Women With Breast Cancer: Photo-elicitation Interviews Using Photographs of Women with the Same Disease

Lynn Blinn-pike, Betsy Fife, Art Myers

Since the 1970s there has been an increase in the number of fine art photographs of women with breast cancer. The objectives of this study were to examine: a) how women who have experienced breast cancer reacted and related to a book of nude photographs of other women with breast cancer, and b) their recommendations concerning the presentation of such photos to other women with breast cancer. This photo-elicitation study involved interviews with 15 women who had experienced breast cancer and the findings revealed that the majority of the women felt that the book of nude photographs gave them a sense of hope for the future. In addition, the findings showed some diversity of opinion about when, how and where to use the book of photos. They disagreed if it should be viewed as soon as women are diagnosed with breast cancer or later in their treatment. Finally, the recommendations included having the photos: a) presented to patients by physicians, b) available in physicians’ waiting rooms and chemotherapy rooms, c) available for women’s partners/husbands, and d) included as part of therapy. The results suggest that some women who have had breast cancer, perhaps with more of a postmodern versus modern orientation, benefit from viewing fine art photographs of other women with the same disease.  Viewing such photographs assists them in identifying with other women with breast cancer who appear elegant, beautiful, in satisfying relationships and accepting for their physical conditions.

Photo 3: Ulla

Since 1970 the landscape of the breast cancer movement has changed from one of medical sovereignty to one of new subjectivities, sensibilities, and solidarities, resulting in how the disease is medically and publicly managed, and socially constructed. This landscape changed, at least in part, because breast cancer research gained corporate and federal support in the U.S. and women with breast cancer gained greater attention through newly formed political and social organizations, many of which sponsored events such as runs and walks in locations across the country (Klawiter 1999; Kaiser 2008). 

While breast cancer was gaining national attention, an alternative view of women with breast cancer arose in the artistic community. There was an increase in the number of artistic photographs of women with breast cancer. Most of these were displayed in exhibits or printed in artistic books and contained multiple photographs of the author and/or other women as they experienced breast cancer, as well as their stories and reflections on their illnesses. Several well known photographers chose not to conceal the disfiguring effects of their own breast cancer. Matushka (1996), a model and photographer who underwent a bilateral mastectomy, stated this view when she said that if we keep hidden what cancer does to women’s bodies, and if we don’t accept women’s bodies in whatever damaged condition they are in, we are doing a disservice to woman. Artistic photographs of women with breast cancer are often revealing, including baldness, hospitalizations, treatment procedures, nudity, scars, lumpectomies, unilateral and bilateral mastectomies, and reconstructed breasts. In this study we examine how 15 women who have experienced breast cancer react to and relate to a book of such revealing photographs, in light of the cultural norms that dictate that they appear as they did prior to breast cancer by undergoing additional reconstructive surgeries and wearing adaptive clothing and prostheses. We also present their recommendations concerning having women with breast cancer view this or similar books.

Hall (1998) summarized two views concerning illness narratives: modern and postmodern. The modern view is based on the biomedical model in which the patient submits the self wholly to the physician and medical establishment. Frank (1995) labeled narratives of patients with modernist views as restitutive and described them as believing that they will get over their diseases or be cured and life will continue as it was pre-illness. Illness narratives in this realm include statements that reveal that a) the disease is transitory, b) more attention is on the remedy than on the self, c) medicine can triumph over illness, and d) the patient can return to normal.

For example, Kaiser (2008) described efforts such as the Susan G.  Komen Race for the Cure, which is a 5 km run/walk held in over 100 locations annually to raise funds and awareness of breast cancer as illustrating the modernist view. Mastec­tomy scars and disfigured bodies are hidden at this and other events. Prostheses makers, fashion magazines and cosmetic companies encourage women to project a particular definition of wholeness and femininity. They are taught to wear pink and cover up the reality of what their bodies look like after treatment by way of clothing, breast reconstruction and prostheses (Kaiser 2008).

In contrast to the modern view, Hall (1998) described the goals of the postmodern view as uncovering the meaning of the illness and its implications. Frank (1995) labeled patients who espouse the postmodern view of illness as on a quest. In quest narratives, the patient recognizes that his or her illness has resulted in life changes and seeks to embrace a new life or rebirth. A new “body-self” is the product (Frank 1995, 172). Illness narratives in this realm include statements that reveal that the patient a) learned valuable life lessons, b) became more involved in social change and advocacy, and c) gained valuable insights and wants to pass these on to others.

Dungan (2003, p. 8) described the end of the 20th century as a time when there was a “veritable explosion of artistic representations of the body and when the body became the common theme in the work of artists, critics, curators and art theorists.” Several art historians and curators described the 1980s and 1990s as a time when exposure of the body was used to make a statement about the politics of gender and identity (Dungan 2003; Posner 1998; Sussman 1993).   Shildrick and Price (1998) stated that after decades of being kept hidden, the body came to the forefront of discourse in the social sciences and humanities, as well as in medicine. This paradigm shift corresponded with the rapid growth of the feminist movement.

Photography became one of the postmodern approaches used by many researchers and artists in attempting to understand women’s experiences with breast cancer. For example, well-known photographer Hannah Wilke conducted a project between 1978 and 1994 that chronicled her mother’s experience with cancer and her own experience with lymphoma. She photographed her mother’s emaciation, hair loss and black and blue marks. She photographed her own body bloated from chemotherapy and marked by radiation scars. She shot hundreds of photographs of each of them and described the process as therapeutic. She believed that photography is a vehicle that promotes healing because the individual being captured on film becomes immortal, important, the center of attention, and a star (Buszek 2006).

The following seven refereed articles all discussed a similar postmodern approach to the representation of women with breast cancer. All seven articles discussed photographs of and by Spence and Matushka, two well-known photographers who photographed their bodies after having breast cancer surgery. Their photographs and biographies have been published in major magazines and books, as well as shown in galleries and on web sites.

British feminist Jo Spence took self-photographs to document her experiences with breast cancer from the time of her diagnosis in 1982 until the time of her death in 1992. Although her surgeon suggested a mastectomy, Spence chose a lumpectomy and Chinese herbal medicine. She took hundreds of photographs to document her diagnosis, surgery and alternative treatment methods. She stated that she used the camera to visually come to terms with her disease. She was particularly interested in the political and therapeutic power of autobiography through photography (Spence 1995). She had a reoccurrence 18 months after a lumpectomy and eventually died of leukemia (Radley and Bell, 2007)

Bell (2002, 2006) and Radley and Bell (2007) described Spence’s photographs as narratives of living with cancer that incorporate visual and textual elements. They also suggested that words do not fully capture the meaning of illness and that extending the study of illness narratives beyond oral and textual accounts can enlarge and enrich social science understandings of people’s experiences of illness. How patients construct meaning in the production and display their art builds an argument for the benefits of developing a visual imagination around illness.

Amaya (2004) and Rosolowski (2001) discussed the role that photography played in the process of self-formation for Matushka after undergoing a mastectomy in 1991. Matuschka, a fashion model and artist, photographed her nude body, highlighting the mastectomy scar on her chest and her lack of breast reconstruction. On  August 15, 1993, Matuschka’s self-portrait called Beauty Out of Damage appeared on the cover of the New York Times Magazine as the signature image for Susan Ferraro’s article, “You Can’t Look Away Anymore: The Anguished Politics of Breast Cancer.”  According to Roslowski (2001), the New York Times received 125 calls on that Sunday alone and 200 letters in the days following, an unprecedented response.  In 1996, Matushka published a biographical essay in which she described how her art had been impacted by her mastectomy.  Matuschka came to be known as “breast cancer’s pin-up girl,” a symbol for other women with breast cancer. Readers have clearly been moved by Matuschka’s image, both positively and negatively. Beauty Out of Damage is one of the most recognizable images of breast cancer today, and still evokes heated discussion. Cartwright (1998) argued that the self-portrait photography of Matuschka and other women with breast cancer help us to think about the ways in which issues such as race, age and beauty are key aspects in the experience of breast cancer and not tangential cultural issues or appearance-related side effects.

Another approach involves asking women to produce visual narratives by taking, discussing and writing about photographs that represent their illness experiences. In four studies, patients were asked to take photographs of their experiences a) during chemotherapy (Frith and Harcourt 2007); b) related to caring behaviors and demands during their breast cancer experience (Gates, Lackey and Brown 2001); c) related to their quality of life as breast cancer survivors (Lopez, Eng, Randall-Davis and Robinson 2005); and d) during certain aspects of living the breast cancer experience (Predeger 1996). The authors of the four studies cited above all concluded that patient-produced photographs and text served as pow­erful stimuli for discussion beyond the medical aspects of their diseases. Frith and Harcourt (2007) concluded that this method: a) produced elaborate accounts of illness experiences through representing experiences and discussing the photographs themselves; b) allowed women an opportu­nity to capture illness experiences over time, c) allowed women a way of capturing the past, which can then be re-explored from the present; d) enabled patients to retain control over their images and how they choose to represent and describe their experiences; and e) provided a window into the private, everyday experiences of patients away from a health care setting. 

Nelson (1996) attempted to gain insight about women who were struggling with the uncertainty of breast cancer re-occurrence through photographic hermeneutics which is based on the belief that symbols are experiences that can be contemplated, not merely lived. The research participant can capture symbols or experiences on film that are representative of personal experiences. The photographic symbol is then used by the research participant to interpret the meaning or experience. Photographic hermeneutics were used to describe and interpret uncertainty for nine women between two and six years post-treatment for breast cancer. Data were collected using interviews and written interpretations of photographs. For instance, one woman in this study interpreted her uncertainty of cancer recurrence through a photograph of dandelions in her yard and stated:  “No matter how well you take care of your yard, the weeds and disease just come in. I am always out pulling, pulling….It’s real symbolic to keep the weeds out of my garden. After a few days of rain, they just encroach right in, just like my cancer (p. 4).” This symbolic metaphor provided the researcher with a unique perspective on the uncertainty experience for women living with breast cancer.

Walker (1991) used one abstract photograph as an integral part of the therapeutic process. The approach is primarily nondirective and appropriate to insight-oriented individuals and may be applied more generally to terminally ill patients. The photograph serves as a trigger or tool for the patient to let his/her imagination go. The stream of thought brought forth by the photograph provides ongoing feedback and contributes to the patients’ creations of new mental images, which translate into increased self-awareness. In this case study, the goal was to use one photograph to help a terminally ill breast cancer patient confront the significant issues of her life, including her own mortality. Walker stated that it is this recognition of the final growth experience that gives new meaning to life itself. The 13″ x 19″ color photograph (light colors and hues of dark purples and brown interwoven and swirling) that was used was part of a set of ambiguous, abstract images, evocative of primal themes (death, sexuality and power). Their dreamlike quality was described as a powerful force in their effectiveness. In describing reactions to the photo, the patient became aware that she was describing aspects of herself. The image also encouraged free association and helped the patient realize salient underlying themes in her life. This case history provided a model for the use of photographs in the therapeutic process to deal with issues of mortality with terminally ill breast cancer patients.

Read the full article at: https://journals.sfu.ca/vm/index.php/vm/article/view/10

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