[Namron] One more try....

Jennene Stanley mooharpist at cox.net
Wed Sep 28 11:59:16 PDT 2005

Now that my eyes are finally cleared from that chemical spill that happened at the airport. Fun fun...

Gotta make some comments..... then I am going to shut up and get on with what I really like to do, Play!

>>>>....In our non-SCA daily life, we have to deal with harassment from the insurance company's private investigator, the insurance company refusing to pay for prescribed medications that he needs,......<<<<<

Welcome to the wonderful world of have a disability. Been there, done that.... sill doing that and don't expect it to stop anytime in the near future. It's just one of those things you learn to put up with just like putting up with traffic, electric bills, and the mortgage. Everyone, whatever ability, has their own set of "pains in the patootee" that come with living they have to deal with. That's life.

<motivation speaker mode on>

Some have said to me "Oh, I wish I had your strength" or "Tell me how you did it". Well, here's some of it. I'm not gonna sugar-coat it to preserve delicate sensibilities. This attitude I acquired did not come from sitting on my butt in front of a computer reading emails and indulging in electronic pity parties. The *personal* struggle to come to terms with a disability is something that everyone do for themselves. No outside laws, groups or guilds is going to do it for you. I feel that it is really a personal inner battle that you have to go through to become self actualized and at terms with what fate has dealt. Your friends and family can only help and support from the outside. But in the dead of night, when you look in the mirror and wonder "Is it really worth it?" Only, and I mean only, THAT PERSON in the mirror can make that decision. For the recently disabled: It's a hard enough road with out putting in your own obstacle course. Take what you have and start from the bottom, build your foundation, then work your way up. Sure, like everything else you are gonna fall on your butt. The way you get up and deal with that fall can make or break you. It's like a horse, get back on. *SHUT UP* about how much pain you are in. All that accomplishes is that the pain is the only thing you are thinking about and thus, it doesn't go away. Simple as that. Look for and embrace challenges because that is the PATH from having a disability and that disability having you.

 <motivation speaker mode off>
(And yes, I have done a lot of motivation speaking for the National Arthritis Foundation, C.D.C. and other groups and if you want the whole spiel, talk to my agent) 

>>>Unfortunately, the term "reasonable accommodation" seems to be open to debate.  I personally don't consider it unreasonable for an event coordinator to do the research to choose a site that doesn't
destroy vehicles, allows someone in a wheelchair to actually get into and use the bathroom, and has paths that don't have gullys that endanger the able bodied and prevent someone in a wheelchair from even leaving their site.<<<

Well, when you live in Oklahoma and want to commune with the outdoors on a low budget, it is. The fact is that we live in a state with very few sites within the driving distance from a home group, (to make multiple trips from storage buildings, ect), within our price range (under 10 bucks a head or so) and willing to rent to us. (alot of these camping sites are owned by religious folk. I'd rather deal with a gully then someone trying to force their moral beliefs on me)  When I started playing here one of the main sites was Marlow (with NOTHING). We brought everything. If you needed it, you brought it. (I still remember Mairin's personal porta pot thingy she had in her tent). I couldn't really handle this kind of camping despite the help from my friends. But instead of complaining and insisting we go somewhere else or else, I came up with a solution. A camping trailer. (which we will be selling in the spring to get a new, larger one). I built a tent to hide it and have been living in it at events ever since. There are some really cool ones now set up for AT toys that would be perfect for people needing access. Yes, it can be hard to get it in to site but we deal. (Brad is a wizard at trailer parking.) It is possible to get around. I've done it in my motor scooter. (hey, can we have races at Beltaine?) You have to sit down and put together personal strategies to deal that don't overly burden others.  I don't particularly like Cimmiron either but I am going to play the game with the cards that are on the table while looking for something better.

Some kingdoms don't even camp. I went to a event in Caid that was in a hotel. It had more of the feel of a SF Con then an event with the room parties and such. I had a lot of fun (even got to sit at the high table and participate in a gentille food fight). But it was expensive. The hotel catered the feast (they have a problem with folk bring in their own food) and you had to get rooms...ect. However fun (and accessible), I know I couldn't afford it on a regular basis. (around $300 per person for BASICS not including transportation.) 

My slant on the ADA

I have had to function this world before ADA. When I was a child I wanted to learn to play the violin. All the in-house teachers thought I would be "setting my self up for disappointment" (and you don't even want to know how many time I heard that line growing up). My parents got into some faces and I got my violin lessons. Now I am a professional musician. But this did not come about because of any special consideration or special equipment. I learned and earned my place in music groups. An important lesson I carried into the rest of my life. What I believe the ADA is a mechanism that provides accessibility to the same experience and opportunities. It is not a shield to hide behind if you can't hack it. As for sites, *everyone* trips over those same gullys, gets quagmired in their camping site and gets their cars/SUV s torn the hell up. But we chose to subject ourselves to the same experiences. And it make for great stories around the campfire.

I could go on ad nausem. I simply do not have the time. I hold down a job, keep my family going and have a ton of stuff to do that doesn't involve sitting in front of a computer all day. We have an event coming up and I gotta get ready for it. Feed me some Payment at Protectorate and we'll talk 


Jennene Stanley
  "There is nothing to fear in the dreaming, only that which we bring           with us."
			      -"Atonement" Babylon 5
Email: Mooharpist at cox.net 	website: www.mooharpist.net

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