Tip for fellow "invisible disability" DISers

[wheelieman]

When I started using an ecv I always had my cane with me, and if I transfered it was really obvious that there was "something not quite right with that boy". The CMs at DL treated me so well, One of the reasons I loved Disneyland so much was because even when I was able bodied, I was totally accepted as a friend by almost all CM's, and they seemed to enjoy my company as much as I enjoyed theirs.

Now that I am in a wheelchair, I dont get the obnoxious stares, and being 6'5" shows even in my chair, and I woud always bring my caine in case I needed to transfer. I have been "lucky" enough to have a visible disabilty, and if anybody gave me flack or called me lazy, I would have no problem returning a witty comeback. I am good at self deprecating humor, too.

Ironicly, when I had my pass starting in 1985, I was very able bodied. I met a friend named Wayne that I met at the park, and I used to take it upon myself to carry him onto Star Tours and Space Mountain. He was very appreciative, and a really nice guy. He may still hang around the park. Anyway, sorry for the pointless post
God Bless
Dave in Perris

 

[chaospearl]

I'm really happy to see that invisible disabilities is a topic so many people are eager to discuss and thankful to see here. For whatever ludicrous reason, I somehow had it in my head that this was one of those issues that has come up here on the DISabilities forum rather often, been discussed (and vented about) ad nauseum until the topic finally died down, and then two weeks later another n00b wanders in who hasn't been here long enough to have participated in or even known about the previous 4028 times this very same thing has already been discussed to death, and the whole thing begins again. Much to the exasperation of the poor moderators and the old-timer DIS folks, shaking their heads and groaning, "Not AGAIN..."

Yes! Again! Bwahahahahaha!!!

Um, sorry about that.

One point that has been brought up by a couple people, and I think this really cuts to the bone of WHY it's so upsetting to be stared at \ treated rudely while doin' the World with an invisible disability, is that other people tend to assume you are receiving preferential treatment (i.e. cutting the lines) by faking an illness or injury. Those of us on wheels should have a great big laugh at THAT idea.

I think there should be a special circle of Hell (can I say that word?) just for people who glared blatantly and whispered loudly at the sight of an ECV or wheelchair disappearing down the FastPass lane, presumably to bypass the poor schlubs in the queue and be let onto the ride right away.

In that lower burning circle, those insensitive condemned souls would wait in an interminably long queue to board the ferryboat on the River Styx, finally making it to the very edge of the dock only to be greeted by a large skeletal figure in dark cowled robe, "Hey there and welcome to Hades! Now you just come right on over here and wait in this corner. We've got a special ferryboat vehicle just for you! It'll be coming around in just a few minutes, so just hang out here and I'll grab you when it's time to board." And then they would wait. And wait. And wait... watching as other tortured souls made it through the entire queue and were piled quickly into the normal ferryboats and sent down the river one by one. No ride for you!

I can only think of a handful of rides where being on wheels doesn't usually make the wait LONGER than it is for ambulatory people in the regular queue, and in most of that handful, CMs go out of the way to ensure that the disabled person waits an equal amount of time (as it should be). In some of the others, you're missing a great, fun preshow. I don't know if there really are ANY rides where people in chairs or scooters regularly have a significantly shorter wait time without missing the preshow or giving up something else.

cheers
Jenni

 

[SueM in MN]

IFor whatever ludicrous reason, I somehow had it in my head that this was one of those issues that has come up here on the DISabilities forum rather often, been discussed (and vented about) ad nauseum until the topic finally died down, and then two weeks later another n00b wanders in who hasn't been here long enough to have participated in or even known about the previous 4028 times this very same thing has already been discussed to death, and the whole thing begins again. Much to the exasperation of the poor moderators and the old-timer DIS folks, shaking their heads and groaning, "Not AGAIN..."

I cringe when it comes up on other boards because I know it will turn ugly and people will get hurt.

It does come up here fairly often, but it usually turns out like this thread has. There are enough frequent posters who are feeling the same way to come up with a good discussion. People who don't have experience with disability, either personal or with a close friend or family member, tend to not hang out here.

 

[ntsammy5]

People who don't have experience with disability, either personal or with a close friend or family member, tend to not hang out here.

That's true. I am not disabled but have done WDW with friends & family in ECVs and WCs so I have a little experience and I do watch this board. To OPs point, I just had a lesson in invisible disabilities a couple of weeks ago when we were at WDW. We were down to watch my daughter run the marathon and she was all over the place so one day her husband and I hung out in Epcot together.

Both my daughter and her husband are DPTs (doctors of physical therapy) and he and I were sitting on the benches near Norway drinking beer -- a good thing to do. There were several people going by us in ECVs and WCs many of whom looked like they didn't need to be in them. My son-in-law pretty much described each ones disability, some very serious, when they went by. My point is that it takes an expert to tell and even he couldn't always tell what the problem was.

People should chill out, especially when they're at WDW and have a little respect for other people's feelings and conditions. You don't have to be disabled to get your feelings hurt at the happiest place on earth -- unfortunately it happens all the time because of thoughtless people. Just try not to let it bother you. Easy to say and hard to do.

 

[OlderMan]

...I can empathize.

Many years ago, my DW took a very bad fall from her attic to her garage floor.

Literally destroyed her left ankle. After many surgeries and much rehab, she still walks with a limp--generally not noticeable unless she's very tired.

When we lived in Upstate NY, she had a handicapped parking permit. Doctors told her if she ever hurt than ankle again, it could probably not be repaired. She only used the parking permit if we/she were out during the winter and there was a risk of snow or ice on the ground.

I remember the 'looks' and occasional comments from some people who knew nothing about her or her situation.

Again, I empathize with your needing a WC/ECV.

If you ever see me at WDW and need ANY assistance, please feel free to ask--if I don't volunteer first!

 

[OneLittleSpark]

I find it so sad that this even has to be a topic of discussion.

I too have hidden disabilities. My psoriatic arthritis affects my hands, feet, knees, hip, back and now I also have been diagnosed with fibromyalgia. That and all the osteoarthritis from the years and years of walking and standing as a nurse and I can just barely make it through my own home some days.

I really want to come up with a bumper sticker for my own ECV regarding this but in my heart I know that would be rude and that just isn't what I am.

Pixie dust and blessings to all of us who need help, no matter what others think.

If you wanted a 'non-offensive' bumper sticker that would still let people know you weren't faking, you could go for something like "psoriatic arthritis sucks!". That way it's not 'having a go' at anyone, or being rude in any way, it's just showing that you have more on your plate than they may be able to see, and might make them stop and think. Just an idea, HTH!

Wow, I came sneeking back in here with trepidation to make sure nobody had taken offense to my post, and instead I've found all you lovely people thanking me for writing it. Ha! My thanks to you as well, then, for such a pleasant reception. I have only recently de-lurked to join the DIS community as a contributor, and I've worried that... I don't know, that you wouldn't want me?

Aww! Of course we want you! We always want more lovely, understanding Disney fans such as yourself! The more the merrier!

i actually had a great wheelchair experience on saturday... i used my wheelchair at IKEA (which is massive if you don't know) and there was a little boy who kinda stared at me (doesnt bother me with kids) then broke out in a huge smile and yelled (as all 3 yr olds always do ) "ITS MICKEY MOUSE!!!" He had no problem with the wheelchair, he was just so excited i had a mickey mouse patch on the back! just thought that was too adorable!

That's so sweet! Bless the little kid! I get similar things sometimes with the fluffy tassels I have on my wheels - the kids don't care two hoots for the fact that I have wheels, just that they're cool!!


Many hugs and thanks to all of you who've posted, and who make this board the warm, receptive place it is! You're all great guys!

Oh yes, and welcome to chaospearl, wheelieman and anyone else who's just joining us! Come on in!

 

[mamaloya]

I am started to feel a little anxious about us a w/c this trip. I leave in 5 days. The only thing that makes me feel better is that it is not an ECV and it is not a WDW rental. Even though it is a long term rental, it looks like a personal w/c. I will also have my cane with me to help getting in and out of the low boats.

I had a good day yesterday and one the day before. I was thinking, "Hey, I am not going to need my chair now!!!" Then, I went to get groceries. I was so glad to have the disabled parking tag when I left. I don't think I could have made it any further. Today I am in so much pain. It is clear that I will not be walking at WDW.

I do have to say that if anyone comments on my chair, I will just tell them that I would gladly trade places with them. They can ride in my chair all day and have all that comes with it "special" entrance, rolling from ride to ride, the pain and fatigue, and the tears of frustration. I, in turn, would get what they have. Freedom to run to catch the bus before it leaves. Ability to take a short cut that involves stares or a very narrow path. No pain at the end of the day. I wonder how they would respond to that.

I was in a w/c one time before. I wonder if people realize the frustration of not being fully free. I know my dd11 is enjoying playing around in my chair right now. She doesn't understand how a need for it would not be fun.

BTW, if anyone is going to be there Feb 1-10, I will have a green mickey head on the sides of my w/c that someone on the camping board made me. Feel free to say HI!

 

[mishy]

I'm so glad I found this thread. I to have an invisible disibility. I had to have a lung removed at age 10 and have had asthma my whole life. I can never keep up with anybody. I rented an ecv on my honeymoon in Las Vegas in 2006. I was the best thing. I finally could keep up with husband and I didn't feel bad that he had to stop every minute. I felt, like wow, this is what's it like to get somewhere without feeling tired!

I might have to take your suggestion and use an ace bandage.
I wish people would be more understanding and think first before they judge!

 

[ejmbibb]

I have been lurking on this part of the dis for a while, (mostly in camping and photo) but when I read this thread I thought I would post here too. We are leaving for disney in about a month, and dw and I are fighting about the ecv all the time, she wants me to get one, I don't. Mainly because I have "invisible disablitly", OA in anlkes knees and hips. I have had 2 ankle surgeries, need to have it fused, and was told 5 years ago that I needed knees replaced. My problem is that I am 6'8" and about 400 lbs. I am too tall and to "fat" to get them done. My adversion to the ecv, is that when people see me a wheelchair or using my hadicap parking pass, they just see a "lazy fat guy".
I am trying to convince myself that it would be better if I used an ecv, like wife wants. I know last time 2 years ago, by the end of day, I was chewing on pain meds like pez and was shaking from the pain. I would lay awake for hours after we got back to camper, just because the pain was so bad. I know that my dw and son worry about me all day, can he walk here, can he stand in line for this etc. I KNOW I would be better off with ecv, I just cant get past what I know poeple will think... just venting thanks for reading.

 

[Cheshire Figment]

I am trying to convince myself that it would be better if I used an ecv, like wife wants. I know last time 2 years ago, by the end of day, I was chewing on pain meds like pez and was shaking from the pain. I would lay awake for hours after we got back to camper, just because the pain was so bad. I know that my dw and son worry about me all day, can he walk here, can he stand in line for this etc. I KNOW I would be better off with ecv, I just cant get past what I know poeple will think...

Please ask yourself the following questions. Here are the suggested answers to go with them.

1. Are you disabled (even temporarily)? Yes.

2. Do the people you are traveling with, such as your family, know you are disabled? Yes.

3. Do you expect to meet anyone you know during this trip who may not know you are disabled. Probably No!

4. Do you expect to meet a bunch of people who you will probably never meet again in your life? Probably yes!

5. Is there any reason at all that you should care what these people think about you? Absolutely No!!

6. Will using a wheelchair or ECV make for a better vacation for you and your family? Absolutely YES!

Many years ago, the first time I rented an ECV at Disney my wife commented, that evening, that she had a better time at the park that day since we did not have to stop for me to rest, and that also she could see I was not in pain.

 

[OneLittleSpark]

To mamaloya, ejmbibb and anyone else worrying about using a mobility aid. I'm not going to pretend that adjusting to a wheelchair / ECV is simple, easy or fun. Sometimes it takes a long time to get your head around the idea. I know that you can batter yourself over the head with all the logical reasons why you should, and still not want to do it.

A couple of years ago, before my condition got as bad as it is now, I thought I'd be able to do a day in Disney without the cane. Boy was I wrong! I ended up sitting on the floor of the Norway shop, next to a troll, on the verge of tears. Thankfully the manager took pity on us and went over to First Aid to get a wheelchair for me. I now use a wheelchair to get about outside the house, and it and I have come to an understanding. I had to really, without it I'd be pretty much housebound!

As for what other people think, [insert expletive] them! Unfortunately there are jerks in this world who will question everything and everyone. They will tear down people just to make themselves feel bigger, and will get angry with anyone they think is getting something they're not. Equally unfortunately, Disney aren't allowed to ban these people from Disney. However, they may be ruining their own holiday by spending the whole time whinging about all these 'fakers', but that doesn't mean you have to let them ruin yours too. Hold your head high as you wheel past them, having a whale of a time with your family and don't give a flying monkey's what they think. After all, you wouldn't care if one of them hooted at you on the road, so why care if they 'hoot' in Disney? (random example, I know, but I have brain fog at the moment. It made sense to me, anyway).

I could stay here all day saying encouraging words (all of which I truly mean), and I'm sure you'd listen (or read) attentively and nod understandingly. But ultimately, only you can decide what is the best course of action for you to take. Just do one thing for me: whichever way you choose to play it, please have a magical, fun and happy trip with your family, free from worry and pain.

 

[DisneyWheeler]

With me, most people assume that the reason why I use a wheelchair, is what they see on the outside-the effects of my genetic syndrome with my fingers and feet being smaller than an average person's. They don't know that the real reason why I use a wheelchair is on the inside of me (scoliosis, osteoarthritis, dystonia and left-side hip dysplasia. When people see me out of my wheelchair, it's, "Hey, look at you walking!", "It's nice to see you up and about." Especially if I'm using my walker. I know that they are encouraging words, but they don't understand my whole story. When they see me back in my wheelchair, I get looks that look like, "What are you doing back in that."

The scoliosis is what's really slowing me down, and it sometimes causes me to walk a little lopsided.

Samantha

 

[Coloradomom]

About a year ago I suffered a bad ankle injury, one that I likely will never fully recover from. I can walk limited distances, but a typical mall shopping trip about does me in for a day. For our last WDW trip (the first after my accident) we ended up purchasing a wheelchair and I am pleased to say that I did NOT get any "looks" or comments. Even when we did the Keys to the Kingdom tour, everyone there was understanding when it took me a little longer to get on to an attraction(I can walk some, and onto rides). I appreciated that so much. One incident summed up how nice folks were. We were staying at SSR and I decided that afternoon to walk to the main pool. When we left I was very sore, so walked slowly as we had quite a walk (stayed in the Paddocks). As we headed out, a housekeeping golf cart stopped and offered me a ride , one of them said"I can tell you are having a hard time, did you have an ankle injury?" Turns out one of them had an injury similar, though not as severe, and she recognized the limp. They gave me a ride back to our room, cannot tell you how much I appreciated it! So there are good folks out there, you cannot worry about the ones who are less than sensitive.

 

[OneLittleSpark]

So there are good folks out there, you cannot worry about the ones who are less than sensitive.

Most certainly! I think for every one jerk I meet, I meet at least ten really decent people. For every idiot who cuts me up, there will be five or ten who'll offer me a hand with a door, or stand aside to let me pass, or offer to reach things from a high shelf for me. I think being in a wheelchair allows you to see the best in humanity, as well as the worst.

 

[mishy]

I have been lurking on this part of the dis for a while, (mostly in camping and photo) but when I read this thread I thought I would post here too. We are leaving for disney in about a month, and dw and I are fighting about the ecv all the time, she wants me to get one, I don't. Mainly because I have "invisible disablitly", OA in anlkes knees and hips. I have had 2 ankle surgeries, need to have it fused, and was told 5 years ago that I needed knees replaced. My problem is that I am 6'8" and about 400 lbs. I am too tall and to "fat" to get them done. My adversion to the ecv, is that when people see me a wheelchair or using my hadicap parking pass, they just see a "lazy fat guy".
I am trying to convince myself that it would be better if I used an ecv, like wife wants. I know last time 2 years ago, by the end of day, I was chewing on pain meds like pez and was shaking from the pain. I would lay awake for hours after we got back to camper, just because the pain was so bad. I know that my dw and son worry about me all day, can he walk here, can he stand in line for this etc. I KNOW I would be better off with ecv, I just cant get past what I know people will think... just venting thanks for reading.

Please consider using an ECV. I know it's hard getting past what other people think. But, you will feel so much better. You will have tons more energy and your family won't be worried all the time.
I totally agree with one little spark, as for other people, $%#@ them.

Go to disney an enjoy your vacation. Have fun. And don't let those jerks get to you.

Michele








Go to Disney and enjoy your vacation with an ecv.

 

[ejmbibb]

I really apprecitate the encouraging words... I really do. I have always been a BIG guy, I have been overweight since childhood. And as most of you know, kids can be mean... well even tho I was fat, I was always healthy and energetic, but after my first ankle surgury, things have gone down hill, and it has been really hard for me to come to grips with my disibility. For the first couple of years when I couldn't do the contracting work that I used to do, I was really depressed. But then when my son was born, I was able to stay home and take care of him, I was the primary care giver. My amazing wife is a nurse, and she has been great with me, she has pretty much been the one to push me adapt to what I can do. It started with a parking permit, which I would never use, but one day as I sat in the truck while dw and ds went shopping by themselves because I was hurting, I watched all the people park in the hadicapped spots and jog into the store. So I thought to myself, if they are comfortable to park there, then I should be too. But I still park in the furthest spot as possible, so people worse than me can be closer.

Then after 2 more years, she convinced me to apply for disability, and of course, I was denied. Well I hired an attorney, and when we went to court, it took about 2 minutes, the judge looked at my records, asked the other attorney why they denied me, listened to him for about 4 seconds, stopped him and said that I qualified. My attorny said it was the fastest and easiest hearing he had ever been too, (still took his whole fee tho).

I guess that I should get the ecv, my dw has been right with every thing else, 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

 

[ntsammy5]

Slightly OT, but -- Hey there ejmbibb! I see you're straying off the camping boards!

 

[ejmbibb]

Yep, it took me months to figure out that there were other things in dis life other than camping LOL.... just venting about some of the bad things in my life.... camping is one of the great things...

 

[ntsammy5]

.. camping is one of the great things...

Couldn't agree more.....

 

[SueM in MN]

I am trying to convince myself that it would be better if I used an ecv, like wife wants. I know last time 2 years ago, by the end of day, I was chewing on pain meds like pez and was shaking from the pain. I would lay awake for hours after we got back to camper, just because the pain was so bad. I know that my dw and son worry about me all day, can he walk here, can he stand in line for this etc. I KNOW I would be better off with ecv, I just cant get past what I know poeple will think... just venting thanks for reading.

That's how my FIL was for the last 5 yrs before he finally rented an ECV. He would come back to our DVC 'home' early in the day and spend the evening with his legs up, ice on both knees.
He was basically walking around with cartilage rubbing against cartilage on both knees. He was afraid to rent a scooter because he had seen what happened to his granddaughter (my youngest DD), who has cerebral palsy and uses a wheelchair. My FIL was somewhat overweight and figured people would think he was using it because he was fat and lazy, not because he had knees that needed replacement.
Ironically, even though DD still gets some comments, people seeing my FIL assumed he was 'qualified' to use a scooter because of his age - over 70, not his invisible disability. The first time he used a scooter, he told us later was the first time in 10 yrs that he had not spent the evening in total pain.

During the years he didn't use on, he gave up a lot.
He basically walked from bench to bench in the park and didn't go any farther in than he knew he would be able to walk back out. He spent twice as much time walking to the bus from the park and back so he could stop and rest when the pain got too bad. He stopped touring with us because he didn't want to hold us back; that meant he saw his grandchildren only back at our resort in the evening. He gave up seeing attractions he wanted to see because he was afraid the walk was too far.
I'm glad that he did start renting a scooter when he did. The last 2 years of visits, he did use a scooter, spent more time with us and saw things he had not seen in 10 years. Sadly, he died in June of 2006, but at least we had many years of visits to remember and had the last 2 wonderful visits.