By Grazia de Michele and Cinzia Greco
In her powerful essay “Illness As Metaphor” Susan Sontag drew a comparison between what she considered to be two of the most metaphorized diseases in recent history: tuberculosis and cancer. The former, represented as an illness affecting sensitive and weak people in the eighteenth and nineteenth centuries in popular imagination gave the sufferer a romantic allure. If “the reality of such a dreadful disease [had been] transformed so preposterously,” the same – according to the author – could not be said of cancer, “a disease which nobody has managed to glamorize.”
Sontag was writing in 1978, whilst receiving treatment for breast cancer. Cancer, and particularly breast cancer, was taboo at the time, a shameful secret to be hidden. Only a few years earlier, in 1974, the “coming out” of Betty Ford and Happy Rockefeller who revealed publicly that they had had mastectomies to treat their breast cancer, had broken the silence. Yet this revelation by two prominent figures still did not change the attitudes of ordinary women. Breast cancer remained a strictly private issue.
Since the early 1990s, things started to change in the United States. On one hand, breast cancer was strongly politicized by feminist and environmentalist movements throughout the country. On the other, the disease was quickly swallowed up by market-based philanthropy in alliance between corporate capitalism and the nonprofit sector.
The story of the pink ribbon is particularly telling of the how concerns brought forward by the breast cancer movement were appropriated by organizations and companies, including pharmaceuticals, nonprofits, and the medical establishment at large. Breast cancer, cast strictly as an individual problem to be solved with early detection and aggressive treatments, was no longer stigmatized as it had been in the past. Instead, it had become an opportunity to celebrate the virtues of “survivors” and the self-empowerment potential of the disease.
The first breast cancer ribbon was not pink. It was peach. Charlotte Haley whose daughter, sister, and grandmother had been diagnosed with breast cancer gave out handmade peach ribbons along with a card that asked people to wear the ribbon to bring attention to the fact that only a tiny fraction of the National Cancer Institute’s annual budget went toward cancer prevention. Haley’s ribbon gained enough visibility that Self Magazine and the Estée Lauder companies asked for permission to use the peach ribbon in their second annual breast cancer awareness campaign. Haley refused. She did not want the peach ribbon to be commercialized and lose its political potency. Haley’s aim was to build a grassroots movement, not a brand logo. To avoid legal sanctions, Lauder and Self changed the color. The breast cancer awareness ribbon became pink, a color carefully chosen for its association with femininity.
Over the years the pink ribbon not only became a common symbol for breast cancer, it became a powerful and pervasive culture. No longer just a matter of selling products, women are sold reassuring but false notions about what breast cancer actually is. Unproblematized and stripped of political implication, breast cancer is portrayed as a rite of passage, a transcendent and unquestionable journey, curable and winnable. In reality, this disease is not the same for everyone. Few want to admit that breast cancer kills — not those cancers confined to the breast, the primary cancers, but those that become metastatic (spreading to distant organs, leading to life-long treatment, trading costs and benefits, until all treatments eventually fail). Such realities are muffled by louder, upbeat messages of survivorship.
The she-ro, the optimistic ‘survivor’ who fights her personal battle with breast cancer and wins, is the protagonist of the fairy tale that represents today’s breast cancer story. Her exploits and victories are celebrated in books, movies, magazines, and at fundraising events. There is no room for characters with different stories to tell. Indeed, the typical she-ro is middle class and heterosexual, most often white and young, with her sexuality and femininity wholly intact. Stories of difference, of suffering or rebellion, of death, threaten breast cancer’s caché and therefore the dominant narrative. As a result, they are silenced.
People with metastatic (Stage IV) breast cancer face ongoing physical challenges that make it even more difficult for them to make their voices heard. M.G., a 40-year-old Italian woman living with metastatic breast cancer writes:
“For every lucky ‘heroine’ who, despite illness, surgeries and treatments, manages to do more of everything, there are thousands of women who have to go to hell and get back many times.”
M.G. wrote these words in an abstract she sent to us when we put out the call for submissions for this project. Although her abstract was selected for inclusion in the Demystifying Breast Cancer collection, she was unable to finish her story because of a decline in her health.
This special issue of the Breast Cancer Consortium Quarterly is a small but important attempt to challenge dominant discourses on breast cancer, giving the floor instead to dissonant experiences that rarely make their way to public outlets. The questions we wanted to answer through the stories of people who have had direct or indirect experiences with breast cancer were many.
For example, what does it mean to live with breast cancer and not want, or be able to, identify with the dominant image of the she-ro? And, how do social conditions, economies, geographies, backgrounds, and sexual orientations frame this experience?
Living with breast cancer, confronting death, and expressing oneself to spur authentic and open communication about this disease is a key focus of this special issue. The stories we present offer a demystified view, reflecting the lived experiences of women diagnosed with breast cancer in different parts of the world, from the United States to Belgium, Israel, Italy, Spain, and the United Kingdom, belonging to different social classes and ethnic backgrounds, and with different sexual orientations. Together, they offer an unprecedented look into some of the most overlooked aspects of breast cancer’s multifaceted reality.
In this Collection…
The story of U.S.-born Tutu Tedder told by her friends Stephanie Theobald and Ashley Savage, reveals how this queer performer spent the last three years of her life in the U.K. subverting traditional representations of her illness. Stephanie, a writer and journalist, gives an impressionistic and vivid portrait of Tutu through the memories of their friendship, until Tutu’s death from metastatic breast cancer in 2012. Ashley, a photographer who partnered with Tutu in the pioneering photo-project “Cancer Sucks!,”gives an account of his personal and professional journey with Tutu, and shares two photographs from the series.
If Tutu was surrounded by devoted friends, Natasha, a Russian Jewish immigrant to Israel, died in almost complete solitude. Only Nina Redl, a chaplain and nurse, was at her deathbed. Natasha, diagnosed with inflammatory breast cancer, was an inpatient in a small hospital and hospice in East Jerusalem when Nina met her. Natasha’s husband and three sons could not care for her at home. Even as Natasha struggled with the cancer, her grief about the family she left behind in Russia seemed only to exacerbate her anguish that she would never see her children grow up. Natasha entrusted her suffering to Nina. In “Maybe in another life,” Nina entrusts it to us.
“Overpass Girl” (O.G.) is a pseudonym created by Steve Davenport for a woman living with metastatic breast cancer in a collection of his poems published in 2012. Through a year-long email correspondence with O.G. and Davenport, BCC’s executive director Gayle Sulik tells how the poet came to write about his life-long friend and why she preferred to remain anonymous. O.G. is, as Sulik writes, “the nameless, faceless person who could be anyone, or a lot of someones.” In a time when survivor stories claim the spotlight, choosing not to reveal one’s identity may just be a revolutionary act.
An artist and a writer respectively, Sarah Sutro and Judith Cohen met before breast cancer entered their lives. Sarah was 47 when she was diagnosed and Judith, 63. In “Resisting breast cancer culture” the two friends discuss their experiences and treatment choices over the years, concluding that their decisions were connected to age and societal views of women and women’s bodies as well as their personal feelings about how to come to terms with a post-treatment body. Today, they spend more time discussing art than cancer, and they share some of their work in this special issue.
“The side effects of survivorship” written by Natasia Hamarat explores the social and personal impact of breast cancer treatment on younger women. She tells the story of Isabella, a Belgian woman she interviewed for her master’s thesis. Isabella, now age 41, received one of the most commonly prescribed hormone therapies used to lower risk of breast cancer recurrence, the drug Tamoxifen. Isabella experienced severe side effects from Tamoxifen, but when she explained these to her doctors she earned the label of rebellious patient. Isabella’s exasperation with the drug and her doctors inattentiveness motivated her not only to join a patients’ association and mutual support group but to become an organizer.
Slightly older than Isabella, Che, a Spanish hairdresser, struggled with cancer treatment in addition to the financial difficulties that stem from being a primary breadwinner. Che’s story written by BCC member Ana Porroche Escudero, reflects one of the many hidden socioeconomic and contextual aspects of breast cancer. As a self-employed and manual worker, Che did not have access to the system of social welfare that the Spanish government offers to other categories of workers. Che did not hide her anger towards what she rightly considered an enormous iniquity. She told Ana that she did not dread the cancer itself, but the treatments and how they would affect her body, her mind, and her ability to work again.
When Theresa Palomares of Houston, Texas was diagnosed with metastatic (stage IV) breast cancer, she was asked to leave a support group. Having a cancer that spread to distant organs scared group members who had been treated for breast cancer and no longer saw evidence of the disease. Feeling sequestered, she joined an online forum for metastatic patients and thought about how to bring attention to the forgotten breast cancer. Never having sewn in her life, she started a quilt project. Theresa collected stories of stage IV women and men and stitched them into a quilt that is now touring the United States.
Many women, with or without breast cancer, resist constraining norms and structural injustices. Belinda Rita Silvestro, from the Southern Italian town of Brindisi, felt tremendously discouraged when her mother died of breast cancer after months of silent suffering. Together with other women, she created an environmentalist association called “The Red Stroller” to build a better future for the community. Using the symbol of a red stroller with a smokestack, the group continuously and fearlessly denounces local industries and politicians for polluting the local community and putting themselves and their children at risk.
The essays in this issue aim to reconnect breast cancer with the real world, showing that it is not just possible, but necessary to resist dominant discourses. Combining writing and visual art, these stories speak a different language, a language of reality and freedom, a language that is, itself, a subversive act.
“Demystifying Breast Cancer” is formatted as a PDF for you to print easily and share. Click here to download.
Contact the special issue editors at demystifyingcancer@gmail.com.
