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.