Did you know that wheelchair cushions have a gel insert designed to cushion your bum? Well, they make a slight well in the cushion, which, the cats tell me, is the perfect sleeping spot. Here is Andrew trying to persuade Pickle to get out of the chair.
I wrote the blog piece below 2 years ago and not much has changed. I’m still climbing on chairs to reclaim items out of reach. The latest of which was a milk jug. A square milk jug. Now, square may be aesthetically pleasing but trust me, it’s not a particularly functional milk jug! If he’s going to ask me to climb on things it could at least be for a fully operating piece of equipment… no?
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.
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.
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.
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?
Christmas came early and it seems only fitting that Andrew tells the story:
The car has been at the engineering shop for 2 weeks. The lifter has landed on the roof but apparently the seat modifications aren’t completed. Like nearly everything in the disabled world; it is happening very slowly. I am getting pre-Christmas crankiness.
Andrew and I went to the shops today – in my car. The wheelchair lifting part was all good – when we’re together that’s my job and I manage it with reasonable ease. The getting in and out of the car without a fixed transfer board – slightly more tricky. Not to mention that my car is somewhat smaller in the door cavity than his – really not ideal at all.
Pickup of the car is scheduled for Wednesday. I have my fingers crossed for Wednesday. And my toes. And my legs. I’m crossing everything.
In the meantime I’ve started to stitch the wheel onto the quilt. My first attempt looked like a pizza. A blue and purple pizza but a pizza just the same.
My second attempt, I cheated. I used the wheelchair wheel and like a 3rd grader – traced it! Harder than you may think as the wheel is not perfectly flat.
Then when it came to the stitching I found that the top layer was all puffy. All those hand basting stitches to keep the batting, backing and top together weren’t holding it down enough. So, with some swearing under my breath, I set about unpicking 2mm satin stitching.
I dragged the quilt to the armchair – I may as well be comfy.
Licorice appeared. Licorice was persistent. We reached a compromise. She could sit on the piece of fabric resting on the footstool as long as I could hold on to the end I was still unpicking. Minutes later – Saffron wanted her share of the quilt. Nevermind that Licorice was already sitting on it; she just climbed up and wriggled her way in. The funny part was watching her slowly descend. It wasn’t a quilt – it was quick sand. For Saffron had decided to sit on the quilt but between the footstool and my on the armchair. Eventually I gathered up enough of the fabric and pushed her enough onto the footstool that she stopped sinking.
Of course I just had to take a photo.
The wheelchair may freak the cat out, they said. They may run from the wheelchair. It may be big and scary.
To that, codswallop say I!
Gesso is doing his usual and running away from me again. I go to pat him, approaching slowly and so he can see me coming. He runs away.
‘Hop in the wheelchair’ says Andrew.
I jump in. Gesso stops and looks.
Andrew prompts: ‘Give him the signal’.
I move the fingers on my hand like a quacking duck. (Andrew has been trying to teach Gesso that this signal means come. Teaching a deaf cat – good luck with that. A regular cat is bad enough at coming when called!)
To my surprise, this bundle of white fluff, runs back towards me. I pat his head. He is no longer terrified.
So it would seem that Andrew’s theory is right. Far from being scared of the wheelchair, as some feared he would be, he is afraid of bipeds! How strange I must seem – this tall creature that moves quickly through the house.
It’s been a tough couple of weeks catwise, what with losing chilli and now, since Tuesday, Saffron having acute cystitis. She’s been to the vet – TWICE – and is going back tomorrow. Third time lucky? She has improved ever so slightly (meaning less blood; still frequent – small – urination).
The upshot of all this is Saffron has been confined to the bathroom for the past few days. I’m sure that this freaks her out a little more, however, she is wee-ing (or at least attempting it) so frequently that I can’t trust her outside the bathroom.
Licorice is highly unimpressed as she too, has been calling the bathroom home for the past 4 days. (The girls don’t like separation and I have few other places to put a litter tray should I lock Licorice out of the bathroom). So I am left with one cat who squats frequently and one who is just plain grouchy. She lets me know of her displeasure at every possibly opportunity.
So it would seem there is one member of my furry flock left; is he grumble-free? Well, bipeds are most certainly ok with Pickle. As far as I know, his bathroom business is all in tact and he has the run of the house. So all in all, I think the ginger ninja is a happy camper. Here’s a photo I captured of him earlier this evening.
My text message conversation went something like this:
Me: “I refused some of my pay today.”
Andrew: “What??? Have you gone soft in the head?”
Me: “No. I’ve just seen the end of year forecast for work. We are facing a massive shortfall. We have over 300 deaf kids to help and I’ve just seen a letter from the state government saying we are only funded for 45.”
Andrew: “Oh. Got it now. Not soft in the head at all. As you were.”
This news comes around the same time that Andrew and I finally get to drop off the car to have the wheelchair lifter fitted. 6 months ago, I rang charities asking for help to fundraise for this vital equipment. One charity said if we could prove Andrew had his neuro-muscular condition before he was 18 then they could help… but there was a 2 year waiting list. Another told me how hard it was to get funding and then sent me information about a government scheme. The scheme was only for families and even if we had been eligible, it was a drop in the ocean compared to the real cost. I rang another charity – yes, we help with making vehicles accessible for wheelchairs – but only for children!
Despairing that our need didn’t seem to fit into anyone’s criteria, I didn’t know where to turn. I told my boss and my colleagues what was happening. They didn’t blink.
In the coming weeks, friends, colleagues and people who were brand new to the Organisation, and didn’t know me from a bar of soap rallied around. People gave up time after work and on the weekend. Some donated goods for the garage sale; others came to the fundraising dinner; a group of ‘cake bakers’ sprung into action; a sausage sizzle was organised along with a cheese stand. Many gave private donations. I was absolutely blown away.
Today, someone asked me how the Shepherd Centre was different to other services. It’s hard to answer – not being an employee, a recipient, or an observer of those other services. But I felt I could say one thing with confidence: it’s not in the Shepherd Centre spirit to turn people away. If help is desperately needed, help is given. The things people did for Andrew and I – on their own time – was consistent with what they do for our families. I admire their passion and dedication and think myself lucky to work with such a fantastic group of people.
My friends and colleagues at The Shepherd Centre supported Andrew and I in ways for which I can never thank them enough. Giving up a little of my pay was the least I could do right now.
If you are thinking about giving a donation to a charity this Christmas, please consider The Shepherd Centre. For more information see the following article:
Disclaimer: the above is my own personal opinion. I would also like to stress that all assistance provided to Andrew and myself was on people’s own time and independent of the Organisation.
How fitting that the Weekly Photo Challenge is ‘Thankful’. It’s been playing on my mind all week. What I am thankful for won’t be a surprise to many of you. It’s for 2 rather expensive pieces of metal! (For anyone who is new to my blog you can find the full story here).
Of course, I love these pieces of metal not for what they are but for what they will enable Andrew to do. The first arrived a little while ago – a wheelchair that was ‘lifter friendly’. (The only lifter that suited Andrew’s present chair was $14,000 by itself, so we opted for a new chair and a different lifter which combined was slightly less expensive).
This folding chair is also in colours matching the cats. Gesso white and Pickle orange. This was not deliberate. Indeed Andrew seemed quite miffed when I pointed it out.
The second hunk of metal – a wymo wheelchair lifter – is booked for fitting to the car on Friday. After 5 long months, it can’t come a moment too soon. More and more Andrew has been struggling to leave the house without a wheelchair assistant at either end. In the afternoons when he’s used up a lot of the energy he has, it’s much tougher and by evening it’s impossible.
But I don’t want this post to be about how hard it is. Rather, it should be a ‘hats off’, ‘glasses raised’ and overwhelmingly tight hug to all of you who helped us to raise the funds for the equipment. When I think about the generosity you have shown Andrew and I, well… I still get very teary. Help came from family, friends, colleagues and strangers. You sent messages of support that made us feel like this was achievable – and achieve it we all did. For that, I will always be thankful.
I can’t understand it! They both live in Redfern. They both frequent the park. They both have little bellies. Could it be the pig has more hair? The pig is more handsome?
I’m calling on all my friends to help end this injustice right now and like the Wheels on Wheels Project Page. At least help Andrew make it to triple figures and avoid the shame of being far less popular than a pig.
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.’
‘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.
Donations of support can be made via: