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Today is Monday, October 27th, the 300th. day of 2003.
There are 65 Days left in the year.
There are 58 Days until Christmas and
Today is . . . Wicked Witch Day.
On this date . . . US Senate Ratified the Louisiana Purchase (1803)
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by Malin Lowenadler-Shadel
Not knowing that I
have lived with peer support for my entire life, I hesitantly began to
participate in a support group for people who have sustained a traumatic
brain injury. After learning what the group offered, I slowly pieced
together proof of this: our lives have support groups holding, pushing and
carrying us through what we call life. My initial hesitation disappeared.
Think back to school years, whether that is high school or college, we
basically made it through the education thanks to the people around us, who
supported us by being our peers. Activities in which we participated,
scholastically or athletically, were groups of people, our peers, who shared
our similar interests. During these activities, we took part in supporting
our peers with feedback, cheering and suggestions, which, in the end, helped
the individual succeed. This is exactly what has happened, and continues to
happen as I interact with the Pittsburgh Area Brain Injury Alliance, (PABIA)
and the other people who have also been dealt the TBI card of life. We all
have peer support groups, whether it is our friends, family or co-workers,
we have people we can talk to who share common interests. The Brain Injury
Alliance is like that too-people who share common interests helping each
other solve problems.
What we do, say and think all help us to figure out who we are, why we
are and maybe even where we are going. The people we choose to share our
thoughts with are chosen for a reason; usually it is people we feel
comfortable with and feel that they will understand where we are coming from
within our circle of unknowns. Better yet, these same people may have the
needed insight to feed back to us which in turn may brighten our way.
It is quite awesome how we come in contact with the people in our lives
who will aid us along the right, or better, path.
The Webster's New World Dictionary defines 'Activism' as "the doctrine
or policy of taking positive, direct action to achieve an end, especially
a political or social end", and the Oxford English Dictionary defines an
'Activist' as "an advocate of activism"1. The Random House Dictionary
furthers the definition of 'Activism', defining it as an "involvement as a
means of achieving political or other goals, sometimes by
demonstrations, protests, etc."2. Thus one can see activism as an attempt
to change. This could be the changing of a government's laws or a
public's attitude.
ADVOCACY
Seeking support for the rights of a person or a cause. A type
of problem solving designed to protect personal, and legal rights, and to
insure a dignified existence.
ADVOCATE
A person who pleads another's cause or one who speaks or writes in
support of something.
Question: Are you an advocate for anyone or
anything?
Feedback on the Terri Schiavo Feeding Tube
Action Alert Posted 10/22/03
Editor’s note; I have
not followed this case closely. I do not know why Terri's husband wants to
disconnect her medical life support. Is it because he believes that she is
suffering? Or is it so he can move on with his life?
Beside the obvious struggle for a person’s right to life, one of my concerns
here is about the language that is being used in reference to this person,
Terri Schiavo. Human beings are NOT VEGETABLES! Let us go about advocating
for and demanding a change in language within the medical community, news
media and entertainment industry. How can people who call themselves
disability rights advocates continue to permit and use this debilitating
language? A person can be comatose or non responsive. Vegetables are non
responsive and something we make salads from. This blatant disregard for
humanity must stop, for it is at the core of what makes this issue hot. Any
language used wrongly to refer to human beings is demeaning and creates
barriers in the minds of others. If a person becomes less than
whatever it is that we believe they should be, we cannot scrap, junk or kill
them. However, if they can be labeled and considered to be a vegetable,
then that makes it easier for society to run them through the in-sink
disposal when they become non responsive or comatose.
Will it stop there?
I think not. Will we discard people who are non responsive before giving
treatment? Perhaps, if the insurance industry latches onto this one. Let us
consider that. Half of the people whom I’ve met through the peer support
movement would be in graves right now under those circumstances. It is
easier to discard a depleted or damaged vegetable. Let us learn to use
person-first language. Terri is a unique individual human being and not to
be confused with a carrot, stalk of celery or head of lettuce.
My family and I once faced the decision to agree with the medical
professionals' decision to stop life-sustaining medical treatment for a
loved one. It is a deeply personal issue that should not be dragged around
like a freak-show. My sister, 42 at the time, was scheduled for heart
transplant surgery. While waiting for a heart, external pumps were connected
to her arteries to circulate her blood. Because of the increased risk of
clotting posed by these mechanical pumps, she was given large dosages of
blood thinning medication. The blood thinners caused a massive "bleed" to
occur within her skull which completely destroyed one side of her brain and
nearly half of the other side. Because of this acquired brain damage, she
was removed from the heart transplant recipient list. She had no chance of
recovery. I stood with her during the last 45 minutes of her life after her
life support systems were disconnected. Many things raced through my mind as
she passed from here to what I believe is a much better place. One thing
that haunted me was that I questioned the morality of this decision. For my
sister, I believe it was right. Her suffering was ended.
Throughout my years of involvement with the Peer Support movement, I've
had the pleasure to meet countless people whose loved ones ignored the
conclusions of well-meaning medical company employees. My best friend is one
of the people who came back from what was deemed to be a "vegetative" state.
Even when the prognosis for recovery was bleak, the love and bonding of
family have had powerful effects upon the quality and quantity of life lived
post injury. Often, the true unsung heroes are the moms and dads whose
undying love sustains the person. The love and care they give aids the
person in their recovery journey to become productive members of society who
enjoy a meaningful life. That is not to be underestimated!
I believe all human life is sacred. As such, I believe we are morally
obligated to use whatever tools, strategies, equipment and technologies are
available to sustain life. Otherwise, human beings become one more
disposable item in our society of "new and improved and disposable"
everything. However, as in the case of my sister, when all hope is gone, let
us have compassion for the individual and alleviate their suffering.
From my limited understanding of the Terri Schiavo case, all hope is not
gone. If her parents want to continue caring for her and her husband does
not, let them all do what is right for Terri. Husband-move on. Mom and
dad-keep loving your daughter.
For more information about coma and other terms used to describe a
patient please visit the following site:
http://www.homestead.com/emguidemaps/files/coma.html#Definitions
-John Pistorius
First Mail Response
- My thoughts --Feelings run hot both ways on Terri.
To me biggest thing about this situation is a wake-up call for people to get
their affairs in order at a young age. If a person does not want to have
life support like a feeding tube after a stated amount of time etc., then
that individual needs to have a clearly articulated legal medical directive
that has signed witnesses pre-injury. Otherwise, it is just hearsay and
second guessing. Also they need to say it loud and clear to ALL family
members. Send them copies of your living medical directive will, Kinko's is
not that expensive! Heck you can get the basic forms free online.
State laws are needed for situations where a spouse and the
incapacitated person's family (grandparents, parents, siblings and
children) have opposite ideas on "pulling the plug". They should be able
to take over guardianship including financial decisions. Any insurance
monies on behalf of the patient should be administrated by a third party.
I believe when you receive a 1.5 million medical settlement to cover the
life of your beloved spouse:
[1] You invest it wisely for planned income withdrawals.
[2] You actively seek and implement therapies.
[3] You should not be the one determining when that life
ends.
-Anita D., Chico, Cal.
Second Mail Response
- Contact the
rube Governor of Florida and the state body and tell them to stay out of
people's private lives. They have no jurisdiction over this tough and
painful personal issue. Court appointed, independent doctors declared her
in a permanent vegetative state, with no chance for recovery. Period.
There is a black spinal fluid where her cerebral cortex once existed.
Jeb respected the
FL State Supreme Court decision to award the U.S. Presidency to his
brother. Are they wrong now? Funny how decisions are only OK when they
are rendered along the lines of one's personal beliefs.
If this unimaginable
intrusion does not appall you.....well, let's stop here.
-Mike G.,
Pittsburgh
Third
Mail Response
- my
thoughts on subject:
The National Head Injury and the Brain Injury Association have survivors
deemed comatose vegetables who have survived coma and with non-relinquishing
support of caring persons and miracles beyond belief have lived to prove
there is life after brain/head injury.
Was it twenty years for Rip Van Winkle? Was the story of "Sleeping Beauty"
all fiction?....or was somebody trying to tell us something that no one
would believe?????
Is the person who ordered the removal of the feeding tube and the person who
made this request willing to be guilty of "murder"????????
The feeding tube is "assistive technology"--the parents know this. What is
it that is not understood by persons who couldn't care or "feel" less, who
make judgments about that of which they know little?
J. Kline
Pgh., Pa.
"More
men fail through lack of purpose than lack of talent." -
William Ashley Sunday
"This is the true
joy in life--being used for a purpose recognized by yourself as a mighty
one; being thoroughly worn out before you are thrown on the scrap heap;
being a force of nature instead of a feverish selfish little clod of
ailments and grievances."
-George Bernard Shaw (1856-1950)
Questions to ponder: What is my purpose in life?
Am I a force of nature, or a selfish clod of ailments and grievances?
November Meeting
Notice
Next PABIA MEETING DATE: Tuesday,
November 4, 2003
TOPIC: Volunteering or Employment
WITH: Dr. Dennis Pad, Independent
Employment Consultant, Robin Page (United Way), Andy St. John (Life's
Work), Megan Frezy (Working Order), Lynn Ireland-Knight and Alyssa
Brenneman (AHEDD).
PLACE: 1323 Forbes Avenue, Pittsburgh Near
Mercy Hospital and AJ Palumbo Center
ADMISSION: Free
PARKING: Free Parking Lot adjacent to the
building
Contact: Ed
Crinnion at 412.761.9870
Refreshments provided.
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'till next time-Seek to be and remain Barrier-Free.
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