[Namron] One more try....

Fri Sep 30 14:09:32 PDT 2005

I am happy for you that your disability is minor rmough that you are able
to hold down a job.  Some of us are not so lucky. 

Some have much bigger mountians to climb that others.  And sometimes we
need a little help to make our way.  NO, DO NOT WHINE ABOUT IT.  but
don't belittle someone elses problems until you have walked a mile in
thier shoes.

And just because you can not see the disability, does not mean it does
not exist.

flame off

joy

radei

  ----- Original Message -----
  From: "Jennene Stanley"
  To: "Barony of Namron"
  Subject: [Namron] One more try....
  Date: Wed, 28 Sep 2005 13:59:16 -0500

  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.

  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
  b!
  ottom, 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.

  (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 l!
  iving 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 Anya -- 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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