Search

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

Category

Musings of a Carer

Apple has given my son a hand!

The human hand is a wondrous piece of engineering. Imagine where you’d be if you were suddenly without yours.

thumbs-up-signThink of the language we use: reach out, lend-a-hand, hands-on, get a grip, hand-out, handy, a handful, hands-free, hand-over, hang-on, hold on, at your fingertips, in the palm of your hand, second-hand, hand-me-downs, high-five, point-the-finger, thumbs-up, let your fingers do the walking, etc.

There are about 1,000 minutes in a waking day. I wonder how many of those minutes involve you using your hands…

…Grasping, gripping, holding…

…Making, fixing, building…

…Driving, working, writing…

…Caressing, fondling, stroking…

…and I wonder how you’d take care of yourself, earn a living, express yourself, interact with others, follow your dreams, live, if you had no use of your hands.

I don’t have to imagine what this is like. I have experienced it daily through my son, whose quadriplegia means that his strong, well-formed hands are quite useless. Well, perhaps not totally useless. As a diabetic, he needs several blood-glucose tests a day, and his fingers get regularly stuck with needles. But that’s all they are good for.

Then, surprise, surprise, into our lives comes Apple.

Did you know that every Apple device – Mac, iPhone, iPad, Apple TV, Apple Watch – is engineered with a powerful suite of Accessibility features? One of those features – Switch Control – is for people who have some form of physical impairment, such that they find it difficult or impossible to touch a screen or type on a keyboard or handle a remote control.

Using Switch Control, and tapping a small switch with his head, my son tweets, texts, types emails, makes FaceTime calls, operates the TV, studies at university online, runs a video-editing business using Final Cut Pro on his Mac, plays games, listens to music, turns on lights and air-conditioners in the house and even pilots a drone!

And there’s a new feature in iOS10 and MacOS Sierra called Platform Switching. This enables a Switch Control user to ‘pick up and put down’ various Apple devices around the home and office and control them from one device; in Christopher’s case, his wheelchair-mounted iPhone is now his universal remote controller and switch interface.

If you’re a Switch Control user and you haven’t tried Platform Switching, here’s a quick video I made, showing you how to activate it.

I never thought such things would be possible. I’m a pessimist, so I’m surprised!

Had a good laugh yet today? Go on…have one!

Parents of children-with-a-disability often lose laughter as easily as misplacing the car keys.

I grew up in a fairly serious and respectable family where personal responsibility and

laughpeace-and-quiet  were highly regarded. Noisy, spontaneous or, god forbid, boisterous behaviour was frowned upon.
My father was, and still is locally-renowned for his comedic talent on stage and television, but throughout my childhood, he routinely shed that kind of nonsense at the door, along with his hat and coat when he came into the house. Strange that.

And yet, I do have a few vivid, childhood recollections of rare moments of rampant hilarity – sometimes at home – and these have tended to be more durable than other memories. I’m smiling now as I think of a few instances.

And it makes sense, I suppose. Memories being what they are.

…that snort-food-out-your-nostrils, annoy-the-neighbours laugh-out-loud thing we do…

The human propensity to find things funny is fascinating in itself; but our physical response – anything from a smile, a grin or a titter; to a chuckle, a chortle, a giggle or a wheeze; right through to that snort-food-out-your-nostrils, annoy-the-neighbours laugh-out-loud thing we do – has all kinds of deep, mysterious healing effects on our bodies and minds. Measurable effects.

Check out this article if you don’t believe me.

Parents of children-with-a-disability often lose laughter as easily as misplacing the car keys – and not as a result of carelessness. Quite the opposite.

This might not be much of a loss if wasn’t for the fact that laughter is one of those free gifts we get in life. A free gift that makes us just a bit happier and healthier. A gift that is most needed when facing life-sapping challenges day after day after day.

I wish I’d twigged to this years ago. Honestly, I could have laughed a lot more than I did. And I’d have been better for it; as would everyone around me.

They tell me that if you smile; even a fake smile… (Just do it now. Go on. Tighten the muscles around your mouth and do your best creepy, joker fake-smile)… something physically changes in your body and mind. Just a tiny change, but a real one. Or look at someone smiling or laughing. Bet you can’t keep a straight face. After that, the next smile comes a little more spontaneously.

What’s the thing that gets you laughing? Chances are it is unique to you, but it will fall into one of a handful of categories. Go looking for it today. Chances are it won’t be that hard to find. And when you do, receive the free gift of a good laugh and bask in it.

Your circumstances won’t have changed; but you will. Your battles will still be there; but you’ll be refreshed to go on fighting a bit longer. At least, that’s what I’ve found.

Love to hear your thoughts on this.

 

 

 

 

Home Automation, Good Design and Independent Living

Christopher and I recently toured a display house built by the good people at Ausmar Homes. The house is excellent because the approach to designing it is excellent. As with all good design, it is inclusive, not exclusive.

ausmar assist.jpg

Homes have traditionally been built with only the able-bodied in mind. Architects usually design houses – doorways, hallways, windows, steps, kitchen bench top heights, bathrooms, utility spaces,  driveways, landscaping, etc, based on the assumption that the only people who live in houses are fully able-bodied. Anyone who lives with mobility difficulties has no choice but to undertake expensive modifications to the homes they buy or build in order to live there comfortably and safely.

But – just as with ramped kerbs – if the built environment is designed to include those ‘on the margins’, it will include everyone; exclude no-one. A house is no different. Anyone, regardless of ability or disability can easily get through a slightly wider doorway. Not everyone can easily get through a narrow doorway. Everyone can negotiate a ramp. Not everyone can negotiate a step.

And with our ageing population, more and more people are living with one form of disability or impairment or another. Why not simply design every new house so that anyone could move in and live there? Expense? Not really. If all homes were designed from the start with this approach, economies of scale would immediately apply.

Add to a well-designed building, some of the accessible, affordable home-automation technology available these days, and you begin to see a whole new world of possibilities for independent living. There is a mishmash of ‘smart’ home appliances becoming available. And this is good. But it is far from a perfect solution. What’s needed is for someone to give us accessible devices that we can personalise and then operate reliably and securely within a home network, and then invite home-appliance manufacturers to make their products compatible with these personalised devices, so that anyone, regardless of ability or disability, can live more independently in their own homes.

Apple’s new HomeKit in iOS 10, built-in to all iPads and iPhones – the most accessible devices on the planet, bar none – allows for home appliances (not very many in Australia yet, but more becoming available all the time) such as lights, door-locks and sensors to be connected easily and securely via the home wifi network, and controlled from the HomeKit App. Imagine asking Siri to turn off the living room lights, activate scenes, or lock the front door from anywhere in the world.

We spent a few days shooting a little video to help you imagine how cool it would be to live in a home that is built right and equipped right. Christopher has just completed the edit. Here it is…

I never thought such things would be possible. I’m a pessimist, so I’m surprised!

 

What did you do in the war?

It is common-knowledge that veterans are not inclined to talk much about their tours of duty once they get home – unless, of course, they are in the exclusive company of comrades. And even then, the mood has to be just right.

It isn’t impolite to ask ‘what did you do in the war?’ Just don’t be surprised or offended if you don’t get much detail in response. Pretty easy to understand why. Even if one is not trying to forget, some things are just too hard to put in words. And even the right words are all-but-meaningless to those who have not shared something similar.

Ever wondered what goes on day-after-day in the life of so-called “unpaid carers”? The ones who live behind the doors of homes in your neighbourhood. Homes where there is disability or chronic-illness?

Well, you can ask them; but don’t be surprised if they don’t have much to say about it. Not surprising, really. It isn’t mortal combat, of course; but it can be emotionally, physically, mentally and financially-taxing enough to create a gulf too wide to cross without a lot of effort. Then there are the prejudices and misconceptions one encounters; the busy-ness and distraction; and the ignorance – well-intentioned or not – that makes many a carer decide eventually that it is isn’t worth it to even try to talk much about it.

It is still unclear if the apparent murder-suicide in the Manrique/Lutz family in Sydney this week had anything to do with disability or carer-despair. But there are many examples of similar tragedies that did. And here’s the thing – for every such extreme instance; there are hundreds of thousands of others that don’t make it into the public awareness. Lives of ‘quiet desperation’ generally go unnoticed.

I am not a veteran, but for a long time, I have been (and continue to be, albeit in a lesser capacity) a carer. And I rarely talk about it. It has taken a lot for me to even write this humble blog post this morning.

The main hurdle I have to overcome is to believe that it is worth it. Worth it to summon the energy to make the attempt. But, of course it must be worth it. Even limited understanding and awareness is always better than none at all. And who’s going to help you understand and be aware, if not someone who has been through it?

The other main hurdle is that talking about this necessarily involves others. And I’m uncomfortable talking about others. The moment I am introduced to someone as my son’s ‘carer’, for example, I am quick to add that he cares for me too. And it is true. I don’t want anyone to be under the misapprehension that it all goes one way. He: all ‘needy’. Me: all ‘care-y’! His awareness of my needs and his concerns for my well-being are never far beneath the surface.

Yet, if I’m circling around actual, deep, warts-and-all honesty, the truth of this also serves as something of a deflection from the deeper truth that I don’t like talking about myself. And that truth, in turn, masks the deeper truth that I can’t pretend not to be that child who is so desperate to talk about himself – to have someone understand, and yet so sure that nobody will understand, that he shrugs his shoulders and says ‘I don’t want to talk about it’.

See…I knew I shouldn’t have started this!

So…what’s it been like for this carer? Technical terms like ‘chronic-sorrow’ and ‘life-long grief’ come to mind; but let’s stick to plain language.  A carer can feel locked in a time-vortex in which the dynamics of ‘parent-of-a-newborn’ become the life-long reality: sleep-deprivation, diverted resources; life’s ambitions on-hold; seismic shifts in relationships. A carer has to be a fighter, an advocate, a counsellor, an inventor. Empathic, tough and patient. The limits of endurance, courage and good-humour are frequently breached. An inner-spring of hope, love and optimism is essential.

I wish I was a saint or a superman; but I most certainly am not. I’ve done my best as a dad and carer, and have to live with the knowledge that my best has not always been good enough.

cheers,

Garry

The Kalamazoo Kerb Cuts

Christopher and I recently stayed at a rather swish hotel in the Sydney CBD. Upon arrival in a taxi, we encountered this rather imposing concrete kerb.

IMG_1315 2

Granted, the Concierge provided a portable ramp so we could gain access; but this was a cumbersome and unsafe solution (we had to sit and wait, holding up vehicles in the driveway while the ramp was positioned); an inadequate after-thought.

Here is the kerb bordering the driveway of another hotel I visited recently. As you can see, it is fully, gently ramped, and I’m guessing cost no more to install than the old-style stepped ones.

IMG_1327

To me, these 2 kerbs are a metaphor for a larger issue – design, and the thinking that lies behind it.

Design that excludes, disempowers or endangers is poor design. And a shift in thinking – usually occasioned by painful experience – always precedes good design.

Consider the shift in thinking illustrated in this cartoon:

Clearing_a_path

The young person in the wheelchair has noted a fact that many of us tend to overlook – inclusive (or universal) design is good for everybody! The fully-ramped kerb includes everyone.

I recently read a great article about Jack H. Fisher, a veteran of WW2, whose injuries left him permanently disabled. After the war, as a thinker, community leader and advocate for veterans, he instigated the first trial of ‘curb cuts’ in Kalamazoo, Michigan in 1945. So great was the success of this trial that we now expect to see ramped kerbs everywhere. They are, to paraphrase Gerald Baptiste, Associate Director of Berkeley, California’s Center for Independent Living in 1997: “…the slab of concrete heard round the world.”

In our family, we have lived with all manner of what is called ‘assistive technology’ and, where it actually assists, we are grateful for it. But, let’s face it, it is usually expensive, clunky, often unreliable and something of an ‘afterthought’ to be bolted onto a mainstream device or technology. A bit like this:

IMG_1324

Fine, as far as it goes; better than nothing; but still an afterthought, an add-on, and not very elegant. Certainly not discreet or ‘inclusive’. There is an obvious differentiation between one point of access to the building (the step) and another (the ramp). If you think this doesn’t matter, consider the child in the classroom required to access some kind of bulky, ugly assistive technology, and standing out as a result; compared to the child who is able to use the same mainstream devices and solutions as everyone else. I know which I would have preferred in school!

So the Kalamazoo Curb Cuts were quite revolutionary; and what has been done with the concept since 1945 – the full ramped kerb, for example; has increased inclusivity, fairness and safety for everyone. Inclusive Design is Good Design.

We are big fans of Apple Accessibility. An example of thoughtful, inclusive design. Good design. Features built into mainstream products – Macs and touch-screen devices, useable, ‘out-of-the-box’ at no extra expense and baked deeply into the heart of the device.

___________________________________________________

Thanks to Stephen Brown, writing for the Disability Studies Quarterly , in 1999. [http://www.independentliving.org/docs3/brown99a.html]

The Best Hands-Free Device Hands-Down

I made this short video to send to the guys at Komodo Open Labs in Canada as a user-testimonial for their magic little ‘Tecla Shield’ Bluetooth Switch Interface.

Tecla
Tecla Shield

As a parent and carer, I can say that the Tecla has made a huge difference in my life; because it’s made a huge difference in my son’s life.

I am very grateful for the Tecla Shield because it is the only device I know of that gives him reliable, wireless access to his Mac and iPhone.

Think of the Tecla as a device that enables a person who has NO HANDS to access a Mac or iPhone and do exactly the same things that can be done by someone who does have use of their hands. A Tecla works like a touch-screen or a wireless keyboard – ever used a touch-screen device? brilliant! ever used a bluetooth keyboard? also brilliant! But what if you had no hands?

Think of tapping a switch like tapping your fingers on a computer keyboard or tapping on a touch-screen device (although, let’s be honest here – when I say ‘computer’, I mean ‘Mac’, and when I say ‘touch-screen device’, I mean ‘iPhone’ or ‘iPad’, because; frankly, PCs won’t talk very nicely to my son. But Macs do! Other phones won’t talk very helpfully to my son, but iPhones do!  Only Apple devices have this free in-built feature – it’s called Switch Control.)

With the little blue and orange box in his wheelchair backpack, my quadriplegic son is enabled, through Apple Switch Control, to make connections with the world…literally. Without the use of his hands, he nevertheless opens and closes doors,  edits video, turns on his office air-conditioner, chats to friends, makes phone calls, listens to music, completes university courses, runs his own business, etc, etc, etc.

The Tecla Shield – a cute little box with a funny name. Where would we be without it!

Smoke Gets in My Eyes

Exactly 4 years ago, March 2012, my son, Christopher, who was 15 at the time, made this little video. When he had completed it, he showed it to me, and I must admit that some ‘smoke got in my eyes’.

I had helped him with the video – operating the camera at his direction, typing in subtitles, etc, as I had done on a number of previous occasions; but, let’s be clear – HE produced and edited it. On his own. From start to finish. Using a single switch.

When I saw the finished product, I suddenly realised – as I had not dared to for the previous 15 years – that my son; smart and funny, yet quadriplegic and speech-impaired with cerebral palsy, might just have a bright future ahead of him. A future in which he might have a Career. Opportunities. An Income. Independence. A Creative Outlet. Friends…

What I didn’t expect was what happened next.

Christopher had made the video simply to send to his TAFE-online I.T. teachers to introduce himself to them. This he did, and had a muted response. It was when he shared it with a tech network run from Seattle, WA, USA, that the fun began.  The video quickly gathered nearly 100,000 views and began a wild ride for us!

When Christopher got to his computer the next morning, there were literally hundreds of comments and emails waiting for him in response to his video on youtube. Many of these were from trolls and nameless bullies who try to make their pitiful lives feel better by tearing others down with sarcasm, insults and invective. And let’s face it, the dimmest and weakest of bullies can make fun of somebody who is disabled.

I got some more smoke in my eyes, and quickly took the video down.

After advice from Chris Pirillo, we uploaded the video again, and things have only continued to surprise and delight us ever since. A World Wide Web of friends, opportunities, education and work have opened up, and Christopher hasn’t looked back. This weekend, he is again a keynote speaker at an important event (the Assistive Solutions Expo in Brisbane, organised by Spinal Life Australia).

I’ll be there with him, and, at some point, once again, some smoke may get in my eyes.

I never thought such things would be possible. I’m a pessimist, so I’m surprised!

 

 

 

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.

Blog at WordPress.com.

Up ↑

%d bloggers like this: