The criminalization of mental illness is nothing new. Throughout human history, if you had a mental disorder — especially if you were already a member of a marginalized or minority group — your could expect to be isolated, exorcised, operated on, or abused.
The word "bedlam," which we now use to describe a scene of chaos, began as the name for a notorious English hospital for the "insane." And it's a fitting name for filmmaker and psychiatrist Kenneth Paul Rosenberg's intimate and unforgettable new documentary about the state of the mental health system in America today, where the stigma of mental illness still runs deep, and the punishment for it is often shockingly punitive.
Shot over the course of five years and based on Rosenberg's book of the same name, "Bedlam," airing now on "Independent Lens," explores the crisis through the diverse experiences of several individuals and their families navigating the Los Angeles hospital, housing, and prison systems. It also reveals Rosenberg's own deeply personal investment in the story, and the secrets his family held on to for decades.
Salon spoke recently with Rosenberg via phone about "Bedlam," and how our current global health crisis could lead to a better mental healthcare system.
Your family story impacted your whole life and your whole career. Can we talk about your sister and the influence she had on you?
It wasn't really until I was about 40 years old and I did talk about it. In fact, my closest friends didn't know the story of my sister until they saw the film or read the accompanying book.
This is not an easy thing to talk about, but it's a vital thing to talk about. I'm very fond of the James Baldwin quote that "Not everything that is faced can be changed, but nothing can be changed until it is faced." I think that where we are with serious mental illness today. We have no problem talking about COVID. It's a horrible crisis. But we still have a hard time talking about, "I have schizophrenia," or "My child has bipolar disorder," or "We need antipsychotic meds and we can't get them, or the meds are inadequate." What do we do? Most people have a hard time talking about that to this day, which makes the suffering and alienation and the predicament all across the board more difficult.
That's why I did it, that's why I talked about my sister in the film, because I needed to. And I was coached in my head by the bravery that I've witnessed in the folks that I filmed. If they could do it, I should do it too. It would help the viewers understand why this is so important to me and why this should be important to you. I could have gotten away just by being a psychiatrist, that would have been enough reason to make the film. But I think as a family member, that helps people understand it more.
My sister's life influenced me probably more than anyone. We were very close as children. She wasn't the easiest the sister to have at times. She had anxiety, and that translated into irritability and some aggressiveness. It wasn't easy at times at home and wasn't easy for my parents. But before I was 14, I don't think any of us realized, and I would say my parents and my extended family never fully grasped, that she was on her way to being being of those 4% of people who have a serious mental illness.
I was a Jewish boy, and my parents wanted me to be a doctor. A psychiatrist wasn't the doctor they had in mind, without a doubt. What I saw in the psychiatrist who addressed my family inadequately was lots of faults in her care. But still what I saw in the psychiatrist was that they had some semblance of a way of understanding this and therefore some hope of getting us out of this mess. My sister and my parents, I won't say ignored this, but they couldn't embrace either the diagnosis or the need for chronic treatments. That really affected me throughout my entire life.
I went to medical school to become a psychiatrist because of my sister. I knew that since I was 14. When I finally got in medical school, I was like, this is really very little to do with psychiatry. So then I started making films, which had a whole lot to do with psychiatry. My first film was about people living with schizophrenia. And that became my dual career, as a filmmaker and a psychiatrist.
It feels that there is less stigma around mental health and mental illness in our culture right now, but that it is still very classist. That understanding and that lack of shame is really only extended to a particular type of person dealing with mental illness. It is not extended to immigrants. It's not extended to low income people. It's not extended to people who are in any way the most vulnerable.
You take a Caucasian person and a person of color and put them side by side, and the psychiatrist will more likely give the person of color a worse diagnosis, a worse prognosis. They're more likely to send them to jail than a hospital. And if you happen to be a person who is also struggling with poverty, that makes it so much worse. As Patrisse Cullors says in the film, "We have a lot of things in our communities, but one of the things we try to not talk about is serious mental illness."
Her brother is perfect example. He was diagnosed and treated in jail, in prison, not in a hospital. In general if you have a serous mental illness you're about 10 times more likely to be treated in jail, and you'll have a very decent chance of being shot by the cops. But if you're a person of color and not an affluent person as Monte was, you have an even greater chance of those complications from your illness.
I think that it's absolutely true that in close-knit communities, small communities, immigrant communities, there's much more stigma. My parents were a great example of that. There is less stigma today, but still I think in a community like I grew up in, a lower working class Jewish community, the word still applies. It's still a shanda. People are very reticent to talk about their serious mental illnesses. Where we filmed in downtown Los Angeles, we saw that over and over again in people of color and the Hispanic communities as well.
A person in the film calls this the largest social disaster of the 20th century and now the 21st century. There was a turning point where we basically as a culture decided that this was how we were going to treat the mentally ill. We were going to incarcerate them and we were going to build prisons instead of mental health facilities. What happened there?
I think the first thing, to put blame where blame belongs, is it's a very bad disease. If you could treat it with a pill or one visit to the doctor, we wouldn't have this problem. We could talk about what happened and talked about it in great depth. Above all, there are very few villains and a whole lot of victims. The real problem, which I don't think we should lose sight of in this conversation, is that it's the disease.
The brain doesn't give up its the secrets easily. It's very hard to understand what's going on in any brain, especially a brain that's disordered, and having an episode of schizophrenia or bipolar disorder. Having said that, we have definitely made a bad problem worse. We did that often with the best of intentions. We created these asylums, and they were monuments to enlightenment. They were part of the age when we are going to take care of needy people. Those monuments to enlightenment became symbols of shame and disgrace, as we talk about in the book and film. We wanted to get rid of those and said, "It's the bad asylums." And we had these new drugs which we thought would herald a transformation of disease and become curable at some point. President Kennedy was one of many, but he certainly took the helm in federal government at a time when deinstitutionalization was the plan. His plan was to bring people into, "the open warmth of community."
Unfortunately, they didn't fall into to the welcoming arms of anyone. The community mental health centers that he created had two problems. One is that they were founded upon his enthusiasm, which was short-lived. And secondly, the community mental health centers, even at their best, were not able to take care of the sickest patients. They were based on the concept that we would stop new cases, and help people from getting sick.
Which we know is a very, very hard thing to do, and sometimes even impossible with the best of intentions and interventions. It was a faulty plan from the get-go.
Then, by the 1980s, President Reagan said, this is a waste of money. Let's give this problem back to the states. And then the states said, we don't want this. Within time, psychiatric facilities closed down more and more and more to the point that even the private hospitals closed down, because it was not profitable to treat psychiatric patients compared to treating surgical patients or treating other medical illnesses. The reimbursement was very poor.
That's a little complicated. Basically, the idea is that if you have a general hospital and you have a psychiatric facility in it, that facility could not have more than 16 beds or they don't get federal money, which means Medicaid. It disincentivized the creation of big psychiatric facilities, unless you have an exemption — and many states are now applying for these exemptions, California and New York among them. But if you don't have an exemption, you can't have more than 16 per facility with 16 psychiatric beds. But how many psychiatric beds are there in Twin Towers? 1,500. And there's no exemption because it's a jail. That's what we've done. We have not deinstitutionalized people as we intended. We have trans-institutionalized people, institutionalized them from one institution into a worse institution: the jails, and often the streets.
I want to ask about is the arc of this film and the subjects that you chose. It's very intentional, the stories you wanted to tell. How did it come about?
Since I made films in medical school, I realized that the way you tell a story about illness is by following the family, not just the person. Illnesses are family problems over the course of time.
One of the things that we saw as medical students, there would be the doctor on the right, the patient on the left and the patient would be in pajamas and the doctor, usually a guy dressed in some suit. This was the way for us to see what patients were like, through video recording. It was absurd because it didn't tell you anything about the patient or the family or the illness, or the experience. It just told you what the person was like at a moment of stress. I realized that the way to tell the story of the patient was to tell the story of the family and to follow them over time. Good days, bad days, live with them, be with them, understand them, and to really make a film that doesn't just capture them, but collaborates with them. That was something I've been doing since I started making films in medical school.
When I started making this film, originally I thought I'll film the emergency room. We have very clear and stringent procedures for doing that. Regulations were kept kept high in our minds and we worked with the County for two years to do it even before we filmed anything.
Then when we did, I thought, we have an interesting film here, but it's not a film about illness. It's about people in the emergency room being sick, which is only one part of it. At that point I decided that I would just film them until we had a story. Fortunately I have a good day job, so I don't have to finish something in any kind of deadline. The MacArthur Foundation helped out and supported that too, and ultimately PBS did as well. So we just filmed until it was cooked, until we could really tell a story. And coincidentally, what happened is, one of our characters, their family member co-founded Black Lives Matter and has become probably the most important mental health advocate in the world at this point.
I did learn early as a filmmaker and as a medical student, just being a doctor, things shift. If you really want to understand something, you have to be patient and stay with it. In some sense it was always my philosophy, but it was never my intention. But at some point you feel you've told a story, and there was an arc.
I'm wondering what you are thinking when you see the way that the pandemic now is absolutely devastating the most vulnerable populations: the poor, the incarcerated, the mentally ill. A lot of people hit that trifecta. You're certainly seeing that in Los Angeles and in New York. What do you think the impact of this might be? When you're looking at this crisis that we are in the throes of right now, how is this going to affect the mentally ill population in America?
My fear is that we will be so consumed with our own anxieties and worries, we won't have the bandwidth for other people's problems. But my hope is that we will have compassion for other people's problems because, what we're dealing with in COVID is not unlike what people with serious mental illness are dealing with constantly.
For those of us who have illness, this is not the first time we've been challenged. In fact, we've been challenged more. My hope is that somehow this will foster compassion. My hope is that we'll somehow be able to relate more to the families. And my hope is that we'll be able to realize that when they tell us to shelter in place, the isolation and the fear that that conjures is really terrible. But what about the people who have no shelter to shelter in place in? My hope is that we will start to think about that, and I think it could really change.
One thing that's changing mental health care is tele-psychiatry. I think that's one of the silver linings, if there is any in this crisis that, something like tele-psychiatry will democratize and increase accessibility of, and increase the dialogue of mental illness in general. Another silver lining is that we are actually decarcerating people. We're putting elderly people in prison, and people whose only crime is that they have a serious mental illness, which causes them to do petty crimes, and then petty crimes add up, and then they don't show up to their probation officer and lo and behold they end up in jail. This is a waste of taxpayer dollars and it's a waste of human life. I'm an optimist and I think this is a wake-up call for us. And I think that that wake-up call can extend to those who are struggling even more so than we are.
"Bedlam" airs beginning April 13 at 10 p.m. on PBS' "Independent Lens."
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