Mahatma Gandhi said, “First they ignore you, then they laugh at you, then they fight you, then you win.”
With Pennsylvania Republican Representative Tim Murphy currently trying to push his Murphy Bill (HR 3717) through Congress, the battle is clearly on.
The so-called Helping Families in Mental Health Crisis Act, or Murphy Bill HR 3717, is a misguided response to national tragedies; one that would set back proven, positive, recovery-oriented, community-based, peer-initiated mental health innovations by 40 or 50 years. The bill is in direct conflict with the 2003 President’s New Freedom Commission recommendation to promote recovery and consumer involvement to help transform our broken mental health system.
While the bill purports to support the use of evidence-based practices, in actuality the legislation would effectively eliminate solidly evidence-based, voluntary, peer-run mental health services and family supports that have been successful and popular.
The Murphy Bill could also be in violation of the Supreme Court’s 1999 Olmstead decision, as it advocates returning to an era where people diagnosed with serious mental health conditions were institutionalized, sometimes for life, instead of living in the community. In fact, because Assisted Outpatient Commitment is central to the Murphy Bill, even those of us that currently live in the community could be subjected to forced treatment in our own homes.
Recent tragedies have lead many to push for a fear-driven approach to “mental health,” an approach based on the false assumption that because anyone who acts violently can potentially be described as “mentally ill,” anyone who can be described as mentally ill therefore can be assumed to be potentially violent.
Basically, those with mental health labels have been used as scapegoats while the real reasons for our national crises of pervasive violence and poverty continue to go unaddressed. Despite this, and despite the fact that evidence suggests that people actually avoid treatment when it is forced upon them, the provisions of the Murphy Bill would exchange low-cost, community-based services with good outcomes for high-cost yet ineffective interventions. The bill eliminates the Institution for Mental Disease (IMD) exclusion, making it legal for psychiatric hospitals to be reimbursed through Medicaid, thus increasing rates of hospitalization. If passed, the Murphy Bill could return our country to an unprecedented era of re-institutionalization which, based on current statistics on forced treatment, would likely affect those of low-income and people of color disproportionately.
As with other fear-based approaches, the Murphy Bill would eliminate human rights protections that Americans have worked for centuries to create. Specifically, the Murphy Bill would dismantle the rights and protections currently outlined in the federally mandated Protection & Advocacy (P & A) System. In addition, the bill aims to decrease SAMHSA funding for the consumer-run national Technical Assistance Centers and statewide consumer networking grants, effectively eliminating federal support for peer-run initiatives.
Murphy and his supporters are also targeting the national Alternatives conference. Alternatives is now in its 29th year and is the largest national conference that is run by and for people with lived experience with mental health issues. Besides featuring the leading mental health experts from around the world in a premiere learning environment, Alternatives celebrates how far we have come in this country, with very limited funding, in developing peer-initiated, recovery-based innovations that work.
Our critics say that we aren’t reaching those who are most in need, the most severely affected folks. The people who attend Alternatives and who benefit from peer-run initiatives through the country tell a different story, though. On a personal level, if it wasn’t for finding peer communities and peer support, I would likely still be in a hospital and would lead a much different life. Instead, I am happy and healthy, married, a homeowner, and the proud father of two.
We are the people who have been written off, who have the most severe diagnoses, who have been in hospitals. We are also the people who found our way to recovery, a life in the community, and are now reaching a hand out to others so they can do the same.
And now, we are in the fight of our lives.
* * * * *
I suspect the purpose of this is to make those labeled with a mental illness the fall-guys for gun violence. Instead of having reasonable gun control, how about a little kabuki? Guns don’t kill people, mental illness kills people, sometimes numbers of people at once, right. “Mentally ill”— scary. Guns— not so much. Guns don’t kill people— mentally ill people kill people. And automatic assault weapons. With high capacity magazines. And Teflon coated bullets.
Better to stigmatize and subjugate people who have been then the victims of psychiatry and other forms of egregious abuse than to have the reasonable gun control laws that nine in ten Americans want so that violent predators like domestic batterers cannot easily buy guns to kill people they can’t control. Wait— do you see a pattern here? I do.
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Yeah, how the mentally ill are super dangerous can be just seen in the last series of disturbed people dying in prisons or just straight being shot or beaten to death by police for no reason. To make your point even stronger: domestic abuse is significantly linked to mental illness but not so much in the abusers as their victims. Well, that’s really convenient I suppose…
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Your critics say you aren’t reaching those that are most in need? That’s because you aren’t. Besides the jail/prison system, families are taking care of the most severely affected folks. Peers have come to my house when my daughter is manic. They stayed with her for 30 minutes. Psychotic mania can last months. You don’t want her in they system involuntarily but you’ll only give her 20 minutes of your time? Another time, we had a peer come to our house to do a home visit who wouldn’t even speak to my daughter. Another time, a peer at a WRAP class encouraged my daughter to go off meds leading to a psychotic episode that did exactly what you say you’re against…another involuntary commitment. Every single one of the peer run organizations in my state only allow people to be there when they’re doing well. A man was recently kicked out of one for…wait for it…shouting. Shouting? You’re married and a proud father of two? I know many many other families who would like that for their loved ones, but they’re too sick, at least for now. The only help we get is from the medical system. It’s the only help that works. Rather than telling us…in detailed precision…exactly how we’re supposed to help our loved ones absent involuntary treatment, you advocate against the sickest people who only have their families to help them. It’s really rather cruel.
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Kate it’s great to have your perspective on board here. I agree that there really aren’t comprehensive alternative systems in place for helping people in severe crisis, going through extended psychosis and mania. And when someone has to respond to a family member in an extended struggle who has acute symptoms, it can feel insulting to say, well whatever you do, don’t bring them into the hospital.
I think the main point of this article is to point out the serious problems in forcing someone to take a drug against their will even while they have returned to the community. From certain family members perspectives, it can feel like needed help. But for the individual themself, it is state mandated drugging with neuroleptics that have harmful side effects, long term health implications and problems with withdrawal.
On a more practical level, what happens after that commitment process is over? They can go right back to stopping their meds. But now 6 months later, they have become so used to heavy sedating drugs, that they are likely to experience extreme states of psychosis when they stop.
Though I agree with you that it is basically mean to tell someone not to take a family member into the hospital when there are simply no other real choices. But it is also cruel to have the State make someone take a harsh set of drugs against their will for an extended period of time.
My only thought on this is that even if the hospital is the only main answer right now, many people are working hard to create an infrastructure for alternative crisis care. In the mean time, I encourage hospitalized individuals and family members of these folks to act as strong advocates to become fully informed, to push back against unneeded or overezealous polypharmacy drugging, and to fight for their welfare and safety in these settings.
Anyway, hope you add more to the ongoing discussion. Thanks for being here.
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Jonathan, I so much appreciate your thoughtful, balanced reply to Kate. And I also welcome Kate’s very down-to-earth, obviously heartfelt comments. I think we need this kind of dialogue here if we’re going to do more than “preach to the choir”. I have also experienced “up close and personal” the gut-wrenching dilemma of a loved one in the throes of psychotic mania. There are no easy answers. To let the loved one “fend for herself”, so to speak, would clearly have put her in harms way based on the particulars of her psychosis. On the other hand, the second time around (“once burned, twice shy”) we had extreme concerns about what was going to take place in the hospital. And the bombarding of her brain with a dizzying array of neuroleptics, benzos, anticonvulsives and other drugs is exactly what happened–with little to no understanding of her individual history. Athough her sanity was eventually restored, i continue to believe it was largely in spite of rather than because of the drugs she was coerced to take, contrary to what would have been done if we had the alternative type of crisis care you mention. And she continues to be saddled with the dire consequences of these brain and body-altering substances. This raises another thing that i believe is desperately needed: detox centers for those “stuck” on heavy duty psych meds and who want to at least make a decent, supported try at getting off in a careful manner. Dan Mackler has written a nice piece about this somewhere, in terms of what would be needed to do it effectively. After all, who would expect a heroine or cocain addict to “just say no to drugs”? We have all kinds of detox/rehab centers for people hooked on street drugs, but virtually nothing for those hooked by the white-coated drug pushers!
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May I just add: it’s not only the drugs. There are far worse things that happen to people in psychiatric hospitals, including physical and sometimes sexual abuse. Some forms of this abuse are legal in certain places. Things that according to UN constitute torture: solitary confinement, physical restraint, forced feeding. The trauma of such an experience, even short lasting can cause a PTSD in a completely “normal” person. Now you want to put that on the individual who’s already in distress? How is this helpful?
When it comes to violence: I am not sure if that’s indeed true but I’ve read something that just before the Newtown shooting Adam Lanza was in a lot of distress because his mother wanted to institutionalize him. While it’s impossible to say that he would not have done what he did if not for that threat I believe that the very threat that comes with coercive psychiatry is enough to stop people from ever wanting to talk with someone or seek and accept help when their problems are maybe not severe or chronic enough to prevent meaningful recovery.
I recognise that living with someone who is “mentally ill” may be a challenge and there needs to be some system to help those whose families cannot or will not take it on their shoulders (in fact asking that of a family is a lot anyway). But the alternative is not to dump someone in a hospital and hope for the best. If one would give money to employ full time workers trained in alternative approaches who could work with the person and their family/friends over extended periods of time it could be a real game changer. Expecting that from the peers who do it in a voluntary basis is unrealistic.
One more think: psychiatric hospitals if seen as places where people can go and have a break from their live for a limited period of time in order to work things through may not be a bad idea. However, one has to take any type of coercion from that on one hand and also make sure that they don’t turn into a long-term easy solution on the other. The hospitals as they are now are not fulfilling this function, not even close. They are in fact another incarnation of prisons disguised as medical facilities.
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“psychiatric hospitals if seen as places where people can go and have a break from their live for a limited period of time in order to work things through may not be a bad idea.”
This is exactly what I’m trying to do in Phoenix. I am in the process of opening up a home for women experiencing a mental health crisis. I want it to be for women who feel like their lives have become more than they can handle and need a break to work through things like trauma and possibly psychosis.
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That is great work. But for things like that to be effective there has to be a wider social network of support. People won’t be willing to use services like that unless you make sure that they don’t lose their jobs over it or someone is there to take care of their kids and pets and all that. That is also what is a problem with current hospitals – they lock people up and don’t care how that disrupts their lives. You have to make sure that people have a life to get back to when they recover from crisis and they don’t have to rebuild from scratch.
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One more thing to add: personally, no matter how tough it would be I’d never, ever take anyone I love to a psychiatric institution, at least not the way they are now. The things that are done to people there are torture and I don’t think there is an excuse for it.
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Hi Kate:
I too am glad to have your voice in this, I hope we can learn from each other. Having a respectful dialogue about really intense issues can be difficult, but it seems everybody is doing that. I believe that I have a lot to learn from family members like yourself, so it doesn’t have to be a “fight.” I’m sorry you had a bad experience with peer-run programs, this is unusual for me to hear as I’m usually hearing from families that are having a terrible time in the traditional system and are starving for alternatives. I hope you were able to give them constructive feedback, as I have found peer-run organizations to be much more responsive overall than the hospitals to feedback. I agree with you that our peer-run programs need to be able to work with everybody, including the most in need.
I would contend, however, that, overall, given the minimal amount of funding peer-run programming receives when compared to the traditional system, we are doing an amazing job of helping people in the most dire of circumstances turn their lives arounds. The problem is a lack of funding and infrastructure to support these organizations, and what little funding there is would take a huge hit if the Murphy Bill were to be passed.
You say that the hospitals and medication are the only things that work for your daughter. I wonder if you could explain what you mean by “working?” Because it sounds like you have a lot of pain around feelings of wanting her to be able to have children, that the only support system she has is her family, etc. I think this may a fundamental difference in our approaches, where the peer movement sees what “works” as leading to more independence, friends, a social life, a fulfilling job, and having a family of their own, compared to the traditional system’s definition of what “works” that often means more dependence on the system and parents, and while they may “stay out of trouble,” they are not able to achieve a whole lot beyond that.
The last thing I will say for now is that I personally have had three experiences with what is called “mania.” I agree with you that these situations are very difficult for the people surrounding to handle. However, I would argue that these experiences are also deeply meaningful, and one reason that they keep reoccurring is because the person and people around them are so busy trying to suppress them that they never learn about what the root causes are. The root causes are often trauma, but they can also just signify dramatic life learning, spiritual growth, and change. So if the people surrounding the person going through a “manic episode” are skilled enough in approaches like Emotional CPR and Intentional Peer Support (which anybody can learn), and if there are enough supporters, it is possible to help people through even the most difficult of mind states with the added benefit of learning and growth for everyone involved, and lessening the likelihood that it will happen again.
Again, thank you for being involved in the dialogue.
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It’s clear you don’t understand or don’t want to understand, but it was worth a try. I can assure you, my daughter’s psychotic manic episodes were in no way meaningful nor were they caused by trauma. I’ve taken ECPR. Might be fine for people whose illnesses aren’t severe. There is no peer…intentional or otherwise…who could or would sit and be with my daughter for as long as I have while we waited for the system to help us when she was so sick. You and your Mad in America friends can keep advocating against involuntary treatment as I’m sure you will. As one of my mom friends says….we’re mad in America too. We’ll just have to keep advocating against you to save our kids not only from their illnesses, but from your absurdity and cruelty. Thanks a bunch for your concern.
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So why are you here?
You don’t seem to want to really dialog at all. It seems as if you only want to fight. I wonder what your child would say to all of this? Have you ever asked? Have you ever questioned your daughter about what the “treatment” in the so-called “hospital” feels like to her? I’m not trying to be smart. I’m just interested if you’ve ever really talked with her about any of this or if you make assumptions about a lot of things, thinking that you know when you really don’t. Where is your daughter’s voice in all of this.
My mother watched over my younger brother who is labeled as “mentally ill” by the system but has never been in the system. My mother made sure that he never had to experience that. But, she also made sure that she listened to him and what he felt and desired. She didn’t automatically make decisions for him nor assume that she knew what he was feeling or experiencing. She wasn’t paternalistic, or in this case it would be maternalistic I guess. He’s never taken any of the toxic drugs that psychiatry and the drug companies push so abundantly on our society. He’s been very lucky, even in all of his emotional and psychological distress. He never suffered truama as a child, that I know of, but he was very sensitive to life and I think this makes him vulnerable to the distress. He has two sons who also make sure that he will never have to suffer the “treatment” of the system.
So, why are you here?
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Well, you answered my question in your post below. I still don’t think that the answer to all of this lays in more treatment with the toxic drugs that eventually lead to people dying 25 years earlier than they should. There are alternatives out there that are proven to work but the system won’t allow them to be put into place and used because then it would lead to psychiatry and the drug companies having to take a cut in their profits.
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What you guys seem to either not know or are completely unwilling to accept is there are people who are significantly disabled by their mental illnesses and would never get care unless it’s involuntary….hence, all the people involuntarily in prison making deinstitutionalization a total myth. You frame involuntary treatment in the community as if it’s a horrible thing when the reality it’s lifesaving. My daughter was on it for years. During the time she was on it, she framed it the way you do most of the time. But since I love her, I always told her people were just trying to help her. I also explained to her that she wasn’t only person living in the community that had rights and when her behavior tramples on someone else’s rights, someone will step in. Thankfully, her illness relented enough to allow her much needed insight and she now controls her illness herself. She now says that involuntary treatment saved her life. And while portions of it weren’t exactly enjoyable, she can also now see that the behavior caused by psychosis led to some of the things she didn’t particularly enjoy. And she sees that time as a time when people cared enough to make sure she got the care she needed, rather than throwing her in a jail cell or leaving her out on the street. Psychotic mania is impossible to live with and can be quite detrimental to the sufferer with severe tachycardia and other physical symptoms that need medical attention. You don’t ever need to encourage a loving family member to make sure facilities are safe or that our loved ones aren’t over medicated. We live this life every day and probably know more about it than you do.
My guess is that the “infrastructure for alternative crisis care” will only allow those who are able to get there voluntarily. But assuming I’m wrong, what is the point in advocating against us before those places are available? I find it mind boggling that we are in the position of advocating against each other. I’ve been at this advocacy stuff for 10 years now. And for 10 years, people who call themselves advocates for people with mental illness have tried to tell me that there’s no such thing as mental illness, explained the horrors of involuntary treatment to me in much the same way you just did or my favorite…blamed me for my daughter’s illness. I don’t want to take anything away for folks who can advocate for themselves. If you want Alternatives conferences with dancing that makes no sense to me….I want you to have them. I don’t know of any family member who doesn’t agree with me on that. But HR3717 is called the Helping Families in Mental Health Crisis Act for a reason. Families have been asking for help for a long time. And the only answer you guys have given us is…….Get lost. So here we are in this rather nasty battle with each other. It is incredibly sad and I will never understand the point.
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Kate,
While I empathize with your anger and frustration, you seem to not be hearing the concerns of people who are against this bill who have been greatly traumatized by involuntary commitment. And yes, it has been horrific for them.
You also act like this is a battle of radicals vs. main-streamers when it is far more complex. In my state, I knew of mental health consumers who were absolutely frightened of the tougher involuntary commitment laws that got passed. I sadly remember one person who was suicidal who refused to tell his therapist out of fear he would be involuntarily hospitalized.
And to just refer to the Alternatives conferences as dancing comes across as extremely insulting even though I am sure that wasn’t your intention. Many people’s lives have been transformed by going.
I am not sure what the answer is but I think we need to start by truly listening to each other and not minimizing people’s concerns. I do agree that blaming you for your daughter’s situation and pretending mental illness doesn’t exist is not helpful.
At the same time, your side needs to understand the horrific fears of involuntary commitment that people have who have been traumatized by this. Listening without judgment is a necessary first step.
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Kate,
I’ve been a “carer” (I actually detest that term) for a decade now for my son, and I fully appreciate where you are coming from. The destruction caused by psychosis is not limited to the individual with the label. Families members are severely impacted, leading to a loss of health and wellbeing for everyone, a lose/lose situation. I fully understand the need for involuntary commitment for some individuals, but history shows how alternatives have been shunted aside, ridiculed, lied about, etc. The only game in town has been medication and hospitalization, regardless of whether or not these two approaches work. Repeat hospitalizations and med non-compliance are an indication that alternative approaches should be tried. In my own experience, it’s not an either/or situation. Many things that helped my relative are considered alternatives, and I’m glad that this kind of information is now more readily available. There wasn’t much around ten years ago. There are many well funded organizations that exist to prevent alternative perspectives from ever seeing the light of day, the only difference is that today, more and more people are ready to fight back. Unfortunately, the alternative side is not well funded because it largely is grassroots.
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Again Kate, glad to have you here and to have your comments. I think there needs to be more comments here from people with your perspective to discuss these really hard issues.
For some background, I’ve worked for the past eight years s a therapist in an inpatient setting in Oregon. Our hospital tends to receive people going through the most severe cases of psychosis and mania. Though I have serious concerns with different aspects of hospitalization, I also understand that it is the main established system for working with people going through severe crisis.
You said some things I really agree with. There are many cases where someone is experiencing psychosis, is in crisis and is becoming intensely intrusive or challenging in the community. I disagree with many people here but I absolutely understand the need for an involuntary hold and temporarily staying in a locked unit that is not a jail.
But this is where the problem starts. Doctors are independent professionals who then have very different ideas about how to “help” someone in crisis. But generally the move has been towards polypharmacy (antipsychotics, mood stabilizers, benzos, antidepressants) medication that lead to long term mental and physical health complications.
I think the “soft” reform many of us here would like is to look at starting people who have just had a first break on a very low dose of meds, or perhaps none. There is substantial evidence that this can be more effective long term. And for those already in the system, the hope would be for tapering down or off of these strong drugs that can lead to heart disease, obesity, diabetes, Parkinsonian like symptoms and earlier mortality rates.
Mandating and forcing these drugs on people, while knowing the likelihood of these complications simply seems unethical. However, I entirely get that many families then feel very stuck. Their kids are placed on heavy meds in hospital. Thy leave and then stop the meds, leading to further psychosis and more hospitalization. Forced outpatient treatment seems like a good answer to this.
But as we have seen from research (and I urge you to read Bob Whitaker’s new article out called The Fat Lady has Sung), long term use of antipsychotics leads to further episodes of psychosis, the opposite of hat is commonly thought.
Anyways, your perspective is really needed here. Thanks for talking with us.
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Well, you’re talking about your daughter refusing any help while she was in crisis. I can tell you that is the default that almost everyone in such a distress feels. “Please, only don’t take me to the hospital”, “don’t lock me up”, “don’t touch me”, “leave me alone” – does any of it sound familiar? Well, the truth of the matter is that the way psychiatry works isn’t much of a mystery for anyone, even if they may not have the direct experience of just how bad it can get. That’s why people in crisis don’t want help. In my experience it is not so much a lack of insight (which an incredibly insulting thing to say to a lot of people to begin with) but rather the fear of being stripped of your rights, your liberty, your ability to decide about yourself. And being through involuntary commitment makes most people even less likely to seek help because they had only their worst fears confirmed.
Maybe if being mentally ill didn’t mean automatically turning into a cross between a leper and a dangerous animal people would be more open to receiving help in the first place. Going through these experiences is no fun and believe me most people do want help, but the real help – not being turned into a drugged 5yr old.
I am not extreme, I don’t thing that drugs have to necessarily be banned or that there should be no institutions in which people can seek help and stay for some time when in distress. But the way it is now is wrong on many levels, probably the most important of them that it’s counterproductive. So the constructive criticism is welcome to help to build better alternatives (right now there are not many).
One more thing to add – I’m happy your daughter is better now by any standard she can be but that’s not necessarily because of the “treatment” – it may well be in spite of it. There is a body of evidence (actual peer reviewed studies) that show that most if not all psychiatric drugs for psychosis and depression are at the very least not helpful and at worst they actually interfere with spontaneous recovery (you can check out some articles on this site like: https://www.madinamerica.com/2014/03/fat-lady-sung/ ). So to me it sounds like the alternatives are needed as the current treatment is not a treatment at all.
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Just one more thought I forgot to add: on the prisons. That’s exactly what happens when you just mindlessly close the existing institutions and don’t provide any alternatives. It’s the kind of neoliberal playbook trick: make the system non-functional on purpose and then give some ugly policy you’ve wanted all along and present it as life saving. I’ve seen this being played in many contexts in austerity Europe, e.g. with public healthcare. One first does everything to underfund, destroy and undermine the system as it is instead of reforming what’s really wrong with it and then turns around and says: see, it isn’t working, let’s just push the most radical measure on the book. It was to be expected that just closing psychiatric institutions not followed by shift to outpatient care and alternative approaches was going to be damaging. Especially in the times when the societal pressures are so bad: unemployment, low wages, terrible housing, etc.
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I empathize with your anger and frustration. This polarity underscores the need for reform before bad laws entrench a system that is deficient in parity of care. Problems with the medications themselves and with the lack of expertise to manage them has endangered our daughter both IN and OUT of the hospitals. If the Murphy Bill passes without modification, we will have MORE of the same “one size” , bungling practice. Unless the facts are made known about adverse/paradoxical reactions to these drugs and a more informed and personalized response is mandated, MORE patients will be hurt or killed. It made us sick knowing that our daughter had no place to go but to the hospital where they discounted critical information about her sensitivities to medication and almost killed her. Then they put her through hell, and much of it could have been avoided, but they were too proud and stubborn.
I would like to see every patient who needs a bed , get one and THEN be given personalized care that is truly compassionate, informed , and cautious with the medications. But, the hospitals are overwhelmed and can run more like a corn-chopper without a safety switch, that just pulls you in and spits you out. No other field of medicine does this. Don’t let the Murphy Bill entrench standards of care that are FAR too LOW and even barbaric. I agree , Kate, that your voice is needed. We all bring different pieces of the puzzle to the table.
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OK let’s please take this discussion back to the legislation in question.
Wileywitch is spot on as to the purpose of this bill, which is to scapegoat the psychiatrically labeled. It is a piece of fascist totalitarian doublespeak which needs to be exposed and defeated by all people who have any lingering hope in the triumph of human values over corporate dictatorship.
Psychiatry is NOT a field of medicine, it is a parallel police force and a system of social control.
Part of our problem is that by accepting the psychiatric jargon of the opposition we fall into their narrative, which is a trap we should understand by now. We don’t need funds funneled through the “mental health” system; we have a right to user-controlled systems of support and resistance. The so-called Alternatives Conference itself from what I can surmise is a sold-out proposition through and through, growing out of the mostly successful scheme of the psychiatric industry in the mied-80’s to suck people out of the anti-psychiatry/mental patients’ liberation movements with the lure of money and official recognition. We need to decide what’s more important, the pat on the head from our “therapeutic” overseers or a total paradigm change.
BTW this Tim Murphy clown should disprove the notion that Republicans or the right wing are any more supportive of our struggles than are the hypocritical pseudo-progressives.
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People also tend to forget one tiny insignificant detail (that’s my irony here): the mentally ill are much more likely to have been or become victims of violence and abuse than to be perpetrators. But somehow that seems to be irrelevant while blaming it all on the “crazy”.
Btw, one more information on how broken, corrupt and face-saving is this system: the APA has refused to sanction the psychologist who was responsible for torture of Guantanamo detainees. Institutions like that tend to grow into clusters of self-congratulatory people who put each others interests first instead of ethical treatment of ones they see as “the other”.
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Kate,
I’m sorry for what you are going through, and I believe those harmed by the psychiatric industry do need to work together. But my understanding is this bill will take money from alternatives, and give even more money to a psychiatric industry that has proven itself to be ineffective, harmful, and unethical hypocrites to it’s actual patients.
I understand “psychotic mania is impossible to live with,” for you. But most here, I think, are appalled by the fact it’s been hidden for decades that it is the antidepressants, ADHD drugs, antipsychotics, and withdrawal from these drugs, that actually causes the “psychotic mania.” And I will tell you, the “psychotic mania” will likely end, if your daughter is properly taken off the drugs, and properly supported as she goes through her drug withdrawal induced super sensitivity “manic psychosis.”
As to people telling you there is “no such thing as mental illness,” I don’t know of anyone stating the symptoms of the “mental illnesses” don’t exist. They absolutely do. People get depressed, distracted, or anxious some times, such is part of the human experience. And the antidepressants and ADHD drugs do cause the “bipolar” mania, suicidal thoughts, and other symptoms of the serious DSM disorders. And the antipsychotics do cause the psychotic symptoms, and long run outcomes, of schizophrenia. So the “mental illnesses” do exist. But from a scientific perspective, they do not biologically exist, except as iatrogenically created “mental illnesses.” And this is what is so disgusting to me, at least. Doctors should not be claiming the ADRs and withdrawal symptoms of their drugs are “life long, incurable mental illnesses,” with zero scientific proof. They should not be creating “mental illnesses” in patients, merely because doing such is profitable. But they are.
I don’t know you or your daughter’s situation, so I wouldn’t “blame” you. And I’m disgusted by the misinformation that has been given out to patients and their families by the psycho / pharmaceutical industries for the past 30 years. “Love of money is the root of all evil,” and we’ve all been dealing with a tremendous evil perpetrated against millions by the psycho / pharmaceutical industries. It’s shameful.
And as to the pure hell of having one’s civil rights taken away, being held against one’s will, and “snowed” by psychotic doctors, I’ll spare you the gory details. Except to say I’m glad at least one of the doctors who did it to me, has finally been arrested for having many patients medically unnecessarily shipped to him, “snowing” them, ordering unneeded surgeries, resulting in many patient deaths, all for profit. Not all doctors are decent. Protect your daughter.
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Excellent comments, “Someone Else”; but here’s just a bit of “friendly fire”. While i share your concern about the iatrogenically created mental illnesses and am very thankful for Robert Whitaker’s excellent expose on this in “Anatomy of an Epidemic”, to say that all of what is called “mental illness” is caused by psychotropic drugs doesn’t stack up to reality. If that is so, how do you explain that folks had these same kinds of extreme symptoms long before psych meds ever came on the scene? I believe my own daughter’s initial episode of psychotic mania may have been triggered by her being placed on and then suddenly going off of a benzodiazepine, but honestly i do not know for sure. It certainly wasn’t a drug, street or prescription, that caused the persistent and debilitating anxiety that led to her being prescribed this drug. By saying this, I’m not supporting the bogus and now debunked “brain chemical imbalance” theory of mental illness. And believe me, i deeply regret my part in getting her started with this medication. But i think we need to be honest about what we know and what we don’t know. There is still a lot of unknown about what’s behind the extremes of emotion and thinking many of us experience at different times in our lives.
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I don’t think that the question of “does mental illness exist?” is all that important. Everyone knows that these symptoms exists and they cannot be only caused by psych drugs as they are a recent phenomenon. However, there are things we know:
– different kinds of mental illness, although they tend to have a genetic component, are essentially linked to the social and economical environment of a person: mental illness symptoms increase in people with low socioeconomic background, victims of abuse, veterans, during economic crisis etc.
– although there are people who will quote studies on biochemical or imaging differences between “normal” and “sick” people, it doesn’t really prove much as a) correlation does not equal causation b) you can clearly show that red-haired people have striking genetic and biochemical differences from “normal” people but does it make them ill? (I guess when you label them as such – a good example may be left-handed people who used to be forced to use their right hand)
– a lot of people recover spontaneously from mental illness, especially as they grow out of puberty and early 20s and current studies indicate that this process may be actually hindered by drug-based interventions
So how about concentrate the focus on, on one hand, fighting the preventable causes of mental illness, such as unemployment, domestic abuse, sexual abuse, wars etc., and on the other hand concentrate on building alternative approaches based on identifying, addressing and removing the root causes of the symptoms when they occur? Also, one can teach people to deal with symptoms of mental illness via relaxation techniques etc. and teach people to react to such distressed individuals with more patience and compassion.
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Oldhead, There is no one more pathetically vulnerable and endangered than a young woman who is rapid cycling in a state of mania. Their identities include their relationships to their families. Don’t buy the false liberal narrative that all patients need to be cut away from their families. These young women need protection from predators and pimps. They need supervision 24/7. Yes, I agree that it is mostly iatrogenic action. However, The masses of addicted patients need a functional infrastructure to make any progress toward health. Each of their lives has intrinsic value and must not be devalued as collateral damage in a sudden, rather Marxist, dismantling of services.
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To all of you who claim that all the mental illness is iatrogenic, I don’t agree. The anecdotal observations suggests some type of endocrine response or action. I would say that a culture of kindness that values the creation of healing communities, such as the Quakers started, could be very beneficial. Most of the research has been profit driven with the goal of neutralizing inconvenient people. Chronic stress from coercive public school routines with high mental stress , over-crowded social dynamics, and abnormal sleep rhythms has never been given adequate study, and I suspect is related to the BPD for those with more sensitive endocrine systems. Everyday life is divorced from nature and the physical interface for which our bodies are designed. Keyboards, plastic chairs, and cubicles are the equivalent of the old-school zoo cage. The concrete – asphalt jungles cannot be good for the mental health of the poor trapped there either. Our lousy economy saps the resources needed to create a healthy society. Governmental policies breed more social pathology and children suffer the worst and will send their pathology down the line. Many children are born with brain damage from drug and alcohol abuse. HOW are they going to find their way? The schools don’t know what to do with them, thus the drugging.
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Well, you’re obviously onto something here:
http://www.acs.org/content/acs/en/pressroom/presspacs/2014/acs-presspac-february-12-2014/green-space-can-make-people-happier-for-years.html
The article includes a link to a study showing that living near green areas has a long-lasting positive effect on perceived happiness.
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One more thing, increasing social pathology creates the chaos that big-government, control freaks need and want to impose strict social control. So many of you are not connecting the dots, or else you are feigning ignorance of bureaucratic activism that is tightening control on every area of life and it WILL use psychotropics to repress dissent and freedom. The right and the left of the reform movement need to stop quibbling if they really want freedom.
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Oryx and oldhead, it is very possible that Tim Murphy is sponsoring a hastily written, misguided bill because the psych reform movement has shunned and failed to dialogue with him and other Republicans and Democrats. We are the ones who are supposed to make the effort to talk to these representatives. Would anyone care to come forward and confess how many times they have written a letter or actually visited their representatives in a respectful manner.? My husband and I would know little of psychiatric abuse if our own daughter had not fallen into it. Our culture conditions us to respect professionals and defer to their expertise. Robert Whitaker describes in Anatomy of an Epidemic how carefully the false narrative was sown before policy makers were targeted by the American Psychiatric Association. Psychiatric abuse has been a well kept secret. Tim Murphy’s bill may be the fruit of alienation and isolation.
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Russ’ wife wishes to apologize for mistakenly posting the last comment listed under Russerford. She forgot to make sure that she was on her own account. I am referring to the one addressed to Oryx and oldhead.. I probably made matters worse by “reporting” it. Oh, dear.
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Oldhead, I’m about as conservative as one can be and I’m very sympathetic to your struggles.
Someone Else, my daughter had never taken an antipsychotic med, ADHD med or any other kind of med like that before her first psychotic manic episode. I absolutely 100% believe the medical/genetic/biological basis for her mental illness. We’ll have to agree to disagree. You’ll never convince me otherwise. Her illness hit when she was 19. While she is doing far better now than she has done in the past, it’s been 10 years now. She is quite disabled. She has never been able to move out. I’ve been here for her, on her side and by her side for every step of this journey. Nobody will ever convince me that the meds do anything but help her. She has been prescribed some that didn’t work, cause horrible side effects, etc., but when they find the rights one, for her…..they are quite magical and any side effects are far better than the symptoms of her illness.
AA-no, I was not meaning anything by my dancing reference to the Alternatives conference. It was just the only thing I remembered hearing about it. My point was, if dancing works for you..by all means, do it. I’m on your side. And yes, we do need to listen to each other. And I have always tried. But I will say this, if you’re well enough/sane enough/have enough insight to not get treatment or not admit you’re feeling suicidal due to fear of involuntary treatment, then the involuntary treatment that I/we recommend doesn’t cover you. My daughter just recently told her psychiatrist that she has thoughts of suicide. If anyone would get dragged in for involuntary treatment, it would be her. But that didn’t happen. So I think those fears are largely baseless and are no excuse for leaving so many people so sick and uncared for.
Again to Oldhead, yes, let’s get back to the legislation. What I think is unfortunate is that families had to attack the Alternatives conference, the recovery model, etc. But it was necessary due to the incessant advocacy against us. If not for that, if this bill were presented, myself and all the mothers I know with kids like mine who need involuntary treatment, the doctors, the hospitals and the meds, would be crying foul right along with you. When the peer movement first started, we applauded it. We thought it was great. I even thought it was great the first few times they treated my daughter like garbage. But once the advocacy against our kids began in earnest, we had no choice but to fight back. We don’t like it. We think there’s a place for all patients/consumers/survivors (pick whichever word you prefer). But the advocacy against our kids reached a fever pitch and we had to focus our efforts on them. Again, I think it’s incredibly sad and I wish we could agree that all of our experiences are valid and need to be addressed. But as long as there are people like the author of this piece….healthy married fathers of two ….advocating against our kids getting care, we will be on opposite sides. I network with many many moms of adults who are very sick. Not one of them is healthy, let alone married with 2 kids. They have no peers. Most don’t have cell phones or are on the Internet or are able to advocate for themselves. Some are in group homes, some are in the hospital in CA…some for years due to the lack of outpatient commitment there, some are dead at much too young ages, some have killed others…etc., etc., etc. All they have is us and we won’t desert or leave them to your advocacy which casts them aside.
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you say you 100% believe your daughter’s illness is medical/genetic/biological. The head of the USA National Institute for Mental Health recently said no bio-markers have been found for almost all mental health conditions. So as far as I know there is no proof of your believe – however that may not change your mind. People often believe things that have no proof.
You say your daughters condition came on when she was 19. This is around the age it usually does first occur. It could be that biology makes this happen, or it could be that the struggle to be an independent adult is more difficult for some people than others.
There has been quite a lot of research into the causes of psychosis and generally there are identifiable causes, though not in every case. Generally it is about trauma. Mainly this is ignored. While I have no idea what drove your daughter mad. It maybe that she did not suffer many traumas (we all suffer a few). It is true that the vast majority of people suffering extreme mental distress have experienced severe trauma. Involuntary treatment in a medical model system will not help with this so people are unlikely to recover. Maybe that is why you know so many people who have not recovered, or who are severely disabled, or have killed others or themselves? Their basic problems have not been addressed, instead they have been drugged up to the nines and put in unsupported places such as hospitals, group homes, or living alone in the community.
So I’m all in favor of families like yours getting proper support, but based on real science on what really works. By the sound of it you are not getting that, which is normal in most parts of the developed world.
You complain about Peer Support, well I am not in the USA, I am in the UK but I share your concerns. Peer Support here is pretty much the same as the rest of the psychiatric industry: drugs and a patronizing chat once a fortnight with someone who has little interest in your life. How could it be otherwise if a medical model system pays Peers to do the job? I suspect if it was social workers or psychiatric nurses who saw your daughter instead of Peers you would have received the same treatment. I’ve seen the same thing in the UK where desperate people are fobbed off until they have a really bad crisis, then they get hospitalized and drugged up again.
You also say your daughter was suicidal and not commmitted. Fair enough, but you will find a story on this website of a young woman who was committed because the authorities thought her parents were making her physically ill. There are lots of people who feel very damaged by services and there is nothing you can say to make this not true.
I hope you, your family and your daughter get the help they need and if that at the moment means forcible treatment so be it, but you cannot say that enabling the state to lock her up will not also make it easier for the state to lock up and damage many other people.
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“I can assure you, my daughter’s psychotic manic episodes were in no way meaningful nor were they caused by trauma.”
[…]
“I absolutely 100% believe the medical/genetic/biological basis for her mental illness.”
[…]
“Nobody will ever convince me that the meds do anything but help her.”
Kate, let’s stick to facts:
Your daughters condition most likely will get worse over the years, because of the medication. It might even kill or reduce her life expectancy by 25 years. And you are responsible by convincing your daughter and yourself she has a “mental illness”, it’s only medical/genetic/biological, insisting that she never had traumatizing experiences in her life.
If there really are no psychological and social reason for her “mental illness”, than find out what causes it. Check for food intolerances, vitamin and mineral deficiencies, other reasons that causes inflammation and autoimmune reactions.
But to be honest: I think it’s just the easiest way for you to handle the situation. It’s a medical problem, nobody is responsible, you just have to take the drugs, there are no alternatives. It also takes away your fears that your daughter will kill herself intentionally or accidentally.
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“medical/genetic/biological basis for her mental illness”
How about environmental?
To be honest I think it’s probably both. If you’re genetically and developmentally predisposed (or better said: a sensitive person) you are more likely to adversely react to bad life experiences. For some people that is severe abuse, experience of war or rape, for some it’s temporary trauma (someone’s death, divorce, heartbreak) for others even a simple life stress. Puberty (which is a period when a lot of these problems start) does not make it better.
The fact that it looks like she was doing better than ever is not really a proof of anything. I know about myself and a lot of my friends who have gone through one or more periods of being “mentally ill” that what it looks like on the surface does not really mean a lot. I think it’s actually more likely for a person who is a strong character to just take it in and try not to complain and move on to develop some sort of mental illness as they do not find another outlet. A lot of intelligent, ambitious and often successful people struggle with mental health because of the pressure that is put on them. Don’t judge the book by its cover: a smile across someone’s face often hides the pain and fear within.
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Hi again Kate:
I have to admit I’m very confused at your accusation that we are advocating against your kids. If the system is working for her that’s great, there are plenty of hospitals and plenty of places where she can get medication. More power to you and her, go get those supports.
The problem is that for the many families and people who are seeking an alternative to that system there are not very many places to turn. We never get phone calls asking us for help to find a hospital or to find medication, we constantly get calls asking us for help to find alternatives and peer-run supports.
Can you give some specifics on what you mean by advocating against your kids? Because I certainly don’t feel I’m doing that and don’t want to be doing that.
Thanks.
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I’m also extremely confused. The legislation Kate is advocating for has nothing to do with improving the system her daughter is already being treated by. Obviously, we are all for improving the system. Forcing a vaguely defined and enormous number of people to abide by drugging, whether it is helpful or not, whether it is healthy or not, whether it is abusive or not, is bad for everyone. Why improve a system when you can just force more and more people to use it?
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Not sure why this discussion is so off-track. The article is about a proposed piece of fascist legislation which allows for the forcible drugging/”treatment” of people who have committed no crime, and which even if they had would be cruel and unusual punishment. How, not whether, to defeat this legislation should be the focus of this discussion. Speculation about the nature of so-called “mental illness” can take place on any number of other forums here; I don’t want to contribute to diverting the issue by responding to essentially tangential & irrelevant posts.
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Old head,
You are correct. And we do need to look at the bigger picture. Suffice it to say, the more I look at what’s going on in this now corporate controlled “fascist” country, the more I see similarities to what was going on in Germany pre-WWII. As mentioned in another MIA blog today, we’re dealing with a “blitzkrieg,” that’s been going on for decades. We’re dealing with industries defaming, drugging, and torturing defenseless American children. What’s going on is sick, and wrong.
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I don’t think it’s off track at all. Looking at how to defeat this bill means having an open dialogue with people who support it and understanding why they do. Many of the strongest supporters are not some monolithic evil big pharma supporters. They are people who are unable to find the full support they are looking for with their family members. While you and I may disagree with them and not support outpatient treatment it’s key to examine what we can offer as an alternative. Right now outpatient drugging is being strongly forwarded in part because we have not created viable alternative structures for those in crisis. This is what we need to look at and what we need to offer if we are to convince a lot of people not to go down this road.
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All true BUT as the emergency MIA editorial and the author of this piece emphasize, this legislation is being voted on TODAY. This is not the time for debate on the “mental health” system but for IMMEDIATE ACTION to defeat this bill. Those who don’t get it can wait a day or two while those who understand its horrific orwellian implications spend their time calling senators and spreading the word so that others can do likewise.
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That’s fine, Oldhead. Provocative wording deserves to be countered with some details which are intended to bring the discussion back down to the flesh and blood reality of the diversity of the patient population. To move forward: I would like to see more focus on the recommendation by Jim Gottstein that we urge our senators to dialogue with members of the reform movement so that they CAN be apprised of the needs for reform which I hope would include the need for a holistic response to First Episode Psychosis, the need for independent review of medication utilization, independent legal services, etc. Dr. Ablow of Fox News wrote a a summary of weaknesses and needed change which could also be forwarded to congressmen. The legislators are under a lot of pressure to do SOMETHING, and we need to offer them something better.
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Fund alternatives to the current “mental health” system, not more civil rights violations, defamation with scientifically “lacking in validity” “disorders,” and “torture” with drugs known to CAUSE the symptoms of the DSM “disorders.”
And Kate, I do know some people have “mental health” issues prior to drug use, but also know many of those dealing with such issues in our society today are dealing with them, completely due to medical industry greed, lack of ethics, and can even medically prove iatrogenic etiology.
But we should all work together, especially when it comes to protecting the rights and freedom of all individuals.
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Could someone please point out to me where HR4302 or the Murphy Bill guarantees those subjected to forced drugging will be looked after, advocated for, and taken care of by “loving family members?” As someone with a severe mental health diagnosis whom these force drugging laws obviously apply to I feel I should be told immediately where I can pick my “loving family members” up. So that I can feel comfortable that when I am drugged completely disabled I will have someone to feed, diaper, and house me, and make sure I don’t strangle on my own shirt collar. Or perhaps the legislation should be rewritten so that those advocating for it aren’t advocating against me, my family (whom I support,) my livelihood, and my freedom. Thanks!
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It’s sick, the psychiatric practitioners defame people and lie to their families- in my case, so they may cover up a “bad fix” on a broken bone and the sexual abuse of my child for a pastor or his best friend – with scientifically invalid “disorders.” And to cover up these sins and mistakes, they demand you take drugs that destroy your brain.
But my dad was arguably considered the number one MIS specialist in the country within the US banking industry, back when there was ethics within the US banking system. His nickname was “the bastard from the north,” because he was an ethical bastard.
Is it possible our country has been intentionally taken over by unethical people, who intentionally are using the same tactics as the Nazi’s did? I declined job offers to work for both the ELCA Lutheran church and a Jewish employer, to manage money for them, as my dad had done for the ELCA. And my dad had made the ELCA’s pension funds millions, prior to their defamation and betrayal of my family.
The ELCA religion, that screwed my family out of millions fraudulently claiming to be Christian, prior to trying to kill me via anticholinergic intoxication to cover up pastoral sins, was historically a German religion. I fear for what’s currently going on in our society, and humanity in it’s entirety.
We need a return of respect for others, and common decency in humanity, even among those hypocritically claiming to be Christians. What kind of morons believe it’s acceptable to defame people with scientifically “lacking in validity” “disorders,” because profits are more important than proper treatment of humanity as a whole?
Pardon me for being disgusted by all who believe they have a right to unscientifically defame and harm anyone, for their own power or greed. Those who do such are no better than the Nazi doctors. And they were proven to be pure evil in the Neuremberg trials already.
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Well, my personal (by personal I mean mine and of people who are my friends and/or colleagues) on the mental illness:
– abusive mother who regularly beat her daughter -> depression, self-harm, suicide attempt
– sexually abusive father -> depression, self-harm, suicide attempt, panic attacks
– toxic relationship -> depression and anxiety, BPD, self harm
– divorce in the family -> depression
– high pressure in the workplace performance -> panic attacks
– stressful examination at school -> panic attacks
That’s just a personal sample. Fortunately of these people not one is still on drugs, some people take the occasionally to calm down in some extreme states. All of them are highly intelligent, hard-working, well-educated people. I only know one person (adult ADHD) where I can’t trace the problem back to the specific event or situation in their life. But I know, forced drugging must be an answer.
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Kate, what worries me is that there is something terribly wrong if, as you say, not one of the many adult children of these moms that you network with is healthy. Not one? They have no peers and can’t even get on the Internet? I can understand this if they have recently been diagnosed, but if this is the situation after years of help or failed help, then something is really wrong. This is astonishing to me because what this suggests to me is that perhaps these moms rely (or want to rely) too much on the state’s social services to take on the very demanding job that perhaps these moms (and pops) don’t want to do, which is to communicate with and respect the person. This sounds obvious but is actually quite a job in itself. My son got the worst mental health label one can get, also at the age of 19. We have never used “peer” resources. that come as part of the social service network They don’t exist where we live, or if they do, we haven’t heard of them. If my son relied solely on the state to help him, and I was complacent with this arrangement, I doubt he’d be doing as well as he is doing today. He has friends, he uses the Internet. This shouldn’t be such a big deal even for someone with such a crummy label.
The title of Oryx’s piece is We ARE the People. This is about empowering people, not institutions. We tend to forget this in our rush to get state services, many of which are very needed and appreciated, but ultimately, IMO, recovery comes down to helping the individual empower him/herself. If adult children do not have friends or cannot even use the Internet after several years go by, then they are not empowered/they are not getting the help they need to move on with their lives.
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Dear Oryx, Kate, Russerford, Jonathan and all contributing to this blog-discussion,
Reading each of your shared experiences stirs up my mind, heard, and every cell. Rarely if ever, do peope listen and answer whom their intense experiences brought to diverse and, for some, even opposing views, values and beliefs.
I am writing as a survivor of long term existencial mental and emotional and physiological changes between fragmented ways of life. My severe anxiety, loss of any feel and idea who I may be, wild and creative intellectual work, terrible but silenced fears of peers, struggles to survive in thinking the world, explosions of an inherently shattered reality, were my struggles to be even a teenager, my struggles being terrified of the dark unknown of adulthood.
I have never been severly abused, neither sexually nor physically in my childhood. I had parents which were role models in the community. I had parents who put all their efforts into selecting options of a good life and opposing to as well as forbidding any potentially risky ones. I learned early on to be shunned by other teenagers who mocked my beastly intellectual survival fights and who were shocked by my outbursts of violent and gostly changes of identity (the chinese geishy at a college dance, the egyptian flower girl at a uni workshop, the girl with the black hand painted in her face climbing on the balcony…)
What I learned in order to understand my terrifying struggle and breaks was something that is rarely if ever acknowledged nowhere: that my parents had both endured terrible injustice, political terror, isolation from their families, for one, and a most ideological religious faith and morale straightjacket for the other. Both of my parents were born before WWII in Germany, both witnessed the fears and partly horrors of the bombing of cities, both grew up with the morale and strength to have to make it in life, create a place of safety that no one can disrupt. Their severe protection and control have been totally confusing to me, nevertheless, they always wanted the very best and were, as I said, socially, economically and culturally successful and much liked work colleague or friends. No one had ever hold out a hand to any of my parents when life knocked them down, there was no knowledge around as how to understand their extreme needs of control and success and their fears of bad which other people or teenagers would possibly bring unto their kids, my sis and myself.
I think that until today, the terrors many of our parents have survived, social or educational injustice, terrors of economic depression or political persecution, and the very strengths and struggles they mustered when growing up and making a life have not been acknowledged. In my case, my parents wanted me to become a person like they deeply felt would lead a save life therefore all my unruly and emotional sides were shunned etc. In my story, sadly, one parent was so disappointed that I got rejected as a no-longer child. This parent was a hard working, kind person who was possibly horrified by my first teenager emotions and later my my roaring intellect, as the mad impersonations of other cultures heroines etc. did not happen to me when I was anywhere home.
So, what I want to contribute is that as long as the strengths, fears, terrors, eventually over controlling and may be intrusive interventions done by parents (who want to ‘save’ their ‘disturning teenagers and adolescents’) are not listened too, as long as no one listenes to the terrible wounds they hide in their heards and souls, we may well stay at risk of remaining pray to the mindless and controlling of a psychiatric system that offers quick fixes by neuroleptic medication and is harmful when executing overprescription of pharmaceutical drug cocktails, as for the latter, there is evidence base on the harmful effect of long term neuroleptic drug-consumption. Drugs are turning people into emotional robots, or even worse, into zombies, and there is growing scientific evidence on these effects plus the harmful impact on metabolism etc. However, what I find so very destructive, is that the silencing and zombeing repeats what my parents needed to do their whole lifes: silence and swallow their pains, fears, terrors, losses, deceptions the very hard blows they endured as children, teens, and even adults. No one ever held out a hand to my parents neither our whole family.
Therefore I want parents and siblings to be heard and supported, therefore I support the Open Dialogue approach where families are invited to speak about distress, fears, misunderstandings, misfit of best intentions, even unintended psychological mutual terrorising and pains and mad overcompensations as forces and powers of us all being humans and being humans in often economically or politically cruel times.
As I see it, much of me becoming a crazy but ghostly intellectual, later a mad person torn between grandiose save me in a better world journeys, having me and my burning worlds flame up like volcano and tear me to pieces and push me down like faceless lava, being torn into the hottest and most shattering experiences in body, feelings, seductions, agressions, despair, rage, visions and crucifications, could have been ‘prevented’ – if ever the hidden fears, pains and terrors of my parents had been acknowledged, if they had need not to be so terribly controlling and rejecting huge parts of possible lifes from their kids, thereby unvolontarily distorting everybordies souls, hearts, relations, hopes.
The true stories have never been told, so much of the feelings and dreams in my parents hearts have never known safety and togetherness. In my view, we will not be supportive in our journeys towards humane recovery – with careful and supported drug withdrawal for most – if we do not embrace in our families, communities and the psychosocial supports by peers or caring professionals – wise and totally humane people unafraid of all sorts of trauma and consequences – as long as we do not create safe collective places where stories can be told with all the pain, struggles and the dreams they contain.
In my view, we need social common spaces to tell stories, to mourn the deaths and the losses in our family histories, to honor the hardships and hard work of most parents – ere one to us unruly teenagers also! – and to practice acceptance, learning and forgiveness. This is what the people in South Africa choose after Apartheit, no revenge, no correction, no drugging up, but collective places for telling and sharing painful stories with all teir longing and potential for love and strength.
Cause if we don’t these kinda stories will come up in mad bits and pieces from one generation to the next. Or have people never become kind and strong adults as I have not been able too, cause I lived in the uproar of silenced dreams and horrors, restaging them in was got diagnosed as madness. Losing my father who rejected my out of ignorance and horror about the wildly thinking and madly acting non-daughter I had become. He never shared his traumatic childhood stories… as many of our fathers and mothers don’t. So we need to come together and share the terrifying, painful, deeply sad, deeply longing for feelings and love and dreams stories.
That would be a very very different kind of recovery collectives, and we could invite the wise and senior people to help us build communities for story telling and creating transgenerational justice.
So that mum’s like Kate are not left alone at the hands of a silencing and helpless psyciatric systems with mostly drugging up on offer. Mums’ and dads’ and siblings’ no longer left alone in protecting, and eventually overprotecting, their daughters and sons with mad experiences. Our madness in the community announces stories need to be told, and mums and dads need the support of groups of people with deeply humane knowledge and rituals for story stelling, forgiveness and finding amazing strenghts from reconciliation and discovery of their own families and their social groups real histories.
With kind regards and loving wishes from a survivor, me a dauther who lost her (departed) father through his rejection cause there was no humane help for understanding, storytelling and reconciliation.
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Thank you for sharing your powerful story Ute.
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Hallo Ute,
wonderful comment, so true. If you like to get in contact, you can write me an email:
http://pipnee.com/P5F50FA63
I’m also very interested in the Open Dialogue approach, other forms of Dialogue and Restorative Circles and would be happy to get connected to people in Germany and Europe that share this interest.
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Ute_M_Kraemer,
Thank you for your very good suggestion for social common spaces to share our life’s stories.. That is something to strive for and my understanding of the need for that is growing.
Last night was the vote on the Murphy Bill. I sent out the word to a large group of contacts.
But, the social forces for the bill had already gained the upper hand . Now we are left with an opportunity for “damage control”. I contacted my local US Senators with the suggested message from Jim Gottstein that they dialogue with members of the psychiatric reform movement. I called again this morning and I felt that the message was received warmly by the receptionist for Senator Gillibrand of NY. She was getting other similar calls. I suggested names such as Dr. Sandra Steingard, Dr. Joanna Moncrief, and the Foundation for Excellence in Mental Health Care as contacts to begin the process. I shared our personal story. The receptionist encouraged me to write again with the points I had just shared with as much contact information as possible so that the information provided could be routed efficiently. I said that I believed that psychiatric survivors would greatly appreciate it for the Senator to get to know the names and faces of people who have been hurt by psychiatry. I had the strong impression that I WAS BEING HEARD.
I think all of us have a golden opportunity right now to present our testimonies of our interface with the psychiatric system. Let’s stay positive and do as much good as we can.
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No, it was not. The Murphy Bill has not been voted on by either house. It was the vote on the Medicare bill, which doesn’t make or break anything.
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A kind teacher and friend just enouraged me with this quote by Frederick Douglas:
“Powerful organizations never espouse great reforms. Social reform begins in the heart of a solitary individual and grows strong among humble men and women, who, unknown to the community, without means, without power, without station, but perceiving the thing to be done and having faith in the triumph of what is true and just, engages in the work.”
Here is another quote , of the teacher, Robert Babcock., I believe.
“There is a wrong to make right, a chain to be broken and a burden to be removed.This, I truly believe, is the true mission of education. ” (Robert Babcock)
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Well, I guess my question today is, where do we go from here since this was passed in both houses of Congress? What hope is there that Obama will veto anything since he’s a believer in the system and the story it tells in favor of psychiatry and the drug companies?
We are the scapegoats of the gun control lobby who have successfully targeted us as the problem rather than the proliferation of guns and violence in this country.
What do we do now?
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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.
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That’s so true. But also the sheer fact that others treat you well even if you’re going through a crisis is very important. I myself have received a lot of support from complete strangers and I know that it probably didn’t look like I have appreciated it at the time but if I knew who they are I’d love to go and thank them for the time their took. A lady who saw me crying in the street and came by to tell me that she understands and she’s been through a lot of the same, the policewomen who spend almost an hour with me bearing with my fear and anger and despair while she could have easily just call the ambulance and force me to the hospital. People like that make a difference.
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The amendment to the Medicare bill has passed both houses. The Murphy bill has not.
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http://wesa.fm/post/rep-murphy-introduces-bill-overhaul-federal-mental-health-system
The Murphy bill is complicated. Another approach is to get congress people to amend the heck out of it.
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http://beta.congress.gov/bill/113th-congress/house-bill/3717
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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.)
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Forced outpatient treatment 3rd from top, sorry to confuse people
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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.
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I agree with you that peers should not be telling people to go off the drugs. This is not part of what a peer worker is supposed to uphold. We are to stand for freedom of choice in treatment, even if people choose to take the drugs. We can inform people about these things if they ask, but we’re not to be pushing anything. This just becomes one more form of coercion, which we’re supposed to stand against.
A peer worker is only as good as the training that she or he gets. There are many “schools” of peer training and some training programs are better than others. Some programs just parrot what the “system” says and the workers coming out of those programs are just miniature behavioral health workers. What many do not realize is that, ideally, peer workers are to be in the system but not of the system. This gives them the freedom to be able to speak some of the things that they should be saying when it comes to the “treatment” of people who have been labeled as being “mentally ill.”
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A close friend of mine used to call me every time her son was in crisis like in homeless ,suicidal, threatening. One time the police found him ,he was drinking and on paxil and trying to jump off a bridge. He was in his mid 30’s. They put him in hospital for 72 hours .Gave him a script for more paxil and released him.
His mother was trying to move heaven and earth to get him in a live in half way house type facility in a city 250 miles away . Her son wanted to go , the facility possibly had a place for him.All that was needed was some papers verifying his claim that he had previously received care from a clinic in another state some time ago. Except that only a mental health facility could request and receive these records which needed to be forwarded in advance before the halfway house would actually accept him.
I went with the mother to the local community mental health to see if the records were forwarded .A social worker said her request had been misplaced. She was distraught but we decided to wait to try to speak to a supervisor.
After a 2 hour wait the assistant director of the community mental health center appeared .We followed him into a room ,he asked us to sit on some folding chairs at a long table .He was about 6’7 ” tall and sat on the table across from us and asked us what we wanted. The mother explained the situation including how her son was suicidal, and pleaded would he make a phone call to expedite the medical records arriving to the half way facility where her son wanted to go.( I swear to you this is true ,I’ll never forget it.) He looked down at her and said , “I will not make any phone calls but if your son commits suicide we are prepared to offer you counseling services.” As tears flowed from the mother ‘s eyes and I was in a state of disbelief ,I had a strong urge to smash his head into the table but realized I would be arrested and the mother still needed my help. Any ways somehow her son got to the live in facility. I had turned him on to the virtue of drinking fresh made green vegetable juices ,explained how the drug Paxil was known to make people suicidal, and that as most of his teeth were rotten don’t let them use mercury fillings in your mouth, better to pull the teeth and get non metal dentures when you can. Somehow he’s still alive today ,not bad for someone not even getting Social Security Disability only food stamps and meds but not Paxil.
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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.
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Thank you for posting this. I can use much of it in my trauma informed care presentation if this is okay with you; not the personal things of your story but the information that you’ve pointed out about how kids can be traumatized and the parents never realize it. This is a very valuable point to make over and over again.
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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.
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The movement of recovery is made up of people who have been through similar circumstances as Kate’s daughter and I am sure they have family members who have went through what Kate speaks on. Why can’t we all do this together? We in the movement know what it’s like firsthand to be a family member in distress, let’s talk about this more, bring it home with that connection.
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