I don't "look" sick

[brat]

Sorry you are going through this.

Remember just because you get a wheelchair or ECV does not mean your butt is stuck in it all day. With the wheelchair you can use it as a walker, a seat while waiting in line and a carry-all as can your family members. With the ECV they have safety rules(kids ect.), which others here can give you.

We use T-shirts that say our medical issues, for Disney I made ones with letters cut out of Disney fabric. I cut some letters out of villians just to make a point in some words.

This is your familys time to have fun do not let anyone steal that from you.

 

[nancycg56]

I have a foot problem and ended up in a wheelchair for our most recent trip. I don't recall anyone giving me any looks and if they did, that's their problem not mine. The wheelchair saved me from ending up not being able to walk at all.

Use a wheelchair or an ECV and have the time of your life!

 

[AJKMOM]

I have autism awareness shirts I wear in the parks, and no one has ever commented about my son. You do not need a doctors note to get a Guest Assistance Card, in fact they won't look at it if you try to show it.

Practice this "I have a brain disease, you dumb*#@#".

Just kidding, maybe.

 

[martyshoney]

I just found out that my kids will have a fall break at Halloween so we are going to push our trip back until then! Maybe by that point I will be a little stronger and have a little more stamina, but if not I will NOT feel guilty about using a wheelchair or an ECV, thanks to you all!
I just found a shirt on a website that I am going to order, it says, "I survived brain surgery, what's your excuse?" Gotta LOVE that one, I might have to get it in different colors and style for every day that I am there!

 

[mickey&minniealways]

Go to the DISigns board. There are a lot of good designers there that can help with a Tshirt saying just what you want.

 

[pbrim]

Practice this "I have a brain disease, you dumb*#@#".

Just kidding, maybe.

Totally. If it starts getting you down, think about this: I was married for far too many years to a man who, among other things, was obsessed with making sure no-one got something he didn't have. For example, when our power went out one night in the middle of the summer, but our neighbor still had power, every time he heard the neighbors AC kick on, he had the urge to go beat up on the neighbor for daring to be able to sleep when he couldn't. He had all kinds of excessive restrictions put on him as a kid, and when we started talking about kids, his concern was not to enable them to have a better childhood than he did, but to make sure they didn't get any freedoms he missed. (Thank $Diety I got out before we had kids!) So, believe me, I know the kind of people we are talking about.

These are people who, at Disney World (!), can't think of anything better to do with their time and energy than to scrutinze the people around them and get their knickers in a knot if they think someone is getting help they aren't "entitled" to. How miserable they must be! How miserable they must be making their families! (Trust me, it is exhausting to deal with these kind of people.) Spare them a moment of pity, and then get on with your life. Enjoy your family and your vacation!

 

[mickey&minniealways]

Unfortunatly there are losts of hidden disabilities that people just don't understand. DD15 falls into this catagory. She is Mild to Moderate MR with global deficiencies. The new buzz word I guess it Cognitivly Impared since MR is so missused these days. She is a typical HS freshman. Problem is she is not. In most ways she is but as she puts it she "she learns differently". At times it comes across as being very young. If she gets overtired or stressed a meltdown can occur. I have been yelled at by more people being told that I am a bad parent etc. That my DD should learn better manners and that it is uncalled for for a girl her age to throw a tamtrum. And she can give any 5 yr old a run for their money. I have been know to tell off a few rude people. Most of the time I just tell them unless you want the details of the situation then don't make comments. This usually shuts them up. I find though that while at Disney most people are more accomadating. Fortunatly things have gotten easier as she gets older. A friend who has twins, one is high functioning autisic the other has ausbergers, solves it this way. Her son wears a t shirt ( also has an iron on transfer on a backpack) that says " Sorry if I am rude but I am Autistic, what's your excuse." He thinks that this is the funniest thing in the world. He would wear this every day of the week if his mother would let him .

 

[Talking Hands]

I am thinking of a t-shirt that says, I'm not ignoring you, I just don't hear you.
And I am going to wear a bunch of my ASL ILY t-shirts

 

[tiggspring]

Unfortunatly there are losts of hidden disabilities that people just don't understand. DD15 falls into this catagory. She is Mild to Moderate MR with global deficiencies. The new buzz word I guess it Cognitivly Impared since MR is so missused these days. She is a typical HS freshman. Problem is she is not. In most ways she is but as she puts it she "she learns differently". At times it comes across as being very young. If she gets overtired or stressed a meltdown can occur. I have been yelled at by more people being told that I am a bad parent etc. That my DD should learn better manners and that it is uncalled for for a girl her age to throw a tamtrum. And she can give any 5 yr old a run for their money. I have been know to tell off a few rude people. Most of the time I just tell them unless you want the details of the situation then don't make comments. This usually shuts them up. I find though that while at Disney most people are more accomadating. Fortunatly things have gotten easier as she gets older. A friend who has twins, one is high functioning autisic the other has ausbergers, solves it this way. Her son wears a t shirt ( also has an iron on transfer on a backpack) that says " Sorry if I am rude but I am Autistic, what's your excuse." He thinks that this is the funniest thing in the world. He would wear this every day of the week if his mother would let him .

 

[Singledad]

A friend who has twins, one is high functioning autisic the other has ausbergers, solves it this way. Her son wears a t shirt ( also has an iron on transfer on a backpack) that says " Sorry if I am rude but I am Autistic, what's your excuse." He thinks that this is the funniest thing in the world. He would wear this every day of the week if his mother would let him .

Oh my !! YES! I wish I had something similar for my DD, that is the best!

I never thought about trying to get a plain backpack and sticking a transfer on that... that may help with other things I want to do... (like a big LGMH... one that can't be lost) thanks for the idea!

 

[KPeveler]

I don't look sick at all - or at least I didn't until recently. There are times I explain that I have a rare genetic illness, an autoimmune disease, and a rare complication from that rare genetic disorder. More often I will say nothing or come up with a snarky (but Disney appropriate) response. I have told people:

"Nothing has worked the same since the alien abduction."

"I was injured in the AFC title game" (I am a 5 foot tall, 110 lb female)

"I have a horribly contagious disease and I am going to die any minute now" (and then I cough dramatically)

"No, there is nothing wrong with me. Wheelchair? What wheelchair? I don't use a wheelchair." (and I say this while sitting in my $5000 custom made manual wheelchair)

I figure if people are going to be stupid and mind my business, then I get to be snarky in response.

 

[Singledad]

I have a question for everyone.... I often want to start a conversation with those in chairs, or seem have have different ablities, but I have had people snap at me for this in the past...

I just have a small obession with all things medical... how can I ask about you and your life without coming off rude? I want to know more about how life effects you I want to know about your surgery, and how you deal with those that DON"T understand, and assume your healthy...

I normally end up being though of as someone giving a 'glare' or a 'rude stare' when really I am looking at you because I want to talk to you and enjoy your company. I grew up with a sister with many medical problems and even at the very end, we were getting people who PARKED US IN at the store, thinking no one in the car could *possibly* be disabled. (despite the handicap card, and popping open the trunk so they could see her very much used and abused manual) so I understand and want to convey that understanding..
am I just doomed to be the one that says nothing, for fear I seem like I am offensive for wanting to know? I know that isn't the only part of you as a person, and I don't mean it that way...

 

[martyshoney]

I have a question for everyone.... I often want to start a conversation with those in chairs, or seem have have different ablities, but I have had people snap at me for this in the past...

I just have a small obession with all things medical... how can I ask about you and your life without coming off rude? I want to know more about how life effects you I want to know about your surgery, and how you deal with those that DON"T understand, and assume your healthy...

I normally end up being though of as someone giving a 'glare' or a 'rude stare' when really I am looking at you because I want to talk to you and enjoy your company. I grew up with a sister with many medical problems and even at the very end, we were getting people who PARKED US IN at the store, thinking no one in the car could *possibly* be disabled. (despite the handicap card, and popping open the trunk so they could see her very much used and abused manual) so I understand and want to convey that understanding..
am I just doomed to be the one that says nothing, for fear I seem like I am offensive for wanting to know? I know that isn't the only part of you as a person, and I don't mean it that way...

I am very glad you brought this up as I never thought that the person looking might actually be curious or truly want to know what is up. I will have to sit here and think about this for a few minutes before I answer b/c I am not really sure. Maybe you could just simply say, "Is everything going to be okay?" Or "So glad that you have a way to enjoy Disney even with a medical condition, it's such a magical place, isn't it?" If someone would approach me like that I would be appreciative of the fact they took the time to ask about me and not just assume that I am a lazy no good whatever.
I ordered a baseball cap today from a friend and she is going to embroider the "I had brain surgery, what's your excuse?" on it b/c I know I will need that in the summer months!

 

[minkydog]

Hi all! I am sure this has been discussed over and over again but this is something new to me. I was diagnosed with a brain disease in Aug. of last year and had brain surgery in Dec. This condition causes me lots of fatigue and horrible neck pain if I stand for too long. My plan is to "tough it out" for as long as I can but I am sure at some point I will have to give in and get a wheelchair. The problem is I don't look sick at all, people have told me point blank to my face that I am fine b/c I look so healthy. How do I handle the "looks" in the park that are saying I am taking advantage of something? I don't want my magic ruined b/c I can't tolerate the pain but I also don't want it ruined by others Thanks for any advice you can give me in this matter as I just don't know what to do. I am even thinking about cancelling our trip over this. We were supposed to go this past Oct. but cancelled it because of my diagnosis so to cancel again would tear my kids up.

Frankly, it's nobody's business why you need the scooter. Don't cancel your trip. Why do you care what random strangers think, who don't know you or love you, who don't pay your bills or raise your kids? That's right--you don't! So you let them think whatever they want--you have no control over someone else's thoughts.

I do sympathize with you, though. My DH has an invisible autoimmune disorder which affects his lungs and heart. To look at him you'd never know he was so ill, but he only has about 30% lung capacity so every exertion costs him. Fatigue is just a part of daily life around here. I insisted when we were at WDW that he HAD to use the ECV or we couldn't go. DH was like you--he didn't want people to think he was faking. Well, that lasted just about long enough for us to go up Main Street. As we passed the Walt & Mickey statue he turned to me and thanked me for making him use the ECV. He realized in the first 20 minutes that there was NO WAY he would be able to fully enjoy the day without relying on the ECV, and consequently, the rest of us would enjoy the day because we weren't being held back by him trying to be macho.

 

[brat]

Singledad

Please start with "hello", most of the time I know when the look is just curious not rudeness.Most of the time I will stop and enjoy getting to know new friends, If I am short with you it is that I need to get back to my kids.I also have my days when I am not up to answering questions many times, I do have cards that explain for those days. I try to put T-shirts on our family with info about our medical issues when we are away from home.

Some of my kids it is very easy to see they have a disability but some still look normal.I think for me it is often the tone people use when asking that can trigger my joke response instead of the real one.

Thank you for looking pass my chair and seeing a person.

 

[peemagg]

I agree with brat. If you came up to me and asked in a friendly way and explaining why you are wanting to know, I would be more likely to answer you.

I know quite often kids often just stare. If I say "Hi" to them then they are likely to ask and I will answer something like " my legs just don't work right". It seems to satisfy most of them (except my nephew who sees me all the time and still always asks. LOL).

A smile instead of a stare can also open up a conversation.

 

[KPeveler]

What bothers me is when people start a conversation with "What's wrong with you?" or "What's your disability?" Not even a hello first! I do find that I am more likely to answer a question if we had perhaps talked about something else first. I always mention the ride we are waiting for when in Disney, and sometimes mention something about accessiblity of it, or how I transfer or whatever. Taking about myself first brings others to talk.

Oh, one thing that does drive me crazy is when people tell me how lucky I am to be able to "enjoy disney, even when I am handicap" or "wow, sitting down all day must be awesome." While I have accepted my disability, I rarely think I am
"lucky" to be sick.

Talking about how well Disney handles all types of disabilties, though, is always acceptable! You can talk about how happy you are to be able to vacation so easily and that gives them the opportunity to share about themselves without asking direct questions.

 

[dclfun]

I have a question for everyone.... I often want to start a conversation with those in chairs, or seem have have different ablities, but I have had people snap at me for this in the past...

I just have a small obession with all things medical... how can I ask about you and your life without coming off rude? I want to know more about how life effects you I want to know about your surgery, and how you deal with those that DON"T understand, and assume your healthy...

I normally end up being though of as someone giving a 'glare' or a 'rude stare' when really I am looking at you because I want to talk to you and enjoy your company. I grew up with a sister with many medical problems and even at the very end, we were getting people who PARKED US IN at the store, thinking no one in the car could *possibly* be disabled. (despite the handicap card, and popping open the trunk so they could see her very much used and abused manual) so I understand and want to convey that understanding..
am I just doomed to be the one that says nothing, for fear I seem like I am offensive for wanting to know? I know that isn't the only part of you as a person, and I don't mean it that way...

For myself, I am on vacation when I'm at WDW and I DO NOT want to have a conversation about my disability and how it affects me, or my service dog and what she does for me. It gets really, really old....all day long. Just remember that if you wouldn't approach a total stranger in the parks who is not sitting in a w/c or who doesn't have a SD and ask about their life, then don't ask someone who IS sitting in a w/c or who has a SD about theirs. It's just simple courtesy and respect.---Kathy

 

[dclfun]

Nothing wrong with the t-shirt idea! I think you will get quite a few "congrats!" and a lot less complaints BUT don't do it just for the complainers sake. You should be proud to wear that shirt!

My son has Down syndrome and autism. We have little business cards that address his autism and when necessary, we pull them out and give them to people so they understand. You could do that and when someone gives you a hard time, give him a card - they'll feel pretty bad about it, I would hope.

Make sure you have a doctor's note for getting a GAC - Guest Assistance Card. It should be stated what your limits are so that the GAC is filled out appropriately. Enjoy your trip!

Just wanted to mention that you do not need a doctor's note for requesting a GAC. The CM's will not read it and a Dr's diagnosis or mention of your 'limits" may not be anything they can accommodate. If you're using a W/C then you probably will not need a GAC. Although it's intended to alert CM's if there are invisible needs, anyone with stamina issues are told to rent a w/c or ECV as there is more walking between attractions than in the queues. I hope you have a great trip and I doubt anyone will even notice that you're using a w/c. As there are no advantages or way to bypass lines by renting a w/c there's no reason for anyone to suspect that you're trying to "cheat" when you "don't look sick". Above all, have fun!--Kathy

 

[livndisney]

For myself, I am on vacation when I'm at WDW and I DO NOT want to have a conversation about my disability and how it affects me, or my service dog and what she does for me. It gets really, really old....all day long. Just remember that if you wouldn't approach a total stranger in the parks who is not sitting in a w/c or who doesn't have a SD and ask about their life, then don't ask someone who IS sitting in a w/c or who has a SD about theirs. It's just simple courtesy and respect.---Kathy

I totally agree with Kathy. I am on vacation and don't want to be someone's "lesson" for the day.