Wednesday, November 14, 2018

Comments by tom jones

Showing 79 of 79 comments.

  • Thanks for posting this personal experience. It is wonderful that you have people to share these things with.

    “alienation from many people I have considered family”
    This is really hard. Chosen family, close friends, and other supportive people can help a lot.

    Best wishes to everyone for this holiday season.

  • If I might go out on a limb a bit, it seems to me that Jonathan is advocating for de-escalation over criminal punishment in event of assault.

    Assault, if established at a trial, is a crime. I’m all for de-escalation in tense situations. I believe that Jonathan is saying he believes that hospital staff are more prepared for these situations than police.

    However, what concerns me is the lack of trial or any independent review. Do hospitals have an independent party review all the video footage of these incidents? Is it ever established whether they were acting in self-defense to a system that threw the first stone and instigated the use of force? The standard of self-defense must be applied equally to all parties involved, or application of the law is discriminatory.

    Instead, these ‘assaultive’ patients, instead of having a trial or any kind of independent incident review, are punished with increased doses of drugs regardless of who started the fight. Whether these people initially consented to take drugs at some dose, is irrelevant. If the dose is increased without explanation or consent it constitutes force and is punitive.

  • Jonathan,

    I appreciate your post and the empathy that you have for people experiencing distress.

    Wikipedia “Violence”: anything that is turbulent or excited in an injurious, damaging or destructive way, or presenting risk accordingly, may be described as violent or occurring violently, even if not signifying violence (by a person and against a person).

    So, you are saying that the staff can respond with force to anything that they judge to be violence. As this notion is highly subjective and encompasses a range of behaviors, I believe it is not necessarily rare. What if a person raises their voice? What if they verbally threaten someone? What if they take out their anger on an object such as a punching bag? Do you intervene? Would you go into a boxing gym and restrain everyone in sight for being violent? Or do you treat people in your facility with a different standard than the rest of the world enjoys?

    A justifiable standard for use of force is a physical _assault_ and the person with a right to defend themselves is the person who is being assaulted provided that they did not instigate the assault. Since there are cameras in your facilities, this standard can be enforced and justified in a court of law.

    Other standards would seem to provide a slippery slope of subjectivity. If you disagree, can you please explain how the standard of responding to ‘violence’ can be consistently enforced such that abuses like those described by “Someone Else” do not occur?

  • An underlying question, here, is: what is equality? It seems to me that people with power typically argue that maintaining their power constitutes equality, while the less powerful people argue for the deconstruction of power. This is a process that happens in a variety of spheres (politics, eduction, medicine, etc) and involves a variety of groups (men, women, queers, racial minorities, persons with disabilities, etc). And it seems to hold true, regardless of which groups hold the power, even if the power holders are a numeric minority.

    All of us occasionally hold power and occasionally do not. Even the most powerful male in politics in the US is subject to laws, to congress, and to public opinion. It is not a question of whether each of us, as individuals, have power. It is question of when we have power do we jealously maintain it, and when we do not have power do we compete for more. Or, do we reject the quest for power. Do we promote equality and do we deconstruct power?

    I will echo Chaya’s call to hear the voices of the less powerful. When each of us is in a position of power, we need to be a little less certain that our opinions are right and listen more to others. Let us build bridges and empathize with people who are different from us.

    I believe that Chaya modeled exactly this listening behavior as she deconstructed some of her power as an MIA author to say:
    “I hope I didn’t alienate too many people with this relatively un-diplomatic post… Perhaps this is an example of the oppressed treating others the way they have been treated.”

    There are some voices that seem absent on MIA. Others have mentioned the voices of racial minorities. I will note that I have heard the voices of queers, poor people, service providers, and service users.

    I have not heard the voices of non-citizens under psychiatric incarceration who fall under no national or international law. They are living in a black-hole. It is arguable that the situation for psychiatric users who are citizens has improved somewhat. The mental health law, while falling far short of what many of us want, does require legal representation for psychiatric users. Non-citizens have none of these protections and no rights under the constitution. Should we not hear their voices and fight for them as well?

  • The main point is that ‘equal’ treatment is always subjective. Most groups fighting for what they think is equal treatment have to defend against charges of ‘special’ treatment. Didn’t the white majority decry integration based on existing law and because they thought there was already ‘equal’ treatment? The Animal Farm rules always operate on the basis of power:

    All animals are equal but some animals are more equal than others.

    I agree with you that we should have equal treatment. I deliberately remove the phrase “under the law”, because the law is what we are wanting to change. Current law excludes large groups of minorities that deserve the same protection that I wish for myself. Current US law excludes people with diagnosed mental illness form equal treatment in hospitals and court rooms. Current US law excludes non-citizens from the meager protections provided by the mental health laws. I think these laws perpetuate unequal treatment.

  • “From January 1, 2016, all psychologists and psychotherapists in Belgium will need to register in an official list. This should slash the number of unqualified therapists and help more Belgians stay off antidepressants.”

    I can see how an official list would help patients find trained providers and probably keep them from going to untrained therapists.

    But how does this imply that more Belgians will stay off antidepressants? Presumably untrained therapists cannot prescribe antidepressants. So how does such a list limit access to antidepressants?

  • I can totally see the cameras being a problem for people. But I wonder: is the severity of the problem more reflective of the power dynamics involved in how the cameras are used? What if patients had control of the footage? Would that remove some of the threat? What if patients could use the footage to substantiate claims of mistreatment by the staff?

    When I get worried about data collection, I just remember that post entities doing the collecting are drowning in data that they cannot analyze. Take video footage for example, a human is required to review the footage, and if they are looking at multiple monitors, they miss a lot.

    The key for patients is to not attract extra scrutiny and let the massive amounts be a shield.

  • Sera,

    I will attempt to reply to your question from my perspective.

    You ask whether force should be on the menu of options. I hope that you do not mean “menu of ‘treatment’ options. The propaganda that sells the assault of forced-drugging as ‘treatment’ is sick.

    IMHO, there is a great deal of bigotry driving the discussion of this topic. In a legal sense, the use of force (by an individual), should be and always will be “on the menu of options” in extreme situations, even if we outlaw forced treatment. Why? Because self-defense can applicable, even if forced treatment is illegal.

    I am anti-forced-treatment, pro-choice on the issue of suicide, and in favor of self-defense (with the caveat that it is always better to involve the authorities). I am totally against the misuse of self-defense for discrimination, as we saw in Florida. But self-defense exists, precisely because humans instinctively protect themselves from assault.

    How do I see a hospital/retreat properly implementing self-defense? The notion of ‘danger’ must go. The ONLY appropriate use of force in a treatment setting is when someone is protecting themselves from a physical assault that was instigated by another person. This must apply equally to staff and patients, and this means that forced-drugging is viewed as instigating an assault. In this view, it is natural and legal for a patient to resist forced drugging.

    Again, I must emphasize the difference between ‘danger’ and ‘assault’. The former cannot be substantiated since it is hypothetical. The latter can be substantiated by record of physical action.

  • Nicely written post with interesting points.

    cindypetersondana, thanks for mentioning the “clinician’s illusion” in relation to this.

    I want to remark on the exercise issue. I too was an athlete prior to being on drugs. Since I was in a sport where people compete based on weight, my sport participation involved weight loss.

    However, after starting Zyprexa, I steadily gained weight no matter what I did even when I continued to compete. I couldn’t believe the number of doctors that refused to acknowledge the magnitude of my weight gain on Zyprexa (~60lbs total) and that continually told me to exercise and eat well to fix the problem. Doctors routinely compared my situation to overweight people not taking metabolically diabolic drugs. They refused to recognize that the same strategies that allowed me to loose weight before Zyprexa totally failed to work while on Zyprexa. My experience was that no amount of exercise or good eating was going to fix the metabolic problems that Zyprexa introduced.

    I wish Zyprex weight gain was the end of it. I took another antipsychotic that ended all exercising. The drug made me retch and puke whenever I was physically active. I told my doctor but was met with utter disbelief. The only solution was to remove the drug, because the problem did not seem to be dose dependent.

    With things like this going on, I find it absolutely mind boggling that people can be considered recovered while under the influence of drugs that prevent them from living a healthy life.

  • Francesca,

    “…to be as respectful as possible… If I need to do more, I will try harder.”

    Yep, I will try harder, too. So, on that note, if I say anything insensitive, please tell me.

    Please let me repeat what I understand you to be saying about your own experience and why you find it to be a counterexample for anti-forced treatment. You were in an emergency room, incoherent with phantom pain, unable to understand what was said to you, thought you were on fire, and were non-verbally rejecting treatment. Regardless of your rejection, treatment, in the form of an anti-psychotic, was administered and gave you (quick?) relief from both the pain and the phantom fire. As a result of the relief, you believe that the doctors did exactly the right thing in treating you despite your rejection. Many others here have suggested alternative treatments, and it seems that you believe that only the anti-psychotic would have been effective. I am given to understand that this last is inherently hypothetical, because the doctors did not, in fact, try anything except the anti-psychotic. Additionally, there was some discussion of the role of withdrawal, but you seem to think that this is a red-herring.

    Is it fair to say that in some sense your rejection of drugs might not have been informed? In that you might not have even known what they were offering you, if you did not understand what they said? Would it make a difference to you if the definition of rejection involved demonstrating some understanding of what was being rejected?

    Philosophically speaking, I think law is a human endevor and is not always fair. For example, perfectly innocent people wind up in jail. As another example, people get away with crimes when there is no victim. So, in a sense there is no such thing a pure implementation of the abolition of forced treatment. In some sense, if nobody prosecutes violations of abolition, then they are allowed to exist. Perhaps this would be the case for your example, particularly since you do not view yourself as a victim.

    This does not mean that the a law abolishing forced treatment has loop-holes or should have loop-holes. (By the way, implied consent is still an issue, here, and might be considered a loop-hole.) It merely means that the application of any law is imperfect.

    No law is totally fair. It will exclude some people and include others. This is part of why we are guided not only by law, but also by ethics. It seems to me that a law abolishing forced treatment should be written to protect the most flagrant violations of human rights. (A potentially offensive statement coming.) What I am suggesting is that there may be more cases of people rejecting forced treatment and viewing themselves as a victim than there are cases of people rejecting forced treatment and winding up grateful for it. In this case, the law should be written to protect the most people from the most egregious wrong.

    Would it be possible that even if the doctors had not forced treatment on you, that you might have eventually consented? I would like to think that there is a resolution to your situation that is not black-and-white. That is more about consent than about force. Perhaps I am wrong.

    (I have been in extreme pain in an emergency room trying to get help. I empathize with the situation you present, and I hope that my comments are respectful.)

  • At the risk of continuing what some might view as a hurtful conversation, I have a question which might be quite pertinent. I will get to the question by presenting a few scenarios.

    If person is unconscious this implies consent for trained medical professionals to treat the person. (There are all sorts of complicated laws for untrained good Samaritans, but my focus is on trained professionals.)

    If a person is incoherent with a fever, it is my impression that most medical professionals treat them.

    What is the line between implied consent and the ability to reject/accept treatment? (It seems to me, that one problem with current psychiatric practice is the asymmetry: psychiatrists will allow you to accept treatment in situations where they will not allow you to reject it.) If we assume that consent is symmetrically applied to both rejection and acceptance, let’s consider situations which count as rejection. What is the difference between being unable to communicate rejection and being able to communicate rejection? Does rejection need to be verbalized, written, signed using ASL? Can rejection be expressed physically by pushing the drugs away? Do all of these count?

    What I do not quite understand, Francesca, about your account is that you say both that you were rejecting treatment and that you were incoherent and could not communicate. Somehow, I cannot see these both being true at the same time. Is there a temporal relationship between these two? If so, when does implied consent kick in? When would it kick in for any other medical issue (besides psychiatry), such as a person falling into a fever?

    Despite the differences of opinion expressed here and the tendency that we all have to ignore people who disagree with us, I think there might be an underlying issue here that involves how we interpret consent/rejection.

    (Totally as an aside: I realize that people have already been hurt discussing this issue. Someone has previously been excluded from other forums. Someone, here, had to take a break from posting. I also realize from the careful wording of many posts that everyone is trying their best to not fan the flames. Unfortunately, this issue is inherently inflammatory due to the differing viewpoints that people have and the amount of pain that everyone has experienced around non/forced psychiatry.

    Let us all continue to respect each others positions with our posts. Let us not call each other names. Let us find the places where our viewpoints overlap. The viewpoints expressed here are similar to those that appear in society. If we cannot discuss these things civilly, here, with relatively like-minded people, we will not be able to address the concerns that the broader society raises.)

  • I hear all your voices and comments ranging from the impenetrability of academic language to the lack of voice that we have. All of these are important and perhaps this is exactly the kind of thing that the editors are looking for.

    What would happen if we flooded them with submissions? It would increase the chance that some of our submissions would get accepted and that we _would_ have a voice. There is nothing in the call that says the submissions have to be written in academic language, or that a submission could not discuss the barrier that academic language presents towards survivor participation.

    Anyway, I’m happy to participate in a joint submission. I do not want to write something by myself, but am happy to participate. My thoughts are on topics such as:
    1) Unburied fatalities: how surviving means not dieing
    2) Having a voice
    3) Having a community
    4) Having professional identities when people assume that we do not
    5) Efforts by mental health professionals to disrupt our communities and prevent us from connecting with each other
    I would also be open to any other survivor related topics.

    If anyone is interested in working with me on a submission, please email:
    [email protected]

    Let’s use our community here on MIA to get these journal editors to pay attention to us. Let’s give them the submissions that they say they want!

  • Francesca,

    For starters, I want to say that I really respect what you are doing in BC to create a survivor community. I used to live in Vancouver, felt horribly isolated, and wished that I could have connected with the community there. I also have great respect for your eloquent comments on MIA, including the one above.

    As for a reply, I am an unapologetic abolitionist who deeply feels the pain of individuals and families that see the good in forced treatment. Indeed, your critique is difficult to respond to. I have a very good friend whose sister went off the deep-end refusing help, and recognizing my friend’s pain and the disaster in her sister’s life causes me dissonance in my abolitionist stance. On the other hand, my own experience with treatment has revealed how ineffective much of it is even with consent and how forcing people to accept ineffective treatment may only serve to poison people against whatever utility such treatment may have to offer.

    For me, the underlying issue is actually freedom of choice. If someone wants to use drugs, by all means. But their decision should _never_ be questioned based on their ability to choose. By the same token, if someone chooses to use drugs very infrequently or perhaps not at all, their decision should not be questioned. In my opinion, this right of choice is denigrated by forced treatment. Even your right to make an advanced directive in favor of treatment is undermined by the current climate that distrusts the choices of anyone with a mental illness.

    I want a world where people do not reject treatment just because it might be forced on them. A world where treatments are evaluated objectively and not as instruments of power or conformity. Science would advance faster if we could only decouple our evaluation of the effects of treatments from the intent with which they were administered. Advocating for forced treatment is a bit like saying that slavery is good because it keeps slaves employed. Well, there are many other ways to keep people employed, just as there are many ways to administer effective treatments without forcing people.

    Getting back to your point, what to do with people who refuse treatment but might benefit from it. Suppose for the moment that the treatment is unquestionably beneficial for this person. Why do they refuse it? Is it perhaps the threat of forced drugging that lies behind their refusal? If they think drugs are the devil, perhaps they are just responding to current societal pressures (embodied by the existence of forced drugging) to view drugs in a black and white fashion. Perhaps they have a reason that other people do not understand for behaving the way that they do. In that case, perhaps it is more productive to try to understand them (a la Open Dialogue).

    I realize that my answer is unsatisfying. Particularly for people experiencing difficult, seemingly intractable situations. But forced drugging is not a panacea. It might even be part of the problem. Perhaps people would not resist drugs so much if they knew their choices were respected. Perhaps advanced directives would be respected if people were allowed an genuine choice.

    In any event, whether you disagree with my answer or not, it is imperative that we on MIA have a sense of community that is stronger than our disagreements. A successful movement for change requires that our community has room for dissent and discussion. Thanks for posting.

  • I whole-hardheartedly agree with this article. I made the decision in my own science career to forgo attempts at publishing in the journal Science. Why? I ask, does the journal make the paper? Or does the paper, many papers, make the journal? If a paper is very, very good, it will be well read despite being published in a ‘so-called’ mediocre journal. The industrious scientist can always name articles with similar success. However, a horrible article published in Science can get acclaim it does not deserve and can mislead other scientist for decades.

    I want to make an honest contribution to science. So, I choose to publish in the journals that (may or may not) practice more skepticism, but at least do not over venerate the ‘sexy’ science.

    (Disclaimer: I was trained in part by one of the scientist quoted in the article, Michael Eisen, UC Berkeley).

  • Apparently the current standard is all about what makes other people uncomfortable. In terms of ‘madness’ it appears to be defined by the people not experiencing it. Observers don’t label people mad when they risk their life in war or sport, but if they risk their life counting, observers are very uncomfortable (particularly if the observers don’t even know the reason).

    Since there are acts of free will that can seem irrational, the observer’s comfort level seems to be very questionable standard. This is why it’s critical to protect people’s freedoms when they are not committing a crime.

    I think the notion of sickness is not terribly useful. It seems better to deal with the context and the situation and to discover the meaning that exists. This is effectively what Open Dialogue does.

  • Wow. Nice writing.

    It sounds to me that he was never sick, and the whole thing was an exercise in free will. Is the desire to count considered psychosis? Or the desire to count to the exclusion of ‘health’ that makes the observer think this is psychosis? Indeed, if it was psychosis, how would he have been able to count without getting confused, not distracted, confused? I think Occam’s razor suggests that he was never sick, just committed to his task.

    How many times do we force people to effectively become sick just because we do not understand them? Our interference makes for sickness where it is not, just because we believe it is there.

  • Nice, well written response!

    Unfortunately the article did not clarify the definition of parity. I think the details, here, are quite important.

    Personally, I have some mixed feelings about this parity thing. For the most part, I see it reinforcing the existing maladaptive system. I dislike that it seems geared towards the typical drug treatment as the ‘standard of care’. On the other hand, maybe it is possible for some people to use parity arguments to gain access to non-coercive therapy and alternative help. Though, I suspect the harm of parity may outweigh the good.

  • It’s not clear to me that the main ideas driving the movement(s) have a common origin. Perhaps a lot of ideas are rediscovered by many people. In biology, we would call this parallel evolution, two independent branches of evolution may ‘rediscover’ the same helpful mutation or a similar morphological structure. It is certainly NOT the case that two ideas seemly similar ideas must have a common source.

    Perhaps there are enough ‘truths’ inherent in our experience of a maladjusted society that many survivors discover their own viewpoints which turn out to be similar to their neighbor’s viewpoint or to Szasz’s or Breggin’s or Laing’s viewpoints.

    I certainly haven’t read any of these scholars. But this doesn’t stop me from thinking that ‘schizophrenia’ doesn’t exist and that forced treatment is not ideal. While my ideas may be in line with some things written by some scholars, my own experiences are the primary source of my ideas. I think you might find that most survivors feel this way.

  • I tried to query the psychiatrist and was told something about people over-doing the exercise. Though why they thought that mentally ill people were more likely to exercise too hard than anyone else was beyond me. Especially in an age where most people, including him, exercise too little.

    Oddly enough, I had just told this psych that I had an old injury which he did not recognize as a sporting injury while every MD I have ever talked to has recognized it. Also, you would think that psychiatrists would have enough people skills to make sure that they are not offending an athlete before they sound off about not exercising.

    I just chalked all this up to him being a bad doctor and ran for the hills.

  • Thank you. I agree one hundred percent, and I stand in solidarity with you.

    I’ve been told that I self-injure in an absurd assessment that was ignorant of the context. Fortunately, the assessor also thought that people with mental illness should not exercise. Perhaps we should start calling the sedentary life-style self-harm. Or perhaps drunk driving, or even road rage should be labeled as self-harm. Maybe football players that play despite knowing the risk of concussion are self-harming. Or what about the tendency of some psychiatrists to share idiotic opinions with patients so that the patients decide to pay someone else?

  • Sandra,

    Thank you for your post. It is good to see people grappling with important questions.

    Can you elaborate your comment “I think many psychiatrists accept this with some sorts of problems but not always when it comes to psychosis.” Here, I believe that “this” refers to the idea that people can recover from psychosis even without there being a biological understanding of the problem. Please correct me if I am mistaken.

    To me, it seems that the key issues is respect. For a person experiencing psychosis, be it caused by abuse, sleep deprivation, drug withdrawal or some unknown biological or physical factor, their perspectives and beliefs are probably a result of trying to make sense of their own experience. What matters is that their experience is genuine, regardless of whether a bystander believes it or not.

    When a person’s experiences are respected by their support system, they are empowered to make changes in their life, make informed decisions about medication, and to influence the course of psychosis. However, if their experiences are denigrated and their judgment doubted, this invalidation can lock them into a disempowered state and make them helpless.

    Regardless of what we do not know about psychosis, we do know what stigma and discrimination can accomplish.

  • The name for manic depressive disorder was changed to bipolar. The name for split personality disorder was changed to dissociative identity disorder. Did any of these make a difference? No. The public still would rather scoff at people than try to under stand, and psychiatrists simply transferred there existing stigmas to the new label.

    As long as schizophrenia and PSS are equated, the stigma will not change. Why not try something truly radical like defining PSS to be something different than schizophrenia? Or perhaps by making PSS a label that is self-adopted, rather than assigned by psychiatry?

  • Such a card or bracelet is only a safety tool as long as there is respect (lack of discrimination) on the part of the police or medical professionals that see it. I have become increasingly cynical about the motivations and bigotries involved, and I do not believe that the wearer’s purpose would be respected.

    For example, people with drug allergies or serious medical conditions often wear bracelets. Similar medical concerns about unwanted drug interactions caused me to consider wearing just such a bracelet. The decision comes down to which is the greater risk? Is it that one might be forcibly detained and medicated? Or is it that in case of a physical medical emergency a doctor might unwittingly administer a contraindicated drug? Having become increasingly cynical, I believe that bigotry and forced medication are the greater risk.

    Understanding the concerns of our fellow consumers might be a window into finding alternatives and convincing them to stand with us against the introduction of such cards.

  • Nice post.

    For the time being, the white-card holders are going to experience the majority of the discrimination. For example, if they are in an accident, their medical care might be more poor than if they did not have a white-card. This is the same discrimination that people experience if it is known that they have a psychiatric diagnosis. This just makes it more likely that other people will know this.

    If or when there is a black-card database of people with diagnoses but not holding white-cards, then those people will experience most of the discrimination. I rue the day that this happens.

  • “There is no such thing as “psychogenic” pain. PERIOD!”

    Thanks for discussing these things. I absolutely agree. Our whole society needs to be more respectful of pain that we cannot see. Even if we do not have medical solutions, respect would go a long way towards not making things worse.

  • Ted,

    I’ve noticed in your comments a call to reach the public. I completely agree that we must do this if there is to be change. The biggest obstacle seems to be finding our public bus and our Rosa Parks or our public school to integrate and the few courageous students. There seem to be few public spaces where one or a few survivors can launch a visible protest about the civil rights of the mental health system. The public forums we already have are ignored, even some of the consumer groups that you disagree with do not seem able to reach the public.

    Suppose were were to focus on one mental hospital that forces treatment. If we tried to physically control access to the building by creating a human barrier, we might be able to accomplish two things: 1) draw media attention and 2) shut down the hospital for even a short time.

    It seems to me that one reason actions on the public buses and in schools were effective in the African-American civil rights movement is that they directly confronted the fears the public had about integration. By forcing a confrontation with that fear and essentially desensitizing the public, brought both media attention and progress.

    The fear of violence seems to be the greatest fear among the public regarding people diagnosed with mental illness. What if we could bring home the idea that the public is surrounded by non-violent people diagnosed with mental illness. Suppose a group of activists enter a busy setting (mall, movie theater, theme park, etc.) looking like everyone else. Then, they simultaneously put on a black t-shirt that says “(front) Being diagnosed MAD does not make me violent. (back) Forced drugging does not make you safe from terrorism.” Or some such.

    Perhaps other people also have ideas for slightly sensational non-violent demonstrations that might grab the public’s attention.

  • Dr. Ragins,

    The interventions that you mention are _social_ interventions, not _psychosocial_ interventions. Indeed, our society is not terribly kind to a lot of people. But that doesn’t mean that we should throw up our hands and reject well-thought-out psychosocial interventions.

    Indeed we do not live in Belgium. However, according to our American sense of competitiveness, we are quite capable of providing the best treatment in the world to our citizens. Why don’t we do exactly that? Why do other countries have lower rates of mental illness than us?

  • mjk, you are nobody’s fool. While it might be tempting to kick ourselves for what we did not know, I have no doubt that you did the best you could with what you knew, and that when you learned more, you did your best to get off of these drugs.

    I would like to see more discussion of the side-effects and withdrawal effects of ADHD medications. I have a dear friend who has been diagnosed with bipolar due to a tangle with Adderall. Given that she has had a long psychosis followed by deep depression, I wonder how much Adderall abuse and then withdrawal might explain this.

    Many of the ‘official’ sources are quite useless, as they claim that “Adderall withdrawal generally does not occur in people who take the drug as recommended for legitimate medical purposes.” So, if a doctor proscribes it, there aren’t any problems?!?!?!

  • You are doing such important work. I find it astonishing that so many teens have already had experience with psychotropic drugs, and I admire their bravery for deciding not to take them. Their ability to tackle tough issues like suicide is inspiring.

    Another analogy that might be interesting: a lot of queer youth have decided to be ‘label-free.’ This is because they find oppression in the very labels that their queer predecessors have used to win freedom (gay, lesbian, etc.). This observation is not meant to be an indictment of anyone’s self-identities, labeled or label-free. Rather, it is an observation that it takes courage to define one’s self-identity and to resist the social pressures that try to limit our options. It is similar when we survivors choose to reject the labels given to us, labels that restrict our options.

  • A million thanks to all the people braving the uncharted waters of psychiatric drug withdrawal and sharing their stories. It takes incredible courage to face the dragons in the deep.

    Your stories have been a warning and a guide to me. I may be one of the fortunate few who have learned from your stories just in time to avoid some of the worst withdrawal pain.

  • Touching and inspiring!

    No doubt Toran’s death was an act of great courage, a sane response to the pressures that he was under. It is beautiful to see that you love him and continue to parent him despite the pain of loosing him.

    Thank you for reaching out to change the world.

  • I too wish there was some kind of justice. Unfortunately, society seems unwilling to convict people that it thinks are respectable.

    I hang my hopes for justice on future generations. History will judge the people who commit egregious human rights violations, even if the judging doesn’t occur during the perpetrator’s lifetimes. This situation is has similarities to slavery in the US. Most of the slave-holders were never brought to justice. But, today, anyone who breaths a word of support for slavery or racism is hung in the court of public opinion.

  • Yes, actually it is reasonably common for there to be a wide range of responses to medication. There are the people who are allergic to certain drugs. There are people who metabolize certain drugs faster or slower than others (which is shown to be the case with some psychotropic drugs: Abilify). For example, there are cancer drugs that must be dosed according to a genetic test, because a dose that is therapeutic for one person would kill another.

    Unfortunately, we do not have much science for psychotropic drug response. The current best practice is to personalize the prescriptions. But this requires a practice that is truly respectful of the consumer.

  • Nice post! It has many interesting and valid points. I believe that the main weakness of all these studies is the diagnostics.

    I should begin by explaining who I am. I am a professor at a research university in North America. I study the statistical aspects of genetics, including inheritance, heritability, and disease.

    I am also a psychiatric survivor with a first-degree relative who is trying to survive. Given my training, you might understand that I was shocked when a psychiatrist conveyed his belief in psychiatric-genetics: since psychiatric diagnoses are genetic, he said, I must have exactly the same diagnosis as my first-degree relative. This statement flies in the face of know principles of genetic uncertainty. Even an animal breeder knows that it is possible to mate a black bull and a black cow to get a red offspring. This belief that psychiatrist have in the inheritance of psychiatric diagnoses borders on religion. It is not science.

    Even before I was diagnosed with a psychiatric disorder, I was involved in the analysis of a psychiatric-genetic study. I was appalled that my psychiatrist colleagues could not make up their minds about which diagnoses to use. Every week for a month, they sent me new diagnostic indicators. Of course I didn’t find anything in the data.

    When one looks at the diagnostics of these genetic studies, one typically finds about 2-5 sentences devoted to describing how the test subjects where diagnosed. The thorough studies will ‘re-diagnose’ the subjects by giving a new clinician access to the subject’s entire health records which undoubtedly include previous diagnoses and diagnoses of relatives. As a result these re-diagnoses largely reinforce the original diagnoses without really providing validation.

    So now, we have studies whose input data is based on the assumption that these diagnoses are inherited, and we try to test whether there is heritability. What do we find? The very heritability that we manufactured in the diagnostic process. This is a case of ‘invented heritability’ as opposed to the ‘missing heritability’ that we find for disease that are actually genetic.

    What do we do about this? Since science is a social process, I think that one good approach is from the inside. Scientists who recognize these flaws need to publish findings that explain the current lack of results. When enough support/disillusion is gathered, scientists sitting on funding panels will grant less funding to poorly designed studies. Perhaps even the funding agencies can be convinced to budget fewer funds for psychiatric-genetic studies.

    So, how do we convince scientists that these studies are flawed? One way would be to document the presence of diagnostic bias that assumes the existence of inheritance. Such a study might invent mental health records for a number of ‘subjects’. The control setting would be that none of these fictitious subjects are related to each other. The setting under investigation would be that there are first-degree relationships between many of these same fictitious subjects. The hypothesis would be that the distribution of diagnoses in the control setting would be much broader and that the diagnoses of related individuals would be unreasonably similar. Here unreasonable would be defined by there being no known genetic factor that could produce such strong similarity. This would be rather strong evidence of the non-genetic basis of these diagnoses.

    Another way to document the influence of such bias is to design a simulation where we have a parameter for the bias. We could then simulate the genomes and diagnoses of related individuals and find our how much of an influence this has on heritability estimates. (This can also be done with real genomes and simulated diagnoses.) Such a simulation would demonstrate that an assumption of inheritance in diagnosing can produce what appears to be evidence of heritability. This would also be a way of modelling how much bias is necessary to produce different degrees of invented heritability.

    I hope to work on some of these things when my other commitments allow it. If anyone has any ideas, feedback, or wants to contribute, please let me know.

  • Very nice review… now I want to go read the book!

    As a response to the following critique:
    “there is little in the way of practical guidance to psychiatrists about how these drugs might be used to help people in the short-term, whilst minimising their potential for harm. There is also little advice or guidance about reducing or coming off neuroleptics for those who are taking them.”

    I think that withdrawal discussions are a necessary part of guidance for using the drugs wisely in the short-term. Since this is such a huge topic, it seems ripe for another book!

  • Thanks everyone for sharing their experiences and the conflicts of working on the inside.

    “We need the support of other activists (in collectively organized groups) to be able to successfully negotiate these “uncharted waters.””

    What sorts of support would you want from activists on the outside? Can you give me a wish list?

    I am focusing my efforts to work on the outside. I have the sort of personality that cannot tolerate working from the inside, so I would rather build bridges from the outside. I am currently trying to figure this thing out: where to invest my resources, energy, time, and money, to make a difference. It seems that successful coordination of activists inside and outside to system could be a winner.

  • snarky
    adjective \ˈsnär-kē\
    Definition of SNARKY
    1 crotchety, snappish
    2 sarcastic, impertinent, or irreverent in tone or manner

    im·per·ti·nent
    adjective \(ˌ)im-ˈpər-tə-nənt, -ˈpərt-nənt\
    rude and showing a lack of respect

    I shall assume that you mean the second meaning of snarky. Actually, by my reading, none of the comments here are snarky. Although some are negative, or a mix of positive and negative, no comment seems sarcastic. As for whether some comments may be rude, it seems that none of them are personal attacks against Dr. Mark. All of the comments are speaking either of their own experiences or about research. Many comments have welcomed Dr. Mark or have expressed admiration for viewpoints of his that depart from the mainstream.

    It may well be true that some comments can be viewed as negative, depending on ones perspective. For example, my call for trust on the side of prescribing psychiatrists could be taken as critical. On the other hand, it could be taken an honest eye-level expression of how stigma effects the consumer-psychiatrist relationship. Do I expect my comment to be given equal weight to any comment made by a psychiatrist? Absolutely. Mad In America is about hearing all the voices.

  • Dr. Mark,

    I respect and admire you for taking a stance on medication that is outside the norm in your field. The effort to encourage people to take responsibility for their health and to participate in their recovery is laudable.

    As long as doctors hold the power to take away people’s civil liberties with out trial, the trust required for full participation in recovery will never be present. As long as doctors do not trust their patients, collaboration is a sham. When the patient says a drug isn’t working, will the doctor trust the patient? When the patient brings up a potential drug side-effect that isn’t in the FDA database, will the doctor trust the patient? When the patient experiences paranoia as a side-effect of an anti-psychotic, will the doctor trust the patient? When the patient experiences anxiety, paranoia, mania, or even psychosis on withdrawal from medication, will the doctor trust the patient? When the patient experiences trauma or even assault at the hands of medical professionals, will the doctor trust the patient? When the patient encounters stigma that makes relationships fail, even relationships with medical professionals, will the doctor trust the patient?

    Or is it easier to believe that drugs are a panacea for all things, and for the doctor to use their authority to persuade or force the patient to take drugs? Sometimes I think our whole society needs a placebo for mental health. Perhaps we should come up with a harmless little pill to help all of us, patients, families, and communities, with our feelings of impotence surrounding mental illness.

  • I agree with Stephen. Part of the reason that we still have pharma-centric approaches is because of the stigma. People are not actually allowed freedom of choice in terms of medication, because the pernicious stigma questions their judgement.

  • The psychotropic drugs certainly have long-term consequences: memory loss, cognitive dysfunction, etc. I fully support delayed administration of psychotropics and the restriction of settings in which they are employed. Simple sleep aids such as Benadryl should be the front-line defense against sleep deprivation in mania and psychosis.

    That being said, we absolutely cannot discount the crushing stigma. The judgment, abilities, and the contributions of people diagnosed with mental illness are discounted by our society. This is pernicious. It means that people diagnosed with mental illness will almost always be passed over for employment when the employer has an alternative. Try concealing the health history of the people you are trying to help. I guarantee it will improve their chances of getting a job.

    Just to explain how pernicious this is, I will illustrate with my own experience. I have a Ph.D. from one of the best universities in the world. I can trounce most mental health professionals on test of cognitive ability. And despite this, or perhaps because of this, I have had a mental health professional question to my face that I have a Ph.D. Their excuse was simply that they did not have anyone with which to verify my story of having a Ph.D. This was stated despite the fact that a simple web search will find my dissertation which was published by my university in a publicly available database of dissertations. It is clear to me that some members of society are only interested in doubting, in stripping people of their achievements, in perpetuating stigma, and not in fact or even in recovery.

    This kind of stigma makes its own truth: it makes people worthless by denying their abilities, robs the value from people’s professional achievements, takes away jobs, and denies employment.

  • I think it all depends on how things are presented. These truly are bipartisan issues, and, as most civil rights issues, have been supported or not supported by one or the other party at various times. The trick is to convince both parties to side with us for their own reasons. Individual freedoms and small government are the way to convince the right to be on our side. As for the left, we need to convince them that this is a civil rights issue rather than an access to treatment issue.

    In order to make progress on the legal front, we need the right case, the right lawyers, and money to pay for it. While we seem to have plenty of cases that are almost right, there is a dearth of lawyers and money. To change this, we need community, visibility, and allies.

  • Communities and identities go hand-in-hand. Strong communities, such as families, are organized around a common identity that separates members from the rest of humanity and around the members responsibilities to the group. We have plenty of communities in the US, ranging from families and religious organizations, to sports teams and universities.

    For our movement, the challenge is to create a self-sustaining community. This is advantage for all of us, because the community can support each of us through rough patches, can provide an alternative mental health model, and can be provide the funding and foot-soldiers for grass-roots for activism.

    What do you think has driven the success of the gay movement? Community. A community that has always welcomed young gay people that are rejected by their parents. A community that funds the amazing social and legal revolution that we see today.

  • @JeffreyC

    I hear you brother. The world is a wacky place where abuse is considered treatment and refusal of treatment is considered abuse. The professionals ‘treat’ problems they have created, and they deny the experiences of survivors who say the ‘treatment’ is harmful.

    The madness in the system can leave the sanest of us feeling and seeming dysfunctional.

    “Although I’m so close to just leaving this Earth anyway, I don’t give that much of a shit anymore.”

    If you want to leave, it is your choice, your right. You have certainly endured more than most people can bear. No matter where you go from here, please know that you are valued on MIA. You words have inspired me. Your comments to me have been thought provoking. Take care.

  • I agree that the potential here is disturbing. However, I cannot call this Nazi eugenics which was essentially a selective breading program applied to humans where observed traits drove decision making by the state. What we have now is some type of modern eugenics driven by a desire to eradicate disease and by our meager understanding of how multiple regions of the genome can interact to produce risk of disease. These discussions are necessarily probabilistic, since having some risk of a disease does not guarantee getting it.

    Unfortunately, these nuances are probably lost on psychiatry. I fear that Francesca is right. Psychiatry will probably peddle their 22 schizophrenia-implicated genomic regions as well predictive of disease risk, even though the recent study (http://www.nature.com/ng/journal/v45/n10/full/ng.2742.html) says that 8300 regions together account for only 32% of the risk. This means that the mere 22 discovered regions probably account for some very small percentage of the risk… probably this number didn’t make it into the paper, because it was so unimpressive.

    While most geneticists look on this as a marginal result, I fear that psychiatrists will use it to motivate ‘preventative treatment’ and to sell new drugs that are coincidentally related to these genetic regions, while failing to refine their etiological understanding of this so-called disease.

  • mjk,

    You might consider finding an MD that is willing to diagnose cystic fibrosis without confirming genetic evidence. Even though it is not widely known, it is entirely possible to have cystic fibrosis and not have two recessive copies of the gene thought to cause it. This is one of those genetic mysteries that we do not quite understand, but it is certainly possible; rare, but possible. Good research doctors should know this.

  • Very good point. When we discovered simple genetic diseases the applications were astounding: think cystic fibrosis, Tay-Sachs, sickle cell anemia, etc. So, naturally, we thought that discovering the genetics of complex diseases would be equally as impactful. But, even if we consider the poster-child of discovery for complex diseases, age-related macular degeneration, where we know ~80% of the involved genes, we still haven’t figured out how to apply this knowledge to diagnostics, prevention, and treatment.

    I like Jay Joseph’s thesis. It would be equivalent to say that mental disorders are not genetic. I actually disagree. I think mental disorders are not even diseases. While it isn’t necessary to have an objective biological test for every disease (some are defined by exclusion), it is necessary to have a reliable algorithm. While the DSM has fake algorithms, they are by no means reliable, and psychiatrists don’t use the DSM anyway. So, the whole diagnostic processes is a sham.

    I’m not saying that emotional distress is not real. It most certainly is. But, distress should be honored not pathologized.

    IMHO, studying the genetics of diseases that are subjectively defined is absurd. And, if I ever sit on a panel that reviews applications for these studies, I will do my best to get them rejected. However, these proposals simply have to cite the number of people ‘afflicted’ with various mental disorders and the amount of money our society spends on ‘treating’ the afflicted, and the motivation for the study is plain. Everyone wants to improve the situation. Unfortunately, it seems that most researchers skip over the obvious answers, forget about Occam’s razor, and keep looking in unproductive directions.

    If only the powers that be would realize that the best way to save money on mental health is to stop spending money on harmful treatments.

  • This description is a total misrepresentation of the content of the journal article. While I agree with the motivation to disprove genetic claims about behavior problems (a sub-set of mental illnesses), we cannot achieve that by misrepresenting work.

    The paper cited here concludes that a DNA analysis of _unrelated_ individuals does not find any sites in the genome that significantly influence the trait. The authors then do a standard twin study which shows a fairly standard heritability result. Then they hypothesize that the difference between there results (heritability for the twins and no heritability for unrelated individuals) might be explained by the mechanism of how behavioral traits are produced from the information in the genome.

    These authors do not question the assumption that behavioral problems are heritable. They do not interpret their result to mean that behavior problems are not heritable, because the twins studies _appear_ to show incontrovertibly that behavior problems are heritable.

    Indeed, if the twin study is done carefully, their interpretation may well be useful. HOWEVER, I believe that the twin study was not done properly. I believe the elephant in the room is that the diagnostics is subjective and that the diagnosing clinician typically assumes these issues are genetic when making the diagnosis. There twins result may well be a case of garbage in, garbage out. If you assume something when designing your experiment, your results will necessarily recapitulate your assumption.

  • As for a white-coat demonstration outside a pharmacy, we need to make sure we know the laws about who owns the land and who can ask us to leave. For example, I think a privately-owed pharmacy can legally have the demonstration removed, whereas a state institution might not be able to do anything (legal) about it.

    I wonder if we can approach this from multiple directions. Yes, there are the publicly visible actions in front of a pharmacy. But, there are also subversive social actions we might be able to take. For example, I just socially met the head pharmacist at the local state mental hospital. If I showed up on her doorstep in a white coat it would certainly shock her, but perhaps there are ways to leverage more gradual social subversion.

    Any thoughts?

  • I chose my words carefully. How many people taking psych drugs are really informed about all their actual efficacy, their side-effects, and their withdrawal effects? I would guess only about 1-5% are informed, maybe less. I believe there are ways to inform people without alienating them from our cause.

    I’m not sure what the reality is in terms of whether people who are O.K. with taking psych drugs are also O.K. with forcing other people to take them. Have you taken a poll? Do you want to create divisions among us that may not actually exist?

    All that I know is my own story. I am a part of this movement (whether you want me or not). Although I have not yet been forced to take drugs, I was coerced into taking drugs even while I thought my consent was informed. I have always been against coerced or forced treatment of any kind, as one of my relatives was destroyed by a lobotomy.

    The coercion I have experience differs from forced treatment only in degree not in kind. Information was systematically withheld from me and bald-face lies were told to me about drug withdrawal. So much information was withheld or distorted, that I was even deluded into thinking that I was consenting. For all that I have been diagnosed with a serious mental illness, the only delusion that I have ever had is to believe that I was consenting to take drugs.

    We should fight coercion in all its forms, rather be fooled by our opponents into fighting people like us–fighting just because some have been deluded by the coercion. Our movement needs to be open to people taking psych drugs. How else will we teach people about issues of consent and coercion? How else will we include the people who cannot withdraw safely from certain drugs? How else will we create a society that we want to recover in?

  • Our efforts must be bipartisan, race blind, gender blind, diagnosis blind, medication blind, etc. We cannot even leave out the ‘Leaders’ who run ‘Alternatives’, even if we don’t want them to be out leaders. We must not denigrate those that prefer to take medication, as long as it is their informed choice. Our challenge will be to ignore our differences and to unite over our common mistreatment by the mental health system. No doubt, our opponents are quite pleased when we become divided, and they can dismiss our civil rights complaints as extreme.

    We need ways for everyone sympathetic with us to contribute. For those with high-profile jobs that could be lost, perhaps they can contribute anonymous donations. For those who have time but no money, we need local actions that they can participate in: peer communities, protests, etc.

    Actually, this ridiculous database of people with mental illness might very well push some of our peers towards our movement. Have you seen what bloggers are saying about it on PsychCentral? Some of them are rabidly against any such database. Also, we can view this database as an opportunity for privacy litigation, if we could find enough support to fund lawsuit(s).

    We also need to be very clear with the public that these are issues of civil rights and that anyone can wind up committed to an institution. We should loudly advertize instances where mental illness was clearly manufactured to control the behavior of someone:
    https://en.wikipedia.org/wiki/Adrian_Schoolcraft

    We could take advantage of the recent cuts in mental health spending for (state sanctioned) peer groups. We could be very noisy about our views, in the hope that SAMHSA and NCMHR groups do not have the cash or will to compete with us. For instance we could launch a campaign to advertize to the public that many people recover completely after being diagnosed with a mental illness. Imagine if we survivors ‘raided’ the local peer groups and spread the word about our own personal recoveries. Perhaps we should explain how expensive involuntary commitment is for our society. We could picket institutions with signs reminding new arrivals of how much their ‘care’ costs. Perhaps we should launch a campaign about the existence of psych drug withdrawal. We could put up leaflets at local hospitals and community centers, and we could start psychotropahollic anonymous (PA) withdrawal groups.

    I think the most important thing for our movement is to have a grass-roots community. This is what made the gay movement so powerful; there are coming out support groups in churches, schools, colleges, and many allies. This distributed structure provides support at the local level for new members, provides a strong identity, and a revenue stream for the state-level and national organizations. A similar statement can be made about the racial civil rights movement, however, they were fortunate to have their community already built in. We will have to organize our own communities, because they do not exist in too many places, yet.

  • I think I misrepresented that previous quote… I think Dr. Mark was speaking of the ‘we’ being the general approach in the US. Later on he says this:

    “What we’ve found when we offer sanctuary and hope and belonging and empowerment and self responsibility and meaningful roles is that some people do recover. Some never take meds, some start only after years of refusing or stopping and starting, some stop meds after years of taking them. Frankly, whether they take medications or not, isn’t our main concern if they’re achieving their goals and building a life. I don’t know what the percentages are because I do clinical work, not research, and besides I never know who the people being researched really are or what they’re getting. But I do know that the National Empowerment Center’s interviews are real and that Courtney Harding’s studies are real and that some people with schizophrenia can recover with or without medication.”

  • Dr. Mark, welcome. It’s a treasured and rare experience for me as a survivor to have open discussion with a psychiatrist about things that are important for recovery. Your writing here and on the Village site leads me to view you as a thoughtful and caring person.

    As to issues of drugs and their prescriptions, Dr. Mark has written several documents:
    http://mhavillage.squarespace.com/storage/46CanIRecoverandGetOffMyMedications.pdf
    http://mhavillage.squarespace.com/storage/44ThoughtfulPsychopharmacology.pdf

    If I may be so bold to place Dr. Mark on a continuum from only drugs as treatment to conservative/no drug and social support, then Dr. Mark’s approach is more like Open Dialogue than most other approaches in the US. But, perhaps, he depends a bit more on continuing existing drug regimes for his patients than on reducing the drugs. Here’s a quote:

    “If we offered services besides medications, if we didn’t require people to be on medications before we helped them with housing or employment or benefits, if we supported people while they were trying to get off medications and learned to rely on emotional and interpersonal help, maybe we’d have more people in our clinics who could get off medications. But, we’re not doing any of those things”

    Dr. Mark, it is wonderful to see psychiatrists who question the mainstream medication management approach. You clearly value psychosocial supports for patient recovery. But, don’t be surprised if people here, myself included, wish to persuade you that the drugs are more detrimental, have worse withdrawal, and have more side-effects than you think.

  • Leah, thanks for sharing. While I have felt suicidal on occasion, I have always kept it to myself until long after the feelings pass. It has always been the case, that finding a community that values me helped alleviate the feelings.

    What I find most interesting is the following. Take the people who experience extreme fear to the point that it makes them incredibly pessimistic about their situation (some unlearned people like to pejoratively call this paranoia, and of course they also think that psychosis must also go with it). Anyway, being one of these people, I find that properly dealing with extreme fear require addressing the cause of the fear (coercion, abuse, isolation, etc). The Hearing Voices movement effectively encourages this when people start to listen to themselves. This sort of thing is best accomplished in a supportive setting similar to the one that Leah describes as being useful for people with suicidal feelings.

    Could it be that the most useful thing for many of us so-called mentally ill is non-judgmental community? Perhaps a local community, or perhaps a retreat. If so, this is a good thing, because we don’t need separate retreat facilities for people with different ‘diseases’. We can also share local communities.

  • What would I like to see in a world without forced psychiatry?

    I’ll take a page from the gay-rights movement and describe a world that treats people with emotional distress (from now on referred to as alternative thinkers) as valuable members of society. I would like to see alternative thinkers having the right to ‘come out’ about it in a way that is safe and at a time that is right for them. I would like to for it to be uncouth to judge someone else’s situation or to force them out of the closet before they are ready. If someone says that their relative is acting strangely and must be an alternative thinker, then everyone else will frown saying that nobody should be forced out of the closet. And when we do come out, I want for our community to value each member, even when the dominate society may not. I would like to see peer groups of alternative thinkers and family of alternative thinkers support each other. We need to help each other brainstorm ways to decrease trauma and to heal from it. The greatest healing is in a community where we are valued, and if nobody else will create that community for us, we must do it ourselves.

    This is similar to the gay movement where PFLAG helps organize groups for gay people and their families, many churches have a gay community (official or unofficial), high schools have gay-straight alliances, political parties have gay groups, and allies are always encouraged to participate. In the community _strong_ support for the newly coming has saved many lives from suicide and violence (directed at gay people). This community formed the grass-roots of the gay movement, and it is at the heart of political success.

    Why cannot we replicate this for ourselves? There are barriers that make this difficult (for example coming out as an alternative thinker will currently result in lost jobs). But we can form a community. We can be honest with each other and (perhaps) with our families. We can support each other, love each other, and decrease the chances that one of our own will attract the attention of psychiatry by suicide attempts or violence. We can form strong identities around our alternative thinking that will help us stand upright in the face of stigma. Maybe we can get a law passed that protects our jobs. Then we can be even more visible reducing stigma still further.

    We can change the world.

  • It is indefensible to diagnose side-effects of drugs as mental illness. One of the drugs I took made me puke. The doc I was seeing, who is probably the best, kindest doc I have seen, couldn’t grasp the idea that the puking was due to the drug. Fortunately he believed that I actually was puking (unlike some doctors who call everything they don’t like a delusion), but he kept trying to ascribe the puking to me or anything besides the drug. But I know it was the drug; the puking started soon after starting the drug and vanished (reliably) when I quit the drug.

    It is pernicious that the judgement of people diagnosed with mental illness is questioned. It’s not just the doctors doing this; it is everyone in our society. If people know that you have been diagnosed with a mental illness, few people will trust what you say, even if you are an expert or are speaking about your own experience.

  • I agree that the APA appears to have all the power. This would seem to be why they think it is a good strategy to ignore us

    The APA may think their position is so strong that they don’t even have to pretend to listen by bending a deaf ear. Actually, although it is inconvenient in the short term, I think in the long term this will be better for us. Their unwillingness to participate in a reasoned discussion will backfire on them. They will eventually be judged in the court of public opinion, and their antics will be seen for what they are: duplicitous arrogance

  • I wanted to respond to your comment about how the profiling is particularly harsh on women (and I would add: minorities). There is a great deal of bias both in terms of who is encouraged to ask for help from clinicians and in terms of how certain behaviors are viewed. For example, I have very little doubt that, no matter how they actually behave, black men are viewed as more threatening by the clinician and are more likely to get drugged/restrained/confined. On the flip side, men are not so frequently diagnosed as depressed. Whether this is because they do not seek help or whether their experiences are just not seen to be as problematic as experiences of depression by women.

    The category of so-called problems that I find to be the most biased are discussions of self-harm. For example, I have been known to hit punching bags and even walls when expressing anger. I argue that this is constrained and self-regulated expression of strong emotion. Apparently society agrees with me. However, I have a female friend who also has been known to hit things on occasion, and somehow her coping mechanism is classified as ‘self-harm’.

    The list goes on an on. Women are more likely to be considered manipulative and get a diagnosis of borderline PD. Women are more likely to get a diagnosis of bipolar II. Perhaps this is because our society still has a paternalistic view of risky behaviors for women or because women are given antidepressants at a higher rate. Whenever women have a chronic medical condition, chronic pain, CFS, etc, they are often referred to psychiatry rather having their main condition addressed.

    Unfortunately, it seems that socioeconomic status is a strong correlate to diagnoses of schizophrenia versus bipolar. In short, our society more often gives the label of schizophrenia to people who are poor and/or minorities.

    The diagnoses of psychiatry recapitulate our society’s biases. This means that profiling efforts are tools of social control. As you say, profiling is also a blood libel, since it is both deeply offensive and based on false scientific claims.

  • We should most certainly not conform to their language. Either their language should be redefined to match our meanings not theirs, or we should not use their language.

    When I first got diagnosed, I asked a lot of people what they meant when the used the words paranoia, psychosis, mania, etc. I never got satisfying answers. Unfortunately, I did use their words for a while, only to discover that they meant something totally different than I did. I have since stopped using their words, because nobody knows what they mean anyway.

    The crazy docs don’t even use the DSM definitions for things. No, they redefine the language on an ad hoc basis using the current patient as the new definition. If they say you have paranoia, mania, depression, etc, then you do by (re)definition, and if you argue they just pile on more terms like “lack of insight”.

  • Routine psych screenings is how to teach our kids to lie:

    Psychiatrist: Do you ever have thoughts of ending your life?
    Smart Kid: No, sir, never. I don’t ever think about death, not even the afterlife.
    Psychiatrist: Do you ever want to hurt anyone?
    Smart Kid: No, sir, never. Since nobody is ever mean to me, I never think of hurting anyone.
    Psychiatrist: Do you ever get sad for days on end?
    Smart Kid: Sad? I cried when I broke my arm, but only for as long as it hurt. I don’t get sad for extended periods.
    Psychiatrist: Do you ever get really, really happy?
    Smart Kid: No never. I do cheer when my favorite football team wins, but I don’t get any happier than any other fan.

    Next thing we know, the conformity won’t even work, because we will all be diagnosed with flat affect.

  • If we want to keep guns out of the hands of hands of violent people, it would be far less expensive and provide better prevention to ban automatic weapons entirely. (I’m not necessarily anti-gun, but I’m certainly anti-idiocy, anti-expense, and anti-discrimination.) If the public wants to keep mentally ill people from getting guns, why don’t they prevent themselves from getting guns? That way they could be sure not to miss any of the diagnosed mentally ill that might be hiding in society, and they wouldn’t miss anyone that would be diagnosed in the future. If they ban guns for everyone, they don’t have to set up an expensive profiling system that will inevitably have loopholes.

    The real problem, here, is that the only thing the political parties can agree on is their fear of the mentally ill and the ease with which we can be scapegoated. Never mind that it will cost billions of dollars to set up a profiling system, to provide ‘mental health care’ for the people who are positively profiled, to pay for the medical care to treat the effects of the ‘mental health care’. When it comes right down to it, I believe they hate us too much to spend enough money to properly do the profiling and ‘care’ for us. Look at mental hospitals today; they are so despised that they ‘don’t have enough beds’ (thank god). The politicians just want to pretend they are addressing the gun violence problem.

    Maybe I’m like those Jews who stayed in Germany out of denial. Perhaps the profiling will be quite effective, will dig through people’s medical records, and will identify everyone who has ever taken a psychiatric drug. Maybe the profiling will be made public, used to deny people jobs, and justify further restrictions on our liberties and civil rights. Maybe all of us will be rounded up and forcibly segregated from the rest of society. Maybe our resistance efforts will be destroyed by the incarceration of our leaders.

    On the other hand, the profiling efforts seem to be sufficiently broad that nearly everyone will end up being labeled mentally ill at some point during their lifetime. Maybe the effort of the mental health community to expand their patient base will end up looking utterly ridiculous when nobody escapes their labels.

  • This whole discussion is about language and reclaiming it. I am strongly reminded of the lengths that other disenfranchised groups have gone to in reclaiming the language that is used to describe them. Classic examples are: gay, queer, disability, n-word, etc. See Wikipedia for more examples:
    http://en.wikipedia.org/wiki/Reappropriation
    We should follow this venerable tradition and reclaim some of the language used to describe us.

    So the question might be: strategically speaking which words are the best/easiest/most impactful to reclaim? Ted suggests that we reclaim ‘anti-psychiatry’ while others here suggest other words/phrases. I’ll make my own list of my favorite words to subvert:

    mad — see MindFreedom’s MadPride effort
    crazy
    depression

    It seems difficult, but perhaps necessary, to subvert words that are used as slurs against us, even the words that are ‘medicalized’

    bipolar
    schizophrenic
    psychotic
    paranoid

    Fortunately, these words are widely over-used and their over-use could facilitate their subversion. For example, nobody seems to know what psychosis actually is, rather it is just used by psychiatrists to label any behavior they do not understand or agree with.

    ‘Anti-psychiatry’ is also used as a slur, and is a prime target for reclamation, just as Ted suggests. Strategically speaking, which words do we think are worth the effort to reclaim? Which ones best describe us? Which ones are so powerful as slurs that they must be reclaimed to prevent harm?