Posted by: stelladuffy | October 20, 2014

The Language Battleground

I can’t believe I’m writing about this again, but here goes …

This morning Lynda Bellingham’s death from cancer was announced. Cue dozens (no doubt more) headlines and presenters talking about how she’d ‘lost her battle’ with cancer.

No, she didn’t. She died. There was no battle, there was a disease. She was not a warrior, she was a person. When we talk about cancer in the language of war, when we anthropomorphize cancer, when we make it other than the self, we damage anyone who is living alongside someone living with/dying of cancer, but we damage those of us with cancer most of all.

I have had two breast cancers, the first time round I had a lumpectomy, chemotherapy and radiotherapy, the second time I had a mastectomy and reconstruction.*
At no time have I ever found the language of battle to be anything other than at least a hindrance, and at worst dangerous. It is dangerous because it divides the self. It is profoundly damaging to the psyche split the self off, into healthy and sick, into me and ‘my cancer’, into this self and that self.

Cancer is not stabbed into us, it does not come in from outside, it is not something we can ‘stand up to’ as if it were outside of us, it is not something other, that we might ‘kick its butt’. Cancer is the body making its own cells. It is me, my body, making my own cells, cells that are cancerous. (Not right now, as far as I know, but certainly this time last year.) Sure, I don’t want them, those cells that are cancerous, but they are me, they are as much me as the cells that are not cancerous, they are not OTHER. Cancer is not other than our own selves. And, on its own terms, those cancer cells are not even sick. They are doing what they do, what is in their programming to do, as well as they can. They are not ‘baddies’, they are just cells. In the case of cancer we call it mutation. And in many other cases, mutation is what we call evolution.

Now, of course, anyone WITH the disease is perfectly entitled to use whatever metaphors they choose to get through their days. Personally, I’m always keen on absolute honesty. So it has not been useful for me, when I have had cancer, to hear the disease spoken about as other. It has not been useful to me, when I have had cancer, to hear the disease spoken about as a battle. Because this is not the truth. Cancer is not other and it is not a war. (And we denigrate the seriousness of both when we elide the two.)
However, for those of us who do have the disease, have had the disease, the all-too-pervasive directive to ‘fight’, ‘resist’, ‘battle’, is as absurd as it is brutal. (And it IS brutal – we regularly agree to be cut, burned, poisoned in order to remove the disease.) But while the treatment can be brutal, and while the effects of that treatment can feel brutal, our emotional response, our language response (and what is language if not a way to convey emotional understanding?) need not also be brutal.
We can chose to be honest, simple, we can choose to use plain language rather than over-emotive language. We can choose to save our energy for living, rather than use it to add hyperbole to our descriptions of living with disease, dying of disease.
“He or she has cancer”, not “he or she is suffering with cancer”. (“suffering” is so subjective, surely the only person who gets to say they are a sufferer should be the one who perceives themselves to be suffering?)
Victim, survivor, battle, fight, war … we have better and more honest words, plainer words.
I had cancer. He is having cancer treatment. She died of cancer. They are now well.
There is nothing wrong with the simple and honest.
And for those of us who have already been through it, who now live daily with the profound awareness that we may, yet, die of cancer, simple and honest is far preferable to reminding us (as if we can ever forget) that we might yet ‘lose the battle’.
I’m not in a war. And I refuse to allow lazy journalism and cheap sentiment to send me into battle.

* Mastectomy was neither suggested nor recommended first time round, reconstruction was my choice the second time, a choice I currently, largely, regret and will, no doubt, write about when I – in my own body – have processed what reconstruction has done to my body and why I chose to have it. Right now, seven months since surgery, five months since the second surgery, and prior to at least one more (minor) surgery, it’s far too soon to work out the mass of complex feelings I have around my own, informed and educated, choice to have a chunk of my stomach made into a breast/not-breast … more later, no doubt.

Posted by: stelladuffy | October 2, 2014

Fun Palaces are here!

I’m on the edge of tears almost all the time at the moment.
I’ve spent the past twenty months working towards this coming weekend and I can’t quite believe we’re actually here. This year alone I’ve had breast cancer for the second time, two big surgeries and one little one, my father-in-law was diagnosed with an advanced cancer and died, painfully and heartbreakingly. Yet alongside that, my first collection of short stories was published, I’ve written the first draft of a new play, finished my fourteenth novel, directed a show that was on in NYC & did some work on another with amazing people, and written a novella I’m hugely excited about (but not allowed to say what or why yet). And beneath all of this, pulling me forward, pulling me through illness and pain and recovery and work – the joy of work! – has been this weekend. The 4th and 5th of October 2014. The first Fun Palaces weekend.

Here’s a bit of background for those of you who haven’t heard me banging on about it since last January :

The Fun Palace was originally devised by theatre director Joan Littlewood and architect Cedric Price. Back in the early 60s, they imagined a building where you could watch a band (and learn how to play from the musicians after the gig), attend a lecture on mechanics, have a pint, listen to some opera, watch the football, view monkeys in the zoo via a live camera feed, or just sit back and soak it all in. This was pretty radical back then – spaces full of people deciding what they wanted to do, being allowed to choose – for themselves – what was ‘good for them’. An idea that the arts and sciences belonged not just to an educated elite – but to the masses – if only we would share them with those masses. And although Joan and Cedric came very close, in the end, the money for the building and the land was not forthcoming.
In January 2013 I suggested at Improbable’s D&D that perhaps we could do something for Joan Littlewood’s centenary on October 6th 2014. Something that wasn’t a play. We started to talk about the Fun Palace, Joan and Cedric price’s vision of a way make the arts and sciences, learning and engagement, accessible to all – truly accessible, truly involving. Not just being an audience member, or a quietly listening student, but participating, creating. That little idea of making one or two Fun Palaces quickly evolved into the Fun Palaces weekend, a campaign for community involvement in arts and sciences …

Now there are 137 Fun Palaces across the UK and beyond, created by and for local people.

Hundreds of people have had a hand in creating these community events – they’ve booked venues, arranged activities, asked for sponsorship, spoken in council meetings, asked for and been granted funding. They’ve worked with neighbours they’d never met before, discovered new skills, and recalled ones they’d long forgotten. I feel privileged to be part of something that has shown so clearly what Joan Littlewood called “the genius in every person”.

I didn’t know about that ‘genius’ when I was a kid. I was born in a council estate in Woolwich and grew up in a timber town in New Zealand. For us, in Tokoroa in the 1960s and 70s, going to a mainstream theatre or an art gallery involved a five-hour round trip to Auckland, but more than that, it would have needed my mum and dad to feel comfortable in such places. And they didn’t, so I didn’t. I was fifteen before I met someone who came from a background like mine who was working in the arts – it opened my eyes, made me realize that my dreams might not be so impossible. I don’t believe we’ve changed the world enough yet, I think there are still millions of kids like the teenage me, kids who don’t know how amazing they can be – as well as too many grown adults who also don’t know how amazing they can be. And how amazing they are might be something they discover from their local Fun Palace – from helping to make one, from visiting one, enjoying it this year and deciding to make one next year.
It’s not THE solution, of course, but it might be a beginning. It might be one way to make a difference.

And that’s why I’m close to tears all the time right now. That’s why, sitting alone in the office at 6.45pm tonight, I was suddenly sobbing. Because it’s been a hell of a year (and it’s only 3/4 through!) and it’s been an astonishing year and I feel so grateful to all the amazing people who have stepped up to create this extraordinary thing. Because the team I’m working with is amazing. Because the Fun Palaces makers all over the country, and further abroad, are incredible people – most of them volunteers, all of them making a real difference right where they live. Because I’m very aware that although the weekend is about to happen, with all the attention and build-up, truly making the Fun Palace, truly making all arts and all sciences accessible to everyone (and what an astonishing society would we have if everyone really knew and used their own genius?!) – is a lifetime’s work. And it never stops. We had a chat in the office this afternoon and agreed we’d be back at work on Monday, planning for Fun Palaces 2015. There’s a lot to do.

Thank you to the team – Sarah-Jane, Hannah L, Kirsty, Hannah N, Mandy, Katy, Amber, Dan.
Thank you to The Albany.
Thank you to Shelley, who has not only put up with this taking over our life, but is leading on her own Fun Palace.
Thank you to the Fun Palaces Task Force Volunteers, who did so much to help when I was sick, and since – Emma, Amie, Maggie, Tom, Mary, Jen, Jenn, Connie, Mark, Martyn, Jo, Ali, John, Kas
Thank you to all the Fun Palaces makers.
Thank you to the Fun Palaces participants and attendees.
Thank you to the Joan people, those who knew and worked with her, who have been generous in their support of this project.
Thank you to the Cedric people who have been just as helpful and kind.
Thank you to Joan and Cedric.

Friday 3rd sees the first Fun Palace of the weekend, with a school group (hence being on the Friday), at the London Metropolitan Archives, then Parkes Shire Library in Australia, then all the others in England, Wales, Scotland, Northern Ireland, Iceland, Germany, France and Canada.
Find your closest one here.

Let’s do it!

fun-palace-medium(Image by Emily Medley)

Posted by: stelladuffy | September 26, 2014

Everyone an Artist, Everyone a Scientist

choose what you want to do

Everyone an Artist, Everyone a Scientist* – the official title of our Fun Palaces website, is now live as an artwork on The Space – the online gallery and festival created by the BBC and ACE. There’s a great piece about it from Sandy Mahal, director of The Space.

Making this site, making it live and live (with both pronunciations) has been a huge labour of love, passion, outreach, engagement and real collaboration between the Fun Palaces team, Caper, Mudlark, and The Space.
We have, each of us, worked with people new to us.
We have, each of us, come to understand both the limitations afforded us by limited time, money, resources, peoples – and the possibilities that affords.
It’s been a massive job and we see this iteration as really the very beginning.

I urge you to have a look round the site if you haven’t already – here’s some bits I particularly like :
– every Fun Palace has it’s own maker page, be they big or small, funded or not, digitally-savvy or brand new to all forms of tech. We’re calling this ‘equality of online presence’ – and we’re proud that The Space’s support enabled us to offer a space to every Fun Palace to share what they want, how they want. Some share a lot, some share some, the options are open to all.
– our film, beneath the scrolling banner (edited, updated, re-edited and re-edited again by the brilliant Remi Stewart) was filmed by us and by Fun Palaces makers themselves.
– our live images (courtesy of Instagram) and our live info and chats (courtesy of Twitter), in the scrolling banner, allow visitors to the site to see what is happening with Fun Palaces all over the place, in real time. Come the weekend, they’ll be updating still faster! (Yes, not everyone uses Instagram and Twitter, but they’re free, and free is the key for us – how can we make this available to the most people for the least cost? Many FP makers have taught themselves how to use these methods of communication in order to be able to share more widely – many of them are using free technology, in a new way, or for the first time.)
– the map lets you find your closest Fun Palace
– there’s loads of juicy stuff in the blogs – from making a Fun Palace more accessible to how to engage digitally, even when you’ve never wanted to do so before
– and we also have pieces about the key figures behind the original idea and how this version came into being

All of it is ready to (eventually, time and funding willing!) become more interactive, more engaged, more something we can all use – meanwhile it is fully able to share live on the Fun Palaces weekend, to create an archive of the great work that was made, and to be the artwork that WE make it :
– an artwork of the people made of the live engagement on the Fun Palaces weekend and the lead-up (because making a Fun Palace that is a Fun Palace in itself!)
– an artwork of the people made of the images and ideas we created, held as a kind of archive
– an artwork of the people ready to sign up to create again, anew, in 2015

It’s art and it’s science, together, in the same space, at the same time. It’s a Fun Palace. A Digital Fun Palace.

* Joan actually said “Everyone an artist, or a scientist.” I misremembered this and started saying “everyone an artist, everyone a scientist” – and it’s stuck with us. It’s better really, we’re in an age where either/or is not relevant. All the artists I know also love science, use sciences – all the scientists I know care about the arts, are their own artist. We are arts and sciences, with different balances, different focuses, but both. Just like Fun Palaces.

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