Inquiring Minds Want To Know
Why does Jess use a wheelchair? I get this question every time we share pics from a Walt Disney World vacation. The short answer is that it is necessary; the only way Jess can navigate through the parks. Our very first trip to Walt Disney World Resort Florida was in 2000. Since then, we have done Disney enough to know how to be prepared for experiencing the parks with an autistic blind adult.
Jessica’s Mobility and Endurance
In familiar home settings, Jessica’s mobility is so great that it is easy to forget about her vision impairment. However, take her out of a familiar environment and everything changes. Outside, particularly on a sunny day, her vision decreases significantly due to her cortical vision impairment. That dramatically slows down her mobility. And I mean s-l-o-w.
She moves with caution and fear of the unknown. Add to that mild right-sided weakness and severe attention deficit. We have to alert her to every change in terrain, every step up, step down and obstacles in her path, like people.
Pedestrians do not notice that she can’t see and some will actually run into her thinking she will move out of their way. When that happens? Oh boy, Jessica is so taken by surprised and offended that she can just about start a riot in a few seconds flat.
Jessica can only make it a short distance in that kind of environment before she is exhausted and unable to continue. That is not fun for any of us, especially since we are at Disney for the happiness and magic.The Wheelchair
This leads me to Jessica’s favorite part of the trip, I kid you not. Her wheelchair. It is the single most important item that we take on our trip. Jess + wheelchair = total bliss. For all of us.
One of the things I have learned over the years is to pay attention to which rides allow her to stay in the wheelchair. Another consideration is which require a fast transfer or require the use of a moving walk-way. If I prepare her ahead of time, she is sort of okay with transferring out of the wheelchair when it is required.
Jessica’s biggest issue with transferring out of the chair is the worrying that it won’t be there when she gets back off of the ride. She needs lots of reinforcement that the chair will still be there when she finishes the ride.It’s For The Family
Big picture, using the wheelchair is not just for Jessica. It is for the whole family. We invest of time, energy, and of course money, to go find and experience this magic and happiness. Why would we not do everything we can to make sure we have the best experience possible?
Just a thought, maybe put a bike lock on her chair and if she really stresses about the chair going missing during a ride, you can secure it to a fence or something?
I know that you mentioned that you’ve had ppl comment about the wheel chair and not understand that she can walk during Disney trips. My response is this- if you think with her medical issues it’s easy to walk and using a cane. You come with us on our next trip and we will put 25-30 lb was on your leg and arm ( same side, as. Jess has weakness on one side .) but a really really dark pair of sunglasses on them slap a cane in their “stronger” hand. Tell them have at and see how long they can walk like that!!! Comments like that burn my a&$@. When I was her age I’m lucky to walk through a county fair for hours and at that time I had no physical issues like jess has.
Sry I’ve been stewing about that for a cpl of days and trying to decide if I should state my opinion. So today I finally said well if they can voice their opinion I guess I can too!!
For people who don’t understand, I’ve often thought about suggesting they go blindfolded as well.
Absolutely a must! That is great you can all go.
I agree with the previous commenter: very well written! It makes perfect sense that a wheelchair would become such an important tool to allow Jess to feel relaxed and comfortable enough to allow herself to really have an enjoyable time in that kind of environment.
Hello.. I was not one of the inquiring minds, however I wanted to read your response, and to tell you it was so well written . I worked in special education for 20 years. Ranging from preschool age to adults with disabilities. The children & adults who’s parents parented them, and did not give them up to the system just thrived that much more. So congratulations for being the wonderful mother that you are, and sharing your journey with the world. Vacation looks SO good on YOU!
Thank you! ❤️