^^^^^^WARM GREETINGS  FROM^^^^^^^^^^
Ivan Suzman  48/10         [log in to unmask]
Portland, Maine   land of lighthouses  32   deg. F freezing rain
***********************************************************
Dear friends,

Does anyone want to be on a TV show on Parkinson's, in Portland, Maine,
USA?? Read on, folks, but first, let me thank Jim Slattery of Australia
for sharing his pain and anger at our Invisibility........I have quoted
him below....


Somehow I found myself nodding and saying yes,yes, yes, this stuff
happens,  to every insensitive act of avoidance that Jim has experienced
and identified for us.  Wow, Jim, you REALLy got me in my gadfly
sensitivity spot!

I HATE being marginalized and excluded and ignored and assumed to have
dementia , especially by YOUNG folks my age-I'm 48-well, for PWP's that's
hardly more than a pup.  I HATE being underemployed or unemployed and
left like flotsam and jetsam on the waysides of the "busy" world out
there.

As if WE PWP's aren't "busy!"
Or adequately intelligent.

C'mon, world, WAAAAAAAAAKE UP!


Anyway- Diane Atwood  of Channel 6 - NBC-TV -called me yesterday.  It was
on the answering machine.  I responded today and GUESS WHAT FOLKS??  She
wants me to be.on the WCSH--TV show she is preparing on Parkinson's. It
allows 3 guests.

Oh, dear, Ivan the gadfly comes OUT of the closet to put a FACE on PD!!
SO I said "yes" to her.

I told her all about the List--she was so excited by the end of our talk
that she even asked me for my (unprepared) thoughts about the SCRIPT of
the show.  So I rattled on about brave folks like Romona, and the April
PD Awarenss Month proclamations,  the pitfalls and limits of pallidotomy,
and the struggles we have with  Mirapex, and the ROLLER COASTER of hope
and depression we ride. And of course, the UDall money-HOW would YOU
spend  100 MILLION dollars to cure and treat PWP's and to help their
families???

And, Diane was absolutely fascinated with the List.  Now here is an
opportunity for List Power.

ANYONE on the LIST want to fly to Maine and join me?


Ivan the gadfly




On Wed, 7 Jan 1998 11:06:12 +1100 Jim Slattery <[log in to unmask]> writes:
>Hi folks,
>
>I have discovered another aspect of PD - invisibility!
>
>Yup, as PWPs we are invisible to some of the populace.
>
>I had long suspected this, as at meetings, dinners, etc., I
>would talk, and no-one would hear me, or I would stand up,
>wave, dance on one leg, or do whatever was necessary to
>attract attention, and no could see me.
>
>The real proof came when, because of a heat-rash over
>Christmas, (here in the Land of Oz, it is frequently in
>excess of 40 deg C - 105 deg F - over the holidays) I shaved
>off my beard and mustache of 20 years standing, and NO-ONE
>NOTICED!
>
>I was mainly out with my wife, helpmeet and primary carer.
>I think that people noticed me as a sort of Jim-shaped blob
>appended to her, and figured I must be her husband.  This
>occurred even with close friends.
>
>Seriously, I think that people with disabilities,
>particularly those that make people embarrassed, or which
>remind them of their own human frailty, are seen
>"out-of-focus", if at all.
>
>If, added to that, they have difficulties in communicating,
>eg, shaky handwriting, slurred speech, etc., they are
>further shoved to the periphery of people's minds.
>
>If it weren't for UN "Year of XXX", and "National XXX
>Day", we would become completely marginalised.
>
>Of course, *you* can read me, but you can't SEE me, nor
>HEAR me.  If you could, I wonder how "visible" I would be,
>allowing even for your great caring and empathy?
>
>How "visible" are PWPs to carers of long standing, to
>relatives, friends?
>
>I have made it one of my New Year's Resolutions, to REALLY
>see and hear ALL people, not just the more visible ones.
>
>(Now, I wonder how invisible I am in the Bank?  If I
>just... )
>
>Jim
>