Wednesday, August 21, 2019

Comments by HH

Showing 35 of 35 comments.

  • My primary care doctor started giving every patient a written questionnaire at the beginning of each visit, to screen for suicidality. It was the same basic questions you mention in your article. When their office sent me a feedback survey in the mail, I explained that these questionnaires don’t help prevent suicide. If you want your patients to tell you what’s going on in their emotional lives, you have to make a habit of listening to the patient every time they come in your office, I said. They stopped using the questionnaires and started making a point to connect personally with the patient at each visit. Yes! Progress!

    Your experience with the system sounds horrible- and typical. For your information, SSRIs can cause mania in anyone- not just someone who has bipolar depression. They can CAUSE the tendency to mania. Who knows if you had any tendency toward mania before you took an SSRI. It’s not just that SSRIs are bad for people who have bipolar. They can CAUSE it.

    I guess you learned the hard way, not to go off of psychiatric drugs quickly, or cold turkey. The safest way to go off of them is VERY slowly. A friend of mine went off of them safely and successfully, by taking about 2 years per drug, to gradually reduce the dosage. She gradually reduced the dosage of drug number 1, and over two years, reduced it to zero. Then she did the same with drug number 2. So it took 4 years to go off of two drugs. But it worked. No relapes, no withdrawal symptoms.

    It’s understandable after your experience, that you don’t trust the system that’s purported to be there to help you. I don’t trust them either. For good reasons. WTF. I have found that it’s more successful not to expect them to be any good, and not to expect them to be helpful.

    I seek out individual people who I can trust. I don’t trust the system in general. I rely mostly on self care and on good friends. Basic physical self care goes really far, especially for the problems that get classified as “bipolar.” I mean things like good nutrition (especially green vegetables for folate, magnesium, and B vitamins; omega 3 fatty acids, enough protein, and avoiding chemicals and simple sugars as much as possible), regular exercise (it doesn’t have to be high intensity or long, though it can be- mostly the consistency of doing something every day is what makes the most difference), a regular sleep cycle of sleeping enough and at the same times each night, and getting outdoors during daylight hours, go really far toward taking care of the brain biologically. Then there are your emotional needs, which are also very important. I took psychiatric drugs in the early 1990s. I found that consistency with these things made the drugs less and less needed, until eventually I didn’t need them. That doesn’t mean that will be true for everyone. Different things work for different people, and it’s fine to do what’s right for you. You have options of who you choose to work with and of what things you do or don’t do, to take care of yourself. Long term, you can do what you want; you don’t have to accept a choice someone else has made for you. Short term, it’s safest to make small changes, very slowly, starting with adding positive lifestyle changes. Whether you continue to take the psych drugs long term, is your choice, and it’s no one else’s business. If you do ever choose to go off of them, just do it very very gradually.

    One of the tricky things about psych drugs is that their effects change over time. They can appear to work, and then years later, it becomes apparent that they’re causing problems. Mental health professionals have varying amounts of competence in helping with this.

    I think Robert Whitaker’s “Anatomy of an Epidemic” is an excellent read, and so are Grace Jackson MD’s “Rethinking Psychiatric Drugs: A Guide for Informed Consent” and just about everything by Johanna Moncrieff, MD. The point is to fully inform yourself so that you can make the best possible choices for yourself in the future.

    As for emotional needs, I might be unusual in this, but I don’t look for my emotional needs to be met by “peers.” I just find that there’s too much dysfunction and abuse in those settings. Nor do I rely on any organizations of any kind. I rely on friends who are actually my friends, where the friendship stands on its own and the person and I truly care about each other and there is no possible intermediary who could mess with it (such as a leader of an organization).

    There’s a relationship between self care and friendship. If both people are taking good care of themselves, the friendship goes better, because neither person is asking the other to fill a hole that is caused by lack of basic care of oneself. It’s a balance. When people do “self care” in the form of “I don’t have time to spend on the friendship because I am too busy with self care,” that makes it pretty hard to be friends. Theres a middle ground where both people take good care of themselves and make time for each other.

    In the early days when I was taking psychiatric drugs and then shortly after I went off of them, I relied a lot on the arts for my emotional life- especially music, and also dance. I sang, I played instruments, I danced- a lot. Arts were the main emotional outlet in my life. I got away from that later, and now I’m going back to it. It was very helpful to have an emotional outlet that wasn’t dependent on other people- that I could do by myself, sometimes, and share with others when they were available. Music is that.

    A more recent development is that I found out I have celiac. Knowing that and taking care of it, has helped me a lot. There are many medical conditions that have mental-health effects.

  • You are ignoring the content of what I said. I don’t think it should be called “assisted,” either. Sigh. Maybe you could stop and just actually think about the content of what I said. I am not going to keep fielding your comments which are just saying to me, “I am trying to use up your energy while ignoring what you already said.” What I said, is good enough and doesn’t diverge in values, from your opinion.

  • It’s not about refraining from mentioning, it’s about giving people a heads-up so they can make consensual choices about their energy expenditure.

    I suppose one could say that speaking loudly and clearly is also a form of catering, and so is having elevators in public buildings, and so is having restrooms with bars and with wide enough entrances for wheelchairs, and so is having electric doors. Life isn’t convenient, one could say, about all accommodations. It’s especially tricky for people who have disabilities that aren’t all that visible, such as brain injuries, or cancer, or other things that substantially change the amount of energy a person has, but don’t provide any obvious instantaneous difficulty observable to others. It’s easy to be inconsiderate and to view their needs as wanting people to cater.

  • I mean things filled with hateful personal attacks. When we respond to others’ well meaning but less than perfect language, with intentionally abusive hateful personal attacks, is what I’m talking about. I don’t mind people making respectful comments disagreeing with the content of what I am saying or commenting on my use of language. That’s not what people tend to do. They tend to get quite vicious with personal attacks, and they think imperfect language justifies it. If it was all respectful, I wouldn’t have a problem with it. Perhaps what I should say is, if you’re being deliberately hurtful in response to someone’s imperfectly worded well-intentioned communication, you’re the one who is wrong.

    I might have been correct in using the term “forced drugging,” except that some of them later said I was taken less seriously because of that. They voted for forced drugging. Sigh.

  • I agree. I am saying, make sure you’re succeeding in communicating your most important content to the audience you’re trying to communicate it too. If you fail to do that while pleasing yourself, what are you really accomplishing? If you think your presentation about AOT to the legislature was awesome, but they stopped listening because of terminology that they felt alienated by or didn’t understand to mean the same thing they were voting about (AOT) and then they voted for AOT, what did you accomplish?

  • I have heard “trigger warnings” called “content warnings.” I like that better. I think they are an important accommodation for the inclusion of people with brain injuries, in education and in other public conversations. Some people with brain injuries, including myself, need to budget our mental energy in order to be able to be organized to accomplish our other life activities, in order to navigate important social interactions (employment, parents, kids), in order to sleep (that actually takes mental energy, and doesn’t go well if one’s mental energy is too used up). People need to be able to make decisions about how and when to handle heavy topics, in the context of the other things they need their mental energy for. The “spoon theory” in Wikipedia explains this pretty well.

    When we speak loudly and slowly in group situations, so that those who are hard of hearing or use hearing aids (which take time to process) can hear what we’re saying, not everyone needs us to do that, and perhaps a few who don’t understand what the accommodation is and for whom it is, feel condescended to. But it’s an important accommodation for inclusion; otherwise, certain types of people are left out of the conversation. I think the same is true of content warnings. If you don’t find it useful for yourself, that’s OK.

    I think one thing that has muddied it is, people publishing articles putting down “trigger warnings” as something that weak “snowflake” modern college students are doing due to emotional fragility, that perpetuates emotional fragility. I’ve seen such articles. Bleck. That’s not what it’s about. It’s about including everyone. It’s about letting people consent to when they’re spending their limited mental energy on heavy topics. It’s not about avoidance. These kinds of articles are a real nuisance because they have added a layer of misplaced shame to the issue.

    I’ve also heard people use “I am triggered by…” as a way of making an I-statement rather than telling a person they’re wrong for saying or doing whatever they’re saying or doing. Like, ” I need you to not say or do that around me, because of my needs, not because you’re wrong to say or do that.” As a way of navigating seemingly conflicting needs without blame. Perhaps there’s a better way to say that, but I think the content of what’s being attempted, by saying that, is good.

    I really like that the conversation has been opened up.

  • One one hand, I am adamant about some of the things you are saying, especially when it comes to euphemistic terms that misrepresent what’s actually going on with regard to consent, ex. “seclusion” and “assisted outpatient treatment,” and where we have terms that portray the person who is having feelings, as being the problem. I LOVE your article. Your thoughts about language are right on.

    On the other hand, I want to speak to something that some members of our community sometimes do with this type of information. I don’t want your brilliant ideas to be twisted into something awful. The next two paragraphs have to do with that.

    It’s about THINKING differently, not just using different words, and I want us to be thoughtful about the extent to which we nitpick at each other about exact wording, ignoring the content of what the other person is trying to say. It can be a minefield of every possible word I can think of, being wrong in the view of some people, for some reason or another, to the point that it’s impossible to ever say anything about mental health. As a person with a language difficulty because of a brain injury, I find it difficult to have conversations about mental health. I think for myself; I don’t parrot other people’s ideas. (A lot of people parrot talking points about anti-stigma or Marxism or RC theory or whatever else; I don’t; I state my ideas I have thought of myself.) I have found that a fair amount of the time, if I say anything in a conversation about mental health, I then get endlessly harangued about the exact words I said, not being good enough. It is hugely laborious for me to put words to my thoughts, at all, and then to be dragged into fielding endless haranguing by multiple people, on and on and on, just because I tried to express an original idea….it’s exhausting, especially for a person with a brain injury. I end up just not wanting to participate in anything having to do with “mental health” in any way at all, because the people who are supposed to be on the same “side” as me (whatever you want to call us), pretty much destroy my mental health whenever I try to participate. I know I’m not good enough. With a brain injury, I am not able to function well enough to do anything that matters to me in my life. Including contributing to the movement. But just stop. It consumes what little energy I have left, after the effort I made, to contribute something.

    So yes, lets develop a keen awareness of language, and lets use it to the best of our ability in how we, ourselves, speak and write, and not as an excuse to slam others for speaking and writing imperfectly. Let’s appreciate the things people do contribute, and not slam them for the ways in which their efforts aren’t good enough for us. If people say the wrong word and we have an idea of a better one, maybe we can make a suggestion of a different way it could be said, privately, in a truly kind and considerate way. (Not a fake-kind way that is so common among us. Be sincerely kind, or don’t say it at all. I think if you’re not able to muster truly kind intentions, it’s better to wait until you can. I’m not talking about perfect words, here.) Let’s not be publicly shaming each other for imperfect language.

    I think part of it is we need to resist the temptation to use just popular accepted words for things. Anytime I am about to use a piece of common mental-health terminology, I will stop and ask myself, “Is that really what I mean to say? Is there a word that says it with more accuracy?” I will think of my own words for what I mean, instead of using common terminology. Maybe I will go ahead and use my own word, and take the time to explain it, too.
    If we try to make our words reflect our intentions, we will gradually find the language that truly says what we mean. It won’t always be perfect, especially at first. And we may have to keep explaining, so that we are understood by some of the more mainstream people who we want to get our ideas across to.

    OK here’s another thing I struggle with- the problem of being “inflammatory” and having mainstream people stop listening. I will give you an example. When I was trying to educate the Vermont legislature about the problems with forced drugging in institutional situations, I used the term “forced drugging” rather than “involuntary medication” because I thought it was more accurate. But some people who I really wanted to get to understand my ideas, were alienated and stopped listening because they found my language inflammatory and they saw me as not sympathetic to their point of view and not respectful of… yada yada. So then I wonder if we need to use different words when speaking to different audiences. If we want them to listen. If we use the euphemism and they listen, it’s better than if they don’t listen, if they’re the legislators who will vote on it. Presenting scientific studies about the outcomes of AOT, to legislators, is one area where this might apply. If we call it AOT, they might be more open to learning about the content of what we are saying- that the outcomes aren’t very good. If we call it “forced drugging in the community” or something like that, that might feel better to us, but if it causes the legislators to dismiss us as biased and not listen, we’re not actually succeeding. Though it is very important that legislators not be misled by the euphemistic term, and that they really understand that it is actually involuntary consumption of these substances. And I think it’s more accurate to call them “drugs” than “medications,” because they don’t treat any underlying condition; they simply have a psychoactive effect (that’s a reference to Joanna Moncrieff and I can support that scientifically with other references, such as Grace Jackson). Maybe if we explain it, it will be less likely to be dismissed as biased or inflammatory….but, just, we have to think of who it is we’re trying to communicate to, and make sure we’re accomplishing that, not just sort of recklessly using whatever language we think is great for our own reasons. (I use the word “recklessly” to mean “without regard for the effect it’s having in the actual communication we’re having with the actual people we’re trying to reach.”)

    We really have to re-invent language a bit, perhaps. Maybe we can even make a dent in the popular and accepted lexicon.

    I just spent an hour and a half writing this. I am trying to contribute something. Please be respectful.

  • I don’t think empathy is all that valuable. It’s sort of a fad, to emphasize it so much. I think it’s possible to care and have compassion, without empathy. I can care about and have compassion for people who are in situations I am not familiar with, where I don’t know how they feel. People living in Yemen for example. I have compassion for them. I don’t know what famine is like.

    I think there’s a lot of fake empathy, where we tell ourselves we’re empathizing and really we are making up our own idea of how the person feels, and projecting it.

    Anyway I think caring and compassion are the most important. I think there’s a reason why compassion is discussed extensively in Buddhism and empathy isn’t mentioned.

    Empathy is better than clinical detachment. I think the introduction of empathy as a concept, is a step in the right direction in the mental health field. But it’s still missing the mark.

  • What if this is a step in a good direction? If minors’ consent is meaningful then their non-consent is also meaningful. A corollary to this bill is to make it so that if minors want to refuse treatment someone is trying to force on them, they get a court hearing like an adult does. Even if the entity doing the attempted forcing is their own parents, or the state while they are a ward of the state.

    A bill making consent or lack thereof, by a minor, in the case of mental health treatment, is a much needed thing.

    Even if the rhetoric surrounding it is not very good.

    I would worry that minors could get coerced or tricked into consenting to treatment though. I would like to see an informed consent clause where there is a strong requirement that they give the minor full information about the pros and cons of the proposed treatment, and information about other good treatments for their problem and how they can be accessed. Of course, this type of requirement is not the case for adults. Maybe the first step in this direction will be to make it be the case for minors, and adults will be added later? Let’s use this as a springboard toward progress.

    I see a lot of cynical and angry comments. I urge people to be constructive. Propose a course of action? We need to be active in doing constructive things. If all we do is be negative and complain, we won’t be powerful in creating what we want. We can be powerful.

  • I have a good friend who actually is a real doctor, an orthopedist. He always listens closely to the patient, and adapts his advice to what the patient values and enjoys in life. He helps the patient understand their condition and the various options for healing it, so that the patient can make good decisions about it. Often, he tells patients they can fix their problem by doing a certain exercise every day, or avoiding a certain activity for awhile. He almost never prescribes a drug, and he is very careful not to do any unnecessary invasive procedures. Oh yeah- and his diagnosis process includes finding out what happened that created the problem, as well as performing whatever tests are needed. And he knows how to say, “I don’t know” when that is true. That is what a doctor is. He happens to be very bothered by the field of psychiatry in that they don’t follow anything resembling the ethics of medicine.

  • How they define “real doctor” is screwed up. Getting people to take drugs does not make one a doctor. Skillfully, correctly figuring out what is going on with a person, and making the solution accurately fit the problem, and behaving ethically, including avoiding unnecessary or harmful treatments, is more like it. Diagnosing incorrectly, and prescribing, is not medical practice.

    Legitimate diagnosis in all other fields of medicine, includes an assessment of mechanism of injury or mechanism of onset. Psychiatrists don’t even care about that- all they care about is symptoms. Imagine if an orthopedist behaved like that. They would lose their license pretty quickly.

    Are psychiatrists doctors? Not in the slightest. They are drug pushers, not much different from the person in the street trying to convince you that you would feel better if you took heroin or cocaine or whatever else. In fact there’s not much difference between ADHD and cocaine.

    Sluggish Cognitive Tempo could be a new iatrogenic disease that happens as a result of taking all these other drugs.

  • Also: Regressed behavior is a normal, almost universal, phenomenon in traumatized kids. They especially do it around people they feel safe with.
    If she is displaying regressed behavior, the most likely reason is she has been traumatized. (By BCH?) And she would mostly do it around people she feels safe with. The parents don’t “cause” it. They are people she feels safe with.
    This isn’t rocket science. Anyone with a basic understanding of trauma in kids, would know this.

  • Let’s say that Justina really is too overly preoccupied with her physical sensations. If that were true, what would be a good way to help her with that? Lock her in a psych ward for a year, with no education and only minimal medical care?

    Just making sure she has support people other than her parents, to talk to about what she is going through medically, would probably do the trick. (At 15, teens do need support people outside of the family.) Even if you were to believe them that Justina is over-focused on symptoms, the rest of their behavior is still really ludicrous.

    Or, let’s say that the parents really are over-exaggerating Justina’s problems. Justina is 15 years old. She can talk. The doctor could simply talk with Justina and make sure to get her view, separately from her parents. I had a serious injury when I was 15- the doctor talked with ME, not my parents, about it, to get information. They can also do tests to detect the physical problems. The parents could then be offered counseling and perhaps a support group of other parents of children with rare conditions, to help them relax about their child’s condition.

    Clearly, these are caring, well intentioned parents, dealing with a scary and little-known medical condition of their daughter, and this is a teenager going through a scary and little-known medical condition. Some support for all, with that in mind, is what a competent, ethical medical professional would pursue, if in fact the dynamics are what are being portrayed by BCH.

    BCH’s and DCF’s behavior is absurd, even if you agree with their assessment of the situation. Perhaps they are the ones who are abusing by proxy, and the whole thing is a projection? Perhaps this is systematic, with lots of kids?

  • Implicated? Did they actually perform autopsies and determine the causes of death? My sister was diagnosed with “schizophrenia” and died a sudden, mysterious death. The assumption was made that it was a heart attack. At autopsy, it was found that it was a pulmonary embolism, which is a side effect of the Risperdal she as taking. How do they know what the causes of death are and how many are drug related?

    If there were a policy that all people taking psych drugs must be autopsied when they die, to determine cause of death, I bet we would learn a lot.

  • Yes, we need to generally get better at natural therapies. And yes, the psychiatric drug scam ruins the credibility of the other pharmaceutical products that are controversial. I am not sure we should move toward no vaccinations, but I am sure that the credibility of vaccinations has been hugely damaged by the demonstrable fact that the psychiatric drugs are completely a scam. Peter Gotzsche and Grace Jackson have done a great job exposing that. Knowing that, one doesn’t trust the pharmaceutical companies with anything, ever. I don’t know what the truth is, with vaccinations. Maybe they are a good thing and we are not open to that possibility because we’re so burned by psycho-pharmaceuticals. Maybe they are a bad thing. I don’t have any illusion we’ll ever find out the truth. OK then why would I put anything in my body that I know I won’t ever hear the truth about? The vaccine question is such an important question to get right, with all these immunocompromised cancer survivors mixed in to our society, and yet we know that the pharmaceutical companies are lying crooks.

  • Progress is not linear.
    The regressive people are getting a little desperate, as shown in the rudeness.
    This happens in every movement, the movement to end slavery, the movement for gay marriage, etc. The “bad guys” do desperate things, and in the long term, progress continues.
    The “bad guys” maybe feel threatened by the progress, so they do especially desperate things…
    The people who are fighting to make things right, just keep on, and eventually win, like Gandhi said.

  • Thanks! I also realize that moving when she was 12 and I was 10, and leaving our friends behind, was hugely traumatic for us, and we never said that to our parents because it would break their hearts- my dad needed to move, to have a good job, to support the family and stop coming home from work steaming mad from work and taking it out on us kids. How he could stop was to get a different job. Which meant moving. I am sure my parents did not know what school was like for my sister, including about that teacher who locked kids in the closet. So some of it is lack of knowledge of the events, and some of it is lack of realizing that known events were traumatic.

    I keep thinking about Kate, and I am bothered by all this stuff being said on behalf of a cohabiting daughter who supposedly is doing well and does not have enough internet access to say these things on this site, herself. It doesn’t add up. I don’t know what to make of it. It goes along with a general pattern I am noticing, that parents say these things on behalf of their grown children, but I don’t hear people say, in the first person, that forced drugging is a good thing, other than in rare instances where they are in a position where there is an ulterior motive for saying that. Therefore I think that at least in the vast majority of instances, the parents have a tendency to believe these things when it isn’t the case for the person going through it. And it’s traumatic for the person going through it, and the parents aren’t aware of that. And many things cannot be said for social reasons in the situation, or aren’t remembered (drugs mess with memory), or are beyond words to articulate.

    These people in group homes without access to the outside world. We saw one written testimony from a person in a “secure residential facility” in Vermont, written to the state senate health and welfare committee in reference to an expedited forced drugging bill, where he said he was miserable and the treatment was awful and the effects of the drugs are awful, and he described in some detail, multiple incidents of forced drugging, all of which were unnecessary and horrible. There is no reason to assume that people in this situation are being benefitted by forced drugging or that they aren’t capable of benefitting from other approaches. Increasing the ability to subject people to this, while decreasing funding for protection and advocay, isn’t pro anyone. It’s anti-human. It’s pro drug company profits, that’s about it.

  • Parents sometimes don’t realize or don’t want to acknowledge how traumatized their kids are. My sister was bullied a lot in school, by other kids, had a teacher in grade school who locked kids in closets on a regular basis and one kid went unconscious in the closet (I learned this from one of her classmates after her death; I never had that teacher), was bullied viciously in high school, also had some difficulty socially because of being hard of hearing, was being bullied really badly by an abusive professor at the time she first began hearing voices. In addition, my parents spanked, which can be a severe sexual trauma to females (creates non-consentual intense sexual stimulation that’s of a negative kind), and my father sometimes flew into rages and did dangerous things, something my father acknowledges by my mother still does not, even though they are happily married. And my brother was a bully- I don’t know what he did toward her, but he vandalized the phone line to my bedroom and tried to push me down the stairs to get the first shower of the morning (and I had a reconstructed knee which couldn’t be operated on again, so this was risking permanently crippling me). My parents would not have ever said my sister was traumatized. They thought her “schizophrenia” was genetic. My brother still believes that and becomes a bully anytime I expose him to information that might suggest otherwise. So here is my point. Parents of traumatized kids who develop psychosis, don’t necessarily understand that their child is traumatized. The fact that parents and their adult children have these relationships where the parents don’t understand what the child is going through, is a demonstration of how much Open Dialogue is needed. The family members need to communicate with each other. What we have now is a paradigm where the Family Member is supposed to be the “caretaker” and the enforcer of medication. What we need is teamwork, people being partners in creating recovery, where all people involved really listen to each other and work together and all take responsibility to create a good outcome, and all recognize where they have some responsibility. This includes the person at the center of concern and all the family members involved- and I love how Open Dialogue includes many people who are not family members- friends, employers, etc. This conversation on this website is a demonstration of why Open Dialogue is needed. Open Dialogue is not an anti-medication model; it puts relationships first and gets them right, and goes from there, and lo and behold one result is there is less dependency on medication. Which does lead me to believe that part of the reason for such heavy dependency on medication in the US has to do with not enough resources and attention are put into really getting the relationships to an optimal level.

  • Sorry if I am posting too many times but another thing I want to say is I don’t think peers should be advising people to go off drugs. Going off drugs is a very careful decision and if people do it, it has to be done gradually and with a lot of emotional and medical support. When people express skepticism to me, about their meds, or if I see a strong reason why I think someone’s meds are a problem (they are having an adverse reaction, or they have a strong contraindication such as a brain injury), I refer them to a doctor or other professional who is an expert on that and can help them with the decisions and details. I might refer them to a doctor who can test them for medical problems that cause psych symptoms if I think that’s likely. The best thing peer support people can do is be there as peer supports. That makes a huge difference. And research in your community, who are the best health care providers to refer people to. If there are none, start developing them. Find the best possible ones and start educating them. Make sure there’s health care provider resource for people who want to discontinue the drugs. Don’t pressure people to go off. The worst thing is to go off these drugs too quickly without the needed help.

    Oh and another way to help with this Murphy bill is to spread the word that Adam Lanza was on a psych drug (see the Ablechild website- their freedom of information request was refused because people might stop taking their meds). This bill is using the fact that this was covered up.

  • Some things to point out about this Murphy bill. It is heavy on evidence base AND it contains forced outpatient treatment. So one thing to do is point out that there is no evidence base for forced outpatient treatment. Another thing is to show an evidence base for the good programs SAMHSA currently administers, which include peer support and others, and for protection and advocacy. Amendments need to include to delete the part about forced outpatient treatment (near bottom), decreasing funding for protection and advocacy (near bottom), and the prohibitions on SAMHSA (bottom two things). (In parenthesis are locations of these details, in the congress.gov description referenced in my previous post.)

  • We defeat the Murphy bill.

    And we have the dialogues with people on all sides, and we learn from them. We seek to understand the issues from all sides. We take it to the press, the newspapers, the radio, the TV, the internet. We communicate with our reps and senators in Washington. We get others to.

    A big part of the problem here is that the alternatives are not strong enough and not prevalent enough, so many people still have the experience of the drugs being the only life raft that’s really there. We need to strengthen and develop the alternatives to the point that they are really enough. We are far from that. We are at a turning point, where we will either go down a very hopeful road or we will go backward.

    We need to, as a society, learn how to care, really, and not just when it’s convenient, so that family members of people with mental health struggles are not overburdened. Asking peers to pick up all of that slack isn’t a workable idea. Peers care deeply but cannot provide endless resource, and have their own struggles and limits. All of us need to care, and do our part. Everyone is responsible for creating the world in which everyone, including those with mental health struggles, can thrive. One experience of mine to illustrate this was a client I worked with once, was banned from a local grocery store for behaving in a bizzarre manner. Not stealing, not hurting anyone, just doing things like staring at the shelves and sort of browsing like in a library, to familiarize herself with the contents of the grocery store. The store was so weirded out, they banned her. It’s behavior like that, that leaves the “carers” so burdened. If everyone else in society avoids a person, it is left to family members. If everyone does what little they can to be supportive, the family members’ jobs are much easier and they have the space to think, rather than just constantly overworking. When they have the space to think, they can think new thoughts, think differently than they did before. Peoples’ ways of thinking don’t transform much when they are constantly exhausted from overwork.

    (About the person who acted bizzarrely in that store: It turned out she had been in mental hospitals for many years, since she was a child, and she was just learning about grocery stores as an adult. If the people had had any empathy for what it might be like for her, they would not have been suprised by her behavior- it was actually quite natural given her life experience.)

    My sister was killed by a psych drug. At her memorial service, the large church where it was held, was packed with her friends. Though her death was tragic, her life was filled with the support of many people, and I credit all of them with the unusually good quality of life she was able to have, for a person who chronically took an antipsychotic, and also for the fact that she didn’t have a lot of repeated hospitalizations and medication increases, which is unusual for a person who chronically takes meds. Her quality of life was miraculous, and I thank every one of the hundreds of people who decided to be her friend, or to hire her for a job, or to accept and appreciate her volunteering services, rather than opt for their own convenience. From the comments at her service, I know that they received as much as they gave, and my sister was a wonderful addition to their lives.

    We don’t talk much about the bystanders / friends, the people in the community and what they do or don’t do, but I think that’s a big part of what creates quality of life- or does not. And quality of life is what matters most. Symptom reduction is not very important.

    One thing I am wondering, about Kate, is, why is the Murphy bill thought to be needed? I don’t see any deficiency currently, in access to the types of services it includes. Where the deficiency is, is in access to other modalities of mental health care, such as better psychosocial supports, better peer support, better diagnosis and treatment of medical problems that have psychiatric seeming symptoms, and so on.

  • I have gotten myself a position as a columnist with a local newspaper and I write about mental health more than any other topic. I have also written in 3 other newspapers and 1 online blog. I also contact my state and US legislators about mental health legislation. I go to DC often, for another reason. Is there something I can do, while there? Can citizens get access to congress, the way we can to the state house in our state?

    Speaking of Washington, lets do a march on Washington.

  • Steve, I love your writing and look forward to seeing more of it. You might enjoy the work of Candace Pert, who in fact demonstrated in neurobiology that the mind is a different entity than the brain, and exists throughout the body. Her neuroscience research further demonstrated that psychotropic drugs is a very inappropriate approach when people have difficulties with thoughts, emotions, and choices. I disagree with Szasz in that he has an attitude toward people with substantial struggles in this area, that they are malingerers. I do not believe that. My sister was diagnosed as schizophrenic and she was a “psychiatric patient” for many years until she died because of a drug side effect. She was not a malingerer and her difficulties were not due to anything of that nature. She had real struggles, and she worked hard to overcome them the best she could and to contribute to the people around her the best she could.

    I think there are probably some biological correlations with what we are calling “mental illness” because it’s stressful to live in society when you are functioning in a way that people don’t understand, and stress causes biological changes throughout the body. The existence of biological correlations would NOT mean that “mental illness” is biologically caused. Cause and correlation are two different things. And, lots of simple, natural things have huge effects on our biology and neurobiology, so any biological condition that is a perpetuating factor could most likely best be addressed that way. For example, there is lots of research showing exercise to be more effective for improving depression than any antidepressant drug. A rare exception to this is infection. There are infections that have depression or psychosis as symptoms, and in those cases, a drug that kills the infecting organism might be the best treatment. (This is often missed by “mainstream” psychiatrists and “alternative” mental health professionals alike. Infections like hepatitis and GI tract infections can have seemingly “mental” symptoms as their primary symptoms.) Another rare exception is that certain kinds of cancer can have “mental illness” symptoms. This includes breast cancer and brain metastasis of cancer. Physical disease as a potential cause, should always be investigated. In that sense, there is sometimes a biological “cause.” But the ideas of “chemical imbalances” and differences in brain sizes and structures and genetics and all that stuff- that is all based on fake science. There is no real reason to believe any of that stuff, and plenty of reason to understand that simple, natural things like relationships, arts, exercise, contact with nature, emotional expression, etc, resolve the vast majority of these problems. We can look at the benefits of these activities on a neurobiological level and we are sure to find things. Using neurobiology as an excuse to somehow manipulate the “conclusion” that psychiatric drugs are necessary, or even beneficial, is a huge contortion; actually, multiple false contortions of pseudo-logic are necessary to arrive at that idea.

    If science is used with integrity, it establishes similar conclusions to what the people in the anti-biopsychiatry camp have been saying all along. The problem with biopsychiatry is that the science has not been done with integrity; it is fraudulent “science.” Do not be afraid of the real science.

    And we need to recognize that we all have struggles and none or us are inferior or superior to others. We need to accept and try to understand each other. And we need to always see complete full recovery as a possible outcome. It does happen quite often, and more often when people are respected and understood and are not given drugs or stigmatized.