Remarks by
A. Kathryn Power, M.Ed.
Director
Center for Mental Health Services
Substance Abuse and Mental Health Services Administration
U.S. Department of Health and Human Services
First Meeting of SAMHSA’S National Anti-stigma Campaign Workgroup
Rockville, MD
April 25, 2005
PowerPoint version
Attached is the text prepared for delivery; however, some material may have been added or omitted at the time of delivery.
[SLIDE 1. Title slide]
Good morning. There are approximately 50 of us in this room. In any group of this size, at least a dozen individuals likely will belong to a family affected by mental illnesses. Mental illnesses are more common than cancer, more common than diabetes, and more common than heart disease.
[SLIDE 2. Illness Comparison]
Many Americans, however, reject the notion that they or someone they love might have a mental illness. They might deny the symptoms, or keep secret a diagnosis, or delay seeking treatment. Would they respond differently to a potentially serious physical illness? Of course they would! Most likely, they would run to their doctor’s door, seeking the latest in medical knowledge and treatment. We inherently accept that the sooner a physical illness is treated, the better our chances for recovery.
[SLIDE 3. Prevalence vs. help-seeking]
So what makes Americans react so differently to mental and physical illnesses? The majority of those with a diagnosable mental health problem, including those with serious mental disorders, do not to seek treatment. Why?
The answer is complex. Many individuals lack adequate knowledge about mental health problems. They may not recognize the symptoms or understand that their problems are treatable. As Mr. Curie noted, many don’t know where to turn for services and supports. Those who are aware of their disorder may avoid treatment for another reason—stigma and discrimination, the most pervasive barriers to treatment and to a person’s hope in recovery.
We have asked you here today to help identify ways that we can use public education to tear down the barriers of stigma and discrimination. Part of our discussion should focus on the language we use. Language is a powerful tool for shaping public opinion. This is why we fought and triumphed over the use of dehumanizing labels such as “schizophreniac” and why we now debate whether the term “mental illness” invokes a negative response.
I believe the term “stigma” is stigmatizing. Its use reaffirms a relationship between mental illnesses and fear, bias, ridicule, and shame. We are not here to perpetuate a self-fulfilling prophecy of chronic mental illness by focusing on negative attitudes. We are here to accomplish the exact opposite: to inspire Americans to think and act differently in regard to their mental health—to take their problems out of the closet and into the clinic. We can begin by changing how we ourselves think and talk about barriers to help-seeking behavior.
For thousands of years, individuals with mental health problems and their symptoms have been misunderstood, misdiagnosed, and mistreated. Even now, with all of our medical and theoretical advances, we still have so much to learn. Ancient Romans thought that too much exposure to the moon, especially the full moon, could affect the mind. Those allegedly affected by the moon’s influence were called “lunatics,” from “luna,” the Latin word for moon. Millions of children who have seen “Loony Tunes” cartoons probably are unaware that the title reflects a once-popular theory about mental illness.
Other historic—and equally misinformed―theories include being possessed by the devil or being a witch or because a person is weak or immoral. Each evolving theory has reinforced the false beliefs associated with mental health problems and the discrimination that follows.
Science, of course, has soundly disproved historic theories. Research continuously is expanding our knowledge about the mysteries of the mind and the ways in which it works. We now know that illnesses may result from a complex interaction of biological, developmental, environmental, and social factors. We know that there are risk factors that make some individuals more vulnerable to mental health problems and that there are protective factors that make others less vulnerable. We also know this: recovery from mental illnesses is a real possibility!
[SLIDE 4. Recovery definition]
By recovery, we mean a process or journey, sometimes lifelong, through which a person achieves independence, self-esteem, and a meaningful life in the community.
So again, I ask this question: Why is it that the majority of those with a diagnosable mental health problem do not seek treatment? The final report by the President’s New Freedom Commission on Mental Health, which is called Achieving the Promise: Transforming Mental Health Care in America, gives this reason: our mental health system is not focused on the single most important goal of the people it serves—the hope of recovery. As a result, too few Americans realize that mental illnesses are treatable and that recovery is possible.
Achieving the Promise recommends that we fundamentally transform our Nation’s approach to mental health care. The report calls for a mental health system that is consumer driven and focused on recovery. In this system, consumers and their families will be at the very center of care. They will have real and meaningful choices about treatment options and providers.
Enabling consumers to participate in their own care has tremendous implications for encouraging individuals to seek treatment. Research shows that having the opportunity to regain control of their own lives is vital to recovery by persons with mental health problems. Consumers often have excellent insight into what treatments work best for them or what supports would be most effective. As the old Chinese proverb says, “No one knows better how the shoe fits than the one who wears it.” When treatment plans are built on the knowledge and experiences of consumers, the result is better recovery and long-term outcomes.
[SLIDE 5. Goal 1 and its recommendations]
Achieving the Promise outlines 6 broad goals and 19 more specific recommendations for creating a consumer-driven system focused on recovery. The very first goal is that Americans will come to understand that mental health is essential to overall health. The very first recommendation for achieving this goal is to “advance and implement a national campaign to reduce the stigma of seeking mental health care.”
This meeting is a direct response to the report’s call for a public education campaign. Thank you for joining SAMHSA in answering this call, and welcome to the first meeting of the National Anti-Stigma Campaign Workgroup. You now are leaders in SAMHSA’s ongoing efforts to transform our national mental health system! Your role as workgroup members is to advise SAMHSA on research, strategies, and the direction for the campaign. Part of this charge is to look at the process of public education in changing attitudes and actions related to mental health. How can we move from providing the public with a basic understanding of mental health problems to encouraging individuals to seek treatment?
Before we proceed with today’s agenda, let’s clarify our goal and some of its implications. Our goal is to improve the public’s understanding of mental illnesses so that any person with a problem will seek treatment. To emphasize the importance of this goal, I’d like to quote from a book written by Patrick Corrigan, who will be speaking to us later this morning. We are extremely fortunate that Dr. Corrigan, who is an expert in this area, is with us today.
Dr. Corrigan is the author of Beat the Stigma and Discrimination! Four Lessons for Mental Health Advocates. He writes that
“Many of the problems confronting people with mental illness result from public misunderstanding about psychiatric disorders. At the most harmful levels, these misunderstandings rob people of rightful life opportunities. At more benign levels, they result in a failure to prioritize mental health issues in the political arena. In either case, the disparity between what is available and what is provided to people with mental illnesses is significant and motivates the advocate to change the existing state of affairs.”
Like Dr. Corrigan, we are here as advocates for change. Like him, we believe that the way to end disparity―to ensure that people have full and equal access to a range of treatments—is to change public perceptions about mental illnesses and recovery. We want anyone—regardless of their age, race, gender, sexual orientation, income level, or geographic location—to be able to seek help freely, willingly, and with hope in recovery.
In effect, we want to create a cycle of hope and recovery. When people believe that recovery is the common, recognized outcome of mental health services, more people will seek the services and supports that promote recovery. As more people recover, others will be encouraged to seek care. Stigma and discrimination will have no place in this cycle.
Stigma and discrimination have distinct meanings and consequences. Stigma is an attitude; discrimination is an action. Our campaign needs to incorporate strategies for overcoming both.
[SLIDE 6. Defining stigma]
Achieving the Promise defines “stigma” as “a cluster of negative attitudes and beliefs that motivate the general public to fear, reject, avoid, and discriminate against people with mental illnesses.” Many in our field speak of stigma as being a self-fulfilling prophecy. Individuals with mental illnesses or mental health problems often respond to stigma by internalizing negative public attitudes. They become so embarrassed or ashamed that they often conceal their symptoms. They decide not to seek treatment or services in the community. The consequence?—They greatly reduce their chances for recovery, which reinforces their shame and the myth that mental health problems are incurable.
[SLIDE 7. Model of self-fulfilling prophecy--stigma]
Internalized stigma is just as damaging to a person’s hope in recovery as the stigma assigned by others. This slide illustrates the process of stigma as a self-fulfilling prophecy. Our cultural expectations of an illness cause us to focus selectively on behaviors that reinforce our preconceived fears and stereotypes. We then adjust our own behavior accordingly. A negative reaction on our part creates a negative response on the part of the person with an illness. Thus, the person’s illness is defined by our expectations—and not by the person’s actual condition and potential for recovery.
Will Hall, cofounder of the consumer-advocacy Freedom Center in Massachusetts, speaks plainly about his own experiences with stigma following his diagnosis of schizophrenia. Mr. Hall confides that, “I was socialized into being a mental patient. I was encouraged to see myself as a broken invalid, and instead of my strengths, I focused on my weaknesses and vulnerabilities as evidence of being a defective human being.”
Recovery from a mental health problem hinges on a person’s ability to reject guilt and shame—to be able to seek help in the community and to conceive of a future that is defined by hope and not by an illness. Mr. Hall attributes his eventual recovery to his successful efforts to transform his own set of expectations. He declared, “I stopped believing that I should never trust my own emotions and thoughts because they were corrupted by illness. . . . I stopped doubting my spirituality, my creativity, and my sensitivity. I stopped believing that recovery was impossible.”
[SLIDE 8. Model of self-fulfilling prophecy―recovery]
We need to turn this model on its head. By using our campaign to change cultural as well as personal expectations, we can create an entirely different self-fulfilling prophecy―one that is based on recovery. The first step is to break down the biggest barrier to recovery, which is d iscrimination.
[SLIDE 9. Discrimination definition]
Discrimination is prejudicial treatment. Specifically, it is actions or policies that undermine the welfare of a particular group. Discrimination against individuals with mental illnesses takes many forms. Employers who refuse to hire persons with a history of mental illness, landlords who exclude them, doctors who dictate a consumer’s treatment plan, legislators who block mental health care parity—these are people practicing discrimination.
And how widespread is discrimination? Consider the evidence:
[SLIDE 10. Evidence of discrimination]
- Only about one in three persons with a serious mental illness is employed—the lowest rate of employment for any group with a disability.
- Thousands of persons are homeless, unable to afford adequate housing or to access the services and supports associated with a stable address.
[SLIDE 11. More evidence of discrimination]
- Thousands of families have given up custody of their children in exchange for mental health care. I’ll use a finding from a recent report by the Virginia General Assembly as an example. Almost one out of four children in Virginia’s foster care system is there because parents want their children to have access to mental health treatment that is otherwise unavailable or unaffordable.
- And, finally, there is social isolation. Thirty-eight percent of Americans are unwilling to be friends with a person experiencing mental difficulties.
This last symptom of discrimination truly is tragic. There is a wealth of evidence that suggests that strong social networks contribute to recovery while social isolation is a major risk factor for relapse. In addition, research shows that the most effective way to reduce ignorance, fear, and discrimination is through personal contact with someone with a mental illness.
Think back to a key concept expressed in Dr. Corrigan’s handbook—that the most harmful outcome of public misunderstanding is to rob people with mental health problems of their rightful life opportunities.
[SLIDE 12. Consequences of discrimination]
Taking away their opportunities for jobs, or adequate housing, or meaningful relationships with family and friends robs individuals of the very services and supports they need. It denies them their hope in recovery and it denies them the promise of a full life in the community.
But we have an opportunity here. Our National Anti-Stigma Campaign is an opportunity to transform the way Americans think about mental illness and recovery. I sincerely believe that Americans are ready for change!
Last year, Californians voted a 1 percent tax on personal income above 1 million dollars. The money raised will be used to expand mental health services and programs throughout the State.
Last month, the Governor of Washington State signed a bill requiring insurers to fund mental health care at the same level as physical health care. In signing the bill, Governor Gregoire called it a great leap forward in the health of Washingtonians. She observed that “When we fail to treat mental illnesses in the same way we treat illnesses of the body, it costs everybody.” As we in this room know, the costs of untreated mental health problems are not just monetary. When untreated mental difficulties prevent individuals from achieving their potential, we lose the full contributions they could have made to the families, their communities, and our Nation.
The two State initiatives I mentioned are transformation in action. For these legislative initiatives to pass, the majority of the citizens in California and Washington State had to back them. We can see the barriers of stigma and discrimination beginning to crumble as more Americans move closer to understanding, and acting upon, two basic facts. The first is that mental health is essential to overall health. The second is that mental health is everyone’s concern.
The time is ripe to change the way Americans view mental health as well as mental illness. When people have a better understanding of the facts, knowledge will replace ignorance, compassion will replace fear, and help-seeking behavior will replace denial and shame. This transformation will largely be a matter of public education. But, as Nelson Mandela observed, “Education is the most powerful weapon which you can use to change the world.”
[SLIDE 13. Mandela quote]
Let’s use the National Anti-Stigma Campaign to increase public awareness about the effectiveness of mental health services. Let’s encourage individuals with mental health problems to seek the care they need and deserve to achieve recovery. Let’s give recovery a face! Forty-four million Americans have a diagnosable mental health problem. They are our coworkers, our neighbors, and our families. They are us. For the health and well-being of all Americans, let’s tear down the barriers of stigma and discrimination and, in their place, build hope.
Thank you.
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