I first became interested in the film Bedlam, which debuted on PBS’s Independent Lens last month, as a documentary about the mental health crisis in America: the abandoning of the seriously mentally ill in jails or on the streets, overcrowded psychiatric emergency rooms which can only perform triage on patients desperately in need of long-term care, and the ways in which race, class, and our broken healthcare system seriously jeopardize the lives of the most vulnerable. I learned that the filmmaker was a psychiatrist who had been drawn to his profession by his sister’s schizophrenia. It wasn’t until I watched the film that I realized I knew the psychiatrist personally, and had, in fact, been just upstairs over a decade ago when he had to make some difficult phone calls about his sister’s care.
The filmmaker, Ken Rosenberg, is the father of my high school boyfriend: since we’d last crossed paths, Ken’s sister Merle had passed away and I had been diagnosed with bipolar disorder. It’s fair to say that we both have skin in the mental health game while being, by virtue of numerous social privileges, almost entirely removed from the realities of the interview subjects in Ken’s film and his book by the same name. In Bedlam, Ken profiles marginalized people with bipolar, schizophrenia, and addiction issues who cycle out of short-term hospital stays only to find themselves homeless or incarcerated. He followed their lives over the course of five years: some were able to recover with the support of family members while others remain trapped in the cycle. The film and book argue against our abysmal healthcare system, the numerous structural inequalities which aid and abet mental illness, our racist criminal justice system, and perhaps most controversially, the preservation of the personal autonomy of the seriously mentally ill at all costs.
While I knew from reading Bedlam that Ken and I both want community-based living solutions, dignity, and self-determination for the seriously mentally ill, I was eager to explore the paths we both took to get there. Ken is a psychiatrist who has experience caring for a sister who was disabled by schizophrenia and I am a layperson who has experience with mania, depression, and psychosis. One of us has by default a certain authority, cache, and presumed neurotypicality in the mental health world, while the other is a patient whose next episode could put them at risk of losing their civil liberties in order to get help. I spoke to Ken to trace the divergences and convergences in our thinking on the topics of mental illness, doctor-patient relationships, and psychiatry, among other things.
—Rebekah Frumkin
THE BELIEVER: The story of your sister Merle really seems to have been the genesis of this project—of your career, in fact—and you make that quite clear in Bedlam. I was struck by this because, with maybe the exceptions of clinical psychologist Kay Redfield Jamison, who has written about her bipolar disorder, and Elyn Saks, the professor of law and behavioral science whose autobiographical writings on her schizophrenia you describe in your book, I’m not accustomed to authority figures in the mental health field such as yourself coming clean about their own trauma. Can you tell me a bit more about interweaving the personal with the clinical in Bedlam?
KEN ROSENBERG: I love the question because the answer is sort of poetic in a way. I became a psychiatrist and made films about people with schizophrenia and bipolar disorder largely because of my experience with my sister. That’s what’s propelled everything I have done since I was fourteen. When I was in medical school, for instance, I was going to cut up a rat brain or something like that and I thought, No no no. I really want to do something more psychiatric. And oddly enough the more psychiatric thing was to study filmmaking because being a filmmaker is more like being a psychiatrist than being a first-year medical student cutting up a body.
BLVR: Documentary filmmaking is about finding and telling stories, right? And telling those stories as accurately as possible?
KR: Yes, exactly. So really I could say right from the beginning, everything about my career has been informed by my sister and her illness. And at the same time, for such a long time, my sister’s illness was something I would never talk about.
BLVR: You do mention that in your book, that stigma. I’m thinking of the scene where Merle jumps out the window while she’s suffering delusions and your parents spin a cover-up story about her having jumped out to avoid an assailant who broke into the house.
KR: It was exactly that kind of thing—shame, maybe, and frustration over how my family handled her situation—that kept me from mentioning a word about my sister. But when I was editing this film I realized [her story] was, sort of, the great missing link. I’m sure you’ll appreciate this as a writer: something was lacking, you could feel something was lacking. What was lacking was why I was on this quest to understand serious mental illness. And that “why” was the shame and tragedy my family endured.
BLVR: What was the actual nuts-and-bolts process of building memoir into a book that is otherwise clinical and journalistic in nature?
KR: Well, we go to Martha’s Vineyard in the summer. I kind of locked myself in a barn, quite literally, and started adding myself into the edits for the book, adding my own story. That gave me permission to talk about something in my life I had barely talked about before. It made a better film. It made a better book.
BLVR: I remember when I first read about this project and reached out to you, I was classifying myself as someone with serious mental illness because I had read that bipolar disorder fell under that umbrella and I thought, Oh, I have that. But as I read your book, I realized that I have the privileges of being able to work, being able to pay rent and bills, being able to stay out of the hospital, which can’t be said of any of the people you interview.
KR: Like Johanna. We met her when she was manic in the ER and she was struggling to hold down a job and finish school.
BLVR: Right—my heart really goes out to her. And I’m thinking about how, for me, the stakes feel lower, which is possibly illusory. I like to philosophize and argue. I have this great psychiatrist, really patient guy, and I was putting him through the wringer last summer, just arguing with him about the medical model of mental illness. I was seeing him as someone who has a very materialist approach to things—a broken mind is like a broken leg, etc.—and seeing how he and I had very different relationships to the mind-body problem. He’s seeing mental illness as something that can be known, assessed by a series of diagnostic criteria, and treated with medication, whereas I’m having this lived experience that is diverse and vast and requires a whole lot of first-person testimony to even begin to understand. Medication and therapy really just scratch the surface of the problem—though, as I said, the disorder hasn’t become as problematic for me as it has for many of your interview subjects.
KR: It’s a matter of access to resources.
BLVR: Yes and my access is total, I’ll be the first to admit. I’ll admit, too, that my current psychiatrist isn’t the first one I’ve bothered with this problem. And every time, I’m wondering what kind of neutral, neurotypical façade these professionals need to maintain, what kind of limitations they need to impose on their own beliefs in order for this patient-doctor relationship to work.
You’re someone who’s trying to go against the grain, to take this more humanistic approach, to self-disclose about Merle. Is this something you’re incorporating into your practice as well?
KR: Well, I think it’s a very complicated question. Because on the one hand you don’t want to bring your shit into the room with the patients. As a psychiatrist I exist in my patients’ lives for one reason only, and that is to be therapeutic. But on the other hand, my own self-disclosure might prove therapeutic for patients. So if it’s therapeutic for me to talk about my sister, or therapeutic for me to talk about my fears, or therapeutic to talk about something that may make me vulnerable—that’s a good thing. But the reason I talk about these things has to do with psychotherapeutic technique. As in, the only reason I bring it to the conversation with my patients is because it’s going to help my patients.
BLVR: Sure, but what’s therapeutic for one patient may not always be therapeutic for the next.
KR: Yes, I think that’s right. I think, though, as a rule, patients aren’t paying you to come and hear your story. But I think that you’re also suggesting something else here. You’re saying when you go to your therapist they have to put on a façade as if they’re sort of normal and together and realistically, that’s no one’s lot in life. Everyone has dark moments and anxiety moments. And the way that relates to Bedlam, of course, is that I’m revealing things about my family that I wouldn’t necessarily reveal in a therapeutic room, in a consultation room, right? I do sometimes tell people about my sister—now especially—but only do so because it’s going to be therapeutic for them. But now, someone will come to me, they’ll have read my book, they’ll have seen my film, they’ll know more about me than my girlfriend knew about me, you know, three years ago [Laughs].
BLVR: Right.
KR: And that’s kind of weird, but I think you’re also suggesting there might be something really refreshing about that, that when you go to a psychiatrist you realize they’re a person too. There also is something counterproductive, a kind of third dimension to this question, to making pretend that you have it all together. That’s like the kind of guru approach to psychotherapy: I’m the all–powerful Oz. I am the person to bestow wisdom onto you. And that’s actually counter-therapeutic. We as human beings gravitate toward that, but I don’t think that’s very helpful.
BLVR: I want to add that there are very porous boundaries between “well” and “unwell.” Maybe the gloves are coming off now, I’m posing a bit of a challenge to traditional psychiatry. In Madness and Civilization you can read about all kinds of people being locked up in sanitariums in eighteenth century France, people who were suffering delusions and people who were just poor. You can do a Google search and see that homosexuality was listed as a disorder in the DSM until 1974. I think we’ve had a lot of all-powerful Ozes telling us whose behavior gets pathologized and whose doesn’t, a lot of dehumanizing of people with mental illness—of people in general.
KR: I talk about Harry Stack Sullivan in both my books, Bedlam, and this other book on infidelity. Sullivan was a psychoanalyst in the 1950s, but kind of the father of humanistic psychiatry, and he dealt with really sick people. One of the many brilliant things he said, which I’m going paraphrase, is that when you see an ill patient, always realize that person is more like you than different. And it’s not just a nice thing to say. It’s actually really true and the barriers between “normal” and “abnormal,” “insane” and “sane,” are—I don’t know, what’s a good way to put this? They’re porous, as you said.
BLVR: Right.
KR: Certainly, when someone gets to the point of hearing voices and being utterly dysfunctional, they’ve gone to some other place. But if your point is that it’s very damaging to say that there’s “sick” people and “well” people, I couldn’t agree with you more. I think that’s very, very damaging. And I think that’s one of the dangers of diagnoses. It implies there’s a bipolar person, a schizophrenic person, so forth and so on. Which is actually not only damaging but it’s scientifically incorrect. This kind of hierarchal, exclusionary way of looking at human beings is really a false binary and it’s stigmatizing. I appreciate you saying it’s a challenge, but I don’t think we have any disagreement here.
BLVR: The only reason I framed that as a challenge was because I don’t see psychiatry as medical. I don’t see it as behavioral. I see it, when practiced at its best, as humanistic.
KR: Yeah. It’s philosophical.
BLVR: I keep going back to Foucault, that description of the classical psychiatric doctor buying into the patients’ delusions. The man who doesn’t think he has a head. Well, put the weight on his head, and he realizes he has one. Or, the man thinks he’s dead and he doesn’t want to eat, so you dress up as a ghoul and eat a feast in front of him and he’s like, Oh, the dead do eat, and it saves his life.
KR: Yes.
BLVR: It’s emotional, metaphysical, epistemic. And when you were making Bedlam, you were talking to Todd, who has bipolar; Monte, who has schizoaffective symptoms; Debbie, who has schizophrenia; Johanna, who has bipolar—you followed these people for five years. If you had unlimited time to follow them and tell their stories, what would you do? How would you apply these humanistic principles we’ve been talking about, challenge the medical model?
KR: I would like to be with their parents. Todd had foster parents and I thought about interviewing them. There’s not unlimited space in the book. And, certainly, the film—we probably expanded it far beyond a reasonable limit, frankly. So, I couldn’t know what Todd’s early life was like, his conflicts. But that’s what you do in psychiatry, you want to know someone’s entire lifespan and all their relationships and all the interwoven pieces from their culture. So, I mean, that’s what I would want to do. But I don’t think that it’s correct to say I want to challenge the medical model.
BLVR: Okay.
KR: I think I want to question the medical model.
BLVR: Sure.
KR: Because I do believe, of all the models for treatment of mental illness, it’s the best one, but it’s very limited. And I’m not the only one who believes this. You can get so caught in it that you start to believe psychiatrists are the biologists of the mind.
It is, I think, very dangerous.
BLVR: Yeah, I would agree.
KR: They think these medicines you have to offer are cures and [they] don’t realize how things are changing constantly in nosology and diagnosis, in therapeutics and medication. I think that’s the art of being a really good psychiatrist. When you’re a surgeon you don’t say, Shall I cut this artery, or shall I not cut this artery? Let me think about this. You have to make a decision. As a psychiatrist I believe you should still be questioning the medical model. But I still believe it’s the best one there is. I believe the psychoanalytical model is the best working model we have of the mind, but it’s really messy, really flawed. So, always question these things.
BLVR: What did other psychiatrists think of the project?
KR: Psychiatrists love this film, believe it or not. They love the book because it really says we, as a profession, have abandoned our sickest people. I try to say it in a way that’s not a criticism, but a fact. Like: What do you expect? Everyone else abandoned them. No one pays us to take care of them, so of course we abandon them. But we abandon them and that’s not right.
BLVR: I’ve heard of people who have the financial means to pay psychiatrists and because they’ve had a certain amount of suicide attempts and whatever background, certain psychiatrists will say, Hey, I can’t work with you. You know what I mean?
KR: Yeah.
BLVR: The liability is too great. The insurance payout is far too little. To me, I think that model becomes extremely dangerous.
KR: I don’t think the problem is with psychiatrists. If you go to the post office and they say: Hey, we can’t mail your letter because you didn’t give us forty-three cents, it’s not a problem of the postal worker. It’s a problem of the postal system.
BLVR: Of the whole system, yeah. Your argument for the single-payer universal health care I fully endorse, fully cosign. I’m curious, though—I wanted to ask you about the IMD exclusion. You’re in favor of lifting it, right?
KR: Yes.
BLVR: Can you tell me a little more about that?
KR: The asylums were really terrible. They were dreadful. They didn’t deserve to exist, but I don’t think we did any people any favors by completely tearing them down. Kennedy’s idea [when he signed the Community Mental Health Act in 1963] was to take people from the asylums into what he called the “welcoming arms” of the community, which was really naïve. The community wasn’t really welcoming, and they weren’t prepared, and they never are. What emerged was a health system that was half-baked. It didn’t take care of its sickest people. It lasted as long as the funding lasted, which went for another fifteen years and then when Reagan was president, he put the death torch to that. I think the asylums weren’t a great place, but they didn’t deserve to be abolished.
The exclusion came about in the Johnson administration. The Johnson administration developed public assistance, barely funded medical assistance, and they wanted to disincentivize the creation of big asylums. They didn’t want asylums to come back in the present form. So, they had this exclusion that federal money, Medicaid money, would not pay for a hospital with more than sixteen psychiatric beds.
BLVR: Right.
KR: Which at the time made sense. You had big state hospitals, [and] they were tearing those down. They were going to move more toward community mental health care and smaller hospitals, which is a nice idea, but again, it’s throwing the baby out with the bathwater. In Los Angeles, they wanted to build—I think our film actually helped them not build it—a jail, a “mental health jail,” which had thirty-eight hundred beds. So the IMD exclusion can’t pay for more than sixteen beds. But LA was trying to build a jail with four thousand beds. That’s why the IMD exclusion doesn’t really make sense. We don’t want to bring back big institutions. We don’t want to bring back big asylums. We don’t want to bring back dreadful places. But we certainly, given the choice between a four-thousand bed jail and a whole bunch of twenty-five bed psychiatric hospitals, it’s a no-brainer. Right?
BLVR: And these would be long-term psychiatric hospitals?
KR: No, it’s not for long-term. A general hospital now is not allowed to have—unless they have the exclusion, and many hospitals and states are trying to get the exclusion, California being an example—cannot have more than sixteen beds in it that are dedicated to psychiatry, and collect Medicaid reimbursements, unless they have this special exclusion. This has nothing to do with long-term care. It has to do with hospital beds and we have a fraction percent [sic] of the beds now that we once had in 1950.
It’s not like mental illness went away in the past seventy years. We have two or three percent of the beds we had then. Obviously something is wrong. Especially when mostly people with mental illness are living in the streets and in jails.
BLVR: I’m wondering now about long-term care. For someone, perhaps, like Merle, or like your friend’s son who died in the hotel room.
KR: I think, right now, these are chronic diseases. If someone is super sick they require ongoing care. I think that we’re very slow to recognize this and it’s actually politically incorrect to say that, but there’s probably a lot of people [who] need to be institutionalized for life. A psychiatrist, Dr. Dixon, who’s in the book—her brother is in a long-term institution because she’s had the wherewithal to get him into one of the few state hospitals [that are] still left. A lot of people still need that. A community model is better. There [are] good community models—in the book I mention the community for the severely mentally ill in Trieste.
BLVR: Yes.
KR: We need some kind of combination. I think we need more community services and we need asylum services. I don’t think we should silo people with mental illness, like some big building on a hill somewhere. I don’t think that’s the solution. I’m really more in favor of community mental health than hospitals. But what I am not in favor of is the ignorance that perpetuates the suffering of people in jail and in the streets, and not talking about the illnesses. Right now, you and I are talking about brick-and-mortar solutions.
BLVR: Right.
KR: And I think those solutions will evolve over the course of every century. Really what we need is better treatment. These are illnesses that require treatments. These are also illnesses perpetuated by social ills. So a brick-and-mortar solution is not going to solve poverty, it’s not going to solve substance abuse, it’s not going to fix a brain disease. It’ll give you a better place to house people, but those are inadequate solutions. You really want to deal with the root causes of the disease.
BLVR: I’m thinking about how mental illness and addiction are inextricably bound up with these policy issues and these issues of structural inequality and late-stage capitalism. To me, it feels like even more evidence against this strict materialist approach of: Hey, it’s just not enough serotonin. Or: Hey, it’s just too much dopamine. Right?
KR: Right. No, totally. I think the accurate way to say that is that there are dopaminergic and serotonergic fixes, not cures, but adjustments to be made that could help people. Giving someone more dopamine or more serotonin, or less dopamine, or whatever the antipsychotics do, is not a solution to the social, cultural, biological issues.
BLVR: Yeah. I agree. I guess what we’re talking about is community models. Perhaps I’m dwelling too much on the brick-and-mortar here, but I’m wondering: when we’re talking about a long-term living setting or housing setting—how, to your mind, would that be structured? I don’t mean to try to sound utopian, like we’re going to solve this massive social problem by building this flawless community for people with serious mental illness. But, how could that be structured to address some of the issues we’re talking about?
KR: Well, a big issue is substance abuse. When you’re struggling with substance abuse, whatever psychiatric issue you have is just running the show. You have no shot at getting better, in my opinion, if you’re still strung out on coke or heroin. Or even weed for people who are vulnerable. So I think you need a multi-pronged approach to deal with substance abuse not only as a disease but also as a social ill. What would be the perfect solution, I think, would be if an administration recognized structural racism, economic inequality, the need for universal healthcare, and the fact that there are biological illnesses that arise in these contexts and maybe even as a consequence of these social ills.
BLVR: Hm.
KR: Then I think you need a structure which provides long-term care and community healthcare, but which prioritizes mental health care. Right now we don’t prioritize it. It’s not a question of money—we spend a lot of money on jails, we spend money on emergency rooms. In terms of research money, we spend five billion dollars, six billion dollars, on cancer, and the NIH allocates just five hundred million to serious mental illness. We have to prioritize this care so we can build the appropriate institutions, both outpatient and inpatient, community mental health services, and hospitals for people who just can’t live on their own.
BLVR: Who of the people you interviewed would most benefit from these services?
KR: Debbie is a great example. She goes in and out of jails, in and out of relationships. Todd’s a good example, too. Todd and Debbie probably need to be in a place where there’s long-term institution. Monty and Johana have gotten better because they have relatives who’ve basically conserved them, which is a fancy way of saying “committed them,” to care. Not in institutional care, but the care is ongoing. I think, again, that’s a hard pill for us to swallow—it’s not politically correct, it’s not humanistic—but there are some people who really can’t care for themselves. There are a lot of people who are suffering now who could care for themselves if given the right instruments, which they have in Trieste: universal healthcare, no drug epidemic, strong families, 24/7 community mental health centers.
BLVR: Right. This brings up the question for me of personal autonomy. How do you, a psychiatrist, address the autonomy of another human being and avoid painting them as a victim of their illness? Right now, the system isn’t set up in the self-determinative way it’s set up in Trieste. It’s set up in such a paternalistic way, where the psychiatrist deems the person unfit to function—in danger of self-harm or harming others—and sets in motion this institutional sequestration, this removal of personal autonomy. And that’s often the only way the person can get help.
KR: When I was about to graduate med school, I asked my friend who was getting a PhD at Harvard, How do you know if you’re committing plagiarism? And his answer was: If you think you are, you are. [Laughs.] If you have to ask the question, you are. Now, that might be a glib answer because some people do a lot of things without thinking. But I think the only way you could do this properly, find that sweet spot between preserving personal autonomy and letting people die on the streets, or die because of their disease, is by being aware of all the factors. Just like what we were talking about before: What makes a good psychiatrist is not that they don’t endorse the medical model, but that they constantly question it.
BLVR: Right.
KR: I think you have to question it. You have to see what is in the best interest of the patient and what is in the best interest of society, and how might I be doing what is most expedient. It seems, for instance, many people argue the humanistic thing to do is to let people live how they want to live. But, to me, that’s a complete cop-out. If you see that guy on the street and you think, I’m not going to bother worrying about that person. They’re entitled to live their life as they want to live it. They’re not trying to kill anyone. They’re not trying to kill themselves in the moment. I can let them live. That’s truly a cop-out. It seems like the liberal [and] humanistic thing to do. But, to me, it’s actually terrible because you’re saying, I don’t want to be bothered. Doctors do that all the time. They get someone in the emergency room, a family member calls, and the doctor says, I can’t talk to you because I don’t have permission from the patient. Well, they could try and get permission. There are probably ways in which they could talk to the family member, but it’s the easy way out. It seems as though they’re protecting their patient’s civil liberties by not violating HIPAA, by not talking to a family member, but they’re really just taking the easy way out. So the best answer I can give to your question is that we must be cognizant of all these things and not try to take the easy way out. That’s when we fail, when we say: Oh, they should all be locked up. Or: They should all be set free, without thinking about all that’s involved.
BLVR: For me, that answer ramifies in a number of ways, because, were it not for a certain set of social privileges, I could be among that they. Do you know what I mean?
KR: Yeah. Maybe if you were on the streets, exposed to drugs, had no family, had repeated trauma from being in jail because that’s the only place where you’d get your treatments.
BLVR: Right. That’s the way someone’s mental health can really deteriorate. I’d like to go back to this idea we were talking about earlier, about the boundaries between the well and the ill being extremely porous, and ask a personal question. As someone who has serious mental illness in his family, who has his own set of neuroses and concerns, do you see yourself as capable of being part of that they?
KR: Yes, of course. Oh my god. If I grew up like Todd, ended up homeless, if my neuroses were treated in jail like Monte’s, of course. I don’t know that I would do as well as they have done. I don’t think I see it as just an act of biology. A lot of it is biology at a certain age, but it’s very complicated, or very influenced by a lot of factors.
BLVR: In the past I really have met psychiatrists who endorse this kind of paternalistic patient-doctor relationship, who maintain this authority that they could never be part of that they.
KR: Patients are more similar to us than different, no matter. And if we lose that, we lose our ability to help them.
BLVR: What do you think about giving people with serious mental illness the opportunity—because it’s so rarely given to people with serious mental illness —to intervene and engage in their treatment and decide what kind of treatment they should get?
KR: Yes, they should.
BLVR: What would that look like?
KR: Well, that should happen all the time. When someone is in the throes of a psychotic episode they can have anosognosia, which is when you don’t know you’re sick. That’s part of being psychotic, you’re out of touch with reality. One way to give the psychotic person a say in their treatment is, when they’re sane, to say What is it you want, and what is it you don’t want? And [then] respecting that. I don’t think people could get too well if they’re not respected. I don’t think they could get too well if they don’t have agency in their care.
BLVR: I agree. I’m wondering what if that kind of psychiatric advanced directive included unconventional treatments? Like, what if I say, If I have delusions, I want you to participate in those delusions?
KR: I think I would be open to that.
BLVR: Yeah?
KR: Yeah. It’s a relationship, so it has to be reciprocal. Some people want me to prescribe homeopathic medicines, but I only know about a few of them. I say: I’m not against that, but it’s not something I’m trained in. You know, being a western doctor.
BLVR: Right.
KR: So if you want us to go out dancing together, that’s not what I do as a psychiatrist. In fact that violates some ethical principles that I’m bound by. It can’t be something like, If I get sick again I want you to take off your clothes and run around the block. [Laughs.]
BLVR: [Laughs.] It would be so funny that people might just snap out of it!
KR: That might be better, doc. [Laughs.]
BLVR: Right, right.
KR: That’s not what I’m trained to do, you know.
BLVR: Right, sure. There’s a limit.
