Recently I had a chance to look at a review of DJ Jaffe’s new book, Insane Consequences: How the Mental Health Industry Fails the Mentally Ill. As can be expected, the book will meet with considerable blowback — for example, the title of the book using the long-outdated term “insane” will surely set some bells and whistles going.
But I found myself asking whether that is such a good thing considering the deep polarization, among many other dynamics, that is spreading almost like an illness through all of America these days and even contaminating views of us abroad as well.
The dispute that will be ignited further is one between the proponents of DJ Jaffe’s world and that of the “other side” — those who are equally dissatisfied with how the mental health system works because it does not respect the individuality of persons with major mental health challenges, and does not support the idea that people can recover, even those with the most damaging diagnoses such as “schizophrenia.” The latter group is one that is actually quite diverse and includes everyone from progressive members of the American Psychiatric Association (admittedly still a minority though a growing group) to the antipsychiatry advocates. There are numerous other advocates in between, including some longtime NAMI leaders who are speaking to the harm of conventional mental health treatment and pushing for many kinds of alternatives.
I began to reflect on my four decades of experience as a mental health commissioner, manager and clinician, and started to consider the possibility that all of us have been traumatized in some way by some very disruptive life experiences and a system that doesn’t respond very well in spite of many good intentions.
So, what if we tried viewing our angry differences through the lens of trauma dynamics? For those of us who have been extremely angry about NAMI and its current perspective, maybe we should stop asking “what’s wrong with you?” and ask, “what happened?”
When I began working with NAMI 30 years ago in a community mental health center, I was struck by the deeply traumatic experiences that family members had in trying to access effective crisis services when a loved one was highly agitated and threatening, or suicidally depressed, or hearing voices, or talking in a wildly confusing manner. It was extremely challenging to get support for this experience, let alone to cope with the aftermath of getting ongoing care, housing, financial resources or help with a return to school or work.
I knew something about this because my older brother was hospitalized in a psychiatric unit at UCLA in the 1960s due to severe anxiety attacks that left him unable to function in a challenging academic world. My parents reacted with anger and denial and fear of stigmatization by yanking him out of the hospital as soon as he stabilized on psychiatric medications. He never fully functioned again at the level his intellect would have allowed.
Most NAMI members have been responding, like my parents, with many of the “symptoms” of trauma — feelings of victimization, anger, depression, fear, denial and helplessness. NAMI provided a desperately needed cushion with the mutual support members gained from their monthly meetings and the beginnings of policy and political advocacy. But it also left a void, a kind of vulnerability to certain influences that for a variety of motivations promised answers and relief. Not all of these influences were motivated by pure altruism.
I am thinking specifically of the companionship that developed between the American Psychiatric Association and Big Pharma. I say this with some trepidation because of the risk of raising defensive hackles of many in the world that DJ Jaffe speaks to — and even some who want a different kind of radical change in the way we do this work. That is not my intent. In fact, I would very much like to see more real dialogue and less divisiveness.
There are more and more NAMI members, especially at local levels and even some at the national and state levels, who have become uncomfortable with that part of the NAMI perspective that still thinks in terms of lifelong chronicity. They are wanting more hope than that and recognize that words like “serious and persistent mental illness” don’t really capture the experience they or their loved ones have. In fact, the very idea that recovery isn’t possible can be a major obstacle to recovery itself.
One of my favorite stories that illustrates this was told to me by Dr. Dean Brooks, the legendary superintendent of Oregon State Hospital (for 27 years between 1955 and 1982), known to people all over the world as Dr. Spivey in the movie One Flew Over the Cuckoo’s Next. When he was in his 90s, Dr. Brooks’ family asked me to spend several hours with him every Friday morning for a number of months to get as many of his stories written as possible. Given my interests in the history of psychiatric medications, I asked him what he had thought of them when they were first introduced in the 1950s. He said that everyone had great hopes that they would be the answer that had been so elusive in helping people get discharged and return to normal lives in the community.
He said there was one patient that all the staff believed was hopeless, chronically mentally ill and would never be discharged. But he was placed on Thorazine anyway, and in six months, the staff came to Dr. Brooks and said that the medication had worked a miracle and they were now ready to start discharge planning. Being a hands-on and very curious superintendent, Dr. Brooks pulled the patient aside for a private chat and repeated the miracle story he’d heard from staff. The patient looked at him and confessed something very surprising — that he had been “cheeking the meds” the entire time. So Dr. Brooks asked himself, “Who are the meds for, the staff or the patients?” What this story speaks to is the power of belief in the capacity for all those with major mental health challenges to get better and move on with their lives.
Unfortunately, there are commercial interests that depend on chronicity for the massive profits they have made and continue to make on the sale of psychiatric medications. Just one example among many is this: a single child psychiatrist in Oregon prescribed $457,000 worth of antipsychotic medications to children and adolescents in just one year. It should be well known by now that psychiatric medications are among the most profitable in the industry.
This is not to say that all meds are wrong for every individual. But the unbiased research on outcomes with the use of these drugs are not well known to many NAMI members. And current and past leadership in the APA have been less than open to hearing about it. Fortunately, in a quieter segment of the APA, there is more willingness to look at a recovery perspective and the research that supports it.
There are an increasing number of well-crafted and unbiased analyses of the ways in which psychiatric medications are an obstacle to recovery for many people with mental health challenges. One of the problems has been to look into and beyond the publications funded and ghostwritten by the pharmaceutical corporations. A current case in point is the article co-authored by former APA President Jeffrey Lieberman about effectiveness and risks of antipsychotic drugs. Rather than go into the careful evaluation of the points made in the work, I suggest you find a quiet corner when you have time and honestly read Robert Whitaker’s report, “Psychiatry Defends Its Antipsychotics: A Case Study of Institutional Corruption” (and look beyond the title if at first it bothers you).
As I stated at the beginning of this blog, the last thing we need in the United States right now is further division. If there is any good that can come out of our political polarization, it is a recognition that it has gone far enough. We need to talk and act on our common dreams for people who are dealing with major mental health challenges. And we need to recognize that we have all been vulnerable to a retreat into extreme views from our respective traumas, to some degree.
So, what to do? I believe we can live without using the term “chronically mentally ill.” I recently spoke to a high school class and one of the students came up to me afterwards to thank me for the discussion of mental health issues, and introduced himself as having a chronic mental illness — he said he was “a schizophrenic.” Whether you agree or disagree about the diagnosis, wouldn’t it be better for people to think of themselves as someone with a positive future and not build their identity around an illness or a label?
Another suggestion is to bridge the information divide about programs that work — there is still not enough recognition of so-called “alternatives” like recovery-oriented approaches to acute care, Open Dialogue, Oregon’s Early Assessment Support Alliance (a statewide project that gives hope to nearly every young Oregonian and their families during a first psychotic episode), Soteria Houses, eCPR, Hearing Voices Network, a whole variety of peer supports and many others. Most of these kinds of programs employ a “selective use” model for using psychiatric medications. I believe that until we have a much more advanced psychosocial system of care, there will be a place for careful, mostly short-term use of psychiatric drugs. I may be wrong, but I’m going to be hopeful and do everything I can to promote these kinds of supports.
To sum things up, I think it’s high time for national, state and local leadership in family and peer circles to try dropping some defensiveness and make room for calm settings where similarities as well as differences can be talked over. And then we should move beyond polarization and get to work. Investigate and support organizations like the Foundation for Excellence in Mental Health Care that are promoting promising research, education and programs for recovery. There is so much more we could be doing if we stopped wasting time, resources and energy on non-productive arguing.
