WDW with disabilities that people cannot see

WDW Newsletter

New Member
Original Poster
This topic hits home for me and my family. For those of you who don’t know our youngest daughter, Peyton age 9, was born with [FONT=Times New Roman,Times New Roman][FONT=Times New Roman,Times New Roman]Adult Polycystic Kidney Disease [/FONT][/FONT](http://www.pkdcure.org), and will eventually need a kidney transplant. The good news is that hopefully she will be able to make it to adulthood before that time comes.

She looks normal, acts normal, and can do most things that other kids her age can do. With that being said, it amazes people when we tell them about her condition because they expect to be able to see physical signs. She does have some limitations, because of her condition that most healthy nine year olds do not have. She cannot participate in activities that are physical in nature. This eliminates her ability to ride some rides at Walt Disney World such as Space Mountain, or Primeval Whirl.

The disease also causes her to have high blood pressure and because of this she cannot ride attractions such as Rock N’ Rollercoaster or Tower of Terror. She also cannot stand in lines for a long period of time, as she will get more fatigued than the average child, nor be in direct sunlight for long periods of time as well. We were told by a Disney Cast Member that she would be able to obtain a Guest Assistance Pass because of her condition, which would eliminate her need to wait in exuberantly long lines, or standing outside in the sun for long periods of time.

As you can imagine, when we use this card, many guests will give us a rude look, or make comments such as "why are they getting to cut?" They look at Peyton and see a little girl who appears healthy. They do not know her true condition. I can say that I have looked at others and made a comment that maybe they aren’t as incapable as they are appearing just so they can get closer to the front of a line. But after seeing firsthand what has occurred with my daughter, I have re-thought my position and ways of thinking. I don’t know what condition someone else has.
I guess that when most of us think about disabilities we think of things that you can see, not realizing that there are many other conditions that may require special needs that are not visible. The good thing is that most people at WDW are simply there to have a good time, relax, and don’t concern themselves with worrying about things such as this. As we are approaching our next trip to WDW in a few weeks, we know that regardless of what others say, we will live each day to the fullest because we know that nothing is guaranteed.

I would like to hear your thoughts about this and if you have any experiences in dealing with this subject.
 

maggiegrace1

Well-Known Member
Huge hugs..and I will pray for your daughter and your family.

I hope you guys have an amazing time at Walt Disney World.

I personally think that you should just blow off the looks and under the breath comments and enjoy your time.

If people would say something directly to you, then you can always educate them on her illness and explain why she is using the pass but you really do not have to explain yourself to anyone at all.

Sure there are people who do take advantage of the Disability pass just so they can advance to the front but as you know..no one can really tell who is in real need of it or who is just taking advantage based on the way someone looks.

Some disabilities are more obvious then others.


Just have a great time and try not to let those people get to you..I know I would not.

Don't sweat the small stuff..:)
 

shakes20

Active Member
I also have children with special needs. My youngest daughter has several issues that she has to battle, some of which, for a time caused her to go into severe fits. You would not know this to look at her, and there were times when I would be with her in pulic when one of these fits occured. The looks and the occasional comment from people who had no idea what they were talking about really upset me, but there wasn't much I could do about it while I was trying to keep my daughter from hurting herself or someone else. One solution that I used was to carry business sized card with me that explained her condition so that anytime someone gave me a dirty look or said something about me or my family, I could simply hand them the card. It shut them up, educated them a little, and hopefully made them feel a little guilty so that maybe next time something like that happened around them, they would stop and think before they acted.
 

jjgoo

Member
Thank you for posting this. I think it is a good thing to have a reminder every once in a while that people have conditions that are serious but not visable.

I am sorry for the condition your daughter has, but it seems from your post that you all handle it well.

It is too bad but I think it is just a part of human nature that we all tend sometimes to only believe what we see. Of course when hot and tired from standing in line it is going to amplify the obnoxiousness of those people who feel it is their right to stupidly make comments. I would personally ignore them, but the business card idea is a clever. Maybe put people in their place a little.

I for one am happy that I am healthy and can stand in line. The only thing that bothers me is when ECVs or stollers are used as weapons to get through a crowd. Ouch.

I'll remember your letter and as long as I'm not at the Tea Cups I'll try to speak up to those people who make rude remarks about people going to the front of the line.

Have a great trip!
 

fauna

Active Member
I have tremendous sympathy for your daughter and your family. My brother had 3 kidney transplants (I donated one). If only people could realize what a guest relations card or "special" treatment for those with special needs really means to the people who need it. I've gone to WDW w/ my brother in a wheel chair and gotten to avoid some lines and have special parade viewing. I've also gone with him when he was healthy (after transplant), and believe me - we HAPPILY waited in line.

Don't worry about what people might say or think - enjoy a fabulous vacation with your daughter and your family. Best of luck and good thoughts from my family to yours. :wave:
 

The Oggmonster

New Member
Well the problem with some of these people at Disney World is that they can get ignorant. But I am sorry to hear about that.

But I did remembering people saying stuff like that in '97 when my grandpa couldn't stand up for a long period of time or walk, so they had to bring him a wheelchair. But even though people could see that condition, I still heard people saying, "This is unfair, we were waiting in line for hours and these people can just cut us?" Of course my grandpa just told me to ignore them. So yeah some people are just ignorant.
 

PotteryGal

Active Member
DS has autism, usually does well, but I know w/ our trip in June had a tendency to meltdown quickly because of the extreme heat. I usually am so focused on dealing with him I am completely oblivious to anyone commenting or reacting to his behavior. We too had the GAC, but did not need to use it. I think the business card is a wonderful idea, and will keep that in mind for our next trip. Also what these people fail to understand is that while you can enter through an alternate location, you don't get to 'cut' in line. Sometimes the wait can be longer...it just gives you the opportunity to wait in a quieter, less stressful location.
Only people that walk in your shoes will truly understand. The rest is just noise you have to tune out.
 

Burning Metal

New Member
I'm going down to Disney World in August with my wife and stepson. I've had 6 back operations, out of work on permanant disability, and collecting Social Security Disability. I'm on Percocet and Oxycontin...the meds help ALOT, if I didn't have them I would have a hard time functioning. I get dirty looks sometimes for just parking in a handcapped spot at the store even with a tag on our truck! I'm only 44 and don't look "old" I guess...maybe that's one reason why sometimes people don't believe I'm handicapped?
I do have trouble walking for long distances sometimes but not always...I have good days and bad. I guess I'd be eligable for a pass at Disney, don't know where to get one or anything though. I have to admit, I kinda would feel funny cutting to the front of a line though...I mean I don't even need a cane to walk or anything, just kinda walk with a limp...
 

WDW Newsletter

New Member
Original Poster
Thanks everyone for the kind words. Fauna did they have PKD? I just thought that this was a blog I should talk about since it really hits home. It is kinda something that many people think about but dont want to discuss. Take care everyone.
 

Kelsybelle

Active Member
This topic hits home for me and my family. For those of you who don’t know our youngest daughter, Peyton age 9, was born with [FONT=Times New Roman,Times New Roman][FONT=Times New Roman,Times New Roman]Adult Polycystic Kidney Disease [/FONT][/FONT](http://www.pkdcure.org), and will eventually need a kidney transplant. The good news is that hopefully she will be able to make it to adulthood before that time comes.

She looks normal, acts normal, and can do most things that other kids her age can do. With that being said, it amazes people when we tell them about her condition because they expect to be able to see physical signs. She does have some limitations, because of her condition that most healthy nine year olds do not have. She cannot participate in activities that are physical in nature. This eliminates her ability to ride some rides at Walt Disney World such as Space Mountain, or Primeval Whirl.

The disease also causes her to have high blood pressure and because of this she cannot ride attractions such as Rock N’ Rollercoaster or Tower of Terror. She also cannot stand in lines for a long period of time, as she will get more fatigued than the average child, nor be in direct sunlight for long periods of time as well. We were told by a Disney Cast Member that she would be able to obtain a Guest Assistance Pass because of her condition, which would eliminate her need to wait in exuberantly long lines, or standing outside in the sun for long periods of time.

As you can imagine, when we use this card, many guests will give us a rude look, or make comments such as "why are they getting to cut?" They look at Peyton and see a little girl who appears healthy. They do not know her true condition. I can say that I have looked at others and made a comment that maybe they aren’t as incapable as they are appearing just so they can get closer to the front of a line. But after seeing firsthand what has occurred with my daughter, I have re-thought my position and ways of thinking. I don’t know what condition someone else has.
I guess that when most of us think about disabilities we think of things that you can see, not realizing that there are many other conditions that may require special needs that are not visible. The good thing is that most people at WDW are simply there to have a good time, relax, and don’t concern themselves with worrying about things such as this. As we are approaching our next trip to WDW in a few weeks, we know that regardless of what others say, we will live each day to the fullest because we know that nothing is guaranteed.

I would like to hear your thoughts about this and if you have any experiences in dealing with this subject.

My heart goes out to you and your family. By all means enjoy your vacation and be focused on having a wonderful time. It's amazing how ignorant and judgemental some people can be!
 

fauna

Active Member
Thanks everyone for the kind words. Fauna did they have PKD? I just thought that this was a blog I should talk about since it really hits home. It is kinda something that many people think about but dont want to discuss. Take care everyone.

No, unfortunately I've lost two brothers to hyperoxaluria. It's a rare, genetic disease.

Memories of our family trips to WDW are incredibly precious to me. They gave us sunshine and joy during some very dark times.
 

Tiggerish

Resident Redhead
Premium Member
I'll remember your letter and as long as I'm not at the Tea Cups I'll try to speak up to those people who make rude remarks about people going to the front of the line.

Have a great trip!

You know, this is a very good idea. If those of us who have been reminded by other members of this board that not all disabilities are visible would speak up and spread that reminder to people we hear making remarks about guests with passes, we could educate a lot more people, and perhaps make it a little easier on those families with a disabled member, especially if it is one of those "invisible" disabilities.

I will try to make a habit of it, too.

(except when I see a bunch of cheerleaders who have rented a wheelchair and are taking turns running each other around in it...and I have seen that :mad:)
 

StitchMom84

New Member
Bless you and your family. My supervisor's daughter has this disease and now they have found that probably their son has it as well.
Taking the idea of the business card one step further...I am sure there are places for research for this disease that need funding. If you know of such a place..or even a local or national foundation that needs funding/donations, I would print something like "Thank you for your interest in our personal situation. For further education and to donate to research for this terrible disease, please contact/send donations to...etc."
Well, I'd certainly word it differently, but you get the idea..........
Take care and have a wonderful time with your precious daughter..and good luck to you and her in the future.
 

Master Yoda

Pro Star Wars geek.
Premium Member
Unfortunately the world it populated by far to many ignorant, self centered, self adsorbed, narrow minded a-holes with an over inflated sense of entitlement. Make sure you wave at them as you get to walk past them in line and keep taking good care of your little girl.
 
My family understands how you feel about this. My mom has M.S. and has to be in a wheel chair when we go to Disney World. We always get dirty looks from people when we go though the handicapped enterance expecially since it looks like there is nothing wrong with my mom. One time my mom and I were waiting in line for "It's a Small World..." and part of that line you have to wait with everyone else and then the handicapped enterance is right before the giant ramp. So we were going through the first part and the woman in front of us heard us talking about the handicapped enterance and then saw where it was and turns to her husband and says "That is so unfair, why should a bunch of cripples and retards get to cut the line and make the rest of us wait longer. If you ask me they should have to wait in the normal line like the rest of us and if they cant then they shouldn't get to ride at all." My jaw hit the floor when i heard that. My mom stood up, which is hard for her when she sits in the chair all day, and taps the woman on the back. The woman turns around and says "Can I help you?" My mom says "I am really sorry that you have to wait in this line. If you want, you can have this terrible illness and get to use the handicapped enterance and I will stand in line. Trust me, I would rather stand in line then be treated speical for having trouble walking." My mom just sat right back down. That shut the woman up and we didnt hear her say a single word until we ducked into the handicapped enterance.
 
The only thing that bothers me is when ECVs or stollers are used as weapons to get through a crowd. Ouch.

Yeah I was trying to get off an elevator at AKL and some guy in an ECV came plowing on and ran me over. My biggest fear was falling on the guy...luckily I didn't...just fell on the ground of the elevator. I didn't get hurt, no harm done.

People are ignorant and if someone gets better treatment (a very bad way to describe it) than them for ANY reason, they are going to pitch a fit. THANK GOD FOR GUEST ASSISTANCE PASSES. Thankfully no one in my family needs them, but they bring so much light into the familys that truely need them. Disney is awesome trying to find ways of spreading the "magic" with everyone. Yes, some people abuse it but it brings a lot of happiness to familys who truely need it.

I have no problem waiting in long lines in the hot sun, we paid to be there! No one has any rights to make comments about ANYONE with a guest assistance pass because it's none of their business. It's not up to us to judge if they truely need it or not! There IS a reason they have them and everyone needs to mind their own business.

There is my own two cents!
 

bgoebel

Member
First off, My thoughts and prayers are with all of you who have a family member you travel with that has a medical issue.
I know exactly how you feel. My five year old daughter has a heart arrhytmia (currently maintained by medicine however this is a chanct at anytime she can have an episode even on medicine). This condition leads to heart failure (her heart beating too fast leads the organ to fail). She looks completely normal and healthy (my friends often remark that they forget she has a heart issue because she is such a well-adjusted, healthy looking young girl). We have to make modificiations to what she does and watch her during periods of excitement/high exercise. She will most likely receive a catheter ablation within the next few years. Trips to the hospital are not abnormal and in fact every summer our cardiologist likes us to try her off her medicine to see how her heart reacts/get an EKG during an episode(since I"m home with her durign the summer- I work in the schools). Which means we can plan on atrip to the ER.
I also have great sympathy for the parent of the child with AUTISM (can't remember your posting name). I am a speech therapist who works strictly with children with Autism (we have constructed a special program here in a Cincinnati School District for children with Severe Behavioral or Educational concerns due to Autism).
Posting Threads like this make you realize what's important. Have a great day everyone!
 

Elonwy

Member
I know it's been mentioned here before but i always found the best retort when someone is passive-aggressively rude...IE says to their husband in a voice loud enough for everyone to hear "Oh, they're lucky, they just get to cut in front of everyone while we have to wait" is to offer to trade...ask the jerk in line to take the crippling disease and you would happily wait in line.

Wouldn't we all rather wait than need a GAC? I know I would.
 

PotteryGal

Active Member
First off, My thoughts and prayers are with all of you who have a family member you travel with that has a medical issue.
I know exactly how you feel. My five year old daughter has a heart arrhytmia (currently maintained by medicine however this is a chanct at anytime she can have an episode even on medicine). This condition leads to heart failure (her heart beating too fast leads the organ to fail). She looks completely normal and healthy (my friends often remark that they forget she has a heart issue because she is such a well-adjusted, healthy looking young girl). We have to make modificiations to what she does and watch her during periods of excitement/high exercise. She will most likely receive a catheter ablation within the next few years. Trips to the hospital are not abnormal and in fact every summer our cardiologist likes us to try her off her medicine to see how her heart reacts/get an EKG during an episode(since I"m home with her durign the summer- I work in the schools). Which means we can plan on atrip to the ER.
I also have great sympathy for the parent of the child with AUTISM (can't remember your posting name). I am a speech therapist who works strictly with children with Autism (we have constructed a special program here in a Cincinnati School District for children with Severe Behavioral or Educational concerns due to Autism).
Posting Threads like this make you realize what's important. Have a great day everyone!

Bless you for the work you do with our kids. :wave: And my thoughts and prayers go out to you and your brave little girl - it makes you appreciate every day doesn't it? We think we are supposed to teach children....inevitably they end up teaching us. :)
 

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