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by Ron Fraser
This is an edited version of a speech delivered at the ME/CFS/FM Awareness Week Rally, Parliament House Canberra, 11 May 2000
In his address, Ron Fraser of the ACT ME/CFS Society Inc exposed the dangers that could lurk behind the concept of "mutual obligation" (as proposed in the McClure Report* on Welfare Reform), and appealed for "a compassionate, enabling approach that helps those with disabilities, including ME/CFS and FM, to regain their lives, earning power and physical activity in a gradual way and at their own pace."
I want to talk about two areas I think are very important – one of them is the social security system and the other is work. Welfare and work are interdependent in the sense that, without support from one or other of them, we’re going to be reduced to poverty when our health is worst. Both those areas have to be able to respond to our illness with compassion and understanding.
Yet nearly everyone I know in our Society has suffered at one time or another from insensitive, cruel, or simply ignorant behaviour by bosses, CMOs [the Government doctors who assess pension applicants] or people in the social security system. Too many of them don't even try to understand, or make false assumptions about us through lack of information. In the case of doctors, many haven’t kept up with the research. The result is that we don't get the support we need, or are written off altogether.
Everything we do to get the facts better known, so that the people who make the decisions that affect us should know and understand more about our medical conditions, is worthwhile. The presence of the politicians here indicates that there’s a cross-party interest in these things, and we need to make sure that we continue to speak to those people.
To take the social security system first, there was an interim report earlier this year on what was called "the welfare system". It employed the concepts of "mutual obligation", "putting something back", "participation" and so on. This report was received quite well, if cautiously, by groups like ACOSS and other peak groups concerned with people who rely on the social security system.
Those groups saw the report as providing an opportunity, if properly implemented, for those, for example, on the Disability Support Pension (DSP) to receive help in returning to the workforce or for greater participation in the community in other ways, rather than being cut off from the wider society.
One thing these bodies, and many social commentators agreed on was that such an approach would not work if it was undertaken in a punitive way. As I will show later, this is certainly true for those with ME/CFS or FM on disability support or other forms of support for those unable to work.
But what did we find last night in the Budget? The Government expects to "save" many millions on social security payments, targeting the disabled as well as other groups such as single parent families. Their justification is that there is a "mutual obligation" on those who receive "welfare" "to do something for the community in return". Whatever you think of the theory, it assumes that those receiving disability support can be returned to the workforce, or to participation in voluntary organisations, if only enough pressure and cajoling is applied.
This attitude ignores the basis on which the DSP was instituted, namely that it is difficult to qualify for it - as many people with CFS and FM will testify - but if you do qualify, it is because there is something seriously wrong with you that is likely to last at least 2 years. It is also already regularly reviewed in a pretty tough way, so where are the savings coming from? I am deeply suspicious that they will be produced by pressuring people to try to return to work activity when it is as yet far beyond them - with serious consequences for their health and self-confidence. We need to assure all political parties that the community will benefit far more from a compassionate, enabling approach that helps those with disabilities, including ME/CFS and FM, to regain their lives, earning power and physical activity in a gradual way and at their own pace.
Certainly it would be great if there was a certain amount of "one to one" assistance for people on the DSP, so that when they are able to participate somewhat more they get real help to do that, but if this is run as a punitive operation to force people off the pension it will be a disaster in personal and political terms. I ask all of you, whatever your political persuasion might be, to be ready to write to your local political representatives, especially government members, and to the media, if that’s the way it starts to go.
The other related area is that of work, which as many of you will know is extremely tricky indeed. It’s very hard for people to negotiate staying at work, returning to work, or getting some kind of part-time or working-from-home arrangement or other non-standard pattern of working.
I want to take three people I know with CFS to show the need for a more flexible approach. I use them to illustrate that you need to know where the person concerned is coming from, to take them at face value and to help them with what their problems are at that stage, rather than imposing a view that if only they would make an effort they would be sure to recover very quickly.
The first person I am thinking of whom many of you know, a science graduate then in her late 20s working in the public service, became ill 10 years ago and hardly worked at all after that. She fortunately managed to get the DSP after a lot of trouble, but also sought to obtain a decent superannuation pension on grounds of invalidity. For many years that was knocked back by the superannuation authorities and their expert panels, at least partly on the absurd ground that "she was young, and a cure might well be found" in the 30 years before she reached maximum retirement age! People’s needs are now – they’re not thirty years hence!! That battle finally had a happy outcome, but only because the person concerned fought her case tirelessly, not surprisingly to the detriment of her health.
The other appalling thing that happened to her was being forced to return to work at a time when her specialists and others supporting her said it was absolutely impossible for her to do so. She was compelled to go back for some months, which she told me sometimes reduced her to tears, lying on the floor at work, unable to do the simplest tasks, but compelled to continue this farce because people thought it was simply a question of getting her in the right mindset. That kind of inhumanity must never go unchallenged and whenever we hear about it we ought to expose it. Because it’s absurd. If the attitudes behind this episode become evident in the application of "mutual obligation" to the disabled generally, or to people with ME/CFS in particular, they will have the same cruel and senseless results as in my friend’s case and will benefit no-one.
The second person I am thinking of in relation to mutual obligation was somebody around the same age, who has also had ME/CFS for around ten years, whose visual arts course was interrupted by ME/CFS and has never been completed. At that stage she had to give up the idea of working. She fortunately qualified for the DSP early enough in her illness to be able to live a frugal life financially, keeping her morale up with meditation and gentle yoga practice. If the system had tried to force her into study or paid employment or voluntary work at that time, I am sure she would have experienced a series of failures and major relapses. Now, after gradually expanding her physical activities, she is studying again at TAFE and doing some paid teaching and other work. She has to be careful, and can’t take it for granted that she won’t have minor relapses, but her health outlook is reasonably good and her morale very high. Moving at her own pace, she has been able to increase her contribution to the wider society. If you had pushed her to work or other participation in the earlier stages of her illness the results would have been devastating.
The third example is my own, which largely concerns flexibility in working conditions. When I first got CFS, I was away from work for 14 months. Fortunately, as a result of pressure from a close colleague and the union’s industrial officer, I obtained compensation from Comcare from then until I retired. The CMOs and my own doctors believed I could have returned to work much earlier if I had been allowed to start by working from home. When I did get back to work, for years the central policy of my Department would not permit home-based work in my circumstances. Many writers on CFS speak of the benefits of doing at least some of your work from home, especially where people suffer from increasing tiredness and concentration problems as the day goes on. After a long standoff, I was allowed some afternoon home-based work on an "experimental" basis, during which I achieved full-time hours for 3 1/2 months. However, when I had a two-week relapse, and it was apparent that I was unlikely ever to return to full-time work in the workplace, home-based work was ceased and I was limited to the hours I could do in the workplace in the mornings. In the end, surrounded by pessimistic management views of my future, I took a redundancy, my condition worsened by the conflict over this issue.
What I believe I encountered was something very common, though perhaps not as bad as the disbelief many others have had to put up with. It was an inability or unwillingness to understand a condition that does not progress either to full recovery or to total disability or even death. The idea of a variable condition that might never completely resolve itself, and that requires ongoing flexibility by the employer, is not one that is welcomed by employers. The idea that people with serious cases of ME/CFS or FM will readily find sympathetic employers, who will keep or take them off social security, may be too optimistic in many cases.
It seems to me that unless people in decision-making positions are prepared to take account of the nature of ME/CFS and FM, and are prepared to modify their work practices and to accommodate us with some flexibility – in my case it was working from home but there will be many other things that will affect individuals – they are going to waste the skills and abilities of people who have still got a valuable contribution to make, who have not in any way despaired and who are still prepared and able to make a contribution. On the other hand, to try to force people with such conditions into an unsympathetic workplace when work is beyond them is a recipe for disaster.
To conclude, I think it’s important that we watch what happens as a result of this Budget and the forthcoming "welfare report". It’s imperative that we go on organising activities like today’s. You can see from the response we’ve had today that there are people who are willing to listen to what we have to say. A number of the politicians said to us during the morning that if we have matters we want raised in the Parliament, they’re willing to ask questions and take up issues such as money for research. It’s really up to us and our organisations throughout Australia.
I think the response we’ve got today shows that it is possible to start to make some inroads, raise consciousness and be heard, even though many of us here today will need a fair bit of time to recover from the event.
This is a very good start in raising the standard of awareness, and I congratulate you all for being here and those who sent their stories and pictures. I think we’ve done well. Thanks very much.
*Government response to the McClure Report on the FACS website. Includes:
statement by the Minister for Family and Community Services, Jocelyn Newman
What does it mean for people with disabilities?
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