What Having a Wheelchair Means...

[WantToGoNow]

Please tell me they weren't travelling just the two of them, no one else? That's so scary, the two of them both passing out. Who knew what was going on and was able to assist? They are OK now, I hope?

Actually, no they were alone. It was just a short 3-day trip and they thought they would be fine. My dd might be an adult, but I will forbid her to ever do anything like that again.

My dd is now taking 3 injections a day which help keep her blood pressure up (but it messes with her sugar levels so now she also has to test/treat that) and she had surgery in January to slow her heartrate down. A very high heartrate and a very low bp does not make a good combination. She has Neurocardiogenic Syncope, POTS, PSVT, VT, asthma, GERD, allergic to peanuts/treenuts and a bleeding disorder - all are treated with meds and she takes a lot of them.

 

[suemom2kay]

Disney cannot require a doctor's note, no matter what the system is.

I know a lot of people have been accused of faking if they get up sometimes, but even I get accused of faking if I transfer to a different seat with my custom made manual wheelchair that does not even have push handles... So really we need to not care about the people who has decided to mind our business, and take care of our needs.

I agree with this wholeheartedly. People are gonna point and stare and judge. you gotta do what you gotta do.

My daughter spent 10 months in walking casts, boots, non-weight bearing casts, etc. She was accused of faking it more than once in school. She got her 2nd cast off 1 week before our WDW vacation... then had surgery and a new cast about 1.5 weeks after. We brought the wheelchair so she wouldn't have to crutch all day in the parks. She used the W/C in the parks as needed. I saw MANY strollers as wheelchairs in the queues and ppl staring and looking angrily like the families were trying to get away something. It was appalling the selfishness and comments people made. I can tell you these 10 months were eye opening for us. I never realized all the stares and stupid questions people ask or comments they make. Was a tough year for us all. Thankfully DD is doing great in PT and is almost back to 100% strength in her foot/ankle.

 

[WheeledTraveler]

I just wanted to reiterate both the ideas that a wheelchair is actually very liberating and that it does not demean you in any way.

I got my first wheelchair when I was 20 and had had friends who know these things suggesting it for about a year prior. Almost everyone was against it including most of my doctors and my parents. They all had this idea that I would start using it and never leave the wheelchair again so they preferred to suggest that I pretty much not leave my dorm room rather than get a wheelchair. While my parents weren't thrilled once I had it, they did love the fact that all of a sudden I was out doing things I enjoyed again. There are things I've done and loved that I never would have tried had I not started using the wheelchair. I'm pretty close to a full-time user, but I can transfer for rides and stand/walk a few steps. Visually, you wouldn't have any idea that I'm disabled if I wasn't in the wheelchair. If anyone ever made a comment when I've been at WDW (or any where else, for that matter) I haven't noticed. I agree with KPeveler that those who do make comments are saying much more about themselves than they are about you.

One thing people often cite as a reason they put off using a wheelchair is their pride. Using a wheelchair and being disabled does not demean you in any way. Disabled people are not less important or worthy than non-disabled people. I don't care what the disability is and I'm not limiting this statement to physical disabilities/impairments. Impairments (of any type) are a difference. There's nothing inherently bad about being different. I strongly dislike the term "differently-abled" for a whole host of reasons, but I do think that disability is just part of the spectrum of human differences. This isn't a new idea. I'm not sure when disability turned into something negative, but for hundreds of years people with impairments were just accepted as part of life. While people with mobility impairments did have issues getting around, they were still very much part of family life and certainly contributed both by their existence and many did work that could be done seated or in bed. My guess is that the idea that being disabled made you less came in with the industrial revolution and the rise of mass production outside of the home and emphasis on the only "contributions" that mattered being monetary.

 

[geek+nerd]

I will say this - I almost never have had someone say something, even when I get out of my chair and walk onto a ride (which only happens on a good day, but still...) or when I sit on a bench for a minute and my wife or sister or friend sits in my chair. In fact, I have been known to let a new friend sit in my chair and try pushing it around a secluded corner for a minute, so they can see what it is like (I figure it is basically a learning experience, and most people do not realize how hard it is, even with a custom lightweight manual chair, and how wonderful it is to stare at butts all day long). Even then people do not say anything. I have had people get annoyed when I wheel faster than they are walking (I am pushing myself - I am not exactly going that fast!), or when I have to ask them to move because they decided they MUST look at the map on the curb cut. But I go to DL or DCA 2-4 days a week and I have had someone think I was "faking" maybe once or twice. Using a chair for the first time is hard, and not just because you need to learn to drive it, but because, for a lot of people, you have hit a new point in your illness or disability. And that is hard. And I totally understand (I had to make the decision to use it in Disney at 23 years old, and in daily life while I was in the middle of my master's program at 26). A lot of people, usually able-bodied (AB) people, and especially AB family will tell you that using a wheelchair or scooter (or walker, cane, crutch, leg brace, whatever) is "giving in" to your disability and that you should walk as long and as far as you can. Some people even believe it is better to stay home and look "normal" while doing so rather than use a wheelchair/scooter and let other people see you. I will say with absolute conviction and certainty that these people are wrong. Just plain wrong. And if they were in our bodies, they would know this. "Giving in" is when you allow your illness or disability or condition to dictate what you get to do and what you must miss. "Giving in" would be me missing my favorite place on the planet because I am too sick. "Giving in" is when you stop living your life. Sometimes that means living your life with wheels. Really, a wheelchair is absolutely no different than a pair of glasses - it allows us to do what we could not do otherwise (in my case, that means seeing past the end of my own nose - I can't see a thing without my glasses). Not all people want to use a chair. They would rather be in more pain, limit their lives in other ways, than use a wheelchair. And while I do not understand that decision, I respect it as much as I ask they respect my decision. But do not let ABs, who do not have to live in your body with your pain, make the decision for you - especially not people you have never met before and will never see again!

I LOVE every word of this post. I was born with an orthopedic disability (I am lacking hip joints) and have struggled with mobility my entire life. I have used a walker, crutches and/or a wheelchair at various points in my life for varying amounts if time.

At the age of 28, I finally realized that using crutches full time and a wheelchair as needed improved the quality of my life tremendously. I wish that doctors and therapists would have presented this an option in daily life earlier. I spent a lot of time and energy on trying to be mobile with no aids because that's what I was "supposed" to do (ie that's what ABs do). There is no shame in using mobility aids. I missed out on a lot earlier in my life because of trying to meet other's expectations of my mobility level.

 

[rosebud4]

I work with the elderly and another viable alternative to a wheelchair for those who do not wish to "sit" all day is a rollator. Here is an example of one from Amazon. (http://www.amazon.com/Rolling-Walker-Shopping-Basket-Burgundy/dp/B000EGGS7E/ref=cm_lmf_tit_4 ). It's a combination walker that has wheels on all four legs. The bonus is it has a seat to use when necessary. My sister has MS and uses it. We even has pushed her in it as needed. There is a small storage box under the seat and usually a wire basket in the front also. It would give those with some mobility difficulties the ability to walk around the parks but then also be able to rest when standing in a line. Bonus is you will always have a seat for the parades too.

 

[Queenie122]

My daughter was born premature, at only 25 weeks, and we are still dealing with multiple issues. She has a wheelchair but because she is small (9 but looks younger) people assume it's a stroller and we get tons of dirty looks. We even get the stroller Asa. Wheelchair sticker and GAC so the CMs don't turn us away.

We were on her wish trip when she was 4 - where else but Disney! - and want to talk about dirty looks? One of the first days when we didn't know how it worked, a cm pulled us to the front of a line to see clarabell cow. The guy who had been first in line who was now behind us, was making audible nasty comments about us. Finally my husband and I turned around, Make a Wish t shirt and hat and pins and lanyards in full view, and the husband said excuse me? The guy just kind of stared. I said, "I would much rather have been on the end of this line and not gone through years of terror with my daughter." The man felt bad as we turned around.

That was the moment when I realized it didn't matter what other people thought. If they would complain about a child on her wish trip they would complain about anything and I had to learn to not let it bother me.

Over the years I've needed a chair myself. I felt shame and guilt. But I realized I couldn't do the parks without it and why would I not want to do the parks? As my doctor said, you're going to be in pain at home or you could be in pain at Disney, why not be at Disney? Great advice. I just do what I have to for my family to have a good time. Obviously I don't try to impede anyone else's fun but I have just as much right to be there as anyone else!

 

[ttintagel]

That said - Regardless of having the wheelchair or not, a line more then 20 mins is a no go. I can not sit for that amount of time. And I can not stand in a slow-moving line for that time.

Wouldn't the wheelchair allow you to switch off standing and sitting as frequently as you needed to?

 

[KPeveler]

One thing people often cite as a reason they put off using a wheelchair is their pride. Using a wheelchair and being disabled does not demean you in any way. Disabled people are not less important or worthy than non-disabled people. I don't care what the disability is and I'm not limiting this statement to physical disabilities/impairments. Impairments (of any type) are a difference. There's nothing inherently bad about being different. I strongly dislike the term "differently-abled" for a whole host of reasons, but I do think that disability is just part of the spectrum of human differences. This isn't a new idea. I'm not sure when disability turned into something negative, but for hundreds of years people with impairments were just accepted as part of life. While people with mobility impairments did have issues getting around, they were still very much part of family life and certainly contributed both by their existence and many did work that could be done seated or in bed. My guess is that the idea that being disabled made you less came in with the industrial revolution and the rise of mass production outside of the home and emphasis on the only "contributions" that mattered being monetary.

A lot of it came as a result of the eugenics movement between the 1900's and 1960's, though some of the belief continues today. We think of eugenics as a "Nazi idea" and it is true they were the worst of the bunch, but eugenics as a concept was thought up right here in the USA at Yale. There were even pamphlets, speakers, and eventually "movie" clips shown in theatres titled "Should You Have Children?" The idea was that if people with disabilities have children, especially with another person with a disability, then they may produce "defective children."

Until the 1980s it was pretty standard practice for persons with disabilities who were institutionalized to be sterilized - most again their will, some without the intellectual ability to understand what happened. Again, this happened here in the US.

Today there is not just the ability to maintain your pride even if you have a disability or need a mobility device, there is a growing Disability Pride movement. There has long been a strong Deaf Pride culture. What WheeledTraveler said is true - there is nothing negative about disability. We are simply different, not less. I too hate the term "differently-abled" (that makes it seem to me that I should have magic powers, and is used often so people can avoid actually confronting the reality of disability), but I agree - we are just different.

I certain still have my pride, and mostly because of my wheels. With them I can do Disneyland all day solo - go to shows, go on rides (sometimes transferring), go to the bathroom, eat food, all the things everyone else is doing. And my wheels make it possible. Without them, the highlight of my week would involve a trip to Target and I would be stuck at home the rest of the day.

At least for me, wheels gave me back my pride, and independence. Each person must make the choice best for themselves, but I can at least tell you that no one must give up their pride because they need a wheelchair.

 

[tigger&tigerlover]

At least for me, wheels gave me back my pride, and independence. Each person must make the choice best for themselves, but I can at least tell you that no one must give up their pride because they need a wheelchair.

For me, it's been a hard battle because I've always been active. Until my lower back went south. Then after surgery I worked to regain much of my mobility, but unfortunately I still have problems and pain.

I was raised in an era when a disability was a stigma. As a young adult I met and made friends with many that were far more limited in movement than I am now. I think in a way, that made my acceptance of this harder - I thought that there were very talented, capable people that needed the W/C or ECV more than I did.

I have finally managed to convince myself that it's not a scale of comparing myself to others, as there will always be those who have more mobility requirements than I do. I am now considering my own needs as independent of anyone else's requirements. I need the ECV, so I've reserved one.

And it's very nice to see the support among this group. Thanks. Again.

 

[CynJ]

My mom resisted getting one for our first trip in 2002. She had really bad lungs (COPD and asthma) and loses her wind and has to sit. The first couple days of our trip she was fine, but by day three she finally relented and we rented a wheelchair for her. She told me she felt bad that I had to push her and that it was ruining my vacation. (Trust me it wasn't)

By the end of our trip she had used the w/c about 4 days or so and she had so much more energy and really enjoyed herself. She could pop up and browse the shops, and the cast members made it ridiculously easy for her to transfer out of it and into the attractions. That w/c saved our vacation.

As her health has declined in the past few years we've gotten the same pushback from her about not wanting to use one (or an ECV) here at home. Finally it got to the point where she couldn't walk from the handicap parking to a store's door without needing to sit and we purchased a wheelchair.

She and I had a long talk about it and her pushback was coming from not wanting to be looked at as "disabled". My response to her was that she was thinking about the w/c or the ECV all wrong. She needed to thing of them as enabling and not as a symbol of all the things she could no longer do. We can get her out of the house now and out doing things she enjoys.

The great w/c war was a few years ago and my mom is now the master of the Walmart ECV. She is happily planning our 2014 WDW trip with me and is very excited that she'll have a rental scooter to get around on.

I totally agree with the OP - never be afraid to use something (whether it be a w/c, scooter, or cane-chair) if it enables you do to the things you enjoy. And certainly don't worry about what other people may think about it at WDW. Unless you're a frequent guest, the likelihood that you will ever see those people again is slim to none and you are paying the same $$ for your vacation as they are and have every right to enjoy it by whatever means enables you to do so.

 

[ny3boys]

[/QUOTE] She has Neurocardiogenic Syncope, POTS, PSVT, VT, asthma, GERD, allergic to peanuts/treenuts and a bleeding disorder - all are treated with meds and she takes a lot of them.[/QUOTE]

Wow- I have NCS, PSVT, AT, asthma, GERD, hypothyroidism, and Ulcerative colitis. Lots of crossover. What is POTS?

oh, and- I am on this board looking for information for my 6 year old (asthma, allergies, severe GERD, failure to thrive, primary immune deficiency, chronic sinusitis) - not me! I can function fairly well *most* of the time. This will be our first ever trip to Disney and I have decided to get him a stroller as a wheelchair, so he can rest in lines and have a boundary from germy surfaces and people. I was a little worried that people would see a 6 year old in a stroller and think I was a bad parent- but I know now that it is absolutely the right choice for us!

 

[KPeveler]

She has Neurocardiogenic Syncope, POTS, PSVT, VT, asthma, GERD, allergic to peanuts/treenuts and a bleeding disorder - all are treated with meds and she takes a lot of them.[/QUOTE]

Wow- I have NCS, PSVT, AT, asthma, GERD, hypothyroidism, and Ulcerative colitis. Lots of crossover. What is POTS?

oh, and- I am on this board looking for information for my 6 year old (asthma, allergies, severe GERD, failure to thrive, primary immune deficiency, chronic sinusitis) - not me! I can function fairly well *most* of the time. This will be our first ever trip to Disney and I have decided to get him a stroller as a wheelchair, so he can rest in lines and have a boundary from germy surfaces and people. I was a little worried that people would see a 6 year old in a stroller and think I was a bad parent- but I know now that it is absolutely the right choice for us! [/QUOTE]

POTS: Postural Orthostatic Tachycardia Syndrome (change from supine (laying or even sitting) to standing too quickly and the blood pressure drops and the heart rate skyrockets (usually over 130 bpm). For some people, getting out of bed can literally take minutes, because just the act of standing up can make them pass out.

I have that and/or (depending on the day) something similar: orthostatic intolerance (**) which is basically the same idea as POTS but without the HR problems.

That is one good thing about the DIS - you meet other people like you.

This is one reason I use a wheelchair - between the **, POTS, narcolepsy, loss of balance and proprioception due to damage at C2, vertigo, and the fact my body will no longer regulate body temp (30 mins in the sun and my temp will climb to over 100 degrees), I do have this annoying tendency to pass out, fall asleep, trip, or otherwise just fall over.

Even doctors argue with my wheelchair use sometimes (though I do walk inside as much as possible, and do lots of PT), because all they see on paper is the EDS, and they do not understand how stretchy skin and loose joints means I cannot walk. Then I get to explain how for me, loose joints means that my hips, knees, or SI joints will dislocate under my own body weight. That is, if I don't fall over from all the other nonsense my body has decided to do!

By now, all my doctors are on board, as is my family. I am just one more example of how only I know my body, as only you know your body, and so only you can decide if you really do need that wheelchair.

For a long time, "need" meant that you were literally crawling across the floor without a chair. Today, I believe, that "need" includes so much more. And it include part-time or temporary wheelchair use. It especially includes wheelchair use to reduce pain. Even if you can walk in daily life, sometimes you need to consider Disney Distances (I have decided to make this an official term). That means walking somewhere between 5 and 12 miles a day, for several days in a row. Sure, maybe you can make it around your block, but can you do it 10 times, then do it 10 times a day for the next 4 days too?

Even perfectly healthy able-bodied people are sore and hurt by the end of a Disney trip! It is okay to anticipate that you will cause yourself pain by walking too much, and use a wheelchair to avoid being in pain, or reduce it. Most people have no problems thinking of taking medication after they are in pain, but few think of using a wheelchair (or cane, scooter, etc) before they cause the pain.

I keep saying this, and it is one of my three "mantras" when planning a Disney trip, for myself or for others.

1) Don't care what other people think of your wheelchair use. You have never seen these people before, and you will never see them again. (Instead of worrying about them, I just pity them because they are more concerned about the positioning of my rump than enjoying the Happiest Place on Earth)

2) Your entire family will enjoy the trip, and you, more if you are not in pain and Grumpy, Sleepy, or Dopey (you are there to be Happy )

3) There is a difference between surviving Disney and enjoying it. You are on vacation - use whatever tools you need to enjoy it!

 

[utterrandomness]

Even doctors argue with my wheelchair use sometimes (though I do walk inside as much as possible, and do lots of PT), because all they see on paper is the EDS, and they do not understand how stretchy skin and loose joints means I cannot walk. Then I get to explain how for me, loose joints means that my hips, knees, or SI joints will dislocate under my own body weight. That is, if I don't fall over from all the other nonsense my body has decided to do!

I'm in the process of being diagnosed with a connective tissue disorder (possibly EDS, possibly something else, my geneticist is running a bunch of tests to be sure).

I was wondering if you find the wheelchair hard on your wrists? I'm currently using two canes, but I'm finding that they're very hard on my wrists and elbows, so I'm researching other options.

 

[BeerMe]

I have no mobility issues at all. But I find it difficult sometimes to stand in one place for a long time. I have pushed my wife in a WC several times at Disney due to several temporary issues and know that she had to get out of the chair often to stretch. I also have gone with my best friend who has several mobility issues and has to use an ECV. He gets out often too. He is a heavy drinker and I worry about him running over people in his ECV - especially next week at F&W. That's an issue that's not discussed much. He's in his early 70s and is old enough to know better.

 

[TreeSapp]

I also have gone with my best friend who has several mobility issues and has to use an ECV. He gets out often too. He is a heavy drinker and I worry about him running over people in his ECV - especially next week at F&W. That's an issue that's not discussed much. He's in his early 70s and is old enough to know better.

DH and I had major issues with drunk drivers (scooterers? EVCers?) either way! We kept getting our heels run over by F&Wers on wheels! This year we'll just pop in for maelstrom and head back out. DH will just have to go one trip without a delicious artichoke pizza. And I'll have to toughen up and go a trip without the American Experience

 

[KPeveler]

Wow, thread went in a whole different direction, so I am walking this back. I am removing posts about the DAS system, since that is not open for discussion yet and off-topic anyway.

I am also removing or editing negative posts. If people want to continue such a discussion, please take it elsewhere.

I do want to make one very, very important point. On this forum, we never, NEVER make judgments about whether others (on the board, in the parks, anywhere) are "disabled enough" or "sick enough" or whatever enough to "count." Obviously people are free to think what they want, but such comments are never appropriate for the disABILITIES forum. There is no way we can tell, either from a quick glance, or from a few posts on the boards, how "disabled" or "sick" a person is. That is something that is important to remember. We all have different experiences, different disabilities, different manifestations, and we do NOT judge who is "disabled/sick enough" for a wheelchair, a GAC/DAS, any of it. Such statements have no place on this board.

Just because a person can walk in daily life does not mean they can walk in Disney, just because a person is in a wheelchair does not mean they cannot stand, just because someone looks healthy does not mean they are. Even I, who use a manual wheelchair in daily life, can get up and walk onto a ride. So I may look like I am faking, but what you do not see is when I have to skip a ride later because I can only get up once or twice a day, the several pain meds I need just to get out of bed, the visits to the First Aid nearly every day I am in park... You do not see my struggles to get out of bed right now to go spend a couple hours at Disney. Based on some statements that have appeared in the past on this board, I am not disabled, even though I am on SSDI (approved first time through) and use a wheelchair. So we can see the absurdity of such statements.

Please, whatever your personal feelings are in your mind, do not post statements judging anyone else's disability or illness. None of us can set the bar for who is "enough" to be "really disabled." These posts are negative and actually have made others question their use of resources. People actually have cancelled ECV reservations or not asked about a GAC, because judgments like that have appeared on this board. Please be aware that your statements really do affect others.

Posts or statements about who is sicker, more disabled, faking, sick/disabled enough to "count" or use resources available should never be posted on this board. It is mean, harmful, and hurtful.

Anyway...
I never change a thread so much, but this is my thread with a special purpose -to make people feel okay about wheelchair use in Disney, no matter how much they use it, no matter what they do in the rest of their lives.

Thank you for your understanding, and thank you for keeping this thread on-topic and positive. This is a thread about using a wheelchair in Disney, the different ways in which a wheelchair can be helpful, and experiences of using a wheelchair in Disney. We have had a lot of good posts with personal experiences, people looking for a little support in their decisions, and people with questions. Let's keep this going in a positive, supportive, helpful way.

 

[KPeveler]

I'm in the process of being diagnosed with a connective tissue disorder (possibly EDS, possibly something else, my geneticist is running a bunch of tests to be sure).

I was wondering if you find the wheelchair hard on your wrists? I'm currently using two canes, but I'm finding that they're very hard on my wrists and elbows, so I'm researching other options.

I have a lot of info about this, so I will PM you with more details. Here is my quick answer.

If you can get a custom ultra-light manual wheelchair, it can be helpful. Most of the pain in wrists and elbows with EDS starts when you need to stand in one place for more than a minute or two. A wheelchair lets me sit.

In the meantime, you may also want to consider a rollator, because then you can have support, but sit down when you need it.

 

[tigger&tigerlover]

I'm bumping this because with the changes to the GAC/DAS, IMO it wouldn't hurt to remind everyone that renting a wheelchair or ECV does not mean they have to use it every moment.

 

[samnbilly]

I'm bumping this because with the changes to the GAC/DAS, IMO it wouldn't hurt to remind everyone that renting a wheelchair or ECV does not mean they have to use it every moment.

I absolutely LOVE this thread!

I have a Complex Regional Pain Syndrome Type II. Not many ppl even know what it is. It's complicated by a severe back injury while I was forcing myself to continue working, even with a Spinal Cord Stimulator. Finally, there was a "straw" that broke my back! I was forced (or lose my job) to toilet an adult (21 yo) student who had medical issues. There was an incident & I screamed with pain-& that was my back ;(

I used a cane for a few yrs after that. I had a lot of difficulty ambulating & when we went to WDW, my hubby pushed me in a w/c. I hated it, because of course there are attractions that I cannot go on, & I didn't mind at all when they did, but it was difficult to maneuver myself around-no less tiring, because I'm not used to that.

I've been so nervous for this upcoming trip to rent an ECV, but there is so much support on this site-I feel completely secure renting one for my needs. I don't care what anyone thinks or says-there is NO way I can do it without!!

Thanks for all of the amazing support on this board. I never would've had the courage to do this. <3

 

[peemagg]

I have been using a ECV for about 4 years when my RSD (Reflex sympathetic Dystrophy) first started. I have also been using a manual wheelchair for the past year.

I have used both at Disney and after my ECV got broke at Disney last year, I used my wheelchair for the first time there (I had brought it along for some site seeing later in the trip on the way home where the scooter was not a right choice.). I have found it easier for me to use than the scooter. I have a custom made ultra light rigid chair. Without one or the other tools, I would not be able to do Disney or many other activities at home or abroad.

Like many others, I can walk some, but not for very long and not for a whole day at Disney. Some might think I am faking, especially when I am not wearing my braces or they are on under my pants where they can't see them, but I don't care what they think. I will do what I need to in order to enjoy myself.

All ECV's and wheelchairs are are tools to help you get around easier!