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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That damned LED clock

My eyes opened and I stared at the ceiling. The red LED laser clock told me it was 2 AM. My brain was fried but I’d been woken by a spasm that had travelled from my toes up through my calf and thigh and into my stomach. I shut my eyes and tried for a quick return to oblivion, but my legs were twitching. My spinal injury is incomplete, so I have sensation in my paralysed legs and hands – but it’s muted and warped. If they’ve been still too long, the tension in my legs burns and builds, and then fires, like a bolt of electricity, causing my knee to kick up and bend tight. Sometimes they’ll fall to the side, so that I lay like a twisted chalk-drawn outline of a corpse. Last night, they kicked up and then straightened back out, before shaking crazily in spasm, like an out-of-control orgasm, but one that brought no relief. And so began a cycle that continued until I eventually lost consciousness; twitching, spasm kick spasm, momentary respite, and then twitching again. It is not painful. Just annoying.

What I wanted to do while all this was going on was to get up and take a piss; to stand at the toilet bowl in the dark and hear the twinkle on the water. Or I thought about sneaking into the kitchen, finding some fresh bread, dropping it in the toaster, and when it was smoking hot, smothering it with butter and Vegemite. Or (because I can’t help but torture myself), I imagined crawling over to Elly’s bed, and straddling her while she slept, waking her with a kiss on the neck. But my legs were lead weights, trapping me in bed, so I had no choice but to stare at the ceiling and hope that I’d fall asleep quickly, before that damned LED clock ticked over too many minutes and I started to worry about how tired I’d be tomorrow.

The last time I noticed, the clock read 2:45 AM. At 7 AM I was woken by the smiling face of my carer. I’d soon be out of bed and in my chair ready for the day. At night I’m a cripple, but in my chair I’m a freewheeling lunatic. Bring on the day.

The positivity myth: a belated response to 60 minutes and the Curtis Landers story.

Curtis Landers

60 minutes report: http://video.au.msn.com/watch/video/curtis-landers/xwf16yz?from

I hate watching television reports on spinal cord injury, which normally to follow a predictable two-part pattern. Part one provides pictures of neck braces, helicopters, ventilation machines, and shocked families, all of which is a visceral reminder of the horror of my own injury, bringing back memories I’d rather forget. Part two describes a person’s inspirational recovery, in which she or he refuses to give in to disability, and so reaps the rewards of determination – eventually stepping out of his or her wheelchair.

Don’t misunderstand me. I love to see people who incur a spinal cord injury recover. I don’t feel bitter or jealous and I am genuinely happy for any and all recovery. My best friend in hospital, Sid, began as a quadriplegic and now walks. I recently had the joy of hearing him tell of his return to skiing on the snowfields where he had his accident. Recovery from SCI is something to be celebrated.

But – and this is my point – many people don’t recover. And they aren’t any less determined, any less (or more) inspirational, any less hard-working, any less newsworthy. Yet time and again media reporting celebrates those who recover and ignores those who don’t (or worse, implicitly demeans them), as though their permanent struggles (and achievements) with disability are too embarrassing to talk about.

So I came to the Peter Overton’s 60 minutes report on Curtis Landers with some reluctance [which is why this blog post is a week out of date]. I have to say that I was mostly pleasantly surprised. Curtis is a 15-year-old boy who injured his third and fourth cervical vertebrae while playing rugby league; an injury that would ordinarily render him a permanent quadriplegic. While at the time the story was aired it was still too early to know the full extent of his recovery, what the program was able to show was his remarkable improvement. Curtis has been able to regain function in his arms, fingers, and legs, and when discharged from the hospital, triumphantly left his wheelchair behind. The program rightly celebrated the rapidity and extent of Curtis’ recovery. It also applauded the achievements of his first aid worker, whose ministrations on the football field immediately following the injury minimised the damage to the spinal cord.

This good reporting notwithstanding, 60 minutes couldn’t help but perpetuate the positivity myth. Speaking about Curtis’ recovery, Overton noted that “in his mind, it was never a matter of if, but when,” and followed up with the standard question “was there ever a moment, in all honesty, when you thought ‘I will never walk again?’” Curtis gave the expected response, although with some reluctance “not really, I was planning to play [football] this season again, so walking wasn’t a worry.” This exchange was followed with video of Curtis at work in the gym, taking tentative steps, while John Newman & Alex Clare’s inspirational “Not Giving in” played in the background. And surprise surprise, the report ended with Curtis stepping out of his wheelchair as he left the hospital.

Let me be clear. I have no issue with Curtis; he answered the question honestly, and his positive attitude toward his circumstances is commendable. His recovery is wonderful news, and it should make headlines. What I take issue with is the question Overton asks, which is deliberately framed to imply that believing in something with sufficient faith, and never giving in, will bring it to pass. The reality, though, is that in the early stages of rehabilitation, many people with an SCI hold on to the belief that they will recover, but ultimately have to come to terms with permanent disability.

The fact is that belief has very little to do with recovery from an SCI. When a person incurs a spinal cord injury, the long-term damage to the neurological system is indeterminate, and it takes months and years to find out the extent of the damage caused by the initial trauma. In Curtis’ case, he regained movement in his arms and legs within a week of his accident, and was walking within months. This means that his spinal cord had incurred less damage than his doctor [Jonathan Ball**] initially thought when he apparently suggested to Curtis’ parents that their son would never walk again. To do Overton justice, his 60 minutes report made this clear, before undoing its good work by defaulting to the positive thinking myth. Curtis’ wonderful recovery had nothing to do with his expectation, faith, or positivity, and nor was it a product of his “defying his doctors.” These attitudes might well have helped him deal with the emotional trauma of the injury. But mostly, he was lucky (blessed, if you prefer). If the damage to his neurological system had been more severe, no amount of positive thinking would have kept him out of a wheelchair.

The positive thinking myth has obvious correlations with the naïveté of Christian prosperity/faith healing. Both place too much emphasis on individual faith. Both focus on those who experience healing, ignoring and implicitly denigrating those who don’t. And both fail to recognise that suffering and disability are an inevitable fact of human life, not something that can be believed away.

I hope that 60 minutes and Peter Overton continue to tell the stories of people with a spinal cord injury. There is too much horror in the media, and we do need the encouragement of stories such as that of Curtis Landers. But is it too much to ask that these good news stories be framed more carefully, perhaps by referencing accounts of those who don’t regain any neurological function, who never get out of their wheelchair and walk again, but who nevertheless manage to make a go of life with a disability?

 

** A comment on Dr Jonathan Ball. I was especially disappointed by Doctor Ball’s comments on the program. He observed of Curtis’ recovery that, “It is astonishing. It is inspirational. Across all neurological operations there are a handful of patients that you remember, who are the people who keep you doing what you do. And Curtis is in the handful of patients who are the inspiration to keep me doing what I do.” This may be true, and neurosurgery may well be a largely impersonal discipline – and no doubt Curtis is a memorable young man. But whether he intended it or not, what Dr Ball implied was that none of the other patients that have been in his care are worth remembering (or even worth operating on). I, for one, am glad I had more compassionate doctors supervising my recovery.