Tip for fellow "invisible disability" DISers

[Matt'sMom]

To all who need to use chairs or ECVs, I have a tip for you: learn to scream... I've used this a number of times, and it usually makes people around you a lot more careful.

Yikes! We are traveling with a wheelchair user who is expressive aphasic.
Guess I am going to have to do the screaming for him.

Anyone have other (non-verbal) ideas of how to help make people more aware of his presence, and hopefully encourage them to respect his personal space? All we need is some idiot tripping over my dear father in his w/c, and then blaming him for not having spoken up.

 

[goofieslonglostsis]

Yikes! We are traveling with a wheelchair user who is expressive aphasic.
Guess I am going to have to do the screaming for him.

Anyone have other (non-verbal) ideas of how to help make people more aware of his presence, and hopefully encourage them to respect his personal space? All we need is some idiot tripping over my dear father in his w/c, and then blaming him for not having spoken up.

Be in their face, plane and simple. It is really silly, but if I'm in my manual chair that stands out (nice colour, even better fabric, some flashy lights) people will notice me a lot more and earlier than when I'm in my (way larger) plain (not for long anymore ) powerchair.

It can be as simple as some lights, a bright colour, couching loudly -you or him- or him being present. May sound weird, but sitting in a chair being a bit subdued or just chatting normally somehow gets less noticed than doing a 'diva-act'. OK, he's a male, but he can do his male version. He's him, he's proud and claiming his rightfull place and being noticed.

For the feet and people tripping? Something that sticks out a bit, or a shoe with a harder nose (can be a problem in de Florida weather). I have put up my footrests for this. Don't allways need it, but feet being higher up get noticed more easily.

My experience is that a lot comes down to claiming your place in society. It can be done by voice, but that's just one of the many ways. We have to be a bit more proactive in claiming that position as some people somehow got this idea we otherwise don't excist/count.

 

[toocherie]

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.

Cheshire--a question--if we get somewhere and feel like walking for a while is there somewhere we can park our ECV that it won't be removed? Stroller area? I'm probably more concerned in the near term about Disneyland but would also be interested in thoughts for WDW.

 

[Cheshire Figment]

When I go into restaurants I will usually park outside unless it looks like it will rain and the restaurant has a big lobby, in which case I will actually park it inside.

Generally I will park in the Stroller Parking area or any place that is not blocking traffic.

 

[mechurchlady]

For Leonsmom

The ECV is a tool that gets me through the day at a public place. Sometimes I feel good and will walk through the lines or get up and go in a shop. For me it is the cumulative amount of walking from place to place. If someone make a remark about me waddling about instead of using the ECV then they will get some learning about celiac, food allergies, arthritis, and my insurance company lol.
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My view on hidden disabilities

This is the first place I have been able to discuss my quirks like biting myself since I was a kid when tired or frustrated. It is an invisible problem of mine that people do not understand. I do not do it on purpose and there is not cure other than training myself how to see it coming and avoid it in the first place.

I quit my church because I was told to grow up and take charge of caring for my mother. I cannot help being ADD or whatever or having quirks and shutting down. I live with a woman who cannot say "I need" It wears you out having to explain why you cannot eat bread or why you cannot do a task.

People do not understand that I am hungry often because there is nothing at home to eat but frozen meat, cand veggies and salad. Yet they have bread, pie, cookies, granola bars, oatmeal, cereal, candy, sandwiches, toast, donuts, moon pies, and so much food to choose from. It is midnight and I am hungry so I can cook but that wears me out or eat peanuts and peanut butter. So tired of explaining.

 

[OneLittleSpark]

Leonsmom, as a Fibromite myself (finally diagnosed after a year and a half) I say go for the wheelchair / ECV, use it when you feel the need to, and when you want to up and walk, go ahead. So what if some jerk you've never met before thinks you're 'faking'? Who cares what they think?

You are going to Disney to have a wonderful time with your family; you're not going to have a wonderful time if you're stuck in the hotel with a major flare going on! Also, if you push yourself too hard, you'll weaken your immune system even more, and could end up with a cold. I don't know about you, but every time I get a cold I'm laid up for two weeks, which is not something you want on holiday.

As CF said, if you want to get out and walk, just park the ECV in the stroller parking and take the key. If it's not exactly where you left it, don't panic, a CM has probably just moved it a little way, to tidy up the area. Putting something distinctive on it will make it easier to find. Also, if you're leaving it when there may be rain (which is pretty much any time you leave it in Florida during the summer), make sure you cover the seat and steering mechanism with a poncho, so it doesn't get wet! One more thing to be aware of, sometimes even a short queue can take a long while to get through, if the ride breaks down or there are delays in loading. Be prepared either for the possibility of a longer wait, or to get out of the queue if the wait gets too long.

Some people find that having a sign on the back of their chair / ECV, saying something like "Fibromyalgia sucks!", helps stop some of the 'looks'.

 

[Earstou]

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?

Rent an ECV! If you are feeling good, ride it for the long distances, then park it when you reach an area or land (like Fantasyland) and walk to the rides. If you are having a bad day, ride it everywhere.
This is how I did it last trip, and it was great. My previous trip, I waited until I was in bad shape to get a chair, and I was a mess for the last two days. I was so bad that I scared a CM. Now, normally I don't tremor, only under extreme fatigue. I was waiting outside the restrooms for my family, stood up to stretch. CM walking in the distance sees me and my body tremors, jerking all over the place, and comes running over, yelling "Are you okay?". I told him I was, but he continued on over to me anyway (guess I REALLY looked bad) and waited with me until family came back.
My last trip I used the ECV. I had the best trip in a long time, and actually wore my family out trying to keep up with ME! I was the designated FastPass person, would go and get the next FastPass and come back to the group. That used to be dh's job, but he didn't have to trudge thru the heat and wear himself out this time. I would park it and walk some of the time. DH used it a few times, as his knees bother him due to damage from being bow-legged (inherited from his dad, whose had both replaced!).
People guess I'm 35, but I'm 50, and I had no negative comments from people. Even if I had, using the ECV increased the trip's enjoyment so much, it wouldn't stop me from using it again.

 

[WDWRocksMySocks]

Great thread! I have two nephews (age 7 & 8) who are legally blind. We usually will rent a double stroller for them and use it as a mobility device. It makes it a lot easier for them to get around the park. We do get our fair share of comments -- whether it be the kids are too old for strollers or they appear fine from a distance. It's sad that people even feel compelled to comment on it really.

 

[GrowingUpDisney]

You know...if people would just mind their own business - there wouldn't be a problem. I will never understand why people feel the need to make other people's business their own.

 

[ntsammy5]

"Fibromyalgia sucks!"

I wasn't familiar with Fibromyalgia so I looked it up. WOW! You're right! Sorry you have it.

 

[WDWRocksMySocks]

You know...if people would just mind their own business - there wouldn't be a problem. I will never understand why people feel the need to make other people's business their own.

AMEN!!!!

 

[OneLittleSpark]

I wasn't familiar with Fibromyalgia so I looked it up. WOW! You're right! Sorry you have it.

Sure it sucks, but you just have to learn to get on with things. Gah! That makes me sound like I'm trying to play the martyr! I'm not, honest! It's just I see it as get on with things and do what you have to, to live the life you want; or give up and let the disease win. Well, I'm a competitive kinda girl, and I'm not one to let anyone beat me easily

 

[Leonsmom]

I completely agree. It DOES Suck!! AND You just gotta deal.
When DH ask how I am doing toady my standard answer is "I'm dealin"

 

[OneLittleSpark]

I tend to go for "I'm alive", which always confuses people: they're not sure whether they should be happy or sympathetic!

 

[Leonsmom]

I tend to go for "I'm alive", which always confuses people: they're not sure whether they should be happy or sympathetic!

 

[Earstou]

I tend to go for "I'm alive", which always confuses people: they're not sure whether they should be happy or sympathetic!

Hey, you stole my line! Seriously, I've used that answer for years, and you're right, it sure does confuse people.
Funny to find out someone else says it!

 

[Piper]

I tend to go for "I'm alive", which always confuses people: they're not sure whether they should be happy or sympathetic!

Something I use frequently is to reply, "Adequately" when asked how I'm feeling or doing.

 

[mom2taylorandemily]

My DD has an invisible disability, she has epilepsy and last year while on vacation she had a gran mal seizure. The Dr. at the Emergency room suggested that we ask for a GAC for her, it never occurred to us to do that. What a life saver it was for us. I didn't have to worry about her just standing in the heat in the queues or dehydrating, I was so thankful to have it, but we did infact endure some stares from others but, I won't hesitate to get one for her this year though.

 

[dragon_mama_76]

Hi everyone! I was hoping you might be able to help with a concern of mine. I'm planning to take my 2 girls on vacation to WDW in December but I'm not sure what to do. Here's the problem:

I have a 12 yo daughter (will turn 13 while on vacation) who has many challenges though none of them physical (or obvious). She has Neurofibromatosis, ADHD and ODD and she is developmentally challenged. She has the mental age of about a 4 year old. She also talks incessantly to anyone with a pulse (though if they didn't have one I don't think she would notice) and offers way too much information about herself ("Hey look, I'm getting (another name for breasts)! Ha ha. They're itchy!" ) She also has no fear of strangers and will go with anyone who offers or promises her something and thinks nothing of running off to pet a dog or look at a baby or anything else that has caught her attention and for these reasons she cannot be left alone.
So anyway, here is the problem. Since I'm a single mother with a preteen and a toddler (will be 4 by the time we go to WDW) I'm not sure how to handle the lines for rides that my toddler can't go on. In the past at other fairs and places with rides the operators and employees who manage the wait lines have been quite rude and given me a big hassle about bringing my toddler into the line since she cannot ride. They persist even after I explain the situation that she can't be out of my sight (which is impossible for most attractions with long lines). All I want to do is wait in the line with her then cross to the exit platform when she boards and wait for her to come off the ride. I've been told that if we aren't riding we can't be in the line. This is very frustrating because she loves to go on thrill rides but often misses out because she can't go alone and I have noone to leave my little one with while I wait in line with the preteen (as bigger families do) and I can't afford to bring anyone else with me (I'm on assistance/disability (for her) because I can't keep a job when taking so much time off for her medical appointments). This is a once in a lifetime vacation for us and I don't want her to miss out on the thrill rides she's most looking forward to because I can't wait with her in line. And when we are forced to leave the line, the reactions from the other people waiting is insane! They make comments because now my daughter has launched into 'meltdown mode' cause she can't go on the ride and we have to squeeze and push our way back through the line to get out even though we are being forced to leave.
As she has no physical challenges she doesn't need a GAC but I was wondering if there's any other form of ID or anything I can get to let the CMs know about our situation without getting laryngitis from having to constantly repeat myself to everyone. It's just so frustrating when we experience things like that because some people don't realize (or care) that being developmentally challenged is a disability too.

P.S. Thanks for all the great info on WDW! You guys are awesome!!

 

[Cheshire Figment]

Hi and to both DisBoards and disABILITIES!

I would suggest that when you arrive and go to the first park, go to Guest Relations and explain the situation as you have explained it here. The people there will be able to assist you. Note that the GAC is for invisible disabilities, which may not be physical.

Note that some of the attractions boarding and disembarking are not at the same spot, but the CMs at the attractions will be able to assist you.