"invisible" disability

[jwmoss]

I have a blood disorder (it's a myeloproliferative neoplasm called essential thrombocythemia) that causes awful fatigue. I take old school chemo pills to control my platelets so I don't have a stroke, and this medication causes extreme fatigue. Due to some other health issues, I am battling anemia right now, which also causes fatigue. I really want to rent an evc for our upcoming Disney vacation, but am dreading the whispers and dirty looks from strangers since I appear perfectly healthy. I had an evc last year due to a torn tendon in my foot and I was blown away by how much more energy I had each morning since I wasn't doing all that much walking. Usually by day 3 I am barely able to get out of bed and the evc changed that. I know I shouldn't care what other people say or think, but it's hard not to.

 

[gwynne]

Anyone who would whisper or give dirty looks is an unpleasant busy-body. Who cares what they think?
I think most will be paying attention to their own vacations. Do what works best for you to have a great time. Saving your energy is a smart move. It sounds like the evc would be a great solution. Here's wishing you a wonderful WDW visit.

 

[3Gsandme]

I'm going to give you a nickel's worth of free advice OP. Seriously, who cares what other people think. Your life is none of their business. Your health is none of their business. It's none of their business if you have a "legitimate need" for an ECV or if you have one because you like your pedicure and you don't want to chip your nail polish. You do what you need to do to have a great trip and anyone who bgies you the side eye for it is a jerk and who cares what a jerk thinks anyhw.

 

[Allison]

I have to agree with others. Why make your trip more difficult because you are worried about what a stranger who you will never see again thinks? They are simply misinformed.

 

[gap2368]

yes who care what other people think I think you should rent an ECV and go on with your vacation and have a great time be able to enjoy the parks for longer then you would have and if someone gives you a dirty look give them a dirty look right back at them and the smile as you ride away

 

[TheRustyScupper]

I know I shouldn't care what other people say or think

1) You WILL get a few nasty looks and bad phrases.
2) Just let comments roll off your back.

 

[tinkerpea]

As a 30yr old who looks around 23 and who has battled chronic illness and a brain tumour since 2007 I completely understand, I get awful filthy looks For having a blue badge ( disabled car badge) I've learned to deal with it, but when in Disney and I use a DAS or have an ecv the looks I get and actual people saying why do you need one, was horrid.
Then my husband told me to focus on having fun and I wouldn't notice them. And he was right.

 

[mamabunny]

99% of people using ECV's at WDW have "hidden disabilities"; you can't tell just by looking at them why they use an ECV.

Think of it like this - the ECV is a TOOL, and nothing more. The eyeglasses that I use? A tool - to help me see better. I'll bet you have used a calculator at least once in your life... that is a TOOL to help with math. (I stink at math, so I always have a calculator handy). These are all tools that people use every day. So, an ECV is also a tool for humans who have trouble walking/standing. It's about using the tools that are available - and appropriate - to make the most of your time at Disney World.

You aren't using the ECV in any way that is inappropriate. You have a legitimate need.

I promise you - you may be feeling very sensitive about using an ECV at WDW, and you may think that folks are upset/glaring at you/making remarks. A few might, but overall, people are increasingly so very self-absorbed at WDW that you on an ECV is simply a non-event. In fact, you will need to watch out while driving your ECV! People at WDW (and everywhere, really - let's be honest) are often so self-absorbed in their phones, conversations, surroundings, etc. that they will WALK RIGHT IN FRONT OF YOU. While you are moving! Mostly when they aren't busy running INTO you, or BUMPING you. It happens on a startlingly regular basis. Your most effective "weapon" is a bright smile, and a pleasant "Pardon me!". Just remember that it is NOT intentional - they just aren't paying attention to their surroundings. Just try not to run over them if possible LOL!

We were just at the parks in February of this year. At that time, strollers outnumbered ECVs by a fair bit, and our daughter (whose 21st birthday we were celebrating) noticed that it was just "easier" to use the ECV at the parks. People seemed MUCH more accepting of it, and even more helpful at times (holding doors, etc.) It was, overall, the easiest trip I ever had using an ECV.

So my advice to you? Get on that ECV and ride. Smile & wave at everyone, and make eye contact. Don't worry about what anyone else thinks; the chances that you will see ANYONE from Disney World outside of your trip ever again? You have better odds betting on the lottery. You stand a better chance of getting struck by lightning! Your odds of winning the lottery AND get struck by lightning in the same day are better! You will NEVER see those people at Disney World again, in all likelihood. So don't worry about them. They are all too busy worrying about themselves, and taking "selfies" and posting pictures of their lunch on Instagram anyway.

Have fun, and may you have the most Magical trip yet!

 

[seashoreCM]

... the ECV is a TOOL, and nothing more. The eyeglasses that I use? A tool ...

Another wacky T-shirt idea from me (this one will probably need some critiquing and then refining).
"Your math seems better. I need this (picture of calculator) You seem to walk better. I sometimes need this (picture of wheelchair)"

 

[scdak]

Don't worry about what people think, don't worry about the looks, and ignore what might be said about you that they think you won't hear........no one should care why you are using an ECV! Its no one's business but yours, and you have to do what is best for you! I walk with a hiking stick when I am at the parks or doing any prolonged walking simply because it allows me to enjoy my life more, I have had the looks, the snarky comments made etc like "she is just fat, look at her".........umm, no, I have a back that is so arthritic that its impossible to walk for long, I have a spinal canal so stenosed (small/narrow) that the last MRI that I had showed it was bascially immeasurable which was interpreted to me by my neurosurgeon as less than 1/4 the normal diameter but to look at me I look like a normal middle aged woman who happens to be pooh sized (260#), I walk or ride my stationary bike daily, I work 12 hour days and I just adapt and adjust what I need to do in order to accomplish things! If I have to sit for 2-3 minutes every 30 minutes when I am at the park, I do so, if I need to sit longer I do so........heck, people watching is a favorite past time for me - not to be mean or critical about people but to enjoy everyone having a great time on their vacation! Use the ECV and have a great vacation!

 

[POOHsie]

I think your anxiety about what strangers might think -- is more intense than what you'll actually experience at WDW in person. Your worry about a whisper campaign in your midst might be eased when people you didn't notice in your periphery actually step forward to open a door, personally wave or smile at you, give you a 'hello,' or try to make you smile in some unexpected way. Wear your biggest smile, look for the best in people, and focus on everybody's fun. Losers whine about everything within eyesight -- not just the mobility-impaired. Remember that -- and stick with the winners. Enjoy your trip to the max.

 

[nikkislaght]

look at it this way.. strangers , their opinion of you is none of your business.. and therefore shouldnt influence your joy...
family . their opinion matters but only as to if you are wearing socks with sandals.
YOU.. your life. your health and your joy is the only thing that matters.. and if you need an aide then use it , a sit up tall while doing so..
Hope you have a great trip..

 

[Goddesstree]

At the World right now, and I've seen a lot of scooters and wheelchairs, and heard no nasty comments around me at all. Of course, if I did, they'd be getting an earful from me Very pleased to say that the ECV users are being very careful - maybe more people are practicing before they get to the parks as scooters become more commonplace? Bus drivers are very good at getting people on and off the buses too

 

[ttintagel]

In my entire time using an ECV at WDW, I've heard a total of ONE untoward comment from another guest, and in the moment it was so ridiculous that my honest reaction was just to laugh. There is so much to see and do at the parks that both you and other guests aren't going to have as much time as you think to worry about it once your trip gets underway. And, as others have pointed out, the difference between enjoying your trip and being too exhausted to enjoy it will more than make up for anyone else's ridiculous behavior.

 

[NeverSayNever]

Not the OP, but thank you all for your comments as they are helping me as I wrestle with getting an Ecv for our upcoming Disney Cruise and short stay at WDW.

I have some mobility issues and a bad back, I have used an Ecv before at The World and honestly it salvaged our vacation. This will be the first time planning on having one on the ship. Partially because last year on our cruise my back went out completely and I was unable to move much and couldn't walk. Our trip was saved by guest services who had a wheelchair to loan me for the week. So this year planning to rent one in advance and use as needed, I am trying to view it as an insurance policy, but I certainly like the concept of it as a tool.

Again thanks!

 

[andiraye]

I can't imagine anyone giving anyone dirty looks for riding in an ECV. Especially at Disney World, the distances are so great that lots of people who don't need assistance with mobility in real life need assistance. So I would think if people thought about it at all they'd chalk it up to that fact.

I would also say that everyone around you is going to be focusing on their own vacation, their own crying kids, their own best table for lunch, etc. I bet very few people will think about your ECV at all.

And beyond that, I agree with every PP - ignore any looks. It's none of their business and if for some reason they get in a huff because you ride an ECV and then walk into a ride.... That's a reflection of their bad character, not yours.

 

[Luv Bunnies]

The only time ECV users bother me is if they use them in a rude or unsafe manner. But then again, some people walk in a rude and unsafe manner too! Seriously, I would never question why someone needs to ride instead of walk. If they use the ECV in a responsible manner, they don't affect my trip or my opinion of them at all.

 

[disneyygirrl]

I understand where you are coming from and what you are feeling, to an extent, anyway. I have a heart condition that tires me out and a condition known as RSD, which causes extreme pain/swelling in my lower extremities. My brother and I leave in two weeks for Disney and this will be my first trip with an ECV (I have used wheelchairs sparingly in the past, but my conditions are newer). I was initially very nervous and not wanting to rent an ECV. That is, until I read through these boards! I want to enjoy my trip as much as possible, and I bet you do, too! I think everyone is so hyper-focused on their ADRs, FP+, and their own families that they'll barely notice you! I say just smile and enjoy your vacation to the happiest place on Earth! If anyone stares, just smile and wave!

 

[TheDisneyDoll]

You do whatever it takes to make your trip more enjoyable. Society has put this awful stigma on people with disabilities that if they are laughing or having a good time they must be just fine. I have breathing problems and I had to use a cart once a Walmart and I had someone make a back handed comment that I was having to much fun riding around the store. In reality for someone who is generally healthy enough to walk it is embarrassing to use a cart (especially your first time), but it is worth not having the exhaustion afterwards.
Sick people can be sick and still happy

 

[jwmoss]

Thank you all so much. You have each made me feel more confident in my decision. I think the place I worry about the most is the bus stops, but like someone mentioned, the bus drivers are so awesome with helping that last trip with the torn tendon and the evc, I was usually loaded up in less than 3 minutes. I sincerely appreciate all the kind words and pray that you all have a great week!