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Speech by The Hon Bill Shorten MP

World Multiple Sclerosis Day Forum on Workplace Flexibility

Location: Parliament House, Canberra

We all know that we will, over time, become less able to do things, less able to work, less able to look after ourselves.

We hope our own ageing can be done with dignity and on our own terms.

For sufferers of MS, this process is faster, more painful and more certain. It is life cruelly speeded up and caricatured. It is old age experienced early. It is the tunnel with no light at the end of it.

Eighteen thousand Australians have it, with its varying effects on speech, vision and movement.

It can be episodic, or a continuous inexorable worsening of the life you live, a diminishing of capacity. The cause is unknown and there is no cure. You may live as long as other people do, but not as well.

This is not a quiet decline. This is a series of rearguard actions – held, arrested, delayed by drugs, treatment and effort – then further retreats – but never a surrender.

Ninety-nine percent of sufferers spend at least some time concealing it – in denial, in hope, in embarrassment or in fear.

It is often, in particular, concealed from work colleagues.

Sadly this act of self-preservation is often necessary due to the attitudes of bosses and acquaintances.

But eventually you can’t hide it.

Eventually it’s vivid to everyone, like blindness or an amputation.

You lose your driver’s licence, your power to charm, your self-confidence, your will to prevail.

The reaction of others can be the worst, and most disabling part of the disease. The realisation that you are becoming, slowly or quickly, another kind of creature in those eyes.

That you are being seen as a kind of oddity, an embarrassment, and that all speech directed at you will be over-polite, in italics, evasive, pregnant with what is being unsaid.

The average loss per MS sufferer in money terms is 1.37 million. But these are only money terms.

What is unstated is the cost to the soul of the loss of the pursuit of happiness, the avoidable loss of a job at forty, the loss of genial, mocking friendship, of being able to lift up your children, of family camping trips, of an easy visit to the toilet, of a quiet night’s sleep and a calm awakening, free from fear.

There is much that can be done for MS sufferers with the internet, mobility aids, keyboard communication, with comrade sufferers and paid carers resident in the home.

There is more that can be done with understanding and goodwill on behalf of employers.

A sufferer should not be stigmatised or forced out of the workplace, the office, the committee room, when there is much for them still to contribute to a company, a community, a society.

A job you can do while seated. Working hours that suit you. Rest periods during the working day. Good, understanding people around you.

These are not impossible demands. They should be what is offered as a matter of course.

As out society ages and chronic illnesses or disabilities become more prevalent they will need to be offered, if we are to adapt to the demographic shift of an older population and shrinking workforce.

Even today the cost of replacing staff is such that smart businesses realise it is better to adapt to the person with an illness or disability than to force them out through an unbending and ignorant attitude.

Unfortunately discrimination is still rife and is often invisible to the person doing it.

It is often based on prejudice, fear of the unknown, covered with a fig-leaf of economic rationalism.

It is too easy to say that a person in a wheelchair, or with difficulty speaking, will not fit in, without giving them a chance.

It is easy to assume that once the job applicant cops their rejection and leaves, they will have something else to fall back on.

We are all of us challenge-seeking animals, problem-solving creatures, organisms in search of work, and the enabling and ennobling validation work brings.

In our work we often find our identity, our dignity and our financial sustenance, our pride as a breadwinner, our standing as a citizen, a parent, a role model, a community leader.

for many of us work is our community, a gathering of equals where we are treated with respect and camaraderie.

Premature removal from the workplace only adds to the feeling of being disabled, rather than being a person with a disability.

It reduces skills and confidence and can make a future return to work impossible.

Jeff is a 58-year-old teacher, diagnosed with MS three years ago.

Jeff is OK.

He can no longer take long bush walks. He stays close to home.

He can no longer assume the workload of a school principal.

He has enjoyed his work now as a teacher on a light load.

Life has changed. It has not ended.

If we could improve workplace participation and prevent just 2 per cent of people going on to the Disability Pension, then in ten years the annual savings would be $1.6 billion.

The benefits to the people saved from the purgatory of forced unemployment, and able to keep doing the job they love is incalculable.

This is achievable but it needs a change of attitudes.

Learning how to talk with a fellow human being disabled by MS is our first duty, I think.

Learning how to be true and kind and not mendacious. To offer comradeship.

To be a comfort and a companion and a guide and a help and a mentor without being false of speech or purpose.

But above all there is, as with racial prejudice, a change of attitude needed, a change of attitude taught in schools and in the workplace, a new ethic of amiable mercy like that which Australians over time have shown to migrants, boat people, Indigenous people, a widening the net of decency in all who are not so afflicted, a larger pool of understanding and good humour than we have now.

This surely is the brand of any civilisation, any good religion, any programme of hope, any definition of progress.

I hope our discussions today increase just a little our wisdom and our justice and goodwill, in the face of this, an enormous question with very few easy answers.