Cancer's not pink

Women are rebelling against the fluffy imagery surrounding breast cancer

Tutu has her head shaved before chemo treatment for her breast cancer.

Kristen Tedder, or Tutu as she is known to friends, was never going to react to breast cancer in a conventional way. This is the performance artist whose Doris Day meets Courtney Love routine had the Gallagher brothers whooping for more at a London club in the late 1990s.

Her latest project is Punk Cancer: a visceral, disrespectful and decidedly un-pink approach to fighting breast cancer. "All the pink, fluffy breast cancer imagery didn't do it for me, so I went down a different road," Tutu explains. "I learned to love breast cancer because it's part of my body and it taught me a lot about my life. But I also wanted to kick its ass."

When we meet, Tutu, 45, is wearing a T-shirt, created with London label Earl of Bedlam. It features a stencil of herself, boldly one-breasted, and, in Never Mind the Bollocks lettering, the phrase: "Cancer Sucks: Fight it, Love it, Live it, Survive it."

The image is taken from an exhibition Tutu collaborated on with photographer Ashley Savage. Tutu was diagnosed in 2009 and the pictures, which date from that time, range from a beaming Tutu posing Bettie Page-style on a radiation table, to an anarchic hair-shaving session pre-chemo. In between, are some starker images taken when she was not feeling quite so strong.

Pink Ribbons, Inc, a Canadian documentary that is released this week in the UK, makes a similar point by taking a look at the industry that has grown around breast cancer. It features interviews with critics of the disease's "pinkification", including veteran activist Barbara Ehrenreich who was recently diagnosed with breast cancer herself. "I wish they could talk to all the women who have been through breast cancer," she says in the film. "And [I] resent the effort to make it pretty and feminine and normal. It's not normal, it's horrible."

Ironically, says the film's producer Ravida Din, breast cancer has become glamorous. "You can attach more cliches about femininity to breast cancer," Din tells me. "Moreover, it can be 'dressed up' by corporations."

In fact, the pink ribbon was originally orange. Conceived in 1990 by Charlotte Haley, a 68-year-old American, it was a grassroots protest against the fact that only 5% of the US National Cancer Institute's budget was going towards cancer prevention.

When Estée Lauder asked to use the logo for a breast-cancer awareness campaign, Haley wanted nothing to do with it, saying she had no wish for them to use the ribbon as she felt it was too commercial. So the company changed the colour to pink, because research identified it as the most non-threatening, soothing colour – everything a cancer diagnosis isn't.

Din believes that anger, used in the right way, is the way forward. "We want to provoke a new conversation around the breast cancer culture we've created," she says. "Don't just raise money and hand it over. Think about where you want to invest it. Are you OK that almost all research money is going to pharmacological research and almost none (still less than 5%) on why we get it in the first place?"

Annie Middleton, 42, believes that breast cancer awareness has reached a crossroads. She was diagnosed with it at the age of 30, when she had two young daughters. Her journey lasted a decade and included a double mastectomy then reconstruction, which was completed last year.

"When I was diagnosed I felt as if I'd already joined the pink club because someone had chosen the colour a long time ago. But it does keep some people out. I think of pink as a flesh colour, which isn't great for black women."

In 2004, Middleton organised a breast cancer awareness exhibition, Modern Amazons, that was shown at Selfridges in London. Notably, it didn't involve celebrities and instead consisted of 30 real women photographed showing their mastectomies and sharing personal stories.The billions spent on research have not been able to help Tutu. The disease has spread to her bones and she doesn't have long to live. (We learn from Pink Ribbons, Inc that metastatic breast cancer is still lamentably under-researched). But Tutu wants to change things before she goes. She thinks other women would benefit from recording the process as she did.

"They don't have to be as out there as me," she says with a chuckle. "But it really helps to let out your emotions about how you feel about it."