Modest Expectations Too

Ron Lord

Ron Lord died at the weekend. Ron was a journalist who grew up in the days of “concrete-foot-in-the door journalism”. This was the accepted muscular journalism of the Norton and Packer era in the late 50s. I met Ron when he was the resident journalist at the Australian Medical Association. He was never the high flyer that some of his fellow journalists who moved in the upper echelons of political influence were, but he was one of the first to recognise that there was a niche in health journalism beyond the learned medical journals.

He may not have been the first but publishing and editing Healthcover, a journal devoted to health policy in the 1990s was a bellwether for journalists who have trod the same pathway since. Ron was an edgy character, loyal to his employers but with a honed critical faculty, a person who knew his limits. He had a rare shorthand ability to rival that of a Hansard reporter, which enabled him to accurately and precisely record what people said rather than just printing the media handouts. Thus his was a refreshing approach to which I was privileged to assist.

His passing is a time for appreciating Ron’s contribution to health journalism and then moving on.

Can I jump puddles alone?

I wrote this first when I was severely disabled with pain, stiffness and weakness – the result of a presumed autoimmune disease. Mr McGuire’s recent ill chosen words reminded me that some able-bodied, articulate people can demonstrate insensitivity and in turn need to be reminded – although he seems to be awash with contrition.

Four years after first writing this reflection, although my health is much better, I am still dependent but with flashes of independence and thus hope.

When you go from independence to dependence in a relatively short period, it is bad enough.

But consider the case of this man, when the change was instantaneous – the result of trauma on a rugby field – and persistent. My condition pales by comparison

This young man was determined to walk at his graduation ceremony. His was a high profile accident and the media were there in spades.

The background to the television news report was that the young man had been severely disabled – the word paraplegic was not mentioned – only his determination to walk to receive his degree and, almost incidentally mentioned in the report, he had a wife. When the picture came on the screen he rose out of his wheelchair and with his wife supporting him as though he were a statue, he tottered a few steps across the stage. No, he had not walked – his carer had borne his weight and even though she was half his size, held onto him while he made the small distance across the stage. Then the news item was over – no attention to the wife’s efforts – no watching him struggle back to the wheelchair or more probably the wheelchair moved into position to avoid the need. He had said he would walk to receive his graduation certificate. It was the gritty devotion of his wife – his carer – that enabled him to do so. Good luck – his family could only wish that he would improve; but what struck me was the essential importance of the carer and how little reference was made to her in the news item.

Likewise, had it not been for me having my wife and others to care for me I would not have been able to continue to work at that stage and full time.

I hate being in a wheelchair. Not that I am in a wheelchair that much, but when I have to move more than 100 metres it becomes very difficult without one. What is wrong with the wheelchair? Nothing. I have been surprised by the comfort the modern wheelchair affords.

However, you become a different human being in a wheelchair. Until you make it clear that being in a wheelchair does not mean that your IQ is automatically halved, you tend to be ignored or treated as a child. I remember sitting in a wheelchair and being confronted by a small boy in a stroller. We were at a similar eye level and he with the ingenuousness of a child stared at me. To which I responded “ Son, see what awaits you.” His parents laughed but I wondered whether they continue to deny the five year old the use of his legs.

The other is that you exist in a forest of legs belonging to the able-bodied. You become acutely aware of that facility to walk, which you considered as an automatic right of homo sapiens. It is compelling to watch the easy facility of movement that you have lost. It brings home the sheer complexity of the evolutionary trail watching the striding young man or woman clasping the iPhone to the ear. There is plenty of time to observe when you are waiting in a wheelchair.

This waiting time is emphasised if you happen to be one of those people who has been both impatient and fidgety. In a wheelchair, impatience is not a wise strategy. Gesturing irritably – especially with a walking stick – is counterproductive!

Likewise, you cannot act on impulse – jump up and do something. Getting to your feet is a considered exercise. In other words, it is the carers who count in such an environment. Their understanding of the level of background support required is crucial.

This was brought home to me when I decided to walk along the Seattle waterfront from the ferry terminal to my hotel. At the time the Seattle waterfront was undergoing massive reconstruction and therefore hailing a cab was difficult and I misjudged both the distance and my capacity. “The little boy” had decided to get out of his stroller. For about 50 metres with two sticks it was bearable. However, as I moved forward the uneven asphalt became jolting potholes; walking down improvised inclines, minor to the able-bodied, become challenging ski runs. I struggled, and my carer kept watch for an hour, hovering and supporting, without saying how stupid I was. This was my “puddle” moment.

The occasional person, invariably a young woman, stopped to ask whether I needed help. For an hour I moved along, away from the dusty, sulphurous fumes and clanging steel of the waterfront, onto quiet civilised pavement. The hotel was in sight, and as you do when you walk with sticks, your eyes are mostly directed towards the terrain. What made this segment better was the line of copper beeches, which I could count as I passed each one. I remember when I ran those inaptly named “fun runs” and I was getting tired, it was the next telegraph pole in the street or on the highway, which was the marker of achievement.

My carer who had been ever present suddenly asked whether she could go and get the wheelchair from the hotel since the footpath was paved and the hotel was not more than two hundred metres away. She had picked the right moment. I agreed and she disappeared as I slogged on with the vain hope that I would get there before she could bring back the wheelchair. The definition of bliss is being propelled in a wheelchair up and through the hotel foyer to the bar for a cold ale.

Caring, as I have found out, and the interaction with the person in care is something you see, but unless you are in the situation, you will never feel the importance of that interaction.

However, caring is not the exclusive preserve of some professional group or a financial benefit enshrouded in impenetrable regulation. It is a basic tenet of our society.

It is up to those disabled but articulate, to continually advocate for a better deal, not only for the disabled, but also for the carers. Neither the carer nor the person being cared for live in parallel. However, the challenge remains of how best to translate that interaction between those who have the interpersonal skills intuitively and those who need to learn the skills to improve the interaction. The internet seems to be full of exhortation as to what is best for the disabled, but there does not seem to be much room for interactive comment.

Yet 272,000 carers are under 25 years. I have grandson who was then 14 and who, without prompting, brought me a chair when I needed to sit down. He knew without any words being exchanged what was wanted, because he was paying attention to his environment rather than a piece of technology.

As against this was a young girl of similar age, head down, concentrating on her texting who pushed past me into the lift. Suddenly there was a scream of anguish as the door closed on her inattentive self. It was fortunate that it was not a railway crossing – or a puddle, which turned into a fathom-deep pond.

The allusion in the title is to the Australian author, Alan Marshall, a useful text for us all. He did learn to negotiate that fathomless puddle. Has government with this recent budget done the same thing?

Mouse Whisper

Heard in the Louis Vuitton emporium in Tibooburra: What is better, a retail politician or a wholesale disaster?

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