Most of the time I would agree that to focus on the ability of people who have a disability is a good thing. Yet, there are times when the disability really has to be acknowledged for the hideous and limiting thing that it is.
Losing more function can be frightening, depressing, soul-destroying, frustrating, not to mention bloody impractical! At the end of several weeks which included all of those things, there ARE some things to be thankful for.
1) I have an amazing partner who despite losing the last remnants of his ‘walking’ and ‘standing’, only managed to lose his sense of humour for a day here and there. Without that wit and comic relief, I’m not sure where we would be right now.
2) We are fortunate to have supportive family, friends and workmates.
3) There are some bloody awesome Norweigans out there who made the molift hoist equipment.
4) It doesn’t matter how stressed you become, the cats still give you cuddles. Sometimes two at a time.
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?
I laugh at Andrew frequently. Most of the time it’s for his wit. Take this one as an example. His father offered to make me a cup of tea. ‘No it’s fine, I can do it’, I say. Andrew’s dad comments ‘you’re both very independent.’ Andrew quickly responds: ‘No, I’m independent, she’s just stubborn.’
Laughing at his humour is politically correct, laughing at his disability is not. Yet sometimes, it’s hilarious. The worst part is when I get the giggles and can’t stop. He’s trying to concentrate to move his body of molasses where he wants it to go and I’m cackling. This isn’t a particularly welcome distraction and inevitably he either hits me in the head with a pillow and says ‘stop it’, or he starts laughing as well.
Tonight I was watching Spicks and Specks (repeats) and it featured Francesca Martinez, a comedian who describes herself as being ‘a bit wobbly’. I’d never seen her before, so I started looking around on youtube. I ended up watching these two hilarious skits, not from Francesca, but from former Spicks and Specks host and well known Australian comedian Adam Hills.
Both are priceless.
Adam Hills on his artificial foot:
Adam Hills: Best thing I saw at the paralympics:
Christmas came early and it seems only fitting that Andrew tells the story:
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:
15 days on the top floor without the call button on the lift. You cannot walk down the stairs, although someone who is downstairs can send the lift up for you. What would you do?
Tonight, I’m setting my readers a challenge. What is the most imaginative way you can think of pressing the lift button on the first floor when you can’t leave the second floor.
Here are the constraints of this challenge. You must imagine:
- your walking is so impaired you use a wheelchair to get around
- you have limited muscle strength
- you only have what you have in your home now as materials
- there is an open balcony between you and the first floor lift button. (If you were able to hang from the balcony like a bat, you can see the call button on the lift)
My first suggestion was a slingshot propelled from a long pole with a mirror attached so you can see.
My second suggestion is to train the cat to walk down the stairs and leap at the button, hop in the lift and return to the top.
My first suggestion is far more likely to happen.
Ok, let’s hear it! How would you send the lift up?
Apparently some cats are afraid of wheelchairs. I’ve certainly seen some dogs be very wary of the man with the wheels.
Gesso, our deaf white cat, is anything but spooked. Here’s a short video of him sitting while Andrew moves around freely. Even when Andrew does a wheelstand he shows no sign of getting off.
I really need to have words with my cat about his remaining lives. He’s not yet one and he’s already used up 2 of them. Last I read folklore said that a cat got only 9. With 7 remaining he better slow down and average one every second year otherwise he is going to be a very short-lived cat.
Yes I really need to have words with Gesso. If only I could sit down and explain it to him. Then I remember that he’s a cat. He doesn’t understand English – except for the words Breakfast, Dinner, Up, Off and his/her name. I doubt I can discuss his recklessness with that limited vocabulary. More so, because that’s what most cats know however Gesso, doesn’t know any of them due to his deafness.
His first life was expended on Christmas day 2011. He was only months old and his first life was whisked away from him. Andrew would say that he in part contributed; which I think is only fair. While he doesn’t understand ‘Get out’, ‘Not in the kitchen’, ‘Go’ or ‘Scoot’; he should by Christmas day have understood that the kitchen was a no go area as he frequently gets squirted with a water bottle upon entry. This may seem a little harsh but it is a matter of safety and not just for the cat. With knives and hot plates Andrew can’t afford to lose his balance in the kitchen. I think this is while the OT thinks he should stand in the kitchen. On the flip side, it’s a good place to stand. There’s a bench either side to grab for balance; standing means he can reach stuff out of the cupboards and there’s a bit of walking to be down; a few steps to the fridge, a few back to the sink etc.
Well, Gesso got under one of those feet. If had been my foot which landed on top of him, it would have immediately moved off it. Yet this was a case of the disabled human meets the disabled feline. Gesso couldn’t hear Andrew to get out of the way (although there’s nothing wrong with his vision the little bugger!) and Andrew’s feet don’t do ‘choppety-chop’ speed. Gesso bit Andrew quite hard resulting in a little trail of blood from the kitchen all the way back to the bedroom. While the little white fluffball was a little confused as to what just happened; he was ok.
His spent his second life the other night, again in the kitchen. Months later he still hasn’t figured out why he gets squirted, or he doesn’t care. Before I go on, let me assure all readers that following this incident Gesso is fine.
There was a pot of pasta and a second pot of pasta sauce on the front two burners of the stove. (Easier to reach from the front while in the wheelchair; they may not have been there had he been standing!) Neither of us was in the kitchen, we were both in the living room.
I saw a white fluffy object appear on the kitchen bench, go across in front of the pots and very quickly down the other side. Then I smelt something horrid. Burning hair. I scooped Gesso up to find little black dots down his front paws and on his chest. This was where the ends of his fur had been singed by either the gas or the hot metal of the pot. I threw him in the bathroom sink and turned on the running cold water. I figured that’s what humans do for burns so it should be ok for a cat.
Gesso was none to pleased in his demeanour about being put under the water however physically, tolerated it rather well. He didn’t scratch, just a lot of wriggling. I tried to check his paws but that was a little tough. After pulling him out of the sink, we were able to inspect and find that three ‘toes’ were decidedly pink. I put him back under the water. Having experienced it the first time, he was more cantankerous the second time and I struggled to keep his foot under the running water. By this time, Andrew was ready and waiting with a big towel. I handed him the sopping wet cat and he bundled it up. After a moment, he handed me ‘the baby’.
Following a rather crude drying method (fierce rubbing with the towel) I released Gesso to lick himself dry. (Typical batchelor flat: no hair dryer! Then again, I don’t have one at home either.)
So that was Gesso’s eighth life. I saw him the next day. He ran away from me.
I saw him the day after. He has developed a small blister on one paw however he’s eating an walking normally; although it’s obviously sore to the touch which I found out upon inspecting it.
For anyone who has been reading my blog for a while, I’ve just realised that you may think Gesso has used up 3 of his lives not just the 2 I’ve described here. I supposed the pink oil paint was dangerous had he had a chance to eat any of it off his paws before Andrew had bathed him. However, I’m hopeful that doesn’t count, for the little bugger only has 7 lives left and his not yet one year old.