Feature: The ART of Infertility: A Community Project Reimagining Reproduction Advocacy

by Maria Novotny, PhD

The Centers for Disease Control and Prevention reports that 1 in 8 couples in the U.S. will receive an infertility diagnosis, impacting an estimated 12% of women who are of reproductive age (15-44 years old) (“Facts About Infertility,” 2015). Of this, it is estimated that one-third of infertility cases are the result of male reproductive issues, one-third a result of female reproductive issues, and one-third either a combination of both sexes or unexplained (“How Common is Male Infertility, and What are Its Causes?,” 2016). Through advancements in reproductive technologies, options for treating impairments causing infertility as well as new developments in assisted reproductive technologies (ART) have helped patients successfully create families.

Nonetheless, as fertility treatments develop and become more advanced, how patients afford these treatments and who has access has not undergone much growth. Currently, only 16 states in the U.S. mandate full or partial insurance coverage of fertility-related treatment (“Infertility Coverage by State,” 2018). These limited options to accessibility and affordability are important, especially as The Journal of the American Medical Association (JAMA) reported in 2015 that two-thirds of patients must undergo six rounds of in vitro fertilization (IVF) before achieving a successful outcome, which they define as giving birth to a living infant. Such a finding reveals the extreme costs of fertility treatment -— financial, emotional, and physical. For example, one round of of IVF (including medications and the procedure) costs on average nearly $20,000. Multiply that by the JAMA’s findings and that total cost to build a family accumulates to over $100,000. Additionally, such financial costs can enhance already present mental and emotional stress of fertility procedures (Gana & Jakubowska, 2016; Greil et al., 2010; Jaffe & Diamond, 2011).

While financial and emotional strains are often correlated with fertility treatments, discussions of access to fertility care must also be understood by examining who has access. For example, a National Survey of Family Growth from 2006 to 2010 reported that married black women are nearly twice as likely to be diagnosed with infertility than married white women. Yet, women of color frequently do not seek treatment. According to data from the Department of Health and Human Services and from the National Center for Health Statistics, part of the Centers for Disease Control and Prevention, fifteen percent of white women ages 25 to 44 in the United States have sought medical help to get pregnant, compared to 7.6 percent of Hispanic women and 8 percent of black women. These studies help emphasize that access to care remains not only a financial barrier but is a social justice health issue connected to particular racial demographics.  

Sociocultural Silencing & Invisibility of Infertility

The issues described above which concern access to fertility care, however, remain absent in public discourse. Much of this is the result of a cultural silencing around infertility and similar forms of reproductive loss, such as miscarriages and stillbirths. Rather than normalize these experiences of loss, sociocultural practices continue to confine these discussions to the hospital room and/or private home.

The idea that infertility is a rhetorical and physical act that should remain silent or limited to private conversations within the domestic or medical sphere can be traced to historical notions of propriety and fertility. For example, Robin Jensen (2015) notes that nineteenth-century notions of fertility were rooted in medical models of care that viewed the reproductive aspects of a woman’s body as machine-like “parts” that needed to be “fixed” in order to operate (Jensen, p. 27-36). This approach situated the reproductive features of a woman’s body in two distinct categories: If the female reproductive system were “broken,” (i.e., infertile) then discourses around the body should be limited to the home or medical sphere until the situation could be remedied (i.e., a woman became pregnant). By contrast, evidence that a woman’s reproductive system was “working” (i.e., pregnancy) shifted rhetorical conversations around reproduction from the silos of the domestic and medical realms to the public sphere, where individuals could openly disclose and celebrate a woman for her fertility.

Jensen’s work offers a historical perspective on infertility and how it is rhetorically constructed as a private matter that should be quietly dealt with — either within the home or a medical facility. However, as Jensen notes, “it is difficult not to draw parallels between these discourses of the past and discourses of the present day” (p. 42). In other words, the rhetorical machinations of the past that celebrate pregnancy and closet infertility are very much present today.

Similarly, cultural rhetorician Kristin Arola (2011) in her reflective video essay “Rhetoric, Christmas cards, and Infertility” suggests that discourses of infertility are publicly silenced and circulate almost exclusively within the private sphere. She contends that, unlike stories of fertility, narratives of infertility “remain silent” and are removed from our public “life narrative” because “we are not comfortable with infertility” (min 4:00-4:49). Nonetheless, for the nearly 7.5 million women who rely upon fertility services to build their families, experiences of reproductive loss and questions of self-identity become deeply woven into their life narrative. Infertility becomes an embodied identity that is all to often under-recognized and misunderstood by more dominant sociocultural narratives that presume the female body as naturally a fertile body. Such a presumption, however, is simply false.

Given how predominant experiences of infertility and reproductive loss are in our society, how may we begin to disrupt its cultural silencing?

One answer: art.

The ART of Infertility is a traveling art exhibit and oral history project portraying intimate moments of grief that have led fertility patients to create. The exhibit reveals the often unseen and everyday encounters of infertility told from the perspectives of women and men who have suddenly found themselves confronting unanticipated paths of family-building. For some in the exhibit, infertility is a disease to be conquered, to be beaten. For others, infertility is a social construction that does not define them. Other stories represent more of a liminality, individuals still processing: their diagnosis, their next step of action, their definition of family, and, ultimately happiness. Assembled together, this exhibit represents the spectrums of living with infertility and is a statement on how artistic creation can become a source of comfort when confronted by the body’s unpredictability. Two examples shown below illustrate both the range of experiences, mediums, and embodied translations that occur when making experiences of reproductive loss and infertility visible to others.

dosis_novotny_1tornado

Image 1. “Fertility Tornado” by Kristin Phasavath. Oil on canvas.

The piece above is titled “Fertility Tornado”. Kristin, the artist, describes the piece: “The fertility tornado is an easy place to get sucked into while going through your personal fertility journey. When you walk through the door of a fertility center, it’s about having a baby but when the road gets long and drawn out, it’s about conquering a problem. It’s about beating something. Navigating through this infertility world can leave you feeling like you have truly been drug through a tornado. It’s important to try and keep focused on why you started this journey in the first place.”

dosis_novotny_2left

Image 2. “Left Behind” by Kevin Jordan. Photography.  

The piece above is titled “Left Behind”. Kevin Jordan submitted this piece and describes his photo: “This photo essay features my baby shoes, worn almost 32 years ago. Looking at them & photographing them naturally makes one think into the past and into the future. It has been almost 8 years since my wife and I started our infertility journey. At first, the infertility journey made me feel left behind, it had thrown my wife and I off course like we were wandering two seperate paths, and not together. It took years to get our bearings, find that common path again and turn that narrative upside down. We often find ourselves reflecting on how short life is, especially when unexpected events occur, which has pushed us to live genuinely and authentically. Ironically, now I feel as though we have left others behind; we can only hope to serve as role models who embody how precious life is.”

Art Disrupts Silence, Allows for Reproductive Loss to Be Validated

While recounting experiences of reproductive loss can be difficult to do with words, visual art serves as a method that translates these experiences into embodied representations. This allows both the artist and general public to view and find new perspectives on the challenges of alternative family-building. Feminist artists and art activists have a well-documented and exhibited history of confronting sociocultural attitudes towards motherhood, yet infertility and infertile bodies “remain largely invisible in both artistic practice and academic discourse” (McClure, 2014, p. 253).

Community art organizations that situate their focus around issues of infertility, like The ART of Infertility, assist at poking at the culturally embedded s/m/othering discourse by calling attention to the “misunderstandings of the complex reality of mothering and parenting experiences in all their expressions” (McClure, 2014, p. 253). This is achieved through strategically curated exhibits that assemble together a variety of voices, experiences, and representations of infertility and loss to — when taken in — illustrate the multitude of people touched by loss. Further, public art galleries allow for infertility experiences to be visualized and thus begins to make a sociocultural space for the public to recognize and validate these experiences. Art, I argue then, is one method that responds to the sociocultural silencing of infertility and begins to make visible these experiences so as to evoke greater public awareness surrounding the issues of access to fertility care.


References

Arola, K. L. (2011). Rhetoric, Christmas cards, and infertility: A season of silence. Harlot: A Revealing Look At The Arts Of Persuasion 6 (2011).

Chandra, A., Copen, C. E., & Stephen, E. H. (2014). Infertility service use in the United States: data from the National Survey of Family Growth, 1982-2010.

Facts About Infertility”. (2015, April 15). 

Gana, K., & Jakubowska, S. (2016). Relationship between infertility-related stress and emotional distress and marital satisfaction. Journal of health psychology, 21(6), 1043-1054.

Greil, A. L., Slauson‐Blevins, K., & McQuillan, J. (2010). The experience of infertility: a review of recent literature. Sociology of health & illness, 32(1), 140-162.

How Common is Male Infertility, and What are its Causes?”. (2016, Dec. 1). 

Infertility Coverage by State”. (2018). 

Jaffe, J., & Diamond, M. O. (2011). Reproductive trauma: Psychotherapy with infertility and pregnancy loss clients. American Psychological Association.

Jensen, R. (2015). From barren to sterile: The evolution of a mixed metaphor. Rhetoric Society Quarterly, 45(1), 25-46.

Lepkowski, J. M., Mosher, W. D., Davis, K. E., Groves, R. M., & Van, J. H. (2010). The 2006-2010 National Survey of Family Growth: sample design and analysis of a continuous survey. Vital and health statistics. Series 2, Data evaluation and methods research, (150), 1-36.

McClure, M. (2014). s/m/othering. Studies in Art Education, 55(3), 253-257.

Smith, A. D., Tilling, K., Nelson, S. M., & Lawlor, D. A. (2015). Live-birth rate associated with repeat in vitro fertilization treatment cycles. Jama, 314(24), 2654-2662.

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