Things I wish the Abled*could know about people like me, who live with a neuromuscular disorder / disAbility.
1. I am not your inspiration, nor am I your cause.
2. I am not your mascot, or a posterperson for, nor the absolute authourity on my particular disease, nor am I the expert on anyone else’s.
3. I have my own dreams and ambitions. Respect them.
4. Respect my personal boundaries. I respect yours.
(that includes my wheelchair or mobility device/equipment or my service dog etc. so touching anything I have going on over @ here* requires my express consent). Otherwise, it’s called assault and yes, I will press charges.
5. I can see and hear you perfectly. Address me directly. (Unless I’m ignoring you). You may be surprised/shocked by my reply, I’m not a toaster. I’m a human being, just like you.
6. No,I don’t know your sister’s friend X who also uses a wheelchair. (But if she’s hot* and likewise inclined* and I happen to be single* at the time*~ maybe you can get me a phone number? 😉 )
7. If I need help, I can ask for it. Conversely, if You need help, you can ask me too.
8. You can pray for me if you have the burning desire to do so. In my experience, it won’t change my reality. No, I didn’t do* anything to deserve this condition that you may believe was punishment from some vengeful entity, but If that’s what floats your boat, knock yourself out. (just don’t touch me, or make me run over you with this big black chair).
9. Yes, sometimes this* hurts (beyond belief) but what hurts more, is Ignorance… That* hurts everyone.
10. No, I never imagined I would ever look this fabulous. People stare. I do my utmost to make it worth their effort.
How is it that I’m not functionally disAbled until the moment I leave my home? (Not that it’s a Bad thing I’m a very Proud Radical Crip) I have had to make so many modifications to my home and personal environment over the years to make my life possible (occasionally I have invented where there are no modifications available, or affordable). I’ve been very fortunate, I realize this.
The true problem begins when I leave my home environment and am faced with so many barriers (not just physical built environment i.e. stairs, curbs, and the like) The most debilitating barriers I face on a daily basis are attitudinal. Most notably from “professionals” i.e medical professionals,and those who should be more enlightened, but aren’t. Fear and ignorance,discrimination, judgement, and assumptions about who I am (or Should* be) from the folks I meet on a daily basis occasionally take a piece out of my soul. Ignorance is the most debilitating of disAbilities my friends, and it’s pervasive.
This is why* I do the things I do, and attempt to educate and inform. But even SuperCrips like me get so very tired of it all.
I know most of you really* don’t care or give much thought to folks living with disAbilities, I know I sure didn’t until I acquired one of my very own. I am learning continually about this new existence, and I thought maybe a few of you out there would take a chance and come along with me …disAbility (btw, This* is how I choose to spell dis-Abled no, I am not having a stroke, nor am I making toast)…my apologies, that* was crip humour. ..is a journey…and trust me it’s a destination as well… So, here goes…
You may have questions, I may* have answers, but I have spent my time watching other folks and thinking about perceptions and realities. Society teaches us that folks with disAbilities are to be seen as “other” and are not to be engaged with socially as we were taught (Back in the Day) that disAbled folks won’t engage with You either, or maybe you were taught that you might contract whatever *those* people suffer from. It was only true if one happened to have a cold okay?
Caveat* : Some of you will or will not appreciate my sense of dry gallows humour, but, so be it it’s all part of the package. what you see, is indeed what you will get.