First They Ignore You: Impressions From Today’s Hearing on H.R. 3717

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First they ignore you,
Then they laugh at you,
Then they fight you,
Then you win.”

      —  Mahatma Gandhi

As I walked alone up the stairs to the Rayburn House Office Building this morning to attend the hearing of the Energy and Commerce Subcommittee on Health on H.R. 3717 – the Helping Families in Mental Health Crisis Act – I thought about how I wasn’t truly alone. In spirit with me were all the people who had experienced scary, coercive, and dehumanizing interventions in the name of help. In spirit with me were all the well-intentioned family members who didn’t want to force treatment on their loved ones, but didn’t have access to or know about alternative voluntary, recovery-oriented community resources. In spirit with me was every mental health provider who went into the field hoping to really make a difference in their communities, but became cynical and discouraged in the face of so many broken systems and broken spirits.

These are dark times we find ourselves in. People with mental health histories are being scapegoated as the cause of the complex problem of violence in our nation. This bill signifies one of the most frightening attacks on the civil rights and human dignity of people with mental health challenges that we have seen in three decades, of that there is no doubt. I won’t give a detailed report of the hearing itself; I won’t go into detail about how Representative Murphy viciously bullied and attacked the people whose views were different from his; you can experience it for yourself here. What I would like to do is to share some impressions, and some reasons for us to be hopeful in this challenging time.

As one can tell by reading the witness testimony and watching the proceedings, the hearing today closely mirrored the impassioned national debate that is currently raging about one of the most contentious issues in health care: the use of coercive interventions in mental health treatment.

For decades, the recipients of forced treatment have been largely ignored in the various public debates about us. We have cried (often into the wilderness) that force is wrong, that it hurts people, and that it is a violation of civil and human rights. But rarely has concern about the use of force occupied the national stage in the way that it does today. (Perhaps we have Murphy to thank for that.)

To me, this is a hopeful development. It shows that we are slowly chipping away at the what I call the “anosognosic fallacy:” the very scientific-sounding, yet unsupported idea that some people “lack insight into their illness;” that a small handful of these people may possibly in the future be a threat to public safety; and thus, they must receive court-ordered treatment “for their own good.” The fact that several Congresspersons could articulate that the bill’s provisions around force were troubling represents a major victory of our civil/human rights and advocacy movements.

Representative Murphy and others at the hearing talked about the tragic situation we find today, where people with mental health challenges are warehoused in jails or wandering the streets alone. But the people who ended up in these horrible conditions did not simply arrive there overnight. Somewhere along the line, they were let down. De-institutionalization policies are typically blamed for this, but as we know they are not the only cause. People in every community in our country are let down every day by exposure to poverty, racism, sexism, homophobia, trans-phobia, homelessness, and violence; by patterns of abuse in their families due to unhealed intergenerational trauma; by accessing terrible treatment they were not likely to want to re-experience; by not being able to access any support at all; or by being discriminated against and treated as “less-than” because they had a trauma history or a psychiatric diagnosis. It is tempting, and convenient, to slap a forced-treatment band-aid onto the festering wound of these intersecting oppressions. But beneath, the wound will still continue to seethe.

My heart went out to the witness from the National Alliance on Mental Illness (NAMI) who described her mother’s tortured descent into madness. The witness arrived at the conclusion that forced treatment could have saved her mother. I have seen this horror with my very own mother, who was compelled to seek treatment for her voices and visions, but found it destroyed her body and soul. I came up to this woman after the meeting and introduced myself, daughter to daughter. I told her my story and said,  “you know, we are not so different, though we are on opposite sides of the fence on this bill. We both saw our parents destroyed. You feel your mother was destroyed by lack of access to services, and I know that coercive systems of care played a significant role in my mother’s death. Can we agree that force isn’t the answer?” To my surprise, she agreed that what we should really be focusing on are expanding options for support for all people. And here is an example of how we can find common ground for collaboration amidst the extremists who call for forced treatment in mental health as the answer to our pressing social problems.

Let’s face it: we probably aren’t going to change the minds of the Tim Murphys of this world. He is determined to discredit the expertise of anyone who does not possess an M.D.

Murphy’s demonization of the Alternatives Conference, a vibrant federally-funded gathering of people who once met the criteria for serious mental illness but have found recovery and vital meaning in helping others to recover, signifies that we are, as Dr. Daniel B. Fisher pointed out here, at the “fighting” stage of the four-step process of social change articulated by Gandhi above. Which, as we all know, is followed by the winning stage.

But we have to do a better job of reaching the hearts and minds of Americans. The fact that the Tim Murphys of the world can dismiss the movement of persons with lived experience of mental health challenges as a bunch of fringe crackpots who want to prevent people and families in crisis from getting support, is evidence of a major communication failure on our part. For too long, we who have been traumatized by abusive families and/or abusive systems have shrunk from fully engaging with families and providers. We talk amongst ourselves about what is wrong, and we are right. But we can’t win this fight alone.

Let’s each of us spend some time winning over some hearts and minds. Let’s talk to people we don’t usually talk to. Let’s engage, engage, engage with our legislators. Let’s engage with all media. Let’s share our human stories with them. What we have on our side is hope in a hopeless time, creativity in a narrow-minded age. Let’s share our hopeful stories about how we regained our lives after our descents into hell. Let’s keep sharing stories about the gifts we have to offer to this world: real, community-based alternatives to force and coercion. Ways that we can really support families in crisis. Voluntary crisis supports such as peer-run crisis respites. Innovative approaches for persons with experiences of psychosis like the Hearing Voices groups, Open Dialogue, or the in-home supports offered by the Family Care Foundation in Sweden. People with experiences of suicide supporting one another to live another day. But these amazing innovations are accessible to so few. We need to be a vital part of creating hope-based policies to create hope-based supports everywhere for struggling families and their communities.

There is no doubt: we are winning. But we can win faster if we cultivate more allies. Family members are not the enemy. Even the dreaded “mental health systems” are not the enemy. Ignorance and fear are our true enemies. These are what drive “shockingly regressive” legislation like H.R. 3717. Ignorance and fear drive force, discrimination, and destructive attitudes towards people with psychiatric histories. Persons with lived experience and our allies can do much to defeat these enemies by sharing our stories, sharing what we have to offer, and building the relationships with “the other side” that will make all the difference in this fight.

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Leah Harris
Speaking Truth to Power: Leah writes about holistic, community-based approaches to support those experiencing emotional distress and extreme states; storytelling as a vehicle for personal liberation, human rights, and social justice; and connections between creativity, activism, spirituality, and social change.

57 COMMENTS

  1. “I and the public know
    What all schoolchildren learn,
    Those to whom evil is done
    Do evil in return.”

    ― W.H. Auden, Collected Poems

    I am sure any one who tried to coerce Jim Murphy would be strongly rebuffed. He would consider their behavior an evil. And coercion is just that — an evil. I knew two women who were forced to take drugs. It did them no good. I found a psychotherapist to help a third woman from being required to take drugs.

    Jim Murphy is pretty ignorant of human behavior. If a doctor knows anything about it that is not due to his medical school training–of that we can be certain. What is Murphy’s angle? Does he pal with the drug companies? Campaign funding? Or is he a crime fighter? I think we can be sure the recent Ft Hood shooting had something to do with Ambien and other unnamed drugs. Only idiots would continue this travesty of medicine. But we have an abundance of idiots and a confederacy of dunces.

    All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident.
    Arthur Schopenhauer

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    • See, that’s a good point. I think that if everyone of these people who are so strongly for coercive treatment was to go through the standard 4-point restraint, forced drugging, seclusion scheme in a closed psych ward for like a day they would change their minds immediately. Some people are just not very skilled at empathy and need to learn from experience.
      That kind of reminds me of the case of the “enhanced interrogation techniques”. At the time the scandal broke there was a number of people who said that water-boarding isn’t torture, it’s just a little water over your head, can’t be that bad. Then a few of them actually took a challenge and got water-boarded on camera. I saw some of these movies on youtube – it took a few seconds for them to scream “stop” and turn around from “it’s just a little water” to “it’s torture, its’ inhumane and should be stopped”. Maybe instead of the hearings one should implement some practical demonstrations for the proponents of such measures?

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  2. I agree with the great majority of your article, but at the risk of being Mr. Downer I must say in response to the last paragraph: While there are pockets of hope and raised consciousness for sure, we are not winning, we’re being ganged up on and scapegoated like never before, and these new draconian laws are designed to usher in a new holocaust against the psychiatrically labeled. If by “we” we are talking about those who have been locked up and/or psychiatrically labeled and assaulted, we have never been in more dire straits.

    Another distinction I think is important is that while “fear and ignorance” are impediments to spreading consciousness, they are not “the enemy” in and of themselves, they are tools deliberately used by the real enemy — the international corporate pillagers and psychiatric-industrial complex — to keep people confused as to the political/economic nature of their misery and to create a new class of scapegoats for the insanity of this inhuman sytem that has its boot on our collective necks.

    I admire your insight and energy and like reading your articles; thanks for doing what you do.

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    • oldhead I agree, but it seems to me that it’s our ignorance and fear that gives them power. When people don’t have access to good information, then they are less likely to question authority figures and to accept a medical solution to complex human problems.

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  3. Leah, thank you, I loved your thoughtful and hopeful blog here. We are all struggling with working hard but unfortunately, in our own silos, States, towns, organizations… . How might we integrate all the voices of advocates, people with lived experience, family members and providers to speak with a unified voice tell our stories of what works and have a direct line of communication to the legislators, to the country. We are stronger together than apart. We have so many fabulous organizations around the country. How might we all work together to demonstrate a united message? Create a true “national alliance” of people who are living the dream,? I keep envisioning one virtual network. Some have suggested we all join an existing advocacy group. If that’s the answer, which one ?
    Thank you, this was hopeful after a week of feeling beaten.
    yana

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    • Yana, these are such great questions and I don’t admit to having all the answers.

      I think we have been good at making virtual ties with one another, but perhaps more of an on the ground presence is needed.

      I agree with Michael Cornwall in his recent post that we need some kind of national advocacy and activist and support networks in our communities.

      I think a chapter model with a “values driven” approach could include not just persons with lived experience but their (supportive) family members, friends, providers who are fed up with business as usual–everyone who wants to see people treated with dignity, to see their human and civil rights preserved, and to have access to the supports they need to live the lives they want. MHA chapters are one way to get involved. I think NAMIs can vary, some are more progressive than others. So one would have to be strategic.

      I think what can unite us, more than rhetoric and intellectual arguments, are our common human stories of struggle and survival. We all struggle, and we would do better to reach out to one another instead of fighting or demonizing each other.

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

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    • Agreed that often the oppressor seeds his own downfall by pushing his hand too far. But there also comes a point where the repression is so overwhelming that it serves not to fire up resistance but to make it seem so futile that people give up without a fight. I also agree that “the arc of the universe bends towards justice,” but would like to see some progress in the here & now, not the abstract future. I do hope that aware people will react to the murphy bs with a “this time theyve gone too far” response, and some action to back it up.

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  5. Murphy bill’s definition of someone eligible for court ordered forced treatment –
    •HR 3717 IH (2) ELIGIBLEPATIENT.—The term ‘‘eligible patient’’ means an adult, mentally ill person who, as determined by the court (A) has a history of violence, incarceration, or medically unnecessary hospitalizations; (B) without supervision and treatment, may be a danger to self or others in the community; (C) is substantially unlikely to voluntarily participate in treatment; (D) may be unable, for reasons other than indigence, to provide for any of his or her basic needs, such as food, clothing, shelter, health, or safety; (E) has a history of mental illness or condition that is likely to substantially deteriorate if the patient is not provided with timely treatment; or (F) due to mental illness, lacks capacity to fully understand or lacks judgment to make informed decisions regarding his or her need for treatment, care, or supervision.

    Did this come up at the hearing? This could apply to absolutely anyone. (I admit it, Murphy, I didn’t have time to listen to the whole video.)

    Murphy certainly does not present as someone who’s interested in dialogue, cooperation, or working together. Or not contributing to stigma with scare tactics, that’s for sure. He also doesn’t present as anything close to a paragon for mental wellness… did he actually say, at 1:43, “the nature of the mental health community is that they throw around misinformation,” and “sometimes in the mental health system we’re so used to dealing with dysfunction in ourselves we don’t understand when we have an opportunity?” Not exactly out to create working relationships, is he?

    His AOT grant funding has already passed with the Medicare Act. It’s a done deal. If you build it, they will commit.

    Also, was there any testimony at the hearing to the fact that our country is awash with prescribed drugs, to the point that these drugs are detectable in our rivers and the animals that live in our rivers, but our problems with “mental illness” just keep getting huger and huger?

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  6. Hi Leah,

    Thanks for reporting on the hearing. I would have gone but unfortunately, had another commitment.

    When you get a chance, can you email me at [email protected] as I would love to know what I could contribute to hopefully slow down this stampede against people with an MI label?

    Thanks!

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  7. Beautifully written, Leah. I wish I shared your optimism.

    I do share one optimistic conclusion, though. I think our movement CAN make common cause with the so-called “NAMI mommies.” I think most of them really want to help their family members, but have been lied to by the drug company bribed leadership of national NAMI.

    Here in Boston, where I am right now to help out, the parents are like the backbone of the fight to free Justina Pelletier. They understand the danger to their children posed by the raw abuse of power shown by the local psychiatric establishment. They have been very welcoming to me, and work closely with other groups.

    We CAN make common cause with them.

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    • My mother was a “NAMI mommy” of sorts, she was encouraged by her friend who had a son that was also “mentally ill” like I was accused of after I got screwed up by starting pills for insomnia “a symptom of depression” that lead to more and more pills and a downward spiral.

      Back then my mother had read “bipolar for dummies” and learned “its not anxiety , it’s agitation…” and was really upset when I refused lithium for what was Zyprexa withdrawal after she paid $700 for this new doctor evaluation. That guy was an arrogant ass and lithuim ? I am not a damb battery and screw blood level testing ! Besides I knew I was suffering withdrawal and that “doctor” was clueless or just didn’t care and was going to take the money and try and keep me dumbed down and sick on drugs to make more. That’s when I really was starting to figure it out.

      Years later, now that I am better and recovered from labels and pills my “NAMI mommy” agrees 100% that psychiatry was the very thing that was made me sick and was keeping me sick, a complete turn around.

      There are online forums where the NAMI moms write about there kids treatments, its like they can’t see the pattern in there own posts, it very often goes like this: First contact with mental health system> SSRIs or stimulants > manic episode > hospital> diagnosis bipolar > neuroleptics and mood stabilizers > side effects, withdrawal reactions> hospital> neuroleptics and mood stabilizers > side effects > kid stops taking them> withdrawal reactions labelled symptoms > hospital > more drugs… on and on it goes.

      Anyway my mother would never drink the NAMI cool-aid again

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      • Great post! Thanks for sharing your experience, and it’s great to hear that your mom finally “saw the light”. You seem very courageous. I think you raise a great point that I’m also constantly seeing: the pattern you mention that is observed on the NAMI posts. It prompts me to go back in and try to be an influence to help them see this. I think it would be VERY revealing simply to take a random group of kids and adults diagnosed with “bipolar disorder” and carefully trace their history in terms of symptoms, initiation of meds, med changes, symptom changes, etc.

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      • Maybe then one should organise somehow and invite them to hear from our side of the story? Identify the families’ groups and organise conferences and meetings specifically for them, where they are invited, to address these issues and tell them about the science on drugs and what the alternatives are. If we don’t win the families it’s an uphill battle – their stories are as compelling as ours and being on the other side of a barricade is just dumb. Most of them want the best for their family members but they just don’t know better and they only get information from the psychiatrists and drug companies. If you could show them that we’re not only ANTI-psychiatry but actually FOR alternatives the it could be a game changer.

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        • I LOVE this idea! We haven’t done a good job of reaching out, for the reasons I outline in this piece. I am not an expert on the history of social change, but I would be willing to bet those victories were done through the process of building strategic alliances.

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    • So, strategically speaking, wouldn’t you agree that the goal should be to wean the rank-and-file away from the leadership? Many family members have been misled and used by these people, and if they can be convinced to break rank it would throw a big wrench in the works of those who are capitalizing on relatives’ — and everyone’s — “fear and ignorance.”

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  8. Thank you Leah, Great testimony.
    Thanks to MIA for the link to the hearing!
    Further, the way of the link enabled viewing and reference to others testimony as this from MA; http://docs.house.gov/meetings/IF/IF14/20140403/102059/HHRG-113-IF14-Wstate-ZdanowiczM-20140403.pdf
    I understand the impact of written testimony, whereas some of us that are facing these hearings in our own states- having this information allows for additional support and data in an effort to advocate on behalf to our representatives and decision makers.
    On this federal bill, I commend this MA testimony in bringing back the mission of truth and the mention reminding congress of the fervent work that Sen. Edward Kennedy did early on.

    Thanks to all-

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  9. Thanks so very much for being there and using what you learned to reach out to others….

    Many of us who work in treatment, are faced with an un expressed belief by the profession of psychiatry, that people with mental illness never get better.

    Consequently, they need to be drugged and controlled forever, because their instability, represents an ongoing threat to the community, and they cannot be trusted to run their own lives.

    Its this underlying and cynical belief system that drives much of psychiatry’s approach toward the people in their care. And leads to a myopic vision, and response to those in emotional distress.

    This view plays a part in psychiatry’s knee jerk response, of doling out medications, and avoiding relating to people on a human basis, and not responding to their patients in a healthy way, this compounds the suffering of those that look to them for help.

    In many instances, psychiatrists are not trained, nor are they equipped emotionally to understand what helping someone in distress is all about, its so much easier to just be controlling, and pass out pills, and not have to provide emotionally for those under your care.

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    • Your entire post is right on target but the last paragraph sums everything up really well. Psychiatrists are not trained, nor have they done their own “work” so that they could understand someone in distress. It’s so much easier, less “messy” and time consuming, to just pop pills in people. It’s also much more lucrative since insurance and Medicare won’t pay for talk therapy and true caring.

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  10. Thank you, Leah, for this obviously heartfelt, passionate and articulate article. I strongly agree that we need to reach out and not just commiserate with each other or “preach to the choir”. I am aware of my own tendency to demonize those “on the other side” of these issues, and continue to strive to find the right balance. Yes, there are some who seem to come pretty close to “demon” status, but I believe most are misinformed, misled, and trying to cope with things the best they can (speaking of individuals and families in emotional/mental crisis) Your anecdote about your conversation with the woman from NAMI was especially encouraging to me. Despite deep concerns about their “unholy alliance” with mainstream psychiatry and Big Pharma, I have re-engaged with the NAMI chapter in my area. The reason for this is at least threefold: (1) I was greatly encouraged and saw it as at least a “glimmer of hope” that Keris Myrick was elected as the national board president, and even more encouraged when Robert Whitaker was invited by her to present at last year’s national convention; (2) This is the organization that virtually ALL people/families in emotional/mental crisis get sent to in my area; (3) I want to be a “different voice” to the struggling and desperate family members who come there. On this last issue, I think I have had a modest, positive impact. I sense that families are very open to information when it comes from someone else who has experienced similar things. Unfortunately, following some initial limited dialogue, the President of our local NAMI chapter has stonewalled me. The Executive Director and I have at least “agreed to disagree” on certain points. There may come a point when I feel that the negatives outweigh the positives in terms of my continued involvement, but for now I remain hopeful.

    Anyway, Leah, thanks again for this excellent article. Your points are well taken.

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    • Wow Russerford, you are doing the hard work of relationship-building, and judging by the reaction, it seems to be working.

      The only thing that makes me sad is that even if we do persuade people to adopt another point of view, there are so few actual alternatives within reach for people.

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  11. Thank you Leah, for this excellent article. Sadly, for me as well as others I know, Family is indeed the enemy. To suppose that every family wants the best for their family members is unfortunately very naive. For many dysfunctional families, Psychiatry has served well to silence and imprison those who dared to long for a better life.

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    • Yes, a sobering point, Nancy. I believe one of the greatest tragedies in our “mental health” system is that the dogma that “mental illness is a brain disease” has allowed family dysfunction to be completely ignored and even entrenched, at the expense of the member who is designated as the “ill” one. I believe there are very few instances, if any, where family dynamics do not play at least some part in the mental/emotional crises experienced by any one family member.

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      • I will repeat at the risk of being boring that as long as we accept the term “mental illness” — even in quotes — we are playing into the narrative of the enemy, just as those who repeat the term “pro-life” play into the hands of those with no concern at all for life. And yes, we do have real enemies, pretending there are “no sides” mystifies the situation. We do need to be better at identifying the real enemy though; it is certainly not some overwrought relative talked by psychiatrists into putting their child/parent/spouse through the gulag.

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          • Explain, please. Pro-choice people do not agitate for laws to dictate to women how to treat their bodies. (Except for some “pro-choice” shrinks, I guess.) Actually, let’s not divert the discussion over this but I’m just sayin’…

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          • Oldhead, i also do not wish to divert the discussion. Your first pejorative reference to “pro-life” did just that for me, and your follow-up comment really “begs the question”; that is, one is asked to agree with your implicit premise that a person in the fetal stage is nothing more than a part of a woman’s body–an assumption that flies in the face of current medical knowledge. In my view, the term “pro-choice” is at least as misleading and hypocritical as you seem to think “pro-life” is, for reasons I’d be glad to spell out if you wish to continue the discussion privately. I really didn’t want to incur the wrath of probably the majority of those on this site, but I’d rather out myself as “one of them” than let this cheap shot stand uncontested. I would prefer we not get side-tracked onto issues that will provoke unnecessary infighting when we need to direct our efforts toward standing against the ever-expanding Gulag Psychepelago that seems so poignantly illustrated in this Justina Pelletier fiasco. I certainly appreciate your many insightful comments on this blog and your efforts toward our common and very worthy goals!

            I would be glad to discuss the “pro-life”/”pro-choice” issue further with you, but would suggest we do that via e-mail. You can contact me at: [email protected] if you’d like.

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          • Guess there’s not a tab for replies to replies to… but I have no interest in arguing abortion. Period. But I will not be apologetic about or retract my using “pro-life” as an example of the manipulative use of language. Sorry about that. (My last response.)

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      • True. I only know of two people in my social circle who tried to commit suicide and in one case it was sexual abuse in the family, in the other the physical abuse. Of course, it ended up with the victims being hospitalised and given drugs while the perpetrators are roaming free to this day and faced no consequences whatsoever.

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    • Nancy, I don’t assume that every family wants the best for their kids. I had the experience of being the “identified patient” and/or scapegoat for a lot of things in my family and it was awful.

      That being said, we can’t demonize all families either for being evil, just because they didn’t know what else to do.

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  12. Leah, I would appreciate the opportunity to print a copy of your thoughtful and respectful posting in our NAMI Queens/Nassau newsletter, PATHways. Our members need to hear both sides of the debate. And you’re absolutely right; we need to find common ground.

    Thanks,
    Janet

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  13. Leah,

    Thank you so much for attending this important meeting and informing us about what went on there. It was very helpful to have the video of the meeting as well.

    I found Tim Murphy’s tactics abusive and ignorant citing the worst bogus ideology of Fuller Torrey; I agree that he came off as a big bully who should have been kept in the principal’s office rather than school and adult life he is still treating as his personal “playground” whereby he can intimidate, attack, bully, insult, degrade, abuse and overwhelm anyone who dares to challenge or disagree with his bogusg claims. He pretty much yelled at people that they had no right to any differing opinion if they had not read every word of his supposed bible bill or “magnum opus,” and we know the dangers of evil, bogus witch hunt books like the DSM he obviously worships religiously though declared invalid. I still cannot understand how anyone, least of all our therapeutic state, can inflict these life destroying bogus stigmas on people even when their chief, Dr. Thomas Insel, Head of NIMH, has admitted they are totally invalid and lack any scientific, medical or any other evidence! Perhaps some lawyers could take up this issue some day?

    I agree with you that some of the people there did inspire some hope by expressing negative views about forced treatment, but there is a great deal to be concerned about because sadly, blind, narcissistic bullies with no insight, empathy or humanity prevail all too frequently by intimidating others into submission.

    We are very fortunate to have dedicated people like you appearing at such meetings and providing such a detailed report to alert us about the latest threats and dangers from biopsychiatry’s/Big Pharma’s never ending predation on humanity regardless of their evil, destructive effects.

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  14. Donna, you are right. I am definitely not suggesting wearing rose colored glasses. I said that we are in the fighting stage, and that stage is really hard. I have been thinking of Dr. Martin Luther King, Jr and the struggle for civil rights, and how they won because they never gave up fighting, even when their lives were on the line. Yes he is a bully, but we have faced worse!

    Thank you for your kind words. I am fortunate to be able to be there.

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  15. A few years ago, there was a Congressional Hearing regarding an institution that I spent time in. The complaint features over a hundred separate accusations of abuse and included a suicide that happened at the facility even though their should have been five members of staff on that open ward at the time. A girl who was there in the latter part of my visit was allowed to give testimony, and I thought, this is it. After all these years, someone is going to say outloud what I have kept silent for twenty years. See, i thought that, even if they found against our accusations, that we would have been heard, and there was no way to rob us of that. When she finished speaking, a Congressman for our state first made a series of insinuations about her character and how she had come to be there. I think he was hoping for a reaction, but she was honest, and completely calm. When he failed with his attempt to paint all of the accuser’s as drug addicts and morally vacant, he closed with how considering her beginnings, that she had managed to give testimony in front of Congress in this way served as a testimony that the facility was, regardless of their “mistakes” making a considerable contribution to the state… They never even bothered to discuss the accusations or documentation in front of them. You see, I could never understand how people could know what went on in these places, and allow it… That was when I realized that they were at least casually aware of how bad things were, and more importantly, they were willing to allow them to continue as long as they didn’t have to look at us. They were just humoring us by treating us like we had the same rights and capacity as everyone else in their minds…

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  16. Hi Leah,

    Thank you for your article and for your integrity and willingness to be vulnerable in reaching out peacefully to those who you disagree with.

    I know of individuals who are in or connected to NAMI who share many points of view with you. Could you email me at [email protected] and I will try to set up a dialogue between yourself and these individuals. If you are willing, I will contact them and see if you and they can discuss common areas of interest.

    Best wishes,

    Milt Greek

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  17. This is truly wonderful post. The problem is that the opposing “sides” in this debate are not and will not be treated equally by the public, the media and public officials. Anyone who has read E. Fuller Torrey’s latest book or looked on the Treatment Advocacy Center website knows that they are filled with junk science. My “favorite” is the study showing the need for more state-operated psychiatric hospital beds. The methodolgy: ask a few ANONYMOUS psychiatrists how many beds are needed for a given population. But because Torrey is an MD, he is still treated with respect by legislators and people who review his book in the New York Times.
    Unfortunately, consumers and the recovery movement are, for the foreseeable future, going to be held to a higher standard. We must have real science. In this spirit I must say that I predicted there would be a backlash when the Alternatives conference invited Robert Whitaker to speak. His book,” Anatomy of an Epidemic” is also junk science–confusing an increase in the number of people diagnosed with mental illnesses who get disability benefits with an increase in the amount of disability due to mental illnesses and then arguing that this increase is caused by psychotropic medications. But this judgment error by the organizers has been blown completely out of proportion by the “medical establishment”. So now we are in a defensive mode trying to fight off the many bad things in the Murphy bill, instead of pushing forward for more funding for recovery- oriented, non-coercive services. Our judgments must be more cautious and careful than those of psychiatrists, etc.

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  18. Mental2, thank you for sharing your viewpoint.

    I agree with your points, except when you say that Whitaker’s work is not helpful in this fight. In Anatomy of an Epidemic, Bob exposes one crucial piece of what has gotten us into this mess in the first place. Whether or not you agree with his methodology or conclusions, he has helped to raise public awareness that these medications can be fatally dangerous and are applied in unethical ways to vulnerable groups of people. He has helped to raise public awareness in a way that few others have managed to do before him.

    Bob brings his skills as a journalist and his own viewpoint; but he is just one individual.

    This must be a grassroots movement that is led by and for persons with lived experience – and by and for ALL the people who share our values and vision for a more just society.

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    • I am glad that the point you take from Whitaker’s book is that psychotropic medications can be quite harmful to some people and have often been used inappropriately, unethically and excessively. There is lots of evidence for this point . Unfortunately, that is not the main thesis of his book which is expressed in its title. The thesis of the book is that there has been a dramatic increase in disability due to mental illnesses. Hence the word “epidemic” in the title). According to the book, since this increase coincides with an increase in the use of psychotropic medications, we have an epidemic of mental illnesses caused by psychotropic medications. But there is no epidemic. In fact, as the use of medications has increased, the number of people with mental illnesses locked up in mental hospitals has dramatically decreased and the amount of coercion has also decreased. In fact there are many reasons why outpatient commitment, which Murphy wants to expand, is not being used even though it is expressly authorized by law in most of the states. But one of the important ones is that there are very few people who meet the criteria for outpatient commitment even as badly articulated by the Murphy bill. Most states have figured out that its cheaper to engage people in services than create the infrastructure needed for coercion.

      Whether or not there is an epidemic is extremely important because, if psychotropic medications are causing an epidemic (as opposed to being used excessively and often harmfully), then NO ONE should be allowed to take them–the FDA should withdraw its approval. But if that happens we will have an epidemic. We will need to build all of the hospitals that Torrey wants us to build. We should be fighting to end coercion and make sure that everyone can get the services that they want and need; not frightening people with imaginary epidemics.

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      • Mental2, you have given me much to think about. I wish Bob could personally weigh in on this discussion.

        What you are saying dovetails with my own personal evolution as a social justice activist. I started out 13 years ago as a young woman taking an extremely rigid “all meds are evil, and if you take them you have been duped by your doctor and Big Pharma” stance. I took my family’s experience of being very harmed by meds and decided that no one should be on them. Flip side of psychiatric oppression, right? Not a great position from which to build alliances and create trust between polarized and hurting communities.

        Over the past 13 years of doing this work, my evolving understanding is that social change is not likely not come from only focusing on the evils of psychiatry or even the whole pro vs. con discussion on the meds specifically. (Though sharing stories, public education and sharing info on harm reduction, etc is critically important.)

        I too, feel that coercion is the place from which we can begin to articulate our collectively developed, profound, and beautiful vision for social change and social justice. Thank you for helping me to think ever more critically when speaking and writing about these immensely complex issues.

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      • From the Mirriam-Webster online dictionary:

        ep·i·dem·ic
        noun \ˌe-pə-ˈde-mik\

        medical : an occurrence in which a disease spreads very quickly and affects a large number of people

        : a sudden quickly spreading occurrence of something harmful or unwanted
        Full Definition of EPIDEMIC
        1
        : an outbreak of disease that spreads quickly and affects many individuals at the same time : an outbreak of epidemic disease
        2
        : an outbreak or product of sudden rapid spread, growth, or development

        Here is an excerpt from a review of “Anatomy of an Epidemic” by Dr. Marcia Angell, former editor-in-chief of the the New England Journal of Medicine:

        “A large survey of randomly selected adults, sponsored by the National Institute of Mental Health (NIMH) and conducted between 2001 and 2003, found that an astonishing 46 percent met criteria established by the American Psychiatric Association (APA) for having had at least one mental illness within four broad categories at some time in their lives. The categories were “anxiety disorders,” including, among other subcategories, phobias and post-traumatic stress disorder (PTSD); “mood disorders,” including major depression and bipolar disorders; “impulse-control disorders,” including various behavioral problems and attention-deficit/hyperactivity disorder (ADHD); and “substance use disorders,” including alcohol and drug abuse. Most met criteria for more than one diagnosis. Of a subgroup affected within the previous year, a third were under treatment—up from a fifth in a similar survey ten years earlier.”

        If you compare the numbers of people who would have been considered mentally ill in, say, 1940, to the above estimate, I believe this would constitute an increase that most people would consider one of “epidemic proportions”.

        However, as astounding and alarming as the increase in prevalence of what is considered “mental illness” has been over the past half-century or so has been, this wasn’t really the main point being made in Robert Whitaker’s book, as I understand it. He was not primarily making the case that psychotropic medications are causing the burgeoning numbers of people who are, or could be, diagnosed with a mental illness. He was pointing out that since the advent of psychotropic medications, the numbers of people being PERMANENTLY DISABLED by mental illness has been rising. This, of course, flies in the face of the narrative that continues to be repeated: that psych meds, by correcting the underlying brain chemical imbalance, have ENABLED more and more people who would otherwise have been institutionalized to live a healthy, happy and productive life.

        Anyway, thanks for your thought-provoking comments, Mental2. This is the kind of dialogue we need!

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