May 2015

“I never thought this could happen to me”

When I meet someone affected by the lottery of life, how do I look after them? And what is the most caring way to respond to the question, “why did this happen to me?” asks Moira Byrne-Garton.

BY Moira Byrne-Garton

The earthquake in Nepal shows how the indiscriminate forces of nature can affect humanity. People are stricken. Some have resources or insurance to help recover; others do not. Many will face the emotional and financial consequences of this chance event for many years to come.

These observations are true for any of the disasters we’ve seen in the last decade: earthquakes in Japan, New Zealand and Spain; cyclone Yasi; devastating floods in Queensland and Victoria; bushfires in New South Wales and Western Australia. After tragedy, a common theme emerges. The idea is summed up most succinctly by the cliché, “I never thought this could happen to me”.

On hearing these words of those affected by disaster, I am reminded of the similarity to those who have suddenly experienced disability. Whether through a car accident, a sports injury or illness, a baby’s in-utero stroke, the peculiar cell replication after conception or an unusual set of chromosomes – the gamble of life and nature means that every day, disability enters someone’s life whether as an individual or as a family member. Nobody thinks that will happen to them either.

While some people will discuss “the preference to live (somewhere)”, “the choice to participate in (an activity)”, “the risk to drive”, “the decision to have a baby”, or fatalistic ideas of “it was meant to be”, much of life is chance and luck. Choice, decision, risk and fatalism are not matters to raise with one who has just lost their family member or home in a freak natural disaster, someone injured through the fault of another driver, or the parent of a child whose disabilities are being realised. Certain events cannot be safeguarded. Random chance and circumstance can have more impact than any choice or decision.

Every year in Australia, about 9,000 babies will be born with a disability; many more would not have lived to see life outside the womb. Even more children will be diagnosed with a kind of incapacity in the following years; one in 12 (around 8 per cent) of Australian children aged 0-14 have a disability. Of the overall population, 20 per cent have a disability of some sort (though granted, many would not identify as such). While many disabilities relate to ageing, thousands of people obtain some degree of incapacity through work, accidents or illness every year in Australia.

Despite disaster victims’ often harrowing losses, in many instances insurance covers the cost of a lost or damaged home or other property. In a comparable sense, it is fortunate that insurance meets many of the major costs for those disabled by traffic accidents, workplace injuries or medical malpractice. Until recently, those who acquire disability in some other way have not been so lucky.

The lottery of birth, accident or illness has no real indemnity for the costs of impairment. Medical expenses, early intervention programs, specific personal care needs, and basic equipment top the list of needs. More specialised equipment (usually more useful, but also cost-prohibitive), assistive technology, vehicle modification and home adaptation are necessary for living fully, but become optional extras as in a new era of disability household budgeting.

In the past, finances have tightened as families of those with disabilities or illness often become unable to work, either through constant illness or the dearth of suitable and affordable care. Money may have further constricted as a parent or a partner leaves as a result of seemingly insurmountable stress or depression. This is why there has so often been a link between disability and poverty.

So it’s no surprise that the National Disability Insurance Scheme (NDIS) is so widely supported. Many in the Australian community rallied support for these much-needed reforms, just as people now rally to support the Nepalese after the earthquake. The NDIS shares the costs of disability among the community, and provides peace of mind: if something happens to you, your extra costs of disability or illness will be taken care of.

But there is one thing neither earthquake donations nor the NDIS can cover; and that is the personal dimension of care. When I meet someone affected by the lottery of life, how do I look after them? And what is the most caring way to respond to the question, “why did this happen to me?”

Moira Byrne Garton

Dr Moira Byrne Garton is a mother, caregiver, public servant and writer.

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