pain

pain

I woke up last night at about 3 AM in pain. Well, in more pain than normal. It’s been almost 6 years now that I have lived with permanent pain, a span of time I remembered this week when I spoke to a fellow quadriplegic who said he’s also been in pain since his injury, forty-three years ago (but still, he insists, he has had a great life). It seems an awfully long time. To greater or lesser degrees, it’s a problem for many people with a spinal-cord injury, and it sometimes worse for people whose damage is incomplete (as is mine). And I know we’re not alone.

Nerve pain is hard to describe. Imagine a sheet of finally grained sandpaper, which is rubbing lightly over your skin, pushing a little harder on your hands, feet, bottom, and groin. It burns, although it’s not excruciating. But it continues without pause for minutes, hours, days, years. It moves in waves, gentler in the morning, but increasing in intensity as the day wears on. If you’ve ever had a urinary tract infection, nerve pain in the bladder is like that desperate feeling that you need to urinate, but there is no relief and no antibiotic that will bring it to an end. In addition to nerve pain, some of us are also rewarded with stabbing aches (whether real or phantom, they feel concrete); imagine the ache of arthritis in your hip or back, but you can’t easily move to relieve it.

To write about pain is fraught. It is open to narcissism and overstatement – “look at me, look at my courage and resilience.” But there is nothing inspiring about dealing with pain. Mostly, we just do our best to ignore it – to pay attention to other things. And when it ratchets up, I’ve learned to curse; a grumbled sheet, folk (my voice recognition software is protecting your eyes and ears), which doesn’t really accomplish much, but sometimes you just need to let it out. It’s not spiritual, or courageous. It is a fact of life, but not the whole of it.

Pain is meant as a warning mechanism, but there is no warning in nerve pain. But it turned out that I should have listened to my body last night. The pump on my pressure mattress had switched off, I didn’t realise it, and my bed had gone flat. When my carers arrived in the morning, we discovered a pressure mark. Nothing substantial (I hope), but enough to keep me in bed. And that really gets my goat.

 

welcome home

home
a church called home

I love my church. Why? It’s vibrant, energising, and interesting. It has slightly strange “Techno” music which, if it’s not really my preferred style, at least enables me as an old man to pretend I’m young. But mostly I love it because it is welcoming and inclusive.

It just so happens to be the case that my pastor, Sebastian, has two disabilities (well, three, actually, but we probably should label my attendance as an impairment rather than a disability). He doesn’t make a big deal of them, but neither does he hide them. The first is a long-term mental illness and the second is a slight speech impediment – a stutter that probably goes unnoticed by most people (in mentioning it, I hope I haven’t condemned him by bringing it to the surface?)

It is unusual in this day and age for a pastor to admit to a mental illness. This is because leadership is generally understood as “leading from the front” – as modelling the perfection that Christianity is supposed to achieve. Even more challenging, society as a whole, and Christians in particular, are suspicious of people with mental illness. We think of them as unstable and dangerous, and Christians assume they must lack faith. So people living with the illness, and especially leaders, tend to keep their impairment hidden. Sebastien manages his illness by following the medicinal and psychological advice of his psychiatrist, and he is stable and doing well, although as anyone struggling with the mental illness knows, its challenges are never entirely absent, and life has its ups and downs. More to the point, he is entirely open before the congregation about his illness.

As to his stutter, it largely goes unnoticed, mostly because he devotes preparation time to ensuring his communication is free-flowing. Indeed, most people who have heard Sebastien speak would be surprised to hear that he struggles with a stutter, because he is an exceptional communicator. He has a natural stage presence, he is quick-witted and funny, and his messages are well constructed. But I love the fact that he is a great preacher and has a stutter. The best communicators are not robots, but people willing to be authentic.

So why am I telling you this?

For me to say someone has a disability is not to diminish them, but to pay them a compliment. But that is neither here nor there. I love my church, not because of Sebastian’s disabilities, but because he has allowed them to inform the way he relates to his congregation. Gone is the pretence of perfection that too often categorises church leadership. In its place is a radical inclusiveness that allows people to truly be themselves. And if the gospel means anything, it is that God loves people as they are, no strings attached, no perfection expected.

 

 

 

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.

Domestic abuse and theologies of control and submission

This week, ABC television screened a two-part documentary by Sarah Ferguson, Hitting Home, available via catch up on ABC I view. The documentary tells the stories – and shows the bruised faces and bodies – of beaten up women, and then takes the viewer along their journey with police and the court system, through to the courageous rebuilding of life after they managed to escape their abusers. The film is difficult but necessary viewing, and it made me angry and sad. Above all,  it was a wake-up call – challenging us to face up to the crisis of domestic abuse.

The magnitude of the problem beggars imagination. According to Ferguson, there are more than 650  domestic violence events every day in Australia, and more than one hundred thousand apprehended violence orders (AVO’s) are taken out annually. And these statistics catalogue only reported instances of abuse, which far too often goes on behind  closed doors.

Usually an unspoken scourge, domestic violence has been at the centre of public conversation in Australia in 2015 after the indomitable Rosie Batty was named as Australian of the year. Batty’s honour followed the death of her son, Luke, at the hands of her husband (so far in 2015,  more than 78 women have lost their life to violent partners), and her subsequent public advocacy in defence of the victims of domestic violence; predominately women and children at the hands (and tongues) of abusive husbands and fathers. In her acceptance speech she declared:

Whilst we celebrate the wonderful country that we live in today, there remains a serious epidemic across our nation. No matter where you live, family violence exists in every pocket of every neighbourhood. It does not discriminate and it is across all sections of our society. Family violence may happen behind closed doors but it needs to be brought out from these shadows and into broad daylight. One in six women has experienced physical or sexual abuse by a current or former partner including some of those celebrating with us today. One in four children and at least one woman a week is killed. …
To the Australian people, look around. Do not ignore what you see and what you know is wrong. Call out sexist attitudes and speak up when violence against women is trivialised.

As Batty asserts, domestic violence has its sustaining power in sexist attitudes and values. In the Hitting Home documentary, Ferguson observes that “what starts as efforts to control a partner’s behaviour and life, leads to the gradual undermining of her self-worth, and then to violence.”

What was especially harrowing was watching abused women judge themselves for the abuse that they suffered.  They struggled  to explain to themselves why they  submitted to the violence for as long as they did. Mostly, they persevered for the sake of the kids, because they didn’t want their children to grow up in a single-parent family. And when, in fear  for their life, they eventually fled, they chastised themselves for not doing so earlier. One woman told the camera, “I’m an idiot. I’m so embarrassed. I’m worthless.”

Ferguson also made the attempt to understand the perspective of the perpetrators, interviewing men who were participating in a 10 week jail program intending to  provide them with strategies to prevent them abusing  in the future. What stood out, though, was that while the victims of abuse chastised themselves, the perpetrators deflected blame,  either denying the abuse altogether, blaming the victims for provoking them, or passing off their own violent behaviour as a mental illness, something out of their control.

But while I despair about these pathetic men, it was also apparent that the women we met on screen were much more than just victims. These were people who had the courage to leave violent men (and leaving is when things really get dangerous), and the determination to start their lives over, often with very little resources, and rebuild a home for themselves and their children.

The film leaves one with the burning question, what can be done – what can I do? And there are no easy answers. There is the obvious need to bring the topic of domestic violence out of the secrecy of the bedroom and into the public conversation, since it only as we face up to the problem that anything will change. Ferguson hopes that if we speak plainly to our children, boys and girls, then the next generation might not suffer the abuse that is too common in contemporary family life.

The overriding argument was that we need to learn a different approach to relationships,  rejecting the all too common idea that masculinity is about power and control, and femininity is about submission.

Here resides the challenge for the church. In Christian tradition and practice, male control is especially connected to theologies of female submission to male authority, to symbols of feminity that idealise a woman’s modesty and passivity, and to liturgical practices that normalise female silence. As Julia Beard reminded us earlier in the  year (see here), the sad fact is that, “Far from ending abuse in the home, organised religion may be legitimising it.”

Domestic violence is grounded in and justified by distorted constructions of masculine power. Abusers are enabled to act as they do because they believe in the abhorrent logic that men have the divine right (nay obligation) to exercise authority over women whose role it is to submit. This attitude is too often reinforced by church teaching. And Christian women are too readily pressured to internalise their own submissive inferiority to authoritative men. The results are as inevitable as they are tragic.

Now I know that complementarian Christians, whose theology  teaches that male authority and its complementary female submission are a part of the natural created order, will feel hard done by at this point. True authority, they will say, is found in servant leadership, and true submission, they will insist, is to men who model their authority on the headship of Christ. From this perspective, domestic abuse is a sinful distortion of ‘true’ complementarity. And no doubt there are a good many men who exercise their headship benevolently.

But that such benevolence is possible doesn’t override the fact that violence has its origin in unequal power, and the solution to violence is not merely a kinder exercise of power, but the overturning of such power. That is precisely what Jesus models when he tells us that he came not to be served, but to serve – and it is what Paul insists on when he requires the church to submit to one another in reverence to Christ- mutual not hierarchical submission, men to women as much as the other way round, so that submission is only ever an appropriate response to love, but never to abuse. The gospel, doesn’t entrench male control, it repudiates it in the strongest fashion, as it does every power imbalance that has justified violence; Jew over Greek (racism), free over slave (hierarchies of class, wealth, and social status), and male over female (sexism) – Galatians 3.26. (And as an aside, I would add able bodied over disabled).

So much for theology. What about church symbols? Consider, for example, the ultimate symbol of female submissiveness, the reification of a demure and perpetually virginal Mary. We paint her in our iconography with eyes downcast, the perfect submissive woman whose purity is most deeply apparent in virginity. But is that Mary as she should be envisioned? What difference might it make if we imagine her with her head raised and eyes staring unbendingly into our own? Here is a strong mother of many children (no virgin, whatever the uniqueness of Jesus’ conception), empowered by The Spirit to participate in the story of human redemption. Far from the ideal submissive woman, Mary should be a symbol of female freedom, equality, and power. But that’s not the story we tell the girls and boys in Sunday school, who learn only of powerful bible men, contrasted with meek, mild and pure submissive women.

the-virgin-at-prayer-il-sassoferrato

And don’t get me started on what we model in our liturgies. Only men can be ordained. Only men can be senior pastors. Only men can preach. Only men can be elders. And so women are silenced in church, and disempowered,  and we’re surprised they don’t feel empowered to speak up about abuse at home. If it wasn’t so damnably horrifying – if it didn’t make the church complicit in the blight of domestic violence – it would be laughable.

I know that abuse has many other causes, and non Christian institutions are equally sexist, and worse. Women are mere props at many sporting events, are often abused in porn, are presumed dumb by fashion designers, are constantly demeaned by a sexist media. But that our churches are not as bad as others is no excuse. In fact, it’s an opportunity for the church to lead the way; to repent of its see no evil here no evil pretense that nothing is wrong; to change its theology and culture; to appoint powerful women models at all levels of leadership, and in numbers sufficient to show that it’s serious about the matter; to establish explicit teaching and policies about the appropriate response to abuse; to say it loud and say it often:

the church won’t tolerate abuse, and women and children should never submit to violent men. Never ever.

Day 1 of the cleansing

  It’s been a long time since I’ve documented my days, but for the sake of something to do I thought I might risk voyeurism and share something of a travel log of my holiday at Prince of Wales hospital.

Sorry if I’m repeating myself, but to bring newcomers up to speed, I’ve been in and out of POW over the last few weeks as a result of autonomic dysreflexia brought on by bowel care gone wrong – my fault not the carers. It’s been a boring but relatively easy stay, since after going to the toilet in the morning, Ive been healthy the rest of the day. I’ve felt like an interloper on a ward full of others who actually need to be here. 

The permanent solution to my problem is a colostomy, and the operation is set for next Tuesday. In addition, my doctor wants to poke a camera all the way up to the top of the small intestine, and for that reason he wants me completely empty. So from today I have seven days of bowel preparation. Today I start a clear fluid diet, then tomorrow I take a magic potion to get things flowing. And since my bum has a mind of its own, this means 6 days in bed incontinent. I guess this means I’ll no longer be an interloper. 

So I woke to my first meal: broth (hot water with a very faint chicken flavour), orange juice, black tea, strawberry jelly. Not too bad, really, although I suspect it will get harder eating the same fare three times a day. Truth be told, it’s better then the hospital food normally tastes!

Since this was to be my last day in my chair for awhile, I went out and about and decided to get myself a shave. There is something about having a barber shave you with a cut-throat that feels deliciously decadent, since It’s an intimate, pampering, service ( is this why women get their nails done). I was shaved by “razor” Sam, a handsome Middle Eastern man with a Tattoo of a pair of scissors on his neck (I’m guessing he has no plans to change his career). Using a shaving brush, he lathered my face for about five minutes, softening the skin in preparation for the cut. He then went to work with the blade, his face so close to mine that I could smell his cologne and breath, which was fortunately minty and fresh. He managed the job without a nick. With my grey beard gone, I’ve lost 10 years of age. Elly will be pleased to hear that I’m kissable again. 

I snapped a selfie of the shave, but my poor skills are in evident by the fact that the iPhone blocks the view.

  
  Lunch: broth (hot water with a very faint chicken flavour), orange juice, black tea, strawberry jelly. Are you seeing the theme here?

I had a quiet afternoon, sleeping a bit and reading. I’m spending some time with Lauren McGrow’s draft manuscript, missionary positions, which is exploring Christian ministry to sex workers. Lauren is a gifted writer and a radical, so the book is great fun. I love it when past students overtake you with the quality of their work.

Dinner: broth (hot water with a very faint beef flavour), orange juice, black tea, strawberry jelly. Did you notice the variation? I’ve also been allowed to have some jelly sweets. It seems that the basis for this meal plan is sugar – nothing but sugar. I’m starting to feel a desperate need to brush my teeth after every meal.

Well, that’s about it for day one. I think I’m going to delay getting out of my chair and into bed. I’m guessing I’ll be sick of lying down in the days to come.

Sayonara