If you’re confused about Murphy’s law (H.R. 2646), and wondering why so many advocates with lived experience think it is such a bad idea, here is the basic concept:
Less than two months ago, the New York Times published an article entitled “Antidepressant Paxil Is Unsafe for Teenagers, New Analysis Says” (9/16/15). Only 2 weeks ago, the New York Times reported a ‘landmark’ study announcing ‘Therapy Found to Ease Schizophrenia’ (B. Carey 10/20/15).
None of this is news to those of us with lived experience. We have known for years that the medical treatments (chemicals, ECT, TMS, psychosurgery) rarely work as well as prescribers and Pharmaceutical companies insist they do (pretense of research notwithstanding). We have also known for years that talking (especially the mutually respectful human-rights-informed kind of talking that is the purview of peer support) can make all the difference — even across seemingly unfathomable realities.
It therefore is more than a little ironic — as well as quite painful — that it has taken this long for the top minds of science to catch up with those of us who feel like we lost our minds to this same ‘science.’ The reality for many of us is that our lives and well-being have been profoundly affected – not only by bad science, but also by the extremely good marketing of pharmaceutical companies and prescribers. Every day, those of us on the ‘wrong’ side of the locks are told by well-meaning mental health professionals that we must be honest and ‘face the facts’ if we ever hope to regain a place in the human community. Yet, when we are honest – and honestly try to report our experience that treatment as usual is doing us more harm than good — all too often we are ignored, dismissed and cautioned that this is our ‘illness’ and ‘denial.’
The result is a mental health system that many of us do not trust to operate in good faith. The public may think we are irrational, in denial, or that we have lost touch with reality. But in our eyes this is an equally valid critique of the current provider system. It is also a valid – and painful – critique of many of our families, neighbors, teachers, employers and communities, which all too often uncritically accept everything that the professionals say.
The Murphy bills highlight this discrepancy and add fuel to the fire. For those of us who have been labeled by medical model psychiatry, it is frightening to watch the wolf of social prejudice being cloaked in the guise of mental health reform. The evidence supporting the connection between victimization, violation and subsequent mental health diagnosis is undeniable. Up to 90% of us in the public mental health system are trauma survivors. Yet, in the most violent nation in the world, we watch committee rooms full of elected officials with no gumption for gun control listen spellbound to an endless parade of supposed experts who ‘know’ that ‘the mentally ill’ must ‘face facts’ and ‘take medicine’ in order to protect the public at large. No matter what our life stories, no matter what we have endured, these experts always insist that our problem is a ‘brain’ problem that their drugs will fix. Moreover, no matter how incapacitated or uncomfortable these chemicals make us, these same experts are always certain that the solution is to take more of them.
As if it couldn’t get any worse: there are not one, but two Murphy bills in Congress. Both of them propose to elevate the authority of institutional psychiatry to a level never before seen in modern society. In effect, this creates a situation where:
- The same people who invented the labels get paid a) to assign them, and b) to decide what individuals have to do in order to manage or get rid of them.
- The same companies that use psychiatry to promote their products (e.g, drugs, ECT, TMS, etc) fund the same research and research programs that say how great their products are.
This is fiscally and socially irresponsible. Is is also tantamount to corporate welfare. It is like making a private business the exclusive monitor-reporter of how effective and safe its products are, and how much its customers love or benefit from them, and then also setting up a reimbursement system where every time the business gives itself a rave review, the government gives it more funding — from taxpayer dollars. In sum, the Murphy Bills are a prescription for fraud and self-promotion. Even worse, this is at the expense of real people and real families, with real distress and real crises, who need — and deserve — real support.
To make this a bit more concrete, a friend reported that the public agency where he receives care recently billed Medicare $120 for a routine visit with his psychiatrist. The visit basically amounted to the psychiatrist meeting with him for 5 minutes, asking a few rudimentary questions, and pushing a button to print a repeat prescription for the multiple drugs he is taking at the psychiatrist’s direction. These are drugs that he worries are damaging his health and would like help to withdraw from. Yet, every time he asks his psychiatrist about this he gets responses like ‘you’re not ready yet’ or ‘let’s discuss this next month’ or ‘we can go down on this drug, but you will have to go up on another one.’ The unwillingness to work with him on his simple, straight-forward request increases his distrust of professionals and the service system overall, creating added stress and doing nothing for his mental health.
From my conversations with many in consumer-survivor advocacy groups, I know that my friend’s situation is fairly common. Huge numbers of us want something different than what the medical model is offering. Yet, there are few options.
The omission extends to even the most obvious option of offering ‘care’ that actually looks and feels like someone ‘caring.’ This has far more to do with getting a meaningful human response than with ‘science,’ ‘medicine,’ doctors, ambulances, ERs or health techs. Mostly, it just takes time and effort from someone who is willing to make time and effort. What most of us want is basic human courtesy – not rocket science. Things like a sincere attempt to:
- Understand our values and point of view – even if you don’t share them, even if our reality is not your reality (if Republicans and Democrats can talk with each other, so can earthlings and martians…)
- Help us to address the things we see as the problem.
In other words, pretty much what any human being in a difficult situation would want from others of conscience and good will. In a truly free market, this is the kind of ‘healthcare’ we would buy or want paid for on our behalf.
Another kind of thing that would interest many of us is practical hands-on support with the very real problems of living that so many of us are facing. The vast majority of us are far less interested in our so-called ‘chemical imbalances,’ and far more interested in managing the stress of ongoing real-life concerns like:
- material and emotional safety
- social exclusion
- prejudice and discrimination.
Sadly, the virtual stranglehold of Pharma and the medical model on public mental health funding has largely prevented Americans from exploring this direction of support. To us, however, it seems a far more promising avenue than the treatment as usual we have experienced. With the same investment of public funds, people in distress could be buying goods and services that tangibly improve our subjective experience and quality of living. This includes things like:
- The stable housing necessary to feel safe and reasonably comfortable
- The transportation, internet and phone services needed to access employment opportunities, community services and natural supports
- The healthy food necessary to nourish minds and bodies;
- A decent bed to sleep on
- Physical and wellness supports like gym memberships, body work, artistic and creative outlets,
- Personal assistance for daily tasks like housekeeping, personal hygiene, or meal preparation when these become overwhelming
- Education and training to improve our options
To put this another way, a single day of inpatient care typically runs between $300 and $1000 per day. Outpatient care with drugs can easily run that much a month. What family’s wellness wouldn’t improve if they had access to that kind of financial support? Families in poverty — a high risk for diagnosis — could afford basic life necessities, thereby alleviating a key threat to biopsychosocial well being. Even better, parents could afford time off from work to be with kids who need them. They could even occasionally afford outside care to get a needed break for themselves.
In the final analysis, there is a lot of lip service being paid by Murphy supporters to the idea of comprehensive mental health reform. If that is really the honest intent, however, the time is long overdue for real reform. And to do that, providers, researchers, politicians and the general public need to face these hard facts:
- The medical model system of mental healthcare in the United States is seriously broken.
- It fails to materially improve the lives of huge numbers of people for whom it bills for services.
- It leaves far too many of us worse instead of better off when American families turn to it in their hours of greatest need.
Moreover, to materially improve, this system cannot rely on itself — or its own self-evaluation. We have had over a century of this already. A lot of us have attended those meetings. They’re no more productive than watching a bunch of drunks sit around the bar blaming the rest of the world for not recovering. (Here’s a tip: It’s your illness speaking!)
Legitimate science requires honest inquiry. Honest inquiry means listening to critics and taking their criticism seriously. It also means listening to people who are in a position to know what is really going on. What is really going on has nothing to do with the opinions of providers and marketers. These are the people who sell the products. They get to go home at night whether or not the products work as represented.
To know what is really going on, you have to talk with the service recipients/ survivors/ ex-patients. We are the people who have actually experienced what the products deliver. We can tell you what really worked and what didn’t. But you have to really want to know. The provider system usually doesn’t. It is far too invested in what it is already doing — and in what insurers and governments will pay for — to give much credence to what its actual service recipients have to say.
When it gets right down to it, what we have to say is pretty simple: Some people like the products of the current system, and report benefitting from them. However, huge numbers of us don’t. We see medical model products and services — at the very least — as less helpful than they should be, given the huge investment of time, money, and faith that they receive. After trillions of dollars of research there still is no proof of the ‘chemical imbalance’ theory. The former director of the NIMH, Thomas Insel, literally threw out the DSM and told medical psychiatry to start over. Said Insel, in his famous admission of the DSM’s “lack of validity”: “[W]e cannot design a system based on biomarkers or cognitive performance because we lack the data.”
Beyond this, the espoused ethic of ‘do no harm’ notwithstanding, huge numbers of people report that the current system has outright injured, traumatized and debilitated them. For those of us in this group, we are offended that Congress is seriously thinking about mandating citizens into a system we have experienced as harmful, unethical and very, very broken. We are outraged that elected representatives have advanced a bill that would silence dissent, defund alternatives, and prevent advocates from assisting those who want to hold it accountable.
There are literally hundreds of groups — online, telephone, face-to-face — representing thousands of people, who are upset with and seeking alternatives to conventional mental health services. In these groups, every day, new people show up with fresh accounts of iatrogenic harm. Together we bear witness to the damage, support each other (like the system should), and work to recover the lives that were stolen from us – ostensibly in the name of treatment but more likely to profit organizations, corporations and guild interests.
In this regard, we are furious to see our Government not only abdicate its oversight role (it has done that for years), but actually delegate it away so irresponsibly. Families who enter the mental health system are at their most vulnerable, overwhelmed and desperate. As a rule they have few resources and extremely high needs. In these circumstances, the Government should be taking an active role in scrutinizing providers and the services and products they promote. It should be protecting families from discrimination, misrepresentation, coercion and exploitation. It should be validating the experiences of service recipients, learning from them, and using this to educate and improve outcomes for those to follow. It should be actively gathering and investigating consumer reports that don’t match the study data. It should be mandating a quality of services that truly free people in a truly free market would freely and meaningfully choose.
But that is not how things work today. Mad people know this and have been voicing this truth for decades.
But nothing will change as long as people like you — families, friends, neighbors, educators, employers, public servants — continue (like the provider system) to not listen. The fact that you ignore us doesn’t make our experiences or what we are reporting any less real. There won’t be any fewer dead teens, needlessly drugged ‘schizophrenics,’ or — stay tuned for the next media revelation — electro-shocked grandmothers. By maintaining, or with the Murphy bill augmenting, you will not be bringing anyone into closer contact with reality. To the contrary, you will experience the very essence of insanity itself. This perhaps is the great leveler, though the implications are awful. It means that we will all be out of touch with factual reality together, and none of us will have the opportunity to make a difference that matters.
You won’t find a better description of madness than that. Not in medical books. Not in the DSM. Yet, it is the modus operandi of our current mental health system.
And now we are considering making this madness federal law. But unlike the powers behind those perspectives, as people on the receiving end, we don’t get to throw away the Bill of Rights. We don’t get to lock you up, clamp on the restraints or drug away your free will. We simply have our opinions about what is true — and you get to have yours too. That’s how it should work — for all of us— in a free society.
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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.