(9-13-22) The National Alliance on Mental Illness (NAMI), the largest grassroots mental health organization in the nation, is publishing a wide ranging practical guide – You Are Not Alone – this month written by its Chief Medical Officer Ken Duckworth. Long-time NAMI advocate (and a good friend of mine) Ron Honberg offers up this information.
You Are Not Alone: Ken Duckworth’s Practical Advice
Guest blog by Attorney Ron Honberg, former National Director of Policy and Legal Affairs at NAMI.
Dr. Ken Duckworth’s motivation was simple.
He remembered the day his father was diagnosed with severe bipolar disorder, the need his family had for clear, practical advice about how they could best support his father, and how this information was never provided by those responsible for his father’s treatment.
He soon realized this was a common experience for so many other individuals and families – back then and even today. He knew that peers and families throughout the country have a story to tell and that lessons from these stories could be integrated in a practical way to help others. He resolved to write a book that would combine personal experiences with current clinical, research and policy information.
The result is “You Are Not Alone,” which is being released on September 20th. Unlike most books, where the author holds the copyright, NAMI owns this book and will receive all of its royalties. This is the first time NAMI has published a book.
Knowledge & Advice From Those In The Trenches
Ken interviewed 130 people, a diverse group of individuals with varying life experiences, for the book. Unlike many books about mental illnesses, every person quoted in the book agreed to be identified, believing the inclusion of their names would reduce the shame and isolation so frequently associated with tragic outcomes.
What makes this book unique is that it does not talk about mental illness in dispassionate terms like so many written by doctors and researchers. Rather it incorporates lived experiences of people and families as a source of practical information and guidance to others struggling to navigate the complexities of mental illness and the mental health system.
In compiling information and stories for the book, Ken spoke to people from 38 states, 11 self-identified races and ethnicities, ages 16 to 100 (one person said she was “old as dirt”). Among those interviewed were Eleanor Owen, a founding member of NAMI (who has sadly since passed away), Joyce Burland, the creator of NAMI’s Family to Family program, Eric Smith who speaks about anosognosia and how he believes Assisted Outpatient Treatment (AOT) saved his life, Mary Ellen Copeland, the creator of the WRAP (Wellness Recovery Action Program), and Donna and Phil Satow who founded the Jed Foundation, and many others.
First-person interviews cover a diverse array of topics, including the experience of participants in early psychosis programs, utilization of Dialectical Behavioral Therapy (DBT) in the treatment of borderline personality disorder, management of Post-Traumatic Stress Disorder (PTSD) with Eye Movement Desensitization and Reprocessing (EDMR) therapy and service dogs, and the use of Exposure Response Prevention to address obsessive compulsive disorder (OCD). Ken also spoke with peer specialists who describe how their work helped with their own recoveries, individuals who find meaning in teaching NAMI’s In Our Own Voice program, and families who share what they do to improve communications within their family and facilitate advocacy outside of it.
Dr. Ken Duckworth Includes Best Practices Information: Labor Of Love
You Are Not Alone also incorporates current information about research and best practices in treatment, services, recovery and advocacy. Examples include Josh Gordon, Director of the National Institute of Mental Health (NIMH) on why people should participate in research. Xavier Amador describes how to talk with someone who is experiencing anosognosia. Clarence Jordan discusses how to become a Peer Specialist. Judith Beck describes Cognitive Behavioral Therapy (CBT) and Kate Hardy talks about how CBT can be applied to psychosis. Bob Drake focuses on supported employment and how work is an effective mental health intervention.
I also spoke, as an attorney, to Ken about the legal rights in the workplace and in housing.
Writing this book has been a long-term dream of Ken Duckworth, a true labor of love. He talks about how meaningful an experience it was to write the book. As he worked on the book, he thought constantly about NAMI’s founding members and about the thousands of people who have worked so hard over the years to create and strengthen the NAMI movement.
“It was humbling to write NAMI’s first book,” Ken says. “I was aware I was standing on the shoulders of giants every day I was writing. I hope they would be glad that NAMI’s presence and lessons from real people will exists in libraries and bookstores across the country and that each sale of this book will support the organization they worked so hard to create.”
More information about You Are Not Alone and the national schedule of Ken Duckworth’s appearances to discuss the book can be found at https://www.youarenotalonebook.org/.
ABOUT DR. KEN DUCKWORTH: Dr. Duckworth is Chief Medical Officer for NAMI, a position he has served in since 21003. He is a graduate of Temple University School of Medicine and trained at the Harvard University-Massachusetts Mental Health Center in adult, child and adolescent, and forensic psychiatry.
ABOUT RON HONBERG: Ron is well-known and admired in mental health circles for his tireless advocacy efforts. He retired in 2019 after serving for many years as NAMI’s National Director of Policy and Legal Affairs. He currently serves as a volunteer and as a consultant to NAMI on mental health and policy issues.
Tomorrow: An Excerpt from You Are Not Alone.