The Early History:
Our daughter, Alexis, cannot see, talk, sit independently or use her hands functionally. Therefore, we have been unable to develop any formal communication system with her and need to attend to all her personal needs.
Although Alexis can do nothing else for herself or show us in any other way that she understands us and act or think independently of us, there is one area of exception. From nine months of age Alexis showed some understanding of the toileting process and by 18 months she was quite reliably trained.
This training process gave us a way of connecting with her, valuing her, feeling close to her and we could see by her responses that it pleased her to please us. One could say that we bonded with her around her toileting successes, strange as that might sound.
When she was a baby and a young child, I could lift her easily, place her across my knee to dress and undress her and hold her on her little potty while I sat behind her supporting her with my arms. But as she grew this system no longer worked and we went through a succession of specially constructed commode chairs and resorted to using change tables to dress and undress her.
This system continued to work at home and even at school where these facilities could be provided but it did not work in other public washrooms in the community and that very much restricted us as a family. No matter where we went, we always had to come home in a couple of hours so Alexis could use her specially adapted facilities.
Through those early years we developed various ways of coping, but none provided an entirely successful solution. For two summers in a row we were able to keep Alexis’ portable toilet seat in the First Aid Room at the West Edmonton Mall Waterpark and use the cot they had in that room as a change table. That was back in the ‘80’s as Alexis is now 41 years old and one cannot imagine them allowing such a system now.
But she spent two very happy summers enjoying the rides and wave pool at the mall. Other than that it was very hard to lug her toilet seat around with us although we did take it with us on the few occasions we managed to go on short vacation trips with her. Joe sent his father, Tony, the specifications for the triangular wooden support seat we had at home that fit over the toilet and Tony built a similar one for her in Toronto so we managed to visit there with Alexis a few times until she outgrew the seat. But generally speaking, the whole toilet business for Alexis was a major stumbling block in our family life.
A Possible Solution:
In 1988, when Alexis was 10, I was working as an assessment psychologist for Edmonton Public School Board in their special unit developed to meet the educational needs of children with multiple and severe disabilities. Our mandate covered Edmonton and the North Eastern section of Alberta and one day, on my way to St. Paul, I spent the entire drive thinking about the toileting problem.
Alexis was at that point too big and needed too much upper body support for her to be able to use anything but a specially adapted, full sized commode to meet her toileting needs so we were becoming more and more housebound as a family and she was not spending the amount of time in community that she needed to spend. Basically, she needs as much support in her commode chair as she needs in her wheelchair, I said to myself. And then it hit me! If Mohammed won’t go to the mountain, the mountain must come to Mohammed.
I spent the rest of that trip in a state of bemusement considering both the possibilities and the kind of reaction from others I would get to this rather unconventional solution, i.e. turning Alexis’ own wheelchair into her portable commode! I was sure that the public response would be ‘Yuck’!
And I immediately began marshaling my arguments:
- There is a difference between a disability and a handicap. A person is disabled if he or she cannot walk or see. But that person is only handicapped if there is no access to a wheelchair and curb cuts in the sidewalks or no access to braille. Isn’t lack of bathroom access just as much a restriction on her freedom as lack of a wheelchair or curb cuts would be? I asked myself.
- Rights – The rights to life, liberty and security of the person are enshrined in the Canadian Bill of Rights (1960, Section 7). Does this not include Alexis’ right to access bathroom facilities, wherever she is, a right the rest of us take for granted? I asked myself.
- Hygiene – Public washrooms are places where we should be particularly careful as we are confronted with more and more resistant pathogens. One could argue that there is actually an advantage to carrying your own toileting facilities with you, thus avoiding contact with public toilet seats! Placing a commode seat beneath the thick padded seat cushion of an adapted wheelchair should not pose any health risk. This is especially true now that disinfectant wipes are readily available and easily transportable.
The First Wheelchair/commode
When I returned to Edmonton I called the seating clinic at the Glenrose Hospital to make an appointment for Alexis as she was in need of a new wheelchair. I requested a reclining wheelchair as she was gradually becoming stiffer, following a bout of status epilepticus at age five. At age 13 she was to end up in hospital with a second bout and become still more disabled but that was still ahead of us at that point.
The seating technician assigned to us, Peter Jarvis, listened sympathetically to my story about her toileting needs and my request that he build a commode unit in beneath the seat with a removable pot beneath it. However, he pointed out that the x shaped support bars supporting the seat did not allow clear access to a pot. I was crushed. Once again, I had run into a brick wall. My experience with the whole toileting saga up to that point in time was that whenever a window opened a door slammed. And, actually, that continues to be the case.
Peter took one look at my face, thought for a moment and then said that he might possibly have a solution. He created a plastic mold in an hourglass shape that was open and accommodating at the top but still fit between the crossbars. From this mold he was able to construct a plastic pot that was readily removable and easy to sanitize.
The chair worked wonderfully for the three years we used it before Alexis outgrew it. It could be lowered to a completely horizontal position so she could be easily dressed and undressed, and the wheelchair seat cushion readily removed. She was then returned to an upright position for toileting purposes and then the whole procedure was reversed. The only tedious part of this process was that the reclining function was manual, meaning that one needed to use a foot pump in order to return the chair from a horizontal to a vertical position.
I was sad to see that chair finally go but one element of it we would not miss. Alexis needed a small, soft toilet seat slightly raised in front in order to sit safely and comfortably. Peter crafted one out of soft rubber and spray painted it with a waterproof paint so it could be cleaned. The paint he used was black and every time Alexis used the seat we had to pick black flecks of paint off her bottom!
The Second Wheelchair/commode
The next reclining chair we received did not have a cross bar underneath and the reclining function was pneumatic meaning that it sprung back smartly into a vertical position with little effort on our part. The problem, however, was that it did not recline to a full horizontal position. Also, Alexis was becoming longer and heavier so her natural inclination was to slide forward when reclined meaning that it was very difficult to wiggle her back into the correct position for toileting once her clothes had been adjusted and the seat removed. However, size wise it fit her for a depressingly long time, so I had no recourse in terms of returning to the Glenrose and asking for a new chair.
The Third Wheelchair/commode
We suffered with this chair for a year or two and then I went to what was then Gold Care Solutions and asked for help to devise a new wheelchair commode chair that would work for Alexis. Again, I was fortunate to find a very sympathetic ear. The technician who helped me found a discarded reclining chair in the back, cut the cross bars out from under it and reinforced it in some way. Then he installed a commode unit beneath the seat. This was a wider chair than Alexis needed, and he designed a seating support unit for her as he had level 1 seating training. It was upholstered in pink vinyl due to a momentary lapse of judgment on my part.
This chair had the advantage of reclining to a completely horizontal position, so it functioned quite well as a built-in change table. It had two problems, however. The back was held in place by two hooks and when you undid them it literally fell back. This was fine going down as you could support it but lifting it back up was extremely difficult. The second problem was that the cross bars had been eliminated at my request so the chair could fit directly over a toilet. But I soon discovered that the toilet seats in ‘handicapped washrooms” where there was enough room to recline the chair, were raised and the wheelchair would not fit over them. We had to go back to using a pot.
The problem was solved less than two years later, however, when the chair was roughly tossed off a plane when our luggage was unloaded in Mexico. In the process it was bent out of shape and listed badly to one side.
The Fourth Wheelchair/commode
It was shortly after that that I met Dirk Kos, a clever man with his own shop who developed equipment for children with special needs in Edmonton at that time. He was not a trained engineer, but he had his own shop and took on the project of building a wheelchair for Alexis from scratch, designed specifically to meet her needs.
By this time Alexis was in her late teens and we assumed that she had reached her full adult size, although she was still relatively small, about 85 pounds and five feet one inch at that point. The chair was small and light and elegant, easy to maneuver and the pot beneath the seat cushion pulled out on drawer glides. Because the chair was not engineered it was subject to certain glitches, like a wheel occasionally falling off and spokes breaking frequently but despite this it worked very well and we took it back and forth with us when we travelled to Mexico and the mountains and Alexis was now able to access community venues much more readily and easily that she had ever done before. However, she was now big enough and heavy enough that the lifting was becoming a serious problem.
Alexis used the Dirk Kos chair for travel purposes for many years even as her regular wheelchair was replaced by the Glenrose when her seating needs changed but the time came when even for travel purposes it was no longer safe or comfortable for her. Also, the lifting was becoming impossible. It was time to look at a new approach.
Moving to the next step – the Alpha prototype
I began to explore the possibility of developing a wheelchair with both a built-in lift and a built-in commode. I was fortunate to get a small research grant from my university and settled on a Calgary engineering company capable of doing computer simulations. They developed the ‘Alpha prototype’ built into an Invacare wheelchair that reclined to a horizontal position.
The focus of this chair was safety, stability and versatility. It can lift weights up to 400 pounds and uses stabilizers on the back wheels to keep it from tipping in the lift position. It has a removable lifting frame that can be disassembled and stored in a bag behind the chair. The process is somewhat tedious but the lift itself works well and can lift the person with good clearance from the seat below.
Although the chair worked well, the lifting sling never did. This
was not the fault of the engineering company because the sling development was not part of their mandate. We purchased two lifting slings and developed two slings, all specifically designed for toileting purposes The last of these, developed by Joe who had the advantage of close familiarity with Alexis’ body mechanics, worked the best but it was still very, very hard to get her clothes back on when she was in the sling and suspended in the air!
An additional problem with this chair was that it operated on a crane system and the various parts of the hoist had to be disassembled and carried along on the back of the chair in a special sac. In addition, stabilizer bars had to be installed on the rear wheels every time the lift was employed to prevent it overbalancing. It was therefore somewhat cumbersome, and we found that, after all this effort, we were still not using the chair very much.
The Beta Prototype
One day, I took Alexis and the chair to an Edmonton engineer I had heard about. He examined the chair and informed me quietly that he could do better. I applied for and received a second small grant and he got to work. This Beta prototype does not lift as high as the first chair but is much more streamlined and far simpler to use (see picture below). It is also completely stable without the need for stabilizer bars and one person can safely manage the whole operation. In hospital settings when floor lifts are in use, Occupational Health and Safety Standards require that two staff be on site at all times.