Has Komen ‘lost the brand’?

Don’t worry, you’re not really on Komen’s website

A tongue in cheek guest post here from Ronnie, a born satirist. The thinking being that satire might be able to get to the heart of a serious matter, in a way that more straightforward social critiques sometimes don’t. 

“First, a word of explanation may be necessary for our readers not based in the United States. ‘Komen’ in this post is ‘Susan G. Komen for the Cure’ - the most widely known, largest and best-funded breast cancer organization in the United States, but one that has been criticized for its use of donor funds, as well as its choice of sponsor affiliations and its role in commercial cause marketing. In early 2012 Komen took a controversial decision to cut its funding of Planned Parenthood, a decision widely seen as politically biased and revealing Komen’s close association with the Republican Party. The decision was reversed within a few days, but the damage to Komen’s reputation is considered by many to be serious, permanent and possibly final.

Over here in Liverpool, I’d heard of Komen, of course. But my interest was particularly piqued when a British newspaper, The Guardian, started reporting in detail on the Planned Parenthood issue, quoting our friend Gayle Sulik, talking about pink culture organisations in general, and Komen and its recent difficulties in particular:

‘Komen is the largest and is held up as the gold standard. But it is just part of it,’ she said. ‘There’s the conflict of interest, with regard to the companies associated with pharma and diagnostic tools, who stand to benefit from treatment. Then ‘pinkwash’, where products might be carcinogenic, to unhealthy products like M&Ms. I’ve even heard of Pub Crawls for the Cure. It’s part of the general culture.’

Gayle Sulik, sociologist and author of ‘Pink Ribbon Blues’, said pinkwashing is only the beginning of how ‘breast cancer culture’ undermines women’s health. Sulik, a researcher at the University at Albany Department of Women’s Studies said that the culture has caused a split in advocacy groups between those focussed on awareness and education, like Komen, and others.

‘Komen is under investigation by the public. So far I don’t see the public being very forgiving. There is so much product placement, so many huge events,’ said Sulik. ‘It will be interesting to see what happens next.’

So then, on with our tale. Let’s see what might have happened next…

Why don’t they just ban it then?

Water: free, clean and safe - 'let's take back the tap'

One day last summer I was shopping in a camping shop. I find the product I want and go to pay. At the till I am offered a special deal – a half price product from a selected range of items which include a very attractive clear plastic drinks bottle. I express interest in it and the assistant hands it to me. You see, I’m interested in drinking bottles because I  replaced our refillable aluminium water bottles for lightweight stainless steel ones. Why did I do that?

Well, the previous bottles we used, the aluminium ones, are lined with a coating to ‘ensure a fresh, clean taste and no metallic aftertaste’. And the manufacturer of those bottles reassuringly say that the chemicals that make this coating are now ‘non toxic and fully compliant with all EU and FDA regulations.’  Although given the slow rate of legislation I wouldn’t be convinced that means they’re completely safe.

More importantly though the lining of the new bottles don’t contain the chemical BPA or Bisphenol-A. I’ve written about BPA before. It’s widely used in plastics that come into contact with food and is implicated in breast cancer and other diseases. Throughout Europe it is being banned for use in baby bottles, because of concern that the heating of the bottle makes the chemical more harmful. Amongst the campaigners I know there is a general concensus that the baby bottle ban is just the start, and that a total ban on BPA will follow.

Being Sarah: Where next?

Today’s post sees the return of Fiona Shaw of - Wordscapes, publisher of ‘Being Sarah’. You last met her earlier this month, when she wrote ‘I just didn’t know’. And in fact, it was Fiona who gave me the idea of doing a blog each day during October. A mighty task which she is here, helping me to complete! Thanks Fiona.

Well, that’s my introduction. Fiona, being a ‘proper’ publisher and editor, has written her own! Here we go:

Being Sarah has taken on a life of its own – and certainly not one I imagined when I first met Sarah in February 2010. It has been 18 months of achievements and awards, campaigns and challenges. Work has blurred into life and clients into friends; questions have been asked – some answered – and perceptions, perspectives and priorities changed. Fiona Shaw takes a look back at what’s happened, and what happens next…

October 2011 – my second Breast Cancer Awareness Month, ‘working’. It has been a whirl of a year, packed with achievements; the book – my first Print on Demand book; a website; the launch; a social media campaign; awards and invitations too – to Buckingham Palace, to the BMA’s Book Awards; Sarah speaking at the European Parliament, across the country here, and being invited to speak at an event in the States.

Since the launch she’s been interviewed on Woman’s Hour and Radio 5 Live, by national papers including the Daily Mail and Telegraph; she’s made films and impassioned speeches in public. She’s made an impact, which goes far beyond just getting people to sit down and read a book.

I will always be tremendously proud of ‘Being Sarah’. If you haven’t yet, please read it

A Universal Declaration of Human Might

At Home on the Earth, Gemma Jerome

Today’s post is written by a relatively new friend, Gemma Jerome. Gemma is an environmentalist, an academic, a social entrepreneur, a gardener, a walker in the hills, a bicycle repairer and so much more. I gave Gemma the vaguest of briefs, to write me ‘something around the environment and breast cancer prevention’. And what I got was this magnificent polemic. We said we’d be getting more political this week. Because people are reading these blogs, and following the links to the information and science, and asking ‘What can we do?’ Well read this. Then let’s decide where we take it next. 

“Here I am in the Yorkshire Dales, heading in to Malham Cove. Through this great tumble of debris of a bygone age, we felt like intrepid explorers setting out on a journey of discovery. Our feet, nimble on the paths of our towns and cities, now stumbled on the rocks unpredictably placed beneath us. I had an overwhelming feeling of how small I was in this landscape, and above all, how beautiful things are when you just let them be.

The landscapes within me: As director of my own social enterprise, At Home on the Earth, I have had the pleasure of working with Sarah and Ronnie. Thanks to  their unique approach to values-led business planning, I was able to locate my business ethically and emotionally. In this way Sarah and Ronnie stood with me at the top of the hill and side by side we read the moral compass. Through reflection we are able to set off in a new direction, or even the same direction but with a renewed sense of purpose. This is what they mean by ‘a sense of place’.

I now know I am emotionally driven by the possibilities of how we could live differently

The alternative orthodoxy?

During the summer I was invited to take part in an event, a workshop… I’m not really quite sure what to call it. It’s described as a day to explore how a group of people can support each other as we walk the same path together. How are we connected? Well, we’ve all shared some sort of spiritual crisis that has caused us to look for support, and that’s what we have in common.

I was invited some months ago and I felt that given how isolating and lonely my ‘journey’ has been that this was something I wanted to explore. As I drive to the destination for the day I reflect on the years that have led to this. This ‘path’, although I hesitate to use words like journey and path, the analogy for something that might imply I had some choice in taking this ‘diversion’. The day after diagnosis back in February 2007 I’d fallen into a nightmare.

“I found out that a number of people refer to breast cancer as a journey. Well, yesterday certainly didn’t feel like that, it felt like a nightmare, but the sort of nightmare that would end eventually and I would emerge blinking and things would be ‘normal’ again. But I don’t think there will be normal again.”

I think, back then, that I will rejoin the main road, that this is a diversion… and I suppose I almost do, at times now, have a sense of being back on the main road. The essence of life I wrote about earlier in the summer as I finally – after four years – have a summer – greedy, wanting to ‘snatch’ it, keep it, knowing that it may be temporary. But to enjoy it. Now.

The evening before the event I talk to Ronnie and I wonder if I really want to go. I mean do I want to continue to go  to things that I would only have the opportunity to do because of breast cancer? Or do I want to leave it behind?

What does October mean?

Extract from Being Sarah:

October is breast cancer awareness month. Yes I support awareness, of course I do. We are all familiar with that phrase, ‘Early detection saves lives’, much used to encourage us all to take some responsibility for our own health. That somehow it is up to us, that we can stop this spread of breast cancer. I’m starting to think that it’s not up to us, actually.

And in October breast cancer becomes fully pink. Maybe you see all this pink stuff, all these things you can buy and think it is a good thing. That the money that is raised goes to research, that somehow we’re just a break away from some major research that’s actually going to end this escalating statistic, the incidence of breast cancer, now increasing rapidly in younger women, women like me and even younger. It has a big mass appeal, almost sexy really in marketing terms, this pink charity stuff, it’s good business sense. Does it make me really believe that the businesses that ‘support’ breast cancer awareness month actually care about me? Am I being cynical to think it might just be good business sense?

I want more

Nearly October. Autumn is here.

I was looking back through my recent blog posts and thinking that it actually looks like I’ve been having a good time lately. And yes, I suppose I have. But I recognise that they are good times. There’s plenty of other times when I’m worrying or being annoyed about the admin of sorting out medical appointments – yes, still. But on the whole, mostly, this summer has been good for me. And I’m glad.

And now it’s autumn. The evenings are noticeably shorter and cooler now, the curtains drawn before 8pm. The leaves are turning. And soon it will be October.

Ah, October. Breast cancer awareness month. You’d think I’d like that wouldn’t you? What with wanting us to eradicate breast cancer forever. Well, yes awareness is good. But awareness of what? That there are so many pink charities and pink events out there that if you contribute to one of them then you’re helping us, people like me. That we’re nearly there – winning the war on breast cancer. Well, actually, we’re not.

Recognised

Over the last few weeks the questions I have most often been asked are, ‘What will you wear?’ and ‘Have you got your hat?’

Why?

Well, next week, on Tuesday 19 July, I will be attending the Queen’s Garden Party at Buckingham Palace. That’s me and nearly 8,000 other people.

When I received a letter back in January this year I was pretty non-plussed about it, and assumed that the invitation to the Garden Party was some sort of ‘duty’ like jury service. I didn’t realise, at the time, that it is in fact considered an honour to be invited.

The Independent on 22 May 2009 described the Garden Parties as follows:

“An opportunity for the royal family to meet and greet a cross-section of British society and thank them for various good deeds they have done. The emphasis is on rewarding the unsung heroes and heroines of British society rather than the usual crowd of toffs and diplomats who regularly hob-nob with the Establishment.”

Ah, I see, I am being recognised. I like that. I have been heard. That is what I wanted.

Seeing through the pink cloud?

It’s days since I wrote anything longer than a scrawled note. Actually it’s weeks now. Not my usual way. Because I’ve been sick. The sort of sick that confines you to bed. The sort of sick where you don’t talk much. Just lie around waiting for ‘it’ to pass. Feeling too sick to do anything else. That sort of sick.

The sort of sick that starts with feeling a bit ‘out of sorts’ and weepy. Then it’s a cough and then you think you have a cold. I cancel everything in my week, that was last week. No squash, running or swimming. No tai chi class. I am grounded, by choice. How easily I slip into being sick.

Six days later I am still coughing and wheezing and my ears and chest are burning. Terrible headaches which I think are sinus pain. Coughing. A lot. Horrible chest-wracking gurgling coughs that send me into spasms. Have spent all my time lying down or clutching my steam inhaler, hoping for some end to this respiratory discomfort. I manage to get dressed and go to my doctor. He prescribes antibiotics. Yes, none of this is life-threatening. Not really serious, not compared to breast cancer. And yet, I am paralysed by it.

I find it easy to continue to cancel my commitments. To take to the horizontal position. To have the table next to me, whether in bed, or on my chaise longue, fill up with the deitrus of the sick. Glasses of various liquids, water and juice for my limitless thirst. Tissues. Used ones scrumpled on the floor. Oils to inhale and lip salve for my nose and lips. Throat lozenges and paracetamol. In my ‘previous’ life, the life I had before breast cancer, I would feel this was a waste of time, I would be anxious to be well again. But now, now, I don’t feel that. I can listen to my body. I am grateful for the oasis of tranquility, the space where I can rest.

What’s the word?

What’s the word to use to describe what I am – in breast cancer terms that is? I personally don’t like the word survivor. I choose not to use that particular ‘badge’. Because, as Barbara Brenner very pragmatically points out, many women who are referred to as survivors at one time, are now dead. She’s had breast cancer twice, and she does not feel she is better or different than the thousands of women who have died of the disease. She’s just luckier so far.


And so, if I am a survivor – does it mean I ‘fought’ harder? Does it mean that those who don’t survive, and that could include me, did not try hard enough? Hard enough to stay alive?

But, what do I say about myself? Well, when I have to, I’ll say I’m a ‘breast cancer patient’ – which technically I still am. I think the 16 hospital and doctor appointments I had in 2010 (a good year in appointment numbers) and being on prescribed drugs does still qualify me as a patient. But what’s the word for – my life is changed forever? My partner’s life is changed forever? By breast cancer. There isn’t a single word to describe any of that.

Survivor, to me, sounds too triumphal, too final, like it’s finished – all over. But breast cancer is not like that – as I am finding – now approaching four years from diagnosis. Katie on her Uneasy Pink blog has recently talked about using the ‘s’ word, simply because she couldn’t find a better way to describe herself. Survivor? Warrior? Victim?

Gayle Sulik, author of Pink Ribbon Blues, writes, “The exclusivity of the term survivor focuses attention squarely upon those who are living, essentially erasing those who are dying from the disease.” Exactly. And that’s part of the problem, our seemingly stubborn refusal to talk about breast cancer as a disease that kills. And so it’s just a condition we treat and nothing needs to change, in terms of preventing the disease happening in the first place.

And, although I started writing here about what to call myself, I have slipped seamlessly onto my current favourite subject – cancer prevention.

So, what’s the word? Well, for me, at the moment it’s cancer ‘campaigner’. It’s someone who’s living with the ‘experience’ of cancer. But it’s not ‘survivor’. I haven’t survived. Not yet.