Category Archives: Disability
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:
Today I had the delight of attending ‘management training.’ Hmm… do you detect a note of sarcasm in my typeface? Well, you would be on the right track. Actually, it wasn’t that bad. Of all the training I have been to, it was probably one of the better training sessions on the challenge that is ‘managing people.’ Well, that was until the end.
Our lecturer decided to end with an “inspirational video.” The point was… ‘think management is hard, it ain’t nothing compared to this guy.’ He proceeded to show a video about a father’s promise to his son to participate with him in a triatholon. His son had a significant physical disability so he had to push his wheelchair as he ran, tug him in a ‘inflatable’ as he swam, pedal on a tandem and so on.
Please don’t get me wrong, the story is of course inspiring.
But as the conclusion of management training, its inclusion didn’t sit right with me.
Firstly – and entirely inappropriately – for some reason as the first piece of footage began to play of the father pushing the son’s wheelchair, Andrew’s voice entered my head. There’s a small hill on Andrew’s block which I sometimes push him up. Ever the practical joker, as I do this, Andrew sometimes exclaims – in a broad scottish accent – PUSH, BESSIE, PUSH! I was watching a serious video but I think I had a strange smile on my face thinking about Andrew’s antics.
However, more seriously, the video featured a very religious song about someone being their ‘redeemer’ and concluding with a Bible quote. I found it an odd choice. There are plenty of inspirational stories out there which have no religious affiliations whatsoever. Management training is often about recognising and being sensitive to difference. As I said, an odd choice.
So, I’ve included two of my favourite inspirational youtube videos below. The first, Arthur’s Inspirational Transformation many of you may know. It has had nearly 10 million views. The second is a video featuring Elizabeth Glasser and her vision of eliminating childhood aids.
Check them out. What’s your favourite inspirational video?
Warmth appears to be relative. I’ve travelled over 1000km north of Sydney to Brisbane and the temperature has risen by a couple of degrees yet the natives here (Andrew’s parents) are cold! They prepared the spare bedroom for us, complete with electric blanket and two quilts within one quilt cover. As much as I appreciated the gesture, trying to sleep under that quilt was similar to have a contoured concrete bunker on top of me. I opted for just a sheet. Andrew tried the concrete bunker. A couple of hours later, he woke me up – I can’t move! The quilt was abandoned.
The fur children are enjoying different levels of luxury. Licorice and Saffron have the luxury of having a friend come to my place and feed them, so they really seem very happy. As am I as my friend even sent me a photo this morning! As for the boys, they have gone to ‘the mothership’. Gesso has shown my parents his love of sleeping on appliances by locating an old computer monitor in the back room and adopting it as his home. Unlike my friend – the mothership – doesn’t take and send photos despite the fact she has an iphone! It’s a very well contoured and sleek paperweight for her handbag.
The flight up was packed. Andrew tells me that they never book the seat next to him as once transferred into the plane chair he can’t move until we reach our destination. I did point out that we may have to shuffle across seats and let the guest have the aisle – should a guest arrive. But Andrew looked at me innocently and says ‘but they are entitled to the window seat.’ Hmmm, he has clearly missed my point. Yes, that’s true but I doubt they will be thrilled that there is an impediment to his/her escape should the plane crash!
Sure enough, a passenger arrived. She climbed over Andrew. He later confided in me that he had thought to say ‘ I think we should know each other a little better before we do this.’ I was thankful he didn’t!
She was good humoured about it all. At the other end, we tried to let her out first. Andrew ‘moved’ his legs. She was still seated. ‘That’s about as good as it gets!’, I exclaimed and started laughing.
On a serious note, I have to say that the Virgin crew are so helpful and respectful. Climbing onto those seriously low ‘plane’ wheelchairs is never easy, or particularly graceful, but the crew do their best to assist. So very much appreciated!
After about 6 months in the making, today I finally finished my first – and possibly last – quilt. This quilt was born out of an idea from Andrew: that we should make a quilt together.
He had his own ideas. A sea of aqua, turquoise, teal, blue and violet. A multitude of bright large format squares. I on the other hand wanted my usual earthy and autumnal tones. On the colour front, I’d say he got the lion’s share.
The construction didn’t quite take the format Andrew had expected. The pieces grew organically after the selection of the tree as the centre piece. We stencilled it with lumiere bronze paint together and I think at that point, he probably realised this wasn’t going to be a quick project. It was also not going to be without damage – at that particular stage, little flecks of bronze paint in his bathroom where I had washed out the stencil.
While he may have won on colour, I triumphed when it came to whimsy: the lizard in a teacup with a licorice allsort my favourite of the added amusements.
All cats feature: Saffron as a colour (poor Saff, it was the best I could do), Licorice as the aforementioned sweet, Pickle as his ginger self and Gesso as a purple squirrel. (The last act of the quilt was gluing on his eye today).
The black cat in the tree is the one Andrew wants that we don’t have.
Lizards also abound – some with functioning legs and some without. It is these unique references which make this truly one of a kind. A quilt that could only ever be the story of the two of us.
For those who have see my art over the years, this probably comes as no surprise. Anything I create is made for the purposes of self-expression rather than for it’s aesthetic qualities.
The idea of buying a quilting ‘kit’ holds no attraction at all – unless there’s someone out there selling Alice in Wonderland tribute meshed with wheels, cats, curly-ques and lizards?
As this is my first quilt I could hardly draw on any quilting skills as reference, so I instead returned to my mixed media toolkit.
On the white rabbit – which went purple – I had to turn to my long suffering sewing teacher for advice.
I stuffed him with toy fill, only he kept springing a leak. With some cajoling, he finally agreed to keep his innards, well… within.
I managed the white backstitch outline but the point of his umbrella had a distinct wonkiness. The umbrella you see in the finished product had some expert intervention to correct it’s trajectory!
I discovered that I had insufficient patience for large areas of hand-quilting – although I must admit it does have a strangely meditative quality. The small area of pink spiral patterned fabric on the top left is one of the few spots where I did try out the old fashioned way. While I could claim this was out of wanting to be traditional, in truth, it was just testament to my lack of free motion sewing skills. In the end the only area I was happy to free motion were the tree roots, for it mattered not how bumpy and gnarled they became as I covered up each of my mistakes.
This free motion incompetence meant that I completed around each branch of the tree using a walking foot and turning the fabric. It was slow work which at times had me cursing Stencil Kingdom for not selling the tree stencil in a smaller size!
Other features are tiny in comparison – like a small trio of playing cards, or a teapot in the bottom right hand corner. Still I think they add something to the quilt and when you view it in black and white, it only serves to emphasise that together with the tree it’s these little areas of ‘light’ that pop out from all that purple.
Andrew still protests that it wasn’t bright enough – he wanted more pink and more yellow and red gingham (yes, can you believe it?). I on the otherhand wanted something a little less vibrant. That neither of us felt the colour is quite right, just goes to show that we did achieve a representation of us. It is neither his bright bold cheeky self, or my more muted tones, but somewhere in the middle. Today I looked at the quilt with more than a dash of pride. I’m not quite sure how I got to this point… how those ideas tumbled out… but I do know that we’ve created something we will both cherish for a long time. I have to say that I thought Andrew was a little nuts when he suggested we make a quilt. I’m glad he did.
This quilt would not have been possible without the help of a special few and some amazing art suppliers out there.
I have to include a special thanks to The Stencil Kingdom, as without their business, that beautiful tree focal piece would not exist. Whoever was nutty enough to make a stencil with that many little twigs, I thank you. I’ve been buying stencils from this company in the UK for a number of years to use in my work. I don’t get them that often as postage from the UK is expensive however whenever I do, I add another tool to my art stash that’s definitely a keeper!
Fabric & Threads: Most of the fabrics have been sourced from Busy Bee Sewing, with just a couple of the Batiks from The Quilters’ Store. The stranded cottons and embroidery threads also came from Busy Bee and I just supplemented with a few special pieces from The Thread Studio in Western Australia (that gorgeous thick swirl at the bottom) and some I picked up from Room For Threads at the recent quilting show. (To the lady from this stall with the funky red glasses and clear passion for quilts, I assure you that both my and Andrew’s name and the date and the location are going on the quilt. Who knows where this quilt will end up after we are dead – hopefully not in the trash – but I agree it’s a lovely habit to get into signing and dating quilts just the same as we do other art forms).
Applique & Applicuts: To Kim Barter of Applicuts – a huge thank you. When I asked for a 3 inch squirrel as a special order, you obliged… the same with those doves! I know you weren’t sure what the hell I was going to do with them, or that they would become stencils in their own right, but I thank you for humouring me! (For anyone interested in the mileage I got out of a tool intended for applique: check out my earlier post).
Painting & Art Supplies: Thankfully, I really didn’t have to shop much – all the things I’ve accrued over the years came in handy. My old faithfuls – caran d’ache wax oil pastels – got a workout as well as the Golden Fluid Acrylics. Apart from some print paste, I really didn’t have to buy anything to paint that fabric. If anyone does need supplies, I get my Golden Fluid Acrylics from Alex at The Sydney Art Store. Actually, Andrew and I get almost everything art-wise there because it’s accessible (a rare thing for an art store) and Alex is just so helpful. I’ve even had times when Andrew has sent me in to buy a paintbrush and Alex has been happy for me to pluck a few out and go back out to the car so Andrew could choose for himself and then run back in to buy them.
To Bev Barter – dressmaking teacher extraordinaire. I’m not going to say that you are amazing woman, or a brilliant teacher, or an absolute hoot for company as I don’t want ANYONE else to want your teaching services for fear I will have to make way for new students! I want you to be stuck with me.
Seriously, thank you for fixing the licorice allsort, the rabbit’s umbrella, for teaching me french knots… oh… and how to quilt enough to get by on this project. Not that many people would have let a student do this as their first project. Which just goes to show you truly are one of a kind.
To Licorice, Saffron, Pickle and Gesso, thank you for all your assistance during the project. Sitting on the quilt was so helpful. Really.
Lastly, to Andrew for having the idea in the first place. For drawing that bloody woman, the white rabbit, helping to paint the tree, and all those little helpful comments along the way. Sorry about the pins I left in your couch, or all the threads that went into your vacuum cleaner! I know that you will forget all about these once you get to sleep under it and you are toasty and warm. You are a delight and a bugger at the same time. On this project I can truly say the idea was not mine alone, but mine.
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.