When disability is no slow dance

Andrew and Gesso

Can you imagine watching the person you love lose their ability to be independent?

I know some of you absolutely know what this is like.

After working in the disability sector for a while I know that much is done to show what people with disabilities can do. Slogans such as ‘don’t ‘dis’ my ability’ being a perfect example. People I know who have a disability often inspire me with their resilence, persistence and ingenuity.

Yet, some days there’s no pretty side. It’s just bloody hard.

Regular readers of my blog will know I’ve been dating Andrew for a couple of years now. Over the last couple of years I’ve watched as Andrew’s muscles have further wasted away. Things he could do two years ago, he absolutely can’t today. I remember about 18 months ago, Andrew and I attempted to ‘slow dance’. Looking back on it, how ridiculous were we? A guy who couldn’t walk unaided, cannot lift his feet properly, trying to slow dance. Andrew got himself to vertical. He held on to a table with one arm and to me with the other. We had the music on – candles too – but we didn’t actually move!

While slow dancing is clearly history, I’m not ready to let go of Andrew leaving the house independently just yet.

It’s hard to describe what Andrew goes through to get in and out of the car, so we took a video. Lately, it’s been getting harder and harder. Some days, Andrew just physically does not have the muscle strength to lift the wheelchair into the car. So he stays home. 40 is too young to be confined to the house! 

The hardest thing is there are options out there, he just can’t afford them.

We’ve tried approaching charities for help with vehicle modifications. It’s been tough. I can understand why there are such high frustrations in the community of people living with disability. I got sick of being asked – ‘is it for your son?’

No. It’s my boyfriend.

‘Oh, we only help children.’

Or worse:

‘yes, we can help, but we have a 2 year waiting list.’

So, we are trying to raise the money ourselves. I’ve never attempted to raise money for anything before. While I have always worked for charities which rely on donations to keep going, I’ve never been the one calling charities asking for help.

We first looked at the Abiloader, which was going to cost at least $15,000. Now we have found a plan B, which is $8,500.

Please, watch the video and if you are moved by it, please help by making a donation and/or sharing it among your friends.

Thank you.

Link to video or view below.

You can read more of Andrew’s story on his blog.

Donations of support can be made via:

St.George Bank of Australia
Fund raising account number: 485 558 044
Branch/bsb number: 112-879
Account name: Geoffrey Andrew Grant
Andrew’s email address if thenihilistfish@gmail.com if you want to contact him or just ask him anything. If you subscribe to his blog (or if you’re already on mine!) we will keep you updated.

Inventions and disability

Graeme Innes, Australia’s Disability Discrimination Commissioner has written an excellent – funny – article over at ABC’s ramp up about the innovations we have – thanks to people with disabilities.

I have witnessed first hand how ingenius people with a disability can be – and learnt a few things along the way. Thanks to a person with a disability, I know that a skateboard is an essential item to have for moving furniture with ease. I know that a walking stick can also be a ‘curtain closer’, and object lifter and my favourite of all – an arm extension to drive your mouse. Yes, I have witnessed someone use the end of a walking stick, held across the room, to push the computer mouse, to navigate to the top menus and select shut down on a computer.

While Graeme is detailing the inventiveness of those with, and those helping people with, disabilities, he is also demonstrating another great quality many disabled people have – a brilliant sense of humour. My favourite example of this harks back to when I worked at Royal Blind Society and actually I think Graeme may even have been chairman at the time. A person phoned in and wanted to know if there were any advantages in being blind. We asked around the office and one of my colleagues quickly replied ‘you never have to be designated driver.’

But seriously for a moment, Graeme has some serious points. Having a disability is expensive. I’m sure that most people are not aware that you can buy many second hand cars cheaper than a new wheelchair. Adaptive technology for computers also comes with a hefty price tag. You name the disability and there seems to be an associated – and large – cost. What is to be done about this? I like Graeme’s conclusion:

What shall we do?

Go on hunger strike like Anna Hazare, the anti-corruption campaigner in India? Not me; I like my tucker too much.

Withdraw our labour? Well that won’t work; half of us don’t have a job.

Blockade our parliaments? Umm, that could be a problem; many of us can’t get in because there is limited physical access.

No, bugger it. We’ll just take back our inventions. No phones, no clicking lights, no ramps. Let’s see how society functions without them.

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