Allen Frances recently wrote a Huffington Post blog that made some good points about advocate compromise, but used some very insulting language and therefore made an inaccurate assessment of the problem. He is asking the mental health advocates to end a “civil war.” I am making the point instead, that it’s not a civil war. Dr. Frances is trying to get two ends of the bell curve together instead of addressing issues in the middle of the bell curve. In the middle, it’s people who know the science trying to educate people who don’t know the science.
Dr. Frances, like many people, is confused from the noise at the extremes from people that are flat-out lying about the science. Unfortunately, the people lying about the science have been in the ears and pocketbooks of several politicians lately, including, Dr. Murphy of HR 3717.
Here is the graphic. The four players are the forced med advocates (a tiny group), the disease model advocates (a big group), the recovery model advocates (a big group), and the anti med religions (a tiny group).
Dr. Frances says:
“There will never be any compromise acceptable to the die-hard defenders of psychiatry or to its most fanatic critics. Some inflexible psychiatrists are blind biological reductionists who assume that genes are destiny and that there is a pill for every problem.”
We really appreciate Dr. Frances’ work to challenge the DSM-5 and bring awareness to some of the medical harm in the mental health community. We appreciate Dr. Frances’ efforts to build bridges and mend fences and link communities. However, he isn’t really aware of our community’s viewpoint and challenges.
Here is a better and more nuanced look at the 5 types of mental health advocates. Dr. Frances is confusing a religious cult, which is truly against all medication, with 96% of all other advocates. Most of us just want to balance harm vs. benefit. It is true that people at the very far ends of the bell curve won’t talk. But I suspect about 96% of advocates are the middle of the bell curve on their awareness of harms and benefits. And we all do talk already. It’s only the 2% on either far end that refuses to compromise.
Dr Frances says:
“Some inflexible anti-psychiatrists are blind ideologues who see only the limits and harms of mental-health treatment, not its necessity or any of its benefits.”
Very few people in our community are anti-medication. We are pro fully-informed choice. If psychiatrists would do the work to learn the academic literature in their own field, they could give better informed choices so our advocates wouldn’t have to do work pro-bono that psychiatrists are already paid to do. So we might seem like “anti-psychiatrists,” but we are just promoting medical harm awareness.
“Anti-psychiatry” is like the N-word in our community. That’s a word that Dr. Frances’ community uses to feel good about ignoring our input, when there are at least 10 good reasons that our community knows more science. Mainly because it’s life and death for us, and we have more time on our hands and less risk to learn and talk publicly about new stuff.
Dr. Frances says;
“I have spent a good deal of frustrating time trying to open the minds of extremists at both ends — rarely making much headway.”
That is because the extremists on one end, the forced-med people, are not scientists; they are propaganda artists. And Dr. Frances confuses mainstream advocates on the other end with extremists. Mostly because we are angry at watching our brothers and sisters die, so our language is strong. So I am making that point that if Dr. Frances can’t tell the difference between medical-harm aware advocates and anti-medication religions, then he has not yet talked very deeply to our community.
For instance, here is an open letter to Allen Frances asking him to stop phrasing everything as an illness. The Hearing Voices community says that over 75% of people who could get a schizophrenia label recover spontaneously without any kind of treatment at all.
This is similar to the addiction community where 75% of people who could get an addiction label recover without any kind of treatment at all. In both communities, the long-term outcomes literature shows that people who do get “treatment” actually do worse.
For schizophrenia, the very short version is that antipsychotics actually cause psychosis by increasing the number of dopamine receptors in the supersensitive state. Now, this is in the aggregrate, in the long term. So some people will like and benefit from their treatment. But they are statistical outliers, not the foundation upon which public policy should be made.
Dr. Frances says;
“Fortunately, though, there are many reasonable people in both camps who may differ markedly in their overall assessment of psychiatry but still can agree that it is certainly not all good or all bad. With open-mindedness as a starting point, common ground can usually be found; seemingly divergent abstract opinions are not so divergent when you discuss how to deal with practical problems.”
The Hearing Voices blog linked to above already dealt with that “practical” list of suggestions from Allen Frances that wasn’t so practical after all. It turns out that the disease model of emotional distress has a lot of limitations and dangers than even Dr. Frances is not aware of yet.
Dr. Frances says;
“And finding common ground has never been more important. We simply can’t afford a civil war among the various advocates of the mentally ill at a time when strong and united advocacy is so desperately needed.
“Mental-health services in the U.S. are a failed mess: underfunded, disorganized, inaccessible, misallocated, dispirited, and driven by commercial interest. The current nonsystem is a shameful disgrace that won’t change unless the various voices who care about the mentally ill can achieve greater harmony.”
Well, the thing is, most emotional distress is not an illness. Calling it an illness is not a great way to help most people. Therein lies the difference. It’s not a civil war, it’s one view of science vs. another view of science.
In the middle of the advocate bell curve are medical-harm aware advocates that see that sometimes emotional distress is caused by life experiences. It could be past trauma experiences, lack of social connection, poor job fit or career goals, grief, loss of hope, spiritual emergency, or drug use, poor nutrition, lack of sleep, lack of exercise, or traumatic brain injury. Screening out this list of things is actually the ONE thing that all type of advocates agree on — but it rarely, if ever, happens in real life.
Dr. Frances says;
“Here is the cruel paradox: Those who need help can’t get it. We have half a million severely ill patients in prison for nuisance crimes that easily could have been avoided had they received adequate treatment and housing. Sleeping on a stoop, stealing a Coke, or shouting on a street can get a person arrested. Once arrested, not being able to make bail and/or not fitting in well with jail routine leads to prolonged incarceration and, too frequently, crazy-making solitary confinement. The U.S. today is probably the worst place and worst time ever to suffer from a severe mental illness.
“Meanwhile, those who don’t need psychiatric medicine get far too much: We spend $50 billion a year on often-unnecessary and potentially dangerous pills peddled by Big Pharma drug pushers, prescribed by careless doctors, and sought by patients brainwashed by advertising. There are now more deaths in the U.S. from drug overdoses than from car accidents, and most of these come from prescription pills, not street drugs.”
Agreed. The problem is well stated.
Dr. Frances says;
“The mess is deeply entrenched because
- There are few and fairly powerless advocates for the most disadvantaged
- The commercial interests are rich and powerful, control the airwaves and the politicians, and profit from the status quo; and
- The mental-health community is riven by a longstanding civil war that distracts from a unified advocacy for the severely ill.
The first two factors won’t change easily. Leverage in this David vs. Goliath struggle is possible only if we can find a middle ground for unified advocacy.”
This analysis is flawed because
- There are many medical-harm aware advocates, with much power, but Dr. Frances is confused between our mainstream of advocate community and the people at the ends of the extremes.
- The commercial interests pretty much just lie about the science and the status quo basically lets them, despite the fact that every single psych med category has now been busted for illegal marketing, and
- It’s not a longstanding civil war, it’s a propaganda battle. There are people who just basically make stuff up, and right now they have a lot of money and they are very loud. But the mainstream of advocates are people who know the science trying to educate people who don’t know the science. When Dr. Frances calls our mainstream community “anti-psychiatry,” he is ignoring a vast pool of science that shows very serious concerns with the current paradigm of mental health care.
Dr. Frances says;
“I think reasonable people can readily agree on four fairly obvious common goals:
- We need to work for the freedom of those who have been inappropriately imprisoned.
- We need to provide adequate housing to reduce the risks and indignities of homelessness.
- We need to provide medication for those who really need it and avoid medicating those who don’t.
- We need to provide adequate and easily accessible psychosocial support and treatment in the community.
“The arguments occur over the extent to which medication and coercion are necessary, and over who should get how much funding to provide what type of psychosocial support to which people.
“We can all agree that too much medicine is being prescribed by the wrong people to the wrong people and for the wrong indications. Eighty percent of all psychiatric medicine is prescribed by primary-care doctors after very brief visits that are primed for overprescribing by misleading drug-company advertising. Many psychiatrists also tend to err by being too quick to write prescriptions. Anti-psychiatrists err in the other direction, thinking that because they have personally done better without meds, no one needs them.”
I (personally) agree with the above, but why confuse the mainstream advocates with extremists at either end? This shows a real lack of awareness of the various advocacy communities.
Dr. Frances says;
“I think reasonable people can agree that we need to reeducate doctors and the public that medications have harms, not just benefits, and should be reserved only for narrow indications when they are really necessary. It is ludicrous that 20 percent of our population takes a psychoactive pill every day, and it is equally ludicrous that anyone should be sent to jail for symptoms that would have responded to medication if the waiting time for an appointment had been one day, not two months.”
Dr. Frances says;
“Coercion is an even more contentious topic, but one that also has a common-sense common ground. When, more than 50 years ago, Tom Szasz began to fight for patient empowerment, freedom, and dignity, the main threat to these was a snake-pit state hospital system that warehoused more than 600,000 patients, usually involuntarily and often inappropriately. That system no longer exists. There are now only about 65,000 psychiatric beds in the entire country, and the problem is finding a way into the hospital, not finding a way out.
“Anti-psychiatrists are fighting the last war. Psychiatric coercion has become largely a paper tiger: rare, short-term, and usually a well-meaning attempt to help the person avoid the real modern-day coercive threat of imprisonment. Decriminalizing mental illness and deprisoning the mentally ill should be an appealing common banner. And when you discuss specific situations, there is much more common-sense, common-ground agreement about when psychiatric coercion makes sense than when you discuss this hot-button issue in the abstract.
“Finally, there is the inevitable competition for scarce resources that causes conflict between professionally run mental-health programs and those based on recovery. The fight for slices of the pie gets particularly fierce when the pie is far too small to start with and is forever shrinking.”
Dr. Frances has missed the point. We are not fighting to get a piece of the mental health system pie, we are fighting for good science, for the application of the best and most effective treatment methods that would help the most people in the long term for the least amount of money. We are fighting for complete recovery. We are fighting to promote a way out of disability, a way to free our people from the disability industrial complex. We are freedom fighters – we have found a good life beyond the slavery of medications that cause more harm than good, from diagnoses that cause more harm than good.
We have found our way to the promised land of recovery and now we want to bring our family and friends into the new world of life beyond labels. What worked for us is not unique – the literature backs up that there is no difference between people who recover and those who don’t except that someone believed in us. We know we can hold the flame for other people, and we do.
We are fighting for the very lives of our brothers and sisters. We are fighting for our lives, still, many of us. Because this battle is so lopsided against us, we fight for ourselves every day, too. So we ask Dr. Frances to listen again, keep listening until he can actually hear us through our rage and our pain and our despair and not being heard again and again when we know the cure.
We know how to help people that experience emotional distress. We know how to solve the problem. Our battle is that people don’t listen to our solution.
Our battle is not to get part of the pie. We want to make the whole problem go away, and we know how.
Dr. Frances says;
“The common ground here is recognition of the fact that one size does not fit all. We need all sorts of different psychosocial support systems, because different people have different needs and tastes. We should be joining together to grow a bigger pie, not fighting for slightly bigger slices of a shrinking one.
“Rome is burning, and no one seems to be doing much about it. The ivory-tower institutions (like the professional associations and the National Institute of Mental Health) and the more grassroots organizations need to put aside differences and focus common advocacy on two goals that all can share: helping our most disadvantaged regain freedom and dignity, and taming the rampant and careless overuse of medication.”
These last two paragraphs are true, too. We are glad Dr. Frances came to our film festival to hear our people. But, next time, maybe he can hear beyond the surface of anger and pain, to hear into our knowledge of data and science and recovery.
Maybe next time Dr. Frances wants to build a bridge between communities, he can ask for our help to make an assessment of the actual problem instead of calling our community the problem. Because we know that our community actually holds the solution. So that way, if Mr. Frances keeps talking to us, then maybe we could solve the problem together.