People like to talk about transformative social change, but almost everyone gets it wrong. When I was a teenager, for example, there was much talk about the pressing challenges of finding meaningful ways to fill the bourgeoning amount of free time that our rapidly improving technology would inevitably bring. These days, such talk produces the same sort of whistful smile as the flying cars that futurologists confidently told us that we’d be piloting, Jetson-like, to our personal helipods.
Meanwhile, gay marriage is now largely accepted throughout most Western countries, and recreational marijuana use is legal in no less than 8 American states. Maybe somebody saw that coming, but nobody I know did (myself most definitely included).
When it comes to mental illness, on the other hand, the record is much more mixed. As neuroscience strides ahead at stunning speed and psychologists rush to embrace the likes of fMRI and other real-time imaging tools, it’s difficult to say whether or not, when all is said and done, we live in a more or less tolerant society than when I was in high school.
A common concern for the mentally ill and their families is that of stigma, which often make it perilously difficult for them to get both a proper diagnosis and ongoing treatment for their conditions, embedding them in a vicious cycle of despair and societal exclusion.
One particularly frustrating aspect of stigma is that it doesn’t simply disappear as we change our level of scientific understanding. Some years ago UC Berkeley psychologist Steve Hinshaw told me that one particularly unfortunate side-effect to viewing conditions like ADHD and schizophrenia as “brain diseases” is that many people give sufferers an even wider berth than before, now convinced that they are cursed with an irredeemable biological impediment.
Stigma was never far from my mind when I met up with Elyn Saks in Los Angeles. Elyn is Orrin B. Evans Professor of Law at the University of Southern California Gould School of Law, and an expert on many areas at the intersection of law, ethics, sociology, and psychology – most notably mental health law. As expected, she was particularly forthcoming about the pernicious effects of societal ignorance of mental illness and the associated stigma:
“There are a lot of misconceptions, especially about schizophrenia. One is just confusing the nature of the illness, thinking that it means multiple personality disorder, which is a completely different category of illness. Even more toxic are two beliefs: that people with this illness can’t live independently, work, or have relationships; and even more damaging than that is the idea that people with the illness are really dangerous and have to be shunned, tossed to the side and kept away from the general public. That’s just not true. The percentage of violent crime caused by people with mental illness is something like 2% or 3%. People with mental illness are much likelier to be victimized, to be killed and assaulted, than people who don’t have schizophrenia. There are huge misconceptions about that.
“The worst thing about stigmas is that they deter people from getting care. People shouldn’t have to suffer, but they will if they don’t get care. What do we do about stigma? The media needs to be responsible, so that when violence happens by someone with an illness, you at least contextualize it, also telling good stories, success stories.”
Elyn, as it happens, is a pretty resounding success story herself. Diagnosed with schizophrenia as a student, she has nevertheless managed to turn herself into a top- flight scholar, MacArthur Foundation Fellowship winner, and Director of her eponymous Institute for Mental Health Law, Policy and Ethics at USC. Her moving memoir, The Center Cannot Hold: My Journey Through Madness, was a resounding bestseller.
Still, even she, with all her success, was hardly beyond the shadow of stigma. In fact, she told me, one of her close friends strongly encouraged her to write her memoir anonymously for fear of forever being viewed as “the schizophrenic with a job”:
And then, once that bridge had finally been crossed, she was promptly faced with another, confronting a world that stubbornly refused to draw the right conclusions from her inspiring experiences.
“I was invited to be on a big TV magazine show that was going to have a segment on schizophrenia. At the last minute, they said they couldn’t interview me because I wasn’t representative enough. I thought, Don’t you want to show the range of adaptations? Don’t you want to show the success stories as well as the failures?”
It’s easy, of course, to blame the media. What’s much harder to swallow is that “the media” is, simply put, us. The media, after all, no longer tell us that women shouldn’t vote, or that slavery should be tolerated, or that Californians shouldn’t smoke a joint when they feel like it.
Which is all to say that, of course, schizophrenia, bipolar syndrome, and many, many, more conditions found in the Diagnostic and Statistical Manual of Mental Disorders can in some sense be properly looked at as “brain diseases” – after all, it’s pretty hard to imagine that they can all be somehow attributed to the pancreas, say.
But that’s not the point. While the medical geneticists and cognitive scientists wrestle with the all-important mechanistic details, the rest of us should take a page out of Elyn’s book and ask ourselves how we can all work together to promote a genuine leap in our societal understanding of mental illness to offer the highest possible levels of dignity and treatment to all concerned.
“There’s a study that I’m doing with UCLA and USC on “high-achieving” people with schizophrenia. What we do is, we get our subjects, ensure they’ve received the proper diagnosis, and then we do a couple of interviews with them about what their illness looks like and the kinds of things they do to keep themselves sane.
“When I used to go on the road with my story, people would say, ‘Oh, you’re unique. There aren’t other people like you.’ But we found 20 people fairly quickly: we got two MDs, a JD, a PhD Candidate, a school teacher, a CEO of a not-for- profit, full-time students, full-time caregivers, and so forth. There are people out there like me.
“I asked the Principle Investigator, Steve Marder , who’s a well known schizophrenia expert, what percentage of people with schizophrenia are high-functioning, and he said, ‘Well, I’m not sure Elyn, but the real question is, How many could be if we really invested resources into their care?’
“And I thought that was exactly the right answer.”
For a complete list of Ideas Roadshow videos with Elyn Saks, click here. The IR eBook Mental Health: Policies, Laws and Attitudes containing the unabridged Ideas Roadshow conversation with Elyn and a range of additional resources is available on Amazon, while the podcast of our one-hour video with Elyn is now freely available on iTunes.
On our landing page you can freely watch 2 videos featuring Elyn Saks: Schizophrenia Misconceptions and Comparing Mental Health Practices.
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