Judging a Book by it's Cover *rant*

[wilkeliza]

May I point out that people are referring to the bus driver but the OP referred to the person helping to load the bus, not the bus driver. After telling the person directing people onto the bus that we would wait for the next one, his exact response was "really?" We laughed it off and said yes we will wait. He looked at the people on the bus and said to them "Guess these two don't want to stand, whatever" then as the bus left, he says "why couldn't you stand? You're young" Not that it is any of his business, I said "well I've had two brain surgeries" He snickered and said "standing's good for you" and I just responded with "not for me" and said "well now you have to wait so."

I went back and fixed mine from driver to loader.

 

[sleepingbean]

I'm sorry it is a struggle. My eldest has a somewhat invisible disability. I mean you can see when her joints dislocate if you know what that looks like, but the average person just sees a normal healthy kid without realizing she is falling apart and putting herself back together again and again each day. I sometimes consider it may be worthwhile to carry pamphlets and maybe even awareness magnets with me and if anyone stops us at any time, I can educate them and hope to recruit them in our efforts of educating others. At least I'd feel like I was doing something positive. My kid, however, would not want to have to tell someone (a stranger) about her disabilities. She doesn't even want to tell her friends. It's hard. I hope it will be better for you next time.

 

[Mad4Dizne]

I always hope that the WDW Magic makes all people act like human beings, but evidently not true. Sorry to hear of your bad experiences

 

[RobynPrincess]

I'm really sorry these things happened to you OP. I had a rather unpleasant interaction with a bus driver (not loader) involving him humiliating me in front of a full to the brim bus. I completely empathise with you, I also look fine and healthy. I've taken to customising my ECV as that way people will know it's mine and not rented so won't automatically assume I'm just 'fat and lazy' and renting it for our trip. I've also sworn never again to staying without a hire car after that bus incident, I never want to be made to feel like that again

 

[bidnow5]

We always rent a car after the bus driver made comments about how if I would have just gotten on the bus like everyone else he wouldn't be running late the first time I took a scooter on the bus. It was a very old scooter and he had trouble figuring out how to tie it down

 

[sunshinehighway]

I really don't see the big deal with the walkway thing. It can get extremely crowded over by the Crystal Palace and it was that CMs job to keep the area clear. So many people probably walk slowly hoping the CM will leave and they can just stay there. In that situation, you were probably treated like any other seemingly able bodied guest. CMs can't just assume everyone has a disability.

 

[Princess_Nikki]

Heartbreaking story, OP, so sorry for your experiences. I truly despise when people say ugly things and really don't know any truth.

When really, we are all always fighting some sort of battle. I always tell my kids this, but being young, 5 and 7, I still catch them pointing and asking questions out loud. It's embarrassing, and I always remind them to please quietly ask me a question and I'll do my best to explain. Kids are curious but grown adults should know better.

 

[MaryLovesPoohBear]

I carry multiple copies of an information sheet about my illness.

Yes, I simply look lazy and fat. But the fat came after the illness.

When someone gives me an eye roll or says something about me to their companions, I give them the sheet. That way they get to learn something about lupus.

No people shouldn't make comments. And no, I shouldn't have to have a sheet of information. But you know what? We all make judgements that we shouldn't. We all could learn to be a little more accepting.

My way of dealing with it, is to educate. Maybe next time they see someone a little overweight, riding a scooter, but looking otherwise healthy, they might think of me. And instead of assuming the person is lazy, they may assume the person has an invisible illness.

 

[Eeyore's Tiara]

I carry multiple copies of an information sheet about my illness.

Yes, I simply look lazy and fat. But the fat came after the illness.

When someone gives me an eye roll or says something about me to their companions, I give them the sheet. That way they get to learn something about lupus.

No people shouldn't make comments. And no, I shouldn't have to have a sheet of information. But you know what? We all make judgements that we shouldn't. We all could learn to be a little more accepting.

My way of dealing with it, is to educate. Maybe next time they see someone a little overweight, riding a scooter, but looking otherwise healthy, they might think of me. And instead of assuming the person is lazy, they may assume the person has an invisible illness.

I have seriously thought about making a cover for my scooter that explains my condition. I don't know that I would want to try to keep up with handouts… I would probably drop them or lose them. And not that anyone that is rude and dimwitted enough to scold you would take time to possibly read anything… That's too much work.

The fat did come after the medication to save my life, along with brittle bones, cottage cheese brain, and joints that no longer want to work. But it did save my life. I have a rare autoimmune that no one really knows anything about and it's silently trying to kill me. But in the meantime I'm stuck with inconsiderate and judgmental people every day. I just try to consider it another part of my disease that I have to deal with.

Thankfully I haven't met a lot of rude CM's, but there have been a few so I feel your pain on that one. I went back to the hotel and cried myself silly the first couple of times I had to use a scooter.

And i do use my own handicap van to go back and forth to the parks, I know that's not always available for everyone, but it makes a difference in how I feel about my time at Disney. I drive halfway across the country to make sure I have my own transportation.

 

[limabeanmom2003]

I carry multiple copies of an information sheet about my illness. Yes, I simply look lazy and fat. But the fat came after the illness. When someone gives me an eye roll or says something about me to their companions, I give them the sheet. That way they get to learn something about lupus. No people shouldn't make comments. And no, I shouldn't have to have a sheet of information. But you know what? We all make judgements that we shouldn't. We all could learn to be a little more accepting. My way of dealing with it, is to educate. Maybe next time they see someone a little overweight, riding a scooter, but looking otherwise healthy, they might think of me. And instead of assuming the person is lazy, they may assume the person has an invisible illness.

What a great way to respond to negativity!

 

[TwizzleMouse]

OP- I am so sorry that you have to deal with this. I genuinely sympathize because I live every day with multiple invisible illnesses, I too look like a regular healthy person on the outside and hear the comments and see the nasty eye rolls and looks judging me. I tell people if they would like we could go through everything I am silently dealing with and they can live through it themselves for a day if they would like. They'll usually shut up at that point.

Also, despite what some other poster is saying on here, you don't have to develop a "thicker skin." You deal with enough crap. People like that need to develop empathy and hope they never have to deal with an invisible illness themselves.

Hugs to you.

 

[Betty Rohrer]

I have a daughter who at 35 had a heart attack and had to have a device to shock her heart implanted. on her last trip it was guests that caused her problems. she is not allowed to hold her young son because of her device. can not tell you how many complained because she would not hold her son on buses. we did tell one complainer that you did not want to be touching her while standing next to her. can not say it was because of the complainer but her device did have to shock her. as the shocks go it was a mild one for her but should have seen the guest's face when she was also shocked

 

[North of Mouse]

I have a daughter who at 35 had a heart attack and had to have a device to shock her heart implanted. on her last trip it was guests that caused her problems. she is not allowed to hold her young son because of her device. can not tell you how many complained because she would not hold her son on buses. we did tell one complainer that you did not want to be touching her while standing next to her. can not say it was because of the complainer but her device did have to shock her. as the shocks go it was a mild one for her but should have seen the guest's face when she was also shocked

What! I've known many people with pacemakers, but never heard of one shocking someone else - or even the recipient feeling the shock - never heard of anyone even knowing 'when' it happens as it's immediate (that's the whole point of them).

 

[Betty Rohrer]

hers is not just a pacemaker but more I am not sure of the term but she was told by her doctor to be very careful while holding her young son as it could kill him if hers went off while he was touching her. we have always let people standing near her on transportation based on that. she does not know when it will go off but does know how she feels before it has happened in the past

 

[seshat0120]

It sounds like an implanted defibrillator. A family friend had one of those.

 

[disneyholic family]

I love WDW, it is my escape from all reality, and over time I'm sure you'll get to learn that about me! But... There is one thing that turns me away from Disney every... single... time.

I am young, 21 years old, and when you look at me I look like a perfectly normal 21 year old girl. And that's where most people are wrong. I actually suffer from multiple brain/neurological conditions, a heart deformity/disease, severe anxiety, arthritis, severe scoliosis, and many other things going on. I've had 2 brain surgeries, 2 surgeries on my left hip that needs a replacement (which they won't do because I am still too young for it to be covered), stomach surgery, and ENT surgery.
I also have spine surgery, heart surgery, and a possible brain surgery in my near future.
I fight for my life every day, but I manage, I am always in constant pain and always fatigued.

My DBF and I went to Disney in February and we had dinner at Crystal Palace. Everything was running pretty late and the waiter was nowhere to be found, but it was right before the fireworks. The fireworks are my thing! I can NOT miss the fireworks EVER! So after we finally paid the check we had 2 minutes to get outside to see the fireworks. We had been in the parks all day, and I was in the wheelchair, but I opted to experience the fireworks on my own two feet! (I can be very stubborn) When we got outside, we were in an apparent "walkway" and instead of a CM nicely telling us, I got screamed at. My DBF and I started to walk away to get out of the walkway, and I have an a very clear limp and cannot walk fast, yet the CM followed us still screaming that we need to move. Can you say embarrassed?! We went back to the room and I cried the rest of the night. Regardless, the firework show was ruined. WDW guest relations were very apologetic and I was fine. Not everyone can be perfect!

Then it happened again... We stayed this past week and I was confined to a wheelchair the entire time, I was just in the hospital for 4 days the week before for my heart not functioning correctly, and not getting enough oxygen.
One night, we decided to go to BLT to watch the Wishes firework show, since we had only seen the Hollowishes show this visit.
We had relaxed all day, I felt I would be capable of traveling there without the chair and feel some sense of normalcy in my favorite place in the world. We saw the show and decided to go to Boardwalk and explore a bit. We decided once we got to the resort, we would get a temporary chair and take a taxi back to our resort (AKL-KV). We took a bus from Contemporary to MK and transferred to a bus to BWV. While we were waiting for the bus to BWV, the line was really long. I kept squeezing my DBF's hand because I couldn't catch my breath, but I was okay. We got to the front of the line, and the bus was PACKED. There was no way I could stand on a crowded, moving bus so we decided to wait for the next one and lean on the rail, and try to catch my breath. (Yeah I know, I should've been in the wheelchair, but I told you I'm stubborn! :little angel:
After telling the person directing people onto the bus that we would wait for the next one, his exact response was "really?" We laughed it off and said yes we will wait. He looked at the people on the bus and said to them "Guess these two don't want to stand, whatever" then as the bus left, he says "why couldn't you stand? You're young" Not that it is any of his business, I said "well I've had two brain surgeries" He snickered and said "standing's good for you" and I just responded with "not for me" and said "well now you have to wait so."
Again... The embarrassment was unreal, tears welled up in my eyes and my DBF just held me.

I get the fact that I look perfectly "fine" but in reality, my body is very ill. I just cannot believe that this continues to be an issue for me, comments and questioning are so embarrassing. I didn't ask to be sick, I was born this way. I'm wondering if I need to start carrying documentation on me. Besides all of the dirty looks I get from guests while in the wheelchair, or kids asking their parents why do I get a wheelchair and their answers are "she doesn't want to walk" HA!

Sorry for such a long story, I guess the moral is as old as time, never judge a book by it's cover!

so sorry you encountered these people...
what i want to write about these people will be censored by the dis software, but suffice to say i'd like to describe them by a long string of not very nice words...

you're right - you do NOT deserve that kind of treatment!!!

 

[madaboutMickey]

What! I've known many people with pacemakers, but never heard of one shocking someone else - or even the recipient feeling the shock - never heard of anyone even knowing 'when' it happens as it's immediate (that's the whole point of them).

There are pacemakers with defibrillators also. A friend of mine had an episode where his defibrillator "malfunctioned", while he was in Europe on business. The shock knocked him to the floor and continued to shock him numerous times trying to get his heart rhythm back to normal. A doctor happened to be near by and was trying to help him until the ambulance got there. The shock brought the doctor to the floor also but he held on to my friend. They were both shocked over 50 times but the doctor never let go of him.

 

[lost*in*cyberspace]

.....

Also, despite what some other poster is saying on here, you don't have to develop a "thicker skin." You deal with enough crap. People like that need to develop empathy and hope they never have to deal with an invisible illness themselves.

Hugs to you.

I am the one who posted that and I hope that when you say, "people like that need to develop empathy," that you are not referring to me. Don't worry though, my feelings aren't hurt by something a stranger says.

My advice was sound. As I already posted, the only person you can control is you. You cannot change some stranger's actions or thoughts. If you chose to go home crying every time a stranger is rude or unkind, letting it ruin your life, that's your choice. Sounds like a pretty miserable way to live.

 

[TwizzleMouse]

I am the one who posted that and I hope that when you say, "people like that need to develop empathy," that you are not referring to me. Don't worry though, my feelings aren't hurt by something a stranger says.

My advice was sound. As I already posted, the only person you can control is you. You cannot change some stranger's actions or thoughts. If you chose to go home crying every time a stranger is rude or unkind, letting it ruin your life, that's your choice. Sounds like a pretty miserable way to live.

If you want to say I was referring to you, then so be it. (Obviously if my comment was about you or not, it struck a chord in someone that claims: "Things strangers say don't bother him/her." And for what it's worth, I wasn't the only one on here referring to someone here needing to learn empathy.
I never said that she should run home and cry every time someone says something to her but trust me when I say that if people were constantly judging you on something that you couldn't control and making it known to you rudely, it starts to bother even the toughest of us. Should she go home and cry about it? No, but saying she shouldn't let it bother her when you've never walked a day in her shoes isn't the answer either.

 

[North of Mouse]

hers is not just a pacemaker but more I am not sure of the term but she was told by her doctor to be very careful while holding her young son as it could kill him if hers went off while he was touching her. we have always let people standing near her on transportation based on that. she does not know when it will go off but does know how she feels before it has happened in the past

There are pacemakers with defibibulators also. A friend of mine had an episode while he was in Europe on business. The shock knocked him to the floor and continued to shock him numerous times trying to get his heart rhythm back to normal. A doctor happened to be near by and was trying to help him until the ambulance got there. The shock brought the doctor to the floor also but he held on to my friend. They were both shocked over 50 times but the doctor never let go of him.

OK, because I don't know a thing about these devices, I went online to research them because what y'all are saying make me 'very' nervous!

The articles that I saw say that anyone touching such a person when the device goes off feels 'nothing' or 'very little' so you would not be aware of it at all. The person 'with' the defibrillator would get the jolt and feel real pain for a 'fraction' of a second. This is very good news - maybe you 2 posters need to get better informed. It would not 'kill' or in anyway 'harm' a baby or anyone else. Can you even imagine if something like this was 'loose' on the unsuspecting public - no way would they allow this!! A lawsuit waiting to happen!