Thursday, 17 February 2011

There is an alternative to pink!

I've been struggling with how to express my feelings about the pink breast cancer ribbon without causing offence, or diminishing what is truly a valuable awareness-raising tool, a sign of moral support and a source of comfort for many. Then the universe goes and plops the beginnings of an answer in my lap. I'm in the car coming back from Argos with my husband driving and find myself screeching STOP!!! as we pass a shop window. I catch a glimpse of blue painted torso and red doughnut breasts. I fling open the car door and roll over a few times as he speeds away. Not really. I make him go around the block and pull over safely, kids. (Can you tell I'm excited? RARRRRR!!!)

Turns out the painting is a screenprint (in this case, on a tote bag) by an illustrator called Lucie Sheridan, and as soon as I see it I know just why the pink ribbon disappoints me. The pink ribbon makes me think, first, that breast cancer is a female disease. Well, yes it is mostly, but men DO get breast cancer, and can you imagine how alienating and disturbing it is to their sense of self? God knows it's hard enough for women. The pink ribbon also reinforces the idea that it's a one-size-fits-all disease. It isn't. There are so many different types of breast cancer, affecting each and every person differently. And we don't all want to wear pink - nothing wrong with it, I just find I can't comfortably align myself with it, for whatever reason. So. The bag has given me an idea. Hurrah! More soon.

Tuesday, 8 February 2011

Changing the world one orange at a time

At one of my first Operation Orange workshops, in which I use craft (to help people understand breast surgery and reconstruction) and Pimms (to get them in the mood), it just so happened a design historian was in the audience. Deborah Sugg Ryan has been observing the culture of craftivism that's all around us — that's craft + activism (more on that below) — and has been working on a proposal with a colleague, Fiona Hackney, for an upcoming Design History conference on Design Activism and Social Change.

Deborah's been very careful to point out to me that her document is still at the proposal stage, but she is letting me reproduce the abstract now because, well, a) it's so cool and b) my orangey fun gets a mention. The abstract picks up on some fascinating stuff. I had to start by looking up antimacassar (they are practical and often decorative squares draped over the back of the sofa to prevent greasy marks being left by well-oiled hair. Edwardian men were partial to a bit of 'Macassar' oil.) And the list of radical craft organisations is simply inspiring, and worth looking into.

‘Under the Pavement Lies the Antimacassar’: Quiet Activism and Radical Domestic Crafts
From self-proclaimed Stitch ‘n’ Bitch groups to ‘yarn bombing’, the social and political activism of the craftivism movement (e.g. Betsy Greer’s Knitting for Good),  ‘stunt’ and ‘extreme’ knitting, the work of artists such as Freddie Robins, the Ravelry knitting community, Etsy and the vast array of blogs, websites and publications such as Dominiknitrix, Hand-Made Nation, and  DIYcouture that market making and amateur crafts, we are witnessing a seemingly unstoppable resurgence of interest in traditional ‘women’s’ crafts. Any consideration of crafting involves a complicated critique when crafts in the workplace (mainly undertaken by men) continue to be presented as resistant, in contrast to women’s home craft, which is for personal pleasure or decorative purposes.  When property developer and tv presenter Kirsty Allsopp entreats us to make things for the home, as a writer on the Craft and Sustainability website recently observed, does this represent a critique of capitalism or a return to ‘traditional values’?

Through a selection of contemporary case studies this paper argues that what embroiderer Deidre Nelson terms the ‘quiet activism’ of craft practice undertaken at home, in public spaces or Minahan & Cox’s virtual ‘third spaces’ (blogs and facebook pages), mainly but not exclusively by women employing traditional skills, is, and has always been, radical.  Kelly Stevens’ ‘Operation Orange’ (using craft skills to empower breast cancer patients and educate health professionals), the ‘Ohsewbrixton’ sewing co-operative, the Shoreditch Sisters WI group for whom ‘knitting and making jam are an act of rebellion’ and with their utility-inspired slogan, ‘Use it up, wear it out, make it Do and Do without’, represent a new generation of young women who find no contradiction between making and mending and feminism.  For them crafting foregrounds health, ethical living and collective action; values traditionally embedded within the domestic crafts and women’s lives.  

Thursday, 3 February 2011

Cure the body, but don't forget the mind: Body Image Research

A fellow patient recently told me about the work of a Clinical Psychology PhD candidate studying breast cancer surgery and body image. Helen La Vesconte is looking for women who are about to undergo mastectomy with or without reconstruction to help her research:
"As part of the University of Southampton, researchers and clinicians are interested in studying the beliefs that people have about their appearance and its influence on their life. Body image and concern about appearance can have a significant impact on people’s mental and physical health."
Helen notes:
"The Australian National Breast Cancer Centre suggested in 2004 that all BCNs (breast care nurses) and cancer services should highlight potential problems in body image and sexuality following surgery. There was a similar thing in a 2008 UK paper, basically saying that what cancer services considered "psychological distress" needed to be broadened to include body image and sexual difficulties following treatment."
Although so many women struggle with body image after losing a breast, in the UK at least there is still not consistent psychological support or preparation for that loss. Services vary wildly. Body Image Research has a Facebook page that proves there's a gap that needs to be filled; over a thousand women have signed up simply to share their experiences of body image issues, and for some it seems there is simply no other outlet. It's a fantastic thing to be able to rid the body of breast cancer. I think it would be a fantastic thing if we could rid our minds of the peculiar shame that too often ensues after surgery and treatment. I hope this study goes some way towards making that happen.
You can find out more about the study or sign up at

Beastly blessings

I was having a cup of tea the other day with a friend who's also had a mastectomy and we were comparing our breast reconstructions and talking about how we've felt about our bodies during our recovery. Breast surgery eliminates all sorts of inhibitions, I've found. I showed her mine over the top of my cuppa (white, no sugar) and then we discussed hers over her cuppa (black, two dunks). We were talking about how far we'd come in accepting the enormous change to our bodies.

We're not there yet -- both of us have our Frankenstein moments. So many women I've spoken to self-conciously refer to themselves as unattractive or even monstrous as they deal with their unasked-for body changes — whether it's losing hair from chemo, or losing a breast, or having a lumpectomy. I was so relieved to have my disease caught early, I assumed I wouldn't care what my body looked like as long as the rogue cells were all gone. Getting early treatment was a blessing. Yet I was surprised to feel so down about it at various points. I did (and I do) care. I've found dealing with body image a lengthy process; an awkward voyage of self discovery.

For me, it has helped to look back at photos of the state my breast was in when, soon after the surgery, I developed necrosis. A ping-pong ball of new breast, made from my own back (LD) muscle, withered and died. The black-edged hole that was left behind gave me a graphic window into the inside of my body: shiny, mincemeat pieces of pink-red muscle and mustard fat. At the time, it didn't bother me; I was perhaps still shell-shocked at the situation I found myself in and perversely proud of having complications (possibly due to feeling guilty at not having chemo like other patients? I don't know).

After a while though, it did upset me. It took so very long to heal. And oddly, I felt more ashamed of the way it looked when the worst was over. Close, but not close enough. But look now; here we are. I'm almost at the end of my reconstruction shenanigans. I've gained some amazing insights into the world of surgery, the extraordinary craft of the surgeon, and the resilience and power of the body.  In April, I'm having minor surgery to tidy up the sinewy, white and pink speckled scar, the evidence of my skin's desperation to heal itself (leaving hypertrophic scarring, where the skin stages an uprising and 'overheals'). After April's tidy-up, I shall have an areola tattoo. And then — though I can't take it for granted, not yet, perhaps not ever — the physical haul will be nearing closure.