Innovation and disability – Mark Brown

 

As a person with a disability, I am often told I have special needs. This may be, but to my mind, it’s more useful to say I have special problems.

This is not something I say aloud, of course. Saying that people with a disability have problems is seen to be being negative. It’s considered more polite to say “Mark needs a wheelchair” than “Mark can’t walk”. Indeed, I feel more comfortable hearing the former myself. However, language is powerful. Talking about “needs” exclusively may block our minds from discovering innovations.

I suspect I fell prey to this cognitive trap myself for many years. I was often told, that because of my disability, I “need” someone available to turn me in bed at night. I have a neuromuscular condition and don’t have the strength to move myself. From early childhood, my parents did this several times a night. As I got older, I asked myself, who can perform this role if I wish to move out? How can I meet this need?

I focused on what government funding might be available, or what living arrangements might make it affordable. At the time, funding for disability services was still rationed. No good options seemed available. (A recent disability reform in Australia, the National Disability Insurance Scheme, will hopefully change this in the future.) Still, I focused on just this avenue for quite sometime.

It wasn’t until I realised that I wasn’t focusing on the problem. The problem could be defined as follows:

Because of my neuromuscular condition I can’t move in bed by my own muscle alone. I spend around eight hours in bed per day, because humans evolved to sleep and sleeping is most efficiently done lying down. Failure to move for eight hours causes pain and discomfort because of the effect of gravity causing pressure on skin and other body tissue. If repeated every night, these effects will cause life threatening injuries such as skin pressure wounds. I wish to avoid prolonged pain and discomfort and life threatening injuries. Therefore, it is a problem to lie still for long durations regularly.

Focusing on the problem in this way lends itself to what author Edward de Bono terms ‘lateral thinking’. Exploring the problem immediately suggests many solutions. Some are impractical, some ridiculous, some undesirable, and some would introduce even more problems. But there is more food for thought than was previously available. For example:

● Could my sensation be removed by a drug or surgery?
● Could a cure for pressure sores be invented?
● Could I sleep submersed in water?
● Could I sleep without gravity (i.e., in space)?
● Could I be turned by a trained animal?
● Could I be turned by a mechanical device or robot?
● Could I sleep for only four hours a night?
● Could I sleep in my wheelchair regularly?

These are merely ideas, not solutions of themselves. Some problems may not have any solutions. But a problem focus opens up the possibilities of solutions.

In the end, it was the mechanical turning concept that bore fruit. I went looking on the internet for some device that might roll me on my bed. Instead, I stumbled on an ingenious mechanical bed manufactured in Canada. The bed itself rolls, thus relieving pressure. This has worked well for me, solving one of my main disability problems.

Thinking about disability problems takes some courage. If it is an important problem, you must face the possibility that there are no good solutions. Worse still, you may stumble on a promising idea, only to find, after much time and effort, that it will not work.

There’s another dark side to innovation around disability, and it is political. Societies co opt the hopeful spirit of innovation to dodge their social obligations. This includes obligations to fund disability supports and accessible environments. Stories, such as my turning bed experience, can be misappropriated to claim that a cheaper and better solution is always just beyond the horizon. We will be better off if we are energetic enough to pursue it or patient enough to wait for it. Why build ramps when flying wheelchairs might be just around the corner? Why fund personal care if a fraction of the cost spent on medical research could conceivably lead to a breakthrough cure?

This rhetoric exploits the misconception that science and technology progresses quickly and steadily across all fields. We focus on the breakthrough inventions that seemed to arise overnight (e.g., the internet, wi-fi, effective HIV/AIDS therapies).

Yet we ignore the technologies that have been relatively stuck for decades (nuclear fusion power, cheap superconductivity, stem cell based cures). In truth, if many different problems are tackled simultaneously there’ll be many breakthroughs each year. But no breakthrough is guaranteed or even likely for any specific problem.

Where expensive or imperfect solutions to disability problems exist, it’s society’s obligation to back these in the interim. Simultaneously society can work with people with disability to find better, cheaper, innovative solutions. If we people with disability have a special need, it’s the need for the best solutions to our problems possible in the present moment.

mark brown
Special thanks to Mark Brown for this wonderful article. Mark Brown is an early career researcher with interests in disability, health, and decision making. In 2013 he was awarded his PhD from Deakin University. Mark lives in inner-city Melbourne with his fiancée and her dog. Mark also has a physical disability (Spinal Muscular Atrophy) and uses an electric wheelchair. See markgbrown.com for more info.

This article was originally published in 2016 in DESIGNFORALL.

This was republished with the help of my brilliant and lovely academic support worker, Christina Irugalbandara.

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Author: petergibilisco

Researcher, author and advocate. Bachelor of Business Accounting, PhD from Melbourne University. Dealing with issues involving disability.

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