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Author Topic: So I was refused admittance to my flight two days before Christmas
Orincoro
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If you were reading closely, or if you cared, you'd probably realize the answer is: nothing extra.

And even if it was something, we have laws to protect people with disabilities.

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scholarette
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On invisible diseases, when my mom and I went to Disneyland, she rented a scooter. She has a bunch of medical problems and had just has surgery. Even with the scooter, when we used the handicap lines, some of the workers acted like everyone in the line was trying to pull a fast one and just skip the lines. And in our case, the disease wasnt invisible. Though my mom is overweight so they might have assumed the scooter was just out of laziness since people immediately assume fat and lazy are the same.

We used to have someone here who was very active with handicap rights. Sndrake? He might have some suggestions if one of the regulars still has contact info.

ETA: his website is www.notdeadyet.org

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Shigosei
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Shanna, I sympathize with the invisible illness thing. My condition isn't obvious and doesn't really stop me from doing any specific tasks -- I just can't do as many things before I get tired. It sounds like you have some good plans for avoiding this sort of thing in the future, and I wish you the best of luck.
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Emreecheek
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Shanna, I really hope the airline listens to you. Their behavior was unnecessarily othering and ableist. I'm glad your Christmas wasn't ruined. Because that sounds like a very bracing experience.
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Shigs
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I've had ketoacidosis and had to choose between ICU and going to work and paying my rent. Sometimes life is hard and you have to make tough choices.
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Shanna
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And always should a person make their own medical choices based on their own specific condition and needs. We should also fight for the right of people to not have to choose between health care and a roof over their head. I've done the whole eat ramen for a month to pay for my medications. This year I delayed a checkup so I could buy Xmas presents. But I refuse to sit back and act like we as a society can't or shouldn't do better.

But I applaud you for making your own decisions regarding your health and would not recommend you take any action other than what you know is best for you.

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Noemon
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Shanna, I'm sorry that you had to deal with that from the airline.
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Emreecheek
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quote:
Originally posted by Shigs:
I've had ketoacidosis and had to choose between ICU and going to work and paying my rent. Sometimes life is hard and you have to make tough choices.

Which did you choose?

I'm going to say it was the wrong one.

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theamazeeaz
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quote:
Originally posted by Shanna:

I had put my medications in my checked bag so I would have to worry about all of them at security.

NEVER NEVER NEVER NEVER NEVER NEVER NEVER NEVER NEVER NEVER NEVER NEVER check meds.
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Orincoro
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quote:
Originally posted by Shigs:
I've had ketoacidosis and had to choose between ICU and going to work and paying my rent. Sometimes life is hard and you have to make tough choices.

Are you an alcoholic, by chance?
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Shigs
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Emree - I went to work. Because the only thing worse then being sick without insurance, is being sick without insurance while also being homeless. I think I made the right choice, despite the fact that that period of my life probably took fifteen to twenty years off of my lifespan. At least.

Orincoro - I've never been much of a drinker. A hangover is bad, a hangover compounded by an extremely high blood sugar level is about a hundred times worse. When this happened, I couldn't even afford test strips to test my blood levels regularly, and the result, eventually, was ketoacidosis.

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Orincoro
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quote:
Originally posted by Shigs:
Emree - I went to work. Because the only thing worse then being sick without insurance, is being sick without insurance while also being homeless.

Actually, you're probably wrong on this: indigence has its advantages in the American system: it's only once you have been depleted of everything that the system is actually willing to consider paying for your treatment. No matter that it will now cost everyone a whole lot more to treat you than it would have to help you before things got so bad.

I wonder what your views are on socialized medicine, given your experience. 20 years were taken off your lifespan, you claim- would you rather have had the option, at the time, of getting subsidized treatment, even had it meant higher taxes and government interference in medical decisions?


And by the way, as a total aside, I think you're crazy if you really did choose to work instead of having yourself treated for chronically high blood sugar. My father is now fully disabled, at a painfully young age, due to complications of type 1 diabetes; and a lot of that damage occurred before the technology to test blood sugar outside a clinical environment existed. These are the days when Type 1 diabetics would walk around with levels like 200-300mg/dl on a daily basis, and inject themselves with a set amount of insulin twice a day (which, without the ability to test blood sugar, can be extremely dangerous).

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Shigs
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I was living like that, injections two or three times a day without testing, for about two and a half years. I'm twenty eight, and portions of my legs and feet are permanently numb. I've managed to find full time work, with benefits, but the occasional emergency expense can still throw me in that boat.

My father is an American citizen, but I was born in the United Kingdom, and we moved here when I was nine. There's a lot to like about this country, but the one thing that makes me wish we had stayed is the healthcare system.

My viewpoint is obviously biased, but I think the system here is monstrous. Every other western country has it, and it works perfectly fine in them all. I would gladly pay more in taxes for socialized medicine, and I think people who morally object to such a thing are anti-social at a fundamental level.

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Shanna
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quote:
Originally posted by scholarette:
On invisible diseases, when my mom and I went to Disneyland, she rented a scooter. She has a bunch of medical problems and had just has surgery. Even with the scooter, when we used the handicap lines, some of the workers acted like everyone in the line was trying to pull a fast one and just skip the lines. And in our case, the disease wasnt invisible. Though my mom is overweight so they might have assumed the scooter was just out of laziness since people immediately assume fat and lazy are the same.

Well, that's disappointing to hear. My mom and I have been trying to plan a mini-family vacation to go visit the Wizarding World of Harry Potter with maybe a quick stop at Disneyworld. Everything I had read hinted at Disney being more accommodating than Universal Studios. Of course, she's still resisting setting a date because of my health. Both myself and my doctor (who also is a chronic fainter) have a very "it is what it is" attitude to our episodes. We know our recovery techniques and its not like it'll kill us. The most dangerous event for me was a year ago when I had an IV inserted after an 8-hour fast. My heart stopped for 23 seconds before spontaneously restarting. A few weeks ago I decided to test my new resilience by getting my ear cartilage pierced. Took the necessary precautions and came out the other end without even feeling dizzy. Weird triggers do pop up for me but I don't want to live my entire life afraid of a 5% chance of smacking my head on the ground and giving a few people a good scare.

quote:
How much money do you think it costs your employer to have to keep you over someone who isn't disabled?
It would actually be pretty interesting to do the math to find out how much money they'd have to spend to train a new hire to the point where I'm at. In my position as head of my department, there is only a single person (one of my bosses, who is unlikely to step down to fill my job) who knows how to do half my job. Many of my new restrictions actually refer to tasks outside my job requirements. I am one of only three non-manager employees who could do every single job at our location including several jobs that are above my pay grade. There are only two departments in my location with concrete rather than carpet floors. The first is in an area that is loud and very triggering (hence my ban) and I'm still allowed access to the second as long as I am not there alone for an extended period of time. Everything else is going to be special organizational training with my lead boss because she's going to help me find way to cope with some of my memory troubles. There's also a few accommodations in regards to limited early morning shifts and limiting physical work after meals when I am most at risk for an episode. I should be able to do everything within my job requirements but its going to take some time to find new ways to do certain tasks.

Shigs, I have a younger brother will type 1 diabetes and it breaks my heart to hear about the sacrifices to your health that you've chosen to make. I'm glad that our country is finally making the early steps into healthcare reform but I really wish it would hurry up so it could be more of a benefit to yourself and others who constantly dreading the next hospital bill.

I really don't know where I would be without having my parents as an emergency back-up. I mean, I've done some real damage to my credit score having to choose between the electric bill and medical bills. A recent round of blood work, even after insurance, came out to more than I make in a week and when you live paycheck to paycheck, you just pay what you can and as you go and hope the collectors don't hunt you down. I still remember walking into my appointment for my MRI, back when two different doctors were convinced my episodes were seizures, and calling my mom sobbing because they wanted a initial payment that was more than half my monthly income. She had them charge her over the phone and I really don't know what I would have done without them there.

The way we handle illness in the country is a nightmare. We take people who are feeling scared and overwhelmed and physically miserable and ask them to take on ridiculously high bills and endless insurance fights while dealing with a general public that is either throwing mountains of pity or disgust at them.

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Shigs
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What's really great, is that even with an insurance plan, you still have co-pays for tests and hospital visits. Not always small ones. It adds up quickly.

Shanna - I'm glad that you can get those accomendations. When I was part time, my family and I were in a really bad spot. I needed full time, and if I had asked for special treatment, or called in sick, I wouldn't have gotten the promotion. There are laws, but it's awfully hard to prove a case.

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Fuzzy
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I can sympathise, Shanna. I actually have similar experiences (with fainting, not with airports), albeit less serious.

I've been fainting (or nearly fainting) once or twice a year since my early teens (I'm now in my early 30s). Never for the usual reasons (low blood suger, getting up too quickly etc). Also never seems to happen when I'm getting exercise - usually when sitting down, actually. Sometimes I end up completely unconscious and wake up on the floor. Sometimes I just get to the point of loss of vision and near loss of hearing, without quite falling unconscious. It often (but not always) seems to have psychological triggers (e.g. worrying about fainting can actually cause me to faint). After lying down for a bit it comes right and I'm back to normal within an hour or two.

But I still find it a bit terrifying at the time - wondering whether I'll ever wake up again.

The few times I saw a doctor or nurse after it happened, they essentially said "it's nothing", without offering any explanation as to why I would faint like this when no-one else I knew at the time did. So I've never been officially diagnosed with anything.

Then a while ago I found out my boss has a condition that sounds exactly like yours (where his heart briefly slows or stops beating, causing loss of consciousness, and then comes right on its own as soon as he's on the ground). I still don't know if my symptoms have the same cause, but I guess it's not as rare as I thought. I just hope I don't end up in an ambulance like he did.

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Teshi
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quote:
My viewpoint is obviously biased, but I think the system here is monstrous.
Yes. The NHS is by no means perfect, or even "excellent". Maybe it's not even "good" in certain areas, especially with the freaking recession cuts. But at the very least, you have the opportunity to manage basic conditions like diabetes for little to no cost.
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Shanna
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Fuzzy, you may have a sensitive vasovagal nerve. Are you ever triggered by pain? Triggered by scary situations?

For instance, since I started fainting I have always had my out-of-the-blue faints but sometimes mine are situational. Like, when I got my first B12 injection they did it while I was standing. I felt fine but then I toppled over like a tree. I have similar reactions to pain (like stubbing my toe) or heightened emotional situations (like when a customer curses me out at work.)

Most people will have a faint (aka vasovagal syncope event) atleast once in their life. Brought on by a needle or the sight of blood or something fear-related. Some people are more sensitive to it than others.

Depending on how often it happens, there may not be anything a doctor can do. Its only when my episodes began to happen more often (several in a month, sometimes several in a week) that we scheduled a number of heart monitors and then a tilt table test which records what actually happens to a body during a faint. The most common drugs they use for fainters are beta-blockers. Each drug in the class works differently depending on your individual symptoms and I went through about six different ones before I found one that works and doesn't have any wild side-effects. For me, it sort of works by blocking some of the receptors can cause my system to freak out. I also couple it with steroids and a ridiculous number of supplements.

The various fainting disorders aren't that rare though while they all look alike from the outside, they can be very different. Some people are just chronic fainters. But I have a chronically low heart rate coupled with fatigue, memory issues, trouble sleeping, and poor body temperature regulation, which is more common in people with malfunctioning autonomic nervous systems. I actually started seeing my doctor because he was recommended by a coworker/friend who had just been diagnosed with gastroparesis which is a form of dysautonomia that causes the stomach to become paralyzed.

Thank goodness I found him cause I was getting so disheartened working with cardiologists who just wanted to poke around in my heart or throw drugs at me. Specialists who are willing to treat full body conditions are hard to find. The leading doctors in our speciality have wait-lists topping a year. I still occasionally have run-ins with doctors who tell me nonsense like, only girls get fainting disorders or you'll grow out of it or its because you don't exercise. Would have loved to hear them tell that to the now former-marathon runners and recent male war veterans in my support groups.

Fun fact: One of the guys from that kids' band The Wiggles had to leave for awhile because he was diagnosed with POTS (the high heart rate version of my disorder.)

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Fuzzy
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quote:
Originally posted by Shanna:
Fuzzy, you may have a sensitive vasovagal nerve. Are you ever triggered by pain? Triggered by scary situations?

Pain - yes. Scary situations - sort of. Mild anxiety about (often hypothetical) health issues seems to be my most common trigger, rather than sudden scares or heightened emotion.

But sometimes it just happens out of the blue.

I won't seek a medical solution unless things get worse (fingers crossed). Thanks for the info!

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Aros
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When someone comes across as rude or insensitive due to ignorance, how culpable are they actually? From their perspective, they're actually the good guy. Right? And fighting the noble fight?

We just have to be patient with some people. Not everyone has all the facts. Maybe they have a disability?

And, frankly, I'm appalled at how this community is behaving toward a newcomer. Even if they're a little brash or outspoken. Like we've never seen that before.

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Misha McBride
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Ignorance and being a newcomer don't excuse the rude accusatory tone Shigs came out of the gate with, and he/she was very rightly called on it.
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Aros
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When someone stumbles, the wise response isn't to push them.
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Parkour
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the wise response is to not be gullible or otherwise give them a pass just because their intentionally shitty comment is under a new account.

And yes, the word for someone who doesn't see that shigs is trolling is "gullible"

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Aros
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Not sure if that's the case, or if Shigs was trying to broach the tangential topic of when driving privileges should be revoked due to medical conditions.

I know I disagree with many doctor's opinions on who can / can't drive. I know a severe diet / medication controlled epileptic who's allowed to drive. Sure, if they follow their diet, they may only experience one or two grand mal seizures a year. But can society trust that they'll keep to their strict medication / diet regimen? Even so, allowing one seizure a year is worse than allowing someone a free pass to drive drunk on New Years.

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Rakeesh
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It wasn't even new. And the problem wasn't, for me, ignorance or lack of tact-it was that he accused another posted of being a would-be killer behind the wheel on the basis of the notion that she was just driving without thought for others. Then, when it was pointed out, he behaved as though it hadn't been said-as though he hadn't been, in fact, ignorant himself and unfairly accusatory about a serious thing.
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rivka
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quote:
Originally posted by Aros:
Even so, allowing one seizure a year is worse than allowing someone a free pass to drive drunk on New Years.

Statistical evidence, please.
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scholarette
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why the assumption that the person will be driving when faint/seizure? Most people's body gives them some warning before doing crazy stuff. When it is rare enough, you may not recognize warning signs but chronic sufferers seem to know pretty well when they are going to have problems.
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Aros
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quote:
Originally posted by rivka:
quote:
Originally posted by Aros:
Even so, allowing one seizure a year is worse than allowing someone a free pass to drive drunk on New Years.

Statistical evidence, please.
My apology. It was merely an inference that that an incapacitating seizure would provide more impairment than a few glasses of wine. I guess we could call Mythbusters.....
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rivka
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quote:
Originally posted by Aros:
an inference that that an incapacitating seizure would provide more impairment than a few glasses of wine.

No, it was an unfounded speculation.
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rivka
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quote:
Originally posted by scholarette:
why the assumption that the person will be driving when faint/seizure?

Because otherwise Shigs -- sorry, I mean Aros -- wouldn't have anything to argue about.
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Aros
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Haha. I should adopt an alt?

No, I think he was totally wrong. I just thought it was beneath you folks to pounce like you did -- regardless of a lack of tact on Shigs's behalf. I mean . . . Orincoro was the polite one. What kind of universe is this?

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brojack17
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quote:
Originally posted by Shanna:
quote:
Originally posted by scholarette:
On invisible diseases, when my mom and I went to Disneyland, she rented a scooter. She has a bunch of medical problems and had just has surgery. Even with the scooter, when we used the handicap lines, some of the workers acted like everyone in the line was trying to pull a fast one and just skip the lines. And in our case, the disease wasnt invisible. Though my mom is overweight so they might have assumed the scooter was just out of laziness since people immediately assume fat and lazy are the same.

Well, that's disappointing to hear. My mom and I have been trying to plan a mini-family vacation to go visit the Wizarding World of Harry Potter with maybe a quick stop at Disneyworld. Everything I had read hinted at Disney being more accommodating than Universal Studios. Of course, she's still resisting setting a date because of my health. Both myself and my doctor (who also is a chronic fainter) have a very "it is what it is" attitude to our episodes. We know our recovery techniques and its not like it'll kill us. The most dangerous event for me was a year ago when I had an IV inserted after an 8-hour fast. My heart stopped for 23 seconds before spontaneously restarting. A few weeks ago I decided to test my new resilience by getting my ear cartilage pierced. Took the necessary precautions and came out the other end without even feeling dizzy. Weird triggers do pop up for me but I don't want to live my entire life afraid of a 5% chance of smacking my head on the ground and giving a few people a good scare.
I don't want to discount the encounter scholarette had at Disneyland, but DW and DL are two COMPLETELY different places. The first time we went to DW, my wife was 7 mos pregnant. The only way and reason we went is because I was in Orlando for a conference and it made it affordable. We rented a scooter and everyone was more than helpful. At least as far as the staff went. We would get looks and sighs from peple in line when we would get special treatment, but so what. Go do what you need to do and rent a scooter. The workers will be great to you. Don't worry about the other people.
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Rakeesh
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It was not simply a lack of tact. It was when Shigs directly asserted that Shanna was behaving in a grossly negligent, dangerous way by choosing to drive-with all the attendant moral impairment that would imply. Then, when informed that she had arrived at that decision with her doctor and had said so first responded that she hadn't said that and then said nothing afterwards when it was shown she had-which he would've known anyway had he read the post to begin with.

Just accusing that she had been so stupid and negligent without seeking clarification would be bad, but likely wouldn't have garnered such response. It took the rest of it.

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Samprimary
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quote:
Originally posted by Aros:
No, I think he was totally wrong. I just thought it was beneath you folks to pounce like you did -- regardless of a lack of tact on Shigs's behalf.

If anybody posted a comment like that here, with a shaming assailment of a person who has opened up about their disability and shared the details about a struggle they are dealing with, and put it so mockingly as "The most interesting part of the story by far was the bit where the woman suffered random faints and thought herself capable of driving a motor vehicle." ur hur hur hur, this isn't "trying to broach the tangential topic," it's a lazy ignorant insult. Echoing the sentiments of my obvious alt sockpuppet parkour (recently featured in Year of Fail video compilations and an ER Near You!) if you aren't already treating shigs as a troll probably-alt, ur gullible k
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Aros
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*Self-examination* Maybe I'm gullible? Or a troll? I should avoid direct sunlight just in case.

I guess this is an example of the popular sentiment- "Welcome to Hatrack . . . you're wrong."

I wonder why the community's been shrinking over the years?

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Samprimary
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I have explained it in detail and the answer is assuredly not that people being total jerks are responded to as jerks even if they are new usernames
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Shigs
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I was responding honestly to her arrogance. As if people met on the street shouldn't be wondering if she should be driving when they meet the Amazing Fainting Woman. The explanation she gave us is detailed, and it sounds as if she's being responsible. But every person she meets should have already debriefed themselves on Shanna's illness? I think not. I've dealt with as bad or worse my entire life, and she should probably just get a thicker skin.

I appreciate the defense, Aros, but the opinions of the regulars here mean nothing to me. I'll write what I want to write, when I want to write it. You should be careful, though, as it looks as if The Internet Detectives are ready to declare you as my non-existant alt.

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scholarette
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Brojack17, we did disneyworld with a scooter and had no problems but that was almost a decade ago so I wasn't sure d it was passage of time or different location. Glad you guys had no problems. I am surprised at how much more I like disneyworld to Disneyland. And both I like better than hong kong Disney.
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Shanna
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Shigs, I just don't understand why you think its okay for society to continue to be ignorant and judgmental. You're right, people say and do horrible things to people with health conditions or disabilities, but I'm personally not the kind of person who is just going to be like, "well, you can't change anything."

There are several members of the family on my mother's side who are deaf and I've heard their stories about how the perception of deaf individuals has changed. When my great-uncle was growing up, people used to avoid him in public and visibly move away from him. Now his deaf grandkids tell stories about how they'll be out shopping and the cashier will know ASL. They still run into people who think they are mentally-handicapped because they are deaf, but its getting better. We've seen the same shifts in how people respond to others with diabetes or epilepsy.

Why do we allow people to use their ignorance as an excuse to be rude? You don't have to be a medical expert to look at someone who has a condition and think, "perhaps I should keep my opinions to myself as I am neither the individual in front of me nor their doctor." You just have to be a decent person.

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Aros
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My point isn't that we should excuse ignorance as a reason to be rude. Merely that being rude in response to ignorance -- rather than a conciliatory, educational attitude -- is not a solution.

Not accusing Shanna, of course. Maybe a few others...

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BlackBlade
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Shigs: If you could dial down the hostility a bit, I'd appreciate it.

----

As for those addressing Shigs, lets operate under the assumption that Shigs has an unpopular opinion, and that, while unpleasant, and even rudely expressed, is still an honest one.

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Shigs
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BlackBlade - I'll apologize for the one thing I feel kind of bad for. Sorry, Shanna, for referring to you as the AFW. Wasn't called for. Also, if I weren't a lurker, I wouldn't know you were a mod under that handle, and would likely have told you to piss off.

Shanna - You're asking strangers to blindly trust that you have your condition under control, and that you are fully aware of your limitations. No one should be able to stop you driving if you're medically cleared, sure. But why should this random person know enough about you or your condition to just trust that you won't faint behind the wheel, exactly as you did on that walkway?

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Shanna
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The whole point is that it doesn't matter what they do or do not know about medicine or myself. Its about being respectful. I live in the south so I'm used to the idea that alot of people hold alot of discriminating opinions, and I try to be grateful for the ones who atleast know to keep their mouths shut and not perpetuate ignorant, out-dated modes of thinking.

You don't say to someone in a wheelchair, "Wow! I can't believe your family lets you out of the house on your own." You don't say to someone with autism, "Wow! I can't believe you have a job."

The perceived rarity of my condition does not negate the fact that it is still a medical condition and therefore a very personal matter. My medical condition also does not negate the fact that I am still a human being deserving of basic respect and being treated with dignity.

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Emreecheek
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Why should we assume anybody doesn't have their situation under control?
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Emreecheek
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quote:
Originally posted by Shigs:
But why should this random person know enough about you or your condition to just trust that you won't faint behind the wheel, exactly as you did on that walkway?

Just for the record... You're not a random person. You're somebody who knew, I think, enough of her condition to be able to assume she wouldn't faint behind the wheel of a car. Much less be a total prat.

Do you have friends? Like, in real life?

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Shigs
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Shanna - You don't say those things to an autistic or wheelchair bound person in those situations because they can only, at most, harm themselves. A person fainting whilst driving a car, however...

Emree - The random person in question was the gentleman who originally offended Shanna. As for me, I do indeed have friends in real life. It's one reason among many why I don't have to care what any of you people think.

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Rakeesh
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For someone who doesn't care, you're making a frequent point of telling people how much you don't care.

Anyway, just so we're clear, are you now claiming that your original criticism-the one that, aside from your derogatory attitude, received the response (that you dont care about, and people here can't stop you from saying) you're reacting to-that your original criticism wasn't 'ugh, this woman who thinks she isn't a risk behind the wheel' was instead 'why do you expect these people to know you aren't a risk?'

I just wanted to clarify. You did a poor job reading Shanna's post, so there's precedent for this sort of mistake. We can check, though, to see what you actually said...

"The most interesting part of the story by far was the bit where the woman suffered random faints and thought herself capable of driving a motor vehicle."

Well, so there it is. Your initial entry (six months after registration, as your first post) was emphatically *not* to point out that she shouldn't expect strangers to have an awareness of her driving ability.

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Samprimary
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remember everyone: shigs don't care

REMEMBER he DOES NOT CARE okay

NO CARES

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Shigs
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Hey guys, did you know that I don't care?

Glad you're having as much fun as I am.

[ January 03, 2013, 09:18 PM: Message edited by: Shigs ]

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Rakeesh
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quote:
Originally posted by Shigs:
She can't even make it to the end of a boarding tunnel for a plane. She'll hurt someone eventually.

More of Shigs knowing better about Shanna's medical condition than her doctor. Also further clarification that your current stance is a flat-out lie. You weren't offering rude but potentially helpful advice on what to expect other people to think about her medical condition.
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