A friend of mine, Pia, sent me a link to a feature article, published in the Danish newspaper Politiken on April 5th, 2002. The article thus isn't exactly written yesterday, and a lot has happened, also in regard to the article's subject, since it could be read in the newspaper. Nonetheless, I don't think it has lost any of its actuality, and I agree with Pia, that the subject ought to be discussed more in length.
"Historien om Lone" (Lone's Story) is the feature article's headline, while it actually is the story of Luise Hjermig Christensen, who died in 2005, a good three years after this article had been published. Back in 2005, the professionals, successfully, tried to explain away and cover up Luise's death as a result of an epileptic fit. While Luise never had a diagnosis of epilepsy, and most probably died from neuroleptic intoxication.
WHAT HAD HAPPENED?
Luise, a "cautious and poetic girl", as her mother describes her in her article, came into contact with psychiatry in 1992 when she was 19 years old. Luise had had "support universes" for a long time, and they'd never caused her problems. Which made her and her mother contact psychiatry was that she'd also started to hear voices, once in a while.
Luise was admitted to the psychiatric ward at Rigshopitalet/Copenhagen, for a "shorter evaluation", "most likely without any medical treatment to be applied", as she and her mother Dorrit Cato Christensen were told at the admission. since Luise wasn't plagued.
When Dorrit Cato Christensen came to see her daughter the following day, she found Luise lying on the floor, medicated to an extent that she was unable to rise. No one at the ward was willing to help, Luise's mother was told that Luise had collapsed on the floor many times throughout the past 24 hours, and that she probably fell deliberately in order to attract attention. Dorrit Cato Christensen was not able to get in touch with any doctor at the ward, and, as she puts it, she almost felt chased away by the staff.
Five days later Luise was transferred to Sct.Hans hospital, a psychiatric institution at Roskilde. (Those of you who maybe have read the Norwegian author Amalie Skram's autobiographical novel "Under Observation": this is it. And no, nothing much has really changed - not to speak about improved - since those days.)
Dorrit Cato Christensen there mentioned her concern about Luise being medicated with high dosages of neuroleptics, especially since Luise previously had had severe adverse reactions to anti-convulsants. The psychiatrist told her that "Luise was being medicated correctly".
Despite of "correct" medication, Luise's condition worsened rapidly, and four days after her transferral to St.Hans, after only twelve days under psychiatric "care", she suffered from Neuroleptic Malignant Syndrome.
Subsequently, and as a result of this, Luise's behavior changed to the worse. Luise had never been aggressive. She became now. Her pleasant-to-be-in support universe "Øerne" (the islands) became supplemented by the extremely unpleasant "Tunnellerne" (the tunnels), something her mother right on interprets as a reaction to the traumatization the "treatment" by psychiatry had caused her daughter. While the system chose to react with even more aggressive medication, further traumatization.
Which, in the end, made the ruination of Luise's life inevitable, was that she came to set her room at the locked ward, where she was held back, on fire. Probably because she, heavily medicated as she was, fell asleep while smoking. Nevertheless, the staff claimed the arson had been intentional, and in court Luise pleaded guilty, as she at that time did concerning anything, including having killed her 150 children in the U.S. ... Which brought her in an indeterminate treatment sentence.
The long and the short of it is that Luise had an adverse reaction to an injection with Risperdal - she'd continuously refused to take medications, saying they were killing her, so she was forcibly injected, although her journal clearly stated that she couldn't tolerate Risperdal - and died 17 hours later in 2005 at Amager hospital. She was on nine different medications at that time, among those four different neuroleptics and two sedatives. The responsible psychiatrist stated she'd been undermedicated at St.Hans. During all in all three years of hospitalization until 2002, Luise had been forcibly medicated about 200 times, sometimes up to 20 days on end, her mother tells in the article.
At the time of Luise's death, the responsible psychiatrist was about to be employed in a leading position at the Patients' Complaint Board, where his/her task was to assess the validity of claims similar to the one Dorrit Cato Christensen filed against him/her. The Patients' Complaint Board did see no reason to defer the employment until the case was settled. The NHS of Denmark later stated, that the psychiatrist had acted correctly, while this settlement partly was based on false information about Luise's death being caused by an epileptic fit, as the hospital-staff claimed to begin with. This was later on invalidated, though without effect on the NHS' settlement of the case... So, it has to be assumed, that the psychiatrist in question still is employed at the Patients' Complaint Board, assessing the validity of claims similar to the one filed against him/her. And if I knew who this person is, the name might stand here, capital letters, as a warning against an incompetent psychiatrist. But I don't know this person's name.
"Might" because Luise's case unfortunately isn't an isolated one, as one immediately might believe. Just as little as the responsible psychiatrist represents an isolated case of incompetence among otherwise more or less competent colleagues.
EXPERTS IN THE HUMAN PSYCHE
To return to the feature article: I widely agree to Dorrit Cato Christensen's evaluation of the mental health system. Though not to all of her views. Thus she states that "[p]sychiatrists are experts when it comes to the human psyche."
That psychiatrists would be experts in the human psyche, on an existential level, can a single glance at the history of psychiatry expose to be a misconception. Psychiatrists are medical doctors, their interest thus is of a purely biological, physiological - mechanical - kind. The human nature, on an existential, philosophical level, is of no interest to them. Except for people like Loren Mosher, R.D.Laing or Grace Jackson. And in regard to these people, one has to conclude that their interest for the human nature is of a philosophical kind, not of a psychiatric one.
Real experts in the human psyche are rarely found among psychiatrists. If ever they're found among "professionals", they're most likely found among people with a humanistic background, such as psychologists and the like.
"The healers, the morale builders, that I've ever found, were very rarely among mental health professionals. They were outside of that. And the only ones who were, were again people who sort of were rebels and resisters. And a lot of the best healers that I knew when I was going to graduate school, or folks I knew who were psychiatry residents, they quit, because they just did not fit in. They felt incredibly alienated from this kind of mechanical, non-healing model that they were socialized and trained in", Bruce Levine said at a talk on his latest book "Surviving America's Depression Epidemic" at Amherst/Mass., on March 25th, 2008.
Psychiatrists aren't experts in the human psyche, and they're just as little experts in the human brain. Neurologists are the true experts in the human brain. "They [psychiatrists]" do not "know how the different medical drugs impact the various centers of the brain," other than vaguely. Why they feel their way. At the expense of their clientele, who, because of their position as being out of their minds, and not fit to make decisions of their own, far more easily than anyone else can be made guinea pigs, if the occasion should arise, even against their expressed will - the will of an individual who is labelled not accountable for his actions, by definition is without value, and may be ignored without consideration.
By the way, something of a paradox in regard to advance directives, that usually contain a paragraph asking you if you're willing to participate in trials. In addition to the paragraph about treatment, that is. All psychiatric "treatment" is nothing but one great big trial.
More information on psychiatry's "expertise" in regard to its definitions of and "treatment" measures available for "mental illness" can be found here. And no, nothing has come up since 2003 that could satisfy psychiatry's honour.
WORDS - ONCE AGAIN
I neither agree in Dorrit Cato Christensen's wording. Without doubt, her daughter was a very "cautious and poetic girl", a sensitive and vulnerable person. But this didn't make her a "sick" - in her head, or a "schizophrenic" person. Those adjectives are used by society and its executive psychiatry only and solely to justify the mental health system's way of steamrolling very sensitive and vulnerable people. To justify a sledgehammer to crack a nut. They are only and solely used in order to dehumanize, deprive the so-labelled human beings definitely of their humanity.
Those adjectives are used in order to explain away "maladjusted", inconvenient to society, behaviour, and in order to escape, to disclaim all responsibility for the fact that there are individuals who do not thrive in society and therefor have to withdraw into support universes. Especially if these individuals haven't got any tools to sublimate their discontent, and give it expression in another for them creative, constructive, and for society acceptable way.
Sensitive and vulnerable a person becomes whose feelings have been hurt. The more continuously and violently a person's feelings get hurt, the more sensitive and vulnerable this person becomes. That Dorrit Cato Christensen doesn't brush aside her daughter's support universes as a "symptom" of meaningless madness, as psychiatry as well as most relatives usually do in these situations, deserves credit. Nonetheless, she too navigates elegantly around regarding them as anything else than a reaction to the "treatment", her daughter has been exposed to in the mental health system. Which they undoubtedly also are. Also. The support universes do exist already before Luise's acquaintance with psychiatry, and thus can't have become a necessary refuge only because of this acquaintance. Something in Luise's life story has made support universes a necessity, already before she meets with psychiatry: sensitive and vulnerable individuals are individuals whose feelings have been hurt.
That Luise's flight into the support universes assumed the dimensions it did, and that the support universes increasingly reflected her traumatization induced by psychiatry, is not an isolated phenomenon. According to John M. Friedberg psychiatric "symptoms" imply resistance. "Can resistance be overcome by torture? Obviously", he states. Though, before the resistance is overcome, the individual, its humanity, destroyed, torture increases the resistance, the "symptoms" worsen, qualitatively and quantitatively.
Last but not least I do not at all agree to "that most [people in crisis] need medical treatment". Apart from the in Denmark well-known "Vestlaplandsmodellen", there are internationally several similar projects and studies that show the opposite, that actually prove medical "treatment" to often chronify crisis, and thus prevent full recovery. While individuals who escape medical "treatment" often achieve full recovery.
THE TIP OF THE ICEBERG
Luise's case is not an isolated case. It's the tip of the iceberg. The iceberg, psychiatry, the mental health system as a whole is. Close contact with psychiatry can be life-threatening. Both ECT and psychotropic drugs are brain damaging. Individuals who are exposed to neuroleptics on a long-term basis do by now have a by 25 years reduced life expectancy compared to people who do not take these drugs. Long-term "treatment" with lithium often damages the person's kidneys. SSRIs make people suicidal, and harm unborn babies, if taken by their mothers under pregnancy. Uncountable individuals have died as a result of restraints. Coercion in general is profoundly traumatizing. And last but not least do most of the individuals who are labelled with "severe mental illness" end up on disability, as revolving door patients, and at drop ins and halfway houses: warehoused in a safe distance from the community, with the help of "treatment", "medicine", effectively prevented from drawing attention to themselves, deprived of their voice, their dignity, their humanity, and of any possibility to ever regain these. The delayed, undramatic and almost invisible killing we never learn about in the media, and which takes place in a safe distance from society. Every day. Uncountable times. Everywhere in this world. Also in Denmark.
Psychiatry as an institution is very well aware of that its task is no other than to relieve society from those individuals who react more sensitively and vulnerably to society than this society's normality is willing to accept, even if it costs the individual's life. Otherwise the Patients' Complaint Board without doubt would have upheld Dorrit Cato Christensen's contention on Luise's "treatment".
FIGHT FOR FREEDOM
Luise fought to a finish against the superiority, and for her humanity, her life, herself. But the more she fought the more the system punished her. The punishment covered up as "treatment", "help".
In a psychiatric context an individual's fight for his humanity is an "illness" that needs to be "treated", suppressed, even if it costs the individual's life. Just as it in the U.S. once was considered an "illness" when a slave ran away from slavery. It was the slave who was ill, not a society that made human beings slaves and denied them their dignity as human beings because of the colour of their skin. Also the "ill" slaves were punished severely, in order to "cure" them, and also this often cost the individual's life.
Luise never had a chance, she never arrived at the insight that saved for instance Judi Chamberlin's life: "Well, I've been a good patient, and I've been a bad patient, and believe me, being a good patient helps to get you out of the hospital, but being a bad patient helps to get you back to real life."
When reading "Lone's story", it strikes me again how close I myself have been to losing my life, to being killed. Literally or figuratively. I am rather rebellious by nature, just as Luise was. And crises, well, those have exactly been the periods in my life when the rebellious took over control, over "reason", when the least violation of my humanity, the least assault on myself resulted in violent and spontaneous protest reactions. In a psychiatric context this might very well have cost me my life.
A final note: About 10%, if not more, of the general population do hear voices (have hallucinations) once in a while, and I assume a somewhat just as high percentage does have what you might call "support universes" to withdraw to in extremely stressful situations. If any of this could be diseased at all, which I don't think it can, the completely natural self-preserving mechanism it is, it would be a possible suffering due to the experience of these self-preserving mechanisms. Luise did not suffer. At least not previously to her fatal acquaintance with psychiatry.
Wednesday, 21 May 2008
Tuesday, 20 May 2008
Did you know about NIDS?
Curious as I am, after listening to Larry Simon's interviews with Grace Jackson, I of course went on a Google search - and found this transcript of a lecture Dr. Jackson held at Birmingham City University in 2004.
Scary stuff, presented in a very intelligible way, and with just the right amount of - black - humour ("It’s probably such a long word that this is why the doctors don’t often say it!", "But these are what doctors frequently don’t tell their patients about, or perhaps they think it doesn’t happen so often.") to make it a treat to read, in spite of the "message".
Putting together a reply to a mail, I'd just been thinking about "informed consent", and the National Health Service of Denmark's recent statement that full information to patients on side effects wasn't always appropriate and desirable, since it might cause patients to refuse medical treatment, before I came across this transcript. Well, as I wrote in my mail reply, I can vividly imagine which are the medications the least information on side effects will be provided for, or, to put it in another way, who are the people, who will be least informed... Also in future.
Frankly speaking, this is totalitarian to me. Especially since it is a proven fact, that anything else, even no treatment at all, actually has better long-term outcomes than medication when it comes to emotional crises.
So, go and get informed, and think twice before you say "yes" to any psychotropic drug you're offered! If you're given a choice, that is.
(Geez, since we apparently don't have any professionals with the same expertise as Grace Jackson - or should it be that they just don't want us to know??? - I will have to do something about this, at least summing it up somehow in Danish, one of these days.)
Scary stuff, presented in a very intelligible way, and with just the right amount of - black - humour ("It’s probably such a long word that this is why the doctors don’t often say it!", "But these are what doctors frequently don’t tell their patients about, or perhaps they think it doesn’t happen so often.") to make it a treat to read, in spite of the "message".
Putting together a reply to a mail, I'd just been thinking about "informed consent", and the National Health Service of Denmark's recent statement that full information to patients on side effects wasn't always appropriate and desirable, since it might cause patients to refuse medical treatment, before I came across this transcript. Well, as I wrote in my mail reply, I can vividly imagine which are the medications the least information on side effects will be provided for, or, to put it in another way, who are the people, who will be least informed... Also in future.
Frankly speaking, this is totalitarian to me. Especially since it is a proven fact, that anything else, even no treatment at all, actually has better long-term outcomes than medication when it comes to emotional crises.
So, go and get informed, and think twice before you say "yes" to any psychotropic drug you're offered! If you're given a choice, that is.
(Geez, since we apparently don't have any professionals with the same expertise as Grace Jackson - or should it be that they just don't want us to know??? - I will have to do something about this, at least summing it up somehow in Danish, one of these days.)
Friday, 16 May 2008
"What part of No don't you understand?"
I just recently saw this phrase quoted again, this time in Judi Chamberlin's article "Confessions of a non-compliant patient" which I by the way found to be one of the most powerful and encouraging writings on the matter.
Although time spent on the investigation of the mental health system truly is some of the time when this question makes itself most extremely felt, there are other moments in life, that make one want to quote it.
Thus, the other day I received a, very politely and almost flatteringly worded (I guess, this is how it works...), request to review a website and some products in my blog. I turned down the request just as politely but firmly, since I a) "on principle and without exception don't do commercial reviews" (as I stated in my refusal) nor anything only remotely reminding, "since it would be doing the same as I accuse others of doing". I am a blogger without sponsor, and I intend to remain so, adamantly!
Well, and since I b) actually are snowed under with work as it is. While I prefer to choose the work, I become snowed under with, myself.
Now, my No wasn't taken for an answer. A follow-up mail today spammed my inbox, which, although this one, too, being very politely worded, almost made me forget my manners...
So, believe me, a No from me is a No! Anyone having a hard time getting it: look it up.
Although time spent on the investigation of the mental health system truly is some of the time when this question makes itself most extremely felt, there are other moments in life, that make one want to quote it.
Thus, the other day I received a, very politely and almost flatteringly worded (I guess, this is how it works...), request to review a website and some products in my blog. I turned down the request just as politely but firmly, since I a) "on principle and without exception don't do commercial reviews" (as I stated in my refusal) nor anything only remotely reminding, "since it would be doing the same as I accuse others of doing". I am a blogger without sponsor, and I intend to remain so, adamantly!
Well, and since I b) actually are snowed under with work as it is. While I prefer to choose the work, I become snowed under with, myself.
Now, my No wasn't taken for an answer. A follow-up mail today spammed my inbox, which, although this one, too, being very politely worded, almost made me forget my manners...
So, believe me, a No from me is a No! Anyone having a hard time getting it: look it up.
Thursday, 15 May 2008
Labels vs. your own story
I originally wrote the below post for Outsideren's blog, where you can view it here. The below version of the post is a slightly edited and expanded one of the original. "Epidemic" relates to my earlier post at Outsideren's blog "Er epidemien biologisk eller kulturel?" (Is the epidemic biological or cultural?), which is (not) a review of E. Fuller Torrey's book "The Invisible Plague. The Rise of Mental Illness from 1750 to the Present". The reason for me to mention the cat in my comment on Gianna's post is that Fuller Torrey advocates a theory about close contact to cats, especially their droppings, being the cause of "schizophrenia". Many things can be said about this man, but he certainly doesn't lack imagination!
Diagnoses, life stories and some more epidemic
Gianna did it again (so good to see, that she anyway is up to share her pearls!): she wrote another thought provoking post.
Apropos of epidemic: yes, also the number of grown-ups labelled "bipolar" has increased throughout the past about 15 years - in the U.S. Maybe the U.S.-American version of "bipolar disorder" is more infectious than the one that attacks people in other parts of the world?? An especially infectious variant of the virus?? Do I really dare to go on a trip to the U.S. (hopefully next year) and drop in at some of the most infected places such as Freedom Center and MindFreedom under these circumstances?? I can vividly imagine all the Outsiders draw back in terror: "Get thee hence, until we're sure you aren't infected!" I wonder, when would that be? The day I'd drop dead without ever having been the least "manic"?? Uhm.
However, it seems it isn't that much about an epidemic in "bipolar disorder" as it is an epidemic in what you might call "psychiatric bipolar-diagnozing-madness", a subtype of OCD that, as the name implies, only affects (infects) psychiatrists - in the U.S. So, no fear, unless you're a psychiatrist - living in the U.S.!
The magnitude of the U.S.-American "bipolar"-explosion is about 100%. That is, the number of "bipolar" labelled people has doubled throughout the past 15 years. A recent study now suggests that 50% of all people labelled "bipolar" are misdiagnozed. The actual rise in the cases of "bipolarity" thus is - let's see - 0%. I guess, I can safely go on my trip...
Well, among several other thoughts, Gianna's post for my part provoked some thoughts on labels, and I commented:
"Labels, well, I haven't been labelled officially, but if, it would "without any doubt" have been a "schiz"-label. It helped in one single regard: through my knowledge of the ideas and experiences of people like Lacan, John Weir Perry, Laing or anyone else who ever has tried to understand what really is the nature of the problems, psychiatry fancies to label "schiz" (and that's that - no further understanding required), I finally was able to ask myself the right questions and get to know myself a lot better, which on its part got me on the road to recovery. In any other regard I experience the label as an assault on my humanity. Actually, while in a state of acute sensitivity, I wasn't even able to write down the word (I virtually couldn't get the pen down on the paper or hit the keys), not to speak of having to listen to my therapist saying it, without feeling myself, or: my self, being reduced to something near zero. A trauma on top of a trauma.
Neither here: no family history of "madness". Only an abusive, over-controlling mother (whom I haven't forgiven: kids mean responsibility, also the responsibility to critically examine one's qualifications as a parent from time to time, especially when things start to go wrong), and an evasive, absent father - the "classical" setting, you might say. But, oh, I almost forgot: we did have a cat!..."
Now, my reluctancy toward the label hadn't escaped my therapists attention. As we all, my therapist included, know, "lack of insight" is a widespread "symptom" of exactly this "disease". The word wasn't said but a very few times. As the aim in this, therapeutic, context wasn't, as it unfortunately often is in a psychiatric context, to get me definitely reduced to something near zero.
But: of course, even in this, therapeutic, context the "insight" had to be checked for and preferably attained. So, my peace of mind in regard to this matter was continuously disturbed: "What do you think, your problem might be?", "Do you think, it might be severe?" And so on, and so on, in the same style. I stood my ground for weeks: "I don't know.", "No idea." All the while I became increasingly annoyed: "Why don't you just stop lumbering me! Say it yourself if you think it needs to be stated!" But, nah nope, that wouldn't have done in regard to the "insight", would it?!
About at the same time when I was working up my comment on Gianna's post, also Pablo sat and wrote his own comment:
"(...) Everyone needs to make sense of their own life. Human beings are creatures that occupy time as well as space - other creatures live much more in the moment with little sense of past and future. We need to construct a topography of time, a map of life, and this is our story. This is where our fascination with stories and storytelling comes from - this need to map time and locate ourselves within it.
A diagnosis is a substitute for a personal narrative. It’s an attempt to give someone a story when they can’t make sense of their own, but it’s inherently unsatisfying. It puts that person in a box and makes the individual fit the story instead of the story fitting the individual. Part of the recovery process is the process of reclaiming your own story - the story that makes sense of your life, not someone else’s. (...)"
I want to complement Pablo's comment with Grace Jackson's answer to Larry Simon's question about the causes why emotional crises that often lead to lifelong, chronic "illness". Apart from mentioning both social and biological (drug-related) causes, Grace Jackson talks about psychological causes of a chronification of crisis: "...it can become very attractive to a person who has no other identity in life, or no other - capital M - Meaning, an existential reason for existing, to actually assume some role which is giving meaning not only to oneself but to others. So, if I in fact become important to Nanny or to Chad, or become important in my family, or become important to my psychiatrist, because I assume this role, which everybody says I have, and I am assuming certain value because of accepting that label, then there are psychological reasons for having it be lifelong, or more chronic."
By the way, Larry Simon's so far two interviews with dissident-psychiatrist Grace Jackson are real highlights in his series of also otherwise exceptionally interesting and worth listening to radio-blog shows "Stories We Live By". Find and enjoy them here.
Annoyed, afraid and angry, and incapable of writing down the word I became because I, who all my life had been living others' stories, exactly the moment I'd started to claim my own story, once again was asked to live someone else's story - and renounce my own one.
To ask for "insight", the way the system does, i.e. via the identification with a label, is the same as to ask the individual in crisis to reduce him-/herself to something near zero. Once again.
I gave in, then. It hurt unspeakably. Even though the context as mentioned wasn't "official". And even though I deep down did as I've always done whenever self-reduction, or more precisely: self-denial, has been demanded from me, and shouted to myself: "NO!!!" No deep down "no", no matter how loud it is shouted, can ever make the written word unwritten. When I'm writing, I'm writing my own story. I'd been asked to write the word, and thereby someone else's story, into my own story. Once again. A trauma on top of a trauma, to quote Dianne.
Diagnoses, life stories and some more epidemic
Gianna did it again (so good to see, that she anyway is up to share her pearls!): she wrote another thought provoking post.
Apropos of epidemic: yes, also the number of grown-ups labelled "bipolar" has increased throughout the past about 15 years - in the U.S. Maybe the U.S.-American version of "bipolar disorder" is more infectious than the one that attacks people in other parts of the world?? An especially infectious variant of the virus?? Do I really dare to go on a trip to the U.S. (hopefully next year) and drop in at some of the most infected places such as Freedom Center and MindFreedom under these circumstances?? I can vividly imagine all the Outsiders draw back in terror: "Get thee hence, until we're sure you aren't infected!" I wonder, when would that be? The day I'd drop dead without ever having been the least "manic"?? Uhm.
However, it seems it isn't that much about an epidemic in "bipolar disorder" as it is an epidemic in what you might call "psychiatric bipolar-diagnozing-madness", a subtype of OCD that, as the name implies, only affects (infects) psychiatrists - in the U.S. So, no fear, unless you're a psychiatrist - living in the U.S.!
The magnitude of the U.S.-American "bipolar"-explosion is about 100%. That is, the number of "bipolar" labelled people has doubled throughout the past 15 years. A recent study now suggests that 50% of all people labelled "bipolar" are misdiagnozed. The actual rise in the cases of "bipolarity" thus is - let's see - 0%. I guess, I can safely go on my trip...
Well, among several other thoughts, Gianna's post for my part provoked some thoughts on labels, and I commented:
"Labels, well, I haven't been labelled officially, but if, it would "without any doubt" have been a "schiz"-label. It helped in one single regard: through my knowledge of the ideas and experiences of people like Lacan, John Weir Perry, Laing or anyone else who ever has tried to understand what really is the nature of the problems, psychiatry fancies to label "schiz" (and that's that - no further understanding required), I finally was able to ask myself the right questions and get to know myself a lot better, which on its part got me on the road to recovery. In any other regard I experience the label as an assault on my humanity. Actually, while in a state of acute sensitivity, I wasn't even able to write down the word (I virtually couldn't get the pen down on the paper or hit the keys), not to speak of having to listen to my therapist saying it, without feeling myself, or: my self, being reduced to something near zero. A trauma on top of a trauma.
Neither here: no family history of "madness". Only an abusive, over-controlling mother (whom I haven't forgiven: kids mean responsibility, also the responsibility to critically examine one's qualifications as a parent from time to time, especially when things start to go wrong), and an evasive, absent father - the "classical" setting, you might say. But, oh, I almost forgot: we did have a cat!..."
Now, my reluctancy toward the label hadn't escaped my therapists attention. As we all, my therapist included, know, "lack of insight" is a widespread "symptom" of exactly this "disease". The word wasn't said but a very few times. As the aim in this, therapeutic, context wasn't, as it unfortunately often is in a psychiatric context, to get me definitely reduced to something near zero.
But: of course, even in this, therapeutic, context the "insight" had to be checked for and preferably attained. So, my peace of mind in regard to this matter was continuously disturbed: "What do you think, your problem might be?", "Do you think, it might be severe?" And so on, and so on, in the same style. I stood my ground for weeks: "I don't know.", "No idea." All the while I became increasingly annoyed: "Why don't you just stop lumbering me! Say it yourself if you think it needs to be stated!" But, nah nope, that wouldn't have done in regard to the "insight", would it?!
About at the same time when I was working up my comment on Gianna's post, also Pablo sat and wrote his own comment:
"(...) Everyone needs to make sense of their own life. Human beings are creatures that occupy time as well as space - other creatures live much more in the moment with little sense of past and future. We need to construct a topography of time, a map of life, and this is our story. This is where our fascination with stories and storytelling comes from - this need to map time and locate ourselves within it.
A diagnosis is a substitute for a personal narrative. It’s an attempt to give someone a story when they can’t make sense of their own, but it’s inherently unsatisfying. It puts that person in a box and makes the individual fit the story instead of the story fitting the individual. Part of the recovery process is the process of reclaiming your own story - the story that makes sense of your life, not someone else’s. (...)"
I want to complement Pablo's comment with Grace Jackson's answer to Larry Simon's question about the causes why emotional crises that often lead to lifelong, chronic "illness". Apart from mentioning both social and biological (drug-related) causes, Grace Jackson talks about psychological causes of a chronification of crisis: "...it can become very attractive to a person who has no other identity in life, or no other - capital M - Meaning, an existential reason for existing, to actually assume some role which is giving meaning not only to oneself but to others. So, if I in fact become important to Nanny or to Chad, or become important in my family, or become important to my psychiatrist, because I assume this role, which everybody says I have, and I am assuming certain value because of accepting that label, then there are psychological reasons for having it be lifelong, or more chronic."
By the way, Larry Simon's so far two interviews with dissident-psychiatrist Grace Jackson are real highlights in his series of also otherwise exceptionally interesting and worth listening to radio-blog shows "Stories We Live By". Find and enjoy them here.
Annoyed, afraid and angry, and incapable of writing down the word I became because I, who all my life had been living others' stories, exactly the moment I'd started to claim my own story, once again was asked to live someone else's story - and renounce my own one.
To ask for "insight", the way the system does, i.e. via the identification with a label, is the same as to ask the individual in crisis to reduce him-/herself to something near zero. Once again.
I gave in, then. It hurt unspeakably. Even though the context as mentioned wasn't "official". And even though I deep down did as I've always done whenever self-reduction, or more precisely: self-denial, has been demanded from me, and shouted to myself: "NO!!!" No deep down "no", no matter how loud it is shouted, can ever make the written word unwritten. When I'm writing, I'm writing my own story. I'd been asked to write the word, and thereby someone else's story, into my own story. Once again. A trauma on top of a trauma, to quote Dianne.
Sunday, 11 May 2008
More recovery
"Recovery" can mean two different things: It can be the goal someone sets himself, and it can be the development that leads to this goal. The road is the goal, the saying goes. But if you lose sight of your goal while on the road, because you think, you have come as far as you can and therefor stop moving on, you, of course, won't get any further. You won't be on your way anymore.
Development, change, progress are possible throughout all life. Development, change are life. Also in regard to recovery. To end this development, for instance by thinking or making another individual think that further change isn't possible, that the end of the road is reached, is murderous.
I agree with Ron Unger, that, in order to prevent a further watering down of the concept of recovery, full recovery as a goal where the individual is completely independent from the system's support, has to remain the goal of every recovery-process.
One of the most pronounced opponents of such a definition of recovery is the pro-psychiatry-extremist E. Fuller Torrey. In an earlier post at his blog, Ron Unger has a copy of his own article "Mental health system due for radical change", that originally was published in The Register Guard, and E. Fuller Torrey's response to the article.
In his response, Fuller Torrey quotes the recovery-criteria Courtney Harding laid down for "The Vermont Longitudinal Study of Persons with Mental Illness" (1987):
• having a social life indistinguishable from your neighbor
• holding a job for pay or volunteering
• being symptom free, and
• being off medication.
(For more information on this and other long term outcome studies see Edward L. Knight's article "Recovery".)
To Fuller Torrey, especially the last point on the list is a red rag, and he writes: "If recovery means we are headed to a mental health system without medication ... we're all in trouble." Yes, because the core of the mental health system, i.e. psychiatry, has no other "treatment" measures to offer than medication, ECT and - luckily today on a very small scale - "psychosurgery", read: lobotomy. Any other treatment measures, such as talk therapy, are not psychiatric treatment measures, even if they sometimes are offered within the outer framework of psychiatric / community mental health treatment. Psychiatry would hardly be able to continue as a speciality if it were deprived of the most important of all of its available tools to practise social control with.
All in line with this, Fuller Torrey continues: "We need to save the mental health system. Don't let the self-righteous recovery zealots intimidate you. Do ask questions and stop the madness."
To Fuller Torrey and his followers "recovery" seems to be synonymous to "insight" - into being "chronically ill", of course - and the consequential "compliance" - with medical, neuroleptical "treatment", of course. To him "recovery" exactly means resigning oneself to one's fate and learning to live with "the limitations a chronic illness causes". While this, strictly speaking, isn't recovery but rehabilitation, at the most.
But since having to admit, that what is feared for is the continuance of one's profession, one's job, would be a little embarrassing, this position on recovery is justified through the assertion that any recovery-concept going beyond the limitations of rehabilitation "sets up unrealistic expectations for those who will never fully 'recover', no matter how hard they try, because their illness is so severe." (Sally Satel and Mary Zdanowicz, "The President's Mental-Health Commission in Denial")
My question in this context is, what it would be that could give anyone the right to deny everybody the chance for recovery, just because there may be some individuals, who it by the way is impossible to say will be, who never achieve complete independence from the system? Maybe it should also become generally forbidden to live life, since there always will be some individuals who get hurt doing it??...
You can achieve anything you want, another saying goes. This is so true! At least when it comes to personal development. The only limit to it is death, the biological kind, or the kind that is a result of being lead on a false trail and parked there indefinitely.
For myself I've chosen a definition of recovery, that leaves all possibilities for further development open without limitations. According to Ron Unger's criterion of independence from any kind of support, I could be referred to as recovered by now. But, can I lean back comfortably, claiming that I've learned how to live, with or without disability? Do I know how to live life? Do I know how to live with myself? Do I know how to live with the only "disability", the only "chronic illness" in regard to my way of being, I've ever had, which is that I am me? Have I learned everything, that can and ought to be learned? Have I reached the end of the road?
If "mental illness" corresponding to for instance Laing is seen as existential crisis, the self's attempt to start the development, the process, life as such is, if "mental illness" is seen as an attempt to find a way out of the trap of the false trail, and back to the road, the answer has to be no.
One of my riding trainers once told an anecdote from the Spanish Riding School at Vienna: An event was held on the occasion of the Commandant's retirement. A journalist asked the Commandant how long time it takes to learn how to ride a horse. The Commandant answered: "Yah, let me see: I had the best trainers you can imagine, was allowed to ride the most well-trained horses you can meet with, and I was talented. Under these circumstances, I'd guess at about 200 years."
I'm not recovered. I am recovering: I'm learning to live with myself. Learning to live life. I'll continue learning for, at least, the next 200 years yet - or more, since I haven't always had the same advantageous circumstances as the Commandant. And actually I enjoy being on the road!
Development, change, progress are possible throughout all life. Development, change are life. Also in regard to recovery. To end this development, for instance by thinking or making another individual think that further change isn't possible, that the end of the road is reached, is murderous.
I agree with Ron Unger, that, in order to prevent a further watering down of the concept of recovery, full recovery as a goal where the individual is completely independent from the system's support, has to remain the goal of every recovery-process.
One of the most pronounced opponents of such a definition of recovery is the pro-psychiatry-extremist E. Fuller Torrey. In an earlier post at his blog, Ron Unger has a copy of his own article "Mental health system due for radical change", that originally was published in The Register Guard, and E. Fuller Torrey's response to the article.
In his response, Fuller Torrey quotes the recovery-criteria Courtney Harding laid down for "The Vermont Longitudinal Study of Persons with Mental Illness" (1987):
• having a social life indistinguishable from your neighbor
• holding a job for pay or volunteering
• being symptom free, and
• being off medication.
(For more information on this and other long term outcome studies see Edward L. Knight's article "Recovery".)
To Fuller Torrey, especially the last point on the list is a red rag, and he writes: "If recovery means we are headed to a mental health system without medication ... we're all in trouble." Yes, because the core of the mental health system, i.e. psychiatry, has no other "treatment" measures to offer than medication, ECT and - luckily today on a very small scale - "psychosurgery", read: lobotomy. Any other treatment measures, such as talk therapy, are not psychiatric treatment measures, even if they sometimes are offered within the outer framework of psychiatric / community mental health treatment. Psychiatry would hardly be able to continue as a speciality if it were deprived of the most important of all of its available tools to practise social control with.
All in line with this, Fuller Torrey continues: "We need to save the mental health system. Don't let the self-righteous recovery zealots intimidate you. Do ask questions and stop the madness."
To Fuller Torrey and his followers "recovery" seems to be synonymous to "insight" - into being "chronically ill", of course - and the consequential "compliance" - with medical, neuroleptical "treatment", of course. To him "recovery" exactly means resigning oneself to one's fate and learning to live with "the limitations a chronic illness causes". While this, strictly speaking, isn't recovery but rehabilitation, at the most.
But since having to admit, that what is feared for is the continuance of one's profession, one's job, would be a little embarrassing, this position on recovery is justified through the assertion that any recovery-concept going beyond the limitations of rehabilitation "sets up unrealistic expectations for those who will never fully 'recover', no matter how hard they try, because their illness is so severe." (Sally Satel and Mary Zdanowicz, "The President's Mental-Health Commission in Denial")
My question in this context is, what it would be that could give anyone the right to deny everybody the chance for recovery, just because there may be some individuals, who it by the way is impossible to say will be, who never achieve complete independence from the system? Maybe it should also become generally forbidden to live life, since there always will be some individuals who get hurt doing it??...
You can achieve anything you want, another saying goes. This is so true! At least when it comes to personal development. The only limit to it is death, the biological kind, or the kind that is a result of being lead on a false trail and parked there indefinitely.
For myself I've chosen a definition of recovery, that leaves all possibilities for further development open without limitations. According to Ron Unger's criterion of independence from any kind of support, I could be referred to as recovered by now. But, can I lean back comfortably, claiming that I've learned how to live, with or without disability? Do I know how to live life? Do I know how to live with myself? Do I know how to live with the only "disability", the only "chronic illness" in regard to my way of being, I've ever had, which is that I am me? Have I learned everything, that can and ought to be learned? Have I reached the end of the road?
If "mental illness" corresponding to for instance Laing is seen as existential crisis, the self's attempt to start the development, the process, life as such is, if "mental illness" is seen as an attempt to find a way out of the trap of the false trail, and back to the road, the answer has to be no.
One of my riding trainers once told an anecdote from the Spanish Riding School at Vienna: An event was held on the occasion of the Commandant's retirement. A journalist asked the Commandant how long time it takes to learn how to ride a horse. The Commandant answered: "Yah, let me see: I had the best trainers you can imagine, was allowed to ride the most well-trained horses you can meet with, and I was talented. Under these circumstances, I'd guess at about 200 years."
I'm not recovered. I am recovering: I'm learning to live with myself. Learning to live life. I'll continue learning for, at least, the next 200 years yet - or more, since I haven't always had the same advantageous circumstances as the Commandant. And actually I enjoy being on the road!
Saturday, 3 May 2008
Recovery vs. rehabilitation
"How should 'recovery' be defined?" asks Ron Unger in his latest blog entry from April 28th, 2008, taking on the increasing watering down of the original notion of "recovery".
With Ron's kind permission, I translated his entry and posted it on my Danish blog, opposing it to the definition of "recovery" the Danish mental health system in the shape of some of its biggest (media-) hot shots propagates. In particular in the article "Recovery og rehabilitering i pykiatrien" (Recovery and rehabilitation in the mental health system) by, among others, Lene Eplov Falgaard and Henrik Day Poulsen.
"Is recovery a completely new way of managing mental illness, which the mental health system hasn't had room for previously? Or is recovery just a new word for psychiatric rehabilitation?" the article's authors (all psychiatrists) ask introductory.
Subsequently, the authors define recovery as follows:
"Recovery is described as a deeply personal, unique process, where it is aimed at, that a person can live a satisfying life, even with the limitations a chronic illness causes." (my emphasis)
Correspondingly, the article's authors conclude, that the concept of recovery is nothing but "old wine in new bottles", nothing but the mental health system's well-known rehabilitation.
That which the article describes as "recovery" is not recovery, the conclusion thereby being incorrect, Ron Unger's blog entry makes clear. His entry also makes clear, why it is so important to adhere to the original recovery-concept, without allowing neither psychiatry nor any misunderstood sympathy toward certain users' needs to water down the notion and definition of recovery.
As a follow-up to Ron's blog entry, I posted some further information and thoughts on "recovery" at my Danish blog:
The definition of recovery Day Poulsen et al. make use of in their article "Recovery og rehabilitering i psykiatrien" is borrowed from and jumbled according to "Recovery from mental illness: The guiding vision of the mental health service system in the 1990s" (pdf) by William A. Anthony. The article was originally published in Psychosocial Rehabilitation Journal (my emphasis), 16(4), 11-23. William Anthony is the executive director of the Center for Psychiatic Rehabilitation (my emphasis) at Boston University.
In his article, Anthony describes recovery as "a deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills and/or roles. It is a way of living a satisfying, hopeful, and contributing life even with limitations caused by the illness." Note that Anthony doesn't make use of the term "chronic". Nonetheless, neither he, from his position as the executive director of a state-funded institution, that works hand in hand with psychiatry, thinks, that recovery is anything else than a person learning to live with a disabling illness, that keeps him/her dependent on the services of the system (medication) for life. This short it can be said, which Anthony on his part uses several pages of extremely pathetic rhetoric to say.
According to Anthony, the difference between rehabilitation and recovery is simply this, that rehabilitation is the service the system offers to make a person recover. Thus it is the system that rehabilitates, while it is the individual who recovers. This easily rehabilitation and recovery can be made two sides of the same thing, and the concept of recovery be emptied of its original meaning - just to fill it with psychiatry's meaning, excluding the possibility of full recovery from psychosis beforehand, as psychiatry always has done and still does. With this end in view, Anthony doesn't even mind to claim, that "recovery" from physical illness or injury doesn't necessarily require becoming independent from social and/or medical services. Exactly the claim Ron Unger right on calls "deceitful and incompetent". And of course, it is exactly this definition the Danish mental health system, represented by among others Day Poulsen, conjures up from the top hat. In a desperate attempt to make the concept of recovery acceptable to the system.
Thus, both Anthony and the Danish article carefully avoid to bring up full recovery, i.e. complete indepence from the system (medication), as the ultimate goal of every recovery-process. While people like Dan Fisher either never have been "really" psychotic ("misdiagnosed"), or are wrong to believe that it can't happen at any time again, just because they accidentally (!) are capable of doing without the system's support ("medicine") for a period: Psychosis by definition is a chronic condition; full recovery is not possible.
That which for the system is problematic, unacceptable, with the recovery-concept is not so much the idea that people may be able to recover fully. The most problematic, unacceptable, is the fact that often it is everything but the medical treatment, that makes full recovery a possibility.
If it was the medication helping people to recover, the system right away would agree to full recovery being possible, even for psychosis. But it isn't. On the contrary. More often than not, it is exactly people who either avoid medication at all, or, at least, use it very economically and periodically, who achieve full recovery. The higher dosage over the longer time, the smaller the chance for full recovery becomes.
The same has to be said about the biological model, medication is based upon: The greater belief in biology, the smaller the chance for full recovery. Usually, full recovery is achieved in line with realizing which originally caused crisis, on an existential level. Without self-/awareness rehabilitation, "social recovery", is possible. But not full recovery, or which may be called real recovery.
Ron Unger's blog entry is a reaction to which Daniel Fisher expresses for instance in his article "A New Vision of Recovery: People can fully recover from mental illness; it is not a life-long process", where he certainly delimits "the Empowerment Vision" of recovery (full recovery, although...) from a "Rehabilitation View", but not without admitting medication a certain legitimacy even in context with "the Empowerment Vision". It is this reduction of demands, this stretch of the original concept of recovery, Ron Unger very rightly protests against.
It thus has to be concluded, that there is rehabilitation in the mental health system, while there is recovery beyond it. "Recovery" still isn't recognized nor accepted in the mental health system other than as a new term for rehabilitation. While the original concept more or less consistently still is denied acceptance. At the risk of sinking into oblivion. Especially if we continue to allow ourselves to be captivated by psychiatry's pathetic rhetoric.
With Ron's kind permission, I translated his entry and posted it on my Danish blog, opposing it to the definition of "recovery" the Danish mental health system in the shape of some of its biggest (media-) hot shots propagates. In particular in the article "Recovery og rehabilitering i pykiatrien" (Recovery and rehabilitation in the mental health system) by, among others, Lene Eplov Falgaard and Henrik Day Poulsen.
"Is recovery a completely new way of managing mental illness, which the mental health system hasn't had room for previously? Or is recovery just a new word for psychiatric rehabilitation?" the article's authors (all psychiatrists) ask introductory.
Subsequently, the authors define recovery as follows:
"Recovery is described as a deeply personal, unique process, where it is aimed at, that a person can live a satisfying life, even with the limitations a chronic illness causes." (my emphasis)
Correspondingly, the article's authors conclude, that the concept of recovery is nothing but "old wine in new bottles", nothing but the mental health system's well-known rehabilitation.
That which the article describes as "recovery" is not recovery, the conclusion thereby being incorrect, Ron Unger's blog entry makes clear. His entry also makes clear, why it is so important to adhere to the original recovery-concept, without allowing neither psychiatry nor any misunderstood sympathy toward certain users' needs to water down the notion and definition of recovery.
As a follow-up to Ron's blog entry, I posted some further information and thoughts on "recovery" at my Danish blog:
The definition of recovery Day Poulsen et al. make use of in their article "Recovery og rehabilitering i psykiatrien" is borrowed from and jumbled according to "Recovery from mental illness: The guiding vision of the mental health service system in the 1990s" (pdf) by William A. Anthony. The article was originally published in Psychosocial Rehabilitation Journal (my emphasis), 16(4), 11-23. William Anthony is the executive director of the Center for Psychiatic Rehabilitation (my emphasis) at Boston University.
In his article, Anthony describes recovery as "a deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills and/or roles. It is a way of living a satisfying, hopeful, and contributing life even with limitations caused by the illness." Note that Anthony doesn't make use of the term "chronic". Nonetheless, neither he, from his position as the executive director of a state-funded institution, that works hand in hand with psychiatry, thinks, that recovery is anything else than a person learning to live with a disabling illness, that keeps him/her dependent on the services of the system (medication) for life. This short it can be said, which Anthony on his part uses several pages of extremely pathetic rhetoric to say.
According to Anthony, the difference between rehabilitation and recovery is simply this, that rehabilitation is the service the system offers to make a person recover. Thus it is the system that rehabilitates, while it is the individual who recovers. This easily rehabilitation and recovery can be made two sides of the same thing, and the concept of recovery be emptied of its original meaning - just to fill it with psychiatry's meaning, excluding the possibility of full recovery from psychosis beforehand, as psychiatry always has done and still does. With this end in view, Anthony doesn't even mind to claim, that "recovery" from physical illness or injury doesn't necessarily require becoming independent from social and/or medical services. Exactly the claim Ron Unger right on calls "deceitful and incompetent". And of course, it is exactly this definition the Danish mental health system, represented by among others Day Poulsen, conjures up from the top hat. In a desperate attempt to make the concept of recovery acceptable to the system.
Thus, both Anthony and the Danish article carefully avoid to bring up full recovery, i.e. complete indepence from the system (medication), as the ultimate goal of every recovery-process. While people like Dan Fisher either never have been "really" psychotic ("misdiagnosed"), or are wrong to believe that it can't happen at any time again, just because they accidentally (!) are capable of doing without the system's support ("medicine") for a period: Psychosis by definition is a chronic condition; full recovery is not possible.
That which for the system is problematic, unacceptable, with the recovery-concept is not so much the idea that people may be able to recover fully. The most problematic, unacceptable, is the fact that often it is everything but the medical treatment, that makes full recovery a possibility.
If it was the medication helping people to recover, the system right away would agree to full recovery being possible, even for psychosis. But it isn't. On the contrary. More often than not, it is exactly people who either avoid medication at all, or, at least, use it very economically and periodically, who achieve full recovery. The higher dosage over the longer time, the smaller the chance for full recovery becomes.
The same has to be said about the biological model, medication is based upon: The greater belief in biology, the smaller the chance for full recovery. Usually, full recovery is achieved in line with realizing which originally caused crisis, on an existential level. Without self-/awareness rehabilitation, "social recovery", is possible. But not full recovery, or which may be called real recovery.
Ron Unger's blog entry is a reaction to which Daniel Fisher expresses for instance in his article "A New Vision of Recovery: People can fully recover from mental illness; it is not a life-long process", where he certainly delimits "the Empowerment Vision" of recovery (full recovery, although...) from a "Rehabilitation View", but not without admitting medication a certain legitimacy even in context with "the Empowerment Vision". It is this reduction of demands, this stretch of the original concept of recovery, Ron Unger very rightly protests against.
It thus has to be concluded, that there is rehabilitation in the mental health system, while there is recovery beyond it. "Recovery" still isn't recognized nor accepted in the mental health system other than as a new term for rehabilitation. While the original concept more or less consistently still is denied acceptance. At the risk of sinking into oblivion. Especially if we continue to allow ourselves to be captivated by psychiatry's pathetic rhetoric.
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