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View Full Version : constructive ways to deal with staring


teri
05-26-2000, 01:07 PM
We had this great thread on this board when it first started, back in March, and it got lost... anyone interested in doing it again?
How do YOU cope with staring, intrusive comments, rude questions, and other people's poor etiquette? How do you turn the situation around so that you model good coping skills and appropriate behavior? How do you respond in ways that will not be perceived as rude to people who are not being helpful or appropriate?

Wheelsie
05-26-2000, 02:46 PM
I was trying to think of some of our really good suggestion threads that got lost in the chage over thanks Teri!! /infopop/emoticons/icon_smile.gif

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SueOKW
05-26-2000, 03:18 PM
I can't wait to hear some answers - as I need help with looking classy when dealing with class-less people.... (of course, help just looking classy period would be nice too!)

One thing I do - is smile right at them - I smile all the da** time. Smile Smile Smile... I am of the hope that it teaches them that we are real people, not some kind of a floor show.

We get a lot of questions as my DS is very very cute - I have found that most of the people who ask us questions have worked with disabled kids before, and just want to connect. He has red hair - I can't tell you the number of senior citizens that rub his head for luck. (Remember it used to happen to Opie all the time in Mayberry, too.)

I don't know how to handle the 3 year old to 15 year olds. Sometimes they ask questions, sometimes they just stare...

any advice is welcome!
Sue

Tiger Fan
05-26-2000, 07:56 PM
What a great thread. I lost my hair (completely bald) a few weeks ago after my first chemo treatment. I seldom wear a hat and never a wig (my three year old said she likes me better "plain" - lol). I get lots of stares. I usually just smile right back, I feel most people don't mean to seem rude. I agree that kids sometimes are the hardest. They are honestly just curious in most cases. When I picked up my daughter today, the 4 year old class was lined up next door and one little girl yelled out, "here comes that bald lady". I just smiled and kept walking.

Piper
05-27-2000, 02:47 AM
A genuine smile works wonders! I teach in an elementary school. My "morning duty" (some of that extra work out of the classroom that we teachers do) is to monitor the front hallway. I am often the first adult that parents and students see when they enter the school. I smile and speak to everyone. If a child asks a question, I answer it as honestly as I can. If I notice one staring I might say something like, "Are you wondering why I have this crutch (forearm crutch)? I use it so I won't fall down." Usually that is all it takes. If they ask me why I fall down, I reply that my muscles don't work as well as they should. That usually does it. Fortunately, I don't have many visable fibromas, but I do have 4 small ones on my hands and several small ones on my neck and face. If someone asks about those, I tell them they are fibromas. Children rarely inquire further.

With adults, I usually tell them that I have Lupus and Neurofibromatosis and offer to share literature with them. I use it as an opportunity to educate the public on two conditions that many people do not know about.

What I have found harder to take is that within the past couple of months, two co-workers have told me that they have noticed that I have "deteriorated" or "gotten worse" over the last several years. I know that they are just voicing their concern, but I am trying to ignore that aspect as long as I can!!

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LindaDVC
05-27-2000, 05:44 AM
My husband has been in a w/c for a long time and recently got a service dog. In the past people tried not to stare and we noticed people hushing kids and looking away so they would not be rude!

Well since Ned arrived, He is a BEAUTIFUL Light Gold- Golden retreiver! We have noted everybody not only looks but they point and tell their kids to look at the pretty dog. We have people approaching and saying hello. They introduce themselves and ask about the dog.
The Attitude is so POSITIVE and friendly we have been amazed. Lots over pet the dog which Ned loves but it is such a difference you'd be amazed.


Dan has never been sensitive and we have always used comments to education NICELY /infopop/emoticons/icon_smile.gif ! I am an OT and several times people asked what Dan wants to eat at a restaurant-
I always reply I don't know what do you want and the tip relies on if they give Dan the bill! By the end of the meal most have gotten the "hints" and we have to tip!
Linda

Michelle NY
05-27-2000, 01:30 PM
I remember the thread and use to look at it often before our recent trip. I agree that a smile and an honest answer are the best esp. with kids. But if you are refering to all of the genuinely rude people who get annoyed that wheelchairs and families load first on the buses and things like that. A few time I said 1 I did not ask to have a child in a wheelchair if you'd like to change places...or a comment as such .. usually it shut them right up. In life other then Disney I have actually had former freinds complain that it is not fair that a child like my DD gets so much from our county..ie mommy& me and i get respite etc.. And again I say if you'd like to change places let me know...It really shuts them up!!!!

teri
05-27-2000, 10:43 PM
When someone is staring at one (or both) of my kids, it is usually because they really have no idea what it is they are looking at, there is a little movie going on in their head... their little computers are busy searching for the right explanation for what they are seeing, and they don't even realize that they are staring. Or they are imagining themselves in our situation... and their eyeballs are unable to move because their brain is too busy trying to compensate for the feelings they are having.
We are an adoptive family, and sometimes I find out that people are watching us because they are thinking about adoption and wondering if they could handle it - I certainly wouldn't want to be rude to them or embarrass them.
And when people make comments about the special services our kids get, I remind them that everybody gets a turn sooner or later, and when it comes their turn they will be glad that services and accomodations are available to everyone. Of course, some people just can't shut up about how unfair things are for the average folks who don't get these perks... HA!

SueOKW
05-28-2000, 03:44 PM
The whole family was at a Blockbuster Video store - DS in his Convaid Stroller -

I heard my husband say to a 3-4 year old - "He can't walk." I assumed she asked him what was wrong with Kevin. Well - don't you know about 1 minute later she came back and gave Kevin a kiss on the cheek! All spontaneous!

Just wanted to share a smile.

Judy from Boise
06-01-2000, 08:37 PM
I so agree that the key to staying a happy positive person is to credit people with good intentions. A stare is not always negative, a ignorant question is not necessarily rude. Of course we are not perfect,and will occasionaly snipe at people....but a smile and simple explanation is what everyone needs...wether or not thats what they asked for !
My biggest personal weakness is watching Down's kids, I just love those faces !

Judy from Boise
06-01-2000, 08:38 PM
I so agree that the key to staying a happy positive person is to credit people with good intentions. A stare is not always negative, a ignorant question is not necessarily rude. Of course we are not perfect,and will occasionaly snipe at people....but a smile and simple explanation is what everyone needs...wether or not thats what they asked for !
My biggest personal weakness is watching Down's kids, I just love those faces ! I also have to keep myself from staring at people signing, as it is so fun to watch.

SueOKW
06-02-2000, 03:23 AM
Teri - your post makes me remember a bittersweet moment in our life. In Jan 1991, DS was diagnosed at 6 months with CP and Infantile Spasms. In March of 1991, DH, DS and I went to a convention in a small town west of Chicago.

We went to a restaurant for dinner - DS still at this point looked like a fairly regular baby - he was very premie, so still small. I saw an adoptive family - with at least 2 kids, but I was focused on the 9 year old girl in the large w/c type stroller there. She obviously had CP.

I admit it - I kept staring. But it was the stare of one who was relieved that our future wasn't totally bleak - that people did go out together and have fun, and weren't embarressed etc. So I would catch myself staring because looking at them, I saw my future - and it was soothing to see that it wasn't going to be so terrible after all.

We still go to that convention - and if I ever see that family again, I am going to explain what I did 10 years ago... So, I guess sometimes staring, (while still extremely rude, and I shouldn't have done it), is some sort of form of therapy. That family gave me hope.

Sue

Kay1
06-06-2000, 04:32 AM
Teri's post reminded me of something, too. I had a friend in south Florida, who used to make " remarks " about all the special attention disabled kids got in school, and said that it took money away from the " normal " kids. The last time I heard from her, her daughter had just been diagnosed with a severe learning disability, and is in special education herself. I just shook my head in amazement. Lord!
Anyhow, someone posted on that old thread that it helps to wear sunglasses when using the SAP, and I've since tried that and agree

teri
06-06-2000, 08:52 AM
Oh boy, do I get that line. My kid has an inclusion aide and 3 different kinds of therapists, and with their help he is finishing kindergarten working at grade level in the middle reading group in his class. Not bad for an autistic kid with severe communication disorders, eh? But then you remember that he is in the middle reading group, which means that one third of the kids in the class are behind him in skills... you should see some of the looks we get. BUT, there is no question that their lives are less complicated, their days are smoother, their future issues are going to be different from our kids. Not only that, but they have a distinct advantage - they know how to be friends with kids with disabilities. It is a skill. The whole class has benefitted from having extra helpers and therapists, and from learning how to play nicely with kids who are different. Makes the world a better place!

slsharp
06-07-2000, 08:25 AM
My grandson is autistic and my daughter has a seizure disorder/anxity/panic disorder. I carry these special little ID cards[business type] that explains their disorders and such. Sort of like an awareness card and hand them to the person who seems overly curious [or rudely stares] and smile and say if you have any questions I will be glad to answer them!!! Also when in public we all wear buttons that say "I Love Someone with Autism" to put a hault on anyone staring during behavior episodes/unusual conversations/stereotypical movements and such or questioning special priviledges my grandson gets. Besides I want to make the world more aware of what autism and epilepsy really is so people WILL understand that my kids are MY kids and are special in all ways. That they are not some weird child to stare at or make rude comments about. Most of the time I consider those people to be the WEIRD ones!!!
Sandra

Wheelsie
06-07-2000, 03:09 PM
Just lurking around to see what new ideas we've all come up with about "Ye Ole Stare" as it were LOL /infopop/emoticons/icon_smile.gif these are some great ideas... I really like the business card idea... seems like I remember hearing that one once....but I can't remember where?? Love it tho! /infopop/emoticons/icon_smile.gif

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slsharp
06-07-2000, 05:56 PM
Wheelsie and all,
The card really puts some in their place with "finesse" and brings awareness to others concerning a specific disability. For instance Blake's reads--Hi, my name is Blake and I have Autism. And then there is a brief to the point[as much as possible] information about autism and how it effects him. The wording is if it is him who is speaking to the person reading the card. It ends with telling the person that his behaviors or tantrums are a symptom of his syndrome and not due to the lack of appropriate parenting skills, or something similar to that. Then the other side of the card has 800 numbers & web addresses where they can find out more about autism. I will have to look up his file and find my copy if anyone is interested in the wording. Really, you just tell it like it is with the disorder/disability and how it effects the person so it will fit on cards you can carry with you when needed.
Tammy's card is awareness for epilepsy. Same way- as if she is telling the person and that way we don't have to worry about her getting upset when people STARE at her when she is having an episode. I just reach in my pocket hand a card and say, "No thank you, I don't need any help right now but I will ask if I do!!"
Then--- Sometimes we all pretend that everyone but us are "MANNEQUINS" and go about our shopping or activity as if we are the only humans there and we have a good day!!!
"I Love My KIDS"
Sandra

SueM in MN
06-08-2000, 07:07 PM
The business card sounds like a great idea, especially for someone with an invisible disability.PSueM in MNBRCo-Moderator of A HREF=http://wdwinfo.infopop.net/OpenTopic/page?q=Ya=frms=40009993f=38009194 TARGET=_blankdisABILITIES/ABRIMG SRC=http://disneyclipart.simplenet.com/Movies/Cinderella/Cinderella/cinderella08.gif

momngrandma
07-02-2000, 10:26 PM
I'm sitting here crying as I read this thread on staring. My ds is 24 years old and severely mentally retarded -- he functions at about an 18 month level. When he was younger, I could handle the staring, and often used those opportunities to share a little bit about Robbie and his problems -- and all his beautiful qualities -- in order to "educate". The last couple years, though, I've found it harder to smile and be nice to the "offenders". I don't say anything, but I've often given a hard stare back -- let them see what it feels like. Reading this, I am reminded, though, that staring is not always just bad manners -- that is often just trying to understand the unknown. I knew that at one time, but had forgotten. Thank you for reminding me -- I will be smiling from here on! I want people to see how truly beautiful Robbie is -- and if his mom looks happy, they'll see it far more easily! /infopop/emoticons/icon_smile.gif

momngrandma
07-02-2000, 10:29 PM
And BTW, thank you for this site and the support you all share with one another. I just found it tonight, and I can see already that this is just what I needed -- not only for our upcoming trip to WDW, but for everyday life, too.

teri
07-03-2000, 03:51 PM
Glad to have you here!
I could have used a review of this thread the first day we went to Epcot last week. I am afraid I was embarrassingly undiplomatic to a lady in the bathroom who was chiding my son for being in the wrong place... We all have our days! /infopop/emoticons/icon_rolleyes.gif

nuts4sn00py
07-07-2000, 10:42 PM
I am new to this site, but just want to say: I am so glad I found you! Depending on how I dress my son, he pretty much looks okay...I use to mostly dress him in overalls to hide his "tummy." See, he has no stomach muscles, so he gives the appearance of a tumor or sometimes a "pot" belly. We have always been very open with him (he is now 5 yrs. old) about his special tummy, & it is only in this last year where he has become self conscious of it. I believe it is mostly human nature to stare when you see something unusual & I basically treat it with alot of understanding. The child next door was amazed with PJ's tummy & use to ask him to pickup his shirt all the time. Once we showed him & explained it to him, he never asked again. Kids are inquisitive & I find if you are honest with them & explain, they absorb it & just move on. I do the same with parents, you'd be amazed how many parents will then tell me about problems that their kids have(mostly non visible medical problems). I find if you are defensive, the person staring will be defensive. I choose to educate & have never had problem, if anything, they might now look at a disabled person in a different way! Thanks for letting me share! Kathy /infopop/emoticons/icon_redface.gif

nancycels
07-10-2000, 02:12 PM
i have two daughters who are labelled mentally retarded, but to us, that's all it is, a label. It doesn't mean my youngest doesn't help teach a theater class and try out for movies and plays in our hometown,(and sometimes gets a part); it doesn't mean she doesn't work as a production assistant for tv sometimes; it doesn't mean my oldest doesn't take classes at the Restaurant School in Philadelphia, what it means is they are 'differently able' and sometimes its necessary to remind people of this. We've run into people(including some in my own family) who complain about the dollars spent on special ed instead of advanced placement classes that didn't seem more geared to boys than girls... now, I just let it role off, and hope none of her children ever have a child w/a disability.

I remember when I worked in a rehab, and the clients all called us a TAB(temporarily able bodied) because that's exactly what we were. At any moment, something in our life could change, and we could be in the same place. When I go to DIS i have to use an ECV due to a severe hit and run accident that injured my spine, but I'm just happy to be there, and frankly, anyone who wants to stare and ask questions can feel free to, because i tell them the exact same thing I tell people about my kids, they and I are 'differently able' not 'disabled'. And we all try to concentrate on what we can do well. and believe me, if they want all the gory details, i can bore them for hours!! LOL

teri
09-12-2000, 09:17 PM
bumping again, since the topic came up again...

SueM in MN
09-18-2000, 04:30 AM
unfortunatly, because of softwear glitches, we lost the good posts that some people made here recently.

SueM in MN
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mhopset
11-03-2000, 06:07 AM
I've been reading some of the hints to deal with people staring. I'm 36 have a wonderful wife and a great 4 year old son. Going to WDW 12-17-00. CANT WAIT!!!! I have Muscular Dystrophy and it is impossibel for me to walk in the parks so I will be taking my ECV.

I haven't found to many people to be rude, but I do receive a lot of stares. People just can't seem to understand why this 6'7" 290# man is in this scooter. Like everybody has said a smile does wonders. I have heard people say "That Guy is lucky he can ride around". I have to admit folks I do get a little upset when I hear that, and have been known to make a comment right back at them. I usually ask them "Do you want to trade?"

Several things I try to keep in mind:
1) I have a wife who Loves me.
2) I have a son who thinks I hung the moon.
3) Thank God, It could be worse.
4) (kinda stupid), I have a job just like you so
I can go anywhere I want, so shut up or I
will run your butt over with my scooter.
5) refer to #1 & 2

Hope this helps guys.

SueOKW
11-03-2000, 07:55 AM
Great attitude Mh... sometimes we all need a little list to remind us of the good things we have!!
Sue

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SueM in MN
11-03-2000, 11:50 AM
I like it when posts that have been asleep for a while pop back up again. Thanks for sharing your feelings.
Someone sent me a poem about smiles that seems to fit well here.
A Smile For You
Smiling is infectious; you catch it like the flu.
When someone smiled at me today, I started smiling too.
I passed around the corner and someone saw my grin.
When he smile I realized, I'd passed it on to him.
I thought about that smile, then I realized its worth,
A single smile, just like mine, could travel round the earth.
So, if you feel a smile begin, don't leave it undetected.
Let's start an epidemic quick and get the world infected!
Keep this smile going by passing it on to a friend.
Everyone needs a smile!!

SueM in MN
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SueOKW
11-03-2000, 01:38 PM
Thanks SueM - you just gave me one!!! /infopop/emoticons/icon_biggrin.gif

Sue

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lisapooh
11-25-2000, 06:35 PM
Mostly I just smile and answer any questions. I did have a person tell me once that I had no right to be at Disney since handicapped people all are supported by the government. Boy did I set her right.
I have a job, the government gives me nothing and I pay my taxes just like everyone else and I will vacation where I darn well please and if she didn't like it she was free to leave because I was not. Hate these people who assume because you use a cane and a wheelchair you don't work.
At school the kids are very helpful. I sub various classes and very few give me trouble. One of my deaf kids always helps carry my bag to my classroom. The other teachers always pick up my kids from the PE court in the am. Usually the teacher next door. Or the PE teacher walks them to me. A few parents ask about the cane and I explain and they are ok with it, Btw we have 5 handicapped teachers so I'm not that unusual at my school.

Pooh

momejay
11-27-2000, 07:00 AM
It's hard to smile when a rude person is telling you that you have no right to be in their way with an autistic child. I took my 3 children to see Santa arrive at our local mall this weekend.
My two six year old DDs, my autistic 4 year old DS, & myself found a spot right up front. We were there an hour early. Just before show time more & more people started to gather around us. My son & I were asked to leave. (I refused) Some rude people, who arrived at the last minute complained that his stroller took up too much space & I should hold him in the back. (He was cranky about being crowded but once the show started he was fine.) Doesn't he have just as much right to be there with his sisters? I had to explain to security that I was there first, that my DS was autistic, & that I had other children there. The stroller that he was in costs over a thousand dollars, yet people were trying to lean on it, cram it into my girls. I try to do as much "normal" things as I can for my kids, but some people make it so difficult. The security guard never said a word to this lady when I later complained about her harassing me throughout the rest of the show. (name calling, bumping into me, pinching my son) Lady, if you are out there you aren't much of a lady. You should be ashamed of what you are teaching your children.

SueM in MN
11-27-2000, 12:50 PM
I've very sad to hear about what happened to you and especially sad that none of the other people spoke up for you. But, sadly, many people are out for themselves and don't really care about getting a good experience for anyone else's kids. While they might be giving their children a magical experience, they are also giving them the OK to step on other people to get what they want.
PS, if she was piinching your son, that's assault.

SueM in MN
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lisapooh
11-27-2000, 03:42 PM
Good thing I wasn't there because my chair would have accidently run over her toes. Your son has every bit as much right to see Santa arrive as any other child. I assume he was in a MacClaren stroller. Of course he was antsy until the show started, I bet a lot of the "normal" kids were too.
Sorry this happened. If he is in a pre-K program maybe he will go to see Santa again with his class. In fact I think all the autistic classes are goingon a special trip to the mall to visit Santa. And the deaf kids are going to Signing Santa.
Santa will also visit all the ESE classes near Christmas and bring gifts.

Pooh

nae
11-28-2000, 05:32 AM
Just wanted to add our latest experience. We went to louisville kentucky to pick up our new minature schnauzer "ziggy" and we stopped at chili's restraunt for lunch. There was a family across from us all dressed up from church and they were staring at us i decided to ignore them.Then their daughter about 4 yrs old came over to kelsey in her wheel chair and wanted to be friends.This was so sweet she even gave kelsey a kiss on the cheek.It's this kind of staring that made our day! :D

disney chatterbug, email me anytime

teri
01-14-2001, 08:59 PM
bump, for new people who are just joining us and have questions about how to respond to people...

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chris1gill
01-15-2001, 07:41 AM
I guess I'm REALLY terrible about staring... I think I get more stares because my 3 year old is usually riding on my lap.... I overheard 1 very small child asking if I was the Mommy... That only happened once, so I'm okay with it so far...

I'm also very bad, I never make eye contact, or very very rarely... it helps, I don't know if people are staring, and I don't much care.... It's that Boston driving mentality, if I don't see you, you're not there... it works for me!! This probably sounds negative, but believe me when I say it's not, I'm always smiling, playing with my own kids (especially the 3 year old on my lap), and pretty much enjoying myself!!

I also agree, it could be so much worse, and I'm just thankful that it's not!!! I love my husband, and I love my kids, and they help me get through each and every day... I wish I was more outgoing, but I've never been too outgoing to begin with, I don't even really know how to BE outgoing outside the house!!

Most of the questions that have been directed towards me have always been inquisitive, not hurtful at all.... People are genuinely concerned, and when they ask, I have no problems answering their questions... I just have problems initiating the conversation LOL....

teri
02-18-2001, 03:36 PM
just a bump for our new friends who are planning trips

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Disneygal
02-23-2001, 05:56 AM
I might be crazy, but I refuse to pay any attention to people that stare at me. Maybe when I was younger it might have bothered me, but now they are of no concern to me. My main objective is to make sure my family is happy and having fun, not worrying about insensitive people who are oblivious to reality. My time and energy are very precious to me, and my family and I will use it for our enjoyment, not trying to make others who stare feel better! :D

SueOKW
02-23-2001, 10:43 AM
I've been noticing this more lately - from the other side. 3 times now I've seen people who are leading a life similar to mine, and I really wanted to smile at them, and maybe say hello - how are you - that kind of a thing.

So - anyway, it kind of goes back to what I said earlier. I seem to crawl into my own world when the family is out and about.. and make little or no eye contact with anyone. And I think my new goal is to look around a bit more. I might get some nasty looks, but I might make a new friend, or hear a cheery remark. This is my new goal for our March trip! I'm acting like this is a real risk - and I guess it is. But I so wanted to talk to those other people - I just wonder how many people would like to talk to us, and can't cuz I don't acknowledge them??
Sue

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BuckeyeBelle
02-23-2001, 07:07 PM
Thanks for bumping this post to the top again. I've been feeling a little down about things lately and it's so helpful to hear everybody's advice and experiences.

My little boy (6) has a genetic condition which is becoming more obvious as he grows. Although he is still very small for his age, he has unique facial features and is getting bigger and bigger in his stroller. More and more, people have been looking him over trying to figure out what is "wrong" with him. I knew the day would come when he wouldn't pass as just another baby, but I'm not sure how to handle other people's curiosity about him. :(

My instinct is to smile constantly and shower him with love in public. We don't pay too much attention to the other people around us. Is that the easy way out? I don't want to be rude, but it seems that when I make eye contact, people start asking questions about him. Most people are very nice and say how cute he is, etc. But the next question is always "how old is he?" and when I say "six," they don't know what to say, and neither do I, and then there is this long, awkward silence. I know the explanation is a lot longer and more involved than most people want to hear. And I don't always feel like explaining it either. Elevator conversations are the worst because we are captive! Anyone else have that problem? Any suggestions for a nice, short reply that will make those situations more comfortable for everybody involved?

Just want to add that this board is the best. Even though I don't post here very often, reading what you all write helps me so much. Thanks everybody!!!! :

SueOKW
02-24-2001, 04:31 AM
I think you hit the nail right on the head. Like you, there came a time when my DS could no longer pass for just being "sleepy". That's when we drew in too. Short smiles and avoid eye contact at all costs.

It is NOT taking the easy way out. It IS an excellent coping strategy. It's a good way to enjoy yourself without having to answer personal questions, or open yourselves up to rude looks.
Your Ohio pal - go Redskins!
Sue

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DJBounce
02-24-2001, 08:56 PM
We were at WDW a little over 2 weeks ago with our 5 yo DD with CP. We did not have a wheelchair (state funding...aaiieghh don't get me started) but we used a jogger stroller for her. It was a little bigger and we did get some curious looks as we were getting on crowded buses, but no stares that I can remember. I remember this thread from a while back because my wife felt that I wouldn't handle stares in a constructive manner. I know that if I was to receive stares while holding my daughter as see is thrusting her tongue out and droobling, I wouldn't be very polite back.....I know , not a very good way of dealing with the situational ignorance of the starer. Thankfully though, no stares that I could even register, not that I was looking, I was too dang busy trying to keep up with my wife who turned into a world class sprinter for our WDW vacation. HA HA HA.

DrewJ
The measure of a true hero is not the size of their strength, but the strength of their hearts.

mommanne
02-25-2001, 07:23 AM
I have two children with AHHD and ODD, which I guess doesn't qualify as a disability, but it does disable our outings. ;)

My kids are 6 and 9, and they often stare at disabled people and ask questions of me. I am so afraid that their simple, honest questions will hurt the people they are talking about. I can be straightforward about wheelchairs (that person can't walk) but I don't know how to explain mentally impaired people in an informative way, without sounding mean (for lack of a better word).

What is a kind, compassionate, honest way to explain people that are retarded, or just different? I am uncomfortable saying "don't stare" as if those people don't exist, or shushing the kids. That dismisses the people as if THEY don't exist.

Please don't take this post offensively if I have not put it correctly. None of us in this world are perfect, but we are all God's creatures.

[This message was edited by mommanne on 02-25-01 at 11:34 AM.]

[This message was edited by mommanne on 02-25-01 at 11:34 AM.]

BuckeyeBelle
02-25-2001, 07:46 AM
Hi Drew,
We use a jogging stroller for our DS too. When we took him to WDW in 2000, we asked the bus drivers if we could load it thru the back door since it was too big to go down the aisle folded up. On the days DS & I went to the parks by ourselves, I don't know how I'd have gotten him & all his stuff on the bus otherwise. 99.9% of the other bus riders were fantastic about it, and lots of times someone even offered to help me. :cool:

Only one driver wouldn't open the back for us - he was having a bad day I guess! My DH had to carry the stroller over his head to the back of the bus - it was a sight - lol! Well, there was this lady sitting directly across from DS & I in the front, and she kept going on and on loudly about how stupid it was to bring strollers on the bus, how they just get in everyone's way, how it couldn't possibly be better to bring a stroller when you can rent one in the park, yadda yadda. She was making fun of my husband (and also a father of *two* sets of twins who had brought a double.) I wanted so badly to tell her that the man she was mocking was the father of this darling five-year old who cannot walk!!!! But I just sat there and let my cheeks burn. I'm just a wimp I guess - lol! Anyway, thanks for letting me vent a little. :-)

I have to say that this particular experience was far and away the exception. I'm so glad you did not have to go through any of that! Even with the few bad apples, WDW is the greatest place to go for vacation. :cool:

[This message was edited by BuckeyeBelle on 02-25-01 at 11:52 AM.]

SueM in MN
02-25-2001, 03:35 PM
Mommanne, I hope you feel welcome here. Anyone who has special challenges to deal with can relate. There was a post (many pages back now) that dealt with explaining disabilities to children. I'm not sure I can find it (search doesn't work well for me), but I'll see if I can hunt it up. That would probably help you out.

SueM in MN
Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)

mommanne
02-25-2001, 04:41 PM
I do feel comfortable here. While the challenges my kids face aren't visible, they do exist. And as far as people staring, I can relate, because my kids have meltdowns that people look at in distaste sometimes, surely thinking that I am a "lax" mom giving in to tantrums. Whatever......

The problems that my kids have aren't visible. I'm sure that we get stared at often, but to be honest, I'm too busy dealing with the behaviors of my kids to deal with the looks of strangers because I am usually too busy dealing with the situation. However, we've had some "interesting" interactions with the public at large. ;)

And I'm sure my kids get written off by others as "brats". I've learned not to care what people think, and my kids are too busy acting out to notice. However, if my child ever heard an unkind reference to their appearance or behavior by an onlooker, I'd be really angry.

That's the reason for my question, and thanks for your reference to the thread, I'll look for it. Many times I get understanding glances from strangers, and I am grateful for them. How can I facilitate the interaction between my kids and other special people a kind, constructive, manner?

I had a bad experience once, when I saw a blind person having a problem entering a subway car. I offered help, and she chewed my ear off! Therefore, I am worried about being the empathetic onlooker, and how that would be perceived by the handicapped, and their loved ones. It's not pity, it's empathy.

Thanks for listening.

JorJor
02-25-2001, 05:01 PM
In my case, my ds was anywhere from a newborn, all the way until he was 13 months old...We fed him through a "G" tube that went directly into his stomach.He had to be fed every 4 hours no matter where we were, or what we were doing at the time. People always stared. Because we had to pull up his shirt and there was a long tube with a fat syringe at the end, that had his formula or "food" in it. The syringe would go empty, and we'd pour more in it...so naturally people were either curious or shocked. But most of them, just smiled and me, and I smiled back. It was neat, though, when at a birthday party or gathering, people that had never seen my son fed, would ask if they could watch while I fed him. Absolutely! It WAS amazing to see, and that's how we all gain knowledge and grow. So if people are staring at you...no matter what your disability, just throw them a smile, and they'll either smile back, or look away. :)

alasknmom
02-26-2001, 01:05 PM
I've often said, Id rather you come up, as uncomfortable as it is and say hi to me, ask questions. Nothing is too personal or will hurt my feelings.
But if you stand there and start or whisper and point, THAT hurts my feelings.

We went to a boy scout function friday night for my son and so many kids started and pointed and giggled and whispered.
I had such hurt feelings b/c a lot of these kids KNOW me and have for years. So WHY they felt the need to point and stare and giggle and whisper is beyond me.
Funny thing is maybe I dont notice it normally because NO less then 10 kids did this on this day and to start my day out (on that day) a lady at work gave me a discusted look TWICE (2 different times of the day).

I feel like wearing a bumper sticker that says "don't stare, come on up and talk to me, I dont bite!"

Rachel in Alaska<

Michelle NY
02-27-2001, 04:26 AM
I have to say that this is an amazing thread!!! I know that I posted to it a while back but BuckeyeBelle really summed up some of my feelings. My DD has a rare genetic disorder,when she was a baby I could always "hide" her disability with a stroller. Know that she is 3 , and a very tall thin 3, it has gotten more noticable. It use to really upset me how many time I would here"Oh she looks so tired" I always said yes now I say oh it's just her! People always look very puzzled by that answer. If they seem nice I will give them a little more info. Most times it is amzing how wonderful and kind people actually really are if we give them a chance.
:)

teri
03-04-2001, 02:31 PM
bump

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"My brain takes a vacation just to give my heart more room..."
teri@iluvdisney.com

faeflora
03-11-2001, 06:41 AM
Hi,
Wow this is a great thread!
This is something I and my DH deal with on a regular basis. I have a rare genetic disease called Ehlers-Danlos Syndrome Hypermobility Type. I was born with it but not diagnosed until my 30th birthday and what a birthday gift it was.
I use a wheelchair in public and c-crutches in the house. I can also walk extremely short distances without aids. I work as a stage manager, dancer and at a dance store so I always get questions from children regarding the chair.All of these jobs require me to on occasion stand up and move without the wheelchair. This always causes great commotions and then come the questions. I spend a great deal of my time, smiling and giving a full medical report on what is Ehlers Danlos Syndrome. I really love the questions from the children because they are just so curious. Because I am also an advocate from arts and accessibility and have done alot of talks and performances in our area my dh and I are now never sure if they are staring because they recognize us or if they are just doing the regular hey it a wheelchair stare. Either way we just smile and move on.
Jules

SueM in MN
03-11-2001, 11:39 AM
I think it's really neat for kids without disabilities to see that people with disabilities can do things like dance. My dd has been in a wheelchair dance class for 3 years. Her teacher is a neat lady that feels "art is for everyone" and she has been teaching people with disabilities for as long as she has been teaching dance.g

SueM in MN
Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)

faeflora
03-11-2001, 02:39 PM
Hi Sue,
Thas is wonderful that your daughter is in dance class, we are so hoping that in a year there will be an intergrated dance class for children. The arts are such a wonderful place for all to explore and be challenged.
Jules :)

SueM in MN
03-12-2001, 05:24 AM
faeflora, if you would like more info about my dd's dance class, feel free to email me. Her teacher has done instruction for other dance teachers, Physical Education teachers and OT and PT. She's also sent out instructional video tapes. Uniquely Abled Dance Center is a non-profit organization and services are free of charge..

SueM in MN
Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)

Spinning
03-12-2001, 02:18 PM
Hi this is a very interesting thread. I posted a question several days ago about how to explain disabilities to my children. My DD is a very nurtuting child and sensitive to others. My Dh and I try very hard to help her understand everyone is made different and to be kind and nice. I worked for many years with special needs kids and adults also in a deaf blind center. I took her with me as much as possible. Also where I worked had a special needs day care which was intergrated! It was the most wonderful place. Unfortunatly it closed. So Rachel is use to seeing people with disabilites. But I still find it hard when she asks questions. I feel you need to answer right away, not hush them up or act like you didn't hear. that makes me feel like the disability is a "bad" thing. Instead of just another way of like. I truly feel if we start with kids then eventually everyone will be accepted. And people won't feel the need to stare or make fun.

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teri
03-22-2001, 10:39 AM
:)

AUNTIE_BEEZ
03-25-2001, 07:49 AM
I know many of you will be traveling to WDW with children/teens. Mine is just the opposite. Included in our party will be my elderly mother who wishes she still had the abilities of 50 years ago.
She is now confined to a wheelchair from Rheum Arthritis, has a trach (which she is able to keep plugged 98% of the time) and is unable to cut her food up for herself due to Arthritic hands.

Often, we find that children will come right out and ask questions and I am very open with explaining things to them. Most of the rudeness comes from adults. Most servers in restaurants ignore her as if she has a learning disability and often want to seat us to the back of the restaurant. I am very proactive with the ADA; I am also a nurse which I feel gives the right to stand up for people with disabilities.

Often times I explain to the host that we do not require the back of the restaurant. I have also had to explain to them that she is able to do her own ordering. Fortunately - after the initial conversation with my mother they are able to overlook the disability and see her for the person she is.

This will be the first time we will travel to WDW since she was trached 2 years ago but chose to return due to the extremely wonderful treatment/service we have received since she has been wheelchair confined.

I truly hope that all of you traveling to WDW find the same superior treatment that we have received in the past.

IF ONLY THE REST OF THE WORLD COULD BE LIKE WDW..............

teri
03-25-2001, 08:23 AM
:) Thanks for sharing your story with us, Auntie-Beez!

http://www.wdwinfo.com/sites/family/galc.gif DIS disABILITIES Discussion Board FAQ under construction! (http://www.wdwinfo.com/sites/teri4/DISindex.html)
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binny
03-28-2001, 11:14 AM
This is a wonderful thread!

[This message was edited by binny on 03-28-01 at 03:33 PM.]

*Robin*
05-28-2001, 11:23 PM
Hi everyone, I am so thankful I found this board! I have a dear friend that has 2 disabled children, and I have always considered her a hero...now I have found a whole group of heros...I wish I could hug you all!

BuckeyeBelle, when someone asks about the age of your litlle boy, how about "6 adorable years, and I've cherished every moment of it" and leave it at that...? They don't need to know the details, and it just puts a finality to the whole thing. Who cares what they think from there, they know you adore your child!
:)

Have a great night all! :D

SueM in MN
05-29-2001, 07:13 PM
Thank you for your nice post, Robin. If we had a world full of people with attitudes like yours, people with disabilities would have a much easier time.

olena
05-30-2001, 03:18 AM
Wow! There are some great stories and ideas on this thread. Much appreciated by this little lady....:)

I never thought about strategies for stares. Usually, I react and it depends on my mood. If I'm feeling chipper, I give 'em the grin or just make direct eye contact, as best I can. That helps.
I'm legally blind, so I don't see that many stares. It's the comments that hit my ears. Staring is bad enough, but making snide comments is going over the line. They're just asking for it.

That's where I got most of my practice in the 'reacting' department. I've got the 'kill 'em with condescending kindness' bit down pat. Oh well. That's if I'm not so chipper....:)
Being legally blind is very obvious when reading menus or looking at tags in stores. I get followed by sales folks for that reason, though I'm far from the thieving kind. When they get too close or too annoying, I get back at them by having them escort me all around the store and read everything to me. *laughs* They HATE that!

I can usually handle questions, especially if they're worded nicely. The tough thing for me is all the tangents and other questions my answers lead to. I have spent ten minutes in a shoe store with a lady who kept asking, "Well then what about this?" and "What about that?" That can get tedious. Everyone's first question is always, "What about glasses?" or "How can you see?" On glasses, I just say, "I would if they helped." Now answering the other? I used to get flustered. How do you answer that? Then a good response finally dawned on me. I just laugh and say, "With my eyes." Then they laugh and remark about it being a silly question.

I work with an organization for folks with macular degeneration, and I've made some good friends who share their experiences. I guess I deal with things best by having a sense of humor. I make fun of myself better than anybody I know. My brother and aunt have the same conidtion and we joke a fair bit. My favorite greeting for folks is 'Nice to see you....almost.'

Thanks again for this thread. I have truly enjoyed it. :pinkbounc

BuckeyeBelle
05-30-2001, 12:25 PM
Thank you Robin for the wonderful response! It fits my son to a "T" -- he adores life, and I adore him! I will keep that in mind! :cool:

Buzzlver
06-02-2001, 02:15 PM
I am constanly amazed by humanities varying degrees of compassion. I have only felt hostile one and only one time at WDW. A few years ago we were waiting at a DI bus stop for a MK bus. We struck up a conversation with a coupke whose children were roughly the same ages of our children. One of their kids, the 4 year old was in his "doom buggy" as he called it. When the bus approached, empty of all passengers with only 7 or 8 of us waiting for the bus, a family of 5 rushed to get on board. I was thinking to myself that the excitement was just to much for the kids so thats why they were scrambling for bus. Anyway... when the bus driver seen the child in his doom buggy, he got out and with a very compassionate and nonchalant way escorted the child on board. OK.. 3 minutes tops, right? no biggie?? The family of 5 was absolutely beside themselves, complaining and gripping all the way out of the DI. My DH is one of the kindest souls every to be touched by pixie dust calmy asked the father if they had PS seatings they were late for. The father of 5 said "NO, but you would think they would have special buses for those people". Both of our mouths hit the floor and I had to send my DH "the look" for fear that he and the "father" of 5 would go to blows on the bus. Thankfully, only one other couple heard the comment and the sweet family from Ohio was spared from the comment. I have to say it would have left a bad taste in my mouth for people that day except for... the looks on the faces of my children and the Ohio's family children when they finally seen the castle. The two boys hand in hand (I think its great that its still ok to do that at 4 :) staring up at Cindy's house. We made some great friends that day! But we also learned that as far as humanity has come, it still has a long way to go.

hilside
06-15-2001, 09:26 PM
I am very small and use a motorized wheelchair, so believe me, do I get stares! :) As others have stated, it is not usually the stares that bother me, but the comments. My favorite was when I was sitting in a mall food court talking on my cellphone, and some amazingly rude woman just walked right up and said, "How old are you?" I replied "26," (I think that's how old I was at the time), then began to finish my conversation. Then she interruped again, this time with, "How many inches?" Not "How tall are you?" but "How many inches? I just stared at her, and said, "Um, I'm on the phone." I really wanted to say something raunchy.. hehe but I controlled myself. :p

6_Time_Momma
06-15-2001, 10:28 PM
I think the staring problem witll get worse as Garrett gets older. People think kids are cute when their young, vut when they get older, not so cute. I find myself staring a lot, too though. Mainly when I see a young man with DS working bagging groceries or wiping tables at a restaurant. I guess I am trying to see what Garrett's future could be like. Usually, my DH then catches me and chides me for staring. If a child is staring, I will usually look at Garrett and say, "Can you say hi?" and that may get the child to ask the question I know he is dying to ask. Adults, I just smile at or I ask Garrett to tell them hi as well.

SueM in MN
06-16-2001, 07:41 AM
We have experienced the situation that Buzzlvr described with our DD. She was waiting in her wheelchair to board the bus with my DH. My other DD and I were waiting at the front of the bus to board. We heard a similar comment about "You would think they would have special buses for those people" (spoken with a sneer). We didn't do anything, but stare at them 9along with several other people who heard. We also had the situation where someone complained to the bus driver and riders in general at park closing that "those people shouldn't be riding the bus. She takes up 2 spaces where people could be sitting." Never mind that my DH, other DD and I were all standing, even though other DD and I had gotten on the bus, waiting in line with everyone else in enough time to get seats. The bus driver made some comment that I didn't hear and people glared at those who made the comment.
It sad that some people seem to think It's all about me! and they don't consider other people have needs and wants too.

BuckeyeBelle
06-16-2001, 08:49 AM
You just have to roll your eyes at comments like that (in the bus line), don't you? You know those people would be the first ones to complain if a special bus rolled up and loaded only your family... they would whine about you getting special treatment while they had to ride the cattle car bus. :rolleyes: Good thing those people are fewer than 0.1% of guests at WDW. The other 99.9% seem to be very understanding. Guess we need a few bad apples to remind us how nice most people are.

Andrew Bichard
06-20-2001, 08:45 AM
Often, when I see someone in a wheelchair I find myself taking a good look.

Why?

Because I am in a wheelchair myself and I want a good look at their chair, especially if it is better than mine. <g>. Just the same way that car enthusiasts tak a good look at a new model when they see one.

Andrew

lisapooh
06-20-2001, 10:37 AM
Same here. I look at the chair first then the person. Want to see the models.

teri
08-08-2001, 12:08 PM
bump, for new people :)

teri
10-15-2001, 11:26 AM
bump again for new people :)

Leah's Mom
10-15-2001, 06:00 PM
My DD is 10 and has autism, she looks fairly "typical" until you watch some of her "stims" If i think people are staring at her behaviors I often start to do sign language! I know VERY basic sign, but once i start to sign to Leah it seems to give THEM a visual clue!! Works like a charm!!

teri
02-06-2002, 05:26 PM
bump, for our new people :)

Alaska
02-07-2002, 12:03 AM
We have found that for every rude person there are at least 10 great ones.

As I have posted before, my son can't sit up on his own, uses a wheelchair, has a tracheostomy and g-tube, uses a ventilator part-time, and cannot speak because of significant upper airway collapse (the reason for the trach). But he is bright-eyed, kind, and engaging.

He is now in a combination first-second grade class with all of the kids who were in his kindergarten class and 24 additional children. One of the mothers of twin girls who were in his kindergarten class told me, with tears in her eyes, that during her girls' Brownie troop meeting the troop leader was talking about differences in people. She asked the girls if anyone knew someone who was different because s/he had a disability, for example, someone who uses a wheelchair. Although 6 of the little girls in the troop are in my son's class, none of them raised their hands. The mom who was telling me the story said that she thinks the kids just see all of the medical stuff as part of my son and do not see them as evidence of "disabilities."

Now in the rude category, a mom came up to me during a class function and out of the blue said "so his condition is progressive, huh?" I sort of stammered that it is not considered to be progressive, but that folks with his disorder do not build muscle at the same rate that their bodies grow, so it might seem that way. What I really wanted to say was "no, and by the way, are those really a size one bizillion pair of underpants you are wearing?" just to let her know what it feels like to have someone say something completely inappropriate. However, that would not have been nice and she is someone who carries herself like she is a queen bee, so I just figured that she was insecure and socially out of it and smiled after I answered her question and changed the subject to something positive about the class gathering.

SueM in MN
02-07-2002, 07:10 PM
Alaska, I had to laugh at the remark you wanted to make. We do need to bite our tongues sometimes, don't we?
Sometimes, I feel like a mother grizzly bear defending her young. It would be nice sometimes just to growl at someone.

s&k'smom
02-08-2002, 11:27 AM
I haven't had a chance to read all the posts but I heard this one this morning. Chatting with a fellow parent who son is also autistic. They were at a grocery store one day and his DS was acting up. A very rude woman said to him "can't you control your son". He turned to her and said, "he has a social integration problem and so don't you". We just cracked up because we've both been there. Great thread!!

Mskanga
02-16-2002, 10:26 PM
All I can say is I admire you guys for all the courage you show, but I can't help it when a couple of times I have "heard" the comments from people complaining about disabled people and how long it takes to get them on the bus and off, I always answer the same thing , be thankful that you are not in a wheelchair or have any disability and pray that you never do. That usually shuts them up, it really makes me mad how some people can say things like that.
Thank God, nobody in my family is disabled but I also think that disabled people are very special in their own way and believe me....they have given me a few lessons in life!

teri
04-22-2002, 03:33 PM
bump!

HockeyDadof2
04-24-2002, 08:41 AM
On our trip to Orlando in 2000 my then 4 y/o son got very sick on our way to the airport, throwing up and looking very weak. When we got to the airport the skycap suggested we take a wheelchair for him which we did. I was amazed at the number of people that stared at us. I understood the kids stares, but was really kinda perplexed by the adults who stared. I have a question though. As a parent that has always tried to teach my kids that staring is rude and they shouldn't do it, is it more offensive to have my kid stare and wonder about a child in a wheelchair or with an obvious difference, or is it more rude for me to scurry them away. My fear is that I am giving the impression that I am trying to get away from that different kid (or adult).

HockeyDadof2
04-24-2002, 08:45 AM
It is sickening that someone would actually begrudge someone in a wheelchair because they load first or because it takes an extra minute to do something. I can't say that I personally have ever heard anyone make such a comment but if I did I would surely have to say something.

s&k'smom
04-24-2002, 10:26 AM
Because of my son's diagnosis he is able to ride a smaller van to school. But I have to tell you I am much more patient now when I get behind a school bus. Before I used to be "ugh behind a bus" but did my tune change when my own child is now riding transportation. A few times at WDW I've been on a bus when someone needed to use the lift and it only takes a few moments. I guess I just don't understand why we can't all be a bit more tolerant.

HockeyDadof2
04-24-2002, 03:27 PM
Particularly at the happiest place on earth!

s&k'smom
04-25-2002, 08:05 AM
Amen to that!

travelitis
06-23-2002, 11:49 PM
I just read the entire thread and have laughed and cried. "How many inches" and the "Social integration problem" were great!

I want to respond to the poster asking what to say to her kids about mental disabilities. Granted, that's probably back on page 3, but better late...

I don't know if what I do will get a thumbs up or not, but our neighbor's son is autisitic. I told my kids that his brain works differently than theirs. Some people walk differently or talk differently, and his brain just thinks differently. I'm glad they've had the opportunity to interact with him, and they are unphased by his differences.

Sunglasses help me ignore the stares. Once I wrapped my ankle like it was injured to give people a physical
reason so I wouldn't field the comments and stares. It did work.

alohacousin
06-24-2002, 01:10 PM
I have enjoyed reading these posts. I have had many experiences with rudeness at disney. The adults I usually have a good comeback but when the kids say something inappropriate such as "your daughter chews on toys like my dog" or Is she like human?" My mouth drops. I know they are not being mean...but on the other hand I wish the parent of the child would correct them. When a friend took her daughter to wdw she had a good comeback. When they were able to get inline through the exit, an angry father said how do I get that special treatment? Her reply was be willing to change your childs diaper for the rest of your life...then there was silence. I just don't think people think.:rolleyes:
3 more days till our disney trip!:Pinkbounc

s&k'smom
06-25-2002, 07:59 AM
What a brilliant comeback. I work at a human service agency so believe me I know what that's like and what families go through.

Talking Hands
06-25-2002, 10:33 AM
I frequently get comments from people that they would sure like to have a power wheelchair like mine to get around Disney. I usually just tell them, "no, you don't" Sure it might be nice for a day but my dream is to be able to walk around in the parks like anyone else and leave the wheelchair behind. I don't like the problems that come with the need for the chair.

olena
07-06-2002, 12:18 AM
We just got back from our trip in May. My parents went along and my Mom had to rent a wheelchair. She has degenerative bone disease, among other things, and she couldn't handle so much walking. I saw no one staring, but I'm a little too blind to tell. No one made any comments. Maybe it was because my 300 pound body-building brother was the one pushing her.....:)

SueM in MN
07-06-2002, 10:21 AM
You made me smile, olena.:)

Glad to hear that you had a good time.

Wheelsie
07-06-2002, 10:26 PM
I'm w/ Lisa, I'd rather walk the parks w/ DH than use this contraption (of which yes I'm thankful that was invented since walking is not an option) But you understand my frustration I'm sure :)

Tense
07-06-2002, 11:11 PM
I have often wondered whether people are rude because what they see instills some sort of fear in them. Or perhaps they aren't being rude, just ignorant or misinformed. My brother was born severely autisic, profoundly retarded,scizophrenic, and non verbal, the later means no talking, but could yell and scream. He looked perfectly normal... yes.. no signs of any retardation on his face. Obviously he wasn't like everyone else, but he did LOOK like everyone else. We would get such stares, because of his mannerisms(ie rocking, or any other repeative motion, but his behavior as well). My parents believed because he was 'special' he should NOT be cooped up all the time in the house, and made it a point of taking him with us everywhere. There are many funny stories as I look back.. but quite honestly he would really be hard for people not.. NOT to stare. Imagine this.. My brother 16 years old.. in Sears.. walking past the bathroom displays... UNAWARE to him.. that they are DISPLAYS... decide he needs to USE the bathroom... yes.. you all can guess the rest.. In the middle of bed and bath.. pants down, and on the toilet! WHO wouldn't stare!AND if you know anything about Autism... just try and make him stop what he's doing! ha ha! So.. I truely understood people when they stared, gawked or were really upset. We did Alot of explaining! Most of the time people were afraid of him.. because he LOOKED normal but was not behavior that way.

teri
07-07-2002, 12:13 AM
Oh, Tense, do I know what you mean-- just try to stop them. You are describing my life with my son... he did the same thing once, in the home improvement section of a hardware store.

When they look normal but their behavior is different, people just freeze.

s&k'smom
07-08-2002, 08:12 AM
Oh you guys. I know about the "looks". I know in the past people thought my son was just being a brat but many times he was just reacting to his sensory integration issues. He really could'nt help himself. "If only they could walk a mile in my shoes"!

alohacousin
07-08-2002, 09:06 AM
I just wanted to share with you all about a little girls wheel chair we saw at the Grand Floridian. On the back was a sign that said "starring is rude" My daughter came up to me and said mom you have to read this...people who stare really bugs her. She says Mom why do people walk past kelsey turn their heads all the way around and stare. My reply because she's purdy;)

adisneyfan2
07-10-2002, 10:41 PM
Just returned from our umpteenth trip to WDW, but only 2nd trip after discovering SAP. Our almost 5-y.o. son is high-functioning autistic with many sensory processing issues. We can definitely relate to the stories of unsolicited advice on child-rearing and discipline. If only they knew! :rolleyes: Our first several trips to WDW involved hours of riding the monorail around and around to decompress from a long line (like Dumbo) -- more often than not without actually ever getting to go on the ride because he couldn't hold out long enough! :( Then we heard about the SAP. We are very concientious about not abusing it (i.e., waiting in line like everyone else when feasible), but we use it freely when it is needed. The good news is that it has made WDW a great place that my family can enjoy like everyone else. :) The bad news is the "looks" & comments about using the wheelchair access lines (or exits) because my son's disabilities are not visible. Unfortunately, I have very limited tolerance for this type of thing, and hope to remember lots of the great advice above in the future. (I really liked the sign language idea!) When someone was especially bold on our last trip (over the 4th of July) I turned to her and reminded her that not every disability is visible. Then I said that for 364 days out of the year, HER kid was priveleged, but on this one day, thanks to Disney, MY kid was the lucky one. I don't think it changed her mind a bit, but it sure made me feel better!:cool:

s&k'smom
07-11-2002, 10:00 AM
Hey adisneyfan2, great response to that rude person. I'll remember that.

HALLOWEENTOWN
08-10-2002, 12:37 AM
I have two children with AHHD and ODD, which I guess doesn't qualify as a disability, but it does disable our outings.

These are disabilities.

hilside
08-10-2002, 04:55 PM
A disability doesn't have to be visible to qualify as a disability. All it has to do is interfere with one or more major life functions to be a disability.. I would definitely say those qualify! :)

Hil
(former special education teacher)

Wheelsie
11-16-2002, 02:35 PM
Boost

Jillpie
11-19-2002, 10:56 AM
I am a new reader to this forum, but I almost feel like I should not be here. I happened upon it, but boy am I glad I did. You are all so incredible, strong and admirable. I almost don't want to say this, but I am fortunate enough to have three healthy sons. I do have a question though and I hope I word this correctly. My sons are very polite and would never say anything rude to anyone that looks different from them. I do wonder sometimes though, would you mind if we did ask what was wrong and why you or your child is in the wheelchair...or would you rather people just not say anything? I guess sometimes if we are in close quarters, say in a line at DW for example. Please forgive me if this is a stupid question, but sometimes I just wonder. Thanks.

AprilsZoo
11-19-2002, 03:16 PM
No, I do not mind at all.
I don't particularly like the phrase, "What's wrong with you (or him/her)?" as I think it implies that anything outside the "normal" is *wrong*. But asking something like "do you use your powerchair full-time, or just for distances?" can lead into further discussion that builds tolerance and acceptance in our children.

I have learned that the innocent questions that kids generally ask (even tho sometimes phrased without the tact that comes from maturity) are just that -- innocent. It is the reactions of the adults with them that are sometimes innapropriate. Like for example the child who is saying "look mom, look" while pointing right at me, is usually more curious about my powerchair than the fact that *I* am in it. So instead of scolding the child for pointing, it would be better to say, "oh that lady must have legs that aren't as strong as ours, so she uses that special chair to move around instead of walking like we do." Similar responses can be made for all sorts of "different" situations. ;)

April
(edited for poor grammar ... oops)

JudithM
11-19-2002, 04:51 PM
Jillpie, I would be glad to explain to a child or even an adult why I use a ECV/scooter at WDW. On one trip a young girl was ahead of us when we walked into the Studios. I rented a Disney ECV & happened to see the same family a little while later. The young girl looked at me with a look I knew she was wondering. I briefly explained that my knees are not as healthy as her knees & that by using this ECV/scooter, I save on my knees.

Jillpie
11-19-2002, 07:30 PM
Thanks so much April. I like that response to say to a child in explaining why someone is in a wheelchair. I think the most important lesson I teach my boys is patience and consideration when we see anybody that needs our help. If I teach them to take a minute to open the door or to be patient while they get loaded on to the bus, it goes a long way. Then I see them doing the same. I just wish I would see more parents taking the time to be patient, its amazing what that teaches a child. Thanks for your response and I wish you well. This is really a great supportive forum. We could all be needing it someday.

SueM in MN
11-19-2002, 08:41 PM
Thanks for your interest, Jillpie.
My DD has gotten some of the innocently stated questions from kids (sometimes even "What's wrong with her legs?") Little kids sometimes don't come with tact built in. My DD can't talk, so first I explain that she can't talk with her mouth, but add that she can understand and talks with either her hands or a computer. Then I pretty much give the same explanation as April gives. We've had the same experiences with some adults as April has too, so I usually try to respond before the adult can. The adults who respond inappropraitly are usually embarrassed and just want get out of the situation ASAP, so I try to help them get out in a positive way.

adisneyfan2
11-19-2002, 09:51 PM
Jillpie, I have to give you credit for asking a difficult and sometimes awkward question!

In our case, our DS has a mostly "invisible" disability (an autism spectrum disorder.) There are times when his behavior makes his difference painfully obvious. I cannot tell you how much I appreciate it when someone responds with a sympathetic or understanding look or comment instead of a snap judgment that I need parenting lessons, and all my DS needs is a firm hand.

Even more difficult is when his lack of typical abilities becomes obvious, triggering the "what's wrong with him?" questions. I have to agree with AprilsZoo about the choice of words, but nonetheless, I would rather have the opportunity to help someone (especially other children!) understand that not all disabilities are visible (rather than tolerate yet another smug look of disapproval by some "know-it-all"!)

Whether visible or not, people with disabilities deserve to be understood and appreciated for what they are rather than misunderstood or judged for what they are not. Teaching children to ask (hopefully politely) so that they can understand is a crucial step in helping everyone achieve the respect we all deserve. Good for you for helping your children get there!

tnk4god
08-04-2003, 11:37 AM
Great topic, Some background: I am a disabled Vet, While my ship was in a foriegn land I was volunteering at a 3rd world orphanage and came in contact with a strain of something that causes tumors in my body. Most of these are small and hidden but cause pain if I stand too long.

Well since from a distance I look pretty normal, I get the worst looks from people when I park in handicapped parking, or use an sap pass at disney. I recieve looks from people, like I am cheating others by not wanting to be in pain. I usually do just try to smile, but sometimes it is hard.

I do have to relay one story from my last trip to disney. We went to see Blast in DCA and they take you in early so that you can sit down without too much hassle, this is also the time that they seat VIP people as well. So to my surprise I was sitting next to my childhood sports idol and his family when we were seated. right next to me was his son and then him. I made small talk with them, and was thrilled beyond belief to be talking about life and such with someone I grew up admiring.

Reality did set in when his son looking at me strangly asked me what all the bumps on my head were, and since I was not in the right frame of mind to answer questions that small kids ask right then I gave the clinical answer. :-) This made the small boy even more confused and was very unconfortable for a few seconds. But his father just got his sons attention on something else in the theater and then was very polite and nice through the show.

I usually handle talking to kids about my disability better, but I guess that we all sometimes are caught off guard, and some classy parents can help make it easier on those of us that are stared at for being different.

Thanks again for the great topic!!

Troy

SueM in MN
08-04-2003, 05:01 PM
Well thanks, Troy, for sharing your story and for bumping this up again. This is one of those "Oldies, but goodies" threads that is noce to have up at the surface once in a while.

s&k'smom
08-05-2003, 07:48 AM
Thanks Troy!

theladyjess
08-06-2003, 08:01 PM
Having grown up with a sister with Down's Syndrom, I am used to sares, comments, etc. Once when I was about 7 I got kicked out of Sunday School for hitting a kid who was making fun of Merry. My family was, and is always willing to answer any questions any body may have about Merry. My mom has never limited where we go because of Merry.

I worked in Pediatrics for 3 years and met several wonderful kids with differnet medical conditions. If anything I always tried to be nicer to them, and more happy to see them. I had several parents who wanted to see me when they brought their child in because they knew I would be understanding and kind. I always adressed the child, wether they were verbal or not. I only had one mom get mad at me and say, "he doesn't understand you, he can't talk". I don't care who you are, you understand kindness and you undrstand hate.

I have fibromyalgia, as well as other challenges (I don't like to call them problems). I have a disabled parking permit and have recieved stares when I've parked in a disabled parking stall. I don't look like I have anything wrong with me, but I'm in pain everyday. When someone says "you don't look disabled" I'm temped to say "well, you don't look stupid". Most of the time I just smile and say that I am.

I get alot of stares when I take my service dog out with me. Because he is small (a mini-schnauzer), people say that he can't be a service dog. I've also been told that I can't take him places beacuse he's not a seeing or hearing dog. I politly inform them that I can and if they don't believe me I will get a copy of the ADA and show them. I've alos threatened to contact the local media if they refused to let me shop with my dog. This usually shuts pepole up rather quickly. Nothing ruins business faster than negitave media attention. Suprisingly I'v had more problems in stores than I've had in resturants.

ZPT1022
08-07-2003, 12:34 AM
I so agree that the key to staying a happy positive person is to credit people with good intentions. A stare is not always negative, a ignorant question is not necessarily rude. Of course we are not perfect,and will occasionaly snipe at people....but a smile and simple explanation is what everyone needs...wether or not thats what they asked for !

I admit it, I stare!! Mostly it is curiosity. No bad intentions are meant by it but sometimes you wonder what is different about a certain person.
I find that I really tend to stare when people are signing, I know, how rude! but I have been learning to sign and I'm curious to see if I can pick up on any words. I know it's not very nice, I do it to people speaking French too, not that that makes it any better. I just find it so fascinating.
As far as people with differing abilities, I think sometimes there is a tendency to stare and wonder what's going on. I know I don't feel like I can ask what is going on, but that's the whole politically correct thing. Although, quite honestly I wonder if it is more rude to pretend that the disability/wheelchair/whatever the particular case is just doesn't exist?? Anyone care to share some thoughts on this?? :)


Becky

tnk4god
08-07-2003, 06:30 AM
I have 2 children, and when we are at the parks and people are staring at us they feel very uncomfortable. If this is not a problem for the adult who has the disability, it can sometimes be a problem for your children, when you are singled out as a family and looked at all the time. If one is a teenager it is even worse. Your vacation can really be stressful if your children cannot enjoy themselves at the happiest place on earth. I hope you know what I mean. :-)

Troy

GeekChic
08-27-2003, 06:50 PM
I'm new to this forum, and I had to come to this forum first and check it out since I am challenged by MS and deal with these issues too.

I want to say that I've read this thread and laughed, cried, and just felt so much for especially the parents of kids living with disabilities. Whatever kind they are, my heart goes out to you, I cannot fathom ever saying anything unkind to a family with such a special child/ren.

I've required a chair for WDW since I was 17, even though I wasn't diagnosed yet with the correct diagnosis, I didn't 'look' disabled then and so people stared a LOT. I was burned by a cigarette at Epcot while in a chair cause someone walked by and held it to their side, they didn't even apologize when I said "ouch!" and they stared at me as if I had no right to be there. I spent quite awhile in First Aid and had to ice it for days.

I thought of something I'd love to say to the next person who a)runs in front of my chair as hubby pushes it B) stares or C) expresses unhappiness in anyway that I am on the bus/in the way/ etc etc. I'd point to the, er, posterior of the person in front of me (which is the view we get from wc's) and say "I'd gladly trade my view of WDW for yours if I could!" indicating the castle or whatever landmark is at eye level.

Reading this thread helps so much. I don't care if people stare at me but I find that my seven year old feels she has to explain my disability to people who stare. I thought about wearing a button with the MS society logo on it or something, maybe will try that.

I hate the looks I get when I (very slowly I might add) get out of the chair, with my crutch in hand, to go to the bathroom. People look at you like if you can walk to the stall you don't need the chair, but they just don't get it! They have no clue the problems I deal with health wise on a daily basis.

One of the best experiences I've had at WDW regarding my disability was on our last trip, though, and I'll share it with you in hopes it might encourage someone the way it encouraged me.

We waited at the Monorail station for the train to come and for the ramp onto it. There was a lady next to me in an electric chair, and we got to talking. By the time we got on the train we were chatting away and her husband looked at my crutch with a questioning glance and a sad look in his eye. I said "I have MS" and his wife responded "So do I!" She had it for 30 years, and had very limited use of her hands and such and was unable to walk at all...she gave me some advice (exercise means your life, she said) and I was really inspired by her positive, grateful attitude toward life. I looked at my husband, who was misty eyed by the time we got back to our resort, and I said "In another 15 years (of having MS) I intend to still be going into the MK to see the fireworks, just like her."

Life is what you make it, make it as good as you can. And as to the rude people...karma has a way of biting people later!

Thanks everyone for the great posts here.

Ro
eccentric, writer, and 'chic geek' :D

SueM in MN
08-27-2003, 08:41 PM
Welcome to disABILITEIS, GeekChic.
And what a great first post here. You had me tearing up and I've had a lot of experience reading touching posts. Your comments about the other lady with MS really touched me. She sounds like she has a great atitude (you too).

GeekChic
08-28-2003, 07:16 AM
Thank you for the warm welcome! I believe I'll be right at home here :)

I'm glad you enjoyed my post, when I go back to WDW in 21 days I'll be sure to try to make note of any info that I come across that might help folks here!

Ro
~eccentric, writer, and "chic geek"

SueM in MN
08-28-2003, 11:42 PM
Here's some pixie dust for a great trip.
And whatever information you have is great to share. There is such a variety of different abilities that waht is not useful to one person is sure to be just what will help someone else have a great trip.

UponAStar
09-03-2003, 10:19 AM
Hi Everyone,

I'm back on the boards after getting loads of great info. for our first trip to WDW last year, thanks again. We're going back the first week of December! The ECV was a lifesaver and my husband even commented, "you know. you look so relaxed in all the photos." Which I was, because I didn't have to worry about how much energy I had left to get from A to B or if I had to stand too long.

As a young woman with MS (fatigue and heat sensitivity primary issues) and a "hot babe" as my DH likes to call me (OK he's a bit biased), I get a lot of stares. Doesn't usually bother me except for the time a young girl ran up to me in the parking lot shouting "You can't park there, you're not handicapped!." Her mother caught up to her and I did take the opportunity to thank her for being concerned and politely explain to her about MS and invisible disabilities. So I guess it was worth the embarrassment.

This year I'd like to make a sign for my ECV and solicit any ideas you may have. Maybe a play on words with MS-Multiple Sclerosis and MS-Mission Space. I also like GeekChic's idea of an MS Society button.

Some thoughts:
"Ask me about my Multiple Sclerosis"
"I have Multiple Sclerosis, what's your problem?"
"I'll trade you my scooter but you'll have to take my M.S."
"M.S. - You choose: Mission Space or Multiple Sclerosis. I've done both."

s&k'smom
09-03-2003, 10:44 AM
I like "I have MS what's your problem".

GeekChic
09-03-2003, 03:00 PM
Funny that you bring up the MS=mission space thing cause every time I see the abbreviation I automatically think MS=multiple sclerosis lol and I read a description of the ride on another forum (the spinning, etc) and said "they named it right, they've created a ride that simulates what it's like to have MS!"

Oh well, we have to keep our sense of humor...

I like this one:"M.S. - You choose: Mission Space or Multiple Sclerosis. I've done both."

May I also suggest:
MS stands for Multiple Sclerosis, not Multiple Stares.

M.ission S.pace: "We choose to go."
M.ultiple S.clerosis:The ride I didn't choose.

Or a sign for the ECV: "Warning: Driver with MS. Get close at your own risk." LOL


"Objects in my mirror are closer than they appear, I have MS!"

I'll keep thinking LOL

SueM in MN
09-03-2003, 04:28 PM
Those are all very funny (clever and informative too). Now all you need is a little card rack to go with it so you can hand out information cards.;)

Actually, my all time favorite was someone who worked in a vet's office and got some cards they put on the cages of the animals that are a little anti-social. It said something like "Keep your distance. May bite."

theladyjess
09-04-2003, 03:51 PM
My husband has suggested that I make cards and keep them in Hans' (my service dog) vest. He said the cards should be written from Hans point of view and tell people what he does for me and have a number or web site where the can get more info on service dogs and inivisible disabilities. I like this idea and will be making some cards when we get home from vacation.

It's hard being young (25) and having an invisible disabiltiy. We were at San Diego Wild Animal Park and a little boy passed me and asked his parents why I was in an ECV. I only wished I was in a position where I could have explained to him, but he was going the oppisite way I was.

Megan's Mom
09-04-2003, 04:24 PM
We have had many rude comments and stares but I always try and remember the funny things that have happened as well. Years ago when Megan was about 2 or 3 years old we were at our church waiting to have our directory pictures. Little background Megan doesn't hold her head up so my DH will hold her in his lap sometimes and puts her hand behind her head to have her sit up better. So we are waiting and this little boy looks over and real loud tells his mother look she's a puppet. I thought his mother would like to melt into the floor. She had taught Megan's Sunday school class and was so embarrassed. But the way he said it was so funny and he didn't mean anything by it so everytime I see Bradly I think of that comment. The other time was when we bought Megan's first wheelchair and another little friend was about 2 and the first thing she did was walk around it and kick the tires like she was buying a new car.

When little kids especially are watching Megan or have that curious look I always try and get them to come over and talk to Megan and I tell them her name and then ask them their name and how old they are. some will ask questions like can she walk or why is in there-her chair? wE don't mind answering questions it is when they stare and won't say anything that is rude. But asking questions is a way to educate children about differences.

Earstou
09-04-2003, 05:09 PM
I've thought about getting cards to pass out that explain my (invisible) condition, especially since no one has ever heard of Chiari.
I also carry a picture of my incision from my brain surgery. I've had people turn green when I show that to them! No more doubts about my right to use handicapped parking!!!

TheMuse
09-04-2003, 11:48 PM
I have RA, but I am lucky enough to be able to do the parks while wearing braces on my legs, though once, I did use a wheelchair. I've seen every degree of curious look, from the double take to flat out horror. The best way to deal with it is to politely explain to others what's up, kids usually ask all sorts of questions, and I usually respond (depending on thier age) with "I use these because my doctor tells me to, they make me feel better." Or something to that effect. Education is the best weapon against fear, and it opens up the doors for so many people.
Here's a tip that I learned the hard way a couple of weeks ago in the MK- if you have mobility problems, STAY CLOSE TO YOUR PARTY!! I was literally run over by a double-wide stroller loaded with kids. Luckily, my brother was nearby to help me up after I yelled, and the people who ran me over were also rather helpful.
I hope this is useful to somebody!

UponAStar
09-05-2003, 07:27 AM
Ro (GeekChic), s&k'smom, SueM -
Thanks for the feedback on the sign for my ECV. As much as I love "I have MS, what's your problem?", I fear other people may not share my sense of humor and it could come across wrong. In the spirit of Disney I think I'll go with a variation on the M.S. - Mission Space/Multiple Sclerosis theme. Keep those ideas coming...

SueM, theladyjess, Earstou-
I LOVE the idea of cards or brochures to hand out if anyone is curious. Maybe we can start a line of disability trading cards and people could collect them like pins. It would open up the line of communication and educate people at the same time. I for one would love a card from Hans/theladyjess - let us know if you make some up when you come back from vacation. (Please know that I am not trying to make light of the seriousness of our various situations and I hope no one takes offense. Humor is one of the things that helps me gets through the trying times. :D )

Megan's Mom -
Thanks for putting a smile on my face. "From the mouth of babes" - I could just picture that little girl kicking the tires of Megan's wheelchair like she was buying new car.

theladyjess
09-05-2003, 03:34 PM
UponAStar--
I was going to make the cards before we went on vacation, but I ran out of time. I will be making them when I get home, as we just found out that we will be going to Hawaii in October for two months. I'll be more than happy to send them to anyone who would like one. Just e-mail me your address.

I like the idea of trading them like pins. Hans has pins on his vest of the places he's been and will be adding more in the next week.

I know too well about using humor to help deal with a disability. My Fibromyalgia causes me to forget things, drop what I'm holding etc. As I told a friend that I hadn't seen in a long time, it's an adventure living with me. Often I can picture what I want, but the word for it won't come. My poor husband often stands there while I go "get me a thing, it's red and round, its in the fridge". He says, "You mean an apple?" Soon I'll be able to hide my own Easter eggs, since I won't remember where I put them.(LOL)

Let me know if you want a card. chads_girl_325@yahoo.com:D

ugadog99
05-14-2004, 09:15 AM
bump bump bump bump

s&k'smom
05-14-2004, 09:36 AM
Earstoyou, now the picture of your incision is priceless! Oh what I wouldn't give to see you show that to some obnoxious guest.

theladyjess, great sense of humor, thanks for the laugh.

SueM in MN
05-15-2004, 08:07 AM
bumping up a good (but old) thread.