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.
Regular readers of my blog will know that I occasionally write about accessibility challenges with my tongue firmly planted in my cheek.
This blog entry is different. This is about a place Andrew and I had the privilege to stay in for 2 nights: Uki Guesthouse. Uki is a little village in northern New South Wales.
It’s close to the rather infamous Nimbin which is synonmous with hippies and hash. Andrew and I drove through Nimbin to get to Uki and I took this photo of a house in the main street which really summed the place up.
Uki certainly had a different feel to Nimbin, although it was clear there was a very strong sense of community. The guesthouse is an old Queenslander which has been majestically transformed into accommodation suitable for people with disabilities.
For my overseas readers, a ‘Queenslander’ is a style of house typically made of timber, on stilts and with a wrap around verandah. The design is supposed to help keep cool in Australia’s more tropical areas.
The house was renovated about 7 years ago to ensure the best possible access.
Upon our arrival we were greeted warmly by Jules. She took us on a tour and showed us a couple of rooms and bathrooms and let us pick which suited us best. Pick up jaw off floor. This is the day after the bed shifting spiderman adventure and we are looking at a wonderfully accessible bathroom… not just one but 3 of them and we could have our pick! Talk about chalk and cheese.
We picked out a bedroom with tongue and groove panelling painted white going up to a very, very high ceiling. Jules told us we could move the furniture around in the room to suit us. You could turn the light off without getting out of bed – such a simple thing but just bliss.
The guesthouse also has an accessible pool. There’s a walk in ramp or a hoist and grab rails all around the pool. It’s the first time Andrew and I have been swimming together. In the pool Andrew could move his legs in ways I’d not seen before. The grin on his face was gorgeous. With the aid of water, he almost ‘picked me up’ in the pool. For me, it was one of the best parts of his 40th birthday. I felt like a normal couple in a swimming pool on a special birthday.
When we were done swimming, we ate out on the deck with a view of Mount Warning as the sun was setting.
As if all that wasn’t special enough, Jules and Maggie cooked a magnificent meal for us for Andrew’s birthday. It was prepared with care and pizazz. It was perfect.
It was also the last time Jules and Maggie were to play host as the Guesthouse was up for auction on the Saturday after we left. I have no doubt that should new owners choose to continue to run Uki Guesthouse as a B&B, Andrew and I will be back. The house itself is wonderful and worth the trip.
However, the reason I used the word privileged to stay at this place earlier in this post, was because of Jules and Maggie. These two women made us feel so welcome and so comfortable in their home. We philosophised, we laughed hard, and we got to share a home created out of Jules’ and Maggie’s vision for universal access. It is indeed, a very special place.
A while ago I wrote a blog post: The Secret to increasing blog traffic. I’d had a spike in my visitors and had just blogged about dating disability style, so attributed the rise to people searching for disability (it couldn’t have possibly been the word dating).
At the time, a few of you wrote and told me of your bizarre search terms hitting your blogs. Flossie found there are a lot of people out there searching for ‘stationery’. Oldcat pitched in with visitors to her blog searching for ‘Dragon Man and Rat Woman Love Connection’.
Well, this weeks sees some new peculiarities coming up in my search term stats. There’s little I can say other than print them. They have me mystified.
- Belly button line preservation society
- a little dodgy purple giraffe, and
- cloak banshee ninja madness covered in fur.
Take for example the photograph to the left. I couldn’t resist shooting a pic of the no bicycle sign with not one, but two bikes attached to the bottom. Only in Australia!
The second example was not quite as funny. Andrew and I were trawling the carpark for a space. There were a number of standard parks available, however Andrew needs to use either the wider wheelchair park (so he can get the chair beside the car) or one on the end where no one can park him in.
Finally we located two wide parking spaces reserved for people with a disability. One was taken, the other was thankfully free. As we pulled in we both noticed the guy parked in the first disabled space. He was standing beside his SUV putting on a wetsuit.
Now that’s ok, you don’t have to have ‘faulty’ legs to qualify for a disabled car space. You can be capable of standing. You could have a lung problem limiting the distance you can walk; or something else not immediately apparent to the eye.
I said to Andrew as we pulled into the space next to it… ‘leave it, I think he has a permit.’ (Andrew had vowed long ago never to get into a stoush with anyone sporting a permit… no matter how sporting they looked).
My words were too late. The guy was putting on that wetsuit with just a little too much athleticism. Andrew piped up: ‘Hey mate, you know you’re parked in a disabled spot? Do you have a permit?’ A simple yes would have sufficed.
He didn’t go the simple route.
Instead, he started to rant ‘What’s it to you? You better watch the way you talk to people; it’s none of your business where I park… What are you complaining about? You got a park. And yeah, I’ve got a permit’
There was no denying it. Andrew was rankled. His ire had been pricked.
It was maddening to watch this guy continue to put on his wetsuit, pick up his surfboard and run a few hundred metres down the beach.
I try to give people the benefit of the doubt however in this case, I remain convinced that it certainly wasn’t his permit, which really annoys me. Actually that’s a bit tame. It quite frankly, pisses me off.
We did proceed to have a fantastic night on the promenade taking photographs; once the steam coming out of Andrew’s ears subsided that is. I thought I was over it too. Then I came home last night to see that Andrew had posted his frustration on his facebook page. A number of his friends – some disabled, some not – joined in his rant. This only ruffled my annoyance once more. Indeed so much so that I spent a good half hour reading government websites about how to make complaints about people exploiting the system. (Apparently I can order some government sponsored flyers which say something like ‘being lazy is not a disability.’ Hmm… yeah, the flyer on the windscreen is going to make a great deal of difference. Unless, it comes with a very strong adhesive so they have the message permanently planted across the window.)
If they had a permit, would I want to stick a flyer under their wiper? I’d find that tough. What if they genuinely needed the space and I’d judged them too quickly? I feel for those who have been heckled because they don’t have a wheelchair, a cane or crutches. They could have only have 20% of their lungs working. (If that were the case I doubt they’d be running down the beach with their surfboard though). But I also know – ok, suspect – that the number of people using someone else’s permit is plentiful. Perhaps I should make my own signs.
‘Your permit is for the cripple; don’t leave home without him!’
Ok, I think I’ve got that out of my system not. Anger is a short madness. Well at least according to Horace it is.
I have a flaw. Sometimes I open my mouth before the words pass my brain. I am sometimes brutally honest. I remember one day at work sitting in a meeting with a woman who didn’t shut up. She spoke at light speed and barely paused to draw breath. It was nigh impossible to get a word in that conversation. Strangely we were discussing a campaign which had at it’s heart, symbolic silence. The woman went on and on about which celebrity we could get involved; who we could get to be silent and who would pay to see those people be silent. In one of my classic moments of non-thinking, I said something along the lines of ‘can we silence you?’
At that point everyone laughed and I turned bright red. Later, people said to me, ‘you said what everyone was thinking but was not going to say.’ I can thank my mum for this brutal honesty. Unfortunately, I don’t see it as such until it escapes and I cannot gather the words back up and put them back in my mouth.
A lot of the time, people are taken aback. It certainly gets you a reputation. Yet sometimes, people welcome this refreshing honesty. Years ago when I was working for a blindness agency we had a new staff member start. I don’t remember what I said to him on his first day. About a year later, he reminded me. He said, I’ll never forget one of the first things you said:
Blind people are like everyone else. Some are nice. Some are arseholes.
He reminded me and told me that he had found that to be true.
What sparked this moment of self-reflection on my flaws? Well I was reading a post by Todd Winther called ‘You want to win an oscar? Play a (real) cripple.‘ I had a strong reaction to it. His argument is that if you play a person with a disability, you’ll win an Oscar… or perhaps it’s that if you’re nominated for an Oscar and the character you played has a disability, you’ll win. Either way, I found myself annoyed. I felt that this argument belitted the performances given by the respective actors. After watching Geoffrey Rush in Shine, did I think to myself, yes he won an Oscar because David Helfgott had a nervous breakdown? It didn’t cross my mind. I thought it was just a bloody good performance.
On reflection, I probably say things which are equally cynical, or at the very least, repeat them – such as Andrew’s claim that The Gap (a Sydney suicide hot spot) is discriminating against people who are disabled as there is no ramp to ‘launch’ oneself from. Yet, I’d like to think the difference is when Andrew does it it’s funny (in a black humoured kind of way). Hmm… not that I’ve got all hot under the collar over nothing, perhaps it’s time to call it a night.
At least if I decide that I’ve had one of my moments of exceptional bluntness, there’s always a delete button on a blog; unlike what comes out of mouth!