Multiple Sclerosis Society of Queensland
Reception to mark MS Awareness Week : 26th May - 4th June 2010; and
World MS Day - 26th May 2010 and to honour the "Charcot Champions"
25th May, 2010
Treasurer and Minister for Employment and Economic Development, the Honourable Andrew Fraser MP,
President, Multiple Sclerosis Society of Queensland, Mr Jonathan Loraine,
Vice President, Mr Roger Burrell,
Executive Director, Mr Trevor Farrell,
Charcot Ambassadors,
Charcot Champions,
Staff, volunteers and supporters of MS Queensland,
Distinguished guests,
Ladies and Gentlemen,
As has become customary in Queensland, in support of the national process of reconciliation, I acknowledge Australia's indigenous peoples and the original inhabitants of the lands and waters where the city of Brisbane was founded, the Jagera and Turrbal peoples, their elders and descendants.
It gives me considerable pleasure, on the eve of the second World MS Day, to welcome you to this reception to mark MS Awareness Week and to recognise and thank the supporters of MS Queensland - in particular our "Charcot Champions".
As Patron of MS Queensland, I am especially pleased to welcome this evening Queensland's Treasurer and Minister for Employment and Economic Development, Andrew Fraser, whose attendance has particular relevance for this year's theme in the global campaign to raise awareness of MS and promote practical action to assist MS sufferers - namely, the critical importance of improving access to employment for people living with Multiple Sclerosis.
I think this is a wonderful and vitally important subject on which to focus: just as World MS Day itself was a wonderful and vitally important innovation by the MS International Federation. The extent of its embrace globally in only two years is dramatic and impressive. As we all know, MS is no respecter of national boundaries, and the innovative and creative responses of organisations across the world to the challenges of increasing awareness and knowledge of the disease and of campaigning for more resources to be directed towards research and finding a cure, are both interesting and inspiring - from our own cheeky Australian campaign "Kiss Goodbye to MS", to the Danish "Researcher in a box", to the Chilean volunteers giving green apples to passers-by (for those who don't know, the apple is the symbol of the MS Society of Chile). Just as Facebook and Twitter are helping to spread the news about World MS Day around the world, so, too, is the Internet helping sufferers to reach out with their own stories, to share the story of their journeys, to create contacts and build valuable networks of support that reach beyond the boundaries of their nations and communities - like the marvellous directory of websites and support groups on our own invaluable MS Qld Website, http://www.msqld.org/
I don't suppose that anyone here needs reminding of that address, but I cite it deliberately, because when I place the text of my remarks on the Government House website it is to raise awareness and to reach out to others beyond the circle of those, like you, ‘in the know'. In this respect, the Web is an excellent tool, offering access to both education and assistance. In addition, this mushrooming of information and support via the Worldwide Web has another benefit: enabling a frank and open comparison of the many difficulties - beyond those physically inflicted by the disease - that those living with MS encounter on a daily basis, and calling attention to the need to address these difficulties, as part of the lexicon of national and international action on MS; to have them recognised and placed squarely on the policy agenda of governments. This is emphatically the case in relation to work and employment - this year's World MS Day theme - and a subject which preoccupies MS sufferers and their families worldwide, as any quick survey of MS websites will show, revealing the human stories behind the factual reality that people with MS typically have a lower rate of participation in paid employment than those with other chronic diseases - in fact, one of the lowest work participation rates compared to those with other chronic illnesses.
Again, no one in this room, in this gathering, needs a reminder of the devastation of a diagnosis with MS. And we would all agree, I am sure, that this diagnosis need not - should not - be accompanied by the arrival of unemployment and its consequence, sadly, in many countries and communities around the world, of financial hardship and poverty. And yet for many, clearly, that is the case. According to briefing provided to me by MS Queensland, a global survey found almost half of respondents gave up work due to MS within three years of being diagnosed - and that 80% of those diagnosed are unemployed within 10 years of diagnosis. In Australia, a recent national survey, the Australian MS Longitudinal Study, examined the implications and potential causes of this situation - and confirmed that it is a central issue for our own MS community.
There remains much work to be done on this issue. The global employment survey I referred to earlier (to be found on the World MS Day website www.worldmsday.org) designed to identify more clearly the workplace issues faced by people living with MS, is ongoing, and the results and the further research which will follow at the national level will be keenly studied and analysed by those wanting to map effective strategies and formulate recommendations for action for governments, employers and others.
From my reading, there will need to be a whole suite of actions - and targets for lobbying - tailored to the different ages of those affected, their level of debilitation and prognosis. For example, for someone diagnosed in their teens, still at school, access to part-time work - the classic job to earn pocket money and gain work experience - will be important to ensure they are not deprived of opportunities to develop, to participate in and contribute to their communities and to society in a meaningful way. For others, diagnosed as adults, already in employment, embarked on careers, with family and financial responsibilities to consider, there need to be adaptive pathways, created by employers willing to make accommodations for employees to enable them to keep working, so long as they wish and are able to do so. This will be easier where individuals are known and valued by an organisation; much harder in other circumstances. When there is a choice, why employ someone who is ill, whose long-term prospects are uncertain? Why go to the expense of adapting a workplace physically to enhance accessibility or adjusting work practices to allow more flexible working hours?
These are hard questions to ask. To some extent, they should be answered through government action - legislating in accordance with equal opportunity and access policies to require employers to adapt workplaces to accommodate persons with special needs. They can also be answered in a hard-headed way, making the economic arguments about the costs to society of not keeping MS sufferers in employment, costs which can only increase with the numbers of Australians with MS rising by about 8% each year.
They can be answered through appeals for compassion and generosity - and it is gratifying that Australians generally have proved responsive to such appeals, but that, also, is not enough. This campaign on employment for MS sufferers is not about one-off gestures - not an appeal limited to World MS Day or MS Awareness Week - but rather part of a sustained effort to change attitudes by educating everyone in the community, including employers, about MS and also about the broader values that attach to work; that it is not just a matter of income - vital though that may be - but is also about self-esteem, self-confidence, having a sense of identity, of purpose, of belonging and contributing to the community in which one lives. These things are all critically important to the wellbeing of people, and even more significant for those battling a chronic, debilitating disease like MS, with so many unknowns, so many mysteries still attaching to it, adding to the difficulty of changing mindsets - of employers, families, friends and colleagues - from negative to positive, to move from focussing on limitations and what may not be possible to the opposite - on what is possible and how to expand the field of possibilities.
It is a big challenge. Shifting attitudes, encouraging people to think and act differently - effectively to accommodate differences in others - is always tough. And like all challenges, it needs dedicated and committed champions to make it happen. The American Golfer Patty Berg once said: "What does it take to be a champion? Desire, dedication, determination, concentration and the will to win."
She was talking about golf, but to my mind her words apply just as accurately to the Charcot Champions, whose generosity and steadfast commitment, whose concentrated focus on the MS cause, is so critical to the ability of MS Queensland to fulfil its mission.
All of our treasured Charcot Champions are individuals who, for diverse reasons and from diverse backgrounds, have refused to accept the mysteries and limitations of this disease, and who instead have dedicated considerable resources, time, effort and energy to improving community understanding of MS and raising the precious funds to advance scientific understanding of its causes and possible cures. Those three "Ds" Patty Berg identified - Desire, Dedication and Determination - characterise the Charcot Champions, and it is abundantly clear that without this dedicated band, working alongside the Board and staff of MS Queensland, the exceptional work of MS Queensland would not be possible; the exceptional support provided to the newly diagnosed would not be possible; "Life at Annerley" would not have been conceived and created; the important research may not have occurred, or been significantly delayed; and the supportive network of information and support for people living with MS would not exist. In short, you have been not only invaluable, but indispensable to MS Queensland, and on their behalf and on behalf of the whole Queensland community, I thank you for your efforts. Usually, I wouldn't single out any member of the group, but I think it is in order to mention one of our Charcot Champions - Matthew Eastman, who at the last minute could not attend this evening as his partner is unwell. Matthew is a passionate fundraiser, in memory of his cousin, Joel Eastman, who very sadly, died recently - a young man only in his 20's. Matthew - working with Baulderstone - was the largest fundraiser for the Brissie to the Bay Bike Ride last year, and I am sorry he could not be here for us to say "thank you" directly and in person, for a mighty effort. I would ask Trevor to pass on those thanks on our behalf.
Ladies and Gentlemen, Minister, while I am expressing thanks and appreciation, I must thank all of you, also, for being here this evening - for choosing to join us for this special reception, on the eve of World MS Day. I'm sure you share my hope that World MS Day in 2010 will be even more successful than the inaugural Day in raising awareness of MS and also that the focus on employment will prove a valuable and worthwhile theme, including here in Queensland, creating greater opportunities for persons with MS to join or remain part of our workforce, finding fulfilment through work and at the same time making a valuable and valued contribution to our community.
Thank you.