The Five Failures of Wheelchair Provision – Erik Kondo

The Five Failure of Wheelchair Provision

As a wheelchair user for decades, I have observed how the wheelchair provision system works on a worldwide level. I have come to the conclusion that the wheelchair provision system when viewed as a whole is systemically flawed. These failures can be seen throughout the world to different degrees. They vary in severity depending upon location, the relative wealth of the country and the financial resources of the wheelchair user.

Systemic failures do not imply that ALL wheelchair users have problems with their wheelchairs. Many are satisfied with their wheelchair. Systemic failures mean that an unacceptable percentage of wheelchair users encounter one or more of these problems. And these problems keep recurring.

The failures are the result of how society produces and distributes wheelchairs to those who need them. Wheelchair Provision includes both for-profit and non-profit models. The failures of wheelchair provision are driven by economics. These are not technological problems which innovation will solve. They are the result of low societal priority on the importance of wheelchairs and the lives of people with disabilities.

#1. Wheelchair Deserts

A Wheelchair Desert is a geographical location where there are insufficient wheelchairs available for people who need them. In a Wheelchair Desert, there are people who simply cannot acquire a wheelchair because they are not locally available. Wheelchair Deserts are typically located in remote areas of low resource countries with minimal (or highly expensive) international commerce.

In a wheelchair desert, people who cannot walk may spend decades immobile on a bed or mat. They may never acquire a wheelchair. They are shut away living a life excluded from society. If you require a wheelchair for mobility, there a few worse places to live than in a Wheelchair Desert.

#2. Inappropriate Wheelchairs

Unlike in a Wheelchair Desert, there are wheelchairs available. But these wheelchairs are typically inappropriate for the local environment. This situation typically occurs in low resource countries (LMICs) where manual wheelchair users are using cheap imported hospital style wheelchairs. These wheelchairs are usually mass produced in China or India. They are designed and set up in a manner that simply doesn’t work on the rough terrain or indoor environments commonly encountered.

It is common for the inappropriate wheelchairs to be shipped in large numbers, dropped off and mass distributed by well-meaning non-profits located in the United States or Europe. Regardless of intention, the result is millions of wheelchair users with a much lower level of functional mobility and independence than they could have (if they had an appropriate wheelchair).

Note: An Inappropriate wheelchair can also be a manual wheelchair that is used by a person who requires a power wheelchair. It also refers to ill-fitting wheelchairs such as a child or small adult using a wheelchair that is much too big and heavy for them.

#3. Inadequate Wheelchair Repairability

Wheelchairs are mechanical devices that need to be maintained and repaired on a regular basis. This situation is no different than bicycles, automobiles, other any other type of mobility device. But unlike bicycles and automobiles, wheelchairs are notoriously difficult and expensive to maintain and repair.

As a result, many wheelchair users are using wheelchairs that are in poor condition.

In low resource countries, it is common to see people in wheelchairs with ripped and sagging upholstery, missing footrests, wobbly front casters, worn-out tires, broken push rims, and cracked frames. Power wheelchair users also have great difficulty repairing motors and replacing batteries.

This problem is a combination of wheelchairs that are designed to be thrown away rather than repaired or designed to be difficult to repair without access to expensive proprietary parts. These issues combine with supply chain economics that makes importing parts expensive and scarce. Inadequite Wheelchair Repairability occurs in both low resource and high income countries. In HICs, while wheelchair repair is available, it is typically highly expensive and time consuming.

You simply have to look to the bicycle industry (bicycle provision) to see what a high level of repairability looks like. If wheelchairs could be repaired as easily as bicycles, this problem would not exist.

#4. Wheelchair Profiteering

It is commonly known that in business (and in life) that incentives drive the behavior. The Legacy Wheelchair Industry is now dominated by private equity owned multi-national conglomerates that operate in high income countries. Their incentive is to maximize profits which leads to behaviors that are detrimental to the well-being of wheelchair users.

One form of Wheelchair Profiteering is to design wheelchairs to be expensive and have high profit margins rather than to be affordable. The wheelchairs are designed to use proprietary parts and expensive materials that are costly to obtain. Wheelchairs are designed with planned obsolescence in mind (such as purposely embedding into the frame difficult to repair/replace items such as caster forks with cheap bearings (which will knowingly deteriote due to corrosion) to encourage complete wheelchair replacement rather than component repair.

The Legacy Wheelchair Industry promotes the addition of costly over-engineered accessories in order to increase profits. These accessories are deemed “medically necessary” to induce insurance reimbursement. Affordable wheelchair models are under produced and marketed in order to steer customers into buying “high-end” wheelchairs at inflated prices.

Wheelchair manufacturers are able to engage in these activities due to their power over their customers. Wheelchair users have little choice but to purchase the products presented to them by sales representatives and Assistive Technology Professionals. Legacy Wheelchair Manufacturers engage in monopoly practices to squash small companies looking to produce affordable wheelchairs. The list goes on.

#5. Low Wheelchair Literacy

Generally speaking, despite being around for over one hundred years, wheelchairs are not well understood by most people. I think this is because of the heavy negative stigma associated with wheelchairs and people with disabilities.

“Wheelchair knowledge” is officially held by the medical community and Assistive Technology Professionals (ATPs) who typically are not wheelchair users themselves. They rely on flawed scientific studies with misleading results arising from the common use of able-bodied participants in research. Their personal experience comes from dealing with medical patients who are new to wheelchair use rather than from learning from long-time wheelchair users with effective mobility.

Important “stakeholders” such as the wheelchair manufacturers, medical professionals, researchers, government regulators, engineers, etc. don’t have wheelchair life experience. Yet they don’t seek out the input of actual wheelchairs users who may challenge their assumptions and “expertise” status.

The result is that many wheelchair users (but not all!) are not able to optimize their wheelchair mobility.

• They are less mobile than they could be.

• They spend more money than they need to by purchasing expensive accessories they don’t actually need.

• They are unaware of affordable wheelchair options and devices that would enhance their mobility.

• They use wheelchairs that don’t work well for them, but they don’t realize it. They lack the basic wheelchair skills and physical conditioning that would enhance their mobility.

• They lack the knowledge to optimize their wheelchair for mobility.

• They don’t have basic wheelchair maintenance and repair skills or the understanding of how repairs can be made (by others).

This societal lack of wheelchair literacy and low interest in wheelchair based mobility enables Wheelchair Profiteering. It is an integral part of Inadequite Wheelchair Repairability. It underpins the widespread problem of Inappropriate Wheelchairs and Wheelchair Deserts.

Conclusion

I have described the Five Failures of Wheelchair Provision separately, but they are deeply intertwined. It may seem that the system failures in wheelchair provision are too difficult to solve. But by looking at the success of the bicycle industry, society has a real life template to follow. While the economics of wheelchairs and bicycles are not the same, the bicycle industry shows what effective, widespread, and affordable wheelchair provision could look like.