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…

The gift of breast cancer? I’d like a refund.

Today’s post is another piece from Rachel at The Cancer Culture Chronicles who, at her own proud admission, likes a good rant. I’ve also written about the expression ‘cancer is a gift’ and it’s something that’s got Rach fully into ranting. She wrote this piece last November. ‘The gift of breast cancer,’ she says, ‘it doesn’t fit. Can I have a refund?’ For your reading pleasure…

“I would never wish cancer on anyone. But I wouldn’t give back the experience either.”

“You are forced to either look upon the experience as a curse, or a lesson in life/challenge to learn from and grow from. ie., a ‘blessing’!”

“These are real quotes sourced from comments posted to an article written by Eve Ensler (author of The Vagina Monologues) entitled, The Gift Of Cancer.  That’s right. The. Gift. Of. Cancer.  Gift. Cancer.  Really ?  These are not words that I would ever wish to see in the same sentence. Ever. And yet, I seem to be surrounded by this kind of sentiment.

Are there people out there who actually see cancer as a gift ?  An experience they would never give back ? A blessing ? Are people now drinking the chemo ?

This week I had plenty of opportunity to ponder my own particular gift and associated blessings. As I was injected with another vile vial of radioactive goop by Nurse I-Couldn’t-Hit-A-Vein-If-My-Life-Depended-On-It, so that my entire body could be scanned for more Breastmas-Tree-like lights whilst lying perfectly still in a dirt-nap state in a machine that is strangely reminiscent of lying in a coffin.  (Now, not personally knowing any vampires outside of Sookie and the gang from True Blood, I can’t attest to the accuracy of this statement, but I think the only difference might be that the occupant of said machine has a pulse).  Anyway, before I launch into a dull tirade on the indignities of the whole PET/CT scan thing, let me get back to the point of this post.

From a sociocultural perspective, much of what I see and hear in the media regarding the breast cancer “experience” seems to carry with it an aura of calm, peaceful reflection and contemplation.  One could be forgiven for thinking that breast cancer is simply a journey on a well-trodden path

Two weeks in: broadening the conversation

Some weeks, chocolate becomes a necessity

Guest editor Ronnie here for the weekly round up during October.

“Another Sunday, and now we’re two weeks into our self-imposed task of publishing a blog-a-day on here. The week began with ‘The ‘M’ word’. This turned out to be one of Sarah’s most popular posts. Metastatic breast cancer has been our main theme this week, and when Sarah was writing this post I said to her, ‘I think for some people that post won’t be about information and opinions. It’ll be news.’ And so it turned out. Being posted on as ‘new terminology’ by ‘Mid-Week Balance’. It also marked the first appearance this week of Sarah’s great friend Rachel, of ‘Cancer Culture Chronicles’, saying ‘there are times many of us feel as though we’re barely surviving’. From here on in, it was really Rach’s week.

Are we really racing for a cure?

Nancy Stordahl

Today’s post is the first from one of my fellow bloggers. I started blogging in October 2010 when my book was published, and gradually started to find other bloggers who related to my writing. Now I find myself with a close circle of dear friends, most of whom I’ve never met in person, but they have become important to me in a way I could never have predicted.

This piece is from my good friend Nancy Stordahl who lives in Wisconsin, pictured here with her dogs Sophie and Elsie.

Nancy’s mother died from breast cancer in 2008. Two years later she was diagnosed with breast cancer. Her blog Nancy’s Point tries to make sense out of these life-changing situations by sharing her personal experience. Nancy writes about various issues around breast cancer including grief and loss, and always engages her readers in thought-provoking discussions.

Yesterday I wrote about a 10K I’d just run and reflected on the messages that I might give out as a ‘survivor’, and whether I looked too triumphal in my actions. Nancy very kindly responded, ‘I think the most important messages you are sending out are the ones you are sending to yourself. You are alive. You did it. You are living your life the best way you can.’ Well, thanks Nancy!

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?

Pink’s not wrong. It’s just not right enough.

Today’s post is by my partner Ronnie Hughes. Ronnie’s guest post last month about being my carer throughout breast cancer treatment  was extremely well viewed and resonated very deeply for many people. 

Here Ronnie gets into a political persona to discuss the subject of  ’pink’.

“The United States may not have much of a healthcare system (Hello, American readers) compared to our NHS. But you are brilliant at some things, like music and TV. In fact, for the last couple of years, having finished The Sopranos, Sarah and I have been working our way through the magnificent ‘The West Wing’, really feeling like we know all the major, fictional White House characters. Particularly admiring ace political Democrat strategist Josh Lyman.

After watching an episode a while back, Sarah turned to me and said, ‘You know all this pink stuff, what would Josh make of it?’ And in full-on Josh mode I replied ‘It’s not wrong, it’s just not right enough.’

‘Think about it.’ Staying in Josh mode, bear with me here, ‘Well obviously all the pink products are junk. But what we see here with all this pink activity is both needs and opportunities.’

‘The need to do something, to combine, to help, to empathise. To be with other breast cancer patients, or their carers, or their friends and family. People like you. The need to feel you can contribute something towards sorting this disease out. And the need to celebrate sometimes, all together.’

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.

We must speak the truth

There’s a subject that raises its head every so often in the cancer world. Positive thinking. Ah. Yes. You know, that fuzzy feelgood factor that’s supposed to make having cancer not that bad? And it’s a subject that brings very strong reactions. Which I like actually.

Katie on Uneasy Pink has just started a series of blogs on the subject starting with the ‘cancer personality’ where patients are blamed for causing their cancer. (Yes, really.) And then on her Facebook page Chemobabe posted,’It’s not just support groups that insist on positivity. There are people who claim that a lack of positivity causes cancer.’ Which is ridiculous isn’t it? And one of the responses to this had me punching the air and shouting out loud back at the computer. I had planned to edit this comment. But, actually, it’s far too good, so I’ve just highlighted a couple of phrases, and include the comment here – with her permission and with full credit to Lorrie Sparrow – please read on…

I’ve been reading your links this morning and oh, I’m angry. This speaks to a more insidious problem with our society and there seems to be a number of things going:

1) Traditional Gender Roles. Even in this enlightened age we live in, there is still a current of “smile and be a good girl” at the heart of being a woman in today’s culture. Good girls don’t complain. Good girls make it work. Women, with or without cancer, are under tremendous pressure to perform in a positive manner. It’s the expectation of society and is enforced by the images in magazines telling us to look perfect, be the perfect lover, have your children perfectly dressed and educated, keep your career going full tilt and only up, cook the gourmet meal and make sure the house is clean, all while wearing Manolo’s and oh by the way, in your downtime or at your desk, firm your butt with these booty-licious desk exercises. This “be positive” culture within breat cancer groups seems to be taking this pop culture mentality to the most grotesque level. “So, not only look good - don’t complain about the disease you have which is turning you inside out. Successful women and cancer survivors? Yeah, those bitches don’t complain. Good girls don’t, so you with the port? Shut it and smile already.”

Real?

Summer camping at Hill Holt Wood with Ronnie.

I’ve just been away on a short camping trip with Ronnie in a beautiful wood in Lincolnshire. We had one night alone and then spent the next two days with a group of people from Hackney Community Transport who we’ve been working with over the last seven months on their ‘social enterprise champions’ project. A fabulous experience. And it didn’t rain!

Back at home, and I’m going through my emails and there is one titled ‘Sad news about Jane Smith’. No, Jane Smith is not her real name, but she could be one of thousands of women like me, who’s being diagnosed with breast cancer in their early 40s.

I know immediately that she has died. Of secondary breast cancer. Of course, the email does not mention that, it says she had ‘a long illness’. We are spared the details. I feel so many mixed emotions. Including anger.

Show me the money

A couple of months ago I was just going into the swimming baths and a woman came in behind me and asked the receptionist, ‘Could I leave some leaflets for you to display about a local healthy eating and weight loss group?’ And the woman behind reception said without pausing, ‘No, we don’t display leaflets.’ So the woman with the leaflets turned round and left.

But that was blatantly not true, because on the counter, right there was a cardboard leaflet holder containing leaflets for a cancer charity’s ‘Race for Life’ event taking place in Liverpool. This event is not for a breast cancer specific charity, but the leaflet has a picture showing women in pink t-shirts, and the irritating slogan of ‘Join the girls’, (well it irritated me), implying that this is an event for women. At the time I had a sense of feeling that it was wrong, a health facility supporting a national cancer reearch charity, but not a local health group.

And, the ‘Race for Life’ event happened this weekend. I was reminded of that because one of my squash friends told me she was taking part in this event. I said, ‘I hope you’re not wearing a pink t-shirt!’ and she laughed. But she told me she was doing it with her friend, whose boyfriend’s mother has just been diagnosed with breast cancer and is now being treated. And she wanted to do something.

I totally get that. She wanted to do something.