Thursday, September 17, 2009

The Conundrum: to force, or not to force people to get treatment? (this is going to be a long one)

I'm a little on the fence about this issue. I've discussed forced treatment before on this blog. The reason I'm on the fence about it is, while I agree with E. Fuller Torrey, author of Surviving Schizophrenia (which I think is an excellent book like no other that exists) and founder of the Treatment Advocacy Center on some points, I don't completely agree. Similarly, while I agree with The Bazelon Center for Mental Health Law, which has long been completely at odds with the Treatment Advocacy Center and Torrey, in some ways, I also understand the problems with their argument.

Basically it boils down to this: People on the Torrey side of the street believe that those of us with severe mental illnesses, such as Schiozphrenia, and Schizoaffective Disorder, should be forced to take medication whether they want to or not, as medication will help them, and prevent them from ending up in jail, homeless and on the streets, and unable to function.

Across the street at the Bazelon center, there are folks who are all in an uproar against the other side, because they think that people with mental illnesses have civil rights and that those rights are denied when these people are forced to take medication that they do not want, or locked up in a hospital which they don't want to be in, or forced to live in a group home where they don't want to be. Considering the historically deplorable conditions of most psychiatric hospitals, which have improved greatly since the days when people were chained to walls and locked in cages, but haven't improved nearly enough - the Bazelon side has some good points to make. Whose civil rights are being protected when someone is locked into a state hospital? The person with the mental illness? Or the public that hates that person and doesn't want her on their sidewalks?

That's the question.

Torrey would say, by locking someone into a mental hospital, you are protecting their rights as you are giving them forced treatment which will help them (hopefully) get better. He makes that argument in this OpEd piece about people in New York City being released from group homes and put out, essentially, to fend for themselves on the street (according to Torrey). According to Torrey, advocates for the mentally ill sued to get those people released from those group homes, in the name of civil rights. Torrey says that this is wrong for a few reasons. For one, he thinks the people will end up on the street and therefore be homeless, and ostensibly, he cares about this. But on his other point, he says that the public at large will be harmed by people with mental illnesses living on their doorsteps and in their public parks, and (and here's where I disagree), potentially becoming violent and harming people.

The number of people with Schizophrenia who actually become violent and harm others is very low - but you'll never hear that fact come out of Torrey's mouth or read it any of his writings. So I take offense. I have this illness. I have never, in my entire life, including during years when I was floridly psychotic and not on any medication, been violent or done anything to harm another human being intentionally, or unintentionally. I have met, through my travels in the mental health system, MANY people with serious mental illnesses, and I know of one of them who became violent and killed someone - but this person was also a serious drug addict. The other 99% have never done anything to hurt the public or any other individuals besides themselves. Most, of course, have harmed themselves at some point (and sometimes on a regular basis). The research supports my argument here. And the Bazelon Center folks, along with numerous other groups fighting for the rights of people with mental illnesses, make this point all the time. We're not really a big threat to the public. We're not a bunch of murdering psychopathic serial killers like the people you see on TV and in films with Schizophrenia, either. And we have human rights. So the Bazelon Center considers that recent court decision in New York to be a victory.

There are other patient advocate groups, too, that say medication should be an option and not ever a forced one, and some who say medication is a problem altogether. I recently found this group, the Icarus Project. Their website states the following: "We are a network of people living with and/or affected by experiences that are commonly diagnosed and labeled as psychiatric conditions. We believe these experiences are mad gifts needing cultivation and care, rather than diseases or disorders.". It is this kind of description of mental illness which troubles me. There is no other serious disease that I can think of which people would refer to as a "gift". I do not consider suffering through psychosis to be any sort of "gift", unless you're talking about a gift from Hell. Is hearing voices tormenting you and telling you to die, to kill yourself, to think you're a worthless piece of trash, so often that you can't think clearly enough to function in the world to be a gift which one would want to "cultivate". Destroy, maybe. Cultivate, no.

I am all for civil rights. I am all for creativity. I am all for people loving themselves and not being labeled with derogatory terms. I agree with the folks who think the term "Schizophrenia" has such a negative connotation in our society that it needs to be replaced with a new word or words. But I draw a line when it comes to thinking of an illness as a gift, when it comes to being "proud" that I'm "mad", when it comes to giving a positive spin to something that almost killed me and tormented me daily for a decade. I'm not mad. I don't really even understand the purpose of "mad pride", although I can understand people wanting to be proud of themselves. We all want to be proud. And I am proud. I'm not proud that I have the "gift" of Schizophrenia. I'm proud that I know how to live with Schizophrenia. And there's a difference. Schizophrenia doesn't enrich my life. I enrich my life by my own efforts, in spite of Schizophrenia.

And I'll go further, to say, medication saved my life, and that is not something I'm ashamed to tell you. If it were not for medication, I would still be wandering around hearing voices, seeing the same color everywhere, thinking I was Jesus, searching Scientology books for clues, hiding from the CIA, and attempting suicide on a regular basis. And the way that I got on that medication, was, in fact, because I was forced into a hospital by a judge for a period of six months, and I had no choice about the matter. And if I had to go back to that time period, and I was living with this same illness destroying my life, I would say, yes, go ahead, and lock me up and make me take that damn medication because it is only after I have a period with less psychosis, only after the voices stop or at least slow down and the delusions lessen, only after I understand that I actually am ill and that medication is actually not poison, only THEN that I even know whether or not taking medication is something I should do.

If I do not possess the ability to DECIDE based on real facts and clear, logical thinking, that I NEED medication, then, yes, I agree that I may need to be forced to take some.

I am an activist and an avid believer in civil rights. But I'm also just talking about reality here. In my own real life, this is what happened. And I also see the homeless people on the street where my apartment is, and I see them wandering with their bags, and their suitcases, and their shopping carts, sleeping in the neighborhood parks, looking dazed and confused, and I think, "THANK THE FREAKIN' UNIVERSE THAT I'M NOT THERE". Because I have been there. I never lived on the streets, but I was homeless and in homeless shelters more than once. And I would rather give up my civil right to NOT take medication, than to keep that right and be in that same situation of psychosis and homelessness again. But I can say that now, because, I'm not psychotic now. I know I have an illness now. I know how it affects me now. I have a great deal of insight into this illness now. Such was not always the case.

So, I guess, at the end of the day, I am closer to E. Fuller Torrey's side of the street, which is strange, really, since I do believe strongly in people's civil liberties. But I'm not so sure that the right to suffer and die should be considered a civil liberty as much as it is considered inhumane torment.

I am grateful for a gift, but the gift is not my illness. The gift is insight. Thank the universe for that.

That said, I do want to explain that I'm not trying to downplay the importance of human rights or the problems that do exist in the mental health care system we have, or the horrible side effects of medications, or the fact that for many people medications do not work at all, or the fact that there is no cure for any mental illnesses. I think in the article I linked to in the first paragraph of this post, the important point that Torrey made was that the group homes which were not up to par and were decrepit and awful needed to be improved, that the answer was to improve them, and not to shut them all down and leave the folks who lived there with no place to go.

I know very well that psychiatry is not perfect. I believe that people should empower themselves, and if there are alternative treatments that work for you, then great, go for it, do what you want. But for many of us, alternative treatments do not work, and in fact nothing much does work other than the pills. So we are stuck with this reality, and it is an important reality of which to be aware. If people do not understand this reality, they are not really empowered at all. They are stuck in the dark.

Then again, the solution is not to round up all the homeless people with signs of mental illnesses, cart them off in buses to a compound, and inject them all with Risperdal. The solution is more complicated than that. This is a discussion that has many sides to it, and there may be more questions in the air than answers, as I finish this post. But I am not a god. I don't have all the answers. Just some thoughts....

5 comments:

The Medcalfs said...
This comment has been removed by the author.
Ashley said...

Hey Jenny! This is Ashley, Jessica's friend. I just wanted to compliment you on this blog. Your sister told me about it a month ago, and I've been a devoted reader ever since. You really hit the nail on the head when it comes to mental health issues. You are an amazing writer and I really feel that you are capable of doing something amazing with your talent - a book, mayhaps?

All the best, and keep writing!

Ashley*

Jennifer, aka beautiful mind, complex life said...

Hi Ashley~

Thanks for stopping by and leaving a comment! I remember when I discovered you in the basketball court 15 years ago - haha. Yashley.

I don't know if I could do a book, but I would like to try. Thanks for the feedback!

Jen

Lady_Amanda said...

Hello Jennifer,
You tackled a very diffucult subject and much debated in the mental health community. You know what it made me think of? Girl Interapted. At first the main character (played by Wayonna Rider) thinks what she has is a gift because her friend (played by Angelina Jolie) showed her that side of mental illness. However, then one of the people on the ward with them kills herself. And Wayonna's character starts taking her medicine and gets better. I know for the first five years of my mental illness, I thought it was a gift too! Now I see how messed up I was. I still in a way think of it as a gift, but not that way. More like this disease was given to me to edcuate people about taking their medicine and getting better! I think the ulimate gift for all of us is if they could find a cure. And not a genetic sort of killing babies with the genes for mental illness, but a real cure for the beautiful people that do have that gene!
Thanks,
LA

Jen said...

Hi there,

My husband has schizoaffective disorder and is medicated (thank goodness- he has never been violent, but as you know, it is SCARY for him to be paranoid and distrust all that he knows is true when he is not in the midst of a relapse). Please keep writing. It is comforting to me to know that stability can thrive through this debilitating illness (when managed). My husband is actually starting his own blog. Please check it out in the upcoming days- www.aschizoaffectivemind.com

Stay well!!

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