Toward a Material Account of Babyloss Narratives: Authorship

TOWARD A MATERIAL ACCOUNT OF BABYLOSS NARRATIVES: AUTHORSHIP,

IDENTIFIABILITY, AND EMBEDDEDNESS IN COLLECTIVE STORYTELLING

by Janel C. Atlas

A dissertation submitted to the Faculty of the University of Delaware in partial fulfillment of the requirements for the degree of Doctor of Philosophy in English

Summer 2020

TOWARD A MATERIAL ACCOUNT OF BABYLOSS NARRATIVES: AUTHORSHIP,

IDENTIFIABILITY, AND EMBEDDEDNESS IN COLLECTIVE STORYTELLING

by Janel Atlas

Approved: ______John Ernest, Ph.D. Chair of the Department of English

Approved: ______John Pelesko, Ph.D. Dean of the College of Arts and Sciences

Approved: ______Douglas J. Doren, Ph.D. Interim Vice Provost for Graduate and Professional Education and Dean of the Graduate College

I certify that I have read this dissertation and that in my opinion it meets the academic and professional standard required by the University as a dissertation for the degree of Doctor of Philosophy.

Signed: ______Stephanie Kerschbaum, Ph.D. Professor in charge of dissertation

Signed:______Melissa Ianetta, Ph.D. Member of dissertation committee

Signed:______Sean Zdenek, Ph.D. Member of dissertation committee

Signed: ______Jessica Restaino, Ph.D. Member of dissertation committee

ACKNOWLEDGEMENTS

I would like to express my deepest appreciation to Stephanie Kerschbaum, who not only chaired my dissertation committee but also mentored me my very first semester of graduate school and taught a course on narrative and disability studies that opened a new way of looking at things to me. I am also deeply indebted to Melissa Ianetta, who I had the privilege of working for in the University of Delaware Writing Centers and also under her editorship on College

English. I would also like to extend my gratitude to the other members of my committee, Sean

Zdenek and Jessica Restaino. Their patience, support, and expertise helped make it possible for me to complete my dissertation; they both asked productive, engaged questions that forwarded my thinking about babyloss stories. I appreciate the support, guidance, and scholarly wisdom of

Joe Harris and Joan DelFatorre, both of whom generously agreed to do independent study projects with me that gave me the space earlier on in my Masters and PhD coursework to lay the groundwork for this project.

I cannot express enough thanks to Caitlin Larracey, my colleague who started graduate school with me and over that time has become a friend who I can turn to for personal, professional, and writing advice. +++, for always. I also appreciate Carolyne King for always being alongside me (or a few steps ahead) and Tiffany Goldy Brake for caring and listening and being a driven and brilliant woman.

Long before I studied women’s stories about their pregnancy losses, I collected a group of these stories and edited them in They Were Still Born: Personal Stories about Stillbirth. To the contributors to that book who entrusted me with their babies’ stories and with their words, I owe a debt of gratitude. I had no idea, when I solicited those essays, that the privilege of working with them would culminate in this dissertation. I also want to thank my friend Vicki Culling for facilitating my connections in the New Zealand babyloss community, as well as the chairs of the

New Zealand Sands Convention for inviting me to give a keynote address in 2019, which provided the opportunity to speak to bereaved parents and also health and caring professionals about the importance and impact of babyloss storytelling. That keynote planted seeds for the concluding chapter of this dissertation.

I also extend my thanks to too many loved ones to name who asked interested questions and gave affirmations when I felt tired or discouraged by the task at hand. Some of them provided quiet places to write, use of their printers or charger cables when mine were defunct, hugs, encouraging emails, and listening ears when I needed to talk through part of my argument.

You know who you are; thank you and I love you. And last but not least, so much love and gratitude from my heart to James and to our three living children for understanding why the kitchen table was often covered with books about dead babies. I cherish the love and encouragement and patience you gave me as I completed this study.

TABLE OF CONTENTS

LIST OF TABLES…………………………………………………………………….....vii LIST OF FIGURES……………………………………………………………………..viii ABSTRACT……………………………………………………………………………...ix

Chapter

1 HOW BABYLOSS MATTERS…………………………………………………...1

REFERENCES…………………………………………………………………….26

2 WRITING IN THE BODY………………………………………………….…….30

3 COAXING, CO-TELLING, AND EMBEDDING BABYLOSS STORIES: PRINT

TEXTS ABOUT MISCARRIAGE AND STILLBIRTH.……...………………....37

REFERENCES……………………………………………………………………76

4 POST-EPISTEMIC NOSTALGIA…………………………………………….….81

5 INDIVIDUAL LOSS NARRATIVES, COMMUNAL LOSS NARRATIVES,

AND COUNTERING THE REALNESS PROBLEM ONLINE……...…...……..84

REFERENCES……………………………………………………………………124

6 TELLING A STORY OF STILLBIRTH: ACCEPTING THE

LIMITS OF NARRATIVE………………………………………………..………132

7 “PERFECTLY HEALTHY, JUST DEAD”: DISABILITY AND ABLEISM IN

BABYLOSS STORIES……………………………………………………………143

REFERENCES……………………………………………………………………189

8 WHAT NOW? IMPLICATIONS FOR BABYLOSS STORYTELLING…...…194

REFERENCES………………………………………………………………….213

REFERENCES…………………………………………………………………………215

LIST OF TABLES

Table 1: The print books in this study…………………………………………...……45

Table 2: Print books in their quadrants………………………………………………..73

Table 3: Keywords in the FOL corpus……………………………………………….170

Table 4: FOL stories using defect* to refer to baby……..…………………………..186

vii

LIST OF FIGURES

Figure 1: Parent stories embedded in Jiménez………………………………………………...56

Figure 2: DeFrain et al.'s parent stories are more discrete…………………………………….57

Figure 3: Davis (2016) sets parents’ words apart with margins and italics…………………... 58

Figure 4: Atlas's collection separates each parent story into its own chapter…………………59

Figure 5: Davis's 2nd edition puts white space around parent words…………………………62

Figure 6: Davis's 3rd edition italicizes parent words, marking them visually………………...63

Figure 7: Davis' third edition includes parent names in the index…………………………….70

Figure 8: Banner at the top of Facesofloss.com……………………………………………...107

Figure 9: Individual post image from Faces of Loss………………………………………... 109

viii

ABSTRACT

This dissertation takes up the rhetorical and social interactions through which stories about pregnancy loss—babyloss—emerge. How are the stories people tell about their miscarriages and stillbirths invited in different situations and then shaped through the relationship with the interlocutors/listeners who are present? There are two main corpora that I take up to examine: print books about pregnancy loss and a public-facing website where women can share their babyloss experiences. I take up E. Ochs and L. Capps’ framework for narrative dimensions of identifiability and embeddedness to consider how co-telling and authorship are instantiated in babyloss storytelling that happens in different spaces, with particular attention to the difficulty babyloss narrators face in talking about a taboo subject. Describing babyloss can be challenging and complex, and people who try to talk about a baby who died before they were born face what anthropologist and feminist researcher L. Layne calls “the realness problem” of pregnancy loss (2003). When they tell a story about their babyloss, a bereaved narrator must, knowingly or unknowingly, position themself in opposition to a popular dominant cultural narrative that pregnancy loss is a minor and short term kind of grief. I argue that the act of telling about a babyloss constitutes a feminist rhetorical practice and that it is eminently social and made to matter through individual and collective portrayals of this kind of loss

Chapter 1

HOW BABYLOSS MATTERS

I unwittingly stepped onto the path to studying babyloss stories and the places where people tell them in February 2006 when my second baby was stillborn at 36 weeks’ gestation. At the time, of course, I was focused simply on surviving my own shock and grief about a totally unexpected end of my pregnancy with no living baby and the physical recovery from delivering her body. But it was not very long after burying Beatrice that I noticed my need to write about what had happened, and along with that how much I craved access to others’ stories. I wanted to read other people’s words about how their pregnancies had ended in miscarriages or stillbirths. I wasn’t particularly interested in medical facts—I wanted stories from others who had “buried a baby and lived to tell the tale” (Atlas 2014).

To find some of these stories of solidarity, I attended a monthly support group at the local hospital, where I listened to other parents talk about their miscarriages and stillbirths. I also joined a pregnancy loss message board online where I could logon any time of day or night to read and comment on posts from other bereaved moms. I poured out my story and my feelings on the pages of a blank journal. But stories cropped up outside of those spaces too, in social situations where I had to tell unsuspecting friends or acquaintances about Beatrice’s death. I quickly discovered that mentioning my baby to

anyone—neighbor, stranger, acquaintance—almost always resulted in the other person telling another story of pregnancy loss, their own or someone close to them. Where had these stories been before my own baby had died? Why had no one told me? Saying anything about my baby being stillborn opened up a whole new world of pregnancy losses. Suddenly it seemed like every woman I knew wanted to tell me about her struggle with infertility, chemical pregnancy, miscarriage, recurrent miscarriages, or stillbirth.

In the days following my baby’s death and birth, I found myself in many social situations in which I had to tell people about why I was no longer pregnant but without a new baby, had to inform the person that my baby was dead. Before my baby was stillborn, I had no general or experiential knowledge about pregnancy and infant loss: the scale, the magnitude of each loss, the frequency, the impact, and the myriad ways in which such an experience could cause existential, spiritual, emotional, and social landslides. Back in early 2006, there were very few published story collections and general media mostly avoided reporting on pregnancy loss research or prevention, although there were pockets of face to face support groups and online message boards. Overall, however, my efforts to find first-person stories about stillbirth were mostly in vain. And so I decided if there were no such book of real people sharing their stories of stillbirth, I would make one.

The collection of essays I edited, They Were Still Born: Personal Stories about Stillbirth

(2010), was a product of my belief that narratives of pregnancy loss should not circulate only in whispered exchanges between women or in hidden-away corners of the internet. As I edited the collection and then gave readings and book talks, I felt gratified that I had played a role in helping to bring pregnancy loss out into the light. I wasn’t aware then, but my collecting, curating, and editing actions made my collection part of an ongoing conversation about

miscarriage and stillbirth that had some of its origins in the 1970s and which continues through the present moment: a surprisingly interdisciplinary contemporary conversation about what pregnancy loss is and how to talk about it that draws on fields as diverse as narrative medicine, feminist rhetoric, thanatology and grief studies, life writing, counseling and mental health, reproductive justice, obstetrics and gynecology, and communication studies.

After my book was published and I have carried on reading stories by others, I continue to be fascinated and moved by the compulsion so many grieving women feel to tell their stories.

My engagement with these stories led me to write this dissertation focused on babyloss narratives. This dissertation project is motivated by research questions aimed at understanding the social and rhetorical contexts in which babyloss individuals talk about and write about their babies who died before birth. In considering the storytelling contexts, we can learn more about how communal narrative practices develop and change over time, enabling different kinds of storytelling and levels of individual authority on the part of the narrators. I also situate myself as a feminist researcher, whereby my own lived experiences and subjectivities are foregrounded as part of my project, not set aside as external or superfluous to this research. Over the years since my own experience of pregnancy loss, I have not grown tired of reading, writing about, and researching women’s stories about their dead babies. I have not continued with this research because I’m stuck in grief or because I can’t let go of my daughter. Instead, what started as a desire to share my own story and read the stories of others has evolved into a conviction that these stories are something important, that continuing to open up this conversation about grief and loss of wanted pregnancies has implications not just for bereaved individuals and their families, but for scholars in a variety of fields, including rhetoric, narrative medicine, and

psychology. Outside of academe, healthcare practitioners will find useful insights for working with and supporting patients.

My edited collection, They Were Still Born, epitomizes elements of the topics that I will unpack in the next four chapters of this dissertation. The book was my attempt to help fill a gap in popular literature about pregnancy and pregnancy loss, as there was a pronounced absence of parent voices in existing texts. When I saw a lacuna in the current popular literature presenting parents’ stories, I wanted to help bring some new stories out that could speak into that gap. There were books written by authors who included quotes from bereaved parents, but those were frequently decontextualized and anonymized, a process which raises questions about interviewing and reporting stories elicited in research interviews (Chapter 3). My book also includes several chapters offering ideas to readers for how they can make meaning and remember their own babies’ lives, parent their memories, over a lifetime. This move was part of an effort to move away from telling bereaved people to just ‘get over’ their babies’ deaths and to instead normalize the idea that what has been lost is worthy of being mourned and remembered, perhaps for a lifetime (Chapter 5). The impulse to tell a story about enduring a wanted pregnancy ending without a baby is one that many people have felt, but this particular historic moment, at the start of the 21st century, people have various means to do so, including online. And yet even as I told my own story and spoke publically about my daughter’s death, there were aspects of what had happened that I suppressed and that I did not realize I was neglecting. I only discovered the ways that ableism influenced my narrative and through that the meaning I made of my baby’s life (Chapter 7) when I took a course in disability and narrative a decade after my daughter’s death.

Looking at Miscarriage and Stillbirth through a Reproductive Justice Framework

I’ve traced the trajectory of my personal and publication experiences, but this topic is also timely in this particular cultural moment. Questions I take up in this dissertation intersect with ongoing conversations about women’s embodied knowledges and how those knowledges are created, negotiated with more widely recognized forms of (medical) knowledge, circulated, and doing cultural work. While the focus of the stories I take up in this project is the topic of babyloss, the social and rhetorical encounters in which they are told and how they become texts parallel the process undergone by other kinds of stories. Individual women who have tried to talk about their experiences of sexual assault, infertility, abortion, traumas of war and violence, and coming out have encountered numerous barriers to having their stories heard and witnessed. In addition, it is vital to point out that not all people’s stories are listened to with the same respect or acceptance; as is reinforced though scholarship about critical race theory, white people are often taken as the central or unstated norm.

The topic of babyloss falls under the broader subject of reproductive justice, a framework for enacting social justice as it pertains to bodily autonomy, reproduction, sexual expression, parenting, and a wide and diverse range of related issues. The idea of reproductive justice was started by women of color as a response to the ways that discourse and political action/advocacy in the feminist movement of the 1970s and 1980s was fixated on reproductive choice and obsessed with the pro-choice / anti-abortion debates, thereby reinforcing white feminists’ concerns to the detriment of non-white people’s concerns. The founders of SisterSong Women of

Color Reproductive Justice Collective (1997) argued that making abortion and reproductive

“choice” the centerpiece of debate and policy neglects the intersectional and social justice aspects of reproduction. In other words, individual choices a person can make to enact their

reproductive wishes is only as “capacious and empowering as the resources any woman can turn to in her community” (Ross and Solinger, p. 16). Reproductive justice is about more than access to abortion, although that is one part of it. Attending to the ways in which race, class, disability, gender, immigration status, and other social markers have always been implicated in reproduction and rhetoric about who has autonomy or not over their bodies, a reproductive justice framework asserts that reproductive health care is a human right and aims to highlight and change injustices that disproportionally hurt people of color, people with disabilities, people who are genderqueer, people of lower socioeconomic status, and other minority identities. In doing so, a reproductive justice framework centralizes minority individuals and communities.

The three tenets of reproductive justice all relate to my research with narratives about pregnancy losses: the human right to not have a child; the human right to have a child; and the human right to parent children in safe and healthy environments (Ross and Solinger, p. 169). As those tenets demonstrate, reproduction is not an individual choice unimpeded or unsupported by social, cultural, financial, racial, legal, and other systems. Motherhood is “not an isolated, individual experience. Motherhood is deeply politicized, both as a means to control women and a means by which women seek to gain control over their lives” (Ross and Solinger, p. 168). In particular, reproductive justice advocates point out that some women’s ability to conceive, bear, and raise children is supported by the state in pro-natalist measures: white, middle-class abled women are promoted as ideal mothers and the US government has always sought an increase in this demographic (Ross and Solinger, p. 19). Policy and provision of health care has and continues to “ennoble” “free white women,” demarcating the white mother as the “fundamental creative symbol of the white nation” (Ross and Solinger, p. 23). In contrast, anti-natalist policies are enacted to undermine and curtail non-white, indigenous, black, lower-income, trans, and

other marginalized people from procreating. These differences in women’s reproductive choices

(to have or not have a baby and how to raise that baby) vary across different intersectional identities, particularly racial ones, is the central concern of a reproductive justice approach.

My identity as a bereaved babyloss mother informs my positionality in this research, and

I am also a middle-class white woman. My personal experience of the phenomenon I study helps me to see and ask questions that might not present themselves to non-bereaved scholars.

Simultaneously my identity as a white, middle-class, cis woman means that in many important ways I have a great deal of privilege as a bereaved parent. As reproductive justice advocates argue compellingly, race must be a central consideration in understanding and rectifying reproductive injustices, so my whiteness has, to varying degrees at different times, made it hard for me to see the whiteness of many of the spaces in which babyloss narratives emerge and circulate and to make whiteness an active part of my analysis of how pregnancy loss is narrated.

In listening to the words and wisdom of reproductive justice thinkers who are centering people of color’s voices in conversations about reproduction has helped me see some important things about whiteness and babyloss narratives. Much of the data in this dissertation looks at stories that do not explicitly raise race as a topic and some of them are hard to read with attention to racial differences or injustices; that near silence about race matters in how we make sense of these stories and the lived experiences they represent.

“Babyloss” versus “Pregnancy Loss”

Having defined reproductive justice and highlighted its core tenets, I now turn to a second term, babyloss, that is integral to this project. Like the questions we can ask by taking up

the considerations of reproductive justice (as opposed to reproductive freedom or reproductive rights), we can ask different questions about pregnancy loss if instead of calling it that, we employ “babyloss.” Like reproductive justice, babyloss is a political term, by which I mean those who use it intervene in existing power structures and public discussions about an issue. As a term, babyloss amplifies the intention and autonomy of an individual human being who determines that they would like to become a parent. Employing the framework of reproductive justice, this decision to have a child is a human right and each person should have the autonomy and control to undertake that project. In the case of conceiving and gestating a pregnancy, then, a person who is pregnant and for whom that pregnancy is wanted, the intention anticipates a live baby. When that pregnancy ends in miscarriage or stillbirth, calling it a “babyloss” acknowledges and affirms this intention. It centers the desire and will of the person or people who took reproductive action with a desired outcome by not referring to a “pregnancy” that was lost but to the anticipated result of that reproductive action: a baby.

Therefore, throughout this dissertation I use the term “babyloss” even as I recognize that much of the scholarly and medical literature about miscarriage and stillbirth uses “pregnancy loss.” In naming something we must consider what kinds of thinking and debating those names allow us to do. Medical and popular terms privilege certain ways of understanding what it is like to have a pregnancy end without a living baby, and these words only incompletely account for the complexity of that experience. For example, the verbs “to miscarry” and “to have a stillbirth” both foreground the woman. To call a pregnancy loss before 20 weeks a “miscarriage” makes it sound like something was mislaid or went awry due to some kind of failing or accident. In the

United States1 the term for a pregnancy loss occurring after 20 weeks gestation is a stillbirth, a word that acknowledges the process as a “birth” but differentiates it from a “live birth.”

Miscarriage and stillbirth are often lumped together under the umbrella term, “pregnancy loss.”

Other terminology, such as that used in medical discourse, can feel alienating to many women because of how clinically descriptive the words are. For instance, “product of conception,” “fetal tissue,” “zygote,” “embryo,” “fetus,” “spontaneous abortion,” “missed miscarriage,” and “late term fetal demise” can feel detached, dismissive, or minimizing (Chalmers 1992; Jonas-Simpson

& McMahon 2005; Due et al. 2018; Jutel 2006). Many of the options for what language to use when talking about the lived experiences of pregnancy loss frame it through a diagnostic perspective or through popular understandings that view pregnancy as almost always following a chronological timeline from conception to safe delivery.

Yet neither of these approaches—medical or popular—account for the psycho-social meanings of pregnancy, which involve forces and narratives far afield from the mother and the biological process of pregnancy; indeed, as reproductive justice advocates point out, motherhood and pregnancy are not “isolated, individual experience[s]… [they are] deeply politicized, both as a means to control women and a means by which women seek to gain control over their lives”

(Ross and Solinger, p. 168). One of the dominant ways in which social and cultural constructions of pregnancy are largely made is through the medicalization of pregnancy, as more than any time in history, expectant parents can have a “familiarity with fetal life through obstetric ultrasound,” a fact which has “transformed stillborn children into participating members of their families long before birth” (Sanger, p. 269). Outside of medical settings, expectant

1 There is no standard worldwide delineation between miscarriage and stillbirth, and the way they are reported and counted varies state by state and country by country. 9

women receive advice from non-medical sources about cultivating healthy pregnancies (Seigel

2013); capitalist messages about preparing for the impending arrival by buying consumer goods ahead of time (Layne 2003); and pervasive communications about their maternal identities long before their babies’ births. The combination of these social forces constructs both the idea of a pregnancy as leading inexorably to a baby and to motherhood for the woman. Yet when a pregnancy ends in loss, these social scripts are often revoked. The baby images that a pregnant woman was encouraged to associate with her pregnancy (on advertisements, in marketing materials, in the OB/gyn office, etc.) suddenly are not for her, as the baby she had anticipated no longer will be born. In a study about women’s phenomenological experiences following stillbirth, thanatologist J. Cacciatore found that many grieving women encounter others’ view that their loss is a “reproductive loss and not the death of a child” (2010, p. 144, original emphasis). By this assessment, people may refuse to consider prenatal loss as worthy of mourning the way that mourning is supported for an individual who dies after birth; people “may feel that since the parents did not experience the child outside the mother’s body, there was minimal attachment or love” (Cacciatore 2010, p. 144). Some mothers are told by health professionals that “they lost a pregnancy, not a baby, suggesting that a pregnancy is an object void of humanness and void of a sound rationale to grieve the loss. Of course most women do not experience pregnancy as an object” (Jonas-Simpson & McMahon 2005, p. 124). For these reasons, I adopt “babyloss” instead of “pregnancy loss” for this project; the term babyloss frames what has happened and what is being grieved as something other than a “reproductive loss.”

Instead, many bereaved parents feel the loss of a “child in mind,” a concept suggested by psychotherapist J. Bueno (2019).

A “child in mind” is the psychological existence of a baby who is coming into being over the course of a pregnancy, and in instances of miscarriage and stillbirth, that child in mind dies.

As Bueno writes,

Miscarriage often involves the loss of a unique relationship with a baby—a relationship

that may have begun long before the baby was conceived, especially for those who have

yearned for a baby for years and may have struggled to get pregnant. But the notion of a

relationship existing with our unborn—however developed in the womb he or she may

be—took a pitifully long while to grab the attention of medical and psychological

research and can still be a fragile one for many. And if this bond isn’t fully understood,

the grief flowing from its dissipation when a pregnancy ends has little chance of a healthy

expression. (2019, p. 6)

In choosing to use “babyloss” instead of perinatal loss or pregnancy loss, then, I align my terminology with bereaved parents who invented the term to more adequately describe what they feel they have endured. For grieving parents, they do not see what they have lost as a pregnancy; they see themselves as having been awaiting the arrival of a baby and with that the attendant and into-the-future existence of that new person. To call what has happened a “pregnancy loss” is to acknowledge the end of a developmental process but it also stops short of recognizing the death of the expected result of the process. Seeing pregnancies as teleological—a means to an end or outcome—is problematic, and later in this project I will extend the thinking of philosopher J.

Scuro, who, in The Pregnancy =/= Childbearing Project, writes to challenge

childbearing teleology: the scripts and rituals that underwrite sociopolitical, gendered,

and embodied expectations about pregnancy while overwriting and erasing the

existentialia implied by the pregnant body. This teleology is exercised through a medical

and cultural complex of guidance and instruction, asserting itself as what “everyone

always” expects when the pregnant body “appears.” There is very little meaning or ritual

granted to the experience of miscarriage, except in the negation—as a “failed pregnancy.”

(2017, p. 189)

But the general public still largely views pregnancy as a means to the end of a new baby, and this assumption still underpins most babyloss stories I have studied.

“Babyloss” encapsulates the claim that many of babyloss parents make in writing personal stories, in that the portrayal of what was lost is not merely a pregnancy, but is actually the loss of what would have been, or, put another way, what was already coming to be. Using

“babyloss” gestures toward the future-oriented aspect of what pregnancy loss means to those who grapple with it. Had the wanted pregnancy continued uninterrupted, the expected result would have been an infant. Babyloss as a descriptor of bereavement does not, then, necessitate that the actual pregnancy be at a certain developmental point. An ectopic pregnancy, which is a product of conception that never has any chance of developing into a full term infant because implantation occurs outside of the uterus, can still be considered a type of babyloss. At the risk of making a circular argument, I assert that babyloss is babyloss because of the desire and intent of the mother: if one wants to be pregnant and then that pregnancy ends without a baby, that is

“babyloss.” In contrast, a woman who chooses to end an unwanted pregnancy with an abortion does not endure pregnancy loss. Whatever that lived experience is like, whatever feelings come up and however the narrator tells her story, that was not “babyloss,” because there was no striving for a baby.

I have grappled with the decision of whether to use the term “babyloss” because using it may alienate some readers for whom the term implies that the unborn fetus is a ‘baby.’ J. Bueno

acknowledges the tension of talking about a miscarriage as the loss of a baby, writing, “this could sit uncomfortably with the pro-choice arguments about abortion” (p. 3) because referring to an embryo or fetus as a baby could muddy the question of when life begins and thus the morality of abortion. Ultimately, she asserts “‘personhood’ (or ‘babyhood’) [is] a notion that emerges from cultural, and individual, constructions” (Bueno, 2019, p. 3). Bueno points out that some women who have miscarriages do not experience heartache and “don’t use the word ‘baby’ to describe what they lost” (p. 5), but that the “English language shackles us when it comes to writing or talking about miscarriage” (p. 5), Thankfully there are many more options for what language can better describe the experiences of pregnancy loss, as researchers interested in medical rhetoric and communication have found; recent studies about the language and metaphors used by bereaved parents can help expand the options for narrating and making sense of a bond with the baby “after a baby’s death” so that the mother can “connect with the meaning that the baby holds for her in the now and in the not-yet,” as C. Jonas-Simpson and E. McMahon suggest (2005, p. 128). Like Bueno, who decides to use “baby” throughout The Brink of Being because “it is the one [she] most often hear[s] from the bereaved” (p. 5), I also use “baby” and

“babyloss” because the women whose stories I listen to and analyze in this project most commonly describe what they have lost as their “babies.”

To do so does not have to undermine reproductive justice or need to ascribe personhood to fetuses, and negating a woman’s self-determined sense of what it is that she is grieving is in part a failing of (white) feminist ideology. An “understandable, but nonetheless dishonest” limiting focus on the right to access birth control and abortion has, as S. M. Park puts it,

“reduced the relationship of a pregnant woman to the life growing inside of her to the relationship between a host and a parasite” (2013, p. 45). This means of arguing for a woman’s

right to choose is shortsighted because not all women see “pregnancy and birth giving as either detrimental or inconsequential,” argues Park. As I already outlined in describing how a reproductive framework informs my treatment of babyloss as a curtailing of personal bodily autonomy, a focus on preventing or ending pregnancies sometimes happens at the expense of the equally important human right to choose to have a baby. A damaging side effect of denigrating pregnancy and motherhood is that some feminists “have rendered invisible, inaudible, and inexplicable the emotional, existential, and phenomenological landscape of women” who want to become mothers and who experience some kind of separation “from their embryos, fetuses, and children through infertility, abortion, miscarriage, stillbirths, and voluntary or involuntary relinquishment of children they have borne” (Park 2013, p.45). Park’s point is well-taken in considering that reproductive justice includes the autonomy to embark on pregnancy and to have medical, societal, and financial support to carry that pregnancy to term; I see reproductive justice as also validating the loss if/when that pregnancy fails, for the family’s needs for support to be unencumbered and unapologetic. In this rebuke, Park points to some of the unintended consequences of dismissing the desires and the (sometimes) attendant grief that follows when a wanted pregnancy fails, which curtails the supported expression of a wider range of women’s feelings about pregnancy outcomes. Park’s critique helps me, as a feminist pro-choice researcher, embrace the term “babyloss” even as I acknowledge its potentially fraught connotations.

It is important to acknowledge, too, that members of the pro-life movement have tried to interpret and frame individual pregnancy losses to argue against abortion rights. For example, in

2019, Meghan McCain wrote an op-ed piece in the New York Times in which she revealed a recent miscarriage. She extrapolated from her miscarriage to make political points that clearly

signaled an anti-abortion stance. Bereaved parents and abortion-rights activists have also clashed about whether states should issue “birth certificates resulting in stillbirth” documents (Sanger

2011). Organizations raising awareness and offering support to bereaved families argue that formal acknowledgement of stillbirths could help validate and raise the visibility of babyloss, while pro-choice groups see this as a means of further eroding a woman’s right to end a pregnancy by ascribing personhood before birth.

Ultimately, terming miscarriages and stillbirths “babyloss experiences” as I chose to do is aimed at listening to, valuing, and ultimately validating the lived experiences of women whose pregnancies were desired and which ended in the birth of death instead of in new life. Babyloss is also is a word chosen by the people whose stories I am researching and engaging with most often self-select to describe themselves, so out of deference and respect for them, I follow in using the term. Looking at babyloss in this way means that it is possible to be a pro-choice advocate for whom an embryo at 10 weeks’ gestation is not a “baby” in a literal sense, but to still recognize the phenomenological and experiential sense that a woman makes when grieving her wanted pregnancy.

Social Storytelling about Babyloss

This dissertation is about the social interactions through which babyloss stories emerge. It takes up narratives about women’s experiences of miscarriage and stillbirth, but the questions I ask are about the ways in which the resulting stories are invited and shaped in relationship with the interlocutors and the rhetorical situations in which they are told. I examine two distinct storytelling contexts and theorize the social interactions that then impact the stories that are told,

which both enable and constrain babyloss narrators. Babyloss, while quite common, has not received much scholarly attention. Yet, the storytelling that emerges around babyloss provides fertile grounds for thinking about social storying, narrative emergence in analog conversations and digital collections, and can enable examination of unquestioned cultural assumptions that underpin these efforts at surfacing previously unheard stories.

Following on from the important work on small stories (Georgakopoulou 2006) and everyday storytelling (Ochs & Capps 2004), I hone in on babyloss stories shared across a range of contexts. There are several important and related reasons why this type of storying makes it particularly fruitful for analysis and these reasons inform my methodology. I draw on work done by narrative theorists and scholars of rhetoric in order to consider the ways in which women who have experienced babyloss tell their stories. The human propensity to create order and determine causality and connection among various pieces of information inspires people to tell stories, and they often do so in community. Taking a combined approach of sociology and psychology, E.

Ochs and L. Capps identify key tenets by which to describe, compare, and analyze everyday stories in Living Narrative: Creating Lives in Everyday Storytelling (2004). The five narrative qualities Ochs and Capps identify include "tellership," from one author to collaboration by two or more; "tellability," from high to low; highly "embedded" narratives to detached ones; closed temporal and causal "linearity" to open temporal and causal ordering; and certain, constant

"moral stance," or uncertain, fluid stance (2004, pp. 19-20). Rather than seeing story as a discrete object that can be neatly delineated and within the control of one teller, Ochs and Capps highlight that the spectrum of social interactions that impact how storytelling works and how selves are created and performed through the stories told.

I take up Ochs and Capps’ framework to consider how co-telling and authorship are instantiated in babyloss storytelling that happens in different spaces, with particular attention to the difficulty babyloss narrators face in talking about a taboo subject. Describing babyloss can be challenging and complex, and people who try to talk about a baby who died before they were born face what anthropologist and feminist researcher L. Layne calls “the realness problem” of pregnancy loss (2003, p. 17). Telling a babyloss story breaks a taboo that in turn is about the disruption of an already liminal state, because pregnancy itself is a temporary condition that places woman between two structural states (Layne 2003, p. 59). Layne argues that speaking out about a miscarriage or stillbirth is to ask listeners to confront the inaccuracy of popular cultural narratives of biomedical progress and the contemporary “interdiction on death” (p. 65). Babyloss narratives also challenge the concept of unimpeded linear progress and the safe “course of individual development” (Layne, p. 68). The prevailing belief that babyloss is uncommon and, when it occurs, has only a minor impact on babyloss families does not hold up well under the weight of a compelling babyloss story. When they tell a story about their babyloss, a bereaved narrator must, knowingly or unknowingly, position themself in opposition to these popular dominant cultural narratives and creatively negotiate both with their listeners/audiences and conform to collective generic conventions.

I argue that the act of telling about a babyloss—performed almost entirely by women in spaces like pregnancy loss support groups, in research studies about pregnancy loss experiences, and online in digital archives of babyloss narratives—constitutes a feminist rhetorical practice.

These stories are interesting in and of themselves but also because of the complex collaborative co-telling interactions through which they become entextualized. These stories are collectively told counter-narratives, meaning they are stories that run against the grain of popular narratives

and are told by maternal narrators. Taking an expansive feminist rhetorical perspective on babyloss stories as a genre instead of as individual stories focuses attention on women’s rhetorical actions as a collective. As Carolyn Miller argues in “Genre as Social Action” (1984), genre is a "rhetorical means for mediating private intentions and social exigence; it motivates by connecting the private with the public, the singular with the recurrent" (p. 163). I study the exigence of narrating a story of babyloss with the intended aim of not only shedding more light on under-attended lived experiences of women but also of exploring “the implications of engaging a single, though complex, topic or conceptual category… and applying it to specific examples of rhetorical practices” (p. 40), as K. J. Rawson in “Queering Feminist Rhetorical

Canonization” calls for scholars of rhetoric to do. In reading stories of babyloss and considering the social interactions through which they are enacted, entextualized, and shared, I analyze the collective rhetorical movements of bereaved women who negotiate amongst themselves in community and with the broader world for whom pregnancy loss may not seem “real” (Layne,

2003).

Where do babyloss stories start?

Women’s embodied experiences of pregnancy and delivery have changed significantly over time, with historic improvements in prenatal care, increasing medicalization and monitoring of the pregnant body, and the shift from home to hospital for labor and delivery that occurred in the 20th century (Siegel 2013; Owens 2015). Many feminist historians and scholars interested in medical communication and rhetoric have described the changes, particularly in how pregnancy as a state of being has been biopoliticized (Foucault 1979) and disciplined by (initially male- dominated) medical professionals (Siegel 2013). Pregnancy losses, in these biomedical

paradigms, are seen as failures of the maternal/female body. In medical and popular texts alike, women’s maternal bodies are constructed as naturally nurturing of the nascent new life within, and their actions are proscribed and their womanly virtues reinforced for the productive responsibility they bear as mothers-to-be.

The social and psychological transformation of a woman into a mother happens well before the delivery of a newborn, over the course of 9 months of gestation as well as prior to conception. Pregnant women also are socially escorted across the threshold from woman to mother by many pervasive discursive and social practices, including technologies such as the home pregnancy test, which allows her to ascertain whether she is pregnant less than two weeks after conception. Once a pregnancy is established, progress can be monitored by fetal Doppler and quite importantly, the ultrasound/sonogram, through which the unborn fetus is made visible

(McDermott 2016). These advances in medical technologies over the past fifty years has pushed earlier a woman’s awareness of her pregnancy as well as the medical interventions and monitoring that have become standard in advanced medical settings. However, the earlier monitoring can induce a teleological trajectory wherein the pregnant woman is assured that she is already crossing the identity threshold of motherhood. In addition, there are cultural practices and scripts for prenatal constructions of the expected baby and the expectant mother, including pregnancy announcements (indeed, the early 2000s saw the rise on social media of heavily orchestrated pregnancy announcements), gender reveal parties, and baby showers.

When the expected baby dies before birth, babyloss parents may encounter a dearth of social scripts and therefore the experience can feel isolating and upsetting. For in addition to the sadness about the loss, there are often stigma and social consequences for telling family, friends, employers, and acquaintances about the miscarriage or stillbirth. “While most child deaths are

recognized as tragic, the emotional backlash of stillbirth is generally minimized and negated and is often treated as a non-event,” writes J. Cacciatore (2010, p. 137) in a study of women who had endured stillbirth. Grieving mothers may feel disenfranchised from the social groups in which they belonged before their babylosses, resulting in feeling ostracized and lonely after so recently having been socially constructed as mothers-in-becoming.

Until the mid-1970s or so, women whose pregnancies ended in miscarriage or stillbirth found themselves only able to talk about what that felt like and what it meant in their lives to a select social intimate circle of women—their mothers, sisters, midwife, perhaps a friend or two.

Experiences of miscarriage and stillbirth were mostly narrated in oral networks, away from the public, outside the halls of power, and in informal communities of women. While a miscarriage may seem to be the most personal and private of things, women who miscarry still need to make some kind of sense of what has happened, and talking about what they’ve been through with others is one of the main ways to do so, even when it seems too hard, too painful, too personal, to broach. And yet increasingly, women are insisting that others outside of their families and immediate social circles listen to their experiences and support them in the grief over wanted pregnancies ending without a baby.

In this dissertation I take a historical journey through the socio-rhetorical contexts in which babyloss stories come into textual form, starting with print narratives from interviews through to personal narratives submitted to a digital repository. While my attention in this project does take seriously the content of babyloss stories, the primary findings are related to how the social interaction between listener/audience and storyteller impacts rhetorical moves and shapes the generic conventions of this type of personal narrative.

Babyloss stories begin to emerge (Chapter 3)

In the 1970s and early 1980s, stories of babyloss began to garner some attention from childbirth educators, medical researchers, and sociologists, as well from academic researchers, some of whom had first-hand experience with babyloss. These publications coincided with the growing alternative birth movement in which midwives and childbirth educators promoted natural and home birthing and a countercultural shift for women and their partners to be active, empowered participants throughout pregnancy, labor, and delivery (Kline 2015). In an era when women’s health and reproductive decision-making were pushed front and center with second wave feminism and American cultural debates about the morality of abortion, educational and popular materials about pregnancy experiences became more commonly available. Yet while women-centered information- and narrative-driven materials were becoming more widely available, these early texts either did not include or only glossed over the subject of negative pregnancy outcomes like miscarriage and stillbirth.

It is against this backdrop of women’s empowerment and reproductive freedom that the earliest print accounts about miscarriage and stillbirth were published, in short print texts intended for newly bereaved parents and the medical workers who treat them. The stories about what women remember, what they felt, what they saw and how they continued living after a pregnancy loss at last began to move from private conversations with peers to print texts generated by medical, sociological/anthropological, and academic researchers. Many of these stories were elicited by interviewers or collected from voluntary surveys, collection methods that we know cannot ever possibly be neutral or objective (Brinkmann 2018). The questions an interviewer asks invites some details while discouraging others, and the interpersonal dynamics between interviewer and interviewee can cultivate a storytelling that would be different had there

been less trust (or more), greater comfort (or less), higher levels of vulnerability, ambivalence, or conflicting expressions (or lower). Examining the narrative snippets that are embedded in print texts about babyloss over several decades (1982 – 2016) provides interesting insights into how babyloss mothers told their stories as well as the co-telling that occurs in research interview interactions.

In chapter 3 of this dissertation I examine how these very personal stories come to be recorded and what can we learn about socio-rhetorical contexts for storytelling from these texts.

To do so I consider the books’ paratexts to determine how embedded and identifiable the parent stories are within the text at large. I track a chronological arc of the ways the authors anonymize and incorporate the stories they elicit within their respective books.

Babyloss stories move online

Print stories and pregnancy loss support groups of the 1980s and 1990s laid the groundwork for babyloss stories to move online with the advent of the Internet. In a comprehensive study of pregnancy loss in America, anthropologist Linda Layne (2003) tracks the rise of pregnancy loss as a public concept and suggests that the rise of online support groups will alter babyloss identity performances, as well as offer support for countering the complex social factors that conspire to isolate and minimize those who endure babyloss. In chapter 5, then, I move online to analyze how babyloss storytellers create individual and collective narratives. The website I study here enables the creation of longer-form narratives that, at first glance, may seem less social and interactive than those from the research interview context, but which are part of a broader communal story aimed at creating change.

I focus on a corpus of babyloss narratives drawn from Faces of Loss / Faces of Hope, an online repository for stories about pregnancy loss. I show how the stories, each of which appear to stand alone, are molded and invoked by the stories that already exist on the site and even more potently by the website creator’s manifesto about the purpose of the website. Using corpus linguistics software to read across one hundred of these stories, I show how they collectively work to articulate and perform the realness of miscarriage and stillbirth through languaging loss that shows the wanted baby was a “child in mind” (Bueno 2019).

Babyloss stories as unwittingly ableist

While babyloss narratives unite bereaved storytellers and empower the public performance of grief for miscarried and stillborn babies, there remain aspects of the stories that are untold or elided. In Chapter 7, I bring a critical disability studies lens to problematize what I will argue are the ableist underpinnings of these stories. I read across many narratives and also interrogate the ways that my own lack of awareness about ableism impacted how I tell the story of my baby’s death. As in the earlier chapters, I look at how the situation for talking about babyloss impacts the teller’s decisions. However, here I take up a question about a widespread ideology—ableism—in order to ask why parent narrators use the language they do to describe what happened in their pregnancies and to their babies. I draw on ableist studies to delve into specific words that are dominant in a corpus of babyloss stories online, as well as to draw attention to the absence of specific mentions of disability.

What Now? Implications for Babyloss

In the concluding chapter of this dissertation I highlight some of the key findings drawn from across the storytelling sites I examine: co-told stories within print texts, communal storytelling online, and cultural constraints from ableist ideology on babyloss—in order to suggest some implications for the real world. The focus of my research has honed in on the rhetorical analysis of how these stories come into existence and the ways in which containers that hold them enable and constrain the bereaved narrators’ expressions. Along with that there are some applications of those findings in a variety of spaces, both inside and outside of academia.

The first and most obvious people who may be interested in babyloss stories as texts for gaining information about how to best support families who are going through miscarriage and stillbirth, including how to support them emotionally. While pregnancy and labor and delivery providers such as fertility specialists, obstetricians and gynecologists, midwives, and nurses often work the most closely with women who are experiencing or have gone through babyloss, because of the long-lasting impact of babyloss, medical professionals not working specifically with pregnancy and birth can also benefit from these findings, including general practitioners and other specialists) and medical staff (front desk workers, intake nurses, billing accounts managers, receptionists). In addition, improved knowledge about babyloss outside of medical settings is also imperative for helping grieving families receive the support and validation they may need to process grief in healthy, culturally affirming ways.

Throughout my work for this dissertation I have taken a feminist rhetorical approach, seeing the stories that have come to my attention as an opportunity to think with them, to allow myself to get “caught up in” (Frank 2010) them rather than staying detached and trying to find

verifiable, objective meaning. If we tell ourselves stories in order to live, and the stories that we tell are a way of making life social, then delving deeply into a particular kind of story, told across a variety of contexts, seems like a method for listening in a way that is generative. In this final chapter, I suggest some fruitful questions that still remain for me, that, for all the time and energy

I have devoted to this project, remain tantalizingly unanswered. I hope that the work I have done here and the groundwork I’ve laid with this particular type of personal narrative inspires others interested in storytelling, writing for healing, and communication more generally to find corollaries and applications with other types of difficult-to-tell personal narratives.

Interchapters

Interspersed between each of the more traditional analysis chapters of this dissertation I include an interchapter. Each of these interchapters is a way for me to stage my academic interventions with a reflective framework, in which I embrace the subjective ways that my own identity as a bereaved babyloss mother and writer infuses this project.

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527-556. DOI: https://doi.org/10.1353/bhm.2015.0065

Layne, L. (2003). Motherhood lost: a feminist account of pregnancy loss in America.

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always will. New York Times. https://www.nytimes.com/2019/07/19/opinion/meghan-

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Chapter 2

WRITING IN THE BODY2

When I talk about my research, I gain important insights into other people. I can tell a lot about a person by how they react when I say, “I study women’s stories of pregnancy loss; my project began 13 years ago when my second baby died right before she was born at 36 weeks’ gestation.”

I’ve gleaned these insights in conversations that take place by the buffet table at a cocktail party, on the sideline of a kids’ soccer field, and in the corridor at an academic conference. Sometimes the person gets flustered and crestfallen. They may clam up, muttering something like “sorry for your loss.” On occasion they can’t even manage that and instead change the subject or excuse themselves. Sometimes the interlocutor asks follow up questions, like about what that was like or what her name was. The most common response, though, is a glimmer of recognition; I can see in the person’s eyes that they or someone they know has endured a pregnancy loss. When I mention my own, their mind and mouth are flooded with a similar story. They want to share some of the details of their own babyloss or the loss endured by a sister, mother, grandmother, daughter, or friend. I often hear something like, “I have someone I should connect you with,” or “I have a story you should hear—it relates to your work.”

2 This essay will be published in Our Body of Work, a collection edited by M. Nicolas and A. Sacari (Southern Utah State University Press, forthcoming). 30

It has been fascinating to conduct scholarly research about something that is simultaneously so common—at least 1 in 4 pregnancies ends in miscarriage or stillbirth, with the real percentage likely much higher—and yet still somewhat taboo to bring up in conversation both within and outside of the academy. People often seem to believe that they would be breaking a social code by referring to a dead baby unless someone else raises the subject first.

In these conversations, when I talk about my research into pregnancy loss stories, I splay myself open. I reveal something from my past that is deeply personal and sad, but which I choose to disclose: to look at it, turn it over in my hands, describe the experience publicly, and more importantly, to argue that babyloss is indeed a topic deserving of scholarly attention.

Exposing my own lived experience of stillbirth has been necessary along each step of the journey from bereaved parent to PhD researcher, yet embodied knowledge doesn’t neatly fit into academic discourse. Nor is the evolution of my thinking about this subject easily mapped onto a tidy flowchart or a linear timeline. When I write about babyloss—devastating miscarriages, secondary infertility, babies born too soon and too late—my own or others’, I pay an emotional and physical toll. Each time I plan out the next steps for research, writing, and submitting for publication, I’m forced to concede that my work isn’t circumscribed within a semester plan or neatly slotted into an editorial calendar.

For example, sometimes when I’m reading or annotating a babyloss story I sink down from an analytical headspace and stumble across affective traces of grief in my body. Without my notice (or permission), my shoulders have hunched up around my ears as I’ve read the opening lines, knowing full well where the story of a much-wanted pregnancy will end.

Sometimes I find my heart is clenched, ripples of compassion flowing when I encounter a

particularly eloquent expression of grief. And there have been many instances when I’ve read a passage I’m studying through a scrim of hot tears.

Writing about babyloss and asking critically engaged questions about babyloss stories, for me, necessitates a recursive flow: from self to other; from past to now; from the head to the heart. It’s not enough to inhabit only one of those spaces, because it is actually through the movement across and between, by respecting the imbrication of those two seeming poles of difference, that knowledge from either space can be understood and then communicated.

Feminists have been pointing out this paradigm since the 1980s, including Donna Haraway, who famously wrote that all knowledge is “situated and embodied.” Yet even three decades after

Haraway’s powerful argument, producing academic prose still seems to demand a disembodied or at least super-human ability to think apart from the fleshy affective weight of a physical form.

As within social interactions in which I disclose my daughter’s death, I need to carefully consider the different audiences whom I must persuade of the validity of both my personal grief and professional aptitude to study and understand babyloss narratives. For instance, when I apply for a grant or submit a report about my progress to an institutional committee, I shift from an affective and embodied realm to an intellectual one. Yet I can’t completely eradicate the emotional and embodied aspects of my work from formal discourse settings, because to do so would deny both the genesis of and the continued motivation for my research.

Writing in the academy more generally, and specifically in administrative applications for travel funding, grants, and other business-side committees, demands a privileging of certain kinds of knowledge, or at the very least requires adopting discourse practices that neglect embodiment. In a fellowship proposal with deadlines and operationalized intentions, where can I account for the existence of my body? How can I predict the depleted days, the disrupted sleep,

the stretches of time when my partner’s or my living children’s needs require so much of my time and energy that the thought of reading even a single tragic narrative about someone else’s baby dying makes my head ache?

In performing the roles of researcher, critical thinker, and feminist writer, it doesn’t feel like there’s much room for my body. This is especially ironic because the subject I study places bodies and what happens to them and inside them right at the center. This proscribed duality requires a continual negotiation, a rhetorical savviness that I sometimes find tiresome even as I know it’s necessary. I must ask

Who is my audience?

What do they value?

What kinds of ‘data’ counts as data?

Is it safe to reveal emotional or psychological vulnerability to this person, or should I present a confident and objective self in this space?

The answers to these questions and the pathway I’m continually forging as a scholar and seeker come from both inside and outside of the academy. From inside academia, I’ve been lucky enough to have genuine conversations with advisors, mentors, and colleagues about how they settle into their own research and writing practices with boundaries that acknowledge their physical strengths and frailties. From the outside world, I devour books, articles, and podcasts about emotional intelligence, vulnerability, and humanness. This wisdom reminds me that the motivation for my academic work and the means of conducting it require acceptance of both my body and my mind, and that the risk of doing this work is also its promise.

The compulsion I feel to engage with these stories inspires me to continually invite others to join the conversation, sharing stories that may at first seem isolated or much too private to tell.

Instead of subsuming one under the other, I move along the intersections of knowledges, inviting others to open themselves to grief, knowing, and connection, even as I navigate the blurry lines of my own knowing.

Chapter 3

COAXING, CO-TELLING, AND EMBEDDING BABYLOSS STORIES: PRINT TEXTS

ABOUT MISCARRIAGE AND STILLBIRTH

It is incomprehensible, the extremely personal aftermath of having my child

die inside the only home he has ever known: me. And I can’t just pick up the

pieces. Some are too tiny to find; snippets of my innocence, and the little

things I am missing, like the heavy warmth of a sleeping baby in my arms.

–Davis, Empty Cradle, Broken Heart, 2016, p. 7

We honestly believe that we did not write this book. Rather, it was written by

the 350 mothers and fathers across the United States who have experienced

stillbirth. We simply interviewed people, studied others’ written testimony

regarding the baby’s life and death, organized the responses in a coherent

framework, and added a few words here and there synthesizing ideas.

–DeFrain et al., Stillborn: The Invisible Death, 1986, p. vii

In remembering the baby who died inside of her, the mother in this chapter’s first epigraph offers a public performance of a deeply private grief. She describes the

“incomprehensible” in terms of “pieces” that “are too tiny to find” and put back together, and yet her words paradoxically capture the elusive and “incomprehensible” experience of babyloss even

as she explains that it’s not possible to adequately capture what she is “missing” (Davis 2016, p.

7). Her story, which is actually the story of her multiple pregnancy losses, is entextualized in

Deborah Davis’ bestselling book about miscarriage, stillbirth, and infant death, Empty Cradle,

Broken Heart: Surviving the Death of Your Baby (3rd edition, 2016). Despite the fact that women throughout history have always experienced babyloss, stories like Tanya’s have only relatively recently entered popular public discourse.

Collections like Davis’s Empty Cradle were instrumental to supporting the emergence of what were previously private babyloss stories into public domains. In 1986, the co-authors of

Stillborn: The Invisible Death (1986) collected and curated babyloss stories. In so doing, they opened their acknowledgements with a startling statement declaiming their authorship. In the second epigraph of this chapter, John DeFrain et al. say that their book was written by the

“mothers and fathers across the United States who have experienced a stillbirth” (p. vii) and who contributed their life stories for inclusion in the print text. Indeed, Stillborn contains thousands of narrative snippets quoted directly from bereaved parents whose babies were miscarried or stillborn, organized into themes such as “Why My Baby? Shock, Blame, Guilt, and Hardship;”

“The Autopsy and the Funeral;” “Support Systems: The Circle of Love;” and “The Healing

Process.” The centrality of these thousands of parent voices throughout the book contributes to its portrayal of the material, psychological, emotional, and social impacts of having a baby die before birth. Yet even as those voices come through, and despite DeFrain and his co-authors’ claim of parental authorship, their own roles as elicitors and editors of these stories are elided.

Taken together, DeFrain et al. and Davis preview two important conditions supporting the emergence of babyloss narratives into public discourse between the 1970s and the early 2000s: the question of individual (and collective) authorship as well as how various print texts,

including Empty Cradle and Stillborn, integrate mothers’ babyloss stories into the broader textual whole. In this chapter, then, I ask: how did these very personal stories come to be recorded, and what can we learn about socio-rhetorical contexts for storytelling from these texts?

In what follows, I first briefly describe some of the cultural conditions that led to babyloss narratives’ more widespread circulation in print texts aimed for general audiences beginning in the 1980s. I then introduce the seven books that I carefully analyze in this chapter and describe the analytical approach I took to understanding them as containers for holding and moving these stories. In doing so, I illustrate the narrative dimensions of tellership and embeddedness, which I argue are central to understanding the broader texts’ position toward and framing of the babyloss stories within them. I conclude by explaining the significance of this particular instantiation of babyloss stories in the historical emergence of women’s rhetorical action with pregnancy loss in public spaces.

A Brief History of the Print Emergence of Babyloss Stories

The print textual emergence of personal stories of pregnancy loss occurred in the decade following the Boston Women’s Health Book Collective’s publication of Our Bodies, Ourselves

(1973), a feminist book about women’s health and sexuality that aimed to empower women and unveil the paternalistic nature of contemporary medical practices. Put together by women for women, Our Bodies, Ourselves takes on women’s health topics and frames them through individuals’ embodied experiences and memories, challenging the idea that medical information is held and should be controlled by health professionals rather than the individuals. The authors also asserted that they would engage directly with subjects previously considered “taboo,” such

as abortion. Its publication has been called a founding event of the women’s health movement

(Morgen 2002). The personal experiences of women are quoted throughout Our Bodies,

Ourselves and those stories are seen as political because “by sharing our responses we can develop a base on which to be critical of what the experts tell us” (qtd. in Schnier 1994, p. 352).

Texts like Our Bodies, Ourselves worked to create “intimate publics” (Berlant, 2008, p. viii) through public performances of women’s knowledge to raise consciousness and promote feminist ways of knowing (Kline 2015; Hayden 1997). Consciousness-raising that draws on experiential knowledge gathered momentum (Dubriwny 2005).

The 1970s, thus, was a time of cultural ripening for women’s bodies to be a valid topic of public conversation, with women’s perspectives and witnessing of their embodied and medical lives put up for not just scrutiny but to be used as evidence for political and social arguments about sexuality and reproductive rights. Major landmark political and judicial decisions such as the legalization of birth control for all citizens of the United States, irrespective of marital status

(1972), and the Supreme Court decision Roe v. Wade (1973) engaged women’s medical and extra-medical experiences to argue for legal and social changes in medical care. I use the term extra-medical here to mean things that happen within and to women’s bodies that are simultaneously seen as “natural” (such as conception, pregnancy, labor and delivery) and are highly medicalized, including pregnancy events that can alter the status of the woman’s

‘patienthood.’ For example, in the case of pregnancy and prenatal care, a patient whose pregnancy has been diagnosed as miscarrying is frequently seen as no longer in need of medical assistance; the very reason for her enrolment in a particular practice or presence in a labor/delivery ward, ultrasound room, or birthing suite, has been stripped away. In this way, a recently pregnant woman may find herself neglected or otherwise pushed out of the medical care

setting in which she so recently was welcomed and through which her subjectivity was constituted. It is in this cultural moment, with the recent publication of Our Bodies, Ourselves, the heightened cultural discourse about sex, reproductive rights/abortion, and feminism, along with the growing body of feminist memoirs, that a nascent move was made to pay attention to women who wanted to talk about babyloss.

Although recorded and published accounts only started to appear in the late 1970s, babyloss stories undoubtedly circulated long before this period, most likely through intimate personal networks—such as orally, in everyday conversation with friends and family members or in personal writing such as letters and diaries. While we don’t really know how commonly babyloss stories were told, we can make some guesses based on what we know about oral narratives and women’s communities, as well as learning from historical studies about maternity and childhood studies. For example, historically women likely were less surprised by the occurrence of pregnancy loss in previous time periods than they are now (Layne 2003), in the time before regular prenatal care and hospital births. In addition, the understood meaning of pregnancy loss has changed over time; childbirth, maternity, and childhood studies researchers have turned to previous eras and cultural locations to examine how pregnancies and infants were viewed as precarious and possibly transitory visitors due to the frequency of pregnancy loss and infant mortality (Hoffert 1987; Scheper-Hughes 1993; Simonds and Rothman 1992). Before the

1970s and even now, women likely talked about their dead babies with sisters, mothers, neighbor women, midwives, and friends, and those stories probably “touched off” tellings (Ochs & Capps

2004) with and by others, reinforcing the commonalities and the meaning that particular community of women gave to babies who didn’t survive.

So what happened when babyloss stories started circulating in print texts, as they did in the early 1980s when the first of the books in my study was published? And what supported these texts’ growing presence in public and print spaces? One explanation for the emergence and attention to women’s stories about pregnancy loss, according to anthropologist L. Layne in

Motherhood Lost: A Feminist Account of Pregnancy Loss in America (2003), can be attributed to the “increasingly important role in the public imaginary that fetuses have come to occupy” in the

1970s and 1980s, as well as the simultaneous rise in reproductive technologies (Layne, p. 16).

Because of significant advances in prenatal medical care that socially constructed an unborn fetus visually (through the rise of ultrasound) and the social construction of expectant women as mothers-to-be (through discipline, education, and rhetorical framing of the pregnant body), pregnancy was no longer viewed as a private or hidden matter; it became a subject of discussion, debate, and discourse. In revealing to the increased attention to fetuses as well as to the ways that women’s reproductive experiences were being shaped by new technologies, Layne points to some ways that pregnancy and childbirth became available for public discussion and conversation. As a consequence, women’s experiences of miscarriage or stillbirth, which were likely previously limited to circulation within person-to-person networks, began to gain an audience and validation in more public spaces. The public discussion of a heretofore private lived experience becomes visible because of the entangled political, academic, personal, and medical debates going on about women’s bodies, reproduction, reproductive rights, fetal personhood, and feminism.

The books under study in this chapter all contribute to the increasing publicity of women’s bodies and experiences by sharing women’s accounts of babyloss to general audiences.

In turning to these texts, my aim is to highlight patterns and changes in how babyloss stories are

presented and narrated. Specifically, I identify two themes in babyloss storytelling and author/contributor interactions that illuminate how personal stories emerge and are contained in these print texts. I show how authority and anonymity emerge within the interactions leading up to publication and circulation as well as within the babyloss narratives and what Genette (1997) calls the paratextual elements of these published texts. Reading these babyloss stories reveals how the authors of the books in which these stories appear navigate tensions around how much to identify or anonymize babyloss mothers' and babies' names as well as how the textual affordances of print books, including typography and prose style, contribute to narrative embeddedness. This argument thus contributes to an understanding of the importance of considering not only narrative content, but also narrative materiality and the interactional conditions for stories’ emergence. In the next section, I introduce the seven books that are the focus of my analysis in this chapter.

Print Texts about Babyloss Each of the books I analyze here, published between 1982 to 2016, grant insights into the ways that childbirth educators, medical doctors, and academic researchers have worked to bring babyloss stories into textual existence. Such emergence enables these stories to be read, circulated, and studied. All of the books take as their subject miscarriage and stillbirth and draw heavily on interviews with babyloss parents. Despite these initial similarities, however, they nevertheless vary widely in how they frame and anonymize the resulting babyloss stories, ranging from relying heavily on depersonalized stories from parent narrators to privileging and centering named individual narrators. To understand these differences, we can turn to several key patterns in the materialization and entextualization of babyloss stories. Across these books, the authors generally acknowledge the potency of parent narrators’ stories and parent voices are

simultaneously set apart and embedded as supporting evidence for the authors’ overall arguments. Over time, these books show shifts in how authorizing and co-telling happen as well as in the ways that narratives are embedded within the printed texts, leading to higher perceptibility and identifiability of babyloss mothers and their babies in later books compared to those published earlier.

Table 1 The print books in this study.

Author Title Type of book Parent Contributor Publication Date

and author Details

Jiménez, The Other Authored Indeterminate, some 1982

Sherry Side of book, birth named, some

Lynn Pregnancy: educator anonymized/untagged

Mims Coping with

Miscarriage

and

Stillbirth

Ewy, Death of a Authored Indeterminate, most 1984

Donna Dream: book, birth anonymized, some and Miscarriage, educators with real names

Rodger Stillbirth,

Ewy and

Newborn

Loss

DeFrain, Stillborn: Authored Hundreds, 1986

John D. et The Invisible book, anonymized al. Death sociologists

Malacrida, Mourning Authored 25, anonymized 1998

Claudia the Dreams: book,

How sociologist

Parents

Create

Meaning

from

Miscarriage,

Stillbirth,

and Early

Infant Death

Berman, Parenthood Authored ~40, anonymized 2001

Michael Lost: book. Medical

Healing the doctor

Pain After

Miscarriage,

Stillbirth,

and Infant

Loss

Atlas, They Were Edited 21, named writers 2010

Janel Still Born: collection,

Personal writer/essayist

Stories

about

Stillbirth

Davis, Empty Authored Thousands, real first 2016

Deborah Cradle, book, names

Broken psychologist

Heart:

Surviving

the Death of

Your Baby

Jiménez, The Other Side of Pregnancy: Coping with Miscarriage and Stillbirth

Childbirth educator S. L. Jiménez shares stories of bereaved parents in the oldest book in this study, The Other Side of Pregnancy: Coping with Miscarriage and Stillbirth (1982). Jiménez indicates that her goal in writing the book is to share information about pregnancy loss that “has been repressed in the past by the benevolent conspiracy of silence” (p. xv); the short book seeks to shed light on the “other side” of what can happen to pregnancies, to normalize something frequently neglected or dismissed. The sample size of bereaved parent participants is not made explicit, but Jiménez indicates that the stories are all drawn from patients and clients she knows personally through her work as a childbirth educator. In the preface, Jiménez writes that

“parents’ comments” are “woven” with “explanations to help you [the reader] use their experiences for your own benefit” (p. viii). The Other Side of Pregnancy is targeted to parents who have themselves recently had a pregnancy loss. Because at the time it was published there was so little information about the reality of pregnancy loss and a dearth of materials supporting families in how to cope, much of Jiménez’s book is focused on providing basic medical information about miscarriage and stillbirth and their causes, laying the groundwork for readers who might not have any other place to turn for information and examples. Jiménez includes medical illustrations related to pregnancy and pregnancy loss, which results in a biomedically- focused guidebook to miscarriage and stillbirth as a largely medical phenomenon.

Ewy and Ewy, Death of a Dream: Miscarriage, Stillbirth, and Infant Loss

In their book D. Ewy and R. Ewy aim to counter the lack of preparedness babyloss parents face both personally and within health care settings. Taking the approach of informing readers and offering advice about how to support bereaved parents, childbirth educators Ewy and

Ewy published Death of a Dream: Miscarriage, Stillbirth, and Infant Loss just two years after

Jiménez’s book came out in 1984. The book is small and runs 166 pages, and it is targeted at

readers who have themselves have endured a recent pregnancy loss and at those around them.

The back cover description says that it’s “an equally insightful resource for doctors, support staff, and relatives” (Ewy & Ewy 1984). The babyloss stories that are peppered throughout the brief text mostly appear as supporting evidence in the form of direct quotes to back up the authors’ point. These first person stories are brief and offer narrative entry points to the topic

Ewy and Ewy want to explicate and are drawn from interviews with babyloss parents personally known to Ewy and Ewy (p. 3). Ewy and Ewy also include medical diagrams and biological information pertaining to miscarriage and stillbirth as medical events.

DeFrain et al., Stillborn: The Invisible Death

The third text that was published—moving chronologically across the texts included here—is Stillborn: The Invisible Death (1985). Authored by John DeFrain, Leona Martins, Jan

Stork, and Warren Stork, this text marks a departure from the more medically informational and straightforward approach taken by Jiménez and Ewy and Ewy. In contrast, DeFrain et al. bring a sociological and family studies approach to the phenomenon of babyloss experiences and narratives about them; DeFrain is a professor in the Department of Human Development and the

Family; his three co-authors are all babyloss parents who hold M.S. degrees in human development and the family. In addition, Jan and Warren Stork founded a support group for parents who have experienced the death of a baby. Stillborn does not take a medical approach to the topic of babyloss, instead looking at the babyloss experience more sociologically. Unlike the previous books I’ve introduced, there are no medical explanations or descriptions offered.

Instead, the book takes a phenomenological approach, reporting on variations across a large group of people with a shared experience who each describe what happened and how it felt.

DeFrain et al. also cast a very wide net for collecting stories, having conducted a nationwide search that culminated in 3503 babyloss parents’ contributions. The topics related to stillbirth covered in the book are wide ranging, including parent thoughts about funerals, support groups, impact on romantic relationships, subsequent pregnancies.4

Malacrida, Mourning the Dreams: How Parents Create Meaning from Miscarriage, Stillbirth, and Early Infant Death

In Mourning the Dreams: How Parents Create Meaning from Miscarriage, Stillbirth, and

Early Infant Death (1998), sociologist Claudia Malacrida reports on research she did to understand the meaning-making that grieving parents perform after a child dies. Published by

Qual Institute Press, a qualitative methodology publisher, this book largely conforms to standard academic genre conventions, including an extensive literature review, a methodology section, and is replete with scholarly citations. Malacrida’s book is for those who want to “understand how parents who have suffered the death of a child through perinatal loss come to create meaning from their own losses” (1998, p. vii). Thus, while the intended audience does not exclude grieving parents, it is addressed more toward audiences who are interested in understanding the “connection between private loss and other dimensions of human life such as public acknowledgement, social support, and prevailing social norms” (p. viii). Malacrida also draws on her own personal experience with pregnancy loss, yet the sociological perspective

3 DeFrain et al. interviewed 22 families in person (1986, p. 12), then published a letter calling for volunteers in newspapers around the United States which yielded letters from 550 volunteers in all 50 states. The letters received became part of DeFrain et al.’s data and are quoted from in the book (p. 13-15). The 550 people who expressed interest in participating in the study then were mailed an extensive questionnaire, and 304 were completed and returned. 4 Stillborn: The Invisible Death runs 247 pages in comparison with The Other Side of Pregnancy’s 152 pages and Death of a Dream’s 166 pages. 50

informs how she reports the interviews she conducted with 25 babyloss parents. Like DeFrain et al., Malacrida approaches babyloss through a sociological and psychological framework, not a medical one.

Berman, Parenthood Lost: Healing the Pain after Miscarriage, Stillbirth, and Infant Death

Michael Berman’s Parenthood Lost: Healing the Pain after Miscarriage, Stillbirth, and

Infant Death (2001) includes Berman’s own reflective and poetic writing alongside stories from bereaved babyloss patients Berman has cared for. Parenthood Lost’s intended reader is a person enduring their own pregnancy loss (as indicated in the subtitle’s reference to “healing”); Berman tells the reader that they will “find uninhibited expressions of [his] emotions and of the mystical spirit of [his] participation in the processes of birth, of life, and of death, as well as testimony to the optimism [he] has shared with” patients through the years (2001, p. xix). Berman also describes his book as something of a memoir, “a journey and a journal of [his] feelings as an obstetrician” (p. xix). Parenthood Lost interweaves medical information, author reflection, and parent stories. In a bit of a return to a consideration for biomedical framing, Berman’s book includes informational chapters by “practicing physicians” (p. xix) about the causes and prevention of stillbirth as a medical phenomenon.

Atlas, They Were Still Born: Personal Stories about Stillbirth

Atlas’s edited collection, They Were Still Born: Personal Stories about Stillbirth (2010), includes 21 essays invited from writers with experiences with stillbirth. As such it does not rely on interviews to elicit the narratives, but it can be seen as a bridge from the previous books selected for this study to the writing of online narratives that I will take as a site for interpretation in Chapter 5. Each parent contributor’s chapter is written in the first person and bears the name

of the writer. They Were Still Born showcases yet another means by which babyloss narratives entered broader circulation through print texts. The intended reader is a bereaved person or family member/friend, and the final one-third of the text is medical information and other resources for babyloss individuals, written by medical doctors and researchers working in stillbirth prevention. Atlas’s book is published by Rowman & Littlefield, a press specializing in both academic and general materials.

Davis, Empty Cradle: Broken Heart: Surviving the Death of Your Baby

The most recently published book in the study is the third edition of Deborah Davis’s

Empty Cradle, Broken Heart: Surviving the Death of Your Baby (2016), but the initial version appeared in 1991, so Davis’s book spans several decades of the chronology I describe here. As the subtitle indicates, the audience is mostly bereaved and grieving parents who are looking for something to help them “survive” the death of a baby. The book’s cover describes itself as a national bestseller. In the preface to the newest edition, Davis explains some of the cultural changes that have occurred since the first edition came out, including the vast evidence-based changes brought about in quality perinatal bereavement care (p. xv). The 2016 edition also incorporates new insights about babyloss grief drawn from the fields of grief counseling and psychology, including mindfulness-based practices (p. xiv). The latest edition has been extensively updated and expanded from the 2nd edition, with Davis adding the voices of dozens more babyloss parents, a move that ultimately more than doubled the length of the book. Davis includes medical information but only through the materials that come from parent contributors, not from health professionals; her book is more of a guide to surviving babyloss than a text explaining the causes and effects of miscarriage or stillbirth.

Dimensions of Storytelling: Tellership and Embeddedness

All of the books discussed above incorporate babyloss narratives into their texts in varying ways. While there are significant differences across them, we can understand the increasing emergence of babyloss stories over the thirty-year period spanning Jiménez’s to

Davis’s third edition as showing a general trend toward increasing the identifiability of babyloss narrators and toward greater detachment of babyloss narratives from the text surrounding them.

To illustrate this shift, I turn here to two core narrative dimensions: tellership and embeddedness.

Before moving into tellership and embeddedness, however, it is important to understand these books as a kind of ‘story container.’ By story container, I simply mean that the books collect together many stories and hold them together in some way, shape, or form. I adopt a

“dimensional approach to narrative” (Ochs & Capps, 2004, p. 19), drawing on the concept that narratives are a “genre and activity [that] can be fruitfully examined in terms of a set of dimensions that a narrative displays to differing degrees and in different ways” (p. 19, original emphasis). Rather than seeing narrative as a thing with established and clearly defined characteristics, narrative theorists Ochs and Capps argue that narrative qualities can be seen as being along a continuum on several dimensions and that a person performs a “narrative activity” that is “interactional” with their interlocutors (2004, p. 3). Like the “largely silent psychoanalyst’s powerful role,” the role of the interviewer can seem relatively passive but can actively influence the “shape of the narrative” that is told (Ochs & Capps, p. 24-25). To varying degrees, the authors of the books in my study all elicit and capture the stories that then appear within the pages of these texts. I thus take up Ochs and Capps’ dimensions of tellership and embeddedness to better understand the nature of co-telling and how the resulting babyloss stories that came out in interviews are embedded in particular ways to promote authority and represent

(or diminish) individual identities. Many of the stories in these texts were gleaned from interview settings (DeFrain et al.; Malacrida; Davis) so the narratives contained within these books were originally told by research participants orally to a researcher/author. The others involve pre- existing relationships with patients or clients (Jiménez; Ewy and Ewy; Berman) and submissions solicited from parent narrators (Atlas).

Embeddedness

Ochs and Capps define embeddedness in terms of how a story fits in the context in which they are told, whether it is “an entity unto itself, separate from prior, concurrent, and subsequent discourse” or difficult to separate from its surrounding context, including “turn organization, thematic content, and rhetorical structuring” (2004, p. 36). The spectrum Ochs and Capps delineate is that of “relatively detached” to “relatively embedded” narratives. Detached stories

“relate reportable events in a distinct rhetorical format” from the surrounding discourse (Ochs &

Capps, p. 37). In contrast, “embedded narratives” often “illustrate a point, make a comparison, support an argument, or otherwise elaborate a focus of concern” and are told in a conversational exchange where the surrounding context is interwoven with the intention and execution of the storytelling act (Ochs & Capps, p. 37). I extend Ochs and Capps’ concept from verbal and conversational embeddedness of narratives to print spaces, where the heteroglossia, the presence of two or more expressed viewpoints or tongues in a text (Bakhtin 1981), is the focus. In each of the books in my analysis, words and stories from parent contributors are extracted from their original context in interview or survey documents and inserted in some way into the resulting print texts.

How parents’ words and stories are conveyed is handled in different ways by the various authors whose books are in my study, and the dimension of embeddedness and discreteness offers a continuum for describing that movement. Important to determining the degree of embeddedness are features of print texts including space, typography, and syntax. Spatial embeddedness refers to how parent stories are printed on the page in relation to other textual components, including layout, spacing, indentation, and centering of parent stories. The visual elements of how parent words are presented is also a typographical matter, involving features such as italicization, bolding, different size type, and/or different fonts or colors. Embeddedness can also be identified through syntactical patterns, such as whether the book author reports parent stories through direct quotes or paraphrase, in complete sentences or in fragmentary phrases within longer sentences.

The degree of embeddedness of parent stories within these books is in part visually constructed. To embed something is to fix it firmly within the surrounding mass, making it hard to remove or separate out. Jiménez includes words from parents throughout The Other Side of

Pregnancy, woven into her own statements. In this text, parent stories appear within the flow of

Jiménez’s own words and ideas, unmarked except by quotation marks, although many are paraphrased without quotation marks. For example, in Figure 1 below, showing a typical page of the text, Jiménez includes a story from “Sandra,” whose baby stopped moving at 7 ½ months pregnant:

Parent stories embedded in Jiménez

Figure 1 This example shows how Jiménez’s book embeds parents’ stories within the flow of the printed text surrounding it. There is little to indicate either its origins from elsewhere or to visually make it distinguishable. In the paragraph before Sandra’s story, Jiménez presents information about what to expect as far as the visual appearance of a stillborn baby. Sandra’s narrative is delivered to the reader as an “as told to” story, reported by Jiménez in paraphrase or summary here, relatively unmarked visually. Of the texts in this study, Jiménez is an outlier in presenting babyloss stories as a deeply embedded element of her larger project. As the earliest text in this study, The Other Side of Pregnancy uses the stories from parents to destigmatize and normalize babyloss, but does not focus on highlighting or setting aside parent stories as do other texts in this study, such as DeFrain et al., Malacrida, Berman, Atlas, and Davis.

In contrast to the deep embeddedness in Jiménez’s book, parents’ stories are much more detached in DeFrain et al.’s book. In Stillborn: The Invisible Death, babyloss contributors’ thoughts are indented from the surrounding text and presented in a smaller font outside the flow of DeFrain et al.’s commentary. The text presenting parent words is slightly smaller than the author text, which is interesting in literally minimizing the very voices DeFrain et al. claim to be magnifying. However, the margin of white space around each of the narrative snippets literally leaves space for the stories to stand alone, a higher degree of detachment than in those books that fold and anchor parents’ words amidst the author’s words:

DeFrain et al.'s parent stories are more discrete.

Figure 2

Another means of detachment appears in Empty Cradle, Broken Heart. Here, Davis keeps the font size the same as the surrounding text, and instead of remaining non-italicized, the parent words are further called out with italics, a typographic choice primarily used to denote titles and or to call attention to a particular word or phrase to differentiate it from the surrounding sentence

(see Figure 3). Davis relies heavily on italics as a means of emphasis, employing it with parent words throughout the text. In addition, words attributed to parents are in a sans serif font, further marking them visually as different from Davis’s surrounding text.

Davis (2016) sets parents’ words apart with margins and italics.

Figure 3

Perhaps the books that incorporate stories in the most detached way are Berman’s and

Atlas’s, where parent stories receive their own pages or chapters and are thus visually and spatially removed from authorial and editorial framing. Although there is framing in the paratext

(introduction, preface, acknowledgements, and forward), ultimately the reader can encounter and interact with parents’ stories in Atlas’s and Berman’s books as discrete entities, warranting their own devoted pages within the collection. Bounded by white space and included in the table of contents, the stories in Atlas and Berman are treated as their own discrete and bounded segments.

The edges and boundaries that separate David Hlavsa’s story (Atlas 2010 p. 13) from those that precede and follow his are quite clear:

Atlas's collection separates each parent story into its own chapter

Figure 4

The dimension of embeddedness is not simply spatial or typographical; it is also created through the way that authors present a babyloss storyteller’s tale using particular words. Authors can report babyloss parents’ words verbatim, in direct quotes, in indirect speech, or in paraphrase. Thus, at a word to word level, the decision an author makes about how to report parent words is noticeable through sentence level decisions. In Figure 1, Jiménez paraphrases a story told to her by research participant Sandra. None of the words appear in quotation marks or are tagged with attribution notation such as “she said.” Instead, Sandra’s story is embedded in print both on the paragraph and the page as well as within the argument Jiménez is making here about difficulty receiving compassionate and timely medical care after confirmation of fetal demise.

In contrast to the highly embedded stories throughout Jiménez’s book, the stories contained in DeFrain et al. and Davis are not only visually distinct from surrounding text—they are also called out and explicitly promoted as the most important components of the books. For example, DeFrain et al. write that they resisted the urge to categorize “parents’ comments” into

“a few basic groupings” (1986, p. 58). “Rather than doing the parents a disservice by putting their grief into little boxes, we will simply let them do most of the talking” (DeFrain et al., p. 58).

Throughout the book, DeFrain et al. use a simple template to present parent words: they directly state the question or topic at hand and then print parents’ directly quoted stories, each separated from the surrounding text and other parent stories with asterisks. DeFrain et al. repeatedly write things like, “We offer no editorial conclusion, only another captivating description” (p. 80) or even imply that there is nothing anyone could say after hearing a particularly sad story: “What can one write about this poignant image?” (DeFrain et al., p. 81). In a particularly powerful refusal to editorialize, DeFrain et al. say they do not want to “bombard the reader with our own

words” (p. 88). A leitmotif repeated throughout Stillborn is the command to the reader to listen:

“rather than say any more, let us simply listen to parents as they tell it so well” (p. 106); “just listen” (p. 107); “Listen. Listen closely” (p. 108); “Listen to what stillbirth parents considered important” (p. 109); “listen to this mother talk about who helped her the most” (p. 127); “let the parents speak for themselves” (p. 128), and so on. This pattern of introducing babyloss narrators’ verbatim words enacts an ethos of amplifying the stories of those directly impacted by babyloss, each story standing out on the page and distinct from the authors’ words.

The presentation of parent stories in Empty Cradle, Broken Heart (Davis 2016) similarly amplifies parents’ voices. Indeed, in the introduction, Davis goes so far as to encourage readers to focus first on parents’ narratives, writing, “It is not necessary to read this book from start to finish… At first, you may want to only focus on the quotes of the mothers and fathers featured in these pages” (2016, p. xvi). By explicitly encouraging the reader to prioritize parents’ stories and words, Davis gives readers permission to skip the sections of the book that are summative, descriptive, or suggestive. This decenters her authorship and centers parent stories as discrete from the book as a whole. Significantly, this suggestion did not appear in the first or second editions of the text. Indeed, in the second edition, Davis only writes that “it is not necessary to read this book from start to finish… take in whatever seems helpful, and pass by whatever isn’t”

(1996, p. xiii), but in the most recent edition she explicitly privileges parent voices over her own.

This further emphasis on parent stories over author content is reinforced by the visual, as the second edition set narrator words apart by indenting and labeling by name, but the third edition follows suit but further calls out parent words with italics:

Davis's 2nd edition puts white space around parent words. Figure 5

Davis's 3rd edition italicizes parent words, marking them visually. Figure 6

The dimensions of embeddedness and discreteness can help us understand the ways that authors orient to parent stories that are included in the texts at large. As the stories that emerged within research spaces—interviews, surveys, submissions from participants—move from that original context and are reported in the print texts, they are differently contextualized and entextualized in ways that influence how much readers associate them with individual babyloss tellers or within the researcher/author’s broader project. One way of considering the control and emphasis an author places on the parent narrators’ stories is by examining where the stories fall on the spectrum from embedded to discrete, because doing so acknowledges the mediated nature of these stories and the subtle ways in which our encounter with them is filtered through the

“researcher’s cut” (Livholts & Tamboukou, 2015. p. 17), as well as their seemingly banal typographical, spatial, and syntactical characteristics on the page.

Identifiability

The second dimension useful for understanding the imbrication of babyloss narratives within these print texts is that of identifiability, ranging on a continuum from fully identifiable to anonymous. While this dimension does not have a direct corollary in Ochs and Capps’s model, as their analysis of “living narrative” is predicated on in-person dialogues, there is a parallel with their concept of tellership, which “refers to the extent and kind of involvement of conversational partners in the actual recounting of a narrative” (2004, p. 24). In other words, tellership involves the entanglement and interplay between the interlocutors whose conversation comprises the narrative. In the case of the babyloss stories contained within the print texts in this study, we do not have access to the co-telling interview context and thus cannot fully analyze the degree to which the books’ authors may have shaped the stories that appear in the final print texts.

Nevertheless, there are different ways of tracing evidence of these interactions within these print texts. One such way involves turning to the question of how identifiable the parent narrators and their babies are. Identifiability is enacted in different ways across the books in this study and sometimes varies across a particular text.

One way to map the dimension of anonymity and identifiability is by noting the ways that authors call out, tag, label, and attribute stories and anecdotes. Anonymity and identifiability aren’t simply about whether names are attached to parent words, although that is certainly the most transparent and obvious trait of these texts to assess. Examining paratextual elements

(Genette 1997) can offer further insights into how identifiability functions within a given book.

Genette uses the term “paratext” to refer to the content and characteristics of material included and providing a frame in a text aside from the main body of the work. For example, the title

page, front matter (including dedication, opening information, foreword or preface), back matter

(including the index and endpapers), footnotes, and other materials not necessarily crafted by the author can all be understood as examples of paratexts. Paratextual elements can also include formatting or typography, both of which I take into consideration in my analysis.

Two paratextual locations are particularly helpful for analyzing identifiability: the introductory or prefatory description of how authors describe the decisions they made about maintaining or removing personalizing details from the stories in order to prevent identification of the contributor, and the index, where parent names may be excluded or included as searchable, traceable terms. How author-researchers identify or anonymize their parent storytellers is an important consideration in how authority functions within these narratives. Naming or otherwise indicating something about who each of the individual babyloss parents is may be particularly important in the case of emergent babyloss stories, particularly because of the historic invisibility and taboo nature of pregnancy loss in public spaces. Thus, the parents who shared their personal stories about miscarriages and stillbirths may be especially invested in their stories being seen as important and having value for what makes their babies’ deaths unique. Many babyloss narrators are motivated to tell stories about their babies in order to have their babies’ existence affirmed and in doing so validating what J. Bueno terms their “child in mind” who died (2019). Yet for the authors who conduct these interviews, the personal and identifiable details may feel more inconsequential to the larger book project. These seemingly oppositional needs—the parent contributors’ need to maintain the unique and deeply personal details of a loss and the authors’/editors’ universalizing and anonymizing impulse—help illuminate the path of babyloss storying from the oral to the relatively anonymous to deeply personal yet public (in Chapters 5 and 7).

Individual babyloss parents’ names and other identifying details such as their babies’ names, the cause of death, and details that could illustrate the particularity of what their grief experience has been like are included or redacted in each text. What I notice when I consider this dimension of the textual storytelling encounter is that the authors control these facts and therefore have the last word on how public or private the babyloss parent identities are in the resulting text. Excising a story from the interview context in which it was told to include it in a collection inevitably elides individuality. This elision of individuality in some ways conflicts with the desire evident in the broader literature about babyloss and perinatal grief for bereaved parents to have their children’s names be remembered (Layne 2003; Cacciatore 2010; Davis

2016). Yet in moving from a spoken interview context to a print book, many of these babyloss narratives are anonymized and stripped of their individual qualities. DeFrain et al. address this paradox in “The People in this Book,” a brief chapter about method that follows the introduction but precedes the first chapter reporting findings from the study: “In this particular instance, perhaps in our effort to protect [participant identities], we in fact do just the opposite. We took away these children’s names—their claim to have existed” (1986, p. 15). This may feel like a betrayal, given the intensely personal nature of the stories. Yet navigating the migration of a rhetorical performance from its initial telling to a new rhetorical situation requires a rearrangement of what is most important. Within an interview context, the narrator’s aims may be to connect with their listener, to communicate all the seemingly mundane details, to take the opportunity to speak their baby’s name as many times as possible after years of only thinking it.

Yet when the researcher incorporates that vignette into a broader collection of stories, it must be pared down and the details that set it apart must be removed in order to dovetail with surrounding narratives. Ochs and Capps point out this paradox as well, writing that “the practice

of rendering personal experience in narrative form entails de-personalization. Though the experiences may be unique, they become socially forged” (2004, p. 55). In this process, parent narrators receive personal validation within the interview setting but then their stories become largely anonymized within the resulting text.

In this study, the most anonymized parent voices appear in DeFrain et al., Malacrida, and

Berman. Yet the reasons for the anonymizing of these storytellers is, I argue, different for

Berman than for the other authors. DeFrain et al. and Malacrida both take a sociological approach to understanding babyloss experiences, meaning that their disciplinary framework is most interested in the social study of society, institutions, and social relationships. A sociological approach is largely concerned with groups and social trends, even when it takes an individual as its subject of analysis. Therefore, the interview-derived stories DeFrain et al. and Malacrida include and discuss in their respective studies are mostly interesting for what they can show about a group or a social trend. Both books with a sociological approach are also geared toward more academic audiences, therefore dictating a level of anonymizing of sources not as essential in other books in this study.

In contrast, Berman’s Parenthood Lost: Healing the Pain after Miscarriage, Stillbirth, and Infant Death (2001) foregrounds his own poetic and journalistic meaning-making as an obstetrician, and Berman does so by anonymizing and universalizing his parent contributors.

Making himself the poetic spokesperson on the subject of Parenthood Lost (an homage to John

Milton’s Paradise Lost), Berman tells the reader that they will “find uninhibited expressions of

[his] emotions and of the mystical spirit of [his] participation in the processes of birth, of life, and of death, as well as testimony to the optimism [he] has shared with” patients through the years (p. xix). Like Malacrida and DeFrain et al., Berman omits or changes identifications of

babyloss parents, explaining that he does to in order to “preserve anonymity of the patient- contributors” (p. xix). Yet unlike other books in this study, the babyloss stories Berman includes are acknowledged to be edited and were not captured in interviews. Instead they are “written by

[his] patients themselves” (p. xix), which seems more similar to online storytelling contexts like blogs and message boards.5 While in the dimension of embeddedness versus discreteness,

Berman isolates parent stories on their own pages, thus visually setting them as bounded entities, they are highly anonymized and edited. Berman writes:

I have chosen to explore the ‘feeling’ of the stories so the reader may grasp the

universality of emotions inherent in these untimely deaths... As the stories are read and

reread, they appear to become as one, expressing common thoughts and common

feelings; sharing common words, phrases, and sentiments that trumpet the pain of each

author-parent. Herein rests their value. (Berman 2001, p. 26, emphasis added)

Berman’s approach to selecting stories that enable him to “explore the ‘feeling’” aspect of loss takes precedence over what any babyloss contributor individually may have wanted to emphasize. Berman’s universalizing impulse, his desire that the stories “appear to become as one,” assumes that the value of these stories is not in their individual impact; in contrast, it is through what they have in common that they have “value.” The use of the word “value” indicates authorial judgement about what kind of story deserves attention. Yet a contributor might have, in writing their story out, valued something entirely different than Berman does, but as readers we cannot know that, nor is the contributor’s voice accessible to readers. In editing to emphasize or diminish some aspect of the parent story—in the case of Berman’s book, the universal emotions

5 Indeed, Berman was the founder of one of the first such message boards, Hygeia.com. 68

around grief—the story may be framed or revised to downplay things that were vital to the original narrator.

The newest book in my study, Davis’ third edition of Empty Cradle, Broken Heart, offers a different model from the others examined thus far. Although Davis extracts parents’ stories from the longer interview contexts in which they are told, she ultimately maintains storytellers’ individuality by keeping parent names attached to the quotes she includes in her book. In turn, this authorial practice with using contributor names makes it possible to trace one person’s narrative through multiple places in the text, something that we cannot do with other texts that feature interview snippets (e.g., DeFrain et al. and Malacrida). For example, because Davis tags all of the direct quotes drawn from parent contributors’ stories, readers can piece together a larger picture of a parent’s story by reading across the whole book and noting that parent’s precise words. This preservation of parent identity through using actual names aligns Davis as more of a collector and curator than the all-powerful author figure, and Davis’ collection methods reflect a similar approach. Davis acknowledges that the Internet “played a significant role in this edition, in that it brought parents to [her] from around the world” (p. xv), whose words are highly “featured” throughout the book (xvi). Davis indicates that her interactions with babyloss parents and their stories took place “over the course of many months or even years, so as you read different quotes, you get a window into not just their deep distress, but also their transformation and healing” (p. xv). This is possible because parent names, baby names, and other specific details (such as cause of fetal demise, circumstances surrounding the loss, partner and living children’s names, etc.) are also preserved, whereas in other texts they are redacted.

The paratext of Davis’s book grants valuable insights into how she negotiates identifying parent storytellers, particularly the index. Strikingly, Davis backs up her commitment to

identifying parent narrators by including named individuals in the index of the book, another change from the previous edition. Davis’ index names 108 individuals under the heading

“Personal Accounts”: from Abby to Winnie, with page numbers for each segment of their story that appears in Empty Cradle, Broken Heart. This paratextual inclusion enacts Davis’ ethos of preserving contributor identities in a real way—readers can easily locate and read across the story told by one particular babyloss narrator.

Davis' third edition includes parent names in the index.

Figure 7

Although there is not a straightforward and uncomplicated line from the level of anonymizing in the first published book to the most recently published book, there does appear to be a trend toward greater transparency of whose words readers are encountering within these books. In particular, it is interesting to notice the significant movement in that direction between

Davis’s second edition (1996) and third edition (2016), with the new inclusion of “personal accounts” as indexed and therefore searchable and the italicization of direct quotes from parent narrators. These changes across editions may epitomize broader rhetorical changes in how personal stories are not only told in an age of social media, micro-blogging, and other online community spaces, but also how even authors who collect, transmit, and amplify the stories of others see the importance of preserving individual identities and identity markers.

Quadrant Dimensions: Emergent Babyloss Stories

Having described and shown examples of how these narrative dimensions can be identified within the print texts in this study, let’s consider these dimensions together in order to understand their significance. Although there is not a direct trajectory, the gradual trend is of moving (although uneven and influenced by the purpose of each of the books in my research sample) toward greater perceptibility and identifiability of babyloss mothers and their babies over time.

What is even more important than change over time in understanding why certain books land in one quadrant or another is turning more carefully to the purpose or focus of each of the print texts. The late 1970s and early 1980s was the beginning of growing awareness of and support for pregnancy loss and perinatal bereavement (Layne 2003), as the first in person support

groups started cropping up around the United States. This is the moment where childbirth educators like Jiménez and Ewy and Ewy wrote their small, relatively local, introductory handbooks to the medical and emotional aspects of babyloss. Then as the political debate around abortion and reproductive rights continued in the mid-1980s and states and the federal government officially recognized Pregnancy and Infant Loss Awareness Month (held in October each year), academics began paying more attention, including psychologists and sociologists.

Such research, including DeFrain et al.’s, drew from a larger pool of parent contributors and needed to be anonymized. The authors write that “in reporting a study of this type, persons’ names and identifying characteristics are often changed to protect those involved from additional hurt” (DeFrain p. 15). The historic moment DeFrain et al. conducted their research resulted in a paradoxical presentation of parents’ stories but without their identifying features that become more prevalent in studies published in 2001 and after. Berman wrote his book at a time when the internet was beginning to serve as a site where people gathered digitally to exchange information, tell stories, and perform online identities. As one of the first to include highly discrete parent stories, Berman’s authorial ethos and his commitment to the “universal” he saw contained in these stories as a collection likely contributed to his choice to largely anonymize the stories in his book. Lastly, Atlas’s essay collection and the 2nd and 3rd editions of Davis’s Empty

Cradle, Broken Heart round out the most discrete and identifiable narratives in this study. Both

Atlas and Davis deliver their books to intended readers with a stated intention of supporting recently bereaved parents and aim to do so by recounting and spreading highly personal and individual stories that display the range of feelings, reactions, and grief journeys of the babyloss narrators whose stories they forward. Overall, the trend from the early 1980s to the books

published within the last few years shows movement toward greater perceptibility and identifiability of babyloss mothers and their babies.

Table 2

Print books in their quadrants.

Anonymous and discrete: Berman and Identified and discrete: Atlas, Davis (1996),

DeFrain et al. and Davis (2016)

Anonymous and embedded: Malacrida Identified and embedded: Jiménez and Ewy

and Ewy

The initial two or three books were less concerned with showing parent narrators as individuals and with stories as individual performance. Instead, the authors were trying to break the silence about how prevalent and devastating pregnancy loss can be. Later books were able to build on the growing prominence of babyloss as a topic, thereby including individual stories that differentiate rather than exemplify babyloss experiences. Books published after 2001 are less focused on establishing the medical reality and statistical frequency of miscarriage and stillbirth and are more focused on meaning-making and community building and advocacy.

The authors who include babyloss narratives on the discrete end of that dimension allow for individual stories to receive attention as experiential instances of loss, whereas the authors who embedded them allows for a collective narrative to be cultivated. These authorial and editorial decisions are rhetorical ones with political implications for whose stories are

told/reported and how they are homogenized to stand in for a collective tidied narrative. As Ochs and Capps point out, the urge to tell a story is an

eternal struggle between two fundamental tendencies of Being: its will (entropic) to make

things uniform, to dissolve and blend together all of its particular expressions and

homogenize itself entirely; and its creative or curatorial (anti-entropic) will to defend,

strengthen, and cultivate the uniqueness of its richly varied manifestations. (Ochs and

Caps pp. 17-18)

This is true within the telling of an individual story, and it also applies to the broader narrative each author of these books creates by bringing together a variety of disparate stories in service to a larger book-level argument/narrative arc. In this situation, as in all of the books in this study, the “packaging several heterogeneous stories as a collection can blur their differing contexts and truth claims, giving the misleading effect of a single shared story,” warn Smith and Watson

(2010, p. 101). The two tendencies of being highlighted by Ochs and Capps— coherence/universality/blending vis a vis uniqueness/particularity/self-as-individual—are navigated both within the original storytelling encounter and then taken up again in how the researcher authors embed and anonymize (or make discrete and identify) the stories entrusted to them.

The print texts in this study represent a range of ways print authors negotiate this, and in the next chapter I move from print spaces where babyloss stories are told to an online space. My analysis here establishes the mediated elements of co-telling in interpersonal interviews and the subsequent authorial influence over how those stories are framed in print books. Two of the books refer to online and digital storytelling that was not available when the first books in this study came out; Davis writes, “The Internet played a significant role in this edition, in that it

brought parents to me from around the world” (2016, p. xv). Berman describes in more detail the role that the internet played in collecting the stories that appear in his book:

Before electronic mail because available, before bereavement groups became

international foundations, the only means for sharing feelings was personal contact with

friends and family members, medical personnel, clergy, and bereavement counselors,

either alone or in a group setting. Electronic communications… has [sic] established

itself as an important medium, if not the paradigm, for contemporary communications, in

that it enables its users to communicate and share, worldwide, irrespective of geographic

borders and demographic differences. (2001, p. 25)

The motivation of sharing their child in mind and the resultant desire to be affirmed may have motivated some of the parent contributors to the print books. But now, the feelings a bereaved parent experiences, the story of what happened, the telling of it, can now migrate to a new socio- rhetorical co-telling space: online.

REFERENCES

Atlas, Janel. (2010). They Were Still Born: Personal Stories about Stillbirth. Lanham

MD: Rowman and Littlefield.

Berlant, L. (2008). The Female Complaint: The Unfinished Business of Sentimentality in

American Culture. Chapel Hill: Duke University Press.

Berman, M. (2001). Parenthood Lost: Healing the Pain after Miscarriage, Stillbirth, and

Infant Death. Westport, CT: Bergin and Garvey.

Bakhtin M.M. (1981). Michael Holquist (ed.). The Dialogic Imagination: Four Essays.

Austin: University of Texas Press.

Boston Women’s Health Book Collective. (1973). Our bodies, ourselves. New York, NY:

Simon and Schuster.

Brinkmann, S. (2018). The Interview. In N. Denzin & Y. Lincoln, (Eds.), Sage handbook

of qualitative research (pp. 576-599). Sage.

Cacciatore, J. (2017). Bearing the Unbearable: Love, Loss, and the Heartbreaking Path

of Grief. Somerville, MA: Wisdom Publications.

Davis, Deborah. (1996.) Empty Cradle, Broken Heart. 2rd edition. Fulcrum Publishers.

------(2016) Empty Cradle, Broken Heart. (3rd edition). Fulcrum Publishers.

DeFrain, John, Leona Martens, Jan Stork, and Warren Stork. (1986). Stillborn: The

Invisible Death. Lexington, MA: Lexington Books.

Doka, K. (1989). Disenfranchised Grief: Recognizing Hidden Sorrow. Lexington Books.

Ewy, D. and Ewy, R. (1984). Death of a Dream: Miscarriage, Stillbirth, and Newborn

Loss. New York: EP Dutton.

Genette, G. (1997). Paratexts: Thresholds of interpretation. J. E. Lewin, translator. New

York: Cambridge University Press.

Hoffert, S. D. (1987). "A Very Peculiar Sorrow": Attitudes Toward Infant Death in the

Urban Northeast, 1800-1860. American Quarterly 39(4), pp. 601-616.

Jiménez, S. L. M. (1982). The Other Side of Pregnancy: Coping with Miscarriage and

Stillbirth. Englewood Cliffs, NJ: Prentice-Hall Publishers.

Kline, W. (2015). Communicating a new consciousness: countercultural print and the

home birth movement in the 1970s. Bulletin of the History of Medicine 89(3), pp.

527-556. DOI: https://doi.org/10.1353/bhm.2015.0065

Layne, L. (2003). Motherhood Lost: A Feminist Account of Pregnancy Loss in America.

Routledge.

Malacrida, C. (1998). Mourning the Dreams: How Parents Create Meaning from

Miscarriage, Stillbirth, and Early Infant Death. Edmonton, Alberta: Qualitative

Institute Press.

Morgen, S. (2002). Into our own hands: The women's health movement in the United

States, 1969-1990. New Brunswick, N.J.: Rutgers UP.

Ochs, E. & Capps, L. (2001). Living Narrative: Creating Lives in Everyday Storytelling.

Cambridge, MA: Harvard UP, 2001. Print.

Ratcliffe, Krista. (2005). Rhetorical Listening: Identification, Gender, Whiteness.

Carbondale: Southern Illinois UP.

Royster, J. J. & Kersch, G. (2012). Feminist rhetorical practices: new horizons for

rhetoric, composition, and literacy studies. Carbondale: Southern Illinois University.

Scheper-Hughes, N. (1993). Death Without Weeping: The Violence of Everyday Life in

Brazil. University of California Press.

Schnier, M. (ed.). (1994). Feminism in Our Time: The Essential Writings, World War II

to the Present. New York: Vintage.

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grief in popular literature. Philadelphia: Temple University Press.

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Minneapolis: University of Minnesota Press.

Chapter 4

POST-EPISTEMIC NOSTALGIA

I do not know the last time I felt Beatrice move. There is no way for me to pinpoint the precise moment when her life ended, when the story of her days slipped from present to past tense. No one was there, monitoring her heartbeat or keeping track of her brain waves. I lack a word to describe that last time, the instant when my daughter last moved. I couldn’t have known, but I want to.

Here’s what I did know: something felt wrong when I woke up on Friday the third of

February. As I opened my eyes I checked in with my large belly, my hand caressing the stretched skin. But something felt different—the mass of my abdomen felt much lower than it had, like it had been pressed down into my pelvis. I ate breakfast and waited for the doctor’s office to open so that I could call. When I got through, I spoke with the nurse, telling her that Beatrice’s movements felt slower and my belly felt different. The nurse assured me that was normal at the end of pregnancy. But even with that advice (which turned out to be bad and wrong), I am not sure when I last felt my baby alive. One of the times she nudged around in my uterus was the last time, but it went unmarked.

There are other situations in which we cannot know, until later, that this time is the last time. Other examples of this concept include the last time you make love with a partner or the last time you participate in a spiritual practice still believing in its power. I’ve spent a lot of time searching for a word to describe the idea of the last time but you

don’t know it’s the last time until whatever it is never happens again. I’ve sought this word in other languages. I’ve asked well-read and inquisitive people. I’ve talked through what the word should be, and finally a poet friend of mine said, “I don’t think this word exists in any language, at least not that you’ve found. Maybe you’ll have to create it yourself.”

I propose the term post-epistemic nostalgia. It is only possible for the pain (nostalgia) to be fully confirmed and inhabited after (post) the knowing (episteme). This term highlights the various elements of the experience: knowing that isn’t and then is; an ending; and an understanding of change and the permeability of presence.

For me, my belly full of a dying baby, I made two huge trays of lasagna on Saturday after calling my doctor on Friday to report decreased movement. I tossed a massive green salad and spread garlic butter on huge sticks of Italian bread. I cleaned two bathrooms and ran the vacuum to prepare for a crowd of friends to come over to watch the Superbowl. I cared for my toddler, talked with my husband, sent emails. I tossed and turned, and then I slept.

When I was doing one of those things—who knows which one—completely unaware of my daughter’s slow motion efforts to cling to life, she died. She made one last movement, perhaps with her hand or her foot. Maybe she shook her head, or nodded it. Her heart beat one last time.

And then she fell asleep, the knot in the umbilical cord cutting off the oxygen she needed to live. I don’t know when that was and I never will. That’s the space of not knowing that I fell into that grief infuses with realization of how things will never ever be the same again.

A pivotal scene in many babyloss narratives is the moment of revelation, when they are told or find out in some other way that it’s too late—that their baby has already died. Babyloss

writers ask how they didn’t know and feel guilty that they had carried a dead baby inside of them, happily oblivious. In a post about her daughter being stillborn, Faces of Loss contributor

Ashleigh describes her doctor telling her that the baby no longer had a heartbeat. “I was so stupid, I didn’t even know what was happening at that moment—Scarlett was gone and I didn’t even know it. What kind of mother am I?” Many babyloss writers grapple with feeling like they were bad parents or that they somehow should have known, if they were good mothers, that something was wrong with their babies. This is part of the sense-making project, of trying to figure out exactly what happened, in telling stories of babyloss. Where did things go wrong?

What signs were there that were unnoticed, unrecognized? And if someone had noticed, could the outcome have been altered—when was the moment when it became too late? We want to know when our stories shifted from what we were expecting to something else entirely. In telling their stories as complete narratives, babyloss narrators connect events, symptoms, and emotions, tracking back to the time before in order to make sense of what came next, and possibly where to move from here.

Chapter 5

INDIVIDUAL LOSS NARRATIVES, COMMUNAL LOSS NARRATIVES, AND

COUNTERING THE REALNESS PROBLEM ONLINE

What I am saying is the life of that baby mattered, whether they were ever actually

on Earth or not. And it’s not just the people around us that need to break down the

walls. We, the grieving parents, need to do it, too. We need to talk about it. We need

to let people in. We need to not compare our stories to others. (Amanda 2)

When we examine individual stories of babyloss included in print texts authored by childbirth educators, doctors, and grief counselors, the dimensions of identifiability and embeddedness emerge as particularly significant. In particular, Chapter 3 showed that clues from the paratext reveal babyloss stories as moving from being anonymous and embedded toward being identifiable and discrete from the surrounding text. This shift underscores the paradox that at the same time that many people who have had babies die want their babies’ names to be repeated and remembered, but that as more babyloss stories are shared publicly, their individuality recedes.

This increased attention to babyloss and growing access to the internet starting in the early 2000s enabled more and more babyloss stories to enter public circulation. These narratives came to be shared on individual websites and on general social media

platforms like message boards, Instagram, Facebook, and Twitter. Some of the earliest babyloss narratives published online were shared in closed message boards like Hygeia,6 BabyZone.com,

BabyCenter.com, and TheBump.com. The online forums accessible through these various sites are chatrooms where participants can start threads, respond to each other’s comments and posts, and share updates about how their pregnancies are going. Some of these sites are specifically targeted to babyloss moms, while others are general pregnancy support groups with sub-groups for people whose pregnancies ended in miscarriage or stillbirth. These sites function like closed support groups, in which members become acquainted with each other’s lives and experiences.

While these message boards are open to new members, they require registration and sign-ins. As a consequence, unregistered visitors cannot read messages posted there. These sites facilitate the sharing of babyloss stories online with generally closed communities of people who likely share this experience but find the websites through other means (e.g., after participating in general conversations about pregnancy or about women’s health).

While closed message boards and chat rooms offer various kinds of support, some babyloss parents seek to share their stories more widely. Some, for instance, create their own websites or blogs for narrating their loss experiences, which are often accessible to a broader reading public. Babyloss memorial websites, analogous to print scrapbooks or personal journals, include birth stories, photographs, and sometimes blog entries about the passage of grief over time. Many of these sites include guestbooks, enabling visitors to type messages of support or condolences. Some link to other babyloss memorial sites and personal blogs. In general, these memorial pages are solo-authored individual creations and few develop large followings or drew

6 Founded by Michael Berman, the author of Parenthood Lost, one of the books included in my print texts study in Chapter 3 of this dissertation. 85

many readers. A study of these sites performed by K. Nesbitt reported that even when freely available online, babyloss stories as told on memorial pages reach very few people beyond the network of grieving families who specifically sought them out (Nesbitt, 2004; p. 68). These babyloss memorial sites, then, can be understood as analogous in reach to the interpersonal circuits through which oral narratives of babyloss moved.

In this chapter, I explore the digital circulation of babyloss narratives against the backdrop of the increased circulation of babyloss narratives and more widespread attention to babyloss fostered by the print texts discussed in Chapter 3 by turning to an online repository of babyloss narratives available to the general public, Faces of Loss. Neither a solo-authored blog or website nor a message board, Faces of Loss is a place where babyloss writers can read others’ stories, submit their own narratives, and comment on published posts about miscarriage and stillbirth. In examining the narratives hosted on this site through the dimensions of identifiability and embeddedness, we come to understand some of the functions and purposes of communal storytelling in online spaces, an increasingly significant concern as people spend more and more time in digital environments. The stories shared on the site work to solidify a “babyloss club” that offers support and comfort to others who have endured pregnancy loss and testifies to the grief of babyloss to those who have not that is enacted by the interweaving of individual loss stories and collective loss stories. I focus on tellership and embeddedness here in order to understand communal storytelling actions, which ultimately aim at counteracting a prevalent realness problem (Layne, p. 17) that babyloss families in the United States encounter.

First, I will describe Faces of Loss, emphasizing how its different functions facilitate different aspects of storytelling. I’ll then engage the website and its paratext alongside a corpus of the posted stories. Attending particularly to the dimensions of identifiability and

embeddedness, I show how the individual and communal narratives of the site act together to speak-out and testify to babyloss as a real loss and a valid kind of grief. These actions undertaken both by individuals and the babyloss community as enacted by the website operate as a kind of counterstory that challenges dominant cultural narratives of babyloss as a “marginal and minor event” (Willer et al. 2019).

Joining a Crowd on Faces of Loss

The site I analyze in this chapter is Faces of Loss / Faces of Hope (hereafter abbreviated

FOL), a website where visitors can read stories submitted by others who have had miscarriages, stillbirths, or infant losses.7 It is free to enter and is, like many blogs, reverse order organized, meaning the post published most recently appears at the top. The website has a white background and each published post includes a photograph of the contributing writer with a label naming what kind of loss they’ve experienced.

I pause a moment here to call attention to the unstated yet still legible question of race and racial identities as they intersect with babyloss identity on the FOL website. In the very name of the site and the words of the founder, who wants to bring together many stories by many different contributors in order to illustrate the vast and diverse range of babyloss experiences. In

7 As is often the case in materials and texts about babyloss, various sub-categories are collected under what is meant by “babyloss” or “pregnancy and infant loss”: from miscarriage (defined in the US as pregnancy loss before 20 weeks’ gestation) to stillbirth (defined in the US as pregnancy loss between 20 weeks’ gestation and delivery) to infant loss/death (often defined in the US as death of a baby between delivery and 28 days of life). Categorizing these various gestational ages and putting them together makes a kind of argument that miscarriage is not a wholly different kind of loss than having a baby die a couple weeks after birth is. 87

fact, each contributor’s face is emblazoned at the top of their entry. In this way, a reader encountering a post is immediately interpreting information about the writer, likely without consciously recognizing the interpretation they are making, as regards the race of the person pictured. While it is beyond the data I collected for this project, it appears as though the ratio of white women to women of color is relatively disproportionate to demographic data as well as the higher incidence of babyloss amongst women of color’s pregnancies. The website’s silence about the intersectional nature of identity as it pertains to a woman’s socioeconomic class, race, nationality, disability, and sexual orientation functions to reinforce a homogenizing and whitewashing of babyloss experience, an oversight that advocates for reproductive justice insist should be recognized and counteracted. I address the question of maternal race later in this chapter.

FOL contains thousands of stories and also prominently displays a tab at the top titled

“Submit a story” to let readers know how their story can be featured on the website. Visitors to the site can use a search box to search for particular terms or subjects, and the stories themselves are each tagged by the writer, making it possible for readers to locate stories about certain kinds of losses and specific subsets of babyloss categories (such as miscarriage, infertility, 2nd trimester loss, etc.). Each post also has a place at the bottom where visitors can leave a comment.

I generated a corpus of 100 randomly selected posts on FOL to build a sense of the patterns across this sample of babyloss narratives. The individual stories in this corpus range in length from 309 words to 9,332 words. The entire corpus includes 146,144 words over 100 texts, making the average story length 1,461 words. I used #LancsBox to analyze and work across this dataset (Brezina, Timperley & McEnery 2018).

Before moving into an analysis of the individual stories, it is important to understand how

FOL functions as both a digital storytelling space and a public repository for personal narratives about loss. These dual purposes shape how individual babyloss storytellers come to tell their own stories. Consider, for instance, the “About” page created by the site’s founder, Kristin; the search features; and the “Submit a Story” page—invite certain kinds of storytelling by contributors and invokes two intended audiences: babyloss readers and the broader public. These two distinct reading audiences lead me to interpret FOL as a hybrid rhetorical space; the babyloss writers who submit their stories negotiate between offering personal narratives that represent their lived experiences of loss while at the same time becoming just another one in a growing crowd of bereaved parents.

A Disenfranchised Grief and the Realness Problem

In the aftermath of a miscarriage or stillbirth, bereaved parents often feel disenfranchised, meaning that their loss is not openly acknowledged or socially approved, making it hard for them to seek and receive recognition of their loss and thereby support (Cacciatore 2010; Doka 1989).

One study conducted by Brierley-Jones, Crawley, Lomax, and Ayers (2014) discovered that women who experienced stillbirths encountered social stigma that resulted in isolation, exclusion, and abandonment, which compounded feelings of shame. Those the bereaved women encountered, including medical providers, family members, friends, and co-workers would not grant their dead babies “full citizenship” or “personhood,” in turn denying the women’s maternal

identity (Brierley-Jones et al., 2014). The silencing and disenfranchisement of bereaved women are enacted through various layers of society, including procedural and legal—such as whether a woman whose baby is stillborn receives a birth certificate or can file for a tax credit, or how many days bereavement leave a father can take—communicative and emotional—such as interpersonal feedback about their experiences in social settings—and medical—such as the care and support the family receives during and after a loss, and how that medical care is delivered.

Although there have been improvements over the past few decades in perinatal bereavement support (Davis 2016), there remains a devaluing of babyloss that “stems in part from sexist perceptions of babyloss as a ‘woman’s issue’, and “master narratives about babyloss as a marginal and minor event” (Willer et al. 2019). In spite of increased visibility of babyloss in newspaper, magazine, and mass media coverage, the dominant cultural narrative remains that stillbirth and especially miscarriage (loss before 20 weeks’ gestation) is infrequent (Bardos et al.

2015), minor, and that the subsequent grief is or should be relatively short-lived.8 As J. Bueno, who specializes in miscarriage, writes, “Miscarriage tousles with ‘sort ofs’ and ‘almosts’ and ‘if onlys,’ teetering in between life and death, parenthood and childlessness, the public and private realms, mental and physical health. It seemed strenuous for people to accept the enormity of both the real and potential loss a miscarriage can bring” (Bueno 2019, p. xxvi). The “realness

8 Bardos et al.’s study of Americans’ perceptions about miscarriage also found that survey respondents believed that miscarriage only occurs in 5% of pregnancies, when the true figure is 15-20% of clinically recognized pregnancies miscarriage. Beyond that, participants also believed that miscarriages were caused by a stressful event (76%), lifting a heavy object (64%), previous use of an intrauterine device (28%), or oral contraceptives (22%), all medically inaccurate and, significantly, all of which in some way blame the mother for somehow causing indirectly or directly the loss of her pregnancy. 90

problem” (p. 17) of babyloss that L. Layne described in 2003 is still the reality for many whose pregnancies end in miscarriage and stillbirth.

A babyloss individual is mourning a baby no one else ever knew, a fact that compounds the “realness problem” of miscarriage and stillbirth, in which “the realness of the baby, the mother, the event, and the legitimacy of grief are simultaneously challenged” (Layne, p. 17).

Because of this cultural norm, parents are first encouraged to identify strongly with their unborn babies, but once a pregnancy ‘fails,’ their babies are denied. Yet the experience of babyloss is uniquely future-oriented. The significance of babyloss is often ignored because it also entails 1) a loss of the future; 2) a failure to protect the baby; 3) a loss of parental role; and 4) an unseen and often unacknowledged loss (McHaffie 2001, quoted in Mander 2006, p. 12). This lack of material and historical evidence of their babies’ existence is a major challenge to describing a loss that others can see and understand. For Black women, indigenous women, and women of color, this disenfranchisement is often even more stark, as ideals of womanhood and motherhood are widely inscribed through whiteness. Racial and class factors play a role in whose grief is seen as more or less valid, and as such, cannot be separated from the broader question about how babyloss identities are framed and presented on the website.

FOL as Online Support Group

In the face of still widespread cultural misunderstandings about the frequency, possible emotional impacts, and causes of miscarriage and stillbirth, one purpose of the FOL website is to provide a supportive space for babyloss parents who are feeling alone and unsupported. The

founder of FOL, herself a babyloss mother, describes the website as in terms of a commonplace, like an online support group. On the “About” page, the founder describes FOL as

a place for us to come together and share our stories and our faces with others who may

be looking for reassurance that they are not alone. My hope is that Faces of Loss, Faces

of Hope becomes a place for new members of this “babyloss club” to come and read

hundreds of other stories, and see hundreds of other faces like theirs, all in one place.

(“About”)

An exigence is, as Carolyn Miller argues in “Genre as Social Action” (1984), “a set of particular social patterns and expectations that provides a socially objectified motive for addressing danger, ignorance, separateness” (p. 158). The exigence identified here by the site’s founder is confronting perceived “separateness.” For someone newly bereaved and feeling isolated with their grief, FOL is a place where they can find stories that resonate with what happened to their baby and “see hundreds of other faces like theirs” (“About”). Finding one’s group for support and solidarity, for making sense of what has happened, invites comparison to mutual aid groups and support groups such as Alcoholics Anonymous and in-person pregnancy loss support groups.

Literature about support groups demonstrates the importance of considering the roles that storytelling plays in individual and collective identity formation and healing. Scholars have attended to how literacy practices emerge and are enacted within support groups (Daniell 2003;

Holland et al. 2001); the centrality of narrative practices to group identity formation (Pollner and

Stein 1996; Weegmann & Piwowoz-Hjort 2009); and how stories told in support groups help individuals in healing and recovery (Pennebaker 1997; Frank 2010). The social nature of telling stories of the self in mutual aid groups is instrumental in cultivating group identity, and in-group belonging requires negotiation between an individual identity (the specific person) and the group

identity (what it means to be an alcoholic, a widow, a babyloss parent, for example). As

Weegman and Piwowoz-Hjort find in their analysis of storytelling in Alcoholics Anonymous, individual identities are not co-opted or determined by the group, but “but rather are helped to fashion and model an emergent identity on a shared cultural capital” (2009, p. 281) in the form of narrative plots. “The ‘AA/Fellowship route’ offers a set of principles and narrative forms that have the attraction of consistency and coherency… [and that] participants find that what can be called ‘Fellowship narratives’ and structures assist them greatly in appraising the past, re- building their lives and finding direction” to move forward (Weegmann & Piwowoz-Hjort, p.

281). In part, becoming a member of a community like AA or a pregnancy loss support group means learning to tell one’s individual story in a way that conforms to group expectations as performed in certain narrative forms. Aspects of individual identity-making work in in-person support groups is done within practices like shared narrative mapping, worldview affirmations, and emplotment that help participants make sense of life events.

Narrative practices like those enforced in support group settings help promote a feeling of belonging, which is a key aspect of identifying as and identifying with (Brubaker and Cooper

2000) that babyloss narrators do in these stories. The concept of belonging is central to the rhetorical work FOL is doing, as bereaved parents start out with the fact of their babies’ deaths and feeling alone, then find others to whom something similar happened. Reading those other stories and “see[ing] hundreds of other faces like theirs, all in one place” (“About”) engenders a sense of belonging through identification and helps the new “club member” (“About”) identify themself as a parent to a “child in mind” (Bueno). Finally, the site’s founder encourages those who have found their way to FOL to show their own faces, to identify as a babyloss parent in order to bear witness and push back against cultural denial of that identity. Rather than coming to

FOL with a certain identity already established, babyloss readers are welcomed in and told they belong, and that belonging can be further determined in subcategories of specific kinds of losses.

In this way the site encourages visitors to identify as a member of the loss community and also to identify with others who have had the same kind or similar kinds of losses.

Visitors to FOL can perceive shared or differing identifications as they scroll through

“other faces” like theirs and dissimilar to theirs, as far as race goes. Snapshot images of each contributor are typically in color, not black and white, and therefore encountering each image invites identification through race, even as race goes virtually unmentioned on the site. As advocates for reproductive justice point out, a dearth of attention to how race intersects with reproduction prevents us from seeing the ways in which women of color's stories have been left out or ignored in these discussions. In a racist society, the state is more invested in some women’s ability to conceive, bear, and raise children than in other women’s ability to do these things, and the main delineation between those two groups of mothers is their race. Pro-natalist measures have always supported “white, middle-class abled women” in their goals to become parents, whereas Black, indigenous, brown, disabled, or lower-income women’s fertility is actively discouraged through a variety of measures, and at some points in history, has been widely and non-consensually controlled via slavery, unagreed-to sterilization, forced IUDs, removal of children from their families, etc. (Ross and Solinger, p. 19). Anti-natalism still plays out through doctors and others involved in conversations about reproduction, sterilization, prenatal and postpartum care, and quite literally in discriminatory medical treatment of women of color compared to their white counterparts.

Black motherhood and the value of their babies are tacitly and widely seen as less valuable than white babies and white mothers. This discrimination spills over to impact the

social and rhetorical project babyloss mothers face in talking about their pregnancies, particularly for Black and brown women whose babies have died. Racism and racial injustice inevitably impact how women tell their stories, being aware of the pervasive, longstanding, and often ignored racism intrinsic to health care specifically and cultural differently of telling their stories. Ross and Solinger argue that white motherhood has been the “fundamental creative symbol of the white nation,” and unacknowledged whiteness relies on non-whiteness, so that when a Black woman who has endured pregnancy loss steps up to talk about what she lost, she encounters the systemic and pervasive stereotypes about Black mothers being unfit.

“Conservatives [have] packaged the sexuality, reproduction, and maternity of women of color as transgressive and argued that the bad choices of these women disqualified them from being modern women and full citizens (Ross & Solinger, p. 50). Black women have been portrayed as

“potentially too fertile and [thus have been] likely targets of punishment for reproducing while poor” (Ross & Solinger, p. 50). The deep history of prejudice against Black people in general and Black women in particular helps us understand why listener perceptions of a bereaved parent’s race matters. Someone might choose not to talk about their racial identity in order to shield against or avoid possible racist judgements. Shedding light on the question of race through a reproductive justice approach, therefore, broadens the question of who is easily welcomed into the babyloss club on FOL, who finds faces that look like theirs, and perhaps whose faces (and therefore whose stories) are missing. A color-blind approach to showing “faces of loss” for visitors to identify with without an acknowledgement of how race plays into motherhood and therefore also into bereaved motherhood can unintentionally reinforce racial injustice and also

absolve society’s inattention to disparities between medical, social, legal, and political treatment of white women and non-white women.9

Bringing a visitor to the website into the support group community and reinforcing that they are not alone or separate then culminates in how FOL presents individual stories in concert with each other to non-babyloss readers. Because of this exigence, research on support group storytelling in face to face meetings cannot fully account for how group identifying through stories happens on FOL. There is tension between individual and group narratives that is evident in how the dimensions of identification and embeddedness play out on sites like FOL, where not only members but non-members of the “babyloss club” may visit and listen in. In contrast to an in-person support group meeting, FOL writers narrate their experiences without interpersonal feedback from other group members like nonverbal cues (nodding, smiles or frowns, tone of voice, etc.) and turn-taking as occurs in a synchronous conversation. In addition, FOL writers offer their likenesses—each story is posted with a headshot of the writer, which will be discussed in the next section—and stories to circulate online. Attention to these aspects of storytelling on

FOL highlight the hybrid nature of talking about babyloss online. In fact, the highly identifiable nature of each post, which lists particular details including the contributor name, baby’s name,

9 There are many groundbreaking new books and articles centering on reproductive justice to turn to for much more in depth criticism and analysis, including Undivided Rights: Women of Color Organizing for Reproductive Justice by J. Silliman, M. Fried, L. Ross, and E. Gutierrez; Reproductive Justice: The Politics of Health Care for Native American Women by B. Gurr; How All Politics Became Reproductive Politics: From Welfare Reform to Foreclosure to Trump by L. Briggs; Our Bodies, Our Crimes: The Policing of Women's Reproduction in America by J. Flavin; Beggars and Choosers: How the Politics of Choice Shapes Adoption, Abortion, and Welfare in the United States by R. Solinger; and Shattered Bonds: The Color Of Child Welfare by D. Roberts. 96

date of birth, state or country of residence, and a photograph, is markedly opposite to the private nature of in person groups, especially 12 Step Programs like AA.10

Because of the ways that individual and group identifications are developed through storytelling in support groups, it is unsurprising to see the emergence and success of collective narrative spaces like FOL. A digital collective blog like FOL is a hybrid storytelling space, where women can collectively generate experiential knowledge that counters a dominant narrative by telling their own stories, and the presence of others also telling their stories is authorizing as it is in support group settings. As in AA and other mutual aid groups, the stories told by members touch off what Sacks named “second stories.” Each telling invites another person’s story by describing one’s own experience and indicating openness to sharing the burden of babyloss. Although there are significant differences, storytelling within face-to-face support group settings provides a useful lens for reading women’s stories on FOL because online blogging communities have in many ways supplanted in-person pregnancy loss support groups

(Layne 2003, p. 237).

Babyloss storytellers on FOL are required to include the date of their miscarriage or stillbirth, which in turn establishes a concept about babyloss club newcomers and old-timers, an element of storytelling in support groups like AA. Interactions between those who are new to the group and those who have been members for a long time may be unwritten or informal, as on

FOL, or established, as in AA, but either way, storytellers who are further along on their grief journeys give advice and encouragement to readers who are more recently bereaved. Similarly,

10 Indeed, AA and other 12 Step groups supporting members through addition recovery operate on the concept of confidentiality, as heavily implied by the name Alcoholics Anonymous, Overeaters Anonymous, Narcotics Anonymous, Sex Addicts Anonymous, etc. 97

in a study focused on narratives told at in-person Alcoholics Anonymous groups, Pollner and

Stein argue that “at the threshold of an unfamiliar social world, newcomers may seek knowledgeable or experienced others for orientation, information, and advice,” and that

“oldtimers, pros, and veterans, in turn, may draw upon their personal experience to offer

‘narrative maps’ of the new psychosocial geography” (p. 204). Those narrative maps then can impact newcomers’ decisions, actions, and discourse. The stories of those whose grief has had time to temper and deepen can help new attendees figure out how to narrate their own stories.

One FOL writer, Lee, puts it this way:

Now I’m on land that hasn’t been mapped before with no terrain to associate. But the

weird thing is that others are here on this unmapped land. Even in the short time since we

lost Faith, I have found myself in the singularly painful and loving space where I must

share that Faith is gone and in the next breath the person I am talking to shares their own

loss. It’s painful and loving and intimate and horrifying all at the same time.

Lee at first believes herself to be on uncharted land, but then unexpectedly locates others who are there, who share “their own loss” stories with her. In submitting her babyloss story to be included on FOL, Lee has chosen to add her story to a searchable public forum, showing some of how she has mapped her own new life in the context of a storytelling space where many others are doing the same.

Individual stories told in community spaces, like Lee’s, cannot be adequately understood if they are seen as discrete, stand-alone narratives. Because they emerge and are told in mutual aid support contexts, it may be useful to understand them as individual stories interwoven with the narrative practices developed within particular discourse communities. For example, looking at Alcoholics Anonymous, social psychologist I. Arminen argues that “the narrative perspective

is important, but the focus on individual stories may not be sufficient as the crucial part of the mutual aid takes place through members’ sustained effort to communicate with each other, and to reshape their narratives so that they also help others while helping themselves” (2004, p. 320).

Consequently, these two aspects of storytelling that are significant to support group storytelling cannot be separated: narrating one’s own story and doing so in a way that helps other members.

Anthropologist L. Layne (2003) has also made similar insights about pregnancy loss support group storytelling in her study of pregnancy loss in America. Layne describes the rapid rise of in-person pregnancy loss support groups and with them support group newsletters.

Newsletters printed and mailed out by local and national support organizations invited babyloss parents to submit poems, memorial notes, and brief stories to be printed and circulated among those signed up for the support group member mailing list. These newsletters function similarly to websites like FOL. Writing in the early 2000s, Layne gestures toward the pregnancy loss support groups’ shift online, presciently acknowledging that the “diminution of face-to-face peer-based pregnancy loss support” (p. 237) is partially caused by the invention of Internet-based support, although her descriptions of online platforms is limited to “moderated chat rooms” (p.

237) rather than the now-ubiquitous social media and self-publishing platforms such as individual and collaborative blog spaces, digital zines, and other multimodal digital spaces for narrative making and circulating.

All of these storytelling spaces—in person support groups, organizational newsletters, and online blogs like FOL—invite “second stories” (Sacks, 1992), and what Ochs and Capps term “touched off tellings” (2004). This idea of second stories or touched off tellings helps to name the phenomenon of hearing a story from someone else that inspires the listener to then tell

their own similar story. As Sacks describes, telling a story to someone is in part about narrating something that happened to us that we think is unique:

though I start with a possible sense of uniqueness I can solve that uniqueness problem by

just telling somebody else the story… and they will simply come up with one if they have

one. And not only will they come up with one if they have one, they will often know one

that somebody else has come up with. The consequence of that is the familiar

phenomenon of ‘Until I had this trouble I didn’t think anybody had it. When I had it it

turned out that lots of people have it.’ One finds, when something happens to one, that

ranges of things you never knew existed exist, and that lots of people turn out to be in

exactly the same situation.” (Sacks 1992, qtd in Ochs & Capps, p. 209).

Many mothers whose babies die before birth initially believe that what they are going through is rare, yet when they speak up and tell another person about it, they discover many others they know have already had miscarriages and/or stillbirths. FOL embraces the telling of second stories. One FOL writer puts it this way: “We all have the same, yet different stories to tell”

(Brittany 2). FOL writers “tell somebody else the story,” and in doing so their storytelling invites others to come forward with their own stories. Thus one of the goals of doing so is to battle against the loneliness of being bereaved. As the site’s founder wrote, after her baby’s death,

I felt completely and utterly alone. I felt like some sort of freak of nature. This sort of

thing doesn’t happen to healthy, normal people like me, I thought. But I was wrong. After

spending hours and hours scouring the internet for other stories like mine, I realized

pregnancy loss is more common than I ever thought. (“About”)

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In submitting their stories to a public site for consumption, FOL writers are adding their stories to the chorus of others to show that there are “lots of people” “in exactly the same situation” as they are (Sacks).

FOL writers describe their personal motivations for writing to and for an audience of other grieving parents, in order to support and create solidarity. There are explicit ‘shout outs’ to other babyloss mothers who may at some point read these narratives. For example, Lindsay says that, although she had an amazing support system in real life, she is glad that she found her way to FOL, “where I could read other mothers’ stories and share my own. Losing a child through miscarriage is so lonely” (Lindsay). Sara, who had one stillborn son, writes, “I reach out to mothers who are experiencing the heart wrenching chapter of their lives and I give them the hope

I had to find myself.” Tina writes that she shares her story “for other mothers out there who might feel alone.” FOL writer Jeanine explains the link between hearing and telling stories eloquently after her daughter was stillborn: “I have talked to a lot of people who have experienced this in the last weeks and it seems to be way too many. This shouldn’t be so uncommonly common. But in some weird way, it helps. I want to hear their story and I want to tell the story of Diana” (Jeanine). Many FOL babyloss writers allude to their own desire to write in response to the stories they have read, describing their story submissions as a contribution to in turn support others grieving pregnancy losses.

Due to the touched off tellings and ongoing communal narration, FOL is not wholly different from in-person support groups; indeed, an online collective blog is in some ways more like an online pregnancy loss support group than it is like one of the books described in the previous chapter. Writing and speaking in person and online both rely on discourse practices and conversational patterns, the bridging of which has received much academic attention: from

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discourse practices on message boards (Bar-Lev 2008; Paulus & Varga 2015) to the benefits of blogging (Chung & Kim 2008) and performances of self on personal webpages (Warley 2009).

While message boards most directly replicate many of the social interactions of in person support groups, Shirly Bar-Lev explains that the formation and efficacy of what she calls “emotive communities” in an online HIV/AIDS support group is largely accomplished through the performance of stories “in a disembodied medium” which thereby “demands an effective intensity that enables actors to experience and express a wide variety of emotions, as they critically evaluate the taken-for-granted emotional scripts available to them” (Bar-Lev 2008, p.

510). Bar-Lev argues that, rather than seeing the Internet as preventing authentic performance of self, it is actually the disembodied nature of online interaction that affords “emotive community” to develop. Indeed, L. Warley, in her research about self-representation on personal webpages, states that autobiographical performances online constitute a different genre because “of how

[self] is reproduced, transmitted, and stored” (2009, p. 26), and that digital spaces enable an interactivity that is a prime example of “self-in-relation.” Similarly, S. Smith and J. Watson, in

Getting a Life (1996), argue that “autobiographical narrators move out of isolation and loneliness into a social context in which their stories resonate with the stories of others in a group” (1996, p.

15), illustrating the powerful possibility of online storytelling support, which can occur over physical distances as well as over temporal distance. Storytelling online creates a participatory genre, argues T. Erickson: “What is important, in many cases, is the communication itself—the shared informational artifact that is created by the participants—rather than a real or perceived bond among the participants in the communication” (1997). The idea of belonging through identification with and identification as (Brubaker and Cooper 2000) plays out through online community spaces like FOL even if the members of that community are otherwise unconnected.

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Speaking Out (Together) on FOL

While the pregnancy loss awareness and support community has made significant advances in bringing miscarriage and stillbirth into the public eye over the past several decades, there are still widespread public misconceptions about the prevalence and emotional impact of pregnancy losses; support organizations continue to work to raise cultural awareness around miscarriage and stillbirth. One recent study that is particularly interesting for my work with babyloss stories online is an ethnographic and communication theory study of a public pregnancy loss remembrance ritual organized by Now I Lay Me Down to Sleep (NILMDTS). In their narrative ethnographic study of a babyloss memorial walk, co-authors E. Willer, E. Krebs,

N. Castaneda, K. Drazner Hoyt, V. Droser, J. Johnson & J. Hunniecutt argue that babyloss families need collective ritual to counterstory the disenfranchisement of their grief. In “Our babies[‘s] count[er story]: A narrative ethnography of a baby loss remembrance walk ritual,” the authors find that participants in the remembrance walk wove together a “communal loss narrative” that was inclusive and collective, and created it together with their individual grief narratives. The two are not actually separate, though, literally or figuratively. In their participation in the communal event, babyloss parents represented and performed their own bereaved identities and remembered their specific babies through visual imagery and stories, yet that was made possible by the organization. “Although [families’ babyloss performances] were highly individualized, when they were viewed collectively, their visual impact was striking and therefore in line with the event’s community narrative” (Willer et al., p. 9). Thousands of babyloss families can counterstory the “societal master narrative” of babyloss as a “non-event”

(p. 3), which invites their personal stories and magnifies them by putting them on with a large

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group. The event “transform[s] isolated grief and celebration into a collective experience. This community-based, highly-public form of remembrance gave families who have lost a baby support that they likely rarely (perhaps never) had received with such force and on such a large scale” (p. 9).

By gathering and performing a collective ritual to remember each baby and all the babies represented there, families who participated in the walk combine their personal story of loss with the stories of others to make a communal narrative that may impact public opinion about babyloss. The collective ritual possesses the “potential to (re)story the family vis-à-vis the dominant cultural narrative” (Willer et al. p. 4). Events like the walk become a collective ritual for the participants to “engage their experiences as valid, meaningful life occurrences that deserve concerted attention and action” (p. 4). By coming together, the individuals who participate in the remembrance walk, like those who submit their stories to FOL, strengthen their rhetorical persuasiveness by joining in concert with others’ stories.

The cultural work being done by babyloss storytellers on FOL is an instantiation of what

T. N. Dubriwny (2005) describes as consciousness-raising through collective rhetoric.

Dubriwny’s article highlights the Redstockings’ Abortion Speak-Out of 1969, where dozens of women spoke publically about their own experiences with abortions; Dubriwny argues that “the telling of a series of personal narratives” with listeners and co-tellers worked to forward experiential epistemology to argue for social change (p. 416). The women’s speak-out was rhetorically powerful because no one rhetor was making the case for women’s right to abortion.

Instead, the consciousness-raising happened across many women telling their stories together, with one person taking the stage to tell her story with audience participation, interruptions, touched off tellings, and rhetorical asides. Dubriwny writes,

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the development of a collective rhetoric is a process with an epistemological core, a

process that persuades listeners and speakers alike by empowering them to seek

knowledge in their own experiences. The performance of speak-out thus encouraged the

creation of new knowledge drawn from a synthesis of the participants' experiences.

Although each participant's experience was materially different, the process of speaking

their experiences attributed similar meaning to the experiences, a meaning that stressed

women's right to have an abortion. (2005, pp. 416-17)

The telling of what happened in one’s life within a communal space can transform “experiences that once seemed personal [into] universal” (Dubriwny, p. 417). This assertion about the power of speaking out and creating “new knowledge drawn from a synthesis of the participants’ experiences” (p. 417) also applies to the collective rhetoric enacted by the creator of FOL and the writers who speak-out on the site, albeit in digital form instead of in person.

Although the exact content of the women’s stories at the abortion speak-out differs from the content of women’s stories as they are told on FOL, the rhetorical project the two communities of women undertake share two main characteristics that I will discuss in this chapter: touching off / inviting stories by and from others with similar shared life experiences and seeing the collective narrative as doing something in the world: bearing testimony. The stories on FOL humanize an otherwise sterile or dehumanized report. As Eunah, a FOL writer, explains,

I am one [of the one in]… 200 mothers that deliver a stillborn baby every year. That is

1,500 every year in Canada… That is a lot of dead babies. How terrible but how

statistically factual and dry numbered. It is statistics. We all boil down to a statistic; that

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is one way of seeing it. Of course it takes away the horror of what happened because I’m

just a number and this happens quite commonly enough.

Eunah writes her story and submits it to FOL to humanize and speak-out about the individual impact that babyloss has on people—she rejects the notion that her experience can be adequately understood by statistics, because only looking at numbers “takes away the horror of what happened.” By writing about their individual stories and then sharing them online, Eunah and other FOL mothers give credibility and weight, put faces to, a common and commonly neglected kind of loss. Though each one is only one, by telling their stories in concert with others, the impact may be multiplied, “taboos will be broken, and lines of communication will be opened”

(“About”). Like the women at the Redstocking Speak-out and those who participate in the remembrance walk, FOL writers like Eunah tell their individual stories of loss in the collective context of many other stories, which strengthens the overall impact.

Functions of Identifiability on FOL

The identifiability of the women whose stories appear on FOL is constructed visually and textually, but also mediated through categories within the collective. Similar to participants at the

NILMDTS remembrance walk and the women who spoke at the Redstockings’ Speak-out, FOL writers show their faces and tell their particular stories, unlike the babyloss parents whose stories appear in print texts and are mediated through the author/researchers’ presentation. Unlike in many of the print texts described in Chapter 3, babyloss writers on FOL are not anonymized.11

Each contributor to the site is identifiable as a specific individual because of the very format of

11 Some of the contributors to the site include their personal website or email address for visitors who want to reach out via those means. 106

the site, which accentuates individual identities through the use of personal photographs, nametag labels, and highly personalized and detailed accounts about each loss. Along with the contributor’s real name, the site also includes the name(s) of the baby or babies who died and their dates of birth, and the writer’s place of residence.

Banner at the top of Facesofloss.com

Figure 8 Yet even as each entry foregrounds individual contributors, the landing page of FOL promotes a collection of faces that make up the babyloss community it brings together. Visually this starts with the impact of the images that visitors encounter: headed with a banner of women’s smiling faces (see Figure 8). All four of the women pictured are photogenic, with beautiful hair and bright eyes.12 The central circle of the five is outlined in blue and does not

12 The modelesque headshots across the top of the website brought to mind the question of whether the circular images, so coin-like in their shape and how they are laid out in a row, perhaps show the same women’s faces on the flip side. But on the unseen side, the same women would be instead unsmiling, grief-stricken, eyes red rimmed, or mouths gaping in a silent wail. The impact of the photos as they appear on the actual site, however, is of beautiful, attractive young women presenting images that seem to reflect 107

frame a woman’s face but instead a grey heart icon with white infant footprints inside it. The row of faces makes it appear as though the women are gathered around an absence, a mark or symbol of babies. The image of baby footprints on the heart is a common metaphor for the impact a miscarried or stillborn baby leaves on their family members.13 The visual impact of this banner is that the babyloss women are brought together around the common experience of having a baby whose footprints are left only on their hearts.

In contrast to the unnamed women whose faces appear at the top of the webpage, the photographs of individual writers are labelled and named, although in a distinct way that reinforces communal babyloss identity. Each woman’s photograph appears at the top of her post, yet before the given name of the writer is revealed, the caption below her photograph reads “I am the face of” and then the particular type of pregnancy loss the writer endured. This use of anaphora, or the repetition of the same word or phrase at the start of each sentence, emphasizes a particular point. In this case, the repetition of “I am” on each published story puts the focus on representation of specific categories of babyloss rather than on the storyteller herself.

‘faces of hope’ more than ‘faces of loss.’ While the site purportedly shows real life women in the throes of grief, the photographs that appear at the top of the blog’s homepage look like professional headshots.

13 Footprints are often one of the few mementos that bereaved families take home with them from the hospital, and this practice parallels the ubiquitous baby footprints taken at live births as well. 108

Individual post image from Faces of Loss.

Figure 9

For example, in Figure 9 Camellia’s photo, framed to look like a Polaroid snapshot14 isn’t labelled with her name. Instead, she is introduced as the “face of late miscarriage.” On FOL, the repetition of “I am the face of” illustrates how individual identity is integrally interwoven with group/collective identification. Babyloss identity is articulated through the introduction of individuals via the categories of loss they had.

The photograph shown above in Figure 9 raises the consideration of race in how reader engage with these stories and their narrators. For while the race of the writer, Camellia, is not named or commented upon in either her story or in the comments, clearly the visual representation of her face enables a legibility of skin tone and racial features that readers interpret. Camellia’s skin, hair, and eyes appear to be dark and so may be read as indicating non- whiteness. How might avoidance or silence on racial identity impact the way a story by a black

14 Like most blogs, posts appear in reverse historical order, meaning from most recent to least recent. At the time of this writing, the top story is from 18 May 2019. 109

woman is read and valued, and just as importantly, in what ways does a lack of acknowledgement of race as one element of maternal identity perhaps reinscribe or reinforce racial stereotypes and reproductive injustices that more heavily impact bereaved women of color than bereaved white women? The stories themselves are also largely avoidant of naming or discussing race; entering search terms in the FOL search bar such as “Black” and “African

American” does not shed light on the issue. “African American” returns zero results in the thousands of entries, and “black” returns all stories that include the term but a cursory look through finds that it isn’t usually referring to mother’s or infant’s race, but to other items. This makes it frustratingly difficult to take race into account as an aspect of babyloss identity creation and performance. While I do not answer these questions in this dissertation, I raise them here in order to point to the complexity of babyloss as a social and cultural phenomenon, which implicates a host of social issues that coalesce around reproduction and reproductive justice.

If a visitor scrolls quickly down the webpage, they pass one snapshot after another of the bereaved contributors, which creates the feeling of a gallery of individuals each of whom appear in the company of these other bereaved parents. It is only by slowing down and clicking “Read more” on an entry that the entire story is legible. Because of this navigational format, each post is simultaneously very individual in that it presents the person’s unique identity and the name and dates of her dead “child in mind” (Bueno) while at the same time standing in as representation of the “face of” a particular kind of loss; this paradoxically results in a sense that a specific woman’s face, identified and recognizable as a particular person, stands in for a type.

The rhetorical impact is similar to that described by Willer et al., of the individual loss narratives each affecting readers, and the communal nature of how the site works as a collective repository weaving those together with the group-wide communal loss narrative. In its very name

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and also in service to both of its rhetorical projects—of supporting babyloss parents and breaking taboos—FOL puts faces on the very private experience of babyloss, illustrating the normalcy and beauty of the women whose babies died who share their stories here. The website is archival, in that it is like a collective scrapbook where digital traces of these babies’ lives can remain; each of the pages contains a real, particular, unique baby and babyloss experience, but the collection of stories has a greater impact than any one story alone could.

The site works toward the related projects of containing individual stories and leveraging them to raise consciousness about babyloss as a phenomenon, and therefore the function of identifiability operates completely differently than it does within the print texts. On FOL there are the photographs, the real names, the sociable internet interactions (comments, links, inclusion of babyloss writers’ email addresses and other webpages), and invitations to readers to tell their own stories. All of this contributes to very different stance around identifiability than in earlier instantiations of BL storytelling, in which babyloss storytellers told their stories and then they were largely anonymized and put in service to the author’s points, often subsumed and anonymized. The more personal and identified stories on FOL are a factor of storytellers wanting to tell their own narratives, of generally growing awareness of babyloss, and the widespread availability of the internet, where more people can find a platform to share their thoughts and ideas.

Countering the Realness Problem, Together

Beyond just offering support and solidarity to each other in an in-group, babyloss narrators on FOL also respond to an invitation to collectively bring “awareness to the issue of

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pregnancy/infant loss” (“About”). In turning the focus from combatting loneliness/isolation for the individual and validating the broader babyloss community to performing babyloss identity to

“the world” (“About”), FOL’s founder invites collective consciousness-raising action. Like the feminist women who spoke at the abortion speak-out of 1969 and the participants in the

NILMDTS remembrance walk, writers whose stories appear on FOL offer their voices that, together, are louder than they would be alone. That storytelling is not simply to have one’s own story heard and seen, but is also seen as significant in its contributions to a collective ritual or meaning-making operation: to describe pregnancy loss and portray it as a real loss, worthy of acknowledgement, support, and validation from the world at large, not just from the babyloss community.

Implicit in Kristin’s statement is the rejection of any notion that we should be “afraid to show our faces and tell our stories.” Kristin implies that FOL contributors are courageous in telling their stories in public spaces. The act of doing so, in fact, changes the shape of the world:

“barriers will be broken down. Taboos will be broken, and lines of communication will be opened” (“About”). The telling of a babyloss story could actually reconfigure how stories move in the world and move people, the website proposes. Kristin invites would-be writers to “join the movement,” a term that suggests advocacy, a choice to become a part of a collective social action to empower and improve current conditions.

On the “Submit a Story” tab of the website, potential contributors are told, “By submitting your story, you are telling the world, ‘I am not ashamed.’ Thank you for joining the movement and letting other women know they are not alone” (“Submit”). This reiterates the group solidarity aspect of FOL as a website and the world-facing collective argument for a counternarrative that argues for the validity of babyloss grief. Each of the stories that is presented

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on FOL does dual work in narrating pregnancy loss experiences: generating a digital support group at the same time as finding “strength in numbers” (Willer et al., 2019, pp. 8-9), the CLN and individual loss narratives “comingled to create an inseparable counternarrative” (p. 12).

Each of the posts published on FOL are distinct snapshots of one person’s story of babyloss, discrete from each other. However, the impact of a story cannot be fully excised from the stories that surround it nor completely isolated from the way it was invited by the archive/repository. Each of these stories simultaneously present an individual loss, but taken together they appear within the collective context of the thousands of other stories on the site.

Many of the babyloss writers address the collective nature of FOL as a site for storytelling and public testimony. For example, Amanda 2 had a very early miscarriage, and she writes that “for so many mothers and fathers out there,”

The world isn’t aware that they are hurting. There’s no obituary or service to make it

known there are broken hearts. And once people do know, they seem to feel so awkward

and uncomfortable to discuss it with the grieving parents that it is still buried away. This

is no one person’s fault. I myself have actually said the words, “It’s just awkward to just

come out and say oh by the way, I had a miscarriage.” This is just what we have grown

accustomed to.. [sic] but we have to change this. This shouldn’t be taboo. This is a loss.

There are tears, devastation, and grief just like any other loss. No one should have to go

through this alone. Am I saying this loss is equivalent to the loss of a child who was on

Earth at one time or the loss of a parent or spouse? No. What I am saying is the life of

that baby mattered, whether they were ever actually on Earth or not. And it’s not just the

people around us that need to break down the walls. We, the grieving parents, need to do

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it, too. We need to talk about it. We need to let people in. We need to not compare our

stories to others. (Amanda 2)

This extended passage near the conclusion of Amanda 2’s narrative makes an interesting claim: that the “world” isn’t aware of the pain that bereaved parents are experiencing, that babyloss shouldn’t be “taboo,” and that the loss is real. Yet Amanda 2 is careful not to make grand claims about the magnitude of babyloss, as she asks a rhetorical question: “Am I saying this loss is equivalent to the loss of a child who was on Earth at one time or the loss of a parent or spouse?

No.” This is intriguing because there is nuance in Amanda 2’s argument for breaking taboos and acknowledging the realness of this kind of loss, even as she concedes that her miscarriage at just a couple weeks’ gestation is not “equivalent” to other kinds of deaths. Amanda 2 is also careful not to cast too much blame on non-babyloss people in general and those who know her in real life. She writes that in the immediate aftermath of her miscarriage, her “students needed [her].”

Indeed, she writes, “Many had no idea I was even going through this (and please don’t take it personally if you’re just finding out now.. [sic] I’m still learning how to speak my story aloud)”

(Amanda 2). Amanda 2 then asserts a communal responsibility on the part of babyloss individuals, repeating “we.” “We, the grieving parents, need to do it, too. We need to talk about it. We need to let people in. We need to not compare our stories to others” (Amanda 2).

Members of the babyloss community, in other words, cannot sit back and wait for non-babyloss people to approach and attempt to empathize. Amanda 2 is issuing a charge, a call, for babyloss people to step forward to “talk about it,” “let people in” and not “compare our stories to others.”

The onus, Amanda 2 implies, is on babyloss people to risk opening up and speaking out, which she does in submitting her story to FOL. Amanda 2 clearly has responded to the call of the FOL

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submission page in “joining the movement” (“Submit”) to raise awareness and open communication about what babyloss means for those who go through it.

Raising Awareness by Sharing a “Child in Mind”

The concept of a “child in mind” (Bueno) helps as a metaphor for understanding what was lost as well as the continued psychological existence of a baby even after a miscarriage or stillbirth. Psychotherapist J. Bueno coined the term “child in mind” in The Brink of Being (2019), which argues that the grief some people experience after miscarriage is more complex than is typically accounted for. Seeing miscarriage as just the end of a pregnancy doesn’t explain the depth and duration of grief that some babyloss individuals experience. As I showed in the introduction when defining “babyloss,” expectant parents often have already been cultivating the psychological existence of a baby who will be born and grow into a child. The process of imagining one’s future offspring, whether not yet conceived or, in the case of early pregnancy, creates dreams, hopes, and expectations for the future. The “powerful existence of a child held in mind” (Bueno, p. 33) is powerful because of love and anticipation, not because of the age of the embryo or fetus. This metaphor shows how expectant parents imagine the future: what the baby will look like, how they will grow, what their presence will be like in one, three, five, years, into the perpetual future. Love for a “child in mind” means that a positive pregnancy test is not the beginning and therefore, when that “child in mind” dies, so does a lifetime of future memories that were going to be made together, that indeed, psychologically speaking, already existed.

Significantly, then, a baby who was “held in mind” before it is conceived can also be “held in mind” after the miscarriage or stillbirth; the idea of babyloss writers sharing their “child in mind”

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opens up new ways of comprehending what has been lost and why some parents choose to tell their stories publically.

Bringing the concept of a “child of mind” to my examination of FOL babyloss narratives provides a useful framework for seeing the argument that narrators are making to argue against the invalidity of their grief. In the babyloss stories on FOL, a writer can describe not only the material and embodied things that happened during the pregnancy, how things went wrong, and what followed. They can also share the dreams and visions and hopes that they had held for the future. The writer can use the baby’s name like she seldom can in speaking out loud with others.

She can write about what she thought life with them would have been like. In doing this, the narrator gives readers insight into the realness of the baby who has died, fleshing out what would have been.

Individual babyloss writers describe their babies using language that is evocative of the

“child of mind” Bueno proposes. For example, Amy, puts it this way on FOL:

Our family will forever be incomplete. Ollie’s physical presence will always be missing,

but he will always remain our very much loved, oldest child. We’ll miss him on holidays,

during family events, in family pictures, on Mother’s Day, on Father’s Day, and

especially on [his birthday]. We’ll always miss him as our baby, and we’ll also miss him

as the age that he would have been. We’ll wonder what his personality would have been

like, what his interests would have been, and what he would have looked like as he grew

up. (Amy)

Amy shows that the death of her son extends far into the future, with the destruction of all the time they would have had together as a family. She argues, in this way, that she isn’t mourning a

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pregnancy but a baby who had already taken up life in her mind and heart. This isn’t a

“pregnancy loss”—it’s a loss of a child in mind who would have taken up residence in her life for many years to come.

This passage from Amy’s story on FOL exemplifies one of the two rhetorical moves that

I have identified that babyloss writers make online to combat the “realness problem,” both of which argue that babyloss is a loss of the future. These moves are the use of the continuous conditional mode and grammatical projection into the future to show that babyloss is a perpetual and into-the-future kind of loss. The rhetorical performance of what babyloss grief looks like and feels like makes an implicit argument that babyloss is not something that happened and then is done. Here, I want to show you how babyloss writers make a particular shift from past tense to present tense. At its most rudimentary definition, past tense is when a narrator talks about something that has already happened. For instance, “I took a pregnancy test and it was positive.”

In that sentence, “took” and “was” are both verbs in the past tense. Unsurprisingly, babyloss stories are largely written using this tense.

However, more than 20% of the narratives in my study of digital babyloss stories include a marked shift from the past tense to what is called a conditional mode. The conditional mode is a label used for the verb construction “would have / should have / could have.” These phrases are used to speculate or imagine what could happen or what might have happened. In many of these babyloss stories, the writer changes from telling what actually happened to using the continuous conditional mode, which describes what would have been happening in the present if something different had happened in the past. In other words, using this mode in the story permits the writer to imaginatively alter the past and describe a present to show how things would be if they had turned out differently. As Ochs and Capps explain, “the practice of narrating life events affords

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the intertwining of memory and anticipation, yielding a blend of past, present, and future human involvement with the world” (p. 197). Indeed, when someone tells about something that happened to them in the past, it is safe to say that “the present and future are not separate from narratives of past personal experience; rather, they are primary forces shaping how the past is constructed” (p. 196). This is particularly heightened in babyloss stories, through which bereaved parents illustrate the continuation of their child’s existence, if only in their minds.

To help you see how this works, I’ll share a few typical examples from online babyloss stories. Tamara, another FOL writer, puts it this way:

Today, May 26th 2016, Amari’s due date, is the day that I decided to write my story. I

can’t believe that the months have passed and especially during the month of May which

holds both mother’s day and Amari’s due date, it’s hard not to think about what I’d be

doing this very moment. Would he have been here already?

Tamara’s change from present tense to conditional mode—“what I’d be doing this very moment,” “would he have been here already?”—illustrates for non-babyloss readers that what makes babyloss so devastating is that it demolishes the future: what would have happened. The still image on an ultrasound and the silence after delivery erases the memories and experiences that parents expected to have with their children.

Where we find the conditional mode, we find a moment where narration bifurcates into a parallel life story that, for the bereaved, always runs alongside reality. Using the conditional mode helps parents imagine what life would be like if their babies had lived, and in doing so to argue for their loss to be validated. While the movement from past tense to present or past conditional mode may seem fleeting and subtle, attention to grammatical shifts like this are

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central to understanding how these narratives are constructed in the first place; it is also vital for understanding why bereaved parents compose and share babyloss stories publically. Babyloss stories are textual homes where parents can both grieve for what did happen and where they can connect with an alternative life in which their baby did not die but instead lived, was born screaming, and continued on the previously expected trajectory of life. The conditional mode mirrors how many bereaved families will live the rest of their lives, and in portraying that aspect of their loss to a broader reading audience, they respond to the “realness problem” (Layne, p. 17) by extending what can be understood as real.

FOL babyloss storytellers stretch the definition of what is “real” to include a future that could have been. “Losing a baby is losing part of the future. There will always be someone missing in my home,” writes Jo-Anne. “There will always be something I would want to do with her. I have learned to accept her absence, but as long as there is love, our loved ones never truly leave us, they exist in all things beautiful.” These words illustrate parental grief, “interminable by its very nature, evolving and changing over a lifetime” (Cacciatore 2017, p. 209); stories like

Jo-Anne’s and Amy’s are one important way of keeping the baby’s memory alive after death, which is then shared online with other stories. Here are a few more examples of babyloss writers grappling with ‘what would have been”:

“She is in my thoughts every day and I cannot help but wonder who she would have

been. Some days I feel normal but others I feel like I don’t know who I am anymore.”

(Courtney)

“On 19 August, my daughter would have been two years old, but instead of planning a

princess themed party and getting frustrated over the terrible two’s, I sit here writing

about a baby who now lives only in my heart.” (Jo-Anne)

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“We felt very good about [the burial service]. It brought us a lot of closure, and gave us

an opportunity to honor the person she would have been – the person she was already, to

those closest to her.” (Samantha)

"I often wonder if they hadn’t stopped the labour if Joel would have been here today. I

guess I’ll never know." (Wendy)

These moments when the narrators of babyloss stories abandon simple tenses like past or present and instead imagine how things would be in an imagined present or future demonstrate the power of storytelling. A parent who can’t talk about their dead baby can, in writing and sharing thoughts and memories, continue to explore what their loss means. And in reading these stories, we can join in and affirm the lifelong, perpetual, into-the-future impact of perinatal loss.

As a researcher working with these stories, toggling back and forth between them as individually written narratives and as a communal genre for telling about babies who have died, I follow A. Frank’s recommendation in Letting Stories Breathe: A socio-Narratology (2010).

Frank suggests that analysis emerges from recollection after a researcher has spent a lot of time listening to the stories they have heard. Then, “the significance of those stories crystallizes, and how to tell the story or the stories becomes sufficiently apparent to begin writing and revising.

Most consistently in all these exemplars, what counts is which stories occur in what settings, and how different types of stories work in the settings where they do work” (p. 113). The significance of these stories as testimonials of babyloss grief is inculcated in part through the communal loss narrative of which they are a part on FOL. Each story describes the particular details leading up to and following the writer’s babyloss experience, but taken collectively and read within the website context, they together argue for each babyloss parents’ right to remember and love their “child in mind.”

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Along with using continuous conditional mode to argue for the realness of their babies and of their grief, babyloss writers on FOL project the impact of their losses into the future. They do this through imagining their way into the future, to all of the times when they anticipate that they will still be missing their babies. It’s a predictive extrapolation, and one way it appears is through the use of the phrase “will always,” which appears in 22% of the babyloss narratives in the FOL corpus. As Amy put it, “Ollie's physical presence will always be missing, but he will always remain our very much loved, oldest child. We'll miss him on holidays, during family events, in family pictures...” In this passage, Amy reveals a scrapbook page of snapshots that

Ollie won’t be there for, a very “present absence” (Tonkin 2012); this stillborn baby, for Amy, is a phantom child and her relationship to him extends into the future. Angela writes about the desire for her baby and how it cannot ever be filled by someone or something else: “I understood that the place in my heart, designated for her, will always be there, empty.” These passages illustrate the psychological reality of babyloss described so succinctly by Bueno: that “a child held in mind” can remain a potent existence far into the future after a pregnancy loss.

The babyloss narratives on FOL, both individually and collectively, argue against the discourse of “linear time” in favor of what Fahlgren terms “the time of the mindful body,” which

“allows present, past, and future to interact simultaneously and for complex interactions between external events and subjective experiences to emerge” (quoted in Livholts & Tamboukou 2015, p. 111). Babyloss stories flow between conforming to linear time and embodied time, including felt senses and perceptions of time that “confronts the universalized linear time” preferred by laws and institutional powers (Livholts & Tamboukou, p. 111). The babyloss narrators whose stories appear on FOL creatively toggle between straightforwardly temporal organization and eruptions of subjective discourse of the body, and that so many of them do so cultivates a

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collective rhetorical argument for an embodied episteme, a different kind of knowledge

(Dubriwny 2005), about babyloss as a lived experience.

Naming Faces of Babyloss

Similar to other feminist projects like the Redstocking second wave feminists participating in an abortion speak-out and the public grief ritual of babyloss families at the

NILMDTS remembrance walk, FOL blends in-group storytelling and public testimony. In simultaneously centering individual women’s stories about lived embodied experiences within a communal consciousness-raising project, the website negotiates across identifiability and each story’s embeddedness within the collective through its format. The rhetorical activities of babyloss parents are not performed in isolation, but instead are touched off second stories, and are also written and submitted in response to a call to “join the movement” of raising public awareness about miscarriage and stillbirth as issued by the site’s founder.

The real challenge faced by babyloss contributors to FOL, and to me as a researcher working with these stories, is that on the one hand these writers want to be seen, individually.

They want their babies to be seen and remembered: the details of their pregnancies, deliveries, and the aftermath of loss to be captured and understood by their readers. When earlier babyloss parents told their stories to researchers like DeFrain, Berman, Davis, and other authors (Chapter

3), they might have just been glad to have someone listen to them and acknowledge their loss was real. Yet, as more and more of these stories have emerged and cultural taboos around babyloss have diminished somewhat, the tension is that babyloss storytellers would like their baby to be remembered more publically, with their name included. Writers on FOL want to have

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their story affirmed, not just within a one-on-one conversation with a psychologist, researcher, or author, nor to have it reduced to a statistic or a platitude. What has proven to be a tension in this project is that I am not that interested in the nuances and details of individual stories, even as I have read many hundreds of them and gotten intimately acquainted with the genre of babyloss narratives. Ultimately though, I am less interested in one person’s individual story; I am more interested in patterns and the cultural trends that we can see by reading across the stories and examining the spaces in which they are told, how they come out in different settings over time.

With that question comes the ethical consideration that just because something is consciousness- raising, self- and group-empowering and validating, does that mean that it is wholly ethical, complete, and inclusive? Are there ways in which narrating a personal experience within a larger group narrative project elides or neglects certain perspectives? In the beneficial joining of many different narrators all contributing their stories in a communal space to improve cultural understanding about an often neglected or misunderstood lived experience, are there assumptions or undercurrents, things that are still left out? That is the topic of the next chapter.

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633–640.

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New York, NY: Guilford Press.

Pollner, M. and Stein, J. (1996). Narrative mapping of social worlds: The voice of

experience in Alcoholics Anonymous. Symbolic Interaction 19(3): pp. 203-223.

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Chapter 6

TELLING A STORY OF STILLBIRTH: ACCEPTING THE LIMITS OF NARRATIVE

Before she was born but after she was dead, I decided that there must be a book. There had to be a collection of stories written by people who had firsthand experience with stillbirth in their own lives, who had stared into the abyss of burying a baby and lived to tell the tale.

I sought this book, frustrated, in the library. I looked for it online. I kept thinking perhaps it would appear on a different shelf or at the top of the next search returns. But it didn’t.

And so I determined to make one myself.

At the time, as a successful freelance writer, I naively believed that making this book would be relatively straightforward. Yet other things—like having a baby—had seemed simple before. And they weren’t.

As writers, it appeals to me, we have odd relationships with words; we commit narratives to structure, memories to the page or pixel, and words to print. Words, these tiny units of meaning, are at the same time powerful and transformative as well as transient, slippery, and erasable.

When a person writes a true story, especially a narrative about a personal trauma, she confronts the profound shortcomings of language.

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***

My second baby, Beatrice, was very much wanted, and my pregnancy had been textbook perfect for the first 35 weeks. There were no signs that anything was wrong. The doctor issued no warnings and there were no alarm bells to trigger extra precaution. Just the week before

Beatrice died, the nurse practitioner assured me as we listened to the baby’s heartbeat through the doppler that I’d hold her in my arms very soon.

How could I find the words to describe the throat-clenching, cold-sweat panic I felt when just one week later the doppler resounded with silence?

After she was born and buried, I tried to make sense of what had happened. I tried writing simple declarative statements. The doctor said he was sorry. I drove to the hospital. I called my husband. The ultrasound technician showed me the image. My daughter had died. I had to deliver her body.

The words were clinical, like a forensic post-mortem. The story lost its significance, the facts subsuming the tragedy and emotion of her death. In other words, I could transcribe the timeline, but it didn’t express what I most wanted to tell.

However, when I tried to capture the emotions, I careened into the maudlin, sensational, and overtly personal. That didn’t suit, either.

In some ways, using the language of the body did a better job than relying on disembodied terms. I experimented with embodied writing, literally writing the physical forms and feelings of my body before Beatrice’s death, through labor, and in the weeks that followed:

breastmilk blood amniotic fluid cord contractions labor stretchmarks lochia tears

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Those words describe the bodily exchange I shared with my daughter and she with me.

When I tried to find words to describe her absence, psychology and spiritual terms materialized. My journal filled with language as I attempted to name the lacuna created when

Beatrice’s umbilical cord knotted off and killed her slowly. I wrote about the pit, the hole, the shadow, the silence, the emptiness.

But all of these various linguistic and compositional tactics ultimately fell short, even when I tried to weave them together in one coherent piece of writing.

All the signifiers in the world—well written, well edited, well published—could only point to the signified: my dead baby.

***

If Beatrice’s story had stayed bound within the pages of my diary, I could perhaps forgive myself as a writer and better accept the limitations of the account. Yet that wasn’t where I wanted Beatrice’s story to live; I wanted to share it by putting it in context and conversation with stories by other people who had also experienced stillbirth.

After working through many drafts, I finally decided to write about how my grief process impacted my relationships both with friends and acquaintances who had suffered miscarriages and stillbirths as well as those who had not. When I finally got my essay into a form that I felt communicated my isolation in an accessible and true way, I began submitting the book proposal for They Were Still Born: Personal Stories about Stillbirth to publishers. Along with my sample chapter, I included a chapter by a bereaved grandmother and poet, Nina Bennett, and another by a writer named Angie Yingst.

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Over the next nine months, sixteen publishers rejected the book. But in November 2009, I got word from Rowman & Littlefield Publishers that they wanted to put They Were Still Born under contract.

As I worked on the manuscript throughout in 2010, I realized that I served as the mother and the midwife for these stories—mine and 20 others—and that the resulting book would be at once both living and dead.

***

The words and stories in They Were Still Born came to life. When they were finally published, they could circulate through the world, touch and be touched, get retold, and be repurposed by others. However, in another sense, our stories died because they became closed off from our own hands; unlike in the case of a blog or a website, writers can’t update or correct a printed book in the future (unless the publisher issues a subsequent edition).

Buried in paper pulp and cardboard, the published book is cut off from the writer and sold as a

memento of a moment in which we no longer live.

Once They Were Still Born came out, reviewers responded. Readers bought it and posted comments online. Libraries acquired copies. And people who I have never met read about the most intimate and heart-wrenching experience of my life.

***

I don’t think of her every time I hear a baby cry. I don’t feel a pang of grief when I see a butterfly. I can pass a cemetery without immediately conjuring her face.

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But there are also ways in which my daughter Beatrice has irrevocably changed me, even though I do not actively grieve her death anymore.

For instance, I can barely stand baby showers. Why do expectant mothers and their families and friends count their eggs before they hatch and behave as though the universe guarantees every pregnant woman a baby at the end?

The numbers are stark. Every year, more than 26,000 American families and 1.2 million families worldwide suffer stillbirth. Countless more pregnancies end in miscarriage.

“Don’t set up the crib,” I want to say. “Put the car seat in the car, but don’t set up the crib until you’re really, really sure you’re bringing a baby home with you.”

Even now, when I look at my two living children, I see her ghost, growing with them.

She would stand a head above Austin (born just ten months after Beatrice) and a head below

Ren, who was not yet 2 when Beatrice died). Three brown-haired brown-eyed people, a matching complete set of matryoshkas.

More than eight years after Beatrice was stillborn, I no longer walk around with a gaping wound, my uterus aching. But not a single one of the 3006 days I have lived since she died has ended without her passing through my mind. The sun has not set on a single day without me wishing she somehow could have lived.

***

Over the months I worked on writing and editing the book, I was pregnant with my fourth baby, this time a boy. As he grew from another dream into a reality inside me, I perched the laptop on my burgeoning lap and molded words and ideas with my fingers.

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Sometimes people who knew about my book project asked me how I handled engaging so deeply with stories of loss while pregnant, and I understand why they asked. Wasn’t it a struggle, a morbid thing to work on when expecting another baby myself?

What these people didn’t understand, however, is that writing my story and editing the other contributors’ essays for They Were Still Born couldn’t remind of Beatrice because she wasn’t something that I ever forgot. I didn’t need the book project to recall that my healthy, beautiful daughter had died inside of me, or that it could happen again.

In reality, working on the book helped me to channel love for Beatrice—and even my anxiety about another stillbirth—into something useful, productive, and tangible.

On October 30, 2010, my fourth baby, Calvin, was born in the same hospital where I delivered Beatrice. They Were Still Born was delivered to my doorstep two weeks later.

It was a year of wonders.

***

As editor of the collection, I wanted to help the writers best say what they wanted to express, not make the stories conform to some preconceived idea of what the collection should look like. Rather than creating a shape into which the essays had to fit, They Were Still Born instead creates a constellation of stories of love and grief. Each story is a pinprick, a finite story of loss.

Taken together, the essays offer different narrative threads and manifestations of love from various stages of grief, which show newly grieving readers that grief and memory alters over time.

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The distance the They Were Still Born stories travel to us varies. For instance, one contributor delivered her son in 1966. In contrast, the most recent loss represented in the book was written by a mother whose daughter had died just one year earlier.

Narratives help people—both writers and readers—make sense of the world and our place within it. Toni Morrison, reflecting on the power and importance of narratives, writes,

“First of all, I must trust my own recollections. I must also depend on the recollections of others.

Thus memory weighs heavily in what I write, in how I begin and in what I find to be significant.”

Although Morrison writes here of novels, she views autobiographical writing and personal experiences as the wellspring for creativity. In They Were Still Born, some readers may find a story that resonates more deeply with them than others; I chose to create a collection as opposed to penning a single-author memoir for this very reason.

Like other marginalized communities, people who share their stories of miscarriage, stillbirth, and infant death frequently find themselves stigmatized or judged for content that makes others uncomfortable. Even worse, our stories may get ignored or dismissed as overly- sentimental or too personal.

Twenty-first century Americans don’t do a good job talking about many things, and I believe that death, especially the death of a child, is one of the hardest subjects we confront.

Even though—or perhaps because—they are hard to read, the stories in They Were Still

Born are significant. They give readers insight into the meaning-making importance of telling stories, and pull back the curtain on an often overlooked or misunderstood human experience.

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I’ve grappled with the realization that, as happy as I felt about my own essay when I submitted it back in 2010, four years later it feels woefully incomplete.

On the occasions (mostly at public readings and presentations) when I’ve reread my story, “Standing in the Shadows of Grief,” I feel deeply the pull of the emotions out of which the essay grew. I gain access to the feelings of the pain, darkness, and loneliness I experienced when

Beatrice died.

The overwhelming sensation, however, is that I’m reading someone else’s story. The essay is by someone I used to know, and know intimately. I can channel her, like a wispy younger sister I pity for her youth and inexperience. I feel compassion for her, yes, because she is wounded and suffering. From her limited positionality, poised where she is on her grief journey, she is doing the best she can.

But I also feel a little bit impatient with this other Janel. At odd moments, I have to suppress the desire to reject her, to commit an act of erasure. Intellectually I know that this narrator isn’t actually someone else—she is me, and the story she tells is a story we share—yet she does not know all that I know. When she stands on her paper platform, telling our shared trauma, she does it in my name, too, even though it is no longer the story I would tell.

“In the years since Beatrice’s death and birth, I have come to see her death as one tiny

piece of the human story. It is a huge part of my story… but the details about my

pregnancy with her, the particulars about how and why she died, and the specific ways in

which I grieved have gradually faded. They’ve grown vague and fuzzy around the edges

(I never would have believed that could happen, but it has).”

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I am twice again as removed from my loss as I was when I wrote this passage (eight years out instead of four). And this realization about the “vague and fuzzy around the edges” aspect of my memories about the “particulars” is even more true now than when I wrote it in 2010.

If I were to write a new narrative about Beatrice today, I would write a different story. So

I have had to make peace with the older version of my narrative. I’m learning to see it as a pinprick of light, a pure representation of who I was and what sense I made of the senseless death of my daughter at the time that I wrote it.

Even though I feel a disconnect between the story as I wrote it then and the way I feel now, I still long for my daughter, still write about her and about how I remember her.

Other contributors to the book have told me that they feel similarly—that they have learned an acceptance, even a love for ourselves and our stories, as we change. Grief changes us because love changes us.

And grief is love.

A prevalent theme in babyloss literature is that bereaved parents fear that others will forget their babies. In telling and retelling stories about our dead children, we make meaning. We keep them alive, in a sense. That’s essentially what all stories do, regardless of their subject.

By talking about our babies and describing how it feels to live without them, we imbue their short existences with significance.

As time passed following They Were Still Born’s publication, I found myself talking about Beatrice less and less. She was no less a part of my life than before, and I still thought of her with the same frequency. But I didn’t feel the same need to talk about her absence. I did not

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need anyone else to validate her life or her death. She had become like the air around me or like a lyric that never quite leaves.

I learned how to sit with Grief, almost as if she was an old friend with whom I’d fought but then reconciled. There’s a comfort there, a familiarity, a closeness. I have survived something horrible and lived to embrace life anew.

In the ongoing process of writing about writing about my daughter’s death, it appeals to me that my daughter’s afterlife is somewhat analogous to the afterlife of my essay in They Were

Still Born.

Like with Beatrice, I brought into the world my best effort: a combination of experience, a product of love, and the very best I could do.

I know that my story is beautiful. It is true. It is no longer under my control.

And it is heartbreakingly incomplete.

Even if I could go back and rewrite my story for the book, it would only temporarily bring the narrative back into alignment with my current perspective; ultimately it would seek, again, release to the world.

The story that I’m so sure I want to write today would, for a few days or weeks, feel like it expressed the essence. What I’m realizing, however, is that even if it seemed perfect when I completed it (and it hardly ever does, as any writer can attest), as time passes and I grow further from the moment in which I wrote it, the same frustrated wistfulness would creep over me. I would grapple with the inadequacy of it and start to tinker. I’d replace a word, slash a sentence, rewrite an entire passage in an effort to get closer to what I meant.

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As a writer, I’m learning to accept that one story can never capture both the beauty of my baby and the lifelong grief I carry over her death. (Of course, no one story can ever truly capture all of anything.) The essay I wrote about the aftermath of Beatrice’s death shows an important part of my story, but it can’t possibly express the evolving reality of life after stillbirth.

And so the cycle continues: remember, reflect, write, revise, release, regret, revisit, rewrite.

Unlike the stories I tell about her, I can’t change what happened to Beatrice.

She is my daughter. She died. She will always be my daughter, and yet there is nothing about her short existence that I can change now. Bound by time, I can no more return to the time leading up to her birth than I can make her again a living, breathing girl. I cannot return, hold her one more time, sing her another song, bathe her, dress her. I cannot feel her movements again. I cannot live the months of my pregnancy again, this time knowing it is all the time I will ever have with her.

My daughter is unattainable, except through memory and narrative, and even those means are limited and frustrating: slippery, uncontainable, unreachable.

So maybe that’s why it seems so important to get the story right. Perhaps the impossibility of bringing her back is why I’m drawn, again and again, to try put into words the meaning of her life on my own life.

I can’t have her.

What I can do is keep writing, trying with every attempt to better understand and better express why she matters.

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Chapter 7

“PERFECTLY HEALTHY, JUST DEAD”: DISABILITY AND ABLEISM IN

BABYLOSS STORIES

When I was finished, the doctor came in to check my print-out. “Perfect,” she said.

“This is exactly what we want to see. She sounds like a little athlete in there – strong

heartbeat, strong movement. Textbook. You’re doing great.” I beamed with pride.

Not even out of the womb, and already my little girl was an overachiever.

– Samantha, Faces of Loss

Month by month of a wanted pregnancy, anticipation builds as the pregnant woman and those around her monitor fetal development and progress toward the baby’s expected arrival.

Visible signs and symptoms, medical measurements and tests, and the popular narrative of pregnancy as incremental progress all function to socially and medically produce what is expected in a “normal” pregnancy. In the epigraph, Faces of Loss writer Samantha describes an interaction with her doctor in the final weeks of her pregnancy, providing a snapshot of expectation, medical assessment, and messages about maternal production; the doctor calls the baby’s results through technological monitoring “perfect” and tells Samantha, “You’re doing great.” Samantha, in turn, feels “pride.” Samantha has successfully reached the late stages of pregnancy in a “textbook” way, an

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adjective meaning that it conforms to an established standard or type. To do something in a textbook manner means to do things in the ideal, normative, standard, expected way. Samantha feels pride when the doctor says she’s “doing great,” but even more importantly, Samantha is proud to have produced a baby is who an “overachiever.” At this point in the narrative, Samantha and her baby epitomize a productive, able-bodied maternal-fetal dyad.

Yet the textbook-ness of Samantha’s pregnancy (and of her baby and of the narrative she thought she would tell) is erased in the tragic ending:

Following nine months of a perfectly healthy and blissful pregnancy, our daughter was

born dead. Alana died at 39 weeks 5 days, just two days short of her due date. Up until

the moment the nurse couldn’t find a heartbeat, she’d been healthy and strong. The

doctors had called her fetal monitor read-outs ‘textbook.’ She’d been active and lively,

rolling around in my belly, suffering adorable bouts of in-utero hiccups (often more than

once a day) for weeks. She’d passed every prenatal test with flying colors. There was

never a cause for concern – never a single warning sign. Until, all of a sudden, she was

gone. (Samantha)

Like many babyloss stories, Samantha’s narrative illustrates what J. Scuro, a philosopher who writes about disability, pregnancy loss, and philosophy, calls the “childbearing teleology”: the widely held assumption, enacted through “the scripts and rituals that underwrite sociopolitical, gendered, and embodied expectations about pregnancy while overwriting and erasing the existentialia implied by the pregnant body” (Scuro, 2017, p. 189) that pregnancy will always result in a baby. The way that Samantha narrates her babyloss story illustrates a teleological perspective on pregnancy by using words like “perfect,” “strong,” “textbook,” “active,” lively,” and, tellingly, “healthy.” Samantha asserts that her body was following standard, normative,

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healthy ideal patterns and expectations and that her baby was as well, reinforcing reinforces messages that she received directly and indirectly about how pregnancy works and what happens in what order, which are all part of ableist assumptions that comprise childbearing teleology.

This unquestioned assumption about pregnancy has implications for babyloss individuals, writes

Scuro, because it

is exercised through a medical and cultural complex of guidance and instruction,

asserting itself as what ‘everyone always’ expects when the pregnant body ‘appears.’

There is very little meaning or ritual granted to the experience of miscarriage, except in

the negation—as a ‘failed pregnancy’” (2017, p. 189).

A teleological view of pregnancy is, at its core, a neoliberal model of how bodies should function, exalting productivity and denigrating differences.

Popular views of pregnancy as a predictable and normative process that (always) results in a healthy baby are confronted by the fact of miscarriage and stillbirth. Because these views are held so widely and unquestioningly, people are caught off guard when they lose a baby before birth. These topics are not talked about openly and directly, making miscarriage and stillbirth even harder to cope with and raising many questions about causality and blame. When babyloss parents talk about their experiences, they try to find answers for themselves, and they also must consider how their listeners or readers will understand and interpret their losses. Essentially, popular misconceptions about the nature of pregnancy loss (its frequency, physical and emotional impact, and attendant grief) impinge on babyloss writers, who may find themselves without adequate answers to these questions. Samantha’s claim about the “textbook” nature of her pregnancy and the “perfect” healthiness of her unborn baby underlines a vital aspect of the

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storytelling conventions of the babyloss narrative genre: a pervasive parental insistence on the perfection of the dead babies around whom these stories are centered.

As I have shown in previous chapters, babyloss storytellers find ways to tell about their babies and their grief in the socio-rhetorical presence of others. Babyloss stories are hard to tell and those that emerged into texts in the 1980s and 1990s were often anonymized and embedded within authored books. Over time, shifts in practices and technologies have changed how babyloss stories are told. Listeners/audiences continue to play a vital role in how that storytelling takes place, whether the storytelling interaction occurs in person or archival/collectively in digital spaces like FOL. So far my analysis has largely focused so far on the enabling and collaborative means through which these stories emerge into the text and the world. In spite of increased awareness about babyloss, there are still parts of babyloss experiences that are hard to tell. I have identified a gap in babyloss stories as a collective as well as within my own oft- repeated babyloss narrative: disability. In this chapter I ask why disability, a topic so deeply intertwined with pregnancy, pregnancy loss, and the future, is seemingly so absent in these stories. By bringing an ableist studies framework to babyloss storytelling, we can notice the ways that disability shows up as a strong presence in how people narrate babyloss.

Where is disability in babyloss stories?

There is a pattern of not mentioning disability in babyloss stories as they appear on FOL.

For example, in the story from which I draw this chapter’s epigraph, Samantha does not disclose

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the cause of her baby’s stillbirth, nor do readers learn whether anything was physically “wrong” with Samantha’s baby. Indeed, all of the adjectives used to describe Samantha’s body and her baby’s body are positive: perfect, healthy, beautiful. There is no mention of what might have caused her baby’s death; to the contrary, she repeatedly describes her baby’s perfection.

Samantha’s descriptions resonate with most of the babyloss narratives I’ve read. For instance, one of the contributors to my edited collection, They Were Still Born, similarly describes her baby in a memorable phrase that I take as this chapter’s title:

I am a modern woman with tattoos and good health insurance whose daughter was

stillborn for no medical reason whatsoever. We opted to find out anything and everything

about her death. We performed autopsies, blood tests, chromosomal studies, and genetic

counseling. They told us nothing more than what we knew already: she died. She was

perfectly healthy, just dead. (Yingst, p. 46, emphasis added)

Yingst’s description of her daughter as “perfectly healthy, just dead” is a sentiment repeated across the corpus of babyloss stories on FOL, Yingst’s love for her baby is poignant and deep and her search to understand what caused her baby’s death resonates with many of the babyloss narrators’ whose published stories describe tests and autopsies. Like Samantha’s baby, who excelled at prenatal testing, Yingst’s baby passed all of the postmortem tests. Both mothers assert their babies’ health. Yet clearly something happened to cause these losses.

In a corpus of stories about pregnancies that “fail” and babies that die before birth, it would seem likely that many of the narratives would explicitly or implicitly discuss congenital anomalies and/or failings of maternal bodies. Yet in my research I have found that storytellers do not discuss disability or possible disability of their babies, meaning that the subject of disability is present almost entirely through its absence. When writers mention testing, it is often to report

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negative results which, as in Yingst’s essay, shows the irony and inexplicability of the baby’s death. The silence of babyloss writers about the possible or confirmed disability status of their babies is itself significant and should be examined because it does not seem to make sense. I do not want to criticize babyloss writers, nor suggest that they should have told different stories; writers are constrained in what they can tell by the abilities and willingness of their listeners to be with complexity, unfinishedness, ambiguity. Because these stories ultimately are told within an ableist culture, they offer a narrative space in which we can see and examine the ways that ableism impacts how people tell stories about their lives. Highlighting disability/ableism reveals the aspects of a life that remain untellable, unmentionable, elided or unremarked, due to pervasive unconscious biases such as ableism.

In this chapter I will argue that babyloss storytellers have to forecast for and negotiate with ableist ideologies their readers/listeners might hold that impact self-identification and judgements about their miscarried or stillborn babies. Babyloss writers often write that they worry their listeners/readers may be dismissive of their grief (Layne 2003; Cacciatore 2010;

Jenkins 2009). On top of having to surmount the “realness problem” (Layne),15 babyloss writers may also worry that interlocutors may see the baby as less than, inferior, and not as valuable if there is an acknowledgement of possible, likely, or conclusive evidence of something having been “wrong” with the baby. Babyloss parents might also experience an internal disparity between the “child in mind” (Bueno 2019) who was wanted and the idea that something may

15 An American national survey about public perceptions of miscarriage published in Obstetrics and Gynecology 2015 found that 55% of respondents believed that miscarriage occurred in 5% or less of all pregnancies. The actual rate is 15–20% of clinically- recognized pregnancies. The study also found that those surveyed attributed causes of miscarriage to a stressful event (76%), lifting a heavy object (64%), and previous use of an intrauterine device (28%) or oral contraceptives (22%) (Bardo et al.). 149

have been flawed about that unborn baby. There is also an external disparity between an ideal baby as envisioned collectively by an ableist society, which eschews disability for able- bodiedness and a real flesh and blood baby, especially a dead one.

Concerns about references to disability are not only about the baby who died, either. As I will show, attempting to speak a story about a maternal body that failed to produce the healthy desired outcome in an ableist society is risky. The narrator of a babyloss story must confront the common assumption that a virtuous, loving, healthy woman is guaranteed a healthy pregnancy and that her healthy pregnancy will, by its very definition, be productive. This model of pregnancy is invested in production of the desired thing. These two ableist assumptions are interwoven: the child in mind is assumed to be a healthy, viable, full term infant, and the pregnancy is a perfect, scriptable process. But when something goes amiss, the question then becomes was there something wrong with the baby, something wrong with the process, something wrong with the mother? These narratives, in trying to figure out what went wrong and who is to blame, employ rhetorics that predict and respond to anticipated ableism.

This chapter examines how even when babyloss stories are told, there are still parts that are difficult to include and are therefore erased or elided. A range of details may go unacknowledged, and there is a psychological and potential social cost to disclosing things that relate to disability along with death; listeners’ likely unquestioned views about disability and non-normative bodies influences what babyloss storytellers can disclose. For pregnant women, for people who are about to become parents or want to become parents, for people seeking help with conception, for people who are surprised by a prenatal diagnosis, pervasive ableist ideology has real world implications for having stories we can’t tell or that we don’t know how to tell.

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Pregnancy and Ableist Discourse

I had been writing about babyloss for many years before I encountered critical disability studies as a valuable framework for noticing what is included and excluded from these stories.

Just as critical race theory, gender theory, feminist criticism, subaltern studies, etc. have taken up the question of how everything is socially constructed through oft-unstated hierarchical binaries, disability theory insists on uncovering and critiquing binaries as well. Critical disability studies scholars intervene to transform “assumptions about identity, ideology, politics, meaning, social justice, and the body” by paying attention to disability, writes T. Siebers in Disability Theory

(2008, p. 1). As Siebers explains, “identities, narratives, and experiences based on disability have the status of theory because they represent locations and forms of embodiment from which the dominant ideologies of society become visible and open to criticism” (2008, p. 14). In the case of the stories I study, embodiment works across two subjects: the maternal and the fetal. When examining how people tell stories about the death of those subjects (the would-be-mother and the baby-in-becoming), we can start to identify and interrogate ableist assumptions about bodies and disability, in the specific context of pregnancy.

Pregnancy as a subject is deeply entrenched in ableist discourse. Consider, for instance, the common things people say about their own or others’ pregnancies: ‘I don’t really care if it’s a girl or a boy, just as long as it’s healthy,’ ‘Ten fingers, ten toes, eyes, ears, nose in the right places,’ and after delivery, ‘mother and baby are both healthy and recovering.’ Siebers calls the moment of birth an “ideological moment fraught with anxiety” (p. 187) about bodies and norms:

When a baby is born, its mother asks, ‘Is it a boy or a girl?’ Her second question is, ‘Does

it have all of its fingers and toes?’ The questions seem to address different curiosities. In

fact, the questions voice the same inquiry in different rhetorical guises, as exposed by

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another age-old turn of phrase. Ask a pregnant woman whether she wants a boy or a girl,

and she will reply, like clockwork, ‘I don’t care if it’s a boy or a girl as long as it’s

healthy.’ (Siebers, 2008, p. 187)

In Death of a Dream: Miscarriage, Stillbirth, and Newborn Loss, co-authors D. and R. Ewy state it even more bluntly: “Every couple’s hope is for a normal, healthy baby” (1984, p. 41). The presumption of the undesirability of disability is pervasive and unquestioned and is made noticeable in what can and cannot be said about pregnancy. It may no longer be socially acceptable for expectant parents to admit to preferring one sex over another or brown eyes over blue, but it remains perfectly acceptable to hope for a “healthy” or “normal” baby. This is because disability is widely viewed as a “terrible unending tragedy” (Kafer 2013).

Ableist ideology relies on the idea of a binary opposition between normal/abnormal, healthy/unhealthy, and abled/disabled, which in turn relies on four problematic assumptions about disability. Ableism adopts a biomedical lens that defines disability as

1) contained within an individual’s body;

2) knowable through medical testing and monitoring;

3) a static identity marker; and

4) undesirable.

However, a critical disability approach refutes the biomedical model of disability that works in service to all four of these problematic assumptions about what disability is (Garland-Thomson;

Davis 1995; Shakespeare; Siebers 1995; Linton 1999). The social model of disability instead posits that differences across bodies and minds is not problematic; instead the physical built

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environment, social structures, oppressive and exclusive policies, and discrimination that disable people. Along with that, disability is not a stable category, as people are much more interdependent than is often recognized and a person may experience disability at any point and in any number of ways throughout their life. To imagine that the pregnant body is where a disabled individual is either made or not, in utero, is to severely misunderstand disability and how disability works in the world.

Discrimination against people with disabilities has a long history of being entwined with reproduction. As R. Hubbard (2006) explains in “Abortion and Disability: Who should and should not inhabit the world?,” eugenics, “racial hygiene,” and selective abortion all assume that disability is not to be desired and “lump[s] people with disabilities as though all disabilities were the same and always devastating and as though all people who have one were alike” (Hubbard

2006, p. 93). Hubbard tracks back to the rise of the eugenics movement to the continued rhetoric about selective abortions. People “seem to forget that we live in a society in which every day people of all ages are disabled,” yet we still have an “excessive preoccupation with inherited diseases” that medicine tries to prevent, predict, and resolve, sometimes through abortion

(Hubbard p. 94).

This preoccupation with congenital conditions is unsupported by statistics, which show that only about 15% of all people with disabilities were born with those conditions (L. Davis). A fixation on trying to prevent disability by testing fetuses and newborns reinforces the biomedical model of disability as a problem with the body and furthermore is testable, static, and undesirable. In addition, while conditions such as Down Syndrome, deafness, blindness, absence of limbs, and heart defects are testable, many of the most frequently occurring disabilities are not diagnosable or only become apparent over time as a baby grows up, such as neurodivergence,

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anxiety, depression, motor/sensory disorders, invisible disabilities, and learning disabilities.

Kafer, in her discussions about the vital intersections of disability and reproductive freedom, points out that “physical disabilities and intellectual disabilities are often construed differently in debates about prenatal testing and selective abortion, and disability movements need to acknowledge (even as we interrogate) those distinctions” (Kafer, 2013, p. 162). This broadening of how disability is defined, as well as acknowledging the fluidity of its implications, should give pause when talking about pregnancy and pregnancy loss, as even seemingly benign comments about wanting a baby to be healthy do not account for the broad spectrum of dis/ability, nor do they embrace the diverse range of healthy forms and functions that human bodies can take.

My Perfect Beatrice

As a bereaved mother who has written extensively about my own babyloss, I only realized my own neglect of disability when I took a graduate seminar about disability and narrative in 2017. In the years since my daughter was stillborn, I wrote thousands of words, gave workshops and talks to health professionals, did book readings, and spoke at in-person support groups. All that time, I felt secure in my story and how I told it. I accepted that the ways I thought about Beatrice’s death might change, but I assumed that the facts about what happened were set; they couldn’t change. The way I introduced the facts of my baby’s stillbirth had become almost rote. I would say, “My second baby was stillborn at 36 weeks. She was perfectly healthy, but there was a knot in the umbilical cord. It likely formed early in the pregnancy and got tighter and tighter. Then she died.” More than a decade had passed with me writing and talking about Beatrice before I was forced to confront the realization that I had elided—indeed, forgotten—some of the facts around my baby’s death. I was uncomfortably stunned into this

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discovery when I enrolled in a graduate seminar about Narrative and Disability. In reading across a texts by critical disability scholars, I found that a central claim to how I open the story about my daughter’s death might not be true, after all. She may not have been “perfectly healthy.”

I thought I knew the story. I believed I told it truthfully.

Here are the facts:

Fact: Beatrice was planned and very much wanted.

Fact: My pregnancy seemed normal, until it wasn’t.

Fact: Beatrice’s death was caused by a cord accident.

On the day Beatrice was born, the obstetrician pointed out several pathologies of the umbilical cord, including its excessive length, lack of enough Wharton’s jelly, and a tight true knot. Before they had even taken our baby’s body away to hold it in the morgue, hospital staff sat down with us to discuss the benefits of an autopsy. Part of the postmortem was testing to determine whether something was wrong on a genetic level that may have caused or contributed to Beatrice’s death. My partner and I both wanted as many answers as we could get, so we signed the dotted line.

Unfortunately, after a six week wait, we learned that the biosample taken for genetic testing was too compromised to grow in the lab, so essentially we got no more information about any possible congenital conditions. The coroner determined the cause of death to be an umbilical cord accident (UCA).16 Thus, in the absence of explicit positive confirmation of genetic

16 A review of medical literature by J. H. Collins finds that umbilical cord accidents cause about 15% of stillbirths worldwide, and that there are multiple abnormalities of the umbilical cord that can present. In the case of my baby, at least 4 characteristics associated with increased risk of fetal demise were present. For more see Collins J. H. (2012). Umbilical cord accidents. BMC Pregnancy and Childbirth 12(Suppl 1), A7. doi:10.1186/1471-2393-12-S1-A7. 155

anomalies, I wanted to believe—needed to believe—that my baby was perfectly healthy. If nothing was confirmed as “wrong,” I could genuinely say that she was fine. I could blame her death on the hardware between us rather than on my baby’s essential health or on my maternal qualities. Like my book contributor, I saw my baby as “perfectly healthy, just dead” (Yingst, p.

46).

But in spending a semester reading critical disability studies texts while honing in on my dissertation topic of babyloss narratives as a genre, I had to confront the undeniable unknowability of the claim that my baby was “perfectly healthy.” The disability scholars we read made cogent arguments against the continued lack of attention to disability as an identity marker

(Siebers 1995; Garland-Thompson 1997) and therefore also as a framework through which to interrogate power (Clare 1999), epistemology (Hamraie 2013; Cvetkovich 2012), rhetoric

(Dolmage 2014), sex and sexuality (McRuer 2006), and of course, narrative theory (Bérubé

2016; Couser). This intellectual work required that I face the fact that verifiable information about Beatrice’s health before her death was something I could not know. But entertaining the question brought up even more things to consider, about interdependence, blame, and causality.

Being open to the possibility that my daughter was not completely and unquestioningly able- bodied and “perfectly healthy,” as I had claimed so many times, uncovered ableist assumptions that I had not realized that I held.

Ableist Ideology

The absence of disability in babyloss stories is most apparent through noticing signs of ableist ideology. Disablism is defined as the social, political, cultural and psycho-emotional exclusion of people with physical, sensory and/or cognitive impairments. In other words,

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disablism is a way of labeling as inferior people with disabilities, whose bodies are non- normative. Many people are familiar with the concept of oppression of or injustice to disabled people due to individual and systemic disablism. However, for the work I do with babyloss storytelling, the approach of ableist studies is most pertinent and useful. Ableist beliefs set “up a binary dynamic that is not simply comparative but rather co-relationally constitutive” between disability and ability, according to F. J. Campbell (2009, p. 6). A philosophy of ableism plays on the “seduction of sameness as the basis to equality” (Campbell, p. 4) and “has a “function in inaugurating the norm” (Campbell, 2009, p. 5). It does so not through directly denigrating disability but through lionizing and normalizing the ideal norm. In ableism,

disability and disabled bodies are effectively positioned in the nether regions of

‘unthought.’ For the ongoing stability of ableism, a diffuse network of thought depends

upon the capacity of that network to ‘shut away,’ to exteriorise, and unthink disability

and its resemblance to the essential (ableist) self. This unthought has been given much

consideration through the systematisation and classification of knowledges about

pathology, aberration and deviance. That which is thoughtabout (the Abled norm) rather

ironically in its delimitation becomes vacuous and elusive… abledness … must have a

constitutive outside. (Campbell, 2009, p. 13)

Critical disability studies scholar J. Cherney (2019) takes up ableism in a similar vein to explain that to study ableism is to shift “focus away from the ‘individual patterns’ behind specific discriminatory acts to investigate the ‘social situations or cultural representations that influence those patterns’” and enables the asking of new questions, such as “What makes this an ableist culture?” and “How is this an ableist culture?” (Cherney, location 145). Cherney argues that ableist thinking can only operate if its assumptions are accepted broadly throughout society, and

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that to see these assumptions, ableism “must be brought into use to engage specific situations and controversies.” Like I am with babyloss stories, Cherney is interested in how “rhetoric has been the vehicle driving” the “main premises of ableist thinking [that] appear in our discourse” (2019, location 145).

Ableism’s insistent focus on able-bodiedness can make it harder to discern than disablist rhetoric and that elusiveness is part of how it abjectifies disability and disabled identity.

Rhetorician and disability scholar J. Dolmage examines how higher education’s physical and rhetorical spaces “discipline and influence ideas” (2017, p. 8) to maintain ableism in academe through both disablism and ableism. “Disablism negatively constructs both the values and the material circumstances around people with disabilities. Disablism says that there could be nothing worse than being disabled, and treats disabled people unfairly as a result of these values”

(Dolmage 2017, p. 6-7). Ableism complements disablism by making “able-bodiedness and able- mindedness compulsory” through “render[ing] disability as abject, invisible, disposable, less than human, while able-bodiedness is represented as at once ideal, normal, and the mean or default” (p. 7). While Dolmage writes about ableism in the context of higher education, his critique of ableist rhetoric helps reveal the ways that rhetorical space can make disability

“abject” and “less than human” in ways that have profound implications for babyloss storytellers who may find themselves hiding or obscuring signs of disability identity of either mother or baby.

Babyloss parents also face down the contradiction of the ideology of ability, which

Siebers argues is built on the dualism that says bodies don’t matter, or if they do matter, they are distinct from and inferior to the mind; and that we must perfect the body (2008). As I will show later in this chapter, pregnant women are expected to conform to what it means to be a good

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mother even before they conceive, and then if their pregnancy “fails,” they are given conflicting messages about the cause. Women are told that it was just nature taking its course and that it isn’t their fault. But they also may hear repeated common misconceptions about potential causes of miscarriage and stillbirth and be asked about behaviors that are known to increase the risk of pregnancy loss. So while their actions may not necessarily be causal, babyloss women still might be questioned (or question themselves) about what they might have done that caused the loss.

Siebers’s point about the paradoxical claim of ableism—the body doesn’t matter and also that we must perfect the body—are heightened within the construct and lived reality of pregnancy.

Pregnancy itself is socially constructed in service to the ableist and capitalist neoliberal view of pregnancy as production. At its logical conclusion, ableist ideology defines the baseline by which humanness is determined, setting the measure of body and mind that gives or denies human status to individual persons. It affects nearly all of our “judgements, definitions, and values about human beings, but because it is discriminatory and exclusionary, it creates social locations outside of and critical to its purview, most notably in this case, the perspective of disability” (Siebers, 2008, p. 8). Like the other scholars I cite here, Siebers sees ability as taking as its “invisible center” disability. Scuro takes this assertion and argues that women’s pregnant bodies are imagined as productive, functional, normative, and abled—able to generate new life.

But the ideology of ability simultaneously fears what the female body might create. Ableism makes us afraid of becoming disabled, we also see pregnancy and the arrival of new babies through a lens of ableism, and that fear and prejudice manifest through how people talk about pregnancy and pregnancy loss specifically.

Discourse about pregnancy and newborns are heavily influenced by what disability studies scholar L. J. Davis (1995) calls the “tyranny of the norm,” a means of evaluating

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individual specimens by measuring them against an average. Davis explains that the word

“normal” didn’t even appear in the English language until the 19th century, and it relates to being measured and compared to others in the set. In contrast, the word and concept “ideal” was around much longer and “presents a mytho-poetic body that is linked to that of the gods. The ideal body is not attainable by a human” (Davis 1995, p. 25). However, with the rise of statistics and that branch of knowledge, norms and averages became the concept against which individuals were measured, and “average then becomes paradoxically a kind of ideal, a position devoutly to be wished” (Davis 1995, p. 27). In the discourse of prenatal care and obstetrics, the tyranny of the norm trickled down from medical professionals (obstetricians and nurses and midwives) to individual pregnant women and their families. As prenatal testing and routine monitoring of pregnancy progress became more and more common in the United States, individuals adopted the idea of things being “normal.”

This fixation on the “average” or the norm appears in babyloss stories through frequent references to tests, measurements, everything being “textbook,” right on track/time, uneventful, etc. Terms like this constrain babyloss writers to evaluate their pregnancies and their babies through the “tyranny of the norm.” An example from FOL writer Tina illustrates how the idea of the norm impacts pregnancy expectations: “Our 16 week testing told us to expect a healthy baby girl and our 20 week ultra sound showed she was energetic and on track. ‘Perfectly average’ became the norm, and I treasured every movement, every kick, every second being pregnant”

(Tina). Tina and other babyloss mothers sought the “norm,” which in turn meant following the anticipated path of an average pregnancy—nothing exceptional, nothing outside of the expected.

These themes, of “normal,” “average,” and the bodily production of a “normal” new human being, all relate back to eugenics and thus to disability. In the present time, reproduction

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is tied up with “the idea of the perfectable body undergoing progressive improvement” from generation to generation (Davis, 1995, p. 31). Therefore, a pregnancy loss like miscarriage or stillbirth is embedded in discursive patterns that unquestioningly ascribe an ableist justification or explanation for what has happened. This underlying ableist rhetoric, unseen and unchallenged to a large degree, is what underlies when people say “maybe it was for the best” that a baby died before birth. This response functions at two levels: both at the (highly questionable) anti- disability stance that it is better to be dead than disabled as well as about the good and benefit of society and the species at large. Ableist rhetoric constructs pregnancy as a mode of intergenerational production, which positions parents whose babies die before they are born in the category of failed producers.

Educating Mothers

Ableist views are promoted through bestselling books like What to Expect When You’re

Expecting and popular online pregnancy and parenting advice sites like Babycenter.com, where perspective parents get information and guidance for how to have ‘normal’ ‘healthy’ pregnancies. The popularity of such advice is reflected in FOL babyloss stories. For example,

FOL writer Tina had never planned to have children, but when she “saw those two lines” on a positive pregnancy test, she “immediately got all the apps, read (or skimmed) all of What to

Expect, and started researching all things baby” (Tina). FOL mom Sarah emphasizes her intentionality, too, writing, “I was very involved with my prenatal visits and constantly read up on everything I could be expecting and what I should do to ensure a healthy pregnancy” (Sarah).

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These two representative comments from FOL posts epitomize the acceptance and enforcement of what rhetorician M. Seigel calls “pieties” that are intended to regulate women’s bodies during pregnancy so as to promote healthy childbearing (The Rhetoric of Pregnancy 2013). Pregnant women are encouraged to read popular manuals, as well as download apps, take childbirth classes, and do research, all supported by the obstetrical biomedical models of pregnancy that developed over the 20th century along with embryology. Pregnant women learned that experts other than them knew what was happening with their pregnancies and when, and good mothers adhered to those timelines and standards. To do otherwise might call into question one’s preparedness for motherhood, which in turn could translate to guilt in cases of miscarriage or stillbirth.

As prenatal care shifted from midwives and home deliveries to obstetricians and hospital deliveries, so too did week by week scientific knowledge of embryological development developed through the 20th century, which has resulted in what S. DiCaglio (2017) refers to in

“Staging Embryos: Pregnancy, Temporality and the History of the Carnegie Stages of Embryo

Development” “the seamless connection drawn between embryo and baby” that limits our ability to view the wider spectrum of pregnancies” (DiCaglio, p. 4). This kind of normative proscriptive thinking causes us to “see pregnancies that end in ‘normal’ live births as the norm, and miscarriages, stillbirths, molar pregnancies, and other such results as not only atypical, but exceedingly rare. They are anomalies, misfires on the developmental path, failures and oddities”

(DiCaglio, p. 4). DiCaglio critiques this by bringing time and space back in to considering how embryos develop and thereby poses questions like how the language of miscarriage and blame and of fetal optimization could change “in response to a definition of pregnancy that encompasses the wide range of embryo outcomes?” (2017, p. 21). My attention to disability in

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this chapter is one way of answering this vibrant and challenging question posed by DiCaglio, because I take up parent stories about “miscarriages, stillbirths, molar pregnancies, and other such results” to examine how the tyranny of the norm intersects with babyloss experiences and how individuals tell those stories.

Messages about “normal” pregnancies, and thus, ableist ideology, are infused throughout the babyloss narratives that appear on FOL. My analysis finds that ableist assumptions are enacted through two rhetorical stances: the production model of pregnancy and specific word choices that portray the baby who died as perfect.

Performing Proactive Pregnancy

The production model of pregnancy, which I just explained as an outcome of unquestioned ableist ideology, shows up in babyloss stories when writers emphatically perform their ethos as responsible expectant mothers. who conformed to healthy habits and did all the right things. An example of this maternal ethos is Tina, who took childbirth classes, “spent hours reading reviews of infant thermometers, the safest car seat, and best stroller,” watched videos on how to hold an infant, how to change a diaper, how to tie a Moby wrap” (Tina). This highly intentional way of viewing pregnancy as moral preparation to be a parent aligns with what

Siebers and L. Davis both describe as the link between able-bodiedness and production. For example, babyloss writers list the things they did, such as take vitamins, eat healthy food, rest enough, and just as importantly, embrace their new maternal role with patience and excitement.

For example, Ashleigh writes, after finding out that her baby had died,

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This couldn’t be our lives. Babies don’t just die, especially not our baby--I was healthy, I

bought only organic food, I went to an aqua natal class, her room was ready, her car seat

was in my car which I could see from the office window, we had saved money for me to

stay home with her, she was going to the school down the street from our house, her dog

Marley was anxiously awaiting her arrival, WE were anxiously awaiting her arrival.

(Ashleigh)

Ashleigh’s disbelief about her pregnancy ending in stillbirth is framed by the convictio n of her preparation: she did all the right things and was prepared, physically, emotionally, financially.

Ashleigh had even started thinking of her dog as her baby’s dog, indicating that her unborn baby was not only real, but already has relationships with entities and objects other than Ashleigh. The baby possesses things: “her room,” “her car seat,” “her dog.” Not even born yet, her school has been chosen as well. Yet in spite of being a good mother and following all the social and medical rules, Ashleigh’s pregnancy ended without a baby.

Prenatal vitamins and healthy eating are recurrent themes that babyloss mothers point to as evidence for the care and caution they took with making their unborn babies healthy. After initially feeling ambivalent about a surprise pregnancy, FOL writer Lindsay came around to the idea of having a baby. When the heartbeat wasn’t visible at her first ultrasound, Lindsay redoubled her efforts to give her baby the best possible chance: “I took prenatal vitamins and held my stomach constantly saying firmly ‘live, baby’ the whole time fully believing my baby would do just that. I was 34, had a great job, own my home, have a wonderful support system, and while the baby’s father isn’t my husband, we are madly in love, so while this wasn’t planned, this pregnancy was good” (Lindsay). In contrast, Alyssa’s planned second pregnancy seemed like a guarantee to her because it “progressed in textbook fashion, just as it did during

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my first, so what did we have to worry about?” (Alyssa). For this babyloss writer, the new pregnancy lined up both with the textbook expectations from What to Expect When You’re

Expecting as well as personal previous pregnancy experiences. Indeed, many of the FOL stories point to having already experienced a healthy pregnancy and live birth as an assurance that the same outcome would result again in a second or third pregnancy. The assumption is that a maternal body that has already shown itself able to conceiving, nurturing, and delivering a healthy newborn will produce the same outcome again.

Fiona Campbell suggests that ableism first begins its work on a human at birth: “From the moment a child is born, he/she emerges into a world where he/she receives messages that to be disabled is less than, a world where disability may be tolerated but in the final instance, is inherently negative” (p. 17, emphasis original). I only would disagree with Campbell’s argument in order to push the start to during pregnancy or even to pre-conception stories about what kinds of babies are wanted and, if they die, which ones are worthy of being grieved. For it is not at the moment of birth that a child is impacted by ableism and ableist ideology, but for much longer than that. And when that baby dies before birth, the parents who are trying to tell what happened encounter pervasive anti-disability perspectives in their listeners/audiences, and possibly also within their own unexamined worldviews.

Pregnancy and the Future

Understanding that ableism quietly underpins discourse about pregnancy and by extension babyloss helps to make visible the links between a childbearing teleology, compulsory able-bodiedness, and how babyloss storytellers may worry about encountering dismissive reactions. Because of dominant ableist perspectives, listeners to stories of babyloss might dismiss

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the miscarriage or stillbirth as something that shouldn’t have ever been. Babyloss writers thus need to anticipate this response and adjust their stories to account for ableism. For example, a post by FOL writer Cristina describes her rhetorical defensiveness in the context of how real world people had already responded to her miscarriage. Her family was supportive except for

“the words of encouragement they offered. Everyone says the typical things they think you ought to hear, ‘It’s going to be ok. You’re young and healthy; you can have more babies. Maybe it wasn’t meant to be, etc…” (Cristina). The underlying message is that if something went wrong with the fetus, it is better that it did not survive. Cherney (2019), in describing ableism’s impact on how listeners interpret a narrative, writes, “signifiers of disability come with so much ideological baggage that they change the entire paradigm through which people understand” a story (location 190). For babyloss narrators, it seems better to avoid mentioning any “signifiers of disability” in order to skirt the dismissive response that might come from their inclusion.

Another FOL writer says, “When you suffer a miscarriage during your first pregnancy you hear,

‘It’s common, try again. It just wasn’t meant to be’” (Melissa 2). Essentially, these responses to miscarriage or stillbirth expose an underlying assumption that to have a baby with a disability is worse than having a baby die. As pregnancy is oriented toward a desirable outcome—the safe arrival of a healthy baby—there is an assumption that, if it ends, it is a blessing in disguise.

One of the significant connections between an ableist perspective and babyloss is that ableism sees disability not just as a negative in the present—it also inflects the desirability or undesirability of the future. This is the crux of the issue for a bereaved parent who wants to share a story of their wanted baby dying before birth. As Kafer puts it,

if disability is conceptualized as a terrible unending tragedy, then any future that includes

disability can only be a future to avoid. A better future, in other words, is one that

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excludes disability and disabled bodies; indeed, it is the very absence of disability that

signals this better future. The presence of disability, then signals something else: a future

that bears too many traces of the ills of the present to be desirable. In this framework, a

future with disability is a future no one wants, and the figure of the disabled person,

especially the disabled fetus or child, becomes the symbol of this undesired future. (p. 2)

Kafer concisely explains ableist contemporary moment into which Beatrice died and was born, and this description shows at least part of the reason why I may have subconsciously shielded signs of Beatrice’s possible genetic problems. For in telling her story I did so in a culture in which the validity of my grief and the perceived value of her life may be judged by the others who hold invisible and unchallenged assumptions about dis/ability. It would have been unbearably painful for me to recount the bodily and gestational signs that indicated that Beatrice might be anything other than a model infant, a human exhibiting impeccable genetic qualities, and a fully-abled child. Like Samantha, the FOL writer whose words open this chapter, I felt pride in believing my unborn baby, “Not even out of the womb,” was “already … an overachiever” (Samantha). But then she was born dead.

My baby failed the Apgar, the newborn wellness test performed at one minute and five minutes after birth. I remember hearing the nurse checking her and noting the results to each of the aspects of the test. Everyone in the room knew she was dead. But the standard medical procedures still must be followed, the protocols observed rigorously. It felt cruel, that five minutes after her body slid silently from my vagina, Beatrice was subjected to a test she would

‘fail,’ again. There were no attempts at resuscitation. She wasn’t just blueish, a condition common among even healthy newborns. Her tone was slack. Her grimace response—well, her

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face was in a peaceful grimace, immobile. She had been dead at least two days, probably longer, before I delivered her body.

Still I wanted to believe that, had she been born alive, Beatrice would have passed the

Apgar tests with flying colors, that she would have been categorized as “normal and healthy.”

However, in conducting research and then in revisiting my own babyloss story, I have had to confront the prevailing prejudices against disability that are intrinsic to how I conceived of my daughter’s death and what it would mean to consider that she may not have been “perfectly healthy.” I’ve had to learn how to stay in the deeply uncertain and unscripted place of imagining that my baby did not tragically and instantaneously transition from ‘perfect’ to dead. More of her brief life may have been in more ambiguous categories, unknowable embodied states. Narrating those is impossible because of not-knowing, and then narrating what I do know feels risky because of the invalidation others may express in response. Yet ableist rhetoric loudly insists, without admitting that it is rhetorical at all, on a binary that does not actually hold, and babyloss stories, themselves attempts to make sense of a liminal and frequently nonlinear lived experience, are one site in which ableist discourse falls short of representing complex and nuanced realities.

Rhetorical Functions of Terms

To this point I have reflected on my own realizations about my own ableism and illustrated some of the ways that ableist ideology influences babyloss storytelling. I now turn to the corpus as a whole in order to read across a corpus of babyloss stories for insight into how and where ableism appears and also where narrators may subvert or otherwise address ableist discourse. Ableism is expressed through the rhetorical—“rhetoric has been the vehicle driving”

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ableist thinking, as Cherney argues (location 148)—so here I pay close attention to specific terms that writers use to portray their pregnancies and their babies. In order to read across a large number of babyloss stories, I leveraged a corpus linguistics tool called Lancsbox, which developed by corpus linguistics scholars at Lancaster University, UK, to read across the FOL corpus (n=100) (Brezina, Timperley & McEnery 2018). Reading by eye alone it proved challenging to find a specific word or phrase that may allude to disability. Not only are there a wide range of references, from specific disabilities, to terminology, to the euphemisms that are often associated with disability, but as I have already discussed at length in this chapter, disability shows up more through its seeming absence, so close readings to find explicit mentions of birth defects or other aspects of disability was unsatisfying and incomplete. By using

Lancsbox software I could search with more granularity and identify collocates and patterns of usage more easily.

Instead of only searching for terms that obviously allude to “disability,” I took up the project of looking closely at words on the other side of the “co-relationally constitutive” “binary dynamic” that Campbell argues is how ableism functions (2009, p. 6). To identify and start to dismantle ableism as it acts through discourse, I started playing with keywords that could be used to promote claims of ablebodiedness. As Cherney writes,

Disability is a loaded term, weighted down with tools and supplies insufficient for the

task of making difference. In ableist culture it is one thing to kill your own child, but an

entirely different thing to kill your own disabled child.17 Such baggage begs to be

17 This statement follows Cherney describing a news story about a man who killed his disabled daughter, which was covered by the media very differently than child murder in cases where the victim was not described as disabled. 169

unpacked. I seek to unload the term ‘disability’ by casting attention on ableism itself and

on the rhetorical mechanisms through which it operates. (location 204)

In order to cast attention on ableism in the social interaction for babyloss storytelling, I picked specific keywords that can be related to themes of disability, ableism, and health. For each of these words I provide the overall frequency in the corpus (number of times it appears) and the number of texts in which it appears (out of 100, so the percentage of stories in which the word shows up), shown in the table below. Then, I will offer my analysis of each of the keywords in order to “unload,” as Cherney puts it, what each word seems to be doing within this corpus of stories around the ideologies of ableism, disability, and babyloss. I do this by paying attention to the collocations, which are the words and phrases that frequently appear alongside these keywords in context, in order to highlight the terms’ rhetorical functions as they work in specific texts. My findings shed some light on how ableism impacts storytelling about babyloss.

Table 3

Keywords in the FOL corpus. TERM OCCURRANCES IN CORPUS PERCENT OF STORIES IN

WHICH TERM APPEARS

Perfect*18 145 54%

Disab* 2 2%

Defect 11 5%

Wrong 120 50%

18 The asterisk is a truncation mark which searches for the keyword to its left and with any series of letters and spaces that follow to the right. In this way, the asterisk enables me to search and include results including “perfect,” “perfectly,” “perfection,” “perfected,” etc. 170

Perfectly Pregnant

Perfect is defined as “having all the required or desirable elements, qualities, or characteristics; as good as it is possible to be.” Synonyms include ideal, optimal, model, without fault, unmarred, unimpaired, unblemished, flawless, exemplary, best, superb, exquisite, utopian, indefectible, free from any flaw or defect in condition or quality; faultless. Notice that many of the synonyms imply the un-ness of perfection by stating the unwanted opposite: blemish, impairment, flaw, defected/defective, faulty. In the interest of exploring the opposites of perfection, consider some of the common antonyms: imperfect, faulty, defective. For the purposes of considering how the term “perfect” has valences that are particularly apropos for narratives about pregnancy and pregnancy loss, consider the archaic verb form of “perfect”: to bring to completion; finish. It comes from the Middle English from Old French and Latin, from perfectus ‘completed’, from the verb perficere, from per- ‘through, completely’ + facere ‘do’.

Perfect literally meant “to do completely, to finish thoroughly.” Thus, insistence on perfection indicates both the adjectival quality of a baby in becoming as “perfect” in quality, without flaw, and the maternal role of producing, completing, the process without failing.

More than half of all the stories in the FOL corpus (54%) use the word “perfect” or one of its close relatives, and the rhetorical strength of claiming some kind of perfection within the context of what went happened in a wanted pregnancy is a helpful place to start. Keywords captured by “perfect*” appear in 145 times in the corpus. Babyloss writers’ use of “perfect,” with its two interconnected meanings—a quality of being without flaw and the act of completing—anticipates ableist responses by illustrating the magnitude of what was lost. A claim of perfection in babyloss stories generates irony and thereby compassion, because as

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readers we already know something is going to go catastrophically wrong. In “Miscarriage and the Stories We Live By” (2015), H. Lindemann argues that what happens throughout a wanted pregnancy is the development of a “thing of growing pricelessness,” as the woman’s “work of imaginative projection… nears completion; what was once proleptic has now almost caught up with itself” (p. 84). Babyloss writers describe their pregnancies as something to complete, and how they narrate their losses draws on prolepsis, a literary device in which the narrator treats a future state of affairs as if it already existed. The proleptic quality of calling a pregnancy

“perfect” presupposes the future successful completion of a pregnancy in the “childbearing teleology” (Scuro). Therefore babyloss writers using “perfect” to describe their pregnancies before finding out that something has gone wrong serves a proleptic purpose, which then strengthens the tragic turn when the baby dies.

Babyloss writers often describe the shock of the moment when they discover that their pregnancies will go uncompleted by looking back at their assumptions of perfection. For example, Alison’s baby’s heart stopped beating right before delivery and she writes about the foregone conclusion of her pregnancy.

I prayed throughout my pregnancy that my girl would have a head of dark hair, like me.

And she did. Maybe I should’ve prayed more for her health…how dare I take that for

granted. There was not a time during my pregnancy that I doubted she would be born

healthy and alive. How dare I be so bold. I already had one healthy pregnancy and one

perfect child – why would this be any different?” (Alison, emphasis added).

Alison wonders at her boldness, perhaps even her hubris, for “never doubting” her pregnancy, yet as I’ve already argued, pregnancy teleology and contemporary assumptions about biological progress served to reinforce such an assumption. The bestselling What to Expect When You’re

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Expecting series lays out in timeline form what each phase of pregnancy will bring, what is happening with the mother’s body, the baby’s development, and the seemingly guaranteed progress from conception to delivery.19 As Layne argues, “popular biomedical accounts of both fetal and child development that now form a mainstay of middle-class Americans’ experience of pregnancy and parenthood present a concentrated, telescoped view of” the belief in linear progress and achievement (Layne, p. 67). When fetuses don’t “develop properly” according to that biomedical chart, or when babies die, “these cherished narratives about the natural course of individual development” (Layne, p. 68) are challenged or demolished. Alison’s shock at her baby’s sudden death is more poignant because Alison did not see it coming: “Sometimes this just happens. Your baby is beautiful – perfect. Except she is dead.” The completion of her first pregnancy with no complications and the delivery of a healthy baby also contributed to Alison’s expectation that the same thing would happen again.

Sometimes the maternal narrator posits that their very inability to foresee the danger or the outcome of miscarriage or stillbirth was itself the cause—that the fact that they weren’t cognizant of the possibility of loss was in part what caused the death. For example, Alison’s musings, “Maybe I should’ve prayed more for her health…how dare I take that for granted.

There was not a time during my pregnancy that I doubted she would be born healthy and alive.

How dare I be so bold” (Alison). The hope—the boldness and lack of fear—itself becomes problematic and a possible cause of the baby’s death. After all, the baby was perfect and then she wasn’t, according to the narrative, so something external to the fetus must be at fault. Scuro

19 For a particularly fascinating study of the history of embryology and its limitations in understanding of and education around fetal development, see S. DiCaglio’s “Staging Embryos: Pregnancy, Temporality and the History of the Carnegie Stages of Embryo Development,” Body and Society 2017, Vol. 23(2) pp. 3–24. 173

argues against this construction of guilt, actively critiquing “the idea that the bearing of children is an ‘accomplishment’ because it is attached to the master narrative of neoliberal ideology.

Pregnancy, whichever way it goes, when in the function of a misogynist and neoliberal” (and, I would add here, ableist) “culture, with its corresponding mechanisms and affectations, is a trap, a setup. The failed or unwanted pregnancy becomes a ‘woman problem,’ or, worse, ‘her fault’”

(Scuro 2017, location 153). The idea that a pregnancy isn’t just a process but is already a guaranteed product—if one does the right things all the way through—is again, an ableist,

Puritan work-ethic assumption and influences how hard it can be to tell babyloss stories.

Perfect Babies

Ableism constructs difference as monstrous and unwanted by lauding normalcy and positioning disability as abject, so it is not surprising that babyloss writers defend their dead babies from abjection by describing them as perfect. Rhetorical claims about a perfect pregnancy and a perfectly developing fetus/baby segue into descriptions of the dead baby as “perfect,” the second key use of the word within the corpus. Babyloss narrators search for words to describe what it felt like to see their dead babies. For example, Nancy’s son was stillborn at 22 weeks, just over halfway through a 40 week pregnancy. At first she was afraid to see her son’s body: “We would switch back and forth on whether we wished to see him and on the scary memory that could remain in our memory by seeing his tiny fully undeveloped body” (Nancy). Ultimately

Nancy and her partner decided to see their baby, and Nancy writes, “His body was perfect and he looked just like his daddy.” This use of “perfect” is also reflected in the opening of this chapter,

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where one of the essayists in They Were Still Born asserts that her baby was perfectly healthy; this assertion confronts, without naming it, the specter of possible disability. These are not claims about the baby before birth or about the pregnancy being perfect, but about the physical qualities of the fetus or baby after birth. Along with “beautiful” and descriptions of who the baby most resembled, babyloss writers use “perfect” to express love and confusion:

● "He was so angelic, so perfect. What could have happened?" (Alyssa)

● “We also have some incredible pictures that a doctor at the hospital took, which

perfectly capture how perfect he was” (Amy)

● “she was forever sleeping. she was so perfect. There was nothing wrong with her"

(Ashleigh)

● “But my favorite feature of yours was your ribs. They were so delicate and

perfect. My midwife arrived and checked you out and told us you looked perfect”

(Ashley)

● “She was beautiful and perfect" (Catherine)

● “the doctor confirmed that Jyson did not survive. He was 6 lbs 8 oz and did I

mention he was gorgeous? He was. Everything about him was perfect.”

(La’Porchia)

● “She was absolutely perfect in every way possible” (Chelsea)

● “He weighed 5 pounds 10.7 ounces and was 21 inches long. He had my husband’s

family’s cheeks but I think he had my nose. Even though my husband thinks it

was his nose. I know it was mine. His lips are his own. They are too perfect to be

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either Steve’s or mine. They are his own, perfectly shaped lips. He was perfect. He

remains perfect in my memory for the rest of my life.” (Kerry)

That last passage from Kerry, above, makes explicit what is implicit in many of the assertions of perfection throughout babyloss narratives as a genre: the baby “remains perfect in my memory for the rest of my life.” This sentiment exemplifies the “child in mind” (Bueno 2019): the loved, anticipated, healthy baby who was expected to join the family. But the perfect qualities that were envisioned remain through these social storytelling projects that sustain the value and desirability of a child in mind without blemish or difference.

“Nothing was wrong with her”

If perfect is a theme in more than 53% of the narratives in my corpus, what about its near opposite? “Perfect” and “wrong” both appear roughly the same number of times in the corpus:

120 occurrences each, and in similar proportions as well: 53% of the narratives include “perfect” and 55% include the word “wrong.” So are the concepts of “perfect” and “wrong” two sides of the same coin? My analysis finds that while perfect most often applies to the pregnancy and to the baby, “wrong” nearly always applies to the situation as opposed to the baby in babyloss narratives. When “perfect” shows up it is an assertion about the state of things as they pertain to the progress of the pregnancy and the quality of perfection in the fetus/baby. In contrast,

“wrong” shows up when the narrator describes feeling like something has changed for the negative. For example, here are some examples from the corpus:

● “I woke up and felt like something was wrong. I hadn’t felt her kick yet and that

wasn’t normal.” (Briana)

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● “I just knew in my heart something was wrong despite what everyone was

saying.” (Tabitha)

● “About a week before our scheduled gender ultrasound, I told my husband,

‘Something isn’t right. I feel like there’s something wrong.’” (Jennyfer)

● “After several seconds of silence, there was no heartbeat heard at all. I knew

instantly that something was wrong.” (Brittany 2)

The point in these narratives when the writers say something is wrong, feels wrong, has gone wrong, are a form of foreshadowing. These are the early indications that something is going amiss, or that the narrator has a suspicion that something has already happened to derail the pregnancy from its anticipated trajectory to a different outcome. A mention that something may be “wrong” is a foreshadowing and using “wrong” in this way helps babyloss narrators communicate that something is happening to them, beyond their control, as opposed to something wrong with them or wrong with their babies.

In addition to flagging a turn in the story where progress was diverted from the proscribed and anticipated progression, the term “wrong” also shows up in the context of maternal musings on what the woman did that may have caused the miscarriage or stillbirth, which relates to a fear of judgement on the part of listeners/readers. As an adverb, “wrong” means to do something in an unsuitable or undesirable manner or direction. In the corpus, some maternal narrators grapple with whether something they did in fact caused the problem. For example, Shenecia writes, “Where did I go wrong with taking care of myself?” Shanecia’s daughter likely died of Turners Syndrome, although the final lab results were inconclusive because of a delay in the lab picking up the tissue samples. This means that “we will never know for sure… it just kills me. I will ALWAYS WONDER,” Shanecia writes (original emphasis).

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Yet the wrongness was not lodged in her baby; instead, Shanecia asks the rhetorical question trying to figure out “where” she went “wrong with taking care of [her]self.”

Questioning what went wrong is a sense-making exercise and also perhaps cedes some ground to a babyloss story reader who assumes a miscarriage or stillbirth indicates a failure on the part of the mother. Shanecia’s reflection, “I will always wonder,” reverberates with the question of blame and causality, of whether there was some other cause of her baby’s death. The question of what went wrong appears to be a part of “presenting an identity that others can recognize and hold us to” means offering that “identity [in] recognizable narrative form. Doing so requires that we draw on the sense-making resources of the various communities in which we are embedded,” write S. Hardy and R. Kukla in their study of how women make sense of miscarriage in online spaces (2015, p. 108). Without a definitive answer, Shanecia asks what she may have done wrong and the inconclusive test results about whether her daughter’s demise was caused by a genetic condition cast doubt on how she tells her story. The inconclusiveness of the genetic testing leaves Shanecia in a limbo and therefore a fragile position in telling her story.

Indeed, about half of all stillbirths and a greater percentage of miscarriages never have a formal diagnosis of what caused the death.20 The unknowability leaves babyloss storytellers open to potential criticism or judgement for having not done everything they could have to ensure a healthy delivery.

20 The frequency and difficulty of living without an answer is reflected on the FOL website with the popular inclusion of ‘tags’ that contributors can use to categorize their stories; two of the options are “unexplained loss” and “unknown reason.” These tags are hypertext recognition that not every babyloss storyteller has an answer to the question of what went “wrong.”

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The question of maternal guilt because of failing to produce a healthy, full term infant is especially hard for women who experience miscarriages and other early term losses; many of these loss experiences are characterized by lack of societal understanding and highly ableist responses. Chelsey had two chemical pregnancies21 and one 8-week miscarriage. After her miscarriage at 8 weeks, Chelsey grieved desolately,

the body I was trapped in was my enemy. I spent weeks not talking to anyone and

shaming myself with guilt and anger. My browser history was full of ‘can this cause

miscarriage’ ‘can that kill a baby’. I had to find out what I did wrong because clearly

it was my fault. As far as I was concerned I was a failure as a wife, a failure as a mother,

a failure as a woman. I became consumed with researching and reading until 4am every

night about miscarriages and I had my theories about what I did wrong. I lost sight of

who I was. (emphasis added)

Wrong is something that is done: a lack, an action that caused ills. Yet Chelsey’s memories about the immediate aftermath of her miscarriages and feelings of guilt morph at the end of her post.

Instead of researching what she may have done wrong, Chelsey started seeking out support from others who had similar losses. “I came across so many women sharing their stories... I was reminded of the strength and courage it takes to share our stories. That our stories are important.”

Chelsey made sense of her losses and was able to move through the unanswerable questions about why her pregnancies each ended so early, and she felt better when she found stories told by other babyloss women. When she stopped blaming herself and berating herself for her losses, she

21 A chemical pregnancy is when a miscarriage occurs soon after implantation. A chemical pregnancy is diagnosed when a pregnancy test (urine or blood) is positive but then the levels begin to drop off and the woman has a period, sometimes heavier than normal. This is one of the earliest kinds of pregnancy loss, happening within one to two weeks after conception. 179

found meaning in the “strength and courage” that she and others like her enacted through talking about their loss experiences. Although she may have experienced guilt and confusion, it is through the act of narrating her story and reading the stories of others that Chelsey could accept that these things happen and it is not her fault.

In contrast to how “wrong” appears in the corpus when writers worry about their own shortcomings and failures, wrong as it refers to the baby collocates with “nothing” and “not.” For example,

● “Nothing was found wrong with Joel; he was perfect in every way with not a

blemish on him, which was strange as both my husband and I have freckles and

moles.” (Wendy)

● “She looked just like her big brother and had his head full of hair except hers was

a little lighter. Nothing was wrong with her.” (Catherine)

● “She was forever sleeping. She was so perfect. There was nothing wrong with her,

she literally was a sleeping angel.” (Ashleigh)

The position of this use of “wrong” is later in the stories and typically functions as part of a description of the baby after birth and parallels how babyloss writers use “perfect” as an adjective to talk about their babies. Even in narratives when the fetal demise was known to be caused by significant health issues before birth such as congenital or genetic problems, none of the narratives state “something was wrong with” the baby. That is a pretty stark finding.22

22 I pause here to acknowledge that it is possible that the narratives that have been submitted to the FOL website may be less likely than statistically representational babylosses that are of fetuses/infants with major birth defects. Bereaved parents whose fetuses/infants had confirmed genetic or gross abnormalities may be less willing to tell their stories in public for fear that societal rejection and judgement of disabled individuals might further stigmatize an already stigmatizing loss story. 180

One particular appearance of the word “wrong” deserves special attention, as it performs a startling rhetorical sense-making move that attempts to explain why an early miscarriage might occur and simultaneously portrays a somewhat ableist ideology. Lindsay concludes her babyloss story with a spiritually-inflected explanation for why a pregnancy might not work out, but it does so through ableist rhetoric.

I leave you [the readers] with something that does give me hope: my step-sister told me

that after her first pregnancy ended in a miscarriage a friend told her that your baby

enters, sees something is wrong, and has to leave, but that same baby, that same soul,

comes back to you later. She went on to have three more miscarriages before she

delivered her son. (Lindsay, emphasis added)

There are at least two different ways to interpret this explanation for an early pregnancy loss proposed by the writer. The question is, what is the “something” that the baby sees is “wrong”?

It could be the situation, such as in the passages I cite above where something about the pregnancy or the uterine environment has gone wrong. In that case, the wrongness would be situational and contextual, perhaps not lodged in wrongness of an individual body, whether maternal or fetal. However, Lindsay’s story, told third-hand as a woman’s story passed by word of mouth from woman to woman, is also that the baby is conflated with “that same soul” that comes back to enter a different body. In this interpretation, Lindsay’s postulation reinforces the body/mind binary and implies that a soul is distinct from and superior to a body. Although the word “body” isn’t used in this passage, the writer suggests a materialist/supernatural divide over which the baby’s soul makes a decision about the rightness of the body it would be born into.

Attending to where and how the word “wrong” appears in the corpus helps to shed light on the assertions that bereaved narrators make in anticipating and responding to potentially

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ableist reactions from listeners. The overwhelming collocation of “wrong” with terms relating to situational and causal contexts, not with the health or disability status of the babies, indicates that the concept of wrongness is about what went wrong, not what was wrong. In a sense, this rhetorical impulse mirrors the social model of disability in positing problematic conditions to the situation, not to the individual body. The stories on FOL grapple with the question of “why” wanted babies die before they are born, and the parents consistently frame the question of what happened, what went wrong, as a failure of the pregnancy or a fluke, act of God/nature, or an anomaly, not as because of a shortcoming or wrongness of the baby.

Defect and Disab*

Given what I have just shown about how language and narrative causality function in alternatively resisting ableist ideology and sometimes falling into it, I now turn to where explicit terms about disability and birth defects show up in the corpus. As the chart above indicates, there are startlingly few occurrences of my two keywords, disab* and defect*. For defect*, there are only 19 instances and they appear in just 8 of the 100 texts. Of the eight writers who use the word “defect” or “defects,” only five of them use it to describe fetuses or babies who did have defects.

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Table 4

FOL stories using defect* to refer to the baby.

Writer Use Context

Brittany Ultrasound showed some Baby died at 31 weeks

defects that were

incompatible with life

Cristina Only after no heartbeat on Confirmed genetic condition,

ultrasound, doctor suggests Turner’s, upon delivery.

that there are signs of

chromosomal abnormality

Sara Diagnosis of a heart defect, Baby died before birth.

doctors made plans for

surgery after birth.

Shameema Emergency C-section when Confirmed transposition of

baby wasn’t thriving. great arteries. Survived C-

section and lived a couple

weeks before his heart failed.

Elisha An ultrasound showed some Baby died at 31 weeks

defects and parents were told

they were incompatible with

life.

These snapshot contexts of these stories illustrate confirmed cases of birth defects in babies who died. Sara, whose baby was prenatally diagnosed with endocardial cushion defect, reflects that

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the ease with which she got pregnant gave her a false sense of security about the pregnancy outcome. Like Scuro describes, the assumption that pregnancy automatically equals the production of a baby catches expectant parents off guard. Sara writes,

Like any other couple who was expecting a child, we were so excited for the anatomy

scan. You don’t think about organs forming, you don’t think about your blood sugar

levels at conception and did this cause a heart defect, you are thinking about

gender! We were having a baby boy. But after the scan I entered the doctor’s office and

was shot straight into my heart. (Sara, emphasis added)

The social construction of pregnancy and what an ultrasound can reveal (the sex of the unborn baby and the confirmation of conception date and estimated delivery date) assumes the teleology of pregnancy, a trajectory that starts at conception and carried through to delivery. Sara admits it is only after something appears to be “off” that she thought about “organs forming” and possible causes of “a heart defect.” Before there was an indication that something might be wrong, she had assumed that normal would be healthy, and healthy would mean fully able-bodied. It is only when something goes amiss that Sara realizes that something could be otherwise, and in portraying this horrible realization to her readers, Sara alludes to ableist preconceptions about how bodies work and how pregnancies should always progress.

There also were three intriguing appearances of the word “defect” that are worth analyzing because they imagine a disability or defect as the less negative of possible pregnancy outcomes. For example, Megan finds out that her unborn baby has died in a routine ultrasound at

20 weeks. At that point Megan calls her mother but is so emotional on the phone that she cannot explain that her son has died, just begs her mom to come. Only a couple hours later while her mother is en route does Megan realize, speaking to her son, “At the time, she was driving here

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and thinking that maybe you had a birth defect or you were going to be born with a disability, I hadn’t told her that you died.” This appearance of “disability” is unusual in that it acknowledges that could be one possible outcome of a diagnostic ultrasound; having to tell her mother than the baby has been diagnosed with a “birth defect” or would be “born with a disability,” Megan implies, would potentially be upsetting but not as bad as what has actually happened in reality.

When I search the 146,144 word corpus, “disab*” appears only twice; the near absence of the words disabled and disability in these stories is profound and indicates a marked resistance on the part of babyloss writers to speak about the subject. The only instance in which the word disab* refers to a baby is in Megan’s narrative, which appears above. Megan imagines her mother imagining the worst after receiving a phone call from Megan after her ultrasound: maybe her grandbaby would be “born with a disability.” The only other inclusion of “disab*” is in the context of maternal disability leave after experiencing a second trimester miscarriage. The mother, Thithui, writes about attending weekly psychotherapy appointments “during [her] 3 month of disability.” Thus, the term disability is used to refer to a formally recognized period of time in which the narrator does not have to work and has access to medical and support services.

In other words, neither of the two uses of “disab*” refer to confirmed problems with the baby or to a maternal identity of disability.

Again, my interest in pulling out explicit references to disability, which are nearly entirely absent, is not to critique, judge, or dismiss the cultural work these narrators are doing by publicly disclosing their very personal losses and grief. To the contrary, I interpret the absence of literal references to disability as analogous to the longstanding silence around babyloss bereavement in general. A “benevolent conspiracy of silence” (Jiménez, 1982, xv) used to shroud stories about miscarriage and stillbirth, which made it very hard for people to talk about

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their dead babes. Similarly, stories about people with disabilities, or the suggestion of disability, may also be met with societal resistance, the discomfort of listeners and dismissive ideological views like ableism walling off and isolating those who would speak of difficult and taboo subjects. Even for those who are brave enough to speak publically about their babyloss experiences, an already somewhat taboo subject, there are still aspects of babyloss that are hard to narrate, and one of those elements is the subject of threatened or actual disability, because we live in an ableist society.

Implications of Ableist Underpinnings

In the previous chapters of this dissertation I traced the social and rhetorical interactions through which stories of babyloss are told. I have highlighted the co-creative and collaborative ways in which women narrate personal experiences with miscarriage and stillbirth with an eye for the presence of generous and generative listeners enables stories that otherwise would likely remain silenced to come into the world. In this chapter I asked about what limitations, strictures, enforced absences those same audiences/listeners might enforce, intentionally or unwittingly.

The implications of locating consequences to ableism within babyloss storytelling are both site- specific and broadly applicable beyond personal narratives about pregnancy. For anyone interested in women’s reproductive lives in any sense, the findings from my research demonstrate the ways in which disability is always central to the questions of conception, pregnancy, labor and delivery. Indeed, as Siebers argues, reproduction

marks sexuality as a privileged index of human ability. In fact, the ideology of ability

underlies the imperative to reproduce at many levels, establishing whether an individual

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supposedly represents a quality human being. First, sex appeal determines the

opportunity to have sex… Second, a person must be able physically and mentally to have

sex. Third, a person must be able to reproduce, to be either virile or fertile. To fail to be

able to reproduce is somehow to fail as a human being. Finally, successful reproduction is

thought to pass our essential abilities and qualities to our children. (1995, p. 140)

Disability and sex are entangled, as are sex, race, reproductive justice, and parental desire for a certain ‘kind’ of baby. In order to theorize a broader range of what women experience through pregnancy, whether that pregnancy results in a living baby or not, we must take disability and our culture’s ableist ideology into account.

Social spaces like FOL can limit even as they permit details and interpretations of lived experiences to be added to the chorus of storytellers doing griefwork. In asking questions like

Cherney offers, about how ableism is enacted and enforced in different spaces, I have tried to think with disability and ableist rhetoric. For as Campbell argues,

disability and disabled bodies are effectively positioned in the nether regions of

‘unthought.’ For the ongoing stability of ableism, a diffuse network of thought depends

upon the capacity of that network to ‘shut away,’ to exteriorise, and unthink disability

and its resemblance to the essential (ableist) self. (2009, p. 18)

Therefore, just by reading these babyloss stories with an openness and inquisitiveness about how ableist assumptions and anti-disability rhetoric may influence how the writers describe themselves and their babies opens up new ways of moving with grief. In particular, I see babyloss writers skirting the question of the precariousness of life, particularly life before birth, as it relates to non-normative bodies and their own questions about identities as women whose

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bodies have “failed.” In applied medical communication and also in therapeutic spaces, these findings can help health professionals better support bereaved families with a broader understanding of how grief about the end of a wanted pregnancy intersects with disability and ableist ideologies.

For the fields of feminist rhetoric and narrative theory more broadly, I see these findings about ableist ideology as a cautionary salve, a reminder to recall ourselves to critical interpretation of the ways that even empowering and collaborative discourse communities can still enact silencing exclusions about difference. As Royster and Kirsch argue in Feminist

Rhetorical Practices, the “intersection of genre, technology, and rhetorical agency” on the

Internet “allows women from many locations and backgrounds to share information and lived experiences much more widely than local networks of friends, family, participants in birthing classes, and medical settings have traditionally allowed” (p. 65). In this acclamation and embrace of “rhetorical activism” made possible through accessibility to blogs, new audiences, and authorial agency, we need to still tune into the ways in which even newly gained rhetorical agency can unwittingly reify ableist views of embodiment, production, labor, and human value.

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Chapter 8

WHAT NOW? IMPLICATIONS FOR BABYLOSS STORYTELLING

The disinterested young receptionist behind the gynecology practice front desk hands me a clipboard with the chained-on pen. “Fill this out and then bring it back to me,” she instructs, already looking back at her computer monitor. The desk phone rings and she reaches to answer.

I sit down in one of the gray reception area chairs with the armrests that are slightly too low for my height. The form is a standard one and I start to fill in the answers by rote: name, date of birth, ethnicity, contact details. Then my eyes register the next lines: “Number of pregnancies?” 4. “Number of live births? Vaginal or Cesarean?” 3 live births, vaginal. And a line under to explain: second baby stillborn at 36 weeks in 2006, vaginal delivery. It isn’t hard to write that anymore; I don’t well up or feel an ache in my chest. I accept the three inches of allocated blank space as what is open for me to put the medical details of Beatrice’s life and death. Yet it is still jarring.

It’s jarring because although it’s been 14 years since I buried my daughter, it still feels strange to notice the ways that certain people and systems are only willing to entertain her existence and my grief within tiny circumscribed boxes. My new gynecologist needs to know about my gravid history—when I was pregnant, for how long, what happened, and whether any of that data could be relevant to my current

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physical or sexual health. My pregnancy and baby’s death are seen solely through a medical framework, as biological events that occurred in the past and should be noted on this paper form only insofar as they may grant the doctor insight into current or future symptoms. The fact that I plan to have no more pregnancies makes Beatrice’s death superfluous, extraneous, ultimately uninformative. It is medically and historically in the past, yet there is the space on the form, a gap all too small to do more than fill in the quantifiable details.

I finish filling in my insurance details quickly and return the clipboard to the front desk person. Then I sit down to wait. I’m not sure what happens to the form at that point, whether the information I gave is immediately entered into the computer files or if that happens later. But when I am called back to an examination room by a nurse fifteen minutes later, she has my new file and with it the patient history form I just filled in.

She’s much friendlier than the receptionist. She introduces herself by name and notes that

I’m a new patient at the practice. I step on the scale and she adds my weight to my file. Then she flips to the page about my gynecological history.

How will she handle it? I wonder. It’s different each time, at different practices and hospitals, with different practitioners. This one pauses, her fingers holding the topmost paper up as she scans over my answers.

I know she sees it, the handwritten mini-report of my baby’s death. But she doesn’t say anything. Doesn’t acknowledge or ask a question.

“So, what brings you in today?” she asks, a smile returning to her face. “Any particular symptoms, or just a routine appointment? And since you’re new here, have you asked your old practice to send your medical records over to us?”

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In this encounter, the fact of babyloss is viewed as a purely medical event, and its importance (or lack thereof) is determined by the medical professional. Through the completion of the form, I, as a patient, respond to an invitation for a certain kind of telling, one that privileges facts, numbers, and dates. Because this interaction occurs at the intersection of business and medicine-as-science, as S. Popham explains in “Forms as Boundary Genres in

Medicine, Science, and Business,” the patient form as I was asked to fill it in is a means through which

information about the patient (a complex and unique being) becomes simplified and

distilled into small bits of medical data about laboratory test results, radiological

examinations, blood pressure readings, and diagnostic theories. The role of the patient is

broken down into scientifically observable small pieces of data and is reassembled into

the theories of diagnosis that will enable the physician to act or treat. (2015, pp. 290-91)

In this situation I found myself in an interpersonal interaction in which I was required to divulge details about my daughter’s stillbirth, but the request for information only permitted a very distant narration. And yet this, too, is a scene for babyloss storytelling, albeit a very different one from the scenes I examine elsewhere in this dissertation. It is important to recognize that there are many other places where babyloss individuals are either required to or would choose to tell about their dead babies, because these interactions also highly influence public discourse about babyloss and what it means. A woman who has had an ectopic pregnancy, miscarriage, or stillbirth is asked to provide a very particular kind of medically-based narrative about what happened, and the personal response she gets from the health care professional she next encounters either opens up or closes down storytelling that could help.

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Across these stories and my project as I have conducted it, I have listened to babyloss stories and asked questions about where they are told and how, about the relationships between the teller and their listeners, and about how the stories are then packaged and circulated beyond the original context; I have come away with findings that I hope will be able to move out from this dissertation and into the world in productive, healing, and positive ways. Each of my findings overlaps and interlaces with each other, and there are multiples ways that they can inform communication at systems’ level, across organizational levels, and within interpersonal interactions. The findings I have developed in my work with babyloss stories and how women tell them, as well as my own insights in the years since my baby’s death, have widespread implications that cut across disciplines. For example, rhetoricians and narrative theorists who are interested in where and how stories emerge and are repackaged in other containers may take up

Ochs and Capps dimensions of everyday stories, as I did, to consider the stories they study. The reclamation of nuanced maternal grief as a valid subject of study is also an outcome I hope this project validates, encouraging feminist researchers to take seriously women’s feelings about motherhood, social activities reinforcing maternity and motherhood, and activist actions groups of mothers take together. With both the method of my analysis and the content of these stories, I hope that the findings can inform and improve how babyloss families receive support, make meaning of their grief, and even how babyloss experiences unfold. Finally, there also are implications for people who have experienced babyloss and for those who love them.

Babyloss Stories are not Medical Stories

Firstly, and perhaps an umbrella finding with the broadest possible application, is that babyloss parents do not experience their babies’ deaths as purely medical or purely

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psychological events. Much of the stories and scholarship about this subject bear the undercurrent of this paradigm. Babyloss is not just medical, nor is just social or just emotional.

Experiencing the end of a wanted pregnancy without a baby occurs at the overlapping intersections of biology and medicine, as well as the social, psychological, historical, and emotional worlds of those involved. To reduce babyloss and babyloss stories to belonging in just one of these domains oversimplifies at best and negates at worst the lived experiences of the women who miscarry or have stillborn babies. This overarching argument I’m making for accounting for the complexity of babyloss means that babyloss stories don’t “belong” some places and should be forbidden elsewhere. Losing a baby is not purely private nor is it fully public; it is something that happens inside the maternal body but is not just of the maternal body; it is something that happens in a particular moment but it is not over in that moment.

Social Resistance and The Realness Problem Persist

Babyloss storytellers often have already personally encountered resistance to expressing grief and dealt with neglect of their bereaved babyloss identities; therefore they often tell their narratives in anticipation of continued disenfranchisement (Doka 1989). In particular, the realness problem (Layne 2003, p. 17) is a pervasive ideological force against which babyloss individuals speak back: courageous individuals like writers who submit to FOL, those who found nonprofits to raise awareness and money for babyloss causes, and people who publically speak out about their babylosses challenge and dismantle the social contracts that erect a silencing discourse about pregnancy loss. Yet even these individual and collective actions have not fully made babyloss a topic that is well understood by most people, which results in continued stigma and lack of awareness about its frequency and impact.

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The ways that we talk about pregnancy, how we think about it, what assumptions we make about what a healthy pregnancy is and what goes wrong when a pregnancy “fails” are built into cultural stories and norms. When a woman becomes pregnant there are layers of assumptions about all of those things, and common narratives and shortcuts that in large part define how the condition of pregnancy is culturally constructed. The meaning of what a pregnancy is, what it does, who a good or bad expectant mother, what a pregnancy that ends without a baby means... there are layers of assumptions about all of those things. Just like with any dominant cultural narrative, there are things that are left out, assumed, neglected, and played up. In the case of dominant cultural narratives about pregnancy, many millions of women’s experiences of having a miscarriage or stillbirth are left out, which leaves them without cultural scripts for making sense of what has happened and how to move forward.

In considering the ways in which increased visibility and attention to babyloss stories has somewhat countered the realness problem but not fully eradicated it, I propose that we continue doing the collective work of acknowledging the veracity of each person’s grief. To be bereaved is to be separated from someone or something precious. The old saying about being kind to everyone because everyone is fighting a battle and dealing with traumas and wounds you know nothing about may be a cliché, but like most clichés it contains a kernel of truth. My research with babyloss has shown that babyloss grief, particularly after a few months or a year has passed, can look different than other kinds of grief. In particular, I’m thinking of babyloss writers who suggest the importance of friends and family remembering the baby who died months or years later, long after the initial round of grief; someone who has had a parent or sibling die would never be expected to “get over it,” perhaps in part because no one would propose that you could replace them by getting a new one. Yet babyloss parents sometimes find that even well-meaning

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loved ones act as though the death of a wanted baby can be healed by having another baby. Apart from the fact that this isn’t always possible, this way of thinking about a pregnancy loss as something that can be redeemed by the arrival of a new subsequent baby reinforces ‘the realness problem’—that assumes that because a baby didn’t live outside of their mother’s body that they lack identifying significance for the parents.

Everyone knows someone who has had a miscarriage or stillbirth, and we can all do small things to acknowledge those losses and thereby challenge the assumption that these babies weren’t real. There are many ways to do so, including by remaining present when someone mentions that they have had a loss. By remaining present, I mean holding space, not turning away, staying there in the conversation, even if you don’t know what to say or worry you’ll say the wrong thing. There is value in cultivating the skill of compassionate, engaged listening, and that value extends far beyond being better companions for people who have endured babyloss.

This ability to hold space and take as real someone else’s feelings and story about those feelings is a trait of emotional maturity. It’s something that we all can always improve, and it is a skill that, once cultivated, will make us better at handling communication across different social, rhetorical, and interpersonal settings.

Listening is Co-Telling

Over and again in this project I traced the role that listeners play in helping difficult, painful, complex narratives be told. For people who want to talk about their dead babies, having someone who is willing to listen and ask simple, open-ended questions is key. As Bueno (2019) explains, despite the prevalence of miscarriage, “we have long been unable to talk about

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miscarriage in any breadth or depth. If we do, we tend to do so awkwardly, quickly, and in the most general terms. We squirm, we whisper, we avoid asking questions” (p. x). The difficulty of telling a story of a miscarriage, especially, as opposed to a third trimester loss when the pregnancy is further along and the delivered baby is more recognizably human, highlights the difficulty of making sense without compassionate listeners. As FOL writer Jaime writes, “ASK

ME ABOUT MY SON! I want to talk about him! Honestly! (Jaime, original emphasis). Not all babyloss parents want to talk about their experiences, but for those who do, finding a listener makes a difference in the level of support they feel. As I showed in chapters 3 and 5 of this dissertation, the story that is able to be told comes into being in the presence of a listener, a role which may seem passive but is not. To listen is to be a co-telling companion, to help a sense- making story to emerge in conversation, even if the listener isn’t themselves saying very much

(Ochs & Capps 2004).

My research with babyloss stories shows that bereaved parents may want to talk about and tell their stories over a longer period of time than is sometimes consider socially acceptable.

The desire to talk about and make sense of one’s babyloss experience with a compassionate listener doesn’t end at a certain point. Indeed, the stories I read often defend and perform a prolonged grief process in which storytelling over time is a major component. As DeFrain et al. posit in a chapter about how bereaved parents described their support systems, “no one seems to understand how long it takes” (1986, p. 119) to “recover” and heal (p. 118). DeFrain et al. quote one research participant as saying,

We have had a lot of good friends who were very supportive in the early stages. It was

appreciated then, and I told some of them that. The problem now after about five months

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is that people think everything should be okay. Unfortunately, it takes longer. (1986, p.

119)

As I illustrated in my story about filling out medical forms at a new women’s health practice, the passage of time does not empty a babyloss of emotion or significance. A practical implication of my finding about listening/co-telling as central to healing and reconstructing bereaved identity over time is that bystanders (professional and personal) can play a positive role in showing that it’s okay to talk about a baby, even (or especially) if the death was many years ago. My research finds that the length of time that has passed since a babyloss cannot be interpreted to mean that the feelings associated with that baby are all resolved. As is evidenced in stories that are written and posted on Faces of Loss a year, three years, even 10 or more years after the miscarriage or stillbirth, bereaved women may continue to tell and even revise their narratives as time passes.

The “Child in Mind” Paradigm of Babyloss Storytelling is Undertaken Over Time

Understanding that people who endure babyloss aren’t just grieving the end of a pregnancy can help raise compassion and through that raise levels of support. Because babyloss families are grappling with the death of a “child in mind” (Bueno), the psychological existence projects forward in time to a person who would have taken up residence in their families for many years to come. This way of framing what has been lost can be helpful in authorizing the idea of parenting a child’s memory,23 through actions like ceremony, rituals, making new traditions for birthdays and holidays, doing acts of service for others in memory of your baby

23“The MISS Foundation has been promoting this for 25 years but I don't know if anything in anecdote preceded that idea” (J. Cacciatore, email 23 May 2020). 202

(Atlas 2010). As FOL writer Amy, explains, her son’s death right before birth is a loss of a

“child in mind” in that their family

will forever be incomplete… We’ll miss him on holidays, during family events, in family

pictures, on Mother’s Day, on Father’s Day, and especially on [his birthday]. We’ll…

miss him as the age that he would have been. We’ll wonder what his personality would

have been like, what his interests would have been, and what he would have looked like

as he grew up. (Amy)

Ollie’s death and its implications extend far into the future, with the destruction of all the time they would have had together as a family.

Real world implications for the “child in mind” theory of babyloss grief includes interpersonal as well as systems-level changes. At the interpersonal level, people can learn to ask about individual qualities and details, such as the baby’s name, what they were like in utero

(many babyloss writers describe personality differences across their pregnancies such as levels of active movement, sleeping and moving patterns at different times of day, extra-uterine sensory inputs that their babies liked or didn’t like). Instead of just asking about what happened, when, or about why, listeners can engage with the oft-neglected aspects of what happened before a babyloss and then in the years since. At a systems level, this finding suggests that making official acknowledgements of babyloss as a phenomenon can also validate its validity. For example,

October is already Pregnancy and Infant Loss Awareness Month in the US and similar recognitions are held in other countries. When organizations and companies participate in any way with events associated with babyloss, it cultivates backing beyond what any one individual or family can generate, which then can shift societal views of miscarriage and stillbirth from a minor loss to something significant.

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In large part the babyloss community and the storytelling that happens within it (in person, online, in print) are concerted efforts to find new metaphors, new ways of thinking about pregnancy, as well as what it means to be a mother. The question “am I a mother if I don’t have a living baby?” is one that is repeated across many forums for talking about loss experiences. Ideas about guilt for not preventing the loss and feeling like one should have known that something was wrong pervade these narratives. Although other members of the babyloss club frequently allude to how common these ideas are, it cannot just be a project undertaken by those who have themselves experienced loss. The broader culture at large can do some dismantling of old dominant biomedical narratives about pregnancy loss. In things that may seem unrelated to babyloss, such as the gender reveal party, the popularity of public pregnancy announcements, baby showers that proceed the delivery, and even holidays like Mother’s Day, let’s acknowledge the liminality of all pregnancies, not just those that end in miscarriage or stillbirth. A commitment to reproductive justice also implicates attending to the ways that race, ethnicity, nationality, class, sexual orientation, and other identities intersect with pregnancy and pregnancy loss experiences, as well as to seemingly unrelated social and political realities that restrict or support some people’s ability to bear and raise children in the way they see fit. Advocates who center the voices and stories of people of color show clearly that not all pregnancies are treated the same way and thus this has far-reaching implications for anyone interested in women’s narratives about motherhood, mothering, pregnancy, and babyloss.

Ableist Ideology Influences Social Views of Pregnancy and Babyloss Storying

One of the farthest reaching implications of this dissertation project comes from Chapter

7 with ableism and babyloss stories. As Cherney argues, “for ableist thinking to operate, is

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assumptions must be accepted by society at large, and these must be brought into use to engage specific situations and controversies?” (p. 145). By considering babyloss stories and asking

Cherney’s question, “How is this an ableist culture?” this dissertation sheds light both on the challenges faced by bereaved parents who want to talk about their babies and the other direction, on ableist assumptions. Pervasive ableism results in babyloss stories being told incompletely, making them a textual instantiation of the paradox babyloss parents face. While it is far beyond the scope of this dissertation to make larger claims about ableism, I hope other scholars will take up an ableist studies framework to ask questions of different data sets in order to contribute to a growing body of work that locates knotty tendrils of ableist thinking. I hope that the groundwork laid in Chapter 7 of this dissertation pushes forward our thinking about how very pervasive ableism is and how it has profoundly negative impacts on people of all ages and abilities.

Medical Care Through and After Babyloss Can Be Improved

Many of the implications I have suggested to this point have been applicable across a wide range of readers, but I want to explicitly point out that the people who may be most interested in this study’s implications are medical professionals. Pregnancy and labor and delivery providers such as fertility specialists, obstetricians and gynecologists, midwives, and nurses are recognized as those working most closely with families who are going through loss or a subsequent pregnancy. However, because of the long-lasting impact of babyloss, medical professionals not working specifically with pregnancy and birth may also benefit from taking this study’s findings onboard, including general practitioners and other specialists) and medical staff (front desk workers, intake nurses, billing accounts managers, receptionists).

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While members of the public at large may not have training, emotional awareness, or experience in fielding these kinds of narratives, within health care spaces this shouldn’t be the case. Many babyloss families want and need to have their babies recognized and validated as real, yet story after story in my study included references to health providers not always handling the communication about an impending or previous loss with compassion. There also are many stories in which the babyloss narrators describe with gratitude the compassion and tender care they received throughout their loss experiences. Within these stories there is collective testimony to how vital it is for staff and practitioners alike to see the role they play in the initial experience and impact of miscarriage and stillbirth. And with that comes an implication that training should be provided about communication practices in order to prepare them to listen well and to ask questions that open up babyloss storytelling in supported ways, rather than the current system focus on collecting facts and data for an intake form. Returning to the story I shared to open this chapter, it seems surprising and shortsighted to that there doesn’t seem to be a standard protocol for how the answers to questions on forms about babyloss might need more than just a quick once over and transfer to a computer record filing system.

Because medical settings require women to repeatedly report medical information that touches on babylosses, those who interact with bereaved women should receive routine communication training and professional development about sensitivity, holding space, asking good questions, and screening for patients who may need extra support (either with a nurse, doctor, midwife, or a counselor or therapist). Babyloss stories show that miscarriage and stillbirth, even if they are months or years in the past, may not feel historic to the patient, and medical professionals need to be trained accordingly. As Bueno puts it, “Miscarriage felt, at times, like an event of the present rather than the past” (p. 80), so this should be a part of helping

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health care providers identify chances to listen and offer support. The concept of parenting a baby’s memory can inform more compassionate care within medical conversations, which then may help facilitate healthy grief processes over time, instead of compressing bereaved maternal experiences into timelines that don’t actually fit those who are suffering in the aftermath of loss.

These findings apply most directly to medical professionals, but there are also education and support professionals who can apply these findings to their work as well, such as childbirth educators / birth support staff like doulas, lactation consultants, grief counselors and therapists.

Telling Personal Stories Can Help with Healing

My work with babyloss narratives has further strengthened my belief in the important role that writing personal narratives can play in healing and growth. Reading and analyzing the narratives included in my dissertation project leads me to see the continued value for bereaved people to write their own story over time. An interesting finding that ultimately did not fit into the scope of this project is how the length of time elapsed since the loss changes some of the resulting traits of the stories. In other words, someone whose baby was stillborn two weeks ago writes their story in a very different way than someone whose baby died two years ago. Looking back through my own writing about Beatrice’s death, I can see how the characteristics of how I tell the story have shifted dramatically; early on much of the story was about the sensory details and the very specific times and dates that things happened. My writing included a lot of questions, too, as I grappled with what had happened and why. Yet as time passes my writing perspective changes and I take up a different angle. A mentor I admire and was honored to apprentice with, Joan DelFatorre, leads writing as healing workshops for cancer patients and cancer survivors, and she starts every guided writing session with the assurance that it’s okay to

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write about the same thing over and over again, but that it’s important is to take a different angle on it so that you aren’t just reinscribing the trauma. The story that a bereaved parent will tell will change, because grief isn’t something that happens and then is done. My work with these stories has shown me that time and again, and the implication is that one of the greatest gifts a grieving person can give themselves is to take up the practice of writing about their loss at regular intervals.

Telling stories about things that happen to us enables us to organize and make sense of the world, that we see, hear, feel, and remember, permits us to plot story arcs through time

(Frank, 1995; Mattingly, 1998; Couser, 2009; Smith & Watson, 2010). Storytelling and listening are the social interactions through which help people make sense of traumatic and painful experiences in order to reconstitute their identities (Neimeyer, 2001; Nelson, 2001). Whether these stories are told in person orally, collaboratively like in support groups, in writing that is kept private or in writing that is shared with an audience online, telling stories about what has happened to us can be a valuable tool in understanding our lives and incorporating change into our identities. More specifically, people who go through the experience of pregnancy loss and share their stories with others describe how doing so enables them to make sense of their grief, find community for support, offer solidarity to others, bear witness to the value of their babies’ lives, and remember their babies.

Storytelling Helps Establish Community

This dissertation project has implications for how we all listen to stories and interpret the efficacy of storytelling actions for establishing and nourishing communities. As more social and

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rhetorical spaces developed in which babyloss parents felt safe and supported talking about their babies, babyloss stories have become richer and have found greater acceptance. People who tell their babyloss stories collectively help to raise awareness about the frequency and impact babyloss can have on the millions per year who experience miscarriage and stillbirth. These stories are shared to demonstrate solidarity, help others new to grief feel less isolated and lonely.

Now, with collective blogs and message boards and Facebook groups, people can tap into instant or nearly instant community. A person sobbing in a labor and delivery ward who has just heard the devastating words, “I’m sorry, there’s no heartbeat,” can pull up narratives on their phone of many others who have been down this path before them. In these spaces, some people may never explicitly introduce themselves or actively participate in the conversation. But in sharing and collecting and commenting on these stories online, babyloss writers establish a community of grievers.

Feminist researchers, especially rhetoricians, should not maintain “a studied silence on pregnancy loss,” lest they “surrender the discourse of pregnancy loss to antichoice activists”

(2003, p. 239), L. Layne warns. Women’s stories have long been neglected or seen as wholly private, sentimental, not worthy of recognition or serious study. Yet babyloss stories such as those told orally in support groups, written down and shared and commented on online, and in print circulation offer us important insights into the subject of babyloss. They also reveal a lot about the social life of stories, how the presence of a compassionate listener can help a person narrate a difficult to tell life experience. That’s the power of stories—they make visible the things in our lives that have impacted us, that have broken down our identities and reconstructed our futures. We all have the opportunity to cultivate ways to respond to grief stories in ways that

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are affirming and validating. We need to catch ourselves when we invite stories only to re-cast them into familiar cultural scripts.

My research findings highlight the ways that we are all both storytellers and audiences to others. As academics and as regular people, how can we all be a part of developing ways of responding to grief narratives that don’t simply reinforce the dominance of the ‘happy ending’ or

‘overcoming’ plotline? How can we better attend to the social and rhetorical conversations in which personal narratives are told? What other kinds of spaces already exist or could be created where these stories can be told, where grief can be affirmed, recognized, and supported rather than treated as something to hide and process alone? How might the advent of emerging technologies continue to enable grief storytelling by individuals and collectives? And finally, having seen the emergence of these stories become more public over the past few decades, how can we all put ourselves in the vulnerable position of storyteller and the sometimes even more vulnerable position of story listener?

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Couser, G.T. (2009). Signifying bodies: Disability in contemporary life writing. Ann

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DeFrain, J., Martens, L., Stork, J., and Stork, W. (1986). Stillborn: The invisible death.

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Frank, A. (1995). The wounded storyteller: Body, illness, ethics. Chicago: University of

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