Fall is around the corner...where did the year go? This past year has seen the Alliance form its Executive Board of Directors, begin forming its Advisory Panel, begin work on incorporation & its non-profit status. We've come a long way baby! We plan on going even further and with our membership's help, we can do it. This next year will see the membership taking an active roll in voting on Alliance policy and advocacy issues. We are not a social club. We are an organization designed OF, BY and FOR the disabled. Visit your WEB page...yes, your WEB page. This is your organization too: http://www.naotd.org/ Tell us what you like about it, don't like about it and what you would like to see added.
Over the last few weeks, you have received notification of some new areas that have been added to the news letter and that the "letter" will now be published on a monthly basis. We would like to hear from more of our members, so please don't be shy. Send us your submissions. If yours is selected, you will be notified prior to publication. For those of you who would like to submit, but who may be concerned about having your screen name included, just tell us you would like it to remain confidential and it will.
************************************************* THE MS RUNWAY by FTemple917: Just some thoughts about the MonSter, aka MS, a ka Multiple Sclerosis.
Coming up with a name for this column presented a problem. "The MS Corner", "The MS Nook". I don't know about you, but as an MSer ... as a person, I don't like being stuck in any corner or nook. MS has been one of the 'orphan' diseases too long. And I won't be placed in a quiet little orphanage in some quiet little corner.
I will rage against being sent to some nameless niche by some nameless Fagan pleading, "Please sir, may I have more." More research, more treatments, more awareness of the disease. "Please sir!" There are now about a third of a million of us in the United States alone, with about two hundred added to the ranks every week. Perhaps it is time to come out of the corner, fighting.
I do, of course, understand the economics of 'orphan diseases'. They cost too much to develop drugs for. With the exception of Berlex and its Betaseron and Avonex, there are no drugs approved for the treatment of MS. NONE. Think about that for a moment. (And Avonex is a derivative of Betaseron.) Every publication I have seen relating to MS promises that 'a cure is coming soon.' Great! But unless some impetus is given to the drug companies, I don't expect to see a cure in my life time, nor in my children's life time either. Unless some impetus is given ...
Organization is the key. The voices of a third of a million individuals is nothing but a whisper. An organization a third of a million strong has a voice that is nothing short of a roar. Think about it and write me with YOUR ideas. e-mail me care of NAOTD@aol.com.
************************************************* HELP: If you're hot and just can't seem to Keep Kool, then the Keep Kool Band is the answer. Just soak the band in cool water and in 30 minutes you are ready to Keep Kool for up to 12 hours.
For this and other exciting products, Visit this WEB SITE at
WWW.POWERNET.NET/~INFINITE
This site is best seen with Netscape.Things To Ponder: Submitted by KSFLYS2 - Why are there flotation devices under plane seats instead of parachutes?
************************************************* SPEAK UP...SPEAK OUT: Submission by Dale12344 Thoughts on Disabilties ...
The disabled deserve true EQUILITY as everyone does ... it's only fair!! ... and no one (in my opinion) deserves pity ... in this world there is not a time nor a place for this. I believe only through equality & respect of ALL PEOPLES will come a sense of dignity, the feeling of self-worth, enpowerment and therefore true freedom! (which we all should be seeking) The thought that living "without "a disability is looked upon by many as "superior" is appalling to me!! It takes a lot of capability to live your life with a disability that many others don't (lucky for them) even have to think about. Each one makes their own way in this world (as it is) and usually the one with the disability must overcome the biggest hurdles to get to the same place as an able bodied person. After so much hard work on the part of a disabled one ... who WOULD trade lives with another!?!?
( not me )More Pondering:
Why do fat chance and slim chance mean the same thing?
************************************************* BEEN THERE...DONE THAT - By: SPIKE/Travel Director for: "National Alliance Of The Disabled" For un-edited version, please request "Florida 96 Archives" from Blue55Wing.
YO, YO, YO, Y-ALL!!!!!!!!!
Well, I'm back from a fantastic ten day trip to Florida. Departed Nashville Int. Airport on 7/1/96 - Southwest Airlines. The same airlines that we went to Las Vegas on. Didn't have a bit of trouble with Southwest. They loaded me and unloaded me with no problems, and the round trip fare was only $142.00 each. On arrival in Tampa, we were met by Phillip/"Wheelchair Getaways"/P.O. Box # 986, Indian Rocks Beach, FL. 34635/1-800-348-9424. The lift van they provided, after a 50% deposit-full size Ford van with a "RICON" lift - was beautiful and had all the correct tie downs, back-up systems for the lift, rear air (a must in the FL heat), tiled floor-which is great for spills, & was loaded with all the buzzers & bells you could imagine. Phil loaded our luggage, drove us to their rental lot and thoroughly went over all the tie downs and controls for my wife who was going to be the driver. He then drove us to The Court Yard Marriott in Clear Water, FL. and gave us his home phone number in case of an emergency.
Hoyer Life & comode were rented from uncoast Medical in the Tampa area. (813)-821-7015. Rental cost for the lift & camode was $56.00 for 10 days. They delivered, set up, and picked up.
The Court Yard Marriott-a nice hotel. We were booked in one of the handicapped accessible rooms; a king size bed -plenty of clearance for a Hoyer lift, ( both the lift and camode fit easily into the van we had rented. The bathroom left much to be desired as far as daily hygene.
The AMC Theater - Clearwater was very accessible, with lots of places to park a wheelchair and a very helpful staff; there was an usher/attendant in every theater and rest room to assist you.
We left Clearwater on 7/5 for a scheduled "Informal Mtg/ Visit" on Saturday, 7/6 with Weefiend AKA Torrie/Pres. of National Alliance Of The Disabled. This Mtg. was scheduled and posted at least two months prior, if you couldn't make it, don't worry...."We'll be back".
The Holiday Inn/Main/Universal Studios. The "Inn" was nice, but shows its wear and tear. We stayed in one of the handicapped accessible rooms; furnished with a queen size bed; plenty of clearance for the Hoyer. The room was rather small with a conversion job done on it. A handicapped accessible bath? Not really. More problems with daily hygene. The hotel rest rooms were not accessible either, although it was posted as such.
"Colossal Studios" This new attraction was a joint venture with some of the old and much smaller studios like "Reliant, Movietone, Republic etc......." We enjoyed a full course meal followed by a "Pirate Disco Party" with the cast after the show. Lots of action, high wire acts, tumbling stunts, indoor water ski-doo races, special effects etc. The drinks were not watered down so you knew you were going to have fun one way or another...LOL. Surprisingly for a small "Back Lot" Movie adventure/dinner show. There was plenty of room to "roll" around in. I even got out on to the dance floor and "cut some rug" with the other kids! LOL.....All the rest rooms were "larger" than some rest rooms that you would find at major restaurant chains. I have a very large power chair and had know trouble turning around inside the rest room. Most of the time I would have to "back-up" all the way out of a rest room that was "labeled" "handicapped accessible".
SNAFU - Traffic Jams, Getting Lost & Having To Use A "Roadside" Call Box In Pouring Rain. After leaving Colossal there were traffic jams, every part of Florida being high traffic areas. We got lost, were low on gas & pulled over to use a "roadside call box" for help. CAUTION....Emergency lane is not wide enough to unload a chair without having to go into grass area before being able to get back on pavement - BEWARE of getting stuck & fire ant hills. A trooper finally pulled up and confirmed that the wrecker with the gas was on its way.
Next morning we were up bright and early! We were going to meet "Weefiend"/ Torrie for an informal meeting/visit. We had a very productive meeting; talked about where "The Alliance" is now and how to go about focusing on our future as a Handicapped Advocacy/Support Group. We all topped off the day by going out to dinner. The van I rented was so large, it easily held both our chairs and could probably hold three more people on the rear bench seats. We ate at "Cracker Barrel" which is very accessible; the aisles big enough to accommodate a chair.
Ramore was unfortunately unable to join us, a hurricane on the Gulf Coast. She hopes to be back on line soon and sends her best to all. She did give us an open invitation to visit her at her family's restaurant anytime in the future for a home made Italian dinner!
The next day we hit "Universal Studios. I had been there about five years ago when they first opened, and at that time they were inundated with "SNAFUS". Well, times have changed and for the handicapped, "Universal Studios, Orlando, Florida" is a wonder land!!!!!!!!!! I was able to get on every ride with my power chair. After we left, one of the "Load Masters" by the name of "Jorge" came outside and truly wanted to know how we liked the ride, and for the handicapped, "was there anything they could improve on". In my opinion, "Universal Studios, Orlando, Florida" and all of there staff need to be given a round of applause for listening, seeing, and improving on the needs of the physically challenged. They do rent scooters and wheelchairs at the park, and people who are using this equipment will go on the rides "without having to wait in line".
We topped off our evening by having dinner at: "The Hard Rock Cafe, Orlando". The place was packed, but waiting time was no more than 30 minutes. There are three stories to The Hard Rock; accessible by elevator. I did not get a chance to check out the rest room as we were pressed for time.
Historic Orlando -"Church Street Station"-This section of downtown Orlando was charming in every way. The Chamber of Commerce has restored it with every detail you could imagine and everything is highly accessible, the merchants courteous as well as the local patrons & there were plenty of police that were on patrol on bikes to help out with almost any emergency or directions.
Soooooo, if your tired of seeing "Goofey" and your well past being "Mickeyed Out" drop on down to "Church Street Station" and catch what else Orlando has to offer.
And so ends our trip to Florida. There is so much more information concerning accessibility, sights to see, and more on travel information in the "Florida 96" Archives. Please e-mail me & I will be happy to send it to you. Now, get out there! Take that vacation! Educate the general public, remembering that you are representing the disAbled community. HAVE A GOOD TIME and when someone says "Have you ever been to?" You can sit back, cool beverage in hand, all the good memories in your head, smile and say, "Been there, Done that!"
Next month: DisAbled Travel To Toronto, Canada.
************************************************* A NOTE FROM A MEMBER:
Subj: I still exist! (Edited)
From: MinWynne1Please tell everyone "hi" for me, and I miss the nights in the E.A.C. I had to go out and find a second job and am too sore or too tired to visit with anyone online. My older two kids got braces, and Rachel has had her share of summer mishaps, so financially We didn't have a choice...BUT I MISS YOU GUYS!!!!!!!!!!
{{{{{{{{{{{{{{{{{{{{{{{Big Squeezie Hugs to All}}}}}}}}}}}}}}}}}}}}}}}}} Mindi (MinWynne1)Even More Pondering:
Do you need a silencer if you are going to shoot a mime?THE ADVOCATE - AN EDITORIAL: What is an advocate? A person who speaks up and speaks out; who supports or speaks in favor.
What is apathy? Lack of interest; indifference.
Are the majority of disabled apathetic? Do the majority of disabled keep their mouths shut? Are they afraid of "rocking the boat"? Are they afraid of "biting the hand that feeds them"? Are they afraid that if they speak up and speak out, they will be thought of as a radical dissenter? Are the majority of disabled along for a "free ride"? Are the majority of the disabled satisfied with the status quo? Willing to be pushed along in whatever direction someone rolls them? And what about change? Changing something for the betterment of all? Are the majority of the disabled afraid of change? Even if change meant that all facets of the disabled community would be better? Silence is golden? Silence is the absence of sound; abstinence from speech or noise; avoidance of mentioning. You don't have to shout or scream to be heard.....BUT...you do have to BREAK THE SILENCE. That is the only way you will be heard.
Insurance Discrimination:
Disability Rights Advocates, a non-profit organization, has brought a class action against a life insurance company for discriminating against persons with disabilities who seek life insurance. If you have been denied life insurance or had to pay higher than usual rates because of your disability, please contact us.We urgently need to speak with you. Please call us at 510-273-8644, fax us at 510-273-8511, or E-mail at DRALegal@ix.netcom.com.
Guy Wallace
Disability Rights AdvocatesNotice of United Artists Theater Disability Access Settlement Fund:
TO: Persons Who Use a Wheelchair or Have Another Mobility Disability and Attended or Attempted to Attend Certain United Artists Theaters
Because of a recent settlement of a disability class action suit, you may be entitled to a share of a settlement fund if you have a mobility disability and attended or attempted to attend certain United Artists theaters and encountered access barriers including a lack of wheelchair seating spaces, lack of adequate seats for people who are semi-ambulatory (persons using crutches, canes, etc.), segregated seating, lack of companion seating, restroom access barriers, or inadequate path of travel.
For further information and to request a claim form, call toll free to The Disability Rights Education and Defense Fund (DREDF), 1-800-306-2779 All claims must be received by November 12, 1996, to be considered.
In closing, I will say that the MDA Telethon this year was a major improvement over the past. This was a change for the good, but they still have a way to go.
Stay well ALL.....see you next month and send us your submissions!
Victoria E. Brown
James F. Heida, Jr.
Tracy L. Mankins
Spike Spikberg
Fred Temple
