Wednesday, August 29, 2007
Monday, August 27, 2007
This is the best article I've seen yet on invisible disabilities. It's titled "'But You Look So Good!' and 7 Other Things NOT to Say to a Person With a Non-Visible Disability" and it's from "DiversityInc Magazine: Diversity and the Bottom Line". Imagine that. Something good from the bowels of corporate America. Forgive my attitude. It'll probably get better a few more years down the road from my experience with that government job where they threw me away because I had one disability too many. Government, corporate, they're all the same, right? OK, back to the good--
The kicker is the last section. It took me a minute to get it, what the 5 second difference meant, and it's so true. Here's the last section:
This Means You
If you think this won't be a concern until old age, take note: 75 percent of people with chronic conditions are younger than 65.
One of the biggest obstacles in the disability community is the attitude of the temporarily able-bodied. When Lawrence Carter-Long, director of advocacy for the Disabilities Network of New York City, gives lectures to college students, he asks, "What is the difference between a person with disability and a person without?" After getting the usual answers—having a wheelchair, using a cane or a hearing aid—Carter-Long reveals the real answer: "About five seconds."
"Most of the problems regarding access have more to do with proximity than with malice. If it's not you, it could be your brother coming back from Iraq, it could be your aging parents, it could be your niece being born with a disability," he says.
Carter-Long and other disability-rights advocates urge action by those who think "it's not going to happen to me" so that when disability does affect you, access to basic needs—such as housing, employment, healthcare, assistance—won't be a problem.
Byzek says, "The greatest gift the independent-living and disability-rights movements can give our society is the freedom to just be people. We've created a society that wants people to adjust to systems. This is backwards. SYSTEMS should adjust to PEOPLE. We come along with our limps, our canes, our wheelchairs, our dodgy eyesight, our brilliant minds wrapped in fatigued bodies and say, 'Hey, can you just wiggle this rule?' and are becoming adept at pointing out how this is actually civil rights."
She continues, "We have the right, as citizens, to participate fully in our own society. What would happen if everybody had the ability to wiggle their environment, our systems, to make their lives easier? We'd be a happier, more relaxed society. We'd have fewer stress diseases, we'd live longer, we'd be more productive."
If you're on the DiversityInc website long enough they will demand your email address before allowing you to continue looking for free... hope they don't do anything evil with my address. The article was so good I decided to take a chance on them...
Thursday, August 23, 2007
My time slot is:
Wednesday 9/12 at
3 p.m. - 4 p.m. Pacific
5 p.m. - 6 p.m. Central
6 p.m. - 7 p.m. Eastern
My topic is "Blogging About Your Illness".
Wednesday, August 22, 2007
So, the preceding paragraph was for the purpose of relating the following paragraph to the point of this blog--invisible chronic illness. I'm researching for my stint as host of the Invisible Chronic Illness Week (ICIW) Conference on "Blogging About Your Illness", and so far have learned, among other things that I will be sharing with you here later, that I should stick writing about things that have to do with the point of the blog so people will keep coming back to read. Go figure. (Facetious, in case you didn't catch it.)
Louise Shaffer is married to my mom's cousin. I think her books are really good. The first two are set in a place called Garrison Gardens. She used to live in Pine Mountain, GA. (All you Georgia folks--can you CALLAWAY Gardens?)
Read the first four chapters of her latest book here.
Fellow fans of Louise's have inspired me to start a reading page. Or maybe it will be a blog. I haven't decided yet. I just wanted to go ahead and give credit where credit is due.
Friday, August 17, 2007
Monday, August 13, 2007
Monday, August 6, 2007
Sunday, August 5, 2007
From Dominie Bush's 8/4/07 newsletter--Item #5:
FMS/CFIDS SUFFERER IS CARETAKER, Daughter & Mother
"Just quickly perusing your latest compilation (fantastic FM/CFS
newsletter!!!!!) and as I read am struck by two things.
1) how many people with FM and CFS are prescribed a plethora of drugs
to control or supposedly "cure" symptoms and
2) being desperately ill and socially ostracized we who have FM and
CFS are almost every time I read about treatment, told that another
medication can make the difference or is the missing magic bullet to
Dominie, I have had this illness definitively diagnosed in 1996 but
had it for at least ten years before that so for over 20 years I have
had it and have tried everything that I have come across to try to get
better - all kinds of drugs, eating programs, sleeping aids,
exercises, rest, relocations, etc. and after all of it this is what I
have concluded. What really helps is being able to rest and sleep and
to NOT have to be CONSTANTLY badgered by financial worries, social
stressors (having always to explain why you can't work as much or at
all to family, friends, co-workers, doctors!) environmental
If we were allowed to recuperate with what we really need, clean
water, clean air, fresh food, quiet, love and understanding, no
familial demands and NO major stressors then yes, we WOULD get better.
These things are required for our adrenals, our organs, our nervous
system to recover more quickly. However, I find, in this society, once
you get sick, you're done for. Only the most kind of friends and
doctors who understand the reality of this illness stick around and
don't make you feel like you did this to yourself or that somehow you
are to blame. Yes there is a degree of blame for sure that we can heap
on ourselves like working 80 hours a week day in day out (overwork),
then coming home and taking care of a home and responsibilities and
putting ourselves last, then add kids and family members (trying to be
a good parent/sibling) and not to mention things out of our control
like pesticides in our food that we didn't have 60 - 70 years ago,
etc. etc. etc. However, society at large is not helpful in my opinion.
It is the minority of society that has been somewhat helpful and
usually is comprised of family or friends of those afflicted with this
illness and those who bear it themselves who have risen up, heroically
and against ridicule, to bring awareness and credibility to the
reality of the suffering that is FM/CFS.
Right now because our society doesn't respect or care for those who
have paved the way before them, I have moved in to care for my aging
mother who has alzheimer's and another chronic painful illness. I had
to quit university (I was hoping to re-train myself for another career
that I could hopefully support myself with as disability income is not
nearly enough to live on), move from another province and leave all
that I had established to do what was needed. I have other siblings
but they are too selfish to take ANY time out to help and this is the
problem. Those who develop this illness are usually the ones who don't
say no to responsibilities. They ARE the responsible ones and as the
result of almost always having to pick up the ball when others won't
or don't do their fare share they develop this and other illnesses.
I completely resent that for a society for whom I have given so much
(and continue to at my financial and physical detriment) that in
return, they once again, try to exploit me to make a buck. We, the ill
need to be given financial sustenance in order to recover, not
continually having to pay it out. I think, as a society we truly are
only as strong as our weakest citizens and, I have to say, that I have
almost lost faith in the whole system. It is only because, again,
because of the extraordinary people I have met through this illness,
who not only try to but DO help that I don't completely walk away from
society as a whole, and, it is precisely because of all of you, out
there, who suffer in silence, who are attacked for being ill and
swindled out of thousands and thousands of dollars in hope of a cure,
that I continue to explore ways to returning to health in order to
share any victories I may achieve with you.
I truly believe our society no longer follows true Christian principles. Might
makes right, the dollar is virtue and he or she who makes the most of
it is the most virtuous and most worthy of everything. The man or
woman who sacrifices money for caring for his or her fellow man or
woman is considered weak and naive and a bad business person.
Maybe one day society as a whole may remember that
as we done unto others we do unto ourselves. I doubt it, but it's a hope."
OUR DEAD AND DYING TREES
"What is the common dominator for deteriorating tree health in so many areas of the United States? Air pollution, white haze, climate change, increasing UV radiation, higher humidity caused persistent jet contrails, jet fuel emissions, lack of sunlight from persistent aging contrails or climate change produced by persistent jet contrails? There are over 50+ weather modification programs ongoing, according to NOAA records, in the United States. What impact does this chemical manipulation of our weather have on the regional micro-climates that are needed for tree, plant, and agricultural crop health?
Artificial weather modification through the use of chemicals can impact all of us by reducing water supplies, changing agricultural crop production cycles, reducing crop production, and water availability. Since most experimental weather modification programs use chemicals released into the atmosphere the public could be subjected increasingly toxic or unknown substances that could adversely impact agricultural crops and trees.
Global dimming and the persistent contrails, that produce man-made clouds, may have serious impacts on crop production. A recent corn crop study in Illinois shows that cloud cover reduces corn crop production while direct sunlight increases production."