demand informed consent when prescribing medications
this is part 3 of my comments... starting below with "NOTE THAT THE PRESIDENT'S NEW FREEDOM COMMISSION..." then "Incredibly..." and now this:
Deeper than this scandal, is something that is really at the core of this, and that is something called 'sanism.' You've heard of racism, sexism. Well, 'sanism' claims that those with a psychiatric diagnosis are somehow fundamentally and extremely different from the rest of humanity.
But what I've learned in my 34 years as a community organizer in this field, that the reality is that the general public and people with 'serious' psychiatric diagnoses have a great deal in common. For one example, consider scientific evidence emerging now about the climate crisis, and other environmental disasters. Let the following fact sink it: What is generally called 'normal' -- that is, people without serious psychiatric diagnoses -- are behind the ripping and shredding of our precious planet's ecosystem. Did I get that right? That 'normal' is actually currently wrecking our planet's environment?
If we really let that sink into our hearts, if we really consider the implications... it may become more clear why our society has trouble talking about the impact of long-term high-dosage neuroleptics. Because then those in our society known as 'normal' would need to look in a mirror... and mirror that says we are doing terrible, terrible damage to some very vulnerable people, sometimes involuntarily, at great expense to taxpayers.
I know generally no on intends this. Now, neuroleptics are being given to 18 month olds who I'm sure are loved by their families. The federal government funded testing of giving neuroleptics to vets for PTSD, and I'm sure people support vets. So what is called 'normal' is giving substances to those who they consider some of the most precious and beloved in our society...
Truly, those who are generally considered 'normal' ought to run, not walk, and learn from our members who have gone through the fire of extreme and overwhelming mental and emotional distress... and take notes about what it means to find recovery, what it means to find resilience, what it means to come through the fire and help others. Because I tell you, all of humanity is slowly becoming aware that they are more or less in the same boat as our members who have been diagnosed with extreme problems. TO BE HUMAN, throughout time, is to have a struggle with who we are, and how we relate to the planet, and each other.
My little essay above could be easily dismissed as 'crazy', couldn't it. Yet, it's backed up medical evidence... and history. And the response to the accusation really is to say if any of us are crazy... then to be human itself is to be crazy.... So before those called normal pay billions of more dollars to coercively drug thousands of more citizens with drugs that can shrink the frontal lobes... maybe it's time to listen to those on the 'sharp end of the needle' about what it really takes to find some mental and emotional healing.
Martin Luther King said it best when he said the salvation of the world lies in the hands of the creatively maladjusted. (You can google that phrase -- he said this over and over for 10 years.) Martin Luther King repeatedly called for the creation of an International Association for the Advancement of Creative Maladjustment, google that, he did indeed.
You've heard of gay pride, but this is mad pride, part of a social change movement that is now 40 years old and international... of people who have been ignored, drugged, labeled, locked up. But our many of our people survived, they survived the forced drugging, they survived the solitary confinement, they survived the homelessness... and many not only survived, but they are giving back, they are forgiving the unforgivable, they are creatively maladjusted. Some of the most powerful psychiatric drugs in history, electroshock, restraints, none of this could stop many of our people, because -- if truth be told -- they are human beings, and ultimately human beings cannot be stopped by oppression, they persevere, they find ways to resist, they reflect the true deep human spirit, that is sometimes lost by those who mistakenly consider themselves 'normal.'
Thanks for listening,
David W. Oaks, Director, MindFreedom International
P.S. And what ever was done about that goal of the President's New Freedom Commission to look into long-term impact of psychiatric drugs like neuroleptics? MindFreedom representatives helped get it into the plan... So what was done. And of course, why isn't it mentioned in any of SAMHSA's current plans? Best mention it... rehabilitation of those horribly traumatized by such institutional violence will take everyone's support.
continuing my comment:
Incredibly, in those medical studies you'll see that one of the structural changes that can happen from long-term high-dosage neuroleptics is measurable and significant shrinkage of the FRONTAL LOBES. These are the same lobes that, according to neuroscientists, help make us human, and help distinguish us from other primates. These are the same frontal lobes targeted during the lobotomy of old (and still in psychosurgery today).
Again, this is not a wild accusation. There are plenty of studies showing significant changes occur when these powerful drugs are given, including structural changes. It's no secret inside the medical community, though some will play a few word games (denying 'damage') when asked.
As an activist for 34 years in the mental health field, in terms of 'serious' psychiatric diagnoses, this point I'm making is like the 'climate crisis' of mental health. One can see from books such as ROBERT WHITAKER's Anatomy of an Epidemic, that the numbers are coming in about our society's experiment with a massive reliance on over-drugging. And the numbers show that often low drug or no-drug or temporary drug alternatives are doing far better in terms of sustainable long-term full recovery. Plus, lots of lawsuits are showing that claims by the drug companies about the neuroleptics, including newer neuroleptics, are turning out to be false. (Note that studies are now showing even the tardive dyskinesia rates -- which can mean permanent twitching -- for the newer atypicals are 'more similar' to the rates for older neuroleptics then people have been told since the introduction of newer neuroleptics.)
In sum, we have an enormous scandal here. One of the big budget busters in all of health care is the enormous expense of taxpayers to fund the super-powerful neuroleptics, one of the most profitable prescription drugs in all of medical history. These drugs are involved in one of the biggest controversies of medicine, their use for involuntary psychiatry. When psychiatry talks about involuntary care, it often comes down to involuntary neuroleptics.
So here are we the taxpayer funding billions of dollars for neuroleptics, based on false claims of how great they are. These drugs are often given involuntarily. And yet, the fact that long-term use can cause measurable frontal lobe shrinkage is not discussed publicly, and can mainly only be found in the medical literature?
Note that the PRESIDENT'S NEW FREEDOM COMMISSION a few years back, had a recommendation to look at the long-term impact of taking prescribed psychiatric medication. An example of what SAMHSA has NOT done to follow this core recommendation is the following:
Current medical evidence is now showing that long-term high-dosage neuroleptics (antipsychotics) can cause such a significant structural change to the brain, that these changes are visible during brain scans and autopsy. Before someone attributes all these changes to an underlying mental and emotional problem, please note that many of these changes can easily be replicated in animal studies.
Please note we are pro-choice about an individual's private healthcare decision to take prescribed medication.
However, they have right to full information. The public has a right to know. Decision-makers have a right to know. Families have a right to know.
However, incredibly, information about this extreme hazard of long-term neuroleptics tends to be only available in the medical literature, where there are many studies. To see a few simply google the words:
neuroleptic brain damage
You'll find MindFreedom's folder with some of the studies, though more have happened over the years.