Unit 9 -- Ambiguous Loss and Disenfranchised Grief

Grief in a Family Context --HPER F460/F560

Goals for this Unit

In this unit, we address ambiguity in loss and the sense of disenfranchisement that goes with this ambiguity. You have seen already in earlier units and have become even more aware of in our class discussion, the state within which exists after a loss is inherently uncertain. In this unit, we will address aspects of losses that are even more ambiguous than the norm. The grief related to these losses is likely to be disenfranchised--ignored or minimized--and this will be explored.

Preliminaries

Think of what the two terms we will address in this unit: ambiguity and disenfranchisement. As you do, write down your own answers to the following questions, and save the answers for class discussion:

What do these terms mean to you and how do you view them in relation to loss and grief? What type of losses would you see as ambiguous? How would you recognize disenfranchised grief?
Both of these factors have been seen to contribute to a more complicated grief experience for individuals. Why do you think this is?
I'd like you to think in terms of family systems and consider how differential grief in families might contribute to a sense of ambiguity and disenfranchisement among family members.

Readings

Anthology

Boss, P. (2004). Ambiguous loss. In F. Wash & M. McGoldrick (Eds.), Living beyond loss: Death in the family (2nd ed.) (pp. 237-246), New York: Norton.

Doka, K. J. (2002). Introduction. In K. J. Doka (Ed.), Disenfranchised grief: Recognizing hidden sorrow (pp. 3-11), Lexington, MA: Lexington Books.

Werner-Lin, A., & Moro, T. (2004). Unacknowledged and stigmatized losses. In F. Wash & M. McGoldrick (Eds.), Living beyond loss: Death in the family (2nd ed.) (pp. 248-271), New York: Norton.

Also

Van Reken, R. E. (1988). Letters Never Sent. Indianapolis, IN: "Letters." (chapters 8-18, pp 49-165).

Web Resources

The following resources contain a wealth of information on losses that are often experienced as ambiguous/worthy of grief. Focus on reading the stories and poetry for this class

Hygeia: An Online Journal for Pregnancy and Neonatal Loss

MyCemetery.com - pet cemetery

"Lecture"

A theme that has recurred throughout this course is that we experience loss and grief in a social context. Even when we do so in a more solitary fashion, we learn the "ways of grief and mourning" from others, be it our families, those who have also experienced a loss, or others in our social network.

As I describe this and we discuss it in relation to ambiguous loss and disenfranchised grief, I will be using ideas from construct psychology. As you'll recall from my article (which I've asked you to re-read from last week), this perspective holds that reality is not passively experienced "as it is." Instead we actively construct meaning and we perceive this to be reality. As social animals, we use the social world around us to confirm that our reality is the reality that others sense and are experiencing. In effect, we establish an objective reality, which we see as independent of ourselves, by confirming it with other perspective takers. The importance of this social construction can not be overemphasized.

The Role of "Family" in Constructing Reality

The family plays an important role in the construction of reality. Starting in infancy, our family serves as a primary source of information on how to interpret the many stimuli we encounter in our experiential world. From this point on, family members co-exists in an interactive system, confirming and disconfirming views held by each member (Note that it is not necessary for this to be an active confirmation. We may passively observe others and then make assumptions about the meaning of their statements and behaviors.).

In this confirmatory system, behaviors are interpreted, comments are made and assessed, all within the context of each member's assumptions. In fact, even though family members may not share a reality in the sense that their thoughts match, their need to believe that they hold a shared view appears to be strong. An example of the response when this "shared view" is confronted can be found in the tremendous difficulty bereaved parents face in accepting that their spouse's grief different from their own ("We've lost the same child. Why are you behaving so differently?"). This differential grieving is the norm rather than the exception, yet is difficult for many bereaved individuals to accept, as I discuss in my paper.

I would like to point out the importance of remembering that reality construction is an ongoing process and that one's family is involved in this process. Both their involvement and the process are not restricted to a loss situation.

How Does this Relate to Ambiguous Loss and Disenfranchised Grief?

Ambiguous Loss

At the time of a loss, people are confused and overwhelmed. The loss they have experienced may overwhelm them and their expectations about life. The situation can be made more complicated if there is ambiguity about the death. Ambiguous losses are those that lack clarity and can lead to sharply different assessments of exactly who or what has been lost. There may even be some question as to whether or not a loss has occurred, or if this is a death that should generate deep emotional response. With uncertainty about how to respond, members of the social network often do nothing. They may even avoid the bereaved because they (the network members) are uncomfortable with the uncertainty, or put off by intense emotions resulting from an "insignificant" loss.

I'll provide a list of losses that often are experienced as ambiguous ones, but the list can be extended much further:

Infertility, which may not even be noticed by others, but, at least for infertile women, the monthly menstrual cycle acts as a painful reminder of this loss
Perinatal death, in particular death during pregnancy
Cases where a pregnancy has been terminated. Although most women who elect to terminate a pregnancy appear to experience relief as their primary emotion, others, especially those who terminate because of a fetal anomaly, experience grief at the death of their child.
Birth mothers who give their child up for adoption often experience recurrences of deep grief long after they have given their child up. This commonly reaches its greatest intensity on the child's birthday.
Children who were adopted describe grieving over their fantasy parent-child relationship that might have been.
Adoptive parents who describe grieving their "wished for" biological child, and may re-experience grief if their child decides to seek out her/his biological family.
Couples who are struggling with infertility often describe a sense of isolation (sometimes from each other). Their loss, if recognized, commonly is minimized by others ("Just relax. I know someone who...").
As we discussed earlier in this course, the grief of children is not interpreted accurately or accepted as real by adults.
The death of a pet, often seen by others as "just an animal". Yet, as we discussed earlier in this class, this may be a particularly significant loss for a child or an elderly person.
Losses that are so "large" that they overwhelm the imaginations of others, such as suicide or murder. Such a loss overwhelms everyone involved, but the tragedy is that this is a time when the bereaved most need their loss recognized and, at the same time, the time when their social network is most likely to avoid any and all discussion of the person who has been lost.
Alzheimer's Disease, which may create a situation in which a family member, although alive, may be seen as "dead" by some family members, because the person they know and love is seen to no longer inhabit the body of their loved one.
The death of an ex-spouse or a lover.
AIDS deaths certainly are socially ambiguous. Questions about "deserving and undeserving" victims of the disease and the legitimacy of seeing the bereaved partner of a gay victim of the disease as a "bereaved spouse" are examples of the uncertainty related to these deaths.
Phantom losses, which are losses that occurred before you were born or had the opportunity to meet the person, but have a significant effect on your life, like the death of a grandmother before your birth or the death of a father-in-law before you met your spouse.
Finally, a curious ambiguity surrounds multiple losses, particularly if they are serial losses, taking place over a period of time. The bereaved may come to be seen by others as "marked" or "cursed" (or may feel they are seen this way by others.

Other losses, not those to death, can be experienced as ambiguous ones. Included in such a list would be:

In the case of divorce, when a parent stops his/her visitation, and, essentially, abandons the family, children experience grief.
When their child gets involved with drugs or criminal activities, parents may feel they are being blamed for their child's choices. They grieve the loss of the child they had had and/or hoped for, but do not feel supported in this grief.
When an illness or condition is invisible but disabling (e.g., diabetes or the result of an injury), with each new limitation comes new grief.
One's own deterioration or the deterioration of a loved one can result in unresolved grief
Caregivers can be hidden grievers, too. What has been viewed as burnout may, in fact, be unresolved grief at ambiguous loss.
Children often experience, but even adults can experience grief at moving to a new home, in a new community, because there are so many small losses related to the loss of feeling anchored in a community.
Mental illness and having a loved one with mental illness, which may involve a cycling between periods of relatively typical functioning interspersed with periods of serious to profound recurrence of the mental illness.
It is possible to experience losses in childhood that are not reconciled and continue to recur and affect one's functioning in adulthood, as described by Ruth Van Reken in her book on her life as a missionary kid (MK).

An important factor in the resolution of grief is social support from others. The bereaved need support, not only for the reality of the loss, but for the validity of their grief, and of themselves as legitimate grievers. As Fowlkes (1991, p. 532) wrote, "Because loss entails a loss of self-validation, the starting point for recovery is the validation of the loss itself."

Ambiguous losses receive little or no public recognition, and if members of the social network are unable to recognize the loss as real, they will not be able to validate the grief of the bereaved. Others may find providing support difficult to do, since people are more comfortable with "normal" rather than what is perceived as "abnormal" losses and grief responses. Thus, an ambiguous loss may be experienced as irreconcilable. This may, in turn, lead to disenfranchised grief, which will be discussed later in this "lecture.

Boundary Ambiguity

Another way to approach ambiguity in losses is detailed in the article you read that was written by Pauline Boss. Using a family systems approach, she proposed that a "(l)ack of clarity about the loss of a family member generates confusion and conflict about who is in and who is out of the system." This uncertainty is based on a conflict in the physical and psychological presence of a family member in the system. A family member might be physically present but psychologically absent, as with Alzheimer's disease, or may be psychologically present but physically absent, as when a child is abducted.

She proposes:

The higher the boundary ambiguity in the family system, the greater the helplessness (low mastery) and the greater the likelihood of individual and family dysfunction (depression and conflict).
In the short run, family boundary ambiguity may not be dysfunctional.
If a high degree of family boundary ambiguity persists over time, the family system is at risk for becoming highly stressed and subsequently dysfunctional.
Families in varying cultural contexts differ in how they perceive their family boundaries -- even after similar events of loss or separation.

Disenfranchised Grief

Disenfranchised grief is the result of a loss for which they do not have a socially recognized right, role or capacity to grieve. These socially ambiguous losses are not or cannot be openly mourned, or socially supported. Essentially, this is grief that is restricted by "grieving rules" ascribed by the culture and society. The bereaved may not publicly grieve because, somehow, some element or elements of the loss prevent a public recognition.

Disenfranchised grief occurs in three primary ways. You may note that some of the examples also were noted under ambiguous losses:

The relationship is not socially recognized. The relationship is not based on recognizable kin ties (the death of a friend), may not be publicly recognized or socially sanctioned, (a partner in a gay or lesbian relationship), the relationship exists primarily in the past (ex-spouse)
The loss is not socially recognized or is hidden from others. Not socially recognized losses include perinatal losses. Hidden losses include abortion (politicization of loss), the loss of pet (fear of ridicule), and losses that result from causes other than death.
The griever is not socially recognized. This may include those who are not socially defined as capable of grief: very old and very young and the mentally disabled.
Circumstances of the death or deaths that contribute to stigma and negative judgement by others. Forms of death that at least appear to have an element of choice or poor decision-making would fall into this category. Suicide, abortion, death as a result of AIDS, and fatal drug overdose are all examples of this contributor to disenfranchisement.
The ways individuals grieve. Each culture provides a range of acceptable behavior after a loss, and any dramatic exceptions to these “grieving rules” will be met with anything ranging from concern or irritation through to censure.

Essentially, there is an underlying theme here of stigma or "invisibility" tied to the loss.

Because of the lack of social recognition, disenfranchised grief is a hidden grief and this "hiddenness" can paradoxically increase the reaction to loss. There can be an intensify emotional reactions. It can intensify feelings of anger, guilt and/or powerlessness, thus resulting in a more complicated grief response. Rituals may be absent or the grievers may be excluded from rituals. The reduced or absent social support promotes a sense of generalized isolation on the part of the griever.

Similarly, Hocker (1990) described this form of grief, referring to it as unsanctioned and unrecognized grief and identifying the following characteristics:

Social stigma
- embarrassment on the part of the bereaved because loss is unsanctioned
- secrecy
Absence of mourning rituals
- these provide a means to express cultural beliefs and values
- communal celebration, recognition
- funeral rituals are one of these
Grief not expressed at the proper time
- emotions are restrained, stifled and frustrated
- grief is delayed because of hostile reactions to its expression
Economic and legal problems
- financial pressures resulting from loss that is not a legal one (e.g., unmarried partner)
Emotional problems
- the disenfranchised nature of the loss can lead to emotions being exaggerated

Disenfranchised grief may lay hidden for years, only to be triggered by later losses. Seeland (1990) proposed that this hidden grief can lead to incomplete resolution of the tasks Worden outlined (and which we covered in Unit 1). There may be delayed grief reactions where new grief may build on or trigger old, unresolved grief responses. This may result in chronic grief reaction where grief is never resolved, life becomes stagnant, and new emotional growth cannot take place. Grief reactions may be masked, and grief may express itself in a variety of physical, psychological, or behavioral manifestations.

Suggested Interventions

I would like to present a quick overview of two intervention strategies.

With regard to boundary ambiguity, Boss proposed that the following therapeutic strategies be used:

Label the ambiguity as a major stressor for family members (for recognition of their situation).
Provide a setting and structure for family meetings (so they can build meaning together and reduce intrafamilial ambiguity).
Provide as much information as possible about their situation (to reduce uncertainty).
Provide families with sources and choices of support for their situation (to increase the likelihood of social confirmation of their situation).
Perhaps most important, families must be encouraged and provided a format within which they can work to find some meaning in their loss.

These strategies are intended to facilitate the completion of the three tasks of family grief, laid out for you in Unit 2.

In his discussion of unresolved and unsanctioned grief, Hocker recommended the following:

Recognize that the grief is unsanctioned and that it is, in fact, a valid loss.
Listen -- allow them to give voice to their loss.
Understand (i.e., be understanding of their loss).
Facilitate their resolution of the loss and work with them as they do this.
Take personal inventory of yourself (the interventionist), to recognize your own grief.

General Conclusions

Ambiguity and disenfranchisement often are experienced as essential components of our grief process, components that complicate the grief process for the bereaved. The ambiguity of a loss may lead to uncertainty among the members of one's social network as to how they should respond, or even if they should respond. It may even be possible that the loss will not be seen to exist. Friends and relatives may feel that the best response is no response.

At the same time, bereaved individuals need to have their loss and grief socially legitimized by others. When it is not, their grief may be hidden and its course extended. They may develop a type of chronic grief that repeats itself, possibly with greater intensity, with each new loss.

Intervention in these situations emphasize recognizing and legitimizing the loss (or losses, as in the case of multiple losses) and the grief. Building a sense of community within the family also facilitates the completion of family tasks centered on recognition, reorganization and reinvestment.

Questions for Discussion

Post your response to the following questions on the Class Discussion..

What do the terms "ambiguity" and "disenfranchised" mean to you? How do you view them in terms of loss and grief? If you had to paint a picture of each of these, what would that picture look like? Both of these factors have been seen to contribute to a more complicated grief experience. Why do you think this is?
How does differential grief of family members tie in with ambiguity? If you were to intervene in a family, how would you integrate the different responses among family members?
Keeping Ruth Van Reken's writings in mind, what are the effects of a "pile-up" of unresolved ambiguous losses? What can be done to help children deal with losses that are either invisible to or hidden from others?

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