During the first month of my two-year Stanton Fellowship in 2016, I stole away to Montana with books to read, a clean notebook and an open mind about how to approach my Stanton inquiry (which was: why is is so hard to help the most severely mentally ill people left to languish on our streets get help and housed?). During that retreat, my plan to was to do a deep dive into the history of our mental health system, to understand how we ended up in this place. At that point, I had no idea where my fellowship journey was going to take me, but after the end of that trip, I had made a list of people that I needed to get to know in order to make progress on my inquiry.
In my research, DJ Jaffe’s name kept popping up, and therefore landed at the top of that list. He had a website that could grip you like an addictive video game: Mental Illness Policy Org. Click. Click. Click into a deep dive on any topic you wanted to better understand.
I am trying to remember the first time I spoke with him on the phone, but I remember how thrilled I was that he had heard about me. By that time, I had published a few blogs of my own about the frustrations of how hard it was to help people with severe mental illness on the streets of Hollywood, and somehow he had discovered them. “I’ve been wanting to talk to you,” he said, “to figure out who you are.” On my end of the phone, I felt like I was speaking to a rock star!
DJ became a mentor to me. This was a key attribute – he connected people. Even a month before he passed away, he had reached out to me to see how things were going with Heart Forward and the Hollywood mental health pilot in the wake of Covid. I told him about my “pandemic pivot” – staying busy to keep the flame alive during this time. He told me about his illness and how serious it was and despite all that he was going through, he gave me the names of three people he wanted me to connect with and facilitated those connections.
My heart was so heavy to hear the news of his illness and I just could not imagine how we were going to keep this passion alive without his constant vigilance.
SMI deserves the attention
DJ kept the flame lit to the very end of his life to bring attention to the fact that people with serious mental illness get lost in the shuffle. His dogged insistence on this caused some to feel uncomfortable, but one has to give him credit for not veering from his mission. Even the day before his passing on August 23, he re-tweeted something he had written in December, 2019. It was an article in The Hill in which he commended the mental health plan proposed by Kamala Harris in her presidential bid. On August 22 he tweeted: @JoeBiden should keep @KamalaHarris’ brilliant #mentalhealth plan. It focuses mh spending on reducing homelessness, arrest, incarceration among the most seriously mentally ill, rather than trying to improve ‘mental wellness’ in the masses.
His book, Insane Consequences, cut to the heart of this matter. He starts the book with a definition of “serious mental illness” which is different from mental illness. He also suggests that people who call themselves “mental health advocates” don’t advocate for people with serious mental illness. DJ could be very direct; it was never ambiguous where he stood on such matters.
If you care about this issue and you haven’t read his book, the time to order it is now. Pulling directly from the Introduction, which he titles “Overview of Everything,” he offers these tantalizing teasers as to what his book is about:
- America’s mental health system is insane, expensive, and ineffective. Under the guise of protecting civil rights, it is killing people.
- Our mental health system is not based on science and has nothing to do with compassion.
- While most people with mental illness do not become violent, those with untreated serious mental illness are more likely than others to become violent. Their victims are most likely to be members of their own families.
- The mental health industry cherry-picks the most compliant and least symptomatic.
- It’s become harder to get into Bellevue than Harvard.
- …lack of money is not as big a problem as lack of leadership.
How could the Trieste model really help people with serious mental illness?
DJ believed in me, but last summer, after the state MHSOAC had approved funding for the Hollywood mental health pilot, inspired by the Trieste guiding principles, he called me up to challenge me. He said that he had finally read the proposal submitted to the state all the way through, and he did not see enough emphasis on how people with SMI would be cared for in a prioritized way. He said that it sounded like just another in a series of pilots, a potential waste of Prop 63 funds, a detour down the road to “whole person care” and “social recovery.” He saw these as politically correct buzzwords that ignore SMI. I assured him that my portal into this work was concern for SMI and that remains my priority. He got me thinking, though and I wrote a blog about this last July where I reference our conversation and my defense of my similar passion.
It always mattered to me what DJ thought. I always felt I could have an honest conversation with him. No one will be able to fill his shoes, but I know I speak for many who learned from him, who felt encouraged by him, who sought advice from him. We will stay committed to this work and ask ourselves, “what would DJ say?” And to Paula and his family and closest friends, my heart and my prayers are with all of you as you grieve his loss. He will be missed but his legacy lives on.