Don’t say “the D word”: Exploring death taboo and biopower in pregnancy loss awareness advocacy

Lens of biopower

Because this study situates taboo as a mechanism of instilling and enforcing social order within the context of health, Foucault’s (1978) biopower is a particularly appropriate theoretical lens. Biopower can be defined as “numerous and diverse techniques for achieving the subjugation of bodies and the control of populations” (Foucault, 1978: 140). Within this framework, institutions such as government and biomedicine, often benefit from the social regulation of taboo to discipline individuals and control groups, particularly as it relates to life, death, and capitalism (Foucault, 1978). PR scholars have used biopower to explain practitioners as organizational activists (Holtzhausen and Voto, 2002), explicate how practitioners participate in forms of self-regulation (Place and Vardeman-Winter, 2013), and outline how PR plays a role in articulating population health (Place and Vardeman-Winter, 2016). However, we lack a connection between biopower and taboo which appears inherent in Foucault (1978) work, particularly the interplay between breaking norms and rules (e.g., taboos) and the resulting liberation of resistance (p. 6).

A lens of biopower to interrogate activist perceptions of constraints and resistance is particularly useful to this study for three reasons. Firstly, biopower is grounded in public health issues and health advocacy as acknowledged by Foucault’s (1987) focus on population health and PR scholars’ acknowledgment of PR as producing truth and exercising expertise about health (Place and Vardeman-Winter, 2016). Secondly, biopower reflects on governmental and institutional management of life and death in ways relevant to pregnancy loss and death taboo (Foucault, 1978). Thirdly, Foucault’s (1978) conceptualization of power is dynamic, and arguably optimistic, which complements a social change context that not only seeks to unveil oppression but also understand how to shape culture in ways that combat it. Specifically, the productive and inventive version of power present in Foucault’s (1978) work can help transcend the oversimplistic view of power as merely oppressive, and instead, frame it as flowing between and among actors’ relationships (Curtin, 2020; Place and Vardeman-Winter, 2013). In this sense, where social regulation lives so too are attempts to circumvent such regulation – working around and through the rules of a given time and place (Foucault, 1978). To be sure, advocacy and activism can propel such generative displays of power in health contexts (e.g., Bradley, 2021).

Regulating support: Avoiding and isolating loss families

The inability to talk freely about the death of a child can silence bereaved parents’ grieving processes, which limits how people can seek and access social and institutional support. Bailey, an advocate who started a local support group for parents, explained the loneliness that she felt after her loss as the inspiration to start her advocacy work. Her internal dialogue at the time of her loss was, “I must be really alone with this. It must not be happening to other people.” Claudia, an advocate/activist who works in policy settings, shared, “I think it’s an insanely isolating experience. It’s damaging when you think that you’re suffering through something alone.”

This isolation stems from the taboo and lack of awareness about pregnancy loss and stillbirth. Molly, an activist who started a coalition for pregnancy loss awareness after the loss of her daughter, explained that even when experiencing stillbirth she did not know what stillbirth was. She expanded, “That I think is really the crux of the problem here is that no one knows stillbirth still happens until it happens to you or someone that you care about.” Fara, an advocate with roughly two decades of experience, expressed that people treat this issue as “hush-hush” even though talking about it may help many bereaved families find comfort and support. Hattie, an advocate who works with non-profits/support groups, explained why she thinks this taboo and resulting isolation exist:

I think pregnancy loss is definitely taboo. People don’t want to talk about it. I think it’s extremely painful to talk about out-of-order deaths. I think it brings up incredibly difficult feelings for people. So in order, instead of leaning into it, the culture is to flee from it. As if it’s contagious. Like “I don’t want to talk about it. I don’t want to be around it. It will happen to me if I’m near it.”

Janine, an advocate who directs a local chapter of a faith-based pregnancy loss non-profit, explained her experience:

The overall goal is to bring more awareness to infants, infant loss, pregnancy loss, overall, but a subset of that is in the African American community because it, still to me, seems to be a taboo issue. It’s not even addressed. Honestly, from, at least from what I’ve heard, and having grown up as a Christian woman, it’s not even addressed in our churches.

This theme of avoidance and isolation as a form of regulation intersects with a central message that many participants wanted to share with bereaved parents – that they are not alone.

Regulating grief options: Invalidating and limiting remembrance

Relatedly, the taboo, avoidance, and resultant lack of knowledge about pregnancy loss means that people’s learned reactions to death include belittling the experience, which can regulate how people grieve. For instance, people may use euphemisms that make light of the loss (e.g., pregnancy loss instead of death of a baby) and these cultural norms also influence participants’ advocacy work. Molly expressed how she approaches this tension:

In general, we [advocacy coalition] prefer to be more on the side of using the actual terms, but at the same time, we also know, because of all the issues we’ve discussed, that a lot of people can’t hear it and will immediately tune us out. So, we do end up using the word “loss,” “baby loss,” “pregnancy loss” a lot, even though we would prefer to say “our babies died.” But we try to slip in the D word [death] there whenever we can. (laughs) Try to uh, to try to desensitize people to it.

People also say unhelpful things about death that are particularly hurtful for bereaved parents such as “maybe it wasn’t meant to be,” “at least you can get pregnant,” and “you can have another baby.” Oftentimes, people discount losses that are earlier in gestation. Janine recounted her experience, “it’s like this comparison thing going on. ‘Well, it’s different if you were 7 months pregnant, and you have a funeral.’ versus, ‘oh, that’s just a miscarriage.’ Hold on, what? So, then you get angry.”

Alongside invalidation, the taboo around death connects to a cultural assumption that honoring or remembering a dead baby is morbid, which limits how/how long parents are allowed to grieve and how advocates engage with remembrance. Tessa works closely with the topic of remembrance, as she helps provide cooling units in hospital rooms that allow parents time to interact with stillborn babies. She recounted a common question that she answers in her work, “because a lot of people were like ‘isn’t that morbid? Why would somebody want to spend time with a dead baby for a few days?’” Many participants expressed that the death of a baby brings grief for the future, which means that bereaved parents do not “get over” this loss. It often stays with them forever. Aria, an advocate who works in the health field, presented a reason why this loss changes a person for their entire life:

…we didn’t just lose our child. We lost all the potential, you know. If it was an athlete, we missed out on all of their games. We missed out on their birthdays. We missed out on first steps, first dances, weddings and all this, it’s not – So, that’s when I say grief is not linear. Like we missed out on so many other things that we had already conceived in our minds once we found out we were pregnant.

Hattie related this similar idea to culture and taboo as regulating grief:

And I think there’s a culture of “we, we need to move past this, we need to move on, we need to get over it” instead of the culture being “how do we integrate this loss into our life?”...So I think that the experience of remembering someone and the culture around remembrance is very limited for the outside public.

Relatedly, Dakota is an advocate who works in a medical context, and she emphasized that many burial rituals, which also serve a remembrance function, are not offered to parents because they may not align with U.S. cultural responses to pregnancy loss and/or may be burdensome for healthcare providers to facilitate. Despite this taboo about remembering as morbid, many interviewees shared that, in their experience, many bereaved parents want to remember their babies and that their advocacy seeks to open spaces for such memorialization.

Regulating healthcare: Lacking prevention and promoting erasure

Medical systems and biomedical contexts emerged as a primary site for witnessing taboos and the ways they constrain loss experiences. For example, participants discussed how doctors will warn about listeria or risks of caffeine consumption during pregnancy, but not stillbirth or pregnancy loss. Such avoidance of the topic served as a burden in advocacy work to build awareness for families. Rae, an advocate for a large non-profit shared,

You know, things that do not happen at the frequency that stillbirth does that I was being warned about but for some reason, talking to your patient about stillbirth is considered taboo, and doctors generally don’t. So then, it leaves, like – I didn’t know what to look for and what not to look for. I didn’t know what to do if something happened. So, I would just really hope that it would be talked about upfront to the patient, to the mother, as well as just education, because I think that’s important, and that can save lives.

Taboo keeps birthing people from knowing about the prevalence of, warning signs for, and actionable steps that may prevent some losses, though many cannot be prevented. As Molly asked of medical systems’ lack of preventative measures, “Why did no one ever tell me to sleep on my side and not my back? You know? Why, why isn’t anyone measuring my placenta?” Similarly, Phoebe, active in a coalition for pregnancy loss and stillbirth awareness, expressed frustration with doctors and the challenges in getting professional organizations, such as the American College of Obstetricians and Gynecologists (ACOG) to listen to parents, change practices, and provide essential testing that could prevent loss. In many cases, participants pointed out that medical providers are not trained well in pregnancy loss, and they often challenged medical expertise in their advocacy work. Claudia summarized it this way, “I think that our society tends to look to the healthcare providers as like the end-all be-all. They know everything. And guess what? They know nothing.”

The silence and avoidance of taboo also creates medical systems that tend to erase and ignore the experience of loss itself. Advocates described erasures such as being placed in medical spaces shared with pregnant/birthing people while grieving a loss and providers asking questions of bereaved parents that indicated they did not know that the loss occurred. Gabriella, who now runs an advocacy organization created in her son’s name, described leaving the hospital after her loss with a white box of her son’s things (paperwork, a mold of his feet, etc.). The hospital parking attendant, thinking the white box was filled with cake, asked if they could have some. Gabriella recounted, “And so I told her, ‘uhh so I came to the hospital with a baby and the only thing that I have left is this box.’” Participants clarified that it is the responsibility of all people in the medical system, doctors, nurses, front desk attendants, etc., to be trained on how to acknowledge and handle these losses.

Regulating interpretations: Conflating loss and abortion

The U.S. culture surrounding abortion also entangles with taboos in a variety of social, healthcare, and advocacy spaces and influences how people make meaning of pregnancy loss. As Molly explained about her plans to host a protest event with baby urns and coffins, which her colleagues worried would be seen as an anti-abortion protest, “anytime someone sees someone in this country talking about a baby who died their first thought is that it’s about abortion. Getting, breaking through this mental block that people have about the abortion debate is a huge, huge problem for all pregnancy loss advocacy and awareness.”

Some of the conflation may stem from the biomedicalization of pregnancy and medical terms to describe, categorize, and dehumanize losses. Janine said she was told she had a “spontaneous abortion” after her miscarriage. “Spontaneous abortion” is the common medical term for miscarriage but it brought confusion and distress to her because of the connotation that she purposefully terminated a pregnancy. Similarly, Hattie recounted termination for medical reasons as a misunderstood type of loss where parents may be labeled as ableist or get tied up in anti-abortion discussions during one of the most difficult decisions they will ever make for their families. Corrine summarized this point about the intersections of taboo, abortion, and pregnancy loss, “none of these families are walking around thinking ‘I had an abortion.’ They’re thinking, ‘Our baby died.’” Thus, abortion serves as a biomedical interpretation of the death of a baby that imposes meaning on bereaved parents and advocates engaging with bereavement.

Turning private issues into community and public health concerns

Grief does not happen in a vacuum, and advocates often want to show how the various communities of which a person is a part will entangle with the loss of a baby to refute taboo, garner attention, and build a wide support net for bereaved parents. Cindy advocates through a nationwide bereavement support and loss prevention non-profit, and she explained:

this baby may have been very young or not even born. But the family, the neighbors, the school environment if there were older children, the work environment for the parents, the faith-based affiliations, all those have a rippling effect when a baby dies.

Molly expressed this tension in that the loss of a baby “touches everybody, whether they realize it or not, and what I would love to see community mean is, is everybody having the same level of sensitivity and compassion that you see in loss parents.”

Advocates/activists highlighted that health departments and institutions should take on pregnancy loss as a public health issue and use communication efforts to spark community support and address taboo. Claudia explained how maternal health and mortality have rallied more attention in recent years, “really stillbirth is a maternal health issue as well and that, we should expand our minds a little, and, you know, get people to see how stillbirth should be, and needs to be included in the conversation.” Vivian, an activist who started a local non-profit to honor her stillborn daughter, similarly highlighted that pregnancy loss and stillbirth are sexual and reproductive health issues, which means they are appropriate to learn about in school (e.g., high school sex education and/or college human sexuality classes).

Many advocates clarified that public health campaigns need to include both prevention and empathy components to avoid placing blame on parents and framing pregnancy loss, which is unpreventable in many cases, as an avoidable experience. Within the empathy side of this communication, some participants suggested sharing specific strategies to resist taboo by giving people ways to talk to and support someone who has lost a baby. Participants also mentioned that using communication campaigns to connect people with other people in the loss community could help someone overcome the isolation they may experience.

However, those attempts to campaign and advocate may run into social regulation about what is public and what is private. Hattie said:

And so I think that’s what keeps people from sharing their story is the stigma, is the “oh, you’re sharing a lot of personal information” like “why don’t you keep that to yourself.” But it is a public health issue that we all need to be paying attention to. It’s not a private issue.

Building bereaved parents’ culture and community

The taboo and constraints in their everyday social settings often pushes people to find what advocates called a “loss community,” or network of bereaved parents who support one another and remember their babies together. Bereaved parents can connect, regardless of geography, and bond through these experiences. The pregnancy loss community tends to be grassroots and often lacks centralized or institutional support. Cindy explained this community, “they’re not professionals by any means. They’re, we’re all parents who are just, you know, trying to help you through a difficult time.” Janine, used a metaphor to describe the community as “for lack of better words, a (chuckles) very exclusive sorority that nobody wants to be a part of.” What Janine described here was present in other parents’ reflections in that people do not want to experience the loss that automatically makes someone part of this community, but that they are so thankful the loss community was there for them when their baby died. In addition to sorority, “tribe” was another word used to describe the pregnancy loss community and culture.

People in this community understand the loss, remind them that the loss was not their fault, do not judge them for how they cope, and allow parents to freely grieve and remember their babies. For instance, showing photos of their dead babies or discussing their complex emotions are normalized by others who have gone through a similar experience. Bailey explained, “you know other people may not necessarily get it. They may not get some of the dark humor. They may not get the, the feelings of jealousy and anger.” These parents have bonded through their experiences of both losing a baby and the regulatory mechanisms that attempted to control their grief. Gabriella described loss culture as an unspoken language, “You are able to speak the language of a woman that has lost a child. Only the experience will allow for you to do that.” Molly outlined a related transformation that comes from this pain, which bonds bereaved parents together:

having our losses like broke our hearts open like in a, in a horrible you know excruciatingly painful way, but also in a beautiful like really meaningful way. Like I felt like I could feel the suffering of the whole world in a way I never understood before.

While race, socioeconomic status, religion, and other identity factors will certainly influence this experience, it is a shared one that often transcends other differences. Janine explained, “That’s the thing that we have in common. So, even though I’m Black, she’s white, or she’s Latino. Okay, we come from different backgrounds. But we’re still women who have lost our babies. I guess that’s what I’m trying to say. There’s a commonality even though we’re different.”

An important realization about this community and its culture is that it did not just magically appear. Advocates and activists have used their own skills and influence to create these spaces online, in hospitals, in their local communities, and through support groups. They have built enclaves of people who can handle painful stories and not run away. Molly explained, “I didn’t think that I knew anyone this had happened to. Of course, when you start talking about it publicly, they come out of the woodworks, right? You realize people you’ve known for 30 years who had stillbirths and you had no idea.” In tandem with creating these safe spaces and connections grounded in their losses, participants refute taboo by centering their babies in their social change work.

Establishing parental identity through advocacy

Advocacy and participants’ connections to the loss community allow them to claim their identities as parents and remember their children, which pushes back on the ways in which taboo regulates their experiences and erases their babies. For instance, Claudia expressed that her advocacy work is “giving our babies a voice” and for her daughter specifically, “I had to give her short life a purpose. I couldn’t, just couldn’t let it go. And so, through all the work that I do, I feel like I’m, you know, I’m parenting her as well.” Bailey shared a similar sentiment:

And I think that’s one thing too that the support group kind of allows them to do or, you know, or the advocacy that often comes from it is that it gives them an opportunity, like a place to put that love and that parenting there. So, providing those opportunities, I think, is always good. And just ways for people to give back in whatever way they want to, you know, little acts of love and little acts of kindness.

Tessa, who started her own non-profit in the name of her child, summarized this theme of reclaiming parental identity in advocacy work:

I’m very proud of my Sophie right now for what she’s been able to do. She’s been able to connect people with people. She’s been able to help other families in their grief. And it’s like, I’m – she’s shining, and I’m a proud mom, you know.

These processes refute taboo by making the death of a baby seen, felt, and humanized and by transcending social control by advocating for something bigger – their children.