Who Am I?

It’s now been 3 ½ years since my accident, and as time marches on, I’ve been trying to make sense of my new identity. My son’s girlfriend, Kate, has only ever known me in my chair. To her, and to everyone I meet from here on in, I can only ever be an old man in a wheelchair. Jeremy was 16, and Jacob 13, but at the time of the accident Lachlan was 10. When he emerges into adulthood, what memories will inform the image he has of his father?

This begs the question of what is meant by identity. In previous generations, identity was a familial and communal concept – we understood ourselves (and were understood by others) as being sons and daughters, brothers and sisters – and members of a tribe, a province, a kingdom, a religion. This was sometimes oppressive, as individuals were trapped and controlled by their genealogies. But if modernity has meant freedom from such control, it has also left us bereft of the meanings and values that direct our life. In the place of family, we have come to understand ourselves by what we do. When we meet someone, we don’t care about their last name or ask about their parents but, rather, we want to know what they do for a living, for a sport, for entertainment.

In my mind, then, I’ve been a Christian scholar/surfer – and I have always been proud of the juxtaposition. What we expect of an academic, especially one who teaches (boring and abstract) theology, is a tweed jacket, confused fashion sense (sadly true of me), and someone who prefers chess to sport (not that there’s anything wrong with that). Being the egoist that I am, I’ve always loved the fact surfing shattered that expectation; so sport was central to my self-understanding (as it is to my parents and brothers). More than that, my identity as father and husband was also informed by my physicality in performing these roles. While I was never a successful handyman, I was at least a “lover and a fighter” – by which I mean to say my manhood could not be divorced from my strength. I was Elly’s “muscle”, and my boys partner in adventure (a fact that ultimately proved my own undoing).

So who am I without these things?

Actually, I’m not without these things. As Phil Smith notes, “we create stories in order to understand who we are, and what we are, and how we are, in the world (P. Smith 2013, 5).” Narrative informs personal identity by expressing our perceptions of the past and present, and capturing our hopes, fears, and vision for the future. So in telling my story, I’m reminding myself of who I am, not so that I can get depressed about a lost self, but so that I can take control of today, and make tomorrow meaningful.

Kate (and maybe Lachlan) will know little of the scholar/surfer, but I can still be more than just an old man in a chair. Of course I am that, but that’s not who I am. Make sense of that if you can.

don’t spend the day in my wheelchair!

one of the more common assumptions about wheelchairs is that they are entrapping. You will often hear it said, “you must long to escape that chair?” Or, alternatively, a well-meaning person might make the observation, “every able-bodied person should spend a day in a wheelchair to know what it’s like to live with disability.”

In fact, the wheelchair is a liberating device – and far from entrapping me, gives me freedom.  yesterday, on my way home from work, my wheelchair broke down halfway up the hill. I was trapped, and my poor son Lachlan had to push me home – all 260 kg of chair and body (champion). at least I’d made it home, but the next day (today as I write) I needed to make an important meeting at midday in the city. so, at 8 AM I called wheelchair service to arrange a fix. I was fortunate that a repair man was available,  and he came to fix the chair. By 10 o’clock, he’d finished and left and I was up and ready for my meeting – only to discover as I was heading out the door that the error had repeated, and I was going nowhere. So back to bed, meeting missed. And here I wait for who knows how long?

My point is, that the chair is my liberation. It does give me some complications. I can’t transfer, so I’m stuck in it.I can’t get in to a normal car, and there are some buildings with steps that are inaccessible – personal homes are the worse – with more than 80% disability unfriendly. but aside from minor inconveniences, I love my chair. Think of the following:

1. Speed – I can get around at 10 km an hour, which makes you lot with legs seem slow. on a pavement, I can be downright dangerous to people who walk with their heads in their phone.

2. Carry – I might not have much arm strength, but my chair makes a handy (pun intended) trolley. I’m brilliant with grocery bags, and make light work of a picnic.

3. Seating – I never have a problem finding a seat. Last on to a packed train – no problems.

4. sleeping – my chair tilts back almost 90°. That means I have a bed with me wherever I go. I’m notorious for falling asleep on the train, having to be woken up by the guard when I arrive at my destination. other passengers are downright jealous (especially retirees and mothers of young children).

5. barging – I never have problems making my way through a crowd. My chair has a steel foot plates and acts like a snowplough when people are in the way.

6. Entertaining – my nephews and nieces love sitting on my lap and going for a ride. They grow out of it of course, but the young ones think it’s brilliant. When a ride is on the offer, I’m the favourite uncle.

If you want to know what it’s like being disabled, spend a day in my bed, and get hoisted and showered by my carers,  and tie your legs together halfway up a hill. but don’t spend a day in my chair, because I need it.

Jeremy just a little bigger than my nieces

Jeremy just a little bigger than my nieces

a bed wherever I go

a bed wherever I go

Journal article: Grieving My Broken Body

I recently received notification that my latest scholarly article has been published in the journal of Disability and Rehabilitation, “Grieving my broken body: an autoethnographic account of spinal cord injury as an experience of grief.”

I have permission to publish on my website the version submitted to the Journal, which is available HEREAnyone interested in the a citable version can contact me directly, and I can give you a link for the final published copy.

I think this is one of my or accessible articles. The abstract is a little dry, but it will at least give you some indication of what the article is about.

Abstract

Purpose: For good reason, the trajectory of contemporary research and therapy into rehabilitation following spinal cord injury (SCI) has moved away from focusing on the pathology of depression, to highlight the contribution of resiliency, optimism, and hope to long-term well-being. This paper complements this literature, exploring the analogous links between the losses of spinal cord injury and the experiences of the grief that accompanies the death of a loved one.

Method: The paper uses autoethnography, drawing on the authors’ writing about his own experiences as a C5 (incomplete) quadriplegic, to identify a correlation between the stages/symptoms of grief and the journey of rehabilitating from an SCI.

Results: The paper highlights the ‘wild’ and ambiguous reality of adjusting to an SCI, and so challenges the dualist tendency to assume that people are either resilient or weak, successful or unsuccessful in their recovery. It recognises that adjusting to an SCI involves complex swings in emotion – sadness, anger, and melancholy, alongside hope and determination.

Conclusion: Drawing on strategies of grief therapy, the paper suggests that constructing and reconstructing the story of one’s own life is essential to learning to accept and live with an SCI.

Implications for Rehabilitation

  • since the losses accompanying SCI are analogous to grief, grief therapy strategies that recognise the complex and ambiguous nature of recovery can be part of rehabilitation
  • therapy should encourage people to construct and reconstruct narratives – life stories – that help them mourn their loss and make sense of their new lives
  • the loss of an SCI is especially potent following return to the community, so storied therapy should continue beyond the period of the in-house rehabilitation.

ARTICLE AVAILABLE HERE

Consent to die following SCI – responding to the Tim Bowers story

As posted on ABCs opinion site, The Drum – see here

The global news last week featured reports of a paralysed man, Tim Bowers, who chose to turn off his life support system.

Bowers’ injury was a severe one – he was a C3 quadriplegic with the possibility of lifelong intubation. On the day after his accident, doctors woke him from an induced coma and asked whether he wanted to continue life-support. He apparently replied, with a shake of his head, “no”, and after spending a few hours with his family, his life support system was turned off and soon after he died.

While I understand and sympathise with Bowers’ decision, I am appalled that the doctors gave him the option to end his life at that time. Admittedly, Bowers had previously said to his wife that he didn’t want to spend his life in a wheelchair. But this view merely betrays the fact that he shares the common able-bodied assumption that life with a spinal cord injury (SCI) is not worth living. Clearly, his family and doctors (as well as the global news media, which generally reported on the event without raising any concerns) shared the same opinion.

At stake is the issue of medical consent. Of course, people should be given the right to make decisions about their own future. But for consent to be meaningful, the patient needs to be fully cognisant of all relevant facts. In this case, there is simply no way that a patient – one day after a horrifying accident – is in a position to know what it might be like to live with a severe SCI.

In fact, research on quality of life (QOL) for ventilated quadriplegics suggests that “There is relatively strong evidence that people with high-level ventilator-dependent SCI rate their QOL as relatively good in the years after injury” – and that life satisfaction increases with time. And this is to say nothing of the fact that many people experience substantial recovery in the weeks and months following the initial accident. Just because someone needs ventilation in the early weeks does not mean that it will be permanent. Of course, it may be – but even then, it is possible to live a life full of accomplishment and meaning.

Of course, this life is difficult – indeed, impossible – to envision one day after a horrifying injury, lying on a bed, plugged into a spider web of tubing, unable to move. And because it is impossible, then so is meaningful consent.

In my view, Tim Bowers’ doctors have failed in their duty of care, and it makes me wonder how this has come about. Is this decision (and its widespread endorsement) an indication of a loss in our appreciation of the sanctity of life? Is it part and parcel with the push for legalisation of “the right to die”? Has economic pragmatism and cost benefit analysis prevailed?

I hope it’s just an aberration. If not, then quadriplegics like me (I am a C5 non-ventilated incomplete quadriplegic) might be the last of our kind. Indeed, I wonder how many inspirational global citizens would not be around today if they and their families had been asked in the early days and weeks of their recovery, “Do you want to go on living like this?” Christopher Reeve? Teddy Pendergrass? Countless unheralded but inspirational men and women?

At some point, almost all of us would have stolen a glance at a quadriplegic and mumbled to our partner/friend, “He’d be better off dead. If that happens to me, ask the doctors to pull the plug.” It’s a natural reaction – fear of the unknown. But it turns out that the unknown of SCI, when confronted head-on, is not as horrifying as it first appears.

Yes, life with quadriplegia (like countless other disabilities) is challenging and sometimes bloody horrible. And yes, ventilated quadriplegia would be especially difficult. But it is still life, and so it is open to the pursuit and experience of joy, love, beauty, accomplishment, and meaning – provided one has the courage to face up to the long process of rehabilitation, and provided doctors, and society as a whole, inspire newly injured people to see that a full life is possible.

It is in failing to provide this inspiration that the medical staff attending to Tim Bowers failed.

Trains, sex, buses, an ambulance, the emergency department, and CT scans

Shane Clifton, crashed on the floor of the bus

Shane Clifton, crashed on the floor of the bus

My day yesterday involved trains, sex, buses, an ambulance, the emergency department, and CT scans, so it was relatively exciting, and since I’m going to tell you upfront that I’m okay you, there’s no need for you to worry as you read on.

I had to be in Parramatta for a class at 9 AM, which meant a far too early wake-up, and a morning preparation so rushed that I didn’t get a proper shower, and so headed out the door with my hair looking a little like John Travolta in Grease. The Ingleburn to Parramatta train ride has become boringly straight forward, except today. When changing trains, the ramp from the carriage to the platform wasn’t held firmly enough in place by the attendant, so I ended up with my front castor wheels jammed between the train and the platform. No doubt, the five-minute delay needed to get me unstuck annoyed impatient commuters, but I am used to this sort of drama, and before long I’d changed trains and made it to Parramatta, and then to work.

My class was on sexual ethics. In Christian contexts, this is a topic fraught with controversy, and as we negotiated subjects that included dating, masturbation, and the ideals of transcendent sexual unity, I felt like shouting, “stop overthinking things. It’s just an orgasm, and you should enjoy it while you can. I’d give anything to be able to experience that feeling again.” But I restrained myself, and the class was fun; an open and engaging discussion, about a topic dear to all of our hearts.

The lecture went through to midday, at which point I found a quiet corner in a Gloria Jean’s cafe, and tipped back my chair for a kip – one of the advantages of an electric wheelchair is that a bed is always present. I badly needed the rest, since my schedule for the day was unusually busy. Following the morning class was an afternoon meeting at ParaQuad, where I had been invited to sit on a steering committee for a project set up to develop training programs for personal care at home. The ParaQuad offices are in Newington, and to get there I needed to catch a bus from the Parramatta terminus. When it pulled up, a crowd of people swamped inside, leaving me to wait for the bus driver to lower the ramp and usher me on. Bus corridors are narrow, and it takes no small amount of practice to negotiate the chair round the corner, past the driver’s compartment, and into the designated wheelchair accommodation. This is near the front of the bus, with seats that fold up to make room for the chair, which is parked facing the rear. once in place, it wasn’t long before we were under way, and I was able to lose myself in dreams of adventure, listening to an audio recording of The Count of Monte Christo:

“Life is a storm, my young friend. You will bask in the sunlight one moment, be shattered on the rocks the next. What makes you a man is what you do when that storm comes.”

From Parramatta, the bus headed east toward the city along Victoria Road. You can tell when a driver is in a hurry by the extent to which aggressive acceleration and braking force you forward and then reverse-fling you into the backrest and headrest of the chair. But the journey today, while fast, seemed relatively normal, and I was relaxed and unconcerned. The crisis came without warning, as the bus looped left around a sweeping on-ramp from Victoria Road to the overpass on Silverwater Road.

Before I had any chance to react, my chair tipped and I fell to the side, smashing my head on the seating opposite, and falling onto the floor. It must have happened in a flash, but I can remember every instant of the fall. It was one of those moments when time really did seem to slow, and I experienced the gut wrenching sensation of a fall that I was utterly helpless to prevent. I didn’t lose consciousness, and I ended up lying crumpled up on my side, half on and half off the fallen wheelchair, with my face flat against the floor. I screamed in panic. The passengers, watching on in horror, shouted to the driver, and the bus pulled up.

Immediately, a large and smartly-dressed man (who later introduced himself as Michael), rushed over, made sure I was okay, and called 000. He was given firm instructions that I wasn’t to be moved but, rather, to wait for the arrival of the ambulance.

So I waited, with my face squashed against the dusty and unforgiving floor, and my body twisted up, like one of those oddly bent chalk drawings placed at the scene of the crime on TV procedurals. Memories of 7 October 2010 flashed into my mind, and I went from being panicked to feeling pathetically humiliated; a circus attraction earning the curiosity of the watching crowd. Before long, though, my mood switched to one of resignation. This sort of experience seems to be par for the course of sci, and the way to get through it is to be patient and relax. What I can’t change isn’t worth worrying about, and so I took the opportunity to shut my eyes and have another rest.

The ambulance seemed to take an inordinate amount of time – although I suspect my sense of time was out of kilter. As I was lying there, I heard the bus driver talking to the passengers, defending himself:

“I didn’t strap the seatbelt to his chair, because most of them don’t like it.”

“I was only travelling at 30 km an hour, the normal speed – I wasn’t driving too fast.”

“I will probably be put on report and might be placed on suspension.”

This self-interested justification irritated me, so I interrupted:

“Instead of spending this time worrying about yourself, why don’t you get your priorities right, and show some concern about the quadriplegic lying on the floor of your bus.”

He gave a quick apology and that was the last I heard from him. And still, I waited. I’m pretty sure it was half an hour or more before another bus turned up to take the onlooking passengers the rest of their journey. I guess I should have felt a little sorry for the chaos I’d created, but I struggled to feel any real sympathy for them and their missed appointments. For that matter, it looked like I was going to miss my own meeting. I figured, at least, that I had a good excuse.

The police arrived, and then firemen, and about 20 minutes after the fall, the ambulance roared in and the paramedics took charge. The team leader introduced herself as Claire, and while checking my vital signs she chatted and joked and so made me feel at ease. It seemed likely that I was okay (well, I was still a quadriplegic – the fall hadn’t cured me – but I didn’t seem to be any more damaged), but Claire wasn’t taking any chances. Since I was paralysed, I needed to be treated as any other person subject to a sci. The difficulty was that my weirdly contorted position, among the poles and seats of the bus, made a puzzle of the task of straightening me up. But a strategy was devised, beginning with the placement of a neck brace, and then a series of small and cautious moves that eventually saw me lying flat on my back on a gurney. Thereafter, the task of getting me out of the bus and into the back of the ambulance was relatively simple.

Once settled, I was briefly interviewed by a police officer, and then asked whether there was anyone who should be apprised of the situation. Truth be told, I was reluctant for them to contact Elly. I knew that a call from the police would cause her panicked heart palpitations, and because I thought that I was probably fine, I contemplated keeping quiet, going to hospital for tests, and then trying to find my own way home. I quickly realised that not only was such a strategy stupid (really, did I imagine I could get myself home after an accident like this!), but that Elly would murder me if I didn’t make sure she was notified. I instructed the officer to make the call, but to be as gentle and upbeat as possible.

At about 3 PM I took my first ride in an ambulance (my previous journey to hospital was in a helicopter), and I was ushered into Accident and Emergency at Concord Hospital. An hour or so later, I was transferred to radiology, and was given a CT scan of my head and neck. When I was returned to the ward, Elly was there waiting. This really did feel like old times; me staring at the ceiling with a neck brace, and Elly sitting alongside the bed. It must have been around 6 PM when I was given the all clear, and Elly took me home.

Later, I was talking to my brother Kurt, and he declared that the whole thing was set up. I have almost finished my memoir (looking for a publisher), and he reckons that this mini emergency had been planned to give me an exciting way to end the book. “Finish it on a cliff-hanger,” he said, “so that everyone will want to read the sequel.”

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

The Intouchables: film review

**POTENTIAL SPOILER ALERT** (although the film itself gives away its end in the beginning, concerning itself with character over suspense)

First, a little pedantry; the term “Intouchables” is not a spelling error but the French equivalent of “Untouchables” [and yes, it is a foreign subtitled movie given limited distribution in Australia]. In the context of this film the title seems to intend a double meaning. The lead character, Philippe, is a C3/4 quadriplegic with no movement from the neck down and, consequently, no capacity to reach out and touch. More importantly, both Philippe and his carer Driss are outcasts; the latter a poor black, paroled (and despised) migrant, the former a pitiable paralytic – each in their own way untouchable.

The plot is a simple one. The wealthy Philippe hires Driss as a personal carer, notwithstanding the fact that he is patently unsuited to the task. To say nothing of his criminal background, he has no training or experience in the field and, as soon becomes obvious, his knowledge of spinal-cord injury (SCI) is laughingly basic [Is there really anyone in the world who does not know that paralytics normally have no/little feeling? That notwithstanding the absence of pain it is a bad idea to pour scalding hot tea onto a persons' legs?]. He is hired on the sole basis that, from the very beginning, he responds to Philippe without pity, even without compassion. He jokes, teases, challenges and questions Philippe in a refreshingly unselfconscious way, no topic out of bounds (even quadriplegic erotica).

At one level, Intouchables follows a predictable and stereotyped pattern; wealthy white man is brought together with poor black man, cultures clash, white man introduces high culture to unsophisticated black man, black man introduces funky dance and lawless joy to stuck up white man, both transformed. As is typical, it also ignores the obscenity of the white man’s wealth in the face of the black man’s poverty (and, as I’ve noted elsewhere, without owning up to the fact that disability and poverty often go hand in hand).

And yet, at another level – and this is what counts – the film is sheer delight. What it has going for it is a number of rich characters, as well as insight into the unique world of quadriplegia from the perspective of both the person with an SCI and his carers. Obviously, the story resonates with the experiences of my wife and I, leaving us grateful that my injury was not as severe as that suffered by Philippe (there is almost always someone worse off than yourself!). But if the response of other patrons in the cinema was anything to go by, its appeal is universal and its story inspirational. And as much as I hate that overused word, the film’s encouragement comes not from the heroic character of either Philippe or Driss, but from the affirmation that friendship is what really matters in life.

Four stars.

Travel to Canberra: lessons learned

The journey to Voices for Justice last weekend was my first trip away (other than to my parents place) since my accident in 2010 (quite a change for someone used to yearly trips abroad). We spent two days one night in Canberra, after which I have the following observations:

  1. packing: it is staggering how much needs to be taken for an overnight trip. Aside from clothes and medical paraphernalia, we needed to transport a commode, hoist and air mattress. This requires some manual labour and jigsaw puzzle car arrangement, performed by Elly and Kristy (my carer) – a gender role reversal that I wasn’t sure whether to be grateful for or emasculated by! In any event, it was fortunate we were travelling without the boys as the middle seat was taken up with junk. In future I suspect we will need to hire equipment, the joys of further expenditure.
  2. Hotel: our accommodation was booked by a friend and careful attention was paid to ensure that the facilities were accessible. It turns out that what able-bodied people describe as accessible is not always so. The room had a disabled bathroom, but there was an inch step from the carpet to the titles. This does not sound like much, until you become a 5 foot two carer (Kristy) trying to push a commode filled with a 99 kg body. In fact, the motel was full of inclines that were difficult to negotiate and narrow corridors. At least this provides some entertainment, and the occasional ding in a wall is the price the hotel pays.
  3. Bed: a major challenge was that there was no clearance underneath the bed to take the hoist. Elly and Kristy had the precarious task of wheeling the hoist and I to the side of the bed and then tipping me in – trying to avoid squashing me in the process. Once in there was the possibility that I was going to have to stay there for the rest of the weekend, but Elly imagined a creative solution. A bit hard to describe in words, but it involved the corner of the bed, dragging me around and sitting me up. In any event, we managed to get me up.
  4. Change in chair: once up and in the commode we realised that after the bathroom I am normally returned to bed to be dressed. Since that seemed like a bad idea, we thought it might be worth experimenting whether I could be dressed in a chair. Remarkably, we learned a new skill. This proved to be extraordinarily useful. On the Tuesday morning after my return home I was dressed and ready to go to work only to have that joyous experience of wetting my pants (yes, mum, I know you taught me not to do that a long time ago). Rather than bother returning me to bed for another change we tried out our new skill – the Superman change in the chair. My wife took a photo which is embarrassingly funny enough to share:

All in all we enjoyed the trip. Going there and back in two days was too much for everyone – we shall leave longer next time. We shall also spend the money on a ritzier motel. Thanks to Kristy for tagging along, and to Micah challenge for the invite.

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the non-disabled depending upon the disabled

I spend much of my day asking for help. Coming home from the train station yesterday I was cold and so stopped to ask a young lady to get my beanie and mittens out from my bag. She looked at me strangely and said, “can’t you get someone else?” when I noted that she was nearest she again refused to help. it is a response that I get surprisingly often. initially it embarrasses me (I must look like a creepy pervert) and then it infuriates me. I suggested that she think of her failure to help me every time she watched the news of the Paralympics, and then made my way to ask someone else.

With this in mind it was interesting to come across the following quote in a book by Amos Yong, Theology and down Syndrome: Reimagining Disability in Late Modernity:

  • Sharon betcher notes (2000: 93), when she says as a person with a disability “excuse me, i need your help”—“in that moment the frozen wall between us topples; in your converted countenance, i discern that, as if in the twinkling of an eye, you have been changed. For the 45 seconds i needed you, you did not feel extraneous to the world. Sometimes i will ask for help just to save you, the nondisabled, from superficiality and irrelevance—just to save us from your own worst fear.” in that moment, god’s saving grace is made available through “the stranger” or those on the margins, and we can receive this grace or not depending on how we respond. This is the criterion dividing the sheep and the goats at the judgment: “just as you did it to one of the least of these who are members of my family, you did it to me” (matt 25:40). Hence, the question concerns not the dependence of the disabled on the nondisabled but the other way around: the nondisabled are dependent on the disabled, whom god has chosen to be a means of saving grace. (page 188)

This is such a profound paragraph. And it has me wondering, what does that mean for the people who so often say “no” to the ‘creepy’ me when I ask for help? or much more importantly, what does it mean for all those brilliant people who help me time and again.