Carers: Step off and let people with disabilities speak

Angry Cripple says:

07:15am | 12/04/11

Oh Erick! You posted! My life is complete.

Slick says:

12:14pm | 12/04/11

Malohi,
“Your voice has as much wieght as an individual road user has in upgrading traffic infrastructure. Unfortunate but true.”

I think that is the problem. The people who use these things often do have the best ideas. A patient has first hand knowledge of how well the system is working and where it is failing. A customer knows if the product is worth buying, or any issues with it.
No I am not saying that they should come up with everything, but imagine how much could be achived that was actually useful if people would listen to those with experience, not just a degree in something that may or may not have anything to do with the problem.
Jo Blow has the ideas, the person with the relative qualifications then takes the ideas and finds ways to implement them.
Currently, someone without experence, or even qualifications says something, spends $100mil and then realise that it was a big screw up, try again later.
I think that way is not working.

Dee says:

04:33pm | 12/04/11

Oh malohi, what an awful perspective you’ve taken.

First of all, likening people with disabilities to road users and infrastructure? That’s awfully disparate. I’m trying to figure out why you couldn’t use a more compatible analogy, such as when single or several cases pointing to issues in the healthcare system have led to major changes. Maybe because it wouldn’t fit your view.

Secondly, I’m wondering what you are comparing a carer’s opinion to. An engineers? Get real.

Although I agree with further comments that there shouldn’t be an ‘us or them’ approach to disability reform, people with disabilities are just as valid stakeholders in feedback on the NDIS as the carers. 

Thirdly, making a personal gibe at Todd’s career choice lends nothing to your argument. From one who talks about ‘appealing to emotion’ as a persuasive tool, you’re doing a bit of manipulation yourself.

malohi says:

07:55pm | 12/04/11

@Dee
I was pointing out that out of the three ground he stated he was shunned he neglegted to expand on perhaps the most important.
I infer from the AC’s comments and his own that he has quite a good idea of the processes involved and I would like to hear his plan, rather than “don’t listen to her, she is not even disabled, listen to me”

The analogy was apt. Todd has no greater say than any other casual user of a government services and will be attributed no kudos for that fact alone, I am sure the gov knows all too well the problems. If however he draws on that experience and comes up with solutions for effective change, I suggest his arguement would be more weighty- however this would involve knowing “the processes involved.”
This was not addressed.
As for the adhominum. I never claimed to be above striking down such self styled titles when I see them… sue me, I tried to attack the arguement as well.
It is the same prob as AC, all rage no solutions. I know that the system sucks and should be changed relating to the disabled. I am just waiting to hear the solutions. You have raised awarenes and have my support. step one done.. now for the substance please…

Sam Mauchline says:

08:24pm | 19/04/11

Hi I am in my seventies and the father of Paul aged 40 who suffers from cerabral palsy an requires 24 hour care. I have also been a constant critic of the NDIS this led to NDIS QLD refusing my offer of assistance. My wife and I have been constantly saying that our age we find the implementation time for the NDIS to be totaly unacceptable we are howled down. At the NDIS meeting on the Gold Coast we tried to taqlk about these subjects but they just said that waht they wanted was for all present to go away and ask family members, friends etc that we must have an NDIS but did not specify which NDIS. To us this meant thier NDIS as nothing else mattered. Also at these meetings, orgnaisations/service providers vastly outnumbered parents, looks like they are trying to hijack this whole process. Something we find very disturbing.

Chris L says:

09:49pm | 12/04/11

And thank goodness you do, deb. I regard cleaners as an essential service and am greatful every time I visit the loo.

Angry Cripple says:

08:43am | 12/04/11

I have made many open calls for columns, and got no response, other than from Todd, who then did not provide one, presumably because I said there was a chance it might not run/be edited. I think it takes a while for people to gather the courage/thoughts etc to contribute a column, but Sue, already being a journalist, was quick off the mark. Her second column was very topical, which is why it bumped the column from Carl Thompson, a young man who has a disability - his column is running tomorrow, ASAIK.
Caro? Do I know you? Do you know me? How did you know columns hadn’t been submitted?

caro says:

10:03am | 12/04/11

I don’t know whether columns have or haven’t been submitted AC - I was just going by Todd’s comment that “not one person with a disability has contributed to a guest column”, by which I took to mean “submitted”. Don’t tell us you have hundreds of contributions from pwd that you’ve thrown in your waste paper bin AC!

Zaf says:

10:24am | 12/04/11

[what does it matter whether the Angry Cripple is a cripple, or a non-cripple, or a three-headed green Martian for that matter? It’s the CONTENT of what AC writes that matters, nothing else]

A man whose spent his life taking care of a woman may still not be able to write feminism from the inside.

Kate says:

11:12am | 12/04/11

Thank you Caro, carers do have a right, as do the disabled persons being cared for… this is NOT an ‘us or them’ situation.

Kate says:

11:12am | 12/04/11

Thank you Caro, carers do have a right, as do the disabled persons being cared for… this is NOT an ‘us or them’ situation.

CM says:

01:39pm | 12/04/11

Good response Caro,  don’t think I could have said it better.

VickiPS says:

12:23pm | 12/04/11

Faye, you’ve gone to the heart of one of the big issues in disability which is rarely considered explicitly.  ‘Disability’ isn’t a homogeneous concept any more than people with a disability are a homogeneous group.  As you’ve said, when it comes to looking at specific needs and wants, models and mechanisms of service delivery, and especially consultation and representation, people with intellectual disability have very little community of interest with those who have sensory or mobility impairments.
Speaking from the point of view of a service provider, even the best-intentioned of us are well aware that we are blundering around in a morass of contradictory roles and expectations.  No-one involved, except perhaps for the person with a disability, has a disinterested position as advocate.  The tensions afflicting a service provider’s position are obvious, but equally not all families are able or inclined to separate their own interests from their relative’s (even supposing that they should).  Self-advocacy by people with an intellectual disability tends even at its most effective to be limited in scope, and often is little more than tokenism. 
Speaking as the parent of an adult with a psychiatric disability, I often find myself in the position of having to advocate on my daughter’s behalf (at her request).  At those times, I become the kind of parent that, in my service provider role, I resented and hated to deal with!  I become insistent, vocal, persistent and somewhat ruthless.  (I still feel for the service manager who had to deal with a Ministerial on Christmas Eve).  And that, I believe, is as it should be.

Todd Winther says:

03:07pm | 12/04/11

Just as a point of clarification, yes at the time I wrote the initial submission I was very much in support of an NDIS, but then I studied the ‘substance’ of what an NDIS was about by attending a forum, doing my own research and speaking to members of the NDIS QLD committee and found that there was in fact no substance at all.

As been has pointed out in another comment I would encourage you to visit an article I wrote for RampUp http://www.abc.net.au/rampup/articles/2011/02/22/3145273.htm which explains why I have reversed my attitude on the NDIS.

Also, I am currently in the process of writing my submission to the PC inquiry that expands upon these arguments in greater depth.

Narelle Hughes says:

04:20pm | 12/04/11

Thanks for your reply Todd, and for the link which helps me understand your point of view a little.

While the detail of the NDIS may not be in place as yet, and I am concerned that Governments will try to ‘cherry pick’ the recommendations which suit them at the time, I believe we must campaign for the NDIS now, or it will never happen in any form.  We can argue about the detail later.  We need the government to realise that there are a lot of people (votes) who are expecting this to happen in full.

If we can get the ‘big picture’ accepted then the detail will happen.

Two examples I can think of to illustrate this:

The referendum to change from a constitutional monarchy to a republic.  By including detail in the referenda, the republic supporters were divided and the possibility of change was defeated.  A very clever ploy on the part of John Howard at the time.

John F Kennedy’s challenge in 1961 to send a man to the moon by the end of the decade.  There was no detail, just a challenge to the people of America.  We all know that the details on how, when and where came later, but by exciting the people and having their support for the big picture, the idea came to fruition.

I truly believe that we need all people with disabilities, those who care for people with disabilities, service providers, advocacy groups and the general public to embrace the ‘big picture’ idea of an NDIS and challenge our governments to implement it.  The detail can come after (and then we can argue over that). 

If we cannot agree among ourselves that change is needed the government will use our dissenting voices as an excuse to delay or do nothing.

george says:

07:04pm | 12/04/11

I applaud Narelle’s admonishment to us all - and her timely reminder of the fiasco that was the republic referendum. It takes so little to divide and conquer. Todd could well be the wedge needed. Point to the disunity within the sector - see they can’t even agree amongst themselves - are you sure they’re not paying you, Todd?

Crip-tastic and proud says:

11:24am | 12/04/11

Exactly. And I think that the Angry Cripple calling themselves the Angry Cripple is a problem if they do not have a disability. Regardless of whether or not the intention of the column was to give people with disabilities a voice, it isn’t.

I have a physical disability (and yes I do also advocate for those with intellectual disabilities), and I use the word cripple because I find it empowering. It’s sarcastic and strong, it defies those who try to beat me with the PC stick and it’s a word that I enjoy using to define myself and connect myself to others with a similar lived experience. Some, but by no means all, physically disabled people have claimed the word – and the abbreviation of it to ‘crip’ – as an act of defiance and as a political statement.

Identifying as crip is like identifying as queer. How often do we hear heterosexuals define themselves as queer? Never, because it’d be inappropriate to claim a minority status of a group to which you do not belong.

The rise of the disability rights movement changed the words that were used to refer to us profoundly.  Now, we can use them with pride and with power. So I can talk about crip power, crip pride, crip culture, crip literature. I use cripple and crip because they speak of my experience and ring true for me politically.

If the Angry Cripple is not a disabled person, then they have no right to claim the power of our word, in a context where we are still so lacking in a voice. Todd is right, the voice of the carer in the mainstream drowns us out, and the AC column is heading in the same direction.

Crip-tastic and proud says:

11:26am | 12/04/11

Exactly. And I think that the Angry Cripple calling themselves the Angry Cripple is a problem if they do not have a disability. Regardless of whether or not the intention of the column was to give people with disabilities a voice, it isn’t.

I have a physical disability (and yes I do also advocate for those with intellectual disabilities), and I use the word cripple because I find it empowering. It’s sarcastic and strong, it defies those who try to beat me with the PC stick and it’s a word that I enjoy using to define myself and connect myself to others with a similar lived experience. Some, but by no means all, physically disabled people have claimed the word – and the abbreviation of it to ‘crip’ – as an act of defiance and as a political statement.

Identifying as crip is like identifying as queer. How often do we hear heterosexuals define themselves as queer? Never, because it’d be inappropriate to claim a minority status of a group to which you do not belong.

The rise of the disability rights movement changed the words that were used to refer to us profoundly.  Now, we can use them with pride and with power. So I can talk about crip power, crip pride, crip culture, crip literature. I use cripple and crip because they speak of my experience and ring true for me politically.

If the Angry Cripple is not a disabled person, then they have no right to claim the power of our word, in a context where we are still so lacking in a voice. Todd is right, the voice of the carer in the mainstream drowns us out, and the AC column is heading in the same direction.

toms says:

11:40am | 12/04/11

bless me - you’ve just wiped out three quarters of the whole journalistic brotherhood in one fell statement. sports columns should be written by sportsmen and not sports journalists? columns on the war in iraq by soldiers and not those meddling war correspondents?

can we get back to talking about matters that affect people with disabilities rather than debating who is or isnt entitled to have an opinion and who is or isnt qualified to put pen to paper.

seriously its this sort of ridiculous division that has been behind the setbacks for the rights of people with disabilities.

btw - my intellectually disabled daughter is 10 years old so I reserve the right to speak on her behalf just as I grant you the right as an adult to speak up for yourself and be heard.

Faye says:

05:07pm | 12/04/11

So MM do you include parents who care for their child’s every need 24/7 as being ‘connected in some way to the disability sector?’ Would you really want to ban people who do not have a disability themselves from posting on AC? From your post it sounds like it. If so, you are in great danger of alienating the rest of society from giving a stuff about people with disabilities if you prefer to hear only the opinions of pwd themselves.

And at a time when we are trying to gather broad community support for more rights for pwd and better supports - what a ridiculously alienating idea!

sue o'reilly says:

01:23pm | 12/04/11

Trust you, TChong, to totally misinterpet last week’s column as being about “union-bashing”, when actually it was in fact about how best to protect highly vulnerable people with severe dependent disabilities from any mistreatment and abuse. You should try broadening your reading; like this heartbreaking post in response to last week’s column (one of many): 
“You are spot on. I work as a pro carer in resi care have done for 12years I love what I do and would not consider doing anything else but the industry I work in makes me sick to the pit of my stomach. I see abuse on a daily basis most of us are too sacared to complain because the industry functions on fear. I work with people on a daily basis who i wouldnt let look after my dog for the weekend as far as complaining I spend most my working day trying to get someone to listen but we get a new manager every 8months or so wasnt me last manager complaints go missing and the people who do care are bullied out of the industry and replaced with people of the street with a drivers licence and a willingness to obtain a first aid cert. keep fighting. there are carers out there who do care. well done and good job.”

And btw, 99.9% of us are all now fighting together for a larger share for pwd mate; but which “relavant” [sic] unions, besides the AMA, are currently assisting, would you happen to know?

caro says:

11:51am | 13/04/11

Still waiting for your guidance on the relavant (sic) unions you are sure would assist TChong….

Faye says:

01:26pm | 13/04/11

Umm, interested to know which unions would assist us TChong, they are deafeningly silent on any issue…other than defending the right of abusive/neglectful staff to maintain public sector employment in NSW and thus continue to neglect/abuse vulnerable people.

malohi says:

10:43am | 14/04/11

Trust you Sue, to attack the person not the argument.
I find it amizing that in a reply to an article which pans your own arguements simply because it was you that wrote them (not being crip)
You would pan Chongy’s arguments simply because he wrote them.

It is like some logical experiment straight out of alice in wonderland.

sue o'reilly says:

02:21pm | 14/04/11

Meanwhile, we’re all still waiting for information from Chongy as to the the “relavant” unions busting a gut to help us….

Angry Cripple says:

01:26pm | 12/04/11

Why wouldn’t I want you to write a column? I think you have some valid points.

sue o'reilly says:

02:41pm | 12/04/11

I have to get off this damn site and do some work! But before I go, I just want to say to Cat that I reckon she’s absolutely right. Everything she’s observed has been my experience over the past 21 years too.
It’s understandable - up to a point - that people assume that what is right and best for them must be right and best for everyone. I suppose we all do that to a certain extent. But in the disability field, you get a particularly toxic combination of grossly inadequate funding to start with, combined with (in no particular order) desperate parents pushing for their child’s category of disability to be preferenced when governments decide from time to time to throw around a few crumbs for therapy or whatever;  far too many people with disabilities completely unable to speak for themselves, and therefore going totally unheard and overlooked, most particularly people with intellectual disability; advocates who are very well-meaning but who drive pwd and carers mad by assuming they know best what people they have never even met “need” and/or “want”; a highly articulate minority of middle-class parents/pwd who know how to lobby, jump up and down and use the media and therefore get preference over often many needier people, again when govts decide to throw around a few crumbs; various loony ideologues and zealots demanding that everyone must do what they say, trampling over others’ rights to do things differently if they so wish; people like Senator Boyce (I assume you mean Boyce Cat?) getting up in the Senate and calling for the closure of all special schools to make herself sound “right on” - 10 years after most people in the world began to realise that special schools were actually better for some kids than mainstreaming; and way too much money wasted on programs lobbied for by minority vested interest groups.
And I fear that you’re right too Cat that it’s going to go on being this way, even if an NDIS is introduced, because that’s just how the world works, isn’t it? All the bureaucrats and salaried members of the disability industry will continue to enjoy their endless conferences in four-star hotels, while the weakest, most disadvantaged and vulnerable will continue to get it in the neck.
All very depressing really.

Cat says:

04:10pm | 12/04/11

Yes, sorry Boyce - was writing to a Bryce at the time. Ouch. I must proof read my comments.
Angry Cripple I have put in numerous submissions to inquiries over the years, backed up with professional research. Naturally it has all been ignored.The submission process is about writing what the government wants to hear so that you will get the money you want for the programme the government wants you have.

Angry Cripple says:

04:26pm | 12/04/11

Cat - I’d welcome a column that was a “letter to funders”. I’m not government. Nuh uh!

sue o'reilly says:

04:57pm | 12/04/11

Cat, I hope you don’t mind me saying this, but I think we might be soulmates. The submission process is exaclty, precisely, what you say it is. Fantastically accurate description! And it’s exactly the same with all the time and money-wasting charades govts go on with in other areas too, like the “consultation” process, which is all about bureaucrats tediously going through the motions of pretending to listen to the community’s views before doing what they were always going to do in the first place; and the Public Service “job application” process, which is all about appearing to genuinely advertise/interview etc etc, when in around 90% of cases, the person ultimately appointed has been selected before the first ads even appear. The waste of taxpayers’ money involved is incalculable. Not to mention the waste of so many people’s precious time and energy. But the bureaucrats don’t care. Politicians come and go, but the bureaucrats go on forever, shuffling paper back and forth, back and forth….

Faye says:

02:34pm | 12/04/11

I think Ronni has summed up the sentiments of parents across Australia, sick of being told to shut up and go away by arrogant self-righteous tools, absolutely perfectly!

caro says:

04:07pm | 12/04/11

Yes, I saw - “instantly”, as Todd would say - exactly how ridiculous this sounds. His sentence: “Instantly I saw the latest hypocrisy in this argument” is also very weird-sounding. Vaguely reminds me of something - maybe a line I once heard on Blackadder? And what on earth is “latent” hypocrisy? 
I reckon The Punch ran this column because Todd and his two or three supporters are such bullies. Making such a song and dance about pwd (ie Todd) never getting to guest write a column that the AC buckled under the pressure. On the other hand, though, it might be a devilishly cunning plot…. (again as Blackadder might say);  run this load of twaddle and destroy whatever vestige of credibility TW might have for the rest of recorded time? Weirdest of all though is Todd’s solemn advice to us all to read his upcoming response to the PC Report. I think he’s basking in this feeble ray of a public spotlight, and so lacks the slightest sense of any humour or irony, he doesn’t even realise how ridiculous he’s made himself look.

Sick of this debate says:

07:37pm | 12/04/11

The whole lot of you need to bloody grow up.

What a great demonstration of unity you have shown to the politicians and decision makers who are no doubt reading this column and wondering what the hell they’ve gotten themselves into.

Nasty little comments and point scoring might make for your personal jollies but it makes for sickening reading material.  The carers can’t see that the pwd are talking about lived experience and that their lived experience is different from that of the carers’ voiceless children.  The carers can’t see that the rights that the pwd are fighting for are important to their dignity and their lives and their self worth.  The pwd can’t see that the carers feel that they are voicing the needs of the children and adults (the needs that they know about, they are not pretneding that they know what it is like to be disabled, they are talking about the needs they have observed day to day).  And there are two lots of main goals, one that is for essential services and a lifestyle that will make life easier and more valuable and the other that is for rights and to be treated normally and as an equal.  They’re different goals and we need to acknowledge them and move on.

Stop calling each other names and get on with the important things like commenting on the NDIS and how it will impact upon your lives.  And stop acting like children.

No wonder its taking us so many years to move forward in the disability sector.  You should all be bloody ashamed of yourselves.