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Sjogrens Topics => Living With Sjogren's => Topic started by: Carolina on March 15, 2015, 07:01:20 AM

Title: People with invisible disabilities fight for understanding.
Post by: Carolina on March 15, 2015, 07:01:20 AM
Here's a story from NPR.

npr.org/2015/03/08/391517412/people-with-invisible-disabilities-fight-for-understanding?utm_source=npr_newsletter&utm_medium=email&utm_content=20150315&utm_campaign=mostemailed&utm_term=nprnews

Hugs, Elaine
Title: Re: People with invisible disabilities fight for understanding.
Post by: Ashewoman on March 15, 2015, 11:14:27 AM
Nice article. I was thinking recently of getting a bumper sticker printed up that says, "You can have my handicapped parking space if you will also take the invisible disability that allows me to qualify for it." But that's only because I get some disparaging looks in the parking lot usually from older people who don't have one and think they have to be more physically qualified that I could be at 44 with sometimes blue punk rock hair. LOL Yup cool people hurt too! And if you don't think that's cool well okay people who have modern fashion sense also hurt.  LOL Whatever right?

But I swear I'm going to get a pair of PJs printed up for the purpose of fed ex, UPS and the post man delivery people who knock on my door and then stare because I'm still in my jammies that says, "Don't hate me just because I am wearing pjs at this hour." LMAO At least as soon as I get the energy the same time I'm thinking about it and have extra money waiting to be spent... LOL
Title: Re: People with invisible disabilities fight for understanding.
Post by: litliwlowa on March 15, 2015, 11:22:28 AM
Good and timely article - not to go off topic but it is a timely article given it is also Brain Injury Awareness month.

Invisible disabilities "bite" - my speech therapist got on me about using "idioms" a lot in my speech. Well gee whiz, when it comes to clarifying my difficulties (and I would include SJS in that context), unfortunately far too many "norms" out there don't even come close to "getting it." So over the past 30 years, I developed the habit of idioms which in my view was more of an analogy - as in paint the whole picture in a manner the other person can connect the dots to. Although maybe "idiom" is the right term when dealing with "idiots" ;)

Ashewoman - don't get me started on the handicapped parking space rant...LOL Been there done that so much I just ignore those people.
Title: Re: People with invisible disabilities fight for understanding.
Post by: Ashewoman on March 15, 2015, 01:15:22 PM
I hear ya. I also have TBI in addition to SJS and explaining any of my weirdness with that... well not only do people think I'm making it up but I can't really find the words anyway without inventing new ones. LOL Like my new fav... Lostednessrobotrage -- what happens when my GPS and I have a loud argument with the windows down and pedestrians are laughing at us from the sidewalk.
Title: Re: People with invisible disabilities fight for understanding.
Post by: litliwlowa on March 15, 2015, 01:41:10 PM
Quote from: Ashewoman on March 15, 2015, 01:15:22 PM
I hear ya. I also have TBI in addition to SJS and explaining any of my weirdness with that... well not only do people think I'm making it up but I can't really find the words anyway without inventing new ones. LOL Like my new fav... Lostednessrobotrage -- what happens when my GPS and I have a loud argument with the windows down and pedestrians are laughing at us from the sidewalk.

I just tell mine to shut up. I keep forgetting to figure out how to adjust the volume. Why do those things have computerized female voices anyway? Do the manufacturers figure only men use them?

If I hit a detour, the doggone thing is slooooooooow to pick up that I have already passed the turn that was closed and it keeps telling me "turn left" "turn left"...then it FINALLY "gets it" and says "recalculating recalculating recalculating." Good thing they have signs to follow on detours or I'd still be trying to find my way out of that pickle.

At least a guy's voice might be less irritating.

Yes, you also having TBI - double whammy on the invisible disABLities.