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

 

 

DSC02729DSC02763DSC02624DSC03022

 

 

 

 

 

 

 

 

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

2014-12-18 16.12.43

2013 in review

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

Here’s an excerpt:

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

Click here to see the complete report.

7 October 2013 – three year anniversary

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

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

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

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