DisCo: Disability Conversations

“Audio Description” Now Sounding At the Cinema

2012-01-16T15:49:00.000-08:00

Thanks to John for his latest post! You can find his blog here: www.johnmckenna.com.au

People who are blind or have low vision, are experiencing an increase in the rollout of Accessible Cinemas across Australia.

The word accessible naturally means many things to many people, so for people who are blind or have low vision…….

Hang on a sec, it’s my blog and it’s no secret that this group of people often call themselves Blinky’s
So …for Blinky’s accessibility means using audio description AD technology to enjoy the movies.
Audio description is the auditory narration of visual representations such as films and live performances.
During gaps in dialogue, it describes visual elements such as scenes, settings, actions and costumes.
The Accessible Cinema Advisory Group (ACAG) appear to be making good progress in improving accessibility for Blinky’s wishing to go to the movies.

ACAG is chaired by Jan McLucas the Parliamentary Secretary for Disabilities and Carers and they are also doing a lot of great stuff around captioning for people who are Deaf or hearing impaired.

To follow the progress of this rollout keep Accessible Cinema in Australia bookmarked.

Purchase an Outcome Not an Outfit

2011-11-28T15:25:00.000-08:00

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

The Racist on the Train

2011-11-07T17:05:00.000-08:00

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.”

http://www.workingatperfect.com/

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

2011-11-01T16:50:00.000-07:00

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.

John's blog can be found here:

http://www.johnmckenna.com.au/

Going to Rehab with Alfred

2011-10-20T20:25:00.000-07:00

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.

Impressive.

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.”

You can find the original post here: http://heartlungthing.wordpress.com/2011/10/20/going-to-rehab-with-alfred/

2011-10-03T18:41:00.000-07:00

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

Visit John's blog here: http://www.johnmckenna.com.au/

2011-09-28T17:15:00.000-07:00

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

2011-09-27T18:10:00.000-07:00

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.

Put Your Best Stick Forward

2011-09-12T20:02:00.000-07:00

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

Cannula Crazies; Sydney bar delivers oxygen to suckers

2011-09-07T16:08:00.000-07:00

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:

http://heartlungthing.wordpress.com/.

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.

Travellers Aid Allows Me to Work and Get Drunk

2011-08-07T16:54:00.000-07:00

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.

ode to a kitchen

2011-08-04T18:04:00.000-07:00

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.

Electric Wheelchair Etiquette - Carl Thompson

2011-07-25T15:35:00.000-07:00

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.

http://www.workingatperfect.com/

Joanna Gaga?

2011-07-14T23:23:00.000-07:00

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!

Carl is Back! Yay!

2011-07-12T21:39:00.000-07:00

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.

Bullshit.

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?

five 2.0

2011-06-07T16:52:00.000-07:00

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?

Guest Post from Tori Martinez

2011-05-24T17:35:00.000-07:00

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.

Because Every Australian Does Count

2011-05-08T16:22:00.000-07:00

Thanks to Joanna Nicol for her insight on the recent National Disability and Carers Congress and NDIS....her blog can be found here: http://willowdove.com/blog/

With apologies to my international readers this is about a very important political movement happening here in Australia to help people with disabilities cover the living costs of having a disability in an enabling way I would really appreciate it if you are happy to refer this post to any Australian that you know. Thanks. Joanna

Part of the reason that I was in Melbourne this week was to attend the National Disability and Carers Congress.

It was an interesting exercise in people watching, as well is a great deal more. Most of the people attending were service providers who, it has to be said were unsure what to do with me. I was one of about 25 people who use wheelchairs, and have made a business or, like me, represent a service that seeks to improve the lives of people with disabilities and their carers. This was among 1000.

The Disability and Carers Alliance is not something that I was aware of. I’m not sure how long it’s been around. But it struck me to some degree that the alliance, however old or long is a tenuous one established to get everybody on the same page and fighting towards the National Disability Insurance Scheme. This is something that although it smells a little bit like the latest silver bullet, in a similar way to the development of the now endorsed Disability (Access to Premises–Buildings) Standards, I think this might well have a very good and profound impact on the living standards of people with disabilities.

That is of course if like all things we can get the balance right. The balance between individual freedom and flexibility to choose and the unavoidable budgetary constraints, which means that it is unrealistic, unworkable and unfair to expect a blank cheque to be given out to every individual who has a disability.

The biggest thing that impressed me was the business case and the fact that the Productivity Commission could see the business case. Without compassion to human rights, social conscience, “well we’re really should because it’s the right thing to do” type arguments, these people who in one case had nothing to do with disability, could see the usefulness of including people with disabilities and increasing both their participation and comfort for a mere 12 ½ billion dollars.

That isn’t a lot of money really when you consider that the current cost most of 6 ½ billion doesn’t include the people with disabilities in the country get no government assistance with the costs of their mobility, communication and self-care needs and are being simultaneously vastly underutilised.

I was pleased that after the rallying cry, the first real order of business was, to examine the cold hard facts and actively for the time being avoid using the soft fluffy arguments, which aren’t always the most useful, although they are often the first to be drawn on.

I will no doubt have more to say about the Congress and the NDIS in coming days, and onward in the lead up to government response which is due by the end of the year after the Productivity Commission gives the government its report in July. the government then have until November to respond.

In the meantime, if you believe that people with disabilities have the right and responsibility to make a contribution, and then every Australian counts, could you please go to this website and with your three quick clicks say so?

For another argument ABC Ramp Up has a guest post from one of the conveners of the Congress.

This is the first time since the International Year Of Disabled People in 1981, that I have seen such an opportunity to get the community of people with disabilities in whatever form and our friends families and supporters politically and socially mobilised to make a difference. Whatever happens at the end of the year, that much I am proud of.

Guest Post from Carl Thompson

2011-05-04T17:07:00.000-07:00

Carl talks about jeans, super star signers and 'mocktails' at the NDCC...... oh and if you squint at the pic below, i'm pretty sure you can see a dude wearing jeans... he's standing behind the guy in the black suit facing us....

Being an Adult at The National Disability and Carer Congress

Being an adult is something new for me, but I had my first real attempt at adulthood during the National Disability and Carer Congress yesterday. As it was my virgin experience attending an adult conference I was excited for potential highbrow mingling, cocktails, and of course the discussion itself. Many aspects of my first conference lived up to my expectations, and one or two things didn't.

The speakers were great, I won't lie. And I'm including the politicians when I say the speeches were exciting, something not normally said in today's tightly scripted political climate. The standout speeches though were made by those directly involved with the issue of disability and their carers. It was obvious that these speakers had lived experience to draw upon, and this was palpable in every word spoken.

But as mentioned, even the politicians inspired confidence in me that real reform in the disability sector may occur. Still, as many fellow people with a disability would attest to, politicians have often pledged support but failed to deliver. Yet in this case we have what they promised on camera.

I am not going to talk further about the content of the congress in this blog entry, no doubt it will be covered thoroughly at ABC Ramp Up, and hopefully the general media. Instead I'm going to discuss the many strange things that piqued my interest. I'm sure if you have read my blog before you'd understand that I am not really normal, so you wouldn't be surprised that I notice some strange phenomena and made some odd observations. The conference was no exception.

Firstly, it was a bad move for me to wear jeans. Now I'm not one for fashion, but being at a height level with many people's legs I noticed what was worn by the vast majority of those attending the congress. No one was wearing jeans, except for me. Major fashion and decorum suicide there on my part.

Secondly, interpreters proficient at sign language are definitely the most amazing people in the entire world. I'm ashamed to say I tuned out when listening to some of the inspiring speeches and instead gazed at the awe-inspiring interpreters with a permanent smile on my face, marvelling at their manual dexterity and drama skills. Seriously, one lady deserves a starring role in a blockbuster film, and a job as a professional juggler - preferably both at once.

Thirdly, I have never seen so many wheelchairs in the one place in my entire life! Neither had the majority of staff I would hazard a guess. Thankfully, and contrary to many electric wheelchair driving stereotypes, there were no major collisions that I could detect, and it was actually relatively easy getting around Etihad Stadium.

Finally, unfortunately I came to understand that the cocktail party at this function did not actually involve cocktails. We were instead served rubbish beer and house wine in their place. You can't make cocktails without spirits or liqueurs, fact.

But with that said, the cocktail party was definitely the most productive part of my first adult conference. Beer and wine are social lubricants that encourage people to chat and mingle, often with complete strangers. After a couple of wines people must have forgot I was wearing jeans and they began chatting to me. It was great meeting new people and forming new connections.

Even better than the stirring speeches and amazing interpreters was the face-to-face human interaction with other people passionate about the issue of disability rights and reform in Australia. This aspect was definitely the highlight of the National Disability and Carer Congress for me, and I can safely say for many others.

On the whole it was a good experience being an adult, I just have to remember not to wear jeans next time.

When Your Electric Wheelchair Stops, So Do You

2011-04-26T21:03:00.000-07:00

Guest blogger Carl Thompson talks about his trusty steed packing it in...eek!.....

All three of my electric wheelchairs have been extremely reliable over the years. I've really been lucky in this regard, I'm not sure whether it's because I treat them well or if it's due to my parents and I choosing quality models. Regardless, I feel confident that my chair will get me to where I want to go without any major dramas.

Still, my current electric wheelchair is very old. Seven years old in fact. I'm due for a new one, and as the old sayings and superstitions predict, as soon as I ordered a replacement, my current chair was mightily offended and reacted by turning strange. They have a life of their own sometimes.

When your electric wheelchair stops working there is really not much you can do. It's frightening, I really mean it. I wouldn't be able to go outside for one. And it would be impossible for me to even get to my computer. All I would be able to do is sit on my couch, and watching daytime TV is not my idea of fun. When an electric wheelchair breaks down, your life breaks down. As melodramatic as that sounds it's pretty accurate.

Last week my chair wasn't turning on. Can you imagine the inconvenience? I had a full day of university planned. I tried turning the chair off then on again and nothing happened. I waited five minutes and tried again, no luck for me. We unplugged and wiggled the cords connecting the electronics to the battery. Success! Disaster averted, or so I thought.

I entered my car, turned my wheelchair off and relaxed for the drive. Can you guess what happened next? That's right, when I wanted to exit the car my chair wasn't turning on again - so frustrating. We wiggled the cords, tried turning the chair on again. No luck, so we rinse and repeat. Not very fun and I'm already running late for my lecture. Eventually it worked, but doubt still remained. It was extremely unnerving for the rest of the day, sometimes the chair worked, other times it stopped and I was stranded for five minutes or so, frantically wiggling cords.

I finally made my way back home, and luckily when my dad had a proper look at my electric wheelchair he found a loose cord in a hidden location. All is well that ends well I suppose.

Whilst a massive inconvenience, what I spoke about above was definitely not my most scary experience regarding electric wheelchair failure.

I remember in year seven when I was about 12 or 13 years old, I had an extremely active day. I must have been racing about everywhere as my electric wheelchair battery was pretty low by the end of the day. This was in the good old days when nobody my age had a mobile phone. And yes, I used to walk (drive) home in those days. Can you guess where I'm going with this?

My electric wheelchair battery meter was logarithmic. I didn't know what that meant back then, but I found out soon enough. It meant that for every bar of battery lost, losing a subsequent bar became easier and faster than the last. I was on about four out of a possible six battery bars by the time school had finished. Surely enough battery for me to be able to get home?

I set off on my walk home - everything was going okay, the chair was certainly going slower than normal, but at least it was going. When I reached the hill however, things started to go sour. My chair went down to a snail's pace and I started to panic.

The route I took when walking home was through a quiet park where there was never really anyone around. I couldn't yell out for help.

The lights on my chair started flashing, and then it ground to a halt and stopped completely. I didn't know what to do so I turned the chair off and on again. There was some slight rejuvenation and the chair started moving again. 20 m later it stopped again, and the process repeated itself. It was a torturous time, but the worst was yet to come.

I reached the road, it was not far at all from my house and the only one I needed to cross. By now however, the chair could only manage about 5 m before it stopped. This was where I really became worried. Granted, it was a quiet road. But when your electric wheelchair stops dead in the centre near a blind spot it is a cause for concern. Stranded in the middle of the road, I frantically turned my chair off and on. Luckily it worked, and my electric wheelchair crawled another few steps closer to the curb. It was still on the road when it stopped for a second time, more panic, and again I turned the chair off and on. At a snail's pace I arrived safely having crossed the road!

Another five minutes of crawling to my house in what would have taken 30 seconds under normal circumstances, I arrived home.

My parents wanted to know why I was late, I had a pretty good excuse.

Welcome to a new guest - Tori Martinez

2011-04-20T15:44:00.000-07:00

Today's guest Tori Martinez writes a blog called Fractured: Life with a Head Injury and tells her experience of living with an acquired brain injury after a fall at home.....if you'd like to check out Tori's blog you can find it here: http://fractured-myheadinjuryjournal.blogspot.com/

My Two Birthdays

When I started writing this blog last December, just before the one year anniversary of my traumatic brain injury, I knew no other TBI survivors. That all changed with my first blog post when I suddenly connected to hundreds of people like myself.

Since then, the world has opened up to me with a wonderful group of people who support and love me, even though they've never met me.

Through them, I've learned that I have two birthdays. The day I was born, and the day I survived my TBI. As my actual birthday nears, I can't help but think more about my TBI birthday - December 23, 2009 - and how important that day is to remember.

I didn't recognize my first TBI birthday, partly because it was too upsetting and partly because I didn't have the perspective on it my new friends have given me. But now that I approach my 37th birthday on March 30th, I realize that I might not be here today had I not survived my TBI on that day in December when I was still just 35.

One of the few memories I have immediately following my fall was when the paramedics were in our home. I'm told there were seven or eight of them. I don't remember their faces from that day, but I did hear some of their voices. One was asking me questions. Another, somewhere else in the room, was talking to someone on a walkie-talkie, and I remember hearing him say something like "35-year-old female... head trauma..."

Hearing those words scared me and I suddenly thought I was going to die. I kept thinking of Natasha Richardson. I remember saying to the paramedic tending to me, "I'm only 35. I don't want to die like Natasha Richardson."

Those of you who read my blog regularly or talk to me have heard me relate this story before, but it's a significant memory to me, as I was suddenly faced with my own mortality at a young age. I really didn't want to die.

Sadly, there were times not long after my TBI that I DID want to die because the pain was so intense and I felt so miserable, emotionally, mentally and physically. But with the passage of time, I cherish my life - even on the really bad days - and am so grateful to be here to celebrate another year of life.

My TBI has changed my life - in both good and bad ways. There's no doubt about that. It's so hard to say this without sounding cliché, but I think the struggles have made me appreciate what I do have, and I believe I have more meaningful purpose and direction in life now than before my TBI.

None of us ever knows when it's our time to go, but I do know that December 23, 2009 was not my time. So on March 30th, I'll be celebrating both my birthdays - my first and my second.

Guest Post: Carl Thompson

2011-03-31T15:51:00.000-07:00

A Photographer Not Without Vision

Here is an interview I wrote about a legally blind photographer that was published in a slightly altered form at DiVine here. Below is my original.

Andrew Follows is a photographer with a difference. He is legally blind due to a degenerative eye condition called Retinitis Pigmentosa (RP). Andrew currently however still has minimal sight in his right eye. Although Andrew has less than ideal vision, photography has always been one of his interests. Andrew’s eyesight worsened dramatically four years ago. Instead of abandoning photography completely, Andrew's interest grew into a passion as a result. Photography is now a big part of Andrew's life and career. I had a chance to talk to Andrew and ask him a few questions about photography and his life.

Andrew is not dwelling on the fact that he has a degenerative condition. Instead he tells me he is “...taking as many photographs as (he) can before (his) vision is gone.” Having no sight at all may make it difficult for Andrew to appreciate his own photography. But even after Andrew loses all his sight he will “...still continue to take photos when my vision is gone completely.” Andrew finds that “It’s a challenge, and it also challenges others.”

Challenging others is what Andrew does best. He takes great joy in experiencing the reactions of people when they view his photographs. “People see my photography first, and once they know it was from a blind person they understand the wow factor in my images.”

Andrew uses quality cameras and lenses for his photographs, giving his photography a professional look and feel. Andrew told me of his computer program that allows him to analyse his photography. “Through using my computer I can see my images in detail. I look at what I have created in the form of colours, and observe all the wonders that sighed people see but take no real notice of what they are looking at.” Proving that sometimes you do not need perfect vision in order to see clearly.

Friends sometimes give Andrew insights into his photographs. “Every now and then, someone will point out something I’ve missed that is in a photo that I have taken. Such as a photo I thought was just of a boat, but sitting on the end of the boat was actually a tiny sea bird which I had not seen. This has given me much joy.”

The confidence Andrew has when venturing out and taking photographs can be attributed in part to his guide dog Eamon. Andrew has advice for those reluctant to follow their dreams – “If you have a passion for something you enjoy, then all I can say is to run with it. Take all the help you can get to enhance your passion. If you enjoy what you are doing you will be surprised at how many doors open up for you.”

“My photography has opened up my world to the visual arts scene where I have met some amazing people. These people are listening to what I am saying and are enjoying what I am producing.” Because of this, Andrew is trying to raise money in order to present a photographic exhibition in London. He also wishes to conduct learning workshops for other vision impaired and sighted photographers. Andrew is hoping to tap into the English network of vision impaired photographers to develop his craft and share some of his experiences. He wants to further the recognition and knowledge of talented vision impaired photographers.

Guest Post: Carl Thompson

2011-03-22T17:04:00.000-07:00

Thanks to Carl for his continuing insights on everyday happenings....

Bouncers Can Be Friendly, Or Extremely Stupid

Most people my age hate bouncers and security guards. Reasons being they supposedly often enjoy spoiling a good night out, or are quite lecherous when there is a pretty lady nearby. From a disability perspective however, bouncers often transform themselves from a cold and indifferent human fun preventing barrier, to an overly protective and overzealous bodyguard of the cripple in a wheelchair.

The reason why I am writing this post is because yesterday I had an amusing bouncer experience. I was convinced by my friend Andrew to travel to the gambling area of a traditional pub post meal. It's not normally my scene, because I like spending my money rather than giving away. Excuse me, what was I saying again?

Oh yes, the bouncer. When we arrived in the pokies area Andrew was asked for his ID. Upon presentation of his ID, the bouncer did not address me, but addressed Andrew instead whilst pointing at me and said “He’s over 18 right? I suppose you wouldn't be volunteering and looking after him if he wasn't.” The bouncer then walked away. If anyone was volunteering in this situation it was me, because Andrew was spending my money on those stupid skill games that occasionally cough up lame prizes for copious amounts of cash. In this case, the bouncer was most definitely an idiot.

On another occasion I once had a bouncer who ordered my friends and I to travel up and down the same step on four separate occasions in the one night, without realising that it is extremely dangerous to try to lift my to 200kg electric wheelchair up a step, no matter how small it is. By the fourth time I asked him to help, and when we finally reached the top of the step I ‘accidentally’ gave his shins a (more than) slight nudge.

I find it quite amusing, contrary to my two experiences above, in most cases they love me! I can remember when I once entered the front door of a concert venue and a bouncer spotted me, he put his hands up signalling me to stop. It was frightening! Luckily for me, he wasn't about to throw me out, he was acting as my own personal chaperone and clearing a path through the inebriated crowd!

In theory, this is a good thing. It definitely made it easy to get a good position at the venue. But if you think about it more, it is preferential treatment. I really don't want preferential treatment, just as I don't want to be treated in a traditionally negative discriminatory way.

Whilst I say that I don't want any discrimination, even if that discrimination is positive, I have to admit that I am not being entirely truthful. I certainly appreciated the bouncer who helped my friends and I into the Big Day Out by circumventing the line that would have taken an hour to reach the front of. That is certainly okay by me!

My favourite bouncer definitely has to be my Caribbean friend. Every day when I was working in the city I drove my wheelchair past this six-foot six mammoth of a man. He was a friendly chap, and we had some strange conversations. I once asked him if he was ever bored just sitting there for eight hours a day ushering people into his place of work. His response amused me, (cue West Indian accent) “No bro, I am a positive thinker, standing here is an opportunity, an opportunity to talk to so many pretty ladies, and bro, believe me, My oh my! There sure is some mighty fine ladies ‘round these parts!”

Ross Gittins and the NDIS

2011-03-10T13:46:00.000-08:00

The proposed National Disability Insurance Scheme is a hot topic in Australia at the moment, and a lot of people are weighing in. Today's post was written by Joanna Nicol, who writes at the blog The View From Down Here. Thanks Joanna!

Joanna Nicol

The Productivity Commission recently released its draft report on Disability Care and Support. I haven't read it yet. It's on the list, along with half a dozen other books, several readings for university and a partridge in a pear tree. It's bad anyway, it is on the list.

The Australian journalist for the Sydney Morning Herald Ross Gittins has quite rightly beaten me to it. And he likes it. This is encouraging especially given that he speaks from an economic viewpoint. The business case for more individualised funding and says some sort of no fault payment to enable participation in the case that I have been arguing needed to be put together. The Productivity Commission has done just that.

The statistics that Gittins quotes are accurate if not conservative;

"It's estimated that about 680,000 people under 65 suffer a severe or profound limitation in their ability to engage in core human activities. Just under half of these have at least a daily need for help with mobility, self-care or communicating with others. But only about 170,000 are using disability services."

The definitions of “severe" and “profound" might well need some clarification. As I said, these numbers may well be conservative. However, it is a place to start if nothing else.

Much like my earlier piece looking at quotas in Egypt, I appreciate the fact that the discussion seems to be around enabling meaningful participation. News coverage on television and radio on the Insurence scheme here have profiled wheelchair users in the workforce and are using whatever little funding of money they have to pay for the care they need to work and pay their taxes (unclear sentence). The ordinary people argument.

Gittins and others are right. It's not a topic that we want to talk about or even think about. It's scary to think about bad things happening to good people, especially those we love. Politically it is difficult to score points opposing it as well, so you don't tend to get traction in the media unless you’re the Business Council perhaps. Especially given that the topic of disability is just a little too uncomfortable to be a warm fluffy human interest story.

But Australia needs to start having discussions about bigger issues that may not get solved in a week, a year or even an election cycle. Perhaps some will take a generation but this can be the start. Embracing humanity and the “fair go" principle for which we are (or were) known worldwide.

I do think there are some issues with the content of the report. For example I get nervous about another assessment and which box I might or might not fit into. However seeing disability as a productivity issue for the entire country and not an individualised problem deserving of sympathy only is a big step in the right direction. The locus of responsibility on all of us to contribute (and let each other do so) is reassuring and the tone of the discussions by those over whom this is not usually a core issue is comforting.

I am starting to feel like my country actually wants my contribution and is prepared to enable me to participate. Nice.

Left Out In The Cold

2011-03-09T13:53:00.000-08:00

(The content of today's post was emailed to me by Emma Crees, who has guest blogged on DisCo in the past. It's interesting and inspiring to see what strong activism is coming out of the proposed welfare reforms in the United Kingdom.)

On the eve of the second reading of the UK government’s controversial Welfare Reform Bill, on 9 March, disabled activist Kaliya Franklin stripped off to demonstrate what the result would be for disabled people across the UK if disability benefits are slashed to the bare minimum.

The photo shoot depicts a naked Franklin lying on the sand on a wintry beach, next to her empty wheelchair.

“I was absolutely frozen when I took my clothes off for the photo shoot,” says Franklin, “but it was nothing like as cold I and other disabled people will be if the government removes our essential benefits.”

The Left Out In The Cold awareness-raising campaign is being organised by disability rights group The Broken of Britain, of which Franklin is a founder and director.

Says Franklin, “It’s vital that every able-bodied person remembers they are just an accident or illness away from being disabled themselves. Many people think if they do become disabled that the state will look after them.

“But the fact is that even under current provisions, disability benefits are not enough for disabled people to live on. If the Welfare Reform Bill is passed, the situation will become unimaginably worse.”

In January, Franklin released a video on YouTube that explained how able-bodied people would be in for a major shock if they found themselves needing to apply for disability benefits. The video can be seen at http://www.youtube.com/watch?v=q7EXSpmrVMU.

The Broken of Britain group has been campaigning since summer 2010 to raise awareness of the government’s wider anti-disability policies. The group has consistently drawn attention to disabled people being the target of unjust government rhetoric and sham consultations, tabloid slander and political myths.

It says: “We are now the targets of deep and damaging cuts to disability services that are contained in and symbolised by the Welfare Reform Bill. The Bill disguises cuts and changes to a number of benefits, from housing benefit to Income Support that will punish disabled people.”

Sit Awhile In My Shoes

2011-03-02T14:26:00.000-08:00

Today's guest post from Rich Fabend takes an interesting look at how we understand disability.

Rich Fabend

I had just finished speaking to a class of elementary students and was leaving the school when a young child came up to me and said “It must be really cool being in that chair”. I was at a wedding reception once when a middle age woman said she thought the chair was pretty neat. She obviously had had too much to drink so I ignored her remark. I know an institution of higher learning that has students spend a day in a manual chair in order to get some sense of what it is like to be so confined. An organization I belonged to had a fundraising dinner to get money to purchase handcycles. When I arrived children and adults were riding handcycles in the street laughing and fooling around. When they hit the curb they just stood up and moved the bike. I went berserk. I dropped off the board of directors the next day. A psychiatrist I was seeing after my accident said to me once he wished he could trade places with me for a month. He believed he could gain an understanding of what it is like to be in a wheelchair. I know many people feel awkward around individuals with disabilities, but come-on, except for the elementary student, what were the others thinking? If you know your time in the chair is limited there is no way you can understand what it is like. How can an able-bodied person ever understand what it is really like to be disabled?

Living with a disability is not cool, nor is it a game that can played at. It can’t be understood by spending a few hours or a few days in a wheelchair. You must live it to truly understand it. How do I explain to someone the overpowering feeling I get to move my legs? How do I convey the “impulse- like” electrical charges running down my legs telling me they want to move? I had my son cross my legs once when this was going on but it made no difference. How do you explain this to anyone when you are not supposed to have any feeling below your arms; or that I feel so cold most of the time that I wear a knit hat in my house? I can’t even explain that to myself. One of the worst times I experienced was one night, (that’s when my bogymen come out) when the bed motor that raises my torso was not working. I woke up early one morning and had to lie in bed for 5 hours waiting for morning not being able to move or access the things on my hospital table. I just about went crazy. We live in a different world that no one can fathom unless they live there too. Maybe I’m being too harsh, but this is my perception.

Disability Participation Can Be Boring

2011-02-23T13:44:00.000-08:00

Today we have another guest post from Carl Thompson who writes the blog Working at Perfect. I first got chatting with Carl after he commented on the Weddings and Wheelchairs blog post, agreeing that it's great to see images of people with disability doing "normal" things. This post has kept me thinking on that point... Enjoy!

Carl Thompson

This post is about the concept of participation, and I am writing it for February's Disability Blog Carnival, held on the 25th. In its simplest form, participation means undertaking activities, often with others. This isn't an English lesson though, so instead I want to talk about what participation means for me in the context of my disability.

This is an extremely important topic for people with disabilities, as all too often doctors, physiotherapists, occupational therapists and the media focus far more attention on what we can't participate in or do, as opposed to what we can. On the rare occasions where people with disabilities are portrayed in the media, it is almost always an inspirational story telling of someone rising to the insurmountable challenges they face, or overcoming great adversity - you know the stuff, the brave disabled doctor with six PhD’s, or the mountain climber with no arms who has scaled Everest solo.

So this is going to be a bit of a letdown, but what I participate in is pretty boring. Maybe boring is not quite the correct term, but definitely nothing out of the ordinary. I go to work, come home and sit at the computer for far too long. I also eat and drink, occasionally in places outside my own home! I have friends, they visit me and I visit them. We talk about movies and TV shows. Get drunk, play games and drink coffee.

Are you bored yet? I know I am, but I'm trying to prove a point. People with disabilities can be amazing, and can participate in activities which most people would think were impossible. But these utterly interesting people, like everyone else in the world, are the exception and not the rule.

Unfortunately, in addition to the pedestal that disabled people are often placed upon with regards to achieving amazing things, the opposite is also true. For instance, many people are amazed that I have a bachelor degree from University. Others are also genuinely impressed that I go to work, and shock horror, that I actually get paid for it! This is a revelation to these people, as they finally realise that I'm not a token disabled volunteer, and that I actually like money and higher education.

Why do people think this about disabled people? Is it really that amazing? What about the tens of thousands of able-bodied people who earn their degrees every year? Or the millions of Australians who work every day? What I'm saying is that many people mistakenly perceive my participation in everyday activities to be something out of the ordinary, when really, there isn't all that much people my age participate in other than going to university, drinking beer and starting work.

I'm not an inspiration - I'm not a prodigy, a miracle, or a Paralympian. I'm just a dude who rants on the Internet who happens to be disabled.

Benedict Cutler Clothing Solutions

2011-02-16T13:24:00.000-08:00

Today I'm able to post a really interesting story about two Australian entrepreneurs Ben Cutler and Zane Conroy, and their new business Benedict Cutler Clothing Solutions. It's great to see people observe a problem, in this case a lack of appropriate business and formal clothing for people who use wheelchairs, and find a creative solution that will benefit many people.

Zane Conroy and Ben Cutler

When Zane Conroy acquired a spinal cord injury in January 2010 leaving him with quadriplegia he set himself a goal, to return to work by September that year and get on with life. Just before he left the Royal Rehabilitation Centre in Ryde he met Ben Cutler who was to be one of his support workers helping him with this goal and day to day activities.

In September when it came time for Zane to return to his office job in Sydney’s CBD he was disappointed to find that the suit he once wore with pride to his job and on formal occasions did not fit in all the wrong places and he was left feeling distressed. “I honestly felt very uncomfortable and even claustrophobic, no matter how I directed my carer to move or adjust the suit, it was choking and too loose at the same time. Not something I could see myself going to work in every day” said Zane.

“I had met Zane only recently but quickly realized he was about as strong willed as they come and so the look of disappointment on his face when his clothes were all frumpy and ill fitting moved me to make some enquires” explained Ben.

Having looked extensively online at available options Ben quickly got in contact with his Uncle John of J.H Cutler bespoke Tailors to see what they could do to help. “Uncle John had fitted some clients who used wheelchairs before and was happy to help alter Zane’s suit so that it looked and fitted as one should”. The alterations were a great success and even incorporated hidden zippers for easy access to personal care equipment, but most importantly they fit well whilst not restricting movement and avoiding pressure areas. After some more enquires into other clothing options, or lack of, Ben has decided, with Zane and in consultation with J. H. Cutler bespoke, to put together a clothing line consisting of not only formal wear but also casual trousers, jeans and jackets.

Launching in April, Benedict Cutler Clothing Solutions will be offering both a personalised and online service to restore clothing and fashion options to those who happen to use wheelchairs and feel that this should not inhibit ones ability to look and feel good in what they wear both to work and in social situations. You can find out more by visiting www.benedictcutler.com.au .

I want to know what love is? I want you to show me...

2011-02-13T14:30:00.000-08:00

Today is Valentine's Day, and Rich Fabend has written a very timely guest post about lasting love (not just chocolates and flowers!) For those who think the title of this post sounds familiar, they're from a song by Foreiger. Enjoy!

Rich Fabend

Since Valentine’s Day is Monday I will give you an example of what love is because I can’t show you. My wife Marge and I have been married 45 years. At my son’s wedding I was asked to give a brief talk. The following quote was part of what I said: “The last 29 years have been the best of my life. Marge and I have shared laughter and tears, good times and bad, joys and sorrows; but more then that, we have shared our dreams, our inner most thoughts, our strengths, our frailties, and we have shared our love. Marge has always been there when I have needed support. Things that happen to me when we are apart are not complete until I share them with her. Only with Marge can I truly be myself and completely relax.”

Less then 5 years later I had my accident. The accident did not just happen to me, it happened to my family but since we had an “empty nest” it was really Marge who had to shoulder the majority of the responsibilities. The readjustment was greater than we ever anticipated. It took a long time. I like to tell people that our dog realized in a few weeks what it took me years to figure out and that was that Marge was now the alpha member of the family. Many couples, unfortunately, do not survive the consequences of a readjustment of this magnitude. We were very fortunate to head into it with a strong relationship built up over 35 years. More often than not people tend to focus on me and the challenges that I have had to deal with. I think many give little thought to the tremendous responsibilities placed on the spouse. My wife epitomizes the wedding vows and lives up to Tammy Wynette’s call to “Stand By Your Man”. Marge, not only cooks and manages our home, she also oversees all my care issues, chauffeurs me everywhere I have to go and puts me to bed every night. I owe my good health and lack of complications to Marge’s supervising my care.

The hardest part of my adjustment is having to watch Marge deal with the physical tasks that have been thrust on her. Yesterday and today February 10 and 11 we received several feet of snow (check the roof of the dog house in the picture). We have a wonderful neighbor who keeps our driveway plowed and open. But there is still a lot of physical work she must do like shoveling the front walk and bringing in firewood. There are also activities she chooses to do like feeding the birds. After my accident we decided that the birds would be a wonderful source of entertainment for both of us. I have built some bird feeders and we have feeding stations all around our house. The snow from the storm is waist deep so movement off paths is extremely difficult. Both yesterday and today I had to watch Marge shovel her way across the lawn, pulling a sled full of birdfeed behind her. She had to shovel in several different places to reach all the feeders. She returned to the house tired from her struggles. Why does she do it? After all it is not necessary; the birds would survive anyway. Marge struggles to feed the birds because she loves them and because she loves me. So Foreigner that’s only one small example of what love is!

P.S. If you know Marge please don’t mention this blog to her because she doesn’t want me to write about her.

Tips for Planning a Fabulous (Accessible) Holiday

2011-02-09T21:08:00.000-08:00

(Image courtesy of http://topbillinmusic.com/)

Today's post is a contribution from Jason Ballerini, who has previously posted his story on DisCo. Jason is a keen traveller and recently took a trip to Bali. Here are some of his general and flying tips for travel from his personal experience as a wheelchair user.

Jason Ballerini

Tips for Planning a Fabulous (Accessible) Holiday

General Tips:

Plan ahead and book early. Accessible resources are limited, so if you require a wheelchair accessible cabin or hotel room, make reservations early to avoid
disappointment - several months in advance if possible.
When making any type of reservation, whether it be for a hotel, medical
equipment, a van, or an attraction, ask VERY SPECIFIC questions. Don't let someone get away with answering you with a quick "yes, we are wheelchair accessible,"
because a lot of times they really aren't. Let them know exactly what requirements you are looking for and make sure that the reservations agent understands what you mean.
Always check and double check reservations. Nothing is more frustrating than thinking you have a reservation for something when you don’t.

Before You Go:

When booking a flight, be very specific about your situation and the requirements you need i.e. an aisle seat, bulkhead seats, seats beside each other, what type of wheelchair you use (manual or electric, wet cell or dry cell batteries), and whether you will need assistance boarding the plane.
If you have a choice between a direct, non-stop flight and a slightly cheaper flight that has connections, take the non-stop flight. You may save a little money by choosing the connecting flights, but the money you save often isn't worth the hassle of having to change planes and the potential problems that go along with it. Changing planes means that the baggage handlers have to handle your wheelchair one more time, and unlike the first leg of your trip where you can show the people who take your chair how they should handle it, you can't give any instructions to the next handlers. There is also more possibility of luggage being lost temporarily if you have to change planes. Connecting flights can also cause issues if for instance, your first flight is a couple hours late departing, you may miss your connecting flight.
Have your wheelchair or scooter routinely serviced before you go so that you are sure everything is in working order for the trip. Bring some extra wheelchair or scooter parts (such as tyre tubes) along on your trip in case you run into trouble during your travels. It is also a good idea to bring some basic tools (screwdriver, allen keys, duct tape, etc.) along in your checked
baggage in case you need to do a little repair work on your chair at your destination.
If there are sensitive or delicate areas on your wheelchair that you will not be able to remove and take with you into the cabin of the plane, put labels on these areas so that the baggage handlers know not to touch or remove them. For instance, label the brakes with a big piece of tape, including up and down arrows indicating which way the brakes go to engage or disengage the chair to assist the handlers.
Check and double check your reservations i.e. seats beside each other, aisle seat, aisle chair etc.

At The Airport:

When you are checking in for your boarding passes and they are tagging your luggage and wheelchair(s), ask them to "gate-check" the wheelchair you are sitting in. Then they will put a tag on your wheelchair that tells the baggage handlers at your destination to immediately bring your wheelchair to the gate (the door of the plane) rather than bringing it to the baggage claim. This way you can immediately transfer back into your wheelchair outside the door of the plane at your destination rather than having to sit in an airport wheelchair first, and be pushed to the baggage claim by an airport official to meet up with your chair. Note that it is not guaranteed that they will be able to bring your wheelchair back to the gate at your destination as it depends on whether or not there is an elevator nearby to bring the wheelchair up from the cargo hold. If not, they automatically just bring it to the baggage claim.
When the check-in agents are tagging your luggage, a lot of agents like to tag the checked luggage of a person with a disability with priority stickers so that they are the first bags off of the airplane and therefore the first bags on the baggage carousel. However, people who need wheelchair assistance are always the last ones off of the airplane, so, if you see the checks-in agents putting priority stickers on your checked baggage, you might just want to tell them that it's not necessary (unless of course you would like it).
Immediately after you transfer out of your wheelchair (and before they take it away), remove any loose or vulnerable parts from your wheelchair and take them onto the plane with you. Baggage handlers are notorious for manhandling wheelchairs. They love to take apart anything they can, so it is important to remove loose parts of your chair and just store them with you on the plane. This includes things like a joystick and footrests. You don't have to put them in your carry-on luggage - just place them in the overhead compartment above your seat.
Secure any loose or moveable parts on your wheelchair that you can not take on the plane with you before they take your chair away to the cargo hold. For instance, if you are checking an electric wheelchair that has a swing-away joystick (or some other moveable part), tape it together so that it is secure and unable to swing out or move.
For those using electric wheelchairs, take the batteries out of your wheelchair personally at the airport. If your batteries do not come out of your chair, make sure you disconnect them and show the airport handler who will be taking your chair away that they are disconnected.

In flight:

Using the bathroom. No matter what the airlines tell you, bathrooms on board airplanes are not very accessible - especially for someone who might require assistance from a caregiver. They are incredibly small and can really only fit one person. You may find it helpful to firstly plan what you eat and drink that day so that you have less need or do not have to use the bathroom during the flight. If you think it is inevitable that you will need to use the bathroom at some point, try at the very least to use the bathroom inside the airport just before you board the plane so that you have less need to use the one on the plane during the flight. The bathroom in the airport will be bigger and far easier to use than the one on the plane. If you do have to use the bathroom on the plane during the flight, it should not be a problem for most airlines. The general practice is that the flight attendant will bring the onboard wheelchair to your seat and help you wheel to the bathroom, although if you require help inside the bathroom and transferring into the chair, you must provide your own caregiver to assist you for that. If you think you may have to use the bathroom on the plane during the flight, make sure to follow up with the airline at the time of reservation and again a few days prior to the flight to clarify their policy and ensure that they will have an onboard wheelchair on your flight.

Empowerment : The Process

2011-02-02T14:10:00.000-08:00

This week Rich Fabend emailed me with another guest post and the comment that he seems to be into writing about empowerment as a bit of a "theme" lately. This post is very thought provoking and I don't think you can ever have too much discussion of empowerment. Thanks Rich!

Rich Fabend

To be a member of the disabled community does not and should not imply we all have the same physical and mental challenges nor do we share the same needs for help and assistance. However, I also feel very strongly that there are certain attributes which can be cultivated which can make living with a disability easier.

When I came home from the rehabilitation hospital and my physical health improved I became desperate to regain some control over my life. In addition to the physical results of my accident I was dealing with tremendous mental anxiety which left me frightened to be alone, afraid of the dark, fearful of the unknown and scared to be in certain places or positions. I started having night terrors and was anxious over my inability to exercise any control over my environment. Prior to my accident I prided myself on the control I had. Having been a licensed New York State Guide for over 23 years, I had taken many trips into the wilderness. I enjoyed the fact I was self-reliant and ready to handle any situation Mother Nature might place me in.

Tripping in Canada

As my health began to improve I knew I had to gain more control over my environment. This was the beginning of what I now call learned empowerment. I was fortunate to have a determination that helped me face challenges head on. I believe attitude is the critical ingredient for empowerment and important in the early stages of recovery but less so after time. With quadriplegia, initially you seem to be at the mercy of everything and everyone. Little or nothing seems within your control. It became vital for me to regain control of some things regardless of the price that had to be paid. The demons came out at night so that’s where I began. Small things at first such as leaving a light on at night, having an MP3 player next to the bed (which I could only turn on using my teeth), an oversized remote for the TV available, a pill box with Xanax within reach and a bed control clipped on my shirt which allowed me to raise myself in bed. As I was able to regain my control in a few areas, I began to realize I could do it in other situations as well. And so began my empowerment. As my ability to exercise control improved, it seemed to become less important because I realized I could do other tasks if necessary.

However, this learning process took years. It was extremely difficult for those around me. They had to be passive observers while the one they loved struggled to master a task. I can remember my wife sitting on the edge of the bed while I attempted to take off my shirt to get ready for bed. Initially it took well over an hour. Imagine the strength and love it took for her to watch me struggle without interfering. The restraint she showed is a great example of when doing nothing is really doing something. I’m sure it went against all her nurturing instincts. Nothing in this new life comes without hard work, frustration, failure, modifications and persistence.

This entire process begs the question what can those of us who have dealt with these issues do for the individuals who join our disabled community every day. What assistance and support can we provide both to help these individuals to minimize adjustment time, ease frustration and regain more control of their daily lives?

The Dating Game

2011-01-30T13:48:00.000-08:00

Happy Monday everyone! I can't believe it's the end of January already. No doubt the supermarkets are already getting filled up with Easter eggs (not that I'm complaining, I LOOOOOOOVE Cadbury Creme Eggs, LOOOOOOOOOVE them.) Anyway, today I have another guest post for you written by Leonie Hazelton. This post was inspired by recent media reports of dating websites specifically for people with disability.

Leonie Hazelton

There are loads of dating sites on the ‘net at the moment claiming they can find love for everyone. There are even sites specifically for people with disability claiming they can match people with disability with other “like” people with disability. I’m not really sure if I’m a fan of stuff like that, because if we’re all into inclusivity, I don’t think launching dating sites specifically for one group whose wants and desires are no different from people without disability is necessarily moving forward.

While I appreciate that it’s safer to date or look for a potential match with someone with a similar disability or condition to you, I don’t think it’s necessarily productive. What if you don’t find someone? It has nothing to do with your disability, only the fact that you have different attractions and interests to other people on the site. Also, what about us antipodeans? Most of these dating and disability sites are US based so it is difficult for us to find a mate with a similar disability to us, let alone being on the same side of the globe as us.

I had a quick look at one of these said sites and A) discovered that there are Australians and B) they’re pretty forward about (in the site’s words) their “Challenges.”

I’m still not sure if I like the idea of specifically disability dating, which brings up the question of disclosure. “When do I tell him/her that I have XYZ disability/condition?”

I really do appreciate that we want someone who understands our needs/wants/desires, but I honestly think that we should not be restricted to one particular group in society. I personally believe that we can educate in all areas of our life. If that means going out on a date with a person without disability and showing them that “Yes we want “it” too” than that’s a way we can teach others. If on the other hand, a person rejects you outright because of your disability, maybe it should just be chalked up as not being worth it because the person’s not going to respect/want you anyway regardless. If someone really wants you, it should be with no strings attached, end of chat. Also isn’t dating about taking chances and risks? You may get hurt, sure but that’s the way dating is, disability or no disability.

I’m interested to know what others out there in blogland think. Do you think you can start an account on a mainstream dating site and disclose later or is it safer to do the disability dating site thing where there’s a field in the profile stating what disability you have so it’s out there from the beginning?

People with Disability in the Australia Day Honours List

2011-01-26T19:10:00.000-08:00

Australian readers will have enjoyed their Australia Day public holiday yesterday, a day of BBQs, listening to the JJJ Hottest 100 and generally enjoying the sunshine. International readers may not be aware of Australia Day and it's history, so you might like to read more about it here.

One important aspect of Australia Day is the Australia Day Honours List, in which Australians are commended for their contributions to the ongoing development of our nation.

In Australia, we have plenty of people with disability doing things to not only improve the lives of people with disability, but everyone else as well. The people listed below have been honoured in the 2010 Australia Day Honours list. Below is a short description of their achievements.

Professor Ron McCallum (AO) (Senior Australian of the Year)

Professor McCallum received his award for his commitment to the rights of working people. He was the first totally blind person to gain a full professorship in any Australian and New Zealand university. He went on to become the dean of law at Sydney University, where he specialised in industrial law. He is currently the chair on the monitoring committee for the United Nations Convention on the Rights of Persons with Disabilities. He is also involved with 2RPH (Radio for the Print Handicapped) Vision Australia and the NSW Disability Council.

“Uncle” Lester Bostock

Uncle Lester received his award for services to the media, indigenous people and people with disability. He was the first indigenous president of SBS radio and producer of radio programs. He has been a board member of the Aboriginal Disability Network since its founding in 2002 and has been a member of People With Disability Australia since 1995, becoming a life member in 2005.

Joe Mannix

Joe received his award for services to the community through advocacy, social welfare and disability services. He has served on the boards of organisations such as the Disability Discrimination Legal Centre, People With Disability Australia, Glebe Youth Services, Rozelle Neighbourhood Centre and the Tenants Union of NSW. Joe also tutored seniors computer programs in 2006.

(This information has been taken from www.gg.gov.au)

IDEAS NSW would like to offer congratulations to Professor McCallum, Uncle Lester Bostock and Joe Mannix!

Mental illness is not contagious, mental illness is not a choice, KNOWLEDGE IS POWER!

2011-01-26T14:02:00.000-08:00

I recently came across Kim Hix's blog and I really appreciated her open and honest descriptions of her experiences being a parent of a child with a mental health diagnosis. Kim has approached parenting with a great amount of creativity, and I loved reading about the book she has written for her son called "No one is perfect, and you are a great kid". Doesn't that say it all? I am really pleased to have Kim as a guest blogger today. Thanks Kim!

Kim Hix

I was asked to write a post so kindly by Emma and am more than honored that she asked. When deciding what to write about she suggested what I know, or what I am passionate about, so that was pretty easy. I am passionate about my kids, and especially bringing awareness to Mental Health issues in our children. More specifically to "Stomp Out Stigma" (see our cause on Facebook and join http://www.causes.com/causes/375639)

I am passionate about this subject because my oldest child, Zack, now 15 was born with and has developed an array of mental/emotional illnesses. To date, he is diagnosed with IED (Intermittent Explosive Disorder ) OCD, ADHD, Severe Anxiety and a strep infection brought about TourettesDisorder Spectrum (this is called PANDAS, Pediatric Autoimmune Disorder Associated with Strep), as well as 3 head traumas.

So, with all of this, needless to say our lives are quite chaotic and uncertain most of the time. However, Zack is quite a loving, HUGE hearted, caring, smart, and talented boy. Life with a child such as mine is "Predictably Unpredictable" as parents who love a child with any kind of disability will know and be able to relate to. I have devoted my life, since his birth, to helping him to become the best person possible. I am also determined to help other families on this same journey realize the are NOT alone, and to help others that do not have intense children as I do, realize that inappropriate, bad behavior does NOT = a bad kid. So many people see only the behavior, usually exhibited when the child is unstable, as a child out of control, manipulative, mean, spoiled or attention seeking. In most cases this is not the true personality of the child. I want people to understand that some kids, as well as adults, simply can not control emotions, responses, reactions or behavior, not because they do not want to, but because their brain simply will not allow it.

I can obviously go on about this subject for hours but will not do that here. I have started a blog to hopefully share our story with other families that are on the same journey we are, to let them know that their circumstances are NOT unique. Along with my site www.youareagreatkid.com that offers some resources as well as the childrens book I wrote for and about Zack to help other kids like him who feel different. If we, as a society, talk more about this then the stigma will eventually fade. If you would like to read our story please follow our blog here:http://goodboyroy.wordpress.com/our-story-the-journey/ from the Goodboyroy.com site. And if you want to know what is GoodBoyRoy.com, well....you can find out about that too.

Remember, you, as the parent, are your childs BEST advocate. The more you know, the better equiped you will be to help them and help others understand. I will leave you with this, our motto: Mental Illness is Not contagious, Mental Illness is NOT a choice, Knowledge is Power.

Learned Empowerment or Learned Helplessness. Your Choice.

2011-01-24T16:42:00.000-08:00

Today we have another post from Rich Fabend. I really enjoyed the practical and commonsense nature of this post, and I think Rich's tips for finding creative solutions are relevant to all of us whether we have a disability or not. We all face situations which we can easily "put in the too hard basket", and as Rich says it's your attitude that determines whether or not the situation gets put in the basket or taken back out!

Rich Fabend

I sat in the chair looking at the piece of paper I had just dropped on the floor. I needed the paper for what I was doing so I had to pick it up. No big deal. Right? WRONG, it was going to be a problem. I couldn't bend over to get it and I couldn't get out of my chair and walk over to pick it up. You see the chair I was sitting in was a power wheelchair. Many of the simple reflex actions I used before my quadriplegia still came to me rapidly when I needed to solve a problem. Today was different and I knew it. My wife and my nurse were both gone at the time and so was the option that they could pick it up for me. I knew I had a major challenge before me the resolution of which would affect me the rest of my life.

As a teacher I had been working with students for over 34 years and was involved with some unique adventure based activities which tried to teach students to find alternative ways of problem solving. Mostly as a result of these experiences I truly believed there was a simple way to pick up that piece of paper. The real challenge I faced was to figure out how to do it. The solution finally came to me although it was not that day. Like most of my problem solving creations the answer was the result of hard work, frustration, failure, modifications and persistence. The ultimate success of my solution encouraged me to move on and find other simple methods of adapting ways l could solve other everyday challenges.

I believe the key lies in one’s attitude. It is human nature to rely on methods and solutions which have been successful in the past. This often encourages us to use only limited means to accomplish a given task. When speaking to a group I like to use the example of catching a fish. If I choose ten people in the audience and ask them to catch a fish for me, chances are great the majority would grab a fishing pole and head to nearby body of water. When initially dealing with the challenges placed on those of us living with a disability, I think we often try to solve problems using the same skills we used before our impairment. This approach can create extreme frustration and an acute awareness of the limitations placed on us by our condition. Now suppose I presented this same challenge to an audience of people from the United Nations.

It is a real probability we would see a variety of methods which could include nets (both casting and stationary), wiers, noodling, spears, spear guns, bow and arrow, or use of other animals, such as cormorants and many additional ways. So in reality, if we think about it, there are usually many ways to solve a particular problem. The first attitudinal change must be the understanding that more than likely there is a solution for what you are trying to do. Begin by freeing ourselves of cultural restraints. At times such limitations are really in our own minds. Learn to think outside the box and experiment with different approaches. I have become convinced over the last twelve years that attitude is much more important t than ability to individuals who are physically challenged. Looking at a new situation not as a problem but as a challenge needing to be met, may actually set one’s mind free of the mental restraints which prevent finding a solution. This initial attempt at finding a solution, I believe, is of critical importance because it will establish a lasting mindset. I can or I can’t; which will have greater significance for the future? If we give up or allow failure to deter us from continuing, the implications are obvious. Failure, if approached with the right attitude, provides opportunity for learning and hence for growth which eventually can lead to success. If a small child decided there is no reason to continually struggle to get up after falling down time after time, he or she would never learn to walk. I had a graduate student in a workshop sum up my supposition in an e-mail she sent me: ”I was particularly struck by your juxtaposition of self-created learned helplessness (I can't do that, so how can I do this) with what I might call learned empowerment (I can do that, so why can't I do this?)”

Some suggestions I would make in regards to finding alternative solutions:

1. Know there is a way.

2. Keep things simple.

3. Don’t get discouraged and give up. Professor Randy Pausch in his book The Last Lecture wrote, "The brick walls are there to give us a chance to show how badly we want something".

4. Think of failure as an opportunity for learning and growth.

5. Observe with an active mind. After noticing hockey and lacrosse players had placed continuous wrapping of tape on their sticks to prevent their hand from sliding past a spot, I decided to do the same. The placement of these “stops” allows tool manipulation without a strong grip.

6. Think outside the box.

7. When possible make tools multi-functional. Try to create tools that can be used for different purposes.

8. Make tools interactional. Any one of my tools can be used to pick up a different one if I should I drop it.

9. Be willing to modify. I am constantly revisiting the tools and ideas I have already come up
with to try and improve them or make them more functional.

10. Be open to the suggestions and ideas of others.

11. Remember success builds success.

How did I pick the paper up? Go to web page http://www.handihelp.net/8187/index.html

Maternity Rolls: Pregnancy, Childbirth and Disability

2011-01-19T16:19:00.000-08:00

After blogging about pregnancy, parenting and disability last week I thought it was rather serendipitous to discover a book review of Heather Kuttai's "Maternity Rolls: Pregnancy, Childbirth and Disability" written by Judi Lipp from Northcott Disability Services in Volume 26, No 4, of the Journal of Independent Living Centres Australia.

The editorial description of the book on Amazon says "combining ethnology and memoir, this fascinating book describes the issues surrounding childbirth and motherhood for disabled women. The author, a paraplegic, tells about her own hunt for medical advice before getting pregnant—and then about the normal births of her two children—before widening the conversation to other disabled women and sympathetic members of the medical community."

Judi Lipp's review provides a little more detail. She says "this book is beautifully written and structured. Thoughtful quotes add meaning to the pages, diary entries emphasize the personal tone and extensive notes and references add weight to the well researched content. This book challenges the beliefs that people in wheelchairs need care, and cannot be caregivers."

I'll definitely be requesting this book at my local library. I'd be interested to hear if anybody else has heard about it, or even better read it? Any other book recommendations on this theme?

Crossing Over

2011-01-18T13:32:00.000-08:00

Today we have Rich Fabend's first guest post for 2011. I really enjoyed reading this post which touches on dreaming and spirituality. Thank you Rich!

Rich Fabend

It's estimated that approximately 10, 000 individuals suffer permanent paralysis from spinal cord injuries (SCI) every year in the United States. While most are ordinary citizens sometimes it happens to well-known celebrities like Christopher Reeve. Reeve, a famous actor, was probably best known for his role as Superman in a number of movies in the late 1970’s. Reeve’s fall from a horse in 1995 left him a quadriplegic. As an activist for SCI he brought much attention to this condition. He died in October 2004.

Christopher Reeve and I have several things in common besides quadriplegia. Although uncommon we, both had very little atrophy as a result of our paralysis. In the 12 years since my own accident I have lost only three quarters of an inch off my calf muscles. Another thing we had in common is that neither of us had ever dreams with ourself in a wheelchair. The only exception for me was one night, after a very nerve-racking out of control situation during the day that really scared me. Excluding that single time, I live in two worlds; the reality world where I am physically confined to my wheelchair and the dream world where I am free of any constraints. Many mornings I wake with pleasant memories from my night’s sleep. The dreams are extremely vivid and realistic, filled with physical activities rooted in my pre-accident life. I am often running through open woods pursuing a turkey I hear in the distance. (I am an avid hunter).

My "Dream World"

At times I’m riding my bike at a frantic pace feeling the wind on my face. Other times I am swimming in the Hudson River where I grew up as a child. Recently, I dreamed I was lost in a large construction site which was more like a maze than anything else. Frantically I tried to get out; running, jumping over obstacles, climbing and even lowering myself over walls and then dropping to the ground. My dreams seem so realistic that often I am disappointed when I have to get up and “change” worlds.

As I’ve grown older I have begun to think more frequently about dying. I don’t consider myself a religious person but rather more of a spiritualist. For a Christmas gift I received a CD of Christmas music by Annie Lenox. Besides the moving song Universal Child I found a wonderful explanation of her personal religious beliefs in the jacket lining. She wrote:

“While I don’t personally subscribe to any specific religion, I do believe that the

heart of all religious faith has to be rooted in love and compassion, otherwise it

serves no purpose.

For me, the word ‘Christ’ represents the sacred and mysterious divinity of life…

this could just as easily be ‘Buddha’ or ‘Allah’.

The words from the Bible, the Torah, or the Koran are too often misused to justify

viewpoints that oppress defy or create discord rather than engendering empathy,

harmony and respect for each other, accepting and embracing our differences,

whilst realizing that we are all human with the same strength and weaknesses.”

Friday night I had another very vivid and physically active dream. I was running and climbing in a beautiful fall woods. I was with two neighbors from where I used to live. I could hear the leaves crunching under our feet as we ascended the hill. Periodically, we would stop at a clearing in the woods to look at the beautiful vista that was open before us. My friends were much younger than I was and so I was constantly trying to catch up. When I did, we would stop, talk, drink some water and then we were off again. After a while I became aware of a buzzing noise which seemed very out of place. I realized it was my wife's alarm clock; and slowly and very reluctantly I began to return to my other world. I have no personal belief in heaven or hell but I spent the better part of the morning thinking how wonderful it would be if the process of death could just be the Crossing Over from my reality world to my dream world.

My "Reality World"

A little more of One Month Before Heartbreak

2011-01-17T14:32:00.000-08:00

Today's post is another One Month Before Heartbreak reblog (with the author's permission of course.) You can read the original post here. If you haven't already read the hundreds of posts up on the One Month Before Heartbreak site, I wholeheartedly recommend doing so.

Dermorgenstern

The heartbreak has already started, it started the first time a government minister raised the idea of changing Disabled Living Allowance (DLA).

I’ve been trying to write something for One Month Before Heartbreak, it’s been frustrating because it never quite works. So here I am again, trying a different angle in the hope I can write something I’m happy with.

I was reminded recently of a quote from Thomas Jefferson, third president of the United States.

“When governments fear the people, there is liberty. When the people fear the government there is tyranny.”

As a disabled person living in the United Kingdom today, that quote means something to me. To be honest, it’s meant something to me for quite a while, the tyranny started long ago.

Disabled people in the UK have feared their government for a while now, maybe not in the form of a particular government minister, maybe not in the form of the government itself. But certainly in the form in which most disabled people come face to face with the government, through the DWP, or one of its proxies known as Atos healthcare.

I can only describe my own experiences, but I do know that many other people have had similar experinces.

It starts with a letter from something called Atos, the first time you receive one you read it through and think, oh, it’s a medical, that’s fine. I know that I’m disabled, my doctor thinks I am, so does the specialist I’ve been seeing, I know they have both sent supprting statements for my claims, I’ve seen those statements.

On the day of your ‘medical’ you go through your usual routine not knowing any better. I sat with my Tens on for about 45 minutes prior to leaving, just to make my life a little easier as I do every morning. You turn up with the copy of your letter, your proof of ID, and you wait, and you wait. Eventually you’re called into the exam room and the questioning starts.

This is where you slowly start to wonder what is going on. I started answering the questions I was asked only to be told about half of the time that I was answering them in the wrong way, I also kept being told that neither I, my GP, or the specialist knew what we were talking about. I was also told that some of my symptoms couldn’t possibly be connected to what was supposed to be wrong with me.

The physical examination came next, but it wasn’t an examination, it was an assessment. He just wanted to see how far I could move, and again I was in the wrong. By this time the effects of my using the Tens earlier were wearing off and I was feeling rapidly increasing levels of pain. Obviously my range of movement reduced as the pain increased, trying to explain this to him was pointless, as was trying to tell him that I could do many of the things he asked me to once, but that trying to do it a second or third time would be too painful. He didn’t care.

By this time, I was in a lot of pain, I was confused and I just wanted it to end, but no, he now wanted to read back what I’d told him to make sure that I was happy with what he had written. I really didn’t care and as what he said sounded vaguely like what I thought I’d told him, I just agreed and said I was happy, anything to get this ‘medical’ over with and get out of there.

A few days later I found out what a mistake I’d made, although I had been given an award, his slight twisting of what I’d said had made it appear that I wasn’t really quite as bad as I was. After what I’d been through I didn’t really want to make a fuss, but I steeled myself and rang the DWP. After I explained the situation I was told that I could go through the whole thing again and be reassessed, but that it was doubtful it would make any difference to my award, and that I could make an offical complaint, but for that to be successful I would have to show that there was a substantial difference between what I had said and what he had written.

At that time, with no experience of the benefits system, having just been through one ‘medical’ that left me in great pain and feeling humiliated, and realising that no matter what I said, there was no way a complaint would make any difference, I gave up.

What that first examination, and the ones that followed have taught me, is that you learn to fear those assessments, you learn to fear Atos and it’s employers, the government. You fear the assessments and Atos because no matter how many times you go for them you have no idea what they are actually looking for, what the criteria are, or how qualified the person assessing you is to make a judgement about you. You fear the state because no matter how badly Atos treats people, no matter how many times they screw up and no matter how many appeals against their decisions are won, the government keeps renewing their contracts. I worry that I will be the next person who will have my benefits stopped on a whim and have to fight to regain them.

So now, when that envelope drops through the door I start to panic, I stop eating properly, I stop sleeping properly and that goes on until I have been for the assessment and it carries on until I get the next letter with the decision.

None of that is good for my health, but now it’s worse, I fear what the government will do with DLA. This time though, I have a month until the consultation is over, and then there will be a wait to see what the government will do. So I can look forward to at least another month of ruined sleep patterns, alternatively not eating properly and binge eating for comfort. At least another month of fearing what this government will do.

I spent close to seventeen years serving this country in its armed forces, do I have to spend as many years fearing this tyranny, and the ones that follow it, as they try to remove my freedom to have a life worth living?

One Month Before Heartbreak

2011-01-16T13:53:00.000-08:00

Today’s post is written by Carl Thompson who is the man behind the fantastic blog Working At Perfect. Carl is from Victoria, Australia, and describes himself as “Wheelchair User (Cripple), Writer, Student, Music/Audio Nerd, Gamer and Cricket Tragic”. He writes regularly for the new ABC Ramp Up site and for DiVine Victoria.

I first came upon Working at Perfect a few weeks ago and since then I’ve enjoyed reading Carl’s thoughtful and humorous posts, and I am really happy that he will be contributing to DisCo over the coming months.

A little background to today’s post... Have you heard about One Month Before Heartbreak? It’s a Broken of Britain event organised by some UK bloggers including Emma Crees who as you will remember has guest posted here before. One Month Before Heartbreak is a “blogswarm” event, similar to Blogging Against Disablism Day, involving people getting together to blog about a subject or theme during a specified time period. The “swarm” of blog posts should attract attention and raise awareness.

So why is it called One Month Before Heartbreak? On Emma Crees’ blog A Writer in a Wheelchair, in the United Kingdom there is an ongoing discussion about DLA reform ends on 14th February 2011. Emma explains that 14 February is “Valentine’s Day, traditionally a day for love but which could severely affect disabled people if DLA reforms aren’t handled correctly. We need to ensure that our voices are heard. We’re holding this event a month before the consultation ends in order to raise awareness of the consultation and give people to chance to respond to it if they wish. Bendy Girl came up with the name of this event.”

I hope you enjoy Carl's post. It's fantastic to see how much unity One Month Before Heartbreak is demonstrating both in the UK and across the world. (Thanks Carl!)

Carl Thompson

Luckily for me, I'm not an English citizen, and I'm not facing drastic transformational change in every facet of my life in the coming months. I have stability, I know that I am eligible for my much-needed disability support pension payments, I know when I will be paid and how much I will receive. For me this is clear. Unfortunately, for English citizens under the Conservative government led by David Cameron, all people with a disability, their carers, families and friends will be profoundly affected by a proposed drastic change in the degree of financial support they will receive.

As mentioned prior, I'm not an English citizen. I don't claim to know the ins and outs of their welfare system or their political structure. Here I will not waste words trying to explain to the letter what the changes will be - it would be much wiser to read the ‘One Month Before Heartbreak’ entries written by actual British citizens if this information is what you seek. What I do know however, is that English men, women and children are facing the repercussions of the implementation of multiple government policy changes that aim to pull their country out of a recession - seemingly a noble cause.

The question is how should this be done? Well, according to many governments around the world, the answer is by introducing spending cuts. Cutting wasteful spending and cutting discretionary services are two common methods of tightening a nation's budget. So let's think about that for a moment, and try to relate it to be problem this whole piece is about. In what conceivable way can money that is directed to supporting millions of Britons living with a disability be deemed wasteful or discretionary? This money is used for these people to survive, and survive being the operative word - This money is not surplus to their needs, it's barely enough for them to live day by day. So why is the government even considering making regressive changes in this ever so important area? I don't know the answer, if you do, please tell me.

So let's assume the money has to be cut from somewhere and inevitably someone has to lose out - we can't all be winners now can we? But doesn't it make sense that the government should implement cuts, or perhaps raise taxes on those who can actually afford to cope with the changes? Admittedly, I'm not an economist, but I'm also definitely not a socialist. I do believe in commonsense though, and the slashing of payments that are vital for keeping people with a disability afloat does not make any sense in my mind - none at all.

But wait! On the other hand, it does make sense – if you have to disadvantage someone, if you have to cut money from an interest group somehow, why not cut it from those that the government perceives will make the least amount of noise? How about we make spending cuts affecting those who won't be able to fight back or make a fuss? People in the deaf community won't hear about the cuts on the radio and those with a vision impairment may not be able to read about them in the morning newspaper. Users of electric wheelchairs would not be able to climb the steps of Parliament house to protest their governments' changes and the bedridden are of no risk of protesting in the streets. Now perhaps, the cruel motives behind these cuts are starting to become clear.

There is hope however, and that is the Internet. To be honest, if their archaic policies are anything to go by I'm not sure the Conservative party in Britain quite have a grasp on how the Internet works just yet, but hopefully they will find out soon enough. I'm told that I personally spend too much time online, and many of my online friends with a disability have similar Internet habits. So what does this mean? People with a disability can protest, we can type - be it via Voice recognition or otherwise. We need to use our strengths and rally together as one.

The Conservative party of Britain will realise that people with a disability do indeed have a voice, an opinion, and maybe more importantly, a vote

Being Disaster Prepared

2011-01-13T13:39:00.000-08:00

I'd like to thank Leonie Hazelton for offering to write today's guest post about being disaster prepared, particularly if you have a disability.

Leonie Hazelton

Everyone who has commented on blogs such as the Sydney Morning Herald online, Twitter and everywhere else in the media says how devastating the floods in Queensland, Australia, are and how sorry they are for the people who are affected.

I empathise with these things, but it got me thinking, how would natural disasters or emergencies affect you if you had disability?

I know personally I’m worried about family up in Queensland with disability and I’m concerned about what would happen to them if they were told to evacuate. Would they be prepared? Where would/could they go and how would they get there? Also, what would happen to their dog?

I decided to consult my internet best friend, Google, and found this site by (appropriately) the QLD government discussing this thing called REDiPlan, sponsored by the 1st National Real Estate Foundation. It’s a booklet and a series of worksheets for people with disability and their associates about how to prepare for emergencies or natural disasters, and you can find it here.

I had a quick read before I posted and while all this stuff seems like common sense, as a community in general, we don’t like to think about this until after the event, and that’s a bit too late.

I found these tips useful in preparing for disasters and wondered about how personally I could implement these in my life.

Know Your Neighbours

Thankfully we’ve got great neighbours who have helped us out in disasters of our own. (Power outage) They’re organised and have good emergency readiness skills. (He’s a scout leader) And even though we don’t know the other neighbours as well, we know that we can call on them in an emergency situation.

Prepare a kit

This is where the organised bit comes in. Being a disorganised person, this could be where my disaster plan falls on its face. In the kit, it’s suggested you have things like water, canned/dry food, torches, globes and batteries, spare batteries and charges for your mobile and any other device you may use. E.g. hearing aids, wheelchairs etc. According to the info in the booklet, you should check your kit about every six months to a year. That’s also where it falls down for me as these sorts of things are the things I forget. You may want to put it in your phone so you remember.

Another good resource to use when thinking about what to put in a kit comes from here.

Be Informed

It seems obvious; but many of us don’t think to use “Old Fashioned” methods of communication like radios. We rely so heavily on things like the internet that we don’t think about other media. Another thing is that radios don’t necessarily require electricity. (Make sure you buy a battery powered one and spare batteries.) They’re as up-to-date as any website (if not more) and they’re not reliant on electricity or phone lines.

Follow Orders

We have all heard the coverage in the media from authorities saying that residents ignored warnings to evacuate. We love our bloggers very much and want them to continue to read our excellent posts, so please DO AS YOU’RE ASKED!!! If police, SES or other authorities ask you to evacuate, do so. If they ask you to stay, also please do so. (Make sure if you can ahead of time that you have your emergency kit ready.)

Disability + Pregnancy

2011-01-10T19:09:00.000-08:00

I have heard many women talk about becoming “public property” when they are pregnant. Total strangers like to pat a pregnant belly and ask the gender of the baby, food and drink choices are scrutinised. In short, everybody has an opinion about everything and they don’t mind sharing it!

What happens if you add “disability” to pregnancy? And “disability” to parenting?

From my experiences as a worker and from listening to the stories of parents with disability, it seems to me that if you are a parent or expectant parent with disability you can expect at least a double whammy of the usual public scrutiny.

Judith, a parent with a physical disability, asks “why do people have such a hard time dealing with disability and pregnancy together? Is it because the disabled as a group are seen as asexual or childlike and are thus not supposed to reproduce? Is it because people are afraid we are irresponsible and unable to care for our children properly? Or is it because people are afraid our children will also be disabled and will add to the burden we already place on society?”

Anecdotally it seems that it’s not just total strangers who question the ability or right of people with disability to become parents.

Trish Day created the website disabledparents.net after she had a range of interesting experiences during her first pregnancy. Trish says “the few people I had met who were parents with disabilities warned me. They all told me that many people in our society have definite opinions about people with disabilities becoming parents. They said that total strangers would accost me and tell me that I had no business being a mother. I spent many months planning how I would respond to these people, but each incident that happened wasn't on the list of what I expected. I never knew quite how to respond. One day, a co-worker, who I'm sure didn't mean to offend me, said, "I'd like to see how you're going to take care of a baby!" I can't remember what I said, but I remember thinking to myself, "I'd like to see that, too!" Growing up disabled, my parents sheltered me, and I never had the opportunity to take care of a baby. I helped with changing a diaper once when I was 10, but was never left alone with a baby in my life. I didn't know how to lift a baby or feed one, and I didn't and I didn't know anything about feeding and dressing. I went back to my desk in a panic.

As I sat at my desk, I realized that no baby is born holding an instruction book. Thank goodness for that; I could make up my own rules as I went along, and if I were lucky, the baby wouldn't notice that I was different. Maybe the baby wouldn't notice that I was doing things differently because he or she wouldn't know any other way. A similar philosophy has guided me through my life as a disabled person. If I've never experienced the things that the rest of the world thinks I'm missing, then, in my own way, I am "normal," whatever that is. So maybe the same approach would work for baby; at least I was hoping so.”

I love Trish’s approach and I think she hits the nail on the head when she says that no baby is born with an instruction book. I figure that most new parents have to do their best and make it up as they go along, disability or no disability.

Disabledparents.net also describes some of the equipment related challenges of parenting with a physical disability, along with suggestions, solutions and advice about equipment providers. Reading about modifications made me think about other uncommon baby products, for example prams for triplets. According to Hellin’s Law only 0.013% of births are triplet births, yet with a simple Google search or a trip to Babies R Us you can view or obtain information about a range of appropriate prams and joggers. Statistics on the prevalence of physical disability vary, but in Australia it seems that somewhere between 10 – 15% of our population identify as having a physical disability. Of course not all of these people are parents or intent to become parents, but even so, you’d think there would be a big market for modified baby equipment. So why is it easier to find a triplet pram than a modified pram for wheelchair users?

Are you a parent with disability? Or a person with disability who looks forward to having kids in the future? What is the best way to overcome the frustrations and challenges of negative public perception?

Weddings and Wheelchairs

2011-01-05T14:37:00.000-08:00

When I was planning my own wedding I used to read a blog called Offbeat Bride, and one of the first things I noticed was the diversity of "brides" (and very offbeat weddings!) featured. With my wedding anniversary coming up, and plans to attend the wedding of a very dear friend this weekend I definitely have weddings on my mind, and I remembered reading a series of excellent posts about wheelchairs and weddings.

Some posts focus on brides and grooms who use wheelchairs, for example this post in which a reader seeks advice about her upcoming wedding:

I'm a bride who's disabled (I don't want to say I'm CONFINED to a wheelchair, but I do need one when I don't feel like crawling on my hands and knees.) My experience as an oft-seated individual is that beautiful dresses don't have quite the same visual sweep on me as they do on someone standing up.

It's also my experience that it takes people a minute to notice that I've entered a room, because I'm just simply not at their eye-level. So I've never really been able to do any real entrance-making. How do I make a little drama when I go to walk down the aisle?

Also, what kind of gown would be visually stunning for a bride who's sitting on her ass? And is there a way to convey me down the aisle that makes it so I'm looking at my guests and not up at them? -Nicolette

The response comes from Andy, whose very very cool wedding was also featured on Offbeat Bride. It's rare to see representations of beautiful, trendy, fashionable women who use wheelchairs. I love seeing a bride who "rocks a wheelchair" featured in popular media.

Offbeat Bride also has a series of posts and links to other "disability friendly" weddings, most notably "a wheelie special wedding."

I'd be interested to hear your thoughts on the representation of people with disability in the media. Do you find the images of Andy's wedding as positive as I do?

*Photo Credits: Andy and Jeff's bright green and design detailed wedding, from Offbeat Bride

Slayer Wheels

2011-01-04T14:22:00.000-08:00

Today's post is written by Alex Cochran, founder of Australian company Slayer Wheels. I think you'll be interested in the story behind a fabulous new concept and company. You can find Slayer Wheels on the web at www.slayerwheels.com

Alex Cochran

We had it all organized. After a leisurely sleep in, Desiree and I would hit the laneways of Melbourne to do a bit of window shopping and some serious latte consumption. We had been spending a few days in one of Melbourne’s boutique hotels after attending a wedding.

Desiree had been complaining of a headache the night before, but this was nothing really unusual. It was 8.30am when we woke. Desiree was not her normal self; it was then that she said she was blind in her right eye. I took a look and there was no blink response. She walked to the small ensuite bathroom we had, and then buckled to her knees. I rang reception for an ambulance and in no time we were in the emergency intensive care unit of Royal Melbourne Hospital.

I knew deep down that the symptoms Desiree displayed were classic stroke symptoms. But she was young! Surely she couldn’t have had a stroke.

It was confirmed, Desiree had suffered a significant “cerebrovascular accident” as the doctors called it. The next 3-4 days would be critical. No one would confirm for me that she would survive. The only comment I can remember well was one of the senior nurses saying to me, “You know, your life has changed forever”.

That was 5 years ago. Never a day goes by where I don’t recall those words. I was a senior executive of one of Australia’s leading retailers, living in Sydney, working 15 hour days and travelling the world developing products to sell on our shelves. How different my life is today.

Desiree did survive. After she was stabilized she spent 2 weeks in Royal Melbourne Hospital then was airlifted back to Sydney, our hometown, where she spent another 6 weeks in Royal North Shore Hospital and then another 6 months in Royal Ryde Rehabilitation Hospital. Over this time she progressively regained her speech, and most of her cognitive abilities. However she has never regained any movement in her left arm and only about 20% functionality of her left leg.

When it came to choosing a wheelchair Desiree wanted something that would express her personality. After all her wheelchair would become the first thing people would see. Her chair was now to be part of her life. We spent weeks looking at different chairs. Could we find a “fashionable” wheelchair? No way. It was as if once you became disabled you had to “check in your personality” at the door. The best we could do was a bright red Invacare Action 3 model. But this was far from any “fashion statement”. You could do so much more.

I made a decision at this point to research wheelchair design from the point of view of fashion. The more I read, the more that I became disillusioned. Over the last 20-30 years there had been a considerable amount of research into wheelchair wheel design and wheelchair handrim design. What this research had clinically proven is that changes to the design of wheelchair wheels and handrims can have an extremely positive effect on the long term quality of life of manual wheelchair users. But sadly very little of this design innovation had found its way into wheelchair wheel production.

I continued my research over the next few years and waited for an opportunity to bring these thoughts to reality. Just recently a long-time friend purchased a bicycle wheel building business and he was looking for new products to diversify the business. What better than wheelchair wheels!

Here was my opportunity. We could start a company that produced wheelchair wheels here in Australia. Not only would these wheels use design principals clinically proven to improve quality of life, but we could also inject a bit of fashion. So was born Slayer Wheels. (http://www.slayerwheels.com/ )

It is still early days and we are developing up our product range, but I think we are going to get there. We have convinced a manufacturer to make a range of coloured handrims, we have sourced a range of low weight rims and hubs (also in a range of colours) and we know we can build a better (and more fashionable) wheelchair wheel. We are now working on our pricing and production techniques to get the wheels to market at the lowest price we can.

Now we need to get the word out. Please visit our website at http://www.slayerwheels.com/ and look through our range.

To help us get the word out join our mailing list so we can keep you informed, but above all please “Like us on Facebook” by clicking the Like Button located on the bottom of any page.

Hello {and a thoughtful post at A Boy With Aspergers}

2010-12-22T14:03:00.000-08:00

Hi everyone. I'll be posting on this blog on Alyssa's behalf for the next few months and I will be doing my best to locate and post interesting and thought provoking information about disability.

Earlier this week I read a post on A Boy With Aspergers which speaks about the experience of being excluded from school, and the impact of this type of exclusion upon kids with disabilities. This is a subject that is very close to my heart because in the priviliged world in which we live we should all have a right to an education. Head on over and have a read...

Farewell

2010-12-21T20:06:00.000-08:00

Hi everyone,

Unfortunately I am leaving my work with IDEAS NSW so will no longer be posting on this wonderful blog. I will passing the buck to Emma Doukakis, a very skilled and lovely writer. I have enjoyed sharing with you the stories of many that offer inspiration and understanding while touching the hearts of us all!

I hope that you will be able to share with the world your own story and to really express your experiences, as we all need to come together if we are to see changes and make a difference for the lives of people with disabilities, their families, carers and supporters.

It's been a pleasure writing in this space.

Alyssa

Hon. Kelly Vincent MLC featured in 2010 Made You Look Magazine

2010-12-08T13:58:00.000-08:00

Hon. Kelly Vincent MLC was featured in Made You Look Magazine 2010 (part of the Don't DIS My ABILITY Campaign) as an inspirational representative for disability and all things related.

After her election to State Member of the Legislative Council in South Australia, Kelly has rised to the challenge of being one of few politicians with a disability. Taking her place as a Member whilst using a wheelchair for mobility has certainly expressed the colours of political culture as we see them today, finally our political landscape moves away from the greys of the conventional and we start to see the greens, blues, pinks and yellows of a new day and age where anybody can be somebody, if you put your mind to it!

The inclusion of Kelly as a Member is remarkable considering that she is only 21 years old! To achieve such a place in society where your words really mean something, at such a young age is what sets her person as an inspiration. In the disability sector, if we can aspire to follow her words, to have our own and to share these with others to really change the society and it's view about disability, maybe we will start seeing some changes to the stand of equality!

Interestingly enough in the article Kelly states "...this wasn't something I was intending to do with my life. I didn't want to be the youngest member of Parliament of South Australia and the youngest woman elected to any Australian Parliament - I wanted to be Paris Hilton!"

I think I can safely represent Australia here and say that we are relieved that this path was chosen, this world can only handle one Paris Hilton and often that is too much!

Well done Kelly!

Visit the Don't DIS My ABILITY website to download your copy of Made You Look.

The Story of Josh Vander Vies - Canadian Paralympian

2010-11-23T20:01:00.000-08:00

Hi everyone,

I have another treasure to share with all of you today, a story from an inspirational individual who has carried his disability with his head held high and has inspired family, friends, students and others to believe and suprise themselves!

Josh Vander Vies represented Canada at the 2004 Paralympic Games in Athens, Greece in the sport of Boccia. Josh was born without limbs, but has not let this stop him from creating an amazing life, overcoming challenges and having an amazing attitude. Here is his story.

Josh Vander Vies

The stadium in Athens was at its capacity – 85 000. As I lined up with my fellow Canadian athletes, I could hear the roar of the crowd. It was muffled. We were outside the arena and the air was not still. It shook.

When I crossed the threshold, saw the mass of people celebrating, and heard the deafening cheer of voices pounding elite athletes from around the world, I smiled. I had made it. I represented Canada at the 2004 Paralympic Summer Games in Athens, Greece and finished amongst the top Boccia players on the planet.

Some years earlier, my mom Sandy, came out of the caesarean delivery of her first-born very groggy, as her husband Gary waited eagerly in another room. My mom had had an uneventful pregnancy and had to deliver me caesarean style, because I was breech. As she shook off the drugs, she asked the nurse: “Is it a boy?” The nurse replied that it was, with a small smile. Sandy then asked: “Does he have any hair?” The nurse didn’t know – she was preoccupied with other, seemingly disastrous features.

The doctors explained to my parents that I had been born missing all of my limbs and gave a prediction of my future so bleak that my parents blurted out: “Is he going to die?!” The doctors, a little surprised, laughed and said no that I was perfectly healthy, just without most of my arms and legs. My parents wanted to see me.

When I was brought out to them for the first time, they both took turns kissing me all over and telling me that they loved me. They spent the rest of my life, so far, showing me.

They encouraged me to set hard goals and do what it takes to achieve them. Instead of putting me into a segregated school for children with disabilities, like the experts advised, my parents – unilingual English speakers – enrolled me in a local French immersion school so that I would have a bit more of a challenge!

As I grew, I became interested in physical activity. I joined a swim team for athletes with disabilities and soon competed in Swimming, Shot Put, Discus and Javelin. Then I discovered Boccia – the international Paralympic indoor version of the Italian past time – and was hooked on the intense skill, precision, strategy and competition of pushing myself to get better and better.

Not having hands or full legs presents many tough obstacles. And, like any obstacles that seem insurmountable, they can be shattered. Some I overcame naturally: I learned to write, play and draw by watching my friends. Others I had help with before I could help myself: my dad built me parallel bars and my mom encouraged me to use them to practice walking upright. Other obstacles, I stared at head on and came up with solutions: learning to dress myself when I was 13, becoming an early riser in my mid twenties, and the more recent realisation that what others think about me, doesn’t matter.

I love not having arms and legs, and I love myself (maybe too much – ask anyone who knows me!). I love the things I can do. And, I love the things I can’t do, yet.

You should love yourself too. No matter what circumstances you find yourself in, you have the ability to surprise yourself.

Sometimes I wonder whether or not I have an effect when I visit schools, or speak to audiences. My partner, Dalia, and I were watching a show at the Vancouver Centre for the Performing Arts, and at intermission a couple I didn’t recognise, approached us. One of them was a teacher at a local school I had presented at; she told me that the students were organising a sports day – several months after I had presented – and they insisted that Boccia be included in the program. An outdoor version was included, and was a great success bringing students of all abilities and backgrounds together in friendly competition.

Sometimes I surprise myself.

At a recent corporate presentation, the nicest lady approached me afterwards in tears and told me that my message had affected her in a very personal way. Neither of us could find the words to express ourselves further, so we hugged and smiled and cried.

Sometimes I really surprise myself.

Don’t Rush To Christmas

2010-11-22T18:34:00.000-08:00

I am very happy to be able to offer our lovely readers a blog post from Rich Fabend, who's words have been very much missed over this time. As always, Rich is offering some of the most amazing stories and has shared them with our avid readers. I really enjoyed his piece below, it seems perfect for the time of the year and is really quite an amazing read! Please enjoy!

Rich Fabend

Before sending this blog to DisCo I went to Wikipedia and looked up holidays in Australia. I was quite surprised to find out there was no holiday similar to Thanksgiving which is celebrated in the United States as well as Canada. In the States Thanksgiving is celebrated on the third Thursday in November while in Canada it's celebrated on October 12. This could just be a lack of knowledge on my part and I think what I've written here can be appreciated by anyone without it having to be a special day.

Before Halloween my wife informed me that stores were already beginning to display Christmas items. We have yet to celebrate Thanksgiving and the majority of the advertisements on television are related to Christmas. I believe retailers are rushing us to Christmas to increase their chances to make a profit. I feel very strongly that the Thanksgiving holiday gives us an opportunity to realise how fortunate we really are. I tell people from the minute I had struck the bottom underwater I am one of the luckiest people in the world.

Travis Roy has said "There are times in our lives when we choose our challenges and other times when challenges simply choose us. It is what we do in the face of those challenges that defines who we are, and more importantly, who we can and will become." Years ago a psychiatrist asked me to identify as many positive things, as I could, that resulted from my accident. After a great deal of thought the only thing I could come up with was that I had met some wonderful people. As I think about the question today I realised that there are many things that I really do have to be thankful for. I have been given a second chance at life. (I had no pulse when I was brought on the beach). Marge, my wife of 46 years, and family have stood by me every step of the way. Everyday Marge goes out of her way to help me enjoy quality of life. My nurses are always willing to go the extra mile. I have many friends who give their time to help me do the activities I love. I have surprisingly good health. I have learned more about human nature and the power that exists within the human mind. I have wonderful memories that I am able to revisit. I have been able to continue being an educator and, I hope, help others to deal with the challenges they face. The kindness that is in others has become very evident to me. When we watch the news we often are led to believe that there is much evil in society in general but I know that is not true. Finally, even though I am in a chair I have much freedom and opportunity. So, don’t allow yourself to be rushed to Christmas without stopping to realise what you have to be thankful for.

Check out this video from a woman who is an inspiration to us all!!!!

2010-11-01T20:53:00.000-07:00

I'm attending the Sydney Bloggers Festival 2010 - come and say hi!

2010-10-31T19:54:00.000-07:00

Inspirational man of vision!

2010-10-31T18:27:00.000-07:00

I have recently come across an article in Links Magazine written by Carla Caruso, which provides a profile of a very inspirational man, Duncan Meerding.

Duncan is legally blind but has not let that hold him back from reaching big and wonderful things! Duncan has become a crafstma, using his touch and hearing to create amazing pieces of furniture. His pieces are inspired by curved lines and surfaces that are based on the wonderful shapes and appearances of nature! The Syney Morning Herald wrote in an article on Duncan, that "The 23-year-old describes his design as a form of artistic expression to explain how he sees the world now: minimalist objects with flowing lines".

Since beginning to lose his vision at the age of 18 due to the degenerative eye condition, Leber's hereditary optic, Duncan has moved beyond the challenges of what were the simplest things in life, to be able to inspire others through amazing and unique furniture designs.

I would highly suggest that you check out the article on him from either Links Magazine of the Sydney Morning Herald, I think that this wonderful story should really tell people that anything is possible if you put your mind to it!

Have a beautiful day,

Alyssa

Emma Crees featured in Disability Now

2010-10-26T17:22:00.000-07:00

Our WONDERFUL blog contributor/writer Emma Crees has had an article featured in the Disability Now magazine and website. We are very excited for her wonderful work as a writer and feel glad that people are beginning to realise her great talents in the public world.

Hopefully we will be able to share many more of her inspirational words with you all! Please visit her lovely article titled 'People Say The Strangest Things'.

Diana Palmer Speaking at the Access Tourism NZ conference

2010-10-12T22:20:00.000-07:00

Our wonderful Managing Director, Diana Palmer, spoke at the recent Access Tourism NZ Conference on the 4th of October 2010. As our organisation is branching out into the Accessible Tourism Industry this was a very interesting Conference for us to take part in.

We pride ourselves on our ability to find the information needed for people to have accessible holidays, in terms of accommodation, travel, equipment, resources and services, etc. Please check out the video of the speakers below. Well done to Diana for your great work!