Those wiley crazy people
Someone sent me a link today to lackofinsightmi.org, the website of a group of concerned relatives who feel the mentally ill people in their lives don't understand their condition enough to make rational decisions about treatment. I'm surprised I never saw this website before, but it's interesting.
As a longtime advocate and journalist who has worked with and spoken to countless family members, I naturally sympathize with their frustrations. I recently spoke to a woman who was quite elderly and frail. She was in despair because her son, who suffers from schizophrenia, was sleeping on the floor because a delusion made him throw out his bed, which he imagined was evil. His living space is so filthy that he's sleeping in urine. He calls her three or four times a day, completely delusional, and her heart is breaking. When he takes medication, which has worked for him in the past, he's able to live a healthy life. But he always stops taking it, and then moves into a space where he believes the world is populated by demons and ghosts. He has no ability to understand his illness at all. She's worried he's going to die like this, but she's powerless to get him help.
If you had talked to this woman, as I did, you would want to wrap her up in your arms and tell her everything's going to be okay. But I couldn't do that because it's not true. She can't help her son -- and what could be more painful for a parent? Anyone who has children can understand the agony this woman suffers, knowing her "little boy" is sleeping on a floor crawling with bugs. She loves him.
On the other hand, this woman I met isn't part of Lack of Insight Mental Illness. And I'm glad of it. On their homepage, they take language from TAC, saying:
Please note: the mentally ill are NOT stupid, and they do learn how to "work the system" to avoid treatment. It is extremely frustrating for concerned relatives -- fathers, mothers, sisters etc. -- to not be allowed to contribute information to doctors trying to treat a patient who can't or won't provide truthful information.
The persistence of this notion of "the mentally ill" as Other makes these folks seem less caring than they claim they are. In order to love someone and do right by them, you have to, in some way, be able to see them as you see yourself. You have respect them. You have to honor them. You can't think of them as crafty and sly and "working the system." It sounds like you're talking about a dog who keeps jumping the backyard fence.
Every time I think I might be able to find some moderation in this debate, people say absurd things like the above. I wish we could figure out a way to get people talking in a creative, mutually respectful fashion.
Comments
The idea that anyone would want to "work the system to avoid treatment" may have something to do with treatment involving controlling and intentionally or not, abusive family members. If I were to present evidence against your mental state in a criminal trial, I would have to be subjected to a full "psychological" evaluation myself. Why not make this the case with people who accuse a non dangerous person of needing imprisonment for sleeping on the floor and believing in ghosts, etc. If family members of someone labeled mentally ill are to provide their version of the problem, they should be willing to submit to "psychological" evaluations themselves, otherwise how can the doctor know whether or not more than one member of the family is suffering from "lack of insight?" If as these lack of insight folks claim, mental illness results from inherited biology, surely the relatives of the person identified as needing treatment are just as likely to suffer from lack of insight as the designated patient. The reluctance all such have to enter any form of therapy or submit to any psychological scrutiny weakens their already weak claim that they are "just trying to help."
Posted by: Sally Russell | August 16, 2007 12:47 PM
What irks me more than the "working the system" statement is this one:
"We do not hesitate to insist that a baby receive a shot for tetanus, even though the baby may struggle and protest loudly, because the treatment is for the baby's own good. The baby's age has little to do with this; IT IS THE FACT THAT THE BABY IS NOT MENTALLY ABLE TO UNDERSTAND THE NEED FOR THE TREATMENT AND THEREFORE SOMEONE ELSE MUST INSIST HE HAVE IT." (emphasis theirs)
So now we're babies?!
Tetanus vaccinations are hardly comparable to anti-psychotics and antidepressants. She may as well be comparing taking a tylenol with brain surgery.
Another quote that gets me:
"But there is what seems to me to be a BIG FLAW in this scenario, and it is this: She is being allowed to use an obviously defective brain to make these decisions."
Here I thought I was just a little ill, but now it seems I lack the insight to know that I must be mentally retarded because of my "defective brain."
Posted by: Jon S. | August 16, 2007 02:32 PM
Thank you for sharing that story Liz. I too, am a parent who loves my daughter and respects her illness.[and my own] It's been a long road for her, and myself as well. One thing I have learned, which sounds too simple--is that I cannot make her well. I can walk alongside of her the best I can, and I've seen her sleeping in urine in ERs, Ive seen her stop traffic with her body. She is the same person, the same daughter who I will love forever, though I may not like how things are, it's imperative to respect the person. I have learned to embrace what you said here: "If you had talked to this woman, as I did, you would want to wrap her up in your arms and tell her everything's going to be okay. But I couldn't do that because it's not true."
I am learning that I will simply love my daughter forever, and that it's okay if things are not okay.
It's important to support a person without wanting to control a person, or their life. I want the best life for my daughter, yet what I want for her may not be how her life is, and that is what parents need to understand. It's important to let go.
Posted by: Stephany | August 16, 2007 03:54 PM
"Here I thought I was just a little ill, but now it seems I lack the insight to know that I must be mentally retarded because of my 'defective brain.'"
Haha. I guess I should give up being a pre-medical student, then...I don't know, I guess it doesn't matter that I maintain a GPA of 4.0, or a high class rank...it appears that I, too, lack the insight as well. Who wants a physician with a "defective brain", anyway?
I guess someone should kindly tell the doctors mentioned in this: http://pn.psychiatryonline.org/cgi/content/full/37/15/8
article that because they have a "disabled brain" they should stop their practices.
"Luckily, in 1996, some of us read a section in "Surviving Schizophrenia" by E. Fuller Torrey, M.D. - 3rd. Edition, and learned about the nature of 'lack of insight'..."
E Fuller Torrey? Oh, that explains why the tone at the site Liz mentioned is starting to sound familiar...
Sarcasm aside, I might be misusing their words...however, the tone in which they describe those of us who have this "disabled brain" is somewhat condescending. I know they mean well; in fact, I'm not completely opposed to some of their "objectives." But it bothers me that some of their words, along with the words of TAC, are stigmatizing "us" (those with "defective brains") as people who are incapable of making our own decisions.
I could go on about stigma, but I'm sure all of us are aware of its poison already.
It also bothers me that these organizations downplay some of the side-effects psychotropic medications (or for that matter, psychiatric treatment in general) have, or don't realize that these so-called side-effects can sometimes even be worse than the mental illness itself. I've known several people who are otherwise living full lives despite refusing to take medications for their mental illness.
Posted by: Al | August 16, 2007 04:13 PM
I left therapy with a psychologist in Philly who used that line on me about babies and shots and I wasn't even non-compliant or not taking meds, just talking about the trauma of being forced when in a hospital. And she was supposed to be versed in trauma care. Instead she told me about making her baby son get his vaccination as if it was the same thing.
I wish I had told her at the time that this is why I left, but back then I only knew I no longer trusted her to be my therapist.
There are family members who hate and despise their relatives with mental illness, I have met them. It is not all people who love their children and want the best for them, some of these people clearly hate the relatives they want the state to control for them.
Adults should be allowed to disown their families of origin when appropriate.
Posted by: Alison Hymes | August 16, 2007 06:57 PM
Apparently they just cut and pasted TAC propaganda directly onto their website - (their footnote says: "Copied from www.Psychlaws.org - Treatment Advocacy Center, E-News - of Friday, May 18,2007.") - but obviously they must buy into it also. The distinction between wanting what's best for a child and wanting to control them is obviously beyond their understanding. The docs know which side their bread is buttered on, though. If a parent with an income and financial resources comes wanting to lock up a child who obviously has no independent income of their own, do they really care if the parent might really have as much or more of a "defective brain" than their child? I think it's often just all about money.
Anyway, that "work the system" phrase really irked me as well. I think of that phrase as describing someone who's trying to get something from the system, not some innocent person trying to avoid incarcaration. If a person committed no crime, why should they even need to "work the system" just to remain free?
Many parents obviously do have their child's best interest at heart, (as illustrated by the woman mentioned in this post), but others unfortunately do not. There should be some services available to the mother and son described in this post, but I think those services should be less force-oriented and more persuasion-oriented. Yes, the son needs some help, but if that help is delivered in an inhumane way it can be worse than useless.
The system should not lend itself to being so easily manipulated by control-oriented sociopaths who just like having someone else under their thumb, or who see their relative's distress as an opportunity to make a name and a career for themselves.
Posted by: Kent | August 16, 2007 09:30 PM
somewhat related to the ongoing discussion, I wonder if anyone has opinions either way about the more recently introduced (in the last 2? years) mental health power of attorney?
Posted by: Ab | August 17, 2007 12:55 AM
TAC's adherents have even co-opted a word to pathologize what they consider to be a lack of insight, Anosognosia. Sadly, where the mental health system often fails to respond to individual needs and respect individual strengths such as intelligence, many consumers are considered to suffer from anosognosia a priori. Part and parcel of this tragedy is that consumers are now considered ill if they fail to accept "their" diagnosis, reject the limitations imposed by it and/or take medications.
It continues to amaze me that mental health consumers are reputed to be able to "work the system" despite being claimed to have damaged brains. How can people who hold such beliefs ever engage in a meaningful dialogue?
Anosognosia from Wikipedia - "Anosognosia is a condition in which a person who suffers disability due to brain injury seems unaware of or denies the existence of their handicap. This may include unawareness of quite dramatic impairments, such as blindness or paralysis." http://en.wikipedia.org/wiki/Anosognosia
Posted by: Joe | August 17, 2007 11:47 AM