Tip for fellow "invisible disability" DISers

[Piper]

Here is the ECV cover. I used 300 crystals on the Mickeys. I hope I don't blind anyone in the summer sun!

I still need to press the seams, but I'm waiting until tomorrow so the paint will be good and dry!

Now I have a Glitzy Mickeymobile!!

 

[Earstou]

You did a good job, Piper. That is really cute!

 

[SueM in MN]

You did a good job, Piper. That is really cute!

Yep, very nice!

 

[ntsammy5]

Neat cover. You should make some more and sell them on ebay!

 

[dinghydeb]

Your scooter cover is awesome great job!

 

[Ctsplaysinrain]

I'm sorry that all of you in ECV's and WC's have to deal with rude people.. And I know that it must get tiresome and you probably get on the defensive as well.. BUT, please try and remember the other invisible disabilities as well..( although I'm sure no one here would do this0).. But, we had this awful experience last summer.. My 11 yr old ds with Asperger's was busy "in his own little world" looking at something in one of the Future World buildings- flashing lights on a wall or something.. He had his headphones on ( big construction worker type- not ipod ones), was busy stimming away when this lady on an ECV approached him.. I was watching this from about 10 ft away. She could have gone around him too.. I saw that she started beeping her horn and clearing her throat. He was oblivious. I saw her loose patience- I think she assumed that he was just being a rude teen. I literally could almost see the smoke coming out of he ears and then I noticed that she started up and looked like to me that she was intentionally going to run into him. I swear it seemed like she was "reving" the thing up. I got over there and pushed him out of the way. Then, I normally do not say anything but I calmly looked at her and said "He's autistic- give him a break." She then gave us the middle finger and rolled away.

 

[kimbac3]

Great job Piper!! Love the cover!!

Kimba

 

[merryweather20]

I'm sorry that all of you in ECV's and WC's have to deal with rude people.. And I know that it must get tiresome and you probably get on the defensive as well.. BUT, please try and remember the other invisible disabilities as well..( although I'm sure no one here would do this0).. But, we had this awful experience last summer.. My 11 yr old ds with Asperger's was busy "in his own little world" looking at something in one of the Future World buildings- flashing lights on a wall or something.. He had his headphones on ( big construction worker type- not ipod ones), was busy stimming away when this lady on an ECV approached him.. I was watching this from about 10 ft away. She could have gone around him too.. I saw that she started beeping her horn and clearing her throat. He was oblivious. I saw her loose patience- I think she assumed that he was just being a rude teen. I literally could almost see the smoke coming out of he ears and then I noticed that she started up and looked like to me that she was intentionally going to run into him. I swear it seemed like she was "reving" the thing up. I got over there and pushed him out of the way. Then, I normally do not say anything but I calmly looked at her and said "He's autistic- give him a break." She then gave us the middle finger and rolled away.

But, see this person would have been rude with or without the ECV. In fact I bet they were the same person who was resting their feet on the other posters wheels earlier on in the post (in their pre ECV days)

On the upside she was probably at eye-level with all of us all day so we probably got a break from her that day

Cannot get over them making such a gesture, especially in front of a child

 

[Piper]

Thanks for the compliments on the ECV cover. It was really easy to do. The hardest part was putting all those tiny crystals on it with arthritic fingers! I just kept telling myself, "This is good PT!"

 

[OneLittleSpark]

Piper, I love that cover! It's brilliantly done!! I think even the most ignorant people would have a hard job ignoring you with that!

Ctsplaysinrain, I'm so sorry you had such a rough experience. Unfortunately, having a disability does not seem to teach everyone the virtues of patience and compassion. I hope it didn't spoil the holiday for you and your family.

To all who need to use chairs or ECVs, I have a tip for you: learn to scream! OK, hear me out on this one! I know a lot of us here use assistances for conditions that are aggravated by being knocked, bumped or shoved. However I know, in my case at least, that it is sometimes hard to find your voice immediately, or that it can take a moment between being bumped and the pain fully kicking in. Therefore, I have learnt to scream, very loudly, as soon as anyone bumps or kicks me, even if the pain hasn't yet reached full level, because I know for a fact that it will in a second. I've used this a number of times, and it usually makes people around you a lot more careful. Now don't get me wrong, I don't expect you to all go and cuss at anyone who comes within ten feet of you, but if someone has caused you pain through their own carelessness, I see nothing wrong with letting them know. Also, I know that accidents happen, and people are unlikely to hit you intentionally. However, almost every time I've been hit, it has been because the person has got far too close to me (even though there's usually enough room to get around me without hitting me) or, in some cases, has literally climbed across my footplates! You may feel a little embarrassed about screaming at first, but trust me, it makes more of an impact than a gentle "excuse me, you just hit me about the head with your bag. It was jolly painful and I'd be most obliged if you refrain from doing so again"!

 

[SueM in MN]

I saw her loose patience- I think she assumed that he was just being a rude teen. I literally could almost see the smoke coming out of he ears and then I noticed that she started up and looked like to me that she was intentionally going to run into him. I swear it seemed like she was "reving" the thing up. I got over there and pushed him out of the way. Then, I normally do not say anything but I calmly looked at her and said "He's autistic- give him a break." She then gave us the middle finger and rolled away.

I think, as someone else said, that woman would have been rude with or without the ECV. There are people driving cars who speed, beep at you if you are not also speeding, pass in no passing zones, etc, etc. When that person uses an ECV, they behave the same way with their 'new vehicle' as they did using their car.

I don't think anyone means to make it sound like the only people with invisible disabilities are those using wheelchairs and ECVs. We need to be aware with anyone that things maybe are not what they appear to be. Even if your DS had been a 'rude teenager', that would not give someone else the right to behave rudely toward him.

 

[Ctsplaysinrain]

Yes, I do realize that the lady was probabaly just a "rude person." And I did not imply that anyone here would do such a thing.. BUT, I can see how someone who was in an ECV and had to "deal with jerks" all day may have just reached the last straw and we unfortunately happened to be in the wrong place at the wrong time.. At least, this is how I tried to "justify" it to myself since honestly I was just flabbergasted. I guess a similar feeling to the OP and the kids on the boat kicking her. BTW, Has anyone ever checked out here- THere are all sorts of cute bumper stickers, t-shirts etc for many different conditions.

http://www.cafepress.com/buy/ra/rheumatoid+arthritis

 

[mechurchlady]

The Autism one was a good one I would like to give some people here. I so wanted the celiac ones but doubt I will buy one. There are two types of people in my life. Those who know I have mental and physical problems and work with me and care about me and help me. then there are those mean people who cannot get it through their head that I CANNOT do something.

I want the celiac one and some of the hidden disability ones.
Very nice link, thanks, wish i had the nerve and money for them.

 

[OneLittleSpark]

Thanks for the link! I've been there before, but either I missed some, or they've added some since my last visit. They're all great, but I particularly love the "My disease may be invisible, but I'm not!", and the "Today's flare is sponsored by FMS" designs!

 

[kimbac3]

I liked the one that says "I'm not lazy I'm in pain"

I just may buy that one!!

Kimba

 

[ireland_nicole]

Piper: too cute! I have to try one, but I don't think it would come out as cool as yours.
Ctsplaysinrain(?); I'm appalled as well that you and your son had this experience. I'm pleased that you didn't allow this woman's true disability;i.e. anger issues, and a really unpleasant personality to ruin your vacation.

Thanks for the link, ya'll. I have to get me some of those t-shirts!

Nicole

 

[GrowingUpDisney]

I am not disabled and do not have children with disabilities (although when my boys were born we thought one of them would have CP...Thank God he does not!), but my neices are albino and it amazes me how many people are rude to them. As you may or may not know, the disease causes their eyes to wander back and forth. I have heard many children or adults ask "what's wrong with their eyes" or "why does their eyes do that?". Children - I can understand asking questions because they don't know. However, adults need to be a bit more tactful about their questions. Also, unless you are close enough to see that their eyes do this, other than their WHITE hair and skin, they look like normal children. When we go to Disney, we do get stares when we are allowed to the front of the line (for shows or for rides like Dumbo that are in the sun). People don't understand and are very rude.

I just want to say that I know all of you would gladly wait in line or give up that chair to be able to walk around like the rest of us. I want to thank those of you who are patient enough to answer the questions of smaller children and don't take offense. I also want to say that I am so glad you are able to enjoy Disney World as it accomadates ALL people. God bless you all and your families!

 

[Leonsmom]

Hi, I am 39yo and have FMS and two herniated discs in my back and 2 bulging discs in my neck. I just started planning my trip for Dec (a birthday celebration for my DS). I am really excited about it but also worried about flare-up's due to too much standing and walking. At home I don't get too active but when I do. I always can lay down or just sit, and if it is really bad I know that I have next few days to recoup. At WDW I can't afford to lose a few days due to a flare-up. I just know my body and I know that if I don't take it easy, I won't be able to walk after the first day. So I was thinking of renting an ECV or Wheelchair. The thing is I also don't want to be stuck to a chair the WHOLE time either. I want to be able to walk onto a ride when I feel good, or even skip along with my DS when he's excited to go see Mickey for the first time. I have been hesitant to even rent something because of what people will "think". Now after reading this thread I am afraid of what people might say or do.
For me renting a chair/ECV (probably the latter so DH doesn't have to push) is more preventative than anything. So now I am really torn. Do I get one so that I definatly don't get a flare-up or do I wait and take a chance and see if maybe I won't get one at all or risk getting one that will have me in pain for the rest of the trip?

 

[Cheshire Figment]

Please ask 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!

There is no rule that says you must remain in the ECV at all times. I will sometimes park mine, being sure to take the key out and remove anything from the basket that I do not want to take a chance on losing.

And, as far as comments people may make, either ignore them or say <expletive deleted> to them. And I cannot visualize anybody "doing" something; I would get Security involved very quickly.

 

[ireland_nicole]

O.K. Good questions. And I have put a lot into the answer...
Get An ECV!!!!!!
There are other threads and stickys about this, so you'll get a lot of info from those.
But at the end of the day,
1. you don't use an ECV and risk ruining your entire vacation because you are in too much pain to enjoy it. or...
2. you use and ECV when you need it, and yeah, you might get a comment or two(make sure to read the quips). But does it really matter? You are there to enjoy a vacation in the Happiest Place on Earth with your family! Will protecting your health make it possible for you to do that? YES!!!

Please don't risk your vacation because of something some ignorant ape might say...you won't get to share this trip w/ your son again, and when he is older, the experience will be completely different. Oh, by the way; you can use your ECV/Wheelchair to get to an area of the park i.e. fantasyland, and then walk around that area. Then just get your ECV/Wheelchair and continue to the next area.

Whatever you decide-Have a magical trip
Nicole