Thursday, December 8, 2022

Comments by Joanna Badura

Showing 100 of 233 comments. Show all.

  • 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

  • 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 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.

  • 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.

  • 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 can’t 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.

  • 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, “Most academics don’t challenge the powers that be’ and “only some academics are independent thinkers”?”

    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.

  • Birdsong, you say “She has every right and reason to be afraid” and “if she does take on a full-frontal attack too soon, she’ll 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 can’t 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.

    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.

  • 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.

  • 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 I’m 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: “It’s 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? That’s the debate that I’ve been hearing, and that’s 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 don’t 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”…

  • 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 they’ll be OFF medications!”, 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.

    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.

  • 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 dad’s 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.

    I, too, wish you the best!

  • 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 “don’t know and wouldn’t 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.

  • 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 isn’t 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.