One of the things that stood out to me in America, and especially in Florida, was that footpaths were clogged up with wheelchairs and mobility scooters. What was surprising is that it wasn’t disability or old age that was keeping people in their chairs, but obesity.

Now, I’m aware that making such an observation is potentially judgemental and mean-spirited. There could be any number of reasons that an overweight person relies on a mobility scooter or wheelchair, and it’s not always clear which comes first, weight gain or injury/disability. Fat shaming is as bad as any other form of discriminatory abuse, and it’s made worse by my hypocrisy; by the fact that I’m a long way from being a Victoria’s Secret model myself. Whatever its cause, genetic or contextual, I suspect that most of the fat people getting about in chairs are as trapped in the psychological despair and cultural shame of their obesity as I am by the physical constraints of spinal cord injury. Even so, I confess that seeing people squeeze into chairs bugged me. I’m not sure whether I resented the fact that people had ‘chosen’ (as if anyone really has free choice) to live in a chair, and by doing so wasted the opportunity to exercise by walking, or that I was projecting the fear of my own weight gain upon those who shared my mode of transport.

DSC03503Body pride (and its opposite, body shame) is really a strange conceit. We don’t make ourselves or shape our own form (even though we might have some influence on our body’s condition and tone), so we’re not really in a position to take credit for our own beauty or ugliness. Even so, pre-injury, I was one of those people secretly proud of my body; tall, slim, relatively athletic – I didn’t look too bad for a middle-aged man (at least that’s what Elly used to tell me). Since my injury, though, I’m loath to look in the mirror. One of the odd consequences of spinal injury is that my abdominal muscles have wasted away, resulting in a potbelly, and this is made worse by the fact that it’s difficult to exercise. As a result, I look as though I enjoy too many beers after work. While a round stomach may be beautiful on pregnant women, it looks hideous on me – especially as it sits underneath love handles and a sunken chest. Seriously, I try to keep my eyes shut when there’s a full-length mirror and I’m naked in the bathroom (pity my poor carers who have no choice but to look). I’m not generally self-conscious, but I hate my gut.


Seeing all these weighty people melting into mobility scooters has reminded me afresh of the danger of life in an electric wheelchair; that lack of movement and exercise puts me at substantial risk of obesity. It’s one of those frustrating ironies of life – that one of the things that spinal cord injury hasn’t stole from me is the ability to enjoy good food and drink, but it’s precisely in this area that I need to exercise self-control. The issue is not merely an aesthetic one. Obesity is the primary cause of heart disease, and fat people suffer constricted and shorter lives. In my case, there is the added strain that weight gain would place upon my carers, who already have the difficulty of shifting my nearly 100 kg frame. More importantly for me, research suggests that exercise (and weight gain) affects our brains. My son is studying psychology at University, and he’s had me reading books on the brain. If you’ll forgive me a lengthy quotation, In Brain Rules (a book I highly recommend), Professor John Medina notes:

A lifetime of exercise results in a sometimes astonishing elevation in cognitive performance, compared with those who are sedentary. Exercisers outperform couch potatoes in tests that measure long- term memory, reasoning, attention, and problem- solving skill. The same is true of fluid- intelligence tasks, which test the ability to reason quickly, think abstractly, and improvise off previously learned material in order to solve a new problem. Essentially, exercise improves a whole host of abilities prized in the classroom and at work.

Your lifetime risk for general dementia is literally cut in half if you participate in physical activity. Aerobic exercise seems to be the key. With Alzheimer’s, the effect is even greater: Such exercise reduces your odds of getting the disease by more than 60 percent.

All of the evidence points in one direction: Physical activity is cognitive candy.

The benefits of exercise seem nearly endless because its impact is system wide, affecting most physiological systems. Exercise makes your muscles and bones stronger, improving your strength and balance. It helps regulate your appetite, reduces your risk for more than a dozen types of cancer, improves the immune system, changes your blood lipid profile, and buffers against the toxic effects of stress. By enriching your cardiovascular system, exercise decreases your risk for heart disease, stroke, and diabetes. When combined with the intellectual benefits exercise appears to offer, we have in our hands as close to a magic bullet for improving human health as exists in modern medicine. So I am convinced that integrating exercise into those eight hours at work or school will only make us normal. All we have to do is move.

This is seriously challenging stuff, especially for those of us who spend their days in an electric wheelchair, but value the health of our brain. Most people at least manage to get incidental exercise, walking around the house and between venues. But if I put in the typically recommended half hour each day walking the dog, I don’t gain much from the effort of pushing my wrist against the joystick.

Even so, I can exercise. At home, I can strap myself to the arm crank and pedal. I also have a multi-exercise weight contraption that I can use with the help of my kids (Jake is a hard taskmaster). It’s honestly not much fun – I have to fight through spasm and I don’t seem to make much progress. But when I’m home, I’m pretty diligent, getting into it most days, probably because I’m scared stiff of getting any fatter. But I didn’t exercise while on holidays, and I must have set in place some bad habits, because I’ve not done much since returning home – and I’m feeling a little guilty.

As I’m writing this blog, I’m reminded of several images; being squished onto an elevator with a middle-aged woman in a mobility scooter wearing a Hawaiian shirt with enough real estate to give me a panoramic view of pine-tree lined beaches; a man on an airplane who was so large he travelled with an attendant carer; a queue of scooters and chairs waiting for a lift for 20 minutes while the adjacent stairway beckoned. It has given me incentive enough to eat wisely today, and to return to my habit of daily exercise.. In fact, I think I’ll probably miss the mobility scooter trend, since I’ll have to find motivation to watch my diet and exercise elsewhere – I might even have no choice but to open my eyes and look into the wretched bathroom mirror.


frontline vs administration and advocacy?

In last week’s Sydney morning Herald, Michael West’s article, A taxing tale of two peak bodies, notes:

Four days out from Christmas, Blind Citizens Australia (BCA), Deaf Australia, Homelessness Australia and Down Syndrome Australia learned they were to be subject to federal government funding cuts. New Social Services Minister Scott Morrison assured concerned parties that frontline services to the disabled would not be cut, just grants to these and other organisations advocating for the homeless and the disabled.

West goes on to compare this funding cut with the concurrent decision to back away from proposed tax avoidance reform that would have netted more than $600 million from multinational companies, after lobbying from big business peak bodies. The hypocrisy of this decision should be obvious, but let me spell it out.

One of the more mischievous methods of justifying funding cuts is to claim that they will be targeted only at administration and advocacy, and that frontline services won’t be affected. The idea is that all that is being done is to cut down on government waste, and so ensure that our hard earned taxes are properly targeted and spent efficiently.

You hear the same argument used when people consider what percentage of their donation is given directly to charity recipients, and what percentage is used to administer the charity itself. The ideal, it is assumed, is to focus on the former and eliminate the latter. In fact however, frontline services are not in a tug-of-war with the administration of charities but, rather, the two go hand-in-hand. That is to say, effective servicing of recipients of charity is utterly dependent upon the quality of administration. This is not to say that all charities operate at peak efficiency. The solution to waste, however, is not to cut funding, but to conduct audits and help organisations to implement high-quality policies and procedures (another important administrative cost).

I have no connection with and very little knowledge of the organisations targeted by the current round of government cost-cutting. What is certain, though, is that people with Down syndrome, along with those who are blind and deaf, will be negatively affected by cuts to the agencies that provide them with frontline services and advocate on their behalf.

In my view, advocacy is especially important. Since disability is as much a social as it is a physical and intellectual experience, by definition, people with disabilities are socially marginalised, and generally without a public voice. One of the key purposes of disability support groups is to advocate on behalf of their members, and so to ensure that governments and the wider society remember and prioritise the well-being of those among us who are especially vulnerable.

The value of advocacy is proven by the success of big business in having politicians eliminate the mining tax and chicken out on the proposed reforms to the taxation of multinational companies. In this light, the cutting of funding to Blind Citizens Australia, Deaf Australia, Homelessness Australia and Down Syndrome Australia  (among others) is an ominous sign. In cutting their funding we are not only impacting upon frontline services they provide; almost inevitably we are making them vulnerable to future cuts.

After all, with the advocates out of the way (or at least hamstrung financially), who will there be to make the case for disability when next year’s budget comes around?


Splash mountain
Splash mountain: Jeremy, Kate, Elyssa, Lachlan, Jacob.

As you might have guessed by the length of time between blog posts, I’ve been away, first teaching a class in New Zealand, and then on holidays. In early November I taught at Alphacrucis in Auckland, and then shared my story at St Luke’s Church in Mt Maunganui (boy, would I love to live there!). I returned home for a week before travelling to the US. I’m not going to bore you with a detailed travelogue. It’s enough to say that I was roaming with a circus (Elly, Jeremy and Kate [GF], Jacob, Lachlan, and Elyssa, my carer). This was our first real holiday since the accident, we had a great time. I’m aware that disability is impoverishing for most people, and we are extremely fortunate to be able to take such a trip. Over the course of almost a month we racked up the kilometres, enjoying our first Thanksgiving in a freezing cold New York, cuddling Mickey Mouse at Disney in autumnal Florida, cruising the Caribbean, and chilling with the hipsters at Santa Monica in LA. Holidays are great to experience and boring to hear about, and I’ve probably already said enough to have you green with envy.

Since this blog is largely about my experience of living with a physical disability, there are a few things on that front worth describing.

I’m often asked about the travelling itself; about flying with a disability (Elly, listening as I ‘type’ using voice recognition software, shouted out, “you’re not bloody Superman.” Yes, well …). I’ve flown a few times locally, and it’s normally pretty straightforward. At the recommendation of other wheelies, I usually travel with Qantas, whose staff meet me at the door of the plane with a hoist, and transfer me, swinging in a sling, to my seat. It takes a little bit of organisation, and I’m first on and last off the plane, but it’s a pretty straightforward exercise. New Zealand was to be my first international flight. I booked with Qantas, but they informed me that the 737 plane they flew to Auckland couldn’t fit my chunky 160 kg wheelchair in its cargo hold, recommending instead that I travel on a Qantas ticket with their partner airline, Emirates. What I didn’t know was that Emirates don’t have a hoist, and their staff seemed to have never dealt with a person in a wheelchair. It took more than half an hour of pushing, shoving, squeezing, and bending to eventually get me seated, but rather than describe the ordeal it’s probably easier if I show you the video.


After a strongly worded letter of complaint to Qantas, I was given very good care in all my subsequent flights. Fortunately, the lengthy international flights to the USA were on a Qantas plane, and so I had access to the hoist and knowledgeable staff. In the US, Qantas partners with American Airlines, and to be honest their planes were rickety old pieces of junk. They also didn’t use a hoist, but strong and experienced staff facilitated smooth manual transfers. At least the AA planes managed to stay in the sky, and on our flight to Florida we had a brush with fame, finding ourselves seated behind Neil Patrick Harris. Barney (How I Met Your Mother) is Jacob’s hero (not sure what this says about our parenting), and he got to shake his hand.

What else can I say about my experience of disability in the US? New York was surprisingly difficult to get around. I was pretty disgusted with the subway system, since the majority of the stations have no elevators and are completely inaccessible. When you do manage to get onto a platform, the staff may or may not know how to get you onto a train. Luckily, I have my own portable ramp, which we put to good use. After a couple of days we gave up on trains altogether, and found the bus system to be much better – fully accessible and regular. Also noteworthy was that the sidewalks were in a terrible state; full of potholes, and far too often I rolled up to intersections with no ramped verge. After hitting one crack in the path especially hard, I broke my back wheel (that, luckily, I was able to get repaired in Florida). Florida and Disney, by comparison, was an accessibility dream – a city seemingly built for wheelchairs (and mobility scooters, but that’s a story for another time).

It is also a good thing I travelled with a strong and creative carer – thanks Elyssa. We had to hire hoists in each of the cities we visited, and in every case were surprised that they were operated manually – a hand pump to get me in the air. Elyssa “enjoyed” the exercise, but started to wonder whether Americans had heard of battery-powered technology. There was inevitably problems with hotel rooms, but that’s true in Australia also. Beds were too low for the hoist to fit underneath (so we travel with bed risers). In New York the toilet was too wide to fit the commode (no need to tell you how we solve that one). And there’s never enough space in hotel rooms for our equipment (my chair, hoist, commode, and baggage provided us with a daily jigsaw puzzle). This sort of thing is part and parcel of the fun of travel, and also provides a reason to look forward to returning home.

But all this sounds far too negative, and I need to restate that we had a wonderful time, even better than I expected. One anecdote might illustrate the point. Secretly, I’d not been looking forward to Disneyland. The idea of watching on as others enjoyed rides was depressing. What I hadn’t credited was the determined strength of my boys and the girls. With the aid of a handheld sling, they carried me onto countless rides. It demanded some huffing and puffing (I’m not light and dainty), and queues of people were forced to wait while I was manoeuvred into place. But my family took on the task eagerly, and it’s hard to describe the thrill of taking rides that I’d assumed would forever be inaccessible. On the final day of the trip, the last thing we did before heading to the airport was to ride the Ferris wheel at Santa Monica Pier. I wouldn’t have dreamed that that would have been possible, but my family/circus made it happen, and so I got to watch the sunset from on high.

Well it’s good to be home. Happy New Year to yo’all, and I pray you have a rich 2015.

Huffing and puffing
Huffing and puffing
Shane and Elly Santa Monica Pier
Shane and Elly Santa Monica Pier

2014-12-18 16.12.43

2013 in review

The WordPress.com stats helper monkeys prepared a 2013 annual report for this blog.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 16,000 times in 2013. If it were a concert at Sydney Opera House, it would take about 6 sold-out performances for that many people to see it.

Click here to see the complete report.

7 October 2013 – three year anniversary

I was reminded this morning that it is the three-year anniversary of my accident. Truth be told, I hadn’t been thinking at all about the anniversary, and even now it doesn’t mean much. It’s not something I want to celebrate (yah I survived), but neither is it any more depressing than any other day.

I’m not even sure I have any pearls of wisdom to share – lessons learned in three years. But for what it’s worth, here is a random series of thoughts:

  1. I’m thankful for? Elly and the boys (and Kate) – and all my family, mum and dad (on both sides), Daniel, Troy, Kurt and all their families. my carers (Parvene, Angeline, Stephanie, the lender – and those who come and gone). They’ve walked this journey with me, and it would have been impossible without them.
  2. I’m inspired by? John Trefry, Sheree Hurley, Don Harrison – people who have lived (and flourished) with SCI for decades.
  3. I hate? my body, Internet pornography, sexism, – did I mention my body?
  4. I believe? In God and the power of love and friendship
  5. I miss? it’s been 1095 days, and not a single one has gone by without me longing for my former life. Mostly, I miss being independent, surfing , wrestling my boys, and other things best not mentioned on a family friendly blog.
  6. I enjoy? seeing my family succeed and have fun. quality Scotch. Movies that surprise and make you think. Sailing.
  7. I’m good at? critical thinking, research, and writing (at least, I’m getting better). helping students to open their mind.
  8. I’m bad at? walking, diplomacy. My wife would say “listening” – I get lost in my own world and fail to realise that Elly has asked me a question.
  9. I’ve been blessed by? The amazing generosity of people. Just when I needed it, people have blessed me with money, time (Neil), help. I have had work colleagues prepared to get their hands dirty – literally (Andrew, Narelle). People have gone out of their way to include me, my work place especially (Alphacrucis)
  10. I have learned? patience. As my mother could tell you, I’ve been a horribly impatient person for most of my life– utterly intolerant of lateness and inefficiency. miraculously, though, I have learned to take things in my stride, and not stress too much with the slowness of life with an SCI.
  11. the vice I’m embarrassed by? if I’m embarrassed by it, why would I tell you?
  12. the best experience of the last three years? The first time my thumb moved.
  13. recent moment of hilarity? Elly: “Jacob, can you feed the dog?” 10 minutes later, Shane: “Jacob, can you please make me lunch?” Jacob: “no, I’ve already fed my share of animals today.”
  14. The meaning of life? a story worth telling, full of Joy in the face of sadness, love eliminating hate, and faith and hope conquering hardship and evil.

I’ll probably think of more once I’ve hit the “post” button, but that’s enough for a meaningless anniversary.

In honour of John Trefry (2 February 1941 -14 August 2013) pt.2

this blog post continues story began here.

john trefrey 18aRehabilitation

The new spinal unit at Prince of Wales was housed in old army huts, having taken over premises that had previously been used as a military and repatriation hospital. It was 1961, John was 20 years old, and while a return to hospital might seem like a backward step, in fact this move was to mark the beginning of his journey toward adapting to life as a quadriplegic. Immediately upon admittance the injury was reassessed and a strategy for physical therapy implemented. In addition to a targeted exercise regime, John was given an upgraded chair and a better cushion (in those days they used checkerboard foam), and encouraged to sit up for long periods. Before long, he was able to spend the day in the chair and he was fortunate thereafter to have suffered a very few pressure sores.

Perhaps the most important part of his rehabilitation was the opportunity to learn from and befriend other spinal patients. There is no small comfort in living with others who share in and understand your challenges, especially those a little further ahead on the journey. And after many months in nursing home it was just good fun for John to be with people his own age. Outside physio, the spinal patients spend most of their time playing cards. John could manoeuvre a deck flat on the table, and bring the cards to the edge to review his hand. A special rivalry and friendship developed with patients from the nearby police ward, and it was this connection that enabled a uniquely lucrative fundraising effort.

Saturday’s were race days. Randwick racecourse was only around the corner from the hospital although John never made his way to the course. Instead, the spinal crew would listen to the races on the radio and have a bet with the SP bookie that made his weekly way around the wards. Illegal bookmaking of this kind was common in Australia at the time, and the industry had a well-known connection with police corruption and race rigging. It wasn’t long before recovering police suggested that the spinal ward take control of the hospital bookmaking. So, after the police ran the visiting bookmaker off the premises the boys of the spinal ward took control of the books, with the money that was raised funding entertainment and equipment. To ramp up the money raised, Peter Lloyd, the local car dealer, gave them access to his service bays. Tables were put out and set up for blackjack and other games. Word of mouth was sufficient to bring out the crowds for a Saturday night of illegal gambling. The police themselves would walk about, offer protection, and even play cards. In this instance, however, they took no cut for themselves, and the money raised went to fund updated beds, televisions, exercise equipment and money for taxis that enabled the wheelies to get out and about.

This was a period long before the electric wheelchair, so John pushed himself in a manual. This was doable on the flat although he needed help if there was any slope. Wardsmen would lift two or three spinal patients into the cab and fold up the chairs which were jammed into the boot. More often than not they visited the Pagewood hotel – another pub with an SP bookmaker! John believes that the hoteliers were happy to have the paras and quads around since the police tended to let things go when they were present.

On Saturday nights they would head into King’s Cross. Looking at John now this seems incongruent with his character but he assures me the cross was a different place. Of course it had its underbelly, but the spinal boys went to the hotel to enjoy the live music bands. It was the era before planning laws required buildings to be equipped with disabled access, but there were plenty of offers of assistance. Without much effort a couple of young strong men carried John and his friends up the stairs, chair and all. The only real worry was the impact of alcohol on those doing the carrying later in the night, but somehow everything was negotiated safely.

Illicit Company

For most of these excursions, John had company. Indeed, while paraplegics are essentially independent, as a quadriplegic John required assistance. More often than not, the troop of spinal patients were accompanied by nurses that were disobeying strict instructions not to socialise with patients. One of these “naughty nurses” was Pam. Originally from Wagga Wagga, Pam was a country girl enjoying the city, and enjoying spending increasing amounts of time with the handsome John. This gave her some problems at work. She recalls repeated instances of being called into the head nurse to be told off for her jaunts with the patients, but apparently this just made her more determined.

For a little while, the outings were just social, but it wasn’t long before Pam and John started to fall in love. There was, however, continued trouble with the matron, so to get around the issue, Pam transferred to the tuberculosis ward of the hospital. Thereafter, she merely had to sneak over the fence to visit John – and she did so almost every day, sneaking into the back of the hospital and often talking to after midnight. Pam remembers sitting up on John’s lap for hours; sometimes not realising that she was sitting on his catheter, she would get up and head home soaking wet (but happy). Three years later they were married.

I asked Pam, how she mentally transitioned from nurse to girlfriend? How did she decide that she could cope with a marriage that would require substantial lifelong care? She responded:

“I didn’t even think about it. We were in love, and it was as simple as that!” – A statement proved by their lifetime love.

During the period of their courtship, they sometimes travelled together from Randwick to Orange, riding with a friend in a black Buick. No one from home knew they were coming; his family had no telephone, and they would turn up at 2 AM in the morning, waking everyone, and turning the house upside down as a place was arranged for them to sleep. At other times, they travelled to Pam’s family in Wagga Wagga, flying with a friend who was a pilot on a DC3 Fokker aeroplane. The trip normally went smoothly, but John recalls one instance when, while exiting the craft, the platform gave way and he fell 2 m, landing on top his pilot-friend. John was concussed, but otherwise unhurt, but his friend received a broken leg for his effort.

It wasn’t too long before they decided to marry. Neither was especially religious, but Pam was Catholic, so they asked a local priest to conduct the ceremony. He refused, being of the view that Pam shouldn’t marry a quad, taking the typically prejudiced view that the marriage could not be consummated. Of course, both John and Pam were not the sort of people to listen to that sort of nonsense, and they subsequently found a priest who would bless the union. They were married at Randwick Catholic Church 28 August 1965.

They started their marriage full of love but absolutely broke; no house or car and almost no assets. This was to be John’s first time living as a quadriplegic outside of the hospital, but they had great difficulty finding accommodation. As soon as people discovered John was in a wheelchair, they refused the rental; such with the prejudices of the day. Eventually, they managed to rent a unit at Ashfield, smack bang on Parramatta Road. It was decrepit, dirty, and noisy, but they were just delighted to live together, and so transformed a dump into a home – of sorts.

Not too much time later, John and Pam approached a lawyer, and with his help were able to fight for compensation from the RTA; not a huge sum by any measure, but enough to give them a sufficient deposit that, with the help of the Commonwealth Bank, they were able to purchase a block of land and build a home at Sylvania waters. At the time (date?), this was an out of the way suburb, and little did they know that the location of their little home would become a highly desirable waterside suburb. All this time later, they still live in this little house. And there is something fitting about this plain and small dwelling, surrounded by mansions and excess; a house that somehow represents the humility and also the beauty of this family – as against the flashy pretense of so much that surrounded them.

It was during this period John got a job. These were the days of widespread prejudicial employment practices, but John found a place with the newly formed Paraplegics Association (later renamed ParaQuad) operated a workshop to provide employment for people with SCI. In the early days, the tasks they performed were relatively menial. John recalls sorting buttons, removing those with split eyes from the remainder; another time they removed rusty knobs from batteries; and again they sorted bottle tops.

While such work seems tedious, John recalls enjoying himself. He was working out what he was capable of and developing his skills. He had to determine how to perform jobs with limited function, and this required planning and inventiveness. When he was not working, he was ordinarily treated as an invalid, incapable of doing anything for himself, but the work gave him the opportunity to contribute to something bigger. Work was also a social outlet and he notes that, “I learned more from other paraplegics and quadriplegics than I did from any doctor.” Early on, the money was poor. John earned about two dollars a day, which wasn’t much more than the cost of the transport to get to and from work. Money wasn’t really the point. At a time when quadriplegia made a person an invalid, John proved at ParaQuad that he could make a vital contribution in the workforce.

In the years that followed, John took on different roles and expanded his skills. He wanted to learn to drive, so imported hand controls, adjusted to take into account the limitations of his quadriplegia,  were fitted to his car. Pam taught him to drive on a block of vacant land at Sylvania Waters – steering his way around survey markings for new buildings. In addition to hand controls for braking and acceleration, John operated the blinkers by buttons on his headrest. The strange movements he made as he went round corners apparently earned him some surprised looks from passengers. To get in and out of the car, John used a slide board, but he needed help. This meant, obviously, that he needed someone either to be with him or, alternatively, assistance at either side of the trip. His family recall the beep of his horn when he arrived home, and arguments about whose turn it was to get him out. Since most of his driving was done between home and ParaQuad, it was normally the case that Pam helped him into the car at home, and then a member of the ParaQuad helped him out at the other end. Later, John was one of the First people to have a hoist attached to the roof the car – making the transfer much more manageable.

So John was a forerunner – and it wasn’t too much time later that ParaQuad added an engineering arm to its offerings, managed by John, who could pass on his love for driving to other people with SCI. Some years later on, John also joined the sales team, answering phones and assisting his fellow quads and paras to purchase various products vital to their care. John earned a degree of fame amongst the sci community of being able to find resources to solve any problem. Altogether John ended up working at ParaQuad for 40 years before retiring. Throughout the course of his employment he moved around different departments within the organisation and did what he could in the light of his emerging talents and limitations. John never earned a fortune, nor was he a prominent executive, but he enjoyed his work – and was loved by everyone who encountered him.

Family Man

In 1970, John and Pam adopted their son Richard, and three years later their daughter Michelle. It is not my place to tell the details of the story of their family life. When presenting the moving eulogy at his father’s funeral, Richard stated that “they were the luckiest children ever to be chosen by a mum and dad.” This is not to suggest that John was a softy. Richard described unique strategies of discipline necessitated by the chair and his physical limitations – and his own revenge undoing the wing nuts on his dad’s chair. He went on to describe their families adventures, the “ripper good times” they had. He noted that although family life might have looked unusual, in fact it was completely normal. Truth be told, I’m not sure I believe him – I get the impression that their family life was too loving to be counted as merely “normal” in this age of family breakdown and divorce. what is clear is that disability wasn’t a detriment to family life. No doubt it created challenges, but with the strength of character of Pam and John, disability was transformed into the rich tapestry of a flourishing family.

The Final Years

In the Christmas period of 2010/2011 John was riding as a passenger in the back of the family’s van when, while stationary at the lights, a car smashed into their rear end. John was thrown forward and the impact upon his fragile spine necessitated a series of hospital visits. It was during one of these that I had the privilege of meeting him. John might have been in recovery, but he wasn’t one to feel sorry for himself and instead functioned as the ward encourager, telling his stories and providing hope to many of us who were struggling with a newly acquired injury. While John was able to return home – thanks to the extraordinary care of Pam – he had lost some of the hard won function that had enabled him to live for so many decades with a remarkable degree of independence. He never completely recovered, and was to suffer various injuries in the period leading to his passing on 14 August 2013.

John will be greatly missed by his family and many friends – and even by those of us who only had the opportunity of a brief (but meaningful) encounter. His has been an extraordinary and meaningful life. He leaves behind a loving wife, children, grandchildren, and innumerable friends. He also leaves a legacy. It is the promise that happiness and fulfilment is possible in the midst of hardship and disability. Of course to attain it, one needs the sort of character that John embodied; his gentle determination, his patience, his resilience, his kindness, his friendliness, his love of life.

In memory of an Australian hero.

n.b. apologies for delay in this post – circumstances of the week have kept me away the computer.

john trefrey 23ajohn trefrey 10john trefreyjohn trefrey 17john trefrey 16