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Wheelchair Science: The Problem of the Not-a-Wheelchair-User, Part I – Erik Kondo

Stock photography of a wheelchair user.

I have encountered a large number of manual wheelchairs users who are dissatisfied with the setup and function of their wheelchair. Therefore, I think it useful to examine why this situation exists. Afterall, the wheelchair has been in widespread use for more than one hundred years. It seems logical that the seating and dynamics of wheelchair use would have been figured out by now. Afterall, the manual wheelchair is a relatively straight forward mechanical device. What might be the problem?

A wheelchair is a personal mobility device, and a bicycle is a personal mobility device. Since most people are familiar with bicycles, let’s think of the wheelchair optimization problem in terms of bicycles.

Imagine, you are Not-a-Bicycle-Rider, you go to the bicycle store to buy a bicycle. All the bicycles for sale in the store were designed by people who are Not-Bicycle-Riders. Your salesperson is Not-a-Bicycle-Rider. The repair/service people in the bicycle shop are also Not-Bicycle-Riders.

After purchasing your bicycle, you learn to ride at a bicycle skills clinic taught by a coach who is Not-a-Bicycle-Rider. The coach’s understanding of bicycling dynamics comes from reading the conclusions of scientific research papers written by researchers who are Not-Bicycle-Riders. Many times, the participants in the research studies are also Not-Bicycle-Riders who are tested on simulated bicycles being ridden in simulated idealized bicycling conditions.

The situation I described sounds ridiculous. And it is in the world of able-bodied people. But for wheelchair users, the overriding influence of the Not-a-Wheelchair-User is inescapable.  In fact, it gets worse. Wheelchairs are heavily regulated by government entities staffed by Not-a-Wheelchair-User(s). Health insurance payments for wheelchairs must be approved by insurance companies run by Not-a-Wheelchair-User(s). Societal perceptions of the mobility needs of wheelchair users are shaped in part by stock photography and Hollywood films that feature Not-a-Wheelchair-User(s) pretending to be wheelchair users. The list goes on.

In the bicycling world, experienced and accomplished experts have a tremendous amount of influence within the industry. No scientific researcher would ever conceive of doing scientific bicycle research without the close involvement and review of knowledgeable bicyclists.  No bicycle skills coach would teach bicycle skills that they themselves cannot do (or don’t understand). Nobody would buy an expensive bicycle from a salesperson who doesn’t know anything but the bare basics of bicycle riding. Yet, this situation is considered perfectly acceptable for wheelchair users.

Why are so many wheelchair users in poorly fitting and badly designed wheelchairs? In a nutshell, due to the outsized influence of the Not-a-Wheelchair-User in the wheelchair industrial complex, and the undersized influence of knowledgeable wheelchair users. I am specifically using the term knowledgeable wheelchair users here. It takes more than just wheelchair lived-experience to understand wheelchair dynamics. Just using a wheelchair doesn’t mean you know a lot about the functional dynamics of wheelchairs. Exactly the same as bicycles. There are expert bicyclists, and there are those people who have ridden bicycles for years, yet still don’t know much about how they actually work. Just like bicycle riders, wheelchair users are not a monolithic group. It's not rocket science, it’s wheelchair science.


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