Thursday, July 29, 2010

Does the Language We Use Shape the Way We Think?

by Michael J. Fitzpatrick, Executive Director

“Thought is the blossom; language the bud; action the fruit behind it,” wrote Ralph Waldo Emerson.

Recently, the U.S. Substance Abuse and Mental Health Services Administration (SAMHSA) has been hosting a discussion about the best language to use when talking about people living with mental illness. NAMI is also in the process of developing the NAMI language guide for our leaders and affiliates so that we can be certain that we are doing all we can to support a real-life experience of mental illness. Notably, there is not a complete agreement on what words are the best. So that we can move forward with finding the best language, let’s examine the history of language as related to our movement.

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The civil rights movement objected to the word “colored,” which appeared on the signs that had denied some Americans equal access to restaurants and drinking fountains. Later, “African-American,” became the preferred term because it recognized this group of modern-day Americans as being products of the African. Were these words the cause of the changes that occurred in our society? Or were they the result of it?

One thing is for certain: as writer Casey Miller wrote, “All language reflects the prejudices of the society in which it evolved.” Thus we can look back at the era in which people living with mental illness were described as “patients” and see that—with few real treatments and little understanding of the biological nature of mental illness—all one could do was patiently wait for one’s symptoms to improve.

The word “consumer” grew out of the individuals’ recovery movement. It was chosen by many advocates because it implied an element of choice in the mental health services used by people living with mental illness. Interestingly, this is the term that produced the most negative reaction in most (but not all) of the respondents to the recent SAMHSA articles.

We object so strongly to some words because they point to realities we find objectionable. Language is the bridge between how we want to be thought of and what we want done about it.

Most of us can agree that we want people to understand mental illness as an illness like any other while also helping them understand the realities and the impact that mental illness has on us as individuals and as families. How does out language express both the challenges and the reality of our personal experience? What language can we use to get us there?

NAMI’s goal is to find transparent, inclusive language that will be the bridge between the idea and the reality of the world we want for people living with mental illness. This, along with SAMHSA’s efforts, will help us define the way America understands mental illness.

Tuesday, July 20, 2010

Irregularities in Brain Research at Columbia University: A Breach of Trust

by Michael J. Fitzpatrick, Executive Director

Late last week, The New York Times and The Los Angeles Times broke the news that the prestigious Kreitchman PET Center at Columbia University suspended some current research studies because of “sloppy practices” by researchers. The study under scrutiny involves brain imaging research of people living with mental illness and safety violations that could endanger these individuals.

This disregard for participant welfare is alarming, to say the least. Research is one of the central components of NAMI’s advocacy platform. Research will lead to better treatments and better quality of life for people living with mental illness and, we believe, a cure. It is appalling that after all the advocacy it has taken to promote much-needed research, it could founder upon shoddy practices that threaten the lives of individuals and the future of scientific investigation.

The entire enterprise of research is built upon “the trust implicit between research participants and investigators”—participants know that the treatments or tests may or may not help them directly but the results may help someone like them. The study participants at Columbia’s Kreitchman PET Center—which performs brain research on conditions like schizophrenia and major depression—were acting with the greater good in mind, yet some of these participants were exposed to inappropriately prepared radioactive compounds.

These irregularities were then covered up by “systematic forgeries condoned and approved by the lab director.”

The revelations about ongoing improprieties at the Kreitchman Center scandal suggest that answers must be sought in support of a thorough resolution, among them:

Did the Kreitchman Center’s IRB carry out their responsibilities to protect the best interests of research participants and were its members fully informed of safety concerns raised by the Food and Drug Administration (FDA) in its 2008 review?

Are researchers who have a personal stake in the outcomes of their own research capable of objectively carrying out quality control responsibilities? Shouldn’t quality control be the responsibility of those outside the research enterprise?

In addition to our concern about the safety of the individual research participants, NAMI worries that any family touched by mental illness now or in the future—potentially any family—will pay the price for the corners cut by short-sighted researchers. Investigation into the biological basis of mental illness has had profound implications for people living with conditions. Flawed practices and lack of trust may set back research and prevent important breakthroughs in understanding the nature of serious mental illness and identifying treatments that can foster recovery. This would be tragic indeed.

It is time for the research community, including regulatory agencies and researchers themselves, to step forward and develop and adhere to procedures and safeguards that will protect the interests of participants while allowing important outcomes to proceed and flourish.

Wednesday, July 14, 2010

Press Charges or Press for Change? The Criminalization of Mental Illness

by Michael J. Fitzpatrick, Executive Director
"I've heard family members say that the police told them, 'If you want treatment for this guy, press charges. This is the only way they'll get treatment.'"

One of the best things about getting together the NAMI community for a convention is that in the course of a conversation someone can share a story that gets right to the heart of the matter. Such was the case with the quote above from Dr. Robert Keisling, a psychiatrist with Pathways to Housing DC. He was part of one of several workshops dealing with one of the most difficult questions many of us will ever face—what to do when people don't want help? Or to put it another way, what would we want done for us when we are so sick that we don't feel we need help?

Assisted outpatient treatment (AOT) and mental health courts, two approaches for reaching people in the throes of a mental illness who do not believe they need treatment, are often divisive issues in our community. At a standing-room-only session about anosognosia (the condition when someone is sick but doesn't know that they're sick), AOT, and advanced directives, panelist Jonathan Stanley drew upon his 10 years of experience as a lawyer and advocate as well as his own journey with bipolar disorder. "I've been to Lansing, Mich., to Newark, N.J., and I've been to anosognosia—and I have no desire to return to any of them," he said of the year when his illness was at its worst. "At my most psychotic was when I was most sure I wasn't sick."

The problem is that the treatment system in America in many communities has failed.  The system that is meant to fix the people itself desperately needs to be fixed.

"Is this a mental health problem or a criminal justice problem? It will be handled one way or the other," noted Dr. Keisling in a subsequent workshop. A mental health system that leaves no recourse other than calling the police for a mental health crisis has been likened to "calling a plumber to fix a light bulb"— seeking the wrong expert for the problem. Crisis Intervention Teams or CIT has made great strides in educating the officers who are often the first line of defense for people in acute psychiatric distress. "In some areas 20 percent of 911 calls are about people with mentally illness," according to Keisling, who asserted, "It's really unfair to ask the criminal justice system to manage this problem because they're not trained to enforce compliance with treatment. The mental health system has fallen down on the job."

Other sources have reported family members, and individuals, turning to the criminal justice system to get their loved ones the help they didn't get through the mental health care system. "Some parents have resorted to filing criminal charges against their children in order to change out-of-control behaviors," the Child and Adolescent Bipolar Foundation confirms, cautioning, "once in the juvenile justice system, they are more likely to receive punishment than treatment."

No matter who answers that call for help, there is an obvious conflict about making it. Workshop participants who had been on the receiving end of help they didn't want said they were now thankful that someone intervened when they were very ill. Others have had experiences that drive them to take a strong stand in opposition to imposed treatment or interventions. NAMI community members who have been on either side of the issue—those who have resisted treatment while ill or who have tried to get a resistant family member help—what has been your experience? Have you been able to get help without entering the criminal justice system?

Read more about the criminal justice and mental health systems:

The many state budgets in crisis may be one factor leading to the criminal justice system picking up the pieces for an underfunded mental health system.

Fact Sheet: Mental Illnesses – Treatment Saves Money and Makes Sense (2007)
Crazy: A Father's Search Through America's Mental Health Madness by Peter Earley

Learn more about what is happening to address legal and law enforcement issues, including successful strategies, and register to receive NAMI's CIT In Action newsletter.