Undone By Grief: Deviance, Medicalization, and the Political Power of Loss

Note: In 2014, in my last year of college, I had to take what was called a Senior Capstone course to complete my degree in Women's and Gender Studies. The course required us to write a final paper on a subject of our choosing. I decided to write a paper that argued against the medicalization of grief and, instead, argued for the radical potential of grief. While my paper is not perfect, I want to share it here in the hopes that it can be a resource for other people. 

My central mission with this blog is to advocate for the reconceptualization of grief. I want to normalize grief. I want our society to stop seeing grief as an emotion that needs to be tamed, medicalized, and denied. I want us to see what grief can give us, what it can show us, how it can be harnessed to create social change and generate empathy for other people. I want us to start thinking about grief not as a destructive emotion but as one that is generative, fertile, and an essential part of being human.

Introduction: The Value of Grief

What does it mean to lose another person? More importantly, what does the process of losing  do to the self? In Precarious Life: The Powers of Mourning and Violence, a text dedicated to the political possibilities of loss, Judith Butler asserts, “Let’s face it. We’re undone by each other. And if we’re not, we’re missing something” (Butler 5). This experience of being undone is frightening to most people. But I argue for the value of being undone, of losing it, of plunging into the chaos and disorder of the uncontrollable emotion caused by grief.

In “Composing Queerness and Disability: The Corporate University and Alternative Corporealities,” Robert McRuer argues that the modern ways in which we teach writing composition are connected to larger narratives about heternormativity and able bodies. For the purposes of this paper, I want to linger on McRuer's embracing of a messy, decomposed subject. McRuer writes that “the bourgeois culture of the past few centuries has only become more obsessed with the composed, self-possessed, 'normal' subject, properly located in a hierarchical social order” (McRuer 153). McRuer argues for “resisting closure or containment and accessing other possibilities” (159). In addition, he calls for “the desirability of a loss of composure” (149).

What could  cause more disorder and “loss of composure” than grief? Chaos reigns, we are out of control, adrift, lost to ourselves.  A prolonged grieving that is messy,  disruptive, and excessive-- one in which the griever loses all composure—is  increasingly medicalized in Western society. These grievers are constructed as deviant, pathological, and in need of medical intervention. For how can we tolerate the break down of the self in a world intolerant of disorder and disintegration?

We fear being undone, we fear the chaos of the uncontrollable; therefore, grief is a danger, a threat to our norms and defenses against personal and cultural anarchy. It is no accident that we associate healing with motion.  Society tells us to move on, let go, find closure, get over it. Get over what? Move on from what?  As though loss were separate from ourselves, as though we could extricate our bodies from the bodies of our dead beloveds. The truth is we share a skin; and the death of one of us is the death of both of us. It is the death of the “we,” the unit, the connection between two human beings. We fear this death and what it will do to us but what if fear could be transmuted into power? In Regeneration, Pat Barker writes of the disintegration involved in metamorphosis: “Cut a chrysalis open, and you will find a rotting caterpillar. What you will never find is that mythical creature, half caterpillar, half butterfly[...] No, the process of transformation consists almost entirely of decay” (Barker). It is the process of decay, the break down of the self, that leads to new potentialities.

We need not fear the disintegration, the loss of composure, that often accompanies grief.  We can reconceptualize it rather than medicalize it. What can grief give us? What value can it bring? What can the grief-stricken teach, share, and accomplish? What kind of society can we build when we engage in an ethics of loss and grief? An ethics that acknowledges the devastating magnitude of every single death? That does not see loss as something to move on from or forget but to remember, to harness, to embrace as that which makes us vulnerable, sensitive, and profoundly human?

A Personal Perspective 

I am writing this paper out of a personal obsession with the subject of grief. When I was sixteen years old, my father unexpectedly died.  For eight years now, I have struggled with an overwhelming grief that perpetually consumes me. I am undone. I am shattered. And yet I live in a society that refuses to acknowledge such messiness. One week after my father's funeral, I was forced to complete high school exams. Institutions make no exceptions for the grief-stricken. One of my teachers advised me to “keep busy” as a way to deal with my devastating loss. Other well-meaning people said time would heal, that everything would be okay, that he was, after all, in a better place. I attended a group therapy session at my high school in which other teenagers who had also lost parents spoke about their grief. In one activity, the counselor asked us if we agreed with the statement that everything happens for a reason. Everyone agreed except me. I realized that my grief was different from the others, that I was not coping in a socially-acceptable way because I was furious and broken and emotionally overwhelmed,  but I had no way to express any of these feelings. I refused to put my loss in a positive light. I refused to make peace with it or move on from it. Over time, I have found the value in my grief. I see it as the one thing that connects me with every other human being because loss is one of the few universal experiences. All of us, at some point, will lose someone we love and we will know the feeling of grief. This paper explores how certain forms of grief are medicalized and seen as deviant. I examine the harm such medicalization does to people. Finally, I argue for different ways of seeing grief that show its complexity and possibility.

The Construction of Normalcy

Where did the grief norms I encountered actually come from? First, it's important to examine the emergence of normalcy as a concept in Western society. In “Constructing Normalcy: The Bell Curve, the Novel, and the Invention of the Disabled Body in the Nineteenth Century,” Lennard Davis examines the origins of normalcy, which is actually a recent idea that only just emerged in the 19th century.  Norms are not a natural occurrence. Davis writes that "the idea of a norm is less a condition of human nature than it is a feature of a certain kind of society" (Davis 3). Normalcy, then, is socially constructed. Before the norm, there was the ideal, which dated back to the 17th century. With the ideal, it is understood that people cannot possibly embody or attain it. The ideal was found in art and sculpture from classical antiquity.  Davis explains the differentiation between the norm and the ideal this way: “the concept of a norm, unlike that of an ideal, implies that the majority of the population must or should somehow be part of the norm” (Davis 6). The ideal was a vision of perfection that could not exist in real life; the norm became a measuring stick by which all people were measured. Most importantly, the construction of normalcy means that those who do not conform to certain standards are defined as deviant. As Davis notes, “with the concept of the norm comes the concept of deviations or extremes” (Davis 6). Normalcy becomes an instrument of deciding who is acceptable in society and who is not.

The Emergence of Deviance and Medicalization

Norms lead to deviance, and deviance leads to medicalization. In The Medicalization of Society: On the Transformation of Human Conditions into Treatable Disorders, Peter Conrad writes that “medicalization occurs primarily with deviance[...]the medicalization of deviance includes alcoholism, mental disorders, opiate addictions, eating disorders, sexual and gender difference, sexual dysfunction, learning disabilities, and child and sexual abuse” (Conrad 6). In this paper, I argue that grief is an example of the medicalization of deviance. According to Conrad, medicalization “describes a process by which nonmedical problems become defined and treated as medical problems, usually in terms of illness and disorders” (Conrad 4). Grief is not a medical condition; it is a natural reaction to the loss of another person.  But once certain reactions become seen as normal, other reactions are considered deviant and come under the surveillance of the medical establishment.  Medicalization has serious social consequences. Most importantly, “Numerous studies have emphasized how medicalization has transformed the normal into the pathological and how medical ideologies, interventions, and therapies have reset and controlled the borders of acceptable behavior, bodies, and states of being” (Conrad 13). Medicalization pathologizes difference.  Indeed, Conrad argues that the danger of medicalization is that “transforming all difference into pathology diminishes our tolerance for and appreciation of the diversity of human life” (Conrad 148).  The medicalization of grief has enshrined a narrow spectrum of acceptable reactions to loss. In the process, we deny the diverse forms of grief that people express.

Debunking The Five Stages of Grief 

Difference and diversity are unavoidable aspects of grief. Not every person will react the same way to a loss. Responses run the gamut and vary through space, time, and culture. And yet certain norms for grieving have arisen in Western society, and any deviations from those norms are automatic grounds for medicalization. A strict process of grieving did not exist until four decades ago, with the publication, in 1969, of Elizabeth Kubler-Ross's highly influential On Death and Dying: What the Dying Have To Teach Doctors, Nurses, Clergy, and Their Own Families. Clearly, from the subtitle alone, the purpose of the book was to explore the ways in which dying people confronted death. To that end, Kubler-Ross identified five stages that many moribund patients experience: denial, anger, bargaining, depression, and acceptance.

Soon, though, people applied these five stages to the grief experienced by those left behind despite the fact that this was not Kubler-Ross's intention. As Ruth Davis Konigsberg writes in The Truth About Grief: The Myth of Its Five Stages and The New Science of Loss, “It was other practitioners, having found the stages so irresistibly prescriptive, who began applying them to grief in the 1970s, a repurposing that Kubler-Ross did not object to” (Konigsberg 8). This led to the idea of grief as “a 'process,' or a 'journey' to be completed, as well as an opportunity for growth” (Konigsberg 5).  Furthermore, the five stages of grief have become so entrenched in popular culture that most people believe that grief follows such a narrow trajectory and that the five stages are scientifically proven when, in fact, they are not. Because of Kubler-Ross's book, the five stages were transformed into a norm that determined which grievers were acceptable and which ones were deviant. The five stages became a way to create order out of the chaos of grief. In the process, they set the parameters for how grief should be experienced and treated. More than anything, the stages imply that grief lasts only a finite period of time when, for many people, grief often lasts for the rest of their lives.

The Medicalization of Grief: Normal Grief and Complicated Grief

With the publication and acceptance of Kubler-Ross's text, the medicalization soon followed, as “a new belief system rooted in the principles of psychotherapy rose up to help organize the experience [of grief]. As this system grew more firmly established, it also became more orthodox, allowing for less variation in how to approach the pain and sorrow of loss” (Konigsberg 5). Grief counselors and psychoanalysts effectively ushered in the medicalization of grief, perpetuating the idea that, in order to deal with grief and move on with life, one needed to seek out professional medical help. Grief came under the provenance of the medical establishment, which enforced particular norms and criteria that distinguished between acceptable and deviant forms of grief.

In the psychiatric field, grief is divided into two categories: normal grief and complicated grief. According to the “Diagnostic Criteria for Complicated Grief Disorder” published by The American Journal of Psychiatry in 1997, the seven symptoms of complicated grief are: intrusive thoughts about the dead, intense emotions, yearnings for the deceased, feelings of loneliness and emptiness, staying away from things that remind one of the dead, difficulty sleeping, and loss of interest in life, work, and relationships. By defining a particular way of grieving as complicated, and thus pathological, certain responses are medicalized. While many grieving people experience most, if not all, of the symptoms listed, only people who have them for an extended period of time are viewed as deviant.

Objections To Complicated Grief 

Some scholars have serious issues with the creation of complicated grief disorder and question the reasons for, and consequences of, such a diagnosis. In “What Is Complicated Grief? A Social Constructionist Perspective,” Tony Walter argues that complicated grief, as a psychiatric condition, serves various functions, from taming chaotic emotions to controlling deviance. Walter writes that “the notion of 'complicated grief' is a way of re-inserting cognitive order into the disorder, making sense of what experientially is chaotic” (Walter 72). Walter continues, “complicated grief is dis-ordered grief, and modernity has difficulty with dis-order. The notion of “complicated grief” attempts to find reason in the dis-order, and thus to begin re-ordering” (Walter 77).  Complicated grief is also another way in which deviance is identified and treated, “Every society has its norms, and identifies and labels deviance from those norms. Grief is no exception. Every society has norms about the proper and acceptable way to grieve” (Walter 74). Walter goes on to argue that those who harness their grief for political action and resist grief norms are seen as dangerous to the state, “the anger of grief has on numerous occasions throughout history been used to transform society. A fairly recent example is the Mothers of the Plaza de Mayo, the mothers of Argentina’s disappeared, who refused to be bought off with (probably fake) bones being returned to them and with talk of the need for 'closure'” (Walter 76). The Mothers of the Plaza de Mayo underscore the radical potential of grief, which I will discuss in more detail later on. Walter notes that “Almost certainly the Mothers of the Plaza de Mayo fitted the criteria for complicated grief” and asks “Should we be worried about them? Should professionals intervene and get them more balanced?” (Walter 76).  When grief is medicalized and turned into a problem in need of a diagnosis and treatment, what is lost? How does complicated grief simply reinforce already existing power structures by delegitimizing and problematizing people's responses to loss?

In Closure: The Rush To End Grief and What It Costs Us, Nancy Berns also objects to the medicalization of grief, arguing that it prevents the creation of community and isolates the person who is grieving. Berns writes that “It is true that grief is often complicated. It is also the case that complicated grief is most often normal. Medicalizing grief and labeling people as having a disorder further privatizes the grieving process” (Berns 52). Both Walter and Burns raise important questions about the ways in which grief is pathologized and what is lost through the process of medicalization, such as community and social change.

 A Sociological Approach To Grief

If viewing grief through a medical lens is damaging, how else should we view it? What are other possibilities? In “Grief as a Social Emotion: Theoretical Perspectives,” Nina R. Jakoby theorizes grief as an emotion embedded in, and shaped by, social relations. Jakoby applies a sociological frame that emphasizes a social model of grief as opposed to a medical model. Jakoby writes that “The sociological model of grief focuses on grief as an emotion in its non-pathological form. Grief is seen as a normal emotional response to the loss of a significant other” (Jakoby 680).  Jakoby shows how grief can be re-evaluated by filtering it through three “sociological theories of emotion” (Jakoby 685). The three theories are: symbolic interactionism,  structural theory, and behavioral theory. My paper will discuss symbolic interactionism and structural theory because they are most relevant when it comes to situating grief within a sociological framework. Each one brings new perspectives to the study of grief and challenges the medical model of grief.

Of the three theories, symbolic interactionism most directly addresses grief. This theory emphasizes the social bonds and how the death of another person is not just a physical loss but an emotional and social loss. As Jakoby claims, “When the 'other' dies, the social nature of the self becomes painfully obvious and makes grief a social phenomenon. It is not only the loss of the loved one but also the loss of self that was constructed through interactions with the deceased” (Jakoby 686). Jakoby goes on to point out that “From this perspective, grief is defined as a painful reconstruction or rebuilding of the self and everyday life” (Jakoby 686). Symbolic interactionism recognizes the seismic effect of loss and acknowledges that rather than “complicated” grief originating within the individual, intense expressions of grief are the product of our social connections with other people and the devastation that death leaves behind. This counters medical models of grief that pathologize grievers.

Symbolic interactionism is also attentive to the ways in which grief is regulated by society and family. Jakoby writes that, within symbolic interactionism, grief is defined as an “emotional role” and is thus subject to “feeling rules”. Feeling rules “are scripts for emotions in a given society and culture. They are social norms and specify the emotions that individuals should feel or express in a given situation” (Jakoby 691).  Within psychiatry and the medical model, feeling rules are used to determine what is normal grief and what is pathological grief. People who deviate from these established feeling rules are pathologized: “The concept of normal grief is an ideal that tells us how to grieve. It is a specific Western cultural model of grief that does not correspond to reality and everyday experiences of loss. It is a social and cultural construction maintained by science, especially psychiatrics and health professionals” (Jakoby 692).

However, not only the medical establishment enforces feeling rules on individuals. Often, grief is regulated by the family. According to Jakoby, “It is important to pay attention to family norms about the right way of grieving and pressure by family members about how to feel and behave” (Jakoby 693).  Symbolic interactionsim is a useful sociological theory for examining the ways in which grief is regulated and pathologized, revealing the feeling rules that operate within our lives, and how certain norms are reinforced both by the medical establishment and the family unit.

Structural theory is also useful in examining grief. Like symbolic interactionism, it resists medicalization, focusing, instead, on systemic inequalities that can exacerbate grief, affect how one expresses grief, and who has access to coping strategies. Structural theorists “cannot separate the experience of grief from the structural conditions surrounding the life of the survivors” (Jakoby 695). While the medical model identifies grief as a mental illness that needs treatment and originates within the individual who is grieving, structural theory illuminates how the unequal distribution of resources and entrenched class differences lead to differing ways of grieving. Jakoby writes that “there is empirical support for a link between personal and social coping resources, coping styles and social class. Personal resources determine individual resilience or vulnerability in the face of bereavement” (Jakoby 698). Furthermore, “Studies provide evidence that low socioeconomic status leads to experiencing negative emotions, such as anger, sadness, anxiety, or feelings of powerlessness” (Jakoby 698). Class often determines how people express grief and who can access bereavement resources: “unequal distribution of bereavement technologies, such as counseling […] provide middle classes with a set of feeling rules to negotiate their way through the experience of grief whereas working class people do not tend to use these technologies” (Jakoby 699). Working class individuals tend to deal with grief in a more stoical manner and this can mean a greater regulation of the expression of grief within families and communities.

As a member of the working class, I can look back and see the ways in which my own grief was regulated through social interactions. For the poor, attending counseling or seeking out medical help with grief is not an option; therefore, grief must be dealt with internally. Grief must follow a certain time line and then come to an end.  When you are struggling to pay bills and survive, you cannot stop to grieve too long. You have to return to work, take care of your family, and function in the world.

Because they are subject to different feeling rules, the upper class and the working class cope with grief in different ways. I want to suggest that this regulation of grief leads to something very interesting. While the upper classes seek out medical treatments for their grief, in the form of psychiatrists, group therapy, and counseling, the working class channels its grief in other ways, often into political action. This underscores two things: how the medicalization of grief can foreclose the radical potentialities of loss and how grief can create community and lead to mass movements.

 The Politicization of Grief 

In Precarious Life: The Powers of Mourning and Violence, Judith Butler theorizes grief and mourning as the building blocks for constructing a new kind of political consciousness based on a shared sense of vulnerability to death, loss, and suffering. For Butler, grief is a kind of awakening to oneself as mortal, socially connected, and ethically obligated to the people around us. Butler writes that "Many people think that grief is privatizing, that it returns us to a solitary situation and is, in that sense, depoliticizing. But I think it furnishes a sense of political community of a complex order” (Butler 22). When we move grief outside the walls of the psychiatrist's office and allow it to live as it is, in all its pain, messiness, and chaos, we discover that we are, in fact, not alone. Other people are burying their loved ones. Our grief is not something to be ashamed of, nor is it the product of a deviant mind, it is an expression of our common humanity. Butler goes on to observe that  “passion and grief and rage, all of which tear us from ourselves, bind us to others, transport us, undo us, implicate us in lives that are not our own, irreversibly, if not fatally" (Butler 25). Through a devastating loss, perhaps we find a part of ourselves that is missing until that violent rupture. What was missing was a true understanding of the depths of love. We are undone, we are shattered, precisely because we loved another person so much. What can we do with that love? How can we carry it on when we cannot give it to the person it was once bestowed on? Perhaps we harness it. Perhaps grief is what love becomes in the aftermath of death.

 The Mothers of the Plaza de Mayo

I can think of no story that better exemplifies Butler's theories on grief and mourning than the Mothers of the Plaza de Mayo, mentioned earlier by Tony Walter. The Mothers found one another through the shared experience of unimaginable loss. When the military junta took control of Argentina in 1976, a reign of violence began that lasted until the early 1980s. During the years that the junta controlled the country, thousands of protestors, intellectuals, and ordinary citizens vanished. They are known as  desaparecido, the disappeared. The Mothers of the disappeared went to police stations to inquire about their children but were denied any answers. Over time, the women started gathering together in the Plaza de Mayo to protest the military regime and demand knowledge of what happened to their sons and daughters. In “Grief Transformed: The Mothers of the Plaza de Mayo,” Sally Webb Thornton writes that “By keeping the memory of their pain in the forefront, and by not coming to closure, these Mothers seem to have resolved their grief in an unusual way through their mission to seek justice, and not to allow their children’s lives and work to perish” (Thornton 286). Grief connected the women to one another and grief spurred them to social action. Furthermore, because these women were marginalized, working class, and possessed very little individual power within Argentine society, they were forced to cope with their grief outside the medical establishment. A counseling session would have done very little for the Mothers. They needed to know what happened to their children and the mixture of grief, outrage, and fury they felt propelled them on a quest for justice.

The Mothers of the Plaza de Mayo show the value of grief and its radical potentialities. The Mothers continue to stage protests in Argentina. Their movement has not ended. Their commitment to justice is unwavering because they allowed their grief and loss to politicize them. Was their grief complicated? Absolutely. They thought of their dead children. They refused to let them go. They were obsessed with knowing what happened to them. It is true that every instance of loss is not as unresolved as the example of the Mothers. Most people know how and when their loved ones died. They do not have to fight a government to learn that information. Still, there are many ways in which grief is political, from the deaths that happen because of war to those that are the products of social inequality.

Amadou Diallo

The photographs by Paul Fusco are haunting: hundreds of women on the streets of New York City, their heads shrouded by black veils to honor the life of Amadou Diallo, an innocent, unarmed man who was killed in 1999 by police officers after they discharged 41 bullets, 19 of which hit his body. The officers were later acquitted of all charges. The trial and the verdict sent people into the streets where the women wore black veils as a sign of mourning and held pictures of Diallo. These mass protests are yet another example of the power of grief to ignite social action and create community. The women could have foregone the mourning veils, but it was essential for them to convey not only their anger and political outrage but their profound grief. Diallo's death was not the first, nor would it be the last time, a person of color would be murdered by police officers. Like The Mothers of the Plaza de Mayo, the Diallo mourners used their grief to create alliances and stand up against the systemic violence perpetrated against people of color in New York City and throughout the United States. Diallo was a Muslim immigrant from Guinea and his death further underscores the ways in which the working class take grief to the streets and use it to spur mass protests. They refuse to let their grief remain private and individualized.  Instead, they engage in public mourning that calls attention to the systemic injustices suffered by the poor and marginalized.

Conclusion: Undone by Grief

For some people, grief is a finite process with a beginning, middle, and end. These people are able to accept death as a difficult but natural part of life. They do not get mired in it and, though they feel the pain of loss, they go on to lead happy and productive lives. For some of us, grief is forever.  It follows no process, it has no terminus. It is messy and consuming and we struggle to contain it.  This might seem like a terrible thing—to never let go of grief, to always be haunted by the dead—and while it is difficult, the revelation that my grief is ongoing actually liberates me. Instead of denying my grief or suppressing it or internalizing shame because I cannot conform to the five stages of grief or find closure and healing, I embrace grief as a part of myself. Now, I write about grief on a blog and receive messages from people who say that I have helped them, that they appreciate what I share. This is but one small example of how grief can connect us.

I want to be clear about what I am and am not saying in this paper. I am not against grief counseling. I do not seek to shame anyone who goes to a psychiatrist and desires help in coping with grief.  I am questioning the overall medicalization and social regulation of grief. I am critiquing the norms we enforce on grievers and the narratives we tell to them, namely that they should get over their loss, move on, find closure, let go, and heal. I am also arguing for the rights and value of people whose grief is messy, disordered, and chaotic; people who, according to psychiatry, have “complicated” or pathological grief. I am arguing that instead of judging those of us whose grief is messy and prescribing us medication and trying to make us “normal” and composed, that we allow them to exist and that we acknowledge the diversity of grief.

This paper has traced the emergence of normalcy, deviance, and medicalization as it connects to grief. I have shown the ways in which grief is pathologized in American society, the damage this does to the grief-stricken, and the problems of medicalizing grief. I have argued for a reconceptualization of grief as that which connects, sensitizes, and politically motivates us. From the Mothers of the Plaza de Mayo to the Diallo protestors, grief continues to be a catalyst for mass movements dedicated to the abolition of oppression and violence. Embracing the disorder and messiness of grief can lead to new possibilities for individuals and society. Grief can be empowering even as it destabilizes our lives. Through grief, we can come undone, lose ourselves, but, in the process, we find other things. We find community, compassion, and the understanding that all of us will one day lose what we love most.

Works Cited

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Konigsberg, Ruth Davis. The Truth about Grief: The Myth of Its Five Stages and the New Science of Loss. New York: Simon & Schuster, 2011. Print.

Kubler-Ross, Elizabeth. On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy and Their Own Families. N.p.: Routledge, 2008. Print.

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"Portfolio - NEW YORK, USA. 1999 - 2000. Diallo Protest/ Women in Mourning.Paul Fusco." Magnum Photos. N.p., n.d. Web. 29 Apr. 2014.

Thornton, Sally Webb. "Grief Transformed: The Mothers of the Plaza De Mayo." OMEGA: The Journal of Death and Dying 41.4 (2000): 279-89. Print.

Walter, Tony. "What Is Complicated Grief? A Social Constructionist Perspective." OMEGA: The Journal of Death and Dying 52.1 (2006): 71-79. Print.