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Home / Northern Advocate

Jonny Wilkinson: Disability awareness a hard yakka

Northern Advocate
18 May, 2017 02:12 AM4 mins to read

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How many people does it take to change a ... writer's block? Photo / Getty Images

How many people does it take to change a ... writer's block? Photo / Getty Images

Writer's block. Maybe four times a year I am impaired by it.

Given that I write a column every other week that's not too bad but today I needed inspiration. So, I shuffled round the news looking for some.

I soon found a relevant headline: "UN urges North Korea to improve disability awareness".

It's about a United Nations expert expounding on the rights of people with disabilities to be allowed access into North Korea.

While personally I wouldn't be craving such access, it is a laudable campaign.

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I think she or he has his work cut out, though. Hard yakka, when you consider that earlier in the week two Aussies were in the news for simply going to North Korea to get a hipster haircut.

Their goal was to dispel the apparent myth that haircuts are policed in North Korea. Judging by the esteemed North Korean leader's rather interesting haircut, it probably wasn't much of a challenge.

Nah, think I'll stay well away from that scene.

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I turned to social media to ask for suggestions. I got: "How the paper carrier keeps the paper dry", rather mysteriously from Sharon.

"Well, I give up, how does the paper carrier keep the paper dry? Is this a joke or euphemism?" I responded, waiting for the punch line.

In the meantime Karen suggested I write about the stupid rules around qualifying for equipment or modifications to make living in your house possible. Grrrr.

I rang Karen. I know her. Her son has Down syndrome and a heart condition that was misdiagnosed in his infancy which resulted in a very low oxygen saturation, meaning his bones are deteriorating rapidly.

"So what problems are you having?" I asked.

"Oh, you know, the same old b***s***" she said. "Daniel's condition is so changeable sometimes he uses a wheelchair, sometimes he doesn't.

``We applied for a housing modification so his wheelchair could fit in the bathroom and the occupational therapist gave us a stool!
"It's the same old story - if you're funded by the Ministry of Health life's a hassle. If we were funded by ACC, life would be bloody roses."

I talked with Karen for a while and suggested some alternative funding sources.

She listened politely and her response was one that I, and many others with disabilities, can relate to.

"I don't know," she sighed. "We're a bit funny like that, we don't like asking for things, we don't like grovelling."

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Fair call.

Simon suggested I write about Third World attitudes around disability framed by my own overseas experience.

Well, yes I did have small crowds of people following me, helpfully jeering and throwing rubbish at me, while I visited the interior of Indonesia some mumble-mumble years ago.

But when I look back, it was nothing compared with the conditions and societal treatment most of the local disabled people endured.

Sharon answered me about keeping the paper dry: "Putting a tarpaulin over it or wrapping in plastic."

So obvious, yet possibly too challenging for my imaginative powers to base an entire column around.

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Trish reminded me it was Sign Language Awareness Week. Sign Language is a vehicle of deaf culture, a language in its own right and New Zealand's third official language.

Even though we've been working with the deaf community over the last 10 years, I have to admit I'm still learning fundamental things about NZSL.

In a taster class yesterday I learned, for instance, that in NZSL the subject came first and the adjective came afterwards, similar to te reo Maori.

I also learned sign language can be ambidextrous, which is good for me. Being very left-handed, I wouldn't have a hope in hell of signing right-handed.

So these are my staccato-like snapshots of the disabled community as it rolled out today.

Thanks to all who helped out a blocked fellow member with your ideas.

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You've replenished and revived me with your input and reminded me of our range of causes and characteristics.

Harsh, historic, stoic, literal, dry (the paper!), and most of all resilient - we just keep on rockin'. Cheers team.

Jonny Wilkinson is the CEO of Tiaho Trust - Disability A Matter of Perception, a Whangarei-based disability advocacy organisation.

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