Who gets to be a survivor?
On the problems and questions that come with the term 'cancer survivor'
While half of us will be diagnosed with cancer in our lifetime, advances in detection and treatment are leading to an increasing number of people living beyond cancer with no evidence of disease, often lumped together in the category of ‘cancer survivor’. With my research, I seek to unpick the terms ‘survivor’ and ‘survivorship’, exploring how people feel about those terms, how they sit within cancer culture more broadly, some of the more problematic aspects of survivorship as a concept, and the lack of a survivorship pathway of care.
So I thought I’d write a preliminary piece summarising some of the initial reading and thinking I’ve done on survivorship and how it will play into my upcoming research workshops. As an aside, I am writing this from Suffolk, on the penultimate day of a writing retreat organised by the Culture, Medicine and Power research group at King’s. It’s been a fantastic few days of walking, talking, thinking and writing, in a little seaside village on the East coast of England. Ten people from the department, from PhD students to Professors, have shared two large cottages, cooked for each other, played table tennis and discussed our research. It has been so useful for me, I find that talking about my research, hearing about the research of others, and receiving provocative questions are all really important in the ‘percolation’ stage of writing. I’ve finessed a presentation I’ll be giving in the department in a couple of weeks, and I’m writing this piece as well as a chapter for my supervisors. Plus it’s great to get to know my colleagues better, especially the ones who are amazing cooks! The photo above was taken on Walberswick beach, as we walked in pairs in 15-minute intervals, chatting around various themes including placemaking, storytelling, challenges and theorising in our research. A truly nourishing few days, in every sense of the term. I shall be sad to leave.
Anyway, back to the point. In this article I will begin by discussing some of the definitions of survivorship, followed by a look at the increasing visibility of the ‘cancer survivor’ in mainstream culture. I’ll then talk about some of the more problematic ‘norms’ of survivorship, including critique of ‘pink ribbon culture’ and aspects of ‘compulsory positivity’. I’ll briefly touch on how this feeds into cancer narratives before finishing with the place of ‘survivorship’ within my research and how I will explore this further.
Defining survivorship
The term survivor originated as a legal term, referring to the descendant of someone who would inherit their goods/title/land etc. Around the 19th century it broadened out to include those who lived following natural disasters, and by the 1960s there was a wider understanding of the term to include those who had experienced trauma of various kinds, and lived to tell the tale. For example, in her genealogy of the term survivor in public discourse, Shani Orgad discusses the holocaust, sexual violence, discourses of health and illness, and the use of the term survivor within psychotherapy. A landmark piece within the cancer realm was Fitzhugh Mullan’s brief commentary in the New England Journal of Medicine in 1985. Mullan, a doctor who was diagnosed with cancer aged 32, contradicted the prevailing binary of ‘kill or cure’ that was applied to cancer at the time, and instead put forward the idea of ‘survivorship’ as a more useful characterisation of the experience. His suggested three ‘seasons of survival’ begin at the moment of diagnosis, and take into account the psychological challenges which accompany cancer and its treatments as well as the biomedical impacts of the disease. More recently, the use of the term survivor has evolved again, partly due to the significant increase in those living with and beyond cancer, due to the improved efficacy of treatment. There are some researchers who believe we should be talking about cancer more as a ‘chronic disease’ than a ‘terminal condition’. This view of ‘cancer-as-chronicity’ takes into account the everyday management of cancer’s legacy, as the experience of treatment, symptoms, impairments and ongoing side effects linger long after the disease has left the body.
From cancer victim to cancer survivor
As well as these shifts in understandings of the definition of survivor, there has also been a shift in perceptions of representations of survivorship. Some of the earliest feminist accounts of cancer, such as Audre Lorde’s The Cancer Journals, written in the 70s, critique the invisibilisation of cancer. Lorde spoke out against the shame and silencing associated with the disease, for example the way she was admonished in the clinic for not wearing a prosthesis after her mastectomy, because it was ‘ruining the morale’ of other patients around her. She wished to see other mastectomised women in public, rather than have everyone feel they needed to hide their experiences with cancer for the comfort of others. She believed that to refuse to wear prostheses gave her a form of power. There was therefore a feminist drive away from the status of a passive, helpless ‘victim’, raising awareness of actual lived experience in order to create the political category of ‘survivor’. Being a ‘victim’ is associated with a lack of agency, a dependence on community, and a silencing of experience, whereas being a ‘survivor’ is to be heroic, strong, and to publicly declare that one has overcome cancer. However, some feel the pendulum has swung too far in the other direction, that cancer has gone from being invisible to too visible – from the ‘closet to commonplace’. Pink ribbons are everywhere in October, for example, for breast cancer awareness month, and corporations have been accused of co-opting the symbol of breast cancer to increase their profits. With this growing visibility, there has also been a shift in perceptions of survivorship – the move from ‘victim’ to ‘survivor’ is positioned as mandatory, or at the very least desirable, and these two identities are positioned as mutually exclusive. But the reality is more complicated than that.
Norms of survivorship
The implication of this is that there is one ideal way to be a survivor. That there are ‘bad’ and ‘good’ cancer patients, and that ‘good’ cancer patients have a moral imperative to triumph, to be heroic, and to experience personal growth from the experience. You’ll notice that the language used around cancer is often that of warfare – someone is described as ‘fighting’ cancer, or ‘beating’ it, or ‘losing their battle’. Many people living beyond cancer find this terminology extremely problematic, not least because it implies that if someone dies, they simply didn’t fight hard enough. Am I ‘braver’ than someone who has died, simply because I am still alive? Sadly, the media and public discourse reinforces and reproduces these representations of survivorship, leading those newly diagnosed to often fall into line and embody these kinds of identities.
Another critique is the moral obligation to view cancer as an opportunity, to enact a particular version of survivorship, to perform what we might call ‘compulsory positivity’. This is often reinforced through cancer narratives, which speak of the benefits of cancer, that the writer’s diagnosis made them a better person, that they experienced ‘post-traumatic growth’ from their experience. If you’ve survived cancer, you are required to perform appropriate positivity, for people to find you ‘inspirational’ and for you to hide the more problematic rollercoaster elements to your experience, for fear of boring or scaring your audience. As you can see, perhaps the increased visibility of cancer is not necessarily as authentic to the experience as it may initially appear.
Critiques of the label ‘survivor’
There are many critiques of the label ‘survivor’ – that it does not take into account differences such as the type of cancer (cancer is not actually a single disease, but many different diseases lumped under a single label). Or differences in age at diagnosis, gender, sexuality, race or ethnicity. A common critique, linked with the aforementioned ‘battle’ language, is that it individualises cancer, placing the responsibility for care and cure on the individual who is diagnosed, rather than considering the wider collective responsibility of their community, the state, or society at large. It puts all people living beyond cancer in the same bucket, implying that their experience is generic. And it places an emphasis on life, rather than quality of life. Someone becomes a survivor when they no longer have any evidence of disease, regardless of how rich or meaningful their life is. The compulsory positivity of survivorship delegitimises any feelings of anger, or a demand for social responsibility.
Survivorship narratives
Many of these assumptions about survivorship are internalised by those with cancer, and therefore make their way into narratives written about the experience. The typical narratives written about cancer are what Arthur Frank calls ‘restitution narratives’ – the arc of the hero from diagnosis, through trauma, to emerge out the other end, triumphant, healed and changed for the better by the experience. I myself have been guilty of reinforcing these narratives when I’ve shared my own experiences with the disease. I almost felt an obligation to my readers to perform this role of cancer survivor as it is written, or as Emily Waples calls it, ‘culturally emplotted’. In these survival narratives, the protagonists are defined by their identity as a survivor. They are pushed towards generic ideals of survivorship. But not only do these narratives tell of their reclamation of health, they also tell of their reclamation of a heteronormative femininity.
What this means for my research
All of this raises some really interesting questions for my research. How do my research participants feel about the terms ‘survivor’ and ‘survivorship’? Where is there a space for pleasure beyond the cliched smiley happy cancer survivor? What of those who live a long life with a secondary diagnosis — are they survivors too? Where might there be opportunities to think more broadly about a survivorship pathway of care? If cancer is currently treated as a disease of the individual, and survivorship focuses on individual trajectories of triumph, how might we consider collective care and the opportunity to effect social change? And what are the implications of all of this on people’s sense of self post-cancer? What kinds of identities do they feel are available to them? What if they do or don’t want to conform to some of the norms I’ve mentioned above? By gathering stories from people’s lived experience, by coming to a shared understanding of pleasure, embodiment and the role of creativity in meaning-making after cancer, I believe I can start to answer these questions.
References
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