Ivan 'n All...

I'm on the run to catch an early morning train to San Diego as I'm spending
the Thanksgiving holiday at my daughter's home, but felt absolutely COMPELLED
to take a moment and respond to Ivan's heart-touching message.

You touched the core of the  issue in this, m'friend... our invisibility needs
to stop!  And if one puts  a face on the individual victims of this disease,
PD WILL be known about 'cause Parkinson's PEOPLE will be seen.

While I'm on the train and over this weekend. I'll think on this topic and see
if I can come up with any ideas, as I feel we might just be on a roll
starting.

Thanks for the wonderful impetus, Ivan!!!

Barb Mallut
[log in to unmask]

----------
From:   Parkinson's Information Exchange on behalf of Ivan M Suzman
Sent:   Wednesday, November 26, 1997 3:44 PM
To:     Multiple recipients of list PARKINSN
Subject:        Our Faces Unmasked

^^^^^^WARM GREETINGS  FROM^^^^^^^^^^
Ivan Suzman  48/10         [log in to unmask]
Portland, Maine   land of lighthouses   35 deg. F sunny-for a change
***********************************************************
Dear Listmembers,


    Due to a long winter's night by the woodstove, I've had the
opportunity to think about some of the threads and currents of thought
and feeling going on here on our World List.

     Frustration that we PWP's and "GAP's" (are we "GAP's" on the
French-speakers "Parkelist" - Gens Avec Pd?) are NOT SEEN by the people
with political money, nor by the general public,  is an underlying
current.

     So is the feeling that Parkinson's has been projected as an
old-person's terminal disease, creating a stereotype that is completely
inappropriate.

     There is an underlying nervous coexistence with our PD drugs, and
surgeries.

     Age-ism, despite the Grey Panthers, is rampant in America's
youth-oriented society.  This attitude makes it hard for us PWP's to
break the stereotype. The situation reminds me hauntingly of the
md-1980's, when anti-homosexual attitudes stereotyped AIDS as not
affecting women and children.

      I know how agonizing Parkinson's is, believe me.  With AIds, it was
the recognition in about 1985 that the HIV virus was fatal virtually 100%
of the time that shocked the Cure AIDS movement into action. And it was
the willingness of PWA's afflicted by Karposi's sarcoma--the horrible
purple skin cancer-to be SEEN publicly, that woke up the Center for
Disease Control in Atlanta. Anyone  seen the movie "And the Band Played
On?"

      We need to show the SHOCKING truth about parkinson's. The more that
we are seen at our WORST, the grater the outcry for money, research, and
education, and aid to families.

      About March or so, we were talking about going on the Oprah show,
on 20/20 with Barbara Walters, or wherever we could get media exposure.

       Stan had tried to get us on the Oprah show--and now that he is a
Hole-In-The-Head Gang member, maybe he can, along with others PUSH to get
us on Oprah.

        When I posted the "Pictures,Pictures,Pictures" message in
October, the subject was HOT on our LIst.  Everybody had something to
contribute about seeing our faces.

        Our faces. Our faces.  That is what is NOT being seen by the
public. Morris Udall's face, lying in a hospital bed, extremely ill.  My
face-pierced ear, blond hair shoulder length, short dark beard.  The
faces of all of you.

         Has anyone besides me ever seen PICTURES sewn into panels of the
AIDS quilt?  The human face is so powerful, even after the soul that
moved it has passed from this Earth.

         So my message to ALL of you is to PLEASE  work to get our faces
on the media.  PLEASE, caregivers, don't hide the faces of your loved
ones.  Rather a disfigured, or pained, or sniffly or drooling face, or a
masked face,  than none at all.

         The Parkinson's Action Network's newsletter has now brought me
my first pictures of Dale Severance, Jim Cordy, Margaret Tuchman, Barbara
Schirloff and Joan Samuelson.  I finally have images of human faces to go
along with e-mail and surface-mail messages.

           If I were convening the Congress of the PWP's/GAP's and their
CG's, my highest priority would be media exposure.  Let's see our heroes
and she-roes (heroines) like Lonnie and Muhammad Ali,  and, let's also
see the faces of the rest of us.

           If I were in charge of a budget to create visibility, I would
gather together a PWP and CG crew-and the FACE PROJECT would be launched.


            Well, gang, I truly hope that there is enough to chew on in
this post that it may help us all to be "Invisible No More."  I hope the
Americans have a warm Thanksgiving, full of hope, and to the rest of the
List, I equally wish you a season of hope.

            Looking forward to the discussion that I hope this message
generates.

^^^^^^WARM GREETINGS  FROM^^^^^^^^^^
Ivan Suzman  48/10         [log in to unmask]
Portland, Maine   land of lighthouses   48  deg. F clouding over for more
snow...
***********************************************************