Much ado lately. Mr. R. Butera has been appointed AOL's disAbled representative and will meet with Steve Case, later this month, to discuss a "DisaAbled Discount" and other ways to make AOL more disAbled user friendly. Please e-mail me, within the week, with any ideas you may have that would help the disAbled facilitate better use of AOL, so I may present them to Mr. Butera to take with him.
Within this newsletter you will find a submission by TimFlan, a member of NAOTD. I personally want to thank Tim for this thought provoking, beautifully written piece. Please take the time to read it. And our thanks again, to Fred Temple, creator and editor of the MS Runway. Another great article, Fred.
************************************************* SPEAK UP...SPEAK OUT - As a result of talking with Greyhound Bus Lines about some problems encountered for people with disabilities using their mode of transportation, we are happy to announce that Greyhound now offers a FREE TICKET to a "companion" or "PCA" traveling with disabled. Several other policy changes also were made to make the use of Greyhound easier. For those interested, Click on REPLY....SUBJECT: Greyhound TEXT FIELD: Greyhound. You will receive a copy of the letter we received from the President and CEO of Greyhound, stating these policies.
NAOTD/AccessHOPE's coffers are not plentiful, but we manage to come up with money to help some of our members purchase necessary adaptive aids from time to time. We recently purchased a Touche Touch Pad for a member disabled by a stroke: Dale12344. If you have a "real" need for an adaptive aid; such as shower seat, grab bars, some devices such as the Touch Pad that would cost under $75, please present it to your Board of Directors for vote and action. We'll do whatever we can to help you remain as independent as possible. Tcha! And did ya think we were just sitting here doing nothing but running our mouths? ;D
THE ADVOCATE - ELECTION DAY is quickly approaching. Excercise your rights.....VOTE for the candidate of your choice! If you choose not to vote, don't sit and bemoan whoever takes over the Oval Office and the policy changes they will make.
HAVE A CARE...For Your Health - Flu season is coming. GET YOUR SHOT
************************************************* THE MS RUNWAY - FTemple917 - Bad moods! I have been doing a lot of thinking about moods lately. "Lately" being about six months. (OK, I don't catch on too quickly.) It seems that right now the American paradigm seems to be that the ideal person with a chronic illness 'suffers in silence'. We all have heard it, "What a great person she/he was. All the illnesses he had, and yet never uttered a word of complaint." May I be blunt? Bullshit! That 'kind of thinking is enough to put a saint in a bad mood. If we suffer silently, that is good. To complain about it is bad. Huh? So my mouth is the determining factor as to whether or not I am a 'good' person. No mention of the pain of the disability, that is not relevant. So somehow pain is good, but only if I accept it without even saying 'ouch'. Huh?
If I am willing to 'suffer in silence' then I am actively condemming everyone else with a disability to their own status quo. It seems to me that this type of behavior is seen as positive because some higher 'power', always The Creator of the Universe, desires not only that we suffer, but do so without complaint. The reasoning behind this is vague. Acceptance of our 'lot in life' is always better than change. We view most old things as being, de facto, better than the new. 'Old' wealth is somehow earned, new wealth is 'luck'. The old is familiar and therefore comfortable, the new is strange and disturbing. The status quo is, although we may not admit it, desired even if painful.
I do not accept the status quo, I do not accept, for example, the Veteran's Administration refusing to prescribe Avonex, an AMA approved drug, for any reason other than it is medically not advisable. (Doctor, please don't tell me again that an AMA approved drug is 'too difficult' to get the VA to approve!) This is NOT good medical practice, and I DARE any medical doctor to argue otherwise!
There is also a 'shame' factor to a disability, and this is one thing we must take great care to watch out for. There was a time, not too long ago, when ABs would cross the street rather than pass a person in a wheelchair. Now we are more 'enlightened'. Now, society has given us official, sort of, guidelines about how to deal with the disabled. Even to the politically correct form of address to use toward disabled people. AND WE ACCEPT IT. So rather than deal with the disability, ABs and the disabled alike, have a shield to hide behind. There is such a strong element of denial at work in this, that most of us are not aware of it. So let me state my first law of disability.
POLITICAL CORRECTNESS IS ALWAYS A FORM OF DENIAL!
It is for exactly this reaon that I am suspect of the motives of people who, for example, dislike the term "MSer". I always wonder about the person's degree of denial. When I ask why the term 'MSer' is so objectional, the usual reply is, "Because I am a person with Multiple Sclerosis," usually spoken with great emphasis. How clinical!
Just some of my thoughts. I'd sure to like to hear yours. FTemple917@aol.com
************************************************* PARALYMPIC THOUGHTS-by Tim Flannigan
As I sit in the press room overlooking Olympic Stadium on the last night of Paralympic competition, I watch the officials struggle against the weather to conclude the evening's events. My experiences of the last nine days have been mixed and emotional. They included the wonderful Opening Ceremonies where Vice President Gore declared the Games officially open. This was followed by a rousing and very entertaining show hosted by Christopher Reeve; starring Carly Simon, Aritha Franklin, and Liza Minella. It played to a packed house. Olympic Stadium hasn't even come close to one-tenth its capacity since. It was capped by the dramatic lighting of the torch by Mark Welman after his dramatic ascent up the side of the structure on a rope, the same way he climbed El Capitan in Yosemite National Park. I think of the competition in athletics, swimming, basketball, volleyball, and 15 other sports--15 of the 19 sports are also Olympic sports. It was competition made no less dramatic by the disabilities of the participants. This is, afterall, the Paralympics, not the Special Olympics. There are no hugs for coming in second. And there was the warm feeling of being with other disabled people whom you know have had like experiences and therefore share a common bond.
It would be easy to be lulled into thinking that the everyday problems of disability had been suspended for these 10 days if it weren't for the other experiences I have had--the cab driver who refused to take me because of my service dog despite my protests that she was breaking federal law; the woman who paid my breakfast tab but none of the tabs of the able-bodied patrons; the feelings I got as I pushed through what was left of Olympic Centennial Park to find that only the street vendors, the fountains, and the Olympic store were left open for us. The rest of it could be viewed in various stages of disassembly, pieces of it waiting on flatbeds to be hauled away. I couldn't help feeling that the Olympic organizers didn't feel we were worth the time, money and effort it would have taken to keep the entertainment part of the park open another 10 days. And what do I say to the woman I met whose cousin is just now learning her independent living skills at age 35 after being labeled as mentally retarded for most of her life, and therefore never educated? What resources do I give her in a state where the only disabled person I know is busy running for the United States Senate? What a contrast!
But the memories that will stay with me the longest are those of the disabled children I've seen. I saw them at the fountains squealing with glee as the wheelchairs they occupied were rolled through the fountains. Thankfully, their parents didn't tell them that wheelchairs rust and wheelchairs cost money as my father would have told me. I saw them in the stadium watching disabled adults doing things they may have been told was impossible for people with disabilities. They have so few role models to tell them what's possible. The relatively few times that disabled people are portrayed in the media, they are often played by able-bodied actors. A prime example was the movie "My Left Foot" about a very talented Irishman with cerebral palsy, well-known interenationally in the disabled community. Not only was the part given to an able-bodied actor little-known in the United States at that time, but they gave him an Oscar as well! In a natural effort to protect their disabled children from future hurts, parents and other family members try to lower their disabled children's expectations--often trampling dreams in the process. How many fights did my parents and I have when I was a teenager over my intense desire to go into television and their equally intense assertions that I was living in a dream world? There were no role models to arbitrate this dispute. One can only hope that what was seen here this week by the disabled children and the parents they brought will give them a standard by which to measure their dreams and fears.
Providing a vehicle for people with disabilities who are athletically inclined to channel their energies and display their talents in an international arena is in and of itself a laudable accomplishment, but if that's all these games achieve, they will have missed their potential by a wide margin. For a group that has suffered a perennial unemployment rate of 65-70%, has a 35% drop-out rate, and in many areas of the United States lacks accessible housing, transportation, and other basic services, these games will have been a failure if they do not increase by a wide margin the awareness of the potential of disabled people that is going to waste by failing to acknowledge and meet these needs. I can only hope that the children in the stands this week--both disabled and able-bodied--will grow-up to accept one another's differences in a way that is more careful about the labels we put on children that follow them into adulthood; that sees the value of leaving facilities open for all to enjoy, and that provides the facilities and services necessary to allow everyone to make their own contribution to society, no matter how different the form of that contribution may be. If these children begin to accomplish even a small fraction of this goal, the Games I have witnessed here in the last 10 days will have been an overwhelming success
Stay well ALL....take care.
"Don't be afraid to dream today, what you can create tomorrow." Unknown
NAOTD/AccessHOPE
