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.

Dating disability style

Andrew and I recently celebrated our 2 year anniversary. It got me thinking about dating disability style. If someone said to me, I’m thinking about going out with a guy in a wheelchair, what advice would I give them? This is my somewhat tongue in cheek list with a few serious thoughts thrown in.

Don’t be afraid of heights

You know those things in the ceiling which emit light? Well, it may usually be men who fix them but if you’re dating a guy in a wheelchair, let me tell you now that you will be climbing on that ladder with light bulb in hand. You will also be putting and retrieving things from the tops of cupboards; hanging pictures; removing curtain rods; repairing blinds. Get used to being the ‘tallest’ person in your relationship and develop a love of ladders and chairs – you will need it.

While not height-related, another ‘man job’ you may have to do is putting air in the car tyres. I know, my mother would be horrified. She always says, ‘I don’t do garbage and I don’t do tyres – they’re you’re father’s jobs’. What I’ve learnt is that tyres are really not that tedious; the hardest part is finding a service station with a working air guage.

Check your figures

Before you get very excited and launch yourself at your man with a hug, check the weight bearing load of his wheelchair. Sadly some of them aren’t designed for you to sit in his lap, so perfecting the lean over hug is a must.

Ask!

If you don’t know why he’s in a wheelchair, ask him. A person with spinal injury will have different needs to someone with muscular dystrophy (Andrew has something very similar to muscular dystrophy). If you’re afraid to ask, or he’s hesitant to discuss, personally, I’d run for the hills. Someone who is able to freely talk about their disability and its impact on their  life has probably reached a greater level of acceptance than one for whom it is a touchy subject.

Rediscover the romance of simple things

Sometimes when it is not possible to do whatever you want, whatever you do becomes just that bit more special. I still remember the day that Andrew picked me up from work and casually said – do you want takeaway? We drove to a Thai place, picked up some food and then he said, why don’t we go eat it by the water? We found a place to park which had a nice view of the bay. It wasn’t until he pulled out plates and cutlery that it twigged he’d planned a ‘car picnic’ at dusk all along.

Think big

I know I just said that you get to enjoy the simple things as some others are off limits but this point is about questioning the impossible. There are many outdoor physical activities which are certainly possible, especially if your partner has upper body strength. (I missed out on the nice torso muscles :-( ). Sometimes you may find it’s you being challenged and not him.

A while ago I bought Andrew a surprise gift of a Harley Davidson ride (as pillion). Upon giving him the gift he said he wasn’t sure whether his lateral muscles were strong enough to hold on. I rang the company back. They suggested swapping it for a trike ride. Great. Now I had to go with him! I’m not sure who was more nervous that day – him or me!

Grow a wicked sense of humour

If you don’t already have a slightly odd sense of humour, dating disability style will sure help to develop one. I worked for 10 years with people who are blind or have low vision and now with children who are deaf or hearing impaired. One things I’ve found is that most people with a disability have a remarkable sense of humour. I do recall one guy I worked with who, if placed in a humour competition with a termite nest, the nest would win hands down… but he was an exception.

Here’s two examples of Andrew’s dark sense of humour.

While shopping one day, Andrew was staring at all the motorbikes. He loved riding motorbikes pre-muscular dystrophy (hence my aforementioned gift). He turned to me and said:

I love to roll past these guys and say to them: ‘I used to ride one of those’. The look on their face is priceless.

If you think that’s a little dark, well, the second example is worse. He once told me that he was bored at home and chatting on a disability forum. He posted a message on the forum saying that The Gap (a cliff face in Sydney known as a suicide hot spot) was discriminating against those in wheelchairs as there was no ramp.

Thankfully someone else in the forum had an equally wicked sense of humour and wrote back:

I have found a suitable ‘dispatch’ point for you in the Blue Mountains. Should you wish to kill yourself, you’ll have to drive 2 hours west.

Have fun

My last tip would seem fairly obvious in any relationship however I’m including it anyway. Lack of walking doesn’t equate to lack of fun. In the two years I’ve had with Andrew, 90% of the time, I’ve had a ball! Who could ask for more than that?


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