October 2003 #2

Who Cares?

A few years ago I was at a disability conference and during one of the coffee breaks I got into conversation with another bloke. I'll call him Bill. 

Bill was in his seventies and a widower. He told me his story with tears in his eyes. His wife passed away a few years prior to my meeting him and since then he had taken over the fulltime care for his 40 year old daughter. She was born with a severe intellectual disability and had physical disabilities as well. She could not be left unsupervised for extended periods, had fits of violence, was overweight and suffered from a range of medical conditions that required constant vigilance.

Bill was tired. He told me that until he retired he had never known the life his wife had lived as, until then, she had to bear the full load of caring for their daughter (not to mention their other children). Bill was alone and his own mortality was staring him in the face. I can still see the tears in his eyes as he asked me, "What will happen . when I'm gone?" What could I say? What can we say to all the Bills and Bettys who care for their loved ones as they negotiate the world we have allowed to emerge around us?.

In September this year, our Prime Miniature, John Howard attended the National Carers Conference in Canberra. He delivered the opening address and said, in part, "I want to address some remarks to the Government's approach to the enormous contributions that Carers make to the stability of our community. Social stability and social cohesion and caring for people is an integral part of Australian society".

I found this to be an extraordinary turn of phrase. I'll repeat it. "Social stability and social cohesion and caring for people is an integral part of Australian society".

What Howard does here is turn the emphasis away from notions of collective responsibility for those who are less fortunate than ourselves and turn it back on the individuals unfortunate enough to have to care full time for their loved ones. He says to Carers, you make an enormous contribution but that is what we expect from you as members of a stable, cohesive society. Howard has said to  those who look after the most vulnerable and needy, as good Australians, it is your duty to care for your loved ones.

This is nothing new and is nothing less than what we should expect from a Liberal Prime Minister, a man steeped in the principle that individualism and trying to provide the greatest return for your energy will form the basis on which collective action will emerge to benefit everyone. In Howard's limited an blinkered view of social processes, he ascribes success to individual drive and motivations and social processes as governed by the 'invisible hand' of mutual exchange unhindered by government or other interventions. In short, if left to our own devices, society will become better and all will benefit. I wonder what benefits Bill has received over the last 40 years or so?

Jean Tops, the President of the Gippsland Carers Association said on her return from the conference that, "The conference heard research that full-time unpaid Carers were 60% more likely to suffer one of more than 50 debilitating illness' such as depression, heart attack and stroke than the general community."

In short, the reward carers can expect from our present systems of government, be it under Liberal or Labor, is a shortened life expectancy and a lower quality of life all the while worrying over the ongoing care of their loved one after they are no longer able to support them.

There are 600,000 families in Australia who care for at least one member with a disability and who are not able to access adequate care for their loved one which means that the family (in most cases the mother) is the primary carer. These carers don't work a 38 hour week with sick pay, holiday pay, superannuation or other perks. They work 365 days a year, on call 24 hours a day for the measly sum of $43 per week in Carer's Allowance.

The recent announcement that the Australian Federal Budget would be in surplus to the tune of $7 billion would be turned into a budget deficit of over $20 billion if full time, unpaid family carers took the drastic action of 'dumping' their loved ones in care (if it was available in the first place).

As Jean Tops says, "This (or any) Budget surplus is only possible on the backs of the 'unpaid slave labour' of more than 600,000 full-time 'unpaid Carers' of people with profound dependent disabilities who would otherwise be in aged care nursing home beds or in supported accommodation in the 'one-size-fits all' disability group home system".

So how do we respond with the Carers to John Howard's call to remember that "Social stability and social cohesion and caring for people is an integral part of Australian society"? How do we enter into the life of the Bills and Bettys who, while aging themselves, are faced with the terrible knowledge that when they do pass away, their loved one will be left to the devices of the state? 

Under Howard's scheme it would be other family members who would take up the caring role. Brothers, sisters, uncles or aunts, Howard would trumpet, need to remember that if they want to be responsible members of Australian society they should take up the slack in the system. But I ask you, how would you feel if one day an adult with profound and multiple disabilities was thrust upon you and you had to rearrange your lifestyle to suit them? Would you do it?

Heres some startling statistics to help you understand where Howard and Costello got at least part of their budget surplus from.

Over 3.6 million Australians (or 19% of the population) have a disability with handicap. Of this group 2.3 million have their primary care provided by an unpaid family carer including the provision of accommodation. Over 71% of all these carers are women and 78% of all primary carers are of workforce age (18-64). Unpaid families provide over 91% of all accommodation support for people with disabilities and while our government spent $3.7 billion on Aged Care accommodation in the '99-'00 budget they provided only $1.2 billion for disability accommodation.

Jean Tops responds to these figures by saying, "At the present time there is no avenue for unpaid family Carers to seek remedy under Human Rights, Equal Opportunity or Disability Legislation because Australia currently has no Carer Recognition or Entitlement Legislation. This grossly discriminatory situation has created a society that tolerates family members being treated as 'unpaid slave labourers' without any rights."

I would respond to Mrs. Tops by saying, that is exactly what Mr. Howard wants because if you and other unpaid family carers were to stand up and fight for equal rights for both yourselves and your loved ones who need care, you would be threatening the social stability and social cohesion of Australian society. As long as the systems under which we are forced to live offer no respite or opportunity to even think about the possibilities of a different way of organising our social and economic relations, then Howard and his ruling class mates (of all political shades) will continue to regard carers as nothing more than slaves.

How was Howard and Costello's budget surplus won? In part by ensuring that Bill is not able to take time off and fight for his rights. However, there is another possibility here.

We should not allow Bill to remain voiceless. One day it may be our turn to take on the caring roll. God forbid it should happen but a decline into dementia or other psychological change, a car accident, a work injury, or a careless jump into a swimming pool could result in anyone of us or our loved ones suddenly being transformed from an able bodied, self reliant and self sufficient individual into a dependent, disabled burden on our families. Sure, we say, if that would happen I could never regard my child or parent as a burden so its wrong to think that.

I'm sure Bill doesn't think his daughter is a burden. I'm sure he loves her and I'm sure he and his late wife know her, perhaps, better than they knew each other. So no, the disabled family member may not become a burden in the sense of wanting to abandon them. But I challenge you to ask anyone who has a family member with a disability and who will answer from the bottom of their heart, whether they don't have times when they ask "what if?"

Its all these "what ifs" that John Howard and the ruling elites deny when they say we should do our duty for the good of the community. Mutual obligation, under a pure interpretation of liberal philosophy, flowed both ways. For the thousands of Bills and Bettys out there, the tap of compassion has been turned off while the elites celebrate on the backs of those whose hearts are constantly breaking as they quietly, lovingly, tenderly care for the person whose life depends on them.

A young boy with a disabled brother once told his mother about a dream he had. In the dream he had a fireworks rocket and when it exploded in the air the falling sparks took away everyone's disabilities. I guess the question that arises out of this story and what troubles me is whether it is socially responsible to deny two boys and their family the right to enjoy a better quality of life because those in power want to maintain a stable and cohesive but repressive and unjust social system - at any cost.

The possibility that arises out of all this is one in which we, the able bodied who are not tied down with the 365 day a year job of providing constant care, become the conduit for the voices of all the Bills and Bettys who ask, "What will happen . when I'm gone?" and to use our resources, that are not sucked up in the carer role, to advocate for those who ask "what if?" We don't need to say anything. The Bills and Bettys do not need more words. They do not need more letters or advice. What they really need is action. What we need to do is to work towards throwing out the systems we currently have, that treat carers as unpaid slave labour, and replace them with ones that can provide a better chance for the Bills and Bettys to enjoy their declining years and to remove the burden from all those little boys who dream of exploding rockets and brothers who can play in their back yards with them.

Figures used in this article were sourced from the Gippsland Carers Association and Carers Victoria.