It's some consolation that software and hardware can make a telling difference to the final phase of a human life.
Written in Tokyo and dispatched to TechRepublic the same day from a conference wi-fi service at 22Mbps.
Many years ago I was involved in a technology project for the physically and mentally challenged and I was both humbled and tested by the experience. I also learned a lot about the human spirit as well as some specific interface problems.
Until recently I thought it was all in my distant past, but then a new challenge came along from a direction I never expected.
My friend Howard had led an active life of travel and engagement as a BBC reporter and producer. But he never complained as the irritating ache in his shoulder rapidly turned into a diagnosis of motor neurone disease, or MND.
The decline in his health and mobility was shockingly fast, and while he showed incredible sangfroid, his greatest fear was the prospect of losing the ability to communicate. Fortunately, I could assure him that there had to be a good engineering solution.
It was impressive to see the speed at which Howard's home was adapted with the UK MND Association's support. Equipment included mobility aids and the provision of a fully motorised wheelchair, but I was more than surprised at the Lightwriter text-to-speech box.
To be blunt, it looked like something engineered for a Soviet submarine circa 1960. It was big, clunky, hot, tethered by a power cable, and offered no mobility and a very narrow range of facilities.
As an engineer and manager, I have always designed and adopted technologies that gave a good RoI for the user. So my key criteria for devices and apps place price relatively low on the priority scale when compared with:
- An attractive appearance.
- Adaptability and usability.
- An intuitive and easy-to-use interface.
- The amplification of users' efforts and efficiency.
- Weight, size, power consumption and portability.
Personally, I want to carry the minimum number of devices that make me as effective as possible. We found numerous iPad apps ranging from ones that were free to download to others costing $160, and Howard set about road-testing several fit-for-purpose apps while he still had speech, hand movement, and tactile capabilities. He then selected the app that suited him best.
Doing these trials early turned out to be essential as he could test-fly everything and become skilled ahead of his progressive degeneration. It was delightful to see his joy at being able to access TV, radio, YouTube, Facebook, email and the web from the one device, which also provided him with a new voice of his choosing.
At the same time we integrated a holster and flexible arm into Howard's chariot so his iPad was always within easy reach and could be retracted when he got in or out of the wheelchair.
The next innovation was a small amplifier with integrated speakers secreted into his head support. All this kit was battery powered and independent of any plugs, sockets and trailling cables, with an operating time of more than a full day.
This combination of amplifier and speakers was the simplest but most dramatic innovation. All text-to-speech devices such as the iPad, smartphone or Lightwriter have inbuilt speakers so when users type everyone looks at the box rather than the person.
But eye contact and gaze awareness are essential for many reasons. So by simply putting an amplifier and speakers behind a person's head increases engagement, putting everyone face to face with the user rather than staring at a chunk of technology.
I also promised Howard that if he lost the ability to type I would be able to engineer an extended solution using raster-scan software at a modest cost.
With only an ability to blink an eye or twitch a muscle, he would still be able to work his applications and would not lose his voice. Unfortunately, his condition deteriorated rapidly and that need was overtaken by events.
Howard died in March and I lost a friend for whom I had the utmost admiration. Even during the hardest times amid the painful process of MND we enjoyed the challenge and fun of solving problems and meeting his very specific needs.
If you ever find yourself in my position, but lack the engineering skills, befriend a geek. It isn't rocket science, just basic engineering and it doesn't cost the earth. What was done with an iPad can also be engineered into a smartphone and many other brands of tablet.
Engineering a solution for many physical conditions with off-the-shelf devices and applications can be relatively straightforward through the shared efforts of a small online community, and you really can transform a life. An example of this collective approach is AbleGamers, a community for gaming, disability, and gaming with a disability.
One of my favourite movie quotes of all time: "Shall I tell you what I find beautiful about you? You are at your very best when things are worst." Starman's farewell to hostage-turned-lover Jenny Hayden in the middle of the Arizona crater where he was met by an alien search party. The movie? Starman from 1984.