mood my answer varies, but in general I've come to get used to it. I take all the awkwardness and strange behavior in stride and tell myself that this is all a part of the package... I mean really what else is there to do?? Because in case you hadn't noticed yet: this package does NOT come with an instruction manual. 

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6 Responses to Disability & the Un-wanted "Fame"

  1. This is my new favorite post. I get the "God loves you" from the random old person all the time. Just recently I went into a store I have never been into and was instantly recognized from elementary school. I even had some woman just wanting me to give her a hug. Relunctly I did. Didn't want to be mean. But I'm thinking why? Were they thinking I was going to cure them by touching them? lol. I have people grab both my hands and say "you are adorable" crap and then they ask me how old I am and there like "REALLY!?" Why would lie about that? But I really hate the "how tall are you?" questions. I mean, is that ALL you want to know about me? But what can you do? Getting upset is only going to make it worse so the best thing to do is take it in stride.

  2. Best blog yet!!! soooo true...I must say I have experienced all of this. When I use crutchers ( I stand at almost 3 feet) I also get the random requests to be "picked up" but not for dates they literally want to lift me up into the air?!?!?

  3. Oy, the most annoying thing is that I have the opposite problem. I am in high school, so during passing period things are CRAZY. The problem? People don't pay attention, and cut in front of me, and don't move. My aide tries to help out, but it's the dang kids' fault...ridiculous. I mean, my power chair is BIG, hard to miss, right?

    Welcome to high school, where every 45 minutes runs you the risk of being mauled to death by pubescent youth!

  4. Great Post! You have a real knack of "telling it like it is," with the right combination of humor, insight and honesty....I'll keep reading!

  5. Lauren: When I was in HS I was allowed to leave each class about 3-5 minutes early (depending on how far apart my classes were) to to get to my next class and beat the crowd. I would check into that. I remember plenty of times being knocked into and people tripping over me.

  6. Tahwuh: I am able to do that, but I hate to miss anything going on, :/ If I can leave early I do, but it still happens often. My poor aide gets walked into...literally, walked into. Not just backpacks, mind.


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