Tuesday, November 29, 2011

Purchase an Outcome Not an Outfit

Thanks to John for his latest post on individualised funding... you can find his blog here: http://www.johnmckenna.com.au/ 

People with disabilities and their families are becoming “Smart Shoppers”

When it comes to embracing individualised funding I feel pretty comfortable saying Victorians are leading the way.

Yes it’s new and different and of course there is a degree of nervousness in the air.

The word on the street is, you need to know which door to knock on, and remind them that you are shopping for the best deal.

A message I leave with people who have attended the VALID Individual Support Packages ISP’s workshops is that there are no experts so it’s crucial to talk to many people as possible.

The Department of Human Services Victoria have really ramped up their efforts in training facilitators as these are the folks that we should be turning to for guidance.

Peer support can be a great source of information which I strongly recommend.

On the 24th of Oct. 2011  the Peer-Support-to-Buy-Support group had their first meeting that was well attended.

The hot topic of the night was, direct employment, what’s it like? how much time does it take up? when are they rolling it out?
Direct Employment of carers will be rolling out as an option for those interested in Victoria 2012.
The next Peer-Support-to Buy-Support meeting is scheduled for 6th of December; check out the site for more information.

There are many other interesting initiatives  being planned by a variety of organisations designed to help individuals and families source appropriate supports.

I’m currently in discussions with an iPhone/Android application developer about an easy-to-use tool that will help locate value for money disability supports.

The Find-A-Carer website that I featured earlier (which has recently been revamped) is another great example of online assistance that is currently available.

So as we shop & haggle on price for Christmas gifts, keep in mind, much of the same approach can be used when purchasing supports from a disability service provider.

Take Control Buy That Outcome

Tuesday, November 8, 2011

The Racist on the Train

Thanks to Carl for his latest post... oh the perils of public transport!
People on trains are often a source of entertainment, insight, disgust and intrigue; sometimes all at once. They also present opportunities; I landed one of my jobs from a chance meeting on a train. Yet at the same time, I was also mistaken for a woman by a 13-year-old homeless boy who wanted my wallet. Passengers on trains also enjoy dishing out backhanded compliments, especially to those with a disability. I wrote about one such encounter in this blog post, and recently I had another run in with a passenger, yet this time the situation was even more bizarre.
Encounters on trains almost always start innocently enough; I wait at the front carriage, make eye contact with the driver, and watch them slam the ramp down as they sigh simultaneously. Then, as any modern man does, I try to avoid people and find a secluded corner from which I can fiddle with my smart phone. I must be an affable chap, as strangers often strike up a conversation with me. It's normally old men though, so maybe I should be worried instead of self-satisfied? Regardless, an old gentleman started talking to me, you know the stuff, everyday pleasantries. It wasn't a conversation that glued me to my seat (bad disability joke), but it was pleasant enough. The man took out his wallet and showed me a picture of his daughter. I feigned a genuine smile, which he bought. Then the conversation began to peter out as my enthusiasm waned. Then there was a pause, a pause five minutes long. It was sadly broken by this unpleasant non sequitur;
“Too many Muslims these days, aren't there?!” Now that is definitely a question no one wants to be asked, especially by a stranger in the confines of a train carriage. If I was drunk, I probably would have sworn at him. If I was exhausted I probably would have nodded, just to end the conversation. Isn't it funny how your morals (or at least an outward expression of your morals) can easily be compromised depending on the state of mind and body? Anyway, I wasn't drunk, nor was I tired, so my response was a simple “Pardon?”
“Too many Muslims! You know, coming on the boats and taking our jobs.” He pointed to the article on the front page of the Herald Sun he was holding, as I let out a sigh and thought of this:

I asked, “Did they take your job?” He replied, “No, I don't work.” Becoming increasingly agitated, I queried, “Did they take your daughter's job?” Again, he replied, “No, she doesn't work. They still take our jobs though!”
I didn't have the energy to reply, so I glanced down at my phone and pretended to be busy. There was another pause, until the silence was again broken by another gem of a statement;
“They also rape and kill women!” By this point I was becoming really annoyed, yet at the same time I honestly couldn't be bothered dealing with people so out of touch with reality. Again, all I could reply with was an exhausted “Pardon?” Looking like I needed some convincing, he stood up, pointed to an article in his paper and exclaimed, “The Muslims! They'll kill all our women!”
“What makes you say that?” I replied, as the racist pointed to the article in the paper, “This one, this one killed his wife!” I tried to explain that it was horrible, yet it happened in Saudi Arabia, not Australia, and the man wasn't an asylum seeker. Further still, it was one man who committed the atrocity, not the entire population. Perhaps unsurprisingly, my attempts at logic failed to convince the racist, as he continued to spout incoherent diatribe.
You mightn't believe me, but the conversation turned stranger still. I was treated to a nonsensical lecture about childhood memories, pertaining to various topics, including slug guns, icy poles, and how everything was cheaper back in his day compared to now. Then there was a quick rant about how Caucasians have bigger brains than people from Africa, and that the Muslim women who wear full headdress use it as a convenient excuse to shoplift from milk bars and banks, all to avoid detection.
Again, I'm not making this up. In fact, I don't think my imagination stretches that far into the depths of madness.
Luckily for me, I arrived at my stop, and as the train driver once again slammed down the ramp to allow me a swift exit, the racist wished me goodbye, to which I replied, “You’re an idiot, have a good day.”

Wednesday, November 2, 2011

Close Your Mouth, Block Your Ears, Now Let’s Communicate……

Thanks to John for his latest post..... 

No longer should we  just watch wonder and guess.

There is now a AUSLAN training DVD that has the A to Z of signs and over 1,350 makaton signs (key word-sign and gesture)

AUSLAN is the sign language of the Australian deaf community.

The term AUSLAN is an acronym of “Australian sign language”, coined by Trevor Johnson in the early 
1980s, although the language itself is much older. (thanks for that Wikipedia)

On this training DVD each sign has a slow and normal speed so you can see how signs are formed, how they move whilst practising at the same time.

As my limbs are not AUSLAN friendly, I have not been able to embrace this language all that much, however have picked up a bit over the years, and think it’s a fantastic language.

Well done to Darren Roberts and the team at the Australian Auslan company, for producing this user-friendly training material, there are no more  excuses for those of us who think, “I don’t have time to attend classes”

I believe that all Australians need to make more of an effort to learn this unique language.
A presenter working with an AUSLAN interpreter

John's blog can be found here:


Friday, October 21, 2011

Going to Rehab with Alfred

Thanks to Leela for her latest post...

Recently, I’ve been going to pulmonary rehabilitation.

I’m getting fit and taking charge. I’m becoming an active, engaged sick lady; doing my bit for our staggering health system by comandeering my own wellness program and revitalising my… Er, vitals, I suppose.

But pulmonary rehabilitation is not as thrilling as it sounds. It takes place in a huge echoey gymnasium in a building next to the Royal Prince Alfred Hospital. People, most of them in advanced years, shuffle around, coughing with the pathos of consumptives in 19th Century novels.

Some of them slump in chairs and tell me sad tales of How They Ended Up in This Place. Some of them are on walking frames hooked up to oxygen, and are urged on by sporty-looking physiotherapists with stopwatches. The physiotherapists call out encouraging phrases such as, “Looking super Meryl!” or, “Just one more lap, Bernie!”

Even worse, is the fact that when I’m similarly hooked up to an oxygen hose and walking frame, the oldies seem to overtake me at astonishing speeds. They can really rip around that gymnasium when they want to.

But it’s not all bad. For example, on my first visit I watched in awe as a tiny little old lady with huge owl-like plastic glasses (the envy, I’m sure, of many a Sydney hipster) sat down at a weights machine and proceeded to lift incredibly large and heavy looking weights many times.

And the physiotherapists are actually pretty nice. And I have to admit that when I’m walking in endless circles, being overtaken by numerous old folks, and a physiotherapist yells something encouraging, it actually helps.

The physiotherapy itself is relatively easy; they don’t work you too hard in-case you get too tired and end up worse-off than when you started. But progress is slow. And it’s difficult to get there.
Because there is an odd lack of disabled parking near the hospital, I drive my car to a nearby bus stop and catch a bus that wends its way through Lewisham, Petersham, and Newtown before letting me off at Camperdown. For the first few times, I assumed it would be incredibly boring and took a book to read. I had, however, forgotten the endlessly fascinating soap-opera of inner-city public transport.

Old ladies with brittle mauve-coloured perms who sit straight-backed and vigilant, handbags perched on their knees like well-behaved lap-dogs, murmuring to each other about poor Ethel who finally went into the home last week.
The large woman who, breathing heavily, staggers in on crutches then heaves herself down across two seats and proceeds to tell anyone listening graphic and rather gory details about her latest knee surgery.

The woman with brown-stained teeth and rather a lot of plastic bags who keeps a stash of pressies for a little girl who embarks two stops later. Every week the little girl lets out a shrill scream at the sight of Santa Clause Lady and imperiously demands that she hand over the goods. Last week’s present was a long rectangular box of smokey grey and blue eye-shadow.
I do have to be careful. I can’t get too distracted pondering the age-appropriateness of eye-shadow for five-year olds, because it is vital to keep an eye out for my bus stop. Missing my stop means walking up several long hills and alternating between cursing myself for my stupidity and wishing the disability pension could stretch to a Sherpa Guide and donkey.

Finally, the bus pulls up outside the Royal Prince Alfred Hospital. I then walk fifty metres or so downhill to the building containing the physiotherapy department, which happens to be right next to the Alfred Hotel.

This Prince Alfred must have been a top bloke. Imagine that; being commemorated by a hospital and a pub. Here is a picture of old Alfie. Didn’t he have splendid whiskers?

Sometimes, making my slow ‘walk, walk, stop, catch-breath’ way up the steep disabled ramp outside the building, I imagine his Highness cheering me on with impeccible British aplomb, “You can do it old gel, by Jove!”
After rehab, perhaps he would shout me a celebratory schooner of lemonade at his pub and apologise for the lack of a disabled lift. “So sorry old gel. We hadn’t invented elevators when we built that place. ‘Twas a positively brill effort on your part, however.”

Tuesday, October 4, 2011

Thanks to John for sharing a couple of great information resources that can help you with some planning if you're in or visiting Victoria.

Stop looking,….. I found it
These are the words we can all start saying as we research the Internet for things ranging from a public drinking fountain to a large print keyboard at a public library.

The Arthritis Victoria  - Map for Health & Accessing the Community WEB SITE  is a great resource when trying to find an answer to that comon question
“How are you going to make this happen???”

The great thing about this site is that it incorporates a map so you know exactly where it is.
Equally important, is the telephone number of the service that you are looking for, so you can confirm the details are correct.

I want to give credit to many of the “behind the scenes” people who have supported this site such as the Human Services Directory Victoria

Also the National Health Services Directory is a shared initiative of all Australian Governments and things are happening right now  where we will start seeing this information at a national level.

So if you are serious about getting it right for yourself or others and as a health professional, invest some time in using this powerful online resource.

If you’re thinking you don’t have the time?….. that could be because you are not using tools such as this?

Picture of people looking at an on-line resource
Picture of people looking at an on-line resource
Visit John's blog here: http://www.johnmckenna.com.au/

Thursday, September 29, 2011

Thanks to Joanna on her latest post, talking about Kevin Rudd's recent gaffe on radio. So, who do we want as PM???

what a gaffe: Open letter to the cabinet

This happened on my mothers local radio station.

He’s a happy little vegemite, that’s at least a good sign for a foreign minister sprooking a “once Australian” production.

Not that anyone will ask my opinion on the matter but for what it’s worth I think that the only “reasonable solution” (the time has passed for a “good” solution) is to have a challenge. Do it openly, loudly even. Plan it, book it in. Just have it. Have anyone whose name has been mooted by the media make a “real” statement as to status.

Then you have two options, just two I figure.
1. Kevin wins,well  so that the electorate’s original wish is respected. He might lose the election but he can push it back a bit at least . Then when you lose you can play swapsy if you like. If he wins and keeps winning he needs to talk succession. But if he wins in the world outside the cabinet room, then in one sense, the cabinet needs to suck it up. The people have spoken. Democracy has then done its job.  If he’s that bad at internal consultation there’s always Dale Carnegie! But I doubt they will win again.

2. Someone else wins and everyone else shuts up and winner gets given three clean news cycles. Yes I know technically the media decides that. But the party PR machine needs to cheer loudly. Keep all the news coming from the Government, Party and Country coming from this mouth ONLY. I think there are too many egos for this to work. But it must, because the Party can’t afford a bi-election. Nor can the liberal-minded of us all migrate to New Zealand quickly enough!

Even people I know with little interest in politics are taking bets on Julia remaining PM. Lets deal with it.
Why one might ask is this still an issue. Why is Kevin Rudd still on the front page of the paper every time he coughs?

Despite the carbon tax Copenhagen/mining tax mess up, I think that the polls that resulted were only meant as a slap. A punishment, not an execution. We figured he’d get the message that he had upset us and he’d have the time to kiss us and make up. He was still charming to us. So we didn’t know that he was hard to work with. But that wasn’t our problem. The spill made it our problem because it happened quickly, but not cleanly. and neither the mining tax, nor the carbon tax have looked like clear and clean wins for Julia Gillard anyway.
You turned our slap into your execution, without asking us. Clearly we don’t like that type of responsibility. We are happy enough (or not) with the responsibilities we have, thank you very much.

So now we are nervous about why the choices we make mean. Some are learning what the rest of us knew; you elect a local member and the rest happens in green and red rooms elsewhere.

But, even to those of us who do intellectually understand that though, you do sell the leader you have as prime ministerial candidate versus “other guy”. It’s not “our prime-ministerial candidate” versus “other guy” versus “whoever else we might like later”. Not in the first term.

However and whoever might lament  the Americanisation of politics; it is done as I have just described. Both sides have used this method. It is how it is. Yes we all need civics class to learn more about what our election day choices really mean and all the green and red rooms involved, that will have to go into an education package later on.

In the meantime you have two choices. But first have the challenge. Then decide and make sure everyone gets the memo this time

Wednesday, September 28, 2011

Thanks to John for his latest post. There is a new group starting up that some of our Melbourne readers might be interested in, please see John's reference to this.

Thanks to all of you my weekly post now goes out to 202 people as of yesterday.
I normally like to mark the occasion with something different as I did when I hit the 100 mark, Simon and I developed the “Disability Maze” illustration which is still on my site and gets a lot of interest.
Anyway a big thank you for your support.
The Victorian Auditors General Office report on “Individualised Funding for Disability Services” was released on 14th September.
It has an interesting balance of positive evidence from people whose lives are really benefiting along with concerns that the Department of Human Services needs greater assurance that funds are being spent appropriately.
As someone who has been closely involved over the past seven years as a recipient of funding and an Advocate I know how valuable it is to learn from others as peers who are also navigating this new way of funding.
Introducing – Peer Support to Buy Support – Melbourne
Its opportunity for people and families to get together & talk about a range of disability funding challenges whilst sharing with each other the good and the bad experiences.

This group is not connected with any organisation is purely made up of people who are happy to meet up and thrash out, (nicely) topics such as
What’s important when I’m preparing to have my funding plan reviewed?
Go to the Peer Support To Buy Support Melbourne site that has been set up using a great on-line resource known as “Meet up” to get details about the first meeting scheduled for Monday, 24th October 2011 at 6 PM
It’s important that I clarify that this particular initiative is an idea that has been preventing me from having a good sleep for ages and not linked to my advocacy role with VALID.
Peer Support to Buy Support Get Together

Tuesday, September 13, 2011

Put Your Best Stick Forward

Today we welcome new guest blogger John Mckenna talking about some sticky business, he writes on his blog here: http://www.johnmckenna.com.au/

Check the height of that walking stick.

It frustrates me when I notice a great number of seniors using a stick that is too long for them.
It stands out a mile when you see a senior person using a stick and there elbow is almost at right angles.

Ideally when a person first gets a stick they are assessed by a health professional, however this often doesn’t happen.

A common scenario is that they are given a stick along with the advice from a well meaning friend “Here use of this, it will keep you from falling over and help you to stand up straight”
Yes of course a stick can be of great benefit, but only if it is the right height.

Things to consider when getting the right height for the person using the walking stick.

If purchasing a stick for the first time from a pharmacy, go for a stroll in the shop using their height adjustable stick.

Now you can determine if this stick is going to assist whilst also determining the correct height.
Once you have the height right then select your stick.

If just wanting to check the height of your existing stick try this as a guide.
Hold the stick with a handle on the ground beside you then stand to attention.
Using 2 cm above your wrist bone as a guide can give you a good indication of the correct height.
Your elbow should only be slightly bent.

 It’s also important to realise people use walking sticks for different reasons, so ultimately do seek advice from a health professional.

Getting your walking stick height right

Thursday, September 8, 2011

Cannula Crazies; Sydney bar delivers oxygen to suckers

Today we'd like to welcome Leela, a new guest blogger for us! She has a blog called The Heart-Lung Thing blog which you can check out here: 

I have always been pathetically self-conscious when it comes to using supplemental oxygen in public.

Pulmonary Hypertension patients are often prescribed the stuff to ward off the effects of long-term oxygen depletion. Some people take it just while sleeping, others (like me) also use it during the day if the weather is a bit humid or if they’ve ‘overdone it’ by walking up a few too many flights of stairs. Some people can’t breathe without it, and are on it 24/7.

Years ago, when the oxygen concentrator was first delivered to my uni student share-house, I had a difficult time accepting its presence in my life.

Its crimes were these:
When switched on it emitted ear-drum destroying beeps, then proceeded to rattle, pant, and heave like an asthmatic labrador. It also had the lovely brand name of ‘Invacare’. As I was in complete denial over my illness at this stage, I considered myself neither an invalid or in need of ‘care’, and thus failed to see how this machine could possibly be of any benefit to me.

Its beige, plastic, rectangular shape was weird and creepy. It sat in the corner of my room like an uninvited guest – a bland-faced hospital bureaucrat perhaps, who would obsessively tidy up the clutter on my desk, then insist on listening to a program on ABC Radio National about dahlia cultivation.

It came with yards of coiled rubber tubing, and had a metal attachment called a ‘nipple’. It also had a thing called a ‘nasal cannula’ that was supposed to go up my nose. Ick.
Most unforgivably, it didn’t even match my furniture. How was I supposed to encourage a creative yet home-like aesthetic with something that looked like a dalek camped out in my bedroom?

If I ever had to wear the nasal thing in public (say answering the door, or hanging laundry on the line), people tended to avoid looking me in the eye. This is because the most common sight of someone hooked up to oxygen is when they are an actor dying of cancer on a telemovie. Me wearing one turned me into Scary Cancer Lady.

It took me months, and a bout of airway restricting influenza, for me to start using it properly. Stupid, I know.

And, I recently found out, highly unnecessary. Because concentrated oxygen has suddenly become the very latest hip and decidedly cool thing to inhale.

An ‘oxygen bar’ has recently opened up in Sydney’s Harbourside Shopping Centre. Here, by the darkly glimmering waters of Darling Harbour,  you can hook your stylish self up to a stylish nasal cannula, and enjoy stylish 90 % oxygen for a dollar a minute.

The ‘bar’ which is in the middle of a shopping mall, is all neon glowing surfaces, touch screens, and shapely white stools, and is decorated with a back-lit blown-up photo of blue sky and green grass. Evocative, I presume, of health and vitality.

Basically, it’s pretty tacky. It looks like a cross between a food-court juice bar and a nail salon. And then of-course there is the array of colour-coded bubbling oxygen flavours that make it look like the Slurpie section of your local Seven Eleven.

While experts such as a respiratory specialist from the Australian Lung Foundation, and two scientists from the University of Technology, Sydney, say that oxygen for healthy people is not only pointless but dangerous, the bar owner insists upon its health benefits.

Taking 90 % oxygen (most air that we breathe is only at 21%) is, apparently, a great way to relax, and speeds flu recovery. And if you’re up all night popping pills and hitting the clubs, then it’s a terrific hangover cure so you’re all perky for the seven am boardroom meeting.

So for years, I have been self-consciously hiding my diseased, cannula-wearing, self in my bedroom, while being hooked up to oxygen was what the cool kids were doing all along.
Worse still, now I puff around town with blue lips, unable to afford the portable oxygen that these days I would wear no matter how self-conscious I’d feel, while the rich and stupid sit in shopping malls sucking down a substance which does nothing for them.

It’s a bit ironic if you think about it.

I suppose you could argue that the same irony exists in many other consumer items. Food that one doesn’t need, for example. Only this morning I bought a pink glazed donut and guzzled half of it while driving home from an appointment.

It was an entirely unnecessary act of crass consumerism. Someone out there in the teeming hungry world would do wonders on that hefty wad of saturated fat and strawberry-flavouring.
But can oxygen be classed as a ‘consumer item’? Should it be? Isn’t taking pure oxygen for a hangover cure the same as having a blood transfusion for a health kick while someone else bleeds out in an emergency room for lack of adequate blood supplies?

Isn’t using oxygen for ‘a bit of a boost’ trivialising the terribly serious world of Medicine and Illness? Or is it a good thing; does it normalise and bring oxygen use out into the open?
I’m not really sure.

The only thing I am sure of, is that I won’t be eating any more donuts – at least not in public. How embarrassingly uncool of me. The really hip trendy people only eat artisan-produced gluten free organic confectionery made locally or in Belgium. From now on, public consumption of donuts will only occur when they are available intravenously in bars.

Monday, August 8, 2011

Travellers Aid Allows Me to Work and Get Drunk

No accessible toilet at work?! Luckily for Carl and many others in Melbourne, there's a solution... 

Travellers Aid in the city of Melbourne is a unique organisation. They don't fall neatly into any existing charity structures, nor do they aim to run at a profit. So what exactly do they do? Lots.
I spoke about Travellers Aid briefly inthis post, but there is much more to be said about the organisation.
Travellers Aid operates out of two main locations, one at Southern Cross Station, and the other at Flinders Street Station. Both train stations are the largest in Melbourne, and thus they both have an enormously large and diverse make-up of people passing through.
Perhaps intuitively, Travellers Aid as an organisation attempts to cater to pretty much everyone. Whether it is tourists looking for simple directions, the elderly requiring assistance with transport, people escaping from abuse or domestic violence, and in my case particularly - those seeking personal care assistance.
I've written about personal care at ABC RampUp, and it is an issue that frustrates me to no end. So last year, when I found out that an organisation in the CBD of Melbourne provides public, free personal care without needing to book in advance, I was pretty impressed.
I found out that Travellers Aid provided free personal care due to some research I did when contemplating starting paid employment through an internship program at my university.
Unfortunately, I can't work wherever I want; location, space and funding are all major considerations of mine. In polite terms, I need personal care assistance and facilities at my potential workplace. In not so polite terms, I need a place to do a wee, and someone to give me a hand.
And how many workplaces have completely accessible facilities, including an electric hoist? And I'm not just talking about your standard accessible toilet, I'm talking about the full works. The answer is none, at least none that I could find. And yes, maybe I could rant and rave, complaining about discrimination and the like. But it was only for work experience, and if I make too much of a fuss then they might not hire me! Even if they do, they might just make me the guy who does the coffee runs.
I had an epiphany; enter Travellers Aid! I worked out that I could conceivably work anywhere centrally in the city of Melbourne, and make a trip to Travellers Aid whenever I needed to do the proverbial business.
In short, I went for the job and I got it! Hooray!
Was the personal care regime with Travellers Aid perfect? Definitely not, it took a good 15 minutes at full pace to reach the facilities from my work - through wind, the rain and the heat. There were also often queues, I hate queues.
But was it bad? Not in the slightest. The staff were great, all of them. Going to the toilet was really quite a quick and painless process, and that is just how it should be.
But let's think about this for a moment? I have said it already, but I physically could not work for more than a couple of hours without having a facility such as Travellers Aid nearby. If that was the case, and Travellers Aid didn't exist, it wouldn't have been worth applying for the job. As such, I now wouldn't have seven months work experience at a prestigious organisation under my belt. I wouldn't have some key references, I'd be a couple of thousand dollars poorer, and perhaps most importantly, I wouldn't have met many great people who have opened some pretty large doors for me.
What I am trying to say is this, without Travellers Aid I would have much less work experience, and much less life experience.
I've been talking about Travellers Aid in the context of work. But life isn't all work, and the city of Melbourne isn't all work. Travellers Aid often stays open quite late, and is thus also a social enabler in a context different to work.
Travellers Aid allows me to get very jolly and quite drunk in the city - all without worrying that my bladder will explode. I know they can't exactly use what I have just said on promotional materials, but it's definitely another great aspect of the organisation. It enables us disabled folk to leave the house and have a good time for once. Beware people; we are in your streets and in your towns, drinking your beer and eating your food!
Why am I telling you about Travellers Aid now? Well, I was asked to help them out with a couple of promotional activities, but as they say, that's a story for another time.

Friday, August 5, 2011

ode to a kitchen

Thanks to Joanna for her latest post :)

I didn’t realise that the apricot kitchen at my mother’s house in Orange meant so much to me until she told me last night by phone that she is having it renovated for the 1st time ever in what I think is nearly 20 years. It was largely built for teaching daughters who sit in wheelchairs how to cook I think. I don’t remember actually being taught much actual cooking. Like many homes, it was and probably will remain the heart of the home. It does need renovating; the laminates bench top in apricot looks dated, and with me out of the home the majority of the bench space is now too low for my mother. It probably always was, but she is starting to feel it.

I don’t get home much these days. Even when I am home I don’t cook much in that kitchen, circumstantial and not opportunity. However, I could cook there. Just knowing it was there made me feel better about all the kitchens before and since that haven’t worked. In the back of my mind, I knew there was a kitchen that worked. I knew it was possible to design a kitchen that worked without it looking too much like it belonged in a hospital, or in a rehab facility. To me anyway.

In watching all the Masterchef stuff on TV and reading cookbooks, I’ve learnt how to cook in kitchens that aren’t designed for me. I can make it work in this new kitchen and in whatever other future kitchen I work in. I can still be a foodie. I can still sit on cushions when I need to see into pots. But I am the only person I know who likes to cook who prefers electricity on their hotplates than gas. I put that down to my mother and her willingness to put any kitchen that I could use when I was at home and needed it and demonstrated inclusion. The world before and since did feel better to me knowing it was there.

I’ve been invited home before the renovations actually installed a couple of times to cook before the old one gets taken down. I plan to show Mum what she did for me. Being a foodie is not something you need to be able-bodied to enjoy, and with patient guests, you can cook in most places sitting down. I will enjoy that time in Orange. I will take lots of photos, so that I can show people the legendary kitchen and the fact it can be done. I will show Mum that her kitchen inspired me and cook up a storm to say thank you for the inclusion.

But it is time for the kitchen to be renovated. It is time. I just hope she puts in a powerpoint that I can reach.

Tuesday, July 26, 2011

Electric Wheelchair Etiquette - Carl Thompson

Although I've already touched on the subject in my post about being an electric wheelchair driving pedestrian, there is another aspect about electric wheelchair driving that warrants further discussion. I'm talking about all aspects of driving when accompanied with another person in an electric chair. This magnifies all the existing complications, whilst simultaneously introducing new ones.
Electric wheelchairs on foot paths sure scare people, there really is no doubt about it. They frighten girls, freak kids out and startle seniors.
In the busy streets of Melbourne pedestrians duck and weave, whilst others are lost in their own world and walk obliviously. When I'm driving by myself in my chair I am unencumbered, so I travel at quite a brisk pace to reach my destination. I'm not sure why this is, maybe because it's easy, sometimes it's fun, but it's most likely because I'm often late!
Without building myself up too much, I never collide with anyone, at least not when I'm sober. And I have to say, even when I have had a bit too much beer I can still drive pretty darn well. So with that said, perhaps the worst thing you can say to an electric wheelchair user is, “Don't run me over!” That's a big no-no! Even if you are joking and being flippant, saying that actually makes me want to run into you.
When you are in a wheelchair, or indeed a standard pedestrian, there are often stand-offs with other pedestrians on the footpath or in shops. You know the drill, someone is blocking your path and they move, but at the same time you copy them and shift in the same direction. There is an awkward look between all parties involved as you both move back into the same position, it is at that moment when everyone apologises profusely and a gap finally appears.
These stand-offs in an electric wheelchair are a lot more one-sided; I'm in the driver's seat (sorry) and the other party is almost always the one that apologises and moves out of the way, even if I don't want them to and I am in the wrong. I say almost, because there are a few situations where I believe I should definitely give way. I want you to rank the following and tell me who you think deserves to be given way on a footpath the most:

·         A young person in a manual wheelchair
·         A young person in an electric wheelchair
·         An attractive young woman or young man
·         An unattractive man or woman
·         A young woman or man with a pram
·         A blind person
·         An older person
·         An older person walking with a cane
·         An older person in a scooter
·         A blind, elderly albino woman in a manual wheelchair being pushed by her frail husband
Please tell me in the comments, you will, won’t you?
Anyway, with the previous paragraph withstanding, there are normally few issues regarding driving on a footpath in an electric wheelchair, even if it is extremely busy. Crossing roads is quite easy, and drivers often stop when they see you - sometimes even in the middle of roundabouts, I love some occasional positive discrimination! Of course there is the occasional annoyance, ramps up to the footpaths being in illogical places, and the ever enduring problem of steps at the front of shops. But I’ve covered these topics before, and I don't want to repeat myself.
I have recently discovered that driving with a fellow electric wheelchair multiplies some phenomena I already experience. I briefly mentioned that electric wheelchairs scare pedestrians. One electric wheelchair certainly scares pedestrians, but two? The result is blind panic! The looks on some people's faces when they see us... Many are physically startled and take a jump back, some even let out a loud “woah” as they move out of our vicinity in record speed. It is similar at every road, intersection and roundabout - when drivers cast their eyes on one wheelchair they consider stopping and often do, yet when they see two, or heaven forbid three, something takes over them and they slam on their brakes whilst simultaneously waving at us with a nervous grin.
New problems and considerations crop up when there are two electric wheelchairs on the footpath, as opposed to one. The speed at which you travel at is an obvious consideration, and this involves quickly weighing up the capabilities of the other persons electric wheelchair in comparison to your own. Can their chair handle rough ground? Are they as aggressive (perhaps uncaring?) as me with regards to swerving in and out of pedestrians? Do you travel single or double file? So many questions!
Traffic lights can also cause a problem; do you stay on the safe side and cross only when they are green? Or should I be a little naughty and quickly cross whilst they are still orange? I don't want to leave my compatriot behind or cause them any undue stress on account of my recklessness! If I go too fast I might stress out the other driver! And if I potter along at a slow pace they might think I'm being patronising!
Then there is the capability of the driver themselves; do they have perfect use of their arms? Perhaps they have a wheelchair controlled by a head-array type system and driving is slightly more difficult? Maybe they are plain ol’ left-handers (a quirky bunch).
Who opens the door to enter a shop or bar when there are two or more electric wheelchairs? The list continues, and I'm not even going to talk about trying to find space in a restaurant with two electric wheelchairs, let alone a concert or a club, that's a whole different story.
I think about strange things, that's a given. Yet I still think the social etiquette of an electric wheelchair driver is a tricky business.


Friday, July 15, 2011

Joanna Gaga?

Thanks to Joanna for her latest post:

No not me. Sydney. Lady Gaga came to town. She came, kids screamed. Otherwise serious “news magazine” tv hosts swooned. And GaGa (whose name is apparently Stefani Joanne) sat in a wheelchair during one of her performances.

The fact that it was in Sydney’s Town Hall is an irony that doesn’t escape me (for those that know me offline.
I am not fan. I had figured that I wouldn’t be. I had judged a book by it’s cover, and I’m ready to admit I was wrong. I assumed that given her fan base of tweeny boppers (“little monsters”) and those prepared to dress in obscure costume I would find the music too harsh, among other adjectives.

I didn’t see the nightclub or town hall performances. I didn’t see the wheelchair stunt as some are calling it. But I did see her tv interview here and her performance after the interview in the glass box. I have an admission. I liked it. Based on those two events I like her. The fact that she went on to roll out on stage doesn’t (having heard her speak) change my view.

She is remarkably level headed and passionate about inclusion. I understand from the Huffington Post piece that she has offended some of her fans and overseas disability groups, but less so here. Here as long as it was done consciously it has been received ok.

I was asked 5 times yesterday how I felt. That’s my answer. Like others I was more just jealous that she could get a chair that worked for her purposes so quickly especially after my recent experiences!

Wednesday, July 13, 2011

Carl is Back! Yay!

You Should Have Solid Tyres!

Well, I'm back! Totally rested and alive! The first semester of my marketing honours at university is finished, and now all I have to do is conduct some large-scale research and write a 20,000 word thesis. Yeah, fun times!

I really shouldn't complain though, university is voluntary - self-inflicted pain, if you like. There was however an incident that happened to me a few weeks ago that was entirely involuntary, something that caused much more than a slight inconvenience.

My brother Rory was staying over ‘looking after me’ as my parents were away. And when I say he was ‘looking after me’, all that usually involves is just ordering pizza, listening to music and drinking beer. In disability circles, when parents take a holiday it's called ‘respite’, though the connotations of that make me sound like an ogre or something. Regardless, our weekend was pretty relaxed - that was until we finally decided to brave the outdoors and actually do something.

It was a leisurely walk to the train station, picturesque even - with birds chirping away happily. Unfortunately, after arriving at the station Rory looked down and noticed a problem - a massive rivet had made its way into one of my tyres! There are situations in life where all the options apparent suck. Home was a 15 minute walk away, and in that time my tyre could have deflated completely before we would have crossed all the main roads, let alone before we arrived home. My parents were hours away, so calling them was out of the question. So what did we do? We jumped on the train and headed to the city.

I bet you are thinking it was a stupid decision, but there was method to our madness. A great organisation called Travellers Aid is situated at the heart of Flinders Street Station (there is one in Southern Cross as well), they offer a wide variety of services; including the rental of wheelchairs and scooters, charging facilities and even personal care. Our logic was to arrive at Travellers Aid and see if they could repair my tyre, or at least put us in contact with someone who could.

So we boarded the train and waited. A sinking feeling came over me, literally. My electric wheelchair started developing a pronounced lean to the right as my tyre quickly deflated. Rory started freaking out, repeatedly muttering “Aww shit...” under his breath whilst I giggled nervously. I didn't dare moving my chair, though I knew I would soon need to - it looked bad, really bad.

A fellow passenger on the train came over and informed us that we had a flat tyre situation on our hands. I suppose I should be more appreciative of their sentiment, but stating the obvious didn't help matters very much. Another passenger was even less helpful, “I thought wheelchairs have solid tyres!” she said, as she exited the train. Very funny! Thanks lady, thanks a lot.

As another wheelchair commuter entered our train carriage we asked the driver if he wouldn't mind helping us out when we arrived at our stop. He agreed, which was cool - he also asked me why I didn't have solid tyres, it wasn't funny anymore.

It was the moment of truth, we arrived at our stop and it was finally time to see if driving on the flat-as-a-pancake tyre was possible. The train driver was patient as we left the carriage, which was lucky because it certainly took a while. I'm not quite sure how to explain the feeling, and the noise. Every rotation of the tyre produced a sickening rubbery squeak, and as my top speed was cut so dramatically, the arduous journey to Travellers Aid took at least 15 minutes, when it would normally take just one. The journey wasn't made any faster by the train attendant with ill informed but good intentions.

To be honest, we didn't really need anyone to accompany us. We knew where Travellers Aid was because I had been there countless times. But people often like doing their good deed for the day, even if it is not really needed - so we let the attendant tag along. Bad move.

I swear it; the same comment spewed from his mouth almost every metre we travelled – “Wow! I thought wheelchairs would have solid tyres!” He was driving me insane! “Can't you get solid tyres for them? You should have had them fitted.” I had a finite amount of smiles left at this stage of the journey, and as we finally reached Travellers Aid and ‘thanked’ the attendant for annoying the absolute shit out of us, he left with these parting words – “Hopefully you get it repaired soon, but I recommend getting solid tyres!”

I didn't want to drive on the flat tyre for a second longer, for fear of damaging the wheel itself. As such, it was a welcome relief when we entered Travellers Aid. There was no stating the obvious, and the lack of snide remarks and queries regarding solid tyres was very refreshing. Unfortunately though, there wasn't really a solution to my pretty obvious problem either. They didn't have the tools to provide a full repair service, but they did have the option of wheelchair rental.

We decided to take a break from the ordeal and get some lunch. After all, it was why we headed to the city in the first place. I felt strange being in a manual wheelchair again after what must have been at least 10 years; it reminded me of the good old days. Especially because it was my older brother pushing me around, although in this instance he is no longer a kid and instead has a lustrous beard. What did carryover from childhood to adulthood however, was an aggressive streak in his wheelchair pushing.

It is no stretch to say I'm a bit of a control freak, so when my very mobility was taken away from me and put into the hands of a madman (Rory), things sure became stressful. The heart of Melbourne city is a pretty busy place, with frantic pedestrians darting around at obtuse angles whilst simultaneously chatting on their phones, taking photos in front of landmarks, or listening to their iPods. There were countless close shaves, a couple of clipped ankles and one or two dented shins. Every collision resulted in me receiving a dirty look, but all I could do was hold my hands up and plead innocence- after all, I wasn't in control.

Nevertheless, we arrived at one of our favourite cafes safely, and found a great position out the front near an outdoor heater. This isn't a food blog, thank God - there is no shortage of them on the Internet! What I will say however, is that I am a coffee connoisseur (wanker) and I enjoy quality food - the cafe we frequent passes with flying colours.

What didn''t pass however, was the comfort of my manual wheelchair seat. It makes sense though, because my scoliosis has made my back uniquely proportioned (buggered), it juts out like the hunchback of Notre Dame. With that said, I suppose it makes sense that I normally require a fitted seat to be comfortable. Still, regardless of the quality of the food and coffee, squirming around in a seat certainly detracted from the fine dining experience somewhat.

It was at this point when we decided to ring up an insurance company. The people at Travellers Aid told us that they may be able to offer wheelchair repair services. The phone call appeared to be promising at first, as they indeed had roadside assistance for wheelchairs and scooters. It was going to cost us money, but nothing in life ever comes for free, and that's certainly the case with disability related dramas.

It was organised, or so we thought. There was a problem though, the repair car would only meet us parallel to a road. You may be thinking that it sounds fair enough, and normally I would agree - but they were adamant that they could only repair my electric wheelchair on the roadside. No, we could not meet them at the car and show them to my electric wheelchair - that was far too logical for an insurance company. You never know, we could be a threat to them! Everyone knows that when grown men or women leave a car to repair a wheelchair it poses a serious threat to their health and safety! I'm not sure, you'd think those working for an insurance company would have a pretty decent insurance policy, but I digress...

Rory tried to reason with them, and tried to use logic. We asked; what if I was alone and my electric wheelchair had run out of batteries? How would I meet them at the roadside? I suppose I should have realised that logic and insurance companies are not often synonymous with each other. I thought it was pretty simple though; I didn't want to risk driving my chair on a flat tyre and damaging my metal wheel, whilst trying to find the repair people on a crowded street, people who are stupidly legally obliged to stay inside their warm and cosy car.

My electric wheelchair was at the largest train station in Melbourne and in an easily identifiable location. If they wanted our longitudel and latitude, or our GPS coordinates, we would have most likely been able to provide them. But no, they couldn't leave their car.


So what did we do? We cancelled the policy, and told them that it was rubbish. The whole phone conversation taught us a lesson though, the next time your wheelchair breaks down, make sure you have the foresight to ensure that it breaks down parallel to a road.

Our only option now was to wait for the parents to arrive, and bring with them a new tyre. Luckily they were headed back to Melbourne anyway, but they were still a few hours away - A few arduous hours sitting in an uncomfortable manual wheelchair.

Nothing very noteworthy happened, we cruised the streets aimlessly as night began to fall. We observed the weird and wonderful inhabitants of Melbourne; the homeless and the higher-ups, the teenagers and the tourists. It was getting desperate and cold – so beer was consumed to warm our weary hearts. Rory and I almost resorted to drinking in an alley, but we didn't feel quite that homeless - commonsense prevailed as our parents finally arrived two hours after the insurance debacle.

The story from here on is simple (and a bit boring), it literally took five minutes for my dad to replace my tyre. Better still, we didn't need to meet him at the car! Then we drove home. Exciting!

We kept the offending rivet for posterity, and my dad even scanned it for me. Here it is, in all its magnified glory:

So, that's about a wrap. All we wanted to do was head to the city, grab a coffee and maybe get some lunch. But as always, the most memorable times are those that are not planned.

But what if I was by myself when it all happened? What if I was nowhere near Travellers Aid? Then what would I do? Maybe I would decompose, leaving just a skeleton as the repair men in the insurance car would wait in comfort? Flat tyres don't happen very often, and for that I am thankful. But there really are no options in the case of emergency, so what could I do? 

Maybe I should get solid tyres?

Wednesday, June 8, 2011

five 2.0

Thanks to Joanna for this post!

Ok so a few days ago I promised that I’d give you my top five things I want to be different for people with disability in 5 years time. There are of course more than 5, but here’s my five.
  • I want the assumption that I (or anyone) needs a carer with them to stop. I may or may not have a carer, but it is amazing how may people especially from non-disability focused organisations (like airlines, it seems) assume that I must. If I don’t have a carer with me at the point where you see me, and you don’t know me, then lets assume for argument’s sake that I don’t have one or need one. In fact if I look like I know what I’m doing with a particular situation, lets treat me like I do. It’s quite hurtful as a grown woman who has lived with this level of difference my entire life, to have complete strangers look around me for someone, anyone that stands up so that they can breathe a sigh of relief, start talking over my head, and  tell me how lucky I am to have a friend like whoever the standing person is. I’m not taking anything away from those that have either formal or informal carer arrangements, but I don’t. I’m trying to get a best fit here in a world that i at best 90% there in some areas (but it’s often a crucial piece that is missing).
  • I want to really be a person, not a product/program or a problem. With the integration of some provision of accommodation of people with disability in the mainstream activities of life, I’ve noticed an increase in bad references. Variations on”There’s a wheelchair coming to 16″, said  to me is a twice or even three times daily reference. I know its shorthand and  know its said so you can ultimately help, but its rude to ignore the person in these references. My chair didn’t ask for help. I did. There may well be processes that need to be incorporated, but that’s not going to change if you add a personal descriptor into the mix. My wheelchair is not going to drive itself. While I’m here, would it hurt you to realise that I didn’t appear on your radar as a problem as much as a person trying to get on with it in a world that wasn’t built with weakness in mind? Smile.
  • Borrowing from Stella:
In five years time I want to be living in a world where disability doesn’t automatically mean disadvantage. I want to be living in a world where I don’t spend every spare cent of my salary, from a job I work hard at, on maintaining my participation in the world. I’d like to be able to entertain the possibility of being a home owner or going overseas, like my non-disabled peers.
These things are do-able but really a lot harder than they need to be.
  • I want it to really truly be illegal to build a building, or run a business that does not provide access to all of us, and I want that enforced legally and socially. I want it to get more than sympathetic/guilty glances when others can use a service like transport without thinking twice
  • I want to be a proud included member of any number of communities and cultures — not just based on lack.

There’s a start…. Thoughts?

Wednesday, May 25, 2011

Guest Post from Tori Martinez

What I Learned on My Vacation

It's been 17 months since my traumatic brain injury, and if there's been one constant in my life during that time it's been doctors. Each week, I see multiple doctors and therapists several times a week. Some weeks, I have two or more appointments in one day. Other weeks I have an appointment each day of the week. Sometimes it's both.

I've come to know my doctors, therapists and the medical staff in their offices very well, and have formed very good relationships with almost all of those I see regularly. They have become very much a part of my life and, without question, an integral part of my ongoing recovery process.

But - and there's always a BUT - seeing doctors on such a regular basis can also begin to wear on the mind, body and spirit. Even though I know I need them, it often feels like my life is consumed by medical appointments, insurance costs, confusing explanations of benefits, and the overwhelming sense that this is not what life should be all about.

A little over four weeks ago, as I was preparing to leave for a three-week vacation in Europe to visit with family and friends, I was in a very bad place emotionally. I felt overwhelmed with my conditions caused by the TBI and consumed with fear about the financial pressure all my treatments have put on us.

I had been on vacations before since my TBI, but this one was going to be an especially long one, and I was scared of many things. Would I feel miserable and ruin the trip? Would I run out of medications? Would I trip and fall in a foreign country? What would I do without my doctors, therapists and TBI friends and support groups?

Now that I've been home a week and have had time to reflect, I realize what a blessing the vacation was and how much it did to increase my confidence and sense of independence and liberation. It's not that I didn't have rough times, but I realized that I had the tools to deal with them, as well as the patience and support of my husband, family and friends.

Surprisingly, I took far less of the pain and anxiety medications than I thought I would need. My balance and coordination at good times was decent even on the roughest old cobblestone streets. At bad times, I managed by pacing myself and holding on to David. Even in big crowds I could tell that my anxiety levels were lower than they had been in the past. At times, I was enjoying myself so much I didn't even register anxiety or panic.

Most significantly, perhaps, was the realization a few days after we got back that I had managed just fine for three weeks without doctors and had more than taken for granted how wonderful it was to be free of any medical appointments! Granted, by the time I went to the neurologist, I was more than ready for my monthly nerve block injections for my pain, but even then I discovered that I needed fewer than in the past.

As my neurologist said when he demonstrated why I no longer need the nerve block injections in my forehead, but now only my neck, shoulders and back: "You've graduated to the next level."

Yes! I've graduated in many ways, I guess. And my vacation was a turning point for me. It helped me take a step back and see the transition more clearly and with a fresh perspective. I'm far from "cured," but I am improving, and that is a tremendous blessing made even more so by the recognition of it.

While I was away, I also saw one of my ambitions come to fruition: to publish a book. For years I have been writing historical non-fiction articles for magazines, web sites and blogs. Now I have a book! "An Unusual Journey Through Royal History" is the first of what I hope will be many books that I publish. Lord knows I'm not going to let my TBI get in the way of my hopes and dreams, not while I have an ounce of strength left in me!

To me, all of this says so much for what we as TBI survivors can achieve. I know so many TBI survivors who are doing wonderful things with their lives. Whether it's publishing a book, hosting a radio program, serving as an advocate, running across country, moderating an online support group, being a great parent... I could go on and on.

Sure, doctors have a lot to do with our recoveries, but doctors can't heal us without our cooperation or make us determined to move forward with our lives. They are like parents who do the best they can when we're in their care and leave the rest to us.

The bottom line is that those of us who have survived TBIs are survivors in endless ways. We are people who don't give up, and our immense challenges make us stronger, more resilient people. We just need to take a step back sometimes to recognize how far we've come in our individual journeys and see how much we've achieved.