Stephen Hinshaw, author of The Mark of Shame: Stigma of Mental Illness and an Agenda for Change, is a Professor and Chair of the Department of Psychology at the University of California at Berkeley. His new book questions why the mentally ill in America are still discriminated against and what can be done about this longstanding problem. Not only does this book address a serious problem in our society, but it is also, as Hinshaw writes in his introduction, “a labor of love.” Hinshaw was kind enough to answer a few questions for us, check out what he has to say below.
In writing The Mark of Shame were you surprised by anything you learned?
Through all of the research – on history, on cultures, on social psychology and evolutionary psychology, on programs that might change stigma – perhaps most surprising and most distressing was the realization that despite our sophistication, our gains in knowledge, and our gains in evidence-based treatments these days, there is too often shame, concealment, and distancing: In short, there are still huge levels of stigma. We have a long way to go.
Is mental illness real? If so, how prevalent is it?
An amazing series of studies first appeared in 1996, sponsored by the World Health Organization. These were rigorous analyses of the economic impact of various diseases and illnesses (what are called the “Global Burden of Disease” studies). They revealed, to the surprise of many, that mental illnesses are now among the most debilitating and devastating conditions on earth–with depression at #2 (heading to #1 by 2010) and bipolar disorder, schizophrenia, and obsessive-compulsive disorder also in the top 10. They lead, all too often, to economic disaster, risk for health problems, and even suicide.
So, despite the claims of all too many naysayers and antipsychiatrists, mental illnesses are quite real and quite devastating. They often lead to major problems in life adjustment, to loss of relationships and jobs, to economic difficulties, and to untold pain for individuals and their families. They rob people of hope; they increase the risk for physical illnesses, like heart disease, as well.
Severe forms of mental illness occur in about 6% of the population, with moderate forms appearing in another 20%. But tellingly, even for people who recognize that mental illness exists, there are delays in the seeking of treatment for many years (the average is a decade), revealing both the shame and stigma attached to mental illness and the low levels of insurance coverage to secure treatment (in other words, a lack of parity).
In fact, it is the degradation, shame, and stigma that surround mental illness that are more devastating than the symptoms themselves.
In your book you claim that public attitudes towards mental illness are more negative now than they were a century ago, what is this assertion based on? How can you measure public attitudes?
There are several ways to measure attitudes and beliefs. The most common – questionnaires of “explicit” attitudes – continue to reveal that severe mental illness is feared and stigmatized, even more than during the 1950s, which is a paradox, because there is so much more knowledge and openness today. It may well be that mental illness continues to bring up associations with violence, danger, threat, and incompetence, as well as personal weakness. But such questionnaires are susceptible to ‘trying to look good’ and may reveal only the tip of the iceberg regarding actual levels of stigma.
Newer research deals with “implicit” attitudes, those expressed quickly and unconsciously. Implicit measures of racial bias show that it exists strongly, even in people who fail to admit prejudice on traditional questionnaires. These kinds of measures are just beginning to be applied to mental disorder.
Still other ways of assessing prejudice, discrimination, and stigma are also quite revealing. In behavioral research, it’s actual social interactions that are key–and these reveal that if a person expects to be interacting with someone with mental illness, distancing and even punitive behavior result. This is especially the case when mental illness is branded as completely genetic. Some thought that putting mental illness into the medical model (replacing earlier beliefs that mental illness resulted from evil spirits…or, more recently, from bad parenting) would eliminate stigma. Yet simplistic, all-or-none biogenetic attributions may make mental illness seem hopeless, permanent, and even subhuman.
What is your advice for people who suffer from mild mental disorders? How open should they be? How concerned about stigmatization?
Forms of mental illness that fall short of psychosis and utter despair – for example, learning problems, attention problems, many phobias – might seem to be less of an issue with regard to stigma. But paradoxically, such mild-to-moderate forms may actually receive a lot of stigma, given that they aren’t as obvious and apparent as more severe conditions – and because many observers may feel that the person should simply control his or her behavior patterns. Problems that affect learning and schooling are particularly stigmatizing, given the value of education in current society. I don’t suggest that everyone should disclose a mental disorder to anyone he or she meets, but if it’s an issue of jobs or housing or education, there are laws on the books now that prevent discrimination, and openness may level the playing field.
What steps can the average citizen take to increase awareness about mental illness and fight stigmatization of their peers?
First, talk about the mental illnesses that may well exist in your family, or yourself. Second, join advocacy groups, for solidarity and a committed sense of “taking on” stigmatization in productive ways. Third, challenge the extremely stereotyped media images that still exist (which commonly portray mental illness as inevitably linked to violence, despair, and hopelessness). Fourth, fight for parity legislation, as well as changes in laws and policies that currently prevent people with mental illness from voting, holding office, driving, or maintaining child custody. Fifth, get access to evidence-based treatments, because mental disorders (despite the stereotypes of permanence) are quite treatable.
What advice can you offer for parents of children who suffer from mental illness? How can they best support their child?
There may be nothing as painful as realizing that your child has a serious behavioral or emotional condition. Yet admitting it, getting a thorough diagnostic evaluation, and seeking treatment are all necessary steps. It may take getting the schools involved – after all, federal legislation exists, called IDEA, that mandates evaluations and accommodations for children and adolescents with diagnosed mental disorders. Linking with other families for support, education, and advocacy is extremely important, too.
What was it like growing up with a father who was mentally ill? How did it effect who you are today?
This was one of the central experiences of my life. All I really knew as a child was that my dad was absent, periodically. I didn’t know that he was in mental hospitals during those absences and that he and my mother were under doctor’s orders “never to tell your children about mental illness; they can’t understand.” The silence was broken when I would come back, on breaks, from college, and my dad began to reveal his up-and-down life: Brilliant accomplishments intermixed with psychosis and despair. Misdiagnosed for 40 years with schizophrenia, he finally received an accurate diagnosis of bipolar disorder with my help. All of these experiences led to my interest in psychology, my writing about my father’s life, and ultimately my strong interest in stigma, which he clearly felt throughout his life.