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What do carers need? Don’t ask – you might be told

Is it just Australia that is unbelievably backward at coming to terms with people with disabilities and the family members who care for them?

Or do other countries assume you are not capable of identifying what can be done to improve the lives of family members with disabilities? As if your 24/7 experience doesn’t quite cut it in the search for evidence of what carers need?

The Australian Government and NGOs like to call us “carers” – most of us just refer to ourselves as mums, dads, grandparents, children etc.

Anyway, whatever they want to call us, the newish Australian Government has yet another Inquiry into carers underway. They were a bit shocked at the number of individual submissions they received (1600 + I’ve heard).

And now there is an online forum for those of us who want to take every opportunity to tell it like it is. It’s called Carers Virtual 2020.

Some of the comments on Carers 2020 are heart-rending in their eloquent description of what life is really like.

Other posts and comments have kept me giggling for a few days, although their analyses of what needs to happen are bitingly accurate.

And some aim to turn the whole disability/caring paradigm inside out and make it work by investing in people with disabilities and the families who support them.

You might be amazed to know that people caring for family members with disablity:

  • Want control over their lives
  • Are disgusted that they have to beg for equipment from charities
  • Know how to help their adult children live fulfilling lives
  • Need targeted supports relevant to life cycle changes
  • Expect investment in their children with disabilties while young to maximise their opportunity for full social and economic participation in adult life

In short, this inquiry – like every other carer inquiry – spells it out plain and simple that “carers” want the service providers, academic researchers, brokers, advocates, government agencies and everyone else making a living from Australia’s burgeoning “disability industry” to stop. Listen. Learn. And act based on what “carers” and the people they care for tell them is needed.

Too easy.  But I wonder if anything will change?

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By Terrible Palsy.  Cross posted at terriblepalsy.

In our local paper there is a column called “Chatroom”.  It seems its purpose is for people to send SMS messages and they get published, kinda like letters to the editor without the correct spelling.

I don’t often read the column because I get a bit shocked as to the aggression and rudeness of the messages.  Lately, they have been all type of abusive messages about disabled and parents with prams car spaces.  Like this:-

All the sooking about the pram spaces.  What about the disabled spaces.  How many do they need.  A lot more mums go shopping each day than disabled people.”


To P..d off mum.  You would not have to struggle with babies etc etc if you stayed where you belong.  Chained to the kitchen sink.  So instead of moaning about parking as you flutter from dress shop to cafe to shoe shop, do something productive and iron your hubby’s socks and hankies.”

Makes me feel so safe and secure about the world Moo is growing up in.  Is it just me or are people getting less and less empathetic?

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Stop bugging me!

By Jodie

A quick, hassle free trip to the supermarket is usually impossible when you have children.  One of my children has a physical disability and is unable to walk.  Getting a park in a accessible parking spot is supposed to make it a little easier for me.  It also has the potential to completely ruin my shopping experience, as I found yesterday, yet again.


As I pulled into my parking space, I noticed the woman in the car next to me staring.  Instinctively, I checked if she had a parking permit.  She had one.  As I got out of my car she wound her window down and abruptly said “You do realise that you are in a disabled parking spot, don’t you?”.  I was instantly annoyed.  I snapped back, “Yes.  I do have a permit.  I have a child with a disability in the car.”


I was so mad I was shaking.  Why did I have to explain myself to her?  This woman still didn’t look satisfied with my response and said “Oh, alright”, then drove off.


What made me angrier was that I see this woman often.  The only reason that she didn’t recognise me, was that she is always too busy staring at my child.


This is not the first time that I have been questioned for parking in a accessible parking space.  I can understand that these people are driven by frustration.  I am sometimes inconvenienced by people without permits parking in these parking spaces too.  I do understand their intentions.  However, they should check first to see if I hold a permit.    Then, once they see that I do have one they should leave it at that.


I once had an elderley gentleman ask me if I had borrowed the car.  I did not have the energy to explain so I just said “No, it’s mine.”  I then smiled at him, got into my car and drove off.


I also have, on two separate occasions, had elderley women question my reason for holding the permit after I told them that I had one.  They didn’t see me struggle as I transferred my child into the car.  They always challenge me before they have all of the facts.


My explanation for this behaviour is ignorance.  They only see their own struggles.  My child’s disability is not what gets me down, it is attitudes and behaviours like these.


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Sticks and stones

By Jfinn08

This incident, that happened to my husband and children weeks ago, still has me furious.

My husband took the kids to our local playground on a Sunday afternoon to spend some time with them and to give me a break.  My son was off exploring the variety of play equipment the playground has to offer and my husband was pushing my daughter on the Liberty Swing.  My daughter has CP and cannot sit without support so this swing is her only means of enjoyment at this playground.  She just loves this swing.  A group of boys started to gather around the swing and stare.  They weren’t content with playing on the playground nor did they think to leave my daughter to enjoy this time with her father.  My husband politely gestured for them to move along but his request was ignored.  Instead, one of the boys called out to others to “Come and watch the show”.  He then turned to the growing audience and said “She’s demented”.  Well,  my husband then, not so politely yelled at them to go away (of course not his exact words).  This finally sent them on their way….running.  Another thing that amazed me,  was that all of these children had parents nearby who chose to ignore their behaviour, until they heard my husband shout at them. 

So, instead of my family returning home with smiles on their faces, they arrived home upset.  My husband was so furious that he wanted to punch the boy’s father, who he blamed for the incident.  My son said “It hurt me too that they stared and said things about my sister”.  My daughter cannot talk so she couldn’t tell me how she felt, but her eyes told me.

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