The Intertwined Histories of Stigma and “Mental Illness”

Stigma is the unwanted shadow of a person, produced when society disdains certain human differences, retaining its ancient Greek meaning as a mark or branding on the body made with a sharp instrument. Often associated in its plural form (stigmata) with Christ’s crucifixion wounds, it has also come to connote a flawed psychological or physical state. Stigmatized people are often seen as incompetent, blamed for their suffering, and socially marginalized in ways that we might now consider “ableist.”

Experts and advocates decry stigma’s persistence. Former directors of the National Institute of Mental Health (NIMH), Steven Hyman and Thomas Insel, have repeatedly called stigma an international “public health crisis” (Insel, Collins, and Hyman 2015). Surgeons general have continually declared war on stigma. According to the US Department of Health and Human Services, stigma is “the most formidable obstacle to future progress in the area of mental illness and health” (DHHS 1999, 2001). However, such advocates and institutions rarely define stigma, identify its causes, or suggest ways to reduce it beyond improving mental health awareness, education, and treatment.

The scholarly literature on stigma—mainly in the fields of psychology and sociology—draws its inspiration from Erving Goffman’s classic work Stigma: Notes on the Management of Spoiled Identity (1963), which conceptualized stigma as interactional and performative. Written before identity politics, intersectionality, and the social model of disability were available constructs, Goffman’s ahistorical analysis focused on individuals living in contexts where stigma’s existence is presumed and must be managed. He placed the burden of management on discredited individuals who need to hide or mitigate the public exposure of their stigmatizing conditions. Almost all of us, he says, will at some point in time be devalued, if not because we have some discrediting attribute, then because we have social connections to someone who does.¹ Due to Goffman’s influence, academic works on stigma deflected attention away from historical and cross-cultural analysis, instead refining a typology of the concept and describing the negative effects of stigma and the cognitive processes involved with classification and stereotyping. Moreover, historically informed sociological analyses tend to emphasize how stigma motivates historical change, as opposed to how historical processes produce particular forms of stigma (see, e.g., Major, Dovidio, and Link 2018).

Yet history tells us that stigma—a culturally specific concept—is highly variable across time and place (Tyler and Slater 2018). It does not derive solely from ignorance or an individual’s failure to navigate the psychological machinations of the presentation of self in everyday life. As Brendan Gleeson puts it, Goffman’s “interactionist fallacy” masks the structural forces that underwrite personal encounters and their meanings (Gleeson 1999:17; Schweik 2014). From its inception, stigma has been bound up with ideas about “mental illness” in Europe and North America; I argue that their two histories can be told as one. Mental illnesses became stigmatized as this label was increasingly deployed as a modern category for the idle, particularly as capitalism developed. Doctors, politicians, and other “experts” on public health isolated people they deemed economically unproductive. Over the past three centuries, neither awareness nor medical and scientific advances have greatly affected the ebb and flow of the stigma of the many conditions classified under the rubric of mental illness, whether explained via conventional psychosocial and psychoanalytic frames or the more recent neurobiological models (see, e.g., Angermeyer and Matschinger 2005; Pescosolido et al. 2010; Reed et al. 2016). Just as ignorance is not wholly to blame for stigma, neither does scientific knowledge erase it. Stigma comes from deep structural conditions, such as capitalism, ideologies of individualism and personal responsibility, and the complicated legacies of racism and colonialism. Our dynamic conceptions of mental illness ride on the waves of broader cultural changes, and when science or medicine does ameliorate the shame of suffering, it does so as the servant of culture.

In this article I examine the dynamics of stigma through the tectonic shifts of economic and political structures and accompanying ideologies of exclusion and inclusion. I argue that stigma emerged out of the structural conditions shaping capitalism, including ideologies of individualism, personal responsibility, and the complicated legacies of colonialism. Stigma must be challenged in the context of those conditions, as the recent and successful efforts of autism activists and autistic self-advocates demonstrate. This is not to suggest that socialist states or noncapitalist communities do not stigmatize difference. The idea that a person should be valued for individual productivity was already in place in communities that later embraced other forms of governance.

Moral judgments about “mental illnesses” reflect what, at certain times and places, people consider the ideal society and person. The same holds true for physical disabilities when communities perceive them as violations of a properly ordered life (Murphy 1987:29) or as “nature’s mistakes” (Bogdan 1988:6). The most stigmatized people tend to be those who do not conform to the ideal modern worker: the autonomous, self-reliant, individual. Indeed, I argue that the burden of stigma changes along with the ideals of the modern worker. At the same time, neurodiversity, which was explicitly modeled on the social model of disability (Shakespeare 2010), has become an exemplar for how economics can play a role in destigmatizing a previously highly stigmatized condition. New accommodations and greater accessibility in work and community life have helped many who identify as neurodiverse make claims on inclusion (Silberman 2015:472–473). As some workplaces become more flexible, valued twenty-first-century workers—including those with autism—might be self-employed, work part-time, combine paid work with family care or volunteerism, interact virtually rather than in person, and continue to live with their parents after the arbitrary ages of adulthood, such as 18 or 21 years of age. As Rapp and Ginsburg (2011) have shown, the “difference of disability” reverberates over the life course, creating “new kinship imaginaries” as many families learn to accommodate atypical lives. Popular representations of contemporary autistic imaginaries suggest that young adults with autism can succeed in the workplace not despite their differences, such as restricted interests in technology and numbers, but because of them. They might enjoy repetitive administrative and technical tasks that neurotypical others eschew, such as filing, inventory management, and animal care. Such flexibility in assessing social and economic worth has made it possible for people like my daughter Isabel, who self-identifies as autistic, to celebrate forms of difference that were once disdained and hidden; they can become valued and visible parts of economic and community life to a degree that was previously impossible.

An increasing number of people with disabilities are being offered more accommodations and job support as alternative work schedules become available to a growing proportion of workers in the United States, the United Kingdom, and most G20 countries (Meager and Higgins 2011). The Organisation for Economic Co-operation and Development (OECD) predicts that “such increased flexibility will provide greater opportunities for underrepresented groups to participate in the labour market, such as women, senior workers and those with disabilities” (OECD 2017). The move from factory manufacturing toward flexible production and the democratization of communication via social media and other digital forms have opened up a degree of community integration that was formerly inaccessible for them. Despite those advantages, many scholars and policy makers consider such flexible work to be potentially exploitative of workers through “contingent work,” given that part-time employees are often denied full benefits (Barker and Christensen 1998; Belous 1998; Thomason, Burton, and Hyatt 1998). Yet, more flexible kinds of work schedules make it possible for people with physical and mental disabilities to work, resisting norms that prevent them from becoming integral parts of a community.

Research on the trajectories of autistic adults, and employment opportunities in particular, lag behind research on children and special education (Wehman et al. 2014). Nonetheless, there is a growing body of literature that suggests that people with autism, while continuing to face discrimination, are capable of succeeding in competitive inclusive employment (Wehman et al. 2013), especially if they had work experience as teenagers (Siperstein, Heyman, and Stokes 2014). Workplace changes may valorize those who would previously have been denigrated, like the person on the autism spectrum with a talent for high technology, more comfortable working and interacting with others online. Autistic adults sometimes excel in areas of significant job growth, such as engineering and other professions that rely heavily on mathematics. The Kessler Foundation’s reports on National Trends in Disability Employment (nTIDE) show increasingly positive trends for employment of people with autism,² although the number of people with cognitive disabilities employed full- or part-time in the United States has decreased over the past three decades, even after passage of the 1990 American with Disabilities Act (ADA).³ For autism, even where employment rates remain stagnant, salaries are improving (Hendricks 2010; see also Feinstein 2018).

Psychiatric disorders and developmental disabilities have become increasingly normalized over the past several decades, a stunning reversal of a shameful and stigmatized history. In 1944, for example, one of the most celebrated twentieth-century psychologists, Erik Erickson, sent his infant son Neil, born with Down syndrome, to a residential institution and told everyone, including his other children, that the baby had died at birth (Friedman 1999). In the 1960s and 1970s, children with autism were often diagnosed with childhood schizophrenia or mental retardation, and schools and employers offered few opportunities. With no evidence to back up their accusations, clinicians commonly blamed autism on supposedly unloving “refrigerator mothers” (Bettelheim 1972) and conceived of autism in the framework of psychotic disorders (Tustin 1995). In that context, few parents wanted to disclose that they had a child with autism (Grinker 2007); growing up, I knew no one with autism. But in the twenty-first century, many parents discuss their children’s cognitive, emotional, and behavioral diagnoses, medications and doses, and battles with their school systems, and might even compare them to Bill Gates, Isaac Newton, and Vincent Van Gogh, all mythologized as possibly autistic. Given this dispensation, most people I meet in my social and professional orbit today personally know several people with autism. We are witnessing what Rapp and Ginsburg describe as “the expanding arena of public intimacy around the experience of disability” (2011:395).

This more flexible sense of personhood or citizenship is apparent in almost every aspect of our existence—in the fluidity of our ethnic, gender, and racial classifications, for example—along with “new kinship imaginaries,” in which “atypicality is the norm” (Rapp and Ginsburg 2011:406). Our identities are becoming more fluid and negotiable, and this plasticity goes well beyond recognizing complex multiethnic, multiracial personhood. Many forces are contributing to these shifts. For example, globalization encourages forms of personhood consonant with borderless markets and claims for universal human rights, transcending any particular nation or government (Lewellen 2002). Other influential developments include the acceptance of transgendered identities and nonbinary sexual preferences, religious or spiritual fluidity, and new kinds of sociality that transcend the division of species, as with companion animals such as therapy dogs (Solomon 2010). In short, diverse forms of personhood are generally more accepted and considered less threatening today, despite the persistence and resurgence of bigotry, racism, anti-Semitism, and discriminatory immigration reforms throughout the world.

In this context, mental health fields are shifting from contained diagnostic categories, in which one has this disease or does not, to a dimensional view; nearly all disorders are now considered to be distributed differentially across the population. As a result, researchers, including the authors of the Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-5), have reframed major diagnoses as spectrum disorders (e.g., schizophrenia spectrum disorders, bipolar spectrum disorder, and the depressive spectrum), as happened with autism more than a decade ago. In this new model, clinicians ideally pay more attention to describing the severity of a patient’s various symptoms than to assessing whether a patient meets every criterion for a specific disorder.

The stigma of “mental illness” is modestly decreasing across many locations, although this is uneven at best. In my field sites in Africa, Asia, and North America, medicalized psychiatric conditions as well as post-traumatic stress disorder among survivors of war, natural disasters, and sexual violence are increasingly accepted as distributed throughout the entire population (Breslau 2004; Grinker and Cho 2013; Grinker et al. 2012). Regardless of these steps toward fluidity and flexibility, in some parts of the world people with cognitive disabilities are imprisoned in their own homes or in state institutions. Numerous conditions have lost stigma, but other disorders such as schizophrenia and addictions remain in stigma’s shadow. In the United States, Alcoholics Anonymous remains anonymous. The very phrase “mental health” is designed to avoid the connotations of sickness. Even the National Institute of Mental Health, the leading federal agency for research on mental illness, does not call itself an institute of mental illness, though the other national institutes are named for diseases (e.g., the National Cancer Institute).

Nonetheless, greater recognition of developmental disorders, even in low- and middle-income countries, has catalyzed early intervention programs and special education (Grinker, Yeargin-Allsopp, and Doyle 2011). Celebrities no longer hide their mental health challenges; they shine a light on them.⁴ We have not been able to put it into words, but most of us can sense that something positive is happening. One need only listen to the way millennials speak more openly about their mental suffering. A student in one of my classes described her struggle to find treatment for attention deficit/hyperactivity disorder (ADHD) when she was in high school. Her father told her she did not have ADHD and that she simply was not working hard enough to get good grades. She begged to see a psychiatrist but had to wait until she went to college to act on her own. “Getting diagnosed with ADHD,” she told our class, “was one of the best days of my freshman year because someone actually saw that I wasn’t stupid or lazy, that I just needed treatment to help me do better.” Another student even wore a T-shirt that read “I hate normal people.” In fact, the contemporary term for normal that comes from the neurodiversity movement, “neurotypical,” does not really mean normal. It refers, critically, to people who conform to society’s definition of the normal.

While such acceptance and visibility reflect a change in awareness and education, I would argue that they are epiphenomenal, masking deeper structural and historical forces.

Reframing Mental Illness: From Asylums to Consumer Activism

Capitalism did not cause psychological impairments; rather, psychological impairments acquired new meanings under capitalism. In every era, there were people who were seriously depressed, who had delusions and hallucinations, whose moods swung wildly; there were people who could not speak or, if they did, spoke mostly to themselves, who purposefully injured themselves, who were unable to take care of their daily needs (Dols 1984, 1987). But only during the first industrial revolution did the person addicted to alcohol become an alcoholic, the person who hears voices become a schizophrenic, and so on. Before psychiatry began as a discipline in the late eighteenth century, mental illness was not a category distinct from physical illness (Foucault 1998 [1965]; Hacking 2004). Mental illness—the notion of a distinct group of abnormalities of thought and behavior—is a distinctly modern invention, appearing in Europe and the African colonies in the early nineteenth century, and then in East Asia by the late nineteenth century, as the result of European influence (Gilman 1982; McCulloch 1995; Scull 1979; Swartz 1995; Yoo 2016). The unseemly history of mental illness, including the growth of horrific asylums, illustrates the vital role classification played in the simultaneous emergence of mental illness and stigma.

Most European asylums during the eighteenth and much of the nineteenth century were populated by prostitutes, criminals, drunkards, heretics, and the homeless, often undifferentiated, lumped together as one because they were considered to have one thing in common: lack of reason. Insanity or madness was just one kind of unreason. Commenting on the 1656 opening of the Hôpital Général in Paris for the poor and idle (including those later classified as insane), Foucault says of these heterogeneous residents that “there must have existed a unity which justified its urgency” (Foucault 1998 [1965]:45, 2006). Far before the invention of psychiatry, that unity consisted of people defined not in terms of their individuality but through their “unreasonable” relationship to work and to the economy in the city. As historian Andrew Scull writes, the relationship between urbanization and asylums may not have been simple, but it was certainly constitutive. Rather than attribute the growth of the psy-professions to advances in knowledge, “the main driving force behind the rise of a segregative response to madness (and other forms of deviance) can much more plausibly be asserted to the effects of a mature capitalist market economy” (Scull 2005:29). The market prompted the “abandonment of long-established techniques for coping with the poor and troublesome (including troublesome members of the more affluent classes)” (Scull 2005:29). At the same time, secularization in Europe and North America led to a new emphasis on individual agency and self-reliance. The charitable work of the Christian churches gradually waned too, as, in Marcel Mauss’s words, everyone “was now one’s own priest” with an “inner God” (Mauss 1985 [1938]).

Importantly, as Foucault showed, the asylum did not directly impose new subjectivities but provided a kind of technology that enabled the imposition of the identity of pauper—a new and shameful category of being. In the secular world of science and medicine, mental illnesses became diseases of the mind—evidence of the moral and cognitive failure to regulate oneself. The asylum was not a hospital for treating illness but a separate world of discipline in which administrators used whatever tools they needed—chains, stakes, cages, for example—to subdue and control the “unreasonable” and, to some extent, inhuman, since reason was considered the essence of humanity. The people represented as “the insane” in many European paintings before the nineteenth century (Gilman 1982, 1988) included those defined by their failure to become proper members of the working class, a definition that persisted in the United States well into the twentieth century. Even as recently as 1960, doctors framed the lobotomy, a drastic measure for discipline and control, in economic terms: as disability studies scholar Jenell Johnson notes, “the ultimate indicator of a lobotomy’s success was its ability to return patients to gainful employment” (Johnson 2011:194). Today, the World Health Organization still includes “productive” work in its definition of mental health.⁵

Historians have criticized Foucault for providing too little evidence for a “great confinement” or for its uniformity throughout Europe (see, e.g., Midelfort 1980). But the critique misses the point since the numbers are irrelevant (Porter 1990). Exclusion was just as powerful as an idea since the concept of confinement was salient. In London’s oldest asylum, Bethlem (Bedlam), there were generally only about three dozen inmates, yet Bedlam figured prominently as an imaginary in art and literature, in parents’ admonitions to their children, in threats to the disorderly (see Cross 2012; Torrey and Miller 2001:11). Even the humanitarian reform known as “moral treatment” was guided by a capitalist imperative. “Moral” for doctors such as Philippe Pinel (1745–1826) meant “psychological,” not material or physical, a kind of tough love to be exercised in the service of potential liberation and employment of the idle. Folie (madness), Pinel wrote, was alienation from the social order caused by primitive, as opposed to civilized, impulses. An expert on eighteenth-century Francophone literature notes “Folie, which until the latter half of the eighteenth century had been understood as the general incapacité … à suivre les rythmes de la vie collective [inability to follow the rhythms of social life], became through Pinel the bona fide medical condition known as aliénation mentale” (Chilcoat 1998:12). This psychological definition was a major break from the past because, in a sense, a specifically “mental” illness had been born.

The emergence of these seemingly objective concepts in Western Europe was paralleled by another development no less crucial to the stigma of mental illness, in which scientists sought to create stable categories of being and difference: the invention of the female. Just as there were no mental illnesses before the advent of psychiatry, neither were there females, since scientists believed, as they had for centuries, that men and women were part of a single sex—male—of which women were just imperfect men (Laqueur 1990). But by 1800, scientists divided men and women into incommensurable, fixed categories, a categorization that was essential for social order in an increasingly industrialized Europe.

The invention of the female was part of the same process of modern classification as was mental illness. In both France and England, scientists now saw women as defined by their bodies, as beings tied more closely to nature than men. Describing the stigma of being female in the early nineteenth century, one historian notes, “In moral discourse there was hardly any overlap between the active, rational, resolute male and the emotional, nurturing, malleable female. The two sexes were essentialized, and woman was constructed as ‘other’ in a more absolute sense than ever before” (Tosh 2005:336). This separation made it even easier for experts to fix stereotypes of femaleness, including a tendency to equate women with mental illness. It was just a short step to associating mental illness with women through the “nature” of their sex (Chilcoat 1998:13), a development that led to the creation of hysteria as a mental illness category, as well as the development of a pathological model of human sexuality.⁶

Well into the twentieth century, the association of mental illness with idleness extended to people believed to be inherently inferior, especially the members of colonized populations. During World War I, instead of using the stigmatizing term “hysteria” for officers suffering emotional or unexplained bodily distress, British physicians used the less stigmatizing term “shell shock,” whether the soldier saw combat or not. The term denoted an appropriate, understandable male response to stress, rather than anything inherent in the individual (Mosse 2000:101–102). But doctors retained the feminizing term “hysteria” to describe mental illnesses among working-class soldiers, Jews, the Irish, and colonial subjects, most of whom seldom received treatment (Bogacz 1989:230). Doctors in Germany considered non-elites untreatable because they were considered inherently inferior, weak, and “work-shy,” by virtue of their birth and upbringing (Lerner 2003). Emotional distress was proof of their nature; the diagnosis reinforced their inferior position in a gendered hierarchical system of social classification.

In the United States the stigma of the most commonly diagnosed mental illnesses (such as anxiety, affective disorders, and war trauma) waxed and waned through the first half of the twentieth century in relation to World War I, World War II, and the Korean War.⁷ Stigma tended to decrease when the military created terms like “shell shock” or “war neurosis” and used the dubious strategy of delaying psychiatric diagnosis and treatment to keep soldiers in combat. The stigma of mental illness then increased postwar when the economic costs of chronic sickness strained government budgets. Despite more than a century of concerted attempts by advocates (such as Dorothea Dix during the nineteenth century) and ex-psychiatric patients (like Clifford Beers and Rachel Grant-Smith in the early twentieth century) to resist dominant discourses on mental disability, mental health advocacy emerged in earnest only during the 1960s, along with other kinds of civil rights advocacy. By 1973 gay rights and veterans’ rights leaders, along with ex-patients and young, progressive psychiatrists, were able to persuade the American Psychiatric Association to remove homosexuality from its list of mental disorders and to begin serious consideration of a new concept of post-traumatic stress disorder (Borus 1975; Haley 1974; Kutchins and Kirk 1997; Young 2008).⁸ But with the exception of those two groups—homosexuals and veterans—the so-called mentally ill were still relatively silenced. The experts still assumed that suffering individuals could not speak for themselves about stigma and discrimination. This assumption was especially salient for individuals with physical disabilities (Epstein 2007; Funk et al. 2006).

Working within the framework of the market, patients adopted an economic language by calling themselves “consumers” or “consumer/survivors” (Tomes 2006) and appealing for the right to be heard less on the basis of their rights to health care as citizens than as consumer-citizens. Patients, condescended to and feeling disempowered by the medical professions (and by what was sometimes referred to as the medical industrial complex), aimed to resist medical paternalism by appropriating the discourse of the market. In the consumer narrative, doctors should not only heal but use their resources rationally; patients should be able to shop not only for doctors but also for providers who practice outside the medical establishment—those providers that physicians want to marginalize from the medical marketplace. Government protections for the patient increasingly came not from constitutional law but from consumer regulation protections (Tomes 2006:86–87). Patient advocacy and federal laws to protect the “mentally disabled” (e.g., the 1963 and 1965 Community Mental Health Centers Acts) together posed a serious threat to psychiatrists’ monopoly on mental health care. Patients who had once been characterized as passive (literally “patient”) and irrational, in contrast to the active, rational doctor, were now not only wise shoppers but people who could represent themselves (Halpern 2004).