Experiences at wdw with the "stare"

[buzz for boys]

I have a very strange question and im hoping that there are people on here that can help.
My 9 yr old DS has quite an obvious facial disfigurement following treatment for cancer and we are trying to get our heads round how to handle his obvious discomfort at the stares and questions we encounter everytime we leave the house.
My question is Do you encounter the stares and questions whilst in wdw or is everyone busy having a magical time that we will just fade into the background as we so desperatly want to???


Thanks Louise x

 

[freepixie]

Quite a few years ago we traveled to WDW with my aunt who was recovering from shingles over her left eye - it looked like a big black scab that took up most of her eyebrow and beyond. I think she faced a few stares, but not much.

It seemed to me more stares happened when we would be waiting in long lines and the people in front or behind would then notice, stare, and whisper. But then walking thru the parks, everyone is in their own state of where to go next, nobody really noticed, and we kind of just blended in with everyone.

I hope that helps, and hopefully more people will be by to share their experiences as well

 

[KPeveler]

I really do not notice if people stare at me or my sister (half her face is paralyzed) - We are too busy having fun!

Generally the only comments I get (whether at disney or at home) are from children - adults usually know how to keep their comments to themselves... when a kids asks a question, I usually answer it with a short answer. I want kids to see ME and then the wheelchair, rather than just seeing the wheelchair alone. So I like letting kids know I am a person who happens to use a wheelchair.

I am sure that there will be a few rude people wherever you go, but in general I have not had any real problems with them!

 

[kaytieeldr]

You say he's obviously uncomfortable with the stares. Do you think by the time you go, he'd be up to responding to rude stares with "I had cancer. I'm grateful (glad/happy) to be alive." in an appropriate tone of voice, or would one of the adults or older children (if any) in your party be willing to be assertive on his behalf?

Otherwise, just practice rude stares in case you need to reflect back at the rude people; or take a tip from Ann Landers: "I'll excuse you for asking if you'll excuse me for not answering" (or maybe she used the word 'forgive' instead of 'excuse'). Just be discreet.

 

[3BoysRDisneyFreaks]

I think a lot of people are in their own worlds most of the time when they are walking around WDW. I think that is how most of them get run over by strollers & ECV's.
I would think while in line people might notice. I am sure younger kids will stare and will most likely will say something. As a parent of a child who would say something (because this has happened before) I would say something basic and then allow the person with the 'disability' respond more.
My kids are big at asking about people in wheelchairs. My simple answer is 'because they can't walk and need help getting around'. They are usually fine with the simple response.
Maybe I would work up a simple response for questions.
As for stares I would just stare and smile back or if I was feeling sassy stare back at them and stick my tough out.


Sarah

 

[dvcterry]

I don't watch much television but I remember a scene out of Forest Gump when he's walking with his mother and he's say's 'momma they're staring at me~and Sally Field says~something like well of course they are if we were all the same we would all be walking around with leg braces. The point I'm trying to make is my son has been ill most of his life & we have spent a great deal of time in infusion room. We know the stare. But you are there to enjoy your vacation and spend time as a family. In the infusion room there is a hat cabinet, which gave me the idea of offering to buy him a hat of his choice while on vacation (which also protects against the sun). Enjoy your time together!

 

[bookwormde]

Anything that is different will get extra attention, whether it a different appearance, different levels of mobility or different social patterns, and that is OK, just let your child know that if we were all the same it would be very boring and it does not mean that most people (or at least the ones worth worrying about) think any less of someone who is different, they are just naturally curious.
Enjoy your trip, it is a good opportunity to appreciate what is important in life and not worry about superficialities.
bookwormde

 

[tish9774]

My husband has MS and uses an ECV while in Disney. When he tries to board a bus, people will almost ALWAYS comment on how he doesn't "look like he is disabled". It happens a few times a day and it gets frustrating for him. He stumbles when he tries to walk and people have accused him of being drunk.
We combat these issues by answering the questions they have before they can be asked. My husband has several t-shirts with phrases like, "If you don't think I look sick, you should see my MRI!" and "My immune system went crazy and all I got was this scooter and first seat on the bus!".
Try to have humor in it. I have a friend with a face disfigurement and she has a shirt that reads, "If you think I look bad, you should see what the idiot who stared at me all day looks like." and my favorite " Turn around and mind your business...I am not wondering why you are such an idiot!"
Recognize that there are ignorant people who love Disney as much as we do. Blow them off and have a blast!!!

Tish

 

[vanillasoftserve]

I don't have any advice, just wanted to send you and your family well wishes. I am a childhood cancer survivor and know how difficult the treatment and its effects are. Have a wonderful trip

 

[Bete]

and if you can deal with a verbal statement as someone else posted this should work. I don't think anyone will be rude; they are probably just curious about it.

Another way would be to have business style cards preprinted about the disfigurement being caused by cancer. You can do this on a home printer. When someone stares or asks give them a business card. This might be a nicer way to go for your son. You can use the business card style approach anywhere including back home. Don't put his name on this card, either. You can start out by saying my son had cancer......

Also, you can consider a GAC. I'm not sure how much this will help, but you might avoid some ride lines that would cause more people to notice.

Although, personally I wouldn't do it you could also dress him up as a pirate or whatever and he could wear a mask. Pirate costumes are popular in MK because of the Pirates of the Carribean ride. I'm not sure how old he is or if this is appropriate. I wouldn't hide it, but I'm not in your shoes or his.

 

[bidnow5]

I just talked to a real nice guy with Sturge-Weber syndrome a couple of weeks ago it's a very obvious purple facial disfigurement. He is a huge Disney nut because he gets to have fun without all of the stares and questions he gets everywhere else. He said he still gets some stares and questions but very few compared to his everyday life.
I hope it goes great for him. I use a mobility scooter I don't look disabled and I am a big guy. I have very few problems in Disney but everywhere else I get stares and comments about being lazy. We went to Walmart last night and I had a family following me talking about me. I don't like to cause problems so I left the store but in Disney I think I don't pay as much attention but hardly ever notice people staring

 

[videogal1]

We combat these issues by answering the questions they have before they can be asked. My husband has several t-shirts with phrases like, "If you don't think I look sick, you should see my MRI!" and "My immune system went crazy and all I got was this scooter and first seat on the bus!".


Tish

My favorite T- shirt phrase was "I may not be perfect but parts of me are excellent." It got me past the period of time when I was most self-conscious.

Then I started using a service dog...now HE gets all the stares. Nobody cares about ME but everyone stops to talk about dogs. My dog, their dog, their late aunt's dog, dogs they have heard of...yak, yak, yak...during that conversation time, however, their attitude, as well as the attitude of those nearby who were staring changes and they stop staring. So, now I just get friendly...If someone nearby is really bugging me I just say "Hi."

 

[buzz for boys]

Oh thank you all so much !!
There is so much useful information there not just for wdw but also for the day to day activities.
Im afraid im not really up for hiding his disfigurement I believe it gives him the message that he has got to be ashamed of being different if you see what I mean. He lost his eye and for various reasons cant wear a prostethic eye so as you acn imagine it cause all sorts of issues with eye contact as peopel dont know where to look ! He started to wear sunglasses whenhe was just 2 yrs old as he recognised that with glasses on people would treat him normal and without they didnt like to interact.

I guess we have to be a lot stronger at answering peoples questions but its so hard not to get emotional when we do it that I try so hard to shy away you from. I particularly love the phrase " Ill forgive you for asking if you forgive me for not answering !!"

I think that is definatly the answer im adopting until Im stronger mentally to cope with the questions that follow following the statement he had cancer !

Im also going to print a few buisness cards as on a bad day this elimantes the need to converse at all and will definatly will work for my ds who point blank doesnt have the confidence to answer at all !!

So many thanks for all the support and answers im so very grateful

 

[Janell]

I wanted to wish you and your family best wishes and hope you have a magical trip.

I think the business cards are a great idea. For the days your family isn't up to chatting but it also helps others know whats going on. Not that its your place to educate people. People will ask, no matter what or say comments that they shouldn't. And the stairs, I know those. Ive used an ECV for Scoliosis pain and I hate the stairs and comments. They say Im young and just lazy, having no clue what pain I am really in and how lucky they are to not have the pain. Anyhow, I hope the business cards help your family to have a better time.

Have a wonderful time on your trip.

And thank you tish9774, for the t-shirt idea. I may try that.

 

[KPeveler]

My wife just suggested a trip to the Pirate League to get face paint, fake scars, and an eye patch. Basically he can dress up as a pirate, wear an eye patch with fake scars all day, and no one will be looking at anything other than the cool makeup/costume.

I am a fan of celebrating our disabilities/illnesses/differences - it will never be "cool" he had cancer and lost an eye, but sometimes you can make what stinks come with cool accessories.

My needing the use of a power wheelchair just to function will never be cool, but I figured since I have it, I am getting green and purple running lights, head lights, the Haunted mansion license plate, and I am calling it my Doom Buggy! Doesn't make my condition any "cooler" but it helps me deal with the everyday reality.

 

[buzz for boys]

My wife just suggested a trip to the Pirate League to get face paint, fake scars, and an eye patch. Basically he can dress up as a pirate, wear an eye patch with fake scars all day, and no one will be looking at anything other than the cool makeup/costume.

I am a fan of celebrating our disabilities/illnesses/differences - it will never be "cool" he had cancer and lost an eye, but sometimes you can make what stinks come with cool accessories.

My needing the use of a power wheelchair just to function will never be cool, but I figured since I have it, I am getting green and purple running lights, head lights, the Haunted mansion license plate, and I am calling it my Doom Buggy! Doesn't make my condition any "cooler" but it helps me deal with the everyday reality.

Exactly our thoughts its never sit comfortable the reason why he is who he is but he is still here and thats worth celbrating in our books !!

I was going to book all 4 of my kids into pirate league but Im unsure wether they would be comfortable painting ds face as so was going to phone them first and see what they say before I book !! I dont think he will wear an eye patch as he associates eye patchs with surgery but I do think he will enjoy the face painting and dress up and who knows it may just mean that he feels much more comfortable walking around the world !!

Thank you for returning with the suggestion I will defiantly phone them now

 

[gingerblue]

Otherwise, just practice rude stares in case you need to reflect back at the rude people; or take a tip from Ann Landers: "I'll excuse you for asking if you'll excuse me for not answering" (or maybe she used the word 'forgive' instead of 'excuse'). Just be discreet.

I have to admit, I'd be THRILLED if people asked me why I limped rather than just stared at me as I lurched by. I guess people are afraid of offending (or of me doing something scary), but it would be so much easier to let curious people know what's going on and put them at ease, which seems to happen when people hear me joking about my disability (I take great comfort in making light of it).

I have an adopted daughter from Vietnam and I LOVE when people stop and ask us questions about her and where she's from. It's really lovely because people become engaged rather than just standing there and saying "wait a second, which one of these things are not like the other?" But then again, there are a lot of adoptive families who don't like that, so I guess it's all a personal thing.

I should get a shirt printed that says "ask me, I don't bite!" or something.

One thing, though- I've noticed with myself that even though *I* am disabled and have an open attitude towards it, there have been several times when I have seen a disabled person and my eyes automatically went to the place of their disability and then immediately flicked away. And then the moment passed so quickly and my opportunity to make eye contact and smile at them would be gone and I'd feel miserable about it for the rest of the day.

Staring at different things is sort of an automatic response that is part of being human and although I REALLY despise it when people do it to me and when I do it to others(you'd think after 36 years of this, I'd NOT do that) I don't mean anything by it.

I'm trying to be more understanding of people.

All that said, I am enormously self-conscious and Disney is one of my favorite places in the world simply because it's the one place where I feel like I blend in. There's such a mash of people, and so many of them are there to have fun, too, and they are kind and happy and it's just a place of comfort. I can go and do everything that everyone else can (which is why I'm a fan of the GAC and ECVs in the parks!) and just be a kid again. I feel like I'm "less" disabled at Disney than I am anywhere else in the world. People are really interested more in the attractions than each other.

Don't know if that makes sense. I hope you and your son have a marvelous time. What a brave guy- I hope you have the most amazing vacation!

 

[KPeveler]

Exactly our thoughts its never sit comfortable the reason why he is who he is but he is still here and thats worth celbrating in our books !!

I was going to book all 4 of my kids into pirate league but Im unsure wether they would be comfortable painting ds face as so was going to phone them first and see what they say before I book !! I dont think he will wear an eye patch as he associates eye patchs with surgery but I do think he will enjoy the face painting and dress up and who knows it may just mean that he feels much more comfortable walking around the world !!

Thank you for returning with the suggestion I will defiantly phone them now

If all four of your kids get cool pirate eye patches, he may be more comfortable wearing it - I bet no one notices a thing about him if he is in a herd of pirate-eye-patch-wearing children

 

[buzz for boys]

I have to admit, I'd be THRILLED if people asked me why I limped rather than just stared at me as I lurched by. I guess people are afraid of offending (or of me doing something scary), but it would be so much easier to let curious people know what's going on and put them at ease, which seems to happen when people hear me joking about my disability (I take great comfort in making light of it).

I have an adopted daughter from Vietnam and I LOVE when people stop and ask us questions about her and where she's from. It's really lovely because people become engaged rather than just standing there and saying "wait a second, which one of these things are not like the other?" But then again, there are a lot of adoptive families who don't like that, so I guess it's all a personal thing.

I should get a shirt printed that says "ask me, I don't bite!" or something.

One thing, though- I've noticed with myself that even though *I* am disabled and have an open attitude towards it, there have been several times when I have seen a disabled person and my eyes automatically went to the place of their disability and then immediately flicked away. And then the moment passed so quickly and my opportunity to make eye contact and smile at them would be gone and I'd feel miserable about it for the rest of the day.

Staring at different things is sort of an automatic response that is part of being human and although I REALLY despise it when people do it to me and when I do it to others(you'd think after 36 years of this, I'd NOT do that) I don't mean anything by it.

I'm trying to be more understanding of people.

All that said, I am enormously self-conscious and Disney is one of my favorite places in the world simply because it's the one place where I feel like I blend in. There's such a mash of people, and so many of them are there to have fun, too, and they are kind and happy and it's just a place of comfort. I can go and do everything that everyone else can (which is why I'm a fan of the GAC and ECVs in the parks!) and just be a kid again. I feel like I'm "less" disabled at Disney than I am anywhere else in the world. People are really interested more in the attractions than each other.

Don't know if that makes sense. I hope you and your son have a marvelous time. What a brave guy- I hope you have the most amazing vacation!

It does make perfect sense and yes I too find that I do the second glance at people and I accept that that is human nature. My problem with people is when it becomes a full on stare and then they feel its ok to come and ask us why he is like he is. I normally answer politely with he had cancer and had to have his eye removed !!
That in my mind should be enough but it seems that it then opens up a conversation with peole about how we knew he had cancer how long was his treatment ?? etc etc and a quick trip to buy milk and bread turns into an hour long conversation with a stranger whil ds is squirming at the conversation.
It must be down to personal choice because I personally hate the questions people inflict on us everytime we leave the house maybe in time ill feel differently and be willing to answer.
Thank you for taking teh time to reply I have a new renowned hope that we can dodge the questions whilst we are at wdw and im so glad i asked the question now

 

[Schmeck]

Please be careful about handing out business cards - that's a form of solicitation, not allowed on WDW property. It would be awful to have an issue occur during a family vacation because of a misunderstanding like that!