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~

disAbled Hierarchy

Being that I may or may not have been disAbled at birth,  (according to some* I certainly was) therein lies a tale.  Since my disAbility had not affected me, nor became evident until later in my life, I have a foot in two places in regard to what is known as the disAbility hierarchy, or spectrum.

My mother was prescribed DES (diethylstilbestrol) while I was in utero, which ascribed me with a series of problems on a cellular level.¬† Thus, I was technically born disAbled, although the pathology would not directly affect me until my late teens.¬† The other shoe would drop just before menopause, when¬† suddenly a nasty congenital neuromuscular¬† issue began it’s assault on my body.

Allow me to explain, there exists a disAbility hierarchy within our community. It is something that a few of us* are willing to acknowledge the existence of. It is insidious, it divides us among our peers. It is for the most part unacknowledged, yet does in fact exist.  There are indeed Crips who discriminate among Crips.

This is something I discovered over the course of my lifetime as my disAbility evolved and has caused me to lose my mobility.¬† Early in my adult life I was involved with a few “support groups” for people like me on the premise of finding support for ourselves in the “community” (being ourselves* and those who would ostensibly support us).¬† In those groups were occasionally people who lived with varying disAbilities within one diagnosis.¬† This* is where it becomes complicated. Some of us exhibited outward physical issues, and manifestations of our diagnosis and some did not.¬† At the time, I did not.

Being that I appeared “normal”though I was living a life filled with chronic pain, I was outright informed that I did not belong among the¬† group, although I shared a common pathology.¬† I did not use an appliance (yet) did not have many corrective surgeries (yet) nor did I have any visible physical deformities (mine are not visible).¬† I felt betrayed by what should have been a supportive environment.¬† I was not on the same point of the disAbility¬† journey, according to the other people in the room. Needless to say, I would never return for “support”.

Later in my life I screwed up the courage to attend yet another “support” group for disAbled Lesbians at the local GLBTQ Community Centre.¬† While the group was diverse and more accepting of who I was it soon disbanded and fractured off due to lack of attendance and funding from the community centre.¬† It could have been a positive and supportive space had the group survived past it’s inception, but alas, the disAbled hierarchy became apparent a few meetings in.

Now that I have aged and  I now rely upon mobility aids, (wheelchairs and other appliances) my disAbility is blatantly visible. I experience far more chronic pain and am losing function by millimeters each day.  I now need the supports in place that I sought out years before.  I  am approaching my senior years and am living at the opposing end of the disAbility spectrum.  I have become more active in my community Рvolunteering, sitting on boards, and have begun to involve myself in political action and change. I have yet to join any support groups, but if and when I do, I hope that the world has changed a bit and  people have become slightly more enlightened. I will not judge nor be judged by my peers on whether I am disAbled enough to be in the same room.  The way I see it, we are all in this together.

~Crip Out~

 

 

 

 

 

 

Ableist* Attutudes

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.

~Crip Out~