At the age of twenty-two Sera Davidow was committed to a mental hospital. She had been harming herself since her teens and had accumulated a half dozen or so psychiatric diagnoses. In the hospital she was prescribed psychiatric drugs and monitored as a suicide risk, but the treatments only made her feel worse. Eventually she stopped taking her medications. Rather than accept who doctors said she was, she would decide for herself.
Davidow came to reject the idea that what was happening to her was a result of a chemical imbalance and attributed it instead to the trauma of childhood sexual, physical, and emotional abuse. “One reason I avoid calling myself ‘mentally ill,’ ” she explains, “is that it erases my past trauma. If you’re saying what’s wrong with me is about a disease in my head and not about these people who hurt me, you’re basically giving them a free pass.” She went on to work for a mental-health agency, but when she publicly revealed her psychiatric history, she was let go.
Around that time, in the mid-2000s, the state of Massachusetts was looking for innovative ways to treat mental illness and offering grants for “peer-based” programs run by former patients. Davidow had already been talking with some fellow veterans of psychiatric diagnoses and hospitalization about creating alternatives to mainstream care, and together they got a grant to found the Western Massachusetts Recovery Learning Community (RLC). As the organization’s director, Davidow is a tough critic of the bureaucratic and impersonal aspects of the mental-health system, which she believes too often uses force and coercion to control people and suffers from a “one-size-fits-all” approach.
Through its three centers and a variety of other resources, the RLC (westernmassrlc.org) lends support to those who are having what Davidow calls “extreme states” — suffering emotional distress, hearing disturbing voices, having suicidal thoughts, and so on. In a group called Alternatives to Suicide and another called Hearing Voices, people assist and learn from each other without the involvement of doctors or clinicians. Davidow says the absence of a medical authority allows participants to define their own experiences: “We should be open to many answers, even ones that sound strange. Who cares if someone believes the voices they hear are coming from aliens, as long as their life is working for them?” The organization also provides free access to alternative healing practices, operates a house for people in crisis who are trying to avoid hospitalization, and offers trainings and educational materials, including two films: Beyond the Medical Model and The Virtues of Non-Compliance.
Several years ago, wanting to learn more about Davidow’s work, I spent the better part of a day sitting in a large living room with her and others involved with the RLC. They were a diverse group — male and female, wealthy and poor, straight and gay, young and old — but all talked about how the organization had helped them through difficult times in their lives. I came away feeling I had witnessed something extraordinary.
A writer, filmmaker, and mother of two school-age children, Davidow has a blog at madinamerica.com. She and I met for this interview at her high-ceilinged office in Holyoke, Massachusetts. Sunlight streamed through the tall windows as we talked for nearly four hours about the phenomenon most people call mental illness.
SERA DAVIDOW
Frisch: You established the Western Massachusetts Recovery Learning Community to be an alternative to the mainstream mental-health system. How is the RLC different?
Davidow: We support people using knowledge we’ve gained through our personal experience. Everyone who works as an employee of the RLC has moved through some sort of life-interrupting challenge: trauma, homelessness, problems with substance use, psychiatric diagnosis. We know how the mental-health and other societal systems can help as well as how they can hurt. We share those lessons with others, we’re curious about people’s stories, and we also just listen. Too often when no one listens, people are lost.
Frisch: How does the mental-health system end up hurting people instead of helping them?
Davidow: It starts with the way healthcare providers, because of liability concerns, have been trained to take responsibility for people who have a psychiatric diagnosis and to make decisions for them. A colleague of mine, Earl, talks often about his time in the mental-health system, during which his “team” would talk about him when he wasn’t present, not listen when he was, and decide where he should go and what his goals should be without ever asking his opinion. His “team” never acted like they were actually on his side. This is a common and demoralizing experience.
Doctors are also trained in antiquated clinical thinking, such as the idea that talking to people about the voices they are hearing serves only to “encourage” the voices and is likely to make things worse. When clinicians treat someone’s voices or visions as if they have no meaning, it can confuse and silence the person. I also know many people who’ve been told either that they are too fragile to discuss the traumas they’ve been through, such as childhood sexual abuse, or that those traumas simply aren’t real and are a product of their illness. And clinicians are trained not to share anything personal about themselves, which serves only to enhance the sense that one person in the relationship is whole and the other is broken.
The demands placed on clinical providers are intended to keep people safe, but the fact is they drive many providers to take action when they should be listening. There’s a quote by, I believe, disability-rights activist Pat Deegan: “Help isn’t help if it isn’t helpful.” The system seems to have lost sight of that.
Frisch: You’ve been critical of long-term use of psychiatric medications, but many would argue that people with certain diagnoses, like schizophrenia, should be treated with drugs, at least in the short term.
Davidow: I’m not arguing against psychiatric drugs completely. I know someone who occasionally finds it helpful to use the antipsychotic Risperdal for a couple of weeks at a time. Risperdal is rarely prescribed for just a couple of weeks, though, and most doctors will encourage continual use — a fact that has made this person reluctant to ask for a prescription, because they don’t want to be forced to take it long term. If they take it too long, it makes them start to shake, which can be a sign of brain damage. How helpful is that?
Frisch: What percentage of people appear to be helped by psychiatric medications?
Davidow: Most research I’ve seen says around 20 percent do better on psychiatric drugs long term. Now, what “better” actually means is up for debate. Some studies use bizarre measures, like whether people get married. Very rarely does “better” mean doing great. And you have to take into consideration that 80 percent of people are not doing better. Yet close to 100 percent of people in the system are encouraged to take drugs, and many of them do.
Frisch: Is the information in these studies just not reaching decision makers?
Davidow: A lot of marketing and business forces are at play. It would not help the pharmaceutical industry — or, frankly, the psychiatric industry — for the status quo to change. Drug companies play up the fear angle: the public is scared that a troubled person might go shoot someone, and no doctor wants to be responsible for taking a person off medication right before they commit an act of violence. But the research does not suggest that people with psychiatric diagnoses are likely to be violent. And if they are, it doesn’t mean that the diagnosis was the cause of the violence, because members of all groups can be violent.
Frisch: Let’s say someone comes to you talking about hearing voices or suicide. How do you respond?
Davidow: I’ll tell you what we don’t do: we don’t call the person’s doctor, or dial 911, or drive people to the emergency room. We ask what’s going on for them — not what’s “wrong” with them or if they have been given a diagnosis. If they do mention a diagnosis, we ask what it means to them. If they talk about voices, visions, suicidal thoughts, or injuring themselves, we meet this with calm curiosity. We’ve found that what helps people move through such feelings is being able to talk openly about them. Unfortunately many people don’t talk openly in clinical environments for fear that alarms will be sounded.
The RLC is a community in which to redefine yourself; to be around people who aren’t using language that locks you into a medical diagnosis; to talk about taboo topics without the threat of hospitalization or scaring away friends. We believe that the most important tasks are building a life that’s worth living, making meaningful connections, and finding communities to join. When that happens, many problems naturally become smaller.
Frisch: Your organization runs three centers where people can seek help as an alternative to a hospital psychiatric ward. How do these centers differ from “drop-in” programs for people who’ve been deemed mentally ill?
Davidow: For starters our centers receive much less funding. They’re also free. And there’s no red tape involved. Anyone in need can access a center’s resources without ever filling out a form or coughing up a diagnosis. Most drop-in programs require a referral from a doctor. Because of this, they serve only individuals who’ve been given a diagnosis and put on psychiatric drugs. They miss people who have refused to see a doctor because they are trying to avoid ending up in the system, and also those who have been struggling for a long time in another system: the homeless system, the substance-abuse system, and so on.
There’s a history of drop-in centers for people with psychiatric diagnoses being just places where we keep each other busy: we drink coffee, maybe share coping skills, get some social interaction, and make a friend or two. And there is value in all that, but it’s a pretty low bar that wouldn’t satisfy most people out in the world. Of course, the assumption with these sorts of spots — and with the RLC, too — is that because those who work there are labeled “mentally ill,” people will still need to go to the mental-health system for real treatment. But that sort of attitude dramatically underestimates the power and potential impact of what we have to offer.
Frisch: So your emphasis isn’t on teaching people coping skills?
Davidow: No, though that can be a piece of the puzzle. Our work aims to encourage genuine human relationships, respect, personal strength, self-determination, and optimism — which is often the hardest one for people to understand. We believe that all people have potential. Even when we have to ask someone to take a break from our community, there’s still the potential for that person to come back later. But we don’t promise that it gets better. That would be disingenuous.
Many professionals seem to fear that all we do is tell people to stop therapy, ditch their psychiatric drugs, and go wild. We don’t. We just want the people who come to us for support to be able to move past whatever is getting in their way and go on with life rather than get stuck in a mental-health bureaucracy. At the very least we want people to understand what resources the system offers and how to navigate getting support that will actually be helpful to them without becoming lost. Once you’re in the system, you’re often shown only one path: psychiatric drugs. And if the drugs are used for too long, the results can be worse than no drugs at all.
In 1979 the World Health Organization compared outcomes for a schizophrenia diagnosis in westernized nations with those in less-developed countries. They found a correlation between our way of “helping” in the West and a lack of recovery. Outcomes were best in rural India, where almost no one was being put on long-term psychiatric drugs. Follow-up studies have found that outcomes have now equalized among the countries originally studied, apparently because the West has exported drug treatment around the globe.
Martin Harrow, researcher and professor emeritus at the University of Illinois at Chicago, suggests that individuals labeled “psychotic” initially appear to do better when given psychiatric drugs, but in the long run people who do not take drugs are the clear winners in every category measured. If you really want to understand why drugs are a barrier, go into any psychiatric hospital or residential program; you’ll see people who have difficulty functioning due to the medication they are taking.
Yet drugs are still practically a requirement of treatment. If you’re on Social Security for reasons related to a psychiatric diagnosis, you can abruptly lose your benefits if you choose a path other than drug treatment, because the lack of a prescription will be viewed as proof that you are no longer “sick.” Housing assistance can be similarly fraught with rules and limitations. Many people become terrified to move forward, because at least if they stay in the system, they know these basic needs are being met.
Frisch: You say people having extreme or unusual experiences need to know they have a choice in how to respond to them.
Davidow: If clear choices aren’t available, any path can feel forced, which leads to learned helplessness and hopelessness.
Some choices are financially out of reach to many. That’s why we try to make alternative healing practices like yoga, acupuncture, and Reiki available for free. Most people simply wouldn’t be able to give these a try otherwise. In England doctors can prescribe exercise for depression, stress, or anxiety, because it’s been found to be more effective than some drugs, with fewer negative effects.
At the RLC we don’t create structured environments in which everyone is expected to do the same thing on a given day. People can choose to be a part of our community in any way they want, for any length of time they want. Self-determination is vital. If someone believes his or her distress is caused by something biological, or by past trauma, or by a spiritual emergency — or some mix of all three, or anything else — who are we to disagree? It doesn’t matter whether we fully understand their beliefs. What matters is how their beliefs affect their life.
We don’t rule out the use of psychiatric drugs, either, if someone is fully informed and chooses them. It’s not our job to tell people what they should or shouldn’t do, or what does or doesn’t work for them. That sort of approach can be exactly what stamps out someone’s sense of self and confidence in their own ability to make decisions. People have had enough of that.
Joanna Moncrieff, a psychiatrist based in England, speaks of a different approach: Rather than saying that someone has a disease and then prescribing drugs that “treat” that disease, we could just accept that drugs sometimes make people feel or function better, even if only for a period of time. Pharmaceutical interventions then become a choice rather than a foregone conclusion. This perspective also does away with the need to try to convince people they have a “chemical imbalance” that requires drugs to correct — proven to be a myth at this point. Why not just admit we don’t know the full cause much of the time and focus on whether or not we like the drug? Take caffeine, for example: Some people like the effect caffeine has on their body, but that doesn’t mean they have a caffeine deficiency in need of treatment. It means that they like the effect of the drug, and they can choose to use it or not.
Frisch: Why is it important for people’s extreme experiences to be regarded as meaningful instead of as symptoms?
Davidow: Because they are meaningful. When my co-worker Marty Hadge first came to a Hearing Voices group, he had been in and out of hospitals, and doctors had said that the most he could hope for would be to stay out of the hospital for a bit longer next time. But after coming to our group for a year, he began to see what his own voices and visions and experiences meant for him, including how some of them related to past trauma. He is now one of the leading Hearing Voices trainers in the country.
Frisch: What should we do when people reach out for help, but their experiences seem frightening and inexplicable to us?
Davidow: There’s no easy answer. Responding to people who are doing or saying something that frightens us requires us to stretch.
There’s a scene in Daniel Mackler’s documentary Healing Homes in which the filmmakers talk to a farmer in Sweden who is hosting someone going through extreme emotional states. The farmer admits it was uncomfortable at one point to see his guest crawling around under the table. But, he says, if that’s really the worst thing he’s doing, then so what?
We need to ask ourselves, “So what?” more often. I frequently encourage people to sit with their own discomfort and consider whether their reaction has more to do with their own fears than with what’s happening. Sometimes a person’s behavior only feels threatening because it’s unfamiliar.
Frisch: What about people who lash out or behave in ways that might be harmful?
Davidow: If someone presents a real threat, I’ll have a conversation with that person about how what they’re doing is hurting others. In my experience it’s rare for anyone to be in such an extreme state of mind that they can’t understand the need to respect the community and the space around them. Too often we treat people as if they were too fragile to be challenged or to take responsibility. It becomes a self-fulfilling prophecy. Approaching people as if they are capable creates an environment in which they’re likely to live up to that standard.
Sometimes a person may be moved to violence because we expect it of them. I’ve heard stories of orderlies standing by in case someone “needs” to be restrained, and the sight of these large men circling up is exactly what leads to violence. So much coercion occurs under the guise of keeping everyone safe, but I challenge anyone to ask people who’ve experienced this in hospitals if “safe” is how they felt there. The reality is that where violence is regularly used to prevent violence, it appears to occur more often.
If violence is actually happening, or there is a medical emergency as a result of violence, then I will call for help the way anyone else might. But I won’t pretend it’s “treatment.”
Frisch: You’re fond of this C.S. Lewis quote: “Of all tyrannies, a tyranny sincerely exercised for the good of its victims may be the most oppressive.”
Davidow: Yes, most people can understand that taking away someone’s liberty when that person has not actually done anything illegal is wrong. Throw in a psychiatric diagnosis, however, and incarceration in a hospital becomes likely for someone’s “own good.”
A clinician will say, “Tracy is living on the streets because she doesn’t understand she’s sick. The only way to help her is to get her into treatment. You don’t want her to die, do you?” People accept that solution because it fits with the fundamental value of caring about each other. There’s also the fear that maybe Tracy is going to hurt herself or someone else if we leave her out there. Our compassion and fear lead us to believe that what we’re doing is for Tracy’s own good, even when it’s based on misinformation.
Many professionals seem to fear that all we do is tell people to stop therapy, ditch their psychiatric drugs, and go wild. We don’t. We just want the people who come to us for support to be able to move past whatever is getting in their way and go on with life rather than get stuck in a mental-health bureaucracy.
Frisch: You’ve had some personal experience with involuntary treatment.
Davidow: Yes, as a teenager I started harming myself, restricting my food intake, purging, and so on. By the time I was nineteen or so, I was drinking a lot and cutting or burning myself constantly. Everywhere I went, I felt like people were thinking and saying terrible things about me, so I stopped going out, and I got kicked out of college for poor attendance. Not long after that I was forced into the hospital for the first time and put on psychiatric drugs.
On paper I chose to go into the hospital, but in reality I’d been told that if I didn’t go voluntarily, they would force me. So I “volunteered” to avoid the ambulance and all the rest.
Force and coercion in the mental-health system take many forms: If you want job training, then you have to take your medication. If you want access to housing, you have to be part of such-and-such program, or go to meetings, or do chores, or take drugs as prescribed. If you want your cigarettes, you have to take your medication.
Frisch: Is physical force still being used on psych wards?
Davidow: “Restraint” and “seclusion” happen all the time. Restraint is when someone is held down or strapped to a bed, sometimes for long periods of time. Seclusion means being isolated in one space and not being allowed to come out.
Frisch: Are we talking about a padded room?
Davidow: It depends on the hospital. A lot of them conceal the fact that they’re using seclusion by calling it a “room plan,” which means you can’t come out of your room for days on end. They do this to evade the legal requirement to document any use of seclusion.
There’s a locked unit in Arizona that claimed to use zero restraint, but it turned out that, as long as they held someone down for less than fifteen minutes, they didn’t consider it restraint. To the person being restrained, believe me, even if it’s only for thirty seconds, it’s restraint.
Restraint and seclusion can be traumatizing, but hospitals justify these damaging practices by saying they are trying to prevent people from hurting themselves or assaulting a staff person. What we see in our work is that it’s often the institutional environment itself that leads to those behaviors.
Caroline White, a member of our RLC team since 2012, works in a local hospital as a “bridger” — someone who helps people transition from the hospital back into the community. Once, she described walking past orderlies preparing to restrain someone. She talked directly to the “dangerous” person, who was able to calm down, and the person wasn’t restrained. The hospital said Caroline shouldn’t have been allowed to do that. Another time she sat and talked to someone who was already strapped to a bed. She was there to be with the person through the trauma of being restrained, and to help them feel not alone, but she got kicked out of the room because she was supposedly in danger.
Frisch: When people go to court to protest forced medication, they rarely win. Why is that?
Davidow: Unfortunately everyone in the legal system assumes that if there is a psychiatric diagnosis, then psychiatric drugs are advisable. Most lawyers and judges are unaware that people often do better over the long term without drugs. Furthermore, judges are deciding what’s best for the community, and since the media have done such a good job of conflating a psychiatric diagnosis and violence — especially when someone who commits violence is described as “unmedicated” — it’s extremely hard to convince judges that a person isn’t a risk.
At one point I got involved in court with a woman who was in an extreme state and was going to be hospitalized because she was denying that she was mentally ill. Her defense lawyer kept asking, “Are you mentally ill?” but she didn’t want to say yes just to get out of there. When I got the lawyer to change his questions, she revealed a history of trauma.
Frisch: If people have shown that they can’t take care of themselves, should society intervene? Are there some of them who would benefit from being put into some sort of program or given antipsychotic drugs, rather than being ignored and left homeless?
Davidow: Your question assumes that the choice is either drug treatment or living on the street. There are other options. A system called Open Dialogue in Finland is getting the highest documented recovery rates in the world according to initial studies, and they avoid putting people on psychiatric drugs whenever possible. Of course, it’s not just the lack of psychiatric drugs that makes the program work. It’s meeting with people right away and multiple times per week, involving their family and friends, and so much else.
We need to invest in different ways of supporting one another. Perhaps then we can more reasonably talk about the need to intervene. Peter Gøtzsche, an internist based in Denmark and cofounder of the Nordic Cochrane Centre, makes an important point: even if we accept that some small fraction of people would be helped by forced medication, our society appears unable to use such a tool ethically. We end up hurting far more people than we help.
Nothing in the research or in my personal experience indicates that if we stopped forcing people into treatment, we would lose more of them than we currently do. In 2006 the National Association of State Mental Health Program Directors published a study titled “Morbidity and Mortality in People with Serious Mental Illness.” It found that people diagnosed with a serious mental illness were dying on average twenty-five years younger than the rest of society.
Frisch: Why is their life expectancy so much shorter?
Davidow: Some attribute it to smoking, diet, and a sedentary lifestyle, but that ignores the link between the sedative nature of certain psychiatric drugs and not having enough energy to do much. It also ignores the link between psychiatric drugs and diabetes and metabolic disorders. It’s hard to take a drug like lithium for very long without it destroying your kidneys: I’ve come across people in their twenties who are on dialysis. Suicide rates are also bringing down life expectancy, and we know that many psychiatric drugs are linked to an increase in suicidal impulses. I don’t mean to suggest that drugs alone are to blame, but they play a substantial role.
Frisch: You’ve said that thoughts of suicide do not equal mental illness. What else drives people to want to end their lives?
Davidow: Some actually want an aspect of their life to die, not their physical body, but they don’t know how to separate the two. Maybe they are in an abusive situation they can’t escape. Sometimes it’s physical pain that’s hard to live with, or their basic needs for food or a place to stay are not being met. In my area we frequently hear about homeless people killing themselves.
About 40 percent of transgender people make attempts on their lives; they have been so alienated and marginalized that it’s hard for them to be in this world.
Other people might be experiencing an existential crisis: Why am I here? Why am I bothering to do this same routine over and over?
And, as I said, a growing number kill themselves because of a reaction to psychiatric drugs. In 2014 journalist Rob Wipond cited a study that found suicide risk is six times greater for people taking psychiatric drugs, and forty-four times greater for people who’ve been psychiatrically hospitalized. This challenges the idea that keeping someone safe is just about controlling and containing that person in the moment, rather than providing ongoing support.
Frisch: Can’t we presume that in a psychiatric ward people are at least less likely to have the means to kill themselves?
Davidow: It’s easier to control someone in those environments, but people do succeed in killing themselves in hospitals. And controlling people might make them feel more hopeless.
One reason I was hospitalized is that I was cutting and burning myself a great deal, mostly on my arms but also on other parts of my body. It was one of the only ways I could be in charge of my emotional pain. Taking that ability away from me left me completely powerless. Some people with suicidal thoughts say they are able to keep living only because they know they always have suicide as an out. The very act of taking away that possibility can increase the person’s desire to die.
Frisch: How does the Alternatives to Suicide approach, which your group developed, compare with other suicide-prevention programs?
Davidow: Alternatives to Suicide is not a “suicide-prevention” approach. Suicide prevention generally puts the onus of responsibility on everybody but the suicidal person. If you express suicidal thoughts to me, I become responsible for deciding whether you’re an actual risk, and then for somehow preventing you from killing yourself. Though it’s not intended this way, the message is that your life is no longer your own. I understand the desire to convince people to stay alive, but that logic drives some of the worst uses of force and coercion.
Alternatives to Suicide explicitly states that our goal is not to control you. If you come to a group and talk about suicide, we are not going to tell you it isn’t an option, even if we’re scared you might do it. Rather than being responsible for you, we’re responsible to one another. We expect the effect of this will be to lessen the likelihood of suicide. In short, our approach is to try to create an environment where suicide is not something you want to do.
Frisch: Because you’re getting support?
Davidow: Yes, and because you’re able to talk about what’s happening and make connections with others who understand. Maybe you’ll hear something that sparks your interest and sets you on a different path.
Frisch: Are there ethical problems with not intervening when someone is planning to kill him- or herself?
Davidow: It’s perfectly fine to say to a suicidal person, “Hey, I’m not OK with your dying while I sit here,” or even, “You just told me that you’re going home to kill yourself, and there’s no way I can go home and sleep knowing that.” But that’s not forcing “treatment.” That’s being human.
Frisch: Who participates in Alternatives to Suicide? Is there a particular demographic?
Davidow: All sorts of people. We see a lot of college students. It’s common for a young person away from home for the first time and trying to make it through exams (and perhaps also holding down a job) to stop sleeping or eating well, get overwhelmed by stress, and consider suicide. Colleges do have mental-health services, but we’ve heard many stories in which someone who goes to get help is then asked to leave school, largely because the college might be held responsible if the student goes through with it. Some hospitals will automatically report students to their colleges, whereas we don’t even take people’s names.
We also see older people. Many women, but some men. Transgender people often attend our groups. We’d love to offer groups for teens, but that presents liability challenges that we’ve not yet worked out.
Frisch: Do some find that the Alternatives to Suicide approach doesn’t work for them?
Davidow: Sure. No approach is ever going to meet everyone’s needs. Some people want mainstream services because that’s what they’re used to. Some people want to be contained. But even then it’s worth asking: What exactly is helpful about the containment? Could we offer containment without all the other aspects of forced hospitalization that people tend to find oppressive? Is it possible to hold a person someplace where they can’t just walk out the door without also drugging them or defining their experience wholly through a medical lens?
Frisch: How would you define a safe environment for someone who is suicidal or having an extreme experience?
Davidow: I define it as a place where people’s basic needs are met and they can heal and grow. Environments that take my clothes away from me are not safe. I used to have a whole routine of putting on a lot of makeup. It was like a mask between me and the world. When I was locked up, I wasn’t allowed to wear my makeup, maybe because I could hurt myself with the applicator or break the bottle and cut myself or something. The few times I was allowed to put on makeup, a big man would stand over me in the bathroom while I did it. This felt unsafe to me, but he was there in the name of my safety.
Frisch: You’ve written about cutting yourself as a coping mechanism. What’s the relationship between self-injury and suicide?
Davidow: One of the main reasons I was locked up against my will is because people confuse the two. For me, self-injury decreased my thoughts of suicide.
It’s important to note that many of us hurt ourselves in socially acceptable ways, whether by eating too much or working too much or sleeping too little. Because my method of hurting myself made people uncomfortable, it was defined as a mental illness. It’s like the distinction between prescription drugs and street drugs: even when the street drugs are less harmful, they’re not OK.
There is, however, some research that suggests people who self-injure are more likely to try to kill themselves. For example, in 2012 Janis Whitlock and her colleagues at the Cornell Research Program on Self-Injury and Recovery theorized that self-injury can lead to a sort of desensitization, which can increase suicide risk. Correlation doesn’t mean causation, however.
I do think it’s likely that people who injure themselves are also experiencing a lot of emotional pain, which may eventually lead them to try to kill themselves. So suicide and self-injury may share a common underlying cause.
If someone believes his or her distress is caused by something biological, or by past trauma, or by a spiritual emergency — or some mix of all three, or anything else — who are we to disagree? It doesn’t matter whether we fully understand their beliefs. What matters is how their beliefs affect their life.
Frisch: What do you say to people who see self-injury as a cry for help?
Davidow: I would say: Ask people what it means for them. Stop trying to guess or assume. Some who self-injure will say they do want attention. Sometimes the system makes it sound as if wanting attention were a bad thing. They call it “attention-seeking.” But there’s nothing wrong with wanting attention.
Not long ago I was at a training with some supposed trauma experts who said that when people harm themselves, we should ask them to imagine what it would be like to stop. For me, the question is “Do you even want to stop?” Personally I want to keep self-injury as an option. I don’t do it nearly as often anymore, but I still do it sometimes to deal with difficult emotions. I don’t want anyone to tell me not to. The moment people start trying to control me, I feel worse.
Frisch: Why do you hurt yourself?
Davidow: At times I feel like I’m floating away, and physical pain reconnects me with my body. As someone who has experienced a lot of trauma, I find that enduring a pain I can control helps me.
Of course, it can have consequences. People sometimes regret the scars on their body. And there are ways of coping that run much less risk of people trying to force you into the hospital. But it’s been meaningful in my life.
Frisch: Besides cutting and burning, what are some of the other ways people self-injure?
Davidow: Some pull out hair. I’m aware of people who use tattoos as a more socially acceptable way of experiencing pain, though those who are into it for the art would probably object to that interpretation. I used to do a lot of piercing. Again, some people consider that body expression, not self-injury.
Frisch: For people trying to find a way to cope, you offer an alternative to hospitalization called a “peer respite.” What is that?
Davidow: Our peer respite, Afiya House, is a space where someone can stay up to a week to avoid going to a hospital or a “clinical stabilization unit,” which is a step down from the hospital but still fairly restrictive and medically focused. Afiya is a nonclinical environment: there are no clinicians present at any point.
When people are in great distress — either because their mind is moving too fast, or they’re feeling deeply sad, or they’re hearing disturbing voices — it’s common for their eating and sleeping schedules to get off kilter, which can exacerbate distress in a number of ways: increased hopelessness, seeing and hearing things that others do not, and so on. That’s why people who come to Afiya House often sleep for a couple of days. Unlike in a clinical environment, there’s no expectation that a person will be up at any particular time of day. If we don’t see you for a while, we might ask if you’re doing OK or want support, but if what you really need is to sleep, no one is going to tell you that you can’t.
Frisch: What do you do when someone is in extreme distress?
Davidow: It depends what that means. Most times we would sit with a person and be curious about what’s happening. We do struggle a bit at times if extreme distress is leading someone to be very loud or to do things that impact the other people in the house. Occasionally we might just ask the person to go for a walk and get out of the space for a while. Other times we’re just open with everyone in the house about what’s going on and how we can all offer the person support.
Frisch: Are the people who come to Afiya House usually all right to leave within a week?
Davidow: For the most part. The truth is that many people can get through very difficult experiences if their basic needs — food, water, sleep — are met and they have someone to talk to. Some people do need more than a week, but if we changed our rules for those few, we’d be unable to meet our goals for helping others. One house with three bedrooms isn’t nearly enough to provide an alternative to everyone who needs it. There are about eight acute, short-term psychiatric units in this area, with dozens of beds among them, and just us as the lone alternative for a population of around 1.6 million.
Frisch: After a serious assault at Afiya House, you said your first impulse was to lock everyone in and keep them safe, but that’s not what you did.
Davidow: In the spring of 2014 a man who was staying at Afiya punched and stabbed a staff member with a pair of scissors and threatened another employee. Both workers ended up being OK, but it was the first act of real violence in our community, which at that time had been around for eight years.
It was a learning experience for me. I understand better now why people might use coercive tactics, because when something like that happens, the reflex is to do anything in your power to make sure it never happens again. But I also realized that a violent response would destroy everything we had created and probably lead to more violence in the future.
It’s also worth noting that there were people who assumed this incident happened because of the lack of clinical support and assessment. But this particular person had actually been sent to us through a clinical program that had assessed him. We believe this was part of the problem: a clinician was encouraging him to go somewhere he didn’t want to be. It was a reminder of just how important self-determination and choice are.
Frisch: You’ve said we do far more harm by deciding we know what the answer is to a problem and forcing it on someone than if we admitted we don’t have an answer. But don’t people with a psychiatric diagnosis often want answers? Do some who come to you for help find it frustrating that you don’t provide any?
Davidow: Absolutely. Our whole culture demands quick fixes. I hear from doctors that if they don’t provide an answer, it frightens people. Marty Hadge, the Hearing Voices trainer I mentioned earlier, has said that, when he first stayed at Afiya and they didn’t pretend to have answers for him, he was frightened. But he also says it was only after staying there, and not having people tell him what to do, that he discovered he could make those decisions for himself and get through an extreme experience without psychiatric drugs.
Our job, and the medical system’s job, is not just to comfort people in the moment — not if it stunts their ability to grow or perpetuates unhelpful cycles. Instead of reacting, we ask, “Is this way of being in the world or coping working for you?” That can be uncomfortable at first, but if there’s to be any chance of turning a crisis into a learning experience, sitting with discomfort is essential.
Frisch: The new buzzword in mental health is “evidence-based.” What does it mean?
Davidow: It’s a movement to fund only treatments for which there is documented scientific evidence of positive results. This sounds good on the surface — of course there should be evidence — but there are several problems with it. One problem is that the only groups who are able to achieve the status of evidence-based are often the ones who have money to pay for costly research. Most small organizations — including many of the grassroots ones that are driven by people’s experience of having “been there” — simply don’t have the funds to pursue it. Another problem is that only certain types of approaches lend themselves well to research: psychiatric drugs, for example. And results get manipulated. For example, in their book Psychiatry under the Influence, Robert Whitaker and Lisa Cosgrove detail how researchers hid evidence that certain antidepressants, such as Prozac, increased the risk of suicide.
It’s important to keep in mind, too, that what gets labeled evidence-based is often driven by money or other interests that have little to do with basic human well-being. The lobotomy was “evidence-based” in its time.
Even if we had the money to do research at the RLC, it would be tricky to make it work. Any attempt to collect evidence can damage the process of forming human connections. We can’t say, “Before we genuinely connect with you, please fill out this questionnaire.”
Frisch: You’ve said that labeling people with a psychiatric diagnosis makes them an “other,” and that makes it easier to violate their rights.
Davidow: Yes, when people die in restraints or because of psychiatric drugs, it can be dismissed as an unfortunate consequence of something that had to be done. And it becomes easier to ignore people’s voices when they speak up about what’s going on, because they don’t have credibility. We offer ourselves as advocates, because people who have an advocate at their side are more likely to be heard and taken seriously. Lone individuals are easier to dismiss, ignore, or pacify.
Frisch: Do the judgments we make about people with psychiatric diagnoses resemble stereotypes of other oppressed groups?
Davidow: I want to be careful here, because I don’t think experiencing psychiatric oppression is the same as, say, experiencing racism, just as experiencing racism isn’t the same as experiencing homophobia, and so on. That said, there are common components. For example, people with psychiatric diagnoses are characterized in the media as violent or out of control in some way. They often don’t receive due process or adequate representation in court. We’re entertained by their stories, but we don’t take their insights seriously. I’ve experienced that last one personally. People love to hear my story, but they don’t actually want to hear my criticism of the system.
Frisch: Have people made comments to you like “You’ve come so far for someone who’s mentally ill”?
Davidow: Yes, or “Look how well you’re doing,” based on a bar that’s set much lower than for an average citizen. “You’re so brave.” “You’re so articulate.” It’s condescending and ultimately quite harmful.
Frisch: Mainstream mental-health organizations and government agencies want to end the stigma of mental illness. You’ve objected to this focus. What’s wrong with fighting stigma?
Davidow: I don’t use language like “stigma.” I talk about prejudice, discrimination, and oppression, because that’s really what it is in the end. Usually groups who invest in anti-stigma campaigns, like the National Alliance on Mental Illness (NAMI), want people to accept their diagnoses so they’ll take their medications and stay in treatment.
It sounds good to say someone shouldn’t be looked down on or penalized for having a mental illness, but it’s wrapped up in the false assumption that they necessarily have a “brain disease.” The message is: It’s not your fault you are the way you are; you’re sick. But this implies that if you’re not sick, then you’re to blame for the way you are. People suffer for many reasons, few of which are their fault. How is someone who has experienced trauma any more at fault than a person with a brain disease?
Frisch: Can you conceive of an antistigma campaign that you could embrace?
Davidow: I wouldn’t have a problem with a campaign to stop human emotions from being treated as a medical problem or to stop painting people who experience extreme states as criminals. But I’ve never seen an antistigma campaign that doesn’t try to get people to accept their diagnoses and take medication.
Frisch: You mentioned that transgender people are more likely to kill themselves. Do other oppressed groups have a greater risk of entanglement in the mental-health system?
Davidow: If you’re a person of color in the mental-health system, you are more likely to be subjected to restraint, and to be restrained longer, and to come out of that restraint with an injury. In New York State black people are more likely to be subjected to forced outpatient treatment in which they have to take medication and are regularly monitored. And it’s pretty widely documented that a person of color is more likely to get a severe psychiatric diagnosis such as schizophrenia.
Schizophrenia used to be seen as a “women’s disease,” by the way. Not surprisingly, this was during a period in history when women were beginning to fight for more rights.
I’ve heard about a transgender woman put in restraints because a hospital employee felt the need to keep calling her by a male name and male pronouns “for her own good.” She finally reacted. This is a common story. Some transgender people on hormones have their hormones discontinued in the hospital without explanation. Even in the outpatient system transgender people are often refused access to clinical respites because there are no private rooms, and the clinicians don’t feel comfortable giving trans people a roommate — or they force them to tell their roommate what’s in their pants. Things like that only feed the emotional distress that led them to seek help in the first place.
Frisch: What about poverty?
Davidow: Absolutely. When I tell my story, I always say that my privilege saved me more than anything else. If I had been a kid of color or living in poverty, the mental-health system would have pulled me in sooner.
Frisch: Or the criminal-justice system?
Davidow: Sure. My mother spent a lot of money on an educational consultant when I was failing out of school. When you don’t have those resources, family disruptions are more likely. By the time someone enters the adult mental-health system, the resources they have had access to often determine where they land.
Frisch: You’ve said that people sometimes participate in “disabling” themselves. What are some examples of this?
Davidow: Whenever there’s outside oppression, such as many people experience in the mental-health system, there’s also internalized oppression. If society says I am dangerous and must be controlled, then I might eventually come to accept the idea that control is the only option.
I met a person at a community hearing on forced treatment who claimed to be in recovery and attributed that to having been forced to accept treatment. This person was shaking and clearly heavily medicated, but who am I to say that’s not recovery for this person? It’s a very different version of health and wholeness than I would want for myself, though.
Many of us hurt ourselves in socially acceptable ways, whether by eating too much or working too much or sleeping too little. Because my method of hurting myself made people uncomfortable, it was defined as a mental illness.
Frisch: Your organization has grown fairly quickly. Why do you think you have succeeded?
Davidow: We’ve set clear limits on how far we’re willing to bend to compromise. Other people who are trying to present alternatives to the mental-health system often tell me they have to use certain language to be taken seriously; they have to do certain things to get funding. Maybe there’s some truth in that, but if we sell out our principles because we’re afraid of losing what little power we’ve won, we damage our movement. Sometimes I hear from other groups that it doesn’t matter if we think differently; we need to stand together because we’ll be stronger that way. And I think, Stronger to what end? We have to stay focused on what we want to accomplish, or there’s not much point in having strength.
Frisch: What would lead us closer to the ultimate goal of helping people?
Davidow: People need to feel heard, and that requires taking the time to sit with them, build a relationship, win their trust, and listen when they talk. We need more people who are willing to step in to offer this kind of support. There aren’t enough of us. Remember that 1979 World Health Organization study on schizophrenia diagnoses that I cited earlier? It found that living in a developed nation like the U.S. made you less likely to fully recover. I think part of that is due to not having a neighbor or a church or a community center where we can go for help. I wish more people saw themselves as responsible to the community, rather than just to themselves or their immediate family. We have so much to learn from each other.
