trying out the new golf cart for paraplegics and quadriplegics. my thanks to empower golf (http://www.empowergolf.com.au/)
trying out the new golf cart for paraplegics and quadriplegics. my thanks to empower golf (http://www.empowergolf.com.au/)
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.
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:
I’ll probably think of more once I’ve hit the “post” button, but that’s enough for a meaningless anniversary.
this blog post continues story began here.
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.
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.
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.
I was deeply saddened last week to learn of the death of John Trefry. For those of you who have followed this blog, you will know that I have made reference to John’s story a few times. I met John and his wife Pam in hospital a few months after my accident, and the story of their experiences of living with quadriplegia was such an encouragement that I decided it needed to be recorded and somehow made available to others. So, about one year later, I went with a video recorder and interviewed John. His story was so interesting that it took two sessions, and even then I only touched the surface.
The period after the interviews turned out to be very difficult for me personally – the early years (and to a lesser extent still) at home trying to learn to live with my injury really beat me up. I did not, as a result, get the opportunity to finish my write-up of the story, nor to spend further time with John and Pam discussing it. Even so, he was very much on my mind during the tough times; I told myself regularly that if John could live such a full and meaningful life, then so could I.
in honour of his memory, Pam has given permission for me to publish my summary on this blog. I will thus dedicate the next few posts to that purpose. Please feel free to add your thoughts to the comments, and if you know John, your recollections.
The Trefry’s live at Sylvania Waters and as we pulled up at their house I couldn’t help but think of the Donahers, of 1990s BBC documentary fame. John and Pam have none of the shallow flashiness projected by that television series but they are down to earth Aussies, with the typical Aussie twang and straightforward manners. As she sees me being lowered on the hoist from the back of the van she breathes a sigh of relief, telling my colleague and carer Andrew that’s a good thing he had arrived with a disabled person. She doesn’t have much time for “normal” people, she observes; she much prefers visits from wheelies. Turning to me she is immediately aware that my catheter bag is full and so off she runs to get a bucket. It is the sort of no-nonsense generosity that sums up her character. I later learn that she is 70 years old but it is hard to believe. She is a willowy redhead, with the sort of height that gets taller and thinner in memory, and energy suggesting she is destined to be here for another three decades.
John is resting in the sun, a typical position for quads, who seem always to be soaking up the heat. Never mind that it is a typical January summer day. He wears a buttoned up shirt, long pants and woollen ugg boots. He is comfortably hunched into what looks like a new electric wheelchair, blue and shiny. Elbows resting on his lap table, his wrists hang loose and his fingers curl over. I recognise myself and it is a comforting feeling. We head inside, set up the recording equipment, and settle down to hear the story of this extraordinary life.
John was born in the New South Wales country town of Orange on 2 February 1941. One of 10 children born, he is one half of pigeon pair twins. Money was tight. John’s father had suffered for many years from tuberculosis, and could not retain employment. The family lived in a two bedroom home, with John and another brother sleeping on the veranda. It was, nevertheless, a happy home. In John’s recollections, the family had plenty of room (I wonder whether his mother felt the same), and they often made space for visits from friends and relatives. During the intermittent times when he had some respite from the symptoms of TB, his father took the family camping; heading out bush with the horse and cart intent on shooting rabbits.
Sadly, he passed away when John was 14, so he left school to work at the abattoir. His first job involved cleaning sheep carcasses and thereafter he moved into smallgoods making sausages and devon. John enjoyed his work, its collegial nature and the opportunity it afforded him to travel, transporting product around NSW country towns.
Outside of work John’s real passion was dancing. With seven sisters he had plenty of occasions to practice at home, and country towns hosted dance events most weekends. On one of these evenings John and two of his mates, Jim and Tom, decided to move on from a bush dance in Orange to another the town of Victoria. John was not a drinker and Jim, who was driving the car, was perfectly sober. It was well after midnight and about halfway there the car hit a block of concrete in the middle of the road. It was extremely unlucky. Apparently a truck had dislodged a drain, leaving it at a place that was almost impossible to miss. The car, an old FJ Holden, flew into the air and rolled into the paddock. This was in the era before seatbelts and headrests. Jim was thrown out of the car, but was mostly unhurt. Tom was killed instantly. John was left unconscious in the upturned car. He had suffered whiplash – without a headrest the accident caused his head tilted back over shoulders, breaking his neck; later discovered to be his sixth cervical vertebrae (C5/6) , leaving him a quadriplegic . Extracted from the car by ambulance officers, John was transported to hospital in Orange where the doctors had little hope for his recovery. It was the 2nd April 1959. John was 18 years of age.
In those days many newly injured quadriplegics died quickly, suffering from infections such as pneumonia. John spent four days in Orange hospital during which time nurses did not even change his clothes. When it became apparent that he had a chance of life he was shipped off to Prince Alfred Hospital in Sydney, an eight-hour journey in the ambulance.
There was no dedicated spinal unit so John was transferred to the surgical ward. He was placed in traction. Lying flat on his back, a wishbone frame encircled his head, supported by calipers that were drilled in into this skull just above the ear. This was attached by a rope to a frame that travelled to the end of the bed where it supported two sandbags. The goal was to pull the spine back into place. It was an excruciatingly painful form of treatment, especially when pressure relief demanded the patient be turned every two hours; a process that took 4 to 6 people to ensure that his neck and head was kept still. The night-time was the worst, as his screams of pain reverberated through the quiet ward.
Listening to the story, it is hard to get your head around how he made it through this period. Was he an uncharacteristically hopeful person? Was he able to imagine a better future? No, he says. All he can remember is devastation. Here he was, stuck in Sydney, with his family more than a day’s journey away. There were no telephones on the bedside table and, even if the nurses had provided him access, his family was not connected at the other end. His only visits were from the Country Women’s Association, who would help him read letters from his family and draft replies. One month into his hospital stay his sister, moved to the city and took to visiting him on a weekly basis. It was, nevertheless, a lonely experience. John was trapped in a broken body, in traction, trying to get through the day with only a ceiling for company.
John was to spend seven months in hospital, five of these in traction. As a C5/6 quad, John has control of his shoulders, neck and head. He has biceps although little in the way of triceps, and he does have wrist extension that enables him to grasp objects (called a tenodesis grip). As John has since discovered, it is possible to achieve remarkable function with this level of injury. In 1959, however, quadriplegia was considered terminal, or at least completely debilitating, so throughout his hospital stay John was given very little help in the way of physio or occupational therapy – almost no preparation for any level of independent living. Following the removal of the calipers and his escape from traction, John was taught to sit in a wheelchair. After five months of lying flat on his back, it was a dizzying exercise. It took about six weeks before he could sit up without passing out (he notes that today’s patients have it easy, with electric beds that enable them to get used to sitting before being placed in a chair).
Rather than physical therapy, medical intervention was the focus; draining the lungs to help avoid pneumonia and fighting infection in the bladder. This was a period before indwelling catheters, and the bladder was allowed to drain into a bag of its own accord. This meant that the bladder never completely emptied, so urinary tract infections were frequent and sometimes fatal. John believes the fact that he was not a heavy drinker nor smoker – that his kidney was intact – help him survive this period. He also admits that he was just lucky.
Luck, of course, is always relative!
After seven months in Prince of Wales it was time to leave, but John was unable to return to Orange given the pressures of single parenthood facing his mother. Instead he was sent to Weemala nursing home in Ryde, at the site that was later to become the Royal rehabilitation Centre, Sydney (http://www.royalrehab.com.au/history.html). The home had been established in 1899 to accommodate patients discharged from hospital without alternate residence, and its entryway still proudly bore the tagline, “Home for the Incurables.”
20-year-old John was placed in a room with two other men aged in their 60s. The nursing home functioned on rigid gender restrictions, men downstairs women upstairs. Even the occasional concert placed men on one side of the auditorium and women on the other – institutions operating on conservative church-based moral dictates. Resources were limited and the quality of care marginal. John vividly recalls the dispensing of medicines. Tablets for all the residents on the ward were placed in a bowl and patients were asked to select their own based on colour of the tablet. John was never quite sure whether he was taking pain medication or a laxative! Meal times the basic: breakfast a piece of toast, lunch hot meal, dinner sandwiches. Many times they were given leftovers, stale sandwiches nearly or food. And since the nursing home retained the total amount of a resident’s pension, there was little opportunity to supplement ones diet.
Given limited staff, John was rarely placed in a chair. He spent almost all the time flat on a bed, staring at the ceiling. I find this hard to comprehend. I ask him what he did with his time? Nothing, he says. There was no television, and you couldn’t hold a book. At least his bed was wheeled to the common areas and he was left near other patients. They would talk to him, but there was an age gap of 40 years or so. Given he was not receiving physiotherapy the muscles that might have functioned were not exercised, so he could do very little for himself. If someone was willing to turn the pages, he could read a newspaper.
John’s most vivid recollection was a question he once asked the matron. “How long am I going to be in here?”
She replied, “When you come in here son, you don’t come to get better. You slowly get worse and die.”
I am flabbergasted. I ask John whether this advice demoralised or motivated. We sometimes imagine people like John as being somehow more heroic, more stoic than we are, and yet the reality of living with disability is that you are not only physically dependent, but also psychologically dependent upon the care of others. Unsurprisingly, John describes the months of horror and isolation and the depression that ensued.
Dark times are rarely permanent and for John it was the encouragement of family and friends that birthed hope. Sometimes little things make a difference. A friend of the family from Orange started nursing at Weemala, and she gave John extra attention – even sneaking him extra provisions (and the power of food should not be understated). When his sister heard of the matron’s prophecy, she insisted, “This is not going to happen to you.” Another of his sisters moved to Sydney, and it was decided to start taking him out and about. As often as possible his brother-in-law would manhandle him into the back of their old Dodge car and take him home for lunch or out and about the town. John recalls the awkward interaction with strangers. Many people simply did not know how to relate to people with disabilities. Parents would ensure their children gave him a wide berth. Shopkeepers would rarely address him directly. Waitresses looked to his carer to find out his order. But whatever the difficulties John was starting to live again.
He decided he needed to get out of Weemala. The timing would prove fortuitous, as a place had become available at the newly established spinal unit at Prince of Wales hospital, Randwick. The only difficulty was that the nursing home did not want to let him go. And since they controlled the entirety of his pension, his family decided a kidnapping was in order. Pretending to take him out for a day visit, they whisked him away to Prince of Wales.
……… to be continued.
For those of you interested in some of my more scholarly work, I recently had an article published in the Scandinavian Journal of Disability Research. Below is the abstract and introduction,
Work, which plays such a prominent part in the narrative of human life, is central to a person’s happiness (or unhappiness). Because this is so, the fact that spinal-cord injury (SCI) tends to take a person out of the workforce (sometimes permanently) is recognised as a central part of post-injury loss. This paper draws on the insights of the virtue tradition and the discipline of positive psychology, to explore the notion of happiness (well-being) and its relationship to the vocations of people with SCI. In particular, it describes the virtues that can contribute to a person’s capacity to obtain and sustain employment. This includes virtues relating to dependency and independency, as well as the role of hope, optimism and the like. It concludes with a brief discussion of the contribution that people with SCI can make to the culture of the workplace.
The relationship between work and happiness has always been ambiguous. We spend most of our lives either preparing for work or being at work, and so it is an activity that comes to frame our identity. Often, we begrudge the amount of time we are forced to give to our jobs, which can be stressful or tedious, exhausting or boring, too complex or meaningless, or all these things at once. The workplace is nearly always political, and we are never paid enough for what we give or for what we put up with. But where would we be without work? The civil rights movement and feminists have understood the significance of work, of equal access and equal pay. The central place that work holds in our lives is not merely tied to the (false) assertion that money brings happiness, although we do need to earn enough to pay for necessities and the small pleasures of modern life. More substantive, however, is the meaning that work provides. Happiness transcends the ups and downs of day-to-day life in the marketplace and is built upon the story of a life; a narrative made up not only of family and friendship but also of our contribution to the world. Whether our labour is paid or voluntary, that contribution is generally accomplished in and through our work.
What, then, of those who cannot work or, at least, tend not to? This paper examines the contribution of work to the well-being of people with a spinal cord injury (SCI). It is exploratory in nature, seeking points of convergence between empirical socio-scientific studies, the virtue tradition (with its insight into dependency), and the conclusions of positive psychology. This unusual conflation requires some explanation before we come to the heart of the argument being made – which is that the “happiness” of people with spinal-cord injury is connected to their work and to the virtues (especially virtues of dependency and independency) that frame personal well-being and success.
and so I ramble on. For those who would like to read the whole article (draft version prior to editorial amendments and publication), it can be downloaded on the following link:
for those of you looking for the published article (especially for the purpose of citation), it is available:
In disability studies, there is generally a distinction that is made between “impairment” and “disability”. The former is a medical problem whereas the latter is a social issue. While often the two go hand in hand, it is possible to conceive of a society in which an impaired person will not be impacted by the process of disablement.
Let me explain.
For most of human history, physical impairment has meant social exclusion. At its most basic, this might have been the result of straightforward issues of access. The person relying on a wheelchair couldn’t make it into town because the curbing was not cut to enable wheeled travel, building entrances were stepped, transport was inaccessible, corridors were narrow, bathrooms were small, et cetera. Great strides have been made in Australia in these matters, although until you spend time in a chair you don’t realise how far we are yet to go. In the suburb in which I live – Ingleburn – three quarters of the shops have a single step entrance, so I’m kept out of restaurants, hairdressers, florists, butchers and the like (sometimes that is a good thing!). But this is nothing compared to the primary area of physical exclusion, which is the family home. By far the vast majority of private houses in Australia have multiple steps for entry, narrow corridors, internal stairs, and tiny bathrooms. But I don’t want to complain. As I said, I am fortunate to be born in 21st century Australia, where I can catch a taxi, ride a train, get on most (but not all) buses, access most public buildings, and find an accessible toilet. What all of this means is that I am less disabled (socially excluded) then I might have been. In fact, most of the time I am not access disabled at all.
Beyond access, though, disability is more subtle. In the first place, many impairments cause social exclusions that are virtually inevitable. The deaf person, for example, is automatically excluded from much of our verbally grounded society, and even the vital help of a translator establishes a certain amount of social distinction. For the person with some form of intellectual impairment, there is the difficulty in engaging in the philosophical and political life of the community, although intelligence has many dimensions and a person’s capacity to participate is often greater than we think. Once again, in these areas I am fortunate, since my spinal-cord injury has not affected my capacity to think or communicate. I am challenged, however, by the amount of social life that occurs at night – since tiredness and pain send me to bed early. My injury has also removed me from involvement in the sports that I used to do with my friends and my kids. Now, I cannot expect people to move all their parties to the daytime, and nor can I demand that everyone take up chess rather than go surfing. My point is that it is at night and on the weekends – the times when people party and play – that I feel the frustrations of being disabled.
The connection between impairment and economic power is another sphere that creates disability. I was listening to a debate today about whether Australia should become a republic, and one of the arguments in favour was that Australian society was a meritocracy rather than an aristocracy. I would not want to return to the latter (and I am a Republican and not a monarchist), but the assumed understanding of merit as being deserving of political and economic power is necessarily framed over and against demerit, by which is meant disability (even if that is unintended). People with impairments may not be able to work, or they may only be able to work part-time, and often in low paying jobs. Whether they live on a pension or a minimum wage, they often struggle to participate fully in money driven, consumerist societies such as ours, and thus their impairment has become a disability. [At this point I should note that I’m not appealing for money or crying poor – so don’t feel the need to send cash! neither am I arguing for Marxism – but that is a debate for another day.]
There is finally, an element of social exclusion that is nothing other than an evil that needs unmasking – prejudice. Human society has almost always judged people by the shape and capacity of their bodies, and such judgements permeate every sphere of life. It is this fact that connects disability studies to the spheres of gender, race, and sexuality. This area is important enough for me to explore in a blog post to come.
In conclusion, reflecting on the distinction between impairment and disability has left me wondering whether I’m disabled. My preliminary conclusion is that, while my impairment is permanent and unbending, my disability comes and goes. It is a liberating thought. It means that my injury doesn’t define me, at least not all of the time, and never completely.
When people imagine quadriplegia they assume complete paralysis of everything from the neck down, and have an image of a paralysed Superman in their mind. Sometimes, people who meet me are surprised by my movement, and I almost feel guilty – like some sort of a fraud – because I say I’m a quadriplegic, but I have more movement than the man of steel!
To give you a better understanding of my injury – and the medical transition from my early days in hospital to now – I thought you might be interested to read a brief extract from an autobiography I am toying with (tentatively titled, Husbands Should Not Break). This extract is a little technical– I promise you, it will not all be like that – but it provides some insight about the medical journey of a person with SCI:
On most days my medical care is supervised by the spinal unit registrar, Jasmine, but today she was accompanied by her boss. Dr Bonnie Lee is short … tiny in fact … and he never stops moving; he rocks backwards and forwards on the balls of his feet, he picks up a medical chart then puts it back down, he turns his gaze from one person to another, a doctor charged up with Eveready batteries. He was engaged in rapid-fire strategy, in planning the next steps of my rehabilitation with Jasmine. They talked about medicines and procedures, and goals for physiotherapists. I’m sure all this is important but in the weeks I have been in hospital I have yet to receive a straight answer to a question that was becoming increasingly urgent.
When a gap opened in the conversation I asked, “What is my prognosis? Will I recover or is this all there is?”
Bonnie stopped moving, gave me his full attention (and even slowed down the pace of his speech).
“This may be all there is. You may get no further neurological recovery, or you may regain almost everything. There is just no way of knowing.”
He continued (speeding up again), laying before me the basics of spinal cord injury. The spinal cord is approximately the diameter of a finger, consisting of millions of nerve fibres that transmit information from the brain down to every part of the body (instructing the muscles of the body to move), and in the reverse direction, providing feedback (sensation, both pleasant and painful). In their traverse to and from the brain, the nerves of the spinal cord are protected by the vertebrae that make up the spine. Nerves that exit the cervical vertebrae (C1 to C8 – the upper section of the spine) control breathing and supply movement and sensation to the neck, upper trunk arms and hands; those that exit the thoracic vertebrae (T1 to T12) supply movement and sensation to the trunk and abdomen; those that exit of the lumbar and sacral vertebrae supply movement and sensation the legs, bowel, bladder and sex organs.
(He gave a thoroughgoing description, which I have paraphrased. He was treating me as an intelligent adult, and I really appreciated it)
“Your break,” he went on to say, “is the fourth and fifth vertebrae but you seem to have most of your C5 function; shoulders and bicep. What is impacted is everything below C5 level; wrist (C6), triceps (C7), fingers (C8). Obviously, everything else below the trunk is damaged.”
I have asked other doctors the same question but I asked again. “Is it a good sign that I have some feeling below the level of my injury, however muddy” (I can sense touch but not hot or cold. I cannot feel needles, which is some compensation).
Bonnie’s response confirms what I have already been told. “Motor neurons and sensor neurons traverse distinct parts of the spinal-cord. It is possible for a person to have feeling and no movement and, conversely, to be able to move without feeling”; he went on to describe the surprising difficulty of walking without sensation in your feet and legs.
In terms of prognosis (and again I paraphrase), the problem is that science has not yet reached the point that it can scan to the level of the neuron (which is more than 1000 times thinner than a human hair), so we have no way to determine the extent of the damage in the case of an incomplete injury. At the time of an accident the area of injury swells and goes into shock – a little like a swollen ankle. Over time, the swelling subsides and undamaged neurons are able to resume their function. Most recovery is had in the first few months – and there is something of the J curve effect thereafter. By six months to a year the injury has largely stabilised, but recovery may continue through the following year, sometimes later. There is simply no way of knowing, and so no real way of planning for the future.
His conclusion is worth quoting in full (I can pretty much remember it verbatim). “An incomplete injury is a blessing; it means that recovery is possible, we just don’t know how much or how little, or how long it might take. It can also bring challenges; it not only makes it difficult to make plans, but it can give rise to additional hardships – not least of which can be pain below the level of injury. Increased sensation is not always positive, but is better than having no feeling at all.”
This was a lot to take in, but Bonnie’s thorough and brutally honest explanation was precisely what I needed. He finished with a challenge:
“Whatever your neurons do and don’t do is largely out of your control. But if you work hard, if you use the muscles you have and exercise those areas that are experiencing improvement, you can make the most of whatever level of return you get. Even if that return is minimal, you can learn to function and flourish, with wheelchairs and mechanical aids and computers. You still have some say in the shape of your future.”
I like that. It is incentive enough, at least, to help me cope with what is coming next.
So, now I am about 2 ½ years down the track from the accident, I am at the point where my injury seems to have stabilised. So where do I stand (don’t you love the English language)? Well, in a word “imbalanced.” Obviously I have the function typically available to those with a C5 injury (biceps, shoulders, partial chest and above). Because I am an incomplete quad, I have had further recovery. Below the chest there is not much in the way of functional movement – a few odd muscle tweaks here and there; party tricks I call them. In terms of my arms, while my left side has changed little, my right side has regained some useful (although weak and awkward) movement in my triceps, wrist, and fingers, which have provided me with the ability to eat and drink (I still need help cutting things up), use a computer mouse (an extra large trackball), pick up and replace objects, throw food at my children (inaccurately and only at close range) and the like.
I still need carers for all sorts of tasks (mornings and evenings obviously, as well as for various functions through the day), but probably my biggest disappointment is that I have not had the recovery needed to enable me to independently transfer. Of all the potential capacities, the most important for a quadriplegic looking to increase independence is the ability to transfer – to move oneself from bed to a wheelchair and from there to any number of places; a car, so as to avoid the limitations of having to drive a powered chair onto the back of a modified bus/van; a lounge, to be able to sit next to your wife, cuddling her as you watch TV; a bed, so that you can choose for yourself when to go to sleep. I spent a year trying to pick up this skill with the awesome physios at Prince of Wales hospital (Fernanda and Keira the legends), but didn’t pull it off. With help, I can move from bed to a chair if there is no slope (unrealistic in the real world), but a hoist is the more efficient and safer mechanism. Obviously, it has its limitations.
In terms of feeling, there is not been much change since the early days. I have partial, muddy, feeling below the level of injury. I can generally tell when I’m being touched, but you could stab me and I’d probably not complain too much (as long as you cleaned up the mess). I can’t feel hot and cold. If I pick up a hot cup, my hand responds with an automatic spasm, so I have to be extremely careful with tea and coffee. I get pain in various parts of the body but am able to manage it. I take a few drugs, and the other key is to learn to refocus the mind. The brain turns out to be a pretty powerful pain reliever – at least most of the time. the feeling that I have gives me some advantages, especially since I can often tell if something is going wrong.
All of this is a long winded way of saying, were he still alive, I could beat the man of steel in an arm wrestle.
I’ve been involved today in an online conversation with my friend, Jay McNeill, over at Growing Sideways. I thought it might be fun to bring my readers into the conversation. Let me start with a quote from his blog:
All of us get things wrong. Most of us will reflect on life and recognise that enthusiasm, pride or an agenda got in the way of a balanced view. I am as guilty as hell when it comes to speaking my mind and gingerly repairing the damage in the aftermath, I guess that is a litmus to my maturity – or lack of. Because my special party trick is causing conflict, I have a little more grace these days when I witness others suffering from verbal diarrhoea.
But…occasionally I get miffed enough to make a public comment for the 6 people who read my blog! Recently I read a blog from a Dr of Theology who chose to offer some commentary about people with special needs (physical or mental) suggesting they may carry these burdens with them in heaven if they are content within themselves here on earth. Honestly, I don’t have a view on heaven other than I don’t think anyone knows much about it. At the end of the day it is a benign conversation that is speculative and it shouldn’t have bothered me, it was just theoretical gymnastics stroking the ego of the author - but it did bother me. I wondered if he forgot the conversation was about real people with real families carrying unimaginable pain, the manner and tone of the conversation was disturbingly disconnected. I think what bothered me most was the pious and elevated position that was awarded with credibility from his readers because his thoughts were from a ‘theological’ perspective.
Jay’s blog post continues – and to finish his post I’ll refer you directly to him: when theologians get it so wrong.
Here is my response on his blog:
I think the term “theologian” gets a lot of bad press for the work of a very few of its membership. In fact, the type a theologian you are talking about – narrowminded, mean-spirited, certain they are right – probably comes from a particular constituency. Most theological work – as with most study – opens a person up to the realisation that God transcends their categories. Indeed, most theological teaching involves opening rather than closing people’s minds. Given that there are so many criticisms of theology from so many angles – e.g. theology kills the spirit, theologians deal in the abstract and not the real world – I think some defence of the discipline is in order.
Now, in terms of the issue that sparked the blog, I think you should name the person and identify the issue. while I would certainly agree that speculation as to the nature of heaven (and hell) should be held loosely, you might be interested to hear about Amos Yong’s reflection about image of God to in people with a disability – and what that might mean for the future. The difficulty, of course, is that disability is not one thing, but a label that refers to many things. In Amos’ case, he is working with the down syndrome of his brother, and he makes the point that the disability is so much a part of his identity/person that to envisage him without it makes no sense. He also wants to recognise that his brother is fully in the image of God as the person with down syndrome, and then speculates (and he admits as much) that something of the down syndrome will carry through to the future. He bounces out of the image of Jesus who retains his nail scarred hands and feet, and imagines a future for his brother where his identity as a person with down syndrome continues, even as he is freed from the physical and intellectual negatives that went with the condition.
The point is not really to presume to know the future, but to make a very important point about the present – about the value and worth of his brother. As another (evil) theologian has noted (Jurgen Moltmann), eschatology (theology about the future) is never really about the future – it’s not about the details of the return of Christ or speculation about the Antichrist. Rather, it’s about hope, which is something we experience in the present. We look to the future, where there is no more crying, and mourning, and pain, and that inspires hope – which transforms our present. Amos Yong looks to the future of his brother, and still sees all the wonderful things about his brother that are connected to his disability, and he also sees the hardship as being wiped away, and this paradoxical continuity/discontinuity gives him and his family hope and joy in the ups and downs of life.
It’s not my place to transpose that thought into your situation with sunny, or even to guess as to whether it is relevant. I also recognise that there is some conditions that need more reversal than others. I certainly could do without any remnant of SCI in heaven (presuming it exists and that I get there). But perhaps I might retain some of the lessons learned (as you once said in an email to me).
I understand that Jay is framing a further reply, and will link you up when that occurs and our conversation continues. Feel free to add your reflections in the comments section below.
The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.
Here’s an excerpt:
4,329 films were submitted to the 2012 Cannes Film Festival. This blog had 15,000 views in 2012. If each view were a film, this blog would power 3 Film Festivals