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Death of an Advocate: Glenn Koons

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Glenn Koons and Marlee Matlin

 

I first met Glenn Koons when I was invited to speak at a luncheon in Montgomery County, Pa., being hosted by the National Alliance on Mental Illness. It was one of the first speeches that I delivered after publication of my book and before my talk, NAMI Board Member Carol Caruso introduced me to Glenn. I was immediately struck by his easy-going manner. Carol bragged that Glenn was one of the first NAMI trained  Peer-to-Peer mentors in the entire nation. Glenn and I spoke for several minutes and I was impressed by his thoughtfulness and enthusiasm.

Our paths continued to cross during the coming years at various NAMI meetings and conventions. I was always happy to see Glenn and was thrilled when I learned that he had been one of only four NAMI peers who had been invited to the White House by President Obama to celebrate the 20th anniversary of the Americans with Disabilities Act of 1990.   Glenn wrote about the event for a NAMI blog.

A few weeks ago, I was asked by NAMI’s Darcy Taylor to write an article for NAMI’s VOICES publication. In my article, I mentioned three “consumers” who have inspired me. They are  Dr. Fred Frese, Diana Kern, and Glenn Koons. 

The day after I submitted my article, an email arrived telling me that Glenn was dead.

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Forty Years Later Jail Still Violating Rights

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Shortly after my book, CRAZY: A Father’s Search Through America’s Mental Health Madness, was published in April 2006, I received a telephone call from an attorney at the U.S. Department of Justice who asked me about incidents at the Miami Dade County jail that I’d described in my book. The federal investigator was curious about my claims that correctional officers, who worked on the ninth floor of the jail, physically beat inmates. During the ten months that I’d spent doing research at the jail, I had been told several times by officers that I needed to exit the floor “for my own safety” while jailers  “put their hands” on troublesome inmates. When I returned to the cellblock later, I was  able to confirm that guards had gone into cells and beaten inmates. One officer was especially infamous for abusing prisoners.  He bragged about it. At the time, I was surprised at how openly officers talked to me about the beatings.

Last Friday, the Justice Department released a three -year study of the Miami Dade corrections department and the federal investigators’ findings confirm what I first revealed in my book. Put simply, the Miami Dade Pre-trial Detention Center is a living hell on earth for inmates with mental illnesses.

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Telling Our Stories

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Since the publication of CRAZY, not a week goes by without me getting a letter or email from a distraught parent whose son or daughter has been arrested or is in jail because of a crime that was clearly tied to mental illness. The most common comment that I hear when I am on the road giving speeches about my book is: “You told my story.”

I always feel inadequate when I try to answer requests from other parents seeking help. I’m not a lawyer. I urge people to contact their local National Alliance on Mental Illness chapter or Mental Health America for guidance. I sometimes suggest  they contact the Bazelon Center for Mental Health Law. I ask if their local community has Crisis Intervention Trained police officers, a mental health court, or a jail diversion program.

And then I ask them to consider going public. I tell them newspaper and television reporters would be interested if they knew a person was put in jail because of a mental illness. Not everyone feels comfortable being interviewed. It also is never a good idea to expose someone you love to the media if he/she wants to keep their illness secret. Even though my son urged me to write my book, I spent many sleepless nights worrying that our openness about his arrest and illness would harm his future.

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Nickelodeon Criticized for Stigmatizing Stereotype

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You might remember that I created an award called the Stupidity Award for Promoting Prejudice a while back and gave the first to an NBC sports writer who didn’t see anything wrong with a high school dance team in Waunakee, Wisconsin wearing straight jackets with the word PSYCHO WARD printed on them as they performed in a state competition.   

I was tipped off to that school’s insensitive, stigma-promoting  performance by a fellow mental health blogger, Chrisa Hickey, who posts her thoughts at The Mindstorm: Raising a Mentally Ill Child.

Chrisa sent me an email about a new example of stigma in the media. From reading her note, it sounds as if another SAPP award is due.

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Dr. E. Fuller Torrey: Sounding An Alarm or Being an Alarmist?

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For the past several weeks, I have had an interesting and troubling email exchange with Dr. E. Fuller Torrey, perhaps the most controversial psychiatrist in America. He’s also one of the most influential.

Today, Dr. Torrey is best known for his campaign to get Assisted Outpatient Treatment laws passed. An example is Kendra’s law. There’s plenty on the Internet — pro and con — about AOT. 

It would be a mistake, however, to believe that Dr. Torrey’s impact has only been in promoting AOT legislation. He has been sounding alarm bells and criticizing our mental health system for decades.  Among other things, he has founded two organizations. The Stanley Medical Research Institute is a nonprofit organization that supports research looking for the causes and treatment of schizophrenia and bipolar disorder. According to its webpage, it has given away more than $300 million since 1989 for research, mostly outside the U.S. The second group is the Treatment Advocacy Center which describes it’s purpose as “eliminating barriers to the timely and effective treatment of severe mental illness.” TAC’s main focus is pushing for passage of AOT laws.

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Drop-In Center, Dancing Doc, Baton Rouge

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If you are a regular reader of my blog, you know one of my favorite quotes is attributed to Margaret Meade who said:

Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that  ever has.

One of my favorite things about traveling is getting to meet inspiring people who are changing their communities and improving the lives of persons with brain disorders.

Here are some examples.

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