“Yes I can,” Paralympics and the positivity myth

It has taken me some time to decide whether or not to comment on BBC4 “Superhuman – Yes I can” advertisement for the Paralympics, because I know that any critique I make will be misunderstood. But it’s airing on the Gruen transfer last night has tipped my hand.

So let me say upfront that it’s a brilliant advertisement, the Paralympics are much more interesting than the Olympics, and I do appreciate the value of disability getting the attention that it does in this advertisement. More often than not, disabled people are represented by able-bodied actors in film and television, so it’s great to see the real bodies of disabled people on the screen.

But…

Like almost every other public mention of disability nowadays, the add buys in to the positivity myth. I’ve written on this topic a number of times before (here), but in sum, the positivity myth insists that a positive attitude will enable a person to overcome every barrier they face in life. While it might be a motivating sentiment, it’s just not true.

Indeed, the great insight of disability advocates has been that disability is not primarily a medical or psychological problem – it’s not about individual capacity or attitude. On the contrary, disability is a social problem. People are disabled when the built environment keeps them out of public and private spaces, when transport systems prevent them from being able to travel, when cultural attitudes such as disgust and paternalism result in social alienation and exclusion.

“Okay,” you might ask, “what’s that got to do with BBC4’s ‘yes I can’?”

The problem is that people think the advertisement is about disability, but it’s not. The vast majority of disabled people cannot do the things shown in this advertisement. Of course we celebrate all of the achievements represented on screen, but the statement “gee I’m afraid to go on has turned into yes I can” is downright insulting; and gets to the heart of the problem of the positivity myth. I’ve never met a disabled person who is afraid to go on, but I’ve met some who can’t go on because in one way or another the world in which they live in has said “we want nothing to do with you.” And no positive attitude can solve this.

The advertisement is entitled “the Superhumans,” which is an advance on being called “freaks.” But the truth is, that disabled people aren’t superhuman. On the contrary, disability is about what it is to be human, at one and the same time strong and weak, confident and fearful, successful and failing – occasionally triumphing, but most of the time wanting the same thing as everybody else; to be treated neither as freakish or superhuman, but as a family member, friend, and colleague.

Having said this, I still like the advertisement. I’m glad it was made, and I’m glad it’s being circulated, because disability is normally a marginal topic that is now given prominence, and people with a wide range of disabilities are being celebrated rather than pitied. Further, I don’t think it falls into the trap of inspiration porn, because it’s not saying to nondisabled people “if this cripple can do this, what’s your excuse?” Rather, it’s celebrating the hard work and the achievements of people who warrant our applause – not because they are disabled, but because their accomplishments are impressive.

Perhaps I be happier if the video had a different title and a different set of lyrics. I look forward to seeing what they do in four years time.

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.

Why I hate Jojo Moye’s Me Before You

me before you

It’s hard for me to convey how much I hate Jojo Moyes’ supposedly romantic novel Me Before You, and dread the movie that is due out later this year. It is the story of a romance between a wealthy play boy become quadriplegic and his carer, although it’s a romance with a twist.

Spoiler alert: I need to discuss the ending to explain my hatred, so stop now if you (God forbid) want to read it yourself. But I begrudge anyone spending money that might find its way into the author’s pocket.

Okay, where was I. To borrow Moyes own summary, “the book is about a quadriplegic who wants to die.” Actually, the book is about a quadriplegic who wants to die, and at the end of the book chooses to do so – despite the fact that he found love and had a loving and supporting family, and so had an amazing opportunity to live a full and flourishing life. He was, after all, as rich as is a bottle of fine whiskey, and could have afforded any number of compensations to manage life with a disability– unlike most quadriplegics who are poor, but still choose to live.

So let’s not beat around the bush. This is a book celebrating suicide. Worse, it’s a book that presumes that suicide is the only rational response to the experience of living with quadriplegia.

In an interview about the book (available here), Moyes was asked whether she knew a quadriplegic before she wrote the book. She replied:

“not quadriplegics. The thing that really informed it was a member of my family who suffers from a progressive disease. I have been involved in feeding her, taking her out, and that kind of thing. Part of what inspired Me Before You was just questions I had in my head about quality of life.”

Bloody hell. Moyes (when you read that name, say it with venom) writes a book about quadriplegics and she hasn’t met one. Had she done so she would have discovered a community of people that have the courage to choose to live.

Now, before you get on your high horse and remind me that some people do choose to die, and that’s their right, let me say that I understand that quadriplegia is downright hard to live with, and many people have it much harder than I do. And the person that chooses suicide has my compassion and support.

But I’m not going to celebrate that choice. And I’m not going to allow someone who has never met a quadriplegic to continue the myth that those of us with the injury would be better off dead.

Right, breath slowly, relax. I’m feeling a bit worked up.

I guess if you are looking for a tear-jerking romance that will get you thinking, you might enjoy this book. If you do read it, I hope that you notice that it reinforces the stereotype that women need a man to tell them what to do, and that you understand that our play boy hero is really a privileged white guy who just can’t come to terms with the fact that life is fragile and difficult but that if you fight the good fight and persevere it’s worth it in the end.

“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!

passionate worship

The ecstasy of St Theresa – an angel of the Lord (eros?) Piercing St Therese with the arrow of passionate desire for God.
The ecstasy of St Theresa – an angel of the Lord (eros?) Piercing St Therese with the arrow of passionate desire for God.

Lately, I’ve been reading about the intersection between disability and sex. This thinking has led me to reflect upon our identity as sexual and passionate beings, and then to wonder about what that says about our relationship to God. What follows is an exercise in creative thinking – not a systematic analysis of worship. If you hate it, please don’t beat me up too much. But at least I hope you find it stimulating…

Contemporary Christian worship music is framed by a subliminal eroticism, revealed in song lyrics, musical style, and the body language of Christian bands and recipient congregations. This eroticism reflects the long history of sensual language in the Christian spiritual tradition (see the picture and of St Therese above), with its expressed longing for union with Christ and the loving embrace of God. A passionate, ecstatic, and experiential sensuality was central to the worship of the charismatic renewals of the late 20th century, and remains prominent in contemporary worship, with songs emphasising God’s overwhelmingly powerful love for us, and our passionate longing for him.

To cite a recent example, consider one of my favourite worship songs, Hillsong United’s Oceans (Where Feet May Fail). To complain that this song might as easily be directed at a lover is to miss that that is precisely the point. Written in the first person, the song draws on passionate human eros and directs it to God: “my soul rest in your embrace, for I am yours and your mine.” Its sensuality is contained not only in the lyrics, but in the beauty and purity of vocalist Taya Smith’s voice, gently supported by the (sexy) timber of male backup singers. It is a song sung by beautiful people, who celebrate the mystery of divine beauty with eyes closed, and hands raised, symbolic of both submission and embrace. Surely this is not something to be decried but, rather, it’s what worship is all about.

Eros, sexuality, is fundamental to what it is to be human – to be a passionate person. Too often in its history the church has sought to suppress sensuality for the sake of boring, cold, and rigid agape – self-giving love. Self-giving is, of course, central to love, but it is self-destroying if it is not accompanied by passionate eros. And this has been the story of the church, which has demanded that people love by subjugating passion. Yet all the while it has failed to realise that its self-flagellation was a sign of eros suppressed and distorted – a celibate priesthood corsets the Bride (i.e. the church), telling her to ‘suck it up and think of God (or England).’ Repression on one side leads to oppression on the other.

If contemporary worship is subliminally erotic, then at its best it’s a celebration of human passion and a longing for intimacy and touch. As such, it’s a celebration of bodies, bodily sensations, and ardent emotion, all of which should be brought to bear in worship.

Where it goes wrong is when passionate worship (human to divine) functions exclusively, as a replacement for the thrill of human to human passion.

If worship can be erotic, then is it possible for sex to be worship? There is obvious support for this idea in Hinduism and Tantric sex, as well as in various animistic traditions and pagan spiritualities. Although less prominent in Jewish and Christian tradition, the canonisation of the Song of Solomon stands as an especially potent sacralising of sexual desire. That church theologians have often analogised Song of Songs as a symbol of the passion of Christ for the church is telling, even if, thereafter, Jesus is generally imagined as asexual. In fact, the incarnation is itself a divine embrace of embodied humanity – and Jesus had sexual organs that presumably functioned in much the same way as ours. Jesus’ particular vocation may well have kept him a virgin, but he was constantly in trouble for ignoring the sexual proprieties of his day by welcoming women and men as friends and lovers (in the broadest sense of that term). This is not to say that we can model our sex lives on Jesus (sometimes WWJD really is absurd), but it is to say that Christianity should celebrate the body, in all of its wondrous, sensual, and messy absurdity.

Might we go further, embracing the idea that we could learn something about what it is to worship by thinking about our sexuality (and, of course, doing more than just thinking)? I’m not primarily talking about fantasy, (although I’m not excluding it, since imagination is surely part of the divine image), but about exploring what our passions have to say about us, our self-transcending capacity to love and be loved. These passions are ultimately reaching for transcendent beauty; that is to say, our passion seeks the divine.

But if that’s so, what might be the implications of our assumptions that certain groups of people are or should be asexual? Of course I’m thinking about disability, but the logic (if there is any) has much broader implications. Precisely what those are is a topic for another 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.

Rigoletto: disability and the fool

Elly and I were on the train headed to the city when five half drunk middle-aged men wearing blue joined our carriage; obviously off to the rugby final, Waratah supporters hoping for the club’s first premiership. With the joy of alcohol dimming their inhibitions, it wasn’t long before they directed their attention to us, jealously admiring my chair, and then noticing Elly’s faux fur-lined jacket and my suit, “where are you going tonight?”

I hesitated, embarrassed, before responding, “to the opera house to see Rigoletto.” And then to make it clear that we weren’t actually opera-snob type people, Elly added, “it’s our first time – you’ve got to try it once.”

And so we made our way to the opera house, where we found our seats three rows from the front (a real treat, since wheelchairs are normally squashed into the back corner). The orchestra swelled and the curtains were raised on a darkened set, where a hunchback with a gamy-ed arm and twisted feet was being dressed into the outfit of a court jester – the fool Rigoletto.

The first act is set in the Duke’s Palace, where the courtiers are cavorting with half naked girls (my boys were excited to hear that the opera included some explicit views of nicely shaped pert breasts). Most lecherous of all was the Duke, who went on to seduce the daughter of Count Monterone. In the midst of this riotous debauchery, the fool’s role was to amuse the court, mostly by mockery – laughing at the courtiers as they mocked him in return. Act 1 finishes with Count Monterone being sent to the gallows after denouncing the Duke for the affair with his daughter. As he is dragged away, Monterone pronounces a curse, which the Duke laughs off but Rigoletto takes to heart. Act 2 moves to Rigoletto’s home, where we meet his beautiful daughter, Gilda. And you can guess what comes next (hint: it involves kidnap, sex, revenge, murder, and tragedy).

It was surprising good fun. The plot was engaging and camply melodramatic, and of much more importance was the transcendent voices harmonising with the orchestra (sung in Italian with a screened translation). Emma Matthews’ (Gilda) range, tone, power, and control was angelic, especially when in play with Jose Carbo’ (Rigoletto) and Diego Torre (the Duke). It was a wonderful spectacle, and I had a rollicking good time.

What I hadn’t realised, though, was that the central character was going to be disabled. It took me a while to decide whether to be annoyed or delighted by the portrayal. On the one hand, Rigoletto was a fool, a character whose disability characterised him as laughable and put him on show. Such has always been the place of disability, a fact I’ve discussed earlier in my blog about “inspiration porn.” In Rigoletto, though, the social construct of disability is unmasked, a point made explicit in the song that opens Act 2:.

O man! — O human nature!

What scoundrels dost thou make of us !

O rage! To be deformed — the buffoon to have no play !

Whether one will or not, to be obliged to laugh !

Tears, the common solace of humanity,

Are to me prohibited!

Youthful, joyous, high-born, handsome,

An imperious master gives the word —

“Amuse me, buffoon,” — and I must obey.

Perdition! How do I not despise ye all.

Ye sycophants — ye hollow courtiers !

If I am deformed, ’tis ye have made me so;

But a changed man will I now become. What scoundrels dost thou make of us.

From a disability perspective, the genius of Rigoletto is not only that the central character is disabled, but that he is neither rendered as weak or idolised as perfectly virtuous. Instead, we are given a man who plays the role expected of him (fool), who is no hero (in fact, a murderer), but who nevertheless takes a stand against the courtiers, and seeks vengeance against the Duke. He is a complex character, and the expanse of his soul is revealed in songs of power.

But while Rigoletto rises above the typical view of disability, the same can’t be said for its treatment of gender. Admittedly, the opera is a reflection of its context, but even so, it presents women as either worthless whores or saintly virgins, in each case mere playthings for lascivious courtiers and controlling fathers. It’s certainly a reminder of what feminism has accomplished.

When I mentioned these things to Elly she laughed at me. “Shane, just watch and enjoy the show.” Of course she is right. Next time I am asked by a drunk football fan what I’m doing dressed up for the evening, I won’t be embarrassed to say that I’m going to the opera.

Rigoletto: I highly recommend it (five stars).