Wednesday, May 30, 2012

Better Than $ $ $ Peer Support

Thanks to John for his latest post you can see his blog here:

Do we underestimate the power of “Peer Support” or do these words confuse things little?
At the end of the day, aren’t we just “giving someone hand”?
Today whilst supporting a friend in the Law Courts for their first time I was basically “giving them a hand” which also made me think, this is  just another angle of “Peer Support”
The Department of Human Services (Vic) in collaboration with a group of individuals, family members and professionals who pulled together their thoughts on Peer Support & have recently launched a resource called:

Disability Services Peer Support

Which will soon be available in all good bookshops, (actually it will be on the website soon)
From the introduction of the booklet.
………is for people with a disability and their supporters.
It tells the story of how people who receive disability supports can share what they know about self-directing their supports………
My takeaway after reading this booklet is, I like how it dissects the different shapes and sizes of peer support such as
  • Having a chat in the car park
  • Support Groups
  • Individual Peer Coaches
  • Online options, if you really think about it Facebook could possibly be seen as a form of peer support? Sort of
Put a note in your calendar to check out The Human Resources website early June to take a closer look yourself.

Thursday, May 17, 2012

Living Within Your Means

So is the National Disability Insurance Scheme (NDIS) turning into a political bun fight? At the moment it seems it is, and the politicians on both sides of politics seem to be intent on winning brownie points by slagging the others off, rather than focusing on the real issue at hand - basic human rights for every Australian.

Opposition Treasury spokesman Joe Hockey has come out and said yesterday about the NDIS "I will not make a commitment to something I can't fund."

He then went on to say:

“you've got to live within your means and the government is engaged in a cruel hoax in saying that it's getting on with the job of the NDIS and then underfunding it".

Only seeing the dollars

You know Mr Hockey there are just some things that take priority over a monetary value. Surely people with disability being able to live a life where they are not treated as second class citizens is one of those things. I wonder how Mr Hockey might get by on 2-3 showers a week, or having to wait a couple of years for a new wheelchair? We’ll probably never know.

Here’s a challenge - Perhaps Mr Hockey could spend a week living with a person with disability and see how well they are currently ‘living within their means’.  Having to ‘get by’ and accept what they are given, which ain’t much! Politicians are elected by the people right? Then surely they should get down and understand the situations of these very people who elect them. 

Perhaps spending some real time with people with disability might provide Mr Hockey with some insight and go a little way in changing his thinking. Surely this should be a matter of ‘how?’ do we fund this Scheme not can we?

Don’t just be a naysayer and put it in the ‘too hard basket’Joe.

Wouldn’t it be refreshing to hear a re-phrase of Mr Hockey’s comments yesterday perhaps to sound something like this:

‘I can’t make a commitment to how this scheme will be funded yet, but it’s such an important issue, that we will find a way to fund it. 

Now this isn’t about which party you vote for – it’s about making sure whoever you vote for is constantly reminded that people with disability have the right to be treated as equally as any other member of our society.

Let’s see if we can change Joe’s mind.

Monday, May 14, 2012

Rubbing the tummy of the person with disability

Thanks to Joanna for her latest post about 'helpful' wheelchair comments ;) ....

This won’t be much of a post given how much I could say.

I was out with a good girlfriend musician who after a child-bearing hiatus is thinking of going back to performance. We talked a little of fame after going to Adriano Zumbo’s bakery and talking to the man himself who has been on tv here in recent years. My girlfriend went all starstruck and girly which was lovely to see. One of the topics we talked of was being on public display, something I know a bit about.

One of the things I have noticed again of late is the fact that I seem to be or feel I need to be always ready to be on public display. It’s not fame or even notoriety for anything more notable than I get around in a wheelchair.

The basis for the attention ranges from nosiness such as these comments to me in the last week from grownups I met for the first time on the train system.
  • “How does the chair work?”
  • "When do you charge it?
  •  "I think you’re rear tyre is falling off.” (it wasn’t and no he wasn’t trying to be helpful)
  • "you need a pouch on the side of the chair like this (gestures with hands)”
  • “Can you sleep in a normal umm bed?”
It goes from the benign to the ridiculous. From nosy (above) to rude and curious or companionable (“I have a friend/sister/third cousin 6 times removed who broke her legs, so I know what its like”, “Do you know a guy named Bill (since you both are like that)?)

I feel I have a responsibility to be the most generous positive version of myself I can be. For all sorts of reasons. One of these reasons is the sense that I want to give the public especially children a positive experience of disability, if I am the first part of their education in that area. Sometimes that onus gets a wee bit too heavy, but it’s a hard one to shake.
Children of a particular height/age can be very funny; trying to work out how I’m moving myself, or why my “pram” is so different or why I’m such a big baby. I usually try to smile and say hello if I’m close enough. I do try hard not to laugh too hard when the child is staring so hard they walk into a wall (on more than occasion). I’m a little impressed when a restless or upset child can be suddenly quieted merely by being dumbfounded at the sight of me rolling about doing my business.

The attention is by no means constant; at least the comments and the wish to stroke my hair or pat me aren’t. The readiness must be. Especially when I don’t have a normal looking person with me it seems.

By the way, as someone who doesn’t like macaroons the one’s at Adriano’s were sublime. Go there! There’s even a ramp!

Monday, May 7, 2012

Wheelchair Etiquette

 . . . or How to Win Friends and Influence People on wheels
by Bruce Mumford

Acceptance and facilities for wheelchairs have improved quite a bit over recent years (with still quite a way to go, of course), but we wheelchair users need to remember that we have responsibilities too.

You might find it weird and sometimes annoying to see all these people flitting about willfully on two legs when you can’t even get up out of a chair- but remember they see you as a bit different. And there’s more of them.

So here’s some tips that may make it easier for people to relate to us when we’re out in public: and like it or not, when you’re in a wheelchair you’re on display.

That’s relatively easy for me because I used to be a performer and a Drama teacher.  I’ve grown used to the fear of going on stage and having to cope with tremendous stuff-ups in public.  But even if you don’t have that background, I think you’ll find things a lot more pleasant if you use a few of these skills.  They’re not actually that hard to do either.

But before we start and you begin thinking that I’m being a bit holier-than-thou, let me point out that they come mainly from experience.  I’ve made every one of these mistakes and a lot more.  Do I now follow my own advice? Only occasionally.

Because, as my wife will testify, my memory rarely has a direct relationship with my great thoughts of 5 minutes ago!

How we look when going out is very important.  I know all too well how difficult and time-consuming  it can be to get dressed in ‘normal’ clothes with buttons, belts, zippers and studs etc, but there are shortcuts (Velcro is a wonderful invention) and sometimes the timely organization of carers before leaving home can be as good as having your own dresser and make-up artist.   Cleanliness as well as presentation is important so don’t forget to make use of your wheelchair- height mirror.  These comments apply to the looks of your chair as well as yourself.  I’d be wary of too many stickers and attachments, apart from a safety flag.  If you go out looking like a bit of a weirdo, expect to be treated like one!

 Figure 1: It might be comfortable- but not a good look for going out

 Figure 2: Bruce and Alex Traill of SPCIA attending the local Access Committee in more formal attire

Be pleasant to people you meet.  We’ve got a bit of a reputation for being grumpy and surly curmudgeons.  I’m sure part of this comes from the fact that a great deal of the conversation directed our way we’ve already heard a couple of thousand times before ; such as, “gee you’re looking we1l”  ”aren’t you lucky to have a chair to sit in whenever you want”, ”how’d you get like that?”,“ wow, you can really move in that thing”, “you’re so brave/clever/talented” ,”have you thought of trying this miracle cure/charm/religious cult/herb/drug/exercise/investment opportunity?”.   I could go on . . . and on.

People often assume that because we are in a wheelchair we must be mentally disabled as well and because they have to talk down to us they should speak to us like children.  To deal with this, my mother suggests letting them get to 5 silly comments and then to run them down- but wouldn’t suggest this approach myself.  What about focusing on their face and trying to link them to a movie character you know?  Next time you meet them in the street and think of Yoda you’re much more likely to smile than grimace.  And a lot of people you’ve never met will stare and then smile at you as they pass.  Just smile back knowing that if they did that to an able-bodied person they’d probably be taken in for questioning.

Be clear in asking for the help you need /don’t need.  As a friend put it “most people mean well; they just don’t know how they should help”.  If you don’t want any help, let people know early to save embarrassment later.  If you do need it, be specific.  Nearly everyone will be only too happy to help. (in fact I think being in a wheelchair is a great way to find out just how good most people are).

Be appreciative and grateful for the help people give us.  Be patient and accept their generosity graciously.  Don’t expect it or take it for granted.  We may need their help again sooner than we think!

Watch where you’re going.  Electric wheelchairs can be dangerous things.  Be aware of the dimensions, turning circle, responsiveness of your chair.  Try to drive in a predictable and direct path to the left of passing pedestrians, without changing direction too suddenly or going too fast.  People can have a nasty habit of swiftly striding out of shop doorways or heedlessly hopping from cars without expecting to bump into a wildly whizzing wheelchair.  When backing up always look behind you first (if turning your head’s out, a rear vision mirror is essential).  You don’t expect people to fall over you and most people don’t expect you to run over their toes.

 Figure 3:  Blocking an entrance while having a chat

 Figure 4: A better way to do it!
Make people aware of your presence.  Especially in crowded shopping centres or streets a flag is a good idea and so is regularly tooting your (invariably silly) horn or calling out to let people know of your presence, so they don’t back into you or come to a sudden stop ; that is, unless lap-dancing with strangers is your fetish.

Take care not only of people, but of their furniture, floors, walls and water-features.  Wheelchairs are much more damaging than people, as our house has found out to its cost.  I’ve caused more damage to the architraves, kick-boards and doors to our beautiful old house in the past ten years than several generations of families have done in the 140 years before!  Remember how you resented people not wiping their feet or being careless in your home?  I’ve also found it’s just not worth taking risks.  Both our bodies and our mobility devices are too costly to repair.  Be very careful with holes/bumps/gradients and in particular gutter lips.
Be careful where you stop to chat to people or look at things. In the middle of doorways/footpaths/roads are definitely places to avoid.  If it looks like you’ll be getting into a longer conversation with someone, see if you can find a convenient place where they can sit down and be at your level.  That way you’ll both feel more comfortable.

 Figure 5  "Why do you always stop in doorways!?"
In conclusion, we need to ask ourselves what we want when we are out on our wheelchairs or scooters.  Surely it’s to be treated as fellow human beings and to be helped when we need it.  To achieve this we need to be able to put others at ease, so that they are able to relate with us and are willing to help.  Perhaps we need to think a bit more sometimes about treating others the way we would like to be treated ourselves.

 Figure 6 The rest of the family don't appreciate me watching TV this way.

It’s beginning to sound like I’m thinking of developing a new Accessible Religion.  But lest I seem a bit like some fundamentalist hypocrite  I’d better stop absent-mindedly repeating a lot of those mistakes in my chair.  Both my body and my wheelchair’s damages attest to them a bit too clearly . . .

To get ideas for this article I’ve drawn information not only from my own mistakes, but also from a wide section of the able-bodied populace including family, friends, carers and health professionals, community transport drivers, accommodation providers and our local council’s Aging and Disability Officer.
Thanks to you all.


Thursday, May 3, 2012

NDIS - A Basic Human Right

So you’ve probably heard a bit this week about the National Disability Insurance Scheme (or NDIS for short).

On Monday thousands of people around the country joined forces and attended rallies in Sydney, Melbourne, Perth, Adelaide, Hobart and Brisbane – all making the point of ‘Every Australian Counts’. This has been a campaign running for over 18 months now calling on the Government to overhaul the current disability system.

So what happened? Well Prime Minister Gillard announced at the Sydney rally that Australia will definitely have a National Disability Insurance Scheme (NDIS).  “Today I can announce that in the May Budget, my Government, your Labor Government will fund our share for the launch of the National Disability Insurance Scheme” she said.

PM Gillard also announced the Government will deliver the roll out of this scheme a year ahead of schedule and the scheme will start to roll out next year in 4 locations (these haven’t been named yet). 

The Government’s media release states this initial roll out will see about 10,000 people with disability start to receive support under the new system. Read the media release here

So what now? It may seem like we have ‘won’ and in many ways it is a big potential win for all those people who have literally suffered and continue to suffer under a system that just doesn’t work.

However, now is not the time for us to take our foot off the pedal, especially if you think about some of the comments made by Opposition Leader Tony Abbott not too long ago at the National Press Club in February. His sentiments were that the NDIS was only a priority if the budget was in surplus.
More recently this week he has pledged bi-partisan support for the NDIS, however there are still questions being raised from within his own cabinet (Shadow Treasurer Joe Hockey) around how the NDIS might be paid for.  He says Australian families will find it really hard to pay for an NDIS.

Really? Are we still trying to win political points over an issue that boils down to people with disability in this country having their basic human rights denied?

The Every Australian Counts campaign has recently changed to a harder hitting message asking such questions as ‘Which country expects a child to wait more than 2 years for a wheelchair?’ or ‘Which country expects someone to live with only 2 showers a week?’. The answer of course is our country – Australia. The supposedly lucky country – well it seems only lucky for some. 

Perhaps Joe Hockey might like to hit the streets and ask ‘Australian families’ how hard it might be to refuse giving a dollar or two to a kid who has outgrown their wheelchair.  Or refusing a dollar or two to the countless other desperate situations people with disability and their families face each and every day of their lives. Surely as Australians we can’t be that selfish, give us more credit Joe.

So do we really care how we pay for the NDIS? Some things shouldn’t have a price tag - surely basic human rights are one of these things.

Check out the continuing campaign at