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In the footsteps of a Superhero Causeplayer – Superhero Week 24-30 July 2016

In the footsteps of a Superhero Causeplayer – Superhero Week 24-30 July 2016

Heroism. It’s one of those things that has captured our imaginations and has fueled a multi-billion dollar movie empire in the past 15 years. The rise of conventions has seen cosplay move from the fringes of pure nerd culture to acceptable, nay celebrated, pride of place. Conventions are taking centre-stage in people’s calendars and so much of this as a result has entered into our modern storytelling. Heroes.

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Reuben Rose as Deadpool

And yet the presence of extreme power used for the protection of those without it is somewhat stale. Superman Vs The Local Hooligans is a short-lived fight. Heck, Spider-Man vs The Punks when they were attacking Mary Jane in the rain really didn’t have much tension; there wasn’t anything particularly super about it. Yes, he went in to save a girl he liked from an attack, but there was no real risk to him. Three punks with a couple of knives versus a guy who can lift a sedan over his head and a bunch of extraordinary powers? Wouldn’t make for much of a film overall.
And frankly, we don’t care much about the potential victims when there’s no risk to their hero.

So we see the character of the heroes we idolise only when they are up against a threat of greater power to their own. That is when the defence of those weaker actually has some depth. When Superman fights Doomsday, an opponent who has made swift destructive work of the rest of the Justice League and just about any other local heroes available, it echoes Romeo screaming to Tybalt “Either thee or I, or both must die!”

What makes a Superhero try a Superhero is when they step up against immeasurable odds without a thought as to their own wellbeing to stop harm from people they don’t even know.

And so we come to Superhero Week. I am a little surprised right now that this has not become the epicentre of the Cosplay calendar. Even more so, I am surprised conventions have not taken on the mantle in part.

Why, you ask? What makes this cause so important amongst many other worthy causes? After all, there are people who are researching cures to infant neuroblastoma, breast cancer or the Ebola virus. There’s any number of ribbons, daffodils and badges in shiny boxes with earnest and well-presented people waiting at train stations across the city or backpackers in matching T-shirts who want to wave and have a moment of your time. There are scientists and researchers who are working tirelessly to try to understand complex threats to our health and wellbeing.
All of these causes are noble. Their ambassadors are to be admired, lauded even. But they are not, to me, superheroes. Not in the same way that the staff and volunteers at Bear Cottage are.

So here is the difference. Matching wits against riddles, viruses, growths, economic challenges, dirty water, lack of food; these are equal challenges to the men and women engaging against them. They are small steps on a road to progress and in many ways, most are likely to see victory. We have better cancer cures than ever before and survivability of what used to be a death sentence is increasingly common. This needs to continue – don’t get me wrong. Applauded. Encouraged. Financed.

But what makes Bear Cottage special is that they are facing an opponent who will never be defeated. The Children’s Hospital itself is waging war against diseases and illnesses but Bear Cottage, that special place of respite, love and care, wages war against tragedy itself.

You see, Bear Cottage is a place for children (and their families) with life-limiting illnesses. “Terminally ill” is the way it used to be put. None of the patients are going to survive and more so, they are those whose existence has only been brief and told of so much promise ahead. Families have had but a glimpse of the magnificence of the human whose existence will be cut short; there will be no meeting of the first boyfriend or girlfriend, wedding days, first cars, graduations. Instead, there is debilitating illness and pain.

Now, you might be saying, that’s pretty sad and all, but how is that different to dying in a hospital? And surely, is not all death tragic in its way? The palliative care nurses of the world, who take away suffering when it is at its worst and transition people gently and with great dignity from one existence to the next, are surely the same.

No. They are not the same. Bear Cottage is not about making death comfortable, nor should they be (although they do manage end-of-life care as well). They are about celebrating life. Within their garden grounds, parents are taken away and massaged (literally), cared for and nurtured, hugged and held and spoken to by other parents who have going through or are going through the same thing. Siblings are given space to play and not feel like this one situation lessens their own importance or value; they can go away on camps as well which give them much-needed space to be, well, kids, with other siblings who know what they’re going through. In this place, all delicious meals are consumed together and the frightening possibilities of the future are lessened by the fact that people realise they’re not alone.
But more so, for the kids themselves, battling and losing against conditions that will rob their small bodies of the strength of promise that we take for granted, Bear Cottage changes the focus from simply managing a condition to living life. They are taught to make chocolates from scratch. They learn new things. They make crafts and express themselves in music. They are seen as capable, functional humans with something special to give and each of these moments forms a precious and cherished memory.

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Nathan Melton as Spiderman

 

I was invited there in 2014 after I dressed up as Deadpool on a train and was (fortuitously, as it eventuated) arrested at Blacktown Station. I’d heard things about it in passing but really didn’t understand what it did; I thought of it as being a bit like the Starlight Foundation or Make-A-Wish, two other fine organisations that work in similar spaces. It wasn’t like them, though. It occupies a rather singular space.

I wandered the grounds with the staff and there is such a sense of joy and delight which is evident throughout. Where one might think a hospice would be sombre, there’s constant sounds of laughter and expressions of wonder which these tragic circumstances, these horrible conditions, would normally leech from families like a parasite.
I went through music rooms, where kids with various levels of motor function were engaged in song; some had tambourines, some had castanets, some had triangles, some had recorders and some simply had a stick which they could drag against an array of bottle caps. Some could sing, some could only move their heads, some were able to get up and dance, but all were involved.

At the end of the hall was a parent’s retreat and reflexology area, where parents were taken away and, often for the first time in a year or more, able to let go of everything and have someone else care for their bodies. Their families were in the hand of experienced staff and a live-in assistance dog, a golden retriever who lived to love and spent most of his time grinning at me like I was made of liver treats. Some of these parents didn’t even know how much they needed these moments, a quiet half hour of massage, incense and tranquility, until they got there; many would wind up in tears as tension would find its release.

Each patients’ room was decorated for that child before they arrived; whilst fully kitted out with medical equipment, there were also posters, props and toys, books and a special and unique blanket which was made for each child prior to their visit and kept for each subsequent one. At the end of each stay, these are packed away and the room is re-decorated for the next child; Bear Cottage speaks to each family beforehand and decorates the room to match on a personal level.

There was a room of networked PS3, and I was informed that as illnesses often rendered many of the children eventually in wheelchairs, they would enjoy competing against each other still in virtual environments, chatting to each other and wowing at moves or co-operating in multiplayer games. It wasn’t single-player situations, but four friends continuing, despite not being as mobile as they used to be, to play together and enjoy each others’ skills, personality and friendship.

I was taken down to a sensory room and explained that as a number of conditions progressively rob children of motor functions, often the last thing to go is control of the eyes. In this special space, ropes of optic fibre twist and wind and change colour and have roof-top terminations which look like stardust in the nights. Even when diseases are at their worst, I watched children wheeled in form delight in their eyes; gentle music piped through and they were left to be dazzled.

So often illness robs us of that. We focus on managing symptoms and pain and we forget that there is life still to be lived together; things to be learnt, joy to be found, wonder to be experienced at every turn, as individuals, as families, as humans. Bear Cottage taught me that.

But then came the kicker. When the disease has had its victory and claimed its prize, the Bear Cottage staff who had grown to know and love these children, had cradled them in the worst of their pain and known their families and loved their parents and their siblings, present the mementoes of their time together to the families in question. Photos and crafts and letters and drawings, lovingly put together to remember, in the midst of the darkest pain, that there was a fire of delight, a spark of unfettered joy which shone brightly.

I went home from Bear Cottage and hugged my children tightly. I dreaded the helplessness of the possibility of being asked by a sick child, “Am I going to get better?” and knowing the answer was, “No”. Or being asked, “Am I going to die?” and having to answer, “Yes”. That circumstance is tragedy in and of itself and that monster grows and lies and tells you that you are all alone –  weak, small, helpless and there is nothing you can do.

I imagine tragedy as an enormous scaled monster. Its skin black and its hands taloned; its teeth dripping and its eyes burning yellow, its mouth curled in a twisted grin of delight and satisfaction. Tragedy knows that it is strong. It knows that it’s going to beat you. At the point you meet it, you are entirely at its mercy and that must be a debilitating feeling; the weakness before insurmountable strength.

So for a hero – no, a superhero – to step between you and that beast and fearlessly begin kicking it steadily in the bollocks, absorbing blow after blow as it writhes and attacks and cheerfully saying, “Come, my friend, and let us greet tomorrow with all the joy that it can contain. Because you have made someone special and we can celebrate them together”- that, my friend, robs Tragedy of its power and instead of landing an almighty fist which crushes you into a million pieces, a limp hit finally arrives which knocks you over but which you can get back up from again. You are left with a bruise, a mark, maybe even a scar, but you are not broken.

Then you can look over at your superhero and see the same scars on them, covering them from head to toe as they get back up and go and fight again.

Bear Cottage costs over $4m a year to run and half the staff are volunteers. It is unique and that in and of itself should be cause for concern; there is only one place like this in Australia and there needs to be more. They have operated until last year, entirely on funds they raised themselves. They existed because of superheroes like yourselves, who gave generously because they too wanted to form a wall between tragedy and its victims and weather the blows.

And so, friends of the cape and cowl, this year I want three things from you.

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Aaron Henderson-Smith as Flash

 

The first is to donate towards someone taking part in Superhero Week. There is a link below for mine if you don’t know someone.

The second is to consider taking part in Superhero Week yourself. Bring it up at your kids’ P&C. Get people involved. Organise an event. Roast a pig on a spit in the front yard if you must.

The third is to help make Superhero Week something special. I feel like we should see more costumes on the street during Superhero Week than we do when Supanvova or Oz Comic Con are on. I don’t know how we can do this; personally, I’d love to see one of the conventions have the option of paying $2 extra per ticket for proceeds going to Superhero Week; 30,000 people over the course of the weekend would raise $60,000.

I feel that the Cosplay scene knows better than anyone what it means to be a superhero. We dress as them because we identify with them; we see something in them that we want to be part of ourselves. How rarely this opportunity presents itself.

This friends, is your chance. Not to be noble. Not even to be a hero.

But to be a Superhero. If only for a week.

Contributor: Reuben Rose

Please support the following heroes

Reuben Rose

Nathan Melton

If you wish to donate or don the outfit, Superhero Week commences 24-30 July 2016.

About Marie Pham

A multitasking mother that splits her time from parenting, building cosplays and coming up with articles whatever she comes across. Did I mentioned that she cooks?

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