Jim - I have been unable to reply to the cc list you sent to - a technical
problem I suspect, THE REPETITIVE MESSAGE WAS THAT THE LIST WAS MALFORMED -
so I am using listserv to get through to you in Washington. I hope someone
will pick it up and get it to you if you don't have immediate access
yourself.
***********
Thank you, Jim, for the opportunity to comment on your "Who speaks for the
Parkinson's community?" draft proposal.
A "steering committee" is a fine idea. And, the people you have selected
are either representatives of major PD organizations or are "veteran
advocates." Their credentials are unassailable.
This committee is an ideal venue for topical discussion and policy review
on Udall. Any and every aspect of the bill and related topics could be
covered. Through "listserv" or other medium, our community could stay
informed of, and even participate in, the committee's efforts to pass the
bill.
Considering the range of topics, and the issues involved, however, the
committee's representation of the Parkinson's community in a "unified"
position on every issue may be impossible. But, if there is an occasional
division of opinions among the four organizations and four individuals,
that is fine - unanimity cannot be expected on each issue.
Giving the committee an "empowerment" to represent the entire Parkinson's
community also may be asking too much of the thousands of Parkinsonians
(sorry, Joan, but if someone from Santa Rosa is a Santa Rosan then ...) who
are actively involved, along with loved ones, in this campaign. The right
of the individual to express his or her opinion is vital, indeed impossible
to snuff out. And, usually, none of the four organizations are going to
capitulate to a majority vote when their position differs significantly
from the committee majority.
So, as issues are discussed and positions formulated, why not publish the
position statements of any member, organization or individual, wishing to
publish one? Rather like the Supreme Courrt, to draw a parallel, where
individual justices may write concurring or dissenting - or mixed -
opinions, and still remain on the Court.
This approach will not provide the committee with a lock-step, passive and
obedient following, but it will allow a full and free discussion, full and
fair representation of each member's position, and greater public
understanding of what is happening in this most important battle. As those
who are not participating directly within the committee read the results,
many will respond, providing even more substantive opinion and information
the committee can use.
Will this potentially multi-opinioned creature cause havoc and confusion in
the Congress? Not at all. Congress seldom votes unanimously, even on
seemingly clear-cut issues. Our community should not be held to a higher
standard than that demanded of those who judge it.
Bob Dolezal
