Showing 69 of 69 comments.
This is a great story, written by a superb author!
A DISCUSSION REGARDING THE
EVOLUTION OF A SOCIAL
Philip A. Kumin
For anyone privy to the dynamics of the discussion surrounding the manifest destiny of the mental patients’ movement one thing is clear; those founding activists who survive are aggrieved at the loss of their native movement. In almost any venue in which these activists air their grievances, there is an aggregate atmosphere of nostalgia and bitterness. The perceived loss of vitality of this movement of the 1970’s is mourned. For sure, that decade was a landscape fertile for the launching of social movements, including one of deinstitutionalized and disgruntled mental patients. What then comes next?
If the psychiatric inmates’ movement was new, raw, and vital back then, it is diverse and modern today. Inevitably, and of necessity, the ranks of this movement have swelled and the exteriors of 1960’s and ’70’ s radicalisms have dissipated. This evolution does not preclude authenticity, however. It was exciting to be in the midst of a new, moral imperative which fired activists to a frenzy, and it can be this way again. What I’m saying here is that the appeal of ex-inmate activism had at least as much to do with the era in which it occurred as it did the substance of the grievances.
To clarify things even further, when we talk about the vitality of the patients’ movement in the 1970’s what comes to mind is the rage with which activists delineated their complaints. These complaints were intertwined with styles of protest popular in the 1970’s, styles which have changed since then. It may be that surviving veteran activists mistake differences in style for a dearth of fervor on the part of today’s generation of antipsychiatry activists. I don’t believe this to be true at all as the mental health system of today revolves just as tightly around the flawed medical model paradigm as it was doing in the 1970’s. Patients unquestionably continue to suffer.
In 1978, activist Judi Chamberlin wrote her book, On Our Own: Patient Controlled Alternatives to the Mental Health System. The book articulated and codified the philosophies of the mental patients’ movement and became, in effect, a bible thereafter. In 2019, we are seeing embellishments and implementations of the blueprint therein.
One such development has sprung from the fact that in contrast to the 1970’s, it is now more practical for mental patients to attend school and acquire college educations. Indeed, there is a growing pool of graduates who are former inmates. From the antipsychiatry movement’s point of view, it’s also an established fact that the results of any scientific studies dealing with mental health issues which are conducted by researchers who are not themselves former patients, are skewed in favor of the Establishmentarian medical model point of view. Because those researchers have a lot of academic credentialing and respectability, what they announce is instantly believed and accepted by the public.
Former inmate, Dr. Nev Jones, a researcher at the University of South Florida, is one such beneficiary of the new access to an academic life for former mental patients. Dr. Jones is now spearheading an effort to encourage other patients who are considering grad school to become researchers too. The intent of this plan is to accrue a pool of researchers who are former patients, who will then counter the opportunistic distortions of non-patient researchers.
Alex, do you have a private email address I can contact you at? I’d like to tell you a little more about how I was, “introduced,” to Rev. Luke, (whom I’ve never met,) and began to read his writings. I see he lives in Portland, Oregon. I don’t know if he realizes this or not, but if he ever chose to become an author, he’d have an incredible career ahead of him.
My email is: [email protected]
Annette, all of this is simply superb. I wish for nothing other than perpetual good luck for you, with the rest of your life. And thank you for articulating how it is that OD works. I hadn’t been clear about that. Thanks, again. God Bless.
Alex, Rev. Luke A. Walters (Shootingstar) has a page on Linked In.
Jewish and Latino, eh? Interesting combination, though not one unheard of. My niece, Jewish/black, lived in a college dorm with a Jewish/Puerto Rican girl.
These Comments sections of MIA are being used not only as expressions of thought following each featured article, they also serve as literary forums for at least two prolific writers: myself and Alex, among others. This is superb! What more could we ask for than for these commentaries to serve more than one purpose at the same time: an informative one, and one of oratory and rhetoric? This is what’s known as, “getting more bang for one’s buck!”
Alex’s style of writing is suspiciously akin to that of the Rev. Luke Shootingstar. Alex…are you one and the same with him? I’m a devoted follower of Rev. Luke’s words, about which there’s a certain irony.
Rev. Luke is a very spiritual author, you can tell that his words come straight from his very ecumenical heart. Read merely one of his flowing pieces and you fall instantly in love with him. He’s the quintessential Evangelical who has no need to proselytize.
Julie Greene, above, insists my post above hers is, “awesome.” To me, it’s Alex/Rev. Luke who’s awesome. I’m hopelessly hooked.
I think this is a superb article which, I now realize, very neatly sums up the past forty years of my life. I particularly like Eric Greene’s description of a psychological, “container,” in our heads, and what exactly it is that that container does. First though, some important foods for thought. Unfortunately the median living expenses quoted in the fifth paragraph down are kind of confusing. For example, Eric suggests that someone who earns no more than $2,300 per month, nonetheless has credit card debt of $4,000, without explaining whether he means monthly or yearly.
There are plenty of people who rightly excoriate credit cards and the companies who issue them; these are seen as conniving accoutrements of the corrupt wealthy elite, designed to ensnare and hopelessly indebt hapless individuals. The most sensible answer than is to pay for everything in cash, and to not bother with any filthy credit cards.
Eric also mentions the cost of gas money as a, “necessary,” monthly expense. This isn’t true if you don’t own a car, an exceedingly expensive proposition, all costs considered thereof. Frankly, transit systems around the country are gradually getting better. I’m privy to information regarding this.
That said, I fully acknowledge that biting the bullet such as I suggest doing above, isn’t likely to make a whole hell of a lot of difference in someone’s life. I had long been convinced that the system of meritocracy was nothing but a deliberately misleading fraud; I’m glad to now have this corroborated by Eric Greene.
I’m still not convinced that socialism is the answer, since it didn’t work anyplace else in the world. But I’m terribly stuck between a rock and a hard place.
I’m intrigued by what you say about having been published by CCHR, Julie. The Church of Scientology, (parent to the CCHR,) declined to publish one of my vignettes in their publication, just as everyone else had done before I submitted to Scientology. And this is an organization which purports to be rabidly/radically antipsychiatry?! I couldn’t even get them to come to the
phone when I followed up on my submission with a phone call.
Oldhead, this is simply a letter I wrote to Ted Chabasinski, it doesn’t have anything to do with the discussion that’s going on. I wanted people to see it.
Ted, let me answer the points you’ve made regarding my article on Linked In. By the way, you and I have communicated before. I once sent you an email telling you that I had seen you at the Alternatives ’85 conference here in Baltimore, but didn’t actually introduce myself to you. Do you remember that?
You’re one of the few surviving activists of the original mental patients’ movement in the ‘70’s. I’ve paid homage to you for that. It’s obvious from the things you’re always saying, that you feel that the Movement was coopted and ruined after 1985. It’s also obvious that you really enjoyed being a part of what had gone on previously. That makes perfect sense. It was FUN! All of the demonstrations and protest marches of the ‘70’s, with patients chanting slogans in unison and pumping their fists into the air! I’m sorry you weren’t present for the Alternatives ’90 conference, which was held in Pittsburgh that year. As part of the conference, a big protest march was held. I don’t remember the exact number of people who participated in it, but it was huge. I think just about everyone who had come to the conference participated in it, and numerous others too. We assembled up on a hill outside of the immediate downtown area. We then marched into downtown Pittsburgh. Somebody, somewhere, had a megaphone and led the call-and-response chanting. At one point in the parade route, we passed through a short tunnel underneath some railroad tracks. Since we were momentarily in a chasm, the sound of our chants was magnified and reverberated back and forth between the walls! There was such a sense of solidarity, conviction, and authenticity! I had been to many other protest marches before I was ever involved in the mental patients’ movement. But this one was by far the greatest one I’d ever been a part of. We got VERY favorable press coverage from both the Pittsburgh newspapers as well as the Philadelpia Enquirer, unlike the usual lousy shit they’re always saying about us. I’m SO sorry you weren’t there! You would have had a very good time. You may know that soon after that conference SAMHSA, the federal government agency which was funding our conferences, cracked down on us, and told us we couldn’t any longer stage demonstrations at our conferences if we wanted to take any more money from them. So, one of the very nice things about our conferences not any longer being government-funded is that we’re free to have them again. It would probably be a good idea for me to discuss doing that with Dan Fisher.
But listen, Ted, let’s face it: there’s only so much that protest marches can accomplish. What’s going on today is the REST of what needs to be done. The fervor within the movement back in the ‘70’s hasn’t disappeared. It’s still there, and it always will be. What patients are doing now is IMPLEMENTING the ideals Judi Chamberlin laid out in her famous book. There is a tremendous push going on now, successfully, to compel mental health professionals to accept the validity of peer counseling and self-help. More and more jobs ARE being created now for peers in the mental health system. I know this is what you’ve always thought of as patients, “selling out,” to the Establishment. But listen, what better way is there to fight the stigmatization of us by professionals than to prove to them that we’re far better at helping people than they will ever be?!
There’s another development going on which I’m REALLY excited about.
Apparently it has become somewhat easier than it used to be for mental patients to go to school and get college educations, (wish I’d had that kind of luck.) As a result, there are more patients graduating and then going on to grad school. One of these people was a patient named Nev Jones, down in Florida. I don’t know what she’s got her doctorate in, but I know she’s a researcher. She’s spearheading an effort to encourage other patients who are considering grad school to become researchers too, and there’s a very important reason for this. I probably don’t have to tell you that Nev Jones is totally open and public about her status as a former mental patient.
It’s an established fact that the results of ANY scientific studies dealing with mental health issues which are conducted by researchers who are not themselves former patients, are skewed in favor of the Establishmentarian medical model point of view. Because those researchers have a lot of academic credentialing and respectability, what they announce is instantly believed and accepted by the public. So, the point of Nev Jones’ effort is to accrue a pool of researchers who ARE former patients, to counteract the opportunistic distortions of non-patient researchers. These patients will be able to prove the validity of their differing findings because they will be just as well educated and respectable as those other researchers. There are a lot of great things like this in the works, Ted.
Regarding your fears about the effect Trump could have on us, I don’t think there’s anything to worry about. He may be mouthing silly stuff about putting all of us back in institutions, but he’s far too much of a clown to know how to actually do it. When he makes remarks like that, he’s simply parroting other similar fools. That’s where he got that idea from.
Julie Greene, God knows I wish you the best of luck with your writing/publishing endeavors from here on in! I’m glad to see your reputation has been restored! That might help future sales.
The present publisher of my book has never sent me anything in the way of royalties other than a handful of paltry checks. They’ve never sent me any truthful, accurate sales info. Each time I’ve called there to see if there had been any sales, I’ve simply been told there hadn’t been, which I do not believe. As for problems with, “adversaries,” it’s quite accurate to say that I’ve had those, Big Time! My worst adversary is my publisher, along with Amazon.com, who’s been selling copies of the book for the past 20 years, but who refuses to give me any information about sales. My publisher and Amazon are getting fat off of the proceeds from my book without sharing any of the money with me, or so it seems.
As I mentioned before, there’s the possibility I’m actually getting the legal help I need to get this all straightened out, and I’m simply not being informed of that. If that’s the case, there’s only one explanation as to why that’s being done to me. I think I know which two lawyers are involved in doing this. These two guys have probably known that it might take quite a while for the legal work to be concluded, (3,4, or 5 years?) Perhaps in the meantime, they don’t want me pestering them with phonecalls (?) Go figure.
I don’t know, y’all. When my therapist learned of the censorship I had incurred from the print media in regards to many vignettes I’d written, all of which were rejected by publications large and small, he suggested I write a book instead and self-publish it. Though I had never written a book before, and doing so seemed like an exhaustive, gargantuan task, I went ahead and did it anyway, and had a ball in the process. That was now 28 years ago, and I’m still completely in the dark regarding whatever became of it.
I do have my strong suspicions about what has happened to that book, though. To begin with, I’m a pretty good writer and when I was writing it, I did so with the belief and intention that it would become a success. It’s been a long time now since complete strangers began to greet me on the streets, (there’s a photo of me on the back cover of every copy.) There’s a distinct possibility that, at this very moment, I’m getting the legal help I need in order to find out eventually what the book’s fate has been. But legal processes take years, and I’m being given no other choice but to wait for the Day Of Revelation. I can’t tell for sure, but I’m convinced there’s a whole crowd of people out there, (including a few at Mad In America.com,) who have all the information about my book which I crave. It’s as if there’s a near-cosmic conspiracy going on to deny me the ownership of my book. I thought I’d already been through plenty in life before I ever wrote the thing. Do I need this on top of it?
Last summer, I went to the Alternatives conference, as did Mike Finkle from the On Our Own of Maryland organization. Dan Fisher was there too, and I came upon the two of them shooting the breeze over dinner. Mike Finkle is someone who almost unquestionably has the information I’m trying to get my hands on regarding my very own book. All I can say is that for the rest of the conference, Dan Fisher had a look of sheer astonishment on his face each time he looked at me. Another telltale sign? It made my day.
I guess I’ve been luckier than you were, Megan. The social worker I’ve been seeing for 31 years now recognized my predicament in no time at all. Not only did he validate it, he then went out and got me the legal help I needed to remedy it. Good luck to you from here on in, I really mean it.
I hope not, Rachel!
Rachel, to elaborate further, I don’t buy into N.A.M.I.’s incantation that the reason why patients become homeless is because they’re too sick to know what’s good for them. Being in another stratosphere may or may not have something to do with that. But even if it does, the other 50% percent of the reason why patients choose homelessness and make the decision to go to jail, is because this is the only means of protest we have at our disposal. This is the only monkeywrench we’ve got available to us to toss into the Establishment’s machinery. Hence, the neverending rise in rates of homelessness I anticipate. I hope this clears things up for you.
Let’s hear it for the aroma!
Rachel 777, I’m not an expert in any of this stuff, but I’ll tell you what it is I’m thinking about regarding my comment above.
Last summer when Mickey Weinberg was exhorting us to write letters to Benedict Carey of necessity, I think he explained to us that the strategy behind doing this would be that this would be a way of publically discrediting psychiatry, assuming Carey was willing to cooperate with us. I hope I have that right. I thought it was a great plan and I’m sorry it doesn’t seem to have panned out, at least not as yet.
I’m simply suggesting that, eventually, the homelessness epidemic is going to grow to such gargantuan proportions that this objective of ours will be accomplished afterall. Speaking of homelessness, is that what the term, “zombie apocalypse,” refers to?
Actually, Oldhead, I understand PERFECTLY where you’re coming from with the above remarks.
I honestly don’t know what kind of “collaboration,” there will be or should be, between victimized patients and others. Maybe in all of our bumbling ways, we’re all getting stuff done under any circumstances. Bonnie Burstow certainly seems to be doing great things in Canada.
I’ve reached the point in life where I’ve come to the conclusion that the entire scandal which is the medical model MH system, will eventually self-destruct. I think the homelessness problem is the Achilles’ heel in the Establishment’s designs against patients, and that this will eventually blow up in the Establishment’s face. I hope I’m not being overly optimistic.
Look, Oldhead, the only way we’re going to recapture our annual gatherings, (call them what you like,) is if longtime dedicated founding activists such as you, David Gonzalez, Ted Chabasinski, Jay Mahler, George and Marianne Ebert, and whoever else is still with us from the ’70’s start ATTENDING them again! And I don’t just mean once, I mean CONSISENTLY! As far as I can see, it’s only that kind of sustained pressure which will succeed in wrenching the hearts and souls of these conferences away from the clutches of Dan Fisher and his silly milque toast compatriots. Financial aid is available for attendance, for crying out loud! I know because I’m the one who coughs up money for this every year! By the way does the name, Sally Zinman, ring a bell with you? Sally’s one of the very few surviving founding activists from the ’70’s. She’s now in her 70’s, and SHE still comes to these conventions of ours. Were you aware of that?
Oldhead, I agree with you in the sense that, hopefully, it remains to be seen how far Dan Fisher gets with his designs to coopt the patients’ movement with his milque toast/Establishmentarian constrictions . Dan is both a patient and a psychiatrist, meaning he has the Establishmentarian respectability which so many foolish patients crave and salivate over. He’s far more of an Establishmentarian psychiatrist than he is a patient, however. He’s exactly the kind of enemy you’re describing above. On the other hand, our annual gatherings are no longer government funded, probably a good thing. I like to think my money helps to sustain the tradition of these conferences. And I did state in my other post that we need to reclaim this tradition from Dan and the rest of the Establishment.
Lee, during my senior year in boarding school in 1971, a very popular book was making the rounds of the students in that small school. Everyone, including yours truly, read it. I think the title of that book was…Black Rage? It’s been so many years since then, I’m not quite sure anymore. However, do I remember correctly that you were its author? Though I do not now remember much of what it said, I definitely remember reading it. Those were heady days, weren’t they?
How ironic that I’m encountering you personally, albeit on the internet. And on a first name basis with you, no less! I’m glad to see that you’ve survived and prospered through the years.
I’d also love to see the name of our annual gatherings revert back to that of the International Conferences for Human Rights and Against Psychiatric Oppression. This was so much more of a dynamic, in-your-face title than any staid moniker such as an, “Alternatives Conference.” First, though, we really need to repossess these gatherings from Dan Fisher, who uses them as conduits for his own personal priorities, all of which are extremely milque toast and pro-status quo Establishment-oriented. No radical is he, not by a long shot. He’ll even confirm that to your face if you ask him.
I have a number of differences with Dan, though these do not include his altruistic outreach to me. I send the organization he founded and owns, the National Coalition for Mental Health Recovery, money each year. In a week or so, I’m going to send him my contribution for 2019 which will be $2,000. I think Dan uses this to help fund the cost of our annual gatherings since we, blessedly, don’t have anymore S.A.M.H.S.A. money for them. These conferences have been so much of an integral part of the mental patients’ movement for decades that I don’t want to see them whither on the vine, such as some would be perfectly content to see happen. I also send an equal amount of money to MindFreedom each year.
I, personally, would love to see us refer to what we do as what I believe was the original nomenclature in the 1970’s: the psychiatric inmates’ liberation movement. This is far more dynamic and hard-hitting than anything as silly and milque toast as a, “consumer movement,” a term S.A.M.H.S.A., (N.I.M.H.) came up with when they coopted what we were doing by funding our annual conferences.
That’s all over with now, thank God. Why not dispense with their masquerade job for us and go back to our dynamic roots?
Frank Blankenship, I haven’t as yet seen what wikipedia has on N.A.M.I. Do you know who Mike Finkle is, however? When I was working as a peer counselor in On Our Own’s drop-in center in the mid 1980’s, Mike was the second in command there. He was, and still is, involved in a tremendous amount of statewide advocacy. Back in those days, there was a statewide advocacy coalition which consisted of the Maryland N.A.M.I., the Maryland M.H.A., On Our Own, and an umbrella organization representing all of the psychosocial programs here. For a while, Mike was the entire coalition’s lobbyist in Annapolis. Mike introduced me to Jim and Carol Howe who lived in Montgomery County, MD, and who Mike told me had founded N.A.M.I. in the late 1970’s. Of the two of them, Carol was the more accessible one. She once bought me a drink at a coalition function. This was quite some time ago, and I don’t have any idea what happened to them. But the story I got from Mike was that N.A.M.I. began in Maryland.
Sera, this is a great article for which I’m grateful. But…DUH!
Still showing up on my feed, Oldhead, though maybe I shouldn’t publicize that.
Bradford, I think Oldhead is referring to, “people of color.” That’s what POC means.
Well, nice try, Oldhead. You’re certainly not going to trap me in that one. I stated my case above.
Removed for moderation.
I think this is a great article, but Will Hall really does flip flop back and forth throughout.
I eventually drifted from my youthful flirtations with liberal politics as I got older, and saw more and more of what this world is made of which is bad. However, I’m really grateful to Will for reawakening within me an appreciation of the larger legacy for which Dr. King is known, via Will’s eloquent enumerations of King’s significances. Can’t we get away from this infernal use of the term, “racism,” though? Will actually acknowledges King stood for something far greater than race. You know perfectly well that the term, “racism,” has very bad connotations to us Republicans. At the very least, it’s limiting.
Will also talks about the importance of the language we use when self-describing. Will is a very articulate guy and because of this, you can actually see how we disempower ourselves by using pat, superflous jargon. A word of caution here, however; too much emphasis on the specificity of words used opens one up to accusations of political correctness, and the subsequent censorship of vocabulary used. The two of these things must not be confused.
One occasionally hears, (more and more frequently,) exhortations to abandon the capitalist system in order to achieve a trauma-free, economically equal society. As far as I’m concerned this is nothing more than nostalgic, 1960’s poppycock. Even if we didn’t remain in this era of Trump and the Republicans, do you think there would be any likelihood of the U.S. economy converting to that of socialism? Socialist governance blew up in the faces of its protagonists in the late 1980’s. Remember?
For what they’re worth, these are my two cents’ worth on this report.
This article is too long and technical for me to fathom. However, it disturbs me greatly to see that there’s ANY negative criticism of OD at all. For the past several years since I first learned what OD is, I’ve relied on it as a sort of beacon of hope to guide us out of the netherworld of the medical model. The medical model is a horrifying black hole which must be neutered at any cost.
Anja, the treachery of the mental health system doesn’t stop merely with its refusal to recognize the precariousness of a patient’s life when it sees it. No, things go a lot further than that.
I was mismedicated, incredibly depressed, and suicidal one night in 1987 when I had the good sense to try to get into a hospital. I requested voluntary admission in the ER I’d gone to, an interval I had the insurance to pay for. In order to deny my request, hospital staff completely perverted the state’s involuntary committment statute in order to say NO to me. My life was really
in danger because of this, such as it had never been before. I didn’t know WHAT to do; this was like being hit with a ton of bricks. Even now, I don’t think I’ve completely recovered from this. At that time, no crisis bed programs had been established yet in Baltimore City. There was no alternative.
I am not by any stretch of the imagination, a fan of N.A.M.I.’s. But I must say that the kind of systemwide /societywide disregard for the sanctity of patients’ lives which I ran into that night, is the kind of thing N.A.M.I. loves to sink their teeth into.
Steve, for the record, Gail Hornstein isn’t a shrink, she’s a psychologist. She teaches at Mount Holyoke College in Massachusetts. I’ve never met her, but did email with her last year. It is said she’s patient-friendly.
I also wanted to reiterate that I don’t have any idea whether the above article is Benedict Carey’s response to our request, or not.
When Will We Solve Mental Illness?
Biology was supposed to cure what ails psychiatry. Decades later, millions of people with mental disorders are still waiting.
By Benedict Carey
Nov. 19, 2018
Nothing humbles history’s great thinkers more quickly than reading their declarations on the causes of madness. Over the centuries, mental illness has been attributed to everything from a “badness of spirit” (Aristotle) and a “humoral imbalance” (Galen) to autoerotic fixation (Freud) and the weakness of the hierarchical state of the ego (Jung).
The arrival of biological psychiatry, in the past few decades, was expected to clarify matters, by detailing how abnormalities in the brain gave rise to all variety of mental distress. But that goal hasn’t been achieved — nor is it likely to be, in this lifetime.
Still, the futility of the effort promises to inspire a change in the culture of behavioral science in the coming decades. The way forward will require a closer collaboration between scientists and the individuals they’re trying to understand, a mutual endeavor based on a shared appreciation of where the science stands, and why it hasn’t progressed further.
“There has to be far more give and take between researchers and the people suffering with these disorders,” said Dr. Steven Hyman, director of the Stanley Center for Psychiatric Research at the Broad Institute of M.I.T. and Harvard. “The research cannot happen without them, and they need to be convinced it’s promising.”
The course of Science Times coincides almost exactly with the tear-down and rebuilding of psychiatry. Over the past 40 years, the field remade itself from the inside out, radically altering how researchers and the public talked about the root causes of persistent mental distress.
The blueprint for reassembly was the revision in 1980 of psychiatry’s field guide, the Diagnostic and Statistical Manual of Mental Disorders, which effectively excluded psychological explanations. Gone was the rich Freudian language about hidden conflicts, along with the empty theories about incorrect or insufficient “mothering.” Depression became a cluster of symptoms and behaviors; so did obsessive-compulsive disorder, bipolar disorder, schizophrenia, autism and the rest.
This modernized edifice struck many therapists as a behavioral McMansion: an eyesore, crude and grandiose. But there was no denying that the plumbing worked, the lighting was better, and the occupants had a clear, agreed-upon language.
Researchers now had tidier labels to work with; more sophisticated tools, including M.R.I.s, animal models, and genetic analysis, to guide their investigations of the brain; and a better understanding of why the available drugs and forms of psychotherapy relieved symptoms for many patients. Science journalists, and their readers, also had an easier time understanding the new vocabulary. In time, mental problems became mental disorders, then brain disorders, perhaps caused by faulty wiring, a “chemical imbalance” or genes.
But the actual science didn’t back up those interpretations. Despite billions of dollars in research funding, and thousands of journal articles, biological psychiatry has given doctors and patients little of practical value, never mind a cause or a cure.
Nonetheless, that failure offers two valuable guideposts for the next 40 years of research. One is that psychiatry’s now-standard diagnostic system — the well-lighted structure, with all its labels — does not map well onto any shared biology. Depression is not one ailment but many, expressing different faces in different people. Likewise for persistent anxiety, post-traumatic stress, and personality issues such as borderline personality disorder.
As a result, the best place for biological scientists to find traction is with individuals who have highly heritable, narrowly defined problems. This research area has run into many blind alleys, but there are promising leads.
In 2016, researchers at the Broad Institute found strong evidence that the development of schizophrenia is tied to genes that regulate synaptic pruning, a natural process of brain reorganization that ramps up during adolescence and young adulthood. “We are now following up hard on that finding,” said Dr. Hyman. “We owe it those who are suffering with this diagnosis.”
Scientists also foresee a breakthrough in understanding the genetics of autism. Dr. Matthew State, chief of psychiatry at the University of California, San Francisco, said that in a subset of people on the autism spectrum, “the top 10 associated genes have huge effects, so a clinical trial using gene therapies is in plausible reach.”
The second guidepost concerns the impact of biology. Although there are several important exceptions, measurable differences in brain biology appear to contribute only a fraction of added risk for developing persistent mental problems. Genetic inheritance surely plays a role, but it falls well short of a stand-alone “cause” in most people who receive a diagnosis.
The remainder of the risk is supplied by experience: the messy combination of trauma, substance use, loss and identity crises that make up an individual’s intimate, personal history. Biology has nothing to say about those factors, but people do. Millions of individuals who develop a disabling mental illness either recover entirely or learn to manage their distress in ways that give them back a full life. Together, they constitute a deep reservoir of scientific data that until recently has not been tapped.
Gail Hornstein, a professor of psychology at Mount Holyoke College, is now running a study of people who attend meetings of the Hearing Voices Network, a grass-roots, Alcoholics Anonymous-like group where people can talk with one another about their mental health struggles.
Many participants are veterans of the psychiatric system, people who have received multiple diagnoses and decided to leave medical care behind. The study will analyze their experiences, their personal techniques to manage distress, and the distinctive characteristics of the Hearing Voices groups that account for their effectiveness.
“When people have an opportunity to engage in ongoing, in-depth conversation with others with similar experiences, their lives are transformed,” said Dr. Hornstein, who has chronicled the network and its growth in the United States. “We start with a person’s own framework of understanding and move from there.”
She added: “We have underestimated the power of social interactions. We see people who’ve been in the system for years, on every med there is. How is it possible that such people have recovered, through the process of talking with others? How has that occurred? That is the question we need to answer.”
To push beyond the futility of the last 40 years, scientists will need to work not only from the bottom up, with genetics, but also from the top down, guided by individuals who have struggled with mental illness and come out the other side.
Their expertise is fraught with the pain of having been misunderstood and, often, mistreated. But it’s also the kind of expertise that researchers will need if they hope to build a science that even remotely describes, much less predicts, the fullness of human mental suffering.
Benedict Carey has been a science reporter for The Times since 2004. He has also written three books, “How We Learn” about the cognitive science of learning; “Poison Most Vial” and “Island of the Unknowns,” science mysteries for middle schoolers.
A version of this article appears in print on Nov. 20, 2018, on Page D4 of the New York edition with the headline: 2. When Will We Solve Mental Illness?. Order Reprints | Today’s Paper |
Many of us who are followers of Mad In America.com recently participated in a coordinated letter writing campaign to persuade Benedict Carey at the New York Times, to write a column for us. This effort was made up of patients, professionals, and family members, and was spearheaded by social worker, Mickey Weinberg. Two days ago, Mr. Carey actually did publish an article in the Science Times which very loosely resembles what we requested of him, though in my opinion, it is far more watered down and milque toast than what we wanted.
Assuming this article was the magic bullet we were hoping to get, I’m disturbed to see the absolute snail’s pace at which we’re moving towards the day when the cover is blown on psychiatric oppression. I agree with every single statement which Mr. Carey alludes to/makes, and I’m almost unspeakably grateful for his backing of us. The only problem with it is that the critical revelation of underlying scandal is so obscure that it looks as if it’s going to take the next millenium for the real truth to come out.
No doubt, if he had been, he never would have made it.
I’m not anywhere near as much of an expert on these matters as Philip Hickey is. But Philip remarks consistently throughout this article that he feels that Allen Frances and psychiatry are the two chief culprits to blame for the entrenched tragedy which is patients’ lives. I beg to differ. Granted, Allen Frances’ condemnation of the drug industry is on par with his of psychiatry. But there the similarity ends.
There’s an entire Establishment of filthy people who are behind the travesty which is patienthood. What about our dear friends the, “advocates?” (read: N.A.M.I.) Maybe a better criterion for determining who’s to blame and who isn’t would be to look at who’s pro-medical model, and who isn’t.
I would be very pleasantly surprised if I heard anything in response to my letter; if I do, I’ll let everybody know. My letter was nowhere near as in-depth as yours is.
Well, I’ve written my letter to Benedict Carey, and I’m quite pleased with what I came up with. Then again, though, I’m always pleased with anything I write! Cheers!
Gotcha, Mickey, I’ll do it. By the way, I met you at the Alternatives conference in Salt Lake City in 1988. I still have your calling card. It says something about the Kentucky Network on it? I see you live in California, however.
Brynne, if you don’t think there are very many hardliners on MIA, you should see what Dan Fisher’s N.C.M.H.R. listserv looks like! That thing makes MIA look like a radicals’ oasis!
A discourse amongst all the people who read the article.
OK, oldhead, I understand perfectly what you’re talking about with that. But don’t you think I simply provided two opposing views of the same issue? I stated in the very last sentence; this was merely a, “discourse.” I purposely drew no conclusions, one way or the other.
I can’t really respond to any of the comments above as they’re too cerebral, are hard to follow, and are above my head. But I’m reminded of a very recent post I saw by Susan Rogers. Susan, as many of you know was, until recently, the head of the National Mental Health Consumer Self-Help Clearinghouse, in Philadelphia. She replied to a letter circulated by someone connected with the International Society for Ethical Psychiatry and Psychology, which urged stakeholders to collectively press for a similar kind of investigation into effects of psychoactive drugs, with the aim of exposing them as being determinants of violent behavior. I thought Susan made an extremely important point in her rebuttal of this plan. She talked about how advocates have struggled for decades to break the associations between having mental problems and being violent in the public’s mind. If stakeholders are now going to embark on a journey to convince the public that mental patients ARE dangerous afterall, this makes previous years of long, hard work look like a colossal waste of time and effort. Do we really want to get started on that slippery slope?
On the other hand, for a long time, I’ve been of the belief that those efforts made by advocates have been nothing more than an obfuscation of what I believe to be the truth regarding stigma. On numerous occasions, these milque toast endeavors have seemed naive at best, and covert evasions of the truth at their worst. These seemingly never ending efforts have never done anything to address the larger fact of psychiatric oppression. Maybe it IS time to try a new approach in our efforts to break the silence.
Just a bit of a discourse here, some fat to chew. Whatever we do, let’s go slowly with it.
I started making charitable donations to MIA twice per year, several years ago. Hopefully, it was the patient activism in the 1970’s and 1980’s which garnered Bob Whitaker’s attention, which led to his decision to join us and to trumpet our cause. His work has gotten us a lot of badly needed visibility and credibility and, I think, has been a real shot in the arm to us.
I’ve noticed that MIA is a real enclave for us radicals. Contrast that with the milque toast stuff that Dan Fisher and others are always posting on the National Coalition for Mental Health Recovery’s listserv. I’m tickled to death we’ve got our own place here at MIA! Years ago, Madness Network News served that purpose.
Your suggestion about using the discussion board to organize some kind of anarchy isn’t a bad idea. But you realize, don’t you, that the government reads everything we put on here?
Steve, I think your guidelines are sufficiently flexible enough to allow for any kind or any amount of dissent, short of complete anarchy. The problem with that though, is that I’m not sure these times don’t call for such patient anarchy.
I forgot to add: I’m not at all impressed by patients accruing credentials of their own, and becoming professionals themselves. I find this erroneous rush to achieve Establishmentarian, “respectability,” to be despicable and sickening. It ignores the fact that for the rest of us patients, the Establishment is a murderous enemy.
I’ll drink to that, streetphotobeing!
Eric, this is an incredible letter, and if the judge has any decency at all, he or she will strike down your AOT order. I’d love to know what the outcome of this is. GOOD LUCK with it, man.
And Emily, I DO have to agree with everything Oldhead magnificently stated above. I understand perfectly the impulse to accrue as much formal education, credentialling, and subsequent, “respectability” as we can. Even many of us lowly nutcases have this drive within us. But I can gaurantee you that while you’re pursuing your formal studies, efforts are going to be made to pump your head full of all the filthy, crooked, medical model pigshit which professionals and, “advocates,” condone as being, “necessary,” but which is the bane of patients’ lives. I’ve long said that graduate school professors should be put in front of firing squads for their crimes against humanity,(us.) Please seriously consider the points Oldhead has made. By the way, I’ve completed yours and Nev Jones’s survey on patienthood and activism.
This is a good article, Emily. Good luck with your Ph.D work.
You mentioned the term, “anosognosia.” Just thought you might get a kick out of my perversion of it: I call it, “anal soggy noseia.” Just sayin’…
Here in the U.S., I’ve been saying the same things the author is saying, for years. This is sort of like, “DUH!”
I was an older part time student at one of the universities here in Baltimore, for 12 years. I was an undergrad, and had I gotten the B.S. degree I had done more than enough work for, it would have been my first. During the years in which I slaved methodcally away, I simply had faith that someday I would graduate. It wasn’t until graduation was imminent for me that I learned the administration had no intention of allowing me to graduate. They simply did not hold up their end of the bargain. I’m now bitterly sorry I ever thought of getting a college education in the first place, and that I wasted all the time and effort I did.
Thank you very kindly, oldhead.
This is an important article, and I’m not sure whether it was Nev Jones or Emily Cutler who wrote it. But, whichever one of you it was, you need to take some lessons in creative writing and proper diction. This article is rife with run-on sentences. You’re constantly trying to pack too much verbiage into one sentence, at the same time that you’re trying to be cute and rhetorical. It would be a lot easier to understand what you’re saying if this wasn’t the case.
Rachel777: Thank you so much for clarifying for me what Dr. K was talking about in his original article. I understand precisely what you’re talking about. Incidentally, you both might be interested in reading my autobiography, Ex-Inmate In Exile. It’s available from Amazon.com. Thanks, again.
Back in the 1960’s, there was a rebellion against materialism and Mandated Happiness. Anyone adhering to these orders was considered to be a, “teenybopper.” Remember?
In this article Dr. Kelmenson, (who should know better,) engages in the time-honored tradition of victim blaming. He suggests that patients adhere to their labels in order to evade personal responsibility in life.
I became a slave to the mental health system in 1971, at age 18. In the interval years between then and their deaths, members of my family insisted that I was nothing but an irresponsible lout. They were thoroughly oblivious to the tortured realities of my life as a mental patient, and had no capability of understanding the nuances of that quagmire. They went thusly to their graves.
Patients are never upwardly mobile or productive because the mental illness Establishment, (through the use of the invidious mechanism of stigma,) never ALLOWS them to accomplish anything, or to stand on their own two feet. This emerging and foolish, counterproductive proclivity amongst antipsychiatry activists to blame the victim, disturbs me greatly.
This is the best, and the most encouraging, article I’ve ever seen on Mad In America.com. Thanks, Bonnie.
Look, let’s face it: women are inferior creatures.
Au, I completely agree with what you have to say about, “peer counselors.”
I’m somewhat dismayed to hear your criticisms of Open Dialogue and Emotional CPR which you say are, “rebrandings.” I wasn’t aware that there were any objections to these emerging techniques at all. They certainly seem to be essential to the toppling of the tyranny of the medical model. I support the promotion of these two strategies with consistent and generous charitable donations. Should I stop doing that?
You might be interested to know, for better or worse, that money was obtained by the University of Massachusetts from the Fund For Excellence In Mental Health, to adapt Open Dialogue for use in this country, (it originated in Finland.) This seems to be in the pipeline.
Bravo, Frank. I couldn’t have put it better myself.
I find the trailer of this movie, and accompanying interview with the director, to be naive and very sad.
It is obvious from Lise Zumwalt’s tone of voice as she describes her movie, that she’s oblivious to the true depth and dimensionality of the suffering of patients. She knows nothing about the scandalous, conspiratorial, and intended effect of stigma against patients, and the monolithic effect this has on their lives. And yet it is this same depth and dimensionality which is subliminally driving today’s manifest destiny of mental health care. Stigma is inherent to the medical model of mental illness.
I’ve always been delighted by the exceedingly high rate of non-compliance with treatment by patients. (90% is it?) And like all other antipsychiatry activists, I know for a fact this has not one thing to do with a lack of insight into their, “sicknesses.” Rather, it is due to a universally-shared experience of patienthood, which says that being a mental patient means you will have no substantive life whatsoever beyond the point you foolishly enter the mental health system. It is a very sad state of affairs that patients have no other recourse to exact justice in their own behalves other than to eschew the drugs, sleep in the streets, and populate the jails. This is the bottom line which is driving behavioral system evolution.
Yes, there are, “advocates,” and family members who will tell you that court-ordered outpatient treatment will solve the problem of willful non-compliance with treatment amongst patients. It won’t. The criterion for eligibility for outpatient forced treatment is so restrictive that only a miniscule segment of the overall patient population is subject to it. This then leaves the vast majority of patients with the continued prerogative of homelessness, jail, and obstruction.
“Why not then broaden the criterion for eligibility for forced treatment,” some bright advocates say? Purportedly then all patients could be compelled to undergo treatment against their will.
I don’t believe the U.S. Constitution will ever permit this.
I believe there’s a website called, TheraDate.com. I once visited it just to see what it looked like. Somewhere or another I read/heard that it was started by a group of psychologists, for the benefit of patients. Enjoy.
Yes, and this includes the burgeoning, “peer counseling,” industry, too.
I forgot to mention: I am listed in Facebook under my full name, Philip Kumin.
Oldhead: Take a look at my Facebook page. Could you send me an email address for yourself? Mine is: [email protected]
I confess. I was a latecomer to the mental patients’ Movement. I never attended any of the International Conferences for Human Rights and Against Psychiatric Oppression. I was not present in Toronto in 1982. Ironically in 1972, I remember seeing something on TV about a nascent movement of mental patients. This was in the midst of my second of four hospitalizations I had back then. The 1985 Alternatives Conference was only the first nationwide gathering of mental patients I had ever attended.
Reviewer Richard J. Brzostek’s criticism of the title of my self-published autobiography, EX-INMATE IN EXILE, is true. I was never kept against my will in any of the hospitalizations I had. As a result, I should not have referred to myself as a former, “inmate.” But I did this anyway because it had a nice ring to it.
And I must say, ever since meeting most of the founding activists of the Movement in 1985, I have been highly enamored of them. Ted Chabasinski, Judi Chamberlin, Leonard Frank, Howie the Harp, Rae Unzicker, George Ebert, Don Weitz, and Sally Zinman have all been idols of mine for almost thirty years now. They are heroes. Each year now at the Alternatives Conferences, Sally Zinman puts on a workshop in which she articulates the history of the Movement for newcomers. Her work is critical, as there must be continuity from one generation of patients to the next.
I, too, abhor verbiage such as, “recovery,” “wellness,” “consumers,” or, “mental illness.” To me, these words are nothing but N.A.M.I. puke, sadly coopted by today’s, “consumer,” Movement, for some reason or other. I do not use language such as that in any of my writings.