Coming to knowledge about Metastatic Breast Cancer: a drama. (Discussion Papers/Documents De Travail).
La piece de theatre Handle with Care? Women Living with Metastatic Breast Cancer a creee par des chercheuses, des femmes qui ont le cancer du sein, des actrices et des professionnelles du theatre. La creation de la piece engageait egalement la creation du savoir. En puisant dans des ecrits de theoristes feministes, cet article sonde differentes facons dont les personnes impliquees dans la creation de Handle with Care? ont acqui, remis en question, et valide le savoir touchant aux realites et aux possibilites qui existent pour celles vivant avec le cancer du sein au stade avance.
Over the past few decades, significant critical attention has been directed at conventional theories of knowledge. Dominant epistemologies have been scrutinized with particular skepticism by feminist scholars and activists. Examining entrenched beliefs about how the world is reliably known, many feminists find these beliefs partial: find them incomplete, and find them biased.
In the academy, and more broadly, certain epistemic practices have been taken as the only genuinely trustworthy practices: observing, thinking abstractly, reasoning, reading (certain things), (certain kinds of) writing. These practices are sanctioned through their shared norms of justification, norms that are in no way value free. This article is a case study of epistemic practice, an examination of the diverse means by which a group of people acquired and validated a particular knowledge. It describes the process by which a drama, Handle with Care? Women Living with Metastatic Breast Cancer was created, considers the epistemic struggles the script development team encountered, and outlines the practices that brought us to shared knowledge about what it can mean to live with metastatic breast cancer.
Using dramatic techniques to create knowledge is not new, of course, as the burgeoning literature on performance ethnography attests (see, for instance, Turner and Turner 1982; Conquergood, 1991; Pelias, 1999). What may be rarer about this particular dramatic foray into knowledge creation are the ways in which our knowledge--and our practices of generating knowledge--were negotiated, and the nature of the group amongst which the negotiation took place.
Creating Handle with Care?
In January 1998 we met for the first time: members of a research team based at Toronto Sunnybrook Regional Cancer Centre, participants in Act II Studio (a seniors' theatre studies program at Ryerson University), two women with metastatic breast cancer (Jan and Mary Sue) and women active in the breast cancer community. Seated on mismatched chairs in a room at Ryerson, we introduced ourselves and began to talk. Our goal was to create a drama, working from research conducted the previous year about the information needs of women with metastatic breast cancer. For several months we met, exchanged copies of the focus group transcripts, and learned about body sculpture. With the guidance and prompting of Act II Studio's artistic director, Vrenia Ivonoffski, we engaged in an extended process of improvisation, creating a series of "vignettes" (three- or four-person body sculptures and short scenes) from themes identified in the research.
Over the summer, Vrenia gathered together the images and scraps of dialogue we had generated in the vignettes and selected from the transcripts, and wrote a script. Multitudinous rehearsals ensued, involving a cast of women with breast cancer, actors and researchers. In October 1998 we launched Handle with Care? Women Living with Metastatic Breast Cancer, and have since performed at oncology grand rounds at Regional Cancer Centres across Canada, and to public audiences in almost every major city in the country. Audience reaction to the drama has been overwhelmingly positive; performances were extended 15 months beyond our original schedule. Elsewhere we have described factors related to the success of Handle with Care? and the insights we gleaned about transforming qualitative research into dramatic production (Gray and Sinding, 2000; Gray et al., 2000). (1)
Our Epistemic Struggles
From the first few meetings of the Handle with Care? crew it was clear that "metastatic" was a new word for members of the theatre group. Many of their questions drew upon and reflected dominant breast cancer discourses, discourses focussed on a primary diagnosis and threaded with injunctions to "think positive" (for feminist critiques of these discourses, see Wilkinson and Kitzinger, 1993; Batt, 1994). The gravity of a diagnosis of metastatic disease--of a primary cancer advancing (incurably) to another part of the body--went largely unacknowledged. In a flurry of conversations and phone calls between meetings various interventions were proposed. A member of the research team was appointed to give a short lecture about cancer. Out came diagrams of cell structure and charts about life expectancy. People listened, but not much changed.
Everyone involved in the project read at least some of the focus group transcripts; many people read all of them, diligently underlining provocative quotes, clearly moved by the content. The final script of Handle with Care? is comprised in no small part of dialogue recorded during the focus group meetings. At the same time, surrounded by mountains of transcripts, the artistic director said, "I still had the feeling we were on the outside of the project--all of us were outside, every single one of us. We hadn't really clicked in."
Several members of the group also read the paper, "Information Needs of Women with Metastatic Breast Cancer" (Gray et al., 1998) written by the research team from the focus group data. The qualitative analysis offered in the research paper provided us with a list of themes that acted as a touchstone throughout the project, organizing and focussing our work. Yet the paper itself never became a significant resource to the group; our conversation about living with (metastatic) breast cancer was relatively unmodified by its reading.
The impasse we experienced was due in part to the fact that the prognosis associated with a diagnosis of metastatic breast cancer was not made explicit in the lecture, the transcripts, or the article. Ross Gray, the research team leader, eventually did this, at what came to be called "the statistics meeting." That meeting marked a turning point in the project. The conversation shifted; fewer of our interactions were premised on assumptions related to a primary diagnosis of breast cancer. The medical facts--50 percent of people diagnosed with metastatic disease die within two years, 85 to 90 percent die within five years--became part of our collective understanding of the illness. To say, of course, that the biomedical knowledge was "acquired" or "created" at this meeting utterly belies its impact on the group. More accurately, it descended on, invaded, crashed into us. Towards the end of that meeting, one of the women from Act II suggested that we include the medieval figure of death, with cloak and scythe, i n every scene of the drama. Our collective knowledge now had a resonant representation. If we began from the cultural slogan, "cancer can be beaten," we were now firmly grounded in the social equation of cancer and death.
Yet the validity of the knowledge we took up at that meeting was disputed by one of the women living with metastatic disease:
After Ross read the statistics about how long people with metastatic disease usually live there was a sort of hush over the group for just a second and I looked around and I thought, "Okay, we've said it now, now let's pass it, because it can't be what governs us. They have to understand that and know how serious it is, but it can't stop what we're doing." (Jan)
Here, Jan refuses to grant authority to the biomedical knowledge about metastatic breast cancer. The statistics may be true, may be necessary, but they were not, in her view, enduringly useful. What the group had come to know about metastatic disease at the statistics meeting was important, according to Jan, but incomplete: it would not serve our work together, and must be transcended.
Each person involved in developing the Handle with Care? script took part in creating vignettes based on themes from the research. Vrenia often asked that each small working group include a researcher, one of the women who had experienced a breast cancer diagnosis, and actors. Not infrequently, Vrenia turned to members of the research team to confirm that a particular vignette was consistent with the transcripts. We also, as a group, relied on the clinical knowledge and wisdom of research team members. But it was Mary Sue and Jan, as women living with metastatic disease, who most commonly had the final word on whether or not a particular scene had potential, carried the right tone, "worked."
Within a mainstream epistemic community and evaluative structure the research team's knowledge about metastatic breast cancer would have been granted final authority in the Handle with Care? project. Yet while our knowledge was often validated, legitimacy was more often located in the transcripts and in what Mary Sue and Jan said about the illness and the meaning of living with it. As Jan said, "I don't think I've ever had a role where I have had so much respect given to me when I came though the door....I've never been so listened to." The daily patterns of the group's interaction reflected some feminist assertions that expertise emerges as much (if not more) from a particular set of experiences, or social location, as it does from other kinds of knowledge-making resources (Harding, 1987; Collins, 1990).
In some feminist theory and practice, spectator theories of knowledge (2) are unseated by commitments to dialogue. The call-and-response discourse mode that Patricia Hill Collins describes occurring in African-American communities discourages--even disparages--"spectators": "For ideas to be tested and validated, everyone in the group must participate. To refuse to join in, especially if one really disagrees with what has been said, is seen as 'cheating"' (Collins, 1990, p. 213). This conceptualization of the obligations members of a community have to the process of knowledge creation can shed light on the conflicts Handle with Care? evoked. When we first entered the project the research team approached group discussions in a manner we deemed respectful. Attuned to our privilege, we took care not to overpower others. We hung back. When conflict erupted we neither defended nor asserted our positions. It was not until much later, in interviews with the participants, that we understood how our "respectful" postur e was received. Members of the research team were seen by some as aloof and silently judgmental. More than one Act II participant thought us insufficiently bought into the artistic endeavour, unwilling to take the leap of faith the project required. Another deemed us insufficiently emotionally engaged. Cheating, indeed. In a paper he wrote about his experience with Handle with Care? Ross Gray noted that becoming an actor in the drama solved a problem about which he had not been entirely aware:
The acting group was looking for something more than a research consultant. They wanted more engagement...Acting propelled me to that new level of engagement. And it allowed me to see the practiced role of dispassionate researcher as a danger to the creative process. (Gray, 2000, p. 382)
A danger to the creative process and, we might contend, a violation of the group's emerging epistemic standards.
Becoming actors in the drama propelled several members of the research team to new--and unfamiliar--levels of engagement. Initially seated in positions of (relatively) disembodied observation, we now became physically engaged, embodied in the drama. We took the stage, becoming subject to the gaze (and judgment!) of fellow actors and the artistic director.
The improvisation technique employed by the artistic director to develop the script also required us to use our bodies. Vrenia would assign a word or phrase related to themes from the research, with which we were to "do something." Initially we sat in our chairs and pondered; Vrenia insisted we stand, convinced we would generate something so much more effective on our feet, with our bodies. Improvising around a theme surfaced and demonstrated what we knew about living with metastatic breast cancer. Our embodied engagement with words and ideas from the transcripts also produced knowledge (Hawkesworth, 1987; Frank, 1990; Grosz, 1993). Each vignette we created drew upon our individual knowledge about serious illness. In discussing, revising and enacting the vignettes, what we each knew was transformed--collectivized, and embodied. Improvisations elicited the kind of "click" moments some feminists attribute to the use of specific consciousness-raising techniques like role playing and simulations (Fonow and Cook, 1991). In the end, as well, it was an embodied experience that confirmed to Jan that we had acquired the knowledge about metastatic disease that for her counted as knowledge:
When we all belly-laughed for the first time, and I don't even know what caused it, but the real sense of hilarity--and everybody was laughing and I thought, "They've got it, they've got it!" You can have this fucking disease. And you can still laugh. (Jan)
Our embodied engagement with key themes from the focus group data generated knowledge in the group about metastatic breast cancer that the cancer lecture, the research paper and the transcripts could not. Importantly, however, the clinical! scientific knowledge created by the research team took on a new significance after we had been through the process of improvisation and group interaction. One woman said she had gone back to read the paper and found it meaningful in a completely new way. As Ross said, "there was freedom in the improvisation and the articulation...people trying to articulate for themselves--like doing an improvisation on information needs. And then there is almost more of a place to connect to the research material from."
Several meetings into the project, Jan told the group that she had developed a dramatic scene based on her own experience of receiving a diagnosis of metastatic disease and said she wanted us to act it out. A member of the research team noted that women in the focus groups had not spoken about the moment they were diagnosed and discouraged our spending time on it. Over time, Jan persisted. As she said,
I wasn't even sure if it needed to be in the show, as much as I thought the cast needed to go through it, to hear what it was like, to feel what it was like. We were still having trouble at that point with getting the cast to really understand and that's what made me think, they've got to go through it, they've got to cry. (Jan)
Here Jan marks a particular epistemic pathway, recognizing that, "emotions serve as a source of insight" (Fonow and Cook, 1991, p. 9), and, further, that emotions are indispensable to reliable knowledge (Jagger, 1989; Stanley and Wise, 1993). These assertions join a chorus in feminist and sociological theory that insists emotions be taken seriously (Narayan, 1988; Ellis, 1991; Scheman, 1995). As much as we might have begun to "know" what it must be like to receive a diagnosis of metastatic disease, Jan decided that the group did not "really understand." In her assessment of what needed to happen for more genuine knowledge to be created, Jan concurs with many feminist theorists about the centrality of emotions to the knowledge validation process. Collins writes specifically about the value of empathy as an aspect of emotional engagement that can function as a catalyst (Collins, 1990). The understanding that life struggles other than cancer could serve as resources to our work together was increasingly validate d as the Handle with Care? project progressed. As one participant said,
People began to get the idea that there are related experiences in life that put you into that space where you don't know what is going to happen next and where you are terrified, you don't know what your next move should be...things that have happened to you that would make you understand that kind of a space. (Linda)
In outlining the value of empathy Collins describes the connection that occurs in Shirley Anne Williams' Dessa Rose when a Black slave woman sees that a white woman is also vulnerable to male sexual violence. "As a result of her new-found empathy, Dessa observed, 'it was like we had a secret between us"' (Williams, 1986, cited in Collins, 1990, p. 216). Discovering "secrets" amongst us, linking our own experiences of fear, loss and uncertainty to Mary Sue and Jan's, became important in our developing knowledge about what it can mean to live with metastatic breast cancer.
A central tenet of the Afrocentric feminist epistemology Collins develops holds that "truth emerges through care" (Collins, 1990, p. 217). In an interview midway through the project, one woman spoke about the care that was blossoming between members of the crew and Mary Sue and Jan:
Beyond the usual liking for people it's almost like falling in love with them in a way, and how vulnerable that makes everyone and the edge it has given things. To have done it without them at this point is unimaginable. It would have been more of an intellectual exercise. I don't think that the theatre people would have had nearly the opportunity to open their hearts. They might have opened their minds and they might have cared deeply about it, but I think Mary Sue and Jan's presence there, did an end run. (Ann)
In Ann's assessment, our "falling in love" with Mary Sue and Jan did not simply enhance other kinds of epistemic processes. Rather, our connection with them "did an end run," evading both an intellectual apprehension of what it means to live with metastatic breast cancer and a (merely) caring engagement with the project. Later Ann underlined the significance of vulnerability in this process: "They take this role for all of us, the two identified people with metastatic disease who sort of carry our possibilities....It's like an agency for everybody. That vulnerability is an agency, or acts as an agency." Our individual and collective experiences of vulnerability -- vulnerability to an initial diagnosis, to recurrence, to death, to suffering, to loss -- acted as an agency, affirming our connections to one another, and creating yet another pathway to knowledge about living with a diagnosis of metastatic disease.
Creating Handle with Care? required that people usually engaged in quite different pursuits--theatre and research--work together, alongside women with advanced breast cancer. At the outset of the project, separateness characterized our meetings. Early interviews describe two "cultures," a research culture and a theatre culture. Distinctions between women who had experienced a breast cancer diagnosis and those who had not were emphasized. Aspects of these divisions had epistemological foundations: competing claims are often made about what people with (or without) a particular experience can reliably know about that experience, and research and theatre sectors have different, often divergent, standards about how knowledge is acquired and validated. Yet over the course of creating Handle with Care?, as Ross noted, "These groups found their way to some common ground, everybody moving into the space occupied by the ill women, and taking that up, being willing to take that up. And so there is in some ways a kind o f sadness underlying everything but there is also just a real sense in which people are really on board with the experience of women with metastatic disease."
As we created the drama, traditionally dominant epistemic practices eventually gave way--were overwhelmed by, and also made room for--alternative ways of acquiring and justifying knowledge. The "giving way" did not happen without struggle. Mere weeks before we were to break for the summer we did not appear particularly close to having a product, a drama whose meanings about living with metastatic breast cancer we had agreed upon. It was around this time that a member of the research team said, with laughter but not without urgency, "I would like to see an abstract and an outline." Around the same time, Vrenia, the artistic director, said, "Don't tell anybody this, but the panic and fear of not feeling like there's a product looming is really important....You have to stay scared because that means you keep searching. It's when you've got your back pushed against the wall, that you finally cut to the core of the matter."
The richness of creating Handle with Care?, as well as the success of the drama itself, may well be due to its accommodation of apparently divergent knowledge-making practices and the sectors which profess them. Or, as the artistic director put it, "the story underneath the story is the journey of us to come together as a real group with nobody standing outside."
We wish to express our appreciation to the people whose commitment created Handle with Care?, and who spoke with us about the process. Thanks also to RFR reviewers and editors for comments on an earlier version of this manuscript.
(1.) Film versions of Handle with Care? and other research-based dramas focussed on cancer are available from the Canadian Breast Cancer Foundation Community Research Initiative; call (416) 351-3811 or e-mail email@example.com
(2.) In making the case for emotional sociology Carolyn Ellis argues that, "the visualist bias inherent in empiricist social science--that knowledge is seeing--provokes a spectator theory of knowledge" (Ellis, 1991, p. 137). Feminist theorists are among those who challenge the philosophical premise of observer knowledge. Against separateness and disinterest, connectedness is often proposed as an appropriate and necessary standard for acquiring knowledge. In this context, personal experience is a legitimate basis for knowledge claims; and dialogue, engagement (emotional and embodied), and caring emerge as vital epistemic practices.
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Chris Sinding is a social scientist with The Canadian Breast Cancer Foundation Community Research Initiative. She is currently completing her Ph.D. in the Department of Public Health Sciences, University of Toronto.
Ross Gray is Co-Director of the Psychosocial and Behavioural Research Unit at Toronto Sunnybrook Regional Cancer Centre, and Assistant Professor, Department of Public Health Sciences, University of Toronto.
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|Title Annotation:||epistemic practice of creating drama|
|Author:||Sinding, Christina; Gray, Ross|
|Publication:||Resources for Feminist Research|
|Date:||Sep 22, 2002|
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