please help me show my wife she wont' get flamed for using an EVC

[mcco5543]

Dear Dis'ers,
My wife was a star softball catcher for 10 years in elementary and H.S. she had to quit because she has no cartilidge in her knees left and her Dr. told her she'd be a wheelchair user within 2 years if she didn't quit playing. He also told her that he wants her to take care of her knees and hold off on knee replacements as long as possible since you can only replace your knees so many times and she's only 28 years old.
We are going on our Disneymoon in July. I told her if we need to we'd rent an ECV for her to get around and save her knees (and excruciating pain...no point in that on your disneymoon!)
She refuses to do it because of all the "flame" posts she has seen here on the boards complaining about people who rent EVC's and don't really "need" them. And she doesn't want anyone to think that about her!

Well I told my wife that lots of people might make judgements about why she's in an EVC (she's not a stick figure), but that people who are familiar with medical issues and disabilities will realize that some disbailities can't be seen and there are a million of those types of disabilities out there and would never judge her or give her nasty looks or remarks.

Can you please weigh in and help me tell her to ignore those people who don't realize that hidden disabilities/medical issues can require EVC assistance and that she should ignore them.

p.s. I should add, i'm a wheelchair user (paralyzed waist down from birth and It's still not helping her feel better).

I know you Dis'ers are great at encouragement and have eased our minds about many a Disney worry.
TIA!!

 

[quiltymom]

No, she won't get flamed for using an ECV! The people who get flamed are the ones who are irresponsible using them (i.e., running into people w/o caring, not knowing how they work or not looking where they're going, using them to "save" their feet for dancing that night and bragging about it...).

ECVs are there for people who need them to use them, just like strollers for kids. It's what you do with the wheeled vehicles that is important. I'm sure I'll get nasty looks when my DS9 will use the stroller from time to time (he'll be sharing it with DD7), but I'll also make sure that I don't run into people, and if I do upon accident, I'll apolgize.

Does this make sense?

 

[cupcake]

There are a a few people out there who for whatever reason think they can know what it's like to be me, sitting on a bench in pain and not enjoying my vacation. But my doing that is not going to enlighten them-- all it's going to do is ruin my trip. The ECV is a wonderful thing, and I am very happy that I made the decision to try it out, I certainly have never looked back. I am, btw, 40 and hop up and down from the EVC to go into shops, attractions, etc. I have extra bones in my feet which are undetectable unless you are looking at my feet, so I have a classic invisible issue. I can walk for short distances fine, though, so you would not know anything by appearances. The funny thing is that the # of judgmental people is a very, very small fraction, but I know that if you run into one, it can be upsetting. But I am not going to spend my vacation on a bench to appease someone who, like I said, is not going to become empathetic if I use an EVC. So go ahead and do whatever you need to do to have a great trip!!

Congrats on your upcoming wedding, and please tell your fiancee to get out there and have a great time!

Cupcake

 

[AJKMOM]

I have never seen "the look" that others talk about, and if I did, I would probably make a comment to anyone who had the nerve to question why I use a GAC with my autistic son. If someone uses an electric wheel chair, it's 99% certain that they need it.

Unfortunately, the 1% who cheat are the ones who ruin it for the others. If your wife needs an ECV, I hope she will use one and ignore the people who pass judgement on what they think they see. I hope you have a wonderful honeymoon at WDW.

 

[minkydog]

My 50yo DH suffers from a serious heart &lung disease. To look at him, you'd never know he is so sick. He tries his best to keep up with everyone else, but he needs a lot of rest. He'd rather just sit on a bench than ride around in a scooter and draw attention to himself!

We planned a big trip to WDW for the first week of January. This trip was my three children's whole Christmas. But DH was hospitalized over Christmas with pericarditis, a very painful and exhausting heart disease, and it looked like the trip was in jeopardy. His cardiologist did not want him to go, but I made DH promise he would use an ECV. It was his intention to just break that promise

Well, within the first 2hrs of our visit to MK, DH realized how much the ECV was helping him. He recognized how limited he was and that he could save his energy for enjoying stuff with the kids. We still had to take breaks, but the ECV saved the vacation.

Tell your DW to give it a try. No one will look at her funny. If they do, tell her to stick out her tongue. It's your vacation. Let strangers think whatever they want.

 

[SueM in MN]

If someone uses an electric wheel chair, it's 99% certain that they need it.

I'd just like to point out that electric (power) wheelchairs are different than ECVs (electric scooters). If you see someone with a power wheelchair, it's 100% that they need it, since you can't rent one of those unless you already use one (many people choose not to travel with theirs for fear of damage).

There are people who will look and/or comment; we've heard comments over the years about DD because people saw her sitting on a bench next to her wheelchair. She can't walk unless someone holds her up and can't transfer out of her wheelchair without assistance. That has not stopped some people from making their opinions known. But there is a very small number of those people. Doesn't keep it from hurting, but for every person who is mean, there are at least several nice people.

You and your family are the only ones who know how much you need the ECV and how miserable you would be without it. There might be a few people who are anxious to offer their opinion, but the only people whose opinions matter are yours.

 

[RNMOM]

I have used an ECV for my last 3 trips and have enjoyed those trips so much more than the previous ones when I was in pain.

I have bad knees, back, hands and ache all over from my connective tissue disease. I look fine, and yes, I am obese.

I own my own scooter now as well. I scoot around malls and our local shopping areas with my hubby and when people look at me I make a point of looking them in the eye and giving them a big smile and a "hello". It never fails to get a "hi" back and at least they recognize there is a person that goes along with this annoying contraption they might be asked to move a bit for. Just act like you own the world and be gracous. I always excuse myself if I scoot in front of someone, like I would if I had to walk in front of them. I am always careful of those around me and have not hit anyone but my poor husband on the heel.

No one can make you feel bad about something unless you allow them to. If you feel you need the assistance a device gives you then it should not be an issue to anyone else. Go. Have fun and save your knees for more important issues. There are some people who have nothing better in their lives to do than to judge other people. That is their problem. Not mine.

 

[mrsksomeday]

I hope she uses the ECV and has a wonderful time. It is going to be your Disneymoon. She needs to just focus on you and starting your new life together. It doesn't matter what other people think, especially other people that you are likely to never see again.

She needs to keep herself healthy for as long as she can, why be in pain on your Disneymoon? Tell her we all hope she doesn't worry about what others think and just enjoys herself.

 

[Cheshire Figment]

Please ask her 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 travelling 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!

 

[mommyseven]

I just returned from WDW after a week's stay. This was the first time that I used an ECV - ever. The bad comments that have been mentioned had me so worried that I didn't rent the ECV until the day before I left (rented it locally - was less expensive and a very nice ECV).

During the trip I was pleasantly surprised by how helpful and kind strangers were. Many times people would go out of their way to hold the door open. One night I was passing through Pleasure Island and ended up on the worse zig-zag ramp (I'm sure some know what I am talking about). The path was very crowded with people standing in line to get into a club. One gentleman went out of his way to move everyone to the side, which they gladly did.

The only less than friendly look that I got came from a lady at the bus stop leaving Epcot. I was trying to get to the handicap loading area so that the bus driver would see me and I could easily manuever the ecv onto the bus. She I suppose thought I was trying to cut so she purposedly stood in front of me and dropped her bag in the way. Well, the bus came and the driver pointed to me and flagged me forward. When she got on the bus she had a sour pus look but she probably is like that all the time.

That was the only negative experience. Yes. People do walk in your way and you learn quick how to stop fast and watch how people will react. They don't always mean anything by it because when I did a bit of walking they would walk in my way too. It was a bit frustrating when looking at the animals in AK because people would squeeze their way in front of me and the window. With me being down low it was harder to see, but then again they would have squeezed their way in anyway.

Tell her to rent it. I'm the most self-conscious, people aware type person. I know if people are looking at me and thinking things. I prefer to blend into the crowd and go unnotice. I'm not the star nor do I like any unwanted attention. If I can do it she can too.

 

[OneLittleSpark]

Some people find putting a jokey sign (like an L plate) on the back of the scooter relieves some of their tension. I know that's not something that everyone would go for, but some do find it helps. I'm thinking of making a couple of bumper stickers for my wheelchair before Disney, such as: "43 square miles of magic, and I'm the most exciting thing you can find to look at? I'm flattered!". All right, it's not really snappy, but it'd get the message across.

Wherever you go, whatever you do and whatever your abilities, you'll probably find some jerks. But what's more important: pleasing the jerks, or having a great trip? I say scoot away and have fun!

 

[KPeveler]

great bumper sticker idea, onelittlespark!

I hope she uses the ECV or whatever device is most helpful. I am only a little away from using a chair myself due to connective tissue disease, and I am 22. you would never know to look at me.

This is your honeymoon. The last thing you want to do is look back at the pictures, and have her say "wow, i hurt so much just to stand and take this picture."

I say to live your life and pooh on anyone who is so immature they feel the need to ignore disney world and stare at people who need an ECV!

 

[OneLittleSpark]

great bumper sticker idea, onelittlespark!

Thanks K!

I say to live your life and pooh on anyone who is so immature they feel the need to ignore disney world and stare at people who need an ECV!

Nicely put!

 

[mcco5543]

she Rented An ECV!!!



you Guys Are The Greatest!


Thankyou!!!

 

[Michigan]

"43 square miles of magic, and I'm the most exciting thing you can find to look at? I'm flattered!".

I have 2 daughters with spina bifida both paralyzed from the top of the legs down and I found the perfect shirt for my 9 year old the other day at Target. It says "Ok I'm perfect so now you can quit staring".

We've had some of our funniest moments from people staring at WDW. Like the time a guy had his head cranked all the way around and kept walking right into a poll. As we went by we said don't worry about all the people staring at you maybe one of them will entertain you like you did us.

 

[edcrbnsoul]

I'm glad she rented. My DW chose to "tough it out" one trip and then for the next she got the ECV, she was glad she did she enjoyed herself much more.
Remember those who complain about the ECV's are the vocal minority we never ran into nasty looks or comments.

 

[cmwade77]

she should get the ecv and enjoy, as stated earlier on here the people who do get flamed are the irresponsible ones.

 

[mcco5543]

I have 2 daughters with spina bifida both paralyzed from the top of the legs down and I found the perfect shirt for my 9 year old the other day at Target. It says "Ok I'm perfect so now you can quit staring".

We've had some of our funniest moments from people staring at WDW. Like the time a guy had his head cranked all the way around and kept walking right into a poll. As we went by we said don't worry about all the people staring at you maybe one of them will entertain you like you did us.

I have SB too! And I also have a million of those stories, in fact when I do my guest speaking shpeel about what it's like to live with a disability I always tell those stories to loosen everyone up and it always does!

 

[OneLittleSpark]

Yay! I'm so glad she's gone for the ECV, it will make your trip so much easier for both of you! Have a wonderful time, and ignore the gawkers!

 

[WildGrits]

Do you mean flamed here on the boards or going around WDW?

Cause trust me, the loud minority will complain about anything. One of my scouts older sisters has severe CP. She is in an electric wheel chair with a dyna-vox attached. The Loud Minority where just horrid when she was getting on the buses.

The lack of campassion is shamful.

Personally I find that behavior reminecent of pigs fighting to get to the trough.