your opinion or how to answer ? from my kids regarding disablities and "differences"

[Talking Hands]

I am often asked why I am so short by kids. I am barely 4'8". I just am and that is what I tell kids. Nicest thing happened to me at school last year. One of the juniors decided to give me a nickname. He dubbed me the "Hobbit" because I remind him of the characters in JRR Tolkien's books. Now I have a great answer for people. I'm just a hobbit.
As to asking why I use a wheelchair, I prefer that kids ask me directly. I'm really fine with explaing to them that I use it because if I don't use one I cannot walk more than a few feet without pain in my hips, knees and back. It is a way I can enjoy the parks and not end up in bed for a few days.

 

[Figaro]

I'm almost never bothered when children ask me why I am in a wheelchair. There are times when I don't have the energy because am in too much pain to have any kind of a lengthy interaction, but I will always tell a child the simple answer which is that my legs don't work very well.

What does get a bit tiresome is when adults that I don't know ask very personal questions. My favorite example is when we were waiting for the bus at ASMusic and two women who I had never seen before came over and asked me if I had sex!

I looked at them like they had two heads and refused to answer. Fortunately the bus arrived and I didn't have to deal with them anymore, but I swear some people think that the person in the wheelchair is whatever "disease" that they have and not a real, live, breathing, thinking and feeling individual who doesn't care to have total strangers ask extremely personal questions.

 

[3DisneyNUTS]

I'm almost never bothered when children ask me why I am in a wheelchair. There are times when I don't have the energy because am in too much pain to have any kind of a lengthy interaction, but I will always tell a child the simple answer which is that my legs don't work very well.

What does get a bit tiresome is when adults that I don't know ask very personal questions. My favorite example is when we were waiting for the bus at ASMusic and two women who I had never seen before came over and asked me if I had sex!

I looked at them like they had two heads and refused to answer. Fortunately the bus arrived and I didn't have to deal with them anymore, but I swear some people think that the person in the wheelchair is whatever "disease" that they have and not a real, live, breathing, thinking and feeling individual who doesn't care to have total strangers ask extremely personal questions.

OMG unbelieveable!!!! Ok time to think of something to say back....
'OMG are you hitting on me!!!!!!!..... ewwwwwwww NO THANKS yuck!'
I mean what would make anyone think that is even remotely appropriate to ask. My God!

 

[Figaro]

I have NO idea why they thought that was an appropriate question to ask a total stranger. I just looked shocked and somewhat disgusted and shook my head sadly and then didn't look at either one of them again. And then to top it off when they got on the bus they were talking about how "rude" I was. Which made me laugh out loud and my spouse (who had been up talking to the bus driver to let him know that there was a wheelchair to be loaded) asked me what was going on and I told him that I would tell him later on.

I just think that some people don't have a very good brain to mouth filter.

 

[3DisneyNUTS]

I am really tall and I know this doesn't compare at all but I could see as a kid how it gets old with the questions. 'Wow you're tall!!!' yeah....."you play basketball" nope....I must have heard that 400000 times. Now it's "your husband tall too?" what does that matter? But I go with it. Then the do you like it? Um do I have a choice?? But I actually do except buying jeans LOL But I bring this up because overall people tend to be dingbats in some situations, disabilities or not. The best is when a cashier assumes I am a guy because of my height and says sir before looking up then have a look of complete embarrassment when they realize what they just did. I try and shrug it off since it happens. Not so much anymore since tall is getting more "normal" but alot more in my 20s.

 

[BroganMc]

I just think that some people don't have a very good brain to mouth filter.

I've been asked the same thing before. Not in Disney though. And I was so shocked by the question I didn't come up with a snappy retort until much later. I really wished I had just rebuffed the question as a come on.

You wonder if those folks follow you into the bathroom and peek under the door just to see if you actually have an alien head or something.

To the OP, I'd say 95% of the time I'm more than happy to answer questions of inquiring minds, child or adult. The 5% I'm not is reserved for the questions that are just inappropriate invasions of privacy (like that sex question) and for the 15th person who's asked me that day.

When you have a visible disability you do get looked at and asked about a lot when you go out. It gets to the point where you feel like you're on stage ala Paris Hilton. When people keep asking "what's wrong with you", you do start to feel like something is wrong rather than just different.

What you told your daughter was the best thing. It was nonjudgmental yet instructive. If I had overheard you saying that about me, I probably would have chimed in with a Q&A to answer her questions and reward you... no matter if I had filled my quoted for the day and was getting a bit tetchy.

 

[KPeveler]

I will not answer the question "what is wrong with you?" there is NOTHING wrong with me. I am just having to live my life a little differently. I will, however, answer "what happened?" most of the time. When i do not want to answer it, I just say "oh, its a genetic thing" and let them fill in the details for themselves.

What drives me crazy is when people feel the need to say something to "make me feel better." I do not need comfort from random strangers. in fact, all it does is remind me of my illness and make things worse. I also can't stand when people say "you've got it made - you get to roll around all day!" (actually had someone say that to me in Best Buy!) What i wanted to say was "Yeah, I have this wonderful neuro-degenerative disease that means i could lose the ability to walk at all, or speak clearly, or even control my bladder. I have it made! I get to pee my pants!" I did not say that, but people think they're being cute or funny or comforting, and in fact all they are is annoying or rude.

I don't mind answering kids questions. Cause if you make kids comfortable with people with disabilities, then they may grow up to be conscientious, non-idiotic adults.

Here are two examples of kids who are plainly comfortable with people with disabilities:

When I was in IKEA, I was in my wheelchair and a 5 yr old (or about that age) twisted in his grandma's arms to look at me after i passed. I don't mind kids staring (i'm sure I did at that age), but I turned back around, and he caught my eye and yelled "You have MICKEY MOUSE!!!!" I have a Mickey patch on the back of my chair, and THAT is what excited him. he could have cared less about my wheels.

when I was coming home from disney last time I was in the disney store in the orlando airport and a little girl of 6 came up to me (her name was hannah i think) and she had lost her mom. she never asked or made a comment about my wheels, just asked me to help her find her mom. I don't know if I looked like someone on sesame street or something, but she knew I could help her find mommy and couldn't care less about my wheels. it was SO cute.

 

[Figaro]

when I was coming home from disney last time I was in the disney store in the orlando airport and a little girl of 6 came up to me (her name was hannah i think) and she had lost her mom. she never asked or made a comment about my wheels, just asked me to help her find her mom. I don't know if I looked like someone on sesame street or something, but she knew I could help her find mommy and couldn't care less about my wheels. it was SO cute.

I, too am a lost child magnet. I think it is because I am closer to their eye level and that makes it easier for them to approach me.

 

[KPeveler]

i like to think it was my radiating beauty and superior wit that made the child come to me, but i suspect you are right we are all so used to seeing a child underfoot after being at disney that most people don't notice one in a store. she just came up to me, all serious, saying "I can't find my mommy." it was absolutely adorable!

 

[SueM in MN]

I don't remember if I mentioned this story on this thread before (it's a pretty old thread), but my youngest DD has cerebral palsy and has used a wheelchair since before she was 3.
On the evening before we were leaving for WDW when she was about 6, I was walking her back to her bedroom after her bath. Since she has no standing balance and her legs tend to 'scissor' or get tangled, walking her is not that easy. Anyway, during the walk back to her room either she or I tripped. I ended up turning a bit to avoid her head hitting against the top of her dresser. She hit me (apparently a boney part) hard enough that she got a black eye and a bruise on her cheek.
During our trip, we heard some little kids asking their moms "What's wrong with her?" and the answer was usually something like "I suppose she was in an accident. That's why I make you stay in your car seat." I even had some people come up and ask say they were sorry to see a 'hurt one' in WDW and asked me when her car accident was and whether anyone else was hurt.
I was REALLY happy when her bruises faded and she could just be a little kid in a wheelchair again.

 

[mcco5543]

Dear Wheelsie, I am also a 28 year old woman with Spina Bifida who became an amputee at 21. People always assume I'm a wheelchair user because I'm an amputee as well and I have to explain that one doesn't really have anything to do with the other. I have also experienced children being verbally and/or physically reprimanded for looking in my direction and inquiring. It's really sad and I feel just as upset about it still too! HUGS!

 

[mcco5543]

I gotta second this one!!

Children ask me all the time..."Lady what happened to your leg??" (as some of you may know amputaion from malpractice) I answer them that "the Dr took it....."some then say "but why??" I smile cutely as I never have figured how to answer this one with a non joking response, and say..."I think the Dr needed it a little more than I did" I know its corny but it seems to make them feel better If anyone has any suggestions how I can answer this with a NON joking answer, so that the real reason can be understood by the lil tykes, Id appreciate some input LOL

Wheelsie Co-Moderator of disABILITIES
and
DisneyTips
wheelsie@mail.wdwinfo.com

Wheesie, I also struggle with this question from young children. I had a bone infection and the only way to cure it was to remove the leg. This is a rather scary sounding answer so I don't like to put it that way to kids. I just say that my leg "got sick" and the dr had to take it. Kids seem to be satisified with that and more than that dont' seem to be to terrified. I also add that most people's leg's don't get sick but mine did and that's what the dr. did to make me better. Kids seem to understand "sick" becuase they've been sick before. I don't know if you could say something similar. Just an idea

 

[carj]

If someone asks "What's wrong with his leg? or What happened" in a rude way, I smile and say "nothing happened" and get away from the rude people.

I don't mind talking about his leg at all, but I don't accept their assumption that something is "wrong" with him.

Very few people are ever like this. Most people are friendly and reasonably curious about the difference which is normal.

My son will point out other amputees to me because he finds it neat that there are others out there. Once he asked if we should tell a man who had an amputation but no prosthesis about XXX hospital so they could get a prosthesis. I explained that not everyone who had an amputation can wear a prosthesis so they might not appreciate his suggestion!

 

[DisneyWheeler]

I've had adults, and kids especially ask me various questions about why am I different. Here's my answers to them:

1. What Happened To Your Hands & Feet (if I'm wearing my sandals with my socks)? Why Are They Like That?

My answer: God made me this way because he wanted my mom to have a special child. The syndrome I was born with, fused my fingers and toe bones together at birth, so the doctor had to due multiple surgeries on my hands to give me five straight fingers. He left my toes fused together. I've had 45 surgeries altogether to fix all of the parts of my body that were affected by the syndrome.

2.Why Do You Have To Use A Wheelchair/Walker?

I have severe scoliosis in my back, and osteoarthritis. My wheelchair/walker helps me get around to where I need to go.

My walker is one of those Kaye posture control reverse walkers that you'd see most kids using (I have the adolescent model), and I get questions asked all of the time about where I got it, and what model it is. You rarely see adults using them. Mostly kids. I love it because it keeps my back straight when I'm walking. I've had two previous ones that you push, and they hurt my back a lot. Even though they were at the right height for me. I owe it all to my friend who worked for the DME supply company that I go through, in getting it for me without me having to pay for it when the insurance didn't approve it.

3. What's That Thing On Your Head? (Referring to my headband-style bone conduction hearing aid)

It's called a "headband-style bone conduction hearing aid". It helps me hear because I'm profoundly deaf in my left ear. I'm going to be getting a bone-anchored hearing aid fairly soon.

One person that was curious about it told me that she had a BAHA, and she showed it to me. I was the one who began asking her questions about it, and she was happy to answer them. They're the "top of the line" in hearing aid models today if you have profound hearing loss in one/both ears like I do.

Samantha

 

[mistymouse5001]

I always strike up conversations with the ppl or there parents like we're old friends. Throws everyone off guard, and it makes everyone forget the thing that seems to make said person different.

 

[Eeyores Butterfly]

Talking hands- I get where you're coming from on the height thing! I am 4'10" and have worked around children for a long time. I taught preschool over school breaks, and one time got tackled by my five year olds screaming "Miss Jessi! Miss Jessi! We're almost as tall as you are!" The third graders I was with this past spring thought it was a hoot that most of them were my height or taller. Several have asked my why I'm short, and to me it's no big deal. Actually, I'm frequently mistaken for a student there. Even when I am in my "teacher garb" the lunch ladies tried to give me the kids lunches until the started recognizing me.

As for the OP: I myself don't have a disability, but I work a lot with kids with disabilities (I am earning my Master's in Special Ed) so my perspective might be different. Evey child is curious. Unfortunately, not everybody agrees with how to handle this. Some would prefer to be asked about their disability, while others would not be. There's no way to tell. A good temporary answer to why somebody is different is "God made them that way." You can tailor a short response to other disabilities (Their legs don't work like yours do so they use a wheelchair to get around, they can't hear words so they use their hands to talk) and most of the time kids will be okay with this. Later on, outside of the situation, you can have a chat with your child about tact (if they are old enough.) Children simply don't comprehend that they may embarass people or it is inappropriate, before the age of 7 developmentally they wil lhave a hard time with this. The best thing you can do is expose your child to all types of people so to them differences are normal. There is a great series we use in our school. Each book is entitled "Bringing ___ to School" and talks to kids about different disabilities and then explains how the kids are just like all the other kids. You can see if your school or library has these.

With the kids in our school who have special needs, the teachers typically will explain to the kids if they ask why the child is different. For the most part, the kids are absolutely wonderful and treat the children just like any other. We live in a rural area and people come all over for the special ed program due to the partnership with the university, so the kids here have more experience with people with differences than the average kid.

 

[darthtatty]

ive got to say on my last trip to Disney i felt free. sure my son was stared at on the odd occasion, but living in England i was soooooooo used to that.
at Disney i hardly noticed the staring or any comments, now it could of been that i was having such a great time i didnt notice any.
there was only a couple of times that i can remember that someone came up to me and said,hi just wanted to come up and say hi to your cute son (he is cute and always smiling) then theyd say, is it CP he's got? then talk about someone they know who has CP.

in the Uk everywhere we go there is constant staring and comments of why is that boy in a wheelchair.
has noone ever seen a wheelchair before?


i usually cope with the staring by saying loudly to my son "why didnt you tell me you were famous?" or talking about pictures eg oh i must remember to get my PICTURES developed
son usually stares back at anyone who stares at him

 

[kayleighnik]

I've been stared at to the point where someone has been walking backwards, just to look, and then tripped over. Serves them right. They could have just asked. I wouldn't have minded.

 

[WheeledTraveler]

I'm pretty much always willing to answer kids' questions, but adults tend to grate on me. If it's an adult asking for a kid (with the kid right there), it doesn't bother me so much, but most of the questions I get are from adults without kids around. As far as I'm concerned most of the time people I don't know have no need to know anything about my medical history. I do agree with those who get upset with parents for yelling at their kids for looking or asking questions. If I don't want to answer a question, I'll say so. I can understand how for younger people with disabilities this is more intrusive (I remember getting sick of people asking what was wrong when I was in high school and I wasn't even obviously disabled then), but I"m becoming more complacent as I get older.

The other thing that gets to me is the random people who "bless" me or say they'll pray for me or something like that. I'm about to move to NYC and lived there for a few months last summer and I'm not sure I've managed to set food on a sidewalk there since I started using my wheelchair without someone offering to pray or bless me. I'm fine with myself how I am and I don't need to be cured or changed.

As far as the sex question goes, I think I'd be the person who says "Why? Are you offering? Too bad by asking so quickly you've cut yourself out of the running" I'm not sure if any of you have seen Murderball (about quad rugby and the people who play it), but there is a great scene where some of the guys get asked by a couple (able-bodied) girls about sex. I have a feeling it was a fabricated moment, but I've met enough people who've assumed that I *can't* that there are times when I don't mind the question. Just not as the first thing the person ever says to me.

 

[SereneOne]

My daughter has VATER/VACTERLS Association. It is an acronym for multiple birth defects. She has rib and vertebrae anomalies, an 11 mm hole in her heart/ASD, has one good kidney, has had tethered spinal cord surgery, and Reactive Airway Disease. She also has a gtube for feedings, although she can eat by mouth. She did have hypoparathyroidism, but that has gone away. She was premature and her twin sister, Emily, died shortly after birth.

When children or adults have asked me in the past, I explain Meg's condition and have even talked about how we all have challenges, whether they be physical, mental, emotional, or spiritual. It is up to us to make these challenges into opportunities and also to turn them into strengths. Such as wheelchair basketball players, or that artist and writer who is paralyzed except for her head, the mom with no arms who drives, takes care of her house and children with her feet. I know people whose challenges I can see doing things I say I can't do, motivate and inspire me, they give me hope and courage.