Intervening in #Access2Care: Towards a Rhetorical Framework for Relational Advocacy

On July 25, 2018, a CNN headline proclaimed, “40 years later, why is IVF still not covered by insurance? Economics, ignorance and sexism.” Published on the fortieth anniversary of the first successful in vitro fertilization (IVF), the CNN article took a critical approach toward the milestone medical achievement. The article noted that while eight million children have been successfully born through IVF since 1978, access in the US to fertility-related services remains relatively stagnant due to inadequate insurance coverage. To date, only seventeen states have mandated insurance coverage for treatment (RESOLVE). For those diagnosed with infertility living in a non-mandated state or without insurance, this means that the cost of having a biological child is high—financially, emotionally, and physically. The burden is equal for those who seek other alternative family-building options to have a child, through services such as adoption and surrogacy. Each have out-of-pocket costs similar to fertility treatments like IUI (intrauterine insemination) and IVF.

Some feminist scholars (Rowland, Woollett, Raymond) and bioethicists (Htut Maung) disagree in claiming infertility as a medical issue. Instead, their arguments suggest that infertility should be understood more as an individual desire, or value, for a family—not as a health condition. Yet, for those who are infertile, the barriers to care are very real and experienced personally. Efforts to make these barriers to care better understood by public stakeholders have been initiated by the infertility advocacy community. Examples include the World Health Organization’s declaration of infertility as a disease, a white paper reporting on the limited state of patients’ access to fertility care published by the American Society for Reproductive Medicine, and a series of articles focused on patient access to fertility services featured in the medical journal Fertility and Sterility. Rhetorically, these steps illustrate the strategic use of medical ethos (Molloy) to construct an advocacy narrative whereby infertility is defined as a disease.

In this article, I focus on the infertility advocacy campaign #Access2Care, which draws upon medical ethos to contest ideologies that infertility is merely a privileged desire for a family. Take the #Access2Care tweet below (see Figure 1). Embedded in the tweet is a hyperlink that defines access to care as providing anyone the means to build a family. The logic imposed by defining access in this way suggests that if one has the ability to access treatment and/or alternative family-building services, such as adoption, then an infertility resolution will be achieved. In this way, access to care is intended to empower those to have more options to building a family.

Rhetoricians who self-identify as community-engaged scholars seek for their research to contribute to a larger public good. Cathryn Molloy et al. note that rhetorical engagement with interdisciplinary fields, like health and medicine, naturally allows for rhetorical scholarship to contribute to advocacy projects, claiming “For many of us, embodied research is a natural fit for the other forms of health advocacy in which we are moved to participate” (353). For myself, an infertile woman who has participated in these advocacy initiatives, I often grapple with my embodied positionality as both an infertile advocate and a rhetorician. Embracing this duality, I draw upon observations made while attending infertility advocacy events and data from several research projects that interview women about their infertility.

This article then examines tensions within advocacy campaigns, like #Access2Care, which seek to improve access to healthcare, yet, at times operate within an advocacy framework that fails to listen to the very subjects they seek to empower. Ultimately, such actions lead to a misrepresentation of what empowerment means for the advocacy subject, and, in doing so, fracture coalition building. In response to these shortcomings, I outline a rhetorical framework built on relational advocacy and illustrate how rhetorical scholars can contribute to advocacy campaigns.

A Relational Advocacy Framework

Ellen Cushman notes that while rhetoricians seek to empower the communities we study, they must also grapple “to make knowledge with them and with respect to them” (1). Cushman’s words are useful to identifying a path forward for rhetorical scholarship invested in advocacy initiatives. Specifically, her work gestures to shifting analysis from the passive construction of advocacy appeals toward building models that incorporate the very persons advocacy work seeks to empower. In this way, for aims of advocacy to be effective, they must also be relational.  But what does a relational approach to advocacy look like in practice?

A relational advocacy framework operates on the premise that to be accountable to other bodies, one must practice relationality. The idea of relationality is not new and is rooted in indigenous traditions. For Indigenous scholar Shawn Wilson, to practice relationality is to practice respect, reciprocity, responsibility, and humility. This means that the researcher is the role of the mediator:

We are mediators in a growing relationship between the community and whatever it is that is being researched. And how we go about doing our work in that role is where we uphold relational accountability. We are accountable to ourselves, the community, our environment or cosmos as a whole, and also to the idea or topics that we are researching. (106)

Illustrating what relational accountability looks like in practice, Andrea Riley-Mukavetz, in her work with the Odawa community, offers a series of moves that invite this shared relationality when working alongside communities our research seeks to uplift. For her, relationality means “shift[ing] perspectives and listen[ing]” to those who are represented. Relationality, then, is a process that demands that “reflection and embodiment is central to practicing relational accountability because it creates an opportunity to put relationships at the center of research” (112). Drawing on Cushman, Wilson, and Riley-Mukavetz’s notions of relationality, my relational advocacy framework suggests that one can draw upon their positionality as rhetorician-advocate to design relational advocacy campaigns that (1) actively listen to the constituents represented in research and/or advocacy, (2) work to identify any slippages where tensions may emerge, (3) bring such slippages to the attention of advocacy campaign directors/organizations, and (4) continue to mediate tensions between the larger advocacy organization and those represented by the organization.

Relational Advocacy in Practice

As an infertility advocate and rhetorician, I illustrate how I practice relational advocacy in my infertility work on #Access2Care using a four-pronged approach.

Prong #1: Listening to Constituents Represented in Advocacy Campaigns

Advocacy campaigns, especially those tied to health-related initiatives, not only represent constituents but also represent the very bodies that constituents live in. In the context of women’s health advocacy, this means that “narratives about women’s health in public discourse have material consequences . . . on the perspectives and identities offered to us in the stories that make up our lives” (Dubriwny 6). Language in health campaigns becomes a tool that produces both an exigence for an advocacy issue and simultaneously constructs the subjects who embody that issue. In the context of the #Access2Care campaign, lack of access serves as the exigency while also circulating a particular construction of the infertile subject—one who requests access because they desire a family.

At issue in these health advocacy campaigns are assumptions that the language of the campaign fully represents and accounts for the subjects at stake in the campaign. Yet, as rhetoricians, we know that “language represents and yet never wholly captures embodiment . . . . We cannot escape language: it arguably constructs a sense of reality. And we cannot escape embodiment; it is through the body that we construct language” (Novotny & Gagnon 88). Given the entangled relationship between embodiment and language, how may we collaborate with advocacy groups to mediate these apparent irreconcilabilities? One option offered can be through the practice of listening.

For instance, listening applied to #Access2Care requires addressing the multiple meanings imposed by the advocacy narrative and the implications of those meanings on constituent bodies. While #Access2Care functions as a cohesive narrative, we must remind ourselves to consider the voices and perspective not represented in the advocacy appeal. This requires asking critical questions and to listen to those perspectives that may not be accurately represented in the narrative appeal. Examples of such questions include: Do all infertility patients support this advocacy position? On whose behalf is this campaign speaking? And what are the implications of this advocacy appeal? These questions help guide more critical listening and consider those perspectives and voices not included in a cohesive appeal. Such considerations matter because “if the bodies are where the stories reside (on and in), then the bodies are also where the research and the there-ness of relationship manifest” (Novotny & Gagnon 88). In this way, actively listening to the stories that are offered allows for a more nuanced understanding of how those stories told by the advocacy campaign may be contested or not fully representative of the advocacy subject. These moments are rhetorical slippages.

The next prong offers an example of the implications of listening, suggesting that, in doing so, such discrepancies between the advocacy campaign and advocacy subject may emerge.

Prong #2: Locating Rhetorical Slippages

“Rhetorical slippages” is a term offered by John Gagnon and calls upon rhetoricians to examine the “ways in which terms and concepts slip into more simplistic forms that fail to account for important nuance and detail” (7). In his work, he applies this definition to analyze human trafficking advocacy campaigns, which are frequently “driven by the impulse to reinscribe belief rather [than] to enhance in-depth understanding” (7). As a result, the advocacy that emerges through these human trafficking campaigns reinforces not only “a lack of understanding but [also] in the creation of fictions” (8)—recreating a series of discursive structures that fail to fully empower the human trafficked subject themselves.

By listening to the subjects represented in the #Access2Care campaign, one can locate similar impulses to reinscribe belief rather than to actively listen and understand the needs of infertile individuals. To understand how this happens, I share a brief anecdote from Meg, a participant in one of my research projects, who self-identified as an infertility advocate. At the time of her participation, Meg and her partner did, in fact, have access to care. Yet, despite this access, they were still unable to become pregnant. Unable to “beat” their infertility diagnosis, she shared with me how she was struggling to come to terms with living as a childfree couple. She explained: 

I feel like my experience hasn’t belonged or hasn’t been validated. . . . I think the hardest thing [is] hearing people say in different ways that I don’t want it enough, because if I wanted it enough, I would be adopting or I would be trying donor eggs or something else. That’s really hard to hear, and that’s from the infertility community. . . . There’s a lot of policing of woman’s choice happening right now. . . . Like I said, even within the infertility community, I feel like my experiences diminished a lot.

Meg’s story contests a main principle operating within the #Access2Care campaign: if one has the ability to access care, then one has the ability to become pregnant and resolve their infertility; however, for Meg, this was not the case. Additionally, being childfree was not something she felt empowered to choose. Meg’s story points to the danger of constructing a singular subject representing an advocacy cause and to the importance of listening to stories to see if any slippages are occurring. By attending to the rhetorical slippages, interventions can be made in advocacy campaigns that may misrepresent the very subjects who advocacy campaigns seek to empower.

In the prong that follows, I detail how I embrace my dual positionality within the infertility community to begin to account for stories like Meg’s, which run in opposition to the campaign’s core principle. 

Prong #3: Surfacing Slippages for Advocacy Organization Recognition

Surfacing slippages in advocacy campaigns requires our rhetorical scholarship to become more community-engaged and be recognized as adding value to the design and implementation of advocacy initiatives. Feminist participatory action research (FPAR) is one such method, out of several, that begins to connect our rhetorical research with the communities we study. For instance, in “Situating Care as Feminist Rhetorical Action in Two Community-Engaged Health Projects,” Dawn Opel and I articulate how FPAR can serve as tool for rhetoricians to contribute to social change in community health projects. We note that “intention, method, and positionality affect the care we afford to our research participants and their communities’ health-related research projects” (96) and suggest that “rhetoricians are urgently needed to make this turn to engagement and activism” (109). Rather than ignoring the embodied tensions we may have as rhetoricians who have stakes in the health initiatives we study, we may be better positioned to tune ourselves toward those tensions to ponder how we may use our positionality to resolve said tensions. In my work, I do this by drawing upon my dual positionality as infertile scholar to enter advocacy spaces where the design, initiatives, and proposed aims are discussed. This is what I see as surfacing slippages: locating the tensions in my body, in the perspectives of the subjects of the campaign, and in the advocacy narrative that circulates.

One example of how I do this is by attending RESOLVE’s annual Advocacy Day, where patient advocates appeal to national representatives for support in a variety of legislative initiatives. While I do not always agree with the legislation put forward, staying involved in that space is essential to slowly surfacing the moments in which the advocacy narrative fails to represent who is implicated by that narrative—the infertile patients. This work is often invisible labor and noted on my curriculum vitae as “volunteer community service.” Yet, this work is more than just volunteering. It is relationship-building among the advocacy organization (in my case RESOLVE), other constituents who volunteer their time for the campaign, and a more situated understanding of how my academic training may serve and contribute to more successful advocacy initiatives. In short, this dual positionality allows me to build trust and surface the slippages advocacy organizations may fail to acknowledge. Notably, though, such is an ongoing process—one that may be slow and require patience in its practice.

Prong #4: Maintaining Commitments to Act as Mediator

Cultivating relationships between researchers and organizations requires not just trust but also time. Often, when embarking on a community project, questions emerge about how to begin a community partnership. Yet, not often is the time spent on maintaining those community relationships. Time, however, is essential in coalition building advocacy work.

Julie Lindquist, writing about the co-construction of scholarship, explains that this type of collaborative meaning-making work “is a long uneven process, and it develops within the context of carefully cultivated relationships of trust between researchers and participants” (649). This sentiment about collaborative research can also be applied to the relationship between scholar-advocate and advocacy organization. Developing trust, not only on the onset of a project, but also throughout a series of years and campaigns, requires extensive time and a commitment on the researcher’s end.

The time taken to establish connections and trust in my collaborative work with #Access2Care, and more broadly with RESOLVE, has been a process first initiated back in 2014 when I attended my first advocacy event. Since then, I’ve been able to join a series of advocacy committees, meet other volunteers who share commitments, and listen to the stories told by both those represented by the advocacy campaign and those who run the campaign. During these interactions, I’ve had to learn to negotiate my positionality as rhetorician-advocate by listening to stories, finding slippages, and building trust in order to surface moments of misrepresentation with RESOLVE. Such interactions, though, illustrate what being a rhetorical mediator in community advocacy—embracing relationality—looks like in practice. For sure, moments can be wearisome, wanting to end what seems to be a grueling project where little change happens. But, by trusting in time, micro moments of intervention have emerged, such as my participation on a steering committee working on infertility-related advocacy efforts in Wisconsin (WI).

Without my prior relationships, I would not be in a position to contribute to the advocacy objectives the WI-focused campaign is currently weighing. I use my dual positionality here to work in solidarity with advocacy initiatives that seek to do good but need rhetorical training to aid in that work. By embracing relationality in advocacy work, we can shift prior rhetorical focus on critique toward community and coalition building. And, in doing so, we may situate rhetorical scholarship toward practices that actively embrace an ethics of care—not just for our research participants but toward practices that care for greater social change.

Works Cited

Cushman, Ellen, et al. “Decolonizing Projects: Creating Pluriversal Possibilities in Rhetoric.” Rhetoric Review, vol. 38, no. 1, 2019, pp. 1-22.

Dubriwny, Tasha N. The Vulnerable Empowered Woman: Feminism, Postfeminism, and Women’s Health. Rutgers UP, 2012.

Gagnon, John. “How Cultural Rhetorics Can Change the Conversation: Towards New Communication Spaces to Address Human Trafficking.” Poroi: An Interdisciplinary Journal of Rhetorical Analysis & Invention, vol. 12, no. 2, 2017.

Lindquist, Julie. “Time to Grow Them: Practicing Slow Research in a Fast Field.” JAC, 2012, pp. 645-66.

Maung, Hane Htut. “Is Infertility a Disease and Does It Matter?.” Bioethics, vol. 33, no.1, 2019, pp. 43-53.

Molloy, Cathryn. Rhetorical Ethos in Health and Medicine: Patient Credibility, Stigma, and Misdiagnosis. Routledge, 2019.

—, et al. “A Dialogue on Possibilities for Embodied Methodologies in the Rhetoric of Health and Medicine.” Rhetoric of Health & Medicine, vol. 1, no.3-4, 2018, pp. 349-71.

Mukavetz, Andrea M. Riley. “Towards a Cultural Rhetorics Methodology: Making Research Matter with Multi-generational Women from the Little Traverse Bay Band.” Rhetoric, Professional Communication, and Globalization, vol. 5, no. 1, 2014, pp. 108-25.

Novotny, Maria and Dawn Opel. “Situating Care as Feminist Rhetorical Action in Two Community-Engaged Health Projects.” Peitho, vol. 22, no. 1, 2019.

— and John Gagnon. “Research as Care: A Shared Ownership Approach to Rhetorical Research in Trauma Communities.” Reflections: Public Rhetoric, Civic Writing and Service Learning, vol. 18, no.1, 2018.

Raymond, Janice G. Women as Wombs: Reproductive Technologies and the Battle over Women’s Freedom. Spinifex, 1995.

RESOLVE: The National Infertility Association. Access to Care. Resolve, 2018, resolve.org/access-to-care.

Rowland, Robyn. Living Laboratories: Women and Reproductive Technologies. Indiana UP, 1992.

Sandelowski, Margarete, and Sheryl De Lacey. “The Use of a ‘Disease.'” Infertility as a Rhetorical Vehicle, 2002, pp. 33-51.

Wilson, Shawn. Research is Ceremony: Indigenous Research Methods, Nova Scotia: Fernwood, 2008.

Woollett, Anne. “VI. Infertility: From Inside/Out ‘to Outside/In.'” Feminism & Psychology, vol. 6, no. 1, 1996, pp. 74-78.

COVER IMAGE CREDIT: @resolveorg. “What does access to care mean to RESOLVE and what are we doing to make a change: goo.gl/vN7He9.” Twitter, 15 Sept. 2017, https://twitter.com/resolveorg.

KEYWORDS: health advocacy, cultural rhetorics, infertility, relationality, access to care