In a message dated 11/02/1999 5:54:30 PM Eastern Standard Time,
[log in to unmask] writes:

<< Much to my yet stated delight and acknowledgment, Trisha's friend, Betty,
 (whose brilliantly articulated disagreement with Trisha over the matter of
 Tribalism further encouraged my recent declarations), openly acknowledges
 that we are here to participate primarily, though definitely not
 exclusively, in matters Cerebral Palsy.  Betty seems very attuned and not at
 all excluded or offended by the open and frank admission that what binds us
 and hopefully fuels our pride is our collective involvement and identity.
 That seems to me to indicate a shift from the personal to the political
 aspects of Cerebral Palsy.

 Being part of a Tribe is by definition exclusive--that doesn't mean the
 Tribe cannot include others, it means only that experiences must be
 acknowledged within the Tribal frame of reference.  I am 58, Trisha 40, >>

I have to take exception to what Steve said, because Trisha is actually 39.
Ha!

To be honest, I didn't mean to direct anything I've said to date toward
Trisha.  As a matter of fact, I think we're in the same camp on the concept
of tribalism.  I'm not sure which post you're referring to Steve, but I use
the word "tribal" often so I'll take this opportunity to define my meaning:

I often say that PWDs need to be tribal, regardless of their type of
disability.  I don't mean that we should run the streets carrying torches
like a mob carrying torches (although it would be a kick), but I mean that we
should be prepared to take a stand for the rights of all people with
disabilities.

When a downs syndrome issues come up, I think it's a matter for all of us to
know about.  A child recently died awaiting a transplant he was never going
to get.  He had down's syndrome and he wasn't put on the list.  There is an
operation that can be performed on down's kids to "correct" their down's
facial features.  As far as I know, there is no medical reason for the
surgery, yet parents of down's kids are sometimes given this as an option,
and they sometimes exercise this option.  My question is this: are these
scenarios for the concern of down's families only?  Or are they of concern to
all of us?  The real message is that people with disabilities (or maybe
developmental disabilities) are not as valuable to society.  We don't want
down's kids to look like they have down's, so we're willing to allow them to
undergo painful and medically unnecessary surgery.  That frosts my figurative
spiracle objects more than any abuse to the disability community I've heard
to date.  Right now I'm trying to find out more information about this
surgery and how to publicize my feelings about this to the disability
community if I can competently substantiate what I've learned so far.  I'm
sure it's for all of us to say "We love down's kids and that's the way they
are supposed to look!"

 My life is of less value to society now.  I sure don't like that, and I've
come to my tribe for caring and love (to get my wounds licked).  You are not
my specific "sub-tribe," but you sure as hell are my tribe and I need your
help sometimes.  I wanted to die for months -- it was the most hell I've ever
known.  I lost my community and jobs, and wanted to die.  I've never known
that kind of pain before.  I'll never be the same again -- never.  Man, I
don't even know how to tell you how much I wanted to die.

But now I don't -- seriously.  But doesn't that pain ring home for some of
you?  I'll bet it does, and that kind of stuff is our common denominator --
that's the stuff of which tribes are made.  AND...we are so much stronger
behaving like a tribe.  We also look stronger to a world who, regardless of
disability rights legislation that comes to pass, still largely sees us as
"less."  They see our bodies and they equate that with "less" -- it screams
at them still.  It's better than it was, and tomorrow will be better than
today, but in the morning some down's kid is still going to have a surgery
that he doesn't need.  Tomorrow some guy with the end stages of ALS is going
to be relegated to a corner in an institution home without the tools to
communicate with because he isn't Stephen Hawking and his family doesn't have
the money.  Some nursing home orderly is going to hit an elderly woman in the
face because she had an "accident" that he is going to have to clean up.

Having said that, I would say that I understand the nature of this list.
It's called C-PALSY.   I know this is the list for people to talk about CP
issues.  I don't want to post when it comes to that.  If there is an
opportunity to post something that I think is useful, and general to the
disability community, I'll post (as evidenced by this little ditty).  If I
knew about certain things about CP based on my association with a relative
who had CP, like my child or sibling, I might be inclined to post more often.
 But I feel welcome to express my opinion about general disability topics.
You'll notice I didn't put my name of the list for the get together though.
I don't have CP -- maybe I shouldn't, I don't know.  Hell, that might be your
big chance to get together and talk about me when I'm not listening -- HA!

Can you believe it?  I'm shutting up now!  Whodathunkit?
Betty