constructive ways to deal with staring

[Jillpie]

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]

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]

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]

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]

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]

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]

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]

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]

Thanks Troy!

 

[theladyjess]

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]

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]

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]

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'

 

[SueM in MN]

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]

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]

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]

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]

I like "I have MS what's your problem".

 

[GeekChic]

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]

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."