Guest Finrussak Posted October 8, 2005 Report Share Posted October 8, 2005 I, too have been on the wrong end of stares and comments like "well, you LOOK OK to me" when using scooters or trying to reserve wheelchairs, etc. and I got to thinking about HOW we can educate people and at same time mention dysautonomia....I have worked on an open letter to customer service reps and businesses simply stating that many people have "invisible" infirmities and that when we ask for scooters etc it is because we NEED them; not because we want to take them from others, or are lazy. I also added that to question the person is humiliating and embarrassing and then we are put in the awkward position of either walking out or having to explain what is wrong with us, patently unfair. I also suggest that a better policy is to smile and hand over the key and allow the person requesting help to decide if and when they need it.I am planning on sending it to the local newspaper editorial pages to ask if they would print it.I signed my name on the bottom.Oh yeah I also said in the letter that many have invisible illnesses and conditions "like heart condtions, dysautonomias, and muscle weakness illnesses" as an example, purpously mentioning "dysauto".To the editor I wrote that I ask for their help in printing the letter to educate those who may not realize this and so that those of us with "invisible" health condtions may participate more fully within the community without the embarrassment or humiliation of being questioned just because we "look good".[i can email the letters to anyone wanting to comment, or even copy and use in their own local newspapers!!!]what do you guys think?????? Quote Link to comment Share on other sites More sharing options...
Ernie Posted October 9, 2005 Report Share Posted October 9, 2005 Hi Finette,I think it is a great idea. It's good to be proactive. Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted October 9, 2005 Report Share Posted October 9, 2005 I think it's a good idea, although for some reason, no one has ever questioned whether or not I'm sick. I think it's my cane. -Lauren Quote Link to comment Share on other sites More sharing options...
taylortotmom Posted October 9, 2005 Report Share Posted October 9, 2005 Go for it girl- you've got nothing to lose.Carmen Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted October 9, 2005 Report Share Posted October 9, 2005 I think that that is a wonderful idea.. and you should run with it.. the more education and public awareness that we can get out to the public is great.. Quote Link to comment Share on other sites More sharing options...
Poohbear Posted October 9, 2005 Report Share Posted October 9, 2005 Great idea. I also like the cards that dinet sells that we can pass out to people. Quote Link to comment Share on other sites More sharing options...
briarrose Posted October 9, 2005 Report Share Posted October 9, 2005 Great idea! I would love a copy.You might check out this website toohttp://www.mychronicillness.com/invisibleillness/home.htm Quote Link to comment Share on other sites More sharing options...
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