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Many thanks re the billboards, but something was overlooked
by
Judith Fleet Wisdom, M.A.
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To: Tony Hale TonyH@cpalace.com.au
Subject: Many thanks re the billboards, but something was overlooked
Dear Mr. Hale:
I want to thank you very much for your having responded with such
promptness to my email, which had objected very strongly to those
billboards that used, however innocently, the name of the very serious
disease "Chronic Fatigue Syndrome" (CFS) in a way that made a mockery out
of this often dreadful illness, currently incurable and which has virtually
undone my life and that of so many others. I want to thank you also for
having written to us to let us know the action you were taking, and for
apologizing. I very much respected you for that.
I'm sure you can imagine that the name -"CFS" that was chosen for this
illness (a long story) has not helped us. For, it makes it rather easy for
people to take it lightly and even mock it. There are other serious
consequences that occur as a result of the name as well: clinicians and
researchers who so desperately seek grants to study the complex ins and
outs of this disease, with the ultimate purpose of both alleviating its
several most disabling and severe symptoms (epic fatigue being only one,
however important a one), and ultimately curing it, have a harder time
getting the money, though, happily, increasingly these researchers are now
having a less difficult time. This, because CFS is increasingly (though
still not sufficiently) getting the serious recognition it requires if
we're not to remain incurable invalids all our lives-the "we" being those
of us who have it, many of whom, myself included, were perfectly healthy,
vigorous, productive people. This increasing respect is occurring both in
medical and scientific circles as well as among the public. But it still
has a very long way to go.
The name "Chronic Fatigue Syndrome" also often places terrible burdens on patients
afflicted with it: sometimes with members of the health
care system, from some doctors, nurses, technicians, and secretaries, all
of whom affect the care and atmosphere of care. For, some of these people
are still are ignorant of the disease. And the name, if someone doesn't
know someone who has the illness or doesn't know about it, makes us the
target, as with your billboards, of dismissal and mockery. So on top of the
physical suffering (over years and often increasingly worse), the often
loss of careers, financial solvency, and ability to have a decent social,
physical activity (the latter of which brings on other health problems),
and the all-important cultural or leisure part of our lives, we have to
suffer mockery when it is basic help and care we need and are after. For,
when the attitude of mockery, disbelief, and dismissal occurs in those
working in health and welfare bureaucracies, it makes trying to get by
while you're trying to get better (or not worse) very
stressful-to-impossible. I could tell you so many stories about that. . . .
All of which is, of course, at the root of why we were so very concerned
with that billboard's message, which so blatantly mocked the disease. With
CFS as the name, it is SO easy for someone to say something like "What are
you making an illness out of it for, I'm chronically fatigued myself, given
my job, my family responsibilities, etc.?"
But, as patients clinically recorded experience and as increasingly solid
research into the illness have demonstrated over and over again--however
bad awful fatigue is when you are well (I suffered it myself many times in
the many, many years I was perfectly healthy, like on moving day or when
there is a death in the family) it is simply very different from the
fatigue of this illness, alas. Or a good rest or vacation would indeed fix
it. And, as alluded to earlier, fatigue isn't the only severely disabling
symptom that comes along with the illness.
HOWEVER, in my original email to you I brought up something that you DIDN'T
address in your answer to me or to others: that something really should be
done to UNDO the harm ALREADY done by those billboards that were in place
for however long they were, thereby sending such an UNDERMINING message
about this disease to (1) the folks who put them up; (2) the advertising
firm that probably devised them, with great delight over their cleverness
(I worked in advertising for a while before I finished my doctoral work in
the sociology of medicine, and I know what makes ad people proud); (3) the
people in the cars who drove by and saw the billboards; and (4) also the
people who all the former groups of people spoke to about those billboards,
maybe with a good laugh, possibly commenting how bogus CFS is and how
clever it was of your resort(s) to take such advantage of this fact and put
it to your good use.
All of that, of course, has, as I said above, ALREADY given support and
credence to those who take the position that Chronic Fatigue Syndrome is
much ado about nothing, or a sign of laziness, or self-indulgence, or a
psychiatric disorder (all of which, in the history of medicine, even when
the disease names sound very medico-scientific, occur when the medical
community cannot either see something clearcut under a microscope in the
way of an organism or pathology visible with current techniques of
visualizing. A recent example, even where there was admitted physical
pathology, is with stomach ulcers. For years they were treated as evidence
of not handling stress well. But thanks to a researcher, whose name
currently eludes me, they've discovered that a very specific bacterium, H.
pylori, is at the root of that painful and sometimes life-threatening disease.
There are countless other examples, as I suspect you might know.
Given the harm ALREADY AND IRREVERSABLY done to us by those very explicit
billboards, however unintended I trust that it was, what you've already
done as remedy (e.g., taken them down and apologizing to us) doesn't undo
that all. Billboards come down all the time with no meaning assigned to
them unless they are taken down as a result of public clamor, and ours was
private, and online. And your letters to us weren't public letters.
But there are things that can be done which would go a long way to help and
which I believe would ALSO help the image of your company(is), i.e., would
RAISE YOUR CORPORATE IMAGE by causing people to view the owners and staff
of your resort(s) as exceptionally caring, extraordinarily moral, and
decent individuals: that Campaign Palace and Hamilton Island (I'm not sure
how they differ, though I've assumed that the former is the resort and the
latter the geographical place or a related resort) is/are peopled by a
staff that would go out of their way to treat their guests with sensitive
and very caring service. And people, whether they are purchasing an item
in a shop, buying a computer, or selecting a vacation resort, pay A GREAT
DEAL OF ATTENTION to that aspect of whom they chose to patronize
Kindness and decency actually draws business. It does mine, and does most
people. IT SELLS.
MY REQUEST IS THIS:
That you, in concert with your advertising firm, with the help of some
well-respected and dedicated medical people, ones who are well-steeped in
clinical and research familiarity with this disease, but who can talk to
regular folks, not just medical people (I'd be glad to lend some help in
pointing the way to such people, both in the U.S. and Australia. And I
know some patients in Australia, via the Internet, who have shown
themselves to be so intelligent, reasonable, reliable, and knowledgeable,
and I would think they should and would help as well.
This sort of medical consultation/advice, along with that of a few patients
who have been dedicated and fair-minded, would be to help you help you and
your advertising firm, take the sort of counter action necessary to undo
the harm those billboards have done.
Your advertising people might very well know best. But I was thinking of
something either like another billboard, or mass mailing, or, BETTER YET, a
short radio and/or television piece that would (a) apologize for how casual
you were about so serious a medical illness; (b) that you hadn't known that
Chronic Fatigue Syndrome was a serious and currently incurable condition or
would never have taken any steps to heap upon those already suffering
ridicule, or demean them and their illness, as those billboards very much
did; and (c) take this opportunity to put out some very basic information
(factoids, nothing elaborate) that would help educate people about CFS.
The sort of factoids that I can think of right now might be of the
following sort: (a) its Australian and worldwide prevalence; (b) some of
its main and most disabling symptoms; (c) who to call locally for more
information; and (d) where contributions for further research can be made.
The choice of these would be up to the form your piece would take.
I am also sending this email to Barry Atkins, who I also believe was
involved with the billboard, though I didn't, I think, originally write him
too. I know I didn't hear back from him, as I did you.
I very much look forward to your reply. And do hope you realize that
although in taking the billboards down you addressed the future, avoiding
creating further harm, which was good and very appreciated, that didn't do
anything to address the harm already done or compensate those you harmed
already, despite your very likely doing it quite innocently, which I do
believe and prefer to, and which isn't really important to me.
Sincerely,
Judith Fleet Wisdom
Cc: Barry Atkins
September 19, 1999
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