The Case for DIY Innovation on Planet Disability - Erik Kondo



Let’s face it. It’s not working. Mobility devices for wheelchair users have seen only incremental improvements in their design and functionality over the years as compared to devices for the able-bodied population. While these improvements are useful, there is still much that could be done. The problem is that Disability Economics does not function the same way as it does for the general population. As a result, innovation happens slowly.


For example, a manual wheelchair is in many ways similar to a bicycle. Yet, the bicycle keeps getting redesigned for the better with more variations and accessories constantly being created. The same is not true for the wheelchair. And “Why hasn’t all the new light weight and efficient technology for electric bicycles and other devices been seen in power wheelchairs”?


The easiest way to see how Disability Economics differs is by a case study of bicycle ride sharing. Ride share companies using bicycles and scooters are popping up all over the world. The economics work because the bikes and scooters can be manufactured cheaply in large quantities. Most able-bodied people can ride them without needing customization - they just get on and go. Liability insurance is widely obtainable. The insurance cost is a small percentage of the overhead. People crash and fall on a regular basis. These unfortunate events are generally accepted by the companies and public as the natural risk of biking and scootering.


Now let’s imagine an adaptive bike share for people with disabilities. It is highly unlikely to make a profit. In fact, its only hope for existence is as a non-profit that survives on donations, grants, and/or government funding. The problem is that despite the large population of people with disabilities, there are not a lot of people with disabilities in any given location at a given time. And all of these people differ widely in the type of bikes that they are capable of riding (assuming they can ride an adaptive bike).


The economics don’t work for the following reasons:


1. The cost of adaptive bikes to acquire and maintain is very high as opposed to those for the able-bodied population [1].

2. There would need to be a number of different types of adaptive devices to serve the wide variety of people with disabilities.

3. There are not that many people with a given type of disability in any given location. Therefore, the number of daily rides would be low as compared to the able-bodied population.

4. Insurance rates for adaptive bikes are likely to be significantly higher than for the able-bodied population.

5. People with disabilities are statistically the poorest demographic due to the combination of high expenses and low income as compared to the able-bodied population [2].


What this example shows is that the factors that create success for businesses for the able-bodied population do not apply to Disability Economics. The factors involved in Disability Economics are effectively an alien ecosystem. Let’s call this ecosystem Planet Disability.


On Planet Disability there exists an 800 lb. gorilla, named Igor, AKA the insurance industry combined with governmental regulation. Igor influences everything that happens on Planet Disability. When people pay for mobility and medical related products, Igor must approve of both the payment and the device. If Igor doesn’t like a device or feels it is not “necessary”, he doesn’t pay for it. As a result, companies are constantly seeking Igor’s approval as part of the innovation and manufacturing process. Without Igor’s approval, companies must depend on the relatively poor inhabitants to pay for items. These inhabitants have been conditioned to accept products that are typically both expensive and have a low level of function. They have come to expect one-size-fits-all products that don’t really met their needs. Those that are able, buy and use them anyway, since they know that there are few or no other options available.


In order to obtain Igor’s approval, companies go out of their way to establish the medical necessity of their product. As a result, few of the products on Planet Disability are intended for fun or high performance since Igor wouldn’t approve of them otherwise. Innovation on Planet Disability is stalled since once a product makes to the “good enough” stage, there is little incentive to improve it. Competition is minimal since new companies are faced with the high risk of developing a product that doesn’t meet Igor’s approval. Thereby creating a high barrier to entry to the marketplace.


And in many cases, Igor doesn’t really understand the products and the needs of the inhabitants of Planet Disability. He is set in his ways and not flexible to change. He is also inconsistent. Sometimes, he will pay an exorbitant amount of money for a product that would sell for far less off Planet Disability. Other times, he denies payment for reasonably priced and useful products. His fickleness makes it hard for manufacturers to survive and prosper. Many soon give up and seek the more hospitable and profitable economic ecosystems found elsewhere.


Finally, there are the designers and engineers of the products for Planet Disability. They don’t live on the Planet. They live off-world and observe the inhabitants from afar. They come to their decisions on what the inhabitants want and need without deeply interacting with them. They tend to sample a few of the inhabitants in order to draw conclusions about the desires and behaviors of all of the inhabitants.


For the reasons above, traditional forms of product innovation typically don’t succeed on Planet Disability as evidenced by the results. Therefore, encouraging innovation will require a different set of rules to go by. Where the able-bodied world rewards inventors with patents and encourages proprietary methods and procedures. Planet Disability requires Open Source and the Sharing of Ideas to spur innovation.


Innovation is most likely to occur at a grass roots level by the inhabitants themselves. Since it is likely that non-medical solutions will not be created for them due to Disability Economics, they will have to resort to forms of DIY. Instead of being secretive and hoping to be rewarded by selling the next “Big Idea”, inventors need to be encouraged to interact and learn from each other. They need to work together towards the common goal of making affordable and useful products. Open Source DIY will have to replace patents and trade secrets as the default methodology.


Igor needs to change his behavior so that he has less influence on prices and enables the development of new products, and the inhabitants of Planet Disability must learn to set higher standards for the products that they use. They need to encourage their community to innovate. They need to stop settling for mediocre products that they buy only if Igor pays for most of it. Lastly, designers and inventors must spend sufficient time on Planet Disability to understand how to create products that provide solutions to real needs as opposed to focusing on solutions arising out of their personal biases and limited viewpoint.


Footnotes:


[1] The average cost of a bicycle in the United States is $350. The average cost of a handcycle is $3,500 or more.


[2] In 2016, the median earnings of people with disabilities ages 16 and over in the US was $22,047 about two-thirds of the median earnings of people without disabilities, $32,479.

https://disabilitycompendium.org/sites/default/files/user-uploads/2017_AnnualReport_2017_FINAL.pdf


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