On Deciphering Recovery for the American Psychiatric Association: Lecture on 13 Innovations to Improve Recovery for Schizophrenia and Bipolar

Will Hall
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On October 6 I gave a lecture to the American Psychiatric Association Institute on Psychiatric Services in New York City, entitled “Mental Diversity: 13 Practical Innovations To Improve Recovery Outcomes for Schizophrenia and Bipolar.” You can listen on the Beyond Meds website here:

http://beyondmeds.com/2012/10/07/will-hall-speaks-to-apa/

Afterwards I was humming with energy and had a day in New York before heading back to Portland, so in a sleep-deprived state I wandered over to the Museum of Modern Art. One of the exhibits was a retrospective of the Brothers Quay, whose remarkable stop motion surrealist films have fascinated me for years. The show title? “On Deciphering the Pharmacist’s Prescription for Lip-Reading Puppets.” It was that kind of week.

How did the APA talk go? Overall a success– the audio went viral on the internet, and the talk itself was so crowded we had to move to a larger room — more than 70 psychiatrists and behavioral healthcare professionals attended. Afterwards many stepped up to shake my hand and congratulate me: I was told by two people I was a gift to the conference, asked to present at a Grand Rounds, encouraged to do a TED talk, thanked for my compassionate response to a question about forced treatment, and invited to do more trainings in the future. I even met several psychiatrists who are Madness Radio listeners. Psychiatry is clearly not a monolithic profession and many in it are beginning to think differently.

This individual support was encouraging, because not all of the comments and questions during the lecture were positive. One psychiatrist raised a puzzling criticism I hadn’t heard before: why focus on protesting psychiatry when the rest of society – such as nursing homes and medical care in general – is also deeply harmful? My response? I agreed with him, and told the crowd that we should be protesting everything – which got a big laugh. In my work I often build bridges with broader social justice movements, and it was ironic, and welcome, to hear this suggestion from a psychiatrist.

Later the doctor sitting next to him stood up and had a harsher response. Partly turning her back to me and facing the crowd, she essentially accused me of being a Scientologist (the anti-drug cult busy discrediting genuine efforts at mental health reform). I pressed her but she couldn’t be more specific or identify anything inaccurate in my talk, so I invited her to start a public exchange on the Mad In America blog. I reiterated my view that medications are often helpful to people, and by the end of the interaction she was more open to me. I was still a bit shaken.

Then afterwards two colleagues from NAMI, the National Alliance for the Mentally Ill, came up to me in the hotel lobby. They didn’t like that I had referred to the Senator Charles Grassley hearings on drug company corruption, which revealed publicly that more than 60% of NAMI’s budget was from pharmaceutical company funding. The colleagues said that NAMI has since reduced pharma funding to 30%, and that I was unfair for singling them out when other groups claiming to be grassroots also take drug money.

I’m always open to improving my facts and accuracy, but my 60% figure referred specifically to the Grassley hearings and I don’t feel a need for a public retraction. (I also can’t speak to whether NAMI has in fact reduced its reliance on pharma funding.) Our discussion continued, and I got a fascinating window into some of the inner politics of NAMI.

NAMI has a strategic initiative to reduce pharma funding, which is in part a public relations response but also a recognition, on some level, of the problems this kind of conflict of interest has created. There are more people with mental health diagnosis in NAMI leadership these days, some of whom who don’t subscribe to the medical model, drugs-and-force-are-the-answer, stay-on-Pharma-message approach that NAMI has taken.

It is true that other groups claiming to be grassroots also have the same conflict of interest problem with pharma funding, such as the Depression and Bipolar Support Alliance, Mental Health America, and Active Minds, and I’ll take to heart the suggestion that I name these groups more. I also recognize that Pharma is an easy target when the insurance industry, FDA, and other parts of the medical industry also deserve scrutiny.

In general I came away from the dialogue in the lobby encouraged that we were all trying to listen to each other, and feeling that there was real opening for feedback and discussion. Many people in NAMI are working, from the inside, to make change.

Though it does a lot I strongly oppose, and NAMI has played a key role in undermining effective mental heath care in the US, it’s worth repeating what I often say when the subject comes up: NAMI also does some things that I agree with, such as lobbying against social service budget cuts, challenging media stereotypes of violence, addressing mental health issues in prison, and providing support groups for families where no support would otherwise be available. I’ve met and worked with NAMI groups and members. I have no interest in vilifying NAMI, and I’m glad there are progressive people trying to reform the organization.

While I feel deeply wounded by much of what has come out of NAMI, I’m also trying to build bridges and create collaborations where possible. We do need to take strong, uncompromising stances, but I don’t like the Us versus Them approach on both sides. We are all humans and our politics and organizations are never simply monolithic. I hope we can all agree that our society and the mental health system can do much better to help people.

One of the points in my APA lecture that day was to call for “trialogue” between patients, family members, and professionals. Trialogues are making headway in Ireland and Austria, and I hope they can develop here. NAMI’s allegiance with pharma should be a topic in that dialogue – as should the aggression and scapegoating on both sides. Overall the exchange I had with the NAMI representatives was valuable (if a little nerve-wracking at first), and I appreciated the discussion they initiated. I hope we get a chance to continue the dialogue, and at the same time I don’t plan to hold back my views – and I wouldn’t expect them to either.

If you’ve heard me talk before you may notice I brought a different style to the APA. I was aiming to fit in to the research culture there, citing the best studies and journal articles I could find and loading the talk with information (I’m amazed I did the entire speech in an hour). The setting added to the formality, as I was standing at a podium on a raised platform and the room was arranged in rows like a university lecture hall. The two young professionals who introduced me and moderated the session were dressed in suits, and while I considered wearing the “Psycottish and Proud” t-shirt I bought at the Hearing Voices Congress last month, I settled on a simple dress shirt and jeans. I did my best to reach out to a crowd that might have been prepared for a fight, and by the end I think I managed to disarm opponents and win allies.

A highlight was telling everyone I was heading to the protest afterwards organized by Voices of the Heart and Mindfreedom. What better symbol of my efforts to break down walls and build bridges than being a lecturer at the American Psychiatric Association in the morning and then protesting the same American Psychiatric Association in the afternoon? (I headed to the SAMHSA-funded Alternatives conference the following week, so I guess I now have all the bases covered.) I invited all the psychiatrists in the room to join the protest, and it was great to see at least two of them show up at UN plaza for the rally, believe it or not. I’ll take it as a little sign of progress.

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30 COMMENTS

  1. Wow, what an awesome and courageous experience! Will, you have absolutely embodied what we all need to be doing in our discussions with psychiatrists, NAMI, and the rest of the “mainstream” world. I am so happy to hear of the support you received from within the rank and file of the APA – it’s encouraging to know that such people are there and willing to speak up.

    I would encourage us to take a different approach re: the “Scientologist” accusation. It is the APA who has worked hard to discredit Scientology and to associate anyone who disagrees with them with that religion. In doing so, it is PSYCHIATRY, not Scientology, that is intentionally discrediting genuine efforts at mental health reform, using the “Scientology attack” as their foil.

    My response to such attacks is simple: “What does religion have to do with whether or not the current psychiatric paradigm’s effectiveness is supported by scientific evidence?” Or “Why are you talking about religion? I thought we were talking about science here?” We don’t have to defend ourselves or defend Scientology – we can simply label the ad hominem attack for what it is – an intentional distraction from the issues at hand.

    I think we really need to take that bludgeon out of their hands – the fact that the Catholic Church opposes abortion is neither here nor there in arguing the pro-life/pro-choice issue, and the fact that Scientology is opposed to psychiatry has no bearing whatsoever on whether psychiatry is scientifically supportable in its current form. This kind of blunt turning of the tables also exposes the attacker’s strategy and makes it less likely that others will try the same tactic in the future.

    That aside, I am totally impressed by your efforts and delighted at the response you got. Maybe you can get them to start a “psychiatrists for reforming psychiatry” support group, starting with the attendee list for your lecture! It was also fascinating to hear your account of the insider politics at NAMI. I think it’s a great reminder that almost any organization can be amenable to reform – there are always rational people in ANY organization whose better sense can be appealed to. Sometimes it’s not even necessary to convince the leaders to change direction – sometimes, the rank and file changes direction and the leadership has to change or will be changed by its constituents.

    I will share another bit of hope. I did a “mental health” training recently for CASA volunteers, none of whom are trained in mental health care – they are volunteers off the street. When I asked them about their belief in “chemical imbalances,” one of the audience commented, “Isn’t that kind of a discredited theory these days?” The word IS getting out and public perception IS changing, if slower than we’d like.

    Thanks for this wonderful message of hope, and for the awesome work you do in Portland and around the country!

    —- Steve

    • Will Hall, I was also stunned by what appeared to be a pointed hostile suggestion that you were indoctrinated by Scientology.

      This happens all the time when you criticize the existing psychiatry paradigm. It’s very strange and seems to come from only US psychiatrists. Why?

      Here’s a comment on this I’ve posted elsewhere:

      The position of ideologically motivated groups such as Scientology happens to converge with findings of those who want to improve care in psychiatry. Not all critics of psychiatry are ideologically motivated, they have well-documented reasons for their criticisms. If Scientology is anti-psychiatry, are those people also anti-psychiatry?

      Is there something about psychiatry that is above criticism?

      I’m puzzled by how large Scientology looms in the view of US psychiatrists when they hear criticism of psychiatry. I keep up with news in the mental health industry and I never see Scientology-produced information there.

      I live in a US city [San Francisco] where Scientology maintains several offices, yet I rarely see evidence of Scientology activities, except occasionally there’s a table set up on a street corner where they offer to read your aura or whatever it is they do, claiming to cure all mental ills. (We also have Jehovah’s Witnesses going door-to-door, they abjure psychiatry, but I’ve never seen a psychiatrist rant about them.)

      Scientology has a front group (so Wikipedia tells me), CCHR, producing criticism of psychiatry, but their stuff is easy to avoid on the Web.

      So I’m wondering how actively psychiatrists are harassed by Scientology, or if it’s a convenient straw man to associate with the term “anti-psychiatry,” as a defense against the impact of criticism. Non-US psychiatrists participate in intelligent discussion about failings in their profession without resort to this device.

      Or maybe this fear of Scientology is a proxy for the uncertainty clinicians feel in their own practices. David Healy, a UK psychiatrist often accused of being “anti-psychiatry,” recently addressed the American Psychiatric Association http://healthland.time.com/2012/10/05/psychiatrist-contends-the-field-is-committing-professional-suicide/ with the observation that his profession is “committing professional suicide” via its symbiosis with the pharmaceutical industry.

      Perhaps it’s the subconscious realization that drug-oriented psychiatrists hold a losing hand that drives this preoccupation with Scientology.

  2. Will, I was so impressed by how much you got into an hour’s speech! Brilliant! Well done.

    (Thanks so much for mentioning the need for tapering off psych drugs at the Alternatives conference.)

    Please do present Grand Rounds and training and, if you’re invited, a TED talk!

  3. Will,

    A lot of people use the term “building bridges” and really mean nothing of the sort. You, on the other hand, are part of an iconoclastic and strange breed that absolutely means it. When you say it, I believe you and commend you for it.

    Not many people can present at the APA and then protest it without some serious hypocrisy. You can. I love it! Go Will! You are a cult of personality. I, too, hope you do a TED talk…

    Thanks for living beyond labels,
    Emily

  4. Thanks Will, for bringing some real “insight” to the APA, for sharing your thoughts here, and for your great keynote at the Alternatives conference.

    Just one thought about a tricky point: rather than say that psychiatric drugs have helped a lot of people, I often say that these drugs appear to be helping a lot of people, and may actually be helpful to some of these people in the long term, though I also don’t want to ignore the fact that the evidence seems to show that many who seem to be being helped are probably more hurt than helped when the long term is considered.

    That takes a lot more words to say, but it highlights the way drugs are likely to trick people into thinking they are being helped when they really aren’t, and it suggests that people might want to think hard before accepting superficial evidence that someone is being “helped”. At the same time, it takes an open minded sort of position, acknowledging that drugs may sometimes be a good choice for some people, even though it is hard to figure out when that may be.

        • I agree much seems to be due to peer pressure and cognitive dissonance — whatever you’ve invested in, you’ll defend its value.

          However, there are people who insist they were helped. I was one of these once.

          Will Hall said the action of the drugs and whatever benefit might be perceived is because they’re psychotropics, distracting the nervous system. I have no doubt that people actually feel an effect from the drugs, just as they would from LSD or MDMA.

          In some cases, I think it’s entirely possible the neurological distraction is accurately perceived by the individual as helpful.

  5. This was a great talk. I was priviledged to be in the audience. I was puzzled by the questioner who alluded to Scientology, “the elephant in the room” was how she put it as I recall, and I thought you handled her remarks with grace.
    Thank you for the work you are doing and for being a role model for someone who stands up for your beliefs while treating others with respect and patience.

  6. It’s wonderful to hear about this Will- thank you for your courage and willingness to find common ground wherever possible.

    We are on the right side of history in this struggle and opponents can become allies at times, when we welcome them into the circle of common ground. We don’t have to sacrifice our integrity to do that. Sometimes that circle of common ground can feel like sacred ground.
    Bless you for your tireless and inspiring service.

  7. This post raises the taken for granted nature of an “us vs them” attitude in public debate, and why its so incredibly difficult to build bridges? As Will relates this story of an attempt to ease the psychic pain of cognitive dissonance, with this “your one of them” disavowal.

    “Later the doctor sitting next to him stood up and had a harsher response. Partly turning her back to me and facing the crowd, she essentially accused me of being a Scientologist (the anti-drug cult busy discrediting genuine efforts at mental health reform). I pressed her but she couldn’t be more specific or identify anything inaccurate in my talk, so I invited her to start a public exchange on the Mad In America blog.”

    Consider this explanation of belief’s in our social politics of self-differentiation and the psychic injury to each individual, caused by belief’s being challenged;

    “Cognitive Dissonance:

    This is the uncomfortable feeling that develops when people are confronted by “things that shouldn’t ought to be, but are.” If the dissonance is sufficiently strong, and is not reduced in some way, the uncomfortable feeling will grow, and that feeling can develop into anger, fear and even hostility. To avoid cognitive dissonance people will often react to any evidence which disconfirms their beliefs by actually strengthening their original beliefs and create rationalizations for the disconfirming evidence. The drive to avoid cognitive dissonance is especially strong when the belief has led to public commitment.

    There are three common strategies for reducing cognitive dissonance. One way is to adopt what others believe. Parents often see this change when their children begin school. Children rapidly conform to “group-think,” and after a few years, they need this particular pair of shoes, and that particular haircut or they will simply die. The need to conform to social pressure can be as psychically painful as physical pain.

    A second way of dealing with cognitive dissonance is to “apply pressure” to people who hold different ideas. This explains why mavericks are so routinely shunned by conventional wisdom. To function without the annoying psychic pain of cognitive dissonance, groups will use almost any means to achieve a consensus reality.

    A third way of reducing cognitive dissonance is to make the person who holds a different opinion significantly different from oneself. This is normally done by applying disparaging labels. The heretic is disavowed as stupid, malicious, foolish, sloppy, insane, or evil and their opinion simply does not matter.

    When we are publicly committed to a belief, it is disturbing even to consider that any evidence contradicting our position may be true, because a fear of public ridicule adds to the psychic pain of cognitive dissonance. Commitment stirs the fires of cognitive dissonance and makes it progressively more difficult to even casually entertain alternative views.” _Dean Radin.

    Of coarse we are all fully conscious human beings who are well aware of the stimulus to our behavioral responses, particularly the stimulus to our written words and our social politics of self-differentiation here on the MIA blog?

    The immediate perception of this disavowal of Will’s talk is one of a self-serving attack on the other, yet is the “reaction,” to Will’s talk better understood as a self-soothing NEED, easing the pain of cognitive dissonance?

    How do we build bridges in a world where “us vs them” is routinely taken for granted, with the very notion of “unconscious” motivation glaringly absent from our public exchanges? Have we grown up so much, that the miracle of modern education has made us all fully conscious? Why is the term unconscious so little used here on MIA? Would an exploration of unconscious motivation inflict the psychic pain of cognitive dissonance, in our “I think therefore I am,” intellectualized world?

    “What we’re learning in our schools is not the wisdom of life. We’re learning technologies, we’re getting information. There’s a curious reluctance on the part of faculties to indicate the life values of their subjects.” _Joseph Campbell.

    Best wishes to all,

    David Bates.

  8. Kudos!! This was a great talk! I was very impressed by the feat of having the same person talk inside and outside of APA. It seems a brilliant and very effective way to have innovative ideas discussed in the mainstream without risking being phagocytized by the system.

    I also like to thank the conference organizers that made your talk possible.

  9. Hi There Will. We’re listening to your Alternatives keynote and APA talk tonight in our Madness Radio Discussion group in Vancouver BC. We’re growing a little more fearless every few weeks. Bravo and Thank you.

    A second strong recommendation for the Quay Brothers’ exquisite work. Those who can’t get to the MOMA, get a copy of their animated shorts “The Comb (from the Museum of Sleep)” and “Street of Crocodiles”.

  10. Will,
    Thanks for telling it like it is, from an ex-patient’s point of view, and acknowledging all facets of the debate. One point about suicide from my perspective is that I often felt that the doctors raised the specter of possible suicide as a way to scare relatives (the family) into making sure their relative was medication compliant. But, how can one ever be sure that a relative WON’T commit suicide? That’s a responsibility that is too heavy a burden for most people to decide for someone else — and pharma knows this. You made a good point, but there is also the specter of perhaps “unintentional” death. I never had the impression that my son was suicidal, and I argued hard with the psychiatrist against the use of anti-psychotics, even though my son made cryptic comments about looking down at the river from the bridge. A few months later, my son got grazed by a car while in a psychotic state. I considered this not as suicide ideation, but as confusion. (He was not on medications at the time and was getting progressively worse.) I never revealed the car incident to the psychiatrist because she would have had him immediately back on medications, but my ignoring the signs could have caused a death. It’s all very complex. One thing is for sure, in my experience. The drugs, if used at all, should be used sparingly and be time-limited.
    Best regards,
    Rossa