Friday June 21, 2019

When Serious Mental Illness Meets a Failing Health System

Sandra Luckow is a filmmaker and consummate storyteller. She is also completing her tenure as an Artist in Residence in our Mental Health Arts and Advocacy Program funded by the National Endowment for the Arts. Her film, That Way Madness Lies…, tells the heart wrenching story of the Luckow family’s odyssey through a broken mental health system in their attempt to secure help for Sandra’s brother, Duanne, as he descends into madness.

Much of the footage for That Way Madness Lies … comes from Duanne himself. What began as a testimony of his sanity, his iPhone video diary ultimately becomes an unfiltered look at the mind of a man with untreated schizophrenia. As Duanne’s mental illness progressed, he turned his phone and footage over to Sandra and asked her to take up the story. I interviewed Sandra about the film and its importance for serious mental illness advocacy and treatment:

 

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1. Can you explain more background about the film and why you decided to make it? When my brother was involuntarily committed to the Oregon State Hospital, the last thing on my mind was my profession, let alone making a film about this heartbreak. Before Duanne was committed for the first time, he told me that he didn’t know whom to believe or trust. I suggested he use his new iPhone to record when he was unsure so he could review it later or show it to someone he trusted. I didn’t know he would be recording so much. Once inside the hospital, he continued to record and his phone was taken away. He asked me to retrieve the phone and look at the videos. I was shaken and devastated by what I saw: first-person, unfiltered psychosis, not a portrayal or interpretation of psychosis. It was scary and confusing and surreal.

I took the footage to Dr. Larry Davidson at Yale School of Medicine. He convinced me to continue filming to give context to Duanne’s footage because it was so rare a glimpse and so valuable to understanding this illness. Also, the Portland Police Bureau had just been reprimanded by the DOJ for “excessive use of force against the mentally ill.” Twelve mentally ill persons had been killed by police officers in a three-year period when I began filming. I thought that if I made my brother the poster-boy for the mentally ill, it would, at least, keep him alive. Although it does not appear in my film, I began with an interview of the Chief of Police and discussing my brother with him.

 

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2. You have earned many awards in making this film, what has been most gratifying for you? I think the most gratifying has been watching the film with people who suffer similar symptoms as my brother – when they see similar behavior in themselves and it reaffirms their commitment to their treatment or adherence to their medication. Several people with mental illness have approached me after screenings and thanked me for an authentic and fair portrayal of my brother even as I became the adversary. I have spent every day since I began shooting this film terrified that I would inadvertently misrepresent my brother and his point of view. Some extended family members (not all) vilified me for such familial exposure, but more recently, they asked for copies of the film to lend to people they know who are confronting mental health issues with a loved one.

 

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3. What has surprised you along the way? What has been the most difficult/challenging? What has surprised me the most and what has been the most difficult and challenging are one in the same: my inability to get any meaningful help for my brother. To say that it was easier, and that I was more successful, at raising the $700,000 required to make this film, following the story for eight years, burying my parents, and finding distribution for it, is a shameful travesty. Just because the film comes to a narrative resolution, the story continues for my brother and me. My experience has been especially intense because I was blindsided by arrogance and ignorance. I really thought I could circumvent the imposed procedural suffering because I had contacts, two Ivy League affiliations, as well as investigative journalistic training as a filmmaker. Making the film was the easier of the two challenges.

As for Duanne, he refuses to believe he has a mental health issue. In the words of a respected mental health professional, “he is in the process of dying with his rights on.” The cycle is that he is sent to jail for criminalized behavior that stems from his illness. In jail, he is found not competent to stand trial, so he is sent to the state hospital for competency restoration. After a short stay, sometimes as little as a week, he is not restored to competency because he has the right to refuse medication or treatment of any kind. Which he does. He goes back to the jail where he is deemed incompetent to stand trial and the charges are dismissed. He is released to the streets that very evening. And then the endless hamster wheel starts again.

 

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4. “That Way Madness Lies…” is exquisitely personal and yet every time you have a screening, people tell you that the film captures their story as well. What is it that is universal? Kathy, you know from your work that mental illness of all kinds manifests itself in remarkably similar ways across cultures and geography. It seems that the stigma, fear, shame, and downright repulsion of serious mental illnesses are also universal. What seems to be a variable – and, unfortunately, to a greater rather than a lesser degree – are the poor systems of care for those afflicted and the vilification of every type of caregiver. It seems that the “mental health industry,” – and that’s how I’ve come to see it – is trying to de-stigmatize severe mental illness like schizophrenia with platitudes and skewed statistics. And yet, at the same time, the symptomatic behavior of the mentally ill is criminalized. This contradiction in our approach to the treatment of mental illness is truly mind-boggling. The film doesn’t try to rebrand the ravages of mental illness nor does it try to explain the ridiculous contradictions of the system, but rather it shows the very real costs, economically, emotionally and psychically. I think audiences appreciate that. The film is very real in its nuance of tragedy without villains or heroes.

 

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5. So the system is broken, what about the mental health professionals? What could they do better? Differently? I think mental health professionals should heed the first principle of the Hippocratic oath, “First, do no harm,” but not use the oath as a defense to do nothing at all. It is all too easy to not see the larger pictures and ramification of one’s actions or inaction. I have found the people working in the trenches of mental health – the first responders, the emergency room doctors, and others – to be valiant heroes too often restricted by policy. I had the opportunity to meet the cops who went to talk to Duanne at my parents’ house. They are in the film. They were professional and creatively masterful in their handling of the situation, and it was, at best, precarious. I burst into tears when I met them. Their kindness was beyond their job description.

Unfortunately, mental health professionals are working under policies that contradict and subvert their skills, knowledge, profession and care. It has astounded me how clueless mental health professionals are about the laws and policies that get in the way of providing good care. In a perfect world, mental health professionals, not the criminal justice system, would determine the procedures and systems for delivering mental health care.

 


Upon receiving the Nobel Prize, William Faulkner said it is the work of the artist to lift up people’s lives and help them endure. Luckow’s work of art goes one step further. It calls on us to repair our broken mental health services so that individuals with serious mental illness and their families no longer have to endure the failures of today’s system.

That Way Madness Lies … is available on DVDKanopyAmazon Prime and iTunes in the US and Canada. The film is also being distributed by First Run Features, and it is available for conferences and as a fundraiser for local advocacy groups. Sandra is available for Q&A.