The Mark of Shame: Stigma of Mental Illness and an Agenda for Change
Earlier today we posted A Few Questions with Stephen Hinshaw, author of The Mark of Shame: Stigma of Mental Illness and an Agenda for Change. There is also a great post on the “Work in Progress” blog. We wanted to make sure you understood what an important book this is, both for those who suffer from mental illness and everyone else who undoubtedly interacts with the afflicted. Below we have excerpted part of Hinshaw’s introduction to his book.
Mental illness has been part of the human condition for as long as our species has existed, affecting countless individuals, families, and communities. Major advances regarding mental disorders are now appearing with regularity, particularly with respect to treatment options. Yet emotional reactions to mental disorder are still dominated by fear, pity, and scorn; societal responses continue to be characterized by banishment, punishment, and neglect. Although the very nature of mental illness makes it understandable that empathy is difficult to sustain, the lack of respect and fairness signals deeper currents.
At one level, things appear to be changing. People with mental disorders are “coming out of the closet” with increasing frequency. Celebrities and authors now openly disclose their stories of substance abuse, mood disorder and treatment with electroconvulsive therapy (Kitty Dukakis), postpartum depression (Brooke Shields), bipolar disorder (Jane Pauley), or suicidality (William Styron); star athletes are coming forward with their experiences in therapy (for example, Alex Rodríguez, the New York Yankee and American League Most Valuable Player in 2005). Even those without celebrity status are more open and increasingly likely to admit that they see a therapist or take psychoactive medications such as Prozac or similar compounds. Have we in fact entered a new era of openness and tolerance?
In 1999 President Bill Clinton and Tipper Gore sponsored the first-ever White House Conference on Mental Health. This conference made public the importance of mental disorder and stated explicitly that people with mental disorders must be accorded the same respect as those with physical illnesses. During that same year the Surgeon General of the United States, Dr. David Satcher, released a report on mental disorder, the first such report ever to emanate from that high office. Noteworthy in this landmark document was the contention that stigma is the “most formidable obstacle to future progress in the arena of mental illness and mental health.” Both events gave hope that public discussion would become commonplace. With less fanfare, the New Freedom Commission on Mental Health reiterated, in the summer of 2003, that the current system of mental health care in the United States is “in shambles” and that core elements for change include greater public understanding of mental health issues, early detection of mental illness, elimination of disparities in access to care, enhanced scientific research, and a family- and consumer driven approach to service provision. At the same time, other nations are actively promoting national-level public-awareness campaigns.
These are indeed encouraging signs. But it is also important to examine the other side of the coin. For instance, harsh counterattacks by other celebrities have gained notoriety—for example, the berating of Brooke Shields by actor Tom Cruise, whose headline views in 2005 included the belief that mental illness portrays weakness and that medication treatment poisons the body. At a larger level, research funds on the causes of and treatments for mental illness still lag well behind expenditures for physical illnesses, and insurance coverage or mental disorders does not have parity with coverage for other conditions. Even professionals and scientists in the mental health fields must contend with stigma, as the study and treatment of mental disorder rank low in terms of prestige.
People with mental illness continue to suffer discrimination, including a lack of viable opportunities for housing and employment, as well as restrictions on the right to vote, obtain a driver’s license, or maintain child custody. These kinds of discrimination are often triggered simply by a history of mental disorder rather than by any documented disability. Media stereotypes emphasize the high rates of violence among those with mental illness and treat the entire topic with misinformation and even ridicule. The truth is that only a small subgroup of people with mental illness are likely to be violent—but the risk of being victimized by violent crime is far greater in people with serious mental disorders than in the general population. This fact conveys the marginal existence of far too many people who experience mental illness.
Throughout history people with mental disorders have been the victims of punitive, cruel, and even genocidal practices. Today, well-intended deinstitutionalization strategies, which have virtually emptied most mental hospitals, have lacked sufficient funding for community treatments. As a result, urban streets are flooded with individuals who quickly become homeless or who must live in facilities that can be as degrading as those of the large state hospitals of a few decades ago. In the remaining public hospitals, conditions are marked by understaffing, patient assaults, drug trafficking, dangerously high levels of psychotropic medications, and suicides. Such circumstances apply across the world; neglect and abandonment do not recognize national or cultural boundaries.
Given the negative perceptions of mental illness, and given the ignorance that is still rampant, it is not surprising that a great many people with mental disorders delay seeking help for years, even decades. Concealment remains a major means of coping, as a history of mental illness is near the bottom of the list of life experiences most people would ever wish to divulge. Family members are strongly affected, experiencing guilt, self-blame, closed doors, and a clear sense of psychological burden. Stigma toward relatives is fueled by the prevailing view that mental illness is caused by faulty upbringing—which until recently was the dominant perspective of the mental health professions.