Professor Emilia Nielsen, from the Faculty of Liberal Arts & Professional Studies, has published a book about breast cancer that tackles the issue in a very different way. Disrupting Breast Cancer Narratives: Stories of Rage and Repair (University of Toronto Press, 2019) explores what she calls the “politically insistent narratives of illness” and refutes the optimism of pink ribbon culture. Instead, she digs deep and investigates the anger around breast cancer; discusses the ways emotion, gender and sexuality become complicated, relational and questioning; and unpacks the culture of disease in a unique way.
Emilia Nielsen and her book. Image reproduced with permission of U of T Press
Nielsen talks with Brainstorm about this new publication, which was supported by the Social Sciences and Humanities Research Council of Canada.
Q: Tell us about the genesis of your new book.
A: This is a revision of my doctoral research, which I defended in 2013. The idea started with my being disturbed about the way that all cancer stories seemed to be so similar. I was curious about the lack of discernible anger attached to breast cancer.
I didn’t want to critique the stories themselves – coming from real women with breast cancer. Instead, I wanted to better understand the conditions through which breast cancer stories emerge. I wondered why we see so many public sharings of happy, positive, hopeful breast cancer stories.
Q: Please expand on the similarities. How did you unearth them?
A: I discovered Judy Segal’s work, published roughly 10 years ago. She critiqued what she called the standard story: “I found a lump – I was scared – I stayed strong – I battled through the treatment – Now I’ve emerged and I’m better than before.”
My antennas went up and I thought: I bet it’s way more complicated than that. This necessitated that I go into illness narrative scholarship, to go beyond the commonly circulated personal stories to examine the cultural politics of breast cancer. Here, you start to see the influence of the corporatization of breast cancer, the marketing of pink ribbon products, the support groups that have a ‘good-vibe-only’ approach, etc.
The mainstream breast cancer narrative of triumph: “I found a lump – I was scared – I stayed strong – I battled through the treatment – Now I’ve emerged and I’m better than before.”
Q: You moved toward a more disruptive narrative?
Audre Lorde’s book, The Cancer Journals (1980). Source: Wikipedia
A: Yes, I sought to look at all those disruptive voices, those stories that are a bit different. Audre Lorde’s book The Cancer Journals (1980) was influential to me here. It was a prophetic text because it urged women to claim all the emotions. I was interested in the angry, sad, despairing stories; the stories that include the examination of the possible environmental causes of cancer; the stories that ask questions.
Hope is a powerful emotion. But it’s made more powerful when combined with anger because anger contains within it the desire to change the structural forces that allow cancer to emerge or for treatments to be difficult. Being angry can allow things to happen.
After I apprehended this, I went about finding these stories from the 1980s to the present day. Allowing space and visibility for disruptive breast cancer narratives has grown, especially in the last five years. I’ve seen a shift, which has been wonderful to witness.
Q: Why is it so important to refute the “tyranny of cheerfulness?”
A: Cheerfulness, which is highly gender socialized [girls = nice], can come with a cost to claiming full emotional experience of the real gravitas of a breast cancer diagnosis. The tyranny of cheerfulness, coined by Samantha King, is really saying: hold your tongue; don’t say that; don’t ask a question. But we’re losing out what it truly means to be diagnosed and treated for cancer. We’re losing valuable information on the patient experience.
What I’ve gleaned from conversations with doctors is that yes, the crying, angry patient is harder to address than the non-crying, non-angry patient. But doctors also want to know the truth of their patient’s experience.
Q: The book’s third chapter contains ‘angry stories.’ Could you tell us a few that stuck out in your mind?
A: Barbara Ehrenreich’s 2001 essay “Welcome to Cancerland” breaks down the problem with the commodity culture that has emerged around breast cancer, but she doesn’t shield us from her own anger – not at doctors, nurses or cancer survivors, but at the culture we’ve allowed to grow that seems inseparable from the marketplace.
She lets us into her world as she navigates from the first moment when she sits in her doctor’s office, preparing for a mammogram, to biopsy then treatment. It’s a stronger story, a more effective and truthful story, because the anger, which mobilizes her, is so present. It’s not an obstacle to clear thinking; it’s a vehicle.
The tyranny of cheerfulness means we’re losing valuable information on the patient experience. Doctors want to know the truth about these experiences
Q: Your approach is interdisciplinary. Can you tell us about this?
A: I joined York in 2018 in the Health & Society program. I was hired with a specialty in arts, medicine and healing. My approach brings various disciplines together. My goal is to move beyond disciplinary knowledge. I prefer to take a problem and then assemble around that problem methodologies that are most appropriate.
Q: How have you found York University, given its strength in interdisciplinary work?
A: York has an appetite for this kind of work; it’s almost expected that if you’re at York, you’ll be doing something interdisciplinary. When I accepted this job, people said, “Yes, York University, of course that makes a lot of sense.”
At York, I can write a critical-creative paper and also have poetry as a research outcome. At other institutions, something like poetry would be considered as icing on the cake; but at York, research-creation is the cake itself.
To learn more about Nielsen, visit her Faculty profile page. To find the book, visit the publisher’s website.
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By Megan Mueller, senior manager, Research Communications, Office of the Vice-President Research & Innovation, York University, muellerm@yorku.ca