REBECCA ROBERTS, host:
This is TALK OF THE NATION. I'm Rebecca Roberts in Washington. Neal Conan is away.
As we all try to make sense of the shootings at Virginia Tech, a lot of attention has been concentrated on the shooter, Seung-hui Cho, and whether anyone could have predicted his murderous rampage.
One episode of this show last week focused on how well we can predict violence, and as part of that show, we touched on the issue of whether the mentally ill can be forced into treatment. We got a lot of mail about that topic.
I do wish that someone had stopped the shooter at Virginia Tech before he could perpetrate such a horrible crime, wrote Laura, a listener in California. I'm also worried about taking away the civil and human rights of a large number of individuals based on arbitrary judgments about their behavior or their affect. Rather than moving toward mandatory measures, I think we should work to make mental health more widely available, well funded, reliable and consumer-responsive. Let's not sacrifice our rights in the name of safety.
Well, today we've decided to look more closely at the debate over forced treatment, one of the most polarizing issues in mental health. The process of figuring out how and when to coerce someone into treatment can be difficult, to say the least. How do you strike a balance between protecting the public safety and protecting a person's individual rights?
Later in the hour, we'll read from the rest of your letters. But first, forced treatment. Should it be required? If so, under what circumstances? Where do you draw the line between protecting the public at large and safeguarding the rights of the individual?
We'd especially like to hear from people who have experienced mental illness themselves or have family members dealing with this issue. Our number here in Washington is 800-989-8255, that's 800-989-TALK. Our e-mail address is firstname.lastname@example.org, and you can also comment on our blog. It's at npr.org/blogofthenation.
We begin in California, where Rae Belle Gambs joins us. Her son, Roger, was diagnosed with schizophrenia in 1998. Rae Belle Gambs joins us from the studios of station KVEC in San Luis Obispo, California. Thanks for being with us.
Ms. RAE BELLE GAMBS: You're welcome.
ROBERTS: You tried for years to get treatment for your son, but ultimately you ended up filing criminal charges against him in order to get him help. Can you tell us his story?
Ms. GAMBS: It took seven years after he was diagnosed to get him help, and we got help through the criminal justice system because he was going in and out of jail and in and out of the inpatient unit for the mentally ill. And he'd been threatening to kill me, and he had guns, so he was probably going to do it.
ROBERTS: And why through the criminal justice system? Why couldn't you work through the medical establishment to get him help?
Ms. GAMBS: Because the medical establishment will not treat anybody who will not cooperate, and my son would not cooperate. He was not ill, he said.
ROBERTS: How old was he when he first starting showing signs of mental illness?
Ms. GAMBS: Oh, he started showing it at birth and all the way through school, but the schools did not want to deal with the mental health issue and told us just to feed and clothe him and keep him out of jail.
ROBERTS: But you and your husband recognized that he was mentally ill.
Ms. GAMBS: No, we didn't. We didn't know about mental illness. We should've known, but we didn't. And we didn't know he had schizophrenia until 1991 when he was 18, and it was a blessing to get the diagnosis because then we knew what we needed to deal with.
ROBERTS: But throughout it he resisted getting treatment?
Ms. GAMBS: Yes, and then after he was diagnosed in 1991, he wasn't taking his meds, which is very typical.
ROBERTS: Did he tell you why?
Ms. GAMBS: No, he doesn't, and most people who need to take psych meds don't tell you the reason, either. They just say they take them.
ROBERTS: So, ultimately, you filed charges against him, and what was the process then? Once he was in the criminal justice system, why was he more easy to help?
Ms. GAMBS: We spent three and a half months going through the courts. And the courts were going to send him to prison, so my husband and I had to hire an attorney for us to go into court to talk schizophrenia and treatment, and that was the only way we could get it. And the mental health department tell people who cannot live with their ill loved ones that their ill loved ones have to live on the streets, then the ill person will get treatment because he or she will be sent to jail.
ROBERTS: So you were told to let your son live on the street in the hope that he would get arrested?
Ms. GAMBS: Yes. He lived on the streets for eight months.
ROBERTS: And what sort of treatment is he in now?
Ms. GAMBS: Well, he has wonderful treatment and wonderful people that work with him. In California, we have a program called Conditional Release Program, and it follows people who come out of the state hospital. And if you're on CONREP, you get very, very good health care. You get to see a psychiatrist when you need to, you're in group therapy once or twice a week, you see a case manager, you know, once a week, get to see your therapist, and you can call the - the client can call the CONREP mental-health professionals when they need help. They don't have to wait six months.
ROBERTS: How old is Roger?
Ms. GAMBS: Our son is 32 years old now, and he is a blessing and a joy.
ROBERTS: And do you think - if you had not been able to force him into treatment through the criminal justice system, what do you think his story would be?
Ms. GAMBS: I think he would have shot somebody, or the police would have shot him. That would have been suicide by cop, and I just did not want that to happen.
ROBERTS: Rae Belle Gambs is speaking with us from radio station KVEC in San Luis Obispo, California. Stay on the line with us, Rae Belle. Thank you very much for sharing your story. I want to bring another voice into the conversation.
Dr. Paramjit Joshi is chief of psychiatry at Children's National Medical Center here in Washington. She's here in Studio 3A. Welcome.
Dr. PARAMJIT JOSHI (Chief of Psychiatry, Children's National Medical Center): Thank you.
ROBERTS: How common is an experience like Rae Belle Gambs's?
Dr. JOSHI: You know, it is really an unfortunate story, and the numbers are growing. There are large numbers of young people, both teenagers and also adults, who end up in the justice system only because they don't have either access to mental health care or don't have insurance coverage, even if it is available. And then there's the whole issue of just stigma, which is an issue, unfortunately, that we deal a lot with, especially when it comes to mental health.
ROBERTS: And is the criminal justice system a common avenue into treatment?
Dr. JOSHI: It is an unfortunate avenue into treatment, yes.
ROBERTS: And how common is it for states to have some other method of forced treatment on the books?
Dr. JOSHI: Well, most states have what we call involuntary commitment, and it's a due process. It's not a decision that's made lightly. So if we come across a patient who, in fact, is either an imminent danger to himself or to others - in some states they draw a distinction between likely a danger versus imminent dangerousness - then you can actually commit the patient for a period of time, and that time varies from state to state, after which, really, you need to go through the due process and have a judge agree with your recommendations so that the patient's individual rights are really protected and guarded.
ROBERTS: And why do people refuse to take medication? What do you hear from patients?
Dr. JOSHI: A number of different reasons why. Many don't like the side effects of medications, and most medications have some sort of side effect. Even if you take Tylenol, you can have side effects. So that's one. Two, there's a whole issue of you get well for a period of time and you think you don't need it anymore. I might say the same for all of us who, from time to time, have to take antibiotics. How many of us will actually take a whole two-week recommended treatment? And so, once you get well, you don't think you need the medicine anymore.
And then there are other stigma issues. You know, people find out or you share with someone that you're taking a psychiatric medication and you get dissuaded from continuing to be compliant.
ROBERTS: Let's take a call from Valerie in St. Augustine, Florida. Valerie, welcome to TALK OF THE NATION.
VALERIE (Caller): Hi, how are you?
ROBERTS: Good, how are you?
VALERIE: Great, great. I'm driving and I - well, not right now. Actually, I'm about to pull over, but I was listening to NPR and I was listening to what you were talking about, and it just - we have - I have experience through my brother, a good 18 to 20 years of dealing with his situation and his mental illness and the criminalization of him, actually.
ROBERTS: And have you had to go through the criminal justice system in the way of Rae Belle Gambs did?
VALERIE: Oh yes, we have. Unfortunately, the first time he got ill when he was 16 years old - he's now 36 - our insurance was, you know, used up and virtually eliminated. So throughout his illness he's been diagnosed as bipolar -schizophrenic was the first one, and now it's drug-induced schizophrenia. So he has bouts of illness and bouts of complete sanity and normalcy. Unfortunately, those bouts come within, you know, years of each other. And he's been in and out of jail on petty charges that have ended up - once such charge ended up with him in jail for three years and, you know, thousands and thousands of dollars of attorneys' fees and whatnot just to get him out of jail.
Of course, he had gotten stabilized during the interim and they were keeping him. Just a terrible situation because when he does get ill, we do have to Baker Act him. And in the State of Florida…
ROBERTS: Explain what you mean by Baker Act him.
VALERIE: Oh, I'm sorry. In the state of Florida there's - just like the lady you were speaking - that's the way that you can get immediate treatment, and that is for three days. They are required to keep him. And that is if they are, you know, a threat to themselves or others. But we've had to do that probably 30 or 40 times in the last 16 years. And it's very difficult because he could be chasing you around with a knife, but the police officers will be, like, well we don't see a knife in his hands now. And, you know, there's - you know, we can't really prove that what you're saying is right.
And so we've done that. We've done it through the judge. We've done that, too, but they let him out.
ROBERTS: Valerie, thanks so much for sharing your story. We're talking about the issue of forced treatment, if it should be required, and when and who decides. After the break we'll talk with someone who was forced into treatment himself and take more of your calls at 800-989-TALK.
I'm Rebecca Roberts. It's TALK OF THE NATION from NPR News.
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ROBERTS: This is TALK OF THE NATION. I'm Rebecca Roberts in Washington. Neal Conan is away.
We're talking about mental health and forced treatment. Many states have laws to protect patients' rights. Now some worry those laws go too far and give up public safety in the name of patients' rights. We want to hear your thoughts on forced treatment. Should it be required? If so, under what circumstances? We'd especially like to hear from people who've experienced mental illness themselves or have family members dealing with the issue.
Give us a call at 800-989-TALK. Or e-mail email@example.com. You can also read what other listeners have to say at our blog, npr.org/blogofthenation. My guests are Dr. Paramjit Joshi, chief of psychiatry at Children's National Medical Center in Washington, D.C. Also still with us is Rae Belle Gambs, whose son was diagnosed with schizophrenia in 1998 and treated through the criminal justice system after many, many years of trying to get him help. Rae Belle Gambs, you have since become an advocate for the mentally ill. Where are your efforts focused? What would you like to see change?
Ms. GAMBS: In California, I would like to see what we call Laura's Law, which is like Kendra's Law in New York, I would like to see Laura's Law enacted in California.
ROBERTS: And explain what that law is.
Ms. GAMBS: It's outpatient commitment. It goes through the courts. A judge decides if the person needs to have treatment, and it is for six months. And after six months, then the judge and the courts have to look at the issue again. The fact of the matter is people are forced into outpatient commitment. That's where my son is right now, is forced into treatment. And people's civil rights are being taken away right and left because we jail them. We incarcerate them. And in every county, the mental health facility really is the jails.
ROBERTS: Rae Belle Gambs joins us from the studios of Station KVEC in San Luis Obispo, California. Thank you so much for joining us and sharing your story.
Ms. GAMBS: Mm-hmm.
ROBERTS: Let's take some calls. This is Dale in San Francisco. Dale, welcome to TALK OF THE NATION.
DALE (Caller): Hi. Thank you very much for taking my call. I am vice president of the San Francisco chapter of NAMI, National Alliance for Mental Illness, and I agree with the woman who's on your program. First I have to say that it is known that most mentally ill people have more violence perpetrated on them than the other way around, but for a very small percentage of people, and my son is one of them, who have a history of violence, this law has to be implemented. It was passed but it's not been funded.
And my son is bipolar. He's 32. He has been in and out of hospitals 35 times, and he has insight but refuses to take these very difficult medications and he's always homicidal. And so, if this law was implemented in September, I would have been able to get him re-hospitalized, but I could not. And on January 10th, he tried to kill me. And he threw me down in the house; he kicked me in the head and the back. The police took 25 minutes to get here. Had he had a gun, he would have used it. And the next day took himself to a crisis center and was arrested. And he's now - because of my connections, he's in the behavioral health court after three months in jail. He's in some halfway house someplace, and whether this is going to make a difference or not I don't know. But, to me, I ask people: Where are the civil rights? Is he having more civil rights by being forced into jail or forced into an outpatient treatment program? And I have also been told, and I have been told today by his case manager, that I should make him homeless and go on with my life.
And I just think that people like my son are treated worse now than 100 years ago, before they had the medications. It is a travesty.
ROBERTS: Dale, thank you so much for calling in and sharing that story with us. It's interesting to me, Dr. Joshi, that of the three stories we've heard, they've all been about men. Are there gender differences with some of these illnesses, or does it manifest itself more violently in men than women?
Dr. JOSHI: Well, it really depends on the type of psychiatric disorder. For example, when we look at depressive disorders, it tends to be more prevalent in women as they get older. There are not really gender differences when it comes to schizophrenia or bipolar disorder. So, yes, we've heard stories about two men, but just can't ignore…
ROBERTS: Coincidence is all.
Dr. JOSHI: Yes, exactly.
ROBERTS: Well, let's actually hear from a third man, a different perspective by David Oaks. He's Director of MindFreedom International, a non-profit advocacy group that opposes forced treatment. He's with us from the studios of Don Ross Productions in Eugene, Oregon. David Oaks, welcome.
Mr. DAVID OAKS (Director, MindFreedom International): Thanks for having this dialogue.
ROBERTS: And you were forced into treatment yourself back in the '70s when you were a college student. Can you tell us your story?
Mr. OAKS: I was a working-class kid from the South Side of Chicago and I got scholarships to go to Harvard. And while I was there in my sophomore, junior and senior year I was locked up five times in psychiatric facilities. This was in the 1970s, when I was between the ages of 19 and 21. And what happened was, I entered into extreme and overwhelming mental and emotional problems that were labeled as schizophrenic and bipolar, in other words, psychotic. Things like thinking the CIA was after me, that a neighbor was with the CIA, the TV was talking to me personally, the radio was the voice of God, and all kinds of classic experiences like that during these times.
So Harvard referred me to McClain, which is voted one of the best institutions. I remember the drive to McClain thinking, Now I'll get some help, some rest, some support. And, instead, I found a very aggressive approach of forced drugging. I didn't want to take the psychiatric drugs because I was concerned about the hazards, and they dragged me to a solitary confinement room, forcibly injected me. And I spent days in solitary confinement several times. And that's actually where I got kind of recruited to this human rights work, because I remember in that solitary confinement cell very distinctly for several days, forcibly drugged, and I looked out that screen of that window and I said, there are better ways to help people with severe mental and emotional problems.
And Harvard, to its credit, in its senior year referred me to a volunteer program where I did advocacy for people. And there is a social change movement led by mental health consumers and psychiatric survivors all over the world that's been going on since about 1970. And I just had the great privilege of working with MindFreedom that unites about 100 of those groups. But that's how I got into this work was forcible drugging. It was devastating to me personally to experience it.
ROBERTS: And have you voluntarily taken medication or sought other sorts of treatment since then?
Mr. OAKS: Not the traditional psychiatric care. When people talk about treatment a lot, we need to dive down deeper. They mean drugs. I'm pro-choice about people's decision to take prescribed drugs, but that's what it's about. The current mental health system, if your listeners take away one thing, it's about drug, drug, drug, drug, drug, drug, drug. And again, some people, a lot of our members, choose to take it, feel they benefit from it. But I think there's common ground here with the parents that this is the richest country in the history of the planet, their distressed family members deserve more than just drug, drug, drug, drug, drug and an occasional court order.
If you talk to mental health consumer groups, psychiatric survivor groups, you'll find a whole range of alternatives. Whether or not people are on psych drugs, they want peer support programs, advocacy programs, drop-in centers, peer-run programs such as advocacy and housing programs. There's all kinds of approaches out there that we need to be talking about. But I think the pharmaceutical industry has kind of taken over the mental health system. And again, totally respectful of our members who choose a psychiatric drug route, but that was not my route, and thank goodness, because back then I was concerned that these drugs could cause brain damage.
They were talking about the neuroleptic drugs. Back then it was things like Thorazine, Stelazine, Mellaril, Haldol that I was on. Now there's Clozapine, Risperdal, Zyprexa, and drugs like that. These are the so-called antipsychotics or neuroleptics. And any discussion about forced treatment has to get into what these drugs do. I tell you, okay, with all of my heart, if thirty-some years ago I had stayed on these drugs for the rest of my life like they told me I had to, I would have dementia. And I respect folks that chose that direction, but these drugs can cause brain damage, and current medical evidence is in that long-term high-dosage use of these drugs can cause brain damage.
ROBERTS: I want to get Dr. Joshi back in this conversation…
Mr. OAKS: Sure.
ROBERTS: …to respond to the criticism that there's too much emphasis on drugs in psychiatric treatment.
Dr. JOSHI: You know, while medications are a mainstay for a number of major psychiatric instances like schizophrenia, bipolar disorder, depression, some of the recent evidence-based studies have clearly shown that a combination of both therapies - and I'm talking about talking therapies - and medication are far superior than either alone.
And so I respect the gentleman's views about his experiences back in the '70s, but I also want to remind listeners that the rules about involuntary seclusion, I think that's what he's referring to while he was in the inpatient unit, have new guidelines. So, for example, when a patient is secluded in a seclusion room, the patient needs to have a face-to-face evaluation every hour by a licensed clinician so that - again, it is to protect the rights of the individuals so that patients are not needlessly for hours or days on end being secluded.
ROBERTS: Let's hear from Cecilia in Tucson. Cecilia, welcome to TALK OF THE NATION.
CECILIA (Caller): Good afternoon. Thank you very much for taking my call. I want to share with you a little bit about what your previous caller said. My brother is 36 years old. I'm his guardian. He had his first psychotic break at the age of 15 and has taken every imaginable anti-psychotic medication to the point where he suffers from neuroleptic malignant syndrome and a muscle breakdown disease called rhabdomyolysis, and I'm probably not pronouncing it right, where pieces of muscle tissue break off and go into the bloodstream and becomes toxic.
He has been petitioned into a hospital at least 15 times over the last 15 to 16 years because, when he is having an episode, he doesn't know whether - he doesn't think that he needs to go to hospital. And every time he's petitioned, the police come, handcuff him, and take him away. So he never understands why he is being arrested, but he is not. And he can no longer take any anti-psychotic medication because his liver and his kidneys are in such bad shape now that he basically is in an assisted-living place where he just babbles all the time now. And it's very, very sad.
ROBERTS: Dr. Joshi, what sort of options are available to Cecilia's brother?
Dr. JOSHI: You know, the neuroleptic malignant syndrome is a very rare, but a quite dangerous side effect of anti-psychotics. And when it happens, patients can be really limited in the kinds of medications that they can take, especially when it comes to anti-psychotic medications. All the more reason that we follow these patients really, really carefully. Because when they are really quite psychotic and unable to function, we have to manage them in a very secure setting so that they don't harm others and they don't harm themselves. And, you know, the decisions are made case-by-case, and we do the very best to help these patients. And there is always risk benefit no matter medicine one uses. It's always balancing the risk versus the benefits and all the more…
Mr. OAKS: (Unintelligible).
Dr. JOSHI: …and all the more reason for patients to be compliant so they can be followed very regularly, so we don't want any sorts of difficulties.
ROBERTS: You're listening to TALK OF THE NATION from NPR News.
David Oaks, let's get you back in here.
Mr. OAKS: Yes, I just like to briefly respond to the caller that there ought to be a whole range of alternatives available, and that starts with a different paradigm. The model of the current mental health system is still very authoritarian, and what we're finding is that our members who fully recover -and yes, one can fully recover after a diagnosis of even schizophrenia - the common denominator are things like empowerment, self-determination, peer support, community connection, jobs, housing, a whole range of approaches.
What helped me back then, when I was diagnosed as psychotic and was locked up five times - family, friends, peer support, we had a drop-in center. I improved my nutrition and exercise. I avoided recreational drugs. And even activism and advocacy were important. Even things like - we did nature outings, this little group of ex-mental patients. I learned from them that peer support is kind of the - it's kind of the solar power of mental health. It's really an engine of support that can really be sustainable for folks whether or not somebody is not a psych drug.
So the emphasis on force drugging is what we call reductionist; it kind of reduces the whole question down to kind of a really simple bumper sticker, which is more forced drugging. And I just want to warn the nation on the TALK OF THE NATION that incredible suffering and death can be caused by that approach. I'll just mention my diagnosis was schizophrenia. Those of us with that kind of serious diagnosis, the current study now shows our lifespan is 25 years less.
A lot of reasons for that, but one of them may be the super powerful drugs. And we're finding that in the poorer countries - the World Health Organization did two studies - that the people that have best recovery, full recovery, reintegration into the community are the countries with the least psychiatric drugs and psychiatrists. The poorest countries have double the recovery rate that we do.
ROBERTS: David, I want to ask you a question. We have an e-mail from Anne in Jackson, Michigan, who says: I was recently diagnosed with bipolar disorder after being treated for depression and anxiety for 11 years. I firmly support forced treatment for those with serious mental health programs. Free will and informed decisions require a certain level brain function. When the brain is not functioning properly, you can't expect decision making to be working well.
You wouldn't ask a diabetic to somehow make his pancreas work at a higher level than possible, but that's sometimes exactly what you're asking someone dealing with significant mental illness. You're asking his brain to function at a level that allows him to make informed decisions.
Mr. OAKS: Two quick replies. One is, there's no force treatment for diabetics. Why is that? There's a lot of folks diagnosed diabetic that are eating horrible foods, doing terrible things to their bodies. They're not being forcibly treated with diabetes medication. But also, the best doctors in diabetes, when you talk to the cutting edge doctors, they're finding that all kinds of non-tangible things help us, even for diabetes and heart conditions. Things like our community, our culture, our connections to each other, our relationships.
ROBERTS: But what about the specific question of not necessarily being the best judge of the decisions about your own treatment when you are in the middle of a psychotic break?
Mr. OAKS: Okay, there I was, middle of the psychotic break. I thought the neuroleptics were poison for me, personally. And again, I respect other people's decisions. I thought it felt like it was damaging my brain, that it was potentially harmful to me. I was right. The current medical evidence is that there's a very high risk from these drugs, including frontal lobe shrinkage. Now that's shown with CT and MRI scans. So I was right.
ROBERTS: We need to take a short break now. We will talk more with Dr. Paramjit Joshi and David Oaks when we come back. And more of your calls, 800-989-TALK, or e-mail firstname.lastname@example.org.
I'm Rebecca Roberts. It's TALK OF THE NATION from NPR News.
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ROBERTS: This is TALK OF THE NATION. I'm Rebecca Roberts in Washington.
And tomorrow on TALK OF THE NATION: With the NFL draft coming up this weekend, college football players worry about their stats, their knees, their prospects. Now add behavior to that list. New rules make pro football teams more responsible for players off the field, and players need to show they can behave as well as they play. Athletes behaving badly, plus our Wednesday visit with the Political Junkie, that's tomorrow on TALK OF THE NATION from NPR News.
In a few minutes we'll read from your e-mails, but right now we're talking about mental health and forced treatment. Dr. Paramjit Joshi is still with us. She's chief of psychiatry at Children's National Medical Center in Washington D.C., and David Oaks, director of MindFreedom International, a non-profit advocacy group opposed to forced treatment.
If you want to join the conversation, give us a call. 800-989-TALK - you'd think I'd know that number by now - 800-989-8255, or e-mail email@example.com.
David Oaks, what do you think the impact will be of the Virginia Tech tragedy on your efforts to fight forced treatment?
Mr. OAKS: If we do nothing, if people who are diagnosed with psychiatric labels and our allies do nothing, horrible disaster. I would predict hundreds of thousands of more young people prescribed powerful drugs without adequate advocacy, information, alternatives - and again, I'm totally pro-choice about the decision to take it - but I see mass increase in forced drugging, and also just prescribing drugs to especially college kids.
If people speak out, if people with psychiatric diagnoses speak out, if our organizations get a voice like you're doing here - and TALK OF THE NATION is one of the few places we've heard about to have the voice from the sharp end of the needle, as we say. Even though this topic is hot all over the nation, this is one of the few - you're one of the few shows, thank you, to have this side of the story.
So let's hear from mental health consumer psychiatric survivors and perhaps something could somehow be taken from this horrible tragedy that we can hear from people who've been there. What has helped them recover? What is it like to be forcibly treated? A lot of us actually see that as violent. I still have traumatic dreams about being forcibly drugged 30 years later. It was a form of violence.
ROBERTS: Let's hear from Chris in Kansas City, Missouri. Chris, welcome to TALK OF THE NATION.
CHRIS (Caller): Thank you. Thank you. Good day to you all…
ROBERTS: Good day to you.
CHRIS: …David and Dr. Param. Well, do you want me just to say something, or do you want to ask me a question?
ROBERTS: I would like you to say whatever it is that's on your mind, Chris.
CHRIS: Okay. Well, currently, I'm under forced medication - because the reason it's forced is because if I go off of it - I voluntarily take it every night, okay - but it's forced because if I go off, they have threats. My parents and my doctor have threats that they will take me to the hospital for a few weeks or something like that. So…
ROBERTS: Chris, what are you being treated for?
CHRIS: I am currently evaluated with paranoid schizophrenic. Yes. Now, I had a period of what I call a social sickness. That is my best phrasing for the current time, because I think that I did not know how to swim with the rest of the dolphins in the big sea when I got back from college. So it took me quite a while because I have a very fertile imagination, and I didn't know what kind of a job to get. I didn't finish with a degree, per se. I had 120 credit hours, but I didn't have a label for my degree. So…
ROBERTS: And Chris, do you think that you don't need to take the medication? Would you prefer not to be on it?
CHRIS: Yes. I would at this time. Now it's taken me a long time to come to this conclusion because I thought, well, maybe they are right, you know, for a long time. And I voluntarily took myself off a couple of times and I noticed some bad feelings. Well, I think what it was was a reaction to the side effects of medication that they were giving me. I thought, yes, I am paranoid because I felt anxious.
CHRIS: But it was the side effects of medication that I was feeling anxious about.
ROBERTS: Thanks for your call. We have an e-mail from Charles, who says: One thing about taking mental health medicines that's not been mentioned, when you take them you don't feel like yourself. You feel like a stranger in your own body. It's like you don't know yourself. I've been dealing with moderate to severe depression for more than 20 years. I'm not on my medication due to money issues, but also feel these medications alter how you feel, and it's not just feeling a little off. You feel very removed from everything.
Dr. Joshi, given comments like Charles and Chris, are there any prospects for making these drugs better. If in so many ways they seem to save people's lives, but they have so many side effects. Is there a next generation of drugs that might not be such a risk to take?
Dr. JOSHI: You know, that's an ongoing effort, and in fact in the last 20, 30 years there have been so many new medications that have been developed, and some of the older antipsychotics that Mr. Oaks was referring to have been replaced by some of the newer antipsychotics, and the goal always is to produce a medicine which doesn't have side effects, but the reality is that there are always, you know, individuals who might respond to a particular medicine in a different way than others. But overall the net result really is that more patients are helped by these medications than hurt.
ROBERTS: Let's take a call from…
Mr. OAKS: If I could briefly respond to that.
ROBERTS: Yeah, sure.
Mr. OAKS: This is the second time I've heard the doctor - I totally respect you - that yes, my experiences were 30 years ago. But we regularly receive calls at the MindFreedom office from folks like the individual that's under forced outpatient or in his case pressured outpatient commitment.
There's a lot of people now at home under court order to take these drugs, thousands of people all over the USA, and people can turn to our Web site at mindfreedom.org to link up with others who are dealing with that coercion, but it's happening right now, and the drugs can still cause brain damage. The newer models can still cause brain damage in long-term, high-dosage use, and again, totally, we're totally pro-choice about people's decision to take it.
ROBERTS: Let's hear from Judy in Arlington, Massachusetts. Judy, welcome to TALK OF THE NATION.
JUDY (Caller): Thank you.
ROBERTS: You're on the air, Judy. What's your comment?
JUDY: Okay. I'm a person who was diagnosed with schizophrenia, forced to take medication, forced into a hospital, and it remains - and the doctor's going to say, oh, that was a long time ago, so it's different now - it remains one of the most horrible experiences in my life, and it shaped my whole life because I became an advocate, like David.
When I was in the hospital, I said to myself there's got to be a better way to treat people than this. I was depressed. I was actually looking for help when I went in. I ended up getting involuntarily committed after having gone in voluntarily, and I said there's got to be a better way. Why are we treating people like criminals whose only crime is that they're depressed or miserable or unhappy?
And so I became part of an advocacy movement that started back in the 1970s, and we are actively out there not only advocating for our rights and for our -especially our right to speak for ourselves, but also developing all kinds of self-help programs, which exist all over the United States, which are funded out of, in many states, out of the mental health budgets of states to provide self-help, peer support, things that people do go through voluntarily, and a lot of people who come to our programs voluntarily won't go near the mental health system, the established mental health system because they've had such bad experiences.
ROBERTS: Judy, thank you for your call. David Oaks, I wanted to ask you about that but also about - we heard earlier from Rae Belle Gambs, who felt that the criminal justice system was the only way she could get her son help and that that was much more intrusive and violent than had she been able to commit him through the health system.
Mr. OAKS: Well, two things. One is, the vast majority of us, as people have pointed out here, are non-violent. We are peaceful. I am a diagnosed psychotic. I'm one of the few people that come out of the closet and say that. That's a label you hide, believe me.
It's - we actually have a mad pride movement to encourage people to speak out on that. So number one is, the vast majority of us, like the caller - Judy Chamberlain is a famous advocate in this field whose given her life to this field, and you don't hear about the Judy Chamberlains. You hear about the Chos.
But second, the fact is that when somebody does an aggressive, dangerous act -we know Cho, for instance, was stalking. We heard about other criminal acts people have done, threatening - for instance, one of your guests has been threatened by a person with a psychiatric label.
We're not against the use of state force. I mean, that's against the law, and the problem is the criminal justice system is just horrible, where people are just thrown into a cage. And we all agree, there's common ground, that ain't the way to go. But when the state uses force, isn't there something more than metal prisons and chemical prisons? Can't we be more creative with all kinds of support groups and alternatives and advocacy and jobs programs and home programs and housing programs? Let's be more creative about it.
I think, you know, I think the problem is we're stuck in this medical model, because I'm told all the time that it's because - supposedly a chemical imbalance, and I encourage any journalist listening to just ask professionals, is there any study showing an actual chemical imbalance? There's no study on that, so we're kind of stuck in this one medical model. I don't even use the term mental illness anymore.
Dr. JOSHI: But Mr. Oaks, if I may just respond to your comments. Don't you think we can all work together? Because it seems to me what this tragedy has brought to the fore really is that we need to educate the public about mental illness, that there is help available, work against the whole issue of stigma so people can reach out and get treatment and get help, and your points about getting other kinds of supports and, you know, family input and the community, I think these are all wonderful ideas. But we all need to work together, and advocacy groups have an important role.
Mr. OAKS: I agree, but the missing voice again is often people who have been through the mental health system. They tend not to be listened to, almost - in fact, I'd say - I'd go out on a limb and say every mental health consumer group I've heard of opposes expanding forced drugging and commitment laws. Why is that? Because they have found other ways to help other than more forced treatment.
So we're not really hearing from folks. In fact, a lot of the groups in this field get substantial amount of money from the drug industry. MindFreedom has the same position as Amnesty International. We refuse any money from the mental health system, the drug industry, governments, religions. We're totally independent, and there ain't that many groups like us out there.
ROBERTS: David Oaks is the director of MindFreedom International, a non-profit advocacy group that opposes forced treatment. He spoke with us from the studios of Don Ross Productions in Eugene, Oregon. Thanks, David Oaks.
Mr. OAKS: Thank you.
ROBERTS: You're listening to TALK OF THE NATION from NPR News.
Dr. Joshi, what do you think will be the impact of the Virginia Tech incident on this debate? Do you see some search for common ground or a reaction to more stringent commitment laws? What do you think will happen?
Dr. JOSHI: You know, my hope is that there will be more common ground. These are decisions that are not made lightly. I think it's going to force the mental health community, it's going to force universities, places of work, to really try and come up with a system, and we really can't be polarized on this. We really need to be going about it in a very thoughtful way.
You know, what determines dangerousness, you know, the various levels of it? At what point do you really mandate that treatment occur? And the issue really -there are three things that we need to keep in mind. One, that we really adhere to very carefully is that the treatment needs to be provided in the least restrictive setting. Now, for some patients, under certain circumstances, that could be an inpatient unit. For others, it could be intensive outpatient treatment. For others, it could be supervised housing and supervised treatment in some way, shape or form.
And the second one really is the type of treatment and then the duration of the treatment. So I think we need to be thoughtful about this, and I think your show really brings all these issues to the table, and we need to sift through this. But again, I know I said this before, but education around mental illness is key because I think if people are educated about it, they're not frightened. They're not afraid. They will go out and get help.
ROBERTS: Dr. Paramjit Joshi is chief of psychiatry at Children's National Medical Center. She was here with us in Studio 3A. Thank you so much for joining us.
Dr. JOSHI: My pleasure.
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