The Travelling Bathroom Dilemma: Request for Submissions

                  The Travelling Bathroom Dilemma

 

Request for Submissions 

 

Stories about Inaccessible ‘Accessible Washrooms’     Editor:  Emma Pivato

 

Stories 2 to 6+ pages in length will be considered.  You can talk about your worst nightmare story of being stuck in public without a washroom that works for you, or you can just talk about the daily grind and all the things you don’t get to do because of this problem.  Also talk a little about yourself or your child:  who you are, what you enjoy doing, what you would like to be doing in terms of travelling or socializing or work or school, if not for this problem.  If you are parents, you can talk about the effect on siblings and the extra burden this bathroom problem has placed on you and your partner, as well.  

This book of stories will bring this problem out of the shadows and hopefully inspire some wheelchair company to find an effective solution, as discussed below.   I am being supported by The Gateway Association for Community Living in Edmonton, Alberta to produce this book.  

 

 

What is the problem that nobody talks about?

 

Some adults and children cannot use a regular toilet because of their level of physical disability.  They require physical transfers and adapted seating to be stable enough to carry out bathroom functions.  Appropriate arrangements can be made at home but not in public washrooms, including ‘accessible’ washrooms. 

 

Others, because of their high level of physical and/or cognitive disability, do not use toilets at all but rely on diapers.  However, lifting is still an issue and change tables are still required.  

 

Only in very rare cases can a change table be found in accessible washroom stalls.  Hardly ever would there be enough room for one.  And as for adaptive seating arrangements, each person with this high level of physical disability requires a different size and type of structural support so providing that for the toilets in accessible washroom stalls is not possible.  

 

How then can adults and children in this situation and the families of these children enjoy full involvement in community activities or travel opportunities?  Many people I know have tried.  My husband and I have tried.  And all of us have the back problems to prove it.  Is there any solution? 

 

 

About 35 years ago I thought of a possible solution:  an adapted wheelchair with a built-in commode unit.  With this chair and the ones that followed it we were able to travel more freely with our daughter than ever before and to go out for whole days or evenings with her. 

  

Alexis and her father in Mexico in the Dirk Kos adapted wheelchair

 

         This wheelchair with a built-in commode was developed from the ground up by Dirk Kos, a clever, local Edmontonian who had made it his mission to develop adaptive equipment for children with disabilities.  However, he was not trained as an engineer and occasionally a wheel would fall off or spokes would break.  We carried a bag of spare spokes with us when we travelled and enjoyed many trips with Alexis but the lifting and change table issues were still there and eventually it became too much for us.

 

 

Invacare Recliner Chair - Tangent Model

  

  I wondered if it would be possible to build a lift and modified toileting sling into a reclining wheelchair, thinking I could use the chair in its reclined position as a change table. 

In 2010 our first prototype of this proposed model was created by Tangent Engineering in Calgary.  It is pictured above.  The lift works very well, and it is completely safe and balanced in the lift position.  But it still had certain limitations 

               

Quickie Upright Wheelchair - Tyler Model

In 2012 I worked with Tyler Engineering in Edmonton to develop a second prototype – and later a revised version of that.  The revision, in 2014, involved the incorporation of a special hard sling that allowed for cleaning and brief changing with the client in the lift position.  

This chair is balanced and easy to maneuver but there is still room for improvement.  It does not lift as high as its predecessor, and this reduces the working space available. Still, it works quite well.    

 

 The Tilt-in-Space Chair

After we used the Tyler chair for a couple of years, our daughter experienced further physical deterioration due to her neurological condition and she finally required the tilt-in-space chair that many others who share her level of physical ability have.  Alexis’ tilt-in-space chair tilts back all the way to a horizontal position if desired.  At the same time, the front leg portion raises up, which is what differentiates it from regular recliner wheelchairs.  

I took the new tilt-in-space chair to Dr. Tyler and after careful examination he determined that it would be possible to build a lift, hard sling and commode unit into it as well.  However, he would need to develop a new set of specifications and the cost of doing that and building the new prototype into the chair would be about $100,000.00.  That was more than we could manage.  Also, I was realizing at this point that many of the people who could benefit from an adapted wheelchair such as I have been describing would need to be in tilt-in space chairs.  Therefore, I saw no point in attempting further refinements on the upright adapted wheelchair Dr. Tyler had previously developed.  And at that point, I finally had to let go of the project.  

 

What Now?

 

It has required a lot of time, money and energy to get this far in the adapted wheelchair project, and there have been many barriers to overcome along the way.  The chair is still not perfect, but ‘proof of concept’ has been established.  A lift and commode unit can be built into a wheelchair and that wheelchair can operate safely and be constructed in such a way that its dual functions are not obvious to the casual viewer.  

            This is as much as I can do and a wheelchair company with the necessary expertise and financial resources needs to take this project over because such a chair could improve the lives of many people.  But for that to happen requires some evidence that a need exists, and that a market also exists.  And that is where a book of stories would be very helpful.

The potential market for such a product is bigger than we might realize because this is just not a subject that gets talked about.  Severe physical disability can come about through spinal injuries, paralytic strokes, neurodegenerative disorders or even severe arthritis.  Affected people who previously enjoyed a regular lifestyle, able to travel freely and to exercise their bathroom functions in privacy and with dignity, now find all that lost to them.  People who could stay in their own homes with support end up in extended care settings because of this problem.   People in extended care settings who are still continent upon entry can be labelled as incontinent within a couple of weeks because staff do not have the time, energy and large bathroom spaces needed to do all the lifting and transferring required so they can access bathroom facilities as needed. 

I want to include stories from people in all these areas, but I particularly want to help parents to better meet the needs of children dealing with this problem.  Hopefully the book will provide the incentive needed to persuade some wheelchair company to seriously take this project on so that all of us can be free to travel and participate joyfully in community life without the nagging fear of the next needed toilet or change break.   

 

We can’t change the reality of our own or our child’s disabilities, but we can do whatever is possible to make their lives and ours easier.  My life experience over the past 46 years of living with my daughter tells me that this kind of system change is only possible when we work together as a group.  My experience in working alone for so many years on the wheelchair project tells me that I won’t get any further on it without the help and support of others. 

 

Emma Pivato, Edmonton, August 28th, 2024                                   emmapivato.ca