Tip for fellow "invisible disability" DISers

[kimbac3]

but it just feels like another battle that I am loosing with my pain, what's next? If I am this bad now, what will I be like in 5 10 15 years?? Oh well thanks for reading, I feel better just venting.
John

John - I am so there with you on that thought. I'm 35 now, I was born with all my problems (birth defects that caused other problems) and I feel like I'm getting worse every day. Besides what I was born with I am in great pain from a serious back injury. I'm at the point now that when my DH and I talk about remodeling, I talk about making it handicapped accessible. Thinking about 10 years from now is just too depressing.

I have my "good" days too. Then I suffer for a week.

The first year we went to WDW I was NOT using a wheelchair. I could do it, I was a still young for crying out loud. By the end of the first day I sure did cry out loud!! I almost couldn't get out of Epcot. I was in agony and tears. When we left WDW that year I had a long list of things I didn't like. Illuminations and Animal Kingdom for example. When we went back the second year I realized why I didn't like them. Pain. Pain really took away my enjoyment and honestly I think some of my families enjoyment. I will never do Disney without my chair again.

I know how hard it is to take that first step and I really do wish you peace with your decision!

Kimba

 

[LindaBabe]

Also, if somebody says, "You don't look disabled," there's always the answer of, "And you don't look stupid, but I guess looks can be deceiving!"

That's a GREAT line! I need to remember that

From the moment I'm dropped off at the airport and walk inside, all of the sudden I'm in charge of my own life.

THAT's what I LOVE LOVE LOVE about traveling solo. My dh is a sweetie, but when he's there, the world revolves around HIM.

I use twist ties to fasten a plastic page protector to the front of my ecv basket. It holds one of a selection of signs a girl over on the design board made for me - my favorite is a picture of Cinderella in her coach and the words say "My coach is in the shop". When ever I'm 'wearing' that one, I get more positive comments than negative.

Also, tried bicycle flags to alert people to the fact "there's someone down here, folks." That one didn't work. Neither does a bicycle mirror to help me see to back up - the handle bars aren't long enough.

 

[sneezy1956]

I've read this whole thread. I have Rheumotoid Arthritis, Fibro and asthma. I use an EVC in the parks. I've got so may ugly looks it's just not worth counting any more.

Unless you have something that really shows you still get the mean looks. Even when they see you get up and you have trouble walking.

 

[mechurchlady]

.

Also, tried bicycle flags to alert people to the fact "there's someone down here, folks." That one didn't work. Neither does a bicycle mirror to help me see to back up - the handle bars aren't long enough.

I got pinned to a wall by people who would not move at AK. I mean they actually had their toes between the ECV wheels so that any movement would have smashe toes. It is very frustrating when you are in an ECV and people cut in line in a store as happened to me in Toontown in WDW or they do not see you at all. At times I wish I had my dads air horn to scare people.

My major problem is undiagnosed conditions like ADD. At age 50 I have learned to adapt or cover up most things but people tend not to understand that I am not lazy and not wanting special treatment. I cannot help that I stick my nose in other peoples' business and am too helpful. I cannot help that I cannot do things like take the trash out or send in my jury duty notice. I even have quit my church for that reason.

Unless you are obviously disabled such as a stimming autistic person or someone with downs then people have no understanding about your hidden flaws. I have seen people get into heated arguments like "No spiders please as I am phobic" which is responded with remarks about how harmless spiders are. My cousin's daughter would start to gag at the site of tiny bits of white stuff like lint on a carpet. Her father will eat onion rings and onions that are used in a stew but are removed. He will not even eat a burger that has had the onions scraped off.

People do not understand language at times. "Cannot" means it is not possible. "Will not" means the person has the ability but chooses not to do that ability. I cannot eat wheat but I will not eat oysters. How hard is it to understand I cannot have something or do something.


Sorry for my rant but it is a sleepless day and lots of pain. I should not eat cheese, yeah I caved in and had a dinner full of dairy.

 

[jackrabbit]

This concerns me with my son. It's his first trip to Disney, and he looks well, but for health reasons I was thinking of requesting a gac. It's tough enough to be an adult getting weird looks, but how do you tell a kid to deal with it?

 

[scooby9932]

I'm so glad I found this thread. I've been to DW quite a few times using an ECV. I have Lupus, Fibromyalgia, Myasthenia Gravis, and more recently cancer. All of these are "invisible" illnesses except for when I'm bald due to chemo (both for Lupus & cancer). I do wear knee braces at times, but only when I really need them as they're hot & uncomfortable in Florida's heat.

I'm a single mom, 38, and have only my daughter to help me. Using a WC just wouldn't be much of a help since I can't use my arms for too long (exhaust the muscles) or I lose the ability to use them for hours or even days.

I went to Disney last year with my daughter for a week in May. We stayed at POR & had a great time, but, alas, I also received many dirty looks, and was actually physically pushed & shoved a few times. My hair had started to return, so I guess I looked like I chose the crew cut I had.

The one incident that stands out from last year was this guy in the food court of POR. They have different stations to get your food & you have to move around from one to another with your tray to get all the bits. My daughter had been such a help to me getting in queues at the parks to get our food since most won't accommodate an ECV, but I really wanted to try to get my own food & give her a break. She went to get her food & I headed out to get my own.

This guy stepped over the front of my ECV to get to the front of the line for sandwiches. He didn't act like he could see me. I fumed a little, but not too much, figuring he maybe had a vision problems.

Anyway, once I had my sandwich, I balanced my tray & was very slowly & carefully scooting over to the refrigerator to pick up a milk. Same guy came up & leaned in front of me, shoving my tray out of his way, to pick up some juice. ARGH!! I was so busy trying to balance my tray & not spill my food, that I didn't have a chance to say anything to him.

I then met my daughter & told her about the guy, pointing him out to her. She said, "Aw, Mom, you're probably being too sensitive. I'm sure he's not doing it on purpose." Feeling like I deserved it, we decided to go over to the bakery station for a dessert. Just as I was pulling up to order, the SAME GUY, stepped on the foot plate of my scooter to hold me back so his daughter could jump in line. I said "Excuse me!" But he would never meet my eyes. Just acted like I wasn't there. My daughter was LIVID! She walked up to him and said in a very loud voice so the CMs could hear, "Mister, I don't know what your problem is, but would you kindly stop assaulting my mother? This is the 3rd time & we will simply not tolerate it! I will call security if I see you even come near her again."

I was SO PROUD! I mean, she was only 17 & he was in his 40's. He didn't answer her or look at her, but the CM was giving him such a dirty look, that he grabbed his daughter (she didn't get her brownie - HAH), turned abruptly, and marched out of the food court leaving his food tray on a nearby cart. The CMs apologized to us, but I told them that of course, it wasn't their fault. Some people are born rude & have a relapse!

I'm planning another trip May 2-9 this year & am very excited about going. I have decided to attach a rather obnoxious bike horn to the handle of the scooter so I can use it if anyone ever tries anything like that again. That ought to get their attention! Those little beepy things are of absolutely no use at all.

Anyway, sorry for the long post. I, too, suffer from typing, I mean talking, oh, whatever, too much!

Good luck & God bless to all of you with disABILITIES, invisible & otherwise.

 

[OneLittleSpark]

Very impressed with your daughter! Go her! Unfortunately there are idiots like him in the world, and we can't stop them going to Disney, but hopefully if we get enough people like your daughter standing up to them, we can put them in their place. Personally, I would have just run him over, but your approach does avoid the threat of legal action! (That was a joke, I'm a very careful driver, honest! Please, never take me too seriously! )


I'm so sorry you've got so much on your plate at the moment . If you ever need people to talk to, But You Don't Look Sick is a wonderful online support group for invisible disabilities.

 

[FFXDSNADDICT]

I have got to say thank you for this post!!!
It means alot to me to see that my daddy is not alone. Thank you again!

 

[Piper]

I just bought some lime green material, some black fabric paint, & some rhinestones. What for? To make a cover for the back of my ECV and a seat cushion.

I'm going to make a pillowcase-like cover for the back and put Mickey head outlines in black paint & space the rhinestones on the outlines. Then I'm going to put my name at the top with rhinestones. I'll leave the cushion and the front of the back (if that makes any sense) blank.

So if you are there June 24-30th--say "hi."

I think it will improve my visability, too!!!

 

[SueM in MN]

I just bought some lime green material, some black fabric paint, & some rhinestones. What for? To make a cover for the back of my ECV and a seat cushion.

I'm going to make a pillowcase-like cover for the back and put Mickey head outlines in black paint & space the rhinestones on the outlines. Then I'm going to put my name at the top with rhinestones. I'll leave the cushion and the front of the back (if that makes any sense) blank.

So if you are there June 24-30th--say "hi."

I think it will improve my visability, too!!!

That sounds pretty cool. Wish I would be there to see it.
How about some pictures?

 

[Piper]

That sounds pretty cool. Wish I would be there to see it.
How about some pictures?

I probably won't start on it until next weekend--but when I'm finished--You've got pictures!

 

[SueM in MN]

I probably won't start on it until next weekend--but when I'm finished--You've got pictures!

 

[OneLittleSpark]

Can't wait! This, I've got to see!

 

[dinghydeb]

Hello all. It is so nice to see so many people able to have mature posts to such a volatile issue. I have fibromyalgia, MS, and diabetes. Sometimes my disability is apparent and sometimes it's not. I've had people make comments to me on my good days when parking in a handicapped spot and able to walk without a cane or the scooter. I've never really had anyone look at me as if I were not in need if I am using the scooter (I am 50 but look in my 30s).

What gets me is this: when I'm in a wheelchair or on my scooter, people tend to ignore me. Let me clarify myself by saying by "people" I mean other guests. CMs NEVER ignore. In fact I think the opposite is true; I get more attention from CMs (both at WDW & DCL) when using my scooter than when I'm walking. Anyway, what irks me is that I become "one" with the chair/scooter. For instance, let's say we're waiting or watching a parade. Strangers (children AND adults) have had the audacity to lean against my chair/scooter, put their feet on them to tie shoes, and repeatedly bump into them. I've also had people that are not looking where they are going and run right into me when I am not moving. Just wondering if anyone else has experienced this? DD

 

[SueM in MN]

Anyway, what irks me is that I become "one" with the chair/scooter. For instance, let's say we're waiting or watching a parade. Strangers (children AND adults) have had the audacity to lean against my chair/scooter, put their feet on them to tie shoes, and repeatedly bump into them. I've also had people that are not looking where they are going and run right into me when I am not moving. Just wondering if anyone else has experienced this? DD

My DD has had little kids sit on her feet when we were in line (I guess her wheelchair footplates are about the right height for a 3 yr old to use for a chair). The thing that annoyed us was that the parents did nothing to stop them.

At Lights, Action, Motors, someone sitting next to my DD's wheelchair used the wheelchair tires as a footrest! Some people are just so RUDE!

 

[OneLittleSpark]

Unfortunately, they can't stop these jerks going to Disney . I've had all these kind of things, except for people putting their feet on me. I must confess, if someone did that to me, they might lose a toe or two

!

One of my pet-hates is the people who stop dead in front of me, and just expect me to stop in time. Well, actually, I don't think there's that much of a thought process goes into it, it's more like they stop and don't even realise I'm there. One of my 'favourites' was when a group stopped dead in front of me, then glared at me when my wheels squealed as I tried to avoid them! Sorry, next time I'll save your delicate ears, and just run you over, shall I?

Thankfully, though, these idiots are in the minority, and there are far more nice and helpful people at the world, to balance out the jerks.

 

[mechurchlady]

I agree with Spark about people who stop in front of me. I waddle slowly and stop slower. On wheels I cannot stop on a dime either. Last year I had a mother with a kid on the leash let the tike run in front of my mother who has brakes. She dropped her feet and stopped on half a dime while I kept going into the back of her chair.

Also I hate when kids are running in lines and scooting past me. The parents do nothing and do not realize that one nudge to my knees and I could fall. The parents do not care that their kid is running ahead of them or behind them,

Cannot stop the rude people from coming nor can you educate them.

 

[katybugsmom]

I am planning on using an ECV when we go to WDW this summer. I'm 42 years old and just had back surgery for a herniated disk in December. I also have Spinal Stenosis which means the more you walk the worse your back will feel. I am very uneasy about renting the ECV for the same reason that everyone has talked about on this thread-being stared at and humiliated in front of my children-DD9, DS3. This is my son's first trip and I don't want anything to spoil it. I too can probably park my ECV if we get FP's for some of the rides as long as the wait in line is no longer than 15 minutes. It will do me good to be able to get up and down a good bit because sitting will also cause my back to start hurting. My surgery,so far, hasn't helped a lot. I won't forget to post my experiences when I get back-hopefully all positive!!! Take care everyone!

 

[Earstou]

What gets me is this: when I'm in a wheelchair or on my scooter, people tend to ignore me. Let me clarify myself by saying by "people" I mean other guests. CMs NEVER ignore. In fact I think the opposite is true; I get more attention from CMs (both at WDW & DCL) when using my scooter than when I'm walking. Anyway, what irks me is that I become "one" with the chair/scooter. For instance, let's say we're waiting or watching a parade. Strangers (children AND adults) have had the audacity to lean against my chair/scooter, put their feet on them to tie shoes, and repeatedly bump into them. I've also had people that are not looking where they are going and run right into me when I am not moving. Just wondering if anyone else has experienced this? DD

Because of my brain malformation, I have constant dizziness. I can handle this if I'm careful, but can't tolerate my chair being bumped. My worst time was in line for Soaring with three little ones behind me. They kept bumping the evc, hanging on the armrest, hanging off the back of my seat, etc despite being asked to stop. Finally my dh and ds just stood behind me and made a wall so that the little darlings couldn't get to me anymore.

 

[Cheshire Figment]

I am planning on using an ECV when we go to WDW this summer. I'm 42 years old and just had back surgery for a herniated disk in December. I also have Spinal Stenosis which means the more you walk the worse your back will feel. I am very uneasy about renting the ECV for the same reason that everyone has talked about on this thread-being stared at and humiliated in front of my children-DD9, DS3. This is my son's first trip and I don't want anything to spoil it. I too can probably park my ECV if we get FP's for some of the rides as long as the wait in line is no longer than 15 minutes. It will do me good to be able to get up and down a good bit because sitting will also cause my back to start hurting. My surgery,so far, hasn't helped a lot. I won't forget to post my experiences when I get back-hopefully all positive!!! Take care everyone!

However, some lines are much longer than others. For example, Soarin', even with a FastPass, is still a very long hike, both going in and going out. And be aware that at Ak and DHS all the lines are mainstreamed so you can stay in the EVC all the way to load (except RnRC), most of the lines at Epcot are mainstreamed, and quite a few of the ones in MK are also.