Dr. Grazia De Michele is a social and cultural historian. In 2010, she was diagnosed with breast cancer and since founded an Italian cancer activism blog ‘Le Amazzoni Furiose’ (The Furious Amazons) and remains an international partner of the Breast Cancer Consortium.
Correspondence to Dr Grazia De Michele, [email protected].
The first word I managed to utter upon hearing the news that I had breast cancer was ‘why’. Why breast cancer, at such a young age, with no family history or risk factor? It was November 2010. Four months had passed since my thirtieth birthday.
I was living in the UK at that time, but I decided to be treated in Italy, my native country. I kept asking the same questions to all the doctors I met. The answer – ‘it’s impossible to know’ – was always the same and raised a further question: ‘how can a disease whose causes are unknown be cured?’
As I have learned to accept, there is no cure for breast cancer at the moment. The most one can hope for is a NED (No Evidence of Disease) status. According to Cancer Research UK, breast cancer has the highest mortality rate among women dying of cancer worldwide. More and more cases are diagnosed each year. Treatments have long-lasting side effects and may even cause other types of cancer. The quality of life of many of those living with metastatic disease is poor. Yet, the public discourse on breast cancer is dominated by the stereotypical image of the She-ro, the inspiring survivor who has fought with energy and optimism and has won her battle thanks to her ability to take the illness as an opportunity for personal improvement. A dreadful disease, killing thousands of women and whose causes are still unknown in spite of decades of research, is turned into a macabre Pygmalion.
The She-ro has been imposed as a role model by companies exploiting the disease to sell consumer products. In the early 1990s, the cosmetic company Estée Lauder launched an awareness and fundraising campaign inviting women to buy its products emblazoned with a pink ribbon. Many others followed the example to the extent that today it is possible to buy pink cars, appliances, mops and other cleaning tools and even guns. Stories of death, suffering and anger are obscured by the trivializing triumphalism of the pink kitsch.
The criticism towards the breast cancer business and its normative implications is mounting, however, especially in the Anglophone world. The work of scholars such as Samantha King and Gayle Sulik, of grass roots organizations such as Breast Cancer Action and the opportunities of communication and participation in public debate offered by social media are contributing to counteract the dominant discourse. The same cannot be said of Italy, where the branding of breast cancer is coupled with the lack of any chance by patients and social scientists to challenge the reassuring dogmas of the medical establishment in the public arena. The seriousness of the disease, often defined perfectly ‘curable’, as well as the impact of treatments is underestimated by prominent surgeons. In addition, unlike in the United States, in Italy the feminist movement focus exclusively on reproductive issues and disregard those related to disability and ill bodies. As a result, breast cancer is not on their agenda. The Italian version of the She-ro is a married mother, whose strength comes from her husband and children. She does not renounce her maternal duties which help her to overcome the side-effects of cancer treatments.
In order to make Italian women aware that it is possible to change the conversation on breast cancer, in May 2012 I started a blog called L’Amazzone Furiosa (The Furious Amazon). The pink culture and its gendered role models, the alarming increase of the disease among young women and the involuntary exposure to chemicals related to breast cancer were among the first topics I covered. The blog attracted the attention of the public, especially of women whose experiences and feelings did not fit into the mainstream Italian narrative and were interested in making their dissonant voices heard. As a result, the name of the blog was changed to Le Amazzoni Furiose (The Furious Amazons) to highlight the need to look at the issue from a collective rather than individual perspective. Together we wrote a manifesto entitled Il cancro al seno non è un destino (Breast Cancer is not a Destiny) asking for more investment in research on the causes of the disease, public information campaigns on involuntary exposure to endocrine disruptors and a realistic representation of women’s experiences by media. The next step will be to go beyond online communication and try to create a strong public opinion movement able to have a real impact on decision makers.