We know that illness can be narrated but can it be shown?
Feminist artists have been amongst the first to show the sick female body. Jo Spence used photography during the 1980s to document her breast cancer diagnosis and the impact of the treatments on her body. Spence’s projects, such as “The Picture of Health?” and “Narratives of Disease,” have had a pivotal role in conveying a straightforward image of what breast cancer looks like. In the 1990s, another feminist artist, Hannah Wilke, offered a feminist take on illness, documenting in her “Intra Venus” project the dramatic changes that a lymphoma brought to her body. In 1993, a picture of the American artist Matuschka entitled “Beauty out of Damage” was featured on the cover of the New York Times Magazine. In this image the artist wears a white dress showing her chest and her mastectomy scar. Yet, Matuschka’s picture is different from the Spence and the Wilke images, as the colors, lights and pose make “Beauty out of Damage” more like the traditional images of women portrayed by the press. However, the simple fact that the picture was published in a mainstream magazine made it both controversial and shocking.
Photography has not been the only medium through which feminist artists depict the sick female body; many artists have used documentary film to allow women to reveal their difficulties, the everyday oppression they were subject to and their efforts in building a movement of liberation (cf. Lesage 1978). In this article, I will analyse two documentaries directed by women and focused on two different experiences of illness. While these documentaries show different illness experiences, they are linked by the need to uncover what is usually silenced and hidden in the lives of people living with severe conditions, and by the ways they show how gendered expectations affect these experiences.
The Good Breast and Unrest: showing breast cancer and Myalgic Encephalomyelitis
The Good Breast (2016), directed by filmmaker and professor Bernadette Wegenstein, is a documentary inspired by cinema verité, a cinematographic technique used to show the realness of the subject explored. The film plunges the spectator into the everyday activities at a breast cancer centre in Baltimore and the camera follows two women surgeons, Drs Lauren Schnaper and Sheri Slezak, and their patients who have been diagnosed with different subtypes of breast cancer. We meet Doris, who, after a prophylactic mastectomy, decides to undergo several complex surgical interventions to obtain the breast she desires, even at the expense of her relationships and personal life. The film also focuses on Carol, who is treated for early stage breast cancer, and her family. Carol faces the effects of her own disease, and the painful memories that this diagnosis has brought back of her mother’s death, which occurred when she was only a teenager.
Through Debra’s story, the documentary explores the ambiguities raised by over-diagnosis and in situ cancer, a subtype of cancer which in many cases does not spread outside the breast and does not put the life of patients at risk. However,this type of cancer, once diagnosed, is usually treated with a mastectomy, and Debra is having difficulties in accepting the loss of her breast for a cancer that might never have developed. Toward the end, the film leaves Baltimore to follow Drs Schnaper and Slezak on a voyage in Catania, Sicily, during the celebrations in honour of Saint Agatha, the patron. Saint Agatha, imprisoned because of her faith in Christ, was tortured and her breast was cut off and for this reason she is considered the patron saint of women with breast cancer. At the same time, she protects the city of Catania from the eruption of the volcano, Etna. Despite the striking contrast between these two settings, the clinic in Baltimore and the town in Sicily, they are linked by the will to keep an imponderable risk under control, be it that of disease or of natural catastrophe. However, the documentary does not relegate women to the religious and supernatural realm; they inhabit both the religious and the scientific worlds, represented by Saint Agatha and the two women surgeons. The Good Breast is a choral documentary where not only the patients, but the surgeons, oncologists and nurses who treat and help the patients throughout their life with breast cancer, are women.
Unrest (2017), is the debut film of the filmmaker Jennifer Brea, who, while studying for a PhD at Harvard, found herself bedridden after a banal flu. Her health worsened and her everyday life became disrupted by increasingly severe symptoms that prohibited her from doing activities as simple as having a dinner or going for a walk. However, doctors claimed that it was “all in her head,” her body’s reaction to a remote and forgotten trauma. In the film, Brea continues her search for an answer, consulting with other doctors, and looking for information on her condition by herself. Through searching for information on the Internet, Brea enters into contact with dozens of other people with similar stories. Many people across the world have seen their lives halt suddenly due to unexplained illness and have received no answers or solutions from medicine. We learn that the disease afflicting Brea and the many others appearing in the documentary is Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). ME/CFS is an umbrella term that defines a number of neurological, immune, endocrine and metabolic conditions. The symptoms can present in both mild and highly severe forms and significantly limit the lives of those suffering from the condition, yet the causes and clinical manifestations of the pathology are still scarcely known. There are limited therapies, and those that exist have a limited impact. In the film, Brea documents how the condition has altered her life, and how she entered a medical world that offers uncertain support and solutions. She also describes the different therapies that give her temporary relief and shows how support and activist groups that help patients and researchers are built through the Internet. Unrest immerses us in Brea’s everyday life and that of other patients living in dark and silent rooms, in houses adapted to maximize their autonomy, disrupted by sudden crises. Unrest is an honest narration that raises awareness of an invisible emergency and steers our attention towards the fact that thousands of people suffering from an often-misunderstood disease are forced to withdraw to increasingly limited spaces.
The documentary as a blackboard
Among the texts recited in the documentary British Sounds (1969), realized by the Dziga Vertov group, founded by the French director Jean-Luc Godard, one contains the following declaration: “During the projection of a militant film, the screen is no more than a blackboard, the wall of a school offering concrete analysis of a concrete situation.” The Good Breast and Unrest both represent a blackboard that allows to analyse a concrete situation. Each film brings to the screen details of the illness experience that are usually concealed: a breast that has just been reconstructed and lacks nipples, an intubated patient that is having a silicone breast implant inserted, a young woman suffering from a severe ME-linked pain crisis. Mainstream media representations of breast cancer are characterized by reassuring tones and glamourized images, even though breast cancer is one of the most common causes of death for women. The Good Breast offers an image of the disease diametrically opposed to these glamourized, pink ones. Unrest shows what it means to live with a debilitating illness that is characterized not only by the difficulty of accessing treatments but also by the difficulty of having it recognized as a disease at all. The documentary presents the complexity of ME through medical sources, personal experiences and the account of patients’ and relatives’ mobilizations. Unrest guides the spectators through this complex journey and invites them to understand and act in support of medical research and treatment for people with ME. These films introduce the viewer to the everyday experience of the illness and bring them to what Susan Sontag (1978) has defined as ‘the kingdom of the sick’. These documentaries do not provide a convenient happy ending nor an easy solution to reassure us that everything will end well. Instead, they invite analysis and a call for action. In fact, these documentaries are the blackboard on which collective writing of better futures for patients can occur.
Lesage. Julia (1978) The political aesthetics of the feminist documentary film. Quarterly Review of Film & Video, 3(4): 507-523.
Sontag, Susan (1978) Illness as Metaphor. New York: Farrar, Straus & Giraux.
Cinzia Greco is a Wellcome Trust Fellow at the Centre for the History of Science, Technology and Medicine at the University of Manchester. She specializes in the study of cancer and has further research interests in medical innovation, inequalities in access to healthcare, and gender and health. She has obtained a PhD in Health and Social Sciences from the EHESS and between 2016 and 2018 she has been a Newton International Fellow of the British Academy. She is the recipient of the 2016 Barbara Rosenblum Dissertation Scholarship for the Study of Women and Cancer (firstname.lastname@example.org).