The Importance of Improvisation
Mobility aids help many of us with SMA live as independently as possible. We use wheelchairs so we can get around as long as where we are going is accessible.
There are times when accessibility isn’t guaranteed both in the home and out and that is where improvisation becomes an important life skill.
Improvisation means making or doing something that was not planned and for those of us who need accessibility that is not always there, it is something we begin learning early in life.
Bathing in a bathroom that is not accessible
Bathing is one of the areas where I have improvised the most. I have lived in many homes where the bathrooms were not fully accessible and even if the toileting area was, the bathtub or shower definitely was not.
Body wipes and baby wipes have been a tool I use daily to keep my body clean when I am unable to shower. However, when I lived where I could not shower, there was also the dilemma of how to wash my hair and how to get my body really clean with just bed bath wiping.
When I lived in a house that did not have a door to the bathroom my chair could fit through, I had to go into the yard and use the water hose to wash my hair as I leaned back in my chair. It was freezing most of the time, but it did the job.
Inflatable sinks and tubs have been helpful
Then, I discovered that you can buy an inflatable sink that you can wash hair in while laying in the bed and they have a hose that drains into a 5-gallon bucket which made washing my hair easier.
For bathing, my aunt gave me an inflatable portable bathtub that was not too wide for the legs of my Hoyer lift to fit around and lower me into. My aide ran a water hose attached to the sink and filled the tub with warm water that way.
For draining, it had a drain hose attached that we ran from the living room out the front door. It was not ideal, but it worked!
Using the skills I learned previously
My home now is fully accessible and the bathroom is the best room of the house. But I still have days when I don’t feel like getting in the shower.
I use my skills learned in the days when showering was hard and I take off my headrest, put a rain poncho over the back of my chair, lean my chair back, and my aide washes my hair so the water runs off safely avoiding the back of my chair.
Planning ahead to use my lift on the go
As I use lift transfer exclusively, I have found myself needing to pre-plan trips so I know which areas I can take my manual Hoyer into the bathrooms.
I have carried my lift and sling through Renaissance Fairgrounds and Zoos and Gas station bathrooms. As long as there is room, I bring my own equipment.
However, I also go to Broadway musicals, concerts, and shopping trips where accessibility for my lift is not possible.
Improvising when I need to use the bathroom in public
When this happens, I am ready to improvise how I am able to use the bathroom when on the go with a portable urinal.
I am not independent enough to use one on my own. But with the help of my aide and having these tools, I am able to use the bathroom anywhere I can lean my chair back.
Even when we are ready to improvise a solution, some planning seems to always be needed beforehand.
So perhaps, as mobility-impaired individuals seeking independence in sometimes inaccessible situations, we should be considered the best of the Scouts in that we should "always be prepared..." to improvise when needed.
Which emotional aspect of SMA do you find most difficult?