In response to the recent posting by Jim Cordy on the Parkinson's Patient
Congress and in concert with the thoughtful and articulate postings of
Charlie Meyer, Ron Barbar, Dolores Gross and Elliott Haynes I want to weigh
in on the issue of Coordination, Coalitions and Unity.
As always I respect Jim's candor and his ability to listen and
synthesize
input from others. I know he and I have the same goals and motivation, and
I know he and others are rightly impatient, but I differ on tactics mainly
because
I have a different view of what happened in the past and what is needed for
coordination. I feel confident in my view which is derived from my PhD in
Organization Behavior and 25 years working with interorganization
coalitions
as well as my firsthand experience working with coordination and coalition
efforts for the PD national policy agenda. I have been involved with Jim
every
step of the way. I only point out this background to underline that my
position is
well informed.
I prefer to use the term "coordination" to describe the workings of the
steering committee rather than UNITY by Jim's definition. Neither he nor I
seek to
reorganize the current structure of the National organizations, no matter
how
desirable that would be. We do seek cooperation on common public policy
goals
for the PD community, such as appropriating $100 million for research
authorized
by the Udall Act. Unity here would be great and it is a goal, but all we
need is enough
"coordination" 1) to give an appearance of unity to the outside and 2) to
more
efficiently prioritize and allocate our limited resources.
In spite of the fact that the national organizations couldnt agree on
letterhead and
they dont really want to coordinate much less be unified, THE STEERING
COMMITTEE WAS SUCCESSFUL, and it made a significant contribution to our
success on the Udall bill. I would speculate that if the Steering
Committee didnt
force coordination on the organizations we would not have passed the Udall
bill.
Whether this is right or wrong, the point is the groups dont have to like
to work
together, and they dont need a single letterhead or unity. They may need
to be
forced, but they MUST coordinate minimally. When I see the unity cup a
third full,
I call that success and Jim was the major force behind the success (that's
why he's
called the general, but as general it is necessary to lead the troops
FORWARD).
Maybe we'll never get the glass to even half full but we cannot afford to
go back
toward empty where we started.
I believe the patient congress should be a force toward unity not away from
it. As an NPF exclusive, I believe no matter what the other merits, it
works
against unity and makes it harder to coordinate, and therefore it will be
detrimental. If and when NPF becomes dominant then create an NPF
congress, but for now I see an NPF as one of three, all of which are needed
to
accomplish mutual goals for the PD community.
Recent misunderstandings and disagreements have drained the cup from a
third full to maybe half that or less. This is a damaging set back when we
need to be going after appropriations. I favor the first of Jim's two ways
to achieve coordination and movement toward unity:
1) PWP band together and demand it [i.e. the Parkinson's Patience
Congress with all the national public policy organizations as
sponsors.
(or publically refusing to sponsor it). Otherwise, its a force
against unity.]
2) One organization grows and become dominant. This may achieve unity
in the long run but now we need resources from all three
organizations.
Yes, to me Jim's hypothetic announcement of the Patient congress without
the NPF
emphasis and with a neutral administrator says what is truly needed.
I think that we delegates must insist on publicly inviting the others to
cosponsor the congress. If PAN and APDA dont accept, NPF has not
only been community minded, but the others have been too short sighted
to recognize the importance of the grass roots leaders in our community's
new found political muscle. Under these circumstances NPF is strengthened
& I will fully support this. If the others do accept, the community wins
by
having one vehicle for at least minimal coordination (which is essential to
maintain our position of strength in the appropriations battles). they
will
not have to put up as much resources if the others chip in. As long as
NPF doesn't back out they win both ways by working FOR THE PD
COMMUNITY. {as an aside, notice now all three groups are posting
e-mail that looks like they are in charge? What's going to happen when
the troops get 3 sets of marching orders, and isn't it a waste of
contributers'
money to have three separate commanders}
Locally in the National Captial Area, Susan Hamberger and I have initiated
planning for a jointly sponsored "party" (with APDA, NPF, maybe PAN) to
celebrate the Udall bill enactment -- a demonstration that we can (and
MUST) work together.
Perry Cohen, Washington DC
