Annemarie Goldstein Jutel's Putting a Name to It: Diagnosis in Contemporary Society traces the sociological roots and effects of diagnosis. Recounting the history of diagnosis, this volume explains the power of its cultural contexts and argues for the necessity of a separate field of study: the sociology of diagnosis (originally proposed by Phil Brown in the 1990s). Jutel's research on diagnosis, and the potential of the field, should be of great interest to the disability studies community. As Jutel writes in her introduction, "Diagnosis provides a cultural expression of what a given society is prepared to accept as normal and what it feels should be treated" (3). Jutel cites witchcraft and the "tendency of slaves to run away" as formerly classified "diseases" at which we might now scoff, though we may not realize that our contemporary concern with such things as female sexual dysfunction or obesity are just as much the result of cultural norms (3).
Jutel argues that "Diagnosis is always a social creation. That doesn't mean that the diseases it labels aren't 'real,' but it does mean that before a diagnosis can exist, it has to be visible, problematic, and perceived to be related to the field of medicine" (3). One of her examples is the American "obesity epidemic." There are many forces at work in the labeling of "overweight as a disease," including our culture's normative body weight and shape (60). Regardless of research that disproves beliefs in the benefits of thinness and the dangers of heavier bodies, the thin body is still revered. Jutel asks why, in the face of so much research that dispels the myth, is thinness favored and "corpulence" demonized? "Campos et al. (2006) posit that this [labeling of obesity as an epidemic] is a moral panic rather than a health crisis. Moral panics are 'typical during times of rapid social change and involve an exaggeration or fabrication of risks, the use of disaster analogies, and the projection of social anxieties onto a stigmatized group or an episode'"(60). Thus, our labeling of overweight as not just obesity but also an epidemic may be the result of fear in the face of our quickly changing culture. Then, we might ask, in what other ways are we enacting this fear and mislabeling disease? She goes on to say that "Deviance, in all cases, is attributed rather than inherent….Being corpulent in isolation is not deviant, and indeed is, or has been, normative in some settings and eras" (60). Thus, in Western culture, we perpetuate the normative body—thin and fit—and when coupled with cultural instability, there results this moral panic that defines overweight as an obesity epidemic.
Female Hypoactive Sexual Desire Disorder is a second example that Jutel explores in depth to illustrate culture's effects on diagnosis, providing, as she says, a "bouquet of examples" that reveal our culture's "fascination" with gender and libido (102). While there was previously a concern with "excessive female desire," in the last several decades, interest has shifted to address low sex drive and its diagnosis, which "relies on the untested assumption that all humans are endowed with demonstrable sexual urges and that their absences constitutes a pathological condition" (104). Jutel cites the online Asexual Visibility and Education Network as one community that sees lack of sexual desire as "aproblematic and naturalized," and explains that online communities are often a source of support and acceptance for individuals who face stigma in the culture at large. Jutel goes on to acknowledge the work of queer and feminist theorists, who have posited that "gender and sexuality are cast as products of social and historical context rather than of immutable biological states" (106). While in the case of the asexual network, it's rejection of diagnosis that creates community, in other cases, various diagnoses may establish "collective identities" that can empower patients (11). Then, Jutel suggests, such collective identities may play a role in reshaping social norms and structures of power.
Jutel also explores the role of technologies in diagnosing and treating disease. For example, sickle cell anemia and various forms of cancer can be identified only through new technologies. However, she warns that we must beware not to rely so heavily on technology that we miss the most obvious symptoms or cures, arguing, "The appeal of transparent, objective, and irrefutable information about the body—detached from both patient and doctor—intervenes to a fault in the diagnostic process" (124). Jutel's example here is a personal one: she recounts five months of testing for a cough that was finally resolved with a simple anti-inflammatory treatment of the symptom (124-5). Jutel further points out that technologies may offer the complicated opportunities of "surveillance medicine," which tests the healthy body for potential problems and genetic testing. For those for whom there is presently no cure, there is the hope for future technological innovations that might offer relief (133).
The online community is just one technological example of many that have been significant to the history of diagnosis (or lack thereof). Jutel cites Brown's model of "disease discovery," explaining:
His model identifies distinct factors that are typically part of the disease discovery process but are not present in all disease discovery and are not sequential. They do, in any case, demonstrate how consensus, politics, and interest must converge before a diagnostic category can exist. There are four elements in Brown's model: lay discovery, social movement, professional factors, and institutional organizational factors. (88)
The process involves many factions that include both lay people and doctors, undergirded by power dynamics and social contexts. For example, in seeking a diagnosis, an individual must recount his illness narrative to the doctor. Jutel states, "While not all illnesses can be diagnosed, their narratives are the starting point for diagnosis. Note that there is more than one narrative: the patient's and the doctor's stories juxtapose and merge for a diagnosis to materialize" (65). In analyzing this process, we must be aware of Foucault's observations that medicine is an institutional power that "presumes the absence of lived experience" (65). Jutel's reach into a wide range of disciplines—literature, medicine, queer studies, sociology—is in part what makes this book such a compelling read.
Changes in technology allow for more power on the patient's part, as we can now go online and self-diagnose—a possibility that brings along with it its own benefits and problems. This process may also give rise to such issues as contestable diagnoses (such as Chronic Fatigue Syndrome), the "wastebasket diagnosis" of a psychiatric disorder reached only as a default, and the acronym "MUS," or "medically unexplained symptom," which "reifies the notion that all physical complaints without explanation can be viewed in the same way" (71, 83). Some diseases that were previously considered psychogenic are today recognized in the ICD, International Classification of Disease. Contested diagnoses create tension and stress for doctors and patients because patients often feel invalidated by lack of diagnosis or the conclusion that the problem is psychogenic. Furthermore, undiagnosed patients are "not entitled to compensation for treatment or for the changes the illnesses impose on their lifestyles" (77). Fibromyalgia is discussed in detail here. Throughout the book, Jutel also acknowledges the pharmaceutical industry as another force that drives diagnosis, and in some cases, self-diagnosis.
The issues explored in Putting a Name to It, and the questions it raises, are of tremendous importance today, especially for those seeking diagnosis as a means for resources, or rejecting diagnosis' judgments of normativity. In whose hands do these decisions rest? How can we—individuals, scholars, doctors—take part in this discussion and effect change? As Jutel's call for a field of study is taken up, readers are given the chance to more thoroughly consider cultures' definitions of normal or deviant, healthy or sick, and the effects that those biases can have on diagnosis. How will the normative body—and, as Jutel addresses later, the mind—be defined, and how will that impact classification of individuals and groups in medicine, and our sense of ourselves as we fall under, defy, or seek out diagnosis? Just a few months ago, the votes on the DSM-V were cast, relegating some diseases (like Asperger's) under the umbrella of more general diagnoses (Autism), while giving others (Hoarding) their own classification. These new classifications will have a tremendous impact on funding for research and allocation of resources to individuals. Jutel's book—and the development of the field—can help us find a language and context to discuss critical and emerging issues like these.