Situating Care as Feminist Rhetorical Action in Two Community-Engaged Health Projects
Author(s): Maria Novotny and Dawn S. Opel
Maria Novotny is an Assistant Professor of English at the University of Wisconsin-Milwaukee. Her research oscillates around the areas of health activism, reproductive rhetorics and technology, and feminist rhetorics. She is currently co-editing special issues for The Journal of Multimodal Rhetorics on “Curation: A Multimodal Practice for Socially-Engaged Action”, Computers and Composition on “Rhetorics of Data: Collection, Consent, & Critical Digital Literacies”, and Reflections on “Rhetorics of Reproductive Justice in Public and Civic Contexts”. Her work has been published in Communication Design Quarterly, Computers and Composition, Reflections, and Technical Communication Quarterly. You can also learn more about her work by visiting The ART of Infertility, a community arts and infertility organization curating exhibits that portray patients’ lived experience with reproductive loss.
Dawn S. Opel is an Assistant Professor of Digital Media and User Experience in the Department of Writing, Rhetoric, and American Cultures at Michigan State University. She currently serves as a Policy Research Fellow at the Center for Health and Research Transformation at the University of Michigan. An action researcher, she works to improve the design of communication across healthcare, government, and nonprofit organizations for enhanced coordination of patient care. Her work is funded by the Michigan Health Endowment Fund and the U.S. Department of Health and Human Services’ Administration for Community Living. Recent published work appears in Written Communication, Literacy in Composition Studies, and Computers and Composition.
Abstract: This essay builds upon feminist rhetorical study of health and the body, connecting this work to a feminist ethic of care to support action-oriented feminist rhetorical research initiatives related to health care. We intentionally focus on “care” in health activism to situate rhetorical research as care for the communities in which we work—an iterative act of compassion that is demonstrated and committed to through process; through languaging, listening, laboring, and transforming. We then demonstrate in this essay care as situated rhetorical action by citing examples from two community-engaged health research projects. Utilizing a feminist participation action methodological framework, we articulate a collaborative, situated sense of care that offers new scenes for feminist rhetorical practices when working with communities for change.Tags: care, community-engaged research, feminist participatory action methodology, feminist rhetoric, health
Introduction: Rhetoricians as Activists in Health and Medical Contexts
Individuals’ access to health care inhabits a precarious position given the current political climate in the United States. With threats made by the current administration to defund Planned Parenthood, public suspect that the future Supreme Court may reverse Roe v. Wade, and opposition to the United Nation’s breastfeeding policy supported by the World Health Assembly, health care and, moreover, an individual’s right to care no longer appears fully secure. We take the stance in this essay that feminist rhetoricians are well situated to increase our involvement in the nation’s critically important discourses surrounding access, affordability, inequities and quality of American health care.
We recall that as a field feminist rhetorical scholarship has a history of interrogating, recovering, and creating rhetorical theory related to gendered experiences of health and the body. For example, feminist rhetoricians have examined a range of topics that implicate the gendering of health and bodies, including: technological implications regarding the female body (Balsamo), the performance of femininity through the body (Bordo), rhetorics of midwifery (Lay), legal implications of insurance coverage and fertility treatment (Britt), prenatal testing and the genetic model of medicine (Condit), rhetorical analyses of breastfeeding recommendations (Koerber, Breast or Bottle; “Rhetorical Agency”). More recently, contemporary feminist scholarship has assembled and identified new scenes of needed rhetorical inquiry including the visual and cultural critiques of the reliance on fetal (Gregory) and transvaginal ultrasounds (Haas and Frost), analysis of digital forums reinscribing experiences of childbirth (DeHertogh), the role of women’s birth plans (Owens), and a historiographic tracing of the evolution of “infertility” as a transformative word (Jensen). Such feminist rhetorical work has been crucial to calling attention to sociopolitical realms that have and continue to implicate the construction of health and bodies. Further, these scholarly foci have established an exigency for feminist rhetorical approaches to be applied to a range of health care contexts. We take up feminist rhetorical study of health and gender by offering activist and community-engaged approaches to not only building rhetorical theory but changing health practices as feminist rhetorician-activists.
In order to become feminist rhetorician-activists, this essay explores blended methodological and epistemological approaches to health care as a site of situated action. We particularly focus on building a framework for community-engaged rhetorical scholarship. Our understanding of community-engaged scholarship is rooted within the CCCC Statement on Community-Engaged Projects in Rhetoric and Composition, which defines community-engaged projects as “scholarly, teaching, or community-development activities that involve collaborations between one or more academic institutions and one or more local, regional, national, or international community group(s) and contribute to the public good. We use the word project to denote well-conceived activities pursued over time to provide reciprocal benefits to both academic and community participants.” The CCCC Statement poses the question, “Did the project take care to credit all participants and treat marginalized groups respectfully and fairly?”. We begin by focusing on the language of “care” to ponder how the methodological approaches we apply to our research might act as an extension (and be informed by Annemarie Mol’s concept) of care—care being an iterative act of compassion that is demonstrated and committed to through process, through languaging, listening, laboring, and transforming.
In what follows, we draw upon feminist theories to situate care as a feminist ethic and motion its discussion as a feminist rhetorical practice. Feminist participatory action research, we claim, is a methodology that supports care as response-making space for action in community-engaged rhetorical scholarship. It does not just allow for rhetorical theory to be built but allows for rhetorical response. We illustrate this by providing two scenes of feminist participatory action research as a methodology to enact feminist approach to care within health communities. Dawn discusses her work partnering with a federally-qualified health center to improve communication practices. This partnership originated through a combination of serendipity and alignment of needs of a community partner, a family medicine clinic. The research project design was co-constructed with clinic providers and administrators and culminated in collaborative scholarship and advocacy for family practice transformation and healthcare payment and service reform. Maria emphasizes her collaboration in the infertility community with a traveling patient-created art exhibit. This collaboration began as she sought out a community of patient-advocates, discovered others interested in research and advocacy, and began curating patient-artists’ work. Maria pivots between advocacy and academic research in the project alongside her community partners, grappling with ethical considerations such as patient-artist privacy. For each of us, we intentionally discuss our embedded positions within these collaborative projects as it situates how we, as rhetorical scholars, mobilize theories of care into community-engaged action.
Both of us identify as feminist, activist researchers, and see each other as peers that frequently provide a support system for research practices that can feel isolating and difficult. Although our work is far from solitary, as researchers we often feel as though our practices are not legible or understood to either academic or community stakeholders. As Royster and Kirsch discuss, academic research has historically largely privileged what is conceived of as “objective” knowledge that does not value lived experience, and the positionality of the researcher has historically remained hidden to foreground the objectivity of the research. Royster and Kirsch respond by arguing for the value of lived experience of both researcher and of those we study (18). For feminist researchers who choose to embed themselves in research communities as scholar-activists, our work may be seen as additionally far afield from rhetorical, theoretical, or interpretive study. This essay seeks to make visible how care not only builds rhetorical theory but as a rhetorical practice it can support scholar-activist research in the public sphere. We end this essay with a call to action shared by other community-engaged researchers in rhetoric and composition, urging further uptake by feminist scholars interested in and committed to changing how care is attended to in health care and beyond.
A Feminist Ethic of Care
Care is a recurring theme in feminist ethics and feminist rhetorical scholarship. In 1996, Peter Mortensen and Gesa Kirsch saw the field of rhetoric and composition as taking an ethical turn, and Kirsch further articulated a feminist ethic of care for the field based in work by Sondra Harding and the theme of reflexivity in research relationships (Kirsch 256). This ethic of care is frequently discussed in the context of empirical research in composition studies and literacy studies (Kirsch; Kirsch and Ritchie). In rhetorical studies, the concept of care frequently guides and shapes feminist rhetorical theories that examine and critique unjust systems that often marginalize, devalue, or all together ignore scenes and experiences of health.That is, care frequently serves as an ideological lens to emphasize practices in which bodies are not being cared for—allowing for critiqueto emerge. Rather than situate care as a critique, we build on the work of Maria Puig de la Bellacasa to offer care as a methodological response that better supports and acknowledges the needs in these health scenes and communities. Annemarie Mol further elaborates on the notion of care as a process and not a product. In Logic of Care, Mol advocates against the logic that increased patient choices result in greater patient care. Refuting this logic Mol argues for the need to better attend to the concept of care, particularly in the midst of increasing healthcare practices concerned more with measured targeted outcomes than the process in which patients are cared for. We see feminist rhetoricians are well suited to take up Mol’s call to attend to care by reflectively considering methodological responses that may resituate how our rhetorical work cares. This sense of care—as feminist response—is informed through Jacqueline Royster and Gesa Kirsch’s explanation that “care encourages us to assume a more patient, receptive, quiet stance, to ‘sit with’ the text, to think about it—slowly, rather than to take a more aggressive stance in order to ‘do something to’ it as a mechanism for arriving at and acredditing its meaning” (146).
A feminist ethic of care is a concept that is discussed in the health and medical professional community in much the same way as the ethical turn Kirsch articulated for our own field of rhetoric and composition. Braiding together these bodies of ethics-related research is fruitful for community-engaged work in scenes of health and medical. Rosemarie Tong’s feminist virtue ethics of care for healthcare practitioners and Royster and Kirsch’s revision of rhetorical practices are based on an “ethics of care and hope” (Tong 135) to resituate care and its methodological potential to initiate rhetorical action in health communities. Tong, a feminist health philosopher, has called for healthcare practitioners to enact a more feminist ethics of care approach, as opposed to a justice ethics approach, in health and medicine. Drawing differences between the two approaches, Tong outlines care ethics in six points:
care ethics “takes a contextual approach”;
it “begins with an assumption of human connectedness”;
it “emphasizes communal relationships”;
it “works best in the private realm”;
it “stresses the role of emotions (or sentiments) in constituting good character”; and
it is “female/feminine/feminist” (131-32).
She contends that healthcare providers may do more moral good by enacting this ethics of care as it helps “to develop caring feelings as well as conscientious desires and empathic skills” (151).
This ethical framework, we argue, is applicable not only for healthcare professionals but for feminist rhetoricians concerned with health care practices and with patients. First, Tong’s framework reinforces community-centered scholarship practices articulated by Django Paris’s and Maisha Winn’s humanizing methodological stance, which emphasizes reciprocal “relationships of care and dignity and dialogic consciousness-raising for both researchers and participants” as an inherent practice of research that ignites social change and action (xvi). Second, as an ethical framework emphasizing relationships and conscientious aims, it creates an exigency to rhetorically listen (Ratcliffe, 1999, 2005), a guiding practice to practicing research as care. Tong’s feminist ethics of care frames research as care as a methodological approach demanding dialogue, reflexivity drawing upon feeling, sentiment and affect as well as stressing relationship-building between the researcher and the bodies being researched.
Tong’s ethical framework can inform the ways we as feminist researchers work with communities that are in need of care. We find that this framework informs care as an ideological framework through the following three tenets. First, care makes visible the bodies implicated by our rhetorical scholarship. This tenet speaks to the ethical exigency that participant bodies in research must be recognized and must be made visible. Doing so is a practice of caring for the bodies, the participants in our research. Reflecting on how we make bodies more visible in our rhetorical research forces researchers to strategically contemplate not only our methods but the aims of our research. We do well to ask, how do we care for the bodies that we represent in our rhetorical scholarship? How can the caring for bodies bridge private academic spaces with more public practices?
Second, care embraces participatory-centered methods to support the visibility of our participants. This tenet asks researchers to critically question how existing methods represent bodies in our research. Doing so may invite moments to revise, even invite, new methods that invite communities and bodies to participate in our research. Foregrounding care as a guiding research practice thus allows for a valuing of lived experience as a site of rhetorical research. This aim invokes Royster and Kirsch’s concept of “critical imagination, ” thereby rethinking the spaces and methods of research scenes and rhetorical inquiries. For example, how may methods that tack-in to feelings, sentiment and affect make space for addressing rhetorical embodiment? How may participatory methods and participant interpretations of their own texts assist in efforts that care for bodies?
Third, care accounts for the rhetorical researcher’s personal experiences and affect in the doing of this research. In fact, Diane Davis’s scholarship suggests that for the rhetor there is “intractable obligation, and ethical-rhetorical responsibility to respond” (12). Davis’s work aids in situating the preorgins of an affective need to rhetorically respond, which ultimately creates space in rhetorical scholarship to move towards theorizing rhetorical action. We see care as one rhetorical approach that affectively acts. Care, practiced in rhetorical research, thus demands accounting for researcher motivations, researcher positionality in our work on bodies. These three tenets, taken together, stress the importance of reflexive dialogue and relationship building, and responds to Eva Kahana and Boaz Kahana’s concern over “unresponsive care” in which real-life circumstances restrict “ethical ideals of advocacy to serve the best interests of their patients” (22). They advocate for “proactive involvement in health through building alliances” as an effective strategy to confront contemporary bureaucracies in healthcare “which deliver unresponsive care” (Kahana and Kahana 42). Care works in this frame as a responsive approach to rhetorical research. We find that positioning care as guiding methodological framework in rhetorical research, particularly in health communities, can reinforce rhetorical scholarship as extending care.
We build upon these feminist ethics of care to suggest that it may also inform practices for community-engaged research that both builds inclusive steps for action in the public sphere as well as build rhetorical theories for meaning-making. As two rhetorical scholars embedded in two health-related community projects, we seek to show in this essay that one such outcome of our participation and collaboration in these communities can be care—in and of itself. This notion is informed by a methodological stance that advocates for researchers to “work as scholar-allies and view practices and findings as outcomes that can promote a better sense of care for communities. This is the ultimate goal in research as care” (Novotny and Gagnon 74). In the section that follows, we pivot from the ethical framework of care to demonstrate how it evokes a series of rhetorical practices that translates care from theory towards action in health and medicine.
Care as Feminist Rhetorical Practice in Health and Medicine
Care, we acknowledge, has been critiqued by some feminist scholars as reinforcing gendered “pathological masochism,” “fear of success,” or “passivity” (Houston 240). Puig de la Bellacasa’s notion of “matters of caring” offers a justification for a renewed uptake of care in feminist rhetorical research. Her work calls attention and resituates care in our scholarship, by suggesting that
while a critical stance can bring attention to such matters as who cares for whom, to what forms of care are prioritized at the expense of others, a politics of speculative thinking also is a commitment to seek what other worlds could be in the making through caring while staying with the trouble of our own complicities and implications.
Care is then reflexive and responsive. It “thinks with” communities we care for while also “dissenting” from the complexities that arise in our work. Care, then for Puig de la Bellacasa, is “something we do as thinkers and knowledge creators” (41) in that there is a materiality to what we care for and “contributes to mattering in the world” (41). As such, Kelly Dombroski, in her review of Matters of Care, argues that “we must operate our academic analyses of care in such a way as to support, construct, and enact collective change” so as we move away from “piercing critique” towards thinking-with in order to enact more constructive dissent (263).
Puig de La Bellacasa and Dombroski’s discussion of the materiality of care is important for feminist scholars working in and alongside communities of patients and healthcare activists, especially as it acknowledges the multiple competing forces and voices (human and nonhuman) in the doing of this work. Their work addresses Kahana and Kahana’s concern over “unresponsive care” in which real-life circumstances restrict “ethical ideals of advocacy to serve the best interests of their patients” (22). Instead, they advocate for “proactive involvement in health through building alliances” as an effective strategy to confront contemporary bureaucracies in healthcare “which deliver unresponsive care” (42). As co-authors, we recognize the sentiment expressed by Kahana and Kahana, as we have shared our own stories with each other about the need to build a methodological approach that confronts and assists in careful navigation of the rhetorical messiness (Grabill and Pigg) when working in health and medical contexts.
In this essay, we seek to continue in this tradition while building upon this important work, by situating care as a methodological practice that reimagines sites of feminist inquiry—not just for rhetorical inquiry but rhetorical action. We draw attention to care as rhetorical action by reflecting upon our research in two separate community-engaged health projects. These reflections are situated in conversations that we shared as we engaged in care work in activist healthcare projects. As we shared, the two of us gained a greater understanding of this practice of care: interventional rhetorical action undertaken as activist rhetorical scholars and engaged with community partners.
Real, material conditions—human and non-human—impact the rhetorical work of how we care and collaborate with health-related communities and projects. Our experiences working in these scenes have led us to privately question how it is that we practice care in these communities, while negotiating with competing stakeholders, and academic and institutional reporting required of our work with these communities. Reflecting the dilemmas we face as feminist rhetorical researchers confronting the material complicities of the stakeholders involved in our research, we are reminded of Royster and Kirsch’s charting of a new course in feminist rhetorical research which advocates that our work must:
assess current situations, contexts, and institutional forces…to inhabit a sense of caring about the people and the processes involved in the use of language by immersing ourselves in the work, spending time thinking broadly and deeply about what is there, not there, and could be there instead. The effort is to think beyond the concrete in envisioning alternative possibilities in order that we might actually work, often collaboratively, toward enacting a better future.
Responding to Royster and Kirsch, we suggest feminist participatory action research as one framework for enacting care in our research when confronted by the complexities of engagement with multiple human and non-human stakeholders.
Feminist Participatory Action Research as a Methodological Instantiation of Care
We offer feminist participatory action research (FPAR) as a methodological frame to support engagement in participatory and transformative scholarship. FPAR emerged in response to participatory action research, defined as a collaborative approach between community partner and researcher to “to facilitate knowledge construction, education, collaborative learning, and transformative action” (Lykes and Hershberg 332). Like participatory action research (PAR), FPAR “aims to democratize knowledge production as a precursor to taking action to improve the quality of people’s lives” but incorporates “feminist theories of oppression, domination, power, and social justice with participatory methods” (Ponic et al. 325). In this manner, Diana Gustafson and Fern Brunger suggest that “feminist PAR explicitly subverts the traditional relationships of power that characterize other forms of health research” (1000). Specifically, applying a feminist lens to research in communities related to healthcare activism “means recognizing that academics are typically in an advantageous position of power and must be cognizant of this privilege” and feminist perspectives work to uphold researcher relationality by “challenging and disrupting dominant relations of power, including colonialism, and work to validate culturally-specific forms of knowledge” (Darroch and Giles 29).
For example, a researcher applying for research approval to work with a disabled community faces specific ethical scrutiny. Gustafson and Brunger explain how ethics boards reviewing research applications routinely constitute persons with disabilities as populations at risk, and hence, vulnerable. At surface level, researchers can take such ethics review questions as a proactive intention to protect marginalized community/ies. Yet, Gustafson and Brunger note that in taking such precautionary measures, the researcher and the research subject, in this case the disabled community, “become individually implicated in reproducing this problematic social category” (1003). As a result, a colonial mentality of researcher “saving” the disenfranchised research subject often develops, whether through practice or in the writing up of a research design and/or results. We point to Gustafson and Brunger’s example to underscore the various moments in which colonial power structures influence and guide much of our work with marginalized populations, many of which often appear in rhetorical studies concerned with health and medicine, given that sub-field’s commitment to “concern for the humane-and the distinctly human-dimension of health and medicine” (Keranen 105). We argue that it is only when we as rhetoricians engage to change these power differentials in partnerships in health and medicine that our work as rhetoricians will begin to effectuate real change for the communities we seek to improve. Further, care, as an outcome, should be prioritized as a value in rhetorical studies if we are to make arguments for our participation and collaboration in interdisciplinary health and medicine projects.
FPAR then works to account for power relations and incorporate interventions representative of both researcher and community insight. Specifically, FPAR as a methodology operates from the following framework (see, e.g., Frisby et al.; Gatenby and Humphries):
Both researchers and community groups initiate the project.
Both researchers and community groups (emphasizing community perspectives) develop the research questions/s.
Both researchers and community groups (emphasizing community perspectives) conduct the research.
Both researchers and community groups (emphasizing community perspectives) analyze the data and develop research findings.
The research becomes linked to advocacy through community and researcher participation. Participation in the research itself becomes an empowerment tool and mobilizes collaborative plans for intervention.
In disseminating the data, results are communicated throughout the research process and both researcher and community share the findings and work collaboratively to publicize them.
In this way, FPAR distinguishes itself from other participatory action research methodologies in its emphasis on researcher reflexivity and full participation throughout the studies with community members (Frisby et al.). FPAR as a methodology comes with a host of challenges, particularly because of its commitment to working with community stakeholders throughout the duration of the project. Further complicating FPAR as a community-centered approach is the reality that “academic researchers embedded in traditional and often patriarchal setting receive little training in how to facilitate power-with approaches that cultivate the collective resources that all partners bring to the table” (Ponic et al. 325). In turn, this leaves few, if any, guiding protocols for research support. An additional strain to FPAR is the need for the researcher to embed within the community, often for a lengthy duration of time. While some may argue that this poses difficulties for the practice of FPAR (particularly on a time-constrained tenure track of academic employment), we see value in the scholarship that results from this commitment to community-engaged work on this level, and point to the CCCC Statement on Community-Engaged Projects in Rhetoric and Composition for language to define and validate this time-consuming and often invisible work. Administrators can use the CCCC Statement to advocate for community-engaged scholars in their retention, promotion, and tenure. We point out these challenges of FPAR as a part of orienting feminist rhetorical research in health care beyond a relationality with a static object to rather a relationality with dynamic and complex individuals.
Approaches to Care in Two Community-Engaged Health Projects
In what follows, we draw upon our own projects to illustrate FPAR as practicing care in community-engaged (and feminist rhetorical) health research projects. We offer a glimpse of the research process at several moments critical to this methodological framework. Specifically, we illustrate the extension of care through the methodological application of FPAR in the following moments:
designing the project;
researching the project;
advocacy through and beyond scholarship.
Throughout these four iterative moments of research, the researcher remains embedded in the community site. Such embeddedness we argue is of particular importance from a feminist framework as it allows for active researcher reflexivity throughout the research process. It is in this reflexivity, we argue, that research becomes oriented more closely as advocacy and less as academic, rhetorical scholarship—important for feminist rhetoricians engaged in community health work and practicing care as rhetorical research.
1. INITIATING RELATIONSHIPS: A researcher develops relationships with community members and other stakeholders with no expectation of a research collaboration. From a relationship, a research project may begin to take shape, based on shared interests, values, and community needs, rather than the research agenda of one researcher.
Maria’s example: In May of 2014, I traveled to Washington D.C. for an infertility advocacy event. At the time, I had just completed my first year in a rhetoric and composition PhD program at Michigan State University. Like many other first-year PhD students, I was in the very beginning stages of formulating my research trajectory. Wanting to focus on the intersections of feminism, infertility, and rhetoric—yet unsure how to do this work—I traveled to the east coast to meet other infertile women from around the country and listen to their stories and why they decided to attend this event. While I understood that participating in this event would inform my research, I also had a personal connection to this event, as someone with my own infertility diagnosis and (as a result) had recently begun running a local infertility support group. Interested in meeting others who ran support groups and wanting to share my own story and frustrations as an infertility patient, I saw myself attending the advocacy event as a “scholar-patient-advocate.” My motivation then for attending and working with this community was fueled by both lived experience as well as a need to engage in rhetorical research that would be a catalyst for greater community change.
At the event, I met Elizabeth, another infertile woman and professional photographer who began to make art as a method to process her own grief around an IVF cycle that resulted in the miscarriage of twins. Like me, Elizabeth lived in Michigan and shared that she had recently curated a local art exhibit featuring some the lived experiences of infertility patients. Spending the day together advocating for legislation that would improve access to alternative family-building treatments, I began to share with Elizabeth how I, too, had turned to creative activities to make sense of my infertility diagnosis. As we talked more and opened up about our experiences, the two of us decided to continue meeting upon our return home. To be clear, our intention in meeting was not to formalize our shared experiences into a formalized research project, but to cultivate a relationship and offer support to each other as we ran infertility support groups. Thus, it was through our emerging friendship that we began to see threads and openings for how our shared experiences could become a catalyst for a larger infertility advocacy and art project.
This origin story of how research emerges through lived experiences and relations, an important aspect of practicing care. It emphasizes the need to embed in the community and with the people who identify as community members. It suggests that rather than try and find a site to do research, we turn inward and more reflective, to collaborate with members and initiate authentic relationships both parties (researcher and community member) are invested in. Further, we find that this story mirrors Royster and Kirsch’s feminist rhetorical practice of strategic contemplation, which urges feminist researchers to “pay attention to how lived experiences shape our perspectives as researchers and those of our research subjects” (22). Meaning, it was Maria’s orientation to her own lived experience with infertility that shaped not only how she found her research site, but how she developed a collaborative and community relationship with research subjects. As feminist scholars, we can draw on our rhetorical training to respond to the injustice we, as patients, have had to navigate. Nonetheless, such work requires us as researchers to self-disclose personal information that other scholars, not researching personal communities, can avoid. This is because “embodiment encourages a methodological approach that addresses the reflexive acknowledgement of the researcher from feminist traditions and conveys an awareness or consciousness about how bodies—our own and others’—figure in our work” (Johnson et al. 39). This embodied orientation to our research, we argue is an implication of FPAR that embraces the materiality of care as echoed by Puig de la Bellacasa. More importantly, attending to embodied orientations to possible sites of feminist rhetorical research in health communities, we argue and will illustrate further, shifts rhetorical scholarship toward public advocacy.
Dawn’s example: When I interviewed for my current position, I visited campus and gave a research talk on my postdoctoral research at Michigan State University. In the audience was an undergraduate student, whose aunt is a physician at a family medicine clinic (Dr. Cathy Abbott) who serves primarily under-resourced patients. My talk focused on my research on improvement of clinical service delivery through online education initiatives for providers of care to under-resourced patients. At the talk’s conclusion, I talked about next steps for the research that included a desire to work on service delivery reform alongside clinicians serving under-resourced patients and communities, rather than building resources from the perspective of those institutions funding that work (private foundations, networks, and consultancies). I was concerned about the lack of engagement on the project from the intended users of the resources, and my attempt to advocate for those users and their patients. Four months later, I received an email from Cathy through a colleague, Bill Hart-Davidson. Providers at the clinic reached out to meet, and in that meeting, expressed a hope that Bill and I might partner on a clinic transformation project, to study communicative practices in the clinic in order to suggest interventions for improved service delivery and patient experience. (These communicative practices are the subject of service delivery reform efforts that my postdoc’s online resource project was designed to address.) The family medicine providers had conducted some of their own research and were seeking out a partner to help them find ways to move forward.
Dawn’s example illustrates a situation where an identified research direction matched an identified need of a partner, the family medicine clinic. These interests met rather through serendipity, another key factor of feminist research methodology (Royster and Kirsch). While Dawn articulated suggestions for future research in a public forum, it was the relationships between the undergraduate student, the program in which the undergraduate student was enrolled (where Dawn and Bill teach), and then her aunt Cathy and her practice, developed through a shared interest and needs of the clinic, that led to the research project.
2. DESIGNING THE PROJECT: The parameters of the research project should be co-constructed by the researchers and research participants, as well as other stakeholders to the project. The design may illuminate tensions in power relationships among stakeholders.
Maria’s example: The origin story of how I met Elizabeth illustrates how The ART of Infertility organization emerged over time, through a relationship, and ultimately was slow. There was no imperative pushing us “to create a sustainable research project”. Instead, both of us spent time listening to the needs of ourselves as infertile women, the needs of patient-artists already creating pieces of art reflective of their infertility, and the needs of the infertility community writ-large. It was through this process of listening to each other and to the community that The ART of Infertility began to take shape and a “a research design” emerged. As we chatted and ate dinner in the Brody cafeteria on Michigan State’s campus, Elizabeth and I slowly began to identify the objective of the organization, what would count as our “data” sets, how we would gain participants, the methods in which they would circulate stories and artwork, and how to fund the project. Slowly, after several conversations, we found ourselves with the beginnings of a project.
Fast forward five years, much of what was first discussed and identified at these Brody cafeteria meetings has either changed or has needed to be revisited. Positioned in this work as both members of the infertility community and as researcher-advocates, we have an embodied orientation to the outcomes of this research project which has naturally led to a self-reflective process, interrogating what aspects of the project have been more and less successful. In doing so, and in learning from these experiences, we have had to grapple with new questions of ethics, methods and data analysis. For example, who owns the art? This question was not an issue until we discovered other researchers contacting the patient-artists to gain copyright for the artwork. One such example can be found on the cover of Robin Jensen’s book Infertility: Tracing the History of a Transformative Term. The artwork displayed on that cover is artwork that is part of the project’s permanent collection. Yet, the artist also gave Jensen permission to use this art for the book cover—without indicating a need to reference the project. This example raised new ethical and copyright issues for the project and, and Elizabeth and I as co-founders, to undertake. Neither the patient-artist nor Jensen sought to leave out a reference to The ART of Infertility organization, nor did Elizabeth and I plan for this artwork to be circulated beyond the project. Yet, as the project has grown, new issues like copyright, ownership, and circulation have emerged.
Such stories recounting how community-embedded research projects take shape and shift given the addition, and sometimes subtraction, of stakeholders is important to point out because it emphasizes the continuous cycle of reflexivity that occurs in a FPAR research design. As The ART of Infertility has grown and changed, Elizabeth and Maria have had to alter their methods and review their processes. New ethical dilemmas have emerged and new insights on how to analyze data have resulted. The process is recursive and, importantly, emotionally exhausting. When designing a project that you share experiences with, it impacts not only as a researcher but as a patient stakeholder in the project’s mission. This bodily tension of positioning oneself as “scholar-patient-advocate” is challenging as we must negotiate multiple stakeholders, positionalities, and objectives. Yet, methodologically tuning into and towards this tension “opens up spaces for observation and reflection, for new things to emerge, or rather, for us to notice things that may have been there all along but unnoticed” (Royster & Kirsch, 2012, p. 90). We heed Royster and Kirsch’s claim and seek to practice noticing what was previously unnoticed in order to practice better care for a community in a project that seeks to ultimately create sustainable change.
Dawn’s example: As mentioned above, the project design in the clinic transformation project was a co-constructed design based upon providers’ and administrators’ understandings of problems with patient experience in the clinic caused by communication practices. A research team, consisting of my research partner Bill and myself, providers in the clinic including Cathy, and administrators to the larger unit where the clinic is situated, was created to meet and determine the scope of the project and its design. All members of the team understood that some degree of empirical research was needed to assess what kinds of communication practices necessitated intervention. Bill and I provided some qualitative research methods frameworks to design the study, but we presented these in a meeting in which everyone discussed their ideas and interests in the research process. One theme that emerged early was a tension between the external administration unit that oversees the clinic, the teaching physicians that work in the clinic one day per week, and the staff that works in the clinic full-time. The staff has the most experience in the clinic yet is the most subordinate in terms of authority. These tensions begin to expose the power relationships that undergird clinical communicative practices. From a perspective of a FPAR researcher and advocate, it was important for me to recognize and draw attention to these tensions, rather than simply carry out the research aims of the most powerful on the project.
3. RESEARCHING THE PROJECT: Data collection is a transparent and embedded process in the environment that is the subject of the research. Active roles are taken by both researchers and participants.
Maria’s example: Those who participate in The ART of Infertility project are frequently patient-artists with an infertility diagnosis, and as a project that is more public-facing than research-focused, what resembles data and how it is collected may appear differently than more traditional academic projects. Data collected in this project resemble two forms—the visual piece of art and the accompanying narrative attached. To collect these pieces of data, we post calls for infertility-inspired art on art call websites, on The ART of Infertility social media pages and websites, and frequently collaborate with other community infertility organizations to circulate the calls on their networks. When pieces are submitted, we try to accept each piece and show at least one piece from each patient-artist. This decision is notable and important because we understand, from our personal experiences with making art about infertility, how the artwork itself functions as a piece of activism. As an invisible disease, art serves as a material marker calling for others to witness the lived experiences that so often are invisible and, as a result, misunderstood and stigmatized. Therefore, as co-curators we try to evoke a sense of care for those who choose to self-disclose about their lived experiences with infertility by publicly displaying their art.
Another component of the project that requires care is how participant identities shift and change as they “resolve” their infertility. That is, when patient-artists agree to participate in the project, they submit their artwork with a narrative label reflecting on the connections between their composition and their lived experiences with infertility. Release forms are signed and indicate how, where, and who owns the pieces of art. This is important as the artwork is then later shared in curated exhibits around the country. Nonetheless, this “data” is not static and as such not always reflective of how the participant currently identifies in the infertility community. For example, Elizabeth and I have found through their project a need to check-in with prior patient-artists and understand how they currently identify with the infertility community. Much of this is because infertility is not a stagnant identity. For many in the community, they seek to “resolve” their infertility by successfully building their families. For some patient-artists they no longer feel comfortable showing their piece of art as they no longer view themselves as infertile. For others, they may have built their family and are okay with their art being shown but want to revise their artist label which appears alongside their piece. For instance, when a patient-artist first submits their piece it may reflect their current point in their infertility journey, such as undergoing their first round of in-vitro fertilization. Yet, three years later, the same patient-artist may have suffered numerous failed rounds of IVF, discovered an additional factor impairing their fertility, and now are in need of using a donor embryo. As such, this patient-artist may now want to have their story—present in the exhibit—better reflect their current reality: coming to terms that they may not be able to have a biological child. While this may seem like a minor request, this is a patient-artist’s new identity and so, while it may seem that such details lack importance, it often matters personally to the participant.
As directors and curators of The ART of Infertility, Elizabeth and Maria have had to grapple with how to build in check-in moments with their patient-artists into the operation of the project. At the beginning of the design of the project, this was an issue undenounced to them. They did not anticipate the need or desire for patient-artists to revise their narratives as they continued on their infertility journey. How to curate and take care of the representation of their patient-artists is yet another instance of how FPAR serves as a model to support continual communication between participants and researchers. Further, Elizabeth and Maria have found that curation is not an objective practice but rather a rhetorical practice that requires trust and enacts an ethic of care. Many patient-artists are self-disclosing for the first time about their experiences of reproductive loss. Maria and Elizabeth view it as imperative to make sure every effort is made to protect the patient-artist and curate a show that makes them feel safe. As such, the project frequently features the use of pseudonyms to allow individuals to be anonymous. In this way, our work as researchers with our participants must be recursive, tending to issues of identity shifts and participation representation
Dawn’s example: In the months following the designing of the project and IRB approval, Bill and I collected data for the clinic transformation project by formal observation of the workflow in the clinic, and also met regularly with physicians, nurses, medical assistants, and administrators in the clinic. These are both formal and informal meetings, so that we continue to build understanding and trust amongst all participants to the study. We advocate on behalf of patients and staff based upon our research but also based upon the relationships that we have developed over the last several months. And we are still in the clinic, preparing to test interventions that we hope will improve quality of care for patients, in this clinic and in clinics across the country. Finally, we have engaged in collaborative scholarship with our provider partner Cathy, analyzing data and writing a research article for an interdisciplinary audience (Opel, Abbott, & Hart-Davidson, 2018).
4. ADVOCACY BEYOND SCHOLARSHIP: Publication venues are considered that are beyond traditional silos of academic research in order to extend the reach of the research and “take it public”: the public is engaged with research outcomes.
Dawn’s example: Healthcare service delivery reform is an issue with implications at the clinical practice, communication, and policy levels. For this reason, our research findings will be communicated through a three-fold strategy. We are first and foremost committed to presenting our findings at the level of the clinic itself, as well with its institutional and administrative managers who control resources for change in the clinic. These communications take the shape of presentations and memos designed to present possibilities for action within the clinic, as clinical practice service improvement and improved quality of care for underserved patients is the primary goal of the project. Caring for the clinic and its patients means, for this project, that our work in the clinic only begins after the conclusion of data collection and analysis. For scholars of communication, rhetoric, and user experience, we have communicated our work through scholarly publication outlets such as journals in our field and conferences with both researchers and practitioners (Opel, Abbott, and Hart-Davidson, 2018; Opel and Hart-Davidson, 2019).
Dawn also works to present the findings from this work as advocacy for service reform in FQHCs (federally-qualified health centers, or those that serve under-resourced patients and communities), in venues where policymakers and advocates for healthcare service delivery reform will convene. These include a research policy fellowship that includes discussions with policymakers, lobbyists, and policy analysts, as well as participation in community forums and televised roundtable policy discussions. Advocacy for healthcare payment and service reform is integral to broader legislative and policy efforts to protect the Affordable Care Act and Medicaid and Medicare expansion. This adds an increasingly political dimension to Dawn’s research, complicating her relationships with stakeholders to projects such as this clinic project, but also offering a policy-focused opportunity to impact the lives of people seeking healthcare access and improved quality of care.
Maria’s example: Using art as a method of health activism, my orientation to academic scholarship is perhaps flipped compared to Dawn’s orientation. The research I engage in with The ART of Infertility is, by its origin story and design, already oriented towards infertility education and advocacy. I theorize this work then back towards academy, as a process that asks researchers to listen to what can be learned from engaging in rhetorical methodologies outside of the academy. In this way, the outcomes of this research indicate that rhetoricians have already acquired skills that allow us to build communities that effectively intervene in unethical health practices. Using rhetorical and visual analysis in the coding of data, I draw upon that analysis to identify current infertility community needs that appear in the patient created artwork. In this way, the analysis is always returned, reused, and revised by the community of study.
Embedded as a scholar-patient-advocate in the community, Maria faces a series of challenges. For instance, it takes time to engage in this type of community work and can constrain those who have limits on their time, such as graduate students. She also situates The ART of Infertility as a public facing entity, one not always clearly linked to academia. This requires dedicating time to sustaining that public entity, including posting on the organization’s social media pages, hosting art exhibits, and managing the collection of art. Community-engaged rhetoricians are not always positioned so actively in the day-to-day management of such projects. As such, Maria’s example suggests to researchers interested in engaging in a similar line of organizational building that such work requires a long-term commitment to sustaining the developed projects. This nod to the time activism and community-engagement requires has been articulated by other folks in the rhetoric and writing studies. For instance, Malea Powell in her 4C4Equality interview shares “When I was younger I thought activism meant going out in the streets, carrying signs and yelling, or standing on a soapbox…Now I know that activism, real sustainable change, is a long road. A long set of roads” (n.p.). The practice care through an FPAR framework supports Powell’s frank discussion of the time and commitment required of true activism, acknowledging that change does not occur overnight. FPAR guides us to care for our community, listen to their needs, revise as needed, negotiate with those we may not agree, come back to the table with a new idea, and continue making progress to our end goals.
A Community of Care: Framing Future Feminist, Community-Engaged Rhetorical Interventions in Health and Medicine
Although the term “care” may not be employed, per se, there are communities in the field of rhetoric and composition where the tenets we articulate for FPAR and our own projects are familiar. Our work in the aforementioned projects aligns closely with the CCCC Statement on Community-Engaged Projects in Rhetoric and Composition and the literature that is cited in the Statement, largely comprised of scholars in community-literacy studies and in literacy research, although it stresses that “effective community-engaged projects can take many forms, shaped by local resources and needs, and can yield a variety of outcomes, including interactions, events, or artifacts of public and intellectual value” (CCCC Statement). The Statement mentions several rhetorical historical projects, particularly partnering with members of marginalized communities. We see a community of care taking shape within the field of rhetoric and composition: those conducting community-engaged scholarship at the site of action of health and medicine. We close by aligning our projects discussed above with the embedded community action-oriented work already being deployed by engaged scholars in rhetoric and composition, and urging further uptake by feminist scholars interested in and committed to changing how care is situated in healthcare research. Several scholars of rhetoric and composition have recently published scholarship demonstrating participatory, community-engaged approaches to rhetorical study of health and medicine. Melanie Yergeau writes “in equal parts as a rhetorician and autistic activist” (5), using stories of autistic people to theorize neuroqueerness as an identity and an alternative autistic rhetoric that complicates and challenges notions of the rhetorical (Yergeau). Rachel Bloom-Pojar conducted an ethnographic study of a summer health program in the Dominican Republic, working alongside translators and community members and ultimately theorizing a framework for the rhetoric of translanguaging for improved healthcare delivery (Bloom-Pojar). Timothy Amidon works alongside firefighters and technologists to study literate practices in the field and improve health and safety conditions for the firefighting community (Amidon et al.).
These are but three examples of recent scholarship that engage with communities, care for them in many of the same ways we articulate in this essay, and make and use rhetorical theory to work for social change. Taken together, they offer a glimpse at how intention, method, and positionality affect the care we afford to our research participants and their communities in health-related research projects. In a time when American healthcare policy grows in uncertainty and complexity, and the most under-resourced consistently go without access to affordable, quality health care, rhetoricians are urgently needed to make this turn to engagement and activism. In this essay, we have laid out our individual approaches to care as well as included other rhetoric and composition scholars we view as taking up this approach. But more explicit discussions about care and how we as a field practice care—in our research sites, in our classrooms, in our departments, and in our communities—must be had, especially given contemporary politics that make efforts to not care. As feminist scholar-activists, it is our task to confront these injustices through not only our teaching but through our methodological design. FPAR is one such method we see as assisting in actively extending care to the populations we work with. As a research community, we can practice care as a feminist rhetorical act.
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