NAMI 2007 Convention: An Interview with Jonathan Stanleyby Robin Cunningham Patient Expert
Jonathan Stanley__, J.D., is the Acting Executive Director of the Treatment Advocacy Center (TAC), which is a national nonprofit organization dedicated to eliminating barriers to the timely and effective treatment of severe mental disorders. After the onset of bipolar disorder, he graduated from law school, was a practicing attorney, and then joined the TAC in 1998. One of his colleagues (Mary Zdanowicz) said, "...Jonathan's work has made an indelible impression on the landscape of treatment law reform across the nation". He received the Anchor Achievement Award for Leadership and Excellence in Mental Health Advocacy in 2005. You can find more information about the TAC at http://www.treatmentadvocacycenter.org/.
RC: You have quite an amazing story. When did you first become ill?
JS: I got ill in college with bipolar and then we found out I had psychotic features. I think I was about as sick as sick can get. Just briefly at the apex, I went 72 hours in the streets of New York. No sleep, no money, no food. I was running from secret agents from the National Intelligence Agency that were trying to capture me for my secret powers. And I had energy bursts. I [thought that I] had mental telepathy.
RC: I ended up with Satan and his demons. I've heard that studies indicate that the content of a mentally ill person's delusions can be a function of the times in which they live. For example, in the '50s, delusions often involved space travelers.
JS: I absolutely believe that because we look at a lot of the media that comes up, particularly with tragedies nationwide. One of the things that I found fascinating was after 9/11, all of a sudden these delusional frameworks featured terrorist plots. Al Qaeda started to pop up left and right and there were a lot of people who were totally psychotic trying to storm caverns because Al Qaeda agents were in there. My personal theory - you won't find this in any text book - but I believe that for most people, particularly if they have a paranoid ideation, it has to be something all powerful. It has to be something that can control your circumstances, something that could explain why you're sick. When you see something that normally shouldn't happen, it can then be explained in terms of an all powerful plot. And so we see God, we see demons, we see Al Qaeda and terrorist plots, we see secret agents. I have read that in some psychiatric hospital in the Middle East, [patients think they see] the CIA.
RC: I don't think people necessarily become illogical during these periods of active psychosis, but rather that their belief system is affected. Take someone that doesn't have a mental illness. If they really believe that the CIA is after them, they would look through the blinds before they went outside and frequently check the rear view mirror in their car.
JS: I could not agree more from a personal experience... For someone who is bipolar with psychotic features, my world was one big cube of panic. I mean that metaphorically. In real life, I had such delusions going on. But even thinking back and analyzing them, I don't think that I made any decisions or made any moves that I would not have made in my rational state of mind. So, I think I was analyzing what was presented to me by my illness as I normally would. But obviously, when you think every other person in Manhattan is a secret agent there to capture you for your superhero powers, you're not acting in the way you normally would.
RC: Did you have insight into your illness?
JS: When I was symptomatic, actually not. The way I look at it, it's a slope in that maybe you have some kind of awareness of your illness coming on, but then once you get over the crest, that's it. And the more bazaar the delusions got, the sicker I got, the more certain I was that I wasn't sick at all.
RC: If I go off my neuroleptic for three days, the voices start coming back. And if I'm off somewhere between seven and ten days, it's all down hill. I don't realize I'm ill anymore.
JS: Oddly enough, it shouldn't be surprising. The research has only been emerging in the last 15 to 20 years that the illness actually affects the frontal lobe function, the mobilizing part of the brain that we use to assess our condition. That [finding] was revolutionary. But at the same time, we've been seeing it for hundreds of years. But it's been quantified. And it's something we need to address. It's part of the programs that we look at at the Treatment Advocacy Center.
RC: Why don't you take a minute and explain what the Treatment Advocacy Center does.
JS: The Treatment Advocacy Center is a legislative organization that tries to remove barriers to various treatments [for severe mental illnesses], mainly through changes in the laws, but also through changes in policies and practices. In a nutshell, these are our two main focuses. In many states, a person has to be an immediate and imminent clear and present danger [to themselves or others] before they can be placed in treatment. But that standard is hard to prove and it's not matched to the illness at all. My personal belief is that the line should be when a person cannot make rational decisions concerning their welfare. Because of this you have this gap between physical danger and rational decisions. Whoever is [caught] in this situation gets no treatment. And I should say that the vast majority of people with mental illness are able to take care of themselves.
But as a society, when someone is affected by a mental illness, is unable to care for themselves and is responding to horrific delusions, our only choice is to step in and help them or to leave them alone to end up where the whirlwind of their illness takes them. I know in my personal case, there's no doubt to what I would do.
RC: I have a theory that as long as mental illness remains a special interest group, we'll find ourselves competing for funds with a lot of other good and honorable causes simply because there isn't enough money to go around. If we really want to get the money we need to solve the problem, we have to continue with our traditional practice of working with legislators, but we also must tell our story to the general public. If they stand up and demand a solution from legislators, then we'll get it.
JS: The general public is one piece of the puzzle. There is no doubt about that. But the way to mobilize the public is really through the media. The working media has something to offer. It is the way to reach the general public because some vast percent of American people open up the paper every day. I must admit (without offending anybody in other advocacy organizations) that with respect to paid advertising, even PSAs [public service announcements], and campaigns along those lines, I'm less than convinced that's the way to go as opposed to concerted advocacy. And here comes the nonprofit lobbyist, right?
To get to the people that can really make a difference, we're talking about the mental illness community. But we are handicapped by the very nature of the illness. First of all, many of the people that have mental illness have trouble speaking up for themselves. And of course they have their parents. But let's compare them to another group, those with developmental disabilities. Their numbers are less than those with mental illness, but yet they seem to have more power and they seem to get more money.
It's almost the nature of the illness because it's really the parents who are mainly, not exclusively, but the bulk of the power behind it. If you're the parent of somebody with schizophrenia or bipolar, you typically don't know they have the disease until you're in your mid or late 40s. With developmental disabilities, the parents know about it when they're in their 20s. Essentially the advocacy force behind someone with a developmental disability is double what it is behind someone with mental illness. And that means we just have to get efficient. We have to be there making a difference. We have to talk to the media. And one thing I do is -- we're here at a convention of an organization so dear to my heart, which is NAMI. They have 50 state affiliates, they're in Washington D.C., and in some territories too. But I have dealt with various ones over the years trying to reform treatment for those people that we were talking about... I saw a great disparity of efficiency, of connections to the legislations, of knowing the reporters in the various places, and that's a matter of focus. It's a matter of work.
RC: I sit on the New Jersey Governors' Council on Mental Health Stigma. We are working on how to reach people about stigma. There's a natural bent to simply do public service announcements. But I think there are many different audiences that must be reached and to be successful, we have to target them with different approaches.
JS: It depends on the size of a state. In a typical state, ten or twenty letters can make a difference if we give the legislators what they need to make an informed judgment. Each letter coming in really speaks for the voice of hundreds of thousands of people. Getting people to write [their legislators], and also getting your legislative leaders to be in there making the connections, takes a lot of work. Unfortunately, we nonprofits in the mental health field don't have checks to write. You know, there are a few for profits companies in the mental health field that get to do that [write checks]. But we don't. So what do we have to do? One, we have to know our stuff better than anyone else. And second of all, be helpful. Not please do this. But here's what you need to do with this.
RC: This is a long, hard process, but I think we'll get there. Take NAMI, for example. I think NAMI is absolutely fantastic.
JS: NAMI is phenomenal. At the Advocacy Center, we get thousands of calls a year from people who are in that middle ground between dangerousness and rationality and they ask, "What do I do?" We help them as best we can. Chances are if they have a kid who got sick five years ago, they know about NAMI. But for the new ones, [we say] get yourself to a local NAMI chapter and see what you can do. Because I can sit there at my desk in Virginia and say I read the law, here are some general tips, and I think I've been helpful. But that can't take the place of going to your [NAMI] monthly or semi-monthly meeting and talking to people -- some of them have been taking care of a kid with schizophrenia for 25 years. They know the resources, the doctors, the people in the police system and who to call because they know what to do.
RC: When I got sick, it was a choice of the attic bedroom and the state mental hospital. That was all that was available.
JS: Well, look at me. I'm a partial generation younger than you. After I got sick and finally got to the hospital in 1988, they treated me with lithium and it didn't work... And then they added in tegretol. I will say this threw my parents for a loop because there was a 60% chance that the combination of lithium and tegretol would work for my bipolar disorder, but up to a 40% chance that it wouldn't. And that was all they had. Those were the only medications, just 20 years ago. If we look today at all the combinations of medications available to somebody that has their first break with a bipolar disorder, we find they have many options. Let's be very clear. None of these medications is perfect. There are side effects, but compared to psychosis, it's a no-brainer. The medications now are light years ahead of where they were 20 years ago.
RC: I had a bad psychotic break when I was in graduate school. It started a year earlier when I was put on a medication that wasn't effective for me and that was noted for its side affects. I just couldn't handle the terrible side effects. To me it seems counterintuitive, but these medicines have such different affects on different people. It's something I don't think the general public understands.
JS: For whatever reason, unfortunately, it's not like a headache. Take an aspirin. I think in layman's terms, each of our brain chemistries are so different that different medicines effect different people in different ways.
I think we should also appreciate that it's not that easy for a lot of people including ones that get treatment. They don't have coverage of their symptoms and I especially think of the ones that get no treatment. Just to spew out the advocacy facts that I use with committees - We're talking 200,000 people with [untreated] mental illness who are homeless [or one-third of the estimated 600,000 homeless population] and 300,000 in jails and prisons [about 16% of the total jail and prison inmate population]. In the general population, about 1 in 100 has schizophrenia and 1 in 100 has bipolar disorder.] That's partially because we don't have perfect medications yet. But I think just as important, a lot of people that need medications don't get them. And that's partly what we [at the TAC] try to address, whether it's doing court ordered out-patient commitment or getting to those people in crisis, but it's all for a lack of systems that are reaching out and getting them care.