I haven't thought of Phoebe or Richard for years, but as I remember them now, it is with sadness. I didn't know much about any mental illness in those days. As I have learned more, and met more and more people, I have come to see the human struggles and triumphs, the courage and love and fear. I have come to see that all members of a family are touched by one member's illness, physical or mental. I have come to see how much injustice surrounds mental illness and how much of a human rights issue this is.
What is mental illness? That in itself is a subject of some debate. One might say it is a mental condition, disorder or syndrome with symptoms that cause significant distress and/or dysfunction. It disrupts one's thinking, feelings, mood, ability to relate to others and generally to function. According to this definition, the term mental illness encompasses the likes of schizophrenia, bipolar disorder, clinical depression, post-traumatic stress disorder, and obsessive-compulsive disorder to name a few. On the other hand, some argue that an over-pathologizing has occurred. At the start of the 20th century only a dozen conditions were named as mental health conditions. By 1952 there were 152 and today there are 374 listed in the Diagnostic and Statistical Manual of Mental Disorder, Fourth Edition. The result of increased knowledge, the result of a more stressful, yet aware society, and/or an increasing tendency to put a disease label on what deviates from the 'norm'?
What are the causes of mental illness? This too is a subject of debate. To some people, the concept of an 'illness' of the mind is often taken to mean there are no physical causes for that illness, while for others the term mental illness implies a medical condition with a specific physical pathology that causes the signs and symptoms. We are still in process of discovering the connections between the physical and the mental. The distinction of whether a physical cause exists or not has an effect upon societal attitudes, as we will look at more closely later. However most current schools of thought , including the biological, psychological and social, all of whom use the term 'mental illness', would most probably situate its causes in a bio-psychiatric point of view, that is, both physical and mental, both nature and nurture. Genetic, inheritable associations are becoming recognized as well, for example with schizophrenia and bipolar disorder.
Diagnosis of mental illness often requires an analysis of one's history plus one's symptoms: emotional, physical and behavioral. Conditions can wax and wane, symptoms can appear mild or severe at different times in one person's life. Mental illness affects many of us. According to the 2003 report of the U.S. President's New Freedom Commission on Mental Health, major mental illness is the most common cause of disability in the United States. Additionally, according to the National Alliance for the Mentally Ill (NAMI), 26% of North American adults will suffer from a clinically diagnosable mental health condition in a given year, but less than half of them will suffer symptoms severe enough to disrupt their daily functioning. Approximately 9% to 13% of children under the age of 18 experience serious emotional disturbance. Treatment of mental illness includes medication, psychotherapy, lifestyle support and sometimes alternative modalities. 70-90% of those treated experience a significant reduction of symptoms.
So why is there such a stigma surrounding mental illness? Why do so many still believe that mental illness reflects character weakness, lack of will power, bad parenting? Author Stephen Hinshaw, (The Years of Silence Are Past: My Father's Life With Bipolar Disorder and The Mark of Shame: Stigma of Mental Illness and an Agenda for Change), claims that public perception of mental illness is more negative today than it was fifty years ago. Why does mental illness still bear a mark of shame? Why do individuals and society as a whole label it, stereotype it, create an inferior class of people who have it and then discriminate against those people in a myriad of ways? (This is the description of stigma from the Mayo Foundation.) Fear? Human fear of what is different? Of what cannot easily be understood or controlled? Fear that it might happen to anyone, especially when the causes are not apparent? Fear kept alive by portrayals in the media, injustice in the health care industry, retribution in the prisons, neglect in the military, irresponsibility of government, discrimination in society?
I'm not immune to that fear. Are you? In 1991, our denomination required those preparing for the ministry to have a psychiatric evaluation. I had a lengthy exam with a psychiatrist which included a Rorshach test. When I went back to him for the results he reported positively but mentioned that I had times of depression. Huh? I had not thought of myself as depressed, nor had anyone else. Why did he say that? Because, he explained, I had seen steaks cooking on a charcoal grill for one of the ink blots. His words upset me. I feared that I wouldn't get through to ministry if he said I had times of depression to the denomination. He said he did not mean clinical depression, so maybe he would write I had periods of sadness, or down times. He eventually used the word sadness. I never heard anything about the report from the denomination, but I'm not immune to the stigma that attaches to mental illness. Are you? And yes, there have been times in my life when I went through a period of sadness, a down time, maybe even a depression.
Throughout western history people have both stigmatized and tried to understand and treat mental illness. The Greeks considered it possession but Hippocrates asserted it had natural origins. During the Middle Ages people thought the devil possessed those with mental illness, or accused them of being witches and spreading the infection. Yet at the same time in the Islamic world far more humane attitudes were held and treatment offered. During the Renaissance and in the following centuries, the mentally ill suffered horribly confined in asylums, in prisons or left homeless. Progress came in the 18th century as people began to understand the need for more compassionate care, although such an understanding did not materialize in substantial action. Dorothea Dix, a Unitarian, in the 19th century tirelessly exposed the awful conditions faced by many, especially poor, people with mental illness and by the 1880's a number of psychiatric hospitals opened. Conditions did not permanently improve though and throughout the 20th century people have had to remind society of this shameless injustice. Following WWII a move was made to de-institutionalize those with a mental illness. In part this movement recognized the terrible conditions in state hospitals and in part the rise in use of anti-psychotic drugs made this appear a superior alternative. However, inadequate preparations for release, inadequate resources devoted to helping people make the transition left many with no place to go, no way to manage their own care. During the 1980's all levels of government cut back on funding for social services. The homeless population exploded. The prison population grew. Institutional discrimination against those with a mental illness exists. It exists in the criminal justice system. 56% of inmates in state prisons and 45% in federal prisons have been found to have mental health problems. (New York Times, 9/7/06) Prisoners with such are also more likely to be incarcerated again, yet connecting such people with services to help them manage their illness once they leave prison is not yet a priority. While there is a growing recognition of the problems in the criminal justice system, as evidenced by a current lawsuit in Massachusetts which seeks to prevent the state from putting mentally ill inmates in segregated cells and a bill to the same effect in the New York legislature, although vetoed by Governor Pataki, the injustice persists. Last summer Florida circuit judges ordered then Governor Jeb Bush to obey state law and transfer seriously ill inmates to state mental hospitals. He had disregarded that law because few hospital beds were available. Which leads to the healthcare system. We have recently heard a great deal about the lack of treatment and the lack of funding for post-traumatic stress syndrome in military hospitals. There's so much more. Discrimination by insurance companies, refusal to pay for treatment, inadequate care facilities, underfunded research create havoc in the lives of people and fuel the myth that mental illness is lifelong and hopeless. This particularly affects the care given to, and sought by, the elderly. Fewer than half of the people who reported mental illness in 2005 sought treatment for it. This according to a government-funded study, (The National Co-morbidity Survey Replication). Many people of all ages fear stigma and discrimination on the job or in housing, or in child custody cases, or even obtaining a driver's license if they access the health care system in the first place. But then, when they do, the insurance companies await them. Since the 1990's HMO's have closely scrutinized what they judged the effectiveness of mental health care and put strict limits on it. In response Congress, in 1996, passed the Mental Health Parity Act requiring private health plans offering mental health coverage to set equal yearly and lifetime payment limits for coverage of both mental and physical illnesses.
Which leads to the government response. In general, state and federal governments could show a much stronger political will in promoting justice for people diagnosed with mental illness. Among the positive actions, in 1997 the US Equal Employment Opportunity Commission issued guidelines intended to prevent discrimination against people with mental illnesses in the workplace. They prohibit employers from asking job applicants if they have a history of mental illness and require employers to provide reasonable accommodations to workers with mental illness. Among the less positive, according to the New York Times, it costs New York taxpayers $25-30,000 annually per person to live in a non-profit group home while it costs taxpayers $40,000 annually per person to live in a for-profit home. Yet 30,000 people in New York State continue to live in for-profit homes. One third of those people have a mental illness. You do the math. Why has the state legislature not ensured that successful non-profit alternatives are financed and expanded? In addition, an estimated 20,000 New Yorkers with a mental illness have no home at all. What's the matter with us? Although we have inherited centuries-old erroneous and harmful attitudes toward mental illness, that does not justify or even explain current patterns of widespread discrimination.
Which leads to the media. The media both influences and reflects societal attitudes toward people with mental illness. Recent studies (George Gerbner, as reported in Wikipedia) have shown that portrayals of people with mental illness on TV are more often than not biased and inaccurate. 20% of people with mental illness on TV are shown as murderers, while 5% of people without mental illness are shown as murderers. 70% with mental illness are shown as violent vs 40% without mental illness. No scientific study bears out these percentages. None. People with mental illness are far more likely to be victims than victimizers.
Just last month Volkswagon withdrew a commercial called "Jumper" which depicted a man contemplating suicide until he learned about lower auto prices. General Motors agreed to stop running a commercial that presented a robot driven to suicide because he/she/it made a mistake on the assembly line. I don't think either manufacturer set out to offend. Rather, using suicide to entertain and sell cars reflects a thoughtless ignorance of the whole issue.. To be sure, the media also leads the way with more positive portrayals of mental illness. There are films like Girl, Interrupted, the story of a teen age girl who tries to commit suicide and her recovery and re-entry to her life; A Beautiful Mind, the story of brilliant mathematician John Forbes Nash ; books like Woman on the Edge of Time by Marge Piercy. In 2005 the TV show Monk won an award from the Substance Abuse and Mental Health Services Administration for its portrayal of a person managing his mental health condition. In the case of Monk, a detective with obsessive-compulsive disorder manages his life and solves cases that no one else can.
Such pervasive institutional and societal and personal discrimination against people with mental illness is a justice issue. It is a human rights issue. It is a religious issue, a UU issue, as it speaks to the inherent worth and dignity of each person and the interconnectedness we share. Think of the numbers of people involved: one in four adults in any given year shows symptoms of mental illness. Less than half seek treatment. Think of the effects on them, on their families, on their friends. Think of the isolation, secrecy, feelings of rejection, mental distress, suicide, unnecessary disability, loss of work and wages, unemployment, homelessness, substance abuse, incarceration. NAMI (National Alliance for the Mentally Ill) contends that the economic costs of untreated mental illness are $100 billion every year. Can we afford, morally and humanly, to throw away whole groups of people? This is wrong. What can we do? First we must examine ourselves and uncover our own attitudes, and stigmas if we have them. What labels and stereotypes live inside us? Are we among the 2/3 of American adults who, according to the Centers for Disease Control and Prevention, believe mistakenly that persons with mental illness cannot recover? Do we equate people with their illness? A diagnosis does not define a person.
Second we can reach beyond ourselves to develop an awareness of how mental illness is portrayed and spoken of around us. We can educate ourselves and others and help to correct misperceptions. We can offer our support and compassion to family members and friends with mental illness, or to ourselves if we have a mental illness. We can encourage people to seek treatment. Third we can become an advocate: supporting legislation to end discrimination in housing and employment; calling for better and more access to health care; working for prison reforms that will keep inmates with mental illness out of the solitary confinement boxes and offer treatment instead; holding the media accountable for what it says and does. Organizations like NAMI or the National Mental Health Association's Advocacy Network can get you started. Each of us deserves a meaningful, productive and fulfilling life. In his book The Mark of Shame Stephen Hinshaw writes, "A far brighter future can and will emerge when knowledge replaces ignorance, when effective treatments supplant custodial care and inadequate community intervention, when legislation mandates equality and when contact with the realities, rather than the stereotypes of mental disorder, taps people?'s empathy." Can we join those working to make these words a reality? Can we join those working to break the barriers erected by fear?
To paraphrase Martin Luther King, Jr. "We are caught in an inescapable network of mutuality, tied in a single garment of destiny. Injustice anywhere is a threat to justice everywhere." Therefore, "There are some things in our social system to which all of us ought to be maladjusted." May we take up this work for justice and thereby "hew out of the mountain of despair, a stone of hope." Let no one with mental illness have to remain silent. Let no one be without access to treatment. Let there be support for families and friends.. Let there be understanding and compassion for all. May it be so.