X-Men Apocalypse: a celebration of mutants, freaks, and crips

I’m certainly not the first disabled person to celebrate the X-Men franchise for its positive representation of disability. The central character, Xavier, is a wheelchair free cripple, and while I might wish that they’d used a disabled actor to play the part, I love that the moral centre of the series is a man whose spinal-cord injury fades into the background. We know he is disabled, but he’s never presented as being “trapped” in a wheelchair. And his message? People may think you’re a freak, and treat you like an outcast, but it doesn’t matter what you look like, what others think of you, we will accept you. Your mutation is not a curse but a gift.

I’ll admit that X-Men Apocalypse is not a plot and character driven masterpiece. And this particular film has its absurdities. Not the superpowered mutations; these are the ‘given’ of the X-Men universe that have to be embraced by anyone hoping to enjoy the films. The problem with this offering in the franchise was that whole cities are turned into rubble (and I’m not giving away any spoilers here, because this was apparent in the trailers, which showed our beloved Opera house disintegrating), but there’s not a dead body to be found. I mean, millions upon millions must have been killed as skyscrapers disintegrate and cities are destroyed, but there is nary a visual clue nor a second of dialogue that faces the horror of what slaughter on an unprecedented scale.

But, hey, this is a film about freaks and action, and I for one can look past the silliness to enjoy the visual effects and cheer the symbolism.

Let’s take the language, mutant. Just as “niggas,” “queers,” and “crips” have taken terms of derision and owned them as labels of pride, so does X-Men transform the disabling slanderer of “mutant” into an identity of power. It makes me want to claim the term for myself. Can I be a bad ass mutant too? What’s my superpower, I wonder? Does the ability to run over tossers with my chair count?

Importantly, the film resists the temptation to turn mutants into bland inspirations. There is something profoundly insightful in the fact that the mutants, who have all experienced horrible discrimination (a term too soft to capture what they have endured), respond in a variety of ways. Xavier may be the moral ideal, responding to hate with love, sympathy, and hope, but we understand the rage of Magneto, and can’t be sure that if we were in his place we would not respond as he did. I read a story recently by a paraplegic in New York who, after repeatedly being ignored and abused by taxi drivers who couldn’t be bothered dealing with his wheelchair, got into the habit of using a Swiss Army knife to puncture the tires of the cabbies who mistreated him (in Ruth O’Brien, Voices from the Edge). I’d like to think I’d respond as Xavier (or Jesus) would, but I’m not sure. In X-Men, Mutants and cripples are as strong, weak, moral, flawed, determined, and uncertain as the rest of us.

Finally, X-Men Apocalypse raises questions about gods and their actions, and while it doesn’t dig deep, it did get me thinking. If Apocalypse (the character) is the god of devastating authority and power, is Xavier a Christ figure, an alternate view of divine-like power, capable of knowing and controlling thought, but choosing to limit himself, to respond to evil with love and self-sacrifice, and embraces the outcast? I’m probably trying too hard, looking for metaphor when I should just be enjoying the action.

I think I’m right, though, in my judgement that the message of X-Men Apocalypse (and of all the films in the franchise) is:

be a mutant and be proud, develop your “gift” and use it – hopefully for good.

It’s a reminder worth the price of a ticket.

“Trapped in a wheelchair”

My memoir, Husbands Should Not Break, is imminent – the editing and typesetting is now complete, and I’m working with the publisher on the cover. I’m happy with the way that it looks, except for one thing. The draft includes an image of an empty wheelchair that is typical of what people normally imagine wheelchairs look like.

conventional image of a wheelchair
conventional image of a wheelchair

The reality, though, is that a person with a spinal cord injury wouldn’t use a chair like this (at least in wealthier nations) – a rickety, ugly, boxy chair without any of the accoutrements that are necessary to enable a person without trunk control to balance and avoid pressure marks. This is to say nothing of the fact that most quadriplegics need electric chairs. My brand of wheelchair is pictured here:

Permobil Wheelchair
Permobil Wheelchair

The difference between the two chairs is as between a pushbike and Porsche, but my dislike of the typical image of the wheelchair is that it feeds into the general impression that to have a spinal cord injury is to be “trapped in a chair.” The endless social media circulation of videos showing paraplegics and quadriplegics using clunky walking machines is evidence of the same idea; the assumption that what is really terrible about spinal cord injury is the fact that it prevents us from walking.

But I don’t hate my wheelchair. Actually, I love my wheelchair. It’s what liberates me from the constraints of my body. If I was required to marry an inanimate object (you never know, this might be one of the consequences of proposed changes to marriage laws), it would be to my wheelchair. “Do you, Shane, take this wheelchair to be your lawfully wedded partner?” Well, yes, but only till the next model comes along!

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.

Nigel no friends

State of origin with my boys
State of origin with my boys

This is a photo of the boys and I at the recent State of origin (clever Elly managed to find it online, and although you need to look carefully, it’s definitely us). It was a great night, especially since the blues won for the first time in nine years.

But aside from the sea of blue, what do you notice about the photo?

That’s right, sporting venues seem to be of the opinion that disabled people have no more than one friend. And since my 2 boys needed to sit together, they were allocated seating one road in front of me, and about 10 spots to the left.

The guilty venue was ANZ Stadium (which had allocated only single seats next to the wheelchair spaces), but we’ve had similar experiences elsewhere. Over summer, we joined the singing throngs to see the West Sydney Wanderers at Pirtech stadium in Parramatta. At that venue, the wheelchair section has no seating for able-bodied people, so  the boys were allocated seats nearby, but not close enough for any conversation. They could have chosen to stand next to me, but that’s a bit much to ask teenage boys for two hours worth of game time.

I really don’t want to sound like a whinger, but accessibility is about more than simply allocating spaces for wheelchairs. it’s about ensuring that people don’t feel excluded, isolated, and shoved aside. It’s about creating a welcoming environment, one where people with disabilities are treated as part of the tribe – as people whose enjoyment of the event is as much about going out with friends as it is about whatever is going on in the field (or on the stage).

Note: I was prompted to blog on this issue after reading about Chloe’s frustration when purchasing tickets for a concert – see http://www.adayinmywheels.com/2014/06/it-seems-being-disabled-means-you-have.html.

PS my apologies to anybody named Nigel (esp. cous). I just couldn’t resist this title.

 

I’m not trapped in my wheelchair

The mainstream media is obsessed with the idea that the single most important longing of paralysed people is to walk again. This is apparent even in the way we speak about paralysis – with the able-bodied assumption that a person is “trapped in a wheelchair.” But the truth is that I am not trapped in my wheelchair; I am freed by it.

I say this, because once again the world has gone troppo over an exoskeleton, with the opening of the World Cup featuring a paralysed man strapped to a Robocop Avatar, kicking a soccer ball. Apart from the fact that the kick was insipidly embarrassing (travelling all of two meters), the device was a monstrosity, and I have absolutely no desire to try it. If science wants to help me out, it should concentrate its research on the bladder and bowel, and do something about nerve pain and spasm (but of course these sort of advances would make pretty yucky news stories). More importantly, allocate resources to making public and private spaces accessible to wheels, and spend money helping disabled people find meaningful employment, and focus your media stories on paralysed people that have succeeded in the diverse challenges of life using their wheelchair as one of many tools to help them to flourish.

but enough of my ranting. If you’re interested in this topic, let me refer you to a couple of blogs that have said it more bluntly than I can:

Why the obsession with walking? “So hey, able-bodied media: quit making me feel like wheelchairs are a shitty, sub-par option. Stop beating your exoskeleton drum. And most of all, let go of your obsession with walking, because it’s totally overrated.”

and another:

Walking is overrated: “The exoskeleton is Department of Defense research detritus used by profiteers who sell the dream of walking to newly paralyzed people who cannot imagine life as a wheelchair user. As such the exoskeleton is symbolically and practically destructive to a newly paralyzed person. So I would urge paralyzed people to boycott this device! Screw the exoskeleton. Screw walking! Get me a good wheelchair, an excellent wheelchair cushion, and some adaptive sports equipment so one can remain in excellent physical health. Better yet, get paralyzed people a job. Forget about the exoskeleton. Take those funds, the millions of dollars of potential waste, and put a job placement office in every rehabilitation facility. Empower paralyzed people to do what we Americans love to do: work, make a decent living, and be autonomous. Own a home even. Have a family. Get married. In short, be ordinary. Walking is simply not required for all this nor should it be glorified.

Who Am I?

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

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

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

So who am I without these things?

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

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

don’t spend the day in my wheelchair!

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

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

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

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

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

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

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

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

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

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

Jeremy just a little bigger than my nieces
Jeremy just a little bigger than my nieces
a bed wherever I go
a bed wherever I go