Amp U T chat is for amputees.
[amputee/_private/headerb.htm]| VOLUME 2 # 14 | APRIL 22, 1996 |
IN THIS ISSUE
1.) NOTES FROM John & Joyce
We're baaackkk! :) Hopefully, NOT like the proverbial bad bowl of chili [grin].
I believe most of you know about our adventures in floor covering; the kitchen job is about 95% complete. The delay? "Well, we have decided" that new carpeting is definitely in the *near* future, as is new paint and a new deck and that color darkroom we have delayed far too long. (We have the equipment, just not the built room.)
We are also shopping for a computer upgrade and hope to be able to offer something "new" to the group soon!
No, we didn't hit the lottery (I wish!) but we've have been biding our time. Now that it's spring (time of growth and renewal)--before we roast in the heat, after our bodies have thawed--this seems to be the time!
I have a bit of a tale to tell. I hope you will indulge me just a few moments--there are at least three amputee relevant issues related to the activities I am about to relay.
John is the Secretary of the Louisville SCALE FIGURE MODELERS SOCIETY, and the weekend of the 13th & 14th was the big annual show, WONDERFEST. This took months of preparation and intense work the last several weeks not culminating in the show, but only coming to a conclusion this weekend. (There were post-production meetings and guest hospitality that continued through last week.)
The show included a scale model contest, two movie showings, guest speakers, a dealers room, three charity raffles, and LOTS of fun.
(Those interested can read more about it at http://www.wonderfest.com)
I need to introduce you to the guests so that further comments will be in perspective:
Chris Walas (pronounced "Way-less") is a Hollywood special effects tech, movie modeler, and director. He is "the Gremlin Guy" [grin]. You may "recognize" his work in the following movies: GREMLINS, GREMLINS 2, THE FLY, THE FLY 2, STAR WARS, INDIANA JONES (Raiders of the Lost Ark and Temple of Doom), ARACHNIPHOBIA, ENEMY MINE--and the list goes on. Chris has recently closed CWI, his special effects business, to dedicate his time to his directing career. He donated many movie props to the charity raffle, which was to benefit the Pediatric Aids Foundation and Crusade for Children.
Bob and Kathy Burns have a private (by invitation only) museum dedicated to preserving movie memorabilia. They have thousands of movie props! Some of the items you would find there are the Time Machine, the King Kong and Mighty Joe Young armatures, the Terminator and Predator, LOL Bob even has the "ED WOOD" flying saucers. Bob was a special make-up artist at CBS before retiring. Kathy is an accomplished photography and together Kathy and Bob have hosted some of the most legendary Halloween "parties" in Hollywood.
Ray Harryhausen is the world famous, award winning, stop action animator of MIGHTY JOE YOUNG, SON OF KONG, the SINBAD movies, JASON AND THE ARGONAUTS, EARTH VS. THE FLYING SAUCERS, CLASH OF THE TITANS and more. Ray and his wife Diane have resided in England for many years. In 1992 Ray Harryhausen received the Academy of Motion Picture Arts and Sciences Life Time Achievement Award.
(You can catch interviews and documentaries with the above mentioned personalities on the DISCOVERY CHANNEL, the SCI-FI CHANNEL and the LEARNING CHANNEL.)
Also we were host to an anonymous television actor, who was accompanied by several "Hollywood" friends. He and his friends volunteered their help for the show, without being asked.
So, you can see that we had film savvy people all around.
John had met Ray before and was remembered and warmly greeted as "the guy with the hand." No "tsk-tsk-ing" here, it was not at all offensive.
At the Friday night set up, during a break, I over heard John having a conversation with one of the "Hollywood guys":
Guy: "Cool hand!" (he thought it was a movie prop)
John: "It's real." (with a smile) "I'm an *arms* dealer."
(Chris Walas bursts out laughing.)
Guy: "Oh..." a little red-faced and then smiling at the joke too.
Then the "usual" jokes started flying back and forth, such as: "If you need an extra hand, I've got one in my suitcase." Everyone was curious about and fascinated with myo-electrics, and the conversation continued periodically, all weekend.
((John: "This brings me to my first point. By openly discussing my electric hand I not only educated people, but I also put them at ease."))
The attendees were very well mannered in most all aspects. We had security officers, but didn't have to call on them more than once or twice. The place was not trashed, there were no serious incidents--all in all, it was an exemplary show.
There was only one negative.
John was rather worn out (understatement) by the activities of the show and by the close of "day one" I encouraged him to use his cart (which he had on hand but had not used) to go up to the room. (John also had his cart convenient for a show guest to use. The guest is diabetic and recently had foot surgery.) We were in a room on the second floor directly across from the elevator.
Concurrent with WONDERFEST there was a YOUTH SOCCER match in town, many of their attendees staying at the same hotel. When John, Jesse, and I arrived at the elevator there were already several people waiting. We waited for the next elevators, in turn, but didn't "crowd" the doorway. In the minutes that followed another group approached. As soon as the elevator doors opened all these people pushed in front of us into the two elevators; some I would even say ran and dove into the compartment before we could even take a step forward. After that, I told John to park his cart right in front of the doors. My eyes grew slanty as I became very "irritated." [grrrrrr]
More people gathered, but there were fewer waiting for this third ascent. We moved back to let people off and when we did, there was more "diving" into the car. BUT, we made it. :) Unfortunately, to secure a place, John had to pull straight in, instead of backing. Two more squeezed in the elevator car; the car wasn't really that crowded but they stood right near the door. The doors opened to the second floor and no one would stand aside--until I *reminded* John VERY loudly to watch out and not run over the one man's feet--they were sticking out in the path of his wheels. "The man" got the hint, and shuffled back a bit. It took a more direct approach to get the other "teen"(?) to stand aside: "If you want this elevator to move you're going to have to move aside to let us off. (Evil Grin--I held my finger on the DOOR OPEN button.) It still didn't sink in; "why don't you come and stand BEHIND me, and he'll be able to get out."
John wants to install a boat horn on the mobility cart, I just want a cattle prod. :-/
John adds the following:
I attended my first WONDERFEST in 1994, then in 1995, I joined the club. The show is quite an involved production. The V.P. "Lee," produces the show with very little help. This year he had more help than previous years. (--I suppose the "double amputee with MS" shamed a few people into "consciousness.") This was the largest show the club has produced in seven years, with an attendance of over 1500 people, plus 105 dealer tables with 2 admission per dealer.
Our club has over 30 members, yet only a handful of us participated in the production. We (Joyce, son Jesse, and I) started at about 7:00 Friday night and worked until 2:00 a.m. Saturday morning (Joyce had to go home to take care of the animals and work her "regular job" early Saturday.)
We woke at 4:30 Saturday morning and worked until about 2: a.m. Sunday morning. Sunday we woke up at approximately 7:30 and worked until about 2: a.m. Monday morning.
We are all volunteers; no one receives any pay.
The job would have been so much easier, had more of the club members pitched in with even just a few hours work. Even our guests worked, without being asked. The Louisville Convention Bureau supplied four helpers. Those of us that worked also had friends and relatives pitch in. In spite of the lack of club member help the show went well, receiving many, many kudos, and we had a great time. This is a credit to Lee's organization of his limited manpower.
Observing and participating in this event leads me to these conclusions:
If you want to achieve worthwhile goals you need group participation. Amputees, unlike other special interests groups are, with few exceptions, totally unorganized. While the hearing impaired community, etc., have demonstrations and a united voice regarding issues effecting themselves and others, the amputee community seems apathetic--and those not apathetic, can accomplish little on an individual basis. Those that observe this, are aware of this, suffer defeating recognition, discouragement--self-infecting and re-infecting the health of the team. Beyond that, there are "sub-groups" that are unable to reach a consensus, thus wasting effort and energy dividing instead of uniting. They possess a personal cause/goal/agenda and cannot tolerate or compromise on the simplest idea.
This is why I support groups, such as the ACA. While not perfect, they are a step in the right direction with defined goals, providing information, assisting support groups, etc. Of course, we are not going to agree on everything all the time, but at least there is forward movement. Listservs, also are beneficial.
I wonder, how many of you have considered, for example, to write a letter to your local legislator to express your concern over prosthethic benefits? "Some one else will do it, why should I bother, I don't know how to write a proper letter, etc." *WE ARE* the "someone else" to someone else. No one can, nor should do everything, but everyone can do something. "We" don't appreciate being viewed as unable to help ourselves, yet we expect other people to help us without our input.
Unloading a van full of show props and display cases and setting up a dealers room is a formidable, overwhelming task for one or two people. But when everyone steps up to carry a box or two, the job is done, if not perfectly, at least efficiently. It reminds me of an old-fashioned bucket brigade. While one person can't carry 500 gallons of water to the fire, or a handful of people arguing about strategy can't move the first bucket, a team effort, saves the barn.
Is the idea of a "round table" too archaic, too naive, too idealistic; by-gone with Camelot, bucket brigades, and "all for one; one for all?" Ray Harryhausen laments the end of heroes, but Joseph Campbell sees the new heroes, the new epic journeys and quests.
"Robert" emailed us the following information about his group:
The Vancouver Island Amputee Society
We are based in the province of British Columbia, Canada. We have been in operation for 6 years, and have functioned in a support group role for 4 years before that.
We started out as a network with an amputee support function. We work with the local prosthetists and rehabilitation hospital to provide information to new amputees. We network with other groups that provide services to amputees. We provide advocacy on behalf of amputees.
If anyone would like more information about this group, email me and I will forward it to Robert. :))
It is tornado season in the "Heartland." Some of you that regularly follow the news may have seen that in our area (Kentucky/Indiana) there have been weather disasters. We have thus far been spared, in our immediate area. Other areas have not faired well. Our condolences to our "neighbors" to the south (Bullitt County) and the west (Indiana) and the east (Berea) and to those in Arkansas. We wish you friendship, aid, and a speedy recovery.
We will not schedule a chat for this evening. This weather situation is going to be around for awhile and we are told to expect severe weather tonight--right around chat time :(. Also, our phone lines have been damaged and repair is expected in the next 36 hours. I *hope* I can get connection long enough to send out this newsletter.
2.) "LETTERS TO THE EDITOR"
The following was posted to a listserv and I checked with the author that I might share it with you:
Tip:-- If you use neoprene sleeves, try using Orvus paste to launder them. This is a product that quilters, knitters, weavers etc. use all the time for fine washables like wool. It is very non-soapy and probably non-allergenic (I think). You would use it when you normally use Woolite. I have found it great to launder the neoprene sleeves for my husband. I soak the sleeve that is mentioned in tip #1 overnight (to help remove wrinkles in neoprene) in Orvus paste (about 1/2 tsp. in warm water in the sink), then rinse it out the next morning, roll in a towel to remove excess water, then lay flat to dry. I've had very good results using this technique and hope that you will too.
Best wishes, G.
((Editors Note: :D great tip! BTW "ORVUS" is a equine (horse) shampoo. If folks have difficulty finding it, besides checking quilt/fabric stores and catalogs they can probably find it at a farm supply store such as Agway or Southern States, or a tack shop.))
The following is a response from "R." regarding previous issues of the newsletter :)--just thought I'd share it with you.
Dear Joyce and John,
Thanks for the newsletter.
It is funny (strange) how easy I forget the lessons I have learned over the years. I have hosted "awareness" days at my office...having my coworkers function in wheelchairs and devices that simulated various visual impairments.
The world exists ignorant of the effect of disabilities. Awareness doesn't always produce the desired change, but it does often. And the wild thing about it is that the lesson stays with people, when it is done well.
I have denied my courage in the past, simply dismissing it as whatever it took to survive. Thanks for the reminder.
R.
(R. is referring to "Awareness Training" and "Courage" articles from Vol. 2 #1 and Vol. 2 #8, respectively.)
Jack Richmond shared this with us:
$ HELP IS NOW AVAILABLE TO PROSTHETISTS WHO PROVIDE LIMBS FOR AMPUTEES WHO CANNOT AFFORD THEM.
The Barr Foundation and United Amputee Services Association are pleased to announce the formation of the Barr/United Amputee Assistance Fund.
The fund provides the prosthetist with reimbursement for component and material
costs (subject to cap amounts) incurred in the production of limbs for amputees who cannot afford them. In addition, the fund pays a fee for fitting and maintenance for the 1st year.
THIS IS A COOPERATIVE EFFORT BETWEEN "THE FUND" AND THE PROVIDER.
All applications must be submitted by the prosthetist who will be fitting the patient.
To request an application or for more info:
Email me at: JDRichmond@aol.com
or call United Amputee Services Association at 407-678-2920
or write to us at:
UASA
P.O. Box 4277
Winter Park, FL 32793
Sincerely,
Jack Richmond, Amputee
President UASA
Please understand applications for money must be submitted by the patients' prosthetist. Also the money is only available for amputees with no other source of funding (it may not be used to supplement other forms of reimbursement.)
THE ADVICE (DISCLAIMER)
Please be sure to read the information at this link at least once.
4.) HINTS AND TIPS
TIPS
Upper extremity
Combination wrenches can be cut in half (weld/grind/hacksaw) and have a 1/2" by 20 (bolt) welded to each piece. This gives you a box end and open end wrench for the price of one.
Lower extremity
Now that warm weather is upon us, don't forget to carry extra socks. When perspiration accumulates and makes the socks wet it can irritate the skin, so those extra socks will come in handy.
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
"Subjectivity and objectivity commit a series of
assaults on each other during a human life out of which the first one suffers the worse
beating."
--Andre Breton
(Preface to NADJA)
© Copyright April 22, 1996 J. Meyer. All rights reserved.