You mention the importance of “parental cruelty and contempt”, but there are people whose painful or even traumatic experiences have been caused e.g. by bullying at school. I think that there is a tendency to overlook the “cruelty and contempt” of people who are not our parents.
In my own case, I started being rejected by my peers at a very young age and without understanding why. E.g. at school I was the only girl who did not have any friends and was not invited anywhere by the other children.
Because of these experiences I learnt to assume that people were going to reject me and I was always surprised when they did not. I felt grateful to people who accepted me, including people who acted in an abusive way. In my 30s I had a psychotic episode when I felt rejected by a man I deeply loved and who was also my only friend at that time.
I have started unlearning the fear of being rejected by other people only quite recently (I am now in my 40s). So childhood trauma is not always caused by the behaviour of parents – it can be caused by the behaviour of other people, too, including other children. Let’s not assume that parents are always or almost always the ones to blame for people’s mental health issues.
Birdsong, books and works of art can actually help people survive. James Baldwin, who was himself a very deep writer, said:
“You think your pain and your heartbreak are unprecedented in the history of the world, but then you read. It was Dostoevsky and Dickens who taught me that the things that tormented me most were the very things that connected me with all the people who were alive, or who ever had been alive.”
Novels, short stories, plays and poems can also tell us about crucially important things we have not personally experienced.
Russian literature does speak to “people today” and one does not need a grammar school education to appreciate it. I am saddened by the idea that “people today” can be interested only in very recent films and books.
If one finds a novel too daunting, one can start from a short story. “Ulysses” is actually much more difficult than Chekhov or Dostoyevsky. “The History of the Peloponnesian War” is a historical work which should not be compared with novels and short stories. I also completely disagree with the view that Chekhov and Dostoevsky represent “right-brain maleness” and “do not speak to women”.
Topher, I really appreciate your comment. I, too, am struck by the number of people who uncritically accept the ‘autism’ and ‘ADHD’ labels. As you said, these labels are now even seen as cool and plenty of people are self-diagnosing.
“People always ask us: why do this work in suicide prevention when most of the people who die are white men? There are many answers to that.”
I am not sure if I understand this question. Does “this work” mean “racial equity” work or generally work in suicide prevention? Hopefully no one is implying that the deaths of “white” men are not a problem.
Matthew, a person can recover after being incarcerated on a psychiatric ward and forcibly medicated. I am saying it as someone who spent more than a month locked on a psychiatric ward and forcibly medicated.
But if one takes his/her own life, it is irreversible. A few years ago my brother spent 2 weeks locked on a psychiatric ward because of suicidal thoughts. His mental health has improved since that time. I am very happy that one of his friends decided to call the emergency services when my brother told her about his suicidal thoughts. My brother’s death would have been a tragedy for him and for our whole family.
Thank you, Grace! This psychiatrist was one of the coldest people I have ever met in my life. Shockingly, he is also a psychotherapist… I wanted to talk to him because I had naively assumed that as someone with a research doctorate he would realize that there was no need to keep me on “maintenance treatment”.
I have discovered one fascinating thing: most psychiatrists seem to believe that a person diagnosed with “schizophrenia” by another psychiatrist must be mentally ill, no matter how s/he is behaving. I also suspect that if a person diagnosed with “schizophrenia” strikes a psychiatrist as somehow different from typical people, this reinforces the psychiatrist’s belief that the diagnostic label must be correct.
Many thanks for your kind words, Grace! Fortunately I was not only aware that the psychiatrist was trying to scare me, but I also knew that no hospital performs ECT in my region and that in my country doctors do not have the legal right to force a patient to undergo ECT.
If I had not known about it, I would have been much more afraid of coming off my neuroleptic (ECT terrifies me much more than forced drugging).
Thank you so much for this fascinating and uplifting account of your experiences and observations. I have started reading your book “Beating Depression and Bipolar Disorder without Drugs: A Memoir of Survival in a Male-Dominated World” – it is definitely worth a read!
Years ago a psychiatrist told me that I might develop “drug-resistant schizophrenia” and get ECT if I stopped taking the neuroleptic I had been prescribed at a psychiatric hospital (where I had been involuntarily hospitalized). Until today I find it very disturbing that he mentioned ECT in order to scare me into compliance.
He also asked “Do you always talk so much?” and claimed that it was another sign of my supposed incurable mental illness.
I have not been using any psychiatric drugs for more than 10 years and I have never again experienced involuntary psychiatric treatment. I am so glad that I did not take this psychiatrist’s words seriously…
Tim, thank you so much for your very deep and insightful comment. I was diagnosed with “schizophrenia” after an episode of hearing voices and intense paranoid delusions. I was involuntarily hospitalized. It was more than 10 years ago and I have never had a relapse. I stopped using neuroleptics less than 2 months after my release from the psychiatric hospital, though psychiatrists claimed that I was incurably mentally ill.
You say: “To be sent home from hospital with the stern message that you are damaged goods beyond repair and that the rest of your life will be limited and dominated by strong medications was a devastating experience for me.” I can relate so much to it! I felt so depressed after my release from the hospital, I was sometimes having suicidal thoughts. I felt horrible on neuroleptics, as if I were no longer myself, and I had all kinds of “side effects”.
Fortunately I decided to join an online community for people diagnosed with schizophrenia (a community which unfortunately later turned out to be dominated by some very toxic people who were hostile to anyone critical of psychiatry and generally to anyone they saw as “different”) and while reading some comments I found out that it was possible to come off neuroleptics. It was incredibly empowering and liberating! I decided to come off my neuroleptic, though I could not talk about it to anyone, not even to my closest family members. It was definitely one of the best decisions I have taken in my life.
Nijinsky, I really appreciate your insightful comments. And I fully agree with you on the importance of detachment from the goals and values imposed by mainstream society. I have found a true, deep happiness and peace in a life liberated from such goals.
I am not successful in mainstream terms, I don’t have a “career”, but I am now much happier than when I worked as an academic. I have much more time for thinking and reading, for contemplating nature, for my local community. I am now poor in material terms, but this poverty does not depress me, it makes me feel a deep solidarity with people who are much poorer than me and with other marginalized people.
Van Scnassin, I do understand the main thrust of Billy’s comment. If Billy had written: “Bill Clinton turned his back on the 800,000 people murdered in Rwanda”, Clinton’s hypocrisy would still be obvious, just like his dismissive attitude towards a genocide taking place in Africa.
I find the words “800,000 blacks murdered in Rwanda” problematic because they reduce the victims to their “race”. Even “Black people” would sound much better than “blacks”. The latter word unfortunately often sounds dismissive and may even sound dehumanizing.
Anotherone, thank you for your supportive words and yes, we are in good company here! It is unfortunately so true that diagnostic people set up the diagnosed to be exploited, abused and hurt. A woman diagnosed with “schizophrenia” was recently murdered in Britain by a younger female “friend” who wanted her money: http://www.bbc.com/news/uk-england-london-63399511
Birdsong, thanks a lot and I would add that medical training certainly does not attach enough importance to empathy! Even very callous people can become doctors…
Birdsong, thank you so much for your kind and supportive words! Yes, I have already heard about narcissistic abuse and I am going to find some videos about it. The man I have mentioned is certainly very narcissistic…
Boans, I am so sorry to hear about your being homeless and your painful experiences. I can only say that unfortunately abuse and injustice can go unpunished.
I once had a “friend” who was ruthlessly exploiting my naivety and low self-esteem (damaged by my psychiatric diagnosis and other negative experiences) for several years. By the way, he knew about my diagnosis and I guess that this was one of the reasons why he decided to exploit me; he often accused me of being “paranoid”…
I finally found the strength to end my “friendship” with him. He has never seemed to show any remorse, he has never apologized for anything. I would now be in a much better financial situation if I had not been exploited by him.
For years I kept hoping that he would be punished in some way for the things he had done, but it did not happen. On the contrary, he got married (his third marriage) and seems to be happily married, he has not lost his self-confidence, he looks young for his age, he has many friends etc.
One day I realized that I simply have to accept the fact that life can be very unfair and that this man would probably never even realize that he did something really evil. Yes, evil often goes unpunished and many people actually refuse to admit to themselves that they have done something evil to another person!
Anotherone, thank you for your explanation. Yes, it may be a US thing… In my country psychiatrists seem to believe that if someone is diagnosed with schizophrenia, there is no need for any other diagnosis.
My brother has been told by psychiatrists that he does not have a mental illness, but only an unspecified personality disorder – the psychiatrists seemed to think that a patient can have either a mental illness, or a personality disorder, but not both at the same time…
KateL, you said in your earlier comment “The personality disorder-diagnosed patients may have frightened the psychiatrist who thought he or she was dealing with a machine, but the patient insisted on being seen as human…”
I am sure that you did not intend to suggest anything negative about people with other diagnoses. I just think that it is difficult to say why some people get diagnosed with personality disorders and others don’t. There are also clearly differences between countries, e.g. it seems that in my country people diagnosed with schizophrenia usually do not get any other psychiatric diagnoses.
Steve, I fully agree with you – if we describe psychiatrists as “stigmatized”, the word actually becomes meaningless and psychiatry has not only reinforced the stigma, but also given it a “scientific” veneer!
Steve, I understand why you have this association, but I would say that the psychiatric propaganda has unfortunately hijacked this word. “Stigma” and “stigmatization” are very useful terms, much better than “othering”. Some people are not merely “othered”, but perceived as tainted and reduced to the attribute which “taints” them, e.g. to their diagnosis of “mental illness”.
Erving Goffman (I know that I have mentioned him more than once in this discussion…) coined the sociological concept of stigma and as an academic interested in public health and psychiatric patients Dr. Shields should be familiar with this concept.
Discrimination is something different in nature from stigmatization, though stigmatization always leads to discrimination. Someone or some institution/organization can discriminate e.g. against women, against people over 60 or against single people, but only some groups are seen as “tainted”.
One of the crucial things about stigma is that people often desperately try to hide (if possible) attributes/experiences which lead to stigma. The fact that few people are ready to disclose their diagnosis of a “serious mental illness” or the fact that they have been to a mental hospital proves that the “mentally ill” are still a deeply stigmatized group, even one of the most stigmatized ones.
Boans, if Dr. Shields had asked: “Are psychiatric patients treated as people?”, I would have no problem with her question. But she has implied that the right of psychiatric patients to be treated like human beings is something “healthy” people can debate… I find it utterly ridiculous.
It is unfortunately true that many people have far more compassion and kindness for dogs or cats than for the “mentally ill” and generally for other human beings. It is one of the paradoxes of our world.
When I was locked on a psychiatric ward, police simply hang up on me when I called them from the public phone on the ward (my mobile phone had been stolen by some other patients). I was having delusions (e.g. on one day I became convinced that I was going to be gang-raped and murdered), but I could see that police did not even want to talk to patients from a mental hospital.
I would add that academics who want to defend truth and justice should be ready to take risks. If people are determined to avoid saying or doing something which might displease some powerful lobby or someone who might harm their career, they are not able to defend truth and justice.
If a person is determined to be “nice” to powerful people and to avoid saying anything which might “offend” or “trigger” them, s/he will never find the courage to question the status quo.
Steve, maybe this is what Dr. Shields meant, but I have doubts about it. I personally suspect that she meant negative attitudes towards psychiatric patients – the fear, discomfort and “othering” she mentions in the earlier part of the interview. By the way, I am wondering what makes her say “I hate to use the word stigma”…
KateL, unfortunately you seem to suggest in this way that patients who are not diagnosed with personality disorders do not insist on being seen as human and somehow “allow” the psychiatrist to treat them like malfunctioning machines. This is not true.
Birdsong, but have you heard about a case of a professor terminated for criticizing the mainstream views on psychiatry? I agree with you that academic freedom has limits, but I have not noticed any attempts to “cancel” academics who question biopsychiatry or the idea of forcible drugging.
And as you pointed out in another comment, we simply don’t know to what extent Dr. Shields is critical of psychiatry. There are many people who believe that they support the human rights of psychiatric patients, but who do not see involuntary psychiatric treatment and forcible drugging as a violation of human rights.
It is striking that Dr. Shields says that the approach of people frustrated by the fact that “they canât force their loved one into treatment” “can be valid”. She seems not to realize that people can try to force their partners or family members into treatment not because they care about them, but because they want to control them, punish them or even get rid of them.
Birdsong, you have put it so well in the final sentence of your comment: “But whether or not Dr. Shields holds radical ideas and is willing and able to implement them remains to be seen.” I could not agree more with you!
KateL, I agree with you that many people are not interested in talking to survivors, especially to survivors who disagree with them. I am not jumping to any assumptions, but I, too, find it strange that some authors choose not to engage with the comments on the MIA website.
Steve, I am glad that you have mentioned the apologetic tone of her critique. I am not sure if there are really psychiatrists who are wondering if psychiatric patients should be treated like human beings. I often read articles from psychiatric websites and I don’t have this impression.
I personally suspect that Dr. Shields said it without realizing that her words would sound shocking to many people.
Birdsong, I continue to find this question very strange. As I said in one of my earlier comments, can one imagine someone asking such a question about any other group?
Yes, doctors may overlook the person in front of them, but she is asking “Should we even treat psychiatric patients as people?”, not “Should we even treat patients as people?” This difference is very important.
I agree with you that psychiatrists often focus on the “illness” and not on the person, but the question “Should we even treat psychiatric patients as people?” seems to be implying that the right of psychiatric patients to be treated like human beings is somehow a debatable and controversial issue, as if we were talking e.g. about murderers or paedophiles…
Let’s not forget about something Dr. Shields says a little later: “I would love for us to get to the point where we agree these are humans…” – she means psychiatric patients.
Birdsong, one can tread carefully without portraying psychiatrists as a stigmatized group with good intentions and without calling any psychiatrists “amazing”.
You say that Dr. Shields “just got her foot in the door, which is no small feat”, but she is a professor on a tenure track, not an adjunct or a PhD student. She is not someone in a precarious position, someone who might lose her job if she says or writes something “too radical”.
Birdsong, you say “interviews have time constraints.” But this interview was long, they were talking for an hour! And I am not criticizing her merely for not addressing some issues, I am very disappointed by the things she has been saying and her general tone. Maybe she is more radical than the interview suggests, but I am not going to assume that she is.
I, too, believe in giving people a chance and this is why I patiently listened to the whole interview, though I did not find it interesting.
You ask: “And what else do you suggest when, âMost academics donât challenge the powers that beâ and âonly some academics are independent thinkersâ?”
I think that people can learn to think outside the box and to look critically at the mainstream views – to realize that these mainstream views can be questioned. I think, too, that people who do research on psychiatric patients should listen to the voices of psychiatric survivors who are very critical of the system.
Anotherone, you are making an excellent point. Professors like Dr. Shields are paid for their work and reap other benefits. In a way it is paradoxical that they often do not feel ready to engage with critical voices coming from the very group they are doing research on.
I know that one needs courage to acknowledge critical comments, but this is a kind of courage academics should cultivate.
I also fully agree with you that no one should expect an ‘A for effort’. I do hope that Dr. Shields is going to read at least some of these comments.
Steve, thanks a lot for your clarification! However, I think that it would be good for Dr. Shields to read at least some of the comments instead of assuming that everyone likes this interview…
Birdsong, let me emphasize that I have not been criticizing your approach in any of my comments.
You say: “a public interview may not be the wisest place for her to express her goals more specifically at this time.” You may be right, but I was really expecting much more from this interview.
Birdsong, but why do we actually have to meet psychiatrists where they’re at? Please compare it to research on police violence – are researchers trying to talk and write in a “nice” way about police officers?
I am not saying that Dr. Shields should attack psychiatrists, but in my opinion she portrays them in a much too positive light.
Birdsong, you say “She has every right and reason to be afraid” and “if she does take on a full-frontal attack too soon, sheâll be decidedly outgunned”.
I don’t think that we can assume without any evidence that Dr. Shields is radically opposed to the psychiatric system. In the interview she implies that psychiatrists have good intentions and she claims that she has met some “amazing” ones. She talks in positive terms about people who want to force their family members into “treatment”. She claims that the frontline staff are victims etc.
The fact that an academic chooses to do research on psychiatric patients does not necessarily mean that this academic disagrees with the mainstream views on “mental health”, psychiatric drugs etc.
As I said earlier, there are academics who are very critical of psychiatry. I disagree with your opinion that if Dr. Shields were more critical of psychiatry, she would lose her position – I don’t know any cases of professors fired for criticizing psychiatry. And if she is indeed afraid of losing her position, this means that she is going to protect her academic status at the expense of truth…
Birdsong, I have mentioned research on the negative impact of neuroleptics or on the links between traumatic experiences and “voices” as some examples of genuinely helpful academic research. In fact, it is not true that until now academia has been ignoring the experiences of psychiatric patients. Some academics have been doing crucially important research.
Birdsong, you say “it sounds like Dr. Shields has the right ideas and framework to make positive changes” and that she has the guts to take on “inpatient-coercive psychiatry”.
I disagree with you. The description of her research at the beginning of the interview has little in common with the contents of the interview. As I said earlier, the only clear idea I see in the interview is the idea of “patient experience measurement”. As to “power imbalances”, she is basically portraying “frontline staff” as “victims” and psychiatrists as a “stigmatized group”.
Dr. Shields does not question the idea of involuntary treatment and forcible drugging in this interview. As I said earlier, she talks in very general and vague terms. She does not say anything radical, unless we assume that her hope that “we” are going to agree that psychiatric patients are humans is radical…
KateL, yes, I think that Dr. Shields was referring to society in general, though I agree with you that it is not clear from the quote.
I agree with you that is a good thing that someone with lived experience is working in the system. Unfortunately people with lived experience are very often able to work in the system only if they do not challenge it in a significant way and agree with its basic tenets. And as I pointed out in an earlier comment, I think that Dr. Shields would be much more critical of psychiatry if she had been herself diagnosed with a “serious mental illness”…
Boans, it is so sad to read about your experiences with the psychiatric system. I totally agree with you – the psychiatric system can get its “prisoners” for free. And the sicker psychiatric patients are, the better it is for the system.
Psychiatrists would love to keep me on neuroleptics for life only because I had one psychotic episode more than 10 years ago. They refuse to see that I am not mentally ill, that I don’t need any “medication”. In their opinion I have an incurable illness, though I am a happy and peaceful person.
I refuse to listen to psychiatrists, but many people take them very seriously. My case proves so well that most psychiatrists are doing something very evil, even if they have good intentions…
Birdsong, thank you so much for your kind words! I agree with you on academics and other professionals. As you said, many (if not most) of them seem to feel threatened by critical comments.
I agree with you that academia has a problem with critical thinking. At the same time I think that the situation was better in the past, it seems that there were more radical academics ready to challenge mainstream views.
I feel that unfortunately academia has now become so competitive that many academics are very afraid of doing anything risky for their careers. I also have the feeling that academia rewards academics who are not rebellious, who “toe the line” even if they claim that they are on the side of marginalized people…
Gina, there are researchers who have studied psychiatric detention, including the sociologist Erving Goffman with his seminal book “Asylums” and much more recently Jonathan Metzl with his book “The Protest Psychosis: How Schizophrenia Became a Black Disease”. Surprisingly, Dr. Shields does not mention involuntary psychiatric detention in this interview.
She even speaks in a positive terms about people who “can’t force their loved one into treatment” (“Some people in some families do struggle to access the care they need, and they do perceive their biggest barrier being the fact that they canât force their loved one into treatment, and that can be valid…”).
Anotherone, unfortunately many people do not acknowledge critical comments, unless they come from someone well-known. The voices of psychiatric survivors are very often ignored if they criticize something an academic or a “professional” has said. We are usually not taken seriously.
I know that people can be genuinely too busy to reply to online comments or find them too upsetting, but people should not ignore criticism and pretend that everyone is enthusiastic.
I don’t personally expect any reply from Dr. Shields. However, I feel that you should not imply that we are somehow pestering her and that we should “give her a break”.
We have the right to express our opinion. It does not mean that we are pestering her. Let me add that Dr. Shields claims on her Twitter @MorganCShields that she has been “overwhelmed by the positive response” to this interview. This makes me guess that she has not read the comments here, or that she finds them irrelevant, or that she wants to pretend that everyone is enthusiastic about this interview.
Birdsong, is she really taking on coercive psychiatry? Is she actually saying anything which might shock or anger psychiatrists? In my opinion she is doing her best to reassure them – according to her they have good intentions and are “stigmatized”.
Dr. Shields seems to be really afraid of being labelled as “anti-psychiatrist” and of getting into conflict with other people, including psychiatrists. Of course it can be related to her being a young academic and to her being a woman – women are still expected to be “nice” and non-confrontational. But it is impossible to take on oppressive systems if one is determined to be “nice” and to avoid upsetting people who oppress others…
Birdsong, you say that the psych world is not ready for a radical approach, but I don’t think that researchers should adapt their approach to the expectations of the psych world. Why should psychiatrists be placated and reassured?
I guess that most researchers either personally embrace the mainstream views on “mental health”, or are convinced that questioning these views would be too risky for their careers.
Of course another big problem is that many researchers apply for grants in order to finance their research – Dr. Shields mentions a NIH grant – and institutions which award grants are not interested in research which challenges the prevailing dogmas.
Birdsong, researchers can do something very important – as an example, they can publish research which shows e.g. the negative impact of neuroleptics or of the ECT on the brain, research on the links between traumatic experiences and “voices” etc.
Unfortunately Dr. Shields speaks in very vague and general terms throughout the whole interview. The only clear idea she mentions is “patient experience measurement” and she calls it “the first step”. I have nothing against this idea, though I think that the words “patient experience measurement” are obfuscating the reality of mental health hospitals and implying that psychiatric patients are just as free as other patients.
You say that if she “can accomplish fifty percent of her objectives, things will have come a long way.” But what are actually her objectives apart from the idea of “patient experience measurement”? She spends much more time talking about the practicalities of her research than about her goals and ideas.
I think that there is no reason to assume that we should be happy only because an academic has decided to do research on the experiences of patients in mental hospitals. Such research can be conducted from various perspectives, including from perspectives which obfuscate the nature of the system and reinforce biopsychiatry instead of challenging it.
The fact that Dr. Shields has “lived experience” unfortunately does not necessarily mean that she is (or is going to be) ready to question the dogmas of biopsychiatry. I am wondering what she actually thinks about psychiatric diagnoses, about psychiatric drugs, about forcible drugging or about ECT. Unfortunately she talks at length and in great detail about things which are not really important.
And I feel that unfortunately some of us still have too much respect for academics and put too much hope in their research… Most academics don’t challenge “the powers that be”, only some academics are independent and courageous thinkers.
Boans, I am very sorry to hear about your experiences.
I think that one of the differences between slavery and the psychiatric system is that in many cases psychiatrists and other “mental health” staff do not have any reason to care about the physical state of patients.
Even if a patient dies (like the overmedicated patients mentioned by Dr. Shields), there are plenty of others. And even if a patient becomes severely physically disabled as a consequence of his “treatment”, he is highly unlikely to stop being a psychiatric patient.
Birdsong, she certainly deserves respect, especially for being so open about her own experiences, but I think that academics can and should be much more critical towards psychiatry and the psychiatric system. I know that it is risky, I know that it demands courage, but it is not impossible. John Read, Suman Fernando or Joanna Moncrieff are some of the best known radical critics of psychiatry inside the academia.
As long as researchers focus on the (genuinely or supposedly) good intentions of psychiatrists and nurses or of people who want to force their “loved ones” into “treatment”, they will never understand the nature of the system…
Birdsong, great to hear that you agree with me and I, too, hope that Dr. Shields is going to read our comments!
I fully agree with you – we need all the help we can get. At the same time, I find it worrying that in spite of being quite mild in her critique of the psychiatric system she is so careful to avoid the “anti-psychiatry” label. As long as academics are blocked by the fear of being labelled as “anti-psychiatrists”, they will be unable to develop a radical approach.
The risk of getting “wined and dined” by psychiatrists is unfortunately very real. Of course I am also aware that in today’s academia it is dangerous to question the mainstream views, especially if one is a young academic.
Steve and Birdsong, I really hope that the situation is not as bad as she is implying. Of course I agree with both you that Dr. Shields does not share this attitude. But when Birdsong says: “you have to start somewhere”, aren’t we forgetting about the earlier academic research critical of psychiatry?
A correction: it seems that Dr. Shields does not include psychiatrists among the “frontline staff” when she says: “I have found that frontline staff at psych facilities are, in general, enthusiastic even about my research so long as I make it very clear that Iâm not blaming them and that I think they also are victims of a very toxic system.”
However, even nurses and other workers at psychiatric facilities should not be portrayed as “victims of a very toxic system”. They have power over patients and can be very abusive, as Dr. Shields has found out herself. I completely disagree with her when she says: “Itâs not that one individual is evil at all.” Individuals can be evil. There are evil individuals among the frontline staff at psychiatric facilities.
Dr. Shields asks: “Should we even treat psychiatric patients as people? Thatâs the debate that Iâve been hearing, and thatâs unfortunate. I would love for us to get to the point where we agree these are humans…”
This is simply unbelievable – she actually claims that even the very humanity of psychiatric patients is a debatable issue. That there is no general consensus that psychiatric patients are humans and deserve to be treated like other human beings. Could one imagine someone talking in this way about any other group, e.g. Black people? I am surprised that other people have not commented on it.
As someone who has been diagnosed with “schizophrenia” AFTER getting a PhD and who now lives in poverty I also find it very ironic that Dr. Shields believes that “just having a PhD makes someone incredibly privileged”. A PhD is not enough to protect a person from unemployment, poverty and social isolation.
It is admirable that Dr. Shields speaks so openly about her painful personal experiences. Unfortunately she minimizes the harms done to patients in mental hospitals and – astonishingly – portrays psychiatrists and nurses as “victims of a very toxic system”.
Dr. Shields says: “I donât necessarily think that any single psychiatrist or necessarily an association of psychiatrists like that some patients get hurt in psych facilities.” Not only some patients get hurt – many patients get hurt, especially the involuntarily committed ones. Interestingly, Dr. Shields does not mention the problem of forcible drugging and the harmful effects of psychiatric drugs.
What makes her think that there are no psychiatrists who like hurting people or who simply don’t see their patients as equal human beings? Even if most psychiatrists were genuinely well-intentioned, most of them cause harm to their patients. Dr. Shields mentions people who have died while being overmedicated – the psychiatrists in these hospitals were clearly either very callous, or very incompetent. In any case their decisions led to people’s deaths.
The idea that “frontline staff” are victims and should not be blamed is frankly ludicrous. If everyone is a victim, we erase the existing imbalance of power and the personal responsibility of people who harm and oppress others. Psychiatrists and nurses have a great power over their patients, including the power to label people as incurably mentally ill. They are not oppressed – they are oppressing patients (even if they are doing it with a kind smile). They are responsible for the harm they cause.
Dr. Shields claims that she has met “amazing” psychiatrists: if these psychiatrists support forcible drugging and life-long neuroleptic treatment, they oppress their patients and therefore cannot be “amazing”.
Dr. Shields also portrays psychiatrists as a “stigmatized” profession. If both psychiatrists and their patients are described as “stigmatized”, this word becomes completely meaningless. Psychiatrists are not despised and feared, they do not live in poverty, they are not ostracized and isolated. They willingly agree to be psychiatrists and are paid for their work. They are not ashamed of their job and do not feel forced to hide it from others.
In his seminal book “Stigma” Erving Goffman defines stigma as an attribute which is “deeply discrediting”, which reduces a person in our mind “from a whole and usual person to a tainted, discounted one”. Psychiatrists are powerful professionals who have their own societies and academic journals and are widely seen as experts. Their views on mental health continue to be embraced by mainstream society. How can one compare them to the “mentally ill” and especially the “schizophrenics”?
I am very disappointed by this interview. I strongly suspect that if Dr. Shields had been herself diagnosed with a “serious mental illness”, she would have a much more critical approach towards the psychiatric system and towards the “frontline staff”. I also feel that most academics see the psychiatric system in a much too positive light because they usually find it much easier to relate to psychiatrists (successful professionals with a similar social status) than to marginalized people and because they tend to embrace the mainstream views on mental health and on psychiatric treatment.
Anotherone, thanks a lot for explaining your approach. Like you, I am wondering if such long reports on academic articles are actually a good idea. Maybe it would be much better to post a short summary of an academic article and a link to its PDF version in case it is available.
Just like you, I believe in epistemic justice and I fully agree with you that conversations on “mental health” tend to exclude people like us. As you said, there are very few websites like this one, websites where people who are critical of psychiatry and psychology are not being mocked and silenced.
I, too, feel that unfortunately some of the authors on the MIA website are not critical enough towards the mental health industry and towards academic articles. As it seems, one usually needs to directly experience the harms, injustices and absurdity of the mental health system and other systems which supposedly protect vulnerable people in order to have a sufficient level of mistrust towards the mainstream perspective on “mental health”…
Kevin, you have made an excellent point. Capitalism in the USA and in most of the world is very different from capitalism in some Western countries with free healthcare systems, well-developed welfare systems etc. Some capitalist countries do a lot to help vulnerable people.
Thank you, anotherone, I understand what you mean. I have also noticed the illustration which you (and KateL) had criticized in your comments. To be fair to Mr Luiggi -HernĂĄndez, he was only reporting on a study, not expressing his own views on people diagnosed with BPD.
Billy Williams III, you say “Bill Clinton who at heart was much more of a socialist than capitalist, turned his back on the 800,000 blacks murdered in Rwanda as he was president.” Why say “blacks” if one can simply say “people”? The Tutsis do not see themselves as “blacks”.
anotherone, you mention an article of “pro-misogyny pontificating” by JosĂŠ G. Luiggi -HernĂĄndez. Which article you mean? Is it still available on the MIA website?
KateL, it is disgusting that someone has dismissed your voice and experiences in this way and even claimed that you are “gaming the system”! Some very mean-spirited people leave online comments under the cover of anonymity…
Anotherone, thank you. I really appreciate the comments you have left in this discussion, including the one where you mention the despicable behaviour of this urgent care doctor.
As to “survivor spaces that prioritize the least affected”, I was perplexed when I found out that even unemployed people have to pay 50$ (or 25$ in the case of low-income countries, mainly African countries) to join the International Society for Psychological and Social Approaches to Psychosis. Membership in such organizations should be free for unemployed and other poor people with experience of psychosis.
KateL, I agree with you and I am glad that you mention it – I think that at least some of the homeless people were treated for mental illness and have experienced brain damage because of psychiatric treatment. I believe that the cognitive dysfunctions of many patients described in psychiatric textbooks and articles are usually or at least very frequently an effect of psychiatric medications and ECT.
Birdsong, good to hear that you have similar thoughts on this subject. I used the word “interesting”, but I could have used the words you used. And I, too, think that Charlotte, like so many other people, may be unconsciously or consciously biased against psychiatric survivors who are not successful middle-class people.
I am wondering why Charlotte seems to be implying that all psychiatric survivors are “service-users”. She seems to treat these two terms as interchangeable and she does not seem to realize that there are psychiatric survivors who are not involved with the psychiatric system, or who are involved with it only out of sheer economic necessity.
Charlotte reassures her readers that those who criticize psychiatry don’t think that psychiatric drugs are “evil”. Well, e.g. neuroleptics are literally toxic to the brain and many critics of psychiatry openly talk about it. And one thing is obvious: forced psychiatric drugging is evil, though plenty of people continue to find it acceptable.
I also find it interesting that Charlotte has talked only to “clinicians, academics, writers, scientists, and journalists” – to people who have successful careers and who are probably middle-class.
People harmed by psychiatry are very often poor. People who have experienced forcible psychiatric treatment are much more likely to be poor than affluent. Successful middle-class people are rather unlikely to be forced to stay in a public psychiatric ward with complete strangers while in the midst of acute distress. The most oppressed people know the most about the damage and humiliation caused by psychiatry.
I also find Stevie’s approach quite weird. As Steve said, psychiatrists are the ones who are in charge. They are even able to take away people’s freedom and force them to take psychiatric drugs. I feel that psychiatric survivors are much too often expected to be “nice” towards psychiatrists and other mental health professionals, even if there is a staggering power imbalance between the survivor and the professional.
There is no such thing as being “too critical” towards psychiatrists. As Steve pointed out, many (most?) psychiatrists don’t show enough empathy and respect to their patients.
Many psychiatrists don’t seem to care about the impact of psychiatric “treatment” on people’s lives and health. I am not saying that all psychiatrists are callous, but even those who have good intentions can ruin people’s lives.
I totally agree with you – the internet can be incredibly helpful and it is very true “that if you have enough pain in your life, you will look anywhere for the truth, even if this truth goes against what the medical system is telling you.” I felt really bad when I was taking a neuroleptic. Fortunately I registered on a forum for people diagnosed with schizophrenia and I came across a few comments by people who were saying that it was possible to come off neuroleptics.
I stopped taking them and it has been one of the best decisions in my life, maybe even the best one. I have never had a relapse of psychosis.
I personally very often feel that the system does not care about out well-being. In my country it is very difficult to get any financial support or psychotherapy even if one is a person with experience of psychosis. The only thing one can easily get are neuroleptics…
Sera, I don’t think that the difference between drugs prescribed by doctors and other drugs should be minimized. Many (if not most) people start taking psychiatric drugs because they have been told by authority figures that they need them. People start using e.g. street drugs for other reasons.
Moreover, we should ask themselves: what does it even mean that “around 20% of people will do best staying on psychotropics longer term”? “Best” in what sense? Does it mean that they will actually feel better and be happier if they stay on psychotropics longer term? And how do these researchers know it?
Let’s not forget either about the impact of psychiatric drugs on people’s physical health. People diagnosed with schizophrenia have a much shorter life expectancy than the rest of the population largely because of the effects of neuroleptics.
Of course I respect many people’s decision to take psychiatric drugs, but let’s not forget that this decision is influenced by the mainstream discourse on mental health and illness and by the opinion of psychiatrists who are very often authority figures for their patients.
cynical.nihilist, many thanks for your very interesting and thought-provoking comment. Your description of the behaviour of mental health professionals and family members at that event sounds so convincing (I had similar feelings in an online group dominated by the voices of mental health professionals and family members).
I totally agree with you on the role of environmental and lifestyle factors and the example of diabetes is excellent. The role of pharmacotherapy keeps being hugely overestimated at the expense of other treatment approaches and methods.
Steve, I fully agree with what you are saying. I would say that the assumption comes from brainwashing by the mainstream media, books and “experts”, as well as from the belief that pharmacotherapy is the best way to deal with all kinds of (real or imaginary) diseases.
Even in the case of very real physical diseases we can often observe a very naive attitude towards pharmacotherapy. E.g. many people with metastatic cancers agree to chemotherapy, including chemotherapy with the use of “experimental” drugs, in the hope that it will save their lives and despite the frequently horrible side effects. There are cases of doctors who prescribe unnecessary chemotherapy to dying patients, e.g. the British cancer specialist Justin Stebbing who was even suspended for 9 months from the UK medical register.
Ryan, let me just add that when people say “think how much worse theyâll be OFF medications!â, I feel that one of the reasons is that many people assume that having any hallucinations or delusions or any eccentric behaviour is completely unacceptable. Such people seem to think that as long as psychiatric drugs stop or at least reduce “symptoms”, the person should keep using them, no matter how horrible the effects of the drugs are.
Another misconception is that people who have hallucinations and/or delusions are always a threat to others or to themselves. This is a myth which causes incredible harm to many people all over the world.
Dear Ryan, thank you so much for all your kind words and for sharing more about your experiences!
Those who claim that people would be much worse off psychiatric medications are clearly brainwashed and misinterpreting the effects of these drugs as symptoms of a mental illness.
It is so depressing, though unsurprising to hear that your psychiatrists did not care about the impact of all these psychiatric drugs on your health (both physical and mental). I can’t understand why they put you on so many drugs, unless profit was their main motive… So sad to hear what happened to your mother’s best friend’s daughter – the risk of tardive dyskinesia was one of the main reasons why I decided to come off my neuroleptic.
The neuroleptic was Abilify in my case and fortunately I found it very easy to stop using it. I guess that it would have been much more difficult to come off it if I had been using it for many months or even years.
Great to hear that your parents have been so supportive and I fully understand why you find your dad’s gift so deeply moving.. Please don’t feel bad because of what your family has experienced. When I had my psychotic episode, it was also very stressful for my family, but the crucial thing is that I have recovered from the experience and my relationship with my closest family members has even improved since that time (e.g. I have become much more open with my mum).
Just like you, I can say that my family has supported my recovery more than anyone else – in fact, only my family supported me when I was having my psychotic episode and after my release from the mental hospital. I did not have any friends at that time (my only friendship broke down when I became severely psychotic – of course this was incredibly painful).
The only people who visited me in the hospital were my parents, my brother and my aunt. My mum visited me every day. I was very lucky because most other patients on my ward rarely, if ever, got any visits.
At the same time, I am very happy that I was able to live alone when I decided to come off my neuroleptic. In fact, at that time my mum thought that it would be dangerous for me to stop using it, though she could see all the side effects of the drug. Thanks to my situation I was able to come off Abilify without having to inform anyone about my decision. Let me add that no one in my family has ever criticized this decision and I deeply appreciate it.
Ryan, many thanks for sharing your incredibly uplifting and heart-warming story. I am so impressed by your inner strength, courage and kindness, as well as by your loving and generous attitude towards your family members. So many people resent their parents, but you write so beautifully about your dad: “I have found a way to accept my dadâs faults for what they are and have learned to love him for who he is. I no longer need that therapy that I once thought I needed.”
I fortunately experienced psychiatric drugs only as an adult, because of a psychotic episode in 2012, and coming off my neuroleptic was quite easy because I had been taking it for less than 3 months. While reading your story I realized how lucky I am… I wish all the best to you, your dad and the rest of your family.
registeredforthissite, you say that we are “failures” because we “haven’t been able to find a solution for people who suffer from problems” and because a psychiatrist or psychologist has “more power and value than us”.
I find this extremely unfair. I believe that people who suffer don’t have to take psychiatric drugs and this is what I have always said to other people. I was often attacked or simply ignored.
Let me add that I personally NEVER saw psychiatrists as gods. I never wanted any psychiatric “treatment”, I was involuntarily committed and forcibly drugged.
Why do you think that a psychiatric survivor who is unable to convince other people to stop believing in psychiatry should feel like a failure?
People who have a lot of power in a cruel, inhuman and grotesque system are not in any sense better than people who have much less power in this system. I am also wondering what makes you say that psychiatrists or psychologists have more “value” than psychiatric survivors…
Psychiatrists and psychologists are usually much more respected than psychiatric survivors because of the nature of the world we live in, a world which stigmatizes and humiliates psychiatric survivors and which highly values people with medical degrees and well-paid jobs.
Why should we feel like failures only because we are unable to change the minds of millions of brainwashed people who believe in psychiatry? We can change our own lives and – if we are lucky – the lives of some other people.
Every person who bravely resists a cruel system is not a “failure”, no matter how poor and isolated this person is.
Steve, this is very true. Many distressed people focus on their own situation, on saving themselves and only themselves. Of course this is unsurprising…
Sadly, many people never stop saying that they are unlike the “really mentally ill” and cutting themselves off from them. As you said, they don’t see that the real problem is the labeling process.
It is not at all easy to create a sense of solidarity between psychiatric survivors, especially between those who are privileged in some sense (e.g. socioeconomically) and the others. People diagnosed with serious mental illnesses are disproportionately poor and I am sure that in the case of middle-class and upper-middle class people the desire to cut oneself off from the “really mentally ill” is partially linked to prejudice towards the poor.
Joshua, a mental health system does not have to mean forced drugging, stigmatizing diagnoses etc.
As I have been saying in my earlier comments, there are many people who are not lucky enough to have a well-functioning support network. There are many people who are isolated, who don’t have real friends or who find it difficult to talk about their problems to their friends or family members.
It would be wonderful to live in a world where everyone going through a mental health crisis has loyal friends and comrades who can always offer him/her support. Unfortunately we don’t live in such a world… This is one of the main reasons why mental health issues are now so frequent.
When my brother suddenly started having suicidal thoughts, me and my other family members did not even know about it. In fact, pople can hide their most painful problems from those who can offer them support.
There are also situations when talking to someone friendly is not enough for a person going through a serious mental health crisis – a severe psychotic episode is a very good example of such a situation.
Joshua, regarding what you said about Ukrainians fighting for their lives and country: I am absolutely not saying that people can’t cope with their problems and emotions without a therapist or a support line!
I don’t personally have and have never had a therapist. I have coped with my problems and emotions in other ways. To be honest, I think that psychotherapy is hugely overrated and that many paid therapists cleverly exploit their clients and deliberately try to make the clients emotionally dependent on them.
However, people can go through situations with which they are unable to cope. Let’s not forget that many people do take their own lives… I do see it as a tragedy, unlike some psychiatric survivors.
Ukrainians who fight together for their country are in a completely different situation than people going through a mental health crisis. An individual going through a mental health crisis often feels painfully, terrifyingly alone and rejected by other people. When people are together experiencing the same situation at the same time, they can and often do support each other.
Finally, when a person is severely psychotic, simply talking to friendly people is not enough. I did talk to a few friendly people during my psychotic episode, but my hallucinations and delusions did not stop.
A severe psychotic episode is a radically different experience from e.g. a bout of depression. The mind functions in a different way during such episodes – e.g. harmless things may seem terrifying, a person may strongly believe the most horrifying things without even a shred of evidence etc. This type of psychosis is a very difficult experience and may even be traumatizing.
Joshua, yes, I know that there are such toxic family members – this is very sad.
You say that people should talk to “comrades” who are fighting for justice, but unfortunately only some people are lucky enough to have such “comrades” when they are going through a mental health crisis. Groups and networks of people critical of psychiatry exist only in some countries.
I did not know anyone with similar experiences when I was going through a psychotic episode and after my release from the mental hospital. I later joined an online community for people diagnosed with “schizophrenia”, but virtually everyone in this community believed that people with this diagnosis should be on neuroleptics. I was actually attacked by many members of this community because of my own approach…
Another problem is that only some psychiatric survivors are “comrades” able and ready to offer friendship and support to others. Today’s societies encourage people to see themselves as isolated individuals and unfortunately many survivors are not immune to this trend. Some currents of pop psychology encourage people to fully focus on themselves, their own emotions and needs while completely ignoring the emotions, needs and problems of others.
I have often noticed that psychiatric survivors can be very self-centered, convinced that their personal stories are completely unique and uninterested in other people’s lives and problems. In some cases I have seen a pattern where a person takes it for granted that as a psychiatric survivor s/he deserves others’ attention, compassion, time and energy, but is too self-centered to really notice other survivors. Such people can even get very callous and hostile towards other survivors – they clearly don’t see them as comrades.
There are also survivors who actually look down on people they see as “really” mentally ill. I remember a very ironic situation: when I said to a person that I had experienced hallucinations and delusions, she replied something condescending, implying that unlike her I was “really” mentally ill. The irony of the situation is that this person was the one who kept talking about how distressed and miserable she felt and who expected compassion from others…
It was obvious to me that this survivor had internalized the belief that anyone who has ever experienced hallucinations and delusions is mentally ill and that there is something shameful about being mentally ill. Yes, unfortunately many survivors do internalize the beliefs of the mainstream society on “mental illness”!
Joshua, I do like the idea of a Universal Basic Income. However, it is obvious that there are many people who don’t need such a guaranteed income. People who have well-paid jobs, people who own houses/apartments they can rent etc. don’t need such an income, unlike the poor.
I agree with you that people should develop their own emotional reserves, but it is difficult for many people. You say: “If someone feels that they need to talk about something or need a safe place to chill out okay. But that is NOT the mental health system.”
But unfortunately it can be very difficult or even impossible to find such a (relatively) safe place in our societies… Even if a person has loving family members, they are not always able to cope with the situation, especially if the person does not trust them.
A family member can’t stay awake for 24 hours in order to protect someone from a suicide attempt; and he or she is not always able to fully focus on the person who needs help.
As to finding someone to talk to, again it is not always easy. There are people who are isolated; there are people who don’t feel able to talk openly about their problems to family or friends.
Family members or friends can also give very bad advice to those who are suffering. Finally, they are often too busy with their own lives… I was able to help my brother during his crisis (during his stay in the mental hospital and after his release) only because I don’t have a job.
For all these reasons I don’t think that mainstream mental health institutions and professionals are completely unnecessary. In some cases they can literally save someone’s life…
Of course I agree with you that psychiatric survivors should develop their own institutions, but there are many obstacles, including the lack of funding and all kinds of internal disagreements.
Joshua, thank you for your kind words, I really appreciate them! I agree with you – a psychiatric patient has less rights than a criminal suspect, though the situation can be better or worse depending on the state or country.
I fully agree with you that the earlier one cuts them off, the better! This is what I have done myself. I am now trying to get a disability pension because I don’t have any other form of regular income, but I will never agree to use psychiatric drugs.
What you say about the CA Governor is terrifying, just like any other attempts to force the “mentally ill” to take psychiatric drugs…
I think that there is some good in the mental health system – as an example, people may need a relatively safe place when they are having suicidal thoughts or when they are severely psychotic. Sometimes a psychiatric ward becomes such a place… My brother spent some time on a psychiatric ward because of suicidal thoughts. He did not have to take any drugs and was not diagnosed with a mental illness.
I definitely agree with you that there are obvious links between eugenics, including Nazi eugenics, and today’s mainstream attitudes towards the “mentally ill”, as well as people with intellectual disabilities.
I like the way you describe the current situation: “So everyone is supposed to self-actualizing and getting on in the world. If they are not, then they need to submit to their crisis line counselor, their social worker, their therapist, or their minister. And if that is not enough, then there are drugs, and then things like ECT, TMS and Lobotomy.”
I would add that in some countries like mine the “mentally ill” are expected to submit to psychiatrists, but are not protected from extreme poverty and hunger even if they do submit to them. The system does not care about them and its callousness is horrifying.
As the Polish scholar Stanislaw Kowalik rightly pointed out, the fact that vulnerable people find it increasingly difficult to obtain any help from the authorities actually constitutes a form of extermination.
Phil, thanks a lot for your reply. It is so disappointing that you actually had to file a complaint against the ombudsman! I am happy to hear that you did have a right to a lawyer and that you finally managed to find a trustworthy one.
You are so right in saying that many people on the outside “donât know and wouldnât believe anyway what happens in a psychiatric ward” – I fully agree with you that MIA is doing crucially important work.
Phil, I totally agree with you. When I was held on a psychiatric ward in 2012 (in Poland), I was not even informed that there was a psychiatric Ombudsman who had a duty to regularly visit the wards. I have never seen this Ombudsman and I think that his visits existed only on paper…
Joshua, people can be held on psychiatric wards without their consent for much longer than a few hours. It is not the same as being in jail – one has no right to a lawyer.
When you say: “…you do your best to never put yourself in a place where anyone could give such a diagnosis. So if people approach you and seem to want to do that, tell them to go away and not to approach you again, ever.”
But you forget that many people receive a psychiatric diagnosis when they are involuntarily committed. This happened in my case almost 10 years ago. I could not tell psychiatrists to go away and not to approach me again – in fact, if I had talked to them in this way, this would have been seen as a symptom of my “illness” and I would have been surely prescribed higher doses of neuroleptics… (I was forced to take them in the hospital, just like Phil).
Rebel, you say “we do need some semblance of laws and regulations to govern both those who apply for disability, those who decide who is disabled and, also, those who do make recommendations as to the determination foe disability”.
The problem is that these laws and regulations can be very unfair for people who genuinely need help. In the case of mental/psychiatric disabilities it can be very difficult to prove that a person is “disabled enough” to deserve help.
Of course a disability should not make anyone feel worthless or inferior to others. However, if we say that literally everyone is disabled, the concept of disability loses all meaning and usefulness.
I think that we could all agree that there are people who are in good health and who don’t have difficulties with social functioning. We could also agree that among people with psychiatric diagnoses there are people who encounter very serious difficulties with social functioning.
A psychiatrist can claim that a person is not “disabled enough” to deserve a disability payment or other support. However, in many cases the psychiatrist has only a very limited (if any) knowledge about the person’s problems.
I find it easy to express myself, so psychiatrists don’t see me as “disabled enough” despite my “schizophrenia” diagnosis. They don’t understand my social difficulties or they simply don’t care about them.
I think that we have to remember that the system has not been created to genuinely help people with psychiatric diagnoses. The system does not care if they are alive or dead. If the system cared about vulnerable people, they would always receive the support they need.
To return to people who “abuse the system”, I think that they are doing it because they feel that they have no other choice.
Rebel, I agree with you to a large extent. I think, however, that if we say that “each one of us no matter our situation is both abled and disabled”, this erases the difference between people who are really struggling because of serious difficulties and others. This also erases the difference between those who are coping very well in life – having well-paid and stable jobs, owning houses and apartments, having much more money than they need, large social networks – and others.
It is obvious to all of us that not everyone is poor and/or socially isolated. Many people’s mental health issues are directly linked to their poverty or even caused by it.
If we say that every person is abled and disabled at the same time, we still have to find a way to decide who deserves help and support. Otherwise we may end up saying that no one deserves it, that people should just “try harder”, whether they are billionaires or homeless. As any of us who has ever experienced poverty knows, it is not true that we are all facing the same “problems in living”.
As to people who “abuse the system”, I don’t think that there are many affluent people who lie about being disabled in order to get some money. I guess that most of these people see the disability payment simply as their way of surviving in a very cruel society.
I agree with Harold. One can interpret the term “disabled” in a negative way, but one can also say that people with various disabilities are simply people who have difficulties with functioning in society because of their health problems or other personal features.
Disabilities are largely created by people’s environment, including society’s attitudes. To take an example, a person with experience of psychosis who is afraid of societal stigmatization can be seen as disabled simply for this reason. The necessity to hide one’s experience of psychosis or to convince others that one is not unpredictable and dangerous is a very real problem.
I would also say that if a person is expected to agree to use neuroleptics as a condition of any support, it is also an excellent example of the way society disables (and oppresses) people with experience of psychosis.
I fully agree with Steve and Christine. People have the right to the help/support they need. And there are certainly people who are disabled for mental health reasons. We should not assume that people deserve help only when their disabilities have observable or provable physical causes.
Jesse, problems can be only temporary. However, there are people who have very serious problems e.g. with social interaction or with “fitting in” all their life, since their childhood.
Disabilities include long-term mental impairments, e.g. according to the Article 1 of the UN Convention on the Rights of Persons with Disabilities.
You ask: “If one says a disability isnât caused by a physical impairment, what is then being used to determine disability?” A person can be disabled even if s/he does not have an observable physical impairment. I see two problems here:
1. Your question seems to imply that there is no such thing as long-term mental impairment. There are many examples of people who are unable to find or keep a job or even simply to look after themselves because of very serious and long-term mental health issues. I have seen many such patients when I was locked on a psychiatric ward.
2. Currently there is no way to prove that there is no physical impairment of any kind in the organisms of people who experience or have experienced psychosis. Let me use my personal example: my psychotic episode began when I was taking an anti-malaria drug which may cause auditory hallucinations. I have never experienced another bout of psychosis, though I am not using neuroleptics.
Many people use the same anti-malaria drug without experiencing any hallucinations. I am sure that for some biological reasons I was much more prone to developing psychosis than most other users of this drug. I am unable to indicate the impairment which made me susceptible to psychosis, but this does not mean that such an impairment does not exist.
You also rhetorically ask “If I feel disabled, am I?” First of all, I have not been talking about people who merely “feel disabled”. In my own case, I have experienced serious social difficulties since my childhood, a psychotic episode and ostracism at work. I find it difficult to “fit in”, I have often been rejected by others, I am very socially isolated.
If I say that I can describe myself as disabled, it’s not because I want others to feel sorry for me or because I feel inferior to others, or because I think that I can benefit in some way from describing myself as disabled. It’s because I know how different my life and problems have been from the lives and problems of most other people.
People who have never experienced similar problems with social functioning often struggle to understand them. For most of my life I kept being blamed for my problems by people who claimed that there was something wrong with me, that I should “change” (most of them never explained what they meant).
The idea that disability is real only if it has an undeniable physical cause is highly questionable. My mother has a friend whose adult son is severely autistic, unable to talk and to live on his own. There is no proof that his situation is caused by a physical impairment, but it would be ridiculous to say that he does not have any disability.
Telling someone “no, you are not disabled” can be a form of gaslighting, of telling him or her “your problems are imaginary, stop feeling sorry for yourself”.
I will end with this example from my own life: for some reason I was unable to learn many things at physical education lessons, or I was doing them much worse than others. Unfortunately there was no name for my problems. The teachers assumed that I was simply not trying hard enough… My problems were very real, though I did not have any visible physical disability.
Daiphanous Weeping, thank you so much for your comment and for sharing your sister’s story. I am so sorry to hear that she is no longer alive.
Yes, I fully agree with you that far too many people reject others’ harmless differences. This has certainly been my experience. I find it very sad that some people assume that if someone is rejected by others or if someone has no friends, it means that there is something wrong with the person – not those who reject him or her or those who refuse to be friends with him/her.
When you say that your sister had only one partner, in her 40s, I can relate so much to this aspect of her experience. Again, so many people silently assume that everyone has had “romantic” relationships. People who find this area of life difficult for all kinds of reasons can feel painfully excluded or throw themselves into relationships with toxic people in order to prove to others and themselves that “there is nothing wrong with them”…
I have never been able to understand why so many enjoy mocking people they perceive as “weak”. It is such an excellent example of human cruelty! I can be very sarcastic, but only in order to teach a lesson to someone arrogant and obnoxious. They are the ones who deserve to be mocked in order to learn how their victims feel.
When you say that angels work through their ambassadors – the rejectable – and not through arrogant and cruel, but “successful” people, I feel that you are expressing a very deep truth. Thanks to my experiences my instinct is always to empathize. I feel sorry even for the bullies who hurt others because of the emptiness in their souls.
My experience of psychosis has further increased my compassion for others and my hatred of cruelty (including, of course, emotional and verbal cruelty). Once again, thank you for your very kind and deeply moving words!
Christine, I could not agree with you more. As you say, unfortunately many believe that only problems which have genetic or biological causes are real. There is a widespread belief that some people are just “making excuses for themselves”, “feeling sorry for themselves” or even being simply too lazy to work.
I fully agree with you – people with serious psychological problems deserve support independently of the causes of these problems. I can’t say that the problems I have been having since my childhood have a biological cause, but I know that they are very real problems.
There are many types of disabilities and we have to remember that disabilities don’t have to be caused by a physical impairment.
Jesse, thank you so much for your very kind and thoughtful reply to my comment. Yes, it is very nice to virtually “meet” in this way and the Mad in America website is definitely one of the friendliest online spaces I know!
I agree with you that no one should have the power to say that someone else is “disabled”. In general, no one should believe that they have the right to label another person in some way.
You say, “It seems to some that, if one *feels* disabled, then they are.” I don’t personally think that people with various problems are quick to label themselves as “disabled”. I would rather say that many people are quick to embrace various psychiatric labels and often seem to find them somehow reassuring.
Jesse, you say: “What if you and I could get the help and support we need without having to be referred to as disabled?” Yes, of course people should be able to get the help and support they need without having to refer to themselves as “disabled”. However, I don’t feel that I am forced to accept the label “disabled” in order to have a chance to get financial assistance etc. in my country.
Let me explain my attitude more clearly. I am genuinely forced to use the “schizophrenia” label in order to try to get a disability payment, though I reject this label. But I have no problem with the term “disabled”. I don’t find it negative, painful or stigmatizing, unlike the “schizophrenia” label.
I think that labels like “mentally ill” or “schizophrenic” are far more stigmatizing than “disabled”. As we both know, many people fear the “mentally ill” and find them repulsive, believe that they should be forcibly treated etc.
You say that the label “disabled” can “lead many people down the very dangerous road of taking dangerous psychiatric drugs”. However, people start taking or being forced to take these dangerous psychiatric drugs when they get a psychiatric label – not when they are labelled as “disabled”.
No psychiatrist has ever told me: “you are disabled”. And if a psychiatrist had used this label, it would have made me feel much better than the labels “schizophrenia” and “mental illness”.
Of course in a sense everyone can say: “there are things I can’t do or don’t have, there are things I can’t achieve” etc. But I am not talking simply about individual limitations and frustrations…
As I have been trying to explain, I know that my development has been strikingly different from the one of most people. Even today I find it difficult to talk about it because I know that most people take certain things for granted…
To take just a few examples, for long periods in my life I was used to not having any friends, not even one. I have never assumed that I would find a partner as an adult. I did not have boyfriends.
I found my only real relationship only in my late 30s, after some very painful experiences. Some men clearly assumed that I was desperate or that there was something wrong with me – in fact, in some cases I was ready to give plenty of love and attention while expecting very little from the other person.
As I said earlier, I was extremely isolated in my workplace. I am used to being rejected by other people for reasons I don’t really understand.
I look at my life and I see how different it is from the life of most other women my age (I am now 41). I have only one friend and I feel very lucky because we will probably never stop talking to each other. I can openly talk to him literally about everything.
I can’t openly talk to most people about my life because there are things I have to hide (like my psychotic episode) and because I don’t want to be pitied. I don’t want anyone to pity me because I don’t have a partner or a successful career.
I am not saying that it all somehow makes me “disabled” in an objective sense. But I know what kind of difficulties I have encountered and I know how hard I have had to struggle to experience even very basic things (the first romantic kiss etc.).
I know that I could think of myself as “autistic” (I do have some traits associated with autism), but this label does not really describe me. In fact, there are many autistic people who have never had such social difficulties.
I once said in an online group for autistic women that I am wondering how they have been able to find their partners (the vast majority of them had male or female partners). No one responded and I guess that others were surprised by my question and did not know what to say…
Let me make it clear that I don’t feel unhappy because of not having a partner – I am simply sometimes wondering why (as it seems) plenty of people did not find it difficult to find a partner or to make friends.
You may have experienced similar (or different, but no less serious) difficulties yourself. I hope that even if your experiences were much more more painful than mine, you have also been able to fully accept yourself and your life.
I do sometimes feel very bitter, especially when I think about people who did not really appreciate me, though I was truly doing my best (and maybe simply trying “too hard”!). But I accept these feelings of bitterness and I am glad that I no longer talk to these people…
Jesse, all these things you say about me are so kind and heart-warming. If more people were like you, this world would be a much better place for everyone, not only those who feel “different”! Some people seem so cold and self-centered, but they somehow tend to think that they are “more normal” than those who find it easy to show warmth to others… This speaks volumes about the world we live in!
Yes, I will keep doing my best, and I would add that my experiences have made me stronger, more resilient and happier! Yes, I am much happier now than I was in my 20s… I worry much less about what other people think about me and it is very liberating.
Jesse James, I don’t think that anyone here is saying that people who are suffering should label themselves as “disabled” or “dysfunctional”. But “disability” can be defined in various ways. It does not have to mean anything negative, it does not mean that the “disabled” person is inferior to other people.
In my own case, I certainly don’t feel that there is something wrong with my brain. But I know that since my childhood I have had difficulties which most people don’t experience. For some reason many people did not accept me, even when I was trying hard to “be like others” (actually I was sometimes very painfully rejected when I was trying hard to “fit in”).
I feel that lots of people somehow sense that there is something “different” about me and don’t like it. I feel deeply grateful whenever I feel truly accepted by a person. I had a psychotic episode when I felt rejected by someone I saw as my only friend.
Because of my social difficulties I am very isolated and I have not had many experiences which most people take for granted. In today’s world social skills have become extremely important; life can be very hard for those who are perceived as “weird”.
I know that my being very isolated in my workplace was the main reason why I lost my job. If a colleague talked to me, I felt grateful. I am now unable to earn a living, though I am a highly educated person and an excellent translator.
To me, “disabled” does not mean that I see myself as inferior to other people. I simply see that there are things I can’t do or don’t have because I am different, because my development has been different. Even though I have gained in confidence in recent years, there are things I simply can’t achieve – things which seem natural to most people.
2 years ago I joined my country’s association for psychological and social approaches to psychosis because I was hoping that I would be valued there as a sociologist with personal experience of psychosis. Sadly, I was very disappointed – no one was interested in me, my knowledge and my experiences. I was probably dismissed as a “patient” with nothing important to say, though I don’t see myself as mentally ill and don’t take psychiatric drugs…
This is how many “professionals” treat people with experience of psychosis – they often seem to think that these people have nothing important to say (a psychiatrist kept interrupting me whenever I tried to say something). Yes, people with experience of psychosis are often dismissed or even ignored by “professionals”. Or they are patronized…
I believe that I have the right to financial assistance or to supported employment. I am a person who has accumulated many experiences of being rejected since her childhood, I am a person who is very isolated. I don’t find the term “disabled” offensive in any sense.
I know that I will probably always be poor and I don’t have a problem with it. I simply want to feel safe, to know that I will never risk being hungry or homeless. I think that plenty of people don’t even realize what it means to be a poor, socially isolated person with experience of psychosis who does not get any kind of disability payment… (And I am one of the lucky ones because I have a few loving family members and because I feel quite happy despite my situation).
Boans, it is thought-provoking that you felt “like you had woken as a black man” when you became a psychiatric “outpatient”. You say that “all that pent up hatred by police for blacks” was “vented on the white man who has had their right to complain taken from them via a label applied by a community nurse”.
It seems that in America and many other countries white people tend to take it for granted that they have rights of which Black people are routinely deprived. It is striking that many white people feel that they have realized what oppression means only when they become psychiatric patients… However, there are also other kinds of oppression which affect people of all skin colours, including poverty, domestic violence and childhood abuse.
Thank you so much for your very moving, insightful and courageous article! You have bravely confronted your own family’s history, which must have been very difficult and painful.
It is quite shocking that some publishers and literary agents believe that there is “no market for books about Africa and Africans”. The history of colonial Rhodesia, including the racist segregation in this colony, is much too little known and often seems forgotten. I have just ordered your memoir and I am looking forward to reading it.
Bill, yes, of course I have considered it. I have been working as a translator and I have even translated two books since losing my job.
However, this profession is extremely competitive and very badly paid, so I have been unable to earn a living in this way. One’s social capital (whether or not one has friends in publishing houses etc.) plays a huge role.
And most of the translators who are much more successful than me work extremely hard, which is definitely not good for their health. This workaholic lifestyle is seen as normal in the profession.
As I explained in one of my comments, in order to become e.g. a psychotherapist I would first have to pay for a very expensive course. I don’t currently see any other opportunities for self-employment in my case. My love of writing, reading, research and foreign languages is sadly not enough to earn a living!
Let me add that I am quite an introverted and contemplative person, which makes things even more complicated…
Chuck writes in his article: “In addition, the disability system can create a strong social and financial dependency that can conflict with the goal of recovery. So, those who use the system can pay a very high price.”
This is how many people think – that disability payments create dependency. What these people don’t realize is that it can be very difficult to stand on one’s own feet, especially if one comes from a poor background.
It is easy to say that disability payments create dependency if one is a psychologist in private practice. I wanted to become a psychotherapist, but I can’t afford to pay for a psychotherapy course. They are simply much too expensive.
If a person does not have any income and can’t find or keep a job, the situation is very dangerous to this person’s health, both mental and physical. It is much worse than getting a disability payment. Being afraid of hunger and homelessness can never be good for people. I have experienced unemployment and I know how an unemployed person feels.
I think that the author also forgets that poverty deepens people’s social isolation. As an example, I can’t afford to go to restaurants with other people. I go to a hairdresser as rarely as possible. I don’t buy new clothes. I can’t travel to another city or country whenever I feel like it. I can’t openly tell people that I am simply too poor to do things they take for granted.
Ron, you make an excellent point: “…if we lived in a society where everyone got their basic needs met whether or not they worked jobs etc., then we wouldnât need to be trying to figure out who is disabled and who isnât.”
You mention people who “are in a mental state that is stopping them from being employable”. There is nothing wrong with my mental state, but I don’t fit in. I have always been an outsider and a loner, since my childhood.
I had very serious social difficulties for most of my life. There were periods in my life where I had literally no friends – not even one person. I have gained in confidence in recent years, but there is now a gulf between me and most people, a gulf I can’t overcome (in terms of social capital etc.).
I don’t know if I am “employable”. And the very term “employable” is highly problematic. Of course, in every society there are some hard and extremely stressful jobs which few people are ready to do, but if a person accepts such a job only out of necessity, is it a good thing? If the job mentally and/or physically destroys the person, will it be a good thing? And would it be fair to expect a highly educated person to work at a job largely below their education level only because the person is unable to find any other job?
Many thanks for your comments, Tina. You say that some of us “do need and want supports, services, and reasonable accommodations in relation to the distress/unusual perceptions we experience whether once or many times or all the time.” I agree with you and I would add that some of us need and want supports etc. because they find it very hard to function in a capitalist society, even if they no longer experience distress or unusual perceptions.
Like you, I have been “locked up”. But even though most people don’t know about it and don’t discriminate against me for this reason, I sometimes feel painfully different from others and I have felt that way since my childhood. I have embraced my difference, but it creates very real problems in my life.
In the case of psychiatric survivors or neurodivergent people one of the “enabling accommodations” could be simply financial assistance. It can be very difficult to find and keep a job if one is e.g. prone to psychosis.
I personally have had social difficulties since my childhood. I have simply not had the same type of development as most people. I find it difficult to make friends; I have had very little experience with relationships; I tend to feel like an outsider in groups.
I have had only one steady job, despite a very high level of education. I don’t have a competitive mindset, I am not good at promoting myself. I have never wanted a career, I enjoy a peaceful life and feeling free.
I am not a lazy person, but I have not been able to find a job where I would be able to use my knowledge, talents and skills. I am now trying to gain teaching qualifications, but I don’t know if I will be able to work as a teacher (I am afraid of being rejected by other people, of being mocked behind my back etc.).
I don’t identify with any psychiatric label (though I have experienced psychosis), but I think that some people find it really hard to survive in a capitalist world – and that I am one of them. I don’t know if I would be currently able to find a job (ANY job) in my country (I did try to find a job in the past – unsuccessfully). I have been able to pay for my teaching course only thanks to my mum’s help.
I was getting a disability payment because of “schizophrenia” for a year – it is a ridiculously small sum in my country, but at least I had an income and I had some rights as a disabled person (reduced price bus tickets etc.). I was never ashamed of using my disabled person ID card.
I am trying to get a disability payment again and I do see myself as disabled. Not because I see myself as mentally ill/disordered (I don’t), but because I am simply unable to earn a living, and because I know that it is linked to all the things which make me different from most people.
Daiphanous Weeping, I am very happy to hear that you like my writing! As to the term “schizophrenia”, I understand why you find it useful. I think that there are no “good words” and “bad words” when people are talking about their own experiences.
Steve, yes, I have also read that smoking lowers the level of neuroleptics in the blood. I am sure that this could partially explain why so many patients in mental hospitals and so many people labelled with “schizophrenia” are heavy smokers.
I agree with you that the psychiatric industry does not take it into account – as you said, it is generally trying to blame the shortened lifespans on people’s “lifestyle”.
At the same time, I don’t think that we can safely conclude that many people diagnosed with severe mental illness smoke because of neuroleptics. Poor people are more likely to smoke. Smoking is one of the few pleasures available to the poor, and it is also more difficult to get help in quitting smoking when one is poor.
In one of my comments I mentioned a man who was diagnosed with “schizophrenia” and a heavy smoker and who died from lung cancer. One of the sisters of this man – who did not have any psychiatric diagnosis – was a heavy smoker, too, and also died from lung cancer.
The thing they both had in common was poverty and maybe also childhood trauma (they lost their parents at quite a young age).
If we say that neuroleptics cause people labelled with severe mental illness to smoke, this will be too simplistic. Neuroleptics definitely play a role here, but there also other factors, including poverty and stress. There are people on neuroleptics who never start smoking.
Of course various lifestyle factors shortening the lives of people labelled with severe mental illness are closely linked to their situation. People who are poor and stigmatized are much more likely to do things which harm their health, including drinking, being physically inactive, eating junk food etc.
Rebel, as to the “Torrey Argument”, I feel that you have misunderstood me. I did not say that the lives of patients diagnosed with schizophrenia are shortened only or mainly because of smoking.
I am not defending psychiatric drugs. I was forced to take neuroleptics in the past (in a hospital). I refuse to take any psychiatric drugs, I know that they are harmful.
However, it is not true that the lives of patients diagnosed with schizophrenia are shortened only because of neuroleptics. There are many other negative factors in the lives of most of these patients, including poverty and social isolation. Many of them are smokers and some of them die because of lung cancer which is usually caused by tobacco smoke.
A relative of my mother’s husband was diagnosed with schizophrenia, but he was also a heavy smoker. He died from lung cancer. He kept smoking even when he had terminal lung cancer. We can’t say that his illness and death was caused by neuroleptics.
Let us not forget either that many patients diagnosed with schizophrenia don’t take neuroleptics or take them only occasionally. Many psychiatrists are complaining about it in their books and articles!
The shortened life expectancy of psychiatric patients does not have a single cause. We can’t blame everything on psychiatric drugs and say that all the other negative factors are of no importance.
Rebel, I also think that there is something wrong about this discussion, though for different reasons. The idea that psychiatric patients now have it worse than in Nazi times – or at least just as bad as in Nazi times – is based on emotions, not on facts, and disrespectful to the victims of the Nazi extermination of psychiatric patients.
As I have said many times here, the Nazi extermination of psychiatric patients was planned. There are facts and documents which prove that these patients were murdered. We are not talking here about conjectures, or about lives which were shortened because of the long-term effects of toxic drugs, or about people who took their own life while using a psychiatric drug. We are talking about people who were literally murdered.
Most people know very little about the Nazi extermination of psychiatric patients. They were not murdered in death camps or in concentration camps. Most of them were actually murdered in asylums. Psychiatrists and psychiatric nurses were actively participating in these crimes.
There is absolutely no evidence that today’s psychiatrists want to kill their patients. Psychiatric drugs have many harmful effects, but they are not prescribed in order to kill or to harm the patient. They are prescribed because of the dogmas of biopsychiatry, because of the power of Big Pharma, because it is much easier to give a person psychiatric drugs than to provide free psychotherapy and to improve the person’s life, and finally because society is simply scared of the “mentally ill” because of the prevailing stereotypes.
As I have said in this thread, many patients want to take psychiatric drugs. This is very important – in very many cases these drugs, especially antidepressants, are NOT forced on unwilling people. We can say that most people don’t know enough about the long-term effects of psychiatric drugs, but we can’t say that people who are willingly taking psychiatric drugs are passive victims tortured by evil psychiatrists.
As I said earlier, some of the people who are using psychiatric drugs actually get angry if someone is criticizing these drugs. Of course we can say that they are brainwashed, but we can’t deny the fact that many people want to be prescribed their favourite psychiatric drugs and believe that the drugs are helping them.
Someone Else, you mention a doctor who – as you believe – wanted to murder you. But you also say that this doctor wanted to cover up her husband’s malpractice. We can’t compare it with planned extermination of hundreds of thousands of people.
Someone Else, only some people experience psychosis on psychiatric drugs. Importantly, there are also other drugs which may trigger psychotic symptoms in some people. My psychotic episode actually began when I was using an anti-malaria drug.
Psychiatric drugs definitely have many harmful effects – I am not defending these drugs. But doctors don’t prescribe them in order to kill their patients. In Nazi Germany psychiatrists were literally sending patients to gas chambers.
Let’s not forget that only some psychiatric patients are forcibly treated with psychiatric drugs. Countless other patients take them willingly. Some people even get angry if someone says something critical about the psychiatric drugs they are using!
Psychiatrists are often much too dismissive about the negative effects of psychiatric drugs, but it is not the same as exterminating people. Today’s psychiatrists don’t intend to kill their patients – in fact, a patient who is alive for many decades and dutifully taking his/her medication(s) is much more useful to psychiatrists and to Big Pharma than a patient who is dead!
Prescribing drugs with harmful effects is not the same as intentionally killing people. There is a crucial difference between a psychiatrist who is convinced that his/her patient needs a psychiatric drug and a psychiatrist who thinks that his/her patient should be killed in order to reduce public expenditure.
Psychiatric patients diagnosed with schizophrenia tend to have shorter lives than the rest of the population, but neuroleptics are not the only cause. As an example, some of these patients die from lung cancer caused by smoking (unfortunately, for some reason patients diagnosed with severe mental illness are very often heavy smokers).
Bippyone, I definitely agree with you. I experienced psychosis, though I was not using any psychiatric drugs before the psychotic episode. I have recovered, and I am sure I was able to recover because I refused to be a long-term patient. I also agree with you that what we need are sanctuaries without force!
Daiphanous Weeping, there are many people who have experienced psychosis, but who don’t believe that they have schizophrenia. Psychosis does not have to be lifelong.
I have personally experienced a genuine psychosis (I had “voices” and delusions), but I don’t believe that I have schizophrenia. In fact, I have never had a so-called relapse despite not being on neuroleptics.
This article is not implying that psychosis is merely “unhappiness from lifeâs ordeals”.
Dear Fiachra, thank you for your reply. I want to make it clear that I know very well what akathisia is – I suffered from horrible akathisia myself when I was on neuroleptics.
I was not frightened or distressed by your comment. I simply think that we can’t compare planned extermination to being prescribed a drug associated with suicidal thoughts and attempts in some people.
I don’t think that psychiatrists who prescribe akathisia-inducing drugs want their patients to take their own lives. In fact, plenty of patients are prescribed akathisia-inducing drugs, but only some of them attempt suicide or die by suicide.
To me, akathisia was horrible, but it was definitely not the worst thing in my case. The worst thing was the feeling of hopelessness caused by my “schizophrenia” diagnosis. If I had attempted suicide while on neuroleptics, a researcher might have wrongly concluded that the drug-induced akathisia was the cause of my suicide attempt.
You say that “about 4 out of 10 of the people on these drugs will attempt suicide.” I don’t know where this number comes from (it does not come from the “Depot Antipsychotic Drugs Revisited” paper).
This number seems much too high. Anyway, the fact that a person attempts suicide while using an akathisia-inducing drug does not prove that the akathisia is the *only* cause of such a suicide attempt, or that akathisia is *always* or *usually* linked with suicidal thoughts and suicide attempts.
Dear Fiachra, I know that you feel that Fluphenazine caused your suicide attempts. I also understand why you describe your psychiatrists as psychopathic.
However, Nazi psychiatrists aimed to literally exterminate psychiatric patients. Nazi psychiatrists saw the lives of these patients as worthless, “unworthy of life”.
These people were murdered in cold blood, on a mass scale, just like Jews. This was a planned and well-organized extermination programme. Psychiatrists and psychiatric nurses were actually personally participating in this much too little known programme.
Psychiatrists who prescribe Fluphenazine are not doing it in order to exterminate their patients. Only some people take their own life while using Fluphenazine. And it is impossible to say that Fluphenazine is the cause of such suicides. There are no data which would allow us to make this claim.
Even if it were possible to prove that Fluphenazine (or another psychiatric drug) is the only cause of some suicides, it would be impossible to compare it to the planned extermination of psychiatric patients by the Nazis.
You say that you believe that “the Fluphenazine killings would also have been well in excess of 137,500 Deaths.”
First of all, suicides associated with Fluphenazine use can’t be called killings. There is a proven link between alcohol use and suicide, but somehow no one calls suicides associated with alcohol use “alcohol killings”.
Secondly, we simply can’t compare planned extermination with suicides associated with the use of a psychiatric drug. Suicide is always a person’s decision. It is not the same as being murdered in cold blood.
If we put on the same level the suicides of people who were taking psychiatric drugs and the deaths of people murdered by the Nazis, we will disrespect the memory of the victims of the Nazi extermination programme.
The Nazis murdered between 100â000â137â500 of patients diagnosed with schizophrenia between 1934 and 1945, as estimated in this article http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2800142/. Many of these people were murdered in gas chambers. The number of the victims must be much higher than the authors believe if we take into account all the countries and territories under the Nazi occupation.
The article “Suicide associated with akathisia and depot fluphenazine treatment” does not say how many suicides may be associated to fluphenazine treatment. And even if we had such statistics, I certainly don’t think that we should compare deaths by suicide associated with fluphenazine to the deaths of psychiatric patients exterminated by the Nazis. The latter had absolutely no way of escaping their horrible death.
This is a deeply moving story to which I can definitely relate, though I have not experienced such unimaginable horrors as the forced electroconvulsive “treatment” described by the author.
I, too, felt very isolated as a child and rejected by my peers who sometimes overtly bullied me. In later years I have accumulated many similar experiences, including in my student years and in my former workplace – in some periods of my life I was actually surprised when someone showed me friendliness. Only in recent years I have gradually come to terms with the fact that many people reject(ed) me only because I am/was not like them.
I used to struggle (and still sometimes struggle) with deep and painful insecurities, certainly largely caused by my experiences of social rejection. During my only psychotic episode, almost 10 years ago, I heard voices telling me, among others, that no one wanted me, that I was ugly, that my teeth looked horrible and that no man would ever kiss me for this reason, that I was boring and spent my days reading the newspaper.
My psychotic episode was triggered by an emotionally painful (maybe even traumatic) experience, but I am sure that many of the things the voices were saying reflected the pain and fear I often felt since my childhood because of all the accumulated experiences of being isolated, rejected and bullied. The fear of mocking and cruel things someone might say to me or behind my back; of others’ jeering laughter and demeaning labels and nicknames.
I have greatly gained in confidence in recent years, but fear still sometimes overwhelms me when I think that someone or even a group of people might start cruelly deriding me, e.g. because of an unpopular opinion on some issue.
I am sure that many people’s cruelty to those who are “different”, those who are stigmatized and those who are seen as losers or failures is one of the main causes of emotional distress and “mental illness”, including psychosis.
I am very sorry to hear that this doctor/clinic will not take your welfare benefit card. I think that there must be some specialists who accept patients like you, but I don’t know enough about the US healthcare system to give you any useful advice. Maybe someone else will…
I understand what you mean when you say that it is difficult for you to get advice from strangers. But let me just say this: maybe you would be able to find a job where no one would ever yell at you.
Some people actually do prefer worse paid jobs to well-paid, but more stressful ones. Academic jobs are among the most stressful jobs and some people choose to leave academia.
I know that social security disability is not guaranteed, but I think that there would be no harm in applying for it…
You are very welcome, Gina. I am touched by your reply to my comment and very glad that you found my words kind and encouraging. I am also very happy to hear that you keep “fighting and surviving and plotting”, as you said!
Gina, you really don’t have to explain to employers why you no longer work at the college. You can simply say that you wanted to do something else, that the college job was too stressful or unsatisfying.
It is not easy to get a publishing contract for a memoir. And even if you do get it, you have to find some way of surviving before you get it.
If I were you, I would also apply for Social Security because of arthritis etc. – you have the right to Social Security, you don’t have to work.
Gina, thank you once again for your reply to my comment. I am happy that you appreciated it!
Yes, fortunately I have been able to heal to a very large extent. But I find it sad that there are experiences (including my stay in a mental hospital) I feel forced to hide, though I have not done anything wrong.
However, a bigger problem is my economic situation. Without my mum’s financial help my life would have been very stressful because of the very limited job opportunities for women like me, women who don’t fit in and don’t want to fit in the capitalist world of ruthless competitiveness, unquestioning workaholism, constant self-marketing etc.
But I actually feel quite happy – my happiness comes from the inside and from my connections with people I trust (there are not many of them…).
I can tell you that the experience of being labelled as “mentally ill” does not rule out happiness, though in order to feel happy one often has to reject many mainstream beliefs, including the idea that one must have a successful career and plenty of friends to be happy.
Gina, I saw your reply to my comment in my emails, but I don’t see it here. You are very welcome!
You are so right in saying that your depression is caused by real blows to your life. People can be extremely distressed because of traumatic experiences, poverty, isolation etc. Mainstream psychiatry tends to overlook these very real causes of people’s emotional distress.
Gina, please don’t leave this website. It is a safe and friendly space, no one is allowed to bully anyone here.
I experienced “psychiatric incarceration” in 2012, for more than a month. Like you, I used to work as an academic and I have experienced unemployment. I have not had a steady job since 2018 (when I lost my university job). Like you, I don’t have children. I feel that my society is callously indifferent to the situation of people who “don’t fit in” for some reason.
I really hope that you will soon feel better. Please stay with us and feel free to write here.
@dmschlom, I am not in the least surprised by what you say about the “unspoken rule”. I think that it is corporate welfare as you say, though maybe it is also widely assumed that people who are prescribed neuroleptics are much more disabled enough” than those who are prescribed e.g. only antidepressants.
I am not surprised either by the fact that gay men with HIV get so little money compared to the costs of HIV drugs. As you said (also in your earlier comment), the establishment serves the interests of corporations. The level of hypocrisy can be staggering (corporate feminism which portrays itself as the only feminism is a great example).
A really fascinating and illuminating interview! Dr. Hansen has co-authored a very interesting article which shows that psychiatric diagnoses have become a survival strategy for many poor people because of the changes in the US welfare system introduced by the 1996 Personal Responsibility and Work Opportunity Act: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3920192/ One can observe the same phenomenon in many other countries.
Ruby, I can relate so much to your experience. Thank you for describing everything in such a beautiful, touching and thought-provoking way! (I was not at all surprised when I read that you are now in a creative writing program). And you are so right about evil: evil can so often mask as good. I guess that most psychiatrists are genuinely convinced that they are helping their patients, that the patients have biologically-based diseases and that patients who are “uncompliant” simply don’t know what is good for them.
I was put on Abilify in 2012, after a psychotic episode. I have experienced the emotional blunting you mention, as well as many other side effects, and I felt that my life had become sad and almost meaningless. I sometimes even felt suicidal, though it had never happened to me before. I often felt that my life, my real life, had ended, and that I was no longer myself.
Psychiatrists did not even want to reduce my dose – I was getting the standard one, though I am less than 5’2 tall. But just like you I felt that I did not want to “accept the terrible fate others had already accepted for me” – to spend years and maybe even the rest of my life without feeling truly alive, without even being able to have real conversations with my family members (Abilify caused a horrifying emptiness in my mind, as if I had literally nothing to say to others).
Fortunately I was able to come off Abilify after spending more than a month on it. I have never told psychiatrists about it and simply stopped registering for psychiatric appointments. I have never had another psychosis. After losing my job in 2018 and a period of unemployment I felt forced to get involved again with the psychiatric system in order to be able to apply for a disability pension.
I feel uneasy because of this involvement with the system, but I feel that I have no other choice. I am not taking the prescribed neuroleptics, but I can’t be open about it. Anyway, I was receiving the disability pension only for a year and I have now been fighting for many months to get it again (my case is now in a court). But even though I am poor and forced to rely on my mum’s financial help and on my various small freelance jobs, I am very happy and I feel free.
I do think that it may be like Stockholm Syndrome in many cases. However, I also think that there are people who decide to become “peer supporters” etc. because they don’t have any better job opportunities. For many people (e.g. those who are open about their psychiatric diagnosis) this may even be the only job opportunity.
In my country (Poland) these posts seem to be coveted and there are very few of them. People with lived experience can’t simply apply for one of these posts: from what I have read, psychiatrists may offer this job opportunity to some patients – well, of course they are not going to choose rebellious patients.
In my own case, I am painfully aware that this would currently be the only chance of getting a steady job which would not be very stressful and exhausting (job opportunities for women are very limited in my country). It would be much easier to work as a peer supporter than e.g. as an overworked carer in a care home. But of course I would never want to work for the psychiatric system, obey psychiatrists, ask people if they are taking their “meds” etc. Anyway, as a rebellious patient I have never even been offered such an opportunity!
Well, I had very mixed feelings while reading this account. I had a psychotic episode in 2012 and spent more than a month on a locked ward, at a public hospital. I was not even able to go outside for more than a month. It was obvious to me that most of the people on my ward were poor. Many patients were stealing from others and even very basic things like sanitary pads were stolen from me: this shows how desperate many of the patients were at my hospital.
Most psychiatric survivors in my country are poor. They are happy if they are getting a small disability pension. I am very educated, with a PhD like the author of this account, but I am now poor myself.
The author claims that she “deserves” expensive cosmetics and keeps mentioning them with relish in her account. Does she actually think that there are women who don’t “deserve” expensive cosmetics and other expensive stuff? Oh, I can understand that it can be upsetting to lose an expensive serum or face mask if one is used to such luxuries, but there are so many people – including psychiatric survivors – who lack basic things. The author also mentions the walks she was able to take, the wine she was able to drink at the hospital etc.
I feel that the author does not even realize what it means to be on a locked ward at a public hospital and how traumatizing these stays can be for many people who are treated literally like prisoners and forcibly drugged (and sometimes even put in restraints). I feel that the author is completely and shockingly unaware of her own privileged situation. She assumes that she simply “deserves” everything she has because she feels that she has been working hard – but there are so many people on this earth who work very hard for very little money and can’t satisfy even their basic needs.
Do all these people “deserve” to be poor and oppressed all their life? Do most human beings and most psychiatric survivors in this world “deserve” to live in poverty? And people locked in psychiatric hospitals experience much worse things than what the author has described.
kindredspirit, what you say is quite interesting. I have actually sometimes thought that some mild hearing loss might have contributed to my episode of “voice hearing” in 2012.
I may be indeed speaking a bit louder than many other people, and undiagnosed mild hearing loss may be one of the explanations. Interestingly, however, the situations where people claimed that I was “speaking too loud” or even asked me to lower my voice have been infrequent – and these people usually had power over me.
This was actually the most frequent during my stay at the psychiatric hospital and was humiliating – I was fully aware that some of the staff told me to lower my voice and expected me to obey because I was a psychiatric patient on a locked ward.
The first time I have ever been asked to lower my voice was when I was a schoolgirl, and the person who asked me to lower my voice was a male teacher. I don’t really think that I had hearing loss already at that time, and it is striking that no female teacher ever told me that I should speak less loudly.
I actually think that in some cultures many people are not used to women who speak in a confident way. Interestingly, outside my own country I have been rebuked for “speaking too loud” only by two much older white women from the UK.
My parents have never expected me to be a “sweet”, quiet, self-effacing girl, and I guess that this is why my way of speaking irritates some people. And many people with power – like the psychiatric staff or the male teacher – simply enjoy using their power to make others feel small.
Feral@50, thank you for your reply, I really appreciate it. I guess that there are many people who indeed assume that only people who are dangerous to others can be involuntarily committed.
I find this belief particularly hurtful. Of course there are people who behave in a very inappropriate and even aggressive way on locked wards, but other involuntarily committed people also suffer because of their behaviour. In my own case I did not become violent even when some other patients behaved in an aggressive and abusive way towards me, so the idea that people who have experienced psychosis are dangerous always makes me very sad.
As long as many people believe that psychosis makes people aggressive and violent, it will be very difficult to fight e.g. against forcible drugging.
In my country (Poland), there are psych wards which aren’t locked. I wished I had been admitted to one of these wards when I was psychotic, but unfortunately I did not have a choice in the matter.
Feral@50, I agree with almost everything you are saying. However, you seem to be implying that people who are involuntarily committed are dangerous and “presenting with aggression toward others”. I want to make it very clear that people may be involuntarily committed simply because they are psychotic and deemed as a risk to themselves. This has happened to me – I have never been aggressive towards anyone.
I actually asked a nurse why they wanted to put me on a locked ward if I am not aggressive, and he replied: “Oh, as an example you are speaking too loud.” Let me explain that I was not even angry – some people simply claim for some reason that I am speaking too loud. And I don’t think that this nurse really thought that I was being “aggressive” – he and others simply thought that a severely psychotic person should be on a locked ward.
I do agree with you that even toxic people can provide some social/emotional/financial etc. support. People are complex and even toxic people can do good things (sometimes unintentionally).
If someone is able not to tell others that they have come off psych drugs, the situation is not so bad. I assumed that you meant a much worse situation: a situation where someone is literally checking if a person “has taken their meds”. Or giving the person “their meds”.
When someone’s family members are able to control a person’s life to such an extent, I don’t think that it can be good for anyone, even if they also provide some support. Being treated like a child is incredibly toxic. And if we assume that we can’t find any other source of emotional/social support than the person/people who control (s) us, we are being too pessimistic.
You mention “the abused homemaker who if they left would end up homeless, hungry, and cold”. But being systematically abused can be actually much worse than being homeless, hungry and cold. It is often destroying the abused person, both mentally and physically (even if the abuse is only emotional) – and some victims of domestic violence actually end up being killed by their abusers or dying because of their injuries.
Of course a woman who has an abusive partner may assume that her situation “is not so bad”. After all, she has a roof over her head and maybe her partner has a good income; and the partner is not abusing her all the time. But abuse has an impact on the way of thinking of abused people – many of them come to see completely abnormal situations as normal.
People controlled and abused by their partners are never advised to simply endure the abusive situation. There is always a way out, as long as the victim is able to leave the abuser’s house or make a phone call. Being homeless is scary, but it is not as horrible as being controlled by someone until one’s death or the other person’s death. Even some children and teenagers choose to run away from home.
If an adult person diagnosed with a mental illness thinks that their parents or partner have the right to check if they are taking “their meds” – to treat them like a naughty child until the end of their life and to literally force them to take toxic drugs which can cause irreversible damage – this means that the person sees an abusive situation as normal.
Unfortunately, many people assume that if they are “mentally ill”, they automatically have less rights than others. Many people assume, too, that as long as their controlling parent(s) or partner is being “nice” – not physically violent, not calling them horrible names etc. – the situation is “not so bad”. In reality, being controlled and being infantilized for many years or even decades, as well as being fed toxic drugs, is extremely damaging – both mentally and physically.
Willoweed, what you say is both thought-provoking and very sad. I am very sorry to hear that other people treated you so bad when you wanted to come off psychiatric drugs.
You say that revealing that one is trying to quit psych drugs “causes the opposite of social support” and all kinds of emotional violence. But when someone’s family members/friends are so toxic and cruel, can we actually say that the person does have some kind of social support as long as s/he stays on psych drugs?
When people look down on someone and control him/her, they don’t provide any genuine social support. I think that it is much healthier to lose such a “support network” than to remain under the power of very toxic, controlling and brainwashed people.
Dear Mwati, thank you so much for sharing your story, and particularly for mentioning your terrifying experience with this large man who opened the bathroom’s door, the very problematic lack of separation of the sexes in many psychiatric hospitals and the fact that both the rooms and the bathrooms were unlocked.
I live in Poland. In 2012 I was having mental health issues and I actually spent one night locked from the outside in a large room in a psychiatric hospital where I came to seek help. I was supposedly locked in this room “for observation purposes”. Two men were sleeping there. I was frightened and I did not sleep all night. Until today I simply can’t understand why the staff locked a woman in a room with two men!
Finally I was involuntarily committed to the same psychiatric hospital. Again, I was quite frightened when I saw that heavily medicated women were sleeping in unlocked rooms. Strangely, the women’s bathroom was also unlocked, whereas the doors of the cubicles in the men’s bathroom could be locked from the inside (for this reason I actually often used the men’s bathroom). All the showers were unlocked. Fortunately, after some days I realized that the men on my ward did not seem dangerous, so I was able to use the showers.
Just like you, I am unable to understand why the sexes are often not separated in mental hospitals. As you said, men can be actually dangerous to women on such wards or harass them. And it is very true that some of the men on locked wards do have a criminal background…
Janice Haaken is also talking about so-called Satanic ritual sexual abuse and implies that such abuse never happened. I am not saying that it did happen, but I am wondering why she does not explain why some women believe(d) that they had been abused in this way.
In Poland psychiatric survivors may be actually refused any form of financial assistance, even if they don’t have any other regular income. This is what happened to me this month. I was refused a disability pension despite my diagnosis of “schizophrenia” and even though I don’t have any regular income. I am now going to have to appeal to a court. There are, however, many people who may find it very difficult to appeal to a court in such a situation
Poland is one of the countries where being refused a disability pension may literally mean hunger and homelessness. The “social assistance” benefits for the poorest of the poor are extremely low here.
Caroline has an excellent point. First of all, the “mentally ill” are definitely seen as “die-able”. People diagnosed with “schizophrenia” die on average 20-25 years earlier than the general population. The extreme stigmatization of these people and the treatment with neuroleptics are among the causes of this problem.
Secondly, as Caroline has pointed out, Thomas Teo consistently uses the term “people with mental disabilities”. This is extremely problematic. The term “mental disability” is very often used to refer to cognitive/intellectual disability. Only some people diagnosed with serious mental illness have a cognitive/intellectual disability. Many of them are actually highly intelligent and educated.
Dr. Teo lumps together under the term “people with mental disabilities” people with diagnoses like “schizophrenia” and people with an intellectual/cognitive disability. Even when he talks about the Nazi T4 “euthanasia” program, he does not say that the Nazi regime deliberately set out to exterminate people diagnosed with “schizophrenia”. Psychiatric patients were actually the first victims of the Nazi gas chambers.
The German director Florian Henckel von Donnersmarck shows the fate of many psychiatric patients under the Nazi rule in his film “Never Look Away” (2018 – one can read the script of the film online). A young, highly intelligent, sensitive and creative woman is put in a psychiatric hospital after a mental breakdown. Some years later the Nazi doctors decide to first sterilize and later murder her, like many others.
When she finds out that she is going to be forcibly sterilized because of her diagnosis of “schizophrenia”, she says “I know I’m healthy”, but a doctor coldly replies: “Three experts are of a different view” – though we plainly see that there is absolutely nothing wrong with her; she is only much too honest and outspoken for the doctor’s liking.
She later dies in a gas chamber with a group of other women, including a woman with Down syndrome and a woman with a physical disability. It is crucial to emphasize that many German and Austrian psychiatrists were actively participating in this genocide.
Kindredspirit, thank you so much for your comment. I am still wondering how people from the Social Security Administration can find out about a person’s “failure to follow prescribed treatment” in the case of orally administered psychiatric drugs unless the patient informs them about it.
I am also wondering if the Social Security Administration expects neuroleptics to return a person diagnosed with “schizophrenia” to “substantial gainful activity”. After all, “schizophrenia” tends to be portrayed as a debilitating brain disease which impacts people’s cognitive functioning; and many psychiatrists claim in their books and articles that neuroleptics don’t help with the so-called negative symptoms of schizophrenia (this is yet another psychiatric construct!).
Evan, many thanks for your reply. I think that there is currently no way of controlling if a person really takes neuroleptics unless they get them in the form of neuroleptics. I actually remember reading an article by a US psychiatrist who wrote that patients could be rewarded with money for taking the drugs! If psychiatrists have such ideas, it means that it is actually very difficult to force people to be “compliant”, even if they are on a social security disability income.
I read yesterday that even if a psychiatrist knows that a patient is taking the medication “inconsistently”, they should simply mention it in the Adult Disability Report. As I said earlier, psychiatrists know very well that many people take these drugs “inconsistently” (if at all). “Non-compliance” is much more frequent than many assume.
I hope that I am again going to get a disability income myself this year. But I will never agree to take these “meds”, even in a very small dose. I know that I don’t need them. My only problem is that for various reasons (but not because of “mental illness”) I have been unable to find a decent, meaningful steady job in my country after losing my academic job.
Caroline, thanks a lot for your reply. You say that you are worried that you might lose the disability income if you don’t take any psychiatric drugs. Could these people find out that you are no longer taking these drugs? And is there actually a law saying that a disability income can be paid only to “compliant” patients?
If only “compliant” people with a diagnosis of “schizophrenia” can get a disability income in the US and if someone is somehow controlling their level of “compliance”, this is truly barbaric!
It is really great to know that you are now almost completely off neuroleptics. I also hope that you will be able to find a decent job, but I do hope that you will be able to completely come off psychiatric drugs even before you find a job.
Regarding marriage, I am happy to know that you now have such a relaxed attitude. What I should have emphasized more in my earlier comment is that the idea that everyone should have a partner is a product of social conditioning, though many people are not aware of it. There is no real reason to assume that people are the happiest if they are in a monogamous live-in relationship…
Caroline, I was getting a disability income last year because of a diagnosis of “schizophrenia”, but I was not using neuroleptics. Of course I could not be open about it with my psychiatrist. I am mentioning my experience because I think that people who get a disability income should be aware that they don’t have to take psychiatric drugs.
According to many studies many (if not most) people diagnosed with “schizophrenia” are not regularly using neuroleptics. Obviously it is seen as a huge problem by mainstream psychiatry, as “non-compliance” and a sign of “anosognosia” (lack of insight). Only some of these people talk/write openly about their experiences.
Many of us do need “survival money” (I am also in favour of a universal basic income) and many people find it difficult to “disobey” psychiatrists. But neuroleptics are so harmful that we should never feel guilty if we refuse to take them – even if it means that we can’t be open with psychiatrists.
I did have a job myself, I even worked as an academic lecturer for 10 years. I now work as a book translator, but I am unable to earn enough to survive.
I have not been able to find a new steady job – both because of my own personality (I am an introverted and bookish person) and because of the sheer scarcity of job offers for people with my type of education and professional experience in my country. Fortunately my mum is able to help me (my dad is no longer alive) – otherwise I would be in a very difficult situation.
I have never been in a typical relationship, but I have realized that I should not feel frustrated because of it – that the idea that everyone (and especially every woman) should keep trying to find a “perfect” partner who will adore them is based on a myth.
I know that I am capable of love, but I feel that it is difficult to find true requited love in our times – it seems that many people are actually afraid of real emotional closeness or cultivating a very idealized and unrealistic image of love.
Sam, he is definitely not safe to go to. I am going to choose a psychiatrist from the private sector next year. I don’t think that moving to another part of my country would change my situation – if I could, I would move to the UK where people with psychiatric diagnoses are treated much better than in Poland.
Here I have to fight even to get my (small) partial disability pension renewed – the system here is very callous. Fortunately I can count on my mum’s financial help (though she is not rich), so I consider myself very lucky. But I am sure that there are some Polish people who are in dire poverty and very distressed after being refused a disability pension despite a diagnosis of “schizophrenia”…
Hi Evan, yes, I am going to send you an e-mail. I just wanted to quickly comment on some of the issues you have addressed. Oh, I have only now noticed that I had inadvertently copied a paragraph from your earlier comment in my own comment – sorry for that! You will hear from me soon đ
Evan, let me also explain what I meant by my difficulties with reading and conversations on neuroleptics. I did not find it difficult to find the right words. As I said earlier, there was a horrible feeling of emptiness in my head, as if I had literally nothing to say. I felt as if all my imagination and creativity had been killed. I have never experienced this feeling when I was not on neuroleptics – and I became my old self again as soon as I started coming off my neuroleptic.
Regarding my difficulties with reading, again it was something very different from what you describe in your case. On neuroleptics I found it difficult to focus on the text I was reading. Interestingly, reading aloud was helpful. And whenever I saw a long paragraph, I simply felt unable to read it. Again, it was caused by neuroleptics and disappeared when I decided to come off them.
There was also one neuroleptic at hospital – perphenazine (Trilafon) – which actually made me completely unable to read. I just could not read the letters on a page, as if something had happened to my eyesight! So the effects I am describing were 100% caused by neuroleptics and very depressing.
I strongly feel that you find symptoms of “schizophrenia” in yourself because you believe that you suffer from this illness. But e.g. the fact that your thinking sometimes seems “not as right as it should be” to you or your difficulties with speaking in public, or even the need to leave the classroom in the past, are NOT symptoms of a mental illness.
The idea that there is a “schizophrenic smell” is astonishing and I see that Hoffer described it in an article simply as a “powerful” body odor. There is absolutely no scientific proof that there is a “schizophrenic” body odour. You know, people may actually have delusions about their own body odor! And some patients in mental hospitals have a body odor simply because they don’t wash. I remember a young man at the hospital who had an unpleasant body odor – he smelt like someone who had not washed for a long time.
As long as you believe that there is really an illness called “schizophrenia”, that you have it and that Dr Hoffer is an expert on it, you will be convinced that you have or had all kinds of symptoms of this disease, including the “schizophrenic smell”. But you may be actually pathologizing completely normal things. You may try this thought experiment: ask yourself if what you see as your “symptoms” could be explained in a different way. As an example, you sometimes left the classroom simply because you were bored or anxious?
And the freckle-like pigments you have noticed may be actually caused by large doses of vitamin B3. I encourage you, once again, to be careful because large doses of this vitamin may even cause liver damage and problems with eyesight.
Finally, please remember one thing regarding Dr Hoffer: he was not someone labelled with “schizophrenia”. He was a psychiatrist. He claimed that schizophrenia was a real illness, not a diagnostic construct. There is no reason to trust Hoffer more than any other psychiatrist đ
I generally agree with you about negative symptoms. But I dealt with fatigue, certain difficulty with reading, some difficulty with quality/quantity of relationships, depression, sudden need to leave classrooms, and so on, before ever being on pharmaceuticals. I suppose I should point out that I used cannabis and tobacco. I am aware of and support the nuanced perspective on these things….difficulty with reading due to TOO MUCH READING AND WRITING/information overload, fatigue due to lungs full of tar, paucity of speaking due to being super-reflective and a need to choose words carefully, and because I was still learning and had many Big Questions. But your description of stigma, rejection/misunderstanding, isolation, and being poor couldn’t have been said better. I decided to stop Prozac when, after normally taking it before sleep, I took it after dinner, and I could then not even read. I thought ‘this can’t be good’, so I can relate to your point on this in a thousand ways. My use of micro-dosing ketamine this year profoundly changed my thinking quality and quantity, and I once again began, and still do, read A LOT.
Evan, thanks a lot for your reply and for telling me more about your experiences, views and research. I am soon going to respond at more length and will use your e-mail address, as you suggest.
Yes, I know that psychosis is something real. I can say it because I knew what was going on with me when I had a psychotic episode. I was “hearing voices” and had paranoid delusions for many weeks; I often “heard voices” all night, without being able to sleep! The “voices” and delusions were often terrifying.
I think that some people claim that there is no such thing as psychosis either because they have never really experienced a psychosis (with very distressing hallucinations and/or delusions), or because in their case the tendency to delusional thinking is chronic and they are not even aware that they are often not thinking in a rational way. As an example, there are people who claim that they have the resist someone’s advances, though the person is not really making any advances!
I can also add that it is definitely not true that “psychosis is always caused by psychiatric drugs”. I have never taken any psychiatric drugs or even seen a psychiatrist before my psychotic episode!
For now, let me just address three other important points: first of all, don’t you think that taking large doses of vitamin B3 may be actually dangerous? I know that this is what Hoffer recommends for “schizophrenia”, but it does not mean that it is safe.
I know that you like Hoffer’s approach, but he clearly thinks that “schizophrenia” is caused by biological factors. As you said, he does not even take into account e.g. the role of trauma. He thinks that the deficiency of vitamin B3 causes many cases of “schizophrenia”, but how does he know it? Isn’t it only a hypothesis? And let’s not forget that “schizophrenia” is in reality merely a diagnostic construct.
You mention your use/overuse of cannabis and psychedelics in the past. I am sure that these substances have largely contributed to your symptoms. People who are prone to psychosis have to be really careful and unfortunately can’t see cannabis as harmless. I even think that if you had never used these substances, you would have probably never been diagnosed with “schizophrenia”. Many people diagnosed with “schizophrenia” are or were earlier using drugs, including cannabis.
As I told you, I have noticed myself that drinking a strong alcoholic drink (it was actually Cointreau – I did not realize how strong it was and drank too much of it!) caused a weird experience which was similar to psychotic symptoms. It is not surprising because alcohol causes a rush of dopamine. So I am never saying that there is no link between the biology of our brains and psychosis, but mainstream psychiatry minimizes the role of psychological and social factors.
On a final note, yes, I am definitely going to check out Di Caprio’s docu about Szukalski – I have heard about this very eccentric artist, but have not yet had a chance to see the docu đ
Evan, thank you so much for sharing your own experiences with such openness – I really appreciate it. Good to hear that you now feel better than before, that you have been able to largely decrease your neuroleptic dose and that you have also been able to get off tobacco! Thanks a lot for the link to your website.
Of course I am not really surprised by the depressing similarities between American and Polish psychiatrists – and I like the fact that you compare psychiatrists to abusive parents. However, I must say that I have never expected this psychiatrist to be as impatient and rude as during my latest appointment with him! This was simply unbelievable, and I strongly feel that I was treated in this way because I angered him by my “disobedience”.
Yes, it is tragic and heartbreaking that people diagnosed with “schizophrenia” die on average 20 years earlier and society does not see it as a serious problem (of course many people are unaware of it). Shockingly, a powerful Polish psychiatrist actually claims that these deaths are caused by the impact of the illness on the central nervous system, though it is blatantly untrue: no one has ever died from “schizophrenia”!
As you can see, I don’t embrace the term “schizophrenia”. First of all, this diagnosis is often very arbitrary. I was diagnosed with “schizophrenia” after only one psychotic episode 8 years ago and my diagnosis has never been changed, though it is obvious for me and people who know me that I don’t have any “symptoms”. There are also many people diagnosed with “schizophrenia” who are using or used street drugs or who suffer from alcoholism – their “symptoms” may be largely caused by substance abuse.
There is no scientific proof that an illness called “schizophrenia” truly exists. Of course there is no denying that people can suffer from hallucinations and delusions, but it does not prove that they suffer from a life-long illness. The concept of “schizophrenia” has been criticized by many authors, among others Mary Boyle (in her book “Schizophrenia: A Scientific Delusion?”), Richard Bentall (he said: “the concept of schizophrenia is scientifically meaningless. It groups together a whole range of different problems under one label – the assumption is that all of these people with all of these different problems have the same brain disease”; he criticizes this label in a book he edited, “Reconstructing Schizophrenia”) and Suman Fernando (you will find one of the articles co-authored by Fernando here: https://www.academia.edu/8655752/Questionain_schizophrenia_as_a_diagnostic_label).
On your website you mention, among others, “disordered thinking” as a symptom of schizophrenia. Of course this is what mainstream psychiatrists say about schizophrenia. But “disordered thinking” is a very vague term; and I am wondering what actually makes you feel that you suffer from “disordered thinking” because you sound perfectly logical and coherent! Of course there are people labelled with “schizophrenia” who talk/write in a way which seems incoherent and which may even be impossible to understand, but this may actually be an effect of the damage caused by neuroleptics.
Regarding the so-called negative symptoms of schizophrenia – social withdrawal, apathy, lack of motivation etc. – nothing proves that they are caused by an illness. Neuroleptics can cause apathy and constant tiredness, and when I was on neuroleptics myself, even a simple conversation was exhausting to me because I felt a terrifying emptiness in my brain (and I am normally a talkative person!). Even a very short walk was tiring. And I was even unable to read a long paragraph in a book, though I have always loved books.
And there is nothing surprising about the fact that people labelled with a deeply stigmatizing diagnosis, people who are often socially isolated and poor, who have often been rejected by their former friends and who may feel utterly hopeless tend to feel apathy, to be socially withdrawn and lack motivation!
When people come to believe that they really have a life-long, incurable illness called schizophrenia, of course it frightens or even terrifies them and often makes them feel hopeless. In my case, I was so devastated by the effects of neuroleptics that I soon tried to find out if I really had to take them – if there was really no hope for me. I also very strongly felt that I was not mentally ill – that I had recovered from the psychotic episode. This helped me come off my neuroleptic (obviously psychiatrists were against it) and it has been one of the best decisions in my life.
I now think that I would have come off neuroleptics even if I had believed at that time that I had schizophrenia. In fact, I realize that some of the more open-minded psychiatrists might believe that my diagnosis was correct, but that I have been very lucky and that I am simply a “highly-functioning” patient. I would have no problem with it, as long as they don’t assume that I should take neuroleptics! In fact, I do sometimes have auditory hallucinations when I am very stressed, but very rarely – and I have not had them at all for almost 2 years. I also have to be careful with strong alcoholic drinks – I have once found out that in my case they cause experiences somewhat similar to auditory hallucinations (the feeling that I have no control over my own thoughts – that they are somehow entering my mind from the outside).
Finally, let me say what has helped me stay in good mental health since 2012 despite various painful experiences: I get as much sleep as I need; I eat healthily (with plenty of vegetables); I am doing things I love doing; I try to avoid any situations and people I find toxic; I avoid comparing myself to “typical” people; I go on long walks in parks, even in winter; I listen to soothing music; I don’t feel bad because of having very few friends (and none where I live) – the friends I have are real friends; I often talk/write to my closest family members (I live alone); I am also quite active in online feminist groups etc.
Evanhaar, first of all, I do believe that mental health problems exist. I just don’t believe that mental illnesses/disorders are incurable brain diseases which necessitate life-long pharmacological treatment with all kinds of toxic effects. I am against mainstream psychiatry.
Let me explain that I was personally diagnosed with “schizophrenia” in 2012, after one serious psychotic episode which was probably a reaction to emotional trauma. I decided to come off neuroleptics, though psychiatrists believed that I should take them until the end of my life. I have never had a “relapse”, but my diagnosis has never been changed.
I avoided the psychiatric system for almost 7 years. Unfortunately after losing my job I was forced to apply for a disability pension in order to have a regular income. For this reason I have to see a psychiatrist once a year. My psychiatrist (he is the one who diagnosed me with “schizophrenia” in 2012) was very impatient and rude during the latest appointment: he clearly does not like the fact that I come to see him only once a year. He actually doubled the dose of the prescribed neuroleptic without giving any explanation (fortunately I have no intention of taking the neuroleptic!).
I have to explain that I live in Poland where psychiatrists – especially public sector ones – don’t have to be polite towards patients. I was not even able to ask this doctor to stop interrupting me, to stop being rude, to stop treating me like a nuisance. I felt that he was so unpleasant because he sees me as a “non-compliant”, rebellious patient, but also because I am a woman. I don’t want to ever see him again – I prefer to pay a private sector psychiatrist next year, though I am poor.
As I said earlier, I don’t have problems with the term “patient”, but I am firmly against the approach of mainstream psychiatry towards “people/patients/clients with mental illness”. If I obeyed psychiatrists, maybe I would be now seriously physically disabled because of tardive dyskinesia or even dead, though I am only 40. And I would feel like a zombie. People diagnosed with “schizophrenia” die about 20 years earlier on average – largely because of the effects of neuroleptics and because of the stress and poverty caused by stigmatization (sadly many of them also smoke…).
Evanhaar, let me first make it clear that I have personally refused to be a “patient” or a “client” of the psychiatric system. I also think that it is very toxic to see any of these labels (“patient”, “client”, “service user”, “consumer”) as a part of one’s identity – or even as its central part.
One of the cruelties of modern psychiatry is that it encourages many people with psychiatric diagnoses to believe that their main or only identity is being a user of the psychiatric system – that this experience defines their whole identity. This is disguised as harmless, but it causes untold damage.
However, I don’t find the term “patient” problematic when it is used in the same way as in the case of people with physical health problems who seek medical help. As I said earlier, in the psychiatric context “client” (just like “consumer” or “service user”) is merely a euphemism, a way of “politely” avoiding hurtful and deeply stigmatizing words like “mental illness”. “Client” may seem neutral and dignified, but in reality it is used to describe people who supposedly need psychiatric care and treatment until the end of their lives – unlike “normal” people.
Evanhaar, thank you for this very interesting comment. I would say that terms like “service-user”, “consumer”, “client” etc. are ugly euphemisms, used in order to avoid the terms “psychiatric patient” or “a person witb mental illness”. As you rightly point out, the terms “service-user”, “consumer” or “client” are never used in the case of patients who don’t have psychiatric diagnoses. And these terms indeed imply a permanent role/identity, without the prospect of a possible recovery.
Sam, you are totally right. This is a very interesting interview, but it is clear that Tanya Luhrmann believes that “schizophrenia” is an objectively existing illness. It is also striking that she mentions a man who came off neuroleptics and later “disappeared into the anonymous world of the homeless” – she seems to imply that this is what awaits people diagnosed with “schizophrenia” who stop taking their “meds”…
She earlier says that an Indian woman she met “would look pretty ill” according to standard psychiatric criteria, but in reality was “really functional”. It is surprising that such observations have not made Prof. Luhrmann much more critical towards psychiatry, its concepts and its methods.
Rich, thank you for sharing your story with us. You are actually doing something very important and beautiful – much more important and beautiful than many paid jobs. I am sure that there are women who would be ready to accept you just as you are – there are many women who simply look for love and companionship, for a good, caring, sensitive man. And if anyone asks you “What do you do?”, you could say that you are a carer and an activist!
NotCrazyAfterAllTheseYears, I understand you so well. So many people assume that there is something wrong with those who simply love solitude… This idea that everyone should crave and enjoy “socializing” with coworkers etc. is very oppressive. I understand your feeling that you were losing time you needed for other things; this is one of the reasons why I have always avoided all kinds of work social events. And I, too, have been using long walks for therapy (and exercise) for years!
Very good advice, oldhead, but the Asperger’s syndrome diagnosis may be very helpful in my attempts to prove that I deserve to get disability money – and if I have to explain to people why I am leading a reclusive life đ
Sam, I totally agree with you. Why should we assume that “normal”, “healthy” people should be capable of enduring huge amounts of stress without ever “crumbling”? Many people are not aware of the impact of stress on their mental and physical health. We live in a world where people are expected to be like robots – constantly full of energy, productive, enthusiastic and ready to take up new challenges… Unsurprisingly, many people’s minds and bodies end up being damaged under this pressure.
Very true, Sam! I find today’s cult of workaholism and generally of ceaseless feverish activity (you put it so well) both bizarre and depressing. People need time to think, to interact with their fellow humans, to connect with nature… It seems that many people now live without ever really stopping to think about their lives.
KateL, I am so sorry that you have suffered serious memory loss because of ECT. It is truly shocking that the psychiatrist actually later callously claimed that you had a personality disorder!
I am happy that you have stopped feeling guilty because of being on disability, and I hope that the shame will also soon disappear. There is absolutely nothing wrong with being on disability. The idea that those who don’t have a job should be ashamed of themselves is profoundly toxic and reflects the cruelty of the world we live in…
I am glad that you found my story interesting! What I meant is that the idea that people diagnosed with schizophrenia should all strive to have a paid job is inherently toxic. For many of them this is simply an unachievable goal, especially if they disclose their diagnosis to potential employers. And many jobs in today’s societies are much too stressful for people prone to psychosis and paranoia… Finally, psychiatric survivors frequently have very limited social networks, which makes it even more difficult for them to find paid employment.
There are all kinds of meaningful things one can do without having a paid job – including helping other people. This winter I was able to help my brother who had been put on a locked psychiatric ward because of suicidal thoughts. I was able to visit him every other day in hospital and I stayed for a month with him after his release. I would not have been able to do it if I had a job.
My life is filled with intellectual activity (I even translated a book last year for a publisher), and I also try to support and encourage other people whenever I can. I am aware that I am actually saving the public health care system plenty of money thanks to my recovery and my decision to get involved with the psychiatric system only when it is unavoidable.
I think that we should question the assumption that people are “productive” only when they are in paid employment. Care work and domestic work is very often unpaid, though it is of crucial importance. Intellectual and artistic work, too, is often unpaid or badly underpaid.
As I explained earlier, I did try to find a job despite my schizophrenia diagnosis – and I was unable to reach this goal despite my PhD, my work experience and the fact that I did not disclose my diagnosis. I also tried to get admitted to a course in Addiction Counselling, but I was not admitted – for reasons which have never been revealed to me.
I refuse the idea that I should feel bad because I am not in paid employment… If I had kept desperately trying to find a job without having any source of income, this would have been devastating to my mental and physical health. Accepting a job which might have triggered a breakdown would have been only slightly less devastating.
What a deep and brilliant song! “I’ll consume my consumers, with no sense of humour/I’ll give you a uniform, chloroform/Sanitize, homogenize, vaporize you”… So true! I have always hated so much the ugly euphemism “consumers”. I was certainly not a “consumer” when I was forcibly drugged for more than a month in a psychiatric hospital.
I was diagnosed with schizophrenia 8 years ago, after a psychotic episode (I have never had a so-called relapse). I completely reject this diagnosis and I came off the prescribed neuroleptic as soon as it was possible.
I am a PhD holder and I worked for 10 years as a university lecturer (I returned to work after my psychotic episode, without telling anyone at work about my diagnosis). However, I found this job very stressful and I felt extremely isolated in my workplace. I am currently in the process of being diagnosed with Asperger’s syndrome.
I have not been able to find a new job after my university job contract expired (I live in Poland where even a PhD does not guarantee a decent job; I could try to find a job as a schoolteacher, but I know that this job would be much too stressful for me). I finally decided to apply for a disability pension last year on the basis of my schizophrenia diagnosis.
I now feel happy and peaceful, though unfortunately this year I have to reapply for the disability pension despite my diagnosis. (In fact, in Poland – unlike in the US – even people diagnosed with schizophrenia have to prove, again and again, that they are unable to work.) I am worried because my psychiatrist (whom I have not seen for a year) might find out that I have not been taking neuroleptics. I know that I don’t need these drugs and that they are very toxic.
I think that it is important to realize that some people can be perfectly happy without a job. My life is not boring or empty; I now feel so free and I can do what I love. I must also add that I feel much better with people from whom I don’t have to hide the fact that I am a psychiatric survivor. My best friend is also diagnosed with schizophrenia (like me, he is not taking neuroleptics).
Ann, I had a very similar experience with a psychiatrist seven years ago. He told me after one conversation with me (it was the only time when he saw me) that I did have schizophrenia and that if I stopped taking neuroleptics, I might develop “drug-resistant schizophrenia” and need electroshocks.
He told me that I did have schizophrenia, though I was no longer having any psychotic symptoms and though I was working at a full-time job. He did not realize, however, that – like you – I was secure enough not to listen to him and was actually no longer on neuroleptics while talking to him.
I have had only one psychotic episode (in 2012). Since that time I have never had a so-called relapse, though I have not been taking any psychiatric drugs since November 2012. I am so happy that I did not listen to psychiatrists in 2012!
I, too, would like to thank John Hoggett for his comments. Those who are against possible future Covid-19 vaccination forget how many people this virus has already killed.
I have been personally vaccinated against tuberculosis, diphtheria, tetanus and pertussis (this was mandatory in my country) and also against yellow fever (before a travel to Africa). What harmed me was not any of these vaccines, but an anti-malaria drug called Malarone which can cause auditory hallucinations (“voices”).
I can’t really understand why many people are now so afraid of vaccines – but it must be largely because all kinds of weird “theories” can be now very easily spread thanks to the Internet.
I am firmly against forced psychiatric drugging, but this does not mean that I also reject modern medicine and the idea of mass vaccination against dangerous viruses and bacteria.
In Nazi Germany the “schizophrenia” label was not a way of silencing dissenters. The Nazis simply wanted to exterminate all people diagnosed with “schizophrenia”. The victims of this genocide were psychiatric patients – not dissenters.
Bippyone, you don’t seem to see how fast the numbers of deaths are rising because of this pandemic. And if lockdowns had not been introduced, these numbers would be much larger. Even in the UK it is already more than 1400 deaths – twice more than only 3 days ago – and the number is still rising!
Air pollution is down etc., but at what cost? More than 37,000 people have died and so many more will die – what about all these lost lives, all these people who could not breathe, all these people who died because there were not enough respirators? And I don’t think that the pandemic will be enough to bring real global and lasting change in attitudes towards the environment!
What helped me was learning not to worry about what other people think about me and my life; doing things I love and supporting struggles I find important (the struggle against coercive psychiatry is one of them); trying to find people who accept me as I am; learning to appreciate more all the good things in my life instead of suffering because of unachieved goals or dreams.
I have to disagree with Bippyone that life is worth living only if we are loved. Those of us who feel truly loved by many people are lucky. Some people do/did not feel loved even by their own parents… I personally started feeling much more free and much less frustrated when I realized that I might never find someone who would love me in a romantic, passionate way and that I should not feel like a failure only because I have not found such a person.
Rachel, where have you read that “even frail octogenarians in nursing homes are more apt to beat the bug than die. 90% survival odds in worst case scenarios”? Very large numbers of people have allegedly already died in care homes in France and Spain. I have read that according to experts up to 100,000 people may die in French care homes.
I think that the fatality rate for frail octogenarians is much higher than 10% – and even higher if they live in care homes. Let’s remember, too, that many people die because there are not enough respirators.
Tina, could you post any links (they can be in French) proving that in France “people with a psychosocial disability who are infected with COVID-19 have been turned away from mainstream hospitals and treated instead in psychiatric institutions or in mobile hospitals that lack the necessary infrastructure”? This is horrible!
And I think that one’s chances of reintegrating mainstream society after an episode of psychosis are much higher than you believe. The problem is that so many people don’t realize that recovery is perfectly possible, that the very concept of “schizophrenia” has no scientific validity and that it is absolutely not true that people with this diagnosis have to take antipsychotics until the end of their lives. When people see themselves as incurably mentally ill, recovery is very unlikely.
Another problem is the persistent stigmatization of people diagnosed with “schizophrenia”. The label is so stigmatizing that it has a very damaging impact on a person’s self-esteem (for some years I was not even aware how damaging it was to my own self-esteem) and life. People diagnosed with “schizophrenia” are still very often discriminated against by society if they are open about their diagnosis or their stay in a mental hospital.
And when people diagnosed with “schizophrenia” don’t fully reintegrate mainstream society in the sense of having a job, getting married etc., in many cases it is not because their mind is broken, but because leading a “typical” life would be much too stressful for them and because some of them have never found socializing easy… I personally think that my experiences with being frequently rejected and excluded by my peers and co-workers have not only contributed to my psychotic episode, but also explain why I now don’t feel ready to work in jobs where I may again feel painfully rejected and excluded by other people.
yeah_I_survived Unfortunately society in these times was also very harsh, inhumane and cruel… The author mentions so-called workhouses: English people who were deemed fit to work, but were unable to support themselves were routinely sent to these institutions where they had to live and work in horrible conditions.
neo_liberalism_say_what, many thanks for your comments! I was very surprised by the author’s implication that the rate of recovery after the first episode of psychosis is very low even if people are not on antipsychotic maintenance treatment…
Another quote from the article (page 10): “The Jamaican contribution to GMH incorporates the evidence-based Western biomedical psychiatric models but adds to them our decolonization experience of the 50-year post independence comprehension from colonial Britain.” So the Jamaican model does NOT reject the biopsychiatric approach…
Unfortunately – as Boans has pointed out – neuroleptics are part of the Jamaican model of mental health care. In his article, Prof. Hickling quotes an author who writes that (compared to Britain) in Jamaica:
“There seems to be a much greater willingness on the part of families and neighbors to cooperate with the services,locate people when they need help and make sure they take their medicine. Itâs accepted as part of the communityâs responsibility”. (one can download the whole article for free here: http://sci-hub.tw/http://doi.org/10.1177%2F1363461519893142).
So making sure that patients take their “meds” is, sadly, part of this model – and Prof. Hickling clearly has no problem with it…
survivingthesystem, I am very sorry to hear about your experiences. And I totally agree with you: I, too, felt dead inside on antipsychotics. I was unable to have a normal conversation. I was unable to write in an interesting, imaginative, creative way. I found reading tiring and I was unable to read a long paragraph in a book – on Abilify I was scared whenever I saw a long paragraph, though I have always been a book lover!
I also suffered from horrible akathisia which made even commuting to and from work quite stressful. And at work I was happy that thanks to my job (university lecturer) I was able to walk in the classroom in order to cope with my akathisia.
I felt an immense relief when I came off Abilify – I felt that I became again my old self!
Rosalee, of course I agree with you that psychiatric labels very often lead to discrimination by the health care system. Is it possible to get re-diagnosed in Canada? In my country, Poland, fortunately doctors who are not psychiatrists don’t seem to be aware of my diagnosis (“paranoid schizophrenia”); and even if they were, I know where and how to check if I am getting the right treatment for a disease, I know how to stand up for my rights, and I know what to do if I am ever discriminated against.
It seems to me, however, that Sam was talking about the impact psychiatric labels have on people’s self-esteem – about “shaming” by psychiatrists – and this is what I commented on.
In my case, my “paranoid schizophrenia” diagnosis really damaged my self-esteem for some years, though I quickly rejected this label. But I am sure that it would be much more damaging if I had not realized many years earlier that people’s opinions about me did not define me…
Sam, it is perfectly possible to free oneself from the fear of being “the loser”. It is perfectly possible, too, to stop worrying about the opinion of people who want us to feel bad about ourselves.
I have personally often faced rejection from my peers since I was a little girl. My being a very academic, bookish and introverted girl was certainly one of the causes of this rejection. I have never been “popular” and I just accepted it instead of trying to please people who disliked me, rejected me, and maybe also felt threatened by me.
I have gradually stopped worrying about what narrow-minded, intolerant people might think of me. Why should such people have power over me? I think that my independence was one of the reasons why I found it very easy to disobey the will of doctors who thought that I was “mentally ill”, though they knew virtually nothing about me and my life.
DShanin, you did say in your comment: “After antipsychotics, brain becomes more susceptible to sounds of voice. This makes a person safer for society.”
DShanin, what makes you assume that people are prescribed antipsychotics in order to be “safer for society”? I am always depressed by the assumption that people who have experienced psychosis are dangerous. I was prescribed antipsychotics, though I was never violent and no one was afraid of me. I was prescribed antipsychotics only because I had a psychotic episode. I have never caused any trouble to anyone since coming off these drugs…
Sam, you are so right! I think (hope) that psychiatry is unable to stop the processes leading to greater respect for individuals’ rights. I hope very much that forced drugging will be increasingly recognized as a violation of basic human rights.
One of the problems is that many people seem to be unaware that many patients are literally forced to take psychiatric drugs (even when they are very quiet on the ward and don’t violate any rules!). Another problem is that many people generally know very little about those who have experienced psychiatric incarceration and are often ready to believe all kinds of negative stereotypes.
In consequence, there is little or no compassion for people forced to take these drugs in mainstream society. The assumption seems to be that they “need” these drugs – and/or that they are so different from “normal” people that it is difficult to relate to them and their experiences. The power of stigma continues to silence countless people who know what it’s like to be on a locked ward…
Yes, in a way he admitted that the drugs might not work, but obviously what he meant is that they might not work for “uncooperative” patients who don’t want to obediently take the “meds” they were prescribed! It’s a pity that I didn’t have duct tape on me đ
In my country (Poland) ECT can still be used as a treatment for schizophrenia if neuroleptics don’t work. Fortunately even in Poland even involuntarily committed patients always have to agree to ECT, unless doctors believe that their is a direct threat to the patient’s life. This was one of the reasons why I was not scared when the psychiatrist mentioned ECT!
Steve, I totally agree with you: most psychiatrists accept only “recovery” on their terms, that is, when a patient agrees to take neuroleptics until the end of his/her life and becomes a compliant member of society! The way John Nash’s story was distorted in “A Beautiful Mind” is simply disgusting, though not in any sense surprising…
Rachel777, it sounded indeed like a threat, and I am so glad that I already knew at that time what to think of it!
I fully agree with you that people who recover make most psychiatrists feel very uneasy. I agree, too, that many (if not most) psychiatrists are not sadistic. However, it is difficult for me to say if they really believe that “schizophrenia” is a debilitating brain disease etc., or if they are simply afraid of challenging biopsychiatric beliefs.
Another psychiatrist claimed that I had “disorganized thinking” and was unable to explain what he meant. Until today I don’t know if he really believed that there was something wrong with my thinking because of my diagnosis, or if this was something he felt he had to say as a psychiatrist talking to a patient with “schizophrenia”.
Many thanks for sharing your story, Laura. I am very sorry to hear that you are still forced to undergo injections of an antipsychotic. The forced drugging is one of the things which make me very angry about psychiatry.
I am actually almost the same age as you (I will be 40 in June), and I was diagnosed with “schizophrenia” in 2012, after only one psychotic episode (I was hearing “voices” and I was very paranoid). I was involuntarily committed to a psychiatric hospital for more than a month. I decided to come off neuroleptics some weeks after my release from the hospital. Fortunately no one had the right to force me to take them again. I have never had another psychotic episode.
I don’t currently have a regular job (I work as a freelance translator and I get a disability pension thanks to my diagnosis), but I feel very happy and I have been leading a completely normal and fulfilling life since my stay in the mental hospital in 2012.
I am very impressed by your openness and by what you have achieved, and I hope very much that you will find a way to free yourself from neuroleptics. I wish you all the best.
I actually had a very similar experience with a psychiatrist in 2012. I wanted my schizophrenia diagnosis reevaluated (I had fully recovered from a psychotic episode and I knew that I no longer had any hallucinations or delusions).
The psychiatrist (quite an unpleasant man) asked: “Do you always talk so much?” When I said that I did, he claimed that I might have not only schizophrenia, but also “an affective disorder”. He said that if I did not keep taking my “meds”, I could develop “drug-resistant schizophrenia” and need electroshocks.
Unbeknownst to him I had already come off Abilify (without any difficulties). For almost 8 years I have stayed away from all kinds of psychiatric drugs despite my diagnosis. I was never hospitalized again. This psychiatrist tried to scare me into being a compliant patient and clearly found me annoying!
Fiachra, great to know that you, too, came off neuroleptics a long time ago – and I fully agree with you that “schizophrenia” does not exist! I have recently noticed that some young men who have been using street drugs are diagnosed with “schizophrenia” in my country. Sadly, many of them think that they really suffer from a severe mental illness and become long-term psychiatric patients…
I have recently had to tell my own brother who had spent some time on a locked ward because of suicidal thoughts that he, too, might one day be diagnosed with “schizophrenia” if he is not careful…
And – very importantly – this new drug can also cause tardive dyskinesia. The prescribing information leaflet even states after mentioning TD: “In patients who do require chronic treatment, use the lowest dose and the shortest duration of treatment producing a satisfactory clinical response. Periodically reassess the need for continued treatment.” (page 2 here: http//www.intracellulartherapies.com/docs/caplyta_pi.pdf).
But we all know that people with a diagnosis of schizophrenia are usually put on neuroleptics for life… I came off a neuroleptic about a month after my first and only psychotic episode in 2012 (I was diagnosed with “schizophrenia” after this episode). Coming off the neuroleptic has been one of the best decisions in my life. I have never had a psychotic episode again despite my diagnosis…
You are so right, Steve! “All volunteers with schizophrenia were on antipsychotic medication (mean [SEM] chlorpromazine-equivalent doseâ=â443.5 [89.6]âmg/d” http://www.nature.com/articles/s41467-019-14122-0 .
Kindredspirit, unfortunately the main problem with âantipsychotics” is that many people are literally forced to take them. I did not beg to try something – like many others, I was forced to take neuroleptics when I was involuntarily committed to a mental hospital. This is one of the most barbaric aspects of psychiatry!
Dear Vitas, thank you so much for sharing your powerful, deeply moving and excellently written story. I can relate so much to your experiences because my only psychotic episode, 7 years ago, was clearly caused by a relationship breakdown.
I started “hearing voices” when I felt rejected by a man I loved. I was involuntarily committed to a mental hospital and put on neuroleptics – with horrible side effects, especially in the case of Trilafon (perphenazine) – and I experienced the dehumanizing atmosphere of a locked ward. I did not receive any psychotherapy at the hospital where I spent more than a month – I was kept there even when I no longer had any symptoms.
Fortunately I decided to come off neuroleptics a month and a half after being released from the hospital and I have never used them again. I have never had another psychotic episode, though psychiatrists claimed that the one I had experienced was caused by a chemical imbalance in my brain… I wish you all the best and thank you for being so open about your experiences.
Thank you for explaining your situation, maradel. Fortunately I know for sure that doctors don’t know about my psychiatric diagnosis. And even if a doctor finds out about it one day, I am not worried because after my psychotic episode I had absolutely no contact with the psychiatric system for more than 6 years – doctors would probably assume that I must have been misdiagnosed or that I am a case of full recovery from schizophrenia.
No one knew about my diagnosis in my former workplace – I did not tell even my boss about it. Wherever I go, no one knows that I was once an involuntary mental patient.
In my own experience, some doctors have been clearly impressed by my education level and outspokenness. The head doctor at the mental hospital even lent me a book on the history of psychiatry and was very respectful towards me. Another doctor (a non-psychiatrist) not only likes me and respects me, but has once even shared with me an article from a medical journal! So fortunately there are doctors who don’t feel threatened by women with doctorates…
At the same time, I have to admit that I am trying to avoid conflicts with doctors unless I strongly feel that I have to stand up for myself. As to compliance, in my opinion a certain level of compliance is very wise in psychiatric hospitals. Thanks to my compliance I was not put into restraints and I did not undergo forced injections. Thanks to my compliance I was not really traumatized by my stay in the mental hospital. Sometimes it’s better to be compliant – it can even save our life…
I understand, Rachel, but still they have no right to yell at you – it increases your stress, and I don’t think that it will make you stop… Maybe you could try to replace scratching by vigorously massaging your scalp with your fingers? But such habits are not unusual in any sense – my mum used to bite her nails until they bled when she was a young girl…
I think that your family members don’t realize that they are hurting you emotionally. Maybe they have not experienced healthy, non-abusive love themselves!
Rachel, how can your relatives yell at you? They are behaving in a very abusive way and they should stop thinking that your “illness” gives them the right to abuse you. This is emotional abuse of the worst kind! I would stop visiting people who are so abusive!
maradel, as someone diagnosed with paranoid schizophrenia I definitely don’t think that the diagnosis in itself is worse than the damage caused by psychiatric drugs. I got my diagnosis more than 6 years ago, but I am able to lead a normal, happy and free life because I was on neuroleptics only for a short time.
Very few people know about my diagnosis, so it is not really stigmatizing to me. I am very glad that I never told anybody in my former workplace that I had been diagnosed with schizophrenia. Keeping this secret has been much easier to me than facing the consequences of “coming out”…
If your disability results from failed surgeries, why did you have to reveal your psychiatric diagnoses when you applied for disability? This is something I feared myself in the past – the possibility of being treated worse than other patients because of my psychiatric diagnosis. I am so sorry about the way you are now treated by doctors! But doesn’t their attitude change when they find out that you have two doctorates? (I am sure that my own PhD and my academic job made doctors and nurses treat me better when I was at a psychiatric hospital).
I think that migrating to another country is a great idea in your situation – wonderful that it’s possible for you! And you are right: fear of those who are different is surely one of the main reasons why “mentally ill” people are treated so horribly!
yeah_i_survived: Like you, I am pessimistic about Hollywood. However, “55 Steps” is not a Hollywood movie – it is a German-Belgian coproduction and it will be released only in select cinemas in the US. I really don’t think that such a film could have been made in today’s Hollywood!
As to actors, let’s not forget that Kirk Douglas wanted to turn “One Flew Over the Cuckoo’s Nest” into a film for years – and his son Michael co-produced it. So yes, there are actors who genuinely care about important causes, including the cause of psychiatric patients and survivors…
You are so right, Rachel! I am really fed up with the way “mentally ill” people are still portrayed in movies. I have even recently seen a seemingly well-intentioned indie movie where a woman who heard voices was a scary character who had killed her own son…
I agree, Steve, and thanks for the facts on John Nash. I was also able to “stay under the radar” – I stopped any involvement with psychiatrists after coming off neuroleptics in 2012 and since that time I have always been able to stay balanced, no matter what happens in my life. I think that those who want to suppress the truth about Nash are also acting on the assumption that the “mentally ill” don’t know what is good for them and have to be protected from any “dangerous” knowledge…
I agree with you: it was very impressive that Eleanor was able to live on her own, talk to lawyers, and generally live an independent life. And – very importantly – despite her traumatic experiences and suffering the film portrayed her as a happy, cheerful person who “every day found something in her life to enjoy, something to be grateful for”. In this sense the film carries a very uplifting message. I may have been too harsh in my earlier comments, though I continue to feel that this important and heart-warming film has some major weaknesses. I hope that one day many films will make it clear that the boundary between “mentally ill” and “normal” people is wholly artificial and incredibly harmful, and that neuroleptics are always toxic and debilitating and should never be used for a long time (if at all). Nowadays one really does not need a lot of money to make a film without stars or a documentary, and hopefully we will see many independent films challenging mainstream views on mental health issues.
Rachel, you believe that continual patronizing and put downs can cause childish behaviour. But was the real Eleanor childish? We don’t know what she was really like and if she would be happy with the way she was portrayed in the film…
Frank, I agree with you. I know that John Nash was not happy with the erasure of this crucial fact in the film about him. Mainstream elites seem to be scared at the prospect that “schizophrenics” may be encouraged to stop taking “their meds” by a film! Fortunately many people know that these “meds” are poison…
Rachel777, you are entirely right! And Eleanor Riese allegedly developed her “schizophrenia” after suffering childhood meningitis http://law.justia.com/cases/california/court-of-appeal/3d/209/1303.html . She even says near the end of the film “That was when they put the shunt in my head… to drain the water off my brain after I had spinal meningitis. Yeah. Before that, I wasn’t retarded, and nobody called me mentally ill. I was just like everybody else.” But this does not make her lawyer conclude that maybe Eleanor has never had any mental illness!
Concerned Carer: I was also probably hoping for too much! Obviously it is great that such a film was made. I think, however, that one could make a much better, much more powerful, much less patronizing and much less predictable film about Eleanor Riese. Powerful, uncompromising and non-patronizing films about “mentally ill” people are being made – the Romanian film “Beyond the Hills” (2012) by Cristian Mungiu is a great example. Unfortunately the people behind “55 steps” were much too Holywoodian in their approach and did not question many of the widespread assumptions about mental health issues and mental patients.
Helena Bonham Carter surely put a lot of effort into playing her character. The problem is, however, that she has clearly her assumptions about “schizophrenics” – that they are people who don’t look, don’t behave and don’t talk like “normal” people; who can say something considered rude out of the blue etc., who have their obsessions etc. This myth perpetuates prejudice towards psychiatric survivors, but the truth is very different. I have a close friend who was diagnosed with schizophrenia many years ago and who is not using neuroleptics; I was literally shocked when he told me about his diagnosis – it was impossible to guess from his behaviour and speech that he had been a mental patient (like me). By the way, he told me that he knows some people who have been clearly damaged by neuroleptics.
I would say that Helena Bonham Carter was trying too hard to transform herself into a “schizophrenic”; but there is no need for any transformation, unless we assume that a “schizophrenic” is somehow deeply different from “normal” people. I feel that Bonham Carter (unsurprisingly) wanted to show the range of her acting skills, her capacity for metamorphosis, but it came at a heavy cost: it was impossible for me to identify with Bonham Carter’s Eleanor, and the character did not make me think of any real people diagnosed with schizophrenia, but of Dustin Hoffman’s character in “Rain Man” or Sally Hawkins’s character in “Maudie” – two other excellent examples of actors doing their best to metamorphose themselves into an “odd” person.
Isn’t it striking that the reviewer from “Hollywood Reporter” http://www.hollywoodreporter.com/review/55-steps-film-review-tiff-2017-1036523 wrote: “The actress certainly dresses, speaks and moves as if she were in one of her former romantic and professional partner Tim Burton’s grand guignol Gothics. And her snarly demeanor and exaggerated body movements are so shamelessly self-indulgent that they demean the very person the movie aims to honor”?
I agree with Sera Davidow that it is an important film. However, I found it deeply disappointing, and in my opinion it does not truly challenge the status quo. The people who made the film are not against neuroleptics: Helen Bonham Carter believes that Eleanor Riese simply needed “the right amount of medication” (http://www.huffingtonpost.co.uk/entry/helena-bonham-carter-55-steps-interview-eleanor-riese_uk_5bc4f660e4b0fed45beb93d7). The film does not show or suggest that Eleanor Riese came off or wanted to come off neuroleptics! Eleanor’s diagnosis – paranoid schizophrenia – is not even once questioned in the film.
I found Eleanor’s portrayal very patronizing and cringeworthy. She is depicted as childish and even arrested in her psychological development – an exuberant little girl in a woman’s body – obsessed by her rosaries and completely asexual. The film offensively implies that mental patients are “children in adults’ bodies” and intellectually disabled. It will surely not convince “normal” people that mental patients are humans just like them!
Interestingly, the film never asks the question WHY Eleanor became psychotic and what made her completely suppress her sexuality. I know very little about the real Eleanor Riese, but she may have been a victim of sexual abuse or some other trauma before she became psychotic – the film never even suggests such a possibility because it chooses to portray “schizophrenia” as a mysterious brain disease…
I was also annoyed by the film’s ending. Eleanor Riese was killed by neuroleptics at the age of only 47. And because of neuroleptics she had to use a catheter to urinate for many years – I once had a catheter inserted at a hospital and I know how it hurts… But the authors of the film want us to feel good when the lawyer receives the award after Eleanor’s death – they want us to believe that this is actually a story with a happy ending!
It’s very sad that (in spite of everything she has found out) Helena Bonham-Carter says that Eleanor Riese started feeling better when she came âonto the right amount [of medication]â… So she is not against neuroleptics – she is merely against over-drugging. It is true that the film does not suggest in any way that Eleanor came off neuroleptics. And I guess that the other people behind the film have the same approach as Bonham-Carter… You write that the screenwriter, Mark Bruce Rosin, explained that the film couldn’t fight all the issues, but is there any proof that he knows that there is no âright amountâ of a neuroleptic? And can one find somewhere online Rosin’s explanations on the way neuroleptics were portrayed in the film?
yeah_I_survived: These “Christians” don’t know their Bible – Jesus healed a man who would probably be a mental patient today! The man lived in the tombs and cut himself with stones… One can find the story in Mark 5:1-20 and Luke 8:26-39.
Just an update on my story: I have never had a relapse of psychosis, though I have not been taking any psychiatric drugs for more than 4 years and though I have had some difficult experiences in recent years. I would like to emphasize that I have never had psychotherapy – so it’s perfectly possible to recover even after a full-blown psychotic episode without recourse to psychotherapy.
As to my friend (we later renewed e-mail contact), he has never said anything on my psychotic episode, but this does not surprise me: it is very difficult to discuss such taboo experiences.
In my case psychosis developed before I was put on psychiatric drugs and was clearly linked to a very painful personal experience. I had a psychotic episode in the summer of 2012 and I have never had a “relapse” (I have not been on any psychiatric drugs since mid-November 2013) so my psychosis was not caused by a long-term mental illness. My story proves that some people can become psychotic under the influence of trauma – and not because of a “psychiatric drug cocktail” served by cynical psychiatrists – and later make a full recovery. I think that such cases would be much more frequent if many people had not accepted the idea that mental illness is incurable and has nothing in common with a person’s experiences …
Thank you very much for your reply and your kind words, Steve ! Of course, I fully agree with you: there is such arrogance in some people’s belief that they “know” what it means to hear voices or to have delusions, even though they have never experienced it themselves. So many psychiatrists and other “experts” never really listen to the “mentally ill” and assume that they are all the same – strange and deeply miserable individuals with malfunctioning brains who have to be on neuroleptics “for their own good” …
A correction: my episode was almost 4 years ago, in August and September 2012. I was diagnosed with schizophrenia at that time, but fortunately I was rebellious enough to reject this life-shattering diagnosis and to come off neuroleptics. As I said earlier, I have never suffered another “psychotic” episode.
The voices did not return even when my father was dying from brain cancer at the end of last year. I am so happy that he knew until the end that his daughter was a happy and peaceful young woman who was wise enough not to believe what psychiatrists had told her and resilient enough to emerge as a stronger, more empathetic and more loving human being from a psychiatric hospital where she had been involuntarily committed …
The idea that people who hear voices have a “defect” which makes them unable to recognize their voice as their own is totally unconvincing to me. First of all, how to explain the fact that some people – like me – have had only one episode of voice hearing in their life, even though they are not using neuroleptics ? I had such an episode for more than a month almost 3 years ago – if I have a “defect” in my brain, why do I no longer hear voices ?
Secondly, I sometimes heard more than one voice (Eliezer Sternberg and Louis Gould would be unable to explain it) and the voice I usually heard sounded like the voice of a real person – someone whose behaviour contributed to my episode of voice hearing. The voices were also often saying very shocking or even terrifying things, things which were source of deep torment and most probably came from the depths of my unconscious. I was certainly not merely “talking to myself” and being unaware of it because of a “defect” in my brain !
Voice hearing, especially when it is related to painful or even traumatic experiences, is a far more complex phenomenon than Sternberg and Gould believe. Like so many others, Sternberg and Gould want others to believe that people who hear voices have malfunctioning, deficient brains. Like so many others, they do not even mention trauma and other psychological causes of psychotic experiences. They shamelessly perpetuate devastating biopsychiatric myths on “mental illness” and “the mentally ill”.
You mention the importance of “parental cruelty and contempt”, but there are people whose painful or even traumatic experiences have been caused e.g. by bullying at school. I think that there is a tendency to overlook the “cruelty and contempt” of people who are not our parents.
In my own case, I started being rejected by my peers at a very young age and without understanding why. E.g. at school I was the only girl who did not have any friends and was not invited anywhere by the other children.
Because of these experiences I learnt to assume that people were going to reject me and I was always surprised when they did not. I felt grateful to people who accepted me, including people who acted in an abusive way. In my 30s I had a psychotic episode when I felt rejected by a man I deeply loved and who was also my only friend at that time.
I have started unlearning the fear of being rejected by other people only quite recently (I am now in my 40s). So childhood trauma is not always caused by the behaviour of parents – it can be caused by the behaviour of other people, too, including other children. Let’s not assume that parents are always or almost always the ones to blame for people’s mental health issues.
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Birdsong, books and works of art can actually help people survive. James Baldwin, who was himself a very deep writer, said:
“You think your pain and your heartbreak are unprecedented in the history of the world, but then you read. It was Dostoevsky and Dickens who taught me that the things that tormented me most were the very things that connected me with all the people who were alive, or who ever had been alive.”
Novels, short stories, plays and poems can also tell us about crucially important things we have not personally experienced.
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Russian literature does speak to “people today” and one does not need a grammar school education to appreciate it. I am saddened by the idea that “people today” can be interested only in very recent films and books.
If one finds a novel too daunting, one can start from a short story. “Ulysses” is actually much more difficult than Chekhov or Dostoyevsky. “The History of the Peloponnesian War” is a historical work which should not be compared with novels and short stories. I also completely disagree with the view that Chekhov and Dostoevsky represent “right-brain maleness” and “do not speak to women”.
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Topher, I really appreciate your comment. I, too, am struck by the number of people who uncritically accept the ‘autism’ and ‘ADHD’ labels. As you said, these labels are now even seen as cool and plenty of people are self-diagnosing.
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I now see that “this work” meant “racial equity” work.
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“People always ask us: why do this work in suicide prevention when most of the people who die are white men? There are many answers to that.”
I am not sure if I understand this question. Does “this work” mean “racial equity” work or generally work in suicide prevention? Hopefully no one is implying that the deaths of “white” men are not a problem.
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Megan, many thanks for your brilliant and thought-provoking article!
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Matthew, a person can recover after being incarcerated on a psychiatric ward and forcibly medicated. I am saying it as someone who spent more than a month locked on a psychiatric ward and forcibly medicated.
But if one takes his/her own life, it is irreversible. A few years ago my brother spent 2 weeks locked on a psychiatric ward because of suicidal thoughts. His mental health has improved since that time. I am very happy that one of his friends decided to call the emergency services when my brother told her about his suicidal thoughts. My brother’s death would have been a tragedy for him and for our whole family.
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Thank you, Grace! This psychiatrist was one of the coldest people I have ever met in my life. Shockingly, he is also a psychotherapist… I wanted to talk to him because I had naively assumed that as someone with a research doctorate he would realize that there was no need to keep me on “maintenance treatment”.
I have discovered one fascinating thing: most psychiatrists seem to believe that a person diagnosed with “schizophrenia” by another psychiatrist must be mentally ill, no matter how s/he is behaving. I also suspect that if a person diagnosed with “schizophrenia” strikes a psychiatrist as somehow different from typical people, this reinforces the psychiatrist’s belief that the diagnostic label must be correct.
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Many thanks for your kind words, Grace! Fortunately I was not only aware that the psychiatrist was trying to scare me, but I also knew that no hospital performs ECT in my region and that in my country doctors do not have the legal right to force a patient to undergo ECT.
If I had not known about it, I would have been much more afraid of coming off my neuroleptic (ECT terrifies me much more than forced drugging).
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Thank you so much for this fascinating and uplifting account of your experiences and observations. I have started reading your book “Beating Depression and Bipolar Disorder without Drugs: A Memoir of Survival in a Male-Dominated World” – it is definitely worth a read!
Years ago a psychiatrist told me that I might develop “drug-resistant schizophrenia” and get ECT if I stopped taking the neuroleptic I had been prescribed at a psychiatric hospital (where I had been involuntarily hospitalized). Until today I find it very disturbing that he mentioned ECT in order to scare me into compliance.
He also asked “Do you always talk so much?” and claimed that it was another sign of my supposed incurable mental illness.
I have not been using any psychiatric drugs for more than 10 years and I have never again experienced involuntary psychiatric treatment. I am so glad that I did not take this psychiatrist’s words seriously…
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Tim, thank you so much for your very deep and insightful comment. I was diagnosed with “schizophrenia” after an episode of hearing voices and intense paranoid delusions. I was involuntarily hospitalized. It was more than 10 years ago and I have never had a relapse. I stopped using neuroleptics less than 2 months after my release from the psychiatric hospital, though psychiatrists claimed that I was incurably mentally ill.
You say: “To be sent home from hospital with the stern message that you are damaged goods beyond repair and that the rest of your life will be limited and dominated by strong medications was a devastating experience for me.” I can relate so much to it! I felt so depressed after my release from the hospital, I was sometimes having suicidal thoughts. I felt horrible on neuroleptics, as if I were no longer myself, and I had all kinds of “side effects”.
Fortunately I decided to join an online community for people diagnosed with schizophrenia (a community which unfortunately later turned out to be dominated by some very toxic people who were hostile to anyone critical of psychiatry and generally to anyone they saw as “different”) and while reading some comments I found out that it was possible to come off neuroleptics. It was incredibly empowering and liberating! I decided to come off my neuroleptic, though I could not talk about it to anyone, not even to my closest family members. It was definitely one of the best decisions I have taken in my life.
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Nijinsky, I really appreciate your insightful comments. And I fully agree with you on the importance of detachment from the goals and values imposed by mainstream society. I have found a true, deep happiness and peace in a life liberated from such goals.
I am not successful in mainstream terms, I don’t have a “career”, but I am now much happier than when I worked as an academic. I have much more time for thinking and reading, for contemplating nature, for my local community. I am now poor in material terms, but this poverty does not depress me, it makes me feel a deep solidarity with people who are much poorer than me and with other marginalized people.
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Van Scnassin, I do understand the main thrust of Billy’s comment. If Billy had written: “Bill Clinton turned his back on the 800,000 people murdered in Rwanda”, Clinton’s hypocrisy would still be obvious, just like his dismissive attitude towards a genocide taking place in Africa.
I find the words “800,000 blacks murdered in Rwanda” problematic because they reduce the victims to their “race”. Even “Black people” would sound much better than “blacks”. The latter word unfortunately often sounds dismissive and may even sound dehumanizing.
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Anotherone, thank you for your supportive words and yes, we are in good company here! It is unfortunately so true that diagnostic people set up the diagnosed to be exploited, abused and hurt. A woman diagnosed with “schizophrenia” was recently murdered in Britain by a younger female “friend” who wanted her money: http://www.bbc.com/news/uk-england-london-63399511
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Birdsong, thanks a lot and I would add that medical training certainly does not attach enough importance to empathy! Even very callous people can become doctors…
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Anotherone, thanks a lot for your detailed explanations on the US system. I did not realize that it was that toxic!
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Birdsong, thank you so much for your kind and supportive words! Yes, I have already heard about narcissistic abuse and I am going to find some videos about it. The man I have mentioned is certainly very narcissistic…
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Boans, I am so sorry to hear about your being homeless and your painful experiences. I can only say that unfortunately abuse and injustice can go unpunished.
I once had a “friend” who was ruthlessly exploiting my naivety and low self-esteem (damaged by my psychiatric diagnosis and other negative experiences) for several years. By the way, he knew about my diagnosis and I guess that this was one of the reasons why he decided to exploit me; he often accused me of being “paranoid”…
I finally found the strength to end my “friendship” with him. He has never seemed to show any remorse, he has never apologized for anything. I would now be in a much better financial situation if I had not been exploited by him.
For years I kept hoping that he would be punished in some way for the things he had done, but it did not happen. On the contrary, he got married (his third marriage) and seems to be happily married, he has not lost his self-confidence, he looks young for his age, he has many friends etc.
One day I realized that I simply have to accept the fact that life can be very unfair and that this man would probably never even realize that he did something really evil. Yes, evil often goes unpunished and many people actually refuse to admit to themselves that they have done something evil to another person!
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Anotherone, thank you for your explanation. Yes, it may be a US thing… In my country psychiatrists seem to believe that if someone is diagnosed with schizophrenia, there is no need for any other diagnosis.
My brother has been told by psychiatrists that he does not have a mental illness, but only an unspecified personality disorder – the psychiatrists seemed to think that a patient can have either a mental illness, or a personality disorder, but not both at the same time…
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KateL, you said in your earlier comment “The personality disorder-diagnosed patients may have frightened the psychiatrist who thought he or she was dealing with a machine, but the patient insisted on being seen as human…”
I am sure that you did not intend to suggest anything negative about people with other diagnoses. I just think that it is difficult to say why some people get diagnosed with personality disorders and others don’t. There are also clearly differences between countries, e.g. it seems that in my country people diagnosed with schizophrenia usually do not get any other psychiatric diagnoses.
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Steve, I fully agree with you – if we describe psychiatrists as “stigmatized”, the word actually becomes meaningless and psychiatry has not only reinforced the stigma, but also given it a “scientific” veneer!
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I, too, find David’s idea very interesting!
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Steve, I understand why you have this association, but I would say that the psychiatric propaganda has unfortunately hijacked this word. “Stigma” and “stigmatization” are very useful terms, much better than “othering”. Some people are not merely “othered”, but perceived as tainted and reduced to the attribute which “taints” them, e.g. to their diagnosis of “mental illness”.
Erving Goffman (I know that I have mentioned him more than once in this discussion…) coined the sociological concept of stigma and as an academic interested in public health and psychiatric patients Dr. Shields should be familiar with this concept.
Discrimination is something different in nature from stigmatization, though stigmatization always leads to discrimination. Someone or some institution/organization can discriminate e.g. against women, against people over 60 or against single people, but only some groups are seen as “tainted”.
One of the crucial things about stigma is that people often desperately try to hide (if possible) attributes/experiences which lead to stigma. The fact that few people are ready to disclose their diagnosis of a “serious mental illness” or the fact that they have been to a mental hospital proves that the “mentally ill” are still a deeply stigmatized group, even one of the most stigmatized ones.
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Boans, if Dr. Shields had asked: “Are psychiatric patients treated as people?”, I would have no problem with her question. But she has implied that the right of psychiatric patients to be treated like human beings is something “healthy” people can debate… I find it utterly ridiculous.
It is unfortunately true that many people have far more compassion and kindness for dogs or cats than for the “mentally ill” and generally for other human beings. It is one of the paradoxes of our world.
When I was locked on a psychiatric ward, police simply hang up on me when I called them from the public phone on the ward (my mobile phone had been stolen by some other patients). I was having delusions (e.g. on one day I became convinced that I was going to be gang-raped and murdered), but I could see that police did not even want to talk to patients from a mental hospital.
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Steve, thank you for mentioning David Healy’s case. However, the “punishments” did not prevent him from speaking the truth. By the way, I have recently come across his very interesting article on “pharmacological abuse” http://davidhealy.org/wp-content/uploads/2012/06/Pharmacological-Abuse.pdf
I would add that academics who want to defend truth and justice should be ready to take risks. If people are determined to avoid saying or doing something which might displease some powerful lobby or someone who might harm their career, they are not able to defend truth and justice.
If a person is determined to be “nice” to powerful people and to avoid saying anything which might “offend” or “trigger” them, s/he will never find the courage to question the status quo.
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Steve, maybe this is what Dr. Shields meant, but I have doubts about it. I personally suspect that she meant negative attitudes towards psychiatric patients – the fear, discomfort and “othering” she mentions in the earlier part of the interview. By the way, I am wondering what makes her say “I hate to use the word stigma”…
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KateL, unfortunately you seem to suggest in this way that patients who are not diagnosed with personality disorders do not insist on being seen as human and somehow “allow” the psychiatrist to treat them like malfunctioning machines. This is not true.
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Birdsong, but have you heard about a case of a professor terminated for criticizing the mainstream views on psychiatry? I agree with you that academic freedom has limits, but I have not noticed any attempts to “cancel” academics who question biopsychiatry or the idea of forcible drugging.
And as you pointed out in another comment, we simply don’t know to what extent Dr. Shields is critical of psychiatry. There are many people who believe that they support the human rights of psychiatric patients, but who do not see involuntary psychiatric treatment and forcible drugging as a violation of human rights.
It is striking that Dr. Shields says that the approach of people frustrated by the fact that “they canât force their loved one into treatment” “can be valid”. She seems not to realize that people can try to force their partners or family members into treatment not because they care about them, but because they want to control them, punish them or even get rid of them.
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Gloria, I don’t think that Charlotte was trying to lose weight, she does not mention it in her story.
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Gina, I have seen articles based on much more recent research, but I don’t remember any written from a radical perspective.
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Birdsong, you have put it so well in the final sentence of your comment: “But whether or not Dr. Shields holds radical ideas and is willing and able to implement them remains to be seen.” I could not agree more with you!
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KateL, I agree with you that many people are not interested in talking to survivors, especially to survivors who disagree with them. I am not jumping to any assumptions, but I, too, find it strange that some authors choose not to engage with the comments on the MIA website.
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Steve, I am glad that you have mentioned the apologetic tone of her critique. I am not sure if there are really psychiatrists who are wondering if psychiatric patients should be treated like human beings. I often read articles from psychiatric websites and I don’t have this impression.
I personally suspect that Dr. Shields said it without realizing that her words would sound shocking to many people.
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You are making some excellent points, Steve!
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Birdsong, I continue to find this question very strange. As I said in one of my earlier comments, can one imagine someone asking such a question about any other group?
Yes, doctors may overlook the person in front of them, but she is asking “Should we even treat psychiatric patients as people?”, not “Should we even treat patients as people?” This difference is very important.
I agree with you that psychiatrists often focus on the “illness” and not on the person, but the question “Should we even treat psychiatric patients as people?” seems to be implying that the right of psychiatric patients to be treated like human beings is somehow a debatable and controversial issue, as if we were talking e.g. about murderers or paedophiles…
Let’s not forget about something Dr. Shields says a little later: “I would love for us to get to the point where we agree these are humans…” – she means psychiatric patients.
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Birdsong, I, too, find it disturbing and depressing, though unfortunately unsurprising. Like you, I simply don’t know whose side she is really on.
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Birdsong, one can tread carefully without portraying psychiatrists as a stigmatized group with good intentions and without calling any psychiatrists “amazing”.
You say that Dr. Shields “just got her foot in the door, which is no small feat”, but she is a professor on a tenure track, not an adjunct or a PhD student. She is not someone in a precarious position, someone who might lose her job if she says or writes something “too radical”.
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Birdsong, you say “interviews have time constraints.” But this interview was long, they were talking for an hour! And I am not criticizing her merely for not addressing some issues, I am very disappointed by the things she has been saying and her general tone. Maybe she is more radical than the interview suggests, but I am not going to assume that she is.
I, too, believe in giving people a chance and this is why I patiently listened to the whole interview, though I did not find it interesting.
You ask: “And what else do you suggest when, âMost academics donât challenge the powers that beâ and âonly some academics are independent thinkersâ?”
I think that people can learn to think outside the box and to look critically at the mainstream views – to realize that these mainstream views can be questioned. I think, too, that people who do research on psychiatric patients should listen to the voices of psychiatric survivors who are very critical of the system.
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Anotherone, you are making an excellent point. Professors like Dr. Shields are paid for their work and reap other benefits. In a way it is paradoxical that they often do not feel ready to engage with critical voices coming from the very group they are doing research on.
I know that one needs courage to acknowledge critical comments, but this is a kind of courage academics should cultivate.
I also fully agree with you that no one should expect an ‘A for effort’. I do hope that Dr. Shields is going to read at least some of these comments.
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Steve, thanks a lot for your clarification! However, I think that it would be good for Dr. Shields to read at least some of the comments instead of assuming that everyone likes this interview…
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followtherabbithole followtherabbithole, thanks a lot! I am very glad that you, too, find this interview disappointing.
I agree with you that we are taught lies and I have looked at some search results on Big Pharma in the search engine you recommend.
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Birdsong, let me emphasize that I have not been criticizing your approach in any of my comments.
You say: “a public interview may not be the wisest place for her to express her goals more specifically at this time.” You may be right, but I was really expecting much more from this interview.
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Birdsong, but why do we actually have to meet psychiatrists where they’re at? Please compare it to research on police violence – are researchers trying to talk and write in a “nice” way about police officers?
I am not saying that Dr. Shields should attack psychiatrists, but in my opinion she portrays them in a much too positive light.
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Birdsong, you say “She has every right and reason to be afraid” and “if she does take on a full-frontal attack too soon, sheâll be decidedly outgunned”.
I don’t think that we can assume without any evidence that Dr. Shields is radically opposed to the psychiatric system. In the interview she implies that psychiatrists have good intentions and she claims that she has met some “amazing” ones. She talks in positive terms about people who want to force their family members into “treatment”. She claims that the frontline staff are victims etc.
The fact that an academic chooses to do research on psychiatric patients does not necessarily mean that this academic disagrees with the mainstream views on “mental health”, psychiatric drugs etc.
As I said earlier, there are academics who are very critical of psychiatry. I disagree with your opinion that if Dr. Shields were more critical of psychiatry, she would lose her position – I don’t know any cases of professors fired for criticizing psychiatry. And if she is indeed afraid of losing her position, this means that she is going to protect her academic status at the expense of truth…
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Birdsong, I have mentioned research on the negative impact of neuroleptics or on the links between traumatic experiences and “voices” as some examples of genuinely helpful academic research. In fact, it is not true that until now academia has been ignoring the experiences of psychiatric patients. Some academics have been doing crucially important research.
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Birdsong, you say “it sounds like Dr. Shields has the right ideas and framework to make positive changes” and that she has the guts to take on “inpatient-coercive psychiatry”.
I disagree with you. The description of her research at the beginning of the interview has little in common with the contents of the interview. As I said earlier, the only clear idea I see in the interview is the idea of “patient experience measurement”. As to “power imbalances”, she is basically portraying “frontline staff” as “victims” and psychiatrists as a “stigmatized group”.
Dr. Shields does not question the idea of involuntary treatment and forcible drugging in this interview. As I said earlier, she talks in very general and vague terms. She does not say anything radical, unless we assume that her hope that “we” are going to agree that psychiatric patients are humans is radical…
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KateL, yes, I think that Dr. Shields was referring to society in general, though I agree with you that it is not clear from the quote.
I agree with you that is a good thing that someone with lived experience is working in the system. Unfortunately people with lived experience are very often able to work in the system only if they do not challenge it in a significant way and agree with its basic tenets. And as I pointed out in an earlier comment, I think that Dr. Shields would be much more critical of psychiatry if she had been herself diagnosed with a “serious mental illness”…
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Birdsong, KateL is right – I was referring to Dr. Shields, not to you. I appreciate all your comments in this discussion.
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Boans, it is so sad to read about your experiences with the psychiatric system. I totally agree with you – the psychiatric system can get its “prisoners” for free. And the sicker psychiatric patients are, the better it is for the system.
Psychiatrists would love to keep me on neuroleptics for life only because I had one psychotic episode more than 10 years ago. They refuse to see that I am not mentally ill, that I don’t need any “medication”. In their opinion I have an incurable illness, though I am a happy and peaceful person.
I refuse to listen to psychiatrists, but many people take them very seriously. My case proves so well that most psychiatrists are doing something very evil, even if they have good intentions…
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Birdsong, thank you so much for your kind words! I agree with you on academics and other professionals. As you said, many (if not most) of them seem to feel threatened by critical comments.
I agree with you that academia has a problem with critical thinking. At the same time I think that the situation was better in the past, it seems that there were more radical academics ready to challenge mainstream views.
I feel that unfortunately academia has now become so competitive that many academics are very afraid of doing anything risky for their careers. I also have the feeling that academia rewards academics who are not rebellious, who “toe the line” even if they claim that they are on the side of marginalized people…
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Birdsong, I hope so, too, but I find it sad that she does not seem interested in critical comments coming from psychiatric survivors!
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Gina, there are researchers who have studied psychiatric detention, including the sociologist Erving Goffman with his seminal book “Asylums” and much more recently Jonathan Metzl with his book “The Protest Psychosis: How Schizophrenia Became a Black Disease”. Surprisingly, Dr. Shields does not mention involuntary psychiatric detention in this interview.
She even speaks in a positive terms about people who “can’t force their loved one into treatment” (“Some people in some families do struggle to access the care they need, and they do perceive their biggest barrier being the fact that they canât force their loved one into treatment, and that can be valid…”).
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Anotherone, unfortunately many people do not acknowledge critical comments, unless they come from someone well-known. The voices of psychiatric survivors are very often ignored if they criticize something an academic or a “professional” has said. We are usually not taken seriously.
I know that people can be genuinely too busy to reply to online comments or find them too upsetting, but people should not ignore criticism and pretend that everyone is enthusiastic.
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I don’t personally expect any reply from Dr. Shields. However, I feel that you should not imply that we are somehow pestering her and that we should “give her a break”.
We have the right to express our opinion. It does not mean that we are pestering her. Let me add that Dr. Shields claims on her Twitter @MorganCShields that she has been “overwhelmed by the positive response” to this interview. This makes me guess that she has not read the comments here, or that she finds them irrelevant, or that she wants to pretend that everyone is enthusiastic about this interview.
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Birdsong, is she really taking on coercive psychiatry? Is she actually saying anything which might shock or anger psychiatrists? In my opinion she is doing her best to reassure them – according to her they have good intentions and are “stigmatized”.
Dr. Shields seems to be really afraid of being labelled as “anti-psychiatrist” and of getting into conflict with other people, including psychiatrists. Of course it can be related to her being a young academic and to her being a woman – women are still expected to be “nice” and non-confrontational. But it is impossible to take on oppressive systems if one is determined to be “nice” and to avoid upsetting people who oppress others…
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Birdsong, you say that the psych world is not ready for a radical approach, but I don’t think that researchers should adapt their approach to the expectations of the psych world. Why should psychiatrists be placated and reassured?
I guess that most researchers either personally embrace the mainstream views on “mental health”, or are convinced that questioning these views would be too risky for their careers.
Of course another big problem is that many researchers apply for grants in order to finance their research – Dr. Shields mentions a NIH grant – and institutions which award grants are not interested in research which challenges the prevailing dogmas.
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Birdsong, researchers can do something very important – as an example, they can publish research which shows e.g. the negative impact of neuroleptics or of the ECT on the brain, research on the links between traumatic experiences and “voices” etc.
Unfortunately Dr. Shields speaks in very vague and general terms throughout the whole interview. The only clear idea she mentions is “patient experience measurement” and she calls it “the first step”. I have nothing against this idea, though I think that the words “patient experience measurement” are obfuscating the reality of mental health hospitals and implying that psychiatric patients are just as free as other patients.
You say that if she “can accomplish fifty percent of her objectives, things will have come a long way.” But what are actually her objectives apart from the idea of “patient experience measurement”? She spends much more time talking about the practicalities of her research than about her goals and ideas.
I think that there is no reason to assume that we should be happy only because an academic has decided to do research on the experiences of patients in mental hospitals. Such research can be conducted from various perspectives, including from perspectives which obfuscate the nature of the system and reinforce biopsychiatry instead of challenging it.
As an example, another MIA article http://www.madinamerica.com/2022/11/racism-coercion-first-episode-psychosis-treatment-fuels-loneliness-mistrust/ mentions a study whose authors make it clear that they believe that people who have experienced a psychotic episode should be on neuroleptics http://doi.org/10.1177/00957984221135377 .
The fact that Dr. Shields has “lived experience” unfortunately does not necessarily mean that she is (or is going to be) ready to question the dogmas of biopsychiatry. I am wondering what she actually thinks about psychiatric diagnoses, about psychiatric drugs, about forcible drugging or about ECT. Unfortunately she talks at length and in great detail about things which are not really important.
And I feel that unfortunately some of us still have too much respect for academics and put too much hope in their research… Most academics don’t challenge “the powers that be”, only some academics are independent and courageous thinkers.
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Boans, I am very sorry to hear about your experiences.
I think that one of the differences between slavery and the psychiatric system is that in many cases psychiatrists and other “mental health” staff do not have any reason to care about the physical state of patients.
Even if a patient dies (like the overmedicated patients mentioned by Dr. Shields), there are plenty of others. And even if a patient becomes severely physically disabled as a consequence of his “treatment”, he is highly unlikely to stop being a psychiatric patient.
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Birdsong, she certainly deserves respect, especially for being so open about her own experiences, but I think that academics can and should be much more critical towards psychiatry and the psychiatric system. I know that it is risky, I know that it demands courage, but it is not impossible. John Read, Suman Fernando or Joanna Moncrieff are some of the best known radical critics of psychiatry inside the academia.
As long as researchers focus on the (genuinely or supposedly) good intentions of psychiatrists and nurses or of people who want to force their “loved ones” into “treatment”, they will never understand the nature of the system…
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Birdsong, great to hear that you agree with me and I, too, hope that Dr. Shields is going to read our comments!
I fully agree with you – we need all the help we can get. At the same time, I find it worrying that in spite of being quite mild in her critique of the psychiatric system she is so careful to avoid the “anti-psychiatry” label. As long as academics are blocked by the fear of being labelled as “anti-psychiatrists”, they will be unable to develop a radical approach.
The risk of getting “wined and dined” by psychiatrists is unfortunately very real. Of course I am also aware that in today’s academia it is dangerous to question the mainstream views, especially if one is a young academic.
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Steve and Birdsong, I really hope that the situation is not as bad as she is implying. Of course I agree with both you that Dr. Shields does not share this attitude. But when Birdsong says: “you have to start somewhere”, aren’t we forgetting about the earlier academic research critical of psychiatry?
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KateL, I am wondering if she means only professionals or actually the society in general…
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A correction: it seems that Dr. Shields does not include psychiatrists among the “frontline staff” when she says: “I have found that frontline staff at psych facilities are, in general, enthusiastic even about my research so long as I make it very clear that Iâm not blaming them and that I think they also are victims of a very toxic system.”
However, even nurses and other workers at psychiatric facilities should not be portrayed as “victims of a very toxic system”. They have power over patients and can be very abusive, as Dr. Shields has found out herself. I completely disagree with her when she says: “Itâs not that one individual is evil at all.” Individuals can be evil. There are evil individuals among the frontline staff at psychiatric facilities.
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Dr. Shields asks: “Should we even treat psychiatric patients as people? Thatâs the debate that Iâve been hearing, and thatâs unfortunate. I would love for us to get to the point where we agree these are humans…”
This is simply unbelievable – she actually claims that even the very humanity of psychiatric patients is a debatable issue. That there is no general consensus that psychiatric patients are humans and deserve to be treated like other human beings. Could one imagine someone talking in this way about any other group, e.g. Black people? I am surprised that other people have not commented on it.
As someone who has been diagnosed with “schizophrenia” AFTER getting a PhD and who now lives in poverty I also find it very ironic that Dr. Shields believes that “just having a PhD makes someone incredibly privileged”. A PhD is not enough to protect a person from unemployment, poverty and social isolation.
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It is admirable that Dr. Shields speaks so openly about her painful personal experiences. Unfortunately she minimizes the harms done to patients in mental hospitals and – astonishingly – portrays psychiatrists and nurses as “victims of a very toxic system”.
Dr. Shields says: “I donât necessarily think that any single psychiatrist or necessarily an association of psychiatrists like that some patients get hurt in psych facilities.” Not only some patients get hurt – many patients get hurt, especially the involuntarily committed ones. Interestingly, Dr. Shields does not mention the problem of forcible drugging and the harmful effects of psychiatric drugs.
What makes her think that there are no psychiatrists who like hurting people or who simply don’t see their patients as equal human beings? Even if most psychiatrists were genuinely well-intentioned, most of them cause harm to their patients. Dr. Shields mentions people who have died while being overmedicated – the psychiatrists in these hospitals were clearly either very callous, or very incompetent. In any case their decisions led to people’s deaths.
The idea that “frontline staff” are victims and should not be blamed is frankly ludicrous. If everyone is a victim, we erase the existing imbalance of power and the personal responsibility of people who harm and oppress others. Psychiatrists and nurses have a great power over their patients, including the power to label people as incurably mentally ill. They are not oppressed – they are oppressing patients (even if they are doing it with a kind smile). They are responsible for the harm they cause.
Dr. Shields claims that she has met “amazing” psychiatrists: if these psychiatrists support forcible drugging and life-long neuroleptic treatment, they oppress their patients and therefore cannot be “amazing”.
Dr. Shields also portrays psychiatrists as a “stigmatized” profession. If both psychiatrists and their patients are described as “stigmatized”, this word becomes completely meaningless. Psychiatrists are not despised and feared, they do not live in poverty, they are not ostracized and isolated. They willingly agree to be psychiatrists and are paid for their work. They are not ashamed of their job and do not feel forced to hide it from others.
In his seminal book “Stigma” Erving Goffman defines stigma as an attribute which is “deeply discrediting”, which reduces a person in our mind “from a whole and usual person to a tainted, discounted one”. Psychiatrists are powerful professionals who have their own societies and academic journals and are widely seen as experts. Their views on mental health continue to be embraced by mainstream society. How can one compare them to the “mentally ill” and especially the “schizophrenics”?
I am very disappointed by this interview. I strongly suspect that if Dr. Shields had been herself diagnosed with a “serious mental illness”, she would have a much more critical approach towards the psychiatric system and towards the “frontline staff”. I also feel that most academics see the psychiatric system in a much too positive light because they usually find it much easier to relate to psychiatrists (successful professionals with a similar social status) than to marginalized people and because they tend to embrace the mainstream views on mental health and on psychiatric treatment.
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Another link to Hilary Mantel’s essay (the one posted in the article does not seem to be currently working): http://www.thefreelibrary.com/Sanity%2C+madness+and+the+family-a0407528549
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Anotherone, thanks a lot for explaining your approach. Like you, I am wondering if such long reports on academic articles are actually a good idea. Maybe it would be much better to post a short summary of an academic article and a link to its PDF version in case it is available.
Just like you, I believe in epistemic justice and I fully agree with you that conversations on “mental health” tend to exclude people like us. As you said, there are very few websites like this one, websites where people who are critical of psychiatry and psychology are not being mocked and silenced.
I, too, feel that unfortunately some of the authors on the MIA website are not critical enough towards the mental health industry and towards academic articles. As it seems, one usually needs to directly experience the harms, injustices and absurdity of the mental health system and other systems which supposedly protect vulnerable people in order to have a sufficient level of mistrust towards the mainstream perspective on “mental health”…
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Kevin, you have made an excellent point. Capitalism in the USA and in most of the world is very different from capitalism in some Western countries with free healthcare systems, well-developed welfare systems etc. Some capitalist countries do a lot to help vulnerable people.
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Thank you, anotherone, I understand what you mean. I have also noticed the illustration which you (and KateL) had criticized in your comments. To be fair to Mr Luiggi -HernĂĄndez, he was only reporting on a study, not expressing his own views on people diagnosed with BPD.
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Billy Williams III, you say “Bill Clinton who at heart was much more of a socialist than capitalist, turned his back on the 800,000 blacks murdered in Rwanda as he was president.” Why say “blacks” if one can simply say “people”? The Tutsis do not see themselves as “blacks”.
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anotherone, you mention an article of “pro-misogyny pontificating” by JosĂŠ G. Luiggi -HernĂĄndez. Which article you mean? Is it still available on the MIA website?
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Johanna, here is a link to a copy of the article which is not behind a paywall: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC9574530/
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KateL, it is disgusting that someone has dismissed your voice and experiences in this way and even claimed that you are “gaming the system”! Some very mean-spirited people leave online comments under the cover of anonymity…
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Anotherone, thank you. I really appreciate the comments you have left in this discussion, including the one where you mention the despicable behaviour of this urgent care doctor.
As to “survivor spaces that prioritize the least affected”, I was perplexed when I found out that even unemployed people have to pay 50$ (or 25$ in the case of low-income countries, mainly African countries) to join the International Society for Psychological and Social Approaches to Psychosis. Membership in such organizations should be free for unemployed and other poor people with experience of psychosis.
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KateL, I agree with you and I am glad that you mention it – I think that at least some of the homeless people were treated for mental illness and have experienced brain damage because of psychiatric treatment. I believe that the cognitive dysfunctions of many patients described in psychiatric textbooks and articles are usually or at least very frequently an effect of psychiatric medications and ECT.
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Birdsong, good to hear that you have similar thoughts on this subject. I used the word “interesting”, but I could have used the words you used. And I, too, think that Charlotte, like so many other people, may be unconsciously or consciously biased against psychiatric survivors who are not successful middle-class people.
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I am wondering why Charlotte seems to be implying that all psychiatric survivors are “service-users”. She seems to treat these two terms as interchangeable and she does not seem to realize that there are psychiatric survivors who are not involved with the psychiatric system, or who are involved with it only out of sheer economic necessity.
Charlotte reassures her readers that those who criticize psychiatry don’t think that psychiatric drugs are “evil”. Well, e.g. neuroleptics are literally toxic to the brain and many critics of psychiatry openly talk about it. And one thing is obvious: forced psychiatric drugging is evil, though plenty of people continue to find it acceptable.
I also find it interesting that Charlotte has talked only to “clinicians, academics, writers, scientists, and journalists” – to people who have successful careers and who are probably middle-class.
People harmed by psychiatry are very often poor. People who have experienced forcible psychiatric treatment are much more likely to be poor than affluent. Successful middle-class people are rather unlikely to be forced to stay in a public psychiatric ward with complete strangers while in the midst of acute distress. The most oppressed people know the most about the damage and humiliation caused by psychiatry.
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I also find Stevie’s approach quite weird. As Steve said, psychiatrists are the ones who are in charge. They are even able to take away people’s freedom and force them to take psychiatric drugs. I feel that psychiatric survivors are much too often expected to be “nice” towards psychiatrists and other mental health professionals, even if there is a staggering power imbalance between the survivor and the professional.
There is no such thing as being “too critical” towards psychiatrists. As Steve pointed out, many (most?) psychiatrists don’t show enough empathy and respect to their patients.
Many psychiatrists don’t seem to care about the impact of psychiatric “treatment” on people’s lives and health. I am not saying that all psychiatrists are callous, but even those who have good intentions can ruin people’s lives.
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I totally agree with you – the internet can be incredibly helpful and it is very true “that if you have enough pain in your life, you will look anywhere for the truth, even if this truth goes against what the medical system is telling you.” I felt really bad when I was taking a neuroleptic. Fortunately I registered on a forum for people diagnosed with schizophrenia and I came across a few comments by people who were saying that it was possible to come off neuroleptics.
I stopped taking them and it has been one of the best decisions in my life, maybe even the best one. I have never had a relapse of psychosis.
I personally very often feel that the system does not care about out well-being. In my country it is very difficult to get any financial support or psychotherapy even if one is a person with experience of psychosis. The only thing one can easily get are neuroleptics…
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Sera, I don’t think that the difference between drugs prescribed by doctors and other drugs should be minimized. Many (if not most) people start taking psychiatric drugs because they have been told by authority figures that they need them. People start using e.g. street drugs for other reasons.
Moreover, we should ask themselves: what does it even mean that “around 20% of people will do best staying on psychotropics longer term”? “Best” in what sense? Does it mean that they will actually feel better and be happier if they stay on psychotropics longer term? And how do these researchers know it?
Let’s not forget either about the impact of psychiatric drugs on people’s physical health. People diagnosed with schizophrenia have a much shorter life expectancy than the rest of the population largely because of the effects of neuroleptics.
Of course I respect many people’s decision to take psychiatric drugs, but let’s not forget that this decision is influenced by the mainstream discourse on mental health and illness and by the opinion of psychiatrists who are very often authority figures for their patients.
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cynical.nihilist, many thanks for your very interesting and thought-provoking comment. Your description of the behaviour of mental health professionals and family members at that event sounds so convincing (I had similar feelings in an online group dominated by the voices of mental health professionals and family members).
I totally agree with you on the role of environmental and lifestyle factors and the example of diabetes is excellent. The role of pharmacotherapy keeps being hugely overestimated at the expense of other treatment approaches and methods.
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Steve, I fully agree with what you are saying. I would say that the assumption comes from brainwashing by the mainstream media, books and “experts”, as well as from the belief that pharmacotherapy is the best way to deal with all kinds of (real or imaginary) diseases.
Even in the case of very real physical diseases we can often observe a very naive attitude towards pharmacotherapy. E.g. many people with metastatic cancers agree to chemotherapy, including chemotherapy with the use of “experimental” drugs, in the hope that it will save their lives and despite the frequently horrible side effects. There are cases of doctors who prescribe unnecessary chemotherapy to dying patients, e.g. the British cancer specialist Justin Stebbing who was even suspended for 9 months from the UK medical register.
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Ryan, let me just add that when people say “think how much worse theyâll be OFF medications!â, I feel that one of the reasons is that many people assume that having any hallucinations or delusions or any eccentric behaviour is completely unacceptable. Such people seem to think that as long as psychiatric drugs stop or at least reduce “symptoms”, the person should keep using them, no matter how horrible the effects of the drugs are.
Another misconception is that people who have hallucinations and/or delusions are always a threat to others or to themselves. This is a myth which causes incredible harm to many people all over the world.
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Dear Ryan, thank you so much for all your kind words and for sharing more about your experiences!
Those who claim that people would be much worse off psychiatric medications are clearly brainwashed and misinterpreting the effects of these drugs as symptoms of a mental illness.
It is so depressing, though unsurprising to hear that your psychiatrists did not care about the impact of all these psychiatric drugs on your health (both physical and mental). I can’t understand why they put you on so many drugs, unless profit was their main motive… So sad to hear what happened to your mother’s best friend’s daughter – the risk of tardive dyskinesia was one of the main reasons why I decided to come off my neuroleptic.
The neuroleptic was Abilify in my case and fortunately I found it very easy to stop using it. I guess that it would have been much more difficult to come off it if I had been using it for many months or even years.
I fully understand what you mean by saying that the impact of psychiatric “treatment” ruined your education. You may try reading the book “Call Me Crazy: Stories from the Mad Movement” by Irit Shimrat – I have only recently found out about this book and I am sure that you would find it interesting: http://eservices.apps01.yorku.ca/hist_madness/wp-content/uploads/2017/06/Shimrat_Irit_Call_Me_Crazy_1997.pdf
Great to hear that your parents have been so supportive and I fully understand why you find your dad’s gift so deeply moving.. Please don’t feel bad because of what your family has experienced. When I had my psychotic episode, it was also very stressful for my family, but the crucial thing is that I have recovered from the experience and my relationship with my closest family members has even improved since that time (e.g. I have become much more open with my mum).
Just like you, I can say that my family has supported my recovery more than anyone else – in fact, only my family supported me when I was having my psychotic episode and after my release from the mental hospital. I did not have any friends at that time (my only friendship broke down when I became severely psychotic – of course this was incredibly painful).
The only people who visited me in the hospital were my parents, my brother and my aunt. My mum visited me every day. I was very lucky because most other patients on my ward rarely, if ever, got any visits.
At the same time, I am very happy that I was able to live alone when I decided to come off my neuroleptic. In fact, at that time my mum thought that it would be dangerous for me to stop using it, though she could see all the side effects of the drug. Thanks to my situation I was able to come off Abilify without having to inform anyone about my decision. Let me add that no one in my family has ever criticized this decision and I deeply appreciate it.
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Ryan, many thanks for sharing your incredibly uplifting and heart-warming story. I am so impressed by your inner strength, courage and kindness, as well as by your loving and generous attitude towards your family members. So many people resent their parents, but you write so beautifully about your dad: “I have found a way to accept my dadâs faults for what they are and have learned to love him for who he is. I no longer need that therapy that I once thought I needed.”
I fortunately experienced psychiatric drugs only as an adult, because of a psychotic episode in 2012, and coming off my neuroleptic was quite easy because I had been taking it for less than 3 months. While reading your story I realized how lucky I am… I wish all the best to you, your dad and the rest of your family.
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registeredforthissite, you say that we are “failures” because we “haven’t been able to find a solution for people who suffer from problems” and because a psychiatrist or psychologist has “more power and value than us”.
I find this extremely unfair. I believe that people who suffer don’t have to take psychiatric drugs and this is what I have always said to other people. I was often attacked or simply ignored.
Let me add that I personally NEVER saw psychiatrists as gods. I never wanted any psychiatric “treatment”, I was involuntarily committed and forcibly drugged.
Why do you think that a psychiatric survivor who is unable to convince other people to stop believing in psychiatry should feel like a failure?
People who have a lot of power in a cruel, inhuman and grotesque system are not in any sense better than people who have much less power in this system. I am also wondering what makes you say that psychiatrists or psychologists have more “value” than psychiatric survivors…
Psychiatrists and psychologists are usually much more respected than psychiatric survivors because of the nature of the world we live in, a world which stigmatizes and humiliates psychiatric survivors and which highly values people with medical degrees and well-paid jobs.
Why should we feel like failures only because we are unable to change the minds of millions of brainwashed people who believe in psychiatry? We can change our own lives and – if we are lucky – the lives of some other people.
Every person who bravely resists a cruel system is not a “failure”, no matter how poor and isolated this person is.
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Steve, this is very true. Many distressed people focus on their own situation, on saving themselves and only themselves. Of course this is unsurprising…
Sadly, many people never stop saying that they are unlike the “really mentally ill” and cutting themselves off from them. As you said, they don’t see that the real problem is the labeling process.
It is not at all easy to create a sense of solidarity between psychiatric survivors, especially between those who are privileged in some sense (e.g. socioeconomically) and the others. People diagnosed with serious mental illnesses are disproportionately poor and I am sure that in the case of middle-class and upper-middle class people the desire to cut oneself off from the “really mentally ill” is partially linked to prejudice towards the poor.
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Joshua, a mental health system does not have to mean forced drugging, stigmatizing diagnoses etc.
As I have been saying in my earlier comments, there are many people who are not lucky enough to have a well-functioning support network. There are many people who are isolated, who don’t have real friends or who find it difficult to talk about their problems to their friends or family members.
It would be wonderful to live in a world where everyone going through a mental health crisis has loyal friends and comrades who can always offer him/her support. Unfortunately we don’t live in such a world… This is one of the main reasons why mental health issues are now so frequent.
When my brother suddenly started having suicidal thoughts, me and my other family members did not even know about it. In fact, pople can hide their most painful problems from those who can offer them support.
There are also situations when talking to someone friendly is not enough for a person going through a serious mental health crisis – a severe psychotic episode is a very good example of such a situation.
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Joshua, regarding what you said about Ukrainians fighting for their lives and country: I am absolutely not saying that people can’t cope with their problems and emotions without a therapist or a support line!
I don’t personally have and have never had a therapist. I have coped with my problems and emotions in other ways. To be honest, I think that psychotherapy is hugely overrated and that many paid therapists cleverly exploit their clients and deliberately try to make the clients emotionally dependent on them.
However, people can go through situations with which they are unable to cope. Let’s not forget that many people do take their own lives… I do see it as a tragedy, unlike some psychiatric survivors.
Ukrainians who fight together for their country are in a completely different situation than people going through a mental health crisis. An individual going through a mental health crisis often feels painfully, terrifyingly alone and rejected by other people. When people are together experiencing the same situation at the same time, they can and often do support each other.
Finally, when a person is severely psychotic, simply talking to friendly people is not enough. I did talk to a few friendly people during my psychotic episode, but my hallucinations and delusions did not stop.
A severe psychotic episode is a radically different experience from e.g. a bout of depression. The mind functions in a different way during such episodes – e.g. harmless things may seem terrifying, a person may strongly believe the most horrifying things without even a shred of evidence etc. This type of psychosis is a very difficult experience and may even be traumatizing.
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Joshua, yes, I know that there are such toxic family members – this is very sad.
You say that people should talk to “comrades” who are fighting for justice, but unfortunately only some people are lucky enough to have such “comrades” when they are going through a mental health crisis. Groups and networks of people critical of psychiatry exist only in some countries.
I did not know anyone with similar experiences when I was going through a psychotic episode and after my release from the mental hospital. I later joined an online community for people diagnosed with “schizophrenia”, but virtually everyone in this community believed that people with this diagnosis should be on neuroleptics. I was actually attacked by many members of this community because of my own approach…
Another problem is that only some psychiatric survivors are “comrades” able and ready to offer friendship and support to others. Today’s societies encourage people to see themselves as isolated individuals and unfortunately many survivors are not immune to this trend. Some currents of pop psychology encourage people to fully focus on themselves, their own emotions and needs while completely ignoring the emotions, needs and problems of others.
I have often noticed that psychiatric survivors can be very self-centered, convinced that their personal stories are completely unique and uninterested in other people’s lives and problems. In some cases I have seen a pattern where a person takes it for granted that as a psychiatric survivor s/he deserves others’ attention, compassion, time and energy, but is too self-centered to really notice other survivors. Such people can even get very callous and hostile towards other survivors – they clearly don’t see them as comrades.
There are also survivors who actually look down on people they see as “really” mentally ill. I remember a very ironic situation: when I said to a person that I had experienced hallucinations and delusions, she replied something condescending, implying that unlike her I was “really” mentally ill. The irony of the situation is that this person was the one who kept talking about how distressed and miserable she felt and who expected compassion from others…
It was obvious to me that this survivor had internalized the belief that anyone who has ever experienced hallucinations and delusions is mentally ill and that there is something shameful about being mentally ill. Yes, unfortunately many survivors do internalize the beliefs of the mainstream society on “mental illness”!
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Phil, this is so depressing and unfortunately you are so right: many rights exist only on paper!
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Joshua, I do like the idea of a Universal Basic Income. However, it is obvious that there are many people who don’t need such a guaranteed income. People who have well-paid jobs, people who own houses/apartments they can rent etc. don’t need such an income, unlike the poor.
I agree with you that people should develop their own emotional reserves, but it is difficult for many people. You say: “If someone feels that they need to talk about something or need a safe place to chill out okay. But that is NOT the mental health system.”
But unfortunately it can be very difficult or even impossible to find such a (relatively) safe place in our societies… Even if a person has loving family members, they are not always able to cope with the situation, especially if the person does not trust them.
A family member can’t stay awake for 24 hours in order to protect someone from a suicide attempt; and he or she is not always able to fully focus on the person who needs help.
As to finding someone to talk to, again it is not always easy. There are people who are isolated; there are people who don’t feel able to talk openly about their problems to family or friends.
Family members or friends can also give very bad advice to those who are suffering. Finally, they are often too busy with their own lives… I was able to help my brother during his crisis (during his stay in the mental hospital and after his release) only because I don’t have a job.
For all these reasons I don’t think that mainstream mental health institutions and professionals are completely unnecessary. In some cases they can literally save someone’s life…
Of course I agree with you that psychiatric survivors should develop their own institutions, but there are many obstacles, including the lack of funding and all kinds of internal disagreements.
I, too, wish you the best!
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I agree with both of you, it’s a Catch 22!
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Joshua, thank you for your kind words, I really appreciate them! I agree with you – a psychiatric patient has less rights than a criminal suspect, though the situation can be better or worse depending on the state or country.
I fully agree with you that the earlier one cuts them off, the better! This is what I have done myself. I am now trying to get a disability pension because I don’t have any other form of regular income, but I will never agree to use psychiatric drugs.
What you say about the CA Governor is terrifying, just like any other attempts to force the “mentally ill” to take psychiatric drugs…
I think that there is some good in the mental health system – as an example, people may need a relatively safe place when they are having suicidal thoughts or when they are severely psychotic. Sometimes a psychiatric ward becomes such a place… My brother spent some time on a psychiatric ward because of suicidal thoughts. He did not have to take any drugs and was not diagnosed with a mental illness.
I definitely agree with you that there are obvious links between eugenics, including Nazi eugenics, and today’s mainstream attitudes towards the “mentally ill”, as well as people with intellectual disabilities.
I like the way you describe the current situation: “So everyone is supposed to self-actualizing and getting on in the world. If they are not, then they need to submit to their crisis line counselor, their social worker, their therapist, or their minister. And if that is not enough, then there are drugs, and then things like ECT, TMS and Lobotomy.”
I would add that in some countries like mine the “mentally ill” are expected to submit to psychiatrists, but are not protected from extreme poverty and hunger even if they do submit to them. The system does not care about them and its callousness is horrifying.
As the Polish scholar Stanislaw Kowalik rightly pointed out, the fact that vulnerable people find it increasingly difficult to obtain any help from the authorities actually constitutes a form of extermination.
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Phil, thanks a lot for your reply. It is so disappointing that you actually had to file a complaint against the ombudsman! I am happy to hear that you did have a right to a lawyer and that you finally managed to find a trustworthy one.
You are so right in saying that many people on the outside “donât know and wouldnât believe anyway what happens in a psychiatric ward” – I fully agree with you that MIA is doing crucially important work.
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Phil, I totally agree with you. When I was held on a psychiatric ward in 2012 (in Poland), I was not even informed that there was a psychiatric Ombudsman who had a duty to regularly visit the wards. I have never seen this Ombudsman and I think that his visits existed only on paper…
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Joshua, people can be held on psychiatric wards without their consent for much longer than a few hours. It is not the same as being in jail – one has no right to a lawyer.
When you say: “…you do your best to never put yourself in a place where anyone could give such a diagnosis. So if people approach you and seem to want to do that, tell them to go away and not to approach you again, ever.”
But you forget that many people receive a psychiatric diagnosis when they are involuntarily committed. This happened in my case almost 10 years ago. I could not tell psychiatrists to go away and not to approach me again – in fact, if I had talked to them in this way, this would have been seen as a symptom of my “illness” and I would have been surely prescribed higher doses of neuroleptics… (I was forced to take them in the hospital, just like Phil).
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Gina, dr Taylor is not a psychiatrist. She is a feminist psychologist.
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Rebel, you say “we do need some semblance of laws and regulations to govern both those who apply for disability, those who decide who is disabled and, also, those who do make recommendations as to the determination foe disability”.
The problem is that these laws and regulations can be very unfair for people who genuinely need help. In the case of mental/psychiatric disabilities it can be very difficult to prove that a person is “disabled enough” to deserve help.
Of course a disability should not make anyone feel worthless or inferior to others. However, if we say that literally everyone is disabled, the concept of disability loses all meaning and usefulness.
I think that we could all agree that there are people who are in good health and who don’t have difficulties with social functioning. We could also agree that among people with psychiatric diagnoses there are people who encounter very serious difficulties with social functioning.
A psychiatrist can claim that a person is not “disabled enough” to deserve a disability payment or other support. However, in many cases the psychiatrist has only a very limited (if any) knowledge about the person’s problems.
I find it easy to express myself, so psychiatrists don’t see me as “disabled enough” despite my “schizophrenia” diagnosis. They don’t understand my social difficulties or they simply don’t care about them.
I think that we have to remember that the system has not been created to genuinely help people with psychiatric diagnoses. The system does not care if they are alive or dead. If the system cared about vulnerable people, they would always receive the support they need.
To return to people who “abuse the system”, I think that they are doing it because they feel that they have no other choice.
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Rebel, I agree with you to a large extent. I think, however, that if we say that “each one of us no matter our situation is both abled and disabled”, this erases the difference between people who are really struggling because of serious difficulties and others. This also erases the difference between those who are coping very well in life – having well-paid and stable jobs, owning houses and apartments, having much more money than they need, large social networks – and others.
It is obvious to all of us that not everyone is poor and/or socially isolated. Many people’s mental health issues are directly linked to their poverty or even caused by it.
If we say that every person is abled and disabled at the same time, we still have to find a way to decide who deserves help and support. Otherwise we may end up saying that no one deserves it, that people should just “try harder”, whether they are billionaires or homeless. As any of us who has ever experienced poverty knows, it is not true that we are all facing the same “problems in living”.
As to people who “abuse the system”, I don’t think that there are many affluent people who lie about being disabled in order to get some money. I guess that most of these people see the disability payment simply as their way of surviving in a very cruel society.
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I agree with Harold. One can interpret the term “disabled” in a negative way, but one can also say that people with various disabilities are simply people who have difficulties with functioning in society because of their health problems or other personal features.
Disabilities are largely created by people’s environment, including society’s attitudes. To take an example, a person with experience of psychosis who is afraid of societal stigmatization can be seen as disabled simply for this reason. The necessity to hide one’s experience of psychosis or to convince others that one is not unpredictable and dangerous is a very real problem.
I would also say that if a person is expected to agree to use neuroleptics as a condition of any support, it is also an excellent example of the way society disables (and oppresses) people with experience of psychosis.
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I fully agree with Steve and Christine. People have the right to the help/support they need. And there are certainly people who are disabled for mental health reasons. We should not assume that people deserve help only when their disabilities have observable or provable physical causes.
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Jesse, problems can be only temporary. However, there are people who have very serious problems e.g. with social interaction or with “fitting in” all their life, since their childhood.
Disabilities include long-term mental impairments, e.g. according to the Article 1 of the UN Convention on the Rights of Persons with Disabilities.
You ask: “If one says a disability isnât caused by a physical impairment, what is then being used to determine disability?” A person can be disabled even if s/he does not have an observable physical impairment. I see two problems here:
1. Your question seems to imply that there is no such thing as long-term mental impairment. There are many examples of people who are unable to find or keep a job or even simply to look after themselves because of very serious and long-term mental health issues. I have seen many such patients when I was locked on a psychiatric ward.
2. Currently there is no way to prove that there is no physical impairment of any kind in the organisms of people who experience or have experienced psychosis. Let me use my personal example: my psychotic episode began when I was taking an anti-malaria drug which may cause auditory hallucinations. I have never experienced another bout of psychosis, though I am not using neuroleptics.
Many people use the same anti-malaria drug without experiencing any hallucinations. I am sure that for some biological reasons I was much more prone to developing psychosis than most other users of this drug. I am unable to indicate the impairment which made me susceptible to psychosis, but this does not mean that such an impairment does not exist.
You also rhetorically ask “If I feel disabled, am I?” First of all, I have not been talking about people who merely “feel disabled”. In my own case, I have experienced serious social difficulties since my childhood, a psychotic episode and ostracism at work. I find it difficult to “fit in”, I have often been rejected by others, I am very socially isolated.
If I say that I can describe myself as disabled, it’s not because I want others to feel sorry for me or because I feel inferior to others, or because I think that I can benefit in some way from describing myself as disabled. It’s because I know how different my life and problems have been from the lives and problems of most other people.
People who have never experienced similar problems with social functioning often struggle to understand them. For most of my life I kept being blamed for my problems by people who claimed that there was something wrong with me, that I should “change” (most of them never explained what they meant).
The idea that disability is real only if it has an undeniable physical cause is highly questionable. My mother has a friend whose adult son is severely autistic, unable to talk and to live on his own. There is no proof that his situation is caused by a physical impairment, but it would be ridiculous to say that he does not have any disability.
Telling someone “no, you are not disabled” can be a form of gaslighting, of telling him or her “your problems are imaginary, stop feeling sorry for yourself”.
I will end with this example from my own life: for some reason I was unable to learn many things at physical education lessons, or I was doing them much worse than others. Unfortunately there was no name for my problems. The teachers assumed that I was simply not trying hard enough… My problems were very real, though I did not have any visible physical disability.
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Daiphanous Weeping, thank you so much for your comment and for sharing your sister’s story. I am so sorry to hear that she is no longer alive.
Yes, I fully agree with you that far too many people reject others’ harmless differences. This has certainly been my experience. I find it very sad that some people assume that if someone is rejected by others or if someone has no friends, it means that there is something wrong with the person – not those who reject him or her or those who refuse to be friends with him/her.
When you say that your sister had only one partner, in her 40s, I can relate so much to this aspect of her experience. Again, so many people silently assume that everyone has had “romantic” relationships. People who find this area of life difficult for all kinds of reasons can feel painfully excluded or throw themselves into relationships with toxic people in order to prove to others and themselves that “there is nothing wrong with them”…
I have never been able to understand why so many enjoy mocking people they perceive as “weak”. It is such an excellent example of human cruelty! I can be very sarcastic, but only in order to teach a lesson to someone arrogant and obnoxious. They are the ones who deserve to be mocked in order to learn how their victims feel.
When you say that angels work through their ambassadors – the rejectable – and not through arrogant and cruel, but “successful” people, I feel that you are expressing a very deep truth. Thanks to my experiences my instinct is always to empathize. I feel sorry even for the bullies who hurt others because of the emptiness in their souls.
My experience of psychosis has further increased my compassion for others and my hatred of cruelty (including, of course, emotional and verbal cruelty). Once again, thank you for your very kind and deeply moving words!
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Christine, I could not agree with you more. As you say, unfortunately many believe that only problems which have genetic or biological causes are real. There is a widespread belief that some people are just “making excuses for themselves”, “feeling sorry for themselves” or even being simply too lazy to work.
I fully agree with you – people with serious psychological problems deserve support independently of the causes of these problems. I can’t say that the problems I have been having since my childhood have a biological cause, but I know that they are very real problems.
There are many types of disabilities and we have to remember that disabilities don’t have to be caused by a physical impairment.
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Jesse, thank you so much for your very kind and thoughtful reply to my comment. Yes, it is very nice to virtually “meet” in this way and the Mad in America website is definitely one of the friendliest online spaces I know!
I agree with you that no one should have the power to say that someone else is “disabled”. In general, no one should believe that they have the right to label another person in some way.
You say, “It seems to some that, if one *feels* disabled, then they are.” I don’t personally think that people with various problems are quick to label themselves as “disabled”. I would rather say that many people are quick to embrace various psychiatric labels and often seem to find them somehow reassuring.
Jesse, you say: “What if you and I could get the help and support we need without having to be referred to as disabled?” Yes, of course people should be able to get the help and support they need without having to refer to themselves as “disabled”. However, I don’t feel that I am forced to accept the label “disabled” in order to have a chance to get financial assistance etc. in my country.
Let me explain my attitude more clearly. I am genuinely forced to use the “schizophrenia” label in order to try to get a disability payment, though I reject this label. But I have no problem with the term “disabled”. I don’t find it negative, painful or stigmatizing, unlike the “schizophrenia” label.
I think that labels like “mentally ill” or “schizophrenic” are far more stigmatizing than “disabled”. As we both know, many people fear the “mentally ill” and find them repulsive, believe that they should be forcibly treated etc.
You say that the label “disabled” can “lead many people down the very dangerous road of taking dangerous psychiatric drugs”. However, people start taking or being forced to take these dangerous psychiatric drugs when they get a psychiatric label – not when they are labelled as “disabled”.
No psychiatrist has ever told me: “you are disabled”. And if a psychiatrist had used this label, it would have made me feel much better than the labels “schizophrenia” and “mental illness”.
Of course in a sense everyone can say: “there are things I can’t do or don’t have, there are things I can’t achieve” etc. But I am not talking simply about individual limitations and frustrations…
As I have been trying to explain, I know that my development has been strikingly different from the one of most people. Even today I find it difficult to talk about it because I know that most people take certain things for granted…
To take just a few examples, for long periods in my life I was used to not having any friends, not even one. I have never assumed that I would find a partner as an adult. I did not have boyfriends.
I found my only real relationship only in my late 30s, after some very painful experiences. Some men clearly assumed that I was desperate or that there was something wrong with me – in fact, in some cases I was ready to give plenty of love and attention while expecting very little from the other person.
As I said earlier, I was extremely isolated in my workplace. I am used to being rejected by other people for reasons I don’t really understand.
I look at my life and I see how different it is from the life of most other women my age (I am now 41). I have only one friend and I feel very lucky because we will probably never stop talking to each other. I can openly talk to him literally about everything.
I can’t openly talk to most people about my life because there are things I have to hide (like my psychotic episode) and because I don’t want to be pitied. I don’t want anyone to pity me because I don’t have a partner or a successful career.
I am not saying that it all somehow makes me “disabled” in an objective sense. But I know what kind of difficulties I have encountered and I know how hard I have had to struggle to experience even very basic things (the first romantic kiss etc.).
I know that I could think of myself as “autistic” (I do have some traits associated with autism), but this label does not really describe me. In fact, there are many autistic people who have never had such social difficulties.
I once said in an online group for autistic women that I am wondering how they have been able to find their partners (the vast majority of them had male or female partners). No one responded and I guess that others were surprised by my question and did not know what to say…
Let me make it clear that I don’t feel unhappy because of not having a partner – I am simply sometimes wondering why (as it seems) plenty of people did not find it difficult to find a partner or to make friends.
You may have experienced similar (or different, but no less serious) difficulties yourself. I hope that even if your experiences were much more more painful than mine, you have also been able to fully accept yourself and your life.
I do sometimes feel very bitter, especially when I think about people who did not really appreciate me, though I was truly doing my best (and maybe simply trying “too hard”!). But I accept these feelings of bitterness and I am glad that I no longer talk to these people…
Jesse, all these things you say about me are so kind and heart-warming. If more people were like you, this world would be a much better place for everyone, not only those who feel “different”! Some people seem so cold and self-centered, but they somehow tend to think that they are “more normal” than those who find it easy to show warmth to others… This speaks volumes about the world we live in!
Yes, I will keep doing my best, and I would add that my experiences have made me stronger, more resilient and happier! Yes, I am much happier now than I was in my 20s… I worry much less about what other people think about me and it is very liberating.
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I really appreciate your comment, Christine, thank you for your kind words!
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Jesse James, I don’t think that anyone here is saying that people who are suffering should label themselves as “disabled” or “dysfunctional”. But “disability” can be defined in various ways. It does not have to mean anything negative, it does not mean that the “disabled” person is inferior to other people.
In my own case, I certainly don’t feel that there is something wrong with my brain. But I know that since my childhood I have had difficulties which most people don’t experience. For some reason many people did not accept me, even when I was trying hard to “be like others” (actually I was sometimes very painfully rejected when I was trying hard to “fit in”).
I feel that lots of people somehow sense that there is something “different” about me and don’t like it. I feel deeply grateful whenever I feel truly accepted by a person. I had a psychotic episode when I felt rejected by someone I saw as my only friend.
Because of my social difficulties I am very isolated and I have not had many experiences which most people take for granted. In today’s world social skills have become extremely important; life can be very hard for those who are perceived as “weird”.
I know that my being very isolated in my workplace was the main reason why I lost my job. If a colleague talked to me, I felt grateful. I am now unable to earn a living, though I am a highly educated person and an excellent translator.
To me, “disabled” does not mean that I see myself as inferior to other people. I simply see that there are things I can’t do or don’t have because I am different, because my development has been different. Even though I have gained in confidence in recent years, there are things I simply can’t achieve – things which seem natural to most people.
2 years ago I joined my country’s association for psychological and social approaches to psychosis because I was hoping that I would be valued there as a sociologist with personal experience of psychosis. Sadly, I was very disappointed – no one was interested in me, my knowledge and my experiences. I was probably dismissed as a “patient” with nothing important to say, though I don’t see myself as mentally ill and don’t take psychiatric drugs…
This is how many “professionals” treat people with experience of psychosis – they often seem to think that these people have nothing important to say (a psychiatrist kept interrupting me whenever I tried to say something). Yes, people with experience of psychosis are often dismissed or even ignored by “professionals”. Or they are patronized…
I believe that I have the right to financial assistance or to supported employment. I am a person who has accumulated many experiences of being rejected since her childhood, I am a person who is very isolated. I don’t find the term “disabled” offensive in any sense.
I know that I will probably always be poor and I don’t have a problem with it. I simply want to feel safe, to know that I will never risk being hungry or homeless. I think that plenty of people don’t even realize what it means to be a poor, socially isolated person with experience of psychosis who does not get any kind of disability payment… (And I am one of the lucky ones because I have a few loving family members and because I feel quite happy despite my situation).
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Boans, it is thought-provoking that you felt “like you had woken as a black man” when you became a psychiatric “outpatient”. You say that “all that pent up hatred by police for blacks” was “vented on the white man who has had their right to complain taken from them via a label applied by a community nurse”.
It seems that in America and many other countries white people tend to take it for granted that they have rights of which Black people are routinely deprived. It is striking that many white people feel that they have realized what oppression means only when they become psychiatric patients… However, there are also other kinds of oppression which affect people of all skin colours, including poverty, domestic violence and childhood abuse.
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Daiphanous Weeping, I fully agree with you that the idea that older people have somehow “outlived their usefulness” is incredibly harmful and toxic.
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Thank you so much for your very moving, insightful and courageous article! You have bravely confronted your own family’s history, which must have been very difficult and painful.
It is quite shocking that some publishers and literary agents believe that there is “no market for books about Africa and Africans”. The history of colonial Rhodesia, including the racist segregation in this colony, is much too little known and often seems forgotten. I have just ordered your memoir and I am looking forward to reading it.
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Bill, yes, of course I have considered it. I have been working as a translator and I have even translated two books since losing my job.
However, this profession is extremely competitive and very badly paid, so I have been unable to earn a living in this way. One’s social capital (whether or not one has friends in publishing houses etc.) plays a huge role.
And most of the translators who are much more successful than me work extremely hard, which is definitely not good for their health. This workaholic lifestyle is seen as normal in the profession.
As I explained in one of my comments, in order to become e.g. a psychotherapist I would first have to pay for a very expensive course. I don’t currently see any other opportunities for self-employment in my case. My love of writing, reading, research and foreign languages is sadly not enough to earn a living!
Let me add that I am quite an introverted and contemplative person, which makes things even more complicated…
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Thank you, Daiphanous Weeping, I really appreciate your comment!
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Chuck writes in his article: “In addition, the disability system can create a strong social and financial dependency that can conflict with the goal of recovery. So, those who use the system can pay a very high price.”
This is how many people think – that disability payments create dependency. What these people don’t realize is that it can be very difficult to stand on one’s own feet, especially if one comes from a poor background.
It is easy to say that disability payments create dependency if one is a psychologist in private practice. I wanted to become a psychotherapist, but I can’t afford to pay for a psychotherapy course. They are simply much too expensive.
If a person does not have any income and can’t find or keep a job, the situation is very dangerous to this person’s health, both mental and physical. It is much worse than getting a disability payment. Being afraid of hunger and homelessness can never be good for people. I have experienced unemployment and I know how an unemployed person feels.
I think that the author also forgets that poverty deepens people’s social isolation. As an example, I can’t afford to go to restaurants with other people. I go to a hairdresser as rarely as possible. I don’t buy new clothes. I can’t travel to another city or country whenever I feel like it. I can’t openly tell people that I am simply too poor to do things they take for granted.
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Ron, you make an excellent point: “…if we lived in a society where everyone got their basic needs met whether or not they worked jobs etc., then we wouldnât need to be trying to figure out who is disabled and who isnât.”
You mention people who “are in a mental state that is stopping them from being employable”. There is nothing wrong with my mental state, but I don’t fit in. I have always been an outsider and a loner, since my childhood.
I had very serious social difficulties for most of my life. There were periods in my life where I had literally no friends – not even one person. I have gained in confidence in recent years, but there is now a gulf between me and most people, a gulf I can’t overcome (in terms of social capital etc.).
I don’t know if I am “employable”. And the very term “employable” is highly problematic. Of course, in every society there are some hard and extremely stressful jobs which few people are ready to do, but if a person accepts such a job only out of necessity, is it a good thing? If the job mentally and/or physically destroys the person, will it be a good thing? And would it be fair to expect a highly educated person to work at a job largely below their education level only because the person is unable to find any other job?
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Many thanks for your comments, Tina. You say that some of us “do need and want supports, services, and reasonable accommodations in relation to the distress/unusual perceptions we experience whether once or many times or all the time.” I agree with you and I would add that some of us need and want supports etc. because they find it very hard to function in a capitalist society, even if they no longer experience distress or unusual perceptions.
Like you, I have been “locked up”. But even though most people don’t know about it and don’t discriminate against me for this reason, I sometimes feel painfully different from others and I have felt that way since my childhood. I have embraced my difference, but it creates very real problems in my life.
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In the case of psychiatric survivors or neurodivergent people one of the “enabling accommodations” could be simply financial assistance. It can be very difficult to find and keep a job if one is e.g. prone to psychosis.
I personally have had social difficulties since my childhood. I have simply not had the same type of development as most people. I find it difficult to make friends; I have had very little experience with relationships; I tend to feel like an outsider in groups.
I have had only one steady job, despite a very high level of education. I don’t have a competitive mindset, I am not good at promoting myself. I have never wanted a career, I enjoy a peaceful life and feeling free.
I am not a lazy person, but I have not been able to find a job where I would be able to use my knowledge, talents and skills. I am now trying to gain teaching qualifications, but I don’t know if I will be able to work as a teacher (I am afraid of being rejected by other people, of being mocked behind my back etc.).
I don’t identify with any psychiatric label (though I have experienced psychosis), but I think that some people find it really hard to survive in a capitalist world – and that I am one of them. I don’t know if I would be currently able to find a job (ANY job) in my country (I did try to find a job in the past – unsuccessfully). I have been able to pay for my teaching course only thanks to my mum’s help.
I was getting a disability payment because of “schizophrenia” for a year – it is a ridiculously small sum in my country, but at least I had an income and I had some rights as a disabled person (reduced price bus tickets etc.). I was never ashamed of using my disabled person ID card.
I am trying to get a disability payment again and I do see myself as disabled. Not because I see myself as mentally ill/disordered (I don’t), but because I am simply unable to earn a living, and because I know that it is linked to all the things which make me different from most people.
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Daiphanous Weeping, I am very happy to hear that you like my writing! As to the term “schizophrenia”, I understand why you find it useful. I think that there are no “good words” and “bad words” when people are talking about their own experiences.
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Steve, yes, I have also read that smoking lowers the level of neuroleptics in the blood. I am sure that this could partially explain why so many patients in mental hospitals and so many people labelled with “schizophrenia” are heavy smokers.
I agree with you that the psychiatric industry does not take it into account – as you said, it is generally trying to blame the shortened lifespans on people’s “lifestyle”.
At the same time, I don’t think that we can safely conclude that many people diagnosed with severe mental illness smoke because of neuroleptics. Poor people are more likely to smoke. Smoking is one of the few pleasures available to the poor, and it is also more difficult to get help in quitting smoking when one is poor.
In one of my comments I mentioned a man who was diagnosed with “schizophrenia” and a heavy smoker and who died from lung cancer. One of the sisters of this man – who did not have any psychiatric diagnosis – was a heavy smoker, too, and also died from lung cancer.
The thing they both had in common was poverty and maybe also childhood trauma (they lost their parents at quite a young age).
If we say that neuroleptics cause people labelled with severe mental illness to smoke, this will be too simplistic. Neuroleptics definitely play a role here, but there also other factors, including poverty and stress. There are people on neuroleptics who never start smoking.
Of course various lifestyle factors shortening the lives of people labelled with severe mental illness are closely linked to their situation. People who are poor and stigmatized are much more likely to do things which harm their health, including drinking, being physically inactive, eating junk food etc.
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Rebel, as to the “Torrey Argument”, I feel that you have misunderstood me. I did not say that the lives of patients diagnosed with schizophrenia are shortened only or mainly because of smoking.
I am not defending psychiatric drugs. I was forced to take neuroleptics in the past (in a hospital). I refuse to take any psychiatric drugs, I know that they are harmful.
However, it is not true that the lives of patients diagnosed with schizophrenia are shortened only because of neuroleptics. There are many other negative factors in the lives of most of these patients, including poverty and social isolation. Many of them are smokers and some of them die because of lung cancer which is usually caused by tobacco smoke.
A relative of my mother’s husband was diagnosed with schizophrenia, but he was also a heavy smoker. He died from lung cancer. He kept smoking even when he had terminal lung cancer. We can’t say that his illness and death was caused by neuroleptics.
Let us not forget either that many patients diagnosed with schizophrenia don’t take neuroleptics or take them only occasionally. Many psychiatrists are complaining about it in their books and articles!
The shortened life expectancy of psychiatric patients does not have a single cause. We can’t blame everything on psychiatric drugs and say that all the other negative factors are of no importance.
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Rebel, I also think that there is something wrong about this discussion, though for different reasons. The idea that psychiatric patients now have it worse than in Nazi times – or at least just as bad as in Nazi times – is based on emotions, not on facts, and disrespectful to the victims of the Nazi extermination of psychiatric patients.
As I have said many times here, the Nazi extermination of psychiatric patients was planned. There are facts and documents which prove that these patients were murdered. We are not talking here about conjectures, or about lives which were shortened because of the long-term effects of toxic drugs, or about people who took their own life while using a psychiatric drug. We are talking about people who were literally murdered.
Most people know very little about the Nazi extermination of psychiatric patients. They were not murdered in death camps or in concentration camps. Most of them were actually murdered in asylums. Psychiatrists and psychiatric nurses were actively participating in these crimes.
There is absolutely no evidence that today’s psychiatrists want to kill their patients. Psychiatric drugs have many harmful effects, but they are not prescribed in order to kill or to harm the patient. They are prescribed because of the dogmas of biopsychiatry, because of the power of Big Pharma, because it is much easier to give a person psychiatric drugs than to provide free psychotherapy and to improve the person’s life, and finally because society is simply scared of the “mentally ill” because of the prevailing stereotypes.
As I have said in this thread, many patients want to take psychiatric drugs. This is very important – in very many cases these drugs, especially antidepressants, are NOT forced on unwilling people. We can say that most people don’t know enough about the long-term effects of psychiatric drugs, but we can’t say that people who are willingly taking psychiatric drugs are passive victims tortured by evil psychiatrists.
As I said earlier, some of the people who are using psychiatric drugs actually get angry if someone is criticizing these drugs. Of course we can say that they are brainwashed, but we can’t deny the fact that many people want to be prescribed their favourite psychiatric drugs and believe that the drugs are helping them.
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Someone Else, you mention a doctor who – as you believe – wanted to murder you. But you also say that this doctor wanted to cover up her husband’s malpractice. We can’t compare it with planned extermination of hundreds of thousands of people.
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Someone Else, only some people experience psychosis on psychiatric drugs. Importantly, there are also other drugs which may trigger psychotic symptoms in some people. My psychotic episode actually began when I was using an anti-malaria drug.
Psychiatric drugs definitely have many harmful effects – I am not defending these drugs. But doctors don’t prescribe them in order to kill their patients. In Nazi Germany psychiatrists were literally sending patients to gas chambers.
Let’s not forget that only some psychiatric patients are forcibly treated with psychiatric drugs. Countless other patients take them willingly. Some people even get angry if someone says something critical about the psychiatric drugs they are using!
Psychiatrists are often much too dismissive about the negative effects of psychiatric drugs, but it is not the same as exterminating people. Today’s psychiatrists don’t intend to kill their patients – in fact, a patient who is alive for many decades and dutifully taking his/her medication(s) is much more useful to psychiatrists and to Big Pharma than a patient who is dead!
Prescribing drugs with harmful effects is not the same as intentionally killing people. There is a crucial difference between a psychiatrist who is convinced that his/her patient needs a psychiatric drug and a psychiatrist who thinks that his/her patient should be killed in order to reduce public expenditure.
Psychiatric patients diagnosed with schizophrenia tend to have shorter lives than the rest of the population, but neuroleptics are not the only cause. As an example, some of these patients die from lung cancer caused by smoking (unfortunately, for some reason patients diagnosed with severe mental illness are very often heavy smokers).
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Bippyone, I definitely agree with you. I experienced psychosis, though I was not using any psychiatric drugs before the psychotic episode. I have recovered, and I am sure I was able to recover because I refused to be a long-term patient. I also agree with you that what we need are sanctuaries without force!
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Daiphanous Weeping, there are many people who have experienced psychosis, but who don’t believe that they have schizophrenia. Psychosis does not have to be lifelong.
I have personally experienced a genuine psychosis (I had “voices” and delusions), but I don’t believe that I have schizophrenia. In fact, I have never had a so-called relapse despite not being on neuroleptics.
This article is not implying that psychosis is merely “unhappiness from lifeâs ordeals”.
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Dear Fiachra, thank you for your reply. I want to make it clear that I know very well what akathisia is – I suffered from horrible akathisia myself when I was on neuroleptics.
I was not frightened or distressed by your comment. I simply think that we can’t compare planned extermination to being prescribed a drug associated with suicidal thoughts and attempts in some people.
I don’t think that psychiatrists who prescribe akathisia-inducing drugs want their patients to take their own lives. In fact, plenty of patients are prescribed akathisia-inducing drugs, but only some of them attempt suicide or die by suicide.
To me, akathisia was horrible, but it was definitely not the worst thing in my case. The worst thing was the feeling of hopelessness caused by my “schizophrenia” diagnosis. If I had attempted suicide while on neuroleptics, a researcher might have wrongly concluded that the drug-induced akathisia was the cause of my suicide attempt.
You say that “about 4 out of 10 of the people on these drugs will attempt suicide.” I don’t know where this number comes from (it does not come from the “Depot Antipsychotic Drugs Revisited” paper).
This number seems much too high. Anyway, the fact that a person attempts suicide while using an akathisia-inducing drug does not prove that the akathisia is the *only* cause of such a suicide attempt, or that akathisia is *always* or *usually* linked with suicidal thoughts and suicide attempts.
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Dear Fiachra, I know that you feel that Fluphenazine caused your suicide attempts. I also understand why you describe your psychiatrists as psychopathic.
However, Nazi psychiatrists aimed to literally exterminate psychiatric patients. Nazi psychiatrists saw the lives of these patients as worthless, “unworthy of life”.
These people were murdered in cold blood, on a mass scale, just like Jews. This was a planned and well-organized extermination programme. Psychiatrists and psychiatric nurses were actually personally participating in this much too little known programme.
Psychiatrists who prescribe Fluphenazine are not doing it in order to exterminate their patients. Only some people take their own life while using Fluphenazine. And it is impossible to say that Fluphenazine is the cause of such suicides. There are no data which would allow us to make this claim.
Even if it were possible to prove that Fluphenazine (or another psychiatric drug) is the only cause of some suicides, it would be impossible to compare it to the planned extermination of psychiatric patients by the Nazis.
You say that you believe that “the Fluphenazine killings would also have been well in excess of 137,500 Deaths.”
First of all, suicides associated with Fluphenazine use can’t be called killings. There is a proven link between alcohol use and suicide, but somehow no one calls suicides associated with alcohol use “alcohol killings”.
Secondly, we simply can’t compare planned extermination with suicides associated with the use of a psychiatric drug. Suicide is always a person’s decision. It is not the same as being murdered in cold blood.
If we put on the same level the suicides of people who were taking psychiatric drugs and the deaths of people murdered by the Nazis, we will disrespect the memory of the victims of the Nazi extermination programme.
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The Nazis murdered between 100â000â137â500 of patients diagnosed with schizophrenia between 1934 and 1945, as estimated in this article http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2800142/. Many of these people were murdered in gas chambers. The number of the victims must be much higher than the authors believe if we take into account all the countries and territories under the Nazi occupation.
The article “Suicide associated with akathisia and depot fluphenazine treatment” does not say how many suicides may be associated to fluphenazine treatment. And even if we had such statistics, I certainly don’t think that we should compare deaths by suicide associated with fluphenazine to the deaths of psychiatric patients exterminated by the Nazis. The latter had absolutely no way of escaping their horrible death.
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This is a deeply moving story to which I can definitely relate, though I have not experienced such unimaginable horrors as the forced electroconvulsive “treatment” described by the author.
I, too, felt very isolated as a child and rejected by my peers who sometimes overtly bullied me. In later years I have accumulated many similar experiences, including in my student years and in my former workplace – in some periods of my life I was actually surprised when someone showed me friendliness. Only in recent years I have gradually come to terms with the fact that many people reject(ed) me only because I am/was not like them.
I used to struggle (and still sometimes struggle) with deep and painful insecurities, certainly largely caused by my experiences of social rejection. During my only psychotic episode, almost 10 years ago, I heard voices telling me, among others, that no one wanted me, that I was ugly, that my teeth looked horrible and that no man would ever kiss me for this reason, that I was boring and spent my days reading the newspaper.
My psychotic episode was triggered by an emotionally painful (maybe even traumatic) experience, but I am sure that many of the things the voices were saying reflected the pain and fear I often felt since my childhood because of all the accumulated experiences of being isolated, rejected and bullied. The fear of mocking and cruel things someone might say to me or behind my back; of others’ jeering laughter and demeaning labels and nicknames.
I have greatly gained in confidence in recent years, but fear still sometimes overwhelms me when I think that someone or even a group of people might start cruelly deriding me, e.g. because of an unpopular opinion on some issue.
I am sure that many people’s cruelty to those who are “different”, those who are stigmatized and those who are seen as losers or failures is one of the main causes of emotional distress and “mental illness”, including psychosis.
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Gina, hope is possible also for older people who are psychiatric survivors. One of these people was Chrys Muirhead who unfortunately recently died from cancer. She felt that life had been unfair to her, but she loved life at the same time. http://www.madinamerica.com/2021/10/rip-scottish-psychiatric-survivor-activist-chrys-muirhead/
I am very sorry to hear that this doctor/clinic will not take your welfare benefit card. I think that there must be some specialists who accept patients like you, but I don’t know enough about the US healthcare system to give you any useful advice. Maybe someone else will…
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I understand what you mean when you say that it is difficult for you to get advice from strangers. But let me just say this: maybe you would be able to find a job where no one would ever yell at you.
Some people actually do prefer worse paid jobs to well-paid, but more stressful ones. Academic jobs are among the most stressful jobs and some people choose to leave academia.
I know that social security disability is not guaranteed, but I think that there would be no harm in applying for it…
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You are very welcome, Gina. I am touched by your reply to my comment and very glad that you found my words kind and encouraging. I am also very happy to hear that you keep “fighting and surviving and plotting”, as you said!
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Gina, you really don’t have to explain to employers why you no longer work at the college. You can simply say that you wanted to do something else, that the college job was too stressful or unsatisfying.
It is not easy to get a publishing contract for a memoir. And even if you do get it, you have to find some way of surviving before you get it.
If I were you, I would also apply for Social Security because of arthritis etc. – you have the right to Social Security, you don’t have to work.
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Gina, thank you once again for your reply to my comment. I am happy that you appreciated it!
Yes, fortunately I have been able to heal to a very large extent. But I find it sad that there are experiences (including my stay in a mental hospital) I feel forced to hide, though I have not done anything wrong.
However, a bigger problem is my economic situation. Without my mum’s financial help my life would have been very stressful because of the very limited job opportunities for women like me, women who don’t fit in and don’t want to fit in the capitalist world of ruthless competitiveness, unquestioning workaholism, constant self-marketing etc.
But I actually feel quite happy – my happiness comes from the inside and from my connections with people I trust (there are not many of them…).
I can tell you that the experience of being labelled as “mentally ill” does not rule out happiness, though in order to feel happy one often has to reject many mainstream beliefs, including the idea that one must have a successful career and plenty of friends to be happy.
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Gina, I saw your reply to my comment in my emails, but I don’t see it here. You are very welcome!
You are so right in saying that your depression is caused by real blows to your life. People can be extremely distressed because of traumatic experiences, poverty, isolation etc. Mainstream psychiatry tends to overlook these very real causes of people’s emotional distress.
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Gina, please don’t leave this website. It is a safe and friendly space, no one is allowed to bully anyone here.
I experienced “psychiatric incarceration” in 2012, for more than a month. Like you, I used to work as an academic and I have experienced unemployment. I have not had a steady job since 2018 (when I lost my university job). Like you, I don’t have children. I feel that my society is callously indifferent to the situation of people who “don’t fit in” for some reason.
I really hope that you will soon feel better. Please stay with us and feel free to write here.
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You are very welcome, gracezw!
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@dmschlom, I am not in the least surprised by what you say about the “unspoken rule”. I think that it is corporate welfare as you say, though maybe it is also widely assumed that people who are prescribed neuroleptics are much more disabled enough” than those who are prescribed e.g. only antidepressants.
I am not surprised either by the fact that gay men with HIV get so little money compared to the costs of HIV drugs. As you said (also in your earlier comment), the establishment serves the interests of corporations. The level of hypocrisy can be staggering (corporate feminism which portrays itself as the only feminism is a great example).
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A really fascinating and illuminating interview! Dr. Hansen has co-authored a very interesting article which shows that psychiatric diagnoses have become a survival strategy for many poor people because of the changes in the US welfare system introduced by the 1996 Personal Responsibility and Work Opportunity Act: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3920192/ One can observe the same phenomenon in many other countries.
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Ruby, I can relate so much to your experience. Thank you for describing everything in such a beautiful, touching and thought-provoking way! (I was not at all surprised when I read that you are now in a creative writing program). And you are so right about evil: evil can so often mask as good. I guess that most psychiatrists are genuinely convinced that they are helping their patients, that the patients have biologically-based diseases and that patients who are “uncompliant” simply don’t know what is good for them.
I was put on Abilify in 2012, after a psychotic episode. I have experienced the emotional blunting you mention, as well as many other side effects, and I felt that my life had become sad and almost meaningless. I sometimes even felt suicidal, though it had never happened to me before. I often felt that my life, my real life, had ended, and that I was no longer myself.
Psychiatrists did not even want to reduce my dose – I was getting the standard one, though I am less than 5’2 tall. But just like you I felt that I did not want to “accept the terrible fate others had already accepted for me” – to spend years and maybe even the rest of my life without feeling truly alive, without even being able to have real conversations with my family members (Abilify caused a horrifying emptiness in my mind, as if I had literally nothing to say to others).
Fortunately I was able to come off Abilify after spending more than a month on it. I have never told psychiatrists about it and simply stopped registering for psychiatric appointments. I have never had another psychosis. After losing my job in 2018 and a period of unemployment I felt forced to get involved again with the psychiatric system in order to be able to apply for a disability pension.
I feel uneasy because of this involvement with the system, but I feel that I have no other choice. I am not taking the prescribed neuroleptics, but I can’t be open about it. Anyway, I was receiving the disability pension only for a year and I have now been fighting for many months to get it again (my case is now in a court). But even though I am poor and forced to rely on my mum’s financial help and on my various small freelance jobs, I am very happy and I feel free.
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Thank you for this really fascinating account of your experiences with psychiatrists and the people from the MIND magazine!
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I do think that it may be like Stockholm Syndrome in many cases. However, I also think that there are people who decide to become “peer supporters” etc. because they don’t have any better job opportunities. For many people (e.g. those who are open about their psychiatric diagnosis) this may even be the only job opportunity.
In my country (Poland) these posts seem to be coveted and there are very few of them. People with lived experience can’t simply apply for one of these posts: from what I have read, psychiatrists may offer this job opportunity to some patients – well, of course they are not going to choose rebellious patients.
In my own case, I am painfully aware that this would currently be the only chance of getting a steady job which would not be very stressful and exhausting (job opportunities for women are very limited in my country). It would be much easier to work as a peer supporter than e.g. as an overworked carer in a care home. But of course I would never want to work for the psychiatric system, obey psychiatrists, ask people if they are taking their “meds” etc. Anyway, as a rebellious patient I have never even been offered such an opportunity!
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Well, I had very mixed feelings while reading this account. I had a psychotic episode in 2012 and spent more than a month on a locked ward, at a public hospital. I was not even able to go outside for more than a month. It was obvious to me that most of the people on my ward were poor. Many patients were stealing from others and even very basic things like sanitary pads were stolen from me: this shows how desperate many of the patients were at my hospital.
Most psychiatric survivors in my country are poor. They are happy if they are getting a small disability pension. I am very educated, with a PhD like the author of this account, but I am now poor myself.
The author claims that she “deserves” expensive cosmetics and keeps mentioning them with relish in her account. Does she actually think that there are women who don’t “deserve” expensive cosmetics and other expensive stuff? Oh, I can understand that it can be upsetting to lose an expensive serum or face mask if one is used to such luxuries, but there are so many people – including psychiatric survivors – who lack basic things. The author also mentions the walks she was able to take, the wine she was able to drink at the hospital etc.
I feel that the author does not even realize what it means to be on a locked ward at a public hospital and how traumatizing these stays can be for many people who are treated literally like prisoners and forcibly drugged (and sometimes even put in restraints). I feel that the author is completely and shockingly unaware of her own privileged situation. She assumes that she simply “deserves” everything she has because she feels that she has been working hard – but there are so many people on this earth who work very hard for very little money and can’t satisfy even their basic needs.
Do all these people “deserve” to be poor and oppressed all their life? Do most human beings and most psychiatric survivors in this world “deserve” to live in poverty? And people locked in psychiatric hospitals experience much worse things than what the author has described.
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kindredspirit, what you say is quite interesting. I have actually sometimes thought that some mild hearing loss might have contributed to my episode of “voice hearing” in 2012.
I may be indeed speaking a bit louder than many other people, and undiagnosed mild hearing loss may be one of the explanations. Interestingly, however, the situations where people claimed that I was “speaking too loud” or even asked me to lower my voice have been infrequent – and these people usually had power over me.
This was actually the most frequent during my stay at the psychiatric hospital and was humiliating – I was fully aware that some of the staff told me to lower my voice and expected me to obey because I was a psychiatric patient on a locked ward.
The first time I have ever been asked to lower my voice was when I was a schoolgirl, and the person who asked me to lower my voice was a male teacher. I don’t really think that I had hearing loss already at that time, and it is striking that no female teacher ever told me that I should speak less loudly.
I actually think that in some cultures many people are not used to women who speak in a confident way. Interestingly, outside my own country I have been rebuked for “speaking too loud” only by two much older white women from the UK.
My parents have never expected me to be a “sweet”, quiet, self-effacing girl, and I guess that this is why my way of speaking irritates some people. And many people with power – like the psychiatric staff or the male teacher – simply enjoy using their power to make others feel small.
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Feral@50, thank you for your reply, I really appreciate it. I guess that there are many people who indeed assume that only people who are dangerous to others can be involuntarily committed.
I find this belief particularly hurtful. Of course there are people who behave in a very inappropriate and even aggressive way on locked wards, but other involuntarily committed people also suffer because of their behaviour. In my own case I did not become violent even when some other patients behaved in an aggressive and abusive way towards me, so the idea that people who have experienced psychosis are dangerous always makes me very sad.
As long as many people believe that psychosis makes people aggressive and violent, it will be very difficult to fight e.g. against forcible drugging.
In my country (Poland), there are psych wards which aren’t locked. I wished I had been admitted to one of these wards when I was psychotic, but unfortunately I did not have a choice in the matter.
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Feral@50, I agree with almost everything you are saying. However, you seem to be implying that people who are involuntarily committed are dangerous and “presenting with aggression toward others”. I want to make it very clear that people may be involuntarily committed simply because they are psychotic and deemed as a risk to themselves. This has happened to me – I have never been aggressive towards anyone.
I actually asked a nurse why they wanted to put me on a locked ward if I am not aggressive, and he replied: “Oh, as an example you are speaking too loud.” Let me explain that I was not even angry – some people simply claim for some reason that I am speaking too loud. And I don’t think that this nurse really thought that I was being “aggressive” – he and others simply thought that a severely psychotic person should be on a locked ward.
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I do agree with you that even toxic people can provide some social/emotional/financial etc. support. People are complex and even toxic people can do good things (sometimes unintentionally).
If someone is able not to tell others that they have come off psych drugs, the situation is not so bad. I assumed that you meant a much worse situation: a situation where someone is literally checking if a person “has taken their meds”. Or giving the person “their meds”.
When someone’s family members are able to control a person’s life to such an extent, I don’t think that it can be good for anyone, even if they also provide some support. Being treated like a child is incredibly toxic. And if we assume that we can’t find any other source of emotional/social support than the person/people who control (s) us, we are being too pessimistic.
You mention “the abused homemaker who if they left would end up homeless, hungry, and cold”. But being systematically abused can be actually much worse than being homeless, hungry and cold. It is often destroying the abused person, both mentally and physically (even if the abuse is only emotional) – and some victims of domestic violence actually end up being killed by their abusers or dying because of their injuries.
Of course a woman who has an abusive partner may assume that her situation “is not so bad”. After all, she has a roof over her head and maybe her partner has a good income; and the partner is not abusing her all the time. But abuse has an impact on the way of thinking of abused people – many of them come to see completely abnormal situations as normal.
People controlled and abused by their partners are never advised to simply endure the abusive situation. There is always a way out, as long as the victim is able to leave the abuser’s house or make a phone call. Being homeless is scary, but it is not as horrible as being controlled by someone until one’s death or the other person’s death. Even some children and teenagers choose to run away from home.
If an adult person diagnosed with a mental illness thinks that their parents or partner have the right to check if they are taking “their meds” – to treat them like a naughty child until the end of their life and to literally force them to take toxic drugs which can cause irreversible damage – this means that the person sees an abusive situation as normal.
Unfortunately, many people assume that if they are “mentally ill”, they automatically have less rights than others. Many people assume, too, that as long as their controlling parent(s) or partner is being “nice” – not physically violent, not calling them horrible names etc. – the situation is “not so bad”. In reality, being controlled and being infantilized for many years or even decades, as well as being fed toxic drugs, is extremely damaging – both mentally and physically.
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Willoweed, what you say is both thought-provoking and very sad. I am very sorry to hear that other people treated you so bad when you wanted to come off psychiatric drugs.
You say that revealing that one is trying to quit psych drugs “causes the opposite of social support” and all kinds of emotional violence. But when someone’s family members/friends are so toxic and cruel, can we actually say that the person does have some kind of social support as long as s/he stays on psych drugs?
When people look down on someone and control him/her, they don’t provide any genuine social support. I think that it is much healthier to lose such a “support network” than to remain under the power of very toxic, controlling and brainwashed people.
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You are entirely right, Steve!
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Dear Mwati, thank you so much for sharing your story, and particularly for mentioning your terrifying experience with this large man who opened the bathroom’s door, the very problematic lack of separation of the sexes in many psychiatric hospitals and the fact that both the rooms and the bathrooms were unlocked.
I live in Poland. In 2012 I was having mental health issues and I actually spent one night locked from the outside in a large room in a psychiatric hospital where I came to seek help. I was supposedly locked in this room “for observation purposes”. Two men were sleeping there. I was frightened and I did not sleep all night. Until today I simply can’t understand why the staff locked a woman in a room with two men!
Finally I was involuntarily committed to the same psychiatric hospital. Again, I was quite frightened when I saw that heavily medicated women were sleeping in unlocked rooms. Strangely, the women’s bathroom was also unlocked, whereas the doors of the cubicles in the men’s bathroom could be locked from the inside (for this reason I actually often used the men’s bathroom). All the showers were unlocked. Fortunately, after some days I realized that the men on my ward did not seem dangerous, so I was able to use the showers.
Just like you, I am unable to understand why the sexes are often not separated in mental hospitals. As you said, men can be actually dangerous to women on such wards or harass them. And it is very true that some of the men on locked wards do have a criminal background…
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Janice Haaken is also talking about so-called Satanic ritual sexual abuse and implies that such abuse never happened. I am not saying that it did happen, but I am wondering why she does not explain why some women believe(d) that they had been abused in this way.
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In Poland psychiatric survivors may be actually refused any form of financial assistance, even if they don’t have any other regular income. This is what happened to me this month. I was refused a disability pension despite my diagnosis of “schizophrenia” and even though I don’t have any regular income. I am now going to have to appeal to a court. There are, however, many people who may find it very difficult to appeal to a court in such a situation
Poland is one of the countries where being refused a disability pension may literally mean hunger and homelessness. The “social assistance” benefits for the poorest of the poor are extremely low here.
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Caroline has an excellent point. First of all, the “mentally ill” are definitely seen as “die-able”. People diagnosed with “schizophrenia” die on average 20-25 years earlier than the general population. The extreme stigmatization of these people and the treatment with neuroleptics are among the causes of this problem.
Secondly, as Caroline has pointed out, Thomas Teo consistently uses the term “people with mental disabilities”. This is extremely problematic. The term “mental disability” is very often used to refer to cognitive/intellectual disability. Only some people diagnosed with serious mental illness have a cognitive/intellectual disability. Many of them are actually highly intelligent and educated.
Dr. Teo lumps together under the term “people with mental disabilities” people with diagnoses like “schizophrenia” and people with an intellectual/cognitive disability. Even when he talks about the Nazi T4 “euthanasia” program, he does not say that the Nazi regime deliberately set out to exterminate people diagnosed with “schizophrenia”. Psychiatric patients were actually the first victims of the Nazi gas chambers.
The German director Florian Henckel von Donnersmarck shows the fate of many psychiatric patients under the Nazi rule in his film “Never Look Away” (2018 – one can read the script of the film online). A young, highly intelligent, sensitive and creative woman is put in a psychiatric hospital after a mental breakdown. Some years later the Nazi doctors decide to first sterilize and later murder her, like many others.
When she finds out that she is going to be forcibly sterilized because of her diagnosis of “schizophrenia”, she says “I know I’m healthy”, but a doctor coldly replies: “Three experts are of a different view” – though we plainly see that there is absolutely nothing wrong with her; she is only much too honest and outspoken for the doctor’s liking.
She later dies in a gas chamber with a group of other women, including a woman with Down syndrome and a woman with a physical disability. It is crucial to emphasize that many German and Austrian psychiatrists were actively participating in this genocide.
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Kindredspirit, thank you so much for your comment. I am still wondering how people from the Social Security Administration can find out about a person’s “failure to follow prescribed treatment” in the case of orally administered psychiatric drugs unless the patient informs them about it.
I am also wondering if the Social Security Administration expects neuroleptics to return a person diagnosed with “schizophrenia” to “substantial gainful activity”. After all, “schizophrenia” tends to be portrayed as a debilitating brain disease which impacts people’s cognitive functioning; and many psychiatrists claim in their books and articles that neuroleptics don’t help with the so-called negative symptoms of schizophrenia (this is yet another psychiatric construct!).
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Evan, many thanks for your reply. I think that there is currently no way of controlling if a person really takes neuroleptics unless they get them in the form of neuroleptics. I actually remember reading an article by a US psychiatrist who wrote that patients could be rewarded with money for taking the drugs! If psychiatrists have such ideas, it means that it is actually very difficult to force people to be “compliant”, even if they are on a social security disability income.
I read yesterday that even if a psychiatrist knows that a patient is taking the medication “inconsistently”, they should simply mention it in the Adult Disability Report. As I said earlier, psychiatrists know very well that many people take these drugs “inconsistently” (if at all). “Non-compliance” is much more frequent than many assume.
I hope that I am again going to get a disability income myself this year. But I will never agree to take these “meds”, even in a very small dose. I know that I don’t need them. My only problem is that for various reasons (but not because of “mental illness”) I have been unable to find a decent, meaningful steady job in my country after losing my academic job.
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Caroline, thanks a lot for your reply. You say that you are worried that you might lose the disability income if you don’t take any psychiatric drugs. Could these people find out that you are no longer taking these drugs? And is there actually a law saying that a disability income can be paid only to “compliant” patients?
If only “compliant” people with a diagnosis of “schizophrenia” can get a disability income in the US and if someone is somehow controlling their level of “compliance”, this is truly barbaric!
It is really great to know that you are now almost completely off neuroleptics. I also hope that you will be able to find a decent job, but I do hope that you will be able to completely come off psychiatric drugs even before you find a job.
Regarding marriage, I am happy to know that you now have such a relaxed attitude. What I should have emphasized more in my earlier comment is that the idea that everyone should have a partner is a product of social conditioning, though many people are not aware of it. There is no real reason to assume that people are the happiest if they are in a monogamous live-in relationship…
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Caroline, I was getting a disability income last year because of a diagnosis of “schizophrenia”, but I was not using neuroleptics. Of course I could not be open about it with my psychiatrist. I am mentioning my experience because I think that people who get a disability income should be aware that they don’t have to take psychiatric drugs.
According to many studies many (if not most) people diagnosed with “schizophrenia” are not regularly using neuroleptics. Obviously it is seen as a huge problem by mainstream psychiatry, as “non-compliance” and a sign of “anosognosia” (lack of insight). Only some of these people talk/write openly about their experiences.
Many of us do need “survival money” (I am also in favour of a universal basic income) and many people find it difficult to “disobey” psychiatrists. But neuroleptics are so harmful that we should never feel guilty if we refuse to take them – even if it means that we can’t be open with psychiatrists.
I did have a job myself, I even worked as an academic lecturer for 10 years. I now work as a book translator, but I am unable to earn enough to survive.
I have not been able to find a new steady job – both because of my own personality (I am an introverted and bookish person) and because of the sheer scarcity of job offers for people with my type of education and professional experience in my country. Fortunately my mum is able to help me (my dad is no longer alive) – otherwise I would be in a very difficult situation.
I have never been in a typical relationship, but I have realized that I should not feel frustrated because of it – that the idea that everyone (and especially every woman) should keep trying to find a “perfect” partner who will adore them is based on a myth.
I know that I am capable of love, but I feel that it is difficult to find true requited love in our times – it seems that many people are actually afraid of real emotional closeness or cultivating a very idealized and unrealistic image of love.
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Sam, he is definitely not safe to go to. I am going to choose a psychiatrist from the private sector next year. I don’t think that moving to another part of my country would change my situation – if I could, I would move to the UK where people with psychiatric diagnoses are treated much better than in Poland.
Here I have to fight even to get my (small) partial disability pension renewed – the system here is very callous. Fortunately I can count on my mum’s financial help (though she is not rich), so I consider myself very lucky. But I am sure that there are some Polish people who are in dire poverty and very distressed after being refused a disability pension despite a diagnosis of “schizophrenia”…
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Hi Evan, yes, I am going to send you an e-mail. I just wanted to quickly comment on some of the issues you have addressed. Oh, I have only now noticed that I had inadvertently copied a paragraph from your earlier comment in my own comment – sorry for that! You will hear from me soon đ
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Evan, let me also explain what I meant by my difficulties with reading and conversations on neuroleptics. I did not find it difficult to find the right words. As I said earlier, there was a horrible feeling of emptiness in my head, as if I had literally nothing to say. I felt as if all my imagination and creativity had been killed. I have never experienced this feeling when I was not on neuroleptics – and I became my old self again as soon as I started coming off my neuroleptic.
Regarding my difficulties with reading, again it was something very different from what you describe in your case. On neuroleptics I found it difficult to focus on the text I was reading. Interestingly, reading aloud was helpful. And whenever I saw a long paragraph, I simply felt unable to read it. Again, it was caused by neuroleptics and disappeared when I decided to come off them.
There was also one neuroleptic at hospital – perphenazine (Trilafon) – which actually made me completely unable to read. I just could not read the letters on a page, as if something had happened to my eyesight! So the effects I am describing were 100% caused by neuroleptics and very depressing.
I strongly feel that you find symptoms of “schizophrenia” in yourself because you believe that you suffer from this illness. But e.g. the fact that your thinking sometimes seems “not as right as it should be” to you or your difficulties with speaking in public, or even the need to leave the classroom in the past, are NOT symptoms of a mental illness.
The idea that there is a “schizophrenic smell” is astonishing and I see that Hoffer described it in an article simply as a “powerful” body odor. There is absolutely no scientific proof that there is a “schizophrenic” body odour. You know, people may actually have delusions about their own body odor! And some patients in mental hospitals have a body odor simply because they don’t wash. I remember a young man at the hospital who had an unpleasant body odor – he smelt like someone who had not washed for a long time.
As long as you believe that there is really an illness called “schizophrenia”, that you have it and that Dr Hoffer is an expert on it, you will be convinced that you have or had all kinds of symptoms of this disease, including the “schizophrenic smell”. But you may be actually pathologizing completely normal things. You may try this thought experiment: ask yourself if what you see as your “symptoms” could be explained in a different way. As an example, you sometimes left the classroom simply because you were bored or anxious?
And the freckle-like pigments you have noticed may be actually caused by large doses of vitamin B3. I encourage you, once again, to be careful because large doses of this vitamin may even cause liver damage and problems with eyesight.
Finally, please remember one thing regarding Dr Hoffer: he was not someone labelled with “schizophrenia”. He was a psychiatrist. He claimed that schizophrenia was a real illness, not a diagnostic construct. There is no reason to trust Hoffer more than any other psychiatrist đ
I generally agree with you about negative symptoms. But I dealt with fatigue, certain difficulty with reading, some difficulty with quality/quantity of relationships, depression, sudden need to leave classrooms, and so on, before ever being on pharmaceuticals. I suppose I should point out that I used cannabis and tobacco. I am aware of and support the nuanced perspective on these things….difficulty with reading due to TOO MUCH READING AND WRITING/information overload, fatigue due to lungs full of tar, paucity of speaking due to being super-reflective and a need to choose words carefully, and because I was still learning and had many Big Questions. But your description of stigma, rejection/misunderstanding, isolation, and being poor couldn’t have been said better. I decided to stop Prozac when, after normally taking it before sleep, I took it after dinner, and I could then not even read. I thought ‘this can’t be good’, so I can relate to your point on this in a thousand ways. My use of micro-dosing ketamine this year profoundly changed my thinking quality and quantity, and I once again began, and still do, read A LOT.
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Evan, thanks a lot for your reply and for telling me more about your experiences, views and research. I am soon going to respond at more length and will use your e-mail address, as you suggest.
Yes, I know that psychosis is something real. I can say it because I knew what was going on with me when I had a psychotic episode. I was “hearing voices” and had paranoid delusions for many weeks; I often “heard voices” all night, without being able to sleep! The “voices” and delusions were often terrifying.
I think that some people claim that there is no such thing as psychosis either because they have never really experienced a psychosis (with very distressing hallucinations and/or delusions), or because in their case the tendency to delusional thinking is chronic and they are not even aware that they are often not thinking in a rational way. As an example, there are people who claim that they have the resist someone’s advances, though the person is not really making any advances!
I can also add that it is definitely not true that “psychosis is always caused by psychiatric drugs”. I have never taken any psychiatric drugs or even seen a psychiatrist before my psychotic episode!
For now, let me just address three other important points: first of all, don’t you think that taking large doses of vitamin B3 may be actually dangerous? I know that this is what Hoffer recommends for “schizophrenia”, but it does not mean that it is safe.
I know that you like Hoffer’s approach, but he clearly thinks that “schizophrenia” is caused by biological factors. As you said, he does not even take into account e.g. the role of trauma. He thinks that the deficiency of vitamin B3 causes many cases of “schizophrenia”, but how does he know it? Isn’t it only a hypothesis? And let’s not forget that “schizophrenia” is in reality merely a diagnostic construct.
You mention your use/overuse of cannabis and psychedelics in the past. I am sure that these substances have largely contributed to your symptoms. People who are prone to psychosis have to be really careful and unfortunately can’t see cannabis as harmless. I even think that if you had never used these substances, you would have probably never been diagnosed with “schizophrenia”. Many people diagnosed with “schizophrenia” are or were earlier using drugs, including cannabis.
As I told you, I have noticed myself that drinking a strong alcoholic drink (it was actually Cointreau – I did not realize how strong it was and drank too much of it!) caused a weird experience which was similar to psychotic symptoms. It is not surprising because alcohol causes a rush of dopamine. So I am never saying that there is no link between the biology of our brains and psychosis, but mainstream psychiatry minimizes the role of psychological and social factors.
On a final note, yes, I am definitely going to check out Di Caprio’s docu about Szukalski – I have heard about this very eccentric artist, but have not yet had a chance to see the docu đ
Joanna
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Evan, thank you so much for sharing your own experiences with such openness – I really appreciate it. Good to hear that you now feel better than before, that you have been able to largely decrease your neuroleptic dose and that you have also been able to get off tobacco! Thanks a lot for the link to your website.
Of course I am not really surprised by the depressing similarities between American and Polish psychiatrists – and I like the fact that you compare psychiatrists to abusive parents. However, I must say that I have never expected this psychiatrist to be as impatient and rude as during my latest appointment with him! This was simply unbelievable, and I strongly feel that I was treated in this way because I angered him by my “disobedience”.
Yes, it is tragic and heartbreaking that people diagnosed with “schizophrenia” die on average 20 years earlier and society does not see it as a serious problem (of course many people are unaware of it). Shockingly, a powerful Polish psychiatrist actually claims that these deaths are caused by the impact of the illness on the central nervous system, though it is blatantly untrue: no one has ever died from “schizophrenia”!
As you can see, I don’t embrace the term “schizophrenia”. First of all, this diagnosis is often very arbitrary. I was diagnosed with “schizophrenia” after only one psychotic episode 8 years ago and my diagnosis has never been changed, though it is obvious for me and people who know me that I don’t have any “symptoms”. There are also many people diagnosed with “schizophrenia” who are using or used street drugs or who suffer from alcoholism – their “symptoms” may be largely caused by substance abuse.
There is no scientific proof that an illness called “schizophrenia” truly exists. Of course there is no denying that people can suffer from hallucinations and delusions, but it does not prove that they suffer from a life-long illness. The concept of “schizophrenia” has been criticized by many authors, among others Mary Boyle (in her book “Schizophrenia: A Scientific Delusion?”), Richard Bentall (he said: “the concept of schizophrenia is scientifically meaningless. It groups together a whole range of different problems under one label – the assumption is that all of these people with all of these different problems have the same brain disease”; he criticizes this label in a book he edited, “Reconstructing Schizophrenia”) and Suman Fernando (you will find one of the articles co-authored by Fernando here: https://www.academia.edu/8655752/Questionain_schizophrenia_as_a_diagnostic_label).
On your website you mention, among others, “disordered thinking” as a symptom of schizophrenia. Of course this is what mainstream psychiatrists say about schizophrenia. But “disordered thinking” is a very vague term; and I am wondering what actually makes you feel that you suffer from “disordered thinking” because you sound perfectly logical and coherent! Of course there are people labelled with “schizophrenia” who talk/write in a way which seems incoherent and which may even be impossible to understand, but this may actually be an effect of the damage caused by neuroleptics.
Regarding the so-called negative symptoms of schizophrenia – social withdrawal, apathy, lack of motivation etc. – nothing proves that they are caused by an illness. Neuroleptics can cause apathy and constant tiredness, and when I was on neuroleptics myself, even a simple conversation was exhausting to me because I felt a terrifying emptiness in my brain (and I am normally a talkative person!). Even a very short walk was tiring. And I was even unable to read a long paragraph in a book, though I have always loved books.
And there is nothing surprising about the fact that people labelled with a deeply stigmatizing diagnosis, people who are often socially isolated and poor, who have often been rejected by their former friends and who may feel utterly hopeless tend to feel apathy, to be socially withdrawn and lack motivation!
When people come to believe that they really have a life-long, incurable illness called schizophrenia, of course it frightens or even terrifies them and often makes them feel hopeless. In my case, I was so devastated by the effects of neuroleptics that I soon tried to find out if I really had to take them – if there was really no hope for me. I also very strongly felt that I was not mentally ill – that I had recovered from the psychotic episode. This helped me come off my neuroleptic (obviously psychiatrists were against it) and it has been one of the best decisions in my life.
I now think that I would have come off neuroleptics even if I had believed at that time that I had schizophrenia. In fact, I realize that some of the more open-minded psychiatrists might believe that my diagnosis was correct, but that I have been very lucky and that I am simply a “highly-functioning” patient. I would have no problem with it, as long as they don’t assume that I should take neuroleptics! In fact, I do sometimes have auditory hallucinations when I am very stressed, but very rarely – and I have not had them at all for almost 2 years. I also have to be careful with strong alcoholic drinks – I have once found out that in my case they cause experiences somewhat similar to auditory hallucinations (the feeling that I have no control over my own thoughts – that they are somehow entering my mind from the outside).
Finally, let me say what has helped me stay in good mental health since 2012 despite various painful experiences: I get as much sleep as I need; I eat healthily (with plenty of vegetables); I am doing things I love doing; I try to avoid any situations and people I find toxic; I avoid comparing myself to “typical” people; I go on long walks in parks, even in winter; I listen to soothing music; I don’t feel bad because of having very few friends (and none where I live) – the friends I have are real friends; I often talk/write to my closest family members (I live alone); I am also quite active in online feminist groups etc.
I wish you all the best from all my heart!
Joanna
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Evanhaar, first of all, I do believe that mental health problems exist. I just don’t believe that mental illnesses/disorders are incurable brain diseases which necessitate life-long pharmacological treatment with all kinds of toxic effects. I am against mainstream psychiatry.
Let me explain that I was personally diagnosed with “schizophrenia” in 2012, after one serious psychotic episode which was probably a reaction to emotional trauma. I decided to come off neuroleptics, though psychiatrists believed that I should take them until the end of my life. I have never had a “relapse”, but my diagnosis has never been changed.
I avoided the psychiatric system for almost 7 years. Unfortunately after losing my job I was forced to apply for a disability pension in order to have a regular income. For this reason I have to see a psychiatrist once a year. My psychiatrist (he is the one who diagnosed me with “schizophrenia” in 2012) was very impatient and rude during the latest appointment: he clearly does not like the fact that I come to see him only once a year. He actually doubled the dose of the prescribed neuroleptic without giving any explanation (fortunately I have no intention of taking the neuroleptic!).
I have to explain that I live in Poland where psychiatrists – especially public sector ones – don’t have to be polite towards patients. I was not even able to ask this doctor to stop interrupting me, to stop being rude, to stop treating me like a nuisance. I felt that he was so unpleasant because he sees me as a “non-compliant”, rebellious patient, but also because I am a woman. I don’t want to ever see him again – I prefer to pay a private sector psychiatrist next year, though I am poor.
As I said earlier, I don’t have problems with the term “patient”, but I am firmly against the approach of mainstream psychiatry towards “people/patients/clients with mental illness”. If I obeyed psychiatrists, maybe I would be now seriously physically disabled because of tardive dyskinesia or even dead, though I am only 40. And I would feel like a zombie. People diagnosed with “schizophrenia” die about 20 years earlier on average – largely because of the effects of neuroleptics and because of the stress and poverty caused by stigmatization (sadly many of them also smoke…).
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Evanhaar, let me first make it clear that I have personally refused to be a “patient” or a “client” of the psychiatric system. I also think that it is very toxic to see any of these labels (“patient”, “client”, “service user”, “consumer”) as a part of one’s identity – or even as its central part.
One of the cruelties of modern psychiatry is that it encourages many people with psychiatric diagnoses to believe that their main or only identity is being a user of the psychiatric system – that this experience defines their whole identity. This is disguised as harmless, but it causes untold damage.
However, I don’t find the term “patient” problematic when it is used in the same way as in the case of people with physical health problems who seek medical help. As I said earlier, in the psychiatric context “client” (just like “consumer” or “service user”) is merely a euphemism, a way of “politely” avoiding hurtful and deeply stigmatizing words like “mental illness”. “Client” may seem neutral and dignified, but in reality it is used to describe people who supposedly need psychiatric care and treatment until the end of their lives – unlike “normal” people.
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Evanhaar, thank you for this very interesting comment. I would say that terms like “service-user”, “consumer”, “client” etc. are ugly euphemisms, used in order to avoid the terms “psychiatric patient” or “a person witb mental illness”. As you rightly point out, the terms “service-user”, “consumer” or “client” are never used in the case of patients who don’t have psychiatric diagnoses. And these terms indeed imply a permanent role/identity, without the prospect of a possible recovery.
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Sam, you are totally right. This is a very interesting interview, but it is clear that Tanya Luhrmann believes that “schizophrenia” is an objectively existing illness. It is also striking that she mentions a man who came off neuroleptics and later “disappeared into the anonymous world of the homeless” – she seems to imply that this is what awaits people diagnosed with “schizophrenia” who stop taking their “meds”…
She earlier says that an Indian woman she met “would look pretty ill” according to standard psychiatric criteria, but in reality was “really functional”. It is surprising that such observations have not made Prof. Luhrmann much more critical towards psychiatry, its concepts and its methods.
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You have a great point there đ
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Rich, thank you for sharing your story with us. You are actually doing something very important and beautiful – much more important and beautiful than many paid jobs. I am sure that there are women who would be ready to accept you just as you are – there are many women who simply look for love and companionship, for a good, caring, sensitive man. And if anyone asks you “What do you do?”, you could say that you are a carer and an activist!
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NotCrazyAfterAllTheseYears, I understand you so well. So many people assume that there is something wrong with those who simply love solitude… This idea that everyone should crave and enjoy “socializing” with coworkers etc. is very oppressive. I understand your feeling that you were losing time you needed for other things; this is one of the reasons why I have always avoided all kinds of work social events. And I, too, have been using long walks for therapy (and exercise) for years!
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Very good advice, oldhead, but the Asperger’s syndrome diagnosis may be very helpful in my attempts to prove that I deserve to get disability money – and if I have to explain to people why I am leading a reclusive life đ
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Sam, I totally agree with you. Why should we assume that “normal”, “healthy” people should be capable of enduring huge amounts of stress without ever “crumbling”? Many people are not aware of the impact of stress on their mental and physical health. We live in a world where people are expected to be like robots – constantly full of energy, productive, enthusiastic and ready to take up new challenges… Unsurprisingly, many people’s minds and bodies end up being damaged under this pressure.
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Very true, Sam! I find today’s cult of workaholism and generally of ceaseless feverish activity (you put it so well) both bizarre and depressing. People need time to think, to interact with their fellow humans, to connect with nature… It seems that many people now live without ever really stopping to think about their lives.
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KateL, I am so sorry that you have suffered serious memory loss because of ECT. It is truly shocking that the psychiatrist actually later callously claimed that you had a personality disorder!
I am happy that you have stopped feeling guilty because of being on disability, and I hope that the shame will also soon disappear. There is absolutely nothing wrong with being on disability. The idea that those who don’t have a job should be ashamed of themselves is profoundly toxic and reflects the cruelty of the world we live in…
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I am glad that you found my story interesting! What I meant is that the idea that people diagnosed with schizophrenia should all strive to have a paid job is inherently toxic. For many of them this is simply an unachievable goal, especially if they disclose their diagnosis to potential employers. And many jobs in today’s societies are much too stressful for people prone to psychosis and paranoia… Finally, psychiatric survivors frequently have very limited social networks, which makes it even more difficult for them to find paid employment.
There are all kinds of meaningful things one can do without having a paid job – including helping other people. This winter I was able to help my brother who had been put on a locked psychiatric ward because of suicidal thoughts. I was able to visit him every other day in hospital and I stayed for a month with him after his release. I would not have been able to do it if I had a job.
My life is filled with intellectual activity (I even translated a book last year for a publisher), and I also try to support and encourage other people whenever I can. I am aware that I am actually saving the public health care system plenty of money thanks to my recovery and my decision to get involved with the psychiatric system only when it is unavoidable.
I think that we should question the assumption that people are “productive” only when they are in paid employment. Care work and domestic work is very often unpaid, though it is of crucial importance. Intellectual and artistic work, too, is often unpaid or badly underpaid.
As I explained earlier, I did try to find a job despite my schizophrenia diagnosis – and I was unable to reach this goal despite my PhD, my work experience and the fact that I did not disclose my diagnosis. I also tried to get admitted to a course in Addiction Counselling, but I was not admitted – for reasons which have never been revealed to me.
I refuse the idea that I should feel bad because I am not in paid employment… If I had kept desperately trying to find a job without having any source of income, this would have been devastating to my mental and physical health. Accepting a job which might have triggered a breakdown would have been only slightly less devastating.
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What a deep and brilliant song! “I’ll consume my consumers, with no sense of humour/I’ll give you a uniform, chloroform/Sanitize, homogenize, vaporize you”… So true! I have always hated so much the ugly euphemism “consumers”. I was certainly not a “consumer” when I was forcibly drugged for more than a month in a psychiatric hospital.
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I was diagnosed with schizophrenia 8 years ago, after a psychotic episode (I have never had a so-called relapse). I completely reject this diagnosis and I came off the prescribed neuroleptic as soon as it was possible.
I am a PhD holder and I worked for 10 years as a university lecturer (I returned to work after my psychotic episode, without telling anyone at work about my diagnosis). However, I found this job very stressful and I felt extremely isolated in my workplace. I am currently in the process of being diagnosed with Asperger’s syndrome.
I have not been able to find a new job after my university job contract expired (I live in Poland where even a PhD does not guarantee a decent job; I could try to find a job as a schoolteacher, but I know that this job would be much too stressful for me). I finally decided to apply for a disability pension last year on the basis of my schizophrenia diagnosis.
I now feel happy and peaceful, though unfortunately this year I have to reapply for the disability pension despite my diagnosis. (In fact, in Poland – unlike in the US – even people diagnosed with schizophrenia have to prove, again and again, that they are unable to work.) I am worried because my psychiatrist (whom I have not seen for a year) might find out that I have not been taking neuroleptics. I know that I don’t need these drugs and that they are very toxic.
I think that it is important to realize that some people can be perfectly happy without a job. My life is not boring or empty; I now feel so free and I can do what I love. I must also add that I feel much better with people from whom I don’t have to hide the fact that I am a psychiatric survivor. My best friend is also diagnosed with schizophrenia (like me, he is not taking neuroleptics).
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Ann, I had a very similar experience with a psychiatrist seven years ago. He told me after one conversation with me (it was the only time when he saw me) that I did have schizophrenia and that if I stopped taking neuroleptics, I might develop “drug-resistant schizophrenia” and need electroshocks.
He told me that I did have schizophrenia, though I was no longer having any psychotic symptoms and though I was working at a full-time job. He did not realize, however, that – like you – I was secure enough not to listen to him and was actually no longer on neuroleptics while talking to him.
I have had only one psychotic episode (in 2012). Since that time I have never had a so-called relapse, though I have not been taking any psychiatric drugs since November 2012. I am so happy that I did not listen to psychiatrists in 2012!
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I, too, would like to thank John Hoggett for his comments. Those who are against possible future Covid-19 vaccination forget how many people this virus has already killed.
I have been personally vaccinated against tuberculosis, diphtheria, tetanus and pertussis (this was mandatory in my country) and also against yellow fever (before a travel to Africa). What harmed me was not any of these vaccines, but an anti-malaria drug called Malarone which can cause auditory hallucinations (“voices”).
I can’t really understand why many people are now so afraid of vaccines – but it must be largely because all kinds of weird “theories” can be now very easily spread thanks to the Internet.
I am firmly against forced psychiatric drugging, but this does not mean that I also reject modern medicine and the idea of mass vaccination against dangerous viruses and bacteria.
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Rachel, the Spanish flu had a fatality rate of 2.5%. The COVID-19 fatality rate is currently said to be about 3.4% and it is even higher in people over 60. And people were also told to isolate during the Spanish flu epidemic: http://www.vox.com/policy-and-politics/2020/3/24/21188121/coronavirus-covid-19-social-distancing-1918-spanish-flu .
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In Nazi Germany the “schizophrenia” label was not a way of silencing dissenters. The Nazis simply wanted to exterminate all people diagnosed with “schizophrenia”. The victims of this genocide were psychiatric patients – not dissenters.
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Bippyone, you don’t seem to see how fast the numbers of deaths are rising because of this pandemic. And if lockdowns had not been introduced, these numbers would be much larger. Even in the UK it is already more than 1400 deaths – twice more than only 3 days ago – and the number is still rising!
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Air pollution is down etc., but at what cost? More than 37,000 people have died and so many more will die – what about all these lost lives, all these people who could not breathe, all these people who died because there were not enough respirators? And I don’t think that the pandemic will be enough to bring real global and lasting change in attitudes towards the environment!
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What helped me was learning not to worry about what other people think about me and my life; doing things I love and supporting struggles I find important (the struggle against coercive psychiatry is one of them); trying to find people who accept me as I am; learning to appreciate more all the good things in my life instead of suffering because of unachieved goals or dreams.
I have to disagree with Bippyone that life is worth living only if we are loved. Those of us who feel truly loved by many people are lucky. Some people do/did not feel loved even by their own parents… I personally started feeling much more free and much less frustrated when I realized that I might never find someone who would love me in a romantic, passionate way and that I should not feel like a failure only because I have not found such a person.
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oldhead, too little is known about this virus to draw the conclusion that it can be transmitted only through coughing or sneezing. http://www.npr.org/2020/03/28/823292062/who-reviews-available-evidence-on-coronavirus-transmission-through-air
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Rachel, where have you read that “even frail octogenarians in nursing homes are more apt to beat the bug than die. 90% survival odds in worst case scenarios”? Very large numbers of people have allegedly already died in care homes in France and Spain. I have read that according to experts up to 100,000 people may die in French care homes.
I think that the fatality rate for frail octogenarians is much higher than 10% – and even higher if they live in care homes. Let’s remember, too, that many people die because there are not enough respirators.
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Tina, could you post any links (they can be in French) proving that in France “people with a psychosocial disability who are infected with COVID-19 have been turned away from mainstream hospitals and treated instead in psychiatric institutions or in mobile hospitals that lack the necessary infrastructure”? This is horrible!
Thank you!
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And I think that one’s chances of reintegrating mainstream society after an episode of psychosis are much higher than you believe. The problem is that so many people don’t realize that recovery is perfectly possible, that the very concept of “schizophrenia” has no scientific validity and that it is absolutely not true that people with this diagnosis have to take antipsychotics until the end of their lives. When people see themselves as incurably mentally ill, recovery is very unlikely.
Another problem is the persistent stigmatization of people diagnosed with “schizophrenia”. The label is so stigmatizing that it has a very damaging impact on a person’s self-esteem (for some years I was not even aware how damaging it was to my own self-esteem) and life. People diagnosed with “schizophrenia” are still very often discriminated against by society if they are open about their diagnosis or their stay in a mental hospital.
And when people diagnosed with “schizophrenia” don’t fully reintegrate mainstream society in the sense of having a job, getting married etc., in many cases it is not because their mind is broken, but because leading a “typical” life would be much too stressful for them and because some of them have never found socializing easy… I personally think that my experiences with being frequently rejected and excluded by my peers and co-workers have not only contributed to my psychotic episode, but also explain why I now don’t feel ready to work in jobs where I may again feel painfully rejected and excluded by other people.
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yeah_I_survived Unfortunately society in these times was also very harsh, inhumane and cruel… The author mentions so-called workhouses: English people who were deemed fit to work, but were unable to support themselves were routinely sent to these institutions where they had to live and work in horrible conditions.
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neo_liberalism_say_what, many thanks for your comments! I was very surprised by the author’s implication that the rate of recovery after the first episode of psychosis is very low even if people are not on antipsychotic maintenance treatment…
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Another quote from the article (page 10): “The Jamaican contribution to GMH incorporates the evidence-based Western biomedical psychiatric models but adds to them our decolonization experience of the 50-year post independence comprehension from colonial Britain.” So the Jamaican model does NOT reject the biopsychiatric approach…
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Unfortunately – as Boans has pointed out – neuroleptics are part of the Jamaican model of mental health care. In his article, Prof. Hickling quotes an author who writes that (compared to Britain) in Jamaica:
“There seems to be a much greater willingness on the part of families and neighbors to cooperate with the services,locate people when they need help and make sure they take their medicine. Itâs accepted as part of the communityâs responsibility”. (one can download the whole article for free here: http://sci-hub.tw/http://doi.org/10.1177%2F1363461519893142).
So making sure that patients take their “meds” is, sadly, part of this model – and Prof. Hickling clearly has no problem with it…
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survivingthesystem, I am very sorry to hear about your experiences. And I totally agree with you: I, too, felt dead inside on antipsychotics. I was unable to have a normal conversation. I was unable to write in an interesting, imaginative, creative way. I found reading tiring and I was unable to read a long paragraph in a book – on Abilify I was scared whenever I saw a long paragraph, though I have always been a book lover!
I also suffered from horrible akathisia which made even commuting to and from work quite stressful. And at work I was happy that thanks to my job (university lecturer) I was able to walk in the classroom in order to cope with my akathisia.
I felt an immense relief when I came off Abilify – I felt that I became again my old self!
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Rosalee, of course I agree with you that psychiatric labels very often lead to discrimination by the health care system. Is it possible to get re-diagnosed in Canada? In my country, Poland, fortunately doctors who are not psychiatrists don’t seem to be aware of my diagnosis (“paranoid schizophrenia”); and even if they were, I know where and how to check if I am getting the right treatment for a disease, I know how to stand up for my rights, and I know what to do if I am ever discriminated against.
It seems to me, however, that Sam was talking about the impact psychiatric labels have on people’s self-esteem – about “shaming” by psychiatrists – and this is what I commented on.
In my case, my “paranoid schizophrenia” diagnosis really damaged my self-esteem for some years, though I quickly rejected this label. But I am sure that it would be much more damaging if I had not realized many years earlier that people’s opinions about me did not define me…
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Sam, it is perfectly possible to free oneself from the fear of being “the loser”. It is perfectly possible, too, to stop worrying about the opinion of people who want us to feel bad about ourselves.
I have personally often faced rejection from my peers since I was a little girl. My being a very academic, bookish and introverted girl was certainly one of the causes of this rejection. I have never been “popular” and I just accepted it instead of trying to please people who disliked me, rejected me, and maybe also felt threatened by me.
I have gradually stopped worrying about what narrow-minded, intolerant people might think of me. Why should such people have power over me? I think that my independence was one of the reasons why I found it very easy to disobey the will of doctors who thought that I was “mentally ill”, though they knew virtually nothing about me and my life.
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DShanin, you did say in your comment: “After antipsychotics, brain becomes more susceptible to sounds of voice. This makes a person safer for society.”
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DShanin, what makes you assume that people are prescribed antipsychotics in order to be “safer for society”? I am always depressed by the assumption that people who have experienced psychosis are dangerous. I was prescribed antipsychotics, though I was never violent and no one was afraid of me. I was prescribed antipsychotics only because I had a psychotic episode. I have never caused any trouble to anyone since coming off these drugs…
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Sam, you are so right! I think (hope) that psychiatry is unable to stop the processes leading to greater respect for individuals’ rights. I hope very much that forced drugging will be increasingly recognized as a violation of basic human rights.
One of the problems is that many people seem to be unaware that many patients are literally forced to take psychiatric drugs (even when they are very quiet on the ward and don’t violate any rules!). Another problem is that many people generally know very little about those who have experienced psychiatric incarceration and are often ready to believe all kinds of negative stereotypes.
In consequence, there is little or no compassion for people forced to take these drugs in mainstream society. The assumption seems to be that they “need” these drugs – and/or that they are so different from “normal” people that it is difficult to relate to them and their experiences. The power of stigma continues to silence countless people who know what it’s like to be on a locked ward…
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Sam,
Yes, in a way he admitted that the drugs might not work, but obviously what he meant is that they might not work for “uncooperative” patients who don’t want to obediently take the “meds” they were prescribed! It’s a pity that I didn’t have duct tape on me đ
In my country (Poland) ECT can still be used as a treatment for schizophrenia if neuroleptics don’t work. Fortunately even in Poland even involuntarily committed patients always have to agree to ECT, unless doctors believe that their is a direct threat to the patient’s life. This was one of the reasons why I was not scared when the psychiatrist mentioned ECT!
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Steve, I totally agree with you: most psychiatrists accept only “recovery” on their terms, that is, when a patient agrees to take neuroleptics until the end of his/her life and becomes a compliant member of society! The way John Nash’s story was distorted in “A Beautiful Mind” is simply disgusting, though not in any sense surprising…
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Rachel777, it sounded indeed like a threat, and I am so glad that I already knew at that time what to think of it!
I fully agree with you that people who recover make most psychiatrists feel very uneasy. I agree, too, that many (if not most) psychiatrists are not sadistic. However, it is difficult for me to say if they really believe that “schizophrenia” is a debilitating brain disease etc., or if they are simply afraid of challenging biopsychiatric beliefs.
Another psychiatrist claimed that I had “disorganized thinking” and was unable to explain what he meant. Until today I don’t know if he really believed that there was something wrong with my thinking because of my diagnosis, or if this was something he felt he had to say as a psychiatrist talking to a patient with “schizophrenia”.
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Many thanks for sharing your story, Laura. I am very sorry to hear that you are still forced to undergo injections of an antipsychotic. The forced drugging is one of the things which make me very angry about psychiatry.
I am actually almost the same age as you (I will be 40 in June), and I was diagnosed with “schizophrenia” in 2012, after only one psychotic episode (I was hearing “voices” and I was very paranoid). I was involuntarily committed to a psychiatric hospital for more than a month. I decided to come off neuroleptics some weeks after my release from the hospital. Fortunately no one had the right to force me to take them again. I have never had another psychotic episode.
I don’t currently have a regular job (I work as a freelance translator and I get a disability pension thanks to my diagnosis), but I feel very happy and I have been leading a completely normal and fulfilling life since my stay in the mental hospital in 2012.
I am very impressed by your openness and by what you have achieved, and I hope very much that you will find a way to free yourself from neuroleptics. I wish you all the best.
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Rachel777,
I actually had a very similar experience with a psychiatrist in 2012. I wanted my schizophrenia diagnosis reevaluated (I had fully recovered from a psychotic episode and I knew that I no longer had any hallucinations or delusions).
The psychiatrist (quite an unpleasant man) asked: “Do you always talk so much?” When I said that I did, he claimed that I might have not only schizophrenia, but also “an affective disorder”. He said that if I did not keep taking my “meds”, I could develop “drug-resistant schizophrenia” and need electroshocks.
Unbeknownst to him I had already come off Abilify (without any difficulties). For almost 8 years I have stayed away from all kinds of psychiatric drugs despite my diagnosis. I was never hospitalized again. This psychiatrist tried to scare me into being a compliant patient and clearly found me annoying!
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Fiachra, great to know that you, too, came off neuroleptics a long time ago – and I fully agree with you that “schizophrenia” does not exist! I have recently noticed that some young men who have been using street drugs are diagnosed with “schizophrenia” in my country. Sadly, many of them think that they really suffer from a severe mental illness and become long-term psychiatric patients…
I have recently had to tell my own brother who had spent some time on a locked ward because of suicidal thoughts that he, too, might one day be diagnosed with “schizophrenia” if he is not careful…
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I totally agree with you!
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And – very importantly – this new drug can also cause tardive dyskinesia. The prescribing information leaflet even states after mentioning TD: “In patients who do require chronic treatment, use the lowest dose and the shortest duration of treatment producing a satisfactory clinical response. Periodically reassess the need for continued treatment.” (page 2 here: http//www.intracellulartherapies.com/docs/caplyta_pi.pdf).
But we all know that people with a diagnosis of schizophrenia are usually put on neuroleptics for life… I came off a neuroleptic about a month after my first and only psychotic episode in 2012 (I was diagnosed with “schizophrenia” after this episode). Coming off the neuroleptic has been one of the best decisions in my life. I have never had a psychotic episode again despite my diagnosis…
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You are so right, Steve! “All volunteers with schizophrenia were on antipsychotic medication (mean [SEM] chlorpromazine-equivalent doseâ=â443.5 [89.6]âmg/d” http://www.nature.com/articles/s41467-019-14122-0 .
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Kindredspirit, unfortunately the main problem with âantipsychotics” is that many people are literally forced to take them. I did not beg to try something – like many others, I was forced to take neuroleptics when I was involuntarily committed to a mental hospital. This is one of the most barbaric aspects of psychiatry!
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Dear Vitas, thank you so much for sharing your powerful, deeply moving and excellently written story. I can relate so much to your experiences because my only psychotic episode, 7 years ago, was clearly caused by a relationship breakdown.
I started “hearing voices” when I felt rejected by a man I loved. I was involuntarily committed to a mental hospital and put on neuroleptics – with horrible side effects, especially in the case of Trilafon (perphenazine) – and I experienced the dehumanizing atmosphere of a locked ward. I did not receive any psychotherapy at the hospital where I spent more than a month – I was kept there even when I no longer had any symptoms.
Fortunately I decided to come off neuroleptics a month and a half after being released from the hospital and I have never used them again. I have never had another psychotic episode, though psychiatrists claimed that the one I had experienced was caused by a chemical imbalance in my brain… I wish you all the best and thank you for being so open about your experiences.
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Thank you for explaining your situation, maradel. Fortunately I know for sure that doctors don’t know about my psychiatric diagnosis. And even if a doctor finds out about it one day, I am not worried because after my psychotic episode I had absolutely no contact with the psychiatric system for more than 6 years – doctors would probably assume that I must have been misdiagnosed or that I am a case of full recovery from schizophrenia.
No one knew about my diagnosis in my former workplace – I did not tell even my boss about it. Wherever I go, no one knows that I was once an involuntary mental patient.
In my own experience, some doctors have been clearly impressed by my education level and outspokenness. The head doctor at the mental hospital even lent me a book on the history of psychiatry and was very respectful towards me. Another doctor (a non-psychiatrist) not only likes me and respects me, but has once even shared with me an article from a medical journal! So fortunately there are doctors who don’t feel threatened by women with doctorates…
At the same time, I have to admit that I am trying to avoid conflicts with doctors unless I strongly feel that I have to stand up for myself. As to compliance, in my opinion a certain level of compliance is very wise in psychiatric hospitals. Thanks to my compliance I was not put into restraints and I did not undergo forced injections. Thanks to my compliance I was not really traumatized by my stay in the mental hospital. Sometimes it’s better to be compliant – it can even save our life…
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Great comment! So good to know that you got out of the system of psychiatric drugging!
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I understand, Rachel, but still they have no right to yell at you – it increases your stress, and I don’t think that it will make you stop… Maybe you could try to replace scratching by vigorously massaging your scalp with your fingers? But such habits are not unusual in any sense – my mum used to bite her nails until they bled when she was a young girl…
I think that your family members don’t realize that they are hurting you emotionally. Maybe they have not experienced healthy, non-abusive love themselves!
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Rachel, how can your relatives yell at you? They are behaving in a very abusive way and they should stop thinking that your “illness” gives them the right to abuse you. This is emotional abuse of the worst kind! I would stop visiting people who are so abusive!
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maradel, as someone diagnosed with paranoid schizophrenia I definitely don’t think that the diagnosis in itself is worse than the damage caused by psychiatric drugs. I got my diagnosis more than 6 years ago, but I am able to lead a normal, happy and free life because I was on neuroleptics only for a short time.
Very few people know about my diagnosis, so it is not really stigmatizing to me. I am very glad that I never told anybody in my former workplace that I had been diagnosed with schizophrenia. Keeping this secret has been much easier to me than facing the consequences of “coming out”…
If your disability results from failed surgeries, why did you have to reveal your psychiatric diagnoses when you applied for disability? This is something I feared myself in the past – the possibility of being treated worse than other patients because of my psychiatric diagnosis. I am so sorry about the way you are now treated by doctors! But doesn’t their attitude change when they find out that you have two doctorates? (I am sure that my own PhD and my academic job made doctors and nurses treat me better when I was at a psychiatric hospital).
I think that migrating to another country is a great idea in your situation – wonderful that it’s possible for you! And you are right: fear of those who are different is surely one of the main reasons why “mentally ill” people are treated so horribly!
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yeah_i_survived: Like you, I am pessimistic about Hollywood. However, “55 Steps” is not a Hollywood movie – it is a German-Belgian coproduction and it will be released only in select cinemas in the US. I really don’t think that such a film could have been made in today’s Hollywood!
As to actors, let’s not forget that Kirk Douglas wanted to turn “One Flew Over the Cuckoo’s Nest” into a film for years – and his son Michael co-produced it. So yes, there are actors who genuinely care about important causes, including the cause of psychiatric patients and survivors…
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A very good point!
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You are so right, Rachel! I am really fed up with the way “mentally ill” people are still portrayed in movies. I have even recently seen a seemingly well-intentioned indie movie where a woman who heard voices was a scary character who had killed her own son…
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I agree, Steve, and thanks for the facts on John Nash. I was also able to “stay under the radar” – I stopped any involvement with psychiatrists after coming off neuroleptics in 2012 and since that time I have always been able to stay balanced, no matter what happens in my life. I think that those who want to suppress the truth about Nash are also acting on the assumption that the “mentally ill” don’t know what is good for them and have to be protected from any “dangerous” knowledge…
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Steve McCrea, I fully agree about Jesus đ I am sure that many psychiatrists would diagnose him with severe mental illness…
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I agree with you: it was very impressive that Eleanor was able to live on her own, talk to lawyers, and generally live an independent life. And – very importantly – despite her traumatic experiences and suffering the film portrayed her as a happy, cheerful person who “every day found something in her life to enjoy, something to be grateful for”. In this sense the film carries a very uplifting message. I may have been too harsh in my earlier comments, though I continue to feel that this important and heart-warming film has some major weaknesses. I hope that one day many films will make it clear that the boundary between “mentally ill” and “normal” people is wholly artificial and incredibly harmful, and that neuroleptics are always toxic and debilitating and should never be used for a long time (if at all). Nowadays one really does not need a lot of money to make a film without stars or a documentary, and hopefully we will see many independent films challenging mainstream views on mental health issues.
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Rachel, you believe that continual patronizing and put downs can cause childish behaviour. But was the real Eleanor childish? We don’t know what she was really like and if she would be happy with the way she was portrayed in the film…
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Frank, I agree with you. I know that John Nash was not happy with the erasure of this crucial fact in the film about him. Mainstream elites seem to be scared at the prospect that “schizophrenics” may be encouraged to stop taking “their meds” by a film! Fortunately many people know that these “meds” are poison…
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Frank and danzig666: I fully agree with both of you!
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Rachel777, you are entirely right! And Eleanor Riese allegedly developed her “schizophrenia” after suffering childhood meningitis http://law.justia.com/cases/california/court-of-appeal/3d/209/1303.html . She even says near the end of the film “That was when they put the shunt in my head… to drain the water off my brain after I had spinal meningitis. Yeah. Before that, I wasn’t retarded, and nobody called me mentally ill. I was just like everybody else.” But this does not make her lawyer conclude that maybe Eleanor has never had any mental illness!
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Concerned Carer: I was also probably hoping for too much! Obviously it is great that such a film was made. I think, however, that one could make a much better, much more powerful, much less patronizing and much less predictable film about Eleanor Riese. Powerful, uncompromising and non-patronizing films about “mentally ill” people are being made – the Romanian film “Beyond the Hills” (2012) by Cristian Mungiu is a great example. Unfortunately the people behind “55 steps” were much too Holywoodian in their approach and did not question many of the widespread assumptions about mental health issues and mental patients.
Helena Bonham Carter surely put a lot of effort into playing her character. The problem is, however, that she has clearly her assumptions about “schizophrenics” – that they are people who don’t look, don’t behave and don’t talk like “normal” people; who can say something considered rude out of the blue etc., who have their obsessions etc. This myth perpetuates prejudice towards psychiatric survivors, but the truth is very different. I have a close friend who was diagnosed with schizophrenia many years ago and who is not using neuroleptics; I was literally shocked when he told me about his diagnosis – it was impossible to guess from his behaviour and speech that he had been a mental patient (like me). By the way, he told me that he knows some people who have been clearly damaged by neuroleptics.
I would say that Helena Bonham Carter was trying too hard to transform herself into a “schizophrenic”; but there is no need for any transformation, unless we assume that a “schizophrenic” is somehow deeply different from “normal” people. I feel that Bonham Carter (unsurprisingly) wanted to show the range of her acting skills, her capacity for metamorphosis, but it came at a heavy cost: it was impossible for me to identify with Bonham Carter’s Eleanor, and the character did not make me think of any real people diagnosed with schizophrenia, but of Dustin Hoffman’s character in “Rain Man” or Sally Hawkins’s character in “Maudie” – two other excellent examples of actors doing their best to metamorphose themselves into an “odd” person.
Isn’t it striking that the reviewer from “Hollywood Reporter” http://www.hollywoodreporter.com/review/55-steps-film-review-tiff-2017-1036523 wrote: “The actress certainly dresses, speaks and moves as if she were in one of her former romantic and professional partner Tim Burton’s grand guignol Gothics. And her snarly demeanor and exaggerated body movements are so shamelessly self-indulgent that they demean the very person the movie aims to honor”?
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I agree with Sera Davidow that it is an important film. However, I found it deeply disappointing, and in my opinion it does not truly challenge the status quo. The people who made the film are not against neuroleptics: Helen Bonham Carter believes that Eleanor Riese simply needed “the right amount of medication” (http://www.huffingtonpost.co.uk/entry/helena-bonham-carter-55-steps-interview-eleanor-riese_uk_5bc4f660e4b0fed45beb93d7). The film does not show or suggest that Eleanor Riese came off or wanted to come off neuroleptics! Eleanor’s diagnosis – paranoid schizophrenia – is not even once questioned in the film.
I found Eleanor’s portrayal very patronizing and cringeworthy. She is depicted as childish and even arrested in her psychological development – an exuberant little girl in a woman’s body – obsessed by her rosaries and completely asexual. The film offensively implies that mental patients are “children in adults’ bodies” and intellectually disabled. It will surely not convince “normal” people that mental patients are humans just like them!
Interestingly, the film never asks the question WHY Eleanor became psychotic and what made her completely suppress her sexuality. I know very little about the real Eleanor Riese, but she may have been a victim of sexual abuse or some other trauma before she became psychotic – the film never even suggests such a possibility because it chooses to portray “schizophrenia” as a mysterious brain disease…
I was also annoyed by the film’s ending. Eleanor Riese was killed by neuroleptics at the age of only 47. And because of neuroleptics she had to use a catheter to urinate for many years – I once had a catheter inserted at a hospital and I know how it hurts… But the authors of the film want us to feel good when the lawyer receives the award after Eleanor’s death – they want us to believe that this is actually a story with a happy ending!
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It’s very sad that (in spite of everything she has found out) Helena Bonham-Carter says that Eleanor Riese started feeling better when she came âonto the right amount [of medication]â… So she is not against neuroleptics – she is merely against over-drugging. It is true that the film does not suggest in any way that Eleanor came off neuroleptics. And I guess that the other people behind the film have the same approach as Bonham-Carter… You write that the screenwriter, Mark Bruce Rosin, explained that the film couldn’t fight all the issues, but is there any proof that he knows that there is no âright amountâ of a neuroleptic? And can one find somewhere online Rosin’s explanations on the way neuroleptics were portrayed in the film?
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yeah_I_survived: These “Christians” don’t know their Bible – Jesus healed a man who would probably be a mental patient today! The man lived in the tombs and cut himself with stones… One can find the story in Mark 5:1-20 and Luke 8:26-39.
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Just an update on my story: I have never had a relapse of psychosis, though I have not been taking any psychiatric drugs for more than 4 years and though I have had some difficult experiences in recent years. I would like to emphasize that I have never had psychotherapy – so it’s perfectly possible to recover even after a full-blown psychotic episode without recourse to psychotherapy.
As to my friend (we later renewed e-mail contact), he has never said anything on my psychotic episode, but this does not surprise me: it is very difficult to discuss such taboo experiences.
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In my case psychosis developed before I was put on psychiatric drugs and was clearly linked to a very painful personal experience. I had a psychotic episode in the summer of 2012 and I have never had a “relapse” (I have not been on any psychiatric drugs since mid-November 2013) so my psychosis was not caused by a long-term mental illness. My story proves that some people can become psychotic under the influence of trauma – and not because of a “psychiatric drug cocktail” served by cynical psychiatrists – and later make a full recovery. I think that such cases would be much more frequent if many people had not accepted the idea that mental illness is incurable and has nothing in common with a person’s experiences …
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Thank you very much for your reply and your kind words, Steve ! Of course, I fully agree with you: there is such arrogance in some people’s belief that they “know” what it means to hear voices or to have delusions, even though they have never experienced it themselves. So many psychiatrists and other “experts” never really listen to the “mentally ill” and assume that they are all the same – strange and deeply miserable individuals with malfunctioning brains who have to be on neuroleptics “for their own good” …
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A correction: my episode was almost 4 years ago, in August and September 2012. I was diagnosed with schizophrenia at that time, but fortunately I was rebellious enough to reject this life-shattering diagnosis and to come off neuroleptics. As I said earlier, I have never suffered another “psychotic” episode.
The voices did not return even when my father was dying from brain cancer at the end of last year. I am so happy that he knew until the end that his daughter was a happy and peaceful young woman who was wise enough not to believe what psychiatrists had told her and resilient enough to emerge as a stronger, more empathetic and more loving human being from a psychiatric hospital where she had been involuntarily committed …
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The idea that people who hear voices have a “defect” which makes them unable to recognize their voice as their own is totally unconvincing to me. First of all, how to explain the fact that some people – like me – have had only one episode of voice hearing in their life, even though they are not using neuroleptics ? I had such an episode for more than a month almost 3 years ago – if I have a “defect” in my brain, why do I no longer hear voices ?
Secondly, I sometimes heard more than one voice (Eliezer Sternberg and Louis Gould would be unable to explain it) and the voice I usually heard sounded like the voice of a real person – someone whose behaviour contributed to my episode of voice hearing. The voices were also often saying very shocking or even terrifying things, things which were source of deep torment and most probably came from the depths of my unconscious. I was certainly not merely “talking to myself” and being unaware of it because of a “defect” in my brain !
Voice hearing, especially when it is related to painful or even traumatic experiences, is a far more complex phenomenon than Sternberg and Gould believe. Like so many others, Sternberg and Gould want others to believe that people who hear voices have malfunctioning, deficient brains. Like so many others, they do not even mention trauma and other psychological causes of psychotic experiences. They shamelessly perpetuate devastating biopsychiatric myths on “mental illness” and “the mentally ill”.
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