Disability gender, masturbating, scaring children, dogs and postmen plus wearing a bell

I have spent a great deal of time, many hours on the internet and found that while I am pretty sure my disabled life was different than others (Is that a TV show ‘My disabled life?’), it is REALLY different. I mean, there is a conversation about Gender for disabled women and that is important in the blogworld this minute. Except it is about clothing and I am thinking, “Yes but what about the huge feet you, or I get from Raynauds?” And how THAT looks in high heels – nothing says SEXY like purple/black feet without toenails! And then there is how many people have seen your vagina in the last month or two (I dunno, maybe I am just really unlucky in the autoimmune department, I think every doc on the south side of town has had a look now!), and if you have fungus growing on you. Then there is how much hair IS left on the back of my head now? And also if I knew that I would never heal on your arms, maybe I would have worked harder on not being a cutter earlier in life. Probably not, I just would have made more interesting patterns.

Plus the whole, “Oh look, you have peripheral neuropathy, welcome to having a pot!” Now that is welcome to female disability identity! It was explained to me about how it comes with muscle death and why it happened but I never understood exactly. Plus there is my tendency to be limited in clothing due to the fact that I literally swell up in heat like um, things that explode (hot dogs?).

Also, I bleed, out of my nose almost daily, out of my eyes a bit sometimes, pus is more common, blood out of my ears occassionally, out of my mouth a LOT – that irritates me. Seriously, what is worse than that trying to impress someone and finding you have a line of congealed blood across your two front teeth? Oh and the sores in the mouth from seizures in the night, and tongues that are not funny shaped (little bits here and there).

So apparently none of this happens to people with disabilities, just to me. Dunno, when people with MS are heat intolerant and they have water sprayed on them, do they dress up like I do with something see through for the occasion (they are my nipples and be proud!)? It seems not.

I guess the difficulty is in imagining the mundane ever taking precedence over anything with me. I go shopping. I talk to the guy selling his art standing outside the shop. I recommend Etsy. He wants to know how I am. Um, er, well there is blood in me and it goes round and round? Am I going to be annoyed at him? No. This is not an issue.

Sometimes customers will annoy me because they find me well, not so appealing to look at (I have my oxygen on, I drop things, I talk to myself), or they find my wheelchair in their way. So I ask them. “Oh, I’m sorry, is this in your way.”

And they give a tight nod.

And I say, “Yeah, I really wish we had a law that made aisles bigger….don’t you?” They keep expecting me to move.

Yeah. I take a hit of oxygen.

I like children, I wave to them. They wave to me. I explain how this wheelchair makes me fly. "I come down to the bottom of the hill fast!" my arm moves, "Chair says there, I go fly" My arm makes fly motion then falls.

Children giggle Parents look at me with great concern.

I explain to the chidren that my wheelchair can wheel into a volcano and out again just FINE. This impresses them. I pretend whisper to the parents “Just the chair though” – the children laugh, they have read children’s tales, they watch Disney characters die, but the parents pull them away.

Dogs like to sniff the chair. The owners are upset, they try to pull the dog away. I explain, “With the amount of stuff on my wheels and where I go, this is like a buffet of dog asses right here!” Then they REALLY try to pull the dog away. Odd. My flirting isn't working as I want it to!

I think Linda might be right about me losing my inhibitions. I guess I am not too worried about if that is a person sitting at my next job interview (I am applying still!). Because you know they probably will be and it will be a program for people with disabilities. And I will say, “I know you, you were the person who was scared of people in wheelchairs!” Yeah, that job is MINE!

I was told, in all seriousness, that I needed to carry a bell with me, and ring it to let pedestrians know I was coming. This from a woman I passed who was startled that a wheelchair was sharing space with her. I did NOT say that I didn’t have the plague….yet. In fact I was so stunned and wide eyed, I sort of said nothing at all. See, how is that for restraint. What type of bell I wonder, a fog horn?

I have found out that my manager complains about me to people, about my tire tracks. I suggest she buy me a hovercraft. Is this what other people get complaints about, that they leave tire tracks. I guess they do. I have the advantage and upper hand of knowing that people do not like confronting people with disabilities and so will say even more stupid shit than before. So I usually get them riled up to find out how much of a bigot they are, like, “well, I could drag myself but then there would be a piss trail on the floor” or “Yes, there is, good thing there is law huh?” People don’t like uppity crips because we are not equal, and sometimes people like me forget that.

When I went to buy flowers the owner CAME out of the store to tell me that the flowers under the awning (which were there to avoid the heat) were ‘not for me.’ That my chair was ‘too big to get in’ I was so, so dying to just go and lift the awning and go, “Oh look, it works this way TOO!” but as it happened the orchids were all the money I had on me. And it turned out that it was good the owner came out as there was a step to get into the store. 10 customers went in and out as I sat there, they stepped up and went in. Gee, if I can stand them, they should be able to stand a few tracks on the floor right? So I was about to drag myself to the counter when I found out that hitting the barrel holding the awning with my wheelchair quickly brought the owner to ME. Gosh, I love Canada.

In the post this month the Recreation and Integration Disability newsletter says that I am supposed to stare at the earth and remember how thankful I am that I am Canadian (no shit!). I think the people over at Rec and Int. are on acid.

This is my blog without a point or structure. It amuses me. My care giver time has been moved again so that it fits in better with the schedule of the company. It does not fit well with my care plan. This is not a concern to the company. I find it funny that I spent money to go to a specialist hospital and a top specialist who said, “this is what I know and this is what I don’t.” and after that my ENTIRE care is determined not by a GP or Doctor but an RN – specifically and RN whose duty before this was in the OR responding to, “Number 5 blade!”

“Yes Doctor!”

That is seriously who is in change of my care plan, of a degenerative terminal disease. Of which she doesn’t want the medical notes. Hmmmmm.....

The phone people at Beacon think I am a “hoot” because one night worker scared me so bad I couldn’t sleep, as they were wearing a hoodie, in the dark, calling my name at the end of the bed to wake me for my pain pills. It was DEATH come for me! “Elizabeth!......Elizabeth!”

“AHHHHHHH!”

They asked me what I wanted to put down as the reason not to have her again. Personification of Death? No I said she had a problem touching me. Which is true, a lot of the care givers, once they know I am terminal and they see that bits are falling off don’t want to touch me, because, it is like AIDS, I think, “WHO KNOWS how you catch it.”

This will become difficult as I need someone to wipe my ass. The trick with having limited feeling is keep the eye on the prize, or you end up with early descent and get the vagina. DAMN! Not again! This is bad as it increases a chance of UTI. I do not back wipe as I can’t lift my ASS off the seat. And again, smears on the top not so fun – not when I can’t feel them.

Hmmm, what is left? Well, I like the postal guy, he has a very polite knock. He is cool. Sometimes as it takes me so long to transfer I will wait pretty much naked by his bag stand as I am on the top floor and he returns to get it. He likes to see me. I hope it is the pert nipples and not just that he is getting rid of a package on a hot day.

On day he knocked while I was masturbating. I stopped. But he kept knocking. He said later if he can hear someone inside he keeps knocking. BUSTED!

That’s all. I am trying to figure out why other disabled writers have more interesting...and in depth writing. I have determined it is because I am shallow. I am scared of death with a hoodie at the end of my bed, I piss people off for fun, I masturbate (or try) and I find being told I need to ring a bell ON a side walk (I am not a bike!) to warn people “The CRIP a’coming, take the ‘bains indoors, the CRIP a’comin!”

Shallow!