I have always been somewhat suspicious of simulations of disability, no matter what the context. How easy is it really to replicate someone’s experience? I use the analogy of labour and childbirth. While I might wish that long and uncomfortable experience of mine on a few males of my acquaintance, I defy modern physical science and psychology to do so. Without the psychological makeup of whatever kind, the preceding experience and the relevant anatomical makeup the simulation would be meaningless.

It goes without question that no one these days would suggest an attempt to simulate belonging to another race as a valid or ethical activity.

While simulation exercises may claim to give insight into the experience of impairment and disability, the so called insight can be positive or negative, depending on how the recipient processes the experience. They could end up believing that the utter helplessness or disempowerment they may feel in such an unfamiliar situation is the everyday experience of all disabled people, which would be counterproductive, and false.

Disabled people do not experience disability in this way. Even if the onset is sudden there is usually some way of learning to cope and adapt before being thrown into a newly unfamiliar world. Disabled people in my experience are very creative and adaptable.

It is one experience, that’s all it is. Disabled people are as different as everyone else, and each disabled person will experience their life in a different way, as non-disabled people do.

Disability simulation is not a game either. It often is in simulation exercises which is trivialising and rather insulting. While living with disability has its fun side, it is generally not a game.

Finally, and most importantly – What’s wrong with listening to our voices as disabled people? Our voices are valid and credible, and yes they will be different and reflect different experiences. But they will tell it like it is, from our perspective.

If non-disabled people want to make a difference to the lives of disabled people in a disabling world they should hear those voices and act on what they learn from disabled people themselves, rather than trying to appropriate our experience and reflect it through a non-disabled world view.

Simulating disability is like simulating labour and childbirth, impossible. Get over it.

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Thank you to everyone who has followed my blog and commented over the past year. It has certainly been a busy, eventful and sometimes difficult one. I hope that, like me, you are able to take a break and do some things you really enjoy with some people you love being with.

May you all have a very happy Christmas and a safe and restful break. Of course not everyone celebrates Christmas. To those who don’t you have my good wishes.

The New Year will bring new challenges and opportunities for all of us. I have some new and informative posts planned so do return next year.

Ka kite ano

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I have been so busy tweeting, Facebooking, watching videos on Youtube and whatnot that I am forgetting about my poor old blog! All this social media stuff is quite time consuming. It does allow you let off steam though. I posted to Facebook immediately over a very annoying incident when Steve tried to take a taxi to get our empty cook top gas bottle filled. The driver refused on the grounds of ‘dangerous goods’! Fortunately he found one that would take him and the bottle. Gas bottles are heavy when full and the filling station is some distance away. So much for carbon footprint – It’s just another way to discriminate against those of us without cars.

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I have been a bit slack about my blog lately, partly because I have been away without access to email. A lot seems to have happened in the last few weeks. My time been particularly taken up with family.

Towards the end of September I spent time with my mother, returning to my rural roots in Canterbury. I took the guided tour around my brother’s new state-of-the-art dairy operation on land that would be as dry as a bone were it not for irrigation. It seemed so strange that I had to pinch myself to make sure this was really true and not a cold-induced hallucination. I wondered what our father would think. Growing up in a traditional Canterbury sheep and cropping farming family we had always scorned “cow cockies” But although Dad was deeply conservative when it came to the behaviour and dress standards of teenage daughters he was never closed-minded about new farming developments. I suspect he would approve.

On Sunday Mum and I went to church. But instead of attending the beautiful neo-gothic St Johns we drove to Lake Coleridge under the lee of Mt Hutt, (Maunga Whare) on a lowering gray day with snow on the tops. The service was a homely spring festival, belied by the temperatures which were distinctly mid winter. A small group of people in a semi-circle around a comfortably crackling fragrant wood fire in the little community hall sang hymns and said prayers which had been refreshingly rewritten for the rural congregation. So instead of “We plough the fields and scatter the good seed on the land” we sang, “We plough the fields with tractors, with drills we sow the land.” It was a delightfully informal service, with one reader being moved to pause and mutter darkly “we could do without them,” to a reference to possums.

The warmth of the service continued in a hospitable high country home nearby where I found myself discussing the inappropriateness of young disabled people living in rest homes and the finer points of web design over a substantial morning tea in an environment where the views from the windows were equaled by the artwork on the walls and a pleasing modern interior of a house that blended satisfyingly into the landscape.

From Canterbury it was a flying visit home to fling the merino out of my bag and substitute some light weight cotton and head off to Brisbane to join other family members for a short holiday. It was below ten degrees in rural Canterbury and hitting thirty in Brisbane! There was relaxing, shopping, swims in the apartment pool, some river trips and of course good eating and drinking, and catching up with a friend.

And then back to the coal face, with two days of workshops and meeting, and a good old freezing Wellington southerly. Just as well I am a tough southern woman!

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Today in Montana Poetry Day so I thought I would join in the fun with a little offering of my own. I dedicate it to New Zealand Post – we received a second copy of their wretched survey the other day.

A curse on all spammers

(This can be sung to the tune of ‘A Policeman’s Lot is not a Happy One, with sincere apologies to Gilbert and Sullivan)

When your inbox is full up with stupid spam
Stupid spam
And your modem has got treacle in its guts
In its guts
When your favourite website’s gone down yet again
Yet again
You think that finally you will go nuts
Will go nuts

It is then your thoughts turn to cursing spammers
Cursing spammers
You curse each and every spammer in the world
In the world
You imagine whacking fingers with hot hammers
With hot hammers
And picture heights from which they should be hurled
Should be hurled

You imagine anatomic amputations
Amputations
You wish horrible diseases on their heads
On their heads
You hope they are attached by evil monsters
Evil monsters
And that there are live piranhas in their beds
In their beds

You wish them lethal currents down their wires
Down their wires
(But let the fatal moment not be quick)
Not be quick
You hope for something hot and sharp and pointed
Sharp and pointed
Up their fundamental orifices stick
‘fices stick

Perhaps the worst thing that can be wished upon them
Wished upon them
Is a diet of their own annoying stuff
Annoying stuff
Their computers spewing never ending spam
Ending spam
Despite despairing cries of that’s enough!
That’s enough!

So spammers electronic also postal
Also postal
I have got you in my never failing sights
Failing sights
Just remember that I’m really out to get you
Out to get you
And my curse will get you one of these dark nights
These dark nights

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I have been revelling in having more family around me than I have had for a long time. Both daughters were at home and we have family for the UK here as well. It has been full on socialising with good food and wine, and a bit of work squashed in around the edges.

Enjoying my family and holidaying with them have been responsible for the lack of posts over the last few weeks. We travelled around the North and South Islands mostly by car which was very cool for someone who doesn’t drive.

We stayed at motels ancient and modern and visited places as diverse as the Bay of Islands where the weather was warm and the sun shone, and Lake Wanaka where it rained, and many places in between.

We introduced our English rellies to tuataras and the summer pleasures of birds and bush at the Karori Wildlife Sanctuary and the culinary delight of Bluff oysters. Yum! Visitors are always a good excuse to sample great kiwi kai and wine! I will really have to start swimming again!

We tried the paddle steamer on the Wanganui or is it Whanganui river. The Waimarie is pleasantly slow and rather smutty – I mean coal smuts not the other kind. It was interesting to learn something about the history of the river, but I suspect it was sanitised.

Visiting the Govett Brewster gallery in New Plymouth was noisy and rather challenging with some very modern art – not quite sure about the continuous rounding up of the same mob of sheep, but I really like Len Lye’s work and look forward to visiting the planned Len Lye Centre one day. (The web site is hideous I have to say though.)

At the kiwi house at Otorohanga and I got closer to a large speckled kiwi than I have ever been to any kiwi! Another horrible web site.

We dove straight through Auckland (for once) and headed north to the Bay of Islands, stopping to see the huge graceful swamp Kauri carvings just outside Wellsford. The best bit for me though, was the Treaty Grounds at Waitangi. I understand that 80% of visitors are from overseas, yet there is so much of our own history there that I was very surprised by that figure. It is really worth a visit, and should be a ‘must do’ for all kiwis.

After all that, I took a flight to Christchurch with a change to some southern scenery. Omarama was our destination, with a call at Geraldine and Lake Tekapo on the way. The McKenzie County is just as breathtaking as I remember it, even with very little snow on the tops. Trees were beginning to turn; we ate salmon from the local salmon farm, watched our host and hostess water ski from their boat in late afternoon sunshine and spent an evening soaking steamily under the stars in a hot tub with scented wood smoke drifting lazily from the heating chimney. (They said they have an accessible tub and they are keen to attract older and disabled customers so check it out southerners.)

All good things must come to an end. Our UK rellies have gone home and our globe trotting daughter has set off on the next instalment of her OE, while the other one is immersed in work to save up for hers. Sadly I have no excuse now not to be working.

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I have been travelling quite a lot by air lately. Consequently I have heard the safety announcements fairly often. You know the one, with the instructions on the brace position and holding onto your ankles so your feet won’t leave the floor in an emergency. I was led to reflect on the seemingly ineffectual nature of such an activity when you are hurtling earthwards at a frightening pace after hearing about the Qantas plane dropping from the sky, causing panic and some severe injuries before being able to right itself. But I do keep my seat belt fastened which is probably all you can realistically do when the chips are down.

I also wonder how useful the equivalent economic brace positions adopted by governments around the world might be in the current economic maelstrom. As I watch my retirement savings diminish I hope they will have some effect.

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This week is truly celebratory!

It began with the Disability Rights Convention CRPD, continuing with the presentation in New York of the FDR Award to New Zealand.

On Saturday DPA cut a celebratory cake for the Convention, and there are a few other celebrations planned for both events.

It is fitting that yesterday marked the launch of our second National Sign Language week. It was moving to experience the national anthem sung and signed in English and Maori at parliament, along with one of my favourite Hirini Melbourne song The Butterfly. (If someone can post the Maori title please do.) The Deaf community sure can party.

The theme this year is freedom of expression, which of course is a basic human right spelled out in the CRPD. The site has a calendar which is full of great events. Check it out. The butterfly sign logo for the week is a potent symbol of that freedom. It is interesting to note that butterflies are deaf. They negotiate their way through the world by using their antennae.

I have a personal celebration as well. We have both our daughters at home as our younger daughter is 21 this week. It’s odd how this quaint celebration custom still exists even though there is no longer any legal significance about reaching this age. You can drink at eighteen, serve in the armed forces at eighteen and vote at eighteen. Most people have the key of the door much younger these days, and may already be burdened with student debt by the age of 21. I guess it is just a good excuse for a party paid for by parents in return for their being allowed to tell embarrassing childhood stories.

Happy Birthday Alice!

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There’s a certain irony about the man who can’t compete in the Olympics because his artificial legs would give him an unfair advantage over the “regular” athletes! Does that mean that the Paralympians are now faster than the Olympians! Aren’t the Olympics supposed to be the crème de la crème of speed and the Paralympics for crocks who can’t compete on the same terms as “real” sportspeople? This is really confusing to a sports dummy like me who was brought up to believe that disabled people could not go out there and aggressively compete at sport.

Reuters reported earlier this year “Nightmare visions of athletes using all sorts of mechanical aids to improve performances prompted the International Association of Athletics Federations (IAAF) to amend its rules last year.” Heaven forbid!

It went on to say “The IAAF banned technical devices incorporating “springs, wheels or any other element” giving athletes an advantage over their competitors.” (What about fibreglass vaulting poles then?) You just can’t win can you, as a South African athlete who tested the rule found.

Disabled people used to know their place. But not any more. They climb mountains, go skiing, rafting, yachting, run the New York and countless other marathons, and indulge in all manner of sporting pastimes. A special Olympian with Down syndrome is about to attempt the Sky Tower Challenge. Is there no end to what uppity crips and blindies will get up to these days?
Time was when sports reporters were very scornful about Paralympics and disability sports generally, claiming that they weren’t really sports. They never got any mainstream sports coverage. They still don’t get enough, especially when they are winning and the so-called mainstream sports are losing bigtime.

Yet I heard a sports reporter on radio New Zealand just the other day extolling wheelchair rugby, and the wheelblacks (always makes me think of bootblacks for the 21st century,) as great spectator sport. He described with great relish the vigorous and sometimes destructive contact between players. And how they fall out of their chairs, get put back in and continue pursuing a sport every bit as aggressive, macho and physical as its namesake. There was a very strong hint of bloodlust in his enthusiasm.

But back to the guy with the techno racing legs. I think he should be able to race in the Olympics. It would be great to see a crip win in the ‘real’ games. It could be the start of a sporting revolution. I for one would cheer him on.

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AccEase is urgently looking for testers with mobility impairments to work with us in our “real world” web site testing service.

You will need to be someone who uses assistive technology to help you use computers, e.g. voice recognition, sticky keys, pointer or any kind of mouse substitute etc.

We need someone who can work to deadlines, is reliable and who can sometimes work at short notice. You don’t have to be a geek, just interested in using the Internet in an ordinary way.

This is, of course, paid work, but is fairly irregular. It suits students and people working either at home or someone in or looking for part-time work. You can be from anywhere in NZ.

If you are interested email robyn.hunt@accease.com asap with your full contact and other details.

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