Ali and wheelchair with beach in the background arms waving in the air

Traveling is challenging enough as a quadriplegic with respect to bed heights, doorway entrances, accessible showers, the list goes on.  I always travel with a caregiver. I actually have less needs than a lot of my friends because I pretty much stick my head in the sink to wash my hair and take a shower on a bed. 
I don’t need access to so many things my friends do. However, there are a few key differences that are essential for safety and comfort when I’m traveling to hotels.
One of my “medical curses” you could say is my skin. You look at me I quite literally get a pressure sore.  So, how soft the mattress is is critically important and I also need to sleep at a 20° angle for respiratory issues at night.  With paralyzed abdominal muscles I breathe my diaphragm, so I don’t get as much oxygen into my lungs as an able-bodied person does.
There are certainly devices you can purchase to put under the mattress to inflate the head or pillow top foam overlays I could bring with me.  However, if I brought all of the equipment that would make me incredibly comfortable in a hotel room, I would fill up a van (when I drive places) to the brim, and would likely be out of luck when traveling by plane.
So, what have I had to do? I have to adapt.

How do I do this?

I was just in Charlotte, North Carolina giving a keynote speech this past weekend and you will, comically, see the difference in setups between my bed and my caregiver’s bed. On my bed I order extra pillows and create a type of wedge in order to keep my head up. I have to sleep upside down where my feet are towards the headboard and my head is that the end of the bed, so my caregivers can pull me up when I slide down, dress me, etc.

picture of Ali smiling in hotel room with adapted bed mattress in the back with stuffed animals

I also have an inordinate amount of fluffy pillows and blankets I bring with me because of thermal regulation issues and sensitive skin issues. We all have our own ways to make challenging situations work for us individually.  I actually get some of my ideas from others in my disability groups and adapt those to my own life.

picture of hotel mattress with pillows under the head to raise up and pillows and blankets and heating pads adapted for sleeping
picture of standard hotel bed for caregivers

Also, when I travel, I take a bed bath with towels and buckets because it’s really challenging to bring an entire shower chair with me.  I tilt my power chair backwards in the sink and wash my hair.  Of course, this would not work for my manual wheelchair friends, but this is what I do as it saves a ton of time and I can go out and enjoy my vacation or my business conference in a more casual manner.

I’m a little different with respect to my needs because I have a caregiver with me who is able to help me all of the time.  Many folks are not so lucky or they travel alone.  I know how critically important it is for my manual wheelchair user friends to have a big bathroom for all their toiletry duties because they have to perform all these tasks by themselves.

Unfortunately, even with ADA standards, one size does not fit all and we each have our own unique set of needs speaking to equity and not equality. 

I understand why this makes it so challenging for hotels. One specific example – many of the new lower beds in hotel rooms that are in excellent for manual wheelchair users are actually terrible for me because the bed is too low for my caregiver to transfer me. It hurts their back, so I actually prefer high beds because I have a seat elevator that I can adjust. 

Well, I don’t prefer high beds, but my caregiver certainly do.  If I don’t keep them healthy then they are not going to be able to help me.  I recently just learned of a friend who actually brings their Hoyer lift to pick them up into the hotel bed, but with many of the new lower beds that have a solid frame on the bottom they cannot roll these specialized lifts to pick them up under the bed.  This is a huge problem.  What do you do?  Well, I’m not quite sure, but perhaps have different bed options?  Naturally, these options have to be cost-effective for the hotel, but equitable for their clients as well.  A tricky situation to say the least.
Every experience I have, adventure I go on, or endeavor I engage in – I consistently have to adapt to the unknown and make a plan of action.  

This is actually an unusual blessing because it forces me to be creative, think outside the box, and adapt to situations I may not have seen coming.  This is tremendously helpful in my professional life in so many of us with disabilities, as I mention time and time again, are some of the most creative problem solvers you will ever meet!

image of garlic with a slice missing and an orange put in with the saying "don't force yourself to fit in somewhere where you don't belong"

Pin It on Pinterest