From a community member:
I have been doing a lot of research about accessibility in travelling and have not found a way to take my daughter on the trips that she wants.
My daughter has severe arthrogryposis affecting all of her joints below the neck. She cannot use her arms or her legs. Her legs are fixed straight, both knees and ankles are fixed in place. Her wheelchair has an extension that supports her legs in front of her. The sides of the extension open up to allow her legs to spread to the sides when she is not moving. Her hips are adducted outward and her shoulders are abducted inward; part of the arthrogryposis. If her legs are contained straight for long periods of time her knees can become sprained due to the push outward from the hips. Her elbows, wrists and finger joints are also fixed. She cannot use her arms or her hands. She is prone to fractures is she falls or bumped hard.
We did travel when she was younger and I could carry her onto a plane and sit her in the bulkhead seat. As she is grown now we travel in our accessible Sienna and bring her Hoyer and commode with us.
The difficulty is when she wants to travel further. She dreams of going to Europe. She want to see Amsterdam, Wales and England. She also wants to travel to Los Angeles, California. She now weighs over 200 pounds and I can no longer lift or carry her. I cannot even do a lateral transfer.
Can you think of any way we could safely travel?
First off… kudos to you for wanting to help your daughter fulfill her travel dreams under difficult circumstances.
So I am guessing that a solution would require that your daughter be able to stay in her mobility device while traveling for her comfort and safety.
The only two travel methods that would allow for that are rail and cruise ship. In the US, AMTRAK has wheelchair accessible cars which allows passengers to stay in their wheelchairs which are tied down using similar technology as bans. The accessible rail cars have several rows of seats removed which leaves ample room for a couple of wheelchairs and it also has a pretty large accessible rest room.
The option for getting to Europe may be a cruise. You probably would need to travel with a PCA to help but the ships are very accessible and it may work. All of the major cruise lines have disability assistance offices that can help arrange things.
Not sure if these two options work financially or geographically for you but I wish you luck!
Just wanted to say your an awesome sauce parent!!! I don’t know anything about traveling with wheelchairs however I’m thinking perhaps RV’s that way she can rest whenever she needs to and also a nurse companion to help lifting her another came to mind Amtrak I saw that in there website they have accessible carts and I know some cruise ships have some as well not too sure chow accessible they both are and how expensive they are as well but it won’t hurt to look into it. I’d think RV’s might be the best way. Wish y’all the best
I was going to suggest cruising. We went to Europe and were able to book several tours in handicap accessible vans. Look for the accessible shore excursions and book them right away
Hi, It’s Pinky again; one of your Forum Moderator’s. I just wanted to piggyback off a recommendation from hita1lopez (who always has amazing advice). Wanted to throw a vote in for the idea of an RV trip. We just had a good conversation about this going this Spring about How to Find an Accessible RV. Just based on what you described and the style of chair positioning, I am nervous to vote for trains or cruises just due to the turning radius needed to get down the corridors and into the cabins on both (including the accessible cabins). I also like the idea that you have your own control of where you go, when you drive and when you don’t; vs. being stuck on the train/ship and its mercy for stops and locations.
I did want to add an update to that article about renting Accessible RV’s vs. purchasing. Outdoorsy has a rental directory that allows you to filter out ones that are ADA accessible and here are the instructions on how to use. Worth checking the photos of each one to make sure it has the right features for you. Some RV’s for rent have gone above and beyond with their ADA upgrades and will blow your mind; and some are older RV’s that may not have the same kind of features as the newer ones (who thought out the adaptability a bit more thorough.
There may also be ones closer to where you live that are listed independently online; can’t hurt to check? That might be a great way to go to Los Angeles; and California is like nowhere else for making sure ADA laws are followed. That will make the trip so much easier for you. (Why do I keep picturing the movie Vacation and a jaunt to Wally World?..hehehehe)
Definitely agree with others that getting a travel PCA would make all of your vacation more enjoyable; and that is the point of a vacation right? There are some national companies that help with that and some that may be local based to you and can just travel roundtrip from the same starting area.
You need to make sure you can get a break for yourself while on vacation too. Being a Caretaker is the hardest work on the planet and if anyone deserved a holiday, its you!
Totally understand what a challenge it is to figure out how to take a vacation when having to address so many challenges, but you’re a SUPERHERO for doing what you do for your daughter. I’m sure you are already walking this earth with wings on your back.
I will brainstorm with some friends of mine about how to pull off Europe, because I know that will mean the most for your daughter. If you could let me know what starting point you would be leaving from, that would be helpful?
(Or if you already have an adapted van and just want to go on a grand road trip? We could help set you up with one of the agents at AccessibleGo to help you secure all the right lodging for the trip. (I only help with travel knowledge in the Forum).
Really hope we can help make this happen for you and your daughter; You Deserve THIS!