Rep. Tim Murphy (R-PA), who is both a psychologist  and member of Congress, is keeping his promise to continue shining a much needed spotlight on our nation’s problem-plagued mental health care system.  Late last week, Rep.  Diana DeGette (D-Co.),  joined him in asking the General Accountability Office to investigate how the U.S.  government delivers mental health services to the public and whether the Substance Abuse and Mental Health Services Administration (SAMHSA) is doing a responsible job in allocating the $3.6 billion each year that it spends.

Reps. Murphy and DeGette deserve big KUDOS for continuing to make mental health reform a priority — especially since their counterparts in the Senate and other members of the House appear to have put mental health on a back burner while they chase after more recent scandals (IRS and privacy concerns) that are more likely to get them on the national news.

Have they forgotten Sandy Hook and all of the promises that were made about improving our  mental health system?

Rep. Murphy chairs the Energy and Commerce Oversight and Investigations subcommittee and Rep. DeGette is its ranking Democrat member. Under their bipartisan leadership, the subcommittee already has held a public forum and two hearings about mental health care — all prompted by the Newtown shootings.  The same question was asked at each hearing. Is the federal government meeting the needs of the sickest of the sick?

The answer has been and continues to be an loud NO.

I testified at the subcommitee’s first forum, along with Pat Milam, about roadblocks parents face when trying to get decent mental health care for their loved ones. The subcommittee’s second hearing examined how federal privacy laws (HIPAA) actually have harmed patient care and public safety, and the third subcommittee hearing investigated SAMHSA, which is the federal government’s main deliverer of mental health care programs.

Dr. E. Fuller Torrey, a long time SAMHSA critic, lead the charge at the third hearing by documenting how SAMHSA focuses on curbing drug and alcohol abuse more than it does on delivering mental health care services. The money that SAMHSA does spend often goes for programs that are not aimed at helping the serious mentally ill. At the hearing, Rep. Murphy warned a clearly unprepared Pamela Hyde, SAMHSA’s director, that his subcommittee intended to continue digging into her agency’s practices. She appeared to be completely unconcerned.

Perhaps now that the subcommittee is sending in GAO watchdogs, she will pay attention.

The subcommittee has send the GAO two requests. In the first, it asks if the different government agencies that deal with mental health care are  sharing information and coordinating their efforts to help  “individuals with serious mental illnesses.” SMIs, as they are known, include bipolar disorder, severe depression and schizophrenia.

The subcommittee’s second request asks the GAO to determine how much of the $1 billion that is being dispensed by SAMHSA for mental health care actually is spent to help the seriously mentally ill.

Getting the GAO to investigate and expose problems in the federal system will generate useful headlines which sould alarm the public. With continued prodding from members of the subcommittee, improvements might actually be made.

Let’s hope so.

Courtesy of Adrian Raine

Several years ago, I attended a lunch discussion with the Nobel Prize winner, Eric Kandel, where we had a lively discussion about whether someone could be born missing a part of their brain that tells them the difference between right and wrong. Dr. Kandel predicted the use of brain scans would become commonplace in courtrooms in the future. They would be used by defense attorneys to explain violence.

I don’t like to reprint articles here but this Op Ed piece in The Washington Post is well worth your time.

Can Brain Scans Explain Crime?

By Adrian Raine and Sally Satel, Published: June 7 in The Washington Post.

University of Pennsylvania neuroscientist Adrian Raine, author of “The Anatomy of Violence,” believes that advances in brain imagery are helping to explain the biological roots of crime. American Enterprise Institute scholar and psychiatrist Sally Satel, co-author of “Brainwashed,” is wary of the seduction of brain scans. The Washington Post brought them together for a conversation about the promises and pitfalls of brain imagery. An abridged version of that conversation follows.

Outlook: Adrian, could you start us off with one of the images from your work? Tell us what we’re seeing and what some of your research suggests.

Adrian Raine: One that strikes me is Donta Page, who robbed, raped and killed a young woman in Denver in 1999. I was an expert witness in that case. Compared to normal controls, brain scans revealed he had a distinct lack of activation in the ventral prefrontal cortex: the region that helps regulate our emotions and control our impulses.

He was also brought up in a horrible environment, neglected and physically and sexually abused. He was thrown out a car window when he was just 9 months old and suffered multiple head injuries as a child. He also had a family history of mental illness. He was referred 19 times for psychological treatment, but he never once got a treatment session.

So the key conceptual point is bio-social: Combine the brain with the social environment, and you have a predisposition for violence and crime that should be taken into account. [A three-judge panel gave Page a life sentence rather than the death penalty.]

Outlook: Sally, talk about some of your concerns about brain imaging and how it’s used. You’ve written, “Naive media, slick neuroentrepreneurs, and even an occasional overzealous neuroscientist exaggerate the capacity of scans to reveal the contents of our minds, exalt brain physiology as inherently the most valuable level of explanation for understanding behavior, and rush to apply underdeveloped, if dazzling, science for commercial and forensic use.”

Sally Satel: Neurocentrism, as [my co-author Scott Lilienfeld and I] define it, is the notion that explanations that reside at the level of the brain are inevitably the most informative, authentic, truthful explanations of complex behavior. Brain imaging can inadvertently, if it’s not interpreted correctly, or if it’s positioned in a tendentious way, feed into that [bias], because you have this stunning biological portraiture. Things appear to be lit up.

That’s really not how the brain works. It’s always on, it’s always firing — some circuits are going to be more active at any one time than another, but [neural activity] is highly distributed and not static.

Many people think that if [there is activity] in the brain, whatever behavior flows from it is involuntary. Sometimes that is the case, but you cannot draw that inference just from looking at a brain scan.

There’s also a lot of misapplication, a lot of premature application of underdeveloped science. Using [brain imaging] in the service of lie detection is one. It doesn’t mean we won’t get much better to the point where it may well be informative. But it’s not there yet, and there’s a lot of pseudo-neuroscience out there.

Outlook: The Supreme Court ruled this past week that police can take DNA samples from people arrested in connection with serious crimes. How about brain imagery? What role do you see brain scans playing in law enforcement and criminal justice, now or in the future?

Raine: Not now, but there’s potential for the future in the area of probation and parole decisions: Do we keep someone in prison, do we let them out early, are they a risk to society? Those decisions are made every day by judges, by [probation officers]. In California, it’s based on 20 indicators — social and behavioral indicators. Question is: Can these assessments be more accurate?

Two new studies have come out — one that I’m linked to and one by another group — that show brain-scan data can give added value to social and behavioral predictors of future offending. One study, this was [University of New Mexico psychologist] Kent Kiehl’s group, showed that individuals with lower levels of anterior cingulate functioning are twice as likely to reconvict after release from prison. The study I was involved in showed that individuals with reduced volumes of the amygdala were three times more likely to commit an offense in the three-year period post-release. Now, caution here, these are just two studies. But if there’s replication and extension, then there’s some potential for better decisions to be made.

Satel: I’m looking at the study you’re referring to with Kent Kiehl, and while it was a well-done study, they found what’s to me an unacceptable number of false positives and false negatives: 40 percent of people who they thought would reoffend based on reduced activity in the anterior cingulate cortex did not reoffend, and almost 50 percent of the people who they didn’t expect to offend based on the activity in that one area did offend. So that’s a not a lot better than chance.

Raine:I would say even if you statistically raise the prediction a little bit, that’s got to be better than nothing.

I think brain imaging and other neurobiology can also be used in mitigation in capital cases. If you’re against the death penalty, well, you’re in search of anything that can be thrown into that situation. Neuroscience has something to add in the penalty phase of capital cases.

Outlook: If there is some biological basis for violence, what does that do to concepts of moral responsibility?

Raine: I would say it gives us more humanity. We need to understand behavior more. It will never be a full explanation. But just as with witches — we used to burn them. Once we find out more about the etiology and causes of behavior, it gives us a more benign and humane perspective.

I talk about the case of Michael, who was a 40-year-old man, married. And then he began to develop a sexual interest in his prepubescent stepdaughter. Michael was found guilty of child molestation and diagnosed with pedophilia. The night before his prison sentence, he went to hospital complaining of a headache. An astute neurologist brain-scanned him and found a tumor growing from the base of the orbital frontal cortex — a part of the brain very critical for emotional regulation. They resected the tumor, and Michael was completely normal. He successfully completed a [therapy] program and then went back home to live with his wife and stepdaughter. Sort of a happily ever after. But then the headaches came back. He began to develop interest in child pornography again. The tumor had grown back. They resected this tumor for the second time, and for six years after that, to our knowledge, Michael’s been quite normal. It’s as close as you can get to causality.

Satel: I’m all for humanity. But the case of the pedophile: That is an amazing case. However, one wonders how many of those there are.

Raine: Or take head injury: It changes behavior.

Satel: Yes, but anything dramatic like that I don’t think people question so much. My point about the pedophilia case is that the night he [went to the hospital], at one point he was afraid that if he were released he might rape his landlady.

Raine: Yes, knowledge and forethought.

Satel: This man’s moral sense was intact enough for him to stop it. And that’s always interested me because of so many of these cases where people claim that they couldn’t control themselves. All you know is that they didn’t control themselves. Our science is not good enough yet to tell us when they truly couldn’t control themselves.

Raine: I think there are degrees of self-control. You know what Michael said? I’ll try and use his exact words. He said: “There was a little voice in the back of my head saying, ‘You shouldn’t do this.’ But there was a much bigger voice in the front of my head saying, ‘Go on, why not?’ ” So he did have a sense. He knew what he was doing, and he knew that what he was doing was wrong. That’s why, when I put that case to judges, 90 percent of judges will say Michael is responsible for his behavior, because he fits the legal definition as it stands.

In the future, what about partial responsibility? Not just based on brain-imaging data, but on all data combined. You know, you’re either responsible or not responsible: I don’t buy into that. I think there are shades of gray. And I think that there’s a future potential for a change in the justice system in terms of bringing the concept of partial responsibility into the guilt phase of a trial.

I’m thrilled to announce that Diane Kratt, Joe and Elizabeth Meyer and Greg Arms will be writing blogs for us about the National Alliance on Mental Illness convention. More than a dozen of you answered my request for correspondents to cover NAMI’s convention on June 27th to 30th in San Antonio, Texas. Thanks so much.

Diane Kratt is a native of  Fort Myers, Florida and has worked as an educator for the past 25 years, most recently as an instructor in the College of Education at Florida Gulf Coast University and as the coordinator of the Level 1 Student

Diane Kratt

Teaching experience. She is married to Jim and has a blended family with three sons. She became involved in NAMI seven years ago through its Family to Family class. Not long after that, she became a board member for NAMI Lee County. She has served the board as secretary and is currently the president.  Her passion for education and mental health has put her on the path to increase mental health awareness and services in the schools. She established a Children’s Mental Health Conference for the university which is currently planning its 3^rd annual event.  Diane is working to further the training of pre-service teachers in the area of mental health and hopes to contribute quality research to the field as she pursues her doctorate degree.

Joseph and Elizabeth Meyer live in Austin, Texas. Joe is an employee at Texas State University and Beth is a former human resources professional who stays home to care for their children. Joe wrote, “Our interest in the NAMI Convention is strongly related to experiences as the adoptive parents of a child who was diagnosed with bipolar disorder type-I with psychotic features when he was 7 years old.  Our perspectives on issues like parenting, nature, nurture, morality, dogma, criminal justice, and homelessness have changed dramatically as a result of what we’ve seen.

Joe and Beth Myer

Mostly, we’re a lot less certain and a lot less judgmental about everything!”  In an effort to educate young people about the complexities associated with the problem of mental illness in our country, Joe is organizing a Common Experience program called ‘Minds Matter: Exploring Mental Health and Illness’ at Texas State University that will offer an academic year of presentations, discussions, and workshops on the topic of mental illness.  This program and the work that has gone into organizing it are the topics of a poster presentation at the NAMI Convention.  A webpage with more information about the Common Experience topic can be found at www.txstate.edu/commonexperience and a Facebook page is available at www.facebook.com/MentalHealthandIllness.

Greg Arms is a 41 year old single dad to two daughters, ages 15 and 8. He has bipolar type 1 rapid cycle. Greg earned his undergraduate degree in addictions counseling at Regent University, and a Master’s Degree in  psychology from Walden.  He is currently working on a dissertation that he is writing to complete the requirements for a PhD in clinical psychology. He lives in  Blacksburg, Virginia and is a disabled veteran of the Army.

 

 

I am looking forward to all of their reports. If you see them at the convention, please say hello!

 

 

 

Picture left: Greg Arms

My friend and long-time National Alliance on Mental Illness advocate, Joanne Kelly, attended the White House summit and felt that my criticism this week was much too harsh. She kindly offered to share her views and specifics about what the conference accomplished. Thank you Joanne!

Obama: You are not alone. Recovery is possible. There is hope.

By Joanne Kelly

President Obama opened Monday’s National Conference on Mental Health with inspiring words for people with mental illnesses and their families. “Let people who are struggling in silence know: You are not alone. Recovery is possible. There is hope.”

He convinced me he understands the stigma problem. I am also convinced his words were not empty platitudes. He intends to do something about it, and the conference was a first step. A baby step, perhaps, but a step in the right direction.

The conference brought together people from across the country, including mental health advocates, educators, health care providers, faith leaders, government officials, and individuals with mental health problems, to discuss how we can work together to reduce stigma and help the millions of Americans with mental health challenges recognize the importance of reaching out for assistance.

Before the administration issued the final conference invitations, potential invitees were asked what they would do to launch or facilitate a national conversation about stigma. This was a brilliant move. We couldn’t just attend the conference and go home feeling smug. We had to figure out how we could be part of the solution.

The Interfaith Network on Mental Illness is committed to three things:

· Develop and implement a national online database of organizations that are operating at the intersection of faith/spirituality/religion and mental health. The database will make it easier for groups to find each other, collaborate and share best practices.

· Deliver a webcast on what we have learned in our efforts to mobilize faith communities in our county to deal more effectively with stigma. Communities that are considering launching similar efforts can learn from our experience.

· Add three clergy-focused videos on suicide prevention to our Caring Clergy website to give faith-community leaders nationwide a quick way to educate themselves when the need arises.

A conference fact sheet lists commitments made by other participating organizations. For example, the YMCA is educating its camp counselors to recognize signs of mental health problems in campers. The National Association of Broadcasters is planning a national public service campaign to convince young people it’s okay to talk about mental health and help is available. The United Church of Christ is planning a Mental Health Awareness Sunday in October with the theme “Widen the Welcome: UCC for Mental Health” that will be rolled out at UCC churches nationwide.

Besides holding conferences, what is the current administration doing for mental health? It is investing in brain research and doing more for veterans returning home with traumatic brain injuries and PTSD. But probably its most significant contribution is the implementation of the Affordable Care Act, which expands mental health and substance abuse disorder treatment to an estimated 60,000 people. Starting next year, insurance companies won’t be able to deny people coverage because of pre-existing mental health conditions. The administration also launched a new website, www.mentalhealth.gov, with tools for encouraging conversations about stigma.

I felt honored and privileged to attend the conference. I have read a couple of commentaries that were critical of the conference because it did not address the right issues. While  I understand those criticisms and don’t necessarily disagree with some of the points, I would rather give the administration kudos for doing something positive for mental health and continue to encourage them to address some of the structural problems in this country that make recovery difficult for those with the most severe and persistent mental illnesses.

Let’s continue to work together to take small steps in the right direction.

Joanne Kelly

Interfaith Network on Mental Illness

Co-founder and board treasurer

I’m grateful to the Rev. Alan Johnson for writing yesterday about the White House summit on mental health. As you might imagine, I have a different take, as I explained in an editorial that USA TODAY posted online yesterday.

President Obama deserves credit for hosting a White House summit on mental health on Monday, but the White House forgot to invite the people who arguably deal daily with more mentally ill persons than anyone else.

No police officers, sheriff’s deputies, correctional officers, probation officers or judges spoke at the summit. No high ranking Justice Department official attended. Nor was there any detailed mention by the president or his hand-picked speakers about the recent mass murders committed by young men with diagnosed mental disorders in Newtown, Conn., Aurora, Colo., and Tucson or on the Virginia Tech campus.

Given that the summit was prompted by last December’s Sandy Hook Elementary School mass shooting, the aversion by the White House to actually discuss that shooting is disheartening.

By the federal government’s own admission, more than 360,000 individuals with severe mental illnesses, such as schizophrenia and bipolar disorder, are currently incarcerated in American jails and prisons. More than a half million are on probation. More than a million go through our criminal justice system each year. The largest public mental facility in our nation is — not a treatment center — it is reputably the Los Angeles County jail.

How could the White House ignore these troubling statistics at a mental health summit or the frightening reality that our jails and prisons are today’s de facto mental asylums? How could law enforcement and criminal justice officials be excluded from conversations about how to reform our mental health care system? How could a presidential summit be held without anyone talking in detail about the mass killings that made it necessary?

Instead of addressing these unpleasant issues, President Obama spoke about the need to stop stigmatizing persons with mental illnesses, noting that 60% of Americans with mental illnesses do not receive treatment, often because they are embarrassed or afraid of being ostracized.

As the father of an adult son with a severe mental illness, I have witnessed first-hand how painful stigma has made his life. I’m also aware that it wasn’t embarrassment or stigma that kept him from getting help.

When my son became psychotic, I rushed him to a hospital emergency room in Fairfax County, Va., but was turned away because my son was not considered sick enough. Even though he had been diagnosed with a serious mental illness a year earlier, wasn’t taking his medication, and was talking about suicide, I was told there was nothing I could do until he actually hurt himself, someone else or me. Forty-eight hours later, he broke into an unoccupied house to take a bubble bath, was arrested and charged with two felonies.

Those felonies increased the stigma against him a hundred-fold.

The legal obstacles that I faced are not unique. There were abundant warning signs before the mass killings on the Virginia Tech campus and in Tucson, but parents and college officials felt their hands were tied by current laws.

A House investigative subcommittee, chaired by Rep. Tim Murphy, R-Pa., has held three recent hearingsto examine mental illness and violence post-Newtown. As President Obama did in his summit remarks, subcommittee members have emphasized that a majority of persons with mental illnesses are not violent and that persons with mental disorders are more likely to be victims of violence rather than perpetrators. Rep. Murphy’s subcommittee, however, has not ignored the elephant in the room.

I testified at the subcommittee’s first hearing, which examined reasons families can’t get decent mental health care. Another witness described how his son slashed his own throat, dug a grave in the backyard and showed friends nooses that he’d made to hang himself, yet his parents’ pleas went unheeded as soon as the family’s insurance company refused to pay for additional days in a hospital. Discharged, their son killed himself. A second subcommittee hearing examined how the Health Insurance Portability and Accountability Act tragically kept psychiatrists from warning parents that their son was suicidal.

Last month, Murphy’s subcommittee exposed how the Substance Abuse and Mental Health Services Administration (SAMHSA), our government’s leading agency charged with addressing mental health problems, ignores serious mental illnesses in favor of more popular substance abuse programs.

SAMHSA’s three-year plan defining its priorities – a 41,804 word document – doesn’t even mention the words schizophrenia, bipolar disorder, our nation’s two most serious mental illnesses. The $3.5 billionagency has only one psychiatrist on its 574 staff and his expertise is substance abuse, not mental illness.

Meanwhile, SAMHSA spent $80,000 on a musical that featured dancers singing the song, Red Red Wine, to warn its own employees about the dangers of substance and alcohol abuse.

I’m grateful that President Obama is using the White House to shine a spotlight on mental health, but the best way to reduce stigma is not by ignoring discussions about violence committed by a few or ignoring our sons and daughters who are incarcerated for committing crimes linked to their illnesses.

Glenn Close was one of the celebrity advocates invited to The White House

My friend, the Rev. Alan Johnson, was one of the 150 guests invited to the White House’s summit on mental health yesterday.  Here is his report. Thanks Alan for being our eyes and ears!

Are you listening, America?  The White House is talking!

Who would have thought that over 150 people from across our country who are working in the trenches for better mental health would be invited to a whole day in the White House?  But it happened! The White House brought together mental health advocates, educators, faith leaders, veterans and local officials for The White House Conference on Mental Health.

President Obama was the first one to speak to us at the conference, and he empathetically stated that we must “do a better job recognizing mental health issues in our children, and making it easier for Americans of all ages to seek help.” The President was not only speaking to those of us gathered, but to the whole country,where the overwhelming stigma on mental illness blocks people from even acknowledging there is mental illness and keeps them from seeking help.  In this climate of embarrassment and fear, the President acknowledged there needs to be education to overcome the misunderstanding of mental illness and support to come out of the closet to speak with authentic stories of one’s own mental health challenges.

The stirring words of President Obama concluded with his clarion call that we can do something.  To all who are living with a mental health challenge and their families, he said, “You are not alone.  There is hope.  There is possibility.  We are here for you.” The President’s words affirmed all of us who are focusing energy and resources to find the very best ways to offer mental health services.  Too often the persons who need these resources are isolated and caught in a murky cloud of helplessness.

The President said, “The main goal of this conference is not to start a conversation – so many of you have spent decades waging long and lonely battles to be heard. Instead it’s about elevating that conversation to a national level and bringing mental illness out of the shadows.”  The White House is gently yet fervently encouraging the nation to put mental health front and center. By hosting the Conference, the White House has begun a national network of mental health advocates.Hopefully the network will create solidarity among these varied groups so that we can learn from each other and share resources, strategies and support, so that people living with mental illness may be better served.

During the day, we heard from Health and Human Services Secretary, Kathleen Sebelius; Secretary of Education, Arne Duncan; and the Secretary of Veterans Affairs, Eric Shinseki, as well as from several others, each one adding their own perspective and commitment. Vice President Biden also spoke, closing the conference with words of encouragement. “There is nothing, nothing to be ashamed of, “ he said. “If you are struggling with mental issues, or if your child is, or your spouse, or your friend, it’s okay. It’s okay to talk about it; it’s okay to ask for help.”

Personally, I was privileged to be present at the Conference as a representative of the United Church of Christ Mental Health Network.  I appreciated that our work was acknowledged even by being invited to attend the Conference, and it was uplifting to see and meet some of those who are in those trenches energetically pursuing recovery and wellness.   We don’t often see each other across the country since our trenches are a bit deep, but when we come together we can see that there is much that is being done that is healing and hopeful.

I was disappointed that there was no one on a panel who was representing a faith community, since we know that 40%-90% of those who have a mental health challenge turn to their faith leaders before seeking out anyone else. As someone who offers spiritual support to those with mental health challenges, I can attest to the truth that faith and spiritual practice can be   resources for hope.They are not the only tools, but they are important ones in the toolbox of recovery. As a member of a faith community, I invite my colleagues across the country to turn your attention to this national dialogue and at least begin with the new website, http://www.mentalhealth.gov, and then explore what your faith community can doto be a participant in this dialogue.

My second disappointment in the Conference was that there was absolutely no mention of the enormity of the number of persons who are in our country’s jails and prisons who are receiving little or no mental health services.  As Pete Earley has brought to our attention in his book Crazy: A Father’s Search America’s Mental Health Madness, “The Los Angles jail is the largest mental hospital in our country.”  It was disappointing that the Conference could not address these two concerns and many other issues as well. However, at least the conversation has been launched on a national level.  I appreciate that the White House is speaking, and while we are listening as we continue to work, I hope that the White House can listen to us, too, and then it can be a true dialogue.

The Rev. Alan Johnson

United Church of Christ Mental Health Network

June 3, 2013

During a visit, Dean let me sit in his chair from Cuckoo’s Nest

I lost a good friend and mentor last week and our nation lost a true mental health champion.

Dr. Dean Brooks died Thursday morning in Salem, Oregon, which is home to the Oregon State Hospital, where he was the superintendent from 1955 to 1981. He was 96.

Dean is best-known  for his role in the 1975 movie, One Flew Over The Cuckoo’s Nest. Although he was not an actor and never wished to be, Dean was cast as Dr. John Spivey, the director of the mental hospital in the landmark film. The irony is that Dean Brooks was the exact opposite of the dictatorial and callous superintendent who he portrayed in the film — a fact that several of his friends recalled this week in a joint telephone call after his death.

I joined Dean’s friends in talking about how he always put his patients first.  An example: Dean told his secretary at the state hospital to put letters and memos from patients at the top of his office’s  IN BOX. One day, she mentioned that the governor had sent over an important  note. Dean told her to put it on the bottom. He’d get to it, but first had to read the notes from patients.

In the movie, rebellious patient, R. P. McMurphy, played brilliantly by Jack Nicholson, helps several  patients break free from the state hospital so they can go fishing. When their fishing  boat is returning to the pier, a stern-faced Dean Brooks is waiting with authorities. In real life, Dean was one of the first superintendents to allow hospital patients to wear street clothes and to recognize the importance of community involvement in therapy. 

Life magazine tagged along when Dean organized a rafting and mountain climbing expedition for state hospital patients. Under his direction, 51  patients, who had been diagnosed with chronic and severe mental disorders, were paired with hospital employees for a 16-day outing. Dean took great delight in recalling how it had been impossible during that trip to tell who was the patient and who was a staff member. He was especially pleased in remembering how a psychiatrist had to depend on the steady hands of a patient with schizophrenia who was holding the ropes while the doctor dropped down the face of a 110 foot tall cliff.

(I later learned the outing matched Dean’s personality well. He was an avid rock climber. Sometimes he could be seen on hospital grounds carrying a backpack filled with stones to build up his endurance. He even rappelled once down the hospital’s exterior.)

The patient/staff outing reaffirmed Dean’s belief that a human connection between people is essential to recovery. In fact, of the 51 patients on the trip, all but 8 were released from the hospital within a year — and this was long before the development of newer anti-psychotic drugs.

When Cuckoo’s Nest was being shot, Dean  insisted that patients be given jobs and, much to his credit, famed director Milos Forman, teamed actors with patients and had his movie stars locked in a ward for several days so that they could experience the isolation that patients often felt in state mental institutions at that time.

In my mind, America had a Dorothea Dix in  Dean Brooks. His entire life was dedicated to advocating for persons who society neither wanted to see or hear.

His family was with him when he passed and one of his last requests was for them to write down several ideas that he wanted to share with the think tank. Moments before he died, when he was fading  in-and-out of consciousness, he opened his eyes and said, “We must continue the good fight.”

That was pure Dean. To his last breath, he cared about improving the lives of others.

FROM MY FILES FRIDAY - I first published this blog in 2010, but the question is still germane. When do you reveal that you have a mental illness?

WHEN DO YOU GO PUBLIC?  May 2010

From the moment I was first contacted by a House subcommittee investigating our failed mental health care system, I have urged its staff to hear testimony from persons with mental illnesses. Rep. Tim Murphy (R.Pa) has conducted two hearings and a public forum, the most recent being held last week.

Yet, the House Oversight and Investigations subcommittee of the Energy and Commerce Committee still has not heard from anyone who actually has a mental disorder.

Rep. Murphy risks undercutting his subcommittee’s earlier accomplishments unless he holds another hearing — this one entirely focused on listening to persons with mental disorders.

Unfortunately, excluding persons with mental disorders from events is still much too common.  I often arrive at symposiums, only to find that no ”consumer” has been invited. This is wrong. It further marginalizes and stigmatizes our loved ones.

The most common excuse  I hear is that a consumer might be embarrassed if he or she is asked to tell their story.  Why? There should be no shame in having a mental disorder — only shame in not offering meaningful help to someone who needs it.  I am not blind to the dangers of speaking out because of stigma.  A person has to wish to speak out publicly.  However, the idea that no consumers want to speak is ridiculous.

The Washington Post yesterday published a front page story about a man with a mental illness. Take a moment to read the comments posted on my blog by consumers. NAMI runs In Our Own Voice.   Speakers also can be found at Mental Health America and Depression, Bipolar Support Alliance.

I have never been involved in a mental health group where there is no one willing to speak.  All too often, consumers don’t volunteer because they are not asked. No one thinks there is anything that can add. They might say something embarrassing. 

When Virginia governor Timothy Kaine appointed a panel to investigate the shootings at Virginia Tech, I urged him in a Washington Post editorial to appoint a consumer on the panel. Who would know better than a consumer what barriers might keep someone who is showing the symptoms of a mental disorder in college from seeking help?

Clearly, if someone is in the midst of a psychotic break and has impaired thinking, asking them to heal themselves is nonsensical. But most persons who are in recovery have strong, insightful opinions about what helped and didn’t help them. Even when someone is psychotic, listening to them and treating them respectfully is important.

 The last time my son was picked up by the police, he asked the Crisis Intervention Team officer to let him ride to a hospital emergency room in the back of a police car without being handcuffed. Using his discretion, the officer chose to not shackle my son. When they reached the hospital,  my son thanked the office for treating him with understanding.  Unless you are a person who has been handcuffed while psychotic, you may not understand how significant that CIT officer’s action was.  The previous time when officers encountered my son, he resisted when they handcuffed him. That’s when he got tasered and ended up being hogtied.

I listened to him and I learned.

I realize that some are fearful of having consumers testify because many of the most vocal often express views that are contrary to the medical model and to  psychiatry. As long as individuals express themselves respectfully without engaging in personal attacks, browbeating and hyperbole, then they should be heard. Their arguments can stand or fall on their own merits.

The comments posted on my blog that are the most helpful to me are written (as they were last week) by persons who describe their personal experiences with our mental health care system. We must learn from each other and that includes hearing from individuals who are in recovery.

I’ve been told the subcommittee doesn’t have money to bring witnesses to Washington D.C. to testify. (Perhaps it should get a grant from SAMHSA!)  Fortunately, there are many eloquent consumer advocates who live near our nation’s capital. Dr. Kay Redfield Jamison probably knows more about bipolar disorder than anyone, in part, because she lives with it. She would make a fabulous and fair-minded witness.

I wish the subcommittee would find a way to lure Catherine Zeta Jones, Jane Pauley, former Rep. Patrick Kennedy or some other high profile figure to the witness table because that would generate publicity and show the public a different face from the photos of the shooters in Aurora, Tuscon, and at Virginia Tech.

 The subcommittee’s Democratic co-chair, Rep Diana DeGette (Colo.) reminded her fellow members last week at the start of their third hearing that it still hadn’t heard from consumers. The subcommittee needs to listen to her.