I need a good talking to

[bsmcneil]

A few facts:

I'm 25, male, "look normal" and have muscular dystrophy (and some hip bone issues). I was diagnosed a few years ago and I've gone to WDW since then...each time walking. And each time with a lot of pain. This time, I'm feeling worse overall (trip's in Dec). I mean - I've taken a number of steps to increase my care because it's gotten worse.

So I'm going in Dec...and part of me thinks I should get a wheelchair. I simply can't imagine how I would do the trip without one (and add to that going to work when I get back!). But I also don't want the looks, stares, comments, etc to eat at me. I know I should get over it, but people can be rude to anyone in a wheelchair, let alone someone who "should be healthy."

I know that since it would improve my health and trip, I should do it - but it's hard to agree to. So... talk to me.

 

[Chuck S]

Well, I'd use a wheelchair, or ECV, if I was in pain. In fact , I considered it seriously last November, but I managed OK with prescription pain drugs. Fortunately, my disability was mostly temporary. (Rattlesnake bite) But, I do push my Mom in a chair at Disney, she's had 3 surgeries on the same hip.

Personally, I wouldn't care what other people...people I'll probably never see again...think. And I wouldn't let it ruin my vacation, if I needed wheels to get around, I'd use 'em.

 

[Luv Bunnies]

My dad felt the same way about using an ECV last summer at Disneyland. He's 83, has had heart surgery, is diabetic and always has sore legs. We really wanted him to come on the trip but he knew he couldn't do all the walking. When we first mentioned an ECV, he said, "No way!" As the trip got closer, my boys started asking if Grandma and Grandpa were coming. Finally, my dad relented and let me rent him an ECV from an off-site company. He was able to ride it to the front gates from our hotel and into the parks. And he loved it! He couldn't believe how good it felt to go to the parks with his grandkids without worrying about walking too much.

You deserve to enjoy yourself and if it takes a wheelchair to make the trip, by all means use one. And don't worry about people thinking you "should be healthy." Not all disabilities are immediately visible and furthermore, it's no one else's business why you need a wheelchair. My son is 13 and very tall and has Asperger's Syndrome. He "looks" like he should act more mature than he does. When he acts inappropriately and people shoot us a look, we don't worry about it. They can't possibly know what's going on and we're not obligated to tell everyone we run into.

I hope you have a wonderful trip!!!!!

 

[goofieslonglostsis]

It's plain and simple. Do you want to have fun? Offcourse you do! For which you'll need a set of wheels, as you said. So, go ahead and use them! Scr*w what others think! They'll be thinking something anyway, whether you walk or roll.

One thing though, do you have experience with selfpropelling a chair? You have experience in how much distance you can cover while at WDW and if you've got no experience with selfpropelling it can be very hard (even WITH experience). Selfpropelling asks other stuff of your body, movements most aren't used to. Combine that with the fact there are enough 'sneaky' obstacles at WDW. (like Mainstreet not being flat but slowly rising, bridges, the stones at AK etc.) I'm wondering if an ECV isn't more fitting, especially with MD. But than again; nobody can judge that more than you.

How to deal with the looks and comments? I use the "I am more important than others"-strategy. I am more important and therefor too focussed on what I am doing, wanting to do, well you get the drill. If I'm focussed enough on myself I really do not notice looks or comments (have had others tell me about incidents that I really never noticed myself).

And sure, if you'll have a bad day, you'll notice those more quickly and they'll hurt easier. But don't let that beat you. Depending on my mood I either give them a rather nasty look (and believe me, it can scare people like nothing else ), make a humoristic remark or go all the way out on sarcasm. You know, the just 'a bit too loud' saying how you feel soooooooo bad for all of those folks standing and how great it is to need a chair and be able to sit down. Going overboard not only is fun for me and those in my party but it tends to get the point across quite a few times.

Additude sure can do a lot. I do get more comments and looks if I have a 'off day' myself. Not only what I notice myself (as stated, than can become faded at times), but also what friends and family notice when being out and about with me.

Let's face it; you'll have to go through your first time using a wheelchair one day. Why not make it at WDW? What better place than to do it there? Think about all of the saved energy and how much fun that can give you?

I think I don't look abnormal, to be honest. Just another person that happens to use wheels. Well ok, I'm rather diva-like when it comes to the esthetics of the chair and sit in it like a queen, but I look normall besides that. It's not like I'm missing bodyparts, have some extra, got green skin or anything. I wear enough splints but they look like jewelry (adding to the divalook ). I happen to be a fulltime chair user, using either a manual or powerchair. Was a parttime user one day though. And really; no chairuser has to look like they are one to be allowed to use a chair. You only have to look like the person you are. If others have a problem with that; it's theirs and not yours.

Seriously; keep a diary or something for yourself. Note down all the positive effects the chair will have for you. If looks or comments ever get you down and you need a little help, re-reading this list can be just that little extra you need to not let them get you down. Look around and see all the others with some kind of aid. All people having fun. You are not alone. They can do it and so can you.

When in december will you be there? I'll be there the first 2 weeks. If things do get too challenging, I'ld be happy to help out if I can.

 

[Cheshire Figment]

Hi and to disABILITIES!

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!

And unless you are used to wheeling, you should consider an ECV not a wheelchair. Check Post #2 and #3 of the disABILTIES FAQs for more information.

 

[WheeledTraveler]

I'm going to suggest looking at an ECV instead of a wheelchair. I'm not sure what sort of MD you have, but especially if you have any sort of fatigue issues, pushing yourself in a manual wheelchair around the parks is going to be hard or impossible. And you certainly aren't going to want to be dependent on someone else pushing you. I'm pretty close to a full time manual wheelchair user in an ultralightweight, made-for-me custom chair and I wouldn't do WDW in my manual wheelchair these days because there's no way my shoulders would survive. I don't have MD (to our knowledge), but part of my problems are probably a neuromuscular disorder so I can relate to muscle fatigue and weakness problems.

I like Cheshire Figament's list of questions and I think it's a good thing to remember. I know I look "normal" in my wheelchair or using my ECV, but so do most people I know who use wheelchairs. The people in the parks aren't people who will see you again and any family or friends who you might be with should be understanding enough to not care if you need the extra help to have fun. And that's really what it should be about, doing what you need to have fun.

Another way to look at it is that a wheelchair is just a tool. If you needed glasses, you'd get them, right? And I'm sure most people you know use cars to get places. Technically as a human you can survive without either aid, but lots of people use them because they make their lives better, easier, and/or more fun.

Good luck!

 

[bsmcneil]

I should've mentioned that I meant ECV. I know that I can't do a self-propel (because of the MD/my arms). My partner has offered to push me - but I know how that can tire us both out. I appreciate these words. I know the smartest/best thing - it can be difficult to hear them though. Thanks.

 

[LindaBabe]

GO for the ECV. You will BLESS the day you overcame your concerns! An ecv will give you independence. I HATE to be pushed, although my dh loves it, lol.

I also like a 'disarming' sign on the front of my ecv, preferring to make people laugh rather than grumble. Mine says "My Coach is in the shop" with a picture of Cinderella's coach.

That might not be your preference, but yours could be something like "My other vehicle is a pick up truck" with clip art from CARS or a monster truck, or some such thing. I put my sign in a sheet protector and twist-tie it to the basket.

 

[honugirl]

I'm close to your age, I'm 30, so I know how you feel about having to use an ECV to get around. I have a pituitary tumor and a rare disease called Cushing's Disease, which causes muscle weakness and fatigue. I used an ECV on my last trip there in September. What a difference that made! Holy cow! For once I was the girl who could instead of the girl who can't! I saw and did the things that I wanted to do and see. I made it through a whole day in the parks each day. It was awesome! As I look forward to my trip next year, I know that an ECV is in my plans. It's just part of who I am now. Yes, I worried what people thought about seeing a "healthy" 30 year old in my ECV. People see what they want to see. Screw 'em. Go enjoy yourself! I did and wouldn't think twice about doing it again.

 

[mechurchlady]

I should've mentioned that I meant ECV. I know that I can't do a self-propel (because of the MD/my arms). My partner has offered to push me - but I know how that can tire us both out. I appreciate these words. I know the smartest/best thing - it can be difficult to hear them though. Thanks.

There are places that you may want to go such as shopping. It is easier for you and him to use the ECV. He can go on some rides while you are in the cool stores shopping. Did I mention that I love to shop?

People stare or make comments for various reasons. Some like me stare because our eyes or brain do not comprehend what we are seeing. Some might stare at something new that they could tell her friends about like a new type of chair. I find you can talk to the person and explain, you can go on about your life while ignoring them or you can run them down and yell at them. I find that most people are just curious or not accustomed to seeing something. You might help someone who has or know someone with MS. I am teaching people about allergies and quirks of mine so you can too educate people and help them get help.

Then there are the rude people. When they are done staring and harping about you then they go stare and harp about gays, religously dressed people, people of other races, fat ladies, anorexic people, dwarves, ladies in spandex, men with their pants hanging low, omg the make up on that woman, smokers, spitters, children, parents, the weather, CMs and anything else that gets in their way. The rude people put everything down and you cannot do anything other than ignore, educate or insult.

Enjoy your freedom in the ECV, have fun with the boyfriend and try things yo never tried before like new foods and sounds. WDW is a fun place unless you let yourself worry about what others will think about you. Who cares if they do not like your make up, jewelry, clothing, GAC, shoes, hair do, or disability. Have fun and enjoy yourself.

 

[chunkygal]

I just got back. I have a temporary problem...broken ankle, crutches and used and ECV.
No one said anything and I had no rude looks or comments. I felt self concious, but the truth is people who are there are thinking about THEIR vacation, THEIR family and are not focusing on you. I had a great time and it was much easier on my family. I was not pushy nor did I expect special treatment. I just had a good time like I always do, on an ecv and crutches which i will only do this time I hope

 

[justtobeme2]

I'm going in Jan and for the first time renting a ECV. I have among other things achillies tendonitis that makes walking very painful. I could probably walk with lots of sitting time but I like what one other poster said "why just survive WDW when you can enjoy it". I am 46 and I look healthy but overweight but I also have had 3 back surgeries. Anyway when my LTBF (long term boyfriend who is 39 and healthy as a horse) learned I was getting a ECV instead of funny looks he said "great I am getting one too"...haha...he's serious, he said he didn't want to have to try to keep up with me riding so he is going to get one too. Now, some people might give hiim "the look" too but he honestly could care less. I'm so thankful for that. Actually I think oftentime the "look" is given by people who are hurting and wished they would have gotten a ECV. They are thinking "if I can suffer so can they"...well that's their choice not mine this time!

The only people I worry about are the bus drivers I heard will sometimes pass you up.

 

[honugirl]

That's great that he's so accepting. Just be aware and plan well because each bus holds a maximum of 2 wheelchairs/ECV's so if there's already one waiting, you're stuck waiting for the next bus unless you want to split up and go separately. Make sure you have tons of time to get places.

Honestly, if you don't need one for a medical reason, they really are kind of a pain in the rear. Especially on Main Street and other crowded places. When I was there in September, my LTBF could go places much easier than I could.

It's nice to get a break with one and it was a god send for me, but honestly, if I didn't have to use it, I'd rather walk... just my two cents. Take it for what it's worth.

 

[AJKMOM]

Just my $.02, but if you need an ECV, then get one. Why should you care what people think when you don't know them, they don't know you or your circumstances.

DH has lupus and rheumatoid arthritis, but won't consider a rental wheelchair. So, when he's tired, he goes back to the room, and we go on without him.

This works for us because we go every year, we are DVC members, since we have an autistic son who gets better every time. With him, I usually wear a shirt from the annual autism walk, so people can understand if he acts up.

If we only went as a "trip of a lifetime", you better believe DH would get a wheelchair, or else he would just miss the fun.

 

[DisneyMim]

Here's my opinion. I also "look normal", but I have fibromyalgia and am in constant pain. I haven't had to use a wheelchair yet, but I would not hesitate at all to use one if I needed it. Being with my family and all of us enjoying our vacation is my top concern. I think you should look at it that way too. Don't worry about what anyone else says, they don't know you and how you feel. If using a ECV is going to help you enjoy your vacation then you should absolutely use one. Life if too short. Go and have a good time and do anything you have to to ensure that you will be able to really enjoy yourself. You don't want to tire yourself out and then not be able to go to the parks. There, you said you needed a talking to!!!

Enjoy the Magic!!!

 

[snapper422]

Adjusting to the requirement of a wheelchair or ECV is sometimes difficult at first. But once you realize the freedom it returns to you the adjustment comes quickly. I struggled walking at Disney, "managing" my pain through two visits. Then I tried an ECV. What a difference! It brought the fun back!
I am now about a 95% power wheelchair user. Better in my opinion due to being more confortable and more maniverable (sp).

The "problem" with ECV's at Disney is that too many think they are empowered to run wild, which causes all sorts of problems. Just take it easy and remember you have no more right away than the walkers and you'll do fine.

Snapper

 

[justtobeme2]

That's great that he's so accepting. Just be aware and plan well because each bus holds a maximum of 2 wheelchairs/ECV's so if there's already one waiting, you're stuck waiting for the next bus unless you want to split up and go separately. Make sure you have tons of time to get places.

Honestly, if you don't need one for a medical reason, they really are kind of a pain in the rear. Especially on Main Street and other crowded places. When I was there in September, my LTBF could go places much easier than I could.

It's nice to get a break with one and it was a god send for me, but honestly, if I didn't have to use it, I'd rather walk... just my two cents. Take it for what it's worth.

You know I have a feeling he will most likely not use it much because of that BUT he is paying for the trip and he wants one (he is crazy) so I reserved one for him. I know we might have to wait and be seperated and that's OK with me, not sure about him though..lol...I do appreciate the fact that he doesn't have any issue with it. Honestly, I think he thinks that I could/would just speed off and leave him to try to run to keep up. I explained to him that it's crowded and not very easy to manuver through the people but he says he wants one..what can I say. I ask him every day "are you sure you still want a scooter?" and he says yes.

One other thing, my little nephew just got back from disney and we were talking about scooters and my nephew said "that's awesome cause when I was there I got the worst fever blister on my foot I ever had"... I asked him if he had been sucking his toes but he didn't understand the joke. Anyway this confirmed my LTBF on getting a scoot.

 

[RNMOM]

Hey, I just got back yesterday and didn't feel there was anyone giving me the "evil eye". The crowds were very heavy and a lot of us on scooters of all types and wheelchairs. The only looks I got were from those people pushing others in wheelchairs...I think they wished they could talk them into driving their own scooters!

 

[bopper]

Here are top 5 Reasons that people think they shouldn't get one when they should.

I can't drive one. Go to your local Costco/Walmart/Target or other large store. They probably have an electric cart type thing that you could use while shopping. Try it out. I bet you can drive it.

People might think I don't really need it because I can walk. Are these people going to share the pain with you at the end of the day? Do you care what they think? Save your walking energy between rides and use it for lines or getting on the rides. Enjoy your family and your vacation.

It will slow my family down. No, actually it will speed your family up. No more rests because grandma is tired. No more going back to the hotel because grandpa is in pain. No more cranky mommy because she tried to walk miles and miles in Disney instead of renting an ECV. You are completely mobile on your own (nobody pushing you in a wheelchair). What's the slow down here?

It's expensive. Um, how much are you spending on this vacation? Don't you want to enjoy it? If money is that tight, take a day off of your trip and spend that money on the ECV so you can enjoy it!

I don't want my kids/family to think I am disabled. You are either temporarily or permanently disabled in some way if you are even asking about this issue...once again, why not make it a better vacation by saving yourself from pain? Nobody is saying you have to confine yourself to a wheelchair permanently or you should not stop trying to get better. If somebody told you to go walk 4 miles, you would think they are crazy. But you are paying for the privilige when you go to Disney to do just that...why not use an ECV to make your family's vacation better?