A list member posted a message in which he said he had vowed after the
holocaust that he would never be hungry again . I thought that statement
certainly put this latest list uproar into perspective. After all, we
were just dealing with words...'names will never hurt me'. But words,
hateful, cruel words, do hurt and verbal attacks can instill fear which
can result in us losing voices that we need to hear. I think that we
all, not only the list owners, but ALL of us need to be vigilant and
concerned about this kind of abuse. We ALL need to do what we can to
stop it. I agree that there a various interpretations and
misinterpretations of what constitutes abuse but we're all grown ups here
and have a darned good idea of what abuse is.
I have been asked by some members (some more than once) to respond to the
various analogies re "what the parkinsn list is". Here's my shot at
answering some of the questions.
Defining the List (as I see it)
My purpose in starting the list was the exchange of information about
Parkinson's. The list rapidly changed into the largest support group I
know. Besides its original purpose, the list has become a means of
feeling connected' to other members...a way of feeling we're not alone...
of making the road of life with pd easier to bear. It allows us to
connect with the voices of experience....just knowing that Don is still
Don after all these years of living with pd makes my picture of my future
a lot brighter.
I have always felt that we hear each other better on the list because we
can't see each other. Symptoms, age colour, race don't interfere. The
list knows no countries, has nothing to do with money...there's no
"what's in it for me?" But these same qualities mean our words are open
to misinterpretation. Since others can't see our wry smile or wink or
hear our tone of voice, a goal of keeping it "short & sweet" can result
in appearing abrupt. Also, the same word can have different meanings and
different shades of meaning to different people in different areas of the
world so care must be taken in writing and reading of the messages..
I have been asked which analogy is correct: Family? Guests? Bus? Boat?
Club members? How about: Brave new world? The medium IS the message? All
or none of the above?
Never, in the known history of this planet, has this kind of relationship
existed. We meet in a place that has no walls. We talk to our friends
whom we have never seen. We care deeply for other members whom we will
never physically hug. Folks, we're making it up as we go along so any
rules have to be flexible.
One thing for sure, I AM NOT the list; no one person is. We ALL are. WE
make it what it is - Camilla's obvious love & commitment to Peter; Judith
& Janet & Murray & all the others who scour the web searching for pd
information; the list (lurker) member who phoned me yesterday with the
information about Amgen's exciting research; John with his Parkinsaw; PAN
group urging us to political action and fund raising, Charlie & Bob &
Kathryn who offer their professional and/or first-hand experience. All
of these blend and flow and clash and laugh and cry....in other words,
real life.
Rules:
I prefer Janet Paterson's version "D"
Suggestions for Interacting on the List:
Be kind. Be honest. Share the time fairly....if you think you have
taken more than your share of the list resources, you just might have.
Keep it generally related to Parkinson's. Don't abuse the generosity of
the University of Toronto's free gift of the list. Don't include all of
the message to which you are replying. Use plain text' with no
attachments. Wash your hands with soap before you eat. :) In other
words, use the same common courtesy that you would elsewhere.
Privacy - Public Forum
The messages on the Parkinsn list may be personal but they are NOT
private...never have been. The illusion of privacy when using email is
just that: an illusion. I found this out the hard way. One of the
faculty members for whom I worked (and loved dearly) was murdered by her
husband. This woman & I chatted' via email a lot. Our discussions were
wide ranging from physical/emotional symptoms of women of a certain age'
to details about the private and professional lives of our co- workers.
She was one of my main supports when I was diagnosed and also when I
started this list. The police took all of our emails and some of them
were used as evidence in court. Believe me, I will NEVER forget that
email is not private.
Pig Controversy
While the pig' issue did get to be a bit much, I just want to say that it
also amazed me with the off-the-cuff, off-the-wall creativity of our
members. You guys should write a book!
Barb
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Barbara Patterson [log in to unmask]
HSC 2J22 905-525-9140, ext. 22403
School of Nursing
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