Another Sad Thread

[cmwade77]

It saddens me a bit when I read threads like this one and see people's comments. It reminds me just how far those of us with any sort of special needs have to go to get the same respect as those that don't need any assistance. It reminds me of the last time we were at Sea World in San Diego, DW needed to get an ECV as I simply couldn't push anymore, I had done all that I could. We were on the waiting list for one and just as we were headed for lunch, they called and said one was available, luckily we were going right by the rental location. Well, the first one was out of charge, the next one got going and we went over to eat, well where we were eating it said for the disabled to use the exit and pointed to the exit to use, so we did, once we got in there we quickly realized that it pointed to wrong exit (of two), so DW was trying to back out, so I suggested that the employee that was cleaning help us back out, she just laughed! Needless to say I was upset, I was starving by this point, as we took extra time to get the ECV, well I ended up with two managers and two regular employees apologizing for the other employee's behavior. In addition, the manager gave us our meals for free. In addition during this, the ECV failed, so they got another one and brought it, it also failed, so we ended up getting our money back for the ECV and left, but they did the right thing, I just hope that the employee who laughed got some sensitivity training at the very least, but somehow I got the impression she wouldn't be there the next time that we went.

 

[SueM in MN]

Saw the thread and responded.
The sad part is that the people who are making the most comments will continue to think like that no matter what anyone says.
And, if they or a loved one end up needing to use a wheelchair ever, they will be the first to complain about it being so hard.

 

[cmwade77]

I know, it just is frustrating to hear it, I am lucky that I do not have more problems than I do. I have seen both sides of it and no one can truly understand what we go through until they experience it. I think perhaps 3 weeks of being confined to a wheelchair or other simulated disability should be mandatory for all high school & college students, really everyone that does not deal with this daily, maybe then they could understand, but you would have to find a way to prevent them from cheating.

 

[amesv]

I just read through the whole thread and am near tears...which is weird for me. I'm generally pretty upbeat about our "issues", but my DS has been struggling lately and some of those posts stung.

Dathan is 14 and has cerebral palsy with moderate spastic quadriplegia. He relies on a rolling walker for basic daily activities and a wheelchair for long distances. His coordination is affected so simple things like buttoning his blue jeans and tying his shoes are difficult.

Lately, he has been experiencing what all teenagers do...an almost desperate need for independence. He's an intelligent and sensitive kid with the same kinds of thoughts, wishes, and feelings as any other. But with a body that won't keep up.

I know that people "cheat" in order to receive the perceived perks that are intended for the disabled. On a scrapbooking message board that I participate on, there was a post about an upcomong Disney trip and the writer was asking for tips. One of the 1st replies included this helpful little tidbit- "Maybe rent a wheelchair. I know it's cheating, but your kids can take turns riding in it so they don't get too tired from all of the walking. Plus, you won't have to wait in line as long. Disney is expensive and you deserve to get your money's worth!"



If people like that only knew how much Dathan HATES his chair...how much he would LOVE the chance to hop up and do something as simple as STAND in a line...or heck, even use a public bathroom without help. If they want the "perks" that come with a wheelchair, I've got a few more to share. How about the priviledge of watching your friends play basketball from the sidelines? Or the fun that comes with being either ignored or treated as if you are 3 years old? As young as 5, Dathan realized that in his wheelchair, he was treated differently and struggled to use his walker as much as possible so that he could look his classmates in the eye. As he put it, "My wheelchair makes people talk to me like I'm a baby." Maybe they'd like to take a turn with the painful physical therapy that Dathan needs to prevent contractures in his legs? Perhaps they would like to share in the bullying that he had the pleasure of receiving recently?

I'm rambling...and I sound bitter which is really not the case. I am very grateful for Dathan's progress and potential. He is an amazing kid and we really do have a great life! This has just been a rough year and he's going into HIGH SCHOOL soon...which scares me to death.

We're going to WDW in October with a party of 10. We have already started discussing who will accompany Dathan through the accessible attraction entrances not because we're all eager to "cut" but because we need someone strong enough to help him into the rides. *I* envy the families who don't have to think about that.

Amy

 

[Ziggy]

I read the first post of that thread and won't read any further as it will only upset me. Amy I too am having difficulty getting my 16 year old to agree to go in a chair, we were at the mall last week, we walked slowly but she still had problems and experienced pain and the mall is a lot smaller than DL.

I wish these people that make these comments would open their eyes and see the whole picture, my daughter has missed out on so much of her teenage years because of her disability (arthritis and hypermobility) her friends were able to go ice-skating, on camping trips etc that she couldn't go on. She loves the Disney theme parks because they treat her fairly but some of the looks she gets from other visitors have really annoyed me, how dare they judge when they don't know what DD's life is like. Anyhow stopping now before I get angry .

 

[Forevryoung]

My opinion:

There has long been the perceived notion that individuals with disabilities have perks in all environments. I believe that it started with the Disability Rights Movement- when people advocated for themselves and laws were created to protect basic rights. Clearly, "others" did not see them as necessary rights or else laws wouldn't have had to be implemented.

Until an individual has fully experienced living with or having a disability (as defined by the ADA for arguments sake), explanations unfortunately, will not be adequate for some.

 

[mykidsintow]

I just responded.... Won't go back to read anymore. People are morons.

 

[alizesmom]

If it's the thread I think, I responded last night and am going back later. Most of us just want an even scoreboard and equal access. If it's a different thread I may just get ill. Karen

 

[breezy1077]

Here's what I don't get, and if anyone can offer me any insight - I'd love it.

But, what is the motivation for some posters to advocate so strongly for the able-bodied? I don't get what would keep some posters going. I have a couple inclinations, but am truly dumbfounded by such tenacity.

 

[Talking Hands]

I just read through the whole thread and am near tears...which is weird for me. I'm generally pretty upbeat about our "issues", but my DS has been struggling lately and some of those posts stung.

Dathan is 14 and has cerebral palsy with moderate spastic quadriplegia. He relies on a rolling walker for basic daily activities and a wheelchair for long distances. His coordination is affected so simple things like buttoning his blue jeans and tying his shoes are difficult.

Lately, he has been experiencing what all teenagers do...an almost desperate need for independence. He's an intelligent and sensitive kid with the same kinds of thoughts, wishes, and feelings as any other. But with a body that won't keep up.

I know that people "cheat" in order to receive the perceived perks that are intended for the disabled. On a scrapbooking message board that I participate on, there was a post about an upcomong Disney trip and the writer was asking for tips. One of the 1st replies included this helpful little tidbit- "Maybe rent a wheelchair. I know it's cheating, but your kids can take turns riding in it so they don't get too tired from all of the walking. Plus, you won't have to wait in line as long. Disney is expensive and you deserve to get your money's worth!"



If people like that only knew how much Dathan HATES his chair...how much he would LOVE the chance to hop up and do something as simple as STAND in a line...or heck, even use a public bathroom without help. If they want the "perks" that come with a wheelchair, I've got a few more to share. How about the priviledge of watching your friends play basketball from the sidelines? Or the fun that comes with being either ignored or treated as if you are 3 years old? As young as 5, Dathan realized that in his wheelchair, he was treated differently and struggled to use his walker as much as possible so that he could look his classmates in the eye. As he put it, "My wheelchair makes people talk to me like I'm a baby." Maybe they'd like to take a turn with the painful physical therapy that Dathan needs to prevent contractures in his legs? Perhaps they would like to share in the bullying that he had the pleasure of receiving recently?

I'm rambling...and I sound bitter which is really not the case. I am very grateful for Dathan's progress and potential. He is an amazing kid and we really do have a great life! This has just been a rough year and he's going into HIGH SCHOOL soon...which scares me to death.

We're going to WDW in October with a party of 10. We have already started discussing who will accompany Dathan through the accessible attraction entrances not because we're all eager to "cut" but because we need someone strong enough to help him into the rides. *I* envy the families who don't have to think about that.

Amy

Amy,
The young man that was our valevictorian this year has severe CP. He did not speak until age 10, cannot move except for one hand. He recieved numerous awards and accolades. In the fall he will attend Harvard on a full scholarship. I am sure your son will do great in high school Tell he go for it. Yes there will be naysayers but he will also have friends and advocates.
Sweetest story I heard was from Grad Night. His Dad, who was his aide, did not accompany him, but several of his friends were there to help. They got to Space Mountain and the wheelchair line was rather long but the able bodied line was a walk-on. His friends picked him up out of his chair and literally ran to the ride and got on the ride. They were laughing all the way.

 

[cmwade77]

I do not know, but I think we ALL need to make OUR voices loud and clear on there, as if we don't stand up for ourselves, who will? And we need to keep at it, people need to understand what it is really like to have to deal with this every day.

 

[boakl1968]

I just read through the whole thread and am near tears...which is weird for me. I'm generally pretty upbeat about our "issues", but my DS has been struggling lately and some of those posts stung.

Dathan is 14 and has cerebral palsy with moderate spastic quadriplegia. He relies on a rolling walker for basic daily activities and a wheelchair for long distances. His coordination is affected so simple things like buttoning his blue jeans and tying his shoes are difficult.

Lately, he has been experiencing what all teenagers do...an almost desperate need for independence. He's an intelligent and sensitive kid with the same kinds of thoughts, wishes, and feelings as any other. But with a body that won't keep up.

I know that people "cheat" in order to receive the perceived perks that are intended for the disabled. On a scrapbooking message board that I participate on, there was a post about an upcomong Disney trip and the writer was asking for tips. One of the 1st replies included this helpful little tidbit- "Maybe rent a wheelchair. I know it's cheating, but your kids can take turns riding in it so they don't get too tired from all of the walking. Plus, you won't have to wait in line as long. Disney is expensive and you deserve to get your money's worth!"



If people like that only knew how much Dathan HATES his chair...how much he would LOVE the chance to hop up and do something as simple as STAND in a line...or heck, even use a public bathroom without help. If they want the "perks" that come with a wheelchair, I've got a few more to share. How about the priviledge of watching your friends play basketball from the sidelines? Or the fun that comes with being either ignored or treated as if you are 3 years old? As young as 5, Dathan realized that in his wheelchair, he was treated differently and struggled to use his walker as much as possible so that he could look his classmates in the eye. As he put it, "My wheelchair makes people talk to me like I'm a baby." Maybe they'd like to take a turn with the painful physical therapy that Dathan needs to prevent contractures in his legs? Perhaps they would like to share in the bullying that he had the pleasure of receiving recently?

I'm rambling...and I sound bitter which is really not the case. I am very grateful for Dathan's progress and potential. He is an amazing kid and we really do have a great life! This has just been a rough year and he's going into HIGH SCHOOL soon...which scares me to death.

We're going to WDW in October with a party of 10. We have already started discussing who will accompany Dathan through the accessible attraction entrances not because we're all eager to "cut" but because we need someone strong enough to help him into the rides. *I* envy the families who don't have to think about that.

Amy

Thank you Amy! I am tired of people thinking that I am beating the system because I have a special-needs child! Yes, I can take the "better" parking spaces, but that is a miniscule compensation for everything my son has to endure. He too has CP, and while he can walk with his AFOs, he will never be a "typical" child. Believe me, I'd GLADLY give up my option to have a GAC for my son to be healthy and able to keep up with his brothers.

It sickens me that anyone would rent a wheelchair in order to have the appearance of a handicap so that they may cut in line. Why can't they be appreciative of their family's health and do the right and moral thing?

Throughout my journey with my special needs son, I have found some of the most generous, kind thoughtful people I have ever met and I have also encountered rude, boorish, and shameful humans that have ever existed. Those who "fake" a disability in order to take advantage of the so-called "perks" given to the handicapped, fall into the second category. They should be ashamed of themselves

 

[Mskanga]

My daughter already replied there , I would gladly exchange with those people .

 

[Figaro]

I almost never respond to those kinds of threads any more since people are not interested in learning the reality of how a disability affects life at WDW. What I do is to use those threads to increase the number of people that I have in my "ignore" file.

I made a decision a long time ago that I was not going to allow people who don't understand and don't want to understand the power to have any effect on MY feelings. Since I changed my attitude about those threads to the belief that it is a wonderful way for me to learn to avoid and ignore certain people I find that they don't bother me anywhere near as much as they used to.

 

[darthtatty]

glanced at other thread and thought............... its so sad that people have those attitudes

 

[mrsksomeday]

Originally Posted by amesv
I just read through the whole thread and am near tears...which is weird for me. I'm generally pretty upbeat about our "issues", but my DS has been struggling lately and some of those posts stung.

Dathan is 14 and has cerebral palsy with moderate spastic quadriplegia. He relies on a rolling walker for basic daily activities and a wheelchair for long distances. His coordination is affected so simple things like buttoning his blue jeans and tying his shoes are difficult.

Lately, he has been experiencing what all teenagers do...an almost desperate need for independence. He's an intelligent and sensitive kid with the same kinds of thoughts, wishes, and feelings as any other. But with a body that won't keep up.

I know that people "cheat" in order to receive the perceived perks that are intended for the disabled. On a scrapbooking message board that I participate on, there was a post about an upcomong Disney trip and the writer was asking for tips. One of the 1st replies included this helpful little tidbit- "Maybe rent a wheelchair. I know it's cheating, but your kids can take turns riding in it so they don't get too tired from all of the walking. Plus, you won't have to wait in line as long. Disney is expensive and you deserve to get your money's worth!"



If people like that only knew how much Dathan HATES his chair...how much he would LOVE the chance to hop up and do something as simple as STAND in a line...or heck, even use a public bathroom without help. If they want the "perks" that come with a wheelchair, I've got a few more to share. How about the priviledge of watching your friends play basketball from the sidelines? Or the fun that comes with being either ignored or treated as if you are 3 years old? As young as 5, Dathan realized that in his wheelchair, he was treated differently and struggled to use his walker as much as possible so that he could look his classmates in the eye. As he put it, "My wheelchair makes people talk to me like I'm a baby." Maybe they'd like to take a turn with the painful physical therapy that Dathan needs to prevent contractures in his legs? Perhaps they would like to share in the bullying that he had the pleasure of receiving recently?

I'm rambling...and I sound bitter which is really not the case. I am very grateful for Dathan's progress and potential. He is an amazing kid and we really do have a great life! This has just been a rough year and he's going into HIGH SCHOOL soon...which scares me to death.

We're going to WDW in October with a party of 10. We have already started discussing who will accompany Dathan through the accessible attraction entrances not because we're all eager to "cut" but because we need someone strong enough to help him into the rides. *I* envy the families who don't have to think about that.

Amy

Amy,
The young man that was our valevictorian this year has severe CP. He did not speak until age 10, cannot move except for one hand. He recieved numerous awards and accolades. In the fall he will attend Harvard on a full scholarship. I am sure your son will do great in high school Tell he go for it. Yes there will be naysayers but he will also have friends and advocates.
Sweetest story I heard was from Grad Night. His Dad, who was his aide, did not accompany him, but several of his friends were there to help. They got to Space Mountain and the wheelchair line was rather long but the able bodied line was a walk-on. His friends picked him up out of his chair and literally ran to the ride and got on the ride. They were laughing all the way.

I agree with Lisbet, your son will do just fine in High School. My dbf has CP, is in a power wheelchair, he was President of his freshmen class in HS, he was also a team manager of the football team for all 4 years.

He has 3 college degrees and is currently working on his Masters in Rehabilitiation Administration with a 3.8 average.

You sound like a wonderfully supportive mom, he will do great!!

As for that other thread, ignorance is the only reason for some of the things said there. Let them have even one of the medical issues that the posters on this forum have and they would just shut up.

 

[breezy1077]

I honestly think the only reason for the thread is , and some folks are happy to rile us up. JMHO.

 

[Ziggy]

I suggest we don't stoop to their level and ignore their silly hurtful comments.

 

[OneLittleSpark]

These kind of threads always make me want to turn into a vigilante wheelchair user. They think they've got it bad now? Just wait until they see what I can do when I put my mind to it

Maybe we should start our own threads, complaining about having to wait longer on rides like Buzz; or getting cut up by the able-bods; or having to wait ages for the larger stall, because someone's little princess didn't like her princess dress.

I'm trying to keep my temper in check on that thread, and repeatedly explain that actually we don't get all these imagined perks. When I read some of the posts, though, I do find myself thinking "awww didums, did the nasty wheelchair user make you wait ten whole minutes more to get on a bus?!" I know, I'm evil

One good thing about these threads, though, is that it does bring some of the caring and compassionate people to the surface too. These threads often get one or two replies from people who used to be firmly on the 'other side' of the debate, but then spent a day or two in a wheelchair and realised what things are really like.

Don't let these nasty guys stress you out, you lovely people, they're not worthy of your attention

 

[LolaCola]

I'm sorry, I have to post two more times in order to reply to pm from a poster in this thread.

I do agree with almost all the sentiments expressed here.