Traveling with an Invisible Disability

[VACTERL]

I am female, 40, and identify as semi-disabled, due to VACTERL association (https://rarediseases.org/rare-diseases/vacterl-association/). VACTERL affects everyone differently. For me, for the most part, I can live my day-to-day life relatively normally, with the exception of flare ups or episodes that are unpredictable. These flare ups usually do not require any special equipment or space to manage, but they can leave me incapacitated for several hours at a time.

 

To achieve this relative "normalcy" that minimizes the flare ups, I have medical management I do on a daily basis, that requires me laying prone on the bathroom floor, and while not required, an accessible showerhead is certainly helpful. I do not currently have any significant mobility issues and do not require the use of a mobility aid, but am developing osteoarthritis and stiffness in my knees and hips. For the most part, I would consider my disability "invisible."

I really enjoy cruising. My last two cruises I booked regular cabins and while I managed, it was definitely challenging to be able to perform my medical management both from maneuverability and physical space standpoints, and more significantly from a personal privacy standpoint. I understand that accessible cabins are primarily designed for those in need of mobility aids, but the extra floor space in the bathroom would make a massive difference to me. However, I've watched people on this forum ream those who aren't "disabled enough" that they see book accessible cabins. If I book an accessible cabin, I don't want to deal with confrontation and angry people for making a decision related to a condition they won't be able to "see."

 

I'm interested in general feedback on this issue I am struggling with. Thank you. 

Edited April 18 by VACTERL

[FOPMan]

I am not sure about how clean the bathroom floors may actually be. I'm not suggesting they are not cleaned between passengers, but am unsure what products are being used at this point.

 

As a general perspective, if you have need of the room's modifications due to a disability, that should not be a barrier to reserving/occupying the space.

 

There are an extremely limited number of accessible cabins. Many of us cannot cruise without having an accessible cabin- it's all or nothing. I use a custom power wheelchair and cannot walk/stand/step without assistance. A shower- or any portal- with a step- is an insurmountable barrier.

 

My personal take is to try to make the smallest footprint possible and take only what is needed, leaving opportunities for others. You need to strike a balance that you can live with.

[klfrodo]

Have you heard of this program? It might be of some help with travel.

 

Air travel and the Sunflower (hdsunflower.com)

 

 

[gadaboutgal]

A pool towel on bathroom floor would be an idea to assist you.  Your cabin steward will be able to supply you as needed