‘Bootstraps’ and the Perpetuation of Illness

“Pick yourself up by your bootstraps.” This isn’t just a clichéd bit of advice. Here in America, it’s a creed – a distillation of our cult of the individual. Nearly all our heroes, from Davy Crockett to The Matrix’s Neo, from Abraham Lincoln to Chesley “Sully” Sullenberger, come in the size and shape we prefer: the salt-of-the-earth, against-the-grain individual who, despite poor odds, manages to single-handedly transform a time and place for the better. It may take a village to raise a child, but a true hero goes it alone.

We’ve built an impressive civilization around the primacy of individual agency. Our near-worship of human potential, and its attendants hard work and self-sacrifice, has given us everything from the light bulb to the internet. It is safe to say that in the last two-hundred years Americans have contributed more to the advancement of knowledge than most other people. We are a nation of hard workers hoping to become heroes. We persevere.

The ideology of individualism is a useful one, a beneficial one. But it’s not entirely true or always helpful. “Behind every good man is a good woman.” “It takes a village to raise a child.” These are aphorisms that pay lip service to the shortcomings of our individualist bent. And if this myth of personal agency – that if you look deep within yourself you can conquer anything – is not entirely true, then where exactly does this conviction clash with reality? Where does this belief system fail us the most? In the realm of mental illness.

A few days ago the New York Times ran a brilliant piece about how we’re exporting our “symptom repertoire” to the world, about how disparate cultures have begun to adopt our uniquely American expressions of mental anguish.

NOWHERE ARE THE limitations of Western ideas and treatments more evident than in the case of schizophrenia. Researchers have long sought to understand what may be the most perplexing finding in the cross-cultural study of mental illness: people with schizophrenia in developing countries appear to fare better over time than those living in industrialized nations…

Trying to unravel this mystery, the anthropologist Juli McGruder from the University of Puget Sound spent years in Zanzibar studying families of schizophrenics. Though the population is predominantly Muslim, Swahili spirit-possession beliefs are still prevalent in the archipelago and commonly evoked to explain the actions of anyone violating social norms — from a sister lashing out at her brother to someone beset by psychotic delusions.

McGruder found that far from being stigmatizing, these beliefs served certain useful functions. The beliefs prescribed a variety of socially accepted interventions and ministrations that kept the ill person bound to the family and kinship group. “Muslim and Swahili spirits are not exorcised in the Christian sense of casting out demons,” McGruder determined. “Rather they are coaxed with food and goods, feted with song and dance. They are placated, settled, reduced in malfeasance.” McGruder saw this approach in many small acts of kindness. She watched family members use saffron paste to write phrases from the Koran on the rims of drinking bowls so the ill person could literally imbibe the holy words. The spirit-possession beliefs had other unexpected benefits. Critically, the story allowed the person with schizophrenia a cleaner bill of health when the illness went into remission. An ill individual enjoying a time of relative mental health could, at least temporarily, retake his or her responsibilities in the kinship group. Since the illness was seen as the work of outside forces, it was understood as an affliction for the sufferer but not as an identity.

For McGruder, the point was not that these practices or beliefs were effective in curing schizophrenia. Rather, she said she believed that they indirectly helped control the course of the illness. Besides keeping the sick individual in the social group, the religious beliefs in Zanzibar also allowed for a type of calmness and acquiescence in the face of the illness that she had rarely witnessed in the West.

Mental illness is more of a crisis in America because we’re expected to take care of ourselves so completely. When we can’t – when our feelings overwhelm us to the point of breakdown – we have failed as individuals. And seeing illness as a personal failure doesn’t just suck; it’s a burden that can be fatal.

My sister was a casualty. An incredibly bright and hard-working businesswoman, she prided herself on managing a very busy schedule. She wanted a lot from life, but more than anything else she wanted to be “a success:” she wanted to buy her own car, live in her own house, run her own company, and raise a family, too. Independence with a capital “I.” (She loathed expectations of femininity. When we were kids I told her that I’d never heard a girl fart. From then on, she made a point of doing so in my presence – loudly.) By any measure, she gained the life she craved. But when illness struck, she was horrified, not so much by her feelings, but by her inability to master them, her inability to take care of herself. She wanted desperately to be independent. And quite suddenly, she couldn’t be.

More from the Times article:

The course of a metastasizing cancer is unlikely to be changed by how we talk about it. With schizophrenia, however, symptoms are inevitably entangled in a person’s complex interactions with those around him or her. In fact, researchers have long documented how certain emotional reactions from family members correlate with higher relapse rates for people who have a diagnosis of schizophrenia. Collectively referred to as “high expressed emotion,” these reactions include criticism, hostility and emotional overinvolvement (like overprotectiveness or constant intrusiveness in the patient’s life). In one study, 67 percent of white American families with a schizophrenic family member were rated as “high EE.” (Among British families, 48 percent were high EE; among Mexican families the figure was 41 percent and for Indian families 23 percent.)

Does this high level of “expressed emotion” in the United States mean that we lack sympathy or the desire to care for our mentally ill? Quite the opposite. Relatives who were “high EE” were simply expressing a particularly American view of the self. They tended to believe that individuals are the captains of their own destiny and should be able to overcome their problems by force of personal will [my emphasis]. Their critical comments to the mentally ill person didn’t mean that these family members were cruel or uncaring; they were simply applying the same assumptions about human nature that they applied to themselves. They were reflecting an “approach to the world that is active, resourceful and that emphasizes personal accountability,” Prof. Jill M. Hooley of Harvard University concluded. “Far from high criticism reflecting something negative about the family members of patients with schizophrenia, high criticism (and hence high EE) was associated with a characteristic that is widely regarded as positive.”

Widely regarded as positive, that is, in the United States. Many traditional cultures regard the self in different terms — as inseparable from your role in your kinship group, intertwined with the story of your ancestry and permeable to the spirit world. What McGruder found in Zanzibar was that families often drew strength from this more connected and less isolating idea of human nature. Their ability to maintain a low level of expressed emotion relied on these beliefs. And that level of expressed emotion in turn may be key to improving the fortunes of the schizophrenia sufferer.

My sister killed herself in 1999, just before the new millennium. She would have turned 37 last week, on January 10th. I can think of no one more independent and more responsible than she. She constantly goaded me into pushing myself to do more. “No one else is going to do it for you,” she used to say.

This is the dark side of American Individualism: those in need of help are loathe to seek it. This concept of Expressed Emotion, or EE, doesn’t just apply to the community; it applies to the subject as well. If friends and family are highly critical – if they are unsupportive of a person in breakdown – it’s likely the person has internalized that kind of thinking. My sister was probably the most “EE” of anyone in the family. In other words, nobody was harder on her than herself. Not surprisingly, this had a lot to do with how determined she was to persevere.

She could have used a little humility. Can’t we all.