Re: In Praise of Lyme Activists

a_weisman_at_yahoo.com
Date: 12/29/04 

Date: 29 Dec 2004 11:42:10 -0800

GregGerber@hotmail.com wrote:
> LDA is considered by most the major Lyme disease patient advocacy
> organization, and Pat Smith is its President. There is a board of
> directors that oversees the organization.

One I don't know how you reach the position that LDA new jersey is
"considered by most the major Lyme disease patient advocacy
organization."

Sounds conclusive, but that is based on what?

I would still consider LDF first and foremost. Most people know LDF and
Karen Forschner, NOT lda or "the pat."

How can we tell? Well Karen's the one who still gets called to be on
Real World or Today show and for quotes when major things happen. LDF
has books and resource materials widely disseminated.

Sure LDF has FAILINGS and I put that in caps deliberately. And sure LDF
made mistakes by not creating umbrella groups as LDA finally did
although the LDA "affiliates' aka "minions of the pat" are few and far
between and one really cannot say that LDA is a national organization
and claims to the contrary based on tax standards are false, but LDF
is.

Being pushy and claiming credit for everything doesn't make it true.

Again, IF LDA is Lyme survivor, that is as a result of scorched earth
tactics by BOTH and it is a HUGE disservice to Lymeland.

And when karen is done with her current endeavor she might well return
to the thankless job of Lyme leadership, who knows?

Honestly in my view they ALL should be FIRED!

Overall LDF did a lot more good than it did bad, and LDA did a lot more
good BTP (before "The pat") than since.

HOWEVER the lda BOD is NOT truly independent nor is it in any way
accontable. They are all hand picked by "the pat" and are all yes
people. None of them has EVER DARED to question "the pat" much less say
"NO" to anything she asked of them.

Unlike many BODs they truly play a very limited role and serve at her
pleasure rather than the other way around.

In other words, this is totally and utterly meaningless in this
instance.

>As to what happens inside
> that board, I have no knowledge whatsoever. I don't think these
> positions are, in general, voted on by everyone with a given disease
in
> other disease organizations, are they? If so, I am sure you will
> enlighten me. GG

No perhaps not. However, "the pat" and other Lyme "leaders" are
singularly unaccountable and refuse to be held accountable FOR
ANYTHING.

Not only that, and this is the real rub, they do not encourage or
welcome input of any sort. All ideas not their own are seen as "threats
to their turf" rather than possible constructive ideas that might help
advance the cause.

Kathleen was right about one thing, and pretty much one thing only.
"The pat" has hurt the cause MUCH MORE than she has ever helped it.

Taking credit for EVERYTHING doesn't mean it is deserved. Taking credit
and eschewing all blame is simply galling and that is the style of
"leadership" that we're talking about. What really gets me beyond that
is the element of "dishonesty" or you might call it "spin" that goes
on. Clear defeats are termed successes. Credit is sought and claimed
but no blame is accepted--the answer to defeat and blame other than
saying it is something other than that is the refrain about good
intentions and hard work (reminescent of George W Bush in Debate 2 and
all his "good people working hard" nonsense. Well I guess it worked for
him too!

But it is bull***.

What is unique about what passes for "leadership" in Lymeland is that
it has no legitimacy and seeks none but still purports to speak for
all. It is the classic leadership mistake of a cult of personality
which elevates the personality of the "leader" above the interests of
those that he or she or it claim to lead.

And time after time the petty turf wars of "the pat" vs "the karen" and
the two of them vs anyone else have hurt the Lyme community. All the
attendant nonsense is damaging too.

They surely do NOT speak for me or most people that I know.

And I really am sick of the old refrain about their hard work and good
intentions. LOTS of people have worked hard and had good intentions in
this cause and have been attacked nonetheless. And at some point
results do matter not just hard work and good intentions. The point at
which I don't find the old hard work good intentions refrain meaningful
is when mistakes are repeatedly ad infinitum and outside help and ideas
are eschewed simply for the sake of the leaders' ego and that is the
case and has been time after time after time, at least in my
observation and in my opinion and MANY share those observations and
opinions.