Why Are Wheelchair-Users Still in the Dark Ages? – Erik Kondo

Over the years, we have seen dramatic improvement in the development of artificial limbs for amputees. Prostheses have progressed from wooden stumps to high tech devices that enable to user to closely mimic and in some aspects exceed the performance level of his or her original limb. On the other hand, why has mobility development for wheelchair-users proceeded so slowly, leaving them comparably in the Dark Ages?

While it is true that the military has driven large investment into the development prosthetic limbs as opposed to devices for wheelchair users, I am proposing another reason. In my opinion, there is no consensus of what a high level of mobility would look like for a wheelchair-user. In comparison, designers, manufacturers, patients, the medical community, and the public are all in agreement as to what amputees’ need in their prostheses. They want and need an artificial limb that mimics his or her previous limb in terms of functionality and appearance. There is a clear vision and goals. There are definite parameters for testing.

But when it comes to wheelchair-users, there is no consensus. What does a high mobility wheelchair-user look like? Is he or she “walking” or is he or she using a wheelchair? What are the parameters for testing functionality? What should this person be able to accomplish in his or her device? What about the person’s innate and developed capabilities? Where do they fit into the overall scheme of the person’s mobility?

Without a definite direction, development of mobility devices literally stumbles around as different groups haphazardly create devices with little input from the majority of wheelchair-users and don’t cooperate with each other. Many designers/manufacturers seem to think that consulting with one or two wheelchair-users is sufficient to understand all wheelchair-users. There are no guidelines for best practices or goals to be achieved. The result is a fragmented industry that moves in fits and starts.

Many wheelchair-users themselves don’t know what they want. They have the same problem of not knowing what high-level wheelchair mobility looks like. At any given time, in any city in the world, you will encounter thousands of people walking around for every wheelchair-user you see. And those that you do see, are likely to be pushed, be in a clunky wheelchair and exhibit a low level of personal mobility. Many newly injured people with paralysis are psychologically constrained to the able-bodied societal paradigm that only equates true mobility with walking.

Therefore, they think that only something that enables them to stand and simulate walking represents mobility even if they literally move at a snail’s pace.

The situation is complicated by the fact that wheelchair-users from birth and/or long-time wheelchair-users have been deprived from high-level mobility for so long that their inherent human balancing/neurological mobility systems have deteriorated from lack of use or have never been developed in the first place. When it comes to these aspects of the human body, if you don’t use it, you lose it, rings true.

Solving this problem begins with setting some parameters about what high performance mobility and low performance mobility looks like for wheelchair-users. We all know what an expert skier looks like, and we have no problem spotting a beginner. Why is it that people are unable to tell the difference between a high performing and low performing wheelchair-user relative to the person’s level of disability?

By gathering metrics, setting standards and expectations for mobility performance, everyone involved in the disability industry, along with people with disabilities would have a clear idea of what to strive for. For example, if a certain class of wheelchair-user can average a speed of 5 MPH, and someone comes up with a mobility device that can only go 1-2 MPH, then no matter now “cool”, or innovative his/her device is, it provides a low level of mobility performance in terms of speed. It may have other benefits, but regardless, it provides substandard mobility and should be categorized as such. A device that enables an average speed of 7-10 MPH would be categorized and accurately described as providing above average speed.

For example, high heels and platform shoes are mobility devices that some people use when walking, yet nobody confuses their level of mobility performance with a sneaker. The able-bodied world is filled with metrics and standards for comparison. In contrast, the world for people with disabilities is devoid of them. It’s not that the bar for performance is low, there is no bar at all.

Raising the overall level of mobility for wheelchair-users begins with gathering data, creating metrics, and setting standards, so everyone will have a clearer direction of where to go, and what it looks like when they get there. The template to follow already exists. Use the same methodology that is applied to amputees which is derived directly from the able-bodied world.