chaospearl
Earning My Ears
- Joined
- Aug 19, 2005
I have known a lot of people - myself included - to find out the hard way how stressful it can be to use an ECV or wheelchair at the parks when your disability is not something immediately apparent. Most people are kind and understanding - some are not. Some are VERY much not. You do unfortunately get the stares, the accusing glances, sometimes even actual questions: "Why do you need an ECV? You don't look disabled?" or my favorite, "What's wrong with you?" I like to tell people I have a highly specific and debilitating allergy to rudeness, and it makes my knees and ankles swell up so I can't walk...
Um, anyway. I have systemic-onset rheumatoid arthritis (Still's disease) combined with severe osteoporosis from 15 years of prednisone, and three total joint replacements - both hips and l. shoulder. I can walk on my own, sometimes normally or with a slight limp, but to be on my feet for longer than 20 minutes or so, I need assistance. I have often encountered rudeness in the parks due to the fact that I can transfer out of my ECV when necessary, and sometimes I even park it right outside the attraction and go into the "normal" queue with everyone else, if the ride is something where it's just easier to walk through the short queue rather than hassle the ECV in and out of the designated areas.
I had one experience at the Magic Kingdom - at the Jungle Cruise queue - where a family behind me included a man in an ankle-support cast who was also using an ECV. We parked together at the off-to-the-side area where wheelchairs and ECVs wait for the accessible boat (I can transfer into MOST rides - but Jungle Cruise is really difficult, as there's quite a significant step down into the boat and nothing stable to hang onto, and after one memorable incident where my knee buckled as I was stepping and I nearly toppled into the water, now I usually wait for the special boat with the ECV lift unless I'm completely confident my joints will cooperate that day).
As it so happened, the very next boat coming in WAS the accessible one, so myself and the other family were boarded first, before the other people in the regular queue. Quite a few were upset about this but I noticed that everybody who had a problem, had it with ME. The man with the ankle brace clearly "had a good reason" to need assistance, although he was able to park his ECV and climb into the boat with the aid of two members of his party. I was traveling alone and had no one to help, and CMs are not allowed to physically assist you onto the rides, so I didn't have a choice about driving my ECV onto the boat. The people in the queue seemed to feel that I was "stealing" the one ECV slot on the boat from this man, who obviously needed it, while I obviously didn't need it and was just a healthy teenager (I'm 26 but look a LOT younger) who didn't want to walk. Now I knew this was not so, as I'd chatted with the other family while we waited for the boat with the lift, and offered to wait and take the next one because his family had a small child and I didn't mind waiting even though I had been there first. He assured me that transfering into the boat was no problem for him, and he had planned to do that anyway even if I hadn't been there.
I was given several dirty looks from the other passengers, and when the ride ended and we were all to disembark - the ECV stays on until last when everybody else has gotten off the boat - two people moving past me towards the exit actually reached over and SHOVED me hard by pushing my upper arm, and one kicked me in the ankle while he walked by. All three were part of a single group who had been staring at me disapprovingly and whispering the whole time. I said quite loudly, "Excuse me!?" but apparently nobody else had seen this happen, or chose to keep quiet, so I didn't want to make a fuss about it to the CM. I seethed, but inwardly.
The entire incident did have one positive effect. After seeing and speaking to the man with the ankle brace, I thought about the fact that I always pack my knee brace for Disney trips, as well as a couple of Ace bandages and a wrist brace, in case I need extra support as the day wears on. I'm in the habit of not wearing them unless very necessary, simply because in everyday life, wearing a knee brace a lot of people stop and ask, "What did you do to your knee?" or similar, and I feel uncomfortable explaining repeatedly that I didn't injure my knee, it is just swollen or unstable from "a bad day" of arthritis. Particularly because lots of people who ask that question are kids who often don't understand how a young woman can have arthritis. I know, that I should never become frustrated with questions from children - they only mean well - but it hurts inside after the fourth time in one supermarket that I hear, "Oh, my grandma has arthritis too, she's 105 years old and she is in a wheelchair and can't potty by herself!" Now there is certainly no offense meant to anybody chair-bound - I am grateful every day of my life to be as mobile as I am - but it's just hard, as a young woman with plenty of self-esteem problems as it is, to constantly be compared to an old lady and to have kids eagerly launch into stories of the time they had to change grandma's diaper. That is what comes to their minds when I explain that I have arthritis. To most children and even more teenagers than I like to think about, it's "a disease old people get".
In normal life, wearing my various braces can be a nightmare... but at Disney parks, it has become a lifesaver! After the Jungle Cruise incident I did not so much as turn the ignition key on my ECV until I had securely wrapped my knee in the orthopedic brace. From that point on I didn't encounter even ONE dirty look, or rude comment, from people who question whether I really need the ECV. I've since taken another Disney trip and this time wore my brace from the beginning, and it was the first trip I've ever been on where I felt completely at ease, no stress, and didn't spend all my time worrying constantly about whether somebody might be glaring at my back as I rode by on the ECV. It felt wonderful! I may not particularly need the brace on any given day, but it is a visible "symbol" of disability that people see and understand. To me, I find it much easier than constantly explaining myself, enduring or ignoring the rudeness that comes with living with an invisible disability, or worrying about it.
I have been told I talk too much - LOL. I am sorry for how long this was. To sum up: If you are a Disney fan with an invisible disability, and must use a wheelchair, ECV, GAC, handicapped parking permit, or any other form of assistance that occasionally garners rudeness and accusations of whether you're "faking" in order to receive perks - it may be helpful to wear a small brace somewhere on your body, or even a simple Ace or wrapped gauze bandage around a leg. Regardless of whether your particular disability has anything to do with mobility - you are still disabled and this may help to indicate to other people that you do have special needs, or at least shut them up from saying something very inappropriate and hurtful to you because "You don't LOOK disabled!" Well, now you do! LOL. It is not their business what your needs may be. While I understand the self-righteous feeling that we shouldn't have to explain ourselves - it's unfortunate that we often end up having to, anyway. And it can become frustrating, uncomfortable, stressful, or just plain annoying "do we have to go through this AGAIN?" after the billionth time.
I hope I have not offended anyone - it was certainly not my intention to belittle anyone's needs or situation. Nor am I in any way advocating the deliberate misleading of people with questions\concerns about your disability or the needs you may have. All I really wanted to say - and being me, I had to take a page and a half to do it! - is that I do have an "invisible disability" and I have encountered stress and rudeness because of this, and I wanted to share my solution in the hope that it may be helpful to someone out there.
If this post is inappropriate, please inform me and I will immediately take it down. It occured to me mid-way through writing it that some people who are NOT disabled may come here looking for ways to effectively "fake it" ... but I'd think that wearing a knee brace would be a rather obvious thing to do in that case, and those sorts of sad, selfish people aren't exactly getting any brand-new exciting ideas from me. LOL.
cheers!
Jenni
Um, anyway. I have systemic-onset rheumatoid arthritis (Still's disease) combined with severe osteoporosis from 15 years of prednisone, and three total joint replacements - both hips and l. shoulder. I can walk on my own, sometimes normally or with a slight limp, but to be on my feet for longer than 20 minutes or so, I need assistance. I have often encountered rudeness in the parks due to the fact that I can transfer out of my ECV when necessary, and sometimes I even park it right outside the attraction and go into the "normal" queue with everyone else, if the ride is something where it's just easier to walk through the short queue rather than hassle the ECV in and out of the designated areas.
I had one experience at the Magic Kingdom - at the Jungle Cruise queue - where a family behind me included a man in an ankle-support cast who was also using an ECV. We parked together at the off-to-the-side area where wheelchairs and ECVs wait for the accessible boat (I can transfer into MOST rides - but Jungle Cruise is really difficult, as there's quite a significant step down into the boat and nothing stable to hang onto, and after one memorable incident where my knee buckled as I was stepping and I nearly toppled into the water, now I usually wait for the special boat with the ECV lift unless I'm completely confident my joints will cooperate that day).
As it so happened, the very next boat coming in WAS the accessible one, so myself and the other family were boarded first, before the other people in the regular queue. Quite a few were upset about this but I noticed that everybody who had a problem, had it with ME. The man with the ankle brace clearly "had a good reason" to need assistance, although he was able to park his ECV and climb into the boat with the aid of two members of his party. I was traveling alone and had no one to help, and CMs are not allowed to physically assist you onto the rides, so I didn't have a choice about driving my ECV onto the boat. The people in the queue seemed to feel that I was "stealing" the one ECV slot on the boat from this man, who obviously needed it, while I obviously didn't need it and was just a healthy teenager (I'm 26 but look a LOT younger) who didn't want to walk. Now I knew this was not so, as I'd chatted with the other family while we waited for the boat with the lift, and offered to wait and take the next one because his family had a small child and I didn't mind waiting even though I had been there first. He assured me that transfering into the boat was no problem for him, and he had planned to do that anyway even if I hadn't been there.
I was given several dirty looks from the other passengers, and when the ride ended and we were all to disembark - the ECV stays on until last when everybody else has gotten off the boat - two people moving past me towards the exit actually reached over and SHOVED me hard by pushing my upper arm, and one kicked me in the ankle while he walked by. All three were part of a single group who had been staring at me disapprovingly and whispering the whole time. I said quite loudly, "Excuse me!?" but apparently nobody else had seen this happen, or chose to keep quiet, so I didn't want to make a fuss about it to the CM. I seethed, but inwardly.
The entire incident did have one positive effect. After seeing and speaking to the man with the ankle brace, I thought about the fact that I always pack my knee brace for Disney trips, as well as a couple of Ace bandages and a wrist brace, in case I need extra support as the day wears on. I'm in the habit of not wearing them unless very necessary, simply because in everyday life, wearing a knee brace a lot of people stop and ask, "What did you do to your knee?" or similar, and I feel uncomfortable explaining repeatedly that I didn't injure my knee, it is just swollen or unstable from "a bad day" of arthritis. Particularly because lots of people who ask that question are kids who often don't understand how a young woman can have arthritis. I know, that I should never become frustrated with questions from children - they only mean well - but it hurts inside after the fourth time in one supermarket that I hear, "Oh, my grandma has arthritis too, she's 105 years old and she is in a wheelchair and can't potty by herself!" Now there is certainly no offense meant to anybody chair-bound - I am grateful every day of my life to be as mobile as I am - but it's just hard, as a young woman with plenty of self-esteem problems as it is, to constantly be compared to an old lady and to have kids eagerly launch into stories of the time they had to change grandma's diaper. That is what comes to their minds when I explain that I have arthritis. To most children and even more teenagers than I like to think about, it's "a disease old people get".
In normal life, wearing my various braces can be a nightmare... but at Disney parks, it has become a lifesaver! After the Jungle Cruise incident I did not so much as turn the ignition key on my ECV until I had securely wrapped my knee in the orthopedic brace. From that point on I didn't encounter even ONE dirty look, or rude comment, from people who question whether I really need the ECV. I've since taken another Disney trip and this time wore my brace from the beginning, and it was the first trip I've ever been on where I felt completely at ease, no stress, and didn't spend all my time worrying constantly about whether somebody might be glaring at my back as I rode by on the ECV. It felt wonderful! I may not particularly need the brace on any given day, but it is a visible "symbol" of disability that people see and understand. To me, I find it much easier than constantly explaining myself, enduring or ignoring the rudeness that comes with living with an invisible disability, or worrying about it.
I have been told I talk too much - LOL. I am sorry for how long this was. To sum up: If you are a Disney fan with an invisible disability, and must use a wheelchair, ECV, GAC, handicapped parking permit, or any other form of assistance that occasionally garners rudeness and accusations of whether you're "faking" in order to receive perks - it may be helpful to wear a small brace somewhere on your body, or even a simple Ace or wrapped gauze bandage around a leg. Regardless of whether your particular disability has anything to do with mobility - you are still disabled and this may help to indicate to other people that you do have special needs, or at least shut them up from saying something very inappropriate and hurtful to you because "You don't LOOK disabled!" Well, now you do! LOL. It is not their business what your needs may be. While I understand the self-righteous feeling that we shouldn't have to explain ourselves - it's unfortunate that we often end up having to, anyway. And it can become frustrating, uncomfortable, stressful, or just plain annoying "do we have to go through this AGAIN?" after the billionth time.
I hope I have not offended anyone - it was certainly not my intention to belittle anyone's needs or situation. Nor am I in any way advocating the deliberate misleading of people with questions\concerns about your disability or the needs you may have. All I really wanted to say - and being me, I had to take a page and a half to do it! - is that I do have an "invisible disability" and I have encountered stress and rudeness because of this, and I wanted to share my solution in the hope that it may be helpful to someone out there.
If this post is inappropriate, please inform me and I will immediately take it down. It occured to me mid-way through writing it that some people who are NOT disabled may come here looking for ways to effectively "fake it" ... but I'd think that wearing a knee brace would be a rather obvious thing to do in that case, and those sorts of sad, selfish people aren't exactly getting any brand-new exciting ideas from me. LOL.
cheers!
Jenni
Oh my gosh, that is TERRIBLE!!!!!! How could somebody do that to a person?! I don't know if you were in shorts or pants, but if you were in pants, how were they to know you didn't have a brace/split/cast/etc. or prosthetic or healing surgical wounds?! Regardless of what you wore, you could've had a problem that would cause you severe pain, broken bones, or other injury when they pushed/bumped your arm and kicked you! I'll bet they would've ruined their own vacation had you had that fragile bone disease and ended up needing to go to the hospital - and later ended up in court against them!! Some people are idiots - they obviously are some of those ppl! 
)
So, I may borrow your idea and wear a knee brace to stave off any negativity from other people. thanks again! and boo/hiss to those mean people on the jungle cruise who treated you so badly--I hate judgmental people! (oops--does that mean I'm judgmental? LOL)
or at least more independently. My shoulder is shot and my hands aren't that great, but I opted for a manual wheel-chair for various reasons. Its amazing to be able to get around with a more reasonable amount of pain, but it is also really limiting at times 
