“[W]alking the streets of San Francisco and seeing untreated, seriously mentally ill people would convince most observers that the biggest problem of the mentally ill is not stigma. Yet millions of tax dollars are spent on anti-stigma campaigns.”

—Fred Martin, mental illness advocate

Mental health industry advocates spend innumerable hours teaching the public “there is stigma to mental illness.” But stigma is a “mark of shame,” “token of disgrace,” or a “discreditable characteristic.” Advocates should know better than anyone that serious mental illnesses are no-fault biologically based brain disorders, so there is no mark of shame or disgrace to having one. It is true that some people are uneducated and misinformed, and they are prejudiced against and discriminate against those with mental illness. We should fight that prejudice and discrimination the same way we fight prejudice and discrimination directed against African Americans, gays, and other minority groups: by changing laws, not teaching there is stigma. Over fifty years ago, a major federal task force explained stigma in a way that would be politically incorrect today:

Mental illness is different from physical illness in the one fundamental aspect that it tends to disturb and repel others rather than evoke their sympathy and desire to help…. The reason the public does not react desirably is that the mentally ill lack appeal. They eventually become a nuisance to other people and are generally treated as such.1

Stephen Seager, author of Behind the Gates of Gomorrah, came to a similar conclusion following similar logic:

Stigma is a Greek word which means a “dot, puncture, brand or mark.” What is the mark? It's the often bizarre, psychotic, violent behavior of those so afflicted. This is what marks the serious mentally ill. This is what causes the public aversion. This is what we should be spending money to correct. People will never tolerate bizarre, violent, psychotic behavior. Never have. Never will. To think otherwise is tragically naive.

If we want to reduce the lack of appeal, eliminate the mark, then we must change the laws so they facilitate treatment. Instead, mental health advocates have raised stigma to deity status. It is as if mental illness doesn't exist, and stigma itself is the illness. It is difficult to find a mental health nonprofit that doesn't solicit stigma funds or a government agency that doesn't dole them out. Sadly, thousands of advocates who should be fighting against discriminatory laws and prejudicial policies have been diverted to this quite tangential issue. And fear of losing their government stigma money prevents these “stigma-busters” from speaking up on policy issues. The industry claims that stigma is the major impediment to care, but as seen in chapter 6, that is clearly not true for the seriously mentally ill.

THE INDUSTRY “FIGHTS STIGMA” BY SHUNNING AND HIDING THE SERIOUSLY ILL

The mental health industry fights stigma by hiding the most seriously ill. Stigma-busters create presentations designed to communicate that people with mental illness are high-functioning, successful executives, “just like you and me.” The public service announcements (PSAs) never show the homeless, psychotic, incarcerated, or untreated. Advocates feel that would cause stigma. TV host Dr. Phil aired a show featuring an obviously mentally ill and highly symptomatic Shelley Duvall, an actress in The Shining.² Ms. Duvall made bizarre claims that Robin Williams is still alive and is a “shape-shifter” and that the Sheriff of Nottingham and Robin Hood were both threatening her. Rather than thanking Dr. Phil for letting the public see what serious mental illness looks like, the Internet blew up with stigma-busters shaming Dr. Phil for letting the public see the dark side of mental illness. What these advocates don't understand is that trying to gain support for mental illness by only showing the highest functioning is like trying to raise money for starving children by only showing the well-fed. The 1961 Joint Commission on Mental Health and Mental Illness identified the folly of this approach by calling for public education campaigns “to overcome society's many-sided pattern of rejecting the mentally ill, by making it clear that the [seriously] mentally ill are singularly lacking appeal, why this is so, and the need to consciously solve the rejection problem.”3 Today, those who lack appeal are simply kept in the closet.

Stigma is perhaps the most unifying ideology and common income line in the mental health industry. It's also a weapon used to oppose anything the industry doesn't like and drive funds to anything they do. The industry has used the battle cry of “STIGMA!” to oppose Assisted Outpatient Treatment, civil commitment reform, gun restrictions, expanding access to hospital care, and even getting the right diagnosis.⁴ The industry's message has reached high places, with President Obama declaring, “We've got to get rid of that stigma.”⁵

THE INDUSTRY “FIGHTS STIGMA” BY MUZZLING THE MEDIA

As part of their attempts to reduce stigma, NAMI and others insist reporters avoid using the term “suffering” when describing people with mental illness.⁶ Yet many people with serious mental illness do suffer, and we shouldn't be hiding that from the public. Trying to “normalize” the illness makes it less likely, not more likely, that the public will provide help. When someone with untreated serious mental illness commits a violent act, rather than using that as a teachable moment the industry tries to quash media coverage because it believes it is the coverage, not the act, that creates stigma:

• After the Sandy Hook shootings, the Bazelon Center for Mental Health Law said, “The media coverage and policy debate often turns to scapegoating, stereotyping and discriminating against people with mental illnesses (even when it is unclear whether the perpetrator had a mental illness), wrongly branding Americans with mental illnesses as dangerous and violent.”⁷

• Another industry leader wrote in the New York Times, “This kind of coverage can only add to the discrimination and prejudice associated with mental health conditions and drive people away from seeking treatment.”8

• After the Navy Yard shooting, when 60 Minutes reported on how to help those who do become violent, NAMI and Bazelon went on the attack.⁹

But it is not media reporting on violence that causes stigma. It is violence by the minority that tars the nonviolent majority. “Probably nothing contributes more to the stigmatization of mental illness than the commission of violent crimes by persons who are clearly severely mentally ill.”¹⁰ Researcher Henry Steadman wrote as long as there is violence, “it is futile and inappropriate to badger the news and entertainment media with appeals to help destigmatize the mentally ill.”¹¹ No mental health stigma PSA, radio spot, or presentation to a high school class will trump the bullet of a mass shooter. A board member of the National Council for Community Behavioral Healthcare acknowledged, “It only takes one or two well-publicized allegations of crime to further ingrain the stigma against people with mental illness.”¹² The surgeon general rhetorically asked, “Why is stigma so strong despite better public understanding of mental illness?” He answered his own question: “The answer appears to be fear of violence: people with mental illness, especially those with psychosis, are perceived to be more violent than in the past.”¹³ The best way to reduce stigma is to reduce violence, and the best way to do that is to provide treatment for the seriously ill.¹⁴

CONCENTRATING ON STIGMA INCREASES STIGMA

Even if one accepts that stigma is a reason people with mental illness don't access care, then belaboring it will make them less likely to get care. The mental health industry recognizes repeated media mentions of “mental illness” and “violence” in the same sentence reinforces the public's association of the two, but it doesn't recognize that mentioning “mental illness” and “stigma” in a single sentence does the same.¹⁵

Fighting stigma requires teaching those with mental illness that there is none. Glenn Close's Bring Change 2 Mind campaign gets it right. Her PSAs feature people with mental illness wearing shirts boldly emblazoned with the name of their illness: “schizophrenia,” “bipolar,” and others. It encourages those with mental illness to fight prejudice and discrimination by being open about their illness. Kevin Earley, a young man with serious mental illness wrote, “If you are afraid to tell your story, then the stigma wins.”16 A former NAMI consumer board member told me, “The most stigmatizing thing we do is talk about stigma.”

What bothers me most is that stigma has become the black hole of advocacy, stealing thousands of advocates away from fighting to change our laws and policies.

The following chapter describes major federal initiatives and legislation affecting the seriously mentally ill, including those that make treating people with serious illness more difficult.