Involuntary Transformation: Advocacy, Ethics and Journalism: A MadMother's Perspective

"Of all tyrannies, a tyranny exercised for the good of its victims may be the most oppressive.

It may be better to live under robber barons than under omnipotent moral busybodies.

The robber baron's cruelty may sometimes sleep, his cupidity may at some point be satiated;

but those who torment us for our own good will torment us without end,

for they do so with the approval of their own conscience."

C.S. Lewis

Just day before yesterday I was talking about how this article featuring a mother and son disturbed me. The mother's insistence that her son tell the story of his arrest now, when "for years," both mother son, "have resisted talking about his arrest. Now she decides it is time: time to talk, to learn, to understand." (emphasis mine) My initial thought was how self-serving and disrespectful of her son's wishes the mother's insistence that her son share his personal story is. How are his best interests served if/when a decision is made for him? Particularly, if a decision is made without respecting his right to privacy and/or contrary to his stated wishes and obvious reticence?

My intent when I started to write a blog post, was to write a post about some changes that are being made to Washington's Medicaid program. I came across this story again, along with the announcement that the writer was given an Ethics in Journalism award for the article. I wondered how in the hell is that even possible?!

A grown man's mother insists it is now time to tell HIS story. In his mid-fifties, his stated wishes are minimized, if not ignored. Devastating as the impact of her son's criminal acts and his subsequent institutionalization were to his mother; the story is the son's, not his "advocate" mother's! It is a story that should only be told if and when he chooses; not to highlight Eleanor Owen's "advocacy!"

I am a mother whose son was given the diagnosis of schizophrenia. To me, this is also the story of a grown man in his fifties who is in effect being treated as if he has no ability to determine for himself whether or not to share his own personal and painful story. It is more than a little sad that a grown man's autonomy is denied so that his own mother can utilize her son's story as an object lesson on "advocacy for the mentally ill." It is the antithesis of advocacy.

To me, the story illustrates how those with a psychiatric diagnosis are so effectively de-voiced by people whose intent is to "advocate" for the best interests of people with a psychiatric diagnosis. There is an implied assumption that the expressed opinions and wishes of the people diagnosed as "mentally ill" are less important or irrelevant; thus they can be minimized, if not ignored altogether. Many adults with a psychiatric diagnosis have their stated wishes ignored as a matter of course. Incredibly, many advocates see nothing wrong with depriving people whom they claim to be advocating for of their voice. If the tables were turned, most mental health advocates would feel disrespected; invalidated. John Owen is a man in his mid-fifties who has to do what Mom says...

He has, I will assume, been on neuroleptics for three decades--these drugs which commonly cause cognitive impairment, i.e. brain damage. In reality, this is the story of a potentially brain-damaged man who is manipulated and coerced by his mother, an advocate "for the mentally ill," in order to teach a lesson in "advocacy."

The overall gist of article, is the story of how wonderful his mother is. This is an article to celebrate the mother's birthday and her advocacy. It is not a story about mental illness per se; or even a story about the people labeled with psychiatric diagnoses. The one person identified as having a "mental illness" is treated disrespectfully by his own advocate/mother. The irony is simply stunning.

That said, it's difficult to find a news story highlighting mental health issues which positively portrays people labeled with mental illness for an Ethics in Journalism award. None of the three stories which were finalists, conform to the standards which are outlined in the Society of Professional Journalism's Ethics in Journalism. e.g. an unbiased reporting of facts---all three articles which were finalists for this award actually were written with biased opinions about mental illness of interviewees used as if they are statements of fact. Specifically: what is and is not known about the etiology of mental illnesses and the safety and effectiveness of the drugs used to treat them. The lack of journalism ethics is the standard in this country; with rare exception.

In my personal opinion, NAMI's brand of advocacy is not helping, so much as it is misinforming, further stigmatizing, and ultimately hurting those who have a psychiatric diagnosis. This brand of advocacy does not speak for me or my son; indeed, this type of advocacy doesn't even acknowledge that individuals like my son, and families like ours, even exist! NAMI advocates for people who choose to believe that opinions are FACTS.

NAMI advocates for forced treatment under Court Order. Human Rights are for everybody, and in a just society, only facts should be admissible as evidence in Courts of Law. However, in Civil Commitment proceedings, gossip, innuendo, and speculation will suffice for people who are being adjudicated as mentally ill, and in need of treatment. Individuals are Court Ordered either to inpatient or outpatient forced drugging or electric shock treatment regimens; regardless of the effects upon the individual, or the basis in fact for the petition which was used to obtain the Court Order. These Court Orders are obtained in Court proceedings without Proper Notice being given; Proof of Service being filed; the Rules of Evidence being followed; Standard Court Procedures being used; and without Effective Assistance of Counsel being provided to the individuals being adjudicated. These Civil Commitments are contrary to the very foundation on which Our Justice System is built; it makes a mockery of the Courts. Thanks to NAMI advocacy, Individual Rights which are Human Rights supposedly protected by the 5th, the 8th and the 14th Amendments of the United States Constitution, are denied to those who have a psychiatric diagnosis, as a matter of course, and as a matter of fact.

In my son's case last summer, I was, (and still am!) outraged that mental health professionals were allowed to submit perjured and forged testimony; one even claimed to be petitioning the Court because I wanted her to! These people violated my son's dignity, his Human Rights and pissed me the hell off! My son's Rights to Substantive and Procedural Due Process of Law were violated; and these "mental health pseudo-professionals" were aided and abetted in committing these FELONY CRIMES by a Deputy Prosecutor and a Defense Attorney assigned to represent my son. I know now, beyond a shadow of any doubt, after almost twenty years of advocating for my son, that his Human Rights are in effect, NON EXISTENT--and have been ever since he was given a psychiatric diagnosis after being the victim of a violent crime. He is apparently no longer considered to be a human being, with Human Rights by the State of Washington.

Thanks to NAMI's hero advocate, toasted in The Seattle Times, using the platform of NAMI, and the guidance of NAMI's "research" arm, the Treatment Advocacy Center, this advocate and other's in NAMI has made sure that Washington State has ONLY the newest, most expensive, neuroleptic drugs on the it's State Medicaid list of 'approved' drugs to be used as First Line treatment for schizophrenia. Although the drugs are not any safer or more efficacious, they are a whole heck of a lot more expensive. The newer "Atypical antipsychotics," are neuroleptic drugs that were developed to treat schizophrenia, but are prescribed "off-label" and have become the most prescribed psychotropic drugs---in spite of their causing a host of iatrogenic illnesses. Who benefits most from having these newer drugs being 'preferred'? NAMI's chief benefactors; the drug companies.

Washington State also has some of the harshest laws in the Nation thanks to NAMI's beneficent advocacy "for the mentally ill"; the laws are stripping individuals of their dignity, their Human Rights, their Liberty and potentially their life, in order to enforce "treatment compliance," using these expensive drugs. Even though only a small percentage of people who are diagnosed with schizophrenia are known to substantially benefit from taking the teratogenic drugs. 26% of adults with a diagnosis of schizophrenia actually achieve enough of a symptom reduction, or 'benefit' to offset the serious, well known risks of iatrogenic illness, disability and death from "antipsychotic" drugs.

Thanks to the hero advocates of NAMI, taxpayers here in Washington State are continuing to be defrauded by the drug companies, through Medicaid, Medicare and Tri-care and the public is continuing to be misinformed by NAMI's education and outreach activities performed as a "public service;" which is continuing to cause more harm to some of the most vulnerable members of society, under the guise of benevolent assistance.

It is morally unconscionable that human beings can be forced to take drugs which are well known for causing a variety of iatrogenic illnesses, including brain damage and neurological impairments that can be permanent and disabling and fatal. Particularly, since it is also well documented these drugs are only "effective" treatment for a little more than a quarter of of adults with a diagnosis of schizophrenia! Everyone who takes the drugs are at risk for experiencing debilitating, deleterious effects; children and the elderly are particularly vulnerable to the drugs negative effects. In spite of this increased risk, children and the elderly are prescribed the drugs at an alarming rate; including being prescribed the drugs for conditions that the drugs are not even known to actually treat; and are not approved for. When this is the case, and Medicare or Medicaid pays for the prescription, it is Medicaid and Medicare FRAUD.

The drug companies have used the desperation of family members, and have enlisted their assistance and have even convinced NAMI members that they are acting as advocates for the mentally ill; when in effect, they are performing rather well as unpaid lobbyists. The dissemination of drug company funded and produced multimedia "educational and advocacy materials" through NAMI also functions as a marketing tool---additional volunteer marketing is done by the enlisted families, friends and the mentally ill themselves. All in all, a pretty slick plan that is working out pretty well for the drug industry; but not so well for those who are disabled, killed or forced to comply under Court Order without their rights to Substantive and Procedural Due Process being protected or defended. Without hope, or escape.

It is in no small part due to NAMI's willing assistance Nationwide, (giving the term 'grassroots' advocacy a whole new meaning!) the pharmaceutical companies have in fact defrauded Medicaid, Medicare, and Tricare programs of billions of dollars, and have been heavily fined. The drug companies persist in their successful fraud; using corrupt business practices and capitalizing on NAMI members complicit, cheerful assistance.

The failure of journalists to adhere to the Ethics of Journalism, when "reporting," stories about mental health, e.g. independently verifying facts--Reporting is not simply publishing announcements developed by marketing departments, or restating an academic's biased interpretation and conclusion of what data gathered in research means. Reporting ethically doesn't actually allow for Conflicts of Interest or other types of ethically questionable behavior to go without being mentioned at all... Any "news story" in which a reporter does these things--is not 'reporting" in an ethical, or real sense. The three articles which were finalists for this award, published personal opinions, i.e. the biased views of the individuals interviewed, as if the interviewees opinions about the nature and etiology of mental illnesses; were facts.

Are you folks at The Coalition to Improve Mental Health Reporting and the University of Washington teaching Journalism Ethics and Social Work even aware that the funding for the Behavioral Health Care Conference held in Yakima, Washington, at which this award was bestowed upon Maureen Hagen, is funded by the Eli Lilly drug company? I wonder, do you even care? Ms Hagen's article was not a "news story" worthy of being honored for "Ethics of Journalism;" although, in some ways it's ethical lapses were less than the other two finalists. This article is a fluff piece written to recognize a woman's birthday, and her successful mission; which is pushing a biased agenda supported by NAMI National and the Treatment Advocacy Center. This is not the same thing as writing a news article which exemplifies the ethical principles of journalism about mental illness, or the people who have been diagnosed with a mental illness... It isn't even close...

The fact that NAMI provides neither advocacy nor assistance to my son, or to families like ours, who have been misled, and outright lied to by psychiatrists, belies their claim to be the Nation's voice on Mental Illness. It calls the intent of their "advocacy" into question, since NAMI ignores 'the sickest of the sick;' who are in fact further victimized by the policies and programs NAMI aggressively lobbies for. Families whose loved ones are used like animals in unethical drug trials, (like my son was) have been cast aside like yesterdays trash.

How does NAMI get away with getting both State and Federal funds, while blatantly functioning as lobbyists promoting legislation, and pushing for Public Policies which benefit it's Drug industry benefactors; and the source of the majority of NAMI's income? These benefactors are the very same perpetrators of the ongoing fraud which is decimating the very public programs NAMI then claims to be trying to save! No mention is made of this obvious Conflict of Interest, is it not worthy of reporting!? I am sure that the lack of integrity, and the lack of ethics with which journalists report these stories has everything to do with the income derived from direct to consumer marketing of drugs; so it is apparent that the ongoing rampant fraud and corruption that permeates everything to do with the diagnosis and treatment of mental illness will continue unchecked and unreported.

It really gets me that journalists who fail to ethically report the news are actually given awards for ETHICS in journalism! This one is simply staggering---kudos for a writer's journalistic integrity and ethics praising a woman who founded and led a parent's advocacy group that functions more like a booster club for psychiatric drugs; than it does as advocates for Washington State's sons and daughters who actually take them. A writer being lauded for an article featuring a local leader in a powerful national special interest lobby that intentionally or not, has for all intents and purposes, become willing co-conspirators in the ongoing fraud being committed by it's drug industry benefactors.

This type of article which ignores the ethics of journalism, has, in no small part, contributed to the lack of public knowledge about events in the public interest. This article is given an award for ethics in journalism, when the article shows no evidence whatsoever that the writer even knows what the Ethics of Journalism are. This article misinforms the public about the effects of the advocate being celebrated, and the group to which she belongs. The group itself purposely misinforms the public about psychiatric drugs and diagnoses; which allows it's benefactors to continue pilfering the publicly funded medical programs and fleecing the pockets of the taxpaying public. And journalists continue to write biased articles misinforming the public about the effects of this group's advocacy; which also allows the ongoing fraud and corruption to continue unabated and unquestioned by the misinformed public. Now they are being given awards for it!?!

I am not a writer for the State's largest newspaper, nor am I a professional journalist. I am just a mother who has had to make it my business to actually validate information about mental illnesses, psychiatry, mental health advocacy, journalism and ethics in order to hopefully help my son have a life worth living with whatever time he has left, and hopefully to prevent what happened to him from happening to any other child here in Washington State, or anywhere else. It is the lack of ethics and integrity in the people who work in the professions of psychiatry, advocacy, journalism and public service, that have enabled and at times, who have worked collaboratively with the pharmaceutical industry that is to blame for plight of the people who are diagnosed as mentally ill. I see the people themselves, before I see the diagnostic labels they are given.

I am a MadMother for good damned reason.

Sometimes, I am a MadMother who roars for good damn reason.

here is one of them:

As a psychiatrist, a professor at the U of W, and the Medical Director of the State of Washington's only psychiatric facility for children, Child Study and Treatment Center, Jon McClellan ignored State and Federal Law, the Ethical Guidelines for Informed Consent, the Hippocratic Oath and the Nuremberg Code: Jon McClellan is a federally funded clinical researcher who used my son as a guinea pig prescribing numerous neuroleptic drugs to treat schizophrenia...in spite of my son having Left Temporal Lobe Epilepsy, a neurological condition which excludes a diagnosis of schizophrenia.

QUACK MASTER JACK HAD HIS OWN CONSENT;
he claimed he didn't need anyone else's...