WDW Special Needs Survey

[DebWills]

Hi Folks,

Passporter Press announced a new book a few months back. WDW for Your Special Needs. Debra Martin Koma and I are the co-authors.
This book is on traveling to Walt Disney World with Special Needs (like hearing/vision impairments, mobility concerns, size issues, ADD/ADHD, autism spectrum
disorders, etc.). As part of our research, we've put together a survey to find out how well (or not) Disney meets the special needs of its
visitors.

It's a fairly lengthy survey, but if you have the time and inclination, we'd sure appreciate you sharing your experiences with us.

http://websurveyor.net/wsb.dll/16347/DisneyWorld.htm

As it says up front, you MUST answer every question or else you can't proceed to the next section. That means clicking N/A for every
category or item that doesn't apply to you.

Anyhoo... if you can get a roundtuit, we'd really appreciate the input! Thanks in advance!

Deb Wills

 

[clkelley]

Hey everybody, If you havn't met both Debs, or the PassPorter folks, let me tell you that they will do everything they can to make sure this Guidebook is outstanding!!!

Please help them (AND US) out by filling out the survey.

(I've met both Debs and Dave and Jennifer)

Carol

 

[SueM in MN]

I did the survey before you posted here, but I have a suggestion if you do another survey.
For each type of disability in the survey, you asked for a best and worst ride, but it would be helpful to know why - like was it not accessible, was the wait long, etc. I put a few comments in, but there really wasn't a place to add comments on this.

 

[DebWills]

Hi Everyone,

Carol - thanks for the warm welcome. Looking forward to seeing you next week.

Sue - great suggestion.... Each time we do something new on the book, we learn a zillion more things.... and we especially appreciate all the input.

Deb

 

[mbb]

 

[Mike Bartenhagen]

Just curious what everyone else thinks about some of the items that they are considering "special needs". Like many of you here I have a special needs child. He is three years old and has the cognative ability of a 1 year old. He has over 100 seizures a day and has every day for two years. We have been to 3 hospitals in 2004 trying to find answers. We wend to WDW this fall and had a great time. We had a Guest Assistance Pass but rarely used it, only when we needed to keep his wheelchair with us. What bothers me about this book is that they would include overweight people under the title of special needs. I think that really discounts the label of special needs. If you want to include this in a book change the title but please don't put my child in the same catagory as someone who is unable to control their weight.

Mike

 

[Ahrizel]

I'm mostly on the disAbilities board because of my work with kids with severe disabilities. However, I also look-and respond-to people of size with questions about the world. As a 300lb 5'9" woman my size does effect my when I go to parks, though rarely at Disney. Some big people are heavy due to diet/exercise issues, others because of medical/genetic issues. Many, I think, have a combination of both. People with disabilities have should not be judged on appearance, those of size shouldn't be either. It is rarely as simple as it looks on the surface. I, for one, am looking forward to this book as a much needed resouce for many people.

 

[Mike Bartenhagen]

I am not judging anyone but as I said my problem is with the title of the book and the fact that parents of special needs children would purchase this book and see this listed as a "special need". I have an aunt that weighs well over 300 pounds who I love dearly but never have I told anyone that I have a "special needs aunt".

Mike

 

[SueM in MN]

FIrst of all, a general reminder to keep playing nice.

I do think that the word "Special" has meaning to some people that others outside that group are not totally aware of.

To an average person without disabilities, special may just mean "extra"; i.e. someone who is Pooh sized does need some extra information/planning to be aware of which rides will accomidate them; someone who is pregnant also has some extra situations they need to be aware of; etc.
I'll call these "Life situations" because they are not usually disabilities, they are just how life is at this time for that person. Some of the people in those life situations might also have need for accomidation because of their life situtation. No blaming for their situation, it just is whatever it is.
People in those life situations might have no problem with saying they have "Special Needs." I'm not speaking for the writers, but I have a feeeling that this is the meaning of "Special" that they are considering.

BUT, inside the disability community, "Special Needs" has a very specific meaning and basically means "Having a disability that causes Special Needs." I'm not speaking for Mike, but I think that to some people with family members who have disabilities, lumping them together with those who have "life situations" devalues their (or their loved ones) disabilities.
So, there may be a group of people who feel that "Special Needs" should not be applied in as broad a manner.

 

[jeancbpugh]

FIrst of all, a general reminder to keep playing nice.

I do think that the word "Special" has meaning to some people that others outside that group are not totally aware of.

To an average person without disabilities, special may just mean "extra"; i.e. someone who is Pooh sized does need some extra information/planning to be aware of which rides will accomidate them; someone who is pregnant also has some extra situations they need to be aware of; etc.
I'll call these "Life situations" because they are not usually disabilities, they are just how life is at this time for that person. Some of the people in those life situations might also have need for accomidation because of their life situtation. No blaming for their situation, it just is whatever it is.
People in those life situations might have no problem with saying they have "Special Needs." I'm not speaking for the writers, but I have a feeeling that this is the meaning of "Special" that they are considering.

BUT, inside the disability community, "Special Needs" has a very specific meaning and basically means "Having a disability that causes Special Needs." I'm not speaking for Mike, but I think that to some people with family members who have disabilities, lumping them together with those who have "life situations" devalues their (or their loved ones) disabilities.
So, there may be a group of people who feel that "Special Needs" should not be applied in as broad a manner.

Interesting. Is a severe food allergy a special need or a life situation?

 

[dclfun]

I filled out the survey, however there are certain attractions I don't attempt or by their very nature aren't accessible to someone who can't transfer, so I found the "choose only one" feature a bit limiting. Like Sue, it is helpful to those of us with specific special needs to be able to describe. For instance, there are some resorts which are very accomodating and others which I can never stay at again due to the layout, etc.- it would have been a great help to have this information at hand ( which I did not get from the special needs reservations agents ) while in the planning stages. As it was, we've ended up being transferred three times to different resorts after checking in and finding the accessible room didn't meet my needs. I'd be glad to participate in any forum which would enable an author to help others visit WDW or DCL with a disability. Kathy

 

[SueM in MN]

Interesting. Is a severe food allergy a special need or a life situation?

I think the distinction I was trying to make is that "Special Needs" with capital letters has a specific meaning to many people that is different than "special needs" (small letters).
I'm not saying I agree/disagree or defining what is or is not a special need (capital or small letters). I'm just indicating that some people will understand "Special Needs" in a different way than it may be intended.

 

[arminnie]

FIrst of all, a general reminder to keep playing nice.

I do think that the word "Special" has meaning to some people that others outside that group are not totally aware of.

To an average person without disabilities, special may just mean "extra"; i.e. someone who is Pooh sized does need some extra information/planning to be aware of which rides will accomidate them; someone who is pregnant also has some extra situations they need to be aware of; etc.
I'll call these "Life situations" because they are not usually disabilities, they are just how life is at this time for that person. Some of the people in those life situations might also have need for accomidation because of their life situtation. No blaming for their situation, it just is whatever it is.
People in those life situations might have no problem with saying they have "Special Needs." I'm not speaking for the writers, but I have a feeeling that this is the meaning of "Special" that they are considering.

BUT, inside the disability community, "Special Needs" has a very specific meaning and basically means "Having a disability that causes Special Needs." I'm not speaking for Mike, but I think that to some people with family members who have disabilities, lumping them together with those who have "life situations" devalues their (or their loved ones) disabilities.
So, there may be a group of people who feel that "Special Needs" should not be applied in as broad a manner.

Excellent post SueM in MN.

I agree that it can all get rather sticky. I am legally disabled according to Social Security (very lengthy and difficult process as it probably should be), but for now I really don't feel that I have any special needs at Disney.

I have debilitating fatigue at times, but there is not a lot that Disney can do to make that go away. If I am having a really bad day I might spend the day in my room (did that today), so that hopefully I can enjoy the parks tomorrow. If you see me when I am NOT having a bad day you would never guess that I have a disability.

My situation is so totally different from a child or adult who will never be out of a wheelchair. I am so very greatful for what I can do and do not begrudge others with special needs (upper or lower case) receiving whatever can help them enjoy WDW.

 

[SueM in MN]

Excellent post SueM in MN.

I agree that it can all get rather sticky.

Thank you.
I wasn't sure if I put it in a way that made sense, but I hope it did.

 

[Ahrizel]

I think I managed to stir things up, though that wasn't my intention. I'm quite familiar with Special Needs, I've worked for 15 years with kids with severe disabilities. The young lady I hope to get to Disney next year has spastic sp, non-amulatory, seizure disorder and severe mr. She's a first rate goof, and quite the ) Any information that helps her trip is most welcome, the short section on disabillities that most guidebooks have is basically useless for her. I'd love to see information on dealing problems that aren't covered in the average book-how do I change a kid that doesn't fit on a changing table? pureed food? This specialized info, but those who need it, really need it.
Pooh sized people also need information. I don't know how many times I've seen questions about size on these boards. Do I consider myself disabled or Special Needs-no. Do I need information that isn't available in other guidebooks-you betcha. The world is designed for 'average' folks, any who deviate from that 'average' in a significant way need information to help them get the most from it. This book will really help with that. I welcome anything that makes is easier to for more people to enjoy WDW. What frankly provoked my response to Mike's comments was the statement of yours "please don't put my child in the same catagory as someone who is unable to control their weight" This seemed to me to be a somewhat derogatory comment about those who are overweight. I realize that all of this is a pretty sensitive issue for all of us, so I may interrupting it incorrectly. This is, as your child is to you, a topic that provokes strong feelings.

 

[dclfun]

More and more research points to "overweight" as something genetic, other factors, etc. which *is* more of a medical issue than merely someone being unable to control the amount of food they eat. Any issue which makes someone feel "different" or unable to participate in life's activities the same as the norm ( such as being unsure whether they will fit into a ride vehicle safely and comfortably) goes beyond the realm of what's included in a guide book for the general public. I agree that anyone who doesn't fit into the square peg should be able to find guidance and advice prior to their trip- doesn't matter what the label is that addresses the issues. Just my opinion. Kathy

 

[SueM in MN]

I think I managed to stir things up, though that wasn't my intention. I'm quite familiar with Special Needs, I've worked for 15 years with kids with severe disabilities. The young lady I hope to get to Disney next year has spastic sp, non-amulatory, seizure disorder and severe mr. She's a first rate goof, and quite the ) Any information that helps her trip is most welcome, the short section on disabillities that most guidebooks have is basically useless for her. I'd love to see information on dealing problems that aren't covered in the average book-how do I change a kid that doesn't fit on a changing table? pureed food? This specialized info, but those who need it, really need it.
Pooh sized people also need information. I don't know how many times I've seen questions about size on these boards. Do I consider myself disabled or Special Needs-no. Do I need information that isn't available in other guidebooks-you betcha. The world is designed for 'average' folks, any who deviate from that 'average' in a significant way need information to help them get the most from it. This book will really help with that. I welcome anything that makes is easier to for more people to enjoy WDW. What frankly provoked my response to Mike's comments was the statement of yours "please don't put my child in the same catagory as someone who is unable to control their weight" This seemed to me to be a somewhat derogatory comment about those who are overweight. I realize that all of this is a pretty sensitive issue for all of us, so I may interrupting it incorrectly. This is, as your child is to you, a topic that provokes strong feelings.

I don't want us to get into a debate about whether people who are overweight can control their weight or not, or whether they are overweight because of medical, genetic or psychological reasons. That's not really important. How or why they are the way they are (or anyone else with special needs has special needs), does not change the need for some extra information and planning. The needs are there no matter why they exist.....

I agree with everything you wrote. It may not be life-threatening, but is important to someone who is Pooh-sized to know whether they will be able to go on the sleigh ride with their SO, or whether someone will look at them and say they are over the weight limit for the Segway Tours, or whether they will fit on the seats on Space Mountain, etc, etc, etc.......

Like you said, there is plenty of information for "average" people who are going to WDW. And there is a lack of information for anyone who is "not average" (whatever that means).
My own "Special Needs" child is 19, so I've been at this a while and what words are used to refer to who don't really matter to me. But it is a long journey to acceptance. And there are a lot of people who are newer to this than I am and have a lot of raw feelings and emotions that are close to the surface. That's what I was trying to point out.

BACK TO ANSWERING QUESTIONS:
I forgot whether or not you got your "where to change someone who is too big to fit on changing tables" and "purreed foods" questions answered. Do you still need some help?

 

[Ahrizel]

The questions I listed were partially for example, changing her is a matter of a counter in a companion room or the first aid/baby care center. Which is an improvement over the floor of a handicapped bathroom-the usual setup for me on local outings. The pureed food is another story. We have a baby food grinder we use that helps, we use it at restaurants for her, especially Italian(her favorite). But counter service and snacks are a worry, can't exactly grind up a cheesburger easily. I've bought the stage 3 baby foods for her, but I'd prefer to feed her regular food. I'd like to feed her the regular foods , I see several character meals in her future It's not a problem of appetite, she likes her food very much, thank you. Major league chocoholic too. She's going to come out of Chef Mickey's on a serious chocolate high-and it has Donald Duck her all time favorite! It just needs to be pureed, or at least close to it, she can't chew. I know Disney is very accomadating, but I can't say I've ever seen pureed food addressed before. I've gotten really good at improvising with her, but suggestions would be much appreciated.

 

[3DisneyNUTS]

I just took the quiz and while my son has developemental issues and epilepsy I really think that the box for those options encompasses too much, too broad IMO. It seems like an after thought to autism and ADD. Sadly many books focus around those issues since they are common but those of us who have high functioning brain injured children are lumped into either developmental delay/epilepsy/other. Which fortunately for those with epilepsy don't go hand in hand with dev delay. My point being to be accurate dev delay should be seperate from epilepsy and Dev delay should be broken in to sub categories. JMHO though

 

[sorcerer mouse]

My daughter has ADHD. We took her to WDW for the first time on her 8th birthday. WDW and their castmembers could not do more to make our trip better. We had a note from her doctor explaining her problem and we received the pass that allowed her and up to 6 quest in our party to avoid any and all lines. I know that if she had to wait on August lines she would have been nuts. Don't let any disability stop you from going to WDW.