Ten Things…

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? ūüėČ )
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.


~Crip Out~

Thoughts on Ableism*

There exists a term called  *Ableism defined by the Urban Dictionary* thus: Ableism is the discrimination or prejudice against people who have disabilities. Ableism can take the form of ideas and assumptions, stereotypes, attitudes and practices, physical barriers in the environment, or larger scale oppression. It is oftentimes unintentional and most people are completely unaware of the impact of their words or actions.

That being said, Most of us “Crips” (slang* for disAbled folk solely used amongst our peers) Experience this phenomenon on a regular basis.¬† It affects us in any number of ways. I choose to make Ableist moments teachable moments when and if I have the chance to do so.¬† Hopefully my re-education will have some lasting impact upon the ignorant.

Case in point, just today I had someone ask me where my “friend” was.¬† Let’s frame this a bit better for illustration’s sake.¬† Admittedly, I am not a Gold Star* Crip.¬† I may or may not have had my disAbility since birth, but the onset struck hard and fast when I turned fifty. Sometimes I use a rollator (rolling walker) but predominantly I use a power wheelchair that I have wrestled into submission by tweaking the power, settings and programming. Indeed, I confess to being a geek*.

Alas, I digress. I was at an open air artisans market that I had gone to only once before today and a woman I certainly never met previously came bounding up to my right side and grabbed my elbow hard enough to make me wince and said,”Where is your friend today? Are you out here by yourself? Can I call someone for you?”¬† I was so momentarily stunned that I let go of my rollator and almost fell flat.¬† I had no idea who this person was, why she had grabbed me, and the reason for the volume of her voice at that moment.¬† It was like my very own personal Tsunami.¬† She went on to say”Where’s your Friend?” Now, I happen to have a lot of friends, but I just couldn’t understand why she was repeating herself here.

I went to the market with my friends, was supposed to be meeting them later at a restaurant. I had my cell phone in my purse, and indeed, I was alone, very happily so until this stranger accosted me.¬† “My friends are waiting for me at the restaurant, I have my cell phone, I can call them on my phone, see? This is my phone. I can text them too. Now, please let go of my arm and stop yelling at me like this.”¬† To which she replied “Oh no! you’re not Margaret at all! I am so sorry! You see Margaret looks a little like you and she’s really deaf and has Alzheimers.”¬† I replied, “Alright then, since I’m clearly not Margaret why did you grab me like that?”¬† My new grabby buddy replied,”You have a purple walker thingy and you walk funny…uh, I don’t mean funny ha-ha, but off balance and from the back I thought…”¬† I looked at her and replied, “So, we look alike then?”¬† Grabby sputtered “Um yeah you all Look alike kinda middle/older wobbly with walkers, I try to help where I can, I mean all of you handicapped people always need help, right?”¬† I thought I was going to have an aneurysm right there on the spot.

“First, I am a fully independent adult woman who just happens to live with a disAbility that is clearly visible. Second, when you put your hands on my* body, or my appliance that constitutes¬† assault. Thirdly, I do not knowingly have Alzheimers, but may become hard of hearing in my right ear thanks to your “intervention” thanks.¬† I’m going to see my friends now, so good luck with finding Margaret.”¬† I rolled away bruised but not broken hopefully some light has crept into the darkness of someone’s very small¬† mind¬† who thinks we* all look alike.

~Crip Out~