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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

Month

January 2016

On Leaving a Trail

Do not go where the path may lead; go instead where there is no path – and leave a trail.

(Fun fact: This quote is widely attributed to Ralph Waldo Emerson, but it is more likely to have first been given to us by poet, Muriel Strode in 1903. Anyhoo…)

This pithy little trope is often encountered these days in the wide world of quotable quotes and inspirational literature. And, fair enough. It captures the imagination, evoking notions of far-sighted determination, rugged individualism and courage.

But for me, it is a useful point of departure when discussing our family’s experience of caring for a disabled family member over the past two decades.

In other words – it’s not that we have valiantly chosen to go where there is no path so as to blaze a trail for others. Often, there simply has been no path!

I could cite example after example of occasions when we have sought a solution to a problem, or assistance with a need, or answers to a question arising from the ever-present realities of raising a child with profound cerebral palsy – physical impairment, mobility, communication difficulties, social limitations, health, access, education, employment, relationships, etc, etc, etc. And on so many of those occasions, we have found ourselves blazing a new trail, in uncharted territory, machete-ing through dense undergrowth, wading through interminable fever-infested swamps…ok, getting bit carried away. But you get my point?

It isn’t that we have not encountered helpful, caring people. We have. Many. It’s just that they have often said to us, “Oh, I don’t know, sorry” or “I don’t think there anything you can do about that, sorry” or “No, we don’t have that kind of option available, sorry” or “Hmm, never thought about that, sorry” or…

Here’s a good example of what I’m talking about: a 2 minute video produced by my son, Christopher showing the process we went through to set up his electric door remote control so that he could control the door using his iPhone.

(Our solution=hack: spec-switch – Tecla Shield – iPhone Switch Control – Play Bluno App – Arduino Board – RF remote-control – door. More details available if you’d like)

Put these facts together – 1) there are many, many variations when it comes to abilities and disabilities, family circumstances, finances, location and 2) technology is changing fast. So it is almost inevitable that when parents/carers or support-workers look for a way forward, there is often no well-trodden path to follow. They have given something a go or come up with a solution of their own and left a trail that may provide a way for others.

If you have a story to share of a pathway you forged, why not share it. The trail you left may smooth the way for someone else.

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.

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