the surprised pessimist

"I'm not interested in blind optimism, but I'm very interested in optimism that is hard-won, that takes on darkness and then says, 'This is not enough.'" Colum McCann


Musings of a Carer

The best mobile phone for a quadriplegic?

As my son’s carer and constant companion, I agree with this recent blog post from the great guys at Komodo Open Labs in Canada – (makers of the Tecla). In an ideal world, they conclude, the iPhone 6+ is the best choice of phone for a quadriplegic.

The only thing I would add to their reasons for nominating the iPhone 6+ is that I recently watched Christopher in a store, using his head switch to test-drive a 6+ in Landscape Mode. He was absolutely delighted, noting that he is currently limited when watching videos on his wheelchair-mounted iPhone 6, because he has no way to rotate the screen between landscape and portrait modes at will. With the 6+, he could have it mounted permanently in Landscape Mode.

My father isn’t stupid…neither is my nephew

Let me share a tale of William, the Elder (my father, aged 84) and William, the Younger (my nephew, aged 8).

Since putting his toe in the world of computers a little while ago, William, the Elder has decided he is fundamentally stupid.
Computers have him almost completely stumped. It is an all-too-familiar sad tale.
Dad needs to type correspondence, draft ANZAC Day programs, send and receive emails and wants to enjoy the many FB and blog offerings of his grandkids. We gave him a second-hand laptop recently to use in his cluttered little home-office. Oh dear.
After us carefully setting everything up, I’m beginning to wonder if maybe we have only succeeded in setting him up (…to fail, that is)!
Despite purchasing various thick manuals ‘for dummies’; listening to countless explanations of how this stuff works; taking copious notes when guided through a process and referring to them studiously – the man literally tears-up in frustration when he encounters yet another mysterious road-block on his journey into the promised cyber-land he constantly hears others sharing and enthusing about.
I am frustrated too. How to get through to him? He is clearly motivated. He wants to learn. He tries hard. But I am beginning to wonder if the pain-to-gain ratio is worth it.
He is convinced he is stupid. He isn’t.

William, the Younger is not stupid either, but he recently encountered a baffling moment with technology. And it helped me to show dad that lack of intelligence is not his problem.
William, the Younger discovered an ancient artefact in his father’s car glovebox – a cassette!
“What’s this?”
“Oh that’s a cassette tape.”
“What does it do?”
“It has tape inside it with music recorded on it, so I can listen to music in the car.”
“How does it work?”
“Put it in that little slot there and you’ll see.”
A few minutes of fumbling and mumbling and the cassette slides smoothly in and numbers light up, indicating minutes and seconds.
“Nothing is happening.”
“Oh, it must be the end of that side. Turn the tape over.”
Completely stumped.
William, the Elder and William, the Younger, on encountering an undiscovered country for the first time, were similarly stumped. William, the Young didn’t care much – for him, it was a bizarre, yet fascinating little moment. William, the Old cares a lot – his usefulness, currency, intelligence, confidence, etc, etc, etc are all challenged and he is found wanting.
And he hasn’t even begun to experience the magical world of portable, touch-screen devices now available!
So, what am I to do? Give up? Encourage him to give up? I don’t know.
No. I’m not prepared to give up just yet.
I am an Accessibility Ambassador. Accessibility is built into Apple devices. Accessibility is in the company’s DNA. Accessibility is needed not only by the physically and intellectually impaired; but also, by those whose agility, flexibility and teachability are impaired by age.
The difficulties encountered by the elderly when attempting to access digital technology must surely be a worthy area of concern and attention.
Pondering some options!

The Long Dark Tea Time

Douglas Adams published The Long Dark Tea Time of the Soul in 1988. It is one of my favourites.

John of the Cross

The title is a playful reference to the oh-so-serious poem written 400 years earlier by the Christian mystic, St. John of the Cross, The Dark Night of the Soul which portrayed the agonies of human existence as a long, purifying journey towards the light of God. Seems we humans cannot help struggling and straining to find some  ‘meaning’ in the midst of life’s travails.

Here you see John gazing beatifically heavenward. I imagine him thinking, “Dude, seriously?”

For  quite a few years now, I have endured what I suppose you could call a ‘long, dark night of the soul’. And, not being religious, I can’t imagine that it has had anything to do with preparing my wretched soul for the eternal paradise to come, or whatever John was saying.

Perhaps you are religious. If so, I sincerely hope there is some comfort for you in your beliefs. Even so, if you have experienced the life-sapping bone-weariness of caring for a profoundly disabled child day-in and day-out, year after year, you’ll relate to what I am saying.

I recall reading a recent interview with Jane Wilde, the ex-wife of Stephen Hawking. I was grateful for her honesty and courage as she described how caring for his needs as his motor-neurone disease progressed was so overwhelming that she eventually became suicidal.

I did too for a while there.

I have been at pains to make sure my son, Christopher knows that this sad state of affairs is not, not ever, no way, his fault. If anything, he has ‘cared’ for me more times than I can count – always expressing concern for my needs whenever he could. But, let’s face it: those who care for disabled loved-ones are not saints or heroes or superwomen/men (despite what well-meaning observers insist on saying). They are ordinary people who face extra-ordinary demands and they need all the help they can get.

So, the time has come. I have come to realise that I can no longer keep doing it. I hope some day soon to turn my face towards other pursuits for a while. One of those pursuits is to seek out opportunities to facilitate  training in the use of Switch Control, Apple’s accessibility feature.

And here’s the thing…This is only possible for me now because of the opportunities for self-fulfilment, self-reliance and self-development that technology has afforded Christopher in the last couple of years.

There are many different kinds and degrees of disability that people face, and Switch Control will not help everyone. And I know that every situation is different; but for us, after such a long ‘night’, I sense a new dawn breaking.

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