Vale Sheree Hurley, you’ve left us too soon

Sheree Hurley and I, Museum of contemporary Art.
Sheree Hurley and I, Museum of contemporary Art.

I’m devastated today to learn of the death of my friend Sheree Hurley. I first met Sheree at Prince of Wales hospital, and she completely changed my life. It was a month or so into my rehabilitation, and I was struggling to imagine how to live with my stupid broken body. Sheree, with her beautiful red hair and confident smile, wandered into my room with Jade, her stunning black Labrador. We talked about my injury, and I learned that hers was similar (C5 quadriplegic), and then she went on to describe her independent and fascinating life, and it gave me new hope. Her regular visits were one of the few highlights of my seven-month hospital stint.

We kept in touch when I left hospital, and would get together regularly for coffee in the city. Six months ago I interviewed her and recorded her life story. I will write it up sometime soon, but I’m just not ready to do so now. It’s enough to say that Sheree lived an amazing life. As a peer support worker, I have no doubt she gave hope to countless people struggling to come to terms with spinal cord injury. Working for spinal cord injuries Australia, she organised the first SCI independence Expo in Homebush. She developed videos and other resources directed at helping people with sci get on with their life. she was also an active volunteer with Australian support dogs, and after finishing with SCIA was involved in a project to build  respite  accommodation. More recently she worked at Royal rehab in Ryde, as a recreational officer – helping rehabilitating people find ways to enjoy themselves.

I did mention her in my memoir, and perhaps that recollection is enough for today:

23 November 2012 (Friday)

Today was pure joy; a sunny spring day spent in the city with Sheree Hurley. We have met up a few times since my leaving the hospital. She is a great encouragement, and it’s refreshing to spend time with someone who understands my day-to-day experiences. What I especially love about her company is her contentedness. She doesn’t ignore or deny the difficulties of living with SCI, but neither does she let them keep her down. On the contrary, she leads a full and mostly happy life, and I find her sense of well-being contagious.

We met up at the Museum of Contemporary Art (MCA) at Circular Quay. The day was warm but Sheree’s crip-circulation and thin frame had her rugged up for winter, wearing a jumper and jacket, a purple scarf, and a woollen beret, out of which flowed her shoulder-length auburn red hair. The MCA cafe is on the top of a modern styled building, looking over the Quay to the Opera house, Harbour Bridge, and beyond. We ate on the balcony, which today was awash with sunlight. Friendship, conversation, sunshine, and food in such a location, along with a black Labrador that draws the attention of all and sundry; on days like this, life isn’t half bad!

While conversation was the real reason for our get-together, the ostensible purpose was to watch a film, The Intouchables. Sheree was a little reluctant, saying that “I haven’t seen a film for years.” I found this hard to fathom, but I promised that she would enjoy herself. The French subtitled film tells the story of Philippe, a C3/4 quadriplegic with no movement from the neck down and, his carer Driss, a poor black, paroled migrant – each in his own way “untouchable,” the former a pitiable paralytic and the latter a despised African. [The journal goes on to talk about the movie – which is irrelevant for this blog].

Obviously, the story resonates with the experiences of Sheree and I, and she left the cinema surprised to have actually enjoyed a movie. After coffee we said our goodbyes and I thought about the fun that I’ve had today. I’ve spent so much time down in the dumps, and I wonder whether I have found one of the keys to pleasure; friends and film.

Vale Sheree. I can’t believe you’re gone. I am missing you already.

Shane.

goodbye Sheree, I will miss you.
goodbye Sheree, I will miss you.

Almost expelled from the SCG – or disabled people have no friends

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Clifton boys almost expelled from the SCG.

Last weekend the Clifton boys (Daniel, Troy, Kurt, and I) got together for a Brothers weekend. The schedule was full and we had a great time; Club Swizzle at the Opera house on Saturday, cricket on Sunday, and golf on Monday. Those of you who know us might not be surprised to hear that we almost got thrown out of the SCG. It’s a story worth sharing.

The game was a sold-out ODI, Australia playing Sri Lanka. We left home later then we should have (after being sidetracked by the movie Hot Fuzz), and so arrived a couple of overs late – just in time to see David Warner out for nine.

Now, it’s a well-known fact that people with a disability have no friends, so even though we’d purchased tickets months before, we were unable to get seating together. I was allowed a single carer in the disabled section, and two other tickets were allocated in the stands nearby. Upon arrival, however, we discovered that the disabled section was relatively empty, and had plenty of spare seats. We thus took the opportunity to sit together.

Empty seats in the disability section
Empty seats in the disability section

We did have one wheelchair neighbour, a young lady with her mother. About 10 minutes after we arrived, the mother came over and asked me how I managed to get tickets for three able-bodied people. When I told her that we didn’t – that we’d just taken empty seats – she went on to tell of her story. She’d had the same problem with us when purchasing tickets for herself and two daughters, one of whom was now seated in the stands on her own. Apparently, they’d arrived relatively early to find a bunch of empty disabled seating, and so sat together awaiting the start of the cricket. Not long before the first over was to be bowled, they were approached by an officious female employee of the SCG trust, who told them that because they didn’t have the appropriate ticket, they could not use the additional seat. The daughter was thus directed to the stands on her own. Mum was justifiably upset – promising never to come to the cricket again.

Our friendly neighbour
Our friendly neighbour

I suggested that we’d had similar problems in the past, and that the key was to stand your ground. She wasn’t convinced, but the cricket was on, so we all turned our attention to the game.

15 minutes later, we were approached by (presumably the same) female employee of the SCG trust. She proceeded to tell us that two of our party needed to vacate the disabled section and proceed to the allocated seats. We politely pointed out that the disabled section was empty (apart from a bunch of nondisabled people standing there but, for some reason, not being evicted), and that should anybody else with a wheelchair arrive, we would immediately relocate. This wasn’t good enough, however. She insisted that we move. We repeated our argument, and refused to move, and she repeated her insistence, and threatened to have us expelled from the grounds. We ignored her, and went on watching the game.

A few minutes later we were approached by two police officers, and the conversation was had once again. The police officers were clearly uncomfortable, but stated that if we refused to comply, we would be expelled from the cricket ground. I asked whether they really would throw out a disabled wheelchair user for such a stupid rationale, and he replied that he would have no choice. When the woman’s back was turned, he told us under his breath that although he believed we were in the right, he would be obliged to do as she requested.

At this point we noted that the otherwise allocated seats had been taken by someone else – that they would need to be moved on before we could relocate. Also, I insisted upon going above her head – I wanted to speak to her manager. By now the situation had become absurd, and the woman and the two police officers retreated; presumably to talk strategy.

A few minutes later we were approached by another SCG officer. He informed us that none of the other seats in the disabled section had been booked, and that we’d be welcome to use them until another person with a wheelchair arrived. Good solution, we said.

We also mentioned our neighbour’s difficulties, and so he went to speak to her. A few minutes later, with her two daughters now seated together, mum came over and thanked us.

It turned out to be a great game of cricket. Glenn Maxwell scored 100 runs in 51 balls, and Australia hit 372 runs. Sri Lanka made a good effort of the run chase, but fell short. We had a great afternoon and evening because lots of runs were scored, Australia won, and we’d been able to enjoy together.

glenn-maxwell-v-sri-lanka-wc-2015

an apology – and a Twitter lesson

This is an apology to Rosemary Norwood and those within the autism community that I’ve offended. But because such an apology would be meaningless in 140 characters, I’ve moved from Twitter to my blog. What follows might also stand as a cautionary tale to others new to Twitter conversations.

My problems started when I watched an ABC AusAttitude documentary on autism. The show featured Rosalind and her artistic son, Claude. In addition to being a mum, Rosalind is also a neurologist and doctor who has spent her professional career engaged in scientific research about her son’s condition. The show told something of Claude’s condition and family life, and also featured Rosalind explaining some of her research and complex neurological challenge of finding a “cure.”

While watching I was committing the cardinal sin of digital multitasking – my phone was open on my lap, and I made the Twitter comment:

Stunningly interesting @Ausattitude on autism. Love the relationship between annabel and Claude, autistic brother.

I thought nothing more of this. After all, I have virtually no Twitter followers, and I can’t think of a single instance when any of my tweets have received a response. I was thus surprised to receive the following replies from @RosemaryNorwood :

the only good thing about the episode. Annabelle was the only person who seemed to unreservedly value Claude.

There followed a series of Rosemary’s observations about the show, including the following:

@scliffo @Ausattitude Think she got the idea that he has no internal life and no ability to feel family links or emotions from thin air?

@scliffo @Ausattitude Annabelle also unfortunately repeated “We think he might just see us as tools, to get what he wants”.

@scliffo @Ausattitude “I’m the doctor telling this family you’ve got this problem.” We’re not problems, either.

@scliffo @Ausattitude “There’s lots wrong with the hardware and software of autistics.” We’re different not wrong

Rosemary’s concern was that Claude was being spoken about, and treated as a medical problem rather than valued as a unique person. A much wiser person than me would have kept quiet at this point. After all, what do I know about autism. But I ignored my own rule (which is that you should always sleep before hitting send on contentious emails – or tweets), and went to the defence of Rosalind

@RosemaryNorwood seems a harsh and unfair judgement on her parents.

@RosemaryNorwood she was a medical research, so gave technical info. But she clearly displayed her love.

Of course, I would stand behind the truth of the statements, but repent tweeting them. Further on in the back and forward discussion, Rosemary criticised the program for showing a parent (not Rosalind this time) dragging a child across the floor. I flippantly responded “you’ve never been a parent, then” – on the basis that most parents would be guilty of dragging children at one time or another. Geez, this may be true, but what sort of an idiot says it? In all of this discussion, Rosemary wasn’t really disputing Rosalind’s love for Claude, but the ways in which she felt the documentary medicalised autism as a problem to be fixed, rather than showing Claude to be a uniquely beautiful and interesting person. Her concern was also that the program failed to show clearly the range of autistic experiences, and the unique contribution of autistic people to families and broader society.

Whether or not her criticism of the program is fair is for others to decide. Attitude Australia has responded to the criticisms of the episode (http://attitudelive.com/blog/tanya-black/editorial-response-unlocking-autism). I do appreciate the work of attitude Australia, and value their documentaries. I would encourage people to watch this one, keeping Rosemary’s comments in the back of their mind as they do.

I was particularly challenged by one of Rosemary’s concluding comments to me:

@scliffo @Ausattitude I would disagree. Perhaps you need to listen to some ASD voices to understand why.

Fair call. I’ve now tried to do so. And I’m sorry that my comments added to your anxiety in watching the show.

Fat

 

 

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

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

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

 

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

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

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

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

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

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

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

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

 

frontline vs administration and advocacy?

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

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

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

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

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

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

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

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

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

Travelling

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

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

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

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

 

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

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

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

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

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

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

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