Amp U T chat is for amputees.
| VOLUME 2 # 6 | FEBRUARY 19, 1996 |
IN THIS ISSUE
1.) NOTES FROM John & Joyce
ONE BIG NEWSLETTER, hang on!
THE AMPUTEE AND DISABLED IN MYTH
AND PUBLIC IMAGE
Joyce K. Meyer
©Copyright February 1996
Those concerned with having a good public image employee public relations firms or specialists. As the 1996 campaign is beginning to invade our television sets, newspapers, radio, etc., we are being choked on regular examples of negative and positive public images. These attempts to sway public opinion and recollections about literature, television, movies and history have filled my thoughts for the better part of this week.
What is the public image of the amputee or disabled?
In literature, we find childhood tales that perpetuate the idea that prosthesis users are "evil" characters. J.M. Barrie's children's tale Peter Pan, first brought to the stage as a play in 1904 demonstrated how cruel Captain Hook hated children. There was (is) an inhuman quality to the prosthesis--it is hard, cold, insensitive metal or wood. Even earlier we encounter Captain Ahab in Melville's MOBY DICK. The loss of his leg lead to a life and death obsession with revenge against the white whale, and resulted in the loss of all hands of the PEQUID, including Ahab, except for the hero/central character.
If we reach further back into literature, and history, we can make a case of RICHARD III, the hunchbacked slayer of the young princes. In more recent history, Kaiser Wilhelm, the "Evil Emperor" of Germany in World War I had a "deficient" (left?) arm.
Even in modern "fables/myths" the "BADGUY" is the one with the "hook", fake hand, eye patch, "thumping leg." Look at PREDATOR II, some of the James Bond movies, TERMINATOR, etc.; the prosthesis is something that is NOT human.
In the STAR WARS movies it is a little different. Darth Vader is the villain, but his mechanical nature has something to do with that? When his life support suit integrity is violated, the *man,* as he is dying, is revealed and he is very human and at last displays affection for his son. ALSO Luke Skywalker, (the hero) in battle has his hand cut off during his escape. Yet in the next scene he is already fitted with a "bionic" prosthesis that is totally human looking and functioning.
With too few exceptions, and alarming regularity, there's a visibly disabled person or someone wearing a prosthesis that is the villain. It is, at the very least, "cultural."
It took many years to combat the myth and rewrite objective history to change our perception that: INDIANS=BAD, COWBOYS=GOOD. What can we do to improve the public image of the "handicapped"--specifically, amputees?
About a month ago, I attended training through the United State Postal Service. The specific class I'm thinking about was aimed at managers handling customer relations. We watched a video of a seminar presented by a very dynamic speaker (unfortunately his name was not stressed and I don't have time at this writing to confirm that.) He explained how a single bad experience will remain locked and fixed in a customer mind; that it would take a minimum of four (4) "outstanding positive performances" to bring the customer back to just an objective neutral position on service performance.
For every one negative representation of amputees, whether it is movie, literature, history or personal contact; it will take a minimum of four positive representations to correct or improve public opinion.
An online friend from another listserv expressed some annoyance recently, about a online discussion and curiosity concerning "celebrity" amputees. He felt that it was frivolous, perhaps, or perhaps that these representations lead to confused expectations of the public.
Something needs to be done in the arena of the public eye to improve/change the perception of the disabled and amputees. "Celebrities" are in the position to effect this. While philosophically, it shouldn't matter, realistically, it does. These "celebrities" are our "good will" ambassadors.
We need a "new myth." The "Bionic Man" and the "good TERMINATOR" while fiction, are a beginning to this. We could use some new "classic" children's tales; a PETER PAN rewritten where Peter is the prosthesis using child that triumphs over the evil Captain. Or *any* well written and presented story where the hero--the GOOD GUY--is an amputee.
Not only can celebrities and literature contribute to a better point of view; amputees that meet the public one-on-one can have a powerful influence on the general public image of "the community."
What is YOUR public image? What we do and say in our daily encounters is as important as any celebrity--more important. While I may watch a film or read a book and forget the character's name or the scene, I will always remember my personal experience; what THAT man did! or THAT woman said! Every mean, angry, bitter remark or comment is not only a hot branding iron in my memory, but brands the "mark of Cain" on every "like" person I meet. (It's called stero-typing and it is POWERFUL!) It will take all of us to make the "new myth" one that reflects positvely on the disabled and amputees.
(Also, see NOTES in Vol.2 # 9)
LAST WEEK
Last week John attended the National Farm and Machinery Show. His schedule for that day was hectic and he was unable to give a talk to a large group but he did meet with a few individuals, including passers-by. (It was an exhausting day and John is still "paying" for it, but enjoyed every minute of it.)
The people that John spoke with were from Purdue University AgrAbilty Project, Easter Seals, and University of Kentucky AgrAbility project. These people are involved with aiding amputee/disabled farmers and designing adaptive equipment.
Also, John was interviewed by Deborah B. Reed, Project Manager, Farm Family Health Study, University of Kentucky Agricultural Health and Injury Prevention (Southeast Center). John and Ms. Reed discussed amputations, primarily upper but also lower, and how it affects the ability to continue farming and the family.
Ms. Reed is working on a presentation for the nursing community and other interested agencies on the amputation experience, "start to finish." The interview was very in depth and her finished work should be a great addition to the amputee community. In the next several weeks, she will be going to Australia to give a presentation.
In the mean time she is still seeking people to interview and anyone interested in partcipating should contact Ms. Reed.
Contact DEBORAH B. REED, RN, C. MSN at: 1-800-288-9747
RECALL NOTICE
This came in the mail this week:
QUICKIE P-300 electric wheelchairs w/ airless solid casters w/wo the LABAC seating system OR pneumatic casters using LABAC seating system (perhaps on certain serial #) are being recalled, due to a problem the "fork stem assembly." The front forks may be subject to cracking. The company recommends discontinuing use of the chair if possible, until you can contact either QUICKIE or your supplier.
NEW AREA
For those of you online via AOL, there is a new online area, Keyword: ONLINEPSYCH. It is NOT just psycho-babble. The area connects to message boards about the disabled, sexuality, medications, etc. and includes weblinks. Next week, we may cut and paste something from there as a sample. Those on AOL can keyword to the area and peruse the content yourselves.
Noting the length of the newsletter already, we will save the rest for next week. Ya'll have a good one.
~~John & Joyce
2.) "LETTERS TO THE EDITOR"
February 12, 1996
We received the following additional information from Charles, regarding the TIPS section from the last issue:
For Lower Extremity
[Roll on silicon liners can be easily install be first reversing the liner and sprinkling with talcum powder, or use a misting bottle filled with a solution of water and a small amount of rubbing alcohol. (Check with you prosthetist first.)]
We discourage the use of powder because it can collect in the latch mechanism and cause problems. If the wearer is clever enough to disassemble and clean the latch occasionally, then there should be no problem; but we find these individuals to be rare. Powder, if you MUST use it, should be applied to the OUTSIDE of the sleeve to aid in reversing it. There should be no need for powder, or alcohol for that matter, on the INSIDE, since the sleeve is rolled on. Also, you normally want maximum tension between the sleeve and the skin, so powder on the skin is not recommended. We think that alcohol probably helps with hygiene, and we issue every new ICEROSS patient a spray bottle full of alcohol (70% isopropyl).
I've had a few ICEROSS patients who complained of uncomfortable pulling at the distal end of their limb, particularly when sitting, even though we use the ICEROSS sleeves with matrix. A short nylon sheath, worn over the distal end between the skin and the sleeve, seems to relieve this problem.
Chas.
((EDITORS NOTE: Thank you Charles, for providing a clearer explanation of the tip from the previous issue.))
February 13,
I liked your notes on movies. Had to smile. We lost our house, filed bankruptcy. Cleverly, [we] put the car in my dad's name...(It's old, but runs.) [We] live on the thin side of life. We do learn to prioritize...don't we!! To me, my AOL friends have made all the difference in sitting home all the time, unable to go and all that sad stuff. (Hankies out anyone? ha ) Ya gotta get on with life, and we do try. My lawyer is fighting for SSI for me now. So I do know where you are coming from.
take care
C.
THE ADVICE (DISCLAIMER)
Please be sure to read the information at this link at least once.
4.) HINTS AND TIPS
TIPS
Some weeks back there was a request (on one of the listservs) for tips on preparing the home for the return of a new amputee. The amputee was going to be in a wheelchari for at least awhile, if not permanently.
Short of taking out a loan/second mortgage, or selling your first born, there are a few inexpensive things you can do to make the home an eaiser environment for the wheelchair user/amp. But it means saying, "to hell with convention, this is the way I have to do it."
1) Get rid of (store) extraneous furniture You don't really need 6 chair around the table if there are only 4 family members. Moving those extra chairs into storage should allow a bit more space around the table and make it easier maneuvering through the kitchen. In the living room, you don't really need two end tables AND a coffee table...LESS furniture IS MORE room for getting around. This can be applied to any room in the house.
2) In the kitchen, get used to leaving some clean dishes in the drain board, in the dishwasher, or even right out on the counter or table. Why put them up on the shelf in a top cabinet where someone can't reach them. In the pantry (or your equivalent) don't store heavy items like cans, or breakable jars on shelves above the head.
3) In the bedroom, move the chair user's clothing into the mid-height dresser drawers. the bottom drawers are to hard to get at...in the case of a tall dresser the top one or two drawers are also too high. (See note below about bathroom mirrors, consider a full length for the bedroom.)
4) In the bathroom, get used to leaving the most frequently used items right out on the sink top or vanity. Again, why put them up in the medicine cabinet--another place hard to reach from a chair. Either mount a second mirror on the wall near the sink or get a hand held or stand mirror--a guy can't shave and a woman can't put up make-up on using that standard issue medicine cabinet mirror.
Install a lower towel bar, or just lay towels along side the sink or drape over the edge. Re-arrange the linen closet so the most commonly stored/needed things are at mid-height (toilet tissue, linens, soaps, etc.)
5) In bedrooms and coat closets ask someone to install (or do-it-yourself) a second clothes rod at about 4 ft.
These are not such radical ideas, but can make daily life so much easier and less frustrating. They don't dramatically alter the rest of the home environment for the use of others.
These things seem so obvious to me, I just accept them, but if you've always used the house the way Better Homes and Gardens illustrates, maybe you haven't thought about these unconventional arrangements. If you get down at chair height (or child height for example--because we did some of the modifications for our son when he was little, also) you can look around and probably find plenty of other ideas.
Adapt your environment to YOUR needs.
Have a hint, tip, or suggestion? Please email us and we will consider it for
use in the newsletter or chat room.
5.) QUOTE/THOUGHT FOR THE DAY
"If all the good people were clever,
And all the clever people were good,
The world would be nicer than ever,
We thought that it could possibly could."
--Elizabeth Wordsworth (Good and Clever)
© February 19, 1996 J. Meyer All rights reserved.
It is you responsibility to read the DISCLAIMER.
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