Pathology Australia 2010 National Conference, Melbourne
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I’d like to acknowledge the traditional owners of this land and pay my respects to their elders, both past and present.
I’d also like to welcome our visitors from interstate and overseas to Melbourne. It’s great to be here today.
Moses, Demosthenes, Winston Churchill, Somerset Maugham, Ernest Hemingway, John Updike, Gore Vidal and Wendy Harmer began life with a stammer or a stutter; a swallowing impairment, a sense of choking fright in mid-sentence.
Nye Bevan, the Welsh Labour firebrand, was once asked; how do you cure your stutter Nye?
And his answer was: ‘by torturing my audience’
But they, in time, prevailed.
But for them it was a long, hard, sad road toward audibility. A longer one to confidence, a journey one step at a time, one false step at a time, to thousands and thousands of agonised miles to social credibility.
To know that you failed only three words in, or six words in, and you’ve a whole day of certain failure ahead of you, is a hard thing to cop at 8 am, as you queue for the bus to work. To prepare to meet the faces you meet around the coffee urn.
It’s a hard thing to know that a kind of – that a kind of impairment deflects the gift of literate speech that we share with Shakespeare and Lincoln and Barack Obama. To know that in some sense you are an unchosen; an also-ran, an outsider, a stranger beating on the window glass of Australia for acceptance.
But to know this, when you are four or five, is an unimaginable challenge. To think it and to know it, but not to be able to say it, or say it soon. To be pointed at and mimicked and mocked and giggled at by those harshest of judges, little children – other little children your age – is a social nightmare, I suspect like racial prejudice or persecution.
It doesn’t end in childhood of course. Ben Jonson, the great dramatist and contemporary of Shakespeare once wrote; language must show us the man. Speak so I can see thee.
But what if you cannot speak as well as you think? What if language doesn’t show you as the person you are. What if words fail you? How then does the world see you? I think we all know the answer to that last question. If you speak differently, you are judged differently.
It effects not only your social ease in childhood, but learning skills and literacy and academic performance and employment and marriage opportunities and the level of happiness, or otherwise, in a lifetime.
All of this is the reason why I’m really pleased to be here this morning. I am delighted to be able to deliver the opening address of Participation 2010, because I believe speech pathologists are not just health care professionals. The name of my talk this morning is Speech Pathologists are Civil Rights Activists.
You are civil rights activists, even if you don’t see yourself in that mold. You are civil rights activists because you give the voice to citizens who are literally not heard.
I’m not going to waste your time this morning by telling you what you already know. I won’t list the wide range of services you deliver. But I will acknowledge your emotional content and the work you do.
Many people go to work each day and they contribute their intellectual endeavour and their physical endeavour. To be a speech pathologist on the frontline, in my opinion, means you must also contribute your emotional endeavour. For the people you work with, you can’t have a bad day, because a speech impairment does not stop someone having very acute emotional antennae. You must give of yourself every day in a way which I think many other occupations and callings don’t have to do.
I won’t talk about the need for more early intervention, because we know of that need. I won’t talk about the fact that more than 260,000 Australians have a disability, a speech disability, because we know that. Or that the figure is likely to rise as our population ages.
What I want to do is take the opportunity to report to you on what I sense, since becoming a Member of Parliament two and a half years ago, working in the area of disabilities.
Before I was elected to parliament, at the end of 2007, I spent 14 years in the Australian Workers Union. And let me tell you something; I thought I knew my country. But I didn’t.
The past 30 months have opened my eyes. What I’ve seen is that hidden in plain sight in our country are more than two million Australians who are exiles in their own country. Who live behind walls not of stone, but of neglect and ignorance. It is shameful.
Australians living with a disability spend much of their time and energy battling systems that have been set up without their needs in mind. People end up beaten and exhausted and isolated and just hanging on.
When it takes so much effort to survive day to day, how can people be expected to thrive? The same applies to disability organisations. They don’t have enough time. They don’t have enough money. They are overwhelmed by wave after wave of need, with insufficient hours of paid support which, but for that, the necessary therapies and treatments people could experience a better chance from early years, through school, into adulthood.
So what I’m saying is that it has become apparent to me that we cannot continue putting sweat and tears and blood into systems that are inadequate today and will be overwhelmed tomorrow. We need to find a way of stopping just surviving and to start thriving. What I’m talking about today is uniting behind reforms that are achievable and will make a difference to the proper funding of disability in Australia.
The problem with an impairment in Australia is not the impairment. That’s a challenge. The problem is that people with impairment, by and large, are both poor and powerless. So what I’m talking about, as a possible solution; is the National Disability Insurance scheme.
The National Disability Insurance Scheme is currently being considered by the Productivity Commission. That’s a group of Australians; it’s an independent economic research body.
Many people believe that a National Disability Insurance scheme, or a lifetime care scheme for people with impairment, such as their needs can be met when they arise, rather than being allocated on a scarce rations, which never last the financial year.
Many people that the National Disability Insurance Scheme is our best opportunity to deliver lasting change that will give people with disability a quality self-determination and entitlement.
But, as I said in the Disability Summit a few weeks ago, if that is the case and a National Disability Scheme is the answer, then now is the time for those who work in disability to say so and to campaign for it.
You’re here over the next number of days and you’ve already commenced talking about challenges of speech impediment. Well let me put to you that impairment – be it speech or otherwise – are all linked. Not perhaps the causes, not perhaps the solutions of speech impairment. But if you accept my proposition, then part of the challenge with disability – which you will have seen as practitioners – is that many of the people you deal with lack the necessary financial resources, or they lack the necessary clout to generally get what they need to help treat their impairment. And in some cases I mean cure, but in many cases I just mean working around the impairment, and establishing that person’s impairments are not the defining feature of their character, which too many in our community think is.
So what I’m suggesting to you this morning is that it’s speech pathologists, who contribute so much energy and effort and capacity, need to understand what links you with all the other brands of impairment and why not work on a solution which actually might provide proper resources based on need, not budget?
Nothing of what I’m saying about campaigning for a National Disability Insurance Scheme should be taken to abrogate the Government’s responsibilities. The point I’m driving at is this; I do not believe the Government can provide the whole solution. But I do think a Labor Government do better than its opposite number.
But I do believe that the challenge is too great for the Government alone
We need to enlist support and allies. We need to enlist corporate support. We need to raise public awareness and understanding. We need new allies to reinforce the belief of participants.
I can only imagine the number of times you’ve looked at patients and people you’re working with and wished that, but for some early intervention, or but for some greater resources, the progress that could be made would be even all the better.
Now I believe that if you exempt this idea that we need new resources in disability and a different way of you viewing impairment, then we need to educate and enlist the general public and the business community. I’ll illustrate what I’m saying.
I have established a national dialogue on universal housing. We’ve worked on access to premises and public buildings. It took longer than the Trojan Wars to establish new standards. And that’s the public service.
The idea is that a building shouldn’t exclude someone based on their impairment. We don’t build buildings which exclude women. We don’t build buildings, any more, which exclude people of colour. But every day we build buildings which exclude people with impairment. But after 10 years we’ve worked out some standards. If every year in that 10 years, Australia rebuilds two per cent of its public buildings, 20 per cent of Australia’ buildings could have been made more accessible in the last decade but weren’t. What a waste.
And of course when you move into the residential market, the sacred castles of Australia – the 9 million buildings we reside in – 160,000 being added every year.
We’ve established a dialogue, and we’ve included representatives from the building industry. What we’ve said is why wait for the future to happen? And what we’re doing is, we’ve set targets to build universally designed houses.
The building industry is getting on board, because they see that as the population ages, as disability and impairment becomes more prevalent, it’s commercially stupid to build houses that we can’t grow old in, that don’t reflect the houses that we live in. It’s commercially stupid to build houses that are harder to sell and re-sell.
Why, for instance, do home buyers want green homes? The awareness and understanding has been raised to a degree that they can see that an energy efficient home is cheaper to run, and easier to sell. We need to do the same with universal design standards. We have to make home buyers aware of the fact that only an accessible building is a smart investment. We have terms like the green dollar to refer to the purchasing power of people with environmental values. We have the pink dollar to refer to the purchasing power of gay men and women. I don’t know what colour we choose for impairment, but we need to make business aware of the purchasing power of the disability dollar.
We have to make people understand in our community that when you don’t have a community which is accessible to all, we in fact exclude millions of people.
Once the penny drops, hopefully it will be easy to get business to understand that there’s more to workplace diversity than gender, race, and religion. They need to understand that one of the best ways to understand the market sector is to employ people who understand that market. In other words, it’s not corporate charity to employ someone with a disability – it’s just simply good business.
People with disabilities are assets, not liabilities. They’re consumers, not charity. They’re value adders, not costs. It goes without saying that a national disability insurance scheme could create a huge incentive for business to start seeing people with disability as assets, as the consumers, as employees who can deliver a competitive edge.
We cannot afford to take progress for granted.
Australia once before considered the idea of a universal safety net of funding for people with disabilities – during the Whitlam Government. That opportunity was lost with the dismissal. I’ll ask you to explain to the foreign guests how our constitutional monarchy works. But 35 years down the track the Productivity Commission is now investigating how such a scheme could be implemented.
It’s taken 30 months to get disability on the political agenda at all – very hard work by myself and senior Minister Jenny Macklin. Likewise the impact of the ageing of our population is beginning to be understood. I think there’s greater awareness and greater understanding.
I’d suggest to you today that the field you work in – speech pathology and disability more generally – is one of those political iceberg issues where only the tip can be seen, but there is much more happening in the community than is recognised in the mainstream media.
This brings me back to the civil rights work you do, day in day out, as speech pathologists. you might be uncomfortable with that term – but we’re not civil rights activists, we’re speech pathologists, you say.
But may I also suggest to you that when you can help people participate, you actually, you conduct a transformational function not just on that individual’s life, but on our community as a whole.
The work you do is important to the life of people with disability. So I would like you to see it as just one front in a bigger battle. If you think that what you do contributes to better treatment and equality for people with disability, then what I’ll ask you to do, is say that some days when you’ve done your long shifts and you’ve done your work and you just wish there was just a little more resource and a little more support, and just imagine how many other groups were working in the same areas of endeavour, the equal treatment of people with disability – you should see yourselves as just one battalion, perhaps, in a bigger struggle.
I believe we’re on the verge of a better deal for people with disability, provided that those who work in disability can work together. For the challenges confronting you are not so different in any way to common root cause problems, poverty and powerlessness, as occupational therapists deal with, as psychologists deal with.
As all of the people who work in disability, and indeed the carers [indistinct]. If you believe that there is some sense in the proposition I’m advancing, the priority of change. That disability, whilst it mightn’t be the most important issue in Australia, there is certainly no other issue any more important than allowing people to participate equally.
And I need you to speak up. I need you to speak individually and I need you to speak collectively. For all those years of study and commitment and emotional aid that you’ve contributed surely makes sense to change one or two per cent of what you do to, to rather than deal with each challenge as it comes in the door, and that’s not the first thing, that’s all the economic and social circumstances the person brings with them – is to change the idea that perhaps we should probably fund disability. You should keep yourselves informed about the work of the Productivity Commission and get involved.
Shakespeare wrote in Julius Caesar:
‘There is a tide in the affairs of men which, If taken at the flood, leads on to fortune… … we must take the current when it serves, Or lose our ventures.’
Now Shakespeare’s character Brutus was talking about the final battle in the civil war in ancient Rome rather than about the fight to deliver a national disability insurance scheme, but I think that principle holds. I’m suggesting this morning that we’re on the verge of transformational change in the way that we deal with disability.
I believe we are close.
It is not inevitable this process will occur – but I believe we are close. I do think a strong, united ebullient and strategic campaign is involved – not changing what every, not changing all of what you do, but changing very little about what you do.
The details of the scheme are yet to be worked out. The commission is due to report in June of 2011. And it’s by no means certain what a scheme would look like. There’ll be complexities, arguments about scope and definition, how best to structure it, and how to administer it. We should be not – but we should not be diverted or delayed from our goal. The goal should be transformational change, the kind of change that will put Australians with a speech impairment and other impairments on a secure footing, and deliver gains which cannot be wound back.
Some people say this is a once-in-generation opportunity to include people. I don’t think that. I don’t think that this chance will come around again. We have an opportunity in this country to do disability better than anywhere in the world. This is going to require commitment and effort from whole lots of actors who perhaps hadn’t realised they were even in the play.
I don’t believe people know what a national disability insurance scheme means, not yet. I don’t believe that people can individualise the benefits of a national lifetime care scheme, not yet. I don’t believe that people fully grasp, Australians fully grasp the immediate gain.
It’s the nature of speech impairment, for instance, and the nature of other impairments, is it can actually happen to all of us in manners we never expected. What we have to do is educate people that disability is not someone else’s challenge – we are but one DNA twist of fate, one shaft of fate, one accident or stroke, and then we too can need these same services.
I think the challenge in disability is to ensure that people know enough about the magnitude of the issue, and the kind of solution that could be offered by a national lifetime care scheme. To do so requires making sure the public understand what is happening and that what could happen to a person with disability could be them.
We need to make the point that a national disability insurance scheme will deliver huge benefits to people with disability, and over the long run will in fact not cost the taxpayer, but in fact re-include 2 million people in exile who currently languish for want of greater support.
This morning I’m suggesting to you that we should be starting a national conversation about disability, and turning that conversation into a national movement of change.
The work that you do is important work. It is valuable work. It is work which if you weren’t doing it, I wonder what would happen to people, I truly do. But if you want to make your work more efficient than it is without changing a lot of what you do, if you’d like to help provide all those people that you see and work with who lack some resources, some extra hours, then I think you can’t – you cannot afford to ignore the possibility from a national disability insurance scheme.
It can be done. It must be done. The past is ours to complete. Progress cannot be taken for granted. But I believe that all of you and all of us can educate a smart and generous nation to be smart and generous to all of its people.
Good morning, and have a lovely conference.