Wednesday, 13 August 2008

Oh the battle over who gets what!

I originally posted this comment on under

August 08, 2008 - 20:10
Subject: People with Disabilities themselves are invisible

I put it here as it took a lot of effort and I want it to be read more widely...

Well I will wade in with my boots on. I am an adult with a physical disability and am quite frankly totally sick to death of the Government's focus on Carers. First let me say that I know many carers and they are (overall) misused and abused, chewed up, exploited until they are at their wits end and then spat out. They work long hours supporting their children as all parents do with much extra. Many carers support adults with a disability too, Many, many and often until they hit the grave with little respite. Carers must be supported!

However in Australia at the moment the Government listens and responds to carers before they respond to PwD. Why? Because carers are a damn cheap labour source who are stuck and the Gov needs them to stay stuck so that Gov can save billions of $ every year.

All this does is deny the world a whole bunch of useful tax paying citizens - both the carers and the people they support. While we (PwD) don't get the support we need we can never get a good education, mobility aids, jobs etc. While parents/carers are worn out they may find it difficult to help their child grow to their fullest extent.

If the Government supported PEOPLE WITH DISABILITIES THEMSELVES properly and fully then no one would have to be a carer in the present sense of the word. Parents of children with disabilities would just be able to be Mum and Dad as their disabled child would have their needs met in the same way as non-disabled children do. Carers of adults with disabilities would be able to return to their primary role of mum, dad, brother, sister, friend to that adult.

You may be crying "idealist" and scoffing. Maybe I am but I will always seek the ideal otherwise I might as well just wheel off the top of a tall building.

Don't we all want equity which includes everyday needs being met? YES! Then lets chop the umbilical cord properly and let kids and adults with disability run free to be normally interdependent.

PwD and carers must work together on this. This is not happening at the moment. While carers keep speaking FOR all of us, both adults and children, we are pushed into the background and seen as only burdens without a voice. All children’s parents speak for them and that is as it should be regardless of disability. We must stand alongside each other and shout together. Imagine the strength and numbers in that!

The general public loves to go "oooh aren't you wonderful" to carers and "you are a saint". When the Gen Public do this they absolve themselves of any responsibility for the disadvantaged in society. They believe that everyone has a carer and everyone is fine. The PwD, as they have a carer and the carer as they can manage as they are superhuman (saint).

I for one don't have a carer, live on my own and receive minimal support thru Gov. That makes me invisible.

Remember the hoo ha over the suggested cuts to carer and aged Bonuses. Huge to do over it. All the carers and aged shouted bloody blue murder. I didn't hear one of them say "but hang on, what about people with disabilities THEMSELVES getting a bonus?" Not a peep.

As a person who lives solely on the Disability Support Pension DSP I have NEVER received a bonus let alone having it taken away. I live on exactly the same amount of pension as a person on the aged pension. But no bonus!! How is that so?

I feel like I don't exist in my own right. I have the same expenses as anyone else but with additional costs of disability and without the opportunity to gain a house, car and other assets that the aged have had over their lifetime. But no Bonus!

PwD are ignored and shoved aside, done to and around. I believe we are still seen as "useless eaters" and just must be looked after in the cheapest possible way. Despite all the rhetoric about equality, value and inclusion. It's all words, only words.

We don't need more studies on how to assist carers or PwD. It's been done to death. JUST DO IT I say. Spend the money and Gov and All will save in the long run. Less pensions, more working taxpaying PwDs, healthier happier PwD, carers back in the workforce paying tax and the multitude of talents that Pwd have will be accessed by the whole of society.

I am the president of a large PwD organisation and we shout loud and hard. We have over the bonus but they just ignore us. There is a review into Carer and Aged pensions going on - oh and they added we PwD in later. Woo hoo gee thanks!!

There is an organisation that represents all people with disabilities called the Australian Federation of Disability Organisations (AFDO). The Carers association should be working with AFDO. Hand in hand, side by side cos we are all being neglected, ignored and totally patronised by the Gov and society.

I have tried through a State disability organisation to work together with carers but have been fobbed off many times. I find that carers sometimes find an articulate PwD a bit hard to handle. I believe that they think I will not consider the needs of their child who may not be articulate. Such distrust. People with disabilities are the experts on disability and all adults with a disability should be empowered as such. Children with disabilities must be enabled and empowered by their parents and their adult peers with disabilities.

The Carer 2020 forum talks about "models". PAH. Let's just enable people - whatever it takes. We only need bloody "models" when someone is pulling the purse strings tight. Do non-disabled kids have models cooked up for them about how they must live? No. They just live.

Let people with disabilities live too. Let carers stop being carers and return to just live their original role of parent etc.

cheers and written in good spirit towards carers



  1. So very true. I wrote a similar post today.

  2. You're so right Glee. "Carers" and people with disability should belong to the same union. My role as mother (not carer) of a kid with a disability is advocate and enabler, initially for him and now with him, eventually he'll do it himself. For me the key, big, mega, major change needed is attitude - that disability is just diversity and targeted investment in people with disability (and without disability) will make society a better functioning place. Simple and logical. Almost elegant in its simplicity!

    Why is that message so hard to get through to just about everyone? Let's see what happens with the info on Carers2020 ...

  3. Glee
    Thank you for posting this on Carers2020 it was valid, relevant and needed.

    I loathe being referred to as a 'carer'. I am simply a Mum of a little boy with additional (albeit significant) needs.

    He deserves a life where he is invested in as a valued member of society, not seen as a “warehousing cost” with no potential to contribute to society.

    If we invest, recognise and respect the PwD then the side effect will be an ease in the so called 'carer burden'.

    Thank you for being a valid voice for my little boy.

  4. I'm a PwD who is a carer. I don't think I will ever be able to recover.. I'm always caring. 13 years later and all I've achieved is that she's in one piece and I am fat. (lolcry)