Reviews

A brilliant insight that emerges again and again from the book, though never articulated as such, is that it is hard to imagine stigma without a constellation of beliefs that are distinctly Western and Judeo-Christian. If, for example, we insist on the fiction of a free will, on the separation of mind from body, on the existence of an autonomous self to which we ascribe agency and responsibility, it is impossible to develop a view of the world that does not stigmatize. The person who believes that all mental illness is purely psychological will blame herself for being weak and unable to pull herself together; the person who believes that her illness is biological might worry that she is cursed for life and that she might pass it on to her children. This last argument has been the justification for all past attempts at eugenics. But which view of mental illness is less stigmatizing?

Yet it is possible to look at things differently. It is possible to look at mental illness without the needless divisions of mind and body, psychology and biology, nature and culture. Consider, for example, the Jun/oansi people of Namibia, with whose culture Grinker seems intimately familiar. To them, the symptoms of psychosis are neither a disease of the body nor a fault of the mind. They are caused neither by genetics nor by negative or maladaptive thoughts. Rather, in attributing the symptoms of psychosis to spirits outside the body, the Jun/oansi seem to do away with all stigmatizing notions of personal responsibility. Such a view, which itself must reduce the burden of suffering, is also not in conflict with the use of medication to treat the symptoms. Indeed, the Jun/oansi do not consider medication a threat to their personal identities, as it is so often seen in the West. It is not a threat to their agency or their humanity. Instead, they seem to understand that it is much more important and pragmatic to treat the symptoms by whatever means possible. For, in mitigating the symptoms of mental illness, we also work to mitigate the stigma against it. They seem to understand that what matters most in the end is whether the patient is relieved of his suffering.

This is, of course, the more fundamental question: How do we grapple with the problem of human suffering — suffering that takes place in the mind and whose vocabulary is always cultural? Instead of philosophers and theologians, we now look to psychologists and psychiatrists to provide us with the keys to happiness or, if not that, at least relieve us of our pain. If suffering is human, and universal, the stories we tell of our suffering are anything but: They have always been personal and local, and contingent on culture.
What becomes clear, in reading Grinker’s book, is that at several points in our recent history, our stories, far from making sense of suffering or easing it, have served to dehumanize people and deprive them of their dignity. This is the signature of stigma. If we grew better at recognizing it, perhaps, we might write better and richer stories of our own sorrows and, more important, those of others.

What’s an example of a condition that’s treated differently in different cultures?

I’ll give you an example of something that’s treated completely differently in the same location by a medical doctor and by his community. A man I’ll call Tamzo, who lives in rural Namibia, has what we would call schizophrenia. He walks 20 kilometers to the village once a month to get antipsychotic medicine. The Western doctor there writes down his diagnosis as schizophrenia. But at home he is thought to be the victim of a curse that somebody placed on their village that settled randomly on Tamzo. In his family and his village, as long as he is not hearing voices, he’s not considered at all to be sick. Whereas in the clinic, it’s “once labeled, always labeled.”

Your book discusses the relationship between capitalism and stigma. How has it informed beliefs about mental illness?

When capitalism took hold, we started to value individual autonomy and productivity for everybody. Before that, we didn’t hold a person responsible for all of their differences and all of their successes and failures. One of the things that characterized the first asylums in the 1700s, particularly in England and France, were that they were for people who violated the goals of productivity. They were idle, they didn’t work, or they were criminals. The asylums didn’t separate people into these different categories; they were all just the idle. It was only after humanitarian reformers sought to separate out the criminals from the non-criminals that you finally had people with mental illness (what was called insanity) by themselves, and then scientists could see them.

One of the problems for people with disabilities in general is what Alexis de Tocqueville observed in the early 1800s: In the U.S., the hero is the individual. People with disabilities aren’t necessarily always able to be independent. By the very nature of capitalism, the person who depends on others, who lives with others, or who isn’t an efficient worker is considered to be a failure.

How might that manifest today?

Something that really affects people is the idea that they can’t live up to capitalist values. We learn that certain occupations are valued more than others. In the book, I tell a story about my daughter with autism, Isabel. She loves to clean, and she’s very good at it. She got an internship at CVS, so the employer and my wife and I went over her duties. Isabel said, “When I get here in the morning, I’m a cleaning lady.” The employer snapped at her and said, “You are not a cleaning lady—you are a retail associate!”

It was a perfect example of how we learn that some ways of being are more valued than others. Until that moment, Isabel hadn’t realized that there was anything wrong with calling yourself a cleaning lady. There is nothing wrong with that.

The book also discusses the influence of war. How have wars altered the way people think of mental illnesses?

Wars can lead to massive transformations in all areas of life, including how we think about human behavior. The whole field of psychological testing derives from World War I and World War II. Various kinds of therapies that we take for granted, like community therapy, milieu therapy, and many other therapeutic techniques and medical technologies, all have their origins in wars.

The other thing is that each war creates new symptoms. In the Civil War, people experienced stress by having “soldier’s heart” or nostalgia. There was shell shock in World War I, war neurosis in World War II, and PTSD after Vietnam. These ideas come to fruition within the wars, but then they generalize to the community at large. Wars say that you can be strong, the ideal patriotic masculine warrior—and you’re still a human being that is going to be distressed by trauma.

Are we at a transition point in eradicating stigma?

I hope so. There’s been a real increase in the number of people who want to become psychiatrists and clinical psychologists. And I have a sense that, especially among young people, it’s expected to talk openly about things that people used to be ashamed of. Celebrities and athletes have been coming forward, like Lady Gaga, Bruce Springsteen, Jane Fonda, and Metta Sandiford-Artest.

But my real heroes are the people like my students who, on the first day of class, tell everyone, “I have Tourette syndrome, so please don’t be too upset when I say something that is inappropriate. I’m trying to control it, but sometimes I’ll say a swear word.” Or the student who says, “Getting diagnosed with ADHD was one of the best days of my Freshman year. For the first time, somebody saw that I wasn’t lazy or stupid. I just needed support.”

I’m not as optimistic about the most serious conditions. Things like schizophrenia and substance abuse threaten the ideals of capitalist society, that we should always be in control and masters of ourselves.

What led to this transition point?

So many things have changed the way we view human suffering and disability in general. You can take a particular case, like autism, and see how much our changing views of autism have come about because of our changing economies. The people who used to be denigrated for being “computer nerds” are now our heroes.

We’re also appreciating remote work. We’re starting to value stay-at-home parents more, and stay-at-home dads, which used to be considered weird. Why is that important? Being able to value a stay-at-home dad is to say that you are not necessarily disabled if you are not engaged in wage labor. You’re not a bad person if you’re not the sole breadwinner. The person with the disability who lives with their family, who doesn’t move out at the arbitrary age of 18, isn’t seen as violating some set of social rules. The disability rights movement, which includes the rights of people to have new identities, is also expanding the view that we all exist on a spectrum and that we can change over time. Being human means having some fluidity and change. Our views of mental illness are following that as well. It’s this openness and fluidity that I see as the tide that’s raising all boats.

Which is not to say that people aren’t suffering or discriminated against due to societal beliefs. But we’re more aware that that’s a form of suffering that we can eventually have control over. Because culture created it. If culture created it, we can change it.

How can people continue striving to eliminate stigma?

One of the things that bothers me is how much effort has been put toward eradicating stigma through education and awareness, like public service announcements and commercials. There’s nothing wrong with that, but Patrick Corrigan at the University of Illinois wrote a book called The Stigma Effect, in which he’s pretty clear that those things don’t work very well.

So, what does work? When we have interactions. We can get all the education we want, but if we don’t have proximity and interaction with networks and family who have mental illness and talk about them, we’re not going to get where we want to go.

One substitute for proximity is cinematic and television depictions. When I started working on autism in South Korea in the early 2000s, nobody would talk about mental illnesses. On autism, they would say, “Oh we don’t have that here,” or “We do, but it’s very rare.” If I heard somebody had a friend or colleague with autism, they would say, “They have autism, but you can’t talk to them because I never mentioned that I know.” It was so secretive. Today we’re seeing change in South Korea led in part by cinematic and television depictions. The Good Doctor, for example, was invented in Korea. It showed autism in a way that it had never been depicted before.

Grinker credits the influential social psychologist and sociologist Erving Goffman for formulating and publicizing the concept of stigma: society’s shunning or ostracizing of a person or group based solely on appearance, behavior, beliefs, customs, or ways of thinking or living in the world that don’t align with that of the majority and are judged unacceptable or undesirable. In the case of mental illness, it’s through stigma, Grinker writes, that society makes psychiatric conditions “a double illness: fi rst, the ailment itself, and second, society’s negative judgment.”

That point hit home for me. My memory came from the 1950s, an era when Aunt Anne’s condition would have been—and was, I learned from eavesdropping on my father—seen as a blot against the pristine “normalcy” to which post–World War II America aspired. That time stamp is relevant because, as Grinker points out, such attitudes can—and do— change over time. Witness the readiness of so many public fi gures today to break the silence about their own or their family members’ struggles with different facets of mental illness.

Grinker further emphasizes that stigma around mental illness isn’t a part of many cultures across the globe—a point he proves with extensive research on perceptions of mental illness in communities ranging from South Korea to Namibia and the Democratic Republic of Congo. For instance, Tamzo, who lives in a remote village in the Kalahari Desert, walks 24 miles to the main village each month to pick up medicine that will keep at bay the distressing, hallucinatory voices he hears. He has schizophrenia, but because his community “accepts differences we [Americans] have shunned,” they accept and take care of him, Grinker writes. “No one there expects a condition like schizophrenia or autism to defi ne a person as a whole.”

Contrast that example to America, where ongoing advances toward greater inclusion and acceptance of not just mental illness but many types of neurological differences, including autism, still have a ways to go. With that in mind, Grinker documents, fi rst, how those attitudes became entrenched to begin with and, second, how contemporary culture is paving the way toward change.

Grinker begins by chronicling the evolution of Western attitudes toward the mentally ill. It was in the late Middle Ages that “social undesirables” started to be rounded up and incarcerated in asylums, such as the infamous British institution that came to be known as Bedlam, he writes. A major reason they were considered undesirable was that they were unable to work, or be economically productive—a disability frowned upon in Western economies increasingly driven by market values that judged people’s worth primarily by their ability to make money and support themselves. At first, it didn’t even matter why someone couldn’t work: “People who worked deserved to be free; people who did not work, even people maimed in an accident, deserved only to be excluded,” Grinker writes.

Over time, such undifferentiated ostracization gave way to the building of separate institutions: prisons to house lawbreakers, and hospitals to treat the mentally ill. How ironic, then, that despite reform movements from the Industrial Revolution and on through today, the failures of our national mental health system have led to the destruction of most mental health hospitals, whose closures have cast many thousands of mentally ill people onto the streets, where they’re often picked up by the police for disturbing the peace and left to languish, for the most part untreated, in jail.

Grinker also brings his own family’s involvement with psychiatry and mental illness into the story. His great-grandfather, Julius, a nationally recognized early 20th-century neurologist, staunchly believed “that insanity was caused by a person’s inability to control their impulses— especially the desire to shop.” The misogynistic stigma was implicit, with this type of nervous mania, known at the time as hysteria, the diagnosis of choice for women.

This feminized stigma only changed in the wake of World War I, Grinker recounts, with the advent of a new mental health phenomenon: the syndrome that was then called shell shock. A devastatingly large number of soldiers, mostly male, were exhibiting many of the symptoms of hysteria, including anxiety, panic, lethargy, and physical fi ts affecting mind and body. Their suffering generated public sympathy for mental distress incurred as a result of their war service, but military physicians worried that labeling brave men with the diagnosis of a “female” disorder would lead them to refuse treatment. Hence, shell shock. Grinker comments on this little-known legacy of war as destigmatizing to mental illness and neurodiversity: “Though the compassion quickly receded during peacetime, the nations at war had trained doctors to do things they could never have imagined before, such as providing short-term therapies . . . or developing surgical methods to repair the genitals of men wounded in combat—the same methods that would make possible the fi rst gender-affi rming surgeries.”

During World War II, Julius’s son Roy, Grinker’s grandfather and a psychiatrist, further contributed to destigmatizing mental illness, having studied with and been psychoanalyzed by Freud in Vienna in the 1930s. Stationed in Algeria in the midst of Rommel’s desert assault on the Allied forces, he sought to apply a humanistic understanding to soldiers’ psychic wounds, bringing relief by listening sympathetically as they recounted their experiences of combat. It was a kind of short term psychoanalysis to help staunch the terrible symptoms that, in the aftermath of the wars since then, we began to call post traumatic stress disorder. Indeed, Grinker writes, his grandfather’s work and the resulting study that he coauthored with a colleague, Men Under Stress, “played an important role in transforming psychiatry from asylum administration to short-term therapy for a more diverse and less acutely ill patient population.”

But the perception of what’s normal, and the stigmatization of what’s not, persists. Grinker, whose daughter Isabel has a form of autism, brings particular insight to the ways in which companies are beginning to change their perceptions of the skills that employees on the spectrum can contribute. James Mahoney, director of the Autism at Work Program at JPMorgan Chase, explained to Grinker that “capable people on the autism spectrum often get shut down because of the interview process; traditional interviews amplify the defi – cits of autism but not what the autistic person is actually good at,” their conversational awkwardness getting in the way of presenting their expertise, say, at computer coding. The company addressed that obstacle via an email-based job application, which focused on skills and experience, and began providing coaching support and mentors to help their new employees overcome any social challenges. This is one among many successful employment programs, illustrative of a positive trend in acceptance and destigmatization.

Grinker’s argument is powerful, the breadth of his knowledge extraordinary; however, because he jumps back and forth so frequently among so many perspectives—from psychiatry to anthropology to economics to history to memoir—the experience he weaves can be dizzying. Nor will everyone agree with Grinker’s view of capitalism as a major factor driving the stigma of mental illness.

But his point is essential. “Stigma is not a thing but a process, and we can change its course,” he writes. And the key to doing so is accepting that nobody’s normal.

Contributing editor Diane Cole is the author of the memoir After Great Pain: A New Life Emerges, and writes for many national publications, including The Wall Street Journal and NPR online.

Defining ‘normal’:

Grinker traces the ‘invention’ of mental illness and its constant companion, stigma, to economic forces set in motion in late 17th-century Europe by the industrial revolution and capitalism. With industrialization, people with intellectual disabilities, schizophrenia and other serious brain conditions were moved out of their homes and into asylums, along with criminals, debtors and addicts — basically anyone viewed as incapable of being a productive and self-sufficient worker.

Once institutionalized, people were sorted by their caretakers into categories: “idiotic” and “insane,” “probably curable” and “probably incurable,” and eventually more specific, medicalized terms. The words “normal” and “abnormal” were borrowed from mathematics and statistical averages.

As new categories of sickness and perceived deviance were added — mania, melancholia, dementia, masturbation (an actual diagnosis!) — the number of people consigned to asylums exploded in England and the United States. “Experts were at a loss to explain the apparent epidemic created by illnesses they themselves had invented and were now counting,” Grinker wryly observes.

Among Grinker’s themes is the idea that wars bring greater knowledge of mental illness and sympathy for those affected by it, by showing that even the best and bravest among us can succumb. He notes that psychiatry’s bible, The Diagnostic and Statistical Manual of Mental Disorders (DSM), first published in 1952, was largely adapted from the U.S. Army’s classification of mental disorders.

In peacetime, though, the sympathy and knowledge tend to get lost, and stigma rebounds. Grinker describes how shell shock, defined during World War I, later became associated with cowardice, and how Vietnam War veterans with post-traumatic stress disorder (PTSD) came to be seen as volatile and dangerous.

If there is one silver lining to the never-ending wars in Afghanistan and Iraq, he writes, it is that “these wars have broken the cycle of building capacity for mental health care and then forgetting about all that was achieved.”

The first half of Grinker’s history is studded with odd, captivating facts: The Puritans did not allow their toddlers to crawl because crawling was seen as sub-human; in the late 1600s, nearly 1 percent of the population in Paris, France, was banished to an asylum; cornflakes were originally marketed as a way to deter masturbation; in the U.S., unsightly beggar ordinances, known as “ugly laws,” aimed to keep poor people with visible disabilities and disfigurements off the streets.

The author sometimes gets carried away with his own bold assertions, writing at one point about “the invention of the female, a category of person that didn’t exist before the late 1700s.” He may be referring to the social construct of femininity, but still, this is a little silly.

‘A little OCD’:

Grinker’s book comes alive when it deals with the modern era, where he can tap living memory. He covers big events such as the deinstitutionalization movement of the 1970s, which he details with statistics and a remarkable eye-witness account. Elsewhere he deploys observations from his own cross-cultural field work that illuminate the degree to which stigma and disability are social constructs.

He describes, for example, meeting the family of a nonverbal 9-year-old boy with all the classic traits of autism in a Namibian village of Ju/’hoansi hunter-gatherers. The boy’s father values his son’s talent for herding goats and finding lost items. Asked if he worries about who will care for the boy after he and his wife are gone, the father is genuinely perplexed. He gestures toward his neighbors and says, “We won’t all die at once.”

Stigma is also deeply embedded in language — a point Grinker demonstrates in myriad ways. In 2002, when psychiatrists in Japan decided to change the Japanese word for schizophrenia from a phrase that connoted a permanently ruptured mind to one that implies a treatable “integration disorder,” Grinker notes, it greatly raised public acceptance of the diagnosis. Similarly, PTSD became more acceptable in Nepal when portrayed as a problem of the “heart-mind” rather than the “brain-mind.”

In recent decades, neuroscientists have expressed the hope that uncovering the precise genes and biological mechanisms behind brain conditions such as autism and schizophrenia will make them more equivalent to, say, heart disease or diabetes, and therefore reduce stigma.

Grinker disagrees. He notes that in some parts of the world a genetic basis becomes even more stigmatizing, as it casts doubt on bloodlines. And he believes that mental illness can never be entirely reduced to biology. As with hypertension, osteoporosis, hypercholesterolemia, obesity and many other conditions, the line between healthy and not healthy is constructed, or, as he puts it, “drawn more by culture than by nature.”

Grinker applauds the reconception of neuropsychiatric conditions as continuums or spectrums, as depicted in the current edition of the DSM. To Grinker, it is a sign of progress and shrinking stigma when neatniks refer to themselves as “a little OCD,” in reference to obsessive-compulsive disorder, or nerdy types say that they are “on the spectrum.” Such phrases demonstrate how the stigma attached to these conditions has ebbed, and they bring us closer to Freud’s vision of mental illness as something we are all prone to, one way or another.