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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

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Garry

father, carer, consultant, writer, beachcomber My Gravatar = Life's a Climb

Another look at Kerb Cuts and Inclusive Technology

I was asked to present briefly at the QLD Dept of Communities, Clinicians Conference: “The Future is Now” in June, to introduce Allied Health Professionals to Apple Accessibility features from a Carer’s/Parent’s perspective. The presentation was not recorded, but I was asked to make a section of the content of the presentation available via video; so here it is!

This is my first attempt at this particular format – multiple video recordings of the same script against a ‘green screen’, and I haven’t perfected the technique yet; but I’ve decided to make the video available anyway in the spirit of getting something ‘out there’; rather than withholding it while I labour over it to make it perfect.

I’m getting set to use this approach to create a series of ‘snapshot’ and ‘in-depth’ videos from my perspective about all of Apple’s accessibility features.

Any and all feedback is welcome.

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]

A Quick Look at Recipes

Moving at a glacial pace (a bit like our internet) I am gradually working towards producing an on-going series of short videos about Switch Control and other assistive technologies. My plan is to have a series of 3-4 minute videos under the title “A Quick Look” and an accompanying series of longer (5-10 minute) instructional videos on the same topics, entitled “A Closer Look.”

Here is my first video – A Quick Look at Recipes. Feedback most welcome. I hope the content is helpful?

Molly’s Watch

This is quite l0ng, but a fantastic post from Molly Watt, who lives with Usher Syndrome, about her experiences with her Apple Watch.

She writes…

“I fully intended to return my applewatch within 14 days, however, it transported me on a journey into a new world of accessibility, confidence and independence.

I…have been so impressed by what it has done for me that I set up a fundraising campaign to help fund applewatch for others living with Usher Syndrome.”

Well worth a read…

http://www.mollywatt.com/blog/entry/my-applewatch-after-365-days

 

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.

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.”
“What?”
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!

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