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In Defense of Stigma

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In Defense of Stigma

National Affairs January 13, 2020
Health PolicyMental Illness

Perhaps the most widely embraced priority among mental-health policymakers is that of reducing "stigma," or the mark of shame commonly associated with mental illness. Mental-health advocates blame stigma for a variety of challenges faced by mentally ill individuals, and argue that this prejudice is uniquely objectionable because, unlike discrimination against racial minorities, it is often overt. Yet while opposition to stigma is commonplace, it is worthwhile to assess its role and influence, and, even assuming it could be eradicated, consider what tradeoffs that might entail.

In assessing stigma's effects, mental-health advocates point out several obvious evils. Patrick Corrigan, a clinical psychologist who recently co-authored a lengthy government report on the subject, put stigma "in the same category as racism and sexism," arguing that it "permeates all of society and affects people at all levels." For example, a sense of shame can exacerbate the struggles of mentally ill people by making them reluctant to access programs and resources that might help them. Stigma can also contribute to mentally ill individuals being shunned or ostracized, thereby restricting their economic and social opportunities. It can be extremely challenging for people struggling with mental illness to find housing or a good job.

These and other barriers to treatment and independence are often blamed on an unwarranted prejudice toward the mentally ill. Rooting out stigma, advocates argue, would entail changing certain widespread, ignorant, and harmful opinions about mental illness, such as its connection to violence. But mental-health disorders vary widely, from mild anxiety to incapacitating schizophrenia. Many mental-health problems may be better understood as differing in kind from one another rather than in degree. And over the last several decades, examples have multiplied in which failures of mental-health policy stemmed from expecting too much from mentally ill people. A failure to discriminate — in the basic sense of parsing distinctions — may stifle sound mental-health policy just as much as excessive discrimination.

The costs of fighting stigma are not just financial. Efforts to help family members of mentally ill individuals access their relatives' medical records, or to commit mentally ill individuals to facilities where they and those around them will be kept safe, have been frustrated due to disproportionate sensitivity around the issue of stigma. Anti-stigma advocates are generally committed to the principle that mentally ill individuals be treated exactly the same way as everyone else, to the point where it may cause them or others physical harm. Resources devoted to public-education campaigns combating stigma would be better channeled toward, among other things, connecting those who need treatment the most with the appropriate services and benefits. The current mental-health system fails primarily because it is poorly designed, not because people are too ashamed to use it.

COMPASSIONATE DISCRIMINATION

Not every politician makes mental health a priority, but virtually all who do cite stigma as a leading cause of our system's failures. New York City's Democratic mayor, Bill de Blasio, has made "shatter[ing] stigma" one of the central objectives of his marquee behavioral-health initiative, "Thrive NYC." Kim Reynolds, the Republican governor of Iowa, signed a bill into law that she claimed would help "lift the veil of stigma associated with mental illness and [replace] it with hope, healing, and comfort of community." Members of Congress from both parties have denounced stigma, including Republican senator Roy Blunt from Missouri and Democratic senator Debbie Stabenow from Michigan. The federal Substance Abuse and Mental Health Services Administration (SAMHSA) is committed to fighting stigma under the Trump administration, just as it was under President Obama.

While stigma has long occupied the attention of government leaders, a series of mass shootings in recent years has forced mental-health policy to the forefront of public debate. When such incidents force politicians to "do something," taking on stigma is one of the safest routes. The public official who fails to denounce stigma risks being accused of accommodating intolerance. Fighting stigma is also easy on the budget, as funding billboards or subway ads criticizing stigma is exponentially cheaper than, say, staffing a psychiatric hospital with unionized nurses and security guards, or building supportive housing for mentally ill individuals.

Stigma also figures heavily in all the most important questions of mental-health policy. Many chapters of the National Alliance on Mental Illness have long objected to the Health Insurance Portability and Accountability Act (HIPAA) for restricting families' access to their mentally ill relatives' health records. Congress considered major reforms to HIPAA's privacy rules in debates over the Helping Families in Mental Health Crisis Act, a bill first introduced in the wake of the December 2012 mass shooting at an elementary school in Newtown, Connecticut. But while the bill was praised by many, a number of mental-health advocates argued against reducing privacy protections for mentally ill people, claiming that this would be unjustly discriminatory. They ultimately succeeded in watering down the proposed HIPAA reform, which became law in the 21st Century Cures Act passed in late 2016. In this version, the law merely directed the Department of Health and Human Services to issue clarifying guidance on the matter.

The HHS guidance currently permits health-care providers to "discuss an adult patient's mental health information with the patient's parents or other family members....[i]n situations where the patient is given the opportunity and does not object." As elaborated by the HHS Office for Civil Rights, this guarantees, for example, that "[a]n emergency room doctor may discuss a patient's treatment in front of the patient's friend if the patient asks that her friend come into the treatment room." But that same agency cautions that "[a] nurse may not discuss a patient's condition with the patient's brother after the patient has stated she does not want her family to know about her condition" (emphasis in the original).

The problem with HIPAA has always been that matters get murky about what families can know when providers don't have explicit consent from a patient to share information. In the hardest cases, consent is often not forthcoming. Mental illness has a tendency to complicate relations between family members, which helps explain why so many mentally ill people wind up homeless. Family caregivers would be best positioned to prevent decompensation if given clear access to information, and even the ability to coordinate care plans with providers outside the earshot of their mentally ill relative. However, families are now just as much in the dark about recent hospitalizations, adherence to medication regimens, and even suicide attempts, as they were before the 21st Century Cures Act was passed.

Anti-stigma attitudes pose yet another type of risk, as it is sensible to take into account a person's mental health when evaluating his fitness for certain responsibilities. Police are said to avoid using department-backed mental-health services for fear of placing their advancement at risk, much to the chagrin of anti-stigma advocates who believe they should be able to access treatment without fear of repercussions. But shouldn't we want police-department supervisors to be informed about patrol officers' psychiatric conditions? Similarly, in 1972, Missouri senator Thomas Eagleton was forced to step down as George McGovern's running mate due to revelations of his having received electroshock therapy. The "Eagleton Affair" is often invoked by mental-health advocates as an example of the benighted attitudes of the past. But holding high office is an enormously stressful experience, and stressful experiences can trigger and exacerbate mental illness. If it's acceptable to take into account someone's physical health when evaluating his fitness for office, then a history of mental illness should be fair game as well.

The centrality of stigma in debates over mental-health policy is closely connected to questions regarding mental-health exceptionalism, a key theme of Richard Frank and Sherry Glied's 2006 book, Better But Not Well: Mental Health Policy in the United States Since 1950. Over the course of generations, the way we manage and fund mental-health care has become less and less distinct from the way we manage and fund physical-health care. "Parity" regulations at both the state and federal levels require insurers to cover equal levels of both types of care, the argument being that to do otherwise would stigmatize mental-health disorders by treating them as less worthy of reimbursement. Oregon and Utah have passed laws allowing schoolchildren to take "mental-health days" as excused absences, arguing that subpar mental health is just as much of a hindrance to classroom performance as the flu. To treat mental health any differently from physical health would reinforce unwarranted, negative stigma.

DIFFERENCES IN KIND

This campaign against stigma is largely misbegotten, and risks conflating serious and mild mental-health conditions. "Serious mental illness" is a formal term used in government documentation to mean a "serious functional impairment, which substantially interferes with or limits one or more major life activities." Someone who is "functionally impaired," per the National Institute of Mental Health, can't hold down a job, maintain healthy relationships with friends and family, or meet the obligations of ordinary living. Though impairment, not diagnosis, is what determines a condition's "seriousness," in practice, certain diagnoses apply to most of those who are characterized as seriously mentally ill; these include schizophrenia, bipolar depression, and major depressive disorder.

Understanding the distinction between serious and mild mental disorders is essential for effective policymaking, particularly in regard to the appropriate distribution of public resources. A homeless person who gets placed in a permanent supportive-housing unit may stay there for the rest of his life. Thus, governments go to great lengths to ensure that resources of this type go only to the most severe cases. To that end, policymakers employ tools such as "vulnerability indexes," in which the severity of potential clients' mental illnesses is generally one of the most important variables. In addition to the strength of their claim on limited government resources, the seriously mentally ill sometimes need extraordinary interventions, such as involuntary commitment. We don't think about hospitalizing people who are simply irritable or anxious, but it would be negligent or even cruel not to consider it for someone in a state of florid psychosis.

Anti-stigma campaigns often studiously avoid parsing such distinctions. This is because they need to promote the notion that it's illogical to feel shame over a condition that is so commonplace. The National Institute of Mental Health estimates that around 19% of adults suffer from some disorder listed in the Diagnostic and Statistical Manual of Mental Disorders, but only around 5% suffer from a serious mental illness. The assumption that serious and mild mental-health problems are just more or less extreme versions of the same thing has motivated efforts to try to replicate successful public-health efforts from the past — the sanitation programs in the 19th and 20th centuries, for example, or the anti-smoking campaigns from the 20th and 21st centuries. Unlike the programs they seek to mimic, however, these efforts have largely failed in part because they are based on a faulty assumption and cast far too wide a net.

For one thing, diagnoses aside, the belief that all mild mental disorders are simply less severe versions of other disorders, or were caught early enough to be treated, is clearly false. Many individuals with mental-health challenges simply do not suffer from the kinds of significant impairment referred to in formal documentation regarding mental illness. It is also extremely challenging to detect severe mental illnesses early on. In his memoir about caring for his mentally ill son, journalist Pete Earley related the shocking abruptness with which his son succumbed to a psychotic breakdown, despite having had no known family history of psychosis nor any notable prior symptoms.

Allen Frances, the eminent psychiatrist and author, wrote the following in his wise polemic Saving Normal: "Great suffering would be avoided if only we could identify those at risk for schizophrenia and intervene early before they have experienced their first full-blown psychotic episode....But how do you find the needle in the haystack — the rare strange teenager who will go on to be psychotic from the many other strange teenagers who will grow up to be normal?" Mental illness cannot always be detected early. Disorders can differ as much in kind as in degree. And different types of disorders require different policy responses.

Opponents of stigma also insist that mentally ill people are not more violent or prone to serious criminality than the average person. This position has policy consequences affecting both the content in public-awareness campaigns and gun control. Restricting access to firearms for mentally ill individuals is enormously popular among the public, but such policies have faced roadblocks from those who object to singling out mentally ill people in this way.

There are two main problems with the attempt to sever all connection between mental illness and violence in the public imagination. First, only a highly selective review of social-science literature would support the notion that such a connection doesn't exist. Studies that purport to find no connection between violence and mental illness tend not to focus exclusively on the seriously mentally ill, or to exclude people in hospitals or prisons from surveys, or to focus on individuals who are in treatment. But the gap between untreated and treated serious mental illness can be as large as that between serious and mild mental illness; overcoming that gap is the top focus of mental-health policy, or should be. According to D. J. Jaffe, the executive director of Mental Illness Policy Org., any claim that mentally ill people receiving treatment for their disorders are not prone to violence should be seen as a testament to the value of treatment, not as an indication that there is no connection between mental illness and violence.

Second, with respect to the highly charged issue of mass shootings, studies by Mother Jones magazine and criminologists Grant Duwe and Michael Rocque have found a correlation between mass shooters and mental illness. The view that mentally ill individuals suffering from paranoia are dangerous is widely accepted by the public; it is based on press reports in which assailants are depicted as troubled individuals who slipped through the cracks. These stories, in which people failed to receive the treatment that everyone around them knew they needed, reveal the profound dysfunction of our mental-health system.

This dysfunction is rooted in part in the fragmentation of services and programs. At present, there is bipartisan agreement that mentally ill criminals, or at least many of them, deserve treatment, not punishment. This has led to a vast array of "diversion" or "alternative to incarceration" programs, which place mentally ill individuals who have been arrested for certain crimes in probation-style programs rather than jail. Many of these programs have been successful, such as the one run by county judge Steve Leifman in Miami-Dade, Florida, and are some of the most admired mental-health initiatives in the country. But anti-stigma advocates rarely face up to the full implications of the "treatment, not punishment" philosophy.

There is a contradiction in saying, on the one hand, that mental illness poses no threat whatsoever to society and, on the other hand, saying that someone under indictment deserves leniency for having committed a crime that can be attributed to a mental illness. If someone with diabetes committed a crime that merited incarceration, most people would agree that, during his time behind bars, he should receive treatment for that condition. But having diabetes would rightfully be seen as incidental to the act for which he's being punished, and so there would be no reason for special leniency when sorting out the charges against him. To say that a crime committed by someone with a mental illness should be evaluated differently from a crime committed by someone with diabetes is to concede that mental illness, at least when left untreated, can incline people toward criminal behavior.

Opponents of stigma tend to direct funding toward programs of questionable value, obscure meaningful differences between types of mental illness, gloss over the potentially dangerous repercussions of entirely equating mental and physical health, and send conflicting messages regarding the link between crime and mental illness. Clarifying the actual benefits of such programs, as well as the real problems faced by individuals with mental illness and those close to them, could help make mental-health policy more effective.

BARRIERS TO TREATMENT

As noted earlier, anti-stigma advocates support certain kinds of treatment for mentally ill individuals, but blame stigma for reducing access to such treatment. So to what extent is stigma a barrier to treatment? While many advocates point to stigma to explain government failures in handling issues such as homelessness and mental illness among prisoners, there are a variety of reasons why mentally ill people decline or discontinue treatment.

Some individuals with mental disorders enjoy their manic or psychotic episodes and even try to enhance the experience with street drugs. Some stop taking medication because they think they're cured and don't need it anymore. Some are philosophically opposed to psychiatric drugs (and some are convinced they are harmful thanks to radical "consumer-survivor" groups). Others simply don't wish to continue taking their medicine; virtually all anti-psychotic drugs have some undesirable side effects, such as weight gain, diminished sex drive, and risk of blood conditions. Still others don't get along with their assigned therapist, psychiatrist, or case manager. Some (perhaps as many as 40% to 50% of patients) have anosognosia, or lack of insight, meaning they don't accept that they're mentally ill. Collectively, these factors are much more significant in driving the challenge of untreated serious mental illness than is stigma.

It is tempting to blame stigma for poor mental-health outcomes, but the real culprit is the misallocation of resources. The failures of initiatives such as New York City's Thrive NYC program and California's Mental Health Services Act have become impossible to ignore. Thrive NYC includes dozens of discrete programs across 15 agencies and has cost the city nearly a billion dollars in its four years of operation. The program has faced sustained criticism from the press and city politicians, including a number of leading progressives, for neglecting the seriously mentally ill. In testimony before the city council, Chirlane McCray, New York City's first lady and the head of Thrive NYC, struggled to identify any concrete results the program had achieved. In addition to Thrive NYC, the city's health department spends around $300 million annually on the seriously mentally ill.

Meanwhile, California's 2004 Mental Health Services Act, enacted by voters for the purpose of taxing the wealthy to help the seriously mentally ill, has devoted billions of dollars to other purposes. Multiple reports by oversight agencies and the press have criticized the program for lax supervision and wasting funds on public-relations campaigns and mental-illness-prevention programs whose effectiveness is questionable at best.

Spending on mental-health services has risen nationwide; according to health economists Sherry Glied and Richard Frank, it rose more than seventyfold over the latter half of the 20th century. That period was also marked by rampant "diagnostic inflation," a problem that persists today. Only 106 mental disorders were identified in the first edition of the DSM in 1952. The current, fifth edition identifies 298. In the early 1980s, it was estimated that one-third of Americans would have a diagnosable mental disorder at some point during their lives; now that figure stands at one-half. The more mental disorders we identify, it seems, the greater the pressure for a costly policy response.

Diagnostic inflation has risen in large measure due to demands from stakeholders in the mental-health-care system, who have a vested interest in its increase. But public opinion has also played an enormous role: Progressives want to discredit the importance of personal responsibility; parents are hopeful that their child's emotional difficulty may admit of a medical solution; and conservatives are eager to play up signs of social dysfunction in the modern world. Many people may also wish to access social services that are available only with a formal diagnosis. Each of these cohorts has an interest in expanding diagnosis rates for mental disorders, and their demands are being met: The rate of mental-illness diagnoses among children, for example, rose by nearly 31% between 2011 and 2017.

This kind of diagnostic inflation has made the demand for mental-health resources practically limitless. Many conservatives accept the idea, articulated by Ronald Reagan, that "no one in this country should be denied medical care because of a lack of funds," even if they would prefer to attain that goal through different policy means than Obamacare or a European-style single-payer system. But a simplistic acceptance of government's responsibility to enable universal access to mental-health care risks turning a failure to flourish into a policy failure. Modern liberalism is founded on the idea of a public guarantee of the conditions for happiness (certainly property and safety, arguably physical health), but not of the attainment of happiness itself. In any case, the increased rates of diagnosis suggest that more, not fewer, people are seeking help, thus undermining the case that stigma is a substantial deterrent for people who wish to access mental-health services.

And while stigma may discourage those with mild mental disorders from seeking treatment, the government's responsibility to address this type of challenge is less clear than its responsibility to help those with serious mental illnesses. Mental-health problems that affect otherwise-functional people, such as mild anxiety or obsessive-compulsive disorders among corporate strivers, or depression among artists and writers, might even enhance their functioning. (The poet Rainer Maria Rilke declined psychoanalysis on the grounds that driving out his "devils" might also drive out his "angels.") In other words, it is not clear to what extent stigma acting as a barrier to treatment in mild cases is actually harmful, or to what extent the government ought to get involved.

The argument that stigma keeps the mentally ill unemployed and barred from safe neighborhoods is also worth examining. Much of what is ascribed to popular prejudice toward mentally ill individuals is hard to distinguish from the public's reasonable mistrust of the mental-health-care system. Take the "NIMBY" issue: Most people don't want to live next to a homeless shelter that cares for mentally ill people because they don't trust the government and shelter providers to run such facilities in a way that would keep neighborhood conditions stable. Who can blame them? At this point, the failings of de-institutionalization stretch back generations. So-called NIMBYs routinely draw the ire of newspaper editorialists, who somehow see no contradiction in, within the same thousand-word piece, denouncing community groups for their cold-heartedness and the mental-health-care system for its decades of failures.

It is also worth reflecting on some of the behaviors that are stigmatized and, to one degree or another, associated with serious mental illness: public urination, drug use, obscene shouting, and so on. While public-education campaigns against stigma attempt to instill the "right" principles in a given society, it is not clear that this message is entirely benign. After all, a stigma is a mark of shame. There is undeniable social benefit in stigmatizing erratic behavior in public places; few of us would enjoy living in a community where such behavior was encouraged and pervasive.

The goal of mental-health reform should be expanding access to effective treatment, especially for people with serious mental illness. Billboards and websites combating stigma tend to present smiling, healthy, accomplished people managing their disorders well; for example, the "Stop Stigma Sacramento" campaign website features cheerful photographs with captions such as "Mother. Dancer. Living with Depression." These do not inspire the kind of urgency that pictures of deranged-looking young men in handcuffs might elicit. Many mental-health advocates also celebrate positive portrayals of mentally ill people in movies such as the Silver Linings Playbook, while denouncing films like Psycho or The Silence of the Lambs, in which mentally ill people are depicted as paranoid, violent, or anti-social. The urgency needed for meaningful reform won't be achieved by minimizing severe cases and highlighting comparatively mild ones.

Not everyone recovers from serious mental illness. Some attain only partial recovery as the result of extraordinary and expensive interventions performed over many years, during which time success often seemed impossible. Positive portrayals of mentally ill people are misleading to the extent that they suggest recovery is easy and always within reach.

Anti-stigma campaigns also tend to obscure the fact that recovery sometimes requires inpatient psychiatric care. Concerns that de-institutionalization had gone too far emerged as early as the 1980s, prompted by the modern homelessness crisis. Yet since that time, the number of patients in public psychiatric hospitals has fallen by over two-thirds. Against the protestations of groups such as the Treatment Advocacy Center, states are still reducing their inpatient capacity.

The argument for de-institutionalization has long rested on the premise that community services are cheaper and more humane than psychiatric hospitals. But the extraordinarily high rate of mental illness among our incarcerated population, as well as the international disgraces that are San Francisco's Tenderloin and Los Angeles's Skid Row neighborhoods, all raise grave doubts about community-care models. We'll never return to the old asylum system, which, adjusted for population, would entail the confinement of over one million individuals. But the pendulum has swung too far the other way on inpatient care; indeed, it had probably swung too far 30 years ago. The notion that some people need involuntary commitment is hard to square with the notion that treating a serious mental illness is no different from treating a broken leg or heart condition.

The most vocal proponents of de-institutionalization, such as the late psychiatrist and academic Thomas Szasz, have gone so far as to liken the asylum system to chattel slavery in the old South. But government restrictions on racial minorities and the mentally ill had drastically different motivations. The asylum system, which lasted from the mid-19th century until the mid-20th century, was launched by some of the most dedicated mental-health advocates our nation has ever known, the most famous being Dorothea Dix. Outraged at how the mentally ill had been confined to poorhouses and jails early in the 19th century, these activists lobbied for new, custom-designed institutions that would provide "asylum" and "moral treatment" at public expense. The asylum system did not live up to its initial promise, but there was no Dorothea Dix equivalent arguing in favor of slavery or Jim Crow.

ANTI-ANTI-STIGMA

Certain tradeoffs would be necessary in pursuing policies based on an "anti-anti-stigma" stance. This approach entails opposing the mistreatment of mentally ill people while simultaneously acknowledging certain truths, including the link between violence and untreated serious mental illness, the meaningful differences between serious and mild mental illnesses, and the fact that inpatient psychiatric care is sometimes the best option for those suffering from serious mental illness. It also entails dismissing the idea that government has an urgent obligation to combat stigma.

To be sure, there are noxious forms of stigma; for example, "haunted" attractions staged in, or staged to look like, former psychiatric hospitals make light of the real suffering of individuals with mental illness. But there is a difference between opposing such entertainments and ascribing dark motives to those who'd prefer not to share a subway car with someone suffering from potentially violent hallucinations.

Today, stigma is more of a barrier to reform than a barrier to treatment. So long as this obsession with stigma persists, we'll never reform our HIPAA laws to give families more access to their loved one's medical information or succeed in increasing access to inpatient treatment for those whose lives depend on it. And while the public does hold misguided views on mental health, an effective public-education campaign against diagnostic inflation would yield far more meaningful benefits than one combating stigma.

We should also seek to restore our capacity for humane discrimination. Classical liberals such as John Stuart Mill and John Locke made a point of distinguishing between the rights and responsibilities of those in possession of their reason and those who are not. Schizophrenic individuals are, by and large, not like you and me. Insisting that they are flies in the face of simple observation and all manner of raw data on rates of employment, income levels, and participation in government-benefit programs.

In 2011, after Congresswoman Gabrielle Giffords was shot in the head by Jared Lee Loughner, a man with paranoid schizophrenia, a schizophrenic woman wrote the following message to President Obama: ‘‘I am very concerned about the problem in this country of the UNTREATED severely mentally ill population. When violent, they give the rest of us a bad name. I take that personally....Please see that this tragedy does not happen again.'' A system that did a better job connecting the seriously mentally ill with effective treatment would reduce popular prejudice against the mentally ill. Anti-stigma advocates put the cart before the horse by seeing the elimination of prejudice against the mentally ill as the cause of systematic mental-health-care reform rather than its effect.

This piece originally appeared at National Affairs

______________________

Stephen Eide is a senior fellow at the Manhattan Institute and contributing editor of City Journal.

Photo by coldsnowstorm/iStock

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