Death of an Advocate: Glenn Koons

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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Friends and Inspiration at NAMI Convention

Rather than giving a traditional talk at the opening session of the National Alliance on Mental Illnesses’ national convention in Chicago last week, NAMI Executive Director Mike Fitzpatrick asked me to join him in a “conversation” about the state of mental health.   

I was worried because it was supposed to be for thirty-minutes. What could we possibly discuss during a half hour on stage that the more than 2,300 people in the audience would want to hear? Ironically, I only got to my fifth question when we ran out of time.

We began by talking about the shootings in Tuscon and Virginia Tech. How should NAMI members and advocates react when someone with an untreated mental illness causes such havoc? I immediately brought-up the ongoing criminalization of persons with mental disorders. Much of our discussion was about money, especially NAMI’s disturbing report, State  Mental Health Cuts: A National Crisis. Mike’s grim warnings about potential cuts to Medicaid and having the states take responsibility for federal funds allocated for persons with mental disorders were insightful and alarming.

Other topics included NAMI Standards of Excellence, welcoming diversity, making sure that consumers and parents had seats at the NAMI table, and the many positive changes that have come about because of NAMI. Mike rightfully bragged about Family to Family courses, In Our Own Voice, CIT training in juvenile facilities, and NAMI Walks which raise millions each year.

He ended by asking an important question: IF NOT NAMI — THEN WHO?  NAMI is the largest, grassroots mental health advocacy group in the U.S. Who will fight for those of us with mental disorders or family members with them?

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