Monday, July 03, 2006

Caregiving: Disney & accessibility

     In a comment a question was raised about Disney World and accessible rides. Yes Patti has been to Disney World, a couple times in varying levels of MS progression. 

     I should qualify “a couple times” before anyone thinks we are jet setters. <grin> I was raised on the Mickey Mouse Club and while my college contemporaries partied on the beach for Spring Break; I was in Orlando for the opening of Disney World. I'm addicted.

     From experience I can say that prior to Annette Funicello’s public disclosure of her diagnosis of MS and her level of disability that Disney World was “not” as accessible as it is today. Coincidence? Who cares? Both Disney World and Universal Studios are now state of the art accessible.

     One of my fondest memories involves Disney World, and an accessible cruise on “It’s a Small World”. Disney outfitted special boats for wheelchairs, scooters, and companions. Something like every 10 boats was outfitted this way. There was no conventional able bodied seating on the boats, so if there were no other disabled riders then you basically had the boat to yourself. Patti hates the “It’s a Small World” ride, and I love the ride. She agreed to allow herself and wheelchair to be exploited so I could avoid the long line and agreed to go on the “stupid ride”. … We were cruising through the ride and with no one else in our boat, I was free to sing along with the dolls over Patti’s objections. Then the greatest thing ever happened, a true Disney miracle … the ride broke down! We were stuck in Disney heaven!  … A “voice” announced for your entertainment pleasure while waiting that the famous “It’s A Small World Dolls” would remain singing. YEAH! Of course, now I had to sing along to drown out Patti’s curses and threats! It was over 30 minutes of non stop “It’s a Small World” until Disney staff came wading up to rescue Patti and pull our boat to the exit.   

     Now on the other hand when Megan wants to ‘use’ her Mother and ride something like Space Mountain with her twice because disabled riders and companions get to ride twice Patti is always up for that. <grin>

     All in all most major amusement parks are fully accessible within common sense. Frankly I used to feel somewhat uncomfortable because sometimes accessibility privileges seemed a bit unfair to those who had stood hours waiting in line to ride a popular ride. However that’s all a moot point any more with the innovation of time stamp ride passes for the most popular rides because long waiting lines exist only in nostalgia.

     What has stopped us from visiting Disney World anymore is “attended care”. Surprisingly no major park offers such care. Childcare is offered but no adult day care. Patti simply cannot endure a full day, especially weather like Orlando, FL and I cannot leave her alone in a room to nap. I was increasingly between a rock and a hard place as to what to do to accompany our daughter in the Park yet enable Patti to get rest.

     Even hiring a companion for the Park was not available the last we researched it. For example, if I wanted to get in line with our daughter for one of the more thrilling rides or even go on “It’s a Small World” which Patti will never again go near. I have to leave Patti unattended and she will very shortly get confused and roll off. Disney World is a big place.

     There are also incontinence concerns. “Family restrooms” are never equipped to lay a person down. Yet a person as disabled as Patti dependent on others for 90% of her Activities of Daily Living requires a changing area for Depends and clothing the size of a bed. We would have to stay in lodging with the absolute closest proximity to the Park (the most expensive). Should incontinence become a factor when I wasn’t immediately present the companion would have to affect the necessary changing. This is a physically demanding task. At Patti’s care facility this involves two staff members and a lift, though being macho I do manage it myself. <grin>

     Attending any amusement Park with progression of Patti’s MS has become MORE than just the accessibility of the rides. We knew how MS could progress and jammed multiple family visits into the early years. Those trips are treasured.

     It doesn’t matter whether you are living with a chronic illness or able bodied you are only given today with your family. … and it really doesn’t matter where you make the most of it.

It's a world of laughter

A world of tears

It's a world of hopes

And a world of fears

There's so much that we share

That it's time we're aware

It's a small world after all


  1. Thank your for answering my question in this entry. I am glad to hear that you found Disney mostly accessible. I hadn't thought about the incontinence problem you would have with an adult with MS, nor the challenge of finding an inexpensive place to stay, or even the need for a companion to help take care of a her while your family embarked on a ride without her. So, in reality, there are still great strides to take to make public theme parks more accessible to folks in wheelchairs and their families. I'm with Patti, though. We skipped the Small World ride because of the repetitive tune that I would not have been able to get out of my head afterward. I did see a blurb in the map brochure that the Small World ride had been recently painted, but no thank you. Although, the words you quoted here are very hopeful and profound in their simplicity, we decided to pass it by in favor of one of the faster moving rides. Have a fun July 4th, or a quiet one. Mine is going to be relatively quiet this year, but I'm good with that. Bea

  2. i think you should send a letter to disney and tell them what you just told us. who knows they might listen. i am so glad you got to take the trips early on. what great memories
    Have a great 4th:)


  3. very insightful post, Patrick. I'm sure those memories are treasured of trips in the past. Now I got that song "Its a Small World" stuck in my mind :)

    The first time we took our kids to Disneyland, Matt, now 17, had just turned 4. The first ride we took him on was Pirates of the Caribbean, then Haunted Mansion; both of which he really didn't like. Then we took him over to Its a Small World. Halfway through the ride he turned to me and said "now Disneyland is fun".



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