Let’s start a movement!

How I got my local hospital to make accommodations for me

by Diane Pappas, Gloucester, Massachusetts

You don’t realize there is a problem with something until you experience it yourself.  Recently, my husband and I stayed at a hotel in Boston and I made a note on the reservation that I needed a walk-in shower as opposed to a shower/bathtub arrangement.  I mentioned I was not in a wheelchair but had some mobility issues.  The hotel put us in a lovely, wheelchair accessible room which I quickly realized was not accessible for me.

While it did have a barrier-free shower, the toilet and bed were so low for me that it made my stay there difficult.  The toilet had a grab bar but it was too low and there was a huge painting right above it, which was in my way as I needed to push off from the wall.  The bed, which was lower for easy transfer from a wheelchair, was too low for me to get out of on my own.

I have muscle weakness in my adductors and hip flexors so it is very difficult for me to get out of a chair that is lower than 24 inches.  I’m 58 years old and this has been a more recent development in just the last couple of years, so I am still finding ways to adapt.

Here’s another example. I recently had to go to my local hospital for an x-ray and realized that the waiting room chairs and the changing rooms were not accessible for me. My husband had to come with me to lift me up out the chairs and help with changing. I don’t like having to depend on him for simple things like this because I want to remain independent and in control for as long as possible. On the other hand, I certainly don’t want to ask a complete stranger to pick me up out of chair, so I need these places to be accessible for me.

When I explained my situation, I was put in touch with the manager of patient experience for the health care system that manages my local hospital. It’s part of the Beth Israel Health care system in Boston. She was amazing and wanted to know what they could do to help improve the accessibility of the services I normally use. She even took the time to watch my daughter’s documentary on FSHD, (Lexi Pappas – Growing Up With FSHD) and to visit the FSHD Society website.

I previously explained to her that I needed a higher chair in the waiting rooms and even adjustable-height exam tables because I cannot get up that little step at the end of the table. I know that there are higher chairs for waiting rooms because I have seen them.  I can’t be the only person that has trouble getting out of a chair, and she agreed.  She also said that she would never have thought about this unless someone like me brought it up.

This goes to the point of this blog – people who don’t have our difficulties, don’t know there is a problem until it is brought to their attention.  Within a month, I heard back from another member of Lahey Health, that they are in the process of finding chairs that match the current chairs they have.  They will add these chairs to the hospital waiting rooms and at the breast health center I use in a neighboring town.  The adjustable exam tables are a little harder because they are more expensive, but they are looking into it.

I am just blown away that my voice made a difference. Your voice can do the same. Don’t be afraid to bring it to your doctor or hospital’s attention that their facilities are not accessible to you. These places are supposed to be accessible to everyone. There is no need anyone should have to be anxious about a trip to the doctor or hospital.

As FSHD Society’s June Kinoshita, director of research and patient engagement, said in an email to me, “Imagine if everyone with FSHD brought this issue to the attention of their healthcare provider…maybe, we can start a movement!”

Let’s start that movement.