Abstract
The rise in research publications over the last few decades about disenfranchised grief has deepened our understanding of this field. Importantly, it raises awareness and validates human experiences of bereavement, which are often socially ignored, muted, and stigmatized. However, while researchers in the field actively engage in the task of “enfranchisement,” as they present their work at scientific conferences, they might experience what we term disenfranchisement by association in the academic sphere. Based on our own experience, this article will demonstrate the parallel pathways between disenfranchisement of bereaved individuals and disenfranchisement of disenfranchised grief researchers, as it emerges in three main expressions of disenfranchisement: reluctance to listen, shame and guilt inflicting, and demand for euphemism. A conclusive note on how to address this kind of disenfranchisement is suggested.
There’s a grief that can’t be spoken,
There’s a pain goes on and on.
Empty chairs at empty tables . . .
— Herbert Kretzmer, Les Misérables
Mourning the loss of a loved one is an individual process, embedded in a given social, historical, and cultural context (Neimeyer et al., 2014). Ergo, bereaved individuals, as members of a social entity, are expected to grieve according to certain predetermined, narrowly defined and well-established social “grieving rules.” Such rules govern who, what, when, and how one is supposed to grieve (Doka, 1989, 2002). Within the framework of these rules, some common grief responses are considered normative and legitimized (see Laurie & Neimeyer, 2008; Raphael & Meldrum, 1994). However, when certain expressions of grief, relationship to the deceased, griever’s characteristics, or types of stigmatized or “insignificant” losses, are discordant with society’s grieving norms, the very same “normative” grief reactions are considered socially aberrant and inappropriate (Doka, 1989, 2002). Hence, such individuals are deprived of their “right” to mourn their loss, despite their personal experience of intense feelings of grief and distress.
This phenomenon was originally termed by Kenneth J. Doka (1989) as “disenfranchised grief,” which referred to “the grief that persons experience when they incur a loss that is not or cannot be openly acknowledged, publicly mourned, or socially supported” (p. 4). Therefore, the problem of disenfranchised grief is twofold: the denial of one’s “grieving rights” creates additional grief complications for the bereaved, while at the same time it removes sources of valuable support (Doka, 2008; Rando, 1993). This lack of social validation and support may cause individuals to experience additional difficulties, such as intensified grief reactions, feelings of shame and guilt, self-disenfranchisement, and an impairment in one’s basic sense of identity and belongingness (Attig, 2004, Doka, 2002, Kaufmann, 1989). Therefore, the “cure” for disenfranchised grief lies in affirming individuals’ right to grieve. According to the reviewed literature in the field, mental-health caregivers are often urged to acknowledge people’s right to grieve, support grief reactions, and encourage effective coping strategies with the loss (Attig, 2004; Neimeyer & Jordan, 2002). Nevertheless, enfranchisement can, and must, also be “granted” by policy makers by dedicating substantial financial resources that will contribute to the establishment and improvement of support programs for the various kinds of disenfranchised losses. Another way of objecting to the disenfranchisement of grief is through the academic sphere.
Disenfranchised Grief in the Academic Sphere
Over the last few decades, there has been a significant scholarly development in the field of thanatology (see Doka et al., 2016; Wittkowski et al., 2015). Accordingly, some researchers in the field have found a special interest in the domain of disenfranchised loss.
Social science research is inherently political and therefore an agent for social change (Clough & Nutbrown, 2012). An agentic stance in relation to the researched phenomenon of disenfranchised loss would be an active acknowledgment, or an active “enfranchisement,” of certain loss experiences. Such “enfranchisement” may take place in the form of published work on disenfranchised grief, and by sharing theoretical, empirical, and clinical work on disenfranchised grief in professional conferences with other scholars and attendees. For this matter, conferences and other scientific meetings are essential for the development of science (Camic et al., 2011). Specifically, live contact with fellow thinkers and other audiences of intellectuals, allows scholars to freely share and discuss new ideas, and thereby form new knowledge (Camic et al., 2011). However, in the absence of an audience, lies the absence of communication opportunities and the message of disenfranchisement. Based on our own experiences and understandings as disenfranchised grief researchers, the current article presents a specific form of disenfranchisement, which we term disenfranchisement by association. This form of disenfranchisement, when happens in the academic sphere, may have a direct impact on researchers, but much more crucially, may indirectly impact the populations they study.
Disenfranchisement by Association
In his novel book “Stigma: Notes on the management of spoiled identity,” Goffman (1963, p.30) calls the attachment of stigma to any “individual who is related through the social structure to a stigmatized individual” a “courtesy stigma” and argues that the relationship between the two parties leads wider society to treat both as sharing the same stigmatizing characteristics. “Courtesy stigma,” also known as “secondary stigmatization” or “stigma by association,” usually apply to family members of stigmatized individuals such as family members and partners of people living with HIV/AIDS (Walker, 2007), families experiencing the challenge of imprisonment (Burke, 2007; Minson, 2017) and family members of the disabled (Burke, 2007). However, stigma by association may also apply to those working with the disadvantaged, as the power of negative identities is such that associative conditions prevail and include those working in the field with disadvantaged individuals (Burke, 2007). Thus, just as family members of the disadvantaged may find themselves socially isolated and experience social disenfranchisement (Lacey & Pickard, 2015; Phillips & Gates, 2011), so may those who work with disadvantaged individuals.
Individuals who suffer disenfranchised loss are disadvantaged, as they are denied their “grieving rights,” and their voices are socially muted (Attig, 2004). Hence, we argue that as with “stigmatization by association,” those working with individuals suffering from disenfranchised grief may suffer from “disenfranchisement by association” which creates lack of social validation. Similar to disenfranchised grief, the problem of “disenfranchisement by association” is twofold: the lack of social validation to the workers themselves, and a further lack of validation for those suffering from disenfranchised grief. The two problems are connected at times when the researchers’/workers’ task is to voice the disenfranchised voices of the bereaved. In this article, we will demonstrate the parallel pathways between disenfranchisement of bereaved individuals and disenfranchisement of disenfranchised grief researchers. We will then discuss the outcomes of disenfranchisement by association, and finally, we will discuss ways to overcome disenfranchisement by association.
Parallel Pathways of Disenfranchisement
In the last few years, we have presented some of our published and unpublished work with disenfranchised populations (see Mahat-Shamir & Leichtentritt, 2015; Mahat-Shamir & Pitcho-Prelorentzos, 2019) in national and international bereavement conferences, and also in other conferences focused on relating subjects. In addition to learning about new research and exchanging ideas with other scholars, we hope to bear the message of our disenfranchised interviewees when presenting our research. Our passion lies in the commitment to understand and voice disenfranchised populations of bereaved individuals. However, while attending conferences related to the field of loss and grief, nevertheless that which were not grief conferences, we encountered reactions that reflect the experience of disenfranchisement described by our participants. At first, we did not pay much attention to these reactions. Then, we considered the incidents to be awkward or inappropriate, and sometimes even amusing. Nevertheless, we made no special connection between them. However, as time went by, we encountered similar reactions, and began wondering if they may have a deeper significance. Gradually, we began to suspect that the reoccurring pattern might be another form of disenfranchisement, this time aimed at us vocalizing the disenfranchised voices—disenfranchising us by association. In this article, we will address three of these parallel pathways by presenting examples from studies where informants described their disenfranchised grief experience and the way we, as disenfranchised grief researchers, experienced a parallel disenfranchisement by association: reluctance to listen, shame and guilt inflicting, and a demand for euphemism.
Reluctance to Listen
Birth, death, and the process of dying are essential parts of life. However, people in the western culture tend to avoid discussing their own or others’ death (Greenberg & Arndt, 2012; McLaughlin & Braun, 1998; Sleeman, 2013; Walter, 1991). Despite various policy incentives and health campaigns that promote discussions about end-of-life preferences, avoidance of this communication is still prevalent (Thompson, 2015). This avoidance stems mainly from pervasive negative attitudes and fears related to death and conversations about death (Gold, 2011; Greenberg & Arndt, 2012).
The tendency to avoid discussions about death, especially when communicating with disenfranchised bereaved individuals, is evident in research. It seems that most people are reluctant to listen to experiences of bereavement in certain circumstances. For example, in their study on the meanings reconstructed by bereaved mothers of homicide victims, Mahat-Shamir and Leichtentritt (2015) suggest that homicide survivors are a neglected population whose voice is socially muted. In a study conducted on suicide loss, one participant noted: “suicide is something that’s a social taboo … people hide from you … friends disappear … there were people who actually just couldn’t look at us” (Bell et al., 2012, p. 57). Similarly, in a study on pregnancy loss, participants also mentioned avoidant reactions. For example: “Some people are brave enough to come up to you … more people are just afraid to … ” and “Well from work, nobody called me. Nobody ever called me … I went back to work and nobody mentioned anything. Nobody said anything to me” (Mulvihill & Walsh, 2014, p. 2296).
On a parallel pathway, when attending conferences which were not grief conferences, nevertheless were related to the field of loss and grief, in most occasions, there was barely a handful of people in the audience or no audience at all, or just a small group of colleague friends who came for support. Generally, we too, felt that other researchers were reluctant to listen to our work on disenfranchised grief. For example, a few months ago, we gave a symposium themed “the stress of disenfranchised loss and grief” in a stress and trauma conference. This symposium contained four works on disenfranchised types of loss and grief, presented by two experienced researchers, and two PhD students. Three of the presentations are parts of accepted papers in peer-reviewed journals. To our surprise, in an auditorium of 80 seats, there were five people sitting in the audience; four of them were our colleague friends. The other 100 to 130 conference participants that were present at the venue chose to attend the other two parallel sessions (addressing stress issues related to war and health). The fifth person sitting in our audience, a prominent professor in the field of stress research, was genuinely interested in the presentations and provided valuable points for discussion. At the end of the discussion, the professor half-jokingly commented “now I can’t leave the room, everyone will see that you made me cry.” This comment, though said in a humorous way, inflicted feelings of guilt on us, a theme we will now address.
Shame and Guilt Inflicting
As noted earlier, when certain expressions of grief, relationship to the deceased, griever’s characteristics, or types of stigmatized or “insignificant” losses, are discordant with society’s grieving norms, “normative” grief reactions are considered socially aberrant and inappropriate (Doka, 1989, 2002). Thus, self-conscious emotions of shame and guilt evolve to promote survival within an interdependent social context by initiating submissive behavior (shame; Gilbert & McGuire, 1998) or by prompting prosocial reparatory behavior (guilt; Baumeister et al., 1994; Cunningham et al., 2018). Inherently, the lack of social validation and support may cause bereaved individuals to experience feelings of shame and guilt (Attig, 2004, Doka, 2002, Kaufmann, 1989).
Many disenfranchised bereaved individuals describe society members’ shame and guilt inflicting reactions in their narratives. For example, a mother who lost a child to drug abused was quoted in Guy’s study (2004, p. 47): The first time I went down the shops afterwards it was awful. I felt that everyone was looking at me, blaming me, talking behind my back and thinking, well what kind of mother is she. I wonder too. I should have been able to help but I made it worse, I know I did. I used to be a happy person. It has changed me in every way. I run it over in my mind all the time. I don’t go down to the local shops now. I go to the big supermarkets where nobody knows me.
On a parallel pathway, when our disenfranchised grief presentations were integrated in sessions which were not solely bereavement-oriented, we received certain shame and guilt-inflicting or diverting comments from the attendees. For instance, on one occasion, the session’s chair commented at the end of the presentation: “This is the saddest talk I’ve ever heard”. Generally, it seems that some individuals in the audience are more hesitant clapping their hands at the end of the presentation, and others just leave the room when they realize the subject matter. Although these are scientifical presentations as expected, our impression is that the topic has “ruined the atmosphere.” Needless to say, other presentations in conferences on psychologically distressing situations usually do not address “happy” topics. However, the subject of grief, especially disenfranchised types of grief, seems to result in these types of comments. Although we are well aware of the theory of disenfranchised grief, we still feel shame and guilt, or in William Shakespeare’s words that “the fault … lies not in our stars, but in ourselves” (Julius Caesar, 1.2). These feelings of shame and guilt increased after receiving “advice” on how to present our presentations in a way that will not be so saddening to the audience. We will now address this theme.
A Demand for Euphemism
The word “death” is often avoided in communication (Berry, 2008; Generous & Keeley, 2017). In its place, euphemistic expressions are favored as softer means to explain death and dying (Rawlings et al., 2017), and humor is used as a coping mechanism (Booth-Butterfield et al., 2014). Research demonstrates how society members use euphemistic expressions to soften communication around death. For example, in Lang et al.,’s (2011) study on perinatal loss and parental grief, one mother explained: I got affected … when she said: “You had an abortion.” … I kind of looked at her like: “What?” And she says: “It’s just a term.” And I got mad. That’s the only time I got mad. I said: “Change your “terms” cause it’s not an abortion … It’s not an abortion to me.” (p. 191).
Research indicates that society members not only use euphemistic expressions but also expect the bereaved to use them or to hide their grief instead. For example, in Hewson’s (2014) study on grief for animal companions and an approach to supporting their bereaved owners, the author notes that society sets expectations of how we behave, and there is no collective support or understanding for expressions of grief when an animal companion dies. One of the participants was quoted saying: “It was only a few weeks after losing my dog and … the first thing they said when I walked in the room was ‘Oh smile!’ Of course, I promptly burst into tears and ran out the room” (p. 105).
On a parallel pathway, at the same conference mentioned above, our four colleague friends who attended our symposium themed “the stress of disenfranchised loss and grief,” stayed with us in the almost empty auditorium after the symposium was over. Looking at the empty auditorium, it became clear to us that this situation reflects the disenfranchisement described by participants in our studies. As we suggested the notion that this empty room is equivalent to society’s “deaf ears” and “blind eyes” to certain kinds of grief, we were given some (well-intended) euphemistic tips as to making our Power-Point slides more cheerful with brighter colors and funny pictures, adding some humor and improving our marketing skills with others to be more politically correct (or: “if you’ll attend mine, I’ll attend yours”), so that more people will attend our disenfranchised-grief presentations. It is worth noting that when we presented our work in the same way, on other topics or to populations that were not in the field of disenfranchised grief (see Mahat-Shamir et al., 2018; Pitcho-Prelorentzos et al., 2020; Pitcho-Prelorentzos et al., 2018), we were surprised to find ourselves presenting to a “full house.”
The Outcomes of Disenfranchisement by Association
Our experiences described earlier, as well as former similar incidents, demonstrate the outcomes of disenfranchisement by association. On parallel pathways to our research participants, we felt that others were reluctant to listen, we felt shame and guilt, and we wondered about the “proper” way to present our presentations.
As a result, we questioned whether we should attend bereavement conferences only, similar to our research participants who feel that they will only be listened to by those who experienced the same disenfranchised grief. We wondered, is mothers’ traumatic grief over their murdered children not traumatic enough to be presented in a trauma-themed conference? Or, is it too traumatic or perhaps too stigmatized, to discuss the suffering of victims and covictims of criminal acts of murder? Do the psychological consequences caused by losing a military comrade, or by living with the loss of a father prior to one’s birth, not fit well under the category of stress or coping? We believe that they do, and apparently, so did the scientific committees of these conferences by accepting our abstracts. If so, as our work seemed to be well within the conferences’ scope, and its merits were sufficient to be accepted by the conferences’ scientific committees, and to be published by respectable peer-reviewed scientific journals, how is it that we found ourselves facing a room of “empty chair at empty tables”?
Similar to disenfranchised bereaved individuals who refrain from telling their stories of grief to others, or often minimize, hide or change certain details with regard to their experience of loss, we too wondered whether certain works or presentations are worthy of reading or listening to (regardless of their scientific quality or value), and the “acceptable” ways work on disenfranchised grief should be presented, so that others might be willing to listen. It appears to us that according to society’s “grieving rules,” disenfranchised grief presentations should not be overwhelmingly melancholic, gloomy, and they should avoid making listeners feel as if they are disenfranchisers or sad. Moreover, maybe they ought to present the happy and positive side of the loss, otherwise, they might sound too hopeless. Of course, we do not intend to sadden our audience in anyway, our commitment is to the scientific truth, as it is reflected through the words of our interviewees. However, as some human experiences are sad and unpleasant, especially when they are being disenfranchised, the meaning of such a commitment is that colorful Power-Point slides, cynical jokes during presentations, or emphasis on the positive side of the loss (which may very well exist sometimes, see Holland et al., 2006), will not change the essence of such experiences. In fact, complying to such suggestions will enact more of the disenfranchisement that already exist toward the researched population and will inflict a form of self-disenfranchisement by association on researchers.
The examples of disenfranchisement by association described above could have caused us to only attend bereavement conferences or to present our work in front of small exclusive groups of supportive colleague friends. It could have led us to intentionally refrain from using certain interviewees’ quotes, present only “soft” interpretations of what was described to us, or add some funny stories to lighten up the atmosphere. By doing so, we would have silenced those who agreed to speak, and we would have silenced ourselves. As disenfranchised grief researchers, we know that silencing one’s experience and rights is the root cause of disenfranchised populations’ difficulties (Attig, 2004, Doka, 2002). If we choose to silence, what justice are we doing with our interviewees? Are we failing our ethical and core professional principles? Are other disenfranchised grief researchers experiencing the same thoughts and forces described above?
As much as our own experience with disenfranchisement by association has not been pleasant, we presume that the possible consequences of disenfranchisement by association on our research population may be worse. As researchers are dependent on publications and conference presentations for academic promotion, will some choose not to investigate disenfranchised grief to ensure more promotion opportunities? Had there been more publications on disenfranchised grief if disenfranchisement by association had not existed? Will researchers, despite being interested in the field of bereavement, choose not to voice disenfranchised grieving populations in order to avoid disenfranchisement by association? Thus, may disenfranchisement by association cause further harm to those who suffer disenfranchised grief?
We should not accept yes as an answer to the above questions. We would like to conclude with our suggestions for overcoming the disenfranchisement of grief and disenfranchisement by association specifically.
Ways to Overcome Disenfranchisement by Association
The source of the disenfranchised grief we described lies in the quote at the beginning of the article, extracted from the Les Misérables play: “There’s a grief that can’t be spoken.” Not because of the absence of words, but because of the absence of those who are willing to hear. Indeed, our experience has led us to the impression that society’s “grieving rules” have, unsurprisingly, infiltrated into the academic sphere as well. Grievers are subjected to confront to society’s norms regarding who, what, when, and how one is supposed to grieve, and they experience partial or full disenfranchisement when they don’t (Doka, 1989, 2002). However, similar “rules” are applied on disenfranchised grief researchers; only that we are in a powerful, and perhaps even obligatory position, to resist the disenfranchisement.
Part of our resistance to disenfranchisement by association is presented here by putting these words on paper and sharing them with other researchers in the field, with the hope of generating a dialogue that will discuss our “rights” to present our work on disenfranchised grief, as we understand and experience it. By doing so, we hope to stay truthful to our commitment to voice disenfranchised grievers, whose voices are being partially or fully socially muted. We are determined to keep on voicing our participants’ disenfranchised voices, and we urge other researchers to do the same. In accordance, we also wish to encourage those who are “disenfranchised by association” due to researching or working with other disenfranchised, oppressed or stigmatized populations such as criminals, LGBTI individuals, immigrants, minorities, and so forth, to keep on voicing these populations’ unheard voices. Even if our words will meet an almost empty room, they will create an echo and this never-ending echo will keep on echoing until it will meet society’s ears.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
